Fibromyalgia and The Guaifenesin Protocol ("guai")

Does fibromyalgia get worse with each successive generation?

2006-05-11T02:34:00.000-07:00

There was an interesting string of posts on the GuaiGroup Support Group (www.fibromyalgiatreatment.com) about whether fibromyalgia gets worse with each successive generation.

First off, for those of you not aware of it, fibromyalgia runs very strongly in families. If you have it, then there is a very strong chance that one of your parents had it.

If you have children, you have a 50-50 chance of passing the gene on to each one of your children.

Now, the question under discussion was whether fibromyalgia gets worse with each successive generation, as some people noticed that they showed symptoms much earlier than their parents, (who in many cases were never officially diagnosed), and their children are showing symptoms even earlier.

One of the admins, Gretchen Parker, had an interesting response to this thread:

>>..Having said all this I have to agree that Dr. St. Amand is right. We each
>>are born with a different genetic complement that portends FMS at some time
>>in life. If we are dealt the full genetic complement it shows up early. If
>>we only get a little bit of the genetic complement it comes on later. I
>>don't think its a given that it gets worse with each generation
- Gretchen

Interesting to think that the FMS shows up when the genetic compliment tells it to. I often wondered if I've had "FMS since birth," since this is a hereditary disease, or have I only had since I was 18, when my first major symptoms of headaches and back pain began? When did my FMS really begin?

Anyway, I always enjoy reading posts on the GuaiGroup that make me think, and this one tonight got me to thinking. I guess it's an issue that's been on my mind a lot because I've been wondering if I've passed the FMS gene on to my son, Alex. He's showing several symptoms, but sometimes I wonder if I'm just being paranoid. His feet ache, so we had orthodics made at the podiatrist, but he says his feet still hurt. Pains in the bottom of your feet are a fibro thing. Or, it could just be that his orthodics aren't quite working right. He's shown signs of irritable bowel this Spring. But, perhaps that is just a food allergy. He grinds his teeth very loud at night, (bruxism), which is a common fibro thing, and he also kicks his legs like crazy at night. (Restless Leg Syndrome is another telltale fibro sign.) Oh, and several times he's complained of pain in his mid-back. Growing pains. Dr. St. Amand says growing should not hurt. But, these could all be unrelated things, too.

Just to be on the safe side, I want to get my son checked by Dr. St. Amand. I don't think there is anyone else in the world who could get even diagnose pediatric fibromyalgia. I don't dare mention this to my son's pediatrician. I know I would get greeted with a look of scorn, and get told that there is no such disease as pediatric fibromyalgia. Hell, most doctors don't even believe fibromyalgia is a disease. How could I expect them to believe a child of someone with the disease could possibly have it, too?

(sigh)

This is going to get a hell of a lot easier once they have a blood test to confirm the presence of fibromyalgia. Just a simple blood test, like they have for Lupus, and some of the other arthritic conditions out there. It would change the whole status of people with fibromyalgia in the medical community. Without a blood test, or a way to "prove" we have fibromyalgia, we'll always still be stuck in this grey, murky, realm of the skeptics. It's like have lepracy or something, except our leper colony is mainstream America.

Ach! My aching back and head...

2006-04-20T09:32:00.000-07:00

OK, I think I'm beginning to repeat myself. At least I'm consistent.

I'll say it again. Ach! My aching back and head!

OK, there. I got it out of my system.

If I had to pick the two areas of my body the fibromyalgia has hit me the hardest, it would definitely me the back and head. OK, and with those two, you'd have to lump in the neck and shoulders, since it connects the neck and head.

For the past two weeks, I've had an unending series of muscles spasms, headaches, and back pain. I take all of this to be a very good sign. On the guaifenesen protocol, you reverse the disease in the same order you got it. Or, to put it another way, since the first major sign something was wrong with me were the major headaches that slammed me when I was 18, followed by the back pain that started in my mid-twenties, I seem to be now be reversing the very first of my symptoms.

Could this mean I am now nearing the end of my reversal cycles?

It's possible. It seems almost too good to be true, but it is possible.

I almost don't dare to hope, because it seems too easy.

But, it takes about two months to reverse the disease for every year you've been showing symptoms. So, I'm 36 and my headaches started when I was 18. That's 18 years worth of the disease. 18 years of reversal x 2 months to reverse each of those years. That means, it will take me 36 months to reverse. I've been on guai almost two years, and I've heard it takes about a year to reverse the head, neck and shoulders area, and it's one of the hardest areas to reverse.

So, it is possible I am entering the last, and the very hardest, of the reversal cycles.

So, the bad news is that I'm in for a hell of a year over the next year. And, these past couple of weeks have been a preview of that. The unending headaches and spasms and back pain. But, the great news is that after a year of this, I may actually be done with the reversal cycles.

And, that is a thought so wonderful and beautiful, I think I can get through just about any amount of pain.

In the meantime, I'll keep judiciously taking my muscle relaxants and Tylenol and Aleve and Ibuprofen, and going to the gym, and stretching, and just trying to get through the pain the best I can.

And one day, maybe just over a year from now, I may actually wake up one morning and NOT be in pain.

Wow-- what a day that would be! Imagine-- a whole day without pain! A day without a headache... A day without backache... A day without a stiff neck, or tight shoulders, or muscle spasms. A day where I could bend over and pick up laundry off the floor, or Alex's constantly scattered toys, without a spasm of pain going through my whole back... What would that be like? I guess I might know in as little as a year. It's a very, very exciting thought.

Being on the guai protocol has given me so much hope for the future.

A future I never would have had otherwise.

# # #

P.S. As I mentioned before, I'm not updating this blog much anymore, as since I got my new iMac G5 I'm mainly updating my new Mac multimedia blog, which is accessible off of www.surfercouple.com. I'll just be updating this blog when I'm traveling, and have my 'ol PC notebook with me, and have no access to my G5.

I have a new multimedia blog.

2006-04-08T07:33:00.000-07:00

I have a new multimedia blog, complete with stretches that are beneficial for fibromyalgia. I jokingly call these "Stretch your butt with Diana." All of these are accessible off of my personal website www.surfercouple.com. All the videos are streamed, so they won't kill your connection. My hubby bought me a Mac for Christmas, so I've been experimenting with the blogging software that came with iLife 06, to see what it can do above and beyond what's offered here at blogger.com.

Here's the links directly to the new stuff I've created. All of it is still directly reacted to fibromyalgia and the guaifenesen protocol.

Diana's new multimedia blog about fibro and the guai protocol:

http://web.mac.com/dianawolftorres/iWeb/site/Blog/Blog.html

What does fibromyalgia feel like?

2006-04-08T07:32:00.000-07:00

Fibromyalgia is a very tricky, elusive disease. It comes and goes in cycles, attacking different places in your body without any seeming pattern or sense to it. One day you’re feeling pretty good, and the next day you’re feeling so dreadful you can hardly hold a coherent thought together, much less be productive and cheerful at your work.

I read a great description of fibromyalgia as feeling “flu-like.” Think back to the last time you were “coming down with something.” It’s that day before you start showing the obvious symptoms of sneezing, coughing and fever. On that day before, you just feel so generally “blah,” but you don’t know why. Your voice sounds fine. You’re not sneezing. You don’t have a fever. You just feel so tired, and achey, and awful all over. (The medical term for this is ‘malaise.’) You feel so poorly it is difficult to concentrate at work. Heck, it’s difficult to concentrate enough just to drive to work, and you feel totally spaced while driving. You feel so awful you just want the day to be over so you can go to bed, and hope that tomorrow will be a better day.

That’s fibromyalgia. Sometimes the next day is better. Sometimes it’s the same thing all over again. And, sometimes, despairingly, it’s even worse.

Think back again to that pre-flu day, and how difficult it is to do the most ordinary things—like just getting out of bed.

The day goes something like this… Your alarm goes off, and you’re still so tired you can’t believe it’s morning already and you’re actually expected to move. You’d give just about anything to sink back into your mattress and not move all day. You hit snooze so many times, adrenaline finally kicks in a bit, screaming: “Now you’re running late! GET UP!!!” You depend upon that adrenaline to help you get out of bed, and stumble to the shower. You can’t believe how much it hurts just to walk those few steps. You look longingly back at your bed. “Don’t even think about it!” screams your adrenaline, pushing you toward the shower again.

You don’t want to strip out of your pajamas. You feel chilled and stiff all over. Getting naked and soaking wet seems so very unappealing at the moment. You run the shower, getting it as hot as you can stand, and hoping the steam will warm the bathroom up a bit. You begin to peel of your pajamas, wondering at how much it hurts just to lift your arms over your head, and how stiff you feel as you bend down to remove your bottoms.

Finally, you step into the shower. “Get moving! You’re late! You’re late!” screams your adrenaline again.

The water feels overly hot, but you still feel cold all over. You reach for the shampoo, but it hurts to raise your arms over your head. You decide to just stand there for a while before trying to shampoo your hair, hoping the hot water will ease your still, aching muscles up a bit. You close your eyes, and almost fall asleep again right there in the shower.

“Up! Up! Up!” yells the adrenaline again, “This is no time for a leisurely shower! Get washing!”

You reluctantly reach for the shampoo bottle again, bracing for the pain of lifting your arms over your head to wash your hair. It’s painful and uncomfortable, but you grit your teeth and get the job done. You reach for the soap to wash your body. You can wash your mid-boy OK, as that doesn’t involve much bending or reaching, but you dread reaching down to wash your legs and feet.

You consider skipping this step, thinking maybe the shampoo suds dripping down off your head will count as a full-body wash.

“Don’t be gross. Just wash! Late! We’re late!” screams your adrenaline.

You reluctantly bend to wash your legs and feet, amazed the amount of pain this causes in your spine and leg muscles. Just the act of bending over makes you suddenly dizzy, and you grab onto the walls of the shower to remain standing. You try to ignore the dizziness as you wash, dreading the head rush you’ll get as you straighten up again.

The head rush hits. Swarms of black dots swim in front of your eyes. You put both hands out to brace yourself on the sides of the shower, until things steady again.

You’ve done it. You’ve finished your shower. Now, only 16 hours to go and then you can go back to bed again…

Now, imagine this going for ten, twenty or thirty years.

And, all through this time, you look like “the picture of health.” Your cheeks are rosy. You certainly don’t “look sick.”

You make an appointment with your doctor. Surely feeling this poorly can’t be normal? (And, surely this is fixable!)

Your doctor checks you over. Every blood test comes back as perfectly normal. Once again, you appear to be “the picture of health.”

“Just stress. Try to relax,” says the doctor, “Get some exercise. That will increase your energy level.”

Exercise?! Just getting out of bed this morning seemed like a triathalon event. And, this crazy man wants me to exercise?! It’s a miracle I was even able to get dressed and make it to this doctor’s appointment—this appointment where I hoped I’d get some answers…

Welcome to the world of fibromyalgia.

You wonder yourself—how could you look so normal on the outside, and have nothing show up on any of the doctor’s tests, yet feel so abnormal on the inside?

Surely, the doctor must have missed something! So, you make an appointment with another doctor. And, then another. Perhaps some doctor along the way begins to prescribe some drugs for you. Some anti-depressants that make you feel even more tired, and make you put on weight. And, you weren’t depressed to begin with. The only thing bumming you out was how awful you were feeling everyday…

And, now you’re stressing out because you’re falling behind at work, and the house is a mess, and your spouse is getting frustrated since you’re irritable all the time, and just don’t seem to be “snapping out of this thing” or getting better. And, you never feel like having sex anymore because you’re always so tired, and achey feeling, and just want to sleep in your bed, not doing anything energetic in it…

And, when your friends call, you make excuses not to go out, until finally they stop calling…

But, maddeningly, this “illness” seems to come and go without pattern or warning. There are some days where you feel almost normal again. So, you think you’re “getting better.” Or, that latest pill (or homeopathic treatment you’ve tried is actually working, and you’ve found “it.” The right treatment! The answer to this puzzling mystery. You’re getting better now! You’re overjoyed, and tell everyone of this wonder cure you’ve figured out that improved your energy and dispelled your malaise.

You’re thrilled that things are somewhat ‘normal’ again, and throw yourself back into your work, trying to catch up on everything you’d fallen behind on. And, you throw yourself back into your housework, trying to get all caught up there, too, doing massive piles of laundry, and cleaning everything in sight. And, you call your friends again, and invite them all over, to make it up to them for blowing them off before. And, everything seems OK. Your wonderpill seems to be working and everything seems like it’s going to be OK…

Then, it hits again. You wake up one morning, and once again feel like you’re getting sucked into the mattress. It is so very, very hard to get up again. And, when your bare feet first touch the floor, the bottoms of your feet feel so tender and painful. Like someone was whacking at them with a baseball while you were sleeping.

“Oh no, not again,” you despair, wondering what type of doctor you should see this time. What is causing this?! And, who should you see? A podiatrist for your aching feet? A chiropractor for your aching back? An internist for your irritable bowels? A general practioner for your overwhelming fatigue? Or, maybe a therapist? I mean, how can you look like the “picture of health,” and feel so bloody dreadful!

(You begin to hate that phrase “picture of health.”)

You begin to doubt your own sanity. And, you feel angry at the doctors for not being able to give you a diagnosis, or provide any answers that make sense.

“It’s not stress!” you think angrily. “The only thing stressful in my life is how awful I feel, and all the problems that causes!”

And, now your house is half-torn apart from your cleaning rampage, and you have all those friends coming over for dinner, and you just took on an extra project at work to make up for the stuff you’d half-heartedly completed before. How are you ever going to do all that when you can barely manage shampooing your hair?!

Welcome to the world of fibromyalgia. Perhaps one of the most elusive and maddening diseases on the planet.

The more people with fibromyalgia I meet, the more I’m amazed at how much we all have in common with our histories. Sure the places we grew up with were different. The faces of the people around us were different. We worked for different companies in different places. But, the way fibromyalgia affected our lives is so shockingly similar it’s as if we’ve all lived out the same story again and again, just in different settings.

Response back to " Jenni's_painted_dreams"

2006-02-28T13:36:00.000-08:00

I received an email the other day from someone who found my blog:

>>From: Jenni's_painted_dreams [mailto:noreply-comment@blogger.com]
>>Sent: Friday, February 24, 2006 6:09 PM
>>To: dtorres@surfercouple.com
>>Subject: [Fibromyalgia and The Guaifenesin Protocol ("guai")] 2/24/2006 06:12:20 PM

>>I just read about the guaifenesin Protocol...and boy am I excited!!!I have asked for >>this before from my Doc for my asthma,as it seems to really help that,but now to find >>out that it will help my fibro,I am soooo.....excited,I can hardly wait to get to the >>Doc next week. Jenni

It's always gratifying for me to know I've actually reached someone else out there with fibromyalgia, particularly someone who is in the same place where I was two years ago, and searching for some alternative treatments other than the usual painkillers and anti-depressants.

So, I was excited to receive the email from "Jenni's painted dreams" but disappointed that I wasn't able to email Jenni back. I drafted a note back, but the blogger mail bot bounced the note back. So, Jenni, if you do come back to my blog, here is the email I wanted to send back in response to you:

From: Diana Wolf Torres [mailto:dtorres@surfercouple.com]
Sent: Saturday, February 25, 2006 6:26 PM
To: Jenni's_painted_dreams
Subject: RE: [Fibromyalgia and The Guaifenesin Protocol ("guai")] 2/24/2006 06:12:20 PM

Hi Jenni!

Glad to hear you found my blog. Now, your doctor may not be aware of guaifenesen being used for fibromyalgia. Or, if he has, you may get one of three reactions:

1) He may be very supportive, because he knows people who have been helped by the protocol. (Best case scenario.)

2) He may be neutral about it, having heard of it, but not knowing it it works. So, he'll say: "Well, it can't hurt, so try it if you want, but still keep up with your other meds...)

3) He may be very negative about it, and call Dr. St. Amand a quack. This does happen. There was a study about ten years ago to study the effectiveness of guaifenesen, and unfortuantely, this was done before it was known that certain products can block the effectiveness of guaifenesen. These blockers are called salicylates, (OK, I might be spelling that wrong.) They're all things that come from plant products. You see, guaifenesen is a plant product itself. It comes from the bark of a tree, just the way aspirin does. But, guaifenesen is finicky stuff. If you're taking guaifenesen, plus using beauty products with plant products in them, (say some body lotion with aloe in it,) your body can't process the aloe and the guaifenesen at the same time, and the guaifenesen is blocked. When the study was done, it wasn't known the guaifenesen was so easily blocked, and most of the people in the study were women, many of whom used makeup, shampoos and lotions with plant products in them, (shampoos with herbal extracts, etc.)

So, because of this one study, there are many doctors out there who will say, "Yes, I've heard of the guaifenesen protocol, it does not work." Be prepared for this. Tell your doctor you would like to try it anyway. Guaifenesen certainly will not hurt you. It is a medication with no known side effects. (OK, some people can get slight stomach upset from it, but that's it. It's a very mild medication.) But, in folks with fibromyalgia, it can make a huge difference. And, with or without your doctors' support, you can do this. Guaifenesen is a generic medication that is available over the counter. You can get it anywhere, from all kinds of different manufacturers. It's nice that no one company owns the market on guaifenesen, because it keeps the costs down, much like aspirin, it's a generic thing.

So, before you start, I strongly suggest you read the book: "What Your Doctor May Not Tell You About Fibromyalgia," by Dr. St. Amand. It is easily available in most bookstores. I know Barnes and Noble carries it. It's about $10.95. It's a very quick read. You can get through it in about three hours, and it will tell you everything you need to know in order to get started. (Plus, it does a much better job than I just did explaining about the salicytates.) (OK, I just spelled that wrong again.)

Once you do start, I'd like to invite you to join our online support group. It's free, and you can either just read the postings, or ask questions, or offer advice and suggestions to other people, or whatever you like. The support group address is: www.guaigroup.org. The slogan of our group is: "Spread Hope." The idea behind it is there is an effective treatment for fibromyalgia, something beyond painkillers and anti-depressants-- something that will let you get your life back to the way it was before all the aches and pains took over. In short, you'll get your life back. It's going to take a couple of years. And, this is the tough part, for a while, you're going to have to feel a little bit worse, before you get better. There is no other way around it. In order to get all this "fibrocrud" (as I call it) out of your system, the guaifenesen will cause you to "cycle," which means you're going to feel worse. Then, you'll pee some of the crud out, feel better for a few days, then the cycling starts again. This process will go on for a few years, but once you're done cycling, that's it. You're done. I mean, you're done for life. Those fibromyalgia symptoms that have been plaguing you will be gone for the rest of the days. Granted, you will have to stay on guaifenesen to prevent the fibrocrud from reaccumulating, but whatever, it's a cheap, generic thing, without side effects, so who cares? Small price to pay to be normal for the rest of your days. There are few other chronic pain conditions where you get off so easily, that's for sure.

Jenni, this is the start of an incredible journey for you. You are soon to get your life back, the way it was. So, I do hope your doctor is supportive, but even if he poo poos the whole idea, buy the book anyway, and make up your own mind. Email me back and let me know how it goes, OK? I'd be happy to be your mentor on this, and answer any questions.

Good luck!

Cheers,
Diana

Mr. Ralph died today.

2006-02-10T17:11:00.000-08:00

Mr. Ralph died today.

Yes, OK, this post won't be about the guaifenesen protocol, but you'll have to forgive me. Ralph was a special friend.

The kids all called him "Mr. Ralph," so we all ended up calling him that, too. We didn't even know his last name. And, now he's dead.

He just showed up at our church one Sunday. An older gentleman with bright blue eyes, a full head of white hair, neatly dressed, with a cane. He sat down in the back row, the one where all the parents with small kids sit.

"This is the noisy row," one mother warned him. "All the kids are here."

"I don't mind," he said with a friendly smile, "I wouldn't want to be anyplace else."

The kids took a liking to him right away. He always had a smile for them, and they for him.

He was there every Sunday, sitting at the end of the noisy kids' row. Soon, the kids all liked Mr. Ralph so much that they took turns carefully walking him up to the front of the church for communion, carefully holding his arm, and careful not to knock over his cane. And, Ralph adored the kids. Each and everyone of them.

I run the Sunday School program, and the week before Launch Day, (the official start of Sunday School,) I received a call from Ralph. He wanted to do something special for the kids, and knew we were planning on a picnic and some games for Launch Day. Would it be alright if he hired a face painter and magician? And, so he did. He found a delightful entertainer, who not only painted faces and did magic tricks, she told stories, all with a Christian theme. Ralph modestly watched for a few minutes, his usual happy smile on his face, then headed home in a taxi.

He didn't drive, and always had to rely on a taxi to get to and from church.

"I can take you home, Ralph," I said, "I have plenty of room in my minivan."

It took a bit of arm twisting, as Ralph didn't want to be any trouble. But, finally I was able to convince Ralph to let me give him rides home after church. And, so I had a chance to get to know our new church member a little better.

He'd been an apple farmer, and enjoyed getting to know his migrant workers. He told me about the time he'd been invited to Mexico for the wedding of his foreman. Many of the people in the village were migrant workers from his farm. He'd always treated his workers very well, paying them higher than average wages. He said he had the most wonderful visit, and they made him feel so welcome. He stayed three days, and then had to return home. Even then, they didn't want him to go. He talked very fondly of that visit, and what a nice feeling of family and camaraderie.

Ralph didn't seem to have much of a family.

He was always alone. As I drove him home from midnight mass on Christmas Eve, I asked him what he would be doing on Christmas Day.

"Oh, just cooking myself a meal, I guess, and watching a little TV," he said.

I finally got the nerve up to ask him about his own family, and he told me one of his sons was dead, having died in a motorcycle accident 8 years earlier, and the other lived near his mother. From the way he said it, I got the impression he was estranged from both his wife and son, and that it had been that way for a long time. And, that he'd spent many such Christmases alone.

"Oh," was all I could answer. I wished I could invite him over for Christmas, but knew my husband wasn't as nearly enamored with my church friends as I was. I thought I'd be pushing my luck if I invited over someone he didn't know for Christmas Day dinner without asking him first. So, I remained quiet.

Little did I know that would be Ralph's last Christmas.

I walked Ralph to his door, and wished him a Merry Christmas.

The next Sunday was New Year's Day. I'd been looking forward to services all week, because the string/wind group was playing, and John and Kathy had told me to expect a very small grou

What a difference two years can make.

2006-01-20T00:04:00.000-08:00

A posting on the guai board this evening really touched me. One of the members of our online support group wrote about her progress after two years of guaifenesen and her words totally struck a chord with me. I'm going to paste her note below, and after that, in italics, paste what I wrote in response:

[quoted from a posting on guaigroup.org on 1/19/06]
>>I am fast approaching my 2 yr rebirth day. 3/04 was when I started
>> on guai protocol. At that time I was on the brink of suicide.
>> I had been bed ridden for six month with a pain level of 8-9 daily.
>> Exhaustion was my constant companion. I had no life.
>> I was aware of the protocol for many years but thought,
>> like my doctor, that it was just too complicated
>>and not a proven method--it just would not work.
>> I'm here to tell you that it does.
>> Don't get me wrong. I still have pain, fatigue
>>and other "gifts" of thisd.d. [damned disease]but
>> I have a life-a real life. I am volunteering
>>for the Or. State Park system as a campground host.
>> This was a dream of mine way back when.
>>I live full time in a travel trailer and get to
>>travel the state and meet new people. I can "work"
>> the 4 hours daily x 5 days required by the state
>>after being unable to work for 16 years.
>> I really found out who my friends were when
>>the fibro hit with full force. A few stuck with
>> me, many dropped by the wayside. They were unable
>>to understand that I was sick and could not make
>> plans to do thiings with them. They did not
>>undertand why sometimes I wanted to leave as soon
>>as we arrived somewhere.
>>In the past six months I have,after retitrating
>> my dose, gone river rafting, hiked trails,
>>driven miles and miles. seen more of the state
>>I live in than I did in the previous 10 years.
>> I HAVE A LIFE.
>>My children have a mother again.
>>I can do the Christmas baking.
>>When I visit them I can stay up late and play
>>cards and games. I still get tired, achy and
>> maintain a pain level around 5 but I am soooo much betterhyy

This posting struck a chord in me, particularly her mention of almost commiting suicide two years ago, her feeling that her children have a mother again, and the feeling that she is reborn.

Here is the note I posted back, sharing my similair experiences:

Your "two year rebirth day."

How beautiful! How touching!

Our stories have so much in common.

Two years ago I was in much the same position. I was in so much pain, and so depressed, and the doctors couldn't tell me why. They implied it was all in my head, and while I thought my pain was real, I started to think that maybe I was crazy. I'd been going to doctors for so many years. Not one of them ever mentioned fibromyalgia was a possibility. I didn't even know the disease existed. I just knew I felt awful everyday.

And, I felt that my husband and son would be much better off without me. With me out of the picture, my husband could remarry someone better than me, and have a better wife, and my son could have a better mother. Someone without chronic pain. (Or, the supposed chronic pain that the doctors said was all in my head.) Someone who wasn't irritable all the time, (from the same supposed chronic pain.) And, constantly exhausted, (although, I must just be lazy, since the doctors couldn't find anything wrong with me and all my blood tests kept coming back normal.) The fault must therefore lie in me, so the world would be better off without me.

I didn't want my husband to feel any guilt over my passing, so I decided it would be best if I just drove my minivan off of a cliff on Highway 1. For those of you not familair with California highways, Highway 1 runs right along the coast. We lived in Morro Bay, a coastal fishing village, conveniently located right on Highway 1. I just needed to find someone to watch my son, then I could follow the highway up the coast for about 25 miles into Big Sur, and simply turn off one of those cliffs. It would be so easy to do. There are so many sections there without guard rails, and the drops are so very steep. And, if it looked like an accident, then my husband could grieve without guilt, move on, and find himself a better wife.

And, that's the state I was in two years ago this month. Yes, because by mid-January 2004, I had given up all hope. I'd completely given up all hope I would ever feel better. I'd felt I had seen ever specialist, and exhausted ever possible avenue the medical field could offer me. They still could find nothing wrong, yet I kept getting worse and worse.

I think it was around January 16th or so, and I was sitting at the beach, staring at the ocean, pondering the meaning of life. I have always loved the ocean. The rythmns of the ocean have always soothed my soul. I wanted so much to believe life would get better. But, I just didn't know what else to do.

My son, who was two at the time, was romping about in the sand with our dog, and I had my journal on my lap. I was too exhausted to write, and my writings were so dark these days, I figured no one was going to read such dark drivel anyway. I just doodled idly, wondering what was the point of it all... Even my beloved Pacific Ocean could no longer soothe my troubled soul.

It was a cold day, overcast, with a chilly wind. There were grey clouds overhead, blocking the sunlight and making the ocean appear dull and grey. The ocean was churning and foaming, and the waves were poorly shaped. No one was out surfing. The day mirrored my mood.

It was then that I looked up at the sky, and murmured: "I could use a little help here."

The dark clouds continued to move back and forth in exactly the same pattern, showing no sign they had head me, and no sign they particularly cared. But, I continued to look skyward, and poured out my lament.

I sighed, and since I'd already decided I was crazy, there was no harm in talking to the clouds: "Look, I'm not asking for a miracle here. Just point me in the right direction. I know you like to help those who help themselves. I'm willing to help myself. I'm not even asking for an easy path or anything. I'm willing to take the road less traveled by, or a trial by fire, or be the last survivor on the island, or whatever it's going to take. But, I could use some help, please."

The dark clouds continued their endless movements, swirling about in their muddied patterns, and I sighed heavily, feeling as alone as ever. I could see no pattern in the clouds. No beauty in their shapes.

I looked back down at my drawing, but suddenly, a shape popped out at me from my drawing. My idle doodle looked a bit like a human body. So, I continued doodling, adding a head and limbs. And, I'm not sure why, but suddenly I began to mark down all the places in my body where I'd felt pain over the years. Before I knew it, I had marked off every quadrant of the body.

It hit me like a lightning bolt. Why I had I never realized this before? I was dealing with a system-wide problem! For so many years, I'd been concentrating on my most debalitating symptoms-- my skull-crunching headaches and terrible backpain, and ignoring the fact that my legs ached terribly when I walked up stairs, and my arms were often too tired to hold my son more than a few minutes at a time. Not to mention the diarrhea that I always thought was "something I ate," and the constipation that I thought was from the medications I took for my headaches. I never even mentioned these things to anyone, for fear they would think me a hypochondriac, as everyone already knew me as a person with chronic headaches, and a bad back.

As soon as we arrived home, I headed online and began searching for a system-wide disorder that could cause all the symptoms I'd been experiencing. Within a few hours, I found an exact match for my symptoms: fibromyalgia. And, wow! I never would have connected that symptom with this! And, I have that symptom, too! And, wow! I thought I was the only one who had that! You mean there are other people who have THAT symptom, too!? Amazing! I am not a freak of nature! There are other people out there just like me!

I'd been seeing doctors for my headaches and backaches for over twenty years now, and all along I'd had fibromyalgia. Now wonder my headaches had never gotten any better!

Well, I could go on and on, but I think you know how the story ends, because this story is your story, too.

This is all of our stories.

I was officially diagnosed with fibromyalgia, tried some treatments that didn't work, then heard about the guaifenesen protocol, was completely skeptical, but bought the book anyway, read it, decided to give it a try, and now the guaifenesen protocol has changed my life in so many ways... I guess the most significant way is that it has given me my life back.

The life that I almost threw away two years ago this month off of a cliff on Highway 1.

Well, you know exactly what I'm talking about Nancy, because you lived through this over the past two years as well.

The more people with fibromyalgia I meet, the more I am amazed how much our stories have in common.

Congratulations on your rebirth. Congratulations to all of us.

The importance of not getting enough sleep.

2006-01-18T21:53:00.000-08:00

So, I've stumbled upon something that's working very well for my fibromyalgia-related muscle stiffness- the importance of not getting enough sleep.

Starting in November, my son Alex went from two-day a week pre-school to five-day a week pre-school. So, suddenly we were up and about early every morning. I still had plenty to do in the evenings, so I wasn't able to head to bed much earlier, so suddenly I went from getting about 9 hours of sleep a night to about 7 hours of sleep a night.

And, then it happened.

My muscle stiffness got better.

I mean, it wasn't "Poof! All your fibromyalgia stiffness is instantly gone!" kind of better. But, it was "I'm having a good day" versus "I'm having a bad day" better.

A 'good day' is when I go to the gym, and my muscles scream like crazy when I first get on the elliptical trainer, and it hurts so bad during the first five minutes that I really want to stop, but after that the pain eases up, and I can make it through the rest of my workout. That's a good day. If I need something from the upstairs, I can go up and get it. Sure, when I get upstairs, those big muscles on the back of my thighs let out a mighty complaint, to the point that I actually say: "Ow!" out loud, but at least I can do it, I can make it up those stairs. That's a good day. On a bad day, all those tasks are nearly impossible.

So, I've been careful to get 7 hours or less of sleep every night. I'm carefully in bed my midnight, or 1 AM, or later. And, set my alarm for 7 AM, even on the weekends, even when I don't have to get up for something. Sure, it's hard to get up. I'm exhausted as I ever was. I haven't stopped having fibro, that's for sure. But, I know now a "full night's sleep" is too much time in bed for my muscles. They stiffen up. I'd rather be tired and limber, than well-rested but suffering the extreme stiffness of a 'bad day.' Now, that I know this easy trick to avoiding muscle stiffness, I'm sticking to it.

And, while I'm tired, I'm not any more tired than I was before. Fibromyalgia brings with it chronic fatigue. It is believed by many that fibromyalgia syndrome, (FMS), and Chronic Fatigue Syndrome, (CFS), are one and the same disease. The only difference is that CFS sufferers are people who get the fatigue, but have a higher pain tolerance, so do not suffer the debailitating pain. FMS sufferers have both the pain and fatigue.

So, I've decided-- if I'm going to be tired, it's going to be on my own terms. And, without the muscle stiffness. And, now I get all this extra computer time in the late evenings. :)

"Brain fog." What it is, and how it affects people with fibromyalgia.

2006-01-05T10:01:00.000-08:00

Perhaps one of the cruelest parts of this disease is the way it affects your brain.

The most commonly coined term is "FibroFog." One of the admins on our support group posted some excellent info on this topic this morning. I'll forward this info below, and then write a bit about my own experiences with fibro fog, and how I'm doing now, 18 months into the guaifenesen protocol.

[Information posted today on guaigroup.org from one of our board admins, Char]:

Dear Guai Friends,

We can cycle BRAIN symptoms with or without Guai.

The difference is that on Guai we are cycling *out* the phosphates and getting better.

On page 326 of the Book it states (and I put in caps for emphasis:) "Brain cycles -- The cognitive symptoms of fibromyalgia--impaired memory and concentration, depression, irritability, nervousness--that COME and GO IN CYCLES during BOTH the DEVELOPMENT and the REVERSAL of fibromyalgia."

"Brain fog (fibrofog)--a cluster of cognitive symptoms that can last for hours, weeks, or even months. Patients have trouble finding words when speaking, get lost looking for familiar places, transpose numbers, and suffer from impaired short-term memory. It is also described as if a fog exists between a patient and the rest of the world."

While on Guai and during reversal you will get these cycles as you cycle out.

This was explained in my post on Aug. 6th entitled "Brain Cycling."

Chapter 9 of the Book on pages 199-211 is worth reading over and over.

[Note from Diana-- the book Char is referring to here is Dr. St. Amand's book" "What Your Doctor May Not Tell Your About Fibromyalgia."]

Also on page 31 & 32, Dr. St. Amand refers to the brain again. "High-activity cells are the first hit and the worst affected by this shortage. The more cells are used, the more seriously they are affected. Small wonder that BRAIN and muscles are usually the HEAVIEST HIT OF ALL TISSUES."

A gain on page 52 & 53, while on Guai, Dr. St. Amand states: "The blood delivers large batches to the kidneys, but those organs cannot process the phosphates instantly. The blood therefore must allow minideposits to occur all over the body which cause generalized, flu-like aching. The BRAIN scoops its share, which leads to FATIGUE, COGNITIVE IMPAIRMENT, IRRITABILITY, AND INSOMNIA. It's deja vu all over again! The difference this time is that the KIDNEYS are NOW WORKING IN THE RIGHT DIRECTION, thanks to GUAIFENESIN. They are now in overdrive, eliminating the excess phosphate and calcium to the best of their capacity." "The symptoms of fibromyalgia appear to worsen until the kidneys catch up."

On Page 201 of the Book, Dr. St. Amand states "Brain cycles coincide with pain cycles, and so can last for a few hours, a few week, or for months.

When a patient's pain level diminishes, these other symptoms do too."

I urge everyone to read Chapter 9 pages 199-211.

So, in cycling brain symptoms, now we are headed towards wellness and cycling out the phosphates with our Guai.

Note: Be sure you have taken care of "Other conditions," are salicylate free, and are on the HG Diet, if needed.

Also, during the dark days of Winter, a bright S.A.D. light will help with depression.

If one is suffering from clinical depression, you need to see your doctor regarding the correct medication and therapy needed for your depression. Always check with your doctor or therapist if you are suffering from a severe depression.

[end of post from Char on the Guai board]

I actually find it very reassuring to know there is such a thing as "fibro fog," and that it will go away as surely as my other nagging symptoms will go away.

Just as I will one day be free of having diarrhea shortly after I eat a meal.

Or, be free of being bloated for five days because I haven't been able to "go."

Or, free of headaches so severe that my son's sweet voice sounds shrill, and I want to yell at him everytime he asks me an innocent question about the world. ("There is no why! Just shut up and stop asking!")

It almost seems to good to be true to think all my fibro symptoms will one day go away, but yet I do believe anyway.

There are thousands of men and women on the guai board who have gotten better and shared their stories. And, I'm living proof myself. In just 18 months I've gone from having symptoms so severe I contemplated ending my life, to being so significantly improved I can't even comprehend I'm that same person who could even have contemplated such an action.

I remember the fibro fog, and how it progressed over the years. I was always a bright kid. Starting in the second grade, I was pulled out of my classroom, given an I.Q. test, and placed in a gifted program. But, by fourth grade, I started having difficulties in math. It was interesting to read about in Char's posting about how people with fibromyalgia will transpose numbers. How frustating it was for me to be in the gifted program yet struggle with math! I was humiliated! I actually stopped taking math as soon as I could in high school, as I was embarassed that there was one subject that I didn't excel at like all the others. The college I selected didn't have a math requirement. You could take foreign languages instead as a "critical reasoning" requirement. I hated math, because math seemed to hate me. Now, it all makes sense. And, come to think of me, as my fibro has gotten better, I don't have to pull out the calculator anymore to add up the subtotals for Alex's book order at school. I do them by hand. (OK, some times I double-check them on the calculator as I don't want to be the Mommy that screws up the book order, but I always seem to get them right these days.)

I remember the fibrofog progressing at work, although back then I didn't have a name for it. I always thought maybe I needed more sleep, or maybe I was stressed out about work. But, sometimes I'd be sitting in a meeting, and we'd be discussing a problem we were facing, and I could feel that there was an idea, a really good one, just sitting there at the edge of my brain, but I just couldn't get it out. And, when I tried to articulate it, the words just didn't come out right. And, I used to pride myself on being so articulate! I'm a writer, for God's sake! Why were word's failing me now!

I remember one time, as part of my job duties as employee communications officer, I'd organized this huge quarterly meeting. I'd planned every detail. The company had grown tremendously during the dot com boom, and the only way we could fit every employee into the meeting at once was to set up a huge tent in the parking lot. It was a huge headache (literally!) to get all the sound systems working, and the seating just right, and the screens up for the PowerPoints, and to get the executives to turn their presentations in so we get the PowerPoints loaded, and plan the food and activities afterwards, and get the employees to show up on time. And, I didn't know I had fibro then, but boy did my head hurt and my back hurt, and I was so tired, but still I tried so hard to focus and make sure nothing went wrong. So, the day of the meeting came, and everyone showed up, and I got all the executives there, even though I had to go and drag some of them out of their offices when they didn't show up on time, as they seemed to always want to be fashionably late.

So, now it was time to start, and I waited for the CEO to step up to the microphone and begin, be he leaned over and whispered to me and said: "You did all the work, why don't you say a few clever words and introduce us?" He smiled at me encouragingly.

The CEO and I had always gotten along great, and he was the one who helped me get into this new employee communications position, which I had really wanted. They had created the position just for me. (My old job had been much less interesting.)

So, I stepped up to the microphone and looked into the bright lights and the faces of every employee into that very successful company-- both the 500 employees seated there, and the 500 employees who were watching this televised around the world, and...

... my mind went completely blank.

And, you must understand that I am not afraid of public speaking. I've published two books, appeared on television several times, national, coast-to-coast kind of stuff. I've done over 75 radio interviews, and done tons of public speaking. I love public speaking. In fact, I volunteer for it at the church, as I enjoy public speaking so much.

Yet, at that moment, not a single clever or relevant word came to mind.

All that came out of my mouth was: "Ummmmmmmmmm......"

Then, I panicked, and thought: 'Damnit, Diana! The whole executive staff is watching! The entire company! Say something! Anything! Get the meeting started!'

So, I said the first thing that came to mind: "Wow, this is some tent, huh? Big, isn't it? Do you know that this tent is so big that we had to have a fire marshal come inspect it? Boy, that was sure a pain! Well, anyway, here's Gordon to tell us how we did this quarter."

And, then I sat down.

I want to hide my head in my hands. Fire marshal? Yeah, some kid from the gifted program I turned out to be! I get up in front of a whole crowd of my peers and all I could think of to say was the fire marshal came! How lame was that!

As my career went on, it seemed there were more and more moments, where my brain seemed to fail me. Matter of fact, when my brain was "on" and coming up with good ideas, I was afraid to sleep. I would just stay up and right down as many good ideas as I could come up with, and get as much work done as I could, because I never knew when I woke up the next day if my brain would be "off" again and I would be as useless as dead wood again.

I was pretty pissed off at my brain for betraying me like that.

And, at this time, I would just like to say to my brain, welcome back, buddy. Welcome back.

# # #

Another sign that I'm feeling so much better...

2005-12-25T12:52:00.000-08:00

I meant to post this at the end of October, but I'm just getting a chance now...

I spent most of the month of October planning my son's birthday party in excruciating, almost ridicilous, detail. It was awesome. I spent hours on the invitation. I even included little refrigerator magnets, with artwork that matched the invitation, with a reminder about the date and time. I received so many comments back from folks saying: "That's the most creative birthday party invite I've ever seen!" And, "Are you a professional graphic designer?" (OK, and yes, that made me feel really good.) (Hey, we all like to have our egos fed.)

Originally, Alex had wanted a "Winnie the Pooh" party, but then he really got into Star Wars, and wanted a Star Wars party. This was fine with me, as of the two, Star Wars was a more fun theme to work with. (OK, namely because I loved Star Wars as a kid.)

I'd already purchased a Winnie the Pooh pinata, but no problem. Alex and I painted Winnie the Pooh black, added a mask and a cape, and created "Darth Pooh." It looked great! Here's a streaming video of Alex and the neighborhood kids stuffing candy into Darth Pooh in preparation for the party. http://www.youtube.com/?v=6Umgvyr-IIk

I invited all the kids from the neighborhood to the party, along with some of Alex's favorite friends from his pre-school and church.

After the invites went out, Alex's party was the talk of the neighborhood kids. One of the parents' down the street commented that her kids were more excited about Alex's birthday then they had been about their own. I was tickled pink that Alex's birthday was turning into this happy event being shared by all the kids! The anticipation leading up to the party was marvelous!

I started decorating the house the week of the party. I did a Google "Images" search on Star Wars imagery, and not just movie shots, but customized artwork created by fans. There's some amazing artwork out there! Shots of X-Wings in front of nebulas and fiery planets, and all manner of beautiful visuals.

Somehow, I stumbled across a website with music created by Star Wars fan. I downloaded some, and loved it. I decided then that as a "goodie bag" gift, I would give everyone a souvenir copy of the "Alex Party Soundtrack." The soundtrack contained 22 Star Wars songs-- a couple of which were the John Williams classics from the movies, but the rest were these marvelously clever renditions created by fans.

I'll admit that working on Alex's party almost became something obsessive, but the amazing part was that I had the energy to do it. In between getting my freelance work done, taking Alex to preschool, and trying to hit the gym a few times a week, I still had all this energy to expend on his party.

The week leading up to this party I worked constantly from morning to night on detail after detail. It was just awesome to have that level of energy again. I haven't had that kind of energy for a long, long time.

There was a chance of rain forecast for the day of the party, which would have been disastorous, as the whole party was set up to be an outdoor party-- but fortune shined on us. The weather cleared, and it ended up being a beautiful day. Picture perfect.

We had a giant slide set up in the front yard-- I mean, giant. This was an inflatable slide that towered above the house. In the backyard was the standard bounce house. The slide was the real hit, though. The kids just loved it! The party lasted eight hours! (The invites said 12-3 PM, but we said we didn't mind if people stayed later. The fact that the party lasted as long as it did showed it was a heck of a good party.) :)

Here's a short streaming video of Alex and some of the neighborhood kids thump, thump, thumping down the giant slide...

If there was any sign that my fibromyalgia has gotten significantly better in the past year, this was it. What a triumph! My son just loved it, and I felt so good to be able to celebrate his birthday in such a fun manner. (The neighborhood kids are already asking what we have in mind for next year.) :)

HG Diet- What I Eat, and Why I Do It.

2005-10-18T09:59:00.000-07:00

OK, quick primer for those of you unfamiliar with guai protocol terminology.

HG Diet= Hypoglycemia Diet, a low-sugar diet recommended for those with fibromyalgia.

Most, but not all, folks with fibro should follow this diet. More details available on my website: http://www.surfercouple.com/fibro_hg.htm

OK, now that we've gotten that out of the way, on to a discussion about the HG Diet, and why I do it...

I was in HG Denial for a long time. Even Dr. St. Amand (www.surfercouple.com/fibro_amand_visit.htm)
didn't think I was HG, beause I didn't have the classic symptoms, (headaches in front, dizziness when not eating, heart racing.)

But, throughout my life I've always some symptoms that took me a long time to connect with HG, such as insomnia, difficulties losing weight, cravings for sweets in the afternoons and after meals. So, I believe now I was always "slightly HG," but not enough for those classic symptoms to kick in.

So, why did I do the diet?

Once I started the guai protocol, all of my symptoms became "significantly but tolerably worse." All my aches, were now even achier. And, my bouts of insomnia became more frequent. I craved sweets, particularly in the afternoons. And, the bloating! Yikes! My pants were always too tight by the end of the day, to the point I had to change into sweats. And, any elastic against my skin (like undergarments) left deep uncomfortable grooves in my skin. Even the elastic of my socks cut deep, painful marks into my skin. A simple pair of socks felt like someone had tied super-tight strings around my legs, cutting off my circulation.

After reading all the different discussions of the HG Diet on the guai support group, I decided to give the HG Diet a try. It was a very healthy diet, so it certainly couldn't hurt to try it.

So, I tried the easier form of the HG diet first, HG Liberal. I saw some improvements. I had less bouts of sleeplessness. But, I was still plagued by bloating, and sugar cravings. I replaced my afternoon sugary snacks with cakes, cookies and brownies made with Splenda. Then, I read on the GuaiGroup that some folks react to Splenda just like they do sugar. I wondered if I was one of those people.

I endeavored to try the HG Strict diet, but wasn't able to always stick to it. Sometimes I wanted an extra piece of fruit, or a piece of fruit that wasn't on the allowed list, like mango or pineapple.

My goal now is to HG Strict everyday. When I do succeed in following the diet perfectly, even just for a week, I am rewarded. The bloating is so much better! I can pick up pretty much any pair of pants in my closet and I have a good chance of being able to fit into them. On my bloating days, I'm limited just to pants with drawstring waists. On really bad bloating days, I think longingly back to my maternity pants, with that stretchy pocket in front. Yes, it's THAT bad.

So, I'm not perfect on the diet, but it's my goal, and I'm working on it. The more perfectly I do the diet, the less hungry I am. The less I crave sweets in the afternoon.

To succeed on the diet, I know I need to plan ahead and not skip meals, and not let myself get too hungry. It's much easier to make super healthy choices when you're not famished and dizzy. I'm still working on the planning ahead part, as I'm a rather seat-of-the-pants person, but I'm getting there.

What I Eat:

Breakfast: I have eggs everday. (No cholesterol problems. For folks with cholesterol problems, there are other breakfast choices in the GuaiGroup Recipe Archive.)
Scrambled eggs. Fried eggs. Cheese omelettes. Eggs with tomatoes.

I used to eat slow-cooked oatmeal in the mornings, which is OK on HG Liberal, but had to give this up for HG Strict. I missed my oatmeal, at first. It was warm and soothing- a definite comfort food. But, now that I've been off oatmeal for a couple of months, I don't miss it at all.

I now believe the oatmeal was causing me to crave sweet things later in the day. It's nice to not be hit with those 4 PM sugar cravings.

I also used to miss cereals. I loved cereals as a kid, particularly the sweet ones, or the ones with dried fruit on top. But, like my other cravings, this has gone away, too.

After an initial withdrawal period, my body has stopped craving carb-rich things.

Goodbye Java!

I also gave up my morning coffee. This was another tough habit to kick. I used to depend upon my coffee to get me going. I'd feel so dreadful in the mronings! I depended upon coffee to ease me into my day. It was another drug, like the others I'd take each morning to get my stiff, 'oh-so-painful body moving.

But, giving up coffee had a definite advantage. I wake up more easily now, without the need of my caffeine drug, and mornings overall have gotten much easier as a result. Coffee was actually holding me back, when I thought it was helping me.

I now drink sugar-free hot chocolate in the mornings, which I make myself because the store bought ones have very bad things in them, like partially hydrogenated soybean oil. Sugar-free hot cocoa is very easy to make. I'll include the recipe at the bottom of this blog entry.

If I'm meeting a friend for "coffee," I'll have a decaf ice coffee with a shot of sugar-free hazelnut syrup. Or, as a big treat, I'll have a decaf, sugar-free vanilla latte. (I call this a treat because while I'm avoiding sugar and caffeine with the latte, it is topped with steamed, frothed milk, and milk is not allowed on HG Strict.)

Just as a tip for those of you terrified to give up your coffee habit, Starbucks and many of the other major chains carry a whole line of sugar-free syrups. It could very well be the comfort of a hot, tasty drink which you're craving, and not the caffeine, per se. Wean yourself off caffeine, just a 1/2 cup at a team. So, start with asking for 1/2 caf and 1/2 decaf. Do this for a week or ten days. Then, try going all decaf. You'll be surprised how easy it is to give up the caffeine, and how much better you'll feel as a result. And, those yummy coffee drinks taste every bit as good with decaf and sugar-free. Trust me. I'm a big Starbucks fan and don't feel I'm missing out even one teeny tiny little bit because I order my stuff decaf and sugar-free.

And, there's another advantage to kicking caffeine. Once I did-- my cravings for sweets went down even further. Caffeine raises insulin levels. Drink something caffeinated, and in an hour or two, you'll be going after something sweet. (This is a good reason not to give caffeinated sodas to children.)

Lunch:
For lunch, I have a salad topped with sliced meat left over from the previous night's dinner. I stir fry the meat in a pan with a little pat of butter to make it extra flavorful, and add a few pine nuts. Very tasty. I use a storebought sugar-free salad dressing, or sometimes make my own with balsamic vinegar, olive oil and spices.

At first, I missed having bread products at lunch, and thought I'd get bored with a salad each day. But, once cravings go away, you don't care much what you eat anymore as long as it's fresh, healthy and nutritious. How much easier it is to make good food choices now that my cravings are gone. Hooray!

Snacks:

I haven't been very good about planning snacks, and this is often my downfall. I'll try to go all the way from lunch to dinner without eating, and then I'm overhungry and dizzy while I'm preparing dinner, (and none too patient with my son who is by this time of day also overtired and crabby.) I'm trying to remember to eat some string cheese , a handful of pistachio nuts, and a glass of water or Crystal Light around 4 PM.

Dinner:

Dinners are easy to plan and prepare. I usually grill meat on the BBQ, which both my husband and son enjoy. We BBQ steak, chicken, fish, and sometimes even veggies. I steam up a side of vegetables, and sometimes also serve a salad. Sometimes we have as many as four sides of vegetable with dinner. No starches. Your body does not need starches. Skip them. They're just making you fat. Ditch 'em.

Resources I Use:

The South Beach Diet is very close to the HG Diet. The first two weeks of the South Beach Diet are almost identical to HG Strict. If you can do the one, you can do the other.

I've used a lot of South Beach recipes, sometimes adapting them a bit if there's any sugar in it, (like the chocolate-dipped strawberries recipe. Try it with dark, sugar-free chocolate instead.)

I also look up recipes on diabetic websites, and can find almost anything I need, such as a recent recipe I found for "Sugar-Free Zucchini Bread." Everyone loved this recipe, even folks who do sugar! It was moist and rich and delicious! Just double-check all these recipes as different folks have different ideas what "sugar-free" or "diabetic" means. Double-check the ingredients against the allowed food on the HG Diet, or if in doubt, email the recipe to the GuaiGroup and they'll help you adapt it so it's allowable.

When I bake, I use almond "flour" or hazelnut "flour" instead of regular flour. Nut flour is simply ground nuts. You can make it yourself. Nut flour doesn't rise up as high as regular flour, but heck, you're still getting to eat brownies and cookies, so who cares about fluff?

When baking for a party or such, I use Splenda, as it doesn't have a bitter aftertaste. But, I'm careful not to consume too much Splenda, as it does cause me to have bloating and IBS symptoms. (Different people react to Splenda in different ways, so you'll just have to experiment and see what works for you.)

Recipe:

Diana's Sugar Free Morning Cocoa

1-2 teaspoons of unsweetened cocoa
1-2 packets of artificial sweetener (I use Stevia)
Splash of vanilla extract
Pinch of salt (brings out the taste of the chocolate)
Splash of real cream

Combine all ingredients. Add boiling water. (The cream just cools down the boiling water a bit. You could skip this, and just use water that's not so hot. Or, use milk or soymilk instead. Just be aware that cream does not have sugar in it, and milk and soymilk do, so go easy on these items.)

I smell bad today. No doubt about it. (Air freshener, anyone?)

2005-09-28T21:52:00.000-07:00

Well, I smell bad today. No doubt about it.

What a happy thing!

As I mentioned before, stinky sweat and stinky urine are signs that you're purging the fibrocrud out of your system. Now, you can be cycling without the telltale stink, so the folks on the support group caution newbies not to get obsessed with the smell of their pee and such.

But, still, when I have a day where I just plain stink, I can't help but be happy.

I felt a bit ripe when I woke up in the morning, so I took a shower. And, as I was getting ready for bed, I noticed: "Wow! I stink again!" so I took another shower. And, as I'm happily scrubbing with soap, all I could think is: "I'm getting better! I'm getting better! I'm getting all that crud out of my system that made me so sick! Hooray for the stink!"

(In case you're wondering, I haven't had anyone else tell me I smell bad, and my husband is usually pretty upfront about pointing out such things. So, while it's probably only noticeable to me, I'm just reveling in the stink. Hooray! Hooray! My water bill might be a bit higher this month, but what a happy reason why!)

My story of Fibromyalgia and the Guaifenesin Protocol

2005-09-26T16:59:00.000-07:00

My Fibromyalgia Story

Diana Wolf Torres

My fibromyalgia story is one with many twists, turns, dead-ends, but like any good story, it has a thoroughly satisfying ending. It’s worth the read.

Let’s start at the beginning…

Memories as a wee little one

I had aches and pains as a kid growing up in New York, but always dismissed them as growing pains." I did very well in school, pulling good grades. I even played some sports, even though the only thing I seemed to be a “natural” at was natural clumsiness.

I still liked to play, so my Mom (bless her!) diligently drove me to Little League and soccer. I ran track in Middle School, and skied in the winter with my brothers.

And, clumsy or not, I had three older brothers to tag along after, and following their lead, I was soon climbing every tree I could find.

Every once in a while, I’d get hit with joint pain out of nowhere. And, it would move around. Sometimes it was an elbow. Then, a knee. Then, my back. But, I’d always assume I’d “strained” a muscle. After all, I was clumsy…

The Teenage Years

By the time I was in high school, my aches had progressed a bit. I started getting headaches, but they weren’t all the time, and they always seemed to clear up on their own. I assumed everybody gets headaches.

My ankles bothered me a lot, enough that I complained about them, and my Mom wouldn’t sign the permission slip for me to play soccer anymore. So, I switched over to drama and marching band, and my ankles did seem better without all that soccer ball kicking.

Other than that, I remember being in relatively good health back then. Except, I did sometimes have a terrible time waking up in the mornings. I’d be so tired, even after a full night’s rest. Just teenage laziness, I guess…

Off to college I go!

I was excited to start college, even if I was a bit nervous being 300 miles from home. I cried when I watched my parents pull away in the family station. That was it. I was alone, living away from home for the first time, and didn’t know a single soul there.

But, as it turns out, pretty much all the freshman were in the same boat, and when everyone’s feeling lonely and lost, it’s pretty easy to make friends fast. I found I really liked college, and I did well in my classes.

Imagine my surprise when suddenly I started waking up with these skull-crushing headaches. My skull felt so tight that sometimes I fantasized about drilling a hole in my skull to let some of the pressure out. These were headaches so intense it hurt just to have my head resting on my pillow. (Anybody who's had these type of headaches knows just what I’m talking about.)

As the day went on, the headache would get better, but the very next morning, it was back again. It didn’t exactly make it easy to jump up out of bed and face the day.

Surely pain like this wasn't normal? I checked with my roommate, and no, she didn’t feel that way everyday. OK, so it was just me. I better get this checked out…

I went to the campus infirmary, sure they could tell me what was going on, and how to fix it. Just a simple headache, right?

"Stress," they pronounced at the campus infirmary. "Try to relax."

Stress? Strange. I loved college. The only thing I found stressful were the terrible headaches. I’d like to relax, but my head feels so tightly wound right now that every teeny tiny little sound seems magnified 50x, and college dormitories aren’t exactly known as places of quiet and tranquility…

Take 8 Aspirin and Call Me in the Morning

So, I took aspirin, lots of it, and did my best to tune out the pain. By my senior year, I was taking 8 aspirin at a time. And, this dose just "took the edge off" the pain.

But, I learned to work around the pain, doing more when I felt OK, doing less when my skull felt like it was caving it on itself.

I graduated on-time in May of 1991, with dual degrees in English and Communications. (I couldn’t decide between the two subjects, as I liked them both so much, so I just took extra classes and graduated with dual degrees.)

I did tons of activities at college, too. What a little overachiever I was. Makes me tired now just to think of all I did then... radio station DJ, campus tour guide, dorm vice-president, professors’ assistant, intramural soccer and softball and broomball (a silly form of ice hockey), plus I worked part-time in a steakhouse clearing tables. (I built up lots of muscles carrying those heavy trays on my shoulders.) At one point, when my financial aid was cut back, I even worked in two restaurants at a time. I was able to manage it all, and I was content. College was a happy time, even with the headaches.

You’re Hired!

I took the summer off after college to care for two children that had just lost their Mom to cancer. The family was friends with ours, and I’d known the kids since they were babies. I had a wonderful summer with them, and I knew right then and there I wanted kids of my own one day. I’ll admit I was very tired some days, and it was tough getting out of bed in the mornings, but kids just wear you out, right?

By the end of summer, the father had found a suitable nanny for the kids, and I said a tearful good bye, and prepared to start my career in the ‘real world.’ Having graduated with good grades, and the markets being favorable, it was easy finding a job.

So, in the Fall of 1991, I started working in a Manhattan advertising agency, as an assistant in the creative department. I loved working in New York City, but found it very difficult waking up every morning before sunup to catch the train from my parents’ house down to the city. My headaches were still with me every morning, and I was also beginning to experience crushing fatigue some days. I was only 22 years old, and careful to go to bed on time every night. Why was I so tired?

I had my own medical insurance now, so I decided to see a neurologist. Neurologists specialize in the head, so surely this wondrous specialist could fix my headaches.

Migraines, Migraine Meds, and Giant, Hairy Spiders

"Migraines," pronounced the neurologist.

I was happy to have a diagnosis.

"Ah hah! Migraines! Now, it should be a simple matter to fix the problem," I thought, eagerly listening as the neurologist described the many treatment options available today for folks with migraines.

Ooooooh! So many treatment options! One of these is sure to fix the problem!

He prescribed some "migraine preventative" pills, (a.k.a. anti-depressants.)

Funny, I don't feel depressed.

"Anti-depressants are known to help with pain," the neurologist told me. So, I tried the pills.

Oh, um, well they don't seem to be making a bit of difference with my pain.

So, we played with the dose for a while. No effect. So, we moved on to another “migraine preventative” (a.k.a. anti-depressant.)

Hmmm… these preventatives don’t seem to be preventing much in me. And, why am I gaining weight all of a sudden? And, what’s with the dry mouth? And, why is now harder than ever to drag myself out of bed in the morning?

“Try these,” said the neurologist, “it’s only a matter of time before we find the right medicine and the right dose.”

Funny. This one doesn't work either, and this medication has even more side effects.

On it went. So, the neurologist would prescribe something even stronger…

OK, not funny. This isn't helping at all, and now I'm starting to have hallucinations in the middle of the night about giant spiders crawling up my chest. I mean, really big, hairy spiders...

Something wasn't right. I checked out every book the library had on migraines.

Hmmm... the more I read, the more puzzled I became. I didn't have the classic symptoms of migraines at all. I was missing some key symptoms, plus I had other symptoms that just didn't fit at all.

I went to the neurologist with my research, so I could point out these inconsistencies. I was thinking of my college professors, who welcomed open dialogue and debate, particularly if you had solid evidence to back up your ideas.

Oh, that sooooo did not go over well!

"Migraines!" he told me, pronouncing it like a judge making his final verdict in court.

His eyes were saying: "Bad patient! I do the thinking, and you do the listening! How could you possibly have anything of value to add here? After all, I went to medical school and you, little headachy peon, did not!”

Yeah, not like I was the one living in my body or anything.

I decided perhaps I’d chosen the wrong doctor, and made an appointment with the next member doctor on the list from my insurance company.

This scene would play itself out again and again over the next 20 years.

The Magical Mystery Pain

I'd go to a doctor looking for help with my [fill in the symptom here.] Headache. Backpain. Knee pain. Elbow pain. Ankle pain. Wrist pain. Irritable bowel. The list goes on.

(And, just to keep things interesting, sometimes the symptoms would arbitrarily come and go.)

So many doctors. At least 50 of them. Probably more.

Some doctors were nice, and well intentioned. Others were harried, or just simply arrogant, and had no time to read the carefully typed medical history/symptom list I would bring along. One neurologist even went so far as to toss my list aside saying: "I've had lots of patients bring me histories like this. I never read them."

Nice.

Once again, not like the patient could have any valuable insight into what's going on in their body...

“Take Charge of Your Care.”

Ironically, just today I read an add in a magazine from the “United Health Foundation” advising people on “How to Be a Patient.” They advise ‘Take Charge of Your Care.’ They offer the following tips: 1) Do your homework. Gather as much trustworthy information as you can on your condition. 2) Have key information with you, including your medical and medication history. 3) Take a notebook, ask questions and double-check your notes for accuracy.

All I can say to that is: “Hah! Been there, tried that, and it sooo didn’t go over well!”

OK, here I'll fully admit I did have some fun with this particular doctor, (the one who tosses out the patient histories without reading them.)

I was completely turned off by her attitude, (so much for ‘Take Charge of Your Care’ advice.) But, she was the only neurologist in town with my health plan, so I was stuck with her, (and her with me.)

So, I politely asked her if she could please give me a moment to speak, and then I began telling her what I thought caused my headaches. I named off specific muscle groups in my back, neck and head that I believed were the culprits causing all these headaches. Hoping this mention of muscle spasms, which I felt were key, would trigger a big "ah hah!" moment for the doctor... Maybe there was some medical condition out there where muscles not behaving properly, and going into spasms, could cause someone to have a lot of pain…

Um… apparently not, judging by this doctors’ reaction.

"Those muscles groups are not even connected!" she insisted.

"Yes, they are!" I politely, but firmly insisted.

She quickly left the treatment room, returning a moment later with a thick medical book. She thumbed quickly through the pages, very eager to show me how wrong I was.

"Oh," she said, studying a diagram intently, "What do you know? They are connected!"

Wow-- the backbone is connected to the neck bone. The neck bone is connected to, well, the base of the skull. The base of my skull is where my headaches are. Fix the muscle problems, and the headaches will go away. I was so sure of it!

Now, I will say this doctor was gracious in admitting her mistake. That was a start. I felt like I was finally making progress. This was going to be it-- the big breakthrough that would solve everything!

I was crushed by her next words.

"Be that as it may, I still think you have migraines. Let's try some Pamelor..."

Pamelor. Elavil. Been there. Tried that. I've already tried that particular drug three times. I thanked her politely, and never made a follow-up appointment. I threw out the prescription slip she’d handed me.

(sigh)

Another dead end.

Pick A Diagnosis, Any Diagnosis…

Next doctor on the list.

Who haven't I seen yet?

I received so many different diagnoses over the years. Each time I received a new diagnosis, I had such hope that was it! The answer that meant an end to this chronic pain, and I’d be a ‘normal’ person again!

Every time, it turned out to be another misdiagnosis. Another dead end.

“Yeah, uh huh, whatever. Just hand me the prescription, please.”

After a while, I learned to keep my mouth shut and nod my head as the doctor went on about my “migraines” or my "stress-related symptoms" or whatever the misdiagnosis of the day was.

If I didn't behave like a good little patient, then I wasn't going to leave there with a prescription for painkillers.

And, the painkillers were the only things allowing me to still lead a ‘normal’ life. Wake up with a huge headache, yet you have a super busy day of work ahead of you? Pop a painkiller.

Made weekend plans with your friends, and you wake up feeling like dog doo? Pop a pill, plaster a smile on your face, and go out with your friends. Maybe somewhere along the way the pain will relent a bit, or at the very least, being with friends might help take your mind off the pain throbbing in the background…

So, yes, I still lead a ‘normal’ life. Or, at least normal as I’d come to know it.

Crick-Crack-Go the Knees!

Other parts of my body began to betray me. My knees had been bugging me ever since my late teen years. By the end of college, I’d taken to sleeping with ice packs tucked in my socks to soothe my ankles, and ice packs wrapped on my knees to soothe my knees. I was my own little self-enclosed Igloo most nights.

It was now getting painful to ski, and I really liked skiing, so I went to see an orthopedist.

“Your knees aren’t tracking properly,” the orthopedist told me, explaining about ‘patella femoral syndrome. He told me it could be easily fixed with just arthroscopic surgeries.

"Hoooray!" I thought, something that could be fixed. So, I had arthroscopies on both knees, done at a local hospital. And, it made things... worse.

So, then I needed even bigger knee surgeries. Surgeries that involved breaking bones and putting screws in and such. I had wised up enough at this point and decided to have these surgeries done at The Hospital for Special Surgery in Manhattan, the top orthopedic hospital in the country. It was a long recovery, but in the end, my knees did seem better. Or, at least better than they were after those botched arthroscopies, at least. I still worked full-time all through these procedures, even making long overseas business trips with crutches and long leg braces. Again, I just wanted to be ‘normal’ and do normal things, and not let these nagging health problems slow down my life.

In retrospect, I wonder if my knees ever were tracking improperly. I guess they must have been to some extent, or nothing would have shown up on an x-ray. But, I'm wondering if I would have even noticed the pain, or if it would have bugged me so much, if I didn't have fibro? Guess I'll never know.

Amazing how many fibro folks I’ve met who’ve had knee surgeries, or knee issues of one type or another. So, is it a true physical abnormality affecting the knees? Or, simply a concentrated attack of joint pain making you think your knees have gone bad?

I don’t know. Maybe as more is known about fibromyalgia, and more research is done, more attention can be focused in this area. Maybe surgeries can be avoided. Just a thought.

I do have some wickedly impressive scars, though. I have a six inch scar on my left knee, and and a four inch scar on my right knee. (Just measured them out of curiosity.) Look a bit like a pirate with my scars, I do. Perhaps I could make up some fabulous story to explain these scars. Something much more exciting and dramatic than ‘patella femoral syndrome.’ How dull is that?

But, just to keep things interesting, once the knees were done hogging the limelight, my spine decided to jump centerstage.

’My turn!” decided the spine. ‘Let’s see just how high a pain threshold this chick has…’

"Et tu, back-us?"

Yes, my back not only joined the pain party, it turned out to be such a powerful force that it quickly rose up through the ranks and took over as the Grand Poohbah of All Things Pain.

Once again, I tried to look at things logically.

If my back hurts, I must have injured it. I’m young, so a simple injury will heal, or can be easily fixed.

I thought back to an incident when I tried to lift a wayyyy too heavy box of cheap furniture all by myself, (it was an assemble-it-yourself dresser from ‘Ames,’ the upstate New York equivalent of ‘K-Mart.’)

Eeeeeeh gads was that box heavy. So heavy I started to drop, and then caught it an awkward angle. I felt a sudden stabbing pain in my mid-back—pain so sharp that I was instantly nauseous. My back ached for weeks, to the point it was difficult to concentrate at work.

So, I dutifully made an appointment with an orthopedist, and asked for an x-ray of my back.

‘OK, now I’ll get some answers, get this fixed, and go back to leading my good, normal life.’

Silly, nieve Diana.

There were no answers to be found.

The x-ray revealed... nothing. Just a perfectly normal looking back.

That particular orthopedist gave me a disgusted look, like I'd totally wasted her time. (She didn’t think an x-ray was necessary, but I insisted it was because the pain was so definite, and just in that one spot, and… well, I'll never forget that look she gave me.)

Excuse me for being in pain! I left there very frustrated. And, feeling a bit foolish, too.

Maybe All I Need is the Right Pillow! (Mattress) (Chair) (Etc…)

I spent a small fortune on orthopedic pillows, special mattresses, back support cushions, chairs, heating packs, rice packs, ice packs.

You name it, if it claimed on the packaging to ease back pain (and/or headaches), then I tried it.

And, my time outside of work seemed to be a never-ending series of visits to the chiropractor.

I developed a love-hate relationship with my chiropractor.

I loved the fact that I got a little bit of pain relief after a visit. It felt so nice to have my back in place again! Sweet relief!

I hated the fact that the adjustments undid themselves in just a few hours. (The record was 40 minutes. I'd barely gotten home before tense muscles pulled everything back out of place again. Man, I’d spent more than that amount of time waiting in the waiting room!)

I felt like I should consider marrying a chiropractor, or at least moving in with one. It would save a lot of time driving to the office all the time for those damned adjustments.

You’re Promoted! Great! Pass Me the Caffeine and Pain Pills…

But, good things were going on in my life despite the weird, unexplained aches and pains. I did very well in my career, getting by on coffee and painkillers as needed.

My experience at the advertising job in New York City, paved the way to a job in international Public Relations. For five years, I traveled all over the world-- Beijing, Caracas, Hannover, Geneva, Vancouver, Toronto, Oahu, Washington, D.C., Orlando. I had a great job, I worked hard at it and did well, and I was proud of my career success.

Cool People I Met While Traveling the World

I even had the opportunity to travel a couple of times with Internet legend, Vint Cerf, as we worked for the same company. OK, maybe only the true geeks out there will know who Vint Cerf is, and why he’s so important. But, all of you have benefited from his genius.

Vint is the co-creator of TCP/IP upon which the Internet is based. (Pop quiz: who can tell me what TCP/IP stands for and why it’s so critical?)

So, Vint Cerf is the true "the Father of the Internet." (Sorry Al Gore!) Vint was such a fascinating person, and so stoked about the possibilities of the Internet. When he traveled outside the United States for press interviews, well, then he was in my territory, and I got to tag along. I loved listening to him talk to reporters about the potential of the Internet. Mind you, this was back in 1994 and 1995, the World Wide Web was in its absolute infancy. I mean, the World Wide Web only came into existed in late ’94/early ’95.

Weird to even think that just over ten years ago none of us even knew what “www” was, (beyond the initials of that gentleman’s sport of ‘World Wide Wrestling.’) Now ‘popping on the ‘Net’ is second nature to so many of us.

Anyway, I’ll stop my gushing over Vint’s genius and get back to my story…

So, whenever I was traveling with Vint on these press tours, I had him all to myself for a little while, as we’d usually do part of our traveling in a limo or taxi. So, there we were, and I had the perfect opportunity to bother poor Vint with all my questions about this fascinating thing called the Internet. He was so patient with my many questions, and explained everything so clearly, so beautifully, so enthusiastically! I totally got the Internet bug right then and there.

I began reading all I could on Internet technologies. I noticed that many of the big technological breakthroughs were coming out of this mythical place called ‘Silicon Valley’ out in California. I toyed with the idea of applying for a job out there.

But, leave all I knew in New York? I had a good job, and a cozy apartment, and a nice boyfriend, and a nice set of my friends, and my Mom and I were spending every weekend together having these fun ‘Mother/Daughter Sundays’ and… Leave all that to journey into the unknown, to a state I’d never even visited?

Did I really have the courage to just pick up and move to Silicon Valley?

Maybe…

Maybe not…

The Brain Bubble

Brain bubble? Is that some cool nickname for Silicon Valley, or something? Well, maybe, but in this case, it actually refers to something in my brain.

You see, while I was pondering this idea of moving 3,000 miles away to the farthest point I could be and still be in the continental U.S., I got a wee bit sidetracked…

I’d gone to see yet another neurologist, hoping that maybe this one held the answer to my headaches.

The neurologist did suggest something her predecessors hadn’t: ”Let’s do an MRI. It’s just in case. Not like I think you have a brain tumor or anything…”

Ironic choice of words, because the next day after I have the MRI, the neurologist calls me at work and says: “You need to see a neurosurgeon right away! Something showed up on your MRI, some type of tumor, lodged in one of your brain ventricles.”

She actually sounded kind of freaked out, which of course, totally freaked me out.

With shaking hands, I called the number she gave me and made an appointment with the neurosurgeon. She called ahead to make sure they’d see me as soon as possible, so I was able to get an appointment just three days later. Three days. That’s pretty good for getting an appointment with a top neurosurgeon. It can take months.

But, still, now I had three days to wonder about this whole ‘brain tumor’ thing. Don’t brain tumors sometimes kill people?

But, at some level, I was relieved. Now, I knew why I had such terrible headaches! I have a brain tumor! OK, take out the tumor, and then I’ll be headache free! I’d do just about anything to be rid of these headaches.

So, being more of a ‘glass half full’ type of person, I saw this as actually a good thing. (Provided the surgery didn’t leave me dead or permanently brain damaged.)

So, We’d Need to Split the Two Hemispheres of the Brain…

The day of my appointment arrived. After tossing and turning for hours, I’d finally fallen asleep. I awoke to a huge blanket of fresh snow. The TV News was announcing school cancellations and advising everyone to stay off the roads, unless you absolutely had to go out.

I called the neurosurgeon’s office, asking if he was still holding office hours.

“He has an SUV,” the nurse assured me, “he’ll be here, honey.”

Well, I didn’t have an SUV, but I left ridiculously early for my appointment, drove very slowly along the highway, following a massive snowplow, and made it to that appointment.

The neurosurgeon turned out to be a marvelously personable man. I liked and trusted him right away. He studied my MRI very carefully and then explained: “You have a cyst, which is a fluid-filled sac, in the third ventricle of your brain. It just fits in there. Now, if it gets any bigger, it will cause spinal fluid to back up into your brain, which will cause hydrocephalus, which can cause brain damage and eventually death.”

Hmmm… that doesn’t sound too good.

“But, to take it out, would be very involved. This thing is about as deep in your brain as you can get. We’d have to go in through the top of your head, between the two hemispheres. There’d be a risk of brain damage,” he carefully explained.

Well, that doesn’t sound too good either.

“Now, another neurosurgeon would probably tell you, ‘Well, you’re probably going to have to take this out eventually, so let’s just take it out now.’ But, I don’t agree with that. I knew a neurosurgeon who had one of these in the exact same spot, and he lived with it his whole life. It never grew, or changed. And, he lived to a ripe old age. Now, it’s up to you, but I recommend just monitoring this with cat scans, and MRI’s. You may have always had this cyst, and finding it on that MRI was just a coincidence,” he said.

Alarm bells started going off in my head…

“But, what about my terrible headaches!” I asked, almost in a panic.

“I’m sorry, but I don’t think this is the cause of your headaches. Your headaches would follow a whole different pattern if the cyst was the cause. Your headaches must be from something else,” he explained.

“What?” I asked.

“Well, that’s more the specialty of a neurologist. Thank you for coming in, and please call me with any questions…”

I trudged back out to my (now snow-covered) car, with my head abuzzing, and I realized I was actually disappointed. I was totally willing to have my brain hemispheres split open if it would make these awful headaches better.

The brain bubble was just another dead end.

That’s It! I’m Making Some Life Changes!

Having had those three days between the frantic neurologist phone call, and the neurosurgeon appointment, to ponder my own demise, I’d come to a startling realization…

“OK, if this brain thing kills me, am I content with all I’ve accomplished in my 26 years?” I asked myself.

No, not really. I feel there’s so much more I have yet to do, and I don’t think that doing is going to happen here in New York.

My gut instinct told me that my destiny was awaiting me on that other coast.

I decided to listen to that instinct.

California, or Bust!

So, in Fall of 1996, I quit my job, said good-bye to my kind-hearted family, and my sweet boyfriend, and everyone else I’d ever known, and packed up all my worldly possessions into a battered U-Haul truck. I drove 3,000 miles in five days, accompanied by my faithful black lab, Max.

That U-Haul truck had seen better days. The seat was frozen in one place, adjusted to furthest setting back. I had to stretch my legs way out to reach the gas pedal and brake. The windshield was cracked, so I had to tilt my head kind of cock-eyed to see around it. And, the brakes started to fail about halfway across the country, so I had to stomp on the brakes with both feet at the end of exit ramps to actually get the truck to stop.

Ration Those Pain Pills

After a few days of driving, my back screamed at the abuse, which of course, pissed off the neck muscles, which of course, ensured I had a humdinger of a headache. I still had a couple of painkillers left over from my last knee surgery. (Just the week before I’d had a screw removed from my knee, leftover from my final knee surgery. Knowing I was leaving town, the doctor gave me the OK to remove the stitches myself after ten days—which I did, perched on the toilet in a hotel bathroom I plucked them out with my tweezer. I felt very tough and rugged. A true, self-sufficient pioneer, headed out West…)

Alas, though, there weren't a lot of pills left in that bottle. I hoarded those pills, keeping them in my shirt pocket, just for morale support. I tried to wait as long as I could before taking one. I sure didn’t need them for my knee. My head hurt ten times worse than my knee.

In the end, I was breaking the caplets into quarters, combining them with Tylenol and aspirin, once again just trying to "take that edge off" the pain. (Chronic pain sufferers are all familiar with that concept of just trying to ‘take the edge off,’ as nothing seems to get rid of the pain entirely. The best you can hope is to have the pain dulled enough that you can get by.)

I had just five days to make it across country before my new job started, and there was so much snow in the forecast. I just kept driving…

And, I made it. Safely, and on-time.

California Living

The hotter, drier climate of California seemed to help my pain at first. After way too many chiropractic visits to fix the abuses of the long drive, my back seemed better than it had been in New York, and my headaches were more manageable.

Hooray! Maybe everything’s going to be OK!

Did You Miss Me? Mr. Pain Returns…

Alas, the reprieve didn't last long.

About six months after I’d arrived in California, my symptoms began progressing again. The headaches returned full-force, accompanied by their good friends, spasming muscles and back pain.

Surely These California Doctors Will Find What Those New York Doctors Missed!

So.... now , I'm thinking: "OK, new state. New life. New doctors. Silicon Valley is world famous for its brilliance and innovation! Surely some of that brilliance extends over to the medical field, and one of these brainy types will know what’s wrong with me and just how to fix it!

Silly, silly Diana.

I consulted neurologist after neurologist again.

Dead ends. All of them.

I continued to have MRI’s or cat scans every three months to monitor the brain bubble, but it never grew or changed shape. So, I started just having it monitored every two years. And, now I don’t even think about it all. It was, just that, a coincidence.

Nope, brain bubble not the culprit.

Then, why, why, why all these headaches? (And, not my stupid back again! I just went to the chiropractor! Ugggggggggghhhhhhhhhhhhhhhhhh!)

I just wanted to toss back my tanned California head and scream in frustration. (Except, I didn’t really have a tan because I worked almost all the time, and tossing my head back would just make my headache worse, so anyway…)

Musical Body Parts. What Will Ache Today?

Other parts of my body would sometimes unexpectedly join in the pain dance.

Sometimes it was a hip. Then an elbow. Then a finger. Weird.

Why was this happening? I could understand if my legs hurt the day after I took my dog for a long walk, but not after all I did was sit in my cubicle at work all day. That makes no sense!

My mind grasped at any sort of explanation, even the most bizarre…

Was I sleepwalking and injuring myself without realizing it?

Was I being abducted by aliens at night, and their weird experiments left no marks on my skin, but did leave me aching and sore. And, they were experimenting on different parts and that’s why the pain moved around. And, their experiments were very tiring, and sometimes lasted all night (although they always wiped my memory) so that’s why I’d wake up so groggy and sore and tired and disoriented some mornings…

Go ahead and laugh, but the alien explanation made more sense than this weird, unknown chronic pain that no doctor could diagnose, and no medication seemed to help…

Listen to your Body

Still, I did what I thought was the right thing… Listen to your body’s signals. Seek help

I mean, isn't pain a signal from your body that something's wrong?

Surely, there was someone out there who could tell me what was wrong!

I fantasized about the day I would get an accurate diagnosis.

But, instead, every doctor’s visit sounded like ‘instant replay.’

"Nothing's wrong with your [hip] [elbow] [wrist] [finger] [insert random body part here]," all the doctors would tell me.

Some even gave me that look, the look I felt implied I was just another hypochondriac wasting their time, or that I was just making up these stories of chronic pain to scam for painkillers.

And, truth be told, sometimes I felt like all those things. A pain pill junkie. A hypochondriac. I mean, how else could I hurt in so many places, yet have “nothing wrong?”

I even read self-help and improvement books, thinking I was a flawed person and that’s why I felt chronic pain.

And, truth be told, I was terrified of leaving the house without a bottle of pain pills. What if I was suddenly hit with really bad pain, and then got caught in terrible traffic, and couldn’t make it home for a long time… Pain pills were my American Express card. I didn’t leave home without them.

You’d Better Hide Your Pain Away…

But, despite all this, I kept my pain hidden from my co-workers, secretly popping pain pills in my cubicle when no one was watching. My career was going well, and people seemed to like me, telling me that liked my “positive attitude” and my “enthusiasm” and my “creativity.” Hypochondriac pain pill junkie didn’t fit in with that other image. So, I hid my “dark side.”

I worked hard, switched jobs a few times, and finally ended up at a terrific company with outstanding technology, perfectly poised to ride the rapidly expanding Internet boom. I did very well at that company, and loved my job. I kept going, battling fatigue and pain with caffeine, and my ever-present pills, (which I now kept in my pocket, just so I always knew where they were at all times.)

I didn’t have much free time outside of work, but what I did have, I spent at the beach. I’d always loved the ocean, and now I lived just a half hour from the beaches of Santa Cruz. I started boogie boarding, loved it, and then moved on to surfing.

I fell in love with surfing right at the moment I rode my first wave. It was like walking on water. What an incredible feeling! I never felt closer to God than I did riding nature’s awesome power on my goofy, second-hand surfboard.

Surfing turned out to be a good exercise for someone with joint pain. It didn’t hurt any part of me. (OK, except for carrying that heavy 30 pound surfboard up and down that monstrous 6-flight staircase leading to my favorite beach. Damn those stairs…) But, the surfing itself stretched and relaxed my muscles, and I just adored the sport, so I kept at it, even waking up at 5 AM on the weekends just to catch those pristine early morning waves. (This from someone who has a terrible time waking up in the mornings!)

I Met a Hawaiian Surf God

Surfing soon brought a most unexpected blessing.

Six weeks after I started surfing, the most handsome man I’d ever seen paddled by me on a surfboard. He had dark hair, gorgeous dark eyes, and golden, brown skin. Very Hawaiian looking. He was all rippling muscles, perfectly outlined in his skintight wetsuit. And, he surfed like a Hawaiian Surf God come to life! He was all fluid and grace on his surfboard. I watched him surf with my jaw dropped. He was so gorgeous!

Want to Have Lunch Sometime?

As it turns out, he was checking me out, at the same time I was ogling him! After catching that perfect wave, he paddled right over to me, and started chatting up surf talk, about the waves, the tides, what type of boards we were each riding, etc. etc.

Soon, we were catching waves together, surfing side by side, laughing. Then, we were going out to lunch together…

Then, we were taking a walk down the beach together, still laughing, and looking into each others’ eyes…

I knew that very day that I had met “the one.”

We were married two years later in Hawaii.

And, my boyfriend/fiancé/husband was so kind to me, and so understanding of my odd aches and pains. He would carry my surfboard up and down that dreaded six-story staircase to the beach. And, he was very understanding about my headaches, and pain pills, and frequent trips to the chiropractor. He was, simply put, a most amazing man.

Alright, No More Kidding Around.

Now married, with combined incomes, I decided I was going to "throw some money" at my headaches and backpain. Surely enough money could solve just about anything! My company had done well with their I.P.O., and I now had enough money to try some alternative treatments that my insurance company wouldn’t cover.

Friends gave me advice and recommendations and things that had worked for them. Each time, I thought: “Yes, this will be it! This is going to work!”

I think I tried just about everything.

I went for weekly deep tissue massages. The massage therapist, a strong, kind-hearted woman from the mid-West, told me my back was “one knotted ridge of muscles.” She dug deep, using hot rocks. I told her to apply as much pressure as she could. I was willing to put up with any amount of pain in the short-term if it could make things better in the long-term.

But, despite her gallant efforts, and her many hot rocks, my muscles always managed to wind themselves back up again, tight as ever.

Maybe acupuncture would be the answer?

I did feel a bit better after the first visit. Then, the second and third visits were downright scary. I realized my acupuncturist was manic-depressive, and on her ‘depressive’ days she jabbed those sharp pointed needles in with a vengeance. I even bled, which I’m not sure you’re supposed to do with acupuncture.

I later tried acupuncture with someone else, someone a bit more emotionally composed.

Nothing.

Maybe some ancient, magical, herbal concoction from the Far East would be the answer?

I tried all manner of herbal remedies—things friends recommended, things I read about online, even things I read about in highly regarded medical journals like “Reader’s Digest” and other such supermarket checkout line reading material…

Anything, anything, that could possibly be the key that would finally make me better.

Dead ends. All of them.

So, I continued to just get by on pain pills, and the short-term relief I’d get from a chiropractic visit. Soooo many chiropractic visits…

Then, I Peed on a Stick

Both my husband and I wanted kids. We’d talked about it at length when we were dating. It was such an important issue to both of us. We really wanted to be parents. We spent our first year of married life just enjoying being a couple, taking trips whenever we could. Then, it was time to get going on the baby plan…

We started trying to get pregnant on Valentine’s Day 2001. We must have been really good at it, because two weeks later I peed on a stick and that magical circle appeared…

We were expecting.

I was elated to be pregnant. But, I was terrified, too. I would now have to go nine months (or more, if I breastfeed), without painkillers.

I was still working full-time, often working overtime. How could I make it through bad spells of headaches without painkillers? And, the ob-gyn said no more than ½ cup of coffee a day. What will I do when I’m hit with a bout of overwhelming fatigue, and I’m on deadline to complete a project?!

Just Take it One Day at a Time

I decided I would just take it one day at a time. It was only nine months, and I’d already been coping with chronic headaches, and other pains, for 12 years. I could do this…

I saw the chiropractor even more now, desperate for any kind of relief that didn’t involve taking pills. I gave up my lunch hour at work everyday to see the chiropractor, eating a sandwich in the car as I drove back to work.

But, still, I hurt. And, I missed the relief of the pain pills. And, truth be told, I wasn’t really enjoying being pregnant. And, this then made me feel guilty. Shouldn’t pregnancy just be one big glow of joy, with just some swollen ankles and morning sickness? That stuff was a piece of cake (which I ate plenty of) compared to the chronic pain that relentless plagued me day in and day out.

I smiled and pretended I was happy as friends threw me baby showers and such, and went on and on about the baby.

But, secretly I was thinking: "Just let these nine months go by quickly so I can take painkillers again..."

I hurt so much…. It was hard to concentrate on work.

During my eight month of pregnancy, I ended up a super hectic period at work. I was constantly on the move, working at almost a frantic pace. And, I ended up going into early labor.

I was actually standing in traffic court when it happened. I’d gotten a ticket for driving 38 m.p.h. in a 25 m.p.h. zone. But, I was lost, and had to pee, and knew there must be a public bathroom around someplace… The dour-faced cop hadn’t understand about me having to pee, but I was sure if I presented my case to the judge, I could make him understand.

But, when it came my turn to see the judge, I couldn’t concentrate at all. All I could think was I was having terrible stomach cramps, and this was a terrible time for my irritable bowel to be kicking up…

Turns out it wasn’t irritable bowel at all. It was irritable baby.

A few hours later, my husband was driving me to the hospital. I was in labor.

OK, so the baby will be a little early, but I’ll be done with being pregnant, and I’ll have my baby!

My ob-gyn ordered that I be given medicine to kick me back out of labor.

I’m still not sure if he did it just because the baby was a few weeks early, or because he didn’t feel like coming out to deliver at that time. But, the medication did its job, and I was kicked back out of labor.

Four more weeks to go. Four more weeks of pregnancy.

But, it wasn’t a complete loss. I was ordered onto full bed rest for the duration of my pregnancy.

Bed Rest

Bed rest was nice. I was alone during the day while my husband was at work, but it felt nice to not be expected to do much. I found I was good at not doing much.

But, after being kicked out of labor, my son’s feelings must have been hurt. Because he never kicked me back into it again…

I was finally induced, weeks later, and had a long, uncomfortable labor.

(When you’re induced, you’re not allowed out of bed, so you can’t stand during the cramping, or walk around to ease the pains, or sit in the whirlpool, or any of those other lovely pain-coping strategies we’d spent so many hours in childbirth classes learning about.)

The baby was turned “transverse and posterior,” which means backwards and sideways. I’d wanted to make it through labor ‘naturally,’ but about eight hours into it, the pain was so severe that I was crying and gasping for air. Turns out I was having ‘back labor’ from the baby pressing up against me the wrong way.

Forget natural! Get that epidural lady in here NOW!

There was some initial discomfort in getting the epidural in, (you try holding perfectly still, hunched over, when you’re in the middle of labor pains…) But, once that numbing medicine kicked in, it was bliss. How nice to not feel anything! Labor progressed quickly after that point, and the rest of the child birthing process was a breeze. Maybe I should get myself a home epidural kit or something… Being numb was actually very pleasant. Sure beats feeling pain all the time.

Welcome Baby!

I fell madly in love with my son the moment I laid my eyes on his slimy, goo-covered little person.

I quickly decided that yes, I would breastfeed, even if this meant longer without painpills. Somehow, I would get by.

I’ll never forget the look in my husband’s eyes as he held his son for the first time. It was absolute heaven just seeing that look.

Surely, everything will be OK now. I’ll just focus on the baby, and not think about the headaches, and the backpain, and all that silliness. I’m a Mom, now. I don’t have time to be in pain.

“FMS Crash”

There’s a phrase I see often on the Fibro Support Group. People refer to their “FMS Crash.” I can only assume this means the time when their symptoms went from “nagging” to “overwhelming” and suddenly their life spiraled out of control.

I can trace exactly when my crash happened.

When the baby was just a few months old, we moved from a crowded neighborhood in San Jose to a lovely home overlooking the beach in Morro Bay. Being surfers, we both loved the ocean, and we both had jobs where we could do a fair bit of telecommuting. When one of us had to go to the office, we would do a ‘day trip’, getting up at 4 AM to drive the 150 miles back up to Silicon Valley (to get ahead of traffic,) work a full day at the office, and then leave the office sometime after 7 PM (to again avoid traffic) and drive the 150 miles back home…

One week, I had to make that trip three times. I had meetings on Monday, Wednesday and Friday. I guess I could have stayed with a friend and just stayed up there all week, but my baby was still little, and I was still breastfeeding, and my husband had work to do, too. He couldn’t spend the whole week watching the baby alone. That would be incredibly selfish of me. So, I did that incredibly long, exhausting drive. By the last day, I was so tired I was drinking concentrated caffeine drinks trying to stay awake behind the wheel, and I still had to pull over at a rest stop, where I fall asleep almost instantly. I awoke to a homeless man peering in through the window at me. (Yes, the windows were shut and locked. I was exhausted, but not careless.) Needless to say, I panicked, driving away from there as fast as I could, the adrenaline keeping me awake the rest of the way home.

Still, I was managing. As long as the pain didn’t get any worse, I could handle it. I could do this…

Then, the pain got worse.

Much worse.

Someone on the Fibro Support Group called fibromyalgia the “irritable everything syndrome.”

That’s a pretty good description for what was going on in my body at that time. I seemed to be just one big ache from my head to my toes, with no explanation for any of it. Even my innards were on strike. I had terrible ‘tummy troubles,’ as the polite term goes. To be not so polite, I was always either constipated, feeling horribly bloated, and well, backed up to high heaven. Or, I was doubled over in the bathroom with terrible cramping and diarrhea.

I eventually started bringing my notebook computer and the baby carrier into the bathroom with me. If I was going to be in there forever and a day, I might as well get my work done, and entertain the baby and…

And, the Mother of the Year Is…

And, things got worse again.

No matter how much sleep I tried to get, I was also so exhausted. I had no energy. No ooooomph. No anything.

I had no energy to play with my son. I wanted to, but it seemed all I could do to just get through the day, feeding him, changing him, keeping up with my work, taking care of our pets, and taking charge of the house during my husband’s frequent business trips. Play with him after all that? I’m just glad I’m not dropping him out of sheer exhaustion!

This wasn’t what I imagined motherhood would be like. I’d thought I would be a great Mom. I felt more like a mechanical robot, tending my baby’s needs, but surely not giving any ‘value add’ to the experience. In short, I thought I was a bad mother.

Oh, Was That Due Today?

I also found it increasingly difficult to focus on work. I’d switched over to a job-share position after the baby was born, so that I could cut my hours back even more, and have a very flexible schedule. My job-share partner was a good friend, someone I’d worked with before.

I began to feel guilty. Like I was letting my job-share partner to more than her fair share of work. She never complained, but still, I didn’t feel like I was pulling my weight. (And, there was quite a bit more of me to pull around these days. I’d manage to pack on the pounds during my pregnancy.)

Gone was my energy, and my enthusiasm. The CEO of our company had once nicknamed me: “The Spirit of the Company.”

I didn’t feel like the spirit of anything anymore.

I was a shell of my former self.

I tried to hide this from people, trying to be the chipper, bubbly person that was expected of me when I made trips to the company. I didn’t want people to know what I’d become. I didn’t want anyone to think less of me.

But, the truth is, I sure thought less of me.

“You Look Like the Picture of Health”

As poorly as I felt, I looked like the picture of health. My cheeks were rosy, and looking back to pictures taken at that time, you would never know that inside I felt like I was dying.

We Regret to Inform You that Due to Company Circumstances…

Silicon Valley went from boom to bust, and I was laid off. It didn’t happen all at once. My job-share position was in Human Resources, and I had to help the company through eight rounds of layoffs before my name came up in that ninth round. And, I helped with that round, too, ironically helping with all the logistics of laying myself, and my jobshare partner off, along with a whole bunch of other people.

Part of me was secretly relieved to be laid off. I could collect unemployment for a while, maybe rest and recoup my strength, and get back to feeling like me…

But, another part of me was very saddened to drive away from that company I’d so enjoyed working for. I was teary-eyed as I watched the corporate headquarters disappear in my rearview mirror. (I’ve never once gone back. Not even for a visit. Strange how you can get attached to a job…)

I truly felt a deep sense of loss. For so long, I'd been so good at my job, and knowing I was a good worker was always so important to me. It seemed to define who I was as a person—the culmination of my education. And, work had always provided another benefit—it gave me something to focus on besides the pain.

Still, being that ‘glass half full’ person, I told myself: “Well, this forced vacation might turn out to be just what I need! I’ll get better and then start anew someplace else.”

But, I never did.

Because rather than getting better, I began a steady slide downhill.

Oh, look! Shiny Object!

Entertaining a baby isn't, exactly, well, intellectually stimulating. "Oh, look baby, shiny object! Wow!" OK, now, what do we do for the other 23 hours and 59 minutes of this day...

Life began to seem like a whole series of bland tasks that all seemed to involve bending and stooping, which irritated my back, which made my headaches worse...

In my younger days, I had this image in my mind of what kind of mother I’d be. I’d read lots of stories to my child, making up funny voices for all the characters. Heck, I’d write original stories with my child as the main character. We’d do puppet shows. And, art. And, all manner of creative crafts. I was going to be the most fun Mom ever.

I wasn’t those things at all. I was a bad Mommy. At times, I’d try to read to my son, but he had a short attention, preferring to throw the book than read it. And, I didn’t have the energy to do great voices, and act the book out and make it super interesting for him.

And, I didn’t write him any stories.

Or, do any puppet shows.

I felt like a failure at motherhood. No career anymore. Lousy motherhood. What’s next, my marriage?

“You’re Not the Person I Married.”

A distance was forming between my husband and I. I didn’t have the energy for sex. I forced myself to do it once in a while, but I wasn’t overly enthusiastic. I tried to do my share of housework, but sometimes I could only fold a couple of shirts before my arms ached so much I had to stop. I’d leave the job half done.

My husband would come home from work, exasperated I hadn’t planned anything for dinner. And, the baby’s toys were strewn all over the floor. If I were him, I would have been fed up with me, too.

The pain grew steadily worse, and while I didn't realize it at the time, I began to get depressed. I felt sad almost all the time, and I didn’t know why. Did I have everything I ever wanted? A loving husband? A healthy baby? A nice house? I didn’t even have to work right now. I could be spending the extra time doing what I loved to do most—writing. But, good, creative writing requires energy, and I just never seemed to have enough.

I was always glad when each day was over and I could just go to sleep again.

I had everything I'd ever wanted, an amazing husband, a healthy baby, a nice house, but I was still moody and irritable and sad. Whenever my friends called, I made excuses to not go out, and eventually they stopped calling... I hardly ever surfed anymore. It seemed I didn’t do anything anymore.

One day, my husband told me: “You’re not the same person I married.”

And, he was right, I wasn’t.

I feared he would divorce me. And, I didn’t blame him. I would have divorced me, too.

Please, Doctor, Somebody, Anybody, Help Me…

I did still try to get help. I started seeing a psychiatrist, wondering maybe if I was simply crazy and the pain was all in my head. Talking to the psychiatrist was enlightening. I understand my family and my childhood better than ever. And, I also realized there was nothing there that could be causing all this pain. This pain was not pyschomatic. The psychiatrist agreed with my findings, and encouraged me to keep looking for the true source of all this pain.

I went back to my general practioner, not sure where else to turn. My general practioner referred me to a pain specialist, and the pain specialist ordered MRI’s of my head, neck and back. There were some minor abnormalities in the MRI’s, old traces of injuries. Some stenosis (spinal cord narrowing) in that mid-back area where I felt all that pain. Some wear and tear on the vertebrae in my neck. It was enough that I was referred to see a neurosurgeon.

Hah! Now we’re getting somewhere! I seized on this new piece of information, thinking it was the answer.

OK, all the nerves for the whole body run through the spinal cord. The spinal cord runs through the back, and I’ve got some crud going on in my back, so maybe this is the culprit! It may not have shown up on that x-ray all those years ago, but here it is in black and white on an MRI! This is it!

My Visit with the Neurosurgeon

It took a few months to get an appointment with a neurosurgeon, but the whole time, I kept up hope that this would solve everything. I’d get my back (and maybe my neck) fixed, and then everything would be OK again. I could go back to being me. Feeling better would save my marriage, I was sure of it. Then, I could be the person my husband married again. I wanted so desperately to be that person.

I went to that neurosurgeon, clutching my MRI's, and full of hope.

I ignored the little voice that said fixing my back wasn't going to help with all those other bizarre and random symptoms that kept popping up, but I ignored that voice. At least if the back pain, and (hopefully) headaches were better, than I could cope with the other stuff more easily. It would be enough. It would have to be enough.

My husband even went with me to the neurosurgeon appointment. We both had our hopes pinned on this finally being the answer.

Fix the problem. Feel better. Right?

Wrong. No fixes for you. Not today. Maybe not ever.

"These injuries could not account for the level of pain you are describing," the neurosurgeon said calmly, after carefully studying the MRI’s.

No! No! No! My mind was screaming. Look again! This has to be it! Fix me, PLEASE….

And, he said something very wise to me, although it would be several more months before his words would sink in to my (now often foggy) brain. "There is something else going on here."

"What?" I asked, maybe this ‘something else’ was the answer!

"I don't know, something," he said.

Oh.

And, that was it.

He recommended stretching exercises. Yeah. Been there. Tried that. Like a thousand times. He also recommended wearing a hard cervical collar at night, and when my headaches were really bad. I couldn’t sleep with the collar on, it was too uncomfortable, but I did sometimes where it during the day when no one was looking. I was so embarrassed by the big, goofy collar that I closed the blinds before putting it on. I looked like a whiplash victim with the thing on—you know, the classic hypochondriac. Not sure if it really helped or not, but at least I felt I was doing something to help my poor aching head. Just take the weight of my head off my neck for a little while, maybe then those muscle spasms would calm down.

Or not.

September 10, 2003

Then, something else happened. Maybe it was fate. Maybe I needed to get much worse before I could get better...

I broke two bones in my foot while helping out at the scene of a bad car wreck on Highway 101, right outside San Luis Obispo.

I saw the accident happen. Two teenagers in a compact car switched lanes too quickly and sideswiped a BMW. Their car richoted off the guardrail, spun off the highway, and slammed into a tree, gas tank first.

By the time I’d pulled over to see if I could help, the car was already on fire.

Alex was asleep in his carseat, so I left the car on, with the air conditioning running, praying no one would steal my baby while I stopped to help. I grabbed my first aid kit out of the trunk and went running toward the wreck.

The whole time I'm thinking: "This is probably the stupidest thing I've ever done. I am running TOWARD a burning car."

I was running so fast I didn't see the piece of broken pavement that caused my foot to roll in an unnatural way. I felt the pain, but had long ago learned to tune out pain so I just kept running, thinking my "sprained" ankle could wait. I was focused on getting those people out of there before that car exploded. And, took me with it. I wondered if I'd parked my car far enough away, and if my baby was in danger. I accepted that I was putting my life in danger, but not that I could be endangering baby Alex.

No, even if the car explodes, it won’t hit my car. I’d parked a good distance away. He would be OK.

The whole story of what happened at that accident scene would take a while to tell, and I do promise to tell you some time, as it’s a tale worth telling. But, for now, let’s summarize to say—I was able to help save on person who had head trauma and was going into shock when I started to treat her. She lived. The other person in the car died, a 17-year old girl who’d just purchased her first car.

I waited a day, hoping the pain in my foot would get better, but it kept getting worse, so finally I went to the emergency room. My husband was away, again, on a business trip, so I spent hours waiting, trying to keep a restless, crabby baby entertained without walking on my painful foot.

Hours later, I had an x-ray. But, the doctor assigned to me made a big mistake. Someone later told me they had that particular doctor has a cocaine problem, but who knows? For whatever reason, a big mistake was made.) He mixed up my x-rays with someone else's, cheerfully patted me on the back and said: "Good news! Not broken! Just a bruised tendon! The best thing you can do is walk on it."

'Uh oh, you're the doctor. But it sure feels broken,' I thought, wondering at the grating sound I heard when I walked.

How overly trusting I still was. Still trusting doctors to tell me the right thing.

I'll fast forward again. Three days later I went back, picked up the x-rays for myself, read the radiologist report, saw that a huge mistake had been made, and went to another doctor. But, my foot never healed quite right. (Still hasn’t.) I was on crutches for months. I eventually got the cast off, but my foot still didn’t feel right. Something was definitely off. Right before Christmas, I felt something pop in my foot again. X-rays were negative, so I requested (actually demanded) an MRI. The MRI showed a ‘non-displaced fracture.’ The orthopedist said something about one bone now resting on top of another where it shouldn't be. I was supposed to see a foot specialist, but never did. Life was just spiraling out of control at that point…

The Darkest Days

That time between September of 2003, and February of 2004, marks the darkest period of my life.

It was a bad, bad time.

All those months on crutches totally irritated my back. Plus, with my husband away on business most of the time, I was on my own to carry the baby around. I scooted up and down the three flights of stairs in our house on my butt, carrying the baby and pushing my crutches ahead of me.

My back didn't like this any of this extra abuse, and started going into major spasms. The muscles would clench up so bad I would just collapse on my bed and start crying. My son would cry, too, confused as to what was wrong with Mommy, and why I wouldn't pick him up or hold him.

I Just Want to Be ‘Comfortably Numb’

I’d started seeing a pain specialist, who recommended "nerve blocks."

Hey, if it blocks the pain, I'm all for it.

I kept thinking of the Pink Floyd song "Comfortably Numb." Not feeling anything sounded pretty damned good to me. I was tired of feeling.

So, every month, I went under full anesthesia, and had these shots in my mid-back, and at the base of my skull (occipital ridge.)

Did they help? I’m not sure. Sometimes the shots seemed to make me feel better, and othertimes worse. But, I kept going for the shots anyway. I didn't know what else to do. Plus, it was nice to be numb for those couple of hours after the procedures. I'd be completely numb from my spine to the top of my head for about five hours after each procedure. Some kind of side effect from the procedure.

Sensation would always return, though. I wasn’t ‘Comfortably Numb.’ I sure wanted to be.

In addition to the nerve blocks, Mr. Pain Doc wrote me lots of prescriptions for pain killers, both Vicodin and Ultram. For the first time, I had oodles of painkillers. All I wanted. I didn’t have to even ration them. So, I took oodles of pills. Called them my ‘happy pills.’

But, My Happy Pills Weren’t All That Happy

Despite taking all those happy pills, I was miserable. I was making my husband miserable. I could tell. I think we were both relieved when he went away on his business trips.

Our son was the anchor that held us together.

I wondered if he divorced me, who would get custody of our son? If he wanted to make a case in court that I was a bad mother, he probably could have made a pretty good one. After all, I took all manner of pain pills all the time, and I yelled at my son when he made too much noise, and, well, in my opinion, I was as useless as a mother, as I was as a wife.

Pills, Pills, Pills

The more depressed I got, the more happy pills I took. Sometimes, when the painkillers failed to "take the edge off," I took twice what I should.

Plus, I was on tons of other meds. Neurontin for nerve pain. Serzone for depression. Muscle relaxants. And other meds whose names I can’t even recall anymore. 13 meds total everyday. 13. What an unlucky number.

Down, Down, Down…

My depression deepened, although I didn't recognize it as depression at the time.

I even considered suicide. Life seemed to have no meaning anymore. I decided my husband and son would be better off without me. I was a miserable, useless person, who could no longer make my husband happy. When I took my son to the playground, I didn’t romp around with him like the other Moms. I sat on a bench, staring off into space, hoping nobody would ask me to move a muscle. Moving hurt. It was all I could do just to sit up.

Perhaps if I’m out of the picture, my husband can marry someone better. Someone who would be a better wife to him, and a better Mom to Alex. They both deserved better than me.

Off a Cliff

How should I do it? Drive my car off a cliff? We lived close to Big Sur, and there were these massive, sheer cliffs with jagged rocks and angry ocean below.

My wry sense of humor joked: ‘And, you’d have such a pretty view on the way down…’

Should I leave a note to my husband, explaining why I did it, and encouraging him to remarry?

Or, would it be more merciful to my husband and son to just let him think it was a random accident? Whom could I get to babysit while I was out… well… ending things.

Dying Wishes (Not Mine, Actually.)

There was still one stubborn little part of me that hoped and prayed and believed in the future. I’d started going to the Catholic Church in town when my Dad told me it was his “dying wish that at least one of his grandkids be baptized.” Now, my Dad has terminal prostate cancer, but has been in remission for a while. He pulls out the “dying wish” card when he wants something. Well, I love my Dad something fierce, and that “dying wish” bit works on me. So, I joined the local church and started looking into the logistics of getting Alex baptized.

I didn’t stay at the Catholic Church too long. I liked the priest, and had a great talk with him after the car wreck incident, and he told me it wasn’t my fault that the other girl had died. He said I wasn’t Jesus, and it wasn’t up to me to be saving people. I did feel better of that. Absolved of responsibility in having failed that girl.

But, it wasn’t the right church for my son. There was no nursery, and my son was too wiggly and squirmy to sit through a church service.

Through the Mommy network, I heard about another church in town, the Methodist Church, that had a great toddler program. A nursery. A free, three-hour activity program for toddlers every Friday. A kid-friendly church.

I felt like I fit in there from the moment I arrived. Everyone was so welcoming, and happy to see me there, that I wanted to come back.

(Secretely I thought: ‘If they knew the real me, they wouldn’t be so glad to have me as part of their church.’)

But, I didn’t tell anyone I suffered from chronic pain, or took lots of pills, and when they invited me to join the choir, I gladly accepted. I’d always loved to sing, and I’d loved traditional choral music ever since I’d sung “Handel’s Messiah” in the high school chorus.

That church helped me through my very darkest moments.

No matter how bad I felt, I always forced myself to go to choir practice. And, I always felt better after I sang.

No matter how bad a headache I woke up with, I always still went to Sunday services. And, when we had a moment of silence for prayer, I’d pray as hard as I could…

Please God. It’s me, Diana. Please help me. I don’t know what else to do. I hurt so much, all the time. I just want to be me, again. I don’t know who I am anymore.

Part of me (maybe the Catholic part) felt guilty for praying for myself. Weren’t you supposed to pray for other people? Wasn’t that the altruisitic thing to do? Heck with that. I needed to help myself before I could help others. I was at the end of my rope.

Some Sundays I prayed so hard that tears came to my eyes. Tears of despair. Tears of hope. I don’t know. I was all caught up in emotion. I’d keep my eyes closed long after everyone else had already raised their heads, afraid someone might see my tears.

Crazy ‘ol Diana.

Praying did make me feel a bit better, though. I at least felt like I was doing something.

After a while, I started praying at home, too.

I’d pray when I woke up in the morning. After the pain pills had kicked in, (I kept them by my bedside now,) I’d kneel the best I could next to my bed and pray.

Please God. Show me the way. I don’t expect you to fix me—poof! Like some of the miracles Jesus did. I know that you help people who help themselves. I just need a kick in the right direction. Please…

I prayed at night, too, as I watched the sun set over the ocean from the balcony of our house. No matter how miserable I was, I still always took the time to watch the sun set, and then watch the first stars peek out.

Starlight, starbright, first time I see tonight… Please, just point me in the right direction. I don’t want to die, but if this pain keeps getting worse, I don’t know how I can go on living. Please, just some direction. I’ve seen so many doctors, and all they have for me is pills, and the pills aren’t helping. I just keep getting worse. Please…

I’d end my starlight wishing with an ‘Amen!” too, just to be on the safe side. Surely between the power of prayer, and the power of first star wishing, I’d get some kind of answer!

One Fateful Morning

I was feeling crummy, as usual, one dreary, January morning. My son was restless, and making much too much noise in the house, (ow! my aching head can’t take that noise any longer!) So, I took him, and our two dogs, to the beach to run around.

I tried to massage out the knots in the back of my neck, hoping it would ease some of the pain in my head. I wondered if I should call the chiropractor. Again. And go over there. Again. I hated going to the chiropractor now. I was always kept waiting forever, and my insurance didn’t cover the visits anymore, and the adjustments always undid themselves so quickly now, so what was the damned sense of it all?

‘Build sandcastle Mommy,’ said my son, tugging on my hand and hopefully handing me a bright red shovel.

‘No, sweetie. Mommy’s tired today. I’ll watch you from here,’ I said, handing him back the shovel.

What a miserable S.O.B. I’d turned out to be.

What had happened to my promising life? It seemed such a joke to me that my classmates had voted me "Most Likely to Succeed."

Succeed at what? Being a lousy wife? A lousy mother? An unemployed worker?

I sure had accomplished all those things alright.

The Answers are Out There

"Don't give up," said a voice suddenly in my head.

It didn't much surprise me I was now hearing voices. I'd already come to the conclusion I was crazy. I mean all those doctors visits, and none of them really knew what was wrong with me, so the problem must be me. I’m simply crazy. Crazy 'ol hypochondriac me! I should just end it all. Put everyone out of their misery.

"You must keep trying," insisted the voice. "This is not the end of your journey."

"But, I've seen every doctor out there, and they all say there's nothing wrong with me!" I silently argued.

"Then, you must figure it out yourself. You’re intelligent. Use that brain! Solve this mystery!” demanded the voice.

"Hah! I used to be intelligent. Not anymore. I can barely hold a thought anymore,” I argued. (Just that morning I'd burst out crying over my bowl of cereal, telling my husband my mind was so foggy that I'd ‘turned stupid!’)

"Try! The answers are there!" the voice shouted at me. I felt like Luke Skywalker arguing with Yoda. But, I did feel a glimmer of hope. What if the answers really were out there? What if I really did have a bright future ahead of me?

I named the voice: Brain Yoda.

I told Brain Yoda I would try, and satisfied with that answer, he was quiet once again.

Prowling the Night

I began forming a plan of attack… I was sleeping so poorly at night, what did it matter if I spent those sleepless hours doing research instead?

No one would know. I'd taken to sleeping in the guest room every night, thinking the firm mattress in there was better for my "bad back." But, truth be told, it was more because my husband and I were becoming so distant from each other. Our mutual love for our son seemed to be all we had left.

I began prowling the night, spending hours cross-referencing my symptoms against known diseases. At least now when I was exhausted and in a fog during the day, I felt like there was at least some reason behind it.

Obsession…

I was a woman obsessed. I began filling notebooks with pages of notes, writing down diseases and symptoms, following up on leads.

"Yes! Yes! Keep going!" urged Brain Yoda.

"But, I'm so tired..." I would sometimes argue.

"A true obsessed woman feels no fatigue! Onward!" commanded Brain Yoda.

And, then, one rainy winter's night (or very early morning, as the case was,) there it was... an exact match for all my symptoms! And, symptoms I'd never even thought were related in any way... my chronic yeast infections (itch!), the weird noises my jaw made (click!), those terrible bouts of diarrhea and constipation (iwwww....), the chronic fatigue (yawn), the bouts of sleeplessness (Bring on the Nyquil!)

Fibromyalgia! How is it I never knew this disease existed?!

Why didn't anybody tell me?! Brain Yoda, why didn't you tell me!

Over 50 doctors over the course of 18 years, and not one itty bitty little mention of "Fibromyalgia." I could have been the poster child for this disease!

I got angry, and then I got over it. (OK, sort of over it. The hurt runs deep.)

I saw a rheumatologist, who confirmed the diagnosis, but shook his head sadly and told me:

"Fibromyalgia is incurable and untreatable. I can give you painkillers and anti-depressants, but that's about it."

I thanked him and never made a follow-up appointment. I'd been on those anti-depressants. I was already taking way too many of those painkillers. And, I was still so sick. If that's all medical science had to offer me, then I would figure this out on my own. I could accept the "incurable" part, but not the "untreatable" part. Surely, there was something out there that would make me better.

I had new faith in my abilities. I felt empowered.

I decided to get off all the medicines I was on, except for the pain killers and the muscle relaxants. All the nerve stuff, and the anti-depressant stuff, and the anti-inflammatories, and allergy stuff, and all that crud, was going to go. One by one, I tapered off the medications and then stopped taking them altogether.

Neurontin was awful to taper off of. Neurontin works by affecting the serontonin levels in your brain. It helps you sleep. Stop taking it and your sleep patterns go all to hell. A terrible thing for someone already suffering sleep problems. I tapered off it over four weeks, and still, once I stopped taking it, I stopped sleeping at all. After three days, I was so exhausted I started crying. I called the doctor, who recommended I take a sleeping medication for the next week, but no longer than that, or that medication would cause sleep disturbances, too .

Great, take one drug, to get off another drug, and then that drug…

But, I did it. I got of all those meds.

I remember how empowered I felt when I dumped almost a full bottle of Ultram into the trash compactor. Over 100 pills. I then dumped icky garbage over it so I wouldn’t be tempted to pull the pills back out. I suspected Ultram was a culprit n my depression.

I had three days of withdrawal from Ultram, a drug the manufacturer claims is non-addictive. Hah! Like we can really trust the people who make all the money from the drug to tell us the full truth…

The more drugs I got off of, the more empowered I felt. I moved back into the Master bedroom and started sleeping next to my husband again. I still had chronic pain, but now I had something I hadn’t had in many months, hope.

The Great Guinea Pig

I tried lots of natural remedies. Read books on Eastern treatment philosophies. I turned myself into a human guinea pig. I kept meticulous notes, trying herbs one month at a time, chronicling my reactions to each treatment.

Sometimes I’d feel a little better, then worse again. Not enough. I needed something more.

What else could I try?

"The answers are out there!" reminded Brain Yoda, (who was starting to sound a lot like Agent Mulder from The X-Files.)

I started haunting the Fibromyalgia Internet boards. What a joy to be able to discuss all these icky body symptoms with people who not only understood, they had them, too!

"You're constipated, too! Wow! So, what do you do for it? What works? What doesn’t?"

Then, somewhere between aching joints and plugged up bowels, someone started a discussion of this bizarre sounding treatment: the "guaifenesen protocol." The what-whatta protocol?

I wrote it down, and looked it up on the Internet. Some websites swore by the protocol. Some swore it didn’t work. But, I was intrigued enough to want to try it. After all, guaifenesen was a generic drug, and the doctor advocating the protocol makes no money on the sale of it. It wasn’t at all like some of the $100 a month herbal remedies on the Internet claiming to “cure fibromyalgia.”

No, the inventor of this protocol was an endocrinologist who suffered from the disease himself. And, his treatment had a fiercely loyal following in the fibro community. I emailed some of his followers, who all passionately urged me to give this a try.

What a dedicated following! Almost a cult following. This has caught my interest…

"Yes! Yes!" encouraged Brain Yoda.

("Will you stop hitting me with that damned little cane?" responded Brain Mulder.)

I left the voices in my head to continue their arguments, and headed to the bookstore to buy a copy of "What Your Doctor Won't Tell You About Fibromyalgia."

As I read, hope continued to bubble up within my chest.

If this works, then…

No, don’t get your hopes up, Diana.

But, if it does, I’ll get my life back. I’ll be me again. It’s worth a try…

This approach made sense. Purge the fibro gunk from your system bit by bit. Not a miracle cure. Not an overnight fix. But, somewhere along the way, I would get better. (And, the science behind it made more sense than the cow thyroid extract that was next on my list of human guinea pig experiments...)

So I Bought My First Bottle of Guai

So, I purchased my first bottle of guaifenesen for $11 from an Internet supplier, and started following the protocol, just as it was described in the book.

The book cautioned that it wasn’t meant to replace a doctor, but supplement a doctor’s care. But, I’d done the doctor thing for so long, and it hadn’t worked. I wasn’t prepared to face a doctor with my research and notes again, only to be turned away…

Nope, I was doing this, with or without a doctor to back me up. I was doing it.

Welcome back, Diana.

And, that was the beginning of my new life. Or, more precisely, the return to the good life I'd led before chronic pain took over and I started talking to imaginary characters in my brain.

I started the guaifenesen protocol in July of 2004. In the past 15 months, my life has changed in more ways than I could have imagined.

I divide my life into "good" days, and "bad" days. But, there's a difference now. The "bad" days are "pain with a purpose," and that gives me hope. Yes, I hurt, but it’s because I’m purging fibrocrud from my system. This pain is a sign I’m actually getting better, and not steadily worse. What a difference in my ability to cope by holding on to that wonderful piece of knowledge!

My New Life

On my good days, I do things I haven't done in years. I work out at the gym now, and have been for 11 months now. The other day I did 60 minutes on the exercise bike. Today, I felt like hell, but I went to the gym anyway. My muscles screamed when I sat down on that exercise bike, but I kept at it for 50 minutes. I’d like to say I felt like a new women afterwards. I didn’t. But, I didn’t feel worse. I had slightly more energy, and I was able to make it through the rest of the day. It was enough.

I do weights at the gym now, too. Really low weights. The lowest settings the machines will go on in some cases. But, I do them. Lots of reps. And, I force myself to go the gym at least once a week, but sometimes twice, three times, even four times a week. I've put on muscle mass in my arms and legs. My husband tells me I look buff and sexy. And, I will admit my butt is much perkier than I've seen it in years.

And, on my good days, I have energy again. My husband and I hold hands as we walk our dog every night—and we walk at least a mile.

I teach my son's Sunday school class. I sing gospel with the choir, ring in a hand bell choir, and play guitar in a string/wind group. I organize monthly gatherings with my girlfriends with ludicrous themes. I've even taken groups of ladies from the church surfing with me in Santa Cruz, and now the men at the church want me to teach them to surf, too.

My son and I go off on adventures together on my good days. We hunt for sea shells in Santa Cruz. We go to the aquarium in Monterey. We dig in the sand box together.

“I Love You So Much, Mommy…”

Not a day goes by that my son doesn't wrap his little arms around my neck and say:

"Mommmy, I love you soooo much. Don't go anywhere Mommy."

This leads me to wonder if Brain Yoda is talking to him, too...

But, I’m so glad I’m here to hear his words, and that I’m here to watch him grow up.

Some days, I feel like a damned good Mom. It's the little things I appreciate the most, like how my son likes to sing his ABC's in the bathtub, or how much he likes watching geeky sci-fi shows with me on the weekends. (The other day he was so intent in learning what a "worm hole" was that I ended up grabbing a wrapping paper tube, and rolling rocks through it demonstrating the theoretical properties of a stable black hole in space.)

This afternoon, my son and I wrote a story together—a marvelous story about how he traveled in a space ship, with a space kitty, and visited a green planet where he ate green cupcakes with green aliens. We spent most of the afternoon drawing pictures for the book.

I realized I’d now become the Mom I’d imagined myself being all those years ago when I daydreamed about my future…

Welcome home brain!

Somewhere along this journey, my brain decided to rejoin my body. Welcome home brain. OK, I do have some incredibly foggy days still, which I know now are due to “fibro fog.” On these days, I end up taking the wrong road to get the grocery store, even though I’ve been there a hundred times… Or, I turn the stove on, and forget it’s on, or…

But, I also have good days, where my mind is clear, and I can write again. God, I love to write. It’s such an important part of me. Part of me died during those dark months when I couldn’t focus enough to write anymore…

Excellent Work, Diana. Can you take on another project for us?

I'm even working again-- freelance writing work. I have two clients, and they (gasp!) like my work. I like the intellectual challenge of working again. I feel like me again. I missed me. Sure, I end up working late into the night on my good days, to make up for all the lost hours of my bad days. But, I persevere and I get the work done. I feel like a good worker again.

The Future

Guai has given me a future. And, guai has given me hope. Without it, I can truthfully say I probably wouldn't be here writing this email right now.

Guai is not an easy road, but it is the only road for those of us with fibromyalgia. Sure beats that other road I was considering.

My future now is a bright place, shining with hope and possibility. I’m already even dreaming of grandchildren, and reading them stories, and writing them stories, and puppet shows…

# # #

OK, there is one disadvantage to taking the guai later in the day...

2005-09-17T21:06:00.000-07:00

OK, so as I wrote, I've been taking the guai later in the day so that I could have mornings free of cycling. I'm still at that stage where the guai makes me feel worse instead of better. So, if I have something that needs to get done in the morning, I wait until lunchtime to take the guai, so I can at least have a few productive hours a day. Once the cycling starts, it is soooo much harder to do even simple tasks, such as getting housework done, or focusing on a piece that needs to be written for a freelance client.

Ah, but there is one drawback.

Yesterday, I woke up and I was feeling pretty good. Clear headed. Joints not too stiff. After breakfast, I sat down to get some stories written for a client newsletter. I had some very productive time, which felt awesome. Lunchtime came and went, and I didn't want to stop because good bursts of creativity are still somewhat rare at this stage of cycling. So, I munched on some cheese and nuts at my desk and kept working.

Evening time came and I realized I hadn't taken any pills all day. A good sign to be sure. Had my head started pounding, I would have been reaching for some muscle relaxants, and Tylenol, and Ibuprofen, and Sudafed, and anything else that could help dull the pain.

Ah, but I never remembered to take the guaifenesen either.

Oh well, what's one little missed dose going to do?

Plenty, apparently.

Today, I felt dreadful from the moment I woke up. From the moment I opened my eyes, I knew it was going to be "one of those days." The muscles on the back of my head were clenched so tight, it hurt just to lie on the pillow. Like someone had clubbed me on the back of my head and it was one big bruise.

"Come on, Mommy! Get up!" My son said, tugging on me.

I struggled to comply, but all I could think was: "I'm still exhausted. I want to go back to bed."

I staggered down the hall to the shower. The bottoms of my feet hurt just to walk on them. Not a good sign.

I set the shower as hot as I could stand it, and did my best to stretch out the muscles in my back and neck. After much stretching, and using up almost all of our hot water, I finally was rewarded with a really loud 'CRACK!' out of my neck.

As the day went on, I was able to stretch my neck more and more, and get a couple more satisfying pops and clicks. (Yes, I know chiropractors hate it when you act as your own chiropractor and adjust yourself, but my back and neck need adjusting so often I have to either do it myself, or move in with a chiropractor. Since I'm rather happy with the husband I have, that means I've learned to do these adjustments on my own.)

I wore the stiff neck collar a neurosurgeon had given me two years ago. It takes the weight of my head off of my neck, and allows the muscles to relax.

I put a hot rice pack (some rice tied in a tube sock and heated up in the microwave) on the back of my head.

All of this helped, and along with a whole bunch of over-the-counter painkillers, the headache dulled to a manageable level.

I still felt dead exhausted, and didn't want to move my limbs at all. After trying unsuccessfully all morning to focus on work, I decided to go the gym.

"Well, exercise couldn't possibly make me feel any worse..." I reasoned. Plus, I'll admit my son's constant chatter was irritating my headache, and I thought some time playing with the other kids in the Kids' Club at the gym would do him some good.

I sat down on my favorite exercise bike and set it on the easiest setting.

Owwwww! My leg muscles screamed at being asked to move.

No! No! No! screamed my legs.

You will do this, ordered my mind.

I kept peddling, hoping the pain would diminish as time went on, rather than get worse.

It took about 12 minutes, but finally the pain began to ease. After 20 minutes, it didn't hurt to cycle anymore. After 30 minutes, I could feel the cloud of fatigue lifting. I stayed on the bike for 50 minutes, then did some light weights.

When I left the gym, I still felt like I was having a heavy cycling day, but I felt better, and that was enough.

Still not sure if this was just regular cycling crud causing the heavy symptoms, or the result of missing a guai dose. Either way, I'm glad the day is over and I hope tomorrow will be a better day.

Taking guai later in the day has been helpful.

2005-09-15T18:07:00.000-07:00

I must be cycling because within an hour or two of taking the guai I feel like total dog doo.

My brain turns to cotton candy, (known as "FibroFog.")

I have no energy, (the Chronic Fatigue Syndrome component of Fibromyalgia.)

And, I can't seem to get anything done, (which I guess is a natural result of being totally exhausted and not able to think.)

So, I've come up with a new strategy, and it seems to be working.

On mornings where I have to be functional, I wait until noontime to take the guai. (I checked this with the admins on the Guai Forum, and they said it was fine. As long as I'm getting two doses in over 24 hours, I'm doing OK.)

I've been doing this on Tuesday and Thursday mornings so that I can get Alex to preschool on time by 9 AM. As per my earlier posts this summer, I consider this a great test of Mommyhood to not be the last one to drop their kid off at school. It's just plain humiliating for your kid. And, to not be the last Mom to pick him up.

I didn't have this mastered last year when Alex went to the city run preschool, and while we were never terribly late, I was always getting him there at 9:03, or 9:05, instead of 9 AM. And, the classroom door was already closed, and we had to knock on the door, and the teacher's aid quietly opened it, gave us a patient smile, and ushered Alex inside.

I vowed to do better.

But, mornings are so tough with fibromyalgia. Everything is so stiffy and achey from a night of not moving around. It's hard enough just to get my body moving, much less motivate a toddler to finish his breakfast, use the potty, dress in school-worthy clothes, get into the car, get strapped into the carseat, and get to school. (Plus, there was never enough parking at the city-run preschool so we always had to park like a block away, which didn't help when we were running late anyway...)

So,this year, I vowed I would do better and not fail this test of Mommyhood.

So, I started setting my alarm two hours early to allow enough time to have fibromyalgia, and still get my son to school on time. Plus, I started waiting until noontime to even take the guai, so I could be clearheaded all morning long.

Thus far, he's had four days of school, (OK, three classes plus one open house,) and we've been on-time for all of them. Today, Alex was the first child to line up.

And, I've been on time to pick him up every day, too.

The kids have to wait in their classroom, each child sitting on their own little carpet mat, until their Mom signs them out, talks to the teacher, and then calls to their child. I don't want my child to be the only one sitting there on a carpet square, wondering why every child had been picked up but him. (I did this once to Alex last year, and he looked like he was going to cry. I vowed I would not do this to him again.)

Such a small thing in the scheme of the world, but it's a huge victory for me over fibromyalgia.

And, as Alex and I were leaving, I saw a late arriving Mom charging up the church driveway in her SUV, with this totally anxious look on her face, that screamed: "Out of my way! I'm late to pick up kid! Out of my way!!!!" I'm sure she was desperate to not be the last Mom to pick up her kid, and that she was picturing that look on her kids' face, sitting all alone in empty classroom on their little carpet square.

Aall I could think was: "Wow, that used to be me. And, look at us now. We're already in the car and on our way back down the driveway."

It's tough taking a medicine that actually makes you feel worse sometimes instead of better, but it is all part of the process of getting better on the guai protocol.

And, what choice do I have? This is the only treatment that works for fibromyalgia. My one and only possibility for reversing the disease. And, I am getting better, slowly, but oh, so very surely.

I took the guai at noontime today, and by 1:30 PM, I was so exhausted I had to lay down for a few minutes. I let Alex watch a Thomas video, hoping he'd fall asleep, too, but he didn't. But, he did let me rest until the video was over, and that was enough. I was able to regain enough strength to make it through the rest of the afternoon.

One day at a time I am making it through and beating fibromyalgia.

Count today as another guai success story.

I smell bad, (and that's good.)

2005-09-14T22:53:00.000-07:00

Well, there were a couple of posts on the Guai Group forum about smelling bad. And, that's actually a good thing. Stinky sweat and stinky pee are a good sign that your body is cycling out all the evil fibro crud out of your system. So, I wrote this note in response to someone who posted a note concerned about stinking:

From:         Diana Wolf Torres 
Subject:      Re: stinky pee

Well, I'd say "Congratulations on the stinky pee! You're clearing girl!"

I do notice there are times when I just plain stink.

And, all I can think is: "I smell bad.  And that's good!"

I do wonder if other folks can smell it, but no one has said anything so
far, and my husband is pretty open about bringing up smells.  (Hence, I have
learned to always blame my IBS flatulence on the dog.  I think the dog is
starting to think his name is: "Iwwwwww!")

I do try to shower twice a day when I'm stinking (cycling.)  I use these
showers as a good opportunity to do my stretches, so not only do I smell
better, I feel better, too!

Here's to us-- the stinking roses of the guai protocol!

(I live in Gilroy, the self-proclaimed "Garlic Capitol of the World."
Garlic is known as 'the Stinking Rose.'  So, there is a women's group here
in town that proudly calls themselves "The Stinking Roses" and holds
socials.  Perhaps I should join in.  With my guai-tinged body odors, I'd be
a sure hit!  Perhaps they would even elect me: "Queen Stinking Rose.")

Cheers,
Diana

Age 36.  Gilroy, CA.  Been proudly stinking on guai since July of '04.

--------------------------------------------------

Thoughts on salicylates

2005-08-30T22:56:00.000-07:00

Well, anyone doing the guiafenesen protocol has to be aware of "salicylates" and the hidden dangers they pose. Salicylates are plant products, and using them on your skin or in medications will block guaifenesen. So, you have to choose between your favorite personal care products and doing the guaifenesen protocol.

I was amazed when I learned from Dr. Amand that he had multiple patients, all suffering terribly from fibromyalgia, who refused to try the protocol after finding out they had to give up certain makeup products! Imagine choosing a make-up product over getting rid of the myriad of irritating, and sometimes disabling and dehabilitating, symptoms of fibromyalgia!

Since I don't wear make-up on a daily basis, giving up make-up was no big deal. Sure, I could make the effort and go out and purchase sal-free make-up products, but I haven't bothered. I have good skin, so I just go out and face the world with the face God gave me. (My Dad used to call makeup "war paint" and we'd have a good time poking fun at people who totally overdid it on the makeup front.)

But there were other products I had to check for sals, including my:
- soap (including the handsoap in all bathrooms of the house)
- deodorant
- shampoo
- conditioner
-razor (Does it contain an aloe strip? Aloe is a plant...)
- hairspray
- lotion
- suntan lotion
- toothpaste
- mouthwash
- perfume

So, I printed out the list of known sal-free products from the guaigroup.org website and went shopping at RiteAid. It did take me a while to find all the products I needed, especially with a squirmy and inpatient toddler in tow. But, once I found a particular set of products, I just stuck with it-- meaning, I always buy the same exact deodorant, shampoo, soap, etc.

And, each time I do, I quickly scan the packaging to make sure it doesn't say: 'New Formula!' or some such thing, and I also quickly double-check the ingredients to see if anything new has been added. But, this is now like a 10-second process now that I've memorized the key words I need to watch out for, (I list those key words at the end of this blog.)

Some lady on the guai support group said: "You may even find you like your new sal-free products better than those you were using before!" (The ones we were all so reluctant to give up...)

And damn, if she wasn't totally right.

Let me bore you with my hair/knotting/JoJoba/knotting story...

For years and years, (OK, ever since I got my first job and could start buying my own shampoos and stuff,) I've been buying all manner of lovely shampoos with exotic sounding plant things in them. Mysterious things like "JoJoba" and "tropical plant extracts" with smells so delicious you'd think you were washing your hair with a bouquet of flowers.

All these lovely shampoos had to go. I packed them up, along with all my exotic soaps and lotions and perfumes and such, and after asking around, finally found someone who wanted them, (Alex's old nanny, who was always appreciative of hand-me-downs in any shape or form. I gave her clothes, books, furniture, and now, lovely (plant containing) beauty products.

I selected one widely available shampoo and conditioner line from the sal-free list: Pantene. Never tried it before. The packaging was rather plain white and generic, and it didn't contain any of those deliciously exotic tropical plant ingredients. How could it be any good if it didn't contain exotic things that I couldn't pronounce?

But my hair had to be washed, and the JoJoba stuff was now all given away, so Pantene it was.

And, the most amazing thing happened. Within a few days, this sal-free shampoo solved a hair problem that had plagued me for years--- I'd been unable to brush my hair when it was wet. The hair just broke, tangled and got hopelessly twisted around the hairbrush or comb. Since I have very long and thick hair, this meant I had to either completely blowdry my hair before I could brush it, (a process that easily took about 25 minutes, and I am not a patient person.) or shower at night, let my hair dry overnight (and sometimes it was STILL damp by morning.)
On days when I had to shower during the day (like after surfing, to get the salt water out,) I ended up just wearing a baseball cap all day to cover up my unbrushed hair while it slowly (oh, so slowly!) finally dried out enough to brush it. My photo albums are filled with pictures of me wearing a backwards baseball cap over a big pile of fluffy, curly (and thereby unbrushed) blond hair. When fully brushed out, my hair is absolutely and compeltely straight. Not a curl in sight.

So, a few days after switching over to the sal-free shampoo, I noticed my hair feels different. Softer somehow. I run my fingers through it, and then notice something amazing, the hair doesn't tangle around my fingertips. It doesn't tangle at all. I grab my hairbrush. And, to my amazement, I run my brush through it from top to bottom without a single, hopeless entanglement!

So tonight I'm reading a review of another book by Dr. St. Amand on Amazon.com, and this one woman's posting just totally makes my teeth grate. Here's just part of what she wrote, (I'll rant about the rest in another day's blog.) She said:

>>I have read the first book by this author, and while I found his treatment protocol interesting, I did not find it very practical to implement. It is very difficult, if not impossible, to delete every source of salicylate from every product that you use. Every makeup item, every skin care product, every shampoo, conditioner, soap, deodorant, dish soap, detergent, cleaning product...the list goes on and on. There are plant extracts in nearly everything that we use on a daily basis.

If you do not work, perhaps you have the time to begin this intensive program. If you work full time, however, you are already exhausted from the fibro and simply do not have enough time left in your day to research every personal item that you use to see whether it contains salicylates.

I'm just picturing this lady ending up in a wheelchair by the time she hits her 50's because she's following the conventional treatments for fibromyalgia, (anti-depressants and painkillers.) These "treatments" do not actually treat fibromyalgia. They (partially) aleviate some of the symptoms. That's all. The disease keeps progressing and getting worse, year after year. So, these folks go back to their doctors and complain of their worsening symptoms. The doctors prescribe more and higher doses of drugs. Soon, the person is completely drugged out of their mind, and still feeling lousy. That's where I was before the guai protocol. The guai protocol is not a picnic, to be sure. But, what's the alternative? There is none. It's either do the guai protocol and get better in a couple of years, or just keep getting worse and worse. Every year having more and more of your health and happiness slide away from you...

The review got me so burned up that I wrote a counter-review. (There was more stuff that she said that I vehemently disagreed with. Once my review is approved and posted by Amazon, I'll link to it here from my blog.)

In the meantime, for anyone wanting to know more about sals, here are two very useful tidbits on sals posted by Claudia Marek, who is Dr. Amand's assistant, and also the author of an excellent book chronicling her own experiences with the disease:

Short Explanation of Salicylates:

Salicylates block the uricosuric effect of medications, this is well documented. They cannot be used with the medications that cause the kidney to excrete more uric acid because they park in the renal tubule area and allow nothing else to pass.

Salicylates you eat as food are glycinated and of course also destroyed in the digestive tract. Thus they do not make it to the kidneys and cause the problem. Topically applied they go directly into the bloodstream, in medicinal strengths they overwhelm the liver's capacity to handle them.

Salicylate exposure is cummulative. You get some from food --small amount--and some from food colors and dyes. Preservatives are often salicylates as well. Thus at a certain point guai is blocked, at a lower concentration it is slowed down. We thus ask people to avoid as much as possible. Clearly a small amount in a single product might not be a problem but it is easier not to bargain and try to calculate a number that is different for each person. So we just ask patients to avoid the concentrated forms: oils, gels, extracts from plants and the chemical itself. Toothpaste with mint oil, which is methyl salicylate is a problem. Mint is salicylate, the same chemical. The oil, in the dentifrices is absorbed topcially quickly just as are sublingual medications.

Guaifenesin acts upon the mucus producing cells to thin the secretions. Thus, for that action it is not dependent on occupying receptors in the kidneys. Guai works for that purpose when salicylates are taken for that reason.

Claudia Marek

And, here's another great tidbit from Claudia, detailing how to identify sals. With just a little effort, it is very easy to identify these products. I wrote down a summary of this on my notecard which I carry in my purse, and I have yet to buy a product that I can't use. It's not a "full-time job" to figure this out like the reviewer woman above claims. It's an extra five minutes when purchasing. And, if you're like me and stock up when you find a good deal on sal-free products (like the sal-free Pantene shampoo knockoff at the Dollar Store. I bought like 20 of 'em.), then it's even easier.

Identifying Sals on Product Labels

There are only a few words you need to look for on labels. You need to learn them, or write them down and carry them with you. They are:

Look for OILS, GELS or EXTRACTS containing a plant name. You can't use them on your skin or as medications.

Look for SALICYLATE, SALICYLIC ACID. You CAN'T use them, or and chemicals with SAL in them. You can't use them on your skin or in medications.

In Sunscreens you can't use octiSALate, or homoSALate. or the new one MERADIMATE.

Look for MINT, MENTHOL, MENTHYL. If a chemical has MEN in it you can't use it on your skin or in medications. "On your skin" also means the skin inside your mouth. NO MINT FLAVOR -. No mint flavor in anything.

You can't use bark extracts like CAMPHOR, BALSAM, PYGNOGENOL, BISABOL.

You cannot use BIOFLAVINOIDS in vitamins or any supplement.

This is extra credit.
You don't need to know it but if you do, you'll have more products to use:
There are some salicylate-free plant PARTS. CROWS is an easy way to remember these salicylate-free plant parts: these seeds or grains do not contain salicylates - Corn, Rice, Rye, Oats, Wheat, Soy. (The other parts of the plants DO contain salicylates, but the seeds or grains do not.)

You need to avoid all oils, gels and extracts with a plant name EXCEPT if the name is Corn, Rice, Rye, Oats, Wheat, or Soy.

Claudia Marek
-------------

Well, that's it for tonight.

May your days be sal-free.

May your nights be restful.

May your mornings not be overly stiff.

And, may your guai cycles be short, relatively mild and filled with marvelous good days in-between where you feel like a whole person again!

# # #

- Diana

The Gilroy Garlic Festival- Mind over fibromyalgia....

2005-07-29T22:18:00.000-07:00

My goal today was to take my son to the Gilroy Garlic Festival. We live just about a mile from the festival, and the festival is a really big deal here in the town of Gilroy. Matter of fact, if you tell folks you live in Gilroy, they usually say: "Oh yes! The Garlic Festival!" It's what the town is known for.

Alex and I arrived home from the airport on Wednesday from our trip to New York, and the whole town smelled of roasting garlic. They roast over two tons of garlic for the festival, and it attracts over 125,000 visitors to our little town of 40,000! (Ok, that might not seem like a little town like some folks, but compared to San Jose, a city of a million where we lived before, it seems nice and small to me.)

Friday is supposed to be the least crowded day to attend the festival. Saturday is absolutely insane. We can't even leave our street as there are so many cars passing by all day long. Sunday is better than Saturday, but not as good as Friday.

So, today is Friday, and my goal was to take my son to the Garlic Festival.

My body didn't seem to have gotten the memo, though. From the moment I awoke, my head was pounding and my leg muscles were so sore and achey I had to take the stairs one at a time, and rest halfway down before continuing. I thought perhaps breakfast would help. Maybe my head just hurt so much because my blood sugar was low. So, I make breakfast for my son and myself, and ate it, but felt just as lousy afterwards. My head was throbbing so painfully that I had to sit down.

I felt tears of frustration come to my eyes. I wanted to have a fun day with my son. I didn't want to spend it nursing a body riddled with a whole bunch of stupid fibromyalgia symptoms. I was angry at my body, feeling betrayed by it. Angry at it for having such a meddlesome disease.

I decided to fight back with everything I had. I started with taking painkillers, whatever I had in the medicine cabinet. I didn't have anything particularly strong, as I voluntarily gave up all my prescription painkillers when I started the Guaifenesen Protocol. But, I did what I could combining Tylenol, ibuprofen and naproxyn sodium. I also took both types of prescription muscle relaxants that I have. Taking both at once would make me drowsy, but it also just might help unlock the muscle spasms that were squeezing my neck and head so painfully. In case that didn't work, I heated up a rice pack, wetting it down so that I'd have moist heat, and placed this on the back of my neck. My son wanted me to read to him, so I carefully balanced the rice pack between my neck and the chair, and read books with him. After about thirty minutes, I was drowsy but I could feel the locked up muscles releasing a little. I slowly climbed upstairs, wishing in that moment that we had a one-story house. I took a long, hot shower, stretching and stretching every muscle I could. I was rewarded with some loud cracks and pops from my neck, and the muscles eased up some more.

By the time a girlfriend of mine called at 11 AM, I felt almost human again. I didn't feel great. I didn't even feel good. But, I felt like I could function, and that was enough.

"Hey, I'm going to Garlic Festival!" said my buddy Amy, "want to meet me there?"

"I'm going, too," I told her, "I'll meet you there."

I felt a certain triumph over my body, knowing that I was going to make it to the festival anyway, despite all the symptoms my body slammed me with. It's my life, damnit, and I refuse to let this stupid disease take it over and dictate my life.

Knowing it would be fool-hardy to try to take a car anywhere near the Festival, (there's plenty of parking but you have to park so far away that there's a shuttle bus.) So, I pumped up the air in my bike tires, and the trailer that carries my son, and off we went to the festival. There's a hiking/biking trail along the levy that leads right to the festival. I parked my bike right outside the main entrance gates, and was there in about 12 minutes door-to-door. It was a wonderfully convenient way to get there. It took my friend about 40 minutes to meet up with me.

"I had to park like a mile away!" she said, "It took me all this time just to get here from the parking lot! "

I felt even better about my decision to ride there rather than drive, and also a certain bit of triumph that I made my muscles cooperate with me today, and transport me there.

We ended up having a good day at the Festival. It was surpisingly crowded. I had thought that pretty much only the local folks would go on Friday, as everyone else would be working, or at the big Grand Prix race in San Jose. But, surprise, surprise. Tons of folks went there on Friday. I am amazed how popular the Festival is!

My son lived the Kids Area, which had tons of rides, games and activities for the little ones. I bought him the "Super Family Pack" full of tickets, and let him just have a field day enjoying the rides. Seeing his happy grin made it all worthwhile. My head was still hurting, so I can't say I was actually having a lot of fun, but I did feel good that I'd made it there, and that my son was having such fun. Maybe next year, one more year into the Guaifenesen Protocol, I'll actually feel good and can thoroughly enjoy all the Festival has to offer. At least I made it.

And, even if I didn't feel particularly well, I seemed to be lucky today.

Last year, I'd won a hermit crab at the Garlic Festival, and the hermit crab is still alive and doing well. My son named him "Hermie." So, I decided that it was time to win Hermie a friend. I won a crab on my first try, and ended up winning the grand prize. (You had to throw ping pong bowls into little fish bowls, and I got mine in the highest fish bowl.) So, I won a hermit crab and a free cage. I was most pleased. My son was thrilled, and named this hermit crab "Junior."

A funny thing happened to poor Junior at the Festival, that almost resulted in his demise...

Alex was happily walking around the festival, carrying his new hermit crab in its little cage. We sat down on the grass, to watch some of the entertainment, (there are bands playing on something like six stages!), and to eat some garlic-themed lunch.

After Alex finished eating, he took his hermit crab out of the cage, and decided to let it crawl around in the grass,

(unbeknowst to me.) Suddenly Alex says: "Mommy, where'd Junior go?" Sure enough, the crab had crawled away. Now, mind you, there are hundreds of people walking by us, and this crab is about the size of a quarter. I crawled around on my hands and knees a bit, looking for the crab. (Yes, I got funny looks from people walking by.) People sitting near us asked what I was looking for, and when I explained, they crawled around too, looking for the crab. Well, we couldn't find him. I thought: "Well, that's it. He must have been stepped on and crushed under someone's shoe." So, I thanked the people who had helped us look, and prepared to leave. I imagined the poor crab crushed into tiny pieces under thousands of pairs of feet walking around at the festival, or even worse, stuck to the bottom of someone's shoe... Poor little crab. And, we'd both been so happy to have won him, and to be bringing him home to meet Hermie.

Just as we were walking away, something caught my eye. And, there he was, just crawling around, happy as could be. I picked him up, and checked him over carefully. Amazingly, he was still completely intact and unharmed. Somehow he managed to avoid all those many hundreds of feet stamping all around him! This was definitely a good omen!

Alex wanted to play more games, so we headed back to the Kids Area. He tried his luck at a basketball game, but even with my holding him up, he's still so little, all his shots fell short. On the last shot, he said: "Mommy, you try." I was holding him in one arm, so I was a bit off-balance, and didn't think I had much of a chance to make it in. Whoooosh! My shot went right in.

"Hooooray Mommy! You did it! You did it!" Alex said happily, hugging me. I felt like his hero. It was wonderful. He selected a giant inflatable baseball bat, so now I was carrying my three-year old, a hermit crab cage, and a four foot long inflatable bat. I decided to steer my son away from the games, and we went to check out the Arts and Crafts booths on the other side of the festival.

There was no shade on the other side of the festival, and it was so blisteringly hot that we all quickly became irritable and tired. I suggested to Alex we should head home.

"No, Mommy! Please! A few more minutes!" he begged, "I'll be good!"

"It's not that, Alex," I told him, "Mommy's very hot and tired and we still have to ride home."

"Please Mommy! A few more minutes!"

I realized he was really enjoying the festival, and for his sake, yes, we could stay a little longer.

So, we headed back over to the kids area, and went to the Home Depot Kids Booth. They had free kids crafts, and my son happily potted a plant.

So, now I was carrying a three-year old, a hermit crab cage, an inflatable bat, AND a potted plant. I let my son go on a few more rides, and then he cuddled up against me and said: "I'm tired!"

"Me, too, son," I said, and we headed for the exit.

It was a very hot ride home, with one big hill in the beginning. My son sat happily in the bike trailer, cradling all his new treasures. When we arrived home, I was so tired and hot that I felt dizzy and weak. I realized that I better lay down before I fell down.

My son got a second-wind, and wanted me to play with him, but I told him it was rest time, and that was final. We put a movie on, and after about two hours of resting, I felt like I could move again.

I took a shower, gave my son a bath and made dinner. I was still very tired, and my headache was bsck full-force, but I'd done it. I'd taken my son to the festival, fibromyalgia or not.

This disease is not going to rule my life. It's not.

And, the longer I stay with the Guaifenesen Protocol, the better I will get.

OK, I'm getting dizzy again-- a good sign I should call it a night.

Whoa! Now, these are some odd symptoms, but I suppose it's all part of getting better.

2005-07-07T22:05:00.000-07:00

Whoa-- something strange is going on in my female parts today. The last time I felt cramping like this I was in labor with my son. The only difference is at the end of those intense cramps, I had a baby boy.

These cramps don't seem to have a purpose.

Or, do they?

These are definitely not menstrual cramps. Just finished up my period last week. So, I'm thinking this must be more cycling. I mean, there must be tons of muscles in the uterine wall. If there are muscles there, then they must have fibro crud in them, too. And, if they have fibro crud in them, they'll have cycle as well before I'll be free of the disease.

I'll have to post a note to the Guai Group support group, and ask if this is a normal part of cycling.

In the meantime, I'm just walking around my house doubled-over like someone just punched me in the stomach.

I was punched in the stomach once. Not an experience I care to repeat. I was in elementary school, and the bus had arrived at my stop. I was just getting up to get off the bus when another child rushed up to me and punched me in the stomach as hard as they could. There was no provocation for the attack. I can only assume someone had dared them to do it. I was in the gifted program at school, and always got excellent grades. I wore glasses, and was already getting acne. I was a natural target. The perfect nerd.

I staggered off the bus, while I heard all the kids laughing behind me. The bus driver looked at me strangely but did nothing. Either he didn't see the attack, or chose not to interfere.

All the wind had been knocked out of me, and I couldn't breathe any air in or out. I simply couldn't breathe at all. I sank down onto the curb at the side of the street, as the bus pulled away. Kids stared at me out of the window, some of them leering.

As the seconds ticked by, and I couldn't get any air into my lungs, I began to panic. I thought I was going to die right there, and my Mom would find my body there on the side of the road, and never know what happened to me. I was very sad.

Then, I was able to suck in a tiny breath. Not enough, as I was starting to get light-headed from not breathing, but it was something. And, then I was able to breathe in a little more. And, then some more. I felt my strength returning and the pain in my stomach began to fade.

I gathered up my backpack and walked slowly home, wondering if these punches were now going to become a daily occurence.

But, they didn't. I haven't been punched by anyone since.

Hmmmm... memories. I wonder if my son is going to do well in school, too. And, if one day someone is going to punch him for being smart.

Wow-- that was fast. I posted a note to the Guai Group just a few minutes ago, and already got a response back.

Here's the note I just got back: "Diana if your pain is jumping from part to part you are cycling. If a pain comes and stays and does not change you need to get it checked. If these new
pains don't change don't assume it is FMS cycling."

That reminds me of something my local rheumatologist said to me last year. I was telling her about pains I have in my ankle and foot-- the same foot I broke last September. I told her I hadn't gone back to the orthopedist, because I was thinking the pains were just "some stupid fibro pain, and would eventually clear on its own."

She told me: "Don't make the mistake of blaming everything on fibro. You still need to listen to your body."

She recommended an orthopedist to me, but I never went. I will someday. I guess I'm still hoping the stupid thing will heal on its own if I give it enough time. But, the story of my silly broken foot is a story for another day.

Oh wow-- another email just popped in my box from the Guai Board. Gotta' love that group!

This note reads: "FMS affects every organ system in our body except maybe the liver." (FMS is a common abbreviation for "Fibromyalgia Symptom.")

Interesting. So, I can expect pain just about anywhere and everywhere in my body, except my liver. Well, liver, enjoy the party. You're the only part of me that gets a "Get Out of Pain Free" card.

And, another note! My fellow group members are just wonderfully responsive! This one reads: "You have thoroughly described a cycle. Yes, it moves around and to different parts, especially at first. When you've cycled out several areas, it dogs you to death in one area or maybe a couple areas. That's what's happening to me. Drives me nuts! Yes, it's a good sign that you're cycling!"

Speaking of cycling, I really should drag my butt over to the gym and work out. I just totally didn't have the energy for it this week. My rheumatologist told me I should go anyway, as it will make me get better faster. I know she's right. I will go. Just not today.

# # #

Well, I got my son to school on time, (just barely, there.) Mornings are tough with fibromyalgia.

2005-07-06T22:25:00.000-07:00

OK, as I mentioned yesterday, I am totally determined to get my son to pre-school on time. I feel like this is some big Mommy life test-- can I get this whole routine down of getting myself and a 3-year old going in the morning, remember everything he needs for school, and then get him there on time. I suppose this would all be much easier without fibromyalgia and how crummy it makes you feel first thing in the morning, but fibro or no fibro, my son needs to be at preschool at 9 AM. And, I will get him there. I will.

Today, we just made it as they were ringing the bell for kids to go into the classroom. It was cutting it a bit close, but he made it on time. (Whew.)

I got up on time, (sort of), even though I was definitely having a "fibro day," but I took me longer to load up the car as I had these computer monitors to load in the car.

I've been having a very productive two weeks selling stuff on eBay. I've sold like 7 or 8 items, and made almost $500. The three biggest ticket items were a handheld Jornada computer which went for like $150, and the next two big ticket items were these 15" LCD Flat Panel Display computer monitors that went for $105, and $95 respectively. This was all just surplus computer equipment we had lying around, so it was time to find new homes for them, and eBay was just the place to do it. So, I wrote up very attractive ads, complete with every detail and technical specification you could ask for, and got lots of bids on each item, (in the range of 12-20 bids for each item, which is excellent.)

OK, so everything is going peachy and I'm all proud of myself, but now I have to SHIP the stuff.

The handheld computer is pretty small, and I have all the original packaging, so I get that one shipped off with no problems.

But, the computer monitors? They are these lovely flat panel displays, with some very breakable and delicate parts, and now I have to ship these things to the buyers-- which, of course, are wayyyy on the other side of the country.

So, I think: "OK, I'll bring these things to UPS and have them pack them up for me real nicely."

These were Gateway monitors, which use proprietary plugs and cabling. I wasn't sure if folks needed the special video cards that had come with the monitors, so to be on the safe side, I offered up the video cards as a free bonus with the monitors. OK, but this also meant that if I needed anything off those Gateway computers that I had to get that data off before I pulled the video cards out, as once the machines no longer had video cards, I would have no way to communicate with them. (OK, unless there was another video card built into the motherboard, but I wasn't sure if they did and was too lazy to try to figure this out.)

So, now I realize I've got to back up all the data off these machines, and re-format the hard drives (wipe them clean), before I can pull these cards out. (One of my future projects being to sell the computers, too...)

What I think will be a one-hour project takes like four hours, but finally I get all the data backed up and the video cards pulled out, and all the documentation and cabling gathered together that goes with these monitors. So, I head off to the UPS Shipping Place. They close at 6 PM, and it's now like 5:46 PM. My neighbor comes over to chat with me just as I'm out the door, and I said: "I'd love to chat, but I gotta' make UPS. Want to come?"

She says: "Sure!" and offers to give me a hand schlepping all the stuff, plus my three-year old, out to the car.

So, we speed off to the UPS Store, and when we arrive in the parking lot, I discover my son has fallen sound asleep. My neighbor offers to stay in the car with her. I thank her again, thinking it was very clever of me to ask her along on this little trip, and quickly run into the store, schlepping these monitors and manuals and cables and video cards with me.

The lady behind the counter glares at me, because it's now like two minutes to closing time, but hey, they're still open, so she's got to help me, right?

Well, she does, but when she quotes me a rate for packing these monitors up, I realize she must totally be pissed at me or something. She wants $50 for each monitor, just to pack them up. I say: "Excuse me? Could you please tell me how that $50 breaks down?"

She tells me that it would be best to double-box the monitors, and that the first box is $36, and the second box is $14. The package will weigh about 30 pounds, and she's about to calculate shipping rates, when I say: "30 pounds? But, the monitors only weigh 12.5 pounds each!"

She says: "We're going to put a lot of packing peanuts in there."

I say: "18 pounds of packing peanuts?!!!!" (I'm thinking that with how light packing peanuts are that this would be enough packing peanuts to fill up the Queen Mary.)

I tell her, "Thank you, but I think I'll pack and ship these myself."

So, I schlep all my stuff out of there, and she locks the door behind me, and I sheepishly head back to my car, and my sleeping son, and my neighbor, and explain that I'm not shipping anything today after all.

After I make dinner for my hubby and son, I head over to OfficeMax and buy up packing supplies. I find some very sturdy shipping boxes for $3.99 each.

I keep thinking how the UPS lady wanted to charge me like $36 for a single box, and that the drugs must be very good on whatever planet she hails from...

I then buy a huge thing of bubble wrap, thinking that if I'm going to be auctioning off a lot of stuff on eBay, that bubble wrap is a wondrous thing, and it is cheaper to buy the big roll. I then buy this huge box of packing peanuts. The box is like three feet tall, and my toddler son is able to carry the box himself all the way to the front of the store. And, now I'm once again trying to envision what 18 pounds of packing peanuts would look like, and I'm once again thinking unkind thoughts toward the UPS Lady.

So, I get home,and start packing these things up. My husband, who has a degree in Industrial Engineering, takes interest in the project and graciously offers to help pack things up. Figuring his Engineering degree totally wins out over my English/Communications degrees for this type of work, I gladly hand over my super-jumbo roll of packing tape. (Bigger is better.) :)

It takes about 25 minutes, but by the time we're done, (OK, I say "we" but this consisted of my husband doing the work and me telling him what a fine job he is doing,) we have two extremely well-packed boxes.

So, now we fast-forward again to the next morning, and I need to get my son to nursery school on time. I'm thinking: "OK, I have a 10 AM teleconference with my freelance client, and Alex has to be at school by 9 AM. I'll have just enough time to mail this stuff off at the post office, even if there is a long line, and it will be much easier to schlep these two huge boxes into the post office with a wiggly three-year old in tow..." So, I'm loading this stuff into the car, while also trying to convince my little one to please get into his car seat, as it's now time to leave for school.

It's now 8:51 and we have just enough time to make it to his school. We're at the end of our street when I remember we have forgotten his little arts and crafts basket that the kids are supposed to bring everyday. I remember how upset another child was the day before when his Mom forgot his basket, so not wanting to be the Bad Mommy of the Day, I quickly whip my minivan around and speed home to get his little basket. I dash out of my car, car door still open and engine running, grab his basket, and charge back to my car. I slam the car into reverse, buckling my seatbelt as we go, and check the clock. 8:53 AM. OK, we can just make it if we hit the lights just right.

We pull up in front of the church (also where his school is) at 8:59 AM. My son wants to play with toys that are in the car, and pick up every old Cheerio off the floor.

"We have to go NOW! You can play with those later. MOVE IT, MISTER!" I grab him out of his carseat, close the door, then realize I've forgotten that damn basket again. I open the door, grab the basket, and dash for his school.

The bell is just ringing and the kids are just lining up as we take the shortcut through the alleyway and past the dumpster and emerge right at the head of the line of kids.

I smile politely at the other Moms, who are looking at me quizzically like: "Where'd you come from?" and I'm thinking: "I'm on the Church Council, and I know every shortcut at this church, so I have a huge edge over you non-church going Mommies..."

And, my son gets into the lineup just on time.

I breathe a huge sigh of relief, wave good bye to my son, and then take a deep breath and prepare for my trip to the post office. As I'm walking out, (I go the normal route this way, and not through the dumpster shortcut,) I notice there's a "Sign In" sheet for parents. Other Mommies are writing their names down, and the time they dropped off their child. There are a couple of times of cheerfully scrawled Mom signatures on there with times like "8:45 AM."

8:45 AM? Oh man, I was still trying to get my son to pee before leaving the house at 8:45 AM. They were already here at the school at 8:45 AM? I sign next to my son's name and put "8:58 AM," thinking that when my tires first touched down on church-owned pavement, it must have been 8:58 AM, even if we didn't actually emerge from our car until that bell had already rung...

I make a mental note that tomorrow my son will get there early. Darned early. And, I will have a much more respectable time to put next to my name.

And, I wonder why this is suddenly so important to me, but I guess this has now become another one of these "Me Versus My Fibromyalgia" battles, and another one that I am determined to win. No matter how crummy I feel in the mornings, I will get my son to school on time. I must. I owe it to him.

Squaring my shoulders with determination, I head back to my minivan, and drive to the post office. The boxes are big and awkward, (but not overly heavy), so I decide to balance them in my son's stroller and use it as a sort of hauling wagon to get these packages into the post office. I get some funny looks from people, probably wonder if there's actually a baby or something under these huge, totally-overtaped boxes, but I just smile back and inch up along the line with everyone else until it's my turn.

I plunk my huge boxes on the counter, smile at the mail lady and say: "eBay."

She smiles back knowingly and begins to weigh them. 16 pounds, with all the manuals and plugs and cables and video cards and packing materials. And, we used up that whole huge box of packing peanuts between those two boxes. And, it still only weighed 16 pounds.

I am once again thinking very unkind thoughts toward that UPS Lady.

I pay her, thank her, and head on home, trying to gather my thoughts for my 10 AM conference call.

Now that my adrenaline rush has worn off, I realize I'm tired, achey and my brain isn't functioning too well. I can't remember who it is I'm actually supposed to be interviewing at 10 AM, but know i have it written down on my desk somewhere.

I arrive home at 9:50 AM, sit down at my computer desk with a deep breath, and realize I now have ten minutes to figure out who it is I'm supposed to be interviewing, what their phone number is (and do they prefer to be dialed directly or do they prefer I call their assistant and then be connected through), and then, of course, I have to come up with an intelligent set of interview questions.

I put on my noise cancelling headphones, and some Pink Floyd, and totally focus. I re-read my notes, (I'm very good about taking notes,) I get myself composed in time for the interview, and end up actually having a great conversation with my interview subject.

By the time I'm finished, it's time to pick my son up from preschool.

And, I was ten minutes early for picking him up.

Sometimes it's the little things in life that make you most proud. Here I just finished interviewing the COO of one of the hottest companies in Silicon Valley for an intriguing article on their company strategy, and what I'm really proud of is making it to my son's school on time to pick him up.

The beautiful smile on my son's face made it all so very worthwhile...

A few Mommy tears

2005-07-05T21:17:00.000-07:00

Well, my fibromyalgia pain returned today. But, I can't complain. I had a whole day free from pain yesterday and it was truly glorious.

I set my alarm for 7 AM so I'd have plenty of time to get myself and my son, Alex, ready for his "Summer Bunch" nursery school program, which starts today at 9 AM. July 5th is a lousy day to start a nursery school program, as guaranteed those little toddlers are going to be up much later than usual the night before. Our neighborhood sounded like a war zone until well after midnight, with fireworks going off like crazy.

But, the program started today, and it was supposed to be an excellent program, and I wanted my son to go.

This past fall, my son went to a city-run nursery school and I had the toughest time getting him there on time. The program started at 9 AM, and I'd usually get him there at 9:03, or 9:05, but never quite at 9 AM. I mean, it was just pre-school, so it wasn't the end of the world that we were a few minutes late, but still. I wanted to get this right. Once he starts kindergarten, it would be disruptive of me to deliver him to school late, and eventually he'll be old enough to notice he's late. And, in the higher grades, they penalize kids for late arrivals, so I really felt like I had to get this right, or be something of a failure as a parent.

The problem is mornings are such a tough time for someone with fibromyalgia. My husband wakes up and just gets right up out of bed. He can easily get up at 5 or 6 AM, and not think a thing of it. I wish that was me.

I'm always so reluctant to get out of bed, because usually when I first wake up the first thing I notice is how much my head hurts. And how tired my body still feels. And, I know getting up is just plain going to hurt. And, somehow, that just doesn't make me want to hop up out of bed.

I was tired this morning, as yesterday had been a full day, and I'd gotten to bed late, but I forced myself up, and immediately noticed all my fibro symptoms back full-force.

"Whatever. I'll deal with it," I thought, and shuffled down the hallway to the shower. After standing under a hot shower for 20 minutes, and doing some stretching, my muscles were moving a bit better. I walked down the stairs very slowly and carefully. You can always tell if I'm having a fibro day or not just by the way I do stairs. On my fibro mornings, I take those stairs so slowly and gingerly. On a good day, I can bound up and down those stairs like a totally normal person.

I made breakfast-- eggs for myself, eggs and oatmeal for my son and husband, and coffee for my hubby. I would love to have some oatmeal in the morning myself, but I'm trying to stick perfectly to the HG-Strict diet at the moment, and there's no starch at all on HG-Strict. Once I had all the breakfasts prepared, I went upstairs to wake up Alex. He was still very tired from his busy 4th of July day, and late night, and did not want to get up. I tried to get him dressed, but he just murmured: "No, Mommy. Sleep! You sleep, too. Lie here with me."

It did look so tempting to curl up with him and go back to sleep. But, I was determined to get him to his school on time. He could always take a nap after school. I called for my husband to help me get him dressed, and between the two of us we wrestled him into his clothes. He didn't want to eat, so I packed him a bag of Cheerios to go, and held him on my lap while I finished my eggs, and then we left for his school.

I got him there several minutes early, which I was immensely proud of. Maybe there's hope for me as a mother after all.

The teacher rang the bell, and instructed the kids to line up along one wall. All kids had been instructed to bring a basket, or a beach bucket, everyday to put their crafts in to take home. We didn't have an appropriately-sized sand bucket, so I gave him a nice sturdy basket we normally use to hold mail. He looked so cute, standing there with the other kids, clutching his basket.

The teacher greeted each one of the children, and then they followed their teacher up to the classroom. The classroom is situated up on a little hill above our church. It's a very popular preschool, with over 100 kids enrolled in the September to May school year. They offer a 3-year old and a 4-year old program, (divided up between morning and afternoon classes.) Now, mind you, I don't think there's more than 50 folks who even belong to our congregation at the church, so we definitely don't have over 100 toddlers from those 50 folks. The school is very popular with people in town, and you don't have to belong to the congregation to send your child to the preschool. The preschool is considered one of the best in town, and there is a long waiting list in order to get in.

Alex will be starting the three-year old program this September, and since he is enrolled for the Fall, he was eligible to attend the optional "Summer Bunch" program for the month of July. The "Summer Bunch" program consists of arts and crafts, singing songs and storytime. My son is very social and just adores being around other kids. And, I accepted a big freelance project for the month of July, so having Alex in the program offered me six free hours a week of "Mommy time" so I could get my freelance work done.

So, there went my little boy, confidently walking up to his little school on the hill, following his teacher, and clutching his woven straw basket. He stopped, and turned, waving at me: "Bye Mommy! Bye!"

He looked so confident, and so sure of himself, even though he'd never even set foot in the classroom before. (I missed the Orientation Day, as it was the same day I went to see "Les Miserables" in the city.)

Yet, there went my little one, so confident and sure of himself, even if he was operating on just 8 hours sleep, (which is plenty of sleep for an adult, but toddlers need a good 10 or 11 hours.)

I felt so many different emotions as I watched him turn his back and step into that classroom, disappearing from sight.

And, I totally teared up.

I blinked quickly, trying to hide my tears, because I was embarassed I was getting so emotional over something as minor as my son's first day at the new preschool. I quickly glanced over at the other Moms to see if anyone was looking at me strangely. But, then I noticed something really cool-- all the other Moms were teary-eyed, too.

On one hand, you want your child to do all these enriching activities, and learn to be independent and let go. On the other hand, you're ever so reluctant to actually let them go.

One of those great paradoxes of parenthood, I guess.

I turned around to walk over to the church office. Pastor Koch was outside his office, watching the kids file in for their first day of school. I kept blinking to get the rest of those tears gone. I like and respect Pastor Koch, but I was still embarassed by my tears.

I wonder why it is we adults are so afraid to show emotion? Why we feel we have to be so stoic? Is it just ingrained in as part of our culture? I know my Mom raised us kids to be pretty tough and self-reliant, and once we reached a certain age, tears were definitely discouraged. I thoroughly enjoy a good cry during a sad movie when I'm alone, at home, by myself, with no one to see my emotional outburst. I find it rather cathartic. But, I'm embarassed to cry in front of anyone, even my husband.

I greeted Pastor Koch with a cheery good morning, hoping he didn't think it was odd I was blinking so much. When he turned to walk into his office, I quickly swiped a hand over my eyes, to erase any further traces of my Mommy tears.

Pastor Koch and I spent the next hour talking over themes for the church's Summer Music Camp. I accepted a new position as Director of Education and Youth at the last Church Council meeting, and while the Summer Music Camp doesn't officially fall under those responsibilities, I volunteered my time anyway. Alex attended the camp last year, and enjoyed it, and I was planning on sending him again this year. So, since I'm going to be there anyway, I might as well make myself useful and help out with the running of the camp. Fortunately, the camp takes place after I finish my big freelance project, so I should have the time to devote to the camp. Hopefully, I will also have the energy. But, you never know with fibromyalgia. I could be slammed with crushing fatigue that week, and I'll just have to deal with it. As I've said before, I'm not going to stop living my life because I have fibromyalgia. I think the camp's a good program, and I will be there, pain or no pain, I'll be there.

And, how did I feel today-- after my big day yesterday of mopping floors, vaccuuming, laundry, playing badmitten and walking over to the high school for fireworks, (a walk of about 2 1/2 miles, round-trip.) Well, my body was sore and achey, typical fibro stuff. But, I've had worse days, and I'm still on a natural high from the pain-free day I had yesterday. And, if the protocol continues to work, I'll have more and more of those days to look forward to in the future.

It just makes me giddy to think about it-- day after day of feeling good and having a normal amoutn of energy. I could mop my kitchen floor any old time I wanted to. I could climb the stairs and not think twice of it. If I drop something on the floor, I could bend over and pick it up without fearing sharp pains in my back and legs. I'm going to be just like a normal person again.

Such great hope I have for the future!

Hurrah! A break from cycling! A Happy Fouth of July!

2005-07-04T23:26:00.000-07:00

Wow-- I had a great 4th of July.

God must have truly smiled on me this day, as I had a full day's reprieve from fibromyalgia pain, and the pain of cycling through with the guaifenesen protocol.

I woke up, and it didn't hurt to get out of bed. The bottoms of my feet didn't hurt when I walked to the bathroom. And, I was able to walk down the stairs like a normal person, rather than having to lumber stiffly down one at a time.

My husband, Jovani, was already up and busily working on the new fence he is building. Jovani is an amazing man. He loves to keep busy, so when he's not working his engineering job, he's either building something, or planning something to build. He's off of work all this week, so he decided to tear down our fence and build a better one. It's been so wonderful to watch him devote himself fully to the project, and get such satisfaction in seeing it turn out so well.

And, I was thrilled that my muscles didn't ache today, so I decide to celebrate by-- mopping the floor. Yes, I know wild party girl. But, you have to understand that I've put "Mop Kitchen Floor" on my To Do list everyday for the past two weeks. And, this was the first day I felt good enough to actually do it.

So, after I made breakfast for my hubby and son, I vaccuumed and swept the kitchen floor, and then mopped it not once, not twice, but three times. It felt so good to get the floor clean and shining again.

I still had energy left over after that, (hurrah!), so I decided to tackle the laundry. I felt a bit guilty that I wasn't taking my son to the annual 4th of July parade in Morgan Hill, but he was happily engaged following his Dad around on the woodworking project, and I had so much I wanted to get done around the house. I knew at any time that the crushing fatigue and pain could set in again, so I felt like I was racing against the clock to get as much done around the house before my body quit on me again.

So, I vaccuumed all the downstairs carpeting, sorted through the laundry, started the loads, and then headed outside to fertilize and water the garden.

Our favorite neighbors were hosting a 4th of July BBQ, and I could hear guests already arriving next door, but I was loathe to stop my housework. It's been such a rare occurence for me lately to have enough energy to get the housework done, and I just wanted to cram as much in as possible. Finally, by 4:30 PM, we really had to head over there, or risk being really rude, so we all changed clothes and headed over to the party.

It was very hot and bright at the party, but I surprised myself by having enough energy to play badmitton for a good hour or so with some of the other party guests. My energy level over the past couple of years has been so poor, that normally I would have been sitting in the shade, politely cheering on other folks who were playing. But, here I was out in the hot sun, chasing after that silly little shuttlecock. And, it was fun.

What a glorious reprieve from all the heavy cycling my body's been putting me through lately!

At 8 PM, my husband, son and I walked over to the high school to watch the fireworks. We went last year for the first time and just loved it. We brought our favorite blanket, and all lay back looking up at the night sky, gazing up at the stars until the fireworks started. The fireworks were short, it seemed like a shorter show than last year, (budget cuts, maybe?), but the booming finale was still great fun. We loudly cheered the show along with everyone else, and my son laughed and cheered, and shouted: "Do it again! Do it again!" We walked home by flashlight, watching fireworks shooting off from all the different neighborhoods on the way home.

Our neighbors' party was still going on, so we sat with them for a while on their front lawn, setting off small fireworks purchased from a roadside stand. (Fireworks are legal in Gilroy, so there were tons of roadside stands selling fireworks over the past week.) We'd purchased a couple of packs of sparklers, and some small fireworks were bundled in with them. My hubby didn't want to set them off, saying he'd "had a bad experience as a child" with fireworks. I asked what happened, and he said he saw another child get hurt from firewors.

I said: "Well, you and I aren't children, and I think we can safely set these off."

He said: "Be my guest."

So, I did. I read the directions, and set off the little fireworks one by one. They were surprisingly bright and fun to watch. After watching me for a few minutes, my hubby got over his fear and came over to help me light the rest. We had a fun time of it, and were sorry when we finished off all our fireworks.

Alex starts the "Summer Bunch" nursery school tomorrow, and he is going to be one tired kid in the morning. He didn't fall asleep until 11:15 PM or so. There are still fireworks going off all around the neighborhood, but I'm so tired myself I don't think they'll keep me awake.

What an awesome day! I had a whole day without fibromyalgia pain! What a treat!

Happy Birthday America!

My brain was less mushy today!

2005-07-03T20:39:00.000-07:00

Well, as I mentioned yesterday, I thought I might push back my morning dose of guaifenesen, so that my brain wouldn't be such a big puddle of mush for playing guitar at the church.

I have been cycling very hard lately with pounding headaches, crushing fatigue, and severe aches in my arm and leg muscles. I know it's all part of the process of recovering from fibromyalgia, but it doesn't make it any easier when you have things to do, like living your life.

My brain's been mush lately, a fibromyalgia-related condition known as "FibroFog." One of my favorite hobbies is playing music at the church, either with the hand bell choir, singing with the regular choir, or playing guitar in the string/wind group.

This morning, I had string/wind and also hand bells at church. When I awoke, I felt better than I had on Saturday. My head still hurt, but my arm and leg muscles weren't as sore. This was a good sign. Maybe I'm coming to the end of this round of cycling.

I knew if I took my guaifenesen right away there was a chance it could cause me to start cycling again.

So, I just took some Tylenol to ease the ache in my head, and decided to wait to take the guaifenesen until after church.

I got myself to church relatively on time. I was supposed to be there at 8:30 AM for an hour of guitar rehearsals before services began. I made it there by 8:37 AM, which was close enough. I had fun warming up on the guitar, and chatting with the other musicians.

The head of the string/wind group then asked if I would sing in a quartet.

"For when?" I asked.

"Today," she answered, "how well can you sightread?"

So, I said I'd give it a try. We rehearsed the song twice and by the second-time through, I had a pretty good handle on what it was I supposed to sing.

Then, we had just enough time to rehearse hand bells before services began. The hand bell song we did today was a very pretty one-- something classical, but I can't for the life of me remember the name. (My brain truly doesn't function very well when I'm cycling.)

So, services began, and I did fine on the guitar, although I'm still a bit slow on my chord transitions when switching from an "F" chord to a "C" chord.

About halfway through services, it was time for the quartet to sing the song we rehearsed. So, I stood with the other singers in the front of the church and we sang. I was surprised how good it actually came out. No one actually claps in church when we sing or play, (personally, I think they should, especially if they particularly enjoyed the music. Guess it's some kind of church faux-pas.) But, I could hear some appreciate murmurs and a couple of folks caught my eye and smiled at me when we were done.

After services, the pastor said to me: "That was a very nice song. Someone came up to me and wanted to know who you were. They said: 'Who's that blond singer on the end?'"

(I'm still relatively new to the congregation and not known by everyone.)

But, I felt pretty good that I was noticed.

I stayed after church a bit to help clean up, then headed to Target to pick up a big bag of dog food, and hopefully find a Hawaiian shirt. We're invited to a BBQ tomorrow with a Hawaiian theme, and I can't find any of my Hawaiian shirts. I think I may have given them away to GoodWill when we lived in Morro Bay. The climate there was always rather chilly, so I just didn't wear Hawaiian shirts anymore. I wish I would have kept at least one. Guess I got a bit too exuberant in my cleaning out one day. Ah well.

Found the dog food easily enough, but couldn't find a single Hawaiian shirt.

So, I paid for the dog food, plunked it in my car, and then headed over to Ross to look for a Hawaiian shirt. Back when I used to work full-time, my company used to have "Aloha Fridays," where everyone wore Hawaiian shirts and we knocked off work early for a 4 PM Beer Bash. Ah, those were the days. I remember getting some cool silk Hawaiian shirts at Ross.

Times have changed, though. Couldn't find a single Hawaiian shirt there either. Nothing at all in women's, and the stuff they had in men's was much too big. I'm a bit chunky right now, but not big enough to fit into a men's XL, XXL or XXXL, (which seemed to make up the majority of the choices. Man, we Americans must have gotten really fat lately for stores to be stocking that many big clothes!)

As I left the store, I thought briefly of checking some more stores, but I was starting to get very dizzy and irritable-- a good sign that I needed to get home and eat.

Since starting the guaifenesen protocol, I've gotten much more HG-sensitive. (OK, for explanations about the guaifenesen protocol, and the HG-diet, please check my regular website www.surfercouple.com, where I talk about all this stuff.)

In Dr. Amand's book, "What Your Doctor Won't Tell You About Fibromyalgia," he talks about how a good deal of folks with fibromyalgia are also hypogylcemic, and need to follow a hypoglycemic (HG) diet in order to fully recover. I never considered myself very hypogylcemic before. I would have categorized myself as "slightly HG." But, since starting the guaifenesen protocol, the symptoms have become much more pronounced. I feel shaky and anxious if I consume too much sugar. If I have a dessert after dinner containing sugar, I can't fall asleep for hours. (I had a piece of cake on my birthday and was awake until 4 AM as a result.) And, I can't skip meals. Today, I had a light breakfast at 8 AM, as I wasn't all that hungry, and now it was past 2 PM, and I was getting ready to drive home from Target and Ross, and I was getting so light-headed I felt totally stoned. It was difficult to focus on driving, and I made a mental note I should at least carry some nuts or something with me.

I felt better after lunch, finally took the guaifenesen, and then started to get Alex and I ready for a neighbor's pool party, which started at 3 PM.

About an hour after I took the guaifenesen, my head started to pound in earnest again, and my muscles felt completely sore. Ah, more cycling. Lovely.

So, we went to the party, and while my husband and son swam in their pool, I sat in the hot tub. I stayed there for most of the party as the warmth eased my aching muscles. I drank some drink with vodka in it as it I just wanted something to ease the aching in my head, and vodka usually helps. I probably don't have more than one or two drinks a month. But, when I get those real pounders, a bit of vodka definitely helps.

By 5:30 PM, even with the vodka, my pounding head was making me very uncomfortable, and I was wondering how I could gracefully exit the party without offending the hosts. The hosts still wanted us all to play a dice game, so I stayed for that, but mentioned I had to leave right afterwards.

The dice game turned out to be a lot of fun and it helped me forget about my aching head for a while.

Tomorrow is the 4th of July and I'm hoping that I'll have a good day, and my pain level will be minimal so I can enjoy the holiday. Not sure if we're going to go to the 4th of July parade this year. Jovani (my hubby) is busy building a fence in the back, and I just don't have a lot of strength or energy right now. This intense cycle I've been going through over the past week has really wiped me out.

My brain is one big pile of mush.

2005-07-02T22:22:00.000-07:00

Well, my brain is just one big pile of mush this week.

And, I suppose that's a good sign.

The guaifenesen protocol for fibromyalgia causes "cycling." So, when the guaifenesen is doing its job and pulling all that fibro crud out of your muscles, the crud then circulates freely in your bloodstream. All that stuff in your bloodstream makes you feel totally icky, and it even messes with the muscles in your brain, causing something known as "FibroFog."

Dr. Paul St. Amand does a heck of a good job explaining all this in his book "What Your Doctor Won't Tell You About Fibromyalgia." I think I've bought the book about five times by now, as I'm constantly giving away my copy to people I meet who also have fibro, or who have family members of friends with fibro. But, if you're not in the mood to read the book, there's a nice short excerpt article written by Dr. Amand available on this fibromyalgia resource site: http://www.immunesupport.com/library/showarticle.cfm/ID/6023

Hmmm... when I pasted that link above it didn't automatically turn itself into a hyperlink. I suppose I should figure out how to fix that, but I simply don't have the mental energy at the moment.

I've made myself a nice "To Do" list for the next week, and when I first wake up in the morning, and after I take a couple of painkillers for my normal morning headache, I'm all fired up and ready to get at that list. I also take my usual dose of 600 mg. of guaifenesen. Within an hour of taking the guaifenesen, all the fire has gone out of me. My energy is completely gone. My focus is gone. My motivation is gone.

And, in the long run, all that is good. It means the guaifenesen is working as it should and causing me to cycle.

Still, it's hard to keep taking a medication when you know it's making you feel worse. It kind of makes me think what cancer patients must go through with chemotherapy. They now that in the long run the treatments could make them better, but in the short run it makes them feel like absolute hell.

Tomorrow morning I need to be at church by 8:30 AM to play guitar. I think I might cheat a bit and not take my guaifenesen until after I get home from church. Then, I might just have a few hours when my head is a bit clearer, and my hands aren't so stiff. I've definitely been cycling the muscles in my hands lately. A few weeks back, I had the oddest stabbing pain in the middle finger of my left hand. If I didn't know I had fibromyalgia, I would have assumed Imust have somehow strained a muscle there. I mean I'd be in the middle of doing some routine thing, like empty the silverware tray of the dishwasher, and suddenly I'd get this stabbing pain out of nowhere totally incapicitating that finger.

"Just cycling," I told myself, trying to ignore the pain and keep doing what I was doing. At times, it got so painful I just cradled my hand against my chest and finished emptying the dishwasher with the other hand. After about two days, it disappeared as quickly as it had come.

Earlier this week, I must have been cycling some of the larger muscles in the same hand. I was typing up a bunch of emails for my freelance client, arranging all these different interviews with the executives at the company for the July issue of the newsletter. Suddenly, a stabbing pain just completely disabled my left hand. "Just more cycling," I told myself, and continued typing with the other hand. This went on for a day or two, and then disappeared, just as the finger pain had.

At first I thought: "Hey, maybe this is a good thing. If the muscles in my left hand have fully cleared, it'll improve my guitar playing!"

So, I eagerly sat outside on the front patio with my guitar, practicing my most difficult guitar work-- the chord transitions from the "C" chord to the "F" chord.

Nope. No different. It still felt painful and awkward to form these chords. I practiced them anyway. I've lived with pain in one area of my body or another for all of my 36 years and I've always been determined not to let it keep me from doing the things I want to do. So, I sat there working those chords again and again and again.

And, eventually, all those muscles in my hands will be done clearing, and playing those chords will be less painful. Until then, I'll play them anyway, damnit.

Fibromyalgia is part of my life, but I'm not going to let it run my life. Not anymore. I've declared war on my fibromyalgia and this is one war I intend to win.

There's so much more I want to write about-- seeing "Les Miserables" in San Francisco this week, the $400+ I made over the past week selling things on eBay, the iPod Mini I gave my dear hubby for his birthday, the great weather we're currently having, the movie Jovani and I saw last night... But, I suppose those will have to wait for another day.

I must get my sleepy little boy to bed or neither of us will be making it to church in the morning. -dwt