My story of Fibromyalgia and the Guaifenesin Protocol
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.
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."
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.
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?
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.
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.
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 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.
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.
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.
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.
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.
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.
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.
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…
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