WTF happened the first day?

I had to, of course, choose my outfit very carefully for this first day. It's like the first day of school. You don't want to be uncool nor do you want to look like you are trying to hard. THEN, I remembered that we were supposed to wear comfortable clothes. Um, yes, that would make sense, but that makes it even harder. Well, I settled on some lovely velour sweatpants and some very sensible shoes and a big comfy sweatshirt.
I walked into the waiting room and was handed a big white binder. I turned to find another woman waiting, with a white binder, wearing MY SAME OUTFIT! Ok, colors were slightly different, but what a faux pas already. What would Perez Hilton think? It did make me think I would have at least one friend there.
This waiting room, as are all waiting rooms, was inexplicably freezing. While people experience Fibromyalgia differently, we all do not suffer cold gladly. Cold tenses up muscles; we all already experience painful muscle tension. This often seems to escape those that treat Fibro. That and that strong fragrances, especially unnatural ones, cause tremendous headaches and yet, so often, as is the case in my ACUPUNCTURIST'S office, of all places, they have those horrible so-called "air fresheners" plugged in everywhere. ARGH.
It turns out there will only be three of us in this six week program. I had truly expected twenty people, somehow looking like Denis Leary's AA meetings in "Rescue Me." Nope, it was me, my doppelganger and another woman. All clutching our bright shiny new binders as if they were the Holy Grail. Of course, we were all hoping that they would, indeed, turn out to be just that.
We were led into a room inside a larger gym by a woman I liked immediately. She is from Israel and, as she put it, "is tough on the outside, but a softie on the inside." We introduced ourselves and it was then that I realized that my doppelganger was half my age. Half my age. I need new clothes.
Our lovely instructor led us through some stretches and I almost tuned out. I have had no less than 30 PTs show me the same stretches over the years. They never help. I felt defeated already. But, there I was, already underestimating Mima. She actually walked me through how those stretches, done at certain times and with certain accessories, would make it easier to do every day tasks. Here was an important difference. She was pointing out what I needed to do to make it work for me. It was soon obvious that an important word for this boot camp was "ACTIVE" not passive. Mima explained that, due to pain and frustration at experiencing even more pain when being active, fibro patients begin to suffer from lack of muscle tone, which then adds to pain. Keeping any sort of muscle tone is incredibly difficult for Fibro patients, even with working out. Adrenaline is pumped out at inappropriate times, and with nowhere to go, tears muscles. Mima, god bless her, is going to teach us how to be active WITHIN REASON (Fibro patients often have a hard time regulating-anyone who knows me should be shocked by that)and make it work for us. Mima gives us homework. I LOVE HOMEWORK! Binders and homework-I almost skipped down the hall. I need to get a new school skirt and patent leather mary janes and I am good to go.
We then had a break and I, having been gluten, dairy and soy free now for a few weeks, (and also trying to lose 45 pounds in 2 weeks for my impending doom, I mean, 40th birthday) was concerned about where to eat lunch in 45 minutes before our next session. The young girl and I decided to bravee the deli in the building. I am not a deli in the building kind of girl. I have food phobias that have food phobias. That could be its own blog. BUT, I was not going to run to starbucks to get a pretend milk shake disguised as a coffee drink, so i braved their version of Lentil soup, and for a special treat, allowed myself raw almonds. I was pleased(-ish) with the food and proud of my will power (for once.) Young Girl (She'll be YG from now on) and I struck up a conversation and it truly is like having a weight lifted off one's shoulders to talk with someone who has the same experiences as you and understands the frustrations of the every day.
What truly struck me while I was talking to YG is that I WAS YG when this saga started. Now I am Old Girl and that is one of the worst parts of this entire disease for me. I really did, in some illogical part of my brain, think I would somehow get back all the days of my youth that had been afflicted by this disease that made me feel old at 20.
Our second session was entitled "Occupational Therapy." In these sessions, we would learn coping skills for quality of life, for work, for family, etc. We talked about all the things that add to our fatigue, including overdoing (again, with the regulating), sensory overload (we can't handle bright lights, loud music, things like clowns, etc,), emotional stress, poor nutrition, lack of sleep (Fibro patients generally don't get Delta sleep where the body can heal itself), and decreased cognition.
This last point was truly interesting to me. I had experienced my once super sharp brain and eidetic memory disintegrate -this was one of the reasons I had decided to stop working as a lawyer- but it had not truly occurred to me that my lack of "smarts" was making me tired. As the sweet and kind Judy explained to me, having to make your
brain work harder to get through the so-called Fibro Fog, generally created by the fact that your brain is so preoccupied by the chronic pain, makes you even more tired, creating more Fibro fog. COME ON! That hardly seems fair, now does it? Judy sent us off with more HOMEWORK, hurray!!
Our last session was "Psychology." I had assumed that this would be like a group support therapy session, since it does seem very valuable to be able to share similar experiences. The psychiatrist leading our session explained these sessions would actually be about teaching us the psychology of Fibro and how our minds can help us build coping skills. She walked us through the Autonomic Nervous System is wonky is Fibro patients and we can't go to the rest phase that follows a fight or flight response. People see a threat and go in that state. Once the threat has passed, a rest and rebuilding phase kicks in. Not so for us lucky fibro patients. Not only do we not go into the rest phase, our idea of a threat is not always quite what any other person might see as a threat. A lion enters your house-yes we would generally all agree that is a threat. For a fibro patient, someone dropping a glass in another room or a light being too bright can also kick in that fight or flight response. So should you see me beating up a lamp, please be understanding. Obviously, being at such an elevated state of alert at all times burns one out. It literally burns out your adrenals. Being in this state of arousal leaves one unable to heal, rest and manage stress. Aces.
She gave us some great suggestions for beginning coping. Breathing, meditation. Now, obviously, these are ideas that I have heard and even tried before. The difference here is that she understands that a typical Fibro patient might hear-you need to meditate and that patient then feels the need to build a meditation room and buy every meditation tape and perhaps even a buddhist monk (again, that regulation problem). She suggested going to http://marc.ucla.edu/body.cfm?id=22&oTopID=22 and downloading a few of the FIVE minute meditations. Baby steps she says-things that can realistically be incorporated into an already difficult day. She also gave us homework.
I think I am in heaven.

WTF Happened-Part 2

Ok, where was I? Oh, yes the heavens had parted and Girl had seen the Fibromyalgia light. It truly was an amazing day. To finally put a name on the amorphous pains and the increasing fatigue that had plagued the Girl was unbelievable.
Girl scours Internet (mind you, it was 1999) and prints out page and page of stories of people with symptoms like hers.
Girl's joy at naming her pain slowly turns to depression as this Internet research came to one pointed conclusion: there was no cure for her newly named disease. In fact, many doctors still did not believe it was truly a disease.
Girl continues on. She goes to miracle chiro three days a week. She also tries several rheumatoid arthritis doctors who "specialize" in fibromyalgia treatment. These treatments seemed to entail more and more medicine, especially anti-depressants.
Girl takes medicine. Girl is a zombie on the floor. Girl refuses medicine. Doctors shrug their shoulders.
Girl has, in the meantime, moved in with an amazingly supportive and loving man. Let this fact not be underrated. This fact may have been the main reason Girl managed to live through the constant pain and fatigue.
Not as supportive-Girl's work. Let it suffice to say, after having nine migraines in 7 days, and receiving little to no support from the place she had once loved so dearly, Girl marched into her boss's boss's office and quit.
Girl's husband, who is only her boyfriend at the time, applauds decision.
Girl decides her health can be her full time job...for now.
That was nine years ago.
Girl had incredibly difficult time NOT being a lawyer anymore. Girl often began (and still does) sentences with "I used to be a lawyer..."
Girl has been doing yoga for years. Friend says to try Pilates.
Girl meets PT at Pilates who tells her to go to endocrinologist who is "performing miracles." Endo runs tests that indicate Girl has human growth hormone of 60 year old woman.
Girl agrees to shoot Human Growth Hormone into herself every day. Girl secretly wonders if HGH will make her into a 20 year again. HGH does not.
Girl does feel better-ish. Girl works out 30 minutes and shoots up with HGH every day. Girl also takes wellbutrin during the day and ativan to sleep and goes to Feldenkrais twice a week.
Just as Girl has found a program that works, alarm, alarm! Girl's biological clock starts going off. So Girl must go off...all her meds...this takes six months and then..boom..pregnant!
Girl has difficult pregnancy-let's brush over that whole thing-and is blessed with an amazing son.
After recovering from a C section and breast feeding for 8 months, Girl tries to go back on meds. Where Wellbutrin made her body and brain happy prior to pregnancy, it now makes her craaaazy. She tries old med after new med again and again. Girl also has a wonderful bouncing baby boy now. Girl is terrified she will drop beautiful boy so Girl gets amazing nanny.
Girl is very lucky.
One lovely May morning, Girl wakes up with invisible spear piercing her left temple. Girl feels as if she is, while being pierced by said spear, also wearing a large hat with a grey feather that is just out of her peripheral vision. Girl's pain is at that really really sad face on the pain scale.
Girl runs from eye doctor to tumor doctor to stroke doctor, from MRI to CAT scan. Medicine after medicine is prescribed, including some that make her crawl into a closet for fear of her life. She is given the "Superbowl Migraine Medicine" which makes her nose stuffy, but little else. She is given a fentanyl patch which makes her pass out. Doctor who prescribed it is surprised to hear that patches had recently been recalled due to inexact dosages.
Girl does not seem to have a tumor nor did she had a stroke. All good news, but what is left? Doctors think it is a migraine. Girl has had migraines for years. Not a migraine. Doctors also discover Girl has hole in heart-a genetic defect that many migraine sufferers have. Girl is assessed and it is decided heart surgery to close hole is too risky, so doctors suggest waiting until AFTER her first stroke to fix said hole. After all, who knows when that will happen? It'll be so much fun to wait to see...
Girl is given neurontin and lexapro and adds the less sharp spear in her head to her bag of tricks that she carries with her.
After a year on those meds, Girl weans off to see what is underneath. Is the spear gone? Is she better? Does she need different meds? Can she please just be off meds?
Girl is not better. Girl wants to try more new things, so follows advice of friend and drives hours to see yet another new doctor who swears and promises this clinic has the answer. The answer, it seems, entails many, many hormones and medicines that the clinic makes itself. Health insurance company is unimpressed and refuses to cover. Girl is desperate so continues to drive hours and pay hundreds for hormones.
Girl slowly turns into Jack Nicholson from the Shining. Girl believes world will come to an end; Girl believes there is no hope; Girl begins drinking with invisible bartender from the 20s...
Girl's father insists she see one of his students at a major LA hospital. Girl does not want to see yet another doctor. Girl finally goes when she thinks of chasing Olive Oyl through a maze in upstate New York.
New doctor is a revelation! Not only is she up to date on fibromyalgia, she also believes in combining Eastern and Western Medicine!! Girl starts on a treatment on acupuncture and meds, including back on the neurontin and lexapro.
One day, husband reads in paper about amazing Fibromyalgia boot camp at different major LA hospital.
Girl wants in. It take several months, but it happens. Girl cannot believe that there is a place where people not only believe in Fibro, but have ideas how to manage it and want to share those ideas.
So here we are...and here we go....

WTF Happened-Part I?

How did I get here? Let's see if that can be summed up:

Girl with double major in English and German Lit, minor in Art History, who works for an estates lawyer and paints in her spare time, develops insane pain in her hands in 1990. The pain moves into her shoulder and shoulder blade.

Tendinitis doctor: You have carpel tunnel.
Carpel Tunnel doctor: You have tendinitis.

Girl must take winter quarter finals orally. Most fun oral exam: "Logic", and by most fun, I mean, one that makes one want to vomit.

Doctors conclude: Girl is simply a hysteric, unable to deal with the stress and pain everyone feels.
Girl decides: law school would be least stressful place to go.

Girl truly loves law school and makes it through somehow-swimming and lots of drinking may have done the trick at that point. Girl also tries chiropractors and acupuncture. Girl finds several acupuncture needles in her skull after third visit to scary dark Chinese medicine store, where they also make her drink dark, gloopy medicine. Girl decides to drink gin and tonics instead.

Girl moves to West Coast to be full time entertainment lawyer and full time girlfriend to drummer.

Girl studies for the Bar. Girl writes for five, six hours a day. Three days before said Bar, Girl's hand refuses to close around the pencil any longer.

Girl must cancel the Bar. The BAR. That test that was to determine the rest of her life. That test for which she had studied for eight hours or more the entire summer. That test that all her other classmates were taking.

Girl gets to, instead of taking exam to be lawyer, do physical therapy and wear a super attractive plastic cast on her right hand. A cast that does nothing to keep drunk idiots from bumping into her at shows.

Girl tries to get a minimum wage job at mall. Girl is denied. Girl tries to tutor. No one needs a tutor who cannot write. Girl's life is not going where she had imagined it.

Girl, finally, gets to type the bar and passes! Hallelujah!

Girl finds job at entertainment law firm which is 2.5 hours of driving away from boyfriend's apartment. Girl drives stick shift truck with no radio or air conditioner 2.5 hours each way. Girl is not happy. People who know Girl and must be around Girl are not happy.

Girl's new job is interesting and challenging, but Girl cannot understand what is going on with her pain levels. Her hand is working sometimes, but often times, her whole body is in such intense pain that she cannot focus on anything. No use going to another doctor, right? Girl is just a baby. Girl just can't handle what everyone else can handle and her hand issue? Well, no one knows, but it doesn't seem serious. Well, unless you call not being able to use it serious...

Girl continues like this for several years. She moves to new, even more interesting job. Girl does not want to be a whiner (but she knows she is, sometimes.) Girl just wants to do what she wants to do. She tries different nutritional diets, different PTs, different massages, different chiros. It's all random. She struggles to get by and tries to use voice activated software to substitute for her inability to write. It's the late 90s. Voice activated software was like Pac-man. It does not help, except in creating interesting automatic writing poetry.

One day, Girl's hand and back are causing her to be in agony. Friend suggests her chiropractor. Girl, in desperation, runs to one more chiro. This wonderful and kind man says the magic words to her: "You have fibromyalgia," and the sky opens up and the angels begin to sing.

What did the angels sing? Tune in tomorrow and find out...

WTF am I writing this blog?

The first blog must be the hardest to write. I know I am having a hell of a time with it.

I'll begin with the reason for this blog: I have been in pain for most of my adult life. Much of that time, the reason for that pain was a complete mystery. More recently, the reason for the pain is only a slight mystery. I have sought answers in every modality and with (almost) every doctor in various metropolitan areas. There has been so much contradicting information and advice and recommendations. So many doctors have thrown out what the last doctor has said and the eastern doctors versus the western doctors could be its own video game, with how much vehemence they generally have for one another's perspective. I have had such a difficult time sorting through the information. I will be starting a Fibro "Boot Camp" at a major hospital next week and I wanted to document that experience. By documenting that experience, I hope to get a better handle on my progress in this program, as well as share this knowledge with other fibro patients.