The Latest Research...

After becoming so frustrated and angry with my Rhumatologist, I've decided to dump her and do some serious research into this Fibromyalgia crap myself.  I created on-line accounts with a few medical journals and medical publications and have started reading what ever I can find on-line.  What ever did we all do before the Internet?  Since I don't have any medical training other than the few years I worked as an Administrative Assistant at the Visiting Nurses Association, I admit it's been very slow going.  I've had to stop reading to look up a few words, phrases and acronyms and some of the articles are almost completely incomprehensible to me.  

However, I have read some very  interesting studies that have been done with respect to Fibromyalgia.  The seeming absurdity of some of them only reinforces what I've inferred since day one...no one knows squat about this thing nor do they even know what studies to conduct.  Many of the studies are about different drug reactions or interactions and pertain to symptom treatment only and don't address causes or cures.  It is all very depressing which I know isn't news to anyone else suffering with this.  All I can do is keep reading and hope I find something helpful.  I'll be sure to share if I do.

Am I Missing Something?

Either I've missed something major in my research or my cognitive abilities have been more compromised than I thought.  If anyone reading this post could offer some insight I may have missed I would really appreciate it.

For the past year and a half I've learned more than I care to about antidepressants (SSRIs, SNRIs, Trycyclic, etc.) and other forms of medication from pain killers to anti-convulsants and sedatives.  I've been prescribed about ten different medications (so far) by several doctors as I've tried desperately to get some relief from my illness.  Right now I'm taking 200mg Welbutrin, 60mg Cymbalta, 100mg Neurontin and 2mg Lorazepam once daily.

Actually, antidepressants are far from new to me.   I've been taking them for about fifteen years.  I've suffered with depression for as long as I can remember with my earliest memory of being depressed taking place in my second grade classroom.  But it wasn't until 1995, while I was attending college, that I was finally diagnosed  with Major Depression and medicated.  Since then I've probably taken most of the antidepressants on the market.

About eight years ago I developed severe Panic Disorder and started taking Lorazepam for acute attacks.  After my panic became partially controlled I used Lorazepam on occasion to help me sleep.  A year and a half ago when I became ill with Fybromyalgia my sleep was severely disrupted as it is with many sufferers.  I couldn't stay asleep and I was plagued with disturbing dreams and horrible nightmares.  I started taking the Lorazepam again and it magically helped me sleep without any noticeable side effects.        

OK so, here's where the confusion starts. The last two doctors I've seen have insisted that I stop taking Lorazepam due to it's "addictive" nature.  I've been prescribed other medications that are meant to replace it, the latest and greatest of which is Neurontin.  I took the prescribed dosage for about six weeks and never experienced any reduction in the side effects which were SEVERE and included nausea, dizziness, migraine headaches, confusion and excessive tiredness.

I'm not understanding the logic here.  Although Lorazepam is supposedly addictive, I've been taking it on and off for eight years.  When I do take it, I'm able to get a good night's sleep, wake up feeling rested and without side-effects.  I've gone days and even weeks in the past without taking it and never experienced any type of withdrawal (which I have from other medications).  The fact that Lorazepam is addictive seems beside the point in this case.  It has worked well for me consistently and I haven't had any ill effects that I'm aware of.  The same cannot be said about the drugs that have been prescribed to replace it.  What am I missing?  Is there some type of stigma attached to the prescribing of Lorazepam (Ativan) in the medical community?  Is it some kind of taboo?  I 'm thoroughly baffled and can think of no other reason that my doctors would be so adamant that I not take it.  Any insight on this?

Mom to the Rescue

Tomorrow I will finally get the help I've needed for so long. After so much struggling and sickness I will be able to rest and hopefully begin to get well. Trying to manage this hotel at peak season, take care of my daughter and deal with my childish husband all the while feeling only partially alive has had me wondering more and more why I keep going. After becoming very concerned about my current state of mind and hearing my desperation through the phone, my mom booked tickets on a flight from Newark to LA that arrives tomorrow. My hope is that I will actually have some extended periods of time to rest and recuperate. I'm ecstatic that she's coming but at the same time, humbled that at age 38 I need my mom to fly across the country and rescue me.

My husband left about a half an hour ago after I told him his choices were the couch or his boat for the night. His immaturity and insensitivity have hurt me one too many times. Although I have asked him thousands of times to take over doing things I can't do anymore, he refuses to pick up the slack. My requests are always met with a roll of the eyes or sigh and often a sarcastic remark. I can't understand how he can be so insensitive to my suffering. It stuns me sometimes. He sees me pushing myself until I'm sick and just sits there watching (or not watching). When I ask him why he hasn't done something I've asked, he tells me he's been busy doing other things. I've decided that I'll stop trying to psychoanalyze his bizarre, hostile behavior and simply not tolerate it anymore. It's so important for me to have a strong support system. I've always hated to ask for help but realize that it's a necessity at this point in my life. I physically can't do the things I once could. I certainly don't need someone in my life making things more difficult for me both psychologically and physically .

Although this is the first time in my life I've had to deal with a debilitating physical illness, the experience of a failed relationship is far from new. If our marriage fails it will be divorced number two for both of us. This time though, there's a whole new dimension to be considered. We have a precious daughter. She loves her father so much and when I think of taking her away from him tears instinctively fill my eyes. One of the few positive things I can say about my husband is that he's a good father. 

I'm just beginning to realize why, for my whole life, I've been so adamant about not having children.  I'm not suggesting that I could have predicted being stricken with this terrible disease and I know that caring for my daughter would be considerably easier if I were well, but I still have this nagging feeling that I've made a big mistake. I desperately hope my little girl doesn't suffer because of my bad judgments. I know I made a mistake in marrying my husband but I've known that for some time. This is the first time there's an innocent bystander.

After a week with no response from my doctor I've decided to take matters into my own hands. I halved the dosage on three of my medications and seem to be experiencing fewer side effects. Unfortunately some Fibromyalgia symptoms are returning. I'm having more pain than I was last week, but not nearly to the degree it has been in the past.  I'll keep experimenting and hope that I can find a point where side effects and symptoms are at a tolerable balance.

The Latest Boring Update

I'm finding myself in a very familiar situation but it's not de ja vu.  I've called and left two messages for my doctor, the first on Tuesday and haven't gotten a response yet.  I've cut back on my medication because I can't handle the side effects any more.  I've been feeling so nauseated and having such strong vertigo for the last two and a half weeks that I couldn't get out of bed a couple of days ago.  I've been feeling progressively worse not better.  I'm beginning to think that either the Cymbalta, the Nurontin or the combination of the two are not going to work for me.  This is particularly frustrating since I paid almost $300 for fifteen days worth of the Cymbalta and had to jump through a lot of paper work hoops to apply for the patient assistance program.  It looks as though all of my work may have been for nothing.  Work that was done while I was experiencing a great degree of discomfort and wanted only to be laying in my bed, in the dark.  I seem to be able to ward off the worst of the migraine headaches by staying really hydrated.  I realized that I was loosing a lot of fluids due to my excessive sweating.  I hope my doctor calls tomorrow with some encouragement but I'm fairly sure I'll be the one making the phone call.

Peaches & Cream & Funky Carpet

My doctor has prescribed some new medication.  She took me off Zoloft and Flexoril and replaced them with Cymbalta and Nurontin.  Both of these new medications have some seriously inconvenient side effects .  I've been on them for about two weeks now and I'm still feeling nauseated, dizzy, super fatigued, weak and sweating like a pig.  In the past couple of days I've also been getting horrible headaches along with everything else.  I feel horrible.  I'm trying to run the hotel while taking care of my seventeen month old daughter at the same time and it's really sucking the life out of me.  This is our high season here and the phones are ringing off the hook.  The moment I pick up the phone my daughter screams on the top of her lungs which makes for a great impression to potential guests. 

It certainly doesn't help matters that I've found my husband is pretty much unable to deal with my illness.  Somehow, he feels sorry for himself and thinks he's getting the short end of the stick.  I have to keep reminding him that I'm the one who's sick and that it really sucks for me too (to put it very mildly).  Today I had a mini-meltdown (if there is such a thing).  My husband had apparently dumped water on the carpet (again) and neglected  to sop it up thoroughly.  Since it's been really warm the past few days, the spill, of which I was unaware of until today, had started to ferment making the carpet smell somewhat like cat piss.  This is not the first time this has happened and  I thought we had learned last time that when you spill something on the carpet and don't clean it up (especially in the summer) it quickly takes on a life of it's own...literally .  This smell does wonders for my nausea.  Well, this afternoon as I was discovering the source of the horrible smell, my daughter walked over to where I was sitting on the carpet and proceeded to slowly pour her peaches along with the syrup from her fruit cup on to the floor next to the existing funk.  I pretty much lost it at that point.  I just layed down on the floor and cried.  My daughter was very confused and a bit distressed I think because she kept trying to lift my head with her little hand.  My husband had been trying to take a nap because he had to get up at five am to take out a fishing charter.  I walked in the bedroom and told him I was sorry, but he was going to have to forgo the nap for today.

I'm Actually Still Here

I've been so busy recently that I haven't had time to write.  This is due in part to my recent remission from Fybromyalgia or what ever the hell it is that I have.  I started feeling so good that I was able to do things I hadn't been able to do in a long time.  I resumed my exercises and was able to really put myself into marketing the hotel for the beginning of our high season.  My efforts seem to be working so far.  I've been taking many bookings and I already have several weekends during the summer sold out.  Considering I'm paid only commission on what I sell, this is looking better and better.

I finally went to see a real Rhumatologist.  She ordered bloodwork and my ANA came back positive again.  So, she ordered more bloodwork to try to get some more details.  I got the results today.  My ANA was positive again, 1:80 with a speckled pattern.  Everything else she tested for came back negative.  She was supposed to call today but her nurse said she was seeing patients back-to-back all day.  Oh, I'm so used to this.  I would be shocked if a doctor actually called me back when they said they would.  Anyway, I've had some episodes of not feeling very well (like after my cousins from Sweden left after visiting), but I've been feeling pretty darn good. Still not back to the way I felt before I got pregnant more than two years ago, but I should be thankful for what I have now.  After all, I can walk and carry my daughter (short distances).

One of the symptoms I had been suffering with was shortness of breath.  I have to share something that has really helped me with this.  A couple of years ago I got a pair of Earth brand shoes.  I hadn't worn them in a while but dug them out of the closet a month or so ago and have been wearing them regularly.  If you're not familiar with Earth shoes I'll try to briefly explain them.  The company makes footwear using eco-friendly materials, ethically responsible methods and they're actually made in the USA.   Being the tree-hugger that I am, I was instantly attracted to the company and decided to try a pair.  The really unique thing about them is that they use a "negative heel" technology of their own invention which puts your heel 3.7 degrees LOWER than the front of your foot.  The advertisements claimed that the negative heel actually put your spine into proper alignment, easing back strain, poor posture and opening the chest up for less labored breathing.  All of these claims seemed too good to be true but happily they're not.  I'm just a hair under six feet tall so I've always had a bit of a slumping posture.  When your sholders are slumped forward it really does impact your lung capacity.  Once I started wearing these shoes again I noticed I wasn't nearly as short of breath.  The company also claims that since you're essentially walking "up hill" all the time, you burn more calories than walking with a shoe where the heel is higher like all other shoes are.  This part I can't speak to but I really recommend them for improved posture.

 

Patience and More Patience

When I first started researching Fybromyalgia I kept reading that patience was one of the most important factors in successful treatment because it often took months or even years to get a definitive diagnosis.  I desperately hoped this would not be the case for me but who was I to think I was going to have it easier than anyone else. 

It's been six months since this most recent flare started and I really don't have any answers yet.  I finally went to the mainland yesterday and saw an actual Rhumatologist.  She asked me lots of questions I had never been asked before.  She had me walk across the room, bend down and touch my toes and poked my body to check for trigger points of which I had none.  So, as a result I don't fit the criteria for Fibromyalgia according to her (and many other sources I've checked).  She was thinking  it might be a viral thing like Epstein Barr or Lyme Disease.  She ordered blood work and I still haven't finished paying off the first round.

So, I go back in four weeks and have blood drawn in three.  It's so very hard to be patient when all you want is to know what's wrong with you and why you go to doctor appointment after doctor appointment and have no answers.  It's a bit of a comfort to know that there are many people going through the same thing right now, although I wouldn't wish this on my worst enemy.

The Light at the End of the Tunnel......Maybe?

After lots of searching and asking around, I finally found a rhumatologist who would graciously see a "cash patient".  I made an appointment for the end of the month.  No one at the office seems able to tell me how much this consultation will cost so I'll just have to cross my fingers that it won't wipe me out completely.  I've taken some money out of a retirement savings account I have and I hope it will be enough. 

This experience has reminded me of one thing, what it feels like to be discriminated against.  I've been discriminated based on my income level before.  I grew up in a middle to low income family and have always dated/ married men who were from as poor or poorer families than mine.  As an artist and non-conformist, I have never sought a job that paid big bucks.  I was always content with having enough money to pay the bills and a little left over.  My current job pays practically nothing.  My main compensation is my housing.  I get paid commission on the rooms I book but in the winter that can be almost nothing.  Since I make so little and don't have health insurance, I'm enrolled in Charity Care and Patient Assistance at the clinic.  These programs only cover certain things, so for the rest I'm on my own.  There is definitely a stigma attached to those who have no other choice but to participate in these programs.  I have experienced it many times.

Stunned ....Hopeless

I'm still feeling the same - horrible.  I've patiently waited weeks for my doctor (a GP) to call specialists for consultations on my condition.  Although I appreciate her intention, to treat me without my having to actually see a specialist, she obviously doesn't have the time to devote to the task.  If you've read any of my previous posts you already know how many unanswered messages and even notes I've left for my doctor and how many days it takes her to "get back to me".  Because I have no insurance or money for that matter, I've had to sit by and suffer for months. 

I was talking to a friend recently who strongly urged me to see a Rheumatologist regardless of cost.  She suggested that I might have to charge it on a credit card or get a loan to find out what was really wrong with me...if I even had Fibromyalgia.  Just the thought angered me, but maybe it was the only way.  I knew the name of the doctor my doctor had been consulting with and I looked him up on the net and found his office number.  I called and asked to make an appointment.  The woman I spoke with on the phone asked if I had a referral from my doctor.  I explained that the referral I had wasn't for insurance purposes but rather a "word of mouth" referral.  She asked if I had insurance and when I said I didn't, she dismissed me and said that the doctor didn't accept "cash" patients.  Thoroughly confused, I asked for clarification.  "We don't accept patients who don't have insurance" she stated coldly.  I didn't know what to say.  I couldn't believe that the doctor wouldn't see me because I didn't have insurance.  Wasn't that discrimination?  I hung up the phone in disbelief and I cried.  I felt completely helpless and hopeless.  Seeing the specialist had been my last hope and now that hope was gone.  What if no doctor would see me? 

So Much for Tijuana

I've visited what seems like millions of "Medical Tourism" websites and haven't had any success.  I emailed the facility in Tijuana and I got a reply which implied they could help me.  I started to feel encouraged but a bit apprehensive, after all Mexico isn't the safest place to travel these days.  I did a search for reviews of the place and I only found one which was terrible. I found some other agencies and emailed them for information but all of the replies read that they were very sorry they wouldn't be able to help me.  It seems that most of the medical tourism agencies only do business with facilities who specialize in major surgeries or cosmetic surgery.

I was supposed to have had a long overdue doctor's appointment yesterday.  I never did get a response from my doctor after leaving two messages and a note.  I called the day before my appointment and left yet another message.  I wanted to know if she had contacted the Rhumatologist as promised during my last appointment which was about a month ago.  If she hadn't, then there would be no point in my coming in and paying $77 for an office visit.  Someone from the clinic called yesterday morning to say that my doctor had not spoken to the Rhumatologist because he had been "out of town" but was due back that day.  She had planned to call him later in the day, so there was no point in my coming in until she had spoken to him.  I made a new appointment.  So I wait in weakness and pain for another week.

This has been a hard week.  I've been particularly weak and short of breath.  My shins and forearms have been very sore, actually every part of my body has been sore.  I'm feeling depressed and discouraged.  I don't know what to do.  Thank goodness I have my crochet, something I can do laying down, or I would probably go insane.

Slowly and Painfully, Realizing My Altered Existance

As I wait day after day for my doctor to call, I'm realizing that this is it.  This is my life now.  Maybe there are some pills I can take every day for the rest of my life that may subdue my symptoms but I will never be the same.  I've missed so many opportunities that I thought I would have had years to realize. Of course someday I would become unable to do things that required physical ability, if I were lucky enough to live that long, but I'm thirty-seven.  I thought I would have had more time, but that was really very naive I suppose.

Four nights a week my husband, who is a boat captain, skippers a water taxi in the harbor.  When my daughter and I visit, he often takes us for a short ride to find seals or sometimes even dolphins right outside the harbor.  Last time it was just after sunset as we motored back into the harbor.  The lights of Avalon were coming on but the mountains were still silhouetted by an ever fading purple sky.  It was painfully beautiful.  The breeze blew across my face and through my hair and my daughters fine wisps of hair danced like tiny feathers.  I started to cry silently as I realized how much I missed Perdida.  She was the 35' Allied Seabreeze yawl (and the obvious inspiration for my screen name) that my significant other and I lived on for almost four years.  I could almost see her elegant lines and teal colored hull tied up to a mooring in the harbor as I had seen her so many times before.  Tears ran down my face.  I remembered sitting in the cockpit on an evening just like that one with a glass of wine in my hand, the boat rocking gently and my feeling so lucky, that I pondered my situation almost in disbelief. 

My parents always had a boat while I was growing up.   As a child, I suffered from undiagnosed & untreated depression. The rocking of the boat and the smell of the sea air were my anti-depressants and psychotherapy I suppose.  My father had been in the Navy and then lived on boats, worked on boats, helped build boats and just loved everything about boats.  He jokingly called himself a viking, not for his love of pillaging and plundering of course, but for the sea and his Norwegian heritage.  The first boat I remember our family having was a 37' wood-hulled cabin cruiser fittingly named Valhalla, which was the name of almost every other boat my parents owned.  As a little girl I felt so safe on the boat with my dad and mom.  Sleeping in the v-bunks with my younger brother at night, our stuffed animal-filled nets swinging against the wooden bulkhead was true bliss.  Anytime I was sad or troubled, I closed my eyes and brought myself back to that v-bunk. I tried to recreate the sound of the water swishing and gurgling past as the bow split through the water, the wooden hull the only thing separating my body from the sea.  I even tried to feel the gentle motion of the wooden boat. To own my own boat and go on great sea adventures was my great aspiration from childhood and on to adulthood.   I was partial to sailing boats though, or at least I thought I was.  I had never actually sailed on a sailboat. 

By the time I'd graduated college and joined the rat race I'd read almost every cruising book I could get my hands on.  From Francis Chichester's account of the first solo Around the World race, to "Managing 12 volts", I'd read and studied them all.  I lived in New Jersey but worked for a software development company in Mid-town Manhattan.  I had a one hour train ride each way and I used my time wisely by reading. One particular moment stands out in my mind for some reason.  I was reading Beth Leonard's "Cruising Handbook" on the train ride home, when I looked out the window to see the graffiti covered brick walls of one of the many factory building that lined the tracks.  In my heart I thought "I'm really gonna do this! I'm gonna sail outa here!".  A shiver of fear or anticipation ran through me that I'd never felt before.

In addition to all my reading, we had taken lessons, gotten our American Sailing Association Certifications, and Chart Navigation Certifications.  My significant other and I went to SailExpo every year in Atlantic City, attended all the seminars and took serious notes.  We really felt that we were ready for the next big step.

After a couple years of preparing we bought a boat.  Perdida.  She was more than we wanted to spend, but we fell in love with her instantly.  She was a classic beauty.  The day we took ownership I had a paralysing panic attack.  This, a time of total confusion and terror like I had never felt, was merely a glimpse into my near future, when I would be absolutely tortured by anxiety and panic for the next two years.  But that time in my life could fill a book by itself, so I won't start that story here. 

After two years of sailing Perdida in NJ and NY waters, we had Perdida's masts unstepped and loaded her on a huge truck to be shipped across the country to Newport Beach, California.  The plan was, from there, to sail her to Hawaii which we figured conservatively to be a twenty-two day sail in open ocean  After a couple years of living on Perdida in Avalon and Two Harbors and never being on the same page about anything, we broke up.  He's living in Hawaii now and I'm still here on Catalina.  It's another story I won't digress into now.

I wanted to tell my story that led up until now to try and convey the great amount of energy and self that was spent on this endeavor.  I wanted to emphasize how much of my being was completely consumed in order to achieve this purpose.  My boat meant everything to me and had become a part of me.  I realized one day that I had subconsciously anthropomorphised her into a creature that I lived inside and that protected me and loved me.  The day I watched her sail out of the harbor without me, broke my heart into so many pieces that I cannot put them back together. I cannot let go.  Perdida represented my future, and now I feel I have none.

Now I know that my chance has passed.  I could  never sail a boat now, I can barely walk up a flight of stairs.  I'm still coming to terms with the profundity of this disease, mourning the life I could have had but is now impossible.  My life has lost a dimension.  Every day is spent in my apartment with my daughter and my husband if he's not working.  I can go out once a day if I'm up to it and walk as far as the pier before I start feeling too weak.  Then it's back home to lay on the couch dripping with sweat, short of breath and hurting everywhere, to recover from my adventure.  The occasional phone call or winter hotel guest to check in, just makes me have to move when all I really want to do is lay down and sleep.  I've been repeating this dreary routine every day for the last six months, which feels like years.  I could never hold down a "real" job.  I really don't think I could do it.

I found out today that my doctor won't be back in the office until the 14th.  So nice of her to return my two calls and note before she left.

Still Waiting...

Yesterday I summoned all the energy I had, got my daughter ready and carried the stroller and her down two flights of stairs to get out to the sidewalk in front of where we live.  On days when I feel "good" this is what I have to do to check the mail or go to the market.  When I get to the sidewalk I have to walk to the market and post office or anywhere else in town I want to go.  Many people on the island own a golf  cart to get around but we don't have one.  There's a fifteen year wait to get an actual car on the island. 

So anyway, I gathered up some of the articles I mentioned in one of my last posts and put them in an envelope.  I typed a short note to my doctor and my daughter and I walked to the clinic.  Well, I walked, she sat. I dropped the envelope off at the front desk and then we had to walk back.  By the time we were walking back I was feeling horrible.  I was sweating profusely, I felt short of breath and my legs were weak.  When we finally got home I nearly passed out.  Something I used to do with such ease and speed is now like going on an expedition.  I used to run up and down the stairs to my apartment not thinking twice about just running out for something I forgot at the market then running back, my respiration only slightly faster than it was before.  Now I can leave the apartment only once a day if I'm lucky.  There are many days I wouldn't be able to even walk down the stairs never mind walk anywhere.  There are many days I never leave my apartment.

I still haven't heard anything from my doctor.  I left two messages and of course the documents.  Maybe it's just taking time for her to digest them.  And so I wait another week.

Dire Prognosis

I've been researching the causes of Fibromyalgia.  Of course no one really knows the cause for sure, but there are many theories.  Just like the myriad symptoms, theories of it's cause are equally scattered.  I have not found anything however that questions an environmental cause.  I admittedly haven't researched this subject that well but I'll keep looking.  Environmental causes need to be explored.  Unfortunately fibro doesn't have much history since the diagnosis was only defined in the 1970's I think.  There doesn't seem to be any data as to whether instances of fibro have increased, decreased or stayed the same.  I learned that in the past, especially since most sufferers are women, Dr.s wrote the symptoms off as hypochondria or some other psychological disorder.  How horrible that must have been.

I haven't really found anything very encouraging.  The consensus for many is that you just have to modify your life.  That there are just some things you can't do anymore.  This is so depressing.  It may be true, but I'm just not ready to admit it yet.

I went to the Dr. today.  She's a GP so she doesn't know a lot about fibro.  In fact she said that she's learned everything she knows about fibro since treating me.  Since I can't afford to go to a Rheumatologist, my GP sees me, I tell her what's going on, then calls her Rheumatologist friend and he advises her on how to treat me.  She said she'd be calling me within' a week.  It's a pretty pathetic system, but it's so nice of her to make the effort for me.  She's very understanding about my financial situation (which is pretty bad).