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.

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.

One Year Later

In four days my daughter will be one year old.  In some ways it's been the shortest year of my life but in some ways it's been the longest.  Time spent in pain and sickness goes very slowly.  It will also be the unofficial one year anniversary of the intrusion of Fibromyalgia into my life.  I think I was symptomatic during my pregnancy too but my doctor just kept writing my intense fatigue off as "a pregnancy thing".

Speaking about my doctor, she has yet to respond to  my calls and note.  It's been about three weeks now.  I made an appointment with her for my daughters one year check-up on March first so she'll have no choice but to talk to me then.  My doctor is really a very compassionate dedicated person as well as a skilled physician but working in a small island clinic can be overwhelming for even the best doctor.  I think there are only three doctors in the clinic and they are expected to be on-call in the ER on alternating weeks.  I guess I'll give her a pass this time.

In the meantime I'm doing ok.  As I type this, the joints in my hands are throbbing with a dull pain.  I did a really easy Yoga routine this morning. I think it helped a bit.  The stretching felt good if nothing else.  The fatigue seems to be a tiny bit better this week.  Maybe my new healthier diet has something to do with it but it could be a coincidence.

I watched the film Sicko by Michael Moore a few days ago.  Wow. I knew about many of the issues covered (regarding the heath care system in the US) but I was still shocked to see how so many lives had been ruined or even had ended due to the criminal system we have which puts money before the health of the citizens of our country.  Anyway, I'll get off my soap box for now because I could go on and on.  The film got me thinking, it showed actual health care facilities in other countries (France, Canada, Cuba, etc) and spoke with their doctors and patients.  The care the patients were receiving was much better than I've ever gotten.  In some cases the doctor even visited his patients at home after a procedure.  An inhaler canister a US patient in the film paid $120 for (2 per month) was the equivalent of $.05 in Cuba. I was shocked!  Why do we allow this exploitation!??  I don't understand (oops stepped up on the soapbox again for a minute - sorry). 

I have a friend who just returned from Colombia where she had several very complicated oral surgeries that were going to cost over $100,000 in the US.  The final cost for the Colombian procedure, her housing while she was there (two weeks) and airfare together cost only 1/4 the amount it would have cost in the US.  Not to mention she was very happy with the work that was done and kept remarking about the kindness of the people there.  You can actually hire a sort of "travel agent" to set up procedures for you in other countries including arranging flights, transportation while you're there and housing.  The total cost is much less than it would cost in the US and many times the care is better. 

If my doctor keeps giving me the run-around, I'm seriously thinking about going to another country to get treated.  I'm going to research it for sure.