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? 

Sitting With Old Men and Pigeons

Today my husband took care of our daughter and gave me a "day off".  Of course it wasn't really a day off because I used the time to catch up on hotel and personal business.  I went outside at one point to check the mail (we don't have mail delivery here so we all have PO boxes).  It was a really windy day, actually a gale, but sunny and a pleasant temperature.  I would have loved to go for a walk but being that I'm too weak these days, I sat down on a bench near the ocean and watched people walk by.  There were a couple of old men sitting on benches nearby also.  I felt like I too was old.  A couple acquaintances stopped for a quick chat, but eventually continued on.  Finally I got up and started home although I had to stop once more from fatigue before getting there.  My legs just don't work well anymore.  The muscles just burn and begin to give out.

Next Stop... Tijuana

My husband's mother has been stabilized and discharged from the hospital.  She's staying with one of her sons until she's well enough to go home, so my husband has spent several days on the mainland with her.  My mother has been visiting and was able to help me care for my daughter as well as help with housework while my husband was gone.  I realized suddenly that if my husband were ever gone for an extended period of time, I wouldn't be able to care for our daughter alone in my current condition.  After my mom left yesterday I started seriously thinking about having to move closer to my family.  I thought with profound sadness that I may have to leave this island that I love so much and move back to NJ, a place I do not love, even though I was born and raised there. This notion filled my heart with such sadness that I cried.  I don't know how I would mentally survive such a move back to the Gotham City gloom that is New Jersey.

I have an appointment with my doctor next week.  If she gives me the same run-around, I'm moving on to plan B.  I've found a treatment center in Tijuana that specializes in fibromyalgia, chronic fatigue, etc.  I cannot afford treatment in the US anymore.  I had started researching treatment in other countries through the somewhat new field of  "Medical Tourism" when I discovered the treatment center in Mexico.  I've emailed them for more information.

I Can Hardly Lift My Baby Girl

My cousin, who I haven't seen in fifteen years, is visiting us for two days.  We've been doing a lot of catching up.  She's been telling us about her adventures hiking all over the world and mentioned wanting to do some hiking while she was here on the island.  I gave her a hiking map and sent her on her way.  She hiked the trails I used to hike regularly but haven't seen the summits of for over a year.  I said that I'd love to go with her but that I'm not able to since Fybromyalgia took over my life.  I don't know if she really understood but she acknowledged what I said and went on her way.  I went home to take a nap since I'd overexerted myself big time walking as far as I had.  I viewed her pictures of the Pacific Ocean from the other side of the island when she got back and I knew I may never see those views with my own eyes again.

My husband is back for a few days before he returns to the mainland to take care of things with his mom.  She's out of the hospital but not doing very well.  I suppose they're just trying to treat her symptoms and pain now.

I took my daughter to the doctor today for her one year check up.  My mom, who is visiting from NJ, came with me since I am unable to pick my daughter up and carry her for any length of time.  My mom carried her into the exam room and to the scale to have her weighed.  I felt like and unfit mother.  I can barely take care of my own child.  When I found out she'd only gained 1.75 pounds since her last check up three months ago my heart ached.  The doctor said she was still within average limits but I felt negligent anyway.  I'm beyond frustrated.  Will I ever be able to live again?

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.