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 Wildest Dreams

A few days ago I watched the documentary film, "The Wildest Dreams".  Conrad Anker, an accomplished mountain climber, finds the body of George Mallory five hundred feet below the summit of Mt. Everest.  The body is surprisingly preserved on the frozen mountain, his letters and papers still perfectly legible.  One of his legs had been severely fractured, the bone had ripped through the skin and several ribs were broken.  Mallory had aspired to be the first human to reach the summit of Mt. Everest in 1924 but never made it off the mountain alive.  The film documents Anker as he becomes obsessed with discovering whether Mallory had reached the summit and was descending when he fell to his death or if he had still been on his way to the top.  Was he the first to reach the summit or not?   There isn't any conclusive evidence either way.  The knowledge of his success or failure died with him.

Aspirations are such a strange and uniquely human phenomenon.  No other living being aspires to be anything other than it is or wants to be anywhere it isn't.  To some, dreams become an object of obsession and the only purpose for living, while others are content to think about them from time to time, then put them away in the backs of their minds to carry on with life. George Mallory allowed his dream to become more important than his life or his family.  I wonder if he would have said it was worth it.

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? 

Me, the Sea and My Life Now

At the end of my last post, I was still living aboard Perdida with Mike.  We had lost our very beloved fourteen year old dog Happy and mourned his loss as though we had lost a child.  Things were beginning to unravel below the surface but our stubborn plan to sail to Hawaii was still on course. 

The story doesn't have a very happy ending so far as answered dreams are concerned.  We never sailed off to Hawaii.   I never got to sit in a tropical lagoon in Perdida's cockpit watching the sun set.  I was never able to use any of the skills or knowledge I learned in the countless seminars and classes I'd attended.  I never felt the freedom of being out in the ocean, no land in site, standing at the helm with sea air blowing through my hair as I had imagined it with such excitement since as far back I can remember.  I had foolishly assumed this journey was to lead me to my life's purpose.  The pull to the sea was so strong, how could it not be destined?  How could something I'd never felt such joyful anticipation for completely abandon me.  I still don't really understand what happened.  Perdida has been gone now for four years and I still deeply mourn her loss.  Mike left for Hawaii around the same time we sold Perdida.  He sailed her from Catalina with a couple friends to her new owner on the mainland.  Watching her leave the harbor and disappear over the horizon hurt so badly I couldn't stand.  My heart was breaking into a million pieces.  Even while I write this, the pain returns, my eyes are welling up with tears and the computer screen is becoming harder to see.  I always look out into the harbor to see her beautiful, distinctive teal colored hull, wondering if her new owners would take her here for a cruise but I have never seen her.  I suppose I'll never see her or Mike again.

Sometimes I miss Mike deeply.  I love my husband dearly but I know that I will never again share something so life altering, as what Mike and I shared, with anyone else.  The hundreds of photographs we took along our journey are sitting on my hard drive and will probably remain unviewed for the rest of my life.  As I took those pictures I remember thinking "Maybe we can make a documentary about our journey".  Maybe someday my daughter will look at the photos after I'm gone and wonder about them. 

How could I be as close with anyone again?  Mike and I were together for eight years, most of which was spent researching sailboats together, dinners out or at bars spent excitedly talking about nothing but our "plan", going to countless classes and seminars together, buying our dream boat together, going through rough times while learning about our new boat together, packing up our lives and driving across the country to start our new life and so so much more....together.  I learned at Christmas that Mike had gotten married.  It knocked me off my feet, crushing me for about three days.  The same thought kept running through my mind and even quietly sobbed through my tears "Mike....what happened...what happened to us?".   All I could think about was the day we first met.  The excitement that had begun that day and had completely sustained me (while also torturing me) for eight years was completely dead.  No one else on this planet could possibly understand what this felt like but Mike.

 Mike's wedding as well as the onset of Fibromyalgia have completely closed the door on what feels like three quarters (or more) of my self.  I tell my friends and family that I feel like a shell of who I once was but I don't think they really understand.  How could they.  I never could have imagined what this felt like.

My living room window looks out upon the Pacific ocean.  I watch the sea intently every day; calm and blue, then white with wind-driven froth, choppy in a breeze, constantly changing before my eyes.  I can look upon it as a spectator but I cannot participate.  The first affliction that prevented my vision from becoming reality, Panic Disorder, is still there, only lying dormant, waiting until I'm on the sea again.  My second affliction, Fibromyalgia, seems to make the first or any other deterrent seem irrelevant.