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 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.