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.

 

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? 

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?

Things in Life Go on and on

My mom is visiting from NJ for our daughter's first birthday which is tomorrow.  Two friends of mine had planned to come yesterday to celebrate but one friend was sick and the other (who gets very seasick and is practically phobic of boats) was afraid of the predicted rough boat ride across the channel.  I was really hurt at first, thinking she (the former) was making excuses when my she called to say she wouldn't be coming, in fact we got into a big argument about it.  I don't have many friends on the island anymore and my family is on the other side of the country.  My husbands family couldn't attend due to work schedules.  So it would just be me, my mom and my husband.  We ordered a six inch cake, mostly as a photo prop more than anything else.

Yesterday afternoon, after my husband returned from his fishing charter, he very unemotionally explained that his mother had been taken to the hospital with shortness of breath, and that he was going to take the next boat to the mainland.  We've known for some time that she was ill but doctors hadn't quite pinned it down yet as a lung malignancy, CHF or COPD.  We were hoping some tests she recently had would give some answers.  My husband's father died when he was eighteen.  I'm glad his two half brothers are there with him.  He called not too long ago with sad news.  Apparently his mom has several serious chronic conditions that are inoperable, including emphysema, COPD and a leak in one of her heart valves.  I guess the doctor told them that she didn't have much time and that she was too weak to survive any type of heart surgery.  I wish I could be there with him.  He's taking it really hard and I just want to comfort him.

My husband's mother along with his half brother and his wife were just here visiting us two weeks ago.  I didn't really notice anything different about his mom but my husband and his brother thought she seemed short of breath and noticed that she had lost a lot of weight (which she could not afford to loose).  I'm so glad now that she was here to see her grand-daughter and spend time with her.  I had no idea at the time, that it may be the last time my daughter would ever see her grandma and probably the last time my mother-in-law would come to Catalina Island, a place she has loved dearly since her teen years.  When they left and we hugged, I didn't know it may have been the last time.

My husband is coming home tomorrow morning but probably leaving again the next day.  He fears his mom may only live a few days more.  I feel so selfish wanting my husband to be here for our daughter's first birthday but it's important to me for some reason especially since he wasn't there at her birth.  I know he should be with his mom though.  There will be lots more birthday's with our daughter (I certainly hope) but this may be the last chance he has to spend with his mom.  I know he's coming home for me.  Maybe I should call and tell him not to come home, that he should stay with his mom.  I'm so torn, I don't know what to do.  If he doesn't come, it'll only be me, my mom and my daughter, pretty much a non-event for her very first birthday and pathetic pictures for the family album, but really not the most important thing.  I'm so confused and sad.  I wish I could hug my husband right now.  The events of this day have seemed to magnify the the inevitabilities of life and death.  The beginning of one life and the ending of another.

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.