Thursday, March 7, 2013

Wishes Hopes and Dreams

   Wishes Hopes and Dreams are all it seems I have these days.  Wishing for warmer days, hoping for a more peaceful future for humanity and dreaming of what I may still accomplish in the years ahead.
I'm more a dreamer than a doer these days, that's alright though because some of my dreams have become reality and I'm really proud of the work I did to make some small things happen.

  I have a lifetime of a "Bucket List" that keeps changing, somethings are added and some things are taken away.  My time in the amazon forest is off the list but replaced with creating a legacy, or at least great memories for my grand children.  

   Living with chronic illness is no cake walk that's for sure and living with this particular disease seems beyond unbelievable because of what we have to go through just to get doctors to listen to the laundry list of symptoms and come out of that visit with yet another list of antidepressants, anti-anxiety meds. and being told that there is nothing that can be done for those everyday aches and pains.
   I cannot tell you the number of times I've left the doctors office in tears and ready to commit myself to a psychiatric care facility.  I felt foolish, doubting myself and wondering if it's at all possible to be a hypochondriac and not know it.  Not a single doctor in 30 years ever asked or thought to ask what my life style was. Had they asked, just maybe one of them would have looked at the potential of vector borne illnesses. 

 I had been given Quinine for my severe muscle cramps and spasms. I had been given the maximum dose that could be taken of Viaox and when that was taken off the market it was then Celebrex for the horrible joint pains.  Tramadol for my constant headaches that turned into migraines regularly and the joint pains.  Got Maxalt added to the list. Prednizone for inflammation in my back and added flexeril for spasms. I was taking drugs to counteract the side effects of other drugs. Added to the symptom list was fatigue not sleepiness or just tired, I mean bone aching exhausted where by about 1 pm at work I just couldn't move anymore and had to find excuses to sit in the office to do paperwork.  Memory lapses and lost words and confusion became a huge problem.  My knees and elbows were giving out and I had surgery to repair tendons in my rt elbow, still not working well.  

 I've had gallbladder scans, chest x-rays,liver scans, thyroid scans, CT scan of the brain, EEG, EKG, Echo cardiogram, sinus x-rays, stress tests and ultra sounds from neck to ankles.  I've had blood work for everything under the sun (at least that's what my doctor said at the time). Chronic sinus infections led to more steroids.  

   When all of those drugs didn't work and all of those tests came back normal, with the exception of a faulty heart valve and growth on my thyroid (thyroid tests are still normal) and getting progressively  worse my doctor hit that proverbial wall and referred me to mental health.  I accepted my fate and went to see the psychologist to see what sort of mental illness I had that is causing me such misery.  I let loose in the visit, crying through the whole story of events that brought me there. She had me describe in detail my symptoms and events surrounding some of my worst flares.  By the end of that hour, she told me that for sure I had something physical going on and that the doctors need to keep trying to find the cause.  What a weird feeling at the end of that visit..........I'm not crazy Whoo hoo! BUT I'm still in pain and have no idea what's wrong with me.  My doctor was at the end of what he could look for and I just gave in to the idea that I better just live until I die.  I was at a point of being very fed up with being told I'm fine.

   Later in time I ended up in New Jersey to help my daughter and her husband with the kids until they got out of the military.  My daughter had been sick for awhile with a fever and fatigue and headaches among some other symptoms.  Most of which sounded very much like what I had been going through.  She had what the doctors thought was an infected bug bite on her toe months earlier.  In her research to figure out what the cause could be (her doctors had no idea what was causing her symptoms) she stumbled upon tick borne illnesses. This made lots of sense in her case because the military base she worked on was drowning in ticks (figure of speech) almost daily there were people pulling ticks off of them selves or finding them crawling up their legs.  She asked to be tested and sure enough she had lyme disease and Bartonella.
Long story short here because her fight was incredibly long eventually involving a congress woman from California trying to help her get treated. She lost that 3 year battle and someday I'll attempt to tell you the whole story.

 I found an internal medicine doctor that would test me.  There was no hesitation at all by the doctor because lyme disease is commonly found in this area of NJ.  My results came back and sure enough Lyme disease and Ehrlichosis and majorly high numbers on the EBV test (explains some of the fatigue).

   I was able to get treatments for about 6 months and had some improvements but with the loss of medical insurance I wasn't able to continue.  It's been nearly 3 years with only using some herbal remedies once in a while to keep symptoms at bay but I've slid back to where I was to begin with. 

   So here I am doing what I can sitting here at the computer with a new or evolving set of wishes, hopes and dreams.  My story and my daughters story is being repeated thousands of times. Victims with the exact or nearly the same experiences and stories to tell. So many of them house bound unable to get out of bed or confined to wheel chairs. I thank god for the advent of social networking and the internet as this enables people to be able to reach out to others.  

   My wishes hopes and dreams for the moment. I wish the attacks on these patients, that have suffered for so long, comes to an end.  I hope that the Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) find a way to get together for the one goal of eradicating this disease or at the very least come to a middle ground some where that better treatment options or more options are allowed to the patients.  
I dream of what it would be like to have my life back and see all those that are so very ill able to take a walk outside in the sunshine or go for a ride on horseback or grab that board one more time and surf that wave.

   Egos in the IDSA need to be set aside.   These patients you scoff at are real human beings with real pain and NO answers.  None of us need to read your garbage in the medical journals stating such opinions of us being 'anti-science' or gullible to the opinion of our doctors.  

  We deserve the right to dictate what treatments we will accept.  Informed consent laws are in place in some states, that should be uniform across the board.  We deserve to be treated as individuals, recognizing the different diseases and different immune systems we all have.  The IDSA's "cookie cutter" treatment guidelines do not take into account the varying degrees of illness we have.

   I wish, hope, dream and pray that this May 2013 IS when we finally get heard and that they realize this is NOT mass hysteria, a contagious somatic disorder or us being conned by our doctors.  To all my friends and patients out there, hang in there and be strong and don't let the opinion of some of those egos get you down.

Wishing you all Happiness and good health,