July 24, 2008

• dr. house, paging, dr. house.

  
  
  

  
  
  

  I no longer blog much about my health, or lack thereof, but I need to write about it today ... if for no other reason than to get it OUT of my head so that maybe I can move forward with my day.  Or, week.  Or, month.  Year? 

  I am planning to write about type I diabetes soon, covering common misconceptions as well as provide some info about insulin pumps and general life with diabetes.  (For those unaware, both X and I have type I diabetes ... I've had it for 25 years and X for 14, since age two.) 

  So, diabetes and hypothyroidism (16 years) aside, I have lived with chronic pain for ten years.  In the beginning, while seeking a diagnosis, or even just a LOGICAL EXPLANATION for the misery, the following were ruled out:

  • fibromyalgia
  • chronic fatigue syndrome
  • lupus
  • depression
  • any type of arthritis
  • adrenal abnormalities
  • cancer
  • Lyme disease
  • anemia
  • ...

  During my decade-long search for RELIEF from PAIN and EXHAUSTION, I was treated with various narcotic medications (Vicodin, Percocet, morphine, and OxyContin), none of which really helped.  In reality, taking these meds caused more problems because, even though I am a good patient and followed dosing instructions, I not only went through withdrawals on a regular basis (especially while trying to sleep), but also suffered worsening pain brought on by some of these medications. 

  For instance, did you know that Vicodin can make you stiff as a board (neck & back) and tear the hell out of your stomach?  If you take it for a few days or maybe a week, you might be fine.  Longer than that?  Be aware ... you might be fine, but YOU MIGHT BE ENTERING THE BOWELS OF HELL. 

  Not only that, but because I was on these strong narcotic medications, I was constantly being scrutinized and treated like a drug addict.  TWICE, I was taken to a bathroom with taped-up faucets and told to pee in a cup.  Once, an unscrupulous family member with narcotics-dependence issues compromised my medical care and called my doctor to tell her that she thought I was "faking the pain".  (Thanks, Mom.) 

  About five years ago, I said "enough is enough" and demanded to be taken off of all the pain meds.  Frankly, I was in no worse pain off of them than on them.  (A few years later, I asked for the weakest pain medication available.  I was prescribed Darvocet, which I still take today.  After being on it for a year, I demanded again to be put on a smaller dose because I AM ALWAYS TRYING TO PROVE THAT I DON'T WANT THE PAIN MEDS FOR FUN, BUT JUST FOR PAIN!!)

  What was I diagnosed with?  Chronic vitamin D deficiency and, get this ... stiff person syndrome.  Please don't laugh at the second diagnosis.  It's a real disease despite the fact that most doctors have never heard of it, and I had one confuse it with fibromyalgia and try to change my medications.  What is stiff person syndrome?  Here's a fairly good description from the National Institute of Neurological Disorders:

  Stiff person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Abnormal postures, often hunched over and stiffened, are characteristic of the disorder. People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls. SPS affects twice as many women as men. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord. The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood. People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.

  For this condition, I take diazepam (Valium), which MAYBE TAKES THE EDGE OFF.  (Combine a fake-sounding illness with Valium, and ... THEN TRY TO GET PEOPLE TO TAKE YOUR CONDITION SERIOUSLY.  It does NOT happen.  Instead, people think that I am anxiety-ridden and claiming to have a made-up illness.  So NOT cool.) 

  All that aside ... I am in pain more often than not.  I cancel plans more often than not.  I wake up in pain daily.  It takes me hours and hours to be in any sort of shape to do anything or go anywhere EVERY. SINGLE. DAY.  And, people in my life, including family members (but not theother23 or X), DO NOT UNDERSTAND (or refuse to).

  Where is this (the post, the explanation, the rant) all coming from? 

  I am gearing up for another doctor appointment, which I haven't even made yet, to ask for help in relieving my stiffness/pain and to find out why, if I have been debilitated by this for a decade, I can't receive disability or social security.  I can't work.  I have repeatedly tried.  I try to work from home ... but, I'm not dependable.  I might be able to work for a day or two, and then I'm unable to work for two weeks. 

  Also?  Taking care of myself is a FULL-TIME JOB ... I exercise.  I stretch.  I take a myriad of medications and supplements at specific times throughout the day.  I eat immaculately.  I meditate.  I do yoga.  I educate myself.  I log my symptoms and their progression, my digression.  I go to doctor appointments.  I have gotten rid of vices.  I think positively.  I keep hope alive.  I do everything humanly possible to feel better and be accountable for my well being. 

  (Additionally, I want to add that I have spent THOUSANDS AND THOUSANDS of dollars on medications, doctors, and other treatments such as massage therapy, cranio-sacral therapy, acupuncture ... and, the list goes on ... all without any palpable relief from pain/stiffness.)   

  I don't know what else to say about this today, except ... if you have a suggestion about how to get some help, an advocate, considered for disability ... I'm listening.  Just remember, I'm tired.  Too tired to fight the system on my own. 

  • 11:48 am
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