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today i had an appointment with my rheumatologist.  some of you know of the diffuse (internal and external) scleroderma i have.  it was rapid onset, took only a year to progress farther than whatever is considered normal with this disease, but i'm lucky.

this is a rant more than anything.  it's also a diary of fear, fear of dying slowly, fear of how much this will cost my family and fear because my 1st cousin died of this same disease two weeks ago...he was my age.

i'm lucky because my husband has a US govt job with full benefits.  don't kid yourselves, we pay for it, but, it's likely much less than you pay.  if mcpalin gets his way not only will we possibly lose this coverage (it's a prior condition) we will also have to pay taxes on the insurance premiums paid by the govt as part of our taxable income.

the insurance company, blue crucifixion/blue crown of thorns, refuses to pay for the only medication that will slow the acid damage to my esophagus and which helps keeps that organ from becoming stiff thereby making swallowing difficult and choking a very real risk.  i almost choked on a prednisone yesterday.  it wouldn't go down and it wouldn't come up, nothing seemed to dislodge it.  finally, it melted.  tasted nasty but that was the least of it.  the worst was that i thought "what if i can't dislodge this and i choke...i'm alone with the labrador retriever and he can't dial the phone".  it likely wasn't as bad as i thought at the time, but, fear and panic when you can't breathe really gets your brain's attention.

somehow they don't balk at the narcotic pain medication or the xanax for anxiety and lunesta which only occasionally works for a sleep aid.  the rest of the medications are for high blood pressure (a result of the action of the disease on the heart).  i have tests next week that are covered so i'm lucky...well they're almost covered, we do have to pay some, but not nearly as much as americans with poorer benefits or none at all.

nexium is the only medication that will ease my esophageal acid reflux and damage.  the over the counter drugs (prilosec ot, zantac, etc.) don't work for more than two hours and no more than two can be taken a day.  the doctors have begged bc/bs and so have i the answer is NO.  if i want it it costs $180.00 for 30 pills.  

i can't work anymore, i drop things, i used to be a forensic scientist, but my hands just let go of what i'm holding with no warning.  my knees also collapse without warning.  my face is losing its expression, my hair is falling out, my body can't regulate its temperature i can't eat foods i used to enjoy, very bland diet now and i'm depressed a lot, the insurance co wants me off the anti-depressants because "they're not to be taken forever".  as a former M.E. i've argued, the doctors have argued, the answer is still NO.  learn to live with it until you die i guess is the philosophy.  for years they paid nothing for my health, now that i'm costing money, i'm definitely expendable.

but i do feel lucky...if i my husband were retired (i am, i had to) we couldn't afford my medications much less his (blood pressure, cholesterol, etc.).  we would have to make choices between food, heat, a/c, gasoline, clothing, home repairs and countless other every day things that are necessary and list what we could pay for this month.  

stem cells are out of the question in the US and while we could afford it, i don't see making my husband's retirement worse by chasing a cure all over the world.

the pulmonary fibrosis is advancing rapidly.  walking across the house is tiring, but, i AM lucky.  at least, for now, i am alive, i'm trying to get a good man into the whitehouse so i have an immediate purpose.  

we must have barack obama or there will be stories that are so much worse, so much more painful and so shameful to the greatest nation in the world.

thank you for listening, we must have healthcare!  we must have Barack Obama.

Originally posted to NO BLOG on Thu Oct 09, 2008 at 06:24 PM PDT.

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