Skip to main content

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.

Your Email has been sent.
You must add at least one tag to this diary before publishing it.

Add keywords that describe this diary. Separate multiple keywords with commas.
Tagging tips - Search For Tags - Browse For Tags


More Tagging tips:

A tag is a way to search for this diary. If someone is searching for "Barack Obama," is this a diary they'd be trying to find?

Use a person's full name, without any title. Senator Obama may become President Obama, and Michelle Obama might run for office.

If your diary covers an election or elected official, use election tags, which are generally the state abbreviation followed by the office. CA-01 is the first district House seat. CA-Sen covers both senate races. NY-GOV covers the New York governor's race.

Tags do not compound: that is, "education reform" is a completely different tag from "education". A tag like "reform" alone is probably not meaningful.

Consider if one or more of these tags fits your diary: Civil Rights, Community, Congress, Culture, Economy, Education, Elections, Energy, Environment, Health Care, International, Labor, Law, Media, Meta, National Security, Science, Transportation, or White House. If your diary is specific to a state, consider adding the state (California, Texas, etc). Keep in mind, though, that there are many wonderful and important diaries that don't fit in any of these tags. Don't worry if yours doesn't.

You can add a private note to this diary when hotlisting it:
Are you sure you want to remove this diary from your hotlist?
Are you sure you want to remove your recommendation? You can only recommend a diary once, so you will not be able to re-recommend it afterwards.
Rescue this diary, and add a note:
Are you sure you want to remove this diary from Rescue?
Choose where to republish this diary. The diary will be added to the queue for that group. Publish it from the queue to make it appear.

You must be a member of a group to use this feature.

Add a quick update to your diary without changing the diary itself:
Are you sure you want to remove this diary?
(The diary will be removed from the site and returned to your drafts for further editing.)
(The diary will be removed.)
Are you sure you want to save these changes to the published diary?

Comment Preferences

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site