Wednesday, February 15, 2012
Waiting for the test results
The picture to the right is of Jennifer, my daughter, who turns 39 in April.
The photograph was taken last September.
Today she can barely bend her knees.
Jennifer hasn't felt well the past month, and lost so much weight, even her "skinny" clothes no longer fit.
Yesterday she reluctantly visited her doctor, expecting a diagnosis of acute laziness and winter blahs, but he said she lost 12 pounds since her last visit three weeks ago, her thyroid function is zero and her liver is enlarged.
He ordered her to get an ultra sound at the hospital immediately, and warned she may have to be admitted when the results of all the tests come in.
When she first seemed ill a few weeks ago, I blamed the toxicity of medications she takes for rheumatoid arthritis, seizures, low-functioning thyroid, inflammation and anxiety.
Then I remembered my mom, maternal grandmother and grandma's grandfather also suffered from migratory pain and swelling in joints or organs that caused pain for days or weeks, then vanished, only to appear later, some where else.
Mom was diagnosed at various times with rheumatoid arthritis, lupus, polymylitis or Sjogren's disease, different diseases to describe similar symptoms.
Most people thought her mom was a hypochondriac, until her sixties when surgeries revealed and tried to repair the damage some unknown condition had wracked upon her stomach, lungs and heart.
Great-Great-Grandpa Sidney Rowell blamed his problems on the hardships he endured in the Civil War, and was granted a government stipend as a disabled vet.
I wrote to the NARA for his Civil War records and obtained a sixty page report detailing all the letters and medical documentation Sidney needed to get his government disability pension.
Like my daughter, mother, grandmother and great great grandfather, bouts of arthritic pain or pain and swelling in organs comes and goes, with months or even years remission in between series of attacks.
But my great great grandfather suffered permanent, crippling effects from the most severe episodes, causing his elbow and shoulder to be deformed and by the time he was fifty, he could no longer bathe or dress unassisted, according to his records, which included a statement from a neighbor that Sidney was a "good, moral man who never engaged in drinking, smoking or loose behavior."
When Jennifer was young, sometimes she had mobility problems, but steroids probably kept her from suffering permanent damage
When the juvenile rheumatoid arthritis "burned itself out" when she was about 18 years old, I hoped it would never be a problem again.
A blood test showed high levels of rheumatoid factor in a routine test about five months ago, before the pain started up again.
When she was 13, her liver swelled and bulged in reaction to steroid treatment and anti inflammatory medications, so probably her trouble this time is the same as last time, although she hasn't taken steroids in years.
I'm grateful last time she suffered so was 25 years ago.
I'm grateful she proved the doctor wrong, who warned she probably wouldn't survive to adulthood.
When she wanted to get married, I warned that pregnancy could bring on the disease again, and I asked her to promise she wouldn't have a baby, while she demanded her right to a live like anyone else.
I'm grateful she didn't listen to me.