July 9th, 2007


the test results and info

The diagnosis is "spondyloarthropathy." It is a type of arthritis/autoimmune disease which is related to ankylosing spondylitis and inflammatory bowel disease.

This article by a rheumatologist discusses the characteristics, problems with misinformation and reasons for misdiagnosis of women with these condition. It won't surprise you that one reason is that women were viewed as "anxious and depressed." Wouldn't you be anxious and depressed if you were hurting all the time and no one did anything about it?

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Some posts on the AS board indicate that spondyloarthropathy is often an initial diagnosis made until the diagnosis can be clarified. I need to ask questions about what kinds of symptoms I need to monitor. I am reasonably observant if I know that something is important; but I have been through so many unproductive doctor trips (e.g. "your severe respiratory symptoms are just a virus, your eye pain is just allergies/sinus trouble, your seizures are stress-related) that I sometimes assume that I'm "just not feeling well" and it will pass. The unfortunate consequence of this practice is that I learn to tune out my symptoms as unimportant once I have observed them and determined that the doctor wouldn't think them worth mentioning.

I start Sulfasalazine in the morning: three days on 500 mg, seven on 500 mg twice a day, seven days on 1500 mg/day, and then up to 2000 mg/day. I have to get blood tests done to make sure I'm doing ok on it. My only disappointment at this time is that I'm having to drag medical lingo out of my doctor's office. I don't think they know me well enough to know that I like to know the specifics. I'm not sure if it's the "little girl phenomenon" or just the way they deal with all of their patients. I don't want, "We need you to have some bloodwork done." I wnt, "We need you to have a CBC done because blah blah blah."

  • Current Music
    Loretta wandering around

paper dolls

When I was a little girl, I played with paper dolls. I haven't seen kids playing with these in years, but they were fun. They're probably fun to make, too, if you can actually see to decorate them.

Making Friends
Paper dolls you can print out.

History of Paper Dolls
This is for the adult paper doll enthusiast but might provide some interesting talking points if you introduce paper dolls to a child.

There are tons of links to sort through... I'll have to find a way to narrow my search. One of the pages that looks very interesting crashed my computer twice. I can't do this stuff with C until I get some suitable cardstock...

  • Current Music
    various house noises

one problem with meds

Just one problem...

From the Mayo Clinic site:

Tell your doctor if you have ever had any unusual or allergic reaction to any of the sulfa medicines, furosemide (e.g., Lasix) or thiazide diuretics (water pills), oral antidiabetics (diabetes medicine you take by mouth), glaucoma medicine you take by mouth (for example, acetazolamide [e.g., Diamox], dichlorphenamide [e.g., Daranide], methazolamide [e.g., Neptazane]), or salicylates (for example, aspirin). Also tell your health care professional if you are allergic to any other substances, such as foods, preservatives, or dyes.

However, I looked up Methotrexate... The side effects are frightening. Maybe this is a case of choosing the lesser of two evils. My rheumatologist is quite aware of the salicylate problem--she is the one who told me not to take aspirin or NSAIDs. If I call in the morning, I know what will happen. I can try Methotrexate or live with the pain--I cannot stay on Prednisone indefinitely. I probably need to give this a try and hope for the best. If it doesn't work, then we will go on to something else. Perhaps not all meds in the same category will affect me... I can hope, anyway. If you pray, now would be a good time to pray that I can tolerate this medication.

  • Current Music
    Inca meowing