Monday, June 05, 2006

2 Want to Comment?

Falling for Lupus

Harry is honoring me today, using this article in his weekly column for SCOOP, USA. That's a small Philly weekly free paper; he's been writing for them for twenty-five years and hasn't missed a week. Well, in a way he has because when he wants a break he asks me to write. Until recently, I wrote mostly about Lupus feeling I was doing a service. My case is relatively rare and difficult to diagnose. Because of that, I needed to do most of the research myself and go through a lot of doctors before I was finally given respect and a diagnosis. So I shared my knowledge with Harry's readers because most people don't want to spend hours in libraries and on the computer wading through medical journals.
For the last few years especially this last year after I retired, I've felt better than ever. Stress impacts severely on all autoimmune diseases and that includes Lupus; Diabetes; Multiple Sclerosis; and "events" like heart attacks and strokes. Once I recovered from my last horrible flare, I didn't really care what mistakes the doctors wrote as long as I felt okay. But today I fell again. Before I applied to retire, my balance had gotten so bad I was using a cane, (which was like a third leg and just as annoying,) and going for physical therapy. I couldn't afford to keep going to P.T. so I continued to do at least two of the exercises at home. I don't follow through or exercise either so some of this falling is my own fault.
Once my balance is compromised, and just walking through narrow spaces will do it, I often fall. Not every time, but too often to feel safe. Today I fell walking into my studio. I took with me the whole implement side of my drawing desk and most everything on my little extra table. I haven't picked anything up yet and I must because my cats like to eat my sable brushes. Still, it's my second fall in two months. My arm now has a long red cut from above my elbow to my wrist. I can kid and say it accessorizes the giant black and blue mark and lump on the backside of my arm and the few on my upper arm. I'm really a mass of bruises. Somehow my arms swing into things and I also miss the item I'm aiming for. Uh oh! There goes another spot. My whole body is polka-dotted.
I didn't know if the ease of bruises would cut down as I decreased my steroids but I hoped it would. Instead, it's stayed the same but my funny head stuff increased. People with Neuropsych Lupus would probably understand. We get migraines and strange head feelings of many varieties. It's just a shame it's not just ice cream. That would be nice except of course my weight is horrible so ice cream wouldn't be an improvement. Lupus is just no fun and neither is the frailty that comes with any disease or just aging. It's no joke that illness and aging are only for the brave.

2 Comments:

Blogger cara winsor hehir said...

i was aware that you have lupus from your website. i was recently tested for some things, lupus being one, but was given a clean bill of health, after x-ray and blood tests galore, i thought they were going to bring out the leeches next!
i suffer from miagraines,2 a month usually. and have elevated esr (can remember what that means but apparently people with lupus have it - something to do with inflamation somewhere in the body).
not a lot to go on... i choose to believe that i am healthy, just suffering from general aches and pains from life and that it will not progress into something more serious.
take care of your self, maybe i'll take a photo of the scar that runs from my elbow to my wrist so you won't feel to lonely!!

7:57 AM  
Blogger painterjayne said...

The docs may have tested you for --crap, I can't remember--there's one test that if it's positive, it's one only lupus people have.
I pulled out my Lupus notebook--notes I kept from August 97 till now. I used to just keep all my doctor's notes and test results but at that point I started a notebook of symptoms and medications I had/took and what happened. I can't recommend doing that higher. It's really been a help. Since I can't find the lists of tests, just put Lupus blood tests in Google and they'll come up. The big headache one for me was the Spect test. It's a machine that shows the blood/oxygen flow to your brain. Mine was impaired and no other test showed it. Maybe the Pet scan, but my doc at that time discounted it. (They discount a lot including your level of pain, unless you're critical.)Don't let 'em. I persisted and changed docs when a doc refused to treat me as an intelligent being. My terrific GP still checks with my husband how I am but I can live with that.
How did you, or why do you, have a big scar on your arm? Did you get carpal tunnel surgery? That's another common thing with Lupus because of the connective tissue. I have it too, if that's it. I wear wrist do-dads every night. (My bed has all kinds of therapeutic pillows for me.)Well, it's back to packing. I just looked at my bedroom and quickly became overwhelmed.
Best Wishes,
Jaynee

3:10 PM  

2 Comments:

i was aware that you have lupus from your website. i was recently tested for some things, lupus being one, but was given a clean bill of health, after x-ray and blood tests galore, i thought they were going to bring out the leeches next!
i suffer from miagraines,2 a month usually. and have elevated esr (can remember what that means but apparently people with lupus have it - something to do with inflamation somewhere in the body).
not a lot to go on... i choose to believe that i am healthy, just suffering from general aches and pains from life and that it will not progress into something more serious.
take care of your self, maybe i'll take a photo of the scar that runs from my elbow to my wrist so you won't feel to lonely!!

By Blogger cara winsor hehir, at 7:57 AM  

The docs may have tested you for --crap, I can't remember--there's one test that if it's positive, it's one only lupus people have.
I pulled out my Lupus notebook--notes I kept from August 97 till now. I used to just keep all my doctor's notes and test results but at that point I started a notebook of symptoms and medications I had/took and what happened. I can't recommend doing that higher. It's really been a help. Since I can't find the lists of tests, just put Lupus blood tests in Google and they'll come up. The big headache one for me was the Spect test. It's a machine that shows the blood/oxygen flow to your brain. Mine was impaired and no other test showed it. Maybe the Pet scan, but my doc at that time discounted it. (They discount a lot including your level of pain, unless you're critical.)Don't let 'em. I persisted and changed docs when a doc refused to treat me as an intelligent being. My terrific GP still checks with my husband how I am but I can live with that.
How did you, or why do you, have a big scar on your arm? Did you get carpal tunnel surgery? That's another common thing with Lupus because of the connective tissue. I have it too, if that's it. I wear wrist do-dads every night. (My bed has all kinds of therapeutic pillows for me.)Well, it's back to packing. I just looked at my bedroom and quickly became overwhelmed.
Best Wishes,
Jaynee

By Blogger painterjayne, at 3:10 PM  

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