Tomorrow I Will Be 50

And today is Easter. Here I am, thinking about various diverse yet connected topics...about the original story, about death and the return of life.

About today, 2000 years after the events of Easter. A date of celebration, after a date of sadness. Highly likely on the wrong dates, both; and full of pagan symbolism and rituals too. I don't mind that. It's all human to me.

About kids growing up to be adults. I was pretty sure, for a long time, that I wouldn't make to 50. And if I did? That I wouldn't want to keep on going.

Was that the conceit of youth, not wanting to become "old and ugly?" Sure. Partly.

But only partly. Because I knew, as a small child, that my health wasn't right, and would probably never be resolved.

What I didn't know was whether I would have the desire to keep on going through the aftermath.

I do. My will to live is actually far greater now than when I was a child, and when I was a young woman. From very early on the opposing forces of self-destructiveness and survival did battle within me. I'm still here today because the good side won.

I think about that when I see little children with health problems. Fighting strong, so often; yet when some of them reach the losing end of a long-drawn mortal battle, a remarkable maturity and acceptance of their fate often glows out from them. Children of only a few years can give us uncanny examples of courage and love and grace.

I think about that when I see people with long life spans already under their belts, with health problems, and still fighting strong. Still loving life, and loving those around them, and not at all ready to let it go. Not yet. Not time.

That odd sense of a disturbance in the force is still troubling me some. I'm starting to feel, though, that it's turning around. No reason we can't fight back, huh? No reason at all.

So I want to tell you about two particular cases, okay?

First: My blogdad Desert Cat has a very fine set of parents. His father, DadCat, has arthritis and needs strong pain control, just like me. We both get around on scooters too. I don't know DadCat well, he doesn't blog, but I sure do like him. He's pretty bold with his leonine son in comments sometimes, and cracks me up when he's at it.

He's a certified genius who was treated as mentally inferior, below average no less, until early middle age. Then he took a Mensa IQ test.

Suddenly everything became clear. Those early *educators* thought he was *slow* not because he couldn't understand them - but because they didn't have the mental prowess to understand him. ah HA! Ain't life grand?

Momcat has an interesting background of her own. She went through a very hard ordeal in Europe in WWII. She survived and wrote a book about it. She's safe here, and she loves DadCat and she worries about him.

Especially now. He's got a raging case of anemia for some reason the docs aren't sure of yet. But the reasons could be very bad ones. Bone marrow cancer. Leukemia.

Asking this of you - well, I don't do it very often. But could you all send out some prayers, positive energies, good thoughts - however you do those things - could you send them out to DadCat and Momcat and Desert Cat? I love my blogdad. I don't want any of them to suffer.

I know suffering is part of life. But so is comforting people, too. And these particular people are ones that I'm quite sure will feel the power of your messages more than most others would.

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The second topic has to do with arthritis. There's a lot of personal backstory about this one, so I'll be way more long-winded.

I was born in the Chicago area, but moved to California as a little baby six months old. Then when I was seven years old, we moved back to the Chicago suburbs. I hated it. All three of us kids did. Although, at this point, I do believe it's high time we forgave my mom. (Her idea, see. She was homesick.)

Mom's paid the price many times over: not only has she patiently endured her childish children's endless complaints, she has Seasonal Affective Disorder (SAD), as many of you are feeling this winter. I have it too, I've no doubt. I went into a clinical depression that first winter in Chicagoland. Snow? Ice? PLAY IN IT?!? Uh, no.

Soon after my eighth birthday I got my first attack of juvenile rheumatoid arthritis (JRA). Back then, the tests were not so very conclusive. Clearly, my big toe joint - although not injured - was red, swollen, hot, and painful. Exactly like RA looks and behaves. It walked like a duck and talked like a duck...But the blood tests (RA factor and sed rate, if I remember right) were negative. False negatives were known to be common, said to be as much as 50% of test results, but still...

So to add to the misery of the JRA itself, I was treated with alternating heavy doses of sympathy, or of mean-spirited, scornful, derisive disbelief, by health care workers, teachers and other school employees, classmates, and family alike. Kinda schizoid, and distinctly unpleasant and alone-making.

I still have RA now, of course, and it's absolutely conclusive, positive test results and all. Too late for the proof I needed back then, but what the hey. I made it through. My current RA doc still calls it *JRA.* Now that I'm almost 50, I've stopped asking him why. I just let myself enjoy the illusion for a second or two. '-)

Rheumatoid arthritis runs in my family on both sides, one way or another. My mother's...aunt, I think?, her own mother's relative - was one of the folks treated with beesting therapy, an old time medical fad that actually probably had some immunological truth to it. Another relative, on her father's side, was terribly crippled by it in middle age, and it eventually killed her.

My father's father almost died from RA in 1958, the year I was born. Since he was dying anyway, they all decided to risk treating him with a brand new medicine: steroids. Cortisone. They saved his life. We have an old home movie of him throwing away his cane with glee.

Either the RA or the steroids partially blinded him. They didn't know, back then, that you have to withdraw from the steroids slowly. If you don't, you can really injure that patient.

His peripheral vision was shot. He still drove, though. ;-)

As a kid I was treated with aspirin therapy, which was about all they knew to do for moderate JRA back then. I took a lot of aspirin, around 13-18 per day, up to my early 20's. Then, after the anaphylaxis episode, I went to Northwestern's allergy clinic. They also had an RA clinic, and the allergy clinic docs sent me there as well.

Both, you see, are immune system disorders. One I call *Immune Gone Wrong:* the immune system attacks harmless pollen and food, so forth.

The other, RA, is auto-immune: one's immune system turns against the very organism it's supposed to protect. It sees a joint and says *That's...that's...it must be...PNEUMONIA!!!* and brings out the big guns and attacks, with great force, your pneum - middle knuckle of your right forefinger. Gee, thanks.

At the Northwestern RA clinic in 1980, I was treated with some of the earliest nsaids. I think this was all part of the process called *clinical trials.* Unfortunately, one discovery was that nsaids can really eat your GI tract. One morning I woke up throwing up blood.

But all told, that was the worst of my JRA, from age eight until adulthood. Pain? Yes indeed. Emotional agony? You bet. The blood thing? Icky and scary, but over pretty quick. I could walk, see? I wasn't blinded. Not in a wheelchair either. The aspirin didn't provoke the hoped-for remission, but it actually did help the pain.

Now picture this: Not a case of *moderate* RA, but a serious one.

A child not of 8 years old, but 2.

At the age of two, a child that can't walk. Not just because they're already crippled by arthritis - but because they were crippled before they were old enough to even learn how to walk.

So tiny that most any treatment is quite unsafe for them.

Some of those kids become blind. Some stay in wheelchairs forever. Some die very young.

That's what a serious case of JRA does to a child.

One of my old RA docs treated a lot of kids. She had their pix up in her waiting room. They were hard to look at, sitting there waiting for our appointments. Eventually they were moved to a back section of her office suite.

I never asked why, but I always wondered if one of her patients talked to her about the pix. The doc was proud of her work with the kids, and rightfully so. Yet sitting there waiting, it was hard, sometimes, not to feel survivor guilt. We made it, we were adults; most of my fellow patients are elderly. We're not little kids. It troubled me then to think of small children suffering so much, and it still troubles me today.

To my mind, my long-ago great- or great-great-aunt, and her fellow patients, contributed to our understanding of RA immunology. Whether or not the beesting venom did it, she probably was a genuine RA sufferer, and got a genuine positive outcome. What happened to her and others treated with beestings intrigued scientists and laypeople on both sides of the issue. It got them thinking about why that might actually work - or why not.

My grandfather lived through his RA, and his experiences contributed to what we now know about treating RA with steroids. His illness and his positive outcome, and the steroid side effects he suffered, added to the store of knowledge that went on to save many more lives, and treat many more people with a wide variety of immune system disorders.

I'm now taking steroids myself. It's the one medicine, above all, that got me out of bed and functioning again. Do I wish he were here so I could tell him? Oh, you have no idea how much. And his wife, my wonderful grandmother Helen who I loved so much - if I'd taken the Prednisone earlier I could have spent so much more quality time with her before she died. I regret that far more than the steroid side effects I acquired.

Me, I realized just yesterday that my own bout with nsaids added to that store of medical knowledge too. I suddenly didn't mind the puking blood thing. Not a bit! This happened only one day ago, folks. I did the blood thing some 28 years ago. What a comfort to suddenly feel this way today.

So I'm claiming a long family and personal history with RA and JRA here. And I'm bothering you all with this for one reason: I want the research into all forms of RA to continue.

Of the many different things wrong with my health, I haven't quite made peace, yet, with that particular illness. I realize this is not logical - of course I do - but JRA can still fill me with helpless rage. Mine was moderate, okay? Moderate alone was miserable.

I think of those kids with the serious cases and I want it to stop.

So if you're able to, do me this favor: Head over to LL's and put $10 in the kitty for her. She's raising up money for the Arthritis Foundation.

LL has a close personal connection to JRA through a friend. That friend has a daughter, a girl who's now in her teens.

That girl was one of those little babies who got JRA when she was only 2 years old. She's doing better now, she has a life.

The Arthritis Foundation helps fund the research behind the medicine that gave that child's function back to her. If you have $10 to spare, drop it on in for me, okay?

Here's the short *How-To* version:

So go here, and along the right side of the page, you will see a link for “Team LL.” That would be ME. Click that link and you can donate. The minimum donation is $10.

If you'd rather do a PayPal donation, send LL an email, and she'll send you the easy link for that.

Thanks, folks.
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