Lemons and Lemonade

Isn't that how it goes - or something along those lines?

For those of you who are unfamiliar with my saga, let me explain. No, there is too much. Let me sum up.

Sorry.

The past nine months have been quite a roller coaster. Vertigo lead to a preliminary diagnosis of multiple sclerosis. After consultation with a specialist, that diagnosis was put on hold until after a second MRI in April. But now it's official.

I have MS.

It still feels a little weird to say. So weird, in fact, that I have not told very many people at all outside my family of course. My boss, one friend at work, and my HR rep, just to make sure I didn't have to do anything special with my insurance. But beyond that, I find myself strangely unwilling to make a formal announcement to any of the people who knew what I was going through in the fall.

Part of this is because, I'm sure, that the natural first reaction will be, "Oh god, I'm so sorry." Yet that's not really what I want and I think perhaps I can't deal with repeated expressions like this, no matter how heartfelt. See, as devastated as I was last fall, I'm not now. Really. Honest to god, I'm okay. When the doc told me, he had a med student shadowing him for the day. She kept looking at me as though she was expecting me to dissolve into hysterics. I think even he was a little surprised at how calm I was.

But see, I've already done the hysterical bit - last fall. I've had nine months to more or less accept this probability. I say probability because somewhere in my heart of hearts, I knew this was not going to turn out to be "nothing." By the time the doc actually got around to saying, "Yes, you have MS," my initial reaction was relief. No more wondering, no more guessing, no more test after test trying to figure it out. This is what your problem is. Here is the course of action we are going to take. The uncertainty of it all was far worse than the reality. I'm the kind of person who can deal with almost anything if I have facts and a plan of action.

Last fall, I had only the shock of the initial diagnosis - How can this be happening to me - I don't have any family history of this! - and then uncertainty. Maybe, maybe not. Wait and watch. It was unnerving. But now, I have the three things The Hubby says are essential to any journey: a map, a plan, and a list.

Don't get me wrong. This is going to suck - big time. It's going to suck because the only approved treatments for MS are self-injections. The medication I am going to take is called Rebif - a three-times-a-week subcutaneous injection. You get little pre-filled syringes via the mail, and there's a handy little auto-injector to administer the dose. Fun wow, right - NOT. Most people experience flu-like symptoms until their bodies adjust. Common (but rare - of course) side effects are depression, increase in liver enzymes, and increase in white blood cell count. Basically, if I feel like slitting my wrists, I turn yellow, or bleed like a stuck pig every time I nick myself, call my doctor. Wonderful.

Best part of all? There is currently no cure for MS. That means, of course, that I get to do this until a) they come up with an oral treatment, b) they find a cure, or c) I die. Whichever comes first. Yippy skippy doo.

Oddly, The Hubby had a harder time adjusting to the news that I did. He was so certain last fall that it would turn out to be nothing. Then I think he had convinced himself that even if it did turn out to be MS, I wouldn't actually need treatment. After all, he has a friend who has had MS for 15 years. He doesn't take anything and firmly believes none of the drugs actually work. I respect that, but I think I'll take a medical professional's advice. Especially since I enjoy walking, being independent, and seeing - all things that could be gone the moment damage occurs to the "right" nerve.

Fortunately, I have a good doctor and a good insurance plan. I got a call the following day from MS Lifelines, an organization that provides support, payment help, and training for MS patients. I received the auto-injector and a travel kit a few days later. By the end of the week, I had a letter saying that the prescription was approved by my insurance carrier. That last is important because believe you me, this shit is expensive. Costs run anywhere from $1,500-$2,000 per dose. Total costs can be as high as $18,000 per year. Me? I'll pay $40 every three months for a prescription co-pay (have I mentioned lately that my employer provides kick-ass health insurance?). That's one worry I don't have to deal with.

So now as I await the call from the nursing agency to arrange training, I'm only left to worry about a few things. For example, used needles are bio hazard waste. How the hell do I get rid of those? I mean, my municipal garbage service is pretty good, but I don't think they take used needles. Of course, as my aunt pointed out there are thousands of diabetics doing insulin injections every day. There has to be a procedure. Duh, why didn't I think of that?

Thinking about diabetics has also prevented me from feeling too sorry for myself. I only have to do this three times a week. Diabetics do this every day. Who's got it easier? In the words of Fox news, we report, you decide.

Then there's the bigger worry. How do I tell my kids and what do I tell them? It's not like they won't know what's going on. They're pretty smart, but still only 8 and 6. My aunt suggested talking to a support group for ideas, but if I'm reluctant to talk to friends, I'm sure not ready to talk to strangers. And how much do they really need to know? I don't want hide things and pretend it's all fine, but I don't think I really have to launch a dissertation on the workings of the central nervous system either. At least the doc was able to address one of my big concerns - MS doesn't appear to be hereditary (you think I would have figured that out on my own, seeing as nobody in my family has ever been diagnosed). He said the chances of one of them developing MS was "extremely low." Good to know.

So there you have it. Ultimately, this will be horribly unfun, and I'm sure some days will suck. But I'll make it - I have to, there just isn't a choice. I've got too much life left to live.

But it's a good thing I like lemonade.