5 Things I Wish I'd Known Then

Lots of you* have asked if I have any words of wisdom they can pass on to their best friend, cousin, coworker, etc., who has just been diagnosed with MS. The newly diagnosed are, as I was, probably  worried, angry, confused, and overwhelmed. So I came up with a Top 5 Things I Wish I'd Known Before I Knew I Had MS, As Well As Things I Wish I'd Known Immediately After Being Diagnosed. The title needs a little work, yes, but let's move on.

Now, this list contains tips I wish someone had given me and relates only to my experience, of course. In no way does it speak for everyone or cover every Important Thing. In fact, it covers a few of the less-critical items, since there's a good chance everyone will tell you (or you'll already know) obvious things like: pick a respected neurologist. Oh, and a quick disclaimer: I'm no doctor, so none of the following should be construed as professional (or even necessarily good) advice!

Onward ho:

"Okay, I'm going to read my list now."

1. Bring someone with you to your appointments, if possible. You'll probably get a lot of information, much of which, if you're anything like me, you'll promptly forget. Your companion can help recall important details, as well as prod you if you forget to ask something. If you can't find someone to haul with you, bring a notebook and, ahead of time, list things you want to discuss.

2.  Prepare to be annoyed during your MRI. Technicians have told me they've known patients who fell asleep during an MRI. All I can say to that is: my ass! The MRI, for me, was alternately semi-soothing (bip, bip, bip) and then, suddenly, jarring (baCRANK, baCRANK, baCRANK!!!!) If you have a thoughtful technician, she will tell you, "Ms. CrankyPants, this next one's going to be loud and last for 30 seconds." That's happened to me about twice. Usually, I just have to lie there stiffly and be hugely irritated at the preposterous notion that anyone could actually sleep through this. Oh, yeah: you'll be in there a while. Don't drink lots of liquid beforehand. You'll regret it.

3. Act like a colossal baby about getting a lumbar puncture. My first neurologist, at the very beginning of this whole saga, tried to trick me by saying she wanted me to have a "lumbar puncture." It took me a second or two, but then I burst out with one of my many nervous, near-shouting, bleating laugh-comments: "Oh, that's a spinal tap, isn't it? Can't get anything past me!!!! HAHAHAHA!!!!!" Inside, I was horrified. SPINAL TAP? That was going to hurt like a mother. She kept trying to move on. I kept trying to get her to reassure me that it wasn't, in fact, going to hurt like a mother. Finally, she realized the only way to shut me up was to tell me she'd personally talk to the doctor who was giving me the procedure to be sure he knew what a huge braying ass fragile lamb she was sending his way and would he please be extra gentle? Now, to get this special treatment, you have to be persistent. Don't be afraid of losing your dignity entirely, or repeating, as often as necessary, "Will it hurt? How bad will it hurt? Do I really have to have it?" If you're extra babyish, your neurologist might even prescribe you a little something to take the edge off before the procedure. Mine did, so the loss of dignity was well worth it.

4. Heed the post-lumbar puncture instructions! Before I go any further, allow me to say that my spinal tap wasn't that bad. I believe my neuro did indeed talk to the doctor ahead of time, because he made some "I see we're to take extra good care of you"-type comment, while referring to my chart. That was probably code for the other medical personnel in the room that "We've got a real ass here; let's get this done quickly and easily for all our sakes." Whatever. At that point, I didn't care. Remember: I had already lost my dignity. As I lay facedown on the table, my fragile lamb-like spine pale and exposed, I did some more bleating about not wanting it to hurt. And, it really didn't. It felt more like a firm, persistent pressure. But wait! The entire experience wasn't rainbows and unicorns. I was so buoyed by how darn OKAY I felt afterward, that I went back to work. Bad, bad idea. I had been told to expect a headache; possibly a severe one. To help keep it at bay, it was recommended that I lie down, flat on my back, not bop back into work like Jiminy Cricket. I was sitting in a meeting, congratulating myself for being such a brave little soldier and not only triumphing over the trifling lumbar puncture, but also RETURNING TO WORK when my head began to ache. In a very short period, it was far too painful to remain at work. Or sit up. This erstwhile self-congratulating little soldier somehow managed to drive to my parents' house and lie flat on my back. Every time I moved it hurt. Never before or since has my head felt pain like that, and I've had many a headache. So -- go straight home and lie flat on your back. If you can arrange for a TV on the ceiling, even better. I got quite sick of watching the smoke detector light blink.

5. Find a support network of people in the same boat. The instant you are diagnosed, you'll hear from every other person that their Aunt Mildred had MS and...oh, dear; or how they once knew someone whose cousin died from MS and...oh, dear. In other words, you'll hear from a lot of (mostly) well-meaning people who probably don't know what you're going through, unless you happen to know someone with MS. I knew only one person who had MS. He was a friend of my ex-husband's, and the last time I saw him he was bedridden...oh, dear. So that was what I had to work with when imagining my future. Not so awesome. I also had a coworker, who was a bit of an oaf, go on and on about an old friend who had MS and, guess what?, was bedridden. I finally asked this man to stop telling me the story, because it wasn't even remotely helpful. Back to my point: there are many ways to find support from others with MS. I regret only that it took me as long as it did to find this way: through a blog. You don't have to write your own blog to feel the support and kindness of others. Read a few (or a lot!) that you like and "connect" with. You'll hear so many stories of people living their lives, taking beautiful pictures, making amazing art, writing inspiring words, or, in the case of especially infuriating bloggers, doing all of the above! (I say that only because I'm envious, mind you.)  The blogosphere might not be your bag, baby, but there are many other ways to connect. Here in the U.S., the National MS Society lists local chapters, where you can find details about support groups (Find a Chapter). There also are a wealth of online chat rooms (e.g., National MS Society Online Community). Reach out, in whatever way you feel comfortable. MS can be scary, but you don't have to face it alone. I'm here. Lots of others are, too.

Ms. CrankyPants

*Okay, none of you.