Sunday, February 24, 2013

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.

22 comments:

  1. Good post! You do like the word A$$ don't you? How about mixing it up? "Assit", remember that one? Or the trendy "Asshat" might suit. Just some suggestions, feel free to ignore, of course! MK

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    1. Thanks!

      Yes, "ass" does appear to be a staple in my vocab. Thanks for noting it, asshat! (Just testing new variations, understand.)

      Hee hee!

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  2. I don't know what I would do without the people I've "met" and the info I've gotten online! Things would indeed be much more dire. At the moment, I'm looking forward to another MRI. Oh...the joy! (Yeah...sleep through it... sure...) It is amazing what people say to you, isn't it? If it's not so-and-so who's bedridden, then they cheerfully tell you about another so-and-so who is doing so great! "Why, you wouldn't even know she has M.S!"

    Btw, I love the "braying ass" label on your post. I can just see someone Googling "braying ass"...

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    1. Ditto, Ellen. This community has been an amazing source of comfort and inspiration and laughs. As I said above, I only wish I'd "known" you all sooner. Better late than never!

      People do blurt out some crazy things. I really, REALLY wish they didn't feel compelled to share stories of the people who suffered horribly. I mean, honestly, in what universe is that helpful?! Sigh.

      Get some good rest during your MRI! It's like a spa, almost...or not even remotely.

      p.s. if I wasn't already CrankyPants I'd be Braying Ass for sure.

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  3. I do know what I would do without the people I have met online. I have resisted naming my main saviour, but only just. I would be an even bigger candidate for the funny farm, and would probably have committed murder as well. Mind you, I have made a collection of the silly/well meaning/down right stupid things people have said and one of my favourites has been 'you should get a second opinion - you don't look like you have MS'. Presumably because it isn't tattooed on my forehead - or wasn't the last time I looked.

    I have never had a lumbar puncture - but loathe and detest MRIs. Only the thought that they would have to start again if I scream my lungs out keeps me still. I foolishly agreed to take part in a research project and had to have one a month for a year. I was so glad when that was over. A total oxygen thief that one.
    And yes, there is far too much talent in the blogosphere. And someone has stolen my share. Hiss and spit.

    My own handy hint? Cultivate a sense of humour - the blacker the better. And if it makes other people cringe - so much the better.

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    1. I don't know, EC, perhaps a tattoo is just the thing. On second thought, it no doubt would foster a whole new set of odd looks and questions. [note to self: cancel tattoo appointment immediately]

      Excellent point about keeping still in the MRI. I always seem to feel the urge to sneeze (gives me something to focus on rather than the ever-present urge to pee).

      Your irritatingly large share of talent is not in jeopardy! And I love, love, love your black sense of humor. Cultivating a sense of humor is an excellent tip.

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  4. PS: MS brain at work. The oxygen thieft was the well meaning idiot cited - not the research project.

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  5. I had a lumbar puncture done by a 1st year resident done in a teaching hospital. The first shot was lidocaine, so it didn't hurt. But the next day I had a complete myelogram (his was in 1981, before the MRI, and they took pictures of my entire spine, with and without contrast. I had to lie on a table with my feet stuck into boots to keep me from slipping down as they tilted the table so the dye would flow up my spine to the entrance of my brain.) The whole experience took a little more than four hours. After about three hours the radiologist came in and said "you seem to be doing remarkably well. How are you doing?" I told him that I was "on a beach in Tahiti." Visualization can get you through many things. My headache from hell came a day after I came home from the hospital, two days later, and lasted two or three very long days. Worst headache of my life.

    Not all spinal taps cause that much pain - some of us are more vulnerable than others.

    When I have had my MRIs I was given headphones; they didn't blot out all of the noise, but made it less jarring.

    You are so right about taking a list of questions with you to your appointments. It's likely you will be side-tracked and forget to ask something. Also, having someone with you to take notes is a very good idea.

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    1. Oh, my. That myelogram sounds pretty challenging. 4 hours?! Were you able to get up for a bathroom break (yes, I am obsessed with urinating, since I think about it every time I leave the house: "Will there be a bathroom I can use?" etc., etc.)?

      I love your suggestion about visualization. Will try that during my next MRI. Speaking of MRIs, I got headphones once; the tech even put on my favorite radio station. It was nice (when I could hear it). That never happened again. Rather, I'm given stiff little earplugs to wear. Helps somewhat, but I do miss those headphones. I asked about them and was told...crap, I can't remember what I was told. It was a good reason, I think. Guess I should have taken notes!

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  6. Darn, what a brilliant post, you talented blogger you. Meh.
    Not jealous, honest. Totally succinct and to the point, unlike my own ramblings.
    Your post should be tweeted/sent to your American MS associations, it needs to be read by everyone!!!!!! (what is it with me and exclamation marks?)
    x
    p.s. Wee Squeaky has been noticed by her absence....

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    1. Why thank you, SIF! Natch, you were among those I was thinking of when I mentioned the incredibly funny and talented writers/supportive friends I've met in the blogosphere.

      Not sure I have the nerve to send my list to anyone! (Lifelong fear of rejection, I suppose.) But it's very, very nice of you to say.

      Wee Squeaky is subtle that way. She's anxious to be featured again ("At once!"), but Capt. Nap -- snoring beside me right now -- might get jealous. I need to find a Wee Capt. Nap. Looking forward to the debut of Wee Bubble on your blog...

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    2. Awww, thank you! Or Fank oo, as The Teenager would say (they all love the London accent here).

      Oh, you must tweet your blog. It's a brilliant mini-guide for The Newly Departed (Diagnosed). You can be Beetlejuice.

      Not sure how to insert Wee Bubble into post. Must find a way. Perhaps have Bubble pose with her.

      BTW - I only just got an email re. this post - a day late??? Tut tut. (17.20 my time). Luckily I checked Google Reader earlier...

      Right, must dash. X

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  7. In my life, I have two spinals followed by the awful headache...I do not know if I would recommend a lumbar puncture?? MRIs are noisy but they do not bother me...I like the online MSers showing how different everyone is also

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    1. Ha! I would not recommend a lumbar puncture either, Kim! My neuro pretty much said, "You have to have this test." Blah.

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  8. Once again, an informative and entertaining post! Perhaps you could do another "top five" list of ways to help a friend with MS (large cash gifts excluded!)?

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    1. Thanks, Equutopia! I love your Top 5 idea (large cash gifts INCLUDED, though). :)

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  9. Love your first tip. I always take someone along, preferably someone who has a better memory than I do. I didn't have to have a lumbar puncture. The MRI's said it all. I loathe MRI's btw, and have to be drugged almost to unconsciousness before they slide me into the tube. (severe claustrophobia).
    My online MS friends are my saving grace.

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    1. Karen,

      I *think* they're relatively new, but have you heard of the "open" MRIs? There's one at a facility near me but I was told, alas, I couldn't have mine done in there unless I was severely claustrophobic. (Was tempted to lie but decided I'd probably get in trouble.) Anyway, sounds perfect for you...

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    2. The minimum recommended strength for an MS Protocol MRI is 1.0 Tesla. Open magnets are about 0.45-0.8 Tesla in field strength, so my doc says...sorry no go on the open.

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  10. Love your list! Luckily I've never had the opportunity to endure the "lumbar puncture." (Those are two words that should NEVER be together. It doesn't even sound right!)

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    1. Thanks!!

      And, seriously?? What's up with people not having the lumbar puncture? May I suggest, as a show of solidarity, that you go ahead and do it. All the cool people are...

      Okay, not really (quick, put down the phone!). I am glad you didn't have to do it. Not the most fun I've ever had.

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