Monday, August 17, 2009

Rockin for the cure

Thank you to all who were able to attend our event last Saturday and help us raise some $$ for a wonderful nonprofit organization in a tough economy. We had a great turnout and hopefully everyone had a great time. All the band members played and sang like true rock stars, my neurologist made a special guest appearance and my voice held up long enough to sing backup on five or six songs and sing lead on one.

Most importantly, we raised around $4,500. Not bad at all.
My voice is still unreliable. Still scratchy and hoarse, still having problems with volume, but I expected as much. I asked more of it than I should have right now. By the way, my neuro has referred me to the Emory Voice Clinic to be evaluated and start voice therapy with their specialists. Not only are they knowledgeable in all kinds of voice disorders, they also work with singers, which I think will be helpful since singers use their voices in different ways than non-singers. As upsetting as the voice issues are (and they are very upsetting), I have also been visited by two new symptoms that are quite puzzling.

Numbness (the "technical term" is paresthesia) is a very, very common MS symptom. Something like 90% of MSer's experience numbness at some point in their journey. When nerves are damaged, as they are in MS, it can result in numbness in your arms, legs, midsection, face or wherever it wants. And the really puzzling thing is that the numbness can occur in varying degrees. It can just be a decreased sensation where your foot feels funny, and you can't exactly feel the ground. Sort of feels like there are a bunch of pillows attached to your feet. Or numbness can mean total numbness, very similar to how it feels when your arm or leg or foot falls asleep. That numb, tingly, pins-and-needles feeling.

By last Sunday morning, I was numb from my hips all the way down through my toes. By that evening, my entire abdomen and most of my back had joined the party, so I was basically numb from the chest down. In addition, I am experiencing something called Lhermitte's Sign. Something akin to sticking your finger in an electrical outlet, I would imagine. It isn't painful, per se, just extremely uncomfortable when it happens. And it is happening every time I bend my neck forward even the slightest bit.

To say that all this feels bizarre is quite the understatement. I talked to my nurses twice last week and we are "watching-and-waiting" to see if this is a pseudo-exacerbation (i.e. brought on by an infection, stress, fatigue) rather than a true relapse. To be on the safe side, I booked an appointment with the nurse practitioner.

The whole thing terrifies me. I don't know that I can emotionally handle another relapse right now. I really, really need to make it longer than four months without going into Relapse-Land. I am exhausted with the physical and emotional turmoil of being an "unstable" MSer. It is frustrating to feel that you have so little control, except for the option of cutting out all fun activities and avoiding all stress (good or bad) in hopes of staying "stable."

So in theory, I could stop participating in anything that might be stressful to my body, including singing with my band, helping my stepdad/stepsister with their shows, volunteering for and raising $$ for the NMSS, going out to dinner with friends, going to school, doing anything that involves being outside in the summer...the list could go on. Unfortunately, that's just not my style and I have been fighting it tooth and nail for two-plus years. For a former social butterfly whose social/work/volunteer/event calendar was always maxed out, it is devastating to feel I have to say no to so many things I love in order to "maintain" my health. Which is comical, because what is it I am trying to maintain? Maintain this instability? Regardless of what I do/don't do I seem to be facing relapses every three to four months.

If I hadn't sung a few songs with my band on Saturday, would I be able to feel my body right now? Or would it have happened anyway? I am sorry if I sound angry, but it's mostly because I AM angry! I just had a clean MRI. Shouldn't that buy me at least six months of no relapses and no crazy things like my entire body going numb?? I am really trying not to let it all get me down, but it's difficult sometimes. Like many things in life, there is no black and white with MS. It's a lot of gray and you just gotta make the best decisions you can and hope for the best.

To look on the bright side:
1) I can't feel my injection needles pierce my skin right now, which is very nice.
2) The anti-acid reflux diet has gotten me down to the same size I was my senior year in high school. So even though I hate this stupid GERD diet, it got me back into my skinny jeans...and then back out of my skinny jeans because they got too big.
3) Hmm. I don't have a 3 yet. I will keep working on one...

Until I can get more info, I am trying to lay low, gearing up for classes to start back on the 24th. I am trying to avoid the heat and I am being super careful when I walk because you never realize how much you rely on feeling the ground until you can't feel it at all.

And since I can't feel much of anything below my chest, several times a day I have to look down to make sure I am actually wearing pants. I mean, I haven't yet forgotten to put on pants, but when you can't actually feel the pants on your body, it's always best to double-check these things. :-) C'mon. That was funny, right?
Even on really bad days, ya gotta still find the humor in things, ya know?

PS- As this article went to print, the common relapse-partner-in-crime Nerve Pain has arrived on the scene and the author has just returned from her appt at Shepherd where all parties have agreed that 3 days of IV Solu-Medrol would be the wisest choice at this time. Infusion should begin in the next 2 days, followed by 3 days of sleeplessness, irritability and serious carb craving. This will then be followed by 3-4 days of weakness, more irritability, continued carb cravings and a small pity party. Happy thoughts, smiles, sympathy and carb-related foods are all welcome at any time. :-)


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