This whole business with the MS originated in my lower right leg. As far as I know, anyway. The numbness mostly affects my mid-to-outer shin and wraps around to stop in the middle of my calf. And sometimes it spreads down past my ankle and onto the top of my foot. Tapping the skin there just feels like a dull thudding.
Sometimes, just to be extra interesting, the tissue near the base of my right toes appears swollen, as if my foot is retaining water. It doesn’t hurt. It’s just annoying. No one can tell me why it does that.
I’ve come to accept these symptoms as the norm. Even on my good days, my right leg is partially numb. It is what it is.
But lately, the leg has been bothering me more. I’ve been feeling a weird sharp, prickly sensation just to the right of the back of my knee (I wish I knew the names for all the body’s tiny parts) where the tendons connect lower thigh to upper calf. It’s a really irritating sensation, one that’s caused me to favor the leg more–I put my weight into my left leg, and even balance on one foot to take pressure off of the right foot, which has been feeling more like I’m standing on a block of wood than a foot. When it’s like this, I feel uneven, like my right leg is longer than my left.
And I’ve also felt these random shots of heat, like something thick and warm oozing down my leg. This sensation mostly spreads down the outside of my shin, over my ankle and onto the top of my foot, but sometimes it will start at the back of my thigh. I might trigger this when I put pressure on my foot, but otherwise, it just happens. Like most things with MS, it’s unpredictable.
Then there’s today, where I felt something vibrating like the beating wings of a buzzing insect trapped under the skin just above my ankle. I couldn’t see any twitching and when I touched my fingers to that spot, I didn’t feel anything different. I massaged the muscle and was only reminded of how numb that part of my body is.
I don’t mean for this to sound like a complaint. I’m not terribly concerned about these sensations–not yet, anyway. I just thought I should note these changes somewhere. So I’ll just wait and see if it gets worse, I guess. Until then, I’ll keep doing yoga, walking as much as possible, and in the spring, I’ll start riding my bike again. Party on.
And because this blog post’s title is a nod to INXS, who I loved in the late ’80s and early ’90s, here’s a video of them performing “New Sensation” at the 1988 MTV Music Awards, with an intro by Arsenio Hall (where is he now?):
Wow. That was a little embarrassing. I can’t imagine that I’d like this music now if I hadn’t first liked it in 8th grade. And check out the shoulderpads and ruffles on Michael Hutchence (may he rest in peace).
So I heard something crazy last week at my monthly MS support group. We were talking about drugs and why they’re so #*&^@! expensive. As usually happens at my support group, I learned things that I should probably already know.
For instance: did you know that Rebif and Avonex, the latter of which I currently inject into my thigh once a week (and as I write this, this week’s shot is waiting for me on my coffee table) contains cells from CHINESE HAMSTER OVARIES? Really:
AVONEX® (Interferon beta-1a) is a 166 amino acidglycoprotein with a predicted molecular weight of approximately 22,500 daltons. It is produced by recombinant DNA technology using genetically engineered Chinese Hamster Ovary cells into which the human interferon beta gene has been introduced. The amino acid sequence of AVONEX® is identical to that of natural human interferon beta.
I hadn’t actually thought about how the drug is made, just how it’s supposed to work. I inject it and cross my fingers.
Where do they come up with this stuff? How did someone discover that by using cells from hamster ovaries–sorry–Chinese hamster ovaries, they could make a drug that might slow the progression of Multiple Sclerosis? And why do the hamsters have to be Chinese? I wonder how long it took someone to develop this. Crazy.
And speaking of crazy, a friend whose mom has MS was asking me some general questions about my health last night and wanted to know if I’d heard of people treating MS with hookworms. Hook. Worms. Yeah. These guys:
Anyway, after reading the associated article, it doesn’t sound as scary as that picture looks. And I suppose if the hookworms really do chill out MS patients’ overactive immune systems, then go Team Hookworm. Still–eesh. That image is a little too close to the giant Dune sandworms or Tremors monsters for comfort.
I much prefer this kind of worm:
So, what do you think? Would you try hookworms if the side effects were manageable? Are you already partaking in other unconventional treatments for your MS?
Everyone talks about the new year like it’s a chance to start over, to learn from mistakes of the past year and become a wiser, healthier person. This year, we tell ourselves, will be better. This year, we declare, I’ll live the life I should be living.
It’s all a sham, of course. Like Valentine’s Day or Mother’s Day. Why should we be better partners or daughters for just those days? Same applies to the new year. It’s just another day–nothing really changes–so why do we care so much? Why do we think the year, which is just a number, giving way to a new one in the calendar also grants us a fresh start?
Because we need to. Temporal markers don’t just help us keep track of the days, weeks and months, but they give us something to look forward to. If our current calendars didn’t exist, we’d invent some other way to mark the time. We need to be able to track our own progress. It’s just human nature to plan and reflect based on milestones.
When I think back on the last 10 years, which seemed to go by really fast, I have to think of all the things I’ve learned about being an adult. In 2000, I had my first real post-college, career-type job. I was a technical writer. I hated it. I was living in a one bedroom apartment in a building where the movie Singles was filmed. I stayed there for eight years, changing writing and editing jobs several times, trying out new relationships, making new friends. I tried new things like snowboarding and therapy. I grew up. I watched as my parents got older, my own gray hairs multiplied, family members died, people left. I moved out of my apartment and bought a condo with a view of the city.
Two years later, it’s 2010 and I have Multiple Sclerosis. I’ve probably had it for at least half of the past decade. I just didn’t know it, assuming the tingly feeling was just nerve damage from repeated ankle sprains.
So as I approach my next personal temporal marker–my second anniversary of living with MS is in March–I realize that in terms of living with this disease, I’m a toddler. I’m just figuring out how my new world works. I don’t know what’s best for me. But I’ve learned a few things in my short life with this disease:
Fear is the enemy–even worse than the MS. Don’t say “I can’t” before “I’ll try.”
Know when to slow down. Fatigue is a bitch and I should do my best to avoid wearing myself out because there is no second wind.
The weather can be a big jerk. Pain comes with cool, wet weather, weakness and tingling comes with humid heat. Sudden barometric changes trigger symptoms.
Whiskey, not vodka. Red, not white. For some reason, the whites make my skin prickly. I think it’s a sugar thing.
Too much sugar = instant crash. Too much salt (yum) is also a bummer.
Yoga rules, and not just for physical exercise. It’s mental and emotional exercise, too.
Bike rides rule more than yoga for both exercise and clarity. I <3 my bicycle.
I’m in charge of what’s next, even if I don’t know what that is yet.
The biggest thing I’ve learned, so far, is that MS is not the central focus of my life. I’m lucky and grateful for that. So now, I’m looking forward to leading my team for the next MS Walk, taking a Spanish class in February, travel, more yoga and maybe a martial arts class (why not?), friends’ weddings, organizing my living space and figuring out what I want from my career.
This is just what comes to mind now. I’ll add to this list, or make a new one, as I think of more. What’s on your list? What have you learned in this past year and your time living with MS?
I met with my MS support group tonight. There are about 5 or 6 of us who regularly attend our monthly meetings and it’s always good to check in with each other and hear what’s the what in the what what. I’ve learned a lot from these people. Mega hugs to them.
I’ve been a part of this group for about a year and a half now, I guess–almost as long as I’ve known about my MS. It started as a group for the newly diagnosed, but our Dx dates varied greatly, ranging from a few months to several years. At this point, “newly diagnosed” doesn’t really apply. We’re living the day-to-day lives of people with MS now–we’ve long since dealt with the initial devastation.
So we’ve sort of started to call it the “It Is What It Is” group. Not a very catchy title, but that phrase is certainly something that I’ve heard myself and others with MS–or anyone dealing with life’s cruel jokes–say so many times. Because, honestly, when you’re dealing with MS, there’s not a whole lot you can do to change it. You just have to roll with it. So the name fits.
Tonight, we did our usual round-robin status updates and chatted about our other off-topic interests–we all lead full, interesting lives, after all. Sometimes it’s better to talk about anything but MS. But it always comes back to that because even when we’re doing well (and, of course, that means different things to all of us), our MS is never too far from our minds. Multiple Sclerosis is a lurker.
Anyway, one of my group-mates, Mike, has been dealing with some pretty heavy regular-life stuff that’s piling on like an avalanche lately. Thankfully, his MS symptoms are more or less behaving themselves, but it sounds like the end of this year–and this decade–is putting his emotions to the test.
While he was talking tonight, I was reminded of the song “This Year,” by the Mountain Goats–its chorus (or is it a refrain?) has sort of been my mantra for the last few weeks: “I am gonna make it/through this year/if it kills me.” So, Mike, this one goes out to you….
It is a FACT that whenever you say things are going well–especially if you say it out loud, with witnesses–you’re just setting yourself up for a dramatic reversal. That’s just the way of the universe.
Anyway, I’ve been feeling pretty good, MS-wise, probably due to all this super-friggin’-cold and dry weather we’ve been having in Seattle (might I have found another temperature sweet-spot?). And there’s been so much else going on (work crap, holiday shizz), that I haven’t really had time to think about my MS. And it’s awesome, really, that I can say that.
But today, it’s rainy and 40-ish degrees, and, naturally, I hurt all over. It’s a bone-deep hurt enveloping my whole body. It makes me want to scream. I’m just trying not to walk like Ozzie Osborne (SHARRRUUHN!). But I’m pretty sure it’s just the sudden shift in the weather messing with me and that tomorrow will be better (fingers crossed).
Other than that, I’m fine. How are you doing?
Oh, and here is the really old (circa 1993) song that inspired the title of this post, but has nothing to do with either the weather or MS:
I sometimes think we progress through life as if we’re moving through a long series of tunnels. You don’t know where you’ll end up, but you hope it’s light and warm and safe when you get to the other end. And then you can move on to the next tunnel, with new possibilities waiting for you when you get out of that one. But sometimes the tunnel just stretches on and on and on.
So what’s been going on with me? My MS is behaving itself, if that’s what it means when my symptoms are chillaxing. No drama there, just the usual numb spots and occasional fatigue.
Work, on the other hand, has been kind of soul crushing. I had a bit of a teary heart-to-heart with a friend last night and I used words like “powerless” and “humiliated.” Not good. Time to think about moving on, I guess. I’ve been there three years and had hoped I was moving toward something, only to see that something snatched away from me and given to someone else without warning. So, the light at the end of my tunnel? I can’t see it yet.
Not to be too bleak. I know I’ll be fine. I’m smart, I’m skilled, I have opportunities. I’m just having a hard time coming to terms with my current situation and then visualizing what I want to happen next. And this song keeps popping in my head–the Arcade Fire’s “Neighborhood #1 (Tunnels).”
I love this song because its lyrics are emotionally uplifting (at the end of the tunnel, they find each other and start a new life) and it’s extremely satisfying to sing at the top of your lungs when you need a good release, like I do right now.
My sister forgot our mom’s recent birthday. As I’ve mentioned here before, my older sister also has MS. But while she’s never been a champ at remembering birthdays and anniversaries—especially in the last few years—she’s never totally blown one, either. She might be late by a day or two, but she usually realizes she forgot (or talks to me before the date so I can conveniently drop a hint).
I’ve lectured her before (I can be preachy) on the importance of writing things down or setting electronic reminders and alerts for herself if she knows she has a hard time keeping track of important dates, but my nagging doesn’t seem to have any effect.
So this year, she spaces our mom’s birthday and can’t really explain why. My mom, understandably hurt, described it as “a new low.” And then we both wondered if she forgot because of her MS. Then I sent my sister an email telling her she might want to call Mom.
So is it her MS that makes my sister blow off birthdays and anniversaries? It must be, right? Because it seems like this is more than mere forgetfulness. It’s like she doesn’t even think to remember. And while she’s certainly been accused of being thoughtless before (perhaps in this very blog), I don’t know whether that’s entirely fair.
I’m easily distracted at home and at work, and whether my own Short Attention Span Theater is MS related or not (I used to just blame the Internet), I know I have to write things down if I’m going to have any hope of remembering them. Without lists, I’d never get anything done—plus, I really like crossing things off. But, sometimes, I forget to do everything on the list and by then it’s time to make a new one….
Anyway, this all makes me wonder: Can the cognitive loss caused by MS really get so bad that you forget that you have something you’re supposed to remember? What good are lists and reminders if you don’t even know you need them? Is this where we’re all headed eventually? Will I someday forget to remember? Do these questions even matter if we’re all different and who’s to say what will happen anyway?
One thing I will never get used to with this disease is how suddenly everything changes. One day, you’re feeling okay, and then the next day, or even later the same day, BAM! Cruddy. It could be caused by a shift in the weather, stress levels, hormones, something I ate or drank, sleep patterns, or any combination of those things. I never really know–I can only guess.
This last week, I was remarking to someone that I felt almost “normal,” whatever that is. For me, it’s when I’m not constantly being nagged by symptoms–a tingly foot, numb knees, stiff hands, all-over body aches, etc.–and have to pause and think, “Oh yeah. I still have MS.” And then for a brief moment, I entertain the fantasy that maybe it’s all been a bad dream, the doctors misdiagnosed me and I don’t really have a chronic disease. Those 20-odd lesions on my brain are because of something else.
So I’m trucking along, feeling pretty good (and bragging about it), until I get to Thursday. I wake up, go to work, and after sitting in my chair for a while, stand up to walk and discover the tops of my knees are numb, which means my legs are wobbly. And so my mood plummets. I’m distracted, anxious, irritable, emotional, can’t focus on work tasks for more than a few minutes at a time and there is some actual pulling of hair (just mine, though). Oh, and lots of swearing. I even cried a little while IMing about all this with a friend. It’s safe to say, I was depressed.
But where did this shift come from? Is it the weather? The temperature did take a dip overnight and it’s been the kind of rainy that’s especially oppressive–cold, inconsistently drizzly (give me a good downpour over spitting rain or mist any day), dark and gloomy. Or it could have been that I was really, really annoyed with my absentee boss and feeling like my job has become an endless tunnel with no light at the end. Or maybe I simply jinxed myself by being positive about my MS earlier in the week.
Regardless, I can’t say for sure what precipitated this plunge in my mood. The exact cause doesn’t really matter, I guess, since the really bad parts seem to have passed. I do think I might need to actually start taking something for my occasional bouts with anxiety, though (have any of you tried GABA supplements?). I was seriously frazzled, which just made me more upset because I hate feeling like I’m not in control of my emotions. I can be a drama queen for sure, but I can tell the difference between just overreacting and a downward-spiraling inability to regulate my emotions.
Anyway, today, Sunday, I feel a bit better. Except for this hangover that’s been plaguing me all day and a mysterious numb spot on the left side of my upper lip (that is a new one). Life is full of ups and downs and it goes on…. And I’ll be off to work again tomorrow with hopes for a better week.
I’d like to take a moment to give a quick shout-out to my lovely and talented friends who took time out from their own busy lives to help make this blog possible.
First, my good pal Bill, of Foundry Interactive, who did all the back-end whiz-banging (apologies for the technical jargon), development and set-up for this WordPress-powered blog and continues to support me whenever the blog needs tweaking or updating. Bill, I don’t say it often enough: you are teh radsauce.
And then there’s my friend Grace, who illustrated the new Tingly Feeling banner you see up top. I’d wanted some kind of artistic rendering of a nerve with damaged myelin sheaths, and so I sent her some links to some images I found on Google. She totally delivered on my vague concept, creating a beautifully detailed drawing–with some pretty seriously damaged myelin. I keep thinking, I’d hate to have that nerve (but maybe I do?). Anyway, Grace is hell of talented. You can see more of her illustration work on her blog.
You guys rule. Thank you sooooo much for all your help. xoxo
I stayed home from work today. Sick, but not so sick that I can’t take advantage of the bonus time. I need to take wellness days more often, to recharge and regain my bearings.
Time is such a swirl these days and with the holidays approaching–oh yes, they’re a-comin’ and fast–it’s only going to get worse. It’s gotten so I can’t keep track of my calendar. Either I mix up what day something is happening, even though I have written it down somewhere, or I just don’t know what day it is at all.
So, today, I’m taking care of some housekeeping items (fresh sheets, pay some bills, etc.) and taking care of myself. First order of business, eat something. It’s almost 2pm and I haven’t had any food. I’m going to blame my lack of appetite on the cold. But soon, I will be enjoying a nice, steaming-hot bowl of pho noodle soup. And maybe a Cafe Sua. I know coffee isn’t the best thing for a cold, but Vietnamese coffee is soooo good.
Everyone talks about the new year like it’s a chance to start over, to learn from mistakes of the past year and become a wiser, healthier person. This year, we tell ourselves, will be better. This year, we declare, I’ll live the life I should be living.
One thing I will never get used to with this disease is how suddenly everything changes. One day, you’re feeling okay, and then the next day, or even later the same day, BAM! Cruddy. It could be caused by a shift in the weather, stress levels, hormones, something I ate or drank, sleep patterns, or any combination of those things. I never really know–I can only guess.
I stayed home from work today. Sick, but not so sick that I can’t take advantage of the bonus time. I need to take wellness days more often, to recharge and regain my bearings.