So Far, So…Good……zzzzzzzzz

After 13 -1/2 years, close to 5,000 injections and nearly $700,000 I have finally moved off of my trusty “bruise juice” Copaxone and moved on to a new pill for treatment of MS. Hooray! This is big news by anyone’s standards (especially for the diabetics in my life) but I have been suffering big time from what is called “needle fatigue”. This is a condition according to MSers whereby the daily injection of….oh for Pete’s sake, it’s when you are bloody sick and tired of shooting up, plain and simple. The initial plan is to rotate and keep track on this nifty little body part chart the drug company gives you: Monday left arm, Tuesday right arm, Wednesday left leg, and so on. This results in a series of nasty little dents in your biceps, thighs, hips and belly. In my case, I don’t carry enough meat on my arm or leg parts, so I resorted to injecting in my rather ample belly and hips only for the last 5 years or so. The Copaxone made sure to increase the dented, blobby mass of those areas for me as well. Yay!

But – pshaw! That’s all behind me now. This new drug, called Tecfidera, is made out of dry cleaning fluid or some such disagreeable thing and like all MS drugs they have zero idea how it works. I swear I was a Guinea pig in a former life because I get these RX’s and go, OK! let’s pop some formaldehyde! Does it contain resin, plastic and particle board bits? Bring it on!

Not surprisingly, there is a long list of not so pretty side effects that goes along with the prescription. The main ones are flushing, itching, projectile body fluids of all types, weight gain, hair loss and so on. Not one to go marching into this new pill popping venture unprepared (I was a girl scout leader after all), I loaded up on baby aspirin (for flushing), Benedryl (for itching), Gas-X and probiotics (for the intestinal distress). Good to go.

I took my first pill and waited at home. Nothing…nothing…nothing….uh oh! My skin is starting to get prickly. No worries ~ I’ve eaten, taken an aspirin and now take a Benedryl to nip this in the bud. And it works! After about an hour, I head over to the store to exalt over my success with my first pill to Anna. I am happy, she is happy ~ we’ve read some horror stories and this is turning out to be a cake walk.

About an hour or so later, I start to feel really droopy.  I can’t keep my head up or my eye lids open and so excuse myself to go home and take a 3 hour nap. Anna suggests that if I can avoid the other nasty effects and the pill only makes me tired, that’s not such a bad thing. I agree, but am thinking I can’t go through the day feeling this fucking tired all the time ~ I’ll become bed ridden! Forget the needle fatigue, this is just plain old fatigue.

After a little bit of research and some advice from  a few seasoned veterans, I realize much to my chagrin, that the Tec doesn’t cause fatigue, but boy Benydryl sure does. Doh! of course.

So now I’m on my second week, taking the full strength dose and thinking I’m feeling pretty good. This is a cinch! It seems I have a cast iron constitution and no little systemic methanol is going to slow me down. I woke up this morning perky, raring to go, and planned my day. First some yoga, then some errands, then a nice dinner, then my drum class.

It started in yoga. We were working on balance, always a particular challenge for me. This time though, I found that in addition to falling over I had big tears running down my face. Huge crocodile tears. Non-stop emotional release tears. Not being much of the crying sort, I brushed them aside and soldiered through class (kind of weeping the whole time) and then came home and just sat down. For about four hours. The errands went out the window and I canceled my drum class. I had to hit the store though for some groceries so I ran into Trader Joe’s. The nice clerk asked me how I was doing in a standard chit chatty sort of way as I was paying and I started to cry. Wow, really!? Choked up over bananas and quinoa?

Despite the fact that I’m bloated, sobbing and half asleep most of the time, I’m hopeful that this truly is my panacea for MS. Considering I can’t face another needle, it damn well better be!

images

What the Hell?

Sigh. According to NOAA it’s going to be 102 degrees today. And 107 degrees tomorrow. Really? Pure hell. My fellow MS-ers out there know what that means. Everything that is twitchy, painful, exhausting, numb, jumpy, gimpy, burning or just plain off ~ is about to get worse.

For the most part, I put myself under house arrest and do not go outside. This sounds like a perfect opportunity then to do laundry, pay bills, clean the kitchen, vacuum, go through closets, etc. Not so. Despite an air conditioner that goes up to a Stun setting, the heat permeates the psyche in mysterious ways that deem book reading a major activity. Fortunately, my friends gave me some books to read last night, I have some cold watermelon in the refrigerator, and a house full of many, and very, patient dust bunnies.

I went up to Seattle last month to visit my sister, brother in law and nephews. My sister, as I’ve mentioned before, is an amazing athlete. She runs, rows, does yoga, bikes… all while raising two incredible and active young men, working full time, running a gourmet kitchen and helping her husband start a new venture. She is basically fabulous (and today’s her birthday ~ happy day, Lisa!).

Lisa works out with a trainer in Seattle named Michael. Michael is 1) gorgeous 2) patient 3) knowledgeable 4) kind 5) see #1. As a birthday gift to me, Lisa gave me a session with Michael at his gym (where I’ve discovered my sister is some what of an icon ~ all the women aspire to be as strong as she is). Michael gave me a wonderful series of exercises using bands, light weights, balls and straps. I came home all gung-ho and worked out every day ~ balance was better, the hirple eased up, I slept better. Then…a trip to California, so I missed 5 days….now it’s as hot as hell here, and a workout consists of lifting the lever to turn the A/C up. This is not good.

Writing this is confirming my evolution of morphing into a slug. As much as I may not like the whole bathing suit thing I am going to go right now and head over to the pool for some water jogging. I can see Lisa waving at me and giving me a high five ~ that’s all the encouragement I need. Thanks, sis!

Yoga

I’ve always been a pretty active person, and I still work out at the gym as much as I can. I’ve worked out with a trainer, taken classes, lifted weights, done Pilates, circuit training, aerobics, Jazzercise (remember that!?), step classes, jogging, hiking, pretty much everything but skiing. Two things I don’t do: ski, and clean house, but that’s another story.

Prior to my MS diagnosis, I knew that there was some pretty wacky and random stuff going on with my body. The suggestion came from friends that I should try yoga to help put my body back in balance. Sure! Let’s do that!

Generally, I am not the kind of person who does much research once I get a bug in my bonnet. I leap faithfully out of the plane and say “oh! Was I supposed to have a parachute? Who knew!” Yoga was no different. I went down to my local Yoga and You, A New Way of Life, or whatever it was called, unrolled my new pink yoga mat and prepared to become balanced.

Balance is a key word here, as those of us with MS know. I can only look at the stars from flat on my back, fall into giggling fits every time I try to walk with my eyes closed, and can walk a straight line and end up across the street. And, as anyone with MS can attest to, heat is not our friend, particularly when it comes to balance.

Now, if I’d done any research at all, I’d have realized that Bikram was not the name of the instructor, or the owner of the yoga studio. Instead, I began to stretch and bend along with about 10 other very stretchy and bendable people. I feel a little bit awkward, but ok. The room is nice and toasty which I find sort of soothing, initially. Then the instructor has us stand on one foot with the other bent up to our knee. This did not go well for me, but I keep trying. The room starts to get even warmer. I must really be working myself out! Even though it doesn’t seem that tough, I’m sweating like a pig!

She instructs us to stand on one foot and lean forward with the other leg extended behind. Ok, maybe not so much for me. Then, switch that pose with a little leap. Ha ha! I don’t think so! Now downward dog and lift another leg! By now, she’s figured out I must be new, so she guides me to the wall and tells me to lean against that – many newbies have a problem with these advanced class poses. Advanced class!? How did I manage to get into an advanced class and why IS IT SO HOT!?

By the time things wind down and we’re just standing there with our hands in front us doing a namaste thing, I can’t even stand on two feet. I’m sagging against the wall, sweat pouring off of me, unable to walk.  I feel like a noodle that’s been sucked out of a soggy bowl of soup. The last thing I feel is balanced.

I slither along the wall towards the door. The instructor sings out to me in her calm, serene, oh-so- invigorated voice “See you next week! It gets easier with practice!” I wouldn’t know. Hell will freeze over before I go see Mr. Bikram again, and bad as I might be, I’m not going there. It’s too hot.

November 5, 2009

La Crescenta, CA