The Relapse Diaries
The “funny” thing about MS is that relapses spring up on you at the most inconvenient times. Life has been going at warp speed lately which is totally great, but naturally those are the moments when MS likes to remind you of its presence…and that it can knock you on your butt any moment that it pleases. MS and I are learning to coexist amicably, but we are having a bit of a falling out right now. I’ve done everything it asks, but still it takes. I keep cool while I exercise, I religiously take my medications and supplements, I rest, I eat right, I try to keep my stress levels down. But even still, relapses happen. My first reaction is usually to comb through everything and try to find out what I did wrong. The answer is nothing, I’ve done nothing wrong. I can do everything right and still, inevitably, I’m going to have relapses and bad days. But that is life! Everyone has curveballs thrown at them, people with MS just happen to know who the pitcher is.
I’ve known something was “brewing” for weeks. I always get kind of a premonition leading up to a relapse. The only way I can describe it is a sense of impending doom, and I used to think that I was just crazy until I started hearing the same thing from several other MS patients. Then one day last week I noticed that I was having trouble flexing the muscles of my right leg. I rested, I hydrated, and I didn’t think too much of it since a relapse isn’t a true relapse until symptoms persist for more than 24 hours. The next morning I woke up with foot drop. Foot drop is when you can’t pick up your foot and the toes drag on the ground as you walk. I was stumbling around and having a lot of trouble walking, which is when my fiancé Michael gave me the “ok now it’s time to call the doctor” look. I hate that look, but I love him for keeping me accountable because otherwise I would grin and bear it for way too long. This was also immediately followed by the “it’s time to call our parents” look which is equally bad for me because of the wave of guilt that I feel after breaking bad news to them. My wonderful family has already been through so much along this MS journey of mine that sometimes I feel like they have the worse end of the deal. I've learned that I can’t protect them by keeping things myself though. Also, hell hath no furry like an uninformed family…and I was seeing mine in a couple of days so hiding it would surely backfire. By this time I had also lost most of the muscle tone in my leg, essentially rendering it limp and floppy like it was asleep, but without the numbness and tingling. So the next morning Michael drove me to have an MRI (since a woman with a floppy foot is a hazard on the New Jersey Turnpike), and then to CVS to pick up my very first cane. We also got some stickers to make it a little bit snazzier! Once I got Michael to stop posing with the cane like he was Mr. Peanut, it really helped me to get around.
My MRI of the spine was stable, which was great news since I have very little room to spare there, but we didn’t do an MRI of the brain so I’m not sure if I have any new lesions or not. I’m still in my first few months of taking Gilenya so I’m waiting for it to have full effect, and in the meantime I did a five day course of IV steroids. That was where the real fun came in! Of course I had plans to attend a friend’s wedding in Colorado the same week, and I decided to still go. I was meeting my family there so the trip involved me traveling by myself along with my heavy bags, cane, and IV steroids. I swallowed my pride and got a wheelchair escort through the airport at the insistence of my doctor, and I didn’t hate getting a skip-the-line pass at security! Each day I gave my steroids through an IV in my arm while looking over the picturesque Colorado mountainscape- not bad! I even managed a few excursions out and about and, at the suggestion of a friend, I decorated my new cane with a few bumper stickers from all the new sites I had the chance to see. By the return trip I was thankfully walking without assistance again, and IV free. The trip was great, the wedding was beautiful, and right about now my couch feels like the happiest place on earth. Now onto recovering, one day at a time.
How many specialists did you see before finding "The One"?