Monday, May 23, 2016

Who's the Boss?

Well it has been a year since MS reminded me that it was the boss of me. Yes, yes I know my disease doesn't define me and blah blah blah... but seriously for the first five years minus the initial flare up, I was living symptom free for days, weeks, months... even years. Until May 2015. What better time for MS to show up than when my husband has moved to California and we are packing up our house to move across country to join him? Sure, why not? I can handle more... Actually no. No I can't. Seriously, it is a wonder I wasn't hospitalized last summer. Well I should have been and tried to see a doctor but I've told you that story so there's no sense in repeating. Now on to today. Today is about one year, give or take a few days, since "the flare up that never ends" started. Seriously it is still going on. A YEAR LATER. I have numbness in my head on the right side, still a numb left leg and sometimes the right side joins in after a long walk on the beach or hike through the hills of California. And of course, there's the vision thing. It is so much better than it was but it still goes double sometimes and it is down right frustrating. So today was a routine visit to my neurologist to update him on my symptoms, ask if a cure had been found and discuss my current drug. I am not a fan of my current neurologist but honestly finding a neurologist is about as fun as getting your wisdom teeth pulled without anesthesia. OK, I don't actually know what that would be like but I imagine it to be awful so play along... I found this neurologist as a referral and he's fine. He's not great. He's not personal. He's just fine. It has been six months since I started Tecfidera, a pill for MS. I am sure you've seen the glorious commercial of the woman who goes from hiking to swimming to a carnival and doesn't she look fabulous while doing it? Well the drug has been no carnival- I would get hives, itchy, wake up in the middle of the night with burning skin (think too many hours in the sun with zero SPF)... anyway it was just not for me. So I stopped taking it at the beginning of May. I've had some weird new symptoms that could be tied to it, could be MS or could just be God poking fun at me... who knows? So today I decided to revisit an old option, my first MS drug, Copaxone. This is an injection. Until a few years ago, injections were the only option. Then pills came along and heck, everyone signed up for that (or so it seemed) because who wants to give shots to themselves? Ummm, no one. So why am I going back on Copaxone? When I was on Copaxone, injections were SEVEN days a week... well new studies show that Copaxone injections only need to be THREE times a week so I am going to give it a shot (you like that play on words?). I didn't have any real issues with Copaxone other than the frequency of shots. T-minus about 30 days to first injection... that's how long the paperwork takes these days. Here's the sad truth of this little story. I explained to my neurologist today that for five years I really didn't feel like I had MS and now, every day, EVERY SINGLE DAY, I feel my MS. It sucks. I am not telling you this for sympathy. I don't want it. I am just educating you on my journey. I'll take your prayers, your well wishes, your free hot dishes (did you like that? that's for you, Minnesota family). If life has afforded you financial gifts to bestow, consider giving to MS research. You pick it. I don't care. Just get me a cure. Cure Autism too. Please and Thank you.

Tuesday, January 19, 2016

The F Word...

Fatigue. Have you experienced it? I mean the feeling where you are so tired, that your body is heavy and your limbs feel pain because of the exhaustion. Fatigue is a side effect of MS. It does suck sometimes. My biggest trigger is sleep, or should I say, lack of sleep. I've found that a solid eight hours is ideal but 10 makes me function even better. Fatigue plagued me quite a bit over the holidays but it was worth the experiences I got to have! Our family traveled to Tahoe, Phoenix and Las Vegas over the two week holiday break. It was a lot of driving - yes we drove! but it was so fun to see family! Living in California has been quite nice for me especially because I get to see my family so much easier (and cheaper) than in years past. You may be wondering how I am doing on Tecfidera and I'm happy to say that I am doing pretty good. I am sitting here at the computer with flushed cheeks at the moment but I'll take that over the the laundry list of side effects they rattle off in those commercials! The bigger question now is, "Is it working?" The answer... I have no idea. My vision is improved about 80% of the time. My numbness is the same and most likely permanent at this point. Although, miracles happen every day so perhaps some day I'll be back to full strength again. I am glad I chose to get back on medication. I was terrified of the potential interference with my day to day life but so far, so good. The lingering question for me of course is what if this doesn't work? Doesn't slow the disease down? Then what? Well that would mean shots again most likely. I hate shots. Does anyone like them? Please raise your hand if you like shots. For now, I am going to hope that the pill option works and I can continue on with my big blue pill twice a day. My next MRI will likely be at the end of April. It will check for disease activity and progression... if things are quiet, I'll continue this course. If the disease is rowdy, I'll try something else. I've heard about stem cell therapy options but that means chemotherapy to wipe out your immune system and rebuild it... YIKES. Right now there are clinical trials taking place in Chicago for this option. It's encouraging for the future of MS, especially those experiencing the serious side effects of this stupid disease. I am grateful for modern medicine, really I am. I just wish medicine would eradicate diseases instead of just creating band-aids to deal with them. I imagine most of you are nodding in agreement with that one, huh? Peace.