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Click to enlarge.
So this was the day, four years ago, when I heard the words that changed my life.
I’m not going to write a huge post about how these past four years have been for me (kind of hard). I’m just going to say I finally realized my MS is not Voldemort and I actually started saying out loud that I have it. Of course I don’t go around introducing myself “Hi, I’m Sónia and I have MS” – and of course work is also a different story – but in specific contexts, like when I met a physical therapist and asked for her number (because I have MS and who knows if one day I may need you), or when I tried to explain the lady at the drug store I can’t just take anything for insomnia and/or depression (because I have MS and it might interfere), it makes sense that I stop hiding and being ashamed. It’s just a fact, not a judgment. I have MS.
I’m also glad that even though I changed in many aspects, I haven’t lost sight of who I am. It’s inevitable to change when you’re faced with a condition like MS. Some changes you make consciously, some changes the disease makes for you and you only realize later on, but you’re bound to change. Still, I’ve managed to keep the core of what makes me who I am mostly untouched, through all the damage, the angry words, the sorrow in my heart and the scar tissue in my brain that just won’t heal itself no matter how much I pray. In this way, MS can’t tame me. I will be fiercely holding on to what I feel makes me human – to my essence. That’s what I’ll be celebrating tonight. And who knows, in the end, even Voldemort was defeated.
My recent bout of insomnia, that I relate to the anxiety and change of routine caused by my master’s classes, has been met with skepticism from everyone from my mother to my therapist. I see them frown and ask, “Couldn’t this have something to do with Tecfidera?”
The taking of the full dose of Tecfidera coincided precisely with the beginning of my classes, so there was really no way to be sure unless I talked to my neuro, but I know deep inside in my gut that these past two months of insomnia have everything to do with anxiety originated by classes. Because I feel anxious, that restless feeling inside my chest that is so familiar. Because when I wake up in the middle of the night is usually due to some nightmare. Because I’ve been living with myself for the past 33 years. Continue reading
One funny thing that’s been happening to me since I was diagnosed with MS is that I’ve been growing more and more intolerant to suffering. Not just me: I’ve noticed friends of mine who either also deal with chronic illness or who have been face to face with life threatening situations also tend to turn their backs more often at what’s making life a little unbearable, a little suffocating, a little boring, a little waste of time. Continue reading
So… classes started last month and suddenly I can’t catch my breath and write a few words here. But here I am trying to keep you up to date.
At the beginning of the month, October 5th to be more specific, I switched to the full dose of Tecfidera. I thought, considering how bad my flushing could be on the smaller dose, that I would simply go from flushed to radioactive. As it turns out, nothing weird happen. I never had headaches or itching anymore, and although I still flush, it didn’t get worse. Some days it’s actually milder. So that’s really good. Continue reading
Today I went to the hospital to pick up my test results.
I opened the blood tests first because I suspected there wouldn’t be much to be afraid of on that front. And as I suspected, everything was normal. Great.
So off to the MRI results. I started reading, I read again, and I reread, in confusion, amazement… in disbelief. And then I was completely stoked. There are no new lesions. None. Zero. Nothing. Nada. Not in the brain, not in the spinal cord. And nothing lights up after contrast, which means the old lesions aren’t active.
I was thinking how come…? I had one of the most difficult, most stressful years of my life. I’ve been off any meds for over half a year. I was worse off with the meds? What does this even mean? Was it the going back to yoga classes? Was it the trying to stress less at work? Was it the extra vitamin D I got this summer by spending more time at the beach?
But then I thought no more. I take it as it is. I’m not asking any questions until I see a doctor.
I called my mother. She said it’s just my sheer strength. That I’m going to be OK. And I cried tears of joy for the first time in years.
2 weeks in and looks like I’m still trying to get the hang of it.
So far the most obvious side effects I’ve dealt with were headaches, flushing and itching.
The headaches used to appear 5 to 10 minutes after taking the capsule, so they were very easy to link to the medication. Continue reading
At the start of every school year, the place where I used to have my contemporary dance classes lets you try each of the classes and each of the levels once for free. I stopped dancing in July 2013 when I was diagnosed with endometriosis and told I had to have surgery. The surgery turned out not be necessary but then I went back to college and stayed away from dancing in order not to overdo it and have an MS relapse. With my masters starting two weeks from now looks like it’ll be another two years before I can go back to dancing. But that didn’t stop me from trying one of the classes for free tonight. I thought I’d be completely out of shape, I thought I’d forgotten everything, but the truth is the body has a memory of its own. For one hour today I felt really really happy, like I haven’t been in a long time. Like this is what I was born to do if MS hadn’t got in the way. I felt completely and positively alive. And I hope I can carry this feeling with me for the times to come.
My father thinks I was being pessimistic about those side effects Tecfidera is known for. I don’t think so. For starters, my father didn’t even know what kind of side effects he was talking about until I enlightened him. Continue reading