After a dark, dark week there is light.
I ventured into a UCSF’s medical center today, and for the first time I was armed with information. I was armed with questions. I left feeling better than I have in weeks.
First things first, I do have active lesions and new lesions. Now, I definitely had a flare up in April/May that probably occurred because I wasn’t dealing with my disease, because I waited until June to start medication that I should have been on for over a year.
Tecfidera doesn’t work for everyone with MS, so there’s a chance that I will end up having to try something new. But, the lesions I do have aren’t indicative of the efficacy of Tecfidera. The medication typically takes a few months to start working. When I go for my MRI in January, I will know much more about how it is working for me.
I don’t have that many new lesions, and again, it could be a good thing, or any of them could be a bad thing. Like everything with MS, we just don’t know where my path leads.
My neurologist seems to think that I 100% have Relapsing-Remitting MS, and that is definitely a good thing. While men make up just 1/3ish of all MS cases, most men have a more active and vicious forms of MS. My symptoms seem to point to me not having it “that bad.” I’ve been lucky, I haven’t had my mobility seriously effected yet. While I have vision issues, auditory issues, balance issues, and some fatigue, I haven’t been hospitalized, and I haven’t had to miss weeks of work/life.
This could mean that my MS isn’t progressing super actively, or it could mean nothing. Again, MS is a sly, sneaky jerkoff, and you can’t predict much.
My vitamin D levels are low. While there is no “proof” of high vitamin D helping with MS symptons and progression, there is a correlation with low levels and people that have more frequent relapses. I’m starting to take supplements for this.
I’ve lost 52 pounds. I feel better overall.
Depression is a side effect of some MS medications, but not Tecfidera. Let’s all root that this miracle medicine ends up working. MS does physically cause depression, and with any lifelong disease comes stress, and a level of anxiety that anyone would have to deal with.
I need to find ways to exercise more, and keep going because of the last two statements. Getting outside, and experiencing California helps me avoid depression, and will also help me keep going on weight loss. I need to get smaller, to be frank, because any extra weight I’m carrying will only make a flareup and loss of motor skills more devastating. Swimming, elliptical machines, long walks, and maybe riding a bike are in play.
I fully understand something I didn’t want to think about. There may have not been a pot-hole involved in my broken ankle. Alcohol mixed with running, mixed with a 350 pound body, mixed with the effects of Multiple Sclerosis probably put this 9 inch plate in my leg.
I have more to learn. I don’t know enough about MS, and although I have an interest in neurology, took classes in it, and know the basics of the brain’s anatomy I don’t know enough off hand about what is affecting me. I can handle learning new information and I can handle it because I am strong enough to stare this down and want to win now.
I am going through the visual testing again, and have to go back in to UCSF to both develop a more accurate baseline to test against, and to see what damage has happened since my last tests in January 2013.
I have a journey ahead of me, but who doesn’t. In reality, who knows what’s going to happen tomorrow? No one, and that’s what makes this journey exciting.
I walked in scared, I walked out still scared, but a little more knowledgeable today. I, luckily, got caught in some Bay Bridge traffic so I could think on my way home.
For the last 3 months I have gone through some stuff. Most of the bad stuff comes directly out of me freaking out about my situation. I look internally for motivation and when it’s there it’s great. When I lose it, I lose everything that makes me me.
I have a lot to be proud of. I have a lot to strive for and I have a lot to accomplish in life. MS can’t and won’t take that away from me. I am not MS. MS is not me. It’s something that I’m dealing with, it’s something that can make me feel horrible, but can’t make me horrible.
I give everyone I know the benefit of the doubt, use empathy to guide my views on other people. I can’t think of one person in the world that I hate. People who wrong me, and people that are “bad,” probably got that way by dealing with stuff in their lives.
It’s time to look at myself with that mindset. Cycling from being really hard on myself and not proud of anything I do, to super cocky and reckless creates a scenario where I know what’s coming and can’t avoid it.
Honestly, a part of me took my diagnoses so easily because I felt like I deserved “something.” I have never tried super hard to take care of myself, and I have never been one to blame others for anything that happens to me. I felt like it just made some sense.
That’s bullshit. I don’t think it’s cocky for me to believe that when I can get out of my own way I am a successful, driven, caring, and helping person. I get good things from other people because I throw out good things. I don’t have a jealousy issue and am generally happy for my friends when they do great things.
For the past two weeks I have questioned my decision to throw this blog out there. During the bad times it’s because I just wanted to fully go down the old road of “fuck it” and just have a good time without dealing with any repercussions from those around me. During the good times, it’s because I don’t want to be defined as Matt With MS.
While some valid concerns do exist, writing a new post always makes me feel a little better. A lot of times I could address the audience I’m writing to, simply as “Myself.” It’s cathartic. It helps me be honest internally. It helps me realize things about myself a week later, instead of 2-3 months down the line.
For the last week things started to turn on. I looked at my tasks at work, and started to feel like I wanted to accomplish something. I look at the sky when I walk outside and smile. I look at my phone and don’t think about who I can call that hasn’t had to deal with me that much yet. I look at other people in the eye that I don’t know, as opposed to avoiding eye contact. I see women looking at me, and I’m noticing more receptive looks. I look in the mirror and don’t think about all that needs to change. I look at my life and see promise and opportunity.
I will fall in love again, I will find joy in athletics again, and I will have success at work again. I’m not someone that quits for real, I just fight the idea that I want to give up. I’m not going to let myself ever stop. I look at the same message I got through a phone 3 weeks ago, told directly to me in person today, and I see so much silver lining that I can’t help but be positive.
I am flying east on Friday, and I am excited to come home for comfort reasons, for family, and for friends. But, possibly selfishly, I am excited to come home proud of myself. Not cocky, like I was in the winter, but actually proud. I’ve been humbled by MS, I’ve been scared by it, and I’ve been distraught from it. But I haven’t been defeated, and dare I say, I’m not even playing from behind anymore.
I listened to every reason why I shouldn’t run on solid ground, and I don’t plan on being stupid to train. But, I will run outside on one day this year, October 11th. To get there, I am getting back to walking more, like I did the last 2 months, until last week. I’m also not talking about joining a gym, I’m joining. On October 11th I will be 32 years old for 1 day, I will also finish the MS Muckfest. The last 5k I participated in didn’t involve mud or obstacles, and it was in 2001 for a 9/11 fundraiser. 13 years later, I’m going to win.