Two years ago, a group of some pretty incredible people joined Stacey and me to participate in MuckFest MS.
If you have never looked into it, I encourage you to. Basically, it’s a 5k obstacle course focused on bringing the local communities of people with MS and those that support them together to raise money for MS research.
All proceeds go to the National Multiple Sclerosis Society, which is a great resource for the vast community living with MS every day.
If you want to support Stacey and her team, you can do so here!
It also marked the first time that Stacey publically embraced her diagnosis, by “Mucking with MS” and fundraising for the cause.
Now, two years later, Stacey and I agreed that we wanted to be more open about our experiences, so here’s where we’ll start… at the beginning.
Getting the diagnosis was a life changing moment for Stacey and by proximity, me. I’ll never claim to fully understand what it means to live with MS, and I certainly won’t claim to speak for Stacey here.
My hope is just to shed some light on the amazing woman she is and talk a bit about what it means to live with MS in your life.
Stacey was diagnosed 5 years ago. For those of you who don’t know, multiple sclerosis isn’t diagnosed it’s settled on. You can’t test positive for MS; it’s a process of elimination.
You sit there waiting as each negative result from test after test stacks closer and closer to the one thing they’ve told you is “Highly Unlikely”.
Finally, when all other conditions are ruled out, you’re given the news.
It knocks the wind out of you. In a moment, your entire life begins to flash before your eyes – not what’s been, but what will happen. Each moment you’d planned in life suddenly blurs and fades because you are faced with the notion that there are no more “plans”.
And that was just my experience. For Stacey… well, I can’t imagine what it was like for her.
From that moment, the train started running. The doctors were in and out talking therapies (no cure, so no “treatments”), what’s good, what’s bad, and what they think you should be taking.
Each medication has its own laundry list of side effects (including depression; as if that was something anyone needs help with after being diagnosed) and none of them are guaranteed to work.
The truth of MS is that no one really knows what the effects will be person to person. Because MS affects the nerves, the symptoms can manifest themselves in too many ways to count. From weakness and numbness to vision issues and paralysis, there’s no real way to know what will happen or when.
Stopping a moment here: if you’re not sure what MS is, or what it does to the body, you can read a great break down here.
For Stacey, her first major relapses post-diagnosis manifested themselves as weakness on the left side of her body. She couldn’t lift her arm past her shoulder, her leg began to get sluggish and there were difficulties controlling her ankle.
What did Stacey do?
She figured out how to cope with the arm (fortunately she is right-handed, and with a little help from me when needed) and she switched to wedges instead of heels.
What a fucking woman, #amIright?
Thankfully, after in-home steroid IV treatments, she was able to tear a car in ha– I mean… she was able to regain the strength in her limbs. (though she could probably tear at least 3 sheets of paper with ease)
Steroids treat the symptoms after they occur, while the therapies help to prevent them… in most cases.
During all this, she started her first medication (or therapy), the first but not the last. Since then she’s been on 4 medications, 5 different times – from infusions to thrice weekly shots to daily pills, back to shots and finally back to pills.
Amazing to think what we’ve both gotten good at and comfortable with over the past 5 years. Stacey used to hate needles and now she’s a pro at giving herself shots; I only had to help right at the beginning.
Why all the switching?
Well, it could be that the side effects could be worse than MS (I know…right?), the meds didn’t do enough to prevent relapses, or for another life choice.
All of which happened to us, hard to stay on a medication where death is a potential side effect…whatever happened to painful diarrhea?
Our life choice? Starting a family. With the meds she was on (the best ones we have found for her, by the way), it was not safe to have kids. Since this was incredibly important to Stax, the decision was made to change medications again to one that she could be on until we conceived.
I want you to take a moment to think about how brave that is. For someone to knowingly increase the odds against them like that. To put themselves in a position of truly not knowing what would happen next.
The truth was, I was against it. Not that I didn’t want to have kids – I want that very much. I was just so scared of what could happen to her. But, like in many cases I could mention, she helped me to be brave and we took the leap.
We had to wait a few months (there always seems to be transition time – nothing is ever quick), but as soon as the green light was given, we got to getting. Unfortunately, the medication that we switched to was not nearly as strong as the previous meds, and after a few months, Stacey had a small relapse. It was minor weakness in her leg again (same leg) and we were able to control it with a short oral steroid treatment.
Even though she recovered quickly, I again told her how scared I was. She agreed that it was scary, but we both still wanted to have a family. We talked and we agonized over it… this disease that had been fully controlled for the past two and a half years had come back.
Again, our desire for a family won out… for a month or so. After two more relapses hit back to back this summer, the decision was made to go back on the more trusted medication for at least a year. Our dream of a family has been put on hold for a little while longer.
That’s where you find Camp Garcia today. Five and a half years later, we’re still navigating the uncertain waters of what it means to live with a chronic illness.
While I’d give anything to take this burden from her, I’ll have to accept that all I can do is support her in whatever way I can. It’s a terrible thing to feel helpless to help the one you love, but I eventually realized that I’m not helpless, not entirely.
It’s why I go to doctor appointments, cook gluten free, run races, and read article after article to catch the next medical breakthrough. It’s little in the scope of things, but I hope that as long as she knows she’s not alone, it will help in those days where there isn’t much fight left.
I’d be lying if I said that this hasn’t changed my life, but I’d be a fool to say that there is anywhere else I’d rather be than living this new life with her.
I'm an acting/improvising optimizing son of a gun.
I've been living and working and performing in Chicago since 2005. I love to eat, travel, talk and make people laugh. So for me this blog stuff is pretty neat.
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