MS and Other Medical Conditions

INTERVIEWER: Yeah. So, the year that you were sort of dealing with breast cancer, anything else you’d like to say about how your MS, sort of what that was like to have cancer and also be trying to manage your MS?  

Yeah. So, in all honesty, MS kind of took a back seat for that year. I mean, if I was symptomatic with my MS, I don’t remember, or I ignored it. So, the year that I went through breast cancer, my kids at that point would have been 6, 8, 10, 13. So my two younger ones, you know, they were in like pre-K, first grade. You know, they were still pretty young. So, I was pretty sick. I had the surgery. I had 6 rounds of chemotherapy, and then I had 45 straight days of radiation. So, it was January through like the end of September, and then I went right on a estrogen-blocking medication for 5 years, which put me in medicinal menopause at age 40, which was rather crappy. But in answer to your question, the MS, all I can say is it kind of just took a back seat during the year 2013. And then, as I said, probably October, November of that year, then I started back up on my MS medication, just kind of picked up where I left off and just continued from there. 

And slowly, though, as I talked about my situation with the MS group. I was getting the sense that they weren't hearing me. Like, I was in pain all the time-- I woke up in pain. And one time, I remember, specifically, it was the last time I went there as-- at that second stage of my MS support group. I-- I made the point to say, “Doesn't anybody else? Are-- anybody-- don't you wake up with pain in your legs?” And not a single person said yes. I said-- to me, that was like, I didn't get that. I don't understand why you don't. And I was kind of mad, you know. Like, I'm in pain all the time and, yes, once I get to take my meds-- but no one else felt that. And I was just like, so annoyed and I'm like, I'm never going there again and blah, blah, blah. And that's just my, my emotional instability. But later on, I did find out that not only do I have MS, I also have other autoimmune diseases. And the pains that I was getting is actually from undifferentiated connective tissue disease, which is, one of the lupus umbrellas-- it’s under the lupus umbrellas. So, I had that I have Hashimoto’s, and I have Raynaud’s, and I have, like, I feel you don't only have one, you have many-- it's a slew, it's a package." And eventually, you find out that the symptoms happen, not only with one condition, or the other, they intertwine and sometimes there's just no, no telling what it is. So, that was kind of frustrating for me.  

And I think the biggest issue was my migraines would be terrible because I was having this inflammatory, flu-like thing. But I am a person with migraines. And so, any sort of disruption to my baseline basically just makes my brain go crazy, and I'm in a lot of pain. 

And so, at the time I was working, like, 75% effort at this consulting firm. And I just kept calling in sick because I was in so much pain from the migraines. It took me, I think, a couple of months to do the math and figure out it actually was really strongly correlated with when I was doing my injections. So, at that point was when I figured out, like, OK, I think there's a problem with this medication, and it's not the one for me. I need to look into something else.

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I think a few months after I started on Tysabri, I had sort of a crisis with my migraines where I just had one that never ended. And some of the best abortifacient-- so in the moment, treating a migraine to make it go away-- medications are IV. And so, I was in and out of the infusion center a lot trying to treat my migraines but also keep up with my MS medication. And then at that point I got a migraine that was so bad that I had to actually quit my job and move home with my parents--   

INTERVIEWER: Wow.   

--because I couldn't work. Yeah, so that wasn't an MS thing. But I still had MS while this was going on. 

I'm in a unique position where I have two diseases, and I have to choose which one I want to treat. And what's next? I'm already on what I have been told is the strongest therapy there is, and it's not working. So, what's next? I can't take Lemtrada® because I have a lot of other autoimmune diseases, and Lemtrada® can cause other autoimmune diseases, and I don't want any more. It's like a big empty space, and you don't know-- like you're in a big field or something, and you're lost, or maybe like being in a maze and you're lost. You don't know which direction to turn because you don't know what to do. There are no medications on the market that I can take that are going to work. So I just feel lost and disgusted.  

INTERVIEWER: So, given this idea that MS, as you said, is sort of your body against itself, how does having MS make you think about yourself as a person, in your sense of who you are?

I'm a person with MS, among other things, at this point. But right now, I'm much more person with COPD because I have the oxygen tubes to remind me all the time.

And I’m able to pinpoint, like for instance, there’s a couple MS medications right now that are not good if you have a history of breast cancer. So, like I know those are like off the table for me. There’s, you know, a couple of them have different, just different things with them that I know I personally don’t want to do an injectable again. I’ve already done two. There is a newer monthly injectable, which I have considered. But in the small print, again, if you are a cancer survivor, if there’s a link to that, that won’t be an option. So, I can kind of, you know, pick and choose that way.