Originally, this post was going to be about how getting bad medical news doesn't really faze me anymore. But in a matter of days, that statement became less true.
Last week, I had an MRI and was expecting good results since I wasn't really experiencing any new or worsening symptoms. (Other than
the throwing stuff thing, I guess.) The MRI wasn't terrible but it also wasn't good. There were 5-6 new lesions (or maybe more but they just got a new more detailed machine so some of the maybe-new lesions might have just been old ones that the other machine wasn't good enough to pick up). This is not normal for me while on Tysabri. When off it, I have allllll kinds of new lesions and the old ones get bigger but when on it, my MRIs are usually great.
This was bummer news (I've had more than one MRI with 25+ new lesions, so 5-6 felt like no biggie) but I didn't get upset hearing it. In fact, I spent the entire rest of the day kicking myself for not responding to the doctor with some sweet (or awful) brain puns. Like:
Doc: So, there's 2 new lesions right here in the pons.
Me, in reality: Okay.
Wish I'd said: Okay, could you maybe pontificate about that a bit?
Doc: Another new lesion here in the right frontal lobe.
Me, in reality: Okay.
Wish I'd said: Right, I'd lobe it if you could front me some information about what that means.
Doc: And a couple new ones here in the left parietal lobes.
Me, in reality: Okay.
Wish I'd said: (I couldn't come up with one here. Any ideas?)
Now, none of those are great puns. [Please share brain anatomy puns in the comments, for my future use!] But, instead of bumming out all day that my disease is progressing and my miracle drug is maybe not working as well as it used to, I was doing this playful daydream dance thinking of brain puns.
I can take bad news in stride. I've had a lot of it in the last decade plus. Really terrible MRI reports, drugs not working at all, awful new symptoms, awful side effects, etc. I roll with the punches. I've had very little strong emotional reaction to any health stuff, really, for a long time. Even when I was first diagnosed, there were few tears. The few times I have really lost it, crying and getting angry, have been related to the financial side of being chronically ill like fighting with insurance companies and hospital billing offices and getting denied and things like that. But the disease itself, I'm mostly pretty chill about it all. [Technically, I did have a serious cry earlier this year but that's a story I'll tell in another post that is currently half-written.]
In talking with some friends recently, I said that one of the things this disease has taught me is that I'm okay and I'll be okay no matter what happens. That's not to say I'll be happy if I have new symptoms or further disability or any of that, but I'll be okay. I've experienced not being able to walk. I've experienced incontinence. I've handled that and I can handle whatever else. I'll still be okay. Even with the things that scare me the most that I know could happen with this disease, I'll be okay.
I do stand by that. I will be okay. But...
A few days later, some new stuff started. It's now been 48+ hours later and the new stuff is holding steady and getting a bit worse. One symptom isn't new but has returned with a vengeance: major weakness in my left leg. Another symptom is very new: spasticity and pain in my hip flexors and hamstrings. This is a painful, tight, sore feeling and it is impacting my walking. I'm walking stiffly and I'm told I'm stomping. I haven't tried walking super long distances, only around my house. It's not like I'm tripping or falling or feeling unsafe. (My mom is very worried about tripping and falling and not being safe on stairs and the like, but she worries about that stuff for me already so it's just more urgent right now.) Walking is just weird. It's something I have to think about. It's no longer an unconscious activity that my body just knows how to do.
In other words, I'm having a flare-up/relapse/exacerbation/whatever-you-want-to-call it. This is literally my first ever exacerbation while on Tysabri. Before the drug, I had a dozen or more. Then immediately once I started Tysabri I experienced beautiful disease stability. 7 years of it! Some of the damage was permanent and I dealt with those symptoms, but the disease was stable and there were no new symptoms. Then, off the drug and tried 2 new drugs (Gilenya and Aubagio) and they were both disasters for me. Exacerbations and TONS of new awful disease activity. Then, back on Tysabri and everything cleared up right away. The MRI was perfect again. And almost a year of no new stuff. But now here we are.
And I am okay. But also I'm not at all okay. I sobbed today, a full-on ugly cry.That's something I mostly only do when a beloved tv character dies or a true story sports movie coach gives an inspiring speech or something tragic or beautiful happens in a book. But today, I sobbed.
I cried because the timing for this is beyond awful. I have a big (physically and mentally demanding) concert next week with lots of rehearsals and driving. It's a concert I've been looking forward to for a long time and I refuse to not do it. But...I worry about what if things get worse? What if my left arm gets weak again or what if my face is numb and I can't play?
I cried because I'm worried that my wonder drug isn't working for me anymore. And I don't like the sounds of any of my few remaining options. And I don't want to have to make that kind of impossible decision.
I cried because this trouble with my walking made me realize once again that I've taken for granted the beautiful, precious gift that walking without thought is. It's something I reflected on a lot in the past when I had walking issues (admittedly far worse than what I'm experiencing right now) and I vowed to always feel grateful for the gift of walking. And I haven't been taking advantage of using my body in the ways it could be used of late. I haven't been taking walks or done much other physical activity. There are plenty of good reasons why I haven't done much of this, namely the fact that walking and standing and exertion, without fail, make my pain significantly worse. But still, I enjoy walking and I want to use my body when I can! Why haven't I been? Why haven't I been hiking in Colorado (my favorite activity in my favorite place!) in over 5 years? What if I missed my last window of being able to do things like that?
I cried because I already have pain every single day, sometimes mild and sometimes severe. Adding more pain? Constant pain is soul-crushing but I eventually learned to be okay with pain, especially after finding ways to manage it. But adding a new, different layer to the pain is depressing and overwhelming. And soul-crushing.
I cried because I worry that I might be on the cusp of transitioning to the progressive form of the disease where things don't get better in between exacerbations. And it's just a decline.
I cried because I guess I'm not quite as immune to bad news as I thought.
But I wiped my tears. And I'm okay. I can handle this. I can hope for the best. I can feel gratitude for what I can still do. I can promise myself to use my body as best I can when I can in a way that I won't regret not doing in the future.
I have to get a new MRI (brain + cervical spine + thoracic spine...I only did brain last week and these symptoms are probably suggestive of spinal lesions) and the soonest I could get in is next week. So if I were to do steroids, I'd have to wait until after that. Which is in the middle of symphony week. And there's no way I could do steroids during that. It's a rock-and-a-hard-place situation.
Okay, I'm going to end this long ramble of a post now. I'm okay and I'm not okay...but I'll be okay.
Friends, if you can walk easily and without thought, please take a moment to feel grateful and to celebrate it for the beautiful and precious thing that it is. And if you can run, bike, hike, dance, etc., please do it for those of us who can't. And celebrate the gift of all that your body can do.
❤️
