As you can see, I dropped off posting after the first month of treatment. It's all kind of a blur at this point, but suffice to say this has been three of the hardest months of my life. Just the last couple weeks I've finally started to feel like myself again, and start to pull myself back together after just being in straight up survival mode for most of the summer.
July was not quite as bad as June, but it really did keep on throwing wrench after wrench into the system. Somewhere in there I did a ton of other medical appointments, a few more ER visits (I don't even know how many there were in total, I lost count somewhere - but trust me it was TOO MANY), a CT angiography (with contrast, to make sure the new secondary pain wasn't something vascular), somewhere in there Bruno and I both came down with the flu (as in actual influenza, WTF?!) in between one of the infusions, and my GI system and head both just took such a beating that they're still far from normal right now. But by around the end of July, the aseptic meningitis finally went mostly away, though it still spikes back up after each infusion. And the secondary pain and pressure in the side of my head improved a little bit but unfortunately it's continued to linger and come back when triggered by various things. I haven't had a lot of luck getting it assessed yet - turns out getting the Big Diagnosis doesn't instantly make doctors start listening to you and taking your new issues seriously. My weight bottomed out at a terrifying 82 lbs, after my swallowing function went offline for 5 entire days before I was able to get steroids and IV fluids through the ER and get it working again. And these are just the big highlights. It's been a legitimate shit show, both literally and figuratively.
Looking back, it's hard to believe I went through all of this, but I did. We did. Ever thankful for the support I've had from Bruno through it all. I know it hasn't been an easy time for him either. We had some offers of help from friends, but only really said yes a couple times when in the midst of the chaos. We have been so deep in survival mode that we haven't even had the time or energy to really figure out how to let people help us more. Something very much on the agenda for the near future.
Status of symptoms
- Malabsorption and diarrhea
- My weight (I bottomed out -9 lbs from where I started, and am now at about -7)
- Weakness and deconditioning just from being so sick the first couple months
- Dryness/sicca - not sure why this is, but it does seem to flare with my swallowing, which got really bad a few weeks ago
Things that got better on steroids but then regressed off them:
- Chronic hives (delayed pressure urticaria + dermatographia)
- Joint pain and tendonitis (it's not quite as bad as before but still regressing)
- Respiratory issues
- Gyne issues (various, both chronic and around period)
- Orthostatic intolerance symptoms
- Joint pain
- Voice strength
- Eyes (light sensitivity and blurred vision from pupils not constricting)
- Vestibular issues (both hearing and balance, though they're regressing slightly off steroids)
- Muscle weakness
- Allergies (no hayfever this summer?!)
Things that are about the same:
- Stomach/GI motility
- Colon/bowel motility
- Hair loss on lower legs + feet (I think it might be just starting to grow back?)
- Bladder (really mild/occasional retention)
- Tachycardia spikes + Blood pressure, especially in the heat
New issues/side effects:
- Still have this bloody secondary head pain/pressure that started during loading dose when I was getting saline. I have my suspicions as to what's going on, but haven't been successful getting this assessed more seriously. It's more of an annoyance than debilitating, so I'm going to see how it goes for a while.
- Post-infusion side effects, especially severe head pain (that likes to turn into aseptic menigitis), and fluiness (body and joint aches, mild fever, just feeling horrid)
- Intense deconditioning, weakness, weight loss
I truly hope the worst is behind me, but if there's anything I've learned about both this treatment and this illness, it's that they are EXTREMELY UNPREDICTABLE. And that doesn't really change with time. Anything can happen at any moment, and there's really no preparing for it, so we've gotten a lot better at rolling with the punches...and they do feel like punches.
What I do know, is I just had my first 3 month treatment follow up with my neurologist, and I've been signed up for six more months of treatment (yay? yay!), but that we're going to try going to every 3 weeks now (instead of 2). The hope is that it'll give me more time to recover and be a person in between infusions. Of course, this is assuming I maintain progress with less frequent treatments. I'm taking this as a promotion, since I don't think they could have been spread out if I wasn't responding well.
And I have been responding pretty well especially for this early on, it's a slow treatment - but I'm also still having pretty severe side effects, despite taking a bunch of measures to mitigate them. We're adding some more meds - both to deal with side effects, as well as my more pesky and persistent issues, and it's all very slow and arduous tapering onto them, seeing how it goes, adjusting etc.
I'm feeling a lot more okay and stable in between infusions now, rather than just full on horrible the entire time, but I still lose about 5-7 days every treatment round until the immune response passes. It's basically like having the flu and an intolerably severe migraine (sometimes to the point where going on steroids or to the ER for treatment is required) every second week, and now every third week thank goodness, if all goes well.
It's a VERY slow endeavour - I'm glad I've even seen any improvement already, as the nerves all take time to regrow and recover. And I think my expectations have settled into a healthy middle ground. While it would be great if this made me "healthy" again, I understand now that is incredibly unlikely. But what I can hope for is that between IVIG and a plethora of other medications to manage the damage it can't undo, there's a good chance I'll become a somewhat functional person again.
My neurologist (who has continued to be an absolute gem) believes one day I'll be able to work at least part time and travel again, even if not to the extent of a healthy person. She gave me homework to focus on regaining my weight and strength, and also think more specifically about what's most important to me in life, and what the barriers are to those things. Then she can help me troubleshoot those barriers and improve my quality of life as best is possible. And aside from staying alive, isn't that what it's all about?
Ever sick as fuck, ever hopeful as fuck. Taking it a month, a week, a day, an hour at a time...
And don't worry if I post updates less frequently - between juggling everything and still being quite sick, and my hand pain returning, it took me
nearly a month two freaking months to write this all out. But I'm going to try and check in quarterly, or so to update progress for those who might be following along, and so I have it to look back on myself! So, till next time...wish me luck!
ps. Public comments have been disabled. (If you know me, you'll know a way to respond!)
pps. My spellcheck is broken, so sue me.