Battle Symphony

My current fight song:

If I fall, get knocked down

Pick myself up off the ground

If I fall, get knocked down

Pick myself up off the ground

When they turn down the lights

I hear my battle symphony
All the world in front of me
If my armor breaks
I'll fuse it back together
Battle symphony
Please just don’t give up on me
And my eyes are wide awake
For my battle symphony
For my battle symphony

Living the Prednisone Life

Three weeks ago I finally got off Prednisone for the first time in 5 months. We spent weeks reducing it verrry slowly, and were surprised that I mostly held it together even once we got the dose all the way down to 2.5mg every other day. I was very relieved to have the Prednisone side effects fade, and was hopeful that maybe I could get by without it for a little while. Unfortunately, “a little while” turned out to be about a week and a half, when I noticed that my airways were more irritated and I was more fatigued. I started having coughing fits again, at times my oxygen would dip with exertion, and I had a few random low-grade fevers. It was unclear how much was due to allergies and how much was CF related, but something clearly wasn’t right. I reached out to my doctor, and on Tuesday I resumed taking 10mg of Prednisone a day. That didn’t seem to have much impact, however, so Friday we bumped me up to 40mg. I’m still not 100%, but the higher dose is definitely helping, B”H.

I just finished 3 days at 40mg, and as long as I continue feeling better the plan is to drop the dose by 10mg every 3 days until I get to 20mg. At that point we’ll probably slow the taper as we gradually bring me down to a long-term maintenance dose, hopefully not more than 5mg a day. I really wish I could choose my Prednisone side effects. I appreciate having more energy, the increased appetite is good for me, and of course the whole breathing thing is nice. But it also disrupts my sleep and makes me painfully bloated, so that’s a bummer. I’m not thrilled that I’ll probably have to be on Prednisone pretty much permanently, but hopefully I’ll be able to function with a low enough dose that the negative side effects won’t be too bothersome.

Fortunately, I actually got a few good months in this time before slipping, and I tried my best to get out and about and enjoy myself while I could. Hopefully we’ll be able to pull me back together with just Prednisone this time and I can continue adventuring for at least part of the summer!

Anticipated adventures and unwanted surprises

Over 7 months ago I scored an access code to buy first-run tickets for Harry Potter and the Cursed Child on Broadway. I worried about making plans so far ahead, as I can never predict what my health will look like, but figured I’d easily find someone to buy my ticket if I ended up being unable go. This past Sunday, right in the midst of an unusual stretch of good health, I had my Harry Potter adventure! I am SO grateful to Hashem for giving me good health at just the right time!

My enthusiasm was marred, however, by the fact that Katherine unexpectedly ended up in the ER and had her appendix removed on Shabbos. B”H they got it out before it ruptured, so the surgery was relatively easy and she is expected to recover well. There was definite hashgacha involved, as it was my concern and prompting that finally convinced her to go to the hospital. Without me she very likely would have tried to wait it out longer – and the doctor said it was one of the most severe cases he’s seen, and if she had waited just 24 hours more, she could have died! Instead, she had a successful surgery, and was discharged the next day. B”H!

(I let her know she’s very lucky she didn’t die, because if she died I would’ve killed her. Ha.)

Since I couldn’t drive or answer the phone on Shabbos, I had to wait helplessly all afternoon for someone to come back and tell me what was going on. It was awful! I’m grateful to the Adlers for providing hours of needed distraction over Shabbos lunch, and to my mom for being amazing and not only taking Katherine to the hospital, but staying until the surgery was done so she could come back and tell me exactly what happened. My mom is pretty much the best person to have with you in a medical emergency, and both Katherine and I are so grateful for the advocacy and support she provided!

It was interesting being on the other side of the medical equation for a change. And it absolutely sucked being completely unable to do anything because of Shabbos! After Shabbos I ran over with various supplies -- including, of course, Pole People! I was all set to stay home with Katherine on Sunday, but she was ADAMANT that I MUST go to Harry Potter and that I MUST have fun, and that she would be completely miserable if I stayed home on her behalf. So, I went, and I did have fun, even though I was sad that she didn’t get to enjoy the experience with us. It’s pretty ironic that after months of worrying whether I’d be healthy enough to go, SHE was the one with the medical emergency! Never once did we consider THAT possibility. We’ll just have to make it up another time -- hopefully without medical drama from EITHER of us next time around!