Spirit animal

Is this my spirit animal? I saw this video on Facebook with the following (translated) caption:

"Even if you are at your worst with a single feather in your butt, naked and with nothing to do... Just be happy and enjoy life, because it passes too fast... "  Hopefully I still have more than a single feather in my butt though! 

Hanging in there

The good news is, I’m not in the hospital. The bad news is, the only reason I’m not in the hospital is that we’re not convinced it’ll do much good. The last few times I’ve been on IV antibiotics, I couldn’t maintain the improvement and tanked again a few weeks later. A few weeks of improvement isn’t really worth all the effort of being hospitalized and going through 3 weeks of IV antibiotics. On the other hand, my numbers have continued to slide and I’m feeling pretty awful now, so maybe it is time for a “tune up.” For now we started me on an oral antibiotic and a nebulized steroid, and I’ll go back for a follow up in 3 weeks.

Daily life is pretty difficult right now, since I’m very tired and get out of breath with just about any exertion. The funny thing is, I keep hearing from people that I LOOK great, so I guess at least I have that going for me. It’s actually a good lesson in not judging based on appearances, since we can’t necessarily tell what’s really going on beneath the surface.

I started doing some exercise at pulmonary rehab, and learned that I’m embarrassingly weak. I did about 10 minutes on the lowest setting on a seated elliptical, which was ok, but then I did 4 minutes on an arm pedal exerciser and discovered that my arms get tired very easily. I also had a PT assessment and she identified some weaknesses in my legs. Next week I will start doing exercises with the respiratory therapist AND the physical therapist at every session, so that should be exhausting. But hopefully it will be helpful!

En garde!

So this happened last weekend. I'm in the blue dress. I about died afterwards from the exertion, but it was 100% worth it! The referee was not thrilled that we kept going into fencing mode despite the strict "no stabbing" rule. You can take the girl out of fencing class, but you can't take fencing class out of the girl!

Rehab and prednisone and port consults, oh my

They tried to make me go to rehab, but I said… ugh, FINE.

(For my friends who are too frum for that reference, it’s from an Amy Winehouse song. Actual lyrics: “They tried to make me go to rehab, but I said no, no, no.” Fortunately I’m a bit more proactive about my health than Amy Winehouse, who died from alcohol poisoning in 2011.)

I had my first pulmonary rehab appointment yesterday. Sessions are about 2 hours each, 2-3 times per week. I’ll be doing a carefully crafted routine of aerobic and strength training exercises to improve my endurance and lung functioning, under the guidance and supervision of respiratory and physical therapists. I’m not particularly looking forward to this, but it would be nice to be able to manage everyday tasks a little more easily. Here’s hoping!

Overall things have been less than stellar since my last update. I went back on Prednisone, but this time it didn’t seem to have much of an impact, which was disappointing. The last couple weeks have been particularly difficult, as I’ve been very fatigued and short of breath. IV antibiotics have been mentioned as a possibility. On Monday I have pulmonary function testing and see my CF doctor, so we’ll see how that goes.

I’ve also been having lots of appointments lately, which is tedious. We’re still trying to figure out what to do about putting in a port. Due to my clot history, hematology recommended that I take a low dose of blood thinners as long as a port is in place. I’m pretty sure my CF doctors aren’t entirely thrilled with that plan, and truthfully neither am I. This is complicated by the fact that I have random episodes a few to several times a year where I cough up blood or blood-stained mucus. That has been happening since I was a kid, and episodes are usually slight and/or brief. Occasionally, however, they get a little more dramatic, and I had one of those a few weeks ago. I’ve also had multiple mild to moderate episodes just in the last few weeks, which is unusual for me. So there’s a little extra anxiety about going on blood thinners right now, since I’m already having bleeding issues. Good times.

Despite all this, I enjoyed the Jewish holidays, and managed not to pick up any respiratory infections while being around loads of people for multiple festive meals. I even danced a little on Simchas Torah. I’ve also continued getting out and about for occasional, random events, such as a Harry Potter trivia night (we ALMOST won!) and the Pennsylvania Renaissance Faire (thanks to kind friends who didn’t mind shlepping me around in a wheelchair). Hopefully pulmonary rehab will improve my energy and stamina so I can have more of these kinds of adventures!