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!

More bureaucracy

This week I learned that Medicare is stupid.

Well, I actually learned that Medicare will not cover in-home IV antibiotics, and instead requires patients to be hospitalized for the duration of treatment. But I think “Medicare is stupid” sums that up fairly accurately. Welcome to bureaucracy: making patients miserable AND wasting exorbitant amounts of money all at the same time!

I will be spending the next 3 months researching Medicare plans and deciding which ones to sign up for by the time I’m eligible in January. Also, I am SO OVER doing massive health insurance research every. Freaking. Year. Especially since there’s a strong possibility that I will end up paying even more money for the privilege of staying alive once I switch over to Medicare. I really need a better hobby.

(I mean the insurance gymnastics, not the staying alive. Staying alive is a good hobby. I plan to do a lot more of that.)

As I mentioned in a previous update, I felt pretty good while hopped up on Prednisone. Sadly, the good times faded pretty fast once I tapered off it. I now have a lovely dry, hacking cough. My endurance is also slipping, and my pulmonary function numbers reflected that. The discussion now is whether to continue pursuing aggressive treatment with limited return, or to see what happens if we back off on the aggressive treatment. There are pretty much 2 possibilities with the latter option: 1) Nothing happens, I continue muddling through at my current functioning level, and we see if I can live with that; or 2) I start slipping even further, which would show that the aggressive treatment is helping to prevent things from getting even worse. I asked my doctor if we could delay this little experiment until after the Jewish holidays, and hop me up on Prednisone in the meantime so I can manage all the traveling and socializing and such. He agreed, so it’s back to the Prednisone life for me! Yay!

The current goal is to somehow make it through being around hoards of people over the course of various holidays without picking up any respiratory infections. Wish me luck!

Eclipse

At least 28 hours on the road. Over 1,300 miles traveled. Nearly 7 hours outside in the scorching summer sun.

2 and a half minutes of totality.

ABSOLUTELY WORTH IT.

There is simply no comparison between seeing a partial eclipse and seeing totality. My reaction to watching the progression of the eclipse was, “This is so cool!” My reaction to totality was, “OH. MY. G-D.” Pictures and video can’t even begin to capture the experience. For one thing, capturing picture or video in low light conditions is extremely tricky, so most don’t accurately convey the colors and lighting involved. But even the most accurate image in the world can’t convey what it’s like to look up and see a black sun hanging in the midafternoon sky.

My mom and I arrived at our chosen viewing location, a large state park with sprawling open fields in Vonore, Tennessee, around 9am. We walked around to see the area before settling under a tree and trying to stay as cool as possible in the sweltering heat. There was an increasingly festive atmosphere as more and more people arrived, along with food trucks and even a live band. Strangers chatted with their new neighbors, comparing travel times and sharing viewing tips. A brother and sister sitting near us had a magnificent telescope, which they happily shared with anyone who was interested. Everyone was excited to share this unique life experience together.

Thanks to the last-minute purchase of a tripod, a telephoto lens for smartphones, and eclipse glasses, I was able to get some great pictures of the eclipse progression. As more and more of the sun was covered, every beam of sunlight turned into a mini-projection of the eclipse, creating dozens of eclipse crescents on the ground where the light shined through the leaves of the trees. As we got closer to totality, the quality of the sunlight changed from white midafternoon brightness to the darker yellow you see before sunset. The temperature began dropping, and the light continued fading, until the last sliver of the sun was finally gone.

Shortly after 2:30pm on what had been a sunny, sweltering August afternoon, the world abruptly sank into twilight, that in-between sort of darkness you see after the sun has gone down but before full night blackness has arrived. And in that twilight sky, the sun was a black hole cut out of the heavens, with a beautiful ring of white light blazing around it. It was an overwhelming and awe-inspiring sight that cannot truly be described.

Unfortunately, my camera setup failed during totality, and I was far more focused on actually experiencing the event than on trying to adjust my camera settings. I also tried to record my surroundings before and during totality, but my camera hiccupped and the video didn’t save properly. However, I was able to record the last sliver of the sun disappearing, which then includes some fantastic audio of everyone’s reactions the moment totality arrived.

It’s easy to take the sun for granted in its endless consistency. It always travels a set course, it always radiates heat, and its appearance always stays within very set parameters. Except during a total eclipse, when everything about the sun is completely backwards. Knowing the scientific reasons behind the eclipse doesn’t change the experience, which feels as though the fundamental laws of nature are being upended. And upending the laws of nature is the very definition of a miracle.

I am beyond thankful for all the things that came together to make it possible for me to experience this. In particular, I am so unbelievably grateful that with all the health problems I’ve been having, my current period of decent health came at exactly the right time to allow me to trek across the country for this incredible life experience.

Baruch atah Hashem Elokeynu melech haolam shehecheyanu v'kiyimanu vihigiyanu lazman hazeh.

Blessed are You, L-rd our G d, King of the Universe, who has granted us life, sustained us and enabled us to reach this occasion.

Progress and fun plans!

Yay steroids!

After a couple weeks on a lot of Prednisone, I’m feeling much better and my numbers are back to baseline. Since I’ve been on a higher dose for longer than usual, my doctor wants me to taper off very slowly to reduce the chance of reacting negatively. So I’ll still be on Prednisone for a few more weeks, and hopefully will continue maintaining my lung function once it’s stopped. Prednisone is notorious for miserable side effects, but it just seems to make me normal: Instead of being hyper, I’m just less fatigued. Instead of being ravenous, I just have an almost normal appetite for a change. I think Prednisone kinda works for me! Too bad long term steroid use isn’t actually good for you.

They finally removed the PICC line, which was a big relief! We discussed possibly getting a port placed, but first I need to have a consult with hematology to make sure they think it’s safe, given my clot history. I also still need to find a pulmonary rehab, which admittedly I haven’t put much effort into. Though I am GREATLY appreciating the fact that I can mostly walk and manage day to day activities again, I’m still slow and easily winded, and can probably be doing at least somewhat better. Hopefully pulmonary rehab can help me bump things up to the next level.

In the spirit of feeling better, I suddenly decided on Sunday that I want to see the full solar eclipse. Fortunately I come by my crazy honestly, and with minimal effort my mom was persuaded to join me. We somehow managed to score a hotel not too far from the zone of totality, so on Sunday my mom and I will hop in the car and drive to Tennessee for a hastily planned road trip. We can’t remember the last time we took a vacation together, so it should be a fun adventure! Wish us luck!