Drama free and moving on

You know how some places have those signs, “This workplace has been incident free for x days?” Katherine and I decided that I should have one for bleeding. Current count: 17 days!

Since I’ve managed to stop bleeding and my lungs finally sound clearer, I’m finishing up one last day of IV antibiotics and fluids and then calling it quits for this round. After being on IVs for a full month, I am very much looking forward to freedom and a full night’s sleep! Next task: Getting back to pulmonary rehab and rebuilding my stamina. I’ve been trying to keep somewhat active since the bleeding settled, so hopefully I haven’t deconditioned too much. I’m also hopeful that maybe I’ll manage another few months of relatively good health like I did after the last round of IV antibiotics. Fingers crossed!

One less exciting bit of news is that I’m starting to show side effects from long-term steroid use. A scan showed that my bones are thinning, not quite to the point of osteoporosis, but definitely on the borderline. It’s not a huge deal, but it’s something to be aware of. That should become less of an issue as we slowly taper the Prednisone down, and hopefully I’ll be able to get down to a maintenance dose that’s low enough to have minimal long-term impact. In the meantime, I’ll be starting medication to help rebuild bone density and hopefully prevent osteoporosis.

On the other hand, I also got some unexpectedly good news! Apparently by the end of May I reached the out-of-pocket maximum on my medical benefit, which means medical is now covered at 100% and I no longer have any medical copays (though I still have prescription copays, as the pharmacy benefit has no out of pocket maximum). I was surprised, as I have spent less than half of the $6,700 I was anticipating. It turns out that some of my more expensive specialty medications are covered under the medical benefit instead of the pharmacy benefit, so those copays made a significant dent in my out-of-pocket maximum. Even better, I have a grant that covered those copays, so I didn’t even have to pay them myself! Having my out-of-pocket maximum essentially halved was a HUGE relief and will make the rest of the year MUCH easier. Additionally, I got two other prescription copay assistance programs set up, and my pharmacy expenses finally hit the catastrophic coverage phase, which means that my prescription copays have dropped significantly. Now that I have everything set up, next year should be much smoother financially!

It’s been a difficult summer, but B”H things are finally looking up. Looking forward to getting back on track and hopefully squeezing in a few good months before the next round!

Dance therapy

Who needs pulmonary rehab when you have Dance Dance Revolution? I had to give up after the second round though when my oxygen started dropping. It's a work in progress! Also, we've officially found a game where Katherine wipes the floor with me lol!

Multitasking: CF Edition

That moment when your afternoon IV antibiotic coincides with grocery shopping. Just shooting up in Shoprite, no big deal! #CFLyfe

Endings, Beginnings, and Doctor Who

A fitting way to spend our last night together as roommates: catching me up on the last episode of Doctor Who before the new season starts in the fall. By the time Martelle comes back after the weekend, I should be finished moving upstairs. Martelle and I agreed when we moved in that I would introduce her to Buffy the Vampire Slayer, and she would introduce me to Doctor Who. She finished Buffy ages ago, so it seems particularly appropriate for us to finish catching me up on the Doctor tonight.

It's been an awesome 3+ years, filled with an abundance of hashgacha, laughter, geekery, and good times. I'm so glad that we're simultaneously moving on for the best of reasons, AND that we'll still be living in the same building so there's no real goodbye! Looking forward to continued adventures together!

Enough already!

Oh for %@&#$ sake…

Yesterday I pulled myself together and left the house to run a few brief, low-key errands. I walked slowly in two stores carrying nothing heavier than my purse. I didn’t do anything that should have been overly stressful for my body. But after leaving the second store, before I could make it to my 3^rd and final errand, I suddenly started coughing up blood again. So there I was, sitting in my car in a random parking lot, spitting into a cup, hands and face streaked with blood, praying that no one would notice me and freak out. Fortunately I could tell that it wasn’t going to last long, and 3 minutes and 20 mL later it was over.

You know your life is weird when your first reaction to coughing up blood is to be immediately, over-the-top FURIOUS. If I had the energy or lung capacity I would have been swearing at the top of my lungs. Instead I had to be content with raging inside my head and in my text messages to poor Katherine. Since it was a relatively small bleed, once things settled I was able to clean myself up and drive home, and I did not need to go to the hospital. But now I need to once again hold various treatments to avoid causing further irritation to the wound. And apparently I need to basically put myself on house arrest for the rest of the week until I’m more certain that everything has healed.

I’m not really sure how I’m supposed to move or kasher a kitchen when I can’t even lift anything or leave my apartment. It has been an extremely frustrating month, with no end in sight. I’m usually pretty zen about most of this stuff, but my patience is wearing thin, and I am not a happy camper. Here’s hoping this was my lungs’ last hurrah for this round and that I can get back to my bizarro version of normal life soon.

This patient needs ice cream, STAT!

Funny hospital story: So at HUP, you can’t just order kosher meals. You have to be entered into the system as being on a kosher diet. This isn’t difficult, and my care team put in the order as soon as I asked. HOWEVER, food services then treats this like any other medical diet, and will ONLY send you items on their very specific Kosher Diet list. I’m 90% sure their ice cream cups are kosher, but I couldn’t find out for sure, because food services absolutely refused to send me one since it wasn’t on The List. The dietician tried to intervene on my behalf. My nurse spent ages explaining to them why this was ridiculous. No dice. Finally, however, the beleaguered food services staff said that she could send up ice cream to stock the fridge in the pantry for the whole unit, and then my nurse could “choose whether or not to administer the ice cream to the patient.” We all laughed uproariously at this, and discussed the various ways in which my medically approved ice cream could be administered.

Oh, and after all that, do you think they ever stocked the unit fridge with ice cream? NOPE!

I’m still on IV antibiotics and hydration for at least another week, but I am SO GLAD to be home, in my very comfy bed, with access to a kitchen full of whatever food I want -- INCLUDING ICE CREAM!

Homeward bound!

I'm going home!