Wednesday, February 17, 2016

Sickness and (mental) health

Getting disability benefits from Social Security is a notoriously tedious, drawn out process. So it was with great surprise and tremendous gratitude to Hashem that I discovered, barely 2 months after starting my application, that I have already been approved and my first payment is in the bank! The first payment from my employer’s long term disability plan also went out today. Between the two of them, I will not only have enough money to pay the bills, but even little extra so I can enjoy the occasional leisure activity without feeling guilty. Baruch Hashem!!!

I had an interesting realization yesterday. I’ve been handling all these medical issues and major life changes remarkably well, and have felt particularly calm since December when I found out that I was approved for long term disability benefits. I have somehow learned to accept the physical limitations and medical uncertainty, and just roll with things as they happen. It occurred to me yesterday, that I don’t know if I could have achieved the same level of emotional well-being if I hadn’t gotten sick. Since I was a teenager, the idea of getting sick and becoming disabled has been my biggest nightmare. I always lived with a certain degree of fear for the future and anxiety about my health. I also had a lot of frustration over how difficult it was to manage my medical issues while also holding down a job and trying to pay the bills. It often felt very unfair to have to push through these daily living tasks that seemed at least twice as hard and took so much out of me.

Now, however, the nightmare has come true: my health has deteriorated, and I can no longer work full-time and support myself. And instead of being terrible and tragic, it’s just… fine. This enormous fear that loomed over me for decades has been revealed as being completely manageable, and I’ve found that life can be full and meaningful even if I’m less-able. If I hadn’t gotten sick, I would still be living with that monster under the bed, waiting for it to jump out and grab me. Instead, I have a renewed faith that everything will be ok, and that I can manage whatever life throws at me. Additionally, I no longer have to force my body into overtaxing tasks in order to support myself. For the first time in forever, I can just BE, listening to my body and taking care of myself without worrying about other responsibilities. It’s so wonderful to finally have a break.

In a bizarre twist, being sick has finally allowed me to have peace of mind. Who knew?

Monday, February 1, 2016

Homeward bound!

And the verdict is: Discharge!

Thankfully last night was far easier. I still had reflux and wasn’t able to tolerate my full overnight tube feeding, but I wasn’t nauseous like the day before. We’re finishing up some meds and labwork now, and in a few hours I will be a free woman!

I fully expect to be a mess for a few days post-discharge. Returning from the hospital is always a shock to my system, particularly considering I haven’t had any semblance of a decent night’s sleep in over a week. I should be fine after a few days of hibernation, and then it’s back to work rebuilding my stamina and maintaining my lung function. Maybe I’ll even go out for a meal on Shabbos!

Thank you all so much for your support and well wishes. Even though I couldn’t necessarily respond to everyone individually, I saw them all and they made me smile!

Sunday, January 31, 2016

Setback

Everything has been going so well, far better than anyone anticipated when I was admitted over a week ago. Until last night. After a miserable, restless, reflux-filled night, I unexpectedly vomited this morning. I needed anti-nausea meds to settle things down, and my stomach was twitchy the rest of the day. No clue where that came from, however my doctor is hesitant to discharge me if there’s any question whether I’ll be able to stay hydrated once off the IVs. So, tonight is the test. If all goes well, and today was just a random fluke, I could be discharged tomorrow – however, if I continue having problems, I’ll be here until it’s resolved. What an annoying thing to keep me trapped here!

Saturday, January 30, 2016

Seriously?

Nothing like being asked by your nurse, "So Cystic Fibrosis, were you born with that?" to inspire confidence. Especially when shortly afterwards I had to explain my antibiotic infusion schedule and tell her how to run them.

(I'd tolerate it better if there hadn't already been similar educate-the-staff moments with at least 3 other nurses. I shudder to think what my care would be like if I wasn't functional, knowledgeable, and coherent.)

Wednesday, January 27, 2016

Overachiever

First walk without supplemental oxygen! I also met the other CF patient doing the CF Shuffle down the hall at the same time. I lapped her though, because I'm an overachiever. 

Pole People

The Pole People have arrived! Because an IV pole is just an empty canvas awaiting decoration. 







Tuesday, January 26, 2016

Plugs and positivity

Friend: I love your positivity

Me: Well it's easy to be positive when you have a beautiful plug to look at