I got this. Mostly.

That moment when you're so stupidly determined to be independent that you drive yourself to your doctor's appointment, despite being exhausted and out of breath.

Living with CF is…

•  Trying not to trip over or become entangled by various types of tubing and medical equipment as you rush around trying to make yourself presentable before work.
• Actually tripping over tubing and medical equipment on an embarrassingly regular basis.
• Being surprised when people are grossed out by mucus. Doesn’t everyone have an up close and personal relationship with their mucus?
• Occasionally forgetting to cover your mouth when coughing, because you cough so often that you don’t even notice anymore.
• Rolling your eyes when people dart nervous glances in your direction and edge away at the sound of your cough.
• Ditto when people do the same at the sight of a medical mask covering your face. This is for my protection, buddy, not yours.
• “I’m having a bad air day.”
• Being able to eat whatever you want without worrying about your weight (at least until CFRD strikes).
• Sitting on the ground hacking up mass quantities of blood and trying desperately to catch your breath, then reassuring a concerned police officer that you’ll be fine and he doesn’t need to call an ambulance.
• Your special someone saying, “You need to hydrate, you taste salty.”
• Packing a bag before going to a doctor’s appointment, because you just know you’re about to be admitted.
• “I can’t breathe. Why can’t I breathe…? OH, right.” *puts nasal canula back in*
• Feeling a sickening jerk inside your stomach when the feeding tube unexpectedly gets caught on something, and wondering if that’s what a Portkey feels like. (http://harrypotter.wikia.com/wiki/Portkey)
• Having disheartening familiarity with gastric juices due to feeding tube malfunctions.
• Waking up in a cold, sticky puddle of nutritional supplement, and realizing that the tube accidentally detached during your overnight feeding. Again.
• Never knowing when you’re going to stink up a bathroom or clog a toilet with your rancid digestive issues. Bonus points for public humiliation.
• “That sounds bad…” “Oh no, I’m fine, this is actually my healthy cough.”

Perspective

I once encountered two very different people on the same day. One was an older single who struggled with the fact that yet another birthday was fast approaching. The other was a young bride anxiously awaiting her upcoming wedding. The single woman could easily look at this bride and feel pain and jealously that she has sought her husband for so long while this young girl found him effortlessly.

But she would be wrong. Because I know something that the older single doesn’t. I know that this young bride suffered the terrible, life-altering trauma of being raped when she was a child. She continues to struggle with the impact of that horrific event, particularly as she approaches her wedding day. Coping with singlehood was not this girl’s struggle. Being raped was.

If you could choose between the struggle of being single and the struggle of being raped, which would you take?

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 “You can eat whatever you want and still stay so thin? You’re SO lucky!”

Maybe. But would it ever occur to you that the reason I stay so thin is because a terrible disease is slowly destroying my body from the inside out? The freedom to eat as much chocolate and ice cream as I want is nice, I will admit… but the price tag is medications, and hospitalizations, and surgeries, just to try and push death off another day. Not to mention the pain and exhaustion that is part of my daily struggle to live the normal life you take for granted. All the ice cream in the world can’t compensate for that.

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Look at your struggles, and be thankful… Be thankful for the struggles that God chose NOT to give you.

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?

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!

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!

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.)