Back to the hospital

My lung functions have been hovering on the borderline for the last month or so, but I've been hanging on. This week, however, I seem to have come down with something, and that pushed me right over the edge. My oxygen level and spirometry numbers are down, and the slightest exertion has me panting. What with snowpocalypse coming, my doctor doesn't want to risk having things go downhill after I'm snowed in, so this afternoon I'll be off to Presbyterian Medical Center in Philly for a "tune up." Fortunately I don’t feel anywhere near as terrible as I did back in 2014, so hopefully it will be a much easier hospitalization and recovery.

I’m honestly not surprised. I’ve been averaging a “tune up” about every 6 months lately, so I’ve been waiting for the next round back in the boxing ring with CF. It would’ve been nice if wasn’t the one and only weekend when absolutely no one will be able to visit me though. I’m also super disappointed to miss out on Panoply with my awesome team! I suppose breathing comes first though.

One of my NCSY advisors (you know who you are!) used to love the analogy of life as an EKG. The EKG is made of ups and downs, and you need both of them to live. My good news last month was an up, and now I’m in a down, and hopefully soon will be yet another up. B”H that I have the zechus of being here to keep experiencing both the ups and the downs!

Baruch Hashem!

הודו לה' כי טוב, כי לעולם חסדו!

Give praise to Hashem because He is good, His kindness is forever!

Just a few days after my last update, and after months of worrying, I finally got a call from my employer’s long-term disability provider. And B”H, all they need now is some financial information to determine my benefit amount, and it’ll be ready to go! I have no clue how much I’ll be getting each month, but I don’t even care, because something is way better than nothing! I can’t even describe how grateful and relived I am!!!

Bureaucracy and manna

I haven’t posted an “update” in a while, because there hasn’t been much to say. My health has been relatively stable; some days are better, some worse, but overall things have been mostly manageable. The main focus of the last 4 months has been dealing with endless forms, phone calls, and bureaucracy while trying to get various benefits squared away. I’m working with a (free) lawyer through the Cystic Fibrosis Social Security Project, so it took a while for them to obtain and review my medical records and decide on a course of action. Medicaid also took a stupidly long time to come together, and in the meantime Cobra and copays have sucked my savings dry. It feels like I’ve been spinning my wheels for months, with no choice but to wait for other people to make decisions about my life. Not exactly fun.

Finally, however, things are starting to come together. As of this month I’m back on Medicaid, and I finally started my Social Security application. It takes about 6 months for Social Security to make a decision, and there’s every possibility that I’ll then have to go through the denial and appeals process to make it even longer. But at least the journey has finally begun!

The current stressor, aside from reams of paperwork, is that my short-term disability from the state is due to run out by February. I still haven’t gotten a determination on my long-term disability claim with my employer, and there’s a chance it will be denied due to a pre-existing condition clause. So I’m preparing myself to go from “poor” to “destitute” within the next couple months, while also hoping that things come together.

It kinda feels like the Jews in the desert, who had to rely on Hashem to provide for their daily needs. Every day they received only the exact portion of manna that they needed for that day, and they had to trust that Hashem would provide what they needed again the next day, and the next, and all the days after that. For the last several months, it feels as though Hashem has been providing my exact portions as I need them, and no more than that. It has been extremely difficult for me to completely relinquish control, and to accept that most of the time there is very little I can actually do to prepare and plan for the future. Perhaps that is the lesson I’m supposed to be learning: that all my efforts and plans and the strength of my own hands is nothing but an illusion, and all we ever receive is that which Hashem gives us.

I’ll try to be a good student.

Grow

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New day

The start of a new day. A moment of unfulfilled promise and unfolding opportunity. Blinking eyes, a yawn, a stretch – perhaps a delay of “just a few more minutes” – but finally, inevitably, the stagnant comfort of sleep is left behind for another day of activity and purpose.

The close of a long day. A winding down, a recovery, a time to regroup and recover. A chance to lay down tasks and responsibilities and slip into unthinking comfort. A reward for the day’s efforts, and a chance to prepare for the next new beginning.

Two slavering hellhounds bracketing each day.

There is no ease in waking. Sleep brings blissful unawareness of the disease mercilessly ravaging my body. A host of symptoms escort my wakening, all clamoring for attention, and the day cannot begin until their needs are met. So I remain in bed, pretending to sleep, willing my existence out of existence for just a few more minutes – until, at last, my existence can no longer be avoided. Thus begins another day.

And then, at the close, there is no unthinking collapse into slumber’s sweet embrace. Oh, it would be so easy to drop the burden of self-care and be a normal human being for one night. But the consequences prey on my mind, leave me no peace, demand compliance with lengthy and uncomfortable treatments. So once again, I lay in bed, pretending I’m not yet ready for sleep, avoiding the reminders of my body’s weakness, until I can no longer pretend and finally force myself into the prison of my evening routine.

A bitter pill
Against my will
Until the day
When sleep will stay.

Asthma

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What's your theme song?

I really identify with Five for Fighting’s song “Superman.”

It may sound absurd...but don’t be naive
Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me

Since childhood, over and over again, I've heard people say how wonderful I am. I’m so strong, I’m so brave, I’m so inspiring. But guess what? I didn’t sign up for this gig. I didn’t want to be any of those things. I just wanted to be. I didn’t get a choice though, because if I wasn’t those things, this illness would have taken me long ago. So I'll continue being those things, in order to cling to whatever this world will let me have.

But I never wanted to be a hero. Remember that.