3/28/17

NIH: Part II

Good morning. 5:30. I'm awake and here with your daily (ha) NIH update. I'm currently waiting for the blood stick to fully draw me from my half conscious state and back into the world. My room is empty and quiet, a welcome departure from the city hospitals, where privacy and sleep are nearly impossible.

I still can't sleep here, but that's not the hospital's fault.

I did some decorating yesterday, a lame excuse to buy all the dumb stuff at the gift shop I'm sure my parents would refuse me when they come. Take, for instance, this doll of Teddy Roosevelt. I mean, which other hospital could possibly sell a tribute to our 26th president? Not Mount Sinai, that's for sure.

It's only my second day here but I promised updates and though they may be as dry as the four graham crackers I just shoved in my mouth, hang in there.

On Sunday, I said goodbye to my girls and headed to Metropark, bound for DC.

I barely made it off the train in time due to an ill-advised moment of Instagram stalking. I I basically crowd surfed above an angry mob toward my suitcase, just in time to stand clear of the closing doors and enter the gorgeous Union Station.

I got into a Lyft with a deaf driver who did not appreciate my attempts to finger spell direction and finally texted me to stop trying to use ASL. I responded with my newest sign: bullshit. JK grandma!

I made it to the National Institutes of Health after a thorough security check and settled into a far off wing they'd resuciatated for patients after a water main break. I was thrilled when they called it the Ebola unit because that meant no roommates for me. And since my last roommate was fond of crapping the bed literally every 45 minutes, I gazed upon the empty bed next to me with teary eyes.

So: why the f am I here again? Didn't I spend most of February in the hospital, not losing weight despite vomiting everything? Aren't I amazing about not being bitter motheruckingsonofabitchskinnybastards

I came down to begin a drug called ruxolitinib. Thie drug has recently been used in a handful of patients with my STAT1 genetic mutation. The hope is the drug stops some of the mouth sores, the infections and the general malaise and fatigue that awaits me every day. It'd prevent aneurysms and generally save me for a bit. Sadly, it would not rid me of Type 1 Disease. That bish is here to stay. Dammit.

Unfortunately, for the last few weeks, I've had extreme jaw and mouth pain. Yesterday I saw the dental clinic. The doctors there decided I need IV antibiotics and the experimental treatment I traveled here for will have to wait until my mouth heals.

This means that my two week stay may be more of a three week stay which a huge bummer because I'm on day 2 and I've already anger colored all my coloring books in a manner in which suggests I need occupational therapy.

So the plan is to get a line in today and go from there. I'll also meet with pre-anesthesia and tomorrow they'll Michael Jackson dose me while they pull my last remaining teeth left.

In the mean time, thanks for the love! 

Love you all, in vary degrees of appropriateness.

PS: many of you have asked for my NIH address:
NIH address: Kelly Bergin National Institutes of Health 9000 Rockville Pike Hatfield Building , Unit 5NE, Room 5-2412 Bethesda, MD 20892

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