Thursday, September 13, 2012


I'm kind of delirious right now due to pain, lack of sleep and general malaise, but I remembered something:

Sometimes I get so wrapped up in my own personal world that I forget that great call of duty to express the tiny scrap of knowledge I've gained in this hard-knock-life.

Mini Update:

-- been in the process of applying for disability since June & still waiting...

-- aged out of my Mom's health coverage in May, have been uninsured for almost 4 months. (feeling very grateful to have had it at all.)

-- have since waged a mostly failing (and flailing, at times) battle with NY public health services, HHC, SSA, ETC ETC.

-- illness is a full time job, my friends, and I've been killing myself just to support myself. The American Healthcare System is beautiful in that way! It's a mystical paradox that, with a little bit of faith, we can all buy into. Just like... oh shit.

-- due to no insurance, I stopped my chronic pain regimen. plus: clear head. minus: pain.

-- been to the ER several times in the last few months due to ongoing medical issues that I KNOW are symptoms of my body fighting something... been dismissed just as many times.

-- as a last ditch effort for help, went to the ER a few days ago and dramatically exaggerated my symptoms: crying, coughing up a storm, limping, gasping for breath, clutching my side. All real symptoms & reactions, mind you, but normally I'd hide them and stay classy.

-- FUCKING FINALLY they give me a chest x-ray. I wanted to bow down to the tall nordic resident physician who suggested it and kiss his shoe in a gesture of gratitude, but that would've been icky.

-- I have a softball sized "thing" in my chest cavity that is "probably a hernia" but "might be a tumor". As we all know by now, this means "probably tumor but I probably shouldn't tell you that".

-- CT scan scheduled for next Thursday, and I will know more then. How much is a CT scan, exactly? Just add it to my tab.

In Conclusion: I will be posting more soon & I might regret publishing this in the morning.


Anonymous said...

I've been reading your blog for a while now & I just want to let you know that I think you're awesome.

I also live in NYC. I know how shitty it is not having health insurance, especially when dealing with a major health issue. It took over four months to get diagnosed with NHL and by that point, I was practically on my death bed. No one takes you seriously, no one thinks anything is wrong if you're young. Hope to never step foot into a certain hospital that starts with a "B" and ends with "vue" ever again.

I'll keep you in my thoughts <3

Anonymous said...

Any news on the CT findings?

Wishing you health and strength.

Anonymous said...

Is there any news? I always read you, want to know. I wish it was nothing, and the pain gone (sorry about my english)

Anonymous said...

crap. when you have a second, please share your CT results.
crossing my fingers for you...

John's Brain said...

I did miss your posts, keep writing.

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Katie said...

Hey Kaylin,
Im reading some of your older journals so maybe this advice is no longee needed, but I figured it couldnt hurt to write it anyways, right? ;)

As far as disability goes, almost everyone gets turned down the first time but fear not - re-apply and you'll most likely get approved the 2nd time. (Happened that way for me & almoat everyone I know). If by chance you do get turned down a 2nd time, its totally worth getting a disability lawyer to fight for you. Most work on commision so you dont have to worry about not beibg able to pay for them, they dont get paid unless you do. The most important part is that you are pursuing disability!! :) So many YA's dont even realize this is a posibility. Best of luck with everything!!! :)

By now you've probably already realized that CT ran about $3000 (or at least ours here in MI do). I totally hear you on the useless ER trips though. I spent an entire summer a couple years back going every 2 weeks for oxygen because I was so short of breath, there was never any follow up rules, just "oh, you look better, now go home!"Finally a friend w/ lung cancer suggested her lung Dr in town & he ran a pulm function test & found out that my lungs work fine, but the muscles surrounding them only work 50%, hence the shortness of breath. Ive been on oxygen since & was diagnosed with mitochondrial myopathy. Of course, given that my local hospital has no clue what this is (my specialist is 6 hrs away in another state), its funsville every time I have to go into the ER. Lastly of course, there are the Drs who see my age & the list of meds im on and instantly decide that im in the ER drug-seeking; it doesnt help that they most often say " what did they do last time that helped?" & I just want to yell out "you guys are the Drs here!! You went to med school, not me! If I knew what to do, do you really think I would have come here to be scrutinized & patronized?" yet they often leave us with no choice other that to keep returning & hoping that one of "the good docs" is on staff that day. Im sure this all sounds familiar to you! ;)

Keep up with your bad ass self - you rock!! :)
Love & prayers,