Bed-ridden but trying to get my cardio in for the day by dancing terribly along with Taylor Swift for the next 4:02. Join us!



“Ok, I don’t know who told you pouting was an option for you, but all you’re making me feel right now is hatred for Renée Zellweger” - Dean Pelton on “Community”


I’m making this face because I am in SO much pain right now.
I just hit the three week mark since my 3rd emergency intestinal prolapse surgery, and I don’t think it was successful. Why? Because it wasn’t successful the first two times, and I am now well-versed in the warning signs. The most unfair part about all this is that while I knew this surgery wasn’t going to cure me, I thought it would give me a few good months. It did the first two times I had it. But I haven’t had a single good day since this most recent surgery yet. Maybe I’ll have it tomorrow. 
My stoma is nearly black in color when it should be cherry red. And my stoma is wilting 3-4 inches outside of my body, meaning that the stitches my surgeon sewed to keep my intestine in place 3 weeks ago are already gone.
This is not good. Not good at all, especially since I’m out of pain medicine and I reallllllllllllly don’t want to go to the ER. I rather “sit it out” and pray that “this too shall pass” while I do the above U-GLY cry face in my bed until my post-op appointment with my surgeon… in 18 days. Ya, I realized that’s a bit unrealistic the moment I wrote it. Fudge.
After having four surgeries in the past nine months, I mentally can’t talk shop about having more (and bigger, muuuch bigger) surgeries right now. Nor is my body physically ready to be cut open quite yet. I can’t be in the hospital, again. I need a vacation, from the hospital, from the doctors and their pesky entourage of residents,. I need a vacation from life. I’m about to look up flight tickets to Bora Bora. Who’s with me?

“Ok, I don’t know who told you pouting was an option for you, but all you’re making me feel right now is hatred for Renée Zellweger” - Dean Pelton on “Community”

I’m making this face because I am in SO much pain right now.

I just hit the three week mark since my 3rd emergency intestinal prolapse surgery, and I don’t think it was successful. Why? Because it wasn’t successful the first two times, and I am now well-versed in the warning signs. The most unfair part about all this is that while I knew this surgery wasn’t going to cure me, I thought it would give me a few good months. It did the first two times I had it. But I haven’t had a single good day since this most recent surgery yet. Maybe I’ll have it tomorrow.

My stoma is nearly black in color when it should be cherry red. And my stoma is wilting 3-4 inches outside of my body, meaning that the stitches my surgeon sewed to keep my intestine in place 3 weeks ago are already gone.

This is not good. Not good at all, especially since I’m out of pain medicine and I reallllllllllllly don’t want to go to the ER. I rather “sit it out” and pray that “this too shall pass” while I do the above U-GLY cry face in my bed until my post-op appointment with my surgeon… in 18 days. Ya, I realized that’s a bit unrealistic the moment I wrote it. Fudge.

After having four surgeries in the past nine months, I mentally can’t talk shop about having more (and bigger, muuuch bigger) surgeries right now. Nor is my body physically ready to be cut open quite yet. I can’t be in the hospital, again. I need a vacation, from the hospital, from the doctors and their pesky entourage of residents,. I need a vacation from life. I’m about to look up flight tickets to Bora Bora. Who’s with me?

For what it’s worth: it’s never too late to be whoever you want to be. I hope you live a life you’re proud of, and if you find you’re not, I hope you have the strength to start over again.
F. Scott Fitzgerald (via un-exotic)

(via lifeaccordingtocrohns)

2spoopyparteira:

eviscerator:

This device uses infrared technology to help find veins
How? Well it works in a similar way to pulse oximetry. Haemoglobin in the blood absorbs infrared light. When AccuVein’s device is held above the skin, it can detect the difference in the haemoglobin concentration between the veins and surrounding tissue, projecting a map of the veins on the skin above them. Locating the point of needle placement is suddenly simplified for phlebotomy techniques.
This technique has been used for some time when drawing blood from newborns, but is now becoming more frequently used in adults. Those with particularly difficult venous access (DVA) can include:
The elderly;
Dark-skinned patients, whose veins may not be visible;
Obese patients, whose veins may not be visible or palpable;
Patients having many diagnostic or therapeutic intravenous procedures;
Burn victims;
Agitated or restless patients;
Oncology patients on chemotherapy;
Other patients with chronic diseases;
Drug abusers.

do you know how many jagged prods and ruptured vessels this would save me.
do you.
do you know how tiny my veins are.

2spoopyparteira:

eviscerator:

This device uses infrared technology to help find veins

How? Well it works in a similar way to pulse oximetry. Haemoglobin in the blood absorbs infrared light. When AccuVein’s device is held above the skin, it can detect the difference in the haemoglobin concentration between the veins and surrounding tissue, projecting a map of the veins on the skin above them. Locating the point of needle placement is suddenly simplified for phlebotomy techniques.

This technique has been used for some time when drawing blood from newborns, but is now becoming more frequently used in adults. Those with particularly difficult venous access (DVA) can include:

  • The elderly;
  • Dark-skinned patients, whose veins may not be visible;
  • Obese patients, whose veins may not be visible or palpable;
  • Patients having many diagnostic or therapeutic intravenous procedures;
  • Burn victims;
  • Agitated or restless patients;
  • Oncology patients on chemotherapy;
  • Other patients with chronic diseases;
  • Drug abusers.

do you know how many jagged prods and ruptured vessels this would save me.

do you.

do you know how tiny my veins are.

(via bag-my-business)

The crucial difference between being defined versus being shaped by your illness

The website I freelance fashion and entertainment stories for asked me to write an article about my illness. It would be an “introductory piece” - introducing readers to my illness and self, stripped of my makeup and with my fur coat off. If the response is good, my editor said there’s potential for more.

Writing about my illness on a professional platform is the hardest thing I’ve ever attempted. And yet I know it will be the most rewarding. As all of you know, there’s a cathartic element that comes with writing about your struggles (or re-blogging them in gif form).

Tumblr’s been my diary. I don’t often publicize this account to my friends or family. It’s my place to vent, uncensored to people who “get it” and get what I’m going through. Every “like” translates to “I understand.” You know my pain because you experience it, too. I don’t have to explain it or myself.

Writing on Tumblr is like talking (oddly) to my closest friends, two tequila shots too deep on a Saturday night. To have an article published on a news website is the equivalent of meeting my nonexistent fiance’s in-laws. It has to be proper. It must be right. Tumblr’s always been like the letter I wrote, but never sent to the boy that broke my heart. This article will be signed, sealed, and delivered- to the world and TMZ.

Tears are rolling down my cheeks with every sentence, nay, word I write, and rewrite.

Part of me is screaming- stop! this is too hard. The thought of opening myself and my illness to such a wide audience (over 45 million unique readers since its launch) is daunting.

Part of me doesn’t want the attention; part of me doesn’t want to “go there” again. Retelling the story of your illness not only grows tiresome, it also becomes harder. Wounds are reopened, and not just scar lines. But this article is so much more than just about me or for me. This is for everyone suffering not only from my illness, but all rare illnesses. It’s for and written by all of us.

I’ve written and rewritten my lead countless times now.

Originally I wrote, “Hi, my name is K.C. and I have Chronic Intestinal Pseudo Obstruction disorder.”

That was quickly erased. I have CIPO, but I am NOT CIPO. I don’t want that to be the first thing I put next to my name. If Tumblr’s taught me anything, it’s that we are all so much more than our illnesses. We’re funny. We’re beautiful. We’re food obsessed. Some of us are cat obsessed.

So for now, I have, “Hi, my name is K.C.”

*Big breaths* It’s a good start. 

True story: I delayed rushing to the ER because I refused to leave without my teeth whitening gel

If I’m going to be stuck in a hospital bed getting all nutrition pumped through an IV line for the next week, I might as well come out with a dazzling smile.

buckbarrow:

buckbarrow:

buckbarrow:

i’m home sick with the flu and i just received this email from my father

image

STOP REBLOGGING THIS MY DAD THINKS HE’S SOME INTERNET SENSATION AND HE WON’T SHUT UP ABOUT IT

image

still Hangin with Yo frienz one year later

(via backtothefuchur)

No,” he said in a tone of disapproval as he looked at me and the tears in my eyes as a struggled to drag myself and my IV pole down the hall for the first time out of surgery. “Let’s get you out of that [hospital] gown and into your own pj’s.
My surgeon gets me and my disdain for fugly hospital gowns. #blessed

I underwent emergency surgery, my fourth emergency surgery on my small intestine in the past nine months, a few days ago.

One minute I was sitting on my bedroom floor, in the lotus pose (the one you look like Aladdin on his magic carpet doing), saying “Namaste betches” to myself, trying to get my zen on. Between my small intestine intermittently shutting down and recent news that now my stomach is shutting down and is so enlarged it’s squishing other organs, I could use a little self healing. The next minute, I opened my eyes to see my small intestine came through my ostomy opening and was hanging a good 10-12 inches (for visual learners: the length of a ruler) outside my body. Just chillin. NBD. Naht.

image

(This is when I made the same face as the Olsen on the left. Side note: let’s bring these looks back- jackets, tinted glasses, and hair styles included)

It’s not that I haven’t had this happen to me before- but seeing a vital organ outside of your body never gets any easier. It never get’s less traumatizing. My moment of zen was crushed in that instant and I really don’t remember much more than screaming “GIVE ME MORE PAIN DRUGZ” after that. For the record, I am still leaving my doc sketchy voicemails asking for more of the “good stuff.” I’m not going to lie and say I’m not hurting like hell but at least this is a pain I’ve conquered before and will triumph over again.

My wond-da-ful surgeon at Yale told my family this was by far my worst small bowel prolapse (the fancy term science geeks give for when an ostomy patient’s intestine falls out of his or her body). I’ve already had two surgeries for this very reason earlier this year – one on Christmas Eve and the other the day after Easter. When I have emergent surgeries, I really plan them at ideal moments. Mark your calendars now, my wedding to Ryan Gosling will be on the Apocalypse or when hell freezes over. Dress accordingly.

Both prior intestinal prolapse surgeries were unsuccessful, as I keep having to have them again and again. In brief, my surgeon sews my small intestine back into place with the hope that over time the dissoluble stitches will fall out and scar tissue will build up to keep my small intestine in it’s proper place. But life never goes as planned, and neither did either of these surgeries.

With Vegas odds against me, having gone 0-2 for scar tissue building up after the last two surgeries, we aren’t planning this third time is going to be a charm. That’s not to say we’re not hopeful- we are, but we’re also being realistic. Instead, once these stitches dissolve in a few months I’m most likely going to need a huge surgery to permanently prevent my small intestine from falling back out and from me losing my ability to eat.

I lost about two inches of intestine in my latest surgery, two more than I could afford to lose. If I lose any more, I won’t have enough small intestine left to absorb nutrients. Instead, I will be fed solely through a feeding tube for the rest of my life.

To say this latest surgery came as a shock is an understatement. To say I’m scared about the future is an even grosser one.

Just a month ago we found out that my stomach and small intestine are shutting down and so swollen they are crushing other things, and we are just beginning to look into the HUGE, bionic-like surgeries I may need to fix them. And to now have to deal with this unexpected surgery and the thought that every lick of frozen yogurt could be my last if these stitches unexpectedly fall out and I lose the rest of my intestine - well it’s a bit too much for me to handle right now quite frankly. I can only imagine how hard it must be for my family. We greatly appreciate the many, many prayers and kind thoughts we have received. In an effort to avoid falling a part, I just keep reminding myself that people – so many of you reading this and so many of my friends in the hospital – have it far, far worse than I do. And so, I just have to keep on dancing. On my own, in my bed room or hospital room. And of course, in my night gown (because my nurses know better than try to get me to wear that fugly hospital gown). But I do hope to be dancing on the sticky floors of the Seagrape and Daisy Buchanan’s to Robyn’s “Dancing on my Own” or, more realistically, something fantastically embarrassing from Justin Bieber with you all very soon xx

I hereby pledge to smile every day despite having an ileostomy, feeding tube, and port in my chest. I also state my refusal to wear hospital gowns during my frequent hospitalizations.
Because being sick is not an excuse to be or look anything less than fabulous.

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