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Updated: Jan 23, 2019

May 10, 2016


So….there’s a whole ‘nother blog entry on the drugs I take to manage my Crohn’s…they’re not great...AND...they keep me mainly upright.  But SOMETIMES…..they are a pain in the ass.  One of the drugs is a TNF blocker.  TNF (tumor necrosis factor-alpha-blocker) blockers suppress the immune system by blocking the activity of TNF, a substance in the body that can cause inflammation and lead to immune-system diseases, such as Crohn's disease.  Sounds fun, right!??!   Did I mention it’s injectable and costs $36,000+ per year!??!   YAAAAY!!!

SO…what does this mean?  Well….essentially, it keeps my body from attacking itself -so that’s a WIN, especially when it comes to my insides… also wipes out my immune system, so if I’m lucky enough to get a common cold, or flu, it tends to be more severe, and/or last longer.  Now, for the cherry on top...if my already suppressed immune system gets worn down, then it is extremely easy for an infection to take hold.  I’m now on my second round of facial swelling as a result of a little teensy pimple or rash on my face.  Left unchecked, this can make it’s way to my sinuses and even brain, and can progress to Meningitis.    Of course, traditional oral antibiotics won’t do the trick, so I get hooked up to an IV drip.   And this is about a 2 on the 0-10 fun scale.  

Today is one of those days ….I’m back on an IV antibiotic drip again.   Last time this happened, it was my forehead and eyes that were involved - which was even less attractive that it sounds!   This time it’s my lip and cheek - which looks like a cross between a sultry chipmunk and a dental/cosmetic surgery procedure gone awry!   Hence #theSWELLlife   LOL

So, if you see me around, I’m not giving you the ‘Elvis Hound-Dog’ lip…..that’s just my face!!

And here's another thing.  I probably got to this point because I didn't go to my Dr sooner.   Because I didn't want to be a bother, or seem to be whining or using resources unnecessarily.

And I always try to laugh off or minimize my illness. My mother always gives me hell when I'm in hospital for being ‘too upbeat’.  I get it.  I really do.  If I dont ‘seem’ sick, I may not get the treatment I need, or the situation may not be treated with the gravity it truly needs.   I just think nurses (shout out during Nurses Week!) and Dr’s see and deal with so many really sick, and also nasty patients, I try to be a light in their day.        

 Also, this has earned me good perks? And great connections Erin, who I met when I started having Iron Infusions 2 years ago (Crohns inflammation also inhibits iron absorption- rendering me anemic quite often).   She is now working on the ER ward where I oft end up, and we get to catch up...and she gives me the comfy recliner for my drip time!  Woot Woot!

There's yet another blog post about how Crohns is NOTHING like I expected. (All those Embarrassing Poop stories and being skinny….let me tell you.   Yeah...I want a refund on that second one!!). And how it's actually this whole other animal, one that I barely understand, so most others don't either.  How sometimes I forget what ‘normal’ feels like, and how other times I feel just like myself.

Anyways….Here's to finding a cure or at least a  better treatment for Autoimmune disorders.  #suckitcrohns #grumpychipmunk #theSWELLlife


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