J-pouch Life

Hi, guys!  So, I’m still alive.  I thought I would give you a brief update about how things are going with lupus.  It pretty much sucks.  It’s not like I’m not used to pain and my body doing weird shit, cause I totes am. However,  I am used to it mostly being invisible to the outside world.  Previously, this was something that both pleased and annoyed me, because I could be in excruciating pain, exhausted, but still get the, “But you look so good!” comment.  Well, lupus is very visible for me.  In addition to my freakishly swollen finger joints, I have a rash all over my neck, chest, torso.  I can cover that up with clothes, but it’s spreading to my face! This is forbidden territory, lupus! Stay the hell away!  Anyway, it’s like this scaly, red rash.  Not quite hives, but basically.  Today my eyes started itching so bad I kinda wanted to claw them out.   It feels like there’s sand in them and my vision is kind of blurry.  They are super wattery from all the itching and I’m getting that nice crust around my eyes.   I look kinda shitty, but it finally matches the way I feel!  Like I said though, not sure I like it.  I can be honest with you guys, I’m kind of vain.  I like my pretty, milky-white Southern-belle skin and bright blue eyes.  I liked having the illusion of health, if only for myself.   This scaly-skinned red, crusty-eyed monster is not working for me.

How does the pain compare to Crohn’s though?  It’s just…different.  I can’t say that it’s worse, although in some ways it is.  I could always be mobile with IBD-well, not when it had me bed-ridden, but I could generally haul major ass to the bathroom.  Not so with lupus.  I basically hobble everywhere, grunt or yelp loudly every time I get up or down.  The only way I can sleep is under a blissful pain-pill coating.  It’s basically affecting every other part of my body.  I have had diarrhea, but haven’t noticed much in the way of Crohn’s other than that.  My stomach isn’t terribly painful, but my muscles, joints, and bones are.  Skin, eyes, etc.  It’s just a totally different experience-different body systems, different pains, different restrictions.  I’ve been sleeping a LOT.  The only productive thing I did today, which basically turned out to be a complete waste of my time, was go to see a new GI here.  Now, the term “specialist”…don’t read too much into that, because the last few I’ve had have not known what to do with me.  I appreciate that a lot of weird, unfortunate shit happens to me-hence my seeking the assistance of an expert.  I did admire his bluntness, but he mentioned, more than once how severe and unfortunate my case was.  He said, and I quote, “I live in fear of your situation.”  I’m sitting there, hunched over in this chair, dead exhausted, covered in red spots, thinking, “Are you fucking kidding me?”  Believe me, I am FAR past sensitivities.  I like people that tell it like it is, but really, doc.   No shit.  I don’t need to know how bad I am.  I am completely fucking aware!  I need your help, not for you to state the obvious.   Which, is pretty much all he did aside from some blood work.

Now…on to the GOOD news! Yay, I lurve good news:) So, I think part of the reason I can deal with the crap storm around me is because I have faith and an amazing group of people in my life.  First off, the IBD/J-pouch community.  You will not find more helpful, generous people.  You guys rock!  Second, my friends and family are just so loving.  It makes it a lot easier to deal with this crap when you have a ton of people that truly love and care about you and want you to be better.   I have a lot of people in my corner.   This includes past doctors.  One, and probably my only good GI ever-from Vanderbilt- saw a post about me on Facebook and e-mailed me to see if he could help.  That’s pretty awesome.  Also, a good friend of mine recently saw Dr. Shen at Cleveland Clinic and essentially said, “Liz, you HAVE to see him. I will pay for it if your insurance doesn’t cover it. He’s amazing.  You have to go.” So, obviously that’s super sweet on a number of levels, but thanks to divine Providence or what have you, our new insurance covers Dr. Shen and all docs at CC, so that’s freaking awesome!!!  Also awesome, Miss Jackie Z., fellow jpouch.net blogger, got me Dr. Shen’s e-mail so I could touch base with him, inform him of my history, and schedule any tests.  During this exchange, he decided that I need to be seen ASAP and is getting me in this month!  Another prayer answered.

So, even though things have been sucky and I kinda feel like Goldblum in “The Fly”, I see a light at the end of the tunnel, I see hope, and that’s what I needed more than anything.

AWESOME UPDATE!!!!

At the urging of my GI, I went to a run-of-the-mill Urgent Care Center.  The doctor examined my eyes, rash, etc., gave me a shot of steroids in the ass, an Rx of Prednisone, and drops for my nasty eyes.  When I woke up this morning, for the first time since my last dose of ‘roids, I was not in pain!!! OMG, I cannot tell you how thrilled I was when I stretched out this morning and nothing hurt! All my joints moved with relative ease, but no pain! Ah!!!! I am so excited! Feeling good puts me in the best mood

These posts might also help out:

• April 13, 2012 -- Jpouch.net – Top Crohn’s/UC Blog Honor from Healthline.com (4)
• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)
• November 10, 2009 -- Just Dance! (10)
• July 3, 2008 -- Sex and Intimacy (0)