Thursday, July 22, 2010

Bring cupcakes, I'm having a pity party!

I had a long talk with Dr. GI's physician's assistant the other day.  My EGD came back all clear and the majority of my blood work was okay.  My B12 is still really low even though I have been getting the shots so I am definitely going to keep getting those every month.  Regarding everything else that I am feeling (the pain, nausea, diarrhea, acid, fatigue, etc) Dr. GI and physician's assistant decided that they can't do anything else to help me.  They are sending me to the University of Indiana for further evaluation.  I am scheduled to go to a consultation visit there on August 11th and then have an ERCP on August 12th.  I'm not sure what all is going to happen.  I'm not sure I can even go to the appointments on these days either because I have a midterm in my one class on the 12th.  So, I have a few things to figure out before I set this in stone.
I know that the quality of my life is not good.  I have a few moments every so many days when I feel good.  Good enough to ride a bike around the Wal-Mart.  Good enough to go fishing with my family.  Good enough to make it through all my errands and NOT have to stop and go to the bathroom.  Moments like that.  But the majority of the days of my life I feel pretty crappy.  I hurt a lot.  Way more than I try to let on.  And my pain is in many different forms in many different places.  I have the weird stomach pain, pain when I go to the bathroom, pain from going to the bathroom, and severe bone pain.  I did score a nice big bunch of Vicodin for my pain but honestly, it doesn't even help that much and that worries me.  It leads me to ask myself questions like:  Is this the best I will ever feel? Will I live with pain until I die?  How much worse will / can it get?  How much longer can I fake feeling "okay" until I just can't do it anymore? And the biggie that makes me feel entirely selfish...why me? 



I do realize that I am no where near as sick as I used to be.  I am no where near as sick as a lot of people in the Crohn's blogosphere.  I am truly thankful for that.  Technically, my Crohn's isn't even flaring up right now.  Not to where they can see it via scope, X-ray, blood test, etc... at least.  I know it could always be worse.  But still.  Every day I wake up and I never feel any better.  I don't feel rested.  I still hurt.  It takes all I have to make it to school these days.  And I almost didn't make it through my two clinical days this week.  I'm just so tired.  So nauseated.  So just ... depressed.  Is this my life?  Really? 

Why should I try to make the best of it?  This just down right sucks!  I try to stay positive and realize that I am still very much a capable person.  But I really am starting to wonder just how capable I am when it hurts to stand up, and sit down.  When it hurts so much if I lay on my left side, but I can't even take a deep breath when I lay on my right side because of the pain.  I have at least a mild headache every day and never get more than three hours of sleep at a time because I have to get up and go to the bathroom all night.  I guess I just really feel like voicing the fact that my quality of life is so bad I am starting to wonder why I have to deal with all of this at all.  What's the point?  I mean, what good is this doing?  What is it proving?  That I can look okay on the outside when I literally feel like my body is decaying on the inside?  When I haven't even turned 35 and I feel like I am 95?  That I can go from doctor to doctor and have test after test and no one or nothing can help me.  I am so more than frustrated I cannot even think of a word for what I feel. 

Alright now, who has the cupcakes for my pity party??

2 comments:

The Gutsy Girl said...

Jenni,

I'm so sorry - I can't imagine what you've been through. Please know I have you in my thoughts and you deserve every bit of that pity party (you seem so strong, but everyone has to complain and wonder "why" every now and then).

All my best in finally finding a diagnosis to all of this.

Lindsey said...

oh I will bring some ones with pretty sprinkles, spiked with dillaudid. I feel like that a lot. I am so sorry for all that you are going through. I've been in the hospital over a week and it sucks because you just want to live. I spent June in here and now some of July. I may as well move in lol. But keep your head up. You are in my thoughts and prayers:)