Thursday, June 28, 2012

Had to share

A great friend and fellow IBD'er posted this and it so explains the junk we go through daily!

Hope this helps make sense of my insides on a bad day!  And gives you a chuckle like it did me!

Tuesday, June 5, 2012


Just a little over a year after my set back - I think I am mastering new life.  I just came home from a 10 day vacation with my family and am proud to report I SURVIVED!   Ask me this time last year if I ever thought I could travel for 10 days and I would have for sure answered NO!

I'm so thankful for the amazing doctors and nurses behind me.  And more so my amazing Family and Friends!  The medicines I am currently on seem to be doing the trick for the most part.  I'm not going to lie - I do have to be careful and watch what I do and eat.  But I am managing it!  New normal right?  That was what I was aiming for!

So - I now live my live in 8 week cycles.  I receive my Remicade infusion and then the 8 weeks begins!  Plan as much as possible the important stuff in the beginning of the 8 week cycle.  Kind of sucks when you think about it - having to plan that much and always be counting weeks!  But I will take it for now because I am in such a better place than I was last year!

My doctor is ordering a new set of tests this cycle - he wants to check the levels of the Remicade in my body at the 4,6 and 8 week marks.  I am hopeful that if it shows very small amounts as early as 6 weeks then I can get my infusion cycle time frame increased.  That would mean feeling better more often!  Yeah for that!!!!

Here are a few pics of me with my family on the vacation I not only SURVIVED but had a great time and created so many Magical memories!!!!

Monday, March 26, 2012

Money down the drain....literally!

So with the new year starts new deductibles too! January was a shock when I went to pick up my monthly prescription of Lialda - $760! Yickes!!!!! I then called my GI doc and asked for a few samples to help delay the next big hit hoping that some of my other bills would go through so my deductible would be met. I had an infusion in the beginning of february and was simply waiting for Hoag to bill Blue Shield.

Last week I finally saw the Hoag bill went through and now my deductible was off to the pharmacy I went to pick up my Lialda. It was reduced to $360. I was hoping for free but I was $550 away from my max out of pocket for the year still so they only took care of part of it. :(

Anyway - I had to pay again for this month!

Last night I was taking my 4 pills just as I always do after I brush my teeth. One pill slipped out of my hand and down the drain it went! i was so frustrated. After all that I have been doing to make these affordable I go and drop 1 precious pill! That was $6.33 down the drain! UGGGHHH!

Lesson learned - now I will now close the drain plug to my sink!

Just another trial and tribulation to life with UC!

Wednesday, February 1, 2012

2012.....fresh starts - I hope!

2012 began with a colonoscopy for me! Fun times huh? I know you are jealous. I was actually really looking forward to it. It had been a little over a year since my last one. In December 2010 my colonoscopy was bad - very bad! My doctors words to me were "we can't let your colon keep looking this way!" So - flash forward to January 2012 - words from doctor this time were more like "if I didn't know better I would say you had no disease in your colon at all!"

Well - what does all that mean?

Basically it means that the Remicade infusions are working well! They seem to be healing my colon to about 90%. That is very good news. My lovely insurance company will still only pay for them every 8 weeks though. So - for about 2-3 weeks out of every 8 weeks I have increased pain and sometimes extreme discomfort but for the most part I am fighting through this lovely disease.

My new years resolution this year consisted of one main thing.......BEING HEALTHY AND STAYING OUT OF THE HOSPITAL! So far so good! Lets prays that I can maintain this state and push though the bad times....because finally the good are out weighing the bad!