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!

Tuesday, November 22, 2011


As the holiday season begins to hit with full force I find myself feeling sorry for myself and my inability to function at the level I desire to. The busier schedules, fuller daily task lists, parties, cookies, baking, wine, over eating, special kid activities.....they all add up to complete exhaustion and aggravated gut!

But - as I was having a pity party in bed last night, I flashed back to how I felt this time last year. 100 times worse than I feel right now! I still managed to get through it all last year and create amazing memories with my family. So - with that ah-ha moment I now move to extreme gratefulness for what I DO HAVE right now!

With all that I have I am going to live in the moment this holiday season. Yes- there will be gut issues, an infusion mid way through it all, Dr's visits, meds to take.....but again - 100 times better than last year!

So for any of you with Gut issues big and small - try to put it all in perspective this Thanksgiving week especially. Save the pity parties for another day because this week will be gone too quickly. We all are here for each other - my amazing family and friends and especially my amazing UC support group! I find strength in everyone of you daily! I am beyond thankful for all the special people in my life who support me during my rough times. It is for those same people that I am choosing a different attitude for the rest of this year for too!

Blessings and prayers to everyone! Treasure Thanksgiving 2011 and all its ups downs and in-betweens! I know I am going to!

Thursday, October 27, 2011

The great wonder of what is around the corner

So now that I received my infusion (10/13) and have come back around from feeling yucky....I'm doing pretty well! Why is it that when I am feeling well I can't just focus on that? I try so hard to enjoy the days of feeling "normal" but somehow multiple times each day I find myself go back to...."when am I going to feel bad again?" And there are some days when I even go all the way to..."what if it hits me hard again and I end up in the hospital?"

These feelings do limit me. The best solution that I have come up with is maybe it is time for some acupuncture again. Maybe I need to recenter my thoughts on a more regular basis. I DO want to be 100% present and these "what if's" take that away from me all too much!

On another note...I attended the CCFA conference this last weekend at UCI. The biggest thing I left there with is....I will take what I have right now. My disease isn't the worst it could be! I am very lucky I have avoided surgery to date and I'm going to do my absolute best to continue down the surgery free path!

Monday, October 10, 2011

I survived New York!

I got back from a 3 day trip to New York on Saturday night. I has been very worried about how I was going to feel the entire trip seeing that I was so close to next infusion time. Well - happy to report I felt pretty good the entire trip! Only had some pain and discomfort on the last day. So - I questioned myself - how did I do that???

Come to think of it - we really didn't eat much....and we did eat it was sharing a meal. It comes back around to eating less is better on my tummy! Now that I am back home and to my normal routine that is proving harder to keep to. I have to make sure the kids eat as normal as possible and that proves harder for me again. I've already had more stops in the restroom in 24 hours then I did in the 72 hour New York trip!

I hate that - but I guess all in all I can't complain....I survived New York pretty care free...that I what I wished for! I can grin and bear it here at home!

Infusion is in 3 days!!!! Yeah.....time for some good feeling days!