Hard Realizations...

When we were in college (dating not married) 1996 I think... Chris became very ill. It took several weeks -maybe months - before he received a diagnosis of Ulcerative Colitis. He was put on a sulfa medicine and seemed to do well without major symptoms until 2003. He was having a regular checkup (colonoscopy) and the Dr. noticed a slight degree of inflammation. His doctor decided to switch his medication. Well a "small flare" progressed rather quickly into a major ordeal. Chris began getting worse and worse, losing weight fast and feeling wretched. Ultimately he was admitted to the hospital. Remember that we had just married in 2000. Having no intention of leaving him there alone I slept in a chair all night with my head laying beside him on the bed - it was miserable. We both distinctly remember a young nurse walking in and asking if Chris needed anything for pain. At the time Chris said he was fine, no pain.

At some point between 12 a.m. and daylight, Chris began to hurt. The hurt turned to excruciating pain. He called the nurse who comes in only to say... "well there is nothing in your chart for pain so we will have to call the doctor." At that time I had very little control over myself and likely cursed that little girl. Chris was in the fetal position writhing in pain. Finally something was ordered and a needle stick later Chris got a small amount of relief. Another "scope" was done and the response of the doctor lead me to more cursing. He had the nerve to say he had seen much worse with patients complaining less of pain. I was so ANGRY! Chris really didn't care, he just wanted relief. He was getting pain shots every 3 hours and needing them much sooner than that. We got the feeling the Dr. thought he was a druggie or something.

The doctor finally talked to us about an IV medication that might help but that it was like $10,000 and insurance might not cover it. I told him I didn't care, if it would help then he needed it. So he was set up for his first infusion of Remicaid. He was in the hospital for 2 weeks and looked like he might get out and then... he got a MRSA infection in his PICC line site - I imagine there may have been more cursing. That added another week and a missed Thanksgiving. Oh and did I mention Chris was out of school for all this. We had just signed our mortgage in April of that same year and I was FREAKING about the fact that Chris had no leave pay (it had all been used up leading up to the hospital stay).

Well he finally got out and the Remicaid seemed to keep him in remission for a little while. But eventually it seemed that the Remicaid was not keeping the inflammation away. So the gastroenterologist tried this and that over the years. Rounds and rounds of prednisone and other horrible medications wreaked havoc on Chris' body. He ballooned with weight gain because of the prednisone and his self esteem plummeted and depression set in. Eventually, in 2008 I think, Chris received the news that the next step was surgery because we had exhausted all pharmaceutical options. I was devastated... surgery to remove his colon! He was only 32. His gastro team researched and helped Chris select a surgeon at the Cleveland Clinic in Weston, FL (Lauderdale area).

Three surgeries and a year and a half later, Chris wasn't better. There were moments of breakthrough but there were numerous ER trips, hospital stays and tons of narcotics to dull the pain. Now we are faced with the reality that this is our reality. There are no more treatment options, there are no more drug therapies, there is nothing more to do but to grin and bear it. What is this going to look like? Oh and Chris feels like he has no choice but to file for disability. He cannot stand in front of high schoolers on the doses of pain medications he has had to take just to function. What is that going to look like?

A little out and out honesty - I am a little FREAKED out... I mean I have already grown accustomed to the fact that ER visits, pain, frustration, going places without Chris, etc are our way of life. I am not angry with God for not healing Chris although I do have fears about somehow being the thing that is standing in the way of his healing (my sin that is). Anyway... this is what I am praying for and you can pray with me:

1. Praying that God will be clear about this disability thing, or at least give me a peace about it that we can make it


2. Praying that God will show us how to live much simpler lives - declutter, sell give away stuff that is distracting us from Him.


3. Praying that in all this, as we learn to be obedient, learn to be good stewards, learn to rely completely on His provision, that He will bless us by using us to help others.


4. Praying that both Chris and I will allow God to refine our character through all this brokenness.

Yeah... so that's me right now... My first purge? Facebook. While I still have the account so that I can receive updates and messages from our Sunday School group, I deleted all my friends so that I can't spend ridiculous amounts of time waiting to "connect" to someone electronically. Ridiculous I know... Now I just have to keep from replacing that with obsession with Pinterest or going back to blogging. All we can do is see where this goes and find the joy in each moment!