It’s never fun to get kicked out of the club. I got kicked out this week.
In order to stay on the study for Crohn’s Disease, I had to have a significant change in my numbers since the last injection of medication. I didn’t get it. Even though there was a 40 point change, it requires a change of 100 points or more to stay in the study. So I’m out of the club.
I was expecting it, because I’d been keeping my pain level journal and I knew the numbers wouldn’t add up right. Being dropped off the study wasn’t nearly as discouraging as the limited amount of options remaining for me in dealing with this beastly disease. So I allowed a mood of discouragement and just plain, “I don’t care” to take over for a couple of days. But I discovered something: it’s not fun to live like that.
I’ve had a couple of days of getting myself back together slowly and now it’s back to the drawing board. God has gotten me through so many bad times of Crohn’s and He will get me through this one as well.
What were you thinking? To any physicians and surgeons out there, I’m sorry, but please don’t take this personal. If I could go back 25+ years I would yell, scream, throw things around or do anything else I could to get the attention of those people, grab them by the ear if I had to. “What were you thinking?” What kind of a doctor takes 18 inches of colon out of a 14 year old girl then just leaves her to fend for herself? Did you not even think to check for Crohn’s Disease, Colitis or anything? Is it just a favorite past time of yours to yank out parts of a person’s body, leaving a lovely exploratory scar as a parting gift?
I’m working through the grief. After living with gastro issues for more than 25 years, I’m dealing with learning it was Crohn’s Disease all along and I’m grieving what could have been. If the doctors and surgeons had followed through, my life would be completely different. Then again, maybe they did me a favor. What did I accomplish (college degree, three kids, Who’s Who award, program director for a television network, published poet) that I might not have – had I seen myself with limitations? I had my whole life in front of me. You took out 18 inches of my colon and left me with no diagnosis, just to figure it out on my own. Was I better off that way?
Even if I could find those doctors and surgeons and was able to give them a piece of my mind, it wouldn’t give me peace of mind. In reality, there is nothing that can be done now to change anything. “I’m sorry, we didn’t know that much about bowel diseases at the time,” doesn’t work for me. They diagnosed my sister. Was I a bad girl that I didn’t deserve a fair shot at knowing what I would be struggling against the rest of my life?
I’m coming up on one year of getting my diagnosis of Crohn’s Disease. I’ve had to learn a lot the past year. I’ve been through a lot with medications, lab tests (some cost $400 a shot), weekly blood draws to ensure proper medication dosage and learning about things to do and not do for Crohn’s Disease (sure would have been helpful 25 years ago). I’m grieving a part of my life that could have been lived differently, had I known. This week, I’m working on accepting what has happened, because obviously there is nothing that can change it, forgiving the people who failed me all of those years ago and moving on from where I am at now.
This is a journey of acceptance, forgiveness and release. God give me strength and thank You for walking with me.
I am so not interested in a give and take relationship with Crohn’s Disease, but so far that is what I’m getting.
Yesterday I did all kinds of things that had to be done with energy to spare (you have to know I’m joking), and today my body is demanding rest to catch up. These are the days that sneak up on you with discouragement reminiscent of Pilgrim’s Progress and the Slough of Despond. Up to my chin about now.
But the good news is that help does come. I’m waiting. Don’t know how long I’ll be waiting, but I’m waiting.