Monday, December 02, 2013

Crohns and Colitis Awareness Week

This week is Crohn's and Colitis Awareness Week.

I am going to go from the stance that most of you reading this have been to my blog before and know me personally so I am not going to rehash that whole of Carter's disease and diagnosis.
(However if you are new and want to go back and read about it it starts here, there is a bit more here, and we get his diagnosis here).

Anyway I am going to talk a bit about me and how I have changed and what I have learned since this all started.

Update:  I added a #10 to my thoughts...

1.  I feel like I can't even complain.  Yes, Carter has a disease that we have to get treated, but he isn't really sick.  When you look at him you would never think he has an illness.  But, it's one that can come back at any time.  When he started soccer this fall I decided to meet with the new coach about it.  Both Scott & Carter said I didn't need to because Carter is fine, but I am all about the "what ifs" right now.  I don't want him having another flare and then springing it on the coach that he is sick and probably needs to quit soccer for the rest of the season.  So, I don't feel like I can complain (or use it as a crutch) but I am always toeing the line with the future.

2.  I am just fine where I am thanks.  When someone tells me "this {book, movie, diet, etc...} will change your life!" I just say "no thanks."   My life has changed enough and I don't want anymore changes right now.

3.  Talk to people in the medical establishments (ie accounts payable)--they will always be willing to work with you if you talk to them.  I cannot tell you how much easier this has been because of the willingness of people to allow me to be on payment plans.  It could be awful, but it has been manageable.

4.  This has brought Scott & I closer than ever.  I know it's not always the case with illness in children, but it is true for us.  And although we were always a pretty close family, I think we are closer now than before.

5.  Carter has grown!  My biggest worry was when would his development kick in.  We always thought that it was delayed because of the Crohn's, which it probably was, but it has finally kicked in and he is growing (and getting hairy).  In fact, his feet are so big and his legs are so long that we think he has got quite a few inches to go.

6.  What am I going to do when he goes to college?  We have to get his infusions switched to whatever town he lands.  And will he still need to be on a 504 plan in college?  I am going to have research "having a child with an illness in college" or something like that for hints and tips.

7.  Please, please don't let him have another flare-up in high school.

8.  We were so fortunate to get it diagnosed so quickly.  I have read awful stories of kids sick for years without any answers.  I am so glad our doctors took it seriously and we were able to start treating it quickly.

9.  I am not as strong as I thought I was, but I am getting stronger again.

10.   I am way more comfortable in hospitals than I ever thought I would be!  This comes from two 3+ day hospital stays and many out patient stays for infusions.  My dad was recently in the hospital and truly, nothing phases me.  Not sure I ever wanted to feel this easy in a hospital.

And here is his progression from pre-illness to hospital to prednisone (also known as the pictures Carter wishes he could burn) to now:

1 comment:

Juju at Tales of said...

He's a handsome boy. I want to hug you right now.