Wednesday, May 18, 2016

A Change Will Do You Good

Change is hard. It's scary. Despite that I generally like change. I think it can be productive and healthy. Generally I like facing change head on and taking on new challenges. After last week's hospital stay I realized I need to make some changes. It's scary and intimidating, and in an unusual reaction change is kind of freaking me out. Well not so much the act of change but rather my fear of my body's ability to adapt. My fear is that I will make changes and it won't matter. That is terrifying.

In 19 years of struggling with Crohn's disease, six surgeries, weeks in the hospital and countless procedures, office visits and IV infusions, I've almost always maintained a positive outlook in the face of my health issues. This time I'm rattled in a way I never have been. This was my first hospitalization that did not result in surgery. While I'm thrilled to not have to go under the knife again, it worries me that this is the future of my health. What if this is starting to become my norm? What if it becomes harder and harder to push through and deal with my health issues as I'm getting older? What if this change is not in my control and my Crohn's starts to take over? I don't do well with what ifs.

I spent five days and four nights in the hospital. I went through myriad tests and had my body pumped full of steroids and pain medication. I gained 11 pounds and emerged from the hospital a puffy mess. When I saw my GI doctor before being released on Friday we talked about next steps: staying on Protonix (acid-reducing drugs), nixing the steroids (thank God - the high dose appears to have pulled me out of my flare), and really closely monitoring my pain and reaction to food.  At the end of the day Friday my roommate (my third in five days) was released a few hours before me, and I had the room to myself. I had the TV off, and it was quiet save the rhythmic pump of my IV. I found tears filling my eyes because I was (and am) afraid. The hospital is a safe, controlled environment. I actually did a lot of work while I was there (it's easy to be on my laptop in the wee hours of the morning), but I slept a lot. I felt rested. There was nothing else for me to do other than rest. 

As I waited for the wheelchair to take me down to the car where my husband was waiting, I felt panicked. As soon as I got home things would get real again. I would be faced with all the things I could ignore in the hospital. As soon as I got in the car I started crying. I was crying with relief to be heading home and crying with fear that I need to figure things out. I need to learn to let things go.

Recovering with a toddler is a challenge. My husband is incredible, but I feel guilty leaving everything to him. He'd already spent a week working and parenting alone. I needed to jump back in. I was shocked when I got home at how tired I still was. Just walking up the stairs in my house made my leg muscles burn. Carrying the baby was hard. Chasing him was even harder. I had to force myself to let my husband be in charge. He is more than capable of handling it (an understatement - he's amazing), and I had to let him take care of it.

Now after being home a few days it's really not much easier. I'm trying desperately to just leave things...the house can be messy. I can go take a nap and not feel guilty while my husband plays with the baby. I underestimated the toll a week in the hospital and all the drugs took on my body. I haven't even given a thought to running or exercising at all. I'm just focusing on recovering.

I've also realized I've got a very short fuse for the unsolicited advice from my friends and family. I've always gotten lots of advice: give up gluten, give up dairy, give up meat, give up caffeine, stop running, etc. etc. Other than the running recommendation I have at times given up all of those things. Auto immune disorders are hard to deal with and extremely individual. I have a friend with Crohn's who can't eat chocolate at all. It makes her violently ill. That's no an issue for me. I've spent nearly 20 years trying to figure out my nutritional challenges. I've seen four different nutritionists to no avail.

I get that I need to figure this out, but enough with the lectures. I've had so many people texting or emailing me this week about what I need to do. Here's the thing: I am dealing with it. It is a constant and daily struggle. Figuring it out will be too. I'm working on it, and being lectured about what you think I should do does not work. So please stop it. I know it comes from a good place, but it makes me resentful. 

Change is indeed good, and I'm taking it one day at a time. I'm being kind to myself. I'm taking deep breaths. I'm focusing on better choices. Today I had my first thought that I miss running. I know I'm not going to be breaking 20 minutes in the 5k this summer, but I miss way running frees me from Crohn's. It's not going to happen today, but I'll figure out how to incorporate a reasonable level of running into my life again soon. I'm looking forward to getting back to myself and realizing what the new version of myself will look like. I'm sure I'll slip up, but I'll get there.   

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