Last year I thought I was handling everything well. I thought I was dealing well and mentally doing okay.
Wow, I was wrong.
I wasn’t dealing well at all. I was avoiding and not thinking about it. When I was in the hospital I was so drugged up I slept a LOT. When I was home I was either drugged up or, more than I should have been, drinking. That’s not dealing. And yes, I was in pain but the pain meds became a crutch. While I was not addicted in I guess the traditional sense… I was mentally addicted to them. If that makes sense. Or, maybe that is a traditional addiction to them, I don’t know. I do know that when those scripts ran out, I did go to the hospital a few times to get relief when, prior to the extreme illness and surgeries, I would not have.
Let me explain.
Most of my life I’ve been in pain. Not the – oh my goodness I can’t stand up straight pain – but a…what I call tolerable level of pain. It’s always been there to the point that it’s normal to me. Like a fly constantly buzzing in your ear it’s annoying as all hell, but after a while you don’t even hear it anymore.
I was in pain a long time before I finally succumbed and went to the hospital for that first stretch of hospital stays in 2013. I waited a long time to just go and get treated. As they hospital stays become more frequent and my pain become worse, my condition became worse… the drugs gave me a feeling I hadn’t had in a very long time… NO pain. I liked it. Who wouldn’t?
I got used to it. So used to it that even small amounts of pain, that buzz from before, sent me back looking for relief. The problem was that I had gotten used to no pain at all for long stretches of time and wanted that all the time.
I was depressed. I can look back now and see I was. I was a complete mess. I was either drugged up or getting drunk fairly consistently and all the while telling people I was dong well and dealing well. Not sure how many people believed that but I think many did. I projected the image of a strong person, dealing with a really shitty time and doing it well. Maybe there were parts of me that were strong but I feel like I was weak.
Not to say there were not times I was not clear headed but I was definitely a mess more than I wasn’t. I didn’t like that person. I am embarrassed when I look back at how I acted. I do not ever want to be that person again, she was not okay.
Since the last surgery in April, it took some time for me to be pain free. And I was for about 3 months or so. Recently I’ve had pain again. Some of it’s been that buzzing pain I am all too familiar with. Some has been bad but nothing as bad as pre-surgery. Nothing that is sending me looking for relief. It’s tolerable.
When the pain first returned, I was upset. My mood went down, I was grouchy and angry and…a little sad too. I knew going in this was a possibility. The surgeon told me, with as aggressive as my Crohns is, she wasn’t sure how long it would be before my small intestine was affected. Months to years.
I took a day or two and made a decision that I was not going down that dark path again. I was not getting depressed, not going to get drugged up. I am going to take this in stride and just face it. If this disease wants to try to knock me down again I say bring it. I feel like I am more mentally prepared. I don’t know what’s going to happen. Will this small flare lead to a big one and another surgery? I hope not but if it does, I will face it. I will not hide from it this time. I will not have a pity party.
A lot of what the surgeon told me last year is scary. If the disease starts acting up in my small intestine, that could lead to resections (removing small pieces of my small intestine) which, depending on size would be laparoscopic or another major surgery. The worry is, if it continues to happen, not having much small intestine left. You can live without a colon but you cannot live without a small intestine. Short gut syndrome (when you have very little intestine left and can not get nutrients from food anymore) sounds terrible and I hope I can go many years before that happens, IF it happens. In many cases with short gut, you are on permanent TPN. That was the IV nutrition I was on last year. No food, just IV. No thank you. I am hoping, and praying, that this little flare goes away on it’s own and I don’t need any further surgeries for now.
It is scary, this disease is scary and sometimes I do worry that it’s going to take me before I am ready to go. I want to see my kids do all the things I hope for them in life. I want to see them graduate high school, get married, have their own kids. I want to get old and grey and even more memory fogged, annoying my poor husband even more.
Mostly, I want to be happy. Sometimes, that is a struggle for me. My husband says I tend to be pessimistic, I call it realistic. Maybe it’s a little of both.
So, with this flare I’ve decided that I am just going to be happy. I am going to focus on all the good things in my life. Play with the kids more, enjoy the company of my friends and family and just try to not worry about the what if’s and the diagnosis so much.
I can’t control what happens but I can control how I react to it.
I may not always be able to do this, I may slip, I may struggle. I hope I do not slip back into that person I was last year. I hope that if I start to, the people in my life who love me will knock some sense into me. I am trying my best and hopefully a different attitude will help me get through whatever’s coming with a bit more grace that the last time J