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
