Perfect World

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I am honest to god getting tired of this hospital.  I am back at my “home base” for my Remicade infusion, this should be the first one at a higher dose.  I, of course, got stuck in traffic so per the usual I could be seen sprinting through the front entrance to avoid a lecture from the infusion nurses.  My “new” nurse (my regular one retired) asked me how I was feeling since I was here just last week.  OH MY GOD people, is there like some conspiracy theory against me?  Shush.

“I feel fine, thank you for asking.”

“You look like you’re not feeling good.”

“Nope, I’m fine.” 

“You running ragged?”

“Can we get the stabby part over?” 

I won’t even get started with the low blood pressure comments.  Between the infusion nurses and the nurses and aides from last week, I am starting to worry myself that there might be something wrong with me.  Christ, I’ve had “low” blood pressure all my life, and they’ve finally given me a complex.

My point being, if you haven’t figured it out yet, is that I’m burnt out on hospitals.  I’m burnt out on healthcare.  I’m burnt out on being sick.  I know the near future isn’t going to be much easier to deal with (ignore) either.

I’m so hellbent on being “normal” lately, that even though I feel like crap, and ALWAYS feel like I got run over by a semi after Remicade, I’m still going to head into work after the infusion finishes.  I’m going to feel like crap at work, I’m going to be blah, but god dammit I will be smiling and joking around, even if I cry on the way home.  I’ll go pick up my kid and we’ll discuss dinner.  We’ll cook something great and I’ll pretend that I’m okay with not eating it because I obviously would much rather have soup anyway.  These next two days, my sub conscious will sabotage me, I will forget to look up the lab right by my work, and I bet you anything that I will be late for my first weekly blood draw.

I know I’ve been complaining on here a lot, in particular regarding my Crohns.  I am sorry if anyone gets tired of reading it, but in the best way possible, the only way I know to say it: Kiss My Ass.  You see, in real life I’m trying to be normal.  I don’t like to complain about not feeling good, I don’t like to flaunt that.  I don’t like to be seen as weak or sickly or “oh that’s so sad” or be pitied.  This is my outlet for it.  This is where I get it out of my head, because trust me, if you don’t tell someone how you hurt, or if you don’t tell someone that your down because you’re not healthy, you’ll explode.

I don’t know.  I guess I’m just having a rough time.  I’m down because I don’t feel good again, I’m down because the disease is moving to different parts.  I’m down because of the meds I have to take and infusions I have to get.  I’m down because of all of it.

I’m really looking forward to warmer weather.  I’m sure running around the local forest preserve with the short one will improve my mood and up my spirits.  The short one is already making plans to take the dogs on walks through the woods and how we’re going to go visit Grandma and Grandpa up north.  My little one definitely keeps me on my toes, she won’t let me be down for long and will literally jump on my bed if I don’t want to do anything but mope.  I’m glad I have her, even if she wants to take a “gajillion” walks with the dogs “all over the country, no cars!” :0)

I hope things will start looking up soon.  I have things to do and places to go, and frankly this shit is getting old.

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5 thoughts on “Perfect World

  1. You sound like a hero to me. I’m amazed you can hold down a job and raise a child AND deal with a medical system. Well done.

    I made the mistake of being honest to my GI doctor yesterday about some of my worries. Really, how silly of me. By the look on his face he was quite surprised that this terminal ileum was talking about life. Seriously, I should know that that was a pointless three minutes of my time and I’m sure I have the crazy label on my file now. You know, a red tab on the electronic medical filing system.

    So, I know we need to pick our listeners when it comes to telling it like it is, either to protect them from the dirt, or protect ourselves from the labels. Go ahead and rant. I’ll read it. It makes sense to me.

    good luck with the remicade. And fake-normal.

    • Aw thanks! Yeah, my GI doesn’t understand much of my “life” either. His response to me worrying about losing my job when we were planning surgery was “well, find a new one”. Yeah, I can’t find good management positions around everywhere, I was appalled that he implied my job (and support for my daughter) wasn’t important. *shrugs* He’s a good doctor, so I just leave him to the “fix my body” crap and leave it be. Either ways, thank you for reading, it’s always nice knowing someone else is out there who understands. :)

      • I agree. Even though I forget, due to the fact my GI wears a tie, my GI is using the same business model as a plumber. Which is fine, because I really appreciate good plumbers. However, as an architect, I’m used to the whole intense holistic project management thing. Doctors do 20 ileums a day and managers/architects do a few projects a year, so difficult to switch around. Still, frustrating. I blame the tie for increased expectations. Good to talk with you. Yes, good to know there are others out there. :)

  2. Dear Sarah,
    I have been reading along the last couple weeks, even though I have been lax in commenting. In one sense I got that you were trying yo work out stuff and weren’t really looking for comfort. More accurately, now and always, I never see you asking for pity. Rather you suck it up and move on, its admirable. But you’re right when you say that the more you suppress the shittiness without an outlet of any kind the more it weighs on your soul. Suddenly you’re a mess and can’t pin point the downturn.
    Anyeya I just wanted to tell you I have never read your posts and thought, ‘God, what a whiny little bitch!’ In fact, I am always bowled over by your strength and determination to live the best life you can by your standards. I admire you quite a lot, dude.
    So I hope this all gets better. I hope you get a handle o your health and come back to a place where you feel hope.
    All my love.
    Sarah

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