Pity Party for One. Thankyouverymuch.

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There is something about my entire body hurting that just puts a damper on coherent thought.  I swear.  I turn into a space cadet and relapse into the good ole’ stutter.  I just can’t seem to think straight anymore (thanks Prednisone) and throw in body aches (again, thanks Prednisone) and I’m damn near crazy.

So I’m sitting here with my Ramen Noodles because dammit on a day like today if I want to be freaking lazy I will, trying to sort out my thoughts.  Which is a task all in itself especially after the last three days.  It feels like there is a little demon, drunk on Cherry UV (if you knew my hatred of flavored liquor you’d understand the analysis here), flailing around like a Tasmanian devil inside my brain.  You know.  Much like the drunk 21 year old you get stuck driving home after their first night out.

Like I said.  Pretty damn near incoherent.  You should see the troubles I’m having with spellcheck.  — Okay.  Apparently it’s *Spell* *Space* *Check*.  Asshole.

So on Wednesday I had an appointment with my G.I. Specialist.  Dr. C.  The most tolerant doctor I’ve dealt with yet.  There is something about him that makes me comfortable, and he’s one of few people I can actually explain my symptoms too with out feeling like I’m whining.

I get in there, and he starts in on the lecture on why I hadn’t checked in since my most recent hospitalization last month.  I make my excuses and he destroys them.  I make more excuses, he destroys them while smiling at me.  I give up.

He asks me how I’m feeling.  I look him in the eyes, prepare to tell him “better” and get my diseased self out of there.  Instead I just open my mouth and start rattling off the symptoms.  Tears start to form but I choked them back.  I tell him how I’m always exhausted but have problems sleeping.  I tell him about how my joints are always on fire.  I tell him how my brain is foggy now since the Prednisone has built up in my system.  I tell him about the gut pain and the fistula symptoms.  I tell him my body is swelling up.  I tell him about my migraines.  I tell him how I feel like I’m 80 and I’d do damn near anything to feel normal again.

Since the hospitalization, I’ve been injecting Humira once a week instead of once every other week, and have been popping Prednisone and Anti-biotics like there is no tomorrow.  The side effects are horrendous and despite all of it, I still have symptoms of Crohns disease.  Which makes me furious.

We discuss my options and my prognosis.  I cringe.  He suggests starting another med.  I cringe.  He lets me know the side effects : hair loss, bone loss, bone marrow issues, to name a few of the pleasant ones.  I cringe.  I choke back tears.  We talk about quality of life.  I agree.

So I got my blood work done to make sure that it’s okay for me to take this new drug.  I should have the results back on Monday.  Then we’ll begin.  The goal is to get me off of the Prednisone since it effects me so badly.  Only a couple more months.

As we all know, I hate going to the doctors.  Mostly because it reminds me that I’m sick.  I can deal with the symptoms of Crohns Disease and get through the day (the side effects of Prednisone, not so much) and pretend that I’m fine.  Just walking through those doors to discuss the next course of treatment makes me break out in a sweat.  It’s like facing my mortality.  During the rest of my life, I can ignore it.  I can go dancing and forget.  I can color a coloring book with the Short One and forget.  I can work in my garden and pretend.  I can cuddle up with the boy and pretend.  In that office, getting stuck with Needles and discussing life altering side effects, I have to face it.  I hate doing that.  Because damnit, if I believe I’m just fine, I’ll never feel so alive.

So I don’t know.  There’s that.  I don’t even want to add the happier aspects of my life into this entry.  Simply because it’ll be down played by all the nonsense above.  I’m going to part on this thought…

 

I may have Crohns.  Crohns does not have me.  Regardless of what medications I have to eat, inject, or endure.  I am still me.  I still refuse to let this stupid disease control my life.

 

Ramen Noodles are gone.  Time to make some more.

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2 thoughts on “Pity Party for One. Thankyouverymuch.

  1. lftsr1

    Hang in there…..things will get better…..thats what I keep telling myself.
    Even after spending 4 hours in the bathroom bleeding from a place where no guy ever wants to bleed from……only to go to my GP and find it could potentially be the med that a doctor who likes looks he hasn’t even graduated high school never mind med school prescribed two days before for the constant cramping……..I’m 33, look older and feel 93

  2. Hey there, thanks for the response. I know it will get better, but sometimes it’s just hard to remember that when the disease is in full swing, as I’m sure you know personally. It’s just frustrating to deal with the sideeffects from meds that are supposed to help us! Arg!

Reply, do it, you know you want to!

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