I know this is long over-due.
How am I feeling?
Same as I always am. Nauseated and defeated.
The results from the skewering (colonoscopy/gastroscopy) are
nothing. No problems. I am apparently very healthy on the inside. Biopsies
fine. Everything is fine.
Well fuck me.
I hate the word FINE.
If you are chronically ill like me you can understand why
that is so disturbingly upsetting. I want some help, I think that’s obvious
with the doctors I’ve been going to. I would like a problem or an issue or
something that I can find a way to manage or treat. With no answers I have no
treatment plans which means I have NO IDEA how to make myself feel better!
As time goes on my days of feeling “normal” are fewer and
far between. Sometimes I have a span of a couple days where I feel okay. I can
sort of eat normal and go about my days. Then there are spans of days where I
feel like a bag of shit. I don’t know why I feel this way or how to make it go
away. Sometimes it comes out of nowhere and floors me wherever I am and
whatever I’m doing.
All I can do is just attempt to manage my symptoms.
The worst is trying to work while feeling like this. I go
through the motions of the day yet inside I feel like HELL. I try to make it
through the day and when it gets so bad I can’t even sit upright, I take myself
home to bed. 95% of the time I trudge through it at my desk. Why? I don’t want
to be that person. I want to imagine I’m okay even when I’m not. The brain is a
powerful thing. If I stayed home every morning I felt sick I would never work.
I have never felt so helpless for so long.
My gastro doc throws her hands up in the air. The only
saving grace is that she seems very interested and also has noticed a poor
quality of life. Ergo she has gracefully given me a semi-permanent script for
Zofran. Something I begged my GP for but who shook her head and gave me just a
few. I asked for Zofran because the only anti-nausea med we have available to
us over-the-counter is Gravol (Dramamine for my US friends). Gravol is
wonderful BUT makes me feel high and knocks me the fuck out, ergo, making it
impossible for me to use it at work. Zofran, I can still go about my life with
little or no side effects.
She does think it might be gastroparesis (a wonderful complication of T1D) but I disagree. We are holding off on drugs to treat that to see what happens in the interim. She has me on a prescription ant-acid which is doing fuck all.
My naturopath throws her hands up in the air. I’ve
officially lost faith in her. She was the one person I had a modicum of hope
for. I paid for a food sensitivities test out of my pocket. Over $300 to find
out I have next to NO food sensitivities.
I’m really starting to think this is all in my head. My
anxieties? My sensitive processing issues?
In the end….. (yes… I’m at the end) I am left hopeless.
Sometimes helpless. Most of the time useless as a human. Everything makes me
feel sick. All my bike riding? Sometimes I take Zofran just to ride my bike.
Other times I come home so nauseous I can barely shower and get myself to bed.
Granted there are times I feel great but like I said, those times are fewer and
far between these days.
I have really learned to cherish the times I feel good
because they never seem to last long.
As I seem to get worse the answers seem even farther away.
They don’t exist. I’m done with all the doctors. I appreciate the help and
investigatory nature they have done but for over a decade, no doctor has ever
figured it out.
What’s worse? I hate writing these blog posts. I want to say
something good for a change. I don't even know what to say anymore.