GI appointment yesterday/Rant

   I posted a thread a few days ago about my symptoms/side effects of medicine I've been taking so if you want to see that, go ahead.

  Anyways, after my second Remicade infusion/blood work I went to see my GI and I told him about my concerns and he said I just look like a mess(moon face, thin body, rashes, acne, bruises from I.V's etc.). He said I'm vitamin defficient and put me on some vitamin supplements and a probiotic which hopefully should help my symptoms caused from that. The GI said I have some malabsorption issues which is why I keep losing weight and the appetite stimulants and Prednisone just aren't cutting it for me(weight wise & medically). He said he's had very few patients that are as drug refactory as me The Steroid tapering, vitamin defficiencies, malabsorption and Crohn's flare is out of control which is why I have been having such a horrid time lately. I also got a fever yesterday(still going strong) & think I caught some type of crud. It's just never ending...I basically have no choice but to go down hill until this Remicade starts kicking in (if it does).

  Here is my MAJOR rant   I went back to classes today for the first time in a month and was told I looked like a 'dead anorexic who's gained 10 pounds in the face',  'Your hair's thinning out', 'You must be better since your here' , 'I wish I was as thin as you!' and so many simmilar comments. I just went to the bathroom and cried my eyes out after one of my classes. My self esteem is so low now...Then I got the old "It's not that bad. Cheer up! I have strep throat and I'm not being mopey." I was so weak and hurting so bad I just sat there till the person walked away. Why can't people understand how Crohn's REALLY affects us? I got up at 4.AM yesterday to go all the way to see my GI and didn't get back till 12. AM and I still sucked it up, woke at 5 A.M this morning and went back to some of my classes yet I get told to stop being so 'introverted and mopey'? Excuse me for going through heck & back and not wanting to be all smiles!!

I'm done. Any simmilar stories about people being not understanding would make me feel better

People are stupid. They should be treated as such. Next time someone says something stupid, make them FEEL stupid. "I have strep and I'm not complaining!" "Oh? And does strep make you bleed internally, go to the bathroom 20-50 times a day and make your poop feel like super-heated shards of glass? Does it last YOUR ENTIRE LIFE? No? Then shut up and mind your own business, jerk." would have been my response. Maybe. If I had time to think about it. I would probably shorten it to "Go **** yourself" otherwise.

Hey,

"This" post gets posted alot, and it should, it's fair.

If only we had magic wands.

I just wrote this thread myself couple days back.

I see this thread every other day, along with the thousands of others which might as well be parrots mimicking each other.

All good, every post makes me remember I am not alone, every post reminds me that I don't have the monopoly on pain and misery, that I have an extended family linked by these genetics that is also suffering and everyone one of them tries to help me when I post.

It is a weird feeling when you draw strength from others misery.

I am not sure this world we live in now is designed to help sick people, it is desgined to make a profit off sick people.

Until we as a people change our veiws on whats important, and I am not just talking about health, anyone read the latest world wide climate change report? Stunning, longest running heat wave ever, almost 15 years straight, ice caps melting, ocean levels rising, the world ripping its self apart with earthquakes.

People arent the only ones who need healing, the world and its people need more empathy like you find here, understanding, love, these are starting points for fixing problems.

But again, I don't beleive there is any profit to be made in fixing things, I think the profit is in destroying them or keeping them destroyed, that can't be right?

I wish you well, I know this sucks, other then knowing you are not alone and doing what your already doing, we are all in one big boat, floating about in a vast sea of empty medical promises looking for any signs of life out there, someday.

Yeah, I am still hanging my hat on nano-technology, yeah I am a sci-fi nerd, I realize I won't be around to see that happen, but little tiny robots repariring and invigorating your body, the applications would be endless. Bah, who am I kidding, the military would never let this tech be used to heal.

darn, pretty soon I will be bashing the Muppets, and everyone loves them, just mean Im getting a little carried away.

All I can offer is my heartfelt distress for you and tell you I know what your talking about.

The unknown future is where the hope is, that is where I keep my eyes looking, forward, backward is not healthy.

Cya Later

Jon

 

Hey keepingfaith, I was in your exact position about a year ago. Things have gotten so much better since then, but I know how awful it is when you're experiencing it. If you want someone to talk to more in-depth, you should email me. You can find my email address on my profile page. :)