Thursday, July 26, 2012

Remicade : Day 1

Well, Remicade is now flowing through my body, hopefully doing what it's suppose to be doing.
I had a mild reaction during the infusion, which was just some small white 'blotches' come up on my skin around the needle in my arm, but nothing to worry about.
But because of the reaction, my infusion took a little longer as they slowed the drip a bit.  Nice comfy leather Lazy boy chairs, but after 3 hours of sitting, I just wanted to get up and walk around.  Eventually took 3 and a half hours after everything was said and done.

My next date with Lady Remicade is August 8......

Tuesday, July 24, 2012

Bank of Remicade

My first infusion is tomorrow and I went to get my Remicade today from the pharmacy......

that'll be $4000 please.  WHAT??!!!

Well....that's what I would have said if I didnt have coverage.  Because I'm here to tell you that there would be no way in h-e-l-l I could afford that!

Somebody is making a ton-o-money off of us sick people....

Friday, July 20, 2012

And So It Begins....

First infusion of Remicade starts this Wednesday.  Looking forward to it, yet, not looking forward to it at the same time.
Two hours and an hour to sit afterwards to see if there is any reaction, etc.
Then, if all is well, I go back on the 8th August, for the next round.

All aboard the Remicade train!!  Let's see where this takes us, shall we............

Thursday, July 12, 2012

Remicade Pre-Opening Ceremonies

One step closer to starting Remicade.

I had to get a TB skin test, for which I went last Tuesday and today went back for them to tell me that I didn't have TB.......or so I thought.  No, I don't have TB, BUT, now I might have to have a chest x-ray.  I had no reaction to the skin test, but because I'm on Immuran (immune suppressant), it could give the test a false reading....what!?!  So then, why not have me just go get a chest x-ray??!!  and skip the skin test?!!  Some times I wonder about our medical system.  Not all of it, just some of it.

Hopefully, because I had an x-ray back on June 1st in hospital, I might not have to get another one....BUT, with my luck.....

Tuesday, July 10, 2012

Diary of an Old Man

10 July 2012

'Woke up at 6am after a bad nights sleep, yet again, but have to get up, I have things to do.  I have to roll out of bed slowly as my back and hips are really bothering me.  Quick shower and start to get dressed.  Getting dressed is hard as its difficult to bend down or bend over to pick up clothes or even put my socks on.  Downstairs to get breakfast but I decide to skip the coffee, cuz my hands are sore so I give up trying to open the coffee jar.  Likewise with the tub of butter, but I manage to open the lid so I can have buttered toast.  Sit down on the coach to eat and watch the morning news, knowing it's going to be a struggle to get up off the coach when I'm done.  When I finally got up, naturally I have to get to the bathroom.  Back, legs and stomach are sore so I don't move very fast, but made it in time.  By the time I'm ready to go and face the world, I'm sore, tired and now, out of breath....ohhh the life of an old man, not too bad for 75 years old....

..........but I'm only 44.'

So here is a quick sense of how things are going for me. 
Went for a TB skin test today in preparation for Remicade, need to go back in 48 hours to see if theres a far so good.
With the way I'm feeling, I can't WAIT for Remicade.....bring in on baby!!!

Sunday, July 8, 2012

What Those with Chronic Pain or Illness DON’T Want to Hear You Say

"Even the well-intentioned often don’t know how to talk to the chronically ill."

Was made aware of an article in the June 27 2012 issue of Psychology Today (thanks Kendra)
As I read it, all I can think was....
What if someone said any one of these when you're having a BAD day?!  =)

Crohnie Quote of the Day

"Enjoy the little things in life....
for one day you'll look back and realize
they were the big things."

Monday, July 2, 2012

The Party Room

This evening, my wife was calling looking for me, so I answer....

"I'm in here" I called out

"Where's here?" she asked

"In the bathroom!" I called back

....and muttered to myself, "Where ELSE would I be"