Rant (extremely long, sorry)

[Guest guest]

A day in my shoes is never easy. I never know how I'm going to feel when I get

up out of bed, one day I'm fine the next day I feel like a mack truck has ran

over my entire body. Sometimes I wonder if anyone understands this. I may look

healthy on the outside but on the inside I hurt. The worst is the pain and the

fatique that comes along with my disease ridden body. My body attacks itself

from the inside out, starting with my joints then slowly eating away at the rest

of me. I do not wish this disease on my worst enemy. I feel like sometimes I

would be better off if I wasn't around for my kids to see me like this, they

don't understand that mommy is like this. I live each day one day at a time

that is all I can do. I feel like somedays I live in hell and other days I'm in

heaven when will the pain stop when will it all just go away.

This is just how I'm feeling today, woke up with extreme morning stiffness

couldn't get out of bed for like an hour then once I got up realized I had a

toothache on top of it all. Then about 4pm I got a massive headache I can't get

rid of. No matter how much pain meds I have taken today everything still hurts.

sigh.

I have had a horrible weekend starting with thursday, me and the bathroom have

been best friends with an upset stomach to boot. This lasted all the way until

today and I have not put anything new into my diet. Then this morning when I

thought it was all over with well it reversed itself. Sometimes I wonder if I

have IBS, I go through this quite frequently.

I also haven't been able to find a job, I can't pay my bills and I'm about ready

to lose my truck since I can't afford to pay for the car insurance for it. This

month I have had to borrow money to pay it. I have atleast 2 more checks with

unemployment that will goto repay an overpayment then I should be able to get

along again on my feet. I really need to find something and my pain levels

aren't getting any better. I have been taking one day at a time, one hour at a

time as well some days. My kids don't understand what is wrong with mommy, some

days I am fine others I'm sick. My daughter will ask me when I have my bad days

mommy are you ok? Mommy what can I do to help you? I tell her mommy is ok and

what you can do for mommy is play very quietly today. To spend time with them

both I tell them they can watch a movie with me or I can watch them play the

game cube since I can't ever afford one of those new gaming systems like

everyone else has.

Last week I had a bag of clothes sitting on the front porch that came out of my

truck to bring in and wash well, I walked away from them for about 10 mins when

I came back to get them they were gone. So now I have limited clothing and

can't afford to get anything else. I can't even afford to goto the local value

village or salvation army at this point to replace anything. If it wasn't for

medical assistance right now I wouldn't even be able to afford the remicade

infusions, some days I wonder if they are helping or not.

I had a reaction when I got it the last time, My old Rheumy would let me leave

right after the infusion so I could drive home safely, the new rheumy makes me

wait about 30 mins before I can leave. This last time after I had left the

office I was driving home and all I wanted to do was get sick, I had a very bad

upset stomach and almost didn't make it home. I had never experienced a

reaction before from it. I will let them know on the 16th of august when I go

back for my next one. I have never needed any premed drugs before getting any

infusions this is my second infusion med. My first was orencia which failed

after 6 months.

in land