Life with Autoimmune Diseases & Chronic Illnesses

I clean my room too much

my-lupus-state-of-mind:

I have a bit of swelling but I got shit done!! :) I’m going to be miserable as shit tonight :(

Also I’m canceling my podiatrist appointment because Saturday looks cold and rainy. (and patches scratched my foot up and I don’t want the doctor to see it)

simply-just-another-girl:

I was not In a flare on Thursday but the blood work I had done (my first post Rituxan labs) were normal!!! I actually thought I was doing a little better before my flare. Now if only they took blood now ( well it would probably not look as bad as I feel) but then she added she tested for serums and basically yeah there’s no unspecified connective tissue disease just SLE lupus.

(Source: my-lupus-state-of-mind)

simply-just-another-girl:

I was feeling pretty okay yesterday and then I felt like crap and it continued through today. I’m still coughing and it hurts. My eyes burn like hell and I’m twitching more and more. My joints hurt but at least they aren’t swelling (yet!)

(Source: my-lupus-state-of-mind)

i think i figured out where the hopelessness comes from. 

when you’re chronically ill, life loses it’s possibility. you never wake up and wonder what you could go do, you don’t make plans. you just bear down and merely try to exist through what you have to.

pain

I hate when doctors ask me to rate my pain from 1 to 10. HATE IT. it’s hard to tell anymore. what used to be a 8 is now like a 4 because i’m used to it. i’m tougher. because i’m saving the 8 for when it’s a normal person’s 20. Although i feel like saying “4,” i feel like it makes it seem like only a wussy irritation when it still hurts as bad as the  8. i don’t want to be used to it. i just want it to go away. 

or maybe give us a pain scale from 1-100. I want to say 8 so they take me more seriously (or maybe they do already, I don’t know). but i mumble “four” and pray they read between the lines. 

Chronic Pain person’s scale:

1.  why even bring it up?
2. meh, minor irritation
3. alright I don’t like this at all
4. this sucks
5. time to take something
6. yikes, time to double the dose or take a nap or both
7. i hate my life. i hate my life. i hate my life.
8. deep breathing, take a bath, grit teeth, take more meds. try not to panic.
9. call the doctor
10.  ER.

Regular person’s scale:

1. this sucks, post pain status on facebook
2. time to take something
3. take a bath, deep breathing, try not to panic
4. double the dose or take a nap
5. call the doctor, possible trip to ER
6. go to ER
7. probably dying
8. demanding morphine 
9. all out hysteria 
10. childbirth. 

What do you fellow spoonies think about the 1-10 scale?

simply-just-another-girl:

I really don’t feel like going out today. I’m supposed to go get my blood draw that was my post Rituxan blood work. Yesterday made two months since Rituxan so it’s very late. I wanted to stay with my rheumatologist until all the post Rituxan crap is over with but to be honest I think I’ll just find a new one. I am not traveling into Manhattan just for blood work. I don’t feel well

(Source: my-lupus-state-of-mind)

simply-just-another-girl:

I was supposed get my post Rituxan blood test done that I arranged last week. After cat and mouse with the office they told me the order is in come in any day. So I was going to go today. I took a shower and I started feeling lightheaded and fell over and bashed my knee on the faucet and hurt my shin bone. This week has been very good (sarcastic) to me so far…

(Source: my-lupus-state-of-mind)

simply-just-another-girl:

I was supposed to go to PA and see my sisters and nephews but I am so swollen I can barely walk. I bashed my baby toe and its very wollen and purple. I just want my joints to look and feel normal

(Source: my-lupus-state-of-mind)

simply-just-another-girl:

I just can’t sleep my eyes are bothering me so much. No matter what I do my eyes are dry and gritty. I need to go back to my ophthalmologist because I can’t use lotemax long term for health and money reasons (that copay is steep!) and I need something long term.

(Source: my-lupus-state-of-mind)

simply-just-another-girl:

Tomorrow I get the holter monitor. I have the appointment for it at 11am. Then I have to go to the post office (always fun to stand on long lines with irritable people!) and then off to a UPS to return an item, only finally to pick up my enemy called prednisone. I’ve got a busy day tomorrow….

(Source: my-lupus-state-of-mind)

Good Morning wow I haven’t said that in a while on here!

simply-just-another-girl:

Pick up my orthotics? or Stand up from 12-5? That is the question!!

Oh yeah I caught another lovely cold this month is just peachy!!!!!

Monday I have to call my primary care and get the 24hr Holter monitor.
I am tired of holter monitors. I’m always so unlucky that crap acts up when it’s returned! 😡😡😡😡

(Source: my-lupus-state-of-mind)