Visit to the rheumatologist:

[hedgehog]

"How are you feeling today?"

"Pretty Good!"

then, as the visit proceeds, you notice that ache in your hips, and that sore wrist, and recall this and that that you've been placing in the background so you can get on with your life!

So the entire visit was punctuated with - "um, it hurts here, too. Not too bad, but it hurts."

[NightWatcher]

1. my 3 month visits are pretty much the same

If I complain about pain or inflammation she sends me to get blood work to measure my lupus levels and kidney and liver numbers. Otherwise I get that some blood work 2x a year.

We could've handled most of my visits with a 3 minute phone call.

[hedgehog]

2. I'm laughing at myself because between appointments,

I'm hiding my symptoms from everyone, including myself - but at the visit I have to bring those symptoms out because I'm the only one who can list them! You don't want to be complaining or whining, but many autoimmune symptoms are felt rather than seen.

I have to say - at least the blood work is proof I'm not kidding myself!

[NightWatcher]

3. my wife says "keep a symptom journal"

Mon: Felt like crap
Tues: Felt sore
Wed: Tired
Thurs: Journal became depressing
Fri: Stopped Journal

[Warpy]

4. My rheumy knows this stuff so he just asks for a numerical pain

level (I live at 4-6 depending on whether or not I'm medicated) and checks the joints himself. 30 years of Yoga have kept me a lot more flexible than healthy people my age are supposed to be but some of the joints are visibly swollen and inflamed, limiting the amount of fiber work I can still do. I also lose strength due to increased discomfort. O bla di.

At least now he knows I'm not a drug seeker. Took him almost 2 years to figure that one out. When I requested a trial of Ultram because I hated the narcotic buzz, that convinced him completely. Ultram works well on me and with very little buzz, so I'm really happy about that.

Fatigue is an ongoing problem. I wish I could talk someone into a low dose dexedrine once or twice a week but nobody's doing that for us. I guess my house will just have to stay filthy.

[hedgehog]

5. I think accepting that we can have a clean house

or we can do other things, but not both, is one of the hardest things for me.

I have a lot of trouble with the pain scale - trying to figure out where I am on it.

This post has motivated me to look around for a better explanation of the pain scale -

I like this one here:

http://www.healthcentral.com/chronic-pain/coping-403768-5.html

[Warpy]

6. Here you go, a more useful one

http://brainhatesme.wordpress.com/2013/05/11/a-more-accurate-pain-scale-hyperbole-and-a-half/

Print it out and point to it if you have to.

My worst pain was being unmedicated for 10 hours after an open appendectomy, then they dragged me out of bed. I went into shock and they had to lift me off the floor and put me back. Now I might have a seven to nine in some joints and a one or two in others. I can still give him an average.

[hedgehog]

7. I've seen that one too and printed it out -

I love it!

Realistically, I can tell a level 0 from a level 10 - it's telling a 2 from a 4 that gets me!

[Warpy]

8. I go by how functional I am

At a four, I can feel the pain and it's annoying as hell but I can still function. At six, I sit and stare at a wall because actually moving and doing something constructive is out of the question.