Wednesday, November 26, 2008

Living with PAN-the lighter side

I am having very painful joints and some issues with walking and my brain doesn't always want to work the way it should (more than usual!). I've done two steroid boosts and plaquenil and it doesn't seem to be doing the trick, but I will find out the next course of action on the 4th of Dec. (I was told to prepare to go on the cytoxin again, we'll see.)

Anyhow, I thought I would share a couple of the lighter moments I've had recently.

I am 33 and close with my grandma who is in her 80's, we often attend church together and when we do I usually give her a hand when we walk to the altar to attend communion. There are two steps to walk up and she will use a rail and hold onto my hand for balance. Lately I have not been walking so well, but didn't think we'd have any trouble.

We walk up the steps together and I realize we are a tad wobbly. After receiving communion-where I had knelt down and had some trouble getting back up-we went to go back down and I whispered to her to let me get down the steps first and then I would help her. So I go down, then help her and then we started laughing and she said it was like the blind leading the blind. LOL So true.

The second would've been embarrassing except the lady involved was very nice and had a good sense of humor. I was being checked in for my regular blood draws and the woman at the desk was asking all the regular questions of if my info is still the same, etc. Then she asked what my symptoms were.

I completely drew a blank and could not think of even one of my symptoms.

(WHAT?!?! LOLI live with this everyday.) I tried to buy myself time,"Well, there are so many..." and "I have polyarteritis nodosa" (I could think of THAT but not the symptoms?!)

Still nothing. Not a word, nothing. This has happened before but never with something so obvious and with so many choices.

Then she supplied, "joint pain" YES! That's one.

I then explained that I have some memory and recall issues and this seemed to be one of those times. She said that it must make conversations interesting but that I could probably have fun with that too.

Saturday, November 08, 2008

It's Official, not doing well

I saw my doctor this past week and I am officially still in this flare. The PAN is attacking my joints and I am hurting a ton, having some other issues, and really exhausted. There is also a wicked respiratory thing going through our house, I've been put on a couple medicines to attempt to kick it out and then back on the steroids. I have to go back for tests, they are adding a couple more, in a couple weeks and then see the dr again in 4. He wanted to see me in 3 weeks, but its Thanksgiving and he had no openings. He told me to prepare myself to go back on the cytoxan, but hopefully the steroids will do the trick. (Not holding my breath as they didn't when we tried them a couple months ago for this along with the plaquenil, but still holding a teeny tiny bit of hope.)

So things are not great, but at least my kidneys are still working okay and at this point it does not appear to be affecting any other organs. I am really not ready to go back on the chemo drugs, its been just past 6 months since I came off them. I had hoped I would get a nice reprieve, but no such luck.

In good news we had an awesome Halloween in our new to us house and an even awesomer night when Obama was elected!! And the Hawkeyes beat Penn State today!!!

In other news, that blasted risograph I work with is again NOT WORKING. I had a repair man out on Monday and it decided on Wednesday it was not going to load any new ink and once again none of my troubleshooting efforts are working. Even though I have now gained a lot of risograph troubleshooting knowledge. It loves me, it loves me not...

Tuesday, November 04, 2008


This is so amazing and I am so happy and crying and excited!!!! WOOOHOOO!!!!!!!!

AMAZING!!!!!!!!!! WE DID IT!!!!!

Go Vote. Now.

If you have any interest in your healthcare, vote Obama, now. I personally have voted for him for far more than that and it feels fantastic to vote for a candidate I respect and really, really like.

go here

It's a contest and a good thing and you must click and go here!

Sunday, November 02, 2008

just checking in

Wanted to update, still not doing that great but am a little better. Hurting a lot still, but maintaining, I see my doctor on Tues.-after I go vote for Obama/Biden of course.