Assorted things

[Guest guest]

Hi everyone,

Just wanted to update everyone. I saw my doc and he examined my leg and

confirmed that it was gravity. (I posted photos under the photo section if

anyone wants to see a really UGLY leg.) It's slowly getting better, turning to

a lovely purple and yellow sunrise. At least it doesn't hurt. I am going to

get an MRI of my knee since it was bothering me BEFORE the accident.

I clearly am failing on the Kineret. Pretty much par for the course for me. No

drug works for more than a year before my body find a way to get around it.

Still waiting on the Actemra. Right now, my fevers are back, I can barely

swallow because the lymph nodes are so swollen and hurt and my throat is always

sore. Strangely, my sed rate is not bad, same with the C-RP. I feel crappy,

but my tests don't show it.

In a weird way, the leg thing may be good. I made sure to attach photos to my

Social Security Disability Review. Bruising this bad makes me look really sick.

The reviewers can't " see " joint pain or other symptoms we have, especially when

the labwork doesn't back it up, but this, this is VISIBLE.

Of course, the drama (trauma?) of my life goes on. My daughter is still so

angry with me but I'm not allowed to tell her the truth of what's going on since

I'm monitored even on phone calls. Yet her father is free to fill her head with

all sorts of garbage to alienate her. There's not much I can do when all I get

is 1 hour a week in a conference room with a monitor with her. I still can't

get over how I can be treated like a criminal with no trial, no evidence, only

the uncorroborated lies of an angry child. I feel like a made-for-tv movie.

But I put one foot in front of the other and go on....

[Guest guest]

 just keep plugging along with that one foot in front of the other one even if

you feel you slipped back wards a bit remember you have covered a lot of ground

and moved forward a lot even if it dose not feel like it . as far as your

daughter well coming from one that knows a bit about a thing like yours be glad

you have what you do at lest . it may not feel right and may make you mad but in

the end at lest you still have some contact and that is better then a lot of

parents get like my self we got none during the growing years and now when there

adults its the same. At lest with some contact there is always that hope and

ability to stay in touch and monitored or not matters little what matters is you

have time with her to talk listen and share and that is better then nothing at

all

hugs and keep on plodding one foot at a time

 

the redneck

Marty G.

To learn about Stills Disease http://www.stillsdisease.org/stills_info

Experience: that most brutal of teachers. But you learn, my God do you learn.---

C.S.