Same here.....<tapping foot impatiently and checking watch>

Sue,
What I would give for the old tub from the Iowa farm house, or the one from the old rental house in Nebraska!!!

I became a bit miffed, as this young doctor started telling me how though I had osme fusion, the majority of AS.... I could tell she had never seen this Web siter and it's information. I already knew I had advanced Fibro.... But people wiht advanced Fibro do not have anklysoing like I do in specific areas. 3 lumbar fusions both wrists, neck and thorasic.. Yet I am not text book..

Sue, I have chronic diarreah. Immodium is my constant ocmpainion. Our oldest daughter has chrons and has had major bowel surgery!

Sue, I get the very swollen belly from eating. Right now, the only thing I can eat, that does not swell my stomach, is boiled eggs.

I am not sure how long I can continue to work.
Yesterday was close, I got real sick just before time to speak.

How are you feeling today?

Lon

Wendy,
I know exactly what you mean.
I usually wear a gold chian, that Lin gave me years ago. I had to take that off for a while, cause it was too heavy!! Isn't that sad??
Wendy, I still beleive that soem of the AS indicators are more relevant to this arthritis. My x-rays hardly ever show anything in advanced stages. Yet, I know how I feel.
I was in a bit of remission 10 years ago. I broke five bones in my hand playing town team basketball. I finished the night, iced my hand, and had the doctor set them the next morning. I know what pain is; doctors keep telling us bgy looking at x-rays that it "does not show all that much activity"!! phoofy...
thaks Wendy, I hope that you get some relief.
Lon

Dow,
thank you so much!
I ache all over. I do not want be at work! But I am now laughing! Let me get this straight - your Marsha lets you mosey around the house while sop & wet? Come on? there are rules about such behavior!

Also Dow, while on this subject,
"(Marsha had a shower cap, tried it, no too small.)"

You are just knocking me crazy over here!

Lin has a picxture of me with a"robe" and one of her shower caps on at night: I had gone out to talk to a barking dog in a terrible storm. I had a full black beard at the time....

Dow, I would gladly pay Marsha for any expenses if she would kindly take a few candids of you sitting in the rain, drinking a brewski with a shower cap!

Somehow Dow, I feel much more of a kindred spirit between us!!!!!!!!!!!!!!!!!!!!!!!
ah, I love it here

Lon,

thanks for telling me about your fusings and how some doctors judge "pain" by radiological evidence. that helps so much to hear that. as some doctors look at my scans, see no evidence of fusing, see "mild" inflammation on the nuclear bone scan (even a bright white spot on my sternum from pectoral tendon inflammation that hurt like HELLO was termed "mild"), and borderline ESR and CRP #'s and based on those things think i must just be a big baby or overreacting or something. thank goodness other doctors like my endocrinologist, podiatrist, physiatrists understand that pain is not always something that can be seen, but they believe me when i tell them. so nice to be believed vs having to PROVE oneself.

as for the diarrhea, have you tried using psyllium? even my stepfather who lost most of his small intestine to surgery for crohn's using that (plus questrin) to deal with his bowels, he'd have terrible diarrhea if not for that. the nice thing about psyllium is its very natural and works both ways so just balances one out. i'd saved me many a times!

sorry to hear things are such that work gets harder and harder, like my work, your work is much more of a calling than work, so understand how good it is for the soul to be able to serve others.

i'm doing fairly well, the combination of the LDN and flector patches seems to really be helping me.

Is it swelled where collarbone meets breastbone? My PT explained that is actually a simple joint called "sternoclavicular joint", which nobody notices unless it gets inflamed. When it works, it rocks a bit to help you get a little extra range of motion when raising an arm overhead (assuming other joints are working well enough to let you get the arm up there in the first place!)

http://en.wikipedia.org/wiki/Sternoclavicular_articulation

That's the joint!! Can't get my right arm over my head but can get the left one up there - just. In both cases that limitation is caused by shoulder bursitis.

The sternoclavicular swelling is new for me. That joint has been tender but never swollen before.

aloha wendy

ya know, some doctors are just hidebound about their favorite drugs of choice....if it don't work then take more.
aTNF meds really do work, and although you'd probably not believe it i think their safer than MTX (although they do write their lit and warnings much more harshly)- (lawyers).

doctors like to get ya all hot up about this 'new' nostrum they want ya to try...'this one will be the answer'. it's a real emotional rollercoaster to finally get up the gumption to say
'yo, yo, yo, hey, pillpusher this stuff don't work for me'
after eight months this is a failure...more ain't gonna do better. it's done; stick a fork in it .

btw for all my usuall blather about mtx, this med is fifty years old and, frankly, it is not now nor never has been very effective
for arthritis.

but it is cheap.

you're entitled to more.
all my best

That's my thinking too, Ben. The trouble is my ESR and CRP have been coming down steadily and my doc doesn't believe that can be entirely attributed to 6mg daily of prednisone. So he thinks the mtx is sort-of working and I need to give it more time!

Now that I'm on the highest dose, 25mg per week, I think he will change his mind if I still can't get off prednisone because of pain.

I'm not sure they'll bump me straight to the TNFs - I think there's something else they want me to try first.

remember esr and crp are all relative measurments not of inflammation or pain but of the vestiges of inflammation and pain
and they are not perfect.

you can still have an untennable and hideous life situations and the freaking tests will look as if you were doing better.

come right out and say 'your fool tests don't measure me correctly'

you're a lady...tell me every size 2 is the same width and breadth...or size 6...i used to take my mom out shopping-i know better
one size don't fit all

best
you deserve better