Re: Quick Hello from and Jo

[Guest guest]

Hi Jo & ,

It's Tricia from Wisconsin here. About brandon's foot (feet) problems. May

I suggest that you do get an appointment with a doc who will order xrays

and see what is really going on..? He will probably write out a script for

shoes that will be " made to order " for s feet. This is very, very

important. I am currently having much difficulty with my own feet. Have had

the dragon since I was 31, and am 60 something now. Anyway..I never took

the " foot problems " seriously. Wish I had. My left foot has turned out quite

a lot...and I never noticed it happening. I did wear some " special " shoes

for a few years, and at first they hurt..but then they were so comfortable

I wore out two pairs. Now, I do have a script for a pair of shoe to fit " my "

feet, but I keep putting off going to order them. For myself, I also have

the

" bumps " on the feet that seemed to all of a sudden just " be there. " There

is a saying " that if our feet hurt, we hurt all over. " This is soooo true!

Happy you aren't getting a divorce! I wonder if it would help brandon to

hand out some of our Stills Brochures. I think people do take notice of

them, and they aren't too much to read. I know he has JRA, but..the

brochures do say on the front " What is Stills Disease? " Then they

read... " A rare form of arthritis first described in Children, less commonly

in Adults referred to as Adult -Onset-Stills-Disease. (AOSD) There's

also a nice picture of a dragon on the front which might enjoy.

Might not be a bad idea to get some and pass them out to his teachers,

and school mates etc. They are free just for the asking.

You have a great sense of humor..it will help (as I'm sure you already

know) get you and yours through the rough times.

tricia from Wisconsin,

" I Hope You Dance "

& & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & &

-- Quick Hello from and Jo

Hello!

I wanted to say a quick hello from . I told him about the wonderful

people here who are already sending him email and he was really excited. He

asked in awe, " They are like me??? " I haven't had a chance to get here with

him to read him the posts and let him answer - we should be able to do that

this weekend. I really appreciate everyone embracing us and sharing stories

This helps SO much.

I went to Parent-Teacher conferences yesterday. has had a sub since

school has started. The past two weeks his teacher has been able to come and

work for half the day. As I was explaining about his dyslexia and the events

that happened last year, I mentioned his Still's. She didin't know anything

about it! She said the vice-principal had told her while passing in the

hallway that was having a hard time. LOL That was it. She thought it

was emotional and that I was getting a divorce! Yikes! No one gave her the

information I had taken up there. Isn't that unreal? She had no idea he was

diagnosed with arthritis and hadn't been told about any of his dyslexia

stuff. I have to laugh now, after all I have gone through with this school

district, it doesn't even shock me anymore. Does this happen often? I had

assumed that if I took the information to the office and handed it to the

vice principal and told her this is more information on the disease

has that it

would be distributed to everyone who needed to know- like his classroom

teacher! LOL I am typing this and can't stop laughing! Sometimes I feel like

I am in some insane comic strip!

One last thing- has been saying that his new boots fit one foot but

not the other. He said they fit the first time he wore them but not now. I

thought maybe one foot was swelling again and not the other. So I looked at

them both and they didn't seem too swollen today but one seemed wider

because of the bone on the side of the foot really sticking out. His little

fingers are already mishapen but I never noticed a problem with his feet

until now. I wonder if his bones always stuck out like that and I never

noticed or have they just begun to do that? I don't want to overreact when

it's something normal! But I have seen my own feet and hands change quite a

bit over the last year. I have big bumps on the tops of my hands by my wrist

joints and am starting to see the same thing going on on the top of my feet

- sort of the area that would be equivalent to the place on my hands. So I

know it can seem like stuff is moving overnight. He has always growled when

putting his shoes on -

he can't get them comfortable. I always thought it's because his feet would

be swollen and/or painful but didn't think it could be because his feet have

changed and the shoes don't fit right! Duh, huh? He has had problems with

his shoes for a couple of years. He wears tennies most days but loves to

wear boots. None of them please him much. Should I take him to a podiatrist

or his GP and ask about it? I know he has had xrays of his back, neck, and

hands but I don't think he's had any of his feet. Or could this just be the

shape of his foot and I never noticed how far that bone stuck out? I guess

what I am trying to ask is if anyone has stuff going on with their feet and

the bones on the side poking out? hehe I'm not very good at asking a " quick

question am I?

Also, I wanted to say that I also take MTX-injectable( among many more meds)

and go through the hair game! I have had to wear a bandana over my hair when

I cook cuz it's gotten so bad! I can definitey sympathize with that.

Thanks again!

Blessings,

Jo

[Guest guest]

Hi Josie, ( I *love* the name Josie!)

Doctor's ..some are great and some just plain aren't. It can be so

frustrating can't it? Let's say " mom knows best, " and you know

what? You do know best..you and your country GP.

would probably be very happy to wear shoes that made his

feet feel good. If he does get his feet xrayed and special shoes,

(and perhaps you could use some too, to save further troubles

down the road) know that at first they might be a bit uncomfortable,

but once you get used to them...so nice. I really need to heed my own

advice here, and get my own script for my " special shoes " in so that

I can start wearing them again. Thing of it is..I was waiting a bit, " cause

I will probably need surgery on my right foot to have some bone fusion

done. As it will be 6 weeks in a wheelchair, and 6 weeks in a foot cast,

I was waiting for Winter. Please keep us posted about what you do..okay?

We live about 2 hours (100 miles) North of Madison. Where do you live?

Maybe you have told us, and I missed it? Wisconsin is a beautiful state.

Your friend from Wisconsin, tricia

" I Hope You Dance "

& & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & &

-- Re: Quick Hello from and Jo

Hi Tricia!

That was my very first thought when I actually started studying his feet

this morning... I thought HE NEEDS SPECIAL MADE SHOES! I'm glad you agree

and kind of confirm my suspicions! I worry that I am just jumping to

conclusions because he has so much going on with him. Then I remember how I

m the one all along who has known it was arthritis when the Dr's dismissed

it over and over again! ( Except for our little country GP)

Where do you live in Wisconsin? My husband drives for Roehl Transport out of

Madison and has fallen in love with WI and the people there.

Blessings,

Josie

TLC <2r1@...> wrote:

Hi Jo & ,

It's Tricia from Wisconsin here. About brandon's foot (feet) problems. May

I suggest that you do get an appointment with a doc who will order xrays

and see what is really going on..?