Re: Just curious....

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

KATY'S HOME. She and are trying to unload the two car loads and

make it fit into her tiny bedroom!

Diane, I know of one adult CVID lady who has the recurring boils. I

can ask her if maintenance antibiotics or anything else works. But, I'm

not sure where her address is. Give me a day or so to find it and I'll

get back to you.

I'm still praying for your Mom's group. Let me know how it's going and

how's Kody other than miserable with boils?

In His service,

Dale

SNAKpackmomma@... wrote:

>

>

>Just curious, do any of your PID kids have trouble with recurring boils that

>get infected?

>

[Guest guest]

In a message dated 6/22/2004 11:16:21 PM Eastern Daylight Time,

dale@... writes:

KATY'S HOME. She and are trying to unload the two car loads and

make it fit into her tiny bedroom!

Diane, I know of one adult CVID lady who has the recurring boils. I

can ask her if maintenance antibiotics or anything else works. But, I'm

not sure where her address is. Give me a day or so to find it and I'll

get back to you.

I'm still praying for your Mom's group. Let me know how it's going and

how's Kody other than miserable with boils?

Yay for Katy! It's amazing how much stuff you can accumulate, isn't it? My

oldest, Arika, is a senior now! I can't believe it! Where did the time go? In

my mind's eye I picture her at about age 10, always, so when she walks into

the room I'm always shocked at how beautiful and grown up she looks!

Please do send me that lady's address when you find it. Kody is just

miserable. I took him back to the pediatrician yesterday because he was hurting

so

badly he wouldn't walk in pants or shorts (in his undies he would!). The ped

said he couldn't tell anymore if they really were boils (I think so) but was

questioning whether they were bug bites. He said regardless, it is an

infectious reaction and not an allergic reaction which is clearly not normal!

So he

changed antibiotics (Kody was already on one) and I'm using bactroban on them.

They are fire engine red, vary in size from a dime to a quarter. The oldest

one you can now tell that there is a deep pus pocket under the red. I

question them being bug bites for one reason, they are all on the same thigh.

He's

been bit by mosquitos other places and have not had this happen. As for a

general update, health wise, we've dealt with the usual sinus/ear infections

this winter. One pneumonia and one abscess and now the boil problem. Really for

us a good winter. Oh and one admission for more golytely and IV antibiotics

at the same time. The hardest thing for us to deal with is his educational

issues. Even though the neuropsyche eval showed his IQ had gone back up in

general, the areas in reading, language, comprehension, math, spelling etc all

stayed at the regressed level. Even with tons of support at home and at school

he just isn't progressing at all. We had to make a hard decision to keep him

in second grade next year. The thing is, he is still only doing beginning

first grade work. To be honest more like kindergarten work. He can do patterns

and science though. He still does not recognize all the letters of the alphabet

all the time (he will make mistakes every time just not always the same

letters). He is making some progress in sounding out letters. When we told him

he

would be in the second grade again next year, he just cried and cried all

weekend long. He's still upset about it. He's also going to summer school now

which doesn't delight him (although the school started calling it summer

school CAMP just for him to make him feel better!). The big thing is, he knows

he

is behind, that he doesn't understand or learn things the other kids his own

age does. Emotionally and psychologically he is at about an age 5 level. We

had some occupational therapy testing done as well and that also showed him

to be at about age 6 in development motor skills wise. We've also dealt with

other second grade teachers that are insensitive and mean (and oh yeah I have

complained LOUDLY) to Kody. He isn't in their classroom, so granted they

don't know his situation, but still it was totally inappropriate comments to

make. They do a mini economy type thing here in the second grade and you can go

to the " store " when you get your weekly paycheck to " buy " a prize. Kody was

looking at the prizes and found the one he wanted, but he couldn't read the

sign that said that he needed to hand in his paycheck first, so the teacher

running it that day told Kody to " read the sign " , at which time Kody said " I

can't. I can't read yet " so the teacher said to Kody " Then you shouldn't be in

the second grade, young man " !!!!!!!! So you can imagine how hard this whole

thing is for him to deal with, teachers that are morons, students that tease

him, and his own frustrations. I know how to deal with the medical stuff but

this whole end of it has me scrambling every day to deal and I just don't

really know if I'm doing it " right " .

The weekly group is halted for the summer, everyone was quite busy so we

felt it best. Other than that it is going just fine. Not many people come, we

average 5, but I think it's a start. The email group now has 40 members and is

doing very well. I think it hits an area that we all need, just friendship

amongst special needs moms. No criteria for medical needs or whatever. We just

chat. Sometimes ask questions because obviously we're experienced moms, LOL,

but mostly just enjoy sharing with another Mom that understands totally the

frustrations and joys in our lives.

How was Katy's first year at college? I love hearing about her, it reminds

me that there is a future for Kody beyond today. Sometimes I'm just so busy

trying to get through the here and now that I can't see the future for him.

Diane,

Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure

Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD,

generalized anxiety disorder, and all around really great kid! Also Mom to

Arika age

16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website

at _www.geocities.com/schmidtzoo/SNAK_

(http://www.geocities.com/schmidtzoo/SNAK)

[Guest guest]

Diane:

About the boils/bites all being on one leg. Could it be something like spider

bites, something that was in his bed by his leg and it got him several times?

I've gotten clusters of bug bites (chiggers?) on say a leg that was sitting

on grass. I've also gotten some sort of infectious reaction to a bug bite (no

idea what the bug was, never noticed the bite until it swelled and then the red

line started heading up my arm!!!), so it might still be possible they are

bites? I dunno, just thought I'd throw that stuff in there.

I'm so sorry about Kody's school problems. I know my heart simply breaks

every time kids run away from (just your standard social stuff) or they

say

things that hurt her feelings. I know most of it is normal kid stuff and all

kids go through it, but part of me thinks " she should get a pass on some of

this stuff because she's been through so much OTHER stuff " , ya know? Then when

she's missed alot of preschool some of the girls continue on with their

friendships and when comes back they exclude her. I guess I feel like the

many

health issues she's had have added up and I don't want to add cruelty from kids

(or teachers for Heaven's sake!!) on top of all the other things she's had to

deal with. And she doesn't even have any of the additional issues that Kody

has! So I can't even imagine that extra side of it.

>>>>>>> " I know how to deal with the medical stuff but

this whole end of it has me scrambling every day to deal and I just don't

really know if I'm doing it " right " . " >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Diane, I can bet you're doing it as " right " as is possible!! You're a great

mom with more than your share of things to deal with. You have great instincts

and great love for your son, so I just know you're doing your best.

Hang in there!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD,

dairy intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

In a message dated 6/23/2004 2:30:28 PM Eastern Daylight Time,

bunneegirl@... writes:

About the boils/bites all being on one leg. Could it be something like

spider

bites, something that was in his bed by his leg and it got him several

times?

He doesn't get the spots all at once. He gets one and then a week or so

later he gets another and so on. Pretty soon he'll have 4 or 5 in varying

stages

of infection. It's really weird!!! Story of our lives, I guess!

Diane,

Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure

Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD,

generalized anxiety disorder, and all around really great kid! Also Mom to

Arika age

16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website

at _www.geocities.com/schmidtzoo/SNAK_

(http://www.geocities.com/schmidtzoo/SNAK)

[Guest guest]

I bundle up in cold weather and stay pretty much in air conditioning in the summer so I am not bothered very much by weather. I live in a semi-arid desert so we don't get much humidity and I don't notice any change when it rains. I think I'm in the minority by not being affected by the weather but I'll take it. God bless.

----- Original Message -----

From: cat_lady20042003

Rheumatoid Arthritis

Sent: Friday, September 09, 2005 7:10 PM

Subject: Just curious....

I was just wondering if other people experience more pain or stiffness in the joints when it's really, really super duper cold outside. I know in the winter I don't walk, I limp. More or less. There are times when I really wish I could afford to move to a drier warmer climate, because my arthritis also acts up when it's humid. And not to sound like a constant gripe or like I spend a lot of time feeling sorry for myself (Life's too short to do that.) I also have emphysema. (I quit smoking, so it doesn't bother too much.) Sorry, I don't mean to go on and on.

[Guest guest]

Harold,

I haven't talked to you in a while, but glad to hear that you are doing ok. I haven't posted much lately, due to a lot of family things going on, and of course, not feeling so great, but always enjoy reading the letters, especially yours. God bless! ~

P.S. I have my disability hearing next month. Those of you out there who pray, keep me in yours please.Harold Van Tuyl <hvantuyl@...> wrote:

I bundle up in cold weather and stay pretty much in air conditioning in the summer so I am not bothered very much by weather. I live in a semi-arid desert so we don't get much humidity and I don't notice any change when it rains. I think I'm in the minority by not being affected by the weather but I'll take it. God bless.

----- Original Message -----

From: cat_lady20042003

Rheumatoid Arthritis

Sent: Friday, September 09, 2005 7:10 PM

Subject: Just curious....

I was just wondering if other people experience more pain or stiffness in the joints when it's really, really super duper cold outside. I know in the winter I don't walk, I limp. More or less. There are times when I really wish I could afford to move to a drier warmer climate, because my arthritis also acts up when it's humid. And not to sound like a constant gripe or like I spend a lot of time feeling sorry for myself (Life's too short to do that.) I also have emphysema. (I quit smoking, so it doesn't bother too much.) Sorry, I don't mean to go on and on.

Looking forward to the new heavens and new earth He has promised, a world where everyone is right with God.__________________________________________________

[Guest guest]

> I was just wondering if other people experience more pain or

stiffness

> in the joints when it's really, really super duper cold outside. I

> know in the winter I don't walk, I limp. More or less. There are

> times when I really wish I could afford to move to a drier warmer

> climate, because my arthritis also acts up when it's humid. And not

> to sound like a constant gripe or like I spend a lot of time feeling

> sorry for myself (Life's too short to do that.) I also have

> emphysema. (I quit smoking, so it doesn't bother too much.) Sorry,

I

> don't mean to go on and on.

First time here so not sure if I am doing this right? I was wondering

if a damp cold is worse or better then say a dry cold to live in. We

presently live in British Columbia's Coast but are considering moving

to Alberta, which is much dryer and Colder. Would this be worse for my

RA?

[Guest guest]

Warm, dry weather always agrees best with me. My long term plan is somewhere in the Southwest. I'd rather live in a box in warm weather than a cold, wet mansion in Long Island...

(my humble opinion only)

Just saw my orthopedic surgeon and he agrees that total knee replacement is the only way to regain quality of life...I am also having an MRI to determine whether shoulder pain is torn rotator cuff or just garden variety (painful nevertheless) bursitis....Oh the joys of autoimmune disease! Guess I'm gonna have to donate all those shoes to "The Arthur School of Dance".....hey, it was fun while it lasted! Tai Chi.....here I come! : )olrevey <olrevey@...> wrote:

> I was just wondering if other people experience more pain or stiffness > in the joints when it's really, really super duper cold outside. I > know in the winter I don't walk, I limp. More or less. There are > times when I really wish I could afford to move to a drier warmer > climate, because my arthritis also acts up when it's humid. And not > to sound like a constant gripe or like I spend a lot of time feeling > sorry for myself (Life's too short to do that.) I also have > emphysema. (I quit smoking, so it doesn't bother too much.) Sorry, I > don't mean to go on and on.First time here so not sure if I am doing this right? I was wondering if a damp cold

is worse or better then say a dry cold to live in. We presently live in British Columbia's Coast but are considering moving to Alberta, which is much dryer and Colder. Would this be worse for my RA?__________________________________________________

[Guest guest]

---It is nice to hear from a fellow British Columbian. I live in

Creston and it is not a damp cold but it is also not an extreme

cold. I used to live in Vancouver and I have to say I do not miss

the rain. I do not notice too much difference in temperature in my

joint pain. I mostly notice mine based on the time of day. I was

just as sore and stiff yesterday when it was cool and raining as I

feel today when it is warm, dry and sunny. I find during the

afternoon I loosen up and the pain is not as bad. By 7 pm I hurt

again and it doesn't go away till about 10 am. The Kootenays are a

nice area to live in. I lived in the Okanogan and I found the

summers too hot there and the winters to cold. We have a very

moderate climate.

I hope you start to feel better and move to where ever it makes you

the most comfortable and that there is accesability to Doctors. I

have to wait two months to see a rheumy as one comes in from

Penticton every two months. I have to drive over an hour either to

Trail or Cranbrook to see any specialists of any kind so keep that

in mind when you are looking to move, if you will have a doctor. It

is tight for doctors in Canada especially in BC.

Take care,

Janice

In Rheumatoid Arthritis , " olrevey " <olrevey@y...>

wrote:

>

> > I was just wondering if other people experience more pain or

> stiffness

> > in the joints when it's really, really super duper cold

outside. I

> > know in the winter I don't walk, I limp. More or less. There

are

> > times when I really wish I could afford to move to a drier

warmer

> > climate, because my arthritis also acts up when it's humid. And

not

> > to sound like a constant gripe or like I spend a lot of time

feeling

> > sorry for myself (Life's too short to do that.) I also have

> > emphysema. (I quit smoking, so it doesn't bother too much.)

Sorry,

> I

> > don't mean to go on and on.

>

>

> First time here so not sure if I am doing this right? I was

wondering

> if a damp cold is worse or better then say a dry cold to live in.

We

> presently live in British Columbia's Coast but are considering

moving

> to Alberta, which is much dryer and Colder. Would this be worse

for my

> RA?