RE: What Do You Get For a First Anniversary?

[Guest guest]

Hi Mike....

I was diagnosed Oct. 98 and I agree that the time has flown by. Each

day brings something new for me to figure out and of course new wrinkles

and more grey hair. When I hear of others who are still fighting to

find that RIGHT doctor.... I'm thankful that I have doctors who take

good care of me.

BBQ time....Mike, when you're making those cookies make sure you keep

the lid down....lol You'll know when they are ready.

Can't wait for BBQ roast.... I love spring time...

Take care,

Vicki

[Guest guest]

Hi Mike,

We've been at this for 3 years now; was dx'd on March 6, 1998.

Those years have absolutely flown by! She was a 7YO first grader who

was the tallest kid in her class back then. That first year was a

terribly busy time for us, and we had to make a lot of adjustments and

learn a lot of things we never though we'd have to. The second year

was a slow decline into a flare and a long, slow recovery from it. The

past year has been a successful but sometime agonizingly gradual

process of tapering meds; lots of little successes. Today, is

the second-smallest kid in her fourth-grade class, but has done a lot

of growing up. I'd say she's easily the most mature kid in her class

today.

We never " celebrated " the anniversarys. If someone remembered, we

might say something over the dinner table. I guess, to us, the dx was

not the kind of event we wanted to commemmorate, like a birthday or a

wedding or whatever. That's just us, though. I think it's great that

you want to acknowledge a year of survival.

The years do seem to get shorter as we get older. I have a theory

about that. As a child, a year is a significant percentage of your

life, so it seems to take a long time. A year is 7% of a 15YO's life,

10% of a 10YO's and 20% of a 5YO's! But once you get up there, the

percentage drops and they seem to zoom by - by 20 it's 5%, at 40 is

2.5%, and at 60 it's 1.7%. These become relatively insignificant

slices of our lives, so they seem to slip by more quickly. It may well

be a function of the way our brains are wired or trained. Think about

it this way - If you were sitting in a room and the lights got 10%

brighter, you'd certainly notice. 5%? Maybe, 1.7%? Probably not.

Congrats (?) on your " anniversary " , Mike. Take care,

Ralph

> So here's the question: what do you get for a first anniversary? ...

> I'm talking, of course, about my first anniversary of officially

> having myositis. I celebrate mine in two days. For weddings, I

> believe you get (or give) " paper. " I confess I had been idly planning

> on doing something with alcohol, but the methotrexate seems to have

> eliminated that idea, and in a very efficient manner at that.

>

> Since I have DM, maybe something with an SPF 40 rating is

> appropriate? Or perhaps a hat?

>

> Being serious, it is hard to believe that a whole year has gone by

> since my diagnosis. It really doesn't seem all that long ago. How

> about the rest of you? Is your experience the same, with time really

> seeming to fly? Maybe this is something that everybody goes through

> as they age.

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

Good Morning Ralph!

Ralph, is your only child or do you have other kids as well? Do

her other classmates know what she has or does she not talk about it?

I've often wondered how this is handled when the other kids ask

questions.

Thanks,

Vicki

[Guest guest]

Hi Ralph.

Thanks for your reply. It really bothers me that children like

have to go through this disease. They are supposed to have fun (well,

as long as they behave themselves in the first grade -- right, Ann-

Marie?) and should not be forced to look on things from a grown-up

perspective too soon. If they have to take unpleasant medication, I'd

hope it was restricted to cod liver oil.

You mentioned that the years seem to slip by faster as you grow

older, and I think you are right. Your idea of the reason for the

subjective speed difference as you age also makes sense. I guess that

I am now on the slippery slope and heading down. So far, the trip is

quite interesting, and I am enjoying it.

I am not really " celebrating " the anniversary, but just noticed the

date while I was going through my old calendar. One of the advantages

to living in Canada is that tax deadline day is April 30, not April

15 and so I'm just now checking dates and starting to call my

politicians bad names. I'm starting at " scallywags " and anticipate

the names will get cruder as the tax return progresses.

Say hi to for me.

Mike B

[Guest guest]

Ralph...I'm glad Vicki asked those questions. They're good ones. Annette

Re: What Do You Get For a First Anniversary?

Good Morning Ralph!

Ralph, is your only child or do you have other kids as well? Do

her other classmates know what she has or does she not talk about it?

I've often wondered how this is handled when the other kids ask

questions.

Thanks,

Vicki

[Guest guest]

> Ralph, is your only child or do you have other kids as well?

> Do her other classmates know what she has or does she not talk

> about it? I've often wondered how this is handled when the other

> kids ask questions.

is our one and only. Her teachers and school administrators

were in on it from the start - we write a letter at the start of each

school year explaining what has, how it may affect her, and

that she may need occasional (or more often) excused absences for

doctor appointments.

Her classmates have handled it very well. They would ask about her

rash, or her weight, or whatever and she would simply give them an

honest, straight answer. This has always proved satisfactory. She

goes to Catholic school, and the attitudes are different, more kind

and accepting. The only problems ever had were when she was

using a bus that was shared with public school kids. They would shun

her, or stare at her. That really up set her. Luckily, that was

only in that situation for a short time.

The bigger problem is nosy adults, usually strangers. They would

ask about her " sunburn " a lot. I taught myself a lot of snappy

comebacks. People can be very rude.

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

hey ralph,

i'm pretty sure you haven't heard from me before but i'm susan. anyway, this is the first time i've read about your daughter and it caught my eye and brought back some memories. you see, i was diagnosed with polymyositis when i was seven years old. i was also the tallest in my class back then. the transition from being a healthy child to finding out i had pm was especially hard because i was forced to understand everything my doctors were telling me from the get-go because my mother didn't speak english. i'm just recently turned 18 and am still on all those dreadful meds. [mainly prednisone].

anyways, if you don't mind i'd like to get to know more about your daughter and her situation. [i can probably share a lot of the same feelings she's having] and it's great that her peers and being understanding about everything. i went to public school and the kids were awful. some adults were even worse. i remember a time when i was on such a high dose of prednisone and my cheeks were really chubby and one lady came up to me and said "what's wrong with your face? did you get hit by a car?" i was so mad.

i should stop babbling. well i hope things are going well for your family.

it sounds like it. take care of yourself.

susan

p.s. tell julia i said hi...=]..oh..and where are you from?

[Guest guest]

Ralph...I think you and your wife are strong about this because is,

right? And she's certainly strong about it because you and your wife are.

You are a very blessed family. Annette

Re: What Do You Get For a First Anniversary?

> Ralph, is your only child or do you have other kids as well?

> Do her other classmates know what she has or does she not talk

> about it? I've often wondered how this is handled when the other

> kids ask questions.

is our one and only. Her teachers and school administrators

were in on it from the start - we write a letter at the start of each

school year explaining what has, how it may affect her, and

that she may need occasional (or more often) excused absences for

doctor appointments.

Her classmates have handled it very well. They would ask about her

rash, or her weight, or whatever and she would simply give them an

honest, straight answer. This has always proved satisfactory. She

goes to Catholic school, and the attitudes are different, more kind

and accepting. The only problems ever had were when she was

using a bus that was shared with public school kids. They would shun

her, or stare at her. That really up set her. Luckily, that was

only in that situation for a short time.

The bigger problem is nosy adults, usually strangers. They would

ask about her " sunburn " a lot. I taught myself a lot of snappy

comebacks. People can be very rude.

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

Ralph, I think if I had a child today in school, he/she would go to

Catholic school. My daughter sends her girls to a Christian school as

well. Our public schools are in trouble and it will be years before

it's corrected if ever. I just wonder if the private and Christian

schools around the country have had an explosion with new students since

all the trouble in our schools. I would think so. I'm glad to hear

she's doing so well and goes to a wonderful school.

Take care,

Vicki

ps: Is it possible that is daddies little girl?

[Guest guest]

Vicki...I think you're right...about private vs public schools, and I also

think you're VERY right about being " Daddy's little girl! " How could

she NOT be, right, Ralph? Annette

Re: Re: What Do You Get For a First Anniversary?

Ralph, I think if I had a child today in school, he/she would go to

Catholic school. My daughter sends her girls to a Christian school as

well. Our public schools are in trouble and it will be years before

it's corrected if ever. I just wonder if the private and Christian

schools around the country have had an explosion with new students since

all the trouble in our schools. I would think so. I'm glad to hear

she's doing so well and goes to a wonderful school.

Take care,

Vicki

ps: Is it possible that is daddies little girl?

[Guest guest]

> Ralph...I think you and your wife are strong about this because

> is, right? And she's certainly strong about it because you

> and your wife are. You are a very blessed family. Annette

You are very perceptive, Annette. Yes, we do draw strength from each

other. I appreciate your kind words.

Ralph

PS - Hot enough for you today? A new record at Logan, no less!

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

> Ralph, I think if I had a child today in school, he/she would go to

> Catholic school. My daughter sends her girls to a Christian school

> as well. Our public schools are in trouble and it will be years

> before it's corrected if ever. I just wonder if the private and

> Christian schools around the country have had an explosion with new

> students since all the trouble in our schools. I would think so.

> I'm glad to hear she's doing so well and goes to a wonderful

> school.

It's actually not, except in some school systems that are in the worst

shape. Private school costs money, and money talks. Sadly, most

parents can't or won't spend the money.

> ps: Is it possible that is daddies little girl?

Slightly ;-)

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

I got yelled at in a Mc's bathroom by a woman who thought it was her

business that was so " sunburned " . Another time a cashier made

feel bad when she was ringing up his pull-ups. " Now I know these can't be

yours because your too old to wear these. " He was just 4 and most of you

know, as wasn't BM trained when he got the disease it took until this

last winter for him to be able to use those muscles. was so

embarassed. In both cases I explained his situation and they were both

shamed. I hoped it made them think twice before they opened their big

mouths again. Ralph is absolutely right. The adults are worse then the

kids. The kids in 's class are great. They remember not to push him

or knock him down etc... His sister's teachers are always kept up to date on

's progress as all of this has a direct effect on him. I have already

met with 's principal as he starts kindergarten next year. I don't

anticipate any problems.

Cari

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: What Do You Get For a First Anniversary?

>Date: Tue, 24 Apr 2001 19:15:00 -0000

>

>

>

> > Ralph, is your only child or do you have other kids as well?

> > Do her other classmates know what she has or does she not talk

> > about it? I've often wondered how this is handled when the other

> > kids ask questions.

>

> is our one and only. Her teachers and school administrators

>were in on it from the start - we write a letter at the start of each

>school year explaining what has, how it may affect her, and

>that she may need occasional (or more often) excused absences for

>doctor appointments.

>

>Her classmates have handled it very well. They would ask about her

>rash, or her weight, or whatever and she would simply give them an

>honest, straight answer. This has always proved satisfactory. She

>goes to Catholic school, and the attitudes are different, more kind

>and accepting. The only problems ever had were when she was

>using a bus that was shared with public school kids. They would shun

>her, or stare at her. That really up set her. Luckily, that was

>only in that situation for a short time.

>

>The bigger problem is nosy adults, usually strangers. They would

>ask about her " sunburn " a lot. I taught myself a lot of snappy

>comebacks. People can be very rude.

>

>Ralph

>==========================================================

>Ralph Becker http://www.ralphb.net/

>Will Juggle for Food. RKBA!

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

I feel I must defend!!!! My girls, and soon , attend a public school

that is amazing. I couldn't be happier with their education. Yes, we live

in GA. but the bad schools are so bad that they throw the stats off. We

live in a smallish community and the school has strong parent support. As

my girls move up a year I never have concerns over what teacher they will

get the next year as they are all fantastic. We purposely moved into this

school district. Shelby's entire class is well above the standard grade

level and Karsyn's class is also. The wide range of experiences and

subjects covered is outstanding. Please don't lump all public schools

together. I wish all children had the same opportunity my kids have. Our

school outranks the private ones. We have 3 school districts next to each

other that we are all very proud of.

There, I feel better.

Hugs, Cari

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Re: What Do You Get For a First Anniversary?

>Date: Tue, 24 Apr 2001 13:37:06 -0700 (PDT)

>

>

>

>Ralph, I think if I had a child today in school, he/she would go to

>Catholic school. My daughter sends her girls to a Christian school as

>well. Our public schools are in trouble and it will be years before

>it's corrected if ever. I just wonder if the private and Christian

>schools around the country have had an explosion with new students since

>all the trouble in our schools. I would think so. I'm glad to hear

>she's doing so well and goes to a wonderful school.

>

>Take care,

>Vicki

>

>ps: Is it possible that is daddies little girl?

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Dear ,

Sorry, but I "eavesdropped" on your note to Ralph. I must say I was very touched by what you wrote, and please never think that sharing your experiences and feelings is "babbling" because we learn from each other and your experience becomes our experience as well. My name is Annette and I have dermatomyositis.

-----Original Message-----From: ditzyxgyrl@... Sent: Tuesday, April 24, 2001 7:59 PMTo: OurMyositis Subject: Re: What Do You Get For a First Anniversary?hey ralph, i'm pretty sure you haven't heard from me before but i'm susan. anyway, this is the first time i've read about your daughter and it caught my eye and brought back some memories. you see, i was diagnosed with polymyositis when i was seven years old. i was also the tallest in my class back then. the transition from being a healthy child to finding out i had pm was especially hard because i was forced to understand everything my doctors were telling me from the get-go because my mother didn't speak english. i'm just recently turned 18 and am still on all those dreadful meds. [mainly prednisone]. anyways, if you don't mind i'd like to get to know more about your daughter and her situation. [i can probably share a lot of the same feelings she's having] and it's great that her peers and being understanding about everything. i went to public school and the kids were awful. some adults were even worse. i remember a time when i was on such a high dose of prednisone and my cheeks were really chubby and one lady came up to me and said "what's wrong with your face? did you get hit by a car?" i was so mad. i should stop babbling. well i hope things are going well for your family. it sounds like it. take care of yourself. susan p.s. tell julia i said hi...=]..oh..and where are you from?

[Guest guest]

Hi ,

You can read all about and how we've dealt with JDMS

on her JDMS Diary web page, at:

http://www.ralphb.net/JDMS/

I do know that as rare as JDMS is, JPM is even more rare. The

treatment and outcome are similar, but they do have differences.

Thanks for sharing and offering your good thoughts.

Oh, and Happy Birthday (belated)!

Ralph

PS - We live in Massachusetts.

> this is the first time i've read about your daughter and it caught

> my eye and brought back some memories. you see, i was diagnosed

> with polymyositis when i was seven years old. i was also the

> tallest in my class back then. the transition from being a healthy

> child to finding out i had pm was especially hard because i was

> forced to understand everything my doctors were telling me

> from the get-go because my mother didn't speak english. i'm just

> recently turned 18 and am still on all those dreadful meds. [mainly

> prednisone]. anyways, if you don't mind i'd like to get to know

> more about your daughter and her situation. [i can probably share a

> lot of the same feelings she's having] and it's great that her

> peers and being understanding about everything. i went to public

> school and the kids were awful. some adults were even worse. i

> remember a time when i was on such a high dose of prednisone and my

> cheeks were really chubby and one lady came up to me and said

> " what's wrong with your face? did you get hit by a car? " i was so

> mad.

>

> p.s. tell julia i said hi...=]..oh..and where are you from?

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

aw thanks annette. i just don't know what to say sometimes because i don't know if it's "important" enough, but thank you for making me feel welcomed..=]

susan

[Guest guest]

Hi ... So glad you popped in so we could say hello to you. How

have you been? I had often heard that JDMS pretty much goes into

remission when you become an adult... I'm sure Ralph would know this for

sure. But, I've also heard that PM is very rare in a child so maybe it

acts differently than DM. You said you take Prednisone but are you on

Imuran or Methx? Does your doctor think as you get older it will go

into remission?

I hope you had a good day and 's diary is great so I hope you'll

read it. Ralph has done a wonderful job keeping track of everything.

Take care,

Vicki

[Guest guest]

... everything you have to say to us is important. So please don't

feel like you have nothing to say.... cause I bet you do.

I would like to know how you handled your PM and high school. Was that

a bit rough on you?

Take care,

Vicki

[Guest guest]

,

Everything you have to say is important enough. We want to hear from you

and know how you are doing. My has JDMS and he is 5. Glad you popped

your head in.

Hugs, Cari and

>From: ditzyxgyrl@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: What Do You Get For a First Anniversary?

>Date: Wed, 25 Apr 2001 23:33:49 EDT

>

>aw thanks annette. i just don't know what to say sometimes because i don't

>know if it's " important " enough, but thank you for making me feel

>welcomed..=]

>

>susan

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

hey vicki,

yes i am on prednisone, but i'm not on imuran or methotrexate. i was on both a couple of years ago, but i didn't react well to both of them. [nausea and vomiting]. my doctor also hasn't said anything about my polymyositis going into remission when i get older. i'm actually supposed to try a new med called campath-1h in either june or july. its been used in europe for about ten years and is just being introduced to the states. it's mainly used for cancer patients, but i'm going to try it. if it works, my doctors will treat it as a "cure" and take me off all of my meds. if it doesn't work than i'll be trying a stem cell transplant. if you have anymore questions, please feel free to ask. that means everyone...=]

take care,

susan

[Guest guest]

hey vicki,

well pm and high school was really rough actually. i didn't get to attend the same high school with all of my friends from junior high, so entering high school i had to make a whole new set of friends. i gave my counselor, teachers, and principals letters explaining my condition which helped because i was allowed to get up for water or use the restroom whenever i needed and i also got extentions on my homework whenever i was absent from being sick or doctor appointments. making friends was okay because i looked normal so no one really thought i was sick. as i grew closer to my friends, thats when i informed them and they were really understanding about it, telling me if i ever needed anything they'd be there. the harder part though was dealing with those who didn't know me very well, mainly those who were in marching band with me that didn't talk to me much. they knew i had "health issues" but didn't know exactly what and they thought it was unfair that our music teacher/marching instructor went a little easier on me, so they started rumors about me having some terribly contagious disease and warned everyone to stay away from me which was pretty pathetic. i was often absent from a week or two at a time because of chemotherapy sessions, which made their stories to others more convincing. anyway, i finally confronted the entire band and told them about my condition and asked if anyone had questions and if they did to ask. well it worked and everyone stopped talking bad things and finally accepted me as a normal person then on. that was during my sophomore year, but as i got into my junior year my doctor put me on IVIG and that added with the chemotherapy was a lot to handle and i got really sick and was constantly absent. i started falling behind a lot because i had a lot of AP classes so i went on independent study to work at my own pace. i did that for the second semester of my junior year and ended up finishing high school a year early, so now i'm in college. i was kind of sad about missing out on my senior year, but my friends are always bringing me in as a guest to dances and other "senior events" so i'm not really missing out anymore. i guess that was basically my high school experience. anyway i hope my stories are too boring hehe.

take care,

susan

[Guest guest]

thank you cari =]. when was brian diagnosed? and what kind of symptoms did he have? is he in school right now? if so, how are his peers treating him?

i'd like to get to know more about him. by the way, where are you from? and does the weather affect him in any way?

hope to hear from you,

susan

[Guest guest]

... What's your major? Annette

-----Original Message-----From: ditzyxgyrl@... Sent: Thursday, April 26, 2001 9:59 PMTo: OurMyositis Subject: Re: What Do You Get For a First Anniversary?hey vicki, well pm and high school was really rough actually. i didn't get to attend the same high school with all of my friends from junior high, so entering high school i had to make a whole new set of friends. i gave my counselor, teachers, and principals letters explaining my condition which helped because i was allowed to get up for water or use the restroom whenever i needed and i also got extentions on my homework whenever i was absent from being sick or doctor appointments. making friends was okay because i looked normal so no one really thought i was sick. as i grew closer to my friends, thats when i informed them and they were really understanding about it, telling me if i ever needed anything they'd be there. the harder part though was dealing with those who didn't know me very well, mainly those who were in marching band with me that didn't talk to me much. they knew i had "health issues" but didn't know exactly what and they thought it was unfair that our music teacher/marching instructor went a little easier on me, so they started rumors about me having some terribly contagious disease and warned everyone to stay away from me which was pretty pathetic. i was often absent from a week or two at a time because of chemotherapy sessions, which made their stories to others more convincing. anyway, i finally confronted the entire band and told them about my condition and asked if anyone had questions and if they did to ask. well it worked and everyone stopped talking bad things and finally accepted me as a normal person then on. that was during my sophomore year, but as i got into my junior year my doctor put me on IVIG and that added with the chemotherapy was a lot to handle and i got really sick and was constantly absent. i started falling behind a lot because i had a lot of AP classes so i went on independent study to work at my own pace. i did that for the second semester of my junior year and ended up finishing high school a year early, so now i'm in college. i was kind of sad about missing out on my senior year, but my friends are always bringing me in as a guest to dances and other "senior events" so i'm not really missing out anymore. i guess that was basically my high school experience. anyway i hope my stories are too boring hehe. take care, susan