Re: Just joined group

June 20, 2004

Hi Kim.. welcome to the group... We are all a friendly, cool bunch!!!! My son Ethan has just turned 5. Hes the only one of my four boys who has BPES. He has developmental delays and low muscle tone which makes him unable to be toilet traned which is a real nusience. You dont say how old Brock is. Ethan has only had one surgery on his eye but has really improved his outlook. Photos of him and my other boys can be seen in the album under Ethan C. Ethan has just started at school with 18 hours teacher aide time per week, which involves nappy changes and helping him with his lunch, and swimming as he has very poor balance in water. He has just started at the riding for disabled.. horse riding which will be great for him. you also dont say where you live?? We are in NewZealand... bye for now

Leah

blepharophimosis just joined group

Hi my name is Kim and I have a son,"Brock" with bpes. I have never talked to anyone else who has a child with this, or been in any type of support group before. He has had 2 eye surgeries already in his life and has had 2 surgeries on his clubfoot. I was just told today by a psychologist that he may have a low IQ or mild menal retardation. He is developmentally delayed I know, but he seems very bright to my husband and I. Does anyone have any experience of children older, or adults who may be labeled like this? Also, Brock has speech delays and I think that may be affecting the test results. Thanks, Kim McNatt

April 2, 2005

Nice to see you here, ! I think that is fantastic about the Weight

Watchers...I should try it too. I have been noticing lately that I cannot eat

much. I don't know why and I know WW is about portions and amounts. There is

something definitely not right...the other day I had a small yogurt which

went down fine. Then for dinner I had a hamburger. I had a hard time getting it

down, and then I felt sick all night long and had to go to bed early.

Last night I went out to eat with some friends and they're like, " Why are

you not eating? " I wasn't aware that I did not really touch my meal. Now this

has me pretty scared, cuz it never happened before. I am losing a little

weight,but not a lot which is disheartening because with these eating habits

you'd think I'd be thin as a stick.

Perhaps if I go to WW and they give me a diet plan with good foods, I can

eat small amounts and stay healthy. I mean, have you ever heard of this

happening? I really think the days I take Gleevec it swells something up

inside

and I cannot eat, yet I dont' lose a lot of weight. , are you on Gleevec

and how much? Did you ever have weight gain from Gleevec? - Lynne A.

April 2, 2005

Hi ,

It's good to see you here and good to hear that you're feeling

good. I'm sure stopping the Inf and Neupogen has as much to do with

you feeling better as does the weight loss. Can you tell us why you

stopped? Are you considering stopping everything soon?

Take care,

Tracey

>

> I wold like to thank Lynne for letting me know about the group.

It is

> great to see a lot of old " faces " . I was wondering what happened

to

> everyone since I left Rob's group. Hope every one is ding well.

Just

> to let everyone know, I have been on Weight Watchers for about 3

> months now. I have lost about 20 punds, and feel so much better.

I

> have also stopped using INF and Neupogen. Will be seeing Dr.

Mauro in

> August.

>

> Boca Raton.

May 28, 2007

Christel - welcome. I am fairly new here myself. I have posted off and on for

a few years,

but never consistently. You find many supportive and knowledgable folks on this

group.

Please try to take your husband to your rheumatologist appt with you if you can.

My

husband has had to learn how terrible and serious this disease can be. It

wasn't until

about a year-and-a-half ago when he came home from work to find me trying to get

to

the bathroom using the spongemop as a cane and screaming in pain from a terrible

knee

flare. I think meds have come a long way so be hopeful!

>

> Hello to the group.

>

> I just found the group and I have a feeling I will be taking part in the

> group in the coming weeks. Let me give a little background.

>

> When I was 14 I was given a diagnosis of JRA and was put on many many meds.

> That was in 1989 and by the time I was 20 I was in complete remission per my

> doctor. Well here I am at 42 with 2 small children, my son will be 4

> in August and my Daughter just turned 1 in February, and it has

> come back with a vengeance. I had a physical about 2 weeks ago and asked my

> doctor to check for it and sure enough it came back positive so on June 6th

> I have my first RA doctor appointment.

>

> When I was a teen it was hard to get a diagnosis as it crept up on me, but

> this time, every single joint in my body is effected, especially my knees,

> hips and hands. Of course I really need those for my kids. My husband

> really does not understand and is not very helpful with me and to top it all

> off I got diagnosed with Asthma last fall and was told that we need to get

> rid of our 2 cats, which he refuses to do. He really is not a bad person,

> but our marriage was falling apart before my medical stuff started due to

> financial stuff and now this starts, which will be even a bigger financial

> burden since I have been a stay at home mom and wanted to get a part time

> job but now really can't with this starting.

>

> I just am feeling like I am in a deep dark pit, I am so tired, I hurt all

> the time and have no support. My house is filthy, one of the cats is peeing

> and pooping everywhere because he hates having the kids in the house and

> that just compounds everything. My life is just spiraling downward and this

> RA diagnosis is just the nail in the coffin for me!!

>

> Thanks for letting me vent some here. If anyone has any ideas on some newer

> meds that I don't know about in 22 years, please let me know. I want to be

> well armed when I go to the doctor and want to get this under control as

> quickly as possible as I have to take care of my kids.

>

> Go with God!!

>

> Christel

>

May 28, 2007

Welcome Cristel, that spelling is different. I like it!!! You vent here any

time you need to. I don't post a lot but I read them all. You will get a lot

of suggestions and comfort here.

Soft hugs & Prayers,

Fayray

>From: " Christel Trulson " <cetrulson@...>

>Reply-

>< >

>Subject: [ ] Just joined Group

>Date: Mon, 28 May 2007 09:53:50 -0400

>

>Hello to the group.

>

>I just found the group and I have a feeling I will be taking part in the

>group in the coming weeks. Let me give a little background.

>

>When I was 14 I was given a diagnosis of JRA and was put on many many meds.

>That was in 1989 and by the time I was 20 I was in complete remission per

>my

>doctor. Well here I am at 42 with 2 small children, my son will be 4

>in August and my Daughter just turned 1 in February, and it has

>come back with a vengeance. I had a physical about 2 weeks ago and asked

>my

>doctor to check for it and sure enough it came back positive so on June 6th

>I have my first RA doctor appointment.

>

>When I was a teen it was hard to get a diagnosis as it crept up on me, but

>this time, every single joint in my body is effected, especially my knees,

>hips and hands. Of course I really need those for my kids. My husband

>really does not understand and is not very helpful with me and to top it

>all

>off I got diagnosed with Asthma last fall and was told that we need to get

>rid of our 2 cats, which he refuses to do. He really is not a bad person,

>but our marriage was falling apart before my medical stuff started due to

>financial stuff and now this starts, which will be even a bigger financial

>burden since I have been a stay at home mom and wanted to get a part time

>job but now really can't with this starting.

>

>I just am feeling like I am in a deep dark pit, I am so tired, I hurt all

>the time and have no support. My house is filthy, one of the cats is

>peeing

>and pooping everywhere because he hates having the kids in the house and

>that just compounds everything. My life is just spiraling downward and

>this

>RA diagnosis is just the nail in the coffin for me!!

>

>Thanks for letting me vent some here. If anyone has any ideas on some

>newer

>meds that I don't know about in 22 years, please let me know. I want to be

>well armed when I go to the doctor and want to get this under control as

>quickly as possible as I have to take care of my kids.

>

>Go with God!!

>

>Christel

_________________________________________________________________

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Live Hotmail.

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_HM\

_mini_pcmag_0507

May 28, 2007

Christel Trulson wrote:

>

> >I got diagnosed with Asthma last fall and was told that we need to get

> rid of our 2 cats, which he refuses to do.

>

You can buy special shampoo to rid the cats of the dander which is what

you're allergic to. I also have asthma and can't be around cats. You

also can bathe and rinse the cats with distilled water and that will rid

them of the dander. I know this because my daughter is a cat lover and

I spent many years with cats in the house despite me being allergic to

them. If your husband wants to keep the cats, he can bathe them to rid

them of the dander. That was the deal I made with my daughter and she

wanted them bad enough to do it.

>

> >Thanks for letting me vent some here. If anyone has any ideas on some

> newer

> meds that I don't know about in 22 years, please let me know.

>

When you visit the rheumy for the first time, he'll discuss the meds

available. You're going to be amazed at the newer meds available to

treat RA compared to what they used 22 years ago.

Nina

May 28, 2007

The spelling is German, my mother is named that way also. No one here in

America can spell it correctly!!

I hope to get a lot of suggestions and support, when I think of how to take

care of the kids I get really overwhelmed!! If we had the money I would

love to hire a teen as a mother's helper for the summer!

Thanks and will keep you up to date with what happens!! I will try to get

the hubby to come with me!

Go with God!!

Christel

[ ] Just joined Group

>Date: Mon, 28 May 2007 09:53:50 -0400

>

>Hello to the group.

>

>I just found the group and I have a feeling I will be taking part in the

>group in the coming weeks. Let me give a little background.

>

>When I was 14 I was given a diagnosis of JRA and was put on many many meds.

>That was in 1989 and by the time I was 20 I was in complete remission per

>my

>doctor. Well here I am at 42 with 2 small children, my son will be 4

>in August and my Daughter just turned 1 in February, and it has

>come back with a vengeance. I had a physical about 2 weeks ago and asked

>my

>doctor to check for it and sure enough it came back positive so on June 6th

>I have my first RA doctor appointment.

>

>When I was a teen it was hard to get a diagnosis as it crept up on me, but

>this time, every single joint in my body is effected, especially my knees,

>hips and hands. Of course I really need those for my kids. My husband

>really does not understand and is not very helpful with me and to top it

>all

>off I got diagnosed with Asthma last fall and was told that we need to get

>rid of our 2 cats, which he refuses to do. He really is not a bad person,

>but our marriage was falling apart before my medical stuff started due to

>financial stuff and now this starts, which will be even a bigger financial

>burden since I have been a stay at home mom and wanted to get a part time

>job but now really can't with this starting.

>

>I just am feeling like I am in a deep dark pit, I am so tired, I hurt all

>the time and have no support. My house is filthy, one of the cats is

>peeing

>and pooping everywhere because he hates having the kids in the house and

>that just compounds everything. My life is just spiraling downward and

>this

>RA diagnosis is just the nail in the coffin for me!!

>

>Thanks for letting me vent some here. If anyone has any ideas on some

>newer

>meds that I don't know about in 22 years, please let me know. I want to be

>well armed when I go to the doctor and want to get this under control as

>quickly as possible as I have to take care of my kids.

>

>Go with God!!

>

>Christel

_________________________________________________________________

PC Magazine's 2007 editors' choice for best Web mail-award-winning Windows

Live Hotmail.

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migratio

n_HM_mini_pcmag_0507

May 29, 2007

Welcome to the group Christel

I am sorry to hear your RA is back. At least you got a quick diagnosis this

time and you

can start treating it right away. If they get you on some meds you could

probably start

feeling better and get a part time job.

I was also recently diagnosed with Asthma. I would be upset with my hubby

though.

He has to see how you are suffering. I know sometimes it is hard for others to

know how

we feel when we don't look bad on the outside but still he should be more

supportive.

Feel free to vent here anytime and know that there are a lot of new meds out

there since

you got sick. I can think of at least three, Arava, Enbrel, Humira and

Remicaide.

Usually they start out with the least expensive and then go from there I

believe...

Good luck and hugs to you.

Joy

Christel Trulson <cetrulson@...> wrote:

Hello to the group.

I just found the group and I have a feeling I will be taking part in the

group in the coming weeks. Let me give a little background.

When I was 14 I was given a diagnosis of JRA and was put on many many meds.

That was in 1989 and by the time I was 20 I was in complete remission per my

doctor. Well here I am at 42 with 2 small children, my son will be 4

in August and my Daughter just turned 1 in February, and it has

come back with a vengeance. I had a physical about 2 weeks ago and asked my

doctor to check for it and sure enough it came back positive so on June 6th

I have my first RA doctor appointment.

When I was a teen it was hard to get a diagnosis as it crept up on me, but

this time, every single joint in my body is effected, especially my knees,

hips and hands. Of course I really need those for my kids. My husband

really does not understand and is not very helpful with me and to top it all

off I got diagnosed with Asthma last fall and was told that we need to get

rid of our 2 cats, which he refuses to do. He really is not a bad person,

but our marriage was falling apart before my medical stuff started due to

financial stuff and now this starts, which will be even a bigger financial

burden since I have been a stay at home mom and wanted to get a part time

job but now really can't with this starting.

I just am feeling like I am in a deep dark pit, I am so tired, I hurt all

the time and have no support. My house is filthy, one of the cats is peeing

and pooping everywhere because he hates having the kids in the house and

that just compounds everything. My life is just spiraling downward and this

RA diagnosis is just the nail in the coffin for me!!

Thanks for letting me vent some here. If anyone has any ideas on some newer

meds that I don't know about in 22 years, please let me know. I want to be

well armed when I go to the doctor and want to get this under control as

quickly as possible as I have to take care of my kids.

Go with God!!

Christel

May 29, 2007

Hi and Welcome Christel.

I don't get it! Your husband is refusing to get rid of the cats, even though

you also now have Asthma? AND one of the cats is pooping and peeing all over

the house? What is WRONG with that man? Does he enjoy living in the filth

and stink? Those cats MUST go! It's a HEALTH issue for crying out loud!

If he doesn't want to help around the house, then he should be getting you

some help to clean the house, a house cleaning service that can come around

once a week or something.

I am so sorry you are going through all this. I am sorry you are hurting so

badly.

Carol

In a message dated 5/28/2007 7:00:20 A.M. Pacific Daylight Time,

cetrulson@... writes: