Re: Re: A Big Thnk you - Bonita

[Guest guest]

Hi Bonita, i sure can relate to your story. I was hospitalized for two months back in Jan 99. I was 25 then. My mom was so over protective and just felt that since i had the trach and the stent put in that my life, what i new as normal was over. What she was doing to me was scaring me even more. I remember being in the hospital having panic attacks thinking i wasn't breathing because i felt her fear. I was feeding off of that. I didn't fully understand what had all happened to me either. I was in a medically induced sleep for two weeks. My doctors had never seen anyones airway as damaged as mine in more than one place. My trach was closing and my left bronch was floppy and my breathing was very poor. I was in a bad flare.

What i want to say is that, I am so glad that your nephew is keeping a positive attitude and not letting this diease limit what he wants to do. When i got out of the hospital my mom was in such a state of shock. She was upset with me one day for going to the drug store to get my medicine. She felt that that was to much for me to be doing. That was 3 years ago now i am married and doing so much better. She still gets over-worried when i have to drive a distance to do something. She always ask is your husband gonna go with you or how do you feel do you want me to go with you. I tell her no, i am okay. It makes me not want to be around her at times. I am 28yrs old now. I do love her, but i don't feel sorry for myself. I do don't want her feeling sorry for me either. I have been off of work Since Jan 99. I do plan to go back hopefully at the end of this year part time. As long as my company if giving me the time in am going to make sure i am really better and very stable before i go back.

Tell your nephew to keep on doing what he can. Don't let this disease take over his life. It's great that you are here for your nephew and learning more information about this disease. It does affect everyone in the family. I'll stop venting here. I hope he does decide to get online one day when he is ready.

Take care

Re: A Big Thnk you - Bonita

Bonita,Good for you, for maintaining your positive perspective and encouraging your nephew to join us. I know it has helped to give me much more hope than the medical literature that I read, so I hope it could do the same for your sister and nephew.Take care!> ,> > > Hello it is me, Bonita and i just wanted to say that what you said about > RP is fatal, my nephew Gabby, is 21 and just those 3 words...( it's not > fatal) you will never know how you have given me a blessing, my sister > Stacey, mother of Gabby is going crazy thinking that he is has this fatal > disease and she is such a mother hen, ( which of course, any mother or a > caring heart and loving support goes threw on her own which she feels she has > only one day with him and is set on thinking her son is close to death) which > honestly it upsets me so, that i explain to her stopping putting your mind > set that way, enjoy what you have and live it the fullest but again i don't > understand, she has him so unidependent he wants to work not full time but > some and he does goes to college but she only has him 2 times per week and he > tells her constantly he feels OK, of course he does have his bad days, but > still he wants to do something besides stay at home and be waited on...i have > made many attempts to get them to join the group, because here he can pour > all emotions with a loving and honest support group who can relate to him. > but she doesn't see it that way, so i just now and then mention the group at > times just to let him know i still support the group and now i consider us a > part of the cyberspace family. And that i will always be within the group for > always. So again let me thank you from the bottom of my heart for just those > words.> > Love and my warm prayers and thoughts are with you and the group.> BonitaDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

In a message dated 1/5/02 6:29:05 PM Pacific Standard Time,

Ronnielyn27@... writes:

<< She always ask is your husband gonna go with you or how do you feel do you

want me to go with you. I tell her no, i am okay. It makes me not want to

be around her at times. I am 28yrs old now. I do love her, but i don't feel

sorry for myself. I do don't want her feeling sorry for me either. >>

.. I'm 50 years old and my family does the same thing to me. Who's

going with you? You can't go by yourself. I've gottent to the point that I

don't even tell them anymore, I just do it. LOL I too love my daughters and

husband, but give me my normal space. Thanks for sharing your story with us.

You are always such an inspiration.

hugs

[Guest guest]

Hey, Girls. I don't have RP but I'm 75 years old and have had heart attack

(5 bypasses) and my family would breath for me if they could. All I want is

some S P A C E. I tell my hubby that he just wants to control me. Is that

some kinda mean!!!! Drives me over the wall. lol Heck, I'm in better health

than any - - I know what's wrong with me and he has no clue about what's

wrong with him. I have an idea what you girls feel.

Jo

Re: Re: A Big Thnk you - Bonita

>In a message dated 1/5/02 6:29:05 PM Pacific Standard Time,

>Ronnielyn27@... writes:

>

><< She always ask is your husband gonna go with you or how do you feel do

you

>want me to go with you. I tell her no, i am okay. It makes me not want to

>be around her at times. I am 28yrs old now. I do love her, but i don't

feel

>sorry for myself. I do don't want her feeling sorry for me either. >>

>

>.. I'm 50 years old and my family does the same thing to me. Who's

>going with you? You can't go by yourself. I've gottent to the point that

I

>don't even tell them anymore, I just do it. LOL I too love my daughters

and

>husband, but give me my normal space. Thanks for sharing your story with

us.

> You are always such an inspiration.

>

>hugs

>

>

>DISCLAIMER!!

>WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

Jo, , , and probably most of us:

I know my limits and how far I can go. You know what you can do. Why?

Because we're capable, smart, determined, and have enough faith in ourselves

to keep on keeping on. My family knows that it's not wise to tell me that I

can not do something because that's usually a challenge I just can't resist.

I know they aren't where I am emotionally because I'm the one with the

diseases that I live with each day. But living, really living, is just what

I intend to do. We all know just how precious each day is. My wish is that

the families would just enjoy each blessed day right along with us as we

travel on this journey. After all, their journeys on this earth will come

to an end as well.

Jo, at 75 you have a lot of wisdom and really inspired me to share my

thoughts about my family's need to tell me what I can't or shouldn't do.

Or, maybe it was the 3 cups of coffee! Anyway, have a blessed Sunday. I

just love this group!

Re: Re: A Big Thnk you - Bonita

>

>

> >In a message dated 1/5/02 6:29:05 PM Pacific Standard Time,

> >Ronnielyn27@... writes:

> >

> ><< She always ask is your husband gonna go with you or how do you feel do

> you

> >want me to go with you. I tell her no, i am okay. It makes me not want

to

> >be around her at times. I am 28yrs old now. I do love her, but i don't

> feel

> >sorry for myself. I do don't want her feeling sorry for me either. >>

> >

> >.. I'm 50 years old and my family does the same thing to me.

Who's

> >going with you? You can't go by yourself. I've gottent to the point

that

> I

> >don't even tell them anymore, I just do it. LOL I too love my daughters

> and

> >husband, but give me my normal space. Thanks for sharing your story with

> us.

> > You are always such an inspiration.

> >

> >hugs

> >

> >

> >DISCLAIMER!!

> >WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

> RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

> BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

> PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

> TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

> >

> >