Re: Trying to explain our disease.......frustration

[Guest guest]

,

You can explain to people until you are blue and they will choose not to understand at all. I think it is a mechanism to protect themselves and you. They think the disease will go away and they want you to be like you were. You being sick is hard for your family and it scares them. The only thing you can do is make them listen to you when you need to talk and demand they listen. This is what I do my daughter will go off about how I am always talking about being sick and she is sick of hearing about it. My answer is I have to live this way for the rest of my life every day. You do not support me at least you can listen. My family refused to go to classes offered to them by transplant they all said we know how to support the transplant team just rolls their eyes and they understand. I had to change my attitude towards my family and friends and take on why they won't support me. I did hear a person once who asked me about support for her boyfriend her response was I feel like its my problem and I need time myself. You must understand that they will never understand. You have to teach them. Don't waste time and energy it is too difficult for them to take it on. But giving them information is the best way to get there. I volunteer for Donor Awareness so I take what ever information to my friends and family and from here. It has taken me 2 years to get them to this point of when they hear the word transplant they pay attention.

gayle/trans.6-99

galye@... @`

\I/

[Guest guest]

Hello !

That could be so frustrating. I have AIDS along with Cihrrosis and truly don't

understand why some people choose to treat AIDS Patients as if they were

leperds. I'm not trying to be judgemental by any means but if those people

would posses a tiny part of humility and compassion in their heart I'm sure that they wouldn't behave that way. Most Aids patients that I have met including myself are very self concious about our disease so I always when I

go to someone elses home use extreme caution including my family which

they get mad at me when they see me spray the basin and bathroon counter

after each use but I do it to feel comfortable and for their protection since I

would never do anything to give this illness to someone else. Besides we were all created in God's image and are all His children so I can't understand

the persecution but unfourtanely those are the days that we are living on. That is why I surround myself with people from my church since they are so

undertsanding. Thank You for letting express myself. God Bless You!

Tony

[Guest guest]

Dear Joanne,

Actually, I did print that very article

and she “read it”! This was 2 months ago.

After my mom told my aunt, she then became

preoccupied with sheets and towels for the upcoming party. Which

is rather strange considering! My aunt said “she has AIDS?”

my mom said yes, obviously not connecting with what my aunt had said. When I

dropped in later, my aunt and uncle were staring at me like I was from mars.

The next day she told me what my mom said and I was beyond words. My sisters say

not to worry, but I am worried about my mother sometimes. I will have to

explain it to her all over again. I know she will get defensive. No one in my

family is concerned about my illness, so they know it is not AIDS, but AIH is

no picnic either.

Well, my dad is coming over this morning

and we are going to start on the vegetable garden. I have a septic field in the

backyard so I should get a big harvest!

Thanks!

[ ] Trying

to explain our disease.......frustration

she has started telling

everyone that I have AIDS!

She just doesn't understand it and this compounds my frustration. I

don't know who she has told. If I try to explain it again to her she

will say she understood the first time. Oh boy!

Oh, .I am so sorry. It is frustrating when we try to explain our

disease to someone and they say they understand now and get it all wrong.

I suggest this time you get a site which explains it..I think best would be

from the ALF (American Liver Foundation) homepage and PRINT it to let her

read. Then explain it is same category as rheumatoid arthritis. Perhaps

even listing other autoimmune diseases so she can understand....such as

printing our page on Sjogren's, etc.... Good luck!!!!!!!

(HUG) Joanne

[Guest guest]

Debby,

This is so true. I have a dear friend who has been HIV positive for 10

years. So far she has not developed signs of AIDS. This was found on

routine lab prior to a surgical procedure. She was single then and has since

married a terrific man who has been quite aware of her status since the 1st

date. Her life has such meaning and she is an inspiration to me daily. We

must all not give up and keep fighting the fight. Anything is possible.

[Guest guest]

, when I was first dx with a skin problem called dermatitis herpitiformus, my mom told everyone I had herpes! I nearly died! I realized it is frustrating to have this happen, but just wait it out. They will eventually realize they were wrong....but then, if you don't ever want to see any of these people, well......you have an "excuse".

I have had several dear friends die of AIDS and my heart was broken. AIDS is terrible, but now there is so much more that can be done to help out!

Take care....debby

[ ] Trying to explain our disease.......frustration

she has started telling everyone that I have AIDS!She just doesn't understand it and this compounds my frustration. Idon't know who she has told. If I try to explain it again to her shewill say she understood the first time. Oh boy! Oh, .I am so sorry. It is frustrating when we try to explain our disease to someone and they say they understand now and get it all wrong. I suggest this time you get a site which explains it..I think best would be from the ALF (American Liver Foundation) homepage and PRINT it to let her read. Then explain it is same category as rheumatoid arthritis. Perhaps even listing other autoimmune diseases so she can understand....such as printing our page on Sjogren's, etc.... Good luck!!!!!!! (HUG) Joanne

[Guest guest]

Dear Tony,

Thank you! I was just frustrated that in

explaining the disease to someone, particularly a relative, was met with “Oh,

you will be fine” to “ why don’t you

just stop drinking?” and then followed by “have a beer”. I

don’t drink and I don’t know if I’ll be fine.

I talked to my mom today, and she said she

understood the first time but that my aunt’s hearing aid must not have

been working right. I then asked her what she thought I had and she said “Oh,

it’s some kind of hepatitis, A or B or C”. I then said it is like

Lupus and she said, “Oh, I don’t understand that”. Ugh!

I am sorry that you are fighting this

battle with AIDS. I have worked with AIDS patients who needed an artificial eye

and I didn’t have to take too many precautions, just the same as for

everyone else. I believe you have to have a LOT of blood on a counter

for it to present a problem, as it is a fragile virus and cannot survive on a

counter for long. This was from an OSHA information sheet that I had when I

worked at Henry Ford Hospital in Detroit.

How are you doing now? I hope better than

the past few weeks? I was so sorry to hear about your grandmother.

Re: [ ]

Trying to explain our disease.......frustration

Hello !

That could be so frustrating. I have AIDS along with Cihrrosis and truly don't

understand why some people choose to treat AIDS Patients as if they were

leperds. I'm not trying to be judgemental by any means but if those people

would posses a tiny part of humility and compassion in their heart I'm sure

that they wouldn't behave that way. Most Aids patients that I have met

including myself are very self concious about our disease so I always when I

go to someone elses home use extreme caution including my family which

they get mad at me when they see me spray the basin and bathroon counter

after each use but I do it to feel comfortable and for their protection since I

would never do anything to give this illness to someone else. Besides we were

all created in God's image and are all His children so I can't understand

the persecution but unfourtanely those are the days that we are living on. That

is why I surround myself with people from my church since they are so

undertsanding. Thank You for letting express myself. God Bless You!

Tony

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[Guest guest]

Dear Gayle,

Wow, even after you had a transplant they

are so uncaring. I think they think the problem has been taken care of now,

like replacing a car battery. The news media would have you believe that every

part of the body can be replaced when it wears out. They don’t talk about

the reality, they don’t have time for that.

I will just keep plugging away at

providing information. I have noticed that people are starting to open up more

and ask me how I am doing. They seem more interested now.

That is really wonderful that you keep

busy, helping others who are just starting to go through this experience! I

would like to get more involved too.

I just came back from my dentist, as I was

way overdo for my checkup and my teeth really began to

hurt. He believes that the prednisone causes tooth sensitivity and gum

inflammation and recommended a fluoride rinse called “ACT anticavity Fluoride Treatment Rinse”. Everyone should try it if they are having tooth pain to

cold or sour foods. Otherwise I am doing fine he says! I will make sure it is

OK with my doctor before I try it. It has no alcohol in it.

Take care,

Re: [ ]

Trying to explain our disease.......frustration

,

You can explain to people until you are blue and they will choose not to

understand at all. I think it is a mechanism to protect themselves and you.

They think the disease will go away and they want you to be like you were. You

being sick is hard for your family and it scares them. The only thing you can

do is make them listen to you when you need to talk and demand they listen.

This is what I do my daughter will go off about how I am always talking about

being sick and she is sick of hearing about it. My answer is I have to live

this way for the rest of my life every day. You do not support me at least you

can listen. My family refused to go to classes offered to them by transplant

they all said we know how to support the transplant team just rolls their eyes

and they understand. I had to change my attitude towards my family and friends

and take on why they won't support me. I did hear a person once who asked me

about support for her boyfriend her response was I feel like its my problem and

I need time myself. You must understand that they will never understand. You

have to teach them. Don't waste time and energy it is too difficult for them to

take it on. But giving them information is the best way to get there. I

volunteer for Donor Awareness so I take what ever information to my friends and

family and from here. It has taken me 2 years to get them to this point of when

they hear the word transplant they pay attention.

gayle/trans.6-99

galye@... @`

\I/

Group

Rules

1. Please no religious, political, race or sexual

preference discussions.

2. NO slamming of other members, advertising or

vulgarity. Thank you!

To UNsubscribe send a blank e-mail to

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Your

use of is subject to the Terms of Service.

[Guest guest]

Hi Debby!

My goodness, I had no idea about that medication. I'm not on it yet so I guess

I haven't developed that complication. About the nurse stepping back for fearing of contracting AIH by your coughing; she must not have spend too much attention while in medical school. But with all honesty even do I try to

interact in society the best that I can; I'm more concerned in how God feels

about me and as long as I know that I'm in good terms with Him I know that

I'm going to be okay because no matter what happens I will be victorious. The people that decide to be ugly I usually send them in for a loop since no matter how someone behaves with me, my response is always guided by the challenge that God's gives to us to "Love Thy Brother" which is extremelly difficult but quite rewarding. Take Care and God Bless You !

Tony

[Guest guest]

Hi Tony,

God Bless you.

Lyn/Ark

rmeeks3230@... wrote: Hi Debby!My goodness, I had no idea about that medication. I'm not on it yet so I guessI haven't developed that complication. About the nurse stepping back for fearing of contracting AIH by your coughing; she must not have spend too much attention while in medical school. But with all honesty even do I try tointeract in society the best that I can; I'm more concerned in how God feelsabout me and as long as I know that I'm in good terms with Him I know thatI'm going to be okay because no matter what happens I will be victorious. The people that decide to be ugly I usually send them in for a loop since no matter how someone behaves with me, my response is always guided by the challenge that God's gives to us to "Love Thy Brother" which is extremelly difficult but quite rewarding. Take Care and God Bless You !Tony