Re: Re: Friends and family-Looooong reply! - JO :-)

[Guest guest]

In a message dated 5/30/00 11:16:54 AM Eastern Daylight Time,

rachelvk67@... writes:

<< Hope this sheds some light on the reasons why some of us do not have

the support that we need, sorry it turned into such a long winded

response, I have a very bad habit of doing that :-)

Just remembered that I haven't said " welcome " Jo! So here it

is " WELCOME!! "

:-) >>

thank you for the welcome, but most of all thank you for the well thought out

and wonderful post.

I have been the gamet of things, but I think you are right in some respects.

I have this hereditary illness that is something we have known I had since

age 11. I was not particularly ill with it until the age of 30. I had

children and a basically normal life. However, my uncle was dying of this

disease and I had a constant reminder of life to come. At age 30 I suffered

a heart attack, just months after my uncle had died at age 45. That was the

beginning of life changing for me.

Since then I have had another heart attack, one major and 5 minor strokes,

migraines that are constant and debilitating.

Then you add a myriad of other things, Diabetes, liver dysfunction, arthritis

and such.

But you are right, most people do not see me unless I am having a good day,

so they do not know that I am as ill as I am.

However, most of my friends and family have been around when I have been

seriously ill with one of the maladys, and so they know.

I have an excellent doctor who believes me and searches for answers when I

come in with something " new " . So that is a big help too.

I can not imagine having to search for answers. And not being believed.

I know well that feeling of being beaten, I refer to it as being hit by a

Mack truck. But I can call and get assistance from friends or family when I

can not get out of bed.

I am very fortunate indeed.

Thank you for your post. I had never had to consider those possibilities.

BTW - I am extremely fortunate in another respect. I think I had mentioned

that I recently celebrated my 50th birthday with a wonderful birthday party.

it was a real roadmark for the family. I have now lived longer than anyone

else in the family that has had IHSS. This gives great hope to the ones

younger than me. And I intend to see 85! I just wish it didn't hurt so much

most days.

Hugs,

Jo

[Guest guest]

"This seems to be what Aisha has experienced, prior to diagnosis, and is what many of us here live with daily, the thought that no one believes us, or can really understand what we are coping with , cause there can often be so few outward signs!"

Just thought I'd add that my mother emailed my aunt last night re: Imuran and my blood tests (which are ok - I'll tell you bout that in a minute) and she told my mother that she "Would Never Take Imuran."

My mother said "Well its either the Imuran or the Neurosarcoidosis?" (no reply as yet.

My husband however informed my parents and I that she doesn't have to worry about heart or brain diseases as she has neither! LMAO!!!

Love you all...

Aisha.

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaMailing list: AishaElderwyn-subscribeegroupsBeing Sick:

[Guest guest]

"I have now lived longer than anyone else in the family that has had IHSS. This gives great hope to the ones younger than me. And I intend to see 85! I just wish it didn't hurt so much most days. "

Dear Jo,

Whoo hoo! And I hope that we are all well enough to get to your 85th birthday celebrations!

I also wish you didn't hurt so much these days.... pain is exhausting.

*HUG*Love A.

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaMailing list: AishaElderwyn-subscribeegroupsBeing Sick: