Someone I know with my disease just died

[Kira]

I don't want to give a lot of details because I want to respect the privacy of my friend and her family... but a girl I know passed away from the same disease that I have on Friday. She was on hospice care for a while and had kidney and heart failure, so we knew it would happen eventually... but it is still hard to hear. I feel so badly for her family and for the other young women I have gotten to know with this damn disease... it is so hard to see someone my own age die from the same thing I have. It is one thing to know in your mind that it can happen because this disease is slowly wrecking my whole body. It is another thing entirely to have someone you know and care about pass away from it. It makes it too real.

[satchelle]

Kira,

I'm so sorry....my thoughts and prayers are with you. Try not to let it get you down, just remember to cont to take good care of yourself

Satch

[Bobbi]

(((( Gentle Hugs, Kira )))).

[GardeniaGirl]

(((kira)))

That has got to be very difficult...you're right, its one thing to know it intellectually, another to know someone who is afflicted with your same condition, and to watch what the outcome can be.

I would imagine it makes you feel more afraid? helpless?

Maybe posting about your feelings here will help you a bit.....if you feel up to that.

Please take good care of yourself.

[Mark N]

kira, sorry to hear about your friend. It is hard when reality slaps us in the face and makes us deal with our own mortality.

[911]

hugs ((((kira))))

[ErinENj]

Kira,

I'm so sorry. My prayers are with you and your friend's family. I can't even imagine how hard this is for you. If there's anything I can do, please let me know.

Again, I'm so sorry.
<<HUG>>

[curiousforever]

Sorry to hear that.

Hugs and prayers.

[GJZH]

Kira,

Sorry to hear this about your friend...I will keep you and your friend in my thoughts and prayers..

[Kathi49]

Kira,

Hugs from me too. I know it must be an awfully difficult time. :(

[BrokenBladder]

((((Kira)))) I'm sorry for the loss of your friend. That's a deep hurt, but you have to keep up your positive attitude.

[jena1225]

Kira - So sorry to hear about your friend. Although I am sure it is very hard, please try not to let it get you discouraged with YOUR health issues. Your mental health and attitude can be so important in how your condition progresses.

Our bodies and fates are all different, so your fate is not neccessarily hers :)

[jimac]

Kira,
I am so sorry for your loss.
My prayers are also with you and both families.
Jim

[Scooby]

Kira,
I'm so sorry to hear about your friend, I have you in my prayers, and your friends family also.

Scooby

[Lea]

Big hugs Kira. You and your friend's family are in my prayers.

[Diandra]

Hi Kira,
My condolences on losing your friend.
Please take the very best care of yourself and know we are all
here for you.

You are in my prayers,
Diandra

[shotspine]

((((((((((((((((((((((Kira)))))))))))))))))))))))

I am so sorry to hear such sad news. I hope you can put this in context and not assume you are going to follow her same path. Don't lose your amazing strength, and faith that something good is just around the corner for you.

My thoughts and prayers for you, and her family!

Many Blessings!

[Kira]

Thanks, everyone. It has just been sort of hard, not only because of feeling terrible for her family and close friends, and missing having her around to email, etc... but because the seriousness of this disease is impossible to ignore when this stuff starts happening. There are a handful of young women with this disease who I have met online. The past year has just really been a bad year all around; seems like almost everyone in our little 'group' has had a big decline. A couple of them are on hospice now; one went from working and even volunteering at a summer camp this year to being flat on her back in the hospital from Sept to March, having to learn to walk all over agan. Another one has been in the hospital since October, with no discharge date on the horizon. It is just so hard to watch them get so sick and know that with any attack I could get that sick, too. Each time I get rhabdomyolysis, there is a 30% risk of kidney failure. And I have had NINE episodes of rhabdomyolysis in the past TWO years, so my chances of getting kidney failure at some point are pretty high. So that is scary. I don't know. My friend who just died... she died of kidney and heart failure. She had made the decision not to do dialysis because the rest of her body was too sick. Like I said, it is just too real.