Lupus FAQ » Lupus » My future health

My future health

Question:

Hi everyone.  I ran into a friend who was, in the past, anorexic.  She is NOW having heart problems do to the years ago of restricting.  This is scarey to me because damage can pop up later, even when we think we have gotten away with no serious heED related health problems.  It’s kind of like those stories of alcoholic finding out after years of sobriety that they are dying of liver problems.  I’d like to say that, had I known about this type of situation, I would have never become anorexic, but that isn’t true.  I would have just rationalized that "that’s her.  It won’t happen to me." Just wanted to share.  Love to you all.  Kal

Response:

kal, just email bstreet666 and any sort of denial on what cna happen will be blown away shell

Response:

Hi, Kal, spoiler for talk of death… / / / / / / / / Sometimes my own mortality frightens me.  Will I wake up in the morning to a new day with birds singing, beautiful flowers putting on a colorful spring show, and my doggie asking for breakfast?  Or will my heart stop in the night and I’ll die alone, without getting a chance to say goodbye?  Sometimes I’m afraid to go to sleep. I have even talked with my parents about what I want to happen after I die, just in case.  For instance, I told them that I don’t want to die here but if I do then I don’t want to be buried within about 300 miles of this place.  I threatened that if I were, I’d come back from the grave and bash on the head the responsible parties. Can’t decide if I want cremation or burial, though.  It IS only a body, flesh and blood.  It won’t even be me anymore.  Still, I have never liked fire but I also don’t want to be stuffed six feet under.  I think I’ll let my family decide on that one.  Whatever will give them the most peace.  I’d donate my body to science in some form but I don’t think that would make them too happy. I also make sure to take out incriminating binge trash as soon as I can and I’ve burned some journals.  I’ve also warned my mother that I love her VERY much and if she ever rifles through my stuff after I’m gone and finds something that indicates otherwise, well, I STILL love her very much.  Sometimes I have moods just like everybody else. Take care, everybody. Love, Butterflies ~In the event of rapture, this account will be unmanned.  Meanwhile…

Response:

- Hide quoted text — Show quoted text – Hi, Kal, spoiler for talk of death… / / / / / / / / Sometimes my own mortality frightens me.  Will I wake up in the morning to a new day with birds singing, beautiful flowers putting on a colorful spring show, and my doggie asking for breakfast?  Or will my heart stop in the night and I’ll die alone, without getting a chance to say goodbye?  Sometimes I’m afraid to go to sleep.

I am often afraid to sleep, but not because I am afraid I will die- I’m afraid of what I will dream. I am not afraid of death.  I just don’t want to suffer in the getting there. I also HAVE to live until my kids are grown up.  My oldest would have no healthy place to go-to his legal father, an abusive drunk and drug addict, or my mom-that would be sooooo aweful.  My daughter would be wrecked without me to keep her father from spoiling her rotten and my youngest would be very damaged just from me leaving him.  Well, they all would, but him the most. He’s adopted and was born alcohol affected and drug addicted, was severely abused and neglected in his first 5 1/2 months of life, and was completely unattached.  I have worked very hard with him to resolve these issues and he is very attached to me.  Biologically, he is my sister’s child.  Yes, my own sister damaged this innocent and wonderful little person so badly.  So, until the children grow up at least, I cannot die.  Although I would often rather be dead than go through the he** of anorexia and all the crap that resulted in it. – Hide quoted text — Show quoted text -I have even talked with my parents about what I want to happen after I die, just in case.  For instance, I told them that I don’t want to die here but if I do then I don’t want to be buried within about 300 miles of this place.  I threatened that if I were, I’d come back from the grave and bash on the head the responsible parties. Can’t decide if I want cremation or burial, though.  It IS only a body, flesh and blood.  It won’t even be me anymore.  Still, I have never liked fire but I also don’t want to be stuffed six feet under.  I think I’ll let my family decide on that one.  Whatever will give them the most peace.  I’d donate my body to science in some form but I don’t think that would make them too happy.

I am a doner, so anything that is useable when I am done with it is to go to who ever can use it.  What is left will be creamated and spread out in the wilderness of MT over a waterfall or river.  I know this isn’t legal, but it is what I want.  My mom knows and doesn’t like it, but I don’t care what she doesn’t like at this point in my life.  My husband knows also and has agreed. Take care Butterflies and thanks for sharing.  Love to you, my friend.  Kal

Response:

gosh butterflies spoilered 3 3 3 3 3 3 33 3 3 3 3 3 I also make sure to take out incriminating binge trash as soon as I can and I’ve burned some journals.

i also have a burial plot ready for me. its a sobering thought, but its a lot easier on the surviving family when decisions regarding death dont need to be made shell

Response:

you are profoundly sweet meg hugs shell

Response:

For instance, I told them that I don’t want to die here but if I do then I don’t want to be buried within about 300 miles of this place.

Why is this Butterflies? Just curious… Love Nikki "… lost in the darkness of my own circumstance, criticizing echoes leaving me awake in the night… the barrier and blockades that keep me safe and in control while I pretend that I am okay… "

Response:

Spoiler for talk of death * * * * * * * * * * * * * * * Because my mortality is questionable because of my illnesses, I have discussed with my fiance what I want. I want to be cremated…I cant STAND the thought of being buried in the ground. If possible, I want my organs donated, but again, this is unlikely because they have suffered damage from the Lupus, and if I die from lupus complications, chances are that it will be from organ failure (that’s the most common form of death for Lupus patients). Since my family is so scattered, I would either like each one to recieve a small amount of my ashes, or I would like to be taken to the Grand Canyon and have my ashes scattered there (this is unlikely though,…I doubt any of my family would travel to Arizona for this). Actually, I would like my "final" resting place to be next to my grandpa, who died 5 years ago. His ashes are with my grandmother in NY in the house that I grew up in (in fact, they are in the very room that was mine). Another consideration is to donate my body to science…because I have so many illnesses, I think it would be beneficial to donate it to research. Who knows, maybe all those scientists will be able to figure out why I got so sick at such a young age with very little family history. So, I am still kind of torn. I dont know if my family would want me to donate my body to science….but I think if I told them that’s what I want, then I think they might give in. I am not afraid of death. It’s been something I have had to address since becoming ill. Of course, i plan to fight until the end with all that I have. I dont plan on going anywhere soon, but when God decides its my time, there isnt much I can do. Nikki "… lost in the darkness of my own circumstance, criticizing echoes leaving me awake in the night… the barrier and blockades that keep me safe and in control while I pretend that I am okay… "

Response:

Butterflies, Shelley & Kal I just want you to know that Im sitting here crying.  I just want you to know.  Im not triggered or anything like that, just highly emotional and profoundly saddended….. I just want to make everything ok.  Thats my birthday wish and Im extending it out to all of ase-d.  Consider me the sensitized good witch of the west, tinkerbell without wings… Im sitting here singing you guys a lullabye… so hush little baby. blubbering and babbeling, meg Before you buy.

Response:

Hiya, Kal, keeping spoiler… / / / / / / I am often afraid to sleep, but not because I am afraid I will die- I’m afraid of what I will dream.

I’ve been there before.  Ugh.  But like I said, sometimes I fear I will die in my sleep.  I don’t want to die alone.  I want my mom to be there holding my hand, praying.  Oh, well, we can’t have everything, can we? It’s amazing how committed to your children you are.  They have a wonderful mother.  :) I am a doner, so anything that is useable when I am done with it is to go to who ever can use it.

Oh yeah, I remembered I want to donate, too.  (My family knows this.)  What is left will be creamated and spread out in the wilderness of MT over a waterfall or river.  I know this isn’t legal, but it is what I want.

Why isn’t that legal?  I might like to be scattered in the ocean because I do so love the beach.  I don’t want to be kept in a box in someone’s closet though…ick.  My mom knows and doesn’t like it, but I don’t care what she doesn’t like at this point in my life.  My husband knows also and has agreed.

I am glad your husband has agreed.  That must have brought you some peace. Love, Butterflies ~In the event of rapture, this account will be unmanned.

Response:

Hi, Shell, Keeping spoiler… / / / / / / / / / / gosh butterflies i also have a burial plot ready for me. its a sobering thought, but its a lot easier on the surviving family when decisions regarding death dont need to be made

I need to be more pro-active about setting things straight for my coming death. I mean, it’s going to happen sometime (unless I am raptured) so I should be prepared. It’s good that you have a burial plot ready;  I am just not sure what I want done with the body when I have left it.  I keep thinking about it;  I guess I should decide.  It really won’t matter to me when I’m gone, so I need to consider the family’s wishes.  They might be upset, for instance, if I donated my body to science to be cut up and all that.  I’ve made it clear that I at least want to be an organ donor, though.  Assuming that when I die I haven’t trashed everything. :-0 Love, Butterflies ~In the event of rapture, this account will be unmanned.

Response:

hiya becky, spoilered 3 3 3 3 3 3 3 3 3 3 3 3 no i dont have one prepared, but have thought about it often them cemetaries.  this is groddy.  you know how we have them floods?  well, the reason we have above the ground tombs is because in civil war times , they buried people underground here.  now, when it floods the old cemetaries have coffins wash up and float down the street. they have to open them and identify them by jewelry and dental work glad i dont have that job! shell

Response:

spoilered for my favorite topic, death…. . . . . . . . . . . . . ok, enough.   Shell – yep, those cemetaries are just awesome!  It’s one of the places I just HAD to go to last year when i was in town.  Really neat.  Sad, but neat. As for my body – oh I’m hoping my skeleton will get to hang in a biology classroom one day – either that, or it’s cremation for me. My family isn’t too thrilled, but they’ve promised to respect my wishes. Do most of you have wills, living wills, and DNRs prepared? Just curious. b

Response:

I had to do a future planning regarding the possible death from lupus.  I am an organ donor and have donated my body to science.  It is specified in my will. I called around to doctors researching cns lupus and asked if they wanted my body ….lololol!  Anyway, Nkki, just a thought.  Sarahrein Justice – When you get what you deserve Mercy – When you don’t get what you deserve Grace – When you get what you don’t deserve "Hunger hurts but starving works when it costs

Response:

an interesting fact on burials spoilered below 3 3 3 3 3 3 3 3 3 3 3 3 3 3 i know nikki and butterflies both mentioned cremation for fear of being buried in the ground. we do things weird down here in new orleans.  as i have mentioned before, we are below sea level.  which means we cant bury people below the ground.  our cemetaries are famous down here and quite nifty.  most are tombs, with elaborate tops.  they are described i woudl assume in teh anne rice novels.  but very gothic and original looking things.  i dont know, maybe kyra mouse could explain better.  but if you go the tombstone route, well, you are place d in an above groudn tomb.  but in our family, we have a family plot saved where my grandfather is buried in a bogalusa (little bitty louisiana town where my nana lives) masoleum, in a wall shell

Response:

you are profoundly sweet meg hugs shell

sour too Im recomposed now and Ive been thinking…. . . . . . . . . . . . . . . . . . cremation.  absolutely. meg Before you buy.

Response:

i have a living will, advanced directive-the whole shebang.  did that after my first rotation at the hospital.

Response:

I wonder if there are any resources/websites who deal with the subject of future health. Are there any *likely* things that can occur health-wise, even when you are not actively anorexic/bulimic anymore? I would like to be mentally prepared… Do you know of any resources? It’s hard to preserve naivety… Milenka

I don’t know, Milenka.  I would also like to know.  That’s a very good question.  Kal

Response:

Do most of you have wills, living wills, and DNRs prepared?

No, I don’t and I really should because I have 3 children, who’s precious lives I am responsible for.  The problem is that I have no one to leave them to that I can trust not to totally skrew them up.  Kal

Response:

Do most of you have wills, living wills, and DNRs prepared?

Yes, having gone through illness and death with my husband and later, my father, I realize the importance of these.  I’ve got my cemetary space, too, next to my husband, so that when the time comes it won’t be a hassle for whoever has to deal with my affairs. –Connie — "Starving the flesh wastes the spirit." –Kandis Elliot

Response:

I wonder how much our life spans will be cut by the ED.  Obviously, it varies with everyone’s situation.  It is scary to think about. tasha

Response:

I wonder if there are any resources/websites who deal with the subject of future health. Are there any *likely* things that can occur health-wise, even when you are not actively anorexic/bulimic anymore? I would like to be mentally prepared… Do you know of any resources? It’s hard to preserve naivety… Milenka * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

Response:

Agreed.  {{{{{Meg}}}}} Love, Butterflies ~In the event of rapture, this account will be unmanned. – Hide quoted text — Show quoted text – you are profoundly sweet meg hugs shell

Response:

B:  I have advanced directives, medical director, springing durable powers of attorney, living will, etc. etc.  Sarahrein Justice – When you get what you deserve Mercy – When you don’t get what you deserve Grace – When you get what you don’t deserve "Hunger hurts but starving works when it costs

Response:

{{{{{Meg}}}}} You are too sweet.  I really appreciate what you wrote–it meant a lot to me. Thank you. Love, Butterflies ~In the event of rapture, this account will be unmanned.

Response:

If you like this post and would like to receive updates from this blog, please subscribe our feed. Subscribe via RSS

Related Posts

Leave a Reply