[lenjan]

I need to hear from some folks with serious chronic illnesses. I have aplastic anemia. The more I read about it, the worse the news gets, and now I am totally obsessed with death.

Now, I'm doing pretty well at the moment, but I was just dx'd in early December. I'll get off my major med for it in July or August. My T is moving to Tennessee shortly, and I don't intend, for now, to replace him. But I am freaking out over what might happen once I go off the med. What if my platelet count suddenly drops by 100,000? I'll be back in the hospital, getting a bone marrow transplant.

Butbutbut, did you know that your chances of surviving more than 2 years with a bone marrow transplant that doesn't come from a sibling are very, very slim? And that if you're over 40 (I turn 41 in April), it's even worse? And that even if you go into remission, and survive nicely for another 10 years, the stupid disease can come back and kill you THEN?

Part of this is fueled by the fact that a lovely old man at church -- and granted, he was old -- had been ill for a bit, recovered, was doing fine, talked to a fellow usher Friday night and said he would be at the 4:30 Saturday Mass as usual -- and they found him dead Saturday morning. Yeah, he was 89, and I'm 40, but I freak out over stuff like that. I had a blood clot in my lung (thank you, hormonal birth control) when I was 27. I was having some bad pain, so the dr. wrote me orders for Demerol. I totally refused it. I think I stayed up for 3 days straight. My dad worked near the hospital and would come visit over lunch, and he'd keep trying to get me to get some sleep, and I kept saying, "I'm not going to sleep until I'm positive I'm waking up again." And that's kind of how this feels now.

I'm a nutjob, I know. I just need a little reassurance!

Thanks.

Candy

[SeptemberMorn]

{{{{{{{{{{{{{{{{Candy}}}}}}}}}}}}}}}}}}} I'm so sorry you're going through all this!

My obsession is having a heart attack or a stroke. Most of the time, I don't think about it, but when my anxiety level is up for whatever reason, anything can trigger it.

I know more than I care to about both and I know I'm a prime candidate for either. Both my mother and hers died of strokes. My dad died of a heart attack.

At first, I tried doing what my aunt said to do and that is meet your fear head on. I did... UNWILLINGLY! I nursed my mom through her strokes till her death. I read up as much as I could but it made the phobia/obsession worse!

All I can say is that you'll work through it, whether it's by continuing to read or by finally getting enough and giving up on the reading. I understand you're going through PURE HELL right now!

Do you suppose you could get your doc to up your anxiety meds? That's the only thing that helps me when I get a twinge either in my head or my chest and the obsession starts. Lately, I've been getting a pain behind my right eye and will often get double vision. I'm seriously thinking of getting my brain checked out. The eye doctor didn't find any reason for it. Mini-strokes???

[lenjan]

Tomi, if I can help it, I'm going to get my pdoc to up EVERYTHING. I want my Effexor dose back where it was before I got sick. I want my Risperdal dose back where it was. I want back on the Norpramin. I don't know WTF those people were thinking when they cold-turkeyed me off all my psych meds and then only let me have a couple back, but if I have anything to say about it, I'm getting them ALL back. And I will see about getting the Xanax upped.

If the eye dr. didn't find anything, I don't know what to tell you. But I'd definitely look into it more! -- if only for your peace of mind.

Love, Candy

[SeptemberMorn]

Candy, I don't know why they mess with our meds!! Maybe they don't realize it's as much life or death as your anemia!

You go, Girl! You get those meds upped back where they should be! In the meantime, you're in my prayers.

Post deleted by kimmydawn

[(JD)]

(((candy)))) I'm not going to speak to your meds at this point, but the other issue I heard you raise: thinking about death.

I've been there, a few times. Prior to my disabling injury.

If it weren't for my faith in after life, in a supreme being, I don't think I could have handled what I went through those times. If you have any inkling of this, or perhaps if you have NO inkling of such, then that might be a fulfilling search?

Of course, I had been ill and was really tired and "ready" for it to end. That it didn't end surprised everyone.

We have no clue what the future is. Worrying about it does nothing to help us now. I think double checking the whys of meds is a good thing, but not to the point of such franticism. I hope you find something to help with the anxiety. TC

[lenjan]

Sorry Sky, I guess you'll have to count me as a failed Christian. That's how I see myself, anyway. I believe in God -- the rest I'm not so sure about, which is why I freak out so much about death. It would be nice if I could calmly believe that I'm going somewhere much better after I die, but first of all, if there IS an afterlife, I'm convinced I'm going to hell, and second of all, I'm not at all sure it isn't just eternal blackness once you die -- just a big nothing.

Believe me, I have struggled with these issues for years, so it's not a search I'm just undertaking.

I am not a fan of surprises and the unknown, and death is the ultimate unknown. And it scares the crap out of me.



Candy

[(JD)]

Well, I for one, will not consider you a "failed Christine." Even those who have had strong faith in the past have had to come to grips with their own mortality and what they believe.

Scientifically, energy cannot be destroyed. Your energy will always exist. You won't have the horrible physical body to deal with though. Does this help at all?

[SeptemberMorn]

Ok... now can you give her some HOPE??? YEOW!! That is some SCARY information, especially when she's obsessing about dying!!

[heartspace]

You're not going to hell. If you are then the rest of us are because I just can't see any reason why you would. As for being a failed Christian I disagree. If you believe in God (which you do) and you're basically a good person (which you are) you'll be fine.
imho your obsession isn't stupid. I get freaked out when I think about death too. I'm dealing with it better than I used to (after I had my kids I got a lot better with that stuff). But what you're feeling isn't stupid at all. So you're worried? Yes. Nutjob? No no no.

[heartspace]

</font><blockquote><div id="quote"><font class="small">Quote:</font>
SeptemberMorn said:
Ok... now can you give her some HOPE??? YEOW!! That is some SCARY information, especially when she's obsessing about dying!!

</div></font></blockquote><font class="post">

Good point SeptemberMorn.

I've been PMing with Candy about this as I've been where she is in dealing with a chronic illness.

We have a similar blood disease and I was trying to help, not hurt.

We share a lot of the same fears, concerns and obsessions. I know exactly where she's coming from and I hope I've been helpful.

The info I gave her was not meant to scare her and I'm sorry if it came across that way.

But the very meds she was going to ask her Pdoc to increase could have serious side effects that could harm her and I just wanted her to be aware.

I wanted to make sure she checked it out with her Dr.'s. before they upped the doseage. I would feel awful if I didn't tell her and she ended up back in the hospital.

Kimmy was kind enough to delete my post as I didn't want to offend anyone.

I apologize.

Petunia

[lenjan]

Petunia, it's OK.

Other folks, we have been PMing, and it's OK, really.

{{{{{{{{{{Petunia}}}}}}}}}}}

[kimmydawn]

((((((((((((((((((((((candy)))))))))))))))))))))))))

(((((((((((((((((((Petunia))))))))))))))))))))))

(((((((((((((((((everyone here)))))))))))))))))))))

I know that when I was dx'ed I wanted to know EVERYTHING that I possibly could...shot at me straight.

I also know that others feel protective of our candy right now.

KD

[lenjan]

KD, you're right -- I want to know everything I can find out. The trouble is, what I'm finding out is distressing! It's making me wonder if my docs, any of them, know what they're doing.

I think I am flipping out over all this right now because of the impending loss of my T. That feels like a death to me. Gregory is going to take a very large part of me to Tennessee with him. I can't imagine not seeing him every week, not hearing his voice or his laugh or anything else, probably ever again. I start bawling every time I think about it. I have opened myself wide to him, wider than I have to anyone, ever, T or otherwise. And now that part of my life is dying, in a sense, and so I'm worried that I will too.

I dunno if that makes any sense. But please don't take it on Petunia. She was trying to help, and has helped me many times with good information. I'm just being extra-sensitive (which is a neat trick, as I'm really sensitive to begin with!).

Candy

[kimmydawn]

((((((((((((((((((candy)))))))))))))))))))))

i'm so very sorry about t. i SO know your feelings and thoughts right now...God only knows how much.

kd

[(JD)]

May I continue this thread? (((((Candy)))) my heart goes out to you while you face this.

We all are dying. Most of us don't know when, many of us don't want to know. I found a freedom to "knowing" when I thought I and the doctors knew...

it made me really see what "the small stuff" was... it helped me to not waste energy on things that really, in the big picture, meant nothing. It showed me who I wanted to spend time with, and who I didn't. Stuff like that.

Knowledge is good. But also good is not taking everything as "gospel" because there is always the element of a higher power's intervention, imo.

Becoming "friends" with death is probably not what you are up to, nor what you want to do right now. IMO, if you could, then you might be better strengthened to fight it out, and live.

[lenjan]

Thank you, Sky. I need to think about this some to really do justice to a reply. I believe a higher power's intervention is why I am still alive, actually -- none of the medical professionals thought I was going to make it. But I had half the planet praying for me, I think, and I believe that made a difference.

Let me go chew on this some more and I'll try to reply more in depth later.

Candy