Searcher, I can only say, keep communicating about this. You honor Nichole in helping others who suffer as she did.

Searcher...You did an amazing thing for a troubled soul...now that I am thinking about it...I'll bet you Nichole led her straight to you...the way I see this ...there is ANOTHER chapter for that book you need to write...

I had no idea how rare this disease that changed your family's life is...Life is so fragile isn't it? Is the USA the only nation researching cures for it at this time do you know?

Searcher, all I can say is WOW. I was so clueless about the numerous ways Nicole suffered, and you right along with her. How did you do it? And how are you doing it now?

I don't mean to sound dramatic. I have lived through a few low blood sugar reactions with my husband that really threw me for a loop. I know the sharp memories that remain for the following weeks. The "what ifs?" and how hard it was to relax and not be a basket case thinking they can occur any night. How did you relax?

Are you relaxing yet?

And God bless you for reaching out to others in need. It's got to stir the memories yet you do it anyway. You are indeed a blessing.

Well My Friends,

Thanks for reading about this.....I know it really concerns no one here at the present time and hopefully never....But I think that awareness is always a good thing -- and in some ways, you all have known my Nik, so are concerned after all....

So far, I've only been able to communicate with this one young woman, so no accoulades are deserved!! But this was the defining factor in our lives and surely is theirs....I can't just leave it be. It's just too devastating for anyone out there who might need some support. We didn't get nearly enough (barely any really), and it's too awful to think that someone else might be going thru this alone...or with limited help. Today alone, I received 6 emails from people who are in renal crisis, 3 yesterday, and more from days before...Several emails from those who have the flu (serious business for these people)and one from a Mom whose child needed surgery and the attending "forgot" the child needed extra cortisone before....the child was failing fast when the mother realized she had not asked the doctor if he had given the extra dose. The dose was given, the child survived. Had the mother not remembered, she would have been dead by morning. I'd be changing doctors today!!!!

Avalon, I'm sure you're right that Nichole had something to do with this - at least I hope so.

Dotsie, no one can be too dramatic about this..this is as dramatic as it gets....I always said "Usually, people this ill either get better, or leave this world.." with this serious health issue, many still live on to late years in life - IF they can stay on top of all these issues.....It's possible because we do have cortsone in pill form now and the other hormones as well, it's just the very biggest Managing problem, and from day to day, you just never know..

I truly can't say how we managed. I inherently have "bulldog tenacity" and just won't give up when in other areas, I probably should have. In this case, a good thing.....And anyway, what's the alternative????? But the real thing was that, I loved her. Simple as that. We daily went through some crisis or another, and after siezures began, many times daily. I do think that we always had "SOMEONE" giving us the strength we needed for that day, even when we didn't feel we had any at all....

But also, education is key. Nichole and these others had a health issue so fragile, that it's not possible to live long without learning a great deal about all this...As you well know, Dotsie.

To answer your question, Dotsie, I don't think I really remember what relaxing is. When I am still, I end up thinking about things - replaying scenes of our lives...but at least I am no longer hearing phantom siezures..I used to jump up with my heart beating like crazy and begin to run, only to realize it was just the cat or something....I say I'll never die of a heart attack because it's been tested to beyond it's limits a thousand times a thousand!!!

I'l tell you this and then be quiet. Winston, our 16 year old dog, (if some of you will recall) was getting really bad at the last. Sam and I were here, wondering what we should do, when Winston began having a siezure. Sam grabbed him and held on tight. After, we looked at each other and called the vet. We took him in and put him down right then. That's one thing I don't think either of us will ever be able to survive again.

Thanks for listening

Searcher

You summed up how you survived and how you managed with 3 simple words..."I loved her"...
that's what life is, always has been and always will be about - LOVE. That "someone" that's been helping you is God, because God IS love. He loves you even more than you loved Nik, if you can only imagine. Not only does He love you, He loves THROUGH you. That's why He trusted you with His Nichole.

((HUGS))