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Yes, I'm still alive.

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Old 09-19-2003, 05:10 PM   #1
Senior Member
Join Date: Jul 2003
Location: Temecula, CA USA
Posts: 123
kael HB User
Unhappy Yes, I'm still alive.

Hi. I just checked in here for the first time in a long time. Thank you for thinking of me. I am still struggling. Some of my symptoms have improved, some are still challenging. I am eating better. My twitches are almost non-existent, but my central nervous system is still not right. I have tremors in different parts of my body and some weakness when it acts up the worst.
My biggest challenge right now is sleeping. I had gotten much better, to 7-8 hours (though broken) but this week, all of a sudden 3-5 hours. When I don't sleep I don't deal well with everything else going on in my body.

I'm still scared, not knowing what has happened to me. I am angry, wondering why I have to go through this because I do not deserve this nightmare and neither do my precious children. And, at the best of times, I am grateful for what this experience has done to my soul - for the strength I have accessed and for the level of compassion it has brought me to.

I am working with two alternative healers who work on the energy systems of the body - one with the central nervous system, tissues, spinal fluid and bones, the other with the electromagnetic energy field of the whole person.

I am hopeful when I look at how much better I am than I was two months ago, and get scared when I want it to be gone and want to feel normal again. You just don't hear about this type of thing happening to people, so I feel very alone sometimes. It has terrorized me to a point.

Roni, you are a sweetie for thinking of me still. And Barb, you too! I have not forgotten any of you, I just got to a point where I felt that I needed to do everything in my power to distract myself from giving any outside attention to my illness. I just wanted to drain the power from it, if that makes any sense.

Robb and I have not separated, and he has committed to keeping us in our current house through the end of the school year. In the meantime, that is tough on me because I don't fully want to be in the relationship any longer. But for right now, I can only just handle so much. My health and my kids are the most important. I will give it my best shot.

Love to you all!


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Old 09-19-2003, 08:58 PM   #2
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Join Date: Mar 2003
Location: ottawa, ontario, canada
Posts: 2,205
jinglebts HB Userjinglebts HB User

in a word -- i sympathise ... and yes, 'drain the power from it' DOES make sense, because these illnesses have a TERRIBLE hold over us and they should not!

no one wishes these things on themselves, and guess how many people they happen to? just about everyone, in one form or another ... i had a 'stroke' in 1996, except it wasn't an aneurism and wasn't a clot, so let's just say i had an 'episode', which left me with right-side weakness ... since then my mum has died and w/in 6 months i'd developed hypo, which went undiagnosed for a year because guess what? i'd had seizures ...

when i said i had cfs, in 1987, everyone came out of the woodwork about it ... when my friend died of breast cancer, and another co-worker too, many people came out of the woodwork about surviving bc too ...

the mum of my daughter's best friend gets hernias at the drop of a hat and is going for her n'th surgery now, her daughter's wedding being over; i met a man with whom i'd long been acquainted at that wedding, and he told me how he nearly died, spent 6 months in rehab, and wouldn't have survived if he hadn't already been in the hospital ... the groom's dad had just had hip replacement surgery ... my husband has IBS that he can barely control ... my son-in-law had successful (thankfully) back surgery for sciatica but he suffered for months and guess what -- he's an actor, supposed to be in really good shape and you never know when the next role is going to be one asks for these things, not a single one of us ...

it's called 'life' ...

so go ahead and feel sorry for yourself and i will COMPLETELY sympathise, and then somehow get your life back ... you're strong and you deserve it ...

and by the way, i was thinking of you too, just couldn't recall how your name was spelt ... jb

[This message has been edited by jinglebts (edited 09-20-2003).]
keep the faith ...

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Old 09-19-2003, 09:30 PM   #3
Join Date: Jul 2003
Location: south Texas
Posts: 1,153
roni624 HB User
Post is so good to hear from you. I was worried about you. I have kept you in my prayers and hoped you would start feeling better. I know you have other personal issues beside your health that you are dealing with. Just concentrate on getting better and being there as much as you CAN for you children. I really feel for you. I wish you did not have to go through this. It brings tears to my eyes because I think of me having to go through the same thing. Although I am not, I try to understand what others are feeling. It just breaks my heart to see you are going through this. Nobody deserves this. I posted for you a while back. All it said was that I had spoke w/my SIL and her SO is a dr and told me that you should consider seeing an infectious disease dr if all else fails. I wish I could make all of this go away for you but I just don't have that power. I know the good Lord above is your best answer. He has been there for me in more ways than one. I am doing better for now. I still am afraid of crashing though. I took all soy possible out of my diet and that seemed to help for now. I want you to know that I am here for you mentally if you need someone to vent. Don't be afraid of sounding like a whiner...I did it too. I have a busy weekend with all our hunts down here but I will try to post at night. Take care and God bless you.-

Old 09-20-2003, 05:54 AM   #4
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Join Date: Aug 2003
Location: USA
Posts: 3,441
LuvMyLilDoggie HB UserLuvMyLilDoggie HB UserLuvMyLilDoggie HB UserLuvMyLilDoggie HB User

Kael, so sooo good to hear from you! I can relate to some of the personal things you're going through. You know I went through a lot late last year and early this year. I left my husband for a while. Now that I look back, I think it was when my thyroid kicked into OT. I was sooo freaking nuts! Crying all the time, throwing things, hitting the walls, chasing after my husband down the street screaming at him. All the while thinking I was going to have a heart attack from the pounding in my chest or he was going to commit me to the psych ward. Now that I know the symptoms, I think I went hyper for a time before I was dx'd as hypo.
Just keep concentrating on getting yourself better. From there, everything else will fall into place. It's hard to think straight when you're so ill. I think it's good that you've decided not to make a decision as far as you and your husband go just yet. I almost made that decision when I was in the crazy stage. For me, it would have been the biggest mistake I ever made. You and your husband may or may not be together in the future. But at least you'll know you made that decision with a clear head and that it was the right decision for you. (((((hugs)))))

"Troubles are often the tools by which God fashions us for better things".
Live, Love, Laugh.

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