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Started Jun 8
Mariann's Page
Profile Information
- Country:
- usa
- USA? What state?
- texas
- City:
- Canyon, Texas
- Sex:
- female, 50 years old
- Name of Illness and Year
- 1992
- Your role? (Caregiver, Survivor,...)
- survivor
- Relationship Status:
- Married
- How do you spend your time?
- A good deal my time is spent in my own caretaking of my residuals left from herpes simplex encephalitis. I have a severe seizure disorder, so fixing my own medication box, keeping track of what I have and will be running out of, and arranging doctor appointments helps my caretaker.
For the fun in my life, I enjoy my pets and wild animals, my family, and three grandsons. I also enjoy photography.
- What Are Your Dreams For the Future?
- Someday I hope to be able to be seen and understood as everyone else is. I don't expect to go backwards to be the person I was, but hope to be able to overcome the miscommunications that encephalitis has left me with. I hope to be able to travel to Europe and have enough energy to enjoy it.
- Do you have a website?
- http://eglobal.ning.com/main/index/join?target=http%3A2%2F%2Fegloba...
- Are you on facebook?
- http://eglobal.ning.com/main/index/join?target=http%3A%2F%2Feglobal...
- Favorite Music:
- Pachabell's Cannon in D.
- Favorite Musical Artists: (Notice... it's plural now!)
- The Pogues.
- Favorite TV Shows:
- South Park
Daily news/The Colbert Report
- Favorite Movies, Actors and Actresses:
- Music from Another Room
Children of Men
Premonition
Mariann's Photos
Mariann's Blog
WHEN YOU DO YOUR BEST, ACCEPT HELP
hi-
I got my pain shots today, and am off the codeine meds, and cannot walk. my legs are ok, but my spine has succumbed to dystonia. this is not the e, but since I have this, i'm sure i made an easy target for e.
I have a pain patch which works well, but not well enough to walk. just well enough to sleep. My pain doc said I have to get up and walk for the rest of my body, heart, lungs, etc. I am on oral morphine now in addition to my pain patch. I will be on the pain patch the r
… ContinuePosted on September 27, 2007 at 6:31pm — 12 Comments
Anxiety
[ Draft ]
Stephen-
That is really good idea that it shows up who is on line.
Once again, I wanted to bring up a deep fear. I am not looking for responses on how to get over it, just an idea if you experience this too. I mean, of course you can add any responses you wish, but what I was wondering is how many people experience this as I do.
I have anxiety and fear when I am alone. I have a great caretaker, but there really isn't anyone out where we live now, and I ha
… ContinuePosted on August 5, 2007 at 6:16pm — 19 Comments
HI- I guess I should tell you a bit of my story of E
I had finished my degree in dec.1990. I had been very sick with pneumonia that wouldn't go away for about a year before. Into the hospital I went with pneumonia, and some tests were done showing that I had pneumonia of herpes simplex origin. Then tests on my brain showed there was herpes simplex encephalits there too. I soon went into a coma and had a stroke while being out in the coma. My retinas received minimal damage.
Coming back home I had to relearn everything like most of you di
… ContinuePosted on July 17, 2007 at 10:23pm — 7 Comments
How do others see us now? Does this influence us? I'm just throwing out some honest questions here. …
How do others see us now? Does this influence us?
I'm just throwing out some honest questions here. I look at photos of myself pre-E. My eyes don't sparkle like they used to, I have more of a straight gaze, even when I'm happy about something, I don't laugh or smile the same.
It isn't that I have become stone cold, but a bit like that. My personality is a bit flatter, but I am also being medicated for bipolar and depression, and some of that is going to go with the meds. It's be
… ContinuePosted on June 20, 2007 at 9:53pm — 5 Comments
The Adaptation Element
Movies are picking up the idea that in modern society we have to be more than our cell phones, our blackberries, and the blue tooth in our ear. (That sentence right there would make no sense to someone 50 years ago.)
Movies such as Gattica and The Children of Men have the theme, among others, that you can have the perfectly built clone, but without the human element to adapt to survive, we won't. The movie Gattica has two 'brothers' swimming against a currrent. The robot or clone or wh
… ContinuePosted on June 7, 2007 at 6:27pm — 2 Comments
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I hate that you have to worry about skin infections...Stephen had one since having 'e' but he really had to take care of it. I think everyone that is thinking of getting one has already had one or has talked to the doctors..but I am glad you brought that up.,.I will be sure to mention it as well.
How are you doing?
Ellen
also- my son is back from Iraq- yeah!!!!
love, Mariann
i had an MRI done on my lower back and legs to see what was going on there. turns out I have bulging discs and that is what is causing the pain and not being able to move right. I am on a med in a lower dose than for parkinson's disease and it is really helping. my doc does not want to do an;y surgery on a post e patient. smart guy. next week I get more shots and hopefully they will help for a while. I can sit and watch TV just fine. I can't do much else though, for now.
Love, Mariann
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