Mom Passed Away at 68
March 3, 2008 12:09pm
February 10th I got a call from Mom's home health aid that she was having trouble breathing and was taken to the E.R. I threw an overnight …
MoonBlossom
11:32am, January 15, 2009
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About Me
MoonBlossom
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About Me
Diagnosed with PCT in 2005. Dx changed to Variegate Porphyria in 2007 while hospitalized for an infection. Struggling to cope with the lifestyle changes and isolation.
Diagnosed with PCT in 2005. Dx changed to Variegate Porphyria in 2007 while hospitalized for an infection. Struggling to cope with the lifestyle changes and isolation.
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Interests
Many of my former interests are no longer possible. 2009 will be the year to redefine myself!
Many of my former interests are no longer possible. 2009 will be the year to redefine myself!
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Recent Activity
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Journal
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Journal Entry for December 13, 2007
December 13, 2007 1:35pm
The stress of my failing relationship is about to put me over the top. I don't know how much more I can endure. I've tried …
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Hugbook
Hug
I apologize for not writing you sooner- I can no longer use a regular P.C. at a desk, so whenever I can get my hands on a laptop, I try to catch up. How are you doing with your loss? My prayers are with you and I speak blessing over your life. God bless you- E
Flower
Flowers for a friend, hope all is well with you. Do you know what happened to DoubleL ? She disaperaed and nobody has been able to get in touch with her even thru e-mail
I’m With You
I put a comment on your journal entry, read it when you get a chance. you are loved....xoxo
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Hug
thanks hon, it's thinning, but it still looks okay. I'm so vain, man, don't mess with the hair, ya know....it's kinda ridiculous in the big picture of things, but.....LOL xo
Hug
Welcome to the best site around. Good to have you here among us. May God Bless you and yours.
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Photos
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Support Groups
Close Porphyria
Type: Variegate Porphyria (VP)Originally diagnosed with PCT in 2005. Doctors didn't know much about it. After extensive research on this disease it became clear to me that PCT was incorrect as I had many symptoms of acute porph. The doctors refused to listen and began a series of phlebotomy treatments. This treatment left me feeling weak and more symptoms presented than ever. After 6 months, they finally agreed to stop. Next came Chloroquine which made me very ill - dc'd after only 1 week. Finally got my dx of VP 8/07.
Treatments
- Chloroquine Not Working
- Made my neuro symptoms act up. Skin lesions increased dramatically.
- Phlebotomy Not Working
- Made me very weak. Sick all the time.
- Meditation Working / Worked
- Stress is a huge trigger in VP. Meditation is really helping me reduce stress by being more in the present. No side effects and its free!
- Talking Somewhat Helpful
Close Hepatitis C
Chronic HCV. Not a candidate for treatment because I also have acute Porphyria.
Treatments
- Talking Somewhat Helpful
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Friends
