New course or treatment
December 20, 2008 12:11pm
Hi all,
I had the big appointment with my Rheumy on Thursday. The plan was to start a new course of treatment now that the IVIG has …
JaneEgirl
3:40pm, February 9, 2009
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About Me
JaneEgirl
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About Me
I am an out lesbian (circa 1980)and practicing Buddhist. Practice and study has taught me the value of each day, hour and this very breath. Most of the time I live joyfully and compassionately. I love working on my home, being out of doors, being with my dogs, my friends and family. I have a son and he and his lovely wife gave me a grandson in 2007. I am single... since February 08'. For now I'm happy keeping myself for myself. I have systemic lupus.
I am an out lesbian (circa 1980)and practicing Buddhist. Practice and study has taught me the value of each day, hour and this very breath. Most of the time I live joyfully and compassionately. I love working on my home, being out of doors, being with my dogs, my friends and family. I have a son and he and his lovely wife gave me a grandson in 2007. I am single... since February 08'. For now I'm happy keeping myself for myself. I have systemic lupus.
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Interests
I have been showing Pembroke Welsh corgis since I was a teen. I have been breeding corgis for 20 years. (I have a new litter on the ground now! Check out my photos.) I make jewelry and am looking ahead to classes in the art of fused glass and sterling. I am an avid reader and amateur birder. I love the outdoors. The wooded paths and open fields of New England are my cathedral.
I have been showing Pembroke Welsh corgis since I was a teen. I have been breeding corgis for 20 years.
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Recent Activity
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Journal
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Morning has broken
December 12, 2008 11:11am
First of all thanks to everyone for being so supportive as I go through this hard time. My Rheumy called yesterday to encourage me to make an …
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Good things keep happening
December 10, 2008 5:24pm
It's has always been true in my life that no matter how bad things are good things keep happening. The bad never cancels out the good.
My …
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More on the failure of IVIG
December 10, 2008 12:58pm
My rheumy left a message on my VM this morning that we will be stopping the IVIG. Not working. He does want to have me come in to …
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Bad blood, rising CPK and IVIG
December 9, 2008 8:31pm
I am not looking forward to sharing this news. The test results are in and nothing looks good. My cpk is up again for the forth time... …
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Hugbook
Moment of Peace
I know it's been a while, but I just wanted to say hello and hope that you are doing well.
Hug
Hi Jane, I have been thinking of you & praying that you are OK.......Hope we all hear from you soon & you are doing well.....Love & Hugs, Deb
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Prayer
Hi Jane, I was thinking about you & praying that you are doing well. I have not seen you on here for awhile so i am checking in on a friend......Big Hugs, Deb
Hug
I miss our talks. I hope for you health and joy.
Hug
hi jane...been thinking of you and hoping and praying you are doing okay...miss you...love and hugs helyn
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Photos
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Support Groups
Close Lupus
Diagnosed 1993 after having symptoms beginning at age 10. Staying on the planet for the joy and for a cure. At this time the biggest problem is Lupus Myocitis. My muscles are melting away. They are being eaten away by inflammation. My Rheumy is trying everything. Hope CellCept works. Having trouble getting around. Scary.
Treatments
- Acupuncture Not Working
- Very bad idea for someone with Lupus Myocitis.
- Azathioprine Not Working
- Worked for 10+ years but recently stopped working.
- Cellcept Working / Worked
- Just started
- IVIG Not Working
- Failed after 6 month trial.
- Meditation Working / Worked
- Really helps stay in the moment. Saving grace when I do it.
- Methotrexate Not Working
- liver failed
- Plaquenil Working / Worked
- Prednisone Working / Worked
- The old stand by. Has literally saved my life several times.
- Psychotherapy Working / Worked
- A great help. Have had the same therapist for 9 years. What a wonderful experience. Changed my life.
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Groups
