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About Me
blithe1
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About Me
I have a family history of autoimmune disorders and I ended up with quite a few -My Dr says -the amazing thing is not that I have so many - but why I don't have them all lol . But, I have a wonderful supportive husband who has always had a strong shoulder to lean on along the way. We are in our 50's and recently made a treechange . Fresh mountain air and a big open sky does us wonders.
I have a family history of autoimmune disorders and I ended up with quite a few -My Dr says -the amazing thing is not that I have so many - but why I don't have them all lol . But, I have a wonderful supportive husband who has always had a strong shoulder to lean on along the way. We are in our 50's and recently made a treechange . Fresh mountain air and a big open sky does us wonders.
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Hugbook
Ray of Sunshine
It has been raining here for 4 days.....i don't know how your weather has been, but i am sending you some sunshine......have a good day.....Hugs, Deb
Flower
Thanks for the kind thoughts...tests were good, no MS and if it is/was Neuro-Lupus no lesions...got a perfect score on cognition but am having a flare....Probably all the stress from the tests! Interestingly, no major killer migraines since the hemiplegic in October...they did find a venous angioma, some say this causes headaches...but not enough research to be sure...Oh well, fingers crossed! Hope all is well with you...love, light and peace.
Hug
how are you feeling? I just did my last treatment and feeling really yukkie. BUT, it's almost over !!!
Flower
thanks for your moments of peaace! Man have I needed it. My daugter is on the mend but it was so stressful. I have a routine and that just threw me. My lupus took a back seat to look after her and man am i paying for it now!!!!!! Getting back to normal now as she is on the mend!!! Can not believe it is march already!!! Life goes so quick..all i feel i am doing is working then spending weekends recovering from working!!!!!!!!!!! Hope to do something enjoyable this week end after a long few weeks of chaos! How r you doing?????? I have been thinking of you. I hope ur not too tired after having visitors for 2 weeks.. I find that hard yakka!!!! Had my parents for 3 days that was more than enough!!
Rainbow
Hey! Thanks for the hug a while back. I needed it! Have a happy weekend!
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Support Groups
Close Non-hodgkin's Lymphoma
Hi -I was diagnosed with SLE & Sjogrens in 1993. After 5 yrs on Prednisone, I weaned myself off and started plaquenil an antimalarial. In 2000 I knew something was wrong, though didnt have the right doctor and just tended to go along with her non concern. A heavy flu brought me into contact with a Doctor who recognised how ill I was. I decided to go straight to the ER . I arrived at 7pm that night and stayed for 3 mths . And here I am happy to be here 8 yrs later.
Close Lupus
I was diagnosed in 1993 with SLE, but suspect I may have had it for longer. At the time of diagnosis I was literally bedridden - but within hours of my first dose of prednisone, I was mobile again.I was eventually able to switch to Plaquenil. My lungs were really involved in the beginning - but settled with meds. I have other disorders associated with Lupus Sjogrens and APLS. The first literature I read about Lupus was quite frightening - but 15 years later I'm here to say -hang in there
Treatments
- Cyclophosphamide Working / Worked
- This was one on my chemo (NHL)drugs and 'magically' made all Lupus symptoms disappear for nearly a year
- Plaquenil Working / Worked
- Plaquenil has been successful in helping to control my Lupus and is the medication I have used virtually continually since 1998 0 I had a 12 month break when I had Chemo
- Prednisone Working / Worked
- I used varying doses of Prednisone for 5 years after my initial diagnosis - while it seemed like a magic bullet it gave me all sorts of issues like weight gain and high blood pressure. it took about 5 years before I could wean myself off without major joint pain. A high dose was also part of my chemo protocol(CNOP) in the treatment of Non Hodgkins Lymphoma in 2000/01
Open Antiphospholipid Syndrome
I was diagnosed with LUPUS in 1993, and with NHL in 2000. The Chemo protocol put lupus into remission for 11 months. In Nov 2001 I has a mild stroke and it was discovered that Lupus had returned and bought it's friend APLS . I have been on Marevan ever since. It is only during those short periods when I am off warfarin to prepare for a surgery, that I realise how different it makes me feel. I am positively light hearted when I have heparin injections
Open Cirrhosis
I have a variety of auto immune disorders. Initially diagnosed with SLE in 1993.In 2000 while hospitalised for investigative work to determine the cause of my (then) illness (NHL), I was also found to have Primary Biliary Cirrhosis. As a 12 year old I had hepatitus A - but was never aware of any problems with my liver -even with all the regular bloodtests I'd had since developing Lupus. Since 2000 I have been taking Ursodeoxycholic Acid, which seems to keep the PBC manageable.
Open Environmental Allergies
I am a 57yr old woman who was a typical allergic child , my upturned nose is a legacy of my childhood "allergic salute" I went to Dr of Environmental medicine when I was first diagnosed with Lupus in 1993. A chemical sensitivity test revealed I have some definite allergies and many sensitivities.
Treatments
- Elocon Working / Worked
- I have had dermatitis from time to time since I was 12, Elocon is the last of a long line of creams -it doesnt make it disappear for good -but it keeps it at bay for a week or two
- Rhinocort AQ Somewhat Helpful
- Used to have a constant sinus problem, used this spray a few times- lol got cancer and sinus problem disappeared
- Sudafed Not Working
- Had a sinus condition -only used it a few times -didnt agree with me-gave me a headache
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