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  1. #1
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    I know I have been 'vacant' and not active on the board. I've been trying to catch up with the life I missed while recovering from heart surgery. Also, I am starting a NPF patient advocacy service. Its kicking off and obviously its all volunteer. (2 full time jobs are doing wonders for keeping my mind off of my own problems)

    While the advocacy service is not specifically for Lupus - most of my existing patients currently have been diagnosed at some point or other in time with lupus. I also deal a lot with the aging population and persons unfamiliar with the medical system and have no idea what or where to go.
    Some of my patients just need reminders to take their medication

    Some of you expressed interest in becoming patient advocates. If you're still interested let me know.

    Lupus is obviously my inspiration as is many of you
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

  2. #2
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    Hi Anna!

    How did the surgery go? What did the doctor say? How are you feeling? I am glad to see you are feeling well enough to be back on here again. You were missed.

    That's wonderful news on the patient advocy group. You are a strong woman to be working so hard when you are so obviously busy healing right now.

    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



  3. #3
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Anna;
    I think that what you are doing is wonderful and I am happy to hear that it is keeping you busy.
    How are you feeling after your heart surgery? It is good to see you on WHL again..welcome back!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  4. #4
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    Thanks for your replies! I'm feeling tons better.

    I attached pictures of my hero of a cardiologist (the only one that seemed to have a brain) and the subclavian thrombosis he caught. The picture of Dr. Addo has is taken with me prior to my diagnostic angiogram.

    After being inactive for 7 plus months due to inability to work my heart without feeling like I'm going to pass out I gained weight during that time I'm trying to lose now. I don't take steriods anymore (they put me in the epileptic unit the last time and through my heartrate through the roof)

    Other than that... still same joint problems but I think with Plaquenil and pain medication we have that mostly under control. the fact that fall finally came and the horrible summer is gone should only mean a few months of a break!
    Attached Images Attached Images
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

  5. #5
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    surgery went without a hitch mostly. Dr Addo found the blockage on a friday. admitted me and I had bypass by the next friday. I was in icu for 48 hours, the hospital for anoteher 7 days. I started having stressed induced siezures (PNES) not long after though I did have a sizure that was induced because the hospital made a mistake in my medication (gave me a bunch of narcotics then didn't do a withdrawal plan afterwords)

    I had a problem with the narcotics after that but spent a week at my mothers detoxing and pretty much over that now...
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

  6. #6
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    hi anna, so glad to hear that you are back on your feet after heart surgery. I had nothing as serious as your heart issues, but i did suffer with atrial fibrilation. Between the rapid/sporadic heart rate and the meds that they put me on, i became totally sedentary, and mostly stayed in bed. Even getting out of bed made it difficult for me to breath. I know the fear and frustration, and i am so glad that they found your cause and that they were able to fix it....yes, i agree, thank goodness for Dr. Addo........i am very interested in the patient advocacy service. I will send you a pm.hope today is a good one for you.
    Phyllis

    share a smile today

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