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Barbara Lee

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Posted 5/23/2008 3:46 AM (GMT 0)
Barb: Been thinking about you..  I hope you found the right docs. for yourself wishing you well. God bless. Debbie   
Posted 5/23/2008 6:07 AM (GMT 0)
barb--hang in sweet thing this old world has to get those right doc's very,very sooon
god bless you and sleep well[rest]
Posted 5/23/2008 4:13 PM (GMT 0)
Hi Debbie and Peachypeach:

I've not yet found a doctor to give me a second opinion. My current PCM is managing most of my care as I hate my rheumy. Of course I've got a whole slew of specialists. My oncologist I like a lot and don't want to change him, I like my cardiologist and pulmonary doc and of course my internal medicine doctor is great. It's just my rheumy I don't care for.

Treating me is very difficult as the blood cancer and lupus are feeding on each other. The meds I take to treat my lupus and RA are bad for the blood cancer. The blood cancer is advancing and will continue to do so until it's full blown leukemia.

I'm currently having a huge flare, I've got sores in my mouth and throat, severe joint pain, shortness of breath, chills with sweating, fatigue, my husband said this morning my eyes looked like a raccoons eyes. I saw my pulmonary doctor yesterday and I need a right sided heart catherization, I'm not sure when it will be done, one doctor is talking to another doctor, so you know how that goes. Hopefully, it won't be the week before I'm due to go to Atlanta to meet up with my fellow lupuies.

Anyway, thanks for offering up your well wishes. I'm sure I'll find someone soon for my second opinion. Hope you both are feeling well or at least better. Have a great Memorial Day weekend.

Best Wishes,
Barbara
Posted 5/23/2008 8:35 PM (GMT 0)
Barb, thanks for the update. I am sorry that you are having such a bad flare and that you need to have a heart cath. I really hope you can eventually find a great new rheumy to work with you on your lupus and fibro. Doctor hunting can be exhausting though, especially when you have so many other doctor appointments already. Would one of the docs you really like be able to give the names of any good rheumies? I hope you get to go to Atlanta - I think it would be so much fun and so uplifting to meet up with some of the wonderful healingwell lupies. I remember going to the lupus walk last fall and even though I didn't know the other people there, it just felt great to be in the company of other lupies and to know I was surrounded my others who were a lot like me. Please keep us updated whenever you are feeling up to it. I keep praying that you will be able to get some relief from your symptoms. Lots of love, hippi
Posted 5/24/2008 10:12 PM (GMT 0)
I went looking for you Barb to see how you are doing, sorry to find you not in great shape.
I hope things improve soon, hope you get to meet the luppies.
You deserve a break and are an inspiration to all, me anyway!
xx and hugs,
ann
Posted 5/25/2008 12:34 AM (GMT 0)
((((((((((((( Barbara ))))))))))))))) Hugs and blessings!
Posted 5/25/2008 1:26 AM (GMT 0)
Love and best wishes and prayers. (((((hugs)))))
Posted 5/25/2008 3:33 AM (GMT 0)
Barbara,

I love you, am thinking of you and praying for you. Hang in there sweetie. There are tons of people who feel the same way that I do about you. You are one of a kind and an inspiration to all that meet you and know you. God has blessed me with a good friend.

Love,

Linda
Posted 5/27/2008 9:00 PM (GMT 0)
Hi Hippi, Rosie, Marji, Ann, and Linda:

Thanks for the well wishes all. I appreciate your support, I have to admit I'm feeling really low these days and I'm not feeling physically well either. I'm frustrated as I can't seem to get this heart cath scheduled and I'm still flaring up a storm. Hippi my doctor is unwilling to help me find a new rheumy I've got to do all the leg work myself, she plans on speaking to whomever I choose but nothing until I make up my mind as to whom I want to see.

Still coping with lots of things and honestly I'm very close to giving up, most days as of late I wonder why do I bother to even try to stay strong. Anyway, I appreciate your thoughts, prayers and well wishes. I don't know what I'd do w/o you all.

Love,
Barb
Posted 5/27/2008 9:58 PM (GMT 0)
Barb: Hang in there, you will find a rhumy to treat you. I'm sorry you are still in a flare, it's got to be all the stress you are dealing with. Barb don't give up we are all praying for you.(((((hugs)))))) Debbie
Posted 5/28/2008 1:15 AM (GMT 0)
Barb,
I know you must be exhausted. I can't believe your doc won't get you a better rheumie. If there is anything I can do to help, my email is in my profile for a while. I'm praying for you. How about your oncologist--can he help you find a good rheumie? I think you said he was good. Maybe the nurse there would help. Love you Barb and hope you get a break soon.
Posted 5/28/2008 3:11 PM (GMT 0)
(((Barb))) I pray for the day when you'll write to tell us that you're having a good day. I imagine that just one good day would be a godsend. Take care of yourself dear friend and we'll do what we can to keep your spirits up. Even though it's difficult and stressful for you, I'm happy to hear that you're continuing to search for a new rheumy.

Love,

Pat
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