yes I wonder that too mary ann. lolI am back to fevers fatigue and pain. Getting discouraged with no help from drs. Hugs to all marilyn

Hi mary ann and marilyn, i have had quite a good day. My tummy has been tame for the first time in days....went out and enjoyed dinner with my mum and brother in law. I've not done much, but at least i am feeling quite well for a change.
Marilyn, sorry to hear your in pain. Wish i could help somehow. i hope things get better for you.
Healing hugs
Jacqueline xx

Hi everyone, I had a 6 day hospital stay from the 23rd to the 28th of last month. I got a lung infection and went into a Lupus flare. I'm still new to all of this, but that was the worst pain I've ever been in...any slight movement...even someone bumping the bed made me cry and so very nauseated...I really don't ever want to experience that again as long as I live.

The tech came to "help me to the bathroom" and just stood there while I drained every ounce of life in me just to get up and go there. I ended up vomiting from the pain and she didn't do anything to help me to the bathroom. I held on to my IV pole for dear life. The nurse was really upset with her.

I am doing better, they shot me up with a bunch of steroids and antibiotics and I am home and doing fine. The lung infection is going away slowly. Everyone else in my family just got a bad cold/sinus virus....not me...I end up in the hospital.

Thanks for listening, for being there and understanding!! :)
Dawn

HI!
Finally got around to reading the new posts today. Lots of info there!
Been doing PT again for my back and getting a little relief. Sure not getting any sympathy from the therapist! I complained that one of the exercises was hurting my neck and I get, "Well, if you want to get better keep doing it, if you dont then stop". So, I woke up feeling sorry for myself on Tuesday. I try not to complain and generally am in a good mood, but, my hair is again falling out, I have gained more weight, the medical bills are coming in, ( yeah, the hospital tried to turn me over to a collection agency on a bill I paid. Think I finally have that straight), and I woke up with my left shoulder hurting, my rt index finger, my right elbow, my neck, my left hip, my back, and my right knee!
Everybody I work with is griping and I am feeling the tension. My son, his wife and my grandson moved out of state.
Well, I got no sympathy but a friend came over unexpectantly and dug up some irises and divided them for me. ("I figured you might need help with that and I love to garden.) Blessed friends!
So, I still hurt, my hair is still falling out, but I feel so much better emotionally. This woman became my friend when I went to church one day to drop something off and found her cleaning and crying. She was upset over a miscarriage she had 20 years ago that made her sterile. I didnt even know her but we talked for a couple of hours and became friends.
But I am afraid I am going into a flare. I hope it just calms down. Sometimes it does, but if it doesnt, then I will have to increase the meds again and I really dont want to. My organs are OK at present and I want to keep it that way. ( Although I think my lungs are affected to some degree and maybe my heart).
So, I dont see the rheumy until Dec. Guess I will wait a few weeks and see what happens. In the meanwhile, I hope I dont go bald, although my spouse is getting a little excited that he might get to try out a bald woman! Ha! I am getting a wig!
Mary Ann

Jacq, so glad you are feeling better! Marilyn, I am sorry you have such poor medical support...hang in there, try not to get discouraged, it is always so good to see your posts, even if it's just a line or two.

Lovie, those are some nasty symptoms-- I am so glad you are feeling a bit better. Hope you are on some maintenance steroids or the plaquenil controls the MCTD for a while.

Ah, Mary Ann, I am sorry life has gotten so complicated for you recently, and sorry the bills are so high-- you do so much for other people, doesn't seem fair. It is great making new friends at this stage of life, isn't it? I love my old friends, but the new ones have pulled me through some very rough spots.

I am still missing my mom an awful lot. I am realizing what a wonderful lady she was, what a beautiful person, how hard she worked to bring me into the world. It is an odd, empty, lonely kind of feeling. I am back in L.A., but it will take another month or two to clean out the New York apartment, so I'll be back there at least twice more. The flying is hard on my leg, but other than that I've been physically okay. Oh, yeah, MT-- the I bumped the little finger on my left hand walking up the stairs two months ago-- it was nothing-- and it still hurts every single morning. It might be getting a little better. And the fluorescent lights at school make the dry eyes really bad. But overall, I realize I'm lucky to be doing as well as I am, it just... it doesn't help the sadness, ya know?

Thanks,

--Cat