Barbara

You are missed. I hope you are getting things together and not too sick and tired. Looking forward to an update.

love and prayers

carol

Miss you too Barb. Concerned about how you are doing and if you are getting better. Hope to hear from you soon. Still in my prayers. HUGS! - Kristin

Barb, I join all your dear friends here in hoping you're doing well and that the move went smoothly. I wish you could have moved without having to go through the moving part. "Poof" and you're there. I think we should all ask for a fairy godmother for Christmas, a special one for lupies.

Do let us know how you are as soon as you're up to posting again.

We miss you!

Love,

Pat

Hi Barb,

It was so good to hear from you, but I'm heartbroken to hear how bad things are for you now. I am happy to hear that you're seeing a therapist. Barb, please don't feel like you have to post here or that you should be on more, but we just want to know that you're ok. Rest and take care of yourself. We do worry so about you and I hope you know how much you're loved and missed here. We're all rooting for you to start feeling better soon. For now, I hope your wound finally heals and that your hearing next month goes your way. If you shouldn't be on SSDI then who should????

You take care, Barb. I think of you all the time.

Hang in there,

Love,

Pat

Hi Barb,
Sorry to hear that your port hasn't healed up yet. They need to get it fixed up. I can't believe they are making you go through all that hearing jazz, how ridiculous, or should I say disgusting, or both. I thought if you were like really sick you got it right away. And the movers broke stuff, like how hard is it to move stuff. When I was a kid we moved ALOT, like twenty times and I remember having to glue stuff together afterward and it got so we would talk about each crack and what move it happened on.

I think your docs need to get some plans together for you because it seems like their success rate isn't so good right now. RA too. And they want to give you another strong medicine. Well, don't waste time replying to me, my brain isn't working so well lately and you need to rest. I know you've probably been through all of everything, but maybe a second opinion or another set of eyes might be good, and not just a brush off to someone who says "but you're seeing the best". I'm sure you've probably been all through that, but it just seems like they've had enough time to get it together, though you don't want to lose the team you have either. I hope they are making sure you are getting proper nutrition to help you heal faster.

The therapist sounds like a real "upper". They can be so weird sometimes. They tried to give me one that was barely 18 once at the "free mental health" place, and she was like Barbie, or Clueless, or something and she couldn't fathom anything, OMG! and then I had the one with puppy dog eyes and I think I put her into therapy, but I had some good ones, too.

I pray for you and hope you heal up soon so you can feel better and you can do the things you want. I hope all is well with your family and my prayers are with them too. Please get better.

Barb,

I'm so sorry that you are having such a hard time. It must be so frustrating for you with all that is going on with your health to get a treatment plan going. In the mean time, please take it easy and take care of yourself. You are in my prayers.

Take Care

You survived the move and I am so happy to hear from you! Sorry, your still feeling crappy. I'm sure the SSI will work out. It is hard with so many things going on at once. Do I live with severe joint pain to the point I can't sleep or do I take the medication and hope I survive another year? I hate these tough choices. It is scary. Especially, when they don't have a plan "B", are afraid to give you ANY medication and their only concern is to keep you in a "happy place". I'm there now, it is creepy. I always get the feeling there is something that they are not telling me about my condition(s). The way I see it the whole thing isn't up to me or the doctors. My job and their job is just to do the best that we can with it. I try to research a lot in case there is something the doctors or myself are missing. It is better that my focus is on my getting well and not on the creepy stuff.

It sounds like you have a lot of things to focus on. Sounds like you could use a personal assistant :) Still, one day at a time. Hope you can focus on the positive. Sooo hard to do when you feel crappy, but sooo important. Our shoulders are here for you just in case. I am glad you can feel how much we care about you. HUGS & Be well - Kristin

Barb,

I am so sorry to hear how rough things are for you.  I have been thinking about you a lot and I want you to know you are not alone.  You are in my thoughts.  I hope the doctors can get together and come up with something to help you feel better.

Hi all, I had to look up Humira so I thought I'd share what I found with ya'll... Research said... Humira is a medicine called a Tumor Necrosis Factor (TNF) blocker. Humira is used in adults to reduce the signs and symptoms of moderate to severe rheumatoid arthritis (RA) in adults. Humira can be used alone or with methotrexate or with certain other medicines. Humira may prevent further damage to your bones and joints and may help your ability to perform daily activities. I hope they'll clear you for this soon and that it will help with your pain and other RA symptoms, Barb. Cheers,

Hi Barb--
I'm glad to hear you sounding so peaceful and relaxed. I'm sorry things are going so lousy with your body, but there will be some change eventually, things will not stay the same. I'm glad you're getting good meds and I hope they do a good job rotating them and keeping them working for you. I get really mad they illegalized medical marijuana because this was another option for people, non-narcotic and non-addicting, and I understand it helps with nausea and increases appetites. People just don't have anything better to do than cause problems for others it seems these days, and to what benefit?

Well, speaking of something to do, you can indulge yourself in the guilty pleasures of computer gaming, I like crosswords and all, especially if I can get the family involved in helping me, and I go to washington post because they are free and pretty challenging sometimes the link is:
http://crosswords.washingtonpost.com/wp-srv/style/crosswords/daily/front.htm
and if you like solitaire, there's like this crazy free solitaire with about 100 different types of solitaire and all the instructions how to play
www.goodsol.com. Its a free trial, but the counter only counts the days you play it so it lasts a long time.

I hope you take it easy, I know its hard in a new house, wanting to get everything set up, but maybe this could be a time for you to work with your daughter to help set things up and explain the history of all the stuff you have and explain why you like things in certain places. I found teaching my son that really helped him organizationally, he hadn't really thought about things like that and he got to know why some of my stupid knicknacks meant so much to me, and to see the things he got me through the years.

I'm sure you know all this, I just worry that you do too much. As for the transplant, you are strong and will make it through. Hopefully it will give you great relief.

Please just don't let anyone make any decisions regarding your life and treatment for you, or let them pressure or guilt trip you. You seem pretty strong, so I imagine you will be fine in this regard. This time is so precious and it's yours to do with what you want, how you want, even if things might seem futile, or to cause you more pain with not much gain, its your decision how much you will put up with.

The docs are always wrong about time, focusing on worst case, and you have the right to decide how much you will stand. My grandmother was guilttripped into quitting all treatment for her inoperable brain cancer, I was so mad because she wanted treatment because she wanted to be there for the birth of her granddaughter who was due in a month and to do some other things and make sure everyone was taken care of.

I got in a very bad fight with her nurse, who kept harping on quality of life and expenses, and I was near pushing to get her fired. It was my grandmother's decision what she wanted to do, what she wanted to put up with, and she had things to do. She took therapy that they insisted would only give her a month and it gave her nearly two years, during which she had a period of unexplained remission and got to know and care for her granddaughter and do special things for her family. I was so happy she fought, followed her heart, and stuck to her guns on things. Had her decision been the other way, I would have fought for her wishes to be followed, because it was her decision.

You sound better, relaxed and mellow, and I hope you are enjoying your family and new house. Please know my thoughts and prayers are with you and your family always and that you are such an inspiration, the way you have handled things so gracefully and with so much class. Wishing you much happiness and peace and fun with your family. ((((hugs))))

((((Barb))))