Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Life sure can suck!

Its been awhile but things arent going too good. My brother made it thru surgery on Oct. 12 did good first couple of days but bottomed out and they put him back on resperator, They had taken out top of lung and got that cancer but found out he has it in spine but doc still hopeful about radation because he says it is slow growen. Every time they l;ower it his oxygen level goes way down. They moved him about 2 hours away from here close to chicago and he was doing fairly well after they put a traq in and took out his feeding tube. but today they took out his resperator and he went down to 60 level oxygen so back in it went. 6 weeks wednesday and 1 step forward and 2 back. They say if he cant ever get off resperator unless he is rich he will have to live in nursing home, cant bear that thought. Too sad. I have been in lot of pain with lower back and right hip, right shoulder, neck and now as if all this crap going on isnt enough good old IRITIS CAME BACK THURSDAY NITE. its been less than a year since last time and always around holidays. Go figure huh. I sure hope everyone out there is doing okay. Take care....Connie

HI...So sorry to hear how your brother is doing. ..and how the pain,IRITIS are starting to make you feel. ..
when you're not feeling up to par,it's so easy to be discouraged...it's up to you alone to observe the first principle of getting well by keeping your spirits up..right now your brother needs all of your support so be positive for him...will keep you and brother in my prayers and thoughts for better days ahead...keep your faith. ..take care..God Bless ... HUGS..

Connie, I'm so glad you shared this with us, and I agree, that at times like these, life can really suck. I'm relieved to hear your bro came through this major surgery, but it sounds like it is one of several hurdles he has yet to overcome. I can totally understand your frustration and feelings of depression about all of this. It's hard to imagine bearing up under this amount of pain, stress and distress. So I'm sending love, hugs and prayers on angel's wings that you and your brother will quickly recover, and your brother will amaze the docs.

Take care, my friend...

Yeah... life sucks sometimes.
Really hope your brother can win his battle. And you should take care with the stress around his disease, cause it will make your AS worse, and he needs you.
I know that it is really painfull to see the persons we love in such a condition. My sisters husband is most likely condemned to death in some years. She was recently diagnosed with a primary biliary chirrosis, wich means her liver will stop functioning one day. I really love her. She's like a sister to me, has two young kids, and only 40 years old.
But we always have hope, don't we. I'me sure you do.
Hope your brother gets better.

Zélia

Connie, I'm so sorry to hear your brother is not doing well. My thoughts and prayers are on their way.

And now, on top of everything, you have iritis. Jeeze, as if you needed more. Please take care of you, OK? Sometimes I wish I could hook that spondy monster by the tail and slingshot it into oblivion. OK, most of the time, but you know what I mean.

Many huge hugs,

Hi thanks for your post. I try to stay really positive but my sister-in-law really is having such a hard time keeping positive so I am always trying to keep her up and the rest of family sometimes I think I am so tired but for my brother I have to keep my faith. thanks...Connie

Hi thanks for posting, it sure does help when I am so down. I guess what will be, will be, but it sure is hard. I moved all the way from tennessee to be close to him in ILLLinois but now they moved him 2 hours away. But I feel he is in good hands now, they speciallize in getting people off resperators. Gotta have faith and hope. Thanks and take care...Connie

Hi Zelia so sorry to hear about your husbands sister, it is so heartbreaking when there are small children involved. Maybe she can get a transplant soon enough. I just keep thinking that 12 years ago my other brother was in intensive care on resperator for almost 4 weeks because of heart and lungs, he was 45, he is in bad shape now but he is still alive. So maricles can happen. Thanks for post...Connie

Hi Kat, how are you doing. Yes it is so difficult dealing with all this and the pain and now iritis but what do ya do. Well to make matters worse today I went to the dentist and had 3 fillings. Boy I hate them, all that drilling gets to me. Of course not a sole in dentist office had heard of iritis and there real worry was is it contagious. I told them no but would love to give it to someone. haha!! Maybe an enemy huh. Thanks for posting sure helps when feeling so alone. I cant show any emotion to family cause I feel like I have to keep there spirits up and keeep them so hopeful. Take care..Connie

He's been on a respirator previously an came off it? Sounds like he's a fighter and it's good that he has such a wonderful sister to support him. Even though he's two hours away at least it's still easier for you to visit him than it was before. Don't forget to take care of yourself though. Hope you both feel better soon.

Sharon