Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Spine transplant please??!!!

Hello Possi..
Sorry I didnt get to finish responding yesterday....busy week as you can see from my other post.

I wish I had a new spine..like many others here. Just shy of 23 yrs of this back business and it weighs me down ..I want to do so much but I have to always stop and think "will arthur be off that day?" " is my mom or robert busy so i can ask them for help?". I wish I could just get up and go. A good friend of mine is having a birthday party for her 1 yr old son and it's Sat. but Art works in the afternoons. Sofie is big enough to listen and miss G is great but the LITTLE man...he's in a whole other league of his own. He flies by the seat of his pants. He's 3 but he weights 57 pounds!!! He runs everwhere and I cannot lift him to stop him. Heck he's already half my height. He's gonna be big ol' football player one day. Thats the part that tears me up inside. The mind is willing but the body is a train wreck.

My rheumy has mentioned pain management as our next plan of action if the humira doesnt work. I havent heard back from the pharmacy so I hope to start any day now. There is so much damage there already. The pain never goes away. 24/7 like you..I stop and think..this is not normal..why am i UP at 3-4-am??? Art has helped me a bunch this week. He had to tell them on the phone today..they were nuts. Serious summer fever. My son still thinks he is spiderman and flies through our little home. He hugs me but almost knocks me down he's so strong. So it's Friday morning..and hoping I get my brother answers tomorrow...then I can deal with mine on Monday...I want him to know it's gonna be okay..we're all here for him.

well enough ramblings from this buggy..going to try to get some sleep...try.

take care possi...

Hey sweetie, I'm so sorry you're in such horrible pain right now. Those thoracics are a b**ch, that's certain. I have some idea what you're talking about, lovey, as you know, and I just wish I could come down there and make it stop. You are far too special to be hurting like this.

I'm keeping my fingers crossed for you on the Humira. Hopefully, it won't poop out like Remicade did. Have to say, the idea of sticking a needle in myself doesn't sit well, but like you, if I have to do it at some point, I'm happy to.

I'm not surprised you're flaring right now. There's so much worry in your life these days. Treat yourself with extra TLC, OK?

I'm sending lots of white light and love your way, Bugster.

Warm hugs,

((Ladybug)) I have been thinking of you and your brother and your family. I know how pain wears you down. I started this stuff with RA diagnosed at 14 but had been sick a long time before that; then they came up with the Lupus and AS in my 20's and keep adding from there. I told my hubby tonight that I have "lost me". I have nothing going on in my life to talk about because I am home all of the time with me and my pain. So sad when I realized that my life has become so limited.

I don't know why anyone would want to talk to me. I don't have anything to talk about because my life is drs. meds, pain. I am making a resolution to quit mentioning it. I already have to my sisters who just don't understand at all.
I just need to find something that I can do physically to occupy my time. I miss my old friends since the move and the fact that I can't do the things that I want to do (like you). I have a lot of thinking and praying to do.

I will continue to think of you. Your precious children make me smile. Thanks for sharing them with this grandma who is really missing hers. Oh yes, our kids always meet for a week together in the summer and they were down in Mexico somewhere and my 11 year old grandson caught a 7 ft. Marlin. He is SO thrilled. They are having it mounted. They left it there and then they ship it to FL where they live anyway to be mounted. It will take several months. My 18 year old grand daughter caught a sail fish that was about that long but she opted to free him back into the ocean. They had a blast. I am so glad they work at staying close since they live so far away. I have been so sad that I couldn't be there too. (Is that envy from a Mom)? Something else bothering me. Who would envy their children!


Possi

Hey Buggie,

take heart with the pain. It is hard when you have thoracic pain. I guess that is why I have my ouch scale and ouch factor. It helps me to relax and laugh a bit more.

I know what it is like to have a really bad day because I had one the day before yesterday and again yesterday, except my pain is in the butt!! Yeah, I still feel it where I hurt the coccyx.

Take care buggie, and I will be thinking about you and praying that you will get some relief. BTW, if you are going to a rosary, stay off your knees

MaggieinOz

Hi Ladybug
Sorry to hear the pain has a hold on you. This sounds a lot like something that happens to me. My Doc and I wrote it up to a rib getting twisted and that caused all sorts of other probs with my back. If it is such a thing it does go away as mysteriously as it shows up. The thing that helps me the most is to lay as flat on my back as I can and take long deep (as deep as we can lol) breaths. Sometimes i can actualy feel the pop and after a short sharp pain in my ribs and back then, all is better. Sometimes i wake up and its just gone. I have noticed that when i focus more on my posture I dont get these pains as often. Sure hope you get some relief and Ill be praying for you and yours!

Hi Buggie! Isnt it horrible about the time you think this is about all the pain I can stand and then more. Is this like a test from GOD. If it is I am just about tested out. Any way I sure hate to hear about this now. When my neck I think between 5 and 6 herniated I was just about to suck on my tailpipe of my car, thats the pain I was in. Down my shoulder and collarbone area. My pointing finger was just like it was on electricity all the time. I sure hope yours isnt herniated. Mine had bone spurs on both surgeries of neck. Actually I had them on my knees also. They say my lower back has one also. Hey is there a connection here. It sure must be hard taking care of kids and dealing with all this pain. I have been in so much pain lately that 15 mg. of vicodin doesnt touch it. And my kids tell me I am being so grouchy. Any wonder why??? Yes I am and then feel guilty for it. Well good talkin to you and hope something gives soon. Take care Connie