Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Sick and tired

Sheew. Another day with major pain In my chest, back, neck knees and a can't with attitude. This is the day you think you are ready to give up. Then I had to miss work like I could have rolled off the. Bed and get dressed and made it to the jail. I don't see any future in this so why try ...... Sorry to complain it really isn't in my nature bu this A/S sucks
guitarman

Chuck,

How much Remicade are you on? I found that my doctor started me on a very low dose (3mg/kg). It wasn't until he increased the dose to 5mg/kg and increased the frequency to every 4 weeks that I got real relief.

I'm so sorry you are going through this. Every day I think about quitting my job, not because I don't love it, but because I'm just not doing a good job.

You're right. AS sucks.

I am on a high dose 6 weeks apart. I think it's 5 or 6 in however he measures it. I am sick of calling In and sick of being sick anyway. God there has to be a way to make this livable. The chest pain to me and center back...... Oh my gawd it makes you wish you never were born. To late for that now and nothin really really helps arggggg

Believe me you are going to have a lot more to deal with concerning the AS. But you have to decide what life is really about and what makes life worth living. Life is not about being pain free, nor is it about having everyone on your side. Life is never perfect, nor is it about having alot of money. You yourself will have to decide that there is much more to life. Sometimes it does me good to see others going through something different than I am. Here in Oklahoma there is a little -I think aobut 6 yr old boy that just survived Spinal Meningitis. The drs just amputated all four limbs off to save his life plus do reconstructive surgery on his face which will make him look entirely different. Come to think of it, I think I may in all my pain and misery have more to live for than that little guy does!!

Wow Jean, that sure puts things in perspective doesn't it! I'll be sure to remember that little boy in my prayers tonight. How tragic for him and his family.

Ann

PS: I'm so sorry you are having such a hard time Guitar man. Some days are really hard and I think all Jean Angel was trying to do was maybe help you to get your mind off of your suffering a bit. It does sound like your AS is not under control and you should be contacting your rheumy to see if there's more he/she can do.

Hope tomorrow is a better day for you.

Ann

you know, guitarman, some things come to my mind when i read your story. first extreme frustration with the pain. i sure understand that and then, you are a man. lots of issues with men who feel they must be the breadwinner, etc. strong and all. please, for your own sake, let us in on the feelings and your fellow friends and family as well. we ladies with the disease, as you have likely read, go ahead and vent about the unfairness, and the debilitating loss of normal life, or more importantly we mourn the loss of the people we USED to be. actually, we are all the same with the disease. it is an awful way to live. the only thing we can do is get the best doc to help us get the right meds at the right dose, a good pain management center with some real solutions and keep up the communication with the family. for all these reasons, we women and men who have the disease share what i have just listed. we are one in the same.

so, let off the steam like you did. get more specific. which part hurts the most? this is your safe place to come to tell us how hard it is to deal with. we listen, and we try to help.

i am personally all about coming to some level of acceptance in my diseases, and i have a few. i accept that, well, i am stuck with them, and then i accept that i have to move on and KEEP living. is there really any other choice? NO!!!

prayers and peace to you and welcome to this painful but not lonely journey. we are there every step of the way if you let us. sequoia

Thank you all for the words of assistance. I get on my cry baby kick sometimes while waiting for my meds to kick in. I am so used to directing emergency situations and have been so good at it in the past. I have always been the go to guy. I do have a support group at home that are willing to help any way they can. Especially my wife wh is diagnosed with fybromyalgia. I just don't handle my own pain very well. Then I let my pain do my writing. Sorry for any aggrivation this may have caused as I also realize that there are others worst off than me. But again your wors of wisdom are so helpful, especially during tough times. Again thank each and every one of you .........

Guitar dude! You are not a cry baby nor are you an aggravation. This is where all the grief is allowed to happen. Let it rip! Whine away! This place is a great place to go for info and an awesome place for support. No judgement here. Don't be shy!

Guitarman- It was so nice to read your story as I got up this morning. Not glad for your suffering, of course, but, glad to see someone else as depressed as I. Makes me feel not so alone to know I'm NOT alone.
I love what Jean wrote:
"Life is not about being pain free, nor is it about having everyone on your side. Life is never perfect, nor is it about having alot of money. You yourself will have to decide that there is much more to life."
I am at that point in my life - deciding what is most important, and what to live for. I know now I've got to give in, and get the right help for a better quality of life. I can't fight this myself. I pray for you, and I pray for me - and everyone on here to have better days.

You are not a burden. Everyone here has good and bad days and takes a turn venting on the bad days. I can only nod my head at sequoia's wisdom.

One additional thought, maybe the Remicade is not working so well as it used to... have you already tried Humira and Enbrel? My daughter is starting Remicade soon for her Crohn's and from her GI I understand that while kids do pretty well with Remicade (chimeric human/mouse material), adults often find it loses effectiveness and do better on Humira which is from all human material.