Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Patience wearing thin.......

For those of you who remember me you know I've had my ups and downs. Recently I switched from Remicade to Humira and it was working fine for a while. I decided to inform my doctor that I was ready to return to work. About a week after informing her of this my pain started strong again. My mind can't take this uncertainty anymore and I'm having serious thoughts of just driving my car into a wall and ending it all for good. Just when you think this take a turn for the better life just throws you a curveball. I've stopped confiding in my wife for support because frankly I think she is sick and tired of the whining. So I just hold everything in and deal with it myself. Another issue is being treated like a darn drug addict when I need to go to emerg for percocet or the likes. My GP has been good to me in that case but I do my best not to take them when possible, and then when the pain gets unbearable, I get the third degree seeking some relief. Half these doctors just don't have a freakin clue what AS is all about. I just think I've had enough.........

Scotty...

Hi Scotty

I do indeed remember you, and if I could, I would give you a big hug right now.

I'm so sorry you're feeling so down and frustrated. Most times, percocet's seem to be the only pain reliever that helps take the edge off the pain. So far, I've beeen lucky with my doctor who prescribes it for me, although I find myself rationing them just to make sure I don't run out before my next appointment! I too have grown tired of complaining to my husband. It's not that he doesn't care or that he doesn't believe me, it's just that I'm annoyed with myself when I complain all the time that I find I just don't say much some days. It's so disheartening and frustrating when you have a hard time controlling your symptoms and sometimes you feel that no one understands your pain. I'm glad you're sending this post to all of us and I hope you can seek some comfort in knowing that many have been there and many of us are still there - (im)patiently waiting for a light at the end of the tunnel. Please don't lose hope and try to stay strong.

Keep in touch, Sera.

Hi Scotty,
I absolutely rememebr you and I know you have been in this state before. I can't recall if your taking a anti-depressent, and more importantly a newer type which helps greatly for pain, ie, Effexor or Cymbalta. I also take Neurontin .I keep in all inside of me and sometimes I feel like I will burst. I would guess your increased pain is due to the thought of going back to work. It is amazing how stress triggers a flare . Maybe it is too soon to consider work quite yet. Do you get a sick leave benifits while you are off ? That use to make me feel sick until I had the first tweleve hour shift finished and my confidence started to re-build. I had decreased my Effexor over the past six months and have paid for it dearly. I am slowly feeling better not dreading the mornings and my P>F in my feet is better, well it is there but masked with the pain reliveing effects of Effexor.
I am glad your back posting we all need each other.


Janet

I am currently taking Paxil and have been for many years. Yes, I do get insurance being off work. I just feel the longer I'm off the better chance of my company finding a way to get rid of me. They have been great so far but I'm sure their patience are also wearing thin. I feel so stuck!!

Scotty...

Scotty, I'm so glad to hear from you, even if it is to vent and get things off you chest. I was wondering where you've been. First off, PLEASE don't drive your car into a wall. I have to admit, everything you wrote is how I have been lately, and, I have a feeling we are not the only ones. Please stay hear and talk things out with us. I know there is no lonelier feeling than having no one to talk to and understand the rollercoaster ride. I know my wedding vows said "in sickness and in health", but frankly most people when they get married have no idea the impact of living with someone with AS. I know mine doesn't want to hear about it either and that is frustrating when our "soul mate" ignores our stuggles.
I'll send hugs your way and hope it will help some.

Cindy

Ah hon, I'm so sorry that things are rough again.

I have to fly, but wanted to know I'm sending lots of white light and love your way.

Many hugs,

Scotty,

I am sorry that you are having such a rough time right now, I am glad that you let us know.

I will pm you later when I get a chance..keep your chin up.

Hugs,

Lisa

Hey Scotty,

Realize this disease can be very frustrating. I nearly tried ending it all as well and was so scared of acting on it I checked into the hospital... that was 5 years ago now and glad I did not. The members here really helped me out after I got out of the hospital.

Take one day at a time, that is how they come. We here are all pulling for you and you can always vent here or look for some support. Who knows what tomorrow brings... new drugs that members have been posting about, discovery of the other genes... a lot of hope for the future!

Hang in there Scotty

Tim

First of all, I wish us all hope and peace.
I am relieved to hear that mine is not the only spouse who isn't picture perfect when it comes to support. He just doesn't want to know, so he's not educating himself and he just mopes around; it has not been easy.
The uncertainty can be debilitating, feeling good today and then poof, tomorrow can't get out of bed.... I guess that's our reality and we have to find some way of living in it -- wish I had more answers.
BE WELL