Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases The Worst Thing About AS

I wasn't trying to bicker, I did send a PM to the original poster. Haven't heard back yet.

Sorry Donna, not trying to argue just trying to not be beat down by people who think I am this big bad monster. I am sick of my opinion being the wrong one. Guess what, I have a voice, and it is just as important as the next. And for the record I didnt start any bickering, I only try to defend myself when I feel like I am being picked on. Like I said previously I care when someone wants to die because of the AS....it hits home. I want that person, in this case Dale, to know that yes we got handed one nasty hand of cards....AS is hell to live with, but if we try, make a major effort to, we can find reasons to keep going. I think everyone with AS goes through depression, knowing we will always be in pain. It isnt an easy pill to swallow. But please dont beat me down with a stick just because I am trying to get someone to see that life can be good, that we can get passed the sadness and the pain to live a productive and fulfilling life.

Sounds like a truly rough day! Hope tomorrow is better! No prophetic words of advise or wisedom, just know there are other people out here who understand what you're going throuh! You are not alone...

My father did have continual AS and it did kill him at age 44. He had severe curvurture which compromised his lung expansion. Had an asthma attack ....couldn't breathe and then a fatal heart attack. This was many many years ago...long before the treatments and knowledge of today. I feel for those who never get relief but I do believe that new and better biologics are going to be available soon....keep the faith.

There have been many different "takes" on my original post. I'd like to comment in general on what I've seen. I haven't been online for a while, haven't felt like it. I want everybody to know that I appreciate everyone's comments. It's nice to find both people who sympathize as well as people who offer a "kick in the butt", as I'm sure all of you know, both are important. It's far easier to take a well-meant "stop whining about what you've lost and dwell on what you have" from someone who knows what it's like. This is the only place I can get those well needed kicks from someone who deals with the same thing. (I was told once by a well-meaning coworker that if I just improved my diet, both the pain and the disfigurement would be gone. I wonder if she has told the researchers this.)
I just wanted everyone to know that there isn't really a wrong way to respond to what I originally wrote. Since people here know what I'm faced with, both the sympathetic ear and the kick in the butt are needed. Thank you all for your comments.

Dale, your response was really uplifting and inspiring. I am glad you are in a better place today...and I hope it lasts a long while. That was an amazing reply to everything above. Well done.

Dale. you are so right. Last week I did some volunteer work for an art gallery. It is accounting, I use to get paid a LOT to do it but I can't do it for very many hours so I ask her to cover the taxis (NYC). The location by bus/subway would have taken an hour. Free work and I only asked for taxis fare!!!

I walked in and she said "well, you seem to be walking fine to me" "what is it? Arthritis?

anna

Thanks for your original post Dale. The second I read it, I forwarded it to my mom. I am like you-I wish I had "flares". I have the exact same thoughts and am glad that I'm not the only one. I was surprised to see all of the posts about not liking the negativity. I'm glad you didn't take offense to it. I did. AS is a nasty, painful, and humiliating disease.

With my first illness, I told myself that I was glad that I had it because I knew that my life's work would be helping people, especially people with illnesses. It made me a stronger person and I was proud that I had gotten through it. Then AS came when I was 18. There is absolutely nothing worse in life than pain. It has changed me-that's inevitable. Now I don't care that I am a strong person. I don't want to have to be one.

I am very positive, hopeful, and grateful for what I have. I do have negative thoughts at times like most with AS. I just want people to realize that not everything has to be positive. That is not the real world. If you don't like a post, don't reply then. Who are you to criticize someone's thoughts and fears?

Dale,
I've been here mostly as ghost reader for several years, but had to comment on your post. Its EXACTLY how I feel most days lately. I could have written the exact same post.

After 20yrs. I too can no longer work, am on company STD and going to LTD and just applied for SSDI. Since I'm 45, I hired attorney to help me thru it. If I don't get ok'd for SSDI, not sure what I'll do for my family & especially benefits. This worry is eating me up, but it is what it is.

I know how it feels. KurtAS

Feeling anxious, in pain from head to toe, no one understands or cares to in real life. Scared about living in pain the rest of my life...scared I cant be me on a daily basis because of this disease. Afraid I will not be the mom I want to be, or the wife I want to be. Nervous that outsiders (and even family) will think I am a druggie and a hypochondriac, because they cannot see my pain, nor feel it. Terrified I will lose insurance, my doctors, my lifelines for the only meds that help atm, which are narcotics. Even more afraid the narcotics will stop working at some point, or that my disease will progress to the point of nothing helping the pain. I have fears...we all have fears, and having AS only makes those fears bigger....how will I get out of bed in the morning and get my daughter off to school on time, how will I be able to be intimate with my husband without him knowing it hurts me, how will I pay my bills when I cant work because of the pain and fatigue. I am human, and I am scared too. I am sad, scared, lonely, mad, anxious, BUT I am also hopeful. HOPE. Life is scary period, add in a disease that causes chronic pain and life becomes unrecognizable. I did not write any words above to upset anyone, or to start a fight. What I wrote above was to simply remind everyone that we all have hope. Yes our lives are hard...in so many ways. I cant remember the last time I didnt hurt. But I am alive, and it reminds me of that saying it is better to have loved and lost then to have never loved at all....i kind of feel like it is better to have lived and be in pain then to not be alive at all....i just want to remind everyone that there is hope, all around. it may take some digging to find it, and if you dont want to see it you wont, but when you are ready, hope will be there for every single one of us. Hope that tomorrow will be better, that it will bring a cure or a better treatment, hope that life will not just be ok, but be GOOD. It isnt a matter of not commenting to a post if we have nothing good to say, for me it is saying what I think needs to be said so that maybe just maybe someone will look for hope instead of dwelling on the hurt. I never wanted to add to the hurt, just want you all to know that there is more out there for us....