Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club Accepting your fate...

I know what you're feeling! Sometimes I think I'll never get my vision back, even if I get rid of the iritis completely. Sometimes I look ahead to the future and hope I don't have to be on social security disability like my Mom is, although at least then I would be guaranteed health insurance! I get so jealous of healthy kids my age with their perfect genes who ruin themselves with tobacco and alcohol and whatever other drugs and think; "How could you do that to yourself? Do you have any idea what you have?!"

I like the approach of taking things one day at a time and trying not to look too far ahead. A phrase I've been repeating to myself: "I may not win the game, I may not even finish, but at least right now in this moment, I am still playing, and I am going to keep playing." I'm still going to continue doing what I'm doing, keep moving forward, because no one knows how this disease is going to turn out.

Emmie,

I have been dealing with the same thing: how do you accept it all? I had both my hips replaced several months ago because they had completely fused. Everyone thought it was going to "fix" me. But it didn't take the AS away or the scoliosis or the pain. My sister keeps bugging me to do my therapy and try to stand straighter, but sometimes the pain is bad enough I can't, I have to take a break. She (or any other normal, healthy person) doesn't understand that I will have pain everyday for the rest of my life. How do I deal with that, is it possible to accept?
I don't keep very busy during the day, I am at home, I don't get out much, but I don't allow to let myself get down or mopey during the day because it wears me out and it upsets my sister (although she thinks nothing of it when she is whiney and mopey because her boyfriend is gone on vacation, gee I just wish I had a couple of friends). So the depression and crap always hit me at night, I allow myself to feel down, I have to let it out somehow.
Sometimes I wonder if anything will ever come of my life. Sometimes I wonder how to really lve with this stupid disease. But then in another way I feel very blessed to have this disease and to have gone through everything I have. I have learned so much, it has made me who I am today.

hey emmie, well this post breaks my heart. it reminds me of where i have come from. i am 34 now and have gone through the 'why me?' question. in fact i am still coming through it now.

in the end i have had to accept it and accept i may need help with meds, support from loved ones . everyone has their cross to bear kind of thing and this is mine.

i know having AS comes with its own set of problems. pain is one thing, stress over side effects from meds is another. the fatigue etc. i too, as another poster said, take all this one day at a time. it is all you can do.

keep your chin up and get strength from where ever you can.

all the best. xx

I'm 29 and can totally relate. I haven't been officially been diagnosed yet, but I've been dealing with chronic pain, among other symptoms, since I was about your age. I just had my first, and probably NOT last, spine surgery on July 6th...at 29 years old. I feel like I'm trapped in the body of an 80-year old. In fact, my 99-year old grandfather can probably run laps around me.

On the one hand, I want to do things myself. I want to be the wife/mother/daughter/sister/etc, that I think I should be at my age. On the other hand, I end up pushing myself too far and end up in bed the entire day. I feel bad because I've got 3 children, and I feel that they are missing out on their mommy. My 10-year old son is so used to seeing his mother in and out of the hospital constantly...it's become the norm to him, and I HATE that.

For me, it's difficult finding a balance between doing things on my own and constantly letting others help me. I love my husband dearly and I love the fact that he's so willing to help. He really does do a lot. But I don't want to have to rely on him for everything.

It's hard to say when you'll finally accept your limitations, to be honest. As I said earlier, I've been dealing with this for about 7 years now, and I still have days I don't want to accept it. But for me, a lot of it has to do with having kids to take care of, and I feel like it's not an option for me to lay down and let my illness get the best of me. My children deserve better than that. They help to keep me motivated. When I start to feel sad about the fact that I am not able to do the things I want to do, I just look at them and watch them laughing and playing, and I know it'll all be okay.

I can relate to many of you. I feel that age 29, that I have lost and had to give up some things I used to enjoy and some of my dreams. I was officially diagnosed with AS a year ago this month. Shortly after my 25th birthday, I started having problems and saw many doctors who could not figure out what was wrong with me. I felt so angry that I missed out on having fun doing normal things that most people in their twenties normally do (taking trips with friends, dating, being able to finish college in four or five years). My energy level was low and I felt like a 90 year old instead of a twentysomething.

Before I started having any problems, I used to run, do dancing areobics (which was really fun) and spent hours on my trampoline during my teens. Basically, I was very active and could out run some of the other kids in my gym class on the track.

I also had dreams of finishing college by age 26 and getting married and having a lot of children. My health problems slowed me down, but I finally got my four year degree at the age of 29. I have not had much of a chance to go out on dates yet and I wonder how my AS will get in the way of relationships. I have decided that when the time comes for children that I will adopt ( I do not want to stop treatment so I can have kids of my own).

I have had to give up runnning and doing my dance areobics since I started having symptoms of AS. It was hard for me to accept it at first, but at least I can swim, do yoga, and walk.

Most of my friends never had to deal with life altering conditions before and they do not have any idea of what it is like to have AS or deal with doctors. Some of my friends do ask questions about what my treatments are like, how often I have to get the treatments, and what limitations I have. I have met one other woman in one of my classes (who has RA), and she had an idea of what I have to go through. She was very understanding also.

On a happier note, my treatments have made a big difference of how I feel and I can enjoy myself again. Even though I still have limitations, I feel grateful for my treatments. I tell my friends who do not have to deal with health problems and treatments at such a young age that they are lucky.

It would be wonderful if a cure is found for AS and other diseases.

I'm very emotional about this topic, I first remember hurting my back when I was 12. I still played sports (soccer, baseball) through High School but I would have to lie down after the games because of bad spasms. I had to quit playing golf in my early 20's I could'nt walk the next day. By the time I was 30 I had pain and loss of feeling in one leg. I had a fusion L5-S1 at 32 and had the screws removed at 33 because of so much pain. I could get out of bed but couldn't sit in a chair for more than 20 min. I layed down most of the day. It was very hard to walk and still is. My wife of more than a dozen yrs. left calling all the negative things I would not say here.
I have a daughter and could not let her see her father be a big loser like my X called me in front of her. I went to therapy in the pool, best med ever, went back to college part time at first. I layed in my car between classes, at the college handicap center they suggested that I tape the lectures because I told them I couldn't write everything down because of the pain. So I did and at the age of 40 I had a BA and Teaching Credential and a job at a new High School.
I was on SSA Disability until the teaching job started with a "Degenerative Spine Disorder" later it was called end stage AS when I had to "accept my fate again" at 48yrs.
Now at 53 I'm still acepting my fate, but I'm back at the therapy pool building stregnth so I can go camping and fishing enjoying nature in Lake Tahoe. I still can't walk around the block or take much of a hike and that is what girls do here. I do hurt very much, on Remicade and 15 other pills and get awakened just about everynight from my sleep or can't fall asleep, but I look out my window at the beautiful forest, thank God and accept my fate.