Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Foul Mood

All I can share is that I don't allow myself to even look that deeply into the future. Call it escapist or whatever, but one can spend a lot of time worrying about the future and it's just a guessing game. As bad as this illness is, I haven't heard of anyone being in a nursing home at 45 or 50. Today I almost got hit by some idiot that would not give me an extra few seconds to cross the street. He was in a convertible and actually yelled at me. It was so close I could feel it whisk by. One of my coworkers was hit walking across this same street and that driver ran.

All I could think of was that if I were hit, what a waste it would have been because the insurance company and my employer wouldn't have had sufficient time to recoup the major expenses they paid for my unplanned brain surgery this year...another shocker that has even added to my philosophy of not thinking too far into the future. Now I'm still dealing with some problems that are scarier than the AS. I go with the saying that "life is what's passing you by as you're worrying about the future." Best wishes


This bunny Kicks AS !

Linc...you are too cool...
Thats what I love about you..your attitude.

I felt the same way..when I had to get a cane...I was bummed out. I was a spry 32 and WHY did I need a cane??? Art tried coaxing me..and my Gianna..but I was stubborn. Then it dawned on me one day when Woodcrvr...Gary told me..to blankity blank with what everyone thinks....you are you and thats that.

He was right. I thought..hey ...If i'm gonna be in pain...I'll be damned if I am not gonna look my best while shuffling away!! I found a super cool cane next to my GP's office..for about 17.00...woo hoo!! The first I bought was an orthopedic black one at the pharmacy....real ugly and clumsy. This one is collapsible...with dark purple and black orient print..and a black wooden handle....pretty snazzy. I get compliments on it everywhere..young and old. And when the time comes for a wheelchair...I'm having a ladybug painted on the back of mine...cuz' like the ladybug...I'm gonna keep on flying...even if in just spirit.....AS is NOT taking that away from me!

See ya' buddy...
and keep being cool....

"I'm not giving up till the spots come off my wings mister"
Angie

Johnny
Dont shut us all out like this.
We are all trying so hard to tell you that we care and are here for you.
There is nothing much worse than feeling so alone. When you say that those of us with families cannot understand, you are wrong. You do not understand that for some of us , life hasn't flowed as smoothly as you think.
Personally, in the past, I have been through incredible loneliness and feelings of hopelesnes. I had a period in my life that I could not describe here, nor do I ever talk about it with anyone now.
The point is though that I have come through that and you will too. You cannot just give up - you have to allways keep hoping that things will improve - they will.
As far as the pain goes - we all have to live with that as best we can - that is not a reason to give up.Imagine how terminally ill people feel - in comparison -man, this is nothing !
I'm not very good at these pep talk things but I really get upset when I find that someone feels as bad as you do right now and I just want you to know that we care and that things will change - things allways change.
We Love you Johnny
Keep it together for us ok ?

Maggie

Well honestly, I've never even thought about the possibility of a wheelchair...but IF I get one it will have a bunny painted on back and I'll race ya


This bunny Kicks AS !

Ohhhh....yes...now that's some race talk there....bunny and a bug....LOL
The thought of a wheelchair is not a thought in the near future either...but Art said when I'm elderly..he can see me just widdling around...not letting my shopping or shoe collection stopping ..not even if I'm in a wheelchair!!

Hey...we all have our needs!!

See ya' snowshoe...

"I'm not giving up till the spots come off my wings mister"
Angie

Hi, I know your frustrations. But remember, medical science is coming out with new meds all the time. Try out one of the studies.

Betty

Johnny!!

You have opened up some discussion here!! Please remember that in today's world even if you don't have someone to hug right in front of you, that you have a world of hugs online, dang it!! (warding off censors)....just remember that with KickAS, people from around the world can send you peace and love....how bodacious is that??!!

Five years ago, I was doubled over in pain, not able to explain to my girlfriend what was happening....and today, I have a worldwide network of people at my fingertips who KNOW...what it's LIKE....this is getting into Oprah territory.....

Man, Oprah should do a show on KickAS.....and Johnny, I vote for you as a guest...hell, it could raise the bar for research....just a ramblin' thought...

must go crash, have been sick for days....
Peace
Linc

Linc O'Brien

Hi Johnny!

I have carefully read the whole thread, and especially your posts. It seems to me that your most acute problem right now is being lonely - the AS pain and the problems that follows with it, only highlights your lonelyness. "Not only am I all alone in the world, but having this sh#¤AS, noone will ever look my way and the future is just a dark pit".
And what can Jade tell you about lonelyness? A lot... Like many other posters here, I've had my share. I was alone for many many years, until I finally met my man not so long ago.

My advice to you is to channel this sad and mad feeling inside you, and to start to react and attack this specific problem. Much like what your immune system is doing to you by attacking your spine...

The problem is lonelyness? Well. There are ways to stop feeling lonely.
Writing posts on kickas.org is one possible way to get out of it. But like Rox wrote, internet relationships do not contain enough ingredients for a human being to survive. They are essentials for making new virtual friends and sharing some everyday and specific problems, but real life relationships are much better suited for you right now.

Finding a girlfriend is easier said than done - they still don't sell them at the store...(at a point I used to think that some cultures had a perfect solution, giving away their teens in marriage to relatives, without bothering about this "love" and "right person and chemistry" things... )
So if I was you I would settle for a generic "human contact" for a starter. You need some good, real friends Johnny! You need people! I don't know your age, I would guess you're in your 20's or 30's. Your mom might rock, but she should not be your only contact in the world.

I can see by your bio that you have LOADS of interests in life. We share at least one or two, the stargazing bit, and I guess also books (you being librarian).
You know what I did when I turned 30 and started to get desperate? I went to all the astronomy events I could find, and joined every book circle in my area. And I met people! And after a while I even made great friends .
Another hobby of mine are computers. Through a new acquaintance in my astronomy club, I came in contact with a boy who was supposed to help me with my pc. Well, to make a short story even shorter we are now happily married and have a child together...so you never know !

You know, hurting physically and mentally is something that follows you your entire life. Everybody hurts more or less all the time. People who don't have AS, but who have lost a child. People with good health, a big family and loads of money, but who is abusing drugs. Older people with a spouse that is just awful and 10 children who do not call them. People with a wonderful family life, but so broke and depressed that they can't bare facing another day.

I'm not telling you this to depress you even more (but this was terrible! ) And I am certainly not telling you to get a grip and stop sobbing about your problems! Not at all, Johnny.
I just want to remind you to hold on, stay on top of it. I want to say that life if hard at times to everybody (sometimes too hard) but you never know what will happen next. You can not lose hope just because you've had bad luck with love so far. And even if you really should be left alone your entire life - it's not the end of the world.

You can not prevent life from beating you, but you can decide not to be broken by it. I think that a good looking (if you didn't fake the pic... ) and undoubtly smart fellow like you should momentarily turn into The Incredible Hulk, turn green, and rip apart this mind chewing lonelyness, snap out of it and act decisively and sytematic to fight your problem. At least fight the problems you can solve...like LINCinNYC said, if you should end up with a can - be active. Surf the whole web, go to every shop in Alabama, but get the cool one!

Ops, got a bit carried away here.... This might very well be the longest post in kickas' history...sorry!

Bye bye from a green
Jade

He he, I just re-read my post, and realized it make me look like some kind of agressive Wonder Woman...
But let me tell you the truth: I am an overweight italian immigrant with AS, choked full of anxieties and phobias, and also a certified computer, science and astronomy geek.
If I could make it honey, I'm sure you will too!!

hugs,
Jade

Hi Johnny,
Firstly, I want to send you HUGE APPLAUSE for being so direct and honest, right down to the bone, you HIT IT!!! I am full of admiration for writing what a lot of singles have thought at times, but feel they have to cover up and be all positive and smiley and supportive and be 'the good single friend!' I am exactly where you are, including the RAGE, about being single and my Mom, who is mostly pretty supportive, is in her 70's now and is very healthy, she sometimes finds my AS a bother, as she is very active and wants to do things all the time and gets annoyed with me when I can't. Things got so tense between us (for a long time she wouldn't accept that I was a s ill as I was) that I realized I had to find support in another way and just do 'fun' things with her. So I've moved and am now attempting to build a new life. The single thing is hitting me really hard, and my friends are all falling in love and gushing and I'm having a really hard time coping. I too am afraid for the future and find myself alone a lot. So thanks for writing with such force a lot of things that I am going through, but didn't have the guts to talk about. You're awesome!!!! Look at the responses that you got!!!!!! I think just being so direct about it is a huge start for you Johnny! I've had to go into therapy about this single thing, and trying to face AS alone (I had a lot of male attention before I got AS, and then I got such a severe case of it..NADA..obviously I wasn't meeting cool people with any depth..just shallow types who only go for the image..and when my image changed they just turned away.grrrrrrrrr.) In therapy, i have to let it rip about how angry I am about all the losses around partners and I actually feel a teeny bit better, but it's going to take a while. So reading your post the tears just streamed down my face and I felt so grateful to you. And I feel so grateful for all the people who responded in so many ways..those people were helping me too without knowing it. Clearly you are not alone in this single pain and just the sheer courage to put a cool spin on an awful thing, the way Linc suggests..you're a sweetie-pie Linc..thanks for the support around the reject notion..I guess I feel pretty rejected by men right now and you comments made me smile from ear to ear......it was all so inspiring. The couple made some good points too...that sometimes partners can be awfula bout AS and do some pretty dastardly things that can make life worse..rather than better. Another thing that I think your dealing with is societies bul-[####] little head-game brain-washing that only a partner will be there for us, heal our lonliness and help us when we need help. I've found we are so inundated with this kind of crap that people have bought it and DO only look out for their partners and families and have friends for entertainment! It's AWFUL!!!!!And puts soooo much pressure on finding a partner and if we can't find one then we end up alone. WELL I"M FIGHTING THAT ONE BIG TIME!!!!! I'm creating a new circle of friends as we speak and I'm being very honest about my needs and that I NEED HELP SOMETIMES!!!!!!!!!!! and I am not just a party favour. So as a result the real friends are stickin' around and the others just take off. It's going pretty well actually, but I have to still fight the illusion daily that a partner is the answer and that I would be all better if I had one...when the couples with AS say, at least I have my hubby..kids..etc to hold onto..I wouldn't make it without them...I can feel very very lonely and desperate..but now i can think about the awesome people's responses on this post and it gives me a little edge to fight the despair with. Especially the single's folks cool attitudes. Hey maybe we should start a singles forum on this site..so we can rant and rave and cry together and try to buck each other up. Couples of course would be allowed to write in when partners are NOT being supportive..so they could get in on the ranting too. Now that would be proactive!!!!!!!!!!!!!!!!!!! Anyway, I hope this whole thread has helped you Johnny, and as I say, your honesty and willingness to share should start to shift some things for you>>>>HERE"S HOPIN""""""""!!!!!!!! and at the least know that you have helped a lot of us out here. Feel free to PM me anytime if I can be of any assistance!!!!
Yours, sincerely PISSED OFF and TERRIFIED..but WORKING my way out of it,
Liz