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Joined: Jul 2001
Posts: 1,426
Silver_AS_Kicker
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OP
Silver_AS_Kicker
Joined: Jul 2001
Posts: 1,426 |
I know it, I've been in a really foul mood for the past few months. I've been angry and ill-tempered with friends, both online and off. I'm sorry, but I'm just afraid that all this physical pain is starting to really get the best of me mentally. I'm so afraid of being unable to do things for myself in the future. For those who right now are saying 'I feel the same way,' I just want to add this. It makes facing the future (already iffy at best because of AS) so much more daunting a task when you know you will be as utterly alone as I know I will be. I have had such a horrible record with romance that I have forsaken it now and forever, period, end of story. So there WILL NOT be a Mrs. PIDA to help me out. My rock is and has been my Mother, but she turned 70 this year... really makes me stop and think how soon I could be facing this aloneness. She's pretty much it. When she is gone I will have nobody, NOBODY. Then I have days like yesterday, when I was trying to just do normal work that I used to take for granted. I was trying to install a new starter on my truck, and the pain was so unbearable that it took me six hours to do what would normally maybe take 45 minutes. What happens when the pain is so unbearable that I can't do even easier tasks, like fix something to eat or even drive... and I'm ALONE... will I just starve? Maybe you're saying I shouldn't be so pessimistic, and maybe I shouldn't, but I can't help it. I don't want to end up in a nursing home when I'm 45 or 50... and I don't intend to. I will terminate this so called life before that ever happens. So please forgive me for being hateful or rude or whatever, but I do have a lot on my mind right now, and very little of it is good. Johnny 
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Joined: Sep 2002
Posts: 45
New_Member
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New_Member
Joined: Sep 2002
Posts: 45 |
well lets see how we can maybe get you painindaas to smile !!! some days it is very difficult to want to go on, but you must realize that you are here for a reason , you may have touched someones life somehow maybe just a random smile to a stranger as they pass you by on the street! i am sure your mom is so very grateful for you ,,,MOMS ROCK! if you are religious at all , kneel down and talk to the Lord, he is waiting for you his son to ask for his help, and ask for courage to face each day and to find the beauty and joy in your life! i also have been quite down recently if it would help i could share my hardships and then you would feel like you are not alone so much???? but then everyone here could do the same!! i try to stay positive so i don't get consumed in bad thoughts about things pain/etc, i always try to think of someone else who has it worse than i ! I have a home over my head and food in my belly and mostly in this sometimes ugly world i like to see the beauty! this is all easier said than done, but just know that you will be ok! hope i didn't "preach" to much or ramble to much, i hate to see any one hurt inside! be good/share a smile and mostly NEVERGIVEUP! cheryl
share a smile!
share a smile! and never give up
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Joined: Sep 2002
Posts: 266
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
Joined: Sep 2002
Posts: 266 |
Johnny..
We can hear the pain in your post.. I am also dealing with this awful pain and trying to maintain some kind of normalcy..but I am struggling, too.
For me, my source of strength and power comes from knowing God.. I don't know your religious beliefs.. but science has proved that even when someone doesn't have a religious affiliation.. that when they are prayed for... their health improves.
Please allow me to pray for you because I sense such desperation from what you have written...
God, our Father, we come to you not knowing the future or what it holds, but we know that You hold our future.. We can be assured that You are in the process of working it out for our good. We pray for Johnny, that you would intercede on his behalf. Lord, you know him completely and you love him.. He is your child and we ask that you would bring healing to his body, in accordance with your will. Lord, we also ask for your special mercy, your comfort, and your abiding peace to overflow in his life. Lord, I pray for his family to find uncommon strength in you during these difficult times. I pray that you draw him close to your side, hide him under your wing and show him tender love and care. Help those of us, who are his friends, to be sensitive to his needs and to provide support in the days to come. Thank you for being so good to us, even in the midst of the storms of life. We pray that you will help us keep our eyes on you and not the angry waves around us. We know that one day, You will bring us into the harbor, safe and sound. Thank you Father, for what you are going to accomplish in the days ahead. We will be careful to give you the praise and honor for it all.. In the name of Jesus we pray, Amen.
Please feel free to PM me anytime.. I'm a neighbor over in Georgia...
Peace, Love and Joy Denise
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Joined: May 2002
Posts: 314
Fourth_Degree_AS_Kicker
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Fourth_Degree_AS_Kicker
Joined: May 2002
Posts: 314 |
Johnny,
I am sorry you have fallen on hard times. We, all or will go through the tough times you are experencing now. I have had to also give up a lot and I can no longer do things in a flash. If it where not for God standing by my side it would be very diffcult. I know I will be O.K. but I do worry for you. Take some deep breaths and turn to Him for your stength. You will then find your way and things will still be hard at times but you will find the direction you need. Take care and PM any time you like.
Rickey
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Joined: Apr 2002
Posts: 110
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Apr 2002
Posts: 110 |
Johnny, I don't really know you but I can begin to relate to your situation. I too was in a similar situation in 1994. I had to quit work because of AS, I had been divorced for 10 years and was very discouraged about any romance due to not only my disease but just the way my life had been going in general. I was a very angry person. I use to joke, saying the only way I would ever marry again is if the woman was a Christian with kids. I didn't like Christians or women with kids. I only cared about me and what my needs were. Little did I know what my future had in store for me. I had tried everything I could think of, alcohol, drugs, crime, you name it. Nothing worked. But at the prodding of my cousin Don, (who was my partner in crime), dared me to go to church. I was at the end of my rope and said what the heck. You guessed it. A half year later not only was I a Christian, but happily married to a beautiful woman with kids. Two to be exact. I 'm not trying to tell you what to do Johnny, but I just want to say, that a relationship with the Lord Jesus works. Not only do I now have the peace I never had, but I have a promise of eternal life in heaven. I have a great family, am involved in the Christian Motorcycle Asso. and am doing great with many new friends. No problem or disease is too big for Him. If you have tried everything and nothing works anymore, just give it a chance. If you have any questions, please feel free to e-mail me at windel@ecis.com. The prayer from Denise hit it on the head. Good luck in your future. You are in my prayers. Painman.
Don't Give Up, Ever.
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Joined: Sep 2001
Posts: 3,413 Likes: 1
Imperial_AS_Kicker
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Imperial_AS_Kicker
Joined: Sep 2001
Posts: 3,413 Likes: 1 |
Johnny!!
Hold up there buddy!! I don't think your future includes being spoon-fed in a wheelchair in some decrepit nursing home run by the nurse from "One Flew Over the Cuckoo's Nest"!! I know I too am A) not married or in a relationship, B) don't see one coming anytime soon, C) worry about disability, pain, becoming immobile....but although we can imagine our future, we don't know it, we can only plan for it. And yes, with AS some things in life will change and already have....I may never ski again, for example, or charge through western forests on horseback. And maybe I'll still be alone in the sense of no woman in my life five years from now.....but man!!! Five years??? So much can happen!!! Yes, I could need a cane to help me walk, or maybe the NSD and new drugs will have me hiking up mountains....but if I need that cane, it's gonna be sweet!! Silver and wood, maybe turqoise with some Tolkien runes, and a secret compartment...yeah, baby!! See, there's always an upside, and you're in a moment....Bono sang on U2's recent album, "it's just a moment, this time will pass"....and your's will too, Johnny!! Man, I just saw an infomercial the other night for these high tech electric wheelchairs for seniors...one that my dad may need in upcoming years....if I had to, I'd get one, only find one that rivaled the Mach 5 and could go off-road!! Don't think they make them yet, but I could suggest it to the company!! See, never assume what you're future will hold when you're in a moment of major AS pain while trying to install a new starter in your truck....you're mom is your rock right now, and yes, someday she'll be gone, but that does not leave you helpless, for you are a competant individual. Here's a quick story-- my dad just lost his uncle Fred, age 95. Fred's son, my dad's cousin Phillip, lived with Fred his whole life....Phillip is in his sixties, having never married....worked for the phone company, had AS but is not bent over, despite having to eat 20 Advil a day for years....now, Phillip is George McFly, the dad from "Back to the Future" in a major way....and yet, around the time that Fred was getting ill and passing on, Phillip meets a woman, and now they are seeing each other steadily, and may live together or marry....so, you never know how things will change!! You could meet someone anytime now who could change your life, so just hang in there in those moments of doubt and pain!!! Peace Linc
Linc O'Brien
Linc O'Brien
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Joined: Sep 2002
Posts: 16
New_Member
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New_Member
Joined: Sep 2002
Posts: 16 |
Hi Johnny I am very sorry to hear what you are going though at the moment. When I sit back and take stock at everyone elses condition on this site I can only think how lucky I am, in that, I don't seem to be as bad as most people. Yes I suffer pain on a daily basis, there were things I could do a few years ago which I can't do now but what I have discovered is, life must go on. I am 45 years of age and have been in the police service for the last 27 years, albeit the last 3 years have been sitting in a office behind a computer but that is my purpose in life. In another 3 years when I retire, I am going to have to have a serious re-think about my life, I won't be able to do a manual job and am I going to get an understanding employer who will let me get up and strectch and move about whenever I stiffen up behind the desk, probably not. So what do you do? Find something you can do and give yourself that purpose in life. Johnny all I can say at the moment is 'DON'T LET IT GRIND YOU DOWN' Get that purpose in life and good luck. Ken. 
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Joined: Jul 2001
Posts: 4,728
Supreme_AS_Kicker
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Supreme_AS_Kicker
Joined: Jul 2001
Posts: 4,728 |
Linc - you both Rock and roll! " ...but if I need that cane, it's gonna be sweet!! Silver and wood, maybe turqoise with some Tolkien runes, and a secret compartment...yeah, baby!!" That is SUCH a good positive attitude! Today (yes - this was today) I saw an older couple making their way through a housing estate. So here's privilaged me driving through on the way to an afternoon's golf, and there's underpriviladged them - him walking, her in a motorised wheelchair. What was so wonderful about the sight of them is that the woman suddenly decided - wheelchair bound as she may be - that she was going to enjoy her journey. Suddenly she decided to go off-road and onto the grass play-area next to the pavement/sidewalk. It was such a great sight - she 'opened the throttle', and went spinning off - did a couple of circles laughing all the way and rejoined her husband (I'm assuming) back on the pavement. The husband stroked her hair as she went by, joining in with the laughs. It so made my day! Being pessermistic isn't so bad (avoids disappointment for one) - but if you can avoid defetism and continue your fight regardless, then hopefully you can also continue to enjoy the little things in life - the things that really make live worth living. Like a silver and wood turquiose cane for example.....   Loz

if your neck won't stretch to see the sky, be sure to stop and smell the flowers
Loz - Life isn't always a matter of holding good cards, but sometimes of playing a poor hand well.
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Joined: Jul 2001
Posts: 1,426
Silver_AS_Kicker
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OP
Silver_AS_Kicker
Joined: Jul 2001
Posts: 1,426 |
Ah yes, but she did have someone there beside her. It is so much easier to be optimistic when you have someone by your side. A wife, a son or daughter, a brother or sister. The point is, as one of my favorite singers said "Everyone needs a hand to hold on to" and I really need that hand at times like these... but I don't have one. 
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Joined: Jul 2001
Posts: 1,426
Silver_AS_Kicker
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OP
Silver_AS_Kicker
Joined: Jul 2001
Posts: 1,426 |
This is not meant to be mean or angry or anything negative, but please if you are married or have children or even have a great and supportive family, please don't tell me you know how I feel. That is not what this post was about, I'm not looking for sympathy or reviling in self-pity. I was trying to say I was sorry if I have not been a happy kicker lately and trying to explain why. My mom hitting 70 has really belted me big time. Anyway, everyone I know (friends, family, co-workers) has either a spouse and/or children. If you ain't married in bible-belt, Dixie by the time you're 25 you're either gonna have to take the left-overs or the rejects one. That may be a little harsh, but the point is, all these people I know always say "oh, I know how you feel about being alone." They're also the ones who are always saying "oh I know how arthritis hurts," when the fact is, they do not have a clue. And unless you are as alone as I feel right now, you do not have a clue how I feel. I love you all, and don't want to make anyone mad, but this is how I feel about this subject. 
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