Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Complicated times

Good morning all:) Life is really becoming complicated lately. I am beginning to think if you have AS, you need a lawyer on retainer I am loosing my job Jan 1 and life as I know it ,is going to change drastically . I am 58 and have had AS for over 30 years . I have always tried to stay in shape but this disease and old age does have a way of kicking a persons butt. Like all of you, I have done the old Rocky Balboa routine and just said to myself . “No Pain , No Pain “ but sooner or later you just cant bs yourself anymore and I am at that stage. From the outside I look pretty much normal except for a limp . I finally got all kinds of MRI’S last year and my family doctor told me I look like a Greek tragedy on the inside. Frozen SI Joints , lower spine frozen , bulging disks , ribs frozen to the spine , neck fusion well, anyway you get the picture . She immediately told me to go for SSD l , well, I watched way too many Rocky movies to do that . I did consult a SSD lawyer that works with my daughter through the social security office she works at . No problemo, so at least I have most of the paper work done. This last summer I was at a Hazmat drill and wrestled with a 400 pound decon tent and really did some extra damage to the back. So I have been going for decompression therapy for the last three months. I phoned the lawyer and asked if I should try for workmen’s comp to run out my career after knowing I was leaving at the end of the year. He stated that pre-existing conditions would have me hung out on appeals forever . So it will be unemployment and then probably SSD when that runs out. This is not how I planned life to be .
So for right now, I am starting to work out again and I keep praying that my wife and I make it through without ending up in subsidized housing eating macaroni and cheese.
I am pretty spiritual and know at almost age 60, I am least ¾ ‘s of the way home. I will say, that overall I have had a blessed life considering the obstacles. We have three absolutely beautiful grandchildren and more friends than we can count. I believe that relationships are our most valued gifts and in the end I will get to run with them all.. To finish up with, good Lord I am getting gabby:) I will fast forward the part where they tell Rocky “ no pain “ but watch the part where they tell him “ don’t go down “
Peace and God Bless ,
Tim

Tim,
Hi. I can understand some of your thoughts. I am 60, been declared as qualified for disability, but what I would get doe snot even cover my house payment.
I do plan ahead, Lord will'en to be faithful and enjoy the family and friends I have. Taking time each day for Spiritual inventory is my ticket for life.
It is not easier, it had not gotten better, but we can be stronger, we can develope character virtues that see us through to the over side!
Jude 21
keep yourselves in God's love as you wait for the mercy of our Lord ... to bring you to eternal life.

Lon , thanks for the reply I saw in one of your posts that you are a biker ! I used to ride bikes and averaged around 1600 miles a year. Last year I spent way too much time working on a tribute motorcycle and going to motorcycle shows. I have a recumbent bike in the basement and plan to ride that lot this winter and then in the spring get on my old man Hybrid bike and cruise away. For some reason I cant walk well but I can ride a bicycle.I will admit I am more of a flatlander now
I have been in prison ministry for around 20 years and will probably spend some time at a rehab/ prison release program that I frequent a lot. There are some rumors that I could get in there on a part time basis which will be fine when I get on SSD.
I have thoughts on the end also. I hope to roar up to the pearly gates on my Harley , slide to a stop . Go in and give Jesus a hugs and say " Nice ride "
Peace and God Bless , Tim

Tim,
Hi. I have riden a few miles on both Suzukie and the peddle kind. We have a lot of ice now, so I am inside for exercise. I have a treadmil that I use everyd day as well as step up and stretching. I know what you mean about walking- some days my back just gets tighter and tigher; but most of the time I can make myself go a few miles on a bicycle.
One of the most rewarding things I have ever done is the jail ministry here in Gillette. When the felons are released from prision some can come here for the rest of thier time at a half way house of sorts VOA. Some weeks I spend about 20 hours working with these guys... a few have become my friends.
I have mixed thoughts about our prision system..
Nice to chat, onward / upward!!

Sir Tim,

I see my future in you and I am scared, scared to the point that I believe I should just stay single. (I am 28).

I hope things get better for you, I don't know how but I just pray they do.

Ankush

Hi Ankush why should you stay single. I understand were Tim is coming from Im 55 and been disabled about 14 years I have a good life a lot of pain but a lot of happiness. I have a lovely wife who I only married 4 years ago lovely children and grand children. Life is what you want to make it having AS dosent mean life ends embrace it love your self and your partner and family you still have a lot to offer at 28 you have years of love and happiness you can share.
Kevin

Tim,
I can not say i feel your pain, as must have had more than what i have been subjected to. The great news athough is you are 3/4th way home. They took out the physical pleasure for you but gave you spiritual healing.
I wish i could fast track my sprirtual path and get closer to home.
Eating cheap marcorni and cheese, yup can dbe delightful for anyone's taste buds, but i guess a7 course meal alone, or withunhappy family cant be good either.

well, we can look at all the things that could have been worse, it still doesnt discount your pain and ordeal. Acceptance, is, i guess a virtue. Enjoy what we have!

Hey ANKUSH.. buddy you gotta get out of doom and gloom! I am sure you have some one out there who would lovingly see you as a soulmate. (Well who's the girl in picture,eh?)
I tried to get out of my relationship for about 6 months, after getting diagnosed, but it didnt work. My partner has helped me immensly, she believes that nothing too bad can happen. Even if I get down to the worst shape, atleast we have our love to keep smiling. I guess 4 lines on that are not doing justice but hope you gt the point.

love, ansh

You know Kevin, My girlfriend's mom knows about my AS and was warning her of the consequences of life with AS. My girlfriend knows its going to be tough but doesn't want to be told.

When I see these questions raised, I realise that if things get worse for me in future, I do not want somebody to say later, 'look what I told you'. I can carry my weight but not somebody else's. I have to give it a lot of thought. But all that for another post.

Ankush

Hey Tim! Good Rocky references! I love those movies! Rocky is cool! I always liked Ivan Drago too! Just tell yourself "I will not be defeated!"

Craig

Hey Ankush,

They keep rolling out new meds for our disease at a quick pace. Another poster said their doctor told them it is an exciting time to have this disease (I know ) because so much research is being done to help us.

Each relationship and life for that matter has its own "for better or for worse." I am so glad to have my husband. I couldn't do this by myself. It's not the way I planned my life to be, but it has definitely brought me closer to God as I talk with him on a more regular, sincere basis. Also, I believe the primary purpose for our lives here on Earth is to create meaningful lasting relationships to carry on in the hereafter. I don't believe God would rather have you suffer alone. This life is only a test, thankfully. We'll all be healthy in the next one!!

Take Care,
Donette