Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Friends , i'm still around and still have AS !

Hi Friends, long time on see.
I'm sorry for not being around much I got no excuses I just don’t go online much anymore. Mainly because I have been off work for the last 10 months ! So since I haven’t been at the office and we only have dial up at home, I never went online!. But anyway I’m back to work again So I’ll be here more often now. .
It great to see most everyone is still here, I’m sorry to read most haven’t had much change in our conditions and then there’s those of you that have had personal family issues and health problems to deal with on top of their AS , My love and prayers goes out to all of you who are dealing with these things.
Well like I said I’ve been off work for nearly 10 months, just started back three weeks ago and getting back into it slowly. I learned the other week that I may be able to started remicade in the near future; I think I’m happy about it! I’m not sure There’s so many unanswered question for me about these "new" drugs. On one hand I want to try it to see if I can be pain free! But on the other hand I’m afraid of the "unknown" effects!!
If everything comes together and my insurances well pay for the whole cost, I’ll most likely try it, "I think" .
Hmm what else, well oh ya I’m now fully addicted to narcotics! I’ve been on them since last spring. Until four weeks ago I was taken 90mg of hydro morph cotton 3 times a day ! Now, after four very long weeks of withdraw and long days and nights I’m down to 24mg 2 times a day ! I’m determined to get off these darn things!. But its now at the level where I’m in a great deal of pain all day, everyday and I’m not sure how or if I can go any lower ! . I would like to be off them totally when I start remicad but that may not be possible.
The Night sweats are unbearable! I wake up soaked every night, its an wonder my wife even bothers coming to bed at night ! Oh and then there’s my wife ! She's still here, still with me, I cant believe she's put up with me all these years. Half the time I cant do anything around the house but I never hear her complain not once. I'm so lucky.

So anyway that’s enough complaining , really when I look around I’m not that bad off, oh sure there’s tons of things I cant do any more but there are so many others out there that have it much worse then I do. Even with my problems I’m still truly blessed. I guess that’s my prayer for all of you here , I pray that you can find or see the things in your life that are special to you and help make the fight with AS worth fighting . Take care my friends and remember

Keep on Kicking


Martin

hey macky! welcome back!

i'm a newly diagnosed member.

narcotics are tricky. when i was on them (only for 2 months), i felt better, but still couldn't do anything... just slow and wanted to sleep all the time. kind of a bad cycle because i also didn't want to move, which made things more painful... plus i was moodswinging a lot. good luck with tapering!

Congrats on reentering work :] I never had that large of a gap (and hope I never do). I think the longest is about 5 months for me.

I was just wondering, after a long pd of time, do employers ask about the gap? What did you tell them?
You don't have to answer that if it seems personal... but that happened to be something i was wondering.


Also, if anyone else reads this, and has had a long gap in employment... you are welcome to answer as well!

All in all.. welcome back!-J

Hi Martin,

Good to hear from you. I am glad you are going to get to go back to work. I haven't gotten to work since '87 (whoa I am old!) and I still miss it every day.

I went through the getting off the MSContin. It is NOT fun. I take it sometimes now but I don't let myself take it long enough to get dependent on it. I know I am dependent on the Lortabs but that's ok. I can't make it without pain relief. Like my dr said when I wanted to come off the Morphine, I wouldn't ask to come off my bp meds or my thyroid meds, etc. Why should pain meds be any different when you have to have them to be able to function.

I hope the Remicade works for you. I backed out on taking it last fall because of my Lupus and some Neuro symptoms I was having. I sometimes wish I hadn't and other times I am glad I did.

Have a good weekend.

Blessings,
Possi

Hi Martin,

It is so good to hear from you!

I am so glad it looks like you will be getting on medication and you are back at work.

As far as your wife goes, SHE LOVES YOU you big goober...lol that is where those vows in sickness and health come in, I realize not enough people take them seriously anymore but I am so glad that you have a wonderful support in her.

So many people here do NOT have the support system they need and that just makes things 100% worse.

The only gripe I have with you is you might just "try" a little harder to check in more often so we know how you are doing especially after you start your meds..

Take care,

Lisa

Macky, I'm so glad to hear from you, although I do wish you were in better shape and in happier circumstances.

I can't reply as fully as I'd like as it's stupidly busy at work and I have to leave early because my water heater busted while I was in Mexico last week and flooded my basement, so Direct Energy can get in and replace it.

Take care of you and have faith that Remicade will do wonders for you. The side effects can be drastic, but in everyone and the percentage is so small that the likelihood of being hit by a mack truck is bigger.

Many warm hugs,

Macky, glad to see your face in here again. I've been a little scarce posting wise myself due to a bunch of stuff, but poke my head in a lot to keep up on things.

Dial-up, ugh, I couldn't imagine, I was just laid up for a couple of weeks and was using my wireless card, and it was slower than my wired connection, enough to drive me batty.

Ian

Hi Macky

Glad to see you back. Wish you were feeling better and such.
I am sorry that I can't give a longer reply but I still can't stay too long in one position and I can feel the discomfort starting so I have to get up and move around.

Hi Martin,

Good to see you posting again! Everytime I see you post after a small absense I always think of the Bobby Darin song, Mack the Knife and recall the line, "ol Macky is back in town".

Good to hear you are back at work, hopefully that means better days are ahead for you. Sounds like you caught a real keeper of a wife... but I bet she thinks the same as well.

Best wishes,

Tim