Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Bad flare

Glenn,
I know how you feel and I have some of the same concerns as you. I am a little older and closer to retirement, but I still worry about how long will I be able to provide for my family as I cannot afford to retire.I really would like to work until I am 65. What helps me is my faith in God. I truly believe that whatever we go through in life is ultimately for our best. So I am trying to learn all the lessons that God has for me in dealing with the pain and disability, and I try to look at the big picture to maintain perspective. Keep pushing forward is all that I know to do. I hope that your Rheumy can find something to give you relief.

Harry

glenn..

gee.....having a lingering bad flare will make anyone feel down and helpless. i'm so sorry it's happening to you.

it's perfectly natural to worry about the future and if we'll always be a burden to our loved ones. one thing you must remember..they love you, no matter what. if you can climb mountains or if you can't... you're still glenn, that wonderful person that your wife married and the great guy your son looks up to.

the advice given about riding it out is what i try to remember when i'm suffering. i know we just want the pain to go away this very minute, but unfortunately, it doesn't go away that fast. sometimes i live day-by-day, just waiting for it to pass and when i think it never will and i can't take anymore, it lessens just a bit and that gives me hope that i can hang on till it passes.

PM anytime.

leslie

Hey Glenn,

Sorry to hear you're not feeling well and in the middle of a bad flare. We all know those stink (or another S word) with a capital S.

First off, just thought I'd let you know since I last wrote to you, I've joined you in the iritis club. Started on Saturday, and I'm on the drops now. I'll keep that doctor's name in mind.

Second of all, I echo Cheryl's thoughts about the new TNF disease modifying drugs. I'm on Enbrel instead of Arava, but it has worked wonders for me. I'm not pain free, because of all the structural damage that has occurred, but my overall pain is way, way down, and I haven't had one of those awful all-encompassing, stay in bed and cry flares since I started taking it. I'm not sure what your insurance situation is right now, but if you have decent insurance, AND a primary care doctor or (better yet) a rheumatalogist willing to fight for you, it is possible to get these drugs approved for AS, even though that is not one of their "on label" uses yet. All my doctor had to do was write one letter (strongly worded, mind you) to Aetna explaining how bad I was and how nothing else had worked, and presto, it was approved. I hope there is some way for you to get on one of these drugs.

Now, for the worry and depression part. This sounds so much like me, it was scary. While I have been able to keep working through my AS at a career I love, that doesn't mean I don't worry every day about what would happen if I lost my job. Worse, my wife has had some serious health problems of her own for the last year and a half that have often left me worrying about her and where the money is going to come from if she isn't working--like they have been for so many here, financial woes have been such a big part of this illness. And add on top of all that a stressful marriage situation, busy, busy months at work, and many other things, and I found that I was just constantly worrying about something, which didn't use to be me.

After a couple years of internalizing all this, I finally got smart and asked my doctor for some help, and it come in medicinal form. I finally told me how worried I always was, and how the disease and other stuff was leading to depression, and he prescribed the antidepressant Paxil. I've been on it for about six weeks now, and while I won't say the difference is like night and day, it is very dramatic. I am SO much more relaxed now, so much better at putting my problems in perspective and not letting them wear me down like a 100 lb lead weight on my head. I kind of scoffed at the drug and was sure I wouldn't feel any different, because I thought I was still thinking clearly and having no problems without the meds, but boy was I wrong, After about four weeks, I really started to notice that I was looser, and joking around like I used to. After six weeks now, I realize clearly just how bad I had become. I was constantly snapping at my wife, unable to get enjoyment out of anything, always swearing and worrying about bills. Now, I still worry, but it's a rational form of worrying, and I don't let it overtake every other thought. When a new problem comes along, I approach it from all sides, think of the best solution, and work from there. My wife says that I am more like the man she married now, that I had really become someone else for a while (there's a lot more to that, but we won't go into that here). My parents have noticed the difference too. Most importantly, though, is that I've noticed the difference. I flat out feel happier now, and man, let me tell you, that feels damn good. To sit here and feel good--I can't tell you what a relief that is.

And I've had some unexpected bonuses on the Paxil too. Almost immediately after starting it, I started sleeping GREAT. We're talking going from being lucky if I slept for one whole hour without waking up for one reason or another to sleeping for seven or eight hours without waking even once. That now happens routinely. I got a sleeping pill that same time I got the Paxil, and I haven't even had to take the sleeping pill yet. Plus, maybe it's just because I feel better mentally, which means I have less physical stress, but whatever the reason, I have a lot less pain since strating the Paxil. It's been a very nice, very unexpected side effect.

Is Paxil, or one of the drugs like it, for you? I sure can't answer that, but I wanted you, and others here, to hear a success story that came from taking this drug. While some might still feel a social stigma attached to taking a depression drug, I would have to say that, for the most part, since the spread of the Prozac nation, that stigma is really limited compared to what it used to be. Don't make the same mistake I did--don't be too proud to ask for a drug like this if you think it will help. Don't think that you'll be a weaker person for having taken an antidepressant. Anyone who thinks that of you is the one who has the real problem.

Finally, one last side effect of the Paxil seems to be this--I prattle on even more than I did before! I'm sure everyone hear gets tired of reading my epic-length posts and mutters "enough already" at least by the half-way point, but I just can't seem to help it. I'm a writer and editor by profession anyhow, but now the words really seem to flow out of me! Must....stop....typing ....NOW!

Good luck Glenn,

Wolverinefan
Brad

Brad
Re

In reply to:

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Finally, one last side effect of the Paxil seems to be this--I prattle on even more than I did before! I'm sure everyone hear gets tired of reading my epic-length posts and mutters "enough already" at least by the half-way point, but I just can't seem to help it. I'm a writer and editor by profession anyhow, but now the words really seem to flow out of me! Must....stop....typing ....NOW!

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Regardless of whether I agree or disagree with your prattling I am always glad to read anyones "prattle" here when they tell a cogent story... Keep on prattling on...
Mike

Hey Glenn,

I understand your pain. Been there. All I can say, is I'll keep you in my prayers.

Dude, I hear ya-
I totally worry about my future employment....my job now involves alot of sitting in front of a computer, and sometimes I can't get out of my chair.....but I love what I'm involved with, so I get on the subway everyday and lurch around....

I don't have a family to support, AS has helped trash several relationships with women, and it factors into my decisions on dating, marriage, and raising kids....don't know if I can do it....I certainly need more money first, and my job aint' about getting rich...

But family members who support you are awesome, and if they love you for YOU, then they'll fight your fight as well as their own....

Hang in there man!!

Peace
Linc

Linc O'Brien

Maggie,
Thanks for you reply. Actually I'm feeling pretty good today. Not totally out of my flare, but well on the way.
I know what you mean by seeing someone less fortunate. I really did think about people I had seen when I was hurting so bad. At the time it made me wonder if I'd be in the same boat at some point. But I hate wallowing in self-pity and wouldn't allow myself to dwell on it.
Anyway, thanks for the reply.
Take care,

Glenn

What makes the hottentots so hot? What puts the ape in apricot? Whadda they got that I ain't got?....

Cheryl,
Thanks for your reply & concern. I have talked to my Rheumy about Arava. At that time he didn't seem to think it would do much good for me. He still wants me to be on Remicade or Enbrel, but Blue Cross is balking at paying for Remicade and of course as we all know, Enbrel is in very short supply. So in the mean time, I just continue on my mix of MTX & Vioxx and Darvocet for the pain.
I hope that his letter to Blue Cross will get them to finally approve me, but who knows? I have started feeling better, however now that my back is feeling better, my left shoulder has started hurting as if I'd lifted a huge weight. I hope that goes away soon.
Thanks again.

Glenn

What makes the hottentots so hot? What puts the ape in apricot? Whadda they got that I ain't got?....

Cara,
Thanks for you reply and concern. I really appreciate it. It has gotten better today. The last few days, since Thursday seemed to have taken forever. It was easily the worst flareup I've ever had. You are right tho. Through it all, Sue was right there beside me asking what she could do to help. She is fantastic and I don't know how to show my appreciation to her enough except to just keep telling her thank you and I love you.
As for the job situation, you are right. Even tho my last job was a very good paying job, the stress was absolutely unbearable! It seemed as if everything was my fault with my customers and I couldn't tell them that my company was having financial problems and we could'nt meet their due dates. I had to make up lies to them and I can't stand that.
I applied today at D.E. McNabb Carpet Co. just 2 miles away. They are looking for a "Installation Coordinator" and that sounded like something I might like. Not sure what it pays, but its a white shirt and tie job and I would get to work with people. As long as I don't have to be false to people, I love that. I have an interview set up for Wednesday at 9 A.M. so wish me luck. I have a very good resume and it pretty well fit with what they are looking for.
Thanks again for being a friend. You don't know how much that means to me.

Glenn

What makes the hottentots so hot? What puts the ape in apricot? Whadda they got that I ain't got?....