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

I hate to keep running to you guys every time I have a problem. I really don't want to wear out my welcome here. You are all so fabulous. Please forgive me for this:

I have been having what I feel is the worst flare of my life over the past week. There are times when I can just barely make it out of bed and even then, sometimes Sue has to help me do that. I have always been a very independant person and the thought of having someone to help me even get out of bed is repulsive to me.
I know I have had flares in the past before I realized even what a "flare" was or before I know I had AS. But, it seems that since the onset of my iritis and the AS dx that things have speeded up. I still have good days but it seems the bad ones are worse and last longer. This latest one really has had me down in the dumps. When I first started on the MTX, it seemed to be the "wonder drug" I had needed, but now it barely seems to have any effect. Of course, because of the liver function, I'm down to only 15mg and that is probably the reason.
Being that I've been out of work for a couple of months and now trying to get back into the work force, I've had a lot of time to think. I am scared to death that at some point in the not-so-distant future that I may not be able to be the provider to my family that I need/want to be. I know I gave up a very good paying career because of stress, but I know I can not get the kind of job that paid me what I made before. I know I'll have to take a job that pays me substantially less and the benefits will probably not be near as good as what we are used to. I am gravely afraid that I will eventually become a physical, emotional & physical burden to my family. That is what is really gnawing at me most of the time now. I know they will stand beside me and support me, but how can I not let it get the best of me?? Sue has been fantastic through all of my health & emotional issues, but how much can she stand as well??
Anyway, I guess I've rambled enough now. I thought that maybe if I got it off my chest I'd feel better and maybe even get a wink or two tonite. Bless you all for being there.

Glenn

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

Gee Glenn

I guess we're both up late at night, worrying.
Thankyou for answering my post - I replied to you.
I am so sorry to hear that you are having such a rough time. I completely understand your worrying about the future. I do too. I wonder how much longer I can keep doing the work that I do and I don't really have skills to make as much money at anything else. ( I don't meen I make a lot now but It's reasonable.)
I don't have answers for you except that I don't think we are doing ourselves any favours by worrying ourselves sicker about it. One thing I try to do is to think about people who are worse off than we will ever be. I saw a fellow in town today - about my age - must have had an accident and appears to be a Quadrapalegic(can't spell) now. When I see things like that - I count my blessings. That's about the best solution I've come up with so far. I'm sure others will give better advice.
Before anyone else says it, I will - why apologize for asking about your concerns? That's exactly what we're all here for.
It's late - must go off to bed - talk to you later.

Keep your chin up Glenn.

Maggie

For the past five years (until last October) I was in an awful flare, went through courses of treatment on Celebrex (worked for a while then nada, zip, except for soaring blood pressure, even if the stuff was working I would have had to quit it), sulfasalazine, plaquenil, and of course MTX. I was ready to throw in the towel or head for the nearest bridge -- not that I had a chance of being able to climb over the railing - - when my rheumy put me on Arava. Within four weeks I was feeling so much relief, and within six weeks I was getting out of bed like a normal person, able to drive comfortably again, a little achy but nothing like what I was used to. With all the stress I've been under for the past four months (the sudden death of my husband of 27 years, major move, change in life style, etc) I have had symptoms off and on but again, nothing like my life was like pre Arava. Maybe you can talk to your doctor about one of the new disease modifiers? Arava works for me, Enbrel and Remicade for others. I've had this AS thing now for so long I thought mind numbing pain and increasing debility were always going to be a part of my life, and now I rarely have to use my cane, don't have to take any painkillers at all, and some days can completely forget I have AS. The eye inflammation and Sjogrens have also vastly improved. If you want more information on Arava you can PM me and I'll fill you in on side effects, etc.

Cheryl

Dogs believe in long term relationships

Glen,
I hope there is room in your boat, because I feel the same pressures all the time, I worry about retirement! I take for the most part one day at a time, and do the best I can that day. Even if I'm having a bad day, if I make someone smile that was a good day. Like maggie said keep the chin up! Arthur

Dearest Glenn,
This board is the best place to share what you are going thru, of course next to sharing with me. I have found it to be a great support system for both of us.
I know you are worried about finding a job, and I hope I'm not adding to that worry. We will get thru all the ups and downs together. I will always be there for you, so don't feel like you are being a burden to your family. Love you!

Susanne

Glen,
Partner, I know how you feel. I have had some BAD flareups. The flareups affected my hips area and Si joints. I couldnt even eat or sleep. But my man, It's like a STORM, you have to weather it out. Take the pain pills and ride it out. I know about the job it really put a strain on you physical and mentally but you have to keep going. I kept going until I was 50. I just couldnt take it anymore. I then applied for SSDI and received it. It's not much but it helps to pay things. I have to get use to not having the "WANTS" but just the needs. You family will understand that. YOu have to keep saying that it will subside and you will be back to somewhat normal. This is the best sounding board. And we are all behind you. Keep praying to the Lord to help and you will see he will. Good Luck and may the pain subside. Your friend.

Dan

Glenn,

Hang in there partner. I know it is tough now but it will ease up. Sometimes the over and over can just wear you down but you have to keep your spirit up. Its very hard at times to stay postive but we just have to. We will be sending prayers your way. Take care for now.

Rickey

Glenn,
Hey buddy! I am sorry to hear that you are having a rough time. Like everyone has stated "hang in there and keep your chin up". You are so lucky to have such a caring and compassionate wife. I wish I could do something to help you out. I know by talking to Susanne she will stand behind you no matter what. Don't beat yourself up over finding a job that may pay less ect. You did what you felt you needed to do for you and your family when you left that job. I am sure something will turn up. Even if it does pay less would your old job been worth the stress it was causing you and your family? I don't believe so. If you need to talk PM me. I hope you are feeling better soon.
Cara

Sorry to hear about hte flare.

I had about 3 years that I just plain lost out of my life from battling the pain of unbearable flares. NOt that the pain was always there jus that it interfered with my life on and off so often that things were sort of a mess.

I tell you this only so you realize that things get better. My health overall oddly may have been bettter than since I wasn't nearly as fused and on the days where the pain wasn't raging were much better than my normal days now. But somehow with changed mes' and changed routines and maybe familairity with the changing pains I "grew" into the changes ocurring.

The work thing was sooooo depressing and I at that point was not supporting a family. So much of my identity is and was tied into working. The good thing is there are things you can do that you haven't even thought of yet as a new form of earning a living. For now it sounds like fighting the apin is a full time experience and lots of us here know how exhausting that can be on a daily basis. Not that you would ever wishAS on anyone else but it is one of those things that you wish folks who don't understand could walk a mile in your shoes just so the world would know how tough each day of a flare is.

Pulling fo ya' here in NY-NJ.


stevec-they also serve who stand and wait

Sorry to hear about hte flare.

I had about 3 years that I just plain lost out of my life from battling the pain of unbearable flares. NOt that the pain was always there jus that it interfered with my life on and off so often that things were sort of a mess.

I tell you this only so you realize that things get better. My health overall oddly may have been bettter than since I wasn't nearly as fused and on the days where the pain wasn't raging were much better than my normal days now. But somehow with changed mes' and changed routines and maybe familairity with the changing pains I "grew" into the changes ocurring.

The work thing was sooooo depressing and I at that point was not supporting a family. So much of my identity is and was tied into working. The good thing is there are things you can do that you haven't even thought of yet as a new form of earning a living. For now it sounds like fighting the apin is a full time experience and lots of us here know how exhausting that can be on a daily basis. Not that you would ever wishAS on anyone else but it is one of those things that you wish folks who don't understand could walk a mile in your shoes just so the world would know how tough each day of a flare is.

Pulling fo ya' here in NY-NJ.


stevec-they also serve who stand and wait