Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group 5 am. Pain,Pain, Pain

Well it is 5 am and I am once again awake. I just had the usual fight with my husband on why I can't open the back door ,it sticks and on a good day I can't open it, when it sticks forget it. I have been off all meds because of a rash and some very very high liver enzymes. It has been about 4-5 months now. I can't sit or stand or use my hands anymore. My neck is so stiff I can barely turn my head. I am passing kidney stones and the crohns is acting up. My hands hurt so bad I can't lift a coffee cup , put on clothes, or wipe my self. I do it don't get me wrong it is so painful I just sit and cry. I didn't mention that my surgar has been in the 300's ,Yeah diabetic too. I just want to know why my own family can't understand? My son(17) gives me greif because I don't work anymore, I am a nurse , How can you nurse if you can't walk? Some idiot stole my wheel chair from my front yard and my hands hurt to bad to use my cane. My oldest is in med school you would think she would get it NOT, she leaves a mess and expects the house cleaning fairy to make it vanish. I would like to sleep or just sit or maybe just have a light pain day. I don't have the energy to type all the body parts that hurt. How do I make them get it? My husband is getting so insensitive. He is tired of me being sick. I had some independance with the Embrel, now I am a crumpled up mass of pain. I know he is worried about the bills since I can't even work part time any more, but so am I. If I could walk I would work. I want to thank you all for being there I feel so alone until I get to this site. Had to rant. Rose

Sorry you're feeling so horrible, dealing with AS is bad enough without having to cope with insensitive family members! While everyone here knows AS affects not just us but our families also, we are the ones who deal with the ongoing daily grinding pain. I have a great support group in my family but years ago when this thing first started we had some go rounds -- of course that was when the docs kept setting me up for family difficulties by assuring my husband (sometimes out of my hearing) that physically there was nothing wrong with me. Once I finally got a DX the family began to take me seriously and it hasn't been a problem. I'd tell your son you're the grown up and it's not his job or his place to tell you to work or not to work, and by the way how's about he gets a part time job and chips in for the household expenses. Your daughter? If she's in med school she's an adult and if she can't clean up after herself maybe she needs to find her own place. Husbands are a different story, though, that's a toughie, maybe find a quiet moment to just sit down together and talk about it, the worries about finances, your own worries about your health, and see if you can at least get some communication going. If all else fails, just come here and vent to all of us. I am enjoying a spot of remission here with Arava but I have no illusions left, I'm not cured, just presently controlling the symptoms, all of which could start up again at any time, but if I do begin to deteriorate again it's comforting to know that my husband will be there for me, can't imagine facing this beast without his full support and sympathy.

((((HUGS))))

Cheryl

Dogs don't care if the house is messy

Oh Im so sorry about your pain it can be a right pain in the as especially when you cant sleep , cant do anything and a right down andfeeling depressed, cant comfort eat because of your diabetes , which usually goes up at the same time . been there done that and bought the T shirt. Dont do your grown ups son and Daughters work for them they will kick up hell for a couple of weeks but will come round to your way of thinking after a while , and there clothes have gone mouldy where they have left them,dont replace anything either. Husbands are a wee bit different you have to make them think everything thats needed was there idea in the first place. sorry Im preaching again but this place will help you get through the bad times LOL elspeth

Rose, I am so sorry you are going through such a bad time...the pain and suffering is bad enough, but when you have no family support it is really bad. My hubbie has always been suportive of me, but my kids, parents and siblings don't have a clue about how I feel. I have tried talking to them , but it seems ignorance is bliss to them. You are not alone in your fight...you always have us here at KickAS...come and vent anytime....hugs, DC

Dear Rose:

Guess the kidney stones caught my attention. I suffered by manufacturing them at about one large one every two or three months and I don't think that I ever really recovered from the last one. It was several years before I finally got around to listening to the "Dead Doctor's Don't Lie" tape given by a well meaning (albeit slightly insane...and not very credible) friend.

The aggressive supplementation with calcium sure has worked on the stones, even before I got rid of the cause of the AS. I managed to see Dr. Wallach give his latest lecture and slide presentation recently and although I don/'t really like the way he conducts business, it is hard to argue with his medical successes.

I hope for you an easier life in the future,
John

I seem to have go into an annual kidney stone thing - every July to be precise - weird

Rose,
I am very sorry to hear about the deteriorating situation - you would have thought that the shock of seeing you suffering so much would spur your family into action........

Or are you doing too good a job of playing it down and covering it over - perhaps a bigger shock is required?

My thoughts are with you and I do hope that the situation improves rapidly,

Kind regards

Jo

Rose,
Yeah, I know the pain. My hubby finally understood after having someone else talk to him. He couldn't figure out why one day I'd be fine, and not the next. Your hubby needs to be educated. And it is hard when the finances aren't there. Can you get any outside help?? As for the kids, they are old enough to take care of themselves, and clean up after themselves. Although the older they are, the less understanding they are. When one of mine doesn't like something, I just tell them to do it themselves. If their laundry doesn't get done because it's still laying on their floor, I tell them to recycle. I am not the maid, and it is not wrong for kids to pick up after themselves (any age). This should have nothing to do with whether or not mom is able. I'm sorry to hear about the loss of your wheelchair. What kind of an idiot would steal someone's wheelchair anyway?? I can't imagine not having one, I would be housebound without it.

Just come back here as much as you can. You can vent, whine, and complain all you want. We listen and care. I hope things improve for you.

Hugs,

Cindy

Dodie, on the wheelchair thing, check with your local firehouse. We get them donated all the time, even had two hospital beds at one point.

Hang in there, we are supportive of you.

Ian

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Life is like an onion; you peel off one layer at a time and sometimes you weep.
-Carl Sandburg

Sorry about the anguish you are in. As for your family I think sometimes loved ones just get frustrated by their inability to do much for us. Sometimes I figure if they're giving me heck it just means that they think of me as normal. (OF course not mentally normal). When they're real nice I worry.

DOn't know what my point is just an observation. I sure wish you felt better.


stevec-they also serve who stand and wait

Sorry you're having such a rough time.
I'm about in the same boat your in. Have you tried getting disability yet? At least it would help with the finances and maybe your husband would be happy.





Susie