Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group My mother thinks if I get a job...........

yeah,,,,,A year of therapy later...My parents and my current
husband think I couldn't possible feel pain? I don't think anyone that hasn't been there can understand though. This site may be one of the places I don't feel alone..I will tell you one thing though, since I've been back to work I notice sometimes my brain is so engaged in my job that I can override it to an extent. Didn't you ever hear of certain individuals that spend decades at a job that is adrenalin high after adrenaline high and then one day they retire and there body just gives up. That old brain is one heck of a electric box!

do it tell her the same thing she is telling you and tellher she needs to exerccise to keeps the knees from hurting she cant baby them my knees are so bad they need replacing and are buckleling but i still use them and my hips are really bad so tell her to get moving and get a job and if she complains about her knees just tell her that shes faking it......oak

Hey, Oak,
Do you have any rent controlled apartments where you live? My brother-in-law is disabled, and he lives in an apartment where is rent is controlled and subsidized. You might check into something like that, if you decide that you need to move.

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I will tell you one thing though, since I've been back to work I notice sometimes my brain is so engaged in my job that I can override it to an extent.

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I have to agree with this. I'm one of the lucky ones who can still work. I think about retiring, but on the other hand, working keeps me going. Even when I do retire, I know I'm going to have to do some volunteer work somewhere, just to keep me mentally active. I just get depressed when I stay home.

Back to the topic though, Most mornings I feel pretty stiff and crummy when I get up. I know that's the same for most everyone here. On days that I stay home (weekends etc.) I notice my pain and stiffness all day, but when I go to work, it seems the minute I hit the door, the adrenaline kicks in and I'm better until I leave at night.

Now, I'm not saying that everyone should go out and get a job. I just feel fortunate that I'm still able to work, and that it does have a positive effect on me.

aloha, jeanne

if it's your opinion that most folks with as are on disbility or trying to get on disability well...that's factually incorrect.

the arthritis society publishes a marvelous 'sales brochure' to explain as ...it says most people work and live semi-normal
lives into mid to late fifties...many 'retire' early...your mileage may vary.
they'll send you one copy of the brochure for free.

i think the purpose of new medical therapies and, indeed the nsd/lsd regimine, is to avoid disability.
disability is the pits. it's a limited income based on what your earned while working and medicare.
You have posted great success tales on the diet page...were you being perhaps overenthusiastic ?
is the diet not working for you any longer? what then might be plan B ?

working is a great thing...i miss it badly, breaks my heart not making little treats and cool stuff for people.
personally it was always theraputic to focus my mind on tasks, skills and quality control not aches and pains.

i agree that ma seems to have lost it...work wont cure as...
but the malaise of a life of waiting till you're bad enough for disability...work or therapy can help that and
work generates income...

communication is a two way street...i'm not good at all this.
but
i'd have probably shouted " you _____, work wont cure it, nothing will cure it, that's part of the problem"
(and if i were being really trashy, i could throw in did i get it from your miserable side of the family)
i said...i'm not good at these things.

don't give up...ya gotta keep fighting
best
alohaBen

Hi Jeanne,
We just tease my Mom about favorites. According to the same brother(I have 3) I am the favorite; or it's a toss up between my oldest brother and myself. You should hear my family tease me about my dog(picture below). They all claim he's the favorite now.
I have to say I'm lucky in that my Mom never doubted my pain or the fact that I have AS - she just didn't understand it. Unfortunately she is learning more about it daily. I sincerely hope your Mom comes around. Would it be reasonable to take her to a doctor visit with you? I'm so sorry she isn't supportive, support gets us through the day sometimes. Meanwhile continue to come here and we will definitely be here for you. Take care, Wanda

Hang in there...obviously your mom does not understand...perhaps bring her here and check out the family members section for support...does she know your doctor's diagnosis????
WE all understand and have been through similar upsetting senarios...remember you have access to thousands of KA'ers here!!
Peace
Linc

Hey, exploding is good ... so long as it doesn't actually involve straping explosives to your chest. Seriously, you have every right to put a match to the fuse...but it won't do any good. If, after the time you've been together, she hasn't seen the light, perhaps you should buy her a cane and a guide dog...as a goodbye present. Having AS is hard enough for anyone to live with...being married to a bigger pain in the AS is more than anyone should have to endure.

As I said in a previous post, I do what I can do and don't do any more. And I don't complain or apologize. If it bothers anyone, I really don't care. When it comes to my health and my limits, it's nobody's business but mine and to hell with those who don't like it. That may sound harsh but it works. Those who accept it remain in my circle, those who don't are history. Life's too short to take crap from small minded people.