Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group GRRR Family

My DH said i sound just like a girl who i was trying to help a few years ago but have nothing to do with now. She is a very annoying young thing who blames everyone and everything for all her problems. She also smokes pot to cope with life.

so to hear that my discussing my medical problem (explaining why i cannot just get contacts for swimming) with him made him think about HER cut deep. I like to think I am coping pretty good, but yeah I talk about what is going on in my life with the one person i should be able to talk to about it.

Ditto here. Just called my mother this morning to tell her I was admitted to the hospital last night because I have had bad breathing spells for 3 days and they were getting worst. She says "Oh what the hell is next" It's always something with you!

((Pea)) I am so sorry....for all of it! I didn't know you are in the hospital. I hope you are getting some relief. Maybe? your Mom meant that in a good way; that she realizes that there is always something new happening. Good thought anyway, huh?

Hugs to all of you. We will make it through this together.

Possi

Well, I guess we've almost all been there. Hard to take. Like Joyce, I refuse to let others ignorance ruin my life. I have enough to worry about it's called survival.

Cindy

Hi Aussiegirl,

I am sorry you had that happen to you, if I could give you hug I would. I have had some family react in a way I did not like and I have had some wonderful talks with family and felt comforted.
In regard to the family that did not act the way I liked, I thought to myself that I may have done that to somebody in the past unknowingly. Now I am sensitive to anyone that tells me their health issue because I know how nice it is to have someone truly listen and care,that is real love. Also some people don't know what to say.

I hipe you feel better!take care.

Pea: I didn't know you are in the hospital. It is scary getting sick on these meds. What do they think is causing the breathing problems? Sorry your Mom reacted poorly to your phone call. Is she the type of person that just doesn't know what to say? I am sure she loves you but said the wrong words in the moment. My Mom does this and I shrug it off knowing she shows she cares in other ways.

Hope the staff are treating you well at the hospital. Feel better soon.

Shari

Hrmphhhhhh! Yeah, YOU and the other 9000+ people who have registered here don't have this same disease - in fact, it's not even a real disease, which is why there are no published articles in respected peer-reviewed medical journals or a mention of it in published medical textbooks..............

No wait, I think I am confusing AS with $*it-stirrer-itis which is possibly the disease your aunt may have - perhaps it is as yet undiagnosed.....

There are no words for this type of scenario Trish - well, none that I would be able to type without a BIG slap from our beloved leaders...

Please don't waste your limited energy resources - both emotional and physical on folks like this. You have more important things (POSITIVE things!) to direct it into.

In all seriousness though, I do think that those who have a very stubborn streak and push on regardless of the havoc that the AS tries daily to wreak do end up doing themselves quite a disservice. Although I could not imagine living my life any other way, I suspect that sometimes when we can't do stuff and other times we can ( or just need to, so do so with no heed of the fallout....) it makes it look as if maybe we are *faking it* to those who are clueless about the somewhat arbitrary day-to-day variability of this particular monster.

(I have just had a MASSIVE flair that I was unable to kick down with fasting etc, so after a month of unbearable pain and swelling I resorted to a high dose quick Pred taper.... MAN - that is some good stuff!!! All of a sudden I go from moving slowly and carefully and being tired and grumpy to being like the Eveready Bunny on SPEED! I don't bore my family with a day-to-day report of how I feel, I just 'suck it up' and push on. I should imagine though that to the untrained eye this looks a bit like somebody who is sick/sore when it suits them!)

In truth, I was just sitting here trying to figure out how I can fit a visit to the myotherapist in anytime over the next couple of weeks. By the time I go to work, care for the family and do *extra* stuff because I have an exchange student staying here ATM I'm wondering when the "me" time is gonna be squeezed in......I've had killer headaches for the past 3 weeks and physio alone is helping but not giving me the MIRACLE that I need for my oh so stiff neck! Maybe if I just wish hard enough I will wake up and my imaginary disease will have dissolved?????

First off I would like to say a huge thank you to you all. I hate to say it but it helps to know that others have faced this also.

Pea: big hugs to you, sorry to hear you are in hospital. Truly hope you feel better soon.

Possi: yes You have been through the same,probably a lot worse. Thanks for the support.

Greg: I did hand out an info sheet to the family when I was first diagnosed and in a bad flare but some still choose to not believe it.

Stormy: Thanks for the advice on my daughter. I must admit it is hard to explain the benefits of the meds to her when I have reacted so much to so many of them but I will try and be strong for her.

Thank you again to everyone. What makes it harder for me is I can't just aviod this aunt. My mother and her own a shop together where I sell my plants out of and my daughter also works for them. We really are a close family. I actually get along really well with this aunt and I think that is why it hurts so much.

I am thinking maybe she is a little jealous of me also so this may be some of the reason. I have clinical diagnosis of IBS not quite IDB from colonoscopy. And I still go out to eat even though it means I will run to the loo after the meal. I don't let it control me in other words. Her colonoscopy came back completely clear but she has IBS and won't go out to eat she won't go to lots of places because of it and she won't even run the shop on her own for even 1 hour because she might need to go to the toilet. Each to their own I say but don't think that my problems are any less because I refuse to let them control my life, as much as possible anyway.

On a high tonight after seeing my 2 eldest children in their school production. Both have had so many health issue but you would never have known watching them on stage tonight. So very proud of them, their acting was amazing.

Take care all and thanks one more time.

No matter how they want to mask it, anyone who responds that way because they cannot discern from merely looking at you that you have any medical problem are simply selfish people.

THey selfishly want to unberden themselves from offering care or concern to you (and you are not asking for it) by presuming that you are fabricating your condition. Not much more a selfish and rather lazy act you can conceive.

What they are saying is, I pronounce you are faking it so that I won't have to make any emotional investment at all.

You will never win over those people. NOt worth getting frustrated over their gross shortcomings.

while i think you are absolutely right, it makes me think,

everyone gets sick every so often, feels miserable, and if its the flu is out for the count for a week or more.

so if people can get sick for a little while, then better, then sick again,

why can't people understand that a chronic illness could work the same way?

maybe that's the way i'll try to explain it to people in the future.

though wouldn't be surprised if some people never get it.

maybe its the constant roller coaster where people can't believe how variable things can be and how quickly and how often.

oh, i don't know......i think you're right, better to spend our precious energy on more positive endeavors!