Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I am new to this site and to AS, and Im not coping

Just wanted to hear your opinions on something if you dont mind.
I was talking to my doctor today about getting a disability parking permit.
I am just not sure as when I am ok I can walk not too bad and have even been pushing myself to keep going on patrol. I am a lifesaver at the beach but have just taken medical leave as its gotten too much for me.
But when this flares up like this I can hardly walk at all and just walking from my car to the doctors office today nearly killed me.
Do you think it would be fair of me to get the dissability parking permit and only use it on my bad days or is this wrong?

I have a disability parking pass and that's exactly what I do with it. I use it when I need to and not when I don't. I think it's quite appropriate. Good for you.
Think of all the things you can't do - maybe at least you'll have the privilege of decent parking. Yeah!

Yeah thanks for that. I just feel guilty as you see others worse off than you, especialy where I live as it is like a retirement Island LOL. Think I will get it, not sure how much I will use it though as to look at me you cant see the dissability except when I walk sometimes

I agree with Wendy. This is how I use my H-parking card too. You don't have to feel guilty for using it, if you need it you need it. On they days you don't use it, people will appreciate you much more for not using it on the days you don't really need it. That makes you a good samaritan(sp?).

There is handicapped parking where I live too, and I have never used it because some of my neighbors are wheelchair bound. I will have to use it elsewhere sometimes though, because some days I just can't walk well, or still need to use my wheelchair from when I injured my back.

Take care,
James

I couldnt leave this at post #13 lol
Forgot to mention the pain I had this afternoon was more in my jaw and neck. Wondered why I was waking up and finding it hard to open my mouth. Is this something associated with AS?

Also my 11yr old boy has osgoodschlatters in his knees and some inflamatory disease I cant remember the name of, in his heels, some days he cant walk. Do you think he should be tested for the AS gene thingy or leave it for now? He has just recently about 3 weeks ago complained about his back hurting also but he did injure his back quite bad last year. Well another kid injured him grr
What do you think?

Sorry for asking so many questions.

Hi aussiegirl,
Welcome to KA, Yes the jaw and neck are part of this wonderfull AS Ive been going through a lot of trouble with my jaw the last few weeks have trouble opening my mouth in mornings and painfull to eat.I have severe cervical kyphosis and nearly fused neck.

Kevin

Thanks for that kevin. Just wonderful.
Sorry to hear about your neck. When I had my CT scan the other week they refused to do it of my neck even though my doc asked for it as they were worried about radiation with my age and having kids. grrr tried to tell them I am having a historectomy (no more kids) but they didnt listen so I have no idea what my neck is doing other than symptoms.

All the time you can move your neck do even if it hurts once its fused thats it. You might be lucky because women present different from men you might not get neck problems but at your early stage keep active as you can. Ive been suffering 48years and if I had known about stretching and laying flat on the floor then I might not be as bad as I am.Use it dont loose it.

Kevin

Welcome to our KA family aussiegirl. You shure have a hell of a lot going on there. Real glad you found us and congrats, number 7 - should one say 'come in number 7!'

Yes, jaw stuff goes right along with AS. We've just been touching on that very issue in another thread over the past few days. Kevin posted that he was having problems with his jaw. There are several posts on the topic.

BTW, admin have put in a terrific search engine here. See top of page, *search*. Hit that, and down drops the box to type in your search word/topic etc. Hit that, then up comes all the posts relative to that search, going back over several years as well!

Now. For your son. Perhaps it was Planta Facitiis with bone spur and achilles tendonitis that your doctor mentioned? Yes. That is another AS problem/s. Connective tendons. Would suggest your son sees a good rheumatologist and gets checked out. Then will be in a position to deal with the problem right on, instead of guessing in the dark.

One tip. Quite diff to follow. When attending a doctor appt, make a list of three main topics you want to discuss. Write down the answers and never hold back in asking the doc for clarification on anything including asking them to repeat whatever it is. They will never take offence at that (might make em feel 'big' and god like, but preferably and more likely to, make em feel compassionate...'smile'.)

Go well hon - and take care.

Molly C (France)
Keeping on Keeping on (as we do)

Thanks Molly
And yes that sounds like what my son has. He has heel spurs and achillies problems and the heel bone is inflamed. He is stressing about it as he overheard me talking to my mum about it when I thought he was asleep. I set up regular chats with the school councillor for him incase he feels more comfortable talking to someone else.

I saw that tip on some site the other night. Thanks I will use it. My doc is great actualy. he writes down most stuff in my notes and then photo copies then for me. He has also said it is ok for me to bring a recorder in when I see him to make it easier for both of us.

Will def check out the search thing. thanks. I feels like all I have been doing is reading. LOL