Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I'm new here and could really use some support

Hi Everyone!

My real name is Kristy and I was recently diagnosed with AS. Okay, so it wasn't that recent (about 6 months ago), but it feels like yesterday. I mainly have pain in my SI joints and some in my mid back area but on a positive note I think the NSAIDS that the doc prescribe have helped tons. Anyhow, I'm sure I'll have plenty of time to tell everyone all about my aches and pains.

I'm 27 years old, I have a wonderful husband and two amazing young girls. Life was almost (but never is) perfect and now I am struggling to come to terms with this disease. I'm sure you have all felt alone and scared by this at one time. What I would like to know is, how do you pull yourself together and get the motivation to help yourself. I know I have to do the exercises, but have put them off daily. I have been to a back rehab clinic for two weeks and excelled at it and the minute they let me go, I lost all of my gusto. I dunno, I guess it is just a case of the blues. Please feel free to share with me the ideas or things you have done to self motivate yourself in order to keep yourself healthy and on top of this disease.

I know i've come to the right place because I have been reading your posts for a while now, just trying to get the courage to join in.

I hope to hear from many of you,
Take care for now,
Kristy

Welcome Kristy! You have come to right place for advice, comfort and friends.

It good to hear that you are getting relief with NSAIDS. I think when one first learns they have or may have AS they tend to be frightened by it. It definitely can turn one's life upside down. I know from my own experience I was scared to death. I had just had 2 babies 15 months apart and the youngest was 4 months. I thought I would never be able to play with my little guys the way I wanted to, be it rolling around on the floor or giving horsey rides. Let alone caring for them. I was devastated to say the least. Luckily for me I feel much better physically. Grant you I don't give horsey rides. I am on Bextra and Flexeril occasionally. It took me awhile to get over the initial shock of having early AS or what seems to be AS. I do get in what I call a "funk" every now and again. As for losing your gusto, you just need to get yourself in the habit of exercising. I know it is a hard thing to do especially when you have little ones to take care of.

Again, welcome to Kick AS. Please join in,

Take care,
Cara

Hi Kris,... and Welcome to KA!

Hey, I see you are a fellow Ontarian! What part of the province do you live in? We have a few members from around here and every now and then we even get together for a little meet-up (usually in warmer weather tho)! I'm live in Markham just north of T.O.

Sorry to hear you have AS. I've had it since I was 19. Hope you come to love this site as much as I do. It is a wonderful place to learn tons of info about AS and to meet some really great people too! It is a hard concept to get use to when first dx'd; having a chronic illness is not a good deal but this place will help you see that life can still be lots of fun!

Take care.

mig

Hello Kristy and welcome to Kickas

It took me a full year to come to terms with some of what it meant to live with a chronic disease like AS, and I still have my ups and downs 8+ yrs later. That is why this website is so great.... there are so many supportive people here to help you out when you do need that push They have helped me.

I have found staying active helps the emotional side of AS quite a bit... not necessarily exercise (although I do stretch twice a day and think it is essential)... can be sociallizing, volunteering, gardening, walking etc.... helps to take your mind off of the disease. This was the best advice my father (AS for 30+ yrs) gave me.

You may need to make some adjustments in your lifestyle... I have given up basketball, soccer and volleyball from my 20's, but I have found other activities to replace that I also enjoy.

Also, as you proceed on, you will learn some helpful tips to help out... I use special seat cushions in my car, at home and bought a special chair for work for my hips. I also use my diet to greatly reduce my AS.... I can not take most meds now and doctors will not prescribe due to liver, so I once thought future was hopeless, but learned about the No Starch Diet here and have had good success since.

So stick around, learn some, laugh some and receive the greatest support available for free

Take care,

Tim

Hope is only a post away with KickAS.

Hi Mig and Cara,

I'm glad to hear that there are other people from Ontario on this site. Makes me feel a bit more at ease. I'm from the Thunder Bay area, way up north.

I have checked out this site a number of times and I think the info on here is amazing and I'm looking forward to meeting a whole pile of new people.

I think that most people on this site have been dealing with AS for a period of time and i'm hoping that through other people here I will be able to gain the confidence and the motivation I need to work with AS instead of against it. I think I have hit a huge slump and I keep telling myself that the only way to deal with this is head on, exercise, and med's.. I just havn't listened to my own advice yet. I'm glad to have found a site with so many caring people in it, I have been reading messages here for quite a while and I think that coming here will help me out a lot.

As for the occasional get togethers ( in warmer temps), I really think that would be fun. please keep me updated.

Thank you so much for the warm welcome.
Kristy

Hi Kristy

I dont have AS, but my 13 year old son Eric does.

I wanted to welcome you to the family. You may not realize it yet, but this place and the people here will become very important to you.

Things are usally quiet on the weekends, but ask your questions, and you will get answers.

Again, welcome.

Lori

Hi Tim,

Thank you for your wonderful advice and the warm welcome. I will be around and probably often due to this amazing support group that everyone here has formed.

Kristy.

Hi Kristy,

Welcome to KickAS. Coming to terms with your newfound disease is a tough one. Some of us have and many will never be able to deal with it. While there is no cure for AS there is plenty we can do to make it more comfortable. Diet, exercise, medications and support from family (which you already have) are important factors. We're all glad your here. You will find support and answers to all your questions from this great group of people.

Again Welcome,

Fred

"Even if your on the right track, you'll get run over if you just sit there." Will Rogers

Hi Kristy

I'm so glad you posted here for all to get the chance to meet you. I know you will meet alot of very nice people here because I did.

John

Hi Kristy,
Welcome, I only joined about one month ago. The feelings your having are completely normal and the fear will lesson especially when you start feeling better with the NSAIDS.I too live in Ontario, I remember clearly the day I was diagnosed after 3 1/2 years of severe pain and being told it was a"nerve disc protrusion"I was working as a nurse at the time and I was continually told you" probably hurt your back at work" I remember saying to these guys you don't run a constant fever when you hurt your back(ha) Finally my toes started to be very painful and swollen and then it dawned on me and my brother the doc. that this was probably arthritis. Bone scan, done, lit up like a christmas tree, HLA B27 positive, etc,etc. and presto we had a diagnoses. It was Nov 25 1987, I sat in the office being very stoic and took the prescriptions and headed to the parking garage. I got into my car and I started to cry, not sob ,but cryyyyyyyyy.It took be thirty minutes before I could compose myself to get out of the parking garage and get home. I cried somemore at home and then realized I had to work the next day so pull yourself together. The ironic thing about that was my back was painfree then but my feet sure were inflammed. The days past and then did the months and I just had to get into a good routine. I swam four days a week and even did some aquafit when I could, and lots of stretching morning and night.Get your two girls involved as well, take them to an indoor pool and you will all have a great time. I guess what I want you to realize is everybody is different and luckily women in general do not have the severe fusing in the spine and neck as the men do. However there is always exceptions. I do have fusion in the lower back after 23 years, but not higher, I have had a lot of peripheral joint problems instead.You will learn to listen to your body and its needs better then anybody else. Try to be cautious with trying completely unprooven treatments that are costly, because I for one spent a fortune on chiroprators, natural paths, etc. I think it is always worth trying some of these but don't be taken in by some who only profit from your frequent visits. I will look forward to reading your posts on how your doing. I can assure you one thing , if your reading this tonight I is very very cold in Ontario.
Take Care I wish I good give you a great big hug!
Janet