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Introduce yourself Here
By
kellychristaljohnston
June 3, 2011 - 4:30pm
Hi, my name is Kelly and I have AS. I am 32 years old married with two kiddos, a son who is 4 and a daughter who is 5. Living with AS is hard being a young wife and mother, but it helps to know there are other women out there just like me.
By
TMH
October 15, 2014 - 5:03pm
Hello everyone,
Newly diagnosed as of today. I am looking forward to hearing how everyone deals with this disease. Never in a million years did I think I would be diagnosed with something like this. I have to admit, I'm a little scared. So far I don't believe my spine has been affected. Maybe I'm one of the lucky ones to get a diagnoses after only one year of somewhat severe symptoms. I have had inflammation of the eye, hip, & shoulder and feel like I have a bad case of the flu most days. I ache all over, especially in the morning. I asked my doctor right away "Is there anything I can do holistically to improve my symptoms?" and he said no. Please tell me there is.....Gratefully ...Terri
October 15, 2014 - 5:03pmThis Comment
By
Amber Bennett
June 4, 2013 - 2:37pm
Hi Everyone,
My name is Amber Bennett. I'm 28 and a single mother of three girls. Twins that are 5, and a three year old. Ankylosing Spodylitis has been a part of my life since I was a little girl. I grew up watching my dad Struggle with the disease. Unfortunately, He lost his battle due to complications at 38. I have had issues for a couple of years, not knowing these were A.S. symptoms. The past few months it seems like the disease has completely taken over my life. I haven't started any major medications yet. I'm in the process of determining a plan. It really scares me that I'm going to make (or be lead) to taking medications that lead to other major problems. I'm desperate for some pain management. I have done research and tried many things. Some days they help, but some days I can't seem to get any relief. I'm excited to talk to other women, and see what others have learned!
*Amber*
June 4, 2013 - 2:37pmThis Comment
By
Amber Bennett
June 4, 2013 - 2:37pm
Hi Everyone,
My name is Amber Bennett. I'm 28 and a single mother of three girls. Twins that are 5, and a three year old. Ankylosing Spodylitis has been a part of my life since I was a little girl. I grew up watching my dad Struggle with the disease. Unfortunately, He lost his battle due to complications at 38. I have had issues for a couple of years, not knowing these were A.S. symptoms. The past few months it seems like the disease has completely taken over my life. I haven't started any major medications yet. I'm in the process of determining a plan. It really scares me that I'm going to make (or be lead) to taking medications that lead to other major problems. I'm desperate for some pain management. I have done research and tried many things. Some days they help, but some days I can't seem to get any relief. I'm excited to talk to other women, and see what others have learned!
*Amber*
June 4, 2013 - 2:37pmThis Comment
By
jilljo
April 13, 2012 - 5:27pm
Hi, just found your group, it sounds great, I have Ankylosing Spondylitis, too, just diagnosed a couple of months ago, but have lived with limitations and disability, since childhood - they did not diagnose told me - nothing wrong with you - all in your head! Back pain, everyone has that, so what. So have put up with pains, dozens of symptoms. Found this site what a find! Its not in my head- whoa what a find.
April 13, 2012 - 5:27pmThis Comment
By
nanfitz
November 6, 2011 - 3:08pm
HI, I'm so excited that I have found this group as I live in rural Montana and groups are few and far between. Looking forward to a lot of great information and support.
November 6, 2011 - 3:08pmThis Comment
By
Violetsrblue
October 3, 2011 - 3:08pm
Hi Susan,
Thanks for your response and suggestions. I will be starting an aquatics group soon. Unfortunately the only times available are during working hours but it's important so I'll find a way. I agree that it will help. For the past few weeks I've been in this terrible pain cycle that has made it nearly impossible to move but the doc put me on predisone a few days ago and the pain is easing up enough that I'm definitely more comfortable. He and I meet tomorrow and we'll talk about taking me off humira and trying enbrel. Don't really want to do an IV drug like Remicade but if it comes down to no life or remicade, then I'll acquiese. Today, I'm just happy to have some relief. Since I was diagnosed a year ago, it's been difficult to keep up with my work life as well as the things I'd like to do but I have hope. Thanks again Susan for writing and I look forward to hearing from you again.
Denise
October 3, 2011 - 3:08pmThis Comment
By
Violetsrblue
September 28, 2011 - 11:11am
All, I'm glad I found you. I've been looking for a chat group to share information and experience with regarding AS. I am a lot older, 52, but I'm pretty sure I've had AS most of my adult life. I ran the gamut with a variety of clinicians from Chiropractic to Physiatrists trying to get help with neck pain, tendonitis in my elbow and hip, low back pain and the list goes on. Aches and pains every where. About 15 yrs ago I started to have tummy troubles. Last fall, I "interviewed" a new family doc. We chatted a bit and I told him, if you could help me figure out my belly and back issues, that would be amazing. We talked at length and he ordered the genetic testing. Bingo! I've been on humira ever since but I'm loosing ground as far as functionality goes. I used to dance 3-4 nights a week, walk the dog for a couple miles several times a week - even at 50 : ) Now, I do a little puttering in my gardening, a little housework, and shopping trips are broken up so I won't have to use pain killers because I spent to much time on my feet. I'm stuck and it's sad for me to see dancing, hiking, yoga, activities I loved, become part of the past. Anything you'd like to share - tips, tricks, jokes, inspiration- I'd love to hear from you. ~Denise
September 28, 2011 - 11:11amThis Comment
By
Mcastaneda
July 22, 2011 - 2:08pm
Hi! My name is Mary Grace and I too am a young mother with AS. I'm 35 years old with an 11 month old daughter. I've been living with AS at least 5 years and I am so happy to find a group to share experiences with. It is difficult but I want to always be optimistic with finding ways to stay healthy and get myself physically active in order to live with AS. If anyone has any recommendations on what kind of exercise or yoga videos to use, please let me know.
July 22, 2011 - 2:08pm
Hi! My name is Amy, I'm 30 years old, in a relationship of 10 years, and mother to an amazing 6 year old daughter. I have not had an official diagnosis yet, but found out that I am hla b-27 positive last week and my doctor suspects AS based on symptoms. Looking for information and support as I work through this.
March 29, 2015 - 6:02amThis Comment