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Where We Live

12 Comments 10 March 2011

Where We Live

People affected with Ankylosing Spondylitis live all over the world. It may be a subdivision, or an apartment, and possibly even in the home a block away from you. As a person battling AS, I have found that I do not limit the place I call home to only the one that provides a roof over my head, but to the community in which I find the love and support I need to help in my daily fight with AS. The Ankylosing Spondylitis Community. The courageous people in this community consist of AS Warriors, their family and friends. People who do not judge, but want to sincerely be there for each other. They are an open ear, a caring heart, and people who truly want to know more about each others experiences with AS. With AS Awareness Month coming up in April, I know it’s our month to shine. We must do all we can to continue spreading awareness.

I have met amazing AS’ers who are also doing their part in helping to spread awareness. Each of us with a creative way to reach out to others. I consider them some of my closest friends. Although I have not met the majority of them in person, I feel like we have known each other for years. I know I could email or call any one of them on a “bad” day for a sympathetic ear, suggestions, or to compare stories, and know that judgment will not be had throughout the conversation. Am I thankful for having Ankylosing Spondylitis? YES! Without my diagnosis I would never have met a long list of some of the strongest people I’ll ever know. Thank you to AS for blessing me into a community of hope and comfort.

I have several sites that I visit frequently. An obsession of mine is The Feeding Edge. Jenna V. is amazing in her creativity. She uses art to help spread AS awareness. Her positive approach touches so many of us. I wake up each morning looking forward to what Art Apple A Day will come through my email, Facebook & Twitter feed. Her work is so remarkable I have requested my own “Jenna Apple” painting. Her work has inspired me to create a room in my home dedicated to apples. My husband wasn’t sure about an “apple” room  at first until I explained my reasoning behind it. Ankylosing Spondylitis has made such an impact in my life, good and bad, that the meaning behind the room is crucial in my battle. It will be a reminder to never give up the hope that tomorrow there may be a cure. Jenna and I are always joking with each other that it’s kind of scary that we have so much in common. We both are always looking ahead for the next possibility to help spread AS awareness. Jenna and I physically live several states away, but we know we can come to our AS community and feel right at home together. My hope for all of you is that you also find the strength and comfort in our community. Move on in, the neighbors are great!

Below is a list of some of my favorite AS Communities. Check them out! Together We Can Help Set Things Straight!

  1. The Feeding Edge & Art Apple A Day
  2. Spondylitis Association of America
  3. Ankylosing Spondylitis Awarenes Project (ASAP)
  4. Ankylosing Spondylitis Mom
  5. Loving With Chronic Illness
  6. Ankylosing Spondylitis Answers
  7. Spondyville
  8. Live Art.fully

Your Comments

12 Comments so far

  1. Susan Dye says:

    I’m Jen’s Mom and I read this with tears running down my face. Thank you. I hope to continue with all of you to bring awareness.

    • admin says:

      Thank you Susan. Jen is amazing! She has a huge heart! You should be so proud of all she does! Your support means the world to our community!

  2. Jenna says:

    Ok Ladies, now I’m crying. I never expected to find such amazing friends when I started speaking up on my blog. Amanda is now family to me and of course that means she’s family of my family as well – I’m so glad the two of you have now met :) You are both extraordinary women! xxooxx

    Oh – and Mom – you are part of our community voice and it means the world to us!

  3. Jennifer says:

    I, too, am thankful for the amazing AS community & all of the resources and support we have. Previous generations diagnosed with Ankylosing Spondylitis would likely never meet another person with AS or have access to resources. It helps to know we are not alone!

  4. Rich says:

    Hi All:
    My Mom was always my biggest supporter until she passed away in Feb of ’09. Now she is still with me in my daily struggle from heaven with this. I will do all I can to prompt awareness amongst those that I know in April.
    May the Good Lord Bless us AS Warriors each and every day.

  5. Kate says:

    I am so happy to have found this website-thanks to a tweet from Jenna :)
    The online community has been an incredible source of awareness and support for me since being diagnosed with AS.

    Although we couldn’t be much further from each other-I’m in Australia!-I feel an constant sense of support each time I look at websites like this.

    Love to all :)

  6. Rachel A says:

    I was just diagnosed this past week with Ankylosing Spondylitis. Although this is a recent diagnosis, I am 32 and have been in chronic pain for the past 16 years with Endometriosis and pre-cancerous inverted colon polyps. 8 years ago I had to have a full hysterectomy after my 6th laparoscopy to clear out Endo, scar tissue and adhesions.

    In the past two months I have also been diagnosed with Fibromyalgia, Degenerative Disk Disease and Rheumatoid Arthritis.With all of these combined conditions, my daily pain can be excruciating.

    I am currently waiting for approval from my insurance company so I can start Enbrel. I am looking forward to getting some relief from the constant pain. Did you have any side effects from the Enbrel? I am not sure what to expect.

    Do any of you have a hard time living on your own? I am a little nervous being on my own but don’t want to have to sacrifice my privacy and own space.

    Also, have your employers been supportive of your AS diagnosis? After letting my bosses know about my condition, they have asked to meet on Tuesday afternoon. I am nervous but am not really sure how to respond.

    Any advice would help!
    Cheers,
    Rachel A.

    • Daniela says:

      Thank you, Jennifer. The most rewarding thing for me is knnoiwg that what I’ve experienced and am now relaying to as many people as possible might actually help others too!! I would be overjoyed to know that someone who is now in the kind of debilitating pain that I was in might see some of these stories and learn how they too can ease the pain and improve their whole life. Chronic pain and diseases like RA affect an entire family. My daughter watched me going downhill and struggling so much for all that time and I know it scared her more than I can probably imagine. I’m doing everything I can to spread the word wherever I can (PS: Anyone, please friend me on Facebook if you like. I’m Gretchen Linden, Missouri USA), so knnoiwg that you also want to share the info with others really makes me happy, Jennifer. Happy 2012!!!!

  7. ZEB says:

    Hy…h r every1….i m person who is fighting against AS last 9 years….very hard to b continue against AS…..very painful decease..but i m trying my best…help me anybody how we recover this… Tc…GOD bless
    on you…………….

  8. asadi says:

    hi everyone I have AS. please help me. this is asadi_chomsky@ yahoo.com . I am 35. Iam hopeless.


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