A.S. Face 0038 : Sara Frankl

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Choose Joy: Finding Hope and Purpose When Life Hurts Hardcover

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Choose Joy

    The Sara Gitz Frankl Memorial Foundation

Sunday, June 1, 2008

Just a Part of the Whole

When I stopped dreaming I could run, I knew for sure my life had changed permantly. The disease I have is called Ankylosing Spondylisti and it’s different for every person that has it, which makes it difficult to predict where your journey will take you. The basic explanation is that it is an autoimmune disease that usually starts in your early twenties amd begins attacking your joints. It is progressive and systemic, but the progression and systems it can affect are as different as your genetic make up. For me, it began in my sacrum (low back) and my spine. The “goal” of the disease is to attack the joint and build scar tissue around it, causing pain and stiffness. Then the scar tissue eventually (for many) turns into bone and fuses your joints together.
Until recently, most doctors believed that AS was a man’s disease and was rarely seen in women. It is now known that it is prevalent in women as well, and they are learning the progression, symptoms and x-ray findings can be significantly different in women than men, which will hopefully be helpful in future diagnosis.For me, over the course of the last 14 years, the disease and my life have changed dramatically. I won’t go into a play-by-play for you, partially not to bore you to tears and partially because all of the years tend to run together after awhile. I will say that in the beginning it was pain like I had never felt before, which was compounded because no one knew what in the world was wrong with me. I had a lot of the knowing nods as if to say, “Oh, that silly little girl is overreacting.” I actually had one doctor ask me if I had a boyfriend that was stressing me out. I wish I could tell you I had a witty comeback for him, like “The boyfriend is fine but I’m finding you very stressful.” But when you are exhausted, sick and in pain all you can think to do is look at him bewildered and say, “No. I’m not sad, I’m in pain.” And sadly, that doesn’t always get you very far.Once the diagnosis of AS was put on the table, everything about my body started making sense, and things that I didn’t know went together turned out to be symptoms of the disease. The pain, the digestion problems, the night sweats, the bouts with iritis. Ahh, the good old days. Things have gotten more complicated since then with breathing issues, swelling of joints and more areas of my body being affected… and the exhaustion. I also have leukopenia, which basically means my white counts remain lower than normal, and actually decrease when I’m sick instead of increasing. This means I have to be ridiculously careful about being around someone with the sniffles for fear of getting pneumonia, which has become somewhat of an expected yearly ritual for me.My life now, to put it bluntly, is painful. If I’m having a good day it means my pain is moderately high at best, and I’ve showered and gotten around my house without having to give myself a pep-talk first. I have someone who gets me groceries once a week and another person who cleans my condo every other week. A year ago I was able to drive myself periodically to Walgreen’s for short little errands, but it’s been a long time since that was an easy trip. I don’t count out that I will be able to do that again, but it’s not in my reality right now.

And living in the now is the easiest way to handle my life. It all changed when I realized that in my dreams at night, I was walking with a cane or crutches. And in my waking thoughts I can’t imagine I ever ran track or jumped over a hurdle without it being painful. I don’t remember what it felt like to not have pain, and while that was upsetting at first, I think it is actually easier this way. I don’t long as much for something I can’t imagine. I think if I dreamed I was running every night, waking up to the reality of having to figure out how to get out of bed would be crushing.

Other than the crutches and the wincing in pain thing, when I’m not on steroids I look pretty average and healthy. And I don’t want to look otherwise. I will write about this as part of my life, but I’m not going to lament endlessly on this blog about my daily struggles and pains and complications. It’s hard for people to understand that just because I’m not complaining, it doesn’t mean I’m getting better. It’s just that when you ask me how I am, I’m more likely to tell you how I am despite my disease, not because of it. I am more than that. I’m more than a sick person. I’m a person who is sick… and as I often tell my mother, my body is brutal but I’m ok.

My life is a difficult balancing act, but I am not being flippant when I tell you that I have a good life. I have a home, friends, love and support. I have that cute dog I’ve talked about at length and I have the time to really be there for people when they need me. This is not the life I imagined for myself, but it’s the life I’ve been blessed with and I won’t take a moment of it for granted. And if you’re taking a moment to read this blog, I’m not taking that for granted either.
Thanks.

Dedicated to Sara Frankl

with much admiration and respect,

We are Choosing Joy Sweet Sara.

Iowa United States of America


20 Responses to “A.S. Face 0038 : Sara Frankl”

  1. Sara, was one of the reasons I felt so strongly about making a difference in the Ankylosing Spondylitis Awareness Movement. One of my friends mention she was loosing a friend and from that moment on my life changed.
    I hope everyone understands why I included Sara in our Faces Of A.S.
    I read her blog and then typed out her story and added her blog here. I picked the Face # 38 Just for her, that is how old she was when she died.
    Rest In Peace Sara Frankl

    Sincerely Cookie

  2. Oh Cookie, that’s so wonderful and awe inspiring that you included dear Sara as “face 38″. I too, read her blogs, and it was so touching to read what she had to endure and how she chose JOY to get her through. She was truly a brave person, and she gave inspiration to others with her blogs. She is running and making all the hurdles up in heaven without any pain now. God bless her. Rest in Peace Sara Frank!

    Hedy Francois

    Hedu Francois said this on October 23, 2011 at 7:09 am

  3. Sara was such an inspiration to me–in so many ways. She reminded me we have a choice of how we view our lives, each day and living with AS. She left such a wonderful legacy and continues to be missed greatly. RIP, my friend.

    Elizabeth said this on October 23, 2011 at 7:27 am

  4. This is so sad, Sara died much too young. Did she have complications from AS that caused her to leave this world too soon?

    Christine said this on October 23, 2011 at 10:16 am

  5. Dear Christine,
    Sara’s Ankylosing Spondylitis caused many health issues that over the years became too much for her body to handle resulting in her departure from this earth too soon.
    Sincerely Cookie

    Cookie Has AS said this on October 23, 2011 at 3:59 pm

  6. I’m so happy you included Sara. She was my dear friend and I’m missing her terribly. I came here not knowing Sara would be included…I’ve been reading stories for an hour, crying…wanting to thank everyone for being open and sharing. And in every story of course I saw a bit of our Sara.
    Thank you again for including her.
    Sending gentle hugs to everyone and so much love
    Robin Gay

    Robin said this on October 23, 2011 at 8:26 pm

  7. Dear Robin,
    Thank you so much for taking the time to read the stories. I agree I see a little bit of Sara in all of them. I had just learned about Sara a week or so before her death. A friend of mine mentioned her and I spent almost 72 hours straight reading her blogs, wanting so much to get to know her, and I feel as if I did. I was touched and changed from the moment I clicked on to her blog. I wanted to make a difference in people’s lives as she did, I just wasn’t sure how I would. Then I met Kevin Andrews who is the one who posted his blog and pictures online. I thought there it is. I love what we all do, Sara taught us to Choose Joy, Kelly teaches us to hope, Michael teaches us to laugh. I hope to remind people and society we are people. We deserved to be heard. I debated adding Sara but I tried contacting her family to ask permission. Then I realized that they would want her to be here, because she is the face of AS too, if not the face. Thank you so much. Many blessings. Sara was blessed with so much love just as everyone was blessed with her love as well. Thank you again.
    Sincerely Cookie

    Cookie Has AS said this on October 23, 2011 at 8:35 pm

  8. I’m crying right now. To think this beautiful woman died so young…is heartbreaking. What words can there be? Thank you Cookie, for sharing this remarkable woman’s story with us all

    Nicole Kalnicki said this on October 24, 2011 at 3:09 am

  9. Dear Nicole,
    Sara is one of the reasons I wanted to do a “serious” truthful site about Ankylosing Spondylitis. It was and is important to me for people to make educated and informed decisions about their lives. I feel had I been made aware that A.S. is a serious illness and life altering disease maybe I would have done things differently. I had to include her, she is the one that touched my soul to do something meaningful in my part of raising AS awareness. Kevin inspired me to “what” I would do. Thank you so much for being a part of my vision.
    Sincerely Cookie

    Cookie Has AS said this on October 24, 2011 at 3:44 am

  10. feel the same way as cookie,it was thru cookie i have any idea of sara,i wish i new her and talked with her.may 13 is a hard day for me and a beautiful day.my great grandmother was also born on this day and her daughter my grandmother died on this day.i feel so conected to sara.i do not grieve for her,she would not want this.i instead envy her.she is free of pain,sadness,worry and want.she is now free to breath without promblems.she can now smell fresh air again.she can run and jump without pain.she is with our Father in Heaven.i want all this too.she is JOY and i will never forget her and what i learned from her.she is at peace.i can’t wait to meet you sweet sara and one day we all will.

    Colleen Seaman said this on October 25, 2011 at 1:34 am

  11. Thank you Colleen that was so beautiful, Thank you my friend!

    Cookie Has AS said this on October 25, 2011 at 3:47 am

  12. Thanks for sharing this with us Cookie. I have heard her name and saw her photos..I am sad for myself for not meeting her but I am happy she is no longer in pain. She is still sharing her message through this site. I really like this,,, “when you ask me how I am, I’m more likely to tell you how I am despite my disease, not because of it. I am more than that. I’m more than a sick person. I’m a person who is sick…” – it makes so much sense. Thanks Cookie and Sara, for bringing us together.

    Diane Scribe Niiganii said this on October 25, 2011 at 2:24 pm

  13. your welcome!

    Colleen Seaman said this on October 25, 2011 at 5:22 pm

  14. Dear Diane,
    It just wouldn’t be right to not include her. She did more from her house in three years than most do traveling the world in a lifetime, she touched lives and changed people. Thank you so much for your continued support to everyone!
    Sincerely Cookie

    Cookie Has AS said this on October 26, 2011 at 1:53 am

  15. Thanks, Sara

  16. I didn’t know Sara. I am inspired yet so sad sad that she was so soon. Her story makes me feel like a baby. Well, not really but I wish I had her strength…. R.I.P. Sara ♥♥♥

  17. Sara was the reason behind my tattoo. I honor her and my friend, Phyllis, who died from AS. You can see the story here: http://sandysandmeyer.wordpress.com/2012/05/25/choose-joy/

  18. It’s been almost 3 yrs since we all lost our sweet Sara, yet I start crying like it was yesterday as soon as I read her words again. I never met Sara. I sat in Texas reading every post she wrote & her words became the highlight of my day. I became very aware of a disease I had never heard of before. I laughed & cried as Sara shared her good & bad days with the world. I remember so well how scared I became as her posts became less frequent. She was very ill & we could all sense we didn’t have much longer to share with her. I thought about Sara & her struggles daily. Checking for a new post was the 1st thing I did when I came home each day. I still feel sorry for myself that she’s no longer here to share her joy with me, but I’m so happy that she’s free from her pain. Thank you for sharing all the important stories of this terrible disease.

  19. Thank you so much for sharing this story. She sounds like she was an amazing person and very strong, and gives me more of my will to fight this horrible disease!

  20. […] Here is her story on Faces of Ankylosing Spondylitis. A.S. Face 0038: Sara Frankl […]

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