Wednesday, September 15, 2010

Betsy































Name: Betsy
Location: Rochester, MN
Age: 32
Diagnosed with Ankylosing Spondylitis at age 31

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How has your condition impacted you?  It's still hard for me to take in that Spondylitis is something I have, and am going to have to deal with going forward. I was in denial for quite some time. I hoped that I was just misdiagnosed again. It has only been recently that I have come to a point of acceptance and understanding to tell people outside of my intimate circle of friends and family. I am learning who my true friends are and that not every one can handle my new reality. I am learning that I have to create balance in my life and carefully choose how I spend my energy. I am constantly working to reframe my grief for the things I cannot do, but instead look for new ways to find joy. My condition really has impacted how I view and prioritize my life, more than the obvious physical obstacles. Inflammation in my sacrum extends into the lumbosacral plexus which causes shooting pain down my legs along with localized sacral and pelvic pain. I am stiff in the morning and quite fatigued, which is difficult as a mother of 2 young boys.

What would you like for other people to know about your condition?  First, if you have not heard of this disease check out the following website to learn the basics: www.stopas.org. Also, the scientific understanding, research, treatments, and prognosis are constantly evolving with this disease. Although I was initially shocked by my diagnosis, which sent me into a deep depression, I am now grateful for the diagnosis in that at least I don't have to keep wondering what is going on, and of course treatment designed for the disease you have is always better than treatment for something you don't have! I do have hope that advances will slow progression or even bring a cure.

What would you tell someone who is newly diagnosed with your condition?  There is hope. There are many approaches to treating this disease.  I think having faith in your physicians and care team is essential. No question should be disregarded and you need to seek the treatment approach that you are comfortable with.

I am a mother of 2 young boys and was unable to accept the textbook answers I was getting from the first rheumatologist I saw. I was uncomfortable with a symptoms based approach. So I did my research, looked at clinical trials, read endless scientific journal articles, and found a rheumatologist who had the approach I desired, to treat the disease systemically and try to slow or halt progression. There are endless treatment and lifestyle choices to explore.

When I shared my diagnosis with my aunt, she sent me a beautiful note. I hope this excerpt helps you as it has aided me in staying grounded on even the most painful days, “I believe that God gives us life with a purpose attached. And that purpose, whatever it may be for each of us, still remains no matter the circumstances. And sometimes difficult circumstances can even bring our purpose into sharper focus.”

Thank you so much Betsy!!
(And thanks to Maya for introducing us!)



7 comments:

Mintyfresh said...

It's great to see someone so recently diagnosed and so vibrant and ready to take on the long road ahead! another gorgeous photo, Jodi!

throwingwaffles.com said...

another really gorgeous portrait of an inspiring woman. her stories of fighting to find the right doctor who took the approach she wanted are really inspiring, too!

--elizabeth

Cybergabi said...

Great portrait, Jodi. With the Mayo Clinic around the corner, she probably gets about the best treatment possible, which is wonderful. Still I am constantly amazed about the positive attitude of most of the people you interview. They are all such strong women and men.

Cathy said...

I always love your photos. It is so wonderful to see happy smiling people that are going on with their lives and doing great things. Thanks for this gift to us, your readers.
PS: I am in Chicago if you are ever visiting. :)

Lori said...

Whoo Hoo! Another triumph, Jodi! And to Betsy, I wish to say that you are beautifully articulate and inspiring. When you feel like crap, look at this photo of yourself and know you are not only going to be OK, but that you are thriving.

Jodi said...

thanks everyone!

@cathy: i will be in northern indiana around christmas. maybe we can meet halfway or something. if you are interested, please e-mail me!

Jahangir alam said...

Hello, have you looked into stem cells therapy? It seems to be very good: my friend works in a clinic in Mexico where they give embryonic stem cells treatment and she told me they get better result than anything else... What's your thought about this kind of treatment? Most people that i talk with are scared because it's so new!

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