My journey with Ehlers-Danlos has been long and hard and there is more yet to come. I think it began in church when I was very young. My older brother wanted to get me to scream during a very quiet part of church. So he took my hand and pushed my fingers back so hard they were nearly resting on the back of my hand, yet I remained silent. It didn't hurt at all. When he realized it hadn't even phased me he immediately let go of my hand and looked at me with disgust. He was so grossed out that my body could contort like that with no pain.
My EDS was complicated by two pregnancies. The first wasn't terrible, but it was bad enough that I had to go to several specialists and high risk doctors before even having another baby. And all of them said the same thing: "Don't have another baby." Remembering my first pregnancy and how it was bareable I thought they didn't know what they were talking about and went ahead with baby number 2! After six weeks of pregnancy I remember having the thought, "I guess doctors DO know what they are talking about!" I walked with a cane much of the pregnancy (when I walked, that is). I had to see high risk doctors regularly. But it got to the point where I couldn't even leave my house to go the appointments because I was in so much pain. I had to have a large body pillow beside the bed so I could roll on to it and pull myself around the house just using my arms. Mind you, I had a two year old to look after through all of this. It eventually got so bad that at 32 weeks of pregnancy I could barely even move. My doctor told me to try to make it two more weeks. So I had five friends that each took my son one day of the week for three or four weeks. When it got to the point where my pregnancy was risking my ability to walk at all in the future, we decided to deliver the baby. I had dislocated my right hip and after three days of trying couldn't get it back in place. I was risking permanent damage impairing my ability to walk. So we went ahead and delivered our baby girl. And then had a tubal ligation :).
Since then I have struggled with various things: walking, sleeping, dislocating my right knee and shoulder, both hips and my jaw on occasion. I have developed plantar's fasciitis and have a host of spinal and neck problems.
I recently had a work up done a doctor when I noticed I was having tingling sensations and not able to feel my legs. My results and experience can be read about here on my businesses blog. I found that my spine is collapsing on itself and is so out of shape that it is pressing on nerves causing me to lose feeling my legs. My neck is straight instead of curved and it is causing the same problems with my nerves in my neck. A chiropractor has been able to correct the issue in my neck by 50%, but he says there really is no hope for back and it will continue to get worse and worse.
So, I am calling this marathon running business my "mid-mobile life crisis."
My philosophy is that I am going to hurt no matter what I do so I am just going to live. Amidst my chronic pain I have been able to have a family:
Run my own custom window treatments business
travel the world
get a bachelor's degree:
and so much more. And I hope to do more. I hope that by running this half marathon and eventually moving on to a marathon that I will be able to teach my children to live their life even though it hurts. Because at the end of the day you're going to hurt anyway. You may as well make the pain worth it!
I hope we can inspire someone in our journey. Please leave us comments and tell us about your own experiences. We'd love to hear from you!
Or send an email to arizonaeds@cox.net
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