30 weeks of Marathon training.

just a spot to write about the next 30 weeks….of running.

So what’s up with this back injury, some answers, some questions

So.  Every time I visited with the Coach since injury,  he repeatedly said that he really couldn’t understand how I got injured.  Indeed.

I, myself, was a little confused.  I have been having some back pain over this training cycle and I admit I knew that I was probably going to have to go see someone about it, but my goal was to get through the marathon and then do that.

Seems life had some other plans for me.


A physician friend suggested I look up this odd syndrome Ehlers-Danlos syndrome.  Kind of an odd suggestion.  I mean, I am an adult, I kind of figured if I had an unusual, heritable genetic problem, I would have known about it.

So I looked it up and read about it. It was a bit disarming. Depending on which article I read I vaguely resembled the symptoms, or I could check off one by one the traits and symptoms.  Clearly we are looking at the hypermobility type not the vascular type.  I’m fairly sure with the cardiac complications from the vascular type that I do not have that.

I discuss this with my Mother, who confirms that she has similar traits and symptoms, and that her father also had them… interesting.

So…Next step I thought would be simple.  Make an appointment with a Genetics specialist in Connective Tissue disease.  Wow.  There are really not very many of those people around. So.  After some discussion with myself regarding if this is really important or not, I email several contacts from the EDS page.  I get a few emails back.  one MD wants to test me immediately. I note he owns the genetics lab where the testing would be done.  He is in Boston.  he states he can not recommend anyone in the entire great state of Florida.

I get a call from a Doctor in PA.  He is abrupt and rude, stating that if I have not had chronic dislocations, I must not have the disease.  He got very upset when he found I was a nurse and that a physicians had recommended I might have the syndrome.  Suddenly he wasn’t sure of himself anymore, lots of backpedaling and discussion of what my physician friends had seen to make them think this or that.  I told him that I must have just been going overboard and hung up.  He was a bit full of himself, and explained he gets lots of emails each week and “I give everyone 5 minutes of my time”. Charitable, but actually he really wasn’t that helpful.

Eventually I contacted of all things, a hand surgeon, who was very helpful and explained some things and gave me a book title for reference so I can investigate further.  He took time to exchange a few emails with me, so I really give him “props”  since I explained to him I had a herniated disc in my back…and not in his area of speciality. The hand surgeon seemed to think I met most of the criteria, but warned against going full throttle to get a “diagnosis”.  He explained that some people have trouble getting a PCP, or have other issues after a diagnosis is confirmed, prior to Obama Care this kind of a diagnosis would be a death knell to changing insurances.  He reminded me that since there is no prescribed treatment, having the diagnosis on paper really won’t make a difference.  I am still stuck with the joint laxity, the easy bruising and scarring and other things.

My Coach initially was a little skeptical.  He said he would not have pegged me for Ehlers-Danlos. After thinking about it for a bit he relented saying he had never really connected my flexible ankles to my back or my hip problems. He then said, “You sure were amazing to run all those races with that problem….at least you like to swim”  We both got really quiet.  I asked him if he thought I’d ever get back to running.  He got really quiet and then very carefully said, “Yes I think you can get back to running again.”  How much on what surfaces is still to be determined, and I’ve been told to really not think about it at all.

But of course what else can I think about.  I’m unable to ride a bike, swim, walk, run, weight train?  What else am I going to do with my time exactly?


This seems to be my future.  We will see how this all develops.  At least for the moment, I am having less pain, and moving about a bit better. I am of course reminded through this that…

Jeremiah 29 11

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