Thursday, April 22, 2010

Update from Mayo...we won't ever have the answer I came for

Greetings from another day at the Mayo Clinic. I tried to come into today in a better place than I was last night, I knew that mood was not serving me well. So I tried to give myself a pep talk and be ok with it all, I was doing an alright job with that, but hit another road block this morning.

When I arrived this morning they gave me a copy of my records that the hospital in Syracuse had finally provided. In great big bold letters on the fax cover page it said "THE EMG LAB KEPT THEIR OWN RECORDS THEN AND DO NOT KEEP RECORDS AS LONG AS WE DO AND WE HAVE NO COPIES OF THE EMGs".

In other words, the key data needed for comparison is no long available any where and we wont be able to do the comparison. So the question I came to answer will never be answered.

My reaction, I still think I am somewhat in disbelief (I keep re-reading the piece of paper). For all the possibilities I considered, finding out it was better, worse or the same, I never considered we wouldnt have any answer or any ability to get the answer.

I am trying VERY hard not to slip into seeing this whole experience as a waste and am pushing myself to finish out all the suggested testing, so at least we have a baseline for the future and maybe will have some answers to other questions, but would be lying if I said I was anything other than crushed at this turn. I had built my nerve up so long to find this answer and now to know we can never know is just heartbreaking for me.


  1. That really does suck that you have nothing in writing to compare with! BUT!!! You yourself can FEEL the difference....that's what started this to begin with. So yeah, it does suck, but keep your head up and keep on keeping on, girl!! Of all the folks I know, you can do this!!


  2. Did you read my FB comment on ur post from last night? I am here for you and have experienced a lot of the same frustrations of "not knowing" Lisa Snead

  3. Pam.... I know quite a bit about Medical Records and they get passed along a lot more than most of us know about it. Certain records are required to be retained for a certain length of time. Try checking with the insurance carrier you had a the time to find out if they have/had a digitized version of your EMG results......Also, other doctors, may have received copies, if you saw any that were outside of the hospital system.... not trying to get your hopes up or anything, plus, I am sure you have exhausted all of your possibilities, but you may have to go "outside of the box" on this one..... Good luck! Tara

  4. Dear Pam,

    Yesterday is history; tomorrow still a mystery, but TODAY is the present you give to yourself.
    Look back at your own posts from before and during Israel. Look at how you have grown and all you can do that you could not do a few short months ago.
    Then, get your butt back to the gym and your trainer. Look forward, not back. Celebrate all that you are and all you can do. Then, to borrow a phrase from Nike - just do it!
    You are you, and just like each one of of us you have your unique strengths, gifts, needs,a nd imperfections. You also have the power of choice as to how you accept them and celebrate your strengths.
    This week we read parshat Kedoshim. We are reminded that we can be holy - not by being perfect but rather by being the best of who we are and trying our best to do the most good in this world that we can. You can only do that if you first see yourself as good and capable. No one says it will be easy; the best stuff in life usually isn't.
    You can do it.


  5. Sending love and good thoughts your way, Pam. You are surrounded by an amazing community of caring friends, and Iris is right, you have come a long way. That is YOURS. Know what you know about the improved and broadened world you now inhabit and don't let your fears diminish it. xxoo Ann

  6. Not being able to do a comparison and answer the question you came in the first place for, is sucky... but, "you" know what has been changing (for the better) with your body. You know what has improved and where feeling has returned.
    I'm sorry that your journey has taken you to a place where now science can't give you something tangible to verify and document the changes - but what it also isn't doing, is giving you anything to deny the changes.

    I think it's a Matryoshka :) - You are opening one doll only to find another to open and another, and another...