Sharing the lessons along the way…

4 166/365: Simple

(Photo credit: Jer Kunz)

In the life of The Tawny lately, much is happening from week to week.  I share it as it happens, or at least try to keep you caught up weekly.

I do realize if you miss a few posts, you might have no idea what is happening or no idea why something is happening once you stop back by, so I thought I would get into the habit of giving you a brief catch-up post.

This will be the first of many, as I anticipate sharing a lot with you over the next several months.  This one will cover part of May and all of June.  You can find more details by clicking on the hyper-linked words within the post.

I have embarked on a journey I never would have expected to willingly take—ever.  I am taking it with you and sharing with you as transparently as I know how.  It might not be pretty.  There will be some growing pains, but there will be a great deal of growth.

In May, I made a decision to have the intrathecal baclofen pump removed.  I considered many factors carefully before making such a huge decision, as the pump’s delivery system manages my motor neuron disease symptoms really well.

I have spent years very attached to my first pump and this second one has caused much more pain and has created many activity limitations.

In order to remove the pump, the dose has to be slowly reduced.  Right now and until 7/16/13, the dose is 15% reduced.  I can still drive a car and am walking with a cane.  I do see distinctive symptoms returning, which are primarily involving my left lower leg and foot.

I have built a toilet paper tower in my bathroom, have all the assistive equipment I could possibly need for this journey, received my very own pair of big girl panties, and am vacillating between fascination and freaking out as the symptoms of my illness return.

Now that you are caught up in a nut shell, are there other things I haven’t shared that you will be curious about as we move forward from here?


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