Hope Rising

On Saturday night, I attended the CD release party of a good friend of mine.  Her CD is entitled Hope Rising and each song represents a journey being traveled by someone with a chronic illness.  Most of the stories depicted in the songs are about someone who has Mitochondrial Disease.  I saw many of my friends at the party  and while we live pretty close together, we don't see each other very often because we are busy with our own lives involving doctors, illness, work, school, etc.  In addition to some of the proceeds going towards the United Mitochondrial Disease Foundation (UMDF), they will also go towards the Immune Deficiency Foundation (IDF) , a group dedicated to supporting disorders of the immune system.  Both of my friend's children have immune deficiencies and require immunoglobulin infusions.

Me along with two of my good friends.

(I clearly thought I had to bend backwards so my head wouldn't be cut off.)

As far as things go with my Child Life practicum/internship applications, I am still working on the essay.  I have worked on it since I gave it to a friend who has gone through a Child Life internship, but I don't feel like the essay is me, I don't feel accomplished yet.  This essay is a large part of my application since the rest is recommendations from CLSs I have worked with a Children's Hospital Boston over the years.  On average, these applications four parts and incomplete applications are not accepted so I cannot mail anything until I finish this essay.  Tomorrow I will make envelopes by writing the addresses and filling them with all the things I have so far, like my transcripts and recommendation letters.  I also need to call Boston Medical Center once more since I haven't heard from them yet.  I should also email Connecticut Children's and Cohen Children's in NY just to let them know I will send them my materials soon.  

Progress is currently on pause with my Baclofen pump.  My Spaulding doctor was away this week and will be on vacation this week.  (I was only aware he would be gone for one week.)   I also can't go to PT or OT until 12/2 because long story short, there was confusion and they won't have my chart until then.  In addition to the Hope Rising release, Saturday was also the two month anniversary since my pump was implanted and unfortunately I haven't had marked improvement.

Also, my cousin Stephanie recently published her first book of poetry, Whispers in the Soul.  Another friend is making Christmas ornaments to not only benefit Mitochondrial Disease research, but more importantly to raise enough money to retain her current lawyer so her third child can be returned to her care. Canada thought she was making her child sick, not Mito.