Life with Chronic Illness

I was sooo tired at the end of the day yesterday that I just crashed without blogging.  Ellen, my counterpart for this trip, has gone home for work tomorrow so I am on my own for a day before going home.  So far, I think it's been pretty good and a lot of people have stopped by our booth to talk to us.  We've given out a lot of reading material and diagnostic and testing guidelines, and of course business cards and newsletters.  (My story is in the CSRF newsletter this month!)

I've eaten my fill of frozen yogurt from Merck, who is right in front of us with that machine all day, and have a few stops I would like to make before the end of tomorrow, but I'm not sure if it will be possible now that I'm the only one.

I also got the opportunity to go to a presentation today given by an endocrinologist from Case Western on Adrenal Insufficiency.  The huge room was full, there was not an empty seat to be found, and I was surprised to not learn a single new thing!  They dis…

I'm at the airport waiting for my flight to Houston.  You may be thinking "WHAT is in Houston?" The ENDO 2012 conference!  I'm going to represent the Cushing's Support and Research Foundation at their exhibit booth.  I'm excited for the experience, and as you may know, not too excited for the flying to and from part.  The good news, is already I can spot some endocrinologists that I have seen before so I know I would be in good hands if something were to happen (which it's not).  
I have downloaded the ENDO app for my phone and found that we will be in booth #1829.  I got to bookmark booths that I would like to stop by, as well as the food and relaxation booths.  I am going to try and blog as often as possible while I'm there, probably at the end of each day. 
We will be boarding soon so I should pack up and get ready!  Talk to you from Houston!

As I rushed to post in our little BLA support group as soon as I could use my computer, this post came up with a TED talk by a woman who had a massive stoke.  She later had surgery to removed a golf ball sized clot in her brain and had 8 years of rehab after her stroke, but as she was having a stroke she was aware of that.  I never knew that when one area of your brain is oxygen deprived because of a stroke, EVERYTHING ELSE is working.  I knew what was happening, what I wasn't able to do, and why.  I recognized my family as they came in, first my mom, then my dad.  I showed people that I knew who they were by pointing and saying "Yes, yes, yes..." over and over again.  It was one of my 3 words I was able to say.  Yes, and thank you.

I loved this video because she talks about drifting from her perfectly functioning right brain, to her damaged but still hanging on left brain.  My very very mild stroke was on the left side of my brain, leaving my speech and right arm impai…

Yet another setback.  I didn't see this one coming at all.  I was at a conference that I go to every year, and on Saturday I woke up with a headache.  Nothing big, just a little annoying headache.  I went through the day, even calling my endocrinologist on a weekend to get a refill for a medication I forgot.  After dinner, I was walking back to the main building and felt a little off. By the time I got back, I was slurring words and having a LOT of trouble with word retrieval.  This progressed until I had no speech that was intelligible and my right hand felt all tingly and numb.

My friends mom is a nurse and she was there to give my my injection of solu-cortef and Andrew called 911 (I think he did, someone did).  They took me here, to Mass General, where I was treated in the ER with tPA which breaks up clots that cause strokes in the brain.  I had scans, tests, and more tests, and finally as I was regaining some speech they sent me up to the Neuro-ICU to stay.

 Through the night…