Thursday, April 15, 2010

Wayne and Jenny: full resolution, no latency!

Guess what?  Last week, Jenny (Starbucks Addict), Wayne (AcromegalyCommunity), and I met up in person!  Jenny and I met for the first time back in January but Wayne and I had only talked over video chat before.

I immediately felt so comfortable and open talking with them.  We had dinner together, and it was such a relief to be able to talk about this disease, this life, without having to cushion things or explain.  We just had an understanding.  And we didn't just talk about acromegaly the whole time- we talked about our lives like old friends do when they're catching up.

Being able to converse in real time was so fantastic - email, chat, and even video chat have a delay between responses which you don't realize until you're sitting in person with someone.  As wonderful as it is to have an online community of acromegaly friends, meeting in person is important too!  I hope that there will be many more opportunities for us meet up again, and I hope that we can gather more people to join us as well.

Sunday, April 11, 2010

Thursday, April 1, 2010

What Helps? (Part 3)

Hello Everyone!  I hope all of you are doing well!

I wanted to share a little tip I've found to be useful for managing my acromegaly.  Many of you are probably doing something similar on your own, but in case you aren't already you should consider keeping an accurate calendar of:
  • How you're feeling every day (symptoms, appetite, energy level, etc)
  • Other things going on in your life (stress, exercise, diet) that may have an effect on your acromegaly
  • When you are due to receive your medication/treatment and what dose (I keep track of the date and which side my Sando shot should be on), and if it varies, when you actually get your medication
  • When your prescriptions should be refilled and picked up
  • All appointments: Doctors, MRI, colonoscopy, tests 
  • When you had blood draws, and then update the calendar entry with the lab results
Beause there's simply to much to try and keep in your head!  I have a special calendar specifically labeled HEALTH where I track all of this stuff.  I keep my calendar online through a free service (most email accounts offer this), which even allows me to get notifications and reminders if I want.

Are there any other bits of health info you think should be kept on this calendar?  Do you have your own tip to share?  Please let me know in the comments!