Skip to main content

Cushing's Awareness Challenge - Day 13

Did you know other people are blogging for Cushing's Awareness this month?  This blogger needs your help!

Cushing's with Moxie: Fighting The Worst Disease You've Never Heard Of

Melissa has one of the most viewed Cushing's Blogs!  She is looking for your before and after photos to include in a video presentation about Cushing's.  Go help her out!

I take medication every single day to stay alive.  At 24 years old, it was one of my main complaints after my BLA.  Of course, I had taken medicine before that, even taken medication every day before that, but my life didn't depend on it.

I remember one of my first outings after my BLA, with my mom, sister, and brother.  We went apple picking.  I rarely carried a bag or purse at this time.  I had a toddler style meltdown when I realized I had to carry my bag with me.  It was less about the bag, more about this new consequence of the surgery that saved my life.

After a BLA, you are given prescriptions not only for your daily steroids (cortef and florinef), but also an emergency injection kit in case of emergency.  This is no ordinary pen style injection.  As you can see in the photos below, you have to mix it yourself, pop the top off, then draw it up, then finally, inject it.  Not the easiest thing to do when you are in a questionable state.

I also keep this bag, with all supplies in it. (My mom keeps on in her bag too!) That way, someone who sees my medical alert bracelet, will know what to grab. You can buy this bag here, yes, it is expensive, but you can find coupon codes.  (Just search "zazzle coupon codes")

Now, I mostly keep it in my car, in my purse.  If I am going somewhere for the day, I will take it with me, and I always had it with me at work,  but when I'm running into stores, or to a friend's house, I rarely take it in with me, knowing it's just a few feet away is enough.





This is the bag I keep with me at all times




Alcohol wipe, needle, solu-cortef





Comments

Popular posts from this blog

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having the…

Cushing's Awareness Day

Over the past 8 years, I have spent a few Aprils blogging every day for Cushing's awareness.  I will not be blogging daily this year, but don't want to let the month go by without spreading some awareness!


April 8th is Cushing's Awareness Day because it is Harvey Cushing's Birthday.  Harvey Cushing is the father of modern neurosurgery, and he also was the first to discover Cushing's Disease in one of his patients.  You can see a drawing of his patient (Minnie G) in many text book articles about Cushing's.

Cushing's Awareness Challenge - Day 29