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

amazon audible

Popular posts from this blog

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…

Cushing's Awareness Challenge - Day 12

Today's post is a little bit out of my comfort zone. We're going to talk about weight.
One of the most common symptoms of Cushing's is weight gain.  Some people only gain 30 pounds, some gain hundreds.  I always have a hard time quantifying the exact amount I gained because I was a teenager, or even a young child when I first had Cushing's symptoms.  My best guess is about 150 pounds, only because that is close to what I've lost after treatment.  
When you weigh almost 300 pounds, people treat you differently.  I know this, because I've also seen how people treat me now.  
I was obese, due to Cushing's, throughout college. In my opinion, this is one of the most difficult times to be heavy. My first year of college, I was often left out of plans.  My two roommates were very close, and I always felt like the third wheel.  One of them even left a letter she had written to a friend out for me to see.  It was one of the cruelest things I had ever read.  She was wis…