The Ugly Disease: My Story

The deepest form of betrayal I've experienced is from my own body. Crazy, right? The one thing you're supposed to be able to count on no matter what: yourself. Am I being punished for something? Is this my fault? Am I just not taking care of myself properly? The people closest to me seemed to have valid reasons for the changes I was experiencing. "Your relationship is doing this to you" "You're just stressed because of the interpreting program" "You're probably gaining weight because your metabolism slows as you get older" "You're just growing into your 'grown woman' body" "Do you exercise? Maybe you should start." They all seemed to make sense, but my intuition told me something else was going on.

My changes started in late 2017. The first change that I really took notice of was putting on weight. It started in my face. By mid-2018, I felt like a stranger in my own body. My face started looking like a pumpkin, I started looking like I was 8-months pregnant, and I started developing random bruises. Now, I shy away from people I haven't seen in a while because I am hardly recognizable. Who am I kidding, I shy away from anyone who has known me pre-disease Brandy. It's not the best feeling in the world when your 7 year old cousin looks at you and says, "you look...different.." We all know kids have zero filter. I can't tell you how many times I've gotten a curious look followed by a "...Brandy....?" Yeah. I carry a blanket of shame because I hate when people look at me. This is very odd coming from someone who has always loved the limelight (singing for people, being a social butterfly, etc.) I am now borderline anti-social due to shame in my appearance, spiraling anxiety/depression, and incredibly low self-esteem. I feel like I've allowed my current state to take away so many opportunities from me. I've said "no" to so many things that I wanted to say "yes" to because of my shame. I am confident in who I am, and this is NOT me.

I ended up doing what everyone says not to do: research and self-diagnose. And no, I don't mean checking WebMD where everything points to, "yeah, you're gonna die." I had to do something! There was no way that I went from maintaining 120-130lbs my teenage/young adulthood life and then BOOM I'm 170lbs two years later without changing my lifestyle? NAH. I was on a mission to figure out why my appearance was changing so much, so I decided to get my blood-work done to test for hormonal imbalances. With all of my symptoms, I narrowed down my options. I was certain I either had PCOS or Cushing's Disease/Syndrome. I went to my primary with my concerns, and she suggested that I just needed to live a more active lifestyle (go-figure) but she went ahead and ran some blood tests for me. Hypothyroidism? No. PCOS? Nope. BUT, my white blood cell count came back abnormally high (March 11th, 2020) so this raised a concern for my doctor. I ran a second blood test with another high WBC result (April 29th, 2020) so I was referred to a hematologist, got more blood work done, and came back cancer free (yay) but what was wrong with me?! Anyone who has tested or is being tested for Cushing's Disease/Syndrome knows how dreadful of a process the testing is. We go through so many tests and doctors! It's ridiculous! Anyway, I was then referred to an endocrinologist and...

June 17th, 2020:

Adrenocorticotropic hormone (ACTH. Hormone that influences production of cortisol hormone)

Normal Range: 7.2-63.3

My Range: 110

Cortisol (Hormone responsible for a plethora of things in the body. I'll detail into this in another post)

Normal Range: 6.2-19.4

My Range: 27.8

June 22nd 2020:

Dexamethasone Suppression test (Pop a pill at 11:00pm, draw blood 8:00am, hope your levels suppress below .5)

Normal Range: .5

My Range: 14

July 5th, 2020:

24 hour urine sample (Pee in a container for 24 hours to measure cortisol levels. GAG.)

Normal Range: 6-42

My Range: 151

NOW WE GETTIN' SOMEWHERE!

July 14th, 2020:

MRI of pituitary gland (Pituitary gland is the "master" gland located at the base of the skull, underneath the brain, and behind the bridge of the nose)

My Result: Confirmed Pituitary adenoma (tumor) on my right side.

All of my results are consistent with Cushing's Disease, just as I suspected. Moral: Take your health into your own hands. If you feel like something is "off" with you, don't let your doctors brush you off. If you need to, get a second or even third opinion. Your health is important! Take care of your body and it will take care of you.

Soooo what's next?

I thought after finding a brain tumor, they'd stick me right into surgery. You cute, Brandy. You. Cute. I had a consultation with my surgeon on July 29th, 2020 and it did NOT go the way I wanted it to. He told me that he wanted to make sure that the pituitary tumor is indeed the source of the overproduction of ACTH before they go diggin' all up in there to get it out. In order to do that, I need to undergo a procedure called an inferior petrosal sinus sampling (IPSS). Basically they are going to stick two catheters through my groin area and snake them up my veins into both sides of my pituitary gland to measure the ACTH levels (woot woot). My consultation for this procedure...yes...just the consultation, is on August 31st, 2020. I've nearly been waiting a month for them to explain to me what I already know.

1. IPSS consultation (8/31/20)

2. IPSS procedure (unknown)

3. Surgery Consultation (Unknown)

4. Surgery (...you guessed it... unknown!)

So to give some perspective here: I've potentially been dealing with this disease since 2017. I started testing in March of 2020. It is now August of 2020 and I still don't know when my journey to recovery is going to start. This is not uncommon for us "Cushies;" sometimes people take over 10+ years to get diagnosed. I just want to be my normal self again. I am grateful that I ended up finding the problem so that I can fight through it. If you're reading this, and you're fighting your own battles (whether it be Cushing's or anything else), let's fight it together. LET'S GOOOOOOOO!

With Heart,

B