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The Full Story-
My cushing's journey

Being a rare disease Patient Advocate for over 15 years, it’s hard to believe I’m now writing this as a Rare Disease Patient. *PS- Please disregard my typos ;) haha

 

It’s so interesting to think about my journey to diagnosis, because it came quick and fast… a lot different than most. And oddly enough, I ended up diagnosing myself after an accumulation of symptoms and randomly researching “anxiety in dogs” (not correlated). The whole diagnostic journey lasted a little less than a year. 

 

Let me preface this with, I originally diagnosed myself with PCOS (Polycystic Ovarian Syndrome) back in 2018 due to my Genetic Counseling background, some adult acne and slight hirsutism (hair growth on lip and chin). I knew I did not have cysts on my ovaries, due to being an egg donor for a handful of years and I was diagnosed based on elevated testosterone. But, I went on to live my life and just managed the acne and hair growth with some meds and topicals from the dermatologist.

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THE JOURNEY

It wasn’t til about January 2023 when I noticed some slight changes in my weight, mainly in my face. I just couldn’t come to terms with the fact that my face was “getting fat,” and the rest of my body remained somewhat normal. Then, not to soon after I also started rapidly gaining weight in my abdomen area, despite the fact that I was actively running, working out, going to yoga and maintaining a healthy diet. I gained ~30lbs in 2 months. At the time, I blamed my now fiancé, Chris, because we had just recently started dating and he loves to bake sourdough bread and make pizza…Lord help me, both are my kryptonite! I started thinking to myself, well… I guess I now fully understand why people start gaining weight after they find their significant other! Nonetheless, my stomach continued to distend to the point where people started asking me if I was pregnant… and I felt like I was! Oh, and speaking of pregnancy, my emotions were ALL OVER the place. One day I would be happy and enjoying the day and in a second I would flip to crying..I couldn’t tell if they were tears of joy or sadness, but what I could tell was that I was unable to control them. And I experienced panic attacks for the first time ever. Emotional, embarrassed, and bloated, I thought it had to be gut related. I went to a gastro to see what might be going on, but no dice (other than a colonoscopy…and oh how fun that was). It wasn’t too soon after that, when I started to get recurrent UTIs and randomly broke my foot, with no trauma caused. My energy levels were going quick and I went from running marathons to having to ride a bike since my leg muscles were losing strength and atrophying. Something was off, and thankfully I found a PA who was on my team to try and figure it out. We started going down various rabbit holes of testing: bloodwork, sonograms, CTScans, echocardiograms, X-rays, bone density scans, you name it, I took it. We were grateful to have ruled out certain types of blood cancers, bowel cancers, bone cancers, heart abnormalities, sepsis, etc, and all I was left with was a diagnosis of diabetes type two, osteoporosis, and a whole lot of uncertainty. 

 

One night my dog, Sampson, was panting like crazy which I attributed to anxiety. I began to google search “anxiety in dogs” and this is when I stumbled upon Cushing’s Disease. Reading through the symptoms of Cushing’s in dogs, I started aligning some of the symptoms with my own symptoms… I not too soon after, came across a blog from a young female who had Cushing’s Disease and I couldn’t believe my eyes…

 

“Moon Face” (swollen face), excessive weight gain (in the abdomen area), recurrent infections, brittle bones, mood swings (anxiety and depression), type 2 diabetes… oh and then all of the other miscellaneous symptoms that I just thought could be attributed to life and my environment… night sweats (of course, live in a humid place), heart palpitations (well I ran plenty of marathons, surely my heart rhythm might go out of beat every once and a while), easy brushing (anemia runs in my family), excessive thirst (YO girl grew up in AZ), hair loss (well I barely brush my curls, when I shower chucks of hair come out) purple stretch marks on my legs (maybe poor circulation from sitting/crossing my legs), brain fog/poor memory (mmm well my spirit animal is Dory from Finding Nemo so)… the list goes on. But yet, I still "looked" normal. 

 

THIS WAS IT. EVERYTHING MADE SENSE. I HAD CUSHING’S DISEASE

A condition has a laundry-list of symptoms caused by excessive cortisol (stress hormone) in the body.

 

DIAGNOSIS

I immediately took this to my endocrinologist and told him to test me. He said I don’t present as the typical “Phenotype” (observable characteristics) as his Cushing’s patients and he did not think that I had it. First off, I said, don’t you “Phenotype” me sir, I have a background in genetics and throwing around big words like phenotype does not intimidate me. Also, phenotypes evolve with time and the environment and I was not ready to “wait” to see and potentially get to the point where I “looked like his Cushing’s patients.” Reluctant to test, he first sent me off with blood cortisol, then to 24-hour urine test, then to saliva. And sure enough, my cortisol was through the roof. Next step was a brain MRI which identified a 4mm x 6mm benign tumor on my pituitary gland. And I also found out I have Chiari malformation Type 1... gotta love those secondary findings. But that's irrelevant to Cushings. From there we had to perform a IPSS (Inferior petrosal sinus sampling). This was to confirm my Cushing’s was caused the tumor on my brain and not other endogenous (within the body) tumors OR exogenous (caused by outside steroid use). It was confirmed, on November 2nd, 2023 I was diagnosed with Endogenous Cushing’s Disease. 

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SURGERY

So then what happens from there you might ask? First and foremost, I had to get a better care team. I was blessed to be connected with Barrow Neurological Brain Institute in Arizona. My new care team consisted of Dr. Yuen (Endocrinologist), Dr. Little (Brain Surgeon), and Dr. Rehl (ENT). So after that was established, it was time for brain surgery. Dr. Little and Dr. Rehl were tasked to remove the 4mm tumor from my pituitary gland through a procedure called an Endoscopic Pituitary Tumor Surgery. On December 11th, 2023, Dr. Little and his team went through my nose and broke a little piece of my inner skull to reach the tumor, so I had no visible scaring, but that did not mean the recovery process was going to be easy. Praise the Lord for the brilliant and talented team at Barrow who were successfully able to remove my tumor and put me in “remission” of Cushing’s Disease. 

 

Immediately after surgery I was put into ICU to be monitored for the evening into the next day. Words cannot express how much gratitude I had for Chris during this time. He was there from start to finish, comforting and supporting me all the way through. Despite the continuous nose bleeds and the soreness/swelling of my face, I felt pretty good after the surgery. I told the doctors that I don’t feel like I’ve even been able to take a full breath through my nose in my entire life, and I jokingly told them that if the surgery failed, at least I got a septoplasty out of it free of charge. Outside of the physical trauma caused to my body, I would argue the emotional stress/anxiety was by afar the worst part of my recovery. The “what ifs” and “is this normal” and “what if I go to sleep and don’t wake up” after surgery could have taken me out in itself. But there was a moment that I had, where God spoke to me and I heard him say “you are safe.” I looked around the room and saw Chris sitting there, my nurses outside my window, all of the machines I was hooked up to monitoring me… I had this rush of peace take over my body and in that moment, I felt so much gratitude to be alive, breathing, and in a hospital where if anything were to happen, I was in safe hands. 

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RECOVERY & remission

I was released from the hospital the next day and on my way home with a little napkin mustache taped under my nose to collect the blood that was still coming out! This was going to be the norm post surgery and it was my job to maintain the cleanliness by performing nose rinses every day for the next six weeks. Oh and to insure that the blood did not pool in my nasal cavity, I had to sleep at a 45degree angle for those 6 weeks as well. That was fun. I always would pride myself at being able to sleep on airplanes, but this was next level. I was also restricted to low activity, no “bending over,” and if I had to sneeze, I had to sneeze through my mouth. I wasn’t technically on bed rest, but seeing how active I used to be, this was extremely challenging for me and was one of the hardest parts of my recovery. 

 

It was during this time that I knew I needed to get connected to a support group and individuals who were going through the same thing so the “is this normal” “do you feel this way too” helped calm some of the fears and anxieties. I also got connected with a local Cushing’s patient after listening to her podcast and realized she lived close to me in AZ! I even used her podcast to save myself from explaining Cushing’s to my friends and family and referred them to her podcast since she did a great job at explaining all of her symptoms! With the support of her and Barrow’s Nurse Navigator, Terry Maxwell, RN, BSN, I was able to feel a lot more comfort and peace during my recovery process. 

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6 weeks went by, then 3 months and I got clearance from my doctors that I’m in “remission” and I’m continuing to heal according to the plan! Now there are a few things to note… Although I’m in remission, there is up to a 50% recurrence risk that the tumor could grow back. Also, I’m taking hydrocortisone, which is supplementing the cortisol that was lost once the tumor was removed. According to Dr. Yuen, we are still waiting for my pituitary gland to “wake up” and start producing its own cortisol. His plan is for me to be on it for the next 1-2 years. So what does this mean? It means that every morning and afternoon I’m required to take my medicine and if I don’t I could go into Acute Adrenal Crisis, meaning my cortisol is too low and I could experience being light headed, abdominal pain, sweating, nausea, vomiting or even lose consciousness. Oh and if I’m ever under stress (sick, big presentation, getting married ;D ha), I have to “stress dose” to meet a higher level. I’m basically playing the role of my pituitary gland. Crazy.

 

Overall, my recovery has been pretty smooth. I’ve lost a lot of the weight I was putting on, my anxiety/depression has gone down significantly, I’m slowly getting back to a lite workout routine, my skin doesn’t bruise as easily, I’m no longer battling adult acne, my excessive thirst days are over, I’m sleeping through the night, and I’m feeling somewhat “normal.” I’m still battling some fatigue, which comes and goes. There will be days I have energy and others that I don’t. I’m experiencing some significant joint pain, where I feel like I have bruises on my hands and feet, which makes it hard to walk or do things with my hands. With my body, the only way I can describe how it feels is it feels like that sore feeling you get after the gym/hard workout... but all the time. And there has a been a relentless rash that has been causing excessive itching to the point where I’m bleeding. So even though I might "look normal" or "seem normal," this is how I feel every day. I'm praying these symptoms resolve as time goes on, but for now, this is what my "new normal" is. 

 

But the one thing I’m struggling with the most with is this idea of being “normal.” I believe I unconsciously built my identity around a lot of the symptoms of Cushing’s Disease. Cushing's was like my "superpower" and changing that narrative is a struggle. I’m no longer “the fish” that drinks tons of water. I’m no longer the “energizer bunny” who runs on 5 hours of sleep, managing to workout, get work done, see my friends, work on a fundraising project, and somehow manage to find time to paint my nails. I’m no longer this person who was “always healthy and fit.”And I forgot to mention, my work/career life has also been put on hold due to all of this, so my work identity has also been impacted. There was an aspect of my assumed identity that people would say “I have it all together.” … well even if I felt like that before, the harsh reality of my life not being “all together” and “being normal” has really hit me hard, but I'm learning a lot...

 

life lessons
  1. Prioritizing My Health- Sometimes it's hard, because outwardly I may seem normal, but there are days that I don't feel the best and it's hard to explain that to people. But prioritizing my health doesn’t mean I’m being selfish or lazy. It means I’m taking care of the body that God gave me in order to fulfill his purpose for my life.

  2. Accepting The Process- Adjusting to this “new normal” will take time. I need to allow myself the time to heal both physically and mentally. This does not happen over night and I will need patience in the process. Time will heal and it's important to give myself grace. 

  3. Awareness is Key- The fact that Cushing's is somewhat of a "hidden disease," it makes sense why it's considered a rare-disease and is significantly under-diagnosed. My mission is to continue to advocate for the rare disease community, but focusing on Cushing's is a new calling that I'm committing myself to through sharing my story to increase support and awareness. See how you can support me on my mission below.

  4. Knowing My Body, Being my Own Self Advocate, and Loving Myself- This disease has not only humbled me, but it has taught me a lot about understanding how my body works and who I am. I’m learning how to be “in tune” with my body and when something is wrong, I ask the questions. When I’m in need of support, I ask for help. When I ask myself, who am I? I remind myself, Cushing’s is a part of who I am, but not ME as a person and I love the person I was, I am, and the person I am (Be)coming. 

 

As I continue on my path to full recovery, I remind myself that despite all that I have been through with my Cushing’s journey, I’m grateful to the lesson it brought back to me from my best friend Saulo who had leukemia, and that is...

"All the bumps along your path come together to create the beautiful masterpiece, your life." 

Support
 

The Cushing's Support & Research Foundation

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