My life with Congenital Panhypopituitarism

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My name is Sunshine, but most people just call me Sunny. I'm a dorky 25 year-old girl who likes drawing, playing video games, and attempting photography. Oh... and I also have a rare, chronic disorder known as Panhypopituitarism. I am not my diagnosis, but it's a part of me I can't ignore. I've had this since birth, and it's not going to go away (no matter how much I wish it would).

So... what's this long, confusing word of a diagnosis?
To be completely honest, I really didn't know exactly what Panhypopituitarism (PHP) was until I started looking into it just a few years ago. It pretty much just means my pituitary gland doesn't work properly. In my case, my pituitary gland was injured because of Optic Nerve Hypoplasia and Septo-Optic Dysplasia (SOD). It damaged my pituitary gland by compressing it with a part of the inner workings of my left eye, and my hypothalamus is also slightly deformed. Sadly, that's all I know about the ONH/SOD. Anyway, thanks to the damage to my pituitary gland, it hardly works at all. The pituitary gland is in charge of telling your body to secrete hormones, how much to make, and when it should be made. Unfortunately, mine has very, very little function. Because of this, I have to take medications daily to keep my body alive and well. Despite the treatment, though, I do have rough days when my symptoms show.

The doctors knew there was something wrong from birth.
I had a very rough birth. According to my dad and grandma, I came out with my head compressed so much it looked like a cone! Fortunately, it went down to a normal shape! Aside from that, I was very jaundiced. Worried, doctors kept me in the hospital for a couple of weeks to monitor me. I guess some time during my stay, they did a scan of my brain. They told my parents that my pituitary gland was so small, it might as well not be there.
We didn't find out until I was in about the fourth grade that I had this serious diagnosis. My dad and step-mom could tell I wasn't showing any signs of puberty, so they decided to get me looked at by a specialist. We went to Riley in Indianapolis and met a great Endocrinologist. He ordered a "stim test", which prompts the pituitary gland to make hormones, then blood tests show results. Mine showed that my pituitary gland was barely functioning at all.

I was then signed up for all kinds of hormone replacement medications.
My endocrinologist got me started on a cocktail of pills daily, occasional steroid shots to get my body started, and growth hormone shots every day. The steroid shots hurt. A lot. I remember crying every time I had to get one of those.
After being on the growth hormone shots, I grew tall enough to not be classified as a dwarf, which was our main goal, really. By the time I grew to a slightly below-average size, I asked to stop treatment. Those shots were beginning to hurt more and more every day. Looking back now, I know it's because I didn't rotate injection sites as much as I should have. After much protest, my endocrinologist agreed to let me stop. He continued to try to persuade me to stay on the treatment every time I saw him, but I was young and stubborn.
Eventually, it was time to kick-start puberty. I was put on birth control to get my period going, which was very late for me. I think I was about 17 or 18 when it started. I still have to take hormone replacement tablets to keep having a period, unfortunately, but at least I always know when Aunt Flo is coming for a visit!

High school was so hard.
Despite having a diagnosis like PHP, my parents and I never really looked into it, so we had no idea about the fatigue that comes with it. The fatigue really hit me harder and harder the older I got, and eventually I was having a hard time just keeping my head off my desk at school. I was just called lazy because of it. Naturally, that wasn't good for my self-esteem, but nobody could have known about ALL of the symptoms associated with this diagnosis, so I don't blame anyone for being ignorant of the fatigue. I didn't even know. I thought I was just afflicted with this terrible laziness trait, and I became depressed. I stopped trying, stopped caring. Wasted a few years doing nothing because I felt so worthless. If it weren't for falling in love with my now-fiancee, Justin, I don't think I would have had the will to try. Thanks to him and the support of a few good teachers, namely the people in charge of the credit recovery class, and my very supportive Japanese teacher who took me under her wing, I was able to graduate! I owe all of them so much! (Sneaking coffee to school helped a lot, too. )

Work was even harder.
I wasn't able to handle any kind of work until I got back on Growth Hormone injections back in 2015. After being on the shots for about six months, I felt good enough that I thought I could handle a job. When I applied for work at a local grocery store chain, I warned my employer that my health was not the greatest, and I may not be able to keep working long-term. Despite the risk, he agreed to hire me. I worked as hard as I could, and I really enjoyed my job. Unfortunately, about four months later, I had my first adrenal crisis. This put me in the hospital for about 24 hours. They wanted to keep me longer, but I had crappy insurance at the time, so I left early.
Unfortunately, my health never fully recovered after that. I tried going back to work, but I kept getting hit with really bad bouts of fatigue and vertigo that made it impossible for me to remain at work, even just sitting down. It got to the point where I was calling off work so often that I felt like I was a burden to my employers. I put in my two weeks notice, and quit.
It has been a struggle ever since. When I first quit my job and made the decision to seek disability, I was faced with judgement from people close to me who didn't understand the severity of my condition. What made it worse is the endocrinologist I had at the time didn't believe ANYONE should get on disability, so he refused to help. I sought out a second opinion from a new endocrinologist and found a doctor who was better educated on my condition. Come to find out, my other endocrinologist was not giving me the proper treatment. He was giving me so many steroids, it was making me sick! I dropped that endocrinologist and started receiving care from the new one. I eventually had to switch to another endocrinologist closer to home ("musical chairs" is a game you have to be used to with CPHP) and after seeing her for a couple of months, I confided in her that I was trying to get on disability. To my surprise and relief, she was very supportive and agreed that with my condition, there is no way I could find gainful employment. She said "You are already working full-time as your own pituitary gland". Hearing those words made me cry tears of joy. That validation helped pull me out of the self-loathing and depression I was struggling with since I had to quit my job.

Now, I'm just doing my best to keep my health in check. I still have more "bad days" than "good days", but I do what I can to take care of myself. I am working with an attorney to fight for disability. I was denied twice already, but we just appealed to see a judge. My fingers are crossed!

I can't do much, but I try to help other CPHP patients like myself by making videos on my YouTube channel and writing posts on my blog. https://insomniadoodles.com/