The story of Sunshine
I have congenital panhypopituitarism, caused by Optic Nerve Hypoplasia (ONH), also known as Septooptic Dysplasia (SOD). Long words, I know! It took me nearly 20 years to really understand what they meant, and how they have such an effect on my life, but I am starting to get the hang of managing my health so I can live as normal a life as possible with these debilitating conditions.
Since this is congenital, it means I’ve had it my entire life. I was officially diagnosed in early elementary school, when I was about 11 or 12. It’s hard to remember that far back, but my parents, teachers, and often cruel classmates could tell I wasn’t developing like other children. Puberty just wasn’t starting, and I was very small and frail, falling ill very often. My parents took me to see an Endocrinologist who ran some very extensive tests, including an IV pituitary stimulation test and MRI scan. I remember spending the entire day at the hospital loopy on sleeping pills they gave me to make the full day of tests more bearable. The endocrinologist told us that I had a condition called Panhypopituitarism, which essentially means my pituitary gland isn’t making any of the hormones my body needs to function properly. This means I have Addison’s disease, Hypothyroidism, Growth Hormone Deficiency, Gonadotropin Deficiencies, and a litany of other hormone and vitamin deficiencies. I was immediately placed on hormone replacement therapies and steroid shots to get my body working as well as possible.
Years went by, and I got used to taking my handfuls of pills daily. I never really got used to the painful growth hormone (GH) injections, and once I reached a good enough height, I asked to be taken off the shots. My endocrinologist did his best to try to keep me on the GH, but I refused. It was too painful. I didn’t realize it at the time, but I had been injecting in the wrong areas all along, and the pain was just too much. I had no idea how much getting off this treatment was going to affect my quality of life, but I’ll come back to that later…
I turned 18 and still, no period. We went back to my endocrinologist for help, and he prescribed birth control to jump-start my menstrual cycle, and I finally started having a period, my breasts grew, and I developed some pubic hair. (I never developed armpit hair, cha-ching! :D)
Despite having such serious conditions, my parents and I never really looked into them. I was expected to be able to do all the same things my peers could do, and despite falling ill often, I never really looked into why I seemed so much weaker than everyone else around me. I had no idea that what I was dealing with was serious chronic fatigue. I was only seeing my endocrinologist once a year, so my hormone levels were often off due to my medications not being tweaked as often as they should have been. (Someone with my conditions needs to see an endocrinologist AT LEAST once every six months. I currently see my endocrinologist every four months.) It’s unfortunate, but I was accused by my parents and teachers of being lazy. This led to serious self-esteem issues and depression. I dealt with a lot of self-loathing. I thought I was worthless. Because of this, I stopped trying entirely. I just kind of gave up. I would go to school sick and fatigued and be treated like a hypochondriac by the nurse, and lazy by my teachers. I was kicked out of the Speech Team and theater club, which was my passion at the time. Then, I went home and was berated by my step-mother for being so “lazy”. She would make me stand in the kitchen while she prepared dinner and scold me for not trying hard enough, saying over and over “It all boils down to laziness”. Because I was unaware of the complications of my disorder, I had no choice but to believe her. I’ll be honest. I try to forgive her, because I know she didn’t know much about my conditions either, but I hate that woman for treating me like this. Because we had such a bad relationship, I wasn’t upset at all when she left my father, my sister, and I for another man and his family. Good riddance! I was saddened to see the effects of the divorce on my dad and sister, but I was actually happier with her gone. Nobody was berating me all the time anymore. I’m not sure if my dad even knew about the way she talked to me. He worked hard at his job and wasn’t really all that attentive. He tried, but he wasn’t really as “social” as my step-mom. After she left and he started to recover from the grief of the divorce, he started to talk to my sister and I more often. I became very close with my dad, and I am so lucky to have him. He is one of my best friends. Having someone so supportive and nurturing at home gave me some confidence and helped me recover from those years of feeling worthless all the time. I wanted to try harder, but I realized that there was something holding me back. I kept getting sick and weak. I missed a lot of school, and the make-up work kept piling up. I failed gym class twice because I couldn’t keep up with their demands. I know this wasn’t normal, so I started asking questions instead of just writing it off as a character flaw on my end.
I had a visit with my endocrinologist scheduled, so I decided to start asking more questions so I could better understand my conditions. Come to find out, my medical conditions were actually pretty serious. My dad came with me to the appointment and listened while I talked to my endocrinologist about how I had been feeling. My dad looked disheartened and said “You don’t complain enough”. It made me laugh a little. I guess he was right. I had always just kept my struggles to myself because I had been led to believe for so long that they were just excuses to be lazy. My endocrinologist was not surprised to hear about my symptoms at all. He explained everything that was happening to me, and changed my medication doses to help my quality of life improve. Lo and behold, I did become more healthy after a little while! I still wasn’t 100%, but I had more energy and had an easier time focusing in class. I learned from my endocrinologist how to manage my health better, and I started to really take charge of my healthcare. I gained more confidence because I wasn’t blaming myself as much anymore, and my grades improved dramatically. I want from a <2.5 GPA to a >3.0 in just one year! I have the transcript to prove it. I discovered I had an affinity for Japanese culture and I started taking Japanese class at school. The teacher was amazing and became my mentor. I give her a lot of credit for keeping me motivated and supporting me. I became secretary of Japanese club, so I had a lot of responsibility in the club, but she understood when I became too sick to attend meetings. For that, I am very grateful. My other teachers weren’t so kind, but that was their flaw for being unwilling to understand. I could tell a few “horror stories” regarding insensitive teachers, but I’ll spare you those for now.
I met my fiancee in Creative Writing class, and he gave me that final nudge and emotional support I needed to really buckle down and get that diploma!
Long story short, high school was a hard struggle for me, but I WAS able to graduate with the help of my supportive Japanese teacher, my now-fiancee, and some other amazing educators that led my school’s credit recovery class, which is what ultimately made graduation possible for me. I graduated a half a year late, but I managed it! I take a lot of pride in my hard work and perseverance despite everything I had gone though.
After I graduated, I spent a couple of years living at my dad’s house. My eyesight is extremely poor due to the ONH (I have no peripheral vision, and what vision I do have is “worse than that of a 60 year-old”, according to my vision specialist.) so I never wanted to learn how to drive. My dad didn’t think my vision was as bad as it is, so he tried to pressure me into learning to drive. We had many an argument over this, but I stood fast and refused. I knew it would be too dangerous for me. He wasn’t happy with that at all, but I was stubborn, and I am glad I was. I just recently went to see my new vision specialist to have my eyes assessed for Vocational Rehabilitation Services, and he literally laughed when I asked if he thought I could drive. I laughed with him! It felt good to finally have my suspicions validated! Needless to say, I let my dad know about this and he stopped pestering me about not driving. I’m not HAPPY I have this disability, but MAN it felt good to be validated. When you have invisible disabilities like I do, any confirmation that you’re not lying is an uplifting relief.
Anyway, I kind of got ahead of myself. Let’s rewind a bit, going a few years back to 2014. I had moved out of my dad’s house and into a beautiful little home with my Fiancee, and we had been living together for a couple of years by then. I had lived with my dad, and then my grandma from the year I graduated (2011) up until that point. I had tried to work at a convenience store, but after just a few months working part-time, my health declined dramatically, and I had to quit. I developed a serious upper respiratory infection that refused to let up, and I was having bad fatigue and dizzy spells at work, so I decided my health just couldn’t handle that kind of work. When Justin and I moved in together, I started seeing a new endocrinologist that was closer to home. When this new doctor noticed I was not treating my growth hormone deficiency, he implored me to get back on GH therapy. It took some time for him to convince me, but after he explained the risk of congestive heart failure and other extreme health problems over time if this was left untreated, and assured me that my overall health would dramatically improve if I resumed treatment, I decided to give it a shot. (Pun intended, and I do not apologize for that. :P)
It took a long time fighting with my insurance company to get the GH approved, but when I finally got the treatment, I really started feeling so much better after about six months! A full year later, and I was ready to try getting a job again! I put in my application at Kroger, and I had an interview soon after. I explained to the person interviewing me that I had serious health problems, and they may affect my ability to work. I warned him that I had lost my previous job because I became too sick to work, and that this job at Kroger was an experiment to see if I can handle working now that I was on this new medication that made me feel better. He was extremely understanding and I was hired on the spot.
I loved my job there. I started out as a bagger, and I worked really hard. All of my bosses were impressed, and I really liked all of my co-workers. In just two weeks, I was promoted to work in the Produce department, where I showed I could really take charge of a department and work very hard. They trained me in a few other departments as well as being a cashier, and I became their go-to person for just about everything they needed help with. I was happy to do so! I started picking up more and more hours until I was averaging about 25-30 hours a week, much higher than the 15 hours a week I had listed as my availability, but I didn’t mind, I was feeling great!
Then, I had my first adrenal crisis. It came out of nowhere. I had been feeling a little sick, but I thought it was probably just that bronchitis I get every year. I did my best to treat it, but I suddenly had an asthma attack one night that caused an Addisonian Crisis. I was rushed to the E.R., where I was given very good care. They immediately put me on IV fluids and after an hour or so of the E.R. doctor learning about my condition, they started me on the emergency steroids I needed to recover from the crisis. They acted quickly, and did what they could to help me. I was not allowed to leave the hospital that night, and I was admitted for 24 hours observation. I received three full bags of IV fluids and periodic IV steroids. I was feeling so much better the next day that I called my boss and said I couldn’t leave the hospital that day, but I would try to come back to work the next day. Those steroids had me feeling like I could conquer the world! haha Anyway, I actually wound up missing two weeks of work after my crisis because the bronchitis set in shortly after I was discharged from the hospital the next day.
After the bronchitis went away, I returned to work, but I never felt like I had the same amount of energy as before. I felt weaker, but I pressed through it as hard as I could. After my crisis, my endocrinologist imposed a weight lifting limit of 50lbs on me, and forbade me from working in departments that have a cooler because it was affecting my asthma, and we did not want another crisis. Because of these new restrictions, I could no longer work in the produce department, which I was pretty bummed about. I loved working there. I could see the impact my hard work was having keeping the department organized and running smoothly. I started taking more hours as a cashier and substitute in the grocery and non-foods departments instead. I still worked as hard as I could despite the obvious return of fatigue on my body. I brought this up with my endocrinologist, and he increased the amount of steroids I was on by quite a lot, hoping it would help. It did not. I continued to decline, and continued to try to fight through it. The store got new management, and I worked as hard as I could to impress the new boss. She was indeed impressed by my work ethic and gave me harder jobs to do around the store, which I was happy to take on.
And then I hit “the wall”. Fatigue got worse, and a new symptom started to surface. Vertigo. It got bad enough at times that I had to take extra breaks at work to sit down and get my bearings. The new boss, who was still impressed by my work ethic, offered me a management position leading the Nutrition department. I was elated! I felt really accomplished for having been offered such a position in such a short amount of time working there. I immediately accepted the offer without really considering my declining health. I guess I was just hoping it would get better. Weeks passed, and it was becoming obvious to me that I was only getting worse. She was beginning to train me in managing the Nutrition department, and I realized I was not the right choice for the job. My health was becoming more unpredictable, and I was missing more and more days due to extreme fatigue spells and illness.
I finally decided to talk to her about it. I went in to work on one of my days off, went up to her office, and explained my declining health to her. The man who had originally hired me had apparently not explained my health condition to her, so she had no idea that I had taken the job with the warning that my health might decline. I tried my best to explain my condition to her. I poured my heart out, and I told her how much I appreciated her offering this promotion to me, but I didn’t trust my body enough to become the manager of an entire department. I might miss too many days, and the whole department would suffer for it, which would in turn cause the store to suffer. I didn’t want that. I knew there were other people interested in taking the position, and they were healthy and reliable. I told her I really did want the job, which was true, but it would not be in the store’s best interest to have me in charge, so I wanted to decline and just keep working as a cashier.
She looked me dead in the eyes and said “You know what I think? I think you just don’t WANT the job.” She went on to accuse me of using my health as an excuse to not do harder work. I somehow managed to keep my cool, though I did raise my voice a little at her as I apologized that she misunderstood, but I was NOT lazy. I was giving up this promotion as a favor to her. I explained that my body is unreliable and doesn’t function well every day, and if that was frustrating to her, she should try to imagine what it’s like for ME to live in this body. I told her “thanks, but no thanks” for the promotion, and left her office in tears.
I continued to work there for a couple of months before the vertigo and fatigue became so much progressively worse that I couldn’t stay on my feet for very long anymore. I apologized profusely to my bosses, and the man who had originally hired me assured me that my health was more important and thanked me for the job I had done. I put in my two week’s notice, and they signed me up for the minimal number of hours possible. I tried to make it to work on those days, but every time, I wound up being discharged early because the vertigo was so bad, I couldn’t stand on my own.
It took me a few weeks of self-care and bedrest before my body really started to recover. I went to my endocrinologist often and expressed my frustrations to him. He had no answers for me. I eventually decided to try a new endocrinologist, because I was not impressed by the job he was doing. My new endocrinologist was amazing. She listened to my concerns and was really alarmed to see the high dose of steroids my previous endocrinologist had me on. She told me he had me on so much that I was actually showing symptoms of Cushings Disease, the opposite of Addison’s. She immediately instructed me to lower my steroid dose, and after a few weeks, I actually started feeling a little better, though the fatigue and vertigo never subsided. I asked her about this, and she instructed me to see a PCP to diagnose the vertigo. The PCP handed me off to an inner-ear specialist, who could not make any diagnoses because I have a naturally occurring nystagmus due to my ONH, so he ordered an MRI scan to rule out brain tumors and whatnot. Aside from the issues we already knew about, the MRI came out clear, and I was told they could not diagnose the cause of my vertigo. I was out of luck.
So here I was with debilitating vertigo, unable to work, and unable to do much on my own. My health improved after a while of not working, and I really wanted to try and find some work I could do that didn’t require me to be on my feet, so I reached out to Vocational Rehabilitation Services, and I am currently seeking employment with their help. It has been nearly a year now looking for work with their help, and office jobs are just not available in my area. Being unable to drive really makes it difficult for me as well. There is no real public transit system in my town. The only “public transit” service we have shuts down at 5 PM every day, so that really doesn’t help me much.
Anyway, the vertigo still hits me hard, so I am still looking for answers there. I sought the opinion of yet another endocrinologist very recently, and this one is amazing. She was very attentive, listened to my entire medical history and talked to me about my treatments. Come to find out… I had been taking my thyroid meds incorrectly my entire life! None of my other doctors had caught that, and I was clueless! When I told her how I was taking my thyroid meds along with all of my other morning medications including a calcium supplement, she told me the calcium interferes with thyroid meds, and I needed to stop taking it within four hours of my calcium supplement. I was instructed to take the thyroid meds on an empty stomach half an hour before breakfast, and wait four hours before taking my midday medications that includes my calcium supplement. She thinks that this, in addition to a newly discovered extreme estrogen / progesterone deficiency might be causing my vertigo. She is having me change my therapy dosage times for a while to see if it helps, and we’re working on finding a safe solution for treating the estrogen deficiency. She’s also going to test my bone density and all of my hormone levels. Like I said, I was very impressed with her attentiveness. She even confirmed that my adrenal crisis could definitely have a permanent impact on my overall health, validating the decline in health I experienced after the crisis.
With the help of these great doctors, some assistance from voc rehab, and a lot of love and support from my fiancee, friends, and family, I am really starting to get a handle on my health. I do not feel healthy enough to work yet, but I am still a very productive member of society. I volunteer my time when I can to help out in the community, and I recently established a new charity that raises money for local causes by accepting artwork from local artists to sell in a gallery-style silent auction event once a year, all proceeds from this first auction are going to go towards a homeless shelter that is being established in my city. It’s a brand new charity, but there is already so much positive support and outreach from the community that I am very encouraged to keep going with it! My calendar is now full of meetings and events coming up! I may not be able to do much in the way of physical labor, and this definitely isn’t making me any money, but it is making me feel pretty good. I have a purpose. A reason to keep focusing on my health and making myself stronger!
Despite having such disabling conditions, I am proving every day that I can still make a difference, even if it’s just by bringing a smile to someone’s face. That’s all I need to keep going, and keep going I will!
🙂
Thank you for reading my story. I know I kinda wrote a book there. I hope it wasn’t too much! haha
Wishing you all the best,
– Sunshine / 26 / Congenital Pamhypopituitarism / ONH patient