I often find myself referencing the time I spent trying to work despite the complications caused by my Panhypopituitarism, so I decided I should probably dedicate a post to it, that way I can insert a link for reference rather than making every post referencing it unnecessarily long.
*** Heads up- I do utilize some mild profanity ***
For those of you who don’t know, I have a rare congenital condition called “Panhypopituitarism” (PHP). It is caused by Septo-Optic Dysplasia (SOD), a complication stemming from Optic Nerve Hypoplasia (ONH). Long story short, my pituitary gland does not function well, so my body does not make the hormones it needs to survive on its own. I see a specialist, follow strict medication regimens, and have blood tests every three months to track and treat it. There is no cure, and while treatment for this condition has taken great strides over the years, it is still not perfect and is often a case of trial and error. Symptoms can be debilitating when hormones are out of balance, and getting improper treatment can have devastating consequences. With the proper care, a PHP patient can live a normal life, but some patients (like myself) have a very severe case that can lead to disability.
A couple of years ago when I first got back on Growth Hormone therapy and my overall health and energy improved so much, I decided to get a job at Kroger. First off, let me praise Kroger for how well they treated me. This is an amazing company to work for. I can not stress enough how much I appreciate them. It’s a grocery store chain that is well-known here in Indiana. When I applied for the job, I told the interviewer about my health, and I warned him that this was a trial for me to see if I could handle work, since my previous attempt at working led to illness that caused me to have to quit. He said he was willing to let me give it a shot, and I was hired on as a Courtesy Clerk (bagger) right away. I started with 15-hour work weeks, the lowest amount of hours I could have. I worked hard, and came in any time they asked me to. After just a couple of weeks, my bosses took notice of my work ethic and I was promoted to work in the produce department. I got a raise, and more responsibilities.
I loved working back there. I know it seems kind of silly, but making sure produce was fresh and assisting customers with their questions made me feel like I was doing something that contributed to society. I took pride in that job, and I gave it everything I had. My bosses were happy with my effort, and I would often stay hours after my schedule just to make sure everything was prepared for the morning crew before I left for the night. My hours went from 15 a week, to about 30 within a pretty short amount of time. Some days, I would work a full 12 hours. I still felt great, so I didn’t hold myself back. There was talk among my bosses about possibly giving me a management position within the department, and they started training me on the computer system used to manage orders and inventory. It was really exciting, and I was so proud of myself!
Seemingly out of nowhere, I got sick.
The symptoms came on so suddenly. It started out as just an annoying cold, so I took some medicine and laid down to rest. When I woke up, I felt so disoriented, nauseated, and weak. It took everything I had to get out of bed and stumble to the bathroom so I could puke. My stomach was empty, so I was just dry heaving. I felt like absolute crap, so I decided it would be a good idea to take a stress dose of my Hydrocortisone and drink some water. I could not keep it down, and I could tell by the intense feelings of weakness and how delirious I was that this was likely an adrenal crisis. I had never experienced one before, but I knew that this was a risk with my Adrenal Insufficiency, and I knew how serious it is. Adrenal Crises can be fatal without proper treatment.
I immediately asked for a ride to the ER. My grandma met me at the hospital and helped explain my condition to the doctors. She stayed by my side through the whole thing, which was extremely helpful, since I was having a very hard time concentrating. The ER doctor wasn’t well educated on adrenal crisis, but he quickly educated himself and gave me the treatment I needed as soon as he could. My memory of that night is pretty fuzzy, but they took some blood for a test, hooked me up to an IV with saline solution, and started on the lifesaving steroid treatment. After a couple of hours in the ER, they informed me that I would have to be admitted to the hospital for the night. I was taken up to a really nice room, which was private and super cozy. Hospital stays are expensive as hell, but damn if the bed wasn’t comfortable.
The doctor and nurses were all so great. I went though 4 bags of saline, IV steroids every so often, and an EKG test because my resting heart rate was over 100. They wouldn’t let me leave until it went down to at least 90. I called my boss and informed him that I was in the hospital and I would be missing work that night, but I said I might be back tomorrow, which is really silly to look back on, but I was so hyped up on steroids I was actually feeling pretty darn great.
Afraid of my hospital bill (I had CRAPPY insurance via United Healthcare. Dropping their name on purpose because I had the worst experiences with them. I even reported them to the DOI and they got a slap on the wrist. I highly recommend you go to their Facebook page and read their reviews. I am not the only person who had an issue with them.) I left the hospital as soon as I was able to.
My grandma insisted that I stay at her house for a few days. I was happy to, I love spending time with her anyway. Later that night after I got back from the hospital, I quickly developed a really bad cold, which turned into bronchitis. I had a difficult time breathing, and had to see another doctor, who prescribed a nebulizer and some medicine to help me recover. I was stuck in bed from this for about a week. After I recovered, I went back to work, but my endocrinologist and lung specialist both imposed restrictions for my work. I was not allowed to lift 50lbs or more and I could no longer work in refrigerated parts of the store because of my asthma (which was listed on my medical record as a cause of my adrenal crisis).
In the produce department, you occasionally have to lift 50lbs of potatoes, and other heavy boxes of produce, and the produce stock room was refrigerated. I tried to continue working there, but my body was still pretty weak, and the new limitations made me a dud of an employee. I always had to be scheduled to work with someone else so they could go into the cooler for me. I was used to working solo, so that was really stressful, and I felt so guilty, I decided to talk to my boss about moving me to another department. Luckily, there were some openings in the grocery department. There was no cooler to worry about, and my bosses were super flexible and didn’t ask me to do any heavy lifting, which is actually a pretty common part of that job.
I stayed in the grocery department for a while, and I was occasionally passed from department to department when hours needed filled, so I worked just about everywhere in the store, and when the manager of the floral and nutrition departments took some time off for medical leave, I became a candidate for her position.
My bosses were really good about understanding my limitations and respecting my restrictions. All of them but one, that is. She was a new manager from another store, and she immediately got a reputation for being too much of a hard-ass, and rude to boot. I didn’t mind the hard-ass part, since that is a boss’s job, but she was just… mean. I can get along with just about everybody, but I she really rubbed me the wrong way. It didn’t matter how hard I tried at my job, she seemed to completely disregard me as a person. She was told about my restrictions, yet she scheduled me to work in the dairy department by myself with no training, and I’m sure you can probably guess that the entire workspace for that department is refrigerated.
Not only was I scheduled to run that department for an entire night on my own with no training, but she expected me to also run the grocery department on my own as well. I went to her office to talk to her about it, and I explained my restrictions, and she basically told me to just tough it out. I talked to some other employees in the store that night, and they were very upset with her. I am so grateful for the other workers that night, because they insisted that I stay out of the cooler and they restocked the shelves there for me (Shoutout to you folks working with me that night. You know who you are, and I love you guys). I really should have reported that manager to the union, but I didn’t want to get anyone into trouble and I HATE drama.
I continued to try to work as hard as I could, but my health was on a steady decline. I started having intense bouts of fatigue and would have to take frequent breaks to recover. I took way more breaks than was allowed, but again, most of my bosses were so understanding, and while the new manager was petty about it, she didn’t stop me from resting when I needed to. Despite that, my work ethic wasn’t lost on the new manager either. She offered to give me the position of department head for the floral and nutrition departments. I felt so honored that I was being considered for the position, I immediately said yes without fully considering the job I was agreeing to do.
She started training me on running the department, and I maintained it on my own for a few days, but it was clear to me that I just did not have the stamina for that position. As department head, it would fall on me to keep the entire department in order. I would have employees to care for it on my days of, but if I had to miss any days that required the department head to carry out their responsibilities, the entire department, and the overall store in turn, would suffer. I put some serious thought to it, and decided that while I was flattered by the offer and I knew I had the right mindset to lead a department, my health was just not reliable enough to take on that much responsibility.
I was very nervous about talking to the manager about this, but I knew I had to. I knew that if I just took the job without taking my health into consideration, it would be very irresponsible of me. It was inevitable that I would have to call off some days because of the intense bouts of fatigue that occasionally left me bedridden. It wouldn’t be right for me to take on the position when there were other employees interested in the promotion who had perfectly healthy and reliable bodies.
I walked up to her office on one of my days off, and asked to speak with her. I thanked her for the opportunity, and asked her if she was aware of my health conditions. She said she wasn’t, which was understandable considering how new she was. I informed her that when I was hired, I warned my employer that my health might fail me at some point. I felt defeated to have to admit it, but I told her that my health had declined so much that I could not take the management position. I explained to her the complications that come with my conditions, and explained to her that even though I really did want to take on the management position, I didn’t think it was in the best interest of the store.
She looked me straight in the eyes and said, “Do you know what I think? I think you don’t want to do it.”
God, it hurts to even type that out. I felt like breaking down when I heard those words. I wanted to snap. I wanted to give her a thorough scolding for what she just said to me, but I kept calm. I calmly explained to her that she was mistaken. I told her “I’m sorry you think I’m just lazy. I am not. My body just doesn’t function right. If you think it’s frustrating having an employee who can’t do what you expect of them, imagine what it’s like to have a body that doesn’t want to work half the time.”
She did not apologize, but she continued to try to convince me to take the job anyway. I told her that I would not take the position, but thanked her again for the opportunity, and I walked home shaking and on the verge of tears. When I got home, I immediately broke down. That was the absolute worst feeling. I felt so hopeless and frustrated, and the guilt of having to admit my limitations only to receive THAT response tore me up. I almost quit my job then and there, but I decided that I was better than that, and I needed to stay strong. I wasn’t about to let one shitty boss ruin my entire work experience.
When I went back to work, I swallowed my pride and acted like the conversation with that manager had never happened. My interactions with her were professional and courteous even though every time I saw her, my blood boiled. She seemed to keep her distance, which was fine by me. I put some serious thought to reporting her to my union, but honestly I took pity on her ignorance. She was an ableist jerk, but I didn’t think it was worth losing her job over. I just let it go and focused on my job.
I started getting so weak at work that I had to leave early more and more often, and missed days entirely. It was clear that my body was no longer able to handle physical labor. I talked to my bosses about it, and they allowed me to work as a cashier instead. I spent quite a lot of time working in the liquor store, which I quickly grew to love. The customers were fun and interesting, and I was able to work alone again. I stayed at the register most of the time, and walked around once in a while to make sure everything was neatly stocked and clean. The liquor store manager and I became pretty good friends, ans things were going great. I kept a stool behind the counter so I could sit down when I needed to, and nobody made me feel self-conscious about my limitations.
Things continued to decline. I missed more and more work, and the dizzy spells became more frequent. Because I was not recovering an things seemed to be declining further, I reached out to my doctors to try to figure out what was going on with my body.
My endocrinologist at the time said that I was experiencing vertigo, but it had nothing to do with my Panhypopituitarism (I know now that he was dead wrong, but we’ll get there). He instructed me to see my primary care physician about it, so I did. She examined me and said she couldn’t figure out why I was having vertigo either, so she referred me to an ENT specialist. He told me that due to the double-nystagmus from my Optic Nerve Hypoplasia, he could not determine if my problem was from an inner-ear condition or something else, so he ordered an MRI to rule out brain tumors. I had the MRI, which didn’t come back with anything out of the ordinary, other that what we were already aware of regarding my ONH/SOD and PHP. I called the ENT and asked what I should do about the dizziness, and he said he was at a loss about how to help me, but offered to refer me to his colleague, who might be able to help. At this point, I was exhausted trying to find an answer. I was tired of being passed from doctor to doctor with no luck getting an answer at all. I just gave up.
The dizziness continued, and became more intense and frequent. I eventually got to the point where even sitting up in a char was too much. I had to quit my job. I put in my two-week’s notice and my bosses scheduled me for the least amount of hours possible, but I still missed most of those days.
After I quit, I spent all my time resting and recovering, and wondering what I was going to do about the loss of the paycheck I was bringing in. At the time, my fiancee had a job that didn’t pay well, and on top of that, his hours were being drastically cut because his employer was losing a contract. We were slipping into some very hard financial times. I applied for food stamps, which was very helpful, but not enough to keep us afloat. Justin started looking for other employment and we went though a period of him being passed from one insecure job to another. He has a pretty good job now, thankfully, but at the time, we were really struggling.
I decided that since my health was too poor for me to handle work, I should pursue disability. I spoke with my endocrinologist about it, and he immediately told me that he refused to support my disability claim. I spoke with his nurse about it later and she told me that he just has a personal problem with disability benefits in general and does not think anyone should be on disability, so he refuses to help any of his patients get it.
I was heartbroken. I felt frustrated, trapped, and hopeless. Having a medical professional invalidate what I was going through destroyed me. I went down a spiral of depression that took me to some pretty dark places. Self-loathing and suicidal thoughts hit me frequently. I felt like a burden, and I saw no value in my life. Thankfully, I had some very supportive people around. My fiancee, grandmother, my friends, and even some of my old co-workers did their best to help keep my spirits high.
I decided to seek a second opinion from another endocrinologist to see what they had to say about the dizziness I was experiencing, and honestly I was ready to just drop the other endocrinologist after how he made me feel. The new endocrinologist I saw was so much more understanding, and seemed better educated on my conditions. She took one look at the dose of steroids he had me on and said that was dangerously high. She immediately changed my treatment and decreased my dose to a reasonable amount, and explained to me how to stress dose when I needed to. My previous endocrinologist only ever allowed me to stress dose when I had an infection. I learned from my new endocrinologist that he was not treating me correctly, and might actually have been the reason I was so sick. She explained that I should stress dose when I am feeling unwell, even during intense emotional stress, and before I exercise. She also went on to explain that vertigo is actually a common symptom of adrenal insufficiency, hypothyroidism, and hypogonadism, among other deficiencies that I have. She said we needed to work on balancing my hormones better, decrease those steroids, and avoid stress for a while until the vertigo decreases. She also told me that the adrenal crisis I had could have caused a permanent decline in my overall health. I was so thankful for her, and I immediately dropped that other endocrinologist so I could see her instead.
After about a month or so under her care, my health really started improving. I wasn’t out of the woods, but I was feeling better. I didn’t talk to her about disability for fear of being invalidated again, but she made me feel so much more understood and cared for. Unfortunately, I had to switch to a different endocrinologist who was a little closer to home, but this new endocrinologist was actually even better! She continued to keep me on the same treatment, just increased my thyroid meds a little bit, and continued to monitor my symptoms and keep track of everything.
After seeing her for a few months, I finally opened up to her that I was seeking disability, and she gave me complete support. She told me that there was no way that I could handle a full-time job with my conditions, since I’m already working full-time as my own pituitary gland, and she even went so far as to write a wonderful letter to the disability office expressing her support for my disability claim. I left her office that day just beaming. GOD it felt do GOOD to be validated by a professional after all the hell I had been through.
I am still fighting for disability. My claim was denied twice, but I have an attorney now and we are currently awaiting a court date to be scheduled for my hearing. Please wish me luck!
My health is still very poor, but I have improved a lot. The vertigo doesn’t occur as often as it used to. I am struggling with some other difficult symptoms right now because of a change in my treatment (I switched from birth control to oral estrogen and progesterone because the birth control was causing a severe decline in bone health), but once we get everything balanced out, I should be doing fairly well!
While I will never be able to find gainful employment, I still contribute to my community through volunteer work when I can handle it, and I’m organizing a fundraiser to help the homeless population within my county. Society still makes me feel guilty for not having a job, and I hate the days when I can;t get out of bed, but I am trying as hard as I can to still enjoy life with a positive outlook.
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Just for the record, that problem manager no longer works at that store.