My Diagnosis: Day 4
Day 4
That night, yet again I was moved to another ward. This one had a really good en-suite shower so I couldn't really complain. They finished the synacthen test and I received the results that morning. My adrenal glands were stimulated and they found that there was absolutely no change in my cortisol level. My adrenal glands were severely damaged from auto-immune action and on the brink of failure. Just from the results, it was apparent what the condition was. Luckily, I probably won't ever need a transplant as do most people with my condition since the lost hormones can be supplemented.
A group of doctors came in, including the disrespectful consultant who then confirmed my Addison's Disease. They quickly apologised and began to explain what I need to do. I had to process a lot of information at once and so I didn't really get a chance to react to the diagnosis. I remember telling my family chat the news first. It was such an apathetic post. I did care a lot but I think as a coping mechanism, I distanced myself from the reality of it and wrote in a way that a doctor would. "I have been diagnosed with Addison's Disease. I have to take medication for life." After that, I sort of zoned-out and started listening to music. I found Selena Gomez's Revival album to be really soothing. I thought her album was going to be more teen-pop but it had a lot of surprising adult emotion in it. I knew that she had been struggling with an auto-immune condition herself called lupus which is actually far more dangerous than my own. It damages the body is so many different ways. But I think that sole fact made me appreciate her lyrics a lot more. Especially the song Revival. Even though I felt so cold inside, listening to it filled me with confidence. The lyrics - "more than just survival, this is my revival" meant a lot to me because deep within me I wanted to convince myself that this was a pivotal moment in my life that I needed in order to grow. And I know that she was also stepping out of her health issues and trying to grow too. I hoped that I could emulate that. I thought I would come back stronger... but that didn't happen. I entered a slump. A huge one. But that's for another day.
Looking back, I think I had broken-down inside but I just didn't care enough at that point to vocalise it. It was like I had started to give up. It's so contradictory, because I just said that I was motivating myself (which is true), but as with all complex things, I think it was a way of masking my pain. I wanted to think that this was a second chance at life. That this time, I would show my true potential in all aspects of life. I've always been an overly ambitious person. It's why I'm a Slytherin. I want to achieve things and I want to do something that helps the world. But I would always fall-short somehow. Nevertheless, I was always able to put 100% (at least I thought I was) into what I was doing. But this condition basically told me that I can't handle stress and that I should take it slow. It sub-consciously and quite literally inhibits me from doing certain tasks. The contrast between my ambitions and taking it slow almost made it seem like my dreams were moving further away. It broke me more than it should've and more than I had realised myself. I was also quite self-conscious of having taken a gap year, falling behind everyone I knew in terms of education. I felt like time had slowed down for me and it was infuriating. Looking back now, I am glad that I took the year out because it's taught me to appreciate more things in life rather than be ultra-focused on getting perfect grades and emulating the success of the people around me. I think I definitely give myself a lot more credit for my achievements now and I'm a lot more content with facing failure. Still an ambitious Slytherin though!
Anyway...
I was then injected with intravenous 100mg Hydrocortisone to supplement the cortisol. I quickly started feeling better and then in the afternoon, my mum, sister and best friend came to visit. My mum definitely struggled with the news. Probably more than I did. I wish that I had been stronger at the time because it wasn't fun to see her full of so much anxiety and worry. But I couldn't help it. So many mixed-emotions were running through me. I had even had full-blown arguments with some of the people closest to me. I won't go into detail, but it wasn't pretty at all.
Eventually, the pent up feelings just became unbearable. This was all in one day, by the way. I was so upset at how the nurses/doctors didn't tell me anything and the excessive reading I did on Addison's Disease post-diagnosis just built up so much upset in me that I burst into tears all of the sudden. I don't remember what provoked it but it was my first tears. It took 4 whole days. I remember thinking it wasn't fair. Like the world had somehow conspired against me. No one on the wards seemed to care about me as an individual. They just wanted to know more about my condition. Being 18 and male as well as not Caucasian made me an unlikely candidate for an already rare condition. I was a scientific anomaly that they wanted to know more about. But as an 18 year old, I was afraid. Afraid for my future.
A bunch of doctors then visited with another group of students in tow, and came in. Already in an aggravated state, I just told the students to leave (respectfully). Again, I wish I had let them observe me but to be honest, I would've punched one of them in the state that I was had they opened their mouths.
After they left, the one remaining doctor stayed to answer any questions and then revealed that I had suffered a crisis. Tired and just done with everything, I absolutely ripped this poor man into pieces, citing inconsistencies in my treatment left, right and centre. I was mostly justified because the endocrine team had failed to tell me a lot things. So many mistakes were made with my treatment. However, they still saved my life and I am eternally grateful for it. However, I didn't feel like that at first and because of that, those tears had soon evolved into a seething hatred which lingered within me post-diagnosis for a while. I felt like because I was ill, nothing else and no one else mattered. It was the lowest I had ever felt and it later became a major part of my slump.
I hope anyone reading my blog that has been recently diagnosed with Addison's Disease or any other life-altering condition reminds themselves that it will be fine. And please remind yourself that's it's okay to feel helpless. News like this isn't easy to handle as most of the time it's out of your own control. As cheesy as it sounds, it does get better. Your life may be slower and you may feel limited sometimes, but with patience and hard-work, you will achieve all that you set your eyes on.
As will I.
- T
That night, yet again I was moved to another ward. This one had a really good en-suite shower so I couldn't really complain. They finished the synacthen test and I received the results that morning. My adrenal glands were stimulated and they found that there was absolutely no change in my cortisol level. My adrenal glands were severely damaged from auto-immune action and on the brink of failure. Just from the results, it was apparent what the condition was. Luckily, I probably won't ever need a transplant as do most people with my condition since the lost hormones can be supplemented.
A group of doctors came in, including the disrespectful consultant who then confirmed my Addison's Disease. They quickly apologised and began to explain what I need to do. I had to process a lot of information at once and so I didn't really get a chance to react to the diagnosis. I remember telling my family chat the news first. It was such an apathetic post. I did care a lot but I think as a coping mechanism, I distanced myself from the reality of it and wrote in a way that a doctor would. "I have been diagnosed with Addison's Disease. I have to take medication for life." After that, I sort of zoned-out and started listening to music. I found Selena Gomez's Revival album to be really soothing. I thought her album was going to be more teen-pop but it had a lot of surprising adult emotion in it. I knew that she had been struggling with an auto-immune condition herself called lupus which is actually far more dangerous than my own. It damages the body is so many different ways. But I think that sole fact made me appreciate her lyrics a lot more. Especially the song Revival. Even though I felt so cold inside, listening to it filled me with confidence. The lyrics - "more than just survival, this is my revival" meant a lot to me because deep within me I wanted to convince myself that this was a pivotal moment in my life that I needed in order to grow. And I know that she was also stepping out of her health issues and trying to grow too. I hoped that I could emulate that. I thought I would come back stronger... but that didn't happen. I entered a slump. A huge one. But that's for another day.
Looking back, I think I had broken-down inside but I just didn't care enough at that point to vocalise it. It was like I had started to give up. It's so contradictory, because I just said that I was motivating myself (which is true), but as with all complex things, I think it was a way of masking my pain. I wanted to think that this was a second chance at life. That this time, I would show my true potential in all aspects of life. I've always been an overly ambitious person. It's why I'm a Slytherin. I want to achieve things and I want to do something that helps the world. But I would always fall-short somehow. Nevertheless, I was always able to put 100% (at least I thought I was) into what I was doing. But this condition basically told me that I can't handle stress and that I should take it slow. It sub-consciously and quite literally inhibits me from doing certain tasks. The contrast between my ambitions and taking it slow almost made it seem like my dreams were moving further away. It broke me more than it should've and more than I had realised myself. I was also quite self-conscious of having taken a gap year, falling behind everyone I knew in terms of education. I felt like time had slowed down for me and it was infuriating. Looking back now, I am glad that I took the year out because it's taught me to appreciate more things in life rather than be ultra-focused on getting perfect grades and emulating the success of the people around me. I think I definitely give myself a lot more credit for my achievements now and I'm a lot more content with facing failure. Still an ambitious Slytherin though!
Anyway...
I was then injected with intravenous 100mg Hydrocortisone to supplement the cortisol. I quickly started feeling better and then in the afternoon, my mum, sister and best friend came to visit. My mum definitely struggled with the news. Probably more than I did. I wish that I had been stronger at the time because it wasn't fun to see her full of so much anxiety and worry. But I couldn't help it. So many mixed-emotions were running through me. I had even had full-blown arguments with some of the people closest to me. I won't go into detail, but it wasn't pretty at all.
Eventually, the pent up feelings just became unbearable. This was all in one day, by the way. I was so upset at how the nurses/doctors didn't tell me anything and the excessive reading I did on Addison's Disease post-diagnosis just built up so much upset in me that I burst into tears all of the sudden. I don't remember what provoked it but it was my first tears. It took 4 whole days. I remember thinking it wasn't fair. Like the world had somehow conspired against me. No one on the wards seemed to care about me as an individual. They just wanted to know more about my condition. Being 18 and male as well as not Caucasian made me an unlikely candidate for an already rare condition. I was a scientific anomaly that they wanted to know more about. But as an 18 year old, I was afraid. Afraid for my future.
A bunch of doctors then visited with another group of students in tow, and came in. Already in an aggravated state, I just told the students to leave (respectfully). Again, I wish I had let them observe me but to be honest, I would've punched one of them in the state that I was had they opened their mouths.
After they left, the one remaining doctor stayed to answer any questions and then revealed that I had suffered a crisis. Tired and just done with everything, I absolutely ripped this poor man into pieces, citing inconsistencies in my treatment left, right and centre. I was mostly justified because the endocrine team had failed to tell me a lot things. So many mistakes were made with my treatment. However, they still saved my life and I am eternally grateful for it. However, I didn't feel like that at first and because of that, those tears had soon evolved into a seething hatred which lingered within me post-diagnosis for a while. I felt like because I was ill, nothing else and no one else mattered. It was the lowest I had ever felt and it later became a major part of my slump.
I hope anyone reading my blog that has been recently diagnosed with Addison's Disease or any other life-altering condition reminds themselves that it will be fine. And please remind yourself that's it's okay to feel helpless. News like this isn't easy to handle as most of the time it's out of your own control. As cheesy as it sounds, it does get better. Your life may be slower and you may feel limited sometimes, but with patience and hard-work, you will achieve all that you set your eyes on.
As will I.
- T
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