Ty's interview
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How did all start?
I was born with PHP and SOD/ONH but was not diagnosed until after I was adopted. My adoptive parents noticed I was generally in poor health around 8 months as I was not eating, not crawling, or sleeping, and they became suspicious that I may have issues with my eyes as well. I, then, at 9 months, was taken to an optometrist and was promptly diagnosed with SOD/ONH. The doctor warned my parents to take me to an endocrinologist as I may have also had other issues with the disease, so that is what we did. Sure enough, the Endocrinologist promptly diagnosed me with PHP as well and immediately placed me on Hormone replacement therapy. Following this, I was a very sickly child throughout my infancy and toddlerhood and suffered from pneumonia, sleep apnea, night terrors, constant illness, and was in adrenal crisis once and nearly died when I was 4 due to having the flu. It was horrifying for everyone involved.
Do you already have a diagnosis? How long did it take you to get it?
I have already been diagnosed with PHP and SOD/ONH and was diagnosed at 9 months of age.
For what medical specialties have you been treated? What has been the most useful specialty for your?
This question is poorly worded and doesn't make sense.
What has been the most useful thing for you so far?
I think that my family and friends have been the most helpful as they help me keep going and help me think positively and help give me strength when I am too sick to function. My family and I have also constantly been in the process of possibly acquiring a service dog for me to help keep me safe when they aren't around and to alert to my cortisol levels, glucose, and anxiety. We are also hoping to find a guide dog trainer who could also train him/her as a visual assistance dog as well, as I cannot drive due to my partial blindness and have to walk everywhere I go. This would help me be safe around traffic that I may not be able to see. and greatly reduce the risk of adrenal crisis in total.
What have been your biggest difficulties?
insomnia sleep/wake cycle disturbances, Mental health, pain, being blind, and balancing my illness with the responsibilities in my daily life have been the most difficult aspects of PHP and SOD/ONH in my opinion. I find it really difficult to function how everyone expects me to and wants me to, especially now that I'm living on my own, in a different state than my immediate family. This really increases anxiety and depression, in my opinion, when you don't live near people you know, especially if you're chronically ill The only people I live near are my birth family and they're crazy.
How has your social and family environment reacted? Have your social or family relationships changed?
My immediate adoptive family is pretty supportive, and so is most of my extended adoptive family, especially my adoptive dad's family, but I feel like most of my family members don't understand me fully, because of my illness and might be kind of annoyed and think I'm obnoxious because of it. My birth family, on the other hand, have a very negative view of me and my illness. Everything I am makes them feel guilty and they take it out on me as if its all my fault. But in reality, they still see me as a child and most of them hate me because of my illness and refuse to acknowledge if I bring it up for any reason. its like they all pretend I don't exist, even if I standing right in front of them. Because it seems like to everyone in the whole world I'm this sick monster. My little sister is the only one in my birth mom's side of the family who I have a good relationship with as the rest of them are severely verbally, and sometimes physically abusive.
What things have you stopped doing?
Exercise is one of the hardest things for me as I'm already exhausted in general, and in quite a bit of pain throughout the day. I have tried to adapt it to my needs but most of the time I am not very successful in that endeavor. Also, due to my poorly regulated circadian cycle and temperature, It is almost impossible for me to take early morning classes, especially in the winter, unless I have an extremely understanding professor.
What do you think about the future?
I hope that I can continue toward my goal of graduating college and starting an adaptive clothing business for kids. I also, definitely hope that my symptoms do not get worse as they have been in my adulthood. If I'm positive about the future, I hope that one day there will be a cure for PHP. I also think/hope that my clothing will bring hope, joy, happiness, and independence to many disabled/chronically ill children and families out there
So far, which years have been the best years in your life? What have you done during them?
I would have to say my childhood years were the easiest years of my life. despite the obvious reasons, when I was a kid my PHP didn't affect me as badly, I was not as physically limited as I am now, I didn't struggle as badly with my weight, I had more energy and I slept better, and lived in a very caring, safe, and supportive environment with my adoptive family.
What would you like to do if you didn’t have your condition?
I would just want to be a normal person and be able to easily live and work in peace and be able to easily wake up in the morning, easily get dressed, and live my life without the burden of pain and exhaustion. that's all I would want as I've never known what that feels like.
If you had to describe your life in a sentence, what would it be?
I'm sick and tired of being sick and tired
Finally, what advice would you give to a person in a similar situation?
You can do it. Always refer to your Endocrinologist if you are ever unsure about a symptom, dosage, or situation, also be sure to wear a medical alert bracelet and take your meds so you can reduce your risk of Adrenal crisis related death. It is so important to follow your endocrinologist's instructions regarding your health and routine as well, as they are/should be experts on our disease. Also, make sure to tell all healthcare professionals you use about your PHP and adrenal insufficiency so they know what meds or treatment to give you in accordance with your existing meds and body function. This information is, especially, paramount if you are going to be undergoing surgery or other traumatic procedures, as you need to tell it to the medical staff so they know to give you a proper stress dose in return.
