8 - Growing Pains

And you thought a normal puberty was hard without having EPP.



     It was the summer before 5th grade when puberty hit Porcelain like a rock. She woke up one morning with the most horrendous migraine, back aches, cramps ... Luckily her mother made this amazing raspberry leaf tea. It helped with all the symptoms! Eventually, she just became used to Tartarus recreating itself inside her body every month for an entire week. A lot of other things happened as well, such as the need for more protein. Having medium rare beef steaks (among other things) more often became part of the norm.

Welcome to being a girl. Oh and contraceptives to help you say? Nope. Not an option with porphyria. It will make symptoms 100 times worse. Hormone therapy of any kind is not safe.

     Other things changed as well, like her senses heightened. She noticed early on in life that her sense of smell was a lot stronger than other kids, more so when she reached her pre-teens. She knew what people had for lunch if they were close enough to her, and whether or not they had showered. That wasn't the worst of it. During summer time, people, well.... smelled. Ever walk past someone, and their perfume or cologne gagged you? Imagine that 3-fold in a school hallway.

     She could see in the dark better than most because of not going out in the sun. Her eyes became even more sensitive to light as she grew older. This became problematic in middle school because the gym had big upper windows that let the sun in. The walls were light beige, and the floor a yellowish maple brown. At least the bleachers were a dark color! Porcelain would frequently get headaches after being in that gym.

     Remember when I wrote about overheating? It happened faster as she grew older. Her mother was eventually able to get her a pass out of that class. Fortunately, she had other means to exercise without having to deal with the heat of the gym. School wasn't year-round thankfully! Exercise anaphylaxis was not a fun experience. That's when our body reacts to how hot we get while exercising because we overheat before we begin to sweat. Symptoms of this that can happen with porphyria are: hives, nausea, dizziness, swelling, cramps and difficulty breathing.

     You know the quote from the fairytale, "The better to hear you with, my dear!"? Porcelain's hearing got stronger as well. This would usually be a great thing, but sometimes, it sucked. Especially when trying to concentrate in class, but she could hear everyone who was whispering around her. This was Porcelain's own special kind of puberty.

     Story time! During Porcelain's 1st year of middle school, right before she was able to get a pass for gym class, they were going to play baseball outside because it was a nice sunny day. Porcelain tried to explain to the coach that she couldn't do that because of the sun. He explained back to her that there was plenty of shade because of the school building, and she would be fine. "A little fresh air will do you good!" Porcelain sighed heavily and reluctantly went outside with a borrowed baseball cap and sunglasses. She stood on the left side of the batter's box. When the team switched places, she was told she had to be in the outfield whether she liked it or not. Tears quietly streamed down her face as she thought she didn't have a choice. She tried to be a good student and maybe make her gym teacher a believer about her sun allergy.

     Sure enough, within 3 minutes she started feeling weak. She had a long sleeves on as well, so overheating was inevitable. Luckily one of Porcelain's classmates knew about her allergy and noticed her swaying a bit. The girl ran over to her and helped her walk into the shade. There were heated words between the girl and the teacher, then she helped Porcelain into the school bathroom to cool off. Porcelain went home right after, and oh boy was her mother pissed! The school got an earful about how reckless the teacher was to make Porcelain go outside in the first place. The teacher was only lightly reprimanded, but Porcelain received a pass for the rest of the year, and didn't have to take the class again in the future.


Unfortunately, there will always be those who just don't understand, no matter how much we explain. It wasn't all bad though! The heightened senses came in handy, especially with the juicy gossip in the halls! *wink*




Links for your viewing pleasure:

Hormonal Contraception and Porphyria Interactions:
https://porphyria.eu/sv/content/hormonal-contraception

Exercise Induced Anaphylaxis:
https://www.healthline.com/health/exercise-induced-anaphylaxis#symptoms