Pretty self explanatory title, right? I know, I know: Who would do that? The answer: a lot more people than you would expect.
Where I live, a Los Angeles suburb, there are many flashy women who feel the need to wear an excess of their perfume when running their daily errands; I'm not sure who they're trying to impress. Granted, they have probably built up a tolerance and are unaware that they’re actually drowning in their perfume, and drowning other people with them. Most of all, though, they are ignorant to the harsh effects that their chemicals have on people living with MCAS. Normally, my MCAS flares to my own fault. I’ll usually eat something I know will make me feel bad. But, sometimes, the flare is caused by something I have no control over, as simple as a whiff of a candle or in most cases the chemicals in perfume, which can set me back for a week or even longer. I’ll eat hardly anything, won’t leave the house, and basically just be miserable until the flare calms down and the effects eventually wear off. A message to all perfume lovers: I completely understand the desire to smell good with perfume on a date night or a night out on the town. But during the day, when you are running errands, there is no point as to wearing an excess of perfume. Please, try to restrain yourselves know that you know the negative effects that chemical scents can have on others.
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For the past few months, I’ve been trying to get my life together: trying new medications, changing my diet, getting back to school, and in general, just figuring out how to manage my illnesses to get back a somewhat normal life.
This summer has been a rollercoaster ride. One of my gastroenterologists put me on L-Carnitine and CoQ10, supplements for Mitochondrial Disease. A few of my doctors have mentioned Mito Disease to me in the past; I would be a likely candidate for this diagnosis based on my symptoms. It hard to diagnose, but luckily the treatment is involves taking benign supplements. Out of all the medications I’m taking, the L-Carnitine and CoQ10 seem to have made the biggest difference. But, the effects have worn off because I’ve been taking them regularly for an extended period of time. To remedy this, I’m going off of them for 2 weeks before starting to take them again. For the past months and currently, I’ve been trying to find new safe foods to add to my diet. But, it’s a vicious cycle. When I’m feeling better, I’m willing to expand my diet and try new foods, helping me to gain some of my weight back. But, I’ll usually end up eating something that I react to, or I find a food that is safe and I’m excited about eating, and then I eat way too much of it, to the point where it’s not safe anymore and I start to react to it. Whenever I react to a food, I feel extremely nauseous for the rest of the day, I’ll get a bad rash on my face (and sometimes neck, chest, and back) and for the next few weeks I’ll eat hardly anything, causing me to lose any of the weight I’d gained back. Right now I’m in a bad spell, but I just have to get through it and rely on my safe crackers. Over the summer, I took a few online classes to help catch up with all of the schoolwork that I’ve missed. Since I took the 2017-2018 school year off, it’s safe to say that I’ve got a lot of work to make up before I can graduate high school. Instead of graduating in 2019, I am going to take an extra year to graduate in 2020. I’m not in a good enough place health-wise to be able to go back to high school and be a normal student, and can’t consider taking rigorous AP classes like before I started having my health problems. This year, I plan on making up as much work as possible and finish most, if not all, the credit requirements to graduate. Right now, I’m in the process of getting an IEP, which will allow me to continue my high school education for longer than four years. Because I’ll have had more time to manage my symptoms by the next school year, I should be able to take the more advanced classes that I’m interested in, specifically AP Biology. My plan is still to go to a four-year university, and I’m thinking about majoring in a science-related field, and possibly continuing on to medical school. Because my improvement has been so staggered, it’s easy to forget how far I’ve come. My parents will usually remind me though, when I look back to where I was a year ago: barely leaving the house, and struggling to even walk a block up the street, I’ve actually made great progress, and I will keep progressing. |
Ivy/POTS//EDS//MCAS//SIBO/
/Gastroparesis/ Archives
December 2018
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