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. Because of all of my health problems, it is easy to get down on myself, and stress because I'm missing out on parts of my life. I often forget the importance of staying positive: positive thinking, especially when confronted with life's obstacles, can improve a person's psychological and physical health more than most people would realize. An optimistic outlook and positive response to less than ideal situations, reduces stress on a person's mind and body. Stress can exacerbate a person's health problems including gastrointestinal diseases, as well as increase risk to other health conditions. In the Mayo Clinic Article Positive Thinking: Stop Negative Self-Talk to Reduce Stress, it states "...having a positive outlook enables you to cope better with stressful situations, which reduces the harmful health effects of stress on your body." Here are some ways I cope with stress in order to maintain a positive outlook. 1. VentTalking to someone or writing in a diary helps me stay level-headed. Holding something in can cause me to explode and have a mental breakdown later on. Venting keeps me from blowing things way out of proportion. 2. Make ListsSome of you have probably noticed that most of my blog posts are formatted into lists. Making lists helps me organize my thoughts and prevent them from becoming chaotic. 3. LaughLaughing releases endorphins, chemicals in the brain that make someone feel happy. Sometimes, when I start to think negatively, I'll go on Youtube and watch something funny to make me laugh. I feel instantly happier and my mood has completely changed. 4. Reward YourselfThere are all some things in life we don't want to do, but have to do anyways. Even when I feel terrible, I have to complete my daily exercise. It makes me feel worse, but I'm told it will make me feel better in the long run. In order to help me push my body's limits while staying positive, I like to give myself a reward when I accomplish a goal. By rewarding myself for accomplishing a tough task, I turn something negative into a positive.
Happy New Year! I wish everyone a happy and healthy 2018. To start off the new year, I wanted to share a few of my resolutions. 1. Try a new food every weekRight now my diet pretty much consists of crackers, cantaloupe, coffee, and Cheerios. With my nausea and my restrictive diets, those are the only things that sound good enough to eat. But, I am not getting the nutrition and the calories I need. So, in an effort to break the cycle, my goal is to add in a new food every week. 2. Drink at least 3 liters of water per dayFor my Postural Orthostatic Tachycardia Syndrome (POTS), it is recommended that I drink 4 liters of water per day. Right now I am only drinking about 2 liters. My short term goal is to drink 3 liters but I want to eventually work up to 4. To meet this goal, I will consciously take sips throughout the day. 3. Wake up earlier/go to bed earlierAs mentioned in my previous blog post A Good Night's Rest, I'm in a bad cycle of going to bed late and sleeping in. In the new year, I'm going to try to start waking up early to break this cycle and get back to a normal sleeping pattern. 4. Work up to 30 minutes of cardio dailyFor my POTS, I am supposed to do 30 minutes of cardiovascular exercise per day. Right now, I am not doing anything except for going for walks and running errands. It is hard for me to work out when I am having few calories and am feeling nauseous, but it is possible that working out might actually make me feel better. I'll probably get worse before I get better, but I want to try to work back up to doing 30 minutes.
People might not realize that having a digestive disease can greatly affect a person's sleep. For me, my nausea kept me up late at night and caused me to wake during sleep. Then, I would sleep in late to make up for the lost time. Since my day started and ended later, my eating schedule was also later on in the day. When I would eat late at night, my digestion contributed to keeping me awake in addition to the nausea. I was consistently falling asleep late and waking up late. For a little while, I broke this pattern. Even after I broke the pattern, flare ups of nausea caused me to go back to my old sleeping and eating patterns. It is still something I am struggling with. There are a few things that helped me get back to a more regular schedule. 1. Don't Eat Before BedtimeSleep and digestion are controlled by the parasympathetic nervous system, a branch of the autonomic nervous system. With that said, they are separate processes. Falling asleep is much harder after eating because the body is still digesting the food. Finishing eating for the day at least 3 hours before bedtime can aid in falling asleep. 2. Avoid BluelightElectronic screens like those in television, smartphones, and computers emit blue-light. This type of light inhibits the body's release of melatonin, which induces sleep. It also increases alertness, causing a person to feel awake at night. 3. Create a RoutineHaving a relaxing night time routine can help transition your body from being awake and active to sleeping. Creating a pattern before bedtime can help the body to recognize when it is time to fall asleep, causing a person to fall asleep quicker. 4. No NappingNapping disrupts the body's natural sleeping pattern. A nap might seem helpful after a restless night, but in actuality it could cause another night of little sleep. 5. Set an AlarmNo matter how little you sleep the night before; no matter what time you fall asleep, wake up at the same time every morning. It may take a few days, but the body will start to feel sleepy earlier in the day, and therefore start to turn back the clock.
While eating that delicious-looking dessert sitting in front of you may seem like an okay idea at the time, later on you will regret ever laying eyes on it. If you are living with a digestive disease, or really any dietary restriction, you know what I'm talking about: that pizza, birthday cake, or part of the Thanksgiving feast you know you shouldn't have, but decide to eat anyways. Often, we get put in situations where edible temptations are put in front of us; whether or not we give into those temptations determines how we feel later on. Here are 3 tips to help yourself say no. 1. Eat beforehandIf you are going somewhere where you know before people are eating, eat before you go. This way you won't be hungry, and will be less likely to indulge. 2. Always have a snackA big part of socializing is food. With that said, you can't always eat what other people are able to. By carrying a snack, you can choose to eat that instead of something that is not within your dietary guidelines. 3. Check the menuNowadays, most restaurants have online menus. Check and see if the restaurant you are going to has safe options for you to eat. That way, you can be prepared with an order, eating beforehand, or bringing something with you. 4. Remove yourselfIt is okay to excuse yourself. People understand that it is hard for you to watch others eat food you want but can't have. And if you simply can't leave the event, excuse yourself to the bathroom, or step outside to make a phone call during mealtime. The bottom line is, if you feel like you can't trust yourself around certain foods, try not to be around them. It is important to remember that even though you may not have control over the body you are given and its limitations, you do have the ability to help yourself feel the best you can by making smart choices. Say no!
Orgain Chocolate Plant Based Protein Shake
Wanted to share one of my go-to's with everyone. It not only tastes great, but it is an easy way to get protein, vitamins, and minerals. It was developed by doctors for sensitive stomachs, made with all natural ingredients, and is USDA Certified Organic. I highly recommend it!
http://amzn.to/2yKBCsm Everybody has those days when you wake up feeling terrible and don't want to eat anything. But, it is important to remember that without food, your blood sugar will drop and the acid in your stomach will increase. This can actually make you feel worse, so sometimes forcing something down might help you feel better. 1. LiquidsLiquids are the easiest to digest because they flow right through you. Even if you might not want anything, try taking little sips of a smoothie, protein shake, soup, or broth over a long period of time. That way, it feels less like you're eating. 2. StarchesStarches are great when your stomach is extra sensitive. They don't have much nutritional value, but bland foods like bread, cereal, crackers, pasta, and rice are easier to get down when you're feeling nauseous. 3. Get MovingThis might sound awful, but moving around can stimulate digestion, which can make you hungrier. Being hungry can make it is easier to get food down. It also helps to prevent you from getting into a bad pattern of days stuck in bed.
Growing up with digestive disorders makes it hard for me to find foods that follow my strict dietary guidelines, and don't upset my stomach. I created this website to help other people who are going through similar things as to what I am, by giving diet advice, tips and tricks, and helping them to not go through this alone.
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Ivy/POTS//EDS//MCAS//SIBO/
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December 2018
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