Please help me find someone else with my rare conditon
My name is Valerie, I’m a teenager, and I’m chronically ill.
I’ve been sick for a decade now, and unfortunately, I tend to get all the rare and ~special~ disorders. Because of this, I currently have doctors in nine cities spanning across five states. I battle six chronic conditions, and balancing them is a daily struggle, but I’ve managed.
But my newest condition has turned my life upside down. It’s called Recurrent Subacute Thyroiditis (RSAT) and most doctors will never see a case of this in their lifetime. I luckily have found a doctor who has least seen a few cases of this before, but I am the youngest person she has ever seen with this condition.
RSAT is an inflammation of the thyroid that causes overactivity, leading to high heart rates, trouble breathing, low blood pressure, dizziness, chest pains, insomnia, fatigue, hair loss, and muscle weakness. The overactivity lasts for about 2-3 months, and then the thyroid flips to inactivity, leading to lethargy, extreme fatigue, depression, low body temperature, and slow heart rates. The inactivity lasts for 2-3 months, making this a 4-6 month condition. I’m currently in the middle of my second episode, and my first episode was just two years ago.
I am terrified. This condition has caused me to be rushed to the ER twice. This condition has rendered me so dizzy and dropped my blood pressure so low that walking is a hazard and I am in a wheelchair. This condition has prevented me from attending school since the end of October. This condition can occur again, and there is no telling when or how often.
I’ve scoured the web, posted in countless Facebook groups, analyzed research, and even scheduled a conference call with doctors in another country to try to get some answers. Not only is there no information on it, but I can’t find anyone else with it (and due to HIPPA laws, my doctor is not allowed to connect me with the other cases she has seen). I have support from my friends and family, but they cannot even begin to understand what this is like.
I am alone in this right now, but I know the internet is a powerful place. I’ve seen other kids with rare conditions find support and/or answers, and I thought I might as well give it a shot. Please, please - even if you don’t have this condition, even if you don’t know me, please reblog this and spread this around. I just need to know that I’m not alone in this. Even finding one person who has this would make the world of a difference.
Thank you in advance. Those who know me best know I absolutely hate asking for help, but I can’t do this alone anymore.
An old concoction used since the middle ages. Legend says that at the height of the black plague in Europe, four thieves were managing to rob the homes of those either dead or ill without contracting the plague. When found out they attributed this to an elixir they created together, each adding their own ingredient to the mixture. The original recipe varies, depending on who makes it and it likely has changed over the years passing from maker to maker.
The recipe I made is as follows
combine in a corked bottle and submerge in some Apple Cider Vinegar. Leave in a dark place for a week until ready to strain and use, and it should keep for about 6-months to a year (again if kept in a dark area)
While rose isn’t traditional I chose it as the fourth ingredient because it’s considered a healing substance. Rose water was often used to keep away illness and miasma, and commonly found around Europe, It would make sense that this flower might be used, so into the vinegar it went.
It can be used to keep away sickness, in hoodoo it’s commonly found used for floor washes and baths to heal and uncross one’s self and purify if under magical attack.
Hey, blossoms! There are times when we get ill, which is perfectly natural. To be honest, I am currently sick, so this is kind of a refined version of my thoughts from a few days ago. I was worried about missing school, and I thought that some ideas I have could help you!
The most important thing to do when you’re sick is to take care of yourself and get better. This may mean putting your studies aside, but health always comes first. Here’s some tips:
- Certain types of tea, like chamomile and ones with lemon, can soothe sore throats.
- (Side note: I’ve heard that marshmallows are also able to help sore throats because of the gelatin they contain, but that may not be true and I don’t have a credible source for it.)
- Make sure you drink lots of fluids, like juice, milk, and most importantly, water! One of my personal faves is Tang, which is this orange powder that you dissolve in water. It used to be really big in America a while ago but I don’t know widespread it is elsewhere.
- Try to shower regularly if you’re congested because the steam will clear out your sinuses.
- If you can’t shower regularly, nasal rinses will work just fine too! You can get a system for that at your local pharmacy. (There’s also this thing you can do where you fill a sink with hot water, put a towel over it, and stick your head underneath the towel. This allows the steam to build up, which means you can decongest a little.)
- Medicate regularly!! Check the directions on whatever type of medication you’re taking to see when it wears off and set a timer so you can stay on top of it. This will help your recovery process along a bit faster. However, DO NOT ABUSE MEDICATION. Take only as much as is prescribed because taking too much can actually be worse for your health.
- If you’re on antibiotics, make sure to eat well because antibiotics are designed to take out all types of bacteria within the body, even the good ones in your digestive system. (I’d personally recommend eating foods with fiber and protein and staying away from dairy if you can. That’s just my personal experience! It may be different for other people.)
- Get some rest!! You may want to catch up on your studies but you’ll be able to catch up quicker and understand material better if you’re well rested.
So, you’re feeling alright and ready to begin making up work. Where do you begin?
- Here’s someposts on catching up after being away for a while (note some of these are travel based, but there’s still some good information in there)
- Email your teachers! Text your classmates! Ask for notes, for homework, and for additional help if you’re unclear about what’s going on.
- If you’re feeling well enough, you could run in to your classes in order to get the homework and briefly conference with your teachers, but it’s always best to make sure you’re not contagious or feeling poorly before doing so. Email is pretty much just as effective.
- Start small. Trying to catch up on all your work in one day is never good. Try to do the work for maybe one class, and if you’re feeling well enough, do another.
- Do what’s most important first. If you’re in a group project and they’re waiting for your input on a presentation or something else, get that in ASAP. Don’t affect the grades of others with your illness.
returning to class
As you return to your usual schedule, here are some things to note:
- Before going back to class, ensure you’re in a good place mentally and physically. For example, if you’re still running a fever or you still feel very ill, take some more time and wait.
- Make sure your study space is functional so that you can begin to return back to your normal schedule. The desk reflects the mind.
- Keep up on your fluids! If you’re still a little under the weather or you haven’t finished that course of antibiotics, keep taking those meds!
- Don’t be hard on yourself if you don’t understand something. Being gone is hard. Ask for help and self-advocate.
- If you’re on a sports team or doing some other strenuous activity, it’s okay to take a couple more days away from that to let your body recover completely.
- The most important thing is to take it easy, even after you’re well enough to come back to class. If you overwork yourself while still recovering, that can lead to backslide, so please be careful!!
I hope this will be useful, darlings!! Take care of yourselves and remember that so many people are rooting for you to do well, including me :]
BG by Côme. The smoke on the ground around the man’s feet has been done by Benji. And Camille helped me A LOT with the rendering of the smokes because we had no time left:) Also I managed to loose my last animation file (clapclap) so the 2nd thing is just a part of the final movie and we don’t see everything clearly but whatever:)
Edit: No gif for today sorry it was to big so turn the HD button on it’s a bit better
It’s total bullshit that people who work in the food service industry (and others jobs, obviously) often have sick days but we’re not always “allowed” to take the sick days. They’d rather remain understaffed, exploit the workers they have, and force them to come in when they’re sick. So what happens? One person is sick then the whole kitchen is sick.
If you just let the one person who was sick stay home for the day or two they NEEDED then it wouldn’t become a problem. But what happens? Everyone else gets sick, some worse than others, and the sickness lasts longer because you’re not getting the rest that you need. All because you can’t be bothered to hire an extra person or two and we “need to come in there’s no one else.”