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.”
One of the worst epidemics in human history, a sixteenth-century pestilence that devastated Mexico’s native population, may have been caused by a deadly form of salmonella from Europe, a pair of studies suggest.
In one study, researchers say they have recovered DNA of the stomach bacterium from burials in Mexico linked to a 1540s epidemic that killed up to 80% of the country’s native inhabitants. The team reports its findings in a preprint posted on the bioRxiv server on 8 February1.
This is potentially the first genetic evidence of the pathogen that caused the massive decline in native populations after European colonization, says Hannes Schroeder, an ancient-DNA researcher at the Natural History Museum of Denmark in Copenhagen who was not involved in the work. “It’s a super-cool study.”
Dead bodies and ditches
In 1519, when forces led by Spanish conquistador Hernando Cortés arrived in Mexico, the native population was estimated at about 25 million. A century later, after a Spanish victory and a series of epidemics, numbers had plunged to around 1 million.
The largest of these disease outbreaks were known as cocoliztli (from the word for ‘pestilence’ in Nahuatl, the Aztec language). Two major cocoliztli, beginning in 1545 and 1576, killed an estimated 7 million to 18 million people living in Mexico’s highland regions.
“In the cities and large towns, big ditches were dug, and from morning to sunset the priests did nothing else but carry the dead bodies and throw them into the ditches,” noted a Franciscan historian who witnessed the 1576 outbreak.
There has been little consensus on the cause of cocoliztli — although measles, smallpox and typhus have all been mooted. In 2002, researchers at the National Autonomous University of Mexico (UNAM) in Mexico City proposed that a viral haemorrhagic fever, exacerbated by a catastrophic drought, was behind the carnage2. They compared the magnitude of the 1545 outbreak to that of the Black Death in fourteenth-century Europe.
In an attempt to settle the question, a team led by evolutionary geneticist Johannes Krause at the Max Planck Institute for the Science of Human History in Jena, Germany, extracted and sequenced DNA from the teeth of 29 people buried in the Oaxacan highlands of southern Mexico. All but five were linked to a cocoliztli that researchers think ran from 1545 to 1550.
Ancient bacterial DNA recovered from several of the people matched that of Salmonella, based on comparisons with a database of more than 2,700 modern bacterial genomes.
Further sequencing of short, damaged DNA fragments from the remains allowed the team to reconstruct two genomes of a Salmonella enterica strain known as Paratyphi C. Today, this bacterium causes enteric fever, a typhus-like illness, that occurs mostly in developing countries. If left untreated, it kills 10–15% of infected people.
It’s perfectly reasonable that the bacterium could have caused this epidemic, says Schroeder. “They make a really good case.” But María Ávila-Arcos, an evolutionary geneticist at UNAM, isn’t convinced. She notes that some people suggest that a virus caused the cocoliztli, and that wouldn’t have been picked up by the team’s method.
The question of origin
Krause and his colleagues’ proposal is helped by another study posted on bioRxiv last week, which raises the possibility that Salmonella Paratyphi C arrived in Mexico from Europe3.
A team led by Mark Achtman, a microbiologist at the University of Warwick in Coventry, UK, collected and sequenced the genome of the bacterial strain from the remains of a young woman buried around 1200 in a cemetery in Trondheim, Norway. It is the earliest evidence for the now-rare Salmonella strain, and proof that it was circulating in Europe, according to the study. (Both teams declined to comment on their research because their papers have been submitted to a peer-reviewed journal.)
“Really, what we’d like to do is look at both strains together,” says Hendrik Poinar, an evolutionary biologist at McMaster University in Hamilton, Canada. And if more ancient genomes can be collected from Europe and the Americas, it should be possible to find out more conclusively whether deadly pathogens such as Salmonella arrived in the New World from Europe.
The existence of Salmonella Paratyphi C in Norway 300 years before it appeared in Mexico doesn’t prove that Europeans spread enteric fever to native Mexicans, says Schroeder, but that hypothesis is reasonable. A small percentage of people infected with Salmonella Paratyphi C carry the bacterium without falling ill, so apparently healthy Spaniards could have infected Mexicans who lacked natural resistance.
Paratyphi C is transmitted through faecal material, and a collapse of social order during the Spanish conquest might have led to the poor sanitary conditions that are ripe for Salmonella spread, Krause and his team note in the paper.
Krause’s study offers a blueprint for identifying the pathogens behind ancient outbreaks, says Schroeder. His own team plans to look for ancient pathogens in Caribbean burial sites that seem to be linked to catastrophic outbreaks, and that were established after the Europeans arrived. “The idea that some of them might have been caused by Salmonella is now a distinct possibility,” he says.