New website, new ordering setup, new HALLOWEEN LIMITED EDITIONS. Re-adding products every weekend for the rest of 2020.
Highly recommend if your in need of a binder and have EDS! Ligit every binder I tried before dislocated my ribs, I bought a sports bra from them and took an inch off my bust size and it’s the most comfortable chesticle prison I own. Was even able to do dance lessons and ride my tricycle in it with no issues!
Contact Student Disability Services (SDS) ASAP!! They are your friends and will help you facilitate conversations with your professors and with housing for any accomadations you may need!
TALK TO YOUR PROFS!! They do not bite I promise! As soon as they see that you are registered with SDS, they will do everything they can to see you raccomadations met within there class. Plus this is a great time to introduce yourself to them so you aren’t just a nameless face in the class. This will help if you ever need favors or letters of recommendation from them later.
Make sure you stay in the right dorm for you! Many campuses have several different styles of dorms for you to pick from and they have different price points. DO NOT SETTLE ON A DORM. This is where you will be staying a majority of the time and you want to make sure you are comfortable. This means taking in account for your bad days. How close are you to where your classes will be? How close are you to food? How close are you to health services? These are all important factors in where you choose to live.
Start small with how much you take on! Give yourself time to build up to college life. Start with smaller hours and maybe one student organization and build from there. It will always be easier to add on to your list of responsibilities than it is to take away. I started out with 15 hours, and being a member of an organization, then became and officer of said org, then got a campus part time job, and now I have a full time job on campus along with a steady increase of my hours throughout the process.
Don’t be afraid of communicating with your new friends about your disability. I know it can be hard to open up about something you may view as a negative quality about yourself, but 1) it isn’t a bad thing about you, and 2) college is such an accepting place! You will find your safe spot and make understanding friends. Now I’m not saying you wont come across a couple of bad apples, but college is such a huge community. You WILL find your group eventually and they will completely understand your personal ups and downs and be there through it all and even help you though those low spoons days. I absolutely adore my group because it has gotten to the point I don’t even need to say anything and they already know what I need, and they will even get food and class notes for me before I even ask them to do so.
Definitely plan for meals inside your dorm. I know there are some bad days where even if food is just downstairs, I cant even make it that far. If that means having hella snacks, or even making sure you have a fridge, do that! We do not want a starving spoonie who already doesn’t feel good. Dats bad. No no. Same thing goes for water! Hydrate or Die-drate!. Most schools will have a place where you can get a gallon of water using your dining meal plan.
Roommates! Love em or hate them, they will be apart of your college experience. Make sure you communicate with them about your needs. At the very beginning of the year, you will most likely sign a roommate contract with each other that outlines your expectations for your dorm. Again, DONT SETTLE! If you need quiet hours, don’t be afraid to ask for them. If you don’t want guests at certain times, or at all, talk about that. I know it may seem daunting but I promise it is absolutely worth it to fight for your needs. You will be living there 24/7 and it is as much as your home as it is theirs. There should also be a CA/RA that can help you and your roommate find common ground and negotiate peacefully!
This is all I can think of at the moment, BUT if y’all have any questions or just want to talk about your college experience so far, my DMs and Asks are open!
Here is my token Tippy picture for this post! Enjoy! She is still a little brat but I adore her.
Bracing for housework so I don’t have hand pain tonight.
This is super cool! What type of brace is this/where do you get it? Is it comfy for long term wear? What area of pain does it target? So many questions! Ahh but it looks cool and I’m glad is works for you.
The price put on education is dumb as hell and I for one won’t let anyone else be scammed by their university bookstore!
If you message me your textbook ISBNs I can find you scans of your textbooks for 10 dollars a pop. AND I can offer you these textbooks without you giving up any information about yourself, because let’s be real the internet is a sketchy place. I can just send you a link to a google drive where you can access the PDFs and downloaded them without any fear of malware or viruses.
I just want to save y’all money. Personally, all my spending money goes towards my cat and food. I saved myself about 600 dollars. I want to do the same for y’all. Please feel free to share this around to anyone you know struggling to buy textbooks.
This isn’t a scam, this isn’t a hack of my account. To prove it, here is a picture of Tippy being adorable. TBH the internet can never have too much cat pictures
”No other disease in the history of modern medicine, has been neglected in such a way as Ehler’s Danlos Syndrome” Professor Rodney Grahame
EDS is a group of connective tissue disorders, our collagen is defective. Collagen is a major component of the human body. This causes a wide variety of multi-systematic symptoms. EDS is incredibly hard to diagnosis and not widely known. It is extremely hard to for doctors who are not educated in EDS to put together symptoms like constant nausea, dislocations/subluxations, hyper-mobility and easy bruising (just to name a few). Because of this, EDS is considered a rare and under-diagnosed. We are not rare, just rarely know.
Ehler’s Danlos Syndrome as all to often been overlooked, misunderstood and mistreated. As with many other rare and invisible illnesses. Here are some facts about EDS:
EDS is a connective tissue disorder.
It is something that effects the entire body, it does not just make you extra bendy.
There are 13 identified subtypes, with some being ultra rare.
It is an invisible illness.
It is a life changer.
Not just a ‘minor inconvenience’.
It is valid.
Don’t let anyone tell you differently.
“It’s like when you run a marathon, and you’re sore for the next couple days, but that feeling never. Goes. Away. You rest, it still hurts. You work out more, it still hurts. You take pain medicine, it still hurts. You change your diet, it still hurts. You do every possible thing you can think of, it still hurts. But then you have to pretend like you’re fine otherwise you get ridiculed which just makes everything worse.”
It’s EDS awareness month once again and the reality is awareness is not enough.
For those that don’t know EDS is a connective disorder that causes a wide array of symptoms from joint dislocations to chronic nausea and so much more. There are 13 identified subtypes, all but one having an identified gene and some being ultra rare.
EDS has been overlooked, mistreated and misunderstood for far too long. Patients seeking care and understanding are often met with disbelief from the very people who are supposed to be helping us. We as patients with EDS are denied our own experience by our healthcare providers, the very people who are supposed to help us. There are not only chronic health issues when met with a lack of understanding but also psychological implications. According to Loreen Myerson, an anthropologist and a person living with EDS - “The healthcare experience of anyone with EDS appears to be much the same. Almost without exception, negative.”
Up until 1980 Hysteria was a studied psychological disorder that was thought to be caused by female reproductive organs. Women’s pain is all too often dismissed and ignored, a recent study published in a Pennsylvania journal found that women typically wait 16 minutes longer to receive pain medications than their male counterparts in an emergency room setting. A survey of 2,400 women with chronic pain published in the National Pain Report found that 90% of women feel that their healthcare system discriminates against women. Another study found that women who are in the emergency room with acute abdominal pain wait on average 65 minutes before receiving analgesic (painkiller), while their male counterparts receive analgesic wait on average 49 minutes.
I look back at my childhood and all the signs were there, they were just simply dismissed and ignored by the people who were supposed to be helping me. look back at my childhood and all the signs are there. Women are disproportionately affected by EDS. EDS is still overlooked, misdiagnosed and mistreated by the very people who are supposed to be helping us. My story however is not unique, both anecdotal evidence and peer reviewed research are pointing at disturbing trend that it is not at all new, women are more likely to be dismissed and overlooked when it comes to chronic pain and other health issues. In a peer reviewed study published in the Autoimmunity Reviews found that autoimmune diseases disproportionately affect women with 65% of patients being women. 85% of thyroiditis, systemic sclerosis, systemic lupus erythematosus and sjogren’s patients are female.
This is a cultural issue that we must continue to fight for ourselves and those to come, as demonstrated above both my peer reviewed research and personal narrative. These issues are ever present in our society and women’s pain is taken less seriously whether it comes to emergency care or by a primary care physician.
EDS is misunderstood, overlooked and mistreated. But there is so much hope for the future. All of us zebras who are fighting for more awareness. Hopefully in the future it won’t take us on average 20 years to be diagnosed.
Technically, it was 3 years for me… but I was already just into my forties and it took a serious cascade of symptoms to get the diagnosis ball rolling. Looking back, there were clues right back to my childhood so really, it took four whole decades.
May is Ehlers-Danlos (and Hypermobility Spectrum Disorder) Awareness month. I’m all too aware of hypermobile EDS myself, having been born with this complex, hereditary genetic condition. This charity helped me to finally get a diagnosis and provided support when I needed it most. I am educated and reassured by their online resources, plus the existence of a helpline and local support groups.
In short, I think they’re rather S.P.E.C.I.A.L. and deserve some support in return, so I’ve gathered a few friends, spring-cleaned Ricky’s C.A.M.P. and hereby invite you over to my Twitchchannel to share in the fun! We have new Channel Caps Redemption options, some of which affect gameplay liveand others that help look after the streamers (such as Hydrate!).
So for the whole of May I will be raising money via [JustGiving]which goes directly to the charity.
Our goal fundraising total is two vault numbers put together: £761.11
You can help by following me on Twitch -where you can find my stream schedule- and sharing this post and others that I’ll put on Twitter and Instagram (both @TheArtOf_Sal).
