#MyHSDChallenge

[diagnosed-weird]

May is right around the corner, and it's also Ehlers-Danlos Syndromes (EDS) & Hypermobility Spectrum Disorders (HSD) Awareness Month!

Join The Ehlers-Danlos Society and raise awareness, visit www.ehlers-danlos.com/may-awareness

(Mention 3 of your friends or more here)

[dravenxivuk]

I’m doing this over on Twitter, so let’s do it here as well...

May is EDS & HSD awareness month. 

Day 1. Meet me 

I'm Draven (she/her), I'm 42, was diagnosed with EDS in 2017 after years of misdiagnosis & 'mystery' symptoms. I live with my Wife & our 2 cats. I game, art, knit & crochet.

2. My EDS 

I have Hypermobile Elhers-Danlos Syndrome. Along with joint hypermobility I also suffer chronic pain, concentration problems, sleep disturbance, fatigue, postural orthostatic tachycardia, migraines & gastrointestinal issues

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 8 Prompt: Movement and Activity

Movement and Activity can be very limited for those with EDS, especially those who have more severe symptoms and comorbidities. You may think of exercising as a run around the block or taking a trip to the gym. Others may think of exercise like going to physical therapy and peddling on a stationary bike slowly walking on a treadmill or working with elastic band. Exercise isn't always something that gets you out of breathe or your heart rate way up. For someone with EDS and some other conditions, exercise can take on a totally different meaning. Exercise can be some movements or positions that those who are healthy take for granted and do effortlessly without thinking twice about.

Exercise for us could be as simple as sitting up for a certain amount of time, remembering to change positions more often so we don't get blood clots, one of my exercises was rocking. Sitting on the couch and rocking back and forth or side to side just to get my bones moving a little bit to try to relieve some of my pain. doing light stretches or putting on AFO leg braces and sitting with our legs straight out on the couch to give them a little stretch to prevent furthering of spasticity I am one in a handful of EDS patients who cannot walk at all and is paralyzed from the waist down.

Though many EDS patients may have exercise plans such as walking to the mailbox and back each day, or bouncing on a balance ball, I do not have that ability do such activities and with my spinal issues which insurance will not cover the repair of it can be extremely dangerous for me to do things like this. For me sometimes it just a matter of lying on the couch on my back and trying to slide my foot up so my knee is bent and the bottom of my foot is flat on the couch with as little use of my hands as I can then extend it out straight again pushing with what little I still have in my legs, using my hands as little as possible to get it back straight out on the couch. I will also try this up by sliding it on the couch and trying to extend it by pressing my leg out, using a little help from my hands as possible to pull it back up which is much harder than doing so lying down. Many who are paralyzed or have paralysis have some movement in their legs, especially with a partial spinal cord injury but the movement usually isn't enough to do much with.

I cannot stand or support my own body weight on my legs but on my good days and in socks or shoes without clingy soles I can sometimes slide my foot back on my footplate if I go over a bump or something and my foot slides forward or off. This too is exercise by using what little I have to the best of my ability. I may not be able to lift my leg or move it well but sometimes I can slide it which is better than nothing. My doctors do not like me doing this anymore due to Osteoporosis however I still occasionally will put my KAFO leg braces on which have locks on them to lock my leg straight so my knee cannot bend and simply stand up in them. My legs cant do much as without them my knees would go out and I would go straight onto the floor but they do allow my body weight to distribute into my legs and my circulatory system to get some practice circulating blood in an upright position.

Another issue with EDS is movement disorders which is something I struggle with, sometimes worse than other times, especially in the evenings and when I have done too much. As mentioned in previous posts, the compression of my spinal cord. With so many nerves going through the spinal cord and brain, putting pressure and stress on those nerves result in them misfiring. I actually had this issue as a kid before we knew what it was but at the time it was only in my hand. My wrist would jerk so my hand, on the side of my thumb would jerk up towards my inner arm.

As an adult sometimes my legs will involuntarily kick or I will go spats so my legs won't bend and will hover several inches in front of my chair with my feet twisting inward and upward. I’ll have full body jerks kind of like what sometimes happens when you have those dreams of falling and your body jerks upon waking up but it will happen several times in a row and then several times in a row a few minutes later where my spine goes very straight then flaccid. I will also have facial ticks or full body ticks where the small muscles in my body will start twitching. When this happens in my GI system and respiratory system, it can get really scary because it can make me vomit, unable to swallow anything, give me blurry vision when my eyes start twitching or make it hard to breathe as I cannot control these smaller muscles. Some light stretches can reduce speciosity and stretch these muscles which doesn't reduce the neurological issues but reduces the muscular responses to those.

Movement and activity plans for someone like me may seem too easy or simple but until I can get a surgery to repair some of my neurological, brain and spine manifestations simple is about as good as it gets. The biggest goal of my movement activities is to prevent further sparsity, blood clots and to try to make it so that my heart and autonomic nervous system don't get to a point of no return if we can ever get my surgery approved or another treatment is found. You use it or you lose it so we are trying to prevent me from loosing any more function without going the other way and decreasing my movement through further damage to my spinal cord. It can be quite the fine line between not enough and too much so maintaining that balance is the current goal when it comes to movement and activity and its play in my daily life.

[liltumgrum]

May is Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month

I have Hypermobility Spectrum Disorder. Although once the diagnostic criteria is updated this year I’m sure that my label will be changed to a type of Ehlers Danlos Syndrome. HSD/EDS are genetic connective tissue disorders. To make the long story short, the part of our body responsible for binding, supporting, protecting, insulating, storing reserve fuel, and transporting substances is flawed. Even just one tiny flaw can cause major problems and comes along with a ton of comorbidity. More information here.

I’m going to try to participate on the social media awareness challenge, but make no promises. It may seem silly, annoying, or just to look for pity, however  this sort of thing is what eventually lead me to find a diagnosis. I would probably be dead if other people hadn’t shared their experiences on social media. Speaking of which, here’s an unfortunately necessary reminder: Yes, we are sick. Yes, we are disabled. Yes, EDS/HSD has and will continue to have a major impact on our lives, but we are just as much people as the rest of you. Don’t mistake our decreased quality of life and health for the “quality” of us as people. And please, please, please try not to use us as an excuse to belittle your our experiences and pain. 

Asks are open for any questions. Don’t worry, you’d be hard pressed to find a topic that I’m not willing to talk about. :)

Also, just gonna plop this here->

[stacyspoonley]

#bippityboppityboo @nsmobility RAMP FINISHED! I can even get myself up most of the way with my manual chair so my transport drivers don't have to worry #myEDSchallenge #myHSDchallenge 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿🦓 #COVID #COVID19 #CORONAVIRUS #DONATE #zebrastrong #spoonie #togetherwedazzle #riseup #adapt #ableism #fragilebutunbreakable #ZEBRAFASHION #primaryimmunodeficiency #sewing #DisabledJoy #keepmovingforward #disability #mycrazylife #invisibledisability #lgbt #chronicillness #raredisease #TogetherAtHome #HealthyAtHome #stayhome #mask #plasma 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ (at Lake Ronkonkoma, New York) https://www.instagram.com/p/CAt4MxpAr7c/?igshid=vif2twqymije

[varadasharma]

EDS/HSD Instagram Hop Details + #UseYourCraftStash - Digi Stamps

EDS/HSD Instagram Hop Details + #UseYourCraftStash – Digi Stamps

Hi friends, today I am feeling so honored to be part of a very special event! My Instagram friend (and a crafter I deeply admire!) Natasha Davies is having an Instagram hop for EDS/HSD awareness. You can check out her blog post here. She has also set up a Just Giving linkthat directs funds directly to the EDS.org for anyone that would like to donate. There are so many talented crafters sharing…

[unwanted-life-me]

EDS And HSD: Why Awareness Is Important

EDS And HSD: Why Awareness Is Important It's Ehler-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month so this article will shed light on these conditions #MyEDSChallenge #MyHSDChallenge #ActsofAwarenessChallenge #Blog #Read

While promoting my Ko-Fi page after I saw a prompt to do so on Twitter in a Ko-Fi thread, I randomly came across @LagerdahlPhoto who told me it was Ehler-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month. I’d only heard of the latter, so I asked if @LagerdahlPhoto could tell me a bit more about EDS, which they were only too happy to do. After reading the information…

[zebra-warrior]

Would you like to close off EDS Awareness month with a bang? Have some spare change? Wanna donate to an underdog. Please consider this month or any month making a donation to the Ehlers Danlos Society to help with research, education, and awareness for Ehlers Danlos Syndrome. A condition that is incredibly complex yet only a small amount is known about it. Donate here or at The Ehlers Danlos Societys website at ehlers-danlos.com

#myEDSchallenge #myHSDchallenge

[dravenxivuk]

Day 6. What you see and what you don’t see

What you see: bright coloured hair, smiles, walking stick 

What you don't see: days of recovery time for a single trip out, fatigue, pain, daily naps, all the other joint supports, grief for the life I used to have, strength to keep going

[dravenxivuk]

Oops, forgot to put this here yesterday!

3. EDS in a day 

Wake up exhausted, stiff & in pain. Crawl out of bed. Take meds with food & coffee. Get dressed. Rest. Have lunch. Nap. Wake up fuzzy & in pain. Watch streams, draw, game, knit etc depending on spoon levels. Sleep. Repeat

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 3 Prompt: Symptoms)

Unbeknownst to most people in the community and even many in the medical community as most medical personnel never learned about EDS in school or if they have were only taught the very most basic information about it but Ehlers Danlos Syndrome is a systemic condition and predisposes those with it to over 250 other conditions so it's not unusual for someone with EDS to have 20, 30 or even more other conditions caused by it which are called comorbid conditions or comorbidities.

EDS is a genetic condition that affects the structure of connective tissue. There are multiple types of connective tissue but there are also multiple types of EDS so one or more types of connective tissue can be impacted. Connective tissue also makes up at least part of every part of the body so when your connective tissue is faulty and prone to damage that also means so is everywhere connective tissue is located including but not limited to the skin, cartilage, the brain, heart, lungs, GI system, liver, kidneys, bladder, Mesentery system which is the stringy organ that is around your abdominal organs that eases then and holds them in place, lymph nodes, lymph ducts, nerves, blood vessels, blood cells, nerves, bones, bone marrow, joints, tendons, ligaments, muscle sheathing, eyes, ears, nails, hair follicles, spinal cord, sweat glands, respiratory system etc. You name it, it contains connective tissue so anything can go wrong with any part of the body leaving many patients diagnosed with conditions such as conversion disorder, meaning that all of your symptoms are in your head and you're fine for years and more often, decades because we usually get diagnosed with a lot of these comorbidities before we finally find that one doctor who can put the pieces together and say, this isn't in your head, you have Ehlers Danlos Syndrome and those other conditions are very real because EDS is what caused all of them.

Now that we have discussed comorbidities I have dealt with countless symptoms over my life. As a kid it started with chronic pain, migraine headaches, and issues resulting from a compromised immune system because I caught everything going around and usually more than once. I don't remember a holiday as a kid where I wasn't sick or hurt. I was extremely clumsy, unable to run correctly until high-school with the very extensive help of my gym teacher. I was always falling, rolling my ankle, and just in general looking awkward with my body movements. I had multiple gym teachers who would agree that there was something physically wrong with me long before I could get any doctors to listen to my mom or as an adult, myself. I had to take special reading and writing classes because even to this day I cannot hold a pencil well or write with control because my fingers are too hypermobile to control a pencil so my writing is often illegible. I had a very severe failure to thrive, also called juvenile dwarfism, not even growing an inch between the ages of 2 and 12. My parents were told when I was 2 years old that I would be 6’4’’because I was so tall as at one and two years old that people would criticize my mom for carrying me out in public thinking I was 4 or 5 years old when I was only a year or two years old. I was 3’2” from the age of 2 to the age of 12 and of course when I was 12 I was extremely short and was bullied for my size as well as my weight which increased due to inflammation from undiagnosed celiac disease. There were multiple incidences with medical personnel and social workers as a kid because I always had such severe bruising all over my body and they believed I was abused. I didn't lose my teeth, losing only one on my own and at the age of 8 my dentist began pulling out my teeth which left me with dental crowding and requiring braces which were removed prematurely. I dealt with Learning disabilities and have been in glasses since age 4. I would pass out all the time as a kid, starting at 8 years old.

Bullying was a huge issue for me as a kid because I was socially awkward showing signs of OCD as well as being more mature than my peers due to my medical experiences and history with my siblings that forced me to grow up more quickly. That combined with issues such as my clumsiness and height made me the perfect target for bullying. I got what I believe was my first Traumatic Brain Injury when I was 9 years old while hanging upside down on the monkey bars. My bully had another student who had Down Syndrome, climb to the top of the monkey bars and lift my legs so I fell off onto my head.

My second was in the 6th grade. The same bully would bully other kids to help her bully a bigger target of hers which was me. One day I was at my locker between classes. Our lockers were assigned in alphabetical order by last name, of course my bully's last name came right before mine so her locker was directly to the left of mine. My mom tried to get it changed but the school refused. She shoved me down between classes while I was exchanging my books and the two kids with the locker to the right of mine she had help her roll me onto my stomach on the ground, one sat on my butt and held my feet down, the other sat on my back and held my arms down under her feet. my bully yanked my head up so my forehead was on the floor of my locker and I was trying to get out so she had the girl on my back use one of her hands to hold my head down. My bully then kicked my locker door shut on my head over and over again and I went unconscious. There were two teachers in the hall at the time but they just waked into the classroom when it started. I woke up and the hall was empty. I went to the office and told them I needed them to call my mom, I needed to go home and explained what happened. They called my mom and instead of telling her the truth they told her she needed to pick me up because I was acting strange. She came and got me and found out what happened getting me treatment.

She then took me to the school a few days later since the doctor didn't want me to return for so long (I apologize I don't remember a lot from the two weeks following this so I'm going off what I was told so the exact time I was out of school, I believe was around two weeks but I'm not sure. Anyhow at the school, we met with the principal and office staff who denied any teachers were in the hall or that any of this happened. My mom demanded to see the recordings on the cameras as a hall came in at a T right behind my locker so that camera faced my locker as well as one at each end of the hall my locker was in. They tried to tell her all three cameras were broken. My mom wasn't buying it so they tried then saying the recordings were gone. they went round and round and the school flat out refused to show her the video. My mom demanded that the girl who did this be punished because she has been asking for the school to help me since I was in the first grade and this girl started bullying me but they always fail to do anything.

They tried to then give me an in school suspension which my mom refused to let them do. They still went behind her back when I returned and made me take peanut butter sandwiches to the kids in detention during my lunch as punishment because they were mad my mom came in to question the incident. They refused to punish my bully in any way and when my mom demanded to know why, they said her mom and grandmother graduated from the school so she has a lot of history with the school which years later we found out after me and 9 other kids that I know of and who knows how many others, ended up being pulled out of the same school because of her bullying that having history at the school actually turned out to mean, she was black and they would not punish her because of her color. At the end of the school year my mom pulled me out of the school not sure what to do since back then they didn't have any kind of free online schooling so pretty much everything costed money which is when my grandma stepped up and told my mom she would help because there was no way I would be going back to deal with more bullying.

I had a ton of intestinal issues having to start colonics at around 10 years old and get my first colonoscopy around the same time. As a teen I really went down hill, struggling to eat because I had very severe nausea and cramping pain upon eating which made many of my friends believe I was anorexic but I went years without being diagnosed with gastroparesis. I started having thyroid issues and finally diagnosed with food allergies at age 14, Chest pain, palpitations, arrhythmias and trouble breathing around age 15 and seizures and cardiac arrest events at age 17.

At age 19, right before starting college I lost the ability to walk with no reason why and was sent to physical therapy to learn to walk again. The hospital visits continued in college from the seizures, emergencies from my thyroid levels going sky high or bottoming out, I started having issues with low sugar, rectal bleeding and more GI and Muscular Skeletal issues that again came to the attention of a physical education professor I had in college. The cardiac arrests continued to happen and I got an emergency pacemaker put in at age 23. Also lost the ability to walk a second time and re learned during this time.

After graduating and starting working I really went down hill. My nerve pain got so bad I could hardly tolerate it and had a lot of issues with muscle spasticity. Passing out and dizzy spells got worse, seizure meds aren't working muscle weakness got again worse in my legs and I started literally wondering if I was dying, I had such severe fatigue that I slept every moment I wasn't working, bleed very badly during my period or with just mild trauma worrying my dentist so badly that he sent a letter to my doctor suggesting a possible bleeding disorder. I was going into shakes from low sugar and low sodium frequently but at the time had no idea why I would start shaking multiple times a day. Myoclonic epilepsy started and has progressively gotten worse, Dystonia started up, I started getting intestinal obstructions more often and more gastroparesis symptoms with the nausea and vomiting, sometimes cyclic vomiting. I developed a limp and went onto forearm crutches which eventually progressed to paralysis.

I have always had issues with dislocations of joints and spinal manifestations like scoliosis, Craniocervical and Atlantoaxial instability. I’m prone to non cancerous masses that could be cancerous one day including masses in my breasts, heals and between the vertebrates in my spine. My memory has deteriorated and I now have issues which I call temporary blindness when I turn my head a certain way which pinches my already compressed brainstem kinking it off so my vision is interrupted. With Systemic Mastocitosis I deal with allergic reaction type symptoms such as anaphylaxis, overproduction of mucus, coughing, hives, swelling, rashes, itching, hot flashes, flushing and more. I overheat and have hyperhidrosis. I have muscle spasms from the paralysis, dry mouth from the meds, in addition to the heart arrhythmias and trouble controlling my body temperature from the damage to my autonomic nervous system failure I have swelling of my abdomen, extreme thirst, bladder retention, abdominal cramping and more.

There are endless symptoms associated with EDS and it’s comorbidities which has a huge impact on your social life. You can't do the things you used to do and may come up with new hobbies and later deal with the grief associated with losing the ability to do those hobbies, in turn having to find new hobbies. You lose all or almost all of your friends because they don't like what you have become, the things you used to be able to do with them and no longer can, they don't understand if you need to cancel plans, when you lose the ability to drive they drop you cold because they don't want to pick you up many of us deal with the realization of how badly we wanted friends growing up due to our social awkwardness that resulted from our illness, time spent in the hospital, maturing more quickly, as well as the result of decades of medical abuse and neglect which in most of us has resulted in complex PTSD.

Almost all EDS patients are either on the Autism Spectrum, diagnosed with Obsessive Compulsive Disorder which some associate with social awkwardness and also the intense need for us to please people meaning many EDS patients were known as extremely hard and dedicated workers when working or in school as well as very dedicated to friends and families. We basically give our friends the clothes off of our backs meaning that most of us unknowingly befriend people who use us and are in take take take relationships where we give everything we have into a friendship or relationship while the other person gives little back resulting in most of us losing all or almost every friend we had when we get sick and no longer have anything to give. When we are no longer able to do for others those people quickly jump ship leaving us with no friends. Most of us have this very similar personality type due to our history of growing up quickly along with the shared comorbidity of Autism, OCD, and Complex PTSD.

There are countless symptoms associated with EDS and they are different for each individual. Even in my case alone these are only the tip of the iceberg when it comes to symptoms I have experienced alone so EDS isn't an easy condition to live with physically or emotionally and the diagnosis can be quite the pill to swallow with little understanding from friends, sometimes family or even the medical community.

[eds-zebra-warrior]

Ehlers Danlos Society Awareness Month (Day 31 Community)

Not all health conditions have what they call a community or a group of others with the same condition coming together as a group to be with, support and help one another. Let's be honest, most conditions don't need a community. There's a lot of conditions that are very cut and dry and easy to understand. There's a group on Facebook for everything but I can tell you right now there's not going to be a ton of people in a Hemorrhoid support group. The EDS group is a very close knit group with much value and importance to those who are part of it and I'll be explaining some of those reasons.

Of course one of the most obvious with having a rare disease is to be able to meet someone like you. To know others exist and to share similar experiences with. You know you can always find someone there that truly understands what you're going through having a condition so disabling you tend to lose most, if not all of your friends, some even lose family. Rather it be due to lack of understanding, lack of belief, fear, or any other list of reasons it seems to happen to all of us. So this is a way to make friends just like us. Friends that won't resent us for the physical abilities we have lost or the lifestyle changes placed on us by this syndrome.

Another reason is well because it's rare. It's surprisingly difficult to find any good information about EDS on the internet when you first get diagnosed unless you know where to look. In addition to this being a condition that lacks studies and research it's also extremely complex. In fact before being diagnosed, even with going to nursing school, I had no idea something this complex existed. If you are ever trying to find reliable information about a specific aspect of EDS it may be really hard to find, especially if the topic you're looking for is very specific. You can go into groups. A lot of individuals have certain documents bookmarked or saved in a word document or spreadsheet and can lead you in the right direction. If we can't find a study done in something we can also use support groups to do our own informal studies. Just simply create a pole and let everyone chime in. Before you know it, if posted in a larger group you'll go check out your pole and may have two or three hundred answers to your question.

Next, with EDS pretty much any body structure is a free game which means lots and lots of comorbidities. A good number of comorbidities are common amongst us which means we always have someone to relate to and ask questions to. In addition to this you can expand your groups to include groups for people with those comorbidities further extending your knowledge and possibility of friends. Most doctors don't know anything about these conditions so that leaves it to us to learn everything there is to know about it. When you finally think you have read everything there is on the web, others read thousands of sites or journals you haven't come across and ones you have read they didn't know existed so it's all about learning together and having people who understand.

Being a condition that is so very painful and severely affects sleep as well as causing many of us great depression and guilt for what we've lost and the deterioration our body has been through as well as the feeling of loss. We feel guilty for everything we put out families through, for needing help, for canceling plans and letting people down. Not only as if what we once were has already passed away but also the loss of friends, many times every single one we had before this illness and sometimes family members. We grieve the loss and are angry to learn that people we thought were our best friends and would never leave disappointed in us like a used paper plate. This is also the time it dawns on us how many of these people used us when we were healthy to provide them with things we need. Most of us have OCD or are on the high functioning side of the Autism Spectrum so tend to take responsibility and do things right, including not letting down our friends and family very seriously. Most of us thrive on routine and rules and chronic illness often gets to a point that a lot of this is no longer possible forcing us to make decisions last minute, change them or cancel them last minute, not be able to complete things by a time we have set for ourselves etc and that's really hard. It's helpful to know others who are or have been going through the same thing and to know you're not alone, not the one letting yourself and others down and to be told it's okay and it's not our fault.

The majority of us also have Medical Trauma Induced Complex Post Traumatic Stress Disorder. We spent years of our lives rather you're lucky and got diagnosis in two years or ate 70 and have spent the last 55 years actively seeking a diagnosis we all have to fight for one, to see doctor after doctor and oftentimes the worst part of it all, be miss diagnosed with psychiatric disorders such as anxiety and Conversion Disorders. These are extremely dangerous and life threatening diagnosis for us because it essentially closes the door on even looking for a cause of what is going wrong with us. Conversion Disorder is a Diagnosis given after all other conditions have been ruled out the problem is, doctors use it as a crutch to not have to deal with us. We are also superstars, especially in the beginning at having beautiful results when it comes to basic blood tests such as a CBC. The problem is, again, doctors are known to cut corners because they like the majority of mankind are lazy creatures who tend to want to just get the job done. It doesn't matter if it's thoroughly done and done with utmost care to put as much effort into it as they can, it's just done and to them done is good enough so they do the common tests and call it done, close the book and slap a label of conversion disorder on us that follows us around for life for every other doctor to use as an excuse to say they are done too. It takes years to find a doctor who is in it for the better of the patient; one who is up for a challenge; one who is willing to do more testing and testing that is more advanced and most importantly, a doctor who believes us and is willing to go the extra mile. It's when these less common tests like a Tilt Table Study, Gastric Emptying Study, Urodynamics Testing, Upright MRIs instead of doing them in the prone position, Sweat Testing, a Sitzmark Colon Transit Time Study, a 24 hour urine test to measure histamine levels, skin biopsies and ultimately EDS Testing via either the Brighton score system along with a through study of the body and some questions used to determine a positive or negative diagnosis or Genetic Testing to determine a type of EDS that has a genetic mutation that has been discovered. Not all forms of EDS have had their genetic mutation discovered yet which is why the other study is so important. There are more tests that can be utalkzss than the ones mentioned but as you can see, none of these are tests that are done on a routine basis and a lot of doctors don't want to deal with them slapping the psychological, "all in our head" diagnosis on us prematurely.

This results in us without a diagnosis for what we have going on with our body. When this happens we aren't receiving treatment for the symptoms we are experiencing allowing them to escalate. To make things worse we are often given the wrong treatments, handed antipsychotic medications that cause even more adverse symptoms and don't work. When they don't work the doses are increased higher and higher resulting in more to go wrong with our bodies. This also closes the door to treatment causing doctors and hospitals to dismiss life threatening issues, sending us home when we are actually so sick we should be in the ICU. I myself was declared clinically dead at least 10 times before my diagnosis, four because my heart stopped and I went into cardiac arrest and the rest because my blood pressure would drop below 60/20 which in the medical field is a pressure that is considered legally dead. With all but one of these I was sent home within an hour to a few hours of it happening simply told that was weird and sent home on paperwork for Conversion Disorder, Hypochondriasis, or some other psychosomatic disorder and is I was lucky this would sent me discharging me with a diagnosis of low blood pressure and that was that. One of my codes my mom was in the room, thank God for her. When I code no one came. My mom went running down the hall begging for help pleading for a nurse to help because no one was running to my room. The nurse told her I'm probably faking it and just pulled my leads off and told my mom just to ignore me because people like me feed on attention. My mom ran back to the room and thank God had some medical training as a girl scout leader because she had to take first aid and CPR. My mom brought me back. The nurse walked in right after and checked my wires. They are still in place. My state as well as several others protect their medical personnel against malpractice suits so there was nothing we could do. I've been sent home with gastric ischemia which is a life threatening condition where the blood pressure increases to dangerous levels in the intestines. It can cause the pressures to get so high it bursts and dissects blood vessels in the intestines causing a person to bleed to death. I was sent home with a diagnosis of General Psychosis and Anorexia as well as treated for anemia and vitamin deficiency. They blamed it on anorexia, not the fact I physically couldn't eat and was having bowel movements that were nothing but pure blood that everyone. Refused to look at. I had an allergic reaction so bad it almost killed me and was sent home diagnosed with conversion disorder and sent to my doctor who wanted me in ICU but upon refusal from the hospital to see me again even with my vitals so poor my doctor had to take care of me basically sending me home with what I called a take home hospital and working with my mom over the phone to take care of me available all hours of the night. I had a nurse try to give me 50 times the dose of this same medication that caused this. Been sent home with intestinal blockages, hernias, extreme dehydration, a UTI after they said the results came back negative only to get them in the mail a week later to see they were positive and by that time my UTI was so severe I had a kidney infection and was in kidney failure. I've sat there days and nights in a hospital bed where nurses refuse to answer my call light saying I have a conversion. Disorder, don't need to be there and I'm wasting their time and resources taking up a bed for someone who is really sick and that they won't be coming anymore the rest of the night not knowing I was one of the sickest ones on the ward and just misdiagnosed. I've had nurses rip IVs out of my arm, ya know how they push you to your car when you're released? There are a lot of times they pull my IV, tell me I'm not sick anyway and can do it myself having to take multiple trips to get my personal belongings out of my room. When I lost the ability to walk I had multiple doctors tell me I could and would pick me up, put my feet on the ground and the. Let go of

dropping me on the floor. This happened a lot at OSU with their doctors. Again and again dropping me and seeing I didn't have that natural response to catch myself and went straight into the hard tile floor with my fragile and damaged connective tissue would they say hmm. You really can't walk then send another doctor in who would do the exact same thing. I got picked up and dropped four times by four different neurologists just in the first week of being paralyzed and it's happened time and time again after that at other neurology appointments. I could go on and on. This is the stuff a lot of us go through. It's extremely common with EDS, most of us have complex PTSD.

Most of us have an extreme fear of going to the hospital because that's when we are at our worst and at the same time, a time we get treated worse than anywhere else about our chronic illness. We go in knowing it's a game of Russian Roulette with a really high chance we will be sent home sicker than I came in. Worst of all, there's no way to treat our PTSD because it had to be treated by a doctor, the people we have the least trust in. Not only that but the cruel mistreatment never ends. Every hospital visit. I have had good nurses before but I have never gone to the hospital once where I can say everyone was good. I hear a lot of healthy individuals say endless good things about the hospital staff they had or they have some reason they have to go. When you have a rare invisible illness like EDS we aren't given that same care. The appalling lack of medical care never ends therefore it's impossible to even treat our PTSD. It's not like someone in the military who is in a war and when the war is over, it's done, they never have it go back and can get treatment and start to heal. It's like having to live the rest of their lives in that war as a POW who has been captured and imprisoned by the enemy and every time they get out they are found and imprisoned by another enemy and another enemy and then going to see a psychologist who happens for this only to find out the psychologist is one of those enemies from the other side who captures and holds others line you as POWs yet wants to try to help you get over everything that has happened to you even though you're still occasionally been tending by someone else and beat up before getting away again. Seeing a psychologist for us just doesn't work. We have no trust in the medical field and the gross mistreatment and lack of care is never ending. The EDS community can relate to this when one else can. While the healthy people we know, the people we grew up with, who became nurses and doctors themselves get mad telling us those doctors and nurses are heroes, they can do no wrong. That stuff doesn't happen, they are made up of the most caring and compassionate individuals. Those in our community and other rare or invisible disease communities know that degree of mistreatment all too well. We know the truth about the medical field.

We know they are no different than any other company. Identical to the people making minimum wage in a more trivial position such as a greater at a retail store. There are the good ones who take their job very seriously and want to do their job to the best of their ability truly valuing hard work and are highly motivated individuals but most people at a job are just working because they have to. They have bills but if they were multimillionaires there's no way they would be there now. They want to get the job done and go home. It doesn't matter how they get it done, it's just got to be done. These are quantity over quality people. They take working smarter not harder totally wrong, defining it in their mind as taking any short cut necessary to get it done. Ya know how at most jobs they would have, for example, 50 people but there are three of them that seem to pull all the weight. The three everyone thinks takes things too seriously because they hardly leave their desk or station. They don't take the time to walk around socializing and joking around with their peers. When things get behind they are the ones who stress and work really hard to get things caught up where others say I'm not getting paid any more, I'm not going to bend over backwards and stress about if they aren't paying me more. The three people first to volunteer for overtime and the least to grumble of the boss asks them to stay over another 15 minutes to finish something while on the other days a boss May say that if you get your work done you can go hike and everyone rushed to gst the job done to get out the door while those three are left sitting there at their desks to get the job done right whole also correcting others work that was hastily submitted so they could go home or start the weekend early. Just because someone is in the medical field doesn't make them any different from those who hold other jobs. If most of them won five million dollars they would be out of there. Forget the two weeks notice, heck they don't have to work anymore. Someone else can take their patients. If they're told its slow and they can go home when all the patients are out then one more comes walking in the door as they are packing up their stuff there are a lot if doctors will look to the people who are still working and say hey, I'm about to head out of here, do you mind taking this last Patient? It's human nature.

As generations have gone on more and more people are lazy and the medical field is no exception. When you're chronically ill and have spent a lot of time in the hospital it gets really easy to spot those three people. The ones who if they were multimillionaires may cut back their hours but would never dream of leaving their job because their job means more than money to them. They take great pride in making people better, getting them diagnosed, saving lives and they can't see life another way. Those are the good ones. The good ones line any other job. They are far and few, they pull all of the weight, are walked on by other staff members, their managers usually fail to see their accomplishments as they don't spend a lot of time just hanging out with workers at a patient's expense. They are the ones who will advocate and fight for their patients to all ends but like any other job, maybe five percent or one percent or any other single digit percentage of the employees are these people so EDS patients my get one person on their care team that is amazing, maybe two but will never get a whole care team and it seems like the good ones get more far and few the higher the position. I've had more caring and compassionate house cleaning staff. STNA's, more good STNA's than LPN's, more LPN's seen to be there for the patient then RN's and more RN's. Doctors.

I don't think I've ever had a bad Volunteer at a hospital. The volunteers just love to be there for the patients, to put a smile on their faces and to know they made a difference in our lives. Rather it be to bring us a coloring book and crayons, their Emotional Support Dog around to visit us (which is my favorite) bring us a warm blanket or fill up our water containers. I've had one bring me a card and a flower in a small tube of water. The volunteers are there because they want to be there, not because they have to be there. It seems like the higher the person is on the pay scale the more people are in it for the money. Money talks even if it's at the patient's expense and usually if you have a complicated or invisible illness like EDS you are the expenditure. A community is important to know we aren't alone, to share their experiences, some in the group have become medical advocates and will fight for others in their area who can't get the help they need. These advocates, especially the ones with lots of training are invaluable to the EDS community. They may not be able to fix our problems but it's nice to know there is someone out there who tried. When you're at your worst advocating for yourself is extremely difficult and sometimes impossible and oftentimes our families don't do a lot of research on their own so aren't able to advocate for us so having someone who can is more beneficial than words.

As you can see there are so many different reasons community is important and vital to all of us. Some use it simply as a way to relate or a way to make friends like them after losing the friends they had before their health declined to the extent their healthier friends no longer could relate to them and left. Many are involved in the community to gather information and gain knowledge about their conditions. Support groups are also there to talk, especially with so many who have PTSD. We can't trust a psychologist, psychiatrist or therapist as they are medical professionals and talking to a live person is more fulfilling than writing a journal that no one reads. Sometimes it's as if these individuals, having gone through this themselves, know just want to say and how to help us. Some are there as a medical advocate in their area. Someone who can be there for them in medical situations or even just to give them advice as to what to say to make doctors listen, direct them who to contact if they aren't receiving appropriate care and what to do or ask for from our medical personnel. Some even use these groups to find names of doctors that work with EDS patients or places to go where they may be able to get help or even ideas of what treatments work for others with similar comorbidities. There's even a few groups out there run by people who were medical workers before EDS ravaged their body to an extent that they had to leave the field. It consists of disabled nurses, doctors, radiologists and various specialists. This group works to tell us if we need a second opinion. We can post test results or imaging onto the page and since legally they can't have a diagnosis since they aren't currently working they give what's called a "non expert opinion, telling us what they see or would suspect and if we need to see someone else. I find all of these viral and that's why I see the EDS community as not an invaluable and essential part of my life and wellbeing as an individual with Ehlers Danlos Syndrome.

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 30 Prompt: What is EDS ECHO

Medical professionals, If you or someone else wants to learn more about Ehlers Danlos Syndrome or know another medical professional who does or simply are or know someone who is a doctor that is very well versed in EDS check this out. You could be helping thousands get the medical care they deserve. Check out the link below to learn more about the program.

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 29 Prompt: Research Hopes for the Future)

My hope for the future with the use of MRNA vaccines is that this type of technology continues to grow. You can’t fix defects in DNA but if they were able to make more immunizations or even put the technology into pill form that can make up for a loss of a gene mutation or make it so the expression of the gene mutation isn't so severe it could help a lot of people so though I don’t have hopes for a cure for EDS I hope for awareness to spread and more science to be done to potentially find a treatment that can affect how the gene is expressed to improve our symptoms, make our tissues improve our overall health even if it means taking a pill every day for the rest of our lives or shot every three to six months this would be a huge thing, save a lot of our lives, prevent a lot of surgeries and give us our lives back. I’m not asking for perfection but if they had a vaccine or pill that could make us 50% better, 50% less likely to have life threatening conditions and gave us 50% of our lives back, that would be huge!

https://www.cell.com/molecular-therapy-family/molecular-therapy/comments/S1525-0016(05)00870-1

This is juat a blog and as you may or may not know, blogs don't hold the same credibility as medical journals however its still a good read and breaks things down to make it a lot easier for an average person to understand.

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 28 Prompt: Acts of Kindness)

Acts of kindness really mean a lot in general but they are especially noticed when you are chronically ill. You really learn to appreciate the small things like someone opening a door for you or if they see you trying to reach something, offering to grab it for you. Many people will literally avoid eye contact with someone in a chair because they think their kind by not starting but being kind is saying hello. Being home and lonely all of the time it's nice to get a letter in the mail or some visitors now and then but forced kindness is on the other end of the spectrum where you have people you haven't seen or spoke to in years all of a sudden ask if they can visit when they see I’m in the hospital. I have had this happen before where I hadn't seen or heard from a family member in a very long time and they have never acted like they cared before but the minute I am paralyzed they come to the hospital to visit and it's quite obvious that they are being nosy instead of kind lol but the little things mean a lot.

If you know someone who is chronically ill you don’t have to spend a lot of money showing them you care. If they don't drive, offer to take them to a doctors appointment a half hour away. A half hour there and a half hour back isn't going to use that much gas unless you’re driving them in a massive truck or a camper. Maybe if you have a neighbor in a wheelchair and you notice it snowed a lot that night, you don't have to shovel their driveway. Kindness can be as simple as getting their mail out of their mailbox and taking it up and putting it between their door and screen door then shooting them a text to tell them their mail is in the door. You don't even have to talk to them if you’re busy, just drop it in the door and I can guarantee they will appreciate it. Kindness can be bringing someone some food after they get out of the hospital so they don't have to cook that night. Maybe it's been really nice out and you normally see them sitting on their back porch during the summer. Kindness can be as simple as giving them a call to see how they're doing and make sure they are okay, if they're up for it, going to their house and watching a movie on Netflix with them or coming over to paint their nails or do their hair. If you are picking up your meds and know someone chronically ill who lives in your housing development or on your street and they use the same pharmacy, kindness can be calling to ask if they have any prescriptions you would like them to pick up while their there and drop off to you.

If you're going out somewhere that isn't too overwhelming like say you know they like to go to church and you both go to the same church offer to come pick them up and go to church with them or if you know they like to do art and you like to do those painting lesson classes which are pretty low key, ask if they want to go, maybe you both have a dog and can offer to take both of them to the dog park. You don't have to spend money but of course if you do go that route maybe pick them up some groceries and tell them not to worry about it. If you want to get them a gift for their birthday or Christmas consider something that will aid in their comfort like maybe they wear a wrist brace and their is just basic black and you’re out somewhere and see one that's pretty with flowers on it or paisley or what not you can pick up that so they don’t have to feel as sterile and medical. Maybe a heating pad or an aromatherapy machine or a new soft blanket or some fuzzy socks. If you craft, maybe knit them a blanket or sew them something to make their medical devices less sterile like a seat cover for their wheelchair or a zipper pouch for their walker.

Kindness goes a long way and we don't have enough in society one thing that I really think of as kindness when it comes to me, being immunocompromised and with the pandemic going on now is when people put their political views aside and wear a mask to the stores or when their out. You don't know if someone is immunocompromised. More people than you think are immunocompromised so you have probably passed people with weakened immune systems almost every time you have been to a store. If you don't want to wear a mask for yourself, wear a mask for them. They may not be able to be vaccinated for medical reasons or get the vaccine but have no idea how much immunity they got from the vaccine. For all you know they could be fully vaccinated and have less immunity than someone who is healthy and hasn't been vaccinated at all so wearing a mask for these people shows you care.

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 27 Prompt: Supports/Aids

When you are prone to subluxations and dislocations, you ever know what is going to come out of the socket next. Below is a picture of all of my supports and aid which I may need at any given time. I currently have three new braces needing molded as we speak but I have not gone back to get them casted. They are for AFO leg braces, Night Splints, and a hard shell back brace. My doctors have recommended finger splints, especially for writing as well but this is something that isn't covered by insurance so an investment that I have not made.