My life with Ehlers Danlos Syndrome and Comorbidities.
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To end the month off right I'd like to share another piece of art I made for EDS Awareness Month it's a bumper sticker I made for my power chair on my Cricut Maker.
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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
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Why the Zebra? Why does a health condition have a mascot. Where did it come from, all of these questions and more can be addressed by Clicking the link below to see a Victor explaining the Zebra behind Ehlers Danlos Syndrome.
Also ransom fact. Did you know Zebras have stripes to keep pests off or them? They mess with the vision receptors in flys and other insects so they don't want to land on a Zebra. Cool huh?
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EDS can effect you both physically and mentally. These explain how EDS makes me feel.
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I've joined EDS Connect, it's basically a newsletter to keep us up to date on matters relating to EDS, share stores and provide information. I was challange to ask five of you to join... I may ask more of you just because it could be beneficial to you guys so here goes. I'll post the link below. I challange Emet T, Cheryl H, Amanda S, Kate B and Carla S
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If you have EDS, check it out. Join the register and do your part to help the community. I joined a few years ago and they don't bug you or flood you with emails. You can also update it whenever you want to.
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Good news. After encouragement and handing my doctor a brosure for EDS Echo he signed up. My doctor has recieved the materials. Now EDS Echo has a training program for nurses and other medical personel. I encourage those if you who are nurses to look into this program and learn more do you can provide better care and advocacy to your patients and consider also sharing this with your coworkers and adjunct doctors.
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Just a piece of artwork I painted for EDS awareness month. I'm not an amazing arrest but I'm very happy with this regardless.
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Make EDS a national holiday. Here's how. I've submitted my request to the Governor. We need the world to be aware zebras do exist
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Not all health conditons 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 conditons 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 Hemmorroid 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. Unfortunatly you will have to see them in my Facebook post because I can't figure out what I did wrong for Tumbler to not allow me to post it here. I tried for four hours and give up lol so follow the link.
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For this challenge is called "Words for my younger self"
I like this topic because though I don't have any regrets per-se there are things I may have done differently had I known what I know now. I was always an uptight kid. I grew up early because of my health issue even though they were nothing like even remotely similar to what I'm dealing with now. I also grew up fairly quickly because of my siblings. They have always been very troubled kids. Their mom was someone who uses medications that aren't hers that she buys on the streets with multiple mental health issue including Schizophrenia and Bipolar Disorder.
My dad tried to get custody of them when they were kids but whenever we went to court their mom would go back on psychotropic medication and bribe the kids to lie in court to stay with her so my dad never got full custody or the chance to rehabilitate them. I remember being about four years old and my parents telling my sister to take me and we could go up and down the elevator while they talked. It wasn't busy but when I was a toddler elevators were fun. She was 13 and taught me how to jump while it was moving so that kept us entertained.
Throughout the rest of my life they would occasionally come and stay for visits. Every single time they came they would show up with lice. My sister sharing a room with me would give me lice every time and she was so used to them she didn't even itch her head anymore and my mom could hardly see her scalp at all because it was so thickly covered and overrun with lice. It very quickly got to the point where if they came, my mom bought Nix and would have a chair set up in the driveway when they got here, refusing to let them into the house until she treated them. Even though I haven't gotten lice since I was about seven because of my mom doing this I still have an extreme fear of lice I carry with me to this day. If my head itches for any reasons I still make someone check my scalp. I get hives on my head from Systemic Mastocitosis all the time and even if I feel the bumps of the hives I'm asking someone in the house to check my head. Even though I haven't had them since I was seven my sister gave me, in some sense, some kind of PTSD. I guess you could say being a child with OCD and her giving me lice. I didn't even like my niece and nephew coming in without their heads being checked when they were in elementary school just because lice are so common in kids. But my brother and sister were raised in this situation with their street medication seeking and psychotic mother who was having hallucinations and delusions, crying and telling the kids to hide the illegal medications and hide because there's a police rade and they are looking for them and those substances even though no one was there or she was letting the kids run wild. The house was filthy with piles of trash and they had the water and electricity turned off a lot.
Their mom didn't require my siblings to go to school so whenever they came here it was constant arguing and hatred towards my mom, their half mom or step mom or whatever it's called. She did what was best for them, sent them to school, made them do homework, helped them with it, didn't let them just run the streets and this turned into physical anger. My mom was hurt by them throwing stuff at her, slapping her and everything else. It got to the point that my mom was scared of my brother and one day we were outside. I was four and he was 12. He's jumping back and forth but he took me behind some pine trees and beat me. Of course I went in the house screaming bloody murder and my mom pulled up the back if my shirt and noticed he had bruises my back. Not just a small bruise but he beat me so hard my back had a handshakes bruise. That was the first time he went to Juvi and the start of his prison career. Every time he gets out by faking becoming a preacher and being a changed man, he gets put just to go right back in. He's been playing this game since his first time in big boy jail. He was diagnosed as a psychological liar and my sister who was also very much trouble, beating kids up at school, pushing a teacher down a flight of stairs, having no motivation to work or raise her kids even when she got older and still bring big on parties and promiscuous related things later got diagnosed as Bipolar but refused to acknowledge the diagnosis or take her medication for it. I had amazing parents but again remember I was OCD. I took this all in and dubed not to be anything like them. Though I was the youngest by 9 and 10 years, I assumed the role of the oldest sibling. This made things especially tricky when I was in school because I was such a square. I didn't really enjoy a lot of the kid kinds of things and my OCD got worse so I developed a fear of getting in trouble because I saw getting in trouble as being like my siblings.
Why did I just write a big story about this? Because if I could go back and talk to myself as a child I would have told myself to live a little more. That it was okay to play and get into things more kids would get into. To be more social, especially with the people who didn't act older than they really were and learn to be a kid from them. I would tell my younger self what I was diagnosed with and tell myself to push my mom harder for a diagnosis and not to settle aid if no one wanted to deal with it, don't wait until the next catastrophic thing to go wrong with my health to see a doctor and to keep trying. I got my first traumatic brain injury being bullied when I was 12. I would have told myself to fight back and reassured myself that if I did it wouldn't make me like my siblings and that it was the right thing to do. I would have told myself I was too nice and for that most of my friends weren't really my friends. Especially in highschool. My mom would tell me all the time my friends were using me rather it be for free rides because I was the first one to have a car or when I was younger, because I had a pool. I thought I had friends but what I really had is people who wanted to use my pool or for a ride home or to a football game or to get food after school even though I had Celiac disease and couldn't eat myself. Being the first one of anyone I knew to get a job I was the first one everyone asks for money. Though my mom would tell me my friends were using me but that's not the same as if you tell yourself that.
Now most of the people I still talk to are actually people from elementary school. I would have told myself to meet more people so that I had a chance to meet more who didn't use me but of course as far as high school goes, I think that's just part of highschool, the years when most kids will do whatever they can to avoid doing things with their patients or family even if it means using their friends to get their needs met. I think I would have joined more school groups. I would have been on the swim team but I didn't know we even had one until almost the end of my senior year so I can't go back and do that but I would have liked to do more and explore more.
Upon graduation the same goes. I was such a tight wad I paid for my house outright and college without taking out a loan. I think if I could talk to my younger self I would have told myself to take the risk and take out that loan and used some money to travel while I still had the chance yet at the same time I'm glad I didn't and I got to spend a lot more time with my grandma and dog before their passing. My grandma was so important to me. I really wish there was something I could have done to push a diagnosis, at least back when my heart stopped for the first time at age 17. Age 16 was really tough too with all of the hospital trips for trouble breathing and chest pain which was the time I was diagnosed with Hypochondriasis and banned from Mount Carmel East. Even now I wish I could send a letter. To every doctor I've ever had to tell them what they have done and how much damage they caused but at the same time I feel like this would do no good anyhow because they knew the risks they were taking in doing the things they did but chose to do so anyhow so they could probably care less anyhow. You can't make a person with no heart gain one so I don't even know if telling my younger self or mom to fight for a diagnosis earlier would have helped anyhow. I feel like other factors would have to have changed other than a pep talk with myself but it's still interesting to think about. One thing I wouldn't have done is discourage myself from doing sports, I just may have chosen different sports. Color guard was great for me but I should have avoided things with a ball. I'm not sure about the martial arts aspect as the memories were worth the risk. Another thing I would have totally done is train Sandy as a service dog. She would have been amazing.
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With having a disease in which such little is known about it I can definetly say, I've got a lot of hopes for the future, especially future generations diagnoses with EDS. You guys know the things I got through with this rather you believe the medical abuse and neglect is real or not others with EDS know that if anything I'm downplaying the extent of it so my hopes for the future is that this condition is incorporated into medical school training requiring a very minimum of one week spent on the topic of EDS and much more in anatomy on the functions of connective tissue as well as connective tissue diseases as a whole being discussed more in school. Another more immediate hope is that schools totally throw out the zebra and horse teaching mindset and quit educating students to only focus on common diseases. Even what little schooling I had it was as if they were telling us rare diseases don't exist at all. They totally discourage us from even thinking about rare diseases. I remeber being assigned to study and write a report on one medical conditon then speak about it in front of the class. The teacher said we could pick any one we wanted. Everyone in the class chose more common conditions like strep throat, upper respiratory infections, breast cancer, and a ddw other more common cancers, heart attack, pneumonia, the flu, diabetes, high blood pressue etc. I went home and searched the web for rare diseases, this was even before I knew I had a rare disease myself. I read up on several and came across one that seemed particularly interesting. Trusomy 13. I wanted to choose someting rare because I feel like the common ones have enough recognition, enough financial backing for research and frankly we're too easy. I wanted a challenge, I wanted to speed the word about an underdog in much news of awareness and to spark interest amongst my peers who may spread the word. Trusomy 13 is one that often takes the life's of an individual on infancy and causes a lot of complications so this is what I chose. The day the teacher went around the room asking all of us what we chose she got to me and I told her. She pauses and said don't you want to try something more common like everyone else? I said no, I like the challange. She said well I would really encourage you to pic something else like how about heart disease? Theres a lot of good information put there on that. I said no that's okay, I like my topic and I'll be able to find enough information on it. She then asked me to speak to her after class. After class she said look, I need you to pick a different topic. I asked why. She said because it's too hard. I told her to trust me I can do it. She then said that conditon is so rare I've never even heard of it in my entire career. I don't know what it is or anything about it and theres no way for me to be able to grade your report on a condition I don't know anything about. That's whan I said well you said we could pick anything at wanted. I picked something I find extremely interesting and that's what I want to do. Besides if you don't know anyting about it you can learn someting new. After a big more of a debate, reminding her several times that she said we can pick anything and that even if it's not common it exists she finally I think, realized she wasn't going to change my mind and caves so that was my report and I aced it. Just because someting is rare doesnt make it unworthy of being taught in school and by telling medical students not to even consider a rare disease in a patient is just setting the patient up for misstreatment by medical personel. One in 10 Americans live with a rare disease so allthough each disease may be rare, actual having one of those many diseases isn't all that rare itself so I hope this mindset is no longer instilled into the minds of students and it's removed from the corricilam.
In addition to changing teaching to no longer encourage students to only look for what's common when diagnosing a patient I believe they also need to crack down on and better educate on how to properly diagnose conversion disorder or what ever word they happen to use for it at the time and really any psychosomatic disorder as a whole. They need to teach then not to use it as a crutch for their lack of knowledge and address their egos making sure they are aware that not everyting was addressed in medical school so they in fact don't know everyting and shouldn't behave in a maker in which they think they do and in these cases where the patient goes years and years with going to doctor after doctor for help to listen to them. I also believe they should ban anyone without a psychology degree from being able to diagnose conversion disorder. If they would like to send the patient for a psych consult or they would like to simply state in the referral "suspected conversion disorder" or please assess patient for a psychosomatic disorder fine but in no way should diagnose it themselves, or write long notes about the patient to try to persuade the diagnosis. If someone were going to trial in court for a robbery you wouldn't allow the plaintiff to talk to the judge and jourey before the hearing allowing them to speak without the defendant present in order to persuade them to rule in their favor before the hearing. They want a court hearing to be unbiased a psychiatrist or psychologist should be able to unbiastly assess a patient and make the decission on their own.
Medical personel should be very throughly taught the dangers of an incorrect diagnosis, espexially a psychological misdiagnosis and the tendencies for this misdiagnosis to follow them around throughout their lifetine even if it was proven a misdiagnosis just because it was a diagnosis written in stone at one point in their life. They need to know how this can totally ruin the care a patient. If they do this and it's a wrong diagnosis they should be required to have all records be amended by law if something like this happens and is later proven to be a false diagnosis. This is why this kind of diagnosis is only safe in the hands of someone who has spent a large portion of their schooling learning it from inside out like a psychologist or psychiatrist. This is my hope for the future. No one should ever have to go through what I went through and every other EDS patient I have ever known has gone through and likely will go through the rest of their life because misdiagnosis it not medical personel use this label as a crutch. A crutch they permenantly brand is with. Conversion Disorder and "I don't know" are not interchangeable and and should not be used this way. If a doctor does this I believe they are breaking not only the code of ethics but also their oath to do no harm and should have their license revoked. They may not be killing a person directly but by labeling them with this because they don't want to deal with it follows the patient around for life, limiting their access to care, prolonging a proper diagnosis, postponing treatment and ultimately taking years off of their life and forcing them to suffer so in the end you have shortened their life and made them live much sooner lives then they would have otherwise because you couldn't work yourself up to say you didn't know something.
Medical field asside, in the future I hope to see massive changes to insurance. Make all insurance equal like that if medicare for all so that more people are having issues with coverage and someting has to be done about it. The flaws in Medicare exposed and resolved. I would like to see the formulary overhauled and at the very least EDS added to it but what I would aultimatly like to see is a person's eligable for a medication no longer based off of the condition they have but based on the symptom they are experiencing. If they remove eligability based on condition, this will remove discrimination based on disorder resulting in people with rare diseases not being denied necessary treatment. Not long ago insurance companies were allowed to deny a person coverage if they had pre-existing conditions but when they took that away the formulary got tighter as a result. This allowed them to insure everyone so they had a physical card stating they had insurance while still denying a large portion of the sickest access to treatment. Obama seemed to try to resolve this. Things were far from perfect but it had improved but then when trump stepped into office to change medicare he ultimately further tightened the formulary as it pertains to rare diseases patients making it so that its nearly impossible to dispute denials. We used to be able to dispute them, a doctor would send in some medical documents showing the effectiveness of a medication, treatment or surgery or explain why we another medication, treatment or doctor would not be appropriate and it would be approved but now it's nearly impossible to have the decission changed when filing a dispute. Now what the formulary says goes no matter what if you're rate and don't have the FDA approval for that medication being used for that purpose causing rare disease patients to be out of luck, forced to be treated with something not likely to work, someting that can cause more harm to the body in the long run, someting that can improve one condition but worsen another or simply not recieve treatment at all so my hope for the future is for insurance to be changed for the better. Not just for the better if EDS patients but for the better of all rare disease patients.
Next I would like more awareness and financial backing provides to the Ehlers Danlos Society and other places needing funding for EDS research as a whole. EDS has no cure and no FDA approved treatments. I would like to see this changed. Very little is known about connective tissue. So little in face that scientists don't even know what it actually is. It wasn't even suspected until 2018 that connective tissue may even be an organ and we still don't know for sure. It was also discovered that nerve endings may actually connect to connective tissue and those tissues are capable of feeling pain from damage to them. It was thought for years EDS patients don't have pain and that that aspect was all in their head until that recent discovery which now ranks it one of the most painful diseases a person can live with. With 2018 being really the tip of the iceburg knowledge about the conditon we are hundreds of years behind on the knowledge other diseases have and hundreds of years behind on research. It's like living with Type 2 Diabetes or Breast Cancer in the 1700's. I would like more awareness, more education in schools as more financial backing to be supplied to this disease. I don't want to have this condition labeled as the most ignored (I used ignored because it won't let me use the actual word for uncared for) medical condition in modern medicine. It has held that title since 1965. It's held that title for 55 years. The most neglected conditon and nothing has been down to change this over the last 55 years. Something needs to change. I also wish that a cap would be put on some conditons for research. Sure a cure would be nice for everyting but if there's a treatment that is extremely effective why not give give a percentage of that money to an underdog conditon. One that doesn't even have as much as one medication to help it in order to help them to try to catch up, even if it's just a little bit.
My hopes for the future are that these patients have all of this. They are believed, they are not treated like a psych case or a burdon, a diagnosis isn't delayed years and years, they have access to treatment even if it doesn't have FDA approval, recognizing this condition as a cause of disability, learning more about it and possibly just one treatment. Awareness goes a long way and it starts there. No one diserves what eds patients go through now and I hope no in in the future has to and they can seek medical treatment without fear, without being sent home worse then when they came, without being left without care, without harm from medical professionals and that they are held accountable but if course this would also involve a change in society as a whole as its not just medical professionals who are only in the career for the money, to get their 12 hours in so they can go home and to take short cuts and the easy way out. There's a lot that need changed but humanity also isn't what it used to be when people took pride in their jobs and wanted to not only get things done but get them done right.
Below are some pictures that show some of this. The last three to together and I'll explain these. It'd the McGill Pain Scale, a scale doctors use to tell them the average amount of pain a person with a speciffic condition is in. It has since been updated but at the time of the study posted in the two lower pictures the bottom scale was used and it's vary similar to the update one. CRPS is rhe most painful condition on the pain scale ranking in at a 42 out if 50. In the study below 273 EDS patients participated in the study taking the same test to measure the McGill Pain Index Ranking. Of all of the participants 89% of them were already on medication a for pain at the time of the study so we're tested based on their pain levels on medication. The results calculated their pain essentially on a good day during the week and a bad day. The average moderate pain (good day pain) came on with a median score of 43 out of 50. The high pain levels or (bad day pain level) median score was 45 out of 50. This was with 89% of them being on pain medications. Could you imagine the scores of they were weaned off of those medications or hadn't been on any medications when they were tested? EDS was not added to the updated McGill Pain Index for one simple reason. That being because patients were on medication for pain so it was considered to have flawed the results.
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My favorite corner: It may hit be my favorite corner of the house or even a favorite corner of a room but I do have a favorite corner. That's the corner of my couch. If I have to sit up I don't like sitting against the back of the couch like most people do. I like to sit in the corner so my back and left side are supported by the arm of the couch and my right side, back, shoulder, neck and head are supported by the back of rhe couch. I struggle sitting up and holding my head up so this position supports me better than sitting in my chair or even my power chair. It's also more supportive than simply placing my back and back of head against the cough kind if cupping my body do there isn't much strain on my upper body. It provides enough support they I can almost sit up in this one corner as comfortably as when I'm lying down so thsts my favorite corner in my house. Now if I could just take it with me everywhere I go lol.
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On good days I like to work on art it crafting like sewing which has to be done on my best days and rarely happens because it hurts my back so bad. Same with cookie and cake decorating but on my bad days I have several distraction techniques I can utilize as long as I'm not too far gone they include:
-Creating a new design on my Cricut Maker since it can be used lying down.
-Painting
-Playing repetitive games like Pet Parade (before the creators totally ruined it)
-Watch YouTube videos and on my worse days simple videos on YouTube like life hacks or Five Minute Crafts
-I like to read short documents, studies, or stores on line but can't pay attention to the longer ones.
-Have full blown conversations with my dog. Yes I'm serious. I love adding in as many words that she knows as possible even if it's a totally made up conversation just because it's so cute watching how interested she is in conversations tilting her head and grunting back
-Lastly, instigram. I like to watch your videos, painting, Hand Lettering and drawing videos these little short videos keep my attention and distract me well so thank you everyone.
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Movement Routine. Mine may be a little different this most EDS patients as I physically can't walk. Sitting believe it or not is extremely painful when walking isn't a choice I can also cause your muscles in your legs to contract due to lack of use and thats what I try to prevent with my movement routine. From past posts you guys know I rock to help with the pain but I'll also stretch. I'll sit on the floor with. My feet up against the table or a wall and sit up and lean forward careful not to go too over stretch to gently tug the muscles. I also have leg braces that lock my legs at the joints so my knees don't bend and they hold me in the standing position. Being something u don't do often you can feel a tug from simply distributing weight into your legs. To stretch then little further ill lean my elbows on the padio banister or with assistancw to make sure u don't fall, I'll use my arms to twist myself facing. Backwards with the rail so I'm facing my chair and very carefully put my hands into the frame of my chair so my hands go down a little lower and closer to my toes. I also like to do the butterfly stretch or put a blanket around my feet and pull myself down towards my feet. I find this easiest if I can get my heels on a pillow or some kind of ledge so my knees hyperextend and bend backwards a little so my knees don't bend when bend forwar. I'll also do this in my power chair by lifting the legs up and slowly pushing the seat back up further and further or by sitting on my manual chair and putting my legs on a patio chair then pull forward with the rails. Pulling my knees to my chest and trying to cross one leg over my in hopes my back will crack helps. For my arms ill put my arms out streight and pull up on my hand bending it at the wrist but being in a chair my arms get quite a bit of exercise. Every time I transfer is a type of movement too but that's some of the things I like to do.
I don't recommend lying on the floor with your legs in the W position like I did in one of these pictures but I think it feels good even if it'd not the best position for someone with EDS to be in.
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Next I'll discuss pain relief. I've reached a point in my pain journey where my pain will literally cause seizures, for me to go into shock and organ failure but here's some to the things I use in addition go patches peracribed by my chronic pain specialist. The meds aren't perfect. As mentioned in the past, an infusion of a medicine that starts with a Ket, has an a in the middle and ends on a mine is the only medication that really helps EDS pain however my insurance won't approve it nor did they approve many of the other meds that my doctor attempted to prescribe. What was approved, several I had an alergic reaction to and having the MTHFR gene mutation my body is unable to absorb and use a lot of medications properly so they simply didn't work so now I'm on something that that helps but isn't even meant to be used for EDS so this does take the pain down to a level I don't have the seizures, shock and organ failure is controlled but I'm very much in pain day in and day out. If I push myself too hard the pain still gets to the point where it will make me sweat, get paingry and pass out but it's better than it was. For the breakthrough pain I have found Salonpas patches to be the most helpful OTC medication I have found. For migraines I have found taking one ibuproffin and one acetometaphin together instead of two of one or the other works better. This is going to sound awkward but my dad gives me back massages and presses oh my back. My doctor have tried to get me into massage therapy on the past but no one seems to be able to take my insurance and I have no response from acupuncture, even with electrical stemulation of the needles and a chiropractor damaged caused more harm than good causing furthering degeneration if the disks in my spine and damage to the nerves running through the spine. The short time I was in Manual Manipulation Therapy was the closest I came to waking but no one outside the hospotal will take my case since PT paralyzed me. I used to use heat but now hear will inflame my nerves making the pain signifigantly worse so I now have to use ice. I'll take turmeric to also reduce the inflamation though I'm not sure how well it really works. If I'm in a flair I'll switch to an antiinflamitory diet. This too in not sure how much it helps which is why I'm not on it full time anymore but I figure it can't help. I have one of those hand massages that I will use to loosen the muscles in my back and really interested in getting a massage gun in the future. A big one for me is rocking. Sure it makes me sound crazy but not being able to walk is extremely painful. I used to be a pacer and in highschool and college my family would find me in the outside in the middle of the night pacing. My mom thought I was sleep waking the first time but soon learned this was my new normal. Nerve pain literally makes me squirm and I feel like I have to move so that's what I would do. Same concept with rocking. It keeps those nerves moving to some extent. Stretching also works similarly plus or stretched tight muscles. I've also used the vibration feature on my bed because with nerve pain also comes the most irritating issue you would ever experience. The feeling of thousands of miniature bees crawling under your skin constantly stinging you so the bed vibrating kind of adds movement to make it harder to notice the crawling and tapering it down by maybe a tenth. Lastly braces. My back brace, neck brace, leg brace and abdominal binder, as much as I hate them because their big, bulky and isolate movement, they help with some types of pain as well.
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What does Zebra Strong mean to me:
To me being Zebra Strong represents the battles we have been through and the years we spent seeking a diagnosis. It represents all of the misdiagnoses, especially the mental health ones like conversion disorder that many of us have heart too many times. Our records botched with that name sometimes hundreds of times. Zebra Strong represents the medical abuse and neglect we have recieced for years and the doctors who gave up on us or never even tried deeming us someone else problem. It represents the times we were sent home from the hospital sicker than we went in. Zebra Strong is symbolic of the friends and family who gave up on us, who realized we would never get better and disposes of us like a used napkin. It represents everything we have lost; our jobs, our physical abilities, our homes and the lives we used to have. We have lost our old self and had to learn to take this new, very broken and far from perfect version of ourselves and learn to love it or at the very least accept it. We had to learn that it's okay to ask for help and and the concequences of pushing ourselves. We have had to learn to love the little things, to fight for our rights and to educate people with a PhD. Having EDS, a condition that is considered the most under treated due to ignorance medical condition in modern medicine and one few know much about isn't easy. We have been through more than most could ever imagine, and things like these are what make us Zebra Strong and thats what Zebra Strong means to me
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