eds-zebra-warrior

[eds-zebra-warrior]

EDS Awareness Month Prompt 19 (EDS/HSD in One Picture)

The picture that I think best describes EDS is this one. It encompasses both the physical aspects of pain as well as multiple types of pain as well as the psychological aspects such as the guilt, loniliness, and shame.

[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.

#myEDSchallenge #myHSDchallenge

[eds-zebra-warrior]

Ehlers Danlos Society Awareness Month (Day19 EDS/HSD in One Picture)

If I had to choose a photo that disceibe EDS the best I would choose this one. It descbes the multiple forms of physical pain pain, mental pain, usolation, shame, guilt and more all in one pictire.

[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.

#MyEDSChallenge #MyHSDChallenge

[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.

#MyEDSChallenge #MyHSDChallenge

[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.

#MyEDSChallenge #MyHSDChallenge

[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.

#MyEDSChallenge #MyHSDChallenge

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 26 Prompt: Self Care

I have already explained a bit about my self care techniques in another post so this one I will post the importance of self care. Self care is one of the most important aspects of having a chronic illness, especially once you reach the point that the symptoms are disabling. Ignoring symptoms and pushing on once your body says it's done very quickly deteriorates your conditions further. This is something you have to be very conscientious of especially in the beginning when you are reaching that point where you can no longer work.

I did this. I knew I was very sick but had no diagnosis and every doctor I saw said nothing was wrong with me so I would try to brainwash myself into believing this too. It got to where I was drinking 8 crystal light energy drinks just to get through a 10 hour work day and in bed every second that I wasn’t at work. I was putting everything I had into just making it through a work day and still so sick I would have arguments going on in my head telling myself “I can't make it and I have to go home, I just can't do it” and then trying to override that with more thoughts saying “I’ve got this There's only four more hours, four more, that's not that bad, I've already worked six hours, I’m over half way, I can do this” It was a constant argument sitting there in agonizing pain where I would literally get the stress sweats because I was in so much pain that my deodorant would quit working. I remember being so scared I would fall asleep at my desk I would have nightmares about falling asleep at my desk. On breaks I was just so tired that I couldn't even handle going to the break room to eat. I just didn't have the energy to socialize so I would hide out on my breaks away from people yet at the same time I was afraid I would fall asleep on these breaks, even eating.

Eventually I started losing the ability to walk and my walking got so bad I couldn't make it to the break room and back in the allotted time for lunch let alone microwave my food and eat so ended up just eating at my desk, too weak to move and falling even just in the five feet to the printer. Things got really scary before I was pulled out. They had to call the squad on me more and more often whether it be passing out or having a seizure, I was going downhill and going downhill fast. I remember one time They called the squad on me because of my heart issues. I came back two days later and someone blew that place up with rumors that I had died. I had so many people walking up to me shocked saying that someone or another told them I died. I eventually found who started the rumor and honestly wasn’t very happy about it and his need for attention over my expense, especially when I had been so sick for so long I was literally scared every day that I really would die. Even when my doctor told me I can't go back I refused to leave my job.

He literally had to sit down and say look, “I know this is a pretty visual but let's say you and a co worker go to the trash compactor to throw away some boxes and while your both throwing them away, you fall into them, knocking them into the trash compactor and they are crushed and die. I would have no choice but to testify against you in court, telling them that I told you that you were no longer fit to work and you went against my advice. You could go to jail for murder” I told him I do a desk job anyway so he could just put me on restrictions and tell them I’m not allowed to throw away any trash. He told me it didn't matter because at the rate I am passing out, I’m a legal risk to a job. I could hit my head on a desk or anything. I was so sick at the time the whole right side of my face was drooping like I had a stroke on top of everything else but he flat out said, I’m not going back to this job or any job.

When I was first disabled this is when I realized how sick I was. He and my neurologist did a bunch of tests and found out by pushing myself WAY harder than my body could handle I had put myself into pure autonomic nervous system failure, congestive heart failure and kidney failure. I just ignored and neglected what my body was telling me so badly that it just started shutting down. Upon leaving I was sleeping 20 plus hours a day for almost a year. I am no longer suffering from congestive heart failure and kidney failure anymore but I have to be very careful and learn what my limits are. I hate having limits, I hate to stop but I now understand the importance of self care and listening to my body. I understand just how vital and important this can be for someone with a chronic illness.

#MyEDSChallenge #MyHSDChallenge

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 25 Prompt: Share you're Invisible)

Ehlers Danlos Syndrome is an invisible illness which means you may look totally healthy and as if you have nothing wrong with you on the outside yet internally you are very ill. These are the people you could pass on the streets any given day and not think twice that they are sick, the ones you may see park in a handicap spot at the grocery store and get out of their care, walking into the store making you question if they really need that spot even if they are very sick and very much in need of this space. That being said, being a paraplegic and not able to walk at all, I have crossed the like from an invisible illness to a visible illness unless I were to transfer onto a chair and do a video conference in a chair instead of my wheelchair but there are a lot of components of my illness that are still invisible such as the pain, fatigue, nausea etc. Below are some pictures that can really feel a connection to. They are not mine but they visually show how I feel on the inside.

#MyEDSChallenge #MyHSDChallenge

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 24 Prompt: Future Goals)

My ultimate goal is similar to my wish. To get someone in the federal government to listen, some kind of help with my two most short term goals being the approval of genetic testing, the approval of a proper MRI of my brain and spine which involves someone who can do one with my pacemaker and actually has the parts and pieces to do the Flexion/extension properly or even better the approval of an upright MRI. No one wants to touch me because of my pacemaker. I need this MRI to reach my ultimate goal of having one of the brain surgeons who often operate on EDS patients and are competent at doing so covered by insurance so they can repair my back. How I’m going to achieve these goals, I don't know. I have been trying for four years now with no luck. I have sent out so many letters, plenty of scientific journals backing the genetic testing, upright MRI and brain and spine manifestations and need for an EDS knowledgeable surgeon but so far can’t get anyone to listen and help me make this happen.

#MyEDSChallenge #MyHSDChallenge

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 23 Prompt: Your wish for EDS/HSD

My wish for EDS has actually changed a lot since the pandemic. I never wished for a cure before as I didn't see that ever happening with EDS being a genetic condition. I have always wished that there would be more awareness which spread to a federal level which would result in a significant reform in Medicare.

I have sent god knows how many letters to government representatives over the past years. The only one to respond was the receptionist for Ohio Governor Mike Dewine. I sent him a letter explaining how Medicare and Mycare Ohio insurance programs are a death sentence for a lot of patients with EDS, how I have had over 40 medications denied or simply not on the formulary, denied IVIG, Genetic Testing, an Upright MRI, Rotational CT Scan, a consult with an EDS knowledgeable brain and spine surgeon resulting in the denial of a brain and spine surgery that could eventually kill me. I told him there are many more of us who are potentially terminal, not because there's nothing that can be done to save us but because the things we need aren’t in the formulary.

I explained how there are multiple special needs plans but the only ones with an option of a PPO plan are the ones for people who were institutionalized. I told him how OSU wanted to put me into a long term care facility but were unsuccessful because no facilities can accommodate a gluten free diet so I was sent home on home health care so don't qualify as institutionalized even though home care and nursing home care are both pretty much equal as to what can be done. I explained that rare disease patients often need to seek out of state care because there are such few doctors who are knowledgeable about it, stating that there are no neurosurgeons even in Ohio trained to operate on EDS patients with brain and spine manifestations. I requested that he meet with myself, my doctor who is an EDS specialist and sees almost all EDS patients, possibly some of his other staff and some of his other potentially terminal (could easily die without the needed care they have been denied)

Upon writing him I received a call from from his receptionist who said “Unfortunately, Medicare isn’t perfect. It lets some people fall through the cracks. It seems as if you are one of those people. I regret to inform you but the governor has turned down a meeting with you.” My wish is that someone would listen. Someone will reform the system to make it work for people with rare diseases or possibly create another special needs plan for people who do have rare diseases so like those who are institutionalized we can receive a PPO.

A plan needs to be created that allows for us to get things covered that we need. Where instead of filing a grievance because something was denied and then going through all of the phases of the appeal process only to still be told “What's written in the formulary goes, still denied, regardless of the need I wish that this plan would assign us a personal advocate who will work with us and our doctor so the need can be heard rather it means a conference call with our doctor, us having a chance to submit links to medical journals describing the need or whatever they need so that they can review it and actually be more flexible, making approval decisions based on our medical conditions rather than simply a formulary in which most rare diseases aren't even listed on. I wish for a system where our medical needs are met.

With the introduction of MRNA vaccines I hope for more awareness of rare diseases so that there is a chance for a treatment or cure of not just EDS but many other rare diseases. I’m not trying to say cancer doesn't deserve science or a cure but we are raised to believe that cancer is the worst thing that can ever happen to a person. Sure some cancers are really really bad, I won't deny this but a lot of them are also just a bump in the road. Almost all money donated goes to some kind of cancer related fund or study and the majority of it goes to one form of cancer leaving the others in the dust so I wish that people would learn that there are conditions that exist that are just as bad, if not worse than cancer and that either a cure for cancer as a whole was developed or they would take the cancers or conditions with a really good survival rate, say 90% or higher and then take so much of that funding and dedicate it to rarer diseases or rarer cancers without as good of a survival rates because even lets say, breast cancer kept 20 percent of its funding, they would take the other 80 percent and give 20 percent to pancreatic pancreatic cancer, 20% to lung cancer and 20% to adrenal cancer so that they have a chance to increase their survival rates as well. They are cancer too so in doing this they would still have a chance at finding new treatments that work for breast cancer as well as these cancers so it wouldn't be like totally giving up on cancer but would allow people with rarer forms of cancer to get a chance at life.

Take this concept and expand it to all rare diseases so more people with EDS, Osteogenesis Imperfecta, Trisomy 13 and so on have at least a chance. So many conditions that have multiple treatment options , some you can choose between 10 or 15 treatment options but most rare diseases don't even have one so that's all I’m asking is for a chance for something that can provide relief for those with rare diseases like those with common diseases take for granted. I wish for changes to Medicare and healthcare reform as a whole and change to mindset, especially when it comes to donations and charities and it all starts with increasing awareness.

#MyEDSChallenge #MyHSDChallenge

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 22 Prompt: Proudest Moment)

Choosing a proudest moment is actually kind of tricky. Four come to mind so I will discuss those. The first one was when I was 13 and I don't even know that I would call it proud because I didn't talk about it for a long time. I honestly think this one is more of being in the right place at the right time and just doing the right thing but I will discuss this regardless as its something not too many know about me or a story I talk about often.

I was working in Little Kids Space at the time. There was a little girl playing. I forget her age now but she was under the age of two. I want to say maybe I am 18 or 19 months old. The kids can't get out of the kids space so even though we encourage the parents to play with their kids and interact with them some will sit down and read while their kids play and not pay the best attention to them. They used to take track of how many kids a parent brought in too so they didn't come out with more than they went in with (kidnapping) Well the little girl's mom was in the bathroom so she wasn't watching her daughter. They do an amazing job with safety having special plugins that power won't go to unless the two or three prongs of a plug go into the socket at the same time so fingers in the outlets won't get electrocuted, adding bumpers to things etc.

Of course things happen and someone put a bean bag in front of the window and she got on the beanbag I think and climbed up onto the window seal. There was a little edge of an exhibit which held the control panel but a lot used it like a bench and it faced the window. In training we are told not to pick up a child no matter what. Well I was picking up balls at the ball pit and turned around and saw her in the window. A lady was beside her with another kid who I thought was her parents. I sat the ball grabber down and went over to ask her nicely to get down out of the window because it was dangerous. Right then the woman walked off with the other kid so I realized she was alone and started jogging over to the window. Another kid ran in front of me and dropped a toy coming to a dead stop to pick it up so I had to stop so I did not run over him. I glanced down at him to go to step around him and I heard “WACK” then this agonizing and almost screaming cry. The kind of crying where you know a kid is really hurt and not throwing a temper tantrum or needing a diaper change. High pitch screaming you can't really make a mistake. The little girl fell out of the window seal and hit her head on the bench and blood was gushing from her head so fast you could literally see it gushing more forcefully as her heart beat.

I took off running over to her and her mom came running out of the bathroom right behind me. Her mom was a total mess, not even sure what to do and too panicked to really do anything. I grabbed her up in my arms and pressed my hand against her head, ran into the bathroom and grabbed a ton of paper towels. Her moms just totally having a melt down and Ted who worked at the front gate and was an adult full time employee heard her screaming and came around the corner so I yelled for him to call 911 and he did. Her head was cracked open from the top of her head and slightly to the left side basically as far back on the top of her head as her ear, all the way down to her eyebrow so it was a good six inch slice and massive. I got her on the floor and yelled for a guest to pound on a door which was the employee door and tell them to bring out some T shirts, and ace wrap as fast as they could.

We had gauze and I didn't even know if the ace wrap would do anything but I did know that we had a ton of white t-shirts and grey sweatpants we will let kids borrow if they play in the water area and get their clothes wet. We will let them borrow clothes and will throw theirs in the dryer for them but we would wash all of our clothes in bleach after they were borrowed. We had some gauze, Band-Aids, ace wrap etc. that we kept in the play hospital for kids to play with but gauze weren’t going to do anything for this big of an injury so the bleached shirts were the first thing that came to mind. My co-worker came running out with a handful of t-shirts and ace wrap and of course she was paid staff too but was squeamish and about passed out so I grabbed the shirts and folded them putting them on her head and ended up not using the ace wrap but used a several of the T-shirts wadded up on her head and wrapped one as tight as I could around her head to hold the others tighter on her head and used one to try to wipe the blood from around her eyes, nose and mouth that had ran down her face put her between my legs and just pressed on her head as hard as I could to try to keep it closed until the squad came and tried to calm both the baby and the mom down as both were bawling. The paramedics came and took over, taking her to the hospital. After they left someone went downstairs and got me a new shirt and I got cleaned up while they cleaned up and coned off the whole area for housekeeping to clean up. I apologize for picking her up since we aren't supposed to do that and they said I did the right thing.

I came in to volunteer again a week later and everything was pretty normal. I came in the following week, two weeks after it happened and when I walked into the office they had a big cake and when I came in yelled congratulations, my boss came up and awarded me the gold star for going above and beyond the call of duty and told me my name will permanently be engraved on their wall. I had no clue what was going on and they read a letter to me that the paramedics had sent to them to give me saying that if it weren't for my prompt and professional action, based on her small size and the massive size of the would she would have never made it to the hospital if it weren’t for me and that they credited me fully for saving the little girl's life. A few weeks later I came to work and Ted told me that the mom came in with her daughter on a day I wasn't there and asked for me but since I wasn't there she wanted them to tell me thank you and how much it meant to her what I did and brought her daughter so I could see how she was doing but they said she was doing really well, happy, had a really big scar but other than that she was back to playing and being herself.

The second event also at COSI involved a project I was doing to better the building. They let me walk around the building for part of the day over two weeks, blind folded… well kind of; we spray painted a pair of goggles black. I used with a PVC tube to mimic a cane that someone uses that is blind to try to get an idea of what there isn't accessible to the blind community I came up with a huge list of ideas but of course, I’m not blind, well at least not with my glasses so I asked them to bring in a class of kids from the school for the blind and gave them a tour of the building. While there I took note of anything they thought wasn’t accessible to them. I also went home and researched technology and things being implemented at other places for the Blind.

They gave us a limit as to how much they would spend on our project and it's not a lot but I tried to pick several things I saw were the most needed. I narrowed down the list and had them purchase Six Audio Description Devices for their Extreme Screen Theater. I then decided we needed both a braille map of COSI and to label each area with braille signs. I wanted to do either braille or audio descriptive devices for all of the exhibits but that wouldn't fit into the money allotted for the project so we had to go cheap with little stick on braille signs for things like the bathroom, stairs, exhibition entrances, stairs, elevator etc. I had a little bit left and you know, good to the last drop. In Little Kids Space they had Rat Basketball but children who were blind couldn't really enjoy a bunch of rats running around an empty fish tank and throwing a ball in a hoop. You couldn't touch them or anything, just heard a bunch of kids yelling and rooting for their favorite mouse and the sound of the little orange ping pong ball with holes in it hitting the floor of the fish tank when the mice put it in the hoop so I wanted something they could enjoy.

At the time Kids Space was only open for kids in kindergarten or younger so I had to make it something fairly basic for a kid to understand so I made a science of touch box and tried to make it like a game where two kids compete against each other like rat basketball was a game where they had to put their hands in the box and guess what the item was before they pulled it out. The same exhibit also had another set of boxes that were interchangeable where you could reach in and try to pull out two things that felt similar like a mini basketball which has the little bumps on it and a fake orange which felt very similar with the little raised bumps. I added some fun things to feel in there like snake skin, rabbit fur and slime. It was pretty basic and cheap but I felt that they needed at least one show for little kids space that a child who is blind can participate in.

When I was done I turned in a extensive list of things like the braille exhibit signs or audio description signs. During my research, I found out there was an airport that wanted to make it easier for the blind to navigate and installed a steel bar in the floor that was kind of like a little lip a cane can fit into. The person who is blind can place their cane in it and it will keep them walking on a straight path down the hall with little notches to indicate where there were halls or doors for other rooms so they knew where to turn but I loved the idea of that combined with the braille, 3D map. In adventure I wanted their letters for their secret language to have like a clear puff paint put on them to make them tactile friendly and a bunch of other ideas.

After I completed the project they brought the school for the blind back to both try the changes I made. With only six audio description devices they had to share and I hoped for them to get more later but they just used ear buds to share them and six was better than none. I also reviewed my list of ideas with them but what makes me proud is that they continued to utilize the list even long after I left and I have seen a lot of the more expensive things added like the braille and audio description on a lot of the signs at the exhibits. That metal guide rail was installed, before I even left someone created a 3D, braille map. But it makes me proud that they took my ideas and continued to implement them even years after I had left.

The third moment was about a year after my grandma died. It was close to Christmas. My mom and I were a little depressed because we used to always like buying gifts for my great grandma and this was going to be our first Christmas without her and honestly even more depressing because she passed away 2 days after Christmas. We went grocery shopping at Kroger and were picking up some things at the pharmacy when we heard two little old ladies talking in the isle beside the one we were in… I guess you can say where were eavesdropping but one of the women was talking about how bad she needed a walker and they were both saying how they did not have the money for one, how bad the one needed it and debating what to do and how to save up for it to make it affordable. One kept saying how she wished she could afford it and would help the other out if she could and talking about how low their social security is and how sad it is to work all your life and to get such low checks.

My mom and I went another isle over and were talking and it's funny because we both had the same idea. My mom asked if I would think she was crazy if she bought it for them and I was like “What? I was about to ask you if it was okay if I bought it for her. I feel bad she needs a walker and can't get it. We somewhat argued about it for a minute the whole, I'll pay for it, no I'll pay for it, no me, no me kind of thing lol but eventually we decided to split the cost if the woman would take it. These two women were total strangers to us but we always got Grandma gifts and had just been talking about how depressing it was not to get her something this year so we almost felt like it was meant to be, like grandma would have wanted us to help another grandma, like adopt a grandma for Christmas so that's what we did.

We went and talked to them, found out they were sister in laws and the younger one was 98 years old and the older one who needed the walker was 104 years old. At first she told us no that she didn't want us to buy her a walker but how nice it was for us to offer but after explaining that my moms grandma, my great grandma had passed away almost a year ago and this is our first Christmas without her, the first time not getting her a gift etc. and how we wanted to do it because it would help us too because it would help to get a gift for a grandma even if it's not our grandma so she agreed to let us get one. They kept them behind the pharmacy counter but they had pictures and things to look at. She was looking at them. There I think were three different ones, two that were just regular old grey walkers and one cherry apple red rollator with a seat on it and a basket where you can store stuff. We noticed every time she looked at it her eyes lit up but she kept pointing to the least expensive one and saying she wanted that one.

We kept asking if she was sure she didn't want the rollator telling her our grandma had one, since its on wheels you don't have to pick it up when you walk, we told her if she's at the store like she is now and gets tired it has a padded seat she can sit on and take a little break, we told her about the basket and how if she didn’t want to carry her purse she could push it around in the basket and how grandma gave up a purse all together and would just put her wallet in there, her medicine, blood pressure machine and all kinds of stuff and if she went shopping with us she would just stack the shirts or pants she wanted right on the seat and could push it around, that its not very heavy and easy to get in and out of the car and such. She kept saying no and the lowest price one was good enough for her but when we were describing it she was just looking at the picture smiling away so we said okay and we would get her the least expensive one and told them they could take a seat while we paid for it, went up to the pharmacy counter.

They Pharmacy technician asked if they could help us and we were like “Yeah, can we get the red rollator with the seat lol. We paid for it and came back and showed her and she started crying saying in all her 104 years she has never had anyone do something like this for her, how beautiful it was, how red is her color and we didn't have to get her that one because she knows it's more expensive we told her we could tell she really liked it though and she finally admitted she did like it the best but knew she didn't really need all of the bells and whistles, we told her she would use them and we really thought this would would help her a lot more because we know our grandma, even at home you would see her in the kitchen cooking and sitting on her little rollator seat while she waited for her pot to boil or while she had food in the microwave and we really thought she would use those bells and whistles.

She ended up asking for our address so she could write to us every now and then so we kind of did get two grandmas that day in her and her sister in law. On the way out we noticed they checked out right before us and were loading their car. They laughed thinking it was funny they ran into us again so we put their groceries in the car for them and opened the rollator, put it together for them and showed her sister in law how light it was, how to open and close it and how to get it in the car. We got letters from them every year around Christmas after that for about four years, then they quit coming so I’m assuming they lived to be 102 and 108 or possibly the one lived to be 108 and the other quit writing but you never know.

The fourth which is rather short since I already explained a lot about this situation in past posts but I used to work at a long term care facility for children with severe to profound physical and intellectual disabilities. They broke so many codes and there was a lot of neglect that took place there from the staff. I ended up quitting because it got so bad but I grew really attached to those kids while I was there. They quickly become like your own children so when I left I contacted the Department of Developmental Delays, Children's Services, the Medical Board and Department of Health and Human Services to report them, one in particular said they would make an anonymous visit and next thing I knew I got a call from the place I worked telling me how much trouble I got them in and telling me I was banned from their facility and never to come back.

Why does this make me proud? I feel like I did the right thing. These kids deserved a lot better care than they were providing them, especially the ones who had parents in other states who rarely visited or the ones who were ward to the state. I would like to hope that what I did changed things for the better and gave those kids the care and attention they deserve.

#MyEDSChallenge #MyHSDChallenge

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 21 Prompt: Wear #REDS4VEDS

Vascular Ehlers Danlos Syndrome is the most severe form of EDS. Its also the form believed to run in my family. The average life expectancy for this type is only 48 years To celebrate, I am wearing red today for my uncle who got exactly 48 years before losing his life suddenly, my mom who has had an organ rupture that almost took her life in 2019, myself and anyone else who is in this battle or lost their battle to this terrible disease.

#MyEDSChallenge #MyHSDChallenge

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 20 Prompt: Behind-The-Scenes)

I’m going to be honest here. I have no idea what this prompt is asking me to answer but I’ll give it a shot by explaining things I don't show outwardly. A lot of people see me thinking I look healthy or good or not in pain or what not but the truth is that I have been in pain all my life. It's literally exhausting and the main reason I also suffer from depression. I truly believe depression wouldn't be an issue for me at all if pain and fatigue didn't come into play. With always being tired and always being in pain you get really good at faking it and looking fine. Heck you get really good at what I call “Faking it for a day.” This is when, let's say you have one of those once every six months or once a year special occasions like a friend's wedding or a family outing to the fair or the zoo. Of course it takes a lot of planning but you get to where you can pull yourself together so you appear to be a lot healthier than you are.

Let's say I’m going to the zoo with my family in June. The day before we go I will call my infusion nurse and have him come over and give me a 2 liter infusion. Other than that I will spend most of the day sleeping and resting, making sure to plug in my smart drive power assist and watch the night before and take the watch charger with me when we go to charge during lunch. That next morning that's when I will get a bookbag and really utilize bracing to get me through the day. I don't use my braces as much as I probably should due to how badly I sweat and overheat but I will usually take my back brace and my neck brace at the very minimum, I may take my leg braces if its cooler that day and wear them so that if there is an animal exhibit I cannot see well over the rail I can lock my braces to stand and see things better.

If It’s hot, I will usually avoid standing at all costs to prevent passing out. I will pack multiple ice packs as well as several frozen bottles of Gatorade and one bottle that is either just refrigerated or that I refrigerated and just stuck in the freezer when I got up that morning so it had time to get partially frozen. I use these ice packs throughout the day, rotating them on the back or seat of my chair to keep myself from overheating. Due to my autonomic dysfunction if I am out too long in the summer I will run a fever so need to prevent this. I will put sunscreen on to prevent my melasma from my Addison's Disease from getting worse and if I wake up and realize I really look like crap I may put on some makeup. I have learned to apply makeup in a way to cover the circles around my eyes, make my Myasthenia Gravis face droop look less noticeable if I’m having a bad day with that etc. I take my medications including my Adderall and will pack Salonpas patches in my bag.

I know I will likely have to use the bathroom so of course with the little respect people have for the handicap bathrooms, I will pack some gloves and sanitizing wipes to clean the toilets before I sit on them. When you can’t use your legs squatting isn't an option and if you're lucky enough to go somewhere with paper seat covers, they are usually too high to reach and don't really work anyway since I can't lift my full body up to sit on a toilet and I basically slide onto it leaving those things to just slide into the toilet or off the other side so I have to be prepared even for something as simple as going to the bathroom. I will usually bring an extra pair of clothes because of my hyperhidrosis. I know this is a little more than you care to know, but sitting in a wheelchair all day, in the heat results in the butt sweats so much so, sometimes it literally feels like I peed my pants. My back also tends to sweat where the backrest touches it. I try to put the ice packs in those areas since they get the hottest but they aren’t very big and eventually melt so it helps to have an extra dry pair of clothes.

Then comes my service dog. I pull some frozen water bottles out of the freezer for her as well as some cold ones, pack up her cooling jacket and boots, get her some food or snacks as well since it will be a long day in the heat and she's a small dong so I don't want her sugar to drop. I will usually roll up a blanket in the bag so if we need to take any longer breaks she can have something soft to lie on and if I haven't been to this zoo before I will look online, planning ahead as to where I can go that may have air conditioning and where I may be able to go if the pain intensifies to the point where I have to take breaks to lie down like at the aquarium or if they have bleachers for shows I will check the times when they won't have any shows going on I can lie down on the first bleacher between shows, a bench that is kind of hidden or what not.

As you can see, it takes a lot of planning and braking. I have to set alarms on my phone to make sure I don't miss meds and need higher calorie and higher protein food to eat with them. Higher protein foods stick with me a lot longer so good for these days. When we get home from the zoo, I usually spend the next 5+ days in the house totally out of commission, in pain, sleeping a lot and paying for what I did but sometimes it's worth it to get a little normality in my life.

#MyEDSChallenge #MyHSDChallenge

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 18 Prompt: Words to Parents)

I am interpreting this prompt in two different ways so will address it as such starting with explaining how my parents are with my condition and then words to parents of kids newly diagnosed or who present with a wide array of symptoms.

My parents were awesome prior to my diagnosis. There were things I wish they had known and even now wish they knew but I almost always had that support system some don't have. Sure there were a lot of times I would tell my mom I was having chest pain or my heart was pounding where she would say “It's probably just anxiety” and of course when anyone has a headache, runny nose, stuffy nose, scratchy throat or generally coming down with some kind of bug her notorious saying was “It’s probably just your sinuses” which me and my dad still talk about to this day. She went decades of her life taking Sudafed every morning truly believing she just had bad sinuses to find out years later she was actually having an allergic reaction the entire time due to Systemic Mastocitosis and really needed allergy meds and since she had bad sinus issues she seemed to think anything and almost everything that someone was experiencing from the lungs lungs up, weather it be a migraine, eye pain, sore throat, coughing, going horse, runny nose, bloody nose etc. it was just your sinuses which usually wasn't the case because soon after I would test positive for strep throat, oh the times I had strep throat. I had it so often that when I got it, I started not even noticing the throat pain believing my mom that it was my sinuses but more major like a sinus infection, to go to the doctor and find I had strep again and was desensitized to the pain. Sometimes my whole throat and mouth would be covered in blisters before the pain was bad enough just because I always had strep. Occasionally it was other things like my migraines growing up I now know were from Occipital neuralgia, craniocervical and atlantoaxial instability. So she didn't always take me seriously but I have to admit, after two decades of your life being told you're a hypochondriac and your symptoms are all in your head, I started to believe I was crazy myself and that my symptoms either weren't real or much less severe than they really were.

My dad being autistic never really dealt with my health stuff very much. He just isn't knowledgeable in it and has no clue what to do so my mom was the one who did that. Though she pawned off a lot of my more serious issues on it all being on my head she was always there for me. She took me to the hospital if it was needed and knew I didn't say I needed to go to the hospital unless I really felt like death. There have been several times where doctors have tried to say nothing is wrong and send me home where she has literally refused to take me home or argued with doctors but this was mostly after my diagnosis. I kind of wish she would have done this and pushed harder when I was a kid as she very much has, I guess you would call it brand loyalty but it went further than only grocery shopping at Meijer, literally fighting with me for years about leaving Verizon because in her mind Verizon was the only company that was any good, only allowing one person to cut her hair even if it meant following her to a new job, she had a doctor she liked and stayed with him for most of my life and denied he wasn't a good doctor after an incident in high school which caused me to switch. It's hard for her to move on even if there is no progress or things start to get worse so one thing I wish is she would have done a little more doctor shopping when I was a kid.

Doctor shopping is oftentimes frowned upon at and when most people hear of doctor shopping they tend to think of it as someone who goes from doctor to doctor looking for drugs or or to sign disability papers so they can get a free ride at life but when you have a rare disease doctor shopping means something totally different and can even be so vitally important your life and future depends on it. I had so many doctors who simply invalidated my symptoms saying I was making them up for attention or had a mental illness. Many of these doctors did nothing at all but the majority of them did the exact same tests over and over. If it was a doctor outside of the hospital they did a CBC, Chem. and a 7 (Basic Metabolic Panel) which always came back normal or borderline normal therefore they deemed me healthy, slapped a psychiatric disorder on me or simply said there's nothing wrong and sent me on my way,

If I went to the hospital, they would do the CBC, Chem. 7, accuse me of doing drugs or being pregnant or when I was really little bring in case managers making accusations of child abuse that wasn't happening, then do a drug test, pregnancy test and STD testing, say the CBC and Chem. 7 were normal or near normal, congratulate me on not being pregnant, having any illegal substances in my system or STD’s, slap a psychiatric disorder on me saying they tested everything and sent me home. When I got older, lucky me, I got two drug tests, the urinalysis drug test and when it came back normal, they would come in and draw my blood assuming if I was having seizures, passing out or having heart palpitations I must be on drugs and tampered with the urine test. I wish prior to my diagnosis my dad would have had a computer and learned to use it and both my parents would have done more research. I also wish they had advocated for me better and if one doctor said they didn't know or didn't believe me, they would have moved on to another doctor because if I could have gotten diagnosed sponsor it would have saved me some permanent damage to my body that I have now and possibly spared me some of the medical abuse and neglect though even with a diagnosis you can't avoid it, especially when it comes to the hospital.

Doctors and nurses are just as lazy as everyone else. It's just like every other job where 5% of the employees do 90% of the work and 90% of the employees do 5% of the work. The ones who actually take their jobs seriously are used to the max by their coworkers and like me when I was a nurse, didn’t believe the patients deserved to suffer or pay for their staffs laziness and neglect and those are the ones who try to play superman taking on their patients and everyone else's, answering call lights that aren't theirs, bringing food to others patients, making sure they are turned or their catheters have been emptied and generally running around like a chicken with their head cut off and I can always tell who falls into the 90% who uses the 5%, carrying less about the patient as long as they get a paycheck and the 5% who look like they are about to fall over yet still giving what they don't have to make sure the patient doesn't pay for their lazy staff member.

It's very easy to tell when you have spent a large portion of your life in doctors offices and hospitals and learn how rare it is to get one of the people in the 5% as your medical personnel and watching the lazy staff you have out your door at the nurses station sitting with other lazy staff in front a computer laughing at a YouTube video their watching, gossiping and talking badly about another patient loud enough for you to hear, playing pranks on each other, one nurse who drops her pants moons another in a room of 9-11 year old little boys, The nurse who has the pediatric patient who flat lines, on bad days, it's not uncommon for this to happen 20 times in one day and at their best, at the very least multiple times a week. The patient's vitals are linked to a pager the nurse carries so if the patient's heart stops the pager will alert them yet they consistently leave the pager in the patient's bed, on their night stand, at one of the computer kiosks where nurses chart, in another patients room, in the activity room or god knows where. I've found it in the bathroom on the toilet paper mount, in the linen closet on top of some towels, you name it then this same nurse who is buddy buddy with the nurse slips away with a coworker to the activity room or to the nurses lounge for you to later walk in on them playing cards and talking bad about patients or other staff. The two nurses going through a wedding magazine, looking at dresses and hear one say “That's my room”, and the other one say “Just ignore it and let Janett get it” Yes these are true stories down to the name used for the poor nurse who was running around like a chicken with her head cut off. All experiences I have seen either in the roll of the nurse and in the roll of the patient.

I was mostly around nurses and of course you don't see doctors very often but being in a chair I have been forced to use a bedpan before and seen examples similar to this with doctors as well. Once I was taken downstairs for a cardiac ultrasound, asking to go to the bathroom before they took me down because I had my call light on to go before transport even came in my room. They told me I would only be down there 10 or 15 minutes and asked me if I could wait. They took me down there to beds of people lining the halls and I had 18 people in front of me. Well, 15 minutes turned into 4 hours. I asked multiple times to go to the bathroom and they said they don't have a wheelchair down there and if I can't walk to the bathroom I have to hold it. I even asked if they could call up to my room and have my mom bring my chair down and as gross as it sounds, I even got desperate, breaking into a sweat I had to pee so bad and asked them to wheel my bed outside the bathroom and lower it as low as it goes, and I would put my blanket and pillows on the floor and slide out of my bed onto the floor myself and they can pull me on the blanket to the toilet or I could army crawl and use my arms to pull myself up onto the toilet. They still said no. I asked earlier on if they could take me back to my room or bring a wheelchair, still no.

Eventually I told one of the nurses that I had to pee for 3.5 hours, she saw that I was all sweaty and shaking. I said if they don’t get me somewhere to pee within the next few minutes they were going to have a huge mess to clean up. She grabbed two bedpans, a small one and a bit one, said you're tiny and I told her no, use the big one, I have EDS so my bladder can stretch really far and I can easily pee 22 oz. so she rolled me into a doctor's personal office, he was in there watching a movie on Netflix on his computer, yes a full blown Netflix movie. He tried to flip the screen back to an ultrasound image really quick when the nurse stormed in with me to make it look like that's what he was doing but he fumbled around a little bit and wasn't fast enough. The nurse told him to get out so he left and I had to pee in a bed pan in his office… then spent the next few weeks having to wear diapers for bladder leaks because they let me hold my bladder so long my bladder stretched out too much from hypermobility and it folded on top of itself resulting in bladder leaks until it shrink back down. Thank you OSU. Doctors can also be extremely lazy and I wish this was something my parents acknowledged more or took more notice of and fought more for me, looked more into my rights, such as being able to call a patient advocate or fire doctors and nurses which is something I had to find out myself.

I found out I had EDS before I was even diagnosed which is what made me fight so hard to find a doctor who has heard of it. I got desperate being sick and spent years learning how to find and read medical journals. When Facebook started having groups I started joining groups to ask questions, I started going to doctors and no longer letting them call the shots. If they said they wanted to do a Chem. 7 and CBC I would say that's fine if they want to but it will come back normal and start requesting tests that aren't considered standard and that are used to test for specific conditions rather than just evaluating me for acute conditions. I started walking in and telling doctors how I felt and when they either said well we will see you in a year to see if things change or wanting to run just the basic CBC and Chem. 7 I would start saying “Could you run a 24 hour Tryptase Urinalysis”, “Could you run a gastric emptying study”, “could you run a 24 hour urine for Cortisol levels”, “could you run an ELISA”, “would you write for a flexion/extension MRI with contrast”, “What about a rotational CT” “Everyone wants to do a colonoscopy but instead of ordering that can you order an Endoscopy this time?” “I would like to get an “ATCH Stem test”, “I know you have never heard of one but if I email you the information will you order a Tilt Table Test”, “You’re doing that Aortic Ultrasound without contrast? It’s supposed to be done with contrast. Could you call up to the doctor and ask him to add contrast before you start?”

Sure a lot of doctors would downright refuse. I have gone in 5 and 6 times asking for a test and being told no, only to go in the 7th time and be told “It will come back negative but if I order this will you quit bugging me about it?” for them to order it and the test to come back positive for the condition I wanted it ordered for then they treat me like total crap to the point the office staff is mentioning about how bad he is treating me to find out he’s doing it on purpose to try to get rid of me as a patient, probably because he realized what he said was really wrong and he made himself look bad. I have learned that if a doctor isn't willing to listen to move on and find someone who will. You need to find one who is willing to run the test or even just ask if I can email them some medical journals or information about the test or showing the importance of it or why I believe it needs done, willing to learn and if I can prove my case they will order it no problem.

I wish I had someone who started this for me as a child who did the research or helped me do the research to know what tests to ask for and to find a new doctor for me if one was either trying to slap a psychiatric label on me or acted interested but simply refused to run any tests so my care went stagnant. I still wish my parents knew the ins and outs of EDS like I do and really researched it because it makes me a little nervous when a squad is called and they are stumbling over my diagnosis or saying “She has oh, that one heart thing that makes it go really fast. Oh what's it called or only naming like two of my conditions. It also scares me that one day I will be rushed in internally bleeding since things like Aortic Dissection, Carotid Dissection, Mesenteric Dissection, Iliac Dissection or Femoral Dissection as well as uterine and bowel rupture are common and can happen very suddenly in EDS that my parents may not know the common areas for bleeds or know them from most to least common so they may not know where to look or may not realize its actually internal bleeding at all until it's too late.

With all of the craniocervical manifestations I also fear I will be sent in for respiratory distress a or something else emergent relating to my craniocervical instability and my family family won’t realize its from the instability and if they do they wont know where to find information to prove this to a doctor or who the five surgeons in the US are who can operate on it so I will either end up on life support until someone gives up on finding the root of the problem which I knew all along what it was but couldn't tell anyone and pulls the plug, unable to tell anyone what is happening and advocate for myself, die before they even get a chance to hook me up to life support or end up under the knife of a surgeon who has absolutely no clue how to do the surgery I need and what modifications and special precautions need to be made for someone with EDS and I will die on the table like a few others I know or the last scenario, where I will have the surgery, wake up from it and it will be so botched that I’m one of the ones walking around with broken hardware, screws drilled into my spinal cord and paralyzed from the neck down, in more pain than I am now and the damage is too extensive to be repaired.

It's so important for the patient and their family to have very extensive knowledge of the condition since it's very complex and there are a lot of things that can go wrong at any given time. It's important to know what symptoms you are experiencing at any given time are associated with or at least the ability to know what medical emergencies are more common in EDS patients and the ability to narrow it down to 2 or 3 possibilities because most medical professionals don't learn about EDS or learn very little.

Just to put the complexity of the condition into perspective let's say you wanted to buy a book that taught you about diabetes and it was 500 pages long but you wanted to also buy a book on Ehlers Danlos Syndrome and be just as knowledgeable by the time you finish about EDS as you are when you finish the book on diabetes, there are about 15 common comorbidities of diabetes and about 250 common comorbidities of EDS. Diabetes can affect a handful of other organ systems however EDS effects every single part of the body so if you wanted to be just as knowledgeable about EDS as you would about Diabetes after reading a 500 page book about it and its comorbidities, given they were only allowed to give you more basic knowledge of comorbidities, say 10-15 pages per comorbidity, depending on its complexity and the rest on Diabetes you would have to read about 4,573 pages and that's only for hypermobile form of EDS which is broken down into trifecta so I gave 15 pages to each comorbidity of diabetes, were going to assume this book is on type 1 diabetes given there are 2 types of diabetes and 13+ types of EDS so after giving 15 pages to the comorbidities the remaining was for the condition itself. Since hypermobile is usually seen in the trifecta I had to multiple the remaining pages by three then add 15 pages for each comorbidity to get the total number of pages and even this is a very rough estimate since we need to consider how many organ systems are involved in each and how complex the comorbidity.

In most medical textbooks EDS is not listed at all or is only condensed into a few paragraphs at the very most while learning about collagen and connective tissue so if anyone in the medical field learns about it at all its very very little, so little that they can easily forget those one or two paragraphs they read our of the thousands of pages they read during medical school.

Now I know it sounds like I’m talking bad about my parents but that's not the case at all. My parents are incredible and so much better with my condition than a lot of others. They may not know the ins and outs of this but they know I am not faking anything, I’m not exaggerating, they know, especially with my PTSD, that if I go to the hospital I am pretty darn sick and know when to make me go if I continue refusing to go to the hospital. They don't want to talk about it or admit it so will often downplay the fact that death can happen very easily and at any time and I am not going to live an average life expectancy. They may avoid talking about it or downplay it but I know they know just how serious this is but they already lost their son and don't want to lose their daughter so avoid the topic.

They refused to let me be sent to a nursing home or long term care facility when we were told I could no longer live alone and brought me into their house. They help me with a lot of my needs. Heck, my mom has given me baths as an adult because I have been too sick to do so. My mom helped with training Maggie to be a service animal, making sure I made it to all of her classes, helping me teach tasks I struggled with due to being in a chair, using her commands so she gets practice and doesn’t forget what she has learned. My dad not so much. He's a softie that has let every animal we have ever owned, own him. If it were up to him to do the training, Maggie probably wouldn't even be house broken yet if I’m totally honest lol. They have taken on so much with me and though I appreciate it more than they could ever know I also feel terrible guilt surrounding all that they do.

They have to drive me everywhere. The safety of public transportation in America for people on Medicare is downright deplorable. Only one agency contracted by Medicare has seat belts for wheelchair users, most of the vans are from the 90s and not up to code. They are actually so old that someone who is disabled isn't even allowed to buy one for personal at the age the ones the state provides transportation in here in Ohio because they don't meet the safety requirements even for the minimum amount of insurance yet a cab company is allowed to purchase and insure them to transport the disabled in. Its one of those things where it's illegal for the members of the state but the rule doesn't apply to the government kind of things. Their extremely dangerous, I have been in ones in my 425 lb. wheelchair, with my112 lb. self my 17 lb. service dog in her one or two pounds of gear and a backpack on the back of my chair with my meds and maybe some food and a drink in it to take to a doctors appointment so maybe another 10 or so lbs. of weight, riding in a van and staring through the rust holes in the floor looking at t the rusty parts under the van and the pavement of the highway underneath me, hoping to god the floor doesn't give way to all of this weight so I don't fall through.

I've been in two accidents with drivers, most of these drivers smell of mamajuana when they come and one of them had a rink that had a little tiny canister on it (If I remember I’ll post a picture I secretly took of it” at a stop light he opened the little can, poured white powder into his hand, used his other finger to brush it into a pile in his palm and then snorted it up his nose. I have ridden in vans someone threw up all over, one that the door to the wheelchair lift had 3 of its 4 hinges rusted all the way through so when the driver opened the door he had to hold it with one hand because it was hanging on there sideways like a broken cabinet door with only the bottom hinge still attached, got me up the lift then shut the door, came inside and used a bungie, hooking it in a hole that it looked like was drilled into the door and then a natural hole where the raised roof of the van and the bottom of the van attaches in a hole that didn't have a bolt. It was a really windy day and on the way back, we were driving down my road, a gust of wind blew, the bungee snapped, almost hitting me in the face, the door flew open and the last hinge snapped with the door flying off and into the gutter along the side of the road. We were right down the road from my house and the driver casually said “I'll go ahead and drop you off first and grab that on my way back.” like that kind of thing happens every day or something.

I have had a driver ask to stop at a gas station and I told him that was fine thinking he needed gas. He pulled up beside the end pump and instead of getting gas we sat there for about 3 minutes when another guy in a red truck pulled up along the side of the building. The driver got out of the van and went around the side of the building where the truck was. All I could see was the back of the truck sticking, about a minute later my driver came out from behind the truck, sticking something in his front pocket, the truck left and then we left. I was hoping to god it was just his brother or roommate or someone giving him some money for lunch or something but for real, a wallet goes in the back pocket and what he had was smaller than a wallet since you couldn't see what was in his hand and most people carry plastic these days so I’m pretty sure I was just hoping it was lunch money out of wishful thinking because with along the side of the building out of view of most of the public and all it seemed pretty sketchy to me.

Anyhow my parents do a lot, they drive me to appointments when they can to try to keep me out of the appalling care of the state, they let me live with them, they provide a lot of care, cooking, doing my laundry, vacuuming and doing a lot of the things that I feel like I should be doing for them at their age. It really does make me feel extremely guilty and like a terrible person. They help with Maggie taking her out just to help me out even though I can usually take her out myself unless it's icy or snowy since she basically takes herself out lol. I can go in the yard with her in the late spring to early fall when it's warm and dry out so my power chair won't sink into the mud. They will pick up food at the store or meds for me they do a lot and with my mom having EDS too, I have seen my mom go down hill a lot since her botched surgery that left her on life support so I hate asking either of them to do anything or for help. My dad is almost 66 and my mom, though 8 years younger gets around worse than my dad does so it's really hard to need so much care and feel like I put it on them, especially when my home health aid was taken away when the pandemic started but of course most of the home health aids I had were so English incompetent's and fresh out of countries where they didn't have stoves or washers and dryers and what not, living in huts that they don't know how to use modern appliances or understand me when I relay my needs which actually made things oftentimes harder with a home health and than without one as my parents were always coming home to fixing messes the aids made too.

With all that being said, here is my advice to parents of kids with suspected EDS. Get them diagnosed as early on as possible. Do lots of research, I know it's a pain and may be a lot of work but the more you know about the condition the better. Don't stop there, learn your rights and laws around medical care and disability rights as well as techniques for advocating for your child. Get them on a 504 plan at their school so they can get the accommodations they need. Learning disabilities aren’t uncommon and the prevalence of high functioning autism is incredibly high in EDS patients so if you suspect they may have a learning disability fight for a diagnosis and have that added to the 504 plan. A 504 plan isn't just for learning disabilities, it can be for physical disabilities as well.

You don't want to caudle you child of course and many don't have a lot of severe symptoms as kids but make sure the plan accommodates for things such as food allergies, if they have POTS or low blood sugar make sure they have it in their plan to be able to bring their own food, be able to eat in class. I know on mine, I was allowed to use the teachers lounge microwave during lunch to heat food brought from home and they allowed me to use the bathroom in the nurse's office if I needed it. You can ask for things like that they not be punished for arriving to class after the bell within reason, especially if the school is large and they may have several classes on the opposite side of the building as their locker so they aren't forced to carry books for multiple classes or for them to have two sets of books, one that they keep at home and one that is in each classroom they attend class in so they aren't having to carry heavy books around or teased for having a backpack on wheels. This is one thing I would have really liked to have written into my IEP as a kid if I had been lucky enough to get diagnosed sooner. If they are more symptomatic, more prone to injury or have VEDS they may have more needs.

Again you don't want to be a helicopter parent and want them to do as much stuff for themselves as it is safe for them to do and want them to have all the experiences other children do but if gym is an issue you can request they don't participate in high contact sports or even have it put into their IEP that they can swap gym out for another elective like music, art or home economics class or in the lower grades where they may not have options for alternative electives you can ask if they have any teachers or aids available during that time frame who can create somewhat of a study hall for the younger child, helping them with their homework, studying for tests, able to sit there and let the child read a book to them and help them with any words they struggle with or even just play some educational games with them or let them play an educational game on the computer.

Some schools also offer physical therapy for kids, especially the ones with developmental delays who may not be mainstreamed and the therapy replaces gym for them. Even if your child has cognitive abilities cohesive with their age, you could see if they are allowed to join therapy with those children. With being able to do so much online now, I have heard of some requesting that on their bad days the teachers live stream them into their classroom so they can participate in class from home when needed or if the child needs a surgery or has a doctors appointment they can live stream in instead of going to school or live stream in part of the day before or after an appointment, going to school the other half of the time. You may also request extended time on homework like instead of turning it all in the next day, ask that they have the week, for example, they have to have all homework turned in from that week by the following Monday so say they are having a really bad day Wednesday and in a lot of pain or very fatigued and can only get their math homework done but not their English, science and history. They will be able to work on that homework throughout the week possibly adding the English to their Thursday homework, the science to their Friday homework and catch up on the history over the weekend so they at least aren’t failing or losing credit on homework if there are a few days a month where they are really struggling or not feeling well.

Another reason I suggest learning everything you can and really fighting for a diagnosis early is because if you work you are more likely to have a PPO insurance plan which covers a lot more than Medicare. You can get some things that Medicare won't cover out of the way in case the child has a possibility of being disabled as an adult. Genetic testing is one thing you really want to try to get done as a child as hospitals in some states like my own will not do genetic testing for EDS on adults unless they have another family member who has tested positive for one of the rarer forms of EDS.

You don't want to be in the situation I am where you have four doctors sure you have Vascular form and have been fighting to get you tested, your brother died before he had any testing, your uncle had an aortic aneurysm and died never getting diagnosed, you were referred to a geneticist who won't test you because you are under 21 and no one in you family has tested positive on genetic testing for VEDS, your mom is referred to genetic testing after coming out of a coma and being on life support after a major organ rupture that almost took her life and turned away for the same reason and your grandfather is referred and turned away leaving multiple members of the family suspected of having EDS but no one able to be tested because we are all over the age of 21 and I can’t have children nor would I want to because of the fear of passing this down to them there will not be anyone under the age of 21 to get tested in order for us to get tested so your stuck without a diagnosis. This is why you need at least a hypermobile diagnosis so you have time to fight for the genetic testing to ensure it isn’t a more serious type, especially if a doctor suspects it.

If your child has severe enough symptoms you can also get them listed as disabled under the state in order to get extra financial aid to cover medical needs not covered or special equipment like gait trainers or possibly a power chair for school and a manual chair at home It can cover the cost of tutoring and several other things insurance may not cover. If they grow up and work for so many years and end up getting worse, needing to go onto SSDI their SSDI it will also make it so that their payout will be higher if its on record that they were disabled before the age of 18.

Having a child with a complex health condition, especially when the condition is rare can be a lot of work and very stressful at times. Definitely learn everything you can and fight for a diagnosis for your child. If you suspect you may have the condition fight for a diagnosis for yourself as well. The sooner anyone starts treatment and can get regular screenings such as those for aortic dissection the more they can prevent damage early on and also prevent life threatening complications so that’s my advice to any parent out there.

#MyEDSChallenge #MyHSDChallenge

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 17 Prompt: Childhood)

This was discussed in many of my other posts but I will discuss it a little more here. Though I was born to the perfect parents for me I did not have a perfect childhood. I have a half brother and sister which played a roll in making things a little more difficult. Also being a child that was sick, spending decades seeking a diagnosis going through decades of medical abuse and neglect made life much different for me than most. Bullying had an impact on my life due to my delay in diagnosis. All of these combined sculped my childhood and made things a bit more complicated and a little less picket fence of a lifestyle.

I was born premature, requiring my first surgery at four days old and being diagnosed with a heart murmur. I had a brother who passed away before I was born and a half brother and half sister who were very irresponsible and wild to say the least. Between my health issues and my siblings I was forced to grow up very quickly. I went to custody hearings for my siblings who had a mother with multiple mental illnesses and would only take her meds when a court hearing was coming up and other times was an addict who was also Schizophrenic and Bipolar and would hallucinate about the swat showing up, telling my siblings to hide the drugs and so on. They preferred living with their mob because they had zero structure in her household but since their mom would take her medication before court hearings and have the kids lie, which they would because they liked not having to go to school, bathe or have any rules, my dad was unsuccessful at getting them from their mom.

They did however get mad on and off and demand to move in here, until they found out they had to go to school, do their homework and couldn't run the streets only to go back home. Every time they came they were riddled with lice, especially my sister and after allowing them to come into the house several times after my sister denied having lice and blamed it on dandruff or something which resulted in her spreading them to me since she shared my room when she was here, my mom had to start putting a chair out in the driveway and do lice treatments on them before they were allowed to enter the house so though my parents kept me clean I developed anxiety at quite a young age about lice which I still carry to this day. My brother was cleaner than my sister but he had ADHD and a very bad temper. I would watch him literally kick my mom in the face and try to beat her up as a kid. When I was four years old he was 12 and took me behind a pine tree in our back yard and beat me. This was the first time he went to juvenile detention.

His criminal record continued from there. It started with more minor things like petty theft but soon escalated to multiple counts of rape, cashing social securety checks of senior citizens and the list went on. He also became an addict using things such as meth and heroin. My sister resorted to a life of living off of the government and sugar daddies. She would go on welfare for 36 months and when they cut her off she learned quickly that if she got a job and worked for a month or two, just until the government started garnishing her wages, she would stop showing up, the job would fire her and she could sign up for welfare for another 36 months. She had kids but was never really mother material, letting them essentially raise themselves and still moving in and out of my parents house and coming for holidays saying she didn't have any money for gifts for the kids while amazon packages were rolling in with lingerie, promiscuous clothing and electronics for herself. During highschool I helped my mom raise her youngest which taught me a lot of responsibility but also another reason I grew up so quickly.

Now I’m going to back up and explain the health and social aspects of my life. After my first surgery at 4 days old it was pretty apparent to my mom that I wasn’t the perfectly healthy baby the hospital told her she had. Growing up I had chronic pain and was sick all the time. I caught pretty much everything going around and had strep more times than I care to think about. My mom brought my pain up to the doctor when I was 5, telling him that I have talked about my back hurting since basically I could talk. He didn't believe it so I grew up just assuming everyone felt like I did and it was normal to be in pain so never really said anything about it to anyone but my parents so I honestly don't know what it's like not to be in pain. I don't know what pain free feels like. It's just something I don't think I have ever experienced. It used to be tolerable but it has always been there.

I was also really clumsy to the point that all throughout school to the point that my gym teachers always took notice. I was the kid with glasses, for a year, braces never grew from the age of two to the age of 12 and started putting on weight in my later childhood, passing out like a goat, hand learning disabilities and was picked on by the main bully of the school so badly that my own friends became afraid to associate with me at school afraid they would be picked on too. I got beat up so badly that I got one and possibly two traumatic brain injuries from the same kid. I eventually was pulled out of the school.

When I switched schools my popularity swung the opposite way and I also finally started to grow and lose a lot of my weight. Unfortunately this is about the same time I believe my gastroparesis started really flaring up. A lot of my peers started believing I was anorexic because I didn't want to eat because it hurt too bad to eat. It wasn't that I thought I was overweight or anything. This was around my 7th grade year and going into the 10th grade I weighed 79lbs so I was probably around that or a little less. I was very thin and maybe about 4��9” in the 7th grade and 5' in the tenth grade. Anyhow I knew I wasn't overweight by any means and was skin and bones but it hurt so bad to eat that eating wasn’t enjoyable. I also had a lot of GI issues and believe at this time I was still in colonics to avoid having my intestines resected. My mom took me to a lot of doctors who blew me off and made it sound as if I’m just a kid so probably making my symptoms up for attention.

I finally got a new GP that year who looked at me and knew exactly what was wrong telling me I had celiac disease. He sent me for my first barium swallow which was absolutely disgusting and miserable as I got an intestinal blockage from the barium, he ran an Elisa test, sent me for my first colonoscopy and did an IgG/ IgA test which back then was very new and cost $500 to send my blood to Florida to be tested for allergies between all of them I had celiac disease and 17 other food allergies. I saw a nutritionist who said basically they didn't know what to tell me because I had too many allergies but I eventually figured it out and some of them luckily I only had to go a year without before I was able to trial them again to see if my GI system had healed enough from how severe my Celiac Disease was to be able to tolerate them again. I am still allergic to all of them but at least now I can tolerate a lot of my allergies in moderation but there are a few I will never be able to have again.

High School was when the real problems started. I started having a lot of chest pain, trouble breathing, and was in and out of the hospital. I started having cardiac arrests and seizures which is when the really serious medical abuse and neglect took off, I was sent home from hospitals told noting was wrong even after a cardiac arrest. During this cardiac arrest my mom had to resuscitate me because the nurses refused to come to the room when the alarms went off believing that I had simply pulled off my leads for attention. This happened all the way through high school with no reason why until eventually someone listened when I was 23.

My childhood was different than some may have experienced. I was socially awkward and had a lot of quarks, some embraced them and some hated them. I was bullied terribly at my first school, extremely popular at my second school and fell right in the middle of the two at my third school so it allowed me to get a lot of different perspectives and if there was anything to take from my first school, it was not to be that bully and allowed me to make friends with a wide range of individuals. My childhood may have been complex but I have no regrets. Sure there are things I wish were different such as the influence my siblings had on me which made me so uptight about following rules to avoid being like them and getting diagnosed much sooner but definitely no regrets.

#MyEDSChallenge #MyHSDChallenge

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 16 Prompt: Coping

Coping is something it takes time to do and something that never fully happens. You never reach a point of being content with your life when you have chronic illness but there are some things that help. My biggest, being my service dog Maggie. Not only does she give me one reason to wake up in the morning, a reason to fight when I’m very sick, she knows just how to make me laugh and always shows me how much she cares about me. I guess a dog can really do that to you.

She also helps save me embarrassment and the few times I go out she gives me the confidence to do so. Having her able to alert me before I pass out and buying me some time to hide out in public so I don't pass out in the middle of a ground and make a big scene makes me less fearful to leave my house. Having a dog that can find my parents or even a random person and bring them back to me if I need help allows me to go off on my own in a store feeling as if I have that little bit of independence. She is and my parents are the ones that help me to come the most but my parents will come into play on another post.

Another thing that helps me to cope but will also be mentioned in another post is support groups. Though I can't exactly call many of these people friends, I can call them acquaintances. I have met a lot of people from a lot of different walks of life. Also as mentioned in a past post, I used to be a nurse for children with severe to profound developmental delays and physical disabilities as well as being a home health aid. I see some of them and this helps me realize how much worse things can be, what I’m lucky to have and to really count my blessings.

It hurts to see other young people like myself in nursing facilities because they didn't have the family to help take care of them, the ones who have no way to communicate other than eye gaze, the ones on respirators and TPN. It’s hard to come when you have lost so much but it also teaches you to appreciate the little things, to count your blessings and to not take anything for granted.

#MyEDSChallenge #MyHSDChallenge