I really should be going to sleep right now, because I have to get up early to drive to Denver for a medical test, but I have had several thoughts over the last several days and wanted to share them, if for no other reason than to get them out of my head, although I hope that my thoughts might be of some help and/or encouragement to others in similar situations.
When I was in high school, one of my co-workers called me Pollyanna, like the Haley Mills character and movie. She called me this because she said I looked like the character and had a similar attitude. Sometimes the phrase "Pollyanna attitude" is used in a negative way to describe someone with an overly positive disposition, someone that denies or ignores that there is anything negative in the world. I do try my best to have a positive attitude, but am fully aware that life is hard. My life has certainly not been easy or what I have expected it to be.
In a recent email to a dear friend, I wrote the following and truly believe what I wrote.
As I said, we all have trials and challenges, and I believe that it's what we do with those trials that defines who we are and what our lives become. I'm certainly not saying it's easy or that I never break down and cry and want to give up. Of course I do, it happens. But, for me at least, giving up, especially at my age of 29, is not an option. I have too much left to do, to accomplish, too many people to help in this journey of crazy twists and turns that makes up life, especially life with one or more chronic health conditions. And while I am certainly no doctor, and would never claim to know even a smidgen of what you all learn and practice, I do like to think that I have learned certain medical conditions pretty well and how to help others advocate for themselves, along with me advocating for myself, which is something that you taught me. I know I'm going to have quite the fight ahead to find a doctor that will perform a hysterectomy on a 29 year old, but based on everyone with EDS I have talked to and my gut feeling, I know it's the right decision.
My rambling point is simply to say that life is what we choose to make of it, in spite of the curveballs that may be thrown our way. As much of a control freak as I am, I've gotten to a point where I TRY not to have to control everything, because the truth ia, healthwise, I can't control much. But that doesn't mean my life should stop or I should give up my dreams and what I'm passionate about. In fact, much of that has come clearer the last several weeks. I don't know what life has in store, but as my profile picture on FB says, I want to inspire people. Even if just one person looks at me and my life and chooses not to give up, then I have done something meaningful with my life. I don't of my story or myself as that special or inspirational, but maybe someday, I will write the book everyone keeps telling me I need to write or I'll be on that Ted Talk. I've found my niche and my passion and now just need to get the word out. I am presenting at a conference in March about advising students with chronic health conditions. Maybe someday, I'll even have an office in the new health center :)
My friend wrote the following back to me:
Julie, as ever, you are inspirational . I love to hear your enthusiasm and aspirations of changing the world. You have already, you know, person by person.
Her words touched my heart and although I don't think of myself as inspirational, I try my best to be an example and to help others the best I can. While I am not grateful that I have EDS and all the other medical issues, I am grateful that I am able to use my knowledge and experience to help others, like my wonderful Spoonies.
I had the wonderful chance to go and visit with a very dear friend out of town for a long weekend, including Valentine's Day. She is one of the only people that understands the hardship of chronic pain and mystery medical problems. We used to be roommates and joked that we would wrestle at night and that's why we always had braces and splints on and having surgeries. We would trade off having surgeries and taking care of each other. One time, we ran into each other in the parking lot of a large medical complex, leaving notes on each other's cars and laughed hysterically. No one else seemed to think it was as funny as we did. We would spend our Friday nights curled up under blankets with space heaters, watching Golden Girls and What Not to Wear. She is married now, with an adorable two year old girl that I got to spend four days playing with and spoiling and getting to be Aunt Julie. My friend and I got to spend an hour together watching What Not to Wear, just like old times, and it was a perfect episode. There were TWO references to Golden Girls in the episode. We also got to go shopping together, like old times. We didn't make it nearly as long as we used to, but had fun nonetheless. I was able to snuggle with a sweet, busy little girl and read books together. It was a wonderful break from my everyday life and I am grateful that I took the time to do that.
I've learned, that's what coping with and living with chronic illness is all about. Finding the moments and experiences to be grateful for, taking the opportunity to do things that you might think you can do later. Enjoying the little moments, like watching a funny video on YouTube, finding that cute pair of shoes on sale, the warm day in February when the sun warms your face. Realizing that you have been able to make a difference in at least a few lives when you come into your office the Monday after Valentine's Day and find that some of your students have left you a very thoughtful and sweet handmade gift. Being able to laugh at the look the ER doctor gives you when you list off all the reasons that you and brain surgery and he asks you to slow down and spell them for him. Sitting in front of a classroom full of 100 college students and getting them to participate in the song, "We're Going on a Bear Hunt" and being able to laugh and be silly in a college class. Getting an email from a student that thanks you for your influence and example. Even in the midst of pain and trials and challenges and illness and the unknown, there are always moments to be grateful for and it's important to remember those moments, document them even, so that when we are feeling down and hopeless, we have something to remember or read or look at to remind us of all we have to be grateful for. I keep a box in my office with positive comments from course evaluations and a folder in my email for uplifting emails and notes sent to me. When I am having a bad day, am doubting myself, am feeling inadequate, feeling like a burden at my job and not an asset, I read those notes and emails and cards.
This week in my class, we have been talking about music and movement with kids inside the classroom and outside the classroom. There are two videos I always show, videos that I find inspirational, and yes, make me cry because I'm a sap. One of my students from the first semester I taught my class sent me a card before a surgery with a picture of a cat with bandages on it and the note inside said that he always thinks of me when he hears the Katy Perry song "Roar" because of this video and reminded me that I am also a fighter. Here are the links to the videos and I encourage you to watch and be inspired, be encouraged and be grateful.
"Roar" by Children's Hospital at Dartmouth-Hitchcock
https://www.youtube.com/watch?v=lnG3MKos87A
"Brave" by University of Minnesota Masonic Children's Hospital
https://www.youtube.com/watch?v=N8xnLkyKgsE
It may be a slightly unrealistic and somewhat hokey show, but I quite enjoyed and even related to the show "The Red Band Society". It's about a group of teenagers with different chronic conditions that are currently living in a hospital and they basically run the place. Tonight I watched the season finale, which was pretty perfect and so that is where the quote that I will end with comes from. It was said by a nurse to the mom of one of the patients and says well what I tell my students, what I tell myself, why I will continue to fight to change the name of a certain office on my campus to use person first language. I am not just EDS girl or POTS girl or Chiari girl or mystery medical conditions girl. I am Julie and I am so much more than just a person with multiple chronic health conditions.
"That's just her disease, it's not who she is."
Wednesday, February 18, 2015
Sunday, February 8, 2015
Find and follow your passion...no matter what!
It has certainly been an interesting couple of weeks, leading me to do some things that I don't normally do. I have spent quite a bit of time in self reflection and pondering what it is that I really want to do with my life. As a graduate of an amazing counseling and career development program, I was taught many times that following your passion is the ultimate career goal. I have actually taken the time to examine my life and sometimes it takes having something "taken away" to help you realize what it is truly important to you and what your passion is. Feeling so many things today I'm feeling scared, alone, in pain, hopeless, but hopeful at the same time. I'm finally making decisions about my future based on my passion and what I think I am good at it, and now I just need to figure out a way to feel as well as possible to accomplish those goals and dreams. My ultimate goal is to open a part time counseling practice dedicated to working with people with chronic health conditions. There aren't many things in life that I feel I am good at or can offer the world, but I am a good counselor and helping others makes me feel better physically and emotionally. I refuse to believe that my life is over at 29 years old and am willing to do what it takes and do my best to convince doctors to do what it takes to allow me to live my life to the best of my ability. If that means brain and spine surgery again, then I'll do it. If it means a hysterectomy, I'll do it. I know my life will never be easy medically and I know I'll never be pain free, but there has to be more to life than just barely feeling like I'm surviving. I want to do more it's my life than sleep through the weekend to be able to make it to Monday and through the work week. I want to do my part to make a small difference in the world and I know how I can do it and know I just need to figure out how to be the best me to be able to do that. I know it will take time, but I am taking steps to work towards my licensed professional counselor license, so that eventually I can do this. I'm not so good at this part, but I'm trying to take it one day at a time, research my options, and make the best decision I can.
As a counselor, former special education teacher, and person in general, I tend to focus on strengths rather then areas of challenge. I'm great at doing that with other people, but not as great at doing it with myself. Going through my counseling graduate program was an incredible, life changing experience for me. I was able to take many assessments and have many experiences that helped me learn more about myself than I ever thought I would. I also had incredible mentors that continue to be a strong influence in my life. One of the assessments that I took, one that I would recommend to anyone and everyone to take, is the Strengths Finder 2.0. I was never someone who thought of myself as having many strengths or talents. I never really knew how to answer the question of "what are you good at?" I always associated talents with things like playing an instrument, writing, playing sports, etc. Taking this assessment allowed me to see strengths and talents in a whole new light, and gave me vocabulary and language to put words to things I never knew were actually talents of mine. My top five strengths are: learner, discipline, connectedness, belief, and restorative. For those that know me, it's not a huge surprise that my top strength is learner :) The strength that is most relevant to this post is, connectedness is most important. The description of this strength is at the end of the post. Basically, it means that I have faith that there are links between everything and nothing happens without a reason. While I don't enjoy having EDS and all the other conditions that keep appearing, I don't believe that being diagnosed with EDS and having all the experiences I have had, including being admitted to the graduate program I was admitted to when I applied with less than two weeks notice, being assigned the advisor that I was assigned to, writing my thesis on adolescents with chronic health conditions, starting a group for students with chronic health conditions at my university, and somehow ending up as the "chronic illness resource/magnet" at my university. All of these experiences are connected and have led me to finally embrace what my true passion in life is. I don't see this career development as simply a career move or a job. It's my calling in life, a calling that I can no longer ignore and hope to be able to pursue, no matter what it takes or how long it takes.
If this topic interests you, I encourage you to read Make Your Job A Calling by Brian J. Dik and Ryan D. Duffy.
For more on strengths and career, check out this video by Marcus Buckingham https://www.youtube.com/watch?v=Jo5Sh2DoVY8
The quote for this post comes from George Eliot. "What do we live for if it is not to make life less difficult for each other?"
As a counselor, former special education teacher, and person in general, I tend to focus on strengths rather then areas of challenge. I'm great at doing that with other people, but not as great at doing it with myself. Going through my counseling graduate program was an incredible, life changing experience for me. I was able to take many assessments and have many experiences that helped me learn more about myself than I ever thought I would. I also had incredible mentors that continue to be a strong influence in my life. One of the assessments that I took, one that I would recommend to anyone and everyone to take, is the Strengths Finder 2.0. I was never someone who thought of myself as having many strengths or talents. I never really knew how to answer the question of "what are you good at?" I always associated talents with things like playing an instrument, writing, playing sports, etc. Taking this assessment allowed me to see strengths and talents in a whole new light, and gave me vocabulary and language to put words to things I never knew were actually talents of mine. My top five strengths are: learner, discipline, connectedness, belief, and restorative. For those that know me, it's not a huge surprise that my top strength is learner :) The strength that is most relevant to this post is, connectedness is most important. The description of this strength is at the end of the post. Basically, it means that I have faith that there are links between everything and nothing happens without a reason. While I don't enjoy having EDS and all the other conditions that keep appearing, I don't believe that being diagnosed with EDS and having all the experiences I have had, including being admitted to the graduate program I was admitted to when I applied with less than two weeks notice, being assigned the advisor that I was assigned to, writing my thesis on adolescents with chronic health conditions, starting a group for students with chronic health conditions at my university, and somehow ending up as the "chronic illness resource/magnet" at my university. All of these experiences are connected and have led me to finally embrace what my true passion in life is. I don't see this career development as simply a career move or a job. It's my calling in life, a calling that I can no longer ignore and hope to be able to pursue, no matter what it takes or how long it takes.
If this topic interests you, I encourage you to read Make Your Job A Calling by Brian J. Dik and Ryan D. Duffy.
For more on strengths and career, check out this video by Marcus Buckingham https://www.youtube.com/watch?v=Jo5Sh2DoVY8
The quote for this post comes from George Eliot. "What do we live for if it is not to make life less difficult for each other?"
Connectedness
Shared Theme Description
People who are especially talented in the Connectedness theme have faith in the links between all
things. They believe there are few coincidences and that almost every event has a reason.
What makes you stand out?
Driven by your talents, you sense every event is somehow the consequence of a series of actions,
reactions, or lack of actions. You can accept that which cannot be fully explained using logic. You say
there are no accidents. You are confident that things are linked together for a purpose that may or
may not be revealed to you. Because of your strengths, you desire to dictate the circumstances of
your existence. You refuse to be a victim. You aim to leave your mark on the world. Although you
want to be in charge of everything, you realize this is unrealistic. Why? You sense you are somehow
linked to every human being on the planet. Whatever you choose to do or not do affects them. Their
choices eventually affect you. You walk a tightrope between needing to manage every part of your life
and knowing this is impossible. Instinctively, you routinely isolate facts that link ideas, events, or
people. You are especially sensitive to how one person’s optimistic or negative thoughts can affect
the entire human family. This prompts you to pay close attention to what individuals and groups think
and do. It’s very likely that you argue that hard work influences the course of your life more than
anything else. You make your own good fortune by preparing yourself to take advantage of
opportunities as they arise. Each time you are successful, you can outline exactly what you did to
reach a goal. You link together facts, incidents, conversations, or available resources to understand
your accomplishments. You resist the notion that life is nothing more than a game of chance. By
nature, you occasionally sense you are part of something bigger or more important than yourself.
Maybe this conviction influences choices you make in life.
Thursday, February 5, 2015
But you don't look sick?!
I haven't had a chance to make my blog look pretty like so many others I have seen, but honestly since it's mostly about my ramblings, I guess that isn't as important. I've never been one who has found writing particularly therapeutic, but this seems to be different. Maybe it's because what I'm writing about is so personal. Which is odd because I'm a fairly private person, and yet here I am, sharing very personal and private thoughts with the world, or at the least the few people in the online world that may wander onto my page.
It has been a difficult week or so for me. Medically, personally, professionally. I've been treated in ways that no one deserves to be treated by medical professionals, by the very people that we go to to feel better, that we trust to listen and believe us, thinking that they are in the medical profession because they care about people and want to make them better. Unfortunately, if you are a person with a chronic health condition, you learn quickly what the medical system is really like, at least for those of us that don't look sick or whose symptoms don't fit in a box and can't be diagnosed by a simple blood test and fixed with a couple of pills. The lack of knowledge about zebra conditions leads us zebras to learn everything we can about our condition(s), possible treatments, finding the few specialists who actually treat us, what doesn't work, and even want to try things that seem crazy or unconventional. Most doctors assume that we spent an hour or so on Google and are hypochondriacs or attention seeking, when in reality, we know WAY more about our conditions than they do. The few good ones admit that and encourage the research and online forums and support groups; those are few and far between. I've been lucky enough to have had one of these doctors during graduate school, but she has retired and moved on to new adventures (but still checks on me via Facebook). Another problem people with chronic health conditions face is that we need to find not just one doctor, but a team of doctors to treat the many symptoms and issues we face.
One of the first questions I ask a new doctor is, "I have Ehlers Danlos Syndrome - do you know that is?" The cocky ones get offended and say of course they do (which usually means they don't). The honest ones say no or just a little about it. The great ones, regardless of whether they say yes or no, voluntarily do research on their own to learn more about it and take any research or information the patient provides. One of my favorite doctors ever, my physiatrist who has unfortunately moved away, actually read my chart and all the paperwork I had filled out, plus the notes my doctor put in the referral, asked me a few questions, put down the clipboard and looked at me and said, "This sucks!" I burst out laughing and said, "Yes, it does." One doctor asked me if having EDS meant I could do circus tricks and others have asked me to show the visiting doctor, med student, army ranger medic, whoever, to show them what I can do and how I can bend. The most recent PA I encountered, answered yes when I asked about EDS, but then proceeded to tell me that EDS doesn't cause pain and why I was under the impression that it did? I tried not to let my jaw drop and explained that my joints are constantly unstable, pop in and out of place all the time, and all my joints experience multiple micro tears every time that happens. Not to mention the muscle spasms, hardware in my head and neck, barometric pressure and weather changes and many other things that contribute to pain. I wish someone would invent a technology that allowed doctors and other medical professionals to experience a simulation of what it is like to be in a patient's body, experience what we experience, and then they may be less quick to write us off or dismiss us. I would love it if every medical professional that treated me with contempt, disgust, disrespect, boredom, and/or was rude could experience what spending 5 minutes in my body is like. Then they may have an entirely different perspective.
So, who wants to step into my shoes for a little while or the shoes of any other person with a chronic condition who "doesn't look sick" and especially if you are young? Try a little social experiment. Borrow a handicapped parking pass from someone, go to the store, and use the pass to park in a handicapped parking space, and then walk into the store. See how many people look at you, glare at you or even yell at you. Use the elevator when people are around and see how many looks you get. Put a wrist brace on or your arm in a sling, go somewhere public like a store, and see how many looks you get, how many random strangers come up to you and ask what happened, invade your privacy and ask very personal questions, offer advice about something that worked for their brother's best friend's aunt's neighbor. Borrow some crutches and go to a place that has no "push button" doors to open on their own and try to open the doors, while staying upright on your crutches and see if anyone stops to help. Use those same crutches to walk a decent distance or go up or down some stairs and see how long your arms and hands last. Use the grocery store wheelchair and try to open a door in the freezer section or reach something out of your reach and see if anyone offers to help. Or any other ideas that may come to you.
Try it and let me know what happens! And what you learned :)
"Step into my shoes and walk the life I'm living and if you get as far as I am, just maybe you will see how strong I really am." Author Unknown
It has been a difficult week or so for me. Medically, personally, professionally. I've been treated in ways that no one deserves to be treated by medical professionals, by the very people that we go to to feel better, that we trust to listen and believe us, thinking that they are in the medical profession because they care about people and want to make them better. Unfortunately, if you are a person with a chronic health condition, you learn quickly what the medical system is really like, at least for those of us that don't look sick or whose symptoms don't fit in a box and can't be diagnosed by a simple blood test and fixed with a couple of pills. The lack of knowledge about zebra conditions leads us zebras to learn everything we can about our condition(s), possible treatments, finding the few specialists who actually treat us, what doesn't work, and even want to try things that seem crazy or unconventional. Most doctors assume that we spent an hour or so on Google and are hypochondriacs or attention seeking, when in reality, we know WAY more about our conditions than they do. The few good ones admit that and encourage the research and online forums and support groups; those are few and far between. I've been lucky enough to have had one of these doctors during graduate school, but she has retired and moved on to new adventures (but still checks on me via Facebook). Another problem people with chronic health conditions face is that we need to find not just one doctor, but a team of doctors to treat the many symptoms and issues we face.
One of the first questions I ask a new doctor is, "I have Ehlers Danlos Syndrome - do you know that is?" The cocky ones get offended and say of course they do (which usually means they don't). The honest ones say no or just a little about it. The great ones, regardless of whether they say yes or no, voluntarily do research on their own to learn more about it and take any research or information the patient provides. One of my favorite doctors ever, my physiatrist who has unfortunately moved away, actually read my chart and all the paperwork I had filled out, plus the notes my doctor put in the referral, asked me a few questions, put down the clipboard and looked at me and said, "This sucks!" I burst out laughing and said, "Yes, it does." One doctor asked me if having EDS meant I could do circus tricks and others have asked me to show the visiting doctor, med student, army ranger medic, whoever, to show them what I can do and how I can bend. The most recent PA I encountered, answered yes when I asked about EDS, but then proceeded to tell me that EDS doesn't cause pain and why I was under the impression that it did? I tried not to let my jaw drop and explained that my joints are constantly unstable, pop in and out of place all the time, and all my joints experience multiple micro tears every time that happens. Not to mention the muscle spasms, hardware in my head and neck, barometric pressure and weather changes and many other things that contribute to pain. I wish someone would invent a technology that allowed doctors and other medical professionals to experience a simulation of what it is like to be in a patient's body, experience what we experience, and then they may be less quick to write us off or dismiss us. I would love it if every medical professional that treated me with contempt, disgust, disrespect, boredom, and/or was rude could experience what spending 5 minutes in my body is like. Then they may have an entirely different perspective.
So, who wants to step into my shoes for a little while or the shoes of any other person with a chronic condition who "doesn't look sick" and especially if you are young? Try a little social experiment. Borrow a handicapped parking pass from someone, go to the store, and use the pass to park in a handicapped parking space, and then walk into the store. See how many people look at you, glare at you or even yell at you. Use the elevator when people are around and see how many looks you get. Put a wrist brace on or your arm in a sling, go somewhere public like a store, and see how many looks you get, how many random strangers come up to you and ask what happened, invade your privacy and ask very personal questions, offer advice about something that worked for their brother's best friend's aunt's neighbor. Borrow some crutches and go to a place that has no "push button" doors to open on their own and try to open the doors, while staying upright on your crutches and see if anyone stops to help. Use those same crutches to walk a decent distance or go up or down some stairs and see how long your arms and hands last. Use the grocery store wheelchair and try to open a door in the freezer section or reach something out of your reach and see if anyone offers to help. Or any other ideas that may come to you.
Try it and let me know what happens! And what you learned :)
"Step into my shoes and walk the life I'm living and if you get as far as I am, just maybe you will see how strong I really am." Author Unknown
Wednesday, February 4, 2015
Let's give this a try...
In an effort to find a hobby, several people suggested that I start a blog. I don't know that anyone will be interested in what I have to say, but we shall see. And because I can't sleep, no time like the present to start! Here is my brief story as an introduction.
For as long as I can remember, I wanted to be a teacher. I coerced my sister into playing school, along with my dolls and stuffed animals as a young child. Whenever I was asked what I wanted to do when I grew up, my answer was always the same - be a teacher. I've always loved kids, been called a kid magnet and a baby whisperer. I went to school for my undergraduate degree in Early Childhood Education. After graduation, I looked for a job and paid my dues in the job search process. I finally got my dream job as a preschool teacher in 2009 and loved it. I was also working on my master's degree in Early Childhood Special Education and was able to teach special education while working on my degree. Everything seemed wonderful and I was happy.
Then came the day that I will never forget and the day that changed my life as I knew it forever. After years of searching for answers to my seemingly random symptoms, I was diagnosed with a condition called Ehlers Danlos Syndrome, EDS for short. It's a genetic connective tissue disorder that causes my body to produce defective collagen and so it affects anything that is connective tissue, which is just about everything in the body, especially the ligaments and tendons. My ligaments are like taffy- they stretch and then don't go back to normal, which leads to unstable joints that pop in and out of place multiple times a day and multiple joint surgeries to stabilize joints. I have a few analogies that seem to help people understand EDS a little better. One, I'm what would happen if Humpty Dumpty and Gumby had a kid. Two, I'm like Elastigirl from The Incredibles. Three, I'm like Scarecrow from the Wizard of Oz, in the scene when all of his straw is pulled out and then haphazardly shoved back in. I also have developed multiple co-occurring conditions over the years. The most recent condition related to EDS that I had was Chiari malformation and cranio-cervical instability. Basically, my brain had shifted and slumped and was compressing my brainstem and my neck was unstable, turning me into a bobble head. For treatment, I went to the experts at the The Chiari Institute in New York and had posterior fossa decompression and crania-cervical fusion from the base of my skull through C2 on August 22, 2013. I felt amazing for several months and then things started to go downhill again. But more on that later.
The doctor that diagnosed me told me that yes, I had EDS, I needed to quit my job, go on disability, and come back if I have a new problem, because there was nothing they can do for EDS. I was 25 years old and my dream job had been taken away from me. I was heartbroken and devastated. But I knew that my life couldn't be over, just the life I knew.
I decided to return to graduate school and was incredibly blessed to be admitted to a wonderful program with incredible faculty and learned more about myself than I ever imagined. I completed my thesis on adolescents with chronic health condition, which was eye opening and very rewarding. After graduating in May 2014 with my master's degree in Counseling and Career Development and was incredibly fortunate to be hired as an academic advisor and instructor for the same department at my university that I interned with and am very blessed to work with incredible coworkers and supervisors that have been an incredible support throughout all of my health challenges. Although I can't teach little ones anymore, I now have the opportunity to teach the next generation of teachers.
Somehow, I ended up becoming the "chronic illness" magnet for students at my university. I quickly realized the need for support for college students with chronic health conditions and founded a student organization for students with chronic health conditions on campus, which has blossomed and flourished far beyond what I had imagined would happen. I feel incredibly blessed to work with these wonderful, brave, resilient students. They inspire me every day.
One of the reasons I went into teaching was to make a difference in the world, as cheesy as that sounds. Living with multiple chronic health conditions has opened up many doors and avenues to do this in ways I had never imagined. My passion in life has become to educate others about what life is like for people living one or more chronic health conditions, raise awareness about this type of life and about "rare" diseases or conditions. With our student organization, we have begun the process of educating as many people on campus and initiating change to make life better for these students.
Instead of covering the latest Kardashian scandal or which football team won a game, the media should be focusing on helping change the societal perception of what chronic illness looks like, especially when the condition is invisible, and the person doesn't look sick. The medical system is seriously flawed. Those of us that are the sickest have to fight the hardest to be taken seriously, and we generally know way more about our conditions that our doctors do. Society judges us, like when I get glared at for using my handicapped parking pass, sees us as lazy, crazy, and/or drug seeking. Something must change. Something has to change. And my hope is that I can do my small part to help this happen.
If you want to know what it's like to live with a chronic health condition, check out The Spoon Theory by Christine Miserando. It's the best way I've found of explaining life with a chronic condition to others. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
To close for now, why the zebra? Why fight like a zebra? In medical school, future doctors are taught that if you hear hoofbeats, assume it's a horse, meaning problems and diagnoses are usually something simple and there isn't a need to look outside the box. We say, sometimes hoofbeats are a zebra. So the symbol for EDS is a zebra, which explains why my house and office are covered with zebra print and zebra stuffed animals and anything else I can find with zebras on it. Luckily, I have found an incredible online zebra herd to help me cope with the challenges that come with living with so many "rare" conditions. So the next time you see a zebra, maybe for a brief second you'll think of EDS and I will have done my job of raising awareness.
For more information about Ehlers Danlos Syndrome, visit www.ednf.org
For more information about Chiari malformation, visit http://www.conquerchiari.org/index.html
Feel free to ask questions, I'm not shy about any of my medical conditions and if it can help someone else, then maybe my trials and challenges will have a purpose.
I love quotes, so will do my best to share my favorites at the end of each blog post.
For as long as I can remember, I wanted to be a teacher. I coerced my sister into playing school, along with my dolls and stuffed animals as a young child. Whenever I was asked what I wanted to do when I grew up, my answer was always the same - be a teacher. I've always loved kids, been called a kid magnet and a baby whisperer. I went to school for my undergraduate degree in Early Childhood Education. After graduation, I looked for a job and paid my dues in the job search process. I finally got my dream job as a preschool teacher in 2009 and loved it. I was also working on my master's degree in Early Childhood Special Education and was able to teach special education while working on my degree. Everything seemed wonderful and I was happy.
Then came the day that I will never forget and the day that changed my life as I knew it forever. After years of searching for answers to my seemingly random symptoms, I was diagnosed with a condition called Ehlers Danlos Syndrome, EDS for short. It's a genetic connective tissue disorder that causes my body to produce defective collagen and so it affects anything that is connective tissue, which is just about everything in the body, especially the ligaments and tendons. My ligaments are like taffy- they stretch and then don't go back to normal, which leads to unstable joints that pop in and out of place multiple times a day and multiple joint surgeries to stabilize joints. I have a few analogies that seem to help people understand EDS a little better. One, I'm what would happen if Humpty Dumpty and Gumby had a kid. Two, I'm like Elastigirl from The Incredibles. Three, I'm like Scarecrow from the Wizard of Oz, in the scene when all of his straw is pulled out and then haphazardly shoved back in. I also have developed multiple co-occurring conditions over the years. The most recent condition related to EDS that I had was Chiari malformation and cranio-cervical instability. Basically, my brain had shifted and slumped and was compressing my brainstem and my neck was unstable, turning me into a bobble head. For treatment, I went to the experts at the The Chiari Institute in New York and had posterior fossa decompression and crania-cervical fusion from the base of my skull through C2 on August 22, 2013. I felt amazing for several months and then things started to go downhill again. But more on that later.
The doctor that diagnosed me told me that yes, I had EDS, I needed to quit my job, go on disability, and come back if I have a new problem, because there was nothing they can do for EDS. I was 25 years old and my dream job had been taken away from me. I was heartbroken and devastated. But I knew that my life couldn't be over, just the life I knew.
I decided to return to graduate school and was incredibly blessed to be admitted to a wonderful program with incredible faculty and learned more about myself than I ever imagined. I completed my thesis on adolescents with chronic health condition, which was eye opening and very rewarding. After graduating in May 2014 with my master's degree in Counseling and Career Development and was incredibly fortunate to be hired as an academic advisor and instructor for the same department at my university that I interned with and am very blessed to work with incredible coworkers and supervisors that have been an incredible support throughout all of my health challenges. Although I can't teach little ones anymore, I now have the opportunity to teach the next generation of teachers.
Somehow, I ended up becoming the "chronic illness" magnet for students at my university. I quickly realized the need for support for college students with chronic health conditions and founded a student organization for students with chronic health conditions on campus, which has blossomed and flourished far beyond what I had imagined would happen. I feel incredibly blessed to work with these wonderful, brave, resilient students. They inspire me every day.
One of the reasons I went into teaching was to make a difference in the world, as cheesy as that sounds. Living with multiple chronic health conditions has opened up many doors and avenues to do this in ways I had never imagined. My passion in life has become to educate others about what life is like for people living one or more chronic health conditions, raise awareness about this type of life and about "rare" diseases or conditions. With our student organization, we have begun the process of educating as many people on campus and initiating change to make life better for these students.
Instead of covering the latest Kardashian scandal or which football team won a game, the media should be focusing on helping change the societal perception of what chronic illness looks like, especially when the condition is invisible, and the person doesn't look sick. The medical system is seriously flawed. Those of us that are the sickest have to fight the hardest to be taken seriously, and we generally know way more about our conditions that our doctors do. Society judges us, like when I get glared at for using my handicapped parking pass, sees us as lazy, crazy, and/or drug seeking. Something must change. Something has to change. And my hope is that I can do my small part to help this happen.
If you want to know what it's like to live with a chronic health condition, check out The Spoon Theory by Christine Miserando. It's the best way I've found of explaining life with a chronic condition to others. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
To close for now, why the zebra? Why fight like a zebra? In medical school, future doctors are taught that if you hear hoofbeats, assume it's a horse, meaning problems and diagnoses are usually something simple and there isn't a need to look outside the box. We say, sometimes hoofbeats are a zebra. So the symbol for EDS is a zebra, which explains why my house and office are covered with zebra print and zebra stuffed animals and anything else I can find with zebras on it. Luckily, I have found an incredible online zebra herd to help me cope with the challenges that come with living with so many "rare" conditions. So the next time you see a zebra, maybe for a brief second you'll think of EDS and I will have done my job of raising awareness.
For more information about Ehlers Danlos Syndrome, visit www.ednf.org
For more information about Chiari malformation, visit http://www.conquerchiari.org/index.html
Feel free to ask questions, I'm not shy about any of my medical conditions and if it can help someone else, then maybe my trials and challenges will have a purpose.
I love quotes, so will do my best to share my favorites at the end of each blog post.
- "Friendship is born at that moment when one person says to another: What! You too? I thought I was the only one." CS Lewis
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