FOR IMMEDIATE RELEASE: 04/23/2018 Angela Braun (715) 370-1736
Meagan’s HOPE Memorial Walk Ehlers Danlos Syndromes Awareness & Suicide Prevention
Wausau, WI: EDS Wisconsin, Inc., EDS Wellness, and the Braun Family are hosting the First Annual Meagan’s HOPE Memorial Walk for EDS Awareness & Suicide Prevention at Wausau’s Oak Island on Saturday, May 5, 2018. Special Guests in attendance include Geneticist Dr. Juan Dong and Jessica Reed of PreventionGenetics, Pain Specialist Linda S. Bluestein, M.D., Executive Director Kendra N Myles of EDS Wellness, Executive Director John Ferman of EDS Awareness, and the Co-Founder of Advanced Tele-Genetic Counseling. A special announcement will be made at 1:00 pm followed by a brief Q & A session and a one mile Walk.
Ehlers Danlos syndromes (EDS) are a group of heritable connective tissue disorders that impact individuals of all ages & genders. Frequently misdiagnosed as Fibromyalgia, Chronic Fatigue Syndrome, or various psychosomatic illnesses, EDS affects nearly every body system since connective tissue is what holds the body together like glue. Many of those who have EDS experience daily pain, excessive fatigue, increased bleeding, and they have overly flexible joints which can lead to joint dislocations, as well as many other seemingly unrelated symptoms. Support and resources for medical professionals and patients affected by EDS remains limited. Sadly, EDS frequently goes undiagnosed for many years causing both patients and medical professionals needless suffering. Early diagnosis is validating and empowering for patients, their loved ones and medical professionals! Diagnosis enables proper treatment strategies and fewer unnecessary medical visits.
Born December 12, 1987, Meagan Rae Braun was a kind, caring, loving individual with a most beautiful, gentle soul. She grew up in Medford, WI and most recently resided in Weston. Meagan was an outstanding mother of two young children and truly enjoyed helping others while continually seeking knowledge, truth, peace and harmony. Even so, behind her beautiful smile, Meagan suffered with multisystemic illnesses including EDS, hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS), allergies and sensitivities, and more. Frustrated with limited treatment options for her health, in addition to battling postpartum depression, Meagan lost all hope resulting in her death from suicide on April 24th, 2017. The Walk is being held in honor of Meagan’s gracious spirit.
The Mission of the not-for-profit organization EDS Wisconsin is to provide support and resources to Wisconsin patients and medical professionals about Ehlers-Danlos Syndromes and related conditions via education and research. Together with the Braun Family and the prestigious national 501(c)3 organization EDS Wellness, this Walk is an opportunity to increase awareness, support, resources, and education for those affected by EDS and suicide. There will be raffle prizes, t-shirts and balloons for participants.
This event is proudly supported and sponsored by Wisconsin Integrative Pain Specialists, Linda S Bluestein, M.D., Prevention Genetics, The Caring Tree Children’s Counseling Center, Advanced Tele Genetic Counseling (ATGC), Concrete Creations of Wisconsin, Inc., EDS Awareness, Mariah Liisa Design, LLC, and Tools of Marketing, Inc.
Please join us at Wausau’s Oak Island on Saturday, May 5, 2018 at 1:00 pm! For more information on these conditions and to pre-register go to www.EDSWI.org
Hey everyone! Before I dig into some science, I’d like to take a second to introduce myself. My name is Sam and I’m a veterinary medicine student at UW-Madison (I also have a BS in microbiology and genetics), science enthusiast, and fellow zebra. I’m very passionate about science communications and making difficult-to-understand concepts more accessible to people with non-scientific backgrounds. When it comes to EDS, I strongly believe that understanding the biology behind the disease empowers patients and allows them to ask their doctors the right questions to get proper care. Additionally, I want to provide resources for medical professionals so they may learn to care for patients with diseases they may not be familiar with – I’ll be leaving citations at the end of each post for this purpose. I’m exceedingly grateful to EDS WI, Inc. for giving me this opportunity. As this is my first post, I thought it would be fitting to discuss what collagen is, why it’s so important, and why it can cause different manifestations amongst EDS subtypes.
I also want to take a second and clarify a critical point: genes set the template for the body to make proteins, and proteins are the workhorses of the body. Proteins are what actually “do” things and carry out a function. If you have bad blueprints – mutated genes – your body doesn’t make a normal protein. Sometimes, like in the case of EDS, these abnormal proteins can have noticeable effects in the body. Proteins are made in different parts of the body at different levels due to a mechanism called “gene expression.” This is why you have nails at the end of your fingers instead of on your forehead!
Most of us know that collagen is a foundational protein found throughout the body and that it’s essentially a “building block” for different structures, but did you know there have been 29 different collagen proteins identified to date? Some of them are more common or have a bigger impact on the body when they don’t work properly compared to others. The first five types are perhaps the most important and well-understood:
Type I collagen is by far the most common in the body and makes up parts of your skin, tendons and ligaments, blood vessels, and bones. It often works in partnerships with other kinds of collagen.
Type II is a huge component of cartilage.
Types III, IV, and V help anchor cells to each other (using what’s called a “reticular fiber”) and to other types of tissue, in some cases forming barriers called “basement membranes” underneath layers of cells. These collagen types are important for microscopic, cell-to-cell activity.
As you can see, each collagen type has its own job to do, which is why there are different subtypes of EDS that can be described by which collagen protein isn’t working. For example, mutations in type III collagen can cause vEDS. This makes sense because the fibers type III makes are critical for forming the architecture of the heart and major blood vessels and give them the ability to stretch and accommodate changing amounts of blood.
Some types of EDS don’t have collagen mutations at all! In these cases, proteins in the body that have to work with or use collagen are mutated and lose their ability to do their jobs. Essentially, the body’s collagen is fine but it can’t be used properly. In periodontal EDS, C1R, a gene involved in a specific part of the immune system, is mutated and collagen is normal. However, the culprit protein uses collagen to make itself. When C1R can’t do its job, the mouth ends up becoming very inflamed, which can cause dental problems.
We’ve all heard the metaphor that likens collagen in the body to building a house. If you have a crummy foundation – mutated collagen – the house will probably wear out more quickly than it should. To add some nuance to the metaphor, imagine collagen is the wood you use to build your house. It forms the walls, the roof, the floor, and maybe some structures inside like cabinets and doors. All in all, pretty important structures to have in a place to live, right? If all of your wood is bad, it’s going to have pretty serious effects throughout the house. Maybe only the wood you use for your roof is bad – your walls will still stand, but maybe some rain leaks in through the ceiling. Maybe your carpenters don’t know how to use the perfectly fine wood you bought, and that’s the reason your floor caves in.
Thinking about collagen this way can be a really helpful tool for understanding why different types of EDS exist. There isn’t just one type of EDS, just as there isn’t one purpose for the wood you buy to build a house. Medically, you don’t treat similarly or lump together patients with different types of EDS, much like you don’t have your carpenter install your plumbing.
*Disclaimer: I am not a physician, and I am not qualified to give anyone advice about their medical condition. All posts written by me are strictly meant to inform and empower patients and medical professionals alike, with information they can use to better communicate with each other. If you have questions about your condition, please ask your doctor.
Preparation and characterization of the different types of collagen. Miller EJ, Rhodes RK. 1982. Methods Enzymol. 82 Pt A 33-64.
Collagen: a overview. Miller EJ, Gay S. 1982. Methods Enzymol. 82: 3-32.
Elastic and Collagenous Networks in Vascular Diseases. Arteaga-Solis E, Gayraud B, Ramirez F. 2011. Cell Struct. 25(2):69-72.
Periodontal Ehlers-Danlos Syndrome is caused by mutations in C1R and C1S, which encode subcomponents C1r and C1s of complement. Kapferer-Seebacher I, Pepin M, Werner R, et al. 2016. AJHG. 99(5):1005-1014.
Last night, I had the pleasure of attending a beautiful event honoring one of my favorite institutions. I want to preface what I write here with a disclaimer that our keynote speaker was incredible, inspiring, and has a story to tell that I think is as important to tell as any of ours. I think the opportunity and the honor of sharing our stories are both critical components in improving our empathy with others and also in improving our own lives–and that is why I go out of my way to write and speak about my own experiences in the mediums I do.
BUT, I walked away from last night and couldn’t stop talking about the speech with my fiance. I couldn’t stop thinking about what it would mean in the minds of people who lack the firsthand experience of losing the ability to do something, of being chronically ill, or having medical professionals tell you when something is no longer safe for you.
You see, our speaker is an amputee who lost his leg. His speech centered on having been told by his doctors a laundry list of things he could (or should) no longer do. And then, he climbed Mount Everest. Amazing, right? I mean, honestly, it’s insane. I have absolutely no concept of what it would be like to climb a mountain considering there are days I can barely convince my legs or my spine that we should work together to climb INTO my car or up a few stairs, nonetheless the highest point on Earth.
He said at one point that if you had it in your heart and your mind to do something, that’s all it would take–then you could do it. I looked around the room at that moment. I saw the glean of the beautiful lights in everyone’s eyes. I know most of the people who were in that room and I know they are primarily able-bodied individuals. I could not get out of my mind for even a second this idea that if I WANTED something badly enough, that was all it would take for me to able to do things again that my medical professionals tell me I cannot (or should not) do any longer. I don’t think this speech was meant to imply this. I guarantee if I sat down over coffee with him, we both have the frame of mind and experiences to know the difference.
So, where’s the problem? The problem is in those shiny eyes. The problem lies in the people who have no concept of what it means to be limited by your body–and that there is a big difference between setting your goals based on what your body CAN do and giving up on even having goals because your body doesn’t work the same as others–or like you want it to.
Earlier this week, we had a snow storm. It’s April, so that in itself is ridiculous, but the bigger issue came about when the snow around our apartment hadn’t been removed. This week, I’ve been using my cane and my crutches to get around because I’ve been dislocating my knees and ankles with such frequency it’s necessary for my own safety. So, when it came to be 4pm and the snow from the preceding day still hadn’t been removed, I made contact with the people in charge of our snow removal. I attempted to explain that I wouldn’t be able to safely access my apartment with the snow there. I said “I have a disability and I need to be able to get outside.”
And then, I was told, “There are other disabled people who live here and they’re more understanding than you–and some of them are even in wheelchairs.” I was filled with outrage and disgust for a multitude of reasons:
The experiences of other disabled people do not define what my experiences are. Just because you haven’t heard from others with disabilities does not discount my need.
A wheelchair is not the single indicator of a disability. That wheelchair does not by default make that person the sole indicator of disability access.
People with disabilities are no more meant to be treated as a SINGLE person than any other group–racial, gender, sexual identity or otherwise.
So, when I heard this speech and I saw the reactions, I became more concerned about the experiences I’ve had and continue to have. I cried when we got home thinking that I already have to explain why I’m parked in a handicap parking space and now, when I’m limping into the grocery store with no visible mobility aid from the parking spot they’ve already decided I don’t need, I have the additional pressure of “Well, he doesn’t have a leg and he climbed a MOUNTAIN, so why on earth can’t you get groceries without the handicap space?”
As much as the message that believing in your mind and wanting in your heart enough will make you achieve what you want to achieve is positive and inspirational, it simply isn’t reality for many people with disabilities–and it’s dangerous when an able-bodied person applies that standard. I have wanted to RUN a half marathon for years, but when I got my diagnosis and started working with my therapist and doctors, I knew that goal had to go away. It had to be set aside. It is dangerous and reckless and would potentially harm me for the rest of my days. I CAN set a goal of walking a mile for EDS Awareness next month–and that will feel to the new me just as impressive an accomplishment. Accepting your reality doesn’t make you weak. Sometimes, it makes you smart. Sometimes, it means the difference between having a moderately functional body until you are 55 and wearing your body out before you hit 30.
I can’t take the list of things my doctors tell me not to do and throw it out the window to climb a mountain. It shouldn’t take doing that for others to decide I’ve made the most of my disability situation. I think what he’s done is amazing and should be applauded. I think his accomplishments are more than deserving of recognition. I think he deserves every standing ovation and round of applause he’s received and will receive for the rest of his life.
BUT, if you are chronically ill or disabled and you do what your doctors recommend, you are allowed to celebrate the accomplishments that don’t earn those medals. You are entitled to recognize that for some people with genetic conditions, wishing and wanting and hoping and believing can’t possibly change DNA–and that might mean that maintaining gainful employment and a happy family life FEELS like your Everest. You can find Mount Everest all over the place and you can decide that other goals mean the same thing to you–and you don’t owe it to the able-bodied world to climb anything. You experience in your daily life what most can’t comprehend–and that alone makes you worthy of telling your story–tell it, with or without a mountain.
“I want you to write about this.” He supports me every step of the way…but he’s never going to let me climb a mountain.
As many of you know, EDS Wisconsin will be hosting a one-mile walk for EDS Awareness and Suicide Prevention on May 5, 2018. This walk is a milestone for the organization as it represents all of the work we have done to strengthen connections throughout the State of Wisconsin and bring about real changes for EDS patients.
We are beyond excited to announce that we have received a Hope Level Sponsor, donating $1000.00 to our event, Dr. Linda Bluestein and her clinic, Wisconsin Integrative Pain Specialists.
Dr. Linda Bluestein
Dr. Linda Bluestein’s decision to be a “Hope” Sponsor for our EDS Awareness and Suicide Prevention Walk is perhaps among the most fitting of sponsorship levels. Aside from her financial support of this specific event, Dr. Bluestein has been an avid and critical supporter of EDS Wisconsin. Her support began even before the organization was officially created and is rooted deeply in her passion for providing for those who have Ehlers-Danlos Syndrome and its related conditions. Perhaps even greater than the specific medical care Dr. Bluestein has provided for her patients, the work she does with and for them provides hope for our community—hope we will be understood, hope we can live with managed pain, and hope EDS patients can receive the care and empathy they truly need from medical providers. We are grateful for Dr. Bluestein’s financial support and just as grateful for the moral support she has provided for so many of our members and for the organization itself. She is a “Hope” level sponsor and a hope-giving medical provider, without whom EDS Wisconsin likely would not be where it is today. Thank you, Dr. Linda Bluestein, for this sponsorship and for everything you have done for us.
Dr. Bluestein’s clinic is an incredible resource for patients and we couldn’t be more thrilled to have her and the clinic as part of this special day. Please visit her website by clicking the image above or RIGHT HERE!
The other morning when I woke up ALL of my muscles ached, my head was throbbing, my eyes felt a little puffy, and I really, REALLY did not want to get out of bed. Similar to the past, I couldn’t understand what I did to cause this and knew it was best to forget even trying to figure this out because of the awful brainfog! It seemed my entire body had turned into muck overnight.
Thankfully, because of Dr Lawrence Afrin, Dr Anne Maitland, Dr Mathur, Dr Steinman, and others in the EDS community like EDS Wellness, EDS Awareness, and the EDS Society, I now know that these symptoms were a result of my being swollen, inside and out. I also now know that this swelling is called angioedema and that it is caused by “allergies.” The swelling certainly wasn’t the kind where a stranger could look at me and immediately notice. However, it was similar to the kind of swelling I had experienced my entire life that I always thought meant that I had a chubby face. I used to think that it was normal to have red marks and indents on my skin from my clothing for hours after changing, or similar red marks and indents on my skin from my bedsheets for hours after waking up.
These are some photos of me swollen and not swollen. It is NOT always this noticeable.
Despite my inability to think clearly, it was apparent that there was only one thing I knew I had to do. I reached for the medication that is ALWAYS within my reach because I know it helps significantly. I took the Gastrocrom. Unhappily, I crept out of bed, went to the bathroom and caught a glimpse of the mirror. Once again, I saw my “old” swollen face, which is the face that I previously thought was ‘normal.’ There was a red rash on my face, a large indentation and two blisters where my skin must have tried to swell under my CPAP mask when I was asleep. To test my Mast Cell Activation Disorder (McAD) diagnosis, I stepped on the scale to see if indeed the diagnosis was correct and…literally overnight, I gained about 6 pounds from my previous weight. Wow! Even in the past and prior to this diagnosis, I gained 9 pounds in 12 hours or less and I thought that was normal.
I’m still amazed that ALL of the seemingly unrelated symptoms came back. Even now, days later, when I stand up too fast, I got dizzy and when I am upright for too long, I become very tired. I now had burning tongue/mouth sores, bleeding gums, heart palpitations, nerve pain, muscle pain, fascia pain, eyeball pain, ear pain, joint pain, and in case I forgot to mention it – I had debilitating pain! Sadly, like many others a Ehlers-Danlos Syndrome (EDS), this is how I previously felt on a daily basis. It had became my normal throughout my entire life until I was properly diagnosed.
Since my diagnosis fo MCAD, my health issues have changed for the better these past 4 months because now I know why my issues escalate and what I can do about it to perhaps reduce the symptoms.
Here is a quick and hopefully simple explanation of how I understand MCAD for those who don’t quite understand it. Mast cells throughout the body contain histamine, heparin, cytokines and other “mediators.” Mast cells are commonly known for releasing these mediators in response to SPECIFICS allergens for retain people, such as strawberries, peanuts, mold, pollen, grass, and others. These are called IgE mediated AKA specific allergies and this is what the allergist would look for when performing a skin prick test. THis IS NOT Mast Cell Activation Disorder.
Instead, MCAD is when a person has a normal number of unstable mast cells which are easily triggered to release the mediators once a certainly threshold is reached. It’s like mast cells with ADHD – they overreact and can release mediators to just about any non-specific thing in the environment.
In other words, the resulting histamine and other mediatora that are constantly being released in the body wreaks havoc! If you want to know what MCAD can do to a person research the word “histamine” and you will find histamine allows blood vessels to be permeable and thus, this is why fluid leaks out of the vessels resulting in tissue swelling.
Think about this: Where are blood vessels located? All over, mostly INSIDE the body, right? Can we see them? Not usually. So if a blood vessel in the ____________ (insert internal body part name here such as stomach, colon, brain, spinal column, muscle, etc.) is leaky, can a person see that this internal body part is swollen? Probably not. Can a person feel it? Well I certainly can, but thats only because I now know that these things aren’t normally normal and since then hey typically happen at the same time that I have all of the other symptoms, it makes complete sense.
The day before this happened it was a beautiful spring day with wonderful fresh-air – pollen and all. I tried to stay inside but have you ever tried to stay away from the air?!? Probably my biggest mistake that day was forgetting to take one of four doses of the Gastrocrom. Live and learn!
Gastrocrom is a medication that “calms” down or stabilizes the mast cells. It’s like taking a bag of oranges and making the holes in the net smaller so the oranges don’t fall out so easily. Imagine the net is the mast cell and it is holding the oranges, which represent the histamines and other mediators.
When the histamines, for example, are released they circulate in the blood until they find a place where they can plug in and be utilized. These are called histamine receptors. There are 4 receptors in the body, but only two of them have known medications that block the action of the Histamines. THESE are called H1 and H2 receptor blockers. I take the H1 blocker called Allegra in a high dose and the H2 blocker Pepcid in a higher than normal dose under the guidance of my doctor.
Tomorrow will be my recovery day which includes relaxation, a chance to retighten the netting and decrease the swelling while also getting work done. The fridge and toilet are also close by so I think I should be good. Ah yes, this is life with the ups and downs of MCAD.
If this sounds like you or if you wish to understand more, please do research and find someone to help you. It is very important when finding someone to help you to remember this: MASTOCYTOSIS IS A CONDITION OF TOO MANY CELLS and it is not MCAD. Also there is not a lot of research that has been done on MCAD and many medical professionals may have never even heard of it.
My favorite resource is the book: Never Bet Against Occam by Lawrence Afrin. Recently I had the pleasure of meeting him at an EDS Wellness’s retreat “Wellapalooza”. Fortunately, I had the amazing opportunity to have relatively long conversations with both Dr. Afrin and Dr Maitland about MCAD in 2017, and was also able to hear their presentations on MCAD several times in person. This information presented greater understanding and direction and provided an opportunity to take back control of my health even when a spring day fills my life with fresh air. Find their presentations on EDS Awareness and EDS Wellness websites.
When you get diagnosed with strep throat, you don’t go home to the internet and hope and pray you can find someone else who has been through what you’ve been through. You don’t worry about explaining to your family why you’re different than others. You don’t hope your work understands why you might need some time off. Everyone knows what strep throat is. When someone tells you their doctor said they have it, you know they’re heading home with an antibiotic for their full 24-hour period away from others to keep from spreading germs. You let them know you can handle things at the office while they’re at home getting some extra rest, eating lots of popsicles, and waiting for the magic medicine to get rid of the tickle and the white spots in the back of your throat.
When you get diagnosed with Ehlers-Danlos Syndrome, though, people don’t nod and understand immediately. They wait for you to explain it to them, which can be frustrating when you aren’t even quite sure yourself what exactly the condition is or means for your future. Without fail, someone will ask you in those first few months, “is it fatal? Are you going to make it?” When you explain to them that the condition itself isn’t fatal and the few symptoms that can be usually can be prevented with proper diagnosis, they breathe a sigh of relief. They look at you and tell you something like, “Thank God it’s not cancer.”
I’m going to tell you something in this blog post I’ve told maybe five people on earth. There were moments in those first few months when I resented cancer patients. I resented them for having a disease people understood. I resented them for having a condition strangers would give money to research. I resented them for either going into remission or not making it when I knew I’d be struggling the rest of my life–a sort of chronic illness limbo where you never get better, but “hey, at least it’s not cancer.”
Let me also tell you something, THIS IS INSANE. Okay, but it’s also human. It’s human to wish other people could understand and have sympathy. It’s human to want people to feel an ounce of what you feel. It’s even human to become angry at other people for getting attention for their condition when you were almost screaming at your doctors for half your life before they finally believed something was wrong with you. You have to move past that. You have to be able to see the insanity and forgive yourself for those feelings. Tammy said at our event this weekend that self-forgiveness was an important step in being able to forgive others and she couldn’t be more right. If you can forgive yourself for resenting a cancer patient, you can forgive someone else for not understanding a condition whose name they heard the first time from your mouth only minutes before.
Here’s the other truth, though, you won’t really learn to live with this fully until you make room in your life for people living with it, too. Nobody else REALLY can get it and it isn’t fair for you to expect them to. I think of it this way, I work in an office. I work on a computer most of the day and with customers the other part of the day. If a carpenter asked me to empathize with him about his job, I couldn’t do it. I have no idea what it’s like to build a house. I can’t even begin to comprehend the nature of that profession–and it would be insane for him to think I could. I can talk to him. I can ask questions and do what I can to help him, but if he REALLY needs someone to help him through the hardest days in his job, he needs someone who has done it. He needs someone who DOES it. Having EDS isn’t all that different and it isn’t even that much more complicated.
Confession time: I SUCK at this. I get really angry a lot of the time at people for not understanding what’s happening to me. I can’t even tell you how often I’ve made snarky comments back at someone who has said something to me about using a handicap parking space when I’m “young and pretty and ‘fill in the blank with other not sick word’.” Now, I’m not saying people should do this to me, because they shouldn’t. I have a handicap placard from the state and parking in that space is my right. I need the space even more when I’m NOT using my cane or crutches because my body is working ten times harder without help–and I don’t need some judgmental person who doesn’t even know what EDS stands for telling me I’m not disabled enough to park there, BUT, I have an opportunity to prevent them from saying it to the next person. I have a chance to help another “young, pretty, whatever” disabled person not have to explain that she has a condition they haven’t heard of and walking hurts too much to park anywhere else. A few people mentioned this to me, so today, I worked on a small business card I can give people when this happens. I know I’m still going to be angry. I should be angry. It’s not right and it’s not fair. BUT, if I can be pleasant and simply hand them a card and tell them to have a nice day with a concise message on it explaining what EDS is and that not every disability looks like the symbol on the parking sign, I’ll probably leave that situation better than they do?
Now, when someone who didn’t understand said this to me, I got even angrier. This weekend, though, I was able to attend my first in-person support group with so many of the people I’ve met through this group. I know they’ve been there. I know they’ve seen doctors who didn’t see the condition. I know they’ve had people in their lives not understand. When one of them offered the suggestion, it seemed valid and reasonable because I knew they GOT it.
My EDS friends don’t replace my actual doctors. They can’t fix all my symptoms. They can take my call when I’m home from work and devastated because my body literally hurts so much I can’t sit at my own desk. They can tell me which doctor and where was the most help for them on a specific issue. They can laugh with me when I want to sit on the floor instead of a chair because my body likes it better–and when I say I want to sit there, they don’t ask ten more times. They can become my allies in a battle for answers and doctors and cures and empathy. They can become my refuge from the judgment of those who can never understand what it is to be in our situation–and help me not to judge them in return.
They will do that for you, too. I promise. If there is any ONE thing I have learned about EDS patients since my diagnosis, it is that their passion for helping others far exceeds any physical deficit they may have. Find them. Ask them. Make them your people. I promise you you’re not ACTUALLY alone no matter how much it feels that way.
Plus, some people who don’t have EDS will still love and support you no matter what–like my amazing office staff in their EDS shirts.
How I Work Full-Time With Ehlers-Danlos and Persistent Pain
Written by Tammy Kosbab, Edited by Jude Houston
This article was written for and is dedicated to everyone who has said to me, “How do you do it?”
A friend recently told me of a conversation she had with her husband shortly after her diagnosis in regard to her continued desire to work despite her pain. His reply to her, in the most loving way of course, was “You can either be in pain and not work, or be in pain and work.” If you think about this, it is so very true! Regardless of what we are doing, if a person has chronic pain, better now described as persistent pain, they will have pain no matter what they are doing. Yet the reality is it is not easy to work full time with persistent pain. I must say though due to my dedication (um, obsession!) with the work I do, I have found “where there’s a will there’s a way” is most certainly true for me. I try to maintain a positive outlook on my pain. Instead of a barrier preventing me from doing things I wish to do, my pain is an obstacle to overcome (sometimes a tremendous obstacle) which ultimately makes me stronger.
As a person who has always said things could be done when everyone else says it couldn’t be done, I will still try and envision an outcome that I realize may actually be unrealistic. This is because I believe a person MUST be able to envision a positive outcome in order for the task to be completed – I mean REALLY visualize an optimistic result, from the emotions it brings, along with the smell, taste, and everything which goes with successful completion of the task. Even if you don’t complete 100% of the task, you will still be closer to your goal of 100% than if you had never envisioned it at all. Don’t get me wrong, I have certainly had many days where I am extremely frustrated, feel defeated, wonder why I even try, and yes, I even cry at times. Sometimes those of us with persistent pain go to this dreary place. In the blog titled, When Fear of Missing Out is Reality by Stephanie Goettl from February 5, 2018 at www.edswi.org, Stephanie says, ”Acknowledge the frustration but DO NOT live there. If you pretend it doesn’t bother you, that usually makes it worse. Admitting you’re hurting over the unfairness of it is okay, but then, move on.”
My goal in this blog post is to provide helpful hints on how I am able to work full time despite pain and limitations in hopes others may utilize some of these suggestions idea. Some of the items are obvious, such as workplace ergonomics, while others are not-so-obvious suggestions many people may “know’ but don’t realize how helpful they may be! I hope I am able to help some of you with your desire to work by providing this information.
First and foremost, enjoy your job completely! I understand some of you may disagree with me for saying this and you may think enjoying a job isn’t even possible. I don’t believe YOU! There is something that each one of us enjoys and is passionate about. Once you know what that is, then ask yourself, “How could I earn an income doing what makes me happy?” If you’re not qualified to earn income in that particular role, maybe you could enroll a few classes to further your education. If taking classes has been difficult in the past, maybe the suggestions below may provide some direction to help you. The reason this is my number one idea is because if you’re fully engaged in your job, or anything really, this active engagement is a distraction to the pain. Find work you enjoy doing so much that you become so consumed that you’re mind has no room for pain. To be perfectly honest, this is one of the biggest reasons that I work as much as I do!
Have a GREAT boss. If you have any doubts of good rapport with a supervisor when you’re interviewing for a position, avoid taking this new position. Oftentimes it isn’t so much the job itself that causes struggling as this occurs much more often when you have an overbearing, micromanaging, or rigid boss. It most definitely makes simple things, like frequent position changes, flexible hours, or requests for accommodations much more challenging. There is not a job out there that should cause increased pain. The job market in the region I live is competitive enough to accommodate our next generation of workers. The next generation of workers have learned flexibility while they attended school, unlike my generation where we sat at one desk for nearly the entire day and there were little to no options for “flexibility.” This new generation of employees knows how important it is to engage in movement and mindfulness throughout daily living in order to be healthy and more productive. I am very blessed as my boss is amazing. She allows me to have flexible hours as long as I complete my work on time, which is an absolute necessity when a person has frequent doctor appointments for themselves as well as for his or her children who also have chronic conditions and are home from school more frequently than other children.
Supportive family, friends, and coworkers. I have a wonderful network of family, friends and coworkers. I believe they are supportive of me because they know I do my best every day. They are supportive because they know that I do what I am able, when I am able, and that I am motivated to do everything I can on a daily basis to feel well because I am driven by the need to help others as I do in my career. Family and friends also know that I value my integrity and always try to do the right thing. My lack of a mouth barrier may sometimes make me look like the bad guy, such as when I tactfully – or not-so-tactfully – tell someone they need to put on deodorant. At the same time, people know they never have to wonder what I am thinking. People are aware if I have something to say, I will say it and I feel like people actually really appreciate that I can be trusted to tell them the truth, even if it isn’t what they want to hear.
Affirmations book. Almost every day prior to work, I typically start my day reading something which inspires me the rest of my day. A favorite book of mine is called The Language of Letting Go by Melody Beattie. This meditation book is organized by date so each date has an inspirational message. I prefer to simply use my intuition and open to whichever page I feel guided to TRUSTING I will open to the page holding the message I need to hear this particular day. This is one reason I ended up writing this blog today. I just happened to open to June 19th and the title was Making Life Easier. The overall message is that life does not have to be hard! The author states, “Our value and worth are not determined by how hard we struggle.” Throughout this helpful book, the author explains the need to let go of the belief that life has to be hard, to let things flow and trust that they will work out. Trust, Acceptance, and Faith!
Medication. For those who have medical conditions, it is important to not miss the medications that are necessary and helpful to manage their conditions. For me, I set timers for reminders to take my medication throughout my workday. Most times I am so engaged in my work I would otherwise forget to take it and when this occurs, I suffer a big crash and then I am not able to work productively. For those who have Ehlers Danlos Syndromes (EDS), oftentimes they have “allergies” go along with it. Newer research is finding that these allergies are caused by non-specific allergens due to overactive mast cells releasing histamines and other mediators throughout the day as a sort of hyper-response. Is it a coincidence that many of us get tired after eating? Is it a coincidence that we experience weakness and fatigue when we get hot? Mast cells can be triggered by just about anything, similar to a full bag of oranges where the oranges are about the same size as the holes in the mesh bag – any little movement would trigger the oranges, as compared to histamines in the mast cells, to fall out! This overactive mast cell condition is called Mast Cell Activation Disorder (MCAD), and newer research is finding that treating these overactive mast cells with mast cell stabilizers like Gastrocrom, as well as taking antihistamines that target BOTH the H1 and H2 receptors on a regular basis has helped many with pain, brain fog, migraines, IBS, and other common symptoms that persons with EDS experience! For more information, please see the other resources about MCAD at www.edswi.org. On a different note, I try not to switch medications often. I take the least amount I need to take for my condition(s) but I take them as regularly as I can. The reason that I feel this is so important is because many people with EDS have medication metabolism issues and oftentimes one medication may make a different one work better or worse. This is called a drug-drug interaction. Therefore, regularity is very important to remain stable.
Hand sanitizer and antimicrobial wipes. We must stay healthy and not get sick. If you are in a workplace outside of your home, I thoroughly recommend these products to avoid illness but if you dislike these products, that’s fine. I know they can be controversial but so far they have helped me even within my home workplace.
Standing Desk. I appreciate my standing desk tremendously because it offers options. It allows me ability to work while standing as well as when sitting. I also have the option of how high or low I prefer the desk to be. If I need to rest one foot on my chair while I am working, I am able to move the desk to a different height. Also, when I am standing and waiting for a page to load, I have an ability to do some squats and/or exercises for strength or to get the blood moving. I may also do a little bit of stretching. Be careful if you’re doing these things though because I have found that too frequent stretching causes additional increased pain for me later on in the day or evening.
Monitor riser. The riser provides options about how high the monitor is so I am able to decide which position is best for my neck. At this time, I am using a board game as the riser for my laptop, which is on top of the standing desk. You could also use a book or two to lift your monitor to the appropriate height. Typically, your monitor should be a full arm length away from your body (18-20”) and the top of the screen is at or below eye level so the user can read it without bending their head or neck down/back. If multiple monitors are used, the position of the primary monitor is directly in front of the user and the other monitors are directly beside it. If time is split evenly between monitors, they are next to each other within a comfortable viewing angle with minimal head movement. A laptop is typically impossible to utilize ergonomically as your eye level is not at the top of the screen unless one operates a wireless keyboard and the laptop is lifted to the appropriate height.
Wireless, ergonomic keyboard. I have a Logitech K350 2.4Ghz Wireless Keyboard. This wireless ergonomic keyboard allows me to place the keyboard anywhere I need to so my hands, wrists, and neck are in a neutral straight alignment with my elbows flexed to 90 degrees and held close to my body. It is imperative everyone avoids straining joints or causing overuse injuries which could lead to tendonitis or other additional problems.
Mice. It is important to have a good mouse and to also have another mouse available for use as a backup when the good mouse becomes too repetitive and causes increased pain. I have the Logitech M570 Mouse. It has a tracking ball which I can navigate the screen by using my thumb. There are days though the rolling ball hurts my thumb, and then on those days I will secure tape to my thumb to avoid additional pain. It appears very helpful for me to have the option of using a regular mouse or this one with the rolling ball. The mouse or track ball should be located right next to the keyboard so it can be operated without reaching. Frequent position changes are not only important but necessary when dealing with EDS and/or persistent pain.
Foot stool. I keep a foot stool under my desk so I am able to shift positions more often. I could place both feet on it if I am sitting and when standing, I can put one foot on it and if I wanted to, I could even sit on it if I needed to. The point is, the foot stool provides options which allow me greater ability to continue working.
Proper lighting. Avoid glare from windows and lights. LED and fluorescent lights appear to bother my eyes causing headaches. I have two small lamps on my desk with 40 and 60 watt incandescent bulbs. This provides me the option of adjusting the lights in my space to avoid headaches. I also have a few big windows in my home office and the window treatments allow me to have as much or as little natural light in my space as I want.
Talk to text software. On my computer I have Dragon Software which allows me ability to quickly and easily type up long documents without the strain on my hands from typing as Dragon will type what I speak into the computer microphone. Luckily, I was able to get this software at a reduced price through my college. Other times when I need to write up a long document, I will use my email or Notes app on my iPhone and use the talk-to-text feature on there and then email the text to myself. For further workplace ergonomic information: https://www.osha.gov/SLTC/etools/computerworkstations/checklist_evaluation.html
Personal Bracing Assists:
Clavicle Brace. The clavicle brace is a soft white brace prescribed by my physical therapist years ago which gently holds my shoulders back. While it appears to look like a vest, there is no material in the front. Therapists typically call this is a “Figure 8 Clavicle Brace.” This brace allows my upper extremity and upper back muscles the option to rest and relax while I am working. I don’t use this brace or any of my braces every day, but my braces provide OPTIONS for relief which I feel are absolutely necessary if you have neck, back or shoulder pain and work at a computer.
Neck Brace. This gives my neck muscles a rest on some days but again, while I don’t use it very often, some days I must and I have the option of wearing it for relief. Tape, ring splints, Gold’s Gym glove. I have many, many rolls of different kinds of body tape: white sports tape, Kinesio tape, and waterproof, spongy skin-colored sports tape. I use it to tape up the joints of my fingers and my thumb as I use my hands to type all day and it appears to help me reduce additional pain. Many people use Kinesio tape on their back to help remind them to maintain a good posture. Other people such as myself, use it to stimulate the sensory nerves on the skin which essentially “takes away” or distracts the nerves from sensing pain. It is not 100% fool proof but anything which could distract heightened pain nerves is a positive in my book!
Personal uplifting workplace sensory assists:
Essential Oils. For Christmas, my daughter Kailee presented me with a desktop essential oil diffuser. Some days I need to be reminded to breathe and the diffuser stimulates the senses and is a nice distraction to the ho-hum of daily activities. In fact, research indicates if we participate in deep breathing (6 repetitions, 6 times per day), this will encourage greater oxygen to our oxygen depleted nerves to promote decreased nerve pain. You could set reminders for this too throughout your day. With my newly acquired diffuser, I am reminded how the sense of smell is so very powerful. For example, like many others, I STILL recall the smell of my Grandmother’s house from back when I was a child. At the time I was about 5 years old, I really did not like the smell of her home at all. Yet now as my grandmother is no longer with us on Earth, when I get a whiff of this very same air freshener I previously disliked, I immediately have positive emotions and memories about being at her house and eating bacon, eggs, and biscuits and gravy at her 1970’s style dark brown wood kitchen table. I am also reminded of her little orange sports car, and the time my mom and I were brushing our teeth at Grandma’s bathroom sink and I remember how my mom was watching me in the mirror and when I spit the toothpaste into the sink, mom spit onto the floor. We laughed and laughed and laughed and even now it makes me happy and brings me positive feelings. Our sense of smell is strong enough to cause these positive associations made in an instant – with zero effort or control – from a single whiff of a particular scent. In fact, the sense of smell is very strongly correlated to feelings and emotions. Therefore, if you have a scent that has positive associations for you, it can actually help you a little with pain by triggering “feel good” hormones and memory associations. I also believe we should be careful utilizing fragrances or essential oils at times of high pain or a bad day because we may risk creating a negative association with the scent.
Music. Another pain diversion is music which I like to include during my workday. I find music is not only quite relaxing, it most definitely provides further distraction from the pain through the auditory sense of hearing!
Photos. Our sense of sight provides additional distraction and helps us to focus on the positive. On the side of my desk I have photos of family members, friends, and persons with EDS who have passed. This collections of photos are here as motivation to keep going and reminding me of my life’s purpose – which is to help others who are also suffering so they may find answers and solutions to live their life to the fullest despite pain and limitations.
Tokens. Within my eyesight at my desk, I also have notes from friends and other little uplifting items which automatically recreate positive feelings. Again, this helps reproduce positive emotions and associations throughout the day with merely a brief view of the tokens. My favorite item is a yellow coffee cup I painted with my kids at a local painting/craft shop about five years ago. I remember the day well! I went with my children and what fun we had just hanging out, talking, laughing while we were painting. As my late mother LOVED the color yellow because it reminded her of sunshine and smiley faces, I just had to choose yellow. I also painted my children’s names on the cup because…well, they are my world!
Incorporate building strength and endurance because… why not?
Under Desk Treadmill. Recently, I purchased a treadmill that goes under my desk and I LOVE it. It is the BEST $425 I have ever spent in my entire life and this included shipping and delivery straight to my house! (Unfortunately, it looks like the price has gone up to $459 now but it is worth every penny.) I have walked anywhere from two to four miles every day since it was set up in my workplace at home. The circulation and other health benefits are endless. Even if a person could only walk 1/4 of a mile, this is better than no walking at all. I do realize while this is not an option for everybody such as those who have difficulty walking, those who are able to my find it is a wonderful tool.
Ankle weights. At times, I wear ankle weights on my wrists when I am feeling stronger because hey, it can’t hurt to build some more muscle! Please be aware, this is for a limited time though because I too need to avoid overuse injuries. 3 -5- 10 pound dumbbells. The dumbbells are helpful to have at my desk so if I need a break and am having a good day with increased strength, I am then able to do a few bicep, tricep, or deltoid exercises. Again, we must avoid overuse injuries though so please listen to your body.
Here is a photo of my at home workstation. I work here up to 70 hours per week between my two jobs. I hope that these tips and hints are even slightly beneficial to you. In the comment section, please tell me what other tips and tricks you have that allow you to work or attend school on a regular basis.
PATIENTS, have you ever gone to a medical appointment and wondered, “Where do I even start? What IS important and what’s NOT important? I hope they believe me.”
MEDICAL PROFESSIONALS, do you have patients who have complex symptoms and wonder, “Where do I start? How do I best help this patient? I don’t have enough time.”
At this first educational event in a series of four for 2018 hosted by EDS Wisconsin, patients and medical professionals will be given tools and tips to help get through these appointments with confidence and ease. Join Linda Stapleford Bluestein, M.D., and Tammy Kosbab, President and Founder of EDS Wisconsin, Inc for this empowering event! You don’t want to miss this! What do you have to lose anyways, besides the anxiety?
FREE TO ATTEND
Raffles and Door Prizes
Medical Professionals and Patients – All are welcome
Auditorium at Aspirus Family Medicine, 425 Wind Ridge Drive in Wausau
Saturday, March 24, 1 – 3 pm
See you there!
Please share and show friends who may be interested
Many thanks to our current and past Sponsors & Donors because we couldn’t do this without their generous support: Wisconsin Integrative Pain Specialists, Aspirus Family Medicine, The University of Wisconsin School of Medicine and Public Health, The Caring Tree Children’s Counseling Center, Fishing Hot Spots, Chrysalis Massage, Priority Physical Therapy, EDS Awareness, EDS Wellness, Soleil Beads, EDS Network CARES, and Silver Ring Splints.
We have had over 800 participants since we introduced the program!
*Participants do not need to be Physicians.
The Ehlers-Danlos Syndromes Physician CME Education Programis the first online Ehlers-Danlos Syndromes course accredited to provide continuing education credits. This free program will cover the fundamental principles for the diagnosis, classification, and treatment of Ehlers-Danlos Syndromes (EDS) and related disorders as well as associated conditions.
Many medical disciplines encounter patients with Ehlers-Danlos Syndromes and related disorders and misunderstandings regarding these conditions are still prevalent despite many recent advances in the field.
The focus of this program is on a basic understanding of these complex, genetic disorders that are often present with a diversity of symptoms which make diagnosis challenging. Also, the severity of EDS and related disorders varies tremendously from mild to severely disabling symptoms. Recognition is critical as the morbidity and mortality can be very significant without proper treatment. This EDS CME program includes information for the care of patients from infancy through adulthood.
Scope of this program
This course is multidisciplinary and will eventually include learning modules presented by experts in the following medical disciplines: Genetics, Radiology, Neurology, Dermatology, Cardiology, Dentistry, Gastroenterology, Neurology, Pain Management, Anesthesiology, Physical Medicine and Rehabilitation, Physical Therapy, Pediatrics, Psychology, and Orthopedics.
The EDS CME Physician Education Program is designed to provide physicians with a general understanding of Ehlers-Danlos Syndromes and related disorders as well as associated conditions, their diversity, and the latest in diagnosing and treatment options.
Objectives for participants
Identify the Multisystemic signs and symptoms of connective tissue disorders
Increase your knowledge of Ehlers-Danlos Syndromes
Recognize conditions associated with EDS
Become familiar with the test & treatment options recommended to improve patient function & outcomes
Be able to direct patients to knowledgeable specialists
Assist patients connecting with additional resources
EDS Wisconsin’s Mission is to provide support and resources to Wisconsin’s patients and Medical Professionals about Ehlers-Danlos Syndromes and related conditions via education and research. Fulfilling our Mission, we have two very exciting, and important, events coming to Wisconsin very soon! However, for these events to be a success, we need to reach more people; and that is where your help is critical.
We Need Your Help
We are asking for help from anyone able, to please print and distribute the following flyers freely; there are still many people beyond our reach in need of this information. Thank you, in advance, for helping us fulfill our Mission, but also for serving your local community. For, if we can reach just one more person, together, we could save a life.
For additional volunteer opportunities, please see our Volunteer Page.