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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:

  1. 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.
  2. 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.
  3. 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.

By Tammy Kosbab, Edited by Jude Houston

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.

I was 26 the first time someone explained to me what FOMO was. I assumed it was a curse word. It turns out, though, it was the “fear of missing out,” this concept that you always worry that any time you aren’t “doing something,” you are missing out on “doing THE thing.” For a person with chronic illness, and especially a young person with chronic illness, FOMO almost seems like an acronym that should make our list of diagnoses…

  • Ehlers-Danlos Syndrome
  • Chronic Pain Syndrome
  • Myofascial Pain Syndrome
  • Fibromyalgia
  • Mast Cell Activation Disorder
  • Fear of Missing Out

I have always been the person who wanted to do everything. I saw my life as an opportunity to achieve everything. I made a to-do list of accomplishments and started checking them off. When I was 25, my health started declining. I got my EDS diagnosis and things started making sense. I thought I would suddenly be better. These last two years, though, my body has paid the price for years of not understanding what was “wrong.” I’ve paid the ultimate price for years of running on knees and ankles that dislocated. I’ve paid for the pain my gym teachers told me was “normal” and to “quit whining.”

Now, I’m 27 and my body is in pain a lot of the time. I see doctors frequently looking for a solution. BUT, I haven’t learned that sometimes it’s necessary to rest. I’m not always good at saying no. I’m not always good at staying home when I want to be out doing something else. If I had a dollar for every time I pushed my body harder than made sense, I’d probably never have to worry about bills for the rest of my days.

Here are the ways I’ve tried to cope with those days when FOMO isn’t just a fear, but a reality:

  • I made friends who understood. I used the internet and found support groups. I reached out through EDS spaces and realized I’m not the only young person feeling this way. I attended the EDS conference in September. There, I made a friend who lives in New York. BUT, she still sends me a text after every time she has  a doctor’s appointment. I still message her to check in. When I’m crying on the couch because I want to be out doing something with friends, I message her and realize she understands completely and without judgments. I’m so thankful for the friends in my life who don’t deal with chronic illness, but these connections who get it, they are absolutely CRITICAL on these days.
  • 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.
  • Find something fun and safe to do at home. We enjoy board games and video games as a family as well as play time with our puppy. Individually, I love coloring and painting artwork on my fingernails. Just because you’re at home doesn’t mean you can’t have fun.[contact-form-7 404 "Not Found"]
  • Find ways to enjoy the safe time. I remember looking sadly at a trampoline park with friends. I desperately wanted to jump on those springs more than I wanted anything in the world. I realized quickly, though, that it would take two seconds for me to get hurt there with my friends. Instead, my friends and I find things to do that are completely safe for me. When they want to do things I can’t do, I cope with that reality by finding things I enjoy in that off-time. My fiance and I spend time together and then I can meet up with them for a meal later. You don’t have to miss everything just because you have to miss some things.
  • Don’t push yourself for the sake of others. This is just not worth it. If you want to talk about this, I’ve got about 457 stories to tell you. But, it’s pretty self-explanatory. Take care of yourself. It’s worth it. I promise.
  • Find a good mental health specialist. I can’t tell you enough the value of therapy. It doesn’t make you crazy. Any person who pretends they could deal with endless chronic pain and a condition with no cure like EDS without feeling like they need someone to talk, frankly, is full of it (and you know what it is). I have had so many wonderful therapists help me face my realities. They are absolutely invaluable when it comes to facing this reality. You don’t have to be alone in this.

The FOMO is real. When you have a condition like EDS, sometimes missing out is for your own good. How you face that reality is up to you. You just don’t have to do it alone.

Remember, we aren’t a substitute for your doctors or mental health specialists. ALWAYS talk to them if you are struggling, please.

There are fun, safe things to do at home–like nail art!

CHANGE THEIR WORLD. CHANGE YOURS. THIS CHANGES EVERYTHING.