Hi… It’s me Kayla

Hi, it’s me, Kayla. I’ve been sitting on writing this post for a really long time. I wasn’t sure if I wanted to share it originally but I guess I finally feel ready. This time 2 years ago started a very long and tumultuous journey that lead to receiving many medical diagnoses. Over the last year and a half I’ve been diagnosed with more than 5 diseases along with some other conditions that often happen alongside them.

I don’t even know where to begin in trying to explain what this process has been like. I’ve spent the last 20+ years experiencing a body that never worked the way it should’ve. Deep down I’ve always known that I was different and things were very wrong. It led me into a deep depression as a child along with suffering severe anxiety. I was constantly fatigued, in pain, and at points felt like my body was completely shutting down and dying. 

I started writing about how I was feeling two years ago, after what I’ll call a “soft diagnosis” from a dermatologist. It took nearly 6 months for a specialist to confirm my diagnosis. Reading back through what I wrote during this grieving process is difficult because I relive the dark array of emotions. In some ways it gave me mental relief, and in other ways it left me facing my pain head on and full of confusion. I had no idea how many more diagnoses would come my way and how the grief would grow to be so heavy.

In these last 2 years I have had some of the most horrific, painful and invasive tests. I’ve seen more doctors than I could have ever possibly imagined. I’m lucky to have a few great doctors, but in all honesty, after my diagnoses I’ve felt ignored or misunderstood completely. I’m on waitlists for new specialists and trying to go to new hospitals. The process of dealing with doctors, hospitals and insurance companies is also long and painful. 

My first diagnosis started with a very rare neuro-vascular disease called Erythromelalgia (also known as EM). This disease has been ruining my life for as long as I can remember but during my 2nd year at University my symptoms worsened and several years after that it was completely disabling. It affects my feet, hands, face, and ears. The pain this comes with varies from uncomfortable to completely excruciating and unbearable. My body is triggered by warmth, physical activity and stress. I’m not able to exercise, it hurts to wear socks, shoes, or have my feet touch the floor, my bed, the couch etc. I can’t sleep on my side because my ears begin to feel such intense pain. I’m unable to wear over the ear headphones for that same reason. I hate the feeling of gloves because I immediately start to overheat. The list of triggers is practically endless.

Being forced to exercise growing up can easily be considered some of my most traumatic memories. It felt like I was burning alive. I could feel my pulse through my brain. The best way to describe how my body feels when I exercise is like my brain is swelling, pulsing and bursting as my scalp and skull are simultaneously shrinking. When I would have to run I’d shake my head back and forth as hard as I could. It was the only way to distract myself from feeling like my brain could explode at any minute. I used to blame my asthma as the reason I needed to stop because at least my gym teachers or coaches would understand. Adults never seemed to believe me when I said I felt like I was dying. I always thought athletes were super heroes. I couldn’t understand how they would willingly endure such extreme pain on the daily. It took me 25 years to understand that they don’t feel the way I do. 

I remember being 6 years old and forced to run outside for gym class and telling my classmates by the water fountain after that I felt like I was on fire. My extremely red face was never a concern since my skin was so fair. They didn’t understand I meant it when I said I felt like I was on fire, they would say “I know I’m hot too”. I wasn’t warm or hot like the other students. I was really burning. Accurately, this disease has been nicknamed “Man on Fire” syndrome and “Burning Man” disease.

What is most interesting about Erythromelalgia is it’s often paired with Raynaud’s. I have virtually no temperature regulation (which is also thanks to other nervous system issues). I either lack blood flow and am freezing OR I’m extremely uncomfortable and in pain from the swelling and heat throughout my body. My feet are the most severely affected. My skin is damaged from lack of blood flow to excessive blood flow. It causes chilblains, cuts my skin open, and to say the least, it really, really fucking hurts. When I start to walk it doesn’t usually take more than 15 or 20 minutes to feel like I’m walking directly on acid. I used to describe this to doctors who really just thought I was insane, unfit, or that it was a minor issue that didn’t really affect me. Growing up I gave up on finding solutions after being constantly told everything was normal, no matter how severe. I believe we call that medical gaslighting today lol. Flare ups come and go with EM but I haven’t experienced a single day without one in the last 10 years. My feet and hands are visibly swollen, red and with veins popping out more often than not. My face underneath my makeup can turn to be so brightly red. Sleeping is extremely uncomfortable, I have to sleep with my feet and hands exposed from the covers because I heat up throughout the night. On sleepless nights when my body temperature is all over the place with some parts of my body freezing and other parts on fire, I think of young Kayla. How badly she suffered trying to regulate her body temperature as she woke up in the middle of the night. How badly she hurt and felt like she was dying in gym class. How it felt like her veins were bursting in her feet. How she was made fun of for being overweight when she was completely trapped in her own body. And lastly how amazing it is that she continued through life each and every day silently dealing with her own pain.

I’ve been insulted by doctors who don’t know what the disease is or mistake it for Erythema, a condition where your body is superficially red but you don’t experience the excruciating pain. In the last year I’ve had two doctors look me in the eyes and say “it’s just redness”. Their lack of knowledge and lack of a bedside manner is soul destroying. So clearly ignorant and incapable of hearing the pain I endure on the daily because they can’t imagine that I have a condition they are not familiar with. I’ve watched doctors google my disease in front of me. Some astonished, and some who go through my medical chart and simply apologize. As of now, treatments for Erythromelalgia are unlikely to work and the ones I’ve tried either haven’t or have had adverse effects on me.

Upon my diagnosis with Erythromelalgia my neurologist realized I also suffer from Small Fiber Neuropathy. This disease contributes to my pain, particularly in my feet, but also affects many other systems. “Symptoms of sensory small fiber neuropathy include numbness, hypersensitivity, and spontaneous painful or annoying sensations called paresthesias. The latter can present as tingling, burning, freezing, stinging, stabbing, itching, squeezing, tearing, buzzing, aching, or electric sensations that fluctuate in severity. The skin can be hypersensitive to pressure or touch, and innocuous stimuli can provoke unpleasant sensations, called dysesthesias; clothes can feel like sandpaper against the skin, and the pressure from wearing shoes or socks can cause pain and limit walking. These sensations can occur anywhere in the body, including the feet, arms, legs, torso, scalp, face, or even the mouth. Symptoms of autonomic small fiber neuropathy include abnormal sweating or temperature regulation, lightheadedness or fainting when standing up from hypotension or tachycardia, gastroparesis with bloating and constipation or diarrhea, incomplete bladder emptying or difficulty initiating a stream, dryness and thinning of the skin, hair loss in the legs, and ridged or brittle nails.” When I read this list of symptoms I yet again think back to young Kayla. The extreme pain I experienced as a kid that they told me was just growing pains. The excruciating stomach aches that sent me to the nurse every single day in elementary school, or would eventually land me in the ER or at multiple doctor appointments getting sonograms. It took until 2022 for a gastroenterologist to take me seriously and that man changed my life. He also put me through the most traumatic tests I’ve ever experienced (lol) but he listened to me and told me that the 5+ other gastros I had been to had neglected me and my symptoms. No doctor should have ever told me my symptoms were normal. Shout out to the one gastro who told me I was fine and needed to hydrate more, mansplained and circled what my esophagus, small intestine and stomach were as if it was my first time learning about my body lol.

Over the last 10 years I created an identity out of being lazy and never moving. It was the only way to let my body feel peace without being questioned. I think it began in High School when I was constantly injured (thank you Ehler-Danlos Syndrome) and by the time I moved to London, and had a chance to forget all of the traumas I endured in school growing up. I was able to be who I needed to. Everyone knew right off the bat that I wasn’t an active person and I didn’t have to argue why because I made it who I was. It has been the only way I’ve found to cope with this so people stop asking me to do things that hurt me. I never wanted to be this person. Every year I’d convince myself that this was the year I’d take short walks again. Everyone would tell me “start slow, just take up walking and do what you can” and every year I tried and quit. My body was screaming for me to stop moving, my pain was unbearable. My lazy identity was only further strengthened by the things that EM so easily affects. It hurts my hands to wash dishes, use a vacuum, carry boxes and hold grocery bags. The list of every day tasks and actions that immediately trigger excessive blood flow are endless. They make it painful and difficult to use my hands. I am however so fucking thankful that holding a makeup brush is not one of these many triggers. 

Aside from the pain, the fatigue was constant. I recently went to a new neurologist who ran multiple other tests and diagnosed me with POTS. Postural orthostatic tachycardia syndrome (POTS) is a condition that causes a number of symptoms when you transition from lying down to standing up, such as a fast heart rate, dizziness and fatigue. Fainting has been a long time friend of mine and now I finally have an understanding of why it happens. In all honesty, this condition is probably the one that affects me the least because I know when I need to sit down and let my body chill. 

This same doctor recently diagnosed me with an autoimmune disease I didn’t see coming. On my recent trip to London I got all of my last test results from a few weeks prior and was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). It’s a neurological disorder that involves progressive weakness and reduced senses in the arms and legs, impaired balance and loss of reflexes. It is caused by damage to the fat-based protective covering on nerves, the myelin sheath, and it affects the peripheral nervous system. In the next few weeks I start monthly IV infusion treatments. Knowing that 1 in 3 people who don’t get treatments for this end up in a wheelchair is very scary, but I am so grateful knowing I’m starting a potential treatment and not too far along in the progression of the disease. 

These days I’ve learned that I need to take it easy. The more I walk, the more pain and flare ups I have. The longer I have shoes on, the worse it will feel. I dread Winter as the extreme cold actually triggers heat flare ups, and the heat in apartments do the same. I of course dread summer for the most obvious of reasons. It can be hard to separate which symptoms are caused by which disease, but at this point it doesn’t even matter. I am thankful for the answers I’ve gotten over the last few years. Sometimes these diagnoses make it harder to deal with the physical pain when I feel bad because I can’t convince myself it’s all in my head anymore, but at the same time learning to live a stagnant life has allowed me to control the severity of it. 

I find myself really angry at the doctors I had as a kid. The ones who tried to put me on a diet for my whole life, wrote in their medical notes that I was obese dozens of times, and let me think that all of my pains and chronic conditions were normal. I’m angry at the people who bullied me for being overweight when I already hated myself so deeply. Sometimes I’m even angry at myself for not understanding how sick I was. It took until I was completely disabled with bleeding feet to comprehend that something was so insanely wrong with my body. I of course can’t blame myself, but these feelings come in waves as I process such grief. 

I’m also very grateful. For the roommates who checked in on me for the two weeks I didn’t leave my room after my Erythromelalgia diagnosis. I’m grateful for the friends ranging from California to London who ordered me dinners, called me and listened to me complain. I’m grateful for the friends in NYC who let me cry on them, called me after every test, and never once invited me to their plans to go hiking (thank fuck). I’m the most grateful to my mom who has listened to me complain for my entire life. She has been with me every step of the way (even with all of her own medical problems) and has always told me if you don’t think your doctor is doing enough to go to a new doctor. I remember having a conversation with my mom about 4 years ago trying to explain to her that I knew I was different. I explained that everyone talks about serotonin and endorphins from exercise, and it makes me feel like I’m going to die. She never thought I was crazy (in this regard at least lol) and I am so appreciative. 

Living with EM, CIDP, Ehler-Danlos, Small Fiber Neuropathy and POTS has been something I’ve been doing my whole life and won’t stop any time soon. If you know anyone with Erythromelalgia specifically, please put me in touch with them as I am desperate for help and am on a long waitlist for doctors who actually know what to do with the diagnosis. 

I love you all very dearly. Thank you for always being here for me and taking the time to read this!