New episode! Episode FOUR available now. Links below:
I am so excited to announce the upcoming launch of a show with my dear friend Amber, called The Invisible Diaries! The show will be shedding light on invisible illnesses. We are going to interview guests as well.
If you are interested in being on our show, please emails us at firstname.lastname@example.org and introduce yourself.
Stay tuned and follow us on social media for updates on our official launch!
Published in the April 2019 The Beachside Resident
Hypermobility is very common with EDS. There are many, many other health issues that fall under the umbrella due to this collagen defect. Imagine your joints are like rubber, frequently popping out of place from even just a hug or rolling over in bed. Sometimes these joints stay out of place or wear down. It is a painful disease to many.
This does not only affect joints but can also affect your organs.
We are all different and we call ourselves Zebras because in the medical field, doctors and nurses are trained that when they hear hooves to look for horses not zebras. This mentality has caused me to go undiagnosed and medically neglected for my entire life, up until I had genetic testing last year. Despite my heart issues and frequent ER visits, being young and seemingly healthy has had me labeled as drug seeking or having anxiety attacks.
The reason why is because EDS and dysautonomia (dysfunction of the autonomic nervous system) does not show up on routine blood work. I have never done drugs, besides cannabis, and even after open heart surgery and a broken sternum I did not even finish my pain meds prescription. I have been treated as if I were an IV drug user, because in my area that is the only reason someone of my age would have this extent of damage to their heart. I am so incredibly thankful to now be taken seriously with a diagnosis, but it is bittersweet because this syndrome is progressive and for me, my heart is always at risk. In my recent echo, I have developed a dilated aortic root. This is beyond scary to me because EDS, especially cvEDS comes with aneurisms. Dealing with this type of diagnosis as well as chronic pain and illness is mentally exhausting.
I am passionate about awareness is because it took so fucking long to be heard. I suffered for so long not taking proper care of myself and not knowing the correct treatments. I have been called a hypochondriac by exes and have hidden behind a mask for years. I want others to know they are not alone and I want medical professionals to see us.
When bad days turn into weeks. When your strengths are suffocating. When your dreams drift too far. When nothing seems fair. When tears turn into fears. When you get lost. When you feel defeated. When you stop feeling. You aren’t alone.
The grey area is a state that doesn’t live on one side or the other. It is nomadic and intermediate; the blurry line.
The grey area is where many undiagnosed, dismissed and neglected health issues live. For some, they got tossed back and forth between doctors and never really helped by any, or are just getting by with the small crumbs of progress over a span of time.
The grey area is also the wait. It’s waiting for the inevitable, irreversible and impending progression of a particular diagnosis. It’s knowing a risks but having no control or peace of mind. Sometimes you float in between acceptance and anger.
The grey area is where the people who don’t fit in the one-size-fits-all category call home.
Many of us only know the grey area, constantly hoping someone will understand us or send out a rescue team to bring us in.
Awareness is for us, in the grey area, looking to fit in somewhere, to make sense, to have answers, to not be neglected or alone.
Share your fire until it lights up the sky, defining a new meaning and growing into a new path where those who were once lost can be found.
The Kübler-Ross model of the five stages of grief was pioneered by a Swiss-American woman named Elisabeth Kübler-Ross. Her book On Death and Dying elaborates more on this theory and her studies. Her model of the five stages were my inspiration but I put a twist and my own touch on the stages in the perspective of living with a chronic illness.
For chronic illnesses, this model is not linear. It is a circle that loops back around, over and over. Identifying these feelings helps to not feel alone and to make sense of what we are feeling, that it is actually normal. If you don’t have a chronic illness, maybe you want to understand what goes on in the mind of someone who does, and thank you for that!
*Photo by Winship Photography
Shock and Denial
One moment you are thumbing through what to wear in your closet, the sun is shining through the window and the entire day is ahead of you. The next, you are rolling out of bed in agonizing pain after waking up at least six times throughout the night; this is your norm. Perhaps you have lived with chronic illnesses for most of your life and it has always been your norm, only you have been dismissed by doctors and left without answers.
When you finally get a name or answer to your health issues that were ignored for decades, while you were labeled as a hypochondriac by people you thought cared about you, it can be a shock.
There are times when I go into my doctors office and beg for another set of labs. “Please, test me for metals and maybe my vitamin levels again. I know my thyroid is perfect and my electrolytes are beautiful but I can’t accept that I am stuck with this pain forever. Maybe, just maybe there is something else,” I said to my doctor last week. Usually, I get the results and they are perfect or maybe a few small flags but nothing to be causing my body to feel like I was thrown down a flight of stairs just before getting trampled on by a stampede, when all I did was sit at my desk or get ready for bed. That’s denial, my friend. It’s like you finally get that answer you have searched for and you want to light it on fire and ask for a redo.
Denial is also working full time when your body should not work at all, but you have bills to pay. So, you work all day until you literally collapse in bed, too tired to shower, muscles spasming everywhere and every atom of your existence is in agony.
Denial is smiling and listening to your friend’s conversation while your vision fades and your hands and lip go numb but you don’t want to say anything because it’s normal for you and you want to be normal for them.
There are moments you are doing something mundane, like brushing your teeth, and you just start sobbing.
You question everything, combing through your past and present to investigate where you went wrong or what if you had taken better care of yourself when you were younger.
Why, though? Why, when you are such a fighter and you were always so positive and you did everything by the book and still, here you are, suffering. It isn’t fucking fair.
The cherry on the cake is when people tell you that maybe exercise would help but when you exercise, your heart rate skyrockets and you get chest pain and bronchial spasms and feel like passing out. Or, “you need to heal your childhood traumas” gets thrown at you for the 5th time but you have done nothing but read inspiring self-help books, healing and even see a therapist. “Maybe if you changed your diet or took this supplement…” Sure, nutrition is important but what haven’t we tried at this point? Even after two solid years of eating clean, cutting out preservatives, processed foods, dyes, additives and fillers and eating a strict anti-inflammatory diet, juicing, supplements, etc. the changes are minimal.
Yes, there is some relief and my migraines are minimized but that doesn’t put a fucking dent into this mountain of health issues. I have tried all the protocols, diets and supplements and will probably continue trying new ones throughout this cycle of grieving. Maybe Karen could help her arthritis if she stopped drinking her diet coke and did yoga, or Steve could lighten up on the drinking and late-night fast food binge, but we are not all Karens and Steves.
There are moments when I am pissed. I am furious. I am exhausted and in pain, and I am so very angry. But these moments pass and I continue to fight and be positive. Let us move through the steps and keep your advice to yourself unless it is requested. We don’t live in this stage but we visit it often.
“I promise I won’t eat anymore chocolate peanut butter cups in my car, on the way home from the grocery store. I am going to juice every morning. If I do better, maybe I will feel better? I will be more spiritual, more positive and even do yoga.”
That is the sound of bargaining for a better outcome. Yes, lifestyle changes are important to our health and especially balancing stress. Don’t confuse this with not taking responsibility. Be responsible! But know that this roller coaster of being disheartened and motivated is the pattern of grieving. We often think that maybe we didn’t try hard enough and part of the denial aspect is thinking that maybe if we tried harder there could be a solution.
The individual is clinging to the threads of hope, however thin and worn the fabric may be. Breakthrough treatments in medicine or intervention by a spiritual being or force are seen as a source of a temporary suspension of the inevitable outcome. –eCondolence
Depression and Anxiety
Depression is the feeling of impending doom, but that feeling sticks around, even when you are happy. It slithers into your existence and it isn’t always tied to a memory or life experience, it just exists. Even on a good day, that feeling can hang around. You can hide it and you can pretend it isn’t there, but it’s the nervous butterflies in your stomach that grow into your chest. Positively thinking it away is not a thing. Depression is not always a mentality that you can control, it’s also chemistry.
Though depression and anxiety do not discriminate, they can be more prevalent in the disabled or chronically ill community.
Imagine building up your goals and life-long dreams. Your ambitious personality and positive mental attitude kicks ass and you have the world at your fingertips but you keep getting knocked down due to uncontrollable circumstances, like your health. Sure, you can dust yourself off and try, try, try again! However, it’s fucking hard and it sure gets old when decades go by and you watch your peers buy houses, new cars and live successful lives. Meanwhile, you try to figure out how you can afford not having income for weeks or months at a time as you recover from surgery, balancing which medications you can afford while making sure there is enough money left over for a cheap dinner. You then start over, just to ride the big wave till you crash again.
It can also be lonely, even when you have supportive friends and family. It’s a place that not many people understand. It’s an unpaid full-time job. It’s exhausting. It’s scary. Support groups are very helpful; finding a community of people with similar health issues helps you cope, not feel alone and also educates you on your illness.
Anxiety is an issue as well because having a chronic illness can be traumatic. For example, I had WPW Syndrome and my heart rate would get in to the 250s. I have also had many scary arrhythmias so when I hear the hospital heart rate beeping sound on a TV, it gives me major anxiety. It is a trigger for me, as well as fast rhythmic tapping.
Put your warrior paint on! You have your medical records organized, tests and labs done. You are making progress with answers or even starting new treatments. You got this! Or maybe you don’t, but you have just accepted the cards you are handed and will make it work. This stage varies for many and is a sliding scale. For some, it could mean you are managing. For others, this stage comes and goes, varying on what condition your health is in. Again, this process is not linear… it’s a scribble!
You might visit the land of acceptance often. Maybe you have a beach house here or maybe you are planning a vacation here but more than likely, you never retire here. We are nomads of this grieving process. We jump around, visit, flip flop between two stages and circle around.
Acceptance is the best place to be. It’s when we feel really positive, and not just faking it. It is when we fight for awareness and advocacy. It is when we make progress or actually have a less painful day. It’s when your treatment is manageable and you’re coasting.
These are the five stages of grieving your chronic illness. Keep a journal, see a therapist regularly and join support groups. This ride is tough but you are not alone. It’s important to manage your mental health as well as your physical health.
Listen to this blog on my podcast HERE
What is a Spoonie?
For those with chronic illnesses, we have a general way to describe our energy levels and fatigue: the spoon theory. We get 12 spoons per day, which is a metaphor in which those with disabilities understand or use to explain how they feel. Each spoon signifies a measurement of energy. Going to the store costs 2 spoons, and on a rough day, taking a shower may cost 4 spoons. Cleaning the bathroom is another 3 spoons. That leaves us with 3 spoons left for the rest of the day. We may have to borrow spoons from tomorrow, leaving us bed-bound.
Spoonies are people with disabilities, chronic illnesses, chronic fatigue and anyone with medical conditions that limit their activity.
My nightstand essentials:
Energy Sprinkles are the energizing sprinkle sister of Healing Sprinkles. Healing Sprinkles were created to help replenish essential minerals and vitamins, balance hormones, promote brain and heart health, reduce inflammation and stress. Energy Sprinkles became a reality after customers asked for a product that would help with energy. This blend is alkalizing, full of electrolytes, flushes toxins, boosts energy and improves overall mood.
Both blends are gluten-free, organ and vegan! Read more about Healing Sprinkles here.
These are blends that I have personally used over the past two years to heal my body. At the beginning of January of 2017, the 5th to be exact, I almost went into cardiac arrest. With a history of cardiac issues and years of medical negligence and misdiagnosis, my body was going into shock and continued to for months. Every day I worried that is was my last. I lost 30 or more pounds without trying, my skin tone was pale and colorless. I was complimented on my new figure but it was so frustrating because I was very scared. I learned about Postural Orthostatic Tachycardia Syndrome (POTS) and remembered that I was diagnosed with it as a teen. Because I never had a good cardiologist or medical team on my side, I never learned about it or how to manage it. It was my normal and less scary than my other heart issues like Supraventricular Tachycardia and Neurocardiogenic Syncope.
My heart rate would jump from 40bpm to 160bpm within seconds. I was going into circulatory shock because my heart was misfiring signals due to my other complex cardiac issues. Thankfully, I got a pacemaker six month later after several other opinions and searching for the right doctor. Dozens upon dozens of ERs dismissed me with anxiety. After finally getting an event monitor and a Tilt Table Test to prove my “anxiety” was something else, I was able to get the care I needed. I was so malnourished and my bloodwork was all over the place. I was always told to avoid salt because of my heart but the truth is that I needed to be on a high salt diet to expand my blood volume and raise my low blood pressure.
I also did more research, advocating and begged for more testing and finally found out why I have had a lifetime of heart issues (I have already had four cardiac ablations and open heart surgery), digestion issues, chronic migraines, multiple sensitivities, dysautonomia (dysfunction of the autonomic nervous system), chronic pain, joint hypermobility and subluxations, and so on. I have Ehlers Danlos Syndrome. I wish more than anything I had the right doctors who were educated and that could have helped me manage my debilitating chronic illnesses much sooner.
It is my mission to help others, to educate and advocate. There are 12 million misdiagnoses per year. My misdiagnosis of anxiety almost killed me multiple times. I am lucky to be here to stand up for our future. I am currently in school to get my prerequisites and finish a degree to get myself into the medical field where I can make the most of my mission.
Don’t ask an open-ended question in regards to helping out.
Let them vent.
We are not lazy.
“You don’t look sick,”
The Spoon Theory
Thank you for caring enough to read this.