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.
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.
As you know, awareness is my passion. February is Black History Month (current read: Maya Angelo Poems) and also American Heart Month. I want to share my heart story in hopes to inspire and educate.
I was born with Wolff-Parkinson-White Syndrome, meaning that I had an extra pathway between my heart’s upper and lower chambers. This pathway cause rapid heart rates.
I was undiagnosed until my first cardiac ablation at the age of 19. Most of my childhood, I complained that my heart was racing but my softball and basketball coaches, P.E. teacher and most adults said that it was normal when you are running around. Well, it was normal for me alright.
Eventually, my face started to turn bright red during episodes and white around my eyes and lips. It was exhausting, but once again, it was my normal. I loathed gym class. To get out of it, I would go to the school nurse and tell her I didn’t feel well. At 15, I took my usual stroll to the nurse’s office to get out of P.E. and after looking at my face, she was prompted to take my pulse; it was too fast to count. She called an ambulance but my fast rhythm had converted to a normal rhythm by the time they showed up. It was difficult to catch the arrhythmias so my parents and doctor met and decided an event monitor was best. Within the hour of getting home from the doctors visit, my arrhythmias kicked in and we sent it in right away. I was having Supraventricular Tachycardia with rates over 250 beats per minute, nearing the 300s.
After being told I would outgrow SVT (which I had since I can remember), I found they were wrong and it only got worse. My heart would go into these arrhythmias about five times every hour, all day, sometimes lasting up to 30 minutes. At the age of nineteen, I finally have my first cardiac ablation. This procedure lasted six and a half hours! Normally, it only takes 45 minutes to an hour and a half, but they discovered the extra pathway and I was a difficult case. Since it was unsuccessful, we tried again in six weeks. Though my episodes were reduced, I still had arrhythmias and had two more ablations, a total of four cardiac ablations.
My heart would drop into the 30s and 40s and shoot up near the 200s, all day and night, with no rhyme or reason. I always asked what caused all my health issues no one cared to investigate. In my early twenties, I was also diagnosed with (POTS) Postural Orthostatic Tachycardia Syndrome but never spoke of it again. I had no idea what that meant and was uneducated by my doctor, therefore I never managed it. I didn’t stay hydrated and I was told to avoid salt, when really I needed a high salt diet. I spent my entire 20s with roller coaster heart rates and a lack of education about my health, as well as missing puzzle pieces to what was causing my chronic health issues.
In 2011, at the age of 26, I had open heart surgery. Prior to this, I went to multiple ER visits and appointments but they were looking for SVT and high heart rates, not a leaky aortic valve. I spent years being dismissed as they refused to look further. After finally getting an echo, I was diagnosed with moderate to severe aortic insufficiency. No doctor in my area wanted to touch me and when one hesitantly suggested to operate, I did not trust his confidence. I joined Heart Valve Surgery group online for support and found Kevin Accola, the most incredible surgeon in the area.
Dr. Accola said, “wow, what an interesting case! I can’t wait to find out what is going on and fix it! When is good for you?” I about cried in disbelief that someone cared and wanted to help. We scheduled a date. He informed me that he would do his best to repair my heart to avoid an artificial valve so that I didn’t need to be on harsh meds my entire life. He showed me the valve I would get just incase I needed one. I held it in my hands, the metal piece that could go into my heart… the heart that my doctor was going to have in his hands. Fortunately, he was able to repair a hole in my aortic valve and with a three inch incision instead of the classic nine inch sternotomy.
Healing was tough but pretty smooth. I had almost accidentally overdosed on pain meds. I was supposed to have someone taking care of me for the first two weeks and with a broken sternum and sensitive heart rhythm, I was pretty out of it and couldn’t keep track. I also had a hard time with my breathing and started to get fluid in my lungs but worked hard with my spirometer and by three months, I was feeling back to myself. I did reject the sternum wires and needed to get them removed as they were about to come out on their own!
In January of 2017, I was having scary arrhythmias and my body was going into shock. I was in the ER every other night for two months. My arrhythmias were not getting caught at the ER so they diagnosed me with anxiety and panic disorder, sending me home. I saw several doctors but once you get (mis)diagnosed and labeled, it is hard to be taken seriously. I finally got an event monitor from my cardiologist to record my rhythms for a few weeks. I passed out leaving an appointment and it was caught on the monitor. My doctor ordered a Tilt Table Test and triggered an episode. I was diagnosed with Neurological Syncope, where my heart rate would randomly plummet. With my nighttime heart rate dips into the low 40s and occasional 30s, I finally got a pacemaker in June of 2018. Truth be told, I could have used one a decade ago, when I had documented ER visits with rates in the low 30s. However, I stuck with the same doctor and never got outside options previously.
As of today, my latest heart update is that I have been having tachycardia in my sleep, picked up on my pacemaker checks. My recent echo showed that three of my heart valves leak mildly and my aortic valve leaks mild to moderate. Both my aortic and mitral valve have sclerosis (calcification and thickening). My aortic root is mildly dilated, which could be the start of an aortic aneurism. Aneurisms are fairly common with Ehlers Danlos Syndrome.
At some point, I will need my valve replaced (at the very least). I decided to go with a pig valve to avoid the meds and because I rejected the sternum wires last time. I also have a genetic mutation MTHFR which can possibly be the cause of metal sensitivities, and another mutation that causes me not to metabolize Warfarin, a common med used to thin your blood after a heart valve replacement. Fortunately, I didn’t need the artificial valve earlier, before I found out about these mutations.
And now we watch and wait. Having a lifetime of heart issues is a scary thing to live with. Knowing that age is nothing but a number for me, and irrelevant, is a hard pill to swallow. Being told I am “young and healthy” is something I hear often. Even with my health history, I still have a hard time being heard. This is why advocacy and being educated on your health, is so important. I truly believe that I would be dead if I hadn’t fought to be heard.
Keep up with your medical check ups and get copies of all of your tests and labs. Ask questions, get second opinions and educate yourself and your family. If you don’t like your hairstylist, you go to a different salon, right? So why do we act stuck with whatever doctor we are handed but will so easily get a new stylist? Find a doctor that you trust and feel comfortable with. Be a teammate with your health plan and don’t give up when you feel dismissed. Find a support group online because you will learn more from them than your physician.
Spread awareness, educate yourself and others, and advocate for your health. You got this!
SIXTEEN! On the second day of the second month of 2003, I had two babies!
I was so scared and had been in the hospital for weeks at a time due to preterm labor at only 20 weeks. By 28 weeks, I was fortunately staying in the hospital, 2 weeks in, and went into labor. I was told they had a 50% chance of survival. I had to leave the hospital without my babies, worrying whether or not they would make it through the night. There were many close calls and the first year was tough with oxygen tanks, apnea alarms, multiple specialists appointments and times two! These boys are strong and they are fighters. I am so lucky to have them in my life, to call them family and to watch them grow and become amazing humans.
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.
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.
Banana Bag Oral Solution is a drinkable IV solution that can help skip the expensive ER visit and assist in recovering from an illness, long day of travel, hangovers or chronic illness management.
We get dehydrated easily from a night of drinking, illnesses, a day in the heat, lack of self-care or stress that causes you to forget to hydrate, patients with Postural Orthostatic Tachycardia Syndrome, Dysautonomia and many other reasons.
Banana Bag Drink is easily available online and they also have subscription options. It comes in a convenient single serving packet that you can bring with you in your purse or suitcase. It has saved many from ER visits where they would spend hundreds to be seen just to get fluids. People with chronic illnesses such as POTS sometimes need to get a bag or two of fluids and staying on track with Banana Bag has cut down expensive trips, saving time and money, less invasive, and less exposure to illnesses.
Each packet is formulated for easy methylation, so it is safe for anyone with the MTHFR mutation. Anyone who struggles from vitamin deficiencies will also benefit. People can also get deficiencies from malabsorption in the intestines from IBS, Crohn’s Disease, Celiac Disease, etc. When you are dehydrated, your blood volume is less than desirable and this can result on that dizzy feeling, nausea, and headache due to blood pressure dropping and your heart rate increases to compensate. Banana Bag is designed to expand your blood volume like an IV solution would.
It is a game changer and great to have around should you need a speedy recovery.
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.
2018 was a good year, despite having cancer, multiple surgeries and a few ups and downs. 2017 was awful and scary. My heart was at it’s worst. My POTS flare was the worst I ever had in my life. No doctors were on my side. I was having potentially fatal heart arrhythmias and I am shocked that I am here to tell about it. I am forever grateful for my pacemaker and supportive family.
2018 was the year I got my health under control. I learned my body and what I can handle. I take care of myself and minimize toxins in my life. I advocate for myself and after 33 years I found out what was wrong with me and that it isn’t normal to feel pain every day, among a million other things. Despite no cure, simply having an answer has made my life better by educating myself, spreading awareness for others and learning about what is best for my health, as opposed to being in the dark.
2019 is here and we all say that each new rotation around the sun will be the best ever, but I have learned that it is okay to feel. It is not okay to plaster fake positivity over emotions. I set goals daily, weekly, monthly, yearly and will continue to work on every aspect of my life whether it is day 1 or day 365.
Sometimes I have bad days and I hate that it affects others, especially those who love and care about me. I am not going to share just my perfect moments and give people Sunday’s best version of myself. I am human. I know I am not easy to deal with sometimes. I am sorry, but this is me. I’m working on it.
This year, for me, is about acceptance and moving forward. I have been grieving the reality of my health and the limitations and life changes that come with it. I was angry. I was in denial. It is important to focus on the good things in life but that doesn’t mean you need to pretend that tough times exist…. just don’t dwell there. I accept the cards I am dealt. I refuse to be in denial, ashamed or to hide, and will learn how to cope better and continue to improve the things that I can control.
I hope you all are inspired by a fresh start but don’t forget that you can start fresh anytime. Each day is a new story to write. We are in control of how we navigate through our story and how we handle the things life throws at us. Pick your own adventure and make it a good one.