Health

May is Ehlers-Danlos Awareness Month

May is Ehlers-Danlos Syndrome Awareness Month. WTF is EDS? I made this graphic to explain more about this congenital connective tissue disorder.

Why are there so many symptoms and complications? Because your body is made of connective tissue, therefore it is a systemic clusterfuckery of the body. “Have you tried changing your diet?” Actually, I have to eat a strict diet to avoid worsening symptoms due to sensitivities, so I already have cut everything out and I even eat kale.

Unfortunately, EDS is not something you can beat or recover from. There is no cure or treatment. You can manage symptoms and usually that requires multiple specialists: cardiologist, pulmonologist, neurologist, gastroenterologist, ALL THE OLOGISTS.

Not all EDSers are alike. With everything, there is a spectrum of various levels of severity. We call ourselves zebras because in the medical field, healthcare providers are trained that if you hear hooves to expect a horse, not a zebra; we are the zebras that are often missed. Awareness is important so that 1 in 5,000 are not dismissed and medically neglected because they “don’t look sick.”

Related blog posts:

The Cycle of Grieving with a Chronic Illness

How To Be There For Someone With a Chronic Illness

Health, mental health

The Invisible Diaries Podcast and Show

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 theinvisiblediaries@gmail.com and introduce yourself.

Instagram and Facebook Daily Topics

  • Mental Health Monday – Mental health awareness, support and education
  • Teach Me Tuesday – Education, information and learning
  • Words of Wisdom Wednesday – Quotes and inspiration
  • Thankful Thursday – Focusing on the good and finding balance
  • Favorites Friday – Favorite things and product highlights

Stay tuned and follow us on social media for updates on our official launch!

Health, mental health, Unveiling Invisible Illnesses

Rare Disease Day

It is Rare Disease Day so obviously I am jumping on this moment to raise awareness. I have Ehlers-Danlos Syndrome and a rare type, called cardiac-valvular EDS or cvEDS.

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.

Health, mental health

How Can Anyone Heal With Toxic Positivity?

We are programmed to praise positivity and joy while shunning grief and sadness, which isolates those who need help. As children grow after years of being told to behave and smile, they become adults wearing masks. Our bodies suppress anger, pain, sorrow, suffering and negative emotions that we are not allowed to acknowledge. These buried feelings grow with no release as we walk rampant, showing our teeth to the world to presume only happiness exists within us.

Relationships deepen through vulnerability. People need to open up about their fears, not tuck them away to pretend life is perfect. The world sees strength defined as being tough and resistant to anything other than joy. Sensitivity is seen as weakness.

People need to open up about their sorrows, not hide them with a smile that says “I’m fine.” People need to discuss their anger, not bottle it up. People will explode. People will crumble.

How can anyone heal in an environment that doesn’t allow basic human emotion to breathe?

We are all responsible and need to change our way of thinking so that we can make others feel safe to talk and reach out.

Our culture is designed to suppress half of our basic human emotions, leaving us depressed actors.

It is time to face the reality that life is not perfect and human emotions are not linear. Life is hard and pretending that we are all okay is dangerously exhausting.

Stop telling people to suck it up or that they will be fine. Ask how you can help, listen, and pay attention to the subtle details. Check on your strong friends, your happy friends, and your quiet friends.

Take off your masks and let others know it’s okay to not be okay. It is okay to cry, to grieve, to be angry, to feel lost and to feel frustrated.

We are not robots.

We can’t heal by dreaming of rainbows to swallow our pain and trauma. We heal through a process. We prevent crumbling by expressing emotions. We cannot continue to build a stigma that negative emotions equal weakness. It is time to change the rules.

Health, mental health, Unveiling Invisible Illnesses

Waking Up in Pain

Mornings are hard. When you think of Sundays, you think of sleeping in and waking up to the sun finding it’s way to to you. You think of sitting up, a nice stretch and a moment to admire the open window sharing hints of a beautiful day.

The reality is that you wake up from pain. And you have woken up several times already but you hurt too much to go back to sleep and the sun is up now, so you may as well get out of bed. Lying in bed hurts. It isn’t this relaxing thing where you can leisurely sprawl out in bed and feel like you are on a cloud, melting into your mattress. No, you have to move because one position makes your tailbone go numb and another hurts your collarbone and lying on your stomach makes your back feel broken.

So, now you get up and everything pops back into place. Almost everything. Your left hand and lips are tingling and numb but it only last a few minutes. You walk to the bathroom, holding on to everything you pass for stability so that you don’t fall. Even when you sit down, reaching to wipe is excruciating and demoralizing. It breaks you just glimpsing into the future, wondering if are going to need help wiping your own ass one day. Then, as much as you want to crawl back into bed and melt into your significant other, you quietly walk out of the room so you can find something to do and walk off the pain of sleeping.

Your head is killing you and you are nauseous as if you are hungover. As you walk to the kitchen, everything fades away and you can’t see. Your body starts to feel fuzzy and go numb, just like before you pass out. You don’t typically fully pass out so you know you can just keep walking through it as long as you hold on the way there. You are a pro and have smiled and held conversations while on the brink of passing out but you know it passes and this is your norm.

When pain levels are high, your morale is low. Your dreams and ambition slide over to the back burner. Sometimes they even get put away into Tupperware to decay in the back, hidden behind the fruit. Sometimes the sunshine creeping in through the window looks so far away. But you just get through this. You hold on to the idea of your next good day, whenever that may be. You find hope in new remedies and whatever ways you can try to have control over your health. You find hope in the people who support you and your loved ones.

“Mornings are hard. When you think of Sundays, you think of sleeping in and waking up to the sun finding it’s way to to you. You think of sitting up, a nice stretch and a moment to admire the open window sharing hints of a beautiful day.”

*On the pain scale of 1-10, I have never been under a five. My one is a five. I am not wanting sympathy but what I am wanting is to be honest about how I feel instead of hiding with an autopilot response of “I’m fine.” I want to raise awareness for people like me so they don’t feel alone, and for people without chronic pain so that they can understand their loved one or friend. We live in a world of sucking it up and smiling through the pain. We are suppressed and depressed with a bottled soul. It isn’t right. Be real and let others be real so they they aren’t lost and alone.

mental health

Toxic Positivity

Toxic positivity is a thing. We are raised to suck it up and smile. Well, fuck that. I want my friends and family to be real. I want to know about your shitty day. We all have those days. I want genuine. Raw. I don’t want you to fake anything for me or anyone else. Let people feel safe! Break the stigma of bottling shit up and autopilot responses like “I’m fine, and you?” Mental health is an epidemic because we all participate in hiding, making everyone feel alone. It’s time for change.

mental health, Unveiling Invisible Illnesses

Are You Still In There?

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.

Health, Unveiling Invisible Illnesses

The Grey Area of the Medical Field

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.

Health, Unveiling Invisible Illnesses

The Cycle of Grieving a Chronic Illness

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.

 

Anger

There are moments you are doing something mundane, like brushing your teeth, and you just start sobbing.

“Why me?

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 me?”

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.

 

Bargaining

“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.

Acceptance

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.

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