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.

*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.

———-

http://www.suicidepreventionlifeline.org/

tel:1-800-273-8255

Listen to this blog on my podcast HERE

Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Endo and Interstitial Cystitis with Francesca

 

 

Endometriosis is when tissue similar to the lining of the uterus spreads outside of its home to other organs, causing pain and inflammation. It can begin as early as the first mensuration. It is estimated that 1 in 10 women suffer from endo. There are many theories about cures and causes but more research is required to get the answers we need and spreading awareness is a start.

 

Francesca has started an online support group years ago and is on the battlefront paving the way for young women. Five years ago, she had a laparoscopic excision done by Dr. Sinervo and no longer experiences endometriosis as her chief complaint. Her main issue now is Interstitial Cystitis, or painful bladder syndrome that causes pelvic discomfort. Francesca is also seeing specialists for other health issues like Orthostatic Intolerance.

 

What is your official diagnosis?

Endometriosis, Interstitial Cystitis, Pelvic Floor Dysfunction, Irritable Bowel Syndrome, and Orthostatic Intolerance.

How long did it take for your first initial symptoms to get an official diagnosis?

Four or five years for Endo, IBS, and PFD. Two years for IC, and about six months for OI.

How have your illnesses affected your daily life?

Currently, I no longer suffer from Endometriosis pain, but I do suffer daily with PFD and IC pain. I also struggle with dizziness and heart rate/blood pressure problems daily due to OI. I struggle every day to work, go to school, and balance a social life.

Do you have any advice for those who are newly diagnosed?

If you feel your doctor is not listening to you, it’s always best to seek a second opinion (or even more if you have to) until you feel you have found the best care. Always be your best advocate and try to find a true well-versed specialist.

Tell me a little more about your group:

Teens And Young Adults With Endometriosis was a support group I started in 2014, originally for teenagers that have Endometriosis. As my members and I became older, I decided to open it up to young adults as well. Through my group, I hope to not only give support, but help provide these members with an early diagnosis, proper education, and treatment options.

What is something you wish every doctor understood?

I wish every doctor understood that it is extremely important to keep up to date on new medical information. Since so many do not do this, we are forced to be stuck with misinformation and misguided treatments or even unnecessary treatments that could be avoided.

Favorite quote:

“Let me tell you, if 180 million men worldwide had unbearable pain during sex, bowel movements and exercise, and were offered as treatment: feminizing hormones, surgical castration or pregnancy, it would be an international emergency to which we would transfer our combined defense budgets. We would not be having this misogynist conversation regarding enough money.”-Nancy Peterson

Three things you can’t live without:

Heating pad, boyfriend, and my Endo Warriors

What goals do you have for the future?

Currently, I’m taking my prerequisites for nursing school. I hope to graduate with my bachelors and possibly my masters in nursing. My dream job would be to work with an Endometriosis specialist or in pediatrics. After that, I hope to marry my boyfriend who has been with me through all my diagnosis’ and to have a few children.

What is the scariest moment you experienced during your health journey and what are the ways you manage mental health while dealing with medical issues?

The scariest moment was probably when I had a bladder installation for my IC (where they put medicine into your bladder with a catheter). They did the procedure incorrectly with the wrong sized catheter, made me bleed, spilled half the medication on me, and forgot to use lidocaine. I was supposed to expel it after a half hour but was unable to urinate for hours leaving the medicine in me to damage my bladder and cause a severe bladder spasm. I was unable to get back to my doctor so I had to catheterize myself with the wrong size catheter (too large) and the pharmacy also forgot to give me lidocaine. I was able to do it but was left in severe pain for about a month.

To manage my mental health, I regularly see a therapist and make sure to take breaks to do the things that I love even if I have to do them in bed. Support groups on social media are also helpful.

 

Francesca’s Facebook, Instagram, Twitter, Youtube, Tumblr: @msendowarrior

 

Health, Unveiling Invisible Illnesses

Spoonie Nightstand

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:

Some of my favorite necessities are found on my Spoonie Amazon List and others are from Wildling Apothecary.

  • Enchanted forest essential oil scented CBD and magnesium lotion, for aches and pains, from Wildling Apothecary

  • Salt lamp for purifying the air and of course to shed some light while I eat in bed… yes, I eat in bed.
  • A mini Buddha that was my grandmother’s. She was my favorite person and we had such a special bond. She lived to be 96 years old and I still think about her every day.
  • Lip balm is something I always need on my nightstand because I am often dehydrated, despite how much water I drink. I can’t stand the feeling of dry lips so they are always moisturized.
  • I always have water on my nightstand but since I just tidied up and added a little shelf, only herbal tea is pictured. I have herbal tea several times per day. I love peppermint and ginger for an upset stomach, kava or chamomile to relax and elderberry for immune boosting. I have quite a collection and also make my own blends.
  • Books! I won’t lie, it takes me forever to get through books because I flip through many and with a hectic schedule, it is hard to squeeze in the time. Really, I just need to make the time. My current favorite reads are The Dysautonomia Project and Dirty Genes.
  • My necklace from AWARECauses and labradorite earrings from Do Designs find their happy homes next to the bed because I can’t sleep with jewelry on.
  • My nightstand and granite heart dish were both handmade by my husband. He is pretty damn awesome.
  • I have my tiny (Walmart) heater year round. Dysautonomia is the dysfunction of the Autonomic Nervous System and can affect the automatic things that your body does, like breathing, body temperature, blood pressure, and heart rhythm. When my body temperature drops I feel freezing; my hands turn white and I have a hard time breathing due to shivering. This little heater keeps me warm without making my husband hot. I mean, he is hot though!
    I love my diffuser and use many different blends depending on how I feel, my mood, or the time of day. Certain oils also keep the air clean and act as antiseptics. Not shown, under my nightstand, is a box of things like a blood pressure cuff, pulse oximeter, thermometer, hot packs for stiff muscles, wrist braces, compression socks, and other necessities. I try to keep them organized so I can find them easily. Monitoring my health is important so having access to a blood pressure cuff, for example, is needed to make sure my bp doesn’t get too low. It’s like being my own nurse and helps prevent ER visits because I can manage my care to an extent.
    I keep a collapsible walking aid next to my bed because some days I overdo it and can’t get up on my own. Other times, my blood pressure drops and I nearly pass out. There are also times when my joints just give out and I fall. Some days are better than others and some days are worse.
    Also not pictured but under my bed, is my Biotronik pacemaker transmitter. It transmits a report to my doctor each night. Technology is pretty amazing! I have an apnea machine under my nightstand too, but I don’t have insurance so I am still working out the kinks on finding the right mask. I absolutely hate it but not breathing is worse and my heart has enough damage as it is. Sleep apnea is another common form of dysautonomia. I have had it since I can remember but was dismissed at a young age and literally called a liar because I was not overweight or with swollen tonsils. Dysautonomia is not well known, especially fifteen years ago. Here I am at 34 and I am just now being listened to. This blog is my sole purpose to educate, advocate and raise awareness.
Health, Healthy Food

Energy Sprinkles, Healing Sprinkles and My Health Story

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.

My story:

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.

 

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