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

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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Health

Banana Bag Oral Solution

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.

Health, Unveiling Invisible Illnesses

How To Be There For Someone With Chronic Illnesses

Don’t ask an open-ended question in regards to helping out.

    An example is asking someone if there is anything you can do to help; this is too broad of an offer. Though it is very kind, most likely the person you offered help to will feel too embarrassed to think of a specific thing. Instead, offer specific help, such as a housecleaning or dropping off dinner on an assigned night. Not only is this assistance incredibly helpful, but you also surpassed the uneasy ice breaker. No one knows what scope of help you are willing to give, nor do they want to feel like they might be asking too much. So, if you truly want your assistance redeemed then don’t give them the option to think and ask… just tell them when and how.

Let them vent.

    You don’t have to have any answers or advice, just listen. We are used to small talk and the autopilot response, “I am fine, and you?” Advice is usually not something we are looking for unless we ask. It is likely we are very familiar with our health and have been living with chronic illnesses for some time. We tend to research, educate and advocate for our health. However, if we don’t feel like talking about it then just being present and distracting us from our health is a nice break. But when we do want to open up and vent about our health, just listen.

We are not lazy.

    “It must be nice to be in bed all day,” is going to get you the asshole award. Trust me, we would rather have a life or be out at the beach, out with friends or working on a fun project, but instead, we are prisoners to our own body. Be mindful that spending the day in bed is not as glorious as it sounds for a chronically ill person… that means it was a rough day.

“You don’t look sick,”

    or “you are too young and healthy to be sick,” is something that we hear often and it only shows ignorance and a lack of empathy. Invisible illnesses are not obvious or blatantly apparent and because of this, we are often dismissed by medical professionals or deemed drug seekers. When you say that, it feels like a betrayal and a reminder that no one understands. We may post our good day selfies or fun outing but what you don’t see is the 24/7 pain, depression and grieving, the tears, the complications, and multiple doctors visits. You see a mask, warrior paint and the fake normal version of ourselves. We just hide it well.

Gift suggestions:

    • If we are in the hospital or recovering from surgery, there are many little gift suggestions. After being asked by a friend what to bring to a hospital visit, I came up with some awesome go-to items: face wipes, lip balm, books, magazines, fuzzy blanket, essential oils, snacks, headphones or anything from my

Amazon Spoonie List

    • or

Wildling Apothecary

    .

Patience.

    We feel guilt and a whirlwind of emotions for having a chronic illness and for anyone who is involved. Your patience and support mean the world to us, even if we have a hard time showing it. Don’t be afraid to point out our flaws but please try to be understanding and forgiving, as sometimes we don’t realize our suffering is showing in ways that can affect you, like an attitude or resting bitch face. Just tell us it’s okay and help is through instead of getting mad and angry.

The Spoon Theory

    . We have a name that we call ourselves: spoonies. There is a spoon theory. In a nutshell, we have about twelve spoons per day. Each spoon represents our energy. Taking a shower might cost 2 spoons and cleaning our bathroom is about 5 spoons. Running errands and a doctors appointment takes about 5 more spoons. Then we are out of spoons that day, meaning we are tapped out and exhausted. Sometimes we even have to borrow spoons from the following day, leaving us bed-bound. Many of us are trying to stretch our spoons out through the day, so when we cancel last minute, try not to get upset. Chances are we are pretty bummed about it but ran out of spoons. We still love being invited though!

Thank you for caring enough to read this.

Health

Detoxing Juice

Celery Juice

Did you know we all have gut rot? Gut rot is rotting food particles that have been rotting in your intestines for YEARS. Celery juice helps to clear that out and to increase and strengthen your bile, which breaks down fats and kills pathogens. This juice also supports and heals your central nervous system by clearing out toxins. This is also great for anyone who has Epstein Barr or Streptococcus, by cleaning the neurotoxins that are inflamed. If you have MTHFR like me, you have a hard time detoxing your body; celery juice is a great option.

Drinking celery juice on an empty stomach, first thing in the morning is a great routine to add for the start of your day.

Cheers to self love and healing your body for the New Year!

Unveiling Invisible Illnesses

Unveiling Invisible Illnesses Documentary

Unveiling Invisible Illnesses – Documentary

First interview down!

I am looking for more volunteers to share their story on struggles with invisible illnesses, misdiagnosis, medical negligence, rare diseases or anyone in the medical field or a loved one who wants to share their side.

mistibludream@gmail.com

@mistibluday

Health

Fudgey Vegan Holiday Brownies

Fudgey Vegan Holiday Brownies

Featured in The Beachside Resident December 2018 issue

Maybe you don’t have time to whip up some baked goods from scratch but you still want to bring something impressive to the table that everyone can eat. I always stick to organic labels to avoid extra fillers, pesticides and chemicals. Organic tend to list healthier ingredients. Don’t be fooled with “natural” or “organic” labels unless you see the USDA stamp of approval. Gluten-free is the route I go. Most of us have a relative with sensitivities so why not be safe?

You will need:

• Box of organic GF brownie mix

• Cooked sweet potato

• Applesauce

• Cinnamon or Healing Sprinkles Spice Blend

• Carob chips or cacao nibs

• Coconut flakes (optional)

• Cashews (optional)

• Coconut oil

Preheat oven as instructed. In a bowl, combine brownie mix and substitute eggs for a half cup of applesauce and half a cup of cooked, mashed sweet potato. Add water or oil as directed on the box. You can add more sweet potato if you want to add less oil. I usually add just a tablespoon of coconut oil instead of the recommended amount. Sprinkle a generous amount of cinnamon and your choice of carob chips or cacao nibs. After blending the mixture, top with chopped raw cashews and coconut flakes. Cook in the oven for 10 minutes over recommended time. Now you have an almost made from scratch, rogue batch of brownies! I like to drizzle a little CBD oil on mine.

Health

Healing Sprinkles

Food is medicine! We are destined to age, but why not do it well? This blend of herbs and spices have been around for a long time. The selected blend has many anti-cancer, anti-inflammatory and anti-diabetic properties that also reduce risks for heart disease and brain diseases. Antioxidants, fiber, minerals and vitamins also encompassed in this healing mix.

Sprinkle it on your cereal, oatmeal, toast, or mix it into your smoothie blend. Add it to your desserts, muffins, brownies and baked goods. Top in on sweet potatoes, coffee or fresh fruit. This is an easy way to maximize your health and get natural plant-based benefits.

Shop

Carob

  • Rich in calcium
  • High in fiber and protein
  • Diarrhea relief
  • Antioxidants
  • Caffeine free
  • Tastes like chocolate
  • Excellent source of vitamins and minerals

Maca

  • Increases stamina
  • Balances deficiencies
  • Supports fertility
  • Balance hormones for both men and women
  • Immune support and circulation
  • 19 essential amino acids
  • Rich in vitamins and minerals
  • Alleviates Chronic Fatigue
  • Reduces signs of aging
  • Enhances memory

Cinnamon

  • Loaded with antioxidants
  • Anti-inflammatory properties
  • Reduces risk of heart disease
  • Great for diabetics
  • Reduces high cholesterol, lowers lipids
  • Helps metabolism
  • Protects neurons and brain health
  • Anti-microbial and anti-cancer

Turmeric

  • Antioxidants and anti-inflammatory
  • Used in medicine for thousands of years
  • Improves brain function and reduces risk of brain degenerative diseases
  • Lowers risk of heart disease
  • Can help prevent cancer
  • Helps with arthritis and pain
  • Helps with depression
  • Anti-aging

Ashwagandha Root

  • Ancient medicinal herb
  • Anti-cancer properties
  • Reduces cortisol level
  • Reduce stress, depression and anxiety
  • Improve muscle mass and strength
  • May reduce inflammation and lower cholesterol

Lemon Balm

  • Eases stress and anxiety
  • Great for heartburn and indigestion, cold sores, insomnia and high cholesterol
  • Excellent use for brain health
  • Calming

Nutmeg

  • Relieves pain
  • Soothes indigestion
  • Improve skin quality
  • Reduce insomnia
  • Support immune health
  • Improve cognitive function
  • Improves circulation

Ginger

  • Anti-inflammatory
  • Anti-nausea
  • Antioxidants
  • Reduces muscle pain and soreness
  • Helps with joint health
  • Reduce heart disease
  • Helps with indigestion
  • Reduce menstrual pain
  • Lower cholesterol
  • Anti-cancer properties
  • Improves brain function

*Please consult with your doctor before adding spices into your diet if you are on certain medications

Health, mental health, Unveiling Invisible Illnesses

The Invisible Battle of Chronic Illness

Ehlers Danlos Syndrome is an umbrella of many ailments that fall beneath it. This genetic disorder manifests in many ways; various joints and organs are affected and there is a large range of severity on each spectrum. None of us EDSers are the same. We call ourselves zebras because most doctors think of horses when they hear hooves, but rarely it can be a zebra. We are the zebras in the medical world. There is no cure for EDS but each symptom can be managed separately. It is tricky because we sometimes have several specialists to manage each symptom, or comorbidity, which can resemble having a full time job. Juggling this health conditions not only takes a toll on our energy but it also takes up most of our time. 
On a regular basis, I see several specialists: cardiologist, electrophysiologist, pulmonologist, cardiothoracic surgeon, rheumatologist, neurologist, otolaryngologist (ENT), endocrinologist, gynecologist, gastroenterologist, and of course my general physician. I also sometimes see a chiropractor for traction and the use of some machines to help build strength in my lower back. I don’t have access, but need to see a geneticist, nephrologist, ophthalmologist and orthopedic specialist. That is about 12-16 specialists every 3-6 months. If I see fourteen doctors four times per year, just as a guess, that is fifty six doctors appointments in a year! I also end up in the ER, on average, about six times per year and usually have one or two hospital admissions… on a good year. This year, I had a few surgeries already and last year I had a pacemaker put in. Last year I probably had close to fifty emergency room visits so we won’t count that year. 
An average day for me is waking up around 2am-4am with lower back pain, thirst and several bathroom breaks. I never truly sleep through the night. I have a dysfunctional nervous system (dysautonomia) and suffer from Neurocardiogenic Syncope, Postural Orthostatic Tachycardia Syndrome, sleep apnea and issues with my body temperature, blood pressure, heart rate and more. My pain level has NEVER been under a five on the 1-10 scale. Not even for a moment. I usually have to be out of bed by 7-8am because my body is so sore when lying down for a long time. Even if I am sick, I have to get out of bed or the pain is so severe that I can not breathe. This means that I can not sleep for over six hours without a break, or the pain is unbearable. 
I take most of my medications and supplements in the morning. I usually start my day off with a headache, nausea, low blood pressure and a general feeling of being hungover but without the fun tequila shots. As I make it to midday, my entire body aches. Every cell in my body hurts. I feel so fatigued and exhausted, even if I didn’t do much. My head hurts and if I am around strong perfumes, chemicals or exposed to any chemicals in my food, I will have a runny nose, body aches and migraine with aura (visual disturbances). My lips and left hand go numb, simultaneously, about five times a day. No one knows why. My symptoms often mimic a stroke so I fear that one day if I have a stroke, I wouldn’t know the difference. I have chemical sensitivities that are hard to avoid. Wearing a mask and watching what I eat helps. Usually by 5-6pm, I am ready to collapse. Sometimes I make it through, with a smile on my face, because I try to live my life to the fullest. Despite how I feel, I push it to the limit to be the best mother, wife, friend, student and so on. I refuse to give up no matter how hard it gets.
By evening, I have made it through the day and usually my body temperature is low and I am freezing but somehow feel like I am burning up and running a fever. My temperature usually will read 96-97 degrees. It is incredibly uncomfortable to feel hot and cold at the same time. My chest feels heavy at night and if I lie on my back I start to feel fluid in my lungs. On a tough day, I will breathe so shallow while I fall asleep that I jump up gasping for air, with low oxygen and a racing heart. Other nights, I can’t sleep because memories flash back from the past when I was in the back of an ambulance or in the ER with chaotic arrhythmias. I close my eyes and hope to get to the next morning. It all starts over again in the morning. 
Depression can be a struggle for those who suffer with daily pain or frequent traumatic hospital visits. I recently came up with the term “Post Traumatic Health Disorder.” Depression can also be a factor because we feel like we have lost the person we once were and are prisoners to a body that doesn’t feel like it belongs to us. Our friends drop like flies the more we cancel on them, relationships are strained and many physicians don’t take us seriously because oftentimes these symptoms don’t show anything in blood work and we are passed off as a mental case. Many doctors are not familiar with rare, genetic disorders so they typically label us with anxiety or a catch-all diagnosis and send us on our way. We feel alone and like no one understands. It is scary, disheartening and frustrating. Seeing a therapist is important, as well as finding a support group.
Having an invisible illness is a battle and we all think of ourselves as warriors. We are warriors. We battle and fight every damn day. Tears are shed on the battlefield often and we watch our tribe through ups and downs on our online support groups. We have lost some and watched others give up. We keep fighting and supporting each other and raising awareness while we struggle to make it out of bed.
Always be kind to others, as you have no idea what they are battling under all that makeup and forced smile. And to those who are my fellow warriors, I believe you.