Health, Unveiling Invisible Illnesses

Holistic Vs. Modern Medicine

The ongoing argument forever continues as people debate which is better: holistic or natural medicine? Supplements vs. medications, surgery vs. a holistic approach. Which is the best? The seas part and divided we stand on either side, just like a political preference or religious choice. The sides argue with one another. il_794xN.2012082761_8020

As someone who owns an apothecary shop that offers herbal tea, CBD, and other natural products, I can say that the natural approach is always a great start. However, I don’t strictly preach one side or the other. I believe in the balance of all things. Sure, too much of anything can be damaging but that also includes nutrients. Did you know there is a such thing as nutrient poisoning? Many people are quick to blame everything on lifestyle choices but nothing is ever a one-size-fits-all, including health. Eating a raw vegan plant-based diet or starting a yoga regime is not going to fix a congenital heart defect.

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Lifestyle choices can and will impact your health. There is no doubt about that. However, I am sick and tired of that being the sole blame of having health issues. Ableist behavior typically stems from a healthy-ish person who can’t relate or wrap their narrow mind around the idea of someone being chronically ill.

“Maybe if you started working out.”

“It’s probably just stress.”

“Have you tried ________?”

“You’re always complaining about something.”

“You’re a hypochondriac.”

“Have you tried keto?”

“Maybe it’s all in your head.”

“Just be positive.”

“Heal your childhood trauma.”

Thanks to modern medicine and advances in technology, my quality of life has improved drastically. I have a dual lead pacemaker and I take three heart medications. That’s right… I take pills. I am thankful for them. I also take supplements, vitamins, eat clean, and stay hydrated. I also get IV saline infusions in the summertime for hypovolemia to help with dysautonomia. I am thankful for my hysterectomy, pacemaker, four cardiac ablations, and open heart surgery. I tried the holistic approach but it’s not a cure for me. Don’t shame others for not following your views. I am the balance of both worlds with medicine, herbs, surgery, and supplements. Just because I take medicine does not mean I am not taking responsibility of my health.

Stop pill shaming. This toxic berate makes vulnerable people feel shame and guilt about their health as if they aren’t trying hard enough or that it’s their fault. I am sick of the words: truths, journey, healing. Not everyone gets to heal. Some of us are just trying to survive. I commend those who can make a few lifestyle choices and hit the gym to become a new person. However, the shoe that fits that person, pinches another.

Just be open to what you don’t understand. Be supportive. Keep your unsolicited opinions to yourself.

 

Healthy Food

Lavender Lemonade Recipe

Click image to buy this blend

Wild Eclipse can be sipped warm or you can use it to add to lemonade for the perfect lavender infused lemonade that everyone will love. The herbs selected are also calming and relaxing, with other beneficial properties.

 

Lavender Lemonade Recipe:

In a large pot, bring 4 cups of water to a boil and simmer, mixing in a half cup of organic cane sugar, add an ounce of maple syrup. Add two heaping tablespoons of Wild Eclipse and turn off the stove top to let infused simple syrup steep. 

Squeeze 1.5-2 cups of lemons. Strain simple syrup with a cheesecloth. Pour in pitcher and add ice until ice stops melting. Pour in lemon juice and stir. Serve cold. 

Health

Tinnitus

Tinnitus is a symptom of an underlying condition in which you hear ringing in the ears.

Silence for me is not silence at all. Silence means more noise. The ringing, it’s like a symphony of tones all at once. The infinite pitches echo forever. Everything is louder when it’s quite. Sometimes the ringing is so loud that it feels like my skull is vibrating. I also hear the blood rushing through my veins. Whoosh. Whoosh. My brain feels as though it throbs with each heartbeat at times. The sounds keep me up at night. High tones, low tones… all at once, in the darkness.

Once I begin to drift to sleep, I am jolted by a skipped heart beat or wake up to the fact that I am clenching my jaw (unintentionally from chronic pain), or because I will soon have to get up to pee for the 10th time.

The clock reminds me how much I am failing at getting a good nights rest. Buzzing, whooshing, ringing, thumping: the chaos that no one else can hear but me.

Health, mental health, Unveiling Invisible Illnesses

I Am Not Strong

I am not strong.

I am not this tough, battling warrior that some may see me as. I am scared. I am depressed. I am angry. The cards I have been dealt leave me no choice but to try to roll with the punches. I may do so gracefully on the outside, but on the inside I often find myself questioning, “why?” as I carry around the grief of living with a chronic illness.

Every day I wake up in pain and discomfort. Some days it is just my normal everyday life and I accept and move on. I get up and start my day, tucking the pain away. I ignore my reality of a failing heart and the dozens of risks that hang over my head. I sweep under the rug all of my nervousness and worries and I focus on what is good in my life. People think that may be admirable but really, it isn’t healthy. Also, what other option do I have?

We are always told to focus on the positive, while ignoring the dark and negative aspects of life that exist for all. For me, the only way out is through. Acknowledging and dealing with the darkness is healing. Society teaches us to suppress ourselves and our feelings, which leaves us depressed, hiding behind a smile. We are pressured to be put together and strong no matter the circumstances.

Other days, when I wake up, I can’t tuck away the pain. I can’t pretend that I don’t have this horrible genetic condition that eats away at me, that I forever have to live with. I look in the mirror, before my exhaustion is covered up with makeup, and I see how how hurt and tired I really am. I see how sick I look. I begin to hide it, first with my morning meds and then with makeup. I cover it all up. Some days are easier than other, but also some days are unbearable.

You wonder how I am so busy? I have to be. I have to keep myself so distracted because the moment I sit down and stop moving, I feel it all: mentally and physically. When my mind has no distractions, I cannot help but feel the storm come. I think about, “what if I die?” and “I am so sick and tired of being sick and tired.” It’s not fair. My mind will go into dark places. And I just have to tuck it away. I have to “be strong” because that is what everyone wants to see, right? No one wants to see someone complain or pity themselves.

I don’t give up because I fight for my kids. I fight for my husband and my family. I fight for others that may one day be in my shoes. I fight for advocacy and healthcare equality.

I still have someone in my life who haunts me, tells me how much of a burden I am. “You always have something wrong with you. I can’t keep up with all your surgeries. What, am I supposed to carry around a calendar?,” he screams over the phone just 5 minutes before surgery, due to a delay and miscommunication in last minute changes (with the schedule with our child). Sometimes I let the past (and ongoing) emotional abuse of this ex get to me. I find myself questioning how much of a burden I am to others. This is often a question the chronically ill deal with. There is always someone without empathy that has a heartless opinion about you and your health.

Then, you have those “healers” who have the cure for you. “Try this holistic approach if you want to cure yourself and be free of illness and magically live healthy forever.” Apparently these people don’t know that I already eat a strict, clean diet without preservatives, dyes, additives, artificial ingredients. I am a certified herbalist. I don’t drink alcohol or caffeine. I take herbs and supplements. I am very knowledgeable on natural remedies, which I use for most ailments. What people don’t understand is that their basic education does not cover a vast amount of information on the human body. Sure, you can change your lifestyle, diet, and start supplements to reverse or mend many issues. But at the end of the day, it is not going to fix my heart and it isn’t a one size fits all answer. My heart is anatomically unable to be altered by herbs. This isn’t a lifestyle thing, stress or cholesterol induced issue. PLEASE FUCKING STOP sending your unsolicited “cures” to me and others. It is absolutely horrifically disrespectful and insulting.

——

It’s currently noon. My neck is stiff and I have yet to brush my hair or teeth. I glare at my heart meds on the dresser that I still need to take. My back is in pain, spasming and out of place. I am dizzy and know that my heart rate will shoot up and my blood pressure will drop as soon as I get up. Nausea and headache to follow, as I hold onto something to keep from falling. But, I will put myself together. I will suck up the pain, anger, frustration, sadness and make myself look strong with a pretty dress and red lipstick.

But I am not strong.

This is just my life.

mental health

Phobia of Cows

Psychological disorders are mental processes connected to distress or trauma, behaviors, and impaired functioning. Phobias are the fear of an object or situation. My entire life growing up, I had an intense fear of cows. Yes, cows: the fuzzy fat creatures that are completely harmless. I never understood why, but I knew cows triggered my anxiety when I saw them. In a psychology class that I took when I was 19, I learned that phobias can be triggered by an event, having a source that causes the irrational fear. When thinking back into my childhood, I remembered that when I lived in Missouri we lived on a highway and had cows on our property. One evening a cow got loose and ran into the busy highway. My parents and brother ran outside to the road and suddenly a large semi-truck slammed on the brakes after hitting something. I remember falling to ground screaming, thinking the truck hit my family. Unfortunately, the cow was hit but fortunately, my family was fine.

Looking back, it doesn’t seem like an overly traumatic event as an adult. Everyone was fine, right? However, as a child, it was very traumatic. Learning that this event had caused me to subconsciously fear cows inevitably cured my phobia. Cows were suddenly not so scary anymore. Understanding the source of your anxiety or phobias can help manage your mental health by learning what your triggers are. Working with a therapist can also help with coping skills and the tools you need to get through stressful situations.

 

Links:

https://www.mhanational.org/conditions/phobias

News

Hurricane Dorian: Florida Life and How To Prepare

There is such a unique feeling that comes with being a Florida resident. Maybe it’s the adrenaline, the excitement, a little bit of shock, and whirlwind of emotions. Feelings come in waves, like the angry sea ahead. One moment, we are laughing and shrugging it off. Then there are times when we get a bit nervous. Will we run out of gas and water? Will my home be safe? Am I in a flood zone? Do I have enough batteries?

The uncertainty of the storm is also an impending storm within ourself: the sky is always the bluest, with true Florida sunshine warming our backs while we cannot see what is coming for us. Rumors and guesses pour in like rain as we listen to the latest forecasts. The storm’s movement dances, teasing us and growing stronger.

The shelves dwindle as we run into our neighbors and wish each other luck. Tick tock, the clock counts down and the hurricane creeps closer. Businesses and homes board up their windows during the calm before the storm.

Whether you are a hurricane pro and Florida native or a storm newbie, preparation is very important. Even if the storm isn’t a direct hit, you never know if it will make a sudden and unpredictable turn. Even outer rain bands can cause damage and/or flooding. ALWAYS be prepared.

Hurricane Preparation Tips:

  • Fill up your gas tank and keep it full. You never know if you may need to change plans and evacuate, or when gas will be available after the storm.
  • Losing electricity is likely. If you don’t have a generator, it’s a good idea to eat the food in your freezer to reduce the amount of food that may go bad after days without power. Fill up the freezer with ice. Stock up on non perishable items and food items that can fit in a cooler.
  • Stock up on water or fill containers with water. Water lines typically get shut off so have drinking water and water for cleaning, washing your hands, etc. You can fill the bathtub and washer with water as well to use for flushing the toilets. It doesn’t hurt to stock up on baby wipes to freshen up if you can’t shower.
    Be sure to have all your medications filled. You don’t want to run out or discover you are low when everything is closed and you are stuck inside or out of the area. This includes medication you may not take daily, like anti-diarrhea, aspirin and home remedies.
    Share your plan with friends and family so that people know where you will be. Cell towers don’t work well after a storm hits so making calls may not be an option for a moment, and without electricity your phone may be dead. Check on neighbors and elderly to see if anyone needs help.
    Don’t forget the pets! Make sure they have plenty of food as well.
    Get gallon size ziplock bags for important documents. This also comes in handy for keeping food from getting soggy as ice in the cooler melts.
    Get a battery operated radio to listen to updates. Make sure you have other essentials: toilet paper, paper plates, lighters, batteries, candles, bug spray, etc.
    Know your local resources: shelters, emergency management, local updates, resources.
    Have cash handy. Once again, without electricity there are no debit/credit card machines. When stores reopen they may be cash only.
    Do not run generators indoors
    If you will not be home, fill a cup of water and freeze it. Then, place a quarter on top. If it is at the bottom of the cup, that means you lost power and your food is bad.

Links:

Health, Unveiling Invisible Illnesses

Why I Am Going Out of State for a Doctors Appointment

 

After seeing a neurologist for about nine months, we came upon the solution for me to see a different neurologist, in the same office, since my doctor felt she couldn’t help me. Her specialty was migraines and seizures and she was not familiar with the dysfunction of the autonomic nervous system. I felt it might be easier to stay in the same office since maybe the two doctors could communicate or have access to more information, rather than leaving the practice altogether.

 

It has now been a little over a year with my newer neurologist. In this year, I have seen him every month at times. One appointment was to order an MRI without contrast to rule out certain diagnoses. Then, the next appointment was to follow up on that test and to order something else. It felt like it dragged on and on, leaving me to wonder why everything wasn’t just all tested at once. I could sense the uncertainty, and while he admitted that he isn’t familiar with dysautonomia, he sympathizes and ensures that he will help somehow.

 

The first neurologist ordered an EEG and she said everything was delayed but showed no signs of seizures; this was likely due to bradycardia. This was two years ago, before my pacemaker. After leaving that test, my heart rate dropped and I passed out in the hallway. Fortunately, I had a heart monitor on at the time and called my electrophysiologist and explained what happened. They looked at the episode and determined my heart rate plummeted.

 

Now, two years later, my new doctor decides to do another EEG. I find myself nervous, wondering if the testing triggered my episode last time. But I also find myself frustrated and here’s why: two appointments ago, my neurologist said that my (dysautonomia) episodes sound like seizures. He offered me seizure meds and I quickly declined. I avoid medication unless absolutely necessary or given a proven diagnosis. I stated that I would never take meds for a guessed diagnosis and that I was sure these episodes were a result of autonomic dysfunction, or dysautonomia, which had also been diagnosed by my electrophysiologist. Dysautonomia is common with Ehlers-Danlos patients. He admits again he is not knowledgeable in EDS or dysautonomia. “Let’s just try another EEG.”

Keep in mind that there are 12 million misdiagnosis per year. Having a complex illness makes it tough to get proper treatment and management due to the lack of knowledge in rare diagnoses. As a patient, it can be hard to walk away because we feel almost desperate to get care but also hopeful that we will make progress over time; maybe the doctor will come around, research, or learn more. Starting over is time consuming and you already put in so much…just like a relationship. Sometimes hope keeps us there longer than we should stay.

 

Finding a specialist (there are only three clinics in the country) that specializes in Autonomic Dysfunction for me is a must. Looking back, the last two years was a waste of time. The last two years, my diagnosis was never understood by my doctor, nor will it ever be. I was nearly fitted into his specialty of seizures, only to be added to the 12 million misdiagnosed, because that was his specialty. That was what he was comfortable with. Any many patients would have trusted his judgment, taken the pills and felt they were being cared for. Not me.

 

As I leave from my EEG test, I know that it may be the last time I come to that office. I chose to humor my doctor and myself with the test because it never hurts to rule out a diagnosis (again). I know that months from now, I will travel outside of the state to see a doctor that truly understands what is going on with my nervous system. After spending my entire life having notes in my medical records of “unusual symptoms” that no one could piece together, for the first time ever I will have a doctor that has that missing piece of the puzzle.

mental health, Podcast

How To Work Through a Problem – Listen Now!

Podcast Link

Hello! This topic is important to me because so many of us go through life struggling and stressed, never learning the proper tools to work through an issue.

The original post How To Work Through a Problem has inspired the topic for episode 5 on my podcast, The Misti Blu Days of Our Lives.

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