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 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 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.

Please be sure to subscribe and leave 5 stars so that others can stumble upon my podcast and blog! It is available on Spotify, iTunes, and iHeartRadio, or you can listen on the RSS feed link.

Health, Healthy Food

Morning Routine Smoothie

The kids are back in school, and so am I. I love the break in the summertime but I really thrive on routine. I gained a little extra fluff in the last few months from sleeping in, overeating, and going out to eat too much.

With everyone back in school, I am forced to plan ahead for meals. Having a smoothie in the morning is perfect for me since I am not really hungry yet. This smoothie recipe is full of nutrients and has vegan protein, which will get me through my first class. The mushroom blend helps with focus, energy and stress. Lion’s Mane is my favorite mushroom because it repairs nerve damage.

Oat milk is loaded with calcium, potassium, iron, vitamin A and D. It is known for improving immunity and gut health as well as lowering cholesterol.

Healing Sprinkles is an anti-inflammatory healing blend with minerals and vitamins. I need all of that! Having this smoothie in the morning is the best way to start out my day. Having gastrointestinal issues due to Ehlers-Danlos Syndrome has caused me to have deficiencies. My tank is always on empty so this is a great addition of my routine that gives me a little boost.

What’s in it?

  • Ice
  • Banana
mental health

What Anxiety and Depression Feels Like

Anxiety is not being nervous over a big presentation at work. It’s not the butterflies in your stomach while you stress over what to wear. It’s not the feeling of having a hard time because you have too much on your plate.

Anxiety is a wave that towers over you, consuming your entire body. You tremble and shiver, your throat closes up and your palms sweat. Your heart races like a hummingbird. Many times it can be for no reason at all. It is out of your control. Your body is temporarily not yours. A state of panic sets in and you feel like you might die. Anxiety is neurotransmitters out of balance. It is the feeling of melting into quicksand. It’s feeling as if something terrible is about to happen. It feels as if you are about to implode.

Depression is not feeling bummed because you had a rough day. It’s not feeling sad because things didn’t go your right today. Depression is not being sad about that mean comment someone made towards you. It is not something that you can just suck up and get over. It is not cured by a simple attitude adjustment. It is a thick heavy blanket that drowns you. Sometimes it is devastatingly painful. Sometimes it is pure numbness, and other times it is the feeling of doom buried deep within you. It is like you are grieving the biggest loss you have ever felt. Even when the sun is shining and the sky is blue, this feeling can sink you. Oftentimes there is not even a reason. It’s like you’re missing a limb. Something is missing but you can’t place what it is.

Anxiety and depression does not make you weak, nor does it mean that you are weak. Mental health disorders are greatly misunderstood by a majority of society. The stigma must end and something needs to change. Generations are losing many to this epidemic. Addiction grows from mental health disorders and the need to self-medicate to escape from suffering.

My Amazon Recommendations

Little ways to make a small difference:

  • Listen when someone needs to talk
  • Don’t tell them it will “get better” or to “suck it up,” as these are dismissive comments that are not helpful
  • If you don’t understand, then try to empathize
  • Toxic positivity can be harmful. Pretending to be okay is not productive or healing.

National Suicide Prevention Lifeline

Call 1-800-273-8255

Available 24 hours everyday

Unveiling Invisible Illnesses

If I Only Had a Heart

The #myedschallenge for today is “if you could rid yourself of one EDS symptom, what would it be?

Without a doubt, I would rid myself of heart issues. I will gladly take the pain, muscle aches and spasms, joint hypermobility, subluxations, migraines, gastrointestinal issues, brain fog and so on. I have always known my life with heart issues.

I remember playing on the softball team in 3rd grade, complaining of my heart racing. “Keep running, kid. That’s normal,” my coach said. It wasn’t until I was 15 when we realized my heart rate was hitting the 300s and I had SVT and WPW. I remember being in my 20s and dancing with my friends, periodically going to the bathroom stall to slow down my heart. I just wanted to be normal.

Between multiple surgeries, hospitalizations, ER visits and doctors appointments, these heart issues have robbed me of so much of my life. These heart issues affect me every day.

My heart valves leak and have hypertrophied, requiring an inevitable 2nd open heart surgery one day. I have already had 4 cardiac ablations and refuse to do a 5th as it would make me 100% pacemaker dependent. My aortic root is dilating, a common issue with EDS. While I worry about my heart rhythms, blood pressure, arrhythmias, and valves, I also have worry about the possibility of aortic dissection.

I put my hand on my heart, and though battery operated, I am still so grateful that it pumps. I am grateful that I am here to be a mother and a wife, to share my story, to raise awareness, advocate and educate. I am grateful to breathe in the warm Florida air, even while my heart races and my chest aches. But what I wouldn’t do for a healthy heart….

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!