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

Mayo Clinic Update

We are done for the day and just had the evaluation with the cardiologist. In a nutshell: it takes a village. My aortic valve is slightly worse but my heart isn’t in bad shape to need surgery YET so that is great news, for now. However, I did have an elevated NT-Pro BNP which is indicative of heart failure but ever so mild and more to be used as a baseline.

I will be back September 5th for more tests. I will finally get my cortisol and metanephrines tested. I will have a CT angio and a 7 day heart monitor. The role for this doctor will mainly be to monitor my heart valve. We are ruling out any other structural abnormalities and then this information will be very helpful to the new neurologist that I will be seeing out of state in Arizona, unless Nashville opens up (first choice). The answers I am mostly looking for will be there, to better understand and treat my dysfunctional nervous system. The full genetic sequencing is another piece of the puzzle. There are a lot of pieces.

The valve is one issue but my nervous system is what causes the other heart problems, as well and many other issues. This is an ongoing process. It’s is an up an down roller coaster. At times, I am excited to get answers and the Cinderella hopefulness to find a way to magically be better. Oftentimes I find the sinking feeling of reality and logic settling in my stomach that there is no cure, just management. It’s impossible to accept and why I still try to search for more answers.

My health is like a domino effect: one issue causes another, then another… There is such a huge list of issues connected to connective tissue (disorders). This also makes it difficult to understand and diagnose, because it’s essentially a giant cluster fuck.

I will always continue searching because science advances, awareness spreads education, and advocacy feeds it all. I will continue to fight for myself but also for the future of others that will stand in my shoes one day. I hope the darkness in my life fuels the light that other seek.

Thank you for listening and for your support. Feel free to subscribe or to reach out if you ever need any help. It is my passion to lead other patients in the direction they need.I know exactly what it feels like to be lost, medically neglected, and dismissed.

Helpful Links:

http://www.dysautonomiainternational.org

https://www.ehlers-danlos.com

https://www.healthline.com/health/mast-cell-activation-syndrome

The Invisible Diaries

https://vimeo.com/292473119

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
Tips and Tricks

Building or Repairing Your Credit Score

When you have a bad credit score, it can be disheartening and frustrating. Having chronic illnesses my entire life has made it a struggle to have a decent score. I let accounts go when recovering from health issues and being out of work from surgeries. However, I also never tried to fix them until recently. Part of me thought, “What’s the use?” I was wrong; it was not impossible and you can still make an effort. Plus, we want to buy a house and you cannot do that with shitty credit.

First, you want to monitor your score. I downloaded the Credit Karma app, a free app that allows you to monitor your credit for free. You don’t want to have to pay for your report and you also don’t want a hard inquiry, which can affect your score. So, keeping an eye out with Credit Karma is ideal. Also, try to avoid bills from making it into collections. If there is a bill you can’t pay, call and explain your situation. I call the hospital once a month and pay $5 towards a bill to keep it from going to collections. They don’t like it but they can’t say no.

When I started my journey last year, my score was under 500. I had several collections and truth be told, I never really paid attention or cared to keep an eye on my credit. I truly believe that this should be a lesson in high school, but that is another topic for another day. First, I started with setting up a payment plan for my school loan. I had paid off a loan entirely and didn’t realize I had another school loan in default. Oops! After 9 months, I was out of default with consecutive payments proving my responsibility. This did not necessarily increase my score but it removed a collection from the derogatory marks. It is not always about the score, which is important, but also about how many items are in collections.

I had several derogatory marks. One was an $850 collection I had; I called and set up a payment plan to pay it off in about 8 months. It feels good to settle debts and see your collections disappear. Again, this did not increase my score much but it helps the other areas that are looked at when your report is pulled.

My absolute favorite way that I increased my credit score was with an app called Self Lender. This app has increased my score more than anything else I have tried and it is also a great way to save money. I downloaded the app and chose the second plan. The first plan is $25 per month for two years but I chose the $48 per month for one year. This plan increases your score a little more that the $25 one, in comparison to my husband who chose that plan. Basically, you (self) lend to yourself and it reports and builds credit! At the end of the year, I will get the money back that I paid into the account while I successfully increased my credit. I went from 500 to 600 within 6 months!

Another option is opening a secured credit line at your bank. Many banks offer $200-$500 limits. My husband set his up at my bank for $300 (their minimum). You treat it just like a credit card, only it is your money. You don’t want to max it out. Just use it for small things, like gas or lunch. Aim to keep your balance low and pay it on time, otherwise you are defeating the purpose and it could lower your score. I opened a secured credit line with First Progress. It is linked to my bill pay on my online banking app.

Making a list of what you need to improve is also a productive plan for fixing your credit. Occasionally people have had derogatory marks or collections that were not accurate. My husband had a collection that was a duplicate. Combing through everything is a way to ensure that everything is accurate. Disputing anything that is wrong is simple and also easy to do through the Credit Karma app.

The Fair Credit Reporting Act promotes the accuracy, fairness and privacy of consumers. Basically, the credit bureaus have 30-45 days to resolve a dispute. It never hurts to try. Another thing you can do, is call the actual creditors and set up a payment plan or negotiate price to pay off the debt. If an account status is closed or a charge-off then paying it off is basically useless, so focus on the open collections. Keep in mind that collection agencies buy debts for cheap so you can negotiate. If you hassle them back and say that you only can pay $70 for your $150 debt, chances are they will accept that or something close. I had a friend recently tell me that she haggled a $10,000 debt down to $800 pay off! Keep in mind that they will want that in one payment. Make sure you ask when it will be reported and for a letter as well so you can follow up on your credit report.

I had a 2014 lease broken in Missouri and they were going after me for $8,758. That was excruciating. After months of phone tag, negotiations and frustrations, we finally agreed on a full payment of $3,000. I asked for a debt settlement letter and fortunately they were scheduled to do their monthly reporting to the credit bureau the following day. This was the very last thing holding me back from buying a house, because it was an open collection and at that price. If I had the time, I could have set up a payment plan and after 6-9 consecutive payments, it would have shown I was working towards paying it off. That works too, but we are trying to buy now and didn’t want to renew our lease another year.

Another cool way to give yourself a boost is through Experian. They have something called Credit Boost that links your utility payments. It added my phone bill and electric bill and I got an 8 point boost!

Now that you have a better understanding of some tips and tricks, you can continue to improve your score and create responsible habits that will keep your score up. Though I still have work to do, I know each month my score improves and that it doesn’t happen overnight or all at once. Be patient and vigilant.

Recommendations:

Our mortgage guy, Roy

Our Realtor

Health

Ehlers Danlos Syndrome and Hearing Loss

Ehlers-Danlos Syndrome can cause a defect in the sound conducting mechanism of the middle ear, and which may result in hearing loss. My “good” ear has been crackling and feeling less good. I see an ENT regularly and have shown a steady pattern of loss in both ears, predominantly my right ear.

What seemed like a normal follow up to see why the tinnitus and crackling has worsened in my better ear, ended up in receiving some surprising news.

My last hearing test was just 6 months ago and it is evident that there has been progressive loss. My doctor said she would not usually advise hearing aids at this level yet but considering EDS and the obvious progression, her opinion is to start now before it gets worse.

Today is one of those days where I feel just completely defeated by my body. The idea of hearing aids at my age…. but I will rock them. My purpose here is to help others like me to feel beautiful, strong and supported. So, I am taking another hit for the team.

Anyone else out there have hearing aids?

Health, News

Lower Health Care Costs Act

Committees play out the regular duties of congressional lawmaking, which have not changed much in more than a century. Committees decide which bills move forward to consideration by the House or Senate as a whole. Senate committees vary from banking, armed services, agriculture, natural resources and so on. The Senate divides work between standing committees into subcommittees. Senate committees monitor on-going government operations.

Health, Education, Labor, and Pensions is a committee under the U.S. Senate with a total of 23 members. The Ranking Minority Member is Patty Murray and Lamar Alexander as the Majority Chairman. There are three subcommittees: Children and Families, Employment and Workplace Safety, and Primary Health and Retirement Security. June 18th was the recent full committee hearing on Lower Health Care Costs Act. Senator Alexander begins the meeting with a startling statistic that “up to half of the 3.5 trillion, the U.S. spent on healthcare in 2017 was unnecessary.” This tapeworm on the American economy is the biggest financial problem facing American families. How do we reduce what the people pay out of their own pockets from primary care to prescription drugs?  Some suggestions are to end surprise billing, more transparency, require patients to be given more information on the cost and quality of their care, and to increase prescription drug competition.

Senator Murray and Alexander are working on bipartisan bills along with other committee members for this  Lower Health Care Costs Act of 2019. The debate about lower cost health care is always an ongoing debate. This 2019 act will provide Americans better options in healthcare. This topic is very important for our country, as many people are unable to afford healthcare. There are people who have no choice but to ration life-saving medications, such as insulin, due to irrational price markups. Issues like this are killing people.

“A functional market does not regularly drive families into bankruptcy.” – President and CEO of Nonprofit Pacific Business Group on Health, Ms. Elizabeth Mitchell

Our healthcare has become a luxury, enabling anti-competitive behavior with consolidated markets in an industry that has a patient’s interests last. This bill can help mend a broken market, where a majority of citizens rely on crowd-funding to treat illnesses.

“Half of the public cannot see a doctor when they need to because of healthcare cost.” – Mr. Isasi of Families of USA

*Watch the June 18th, 2019 meeting to listen to more information about this Lowered Healthcare Cost Act

Travel

Wanderlust: Gainesville, Florida Favorites Guide

Florida is such a great state to live in. Think about it: we live where people vacation. There are many Florida cities that are full of culture, hidden gems, good food and weird fun. Gainesville is the home of the University of Florida. This is not just the home of the Gators and good college football, but a beautiful place to visit and live. Shands is a teaching hospital that is also a home to many specialists. People come from all over to see their doctors.

The first stop I always make in Gainesville is straight over to The Reggae Shack Cafe for the best Jamaican cuisine. They even have vegan options, desserts and a table of hot sauce. The first time I tried their Caribbean style food, I fell in love; Sweet plantains, spicy jerk sauce… every morsel is heaven. The culture is there and the food is made with love.

Even though there is no room in my belly, I walk down University Avenue to their neighbor, Karma Cream. They have ice cream and fresh baked goods. Even if I can’t stay, I at least grab something for the road. My favorite is the vegan peanut butter chocolate.

The Devil’s Den Prehistoric Spring is an underground spring that was once a hidden gem and is now a hot spot in Florida. If you arrive late, expect to wait up to two hours. After you sign in and pay, there is plenty to do if you need to wait your turn. They have a campground, pool, corn hole, food truck and a large property to wander. When your time has come, you get your snorkeling gear that they rent to you and head down the steps to the brisk clear water. You can look up at the sky and greenery, or down below at the rocks under your feet. It is an amazing must-have Florida experience.

Downtown Gainesville has a lot of great restaurants and shops. Restaurants near the college are more Gator influenced with college vibes and Gator games on tv. If that isn’t your scene then head to downtown. During the weekend there are farmers markets, Depot Park, Brunch at Boca Fiesta and record stores to browse. I spotted an awesome vendor, Medusa Moderna at a pop-up event.

Crooked Path Forge is Jordan Borstelmann’s forge for his blacksmithing and bladesmith workshop. Jordan offers exclusive classes for those who want to learn how and make their own hatchet or knives. The classes are small for more one on one crafting and each student leaves with their own finished working knife that will last them their lifetime. Sign up in advance because his classes fill up fast.

Gainesville is a great Florida getaway, with so much to offer. It’s the perfect Florida staycation for a quick weekend trip. I recommend going when there is not a home game or the hotel prices will be much higher.

Our last stop before heading home was the Kanapaha Botanical Gardens. It was a beautiful place to explore. It felt like we were Alice in Wonderland.

Hotel recommendations:

Hom

Hampton Inn & Suites Downtown