Health, Unveiling Invisible Illnesses

Sweet Dreams with an Invisible Illness

When your bed is your sanctuary, a safe place but some moments steal that from you.

After a long day, collapsing into bed is pure bliss. Your head rests on the pillow and the soft comforter melts over you. As your eyes become heavy, suddenly your heart flutters with each breath. Your chest gets tight, as if someone is crushing you or you swam to the bottom of the deep-end pool. Your left hand and mouth feel like needles and pins while your chest begins to ache. The pain in your left arm makes it impossible not to worry.

You sit up and take slow deep breaths, taking your blood pressure and discovering that it is high. Some moments your blood feels cold as it runs through your body, so you turn on your bedside heater and grab your robe; this isn’t the first time you have felt this way so you know what to do by now. After a few starling palpitations you decide it’s time for emergency medication. You are still trying to prevent going to the ER, where they will simply question your mental health and ask, “are you having an anxiety attack?”

“You’re too young for…”

“No, that’s not common for your age…”

———-

As I sit up, I can’t help but wish my body didn’t betray me so often.

Let me rest.

Let this pass.

Why?

My muscles twitch and spasm throughout and inside my body, like a symphony of fireworks. The ringing [in my ears] is so loud that even as I distract myself with the TV, it still rings louder. Occasionally the chest pain strengthens and waves of vasospasms in my chest put the fear in me of what could happen next. I try lying down again until I shoot up after another intense heart rhythm.

I’m so tired.

Please.

As the meds kick in, I wait to lie back down in fear that another episode will come. One by one, I turn off my heater, remove my robe as my blood circulates better, take a deep breath to see if the tightness has released, slowly inching back into my pillow, and then I drift into sleep only to hope that I wake up to start my day tomorrow.


*From 2017-2019 I went to the ER 54 times. I still continue to end up in an ER once every month. I decided to document/blog (after) an episode that sometimes sends me to the ER; fortunately I was able to manage through it tonight and avoided an ER trip. This is another reason I am grateful that Mayo Clinic found the myocardial bridge, which often causes coronary artery vasospasms at night.

Thanks for listening and learning with me to spread awareness and hope for others that may one day be in my shoes. Never take your health for granted.

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
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

Health

Blu Detox Protocol

Order protocol system here

Blu Detox Protocol

Fasting is a method of restricting food intake and has been practiced for thousands of years. Studies have shown that fasting has many benefits, such as helping to reduce chronic disease by stimulating autophagy. Autophagy is the process of breaking down and disassembling dysfunctional cellular components and recycling or regenerating cells to balance the body or reach homeostasis. Fasting is not suitable for everyone; therefore, you should consult your healthcare provider or doctor to ensure it is safe for you.

Depleting your body of important vitamins and minerals can be dangerous, which is why I do not believe in strict water only fasting. This detoxifying cleanse comes with herbals teas to keep nutrients in the body while continuously boosting the immune system to prevent feeling ill as your body detoxes.

The ideal fast is recommended for 48-72 hours. After your fast is complete, you should avoid eating a heavy or large meal. Break your fast with something light for the first day. Start with clean-eating and small portions. You may also incorporate lemon water throughout the day with your fast, and/or a glass of celery juice first thing in the morning.  Otherwise, the fast should only be limited to the provided tea blends and water. If you have any additional questions, please email me at info@mistibludream.com and please remember that this is not to cure, diagnose or treat disease. Medical disclaimers are located on each packet for legal purposes.

 

You will find three tea packets included in the Blu Detox Protocol:

  • Spring Cleaning is the detox blend that supports the immune system while helping your body to eliminate toxins. This blend is naturally loaded with antioxidants and vitamin C. Have a cup of this tea each day during your detox. You can drink it cold or hot.
  • Revival is an anti-inflammatory blend that helps reduce stress levels, supply your body with nutrients, improves hair and skin health, soothes aches and pains, and helps with digestion. You can drink it cold or hot.
  • Energizing Sprinkles is a greens mix. Typically you could put it in your smoothies, juices or muffin mix but for this fasting protocol, you will mix a spoonful in a cup of room temperature water (can be chilled). This gives you energy while alkalizing the body and also assisting in the detox process. The blend will balance your pH, flush out toxins, sharpen your mind and focus, and boost your energy, all while improving your mood and keeping your electrolytes balanced. This does contain a small amount of green tea so if you cannot have caffeine, please customize your detox by swapping it out for Healing Sprinkles. Healing Sprinkles is not a greens mix but has many nutrients, mood improvement qualities, and anti-inflammatory properties. This blend is usually best in hot water as a tea, with honey and coconut milk (and baked goods, smoothies, and coffee). However, additives and other ingredients are excluded during the fast.

*This protocol system comes with three packets, each providing enough product to last the full three day cleanse. This can also be ordered as a sampler to try the three blends without having to order full sizes.

SHOP!

 

 

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