Health, Unveiling Invisible Illnesses

Dysautonomia International Education Day

Dysautonomia International Education Day in Clearwater, Florida 11/09/2019


The Education Day in Clearwater was great. I definitely would love to host a local (Brevard County) get together soon. I would love to have more time to talk and get to know the other warriors. Here was my quick take on everything:

It was pretty cool to hear that 30 different universities are currently studying dysautonomia. Lauren Stiles said the push for research funding comes from us patients wanting answers. It is assumed that 1-3 million people have POTS. Dr. Laura Pace (neuro gastric MD) says “we need to treat the cause, not the symptom.” Amen! She also had an amazing point that some of us (especially with Mast Cell) can develop eating disorders as a protective mechanism from symptoms. She had a case of a young girl that was diagnosed with anxiety and eating disorder but after Pace’s testing, she actually had severe gastroparesis and POTS. She is a huge advocate for the Smart Pill.

Dr. Raj was awesome! He was very funny and witty. He had pointed out that many patients do better on low dose beta blockers vs. the typical higher doses that are prescribed. I completely agree as my doctor originally had me on a very high dose, which bottomed out my bp and made my heart even more tachy. I do much better with low dose. Dr. Raj also briefs The Faces of POTS journal (2019, B.H. Shaw, L.E. Stiles, et al.) and points out that 89% of patients missed school, 28% were homeschooled, and 25% dropped out of school as a result of their POTS (B.H. Shaw). Dr. Raj recommends exercise tips, suggesting every other day or 4x per week for 30 minutes. He suggests if you are done and quit in 13 minutes then you need to go slower, pacing yourself. He does not suggest upright exercises. Behavioral therapy is also important in dealing with chronic illness; Dr. Raj states, “ultimately people have different strategies for learning to cope.” Yoga, therapy, SSRIs, mindfulness etc. are different options in coping (2019, Dr. Raj).

Dr. Laurence Kinsella (neuro) had great recommendations for CBT (Cognitive Behavioral Therapy) to help with coping. I also love that he mentioned “symptom snowball” which makes diagnosis tricky because of the long list of symptoms that we have. He discusses the longterm effect of meds used for migraine treatment and suggests Migreleif as a holistic approach, along with an elimination diet. He also suggested a free course to help with sleep management: free mindfulness course.

It is great to have a community driven for change, giving answers to the patients and education to health care providers. Dysautonomia International is not only raising awareness and providing education, but they are advancing medicine in a grey area that leaves millions in the dark. They are shedding light and discovering much needed answers, with much more to come.

Print Outs:

10 Facts About POTS

What is Dysautonomia?

10 Facts About Dysautonomia

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.

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.

Health

Open Heart Surgery

Yesterday I met with my heart surgeon from 2011, as I have followed up with him every year, then every 6 months. Yesterday he told me it was almost time. I will need surgery before symptoms worsen and I become short of breath with an enlarged heart.

In 6 months, I will have another open-heart surgery. This time it will be the replacement of my aortic valve with a tissue valve and to shave away the muscle that is over my coronary artery (myocardial bridge). At the end of the month I will be having a heart catheterization, where they thread a catheter through my vein to my heart. They will measure the pressure of the artery and get a good look at my aortic valve.

During open heart surgery, the sternum is cracked open and the the beating of the heart is temporarily stopped while maintaining life through a cardiopulmonary bypass (the heart-lung machine). I will stay in the hospital approximately 5 days and it will be about 6 weeks until I feel better, and 6 months until I recover fully. Though I knew this day would come, I am grateful I have until April/May to wrap my head around it.

I will never understand why I have had to go through so much in my lifetime, but I can only hope that it’s to help others.

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

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
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!