Health, mental health, Unveiling Invisible Illnesses

I am not strong

mistibludream

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

mistibludream

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, mental health

Psych Midterm on Obesity

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Abstract

Obesity rates rise more and more each year, impacting over one-third of the American population. Health issues are prevalent in patients with a high BMI, also linking to earlier death. Mental illness can contribute to obesity and obesity can contribute to mental health issues; the two go hand in hand. It is suggested that the body is looked at as a whole, rather than individual units, to see where the domino fell first. The rising dangerous trend in obesity needs careful attention and a solution. With a lack of education, resources, and funds, there is little hope for change. Communities need create resources and advocate for the needs that are not being met.

Obesity in America

Obesity is a condition involving excess body fat, increasing the risk of health complications. Obesity can be influenced from a genetic or behavioral aspect. It can lead to multiple health complications and additional health issues such as diabetes, cardiovascular disease, cancer, and sleep apnea. Eating too much and exercising too little can increase your chances of becoming overweight.

 

food french fries fries catsup
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In the past few decades, obesity has rapidly risen in America, becoming the leading cause of preventable death. It is presumed that $150 billion dollars are allocated towards the obesity burden in healthcare costs per year (2010). Obesity is not just an epidemic in America, but it is a global concern. Studies show that chronic medical conditions and early death are linked to elevated BMI. Fast food and conveniently long shelf-life foods have contributed to the epidemic. High trans-fat foods and poor eating habits are not the only contributing factor. American culture has long ago established habits for large portions, processed foods, high sugar content, additives, dyes, preservatives, and diets rich in meat, carbs, and dairy.

Together, mental health and obesity can create a morbid combination that worsens the other.  Which came first, the chicken or the egg? The same question can often be asked when it comes to mental health and obesity. Stigmatization and bias are experienced in both mental illness and obesity. The risk for developing the other goes hand in hand. There is also an apparent link in the statistics for obesity and disability (Littleberry 2017). The statistic may be influenced by poor diet and little exercise due to low income from being unable to work.

adult biology chemical chemist
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Viewing each patient as a whole is crucial in making an impact. Rather than focusing on just mental illness or just obesity, the entire picture needs to be examined. Emotional fat and physical fat are equally destructive (Littleberry 2017).  Serotonin, a monoamine neurotransmitter in the brain known as 5-hydroxytryptamine, is a contributor to the feeling of well-being and happiness. It is estimated that 90 percent of the body’s serotonin is produced in the digestive tract (Caltech 2015). The human body is fascinating in the way it functions, everything working together to create homeostasis. However, if there is something off or not working properly, there can be a dominos effect. The intestinal tract has its own biosphere with microbes that modulate metabolites, playing a huge role on health and disease. Irritable Bowel Syndrome, Crohn’s disease, Celiac disease, Ulcerative Colitis, and other digestive issues can cause issues with serotonin production.

The emerging field of biological sciences is continuously exploring the link to the digestive biome and serotonin. Though serotonin plays a big role on mental health, there are other nutritional factors that can contribute. Having low vitamin D, for example, can cause symptoms like depression. Vitamin B deficiencies can contribute to anxiety. According to the Mayo Clinic, obesity can increase many health issues, which include gastrointestinal issues.

The highest rates documented from American Medical Association are in 2018, approaching 40% of Americans being obese, with Mississippi and West Virginia being the highest rated. According to the American Diabetes Association, high-income countries are associated with higher obesity rates, whereas in America it is the opposite. In America, if a person has low income, chances are fresh and healthy food options are not affordable. Organic healthy food options are far more expensive than processed nutrient-dense food choices.

men and women standing infront of dining table
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Another factor to consider in obesity trends is nature vs. nurture in the sense of obesity in families. While genetics can play a role, so can intermediate family culture. Food choices, traditions, and styles are passed on from parents to their children, and so on. A meal can be considered comfort food because it is comforting; perhaps the meal is associated with a memory of being cared for by a loved one while sick. This begs the question: if a family who historically ate rich in carbs and fats were hypothetically raised to eat fresh healthier meals instead, would their weight have been affected had they been in a different culture, setting or environment? Do we pass on a particular gene or do we pass on the traditional family eating habits and food culture?

There are several ways to work on losing weight. Some are invasive, difficult, and hard work. Losing the extra pounds is well worth the result and will reduce health issues. Bariatric surgery is a procedure performed on patients with obesity by reducing the size of the stomach. This created the feeling of being full. Many high-risk patients are having bariatric surgery in order to lose weight. Mental health counseling is a great way to dive into what may be causing a person to over-eat or turn to food to cope. Some cases of obesity can be linked to trauma. Lifestyle change is an important part of reducing BMI, even if other methods are used to treat obesity. Lifestyle changes can keep the weight off and encourage healthier behavior long-term. Changing old habits that may have contributed to gaining weight is also important for the future generations, as habits can be learned and passed on.

vegetables stall
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It is crucial that the numbers and rates of obesity do not continue to rise, but lower. If Americans take a grassroots approach to changing the rising obesity risk, there may be more hope. Communities can help by offering fresh, healthier foods at food pantries. Crowd sourcing and funding could benefit low-income families by creating local programs that offer discounted or free fresh foods. Local community gardens with fresh produce would be a great community service or volunteer program that also provides families fresh produce. The community could also offer free healthy cooking classes and education on diet and lifestyle modification. Free local exercise programs should be offered to people of all ages to keep the community active and fit. Many gyms and fitness programs are unaffordable, even to the middle-class families.

 

Link with references:

Obesity in America

 

Health

The October Slide: Chronic Illness in October

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October is such an amazing month, but it is the start of another season other than Fall. It’s sick season! Illnesses increase and the chronically ill are greatly affected, sometimes ending up in the ER. Here’s why:

  • School is in full swing
  • Cold and Flu season
  • Darker days = reduced vitamin D
  • Low barometric pressure
  • Reduction in exercise routine
  • Increased asthma and allergies
  • Seasonal depression
  • Cold weather causes vasoconstriction, reducing blood flow and can be an issue with people who have previous constriction.

It is important to stay hydrated, frequently wash your hands, and take supplements to prevent deficiencies such as vitamin D. Low D can cause aches and pains, depression, and a weakened immune system. Vitamin C and Zinc can boost your immune system as well. Giving your body the best environment is helpful for preventing health issues over the next few months.

As the weather gets colder, we tend to exercise less. Lifestyle changes such as finding a new exercise routine in the winter and paying attention to your diet can help reduce health problems.

If you are sick, please stay home or wear a mask. Your germs could put someone in the hospital if they are chronically ill, elderly, or a patient with cardiac issues. Be considerate of others.

Self-care is a must. Now that you are reminded of the additional risks of health complications, I hope you prepare for the season and stay healthy.

*Disclaimer:

This blog is not to replace medical professionals. Always talk to your doctor.

mental health

Phobia of Cows

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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

Health, Unveiling Invisible Illnesses

Sweet Dreams with an Invisible Illness

mistibludream

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.

News

Hurricane Dorian: Florida Life and How To Prepare

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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

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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

mistibludream

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.