College Life

The Ones Who Walk Away

*This post was written and inspired by one of my Composition II assignments. You can read The Ones Who Walk Away from Omelas by Ursula K. Le Guin by clicking on the link. 

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Photo by Brett Sayles on Pexels.com

The seemingly happy city of Omelas depends on one horrible thing: the suffering of an individual. As the city gathers together to celebrate their annual Summer Festival, below the city is a child that is locked away. At one point or another, citizens learn about the truth of the miserable child. When they do, they can decide how they respond but most continue to go on with their day. This ugly flaw of Omelas is that the citizen’s happiness lies on the hidden truth (a tragic secret). To live in a peaceful and seemingly perfect town just to discover that a child is held hostage in a basement closet, living in poor conditions, shatters the ideal image of the town. The society’s principles of happiness are founded on the suffering of another human being. The short story allows you to morph your perspective in order to dive into a deep thought: can happiness exist without the extreme opposite? How do the two emotions relate? Since the child has once experienced happiness of his or her own at one point, the child can reference the difference between happiness and suffering. You can compare and contrast the city above celebrating merrily, to the child below that is alone in misery. Those celebrating the festival are all aware of what their foundation is build on. The citizens can turn a blind eye and accept the cruel reality or the can reject Omelas and walk away.

It is revealed that the citizens of Omelas learn about the truth of the child being locked away. No one does anything to help the child despite learning the truth. I think it is important that people are aware of the child’s imprisonment and misery because the story is written to make the reader question their own society. Wherever we look, there are always flaws or injustice in society, or life in general. When you think about politics, even religion, and any form of organization you will find cracks in the foundation. There is always an imbalance. In the 2001 movie Vanilla Sky, a quote forever stuck with me: “Just remember, the sweet is never as sweet without the sour.” What that means is that you cannot appreciate one extreme without knowing the other. Sweet isn’t sweet unless you have had sour. Though this does not ever justify the horrible treatment of the child, I believe the narrator is asking the reader to relate to this symbol. The society as a whole collectively neglects the child by doing nothing because they know they are powerless when it comes to changing the foundation of Omelas. If the citizens didn’t know the truth, the story would have a different meaning. In this 1973 short story, the child exists symbolically.

The child represents the elephant in the room, in many situations. For example, our healthcare system is one flaw in our society. Many people enjoy their privilege to have healthcare while others don’t have the luxury of healthcare. Does half of the nation truly not care about the suffering of so many individuals that cannot afford to seek medical care? Do people truly feel nothing knowing that others cannot afford his or her marked up prescriptions that keep them alive? Not affording insulin, for example, can cause a patient to ration their medication and risk death. I don’t believe that these people are truly evil, but I believe that they don’t want their happiness to be affected in order to save others from the misery that is reality. In a way, those with health insurance justify and turn a blind eye just like the citizens of Omelas. If we were to have healthcare for all, the fairness and even grounds would perhaps not be as comfortable to some, thus leaving them to prefer that others live uncomfortably. Those who are chronically ill, not poor enough or rich enough, or have preexisting health conditions are like the child locked in the basement.

I do believe those who walk away from the good life in Omelas are brave. Those who walk away are making a stand and rejecting their society. Those who walk away give the child a fighting chance. If only everyone were to walk away from the norm, a change could ensue. Though people feel powerless and limited when it comes to using their voice, they are not. As we approach the upcoming election, I am reminded that so many people believe their one single vote doesn’t matter. It does. Even in the past few elections, votes were so close in numbers that they were required to be recounted. What if those who thought their vote didn’t matter actually did vote? In 2016, only 6 in 10 eligible voters voted (NPR). Just think about how drastically the results could have changed if everyone voted. I feel as though changes rarely happen because people are complacent and don’t believe they can create change. Change comes from those who make a stand. Think about Rosa Parks. Had she surrendered her seat to a white man, that pivotal moment in society may not have started an important movement.

The child represents the relation of how the emotions intertwine: happiness and suffering. The narrator had a great vision to tell a story that made the reader think. I do believe the story The Ones Who Walk Away from Omelas is a great story worth reading because it relates to our own society. The reality is that many of us accept horrible and unjust situations because the rest of society does. Think about it: What are you personally doing about sex trafficking right now? What have you personally done to make a difference in child hunger, the opioid epidemic, child poverty, domestic violence, or the mental health crisis? Many of us sit back and go on with everyday life, looking away from the ugly truth. Enjoy your television shows, air conditioning and warm pizza while knowing that so many in the world are suffering. If you don’t want to be like a citizen of Omelas, eating your corndog at the fair, then stop going to the fair and find a way to help the child prisoners of the world. If each and every one of us took a position on an important matter, actively raised awareness, found supporters, and demanded a change, the world might be a little bit better.

 

NPR. (2020). Source from United States Election Project; ballot results from the Associated Press elections API. Retrieved from http://www.npr.org/2018/09/10/645223716/on-the-sidelines-of-democracy-exploring-why-so-many-americans-dont-vote

 

Health, Unveiling Invisible Illnesses

Holistic Vs. Modern Medicine

The ongoing argument forever continues as people debate which is better: holistic or natural medicine? Supplements vs. medications, surgery vs. a holistic approach. Which is the best? The seas part and divided we stand on either side, just like a political preference or religious choice. The sides argue with one another. il_794xN.2012082761_8020

As someone who owns an apothecary shop that offers herbal tea, CBD, and other natural products, I can say that the natural approach is always a great start. However, I don’t strictly preach one side or the other. I believe in the balance of all things. Sure, too much of anything can be damaging but that also includes nutrients. Did you know there is a such thing as nutrient poisoning? Many people are quick to blame everything on lifestyle choices but nothing is ever a one-size-fits-all, including health. Eating a raw vegan plant-based diet or starting a yoga regime is not going to fix a congenital heart defect.

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Lifestyle choices can and will impact your health. There is no doubt about that. However, I am sick and tired of that being the sole blame of having health issues. Ableist behavior typically stems from a healthy-ish person who can’t relate or wrap their narrow mind around the idea of someone being chronically ill.

“Maybe if you started working out.”

“It’s probably just stress.”

“Have you tried ________?”

“You’re always complaining about something.”

“You’re a hypochondriac.”

“Have you tried keto?”

“Maybe it’s all in your head.”

“Just be positive.”

“Heal your childhood trauma.”

Thanks to modern medicine and advances in technology, my quality of life has improved drastically. I have a dual lead pacemaker and I take three heart medications. That’s right… I take pills. I am thankful for them. I also take supplements, vitamins, eat clean, and stay hydrated. I also get IV saline infusions in the summertime for hypovolemia to help with dysautonomia. I am thankful for my hysterectomy, pacemaker, four cardiac ablations, and open heart surgery. I tried the holistic approach but it’s not a cure for me. Don’t shame others for not following your views. I am the balance of both worlds with medicine, herbs, surgery, and supplements. Just because I take medicine does not mean I am not taking responsibility of my health.

Stop pill shaming. This toxic berate makes vulnerable people feel shame and guilt about their health as if they aren’t trying hard enough or that it’s their fault. I am sick of the words: truths, journey, healing. Not everyone gets to heal. Some of us are just trying to survive. I commend those who can make a few lifestyle choices and hit the gym to become a new person. However, the shoe that fits that person, pinches another.

Just be open to what you don’t understand. Be supportive. Keep your unsolicited opinions to yourself.

 

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. Some days are easier than other, but also some days are unbearable.

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

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.

2020 Update: My EP study showed that I have a Myocardial Bridge and high pressure in my heart from working harder to pump. My surgeon suggests aortic valve replacement come May 2020.

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

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