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

Does Anyone Really Want Space?

When a person says they are giving you space, it’s not actually for you; it’s for them. After isolating themselves from you during a difficult time, they claim that they decided to make an assumption that you needed space. The reality is that they don’t know how to react or be there for you. It’s about them not you.

 

Yes, after something profound happens in your life it can be very difficult to be around people. However, no one truly wants space. We want to know that someone is there. We want to pour our sadness, anger, frustrations or heartbreak out so that we can process it. No, we don’t want to talk right away but we want to know you are there when we are ready. We don’t want to be left alone. We don’t want weeks to go by wondering why you dropped off the face of the earth.

Even if it means leaving flowers at our doorstep, or a cheesy sympathy card, or a random hug, there are subtle ways to be there without actually being there. Food is always an easy way to help or show your love and concern, or by sending loving texts every day. We are going to say no when you ask us if we need anything because we are lost and don’t want our burden to pour onto your shoulders, but when you show up anyway we are forever grateful and it won’t be forgotten.

The people that do show up are usually the people who have been through it too. They understand the grief and the heartache. Or, they are very intuitive and empathic to others. We forever remember those who were there at our worst, not our best.

When a friend fills empty space between you and them, time just slowly drags on while you wonder how solid your friendship was in the first place. It’s lonely and isolating. Friends aren’t supposed to abandon you during the hardest times in your life, but some do. Then, suddenly they pop back in with “I was just giving you space.”

 

Take all the space you need, because other people showed up when you didn’t. As we get stronger and grow through the grief, we move on from your absence.

*If someone does say they need space, it’s just for a damn day or two, not weeks. Don’t make empty promises that you can’t keep or your friendship will forever have a painful scar. Never, ever make assumptions.

 

Health

Tinnitus

Tinnitus is a symptom of an underlying condition in which you hear ringing in the ears.

Silence for me is not silence at all. Silence means more noise. The ringing, it’s like a symphony of tones all at once. The infinite pitches echo forever. Everything is louder when it’s quite. Sometimes the ringing is so loud that it feels like my skull is vibrating. I also hear the blood rushing through my veins. Whoosh. Whoosh. My brain feels as though it throbs with each heartbeat at times. The sounds keep me up at night. High tones, low tones… all at once, in the darkness.

Once I begin to drift to sleep, I am jolted by a skipped heart beat or wake up to the fact that I am clenching my jaw (unintentionally from chronic pain), or because I will soon have to get up to pee for the 10th time.

The clock reminds me how much I am failing at getting a good nights rest. Buzzing, whooshing, ringing, thumping: the chaos that no one else can hear but me.

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

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, 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