Tag: chronic pain

Health, Unveiling Invisible Illnesses

Holistic Vs. Modern Medicine

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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?

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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

Thrive Tape Kinesiology Joint Pain Support

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Thrive Tape “Far Infrared” Kinesiology Tape helps support muscles and joints while also targeting pain and recovery in most injuries.

This tape is for everyone. Not only is it great for athletic people but it is also used often for people with connective tissue disorders, like myself. Many people who are neither chronic warriors nor training athletes can also benefit from this kinesio tape. Whether chronic or acute, many people experience pain from sore muscles, have previous injuries or just need a little extra support to prevent a strain.

It’s very simple to use! I keep a roll at home and a roll in my car. There is also a small pamphlet for instructions and visuals on common injuries or painful areas.

  • First, cut the tape to desired length.

  • Second, fold evenly and round the edges.

  • Peel the tape off

  • Place the tape in the desired area

You can wear and customize the tape for any area. This makes it much easier that purchasing several braces for multiple joints that you end up losing or getting dirty.

You can use my personal code THRIVEDAY for 20% off your order at https://thrivetape.com

Health, Unveiling Invisible Illnesses

What “I’m Tired” Really Means

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When someone with a chronic illness says they are tired, it is not the equivalent to when you work a long day type of tired. It’s not the same as you not getting enough sleep last night type of tired.

Fatigue for someone who is chronically ill is much different than being just tired. It is the utmost pure form of exhaustion. It is as if your body and your mind are separated. The mere thought of lifting your limbs to get out of bed sounds like the equivalent of climbing Mount Everest. Every cell in your body aches. Blood slowly moves through your veins; it’s as if there is not enough air to fill your lungs.

Unlike you, taking a nap or getting a good nights rest is not going to relieve anything. There’s no amount of self-care in the world that can touch this feeling. Imagine when you wake up your body aches and you’re so tired, dizzy, and exhausted and realize that you have the flu. The good news is that in a week or two you will be all better and back to your normal self. For somebody who is chronically ill, those two weeks last forever. Those two weeks never end. You’ll never wake up feeling better.

Healthy Food

Lavender Lemonade Recipe

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Click image to buy this blend

Wild Eclipse can be sipped warm or you can use it to add to lemonade for the perfect lavender infused lemonade that everyone will love. The herbs selected are also calming and relaxing, with other beneficial properties.

 

Lavender Lemonade Recipe:

In a large pot, bring 4 cups of water to a boil and simmer, mixing in a half cup of organic cane sugar, add an ounce of maple syrup. Add two heaping tablespoons of Wild Eclipse and turn off the stove top to let infused simple syrup steep. 

Squeeze 1.5-2 cups of lemons. Strain simple syrup with a cheesecloth. Pour in pitcher and add ice until ice stops melting. Pour in lemon juice and stir. Serve cold. 

Health

Tinnitus

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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, Unveiling Invisible Illnesses

Dysautonomia International Education Day

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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

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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

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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.