Tag: spoonie

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 and 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.

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.

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.

Health, Unveiling Invisible Illnesses

Sweet Dreams with an Invisible Illness

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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.

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