Health, Travel

Travel and Self-Care Tips for Staying Healthy

*Published in March 2019 issue of The Beachside Resident

Traveling is good for the soul and while it can be therapeutic and fun, it can also be exhausting. Packing for a trip can be stressful. We never want to forget anything but there is always something, right?! Making a list can help you stay organized.

I always suggest packing a small health kit incase you get sick. Being sick when away from home is horrible. The last thing you want to do at midnight when you spike a fever, is to run out to a store in an unfamiliar town. I always make sure to cover everything from fevers to an upset stomach. When you are traveling, you get exposed to a lot of germs. Bringing 1000mg vitamin C supplements will help boost your immune system. I take 2-3 with each meal to prevent getting sick.

Always bring a good book. Watching movies can drain your phone and sometimes it is a nice break from that addictive glowing device. I also pack snacks. Think about this: it is late at night and you get the munchies. Having granola bars, cup of soup, fruit or muffins, will be convenient and affordable so you aren’t stuck with jet lag insomnia cravings.

Packing tea is always helpful too. The plane and any restaurant or hotel will offer hot water but the tea options are not always great. Buying tea at a coffee shop gets expensive. Ginger tea is great for inflammation and digestion. Peppermint will sooth an upset stomach and both lavender and chamomile are relaxing. Herbal teas have many beneficial uses that can help keep you comfortable on your trip.

I always bring Wildling Apothecary CBD oil. It is amazing for insomnia, anxiety, pain, inflammation, relaxation, headaches, skin and digestive issues. Wildling Apothecary’s Energy Sprinkles are crucial for traveling too. When we travel, we tend to burn the candle at both ends. This alkalizing greens mix helps stabilize the mood, keep electrolytes up, reduce illness, improve detoxification and increase energy.

In case you get a headache or just want to freshen the stagnant airport air, rubbing peppermint essential oil on your temples will help. It also calms the mind, keeps the mosquitoes away, soothes sunburns and relieve IBS. Peppermint oil is also great with shower steam for respiratory relief.

Banana Bag Drink is a powder you mix with water and drink to stay hydrated. It is loaded with vitamins and will prevent dehydration.

So, before you pack all of your favorite shoes and far too many clothes, make sure you leave room for self care products that will assist in keeping your immune system in good shape and allow time to relax. Most people get sick after a trip and you don’t have to be most people with these travel hacks.

Health, mental health, Unveiling Invisible Illnesses

Rare Disease Day

It is Rare Disease Day so obviously I am jumping on this moment to raise awareness. I have Ehlers-Danlos Syndrome and a rare type, called cardiac-valvular EDS or cvEDS.

Hypermobility is very common with EDS. There are many, many other health issues that fall under the umbrella due to this collagen defect. Imagine your joints are like rubber, frequently popping out of place from even just a hug or rolling over in bed. Sometimes these joints stay out of place or wear down. It is a painful disease to many.

This does not only affect joints but can also affect your organs.

We are all different and we call ourselves Zebras because in the medical field, doctors and nurses are trained that when they hear hooves to look for horses not zebras. This mentality has caused me to go undiagnosed and medically neglected for my entire life, up until I had genetic testing last year. Despite my heart issues and frequent ER visits, being young and seemingly healthy has had me labeled as drug seeking or having anxiety attacks.

The reason why is because EDS and dysautonomia (dysfunction of the autonomic nervous system) does not show up on routine blood work. I have never done drugs, besides cannabis, and even after open heart surgery and a broken sternum I did not even finish my pain meds prescription. I have been treated as if I were an IV drug user, because in my area that is the only reason someone of my age would have this extent of damage to their heart. I am so incredibly thankful to now be taken seriously with a diagnosis, but it is bittersweet because this syndrome is progressive and for me, my heart is always at risk. In my recent echo, I have developed a dilated aortic root. This is beyond scary to me because EDS, especially cvEDS comes with aneurisms. Dealing with this type of diagnosis as well as chronic pain and illness is mentally exhausting.

I am passionate about awareness is because it took so fucking long to be heard. I suffered for so long not taking proper care of myself and not knowing the correct treatments. I have been called a hypochondriac by exes and have hidden behind a mask for years. I want others to know they are not alone and I want medical professionals to see us.

Health, mental health

How Can Anyone Heal With Toxic Positivity?

We are programmed to praise positivity and joy while shunning grief and sadness, which isolates those who need help. As children grow after years of being told to behave and smile, they become adults wearing masks. Our bodies suppress anger, pain, sorrow, suffering and negative emotions that we are not allowed to acknowledge. These buried feelings grow with no release as we walk rampant, showing our teeth to the world to presume only happiness exists within us.

Relationships deepen through vulnerability. People need to open up about their fears, not tuck them away to pretend life is perfect. The world sees strength defined as being tough and resistant to anything other than joy. Sensitivity is seen as weakness.

People need to open up about their sorrows, not hide them with a smile that says “I’m fine.” People need to discuss their anger, not bottle it up. People will explode. People will crumble.

How can anyone heal in an environment that doesn’t allow basic human emotion to breathe?

We are all responsible and need to change our way of thinking so that we can make others feel safe to talk and reach out.

Our culture is designed to suppress half of our basic human emotions, leaving us depressed actors.

It is time to face the reality that life is not perfect and human emotions are not linear. Life is hard and pretending that we are all okay is dangerously exhausting.

Stop telling people to suck it up or that they will be fine. Ask how you can help, listen, and pay attention to the subtle details. Check on your strong friends, your happy friends, and your quiet friends.

Take off your masks and let others know it’s okay to not be okay. It is okay to cry, to grieve, to be angry, to feel lost and to feel frustrated.

We are not robots.

We can’t heal by dreaming of rainbows to swallow our pain and trauma. We heal through a process. We prevent crumbling by expressing emotions. We cannot continue to build a stigma that negative emotions equal weakness. It is time to change the rules.

Health, mental health, Unveiling Invisible Illnesses

Waking Up in Pain

Mornings are hard. When you think of Sundays, you think of sleeping in and waking up to the sun finding it’s way to to you. You think of sitting up, a nice stretch and a moment to admire the open window sharing hints of a beautiful day.

The reality is that you wake up from pain. And you have woken up several times already but you hurt too much to go back to sleep and the sun is up now, so you may as well get out of bed. Lying in bed hurts. It isn’t this relaxing thing where you can leisurely sprawl out in bed and feel like you are on a cloud, melting into your mattress. No, you have to move because one position makes your tailbone go numb and another hurts your collarbone and lying on your stomach makes your back feel broken.

So, now you get up and everything pops back into place. Almost everything. Your left hand and lips are tingling and numb but it only last a few minutes. You walk to the bathroom, holding on to everything you pass for stability so that you don’t fall. Even when you sit down, reaching to wipe is excruciating and demoralizing. It breaks you just glimpsing into the future, wondering if are going to need help wiping your own ass one day. Then, as much as you want to crawl back into bed and melt into your significant other, you quietly walk out of the room so you can find something to do and walk off the pain of sleeping.

Your head is killing you and you are nauseous as if you are hungover. As you walk to the kitchen, everything fades away and you can’t see. Your body starts to feel fuzzy and go numb, just like before you pass out. You don’t typically fully pass out so you know you can just keep walking through it as long as you hold on the way there. You are a pro and have smiled and held conversations while on the brink of passing out but you know it passes and this is your norm.

When pain levels are high, your morale is low. Your dreams and ambition slide over to the back burner. Sometimes they even get put away into Tupperware to decay in the back, hidden behind the fruit. Sometimes the sunshine creeping in through the window looks so far away. But you just get through this. You hold on to the idea of your next good day, whenever that may be. You find hope in new remedies and whatever ways you can try to have control over your health. You find hope in the people who support you and your loved ones.

“Mornings are hard. When you think of Sundays, you think of sleeping in and waking up to the sun finding it’s way to to you. You think of sitting up, a nice stretch and a moment to admire the open window sharing hints of a beautiful day.”

*On the pain scale of 1-10, I have never been under a five. My one is a five. I am not wanting sympathy but what I am wanting is to be honest about how I feel instead of hiding with an autopilot response of “I’m fine.” I want to raise awareness for people like me so they don’t feel alone, and for people without chronic pain so that they can understand their loved one or friend. We live in a world of sucking it up and smiling through the pain. We are suppressed and depressed with a bottled soul. It isn’t right. Be real and let others be real so they they aren’t lost and alone.

mental health

Toxic Positivity

Toxic positivity is a thing. We are raised to suck it up and smile. Well, fuck that. I want my friends and family to be real. I want to know about your shitty day. We all have those days. I want genuine. Raw. I don’t want you to fake anything for me or anyone else. Let people feel safe! Break the stigma of bottling shit up and autopilot responses like “I’m fine, and you?” Mental health is an epidemic because we all participate in hiding, making everyone feel alone. It’s time for change.

mental health, Unveiling Invisible Illnesses

Are You Still In There?

When bad days turn into weeks. When your strengths are suffocating. When your dreams drift too far. When nothing seems fair. When tears turn into fears. When you get lost. When you feel defeated. When you stop feeling. You aren’t alone.

Health, Unveiling Invisible Illnesses

The Grey Area of the Medical Field

The grey area is a state that doesn’t live on one side or the other. It is nomadic and intermediate; the blurry line.

The grey area is where many undiagnosed, dismissed and neglected health issues live. For some, they got tossed back and forth between doctors and never really helped by any, or are just getting by with the small crumbs of progress over a span of time.

The grey area is also the wait. It’s waiting for the inevitable, irreversible and impending progression of a particular diagnosis. It’s knowing a risks but having no control or peace of mind. Sometimes you float in between acceptance and anger.

The grey area is where the people who don’t fit in the one-size-fits-all category call home.

Many of us only know the grey area, constantly hoping someone will understand us or send out a rescue team to bring us in.

Awareness is for us, in the grey area, looking to fit in somewhere, to make sense, to have answers, to not be neglected or alone.

Share your fire until it lights up the sky, defining a new meaning and growing into a new path where those who were once lost can be found.

mental health

Spring Home Makeover 

*Published in The Beachside Resident February 2019 issue

Throughout our lives, we receive gifts and collect items. Whether it is from a vacation, retail therapy, your birthday or hand-me-downs, we accumulate a lot of stuff! It piles up and consumes our living space each day. Think about your junk drawer or the to-do list pile on your desk, the back of your closet or even your pantry. There is so much that we do not utilize and yet we still continue to shop for useless items. 
Chances are, 80% of your junk draw is trash or has another place it belongs. If you haven’t been maintaining your clean home groove, your living space may start to feel a little disorderly. A cluttered or chaotic space can cause anxiety. Getting your stuff in order gives you a pleasant feng shui, which is like a positive energy flow. 
Most of us have a busy life juggling kids, school, a relationship, friends, work or whatever other million things you have on your plate. The last thing you want to do is add cleaning your entire home to the list. Don’t. Do not overwhelm yourself. There is no need to turn your house upside down, lose sleep or forget to shave your left leg because your brain has turned into jello. Relax and watch some Netflix. 
The plan is to find small projects weekly, monthly, or whatever routine you can handle. I personally love to do these projects on Sundays. I let the sun shine through the windows, play Alabama Shakes on my speakers, light some incense and get to work. I make the process feel therapeutic. I always have a little box tucked away to fill up; my goal is to fill it throughout the month and donate it. I also have the “out of sight, out of mind” mentality of old belongings. Unless they are sentimental or something of use, throw it away or put it in the donate pile. Now, the “does this bring you joy?” question for each item is not always relevant. My hammer doesn’t bring me joy (that would probably be a red flag) but I need it. However, the ugly snowman candy dish from 2011 can probably find a new home. 
Organizing your items in a way that they can all be seen is brilliant. Marie Kondo’s method uses shoeboxes as dividers and folds shirts in a way that you can view them all instead of digging around and unfolding everything by accident, to find what you need. Personally, I love using baskets to add another shelf to a surface, such as a desk or end table. You can stack them for more storage space and they are lightweight, inexpensive and easy to change up. 
While you are decluttering, you can simmer hot water on the stove with orange peels, cinnamon sticks and cloves as a natural way to make your home smell amazing. Now you have learned how to be productive without getting overwhelmed! What home project are you going to do first while you get your dance on?
Health, Unveiling Invisible Illnesses

February Heart Awareness Month – My Heart Story

As you know, awareness is my passion. February is Black History Month (current read: Maya Angelo Poems) and also American Heart Month. I want to share my heart story in hopes to inspire and educate.

I was born with Wolff-Parkinson-White Syndrome, meaning that I had an extra pathway between my heart’s upper and lower chambers. This pathway cause rapid heart rates.

I was undiagnosed until my first cardiac ablation at the age of 19. Most of my childhood, I complained that my heart was racing but my softball and basketball coaches, P.E. teacher and most adults said that it was normal when you are running around. Well, it was normal for me alright.

Eventually, my face started to turn bright red during episodes and white around my eyes and lips. It was exhausting, but once again, it was my normal. I loathed gym class. To get out of it, I would go to the school nurse and tell her I didn’t feel well. At 15, I took my usual stroll to the nurse’s office to get out of P.E. and after looking at my face, she was prompted to take my pulse; it was too fast to count. She called an ambulance but my fast rhythm had converted to a normal rhythm by the time they showed up. It was difficult to catch the arrhythmias so my parents and doctor met and decided an event monitor was best. Within the hour of getting home from the doctors visit, my arrhythmias kicked in and we sent it in right away. I was having Supraventricular Tachycardia with rates over 250 beats per minute, nearing the 300s.

After being told I would outgrow SVT (which I had since I can remember), I found they were wrong and it only got worse. My heart would go into these arrhythmias about five times every hour, all day, sometimes lasting up to 30 minutes. At the age of nineteen, I finally have my first cardiac ablation. This procedure lasted six and a half hours! Normally, it only takes 45 minutes to an hour and a half, but they discovered the extra pathway and I was a difficult case. Since it was unsuccessful, we tried again in six weeks. Though my episodes were reduced, I still had arrhythmias and had two more ablations, a total of four cardiac ablations.

My heart would drop into the 30s and 40s and shoot up near the 200s, all day and night, with no rhyme or reason. I always asked what caused all my health issues no one cared to investigate. In my early twenties, I was also diagnosed with (POTS) Postural Orthostatic Tachycardia Syndrome but never spoke of it again. I had no idea what that meant and was uneducated by my doctor, therefore I never managed it. I didn’t stay hydrated and I was told to avoid salt, when really I needed a high salt diet. I spent my entire 20s with roller coaster heart rates and a lack of education about my health, as well as missing puzzle pieces to what was causing my chronic health issues.

In 2011, at the age of 26, I had open heart surgery. Prior to this, I went to multiple ER visits and appointments but they were looking for SVT and high heart rates, not a leaky aortic valve. I spent years being dismissed as they refused to look further. After finally getting an echo, I was diagnosed with moderate to severe aortic insufficiency. No doctor in my area wanted to touch me and when one hesitantly suggested to operate, I did not trust his confidence. I joined Heart Valve Surgery group online for support and found Kevin Accola, the most incredible surgeon in the area.

Dr. Accola said, “wow, what an interesting case! I can’t wait to find out what is going on and fix it! When is good for you?” I about cried in disbelief that someone cared and wanted to help. We scheduled a date. He informed me that he would do his best to repair my heart to avoid an artificial valve so that I didn’t need to be on harsh meds my entire life. He showed me the valve I would get just incase I needed one. I held it in my hands, the metal piece that could go into my heart… the heart that my doctor was going to have in his hands. Fortunately, he was able to repair a hole in my aortic valve and with a three inch incision instead of the classic nine inch sternotomy.

Healing was tough but pretty smooth. I had almost accidentally overdosed on pain meds. I was supposed to have someone taking care of me for the first two weeks and with a broken sternum and sensitive heart rhythm, I was pretty out of it and couldn’t keep track. I also had a hard time with my breathing and started to get fluid in my lungs but worked hard with my spirometer and by three months, I was feeling back to myself. I did reject the sternum wires and needed to get them removed as they were about to come out on their own!

In January of 2017, I was having scary arrhythmias and my body was going into shock. I was in the ER every other night for two months. My arrhythmias were not getting caught at the ER so they diagnosed me with anxiety and panic disorder, sending me home. I saw several doctors but once you get (mis)diagnosed and labeled, it is hard to be taken seriously. I finally got an event monitor from my cardiologist to record my rhythms for a few weeks. I passed out leaving an appointment and it was caught on the monitor. My doctor ordered a Tilt Table Test and triggered an episode. I was diagnosed with Neurological Syncope, where my heart rate would randomly plummet. With my nighttime heart rate dips into the low 40s and occasional 30s, I finally got a pacemaker in June of 2018. Truth be told, I could have used one a decade ago, when I had documented ER visits with rates in the low 30s. However, I stuck with the same doctor and never got outside options previously.

A few of my main health issues are caused by Dysautonomia, the dysfunction of the autonomic nervous system. In 2018, I was finally diagnosed with Ehlers Danlos Syndrome.

As of today, my latest heart update is that I have been having tachycardia in my sleep, picked up on my pacemaker checks. My recent echo showed that three of my heart valves leak mildly and my aortic valve leaks mild to moderate. Both my aortic and mitral valve have sclerosis (calcification and thickening). My aortic root is mildly dilated, which could be the start of an aortic aneurism. Aneurisms are fairly common with Ehlers Danlos Syndrome.

At some point, I will need my valve replaced (at the very least). I decided to go with a pig valve to avoid the meds and because I rejected the sternum wires last time. I also have a genetic mutation MTHFR which can possibly be the cause of metal sensitivities, and another mutation that causes me not to metabolize Warfarin, a common med used to thin your blood after a heart valve replacement. Fortunately, I didn’t need the artificial valve earlier, before I found out about these mutations.

And now we watch and wait. Having a lifetime of heart issues is a scary thing to live with. Knowing that age is nothing but a number for me, and irrelevant, is a hard pill to swallow. Being told I am “young and healthy” is something I hear often. Even with my health history, I still have a hard time being heard. This is why advocacy and being educated on your health, is so important. I truly believe that I would be dead if I hadn’t fought to be heard.

Keep up with your medical check ups and get copies of all of your tests and labs. Ask questions, get second opinions and educate yourself and your family. If you don’t like your hairstylist, you go to a different salon, right? So why do we act stuck with whatever doctor we are handed but will so easily get a new stylist? Find a doctor that you trust and feel comfortable with. Be a teammate with your health plan and don’t give up when you feel dismissed. Find a support group online because you will learn more from them than your physician.

Spread awareness, educate yourself and others, and advocate for your health. You got this!

Health

From 28 Weeks to Sixteen

SIXTEEN! On the second day of the second month of 2003, I had two babies!

I was so scared and had been in the hospital for weeks at a time due to preterm labor at only 20 weeks. By 28 weeks, I was fortunately staying in the hospital, 2 weeks in, and went into labor. I was told they had a 50% chance of survival. I had to leave the hospital without my babies, worrying whether or not they would make it through the night. There were many close calls and the first year was tough with oxygen tanks, apnea alarms, multiple specialists appointments and times two! These boys are strong and they are fighters. I am so lucky to have them in my life, to call them family and to watch them grow and become amazing humans.