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.

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

Banana Bag Oral Solution

Banana Bag Oral Solution is a drinkable IV solution that can help skip the expensive ER visit and assist in recovering from an illness, long day of travel, hangovers or chronic illness management.

We get dehydrated easily from a night of drinking, illnesses, a day in the heat, lack of self-care or stress that causes you to forget to hydrate, patients with Postural Orthostatic Tachycardia Syndrome, Dysautonomia and many other reasons.

Banana Bag Drink is easily available online and they also have subscription options. It comes in a convenient single serving packet that you can bring with you in your purse or suitcase. It has saved many from ER visits where they would spend hundreds to be seen just to get fluids. People with chronic illnesses such as POTS sometimes need to get a bag or two of fluids and staying on track with Banana Bag has cut down expensive trips, saving time and money, less invasive, and less exposure to illnesses.

Each packet is formulated for easy methylation, so it is safe for anyone with the MTHFR mutation. Anyone who struggles from vitamin deficiencies will also benefit. People can also get deficiencies from malabsorption in the intestines from IBS, Crohn’s Disease, Celiac Disease, etc. When you are dehydrated, your blood volume is less than desirable and this can result on that dizzy feeling, nausea, and headache due to blood pressure dropping and your heart rate increases to compensate. Banana Bag is designed to expand your blood volume like an IV solution would.

It is a game changer and great to have around should you need a speedy recovery.

Health

Detoxing Juice

Celery Juice

Did you know we all have gut rot? Gut rot is rotting food particles that have been rotting in your intestines for YEARS. Celery juice helps to clear that out and to increase and strengthen your bile, which breaks down fats and kills pathogens. This juice also supports and heals your central nervous system by clearing out toxins. This is also great for anyone who has Epstein Barr or Streptococcus, by cleaning the neurotoxins that are inflamed. If you have MTHFR like me, you have a hard time detoxing your body; celery juice is a great option.

Drinking celery juice on an empty stomach, first thing in the morning is a great routine to add for the start of your day.

Cheers to self love and healing your body for the New Year!

Body and Beauty, Health

Perfume, Fragrances and Toxic-free Living

Perfume and fragrances are full of undisclosed toxic ingredients that do not need to be listed due to fragrance being a trade secret.

When you soak your clothing and skin in your fancy $80 perfume and hug your friend’s kids, your kids and your loved ones, sit next to a stranger in a waiting room, meet your girlfriends for dinner, stand in line at the post office, or whatever mundane task you have on your agenda, just know that your scent is offensive to someone. I don’t mean that in the way that someone doesn’t have the same taste as you, but I mean that in the way that these chemicals make some people nauseous and react with a headache and even asthma or sinus issues.

Stop buying products with ingredients you don’t know and allowing these companies to get rich while adding toxins to your skin and lungs, hurting those around you and slowly building up toxins in your body.

Be the change. Shop natural.

Perfume oils are a nice alternative to heavy fragrances. Wildling Apothecary offers a safe, toxic-free alternative to perfume. Grapeseed oil as a base/carrier oil and a blend of essential oils will create a soft blend. Anything can be customized or even a request to add CBD to your blend. Chamomile and lavender are both pretty scents that have a calming affect.

Detoxifying your life can be overwhelming when you realize how many aspects of your life exposes you to toxins. Starting with your beauty products is one way to begin the transition to a cleaner, safer way of life.

Wildling Apothecary

Healthy Food

The Art of Plant Based Diets

*From my article in The Beachside Resident November 2018
Mother nature gives us the good stuff. Not only are fruits and vegetables beautiful but they fuel our bodies. I chose super vibrant art inspired food to highlight the juicy details. Check out the amazing benefits from each of these ingredients:
Dragon Fruit: High in nutrients, fiber, minerals and vitamins, low on calories and a great source of antioxidants and magnesium. Ideal for gut health and boosting your immune system. Put it in a smoothie or with your yogurt.
Star Fruit: High in vitamin C and a great source of potassium with anti-inflammatory properties. Also high in fiber. These also look awesome as a garnish on a martini glass. 
Carrots: Rich in vitamin A. Great for your metabolism, promotes healthy skin and reduces vision problems. Reduces cancer risks and lowers cholesterol. Top carrots on your salad or sneak them into your muffins or meals.
Beets: wonderful source of fiber, C and folate. Beets have a plethora of benefits, like boosting your endurance, digestion, brain health and sexual health. Just don’t be scared when you drink a glass of beet juice then next morning when you poop. It’s just beets. Juice them or top off your salad with some beets. They also make a great base for a veggie burger and pairs well with goat cheese. 
Spinach: Folic acid is a synthetic form of folate and it isn’t good for you. In fact, 40% of the population can’t even process it due to the very common MTHFR mutation, which causes many issues, including ADHD, autoimmune disorders, depression, brain fog, anxiety and more. Folate can be found naturally in your leafy greens. I put some in all of my meals and even in my smoothies. Also a great source of tons of other minerals and vitamins your body needs that you can’t get in a bag of Doritos.
Health, Unveiling Invisible Illnesses

Invisible Illnesses Unveiled – Addiction with Red

Alicia (Red) Campitelli

Sobriety / Clean Date March 7th, 2016

Fifty percent of addiction is due to genetic factors. The other 50% is due to poor lifestyle choices. The same could be said for heart disease and other health issues. You may be genetically predisposed to something, like skin cancer, but there are ways to protect yourself and try to minimize your genetic risk.

One gene, for example, is the MTHFR gene mutation. This gene is common in 40% of the population and in a nut shell, it means that you can not process folic acid. Folic acid is a synthetic form of folate. If you can not process it, it will build up toxicity in your body and cause a folate deficiency which can lead to many health issues: autism, ADHD, depression, anxiety, addiction, heart palpitations, insomnia, mood disorders and even cancer. This is just one gene mutation, a common one, but there a many others.

It is important to take care of yourself, be healthy and learn to cope with life’s stressful situations. These important skills are not always taught in life or can be fogged by low self worth. Throw in poor nutrition, deficiencies and crappy sleep habits and you have a hostile environment for your body to produce chemical imbalances that can put you at risk for addiction.

I chose to interview Red because addiction truly is an invisible illness. It does not discriminate against sex, race, wealth or fame. It is not always obvious to others and some people can shine a light on the pieces they want you to see in their life, while keeping the rest in the shadows. There are many stories and these stories grow and grow and our country is overgrown with this epidemic. In hopes that we touch someone and inspire even just one person to become sober, I am helping Red unveil her story.

What is your official diagnosis and when were you diagnosed?

I am an addict. Substance abuse / drug addict with other borderline issues. I would say I was 21 when drugs and alcohol started to effect my life in a negative way.

What was your addiction?

My drug of choice was opioids (pain killers like oxycodone / roxicodone) and narcotics (heroin). Downers were my every day drug but I would do anything that was in front of me. I hated cocaine & crack but I would use till it was gone, even if I was the creepy chick in the corner freaking out alone. Blues made me feel “normal.” It’s kind of crazy to say, but it was true for that time period of my life.

Looking back, can you think of any warning signs that may have led you to addiction?

Low self-esteem throughout my whole life and never feeling good enough, in my own head, or to others. I engaged in an emotionally, mentally and physically abusive relationship, which soon started isolation, depression, lost of self-worth, diminished family ties and lack of interest in things I once enjoyed. After that relationship had ended I turned to drinking and childhood friends where replaced with using friends. I would build up an identity and when I lost it, I would fall apart.

What helped you get sober?

Enough was enough. I was tired of living the life I was, which wasn’t living at all. I didn’t want to die but I wasn’t thrilled about living. I was surviving. Groundhog Day (movie) surrounding around the getting and using and means to get more drugs day after day. Getting high wasn’t fun anymore and hadn’t been for a long time, but I couldn’t stop. I can’t put into words of how horrible that feeling was. I started heavily drinking at 21 but I could take a couple days off; however, once I started using opioids and narcotics it was all over. I used drugs all day and everyday. I remember quitting cold turkey one time, in the beginning, and lasted four days. I wasn’t ready until I went to rehab 2 1/2 years ago. I choose to go to rehab in a different state because I didn’t trust myself to get through withdrawals and not check myself out or sneek drugs in the facility, in my neck of the woods. I had to be honest if I was serious about changing. I am not saying another addict couldn’t get clean on a friends couch, by themselves, cold turkey or in the same state they used in, but I needed to escape to help with my obsession.

What advice could you offer to someone who is currently struggling with addiction?

Ask for help. I know it doesn’t feel like it, but things will get better; hold on.

There are so many possible ways to stay clean: 12 step fellowships, religion, celebrate recovery, working out / organized sports, family, maintenance programs, etc. If one of the listed above doesn’t work for you then switch it up. I don’t care what you have to do in order to change your life and get the needle out of your arm, liquor bottle out of your hand, pills out of your tummy, powder out of your nose and smoke out of your lungs; you need to create a new life. Stop repeating your negative self-destructive patterns. Try to find out why you do what you do and better yourself. Relapse can happen but its important to stop using as soon as possible and surround yourself with people in recovery. Keep in mind that relapse doesn’t have to be part of your story. You are not alone!

What advice could you offer to someone who is sober, in regards to staying sober?

Don’t pick up NO MATTER WHAT! The feelings of using will pass. Play the tape all the way through. Drugging will only make things worse in the situation you are trying to escape from.

When you were struggling with addiction, what was your mindset? At what point did you realize that you were struggling with addiction?

When I put drugs before anything or anyone, I realized I had a problem. I did care about people when I was in active addiction but if I had to choice between using and a particular person or drugs, drugs would win that fight. It’s sad yet it’s true, but in the moment, I didn’t look at it that way.

Favorite quote:

Oh man, my favorite quote… This is funny to me because my life before sobriety was so different. One of the quotes I used often was: “If anything could go wrong it will. I even have “Murphy’s Law” tattooed on my leg. Now I have turned into that annoying person I used to hate (on social media) with all the inspiration quotes.

“Don’t let you stop you”

“Fear is a liar”

“You are incharge of your own happiness”

“Get comfortable with being uncomfortable”

“When you are grateful you become less self-destructive”

“Oneday at a time”

Simple, right? I put this in my mind daily:

“My philosophy is, Its none of my business what people say of me and think of me. I am what I am and I do what I do. I expect nothing & accept everything. And it makes life so much easier.

-Anthony Hopkins

Three things you can’t live without:

Besides the obvious, in order to survive: Laughter, nature and companionship.

What are your goals? Where do you see yourself in five years?

Staying clean from drugs & alcohol, paying bill’s on time, building credit, being here for my family’s lives as a loving, trusted and supporting member, furthering my education, building meaningful relationships, helping others and dedicating time to the community, being happy and filled with joy. Some people might look at that list and think that is what adults are supposed to do and I should want more for my life life a top of the line car, big house with white picked fence, money, travel around the world, the perfect husband, three kids… Well, you’re not wrong with wanting more but I’m just now learning to be an adult. I was very selfish in my active addiction and I was given a 2nd chance, so I’m taking it and trying to become a better person. I’ve been working on these goals since I got clean but I’ll have to continue the rest of my life.

Resources

National Suicide Prevention Hotline

1-800-273-8255

SAMHSA’s National Helpline 

1-800-662-HELP

Florida based recovery program

Peace Club

Non-profit movement to help people with depression, addiction and suicide

TWLOHA

——-

Photos by Misti Blu

Shoot location at Rockledge Gardens

Health, Unveiling Invisible Illnesses

Fight Like a MTHFR!

New book! Who else is a MTHFR!? Okay, seriously, the MTHFR mutation is actually very common and most doctors do not test for it and many are not educated on the mutation. Who wants mental health awareness!? I sure do.

We also need MTHFR awareness and easy access to testing this common mutation that also causes depression and several other health issues. Did you know that I was diagnosed with severe major depressive disorder and suffered from depression my entire life?

I started seeing a therapist regularly who diagnosed me as “severe” and throughout the process of digging for answers for my health, I discovered that I had an MTHFR mutation. I started l-methylfolate and by the following month, my depression was gone for the first time ever!

No one truly understands depression unless that have it. It isn’t just a stressful day or being in a funk because life has tossed you lemons. It is a dark, heavy blanket of gloom that feels like a mountain of grief in the pit of your stomach. After starting the supplements and seeing a huge change, I went to see my therapist and at the end of our time, she told me that she should have paid me for the session because I lit up her day and counseled her. It was such a sign of relief!

I just got this book by Dr. Ben Lynch to educate myself more on MTHFR so that, in the future, when I get my degree I am armed with the knowledge to make a difference. When you want to see a change in the world, you have to get your hands dirty and do it yourself.

Up to 40% of the population had this mutation. Did you know that folic acid is a synthetic, manmade form of folate? People with MTHFR mutations cannot process folic acid, which is also fortified in our breads and pastas. This leads to a toxic build up and can cause depression, ADHD, anxiety, heart palpitations, brain fog and many other health issues.

My Amazon Favorites! Find MTHFR supplement here.