Health

Healing Sprinkles

Food is medicine! We are destined to age, but why not do it well? This blend of herbs and spices have been around for a long time. The selected blend has many anti-cancer, anti-inflammatory and anti-diabetic properties that also reduce risks for heart disease and brain diseases. Antioxidants, fiber, minerals and vitamins also encompassed in this healing mix.

Sprinkle it on your cereal, oatmeal, toast, or mix it into your smoothie blend. Add it to your desserts, muffins, brownies and baked goods. Top in on sweet potatoes or fresh fruit. This is an easy way to maximize your health and get natural plant-based benefits.

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Carob

  • Rich in calcium
  • High in fiber and protein
  • Diarrhea relief
  • Antioxidants
  • Caffeine free
  • Tastes like chocolate
  • Excellent source of vitamins and minerals

Maca

  • Increases stamina
  • Balances deficiencies
  • Supports fertility
  • Balance hormones for both men and women
  • Immune support and circulation
  • 19 essential amino acids
  • Rich in vitamins and minerals
  • Alleviates Chronic Fatigue
  • Reduces signs of aging
  • Enhances memory

Cinnamon

  • Loaded with antioxidants
  • Anti-inflammatory properties
  • Reduces risk of heart disease
  • Great for diabetics
  • Reduces high cholesterol, lowers lipids
  • Helps metabolism
  • Protects neurons and brain health
  • Anti-microbial and anti-cancer

Turmeric

  • Antioxidants and anti-inflammatory
  • Used in medicine for thousands of years
  • Improves brain function and reduces risk of brain degenerative diseases
  • Lowers risk of heart disease
  • Can help prevent cancer
  • Helps with arthritis and pain
  • Helps with depression
  • Anti-aging

Ashwagandha Root

  • Ancient medicinal herb
  • Anti-cancer properties
  • Reduces cortisol level
  • Reduce stress, depression and anxiety
  • Improve muscle mass and strength
  • May reduce inflammation and lower cholesterol

Lemon Balm

  • Eases stress and anxiety
  • Great for heartburn and indigestion, cold sores, insomnia and high cholesterol
  • Excellent use for brain health
  • Calming

Nutmeg

  • Relieves pain
  • Soothes indigestion
  • Improve skin quality
  • Reduce insomnia
  • Support immune health
  • Improve cognitive function
  • Improves circulation

Ginger

  • Anti-inflammatory
  • Anti-nausea
  • Antioxidants
  • Reduces muscle pain and soreness
  • Helps with joint health
  • Reduce heart disease
  • Helps with indigestion
  • Reduce menstrual pain
  • Lower cholesterol
  • Anti-cancer properties
  • Improves brain function

*Please consult with your doctor before adding spices into your diet if you are on certain medications

Health, mental health, Unveiling Invisible Illnesses

The Invisible Battle of Chronic Illness

Ehlers Danlos Syndrome is an umbrella of many ailments that fall beneath it. This genetic disorder manifests in many ways; various joints and organs are affected and there is a large range of severity on each spectrum. None of us EDSers are the same. We call ourselves zebras because most doctors think of horses when they hear hooves, but rarely it can be a zebra. We are the zebras in the medical world. There is no cure for EDS but each symptom can be managed separately. It is tricky because we sometimes have several specialists to manage each symptom, or comorbidity, which can resemble having a full time job. Juggling this health conditions not only takes a toll on our energy but it also takes up most of our time. 
On a regular basis, I see several specialists: cardiologist, electrophysiologist, pulmonologist, cardiothoracic surgeon, rheumatologist, neurologist, otolaryngologist (ENT), endocrinologist, gynecologist, gastroenterologist, and of course my general physician. I also sometimes see a chiropractor for traction and the use of some machines to help build strength in my lower back. I don’t have access, but need to see a geneticist, nephrologist, ophthalmologist and orthopedic specialist. That is about 12-16 specialists every 3-6 months. If I see fourteen doctors four times per year, just as a guess, that is fifty six doctors appointments in a year! I also end up in the ER, on average, about six times per year and usually have one or two hospital admissions… on a good year. This year, I had a few surgeries already and last year I had a pacemaker put in. Last year I probably had close to fifty emergency room visits so we won’t count that year. 
An average day for me is waking up around 2am-4am with lower back pain, thirst and several bathroom breaks. I never truly sleep through the night. I have a dysfunctional nervous system (dysautonomia) and suffer from Neurocardiogenic Syncope, Postural Orthostatic Tachycardia Syndrome, sleep apnea and issues with my body temperature, blood pressure, heart rate and more. My pain level has NEVER been under a five on the 1-10 scale. Not even for a moment. I usually have to be out of bed by 7-8am because my body is so sore when lying down for a long time. Even if I am sick, I have to get out of bed or the pain is so severe that I can not breathe. This means that I can not sleep for over six hours without a break, or the pain is unbearable. 
I take most of my medications and supplements in the morning. I usually start my day off with a headache, nausea, low blood pressure and a general feeling of being hungover but without the fun tequila shots. As I make it to midday, my entire body aches. Every cell in my body hurts. I feel so fatigued and exhausted, even if I didn’t do much. My head hurts and if I am around strong perfumes, chemicals or exposed to any chemicals in my food, I will have a runny nose, body aches and migraine with aura (visual disturbances). My lips and left hand go numb, simultaneously, about five times a day. No one knows why. My symptoms often mimic a stroke so I fear that one day if I have a stroke, I wouldn’t know the difference. I have chemical sensitivities that are hard to avoid. Wearing a mask and watching what I eat helps. Usually by 5-6pm, I am ready to collapse. Sometimes I make it through, with a smile on my face, because I try to live my life to the fullest. Despite how I feel, I push it to the limit to be the best mother, wife, friend, student and so on. I refuse to give up no matter how hard it gets.
By evening, I have made it through the day and usually my body temperature is low and I am freezing but somehow feel like I am burning up and running a fever. My temperature usually will read 96-97 degrees. It is incredibly uncomfortable to feel hot and cold at the same time. My chest feels heavy at night and if I lie on my back I start to feel fluid in my lungs. On a tough day, I will breathe so shallow while I fall asleep that I jump up gasping for air, with low oxygen and a racing heart. Other nights, I can’t sleep because memories flash back from the past when I was in the back of an ambulance or in the ER with chaotic arrhythmias. I close my eyes and hope to get to the next morning. It all starts over again in the morning. 
Depression can be a struggle for those who suffer with daily pain or frequent traumatic hospital visits. I recently came up with the term “Post Traumatic Health Disorder.” Depression can also be a factor because we feel like we have lost the person we once were and are prisoners to a body that doesn’t feel like it belongs to us. Our friends drop like flies the more we cancel on them, relationships are strained and many physicians don’t take us seriously because oftentimes these symptoms don’t show anything in blood work and we are passed off as a mental case. Many doctors are not familiar with rare, genetic disorders so they typically label us with anxiety or a catch-all diagnosis and send us on our way. We feel alone and like no one understands. It is scary, disheartening and frustrating. Seeing a therapist is important, as well as finding a support group.
Having an invisible illness is a battle and we all think of ourselves as warriors. We are warriors. We battle and fight every damn day. Tears are shed on the battlefield often and we watch our tribe through ups and downs on our online support groups. We have lost some and watched others give up. We keep fighting and supporting each other and raising awareness while we struggle to make it out of bed.
Always be kind to others, as you have no idea what they are battling under all that makeup and forced smile. And to those who are my fellow warriors, I believe you.
Health, Unveiling Invisible Illnesses

Invisible Illnesses Unveiled – Scoliosis

Ra’chelle is someone I have known since the third or fourth grade. She was our babysitter in Clever, Missouri. Somehow, we both migrated to Florida and became photographers hiding an invisible illness. We touched base on Facebook and she opened up to me about her scoliosis.

I knew Ra’chelle as a badass cheerleader. I had seen her at practices and she would toss other cheerleaders up into the air and she would catch them! She was so poised and strong. I always looked up to her and had the coolest babysitter in town. I never had any idea that she could be in pain.

Scoliosis is a condition of the spine that curves sideways. It usually begins during puberty during the growth spurt.

What is your official diagnosis and at what age were you diagnosed?

I was originally diagnosed with a slight case of scoliosis, around the age of eleven or twelve, during a routine sports physical at school. They said it wasn’t too bad but I could probably get some correction of the curvature by wearing a 24 hour brace. As a new junior high cheerleader, my vanity wouldn’t allow the big bulky brace, which was my first mistake.

Currently, I have severe scoliosis, S shape spine, which has caused crooked hips, one leg longer, ribcage is twisted and ribs overlap on one side restricting my breathing at times. The other side of my rib cage hunches up on my right shoulder, my neck is “swan neck” curving the opposite direction it is supposed to, causing it to feel as though I am carrying a 50 pound head around by the end of the day. I have constant headaches; everything being crooked causes joint pain and catches in my knees and hips. My right shoulder dislocates on a regular basis and has to be popped back in. I recently found out that the exhausting pain I’ve felt in my low back for the last couple years is because I have a fracture in my lower spine. I have degenerating discs and osteo arthritis, consistent muscle tension, spasms, and pinched off nerves from everything trying to keep up with my physical activities. I have lost a total of 3-4 inches in height since high school. These are all issues I never talk about and keep to myself.

At what point in your life did you start to see or feel a change in your body? How did that affect you?

I began having some discomfort toward the end of my high school years, because of the sports that I was involved in, and the activities I proceeded to do without the suggested brace. It didn’t feel serious to me at the time. I was young and invincible! By my early twenties, my condition had progressed enough that I had already lost an inch in height since graduating high school. I was having a considerable amount of pain and symptoms. I had Medicaid at the time, which didn’t cover chiropractic treatment but they sent me through an extensive Pain Management Course. I learned self-hypnosis to help me sleep, had some therapeutic massage, learned that no combination of narcotic pain meds or muscle relaxers were going to help because my body doesn’t do well with heavy medications. I refused to live in the fog that they caused. My days of ibuprofen around the clock began. During this course, they also diagnosed me with fibromyalgia. Add that to the IBS, asthma, chronic bronchitis, and reoccurring vertigo, and ulcers, that were all diagnosed back in high school, and what do you get? Depression!

I also found out quickly that I have pretty severe reactions to most antidepressants! The first time the doctors began telling me to go on disability, I was the young age of 26 with two small children and there was NO WAY I was going to do that! They also had lots of big ideas about surgeries we could try, which I also refused due to seeing my sister in law go through the same surgeries first hand. I didn’t feel like any of these solutions were acceptable. I just powered through and pressed on. Skip forward to 2013 or so, I was late in my 30’s and had spent the years powering through the pain, now alternating Ibuprofen and Aleve all day, every day just to be able to move, and was getting some intermittent chiropractic care. After one hell of a year full of illness from some rare third world country parasite (entamoeba histolytica) that I somehow contracted, along with a hysterectomy and a total prolift surgery, I decided it was time to do everything I could possibly do on my own to maintain my health. This was the start to my health and fitness journey. I began changing my diet and educating myself on the importance of what we put in our bodies as well as getting in shape and strengthening my core, which is of crucial importance with any type of back issues! It was during this transition of shedding fat, toning up, and growing muscle that I began taking photos of my progress which I quickly developed a love/hate relationship with. This was the first time I really began to physically SEE my deformities caused from my S shaped spine. By this point, the curve was causing my entire rib cage to twist leaving some ribs on one side visibly protruding. My hip bones were crooked, and when bending over toward my toes the “hunch back” on one side had begun. This started a whole new mental struggle with my vanity. I stopped wearing little tight shirts as much, always wore my hair down to cover the top of my back if in a tank top, and became very self-conscious of my disfigurements.

What is your biggest struggle?

My biggest struggle is listening to my body when it is telling me to stop. I have raised my kids and am still young and work very hard to be healthy and physically fit, despite my conditions, because there is still so much that I want to do in life! I love being outside in nature and being active and going on adventures. So often, so many times each and every day, my back is telling me to stop, or my shoulders and neck are telling me to take my hair down and take my bra off because it’s pulling on my muscles. My lower back, hips and legs are screaming to get horizontal to relieve the pressure and it’s so difficult to listen. I don’t claim the disabled title and I do still work and from the outside, people truly have no idea what I am feeling as I push to just keep up with everyday tasks. How do I suddenly stop in the middle of an outing, photo shoot at work, or a shift at the gym and say “I have to stop now.”

What is your biggest accomplishment?

I would say my biggest accomplishment is what I have done to stay strong enough to have raised my littles into bigs and to be fighting like hell to stay strong enough to play with my grand kids when I see them, to carry out my career goals as a photographer, and to go on many more adventures with my husband.

If you had advice for anyone newly diagnosed with your condition, what would it be?

First, drop your vanity and WEAR THE BRACE! I am sure they make them much less bulky these days! Second, start now and never stop strengthening your core. This is so very important. The docs told me early on that the best thing I could do is keep my core strong and also swim thirty minutes each day, neither of which I did until way later into my life. I still don’t swim everyday as I don’t have a pool, but it is a goal. This condition CAN be corrected if caught and treated at an early age of growth. You CAN keep it from progressing as much or as rapidly IF you treat it early on. The only thing I can do at my stage now is just a million different things each day just to maintain and stay mobile. It’s exhausting but it’s necessary.

What are three things you can’t live without?

My loved ones, music, my faith. I wouldn’t want to live without the beach ever again.

Favorite quote:

“Just Be Real”

What inspires you on a daily basis?

Watching how my grand babies are growing into these very active little angels makes me push to keep going so that I can spend more time with them as they grow. Also, seeing the stories of so many other people who have struggles and conditions that far outweigh anything I could ever imagine and how they have overcome and press on. It’s truly amazing what we humans are capable of with the right amount of courage, faith, and desire. Better healthcare would definitely make the fight less agonizing.

Photos by Misti Blu Day

Ra’chelle’s Photography: Majestic Soul Photography

Health, Healthy Food, Sweet Tooth

Smoothie Ideas

  • Splash of Pineapple juice
  • Ginger
Health, Unveiling Invisible Illnesses

Invisible Illness – Dysautonomia Awareness at Local Emergency Rooms

I have not been confident in my local emergency department to care for me, due to dozens of terrible experiences. Am I mad at them? No. Is it their fault? Not really. This ER is 2.3 miles from my home. I can be upset or I can do something to help myself and others. Thanks to Dysautonomia International, I have access to educational printouts for physicians. I have dropped off information to the ER director and plan to follow up with a call today since he was unavailable.

I want the entire staff to be aware of medical issues that present themselves as ANXIETY. Please rule out other possibilities! Dysautonomia does not show up in blood work and it is common in young women, who are constantly dismissed and labeled with anxiety. There are many causes for it. My underlying condition is Ehlers Danlos Syndrome. Many ERs only factor in ONE complaint and the other 10 issues get tossed aside, which could help solve the puzzle.

Times are changing. I am joining the medical field as soon as I can and I am fighting for a new way of healthcare. This is my ER and I refuse to be afraid to come here, if I am in a life or death situation, because of the lack of knowledge of invisible illnesses. Learn my name. Set aside your ego and let me teach you.

Health, mental health, Unveiling Invisible Illnesses

Health PTSD – Warrior Status

There are some evenings when I can’t help but think about the nights when my heart would struggle to beat. By the end of the day, my blood volume would be so low because I was never educated on my health conditions or how to manage my health and had no idea what was going on. I would go all day without drinking water. I avoided salt because I assumed that’s just what you do, especially with heart issues.

Here is a quick run down about my health history:

Postural Orthostatic Tachycardia Syndrome was just a small fraction of what I had going on. Last January (2017) I was still very in the dark about my health. Even though I already had four cardiac ablations for Supraventricular Tachycardia, caused by being born with an extra electrical pathway in my heart that caused rapid heart rates and extra beats, I still never had a real team of doctors who had my back.

Wolff-Parkinson-White Syndrome made it very difficult to have a fully successful ablations due to the extra pathways in very difficult and rare spots of my heart. My electrophysiologist often noticed two P Waves on my EKGs. The P Waves are the little squiggly line that shows where the heart beat originates.

After four cardiac ablations, I needed an aortic valve repair. This is done with open heart surgery and cracking open my sternum. My aorta valve was regurgitating blood flow backwards. This caused shortness of breath and other issues.

Having the ablations did not fix my rapid heart rates. It reduced them but I still got them and often. I needed medication to slow down my heart rate but I also had bradycardia (slow heart rate) so I was unable to take medication for about a decade. I would bounce from 45 beats per minute and jump up to 150, all day. I was diagnosed with Neurocardiogenic Syncope and Sick Sinus Syndrome. This means that my heart would randomly plummet, while doing simple tasks, causing me to blackout or set my heart into a scary arrhythmia. I developed a dysfunctional sinus node. The sinus node produces your heart beat, like a natural pacemaker.

Back to 2017… As if nothing mentioned above wasn’t scary enough, including my brief encounter with cancer, January 5th, 2017 was the scariest day of my life. Unbeknownst to me, my blood volume was dangerously low and I was dehydrated and creeping up to pre-diabetic status due to a careless diet and love for sugar. I wasn’t taking care of myself the way my body desperately needed me to. My heart went tachycardia, which wasn’t anything I wasn’t used to, but then the rhythm changed to chaotic. I was going into a potential fatal arrhythmia.

We called 911 and my husband (boyfriend at the time) held me in his arms as my limbs fell to the side, with no blood flow. I was going into circulatory shock. I told him I loved him and to tell my kids I loved them and the blurry lights in the distance arrived closer. Suddenly I felt my heart convert back to a normal (but fast) rhythm and I could breathe again and move my arms. This happened again and again, several times a week, for months.

I was continuously dismissed, labeled with anxiety and even prescribed acid reflux medication for heartburn. I did not have heartburn, I was having chest tightness and pressure but this was just a small example of being disregarded and carelessly misdiagnosed. Eventually, I had a 30 heart monitor on to capture every episode. The monitor was hidden under my shirt and robe. My body would shut down before the doctor’s eyes as he mocked me and stated it was just anxiety and an EKG or heart monitor wasn’t necessary. Despite my history and the fact that I was the happiest I had ever been, I was always sent home or they couldn’t catch an episode.

Six months later, I finally found an electrophysiologist who set me up with a pacemaker that I needed ten years ago. My neurologist also looked at the tests and confirmed that what they thought looked like an anxiety attack was my body going into circulatory shock. I can also finally take heart medication to keep the fast rates at bay, now that I have a pacemaker.

Like a thick gloom, blanketing you and swallowing your body, the memories take over. There were times that I literally begged for my life. I could barely breathe and my arms and legs lost color and I couldn’t move. My body would start shaking vigorously as I took small rapid breaths. “Please help” was all I could pathetically mutter to the unconcerned nurses who assumed I was a drug seeker.

Those six months still haunt me, especially at night. No doctor EVER thought to ask, “Why does this young woman have such a unique health history?” No one thought to do genetic testing or to ask questions. They all let me slide through the cracks.

I’m here and I am still fighting. I will always fight, until I can’t anymore. I am here to stand up for others like me. I am here to inspire others to advocate for themselves and to not give up. I am still here.

Even though my story isn’t over, I still continue with sleep apnea and my aortic valve has hypertrophied. I will need open heart surgery once again, with a pig valve and possibly in the near future. I will need a new pacemaker years to come. I don’t have insurance so my sleep apnea is not being treated. I don’t know what to expect in the future but I do know that I will love every moment that I am given.

  • Educate yourself on your health conditions.
  • Get every medical record and keep a file
  • Print information on your rare diseases or disorders to give to your medical professionals
  • Find a support group or therapist
  • Eat healthy and stay hydrated
Health, Unveiling Invisible Illnesses

I Believe You

When your medical team thinks you are just stressed or maybe have a common ailment and never test you for anything out of the norm, it can be frustrating. You feel lost and alone and just want answers. Sometimes this process can last years!

Up to 12 million people are misdiagnosed each year (1 in 20) and medical errors are the THIRD leading cause of death in the US (CDC, 2006) and kill 150,000 people per year. It is also disheartening when friends and family start to question you and think that maybe it is in your head. I have been there!

I am lucky to have a beautiful support system and people who care about me and I have made leaps with my health care, though I still have much more to discover. Advocacy is so important. Though my hands are tied due to finances and lack of health insurance, I still do a ton of research regularly and do what is best for my health and wellbeing with nutrition, detoxing my body, supplements and cutting out emotional toxins. If you are suffering from anything, I got your back. I am on your side. I am always here. Don’t ever be afraid to reach out.