Health, photography, Unveiling Invisible Illnesses

Astrid is my 12 year old daughter and she also has Ehlers Danlos Syndrome and POTS. She is incredibly strong, talented and beautiful.

Astrid is very athletic and she keeps her Postural Orthostatic Tachycardia Syndrome (POTS) under control by staying hydrated.

Check out our most recent photo shoot in downtown Eau Gallie Art District in Melbourne, Florida.

Photos by Misti Blu

Danceware by Mirella

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, 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.

Health

I crap. You crap. We all crap.

💩💩Let’s talk about poop. 💩💩

It’s a shitty conversation, but it’s super important. I want to dump this information on you so that you can heal your body and detox. Being constipated is literally a buildup of waste in your body. It can back up all the way up to your ribs and press on your organs, keeping toxins trapped inside your body.

I had a conversation today, with my friend Laila, about how important our digestive system is. We were discussing how no one ever wants to talk about this daily, natural event that occurs and we often dismiss the value of a healthy gut.

  • Drink more water! If your are dehydrated, so are your intestines. Take your weight and divide it in half. That is the amount of ounces the average person need to drink daily. For example, if you weigh 175 pounds, you should drink 75 ounces of water per day.
  • Correct your bowel flora. With food intolerances, unknown allergies, over use of antibiotics and processed foods, our gut flora gets wiped out and this can wreak havoc on your body.
  • Ladies, straining to poo may cause your pelvic floor to weaken by causing damage to the muscles.
  • Irritable Bowel Syndrome (IBS) is your body begging you to change your diet. This can cause malabsorption, anxiety and bloating. Stop feeling crappy and work on fixing your gut so that you can absorb all the nutrients your body needs.
  • Arbonne has Digestion Plus, Daily Fiber Boost, Greens Balance, Herbal Detox Tea and Protein Shakes to help get your body on track.
  • Click here to sign up as a Preferred Client for discounts, free shipping and freebies
  • Health

    What is Banana Bag Oral Solution?

    Banana Bag Oral Solution is a specially formulated solution for vitamin deficiencies and dehydration. It is a drink mix and can replace the costly IV from an emergency room visit. The term “Banana Bag” is from the medical field, referencing IV fluids. The drink does not taste like bananas. In fact, it has lemon-lime taste to it. I prefer it to sugary sports drinks that are loaded with dyes, preservatives and artificial flavors. It is also gluten-free.

    Banana Bag has been a huge hit for those with Postural Orthostatic Tachycardia Syndrome and also other Dysautonomia patients. It is beneficial for athletes, hangovers, the chronically ill, people with gut issues causing malabsorption and keeping general health issues at bay that are caused by deficiencies and dehydration.

    This reliable solution restores the body with electrolytes and vital nutrients. It has been a crucial staple in managing my health, especially living with the Florida heat.

    No sweeteners | No preservatives | No dyes | No artificial ingredients | No artificial flavors | No GMOs | No gluten.

    Health, Unveiling Invisible Illnesses

    Sleep Apnea

    I remember when I was 16, telling a doctor that I stopped breathing in my sleep. “No. Not at your age. I don’t believe you.”

    For the last 5 months, I fought for a sleep study. I was denied because of my age and weight. After making several calls, hours on the phone on different occasions, I finally got approved.

    Two days after my test I was called and referred to a pulmonologist. In 4 hours and 13 minutes, I stopped breathing 27 times with an average duration of 49 seconds. The highest duration was 117 seconds!

    My point is, don’t ever give up. Keep fighting and I believe you.

    It’s a bittersweet sweet moment to get these results back. Part of my is relieved to finally get help, answers and care as well as prove that I wasn’t crazy and to not be dismissed anymore. The other part of me wishes they were right and that I was just a hypochondriac.

    Body and Beauty, Health, Unveiling Invisible Illnesses

    Unveiling Invisible Illnesses – War Paint

    I always try to smooth my hair and conceal my tired eyes. I always dust on a peachy pink blush and a fun lip color, regardless of how I feel. This is the mask of an invisible illness warrior. Occasionally, there are days that I struggle to even lift a limb to put on my war paint. On those days when I bare a naked face and join society, I get told over and over and over again, “You look tired.”

    When someone looks exhausted or drained, instead try asking if they need anything or offer help, a compliment or anything positive. I wear makeup to hide when my face goes pale while my blood pressure drops and my body starts going numb, ringing in my ears or the sound of my pulse takes over while my vision starts to sparkle or fade. I wear lipstick to hide the loss of color while I brace myself against the wall or casually sit down and continue to smile and listen to your day.

    Every day is a struggle, whether it is big or small. On the really bad days, it is a lonely world and it feels like no one understand. When you try to reach out, no one listens because they think you are young and healthy and perfectly fine. It feels dismissive and disheartening, quiet and empty as you hope for tomorrow to be a better day.