Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses with Natalie Rose – Lupus

Natalie is a very goal-oriented, adventure-seeking, well poised young woman. She also has that laid-back but tough vibe. An invisible illness is an illness that is not apparent or obvious. Looking at Natalie, you would see many other qualities about her and never jump to an illness. However, she has Lupus.

Lupus is an autoimmune disease that causes fevers, joint pain, fatigue, rashes, mouth ulcers, hair loss, sensitivity to the sun, pain and a wide range of various symptoms caused by your immune system attacking your healthy cells. Lupus comes in flares. It also must be managed and under control or it can be very scary and complicated, especially if your flare consists of a vital organ.

As you can imagine, Lupus is hard to diagnose with so many symptoms. When you are not currently experiencing a flare, your blood work levels can look normal at that time. Getting in with specialists can take a long time as well. This also makes it complicated for diagnosis. There are twelve million misdiagnosis per year. Natalie shares her story in hopes of raising awareness and helping others in the same boat.

What is your official diagnosis and when were you diagnosed?

Systemic Lupus Erythematosus (SLE). I was diagnosed about 2 ½ years ago with Discoid Lupus, but my doctor warned me that SLE was still a possibility. About a year after that, a flare up landed me in the ICU; after seeing several different doctors, I was diagnosed with SLE.

Looking back, how long where you having symptoms before you got diagnosed?

At least a year or two. I had skin legions on my head and every doctor I saw diagnosed it as a fungus. After being on serious systemic fungal medications and seeing no change, I finally found a dermatologist who biopsied and diagnosed my legions. I always dismissed the joint pain as a side effect of being in the service industry for so long, but it turns out that my immune system was attacking my joints. I thought it was normal for people to be exhausted all the time, turns out it’s a symptom called “chronic fatigue.”

What do you do to keep your symptoms managed?

The most important thing that I had to learn was stress management. I quit the job that I hated. I’ve ended several relationships that caused me more stress than happiness. I learned how to either avoid stressful situations or take them in stride, rather than let them consume me. I wear sunscreen every day and do my best to cover up when I’m in the sun. One of the symptoms of lupus is being extremely photosensitive. Not only do I burn very easily, but it contributes to my other symptoms. A day in the sun usually means a few days of chronic fatigue and worse than usual joint pain. I try to get appropriate rest. Sometimes I have to bail on something I really wanted to do so I don’t push myself too hard and end up sick. It’s all about knowing your body and understanding your flare ups.

What advice could you offer to someone who is currently struggling with the same illness?

Keep a diary of symptoms so you can understand what leads to flare ups in order to try to prevent them. Don’t push yourself when you’re not feeling well, and certainly don’t let anyone make you feel bad for taking care of yourself first. Don’t let it hold you back though. I still enjoy all my outdoor hobbies, I just cover up and wear sunscreen. I’m still a career woman in a stressful field, I just manage my stress well. Most importantly, I would say not to waste time with people who are dismissive of your disease.

What is the scariest moment you have experienced because of your illness?

The time I ended up in the ICU. I woke up with a sore throat, and 10 hours later I couldn’t swallow, and was having trouble breathing. I had a simple cold but my immune system attacked my lymph nodes. I spent 3 days in the hospital on a high dose of steroids. I couldn’t eat or drink for a few days, and still had trouble for a while after that. While in the hospital I saw multiple hospitalists, my personal physician, an ENT doctor, a rheumatologist, and even an infectious disease doctor. They ran every test imaginable and just came back with the response, “looks like it was lupus”. It was by far the most painful and frightening experience of my life. Every time I get sick I worry if I’ll end up in that same situation again, or worse.

How do people react when they discover you have an invisible illness and how does that make you feel?

Most people don’t know what Lupus is, or they have some hazy image in their mind from episodes of House. For the most part, people are dismissive or just don’t understand. I think because you look happy, healthy, and young, they just assume that it’s not a big deal or not real. People often tell me that they’re “sorry.” I don’t want anyone to feel sorry for me. My life is pretty great, I just have an autoimmune disease that I have to live with. It’s really disappointing when people are dismissive of my symptoms. I don’t like or need anyone’s sympathy, but sometimes I would like to be able to rant about how terrible I feel without feeling judged or trivialized. I don’t like being held back by anything, so I get rather upset when a flare up causes me to call out of work, or bail on something that I want to do. It helps to be able to talk about it sometimes.

What way can others show support to someone with an invisible illness?

Just listen to us and try to be understanding. We know how to take care of ourselves, but sometimes it’s frustrating and overwhelming and we need a shoulder to cry on. If you’re in a relationship with someone who struggles with an invisible illness you should read up about it and be there for them as best you can. Don’t downplay or ignore their symptoms. Personally, I feel like laughter is the best medicine. My friends will make jokes about me being a vampire or how I need to start carrying a parasol. I much prefer that over someone telling me how sorry they are or being treated like I’m fragile.

Favorite quote:

When the going gets weird, the weird turn pro. -Hunter S. Thompson

Three things you can’t live without:

Great food, great friends, and my dog.

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

Haha, I have a ton of goals! Anyone that knows me would describe me as very goal oriented. My goals are a little different than most because I’m not going to have children. In five years, I want to own my own home somewhere close to the water. Preferably on a creek somewhere in Melbourne. I plan on being very successful in my career. I’m working on getting in shape, so in five years I plan to be on a great work-out routine and to be healthy and fit. I just recently completed my dive certification which was one of my goals. Now I want to have all the certifications I need to be able to dive wrecks and caves. I plan to be travelling a lot and exploring beautiful new places as much as work will allow.

*Photos taken at Traditionals Cuts, Shaves and Brews in Eau Gallie Arts District (Melbourne, Florida) by Misti Blu

Unveiling Invisible Illnesses

Unveiling Invisible Illnesses Documentary

Unveiling Invisible Illnesses – Documentary

First interview down!

I am looking for more volunteers to share their story on struggles with invisible illnesses, misdiagnosis, medical negligence, rare diseases or anyone in the medical field or a loved one who wants to share their side.

mistibludream@gmail.com

@mistibluday

Health

Fudgey Vegan Holiday Brownies

Fudgey Vegan Holiday Brownies

Featured in The Beachside Resident December 2018 issue

Maybe you don’t have time to whip up some baked goods from scratch but you still want to bring something impressive to the table that everyone can eat. I always stick to organic labels to avoid extra fillers, pesticides and chemicals. Organic tend to list healthier ingredients. Don’t be fooled with “natural” or “organic” labels unless you see the USDA stamp of approval. Gluten-free is the route I go. Most of us have a relative with sensitivities so why not be safe?

You will need:

• Box of organic GF brownie mix

• Cooked sweet potato

• Applesauce

• Cinnamon or Healing Sprinkles Spice Blend

• Carob chips or cacao nibs

• Coconut flakes (optional)

• Cashews (optional)

• Coconut oil

Preheat oven as instructed. In a bowl, combine brownie mix and substitute eggs for a half cup of applesauce and half a cup of cooked, mashed sweet potato. Add water or oil as directed on the box. You can add more sweet potato if you want to add less oil. I usually add just a tablespoon of coconut oil instead of the recommended amount. Sprinkle a generous amount of cinnamon and your choice of carob chips or cacao nibs. After blending the mixture, top with chopped raw cashews and coconut flakes. Cook in the oven for 10 minutes over recommended time. Now you have an almost made from scratch, rogue batch of brownies! I like to drizzle a little CBD oil on mine.

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, coffee 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

PTHD – Post Traumatic Health Disorder

A feeling grows over you, nuzzling into the pit of your stomach that buzzes out to your limbs. It’s like you are standing at the edge of cliff but there is no beautiful view, just a worry so strong that it consumes you. Your blood feels thick as it boils through your veins, dragging it’s gloom to the surface of your skin, begging to get out. This is the feeling that takes over your brain, your gut and your heart. It’s the aftershock of a traumatic event that creeps up on you, tapping you on the shoulder and pouring itself into your bones.

Post Traumatic Health Disorder is a name I thought of to put a title on a common feeling that many people with health issues can relate to. Health anxiety and depression from chronic illness are frequent concerns for many people.

Common struggles for people with chronic illness:

  • Missing your previous, healthier life and adjusting to a change due to health issues
  • Having to cancel on friends and family often or change plans because of health
  • Feeling secluded and like no one understands you
  • Financial issues due to lack of work or missing work from illness
  • Feeling exhausted and having a hard time keeping up with minor tasks
  • Not talking about how you feel or your feelings because you feel like a burden or too like you are being too negative
  • Insurance issues, scheduling conflicts and other general concerns

I often wonder why doctors don’t ask their patients how they are coping with their health issues. For some, they hide their anxiety or depression out of fear that their health issues will be dismissed and with anxiety. Why can’t therapy or counseling be offered or suggested after a life changing surgery or health event?

For me personally, my traumatic health memories sometimes even follow me to bed and enter my dreams. Having a small health scare, like a few palpitations in a row, can trigger PTHD and put a damper on the rest of my day. Like a dark cloud following me around all day, I can’t help but think of moments when my heart almost gave up for good. My lips turned dusky as everything around me faded out. My heart was struggling and chaotic as if each beat could be the last. My limbs lie cold on the ground as I struggle to take tiny drops of air into my lungs. My life did not flash before my eyes but a sinking feeling of worry about my kids growing up without a mother and how could I just meet the love of my life and be taken from this world from my family that I love so much.

It’s not fair.

I am not ready yet.

Please.

Help.

Every palpitation I get is a flashback of these moments. Some days are so beautiful and the sun shines, blanketing everything in gold. The air is perfect and you have everything the be grateful for but still sometimes those moments tickle your neck because you are so scared to lose everything.

You are not alone.

Finding local or online support groups are helpful for finding answers and a tribe of others who understand what you have gone through or what you may be going through. Seeking therapy is also a beneficial way to learn how to cope and work though stress. You are not alone. Burying your feelings or sweeping them under the rug is not a way to get by. Dealing with your trauma is nothing to be ashamed of or ignore.

Health, Unveiling Invisible Illnesses

Living With Chronic Pain

What does it feels like to live with chronic pain? It’s something that you never really get a break from and you can’t remember not feeling it.

At the end of a long day, it feels like you just did the most intense workout the night before, and climbed 50 flights of stairs while carrying someone up. Then, you had to swim a mile in the ocean and forgot to stretch, and you were forced to sleep on the pavement. For me, this is how my body feels on a daily basis.

Every single fiber of my being aches and it always has. This is my normal and something I have grown to live with. I still go to the grocery store, cook my family dinner, make it to events and juggle school, parenting and work. I used to never talk about this because I never knew it wasn’t normal to feel like your scalp was severely bruised because you wore your hair up or switched parts, or that your legs weren’t supposed to feel like they were run over by a truck after a day of work, or like you drank a bottle of tequila the night before (only you don’t actually drink) and have a massive hangover. I didn’t know it wasn’t normal to feel like your feet have been shattered into a hundred pieces at the end of the day, or wake up each night with your back spasming, and let’s not forget the classic pounding headache and abdominal cramps.

I have been told in previous relationships that I was a hypochondriac, or always complaining, so I trained myself to suck it up. Who wants to complain all day or succumb to a life in bed? I can’t be in bed too long anyway. This is my every single day. This is me. So, when you see someone or meet someone, know that we are all fighting our own battles. Pain is just one small layer of the onion. Things are not always what they seem.

Photo by Amanda Eversz

Location: Rockledge Gardens

Dress by The King’s Daughter Bridal Boutique & Formal Wear