Health, Unveiling Invisible Illnesses

How To Be There For Someone With Chronic Illnesses

Don’t ask an open-ended question in regards to helping out.

    An example is asking someone if there is anything you can do to help; this is too broad of an offer. Though it is very kind, most likely the person you offered help to will feel too embarrassed to think of a specific thing. Instead, offer specific help, such as a housecleaning or dropping off dinner on an assigned night. Not only is this assistance incredibly helpful, but you also surpassed the uneasy ice breaker. No one knows what scope of help you are willing to give, nor do they want to feel like they might be asking too much. So, if you truly want your assistance redeemed then don’t give them the option to think and ask… just tell them when and how.

Let them vent.

    You don’t have to have any answers or advice, just listen. We are used to small talk and the autopilot response, “I am fine, and you?” Advice is usually not something we are looking for unless we ask. It is likely we are very familiar with our health and have been living with chronic illnesses for some time. We tend to research, educate and advocate for our health. However, if we don’t feel like talking about it then just being present and distracting us from our health is a nice break. But when we do want to open up and vent about our health, just listen.

We are not lazy.

    “It must be nice to be in bed all day,” is going to get you the asshole award. Trust me, we would rather have a life or be out at the beach, out with friends or working on a fun project, but instead, we are prisoners to our own body. Be mindful that spending the day in bed is not as glorious as it sounds for a chronically ill person… that means it was a rough day.

“You don’t look sick,”

    or “you are too young and healthy to be sick,” is something that we hear often and it only shows ignorance and a lack of empathy. Invisible illnesses are not obvious or blatantly apparent and because of this, we are often dismissed by medical professionals or deemed drug seekers. When you say that, it feels like a betrayal and a reminder that no one understands. We may post our good day selfies or fun outing but what you don’t see is the 24/7 pain, depression and grieving, the tears, the complications, and multiple doctors visits. You see a mask, warrior paint and the fake normal version of ourselves. We just hide it well.

Gift suggestions:

    • If we are in the hospital or recovering from surgery, there are many little gift suggestions. After being asked by a friend what to bring to a hospital visit, I came up with some awesome go-to items: face wipes, lip balm, books, magazines, fuzzy blanket, essential oils, snacks, headphones or anything from my

Amazon Spoonie List

    • or

Wildling Apothecary

    .

Patience.

    We feel guilt and a whirlwind of emotions for having a chronic illness and for anyone who is involved. Your patience and support mean the world to us, even if we have a hard time showing it. Don’t be afraid to point out our flaws but please try to be understanding and forgiving, as sometimes we don’t realize our suffering is showing in ways that can affect you, like an attitude or resting bitch face. Just tell us it’s okay and help is through instead of getting mad and angry.

The Spoon Theory

    . We have a name that we call ourselves: spoonies. There is a spoon theory. In a nutshell, we have about twelve spoons per day. Each spoon represents our energy. Taking a shower might cost 2 spoons and cleaning our bathroom is about 5 spoons. Running errands and a doctors appointment takes about 5 more spoons. Then we are out of spoons that day, meaning we are tapped out and exhausted. Sometimes we even have to borrow spoons from the following day, leaving us bed-bound. Many of us are trying to stretch our spoons out through the day, so when we cancel last minute, try not to get upset. Chances are we are pretty bummed about it but ran out of spoons. We still love being invited though!

Thank you for caring enough to read this.

Healthy Food

Dairy-free Shrimp Lemon Basil Linguini

What you will need:

Earth Balance Vegan Butter

Follow Your Heart Vegan “Parmesan”

Turmeric

Lemon Pepper

Linguini (Gluten-free or your preference)

Fresh Organic Basil

Onion Powder

Peeled and De-veined shrimp

Olive Oil

Lemon

Instructions:

Boil pasta as instructed. In a separate pan, sauté shrimp in vegan butter with turmeric, lemon pepper, onion powder and juice of one lemon. When the pasta is cooked, strain water and toss back into the warm pot to add a drizzle of olive oil and lemon pepper. Serve pasta onto a bowl or plate and top with Parmesan. Then, pour sautéed shrimp over pasta and Parmesan and top with fresh basil.

This dinner contains less cholesterol, though the pasta is a carb, you can always substitute with an alternative of your choice or even a fresh bed of spinach. If you are vegan, you can substitute with tofu or fresh veggies. If you are enjoying a glass of white wine with your dinner, splash a little in the pan while sautéing the shrimp for added flavor. There are always plenty of ways to customize each dish. Turmeric has a nice flavor but I love cooking with it for the added health benefits: anti-inflammation.

Enjoy and subscribe to my blog!

Healthy Food

Pineapple Fried Rice

Pineapple Fried Rice

Published in The Beachside Resident January 2019 Issue

Ingredients:

Fresh pineapple

Rice

Edamame

Chopped onion

Turmeric

Ginger

Gluten Free Soy Sauce

Coconut oil

Scallions

Garlic salt

Egg

Sriracha

Shredded carrots

Cashews

Shrimp (can substitute chicken or tofu)

Directions:

I always make enough to feed an army, so I will share the instructions for a large portion. There will be plenty for a dinner party and lunch the next day. Cut the measurements in half if you don’t want to make a large amount.

Boil two cups of rice in four cups of water. In a sauté pan, sauté chopped 1/3 of a white onion and one pound of shrimp with turmeric and garlic seasoning in coconut oil. Steam the edamame; I usually just get the microwavable bag. As I cook my ingredients, I pour them into a large bowl or casserole dish to mix at the end. When the shrimp and onions are cooked, pour in the large bowl and start sautéing the pineapple and carrots. After the pineapple and carrots are cooked or warmed up, toss them into the bowl and add more coconut oil to the pan to toast the cashews. The last step with the sauté pan is to fry the rice after it is done cooking. Toss in gluten-free soy sauce and two eggs and fry until the eggs are fully cooked. Mix everything in the large bowl, then top with green onions and sriracha.

I cook some of the ingredients separately because they won’t all fit in a pan (unless you cook a smaller amount). Everything cooks quickly, so why not break it up instead of having all of the burners going at once. You can also add broccoli, red peppers and other fresh veggies to this dish. I added quinoa in my last batch. You can serve this dish inside the pineapple for a fun presentation.

Health, Unveiling Invisible Illnesses

Moving Forward in 2019

2018 was a good year, despite having cancer, multiple surgeries and a few ups and downs. 2017 was awful and scary. My heart was at it’s worst. My POTS flare was the worst I ever had in my life. No doctors were on my side. I was having potentially fatal heart arrhythmias and I am shocked that I am here to tell about it. I am forever grateful for my pacemaker and supportive family.

2018 was the year I got my health under control. I learned my body and what I can handle. I take care of myself and minimize toxins in my life. I advocate for myself and after 33 years I found out what was wrong with me and that it isn’t normal to feel pain every day, among a million other things. Despite no cure, simply having an answer has made my life better by educating myself, spreading awareness for others and learning about what is best for my health, as opposed to being in the dark.

2019 is here and we all say that each new rotation around the sun will be the best ever, but I have learned that it is okay to feel. It is not okay to plaster fake positivity over emotions. I set goals daily, weekly, monthly, yearly and will continue to work on every aspect of my life whether it is day 1 or day 365.

Sometimes I have bad days and I hate that it affects others, especially those who love and care about me. I am not going to share just my perfect moments and give people Sunday’s best version of myself. I am human. I know I am not easy to deal with sometimes. I am sorry, but this is me. I’m working on it.

This year, for me, is about acceptance and moving forward. I have been grieving the reality of my health and the limitations and life changes that come with it. I was angry. I was in denial. It is important to focus on the good things in life but that doesn’t mean you need to pretend that tough times exist…. just don’t dwell there. I accept the cards I am dealt. I refuse to be in denial, ashamed or to hide, and will learn how to cope better and continue to improve the things that I can control.

I hope you all are inspired by a fresh start but don’t forget that you can start fresh anytime. Each day is a new story to write. We are in control of how we navigate through our story and how we handle the things life throws at us. Pick your own adventure and make it a good one.

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

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

Salon Life

Twelve Things Your Stylist Wishes You Knew

Some of us hair stylists work long days and occasionally, during our busy season, do not even get a day off. We are make shift psychiatrists and usually end up doing an extra toner on someone instead of eating lunch.

Below are some helpful tips your stylist wishes you knew.

1. Pre-book

Seriously, texting us at 11pm for an early appointment the next morning is something that happens way too often. Let us sleep, poop, have a life, eat and watch Netflix! We are so grateful to have you choose us as your stylist but we are also humans. Chances are, a 4pm “can you squeeze me in today” text is not going to happen. I guess it doesn’t hurt to try but please try to book in advance. Oftentimes we hate saying no and skip our lunch break or personal plans to squeeze you in. We much prefer to give you an appointment that won’t be rushed while we are starving and holding our bladder all day.

2. We are not magicians

Whether it’s a short, fine haired bride who wants a voluptuous updo, or a curly client who brings in a photo of color ideas on straight hair, please keep in mind that we are not magicians. It is best to be realistic and stay in your range. Sometimes clients fall in love with the face or the style and look of the photo they reference to for inspiration. I have seen photos that even look exactly how their hair is already but they just can’t see it while idolizing over a photoshopped face. Many of the inspiration photos have hair extensions or are photo shopped, have filters on them, have been retouched or an adjusted saturation.

3. Dirty hair

Please come in with clean, dry hair. If you walk in with thick or long hair and it is damp, you will cost us at least an extra 15-30 minutes and put us behind schedule, which will make the next client late. Typically stylists try to book themselves solid and even miss lunch and breaks because certain clients take longer, like having a client who has thicker hair than expected or their color is more of a correction and so on. Also, if you have not washed your hair in several days, it is the equivalent of getting a pedicure without shaving your legs or eating a peanut butter and jelly sandwich before seeing the dentist. It also can make the color more resistant to penetrate the hair shaft if it is coated in products and oil. So, not only is good etiquette  but also ensures the quality of your service.

4. How much do you charge? 

We cannot give you an absolute price on your services until we see your hair. Consultations are free with most stylist to get a proper quote. There is a baseline, however, depending on the length, texture, density, previous services and what you want compared to what you have now. There are many factors in estimating a price. For instance, if you book a color and a cut and walk in with black hair and want to be platinum and your hair is thick and long, that price is dramatically different that a simple root touch up. That is also a color correction and not a typical color service, which may require your stylist rescheduling you due to not blocking off an adequate amount of time for your service.

5. Friends and family deals

Friends are wonderful clients but sometimes the line gets blurred and those close to us expect free or discounted services. What they may not realize is that sometimes that $30 that you throw us for a $150 service barely even covers the product cost. This is our livelihood and many of us pay for our own insurance and products, education, tools, and try to make ends meet with whatever is leftover. Please keep that in mind when asking a friend or family to hook you up with a service. Same goes for trading services: make sure the trade is fair. Trading a two hour color service with multiple products and double processing done, a 45 minute service in return is not a fair trade. Also, it should be full price in trade for matching full price, not discounted service in trade for full price service. Just be fair or your deal won’t stand for long.

6. Late and no shows

Please be assured that if we are late it is because of some of the above reasons. Know that we are panicking that you are mad at us and plotting your next appointment with your new stylist, while have been holding our bladder since we woke up this morning, and are on the verge of pissing our pants. I know it sounds contradicting to ask that if you are late to please inform us when sometimes we are the late one. Occasionally it helps us because we are behind and thank god, so are you. However, sometimes it puts us far behind and now every client after you is waiting past their appointment time. Also, there are times I have personally come in for one client and not only dragged my children out of bed to rush them to a sitter (on our one day off to squeeze you) in and then you do not show? Helpful hint: If you are late, please bring a present! We all love coffee. It helps us forget you were late, I swear.

7. Dance party in our chair

Please try to remain seated and somewhat still while getting your fabulous new haircut. We tend to get caught up and excited to see eachother or are having a conversation with the person next to you and you are turning your head to make eye contact. Though, it is absolutely adorable that you are making new friends and we are catching up on the latest gossip. It is fun to laugh and catch up but sometimes we need to multitask and sit still. Also, keep in mind that your head is down when looking on your phone. Heads up please. And, thank you for checking in on Facebook that you were getting your hair done by me! We love it when you share us with your friends.

8. Shampooing tips

Shampoo your scalp only. When rinsing, the shampoo will glide down the hair and into the drain. You do not need to shampoo your ends. Your ends are  getting sufficient shampoo through the rinse and is more dry and fragile than the rest of your hair. Your scalp produces oils and is strong and healthy and can handle a good scrub. When conditioning, it is nearly the opposite. Your scalp produces healthy hair and natural oils, therefore you do not need to condition the scalp or if you do you may have an oily appearance. Condition the midshaft to ends which may be chemically processed and often passed over with heated tools. If you have had a few days go by without shampooing your hair and many coats of products it may be best to shampoo twice. In fact, I recommend it.

9. Hair ties

In the summertime it can get very hot! Maybe it is time to hit the gym or perhaps you just wanted to sleep those few extra minutes, so you tossed your hair up in a messy bun. Well, what you may not know because you cannot see it, is that when you apply friction from a hair tie several times a day or even just several times a week, you are eroding the hair shaft and causing breakage that is not fixable. Many, many times I see this as I part off the nape section to begin a haircut and it is inches shorter. Try using bobby pins or clips instead. I always know a ponytail wearer when they sit in my chair, due to the line of breakage.

10. Blondes

Though it can be done beautifully, I still consider this the unicorn of hair colors. It is a lot of work, high maintenance and a very proud accomplishment to your stylist when complete. Please understand that this is a process and we very much value the integrity of your hair and want the end result to be healthy. We are not trying to rip you off and we certainly do not want you walking out the door with our name attached to your hair if it is not looking amazing. Be patient and expect to pay more than you are used to. Same for the  fashion colors like purple and teal. We have to go almost platinum to achieve these looks and they require several processes. They are hard to keep in which equals extra appointments to maintain. Also, we absolutely hate the grey trend. Going from black to grey in one session is not going to happen. It’s so much maintenance too. We hate feeling like we disappoint you when you don’t get that instantly gratifying makeover.

11. Swimming

Before you jump into a pool full of chemicals that will dull the beautiful color we just did, please wet your hair in the shower first. Your hair is like a sponge and if already soaking in the tap water, the chlorine or salt water will roll off of the hair instead of being soaked up first. I prefer to use a leave in conditioner when I hit the sun. Keep that hair protected!

12. Give us one more chance

When you first meet your new stylist, keep in mind we are total strangers. Occasionally, it takes more than one appointment to get to know your style and how well your hair lifts (if your hair is stubborn or not) and how you wear your hair. I recommend coming to your first appointment with your hair styled how you wear it daily. I have had some clients share a photo of their good hair days to reference to. When we see you, we see your 6-8 week fade out with your hair not styled and we are expected to know exactly your style. Let me get to know you!

If you call to make an appointment and start out by saying that you are super picky or have seen several stylists and can’t be happy, we are all going to fight over not taking you. It can definitely be difficult finding the right stylist for you but after so many attempts, it may be time to ask yourself if you are the problem. You are beautiful no matter what, but something is making you unhappy about yourself.

Hopefully this will bridge the gap for some concerns you or your stylist may have.

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.