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.

Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Stargardt Disease

Stargardt Disease, also known as macular dystrophy, is a genetic eye disease that causes progressive damage and degeneration of the macula. The macula is responsible for seeing sharp straight-ahead vision. The ABCA4 gene is linked to macular degeneration, which is central vision loss. The light sensitive cells in the retina deteriorate and affect the ability to fine focus, primarily the central vision.

An invisible illness is a disability or illness that is not immediately apparent or visible. These illnesses significantly impair daily living and normal activities while the individual appears normal and healthy. It is my mission to raise awareness on each chronic illness, lessen discrimination from the public, reduce misdiagnosis, to help others feel connected and not alone with their diagnosis, to share our stories to friends and loved ones for better understanding.

I interviewed Alyssa Hullinger to learn more about her invisible illness so that I could share her story. The first photo I took was to test my camera settings and the focus was on the background, all around Alyssa and not on her. After uploading the images, I viewed that first photo and realized: that is probably how she see everyone.

What is your official diagnosis?

Stargardt Disease

When did you get diagnosed and how long did it take after initial symptoms?

I began seeing some “spots” in June of 2016. I was 7 months pregnant with my daughter at the time. In January of 2017, I went for a routine eye exam and found it very difficult to read the chart, specifically with my right eye. My eye dr is a close friend, she checked me out and brought in the ophthalmologist to ask his opinion. After he had a look, they immediately brought me in for a CT of both eyes and recommended I meet with a retina specialist. I met with the retina specialist in June and he suspected one of two genetic diseases that affect the macula. He recommended I see the genetic specialist at Bascom Palmer in Miami. I was diagnosed with stargardt’s by the genetic specialist in October of 2017.

What advice do you have for anyone struggling with this same diagnosis?

Stargardt’s is a degenerative disease and not one person is alike. I was angry for quite a while when I found out that I “should” expect to completely lose my central vision. The disease takes away the ability to see fine details. It is terrifying.

I would tell them that it’s ok to feel whatever emotions it is that they are feeling. Feel it out and then discard it. Because focusing on what you are afraid of will only bring it to the forefront. Be grateful for the things you can still see. Look at things. Really look at them. All of the time. Don’t miss any opportunity to watch everything. Study the faces and hands and bodies of the people you love most. Be in full time gratitude for all of the things you can see right now.

What are three things you can’t live without?

Of course my husband, my daughter and our new baby on the way. My family is my whole world. My husband is my rock.

Good coffee!

Adaptability.

Favorite quote:

It may be that when we no longer know what to do,

we have come to our real work,

and that when we no longer know which way to go,

we have begun our real journey.

The mind that is not baffled is not employed.

The impeded stream is the one that sings.

–Wendell Berry

What are your daily struggles?

My biggest challenge is seeing faces. It’s so disheartening to not recognize people I have known forever. It is very challenging to make out the details in faces. Especially in backlit or dim lighting. The other day, I held out my hand to introduce myself to a person I’ve known for years. Also, reading to my 2 year old. I have a light that I clip on to books to be able to see a little better. It’s still a struggle sometimes to see words written in fancy fonts. Again, the fine details are challenging. I’ve learned to take my time when reading to her. She doesn’t understand why I’m reading slow and often becomes disinterested. Driving is becoming more challenging as well. I stopped driving at night (unless it’s a very short distance) and I won’t drive in places that I don’t know, even in daylight. I sometimes need to be reminded that I already know everything will be alright.

How do people respond when they find out about your diagnosis?

The most frustrating and most common response is when people ask “can’t you wear glasses?” I do wear contact lenses and/or glasses for near sightedness which is unrelated to this disease. Since my diagnosis, I have been getting my acuity tested every three months to help fine tune the sharpness of what I can see; my eye dr is magic. But no, there aren’t glasses that can “cure” this. If it was that easy of a fix, I certainly would already have them! I have kind of crafted a short description of stargardt’s to explain why my vision is altered. Usually the response after my speech is “that sucks!” Most people, especially my coworkers at my part time job, are super helpful when I ask what something says or for help finding things. I’m so grateful for their patience and kindness.

What inspires you and keeps you motivated despite your invisible illness?

My dear sweet great friend, Katy is one of my sources of inspiration. She rocked and lived like no one I have ever known, and she continues to rock on. Since the moment we met, she has inspired me to be better and do better. Also,my brother, Jimmie. No one works harder then he does. On top of his tireless dedication and determination, he is so kind and humble and generous. He is full of heart and his heart is love for his family and career.

My motivation is my family, of course. My husband has my back, always, and making sure to teach our children that there is always another way; we just have to get back up and keep trying. Also, I’m blessed with incredibly supportive, strong friends.

Health, mental health

Battling Holiday Blues

Battling Holiday Blues
It’s that time of year again when everyone is filled with cheer and joy. Evenings are filled with holiday music, spiked eggnog and colorful lights glimmer throughout the streets and sparkling on homes. But the truth is, not everyone is filled with joy this time of year. For some, they may be missing a loved one or they are financially burdened. Many people live paycheck to paycheck and having to spend an entire month’s income on gifts that add up to the same price of your bills, is beyond stressful. Here are a few ways to lighten the load and help you win this year’s holiday battle of the blues:
  • Support Small Businesses
Amazon is so convenient and don’t we all love it? However, consider doing a portion of your shopping with local vendors or small businesses. Supporting a mom and pop shop can help that family to afford putting their child in dance class or braces on their son. You are supporting someone’s dream. You are also buying unique and thoughtful gifts. Small businesses don’t carry genetic watered down products. Their goods are full of love and dreams. There is more of a creative and personal feel to shopping small or local. Plus, you are supporting your community. 
  • Create Memories or Homemade Goods
  • If you are on a budget but still want to give gifts this year, surely you can afford memories or make something. You can prevent your bank account from causing you financial grief, which can allow you to relax and enjoy the season a little more. For example, gift your parents a homemade dinner and game night that you host. They can choose the date and come over and be spoiled. Or, gift your significant other a coupon book for massages, dinner, cleaning and some x-rated fun. Gift your friend or sister a night of babysitting. These are all thoughtful, free and memorable. Another option is making homemade gifts like candles, scrubs, art or even baked goods. 
  • Self Care 
  • During times of stress, we forget to take care of ourselves. Maybe skip a night out and listen to music or read a book instead. Decompress with a bath and wine. Hell, a bath in wine! Call old friends or family and catch up on the phone while you pamper yourself. Treat yourself to a massage. Mental health is just as important as physical health. Drinking plenty of fluids and making sure your nutrition is not suffering, is also important. Vitamin D and folate deficiencies can cause depression and anxiety. Pro tip: folic acid is a synthetic version of folate that many of us can not process; avoid it and take a bioactive or methylated version of folate. Just like the saying, “you can’t pour from an empty cup,” you have to take care of yourself. Herbal teas are a good way to maintain your stress levels. Kava, valerian root, lemon balm, and ashwagandha root are great relaxing teas. CBD oil is a natural option for managing stress, anxiety, and difficulty sleeping.
  • Volunteer 
  • If you still feel like you are in a funk, volunteering is an excellent way to bring you back to reality. Sometimes helping others in unfortunate situations can help change our perspective, humble us or make us more grateful. You can volunteer at a shelter and serve food to those in need or donate your time to a local organization. My favorite is the Humane Society. Walking dogs and petting cats is therapeutic and the animals are so grateful. It gives you a sense of purpose. 
  • Get a Hobby
  • I’ll admit that life can get stagnant sometimes, even if everything is great. Shake things up and challenge yourself to do something new like yoga, painting, jogging, martial arts, baking, blogging, flying paper airplanes… anything! Hobbies are outlets and we all need to do something other than work, poop, shower, eat, repeat. Find your passion and spark in life. Save up for a road trip. Plan fun adventures. Even if it is by yourself. You don’t need a copilot. Sometimes it is great to just let your mind wander and enjoy the journey. Waiting to live and have fun until you find someone to do these things with is a sad excuse that is holding you back. Learn to love yourself and your company. Make new friends and be open to possibilities. 
  • Don’t Be Afraid To Get Help
  • There is absolutely nothing wrong with seeing a therapist. Honestly, everyone should see a therapist. We live in a time where we are trained to smile and be positive. We are human. We feel things! It is okay to feel. Sometimes our friends are not always the best person to vent to. A professional can help you find the tools to cope and manage stress. It is literally their job and they aren’t waiting for their turn to speak. The suicide prevention lifeline number is 1-800-273-8255. You never know what is around the corner, no matter how dark this chapter seems. Your next chapter could be the best times of your life. Giving up hope robs you of that and spreads your pain to those who love you. 
Health, mental health

What Are You Thankful For?

Throughout my life, I have struggled with depression. Actually, I am lying. I am underplaying it; I have struggled deeply my entire life with depression. I never felt like I was enough. I never felt worthy. I was born with serious health issues and minimal care due to negligent doctors and lack of insurance. I chose the wrong people to enter relationships with because I had no self worth so my standards were nonexistent. I sabotaged relationships as well because I felt like I was doing them a favor. I let friends take advantage of me because I was happy just to have friends. Twice, I had to get expired food out of a pantry and I mastered making meals out of what was left in the cupboard. I cursed the universe because life was not fair. I have bottled childhood trauma up and carried it with me throughout my life.

I am grateful that one day I decided to wake up and appreciate what was good in my life instead of numbing my pain and feeling like a failure. I cut out toxic people in my life and raised my standards on what I expected out of a relationship. I stopped letting negativity consume me and tried being positive for once. I took my health into my own hands and advocated for myself and educated myself. I stopped eating like shit and corrected imbalances and deficiencies and taking care of myself and my body. (Also, huge props to correcting my MTHFR mutation which really was a significant part of depression for me).

I am now in the most loving, abundant and stable relationship I have ever been in and my heart is full of love and happiness. I don’t feel worthless and I know I am a good mother and if anyone tries to change how I feel about myself, they will fail miserably. I am strong, determined and passionate. I am thankful that I never gave up. I almost did, many times. I am grateful that I pulled myself out of the dark and loved myself. I never would have known this beautiful life I have now. I don’t know who needed to read this but I felt a strong urge to share this. Never give up! You never know what is around the corner for you. You are worth the love you give everyone else and everything is going to be okay.