Health, Unveiling Invisible Illnesses

Invisible Illnesses Unveiled – Scoliosis

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

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

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

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

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

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

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

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

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

What is your biggest struggle?

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

What is your biggest accomplishment?

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

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

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

What are three things you can’t live without?

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

Favorite quote:

“Just Be Real”

What inspires you on a daily basis?

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

Photos by Misti Blu Day

Ra’chelle’s Photography: Majestic Soul Photography

Health, photography, Unveiling Invisible Illnesses

Astrid

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

It’s Okay to Feel

Yes, stay positive! BUT don’t stop having feelings. We have become such an image of perfection and only showcase the positive side of our story. This makes us feel like we can’t ever be raw or have feelings. It’s okay to be frustrated, cry or feel angry. Just don’t live there. It’s okay to feel! 💛👏🏻

Health, Unveiling Invisible Illnesses

Once a Day – Engage Challenge

Do we ever really stop and truly engage, looking into someone’s eyes and feel their existence? We are always too busy or thinking about what we want to say, and let our distractions consume our mind. Our world is disconnected, digital and diluted and we wonder why people feel so invisible and the war on mental health continues to bleed on. I challenge you to engage once a day, whether it is a stranger or your child, friend or spouse. Turn your mind on mute and look them in the eyes an listen.

“How is your day?”

photography, Salon Life

Mermaid Morning

I have always loved mermaids! I got Manic Panic from the Premiere Orlando hair show and decided to play. My model, Frazier was previously featured in my Invisible Illnesses Unveiled feature. Check out the photo shoot we did this morning.

Hair/Makeup/Photography: Misti Blu Day

YouTube Video

photography

Thirty AF! Thirty Is The New Black – Photo Shoot 🖤🥂

I remember the scare of my thirties haunting me by the age of 25. When 30 finally approached, I already accepted it the years before while whining about being old. I am now 33 and I would not change it if I could. The 20 something me was lost, confused, not good enough, insecure, a doormat, dramatic, stressed and flailing about in life. The 30s were so different. I grew a backbone, developed self worth and confidence, put my damn foot down, figured out what I wanted and what I DON’T want, got my shit together and found balance. 30s are awesome!

Check out my business partner, Theresa Lanno at Bombshells Glam Lounge! I photographed her on her 30th birthday. She is thirty AF and thriving!

*Photos by Misti Blu Day