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.
“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
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
I have not been confident in my local emergency department to care for me, due to dozens of terrible experiences. Am I mad at them? No. Is it their fault? Not really. This ER is 2.3 miles from my home. I can be upset or I can do something to help myself and others. Thanks to Dysautonomia International, I have access to educational printouts for physicians. I have dropped off information to the ER director and plan to follow up with a call today since he was unavailable.
I want the entire staff to be aware of medical issues that present themselves as ANXIETY. Please rule out other possibilities! Dysautonomia does not show up in blood work and it is common in young women, who are constantly dismissed and labeled with anxiety. There are many causes for it. My underlying condition is Ehlers Danlos Syndrome. Many ERs only factor in ONE complaint and the other 10 issues get tossed aside, which could help solve the puzzle.
Times are changing. I am joining the medical field as soon as I can and I am fighting for a new way of healthcare. This is my ER and I refuse to be afraid to come here, if I am in a life or death situation, because of the lack of knowledge of invisible illnesses. Learn my name. Set aside your ego and let me teach you.
When your medical team thinks you are just stressed or maybe have a common ailment and never test you for anything out of the norm, it can be frustrating. You feel lost and alone and just want answers. Sometimes this process can last years!
Up to 12 million people are misdiagnosed each year (1 in 20) and medical errors are the THIRD leading cause of death in the US (CDC, 2006) and kill 150,000 people per year. It is also disheartening when friends and family start to question you and think that maybe it is in your head. I have been there!
I am lucky to have a beautiful support system and people who care about me and I have made leaps with my health care, though I still have much more to discover. Advocacy is so important. Though my hands are tied due to finances and lack of health insurance, I still do a ton of research regularly and do what is best for my health and wellbeing with nutrition, detoxing my body, supplements and cutting out emotional toxins. If you are suffering from anything, I got your back. I am on your side. I am always here. Don’t ever be afraid to reach out.
💩💩Let’s talk about poop. 💩💩
It’s a shitty conversation, but it’s super important. I want to dump this information on you so that you can heal your body and detox. Being constipated is literally a buildup of waste in your body. It can back up all the way up to your ribs and press on your organs, keeping toxins trapped inside your body.
I had a conversation today, with my friend Laila, about how important our digestive system is. We were discussing how no one ever wants to talk about this daily, natural event that occurs and we often dismiss the value of a healthy gut.
Banana Bag Oral Solution is a specially formulated solution for vitamin deficiencies and dehydration. It is a drink mix and can replace the costly IV from an emergency room visit. The term “Banana Bag” is from the medical field, referencing IV fluids. The drink does not taste like bananas. In fact, it has lemon-lime taste to it. I prefer it to sugary sports drinks that are loaded with dyes, preservatives and artificial flavors. It is also gluten-free.
Banana Bag has been a huge hit for those with Postural Orthostatic Tachycardia Syndrome and also other Dysautonomia patients. It is beneficial for athletes, hangovers, the chronically ill, people with gut issues causing malabsorption and keeping general health issues at bay that are caused by deficiencies and dehydration.
This reliable solution restores the body with electrolytes and vital nutrients. It has been a crucial staple in managing my health, especially living with the Florida heat.
No sweeteners | No preservatives | No dyes | No artificial ingredients | No artificial flavors | No GMOs | No gluten.
I remember when I was 16, telling a doctor that I stopped breathing in my sleep. “No. Not at your age. I don’t believe you.”
For the last 5 months, I fought for a sleep study. I was denied because of my age and weight. After making several calls, hours on the phone on different occasions, I finally got approved.
Two days after my test I was called and referred to a pulmonologist. In 4 hours and 13 minutes, I stopped breathing 27 times with an average duration of 49 seconds. The highest duration was 117 seconds!
My point is, don’t ever give up. Keep fighting and I believe you.
It’s a bittersweet sweet moment to get these results back. Part of my is relieved to finally get help, answers and care as well as prove that I wasn’t crazy and to not be dismissed anymore. The other part of me wishes they were right and that I was just a hypochondriac.
I always try to smooth my hair and conceal my tired eyes. I always dust on a peachy pink blush and a fun lip color, regardless of how I feel. This is the mask of an invisible illness warrior. Occasionally, there are days that I struggle to even lift a limb to put on my war paint. On those days when I bare a naked face and join society, I get told over and over and over again, “You look tired.”
When someone looks exhausted or drained, instead try asking if they need anything or offer help, a compliment or anything positive. I wear makeup to hide when my face goes pale while my blood pressure drops and my body starts going numb, ringing in my ears or the sound of my pulse takes over while my vision starts to sparkle or fade. I wear lipstick to hide the loss of color while I brace myself against the wall or casually sit down and continue to smile and listen to your day.
Every day is a struggle, whether it is big or small. On the really bad days, it is a lonely world and it feels like no one understand. When you try to reach out, no one listens because they think you are young and healthy and perfectly fine. It feels dismissive and disheartening, quiet and empty as you hope for tomorrow to be a better day.
May is apparently everything awareness month, so today I chose to share a little bit about Ehlers Danlos Syndrome. In the medical field, doctors are trained that when they hear hooves that it is always a horse and never a zebra. The zebras in the world are standing up and wanting answers. We have been dismissed all of our lives. It is so important to me to educate everyone I meet in the medical field so that they can keep an open mind and empathy for those who suffer without answers. 🦓
Photo by Nicole Borges Photography