Kicking A.S. in the A.S.S.: Dani Ross-Wells!

Hello, friends!

Today, I am so excited, honored, thrilled, enthralled, and amazed at the blog post I bring to you…

Dani Ross-Wells is such an inspiration to me. We went through our yoga teacher training together and were actually cabin-mates at a Holy Yoga instructor retreat! Crazy world, because we both actually live in Oklahoma City, and attend the same church.

While at the yoga retreat, I got to know a little more of Dani’s story, and how her yoga practice and lifestyle affected her health and wellness. She’s such a wonderful human, mom, yogi, and warrior. I can’t wait for you to get to know her better.

Without further delay…here’s the lovely, fiery Dani Ross-Wells.


 

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Ankylosing Spondylitis…it sounds more like a dinosaur than a disease, doesn’t it? I would much rather it be a dinosaur.

I was diagnosed with Ankylosing Spondylitis and Rheumatoid Arthritis in my early thirties.

It had gone undiagnosed and misdiagnosed my entire life. I’d like to explain it to you in full detail, but for lack of time and the sake of boredom I’ll let you google it.  Previous to my diagnosis, I was a very successful hairstylist. I worked long and hard hours. My body hurt…A LOT! I chalked my pain up to my profession and vanity, because Lord knows I wouldn’t work in anything besides my tallest heels [insert shoe obsession here]. I remember, even in my childhood, always feeling a decent amount of pain in my body. The first time I really remember it was in elementary school. My mom passed it off as growing pains as most parents would. A few years later, in middle school, I was diagnosed (misdiagnosed) with asthma. My inhaler made it harder to breathe so I stopped using it after a while and learned to deal with a fire in my lungs anytime I was active…and I was a very active girl! Another few years down the road, in high school, I had passed out after walking home from school. No one was home and a neighbor found me and called my mom. A trip to the emergency room led to yet another diagnosis (another misdiagnosis) of Mitral Valve Prolapse. A heart condition that I had to take daily meds for, and, once again, never seemed to help.

Then, in 2005, I had a breast augmentation.

That was the year my health took a huge nose dive.

My back would “go out” for lack of a better term. The cause was unknown and would happen without notice. The pain was excruciating and would start in my lower back, then travel to my hips, which would eventually stop working, and down my leg. The doctors told me it was sciatica and sent me home with muscle relaxers, which again, never touched my pain. My cane became my lifeline from time to time. Some days were great with minimal pain and some days I couldn’t move. This continued for the next 10+ years…and it only got worse.

Over the next 10 years I battled this pain that the doctors had no answer for.

My hips and legs were failing to do their job. I would literally just be walking with my cane and then BAM!!! My leg would stop working all together and slam me to the ground. It happened at home, at work, in public…it didn’t care where I was or who was around.  My pain hated me, or maybe it was laughing at me, and I hated it back.

With each of my two pregnancies my body seemed to deteriorate. I was almost never without my cane by this point. I have had some very low and dark moments with A.S. but my lowest was when I was walking down the hall (we had tile floor) and I had my newborn baby Molly girl in my arms, and it happened. My hip gave way and I fell. I couldn’t brace myself because I was holding and protecting my Molly with everything a scared mother could….and I was home alone.  I army crawled, somehow with her in my arms, to her room and just laid there.  I called my mom. She came to the rescue. This happened one more time with Molly in my arms, but this time at my mom’s house, and I couldn’t reach anyone on the phone.  There was not one person that I could get ahold of that could come help me. My friend sent her husband to help me. I was lying on the living room floor with Molly in my arms. I was humiliated.

You would think that a doctor would figure this all out by now, right??? Nope!

Most A.S. sufferers go undiagnosed or misdiagnosed for at least 10 years, and typically in their thirties or later.

A.S. can cause flare ups in many parts of the body. My eyes were aggravated by a chemical in my salon which caused the flare up beast to rear its ugly head. An eye flare up that’s called Uveitis. It is an excruciating type of pain that I don’t wish upon my worst enemy.

Again, I had to call my mom for help one night while I was at work. The pain was so bad, I couldn’t finish up my client or drive home. She took me to urgent care to end up with another…yep, you guessed it…misdiagnosis. I was told it was pink eye. Hell to the no it was not! I was back in the doctor’s office a few days later, unable to stand any kind of light, and the entire white of my eyes was pure purple and still in immense pain. They had no idea what it was, and sent me to the hospital. From there they had to send me to an emergency eye specialist. She was a prayer answered. She finally knew what was wrong, gave me the correct diagnosis and I had to go back to her every couple weeks for tests and to make sure my eye pressure wasn’t through the roof. I was put on steroids and my eyes had to be dilated every couple hours, making it impossible to see. I had developed cataracts from the swelling and I eventually had shots put into my eyeballs as treatment. I went through this for months.

One day while I was in her office she finally asked about my cane. I explained to her that no one knows what’s wrong, and briefly explained to her my situation. Once again, she was another prayer answered. She put my eye flare up and pain symptoms together and sent me for blood testing.

The results came back exactly how she expected. I was HLA-B27 positive and RH factor positive. Finally, these test results lead me to answers for my years of pain.

Hallelujah!

It took one more really bad flare up to grasp the severity of my diagnosis and to seek treatment. This time I was home with Morgan, Molly and Jack. The few previous nights my pain was so bad that I couldn’t get into my bed, so I had been sleeping on the floor next to it. After a couple nights of this, I woke up unable to get up at all. My back felt as if it were going to snap in half if I moved or if anyone were to touch me. My poor Molly girl was about 2 years old, and she stood there staring as her Mommy screamed and wailed. In that moment, I truly thought I would die from that pain. Morgan finally counted to three…he picked me up, and I didn’t die, but I sure as hell wanted to. I was taken to the hospital and referred to a Rheumatologist.

When my pain gets this bad, which it still occasionally does, it doesn’t seem possible to live through.

Even breathing hurts. With every inhale and exhale, I feel my spine stretching and I feel as though it could snap. Getting dressed is near impossible without help, walking anywhere around the house can take forever, and using the restroom is damn near terrifying for the fact that I either have to have help on and off the toilet, or sometimes I just wing it and try to pee standing. See?!?! I warned you about oversharing!!! Here I am, in all of my transparent glory. It is the nitty gritty of A.S. It’s the dark, ashamed space that I occasionally get stuck in. If pain alone could kill, it would be this.

A.S. was just of coming out of the woodworks and was considered rare at the time.

They wanted to put me on biologics, which are essentially a low dose of chemo injected into my body daily, weekly, or on a half a day infusion. I had an MRI done, which showed my lower spine and my neck were just about bone on bone, and a slipped disk that couldn’t go back into place because of the amount of inflammation in my body.  With A.S, once the bones touch, it causes them to fuse causing very limited mobility.  I was also told that I had about 2-4 years before I would need a double hip replacement. They recommended that I come back in for an epidural for pain.

I went home and read through all the pamphlets I had collected about A.S. and R.A. and the medications that they were recommending for me. I knew without a doubt that I did not want those drugs in my body. The side effects were terrifying, and, more often than not, left you with more sicknesses which required more meds. No thank you, and a big, fat, Bye Felecia!!! I joined several online support groups for people with A.S., and they were all on so many medications. Most were very angry, because living with this amount of pain can put you in that place quickly, and they were still so sick!

Medication was definitely not the route for me. There had to be another option.

I researched and researched alternative medicine, natural remedies, and every diet under the sun that promised to help relieve my symptoms and stay medicine-free for as long as possible. Many people told me I was crazy…to me that was nothing new. So I kept on truckin with my hoodoo voodoo tactics that, in most minds, made me a crazy hippie. I went back to see three amazing people that helped heal my body of cervical cancer when Molly was a baby. They are three more angels that I have crossed in this journey. I went once a week for a couple months for pranic healing, biofeedback and counseling (because we all know that the bad and negative energy from past feelings and events can make us sick, right??) When I left their office, I was always given a list of foods to avoid for the next 48 hours. Hmmm….maybe there IS some link between my symptoms and diet that I can control!!!

I had been a vegetarian and vegan in my past, so I figured I’d be able to handle some of the strict recommended diets that I had looked into for reducing inflammation.  The first one was a starch and sugar free diet. It was next to impossible when you start looking at how many things contain starch and sugar. They also recommended carrying iodine with me to test my food.  This was a huge fail in my book. I gave it a shot, and ended up in a huge flare up.

My body did not react well to the first diet. Next!!!

I tried many diets over the years, and wasn’t finding any one that worked. I was depressed, my anxiety sky rocketed, and I had a case of fatigue that made it next to impossible to function at work. I finally came across the Paleo Diet.

Eating this way is what finally gave me a glimpse of hope, that I could possibly be successful in controlling my symptoms on my own.

I was constantly following people on social media that controlled their disease symptoms through diet. I finally felt home with a group of people that were so positive about their health and wellness, as well as living with crippling A.S.. THIS was my tribe!!! I soon learned about a diet called AIP (autoimmune paleo). It was a version of paleo with more restrictions that help regulate autoimmune dysfunctions. It was a hard adjustment, and I went through a bit of hell with this diet, but after the awful first couple weeks, my body did adjust, and I found another level of feeling better that I hadn’t seen in years. I mainly still stay on AIP or something similar to it. After so many years, I know exactly how my body will react to what I put into it. So those cheat foods….reeeallllly had to be worth it.

I was told to stay as active as possible.

Active????!!!!! You have got to be freaking kidding me!!! My body felt better, but more on the level of “I can walk right now, but please don’t touch me.” I hired a trainer to come to my home 3 days a week so I didn’t have to be humiliated in front of the gym crowd. The body I had was not the one I was used to having. Constant pain, depression, anxiety, stress, two babies, a salon owner, and a wife. I was ashamed not only by my appearance (because I never thought I’d be the person to “let myself go”), but also having to roll into the gym with a cane and yelling out in pain if I dare bend or twist the wrong way. I slowly got stronger, with a very patient trainer at my side, and we eventually moved workouts to the gym. Strength training made another big difference, but building up my muscles to support my fragile skeleton was so hard. I am a “has to do it best” kind of person, so there were many days that I would overdue it at the gym, which would, in turn, send my body into a flare up. I had to learn balance in my workouts; to push myself enough, but not too far. I had wanted to become a bikini competitor for years and trained for a show in my twenties. The more strict my diet became, and the more rigorous my workouts, my body would remind me just how fragile it was by flaring up in some agonizing way. I always felt like I failed, but what I try to believe is that the Man Upstairs was telling me to slow down. This had happened every time I’d get dead set on crossing that item off my bucket list.

Yoga has been my one constant.

I started taking yoga classes in my early twenties with a friend that was a hardcore yogi. I went knowing nothing. I came out craving to get into my next class. When my A.S. started making public yoga classes difficult, I scooped up every yoga DVD I could get my hands on and started practicing at home. There was no competition or having to be better than the person next to me. It was just me in all of my modified pose glory.

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We sold my salon, and moved from Southern California to Oklahoma. In a new environment, I knew it was time for me to slow down and get my health under control. The cold weather in Oklahoma really kicked my flare ups into high gear. I didn’t work for our entire first year here. I got to be a stay at home mama, and although it was hard to step down from my own income and the title of salon owner and hair stylist, which I was so proud of, I knew it was the right thing for my body. During this year at home I focused on my diet and any other alternative remedies I could think of. I bought all the essential oils a crunchy stay-at-home could ever want, and started making all my own cleaning products. I began growing a pretty large vegetable garden. I enjoyed being homeroom mom to Molly’s classroom, and I had lots of one on one time with Jack. I overhauled the chemical laden household products and all of my beauty products with natural versions. I also quit my injections of Botox and fillers…because…chemicals!

I wanted to take everything I possibly could control in my environment and make it as natural as possible.

Doing this also helped control more of my pain and flare ups, and I loved the feeling I had of being in control of the grasp that A.S. had on me for too many years. The reality of sitting on the sidelines of my life while my family had the fun was quickly diminishing.

There was one last thing that I hadn’t addressed in my quest for a radical health makeover.

My breast implants. It had been 11 years since I had them put in back in 2005. To be honest, removing them never even crossed my mind. Or maybe the fear of removing them was so deep that I subconsciously ignored it as an option. I was actually in the process of looking into replacing them with new ones when one of my very best friends sent me an article about a woman that had removed hers for health reasons. She sent this article to me followed with, “Please don’t be mad at me for sending this. But the Lord has put it on my heart to send it to you, and I don’t know why.” I rolled my eyes a bit and didn’t read it right away. I didn’t want to read it. Because once you know something you can’t UN-know it. I eventually read it and sobbed. I knew after reading it that this was an intervention from God. I knew without a doubt in my mind that I had to do it. I had to take them out for health reasons. I made several consultations and became a part of several groups on breast implant illness. I’m an all or nothing kind of girl, so I had my surgery for implant removal and a full capsulectomy scheduled within two weeks. You know that feeling you get when you don’t want to do the right thing because it terrifying, but you know that you couldn’t live with yourself if you chose the easier option??? Ya, that was this, on every level.

My insecurities of being flat-chested were flooding my head, and it didn’t help that my surgeon was completely against me going through with it.

My surgeon warned me over and over of the damage that would be left behind. Eleven years of my skin being stretched by implants and again by two pregnancies. I had gone from an A/B cup to a D cup with my implants, and after I had babies I struggled to get those bad girls shoved into a DDD. My implants were placed between my chest muscles. I was told that my chest muscle would never be the same. That my muscle had been wasted away, and could possibly never be built back up with hard work in the gym. I was told that I would have a scooped/concaved appearance on my chest and that the little bit of breast tissue I had left would be settled at the bottom on my breast.

I cried…a lot.

Every insecurity I had was brought to the surface.

I felt shallow for caring so much about my appearance when I knew that this could potentially take my health to yet another level of healing.

I had a few major melt downs leading up to my surgery, but I stayed strong, knowing that I was lead down this path by God, and I couldn’t deny that on any level.

I had my surgery, and it was a rough recovery. The one thing I did know was that I was damn proud of myself. That doesn’t happen much as a mom, right?!?! As a mom I am perpetually stuck in a world of “not good enough.” But, I was. I was proud of myself in a way I had never been. I still had a few good rough melt downs after surgery, and had to be reminded that I had at least a full year, if not more, of healing. The melt down in the Victoria’s Secret dressing room had to have been the worst. I had tossed out 11 years of bras and baiting suits and shirts that would no longer fit. I was starting over…back to bra shopping with my mom, just like when I was in 5th grade, and needed my first training bra. I was embarrassed and felt so vulnerable. I undid my binding wrap and went through a million padded and push-up bras (because I was convinced I was going to leave with the bra that made me 3 cup sized bigger). I cried with my mom and I cried with the sweet V.S. employee that was helping me. I felt like I looked so damaged. I ended up settling for a bra with no padding and no added cup sizes…just a cute pre-teen looking bra.

I decided I needed to learn to love myself… scars, damage, sagging, flat chested and all.

My first time back to the gym after healing, I noticed an immediate difference. I could lift heavier and do more reps. I felt stronger! It was hard work and it hurt but I felt unstoppable! I couldn’t believe the difference so fast in my strength!!! I went to a yoga retreat 6 months after surgery. There in the beautiful mountains of Arizona, during my weeklong heaven on earth, I saw my yoga practice pushed to a new level that I had never achieved. The level I could get my practice to was so exciting, and I could finally hold a chaturanga for the first time in my life! I came to realize just how much my implants had been hindering me. I began to find a pride and gratitude that I had been missing my entire life.

It’s been just over a year since I had my implants removed. Do I ever regret it?? Absolutely not! Do I still struggle with insecurities??? Absolutely, I do. When I find myself caught in the unhealthy cycle of missing my big breasts, I remind myself of the darkest days of my flare-ups. I remind myself of only watching my kids play, and not being able to play with them. I remind myself of the medications that I desperately want to avoid and how strong I have become.

Health and wellness…it’s a broad spectrum.

It can mean many different things for different people and it’s definitely not a one size fits all. For me, though, it was holding steadfast to my big picture and not giving into anything that took away from that. It was learning to say screw you to the articles, people, and doctors that said I couldn’t or it wasn’t a good idea. It is learning to love myself in a new way, follow my gut, and celebrate what my body is capable of. Nutrition, alternative medicine, natural remedies, healing from the inside out, and stripping away anything that wasn’t conducive to my health and wellness lifestyle.

I am an A.S. warrior and I’ll continue down this path for as long as it takes.

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2 Comments

  1. Tracy Holt

    Dani you are an amazing woman. Reading this gave me so many emotions that I can’t describe. I am so blessed to call you my best friend and the support you give those around you is indescribable.

    Like

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