‘This will not define me.’ I went through my kitchen, boxed up everything that contained gluten, and set it in the guest bedroom.’: MS warrior shares journey to diagnosis and wellness

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“My Multiple Sclerosis diagnosis came as surprise, but looking back through the years, all the signs and symptoms have been present since I was in high school. In high school, I developed some very weird knots on my lower legs, around the ankles, and along the lower shin bone. Physicians had no answers, although they were painful from time to time. Nothing to lance, hard tissue, and very uncomfortable. They also often appeared bruised. We all attributed this to me bumping my legs on the bed rails of the resident beds of the local nursing home where I worked for several years. They would come and go and seemed to be less painful, though not less invisible, into my twenties.

In my senior year of high school, I noted one morning, as I was putting contacts in, the vision in my left eye was very cloudy, but nothing alarmed me. I had an upcoming eye appointment and thought I just needed a stronger prescription. Well, in January when I went to the optometrist, he was alarmed when he was looking into my eye. He felt I had a partial retinal tear and said I needed to see an ophthalmologist the very next day.

In rural Kansas, nothing is close. So the very next day, I was off to see a specialist. It was there we learned I had a very rare and treatable eye disease. This led to multiple eye drops, oral steroids, and eight surgeries over the next 10 years. At one point after seeing another specialist in Nebraska while in college, I also had an appointment with a retina specialist from the Mayo Clinic. He shared that since I grew up on a farm and had ringworm, the infection had not left my body. It had been treated, topically, but was still circulating in my body and the inflammation was left behind. This settled in my legs (the knots) and in my eye as inflammation. There wasn’t much that could be done, other than to maintain the pressure and keep it from escalating by using drops and steroids.

Following college, I relocated to Texas. During my move to Texas, I started experiencing stomach pains, sudden gastric distress, and frequent bowel movements that ‘weren’t normal.’ I chalked it up to a cross country move, landing a new job, and driving from Colorado to Texas by myself: it was all exciting and scary at the same time.

A woman with MS wearing sunglasses and a hat
Courtesy of Marla Smith

I spent eight years in Texas. My allergies were bad due to the molds and pollens, and the gastric distress became worse. I never knew what was going to happen after eating a meal. I learned how to casually stay behind or linger so I could quickly make it to the restroom. Road trips were filled with what-ifs, as I often traveled with wipes and always extra clothes in my car. After sharing my concerns with several physicians, I found someone who took a more holistic approach and really landed on irritable bowel syndrome (IBS). I was then given many supplements to take, often costing between $200 to $400 a month, as insurance didn’t cover the cost.

I moved to Colorado, and a few months after arriving, I walked into a natural grocery store where I could hear a lady talking about all of her bowel and stomach issues. I realized everything she was talking about was my story. The GI distress, the no warning and urgency to use the bathroom, the allergies, the vision challenges, the yeast infections, the chronic fatigue…the list went on. She had some information available for pick up, and I selected a few handouts to take home and read. The day after reading, I went through my kitchen, boxed up everything that contained gluten, and set it in the guest bedroom. My follow-up appointment with the local health practitioner was three weeks away. It was simply a three-month follow-up, and it would include some labs and replenish some supplements.

Courtesy of Marla Smith

I went to my appointment and told him about the presenter and what I had done. I felt I had celiac or at minimum a gluten sensitivity. Considering it was 2007, he didn’t really know much about gluten sensitivity but agreed to run an antibodies test and some basic blood work to determine if it was a factor. A week later, I learned I had celiac. I had already been feeling so much better since I stopped eating gluten at home and started really trying to cut back from it while I was out and about. The scary part about the diagnosis was food labels were not labeled then as they are today. So it was knowing and understanding gluten was the form of wheat, barley, and rye, and how hidden it was in so many foods.

I continued to navigate life, the sudden restroom stops or lingering at restaurants following meals had become less frequent. The brain fog was suddenly gone, and the energy I had been missing for years returned. I was enjoying life again and finding ways to enjoy the foods I always loved in a new way, gluten-free.

In 1978, my dad was seeing triple, and the doctors told him he had some early signs of MS. Those vision issues went away until the spring of 2002 when he awoke with some leg numbness. Shortly after, he was diagnosed with MS, and for the next 17 years, he slowly declined, to the point that he enjoyed his days from the recliner. His mind was great, but he missed socializing and really connecting with people. He was a farmer all his life and missed the daily shop talk with the people of the town. He ambulated as much as he could and often would ride his scooter around town. He even enjoyed riding around on his scooter when visiting his grandsons’ games as the years went by. But the rounds of medication, the bouts of stiffness, the neuropathy, and the loss of bowel and bladder control at times were exhausting. Not only to him but to my mom as a caregiver. He felt helpless. He lost his identity.

Courtesy of Marla Smith

In early December 2018, as a family of three, we moved from Denver, Colorado to Tucson, Arizona, where we currently reside. Our move was a little stressful, but we resided in a hotel for some twenty days before we were finally able to sleep in our new home! On the morning of December 22, I awoke and noted both eyes were experiencing some cloudy vision. Cloudy as if there was a film over my eyes and I couldn’t wipe it off. As the day progressed, so did my diminishing vision. I knew this wasn’t normal and certainly not the same type of vision challenges I had previously battled with Pars Planitis for the previous 27 years. So here I was in a new city, a new state, with no doctors. Having a 25-year history with ophthalmologists, I quickly called my physician on Christmas Eve and only was able to connect with the answering service. On December 26th, I found an ophthalmologist who was able to see me right away.

When I couldn’t see colors and I couldn’t make out certain shapes, the ophthalmologist started asking lots of questions. He was amused by my knowledge of my eye, my history of eye surgeries, all the steroids I once took, and the number of retina specialists I had seen through the years. He was baffled by my history: not one time did someone indicate this was MS, nor send me for an MRI.

A woman holds both sides of her head and makes a surprised face
Courtesy of Marla Smith

Within the next 20 days, the vision was manageable, not perfect but tolerable. Within the next 20 days, I would hear those words, ‘You have MS.’ I immediately said, ‘This will not define me.’ It will redefine me. It’s taken me a while to find my voice. But I’ve known all along I didn’t want to go down the path of medications. I wanted to find a better way. I met with a research scientist and learned of my options for medications, it just so happened she was a family friend and willing to sit down and have a conversation with my husband and I found what medications would be best. I chose Tecfidera and stayed on the medication until the financial assistance program was stopped. I then switched to Vumerity. Side effects forced me to make a change. From the moment of my diagnosis, I dove in and started researching. I found so many resources from the Vitamin D Protocol, Wahls Protocol, being a Wellness Champion, and drinking celery juice, but the ultimate focus always came back to clean eating.

Courtesy of Marla Smith

I was already gluten-free, so it was an easy adjustment to fall into line and began eating more of a paleo, vegan, keto lifestyle incorporating more greens, a variety of vegetables, and eliminating anything processed.

It hasn’t been easy, but I’ve felt amazing and made the ultimate decision to go off of medication altogether and manage my life through minimizing stress, moving daily, and focusing on my wellbeing overall. I recently realized that many of the support groups on social media are heavy. I’ve created a new community within Facebook, The MS Life-Wellness Monarchs. My vision is this community will be filled with manifestation tips, wellness ideas, exercise videos, recipes, etc. Anything that will help those who suffer with MS or any autoimmune disease redefine their lifestyles and become better people than they were yesterday! It’s all about becoming the butterfly you are meant to be through a Wellness Metamorphosis.”

Courtesy of Marla Smith

This story was submitted to Love What Matters by Marla Smith of Tucson, Arizona. You can follow her journey on Facebook.  Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

Read more inspiring stories from autoimmune disease warriors:

‘I stood in my kitchen in stunned silence. My boyfriend mopped up the blood.’: Woman diagnosed with rare autoimmune disease

‘You don’t feel good again, Mom?’ How do you explain to children what an autoimmune condition is?’: Mom with 2 autoimmune diseases shares how she took her life back

‘I woke up one day with a burning sensation in my arm. ‘You brought this on yourself with stress.’ I wasn’t convinced.’: Woman with Multiple Sclerosis urges ‘keep pushing for answers’

‘I tipped over, slamming my head. ‘I can’t see anything!’ The doctor said, ‘Your life will be less fulfilling now.’: Multiple Sclerosis warrior recounts journey, support from husband

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