Dealing with Multiple Sclerosis Like an Alpha Female: Interview with Robyn Baldwin

Dealing with #multiplesclerosis interview with Robyn Baldwin on alisonsmith.com

I first met, Robyn, at a private, round-table event, at the CanFitPro Conference, here in Toronto this past summer. The meeting revolved around what it was like to run an online wellness business & blog. I was one of the speakers, so I took a few minutes to explain to everyone that my blog & business was born out of my experience battling to get my health back from Lyme Disease. Little did I know that there was someone in that room that knew exactly what it’s like to be a wellness warrior, and I’m so grateful that I got to meet her.

I arrived home from that event energetically pumped from meeting fellow online entrepreneurs who are right in my own city. Since, I run my business from home, I don’t get to meet very many people, live, in-person, in the flesh; I usually meet people via Skype of G+ Hangouts. Being with people, in the same room, who are on a similar path as you is spine tingling, and for the rest of the night I was on a high.

When I swooped back to my place, after the conference, I got an email from Robyn. She said that she, too, had a chronic illness — multiple sclerosis — and she wanted to chat about our common experiences dealing with a chronic illness. Speaking to her was so wonderful; sometimes I don’t realize how isolated I am at alisonsmith.com headquarters. Talking to a woman, like Robyn, who is approaching her chronic illness like an Alpha Female just fuels my fire to keep on fighting, myself.

I love being surrounded by strong, creative, independent, and entrepreneurial women. The collective energy is catchy! There’s a saying: ‘You are the average of the 5 people who are closest to you.’ Translation: if you hang out with unmotivated, negative, uncreative people, your aptitude level will hover around the same caliber. I want my life and recovery to be out-of-the-box and as unordinary as possible. So, connecting with women like Robyn helps me to expand my creativity and pursuit of happiness and health.

Robyn’s story

Robyn’s story is directly connected to our autoimmune awareness theme this month, because MS is considered an autoimmune disease. If you haven’t had a chance to read my kick-off post for autoimmune awareness month on 12 Ways to Help Treat an Autoimmune Disease, please click here.

Multiple Sclerosis (MS) is a disease process that erodes the outer coating of white matter nerve cells; this outer coating is called myelin. Myelin is a white, fatty substance that helps electric impulses to travel faster down a nerve cell. Not all nerve cells have an outer coating, but nerves involved in triggering muscle movement and organ function certainly do. If a grizzly bear were staring you down, would you want to move like a snail or jaguar? Thanks to myelin, you might be able to move faster. (Are we supposed to run from grizzlies or play dead? Hmmmm…please leave a comment.)

The exact cause of MS is unknown, but here is what happens, in a nut shell: white blood cells (WBC) of the immune system, target the myelin coating around nerve cells. As the WBCs attack the myelin sheath, that causes an inflammatory reaction that ultimately strips the myelin off of the nerve cells. This process is call demyelination. As the nerve cells start to lose chunks of their myelin sheaths, the electrical nerve impulses that travel along those nerves becomes disrupted, and MS patients end up experiencing

  • fatigue
  • numbness & tingling
  • muscle spasms
  • muscle weakness
  • vision problems
  • dizziness
  • walking difficulty

To help us spark a conversation, here on the blog, about how to address autoimmune disorders through diet and lifestyle changes, I thought it would be fun to interview Robyn about her approach to treating MS, and all of the things that she practices to help support her body toward remission. {Robyn has a sweet gift for you…keep on reading.}

Dealing with Multiple Sclerosis Like an Alpha Female: Interview with Robyn Baldwin

Can you describe what you experienced when you first started to have symptoms?

I woke-up one day with numb, tingling fingers in my right hand. I thought I had slept funny on my arm and they were simply asleep. I packed my gym & food bag, and headed off to the gym. I went through a back workout, stretch, foam rolled and acu-balled my scapula & trap muscles thinking I maybe had a pinched nerve somewhere in my neck. Throughout the day my upper torso, including my pectorals & boob (that was weird let me tell you), went numb and then my abs & back (all on my right side) also started turning numb. Throughout the next few days, my entire right leg and foot also went numb and started tingling.

How long did it take for you to get diagnosed, and what did it feel like to receive that news?

A week after I started experiencing symptoms my right leg and foot went numb, which really worried me, so I drove myself to the hospital. After 1 CAT scan and 2 MRIs I was diagnosed within 48-hours with MS. I had to be my biggest advocate during this time. After the CAT scan, which didn’t show anything, the ER doctor wanted to send me home. I said, “no that’s not acceptable, what is our next test to figure this out?” He said, “I guess we could schedule you for an MRI but it might take a while”. Not a problem, I will sit here until we figure this out. I was walked to the MRI area 5-hours after I arrived at the ER. I had to wait another 4-hours after the test for a doctor to see me. They sat me down in a curtained-off area of the ER, and an internist (doctor of internal medicine) walked in and said, “there is an abnormality on the MRI.” My world stopped for a split second. He started to turn around, and was pointing to the back of his neck. I stopped him and said, “wait, did you say abnormality?” The next words out of his mouth were, “there is a demyelination on the c-spine, which is indicative of MS but not conclusive.” My next words were strong and harsh. “It’s indicative but not conclusive? So why would you say that to me? Why would you put that worry in my head if it’s not a firm diagnosis? What are our next steps?” I was kept in the ER overnight as they needed to repeat the MRI in the morning with a tracing agent in my bloodstream. I lay on a gurney under bright lights by the nurses station; tears streaming down my face trying to come to terms with my impending diagnosis. By the time I had the second MRI in the morning, and met with the neurologist, I was ready to accept my diagnosis. When he told me I had MS based on MacDonald criteria I just started asking questions about what was next. I didn’t break down and cry until I saw my mother who had driven in from Ottawa. But how did it feel? It felt crappy but not unmanageable. It was just the next storm I would deal with in my life.

To read Robyn’s full diagnosis blog post click here.

So, I know that you are a highly active, adventurous, and proactive Alpha Female (we’ll get into what an AF is, later on), who goes out of her way to really care for her body, but was it always that way? What was your lifestyle, diet, and outlook on health before MS?

I started my fitness journey in 2009. I learned how to eat clean and workout and started competing in fitness competitions. I had always been fairly fit as a dancer and swimmer in my younger years, but I never really ate well. As I learned more about nutrition and fitness, my fitness journey became more of a health optimization journey. I started working with a naturopath to figure out everything from digestion issues, to reducing stress, to optimizing vitamin & mineral levels. My outlook on lifestyle before MS (and now after) was already how can I always optimize my health, learn how to balance work & life, and always feel great.

After diagnosis, what were your treatment options? And, what course of treatment did you end up choosing?

After my diagnosis I was put on a steroid treatment. I had one IV treatment at the hospital and then was sent home and received the other two treatments at home. I started researching my treatment options even before I saw my neurologist again. I looked into all the disease modifying treatments so I could be prepared with questions at our first follow up appointment. There were 3 kinds of treatments: IV treatments, self injections, and oral pills. I also saw a second neurologist at the St. Mike’s clinic for MS to get a second opinion on everything. Based on my lifestyle, I had two neurologists suggest I go on Aubagio or Tecfidera (both oral options). I researched all of them, looked into side effects, efficacy and chose to not go on any. While I was researching conventional treatments, I also looked into how I could manage MS through nutrition & supplements. I decided I didn’t want to risk a decreased quality of life based on the possible side effects of the drugs for minimal efficacy, and wanted to see if I could manage MS without drugs. I chose to treat myself holistically through optimizing my nutrition, supplements, reducing stress, and always getting proper sleep.

What sorts of medical and holistic practitioners did you see, and what did they recommend treatment-wise?

After my diagnosis I went to see my naturopath, I consulted with a registered holistic nutritionist about my current meal plans. I see an acupuncturist for stress and digestion issues, and a chiropractor for my athletic needs. I have also visited Soul 7 to use their healing therapies. What’s great about this health journey is I am my educator and advocate. My decisions are based on what I learn and what makes sense and feels right for me, but based on consulting with many different health care providers. I have a team treating me. With the naturopath we reviewed my blood results that were taken during diagnosis. The biggest surprise was that I was vitamin D deficient. I now high dose vitamin D at 8,000 IUs a day. We optimized my supplement action plan immediately. I switched practitioners in April, showed them all my blood work over the past few months, and we optimized my plan further. We took blood work in July to ensure I was on track and everything has been working wonders.

My basic supplement list is as follows:

  • 5am: Lemon Water & L-Glutamine, Fibre Smart & L-Glutamine
  • 8am: After workout, Protein Shake & L-Glutamine
  • 11am: Vitamin B Complex, NAC, CoQ10, Vitamin D and Magnum Primer
  • Mid Day: Emergen-C or Ener-C
  • 9pm: Magnesium, Calcium, Acetyl L-Carnitine, Vitamin D and G-Spring

How have you modified your diet? And, how has it helped?

I researched the Wahls Protocol by Dr. Terry Wahls and the Auto-Immune Solution by Dr. Amy Myers. I chose to follow the first level of the Wahls Protocol to see how that would work for me. It’s been working wonders but I still have leaky gut symptoms so I’m now working through the Auto-Immune Paleo Approach by continuing an elimination diet before I re-introduce anything and seeing an acupuncturist weekly. I am dairy, gluten, nightshade vegetable free. I reduced my nut, seed and quinoa intake and increased my consumption of green vegetables and organic hormone-free meat. I had to reduce my red meat intake and increase my fish intake. I still eat a lot of game meat but I make sure to get enough chicken & turkey in the mix and eat minimal eggs.

What sorts of physical activity do you do?

I train for obstacle course races. I’m usually at the gym 3 mornings a week doing a standard leg, back or shoulder workout. I’m then at my obstacle race training facility 2-3x a week doing conditioning or functional fitness circuit workouts. I try to do 30-minutes of cardio on a bike during the mornings that I’m scheduled to train in the evenings. I try and run 2-3 times a week but I’ve been dealing with an ankle injury this year. I’m also a yogi, so I try and go once a week to spend time on my mat.

How does diet and physical fitness impact your life with MS?

I believe my diet & fitness regime has allowed me to live a full life with MS. I am blessed with minimal symptoms, and really am truly living my best and healthiest life at this point in my journey.

In terms of MS treatment, what are you ultimately trying to accomplish through diet, fitness, supplements, and lifestyle?

To not let my body attack itself again. To live major symptom free for the rest of my life.

What’s been the best strategy, so far, to help with your symptoms?

Reducing stress and sleeping 8-hours is instrumental to me, even dealing with minor symptoms like tingling and numbness in my hands and feet. When I’m stressed, the tingling comes on faster.

I know from experience that people can be super opinionated about medical treatment; do you feel like you’ve received support for your treatment choices?

I have received amazing support from my family and friends. They are what truly matters, as I want them to respect and believe in my treatment. My father lives with MS as well, so it’s great to see him implement parts of my holistic treatment plan into his life. The only time I have experience opinionated negative comments is when I found a forum online of “internet trolls” discussing my choice in treatment in a horrible way.

How do you combat the nay-sayers? Do you have any practices to keep your spirit strong?

After reading the initial posts (left by internet trolls) I have chosen to ignore them, and not read the negative words. I have an obligation to myself to be true to my choices that are working wonders in my life. I create a safe environment for me to grow and thrive. I hope that one day something I post on my blog or social media inspires someone else to take a proactive holistic action plan in their life and that is the only reason I share publicly my journey.

Do you have any strategies that you use to remain positive, and to take action, on a daily basis?

I have a gratitude journal that I write in. This keeps everything in perspective. I am truly blessed in my life, and an MS sidekick is just a blip on the radar of life.

Was the inception of your website, robynbaldwin.com, inspired by your experience with MS?

No, I’ve been blogging since 2009. However, it was easy to start blogging about my MS journey on this platform, as I’ve been using the blog for a while to share bits and pieces of my life. I couldn’t find any information on how to navigate living with MS in the beginning, so I’m hoping my journey of how I went about everything can help someone else newly diagnosed or someone who has been living with it for a while and wants to take action.

On your website, you focus in on living as an Alpha Female; can you describe what an Alpha Female is?

In 2012, I wrote a short eBook called “Live Life Like An Alpha Female”. I wanted to properly define what being an Alpha Female meant, as it can be construed as such a negative term.

An Alpha Female is a powerful and assertive woman. Her confidence is due to being an intelligent and intellectual problem-solver. Being an Alpha Female is a State of Mind based on choosing ambition and being proud of it.

Type A Alpha Females often come across as strong willed and selfish. A true Alpha Female puts the needs of her friends, family, and coworkers first, without sacrificing her principles or dignity. An Alpha Female strives for synergy with the world around her. She wants a perfect work/life balance and believes in nurturing the relationships with the people in her life.

Can you describe how striving to be an Alpha Female has helped you keep your eye-on-the-prize of staying healthy, despite a chronic illness?

Being an Alpha Female means I decided to go through the 4-stages of grief as fast as possible so that I could move to acceptance and learn to live with MS as my new sidekick. It may not have been the best way, but it was my way of dealing. I didn’t ignore my feelings, but I chose to not stay in grief for very long. I reminded myself that my diagnosis could have been worse, and knew this was something that I could manage and live with. I just wanted to start learning how I was going to live with this auto-immune disease as fast as possible. I knew I had the power to educate myself and manage this disease because I was confident that I could.

Click Here to get Robyn’s eBook “Live Like An Alpha Female”

How can other women start to become an Alpha Female, themselves?

They can systematically learn how to take care of their health; once I became healthy, I had the energy to take on my career. As I optimize my health and feel better, my ambition and career grow. As my career grows, I can make time for my friends and my family, and give them my focus to help them optimize their health through things I’ve learned.

I recommend one thing a week to avoid overwhelm. Learn about water intake and then implement. Learn about the right nutrition for your chronic illness and then implement. We are our own science experiments. Then learn about supplements, reducing stress, reducing toxic load and how to get the appropriate amount of sleep. It seems like a lot, but just work through your health like you would a daily to do list and it reduces the overwhelm.

When you meet other women who also have MS or a chronic illness, what do you say to them? What do you believe they need to know?

One of my social media acquaintances was diagnosed with MS a week before me. When I posted about my diagnosis she reached out to me. We met for coffee within the first month of our diagnoses to discuss all our research and fears. We were able to talk about frustrations that we didn’t want to burden our family and friends with. When I meet other women with chronic illness I search for strength in their eyes. I judge what to say based on how much strength I see. I believe we can be support systems for each other, but we need to first and foremost be our own champion. From there, we can use our empathy to discuss research and help process the overwhelm so that we can decide what priorities we need to focus on.

How can people find you online?

Robyn Baldwin interview about multiple sclerosis on alisonsmith.comRobyn Baldwin is an Alpha Female who strives for a happy & healthy work/life harmony. She is a former CFL cheerleader and fitness competitor who chose to pursue two careers. She is a Sr. Integrated Marketing Manager for Kobo and a Fitness Personality. She is a fitness/lifestyle blogger at RobynBaldwin.com, a published fitness model, a freelance magazine writer, an eBook author, a future best selling author, a brand ambassador for Mizuno Canada and 23 Degrees Roastery and a sponsored athlete by Magnum Nutraceuticals. With a passion for fitness, Robyn loves running, and has coached beginner runners at a specialty run store in Toronto. She holds her spin instructor & personal trainer certifications. She’s a yogi that has been practicing for over 10 years, and is now a competitive obstacle course racer tackling the world of OCRs (obstacle course races).

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