Autoimmune Disease Thriving Mindset

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I was asked the other day to share what has been involved in developing my autoimmune disease thriving mindset. I’m not about just surviving this disease or getting by. I want to thrive as I live with an autoimmune disease.

If you’ve been hanging out with me for a while online you know I’m obsessed with definitions in my blog posts. So I always love looking at the root of a word. So when I think about mindset, I’ll share the attitudes I’ve created for myself after my MS diagnosis.

Attitude #1: Living with Multiple Sclerosis is not a death sentence

I refused and still refuse to look at the average life expectancy of someone living with MS. Because unfortunately, I will not become just another number. And by the way I take care of myself I am expecting to have a life expectancy greater than the average. I’m also focused on increasing my healthspan and not just my lifespan. I want to live a full life and be healthy during my last few years. I don’t want to live them out in an assisted living facility stuck in a bed. It’s why I’m taking steps to improve my metabolic health in addition to caring for a body that has a confused immune system.

Attitude #2: I GET to take care of myself differently than I did before

While many things may have contributed to me developing MS, I can now take care of myself differently than I did before. I don’t think I’ve ever actually shared the science behind the correleations to developing MS or the research that is now coming out around EBV and causation. But needless to say I believe it to be several factors:

Vitamin D Deficiency
Emotional Health & Being In Poor Relationships
Stress Management
EBV
Digestive Health
and More

That all being said some of these things relate directly to how I take care of myself or how I move through the world. So if I can identify correleation or a gut feeling around correleation then I can take steps to improve how I’m living my life now.

Those have included:

Healing Digestive Health Problems
Nourishing My Body With Nutrient Dense Foods
Taking Supplements Based on Deficiencies
Moving My Body In A Way That Supports My Nervous System
Managing My Stress Responses
Getting Quality & Quantity of Sleep
Reducing My Toxic Load

I also avoid language around taking better care of myself than before (because then that discounts my entire life). This is simply a case of when you know better, you can do better.

Attitude #3: I can’t do it all, but I can do something every day

While the list of things that I do for myself is really long if I tried to do everything every day. However, each day, I get to choose from the list and do a few things or even one thing a day to take care of myself. Some days I have a ton of energy and I am up to incorporating a bunch of self-care tools into my routine. And then some days, I’m exhausted and the best I can do for myself is an epsom salt bath and getting to bed early so I can sleep at least 8 hours.

Attitude #4: I can heal myself

The first time I walked into Soul7 in Toronto (which is unfortunately no longer open), I met Bob Berman, the owner. And something he said to me has stuck with me ever since. He told me that “You will be able to heal yourself”. And I believed/believe him.

Here is a quote from an article in the Toronto Guardian:

“Their belief is that every person has the ability to heal. Their mission is to help people heal naturally and faster by combining ancient healing wisdom with new technology.”

Attitude #5: An autoimmune disease is simply a health sidekick

I am not defined by a diagnosis. Multiple sclerosis is not who I am. It’s something I live with. And that is why I call my MS simply a health sidekick that is here to remind me every day that I get to take care of myself. That I get to do this for myself and that I get to lead a fulfilling, active life.

If you live with an autoimmune disease what other attitudes that allow you to thrive would you add to the list?

Building & ReBuilding a Health Care Team

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I talk about how MS is a blessing in my life since my diagnosis in December of 2014. I’ve even gone as far as saying I’m grateful for the autoimmune disease because it’s taught me how to take different care of myself now so that I can thrive. One of the biggest challenges I’ve faced is building and rebuilding a health care team.

When I was first diagnosed I remember tackling my health care like it was a new side hustle in my life. I’d get up early to research and read articles. I’d come home from work and dive my nose back into books before going to bed. Building my healthcare team at the time didn’t seem that daunting. It flowed with ease.

When I met the love of my life, Mike, in October 2015, we then started dating in January 2016. I quit my job in Toronto and moved to Ottawa at the end of March 2016. I had to start fresh in my hometown city. I had to rebuild my health care team and I didn’t have the slightest idea how hard it would be.

So I’m happy to say I’ve experienced ease where it just flowed and I’ve experienced frustration and tears so from both perspectives I can write this blog post. Whether you have an autoimmune disease or you care about your proactive health and the team that you surround yourself with this post will hopefully serve you.

Toronto Health Care Team Members I’ll Be Leaving

Family Doctor

My first health care team member was my family doctor. I had luckily found her early when I moved to Toronto after University. I moved to Toronto in 2005 after graduating from McMaster and one of my friends let me know her doctor was taking new patients. I lucked out with Dr. Segal. Over the years, she was courteous and quick with appointments but I never felt rushed or not listened to. After my MS diagnosis, I intuitively decided to start taking care of myself holistically. Reading about conventional and alternative medicine to ensure I was receiving well-rounded care. One of the first things I asked her was to do blood work so we could see where all my vitamin & mineral levels were. This is where we discovered that I had a Vitamin D deficiency at the time of diagnosis. She would print out my lab work for me and I’d take it home and put it in my MS binder so that I could show other practitioners like my Naturopath. She was always open-minded, non-judgemental and always helpful. I really lucked out with her and miss her care so much as I’ve never found something similar in Ottawa.

Naturopath

I had been seeing a Naturopath for years before my MS diagnosis who actually worked in a clinic where the doctor would requisition my lab work for me. However, I believe Ontario Health was cracking down on this so I had to shift and get my family doctor to do this. This wasn’t hard so at the time I decided to shop for a new naturopath who had experience with MS patients. This is when I found Dr. Rachel Corradetti. I’ve written about her before. She was the one who challenged me to stop doing so many things. At the time of diagnosis she was actually offering in-home consultations. So shortly after the diagnosis, she came to my condo and we did the intake interview and reviewed everything we could think of. We talked about a few lifestyle changes and she gave me my first supplement protocol.

Registered Holistic Nutritionist

Because of the reading I had been doing after my diagnosis, I knew my digestive health, irritable bowel syndrome, gut health might be an issue. At this time I didn’t truly understand the link between our gut health and autoimmunity. Because I had announced my diagnosis publicly on social media I received the recommendation to consult with Chantal Houde who is an RHN who also lives with multiple sclerosis. I thought why not and booked an online consultation with her. This is where I learned about leaky gut and the autoimmune paleo protocol. I was able to continue my research on gut health and had a few easy tips I could incorporate into my meal planning.

Functional Medicine Doctor

Because I was in such a learning phase while in Toronto I discovered the concept of functional medicine. I researched different practitioners and landed on one in Yorkville. While I didn’t love my experience with this practitioner we did a test for leaky gut to discover if I had it, and if I did, I had healed it. We also did a micronutrient test, which was expensive but really informative. We were able to optimize my supplement protocol from those tests. I also learned from him that I was dealing with adrenal fatigue. This was after my year of doing over 20 races in 2015. I was then able to address this once I moved to Ottawa.

Therapist

I’ve never shared publicly my experience of seeing a psychotherapist in Toronto. I went to see one after my diagnosis at a friend’s recommendation as I was having a really hard time dating and a lot of pain points were coming up for me again from the toxic relationship I had chosen to be in for several years before my diagnosis. I learned a lot in that time about how I think, what stories I had created in my mind and how I was processing relationships in this world. After reading “When the Body Says No” and understanding the mental health aspect that is associated with disease I thought this was an amazing addition to my health care team.

Acupuncturist

I was originally seeing an acupuncturist who came recommended by a friend for my athletic injuries. I was training for obstacle course races before and after my diagnosis and I remember going to my acupuncturist one day for sports injury healing. He asked me “When do you plan on getting married and having babies”. Which left me in a puddle of tears on his table and googling acupuncturists downtown. I was looking for someone much closer to my office that I could go to on lunch breaks or on my way home from the office. This is when I added Amrit Singh to my team. This was also before she blew up on social media as a sought-after cosmetic acupuncturist. She helped me discover through her TCM training that despite eating healthy and many foods I thought were ok on the Wahl’s Protocol I wasn’t able to digest the food and absorb the nutrients because of my timing of intake and intaking raw vegetables vs. cooked ones. She all but helped eliminate digestive problems for me and her tips I still implement to this day. Tips such as using warming spices in my morning smoothies vs. a green smoothie.

Ottawa Health Care Team Members I Found

Family Doctor

As I write this blog I have never found a family doctor as amazing as my Toronto one. It’s been a constant source of stress and tears for me. I even left an appointment last night in tears. My husband knows that he needs to provide full emotional support on days I have a doctor’s appointment. I need to just spend time looking for a new practitioner but it is definitely a full-time job in itself.

Functional Medicine Doctor

Finding a functional medicine doctor started out wonky for me in Ottawa. I had found a doctor off of google who seemed to be amazing. She had a great website, a podcast, and books so I thought this would be great! While I had one great experience with her treating some bacteria found in a stool test I had taken before leaving Ottawa. I got really frustrated with her because she charged me for a naturopath fee but as a family doctor, I also thought I could talk to her about all my issues. From there I found out she wanted me to book an appointment per issue as she is also an MD and was billing through our provincial health care. She also brought up new issues like telling me I had Pyroluria without treating the issues I had come to see her for. I remember specifically letting her know that I wanted to solve for painful periods but since I talked about anxiety in the intake form she wanted to solve for Pyroluria. She wanted me to do an expensive test which I passed on because my research showed it could have just been a nutrient deficiency which I already needed to supplement for. I also decided to address my anxiety and panic attacks with my Ottawa psychotherapist and reflexologist. After finding my new functional medicine doctor she actually took me off one of the supplements I had been taking for Pyroluria because I was now over-sufficient in B6.

My new functional doctor is going on mat leave the month that I write this blog so I’m going to have to fend for myself for a year. However, I’ve never felt more empowered or on the right track. When I moved to Ottawa I joined an AIP Ottawa FB group to find out where people were shopping for food and local information. From this group, I found out that many of the members were going to see a doctor at the Ottawa Integrative Cancer Centre. I called the centre and made my case to be a patient that wouldn’t take up too much of Dr. Junek’s time. I just wanted to see her maybe 2 – 3 times a year. I just needed a practitioner who was willing to requisition blood work and review it with me as my family doctor had flat out refused.

Therapist

I found the most amazing psychotherapist, Robin Harnden in Ottawa. While dealing with a lot of anxiety attacks, panic and stress with the move from Toronto to Ottawa. I was able to process through my mind thoughts and find some peace in what I was experiencing.

Acupuncturist

I’ve seen 2 different practitioners since moving. I thought I had found one I loved but she ended up closing her practice while dealing with a health issue so I’m back on the market for one.

Naturopath

I haven’t needed one since my functional medicine doctor was able to play this role. I believe they are one of the most important health care team members so I’ll search for a new one if I need a practitioner while my functional doctor is on mat leave.

What other practitioners do you love having on your team?

Autoimmune Thriving Yoga Retreat Recap & Scholarship Announcement

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The Autoimmune Thriving Retreat was a complete success despite a few hiccups! We came, we yogaed, we learned about Reiki and we ate a delicious fresh meal!

With the sun streaming in the windows on Sunday morning, I got up to let the dogs out. After making warm lemon water & coffee, I curled up beside our pup Rogue on the couch to meditate. I grabbed my notebook with my class notes written out and turned on my playlist. I then verbally taught my empty living room the morning restorative yoga class to practice.

11:30 am couldn’t come quickly enough. The morning seemed to go by so slowly!

Finally, I jumped in the car and drove up to Strathmere, a short 15 mins drive from our house. I found my Reiki guest speaker, Jo Tucker, sitting by the fire pit. A few women had also started to arrive. We gathered around our lunch table while waiting for the yoga room to open up. A yoga class was in the yoga room just before us so as we waited for them to vacate the room. I ran in like a mad woman to help clean up and set up the class. My set up called for 2 bolsters, 2 blocks and a blanket on everyone’s mat. Jo and I then set up the mats around the room near a wall space.

Restorative Yoga Practice

The wall space was important for legs up the wall pose at the end of practice. With 8 people in attendance, we actually had to close & lock the door and have one lady use that space.

Here’s a list of some of the things that didn’t go as planned but I’m just laughing about now:

My phone wouldn’t connect to the blue tooth speaker
We opened the windows as the room was quite warm and could hear people in the hot tub below.
The retreat cafe was quite noisy with the lunchtime crowd.
During the last few resting poses, someone from Strathmere kept knocking on the door to bring us our smoothies. I tried to ignore the knocking but after the third knock, one of the ladies whispered “I think you should get that!” to which I responded “yup I guess I should” LOL

None of these things seemed to bother anyone. Here’s hoping it was just their yoga teacher that was slightly worried it would ruin their experience.

The Yoga Playlist

Reiki Guest Speaker

After grabbing our smoothies (Arugula, Green Apple & Pineapple), readjusted our set up to get comfy, and got to listen to Jo Tucker tell us all about Reiki. She shared what it can do for people on a healing journey and her practice with clients. From there we moved over to the Retreat side and devoured our lunch around a long table. Lunch was absolutely amazing. From non-stop conversation, great food and laughter around the table you couldn’t have wiped the smile off my face if you tried.

Autoimmune Thriving Retreat Paleo 3-Course Lunch

I cannot wait to host the next one! I’m thinking the fall…

Autoimmune Thriving Scholarship

Ok so now the scholarship! As a part of the Autoimmune Thriving brand, I want to give back to the autoimmune community every time I do something for a profit. I set aside 10% of the overall profits from the Autoimmune Thriving Retreat to be able to gift someone in the Ottawa area (who can’t always take advantage of holistic therapies) with a massage from my RMT.

All you have to do is nominate someone or send in your story to apply yourself to robynbaldwin @ gmail . com. I’ll accept applications until May 21st and then get in contact with someone to arrange for the massage!