Can I Say My MS Is In Remission?

8 / 7 / 176 / 11 / 19

I’ve been feeling all the feels since my last annual MS Clinic appointment and needed to process them. I wasn’t sure what I wanted to share publicly with the blogging world but this blog is my outlet. This blog is my journal and how I express myself. My writing is my creative output and it fills me up.

I’ve also publicly shared my journey living with MS from my diagnosis to how I’m taking care of myself so it’s only fitting that I announce to the rooftop. That My MS is In Remission!!!

Cue Excited Baby Photo…

Ok, so first off I was scared to actually use the word remission. I only ever hear it used around cancer patients. So I, of course, used my trusty Google engine to look up the definition. Was it applicable to me?

Remission:

A temporary recovery? Hmmm…As I’m well aware, MS just doesn’t “go away”. As many resources will tell you there is no cure for the

As I’m well aware, MS just doesn’t “go away”. As many resources will tell you there is no cure for the autoimmune disease. However, if my annual MRIs do not show the progression of the disease, I have zero disability presenting itself and I have minimal symptoms (that are usually only brought on by workouts done in the heat) I am proudly claiming and exclaiming that my sidekick is in remission. Hell yes, it’s a diminution of the seriousness of the disease and I’m recovered enough that I’m ready to not let it define me.

Which I said I didn’t want to do but inadvertently did anyways by calling myself an MS Warrior in every single social media bio.

Ok so how do I know that I’m in remission? My MS is tracked on an annual basis by an MRI scan. I’ve only “officially” had the disease since 2014 but during the first year, it was being tracked every 6 months and then it moved to annually. This past March, I presented myself at the Ottawa Hospital as scheduled for the annual MRI. Stripped down to my skivvies, donned the ever flattering hospital gown, removed all earrings, hippie bracelets and necklaces (usually a mala) and jumped up on the MRI bed like a seasoned pro. When given instructions, about how not to move, I just nodded and said “Yup I’m aware” as I’ve done it many a time.

I had a pretty good feeling that there would be one or two new lesions in my brain due to my inability to process stress very well this year and they have consistently shown up when I’m not fully taking care of myself and how I manage stress in my life. However, the brain lesions are asymptomatic for me. I’ve asked many neurologists based on their location what could they affect in the future and I’ve been told they don’t know. The one on my spine which caused the initial symptoms at the time of diagnosis and cause symptoms when I overheat (based on where the myelin sheath was eaten away) actually “disappeared” a few years ago. Which means I’m doing well in reducing inflammation in my body so that the lesion no longer shows up on an MRI. A few months later, June rolls around, my MS clinic appointment shows up on my calendar, I ask Mike to come with me and we head into the clinic together.

My Ottawa neurologist: “You have 2 new lesions but one from last year’s MRI has disappeared”

I look at Mike, Mike looks at me. After the appointment we giggled, 2 minus 1 = 1 so I only have 1 new lesion 😉 MS math 🙂

After a neurological examination, lots of questions on my health care routine, how I’m feeling and any new symptoms (which I don’t have) so then my doctor says:

“So I don’t think we need to monitor you anymore. You seem very stable and based on the MRIs do you think you’ll change the way you’re taking care of yourself?”

I paused for less than a second.

“No. My healthcare routine is really good and I’m continually optimizing it with my alternative health care team.”

“Alright, then I suggest we don’t monitor you anymore with MRIs or appointments at the clinic. If anything changes, of course, please get in contact with us but it looks and sounds like you’re doing very well.”

Mike and I left and I felt torn. That’s it? That’s all. I’m free to go into the world without a conventional medicine practitioner looking over me. But then when I think about it. The only course of treatment that said neurologist has for me is pharmaceuticals which I’ve refused based on low efficacy and multiple negative side effects. I wanted to prove that I could take care of myself naturally and technically I just did. I guess, what did I expect? A pat on the back. A “You did good kid. It looks like you figured out how to live with MS and thrive in the process. Would you like to share your secrets with the rest of my patients so I can have the same outcome?”

I guess that was a little too much wishful thinking.

But if they aren’t worried about me, why am I so worried about not getting monitoring. I don’t need it. I’ve figured out the building blocks to my health. I’m a forever student of optimizing my health. I consistently ensure I’m compliant with my health care and voila. I will live a life of remission from MS. It’s my sidekick still just a way more silent one that I don’t need to shout from the rooftops that I’m battling. Sorry MS. I won this battle. You can hang out as my reminder that I can always take better care of myself. But I don’t need to Warrior against you.

So I’ve removed MS Warrior from my bios. You’ll still be able to read about my journey living with MS. I just won’t be broadcast that I live with this disease. Instead, I’m just gonna go out and live as Robyn instead.

Essential Oils For Multiple Sclerosis

4 / 12 / 175 / 31 / 22

Disclaimer: I personally use essential oils to help support my body in healing and supporting my immune system. These statements have not been evaluated by the Food and Drug Administration or Health Canada. My comments are not intended to diagnose, treat, cure, or prevent any disease. I simply use essential oils as a tool to assist my body in natural healing processes. As always, please consult with your health care team when incorporating new products into your treatment.

Ok since we’ve got that fancy disclaimer out of the way, I wanted to share how I, an MS Warrior (I like to call myself an MS Thriver nowadays) use essential oils. I’ve been asked in countless DMs and tagged in countless FB groups about how I personally use essential oils for multiple sclerosis, my health sidekick. So here is how I personally have incorporated essential oils for MS and support my body as it lives with confused T cells.

I believe in taking care of myself through the 6 pillars of health: nutrition, supplementation, movement, sleep, stress management, and reducing toxic load. This is how I use essential oils in each of these pillars of health:

Nutrition

I have chosen to follow the autoimmune paleo protocol. Here is a blog post I’ve written on my autoimmunethriving.com website about what it is and more. I use essential oils in my cooking and baking. I substitute essential oils for herbs like basil in stews, lime essential oil for fresh lime or lime juice in things like guacamole, and Madagascar vanilla for vanilla extract in decaf coffee or baking.

Supplementation

Once I figured out nutrition, I worked and currently work with a naturopath to figure out a supplementation plan based on deficiencies that I can’t get from nutrition. I get regular bloodwork done to figure out what vitamins and minerals I’m deficient in. I take the dōTERRA Lifelong Vitality supplements as a baseline all-around multivitamin and then supplement additionally where needed. I also take the Copaiba Softgels and Tumeric Duo Capsules.

Essential-Oils-for-an-MS-Warrior-Turmeric-Duo-Capsules

Movement

I’m just a happier version of myself when I work out or move my body daily. Movement for me could be anything from a weight workout, to cardio, to a simple walk after dinner. I use Deep Blue on sore muscles, I take Deep Blue Polyphenols if I’m extra sore (a heavy leg workout usually brings on 3 days of soreness), and I bring AromaTouch when I go to see my RMT for a monthly massage.

Essential-Oils-for-an-MS-Warrior-Deep-Blue

Essential-Oils-for-an-MS-Warrior-AromaTouch

Sleep

I believe that we can support our immune system simply by getting quality and an appropriate amount of sleep. Every night, I try different “concoctions” in our bedroom diffuser to improve our sleep. I love just Lavender or Serenity and then if I’m craving something not so floral I’ll put Cedarwood in the diffuser. If I’m struggling to fall asleep I’ll also take a Serenity Softgel complex before bed.

Essential-Oils-for-an-MS-Warrior-Lavender

Essential-Oils-for-an-MS-Warrior-Cedarwood

Essential-Oils-for-an-MS-Warrior-Serenity

Stress Management

I believe our body’s reaction to stress is so detrimental to our health. I’m the type of person that really doesn’t do well with emotional stress and I’m still figuring that out on a daily basis. I love using oils in my home office to the kitchen to diffuse oils based on emotional aromatherapy. I use citrus oils to uplift my mood to grounding ones when I feel a whole bunch of crazy coming on. I love our calming blend Adaptiv and I also take the capsules if I need extra support feeling my feelings.

Essential-Oils-for-an-MS-Warrior-Adaptiv-System

Reducing Toxic Load

I love that I have been able to slowly transition toxic products from cleaners to laundry detergent to a more DIY cleaner ingredient-based. I love making up my own DIY cleaning sprays with water, vinegar, and lemon essential oil and using dōTERRA laundry detergent or my own concoction. dōTERRA also launched the new abode line this year

Essential-Oils-for-an-MS-Warrior-Abode-Line

In addition, to supporting myself through the 6 pillars of health I am also specifically focused on reducing inflammation in my body which is a common theme for those living with autoimmune disease.

Reducing Inflammation

I believe that by reducing inflammation in my body I support my cells so that they don’t get confused. I do this by nutrition (eating an AIP-based meal plan), using spices like turmeric powder in cooking and drinking juice like tart cherry juice. These are just a few things I do to reduce inflammation (above and beyond removing gluten, dairy, and nightshade veggies from my diet). I also ensure I take rest days after hard workouts, ice baths after streneous physical exercise and I love to take nightly Epsom salt baths. I love adding Lavender or Frankincense to the bath and I will apply Turmeric or Copaiba topically to areas of concern.

Immune System Support

Last but not least, this school of thought can be very polarizing in the MS community. Since MS is an auto-immune disease and has to do with our immune system attacking itself many believe that “boosting” our immune system will boost the T cells that attack our myelin sheath. I’m very careful with words and actually never use the words boosting an immune system.

I personally am of the school of thought that if I can keep my immune system optimized and strong I simply need to make sure that my T cells won’t have a chance to become confused by toxins or sickness and attack my body. I very rarely get colds now that I take care of myself differently. Since I have chosen to not take a DMD / DMT (MS drugs) I don’t worry about how supporting my immune system will affect me. For those on DMD’s which suppress the immune system, I can understand why there is a fear in “boosting” the immune system which could cause it to increase its attack on the body. This choice will be so personal for everyone in how they choose to support their body in healing.

I support my immune system by diffusing OnGuard and Breathe (called Easy Air in Canada) in our bedroom diffuser if I feel a cold coming on. I’ll make garlic tea with Oregano essential oil, suck on OnGuard lozenges, I’ll apply OnGuard directly to the bottoms of my feet (for easy absorption), I’ll drink lots of water and tea and get adequate and ample sleep!

Essential-Oils-for-an-MS-Warrior-Breathe

Essential-Oils-for-an-MS-Warrior-Oregano

dōTERRA Starter Kits

If you’re interested in getting started with dōTERRA, I would recommend starting a shopping account with one of these starter kits. They come with the top ten essential oils (mentioned above) and then we can work together to plan out which essential oils or supplements you might want to add to a future order together. I love guiding my personal customers to make health action plans and achieve them.

Ps. These starter kits include the wholesale membership fee ($35 USD, $42 CAD) which allows you to purchase products whenever you like at 25% off retail prices.

If you’re reading this and you have MS. My heart goes out to you and whatever emotions you’re dealing with, with the diagnosis. Just know that you are so empowered in today’s day and age to take care of yourself. If you’ve been living with MS for a while and are still searching for answers, hopefully, something I’ve said has sparked a light bulb and you’re going to dive into more research and knowledge for yourself.

Thriving is so much better than Surviving.

How to be friends with someone who’s “sick”

2 / 22 / 175 / 25 / 18

Over the past 2 years, I’ve been asked a few times by friends what is the best way to show up for someone who’s been diagnosed with a disease.

While I’m definitely not an expert, and everyone needs something different in friendships, however, here are a few things I’ve learned I’ve needed as I learn to live with my auto-immune sidekick.

After my diagnosis with MS in December of 2014, I shared a post about People’s Reactions to a Public Diagnosis. I got amazing feedback from some of you, who let me know that they hadn’t really thought about how the “I’m Sorry” comes across and how they were making a more conscious effort of offering practical help to others as their friends deal with new health issues.

While this post was very personal for me and how I react to others, I’m glad that it may have helped other’s as they show up for their friends during a health crisis.

So this post is inspired by a friend who has had to be there for some of her close friends this year and as she deals with her own health diagnosis this year.

Hold space for them to be heard. Moral of the story. Learn to just listen, without advice or opinion. This one can be so difficult. If you’re a chatty Kathy, like myself, this one is something I’m still working on.
Share resources you are aware of so that they can go through them when they are mentally ready to tackle educating themselves. But ask first!
Share what a healthcare practitioner has done for you so they can imagine why they would reach out to a naturopath, or acupuncturist, etc
Offer practical help, from going grocery shopping for them, to driving them to an appointment, to picking up supplements for them, or simply suggest a relaxing night like a movie night where they don’t have to talk or think but simply have company as they process new emotions and thoughts.
Show interest in what they are doing for themselves. My friends have listened to me countless times on how I’m adapting my meal plan or supplements or self-care as I learn to live well with MS. Simply being listened to and heard was amazing.
Don’t treat them like babies. I want to feel strong and be strong. If I allow others to treat me as weak then I’ll end up treating myself that way as well. If that makes any sense.

That’s my two cents, I hope it helps as you show up for others in this world.

If you have been diagnosed with a sidekick, what have your friends done for you that have impacted your healing process?

My Thoughts on Pyroluria

10 / 17 / 165 / 25 / 18

Disclaimer: The information in this post is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education and should not be used as a substitute for professional diagnosis and treatment.

Do I really have another disease that is recognized by some doctors but not all? Well that’s nice and confusing…

After a great appointment with my new functional medicine doctor a few weeks ago I was feeling like I was actually getting a handle on my digestion problem that I’ve been solving. I have an action plan and I’m staying compliant with the treatment of bacteria overgrowth. But during the appointment I also mentioned that I was feeling abnormally anxious and stressed lately. I’m usually really good at processing stress and using coping mechanisms like prayer, meditation, epsom salt baths and deep breathing to de-stress but it hasn’t been helping lately. So my new doctor then brought up that I may have another genetic disease…

“Have you heard of Pyroluria?” she says.

Nope. Nuh huh. Huh? What’s that? says I.

Here is a definition of Pyroluria that I found several times on different accredited websites:

Pyroluria is a genetically determined chemical imbalance involving an abnormality in hemoglobin synthesis. Hemoglobin is the protein that holds iron in the red blood cell. Individuals with this disorder produce too much of a byproduct of hemoglobin synthesis called “kryptopyrrole” (KP) or “hemepyrrole.” Kryptopyrrole has no known function in the body and is excreted in urine.

Kryptopyrrole binds to pyridoxine (vitamin B6) and zinc and makes them unavailable for their important roles as co-factors in enzymes and metabolism. These essential nutrients when bound to kryptopyrrole are removed from the bloodstream and excreted into the urine as pyrroles. Arachidonic acid (an omega-6 fatty acid) also becomes deficient.

There are 2 ways that health practitioners are diagnosing Pyroluria.

Method 1: Questionnaire – Do you have a number of the following symptoms associated with this disease?

Method 2: An Expensive Urine Test

I completed the questionnaire which is free and I scored really high.

I started doing more online research after the appointment. I found interesting articles that believe Pyroluria is real and others that believe it’s a myth. Am I interested in trying to find a US lab that can test for this when it’s not a well recognized disease? Not really.

And I already have some knowledge at my fingertips…

I know for a fact that I’m deficient in B6 and Zinc based on the Micronutrient Deficiency Test I conducted with Dr. Dempster in March. The test is performed by SpectraCell Laboratories on your lymphocytes to see what they’ve been able to absorb. vs. many blood tests that only tests the vitamins and minerals in your red blood cells which is a shorter term picture of how your body is doing.

Do You Know If Your Poop Is Healthy?

10 / 3 / 165 / 24 / 19

Disclaimer: I’m about to talk about poop and how it relates to your health. If you don’t like to talk about poop read no further and have a spectacular day. The information in this post is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education and should not be used as a substitute for professional diagnosis and treatment.

In my quest to heal my digestive health I had a comprehensive stool analysis done in March of 2016 to find out if my poop is healthy. With the excitement of the move from Toronto to Ottawa I received an action plan from my Naturopath in Toronto but was absolutely horrible at compliance so I’m starting from scratch this month after meeting with a Functional Medicine Practitioner here in Ottawa.

The test found 2 different things that have been causing problems with my digestion.

Microscopic Yeast
Imbalanced & Dysbiotic Flora that includes Alpha Hemolytic strep, Citrobacter Amalonaticus, Gamma hemolytic strep and Staphylococcus Aureus

The lab also tests for what natural & conventional treatments would work best to kill off the yeast and bad bacteria. From a natural standpoint, Grapefruit Seed Extract was tested to work the best. After discussing the action plan with a Naturopath in Ottawa, I’ll be taking the Grapefruit Seed Extract 3 times daily. 1 capsule = 250mg.

I’m going to stop all probiotic supplementation at the moment while I kill off the yeast & bad bacteria overgrowth. After one month we’ll re-test my stool to see where my body is at before putting together an action plan for re-populating the good bacteria in my gut by ensuring the yeast & bad flora have actually been killed off before supplementing with specific strains of probiotic.

Here’s to a healthy gut and healthy poop in the future on my continued quest for better digestive health.