People’s Reactions to a Public MS Diagnosis

1 / 14 / 156 / 7 / 22

When I decided to make my diagnosis public I didn’t realize how many people would reach out to me. To be honest, I was a bit shocked at the number of incoming public & private messages. No one wants to comment on my races or food prep as much LOL. Some of the messages warmed my heart, some upset me, some made me cry happy tears from the support and some made me really, really angry. I think a broad spectrum of reactions & feelings is ok due to the volume of sentiments I received. I know I’ve made my life quite public when I made the decision to share my health journey with others. My goal in being open was to gain support from my tribe & to hopefully help another newly diagnosed MS patient in the future as they navigate their journey.

After receiving something that can be perceived as bad news there are several different ways people react. I’ve been grouping them into buckets to process where to spend my time in responding. It’s been overwhelming to write back to everyone. I’m definitely the kind of person who wants to make sure I’m responding though since someone has taken the time to reach out. For me I’ve had to choose who to respond in depth to and who to just thank and file away.

First off you may have noticed that I called this perceived bad news. If you have been following my blog or social media for a while then you know I’m uber positive and optimistic at how I attack life. I think it’s apparent by how I call MS my new sidekick or a new obstacle to tackle or a new way of living and something that I just have to deal with. It is how I personally need to deal with my diagnosis. I flip things immediately to the positive because that is how I “get through” things. So keep that in mind as I categorize those who have reached out and my reactions as such.

The objective of this blog post is to make others aware of what they can potentially expect if they announce a diagnosis and also to those who hear a diagnosis and want to reach out. Just think about your audience whenever you say something about someone “going through” something vs. what you would want to hear. Grief processes are very very different for everyone and we all deal with things differently. So please just keep in mind how you choose to react when you reach out to someone going through something in the future. Take cues from them. Overall I’m beyond grateful for the support, I’ve voiced my concern on what I don’t want to hear and have been thankful for every single message sent my way.

Those Who Know Me From Social Media

These sentiments just basically echoed everything I put out on social media. “You’ve got this!” “If anyone can handle MS it’s you”, “You are going to continue being the amazing Alpha Female that you are”, etc. These statements confirmed one thing for me that my tribe on social media gets me. Those that love to see what I post on a daily basis love me for my positivity and optimism and echoed it right back. Thank you for all your support and boosts of uplift. I can’t even begin to thank everyone for the support you gave me over the past month and a bit. When I’m blue and ask for pictures of my Instagram #theface warmed my heart so much!

The Opinion / Advice Givers

While some of this advice was useful I got a broad spectrum of opinions & advice on how I should tackle MS. I’ve read all the messages and filed things under I should look into that or woah that’s crazy who are these people? I’ve been so grateful for all the articles & book suggestions. I’m even reading Wahls Protocol because of several messages. I think it’s just the volume of messages I’ve received that were overwhelming but no one how many private messages I’ve received. I’ve bookmarked over 100 links to read. Everything is being examined with a grain of salt and slowly being processed. The advice-givers who told me I immediately needed to get acupuncture or look into this specific treatment were scrutinized and filed or deleted. I have to take everything into consideration and then do what my team of professionals and I believe is best. I’m grateful for these messages despite how overwhelming they became.

The Woah Is Me Reaction

These are the ones that angered me and hurt me. I get that in the face of grief the immediate reaction is to say “I’m so sorry” or “THAT’S SO HORRIBLE!” It just made me so mad. I don’t need or want pity. I’m not sorry so I don’t want you to be for me. There are so many worse things in the world that I could be going through. I truly believe that because I’ve gone through having to call off a wedding that this obstacle was so much easier to move into a positive mindset. I’ve already had a massive storm in my life. This is just a new blip. So I don’t need sadness because I’m so focused on being happy. I felt responsible to bring people out of their sadness if that’s what they portrayed to me. I even got messages from people who thought I was dying! To those, I had to explain the severity of my diagnosis. If you don’t understand something please take the time to google before reaching out to the person. I do wonder… do you think someone’s sad reaction is based on them thinking “what if this happened to me?” I think it’s best to look for cues. There are 4 stages of grief: denial, depression, anger & acceptance. I moved to acceptance within the span of one day and that’s what I put out into the world. If you are supporting someone in another phase then perhaps they want the sorry. Me? I never wanted to feel sorry about this 🙂

The Practical Help Offers

These were amazing. I had friends who offered to catch me at races next summer or take me grocery shopping if I was dealing with exhaustion (a symptom). Although I got a ton of offers from acquaintances that I hardly see that said “let me know if I can do anything for you” they are just so vague and non-committal that I would never tell a stranger “hey you know what? Today my hand went numb again, can you pick me off of my condo floor while I cry?” I do love how much support I received on offering to do things for me but a vague offer just came across as very empty and standard like they felt the need to say it vs. wanted to. I know I’ve been guilty of saying this in the past so I’ve definitely learned that in the future I’ll offer something practical vs. something vague and hope they take me up on the offer.

As always, these opinions are mine and mine alone. I have no clue if they come across negatively, not my purpose at all. I just wanted to open up the world of what I went through in terms of people’s reactions to news like this.

ONDAMED® Technology at Soul 7

1 / 9 / 156 / 8 / 22

So I reported in my 1st week with MS blog post that I was also going to seek treatment at Soul 7 including all my other holistic practices. The healing technology facility in Toronto has the use of an Electromagnetic device called ONDAMED® that I’ve received 3 treatments on so far. If I had to explain what it does in 3 bullet points the easiest way would be:

1. The ONDAMED Biofeedback System applies electromagnetic impulses in rhythmic sequences.
2. The changing of the magnetic field structure of the impulse induces reactions in the body.
3. The impulses induce effects that stimulate the autoregulation of the body.

Source

And by auto regulation I understand it to mean my body starts to resonate at optimal levels of health to heal or keep itself healthy.

Before I got started I wanted to ensure I was doing research on the technology being used on me. I started off with a study done by Thomas Jefferson University on pain reduction.

“The pilot study analyzed the safety of the ONDAMED® Pulsed Electromagnetic Field device. The treatment protocol was only 3 sessions since the purpose of the study was to document safety only. What was unexpected is that a significant reduction in pain was reported with just 3 sessions. The recommended protocol for ONDAMED® is at least 10-12 treatments.”

Then I wanted to find case studies specifically for MS treatments. Has this worked on others with MS? A patient Deirdre had ONDAMED® treatments from the 13th of February till the 15th of May 2013. It was very apparent that there had been many improvements in Deirdre over this short time.

She reported:

Improved energy
Improved sense of wellbeing/mood – clear head
Better digestive system
Increased balance and coordination -ie. Deirdre can now again dress and undress and do her buttons. She can blow dry her hair. She can again stand while showering. Deirdre can bend to load the washing machine and even squat. And Deirdre is now again wearing her runners and is able to lift her feet so as they don’t catch the floor.

Here’s how the process has worked for me so far. On the first day, I was scanned for energy blockages. A neck device was placed around my neck (see selfie below) and Bob, the founder of Soul 7, applied electromagnetic resonance to my body while feeling pulse spikes. The pulse spikes would indicate energy blockages in my body.

The machine managed to alert us to blockages in my head, neck & intestines. The blockages correspond to frequency numbers that I would then be treated at later. I found this fascinating because my MS lesions are in my brain, and neck and I had been dealing with intestinal problems after the steroid treatment. The next time I came in I had a scan that was done to find the most “important” blockage on my left & right side. On my second treatment, we started treating both of those areas.

On my third treatment, we decided to treat my head & intestine area as I’ve been dealing with gastrointestinal problems. I’m happy to report that based on food changes & the ONDAMED® treatments my intestinal problems are slowly getting better. I’m excited to receive more treatments and to record my progress on symptoms.

If you’re curious about finding out more here is the website for ONDAMED® & Soul 7.

Registered Holistic Nutrition Consultation

12 / 18 / 146 / 8 / 22

So my next avenue of care was to delve into what I’m using to fuel my body. I am a big fan of clean eating and most people when looking at my weekly meal plan would say I’m the healthiest person they know. But this doesn’t mean that I’m eating to heal my body of an autoimmune disorder & its symptoms. After my diagnosis post, I received a million and one suggestions of what to do. They are overwhelming & welcomed all at once. Although I love the information it has been a lot and I need to sift through it.

One of the first videos I watched is by Dr. Terry Wahls called Minding Your Mitochondria

I downloaded her book The Wahls Protocol onto my Kobo to dive into. So far I love her straightforward writing approach and the way she explains science to a “lay person”. My Naturopath has also recommended that I read Grain Brain. There are so many books out there so I’ll slowly make my way through them.

My next step was to contact a Registered Holistic Nutritionist. I was recommended to talk to Chantale Michaud from Eat Heal Love. She was diagnosed with MS in 2001 and has been relapse-free since 2007. She decided to become a holistic nutritionist and went back to school. She currently practices in Guelph, Ontario but does Skype consultations. I booked a mini nutrition consultation because I have such a good regime that I just need to know what to tweak. What needs to go and what can stay.

These tips are built for me & what I currently do. I have paid for her services so please do yourself a favour if you are reading this and consult an expert yourself and don’t just do what works for me as I already incorporate so many healthy eating habits.

Here are my top 10 tips that I’ll be adopting into my meal plan (because I don’t like saying the word diet.)

1. Avoid flax seeds & hemp oil during symptoms/episodes as they bind to nutrients and make it harder for my body to absorb them.

2. More Omega 3 vs 6 & 9. In my Naturopath appointment post I mentioned that I’ll be incorporating NutraSea + D back into my green smoothie.

3. Less steak & more fish. I eat flank steak basically every day so I need to try and reduce that to 3 times a week and up fish to at least 4 times a week. Red meat can be very acidic in your body and eating more fish will give me the omega 3s I need for anti-inflammatory properties.

4. Add more seaweed, which contains iodine into my diet. This information also comes from Dr. Wahls so I’ve already started incorporating this into my weekly meal plan with roasted seaweed snack packs. I used to use Spirulina powder so this will be easy to incorporate into my green shakes.

5. Don’t drink water with meals so my enzymes can properly digest my food. I used to take enzymes with my protein meals so I may start doing this again with my steak & chicken meals.

6. My naturopath recommended 8,000 IUs a day and Chantale recommended I split the dosage into 3 times a day vs. just twice a day. I was taking 4,000 at breakfast and 4,000 at dinner for ease of memory.

7. Add Coenzyme Q10 back into my supplement routine. Our bodies use it to produce energy for cell growth and maintenance. It also functions as an antioxidant, which protects the body from damage caused by harmful molecules. I have a list of foods to delve into or I can look into supplementation.

8. Cut nightshade vegetables out while I’m experiencing gastro intestinal problems. Bye bye tomatoes & peppers.

9. Incorporate shots of tart cherry juice or cook with turmeric for their anti-inflammatory properties. When cooking with turmeric I need to pair with black pepper for absorption.

10. My blood work post steroid treatment showed pre-diabetic properties to it so we discussed what I could eat to support my pancreas. I’m going to cook with a bit more garlic, get some artichokes for next week and I have a big cabbage I need to do something with!

Before the session she sent me a document on “Living & Thriving with MS – Quick Start Guide Part 2” and on “Autoimmune Disease & the Leaking Gut Connection” to review before the consultation. Post Consultation she sent me a review of the steps I need to take and a list of recipes (see below) I can use. She was so worth the cost!

Breakfast Recipes

Banana Nut Millet Porridge
Quinoa Breakfast Bowl
Banana Nut Blueberry Muffins
Asparagus Scramble
Kale Omelette with parsley and green onions
Anti-inflammatory Smoothie

Lunch/Dinner Recipes

Roasted Cauliflower Soup
Spaghetti Squash Pad Thai
Coconut Curry Sweet Potato Lentil Stew
Tabouli Quinoa Salad
Apple Carrot Coleslaw
Mixed Veggie Leafy Green Salad with Cucumber Dressing
Sweet Potato Salad
Baked Lemon Cod with Asparagus

Snack Ideas

Roasted Garlic Cauliflower Hemp Seed Dip
Kale Chips
Frozen Blueberries
Apple Slices with Almond Butter

Do you eat an anti-inflammatory diet? What are some of your best tips for nutrition?

Follow-Up MS Neurology Appointment

12 / 17 / 146 / 8 / 22

Monday was a busy day for me. I woke up feeling still slightly foggy and with a nice headache that felt like it could’ve turned into a migraine. I had received an Intro doTERRA kit from Ange of Hol:Fit which has a peppermint essential oil in it. I’ve read that this is great for easing headache symptoms so I put some on my temples and along my hairline. I smelled like peppermint for the rest of the day but it worked!

I visited my neurologist, Dr. Baskind, at his office on Monday afternoon. Alas, there was no bow this time. He had a senior resident with him so I got to tell the quick story of how I was diagnosed and explain that my symptoms have dissipated. The feeling has returned to the entire right side of my body except for my hand (which is still a bit pin & needly). As I write this post it’s almost completely gone so I’m hoping my symptoms are cleared by the end of the week. I pulled out the extensive blood work my Naturopath had done so he could take a look and then my notebook with questions. I’m going to write them down in case a recently diagnosed MS patient ever comes across this blog post and is curious about what to ask.

1. How many MS patients do you currently treat? Do you specialize in MS or are you a general neurologist? He is treating around 60 patients and is a general neurologist. He even said he’d be willing to refer me to the MS clinic at St. Mike’s where they have specialists.

2. What type of MS do I have? I started my research on the MS Society of Canada webpage. I have the earliest form which is called Clinically Isolated Syndrome as I’ve only had one attack. Based on my MRIs and the number of lesions I fit the McDonald Criteria.

3. I asked how did he rule out other neuro disorders? The MS Society page also explains that your doctor should rule out NMO, ADEM, Lyme disease, CFS & Lupus. He explained that my symptoms & MRI scans are indicative of MS only. He did say I could receive a spinal tap but I said no I’m ok I’ve already accepted my diagnosis. I will go to the MS Clinic for a second opinion because I believe that’s smart but I really don’t want a needle in my spine.

3. Are these symptoms I experienced over the past week normal for being on the steroid treatments? Being tired, shortness of breath, and having a foggy brain are all side effects of the treatment and nothing was out of the ordinary.

4. Where are the lesions on my brain? What am I at risk for? He showed me where my lesions are. The majority of them are on the corpus callosum. This is a thick band of nerve fibres that divide the left and the right brain. He told me it’s a pretty useless part of the brain. Although I’ve now read that this part of the brain transfers motor, sensory, and cognitive information between the brain hemispheres. Currently, these lesions are asymptomatic. I asked what type of symptoms should I be wary of in the future and he said it’s hard to tell.

MS Brain Scan — Not my brain. But how MS lesions look like on an MRI scan.

4. What type of MS am I at risk for moving forward? There are four types of MS. Relapse-remitting (RRMS), secondary-progressive (SPMS) and primary-progressive (PPMS) and progressive-relapsing (PRMS). I’ve decided I’m never going to get these types and will live with MS for the rest of my life. A doctor can’t be sure of what you’re at risk for moving forward but I was told I don’t have risk factors. I was told that risk factors for developing more severe cases usually present themselves in males, those with unhealthy lifestyles and other races. I haven’t done enough research on this but I believe that based on my healthy lifestyle and how I’m going to treat this holistically I won’t have to worry about it progressing.

5. What activities can I do? Yes I know I asked about fitness even before treatment. My exact words were… “Can I jump off a 10-foot wall?” My neurologist paused and asked me why this was important? “Oh, I’m an Obstacle Course Racer!” I was so worried about impact activities but I don’t have problems with my spine it’s with my central nervous system so I’ve been cleared for all crazy activities and of course must just listen to my body. I went for my first run since the beginning of October and though it was short and sweet and hard, it was glorious. Just look at my smile!

6. What treatment are you recommending moving forward? There are so many options from IV treatment, to self-injectables to oral pills. This is all going to be impacted by my health insurance and my research of clinical studies and to be honest side effects so onwards I go into the world of conventional medicine.

I also had the chance to discuss with a Registered Holistic Nutritionist what I can do in my meal plan weekly but this post is getting long so I’ll post that tomorrow.

My First Week with MS

12 / 13 / 146 / 8 / 22

So on Tuesday, December 2nd after receiving my first steroid IV treatment in the hospital I was sent home to sleep in the comfort of my bed. Which was glorious! I was more excited to brush my teeth than anything.

My immediate treatment was to go through 3 doses of Solu-Medrol by IV (once in the hospital) and at home over the next two days. They shipped me the medication and an IV pole and arranged for a nurse to come in every day for treatment. She would hook IVAN the IV (yes I named him) to the medication on the IV pole and the drug would run through my system for an hour before she unhooked me and left. Solu-Medrol is a corticosteroid. It works by modifying the body’s immune response to various conditions and decreasing inflammation. We definitely made jokes on social media with my fitness world peeps that I was going to get jacked on steroids! Again I always have to look for humour.

The hospital sent my blood work off to check for viruses that could be sitting dormant in my body. Being on the steroid treatment and lowering my immune system meant that if I had dormant viruses in my body they could now take effect. Fortunately Hep A, C & HIV tests all came back negative. I was also asked to go to my family doctor for a TB test which also came back negative. Yay for positive news!

Over the next three days, I felt ok. I rested on my sofa bed, which my mom was sleeping on while staying with me, and called in for every meeting at work that I could so I could listen in or contribute. I wanted to make sure I didn’t lose any details at work even while I was resting and my office was very accommodating to calling me in. My last IV treatment was Thursday and I was so happy to get rid of IVAN. Friday, my mom and I had to run a few errands. We went to the doctor’s office for the TB test results, we had loaded up a bunch of used books and dropped them off at the used book store, drove down to Kensington Market for probiotics at my favourite health food store, grabbed healthy grass-fed meat at Sanagan’s meat locker and takeout from Fresh on Eglinton and then drove by the hospital to get my MRI scans on CD. By the time we got home, I was utterly exhausted and couldn’t explain it. I’m used to functioning at high levels and I didn’t feel like I was exerting myself but I do understand that my body needs rest more than ever.

Later that night I felt like I could barely get a breath in. I felt like my chest was being squeezed. All weekend my side effect symptoms were getting worse. I felt moody. Happy one minute and tired and sad the next. I was still having shortness of breath even while resting. I felt like I had a brain fog & I was having trouble thinking rationally. So I’d head to bed at 8 pm every night and sleep it off. Monday I was feeling better and I wanted to get back to the office. My only worry was that the Solu-Medrol solution may lower the ability of my body to fight infection. I was told to avoid contact with people who have colds or infections. It’s flu season in Toronto and everyone and their mother seems to be sick so I was a bit hesitant to join the real world again. I managed to get back into the office but got really tired and had to leave early most days my first week back.

In addition to immediate steroid therapy, I sprang into making appointments with many of my health care providers. I made an appointment with my Naturopath to discuss supplements, reached out to a Registered Holistic Nutritionist for a consultation on what I eat, made my follow up appointment with my Neurologist & emailed Soul 7 who I had visited back in October for a tour of their new healing facility in Yorkville. I believe in holistic health. I believe that I need an MS army of specialists to treat me and I intend on getting total care instead of just one avenue of care. Below are the Naturopath & Healing Wellness tactics I’m exploring.

Naturopath

Monday morning I went to the blood clinic early for blood work for my Naturopath. I’m seriously tired of needles. Wednesday morning I went to see her in the morning to review the blood work results. I also brought a bag with all my supplements in them for a full ingredient review. The good news is that the majority of my supplements are great. I need to take some of the supplements more consistently but I’m glad I have an action plan now.

My Current Supplement Regiment

HMF Forte Probiotics: 2 capsules in the morning with my warm water & 1/4 fresh lemon juice

Now Vitamin D-3: I’m currently deficient so we raised my daily IUs from 4,000 to 8,000. Taken with breakfast.

Now Vitamin B – 50: I currently take 1 capsule with my breakfast

Traumeel: I just recently bought oral pills which help in reducing inflammation. I take 3 daily.

NutraSea + D: I bought a small bottle so I can add a spoon of this to my green smoothies. I haven’t been diligent enough with getting fish oil in my diet and this has added Vitamin D to it.

I’m almost finished with my Ubermag so I’ll be looking for a new brand after this bottle is done as it’s too difficult to find in Canada.

The only supplement I have to put on hold at the moment is ReloraPlex which I was taking to balance my high cortisol levels.

The only new recommended product I should start taking is Pure Encapsulations – NAC which is a free radical scavenger that helps create glutathione in the body. Glutathione is used for maintaining the body’s defence system (immune system) which I need to build up so it stops attacking my myelin.

Magnum Primer: I take one pack daily with my red meat meal of the day. My naturopath loves this product and thinks it’s the perfect general health maintenance product on the market. It has the Omegas my body needs, a digestive enzyme for my gut health and is loaded with a ton of great vitamins & minerals.

In other great news, we took a deep dive into all my Magnum Supplements to ensure I’m ok to start taking them again (I’ve been off a few for the past 3 weeks), especially when I’m able to return to the gym. I’m cleared to take DNA (strength product) & Rocket Science (energy) pre-workout, Hi5 (BCAAs) intra-workout and Quattro (protein) & G (glutamine) post-workout. Glutamine will be so important for ensuring my gut health is increased post the steroid treatment. I can try Volume (muscle pump product) when I return to the gym. The most interesting thing we found is that Mimic (insulin mimicker) is actually imperative for me to take right now. My body is reacting to this diagnosis with massive stress and it thinks it’s diabetic based on my blood work so Mimic will be instrumental for me to regulate my insulin.

Disclaimer: This is a vitamin/supplement action plan reviewed and suggested by my naturopath. Please see your health care professionals before taking anything new.

Soul 7 Healing Technologies

Thursday evening I went to Soul 7 to consult with Bob Berman, the founder & owner. We sat and chatted for 30 mins about my diagnosis, symptoms and the technology that Soul 7 has. I remember everything he told me during my first visit but we talked specifically about how they can help with an autoimmune disease. He used the ONDAMED biofeedback machine on me to scan where I am having what he calls energy blockages.

What fascinates me is that he asked me to not tell him where the lesions are on my body. He placed a collar around my neck and the machine releases subtle stimulation. Bob felt my pulse and if it spiked he would write down the number associated with the spike. So without knowing where the MS lesions are the machine was able to identify where the lesions are on my body. He is going to treat me with the machine over a series of 20 appointments. In the meantime, we acknowledged that I needed to start boosting my immune system back up to heal itself. I spent 30 mins on the Pulsed Electro-Magnetic Field Therapy (PEMF) bed. This technology is FDA approved for reducing pain and tissue swelling. While napping on the bed I also listened to a 20-minute guided visualization created by Dr. Clifford Saunders, Ph.D. that addresses the mind-body connection of dealing with stress.

After this treatment was done I moved over to take another 20-minute nap on the Neuro Muscular Vibration Therapy bed. I had tried the larger beds last time I was here and raved about the most relaxing nap ever. The bed emits multi-frequency acoustic vibrations which transmit suggested muscular and mental commands through the central, sympathetic and parasympathetic nervous systems. They placed a heating pad on top of me to keep my core body temperature high and after the two naps, I was beyond relaxed.

I left feeling calm and peaceful and I’m excited to see how the treatments alleviate my symptoms and help me heal.