Chronically Foxy: Multiple Sclerosis Fitness Advocate

🏳️‍🌈🏳️‍⚧️💞

Join Us for an Evening of Inspiration and Community! Join us for the remarkable stories, challenges, and triumphs while gaining invaluable insights into navigating life with MS from an LGBTQIA+ perspective.

Thissss. 👏🏼👏🏼👏🏼

For eight years, I've known that I have Ehlers-danlos syndrome.

I have every symptom: the joint hypermobility, the stretchy skin, the easy bruising, poor wound healing, fatigue, chronic pain, widespread arthritis, and more.

My primary care doctor, gastrointerologist, hip specialist, spine specialist, hell, even my dermatologist all agree that I have hEDS. and yet, none of them are qualified to diagnose me, so I remain officially undiagnosed.

But today, thanks to the ceaseless efforts of my neurologist, I filled out intake paperwork to see an EDS specialist for diagnosis 🥹🥹🥹

(Goofy pic for attention and because I'm so dang happy and relieved 😭)

🦊 Types of Multiple Sclerosis: 🦊

🚩 CIS: Clinically Isolated Syndrome - Often a precursor for MS having a similar relapse episode, but is not classified as a full blown MS relapse; some people never develop MS, however, some may be diagnosed later down the road.
🚩 RRMS: Relapsing Remitting MS - Having attacks/relapses which fade away partially or completely.
🚩 SPMS: Secondary Progressive MS - A stage often coming after RRMS. Disability steadily worsens over time.
🚩 PPMS: Primary Progressive MS - The first (primary) symptoms show immediate progression and worsen over time without sudden relapses like in RRMS patients.

🎗️March is Multiple Sclerosis Awareness Month. I am a number in the statistics. I am a patient number with the diagnosis Relapsing Remitting Multiple Sclerosis. I am more than a number. 🎗️

Source: https://www.healthline.com/health/multiple-sclerosis/facts-statistics-infographic

I never wanted to be born let alone end up with something like this. Taking an anonymous health-related survey, one questions asked, “how many times have you visited a doctors office in the past year?”

I about threw my phone into the wall when I checked the answer “more than 15 times”.

It’s totally okay to be angry and feel the way you do.

Most of us become masters in the art of adaptation.

Sometimes something unexpected and awesome comes from adapting. For myself, it led back to writing. Other times, it’s the dreadful motions of surviving.

- 8/15/22 diary entry

🎗️March is Multiple Sclerosis Awareness month. I was diagnosed with MS in 2020. This month, I am sharing my journey. 🎗️

It’s March and I’ve already been relying on my ice packs this weekend. 🫠

When I say I have heat sensitivity, most don’t realize what happens to me feels similar to heat stroke.

Uhthoff’s phenomenon is characterized by a temporary worsening of MS symptoms when the body’s core temperature is raised. 60-80% of MS patients report this phenomenon happening. The raise in body temperature doesn’t have to be extremely high, either; even just a half degree rise can cause exacerbation. For individuals who menstruate, ovulation can cause this flare up of symptoms.

Uhthoff's phenomenon, or syndrome, was discovered in 1890 by a German neuro-ophthalmologist who studied the worsening of MS symptoms in patients exercising who began having vision issues. (I’ll be talking about exercise with MS later, ‘cause, this research caused some serious repercussions)

It has since been discovered that Uhthoff’s phenomenon is triggered not by simply exercising, but the body’s temperature raising.

In the 1950’s, patients suspected of having MS were placed in a hot bath. If they had a worsening of neurological and/or vision symptoms, they were diagnosed with multiple sclerosis.

The best prevention is to be aware of potential triggers to keep core temperature from rising.

Triggers for me include:
- Exercising
- Hot showers/baths
- Living in Texas (hot & humid weather)
- Using a hairdryer on high heat close to the scalp
- Wearing pants when it’s hot AF

My symptoms that worsen include:
- Cluster headache onset
- Extremely bright light in my eyes
- Greying/monotone vision
- Nausea
- Loss of coordination
- Confusion
- Rapid heart beat
- Shaking/buzzing extremities
- Blacking out

It’s not that I don’t want to be outdoors and enjoy some time with folks, work, or perform. It’s a very real health hazard for me depending on the itinerary.

🎗️March is Multiple Sclerosis Awareness month. 🎗️ I was diagnosed in 2020 with Relapsing Remitting MS. This is a collection of journal entries and thoughts along my journey. 🖤

It’s not a might or a maybe, it’s been a thing this year. Although it’s been a bit lonely at times, learning I’m neurodivergent has really helped in my own self-discovery and boundaries. The tiny circle of genuine people in my corner has been far more empowering and supportive at this point in my life than any other. 🦊

Leg day today. Regretting my life choices and I’m not even at the gym yet 🫠

Today’s workout: https://hevy.com/routine/ujEiNmDRa3c

Hello..😊

A note to anyone who needs to hear it..

We don't "get over” or “move on” from our
trauma.. We are forced to make space for it.

We carry it. We learn to live with it, sometimes we thrive and smile in spite of it.

Happy Sunday I've done a bit too much today so tomorrow will be a rest day! Even having a conversation for over an hour has me wiped out! 😴

Hope today has been gentle for you 🧡

Idk who wrote this workout program today, but they need to be fired.

It was me.

I kicked my own ass. 🤡

Idk if I lifted a pickup truck, or it was logging the one I be carrying around behind me. 😌🍑

I usually have most, if not all in our household at any given time. When you’re low on spoons, there are still some convenient foods that still support your health goals! 🫶🏼

This is not a sarcastic post. This post is for those who either have very little time or simply do not want to cook. I don’t want to cook often so I feel ya!

Let’s start with the non starchy vegetables. You can do bagged salads (not pictured) or you can do canned veggies or frozen veggies. Get a cup or two of these in each meal if possible.

For easy protein, you can get frozen grilled chicken nuggets that just need microwaving, you can grab a rotisserie chicken that’s already cooked, you can also grab some Greek yogurt or cottage cheese. If you’re a plant based person, there are also frozen quorn and other types of protein that are easy to heat up quickly.

Carbs are pretty easy. Fruit is amazing. I like melons and berries but any and all of it is great. Oats are quick if you want too. I also like the quick microwave rice packets.

Fat is extremely easy. Can drizzle some extra virgin olive oil on your veggies or eat a few nuts or some avocado. Voila. You have some healthful food that doesn’t need much for preparation. ❤️❤️❤️

Love these designs!

Stealth Bros & Co

I am so, so, SO exhausted with my facial glitches (twitching and spasms) going on right now, particularly my eyes.

Usually they come for a week or two and go away for some time, but these specific issues have been going on closer to 2.5 months. There’s been a couple early mornings I couldn’t open one of my eyes because it felt like my eyelid was paralyzed.

Just another day in paradise with multiple sclerosis. 🙄

Avocado toast for breakfast ✅
Live session for my mentorship program this morning ✅
Semi-organized vendor supplies and product ✅

I have been working on getting into the swing of things after what feels like ages of being sick. One thing that I’ve been battling is the anxiety of feeling “behind”. It’s paralyzing. I become hyperfocused on avoiding anything and everything that it further throws me into a downward spiral.

Coming to terms that it isn’t easy to bounce back these days is difficult.

One of the conversations this morning in our break out room struck a cord with me. Myself and another coach touched on what it feels like to be hard on ourselves for not having the energy and stamina to keep up like we once could with chronic pain and illness. There’s a mental block that we are so focused on what we should be doing, versus meeting ourselves where we are at.

The previous week, another coach and I were role-playing using a real situation I’m going through and she held space for me to voice my struggle. When she responded, it was pure compassion toward my struggle validating the fact things have been difficult and I was doing the best with what tools I had.

It’s not always about trying to fix, but to connect and show empathy.

Grace.

We must give ourselves grace and the compassion we would if it were someone else.

If someone else were going through the same exact situation and feeling the same feelings, how would you respond to them?

Self compassion is a major component to our happiness and success. Without that, we stay stuck and unfulfilled.

I’ve been living that reality for so long. I thought it was normal to harshly criticize myself, demean, and use negative reinforcement to trick myself into what I wanted to achieve.

Fear has driven my experiences for so long. Putting down those behaviors and avoidance patterns has awakened something more meaningful.

I’m not perfect. I can work on accepting who I am and where I am at and growing from my experiences.

Authenticity.

Your Body Has Its Own Built-In Ozempic Popular weight-loss and diabetes drugs, such as Ozempic and Wegovy, target metabolic pathways that gut microbes and food molecules already play a key role in regulating

So happy to be around all my dance family this weekend! I didn’t have the spoons to do workshops and volunteer and vend like last year, so I appreciate everyone stopping by and saying hello. 🥰

I also want to give a shout out to Johnathon for becoming an active part of the bellydance community as a vendor and overall supporter. 🥹🥰

The Twisted Woodland
Migrations Belly Dance Festival & Artisan Market | Round Rock/Austin, TX

Found this account on Instagram and immediately felt less alone. Also, angry.

https://www.instagram.com/thingsdoctorssay
https://linktr.ee/thingsdoctorssay

"...stacking all these dopamine-triggering sources causes a crash afterward, ultimately undermining our longer-term motivation and continued drive..."

Tools to Manage Dopamine and Improve Motivation & Drive - Huberman Lab This newsletter will detail how to manage dopamine levels to enhance motivation.

Between this and migraines, sometimes I’m down for the count. 😫

I used to see great until optic neuritis.

What’s the best diet for MS? A quick search across any social media or search engine reveals tons of recommendations. I remember between my relapse and diagnosis going down this rabbit hole. Watching the documentaries. Diving into my nutrition coaching materials. Buying the specialty cookbooks. Eat this, don’t eat that, supplement with this, buy only alkaline water, it’s overwhelming.

For a population that is supposed to manage stress levels, what to eat and drink often becomes worrisome.

Truth is, there’s no specific diet that will work for every MS patient. We all have unique genetics, sensitivities, allergies, cultural backgrounds, taste buds, and in some cases, additional illnesses that create different dietary requirements and/or restrictions.

Minoring in Nutrition Science has also been an eye opening experience during my journey to further support that theory.

When debating a change in the daily food menu, consider:
- Maximizing whole foods
- Getting enough quality protein
- Incorporating lots of veggies
- Prioritizing high nutrient density
- Eating slowly
- Minimizing processed foods

Just as we go through changes adapting to our illness, we may go through multiple changes to our food choices to find what feels most in alignment with us. 🖤

You have the ability to face your tribulations (MS) with positivity, you may just need to work harder.