Friday, January 28, 2022

How To Get Access to the 1st Class of the Adaptive Stretching Sparkle Session

 Hi!


Last week I had the first adaptive stretching class and it was so fun! We did a live version and then I recorded the same class so that all those that couldnt make it could access it.  

And it's available to use over and over again!


 

To get access to the class, I am asking for a $10 good will offering.  How to gift that is below.  Once received, I will follow up with the link to the video.


Stay tuned for more classes!!


To gift:


Venmo: @Eliz-Martin-27

Amazon gift card: link here.  Email: elizmartin001@gmail.com

Starbucks gift card: link here.  Email: elizmartin001@gmail.com

Saturday, January 22, 2022

Adaptive Stretching - Sparkling Style

 



Adaptive stretching - Sparkling Style!!!!

Yay!

Wednesday January 26th at 10am I will be hosting an adaptive stretching session*. 

(How to sign up is below!)

This will be a time in which I share some of my favorite seated or laying down stretches, all adaptive style!

If you cannot make this time but are still interested, you can still sign up and I will send you the private class link after it’s completed.

Everyone who signs up will receive the recorded class, to re-use and craft your own stretch sessions!!

I will be trying to keep it to 20-30 minutes. This will be a more instructive class. I will be showing modifications to most all stretches, to meet everyone where they are at.

I will have future flow classes where we get really in to the stretches.

If you have any questions, please feel free to email me at thesparkledlifegirl@gmail.com. Or send me a dm on Instagram!

Ok to sign up, there is $10 good will offering. You can do this via venmo, PayPal, an Amazon giftcard, or a Starbucks giftcard (we’re getting creative over here lol). All that info is below. 

Please include your instagram name so I can share with you the info via instagram!

After you share the good will offering, I will be in touch with the zoom link.  And then I will follow up after the class with the recorded version. 

Yay, lets get stretching! Excited to stretch with you!

Good will offering

Venmo: @Eliz-Martin-27
Paypal: elizmartin001@gmail.com
Amazon Giftcard: link here.  Email: elizmartin001@gmail.com 
Starbucks Giftcard: link here.  Email: elizmartin001@gmail.com

*I am not a professional. discuss with your doctor before pursing anything new that might affect you. i have been actively stretching for 10 years so I do feel like I can bring a lot of knowledge to this area but it’s all civilian patient knowledge. please take the proper precautions as needed for you! ❤️

Monday, November 22, 2021

The Sparkled Life - Holiday Gift Guide

omg I havent used this blogger platform in FOREVER.  feels like old times.  so cute.  holiday gift guide...let's do this.


if you're anything like me, the holiday gift season is the most opportune time to ask for all those "adaptive and sick and fabulous tools" that just dont make it in to the budget during the year.  so many people will ask "where did you get this fun tool?", to which I very kid like respond: "SANTA!". 


but for real, whether you're building a list to give to santa for yourself, or looking for gifts for a sick and fabulous loved one, below are a few tried and true fabulous gifts that I'd highly recommend. 



the amazon holiday gift guide 

the bike, the ice roller, the LOVED BY EVERYONE ICE PACK, you cant go wrong with anything on this list.  

everything on this list I own, have used for years, and are worth the investment.  I included the shower wipes because theyre actually (not surprisingly) the most popular item in the community.  literally, theyre amazing.  dont skimp on them!




just the comfys holiday list

bombas socks.  the little compression in the regular socks feels like a hug on your feet.  its gentle and rewarding. 

if you want something more compression-y, highly suggest their compression socks.  I wear them almost daily.

SOMA!!! omg there isnt another brand I love more.  

their cool nights pjs are amazing all year long - theyll keep the night sweats away while also keeping your body temperature regulated.  they are the only brand Ill wear to bed.

the bra - i know a bra for the holidays really? yes, really.  its the perfect bralette - its comfortable, easy to put on (key!!!), and attractive.  I own more pairs that I should admit.  theyre truly amazing.




the small business guide

(I know I probably forgot some good ones but these are my 5 go tos I use almost daily)

koldtec - the wearable ice pack.  it's a classic.

the embr wave - who doesnt know temperature regulating technology? the cold feels like an ice cube to the wrist and the warm (my favorite of the two) feels like warming your hands by a heater/fire.  

releaf pack - they're cute, they mold to what hurts, and they stay freaking cold. I sleep on these (legit, under my head) every night.

yuyu bottle - i have two of these, the hot water bottle and the sport ice bottle.  damn, I just love them.  the hot water bottle stays warm for 5-6 hours and is much safer than a heating pad! the sport ice bottle - again, another thing I sleep with every night.  I keep it in bed by my feet just in case they are burning.  it stays cold throughout the night.  its amazing. 




the extras

things you cannot go wrong with when buying for your sick and fabulous friends: the gift of convenience.  I use both shipt and instacart every week. you can gift someone a subscription for a year of free delivery.  let your loved ones stay home away from germs and do all the shopping from the convenience of their phone.  

Instacart referral link:

Shipt referral link:


and then of course, any starbucks giftcards, delivery.com, grubhub...they may seem basic but any reason to just order something instead of having to make it is a little miracle to us.  really.


thank you for reading all these! here's hoping for a lovely holiday seasons!


Thursday, November 19, 2020

the new new



a note: as you read this, the journey may seem very strategic, point a to point b, very effortlessly.  it may seem like it just flows. looking back, that is how this all pretty much went.  God knew I needed this journey to go with as little stress as possible, even in a pandemic, and allowed it to just be.  I'm forever grateful for that. 



It’s taken me almost a year to be able to write this. 

For  months, when I sat down to even put any thoughts to paper, it came out like this:

Fuckity fuck fuck fuck.

Sorry mom. (:

But thankfully, time does heal some wounds. And so does knowledge. And processing. And letting go. So, yes, I’m in a better place to be able to write about what has happened over the past year now. Still stings though. 

Before I dive in, I want to just chat about the 8 years prior to this year. You know, the 8 years I was wrongfully diagnosed with Multiple Sclerosis. 

The diagnostic tools for MS are actually quite limited - diagnosis is based off of MRI images, scale of symptoms (EDS), and sometimes, a spinal tap. 

The difficult part of this is that the signals of a diagnosis of MS (lesions on the brain/neck/spine seen on an MRI, certain symptoms that align with the EDS scale, and bands present on a spinal tap) could all perhaps signify a different disease other than MS. Misdiagnosis in the MS world is actually quite prominent, not largely, but seen. However, MS is the “easy” answer. It’s also the most probable answer. So it’s usually what doctors go to first. 

For me, I was immediately diagnosed with MS after a MRI showed lesions (lesions are demyelination of the myelin sheath, which is the protective covering of your nerves, within your central nervous system) on my brain, neck and spine. This was March 21 2012. It was a quick diagnosis because, in the words of the ER neurologist, it was so “obvious”. 


march 21 2012

But then I got worse. Not like a little worse but a lot worse. Additional neurologists looked at my case and said, “well, we still think it’s MS but perhaps it’s just a more progressive, atypical case. Perhaps there’s even another factor we aren’t seeing.” But the MS diagnosis never left. It stuck like glue. 


For the first 3-4 years, I searched for answers. Why was my case atypical? Why did I not respond to any medication or steroids? Why did my MRI’s not show additional developments? Why do I not show signs of inflammation? I went to Cleveland Clinic, Mayo Clinic, various doctors in Pittsburgh, all with hope that they’d hold the key. And they tried. They’d examine me, look over my case, and say with great assertion “we think it's THIS!”. And then they’d do follow up tests, it would turn out to not be their big idea, their ego would get in the way, and they’d either dismiss me as a patient, send me back to pittsburgh for follow up, or worse, gaslight me in to thinking it was all in my head (looking at you Mayo Clinic you son of a bitch). 

Eventually I had to give up. Not on my health but on my journey to “find the answer”. At this point I had been tested for numerous other potentials, all coming back negative. The only one that sort of stuck was Parkinson’s disease; we dont know why, we dont know how, but even to this day I am still on Parkinson’s drugs that truly do make me more functional. 

So, I give up. What this mostly means is I stopped visiting additional hospitals, as well as I stopped all disease drug management. This was a battle as every MS specialist wants their client on drugs and I had to fight to say no. I pursued IVIG and plasmapheresis still but these were for reasons outside of MS. I saw my MS specialist every three months, went for MRI's, and monthly bloodwork.  I basically just let the diagnosis be what it was and focus on symptom management.

There are three points here I’d like to make, though I touched on them briefly. 

What exactly led neurologists to distrust the MS diagnosis?


1. My MRI’s. They remained “stable”. But my progression didnt. This led some to believe that I had progressed to SPMS. This led other’s to believe that perhaps this demyelination was not MS related.  Even further, it was possibly believed that the damage being done couldnt be seen with a MRI.  (A doctor explained a MRI like this and I thought it was so insightful - a MRI shows the central nervous systeml like a space ship shows earth.  The space ship can see "damage", such as a hurricane brewing, just like a MRI can show lesion spots or demylination.  But a space ship picture cant really show the damage on the earth's ground, such as flooding or structural damage.  And it's believed that perhaps MRI's cant fully either.)


2. MS disease management drugs. I did not respond to any drugs. T cell or B cell facing, it didnt matter. They did nothing. 


3, Inflammation. MS is in most cases an autoimmune disease, causing inflammation. My body never showed instances of inflammation, at least not to the level of what is the norm for a ms patient. 

This is putting it minimally while summarizing.  But I share because as crazy as it is to receive a different diagnosis, we kind of knew this was a possibility all along.  The only frustrating thing is it took 8 years. 

So all this brings us to November 21 2019. My birthday in fact. I woke up that day not feeling fabulous, and by afternoon, I looked to kris, who was working from home that day, and told him I had to lie down, I was just wrecked. 

When I woke up my mobility and my speech were limited. Over the course of the next week they both completely disappeared. 

This had happened before, this loss of mobility and speech (called dysarthria). However, this felt different. And the speech - well I always had something, at least a little. This time I was completely nonverbal. 

We met with my MS specialist - we went through my case, my newest MRI, my symptoms. I left that day feeling how I always felt leaving that office - underwhelmed, like I had just done a turnaround and nothing else. 

We had decided to do a round of plasmapheresis; when Kris called to schedule, the plasma nurse actually informed us that my case was being presented to a panel of doctors to discuss what’s up. 

And apparently that’s what happened. My MS doctor presented my case to a panel of doctors from all walks of specialities. At the end it was suggested that I get genetic testing; specifically, genetic ataxia testing. 



because my veins are so wrecked, I had to get a cathater through my neck (that went to an arteria near my heart) for the plasmpaheresis treatments.  it was so sexy.  

also, I'd like to just note that all this happened between thanksgiving and christmas.  it truly was a holiday time to remember.  I thankfully got the pain in the neck removed a few days for Christmas and was able to get my hair washed.  I know it seems so simple but damn, that was probably the best hair washing in years lol.


Personally, I think that everyone should have access to their genetic make-up. It’s who you are, it’s how you were made. And for the most part it cant be changed - it is what it is. But for some reason, genetic testing is very touchy. Also very hard to get access to. 

Even with this recommendation and referral, it took an additional 6 weeks to get an appointment. I had to go through genetic counseling. And then I was told that it could be upwards to 12 weeks to get approval for genetic testing. Approval, not the actual test. Unless, (and this is really the game of all healthcare right here), we paid out of pocket. Those son’s of bitches, right up there with Mayo Clinic. 

So we went the out of pocket option. Not because we have money to just throw at medical tests (lol that’s cute) but because I was SO SICK and this had the potential of having answers, and more importantly, symptom help. 

I’m in a wheelchair unable to speak at this point. We were desperate. 

I spit a lot in a tube and out the door to the lab it went, along with a lot of money. 

At the same time as this, I had an advocacy video shoot with a company I was working with; the topic was patients with progressive MS. I asked my doctors - can I do this? Not physically, all the right adaptions were being made for me to be able to do this. But in the right, with knowing this test was out there. 

I was reassured, that the test, even if it did come back with genetic ataxia, it would just be an additional diagnosis.  Or possibly the test would just be confirming something in the MS family that is atypical. Either way, the MS diagnosis would still be stuck to me. 

Life is funny.

Timing wise it’s important to note that we’re coming up on Covid19. This impacts this story because, well, every diagnostic research lab in the country switched most of their efforts to Covid19, delaying all other tests. 

I could get really snarky here on Covid19 measures and how people need to be taking the right precautions to rid the disease here in the USA because it’s affecting SO MANY SICK PEOPLE but I’ll spare you. Just stay home and wear a mask. Please. 

On a Friday a while later I get a call. It’s from the genetic doctor. “Eliz, we got your tests back. It’s remarkable. Ok, we didnt find anything that had to do with genetic ataxia, or really anything to do with MS. But rather we found a marker of a mutation that has never been reported before. Can you believe that? You have a genetic mutation that has never been clinically reported! It is in this special family of GFAP protein mutations, which is indicative of a disease called Alexander’s disease. But it’s so very rare, and then you having your own mutation...anyway, we need to do additional testing. We dont know anything for sure. Stay tight, dont google/worry too much. And dont get covid. Ok talk soon”.

Ok cool.  Will just keeping living. 

A while goes by. Another call “Hi Eliz. Ok, we got the further tests back. We can confirm you have a GFAP mutation, indicative of the disease Alexander’s Disease. It aligns with your symptoms as well. This is very, very rare. Like, research paper rare. I’m very sorry. I’ve been in contact with a team of Alexander’s Disease research doctors, fortunately they are located in Philly! They’ll be in touch and they’ll hopefully be able to help you with any answers. Again, I’m very sorry. Dont get covid. Bye”. 

I stared at Kris, almost wanting to laugh. You’ve got to be kidding right? Where's the prank?

Alexander’s disease is a leukodystrophy disease. It is an extremely rare, progressive, neurological disease. It is caused by a genetic mutation of a GFAP protein; it affects the myelin sheath of the central nervous system (sound familiar?). There are no drugs or treatments available and relief is usually symptomatic. And, it’s fatal. I know that’s not a cute thing to say. Also, I know that every one dies. (Someone actually said that to me when I shared with them the burden of knowing your disease is fatal - “well Eliz, every one dies”.) But I will admit it is hard to stand up to the monster ruining your body when you know it will eventually “win” in the end. 

When they say Alexander’s Disease is rare, they mean about 500 some cases since it’s discovery in the 1970’s. Worldwide. Like a hell of a rare disease. 

If you'd like to read more on Alexander's Disease, I suggest this website. 

So what does this mean for MS?  Well, it means we're 99% sure that's not the correct diagnosis.  I've asked my speciliasts now, that if they saw my case and evaluated me back then, would they have diagnosed me with MS?  In true doctor style, they were not able to give a complete yes or no because, well, they have the insight to know about this genetic mutation.  A genetic mutation that completely changes the story.  But, they did say that MS was the most obvious diagnosis...to begin with.  It just shouldnt have taken 8 years to realize that MS didnt make sense after a while.

Ok but what does this genetic mutation mean?  Again, little is known but here's what has been explained to me.  I was born with this genetic mutation.  Alexander's Disease has three presentations - birth, juvinille, and adult.  At some point, in my "adult" years, something triggered.  They do not know the triggering points to this GFAP genetic mutation - like zero info on it.  All they know is at some point, something triggers this mutation.  The GFAP mutation then creates an abnormal amount of Rosenthal fibers, which is a type of protein in the bodies' makeup. On top of the abnormal amounts of Rosenthal fibers, there is demylination to the myelin sheath.  How these are connected, they arent 100% sure.  But both happen. 

The demyelination of the myelin sheath is what causes the symptoms I am experiencing.  This is why many of my symptoms align with MS because, they are both from damages of the central nervous system, neurological disabilities.

This was a lot to take in. First there is the level that for 8 years I was given the wrong advice, the wrong drugs, the wrong direction. And now, I know the truth and honestly I kind of wish I didnt. And what do I even really know?  It's like I know everything and nothing at the same time. 

We’re in quarantine time, so my first introduction to the Alexander’s Team is a telemedicine appointment. We go over my 8 years of health journey, my MRI’s, the genetic testing, the thoughts, the additional questions. It was all very routine. But one thing that stood out was that the doctors mentioned, just in a passing comment, something about me living to the age of 50. I almost cried. Since learning this news the word “fatal” had me questioning when. How long? To be passively told that they planned on seeing me in 15 years still, gave me hope. 

Because Alexander’s Disease is so rare, and because the genetic mutation I have has never clinically been reported, there’s a lot of gray area still. I’ve gone through as much testing the last 5 months as the prior 8 years combined. It’s crazy. On top of which, this team finds me “intriguing”. It’s a blessing and a curse - a blessing in that I know I wont get lost on their deck to paperwork. A curse in that I sort of feel like a lab rat. 

But they’ve all been kind and gentle. I’ve had additional telemedicine appointments and a few in person appointment’s. There is a whole team of top doctor's who have discussed me as a patient; they are highly invested.  For the first time in these 8 plus years, I feel I’m being taken seriously.

Since there are no treatments available, the main goal is to help the patient with symptom management. This has been difficult in these times because I dont have access to a lot of what I need. However, I am happy to report that while I’m still in a wheelchair, I have been able to cycle on a recumbent bike (both stationary and road) like a badass this year. My speech has also improved some and I am able to speak, dysfunctionally, and yet, be understood (sometimes lol)!




Where we go from here is a lot of the same expressed above - tests, discussions, lab ratting. We know the monster that’s doing this but we cant really fight him. But we can best prep my body to take on the heat. 

And even though the diagnosis has changed, the symptoms are the same. I know how to adapt life to them. Of course, there’s knowledge now that these symptoms are most likely here to stay. And that the symptoms will only progress. It’s a downhill ride so to speak. 

I’m going to be very straight forward here for a moment so there’s no confusion. This change of diagnosis is not a good thing. As terrible as MS is, there are bouts of hope in the disease. Of remission. Of drugs helping. Of research. Not belittling the course of the MS disease - it is terrible. Awful. Ugly. 

But Alexander’s Disease, well, let’s just say it just got worse. There is no real hope, there are no drugs. There is little research. Especially now, as all research has been stalled due to budget cuts and restraints. (Stay home, wear your mask). 

This outcome is honestly like the rarest and, to be blunt, in some ways, the worst case scenario of having the genetic testing done. That’s the real of it. Sorry if that makes you uncomfortable but that’s the truth. 

The positive though is I have been able to donate my "case" to varoius research facilities in the hopes of answers for future generations.  My genetics, my blood, my cerebrospinal fluid, has all been gathered and is on ice as they say.  I know I dont have many answers now - but I hope that in my particpation, some might in the future.


If I can be so bold and share just this one last thought - life goes on. This all happened during a pandemic. While my world was falling to pieces, the whole world was falling to pieces. The world continued moving on and I had to continue moving with it. I couldnt go visit friends or be comforted by my mom’s hug when I found out this news. No meal train or extra help was offered because honestly, we were all struggling.  I had to stay inside just like all of you. And that gave me power - because I literally had to go through it to get to the other side. 

We all get hit by hard things in life. And life continues to keep moving. We have to find the balance of honoring our feelings and what we’re enduring while also respecting the world’s going on’s. By taking the time to find this balance, I found my own hope. I found peace. I even found joy and laughter and happiness. 

And that will only continue. Because life is still good.

Id like to just give a little love shoutout here to my babes, Kris.  First, I'm a very difficult patient.  I like to do everything myself.  And Im very stubborn in this.  It can be very frustrating to be a partner to someone like this. (: Second, he was working from home in our tiny 900 square foot apartment with me and Sputnik bothering him all day because that's what we do.  Third, he had to not only watch his love go through the physical changes of this past year, but the emotional and mental ones too.  Fourth, he himself had to endure the changes and news.  I could go on and on with all that he has had to go through.  And yet he handled it like a boss.  I'm so thankful I have a life partner who literally is there during all the tears and the cheers.  Love you babe. 





Wednesday, November 18, 2020

What Mindfullness Means to Me - Jenna Green



Welcome to a guest post from my good friend Jenna Green on mindfulness. You can find Jenna on instagram here. Thank you Jenna!





Mindfulness is one of those chronic illness or ‘spoonie’ superpowers that I think we don’t often realize we even possess. As humans, we are default programmed to take the easiest route. When you walk into the room, you don’t do circles around the table to get to the couch, right? No, of course not. You go straight to it.


When you’re diagnosed with a life altering illness, you start to subconsciously adjust pieces of your daily life to make things easier on yourself. For example, I just moved and I bought a new circular coffee table (because less chance of bruising when I bump into it, of course). But I also do smaller things, like combining a trip to the kitchen trash with refilling my water bottle (when I remember) to minimize how much I have to get up when I’m in pain. 


I find that I’m not even usually ‘mindful’ of what I do to make things easier/better for my body/life each day, but when I tune into it, I am really surprised at how much I can adapt. 


Guess what? We can adapt our mindset or internal dialogue in a mindful way too, and for me, that has been both the biggest challenge and the biggest reward of mindfulness. When we tune +into what we are saying to ourselves, without judgement or guilt, we can learn a lot. If you’re up to the challenge, I want you to write down or just list in your head, 3 things you said to yourself today that you’d like to be more mindful of and turn into kinder thoughts . Here are mine:


1- OMG why didn’t I bring the water bottle with me when I went into the kitchen, I’m ridiculous! 

2- Seriously I can’t believe I forgot to write back to that text, I’m such a jerk.

3- I’m so stupid for not stretching last night now I’m paying for it. 


So these aren’t the meanest things I could be saying to myself (I’ve made some great strides on working on my self-talk and self-love!), but they aren’t the nicest either. Just as Eliz and Heather said, mindfulness doesn’t come easy, it’s a practice. For me, recognizing how resilient and adaptable I am with things out of my control has helped me to recognize that I can also change the things that are within my control. Being present in my own thoughts, and correcting them with kinder ones without judgement, is where mindfulness has made the biggest positive impact for me. Here are three ways I would correct the above thoughts:


1- I wish I had remembered my water bottle, but I’ll try to be more mindful next time I get up.

2- I thought I wrote back, I’ll explain to Sarah that I made a mistake and I know she’ll understand because I’m human.

3- I didn’t prioritize stretching last night so I’m going to prioritize it now so I can get some relief. 


We’ve all got a LOT of ‘ugh’ going on this year especially, so why are we adding to the negativity and being our own worst critics? Now, more than ever, I hope you’ll take a minute to be mindful of how you speak to yourself and show yourself some kindness. When in doubt, I try to talk to myself like I talk to my dog Dixie... who is always the best/cutest/sweetest/smartest girl in the world (even when she’se kind of a sassy pain in the butt!).

Wednesday, November 11, 2020

What Mindfullness Means to Me - Heather Tomko



My good friend Heather Tomko, over on instagram @theheatherreport, graciously shared what mindfulness means to her. And what she does to pracitce it. Thanks for sharing Heather (also check out her insta, it's so cute and full of knowledge!).




I’ve always been a planner and a control freak. A lot of times, my mind feels like it’s racing, thinking ahead to what I have going on in the next hour, the next day, the next week, the next month. I’m thinking about the outstanding things on my to-do list, the next meeting I have, the next trip that I’m going on. My mind struggles to be a place of stillness.

And then COVID hit. Suddenly, the frenetic pace of both my mind and my life basically came to a standstill. I had a lot less going on, but that didn’t mean that my mind slowed accordingly. In fact, it was largely the opposite. It felt like I was so filled with anxiety all the time, worrying about COVID and my health and what the immediate future was going to look like. My chest felt heavy with the stress (which, ironically, just made me more worried – was that a sign of anxiety, or of COVID?).

Very quickly, it became clear to me that something needed to change. It wasn’t healthy for me to continue the way that I was living, especially as it became apparent that COVID wasn’t going anywhere soon. So I began, slowly but surely, to work on changing my mindset.

Instead of spending time thinking about the coming days and weeks, I really focused on thinking about the present. While there were lots of things that I wanted to be doing but couldn’t, I chose to focus on the small things that brought me happiness each day. For me, mindfulness became a practice of gratitude. Reading a book outside on a beautiful, sunny day, making the perfect cappuccino, or snuggling in bed with my dog – I focused on the joy that each of these small moments brought me. I was present in those moments of happiness, rather than zoning out and thinking about a future (hypothetical) moment.

Mindfullness is still not something that comes easily to me – it is something that I work at, constantly. But without it, I don’t think I could have gotten through these past six (plus!) months.

Monday, June 8, 2020

Black People and MS - an interview of learning with Myelin and Melanin Podcast Ladies

this is Eliz. I must offer an apology. I chatted with Dawn and Daana about this subject back in late February, early March. Just as I went to go to share, Covid19 was peaking, and I was starting to advance in my own health journey. So I asked Dawn and Daana if we could pause on release. And then honestly, I forgot about it. Till recent events of racial justice started to have to learn and question again. And then it was like, OMG!! Dawn and Daana! Their insight!! To me, it was just putting off an interview. But what I was putting off was the dignity that is owed to these two beautiful Black ladies' story and MS journeys and their work within this space. They live this life every day - there is no "putting it off" for them. Dawn and Daana, I'm sorry I didnt see that till now. To all my other social media Black friends, I'm sorry I didnt share this sooner. I promise to continue to learn and evolve my perspective. Much love, Eliz




So to start, Dawn, Daana, would you mind telling us a little about your MS health journey?

Dawn: I was diagnosed at the age of 25 with RRMS May 23rd, 2000. My initial symptoms were extreme fatigue, numbness & tingling in my extremities, muscle weakness, Lehermitte’s Sign (electric shock sensation that some MS patients experience when lowering their chin to their chest), and my right leg would constantly drag as I walked.

No one in my family has MS or had a major illness so naturally it was a complete shock when everything began happening. For about 9 years it seemed as if MS remained quiet. Some days I would even ask myself, do I really have this disease? In 2009 after a tremendous amount of stress, I had an exacerbation that completely turned my life upside down. The course of my illness woke me up, if you will and was no longer quiet. It pretty much laughed at me then said I’m here to stay.

Daana: I was diagnosed with RRMS in 2004; my presenting symptom was optic neuritis. I was relatively asymptomatic for about 10 years, but stress and life took a dramatic turn for me.

From there, some of my physical symptoms progressed quite a bit. I walked unassisted until about 2014, and now use a wheelchair full-time. I only bring this up, because people are obsessed with mobility and ambulatory status. It's kind of gross, but…

A side note -- my mother has MS and her sister, my aunt, does as well. My DMTs have ranged from Avonex to Tysabri to LEMTRADA, and now, Ocrevus.

How did you two meet and decide to do your podcast “myelin&melanin”?

We met online! My neurologist and I were discussing a new medication (LEMTRADA). She recommended I join the Lem Facebook group to familiarize myself with others and speak with them about this newer therapy. I believe she noticed the look of terror on my face, which is why she placed emphasis on joining.

I’m glad that I did because Daana and I probably would never know one another. This was my round one, year one LEMTRADA journey (Daana’s year two).

Honestly, I was so reluctant, angry, & scared about this DMT. I would stay up late reading various posts, and I would see Daana’s comments quite a bit. I thought, ok here is a woman that is very similar to me! She’s witty and isn’t afraid to say what’s on her mind! I think there were several posts we commented on and I knew that we were a mini tribe inside of a larger one. I was unaware that she and I were individually documenting our journey.

Then one day I said in an email, “HEY let’s start a podcast.” Daana answered with reluctance and pretty much said, “no I’m NOT ready or interested at the moment.” I understood because when we initially began chatting she asked me not to say anything about MS on her personal page. I respected that and backed away for a year. In late 2017, Daana said, “ok I’m ready”.

As a Black person newly diagnosed with MS, could you find someone who “looked like you”, something we ALL crave? How did that make you feel? Where most is this issue lacking?

Great question! No, I did not see anyone that looked like me when I was diagnosed. The only people I noticed were Richard Pryor and Montel Williams. Two black men that seemed far removed from the things I faced. The lack of representation made me feel terribly lonely. Of course no one intentionally set out to isolate this young black girl with MS, however, this is exactly how I felt.

Eventually I joined an MS Society support group and met women that “looked like me” but were older and further along in their disease. But again, this was 2000; the method of communicating was quite different. Being able to connect with others in my age group seemed like a dream. Honestly, I didn’t meet a black woman in my age group until two years after my diagnosis.

Dawn and I were diagnosed with MS a long time ago (in the age of ABC drugs) -- way before social media really became "a thing". That being said, there was essentially no Black representation of people with MS. There was Richard Pryor (who wasn't really visible in the MS community) and then we have "the default" -- Montel Williams (that's another story; I think the lack of representation especially as it relates to black men with MS is what inspired us to do our "Beyond Montel: Black Men and MS" series last season 2). So no, there was no place that you could really look and find people who look like us with MS community. Especially as Black women in our early 20s.

While representation is still severely and painfully limited I think the representation of Black people that we do see are people who are relatively new and their diagnoses, and whose diseases are relatively quiet. That can be problematic, because it silences the voices of people who have stories that might be scary or not is palatable to people. We need to be acknowledging the stories of all Black people with MS -- not just people who make you less fearful of the disease. We all have stories to tell. Our lives are just as dope.

Can you speak on the discrepancies in research for Black Persons with MS?
We talked a little bit about this with Dr. Mitzi Joi Williams in episode 49 of our podcast, but I think it's really important to focus on research specifically relating to African-Americans, as we're the demographic being diagnosed at the highest rate, proportionally here in the US. But, it's also important that researchers acknowledge the fact that Black people in the United States have a very precarious and complicated history with the medical profession as it relates to research; this needs to be acknowledged. This may play a part in influencing participation. We had a really interesting conversation with Lauren and Victoria from "We Are Ill" about this issue in Episode 62 of our podcast (which starts streaming at the end of this month).



go listen to their podcast!!! found here: http://myelinandmelanin.com/podcast/


What needs to happen for the future to be more inclusive? Where/how do we start?
In order for the MS community, or for the future to be more inclusive, I think it is important for people to consciously seek out stories that are more diverse. We live in a euro normative society so it's important that we are intentional about the stories that we seek out.

People should not avoid listening to stories that might make them feel uncomfortable. Whether it be people who have different life experiences, people who look different, or people at a level of disability than you -- levels that makes you uncomfortable. It important to listen to all stories.

I think that it is important to be aware the fact that Black people are not a monolith. A lot of time, the representation that we do see is very limited. It's important that we acknowledge, represent and amplify the stories of Black people at all stages of MS -- people who symptoms are invisible all the way to people whose symptoms can no longer be hidden (which can elicit fear, and that are not palatable to some people). We all have stories to tell. Our stories are dope.

What's 3 things that MS Organizations, such as the NMSS, can do to help this issue in the community?
First, I think it's important to have open honest and frank discussions about race, racism, and representation--no matter how uncomfortable that might make people.

Secondly, I think that organizations need to be conscious about avoiding tokenism. Lately in the "inclusive" (albeit limited) MS literature/marketing, we see the same Black faces. They almost serve as tokens in the Black MS community; that's problematic. Organizations need to be more intentional about seeking out different people (within the MS community) dealing with MS. Especially people whose stories might be complicated and complex (not just the newly diagnosed with invisible symptoms). Black people with MS are not a monolith.

Additionally, we feel that in order to better understand our point of view, collaborative efforts should be put in place. Being able to communicate our efforts on this journey, accomplishments, and personal stories are equally as important to the community. Continuous open dialogue (with a diverse group of Black MSers) would certainly open the door and provide a pathway towards inclusion. Also, Black MS does not begin and end in February (Black history month) – our stories should be amplified ALL YEAR.

What is something that people with MS should take away from all this?
We appreciate having this conversation, and feel there are many positive takeaways that will come from this conversation.

It’s important that MS organizations along with the community collaborate with Black voices that are often unheard. Also, actively seeking out the stories of black people with MS is beneficial to the community. It brings us together and displays a united front. We are in this fight and we too, which brings us to our final takeaway; inclusion.



You can follow Dawn and Daana on instagram @myelinemelanin and their webpage is: http://myelinandmelanin.com/podcast/