MS Warrior Series- Shana Stern

 

91D30570-DA66-474C-B02F-84D8A35B2622.jpeg

This weeks warrior is the amazingly talented artist, Shana Stern. She took the BS MS threw at her and made something (a lot of phenomenal art) out of it. But there’s more to her than her art,  check out Shana’s story below and find out what she wants us all to know and remember.  Just a forewarning, you’ll start using it as your own mantra. 

To find out more about Shana please find a link to here social media below and if you have some time (if not, MAKE SOME) check out her artwork. 

You won’t be disappointed. 

  How do you describe/introduce yourself? 

I’m Shana Stern, I’m 49 & I’ve had RRMS since 1999.   I live in Los Angeles with my teenage son.   Prior to being diagnosed with MS I was a working screenwriter, married & enjoyed an active social life – as well as an active physical life -where I took 2 dance classes a day, 6 days a week.  Now I’m almost a shut in & I’ve lost the majority of my friends & my marriage.  I had to give up dancing and writing years ago which was incredibly hard.  That being said, I’m very fortunate in that I discovered a way to still be creative – via painting with my fingers – which has been a life-saver for me over the past 5 years.

Does MS take a front seat or backseat in your life? 

Now this is a tricky, tricky question to answer!

On days I’ve slept well & I don’t wake up with debilitating fatigue – MS takes a major backseat.  When I can exercise & fix myself healthy food – I’m in the drivers seat.  Same with if the temperature isn’t too hot or too cold.  But – if I’ve been on social media too much or been reading too much – my vision begins to act up & I will lose my sight for a couple of days, then MS flips to the front seat.   If I get a cold, allergies or high stress, MS is firmly in the drivers seat because those things trigger more symptoms.

When it’s hot & humid, I get millions of pins & needles in my face.  When it’s too cold, I get severe bone & nerve pain.   Also if my pain levels from my many injuries are high – these all cause MS to at least become a backseat driver.

I’m a fairly classic case in terms of every single day is different than the last and there’s no way to predict or control it.  That’s what’s so insidious about MS.

What keeps you going?

I’m a full custody, single mum so my son is 100% of what keeps me going.  I’m not sure what the state of my existence would be without him.

Do you challenge your doctor or take their word as gospel?

This is my 20th year having MS so I think it’s safe to say I don’t take any doctor as the end-all-be-all of information. My neurologist is a highly highly respected MS doctor, but there’s absolutely times I know she doesn’t quite “get” what it’s like for me every day.   I don’t think anyone who doesn’t have MS can truly grasp it. And because MS affects everyone so differently – even other MS’ers won’t get what others experience.   There’s people who have had it for years and still run marathons and barely require any medications.  Then there’s people who have had it less than a year who suddenly find themselves in a wheelchair. I do still feel like I have to defend myself to my doctors – especially when it’s about medications.  Which is a shame but unfortunately comes with the territory.

I don’t know how typical my attitude is with doctors – because I’ve had many surgeries, a multitude of health issues and I’ve been in physical therapy 3x a week for 5 years now – so I’ve had to become my own advocate and this is something that I feel would greatly benefit other people with MS to learn how to do for themselves sooner rather than later.  If you feel you aren’t getting the best care or aren’t being heard – find a new doctor.  If you are concerned about a medication – do your own research. Learn how to read MRI’s so you aren’t dependent on one person’s interpretations.  Speak with others who share similar symptoms to you. It’s your body.  It’s your life.  So ultimately the decisions are yours.   What’s right for me won’t be the same as you and vice versa.   But I think by advocating for yourself, you also give yourself the gift of re-claiming some of your power back.

What do you want/wish people knew about you?

I wish people knew that this is not a choice for me.  I lead a good, clean, honest and healthy life prior to my diagnosis.  I don’t want to be sick.  I don’t get anything positive from it.  And the costs, both financial & emotional – have been extraordinary.  I’ve tried everything in my power to re-gain health.  I’ve tried every alternative therapy out there.  And I mean every one – including going out of the country for stem cell therapy.  Positive thinking cannot control or change my symptoms.  I don’t have cognitive issues because I’m “tired”.   My debilitating fatigue can’t be changed by having coffee or trying harder to get a good night of sleep.   My nerve pain isn’t “all in” my “head”.

I also wish people knew that suffering is relative – so I don’t want people thinking they can’t talk to me about their lives or their heath or injuries.  Pain is pain.  Suffering is suffering.  I want to be treated as anyone else is and I want to be able to be supportive and empathetic to what my friends go through – because I’m actually quite good at it!

I want people to know when I do discuss MS, I’m not trying to garner pity.

And I want people to remember I’m still alive.  Still here.  And that I still yearn for friendship, relationships & getting to go out and do things.

To learn more about Shana check out the links below:

Instagram 

Website 

MS Warrior Series- Sophie

409722D9-F3F2-41B3-9E2E-46C270955016

Meet Sophie, a woman who is #Goals. She lives abroad, and although she puts MS in the front seat her life, it is way more than it. Read below to find out more about Sophie, a woman after my own heart. 

                                   How do you describe yourself/ introduce yourself? 

Hi! My name’s Sophie and I have three homes – Sydney, Australia, Stockholm, Sweden and Yangon, Myanmar. I work in support of Myanmar’s peace and democratic transition, based in Sweden and with frequent and lengthy trips to Myanmar. I was born and raised in Sydney, Australia and I was diagnosed with highly active RRMS in September, 2017 at the age of 29.

 Does MS take a front seat or a backseat in your life? 

In terms of management, MS takes a front seat in my life because I think it’s my biggest chance at being able to keep doing what I love, whilst feeling well. Management includes following the OMS diet for me, even whilst traveling, exercising six times a week, sleeping 7 hours a night and stress management practices, such as meditation and yoga. It also includes six monthly infusions of Rituximab.

What keeps you going? 

My determination that this disease and all the symptoms it’s left me with are not going to stop me doing what I love.

Do you challenge your doctor or do you accept their word as gospel? 

Information is very comforting for me, so since day one I’ve had my head in medical journals, and my neurologists has been fantastic at meeting me during our conversations on the newest research and approaches. I was also diagnosed in Bangkok, Thailand and so have been lucky to have had the input of neurologists who treat patients without such a focus on drugs and a strong focus on lifestyle factors and meditation. I whole heartedly feel all decisions that have been made in my treatment course have been joint decisions and I’ve never agreed to any intervention unless I felt comfortable understanding that this was the best bet for me.

 What do you want people to know about you?

MS is a big part of my daily life and annual scheduling, but it’s just a part of my reality. The rest is far more interesting.

To find out more about this phenomenal woman follow her on instagram. See link below

Instagram 

 

MS Warrior Series – Catherine Weston

B34E778D-0539-4060-A7DF-F3EA8816DE27.jpeg

Meet Catherine Weston. Her blog, Chronically Hungry, which is a mixture of her life, wellness and cooking is not only useful but motivating- seriously run, don’t walk to see what I mean. She’s been featured on the MSConnection blog and continues to bring MS awareness everyday on her Instagram. Check out her interview below and be sure to follow this hilarious lady on her social media outlets listed below.

  How do you describe yourself? 

I always introduce myself as Catherine or Cat as its convenient, but I always describe myself as energetic and optimistic, and super dorky 🤓. MS hasn’t changed who I am much aside from making me a lot more disciplined with my health and expressing gratitude on the daily.

       Does MS take a front seat or a backseat in your life? 

MS kinda rides in the middle seat for me 😂 it’s always there and my social profile is 100% dedicated to living with it, but I don’t talk about it much in my life because most of the time it doesn’t affect me too bad (knock on wood)! I’ll walk a little weird or get a little tired but nothing I can’t handle yet, and always preparing for the day I may need to take other measures.                                                     

 What keeps you going? 

A mixture of myself and my own aspirations for my life, my family and loved ones, and this amazing MS community keep me going. Having others who understand what’s it’s like tell me that my story and experience have made their lives easier or eased their mind is always so worth sharing what I go through 🧡                           

Do you challenge your doctor or do you accept their word as gospel? 

50/50, my previous neuro was so esteemed in the medical community and a little full of himself so it was near impossible to challenge him or even get a word in. I only just established care with a new doctor so seeing how the relationship plays out, as of now I’m only seeing her once a year.                           

        What do you wish people knew about you?

I wish people who know me from social media specifically, could see me for more than my illness. Making this profile mainly about that of course led to that result, and I love it, but I feel almost defined by it. I never want to be defined by MS – I want to grow with her, nurture her, and understand her to the best of my ability as she lives inside of me (uninvited 🤣). I wish people could better understand that this is an every day fight, and even when I look okay or say I feel great I’m definitely tired. I am definitely having cog fog. I am definitely experiencing SOME kind of symptom, so I just want patience, understanding, and forgiveness of my shortcomings. ♥️

To learn more about Cat, or to follow her journey see the links below:

Instagram

Blog

 

 

 

MS Warrior Series Keyonna Renea

IMG_2889

      I started following Keyonna on Instagram a little over a year ago and I instantly loved her spirit and transparency about her MS journey. Her IG handle is Diagnosed.Determine for goodness sake! This self proclaimed uber passionate creative focuses on the beauty of others, and focuses her energy on reminding them of the strength and power they have inside. She is truly remarkable. Please read the interview below and be sure to follow this amazing Warrior on all of her social media outlets listed below.

 Enjoy! 


How do you describe yourself? 

I’m Keyonna Renea. Uber passionate Kansas City creative and event curator/organizer. I live to tell people’s stories and am often the glue of connection in many communities.

 Does MS take a front seat or a backseat in your life? 

Thiiiiisssss is such a weird question for me. I’m not sure how to answer except to say honestly I forget that “I have MS” until I remember lol. I live my life as optimistic as possible and take things day by day and sometimes moment by moment. I’m still trying to shape my new normal. It has a seat so to speak but it’s wherever I allow it to sit.

What keeps you going? 

Some days I have no clue lol. Steady progression to become my full self but to also share with others. Being stagnant is like a prison to me.

Do you challenge your doctor or do you accept their word as gospel? 

Challenge, challenge, challenge. I’m very curious and want to be educated every step of the way. All of my physicians to have be open and willing to take their time to have me as a patient because I need to know how and why everything works if there’s an answer to my questions or concerns. At the end of the day I know my body better than any book or data. I can’t walk into an office where the staff doesn’t want to be partners in my health care journey. I wasn’t always this way. Self advocacy is a habit I’ve had to learn over the years.

What do you want or  wish people knew about you?

I hear I’m a little mysterious which is odd because I consider myself to be an open book once you get to know me. I can come off very quiet and reserved at first but that’s because I’m listening…. I’ve always been a people watcher and student of human behavior. Don’t let any of that fool you tho I’m as silly as they come. I’ll talk about health, trauma, mental illness, happy hour, and dance a little all in the same conversation lol.

Also, I’m so passionate about health as a form of prevention rather than reacting to a diagnosis. On the flip side I exploring opportunities that will change the way we approach life after a diagnosis and the conversations around things that are mostly experienced in silence.

For more on the fabulous, vibrant and strong Keyona Renea follow her on the platforms below:

Website

Instagram

Facebook