My journey with MS Parts 1, 2, 3 - Going Rogue in Guatemala

New Podcast!

Diagnosed in 2001, it’s been awhile. Remembering how it came about in Guatemala and what I went through reminds me of how far I have come.

Thank you Jessie Ace and @DISabledtoENabled for hosting me on their podcast. Jessie Ace is amazing and lives with MS. She’s a bright light in this world and I feel blessed to be a part of her program.


“Twenty years ago couldn’t walk or see unassisted. Today she is thriving and helping thousands of people with MS learn to thrive too. Her award-winning blog (Girl with MS) shares tips and tricks that she’s picked up as a certified life coach, motivational speaker, health journalist, and MS advocate. Years of studying alternative and holistic nutrition and lifestyle skills have given this Girl with MS a chance at life again.

ENabled warriors, please help me in welcoming to the show the amazing… “




Caroline Craven
GirlWithMS.com

Monday
: We chat about her Multiple Sclerosis Diagnosis, how it happened, and what medications she takes for it.

Wednesday: We chat about how she started a blog that helps so many people(and how Facebook shut down all her pages overnight!)

Friday: Find out Carolines answers to the not-so-super-quick secrets round - find out about her hilarious Halloween costumes!

 

Want to WIN a copy of Jessie’s  best selling ENabled Warrior Symptom Tracker? 


Jessie’s book is called the ENabled Warrior Symptom Tracker Book. The book helps people with chronic illnesses to manage and track their symptoms, allows them to instantly spot triggers, and allows for accurate notes to be recorded and given to doctors. 

It contains:
  • Monthly Calendars
  • Appointment Diaries
  • Menstrual Tracker
  • Exercise
  • Goal setting
  • Daily sheets for positivity and growth
  • Food and hydration diaries
  • Medication/supplement tracker
  • Treatment tracker 
  • Medical quick notes for easy reference in appointments
  • And a 1 and 3 month graphs to record information on for your doctors.
There is also a bundle included with the book too which includes an ebook on how to remember everything, cheatsheets for how to get more time in your day, bookmarks to allow you to mark the pages, 'I AM' positive statement cards, in-depth symptom, and pain tracker sheets and extra graph sheets for easy use.  

Enter the giveaway by going to www.mybookgiveaway.com to enter your details in Facebook messenger (lookout for a link that will pop up!) 


Or if you’re impatient (like me) and want yours now, Claim your discounted book from www.enabledwarriors.org/st

-------
* B O O K  C L U B *
This week's book:
Lance Armstrong - It's not about the bike. 
Get your copy here: https://amzn.to/3k69GHb

Stay #ENabled and #takeTHATms! 

P.s. It's not the cards we're dealt that matters, it's how we play the game that counts ;) 
 
 
 
 
 

Losing Touch, Finding Intimacy - repost from NY Times

Elizabeth Jameson, living with MS, wrote this most beautiful account of finding intamcy.  With her permission we are reposting to share with as many people as possible.  Thank you for helping us spread the word!    This is a REPRINT of NY Times Opinon with permission.

  
DISABILITY

Losing Touch, Finding Intimacy

I had come to believe I was unable to break through my physical disability. I was wrong.

By Elizabeth Jameson and Catherine Monahon
Ms. Jameson is a fine artist and writer living with multiple sclerosis. Ms. Monahon is an artist and writer.


Sept. 19, 2018

One of my oldest friends is here to visit. For as long as we’ve known each other, we’ve been in sync, weaving in and out of each other’s lives and reaching milestones together. We married our partners around the same time, went through law school and medical school at the same time, got pregnant with our sons in unison and lived as neighbors for years. Although we have visited each other frequently, time has slowly gotten away from us. I haven’t seen her in more than a year.

She gingerly lies down on the sofa while I sit nearby. She isn’t looking good. Thinner than I’ve ever seen her, weak and in pain. “How are you?” I ask.

“Well, I have cancer,” she says plainly. She changes the subject, not feeling the need to linger on her recent prognosis or to specify that it is terminal. All I want to do is hold her hand, rub her shoulders and tell her how much she means to me with a firm, loving touch. I stay distant from her, unable to move. I imagine stroking her hair or giving her a pillow to feel more comfortable, but I cannot do anything.

"Emerging"
by Elizabeth Jameson

Our conversation ebbs, flows, then trickles into silence; there is not much more to say.
She rests her hands on her stomach, where she holds the most pain. Five years ago, I would have bridged this silence with a gentle hug or touch. But I am stuck, immobile, unable to express my thoughts and feelings. I don’t allow myself to cry as we say our goodbyes.

When I lost the use of my hands, I lost my love language. I have multiple sclerosis, which has resulted in the loss of the use of my limbs. My disease progresses so slowly that I am caught by surprise when I can no longer do something. Little did I know I have been losing my range of motion by a fraction of a centimeter every day. Nerve by nerve, I lost the use of my legs, arms, wrists, hands, pointer finger, thumb.

I can’t tell you when exactly I became a quadriplegic, only that I know I am now a part of the club. My paralysis limits me down to my fingertips. I can’t operate my wheelchair, can’t hold a coffee cup, let alone someone’s hand — I can’t actively touch in any way. Like a fortress, my wheelchair is both impossible to leave and difficult to enter. If others want to reach out and touch me, it can be
intimidating to make the first move. It feels like there is a thick pane of glass separating me from the outside world, and because of my physical disability, I begin to believe that I am powerless to break through.

Over the years, I have tried to make a home out of my fortress, my glass bubble, uncomfortably settling into my grief. There are times when I feel connected to others, but in most situations, I become passive. I work hard to forget the joy of touching. I am a positive person, I tell myself, I can deal with this. I set up camp at the base of my Mount Everest and try not to glance up at what I am missing.But I feel the loss of touch as if it were a limb that has been severed from my body, an invisible, open wound I painstakingly cover up each day.

Lisa Jameson, artist, writer and living with MS

I am hyper‐aware of the moments when words are not enough. When touching someone’s hand is the only way I can truly communicate my feelings. When I can’t greet someone familiar by warmly placing my hand on their shoulder. Or when I know someone is sad, and it’s not appropriate to talk about what’s wrong; I can’t reassure them affectionately. It is like not being able to breathe. This loss, in combination with the guilt I feel when I grieve it, is overwhelming. I resign myself to the idea that I will never experience consensual, nourishing, intimate exchanges of touch in everyday life.

It is in this state of numbed resignation that an unexpected crack forms in the thick glass that has been separating me from “normal” people: A ray of light that reveals a world of intimacy I have been overlooking.

I am visiting with another friend at a coffee shop. My voice is weak and hard to hear in crowded spaces, so I use a voice amplifier. The amplifier has a microphone and a headset that make me look like an aerobics instructor who happens to be teaching in a wheelchair. I’ve got my headset in place, but when my friend leans in to hear me, it’s no use. My voice is too faint. I motion with my head toward the dial on the device, which can be turned up to make my voice louder. He tentatively discovers the dial, locking eyes with me to check the loudness of my voice. As I keep talking, he turns the dial up, then up and up some more until, yes, there, he can hear me. We nod and smile in unison, return to our conversation.

As he settles back into his chair, I feel lightheaded. By increasing the volume of my voice, he had turned up the very essence of “me.” The fact that he cared so much to hear me. That he took the time to learn how to connect with me.
I had rediscovered intimacy, without touch.

ORIGINAL ARTICLE

 My mind continued to reel long after we said our goodbyes. Maybe I can experience intimacy, I thought. It’s just that the language of it all has just changed. I had to redefine intimacy for myself. What is it, without touch? The freedom to express myself. The joy of being recognized, seen, accepted, equal. Letting my guard down, no longer burdened by society’s version of me, by my version of me. The feeling when the stigmas of disability and illness are lifted. I eyed my version of Mount Everest, thinking that maybe there was a way for me to fully rejoin the living.

After that day in the coffee shop, intimate moments emerged from the fabric of my everyday life. I began to notice how friends, loved ones and total strangers could make me feel visible and whole in completely mundane ways. Appreciating them took my breath away: that someone driving my wheelchair is making love to me, that someone kneeling to my eye level is giving me a gentle caress, that someone feeding me is a joint experience of pleasure and tenderness.

Within the mundane there are beautiful surprises, too. On a busy day, before work, my husband pauses his morning routine to make me a poached egg, his specialty. Something he wants to make for me — I didn’t ask. A friend tries to feed me a cookie. He does it “wrong” at first, but the process of figuring out the best way is like an intricate dance. Over the holidays, a family member puts on Handel’s “Messiah,” music that I love and everyone else in the family finds annoying. They usually refuse to put it on, but this morning they play it just for me, blasting it so that I can hear the music through my bedroom wall.

I savored these moments, and as I did I was propelled and empowered by them. I realized I could play an active role — I could give as well as receive. So I took my intimacy into my own hands, even though I am still grieving what I cannot do. I leave base camp behind and begin my slow, labored ascent; the fluid, open concept of intimacy spurs me onward.

I have always loved food. I muster the courage to ask someone to join me for a luxurious, two‐ hour pastry‐eating session. We take the time to savor every crumb of a single pastry, eating at the same pace together, and I feel honored, loved.

I start seeing myself in others: I am a part of a tribe. Wheelchair users, people with multiple sclerosis, the elderly with canes and walkers, people struggling with aphasia or spinal cord injury. The list goes on and on. We are everywhere. I lock eyes with a 90‐year‐old man in a crowded elevator. He tips his hat to me with a warm smile. I see a woman with a mobility aide in the street and we grin at each other, comrades. Neighbors. Strangers. Visible, invisible.

I poke fun at my own disability, creating humor where there was once shame. When I’m drinking water, I have no way to stop, so when someone cracks a joke I laugh and spit water down my front. It’s humiliating, but hysterically funny at the same time. I have a damp front more often than not.
I now know intimacy can be everywhere. Moments I’ve noticed, received, created. You and I are sharing an intimate moment right now — because if you’ve gotten this far without turning away, you are a part of that exclusive tribe of people who truly see me.

But eventually, my quest for intimacy brings me back to the beginning. To touch.
My good friend is back to visit. We are trying to see each other more often — with less time left, it’s only natural. She lies on the sofa, and I verbalize all that I kept inside last time — how badly I want to stroke her hair, squeeze her hand, sit next to her. She smiles appreciatively, but moves the conversation along, not one to linger in the spotlight. She directs the conversation back to me.

We talk a bit more, and emboldened by my confession, I ask her if she would take my hand, if it isn’t too painful to move. Slowly, she sits up, and my caregiver rolls my chair as close to her as possible. She extends her hand, resting it in mine. We look at each other and breathe.




Elizabeth Jameson (@jamesonfineart) is a fine artist, writer and former civil rights lawyer. Catherine Monahon (@cxmdesigns) is a mixed‐media artist and writer. She collaborates with Ms. Jameson on writing projects.

Disability is a series of essays, art and opinion by and about people living with disabilities. The entire series can be found here. To reach the editors or submit an essay for consideration, write opinionator@nytimes.com and include “Disability” in the subject field.

Follow The New York Times Opinion section on Facebook and Twitter (@NYTOpinion), and sign up for the Opinion Today newsletter.
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Girl with MS Support Group & BelongMS are here to help!

Help!   I definitely need extra support during these epic times.  How about you?  


As many of you know, my focus is Conquering MS with Self-Care.  Self-Care means a lot to different people but for me it represents a combination of awareness, education, action, and medical expertise.  As people living with MS, the need for social connection is essential in keeping us sane. At least it is for me!  


One of my most asked questions is “Do you use an app or other social media to help with your MS?” And the answer is Yes. 

I’ve used and tried different apps and social media outlets over the years and each has slightly different offerings and options.  After being shut down by facebook due to a hacker, (My story here) I knew I needed something more reliable.  

For my current life with MS, I have chosen BelongMS (part of Belong.life) to share my twenty years of experience to help others.   

We created a Girl with MS support group.  And it’s not just for girls. As a certified life  coach, nutritional educator, health journalist and someone living with MS for twenty years, we have stuff to talk about!  There are many tips and tricks and just over all support that will help us live better with MS. Will help us all say, #takeTHATms!  

  


And now we can chat directly via Belong.  Anyone with MS can join Belong and find tons of support, friendship, expert advise and even clinical trials. Once the Belong app is downloaded and you have registered (click here for app), then you can scroll down and see the different support groups.  Mine is circled below and is the Girl with MS.  Join me!  




The Girl with MS Channel is all about Self-Care.  We’ll talk about different ways to take care of ourselves, ways to find ourselves and ways to support each other.  



Because if I don't take care of myself, this is how I end up feeling:  

  

But when I do take those extra steps, those extra little measures to take care of myself like medical visits, and extra caution,



I can have days like this: 



I’m looking forward to “seeing” you on Belong and having a channel to talk directly with all of my MS friends out there.  If you already have Belong App, then look me up and let’s chat!   


MS is a challenge but together we’re stronger.  Together we can support ourselves with questions, answers, encouragement and laughter.  Together we can BELONG!    


And together we can say #takeTHATms! 



A Year of Self-Care, Multiple Sclerosis and Covid Quarantine

Well, that was crazy. Here's to a more settling year - one of SELF-CARE

Staying safe and sane are my two goals.  

Covid and the quarantine brought out some interesting thoughts, actions and behavior over the past year.  Some of it fun and new, some of it not so great. 

I dabbled in cooking and sourdough, in painting and drawing, and in self exploration.  


A few friends passed this year and tragedy struck many. My life was getting me down but I started flipping it around and finding some peace again.  

These are just a few tips I'm using to get started on the right track this year.  

1.  Make a List - I made a covid bucket list and now I'm onto my next one. Of course I make lists for everything because my memory is not the best.  But this was just a list of things I wanted to try during quarantine, like the painting and artistic side that doesn't get to share itself as much.  

2. Create a Mantra -  I created this one to help me through the coming year:  "I see myself healthy and strong this year. I hear myself saying positive thoughts and words of encouragement to myself and others. I am open to using this time to learn new things and love myself with compassion." 

3.  Find Community - While it can't be done in person these days, community support is vital to our mental well-being.  There are several options online for finding virtual friendship with others living with MS - you know, the ones who get us?  I run a community on the Belong.life app, BelongMS, called Girl with MS.  Click here for the app.  I find this a safe place to be where we can ask a lot of questions and get answers from those living with MS. They also have a variety of channels to explore.  

4.  Set Boundaries - When a bunch of people are quarantined in one house, well, that can be a little annoying. Maybe a lot annoying.  It's important to set boundaries and ask for help. They might include a "do not disturb" sign, or a limit on the amount of cooking and chores that need doing, asking for help and communicating can help with this trick. Set time aside for you and your health. 

5. Connect with your Doctor - Make sure you are in connection with your doctor and adhering to vitamins and medicine. I found it very easy to slip into some bad habits about taking my supplements. I've kicked myself around and no more procrastinating! But when things were slipping I called my neuro and we spoke. I was experiencing extreme anxiety and he helped with some medicine and by listening. I needed those ears to hear me. 

6. Be Kind and Patient - This is a message for us and for others. Let's cradle our hearts in our hands and love ourselves unending. Let's be kind to ourselves and patient. Let's take this energy into the world and create a positive aura around us.  We can do this.   

7. Social Media Neurologists - There are several top notch, international renown neurologists with youtube channels, facebook pages and podcasts, all of which have clinically researched information. Meaning they know their stuff and have the expertise to back it!  

Here are some of my favorite folks to follow on Twitter:  

1. Dr. Barry Singer - @drbarrysinger
Neurologist and Director of The MS Center for Innovations in Care in St. Louis, Missouri. Learn more at MS Living Well.  

2. Dr. Brandon Beaber - @Brandon_Beaber
Neurologist and MS Specialist.  Author of the book, “Resilience in the Face of Multiple Sclerosis”

3. Dr. Aaron Boster  - @AaronBosterMD
The Boster Center for MS in Columbus, Ohio.  Leading expert in MS who is always sharing awesome tips! 
Dr. Boster helped me understand high-dose biotin in this interview and article posted on my blog.  Click here for his YouTube Channel

4. Dr. Jaime Imitola - @DrJim4MS
Director of University of Connecticut Multiple Sclerosis and Neuroimmunology work for a cure integrating stem cells, genetic and immunity.  Dr. Jaime has helped me with many of my Healthline articles. He knows his stuff!  

Here's a podcast with me and Dr. Singer. I needed a reminder about cognition!   

MS Living Well Podcast 9: Cognition and Multiple Sclerosis

Barry Singer MD, Director of The MS Center for Innovations in Care interviews:
Caroline Craven aka The Girl with MS is a certified life coach, writer and motivation speaker. Her writing focuses on articles in health journalism and highly rated blog. Her blog post topics range from personal experiences, research-based articles, recipes, life hacks and resources.

Click For Apple Podcasts

Click For MS Living Well Podcast 
 

There is so much more we can do but this is a start.  Take care of us.  Healthy eating, exercising, mental stimulation, rest, asking for help, seeking medical advice, and finding support.  These are all part of the self-care regime.  

I’ve also been enjoying my Cubii!  Remember that easy to use adaptive treadmill. Well, it’s one handy tool right now.  Cubii has special classes you can take online:
  • Carrie'e Cardio
  • Cubii Pyramid with weights or water bottles workout
  • Cubii functional fitness with Anne
  • Get your water bottle or weights ready for a Cubii workout 
Click here to join the facebook classes online!



Click here to learn more about Cubii

Well, this is my game plan for 2021. Join me and let's do this!   


I was just diagnosed with MS. Now what? Conquer MS with Self-Care

I needed this today.  Time to reNew You!  (Or me in this case).  Anyways I enjoyed reading through here and reminding myself what it means to do some Self-Care.   

New to MS?  or want to feel better with your existing MS?   Time to Conquer MS with Self-Care.

There is so much to cover with this title which is why my new book is in production!   But in the meantime take a look at these comments and tips.  Most tips below are linked to articles that I have written as a Patient Expert, Health Journalist and Life Coach.  Please click on the link to see studies, articles and more.  

Conquer MS with Self-Care


1.  Take a deep breath.  It will all be OK.  You are in for a change, but the levels vary for everyone.  Just know that things will get better and life will continue.  MS hits everyone different.  It will be important to be very compassionate toward yourself and your life as this disease unfolds.    

1.    Find a good neurologist – an MS specialist.
2.    Understand you are going through a change.
3.    Emotional balance may seem to slip away – seek help. 
4.    Talk with your MS Dr. regarding Disease Modifying Therapies (DMTs)more
5.    Love YourSelf!  Its good for MS!
6.  Check out My Favorite Resources Page - full of supplements that have worked for me.  I am not a doctor and these are affiliate links. But this routine has helped me for awhile now.  

2.  Modifiable risk factors:

MRF's are choices we have control over. Things we can start or quit depending upon our needs.  While none of these in particular cause MS, there is substantial proof that the following actions are beneficial for MS patients:

1.    If you smoke cigarettes, quit. 
2.    Reduce, respect or quit alcohol.  
3.    Limit salt intake.
4.    Reduce, respect or quit caffeine
5.    Do not use artificial sweeteners such as aspartame  (excitotoxins)
6.    Take additional Vitamin D(if low)
7.    Take Vitamin B12 (if low)
8.    Talk to your doctor about an NRF2 activator such as Protandim™ to fight oxidative stress. 
9.    Eat a healthy diet.  Nutrition is everything!
10.Eat a diet high in fish
11.Talk your doctor about Taking probiotics– health begins in our gut.  
14.High-dose biotin and potential for MS. My FAVORITE high dose biotin is Myetin.  Click to Order. (affiliate link)
15.Creating your own health:  using diet and nutrition to help MS

My FAVORITE probiotic:  VisBiome.





3.  Complementary therapies that might interest you:

3.   Massage




4.  You may find these fact-checked articles and “MS connections” interesting:

1.    MS and Epstein Barr Virus
2.    MS and antidepressant
3.    MS and decision-making
4.    MS and Sunshine
5.     MS and stem cell treatment
6.     MS and brain stimulation
7.     MS and horseback riding
8.     MS and laughter therapy
9.     MS and sense of smell
10.  MS and Exercise



5.   Life-skills.  Tips  and articles.  

1.    Connect socially at #BelongMS APP and reach a world of support. 
2.    Start a hand-written journal.  Handwriting is great therapy.  
3.    Build your support team.  Write down who is on your “Team”:  friends, family, doctors, pharmacist, nutritionist, massage therapist, yogi, God, whomever works for you. This list will grow and evolve during your MS.  
6.    Why me?  3steps to managing your angerwith MS.
7.    For better health, watch your words.  
8.    Can video games help MSsymptoms?  
9.    8 cooling and healing rituals for summer.
10.Get outside for 5 stress-busting exercises.  
11.Superhero saladrecipe for summer
12.3 recipesto help transition into spring. 





Contact me for any question!
and remember, together we've got this! 
 
Conquer MS with Self-Care