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


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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Conquer MS with Self-Care! Tips and tricks for surviving these Covid Times.

Tips for Surviving 2020 with MS


For nearly 20 years now I have been battling my multiple sclerosis (MS).  Good days, bad days, every which way days.  I’ve had them all.   

 

I could not walk or see unassisted when the MS struck me.  Now I’m thriving in my own MS way.  It’s not the life I was used to or expected for me, but you know what happens when we have too many “plans”.  Time to let go and let life plan itself. Time to move forward with MS.  My success has been based on a natural, holistic approach to living with a lot of monitoring and help from my doctors. Life skills and stress management have played major rolls in my success.

Times like these we can benefit from learning to move forward...read more

TiPS and TRiCKS to stay healthy and cool this Summer:

Importance of Making a Plan B

Escaping the Red Zone of MS

Cooling and Healing Tips for MS

Join GWMS on youtube 

Radio Show - Tips and Tricks for living better with MS

"I'm newly diagnosed with MS - now what?" 

 

MS Living Well Podcast 9: Cognition and Multiple Sclerosis

MAY 21, 2020

 

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 
 

Dave Bexfield (ActiveMSers.org) along with Kathy Reagan Young (FUMSnow.com), Cathy Chester (anempoweredspirit.com) And many more saved this Girl with MS during some really dark times. And that was before Covid. We have so much love and support out there. Reach out and see what there is to learn. Click here to see the full list of helpers/advocates. We’ve got this!

 

 

The Rocky Ride of MS and What Helped

Multiple Sclerosis is like riding a roller coaster in so many ways. 

This past year has shown a lot of love for this Girl with MS.  Some symptoms subdued, others raised their voices.  But top on my list was meeting so many wonderful people living with MS across the country, in person and around the world via the internet and telephone.

Despite my good year and pleasant holiday, the MS reared its ugly head with a bad case of pseudo bulbar affect or PBA.  One minute laughing, the next in tears.  I just call it the funk.  And it got a holt of me bad the other day. 

The fact it's the end of the year caused a bit of the emotions. Focusing on what did not get done in 2019 led me down a path of quick depression.  Even healthy people have to give themselves a break, but the pressure and disappointment that one can put on themselves can be debilitating.  And that's where I found myself.  

You know what helped?  All of these MS advocates and friends Read more...

Football season is a coming, not sure what it will look like but I’m getting ready.  Love my Oregon Ducks and Puddles!  #takeTHATms!
Take the Self-Care Challenge! 

Self-Care is vital in our fight against MS.  What can we do for ourselves?  Life skills lead to better health. One of these skills is to learn to quiet the mind... read more

Potential natural treatments for MS 

Alternative Therapies for MS  

Why me?  managing anger in MS
 

Surviving the Covid Quarantine

Life as an MS patient brings enough uncertainty and stress. 
These last five months have created challenges upon challenges. But it’s also provided opportunities.  I started a sourdough starter as did many people. I can’t eat a lot of gluten as it affects my MS in a bad way but it’s been fun making stuff for the family.  More importantly is that I posted two great resources to learn more about living with MS during Covid.  One is by the awesome @CathyChes at The Empowered Spirt and the other by Dr. Terry Wahls and the Wahls Group.  Did you know that elderberry during this time may not be a good thing?  So much to learn....read more...


 
Take action to potentiate your wellness. 

Other natural treatments for MS symptoms.
 
Keep on Moving if and when you can! It took me awhile to build up my strength after some time off. And this heat will have me down for awhile, but enjoy the little moments and all achievements.  

10 Ways you Can Prepare to Age Well with MS
by guest writer Anita Fernandes

Conquer MS with Self-Care:  GUT HEALTH

Much research has been done regarding gut health and MS.  And let’s face it – our guts are not healthy!  When we take pills by swallowing they have to compete with every other bacteria in your stomach and gut.  This can be a detriment for folks living with MS.