2019-MS-Awareness-Month

Highlighting MS Symptoms

Normally this post would be for newsletter readers only, but for MS Awareness Month, I am making it available to all readers. Don’t miss a single post! Sign up for the MS Mommy Blog Newsletter today! It’s never too late to join the 2019 Wellness Challenge.


In Wednesday’s post, I highlighted a typical day with MS for me. I didn’t go into much detail of what it was like with each of my symptoms, but I wanted to spend the rest of the month focusing each post on a different symptom I’ve experienced in my MS journey.

The hope is to normalize my experience, both how I felt when I first experienced the symptom, and how I dealt with it. Obviously, what works for me may not work for everyone, but I want to highlight that even in the darkness can there be light.

Symptoms that will be highlighted for the rest of the month: fatigue, numbness, memory fog, Optic Neuritis, stress as an exacerbator, and working through recovery. Each Friday, in the newsletter, I will discuss the way I handled dealing with the symptoms highlighted during the week, so please sign up for the newsletter to read my experiences.

Please contact me if you don’t see a symptom discussed and want to see it highlighted in some way this month.


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A Typical Day with MS

MS is a disease where each person’s experience is different from another’s. With three different types of diagnoses, Primary Progressive Multiple Sclerosis (PPMS), Relapse-Remitting Multiple Sclerosis (RRMS), and Secondary Progressive Multiple Sclerosis (SPMS), the disease can behave differently from person-to-person. Within each type, there are a variety of symptoms that may not be experienced by each person. A typical day with MS will vary, but I wanted to spend today’s post discussing mine.

A Typical Day with MS

If I am in half-marathon training, then I will get up with the alarm clock really early. I typically get 5 – 6 hours of sleep which I know is not enough, but it’s hard to go to bed immediately after putting Jai to bed. I want to spend time with Ash, so I don’t get to bed until 11pm most nights.

My mood and energy are generally fine on these mornings. I keep my exercise gear set out so I don’t fumble looking for it. This allows me to sleep as late as possible before making the 15-minute drive to run with my mom.

After my run, I have to rush back home so Ash can leave for work on time. I will be full of energy at this point, but I start my first cup of coffee for the day. I probably drink 3 – 4 cups of coffee throughout the day and at least one cup of black or green tea in the afternoon to keep my energy levels up. I definitely do not drink enough water, which may be hindering my energy levels in its own way.

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2019-MS-Awareness-Month

What is Multiple Sclerosis?

Portions of this post appeared during 2018’s MS Awareness Month. I have updated to reflect new information.


What is Multiple Sclerosis?

Multiple Sclerosis is an autoimmune disease that causes the demyelination of the central nervous system. These attacks will disrupt signals from one part of the body to another which are expressed in a variety of symptoms: fatigue, brain fog, weakness, speech difficulty, and more serious manifestations.

Because MS is autoimmune, it means that the body attacks and damages itself sometimes beyond repair. 

There are three different categories of MS a person will receive when getting their diagnosis (Clinically-Isolated Syndrome [CIS] is the fourth type):

  1. Relapse-Remitting (RRMS): symptoms appear randomly and can range in severity. Once treatment of the symptoms is complete, the patient will return to “normal,” though some symptoms may persist after the flare-up. The disease progresses slowly if at all. 85% of new diagnoses receive the RRMS classification.
  2. Primary-Progressive (PPMS): neurological functions worsen at the onset of symptoms though there are no distinct flare-up or periods of remission like with RRMS. 10-15% of new diagnoses receive PPMS classification.
  3. Secondary-Progressive (SPMS): Around 50% of RRMS patients will progress into SPMS within 10 years of their initial diagnosis (specifically those who do not treat their MS). This is a progressive worsening of symptoms and neurological functions over time.

Anyone can get MS. That’s the scary thing. But there are certain groups of people who are more prone to the diagnosis:

  • People between 20 – 50
  • People further away from the equator
  • Women are 2 – 3 times more likely to get an MS diagnosis
  • Parent or sibling diagnosed with MS (~1-3% chance)
  • People with low vitamin D levels
  • People who had mononucleosis or another virus linked to MS at one point in their life
  • Already diagnosed with one autoimmune disease

It is estimated that around 2.5 million people globally have the MS diagnosis.

Busting Misconceptions

  • Getting the MS diagnosis is not a death sentence. Fifty or so years ago, before anything was known about the disease or ways to help treat it, it may have been. But now that there are so many disease-modifying therapies out there and complementary treatments, it is easy to manage the disease and help slow its progression.
  • No one is the same. If you have MS it is not going to look like mine nor is it going to look like your friend’s cousin. Yours or your loved one’s experience with MS is going to be unique to you and that’s okay. Do not compare yourself to others.
  • Start that family if you want.¬†If you are physically, financially, and emotionally capable, the decision to have a family should not be decided by the MS diagnosis. While there may be a genetic component to the disease, you are unlikely to pass the disease down to your children.
  • No, it is not spread through the blood. Unfortunately, many blood-related organizations are still very backward when it comes to their information about MS. The Red Cross recently opened it up so people with MS could donate blood, but local and smaller blood collection agencies may reject you if you disclose your diagnosis.My heart was broken when Jai’s cord blood donation was rejected based on my MS diagnosis. They claimed they would use it for MS research but I have no way of following up with them.
  • You can look and be glamourous¬†despite an MS diagnosis. Just look at Selma Blair at this year’s Vanity Fair party. Using a walking device can double as a fashion accessory and wearing gowns can be a more common occurance. MS does not have to take away your sense of style.

An Invisible Disability

MS is a disease that can external and internally manifest itself. People with mobility devices like canes or scooters, or have handicap allowances outwardly express their MS so outsiders can be more accommodating.

But there is a whole group where all the manifestations of the disease are internal: no devices, handicap provisions, or a way for outsiders to see that we have MS.

This is what makes it an invisible disability.

Just like people with mobility devices, allowances may still need to be made for us, i.e. opportunities to rest, take extra time to work on a project, or need a few days off to treat a flare-up, but getting those allowances can be met with resistance.

My one negative experience was weeks before my actual diagnosis. I just got out of the hospital from a 5-day round of intravenous steroids to treat my optic neuritis and was in a grocery store with my mother. I was extremely weak from the steroids, lack of sleep, and overwhelmed emotionally from the experience when I slowly rounded a corner with my cart (I needed it as a means of support) and an older man started cussing me out when I got in his way.

He was telling me that I needed to give way to him (I actually had the right of way in grocery store etiquette) due to his age and I needed to move quicker. I tried to explain that I was too weak but he moved my cart while I was holding it, cussed me out, and flipped me off as he walked away.

It was a humiliating experience. And I have been fortunate not to experience anything like it again.

Will there be a Cure?

At this point in time, there is no cure. But there is a lot of positive research coming out around the world about possible treatments and steps closer to a cure.

There are plenty of drug therapies out there that help minimize the impact of flare-ups and the progression of the disease, but we still have a long way to go before getting rid of MS and reversing its damage altogether. By raising awareness we can help keep the research momentum going and hopefully see it disappear in our lifetime.


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2019-MS-Awareness-Month

Through Adversity Comes Beauty

Normally Friday’s posts are for newsletter subscribers only, but for the 2019 MS Awareness month, I want to open up the posts to all readers. Raising MS Awareness is very important to me, so I don’t want anyone to feel excluded. If you aren’t a newsletter subscriber already, sign up now.


This year, MS Mommy Blog’s MS Awareness logo is a heart-shaped ribbon with a lotus flower at the center.

The lotus is deeply symbolic across the world, due to the plant growing out of the murky mud into a beautiful flower. So is the same for those of us with MS (or any chronic illness for that matter): through the murkiness of our disease do we grow into beautiful beings. The lotus reminds us to be compassionate, courageous, mindful, inner peace, and wisdom. These are qualities necessary to managing a chronic illness.

So for this year’s month of MS awareness, let us keep the symbology of the lotus within our hearts and remember through our personal adversity we are still beautiful people. The adversity shapes us and makes us stronger.

Ways to Raise Awareness

Just like last year, the MS Mommy Blog has a variety of ways to spread awareness on your social media accounts. If you use any of these images, please tag the MS Mommy Blog or use the #msmommyblog.

Facebook Profile Frame
Follow this link to try out this year’s profile frame.

Twitter Header (tag msmommy16)
Follow this link to go to the twitter header download page.

Facebook Banner (tag MS Mommy Blog FB Page)
Follow this link to go to the Facebook banner download page.

MS Mommy Blog Store

Throughout the month of March, the MS Mommy Blog store will be adding new shirts to help spread MS Awareness and show off the “Many Strengths” we have as we fight MS. A portion of each purchase will go to the National Multiple Sclerosis Society.

Follow the link below to see the wide variety of shirts available.


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Self-Compassion-book-review

Book Review: Self-Compassion

Almost a year ago I recognized I needed to change the relationship I had with myself.

I had a lot of negative emotions with no healthy outlet other than taking it out on myself. I searched online and through my subscription to Audible, I found several books to listen to while I was taking care of Jai.

That’s when I stumbled upon Dr. Kristen Neff’s book Self-Compassion. It was the first book I listened to it because the description spoke to me: finding a way to cope with the debilitating self-criticism I experienced every day. I listened to the book on my way to-and-from therapy, finding that it helped deepen each session.

Since first listening, or “reading” the book, I have found a marked difference in my demeanor and how I respond to negative feelings for myself and even for others. I’ve talked an awful lot about this book throughout my blog, so it was time that I sat down and actually reviewed the book.


What follows is my review of a book I chose on my own. I did not receive any compensation for this review.


Book Information

Title: Self-Compassion, The Prove Power of Being Kind to Yourself
Author: Kristen Neff, Ph.D
Date Published: 2011
Publisher: William Marrow
Pages: 305
Genre: Self-Help
Goodreads Links
Amazon Link (non-affiliate)
Official Book Website


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