Information Huddle

Benefits of an Anti-Inflammatory or Mediterranean Diet

One of the things that I have found most beneficial for my MS is to maintain an anti-inflammatory diet. This is because I am lowering my intake of foods that might cause flare-ups such as wheat, dairy, or sugar. It isn’t easy to drop these delicious foods, but it’s doable because there are plenty of delicious recipes available all over the internet and passable alternatives for specific cravings.

Unfortunately, some of the recipes take time and prep and if you are low on energy, that can be discouraging. Making food ahead or finding shortcuts can help minimize food prep-stress.

In the news recently, there’s been a lot of talk about the benefits of the Mediterranean diet. Looking at the two food pyramids for each diet there’s a lot of similarities between the two. So if you were ever considering doing the Mediterranean, or already on the Mediterranean, then you are maintaining an anti-inflammatory diet.

Food Pyramids

*I am linking to them to respect each site’s copyright.

Comparing the two, Dr. Weil breaks down the Mediterranean Diet in further detail, but each food category is in the same area of the pyramid; there are certain foods types you eat more of and others you eat less of and they overlap. While it may not be 100% the same, the overlaps are significant and the health benefits equitable.

The advantage to recognizing the similarity between the two is it can open up the doors for more recipe options with modifications. When starting new diets, it’s easy to get discouraged by recipe limitations. Having more options available can make the diet shift process smoother and more pleasant.

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Information Huddle

Talking to others about MS

There comes a time to reveal a difficult diagnosis to those outside the immediate family.

This can be a stressful or liberating experience. Friends may have suspected all along or been completely surprised by the information shared with them.

Revealing your diagnosis is an intimate act because you are sharing something personal with a friend in the hopes they will be supportive.

Because we cannot control others’ reactions after such a revelation, waiting until you are ready to talk is extremely important for your emotional health.

When to Say Something

First of all: you do not owe an explanation for your health. If you choose to divulge your diagnosis, that is a decision only you can make. Do not let anyone else force the matter from you.

If someone is visibly unwell and been so for a while, it may be harder to keep diagnostic information from others, particularly if treatment starts. It may be a relief in telling others because there is finally some information to share, but don’t be surprised if holding onto that information a little longer is more important.

While there might be a temptation to tell people immediately after the diagnosis, waiting until the information is processed is best. It allows for better preparation both with reactions and questions. Knowing which friends can handle the information with care and sensitivity helps in deciding who gets what information first.

But there may be some friends, despite waiting until you are ready, that may scale back the friendship because they don’t know how to handle your diagnosis. This hurts, but being ready for it will help mitigate the pain versus being blindsided. I made this mistake a few times and each time I wish I had waited to reveal my diagnosis or not bothered at all.

Only you will know the right time to divulge information, there isn’t a magic number or “best by” date to tell others.

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Information Huddle

MS Fundraising Opportunities

Fundraising is important to the longevity of a cause; it raises awareness, helps fund research, provides opportunities for those without financial means, and helps bring in volunteers who want to do more.

Fundraising for a particular group, like the National Multiple Sclerosis Society, helps create and sustain programs for those with MS and their caretakers, fund research opportunities, and hopefully fund a cure. Below are some ways to find a fundraiser right for you or creating one that fits.

Finding a Fundraiser

If you want to get involved in a current fundraiser – I have compiled some reputable sources that have ongoing events.

Creating a Fundraiser

If there isn’t a fundraiser in your area here are some tips for getting one started. For those outside the United States, you should be able to find a local MS group that will accept donations.

Other Ways to Raise Money

If you are like me, I love to shop with Amazon for pretty much anything. Several years ago, Amazon started a program where a portion of qualified purchases will go to the charity/non-profit of your choice. The cool thing is this is a portion of the purchase, meaning Amazon doesn’t raise the price of the item so it is at no additional cost to you to participate. If you already shop at Amazon it’s a great way to donate to the NMSS.

We selected the NMSS for our charity of choice and to date, the NMSS has earned nearly $143,000 for qualified purchases through the program by all who participate.

To learn more: Amazon Smile! program.

Facebook has been pushing “raise money for your birthday” feature, but at this point in time, there aren’t any national MS organizations available. I have looked into ways to change that, but Facebook does not make it easy to find any useful information. I will update this post in case anything changes.

What MS fundraisers have you participated in or recommend? Please leave a comment below with your experiences.


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Information Huddle

How to be Active in the MS Community

You don’t have to have MS to be active in the community, nor do you need to be aggressive in your activism. Getting involved to fight MS can take many different roles: spreading awareness on social media, joining lobbying groups, joining a social networking group, or starting your own fundraiser. Or it may be supporting your loved one who has MS by being present for them.

Whatever the level of involvement makes you an activist and appreciated by the MS community.

I have compiled several different ways you can get involved based on abilities or interest level below. All of these suggestions are geared towards North American activism, but some are global in nature. Check locally to see what opportunities your country might have for you.

Continue reading “How to be Active in the MS Community”

Information Huddle

Raising Awareness for Multiple Sclerosis

To kick the month off right, let’s have a brief discussion about Multiple Sclerosis. I talk a lot about having MS, but I haven’t provided information to why it’s such a troublesome disease.

Part of the reason is it has taken me until writing this post to acknowledge the down-and-dirty parts of MS. For the last five years, I have allowed myself a vague awareness of the disease itself, but never sat down and understood the particulars. I would research as far as I needed to, but rarely allow myself to dive deeper because it was too painful to acknowledge.

In fact, if we’ve ever had a conversation in person about my MS, I rarely use the word “disease” when discussing it. You’ll find it to be the same throughout the blog. I don’t like acknowledging that I have a disease. I prefer to use the term “condition” or “situation.”

I recognize that if I am ever to be truly successful in treating and managing my MS that I need to be fully aware of the risks, outcomes, and possibilities of the disease.

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.

Why Raise Awareness

As someone who has MS, it is extremely important for me to raise awareness for the disease. The more people know about it, the more funding will go towards finding better treatments and hopefully a cure. Unfortunately, there are a lot of misconceptions about MS and the very nature of the disease can be invisible which is why awareness is so important.

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.

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.

How to Raise Awareness

The rest of this week will detail ways to raise awareness based on your abilities. Wednesday’s post will be about events and opportunities to participate in MS activism and the community. Friday’s post will be about ways to start or participate in fundraising opportunities.

I provided some simple banners you could use on your social media accounts to help raise awareness this month for MS. Please feel free to download them for personal use.

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. From Cambridge University alone:

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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