Lifestyle & Blogging

The First Couple Days…Weeks…Months…

This is a conversation I wish someone gave me when I first received my diagnosis. While it is tailored specifically to MS, I hope some of the thoughts are universal enough for any difficult medical diagnosis.

CW: Discussion of suicide, self-harm, and depression within this post. If you or someone you know is feeling suicidal, please contact Lifeline at 1-800-273-8255. If you are in crisis, text CrisisTextLine to connect with a crisis counselor. You are not alone.

After I got my MS diagnosis I went through a period of shock and relief. I was shocked that it was MS but relieved to finally have an answer. Ultimately, the shock overpowered the feelings of relief and I found that my emotions spiraled out of control.

I don’t remember the first couple days, I think I was numb from trying to process the information: it was like finding out a loved one had died. Every couple of minutes I’d get distracted enough to forget, but as soon as I turned my mind to it, my heart sank and it felt devastatingly fresh again.

The numbness I felt was me unable and unwilling to process the news. 

I was aware of MS since High School because my art teacher had it. I remember my mom telling me about MS, explaining why my teacher may seem fatigued or snappy towards the end of an afternoon class. I also remember sitting in the art room, watching my teacher gush about Cezanne and thinking two things to myself: one, “Oh god, I hope I never get MS;” and two, “it would be the end of my life if I ever got it.”

I was wrong on both thoughts. I may have MS, but my life isn’t over.

So You Have MS

Welcome to Club MS where no one wants membership. 

Right now you’re searching online for meaning and information. There is a lot of information out there and I understand that this post is going to add to the noise. I wrote a simplified post about MS, but I recommend checking out the NMSS for thorough information on the disease if you want specific medical details about MS.

I am not going to offer advice on how to cope with the news of the diagnosis, but provide insight to what I went through to normalize your experience to a certain extent. While working through a diagnosis is unique to each individual, there are certain aspects to the process that are universal. You are not alone in this journey.

There’s a good chance you will go through a range of emotions like I did. Hopefully, relief will be one of them because there is a sense of calm of finally having an answer to what is going on with your body. It makes what is intangible – tangible. What was presumed to be just in your head is now externally acknowledged by a medical professional.

These feelings of relief probably won’t comfort you past the first 48 hours or so. But it is something to keep in the back of your mind for later as you move through your coping process.

The next set of emotions may be frustration and betrayal.

I was frustrated that my body was attacking itself but equally betrayed by it. Here I was, at the end of my 20’s looking at a lifetime of disease; where Ash would have to take care of me if I progressed past a certain point; and I would be a physical, mental, and emotional drain to all of my loved ones.

As a younger person, the idea of having a disease or getting sick was something that happened to other people. I took what was presumed perfect health for granted. I remember thinking to myself: I lived my life relatively well, I was a good person, I did what I was supposed to, why is my body punishing me? What wrongs was I atoning for? This does not happen to good people.

I sank into a deep depression. I was completely lost about what I was facing, how I would face it, and how I would get through it. I felt completely selfish because I could only think about myself. I couldn’t and didn’t want to think about anyone else.

I went to a very dark place and stayed there for several months. There were moments where I was suicidal over the whole situation. If I killed myself, I would regain control of an out-of-control situation. More importantly, I would be able to remove myself from Ash’s life and no longer be a burden to him. The sooner I did it, the sooner he could move on and find a healthier partner.

I never acted on it, never made any serious plans. Instead, I pushed it down the road: if I start to be a burden for my loved ones – then I would do something about it.

I am not saying, nor am I recommending entertaining these thoughts, but by pushing the desire back it helped give me the clarity to healthfully resolve my thoughts on the matter and get to a point where suicide was no longer a viable option at any point in time.

It was around this point that I realized I was going through a form of grieving after getting the diagnosis. Grieving a medical diagnosis for yourself is, in fact, normal. It helped contextualize what I felt in the months after my diagnosis. It also helped me move through the stages more effectively because I now knew what I was experiencing was normal.

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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.

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Passing Compassion Along

This is the second week in a 3-week series on parenting observations. Week one is based on gentle parenting, week two is about parenting with compassion, and week three is about parenting with a disability.

These posts are based on my personal experiences as a parent and are not meant in any way to judge other parenting styles or decisions. I am offering my personal research and conclusions as possible suggestions for others out there, therefore these posts will be as objective as possible. When it comes to parenting: provided the method isn’t abusive, there really isn’t a wrong way to parent your child. Be secure and do what works best for you and your family and ignore outside judgement.

Incorporating compassion towards yourself and your little one will naturally lead to raising a compassionate child, but there are other ways to work compassion into the daily routine. There are a lot of great suggestions out there from various parenting websites. I’ve pulled a list together of my favorite suggestions that I want to incorporate with Jai as he grows up and as reminders of what I can do on a daily basis for myself.

Nota bene: This post will be using the universal “you/second person” pronouns throughout, so while it may not speak to your experience directly, it may apply to someone else you know.

Compassion is Nurture not Nature

For some children, compassion appears to be inherent, but for most of us it is something that needs to be taught either by adult example or via life lessons. To best ensure a child becomes a compassionate adult, it is important to teach compassion as part of the growing process. Age of the child (or adult) does not matter, it is something that can be trained at any point in life.

Compassion is not fundamental to being human, but the greater compassion (and self-compassion) a person has, the greater their personal success both personally and professionally.  More than self-esteem, teaching compassion will increase a child’s ability to successfully navigate the world. Increased self-esteem is secondary to compassion in most cases, though it follows closely behind.

Therefore, teaching compassion will be helpful in making the world a better place on a macro-level, but on the individual level for your loved one. The world becomes less harsh, not because of rose-colored glasses, but because your little one does not take adversity personally and takes it in stride. When bad things happen, they are viewed as lessons for growth and not personal insults to their being.

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Personal Motivation

Make a “Day of Service” a Year-Round Event

In the United States, today is a day of service meant to honor the life and message of Dr. Martin Luther King Jr. Many people have the day off, so it’s easy to coordinate events for people to volunteer and do good within their community. There are plenty of opportunities to go out and do something specifically for the day. These tend to be small time commitments meant to make the most of the volunteers’ work.

Yet, it is only one day out of the year set aside for helping others. Consider expanding commitments to be a year-round thing if capable, double/triple/quadruple the good throughout the year. It doesn’t need to be every week or every month; if committing once every other month is possible, it still goes a long way to help others.

Making the commitment to do something more has its place, specifically for your health. I’ve already mentioned that there’s a lot of positive health benefits for a person who is generous with their time for others. And being generous to themselves. It also sets a great example for your children to do more within their community when they get older.

Below are some ideas for honoring Dr. King’s legacy throughout the year.

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