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MS in the Time of COVID-19

I wanted to write a post about what it’s like to have MS in the time of COVID-19. A pandemic that overwhelmingly affects people with underlying conditions, which MS is. Chronic disease is an underlying condition. Adding in an immunosuppressant DMT can increase the risk of not being able to fight COVID-19. 

Does this mean I have an increased chance of dying from COVID-19 if I get it?

It’s not a simple “yes” or “no.” The answer is mostly, “I don’t know, but I can point to what the experts currently say on the matter.” Then I have to do what is right for me to stay safe. 

MS and COVID-19

First things, first. I am not a healthcare worker. Nor am I in public health. My knowledge in this area is minimal. It starts and stops with the amount of research I am willing to do on the matter. Therefore, take what follows, not as a replacement for medical expert advice.

And that’s what I want to may a point of: do your research on your condition. What you find might bring small comfort. 

When I sat down and researched my risk as someone with MS, who at one point in time was on an immunosuppressant DMT, I was shocked by what I found. For the current medical research out there, I am not at an increased risk of dying from COVID-19 if I got it. If I were older or had a comorbid condition, then I would be at a higher risk of contracting and struggling to fight the illness.

Outside of the MS, I am healthy. I have asthma, which is problematic. Still, my asthma is so well under control that you could make the argument that I don’t have it (diagnosed in childhood).

But if you have MS, your MS alone will not increase your chances of not being able to fight COVID-19. It’s everything surrounding the MS that might cause issues. That is why we, as people with chronic conditions, must be vigilant in how we approach this illness. 

Listen to current guidance from reputable health organizations, like the CDCWHO, or NHS. If you live in the United States, turn off the TV during the daily press briefings. Rarely will you get useful information on how to stay safe at this time, unless it is coming from the NIAID director. It is hard science and facts that will keep us safe and get us through this. Not intuition or feelings.

This is a great resource for what you can do to stay safe while living with MS.

When I was a Statistic

I recognize that not everyone is as lucky as me with their MS or chronic illness. At the very beginning of this crisis hitting the United States, I genuinely believed I was going to die from COVID-19. I swore that my MS would be the cause of it or my DMT.

For a solid month, I believed I was the person the news referred to when they said “underlying conditions” and “immunocompromised.” I was immunocompromised while on Tecfidera. But given the side effects I experienced and the pandemic, I decided to drop the DMT. I will be speaking more to my decision, and to my neurologist, on what my next steps will be in a later post. 

During this time, I was frightened. What I was most afraid of was not the illness itself, but leaving Jai and Ash. Jai would barely have memories of his mother, and I desperately wanted him to at least remember the love I have for him. Three is much too young to lose a parent, and my fear was for him rather than myself.

Believing I was a statistic brought on additional stress and frustration. It escalated my chances of an exacerbation (though I have yet to have one). It made my emotions run all over the place. I felt out of control, and I’ve talked about how problematic that is for me before. Grouping myself into the statistics was toxic for my mental health. 

I had to reign it in for myself and my family. That’s where the research helped me have a realistic picture of my situation. It gave me the necessary tools to feel more in control and how I managed my MS moving forward. I needed to find ways to provide myself comfort.

Finding Comfort

I want to preface this section by saying I am incredibly privileged to be secure in my home, my work, my food, and my family situation. I know not everyone is as lucky as me.

So, where do I find comfort at this time?

For me, it’s staying up-to-date on the latest science. I make sure to get it from vetted, reputable sources, not opinion-based “news” sites. There is only one way to look at the pandemic, and that is through hard science. The beauty of science is that it is always evolving. It is ever-changing when it runs into a dead-end or a faulty hypothesis. It adapts and finds new answers that push everything forward. 

It is through the science that I’ve found that I don’t need to live with the same level of fear I did a month ago. It is where I found my comfort.

But that said, the science is changing so much daily that it is sometimes best to give myself a day or two break from the latest news. Some days I only look at the information in the morning and don’t bother to interact with it for a day or two. 

Instead, I’ve created schedules for myself and the family that I stick by as much as possible. I try to create some version of a routine for us to help with our mental health.

Other things I am doing that provide comfort:

  • I minimalize our interaction with the public as much as possible. I’m getting us down to grocery shopping every other week. 
  • I made masks for the whole family. I wear the mask and gloves each time I have to go shopping (I properly dispose of the gloves, in my garbage at home).
  • I social distance as much as possible on runs or walks.
  • I wash my hands for 20 seconds and avoid touching my face for the day if I’ve been out in public.

The most important activity I do is to remind myself that this is temporary and will not be forever. I view all of this as a passing situation that I have to deal with for the next few months (or years), and will ultimately be a blip in what I hope will be a long life.

Yes, it hurts to be away from friends and running buddies. Yes, it hurts not to be able to go out in public spaces whenever I want. However, I am helping those on the frontlines of this fight by not putting myself in the hospital. 

Ultimately, I do not know which way the wind will blow if I catch COVID-19. I could be asymptomatic, it could be like a bad flu. Or it could be so devastating that I do need to be put on a ventilator. I don’t know how my body will react to it if I get it. Therefore, I take this time not to be angry at the injustice of it all, and it is unjust, but to appreciate what I am getting out of it. I am getting time with my family, time to read, time to explore new hobbies, and time to learn more about myself. 

I am grateful that I can write that last sentence. I know not everyone can.

We are in a difficult time, and living with MS makes it even more challenging. But the current science says that our MS alone will not increase our chances of getting and dying from COVID-19. The comorbid conditions impact that. I hope you find the same small comfort I did when I learned this information.

Remember, continue to follow the appropriate guidelines and keep yourself safe. We are in this together, and together we will get through it.

Attention to Chronic Illness Bloggers!

The MS Mommy Blog is looking to collaborate with other chronic illness bloggers for this year. If you have a chronic illness blog and would like an opportunity to tap into the MS Mommy Blog audience, please contact me here. I look forward to hearing from you.


Please consider supporting the MS Mommy Blog by buying a cup of coffee. If you find my content helpful, a little support helps keep the blog going.

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Featured photo credit: Canva

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Setting a Positive Example

I haven’t had a parenting post in a while, so it’s time for one. If you are like me, and a parent with a chronic illness, thoughts of “how can I be a better parent” come up in moments of self-reflection. A constant concern I have is, am I setting a positive example for Jai? Am I being a good mother, especially in the moments my illness seems to take over?

I feel like there’s a lot of expectations placed on mothers, especially on how we project ourselves in public and private. When we have moments where we are vulnerable, we get frustrated. Coupled with a chronic illness, especially invisible ones where society forgets we are ill, it’s easy to feel overwhelmed.

For myself, in the moments I feel overwhelmed, I feel like I struggle to set a positive example. With my MS, I feel obligated to set an example about the importance of handling things out of our control in a positive way.

When we have a Little Clone

It isn’t always the case, but have you noticed being closely aligned with a parent in personality? More like your mother or your father? Or a nice blend of both? If you are a parent, you may notice your child favors you or your partner more in personality.

This may be frustrating because two strong personalities in the same home is a recipe for conflict. But it can be a wonderful bonding experience if approached properly. The parent whom the child favors is able to identify personality quirks and be sensitive to particular needs. Rather than being an adversary, the parent can be a valuable alley within the home.

When a child is similar to us, it’s a wonderful opportunity to see our own behaviors in their purest form. Children can provide a deeper insight to ourselves.

I find that Jai teaches me how to behave better. Observing his interactions on the playground, he does not get upset when another child steals his toy. Rather than getting upset, he’ll move on to another toy. It’s an opportunity for me to learn from his wisdom: focus not on the loss of the toy, but the opportunity to do something else.

I recognize his behavior is age/developmentally based. In a few months, he may not behave so passively in a similar situation.

In those moments of adaptability, I encourage his behavior. Likewise, I want to make sure he doesn’t pick up my bad habits. Rather than swooping in and letting Jai know that something negative happened, I try to be as non-reactive to keep the situation calm and under control. My instinct is a bad habit developed over the years: take the toy back while reprimanding the offending child for not knowing how to share. This teaches Jai to be aggressive in a negative way and I don’t want to encourage that.

If Jai is upset over losing something, it is better I show him how to ask for a toy back in a nice manner, rather than fight bullying with bullying.

Setting a Positive Example to Children

Children, even in their worst moments, provide us with valuable insight to our own behaviors. They observe our every moment, behavior, and style of speech. A few weeks ago, when I braked the car suddenly, I heard from the backseat, “what are you doing?” directed at the driver causing me to brake.

I knew in that moment I needed to be more aware of the language I used while driving around the city.

Consider this: next time your child behaves in a manner you find problematic, step back and see where that behavior was modeled for them. Was it from you? A co-parent? A secondary caregiver? School? If you find that it is a reflection or response to your own behaviors, consider finding a way to change it so you model the behavior you want your child to have.

This might be particularly difficult to achieve with a chronic illness, but it is still possible. Use your illness as a teaching moment: sometimes we cannot control our own behaviors because of an exacerbation, but we are doing the best we can with what we have.

When you mess up, rather than ignoring it, sit down with a child and explain what happened. Do not excuse it. Provide a reason to your thinking and behavior, or admit you don’t know why. Walk a child through how you plan to approach the situation in the future and acknowledge that you may not remember/achieve it the next time. Admit to your imperfection, and reassure the child that it’s okay to be human but not okay to hurt others. Finally, make sure you apologize to your child if necessary.

Treat your child, no matter their age, like the human they are with all the respect that goes with it. You’ll find that the example you set, no matter when you start, will eventually payoff with some patience and compassion on your part.


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Featured photo credit: Michelle Melton


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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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Gratitude for my Parents

For the month of November, I am taking each day to highlight some element in my life that I want to express my gratitude about. This could be something deeply personal or just a passing appreciation for something more superficial. 


I talk about my parents occasionally on the blog, but their presence is in every post. It shines through the help my parents provide to make each post possible. My mother is especially supportive, she provides many of the pictures seen on the blog and the time watching Jai so I can write.

So for today, I wanted to express my gratitude for my parents who are huge cornerstones in my life. I find writing posts such as these to be extremely difficult because it’s hard to encompass all that I love and appreciate about my parents in a succinct way. The English language is flawed in many ways because there aren’t proper words to express the depth and breadth of my appreciation.

I will try my best despite this shortcoming.

My Mother

My mother is my biggest fan. She’ll be the first to tell you that. Which I think tends to be the case for a lot of mothers. I know that I am a fan of Jai and when he starts doing cooperative group activities, or activities in general, I will be one of his greatest fans.

Her mantra for me growing up was that I could do whatever I wanted to do, so do what I love. I stumbled along the way, my diagnosis catching me off guard and I took a couple of detours, but I am finally doing what I love: writing on a near-daily basis for an audience.

The only reason why I am able to do this is my wonderful and supportive mother. Jai is a handful now that he’s a toddler and sitting down during my peak energy hours to do my writing is near impossible because it coincides with his most active play time. She makes the journey several times a week to watch Jai for a few hours while I write, do extra work, or clean without worrying about him getting underfoot.

Some days just having her with me helps keep me from feeling lonely or depressed, so her presence is soothing to me even as an adult.

But that’s not the only thing I appreciate about her – without her, I do not believe I would be successful in my health journey. She is my running and accountability buddy. On the days she is unable to make it out to meet me for a run, I am not motivated enough to go by myself. I know I need to work on that, but I really enjoy meeting up with her in the mornings to chat about all sorts of things. I find that I look forward to these runs, even if we’re doing the really long one for the week.

She’s always been my inspiration for a variety of things in my life: she went to college while I was a teenager, so I was inspired to go; she started running many years ago to get healthy, so I decided I could do it myself; she’s showing what it takes to be an awesome grandparent to Jai, so I hope I can follow in her footsteps if he starts his own family someday.

My Father

My dad and I are alike – we look similar, we have very similar personalities, and we have the same sense of humor. Because of this, we have that unique connection that comes from parents with children who are little clones of themselves. I understand him and he, for the most part, understands me.

Growing up I have a lot of fond memories of time spent with my father. We would go to to a local lake and stick our feet in the water for fish to nibble our toes. When he had a motorcycle, I remember him taking me on mini-day trips around the state where it was just the two of us.

He encouraged me to climb the trees in our yard, helping me get started on one particularly difficult tree and the two of us spending time up in it chatting away. We would wait until my mom would come out and check on us and then play pranks on her while she was on the ground. She did not appreciate it, but the two of us giggled until the tree shook.

As adults, we aren’t climbing trees anymore, but I enjoy the days where we sit on the back porch and sip Scotch while grilling or having a fire in the firepit. In those moments we can talk about everything and anything – and I enjoy hearing how much he loves spending time with Jai when the topic comes up.

I appreciate how seriously he takes being a grandfather to Jai. I knew he would love being a grandfather, but it’s a lot of fun seeing how he plays with Jai. I have very similar memories of play with my father when I was younger, so it’s like watching the past. Jai adores my father and always asks to see him when he’s gone more than a week without seeing his Grampy.

 

I recognize how lucky I am to have both of my parents in my life, especially now that I am getting older. I know that having one or both parents is a luxury at my age and I try to not take that for granted, especially considering how supportive they are in my life. It’s hard for me to demonstratively express my gratitude and appreciation for them, as I feel embarrassed sometimes over such things, but I am trying to be more active so they are aware of my appreciation and Jai learns that showing gratitude for those closest to us is important.

Because of how things worked out this year, I will be spending the Thanksgiving holiday with my parents and I hope to express the gratitude shared in this post with them over supper.

How have your parents helped you grow as a person that you are grateful for? What would you say to them if given a chance? Leave your stories and thoughts in the comments.


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Featured photo credit: Photo by Mihai Surdu on Unsplash


My Love of Cooking (& Baking)

Every superhero has an origin story.

My superpowers reside in the kitchen. I am not going to put on false humility about it: I am a great cook and baker. Are there people who are better? Absolutely, and I am not going to be joining any competition shows because I know there are plenty of people who are better than me. But I am good.

Growing up, cooking and baking was an act of love for my mother. Every meal contained a lot of passion, care, and flavor. Seeing her work in the kitchen was inspiring and made me want to be like her. When I grew up, I wanted to have a family tied together by my cooking just like we were with hers.

What follows is my introduction to the art of cooking (& baking) and how I fell in love with it as a hobby.

A Childhood Introduction

My childhood home was centered around the kitchen as the main gathering place – for eating, cleaning, and chatting. Many hours were spent there – most of the time with my mom working and me just watching her prep, assemble, and make. I would stand behind the stove and chat about my day at school while she made dinner or dessert.

I absorbed all that she did while I watched her work. Many times I was asked to stir something while she moved onto the next step and other times I felt comfortable enough to ask her questions: how can you tell the candy is ready? why does the temperature of the oven matter? what does a clean knife mean after inserting it into the cake?

I never saw her get discouraged in her work. Frustrated, yes. But not discouraged. If a dish didn’t work out quite like she wanted, she never threw in the towel. She would look over the recipe and realize that most of the time it was written badly. Her cookbooks are littered with marginalia to direct her future self on how to make the recipe a success. 

I didn’t stay on the sidelines either. My real introduction occurred when my mom had me help her as a toddler, with my first project using cookie cutters for a batch of Christmas sugar cookies. I would press the cutter into the dough and many times the dough would come out with the cutter, stuck. I would pull this dough out of the cutter and pop it into my mouth. I think out of a potential batch of 24 cookies, we successfully made 18. It was my earliest experience as a quality control tester as well.

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