ms-covid-19

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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Red Hats for Little Hearts

This post was originally published in December 2017


The holidays can be a stressful time for anyone and for those of us who craft, we tend to use that crafting skill as a cathartic outlet. For me, I have a lot of energy and so I crochet as a means to keep my hands busy and out of trouble.

It works most of the time.

I really enjoy making something for another person. I’ve made a Griffin, Phoenix, the Lorax, and Scrump (from Lilo & Stitch) dolls for various friends and family members. The look of joy that comes on the receiver’s face always thrills me considering the time, thought, and effort put into the project.

Because this week’s theme is about generosity, I wanted to highlight a personal project my mom and I did with our crafting. The campaign is in February, so I wanted to provide enough time to raise awareness and give readers a chance to create something.

This year my mom mentioned that there is a program that collects handmade hats for newborns to raise awareness for heart health. February is heart health month in the United States, so this campaign is meant to raise heart health awareness for mothers and their newborn children by providing handmade hats for the little ones.

These hats will be distributed to local, participating hospitals to all babies born during the month of February.

How to Participate

This page provides all the necessary information, but here’s the quick run-down.

  • Find your state and select a group participating in the cause
  • You may need to contact the coordinator to get more information on how they want to receive the hats and their personal deadline
  • Make as many hats as you want and send them out before the deadline
  • If you are not a crafter or don’t have the time, consider donating to the American Heart Association

Restrictions

  • Hats will need to be simple, so please do not add any bows, pom-poms, or flowers to them (these pose choking hazards)
  • Currently, this program is only in the United States, but I have a couple of links below for other yarn-craft donation programs outside the States

Knitting Patterns

Crochet Patterns


Other Crafts for a Cause

If you make some hats (or participate in another project) be sure to post a picture of it in the comments below. I would love to see how they turn out!


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Photo Credit: Michelle Melton


Civic Duty

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. 


Today, in the United States, is the mid-term elections. So I wanted to express how grateful I am to have the opportunity to vote.

I remember learning about voting through elementary school and about the suffrage movement at the beginning of the twentieth century. I grew up knowing that being able to vote was a right, but as a woman less than one hundred years away from the Nineteenth Amendment, it was also a privilege of sorts. My great-grandmothers would have gone part of their lives unable to vote whereas I knew that once I turned eighteen I could register.

As soon as I was able to, I registered to vote. Every time I moved I switched my registration. If I knew I wouldn’t make it to the polls for a particular election, I filed for an absentee ballot or moved heaven and earth to make it home. I can confidently say that I have not missed a single November or Primary election. I even try to go to the smaller ones for the local elections.

If I ever missed an opportunity to vote, I can count them on one hand.

Voting is extremely important to me. I recognize the sacrifice that the women underwent so many years ago to make sure I had that right to vote that I don’t want to ever waste that opportunity. I feel that I am able to honor these women by standing in line and waiting my turn to cast a ballot. By going to my polling station it’s an act of gratitude for all of those who went before me to make it possible.

I also recognize that my ability to vote and the fact that my vote counts, is a privilege. Not everyone has free and fair elections even in my own country. While there is a lot of vitriol out in the US political climate right now, our elections are still relatively free. Racially, I am part of two groups of people who have historically been disenfranchised, so each time I walk up to get my card I am nervous that I might run into some conflict with a poll worker.

My state is currently under national scrutiny for the disenfranchisement of some voters over the course the current mid-term elections, so getting out to vote was extremely important to Ash and me.

So important that with the exception of the 2016 elections (Jai was only one month old at the time), I make a point to bring Jai with me to vote. I want him to see that this is his right and if he wants to help bring about change, he needs to see how that happens. Right now he’s enjoying the sticker at the end, but when he gets older I want him to enjoy watching Mommy or Daddy pressing buttons on the screen and watching the card spit out after the vote is cast.

I will start explaining what each election is about, who is running in it, what they are running for, and explain why I am voting the way I am. I hope he’ll ask me plenty of questions along the way and more importantly, I hope it gets him excited to go out and vote as soon as he can at eighteen.

So while it may be a minor thing to be grateful for, I truly am glad that I have the opportunity to play such a small role in how my country is run. Sometimes it feels as though my voice isn’t heard or ignored, but I know that I did what I could regardless.

Do you enjoy voting? What’s your favorite part of the process? Share your thoughts and any fun stories in the comments below.


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Featured photo credit: Photo by Element5 Digital on Unsplash


A Culinary Education

Part of the process of raising a foodie is teaching a child how to cook and bake. If you want to appreciate what’s in front of you, you have to know how it’s made on a fundamental level.

Jai knowing how to cook and bake by the time he turns 18 is important to me. I want to know that he is able to take care of himself in the most basic ways without having to rely on others to do it for him. If despite knowing how to make meals for himself, he chooses fast food every night for months on end, I am okay with that. When he’s ready to impress a potential partner or roommate with his domestic skills, he’ll be able to do so.

To start this education, it means that I need to introduce him to the kitchen as soon as he’s ready. Right now I am letting it take a more natural route, letting him drift in and out of the kitchen, answering questions he might have and include him when I can. I don’t force the issue once he’s lost interest. I want the experience to be enjoyable, not frustrating for either of us.

Innate Helpers (and how to take Advantage)

Toddlers are innate helpers. They want to help parents around the house even when it makes more of a mess in the process. Unfortunately, there is a tendency for parents to discourage this “helping” desire because of the mess, which discourages the child’s desire to help as they grow older.

Rather than discourage this tendency, it’s recommended to encourage it as much as possible, which is what I do with Jai. I try not to take the task away from him when he makes more of a mess, but gently guide him towards the appropriate way to clean or pick up his stuff. At this point his responsibility level is minimal, but his enthusiasm is astronomical.

Right now, it makes more work for me, but I know that as he grows older he will be able to be more helpful. I am just waiting for his attention span, dexterity, and even a growth spurt or two to come in before he is able to help in a more meaningful way. Until that happens, though, I have to continue to encourage his help even when it slows me way down.

With that in mind, I work in more time to do certain tasks that I know he’ll be interested within the kitchen. Breakfast isn’t a quick ordeal because he has to help me crack the eggs, scramble them in a bowl, put the cooking spray cap on, and supervise my cooking of the eggs. What should take me 5 minutes from start to clean-up takes about 10 because we have to wash his hands after cracking the eggs in the bowl and little distractions that stop all progress for a few seconds.

There are days where he’ll hear the blender running and come rushing in to see what is happening. In those instances, I shut the blender off, show him what’s inside (though mostly pulverized), and let him push the button to get it started again.

There are other days where something I am working on bothers him for no explanation. I was trying to assemble my espresso stovetop maker the other day and he came in to check on what I was doing. He saw the utensil in my hands and got very upset. I tried to figure out what was bothering him about the maker, but he was just shaking his head, going “no, no, no” in an extremely concerned voice. I put it down and waited until he left the kitchen, 5 minutes later, before I tried to assemble and make my coffee again.

What it boils down to is respecting his wishes and independence in the kitchen, even at 23-months. I am respecting his desire to help, learn, and make (some) decisions with the end goal of him feeling comfortable helping me and learning more when he is ready.

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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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