Posts by: Angie Rose Randall

My Experience Undergoing a DMT for my MS During COVID-19

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What’s worse: risking contracting COVID-19 or going without my monthly MS infusion?

Well, according to my neurologist, that was a no-brainer. I needed my DMT (disease modifying therapy) of Tysabri, especially given the fact I had just overcome a relapse last year developing 6 new lesions, and had finally gotten my body back on track.

With an in-shelter mandate in place in Illinois, it seemed only logical to get my infusion done at home. Safer to have one masked nurse at home than walk into a hospital treating COVID-19, right? Unfortunately, I learned that after several calls to BCBS and my neurologist’s office, that Tysabri is one of DMTs that cannot be infused at home in Illinois. Plus, my neurologist Dr. Dusan Stefoski at Rush University Medical Center, who I trust tremendously, assured me that both the hospital and the professional office building where they administer Tysabri and Ocrevus were taking all necessary precautions to keep patients safe.

(Want to learn more about whether your DMT is safe for COVID-19, head over to my blog “Resources MS Patients Can Trust During the COVID-19 Pandemic”)

So, I decided to move up my infusion by a few days to get in before we “peak” in Chicago and took the proper precautions

  • Wore a mask, gloves, glasses, and brought wipes and sanitizer in my purse.
  • Had my husband drop me off and pick me up to avoid the parking lot and walking through other parts of the hospital
  • I didn’t go into the elevator until it was empty.
  • I avoided using the restroom (which as you MSers know is HARD after an infusion).
  • Once I got outside to the car, I pulled off my top layer of clothing and put them and my gym shoes into a garbage bag which I immediately tossed in the washing machine with hot water when I got home. I then took a shower before engaging with my kids.

My Experience at Rush

I have always been tremendously impressed by Rush as an institution (so much so I joined their Women’s Board 2 years ago to help their efforts) and my experience today only enhanced that. Upon entrance into the front of the building (all other entrances were closed), they checked my temperature and even offered me a mask. Furthermore, security personnel and nurses all wore masks (and most wore gloves). Within the MS infusion center, all patients were very spread out and they closed the curtains surrounding each station for more privacy, with only one nurse coming in to administer the meds. Overall, the building felt eerily empty and quiet, and seemingly everyone was being protected (including the valet parkers who wore masks)

I should also note that the Emergency Room and Hospital area where they have tested 4,000+ patients for COVID-19 (8% or 600+ who have come back as positive as of 4/1/20) is separate from the MS Infusion Area. There is no chance of exposure.

Moral of the story:

✔️If you have to go in for your meds, take all the precautions. Everything I did above may seem like overkill but why risk it? Be smart.

✔️ Nurses, doctors, first-responders, and all of those protecting the safety of the public are total rockstars. I was terrified to go in to get an infusion but was soon reminded that this is their reality EVERY. SINGLE. DAY. They put their lives at risk to take care of YOU so please do your part in making sure you stay home and remain healthy.

Resources MS Patients Can Trust During the COVID-19 Pandemic

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I think we can all agree that there is a LOT of noise out there right now and it’s hard to know who to trust and listen to. As someone with a severe autoimmune disease, I’ve been trying to understand how COVID-19 could affect me and whether my disease-modifying treatment puts me at an increased risk.

I’ve consolidated a list of helpful resources below. Many of the questions I’ve had are answered within these trustworthy sources, so I hope they help you too.

National MS Society

“Ask an MS Expert” Webinar Series

Every week the National MS Society hosts a Q&A webinar with leading MS experts. Last week, the topic was about the Impact of COVID-19 on those Living with Multiple Sclerosis which addresses many of the questions we all have. Click below to watch the webinar.

MS-Navigator

If you have a specific question or concern, you can also reach out to a “MS Navigator” through the National MS Society’s website. MS Navigators can provide helpful information based on professional advice, published experience, and expert opinion. Click below to chat directly. 

They also offer guidance for the use of disease modifying therapies during the COVID-19 pandemic.

MS Experts

Reach out to your neurologist – I know this may seem obvious, but contacting your neurologist should be your first step.  They will ultimately be the person who determines your individual risks and protocol moving forward. My recommendation would be to educate yourself with the resources within this post, and write down a list of questions to bring to your neurologist so you’re prepared, confident and knowledgeable going into that discussion.

Prof. Gavin Giovannoni, An Academic Neurologist

The informative chart below by Prof. Gavin Giovannoni, an academic neurologist based at Barts and The London School of Medicine in London, clearly articulates the risks of Disease-Modifying Therapies in relation to the COVID-19 pandemic. Is your medication safe? See below to find out or click here to download the chart.

MS Disease-Modifying Treatments in relation to the COVID-19 pandemic

Stay Connected via Social Media 

Follow the hashtag #MSCOVID19

On Instagram you can now follow hashtags and #MSCOVID19 is worth following to see the latest posts across the world. Organizations, doctors, and those with multiple sclerosis are all weighing in so you’ll a range of content that relates to COVID-19 and MS.

Follow @TheSparkledLife

Eliz Martin is a fellow MSer and blogger who shares her experiences and promotes authentic conversation around tough topics, including COVID-19. Check out her Instagram where she discusses how MS affects Coronavirus and asks her followers about their concerns.

Where do you get trustworthy news? Any resources you want me to share with the community? Please let us know

How to Organize All Your Kids’ Memories & Work into a Memory Box

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You all know I’m a big organizer but what you may not know is that I’m also incredibly sentimental. My most cherished possessions are the letters Bill has written me, photo albums from my childhood and special cards that my parents and friends have given me over the years. I love to be able to “look back” from time and time to be reminded of these small but powerful gifts I’ve been blessed with.

So it comes as no surprise that I wanted to create a memory box for my kids that would hopefully become one of their greatest treasures down the line. It took me a few years of “trial and error”, per say, to figure out how I would actually construct this box of memories but I have finally figured out a system that works and collaborated with an Etsy designer to make customized, fun labels.

Memory Box

I created one box for Chloe and Jack that aims to house the most important items from every year of their life – beginning with my pregnancy through 8th grade. Each year (when applicable), I have a sub-holder for “School Work” and “Memories“. Obviously you are not going to keep everything from school that they bring home or every card they get in the mail so be selective about what you think really deserves to be included!

Below are a few Pre-school items I’ve kept in Chloe’s “School Work” folder.

For school work, I include work that Chloe is particularly proud of – art, letters, cards, sewing, etc. For her “Memories”, I include special cards from grandparents, her letter to a Santa, birthday party invitation (things of that nature).

I keep her Memory Box and Keepsake box (this includes non-paper like items that are special to her), in her closet so I can easy add to it.

  1. Extra large see-through container

These ones from Amazon are the perfect – they are an extra-large size, are meant to hold hanging files, and have a top that folds in half so you can have easy access to what’s in side. Unfortunately, these aren’t sold individually (I bought this package of 5) but used 2 for each kid and 1 for myself, so it was easy to justify 😉 They’ve all gotten good use!

2. File folders

You’ll need a ton of these folders so this package of 25 is perfect. They come in a variety of colors and are good quality.

3. White Folders for the “School Work” and “Memory” Sub-Folders

I used these white folders to organize the two categories of each year. They come in a box of 36 so you’ll have more than you’ll need!

3. See-through sub-folders

I organized all of the smaller / loose items in the “school work” “memory” folder in these clear sub-folders so everything would be contained.

4. Customized Labels

I went through the shop KPL Plans on Etsy to order these unique and colorful labels, but you certainly don’t have to do this. You can use any label maker (my favorite label maker is here). KPL Plans actually has a “Memory box” label package (shown above) but I wanted a few more labels / edits so I requested a custom order. I added other labels for “pregnancy”, “infant” and “toddler”, and swapped “yearly book” for “memories” since I thought that encompassed everything I’d want to keep. You can also pick your color palette!

A breakdown of all of the labels I ordered / you can make is below if you’d like to mirror:

  • Pregnancy
  • Infant
  • Toddler
  • Pre-school
  • Pre-kinder
  • Kindergarten
  • 1st grade – 8th grade
  • School Work – 12 of them
  • Memories – 13 of them
  • Important docs
  • School pics
  • My Awards
  • Sports Awards
  • Sacraments

Schedule Template to Download for Your Kids

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Many of us parents at scrambling to figure out how to organize and structure our days inside with kids. Chloe’s school gave us a template that I’ve found to be helpful so I wanted to pass it along as a starting off point for those who are interested.

You’re welcome to reference the one I made for my kids and leverage the template to make your own. I am hoping this will help guide us to be mindful of the important parts of every day – to learn, to exercise, to nourish, to play, to relax and to sleep – amongst all the chaos we’re experiencing.

Click here to view Chloe and Jack Schedule.

Sample Schedule Template

 

Practical Activities to Get You and Your Kids Through School Closures

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With the Coronvavirus pandemic resulting in school closures for weeks, many of us parents are panicking. Not only are we concerned for the safety of our families but also left scrambling to figure out how to create some sort of normalcy and routine for our children.

While “social distancing” will be challenging for all of us, I’ve decided to tackle this as positivity as I know (what choice do we have, right?) and thought of some activities that will continue learning in a realistic way. I know my strengths as a mom and what I can tolerate (I cannot play imaginary games for hours on end!!) so I also want to set up activities that I want to actively engage in 😂

Create a Responsibilities Chart

In our house we have assumed responsibilities for Chloe (“pick up your room”, “brush your hair/teeth”) but haven’t really thought through or formalized age-appropriate responsibilities for our now 4-year-old. I used this Weekly Chore Chart and my trusty laminator to make it permanent so we can show her progress daily and reward her every week. This will motivate her, I’m sure!

Get Kids Involved in Cooking Dinner

It’s now become part of our routine that Chloe helps me with dinner. I make an effort to figure out kid-friendly responsibilities for every meal like washing vegetables or fruit, chopping ingredients, peeling carrots or potatoes or even grating cheese.

I used this chopper when Chloe was a toddler and now she uses these kid-friendly knives. We also use this to clean veggies and fruit. With supervision, she is now learning to peel and grate cheese which takes some practice!

Water Plants in the House

With school closing, we were sent home with a classroom plant which automatically gave Chloe a sense of ownership with this activity. I’m also going to make it a point to go around the house every week with her to not only water our house plants but also pick off / throw away any dead leaves.

Bake Together for the Week

Rather than baking a dessert, consider working with your kiddo to create breakfast for the week – cheesy egg bites or chocolate chip waffles are a favorite over here – or banana bread in the form of mini muffins as snacks. I love to get Chloe involved by using measuring cups, mixing ingredients and pouring mixtures into smaller baking pans. These pans with small openings really help with hand/eye coordination and control and force her to take her time.

Cut and Arrange Flowers

This is a favorite Montessori activity that is easily translatable in the home and most importantly, can brighten up any situation. Buy a bunch of flowers and have your kiddo practice cutting off the stems and make them into their own arrangement. We have a lot of small mason jars and vases that I leveraged to help spread out the flowers around the house in different rooms.

Give Your Pet a Bath

Let’s kill two birds with one stone, shall we? Your pets need a bath and your kiddos need something to do! This teaches them to be “the parent”, too, which I know Chloe loves. She also learns how to scrub, dry off, brush hair – all useful lessons.

Make-Your-Own Pizza Night

This is a perfect activity everyone in the family can get in on and kiddos will enjoy. Roll the dough, spread the sauce and let everyone pick their pizza toppings. Don’t forget the wine! 😉

Plant an Indoor Veggie or Herb Garden

We just hosted a birthday party for the kids with a Peter Cottontail theme in mind so planting our very own veggie garden seems like an easy next step. We have lots of seeds and soil to plant and all you need is a small container with a hole to get started, so you don’t have to worry about weather being a factor. The best part about this is that kids can have fun doing it and also take responsibility to water their plants and see the fruits of their labor – literally.

Here is a simple, herb kit that you can start off with if the thought of collecting all of the items needed seems intimidating.

Make Fresh Orange Juice or Lemonade

I don’t know about you but I stocked up on everything at the grocery store – bags of oranges included. One day this week I plan to cut them with Chloe and squeeze them into orange juice using a strainer. You could also do this with lemons and sugar. Easy!

Hope these ideas help you – and me! 😉 If you have other ideas, I encourage you to add them in the “Comments” below.