My Point of View...  as a single parent with a Multiple Sclerosis.  

One Perspective on Parenting with MS.

DISCLAIMER: I am not a trained health care professional. I choose to share my journey as a single parent with MS. 
The information in my writing it MY experience and should not be taken as medical advice. 

 

I Hate Supermarkets

I Hate Supermarkets. There I said it. I hate everything about them.  They are too bright, there is too much walking, lately they don't have what I came for. 

The pain in my neck

Kids can be a pain in the neck, as the saying goes. One thing that never really impacted me prior to this exacerbation was pain. 
I have lots of different kinds of pain. The pain in my legs, hands and neck are the areas that most impact my life. 

In the last couple of months, as the exacerbation wears on, the pain is getting more pronounced.

Explaining MS

Here is my biggest parenting beef with MS. 

It changes too much.

Now, I don't mean how it changes my life or parenting style. I mean how I can be "okay-ish" one minute and later I can be "not-okay"

'Look at All the Good' Mantras

How I keep my head on straight when my brain has holes in it. 

Mother Christmas Letter

Mother Christmas

I had an idea the other day while at church.  The Mini had asked if she was going to give away her older toys that she doesn't play with to kids who need toys.  I said, "Yes of course, just like last year." 

Happy Holidays

The Days Before Christmas | December 2021

Five Days Before Christmas - Ocrelizumab Infusion Day 2. 

My MS

My MS

I ended a previous post with information about my current MS symptoms.  I wanted to continue talking about my MS here to give people some information about Multiple Sclerosis from my point of view.

Disease Modifying Treatment for RRMS

Today is my first infusion of Ocrevus. I am going to an infusion center in the city, about 45 minute from my home. Crossing my fingers for smooth sailing into the city. 

Social Media & Ableism

I have been struggling finding care for the Mini in the morning since last July when I started looking. I have reposted the job regularly and shared it in a range of places on social media.  I thought that I had described the job well.  Turns out I didn't and over the last couple day people decided to start telling me. 

Uncooked Thanksgiving Turkey

Thanksgiving x2

November 25

The Wednesday before Thanksgiving is pretty special. Each year (minus 2020) my school cooks a full Thanksgiving dinner for the students. We even invite people from the larger school community. It's a great day for our community; for many of our students this might be the only full Thanksgiving meal they get. This year we even had a student bring his father so that he could also take part in the Thanksgiving celebration.

Christmas list for someone with Multiple Sclerosis

Christmas with MS

Holiday Shopping Ideas for Warriors. 

A Multiple Sclerosis Gift Guide

I have put together a list of items that others with Multiple Sclerosis might light for a gift.  Check out my 9 items below!

When Kids Get Sick

November 5, 2021

In September the Mini went to kindergarten. I was piecing together morning care so I could work. The schedule was always changing as I went to doctor appointments and treatment. It has not been a smooth introduction to big girl school.

Focus Change

Nov 1, 2021

You're probably going to notice that I'm posting a lot less about the fairy cottage right now and more about me. Well here is a recap.

(Hold onto your seat because we are going to jump around a bit. Try to keep up.)

Halloween with MS

Oct 27, 2021

Let's get ready for Halloween! Nah, let's head to the city for a PET Scan with radioactive tracers! 

Parenting with Forearm Crutches

Oct 23, 2021

To say that Halloween is one of my favorite holidays would be an understatement. So I booked The Mini into an arts & craft event in a neighboring town. Traffic was unbearable getting there. Once I got closer to the town center I saw that there was a huge Fall Festival happening. And so did The Mini. 

Intermittent Mobility Issues

Intermittent Mobility Issues

Oct. 15-18, 2021

Handicap placard… well I reached out to my healthcare team again. I wanted some clarification about handicap placards. 

What?? 

"But you can walk!?! You paint houses, and lay flooring! You are not Handicapped! You are the kind of person who ruins a well intentioned system."

Looking for Baseline

Looking for Baseline

Well the plan is to start a new medication this fall. Hopefully before Christmas.  If all goes well with insurance maybe even before Thanksgiving.  I will also be taking part in a study.  That means that I will not be taking any medications besides over the counter options.  No problem! 

Who Needs Sleep

Who Needs Sleep

October 5, 2021
Well I broke down and reached out to my neurologist...

Teaching & Parenting with MS

Teaching & Parenting with MS

Sept 14, 2021
Well I just picked up my iFMLA form from my doctor's office. I am a couple weeks into the school year and my MS is definitely impacting my day to day. I had 2 new lesions on my MRI this summer.

Parenting with a Chronic Illness

Parenting with a Chronic Illness

Aug 16, 2021
August is turning out a little bit more challenging that I would have liked. In general heat makes my Multiple Sclerosis worse, in general having any severe infection makes my MS worse.
Then I wasn’t feeling too great one day. The mini was with her dad, and I decided to try to relax after getting home from the Fairy Cottage.

© 2022 Katherine DeSilva
© 2022 Katherine DeSilva
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