2019-a-reflection

2019: A Reflection

For the past two years, I’ve written a reflection for the last post of the year. Read 2017 here and 2018 here.


2019 was the year of the crucible. I underwent a lot of “lessons” in life; some brought on via self-reflection and others brought on by the natural flow of life. I learned a lot about myself, my capabilities, and where I see myself going in the future. In the three years, I’ve done these posts, it was the most challenging year emotionally, but the easiest year relating to my MS.

The Down Points

  • From October to December, I encountered some of the most challenging months in my adult life. These months rivaled my diagnosis with all the emotional upheaval. I lost Lytton in November, one of my forms of emotional support, while dealing with other challenges at the time. It felt piled on.
  • I continued to do a lot of heavy self-reflection, particularly with my role in my relationships and anger. The self-reflection often left me drained, but I am getting better at managing both. 
  • While I am getting better with my time management, I still struggle to get ahead on my work and stay ahead. With the past few months of upheaval, I’ve fallen drastically behind on several projects. I am struggling to get back into the swing of things. Additionally, I am grappling with being kind to myself because of this lag. I am seeing missed time as time wasted.
  • I am fighting against a victim mentality that crops up when experiencing a downcycle. My cat passed, I am falling behind, I am struggling to achieve goals, etc. – all played into previous internal tapes of “woe was me.” I have moments where I curl up in bed with a book or my phone to escape, but I try to set myself a timer to break out of it and be productive again, even if it’s with one task.
  • This last one needs to be at the end because it straddles a down point and positive point: getting back on my medicationThe down aspects of getting back on Tecfidera: it definitively means Ash and I are stopping with Jai for children, it’s a physical acknowledgment of my MS, and the pain I am about to undergo with the first month of side effects. 

The Positive Points

  • I decided to re-start my medication because I knew it was the right thing to do for my health. By re-starting Tecfidera, I am creating a more significant buffer between my well-being and my MS. It is an insurance policy to help me manage my MS when I have another downcycle of stress/emotional change. It’s also a physical acknowledgment, to myself, that my health is worth it.
  • I rediscovered my love of reading this year. It’s been over ten years since I sat down and read a book for pleasure. While in graduate school, I was afraid of wasting time on pleasure books when I could be doing research. I also found that graduate school temporarily blocked my love of reading because of all the heavy lifting I did. But I vowed to read more for the blog, so I started with audiobooks and graduated back into the physical medium. As I started getting into depths of the emotional upheaval that was this fall, I read more to escape. I found reading to be a soothing distraction, educational at times, and it also sets an excellent example for Jai. I plan to continue to read more in the coming year.
  • While my time-management was less than ideal, I learned that the more organized I am, the more satisfied I feel. I also found that I am less stressed if I have a flexible plan in place. I am less likely to put things off, though I still have my moments of procrastination. If anything, I learned that I am one of those people who benefit from structure, minimalism, and organization.
  • Last year I contemplated the role toxic friendships played in my life while feeling frustrated that a lot of my relationships had harmful elements. I recognized I stacked my friendship cards against me by rejecting or minimally pursuing positive relationships in my life. This year, I opened myself up to new relationships while maintaining my sense of self, something I hadn’t done before. Because of it, current friendships grew more profound, and I made a bunch of new friends along the way. 
  • My running took off this year. I ran in three different states (Florida, Nevada, and Wisconsin), and even PR’d on a half marathon, almost making it below two hours. I officially decided that I would begin the process of qualifying for the Boston Marathon. While I have a long way to go (like running a marathon in the first place), it’s a goal I’ve created for myself to see what I can achieve. I think my running has helped me manage my MS and my emotional well-being, along with getting me in a healthier space.
  • While it hasn’t been my most traveled year, I did get around the country quite a bit for 2019. I traveled to Florida for a Walt Disney World running weekend in January; I went to Las Vegas for my best friend’s birthday in March; and to Wisconsin twice (July & November) to visit with my in-laws. It was a year filled with a lot of new experiences, which I enjoyed very much.
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Love & MS

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


We don’t get to choose whether or not we get MS, nor do we get to decide when we get that diagnosis. For some, it comes while in a relationship, and for others, it happens outside of one.

Either scenario forces the following self-reflectiondoes my partner stay with me? And, do I disclose my situation on a date? MS is challenging because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosisis my partner with me because they feel obligated? Do they resent having to care for me? Are they only interested in me because they have to “fix” me? What happens if they leave or die before me?

It is little wonder that many bloggers and experts refer to MS as the third wheel in a relationship. It’s an unwanted obstacle that can put a strain on any current or budding relationship.

The Third Wheel

MS is the unpredictable cousin that comes into your life and needs a place to crash until they get on their feet. They take up space on a centrally located couch and refuse to leave when you want to watch a movie with your partner (or bring a date home). They say they are looking for a job, but really spend all day watching half-hour courtroom shows with ads for injury lawyers.

It’s that cousin that interrupts you every time you want to have a conversation with someone. Because of the interruption, you forget what you were saying and get frustrated because you can’t remember.

Simply put: MS is an unwelcome third-party to your relationship that isn’t going to leave anytime soon. No matter how many times you ask it to get its act together and move on.

Trying to figure MS out and how it factors into a relationship is extremely hard. In addition to maintaining a relationship, I am trying to learn my limitations. How much do I put on or ask of Ash? Should I even ask him to help? Is the relationship lopsided? Am I really that bad that I need his help? Or am I just imagining things?

MS is always hiding in the background of every thought or action I take. I have to plan out my day to make sure I have enough energy for when Ash gets home to make any interactions with him meaningful. I have to pause frequently and ask myself: am I feeling this way because this is normal for someone who only got 4 hours of sleep with a teething toddler, or is this because of the MS?

As you can see, I ask myself a lot of questions. I tend to overthink things, and so it takes a lot of energy to manage my MS. So when it is time for quality time with Ash, sometimes I just don’t have what it takes to be the partner I think he deserves.

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Adaptive Parenting

This post was originally published in March 2018. I’ve updated it to include a follow up since the original publication.


While MS can make parenting difficult, and I have to be okay with my limitations, there are ways to be the parent I want to be. Remembering that I am enough for my son, and he won’t necessarily recognize my limitations helps. I learn to plan workarounds in our daily lives to minimize MS’s impact. As he transitions to a different developmental stage, my adaptations will evolve with him. My ability to be more interactive will increase as he grows older. 

This isn’t advice, but an insight into how someone deals with their MS and what works for them. If you are a parent with MS or newly diagnosed, remember to be gentle with yourself and don’t compare yourself to others. You are doing the best you can, and that’s the most important thing.

Finding Alternatives

I’ve related some of my personal frustrations regarding my MS: fatigue and mental fog. Fatigue prevents me from being able to have the energy I need to chase a toddler, and mental fog means that I can’t recall information quickly. Learning opportunities feel like they slip away because I can’t remember information quickly or accurately.

Below are some ways I actively adapted my parenting due to the MS. I am sure there are other things I do without thinking that are adaptations, but I can’t identify them right now.

Fatigue

This is a rather simple solution for me: take rest breaks when I can. But with a toddler, that’s easier said than done. Additionally, when I take rest breaks, I feel guilty because I am not spending active time with him. Below are some ways I’ve adapted my parenting despite the fatigue.

Playtime

How I’ve worked around it: encourage more independent play for Jai. While he’s going to be 18-months soon, he does a lot of independent play for his age. This means I will sit in the room with him while he plays with his toys, or when we go to the park, I will sit and allow him to explore safely. When I need to intervene, I do. Still, for the most part, I will enable him to entertain himself when I am feeling unusually fatigued.

This is good for him in several different ways. It grants Jai a safe form of independence that will help boost his confidence. Jai can critically think through a problem, like detangling two toys. It also allows him to discover his abilities or limitations. When he is around other children, I found that taking a hands-off approach improves his socialization.  

I gauge his emotional mood, and if I feel he needs more one-on-one interaction with me, I will get down with him and play for as long as I am able. I warn him if I find my energy is flagging. This is to avoid a sudden stop in playing from me. I will then redirect the play into something less high-intensity, like reading a book or playing with a stuffed animal.

I have found that “alerts” have helped minimize any sort of upset feelings: “Mommy has 5 more minutes that she can play like this with you,” or “you can go down the slide 3 more times before Mommy needs a break.”

There is liberal use of timers in our household. I will use the timer as an objective third-party that can arbitrate the length of my play. I do this to be fair to Jai and to begin teaching the concept of time. When the timer goes off, Mommy needs to take a little breather, therefore take that time to play independently again.

Naps or Rest Breaks

Jai would take two naps a day, averaging two hours at a time, and I used these periods to get things done or take a nap myself. He’s hit a developmental stage where, in his opinion, naps are mere suggestions and no longer necessary. It’s a toss-up if he’s going to take his morning or his afternoon nap, so the only way we know is if I put him in his crib.

While he may not need those periods to sleep, I need them to rest so I can keep going throughout the rest of the day.

That’s why I continue to keep him on a nap schedule, but they are rest breaks for the both of us. For about an hour, he will be in his crib with quiet music playing, pleasant lighting, some of his favorite toys and books, and allowed to play until I can collect him.

By putting him in a calm and low-sensory stimulation environment, I am giving him a chance to calm down and process all the activity during the day up to that point.

When he gets older, and I am more confident in allowing him to be out of his crib unsupervised, it will transition to quiet time, which is similar to his independent play. He will already be used to that quiet time, it will only be a location and activity change.

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Sugar and Chronic Illness

This post was originally published in October 2017. I’ve updated it to include a follow up since the original publication. Find my thoughts on sugar and chronic illness under my update.

2019 Note: This was a check-in post relating to a series of diet changes I made. Because I was breastfeeding Jai, I could not take my MS medication until I finished. I wanted to find a way to manage my illness until I restarted my medication.


Cutting sugar went smoother than I expected, though there were a few days where I was irritable, according to Ash. I refuse to believe him, but deep down, I know he’s right. No longer having that emotional crutch makes for a very grumpy me.

Psychologically speaking, it was a lot easier than I expected. As long as I didn’t have sugary treats in the house (I tossed all of our sweets or sent them with Ash to work); I avoided buying sugary drinks (everyone knows that my weakness is a good Pumpkin Spice Latte in the fall). If I had fruit for any sweet cravings, I was good to go. Every time I drove by a Starbucks, there was a temptation to pull in and just give in to that PSL craving, but I made sure to keep going and have a few bites of pineapple as soon as I got home.

A couple of times, I did eventually stop at Starbucks, and I made sure only to order an Americano. Before I was pregnant, I was in the habit of drinking all my coffee black unless it was a latte. It wasn’t hard for me to get back into drinking with nothing in them. I think it helped a bit too.

Coffee is a wonder drug (and sadly, probably something I need to add to my drop list), and can make a lot of things better.

I didn’t notice any headaches, though, at the beginning of the week, I was more sluggish and in need of an extra nap or two during the day. By the time Ash came home from work, I was very ready to pass Jai off to him, so I could lay down and not think or move for an hour. By day 3 or so, I had a little more energy, and by this morning (day 5), I had even more energy to do my running around without the need for a nap.

I also noticed that during my long run on Thursday, I was able to keep up with my mom and felt less fatigued at the end of it. I also felt motivated to go again this morning (though that would be off schedule). Me? Motivated to run off schedule? This really is unheard of – I hate running.

While shopping, I made sure to review all the labels like I said I would: any time it was High Fructose Corn Syrup or unidentified form of “sugar,” I would move along. From my research, they said that sugar is hidden in everything, and it really is true. Sugar is everywhere. Foods that I usually love to eat, like certain types of crackers or even grab-n-go frozen meals…all contain sugar. I also made sure to avoid agave and honey. If the item were sweetened with fruit juice or dates – I would be willing to grab it to consume.

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Veganism and Me

This post was originally published in November 2017. I’ve updated it to include a follow up since the original publication.


2019 Note: This was a check-in post towards the end of a series of diet changes I made. Because I was breastfeeding Jai, I could not take my MS medication until I finished. I wanted to find a way to manage my illness until I restarted my medication.

One week of the vegan diet down and going strong. It’s difficult to tell if there’s a difference in my energy level while I am still fighting this chest cold. Still, I do feel like my mood is relatively calm and mellow.

I am anticipating that once I start feeling better that I will notice a spike in my energy levels. After my first flare-up, but before my diagnosis, I went vegan for a few months. I found it as a natural energy booster while I wasn’t consuming caffeine. I expect the same results because I am eating similar to before, if not better, because I am not eating sugar or junk foods.

I am finding that I am craving meats and STILL craving fried foods. While I am not craving beef or pork, I am craving chicken and salmon, mainly fried chicken and fries. I still haven’t indulged in my fried food cravings, but I am astonished at how much harder it’s been to drop those foods. I expected sugar to be the hardest for me to remove from my diet with the cravings, and it hasn’t been.

I occasionally feel sorry that I can’t indulge in sweet treats, especially in the fall, but what I wouldn’t give to have some salty fries right now. Or onion rings. Or mozzarella. Or some sort of fried chicken skin…

I found some puffed veggie “fries” that work as a snack, and I’ve been making homemade microwave popcorn for idle snacking at night. I am going to try baking some fries or a vegan version of twice-baked potatoes. I think either of those might help satisfy my cravings.

Next week is the penultimate food removal and going to be the most difficult with functioning in the real world: gluten.

Overall Health Update

Getting on the scale this morning, I have officially lost 12 pounds from when I first started this journey. It was never about weight loss, but to see that this morning was a huge confidence booster. Hopefully more of it will melt off as I eat healthier and healthier and keep running. Once I finally hit a bottom with the weight loss, I will reveal official numbers.

2019 Health Update

It’s interesting how things come full circle. I maintained the vegan diet through the end of 2017 and into part of 2018 but found it unsustainable when I dropped gluten as well. I re-introduced eating dairy, meats, and gluten and never noticed that energy boost. Still, I suspect it had more to do with not maintaining as balanced of a diet as I intended.

In April of this year, I went vegetarian again and transitioned back to veganism in June. My reasons for transitioning back to veganism had less to do with health, though that was part of it. It had more to do with ethical reasons and being mindful of my overall environmental impact. This time I was more conscious of my diet, especially with all the running I’ve been doing. Since transitioning to vegan in June (but still eating gluten), I’ve had more energy and feel better overall.

I indulge in junk food, especially after several days of intense running training. I just ran an intense half marathon, so one of the first meals I had was a plate full of fries. I maintained the attitude I was going for back in 2017, and that is to embrace moderation.

I still firmly believe making dietary changes have helped me manage my MS while off medication. I won’t say it was any one thing, but rather, being mindful of my eating and ensuring it was balanced. If you could call my eating habits anything, it’s mostly clean eating with the occasional fried/unhealthy indulgence.

As to the weight mentioned at the end of the post, here is the official number reveal I promised. I was 164lbs when I started my journey in September 2017. When I wrote this post in November 2017, I was approximately 152lbs. According to the BMI standards, I was still considered overweight. At my most recent weigh-in, I am down to 130 lbs. This puts me solidly in healthy weight territory.

Two different races, two years apart.

I suspect losing nearly 60 lbs (I was 186 at my highest when pregnant with Jai) helps manage my MS. I don’t know if this is true, but I do feel better overall because of it. I understand this isn’t something everyone can do, especially with a debilitating autoimmune disease, but if you have the means to lose weight, it is worth trying. 

I wanted to revisit this post since I wrote it exactly two years ago, and it was interesting to see what changed and what stayed the same. It’s not often I think of taking the opportunity to see my personal growth.


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