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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Embracing Big Changes in Life

At the end of October, I wrote about the prospect of losing Lytton to a mysterious illness. I had hoped to get more time with him as we thought we had a few options to manage his health. But towards the end of November, we had to do the compassionate thing and end his suffering. I learned a lot about embracing big changes in life during that time.

While I consider myself fortunate to have a few weeks to prepare for it, I am still in shock over the quickness he went from healthy to terminally ill. From the first sign of his illness to when we said goodbye was a month and a half. I prepared, but it’s hard to move that fast for such a substantial change.

Yet, significant life changes happen all the time. Our diagnosis. Buying a house. Losing a loved one. Finding someone new to love. The changes discussed in this post are the ones completely out of our control.

Change happens. Sometimes we can prepare ourselves for it, but often we cannot. What we can do is take the time to embrace the change. Regardless of whether you consider the change positive or negative, it’s going to happen regardless of your wishes. Rather than fight it, we find a way to work through it.

How Can Change Help You?

Change can help us, even if it’s unwelcome. I don’t know when I will reach the point where I can sincerely say losing Lytton helped me. Each day, I go through all the stages of grief as I try to move through my new normal.

Yet, I admit that losing him tested the effectiveness of the wellness journey I’ve made over the past few years. I did not need the confirmation that it works. But, the fact that I still haven’t experienced an exacerbation is proof that I am managing healthily. 

Lytton’s death reminded me of the impermanence of life. I pushed death to the back of my mind as something that happens to other people but hasn’t touched me. With that attitude, I did not appreciate everyone around me in the way I do now. I recognize that anyone can leave me permanently, with no explanation. 

Finally, it reminded me that change happens, and I can get through it. The last time I experienced a “negative” life shift was after my diagnosis, almost seven years ago. I regrouped and was eventually able to move forward. 

Change, whether it’s good or bad, can help you discover essential things:

  1. The importance of taking time for yourself. If you experience a life change, negative or positive, take some time to sit with it. 
  2. Self-care, again. The further I get into life, the more confirmation I get surrounding the importance of self-care. Self-care can be in celebration or to help calm oneself after the change.
  3. How resilient we are and why finding ways to adapt is essential. While we must accept an uncontrollable change, we don’t have to roll over. We can find ways to adapt and adjust to change. 
  4. Appreciate life before, during, and after the change. We can recognize what we had before, find ways to enjoy life as it is, and understand what life might be in the future.
  5. Finding the positive in the negative. It might take some time, but there’s always a silver lining even in the negative changes. You might find comfort knowing what’s going on with you, be at peace because a person no longer suffers, or allowed to try a new career opportunity.

Embracing Big Life Changes

The key, I’ve found, is to lean into the uncontrollable changes for better or for worse. There are some changes we can fight for, opportunities we can pursue even if the door keeps shutting. But often, significant changes are out of our hands. We cannot prevent the new direction our life goes in, so we can accept the outcome and find ways to adapt.

The first step is acceptance and embracing the big changes. Finding ways to adapt follow closely behind.

For me, while I would love to run out and find a Bombay kitten similar to Lytton, I am learning to reconnect with our other two cats as a form of acceptance. Lytton was such a significant presence in our household that often, the other two cats functioned like roommates we cared and fed. I am spending more time with them, whether they appreciate it or not, and loving on them.

After my diagnosis, I fought the information, choosing to be ignorant of my MS because it was too painful to acknowledge. Behaving this way did not improve my quality of life. But once I took steps to accept and adapt my reality, I found greater satisfaction with everything.

If there are negative feelings associated with significant life changes, it’s hard to accept and adapt, especially in what we feel is a timely manner. Remember to honor your timetable, but be open to acceptance as your goal once you’ve finished mourning (death or health change). 

Big changes are going to happen in life. We have two options when encountering change: embrace it or reject it. When we embrace the change, it allows us to heal and move forward. When we reject it, it can prolong our dissatisfaction and cause stress.

In the end, the decision is ours how we deal with change.


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assessing-2019-goals

Assessing 2019 Goals

We still have a few more weeks left in 2019, and I can’t believe it. This year flew by a lot faster than I care to admit. I was on the phone with a friend the other day, and they pointed out how close to the holidays we were. I realized I was in denial, but as much as I would like to think there are more weeks left in 2019, we are nearing the end.

To that end, I am trying to get ahead with my goals for 2020. But before I do that, I have to begin the process of assessing how my 2019 went. Before the commotion of the holidays is upon us, I encourage you also to take a few minutes to determine how your 2019 went. It might surprise you and give you a little extra pep going into the holiday.

My Self-Assessment

I created one primary goal and four minor goals that would work to help me achieve my main goal. I decided to keep it simple this year, as I was doing something I’ve never done before: work to stick to my goals.

For those signed up for the newsletter, what I am about to list out isn’t news. I kept my 2019 goals “private” amongst those who follow the MS Mommy Blog newsletter, but at the end of the year, I have no qualms about sharing them now. My primary goal for 2019: to lose 10 pounds over the year. My four minor goals to help me achieve this:

  1. Meal planning
  2. More cross-training
  3. Run a faster half marathon
  4. Work towards being less stressed overall

Surprisingly(?), I found a measure of success in four of my five goals. My primary goal: on January 5th, I recorded my weight at 141 pounds. As of a few days ago, I recorded my weight at 130 pounds, a weight I’ve held steady for several weeks. I had two reasons for the weight loss goal: one, to get me solidly in the healthy weight range according to the BMI. Two, to help me run faster races to help me achieve personal records.

I believe that the success of this primary goal is due to creating four smaller goals that worked towards it. Each one forced me to be mindful of my eating and exercise habits, and working towards a faster half marathon meant I needed to pull my weight down.

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assessing-chronic-illness

Assessing your Chronic Illness

Chronic illness takes many different paths. For some people, their illness takes over their lives, rendering them immobilized from disability. For others, it registers as a minor inconvenience where they can lead relatively “normal” lives. And there’s a chunk of people who fall somewhere in the middle. As we near the end of the year, it’s an excellent opportunity to assess our chronic illness objectively. As we look towards the new year, it allows us to enter 2020 with a fresh perspective about ourselves and our disease(s).

Often, we think we know where we fall in our chronic illness scale. Sometimes, our emotional mindset distorts the actual reality. I make this point as someone who fell into a trap believing I was worse than I was. It took several self-reflection sessions to realize I was not looking at my MS realistically.

Because I was unrealistic about my MS, I was not approaching my management effectively. I thought I couldn’t exercise, I couldn’t hold down work, and struggled for a time over becoming a mother. My distorted view of my abilities limited me for several years from achieving my personal goals.

Now, this isn’t the case for everyone. You may find that you do have a realistic grasp of your disease, and that’s an ideal place to be. You know what you need to do to manage it. However, if you haven’t taken the time to assess your illness and abilities, you may have some positive news after your reflection. You may find that you are more capable than you expected.

Assessing Your Wellness

There are times where we are painfully aware of our abilities and limitations. If diagnosed with an extreme form of your chronic illness, like Primary-Progressive or Secondary-Progressive MS, then there is a physical limit to your abilities. There is a clear delineation between what can and cannot be done.

But the majority of the people diagnosed with MS are initially diagnosed with RRMS, around 85%, which is a “milder” form of the disease. There is a range between those who barely feel their MS to those who undiagnosed PPMS or SPMS. And because of this range, it’s hard to be sure of our capabilities. While it might be tempting to do, we should never compare ourselves to others as the manifestation of the disease changes from person-to-person.

Easy to say but hard to do when it’s in our nature to measure ourselves by others. When you have celebrities out there publicly displaying the most extreme aspects of their MS, without providing any context (if they have RRMS, PPMS, or SPMS), it’s hard not to wonder: will that be me someday? Will I need an extreme form of drug therapy? Will I have to shave my head? Will I lose my voice? Will I need an expensive mobility scooter?

How bad will my chronic illness get, and should I be more cautious in how I live to avoid progressing the disease along?

Chances are, you won’t follow the same path as these celebrities, at least not right away. But ask yourself this: is the mental image of my disease, in its current state, matching reality? Am I making decisions on my condition based on what I see others doing, and not what I am capable of doing? Have I removed myself from the equation altogether and not effectively treating my disease?

To restate: do we fall into the trap of pre-maturely disabling ourselves because we have a distorted view of our illness?

I did. For years after getting my diagnosis, I assumed I would be permanently disabled by the time I hit forty. I started to act like I was on the path of disability, discouraging myself from actively treating my disease beyond medication. I had the attitude of “why bother?” for a lot of things in my life. If I had eight more quality years, why commit to something that would take ten years? 

It wasn’t until I committed to becoming a mother did I start to assess my abilities honestly. It took months after Jai’s birth for me to realize my perspective about my illness did not match reality. While I still deal with fatigue, I was not fast-tracked to immobility by forty as I thought. When I realized this was the case, I saw the limitations I kept experiencing surrounding my MS wasn’t from the disease but from me.

It was rather liberating when I came to this realization.

Going into the New Year with a Chronic Illness

Taking the time to assess your chronic illness provides you with the tools to decide how you want to approach the new year. If you’ve wanted to make some goals for yourself, but felt discouraged over whether you can do it or not, take time to assess and test yourself. 

For example, you may accurately assess that you cannot walk very far due to mobility issues. But you’ve always had a goal to walk a mile a day and were reasonably concerned about achieving said goal. Be adaptive, set the goal, and safely work yourself up to walking a mile a day. There will be days where you can achieve your mini-goals and days where you should honor your limitations. It may take you all year to work up to that mile, but what will you learn about yourself in that time?

Two things you will hopefully learn in the year: one, that you aren’t as limited by your illness as you thought. Two, you are more resilient than you might previously give yourself credit. Goals, if they are worth it to you, take time. Try not to feel discouraged if you find it takes longer than expected to reach your goal.

If you assessed your abilities and found yourself more capable than previously thought, like me, then take time to set goals and find your true limitations (in a healthy manner). Honor what your medical professional says, follow their guidelines, and work to break free of any mental blocks you’ve placed on yourself.

You may find that you are better managing your illness because you are allowing yourself to be more aware of what you can and cannot do. The benefits of goal-setting and working towards those goals are numerous and worth doing. 

The key is to take a chance and figure out where you stand in your illness and deciding if you are honest with yourself. Once you’ve done so, you never know what you can achieve in the new year.


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identifying-wellness-changes

Identifying Wellness Changes

So often I get caught up with what’s going on in my life, at the moment, that I don’t take the time to step back and appreciate my development as a person. It’s easy not to recognize how we’ve grown as a person, partly because we are too close to the situation.

Or, more often is the case for me, I don’t reflect on the changes I’ve made and assume I am staying in one place. I presume that I am not experiencing growth because I don’t think of identifying my maturation. If I am bogged down with routine, I take for granted the moments where I behave differently than in the past. I miss seeing the benefit I am getting from my wellness changes.

It’s essential to appreciate the changes we’ve made, no matter how minuscule they might seem, because any change in a positive direction is a great start.

Identifying Changes

Back in February, I devoted a whole month to self-reflection. If we want to see what changes we’ve made throughout this year, we have to dive back into the self-reflection process. Hopefully, this will be less painful than a full-assessment of ourselves. If we feel like we haven’t done a lot of internal work this year, there might be a hesitation to self-reflect because of shame.

Unfortunately, we’ll have to push through those feelings of shame. At the end of the year, take a few moments to reflect on the positive. When your mind drifts into negative thinking, find something positive you did recently, and see what motivated you to do it. 

How will you know a change you made throughout the year is a positive one?

When making wellness goals, we often say things like: I want to exercise more, eat healthier, feel more satisfied, etc. And we’ve been through this cycle before: after making changes, two things happen. We “Fail,” as in, we give up. Or, we “fail” because we don’t notice changes quick enough, and feel like we are wasting time. 

It’s the lower-case “fail,” that we are examining today. Chances are if you don’t notice any positive changes in your life for the year, you didn’t fail. You just aren’t looking hard enough at what you have done. If you are continuing with your changes, despite not seeing the results that you want on time, consider this: you are sticking with it, and that counts as a success.

The entire point of this blog is tracking my wellness journey with MS as I wait to restart my medication. I wanted to get healthy to help manage my flare-ups and to provide a positive example to Jai. There are plenty of days where I don’t think I’ve made a difference in my life. I don’t see the results, so I assume I am spinning my wheels.

These last two months are proof that I’ve made changes, and the changes are working for me. I wrote about Lytton’s health issues at the end of October, and less than a month later, we had to say goodbye. The week we put him to sleep was stressful, surpassing the week I spent in the hospital utterly clueless about what was wrong with me, pre-diagnosis.

Not counting watching Lytton suffering through the final hours of his ailment, I fell from running the week before, Jai was sick, I had a mild infection, stress of an upcoming trip, and wondering when I would find time to catch up on the blog like I planned. Spoiler: I never caught up by evidence on the tardiness of this post.

When the dust started to settle, about a week or so later, I took a moment and realized something. I did not experience a flare-up. Given the amount of stress I was under, all the various negative moments I experienced, I was relatively calm and no indication of a flare-up.

I was pleased with myself. I weathered a hurricane of adverse events that, at any other point in my life, would have left me feeling defeated. I acknowledged that there are cycles in life where it feels like everything is piling on. I am in that cycle, but it will end, and I have to stay calm until then. I can’t fight life, as fighting will cause more stress. If I remain steadfast, acknowledge the feelings of frustration or sadness as they come up, and keep moving forward, I won’t drown in self-defeat.

Additionally, I experienced relapses for less. Granted, I still have a few days here and there where I want to stay in bed for a few hours over Lytton’s loss, but I know it’s coming more from depression and not from my MS. The fact that I am still managing my MS without medication and not undergoing a relapse shows me that the changes I made are working. 

Hopefully, you aren’t experiencing a down cycle where life is piling on to show you the effectiveness of your life changes. But I hope you take this away from the post: even if you don’t notice the changes working, chances are you are in a better space than you were before you started.


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