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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Parenting with a Disability

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


This is the final week in a 3-week series on parenting observations. Week one is based on gentle parentingweek two is about parenting with compassion, and week three is about parenting with a disability.

These posts are based on my personal experiences as a parent and are not meant in any way to judge other parenting styles or decisions. I am offering my own research and conclusions as possible suggestions for others out there; therefore, these posts will be as objective as possible. When it comes to parenting: if the method isn’t abusive, there really isn’t a wrong way to parent your child. Be secure and do what works best for you and your family and ignore outside judgment.


For many people, parenthood is fraught with challenges: getting enough sleep, the terrible twos, and the need for independence as children grow older. For a select few, there is the added challenge of balancing parenting and a disability of some sort.

Parenting without a disability is difficult, and parenting with one presents its own unique challenges. With some adaptations, parenting with a disability is no harder than parenting without one. Remember: it’s comparing apples and oranges; each type is challenging and straightforward in their own ways.

The key is to know what the limits are, having a support system of some sort to help manage those limitations, and keeping everything in a proper perspective.

In the final week of my parenting series, this week will be based more on observations from my own experience coupled with resources found online. If you are a parent with a disability, you may see some similarities in your situation. Hopefully, this will provide some validation to your experience.

Nota bene: This post will be using the universal “you/second person” pronouns throughout, so it may not speak to your experience directly.

Visible versus Invisible

There are two different types of disabilities out there: the ones you can see and the ones you cannot. For people with invisible disabilities, this can lead to a lot of issues, mainly if a person looks “normal” but uses a handicap parking space. A person does not need to be in a wheelchair, despite the universal logo, to be disabled.

Multiple Sclerosis can be both: for those with PPMS and SPMS (and at times, RRMS), it’s a more visible disability. The person can use a cane, walker, or scooter. It can be abnormal speech patterns, cognitive difficulties, or physical weakness. The outside observer can see the disability.

But many with RRMS don’t display outward symptoms of their diagnosis. Yet, the disability can still be there: fatigue, mental fog, or pain. Flare-ups can cause limb weakness or numbness, which several limits mobility for a short time.

When it is hard to see the disability, it is hard for outsiders to understand the extent of the disability. This can lead to feelings of frustration, inadequacy, and self-doubt by the person with the diagnosis.

Parenting with an invisible disability adds an additional layer of complications: sometimes, it’s hard to make playdate plans because you don’t know how you might feel that day. You may not remember simple details about your child’s life, and therefore seem disengaged with the parenting process from the outside. None of these reasons make you less of a parent, it just alters how you parent.

Ultimately, for those with an invisible disability, they can spend part of their day mentally preparing for outside judgment because people might not know or understand the situation. Outside judgment isn’t a daily occurrence, but when it happens, it stings because you are left feeling inadequate.

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leading-with-chronic-illness

Leading Others Along the Way

On Monday, I discussed how we inadvertently become leaders when we go public with our chronic illness diagnosis. We may not ask, nor want the responsibility, but it inevitably happens. Therefore, we face the questions: should I lead? Do I want to? and what example should I set?

Living with a chronic illness in the United States is becoming a more common occurrence. Because of this uptick, it is becoming more common to know someone affected with a chronic disease. Let’s reflect before your diagnosis for a moment: with your symptoms, did you go online and search for answers before visiting a doctor? If you knew someone with the disease in the results, did you approach them with questions?

So often, when I answer questions about my MS to those experiencing similar symptoms, do I hear how scared they are. There’s a desire for reassurance that they don’t have MS, or that it’s not a death sentence. People are seeking a connection with a person living with an illness that is not in search results. As someone who is out with my diagnosis, my role is to comfort and inform. 

I can, as can you, choose not to take on this role.  

We do not owe anyone answers about our illness. We can choose to refuse to answer, advocate, or inform about the disease. Yet, it is vital to be aware that when we go public with a chronic illness, we will continually field questions until others understand our stance on the matter.

If you choose to take on the role of “local” leader and “expert” on your disease, I wanted to write this post with you in mind. 

What are my Responsibilities?

If you’ve decided to be public with your illness and accepted a leadership role, there’s a set of unspoken responsibilities that come with it. I spoke briefly about this on Monday. I wasn’t aware of all of these responsibilities when I first started blogging about my MS.

As I went along in my journey, I saw good and bad examples of advocacy. As someone out with their disease, it’s imperative you set yourself apart from those who are out for the attention. You will find that there’s always someone out there who is a poor advocate for your illness. They post sensational images on social media, only focus on the negative aspects, and do not take the opportunity to inform others about the disease itself (just that they have it).

They might be considered inspiring by others, too, but look beyond the sensationalism and see the truth: they are attention-seeking and not informing. Be more responsible and educate others about your illness. The ones who are flashy and irresponsible make more work for the rest of us, so it’s important you help the cause rather than hinder it.

I want to share the responsibilities we undertake when we go public with our illness and become a token advocate for others. 

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learning-to-manage-expectations

Learning to Manage Expectations

Learn to manage your expectations.

It’s one of the first things your healthcare specialist says to you after receiving your diagnosis. While my neurologist never explicitly said it to me, it’s implied. Granted, they have high expectations for my wellness, often higher than I had for myself. But when I was in the hospital, pre-diagnosis, that was one of the first things the hospital neurologist said to me in response to my health concerns.

Whether it’s been said or not, it’s something we learn quickly with a chronic illness. We must manage our expectations because we have no choice.

For many of us, we have the following expectations in life: we’ll be healthy, achieve personally, and go far professionally. Often these expectations get scrapped in favor of coping with a chronic illness diagnosis. We might have pain to manage that prevents certain exercises. Our fatigue gets to be too much that we cannot do the same personal tasks we once did. Or our workplace can only accommodate our illness so much before we see colleagues surpassing us.

The expectations we once had slip away and we feel nothing but discouragement. But do we have to let those expectations go?

John Gary Bishop says in Unf*ck Yourself that we should “expect nothing, but accept everything.” It’s perhaps the healthier way to approach the “manage your expectations” conversation. We should scrap all the expectations we have for ourselves and accept whatever life sends our way with an open mind.

This refers to the positive and negative expectations we place upon ourselves.

Why We Set Expectations

Why do we even set expectations in the first place?

In childhood, expectations are placed upon us and for us. Parents might expect us to take on a level of responsibility around the house, or they might share their desire to see us succeed when we become adults. We extrapolate this external expectation and internalize it for what we think we’re capable of doing. Expectations drive our dreams and our desire for achievements.

But rarely are limits placed on these expectations, and as a child, why should it be limited? We imagine being firefighters, doctors, and presidents as our career goals, not wanting to pick between the three. We expected to achieve anything, especially when told we can be whatever we want when we grow up.

Illness or not, we learn quickly that there are limits to our expectations. Not all of us will get into an Ivy League school. We will have to choose between a firefighter, doctor, and president for a career, if only to pick one to focus on at a time.

Life will not work out the way we expected. And then we get our diagnosis.

The Problem with Expectations

The obvious problem with expectations, at least at first, is that we are often unprepared for the letdown. When we don’t achieve the way we expected, it can feel like a failure. For some, that can lead us to shutdown and get stuck.

When we set expectations early in life and achieve them, it’s often viewed as a good thing. Rightly so, you set a path for yourself and achieved your goal. Rich Karlgaard writes about the problematic relationship Western culture has with early bloomers in his book Late Bloomers. Western culture is so hyper-obsessed with the Mark Zuckerbergs, Elizabeth Holmes, and Malala Yousafzais, that it overlooks those who quietly grind away to achieve their success later in life (30s and beyond).

Because there’s an intense expectation for early success, often when we leave high school or college without making some “30 under 30” list, there’s a feeling of panic. This can bring our personal expectations down, or cause us to stall out for a few years.

This is one problem with societal expectations: we misplace expectations on people who may not be emotionally mature to handle the pressure (for reference: Elizabeth Holmes, Martin Shkreli). When young people are pushed to succeed early, they forget that a window does not close as soon as they turn twenty-five. That window for success stays open their entire lives.

If you are alive, you still have the chance to bloom and succeed.

The second problem referenced in Karlgaard’s book is that early bloomers do not know how to handle failure in the same way late bloomers do. When you are a late bloomer, you get used to “failure;” you get used viewing it not as a failure but as a learning experience. Late bloomers are better equipped with managing their expectations.

Learning to Manage Expectations

In life, there are two sets of expectations: “positive” and “negative” ones. This is a false binary, but I am going to use it for clarity sake. Positive expectations are the goals we set for ourselves that we want to achieve. Negative expectations are the times we don’t believe we can achieve it.

At the time we receive our diagnosis, we might drop our positive expectations: career, family, personal goals; and replace them with negative expectations: lack of mobility, exacerbations, and limitations.

For example: before my diagnosis, I intended to become a University professor. After my diagnosis, I dragged my feet because I assumed I wouldn’t be able to handle the rigorous testing due to memory issues. I replaced a positive expectation, “career goals,” with a negative one, “my memory prevents me from achieving.”

If you are like me, a late-bloomer, hopefully you know how to handle disappointment and also view perceived failures as learning experiences. Transfer that awareness to how you view your illness: manage your expectations away from the negative reasoning of “I can’t do this,” to positive “why not try it anyway?”

Often after a diagnosis, we work our way through grieving for our health. It’s a healthy and necessary process, but sometimes we decide to get stuck on the negative thinking. It’s easy to look at all we think we can’t do, rather than focus on what we can do.

But you might surprise yourself if you take a moment to release the expectations you place on yourself. Yes, you may be struggling to walk or get out of bed today because you physically cannot do so, but does that mean you should indulge in the negative expectations of what you can’t do?

No.

There was a time after my diagnosis where I didn’t think I could run or do anything active due to numbness and fatigue. I was in a negative expectation mindset. I actively decided to remove all expectations on myself and said, I can do something. It won’t look the same as a person without an autoimmune diagnosis, but it will be something.

The moment I removed all my expectations (negative and positive), I found I was able to achieve.

I actually found I went farther than before my diagnosis because I removed all expectations I placed upon myself and my abilities. Even when I was “healthy” I had numerous expectations that prevented me from achieving.

This is because when we manage our expectations by removing them, we remove the mental obstacles that prevent us from attempting in the first place. We go out and attempt to achieve without thinking about the limitations we might have. We may still stumble, but it isn’t a failure as much as it’s a learning experience.

If you were an early bloomer, this is your opportunity to bloom once again. Or, as it is in my case, my chance to bloom later in life.


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I-have-a-frustrating-personality

Frustrating Personality; Strong Emotions

I’ve often thought to myself, “Man, I have a frustrating personality.” My combative nature negatively impacted my personal relationships. For a long time, I wanted to change my personality, but I believed when I was told that personality is fixed. If I was a pushy person, then I would always be assertive and no deviating from that behavior.

I am discussing personality because it’s one of those things that I highlighted as a dislike in moments of self-reflection. I can imagine some introverts wish they were more outgoing while some extroverts wish they were more introverted.

Since becoming more self-reflective, I found my personality shifted without realizing it. It’s not a significant shift, but I am noticing that life is a little easier than it once was, despite the chronic illness. I would fight certain aspects of my personality, but now I accept them. I’ve found this openness levels me less stressed and more personally satisfied.

Personality: Inflexiable?

So is the personality inflexible? The answer is yes and no.

Often major life experiences can shift our personality one way or another, but there are core things about ourselves we cannot easily change. An introvert cannot become an extrovert overnight. They might be able to have more extroverted moments, but they may never reach the same levels of extroversion as someone else.

There are five traits to our personalities. These are the dimensions that help define and shape who we are:

  • Openness
  • Conscientiousness
  • Extraversion
  • Agreeableness
  • Neuroticism

Each of these aspects is flexible in of themselves, but the degree of flexibility will vary from person-to-person. As I go through each trait, you may notice that you were once curious about a new venture that you are now extremely cautious. This is where the personality shift comes in and why they can be more flexible than you expect.

As I go through each type, I place no value judgment on the examples I provide.

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