Lifestyle & Blogging

The First Couple Days…Weeks…Months…


This is a conversation I wish someone gave me when I first received my diagnosis. While it is tailored specifically to MS, I hope some of the thoughts are universal enough for any difficult medical diagnosis.

CW: Discussion of suicide, self-harm, and depression within this post. If you or someone you know is feeling suicidal, please contact Lifeline at 1-800-273-8255. If you are in crisis, text CrisisTextLine to connect with a crisis counselor. You are not alone.


After I got my MS diagnosis I went through a period of shock and relief. I was shocked that it was MS but relieved to finally have an answer. Ultimately, the shock overpowered the feelings of relief and I found that my emotions spiraled out of control.

I don’t remember the first couple days, I think I was numb from trying to process the information: it was like finding out a loved one had died. Every couple of minutes I’d get distracted enough to forget, but as soon as I turned my mind to it, my heart sank and it felt devastatingly fresh again.

The numbness I felt was me unable and unwilling to process the news. 

I was aware of MS since High School because my art teacher had it. I remember my mom telling me about MS, explaining why my teacher may seem fatigued or snappy towards the end of an afternoon class. I also remember sitting in the art room, watching my teacher gush about Cezanne and thinking two things to myself: one, “Oh god, I hope I never get MS;” and two, “it would be the end of my life if I ever got it.”

I was wrong on both thoughts. I may have MS, but my life isn’t over.

So You Have MS

Welcome to Club MS where no one wants membership. 

Right now you’re searching online for meaning and information. There is a lot of information out there and I understand that this post is going to add to the noise. I wrote a simplified post about MS, but I recommend checking out the NMSS for thorough information on the disease if you want specific medical details about MS.

I am not going to offer advice on how to cope with the news of the diagnosis, but provide insight to what I went through to normalize your experience to a certain extent. While working through a diagnosis is unique to each individual, there are certain aspects to the process that are universal. You are not alone in this journey.

There’s a good chance you will go through a range of emotions like I did. Hopefully, relief will be one of them because there is a sense of calm of finally having an answer to what is going on with your body. It makes what is intangible – tangible. What was presumed to be just in your head is now externally acknowledged by a medical professional.

These feelings of relief probably won’t comfort you past the first 48 hours or so. But it is something to keep in the back of your mind for later as you move through your coping process.

The next set of emotions may be frustration and betrayal.

I was frustrated that my body was attacking itself but equally betrayed by it. Here I was, at the end of my 20’s looking at a lifetime of disease; where Ash would have to take care of me if I progressed past a certain point; and I would be a physical, mental, and emotional drain to all of my loved ones.

As a younger person, the idea of having a disease or getting sick was something that happened to other people. I took what was presumed perfect health for granted. I remember thinking to myself: I lived my life relatively well, I was a good person, I did what I was supposed to, why is my body punishing me? What wrongs was I atoning for? This does not happen to good people.

I sank into a deep depression. I was completely lost about what I was facing, how I would face it, and how I would get through it. I felt completely selfish because I could only think about myself. I couldn’t and didn’t want to think about anyone else.

I went to a very dark place and stayed there for several months. There were moments where I was suicidal over the whole situation. If I killed myself, I would regain control of an out-of-control situation. More importantly, I would be able to remove myself from Ash’s life and no longer be a burden to him. The sooner I did it, the sooner he could move on and find a healthier partner.

I never acted on it, never made any serious plans. Instead, I pushed it down the road: if I start to be a burden for my loved ones – then I would do something about it.

I am not saying, nor am I recommending entertaining these thoughts, but by pushing the desire back it helped give me the clarity to healthfully resolve my thoughts on the matter and get to a point where suicide was no longer a viable option at any point in time.

It was around this point that I realized I was going through a form of grieving after getting the diagnosis. Grieving a medical diagnosis for yourself is, in fact, normal. It helped contextualize what I felt in the months after my diagnosis. It also helped me move through the stages more effectively because I now knew what I was experiencing was normal.

Continue reading “The First Couple Days…Weeks…Months…”

Personal Motivation

Love after Baby

Happy Valentine’s Day!

Today’s post is about how Ash and my love evolved since having Jai. While we never made sweeping romantic gestures before, how we overtly express our love has changed since adding Jai to our family.

It has been an adjustment that we are still working through because that’s how relationships work.

The small gestures…the simple ways to express our love for each other has always been important. That hasn’t really changed because they are easy to do. When Ash sings a made up song to me or buys my favorite candy (back when I ate sugar), it makes me feel special. He loves it when I scratch his back without being asked or bring him his favorite custom drink after a run.

I find that we count on the simple stuff more as gestures of: “I recognize how you enjoy this and want to do it for you because it makes you happy” moments.

While it isn’t necessary to go overboard with our overtures of love, it is important that we don’t get complacent with our actions. Complacency leads to taking each other for granted, something neither of us want to do. How we express and strengthen our love will change as Jai gets older and as we age, so anything we come up with will evolve as time goes on.

Maintaining flexibility and understanding that our time is more precious has helped us have compassion for ourselves and each other.

Making Time

It takes the fun out of romantic spontaneity, but Ash and I have had to schedule our time together.

It doesn’t have to be time for that, but just spending time together.

We fell into a schedule of spending time on the couch after putting Jai to bed by chance. I am sure most relationship experts would say that the time we spend on the couch watching our shows or playing games on our phone is not quality time, but Ash and I would argue that it is quality time.

Our relationship has always been one of being near each other. We don’t have to talk about anything – we don’t have to be doing the same thing, but we find contentment in being near one another. Being able to reach over and touch the other’s arm when we need contact is worth more to us than an hour-long discussion about our day.

That isn’t to say that we don’t talk to each other, we do. But all our time spent together does not need to be at full engagement.

Prior to having Jai, we’d do more active things together: we’d go out, have friends come over, and other things couples without children do. That has had to change, obviously, and we’ve become more homebodies because of it.

This wasn’t a hard adjustment for Ash – he will proudly tell you that he’s a misanthrope and he likes that we stay in more. I am the more social one of the two of us, so when there’s an opportunity to go out with friends I tend to take it while Ash stays at home with Jai.

He loves the opportunity to spend alone time with Jai since he works all day. I just appreciate the break.

That said, we do try to schedule at least one day/evening a month away from Jai. My parents are gracious enough to watch Jai while Ash and I go do something fun: dinner, movie, play, or just walking around downtown. Those moments, because they are more infrequent, are savored because it allows us a few hours to be a couple again.

We still rush home to Jai because we love spending time with the little guy, but we also feel re-engaged with our relationship after a few hours alone. It gives us a chance to show how much we appreciate spending time together when there’s some effort involved.

Listening to Each Other

The other thing that changed a lot for us is that we listen more.

We talked, compromised, worked through our issues prior to Jai, but it has become more imperative that we take the time to listen.

If I’ve had a particularly stressful day, I preface anything that I need to discuss with: “now, I am not mad at you, but I may need to raise my voice in your general direction. Do not think I am yelling at you.” He understands that in that moment I need to vent about something and it needs to be heard by an adult and not just one of the cats. He will sit, listen, and then ask if I want advice or input.

Some days I want input, most days I am just venting, and I already have a solution worked out.

Likewise, when Ash needs me to listen to him, I try to hear him out. I do feel like our relationship is a bit lopsided because almost nothing bothers Ash. When he needs me to listen – I try to be there for him. Most of the time he has a great idea on how we can parent Jai and so I try to incorporate it into my routine.

Little One Makes 3

We’ve had to incorporate Jai in how we express our love for one another: in the moments that all three of us are sitting together reading a book or playing a game Jai has invented, I feel more connected to Ash. It may be biological, but when I watch him care for our child – I can’t help but feel a deeper connection to him.

And in those moments, I try to let him know how much I love him by giving him a quick peck on the cheek, a simple touch on his arm, or a hug (which Jai loves to join in). Growing up my parents would make a “Debbie sandwich” where they would hug each other while holding me between them. Those were always my favorite because as a child – I could feel both my parents love for me and their love for each other in that moment.

We try to show our love for each other in front of Jai because it’s healthy for him to see a loving adult relationship. We want to model healthy love so when he grows up, he will foster a similar relationship with his partner and feel comfortable coming to us for advice.

The Takeaway

For Ash and me, we have come to a place where we appreciate the time spent together and don’t rely so much on how it is spent together. Being physically close to one another is so much more important to us than anything else, which is why going out on frequent dates isn’t as much of a priority.

If there was ever a moment where one of us was unhappy with the situation (bored with another night in, needing to do something different, etc.), we make sure to talk and be open to listening. We may have to compromise because going out takes more logistical work with Jai, but at least we feel heard and a solution is at hand. Sometimes the simple act of talking is enough to soothe any needs.

It hasn’t been easy – most relationships, romantic or otherwise, are difficult to some degree. But knowing that I get to spend the evening with my best friend and go to bed beside him always warms my heart and makes me feel full. I am very fortunate to have found a person who appreciates the same things I do, has similar needs and desires, and wanted to share their life with me. And helps make cute babies.

And since I know he’s reading this: Ash, I love you. Happy Valentine’s Day.


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The Check-In

A Different Type of Love

A few months before I met Ash, I had an acquaintance confide in me that they didn’t love their partner as much as they loved their newborn.

The love, they said, for their partner was replaced with a deeper love for the baby.

They felt guilty by this shift in the relationship, but knew that this was necessary to being a good parent.

I wasn’t sure how to respond because I wasn’t a parent and I wasn’t in a relationship, so I did what any awkward single person would do: I nodded and affirmed that they had nothing to feel guilty about. It made perfect sense to me: love for a partner could easily be replaced with love for a child. Biologically, we are geared towards wanting to care for our offspring more in order to ensure its survival into adulthood.

They were talking about simple biology and I had no reason to disagree. I asked if they told their partner about this shift in relationship dynamics. They hadn’t at the time, but that was a very difficult conversation, so I didn’t blame them.

Now that I am nearly a year-and-a-half into parenthood, I remembered our conversation: the aquaintance wasn’t wrong about the shifting love. The love I have for Jai is deeper than the love I have for Ash, but it is a different type of love.

I still love Ash deeply, more so every day because of all that he does for his family, but the love I have for Ash is completely different from the love I have for Jai.

Different Types of Love

Psychologically speaking, there are 7 different types of love. For Ash, my love is more nuanced and a combination of erosludusand pragma. Whereas my love for Jai is storge and therefore completely platonic in nature.

So it isn’t that I love Ash or Jai more/equally I just cannot compare or measure the love for either because the love is so different.

The fact that my acquaintance was concerned about this conundrum is not unusual: there are plenty of forum posts and articles out there where mothers admit to loving their children more than their partners.

Unfortunately, what does not seem to be addressed is that the love between partners and the love between parent/child has to be different. I feel like this is obvious, but there shouldn’t be the same sort of sexual feelings for the child that would happen with a partner.

Continue reading “A Different Type of Love”

Parenting

Managing Parental Time

This is the final week in a 3-week series on parenting observations. Week one is based on gentle parenting, week 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 personal research and conclusions as possible suggestions for others out there, therefore these posts will be as objective as possible. When it comes to parenting: provided 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 judgement.


With my MS, my disability manifestation breaks down into two parts: brain fog and fatigue.

Brain fog makes it difficult to remember to do things, important details, and conversations. Fatigue makes it hard to get through the day, especially after chasing a toddler.

One of my biggest fears during pregnancy was that I would leave the stove on or forget Jai somewhere. That’s how forgetful I can be, “pregnancy brain” aside. Likewise, my MS makes it difficult to make new memories, so I can lose the precious moments that many parents treasure while watching their children grow up.

I have had to reorganize my life to manage my MS and improve my ability to parent. I’ve recognized what I excel at and what my limitations are and changed my routine to better balance the MS and child-rearing.

What works for me may not work for someone else because each case of disability is different, but hopefully it will provide some insight as to how I handle everything. It may not be super efficient, but I am flexible to keep adjusting as needs change.

The main thing that helps me make it through the day with brain fog is managing my time. It’s not a strict adherence to a schedule, but an acknowledgement to the natural flow of the day and accounting for periods of high energy or fatigue.

Managing Time and Priorities

When I feel unproductive, I get depressed. Even before my diagnosis I would get frustrated if I didn’t tick off marks on my checklist. Because I combat daily fatigue, I deal with the reality of not getting everything done which can lead to momentary depression and personal frustration.

In order to prevent these low periods, I must figure out ways to manage my time better in consideration with my energy levels.

I have the most energy in the morning right when Jai goes down for his morning nap and that lasts until he goes down for his afternoon nap. On days that I go for a run or exercise, my energy level might be extended an additional 2 hours, but I can’t count on that everytime. If the run was particularly challenging or discouraging, I may not have enough energy to make it through lunch.

Tracking my natural rhythms, a typical day might look like this:

  • 5-6am: Jai wakes up and we snuggle or slightly doze depending on everyone’s tiredness.
  • 6-7am: Ash takes Jai for play time before Ash needs to get ready for work. This gives me an additional hour of sleep.
  • 7-9am: Go for a run some mornings, otherwise make Jai’s breakfast and let him play until naptime. I typically have more energy during this period of time so I am able to do minor chores while Jai is awake.
  • 9-11am: Jai’s morning nap. If I am particularly exhausted I will use this time to nap as well. Otherwise I will write, clean, or organize the house.
  • 11am-2pm: Jai wakes up and we play, I make lunch, and if any errands need to be run, now is the time we do it. By the time 2pm rolls around, if I didn’t rest in the morning I am feeling very fatigued.
  • 2-4pm: Jai’s afternoon nap. I make sure to take at least 30 minutes rest, but some days I will nap for the entire duration of his nap. If he ends up napping in the car because errands or playdates run late – I do not get a period of rest in and I am usually exhausted by 4pm.
  • 4-6pm: More playtime, I make dinner, and when Ash comes home – we switch so he primarily takes care of Jai.
  • 6-7pm: Ash and Jai spend time alone, playing together. I use this time to rest or work on any minor tasks.
  • 7-8pm: Put Jai to bed.
  • 8-10pm: Ash and I spend time together relaxing before heading to bed ourselves.

As you can see, I’ve worked periods of rest when I can, but I am flexible for the days where I have more or less energy.

I will unashamedly admit to this: on my bad days when I have absolutely no energy, I will make sure all of Jai’s needs are met (diaper, food, water, etc) and put him in the crib with some toys and lie down in another room with the monitor on. If he needs me or gets frustrated with being left alone, I will go immediately to him. But I take this time to recharge even a little so I can make it until Ash comes home.

The key to making it through the day is figuring out how to manage my time. I know when I have the most energy – I know when I need to rest. That helps me figure out when I will be the most productive and I attack important tasks during that time.

But as this article points out, time management only gets you so far.  So it’s a bit misleading to say it’s all about time management: it’s really about priority management. Time management comes naturally once priorities are established.

This is how I go about managing my priorities:

  • Each morning I figure out what is the most important thing I must do and add it to my to-do list with a priority assigned to it. “1” is most important, while “3” is least important. I add all other tasks for the day and assign priority.
  • Once I have established importance of priority, I figure out when during my day I am able to achieve that task. Some things must be done in the morning when I have the most amount of energy, while other things wait until later in the day because my energy level is less important to the completion of the task.
  • I do not underestimate the power of checking things off in order to feel productive. There may be days where I write every single detail of a task down on the to-do list because the only thing that keeps me moving forward are the tick-marks indicating “done.”

    I think one of my favorite apps said it best with this tweet:

If time management isn’t working for you, don’t scrap it completely, but adjust your focus to priority management. Once you’ve figured out your priorities, you can manage the time needed to get those priorities done.

And don’t be afraid of rolling those tasks over day-to-day. They will get done eventually.

The Importance of a Calendar

Maintaining a schedule helps keep things straight when it comes to my brain fog. I have tried physical calendars/planners in the past, and while I love the romantic notion (and flexibility) of them, I find that I am less likely to maintain or look at them.

I always have my phone on me and with Google calendar I am able to share my schedule with Ash. I also love how my Google Calendar integrates with my email, so if I am making plans via email I can click a couple of links in order to automatically add something to my calendar.

Because it’s always by my side I am more likely to look at the calendar, add reminders, and add in events. It is the most effective way to keep my time organized and prevent me from forgetting important things.

I have learned to tell people “hold on, let me put this in my calendar otherwise I’ll forget it.”  I still forget to add to my calendar sometimes, and therefore double-book myself or forget about something, but chances are decreased if I am comfortable stopping everything in order to update my calendar.

By removing the need to keep track of things in my head and placing them externally, I am taking control over my brain fog. While it won’t ever go away completely, I am doing something that is recommended to people without disability and therefore normalizing my actions (and not allowing the disease have control). This helps bolster my productivity and decrease my frustration.

Keeping Lists

While I love to have a digital calendar, I find that having a physical to-do list for my on-the-fly tasks helps more. I do use a digital to-do list for my repeatable daily activities, but as I am going along, I am more likely to write it down on some paper than enter it on my phone.

But list writing can be boring and cumbersome so to make it interesting for myself, I use Knock Knock pads around the house for my various lists. Below are some of my personal favorites:

*I receive compensation for these links.

Like with a calendar, I am no longer allowing my brain fog take control of my life by creating lists, but I am also making my abstract ideas more concrete. They feel more achievable when I look at them on paper.

The trick is to not lose the paper and remember to recycle them.

Remaining Flexible

I always remember that I need to be flexible throughout my day, no matter how well planned I have it.  Some days will be ideal and I will be able to get a lot done and other days I’ll need to accept that I won’t get everything done. Remember that that is okay is key to not getting depressed by low-productivity.

I make sure to build flexibility into my daily schedule.

I acknowledge my fatigue and brain fog by knowing that I might get over tired or I might forget to do something. I work in an extra 20 minutes for a project or an extra 30 to get Jai ready for a playdate because, well, toddler.

What do you do to help keep you focused and manage your disability (or if you don’t have a disability, yourself)? How do you combat the threat of low-productivity? This is something that interests me, so I would love to hear your suggestions and tips. Comment with them below.


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Parenting

Passing Compassion Along

This is the second week in a 3-week series on parenting observations. Week one is based on gentle parenting, week 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 personal research and conclusions as possible suggestions for others out there, therefore these posts will be as objective as possible. When it comes to parenting: provided 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 judgement.


Incorporating compassion towards yourself and your little one will naturally lead to raising a compassionate child, but there are other ways to work compassion into the daily routine. There are a lot of great suggestions out there from various parenting websites. I’ve pulled a list together of my favorite suggestions that I want to incorporate with Jai as he grows up and as reminders of what I can do on a daily basis for myself.

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

Compassion is Nurture not Nature

For some children, compassion appears to be inherent, but for most of us it is something that needs to be taught either by adult example or via life lessons. To best ensure a child becomes a compassionate adult, it is important to teach compassion as part of the growing process. Age of the child (or adult) does not matter, it is something that can be trained at any point in life.

Compassion is not fundamental to being human, but the greater compassion (and self-compassion) a person has, the greater their personal success both personally and professionally.  More than self-esteem, teaching compassion will increase a child’s ability to successfully navigate the world. Increased self-esteem is secondary to compassion in most cases, though it follows closely behind.

Therefore, teaching compassion will be helpful in making the world a better place on a macro-level, but on the individual level for your loved one. The world becomes less harsh, not because of rose-colored glasses, but because your little one does not take adversity personally and takes it in stride. When bad things happen, they are viewed as lessons for growth and not personal insults to their being.

Continue reading “Passing Compassion Along”