parenting-with-a-disability

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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Immune & Energy Booster Turmeric Shots

This post was originally published in December 2017.


Several years ago, I participated in an intensive yoga course, which required attending classes at a local studio almost daily and first thing in the morning. This was before my diagnosis, but just after I experienced my first flare-up, so fatigue was an issue for me at the time.

I was complaining to another student while we were waiting to step into the studio about how tired I was. We were doing a strict detox diet, and coffee was not on the approved list. She pulled this small bottle* out of her bag and handed it to me.

Her: “It’s a turmeric shot. These things are great natural energy boosts.”
Me: “Turmeric? As in the spice?”
Her: “Yeah, have you heard about it? It’s got all these great ayurvedic properties, but it’s been found to boost your energy naturally. It’s more potent than caffeine.”
Me: “And it’s safe?”
Her: “Absolutely. It’s all-natural. Just try half of it and let me know what you think after class.”

I tried it, and she was correct. I felt extremely energized. I was almost shaking to get the class started, that’s how powerful it was for me. I will add this note: it was the first of any sort of energy drink I had in weeks. We couldn’t even drink green tea, so the results might have been slightly skewed due to my body just going into overload.

I didn’t get a chance to follow up with the turmeric as an energy booster after that experience. But it stayed in the back of my mind. When I read about the benefits of turmeric in the diet for brain health and as an anti-inflammatory, I decided to look back into it. It might be worth trying to help manage my MS.

The Health Benefits of Turmeric

What makes turmeric the wonder spice is the curcumin. Curcumin is believed to be a beneficial supplement to fight Alzheimer’s due to its anti-inflammatory and brain-boosting properties. It also is found to have cognitive-boosting abilities, though this needs to be researched further. It can also help prevent certain forms of cancer.

These two things alone: inflammation and cognition are issues a person with MS deals with daily. I am not advocating forsaking all other forms of MS therapy. I am adding it to my daily diet to supplement traditional forms of MS therapy. And as a runner, the anti-inflammatory benefits are beneficial to recovery.

But the energy/metabolism and the immune benefits? This becomes a universal appeal for daily consumption of turmeric. Even if you don’t have MS, having a natural way to get more energy and boost the immune system will be beneficial to your health. It may not cure a cold or prevent getting one, but it will give you that extra boost your body might need.

Making My Own Turmeric Drink

Before removing sugar from my diet, I found it harder to stomach turmeric even in a drink form. The taste was too weird, and I needed something sweet to help cover it up. It’s how I handled flavors I didn’t care for in the past: add sugar to make it more palatable.

A few weeks after quitting sugar, I bought several shots of turmeric for an early morning road trip I was making to Tennessee. I took some sips and found that I actually enjoyed the flavor and felt quite the energy boost. Sugar struck again as a ruiner of flavors. Now that it was out of my system, I was able to enjoy something I previously disliked.

But what took my breath away was the price per bottle. I could drink one bottle per day for the health benefits, but my wallet wasn’t going to be fond of the ~$6.00 per 3 fl oz. I knew I could make it even cheaper.

I found a couple of recipes online. However, they didn’t adhere to the vegan diet. They used honey or some other animal-based additive. I decided to create my own recipe. Below the break, you will find my recipe and some ideas for modifications.

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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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surrendering-control

Surrendering Control

As a child, I heard about the importance of surrendering control, especially how it pertained to a higher power. While I spoke a bit on Monday about the importance of giving up control, this post is for those of us who cannot stand the idea of giving up control. When I heard the words “surrender control” growing up, I found that I would internally shudder at the thought. The word “surrender” in this particular context still irritates me years later.

I still haven’t quite identified why I hated the thought of surrendering control, even as a child. I suspect it has something to do with the abject vulnerability that comes from giving up control. I saw that the moments I was most vulnerable, I was also treated as though I was weak. So any display of vulnerability was a display of weakness. Surrendering was the ultimate sign of weakness.

Additionally, growing up, you are beginning to assert your independence. Being told to give up control, just as you are starting to come into control of your own life, feels like so many steps backward. I learned to associate giving up control as infantilizing. I could not differentiate between the “positive” forms of giving up control like going with the flow, and the “negative,” which was micromanaging all aspects of my life.

And so I became a control freak.

How to Give Up Control when You Can’t

It’s all well and good to be told to give up control. It’s one of those “easier said than done” situations.

But when it comes time actually to try and give up control, it can be difficult. I think for those of us who need to be in control are keenly aware of how out of control the world is, so we cling to whatever means to maintain a sense of order. We find areas in our lives we can manage, and even if we manage it poorly, there is some stability in the belief we are in control. 

Humans are masters of deception. Especially self-deception.

So, how do you surrender control?

Not easily, and I wish I were joking about that. This would be one of those areas where, if we could snap our fingers and fix everything, we would do it. I thought if I reflected on it hard enough, it would happen.

But it doesn’t work that way. Giving up control isn’t just a thought-based exercise. It requires active participation. I was seeking for something else to take control from me, even though it wasn’t for it to take, nor was I willing actually to give it. I couldn’t expect anyone, or thing, to take control. 

I, and I alone, could give up the control in my life. But I am like an addict, and to be sure, control is addictive, and addicts struggle to give up their drug of choice. While micromanaging my life brought on only stress, frustration, and health problems, I was unwilling to give up my “drug.”

Once I realized that I was responsible for my own burden, that the only way I would regain control in my life is to let it go, was I able to make a choice needed in the situation.

Now, if you have a higher power, you might say this: my teachings tell me to give up control. Many allegories teach to give to your higher power. Yes, but make sure you are actively giving up control and not expecting your higher power to take control from you. This is the trap I fell into. Make them your focal point, but remember that only you can say “I am going to give up control in this area of my life.”

Often, meditating or praying to that higher power or the universe can give you the strength you need to do so, so keep that in mind as well.

But it really has to be your decision to let go. Acknowledge that you are not in complete control of your life, that you are going to go with the flow, and accept whatever life hands you as graciously as possible.

Clear Head; Healthy Decisions

Control freaks: do you find that your head gets so cluttered with all that you have to do? All that you have to remember? All that you didn’t do, and now you feel frustrated?

The advantage of surrendering control is that it gives you a clearer head. No longer do you have to think about all the parts of your life you need to manage. You get a chance to prioritize what you can control and what you can’t. It allows you to reflect on your life more objectively.

Remember when I talked about not having expectations and accepting everything? No longer do you place expectations on your higher power or life to take control from you (you’ve given it over freely), and therefore, you can accept anything that comes your way. Often we get so wrapped up in controlling everything that we miss out. We might miss an answer we were waiting for, or an opportunity we’ve been wanting because it does not fit into the framework we’ve set up for ourselves.

We can make healthier decisions when we are in an objective head space. We can see what we need when we need it, and why we need it when we aren’t so focused on the minutiae.

Deeper Connections

Seeking a deeper spiritual connection with your higher power, the universe, or life? I found that once I gave up control in my life, truly gave it up, I had a deeper spiritual connection to those around me and the world at large.

I used to get so focused on the minutiae, but each time I slowed down, took the time to relax and go with the flow, I felt more at ease with myself and my placement in the world.

I also find that my compassion deepens for others and myself. My resiliency increases, and I am more accepting of what happens to me and around me. I am more willing to stand up for myself where I never could before, and be selfish in healthy ways.

Once I gave up control, I felt freer and in control, rather than out of control like I assumed I would feel.

Taking the Right Amount of Responsibility

Just as a reminder, when you give up control, you are still responsible for what happens in your life. You might be waiting for an answer, so what happens between asking the question and receiving that answer is your responsibility. We sometimes use giving up control as an excuse to sit around and be inactive. Instead, we should continue to be proactive in our lives. Seek other answers while waiting for a specific one.

Sometimes we don’t get an answer, or it’s not the one we want, and that’s okay. Consider the timing wrong, and ask again later. Look at it as a roadblock, and find a way to adapt around it.

Whatever you do, when you surrender control, view it as a chance to be more free and active in your life.


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Practicing Mindfulness with a Chronic Illness

I’ve mentioned mindfulness often in passing on the blog throughout the year, but I haven’t devoted a full post to it. For August, I want to celebrate all the small victories we have in our lives and one way to recognize them is through the practice of mindfulness. Mindfulness is an easy practice for someone with a chronic illness. Mainly because we are mindful without realizing it: daily we observe our bodies, how the body reacts (or does not react), where our moods are, and what we need to do to make the day manageable.

If you’ve engaged in mindfulness practice without realizing it, let’s take some time to focus it towards our emotional health. You’ll find it will help you manage your mental and physical health along the way, which complements any care your healthcare team recommends.

What is Mindfulness?

What do you think of when someone says “let’s practice mindfulness”?

You might envision a person in yoga class, or a Buddhist monk sitting cross-legged with their eyes close. Yes, these are classic examples of mindfulness, but it’s not limited to a form of Eastern philosophy. If you hold to a particular set of beliefs, you might be afraid that practicing mindfulness comes into conflict with them. I can assure you that mindfulness does not conflict, especially if you strip it down to the very basics.

If you’ve sat in a quiet moment, speaking to your Higher Power, that’s mindfulness. If you’ve ever visited a therapist and they wanted you to focus on the moment, that’s mindfulness. If you sit back and observe the world moving around you with no other thoughts than the present, that’s mindfulness.

Mindfulness, very simply, is inhabiting the current space you are in mentally, emotionally, and physically. It does not need to be attached to yoga or meditation. It is observing the moment.

What are you doing right now? Are you reading this post on a phone/tablet or your computer? Are you sitting down or standing? Are you fully engaged with this post or are you multi-tasking? Sit for a moment and think about what is going on right now while you read this.

Mindfulness observes the physical actions you take, the thoughts you think, and the emotions you feel. Often we get frustrated because we might try to sit for a session in mindfulness and our minds wander; something itches; or if you are in the middle of an exacerbation, you focus on that.

All of those “frustrations” are happening at the moment, and therefore they are a part of it. Ultimately, there is no right way to practice mindfulness. If you are not focusing on the past or the future, you are being mindful of your moment.

The goal in mindfulness practice is to keep ourselves grounded in our current moments as much as possible. It is meant to release us from any stress we feel about a future project or the shame of a previous social encounter. We often get caught up in things we cannot control (the future) and things we cannot change (our past), that we forget the current moment.

Nothing goes away when we engage in our mindful practice, but we do get a chance to give our mind a bit of a vacation and re-prioritize. It helps us appreciate what we do have, rather than what we don’t.

Mindfulness and the Chronic Illness

I spoke about the importance of gratitude in last Monday’s post. If you are struggling to get into a space of gratitude, mindfulness will help you get there. When we practice mindfulness, we are unconsciously appreciating the current moment. When we re-wire our brains to engage in gratitude more often, we can help manage our chronic illnesses in a healthy manner.

Mindfulness opens us to looking at the moments when we aren’t experiencing an exacerbation or feeling pain. Sometimes we forget the moments when our illness is leaving us alone, and mindfulness refocuses us to appreciate those moments.

Even when experiencing an exacerbation or pain, we can use mindfulness to refocus the pain or discomfort of the exacerbation. It’s not a cure-all, nor will it make the exacerbation/pain go away, but it can help manage both. Many of our exacerbations are brought on by stress, or made worse by it, and mindfulness is a great stress-reducer.

Even if the practice of mindfulness proves to be nothing but a placebo, the placebo effect is genuine , and mindfulness practice is one of those scenarios of “if it works, or doesn’t cause any harm, why not do it anyway?” It may be helping you better manage your pain, it may have you appreciating each day a little more, or it may help you get into space to begin your own wellness journey.

Silver Linings Abound

Through mindfulness can we take a few moments to recognize life’s silver linings.

While dealing with a chronic illness, we must collect all the bright spots we have in our lives. If we focus too much on the illness itself, it can crush our resolve, our ability not to allow it to control us. We experience pain, physical and emotional, so much more when we let our illness overwhelm us.

However, when we are mindful of the present moment, we can see that not everything is grim. Our thoughts may drift to the negative, but if we refocus on the current moment: the current lack of exacerbation, the current lack of pain, the current lack of drama or stress; do we see that we might be in the middle of a bright spot.

We may be more receptive to trying something new in our lives if we become more present. That may be trying a new medication, taking on a healthy endeavor, or allowing ourselves to begin the process of grieving that might be previously repressed.

It’s a chance for us to no longer view ourselves as victims of our illness, but our illness as just one more thing to overcome in our lives. To be clear, our illness can victimize us by taking things away, but we do not have to act like victims. There is a healthy way to cope with our darker emotions and thoughts relating to the illness, but being unwilling to make healthy changes is not the way to go.

Mindfulness can show us the way that we can make changes. We can be healthy. We can control how we respond to our chronic illness.


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