a-test-in-resilience

A Test in Resilience

I am not complaining when I say it’s been a rough couple of months for me. I am just stating a fact. I lost Lytton, re-started a DMT with unexpected side effects, and recently dealt with a training setback. It’s been a test in resilience from October 2019 to February 2020. I think I am passing, but I am still in the middle of it, and I know my perspective may be wrong.

Initially, I planned to make this post about my running. I entered two marathons for 2020: one in March and November. The March marathon would be my first ever, after several years of running multiple half marathons. I made it a goal to qualify for Boston, my college hometown, despite my MS.

#GOALS

Qualifying for Boston is a multi-year goal. I am not fast enough at this point, and I am only able to get myself down to 9:15 minute miles for 3.1 miles. I need to get myself down to 8:09 or faster for 26.2 miles to qualify. The first step is to run a marathon to see if I can even run one, let alone train myself to such speeds.

Granted, training to those speeds wouldn’t be awful even if I never qualify for Boston. It’ll put me into competitive waves with local races, and gives me a healthy fitness goal. 

I chose a March marathon for my first because it’s the last of the season, locally, until the fall due to Southern temperatures. It was deeply symbolic because I ran my first half marathon at this race in 2013. It’s also a day before the 2020 Olympic trials. All signs pointed to this being a perfect test run on whether I could even finish a marathon.

But by mid-January, I recognized that I was in the middle of a massive setback, and I needed to listen to my body.

Running as Disease-Modifying Therapy

Before I delve into the first setback, I want to talk a little bit about the importance of running to me. I mention it in passing on the blog because I am of two minds about it. On the one hand, I recognize how fortunate I am to be doing it with MS. I know not everyone has the same freedom of mobility I do. I want to be sensitive to that. On the other hand, I want to show that mobility-impairing diseases, like MS, don’t have to stop you from being physically active.

I try to walk a fine line between being sensitive and promoting healthy living. This year, I wanted to explore what running means to me as I train for a marathon and work towards a balanced life with complementary therapies.

Running is my primary form of managing my MS. It is the umbrella that all my care falls under, whether it’s eating or stress-reduction. I am chasing a goal of getting faster in my races; therefore, I make healthier eating choices to fuel my body appropriately. The act of exercising lowers my stress and gives me meditative moments when I am alone. Running helped get me to a physical space where I think Tecfidera will be more effective.

I credit running for balancing my mental health. I know this isn’t possible for everyone, so I acknowledge my privilege. But once my mental health stabilized, I was able to make other changes in my life that benefited how I managed my MS. It is a form of disease-modifying therapy for me.

And then I experienced my first setback.

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What It’s Like: Taking Tecfidera

For January 2020, I committed myself to get back onto MS Disease-Modifying Therapy (DMT) or Disease-Modifying Drugs (DMD). My rationale is that while I am managing my MS well without medication, any DMT provides an insurance policy against disease progression. My healthy living changes were always with the end goal to work as a complement to my DMT. And as a blogger, I wanted to share what it’s like taking Tecfidera as a DMT.

Part of the reason why it was so quiet in January is because I focused on getting onto Tecfidera, managing my self-care, and my regular mother duties.

What follows is a brief introduction to Tecfidera, my experience getting back on it, a comparison to when I first took Tecfidera in December 2014, and my final thoughts on the whole experience.

As per my medical disclaimer, I am not a medical professional, so please take what follows as my personal experience and anecdotal, not scientific fact. If you are on Tecfidera or consider taking Tecfidera, you may find your experience varies from mine. 

The Medication

There is information on the website about Tecfidera, so if you are thinking about taking it for your MS, I recommend going directly to the source for your research. I wanted to highlight information that related to my experience.

Tecfidera is a DMT that is believed to “modulate the immune response to be less inflammatory and […] could be protective against damage to the brain and spinal cord.” It helps keep your body from inflammation, a common problem with MS exacerbations. Biogen isn’t able to pinpoint what about the drug works, just that it helps reduce the occurrence of exacerbations. In a 2-year study, 27% of the people on Tecfidera found their exacerbation cut by 47% (compared to a placebo). 

Note: Biogen only links to two two-year studies.

Some of the known side effects include flushing and stomach pain, usually within the first month of starting the therapy. Flushing can occur anywhere but typically face, chest, and hands. Stomach pain can range from mild discomfort to physical distress. Both of these side effects decrease the longer you take the medication. After a month, the stomach pains typically end, and within several months, the flushing stops. 

Tecfidera is also known to bring on Progressive Multifocal Leukoencephalopathy (PML), a disease that attacks your brain and leads to death if not treated. The JC Virus causes PML. Most adults carry the dormant JC Virus with no ill effects, but taking Tecfidera is known to reactivate the JC Virus. Unfortunately, three MS medications do this. Fortunately, getting PML is rare.

To combat this, Biogen recommends getting frequent blood tests to check for JC Virus antibodies. If you reach a specific number of antibodies in your blood, then there’s a chance you have PML and should stop your DMT immediately. If your prescribing doctor does not recommend regular blood tests, please ask for them.

There are more side effects, warnings, and suggestions related to Tecfidera, so I recommend you check that out here.

Biogen provides patients with a tapering pack when you begin the therapy. This pack includes fourteen 120-mg pills: take one 120-mg pill twice a day for seven days. It also consists of a container with 240-mg pills, which is the normal dosage: you take one 240-mg pill twice a day for the rest of the month.

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Humiliation with a Chronic Illness

I’ve discussed how frustrating it is for me to ask for help, how the act of requesting help is a perceived admission of weakness. I’ve even highlighted the trouble I, we, sometimes have in the act of asking itself. To humble yourself before someone is humiliating, but this is for those without a chronic illness out there: having a chronic disease is humiliating.

Not being able to remember the details of a conversation I had five minutes prior is hugely frustrating, but typical for me. Having to cancel a social engagement because I am too exhausted causes more anxiety than if I went. Realizing that I am having an irrational reaction to a minor situation, but unable to control it causes a lot of shame.

These are the “in-the-moment,” examples of my MS humiliating me. I also have an unknown future ahead of me. While I try to be mindful and live in the moment, there are times where I must confront my future with the illness. I can’t be a grasshopper in my disease and live every day like it is summer. With a little one, I need to mentally and physically prepare for possibilities.

And these possibilities can be humiliating. The idea of asking for help if/when I reach one of these possibilities heightens my anxiety even if it’s all hypothetical right now.

Debilitating Disease

Has something fallen from your grip, and you know it’s due to the disease and not carelessness? Have you used store-provided scooters to get your errands done? Used a mobility cane to help you walk during an exacerbation, or because of damage done by one?

In each of these cases, you may have dealt with strangers’ stares, rude comments, or well-meaning looks from close ones. Humiliation comes not just from the outward expression of the disease, but how the condition impacts our egos. Each time we must compromise to accommodate the disease, there comes a moment of humiliation where we recognize the deteroation.

Intensifying the humiliation are strangers commenting how we should leave the scooters for those who need it; how we need to get out of their way because we’re moving too slow*; or you don’t look sick, so stop faking.

*I had an elderly stranger get snippy at me when I moved too slowly through the aisles in the days after my hospital stay. 

Admittedly, before I got my diagnosis, I did the same thing. While I kept my thoughts to myself, I often wondered if a person using a scooter or handicap placard needed them. Post-diagnosis, I am more sensitive to the fact that disability is invisible, and I shouldn’t judge strangers for using the tools available to them.

Most of us have experienced some negativity surrounding our illnesses by strangers. When these moments happen, like when the man got mad at me for being in his way at a store, it causes intense feelings of humiliation. It makes it hard to want to ask for help or take advantage of the support available to us.

Chronic Illness: the Humbler

A quick disclaimermy MS/chronic illness looks different from others. It’s the nature of autoimmune/chronic disease: each case is distinctive. I do not have to deal with the same issues as others, and I may never have to experience the same problems, but there is no guarantee the direction my MS will take. I may get worse; I may stay the same; I may get better.

I see my neurologist every year. At this point, it’s a simple check-in with my health. They like to know if I am getting worse or staying stable with my MS. Right now, I am maintaining, so it’s always a quick session. But the questions the neurologist asks are the same, and each time I go in, I am afraid of the day I have to say “yes,” to some of them. 

The question that scares me the most is: “do you have any issues controlling your urine?” My neurologist wants to know if I am incontinent, a symptom of progressing MS. I can continue to answer “no,” but there are moments in-between appointments where I am worried about my control. It might be symptomatic of my MS, or the fact I gave birth

Being faced with that question each time I see my neurologist is embarrassing, but I must be honest in my response. With incontinence affecting 80% of MS patients, there’s an excellent chance I will start experiencing it in the future. The day I answer “yes,” is the day my neurologist and I know my disease is progressing.

Knowing that there’s a chance I will need to wear urine control aids is humiliating. Let’s be realistic: the day I realize I need to start doing so is the day I have an accident. Hopefully, not in public, but it could happen.

Don’t Be Alone

In our most intense moments of humiliation, there’s a desire to isolate ourselves. Please avoid doing that as much as possible. Ask others for help or find ways to adapt to your illness as much as possible. Reach out to others for comfort, so you don’t feel alone.

I’ve said it often before: the chronic illness is isolating enough, don’t allow yourself to become further isolated.

Help is Temporary (and That’s Good)

If it helps you, remember this: everything happens in cycles. Life is one big cycle. Our exacerbations occur in cycles. You may be in a period where you need a lot of help, but it might be temporary. You may not always need as much support. You’ll figure out a way to adapt and do things on your own.

Keep that in mind if you are afraid to ask for help: this may be a short cycle, and you may not need to keep asking for help. While it is humiliating to ask, it will be a blip.

Chronic illness is humbling. Asking for help is humbling. But remember, acknowledging both and not giving into the isolation shows your resilience. The disease takes so much, don’t let it take what makes you durable.


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Is a Higher Power Necessary?

If you don’t have a higher power or belief system, is it necessary to have one to help manage your chronic illness?

No. No, it is not necessary.

If you have a higher power and feel satisfied, then this post is not for you. This is for the small percentage that are either ambivalent about their beliefs or actively do not believe in anything. This post is for those who have to navigate the all-too-familiar field of well-intentioned family and friends who say, “I will pray for you,” or “if you believe in this higher power, you will be healed.”

These forms of unsolicited advice can raise feelings of misplaced shame, put us on the defensive, or create an awkward interaction. If you find that you navigate these scenarios with ease, then this post may not be for you.

Instead, this post is meant as comfort for those who may have recently de-converted or questioning, and emotions might be rawer.

If It Isn’t Broke…A Disclaimer

The summary of this post is this: if you live without a higher power and that works for you, then do not let yourself get distracted by others telling you that you need one. Only you know what works best for you, and if you find more comfort outside of organized belief, then embrace that comfort.

Once I de-converted, I found more peace in my life. But it took a long time to feel comfortable with that peace. There are still a lot of raw emotions I am working through, so sometimes hearing the language can cause me stress and shame. 

I’ve learned that I need to accept the words and intentions of others with grace, not resentment or shame while standing firm in my decision.

The Distraction of a Higher Power

Most of the time, when people have a higher power or organized belief system, it is a built-in source of comfort. If you need a distraction, guidance, or a focal point, your higher power can provide that. Because of this, often for others who have a higher power, they want to share the comfort and peace they get with you.

It works for them, so it will obviously work for you. I am fond of saying this on my blog as much as possible: what works for me may not work for you. The same goes for belief: your mileage may vary.

Additionally, when I hear people tell me that I need to place my concerns in the higher power I deconverted from, it can be painful to hear. It reminds me of the negative experiences I had and pushes me back into a dark place. It puts me into an awkward space of not knowing what to say or wanting to respond sharply. 

Getting told to turn to a higher power becomes emotionally and mentally distracting. When coping with a chronic illness, being unnecessarily put into a space of shame, even if the other person is well-intentioned, is unhelpful.

If you do not believe in anything or think differently, hearing someone proselytize is irritating because you aren’t coming from the same starting point. If you don’t believe in anything, those words can ring hollow and feel like a wasted exercise on their part. It distracts from the opportunity to have a different or more meaningful conversation with them.

Unfortunately, it’s Not About You

When others start telling you what you need in your life, it isn’t about your needs. It’s about them and what they need to do.

When I came to this realization, I found it easier to handle these interactions. When someone tells you they will intercede on your behalf to their higher power, or that you need to believe in that higher power, it’s giving them comfort. It brings them comfort; therefore, it will bring you comfort, so they want to share it. Or they feel powerless, and the idea of appealing to a higher power gives them a sense of helping you. 

Now, I just listen to what they have to say, say “thank you,” and try to shift the conversation to something else. I find it strangely comforting knowing that someone cares enough to share this with me. Today’s climate is rather hostile to outward expressions of faith, at least in my community, and it takes a lot of courage for the individual to put themselves out like that for me.

Consider a Greater Cause

I mentioned this at the beginning of the month, the idea of a greater cause. A greater cause is not a religious belief, but something outside of yourself that motivates you in life. It can be a form of activism, volunteering your time, or a professional or health goal.

Finding a purpose outside of yourself can provide you a similar distraction a higher power gives someone else. It can ground you, guide you, and provide fulfillment. When others ask you what you believe, you can redirect towards this cause if you are open to having that conversation.

It can give you the strength you need to handle the awkward conversations because you do have something equally important in your life.

Know that you possess the ability to decide what is best for you. Others generally come from a well-meaning place when they tell you about their higher power. When they do, know that it’s not necessarily for you, but to provide them comfort. Shift the focus of the conversation away from the topic as graciously as possible, and reframe it as them caring genuinely about you.

It won’t be easy every time, but it might make these interactions less awkward.


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A Higher Power with a Chronic Illness

Approximately 84% of the world’s population is religious in some way. The number may be lower if we compare those who say they are religious, versus those who actively practice. It is safe to assume that the majority of the world has some sort of religious background. For many people, when dealing with a crisis or celebration of some sort, they reach to a higher power. This higher power connects humans to one another, reaffirms the community bond, and provides comfort in times of need. When dealing with a chronic illness, sometimes that higher power provides the strength needed to cope.

For September, the MS Mommy Blog will discuss the advantages, and at times the disadvantages, of having a higher power during a wellness journey. If you have one deity, more than one, or none at all, you’ll find that I will touch upon your situation at least once this month.

A Quick Disclaimer

If I linked you back to this post, it’s because of the following disclaimer.

The MS Mommy Blog takes a strict stance of not promoting one particular religious practice over another, nor will it disparage a specific system of belief. If I take lessons from one philosophy more often than another, it is not an endorsement.

Because this month will have a lot of conversations surrounding religion, I will be as broad and general as possible to be inclusive. If I do use specific examples or terminology associated with one particular religion, it won’t be to promote it over another. This has everything to do with the limitation of the English language and tap into Western cultural shortcuts.

All examples will be done in an honoring way: I will not criticize any particular system of belief. I will, however, address some of the mental traps we fall into as a result of religion, not because of the religion itself. This might be perceived as a criticism, but please do not take it as such.

To be all-encompassing, I will not be using the word “god” in any capacity. Instead, I will use the term “higher power” or “greater cause.” If you have a particular deity, that is your higher power. If you are not religious or an adherent to a traditional belief system, you might have a greater cause that you focus on (see humanism as an example of what I mean).

Looking Beyond Ourselves

Often, at the start of any wellness journey, there’s a call to look beyond ourselves. We might reach out to our higher power to help us start or give us the strength to move forward. Being afraid to try something new, no matter how beneficial it may be, is reason enough to need strength from wherever you can get it. If you are not religious, you may look for other motivations: a child, a partner, or just for yourself.

Whatever the reason, we are looking within to look beyond.

The act of asking a higher power for strength or finding a greater cause allows us to reflect on our life from an objective perspective. We can see ourselves as others see us, and see where we might need an extra boost. Then we can ask for help from our higher power, or see resources related to our greater cause. The act of asking for help is a form of externalizing our desire and can help propel us forward.

I often find that looking beyond myself helps. It’s usually in the form of providing an example to Jai, I see what I want him to do, and therefore, I must model my behavior, so he follows suit. I am looking beyond myself to make changes in my wellness journey, and I find more success because of it.

Finding Motivation Beyond, Maybe

If you grew up in a particular system of belief or are newly converted, you know what works for you. If reaching out to your higher power gets you the answers and comfort you need, then do so. But make sure whatever response you get back is honest and healthy. Sometimes we get a specific response (or lack of response), and it may not be our higher power, but our unconscious getting in the way. That’s the “maybe” in this section’s header.

If you are not receiving comfort or an answer encouraging your personal wellness, seek out a second opinion. Find a leader you trust within your belief community and seek counsel. Understand that they are fallible too, but your higher power should want you to be strong, find comfort, and be healthy. Your leader should help you get a more honest response that isn’t muddled with unconscious and discouraging thoughts.

No Excuses

Here’s where I am going to get controversial: do not use your higher power or greater cause as an excuse not to make positive life changes to manage your illness. Really think about what your higher power or greater cause asks of you. One that wants you to be healthy and managing your illness in the best way possible is reasonable. One that asks you to stay stagnant and be unhealthy may not be your higher power, but your own unconsciousness afraid of change.

If you find that after speaking with your higher power, it gives you an answer to stay unhealthy, you may need to seek outside counsel to get to the source of that answer.

Higher Power & Chronic Illness

So how can a greater cause or higher power help you with your chronic illness? That’s something we’ll be examining for September. You may have one, and you may not. Whatever works for you and keeps you motivated and feeling happy – that’s what matters most.

Your wellness journey is your own, and ultimately, you need to stick with what keeps you moving forward healthily.


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Featured photo credit: Canva