Striving for a Better Life by Safely Pushing Boundaries With Myasthenia Gravis

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by Shawna Barnes |

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What do you do when after fighting for years you finally find a medical team that listens and a treatment plan that actually helps? Well, if you are anything like me, you take everything you know and safely push the boundaries as far as you can.

Back in January, I wrote about setting realistic expectations when you have myasthenia gravis. Then, in March, I talked about the tools of the trade that can help make life easier to manage. In May, I wrote about finding and pushing past that imaginary line in the sand in terms of how far I can push my body without triggering a symptom flare. I also discussed how much having a port and regular intravenous immunoglobulin (IVIG) infusions has helped me to feel better. This month, I reflected on the synthetic hormone prednisone, how it has affected my body, and what I’m doing about it.

I’m getting somewhere with all of this, I promise.

What do you do with all of that information you’ve gleaned from self-reflection, feeling better from treatments, and looking for ways to improve your well-being? Me? I put it all together and continue to strive to improve my status quo.

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More good days than bad

For example, knowing that I crave more sweets on higher-dose prednisone days has led me to try calorie cycling. (I alternate prednisone doses at 30 mg one day followed by 40 mg the next day). Basically, my daily caloric goal for mild weight loss of half a pound a week is 2,045 calories, or 14,315 over a seven-day period. On higher-dose days, I consume about 2,200 calories, while on the lower-dose days, I try to stay around 1,800. The end result is a net loss over the course of a week. Stay tuned for the results of this newest test.

Receiving IVIG infusions every three weeks has steadily improved my overall fatigue levels. I am having fewer peaks and valleys with my energy and general strength. This is the first time in more than five years that I’m regularly having more good days than bad ones, as long as I remember to pace myself.

Admittedly, pacing myself is the most difficult part of this journey. When I feel good, I want to do all the things because I have what I describe as “flare fear,” which refers to avoiding things because I’m afraid that doing the thing will cause poor health or require days to recover.

Thankfully, I have a partner who is supportive of my journey to a healthier me and encourages me to push myself. So push I have. Because of all of the above, I was able to push past my usual limits established by my myasthenia gravis and aggravate another of my chronic health conditions this week. I call that a win!

How did I do that? I had an emotionally draining therapy session and needed to relieve some stress. I was sitting in the chair with tears streaming down my face because I can’t just “big ugly cry,” as it leads to literal breathlessness. So my husband suggested that we walk the driveway. I can usually walk a single loop, which is 0.2 miles.

I was feeling better after a single loop, so I told him I wanted to do another one, which we did. I was still feeling OK, so I said I wanted to keep walking but didn’t think I could do another loop. We walked the field by our house instead. Walking the field was too much, but I did get some great pictures of wildflowers. But the extra walking caused the chronic pain in my hip and back to act up. The result was that I was confined to the recliner for the rest of the day.

But you know what? By pushing my physical health boundaries, I improved my mental health in several ways. I felt better at having a healthy outlet for the pent-up emotions. I walked twice as far as I had previously, since moving to Wisconsin and beginning the treatment plan I’ve been on since January. And let’s be real, the mental win of being able to do more physical activity was huge.

I safely pushed my boundaries and ended up moving that line in the sand back a little farther. I had a couple recovery days. And I have a plan going forward for how to keep up this momentum. Those realistic expectations were adjusted. Everything is a moving target that I am constantly reevaluating and adjusting based on my most current data.

Some folks might grow frustrated with tracking all of these different things. But it motivates me to keep pushing for a better life.


Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.

Comments

Carol Curwick avatar

Carol Curwick

We as in my husband and myself have experienced (boundaries, exercise, fatigue, intravenous immunoglobulin, mental health, prednisone) and had a thymoma surgery that had wrapped compleiely around my chest and we did radiation to reduce the size then after 30 days at home had the surgery which resulted in the removal of half of my right lung. It's been over 5yrs, With at least 10 near death experiences.
We now are getting ready to recieve a 2nd doe of VYVGART, Which was just approved in Dec of 2021. No longer doing ivig as this new one is supposed to have better results, And boy do we need better!!! After over ten months of continuous hospitalization, and every bad symptom from that long of a stay, plus several ER experiences, With hospitalizations afterwords.
We have come to the realization that we can't live as before, so we have to just live for what we can achive going forward. P.S., This is Carols husband typing this as she can't at this time!

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Shawna Barnes avatar

Shawna Barnes

Thank you for sharing your experiences. I hope that Carol is feeling better! I had a thymectomy in 2019 and am seronegative so unfortunately Vyvgart is not approved for use for me and I don't know that it's made its way to the VA yet. - Shawna

Reply
Robert Burns avatar

Robert Burns

Carol, I hope the Vyvgart works much better for you. It sounds like you've had a very rough time.

I've been on IVIG, 4 times every 28 days, for the past eight years. I get 12 pretty good days out of every 14, on my treatment cycle.

I just offered up a prayer for you that Vyvgart materially improves your daily life. Let us know how it's working after you've had enough doses to know.

Robert

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