Myasthenia gravis often requires me to adapt my expectations or approach in several ways. One aspect I am currently struggling with is the paradox of cyclosporine, which eases my symptoms but also introduces some unforgiving side effects. Before starting cyclosporine as my long-term immunosuppressive treatment, I was considered…
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You never imagine that your life could change in an instant. You never imagine that your “normality” can get turned upside down and spun around like it’s been let loose in a washing machine. You never imagine that you will be told by doctors that they don’t know what more…
I am quickly approaching my mid-20s, and one truth I have learned from life thus far is that hardly anything is black and white. When you form part of a niche community, like the myasthenia gravis community, you learn what it feels like to constantly battle life in a…
There are not many perks to living with myasthenia gravis, especially since it can be difficult for others to understand the fatigability and variation in our symptoms. However, there are also not many things that do not benefit from a having a good sense of humor. The symptoms of…
There are few things as complicated and challenging as interpersonal relationships. The older I get, the more difficult it is to stay in touch with those I once considered to be friends. Supporting someone with a chronic illness will never be an easy task, just as living with one is…
We express ourselves in many ways: through our hairstyle, our clothing, our facial gestures, our voice, and how we choose to articulate our thoughts. One symptom of myasthenia gravis is dysphonia, which results in an unreliable and fading quality of voice. Another symptom is having difficulty with speech, which…
In Sickness and in Health
Falling in love is never quite as graceful as they make it out to be in the movies. In reality, things tend to get awkward, uncomfortable, and sometimes downright confusing. When you add chronic illness to the mix, dating just seems to get additionally complicated. I met my boyfriend a…
The Value of Our Time
When you have come to survive a few brushes with death, nothing becomes more evident than the value of your time. To most people, the 24 hours in a day just are not enough. Chronically ill people are forced to be both full-time patients and full-time functioning human beings, meaning…
When you take numerous medications a few times per day, you learn to understand that these medications may have side effects. Luckily, you are usually able to anticipate these side effects’ arrival, thanks to an educational pamphlet accompanying your box of pills or an informative Google search session. Prednisone…
I have often felt that despite not having a terminal illness, I was in a certain way born to die. I also believe this is the reason I am able to live a happier life than most of my healthy peers. I know how important it is to appreciate…
Recent Posts
- The thought of not having myasthenia gravis does not bring me peace
- Zilbrysq’s safety, efficacy in real-world study mirror trial findings
- Vyvgart may fill gap in medications for juvenile MG: Real-world study
- Antibody levels may help track disease severity in children with MG
- I’m learning which conversations are worth having, and which ones aren’t