Questions

Since initiating my blog, I’ve received a number of questions from readers. I’ve attempted to respond back to each person individually, but I thought it might be helpful if I shared some of the most common questions and responses with everyone.

The question that most often comes up is: “What’s it like to have Myasthenia Gravis?” I’ve covered this topic pretty extensively in my blogs, but the short answer is that MG is different for everyone who has it. My symptoms may be completely different from another person’s symptoms, both in type and intensity. Symptoms can be so severe that a person struggles to perform everyday activities. For example, some have to install a seat in their shower because they can’t stand for the duration of time they’re in there. Others have no problems with their legs, just nuisance symptoms like droopy eyelids. Most are somewhere in between. MG is challenging. Every day it challenges you in trying to do the normal things of life. I really enjoy reading, yet reading is very challenging for me at times. I have double-vision (diplopia) and see two of each letter, one slightly below the other. This gets worse as I get tired. Other people with MG may not experience diplopia, but may have other symptoms. I tend to drag my foot when I get tired. Some people have trouble walking at all and some have no difficulty walking whatsoever. So, the best way for me to respond to that question is to say that it’s different for everyone. If you’d like to see a complete list of possible symptoms, please check out the information on the Myasthenia Gravis Foundation of American website at: https://myasthenia.org/

Another interesting question I’ve received is: “Why do you write this blog?” My reason is twofold. The main reason is I felt this compelling desire to do something after I was diagnosed with MG. I wanted to help other people that may be going through many of the things I’m experiencing. I believe that was God planting a seed. I couldn’t do anything to reverse my MG, but I could use my experiences to help others. I’ve written a few books, so I know my way around a computer. Maybe blogging was a way I could help others. The second reason is it’s therapy for me. I’m a deep-thinker and have a tendency to keep everything bottled up inside. When I write about my journey with MG, I’m able to relieve some of that pressure that’s building up inside of me. For some reason, I have difficulty speaking about what I’m feeling, but I don’t have nearly as much angst if I write it down on paper. I’m not sure why that is, but it seems to work for me. When I write, I have the ability to reread and make corrections in order to provide clarity. When I speak the words, I don’t get a second chance. I produce word salads when I speak. I produce messages when I write.

You should be aware that I’m not a physician or medical professional. I’m just a person with MG. I try not to provide any medical advice other than what is readily available from other sources that discuss Myasthenia Gravis. Instead, I try to focus on my journey and what I’m going through. I have been amazed at the number of people who have commented or written that they are experiencing much of the same and that sometimes my blogs hit home for them. That makes me feel good. It lets me know my efforts are worthwhile. I don’t make any money writing this blog. I write because I think there’s a need for people to be able to relate.

I received a comment from a caregiver asking: “How can I help my loved one with MG?” My response to that person was to be patient and understanding, but at the same time, strong and assertive. What I meant by that is this disease isn’t always easy. Sometimes it really weighs on us and wears us down. During those times, we can get moody and grumpy and more than anything else, we need patience and understanding. At the same time, the worst possible thing we can do is wallow in our own self-pity. For that reason, we need the strength and assertiveness of our caregivers to set us straight and free us from this pity pool. We need you to not put up with our foolishness and to call us out when we’re about to give up. If necessary, that might require you to give us an ultimatum that you will be there for us as long as we are willing to fight, but you’re not willing to watch us wither away and die because we’ve stopped trying. Sometimes we need that kind of tough love. You can assist us in our battle, but you can’t fight the battle for us if we’re unwilling to fight for ourselves. That’s not easy to do. When you care about someone, you don’t want to abandon them when they’re down. Think about it this way. If the person you’re caring for is unwilling to fight for themselves, aren’t they really abandoning you? Providing tough love when we deserve it shows us how much you really care. We may not realize it immediately, but give us time; we’ll come around.

I can’t believe all the emails and comments I’ve received from people who enjoy my blogs. Many are going through some of the same struggles, or know someone who is. Many are experiencing the same ups and downs. The fact that they wrote, that they reached out, makes me realize my blogs are doing some good. I have a few readers who live alone. Sometimes that road is even tougher. I try to reach out to them every so often in emails to let them know they’re not forgotten. I hope I’m making a difference.

Writing this blog is about touching lives. My blogs aren’t perfectly written. My stories aren’t glamorous or exciting. My messages aren’t earth shattering. But my blogs help me and I’m so hoping they help you, too. Thanks for reading them.

I had one person suggest I should do vlogs along with or instead of my blogs. Vlogs are video versions where I would post videos of my messages. If this is something you think you’d like, please let me know.

One more thing. Please share my blogs with family and friends. If you’re not subscribing, please do so. Subscribing will let you know through an email whenever I post a new blog. Thanks again and stay #MGStrong!