I was surprised when the Myasthenia Gravis Association of Western Pennsylvania asked me to share pictures of a banner that I put together for June’s “Myasthenia Gravis Awareness Month” and to share a little about myself.
The second week in January 2019, when I was at work (Secretary in the Post Anesthesia Care Unit at Penn Medicine/Lancaster General Hospital); I was asked to take blood collections to the laboratory. When walking back to our unit, I started to feel like I was walking drunk, it was a strange feeling. I went back to our unit and finished out my shift. I seemed Ok, so I drove home. I went about life as usual, worked the next day and once again when I was asked to get a unit of blood, I had that same sensation. I thought it was from the very bright fluorescent lights, so when I got back to my desk, I called an eye doctor that a friend had recommended before. I told the eye doctor’s secretary that two times I felt drunk while walking under these bright lights, maybe I need new eye glasses. I was surprised to get an appointment the following Friday.
I called off work on that Monday, which I rarely did, and then the next day I went to see my PCP. MY PCP agreed that I needed to be seen by the eye doctor. My PCP noticed that my right eye was drooping and on the left side of my face I couldn’t smile – I had a crooked smile. I told the PCP that I have an appointment with the eye doctor on Friday; she left the room for a few minutes, came back and said “you have an appointment this afternoon with this eye doctor”. So I went and got my eye exam. The eye doctor said this is more than needing new glasses, so he ordered a CT scan, MRI, & a slew of blood work. Before I left that appointment he told me “No Stress”, all I could think was , “well, that’s stress right there”. I had no idea of what was wrong.
I had a follow up appointment the next week. When I met the eye doctor, this is when he told me I have’ Myasthenia Gravis.’ I also found out that this Eye Doctor is also a Neurologist Eye Specialist, so in spite of this surprise, I was glad that this Eye Doctor is well aware of MG.
He said I need to be seen by a Neurologist ASAP. To see a Neurologist was a 6 month wait, but I could see a Physician Assistant in three and half weeks, so I felt at least I have my foot in the door. The Eye Doctor said, “No Stress” again, but told me if I have a hard time swallowing or really short of breath, to get to the emergency room right away. So then I was half afraid to sleep, to not wake up or be on a ventilator, since the eye doctor said this is what would happen – scary stuff!
When I met the Physician Assistant, I also met the Neurologist for a few minutes, where he reassured me that I can count on the Physician Assistant as a resource. This was good to know. I also knew this Neurologist, as he had taken care of our Mom for Parkinson’s Disease.
I was diagnosed with Myasthenia Gravis [CMS/HCC] Seropositive MG. I started with Mestinon, a gradual build-up and several months later Cellcept, as well.
The reason I made this banner, I felt that there was not enough awareness for this ‘mystery disease’ as I call it and it needs more attention. Not me, but MG needing more attention from the medical world, for those that are living with this disease, and the general public. We always hear about other diseases.
I do not like to say it, but medical people have told me that they didn’t know or we weren’t taught this in school – some didn’t know how to spell this Myasthenia Gravis. That started to bother me. I am not here to put down medical folks, especially since I’ve worked in the medical world for almost 50 years. I have to be honest, I had heard of MG, as I used to write in the Kardex’s this terminology, but really didn’t see it too often and didn’t know what it was. Now I wanted to learn about it.
I will give an example, Christmas Day 2019 I had an urgent appendectomy. My surgeon was very much aware of MG and so was the Anesthesiologist (so thankful). Most of my nurses were aware, but some were not and would ask me about it. Because of MG, my stay was a week long, instead of the normal one overnight. When I went for my post-op visit, I met a resident who was soon going to graduate. The resident asked, “so you have MG? “. I replied “yes, do you know much about this?” The resident said “no”; I advised this resident to do yourself a favor, read up on it and study this as well as other not well known diseases, because I am sure you will meet folks along your way. You will have to know what to do and how to handle these patients. This resident thanked me and said he will do this and he was sincere.
I took this banner to the Neurologist office where I go to and I was told this would be hung. This banner is the MG color, made out of placemats sewn together with teal threading. Each snowflake is slightly different, like us MG’rs are.
I had read where, MGA has a butterfly representing “Faith”. I also like to add to the snowflake, an “Anchor” as a symbol of “Hope and Praying for a Cure”.
I hope that this is of help in bringing MG the attention it needs. I believe progress is coming and I pray for a cure and more understanding.
To some I look “normal”, but inside I feel like a bobble head at times. Sometimes if I feel weak, I notice it in my eyes.
I love photography and art. Before medication started, I could not take photographs; everything was doubled so I put my camera away, for maybe 3 months. The Mestinon, started to work and I felt better for a few hours. Soon I was able to hold my camera again.
I love gardening, but now if I get 10 minutes of my hands in the dirt, it’s a good day. I used to spend an hour or so and I always found gardening was such a time for being outdoors and meditative. Working in our butterfly/bird/bee sanctuary now – our son and grandson help me (thankful for this).
I can tell my speech is getting slower in the evenings so, if on the phone with a friend I just say, “I have to call it a night and I’ll get back to you”.