I find that I am still trying to process having this thing called Myasthenia Gravis, which literally means “grave muscle weakness” – a chronic autoimmune neuromuscular disease- for which there is no cure, but treatments are available to ease the symptoms. I went yesterday for my first IVIg therapy and I am glad that is over and done with. Not knowing what to anticipate was definitely stress inducing.
I can advise others so well on coping with their stress and giving their situations up to God, yet struggle with myself. What is the room going to be like? Am I going to be sharing a space with others who are getting IV infusions? Will I get someone who is really smooth with finding veins so the process will feel more like a knife going through softened butter with ease or will the “a small pinch and stick” result in bruising? Thankfully it was smooth as butter. I could not expect a finer group of nurses. Above and beyond I should say, when the nurse enters the room with your pre-meds on a tray singing and dancing, this might not be a bad place to be. Above and beyond in the respect shown to both myself and Jersey Tee. We had our own room, two recliners, a television, bathroom, and a bed if need be.
As if the scene was not cozy enough, breakfast was offered; yes please, bacon egg and cheese sandwich 🙂 Yum! And thank you very much! In the meantime the IV process has begun. Harmless, no side -effects, and my body appears to be handling things just fine. This process of receiving antibodies from thousands upon thousands of donors -purified- and now entering my body, my cells in an attempt to provide relief for a neuromuscular disease that threatens to weaken my muscles daily has been uneventful. I am grateful because my symptoms vary day to day, moment by moment and today I will not have tingling in my hands, but instead will experience items slipping from hands and falling to the floor. If I had to substitute one for the other, I could not choose. The tingling does not wear me out, but is an annoyance, no idea how long it will last or how long it will remain at bay once it has subsided . Dropping items on the floor result in my having to use extra muscles to gather items, whether this takes 2 minutes or 5, my limbs are weakened and spent for the next several minutes often accompanied by nausea and an overwhelming sense of fatigue. My body now screaming at me to go lay down, because to challenge it any further will result in further internal chaos.
I find I get frustrated with myself when the symptoms highlight my inabilities because the list seems to be growing. I have hope that this IVIg therapy will relieve the symptoms to some degree, remission also is not impossible. As the medicine traveled through my veins I drew this picture as I envisioned the medicine getting into my cells.
There were some side effects, but listening to my body has helped ease those and I do believe this medicine is going to help these symptoms. I have to believe that and trust that it will. Faith is no stranger to me, and although I may show frustration through this process from time to time, I will continue to use my humor and faith in God, prayer, love and support from friends and family and the unwavering dedication of my Jersey Tee. I will continue to use my art, photography and writing as a means of coping.
I hope to reach others out there who are experiencing life with IVIg and auto immune disorders……despite how rare Myasthenia Gravis is – we are not alone….please feel free to share your stories.
Deb Correia 3/23/16 ©