So each time I go to the hospital now I feel like a celebrity. The nurses there are so sweet and I love them so much and they I feel like after 2 years there with them we have been through everything. I mean they have been through all my most personal moments that’s for sure.
But lately, when I have gone it has not necessarily been for any service of my own. I have gone to visit my Uncle or for quick lab work or something of that nature. And while I am there if it’s at the end of my work day I swing by the unit that does my plasmapharesis (plasma exchange treatments). Nearly each time I have gone they are excited to see me and ask where I have been because I have been one of their special cases and because it has been so long since I have been in that they almost worried that something had happened to me, lol. I told them that I working to only have to come in only 3-4 times a years as opposed to my usual 6-8 week intervals and they were shocked. Having just made 12 weeks they were even more shocked and excited.
Then they keep asking me to speak to every MG person that is currently in the room when I drop by. Each one asks me a million questions which I am happy to answer as long as they do not mind. I answer until I noticed they are too tired to answer. I may start giving out my card with my email so that they can continue to contact me afterwards with questions. So far each of them have said they have not had much luck with local MG groups in the area and have struggled getting help with answers to normal questions to struggles we have. Like tools we can use, services that are offered and normal side effects and issues we may encounter drug interactions. I told them I had to find a lot out on my own, that I had many of the same issues, and that I had not been diagnosed much longer than them, only 12-18 months longer (I’m just over 2 years) but that I was vigorous in my questioning, poured over research, and then found dailystrength.com and blogging as 2 great resources. Without them I was quite in the dark.
The information you learn online in your normal search is neatly packaged in a sterilized neatly defined bow and you have to learn to dig deeper. You have to learn to ask the right questions. And sometimes this is hard when you have just been diagnosed and are not sure what those questions should be. When I was first diagnosed my only question was could I still have a baby. I got mixed answers and it was not definitive, and then as I did more research and MG became more recognized in the last 2 years I found some doctors that had definitive answers but this was also linked to knowing what medications I was on, which at the time of I first asked my question, I was unsure which medication I was to be put on (cell cept, imuran, etc).
I feel proud to be able to give information about MG. Letting people know that you can go longer than you have before. I was once in their shoes unable to go more than a few days, then weeks without treatment. Now I can go months. You will learn how to push yourself to greater limits without harm.You will learn how to rest, and you will learn how to feel your symptoms and say I need rest but I can tough it out just a bit longer. My insurance is knowing I have a suction machine at home, and knowing if I need to I can crush my mestinon up and place it on my tongue on the roughest day and still get through on dehydrated days and refuel but I have not had to do this is over 6 months. I am learning where my breaking point is.
I still have anxiety once I begin to have a bit of difficulty swallowing and think that I may begin to choke but I think instantly I must calm myself and find my water and just breathe because obviously I am still doing that, lol. Or if I am struggling even more so, I must cough until my throat is cleared. Then I feel better and just relax. I do my best not focus on these tough spots but on the fact that they are fewer and farther between than the last time and that makes me feel amazing. My last one was 12/14/15 where I was choking in my sleep and only got an hour of sleep. However, I believe it was because I had hardly had much to eat or drink all day and then had something fairly acidic right before bed (causing passive reflux) and we already have mucus issues with MG. So I struggled all night. I kept waking up gasping for air as my airway kept getting blocked with mucus. It is so frightening. It hasn’t happened to me since well before August and I should have known better. Let’s just say I learned a hard lesson and along with that anxiety came a new found determination to be smarter.
I pray that from this post today, MGers all over learn that small steps can take you a long way and that you will not always be where you are now. Things can get better. They have even made advancements now that have been approved where there are new drugs that do not suppress the immune system to take in place of cell cept and imuran. I may be switched to these soon. I will let you know how that goes if this is the case. However, stay strong, know that if you have set back it is only temporary. Learn from it, use it, embrace it. We have MG but it does not have to run us.
Myasthenia Gravis 