I know it’s been a while since my last post, but I’ve been taking some time to reflect and process a couple of things that I’ve been dealing with over the last few weeks. Let’s start off by rewinding back to our trip to Alaska.  We had a blast and amazing memories were made that I will forever cherish.  While the trip was breathtaking and more than I could’ve ever hoped for, I had noticed that in a few pictures that my left eye was drooping pretty heavily.  I remember the morning after I frantically ran to the bathroom to check my eye and everything looked and felt normal.  

Now keep in mind that if I back up to late last year, I started to experience some fatigue and weakness when I would be doing the simplest of tasks.  After 3 blood tests over the past 6 months, my physician did see that I had some inflammation, but since it was just a general test, she could not pinpoint the location.  Since then I have been going to acupuncture and have shown little to no improvement in the past 4 months.  After the year we’ve had, James and I were confident that it was stress that was triggering my symptoms.  Understandably, I accepted this and made every effort possible to control my daily stress at home.  After the progression of my husband’s cancer has slowed down, it was easy for me to eliminate a large source of my stress that I carried with me for months.   

During my most recent checkup, we went over everything going on and my physician decided to send me for additional blood work.  It was just as I started packing for my trip to Texas to spend Thanksgiving that I received a call from my Dr. to give me a heads-up so that I wouldn’t be blindsided before the neurologist was going to give me a call.  Turns out they discovered that I had something called Myesthenia Gravis.  MG is a “chronic autoimmune neuromuscular disease that causes weakness in the skeletal muscles, which are responsible for breathing and moving parts of the body, including the arms and legs”.  This would explain the pain I was experiencing.  It can also effect the diaphragm and can impact breathing and/or swallowing.  

I was lucky enough to be able to talk to the neuro dept that day and I immediately made an appointment to get a CT scan.  The CT scan will be a huge determining factor for what my treatment plan will look like.  When we returned from Texas on 11/30 I had my CT scan but I had an allergic reaction to the contrast.  I ended up in the ER and thought to myself “what a way to end my wonderful Thanksgiving”.  After getting home I slept about 14 hours and that was pretty much the best part about this reaction.   

After doing a little research I discovered that removing my thymus or going through infusion treatment are two possible options for treatment, but also learned that there is no cure. I’ve accepted this and understand that I will most likely be on medication for most, if not, the rest of my life.  Caregiving for James over the last few months and watching him go through his cancer journey, has definitely humbled me so I will not let this news discourage me.  We have so much to be thankful for and even much more to live for.  There isn’t a hardship in the world that our family can’t face, and I will overcome this. 

At this point I don’t know much about this disease and am open to anyone whom can provide advice.  I never even knew our bodies had a Thymus gland.  Other than fatigue and a droopy eye, I would’ve never even known. I’m taking things day by day and am praying for my successful battle and for the well-being of my family.  Thank you again to all of you that have been there for us and have supported us throughout this journey.  Your love and support mean everything to us!   

***Since the day I started to write this post, I discovered that someone who is dear to me suffers from the same diagnosis. Thank you for answering all my questions and sharing your story with me, Julie!