Well, this isn’t technically the start of the journey. However, there really isn’t any real good place to start. Such is the problem with chronic issues. To be honest, I wasn’t even going to be open with this. I am not a real open person. At least not online. Too many bullies, stupidity, and meanness. But God spoke to me yesterday and who am I to disobey? You see, God gives each of us special gifts when we become a child of God. These aren’t talents, they are spiritual gifts. I have four: discernment, wisdom, knowledge, and teaching. They all play together. Rarely do I use just one. Yesterday, as I sat in church for the second time, the Holy Spirit nudged my heart. He gently reminded me that I was given gifts for a reason. Just because my earthly life was in turmoil didn’t mean I got to quit. In fact, who was to say that I wasn’t to use them more?
I didn’t know where to go with this. After all, I like things planned out and figured out in advance. But, if I’ve learned nothing else, it is that delayed obedience is disobedience. So, I am writing. I don’t know what will come of it, but it is here. One of my gifts is teaching. Nothing teaches you something like experience. So hopefully, someone will learn from my experience. Hopefully, these writings will reach someone that needs to hear them. So here we go.
The day after Christmas, my bloodwork came back. I was positive for an autoimmune disease. Not what my doctor or I were expecting. Needless to say, this effected me. There are no cures for autoimmune diseases. These types of diseases mean that your body is attacking itself. We don’t know how to cure this, but with some, we can manage the symptoms. So I was sent off to see a rheumatologist. I saw her on Wednesday. The news was not great. I had at least two autoimmune diseases. She ordered several blood labs, an EMG/NCS, a possible muscle biopsy, and this was just the start. She told me I had Sjorgren’s Disease. She is so confident the labs will bear this out that she sent me home with info and possible treatments. The second one, she believes, is Polymyositis. Most of the labs are in relation to this diagnosis. After giving a LOT of blood to be sent to a special immunology place in California. We went home.
Like any good analyst, the first thing I did was research. OK, I had actually started this the day after Christmas. So I was already somewhat familiar with what she said. Now I got down in the details. Wasn’t too hard since both are considered uncommon/rare diseases. There just isn’t much info out there on them. What is out there is all the same information. There is more about Sjorgren’s than Polymyositis. But the Polymyositis is the most scary.
Sjorgren’s attacks the glandular system. People usually start with dry eye and dry mouth symptoms. However, it can attack organs and cause complications. Many feel debilitating fatigue and have serious dental issues (replace all your teeth with dentures kind of dental problems). Polymyositis attacks your muscles. There are different kinds of ways it can attack: the muscle fiber, the blood vessels in the muscle, and the actual muscle, causing necrosis. There is little evidence as to what can work to help with this. The government and the research institutes can’t agree on anything in regards to this disease and their info varies wildly. One thing they do agree on is that complications of this disease are often fatal.
So after going to the rheumatologist, I naturally felt some relief. There was a name to all of the problems I had been having for 8 years. The problems that have been growing worse and worse. The problems costing me joy, family time, careers, and more. But the next day came. With it, came an overwhelming sense of dread and fear. I won’t lie to you. I plummeted to a pretty dark place. But you know what? I had been to dark places before. One thing I had learned (experience is the great teacher, right?) is that God is in those dark places too. We can’t see him, we may not feel him, but he is there. You see, God and I had already wrestled out my anger. We did that after my parents left from Christmas. Thankfully, it was shorter than the last time I wrestled with him (that was a five year endeavor!). This isn’t about me. It isn’t about me deserving this. It is about his will. I don’t understand his will, but my life is all about his will. So after the anger, came overwhelming anxiety and fear.
Job seemed to be a comfort during these few days. Despite what is going on, the unfairness of it, and the fact that it hurts physically and emotionally, staying the course is paramount. I couldn’t see God in any of it, but that didn’t mean he wasn’t there. Despite what was happening, and despite the fact that I couldn’t see God, I am going to stay faithful. That brings us to Sunday. It was at church that God showed himself to me, through others.
You see, until this point, I could not see or feel God. To be honest, I still don’t feel his presence. I’m too full of conflicting emotions now. However, he showed himself through others. He did it with the ladies in my Bible study. He did it through my Sunday School class that I teach. Again, through random people in church. All day on Sunday, he showed how he was working through me. Tuesday (before the rheumatology appointment) he showed me how he was working through me. He wasn’t subtle at all. People were literally telling me to my face how God was working in their lives and how he used me in it. It was a glaring word from God that despite my brokenness, he is using me. This is when I resolved that I need to keep pressing on.
It’s not going to be easy, by any means. Many days, I am lucky to even function enough to get out of bed. I’m worried about homeschool, I’m worried about the classes I teach, I’m worried about whether my lungs will have enough strength for choir, … And what about my writing? How will I be consistent? How will I finish my books? Do I even have it in me for the long haul? What if my work is subpar because of my health?…the list of worries is long. But God reminded me that everything I do for him is not in vain.
You see, he will use whatever it is that I can do. But not only that, he will give me the strength I need to do it. After all, he decided what I was going to do before I was even born. So I need to let go of the fear. It is doing nothing for me. Is it a legitimate feeling? Yes. But it cannot control me. So I am forging ahead, doing the best I can, and letting God deal with how it ends.
To write that, it seems so easy, but let me tell you something, there is nothing easy about it. The emotions are a constant issue. Just yesterday, the emotions came at the most improper time. Watching “The Greatest Showman,” a very inspirational movie (and one that I LOVE), was more than I could handle. I had to stop watching and take a time out upstairs. I was a mess. Why? Because inspirational movies are more than I can deal with. I had dreams like those people did. I had hopes and ambition. But my body has regulated me to just do what has to get done because I don’t even have enough in me to do that completely. Inspirational, for now, does not inspire but, in fact, brings about feelings of grief. Grief over the loss of dreams, grief over the loss of joy, … lots of grief. Frozen 2 is too much with Elsa dying and the scene with Ana. So no inspirational movies or movies with death for now. Only comedies. So please send any recommendations my way!
All that to say that right now, everything is a mess. My first day of writing makes everything seem so packaged with a bow. I get bad news, I handle it, and I push on. Although that is the gist of it, it glosses over the mess. The emotional highs and lows. The body problems I still have. The emotional turmoil my family is going through. On and on. But, it’s a start. I learned with my mom, during her breast cancer and liver transplant ordeals, that if you don’t write it in the moment, you lose it. So, I will endeavor to write as often as I can. It shouldn’t be too much longer as I go to have an EMG and NCS done in two days. I’m sure there will be much to write about that as I have never had them done.