A Year of Grace

Yesterday I went and painted pottery with my mom and sister, something which has been a goal of mine to do for over a year, and something which would have been impossible for me to do even a month ago. Day before yesterday marked one full year from the day I started the medication that gave me back my ability to walk and speak. And the day before that, I got news we've been waiting for, a diagnosis which explains how I got an autoimmune disease, and provides a clear road for how I can continue to improve.

God's timing truly is something else. When I sat in that infusion center on the morning of October 15th, 2024, as the first dose of my new medication was infused, I was a bundle of nerves. The last infusion I had tried ten months before had caused me to become much sicker, and the possibility this could happen with this new medication terrified me. But the potential results if that didn't happen? If this infusion worked? By the grace and mercy of the Lord, only good came out of this treatment. Within that first week, I took my first staggering steps....the following I walked a few more. The next week I shakily went down a few stairs and back up. It is still hard to believe even now that this was a real thing, it was really happening.

Since then, I have continued to be blessed with this infusion every week. God has over and over again provided the means for me to receive this treatment through every circumstance that has arisen. He provided a port, a device in my chest, so that I no longer needed to have very painful and increasingly unsuccessful iv accesses every week. This opened up the opportunity for me to learn how to access this port myself at home, meaning I no longer rely on other people to administer medication that keeps me functioning, and am able to add new medications more easily when needed. He has also continued to provide monetarily in order for this infusion to be available to me. Most recently insurance agreed to cover it for the rest of this year, something that is an absolute miracle and which we thought might never be possible.

And then, a few days ago, as I said before, we got the news for which we have been searching for seven years, and which explains why I have this autoimmune disease.

I think what stands out to me most about this is that God didn't have to show us what it was, we could have continued on not knowing. In fact this new diagnosis would not have been possible three years ago. I am so endlessly grateful for the Lord leading us to the people who knew to look for these things in my genome, so that we can finally have these answers.

It has been discovered that I have a rare combination of multiple genetic mutations which altogether create a rather chaotic storm in my body, one which has been getting more and more out of control my entire life. These genetic mutations cause an only recently recognized autoinflammatory disease. This is different from an autoimmune disease (despite the similarity of names, I know it's confusing), as it deals with a different part of the immune system. Think of it like it's the little army on the inside of all your immune cells deciding what is an invading threat and what is just yourself. Well, because of my genetic differences, this little army freaks out about all sorts of non-threatening things, and as a result they are constantly forging a truly excessive amount of weapons and using them against me. This is of course very uncomfortable, but more significantly, when left to run out of control for years and years this army recruits other parts of your immune system to go rogue and assist them in their attack. Essentially, if we could have known about and treated this genetic disease years ago, I would likely have never developed the autoimmune disease which caused me to lose my ability to walk and speak last year.

This is one of those facts which, had I not experienced the Lord's sovereignty proved out to me over these past many years, I might struggle to make sense of. I mean, my goodness, this answer has been there, written in my genetic code all this time! But because I believe the Lord has known and guided from the beginning of time the story each of our lives is to follow, and is working it out for His glory in each of His children, I actually find this whole series of events, and the timings in which He has shown Himself faithful to be truly remarkable.

In the end, it was for His glory that I went through the difficult trials I experienced last year. I might not have always responded to them in the way that best glorified Him, but I do know that the moments I was able to recognize it, His hand was seen so much more clearly through the lens of grief and suffering.

His timing in providing these new answers now is providential, for over the past months I have not reached the improvement we would have expected had I only been dealing with an autoimmune disease. Receiving this new diagnosis of an autoinflammatory disease and now the proper treatment for it lowers my chance of some really major complications in the future, and hopefully my immune system will be able to calm down and heal.

So now, a year into finding treatments that work and give results, and entering a new year with a defined diagnosis and starting even more targeted treatments, I have a great deal of hope for what might be possible. His mercies are new every morning, and His blessings are great and innumerable.

All in all, this time of year and combination of events seemed like the perfect opportunity to share a story of His faithfulness and give thanks for His mercy. So thank you for reading! Soli Deo Gloria friends.