AG10 failed. Weak legs are the new normal.
Before Christmas I was having a lot of trouble with my legs, not pain so much but they were so weak and tired. I would walk from my car to the store and it felt in my legs I walked about 6 miles. I thought I was just tired, so I rested them, and still the same was happening. After talking to the dr, this is the new normal. While the heart may be stable, the disease is still there. I was also told that my journey as far as progression will likely mirror my dads, that the progression tends to run the same in families.
I remember that my dad’s legs were what made him aware he was sick and that something was wrong. He went from hiking mountains to barely being able to walk the grocery store. It was difficult to hear, but God’s timing is always just perfect. During that time I was working on gifts, and Bible verse, so I was staying in God’s Word. I couldn’t go to that dark place, I was praying for others, I had work to do. God knew I would get that news just then and had already set things up for me not to fall too far.
I am adjusting, learning when to “use” my legs and when not to, so that I can “use” them for something else. It is also saving us money, lol! Because it has become do I really need to head to the dollar store or can it wait. It has been challenging but I am thankful I have my legs still to use. It is amazing how much I took them for granted before I just jumped out of bed and never gave a thought about them. I pray the medicine works to slow down the progression in my legs, that I stay here for awhile, but mostly I pray that God helps me deal with each step. That He helps me focus on what I have and not what I am losing. And that He gives me the strength to bust out my purple cane when I need it.
AG10, the drug we were waiting on, the drug that had such promise, has failed. It was a blow. This is the company that we did the video for, that flew all the people out, that did our photos for us. When I heard the news I felt like I couldn’t breathe, because that was the drug that was going to do great things, was going to really slow this disease down, and then just like that it wasn’t. What other hope was there? I wish I could say I quickly realized that my hope was placed in the wrong place, but it took our study last night for me to see it.
We are walking through the book of Psalms, and it has been great. To not just read the book but to study it and get other women’s perspectives. Last night we started with Psalm 13, and God knew at just that time that’s where we needed to be. David feels as though God has left him, that he is all alone in the beginning of the Psalm, he asks that God change his view point, and at the end he sings to God for ALL He has done for him. I was David when I heard the AG10 news, I was asking God why? Why get me all involved when you knew it would fail? Why have I placed my hope in this drug? And then boom faceplant for me!
My hope should have never been in a drug, but in Him. It is easy to say that we will walk wherever God takes us, but will we really? It is easy to say we trust God and his plan, but do we really? That is my goal for the year 2022, my words of the year are Deeper and Surrender because I was to go deeper in my relationships with Jesus, my family, and friends and at the end I want to surrender to Him. His road, His path and His ways. While it is devastating that AG10 has failed, He is not surprised, He is not up in heaven walking the floors looking for a plan B. AG10 was never on the radar for Him, even though it was flashing lights of hope for me.
I have no idea where Amyloidosis will take me, how long it will take to fully progress, or how long my heart will remain stable. I do know that this is the path He has for me, and I should walk it well, finish the race with confidence in Him and nothing else. Onward we go, thanks for taking this journey with me as we are all just walking each other home…..