God is so good, and with every breath I take I will praise Him and His goodness! It has been a month and 5 days that I have started the medicine to try and stabilize this rogue gene. I am told it can take months to a year before I feel a difference, and that can be scary and takes a lot of trust. I know my heart has already been affected, and thats something I cant gauge until we get the scans. I know that the numbness has increased, it is normally my whole leg, arm, and now up 1/2 of my face. If you see me walking and my head is down I am watching my feet to make sure they touch, or am saying in my mind, left right left right. I have to find an eye dr because my right eye is hurting, hard to see from, and constantly feels like a film is over it. Apparently most hereditary Amyloidosis patients have eye involvement as well. It is easy to be discouraged and some moments I sit here and cry about what is, but I try not to stay there, I try to focus on all the good God has done, and continues to do. I have a bucket list that I want to complete, and work that I need to do.
When I get in my down moments, I think of this list on what Amyloidosis has taught me:
- To fully enjoy life, see the colors, take time to smell the roses, enjoy hugs, friendships, fully invest
- It has made me grow deeper in God’s word then I ever thought I could, and I still crave to go deeper still.
- My husband and I have gotten closer: the other day when I about fell he caught me and we danced and he said all I had to do was ask. He never makes me feel out of place, or a burden. When we walk to football we are usually arm in arm so if I stumble in front of like 100 people it doesnt seem so. We have also talked about my cool hoverround for the future.
- We have gotten healthier-he is not working out daily and I have started to work out with a great group of ladies who know where I am at and support me fully. I am always afraid of stumbling or falling in front of people, but I know with this group it would be ok. Satan likes to use that when I am walking.
- My boys have grown in God, and themselves, they have had to deal with things that just aren’t fair, but they are both always ready to help and watching watching how I deal with what life has me at now.
I don’t know where life will take me on this Amyloidosis journey but I can see God’s hand ALL over it from 10 years ago when my dad got his diagnosis, to changing church’s a little over a year ago. I didn’t understand at the time, but I do now.
So I guess my take away is, embrace the trial, enjoy life, lean into God who WILL sustain you. We have a crazy medical bill coming up, and I know He will provide, I have no doubts. There is so much freedom in just letting go and letting God, that I always heard people talk about but never fully understood. Don’t keep your trials to yourself you never know who can benefit from seeing how God is moving mountains.
Look up, because again 1 Peter 5:10 after we suffer for a little while He will restore you! What a beautiful thought that is!!