I want to clarify my last post a bit. I think maybe I was just in a funny mood. I was sick and down because my days are so unpredictable. I know my purpose is to be a Godly mom , wife, friend and to take care of the needs of my family. What I’m struggling with is all the unpredictability. Sometimes it is lonely around here. Not lonely meaning I need people around but lonely with fatigue or wanting something meaningful to do. The quietness can get my mind going. I struggle because I can’t commit to things. I want to help and visit and enjoy things but I don’t want to cancel. I want to write a book on my journey for our family. I feel like I’m incapable or won’t be able to complete it. Starting it is half the battle. I want to make money so our family can go away on a holiday. But am not allowed to work . I dream of the day that we can finally do our getaway. I don’t want to just go away with Aaron. Being away from the kids is hard for me still. Too raw. Spending weeks and months away while being sick was just too hard.
This is the stuff that goes through my mind on a daily basis. Going off steroids I think is partly to blame. It puts you in a sort of depression. Not bad , just down. Once Molly is all healed up from her surgery I’m hoping to get out and walk more. This will help with the tiredness.
On a happier note, my doctors appointment yesterday went really well. I had almost perfect blood work. It was a real joy to see my results. It’s been over 2 years since my blood work has looked so good. There are minimal signs of gvhd. I’m almost off the steroids. I’m being referred back to the stroke neurologist to see if there’s something we can do about all these migraines. Many seems to be associated with the torn artery in my neck. Ct scan shows no tear so it must just be scar tissue . Who know. I’m hoping to get a nerve block or Botox in my neck to help with the frequency of pain. Right now it’s daily. In the mean time I have a 2 month break from visiting my hematologist. I have IVIG therapy next week to help boost my immunity and then things are pretty well low key until end of January.
I hope all my American friends and family have a wonderful Thanksgiving. This can be a hard time for those missing family members but try to remember that thanksgiving is about being thankful and God has surrounded us all with blessings. Look for those blessings and find joy in them. ❤️