How Am I Doing?
Overall, GREAT! I have not had any (ANY) CIDP medications since before transplant. That in and of itself is something I never thought I'd be able to say.
Some symptoms from the disease are still there, mostly numbness, pain and fatigue, but nothing like it used to be.
On the 1st of this month, Jesse and I celebrated our 10th Wedding Anniversary and our 18th year of knowing each other.
We went back to the same place we honeymooned, 10 years ago! The owners donated two nights to our fundraiser and they ended up in our lap. Thanks Harmans!
We had a great time remembering, being silent, and talking about our future (something we had stopped doing). We are dreaming again. We are living life in new ways.
How's Your Toe?
My toe saga continues. I was seeing the wound care specialists once a week for over a month. This past week he looked at it, shook his head, and said "damn toe!" Exactly. It's healing, finally, just very slowly. I've "graduated" to seeing him every two weeks. Yay! One less thing in my calendar!
Are You Working?
I never really stopped.
Yes. That is a photo of me, in the hospital, getting chemo, during transplant, working. Totally my choice, but still crazy. Owning my own business has been great. Especially since I got sick 4 years ago. I'm sure if I had been working for someone else, they would have let me go due to the constant absences my treatments caused.
My clients are happy that I'm back as we are starting to get everything caught up. The joys of bookkeeping, it never stops, it must always be counted and will always be there.
What are some physical improvements?
I can open some jars.
I can pick up a grain of rice off of the floor.
I can walk and walk and walk!
I can do wall push ups.
I can hold 5 lb weights.
I can do wall squats.
I can run in an emergency (like when your two year old does a face plant on the sidewalk).
What are some things that are still difficult?
Fatigue is still a thing. Probably will be for awhile. Keeping up (or trying to keep up) with the boys, is definitely exhausting.
Pain in my legs and feet continues to be an issue.
Things that WOW me:
Prior to HSCT, I would wake up in the morning, and we would do everything we needed to do upstairs. I'd gather everything we needed for the day before we went downstairs. I only had so many stair trips in me for one day (typically 3 or less). Now, I don't even think about it. I still try to get as much done upstairs before going down, just because it makes sense, but I'm no longer concerned with not being able to climb them. I just do it when I need to.
Increased feeling in my hands. I had no idea how much I couldn't feel. I'm still amazed at the smoothness of my little ones faces or the roughness of their little hairy legs. Boys are hairy. Lol
I'm still pinching myself that this is real. How could this be real?! It's awesome and I'm so thankful for the chance to be healed. Excitedly paving the way for others to be saved from these horrible autoimmune diseases.
1 comment:
So happy for you and your family and your future. Way to go!!
I am going in January to The Philippines for my HSCT.
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