We went to Chicago on December 2nd and were told I had relapsed. I was declining so quickly. Everyday that went by I was losing more feeling, losing my stability and ability to walk, having more and more muscle cramps, eye twitches...and so on. I was getting weaker by the hour, not able to lift either boys up. In a matter of a week, from when we were in Chicago, we started my IVIG infusions again. My old nurse Bello cleared his schedule for me and spent two days at my parents house administering my medicine.
An odd juxta position: to know the horribleness of what the infusions will do to me and wanting it so desperately to stop the damage that it was causing.
Thankfully, the medicine started working very quickly. By the third day post infusion, I noticed improvement in my legs. By week one post, the numbness/pain/tingling had begun to recede down my feet. By week two, it was down halfway on my right foot. By week three, my left foot started showing signs of improvement. Today, I can wiggle my toes again and I can feel the heels of my feet.
I had another infusion on December 31st (Happy New Year), not so much fun when you are sick. I'm in bed recovering still and will likely be very ill tomorrow. But, it's helping. I can feel the improvements and that makes the pain and discomfort worth it.
How are we?
I am past the initial heartache of it all. It was a major loss that we all felt. Seeing my dad so sad about me feeling sick, having IV lines hanging out of my body, it's something I've gotten so used to. But as a parent, I can imagine how sad that must feel. To see your child, sick...knowing there is absolutely nothing that you can do to help them...a helpless feeling.
I told Jesse that if me being sick will keep everyone else healthy, then I'm fine with that. I don't want to begin to think about anyone else in my world falling ill. I know that I have absolutely no control over that, but it's a nice thought.
The boys have been handling it all pretty well. They are enjoying mommy movie dates in bed and cuddles under the covers. They are learning empathy and how to help when someone doesn't feel well. Wonderful traits that their friends and future loves will reap the benefits of one day.
Did we buy the house?
Yes, yes we did. It was not really ever a real question. It was more of a fear of the unknown. We signed papers on the 30th and spoke with the sellers at length. This isn't just any house. They built it in 1976. They lived there for 40 years! They had their children there, their grandkids too. There are memories of them everywhere. Their first Christmas tree planted in the yard, the foot bridges that they built with their grandkids, the marks on the shelves in the garage showing how tall the kids had grown. They showed us such generosity in leaving tools and yard equipment that they no longer needed. Now we get to continue making memories there. Start new traditions, add on to the foot bridges, plant our own first Christmas tree next year. While I am hesitant to dream again, I know I must.
I am a planner. I like to know what's going to happen and what I can do to prepare for it. With this disease, there is no opportunity for planning. At any time, my body could go on strike and say, "Nope! That IVIG will not work anymore. What else you gonna try?"
As Dory encourages, I keep swimming, even when I feel like I'm drowning. Feelings are useful tools but they are also very unreliable at times.
