I think I should let you in on the past few years of my life so you can understand some of my crazy going forward. I used to be a workaholic! I worked as an administrator for Rutgers and was at the office 40-55 hours a week. I never missed a kids game or concert or anything important so I thought it was all ok. I would race in my dress and heels to be the third base coach at my daughters softball game, to a wrestling match, to a basketball game, to cheer practice, to football, to a baseball game, to a fundraiser, to open the snack stand at the rec field, to a board meeting, ect. Wow! Just typing that makes me tired..LOL. I think we just get in to go, go, go mode and don’t realize how crazy our lives have become.
You would think that COVID would have slowed me down but not too much. I was still working full-time on a hybrid home/office schedule while managing staff from a distance and constant policy changes. In April of 2020 I developed drop foot. I had been suffering from back pain for quite a while and then this happens. Of course, it was during the height of the pandemic so I didn’t go to the hospital. In May of 2020 I could no longer take the pain and had emergency back surgery. The next day I felt better than I ever had before and they discharged me.
A few weeks later I started falling and losing use of my limbs. On June 26, 2020 I was rushed to the hospital paralyzed from the neck down. I was later diagnosed with GBS and then CIDP. After 90 days in the hospital and rehab I finally made it back home but my life would never be the same. Funny how it takes such a huge life event for us to finally make changes to improve our lifestyle. When I was in the hospital I never thought “I should have worked more” or “I should have bought …” it was more like “I should be home more with the family” “I should have reached out to (insert anyone I don’t talk to as much as I should)”.
It has been almost 3 years and my disease is under control. I take too many meds and get IVIG infusions every 3 weeks but, it keeps me almost fully functioning. I no longer work full-time. I am currently on disability and teach a class here and there for a little extra money. I spend a lot of time with my family making memories and enjoying our time together. We just started traveling again and I can’t wait for all of our future adventures together. Life is about the memories with those you love not the money or the status.
I tell you all of this so that when I say my life is CRAZY you understand that I have my own shit to deal with daily before trying to take care of everyone else and can only do so much before I tire out. This combined with being a stay at home mom these days, wife, and caregiver to aging parents really can make the days nuts even before noon.
I f you know anyone with GBS or CIDP the foundation listed below is a fantastic resource. I suggest finding a center of excelance for medical care.
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