Sunday, March 28, 2010

Teetering on another exacerbation

Well, the week hasn't gotten any better. Imagine if everything you saw looked like the picture above. That is what happens to me when my vision gets bad. This time it was even worse. I had to take off Thursday and Friday due to extreme weakness in my legs, severe vision issues (I can't even call it double vision it looked like I was trying to focus through vaseline coated glasses), and shortness of breath. My neurologist was out of town so the team of residents and the IVIG nurse reviewed my file and came up with a "keep Jen out of the hospital for the weekend" plan. My mestinon has been increased from 60mg every 4 hours to alternating 60/30mg every 2 hours. This has helped a little bit but a little bit at best. I fear the next step is either increase the predinsone or add another day of IVIG each month. I don't want to do either. The prednisone will make me a hairy, fat, emotional wreck, and the extra IVIG will take up a third whole day each month. I am supposed to hear back from the neuro tomorrow to see how I am doing and find out the plan moving forward. I was told that the temperature changes in the spring and fall can have a major affect on myasthenics. I hope that is the case and in a few weeks things will calm down again. I'm praying as I am really sick of being such a burden on family. Well that is all I can type for now. I am still exhausted.


  1. Listen, young lady, get that burden stuff right out of your head. I KNOW how you feel, and I think especially as moms it's even tougher, because we are so used to be the caregivers! When you are this sick, you need rest. After TEN years, I have finally accepted that I can't do it all...I have a cleaning lady come once or twice a month, and Jacob is now going to daycare one day a week. Your family loves you, and yes, it gets difficult, but you will all get through this. I promise!! Hang in there, kiddo!

  2. Thanks Kerri, I know you are right. I have a wonderful support system with family coming over to clean at least once a week and my toddler is in daycare when my hubby isn't home, thankfully he is in night classes and we have family support to come watch me and the kids. I just need a break, you know?