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Updates ❤️

It's 430 in the morning and i wake up to Max's whimper over the baby monitor. I get up to go get him and the first thing I notice is that I cant open the door. My left hand is so weak I cant turn the door knob. I try with my right hand even though I have no feeling in it. As the door opens my forearm goes into spasm and causes excrutiating pain. i've had quite a few problems with my arms and hands over the years, but this is the worst it's been. The Botox wasn't working so we tried a new medication called xeomin and my left hand seems to be opening a bit, but it's completely useless because it's so weak. I can't do anything with it. My right arm has been affected by the dystonia, but also I have carpal tunnel so the two of those together also makes doing anything very difficult. Hopefully a DBS adjustment will help soon. After Max was born, I was diagnosed with a pituitary macro prolactinoma. I didn't know what it was at first, but then found out it is a benign tumor on my pituitary gland. It messes with your hormones and can cause infertility. This made me wonder if that was part of the reason I couldn't get pregnant with Max. If these get too big, they can push on your optic nerve and cause vision issues. That was the scariest part for me. I started medication in August to shrink it, but I just found out it has not decreased in size at all. The next step is to see neurosurgery to see if I need to have it surgically removed. I am going to Albany in March to meet with the surgeon. I'm hopeful we can get this taken care of so I wont have any problems in the future. One more thing I want to update everybody about is the dystonia walks. When I started doing them, I had a huge turnout. It was fun, and I raised a lot of money to give to the DMRF towards research. They brought me a lot of happiness and I loved doing it. Over the years we started to get less people and life has just gotten more hectic. I don't have as much time as I would like to put into it. I'm hoping over the next few years I can put together a different kind of fundraiser so I can still meet my goals and be able to give to a foundation that has helped me so much. I want to thank everyone who did come to the walks, i appreciate you so much. for now I am going to focus on my health, my husband and my 3 beautuful children ❤

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