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 ❤
I have been doing as well as could be expected. I am back in Florida so it's nice to be with Ryan. Although I am still upset about the whole thing, I am trying hard to smile and not let it show. The spasms have returned and have gotten worse since the DBS was removed. When I suck on a piece of candy or ice, my throat tightens up. It's very scary but Im hoping it won't get any worse. My neck also twitches sometimes and my foot spasms have come back. My hand is curled in but if I think about it, I can straighten my wrist (not my fingers). The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open. I had never been so excited as I was that day. I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey. Hailey helped me ...
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