Swimming Against The Current

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 ou...

I wake up in the morning, get my kids ready for school, make my husband and I a cup of coffee and take three small pills. When you look at them you’d never imagine what they could do to your body but right from the beginning I was willing to do it. No matter what it took, I would do it. Little did I know, these pills would just be another part of the sadness. I continue on my day, limiting caffeine, watching what I eat and gaining a pound a minute. Before bed, Jim injects more medication into my buttocks. These medications are supposed to be getting my body ready to have a baby but for some reason this small thing that I want so badly is so hard to achieve. Since the day I met Jim, we’ve wanted a baby. We’ve picked out names, first outfits, and ways we want to tell our parents the news. It’s been 4 years since we agreed we wanted to start trying and we still don’t have it. Just before Covid hit, we decided to see a fertility specialist to help us achieve pregnancy. We tracked my cyc...

  For some reason I don’t remember a lot about my childhood. But, I remember being sick a lot. I remember when my friends were outside playing, I was sometimes laying on the couch with a nauseating headache and a tickle in my throat. I remember even when I felt ok I still had a cough and when my mom would bring me out in public everyone would stare at me and be afraid they would get it. Nothing I had was ever contagious though. I was tested for whooping cough more than once and it was never positive but I still had to be out of school for days to wait for the results. I remember when I was in second grade I had to have an MRI of my brain because my headaches were so bad. I used to tell my mom it felt like there were marbles rolling around in there or someone inside my head with a hammer. My mom and dad tried everything to help me, bringing me to many doctors and even health food stores to find out I had a sensitivity to dairy.    When I was 12 I started having different s...

  February is rare disease month and although dystonia and 22Q are not diseases they are both rare “disorders”. So I figured now would be a good time to update you all on me & Cody (and the rest of my family)! This morning, as I made my way to target, I could feel my head pulling to the left. This hasn’t happened for a long time but as the pain started I knew exactly what was happening. By the time I got to target, my neck was in a complete spasm and I was unable to straighten my head. I sat in the parking lot for about 20 minutes as I waited for it to pass. It brought me back to before I had kids when the same thing happened in a Marshall’s parking lot and I had to call my mom to come help me.  The last year has been pretty tough with my dystonia. My DBS doesn’t really work anymore so I take frequent trips to Albany to get Botox in my hand, foot and neck. It hasn’t been helping with my foot but it definitely relaxes my hand. Unfortunately it also makes my arm extremely we...

  Dystonia awareness month My journey likely started long before 1998 but that year was when I dislocated my shoulder for the first time. After many doctors, misdiagnoses and people telling me I was making it up I was sent to Children’s hospital in Boston and in 2000 had my first shoulder surgery for “instability”. By 2008 I had had 6 shoulder surgeries. That year, after the last surgery I lost use of my left hand. Many more doctors and tests later I was finally diagnosed with dystonia in 2009. After many trials of Botox, medications, hand splints and therapy we started to discuss the possibility of deep brain stimulation. By this point it had traveled to my feet and my neck and I would sometimes need my mom to massage a cramp out of my neck in a parking lot so that I could drive home.  In 2011, I had my first DBS placed. My hand opened for the first time in 3.5 years in the OR and we all had hope that it was successful.    It worked great at first but 2 months after...

  When I had my DBS placed the first time, I was scared. I didn’t know what to expect, I was just starting out my life as a mother and I was scared. I had never shaved my head, I had never been awake during a surgery and I really didn’t know if it was going to help me or not. After the surgery, I was excited to hear that my hand opened in the OR. I had hopes that my life was getting better! When my head got infected I was even more scared. Going home with IV antibiotics for 6 weeks was the scariest thing i had ever dealt with. The headaches were nauseating and it was truly a scary time. Then they had to take out it out which was even more scary because my dystonia was going to get bad again. When I found out my insurance company wouldn’t cover it to be done again you can imagine how scared I was. But we fought it, I had it done again and it worked! 7 years later, I was more scared than ever! I had recently got divorced and was now dating an amazing guy. I was so scared for him to s...