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Jul 31, 2019 Latest post:
Nov 23, 2021
Welcome to my CaringBridge site. We thought it would be easier to keep everyone updated in one place. I asked Ali to do most of the updating but I wanted to share a bit about how we got to this point...
Hindsight is 20/20. Looking back, a lot of things make sense when I see the big picture. My symptoms were so gradual so it's hard to know when everything started. The thing that I noticed first was my monthly emotional struggle around my cycle. I had major mood swings and acute depression that seemed to last 2-3 days, intense physical pain in my legs. I just thought I was getting older and had blamed it on that. I felt old and in pain more often. I started getting regular headaches, but I always found a reason for them - tension or stress or I slept wrong. The most alarming and unexplained thing that would happen to me were these sudden fatigued blackouts. Once in a while I would go from feeling normal to instantly exhausted and would have to lay down and sleep - often in the middle of the day. I would sleep for 3-4 hours sometimes. I blamed it on getting older and heat exhaustion, over doing it, etc. I even talked to a doctor about it that summer but no one seemed alarmed except Jeff and Ali - they were keeping track of my “crashing” episodes because I'd lose touch with them throughout the day when they happened. I seemed to be less and less able to keep up with normal things going on in my family and with my friends, I cut back on a lot of activities I used to do to concentrated on work and family, and tried relaxing more on the weekends and in the evenings. And every month like clockwork for 2-3 days I would get so irritated, raging mad, depressed and overwhelmed with life. I felt so confused with my emotions and reality and for those 2-3 days I fought the thoughts of not wanting to be alive anymore. I would just try to isolate myself and sleep more until it blew over. I just felt like I needed to get through those days and I would be fine... and I would, typically. Life went back to "normal" until the next month. Except, each month things seemed to be getting worse and worse as my emotions and sense of reality became distorted for those couple of days. My mood would swing so fast I couldn’t even keep up and during those times I would get instant headaches and be so sensitive to noises. I would cry because it seemed so loud, sometimes so loud and emotionally confusing that I wanted to kill myself in that moment. It was extremely spontaneous. As quickly as it would come, it would end and I would need to sleep for hours, waking up and not always remembering all the details of the incident. Ali and Jeff did their best to keep me safe during the episodes but they were intensifying and it was scary for everyone.
As the winter turned to spring, my monthly episodes started happening more frequently and were more intense, now twice a month, still matching certain occasions in my cycle. I got help from my doctor, thinking it sounded just like premenstrual dysphoric disorder so I was put on an antidepressant. It was the first time I took any kind of medication really... and my body wasn’t handling even small doses of it, but worse, the monthly emotional distressed episodes still occurred. I got passed on to another doctor, tried different meds yet it got worse. The new ones turned me into a zombie. I felt like I was in a constant fog and couldn’t even interact with others or do what was happening around me. I noticed strange ringing in my ears that never went away, work was a struggle, home was a struggle, I couldn’t function, I couldn’t get out of bed, I wanted to sleep all day, I struggled to do anything and I felt so disconnected from my world. More episodes, more doctor visits, now a break from the meds. I was still having my bi-weekly episodes, and dang, they were getting more and more intense - computer screens, loud noises, music, flashing lights or lots of people talking would trigger extreme emotional confusion, uncontrolled anger or sadness for no reason, hysteria, and the desire to make it all stop in that moment followed by extreme sleepiness. My lack of fear of anything and impulsive suicidality during those episodes scared Ali and Jeff, who had witnessed and supported me during all my episodes. One night everything changed. Ali and I went to Hillsong United and even though it was such a great concert, all the lights, loud music, people and smells overwhelmed me, making me feel like I was floating and triggered another episode.... We left the concert and went straight to the ER. Later, I was admitted to the medical-psychiatric ward at Mayo in Rochester. I can’t even explain the experience of those 7 or however many days. Since I was admitted with neutropenia (low blood cell count), the doctors were looking for anything that would explain all my symptoms. They ran a million tests and had several groups following my case. No one could figure it out. They were getting ready to discharge me with Bipolar Disorder but Ali asked that they do a brain MRI. Sure enough, there was the mass. The psychiatrists were all surprised when they found the brain mass. Neurology got involved and more tests, but we were finally getting answers that made sense. They explained that the episodes I’ve been having were actually focal seizures. Everything finally started to make sense. We learned that during your menstrual cycle, your brain actually swells naturally and that was causing problems with the tumor. I have a team of people trying to navigate my case. I feel blessed to have the experts and support people around me. Ali will be updating my page when we have updates.