My Life in Black and White

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On May 20, 2018, I suffered a TIA, also known as a mini-stroke. I think it was the scariest day of my life. I woke up that day feeling very tired and not like myself. I wasn’t thinking clearly, but I decided to go with it. I also remember 2 days before it happened I kept dropping things with my left hand and thought it was so odd. My mom and I went to the mall that morning but at around 12:30 my left foot started to drag on the floor. I also suffer from neurocardiogenic syncope and myasthenia gravis and a few other things, so whenever something seems off, I think it’s because of one of those. My mom and I got into her car around 12:45 and I realized I hadn’t eaten much, so I went to open an RX bar and my hand wouldn’t allow me to rip the package open. I started to feel really weird…I can’t even describe the feeling. I finally got the wrapper open, I took one bite and all of a sudden I looked straight ahead and said, “Mom, I don’t feel right,” and that was the beginning of the stroke. I didn’t know why during, but I started to pull the food out of my mouth and rub it all over my shirt and pants. I started slurring my words and crying because my brain was telling me one thing but garbage was just coming out of my mouth…I made absolutely no sense. I don’t remember the drive to the ER clearly…my brain was blank. I remember when we got there I couldn’t get up, so the security guard got me out and they rushed me in for an emergency CT scan of my brain and started the TPA. My body was basically jello. 20 minutes after the episode started, the whole left side of my body was numb and it was shaking uncontrollably. It was like a tremor in my leg and arm, and my brain was telling them to stop, but they just couldn’t. These symptoms lasted for about 24 hours. They did 3 MRIs and 2 CT scans all within 24 hours and all came back with no damage, so they said it was a TIA. I don’t think I have ever appreciated life more than I do now and will continue to do so. While it was happening I thought I was dying, I had no clue what was going on, and before the MRI I remember wondering if I would be stuck this way. I couldn’t have asked for a better medical team, though. They saved my life. After experiencing what I did and not being able to do things for myself, I appreciate being able to talk and go to the bathroom, brush my hair and teeth, and just being a human. For 2 days I had to use a commode and wheelchair because I wash unable to go to the bathroom or go anywhere, 3 nurses had to lift me in and out of bed. I couldn’t stop wondering if this was my life now, but because there was no permanent damage that the MRI could show, doctors said I would get better and they were right! It’s 5 days after and everything is back to normal except for my left leg. It’s still slow and drags but I am thankful to be getting better. I think the worst symptom I experienced was not being able to talk. When the doctors asked me questions, I made no sense and they just looked at me and I could tell they felt so sorry for me and they all just kind of frowned whenever I spoke. It was a sad day. 22 year olds don’t have strokes. I don’t smoke. I don’t drink. I have lost a ton of weight and have my cholesterol and blood pressure under control. I don’t have diabetes. I don’t have heart disease. The list goes on and on. But I do have autoimmune diseases and am on a ton of medication. They can’t pinpoint the cause, but they are saying it was most likely the IVIG infusions that I get (I got aseptic meningitis from IVIG too). This experience forced me to take a step back and look at all of the medicine I am putting into my body in a different way. I often wonder if side effects are worth it or not. It’s such a hard decision. I am sick, 100% of the time my body is attacking itself which is such scary thought. Having a TIA changed me in so many ways. Good and bad, but right now I am struggling with who I am and how to get past the trauma it caused to my mental health. Not being able to do things for myself really scared me and I am so sorry to anyone else that has ever had to go through this. All of my health scares and near death experiences if you want to call them that have inspired me to show you what chronic illness is really like. Instagram and all forms of social media show the “pretty” sides of life. I would describe chronic illness as black and white. It’s one or the other…good days or bad days, with no in between. I either feel good enough for everything life throws at me, or I don’t. So, for the next week or two I am going to share some photos in black and white of what living with chronic illness looks like each and every day. Below is a video I took when I was unable to talk normally.

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