I’ve been hesitant to share what has been going on in my life lately because it’s hard to be vulnerable. I know that people don’t need to know every detail of my life… but I believe that during those unpredictable, hard times, it’s important to have a village. I truly believe that we shouldn’t have to go through life’s struggles by ourselves. I admit that I can be stubborn and try to “fix” things on my own. I want support and prayers. I also want to spread awareness. Maybe my story can help others. So buckle up, it’s a crazy ride!

Struggling With The Unknown

June… this month was the hardest month my family had ever been through together. Our Florida vacation was cut short. Pete’s Dad Jerry was put on hospice and passed away 9 days later. We had his funeral on Father’s Day. A week after Jerry passed, I was hospitalized for 2 nights. I ended up back in the ER the same day I was discharged… this is the main reason for this blog post. But every detail before and after my hospitalization is important. I kept thinking to myself, “what else is going to happen?” I was SO glad when June was over. However, I was going into July with many unanswered questions about my hospitalization.

On June 19th, I thought I’d never be capable of holding my kids again or even walking again. It was another normal day for me until 11:30 p.m. Pete and I were lying in bed scrolling on our phones like we normally do. Suddenly, the right side of my face went completely numb. I felt my eye and mouth start to droop. I sat straight up in bed and looked at Peter. He immediately asked me what was wrong. I told him what I was feeling, and then my right arm went numb. I couldn’t move or lift it or make a fist. Then my speech started to slur, and I basically just felt “out of it.” My first thought was, OMG I am having a stroke. But I’m young and healthy; how can that be? After a few minutes of freaking out, we decided to go to the ER. But it was in the middle of the night, and our kids were all asleep. Peter called my parents. They didn’t answer. Next, he called my Aunt Dona. She answered and quickly rushed over to our house. The ER was expecting my arrival, so I was taken back right away.

Once we got to the ER, I was taken to get a CT scan. The nurses and everyone around me were working quickly to get the scan done. I had a scan done with and without contrast. After the scan, I was taken to a room in the ER. Shortly after that, my leg went numb. I also couldn’t move or lift it. The entire right side of my body felt “lifeless.” I was scared. After a few hours of waiting, my CT results came in. Everything came back normal. No sign of a stroke. No bleeds or masses in my brain or neck. I was confused and frustrated because I just wanted an answer. This meant that I would need more testing done.

The next step for testing was to get an MRI to get a closer look. We waited 3-4 hours before I was taken back for the MRI. Still incapable of using my right side of my body at all. The MRI was loud but also kinda relaxing because I got to listen to music. Shout out Alex Warren. After the MRI, I was admitted to the stroke floor in the hospital. Throughout the day on Friday the 20th, I had several nurses and doctors going in and out of my room. I was exhausted and anytime I was about to get some rest, another person would come in. PT and OT came in and had me do arm, hand and leg movement tests… even though I still couldn’t move. They managed to help me stand up but I couldn’t walk. They decided I would go straight to a rehab center after being discharged. I needed to do physical therapy to regain strength and movement on my right side. A speech therapist visited and did an evaluation on me. She said I passed. During this time, I started having “episodes.” My demeanor would change. My face would droop, and my speech would get super slurry. It felt like I could only talk about of the left side of my mouth. It would last from 30 seconds to 1 minute then completely go away. The numbness never went away, but the episodes kept happening. I had 4 of these episodes in the span of 2 hours.

FINALLY a doctor came to visit me to talk about my MRI results. I had already read through my MRI results on my chart, but obviously I didn’t understand most of it. I felt very dismissed by this doctor, like he wasn’t taking me seriously. He said that my MRI results were normal. When he said that I felt defeated. Still no answers. He seemed unsure. Ultimately, he said it sounded like I was having a complicated migraine. Alternatively, it could be an absent migraine that causes stroke-like symptoms. I thought this was not the answer at all. I’ve NEVER had a migraine in my life. I barely have headaches. But I went with it. He gave me medication through an IV that he called the migraine cocktail. I absolutely hated the way it made me feel. I was antsy and so uncomfortable for a few hours. However, my symptoms started to get better.

By the morning on Saturday, June 21st, my symptoms were completely gone. I had full function back on my right side. I could lift my arm, make a fist, move my leg and even walk unassisted. PRAISE THE LORD! I was discharged around 11:30 a.m. I went home and hugged my babies as tight as I could! Unfortunately, I ended up back in the ER that night… the same day I was discharged. I was having episodes every 1-2 minutes for over an hour. Episodes again where my face would droop and speech would slur. Still unsure of what was happening, we decided to go to the ER. I ended up seeing the same doctor I did when I was admitted. The same doctor that I felt very dismissed by. This time he was rude. He automatically decided to give me the migraine cocktail again. This was because it worked the first time. What he didn’t know is that I thoroughly looked through my MRI results. I did my own research. I came to the conclusion that I had mild small vessel ischemic disease. I mentioned my findings to him. He replied, “Oh yeah, you might have that.” He continued, “But if you look at anyone’s brain, we all could have it.” Again… dismissing what I was saying. I was livid, but was exhausted and decided to take the migraine cocktail again. I was discharged 3 hours later at 3 a.m again leaving with no answers.

The next few days were exhausting. I continued to have episodes along with nauseousness and dizziness. I also had facial numbness and a few days where my arm wouldn’t work. I was able to see my primary care doctor on June 24th. He agreed that it could be a complicated migraine, even after telling him I’ve never had one. He prescribed me 2 migraine medications to see if it helped. Spoiler alert: they did not work.

Fast forward to July, where I finally got in to see a neurologist. This was the best doctor I’ve seen throughout this journey. He truly listened to everything I had to say and I really felt like he cared. He told me he was determined to figure out what was going on. July 16th, I finally got to see a neurologist. We talked about different things it could possibly be (seizures, stress related, TIA, MS). He even showed me my MRI which was super cool to look at. This doctor confirmed that there were spots on the left side of my brain. These could have caused what happened. He decided to start by treating me with a TIA (Transient Ischemic Attack) which is basically a mini stroke. He does not think it’s migraine related at all. For the past 2-3 weeks, I had been taking ineffective medication. It essentially made me feel 100 times worse. He’s still said that he was not 100% sure. He ordered blood work, a follow up MRI, an EEG and to wear a heart monitor for 2 weeks. He prescribed 2 new medications to try as well. A blood thinner & baby aspirin.

The wait for the follow-up MRI felt like forever. Finally on August 7th, I had the MRI. The nurse called me the same day with my results. When she started sharing the results I was so happy. She said there was no sign of a stroke! Yay! But… there is always a but. She said that I had more white matter lesions appear since my previous MRI. The next step was to test for MS. My heart dropped. I had been told all along it couldn’t be MS. My symptoms came on quickly. MS progresses over time. But at the point I would do anything to get an answers.

Tomorrow, August 18th, I am scheduled to have a spinal MRI and a lumbar puncture/spinal tap. When I say I am scared… I’m scared. Terrified. I know it is a simple test and procedure, but the unknown is still scary.

Attempting to Move Forward

I am at the point in this journey where I can’t hold all my anxiety on my shoulders by myself. I need a village. I need support. I need to know that I am not alone in this. That is why I am sharing my story because tomorrow my life could majorly change.

If you’ve read this far… thank you. From the bottom of my heart. It means so much to me. If you believe in prayer, please send one up for me. If not, just send me a virtual hug and good vibes.

-Sara