I want to start by expressing my gratitude. THANK YOU for all of the love and support after sharing my story. I am still speechless by all the messages and comments I received showing sympathy and care. I even had a few reach out to me sharing their own story that was similar. I never thought I was deserving of love and support from others. This just goes to show that everyone needs a village… and mine did more than show up. THANK YOU, again, from the bottom of my heart.

I never really know how to start these things. Do I start with the good? The bad? The ugly? I’m not sure. I know that I don’t have to share every little detail of my life… but I don’t want to suffer alone. I know it has been quite some time since I have shared an update. I honestly have been trying to write this blog post since October. Every time I sit down to write, I feel like I am reliving everything. Which is the most difficult because I am still trying to process everything that has happened the past 6 months.

The past 6 months left me feeling hopeless. There have been times of confusion, sadness, anxiety, loneliness, frustration… but there have also been times of happiness, peace, and calmness. I am not going to sugar coat it and say that life has been sunshine and rainbows… because it has been far from that. Anyways, enough of my rambling, there is more of that to come.

August

The day after I shared my story, I underwent a procedure for a lumbar puncture. This test was conducted to check for Multiple Sclerosis (MS). The procedure was honestly not too bad. The worst part was the numbing. The even better part was I got to relax and lay flat for 2 hours after. As a mom of three, I took my full advantage of that. After the procedure, they told me to drink a lot of caffeine to avoid getting a spinal headache. So they gave me a knock off brand Coke, which was disgusting. Then I made myself a coffee when I got home. They said that a headache is normal for 24 hours after the procedure, but anything past that is not good. Unfortunately, I had an excruciating headache for the next 3 days after my procedure. I had my procedure on a Monday afternoon and I waited until Friday to call the hospital. They asked me if my headache hurt worse while standing or laying down. I told them that if I laid down, after a few minutes the headache would go away. But as soon as I got back up, instant pain. This meant that I probably had a CSF (cerebrospinal fluid) leak. Yay me. I went back in to the hospital on Friday afternoon to have basically another spinal tap. They drew blood from my arm and took that vile of blood and put it into my spine. The blood from my arm created a blood patch over the leak on my spine. I felt better instantly after that procedure. I just wish I wasn’t stubborn and didn’t wait as long as I did. My mood was low throughout the week because I was in so much pain. Still, we ended the week celebrating Cooper’s birthday with family.

Waiting for the results of my lumbar puncture felt like years. I was constantly checking my chart to see if the results were uploaded. Slowly, results started coming in after 10 days. Obviously I didn’t know what anything meant, so I patiently waited for a call from my doctor. The nurse told me that my results all came back normal. That news was a weight lifted off my shoulders. No signs of MS! I had prepared myself for the worst case scenario only to be told everything was fine. Even though I do not have MS, it still leaves a big question mark. What the heck happened to me? Why are there still no answers? My doctor didn’t seem to want to move forward with anymore testing, but I pushed for it.

September

In mid September I did a 72 hour EKG at home. While it was nice to be in the comfort of my home, it was still annoying and uncomfortable. If it wasn’t a stroke, or MS, it had to be seizures. I was sure of it. I had already done an hour long EKG but nothing was found. During that hour EKG, I didn’t experience any of my episodes. These include mouth drooping, facial numbness, and staring off into space. When these episodes happen, I am aware of what’s going on around me but I’m unable to move or speak. Yet, during the 72 hour EKG, I documented 7… SEVEN episodes in that 72 hour time period. Whenever I felt an episode coming on, all I had to do was push a button on this device. After the episode I would write down the time, what happened and what I was doing. There was also a video camera watching me 24/7 so my episodes were also caught on camera. And guess what those results were? No sign or activity of seizure. Back to looking for answers… again.

After I got the results from my EKG, I decided to get a second opinion, only to have another not so great experience. At first I liked the new neurologist I saw, but as he kept talking I was like wait, hold up. He ultimately started saying my condition was mental health related. He mentioned something called FND (functioning neurological disorder). Functional Neurological Disorder (FND) is a real neurological condition where the brain’s “software” malfunctions, causing physical symptoms like weakness, tremors, seizures, or sensory loss, despite an otherwise undamaged brain structure (the “hardware”). It’s a problem with how the brain sends and receives signals, leading to real distress and disability, often triggered by stress, trauma, or other neurological issues, though the exact cause isn’t always clear. Diagnosis involves specific neurological signs, and treatment focuses on retraining brain pathways, often involving physical therapy, medication, and therapy. I understand that stress and mental health can make your body do crazy things, but no. I was not going to believe that. I told him that yes I do struggle with my mental health, but that it is under control. Compared to where I was 2 years prior… a total difference. I told him 2 years prior I was at Sycamore Springs. I was severely struggling and since then I had gotten the help I needed. I kept explaining that I’ve been seeing the same therapist at least 3 times a month since then. AND I have had the same doctor managing my medication. That wasn’t good enough. He wanted me to completely change my medication and have me restart all over again. Absolutely not. Changing medication is not fun. For anyone. I refused because at that point I was doing great, besides the health scare. I wasn’t in a state of a crisis where I thought this was mental health related. Once I found out that this doctor did the same thing to a friend of mine with some of the same symptoms as me… I never went back.

October

At the beginning of October I was able to see a neurologist in Indianapolis. I was feeling very optimistic that this doctor would have some answers for me. I loved this doctor. She was caring and truly listened to everything I was saying. She even took time to really study and look at my chart. Unfortunately, she also did not have any answers for me. She said that she was kind of agreeing with the second neurologist I saw that it could be FND. After hearing her say that, I was like well maybe it is. I then went through a phase where I was blaming myself for my condition. I wasn’t focusing enough on my mental health and therefore, I caused all of this to happen. I still struggle with this today, but I know as time goes on I will realize that none of this is my fault.

As October went on, I was hopeful that things would start to look up for us. But God had other plans. I am not going to go into specific details on this, but Peter randomly had a back injury. We still don’t know from what, but it caused him to miss an entire month of work. I am not sure if all of you know, but Pete is a UPS driver. A lot of lifting, bending, walking, getting in and out of the truck… not an ideal job for someone with a back injury. He was able to be put on short term disability, but it drastically cut his pay. We were unsure of how long he would be off work, so I frantically started looking for a job. I have been home with the kids since May of 2024. I knew having his one income be cut like that, wasn’t going to be good.

I have known for a long time that if I returned to the classroom, I would want be at my kids’ school. Luckily for me, I also went to school where my kids did and I know all the staff. I said, “I would love to finally come work for you.” I then received the “FINALLY!” text… then asked me, “When can you start?” I don’t know if it went exactly like that, but you get the point. I started working late October 3 days a week. It has been great being back at work… with adults haha. I’ve noticed it keeps me busy and my mind off things. I’ve also made some pretty great friends who I am so thankful for.

November

We were SO excited for November because we had been planning a Disney World vacation for 5 years. We were set to fly out on November 9th and 4 days before, I ended up in the ER. At this point things were honestly going well (knock on wood). I had noticed that my episodes had significantly decreased. I went from having 4-6 a day to 2-3 a day, sometimes none. Things were finally getting better only for it to quickly go downhill again. On the night of November 5th, I had another episode. It was the small episodes I explained earlier… it was a big one. This time I was fully convinced I was having a stroke. I kept replaying that day in my head trying to remember if anything could have triggered it. But I couldn’t think of anything. I wasn’t stressed or worried about anything. Before it happened, Pete and I had just finished chatting about our day and watching funny Tik Toks. We laid down and I rolled to my left side. Pete took hold of my left hand and after a few seconds it went completely stiff. He noticed because my hand tensed up. After that my body felt paralyzed. All the stroke symptoms started happening and they happened fast. Face drooping, slurry speech, blurry vision, right sided numbness and weakness. It was like an out of body experience. I kept yelling at myself in my head to make it stop, but I couldn’t. I couldn’t speak. I couldn’t tell Pete anything. I knew he was terrified.

I’ll keep the ER trip story short, because we still didn’t get any answers. My CT came back normal, blood work came back normal. Everything was normal. But you know what? I WAS NOT FEELING NORMAL. I had the idiot doctor I had the first time I was in the hospital, so that made me mad. He was still the same arrogant doctor from before. He tried to push the migraine cocktail on me again and I refused. “But you have a complicated migraine.” No, no I do not. I did, though, have an excruciating headache for the next 6 days after this episode happened. Not only was it for 6 days, but 3 of those days we were at Disney. Yes, we still were able to go to Disney. I was beating myself up in the ER thinking I had just ruined our trip. But God knew we needed that trip. Disney was so fun and the kids had an amazing time. It was nice to focus on the fun and not worry about all the stuff happening back at home. Oh, did I mention that Pete totaled his car the day after I was in the ER? Yeah, that happened.

As November went on, little things kept happening. The week of Thanksgiving was hard. Nora had croup. I missed our annual shopping trip to Michigan City. I got pink eye. Cooper had a terrible cold. Purdue football lost to IU (anyone surprised?) Pete lost his wedding ring during work… in the snow. And the week after Thanksgiving, Amelia had the flu and missed an entire week of school. I was DONE at that point. I was like someone PLEASE get me to 2026.

December

I never thought we would make it to December, but here we are. Not only is December always extremely busy, but it is very lonely for me. Thankfully Pete was capable of going back to work in early November, but peak season was soon to start. This peak season for UPS has been the absolute worse. The big snow we Thanksgiving weekend but them 2 days behind. Pete wouldn’t get home until 9:30 PM or later every night. The kids missed him. I missed him. I was feeling so lonely and just sad. I was exhausted from being mom and desperately wanted time to myself and with Pete. I am happy to report that we made it through and already dreading next peak season.

I saw my primary neurologist in early December as a follow up from my big November episode. My doctor told me he still had no answers for me. He didn’t know what else to do. He told me to get a second opinion. I told him I’ve had 3 opinions and one of those was from Indy. He was surprised that I still didn’t have any answers. He set up a repeat MRI to compare to my one in August. The MRI results showed a slight change, but nothing significant. Although having no significant change is great, I am still left with no answers. I am still having small episodes daily and I’m trying to find triggers, but I am left with nothing.

2026

As much as I am so ready for 2025 to be over, 2026 still comes with a lot of unknowns. My goal is to stay positive and hopefully find answers. I want a medically boring year… if that is even possible.

If you have read this far… thank you. As hard as it is to share all of this, it helps to get it all off my chest. Like I said in my first post, it takes a village and I still need my village. Hopefully my next update is somewhat of a better one. But anyone is more than welcome to reach out anytime. Keep the prayers and good vibes coming. It is very much appreciated.

Happy New Year and I love you all, so much.

-Sara