The whole summer has passed and the leaves are beginning to change. This whole time I thought I did a recap of all of my adventures over the summer. But, I now realize, I have missed informing you on so much. You have missed adventures, hospital procedures and even a new job. Over the past year, I was getting stronger and stronger as each month passed. As a teacher, I was so used to being busy and active. I always felt like I had to be doing something. In the beginning on my disorder I obviously had to slow things down. I had to learn to do skills again and learn to take it one day at a time. But, after so many gains and less hurdles I'm starting to need to be busy again. I take this as a natural sign to take the next step. What shall that step be towards?
I'm at the point in my healing that the gaps are widening greatly between seizures. I'm still seeing my neurologist every 3 months. At this point, the appointments are a check in and to discuss anything new that might've pop up. She is very happy with my progress and attitude. Over the last 6 months I've been noticing more videos on social media about people with long covid symptoms. Some of their symptoms include; tremors, headaches, fatigue, non-epileptic seizures, motor issues and even paralysis. I'm seeing these videos and the people are just getting no answers from the medical field. All they have been told is "it's Long Covid and to rest". The symptoms just randomly showed up at some point after having covid. I responded to some of the videos and asked them to look into FND. FND can manifest after medical trauma. After seeing a pattern of these videos and covid I decided to email my neurologist. I explained to her what I was noticing and to see if she had noticed a link between Covid and an increase in FND patients. She responded that I asked the million dollar question. There are so many similarities with FND to other disorders. But, when our system gets disrupted out of the blue, trauma forms and it's hard to reset. My doctor has seen an increase and sadly since FND is still so misunderstood patients will be misdiagnosed or ignored. It is common for other illness or physical injury to trigger functional symptoms or for patients to develop overlay with concurrent illnesses. We all must be our own advocate in life. If you think something more is going on, ask, go to other doctors, hospitals until you are heard. You deserve to be heard.
Prior to me getting sick we were planning to go to Iceland during that summer. But, that year had other plans for us. Sadly, we had to put vacations on hold for 3 years. More recently we have done small vacations that we were able to drive to. But, definitely nothing adventurous was planned. One of the fears when planning a vacation that required flying was being trapped with crying/screaming babies or kids. Now, I'm a parent so it's nothing against the kids. It's just the sound of them crying or screaming feels like someone is stabbing me in the head. With these sensations would I have a seizure, have paralysis, or ruin my day? Those noises are probably the only thing that I'm still sound sensitive to. I'm now able to tolerate loud music and crowded places even though I still use earplugs to muffle the noise a little. But, we thought we would take a leap of faith and finally take that Iceland trip. We knew it would be strenuous and challenging. This would be the ultimate test for me and how I will proceed moving forward. It was a night flight and I tried to be as prepared as possible. I had my earplugs, sound blocking headphones that hooked up to my phone and I brought meds with me to keep me in a calm state. As soon I got on, I immediately placed the earplugs and headphones on. If I was to hear anything first and then apply them I would only obsess about the noise making the issue worst. It worked like a charm. Coming back home, the seat behind us had a 1-2 year old who screamed from the beginning until he luckily fell asleep. In that case, as soon as I sat down I applied them both, took medicine, put on a movie I knew and added my eye mask. Some how I fell asleep which I never do on flights. It was amazing! When I woke up the child was asleep and the rest of the flight went smoothly. We want to go to Italy/Switzerland next. This was a easy 4 1/2 hour flight which was a test to see if I can handle a flight. This is really important when expanding to doing more. take baby steps before taking that leap.
Now in regards to this vacation itself it was truly the best experience. Each day involved so much walking and exploring this unique land. One thing in particular brought tears to my eyes. We had a volcano tour planned which was only supposed to be a total of 2 miles to see the lava flow from last years eruption. However, the week prior to us going there that same volcano started erupting again from a different fissure. We couldn't believe how lucky we were and that we were going to see an active volcano. When we got to the site, it turned out it was no longer a 2 mile hike. It was now going to be over 7 miles. Since we were with a hiking tour we had to do the full hike. I stayed positive and reassured my husband that I have this. They luckily provided us with walking sticks. When we first started I was thinking the sticks were unnecessary. I was so wrong. The walk was up and down mountains/hills. When it was flat, the ground was covered in huge lava rocks that you had to maneuver over. Before we got to the volcano, I was walking down a rocky mountain and I had tears in my eyes. I was so proud of myself. I was doing this. I didn't given up. I had no issues. I am strong. I'm going to see an active volcano. I'm going to see my kids faces when they first see the lava erupting. Then there it was the smoke seems like it's over one last hill. You can now start to hear bubbling as you are about to top over the hill. There it is, lava erupting from this huge fissure at the bottom of this hill. The tears form again as the heat blows into my face. The violent beauty was right in front of us. We sat and took in the experience before having to take that treacherous hike back. It was something we will always remember and so glad we made this happen.
A few days after returning from vacation I had a medical procedure scheduled. My GI doctor knew my history and was prepared to do the procedure in the hospital. The last time I wasn't in the hospital I had multiple seizures coming out of anesthesia. They ended up calling for an ambulance and I was admitted to the hospital for a week. Now, they are prepared and aware. I told the doctor and the anesthesiologist of the possibility of a seizure, not to worry and don't admit me.
The day before my procedure I was feeling good and on my way to brunch
This was a new procedure for me and perhaps that's why I was s nervous going into it. Right before wheeling me in they gave me meds via IV to settle my nerves. The procedure started a little after 9 AM and only took 30 minutes. I don't remember very much afterwards. The only things I remember is saying "cold" and hearing my name or someone touching me. Turns out I began having chills which triggered a seizure. I also wasn't waking up from the anesthesia. I wasn't responding to my name. Meanwhile my husband was getting just updates since I wasn't conscious yet. He was told the procedure went good, then I had a seizure, she's not waking up, and lastly we may need to admit her. Now, remember the doctors already agreed that they won't admit me. Turns out they sent me for a CT scan post seizure which was requested by the neurologist on call. My husband nor I had any idea of the test. The next thing my husband hears is that I was now admitted. They were concerned that I wasn't waking up not that I had a seizure. I din't wake up until after 4:00. I was very weak, still tired and in some pain. When the nurse came in, she mentioned that i'll be getting an MRI soon. That's when I found out about already having the CT scan. I denied the MRI because I knew it wasn't going to show anything. Plus, if I get an MRI I have to be sedated. After being a sleep all day I didn't want to be drugged even more. My stay was short luckily since I was able to bounce back the next day. It turns out I was on the step down ICU floor and no one even told me. So now I have another warning to tell surgeons for next time. People with FND can show an increase in symptoms or even have new symptoms show during illnesses, stress or strong emotions to name a few.
This is about 9 hours post procedure. I woke up and realized I was admitted
I'm now recovered fully from my procedure and school has begun for my kids. My goal in the spring was if I did well on vacation I will look into a part time job. Well, that was a success. So what will i do? I'm a very social person and definitely want to be close to home just in case. I was thinking about a few options and got super excited. This is a huge step. I never would've thought that I would be even able to work again if you asked me 3 years ago. I really thought my life was over. But that was then and this is now. My friend owns this cute shop 10 minutes from me called Grazing Affair. She makes the most delicious fresh focaccia sandwiches and grazing boards of all sizes. Everyone has been so friendly and welcoming. I love feeling important again and helpful. No matter how low you feel, please keep a little hope that things will improve. Think you can and you will.