In one year: My journey with Guillain-Barre Syndrome

March 2021: Vaccines are here

After the flood of the COVID-19 pandemic took its toll and took its lives, the science of America rushed to their vaccine. I, myself, was too excited to get a shot that would help prevent the disease getting to me, while also helping prevent it from getting to my loved ones. I signed up to receive the vaccine the first day I was able, on March 31st, when it was open to any adult, not just first responders and those in the medical field.

I felt I was being a smart citizen; I was being a person who wanted this pandemic to be over. I also knew that I had umpteen medical allergies, so when Johnson and Johnson announced they had a vaccine, it was a no brainer for me as my family and doctors recommended that one was to be the one safest for people like me.

The day came, March 31st. I left my office in Circleville, Ohio and drove 20 minutes to Adena in Chillicothe for the mass vaccination clinic. I filled out my form and wrote that I had allergies to many medicines, so I stayed a little after my shot to be watched.

The process of getting the shot was not so bad actually. I was excited, so I, a not-so-social individual, was highly talkative to the soldiers giving the vaccines.

We talked about the area of Circleville and they asked me the necessary medical questions; they made the process easy. I was told to sit in the after area for 20 minutes before a doctor would release me. I did as I was told and when the doctor checked me afterward, I was fine...shockingly.

I was not expecting my body to react decently. I was full-on thinking I would have some sort of reaction that moment. Little did I know that reaction would come a week and a half later.

April 2021: The reaction

I remember getting out of the shower one evening and feeling a numbness on the back of my right thigh. I thought to myself that it must’ve been a bruise, but there was no mark. So, my conclusion went to an inside-the-body bruise and I left it at that.

A few days later, the same feeling overcame both of my legs in entirety. Concerning, yes, a little. But as I ran everyday and took a hike the day prior, I assumed it was muscle soreness. Only the next day was the next phase of concern — facial numbness.

This was the point I was scared as I could not move my mouth or eyebrows. I called my mother to tell her the latest. She told me to call my family doctor, which I did. I went to an appointment that day and cried to her because I was scared of what was happening. I had no idea what was going on with my body. She, the wonderful person she is, hugged me and told me we would figure it out together.

I followed my routine the following day and went to work. It was only three hours into the workday until I was lying on my office floor, crying in pain because lying flat on the hard ground was the only way I did not have mind-exploding pain in my knee joints. Again, I had no idea the cause of this.

I called my doctor again and they told me they would get back to me. I called my mother in tears, which caused her to go Mama Bear to the doctor’s office receptionist, and that afternoon, I had an appointment with a neurologist.

Terrified, my mother drove me to the emergency room at a hospital an hour away from my apartment. It took all my bravery not to break down crying, just out of plain fear. His name was Dr. Even Wang and he calmed me with his monotone voice as soon as he walked in the room. He asked me questions for his records; “What happened?” “When did you get the vaccine?” “How soon after the vaccine did this start?”

I answered all of them as quickly as he asked. It was then time for tests...tests I was not fond of.

He put gel on my legs and arms, followed by something I called “the taser.” The shocks were to check my nerves’ responses to such an abrupt change.

It was done on every joint in my limbs. Then, he moved to the facial muscles, which resulted in a test that was worse than the taser, something I did not expect.

Dr. Wang had a tiny needle that he had to stick in my eyelids and below my eyebrows to check the responses my nerves had in the forehead area. The same action was actually done in the forehead.

Although those tests seemed as though they were an hour long to me, the reality was only a few minutes before he told me I had an expected case of Guillain-Barre Syndrome. He double checked his thoughts in a group chat with some of his other doctor friends.

Before my mother or I could ask what happened next, he had me admitted to the emergency room. He proceeded to leave the room and I held back my tears just long enough for the door to close before I collapsed on my mother.

April 2021: Five days

Before I knew what to think, I sat at registration and was told a bed was ready for me...that was all within a time frame of 20 minutes. In those 20 minutes, I had to update my boyfriend of the events while my mother was on the phone with both my dad and her boss. I could not even think about work. I could not even think.

Five days I spent in the hospital. Five days I spent listening to my hospitalist tell me I had respiratory problems, which resulted in respiratory tests. Five days I spent listening to my hospitalist tell me I was going to need a plasma transplant and I had possible heart failure, only to find out the IVIG treatment was working just fine. Five days I spent with needles in my arm, only to be removed and replaced multiple times due to the inability from nurses to find my veins. Five days I spent crying to my mother over the what ifs and scares of treatment.

Five days I overheard nurses in the hallway whispering about the rare admit who had GBS and was so young. Five days I was cornered by nurses in the hallway because everyone wanted to be the first to figure out my case.

One day I spent on a metal bed with a needle stuck in my spine with a lumbar puncture procedure to see if the GBS was spreading. I cried the entire time of the operation because I could not see what was happening to me as I was lying on my stomach, but I could feel the stabbing pain. The surgeon’s assistant was a mother. I could tell because she was rubbing my shoulders, holding my hand and telling me it would all be okay soon enough.

I had more flowers delivered to me than I could count, but that managed to brighten my mood a little every night when I would wake up three times at ungodly hours so my bloodwork, weight and respiratory could get checked.

I had an MRI to endure at 4 a.m.,10 hours after they told me I would get it.

On the fifth day, my neurologist told me the IVIG treatment worked and I would not have to get a plasma transplant. Those were the happiest words I could have heard that day. I went home.

It was lovely that I no longer had pain in my joints. I no longer had numbness in my face or legs. I was joyous. And with that joy, I was just happy to start running again and being active after five days of nothing but sitting in a hospital bed.

I had a follow up appointment with Wang about a week later and I was good to go. I was happy and relieved. I thanked him genuinely for everything he did to help me and I walked to my car and broke out crying in tears of joy. I was going to be alright.

The emotion of unaltered happiness went away about three weeks later.

May 2021: Recovery comes and goes

In those three weeks, I was very active and ran a mile or two a day. It was a normal day after work when I went to the county fairgrounds to go for my daily afternoon run when I noticed another odd feeling, but this feeling was different and unknown.

About a mile in, my toes started to feel like they went to sleep, then the feeling escalated to my shin and up to my knee. I stopped running immediately and tried to shake my leg out to see if it would “wake back up.” It never did.

I walked to my car and called my mother again. She advised me to call Wang and get another appointment. The next day, I was back in the neurologist’s office getting more taser and needle stab tests...I lost my ability to be surprised at this point.

“It’s just a waiting game,” Wang said. “You are going to have to wait until GBS is done and your body heals itself.

“Avoid exercise and anything that causes that tingling feeling.

“If it continues to move up to your arms, we will do an MRI and maybe more tests, but you should definitely avoid crowds and wear your mask because if you get COVID, your GBS will accelerate to the point I can’t do much.”

That’s it. I was back to being inactive and doing nothing, something that drove me insane.

I made my attempts with short walks. Tingling feeling. Two blocks, maybe? Tingling feeling. Let’s try ab work. No tingling yet. Okay, move on to leg lifts...tingling feeling.

Nothing. I could do nothing unless I wanted to do more treatment. All I could think to myself was, “God, why me?”

I did what I was supposed to. I got the vaccine. I had no complaints about getting the vaccine. Why on Earth was Guillain-Barre affecting me?

I wanted to be active more than anything. I was a collegiate and professional softball player and am a softball coach, so being inactive was the worst thing, in my opinion, that could have come to me.

Days went by, then weeks, then months. While all that time went by, I was giving into my body, understanding that it needed to re-heal itself and rebuild my nerves. So, I stopped trying to work out, but I was still experiencing episodes of pain, tingling and overall depression from what could happen.

Just to make things worse on my mental health, I had to figure out what skin condition I had and I was in the process of getting biopsies throughout the week, but that is a whole different story. Point being, I was tired of getting things stabbed into my body.

July 2021: Boosters come

The COVID-19 booster announcement came out one day later in the year and my first thought was, “Can I get this?”

I had a call with Wang and he told me to steer clear of the booster, as it may cause my GBS to increase again.

“Also, wear your mask because if you get COVID, the GBS will rise to a point I can’t help you,” he told me again.

To me, that meant that if I did catch COVID, I was going to be paralized...but I could not get the shot either? A rock and a hard place.

So, my weekends were spent staying in with my boyfriend, avoiding going on trips and visits with my friends and overall, avoiding the fun of life I previously had of concerts, hikes, walks, and just exploring like I love to.

Johnson and Johnson kept releasing their press releases regarding their vaccines and booster shots. I was at work one day when I got a text from my boyfriend.

“Did you hear the Johnson and Johnson news?”

Heat-dropping, I immediately went to Google and searched for the company by name.

The headlines I saw: “J&J states their vaccine can cause GBS,” “GBS: What to know before getting the J&J shot,” “How GBS can be a side effect from J&J’s vaccine.”

Are you kidding me?! It took 99 other people for this horrible thing to happen for J&J to release a statement that 100 people had been affected with GBS because of the J&J shot. I was furious.

I spoke with some family and friends in the medical field to learn about a program that was giving financial compensation to people who were badly affected medically from a COVID-19 vaccine. I was ready to fill out some paperwork.

Through the paperwork, I learned that no vaccine creator could be held liable for any harm to an individual because of the shot due to a loophole that they were asked by the government to create the vaccine so fast that they were unable to test it before giving it to the public.

I learned of another program and went through days of filling out paperwork to see if I would get anything to benefit from the pain that was caused to my family and I. I sent in paperwork and months passed. Nothing.

I was not really expecting anything though. By expecting nothing, I could not be disappointed. But I had a small hope that some good would come out of this. It was a bleak outlook.

August 2021: A summer of trying to get better

I had episodes of joint pain at a friend’s wedding to the point I could not dance and just had to sit at my table and watch everyone else have fun on the dancefloor. I missed a trip with my best friends because I was too scared I would experience a GBS tingling and would hold them back from the fun they wanted to have. I missed my best friend’s birthday party because it was traveling out of state for me and I was too paranoid to catch COVID.

To help myself, I went to physical therapy to see if I could decrease the pain, or speed up the recovery process. The few weeks I went, it helped greatly. I was working the right muscles, yet it was also disheartening and embarrassing for me, a retired professional athlete, to be exhausted from leg lifts. But, those leg lifts were working parts of my body that were too weak, almost beyond repair. I was enjoying my weekly physical therapy visits until one day, I got a call from the office saying I was unable to attend anymore because my insurance had stopped that treatment.

After getting off the phone with my insurance, I learned there was a miscommunication between them and the physical therapist and that they needed to fix it from the PT’s office. Guess what never happened? That’s right; I didn’t get to go back because no one fixed the mistake and I was no longer getting PT access from my medical insurance.

The emotional torment was the hardest for me. I could live without the adrenaline of exercise in order to help myself heal, but what hurt the most was listening to others make suggestions on how to have fun and me having to deny them all because I physically would be hurting. I felt as though I was holding so many people back from how they wanted to enjoy their lives.

The amount of times I cried because I was terrified, guilty or just plain sad is too many to count throughout the first six months of recovery out of the hospital. Every time I felt that pain behind my knees, I cried. Every time I felt my legs starting to tingle, I cried. It was a pure fear that reached the deepest levels in my body. I knew that one instance of pushing too hard could make me paralyzed for the rest of my life, and that pressure, if you can imagine, puts such a wear and tear on a person.

October 2021: The six-month mark

Once October hit, I got curious as to how long the recovery process is for a mild case of GBS. I looked online to learn that the recovery period is anywhere from six months to a year. I remembered Wang told me a year minimum, but I was holding onto the fact that I was in October and that was the sixth month since I was released from the hospital. I was holding on to some hope.

I had a brief call with Wang in the second week of October in reference to eye socket pain. I thought it was GBS related, but he informed me it wasn’t. He prescribed me some muscle relaxers and also stated that I was too many months after my COVID vaccine that I should maybe think about getting the booster.

Wait, I thought I was not able to get another vaccine in my life, let alone a COVID shot? I have been through the terribleness of that once.

After asking him about my concern, he told me to definitely stay away from Johnson and Johnson, that devil vaccine who caused this.

“You have no COVID fight in you anymore. Just wear your mask, avoid crowds and maybe when your symptoms go away a little more, think about getting the Phizer booster,” he told me.

All that went through my head was staying away from those who were unvaccinated...great. I was scared to leave my house, let alone go anywhere without a mask because how was I supposed to know who was vaccinated and who was not? Anyway, it was just another burden for me to bear.

The month of October became a month of paranoia. I was paranoid to catch any germ of COVID-19 because I knew I was unable to help myself with the booster. My stomach twisted about getting a booster shot because of the ‘what-ifs’ of GBS. I was paranoid that if I did catch COVID, I was going to be fully paralyzed. I was paranoid to work out at all out of fear of feeling the numbness in my legs again.

So, to help with all of my fear and paranoia, my mother and I took a mother-daughter trip to Lexington, Kentucky to settle my nerves...literally and figuratively.

The trip was everything I needed it to be. It was a time of laughing, relaxing and spending quality time with my mother that I did not realize I was in need of. We spent our time visiting the local coffee shops and bars, seeing the art around the city and, of course, experiencing the horse culture in Kentucky.

We drove around the outskirts of the city to see the farms where Kentucky Derby winners were born and raised. We experienced the Kentucky Horse Farm and learned all about the history of horses in Kentucky and everywhere in America.

To end the trip, we dove into the libations of Kentucky, their bourbon. It took one drink for my mom and I to look at each other in disgust with the taste of straight bourbon. It was not on our pallette, so we found some food to cleanse our tongues.

November 2021: Add in vision loss

The day I returned, it was Oct. 30. Two days later, November had begun and I knew I had to work my muscles if I were to recover from GBS.

I went on a walk with my boyfriend and our dogs around our housing development one afternoon in the first week of the month and nothing felt out of the ordinary. My legs felt fine.

I thought to myself, “Okay, well, what else can I do now?”

A couple of days later, on Saturday, I went for a run. I still had a little paranoia, so I did a half run/half walk tempo-type run, just in case I was pushing too hard with my legs. I did that for a mile and then walked for a mile until I got home. I felt no different.

I thought to myself again, “Okay, a run felt fine. What else can I do?”

The following day, my boyfriend and I went to the gym. I started my workout with arms and did my lifts. I felt normal. I was slightly fearful of doing cardio, but my boyfriend reminded me, “You are supposed to work through the tingling.”

After shaking my leg out from the initial feeling of a tingle, I decided he was right and I headed toward the treadmill. I did the same thing I did the day prior’s workout, half run/half walk. I felt the tingling slightly in my toes, but I immediately stopped because, to be honest, I was terrified to push through. I was terrified my legs would go numb at any second. I had to go to a walk right then and there.

After a mile of that, I was done with cardio and we left the gym. On the car ride back, my head was calm again.

“Gym day, check. Run, check. Cardio, check. Everything is fine. Maybe this is the beginning of recovery.”

But, I also was experiencing another “Of Course this Would Happen to Emily” moment, and that moment was the inability to see out of my right eye for a week. Um….what?

After a visit, which I thought would be quick, to the eye doctor, within 10 minutes, I was on my way to the ER again. I had optical swelling in my eye’s nerves. He was a young buck at the eye doctor, overreacting slightly with emotion because I was the first “interesting case” he had seen.

He knew of my medical history with GBS and hospitals, so the ER was his last resort. It came out to be the only resort after he made multiple calls to avoid the hospital for me. I give him thanks for at least trying.

Being by myself this time, I had no choice but to suck up my tears from fear and check myself into the ER for the second time this year. PTSD was flooding my body and my emotions wanted to let loose with crying, but I just had to get through what was about to happen.

I used to say I was not looking forward to turning 26, but with just a week before my 26th birthday, I realized that my 25th year of life sucked for my overall and mental health and 26 could only get better….I hope..

My mother ended up getting there just before I entered for the evaluation, and moments later, I was getting put in a room for more evaluation, blood work and another MRI experience.

I hated MRIs. I hated them with every fiber of my being because my first and only experience with an MRI machine prior to this was at 4 a.m. in the hospital in April, relating to GBS checks.

The 4 a.m. MRI was the worst. It was dark, I was in a confined space and the loud noises were unsettling. I could only hope this experience would be better. I was a little optimistic until the hospital tech this time told me I would be in the machine for an hour….AN HOUR.

I am not a claustrophobic person, but an hour in a small space, unable to move, just doesn’t sound fun.

It was a little better this time though because the lights were on and I was able to see my coffin-like tube, plus, the addition of 80’s classic rock playing in my headphones made it bearable.

Halfway through, I lost a little hope as they pulled me out to inject me with MRI dye. I overheard a paramedic tell the tech that “they wanted an IV in her.”

My instant thought went to, “If I am getting an IV, I am getting another hospital stay.”

After 20 minutes of both a tech and a paramedic searching my arm for a vein to stab, the paramedic said, “That probably poked a little more than usual, huh?”

My over-it attitude and sassy self could only respond, “I am used to it.”

They pushed me back in the machine and a few little tears dripped from my eyes because I had been through this before and I was expecting the worst. I did not want to stay in the hospital again.

Apparently, all of the optical swelling was a false alarm as the hour’s worth of MRI scanning showed no signs of swelling. I had endured PTSD, more IV stabbing, blood being drawn, and nurses who gave me attitude for nothing.

The nurses talked down to my mother and I as if we did not know how a hospital ran, or we didn’t know what to do within a hospital. Plot twist, they had no idea.

My boyfriend waited until midnight with me for them to take the unnecessary IV out of my arm, and I was relieved to be sent home, only to look forward to an eye specialist determining my abnormal eye the following day.

The following day was a bit of a rushed blur. The day started with working from home. I had prepared ahead of time out of paranoia and told my coworkers I had appointments and would be off and on the computer all day. I got most of what I needed to get done, done. At 11 a.m., it was time to drive to see the ophthalmologist close to my house. I knew of the worst that could happen, so I planned ahead and packed a “hospital bag,” just in case things would go south quickly.

At the appointment, I did the standard eye exams; they took photos of my eyes and my mother and I waited for about 45 minutes in the doctor’s exam room before she came in and told me that what she saw in my eyes was something she did not have the equipment to work on, or fix.

My next stop en route of this issue was going to be Ohio State University Medical Center.

As I stated previously, it was all a quick blur. My mother drove me back to my house, where my boyfriend had my hospital bag ready to go, along with my computer and a book. My mother grabbed the items and we went back to the car.

The sheer shock of what was happening, I knew I was used to, but the scare of it was still there.

The what ifs were still running in my brain:

“Is this related to GBS?”

“Is this the beginning stage of going blind?”

“Is this something serious to get surgery?”

My mom saw my emotionless face and we stopped for food on the way to OSU. Once we arrived, we made our way to check in, and somehow, we passed all those in line and the waiting area and got straight to initial exams.

It might have been that my mother and I were telling everyone we were sent there by an ophthalmologist, or it may have been that we were dropping the name of one of the only two neuro-ophthalmologists in the state, Dr. Hirsh.

One thing I can say is that because I stated I could not see out of one eye, they allowed my mother to be with me through the entire process to “aid in my walking.”

Within the last 24 hours, I had been to an optometrist, been to an ER, gotten an hour-long MRI, seen an ophthalmologist, and was now at a top hospital in the state. What was going on with my eye?

We were sat in a small area for people specifically with eye issues. Two ophthalmology students found us and took us into a corner room for more eye exams...the same ones I had done earlier that day.

They developed a pattern. They would come in, run a test, leave and come back about a half hour later. They had to discuss each finding with Dr. Hirsh, as they were his students.

For about four hours we were in that pattern. At about the 8 p.m. mark, the students came in and told us that no one could find us in this room and they had some discussions to do with Dr. Hirsh and the hospital’s neurologists, so back to the sitting area we went.

Another hour came and went before a student neurologist came by and told us I was going to a “holding room,” rather than being admitted. She also informed me that I was going to need to get another lumbar puncture. It took everything for me not to cry.

In my room with only a curtain instead of a door, I could hear people telling doctors they needed pain relief, but it had to be oxy because they were allergic to everything else. I heard drunks snoring deeply in a haze. I listened for anything I could to distract me from what was to come.

I hated the lumbar puncture before. I cried silently the first time because I knew what was happening, but I could not see the giant needle in my back.

This time was different. I had my expectations set, but those pain levels were outdone by the student who was performing a lumbar puncture for the first time.

I felt the original numbing needle. “Not so bad. Just like before.” I felt the initial poke. “Okay, we are still running the same course.” It all went off track as I felt the needle go deeper than the numbing medicine went and I felt a long and abrupt poke through my back muscles. Tears were flowing silently as it was taking its toll on my fears and pain levels.

Of course, my mom was not in the room because needles made her faint, but this was a moment that I had no one. No nurse was holding my hand this time to tell me it was going to be okay. It was just me, and three students trying to figure out where to get my spinal fluid in three different spots in my muscles before realizing they were in the wrong area and needed to move.

“Go get more numbing,” the senior attendant yelled to one of her fellow students. That was the moment I knew it was all a mess up and I was not done with this horrible procedure.When he came running back, the initial poke of numbing felt the same.

“Are we almost done now?” was all I could think. I tried distracting myself again with things I heard outside, and it worked a little until it was time for the needle to come out of my body. By the book, the needle is supposed to be pulled out of the spine nice and slowly. The students forgot about that piece of information I am guessing because all I could feel was a jerk of sharpness before instant relief.

They told me I did a good job and asked me how I felt. “I am pissed,” is all I could murmur out of my mouth without cry-speak taking over my statement.

Once they left the room, my mom came in and gave me a hug as I cried on her shoulder from pain, from trauma and from the irony that the one procedure I hated had to happen twice to me in one year.

This day absolutely was terrible. And it still was not over. I had to wait for lumbar puncture results.

At midnight, a nurse came in with results. My mom was in her car trying to get some shuteye while my boyfriend was in my room holding my hand as I was trying to sleep. The doctor came in to tell me I had high protein and high pressure in my head, which was causing my loss of vision.

He asked me about my allergy to sulfa drugs and how it affects me because they wanted to give me a medicine that had similar properties as sulfa drugs. I had my mom immediately on the phone because I was an infant when I had my reaction.

After stating my reactions were hives and rashes, the ophthalmologist team decided the risk was outweighed by the medicine because it was the only medicine made to help reduce optical swelling.

Of COURSE I would have to risk an extreme allergy to fix another problem in my body. They gave me a Benadryl before the medication to prevent any what ifs that could happen.

I don’t know if it was the medication, or the mix of Benadryl and the medication, but three hours later, at 3 a.m., my left arm started to move almost possessively in my sleep as I was unable to control its movements.

At that point, my boyfriend was long gone and home because my mom went helicopter mom and took over after they announced my medication. The flinging of my arm woke both her and I up in a panic and she went to get the nurse. The nurse brought a neurologist and no one understood why my arm did this, but with some IV-induced Benadryl, the arm movements stopped.

Not to mention that specific IV was ultrasound inserted, so it went a little deeper than most IVs and caused just a smidge more pain. After that lumbar puncture though, what else is more pain in my body other than an obvious?

The long night kept rolling as drunken snores kept my mother and I awake, drug-deprived patients and young OSU students explaining their latest bar injury to doctors. I may have gotten two hours of my sleep, and for my mom, none.

The following morning, we were expecting to leave early after a team of neurologists would come to talk with me, but they never showed, so we waited.

We waited until 9 a.m. when I was transported to the optometry floor for more tests. We waited as the team of ophthalmologists were discussing with the neurologists to see if it was GBS or not, only to have the allergists added into that discussion resulting from the allergic ingredient in my medicine.

They discussed it for about five hours. We learned at that five-hour mark that the neurologists showed up earlier that morning, but both my mom and I were in such a tired haze that we had no idea.

The final decision came back that I would take the medicine, have Benadryl at the ready at all times and I would see Dr. Hirsh at his office within the month.

It took 29 hours for them to decide that.

Timeline update

So, where are we at in the timeline of 2021? We had GBS treatment in April, then some episodes spanning throughout six months. We had an unknown cause of eyesight loss in November. What more could go wrong before Dec. 31, 2021?

One more thing.

November 2021: Ending the fall with more pain

Two weeks after getting released from OSU, I decided that it was about time I take care of something I experienced called TMJ. TMJ is the dislocation of one’s jaw and the popping of it together when your jaw reaches full opening. In more scientific terms, TMJ stands for temporomandibular joint dysfunction.

I had TMJ for about three or four years, but kind of dealt with it and looked at it more as an inconvenience rather than a problem. It was not until late fall 2021 when I started to experience pain in my jaw. And when I say pain, I mean immense pain. I would bite an apple and the left side of my face instantly felt as though I had fishhooks in my back molars and someone was ripping it forward in an attempt to put me through an experience you would only see in the “Saw” movies.

The dentist was not much help. They referred me to a specialist in Columbus who would “probably want to do surgery.” Instead of having jaw-removal surgery, I decided to try cheaper and less painful options...or so I thought.

I first went to my chiropractor an hour away. I trusted him. He was a softball parent, so he knew the reasoning behind all of my previous back injuries. He is a good man and I enjoyed talking with him about softball.

I walked into my appointment expecting just a “pop-and-go” appointment. He was quick to inform me that my expectation was not going to happen.

After informing him of the roller coaster of this year’s happenings in health, I stated firmly that I hated needles now (for obvious lumbar puncture reasons) and had lost a lot of trust in doctors not hurting me.

The chiropractor’s face showed sympathy as he said, “Well, you may not like me today.”

I asked him what today’s work was going to be.

“Well, I am going to start with the jaw pop, then we will move to a massage on both the outside and inside of your mouth, aiming at those swollen areas, and move on to a pounding gun. The last thing of the treatment will be needles.”

As my pupils dilated bigger than my eye sockets, he noticed needles were not my choice of treatment.

“Trust me, the needles will be the least painful of the treatment”

“What does that mean?” I thought to myself.

I proceeded to do as he told and sat up for the initial pop of the jaw.

“Okay, not too painful.”

He asked me to lie back down so he could feel exactly where the TMJ was stemming from. With that feeling around, he told me it stemmed from my right side. With both hands on both sides, he pushed his thumbs, digging into the area behind my wisdom teeth.

His strength in his fingers is something I used to appreciate as it helped dig into sore spots in my back, but today, those fingers were my enemy.

Single tears at a time streamed from my eyes as I was dealing with both unexpected pain and slight trauma from yet another doctor.

He moved his hands inside of my mouth and pushed around again. More tears came and he said, “I am so sorry. I will try to be quick.”

When he was finished and I was wiping the tears from my face, he told me the story of something a client had said to him.

“She asked me what TMJ treatment was and I said, ‘It is our second most-painful treatment.’”

My head hit many questions again.

I thought to myself, “Wait, second? That unasked for pain was SECOND?”

“My client asked me what the first most-painful treatment was then and I told her that she never wanted to have a tailbone injury because then, we have to take the tailbone out of the body and place it back again.”

Literally nothing he was saying was making me feel better about what I had just gone through; and it wasn’t over yet.

Next, he brought out what looked like a mini massage gun.

I saw it and stated, “You were supposed to be the nice doctor who doesn’t cause me pain!”

“I am trying to be the nice doctor! I still am,” he said as I still had tears running down my face from the pain of what just felt like a two-inch diameter needle just went into both sides of the inside of my back jaw.

With his little “clicker” gun, it pounded the bottom of both sides of my jaw, the top; pounded it forward, then back again.

“See, that was a quick one. Now, we will grab the needles,” he said quickly.

My stomach dropped. More needles. More pain. More fear. More trauma.

“Okay, once I put these in, you can’t talk until they are out.” He then proceeded to put four needles in my right cheek and one in my right temple.

I thought to myself, “Okay, little pinches. This is not bad compared to what I have gone through with needles already this year.”

He moved to the left side and went again. Four in the cheek and one in the temple.

He left the room, as did the nurse, and I immediately picked up my phone and texted my mom, “I have needles in my face!”

I called her after the 10 minutes were up and the needles were plucked out like you would pluck out porcupine needles, pinch and pull.

I got to my car and got my mom on the phone.

“Needles in my face, The pain is something I refuse to EVER go through again. I hate doctors. I hate needles. This year sucks.”

She said what any mom would say to comfort and manic daughter. She showed sympathy and made me feel safe again.

I stopped by my dad’s office and he took me to a brewery to “make my mouth feel better.” Despite the pain I endured, and for some reason keep enduring, I at least had a safety net in my parents to comfort me before, during and after each traumatic event.

December 2021: A scare with MS

So, after TMJ, everyone would think the year would be over, right? Wrong. About a month after release from the hospital, I was set to meet with a neuro-ophthalmologist in Columbus, one of the only two in the state — Dr. Hirsh.

I can’t say it was without warning, but when I was told he was a man of few words, I was not expecting THAT few. A little dry humor here and there helped bring some smiles to the cauldron of silence that was a visit with him.

During my first visit, I did the usual rundown of the last year with my health and gave him all of the updates with GBS, TMJ, the loss of vision, etc. One of the first things to come out of his mouth was, “Well, the eye is not a result of your GBS.”

I mean, that’s good, right? But how does he know? What was it then? The first appointment did not answer those questions, but it did prescribe me with more medicine I was originally prescribed from the hospital that in his words, was “stingy of them” to give me only a month’s worth.

I was also informed during that visit that, while in the hospital, my right eye’s vision was at 24-00. Stupidly, I asked the doctor (just to break the silence) what the number should be.

“20-20.”

Wow, I felt dumb.

After a few tests, he informed me my right eye was showing 20-50. So, MAJOR improvement. But he also did tell me his hunch of my eye condition was optic neuritis, but he wanted me to do an MRI on my veins, just to be sure.

So, I proceeded to continue the next month of my life taking this medication and fighting a month-long battle without insurance.

Funny story: You change insurance when you turn 26 as a “life event,” but in my case, no one knew how to get me insurance for an entire month. Funny now, but problematic then. Wanna guess how hard it is to get an MRI with no active insurance? Impossible.

So, the month came and went, but not without a lot of anger and frustration, which I had a bad habit of taking out on anyone in my path. When it came time to see Hirsh again, I was hopeful for a good visit; everyone was. This was a visit to say I was a-okay and good to go.

Another few tests and I was told my right eye’s vision was at 20-25. So, I was actually feeling hopeful. It was a feeling I had not had in a long while.

That quickly went away when, for some awful reason, Dr. Hirsh decided to tell me that the MRI showed no signs of issues in my brain…good, BUT that meant it was for sure optic neuritis and it COULD be related to MS…what.

After I faked joy just to get out of the room, letting him think I was fine and okay with the slim chance of getting MS, i walked out to my mother and broke down in tears.She had a bad feeling in her gut that was what the MRI was looking for, but it showed no signs of brain interruption. So why in the world would he mention MS to me?

I walked back into his office just to get clarification.

I asked, plain and simple, “Should I worry about MS? I have to worry about GBS for the rest of my life, but now do I need to add on a worry of MS?”

“Not at all,” was his response.

And let me tell you, I never wanted to yell at someone so much after that. There was no reason it needed to be brought up then!

He showed me a hand-drawn graph on his phone (like I understood that). I just nodded until I could get another word in.

“So I am good not to worry about MS?”

“You have more than a 75 percent chance of not getting MS,” he answered.

That was good enough for me to be able to walk out again and put it out of my brain for good.

January 2022: COVID comes

Remember when my doctor said that if I got COVID, my GBS would flare up to a point that no one could help me? Yeah, I remember it fondly. Those words were my blocking wall for six months, keeping me from living a life and going to events with friends and family. Those words prevented me from hiking, traveling and just going out in general. Those words kept me locked up in my house, giving me cabin fever and making me scared of the world.

Those words were my fear until COVID came to my house.

I first got the symptom of a sore throat, and I was hoping it was nothing more than a common cold. I yelled at anyone who mentioned to me that there was a chance it could be COVID. I did not want to think about the outcome of my health if it was COVID; that was until a test proved a result that was my worst nightmare. I tested positive.

At first, I was terrified to move. I did not want to stand up and my reality be that I was unable to move my legs, so I played it safe. For five days, I was in bed, feeling awful, but taking literal baby steps to move my legs every time I needed to move.

Each time I began my attempt to get out of bed and walk, I had a thought in the back of my mind that I just may not be able to. But, as I progressed through each day, I gained confidence that I was going to be able to stay away from paralysis. My GBS never came in those five days, and that was my final hope that it was done with my body…until three weeks later.

March 2022: Nearing the end

When it turned to March of 2022, I saw the light at the end of the tunnel. I knew my year with GBS was coming to its close. My excitement began to rise each day as it was another day of no flare up, no tingling and no pain.

I kept expressing to myself that I could be finished with my year from hell. I had gone months without any GBS feelings, and my vision had come back to 20/20. It was just a joy to think about.

As I drove home from work, I felt a small pain, almost a growing-pain feeling in my foot. I never thought much of it, and by the time I got home, it progressed up my legs slightly. I sat down on my couch for the evening hoping my legs just needed to rest. By the time I went to bed, my anxiety kicked in again and I texted my mother.

Five minutes later, my boyfriend and I were on the way to the hospital. My mother and myself knew that if this was a GBS flare, it needed to be caught early and treated so as to not progress to the rest of my body.

I sat in the waiting room for three hours. It was not until almost midnight that I was called back to be examined by the neurologist on call. It was anticlimactic because I was sent home after my examination and told to come back if I feel it progress to my face like last time.

I was slightly shocked at their calm demeanor, but also relieved that they did not think it was to the point of needing treatment of IVIG.

Since that small scare, my mindset has been hopeful that my health is on the rise.

In one year…

In one year, I wanted to be a smart member of society and get vaccinated, so I did.

In one year, I went paralized briefly with Guillain-Barre Syndrome for my vaccination decision. I do not regret my decision by any means. I am proud of my body for the work it has gone through for me.

In one year, I battled anxiety, stress, depression, and more.

In one year, I missed out on many things in life.

In one year, I lost my vision in one eye.

In one year, I had optic neuritis.

In one year, I gained my vision back to normal.

In one year, I fought back against GBS and won.