The Faces of Guillain Barre 2017: Day 27- Tiesha

Saturday, May 27, 2017 0 Comments

My name is Tiesha Scipio. I'm from Manhattan, KS. I'm now 25yrs old and currently 3years without GBS. Right out of highschool I went to college for swimming, but due to injuries and other series of events I left that school and actually pursued track at Fort Hays State University in 2013. Training started right in September, and everything was going great besides shin splints. The end of October/ beginning of November I noticed my feet were kind of tingley or somewhat "asleep" as we tend to call it. I always thought it was just that my body wasn't used to me running again so it was just dealing with that rather than swimming. Nothing ever hurt so I completely ignored it all. By Thanksgiving my feet and hands were just always cold and tingely but again nothing hurt and it wasn't that everything was numb , it was something I set aside and ignored since it didn't actually bother me. 

Our first indoor track meet was roughly Dec13/14 of 2013. I was beyond excited but because of how bad my shin splints were, we were actually trying to figure out if I could compete that weekend. On Tuesday Dec 10, 2013, I woke up feeling fine (again nothing hurt). I got ready for class and walking out to my car I noticed I was alittle off. It seemed like I was walking weird. At this point I had also occasionally been sleeping infront of a heater (not safe!) to try to keep my feet warm because they started to bother me but it never hurt. But my first class was on a third floor of a building, going up the stairs I noticed I was actually having to use the rail almost to pull myself up way more than usual. After class when nobody was around me I thought "ok something is was off, I feel like I can't run" so I actually tried to run, and I almost fell flat on my face. Like my balance had disappeared or something. I decided to go tell my coach that I don't think I'll be able to compete that coming weekend because something was off. As soon as I walked in my coach was watching me and he asked why I was limping.. I told him "I honestly don't know, nothing hurts at all but it's like I can't walk normal". He sent me to the athletic trainers at our school who bounced around the thoughts of pinched nerve, slipped disk (I had just pulled a muscle lifting), but then our head trainer actually said "What was that French word we just learned about?" He went to his computer and was looking something's up. 

About 15min later he came back out with a note and asked if I was sure I could drive, I told him yes and he told me I should go ahead and go to the ER. He gave me a note saying "Possible symptoms of Guillain-Barre Syndrome". So as I'm driving to the hospital, I'm on the phone with my parents letting them know everything going on (they live in Manhatten), and we're all basically looking up what the heck GBS is. The first thing the nurse at the ER does of course is ask if I've had the flu shot... which I didn't because I stopped getting them after highschool (2010) so they gave me the flu shot. I truly believe something sped up the deterioration of the sheath & learning everything doctors think it was the flu shot because of how slow it was first moving to everything that changed after.

After being admitted, it then took 3 days for me to not be able to walk or move my arms at all. I stayed at Hays Med from the 10th-12th. From which they only let me leave with my mom because I already had a dr appt at home for my shin splints; now it would just be for something else. That day we realized how bad it was from my mom trying to help me walk, and us both falling when I tried to step up onto a curb, to my dad having to carry me from the car into the house to the couch. December, 13th I think went to Irwin Army Hospital for my dr appt, but things had already showed getting much worse and I honestly don't remember much of that day. I know I started at Fort Riley, but took an ambulance to Stormont Vail Hospital in Topeka straight to the ICU. 

I ended up only being in the ICU for a week but it was definitely the worst part. I developed Bells-Palsey right away affecting half of my face and my speech. I cried when they put the feeding tube in. I learned I can absolutely NOT pee in a bed pan haha the nurse agreed to help me get on the camode & the moment I did I could pee haha. I also scared my bestfriend and her mom the day they came to visit me because we didn't realize I had started aspirating with water so I was choking but wasn't strong enough to cough to clear it. My little brother wouldn't speak to me because then he'd have to acknowledge it's real. My little sister wouldn't leave my side but shut down socially and in school. I had horrible hypersensitivity but being an athlete literally all my life my muscles started cramping so bad, my parents spent the nights rubbing out my legs lower back just so I could attempt to sleep some. I ended up being paralyzed and somewhat unresponsive for two days except for my lungs. My back had just really started becoming numb so they were pretty sure lungs were next. My first treatment was the plasmapharesis for the few days, which ended up halting the progression enough I could leave ICU and go to the acute section of the hospital under close watch.  
My family decorated my room for Christmas (they took an extra IV pole from the hallway and put ornaments on it lol). Two of my bestfriends visited me on Christmas Day even which thankfully was a "good day". The 27th was the day we learned that my stomach or bowels or something wasn't cooperating with the food from the feeding tube. I actually ended up throwing all of it back up (it truly tastes horrible!!) and they had to take out my feeding tube (the nose one) on the 28th. I then had to decide if I was going to the one through my nose again or if I wanted the G tube (stomach one). After discussing everything with my parents I decided on the G tube. I ended up using it ONE DAY.... and then I passed my swallow test and could eat food 🙄🙄 . But of course you have to leave it in for 6weeks to heal now so I was stuck with it , not even needing it. We celebrated New Years watching the ball drop and decorating my room with glow sticks lol. Jan3rd 2014 , I was released from Stormont Vail and could either have my dad drive me or take an ambulance to Nebraska for rehab. I chose my dad right away... anything to be out of the hospital scene for a bit. 

This shower my progress: Sept'13 during track, Apr'14 the day I got out, Feb'15, and Feb'17.

Madonna Rehabilitation Hospital in Lincoln, NE then became my home for the next 3months. I had already started light physical therapy back at Stormont and showed some progress so I was anxious to get started. My first day there I actually took 3 steps with help and a walker but that was 3 steps I hadn't taken in so long. I pushed myself so hard for 3 or 4 days, inside and outside physical and occupational therapy. Within a week I was noticing weakness in places I was originally starting to make progress.. not long after that I was taken back to a hospital in Lincoln because I was starting to relapse. I had pushed myself way too hard and my body wasn't ready for that yet. I had another series of plasmapharesis and they kept working with me some for PT and OT. My mom took my outside a lot because it helped my mindset and I just love being outdoors. After about a week I was able to go back to Madonna to start again. This time we made sure to take our time. There were 4 other men at Madonna that also had GBS, much older than me. Me and the youngest guy of them all were the only ones that were able to be in wheelchairs compared to the motorized ones. 
While I clicked with all the men with GBS on the level of understanding I was still much younger than them all ( I was 21, they were my dad and grandpas age). There were two other patients at Madonna who were too old for pediatrics but the younger of the halls; us three soon became inseparable (as much as we could be). Without Tabitha and David, I most likely would've stayed a lot quieter in my room a lot. There was also another patient I met, a father of three gorgeous little girls I got to meet, who became such an impact on pushing me. Being an athlete, somewhat "competing" makes me push myself. Alex and I always somehow made jokes about our situations. He was also able to use his arms while I struggled but I was progressing with my legs quicker sobwe kept pushing eachother through it all. Those three patients are a huge reason Madonna didn't seem so "bad" to me. 

I'm pretty sure I annoyed the heck out of my PT Matt though, he had to deal with every attitude I had whether it was good or bad each day. I was making pretty good progress, but one of my favorite days was when I got to the G tube out. I still to this day do not know what it looked like but I was on FaceTime with two friends; they watched the nurse pull it out and about threw up lol. Taking out the G tube meant I could finally start aquatic therapy, which being a swimmer I was beyond excited for. Water therapy I think is one of the things that truly helped me the most personally physically mentally and emotionally. Being able to stand and walk, and I loved the water personally all helped so much. At some point I hit kind of a plateau so I went ahead and had a few treatments of IVIG, and from then on everything seemed to keep moving well. I started practicing a walking with my braces and a cane. PT and OT got alittle more intense and I was able to push myself more. I even talked my AT into letting me try to swim freestyle which I did with no hesitation like nothing was ever wrong. (I was able to swim 100% again before I could walk.. I'm a fish). 

By my birthday (March 27th) I was doing most of my PT with a cane wth braces and sometimes working on walking without braces. My goal was originally be out by my bday, but when that didn't happen I think it was my PT who told me about a 5k hosted in Lincoln every year called RunningDownGBS. The money raised went to a patient with GBS to help with medical bills. That was my new goal. 

 Progress picture of my birthdays.. my 22nd spent in Madonna & my 25th bday from this year.

April 5,2014 was one of the happiest days of my life and my family's too. Not only did I walk out of Madonna only with my braces, but my family took me straight to the 5k where we met up with the rest of my family. Being the athlete I am and being able to push myself alittle harder , I was determined to finish the 5k. No I was not able to run at all that year obviously but I did not use the wheelchair once during the race. I walked with my little brother, who at one point gave me a piggyback ride for alittle because I did not have much endurance & my little sister who pushed the wheelchair just incase. Finishing the 5k that day made me more determined that I could get back to things I loved and get my life back.

right after we all completed the 5K the day I was released from Madonna.

After living at home for a few months, I was determined to move back to Hays. I moved back in July and tried to put my life back together. I started learning more what I could and couldn't quite do yet. And fell in love with working out all over again. I had intended to pushing for track but soon that became something I didn't want to do. Now.. on May 13th I'll finally be graduating for FHSU with my first bachelors & will be walking across the stage with no hesitation or problem. I do still have some nerve damage in my feet but at this point I'm so used to it it's never bothered me much. It's all been a long time coming but I'm thankful and blessed that I'm at this point.

This is one of my favorite since I'm finally wearing the exact leggings I wore during GBS... Feb'14 to Apr'17