My Weekly Challenge**edited 3/2/17

My experience with Guillain-Barre Syndrome/Chronic Inflammatory Demyelinating Polyneuropathy has completely transformed the way I look at life. The stupid things that used to matter no longer do (in a good way, of course). My sense of appreciation for the minute details of life is amplified. Getting out of your comfort zone can be something as simple as wearing an outfit in a bold color you'd never thought you'd wear. It's little risks here and there that will gradually build confidence and ensure happiness. I don't lack either in my life, but I can always improve as a person. I pledge to do something out of my comfort zone, something I find challenging, or something I haven't tried tackling yet to explore my capabilities and limitations. This will also help me maintain being active since I can't go back to work yet! I am so excited to do this and I hope I inspire others to do the same to see if it makes their life a bit brighter.

If you know me, you know I am an avid baker. It's like my form of meditation and a way for me to relax. I've always wanted to try my hand at baking bread, but never had the confidence to try because it seemed too daunting of a task. Well, I have been searching for recipes and decided that this week, I will bake bread! I started my sourdough starter, which takes about 5 days to allow wild yeast in the flour to mature. Starters are amazing because you can store what you don't use and refrigerate it and feed it weekly. Some people are lucky enough to get passed down starters from the generations before them! I bet those bread are amazing! I personally know a pastry chef who has a vat of his own in his refrigerator. He's had it for years and when he opens the container up, the aroma is intoxicating. He makes the most amazing malasadas and ensaymadas with it. It's never too late to start, so here I go!

Day 1: 2 oz. all-purpose flour + 2 oz. filtered water thoroughly mixed together. I saran wrapped the bowl, making sure it wasn't on too tight and left it in my room.

Day 2: I woke up and found bubbles forming already! Added 2 oz. all-purpose flour + 2 oz. filtered water and thoroughly mixed it.

Day 3: More bubbles and you can start smelling a little of the sourness!

Added 2 oz. all-purpose flour...

...and 2 oz. filtered water and thoroughly mixed.

What it looks like after mixing. I loosely wrapped it with the saran wrap and put it back into my room.

Day 4: Even more bubbles and the sour notes of the starter are even more prominent. You can see that the wild yeast has been really activated and the mixture is now a lot looser than before.

I added only 1 oz. all-purpose flour + 1 oz. filtered water this time because I'm afraid of making too much. There's not a lot of room in the refrigerator right now.

Day 5: If done correctly, the starter should double in size on this day. Seems like a success to me! It should be very bubbly and frothy looking. I stirred it and the consistency is reminiscent of a loose batter. The sour and funky smell is quite prominent. All of this indicates that the starter is ready to be used! Emma, from The Kitchn, says it should taste sour and vinegary.

To start making sourdough bread, you have to start the leaven the night before you plan to make the dough. That requires adding the active starter to more all-purpose flour or bread flour and filtered water.

Baking begins tomorrow, wish me luck! I will update this once I finish! Stay tuned...

*Update: March 2, 2017*

I originally published this on 2/25/2017 expecting the leaven to be ready the following day, but unfortunately, that wasn't the case. The wild yeast was slow to start, probably due to it being a bit colder lately. I had already failed! I discarded the leaven because it didn't pass the float test and realized the starter and leaven are essentially the same since it maintains a 1:1 ratio of flour to water. It is possible to make a starter ready to be used in 5 days, but it seems after a bit of internet searching, a more realistic timeframe is well over 5 days, even 10 days; sometimes it can take a month! Ultimately, I think it's worth it because the complexity of flavors is simply not something you can replicate with active dry yeast. The wild yeast is unique to your exact location, what you feed it, and how you maintain it!

I ended up having to do some troubleshooting and discarded most of my starter, fed it equal parts flour + filtered water in ounces and left it to grow in the oven this time, where the temperature would be a bit warmer and more steady (I added in a little bit of whole wheat flour to mix it up). I continued with the addition of equal parts flour + filtered water for a few more days. It's important to do it at the same time each day to be consistent. Lo and behold, my starter contained big pockets of bubbles on March 1! It was a stark contrast from the loose pancake-like batter with tiny bubbles in it. I followed the sourdough recipe from The Kitchn linked above in the Day 5 description. Baking bread is no walk in the park. It requires a lot of labor, love, and time. In any case, here is the outcome! I don't think I did too bad for my first time!

Bryan's Story

Today, I wanted to share Bryan's story because it really resonated with me. He was kind enough to share his story on the GBS/CIDP Forum to serve as motivation and hope for those going through the same ordeal. I did do some editing, but it takes nothing away from his story and only serves to enhance and further educate.

My name is Bryan and I am 51 years old. So when did it all start? I can’t put a date on it, exactly. In June/July 2016, I started to get winded doing my job and thought it was just my asthma acting up. The doctor prescribed me some medication and sent me home. I also experienced random pains; a finger on my right hand and another on my left felt like a tendon had been pulled. Also, a big toe would hurt and then the other one would, but I thought it was just my shoes. I started to feel even more fatigued in late July. By mid August, I had very, very mild numbness start in both hands. With a bad back, my chiropractor just attributed it to a pinched nerve. A couple weeks later, my feet started to hurt and become numb. At that point, the chiropractor to me to go see a doctor because something “bigger” was wrong. In early September, blood tests showed a cratered B12 level; symptoms of B12 deficiency include possible numbness in both hands and feet. The plan was to build the B12 back up and return to the doctor's in a month for a follow up. In mid-October, my B12 levels normalized, but the numbness was getting progressively worse. There was no real motor control deficits as of yet. Symptoms started getting even worse the following month. By the end of work, my feet would hurt so bad that it became difficult to walk to the car. I subsequently went back to my general practitioner who referred me to a neurologist. I got in right before Thanksgiving. Blood tests showed nothing out of the ordinary. A week later, I had a spinal tap which indicated abnormally high levels of protein. I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and started on 60 mg of Prednisone. Prednisone is a corticosteroid that is oftentimes effective as an immunosuppressant drug. One of the major indicators of CIDP vs. GBS is the body's response to corticosteroids; CIDP patients typically see positive results, whereas GBS patients report no changes. During December, symptoms got worse and Prednisone seemed to be ineffective. I went back to see the neurologist on January 2 and collapsed in his examination room as my legs gave out. Luckily, the hospital is only 50 yards away. Symptoms, at this point, included loss of motor control in my feet (my right ankle buckled with any weight applied), the ability to taste, and the feeling in my torso, arms, hands, feet, and legs. I lost my libido as well and experienced shortness of breath along with extreme fatigue. I could barely walk, collapsed several times, and couldn’t pull myself up when I fell. On January 3, I started the 5-day regimen of IVIG where response was immediate and within days, I was able to work again, but not without extreme effort. The IVIG definitely jump-started my recovery. I also remained on Prednisone, but a tapered dose of 40 mg a day. I had to use a cane during the first two weeks of my recovery. I couldn’t walk down steps. My feet still felt semi-paralyzed and my hand felt numb and on fire at the same time. After that, I started to get better, incrementally, day by day. The numbness in my hands and feet started to recede towards the toes and fingertips every day. My taste returned, the shortness of breath has gotten better, and feeling has returned to my torso. I will be returning back to work Valentine's Day week. As of today, the paralyzed/pain feeling in my feet has receded to the toe line. It still affects my gait and balance, but I don’t need a cane anymore. Walking down steps is still a challenge, but walking up them is 90% back to normal. The same goes for my hands. The pain has been pushed to the finger tips. I assume it is my nerves recovering from the trauma. Also, my right ankle, which turned numerous times during early January, has finally healed and has helped my balance and gait immensely during the last week.

I have a couple thoughts on physical therapy I'd like to address. My therapists are great people, but I think we pushed too hard for a couple of weeks and overtaxed my muscles in my legs, which made me feel as if I was going backwards. They recognized this and we cut back on repetitions. Once we did that, I started to feel instantly better. I also try to walk a quarter mile a day. My advice is to exercise in moderation. Overtaxing muscles, for me, made me feel as if the CIDP symptoms were getting worse. *As an aside to Bryan's story, this is one of the first things physical therapists are taught when they are learning about GBS and its variants! It is always a bit troubling to hear stories like this because it could've had dire consequences as over-fatiguing muscles whilst recovering plays a major role in recovery time. It can cause a huge set-back. Thankfully, that wasn't the case with Bryan and they adjusted quickly.*

Prednisone is a double-edge sword. I think once the IVIG kicked in, it allowed the corticosteroids to keep the immune system in check. Of course, long term use has its side effects. I feel like I took 30 caffeine pills all at once! I’ve gained weight, especially in the stomach and my face has turned round and, well, fat! It also causes sleep issues, but that has gotten somewhat better with time.

Now that I am recovering, Gabapentin seems to finally offer some level of relief for the nerve pain. Before, it seemed useless. *My personal neurologist recommended Gabapentin or Neurontin (one of its brand names) over other anti-convulsant drugs such as Lyrica because people reported less side effects with Gabapentin. I was on a high dose of Neurontin in the beginning with little relief so we decided to go with Lyrica. Not only was it not effective either, it also caused double vision, so I ended up switching back to an even higher dose of Neurontin, which helped a little.* I would love for the remaining neuropathy to heal, but I’m happy right now that I’ve recovered this far. Hopefully this offers some hope or insight for others. Best wishes to all my fellow CIDP sufferers.

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Payton's Story

By definition, Guillain-Barre Syndrome is considered an acute inflammatory disease of the peripheral nerves. According to John's Hopkin's Medicine, a chronic form of this illness may present with progressive symptoms and result in Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). A key difference is that CIDP is a slowly progressive ailment that usually responds favorably to corticosteroids. I was finally diagnosed with CIDP in mid-November 2016 after my consultation with a different neurologist who happened to be working with the subacute facility at the time. My history of relapses and plateaus after IVIG treatments was a cause for concern for this particular neurologist (he's the 5th or 6th neurologist I've seen throughout my entire care) and against the advice of a world-renowned neurologist who specializes in GBS/CIDP, he put me on a high dose of corticosteroids, which jump-started my journey towards walking again. This just goes to show everyone how diverse this particular disorder is and that one size does not fit all for treatments, even in cases that may be similar. Today, I take a break from blogging about my journey in order to highlight a special young lady who reached out to me in hopes of inspiring and motivating others. She is resilient, determined, in high spirits, and could use some positive vibes and prayers sent her way! Remember, the journey may be long, but each little victory adds up. Just being alive is enough to be thankful for regardless of the pain and residual symptoms we may experience. In my humble opinion, it's a small price to pay to remind me to be grateful for each day.

Hi, my name is Payton. I am 14 years old and have CIDP. When the symptoms started, I was just 6 years old. I was given the Flu Mist, along with my mom, brother, two friends and their mom. Two weeks after, I began having the symptoms of GBS. My hands and feet were tingling, and I began falling very, very often. My mom brought me to the on-base doctor, as we are a military family. The doctor blew my mom and me off, saying I was faking it because my dad was deployed. My mom begged for more testing, but the doctor said, and I quote, "I've been doing this longer than she's been alive. She's fine.", which my mom began to believe. A few weeks after, my vocal cords were paralyzed, I had no motor function, and I had lost almost 40 pounds. My mom began hearing about GBS from my grandmother, my dad, and the show House (ironic almost). She took me back to the doctor, demanded testing, and then she sent us to Augusta, Georgia, to the children's hospital there.

They did a bunch of testing and finally revealed that the Flu Mist was not helping my immune system, but attacking it. I was diagnosed with GBS, and was set on a course of medications. When it didn't go away, I was diagnosed with CIDP. I was put on a course of IVIG treatments for 2 1/2 years, and when they said I was better, we stopped. I still have constant pain in my legs and hands and awful motor function. I am able to walk, just not very well. We thought that was the end. But now, many years later, I am relapsing.

We are now living this all over again: more IVIG treatments, more specialists, and more tests. Prayers are welcomed and encouraged. Thank you.

"What a trooper" is right! What a brave, brave girl to have to endure something this awful at such a young age. It is even more devastating to hear that she is currently relapsing. I just want to clear up the fact that though it was found the Flu Mist was not helping her immune system, it is a very rare occurrence of 1 in a million. In 1967, there was a small uptick of 1 additional case of GBS per 100,000 people who got the swine flu vaccine. It is unclear whether there is a link between the Flu Shot/Flu Mist and GBS/CIDP for other years. The reason why it is still asked on paperwork today is probably because the forms being used haven't been updated since out of sheer laziness. According to the CDC, in the United States, an estimated 3,000 - 6,000 people develop GBS each year on average whether they received a vaccination. Studies suggest that it is more likely that a person will get GBS after getting the flu than after vaccination. Severe illness and death are often associated with influenza, so make an educated decision when it comes to deciding whether or not to get vaccinated. Hearing Payton's beginning story is infuriating because of how dismissive the first doctor was. From the many stories I've read of other people's personal account, a lot of doctors seem to be when it comes to GBS/CIDP in particular. This is why I am so passionate about opening a business advocating for those who need it, not limited to suspected GBS/CIDP patients. More on that in a later post! I can tell that this girl is a fighter and she will pull through. GBS = Get Better Slowly. You can and you will bounce back from CIDP. Thank YOU, Payton, for sharing your story with me and allowing me to share it with others. Sending positive vibes and prayers your way! You got this!

Kindred Hospital and So On Part 2

One of the most interesting things about GBS to me is that your cognitive function is not affected. You're completely aware, just locked in your own body unable to do anything for yourself. It's such a strange feeling. "If you don't use it, you'll lose it" never rang truer to me than after having gone through this.

I forget at what point in time it happened, but I recall having to cut my hair and I had a hard time dealing with that. I love my long hair and who isn't a little vain? I find it a bit amusing now, looking back, that I had more anxiety about cutting my hair than the actual progression of Guillain-Barre Syndrome! I think it was while I was still at UC Irvine Medical that my friend, Hieu, just couldn't seem to brush the knots out of my hair no matter how hard he tried. The nurse ended up cutting out whatever mess she could and my friend, Spencer, had his hair stylist mom come in to even out my hair. My friends are basically family and their families also treat me as such; she came in a few other times to give my hair a good wash and even brought in purple shampoo for me since I had blonde hair and it helps keep the brassiness from occurring.

Speaking of hygiene, at Kindred Hospital, you're limited to one of those shower caps or a quick wash if time permits the CNAs or LVNs to do so for your hair. Luckily for me, my mom and one of my sisters would wash my hair for me every 2-3 days. We had a good system going where they pulled me upwards so my head hung off the bed to get a good wash in. One of them would then blow dry my hair afterwards because I hate wet hair. My hair was always up in a ponytail or bun so that it'd be out of the way. Since my mom took the morning shift to care for me, she helped wash my face every day when I woke up before putting my glasses on so I can see. Oral hygiene was up to the Respiratory Therapists every night and consisted of light brushing with a sponge tool attached to the suctioning tubing and dipped in what was essentially mouthwash to help keep my mouth healthy. This was very important because I had braces at the time and they kept cutting the inside of my mouth even though I had no real use of it. My Orthodontist was kind enough to come visit a couple of times to see how I was doing and when he finally received the okay from the facility, he removed my braces at the hospital so I had one less thing to worry about. I received a bed bath every other day. Sometimes I would get very lucky and get a CNA or LVN that had enough time to give me a really good washing with real body wash and a lot of water. It's amazing how dedicated and passionate some of them are when it comes to their jobs. Some of them would bring in brand named body washes, deodorant sprays, lotions, etc. as an option for patients and it came out of their own pockets. It warms my heart to see how much they care, down to the very minute details. Rey was one of my favorite LVNs because he was one of the few that spent the time to really shower his patients. Everyone is bed-ridden at that facility so it takes a bit of time to wash someone who is stuck in bed much less completely paralyzed on top of that. Those who work with him have nothing but positive things to say about him, which speaks volumes about his character. (If you're reading this Rey, I haven't forgotten that I owe you a banana creme pie! I will make it for you, I promise!) In the grand scheme of things, it seems like no big deal, but him spending that little bit of extra time made me extremely happy, which made all the difference in the world in terms of recovering. It gave me motivation to keep working hard and kept me happy. My dad took over caring for me in the evening, so he'd wipe my face with a face wipe and remove my glasses for me before bedtime. Never in a million years did I ever think I would be so completely dependent upon others in such a way.

A quick shout out to all the CNAs that I have bonded with during my stay at Kindred. Some of them are extremely compassionate, loving people. One particular CNA that stood out was Mia (there are others that I absolutely love, but I just can't recall their names at the moment). She just had such a positive aura and no matter how many times I had to call her on my worst days, she showed up with a positive attitude whether it was to change me or adjust me. She took the time to pat my back when I was on my side because it was good for the lungs. She never made me feel ashamed of my bodily functions or gave me crap for wanting to be turned before the 2 hours and always showed up as quickly as she could. Words cannot express how grateful I am and how amazing of a person she is. I can't wait to go out with her soon and show her that I am walking now because I visited in mid-December and was still in a wheelchair.

Once I started regaining feeling and movement in my shoulders in early April, my awesome Speech Therapist, Tim, felt like I was okay to start trying out the speaking valve again for short periods of time. I'd see him a few times a week and in addition to voice exercises, we would work on tongue exercises, practicing swallowing, etc. since my muscles were weakened from lack of usage due to paralysis. He taught me to over-exaggerate my enunciation and pronunciation of things in order for people to understand what I was saying regardless of having a speaking valve attached. It made communication a lot easier, especially for those who could read lips! The speaking valve couldn't stay on for too long because it dries out the airways and causes blood clots to form, which has to be deep suctioned out. Having to focus on breathing and having the speaking valve on was quite a challenge. Once the speaking valve is attached, the ventilator doesn't register things as accurately so it can be dangerous if one isn't truly stable. I had to remember to take deep breaths to keep my oxygen saturation at a normal level and to keep my lungs properly inflated when I was weaning and had the speaking valve attached. It's really hard work having to think about breathing and making myself do so when all my life, it was something automatic. It was extremely tiring trying to repeat certain letters and words starting with those letters Tim wanted me to pronounce during our sessions. My lungs were weak and it took a lot of energy to try and speak. Sometimes my voice came out very soft, so it was hard for people to hear what I was trying to say. As time went on, my lungs and vocal chords got stronger, so I was able to speak more clearly and speak for a longer period of time. It was so weird to hear my own voice again after not being able to speak for a month or so! It sounded different to me even though family and friends said it sounded like my normal speaking voice. The day finally came in May where I was confident enough to perform the swallowing test with different textured foods like a soft cookie, pudding, water, etc. They recorded me during the test to see where the food was going and determined I was ready to eat soft foods on the ventilator. The speaking valve was essential in order to eat for swallowing purposes. I had really high hopes for my first real meal, but was extremely disappointed when that day came because my taste buds weren't the same and it was exhausting having to chew and swallow food. Who knew it was so much work to sit up and eat something as easy as mashed potatoes?! I think I cried because I was so disappointed since I generally love food and was so looking forward to eating again. My taste buds did eventually wake up and eating got easier and less tiring. I am truly thankful for having the pleasure of working with Tim. I know it was a great change in pace for him because my outlook was positive and I was probably his youngest patient. He always showed up with a positive attitude and it really helped push me to wean off the ventilator faster. He had great expectations and motivated me to make a full recovery. Thank you for all you do and all that you will continue to do for people. You are amazing and now you're going to have to teach me how to surf!

I had some pretty amazing Respiratory Therapists, most notably Kalvin, Paul, Tony, and Victor. Kalvin and Paul were morning shift therapists who pushed to wean me off the ventilator as quickly but safely as possible. They encouraged me to not rely on the ventilator more so than others, who as soon as I said I was tired, would just let me off the hook and put me back on full support mode. Tony and Victor were night shift therapists who were patient and kind. I would have to get deep suctioned many times during their shifts because I would go longer and longer with the speaking valve on since I could tolerate it, which really dried up my airways. The blood clots that inevitably formed caused a heaviness in my chest and difficulty breathing, but a few deep suctionings throughout the night resolved all that. Just writing about this astounds me. What some people such as myself have to go through to recover is just unbelievable at times. I recall having a difficult time weaning, especially at night because I didn't want to not be on full support while sleeping. I wasn't comfortable with not being in control, which probably contributed to my insomnia. I was constantly anxious about my breathing when asleep, so I was prescribed Xanax to help me relax in addition to the TWO sleeping pills I was on (Ambien and Restoril). The machine would go off like crazy during the night unbeknownst to me due to my sporadic breathing while not on full support. My dad had many months of sleepless nights in that hospital. I felt so bad for him because he rested on a makeshift bed of three chairs put together. I constantly worried about family and friends and felt bad for them and didn't like 'bothering' them with my needs, but I also knew I shouldn't feel guilty because my condition was out of my control. For many months, I would knock out after 15 minutes of my sleeping pills being administered around 11 PM and I would wake up at 12 PM. I never remembered anything that happened between those times, but I've heard accounts of me asking for things and waking up in the middle of the night. I also didn't dream; it was all just a blank. I don't remember the name of the Respiratory Therapist who suggested a slower method of weaning me off the ventilator to the doctor because he didn't work with me often, but what he suggested worked for me. They basically started acclimating me to a new setting that was a little lower than full support and having that become my new baseline to sleep through, before lowering the settings again every few days and so forth. By early May, I was on T-bar and off the ventilator. Paul tried removing my trach on May 10th, but it wasn't giving because a little bit of skin had healed over it making it difficult to remove without hurting me. He consulted with my Pulmonologist, who came in and sprayed my neck with a little bit of numbing spray and yanked it right out with no problems. Of course he had my permission and I was fully aware of what he was doing. It was a bit bloody and he had left the trach on my bed right next to me without notifying the RT about what he did. The look on Paul's face when he walked in on the aftermath was priceless. He went white in the face and was so surprised by it all that he freaked out a little and had to walk out to compose himself before calmly returning. I was completely stable, though I had a gaping hole in my neck that was a little sore. He promptly helped tape it up and it closed up and healed very well over the next few days. I did have some complications with breathing after still and had to be on bronchodilators to open up the airways to make breathing easier. In addition to that, the Pulmonologist ordered a CPT machine with vest for me. This high frequency chest wall oscillation machine's vibrations help break down and separate mucus from airway walls and move it up into the large airways to be coughed up. It would shake me for a good 20 minutes. Some days, I would also require oxygen.

I thought regaining feeling would be the best thing ever, but it felt worse than losing it in the first place. That internal burning feeling they talked about? Yup. Had that. To top that off, once the nerves started waking up, I had a never ending sensation of pins and needles, except it was magnified. It was extremely uncomfortable and I wished that I could just crawl out of my own body until that subsided. I also started experiencing nerve pain, which was supposed to be relieved by Gabapentin, but it didn't help. The doctor switched me over to Lyrica to see if the results would be better, but it was the same and I even started experiencing double vision, so I was switched back to a higher dose of Gabapentin. The constant jolts and zaps that traversed within my body caused me to twitch. Norco became a constant staple every 4 hours when I couldn't stand the pain any longer. It got so bad that I was asking for more pain medication before it was even time to take it. It wasn't that I was addicted to it as a lot of people experience with such narcotics, but I was in a lot of pain. Since I could feel again, I also started to feel itchy. People would constantly have to scratch my itches for me. Stretching became extremely painful and my range of motion became limited. Sometimes I secretly wished that I had died instead because regaining sensation was THAT awful for me. I was never comfortable.

My Occupational Therapist, Cielo, was extremely sweet and always pushed me to work my hardest and to try to connect my mind and nerves to the activity being done. She concentrated on my arms and hands and tried to figure out what devices could make me a little more independent. My Physical Therapists, Pam, Michael, and Erika were an absolute pleasure to work with as well. They pushed me too and were always very encouraging. Towards the end of my stay at the facility, we were switching between passive range of motion days with my legs and head exercises and days where I was strapped to a tilting table to practice weight bearing on my feet. My blood pressure had to be monitored closely when the tilt table was in use because it would shoot up really high. Sometimes I would also experience nausea and dizziness due to being in an upright position, which I hadn't experienced being in for a few months. Some time at the end of April, I was fitted for a powered wheel-chair that could be controlled using my head. They sent a sample one to the facility for me to use for a short time to test it out and that was the first time I left my room to go outside. My perception was out of whack from being cooped up in a room all day every day. I couldn't see far down the hall. It was really blurry for me even though I had my glasses on. It took some time for my eyes to adjust to seeing further distances without that effect. I would look out the window a lot more because I was able to move my neck and lift it a little. I would watch the cars drive by and families enjoying picnics and spending time with their loved ones out on the huge lawn right in front of my window. It made me so happy to be able to go outside after many months of being indoors. The warmth of the sun on my skin, the cool breeze of the wind, the vivid colors of cars and mother nature, and the sounds of the trees rustling and birds chirping made me so happy. It was like I was a child again experiencing all these sights and sounds for the first time. My sense of appreciation for life was amplified that day. I was also regaining movement of my fingers a little at the end of April, which had me even more excited. I wasn't able to go out that many more times because they had to take the wheelchair away since it was just a sample. There was an issue with the company they were working with the get me the powered wheelchair and it ended up never working out.

I constantly prayed. I prayed a lot, especially at my weakest moments. I grew up Buddhist, but didn't really practice it all that much and fell out of touch completely once I reached my teenage years. It wasn't something that was pushed upon us or encouraged. I consider myself to be spiritual and believe in a higher being. Even before being hospitalized, I'd pray often, but it was always for others. Religion is a hard concept for me to understand due to all the negativity surrounding it and the intolerant and hateful people I've encountered in life who use religion when it suits and benefits them and their families. I've also tried to stay open-minded and have been to churches before. It just isn't for me. I've had some pretty stressful moments having to deal with family and insurance and prayed for some kind of help to no avail. I prayed for the best outcomes to happen and the opposite would happen. You can sit here and argue with me about God testing me and that I can handle these things that are thrown at me, but I don't buy it, sorry. Prayers are welcomed and I will continue to pray, but religion isn't something that I feel like I will ever whole-heartedly be invested in. I am extremely thankful that I was diagnosed with GBS and not something that is irreversible and gets progressively worse. I just feel like when people start thanking God for everything, they're discounting the fact that I worked my ass off to get to where I am today and that my sheer will and determination comes from within ME. I found the strength within me to fight. I remained resilient and positive throughout this whole journey because that is my nature. You can believe what you want, just don't try to push your agenda on me. I'm generally really polite about it, but it really weirds me out to be honest, so thank you, but no thank you.

Although Kindred itself is an outdated place and can be improved upon, the majority of people I encountered were simply amazing. A lot of times, it would take way too long for someone to answer the call light. There were several occasions where I would have to sit in my own waste for an hour or longer before getting changed. I am extremely susceptible to UTIs, which I had to be treated for several times throughout my stay due to the length in time before getting changed and just from being catheterized on and off due to retention. Infections of any kind are to be avoided as much as possible because it could stall recovery or even cause regression. I can never understand how any facility can justify the ratio of Nurses and CNAs to patients. How can they give the best care possible when they have way too many patients to attend to? This greedy aspect of the health field industry and the cost of treatments is a bit discouraging to say the least. Not to mention the unwillingness of some LVNs and RNs to help change patients when CNAs are all busy. I don't get why some of them think they're above that when it's a part of their job as Nurses. Because you get paid more and have a better sounding job title or a little more education you're all of a sudden above changing patients and answering call lights? In any case, my case manager was an amazing woman named Robin who advocated for me and pushed to get me into the best subacute facility possible to no avail. She tried her hardest, but it was really difficult due to the timing of it all. It was during survey time for all the facilities so they were gearing up for that and no one wanted a patient my age without a detailed care plan in place or else they would get dinged pretty hard for that. My Pulmonologist, Dr. Kohli, is one of the best doctors I have ever encountered. He always pushed for the best treatments, was very responsive and easy to get a hold of, compassionate, knows how to talk to patients, and he really listens! I would talk to him about things here and there when he came in and a month later he would bring the subject up again showing he really does listen instead of just pretending to and nodding his head. He even followed me to the subacute facility even though I was his only patient there so he had to drive there every other week to check up on me.

Infamous Kindred Hospital and So On Part 1

I was moved to Kindred Hospital in mid-March. As mentioned in the post before this one, Kindred Hospitals in general do not have a good reputation. Their facilities are a little outdated and resources somewhat limited. The first nurse I had encountered reaffirmed my preconceived fears because she was so rude and abrasive. She never told me what she was doing to me. I felt violated and of course she was reported so I got a new nurse and never had to deal with her again. I feel like sometimes when these nurses work for so long, they often forget that they're dealing with human beings and need to be more aware and compassionate. One of the first things you're taught in any medical field is to talk things through with the patient regardless of whether they are alert or not. There's something comforting about being talked through procedures when you're in a strange environment and unwell. Amazingly, people who pull out of comas can oftentimes recall conversations they've overheard or recognize the voices of those who cared for them and talked them through whatever was being done to them. Why is such a simple concept so easily forgotten?

I remember while on the ICU floor, the staff at Kindred spoke to me about a patient they had worked with years ago who came to them with the same disorder, except he was in a coma. He slowly recovered from GBS and became completely functional again. They reassured me that I would fully recover as well because I'm young and healthy. They told me to watch for symptoms that signified initial onset of recovery such as a burning feeling throughout the body and the sensation of pins and needles. Regardless of the prognosis of medical experts and their projected timeline for me, I was stubborn and wanted to believe otherwise. I repeated to myself that what had happened to me wasn't on the worst end of the GBS spectrum. I was going to recover a lot faster than a year. I'd be out before August. We all know how that went. Unfortunately, you can't quite put a timeline on GBS as it affects everyone so diversely. The consensus was that I would be at least 75% recovered by 1 year. Thankfully, I feel like I have surpassed that at 10 months.

I hated that they kept having me change rooms when I stayed at Kindred. It was such a nuisance because they have to transfer me with the bulky ventilator, bed, and bags upon bags of my belongings. It was an exhausting, aggravating, and nerve-racking experience each time. I was already sick and to constantly experience change wasn't something I appreciated. It was especially hard to accept the fact that the hospital was now home. The last room I stayed in had a nice view of the outdoors, but I only started to look out once my neck movement was regained. We had to open and close the blinds each day so I had a sense of time. I didn't see the outside of my room for at least a month or so. One of the most annoying things to me about GBS was the fact that I had developed sensitivity to noise. I don't know why it's a thing for people to come in and talk to me very loudly as if I'm deaf. I think the staff is probably used to dealing with older patients or something. It was just a funny quirk I noticed about a lot of people who came in. We had signs everywhere to remind people to keep their voices down, though few actually read it. We had bright YELLOW signs, white signs, wrote it all over the white boards...to no avail. I'd have to give a signal to my caregivers to remind the staff to lower their voices. Helloooo, I'm on a ventilator and can't talk, but I'm completely alert and my cognitive functions are completely intact. How does that translate to being deaf? Thankfully, that sensitivity went away with time. Another annoying thing about GBS is the amount of weight loss you experience from being bed-bound and only getting nutrients through a G-tube. I usually wear contacts, but had to use my glasses in the hospital and they kept slipping down from the weight loss, so people kept having to push them up for me so I could see. I was about 107 when I first checked into the hospital and at my lowest, as mentioned in my previous post, I was a mere 90 lbs. at 5'4". I looked like a twig and I've struggled with body image issues since high school where I felt immense pressure to constantly maintain a certain weight and look to make myself happy. A part of me kind of liked it, but a bigger part of me knew that wasn't right or healthy. I'm still working on my struggles because it isn't out of the norm for me to only eat one meal a day. It's not that I starve myself, I'm just never really hungry. Sometimes people don't realize that it's just as damaging to make comments to a naturally thin person. You know the notorious Freshman Fifteen once you're in college? Well, the opposite happened to me. I was my fittest and skinniest during college because of how active I was. Remarks in jest about my weight and needing to eat a burger were always laughed off, but I resented it and it only further fueled my battle with my image. It's amazing how cathartic it can be to write about your experiences. I don't think I've ever admitted or discussed my body image issues with anyone. Here it is for the world to see, wow. I think one of the most important things for me right now is to focus on being healthy, body and mind.

Shortly after being admitted, I was assigned a Speech Therapist who worked with me so that I could tolerate a speaking valve placed on my ventilator tubing. The first time I tried it, I crashed and nearly fainted from my oxygen saturation dropping so drastically. It had scared the both of us so much that he ended up taking the speaking valve off my goal list for a while. My days became pretty routine and mundane. During my stay, they would transfer me to a cardiac chair 5 times a week (picture below) in order to strengthen my lungs. Depending on the day, I could tolerate sitting up anywhere between 15 minutes - 1 hour. Sometimes it became too uncomfortable and painful for me to stay up. At Kindred, they are very passionate about weaning and it completely makes sense. Who wants to be stuck relying on a machine to breathe for the rest of their lives if it can be helped? They started to wean me off the ventilator the second week I was in the hospital and I did surprisingly well. It motivated me to push myself to go longer and longer without full assistance. I always had a pulse oximeter on my finger monitoring my oxygen saturation. It would go off from time to time when I was weaning, reminding me I had to take deeper breaths. The machine was very sensitive, so sometimes anything could set the pulse ox off and it would cause the ventilator to make a nasty screeching beeping sound that would alarm anyone. It would drive my dad nuts at night when he tried to sleep because my breathing was erratic when I slept. I would be knocked out due to the sleeping pills so I had no idea, but I know he always complained about the machine and how many times it would beep throughout the night.

The lungs are such amazing organs in the body. The primary muscle that drives breathing is the diaphragm, which wasn't functioning. It also aids with bodily functions. You really take these things for granted until you lose them because you're not aware of their abilities on a day to day basis since it's automatic. Your lungs are always trying to collapse from birth and your body's natural response is to keep them inflated through breathing. Contraction of the diaphragm serves to pull the bottom of the cavity the lung is enclosed in downward, thereby increasing volume while decreasing pressure. Since none of it was functioning properly, a ventilator had to manually inflate my lungs for me to keep them moving. I couldn't take anything by mouth because aspiration was a big possibility. The tracheostomy tube stayed in place with neck straps attached to the face plate of the tubing. It was so weird to go from being a self-proclaimed foodie (I'd try anything once and love to eat) to getting fed some beige colored mush through a G-tube. Once I had my tracheostomy tube and G-tube in, I stopped craving food altogether. I would spend my days watching so much TV or streaming because I was so limited as to what I could do as a quadriplegic. I watched a lot of food and reality shows. I also listened to some audio books to pass the time by. My lungs were constantly scanned to make sure everything was okay. I've had my blood drawn over 50 times by now and am glad my Phlebotomy license is of no use because I can no longer tolerate looking at needles much less having to stick someone. About a week after doing well with weaning, I ended up crashing and had to completely rely on the machine to breathe again. It was devastating and a complete kick to my morale. I was frustrated and couldn't understand why there was such a drastic change in stability when I was averaging 8-12 hours a day of minimal assistance with breathing.

My medication list could probably fill out an entire blank 8.5" x 11" piece of printing paper! I was on everything imaginable because my organs weren't functioning properly. I had to get vitamin supplements, high blood pressure medication, sleeping pills for the insomnia, occasional anxiety medication when the sleeping pills just didn't cut it, pain medication, etc. Luckily, everything was administered through my feeding tube. They started me on more IVIG treatments with an addition of steroids through an IV. Though I saw no immediate changes, I remained hopeful. They ended up switching me to a pill form of steroids and tapered me off of it completely because it wasn't working for me and the cons would outweigh the pros. I noticed my face had gained a little more plumpness and my appetite was jolted from using steroids. I had steadily started to gain more weight even though I was still on the feeding tube. My dad would comment on how much weight I had gained and I know it was a good thing and he had good intentions, but it made me feel a bit self-conscious because I hate the word in Vietnamese. There's no other word you could use to describe it in our language other than saying 'fat'. Hate that word.

Early on, Physical Therapy and Occupational Therapy was very limited focusing solely on passive range of motion to reduce my chances of getting contractures. Contractures, or the shortening and hardening of muscles, would further delay the recovery process. I wasn't physically capable of participating in the exercises. I was only able to observe and try to connect my brain with whatever extremities they were moving and in what way. I willed myself to move to no avail. That was particularly a nuisance when I wasn't in a comfortable position in bed and had to rely on others to help me. Can you imagine how many times I had to be repositioned in every which way to feel comfortable? And to have to convey that to whoever was present at the time through a whiteboard with letters on it as a means of communication was just the cherry on top. Bless everyone's heart who stuck by me and was patient. I had family and friends help with range of motion throughout the day, but in hindsight, I wish I would've asked for it more often. It is extremely important to keep everything moving. If you are a family member or friend of someone going through this, please continue to offer to do range of motion with your loved one even if he/she doesn't ask for it. Encourage it several times a day. It doesn't take much effort on your part and he/she will thank you in the long run for pushing him/her. Holding the position for at least 30 seconds 2-3x is enough as studies show that stretching in one position for more than a minute doesn't benefit you further.

Though the course of GBS was atypical for me, the recovery process was in line with what was to be expected. Some time in early April, the numbness was dissipating in my upper body and I noticed that burning sensation throughout my body like the nurses had mentioned and I started regaining movement in my neck and shoulders. I was able to shrug a little and move my neck side to side. Holding my head up posed to be a bit of a challenge, but it got easier with time. As I regained some movement, we placed the touch sensitive call light next to my head so I could tap on it for help instead of solely relying on my parents staring at me 24/7 in case I needed help for anything. Being on a ventilator always poses some risks. I ended up catching pneumonia in my right lung, which they caught and treated right away. The Yankauer suctioning tube became my best friend; it was always by my side. Some days I had to be suctioned every so often and others I had to be suctioned every minute through the mouth due to accumulation of saliva. That was such a hard job for my parents because they got no rest when I had my bad days. I appreciate them in a way I could never had I not gone through this because the amount of dedication they had is just amazing. I wouldn't have survived without their support because there is no way I could call to be suctioned every minute had I been alone. I would constantly have to get my tracheostomy suctioned as well and only the Respiratory Therapists or Nurses were cleared to perform the suctioning to clear out phlegm and whatever else was accumulating in my airways. Getting suctioned is disgusting and uncomfortable; the slurping sound is sure appetizing. It makes you gag, tear up, lose your breath, and makes the machine beep like crazy all at the same time. It always takes a little bit of time to recover after a deep suctioning, but it has to be done.

Family Matters, Communication, and More

Apologies are in order for my lack of updates to the blog! As I promised, I will try to update more frequently, especially now that I am fully able to type on a laptop once more!

I was surprisingly pretty calm about the reality of being intubated. I felt like everyone else was more worried about it than I was. My mom was recounting to others about how she almost 'fainted' because she had to step outside so a team could come in to stick a tube down my throat even though the procedure had been thoroughly explained and fairly simple. It wasn't the tracheotomy yet. I understand that as a mother, it is a terrible thing to have to go through and see, but I felt like she was being a little overly dramatic and making it a little too much about herself. Maybe I wasn't as affected by it due to my medical knowledge, but it's how I felt at the time. I understand that the way she felt and reacted wasn't wrong at all and her intentions were in the right place. It was just conveyed to me in an irritating manner. She kept talking about herself while I was recovering and I felt she could have done that elsewhere instead of me having to listen to it all. I ended up making amends with my sister who I had previously banned from the hospital because I realized that in the grand scheme of things, it was a petty fight and the fight for my life was a bigger issue which I needed all the support I could get for. My cousin, Vivian, was the one that had a heart to heart with me while I had a tube down my throat and she said that we're family and that we'll always have our differences and arguments, but we'll ultimately be there for one another when it counts. She told me to set aside my anger and save the arguments for when I am 100% again. I tearfully nodded in agreement.

Off on a tangent, but it has been really nice to be able to see Tammy again and I have seen her grow so much in this past year alone that it astounds me. The way that she stepped up and helped me out in every possible way makes me see her in a whole different light; I respect her even more so because she is fighting her own demons and yet is still willing to go out of her way to make me comfortable whenever she can. I am forever indebted to her kindness and giving heart. I love you so so much. I know we never say it to one another, but I appreciate you and nothing you do ever goes unnoticed. Jackie is another one that I am grateful for though she stopped coming in. She constantly relieved my parents of their watchful duty every Saturday when she drove up from San Diego so they could catch a break since my mom took the morning/afternoon shifts and my dad came in during the evenings and had to try to unsuccessfully sleep on a makeshift 'bed' (if you could even call it that) of chairs for months on end. I was grateful for the friends that took the time to also help relieve my family of their duties: Dan, Hieu, and Linh to name a few. Other family members did visit a few times, but not as often as my friends did. I was really disappointed with family as this was a critical condition and they chose to not support me during this dark time in my life. Dan took afternoon shifts and would help with any paperwork I needed to complete. He was my liaison as well as Linh. Hieu took over during the nights and stayed at the hospitals overnight when he could to help closely monitor me. I am forever grateful to all those that reached out and made an effort to see me and make sure I was comfortable.

My parents had just come back from their vacation from Vietnam at the end of February just as I was getting worse. I was a bit resentful that they had not come back sooner but later found out that as soon as they heard I was in the hospital, they had indeed tried to find a flight back, but due to it being during Chinese New Year, the flights were extremely limited and the ones available were completely out of budget. It goes to show just how key communication is in any relationship. I had harbored that resentment towards them for far too long during my decline before finding out the truth of what had gone on. I didn't feel like it was the right time to bring it up anyway in the midst of what was going on, not to mention I was no longer able to talk. In the Asian culture, it is normal to not talk about things. You are just expected to understand everything or be complacent and quiet. There is no communication because of a patriarchal superiority complex that is deeply embedded within the community. It is why I always end up butting heads with my father because I am independent and opinionated. I feel like women do have a say and should be treated with respect no matter what. There should be mutual respect regardless of age. Yes, my parents's wisdom surpasses mine due to experience alone, but it doesn't make my wisdom any less meaningful and should also be taken into consideration. Women should be treated as equals regardless of whether you are the 'man of the family'. There is something inherently humbling and dignifying in being able to admit when you are wrong and having honest conversations when there are disagreements, but for my father, it's his way or the highway. I hate that. He isn't always right and he is one of those people who expect too much of others. If you do something nice for someone, do it out of the kindness of your heart. Don't do it with the mindset that that person is going to owe you down the road. Don't expect them to return the favor. That mentality is so Asian and annoying to me. Unfortunately, my father and I are very stubborn and alike in a lot of ways so it doesn't make for a very healthy relationship if you could even call it one. I am nowhere near ungrateful for everything he's done for me and will gladly support him in life however I can because he gave life to me, but you shouldn't have kids if all you expect out of them later in life is for them to owe you. I grew up in an abusive household. It wasn't your typical corporal punishment implementation. Being the eldest, I was mostly on the receiving end, especially when he drank so you can only begin to fathom how I view my father and what kind of 'relationship' we have. My mother never did anything to convene and neither did anyone else. Phew, that was a load of negativity off of my shoulders!

Back to my experience with all the machines! I was monitored frequently whilst on the ventilator for obvious reasons. It was extremely intimidating and distracting being on one. The noises that were constantly bombarding me and having a machine doing the breathing for me was something I never got used to. It prevented me from sleeping. It got to the point where I was hallucinating due to staying up for days on end. I was having conversations in my mind with my friends and family who weren't even present in the room, but I could have sworn they were physically there. I started seeing a fly walking around on the walls. I had to be prescribed medication to help me sleep. We ended up finding that a combination of Ambien and Restoril was what was best for me. Even then, I would knock out for 2 hours at most before waking up again, I would never remember anything the next day. For example, due to incontinence, I had to be catheterized on and off. When I was on the sleeping pills, I would knock out and not even recall anything that happened during that time. I recall also having what seemed to be a mini seizure one night at the hospital and found my head shaking uncontrollably in a side to side motion as if I were saying no. My father freaked out on me and started yelling at me telling me to stop shaking my head and to try and communicate what I needed. Mind you, I had a tracheostomy in my throat and was unable to talk. He so was frustrated that he took it out on me and unleashed so much negative energy instead of running to get help from the nurses. I cried out of distress after, which caused him to be even more upset. I guess that's the only way he knows how to express his concerns, even though it doesn't make it right. He was always very critical of me even though nothing was within my control.

Don't get me wrong, I completely appreciate everything my family has done for me thus far. We all have our flaws, but this blog is meant to be completely honest in terms of my feelings and what I was going through. It doesn't serve to slander any one's character. I just want to highlight the good and the bad that comes along with this journey.

One night during my stay in the ICU of the neurological department floor, the nurse that was helping me suggested a means of communication as Jackie was present. She flipped over the white board with pain levels on one side and proceeded to write the alphabet out on the blank side so my sister and I could talk. That was the start of my ability to communicate with everyone who came in to visit me. We ended up refining the process by creating a system on a whiteboard we purchased. Reading lips is no easy feat. Some people were very good at it and didn't solely require use of the board and some were well, you can guess. This is what my white board looked like:
1. ABCDE
2. FGHIJ
3. KLMNO
4. PQRST
5. UVWXYZ
I was paralyzed from top to bottom with the exception of my face. I would mouth the number, then someone would point to a letter until we got to the correct letter or they were able to read my lips to speed up the process. Two blinks signified a new word. Since English isn't a strong suit for my father, he was the least patient and got flustered easily whenever I tried to communicate with him so I only ever talked to him when I really needed something. Everyone also learned to read my lips for simple things that I constantly needed. Words like: pain, suction, RT, hot, cold, nurse, poo, and pee were a constant staple that everyone was able to easily pick up on.

As I stabilized, I was forced to move facilities yet again. I never thought I'd end up in the back of an ambulance ever let alone having to be transferred to and from places in one over 10 times now! I don't even want to look at the bill for those transfers! This one was especially difficult for me physically and mentally because I was hooked up to a ventilator so they had to hook me up to a portable one just as I was getting used to the one I was using in my room! I was very apprehensive about this particular facility because of all the awful things I've heard about Kindred Hospitals in general. This very abrasive ICU nurse attended to me on the first day and I cried due to her harshness. The room was old, the television set is one of those big hunky square boxes hanging on the wall, and the volume control was out of whack where when you turned it on it would be full blast or not at all. My dad had to cover the sound coming from the remote using a lot of napkins and rubber bands to mute the sound because I was sensitive to loud noises. Not being able to be out in natural light really messed with my head. I had constant headaches and ringing in my ear. I thought I was in a never ending nightmare, but fortunately, the other nurses were more gentle and compassionate. Once I became even more stable, I was moved to the lower floor from their ICU unit and I felt like treatment was a lot better there. I had my own room wherever I went, probably due to my age.

I had a neurologist visit me during my stay at Kindred and she had also concluded that the EMG study only showed demyelination of the nerves still and not actual damage to the nerve itself. I hated the numbness I was experiencing throughout my body in addition to the paralysis because my mind would play tricks on me and make me feel like my limbs were in odd positions. I couldn't distinguish between hot and cold on my skin, but always felt hot on the inside of my body. The AC was always requested to be set pretty low and I never used a blanket to cover myself when I slept. The only way I could sleep was on my back due to the paralysis, which is completely uncomfortable and contributed to the lack of sleep I was getting even though I was on two different types of sleeping medication. I ended up going down to 90 lbs. at my lowest weight from being bed bound and not being able to eat real food. The numbness took a toll on my diaphragm and lungs. I had to be constantly catheterized and I am someone who is prone to infections because it's just my lot in life. I had to continually be on antibiotics several times throughout my stay due to getting UTIs all the time. That didn't aid in my recovery process. Each time I got one, it was a set back. The incontinence was humiliating. I worked at a hospital for a year in 2012 and have had a lot of encounters with all sorts of situations, which developed my empathy and compassion for people even further. I never imagined I'd find myself in such a similar predicament, distinctly at the age of 28. The thought of having to use a diaper for my bodily functions was a ridiculous notion and relying on strangers to give me bed baths and change me was something I really struggled to come to terms with. Involving my parents in the process was even worse because the extra helping hand was needed, but I didn't want them seeing me this vulnerable. I'm pretty modest, so seeing me so bare and helpless was a battle that I had to overcome. You end up having to concede and accept all the help you can get with this disorder.

Science with a Dash of Emotion

Usually, if you are diagnosed with GBS, IVIG is the first course of treatment because it is less invasive and easier to administer. The cost is dependent upon your weight; it can run up to 10k per infusion and mine were always 1 infusion per day for 5 days! Isn't that crazy?! As for plasmapheresis, it is considered more invasive because a surgeon has to insert the Quinton catheter in the neck or near the clavicle before you're able to receive treatment. It was also a 5-day course and usually runs up to 6k per infusion. During plasmapheresis, a technician trained in the process uses a machine to separate the plasma component in blood. Albumin was used in my case to replace the plasma. The second time I received treatment, I experienced hypotension. It dropped so drastically that I almost experienced syncope. I started seeing grainy dots and had tunnel vision. It was not a good feeling at all. The technician had to immediately stop treatment until all stats normalized. He then adjusted the rate of administration, which resolved the side effect. Physicians constantly monitored my blood work and found that my white blood count (WBC) was always on the lower end of the spectrum. It was constantly dropping so in addition to the albumin, they also used cryoprecipitate to try and increase my WBC for the remaining few treatments. An electromyography (EMG) with nerve conduction study was performed by the neurologist to determine the damage in the peripheral nerves of my arms and legs. During the procedure, electrode needles are inserted into the muscle being studied along with flat metal discs taped to the same area. An electric shock is emitted to measure nerve conduction. It was quite an awful experience! I can't imagine how comfortable electroacupuncture is if it's anything comparable to what I experienced. In any case, it was determined that only the myelin sheath portion of the nerve was damaged, which is the most common form of GBS.

Generally, you're only supposed to receive IVIG or plasmapheresis, not both. Research shows no benefits to receiving both. However, everyone reacts to each treatment so differently, so what may work for one person may not be effective for another. I will never truly know whether IVIG treatment just didn't work out for me or if it just wasn't given enough time to work. This is due to the fact that I received plasmapheresis shortly after, which basically filters out all the IVIG. I could understand receiving plasmapheresis first and if that didn't work, resorting to IVIG, but not the other way around. Still, it was better to try.

Being bed-bound with GBS posed a number of complications. Life was quickly spiraling out of control. I never thought I would become so dependent upon people in such an intimate way. I'm pretty modest so having to adjust to wearing a hospital gown, wearing a diaper, constantly getting poked and prodded, and having strangers give me bed baths and change me was something I had to adjust to and accept. Having so many different hands touching you is never something you really get used to. The staff had to reposition me every two hours to prevent pressure ulcers. Intermittent pneumatic compression on the calves was used to prevent blood clots. I had to be fed. Incontinence was one of the hardest things I had to come to terms with. My whole body became so numb that I could no longer feel when I needed to go. This includes bowel movements. I had to take stool softeners to aid me and when that didn't work, suppositories had to be used, and when THAT didn't work, enemas became my frenemy. Although it may seem too detailed, highlighting incontinence and irregular bowel movements is an important aspect of this affliction. It's a common symptom that GBS patients face. I didn't fully comprehend the gravity of the situation I was in. I wasn't prepared for all the complications and side effects. The whole dynamic of how a human body functions under normal circumstances had changed in an instant. When you go through something like this, you can't help but think about how amazing a human body is. The mechanics of it all is truly remarkable. You gain a new sense of appreciation for it. You also learn to appreciate the mundane every day tasks you don't give a second thought to such as washing your hair and face, brushing your teeth, putting on clothes, etc.

My parents's friend happens to be a pharmacist at the hospital I was admitted to. Their friend acted as a liaison between me and the staff + other facilities since nothing else could be done for me at the current hospital. She became my advocate and pushed to have me admitted at UC Irvine Medical Center. It was the best choice for me because it is close to home, nationally ranked, and is a teaching facility so I have more sets of eyes monitoring me. After a back and forth exchange with insurance, at the end of February, my request was honored and I was whisked off by ambulance to my new home. My prayer had been answered favorably, which would be the only time in this whole experience. I am extremely thankful for being blessed with pretty amazing people in my life. You don't find out who will really be there for you until you end up in a hospital. I've been both sorely disappointed and pleasantly surprised. My friends have made me more of a priority than some of the people I call family. You make time for the things and people you want to make time for and I just didn't make it onto their important list. It's a harsh reality, but dwelling on the negative doesn't help anyone so I've just come to terms with it. What I've shared doesn't serve to dismiss family or diminish the support I have received from some of them. I am nothing but grateful to all those who buckled up and went on this roller coaster of a journey with me and being my voice when I had none. Some friends went above and beyond to ensure I was getting adequate care, I wasn't lonely or sleeping alone, and I was getting proper nutrition. People offered me their personal accounts so I can listen to music, book audio files, and streaming accounts so I'd never be bored. I love them to the moon and back x infinity!

UC Irvine Medical Center has a nice new building with a floor for neurological disorders. The staff was extremely friendly and bubbly. They made my stay a bit more comfortable and everyone there seems to really love their job. As the days passed, my friends and I noticed that my eating habits were changing. It became harder to chew and swallow certain food items. Even simply eating would tire me out. Due to this new onset of symptoms, my respiratory rate and oxygen saturation became heavily monitored. GBS eventually claimed my respiratory system in early March. Up to 30% of patients progress to respiratory failure requiring ventilation. Being ventilated with my mouth constantly open was a very unpleasant experience to say the least. For someone like me who has a medical background, I like to be informed on all matters before agreeing with any treatments and procedures. I was stubborn yet again thinking that it would not get worse, but after a week I succumbed to the idea that I was going to be in this for the long haul. Being ventilated is one of the most uncomfortable experiences ever. I was heavily sedated with a fentanyl drip to keep myself comfortable. They finally had an opening the following week to put me on the list for a tracheotomy and gastronomy feeding tube insertion. That was the day that I lost my voice. I was surprisingly calm and unfazed by what was to come. I knew they were going to do a great job and that there wouldn't be any complications. I awoke to the familiar faces of friends and family.

I have never felt more frustrated, isolated, and helpless than when I became a short-term quadriplegic hooked up to a ventilator that became my lifeline. It was a fate that wasn't expected and one that I didn't want to accept. I went from living a normal active life to being completely paralyzed and trapped in my own body in a blink of an eye. I didn't want to be completely dependent upon people. The only thing I had any control over were my thoughts, but even then, they were unpredictable at times. I would never wish this upon the worst of people. Never once did I question, 'Why me?'. I've always gone through life with the strong belief that you're never thrown into a situation that you cannot handle and/or learn from. A strong mindset will take you further than you can fathom, especially with a disease such as this. It's what has helped me remain so resilient and positive. You need to believe in yourself in order to overcome. Everyone will hear the saying, mind over matter, at least once in life and it's not without reason. It's a simple truth.