My Weekly Challenge

Forgive me for skipping past the few weeks, but it's not to say that I haven't kept my word. I've had periods of exhaustion to the point of not being able to get out of bed and a lot of visitors from out of town flew in so I spent the majority of my time hanging out with my besties. I've put myself out and there and actually take the time to get to know new people I'm meeting for the first time. Normally, I'm pretty to myself and quiet, but I've noticed a shift in that even when surrounded by mostly strangers. You just have to learn to try new things and get out of your comfort zone. I am waiting on authorization to see a rheumatologist, podiatrist, and physical therapist. Hopefully they all get approved soon. In the meantime, I signed up with a personal trainer to get things going again so this is new. I'm also learning about new techniques for cake and cupcake decorations and can't wait to show you all what I've been working with. There are several other projects in tow as well. Here's to praying it all comes together. I took the dog out for a walk last night and decided to try jogging again. My knees were surprisingly strong enough to withstand it for a few seconds before starting to buckle. It'll get there though and I am extremely thrilled about this new revelation of progress considering I just started regaining my mobility 5 months. Starting to be able to jump for joy too, just not with the knees bent in a 90 degree angle quite yet...just a straight up and down. Utah in May will be my first big road trip and long hours of driving since our last trip to Arizona. This will be interesting!

My Weekly Challenge: Going to the Theater Alone

A part of the reason why there is such a stigma on doing things alone is because we as humans are social beings. The concept of doing activities alone doesn't feel normal to us. How many times have you seen someone eat alone and you automatically felt sorry for that person? I've been guilty of it for sure. I've eaten alone, but that was less of a choice and more out of necessity to sustain myself during a work shift. I think it's important to be able to do things alone. It's empowering and helps boosts confidence! Aside from that, sometimes you just don't want to be social. I challenged myself to go see Beauty and the Beast solo over the weekend. I had reservations about it, of course, because I've been so used to always going with others. Aside from the fact that people still don't understand the concept of reserved seating at the theater I frequent, it turned out to be quite enjoyable! Beauty and the Beast is a part of my childhood, so seeing a live-action version of it was something I was very much looking forward to ever since I heard they were making it. Most of my sisters already had plans to go see it with other people, so I took that opportunity to try something new! You're not supposed to be talking during a movie anyway, so flying solo wasn't so bad; plus, it helps that there's still people surrounding you. We all laughed and felt sad at the same time so it's still social in a way. Added perk: you don't have to share any of your popcorn or drink with anyone! I think I will be watching more movies alone from now on.

The visuals were vibrant and breath-takingly beautiful. I thought, at times, the beast looked a bit too fake, but that is one of my few gripes in regards to the film. I can't believe there was an uproar about the film 'veering' off course and adding a gay character where there wasn't one. No, really, did they even watch the film? I feel like it might have been faked to garner more attention for the film because the character did nothing to detract from the plot and didn't even act upon his feelings. There were some subtleties in there, but nothing major. I thought Emma did a great job, except for the ending, where it was kind of anti-climatic. Her reactions to the beast getting shot could have been better. Overall, I was very happy with the film, thoroughly enjoyed their additions to the animated film, and loved the new music in there. I want to go watch it again!

My Weekly Challenge: Vibroacoustic Therapy

Getting a second chance at life has opened my mind to more possibilities than before. I have been working on communication and making sure not to let things fester. I have made time for those who I normally wouldn't make time for and tried experiences such as Vibroacoustic Therapy, which I never would've given a second thought to had it been brought up pre-disorder. This new openness has invited in such positivity that I don't ever want to go back! Vibroacoustic Therapy was the most serene and calming experience. The vibrations of the bed made it feel like I was floating on clouds. Coupled with noise-canceling headphones playing different sounds and a heavy beanbag-like eye cover, it was as if I was being whisked away into another dimension. My shoulder and neck pain dissipated. Was I on anything? No. The next day, I felt extremely energized and rejuvenated. I'd highly recommend it! There was a chiropractic convention going on recently and that's how I found out about it and tried it for free.

This is a late post because I had no energy or will to finish typing anything up last week. Unfortunately, since tapering off of Prednisone, I have had less energy to do things and feel exhausted by mid-day even when I do nothing in the morning. I'm glad to be tapering off enough to stop experiencing the nasty side effects, but I'm also a bit sad that the feeling of invincibility and burst of energy I felt went away too. I do attribute my walking to Prednisone and am so thankful for it, but I have experienced extreme frustration with it as well. I am no longer comfortable in my own body. I am bloated all the time and it is extremely hard on my feet and ankles as it causes swelling. I retain water like crazy, so my weight makes me depressed. My face resembles a balloon and I've never had acne this bad (even in my teenage years). Thankfully, these symptoms are supposed to get better with the lower dosing and will eventually go away completely when I am no longer taking Prednisone. I can't wait for the day I no longer have to rely on any form of medication to go about my daily life. I am currently receiving my monthly IVIG infusion this week and am glad that my vein is holding up and lasted three days so far! Here's to hoping it'll last two more days so I don't have to be stuck again.

Thomas's Story

"My name is Thomas, but everyone calls me Tommy.

I was a painter on Vincent Thomas Bridge in San Pedro, CA and loved it! I have CIDP and was diagnosed in July 2009 at the age of 40 and it is one of the hardest things I've ever been through still. Paralysis started in both of my hands and moved up my arms during the initial onset of symptoms. Before it got even worse, I went to my primary care doctor who suspected I was experiencing Carpal Tunnel Syndrome. A nerve conduction test was performed and results confirmed my doctor's suspicions. I was scheduled to have surgery for Carpal Tunnel Syndrome until the weakness and eventual paralysis moved to my legs. I started having trouble standing up from a seated position and my legs inevitably gave out completely as symptoms progressed. The doctors became baffled by this new symptom. I went to see a neurologist who let me know what I had was very serious, but couldn't quite verify a diagnosis of CIDP until all the tests were performed and the results were interpreted. The tests and results took 6 months and by that time, I was constantly falling down. I recall my wife and I being extremely scared, thinking I was dying. Within that waiting period, I went to see numerous doctors and was finally admitted to the hospital. A spinal tap or lumbar puncture was performed showing elevated protein levels, which is an indication of GBS/CIDP. I was started on an IVIG regimen and was told that my life was going to change forever. The doctor handed me a 1 page print out on CIDP and left.

The IVIG treatment was successful with immediate results. I quickly regained the use of my arms and legs, however the weakness was most prominent in my legs so I had to be discharged from the hospital with a walker. I was able to return to work for about 3 months, thinking I was back to my normal self, but in January 2010, I relapsed, could no longer work, and had to retire. It took a lot longer to regain the use of my limbs this time around. The walker became a constant companion once more. I eventually upgraded to a cane for a couple of years. Some days I feel better than others. Other days will be very fatiguing and painful, which limits my ability to do every day tasks. My wife and son are my biggest support system; without them, I'd be lost. I now receive IVIG treatments (45 grams) for 2 days every 4 weeks."

I often see that fatigue is a common residual effect of GBS/CIDP. Whether that gets better with time or not is dependent upon each individual case and their will. I feel like a lot of people who have suffered through the same syndrome are oftentimes too critical of themselves and their capabilities. I know I certainly fall into that category. The couple weeks ago, I was determined to get through the Kenpo portion of P90x to get back into shape and only got through 10 minutes of the actual workout since there's a warm up in the beginning. It was a little hit to my ego because I used to breeze through that workout. I accepted the fact that I am not far enough along in my recovery to do such crazy cardio just yet. I am happy to hear Thomas has a great support system. I don't think any of us would get this far without strong support from loved ones. We're very lucky! Keep strong, Thomas, and never give up!

My Weekly Challenge: A Hiking We Will Go

I know bread-making ended up spilling into this week, but I went ahead and did something anyway for this week! My physical therapy is still being figured out (I think) so since being released January 10th, I haven't had any sort of real therapy other then what I've been doing on my own. I know it's not enough because my legs (especially my knees) are still pretty weak. I try to commit to working out for at least 30 minutes a day as well as going on a 10-20 minute walk around the neighborhood. I also stretch every day, but don't quite have the tools to really work on my legs. I have resorted to doing some squats by hanging onto the door frame on either side for support. It was something my chiropractor suggested, which I thought was genius because I can't do free squats yet.

I planned a hike at Peters Canyon with friends on Saturday, March 4th knowing it was going to be great weather! It was a beautiful day, perfect for hiking. We started around 8:30 am and finished around 10:30 am. This hike is considered medium difficulty. There is one point that has a pretty steep incline, but you can opt to go around if the task seems too daunting for first-timers. I have been on this trail a couple of times and never had any trouble with it. However, due to my condition, this experience was pretty challenging. I am so proud of myself for not giving up even though it got pretty tiring at times. I had to take a few breaks every now and again, especially after inclines. Everyone in the group were such great sports about it, extremely encouraging, and supportive! I enjoyed it even though I was hurting. I think the only reason why it's so hard on the feet is due to the corticosteroids I'm taking (Prednisone). It causes my feet to feel so uncomfortable when I am on them. The pressure all goes to my heels causing extreme discomfort and my swollen feet and ankles don't help. Hopefully we get me to a tapering dose where I don't experience these nasty side effects but still receive the benefits of taking Prednisone. Here are some pictures from today!

 The beginning of the hike with great company!

 Beautiful scenery due to all the rain we've been getting in California! The last time I was on this hike, the landscape was pretty barren and dead.

 I powered through some hills and this was the steepest one. This photo doesn't do it justice!

Beautiful day for a hike!

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.