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!