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.