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!