Welcome to Kamillah Emlyn's SkyRise Site
Hey, All! Thank-you for stopping by my site to learn a bit about my story and the inspring progress being made every day at the Shirley Ryan AbilityLab (a.k.a. the Rehabilitation Institute of Chicago). Please consider donating to SRALAB to help support their mission and allow them to continue helping people like me try to take back their lives when unforeseen circumstances take from us abilities that are easily taken for granted.
This year, I decided to participate in SkyRise Chicago--at 103 flights, it's the highest indoor tower climb at the Sears Tower (Yep, I'm going to keep calling it that.) to raise funds and awareness for the nation's best rehabilitation hospital--the Shirley Ryan AbilityLab. It's a 103 flight climb to the top, and over 2,000 steps. I'm about 70% sure I can make it to the top--but that's much more certain than I felt a year ago this time, when I had been in ouptatient physical therapy (PT) at AbilityLab for 3 months. Please considering donating what you can to support more rehabilitation research.
Read on, if you'd like to hear more of my story. But, if your eyes are glazing over at all my text filling your screen, I won't hold it against you ; ) I'm known for this. Go ahead and skip to the end.
I walked into SRALAB more than a year after first experiencing persistent pins-and-needles, numbness, and sensory loss in my legs and feet. Eventually, I was diagnosed with small fiber sensory neuropathy of no known cause--a nerve condition that impairs the nerves in the skin that signal sensation, temperature, and pressure. Over time, it progressed to impaired balance, chronic knee and back pain and a slew of tendinopathies, which "may or may not be" related. No one can be sure. The pain, the uncertainty, and having to let go of doing things the way I used to do them at work, at home, and just for fun saps my energy and sometimes threatens to pull me into a depression. Sounds cheesy, but sometimes I'm down, but I don't want to be out.
If you know me well, you also know that I like to follow the procedure, and I like to be certain--and now 2 years later, I am certain that this is one area of my life that will definitely be uncertain and will only follow some semblance of a procedure! (ARGH!!!) Even now, sometimes I'm still so sad, but I'm also certain that the therapists at SRALAB gave me hope and helped me regain much of the ability I thought I might have lost forever. They were among those who turned their minds toward problem solving and didn't give up on helping me find strategies to strengthen my body and and navigate the minefields of chronic pain. I have a LONG way to go, but I'll be forever grateful for their persistence and the real-world physical therapy and symptoms management strategies they could offer when others could not. They do so every day, with patients from all abilities, and they do so with patience, expertise, and kindness.
SRALAB provides world-class rehabilitation care to thousands of patients for traumatic brain and spinal cord injury, stroke and cancer recovery, and more. The funds raised through SkyRise Chicago 2017 will directly support advances in patient care and cutting-edge research at SRALAB.
SkyRise Chicago is the only tower climb in the world to offer two modes of participation - by foot up the Willis Tower stairs and via stationary hand-cycling the equivalent distance uphill. These options give anyone, no matter their level of ability, the opportunity to participate.
Help me as I challenge myself physically and mentally to complete the climb and support SRALAB, a not-for profit hospital organization. Your donation will help SRALAB continue to provide patients with world-class care for the brightest possible future.
Thanks also to my parents--my sister and all my family, along with my friends, medical team, and co-workers for all your support =D
My Personal Web Log
One Week Left!
I can't believe it's just one week left until the tower climb! I had wanted to blog weekly, but the fall just flew by.
There was a long stretch of time when I just really was not feeling well through most of September though--it was just ugh. I'm feeling better now though, but I still have some hard moments and hard days. Two years of seeing specialist after specialist and working through physical therapy and getting minimal (though significant) gains, but not many definitive answers finally took their toll on me in September. Even with all the physical therapy, I still keep getting pain flares, and my baseline level of pain still includes chronic swelling in my knee. Which has now become chronic swelling in my wrist and thumb =/
One of the many people I consulted was a rheumatologist, but I put that on pause until even I had to concede that even with less pain, I have chronic swelling. Finally I went back to see her in September, but her proposed diagnosis was still just as murky. Her best guess ("hypothesis," I suppose) is that I have a form of auto-immune inflammatory arthritis called spondyloarthropathy--in short, it's like rheumatoid arthritis (as opposed to "wear-and-tear" arthritis, this is caused by your immune system attacking the linings of the joints and can debilitating if not managed), but it does not show up on a blood test.
It's part of a family of inflammatory conditions that tends to run in families, which his why she thinks I might have it, because other related diseases DO run in our family. As if inherited acne weren't enough, right??!
Anyway, the point is, I brought myself back to her office, but the treatment is kind of limited--there's one "well-tolerated" drug and other that suppress the immune system and can be therefore dangerous. The act of doing that just made me depressed, like getting sentenced to lifelong pain, if neither works. It stinks.
Well, where I want to go with this post is that I still think it stinks, and I still think it's a process, but even when I thought I was beaten down and just tired of trying new things, I surprised myself and am picking myself back up (with a LOT of help, thank you to all), messy a process as it is. It's funny how sometimes a door can open at just the right time--many of you know I stumbled into a small, but brilliant yoga studio in the Loop, Room to Breathe, and it really did give me much-needed room to breathe. It's helped me practice the resilience I didn't know I had, and they're also linked up with an integrative therapy practice, which is how I met my current pain management therapist.
It's the same way I found RIC, although a little less random--thankfully my primary care physician at Columbia specifically pushed me to go there for physical therapy--a new door opened for me. That's how I think of it now, maybe I can help other people find the new door they need to see the possibilities they didn't expect.
P.S. 18 minutes, 30 seconds now! I started at 2 minutes, 30 seconds. That's way short of the 30 minutes average climb, but puts me in striking distance to finish strong at my own pace.
by Kamillah Ong on Sun, Oct 29, 2017 @ 7:21 PM
Just keep swimming, just keep swimming...
That makes the "Finding Dory" song/saying get stuck in my head. I like that movie; didn't really love Dory from the first movie, but I liked the "Finding Dory" movie =) Today is Saturday, and I'm supposed to have Zumba at the Addison Park District fitness center, but it got cancelled! I love discounted classes, but it's kind of aggravating that they frequently get cancelled at the last minute. The up side is that this has happened so many times, that I finally started brining my pool gear with me in the mornings, so that I can do my pool therapy exercises if Zumba gets cancelled--I REALLY didn't feel like changing (it's unseasonably cold here for not-fall), but I figured I got up early, the pool was basically empty, and I was already there...otherwise I'd have to come back again tomorrow. So, I did it, and I'm glad I did =)
My PT at SRALAB referred me for "aqua therapy," aka pool therapy, when she surmised I had a chronic pain condition. It was the second huge turning point in PT, after learning how chronic pain affects your body and brain differently than acute pain. Aqua therapy sounds much more attractive than it is--it's hard work! The good thing about it though is that the water takes off much of the weight from your body, but still provides resistance, so in a case where it can be too overwhelming for your body to use all of its bodyweight, like in squats, working in the pool can really help because it removes some of the strain and allows other muscles to kick in that don't get used as much out of the water. Finally, my core started getting stronger and I could do bodyweight exercises for my patellar tendons (in the knees) without straining the other muscles that compensate. Ashley, my PT, told me it can sometimes be really good for chronic pain patients because the pool can trick your brain into thinking it's "safe" to strength train, rather than flooding the body with pain signals. Fascinating, right??! Ok, it might just be me, because I think this stuff is really interesting. I just never wanted to use myself as the guinea pig. I'm doing my best to get to the pool weekly since I was discharged from aqua at the end of June, and I think it's helping. Fingers X'd.
by Kamillah Ong on Sat, Sep 09, 2017 @ 1:41 PM
Michael's Joined the Tower Climb!
*Yay!* My cousin, Michael, ever-patient and always willing to accommodate for my finicky knees on our adventures registered for SkyRise 2017.
A few months ago, we went to Matthiessen State Park (across from the more famous, Starved Rock) to go hiking. I was concerned about the amount of stairs involved--you don't really realize how many places in the world aren't considered handicap accessible, until it becomes a serious necessity! I later learned that this is one of example of how/why chronic pain patients can become hyper-vigilant to the point that it's paralyzing because you're always on the lookout for potential pitfalls and suspicious of new places, new people, new foods, etc.--it's extremely difficult to know what might cause a pain flare-up that could last for days. While it can be terrible, it's weirdly fascinating how the body and brain interpret your environment--I guess it's a good thing I've become a chronic pain nerd.
Anyway, it was pretty awesome, because Michael and VJ scoped it out on another day--scoping out the more stair-infested paths, so that when we went together, we could avoid them! And bonus, we accidentally found what seemed to be a handicap-accessible path, or at least it seemed to be one, because it was completely paved, flat, no stairs! And of course not marked as such, in any way, for people who could benefit from it! But the up side is, now we know it's there. I was able to do some stairs and still survived the hike =D
Which we promptly celebrated by eating deep fried cauliflower and onion rings haha.
To donate on Michael's behalf, in the menu above click DONATE > INDIVIDUAL, then search by name.
by Kamillah Ong on Sun, Sep 03, 2017 @ 12:46 PM
Phew! I did it!
I finally registered for SkyRise Chicago 2017, after pondering and pondering! I'm about 70% certain I can make it to the top--hopefully 70% and growing. Last weekend I stair-trained up to 4 minutes, 30 seconds--but that was going both up and down. The registration website says the average participant takes 30-45 minutes, but am I an average participant? I'm kinda not sure lol.
With a chronic pain condition, I'm supposed to gradually increase time or intensity, so I'm sticking to that same playbook that got me to steadily increase my strength and function. I'm on the fence about trying to add on 15-30 more seconds today though, because it's getting late on a Sunday (Sunday blues >_<) and the tendons in my legs were burning a bit yesterday after Zumba. But...I went to Zumba, so victory there.
Thanks for reading!
by Kamillah Ong on Sun, Aug 27, 2017 @ 7:44 PM
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