Wheelchair Lacrosse & the Medical Anomaly

Since Dumbo, I haven't been training much in an effort to get my shoulder to calm down. Nothing was helping; it would get better and then get worse again. I asked the Ortho about it, but he didn't want to do anything because of his suspicions about my leg.. he wanted to wait until I see those other doctors (more on that later). Last Saturday, I spent most of the day on my crutches and felt pretty good after, so I went for a 30 minute run with Tsunami Monday morning. It didn't feel great, but not too bad.... but the sharp pain came back and got worse throughout the day until about 8pm when I suddenly lost strength. And I was off to the ER.

I told the doctor about the muscle spasm and that I just needed a trigger point injection, but I was told they couldn't do that in the ER.... so they gave me a shot for the pain and sent me home with a prescription for a muscle relaxer (it was past midnight and I didn't want to stay long enough to wait for a sedating shot to wear off enough to drive) and something for the pain. Tuesday was a drugged up blur of naps. Wednesday and Thursday were better and I got to spend some time with some of my favorite people, plus a job interview/meeting! Friday, I went to the doctor for a check up from the ER.

She went through my records and found that the referrals for neurology and rheumatology hadn't been done, so she did it. Then actually explained why she wouldn't do the trigger point injection, gave me real advice on how to manage the shoulder, and gave me different drugs that would also allow me to function. Basically, the fear is I have reflexive dystrophy (which is a condition of "intense burning pain, stiffness, swelling, and discoloration" and is still very much a mystery, so the cause usually listed is a "short circuit" in the nerves... which would nicely round out my title of medical anomaly) and if I do and they give me the shot, it could potentially kill my arm because of the over-reactions the condition causes. So I spent the rest of Friday trying out the new medicine, along with heating, stretching, and foam rolling.

I had to because Saturday I was signed up for a Wheelchair Lacrosse clinic with the Challenged Athletes Foundation and I really wanted to play! The medical gods seemed to smile on me Saturday morning... I had woken up in the night and needed to take more medicine, but in the morning it wasn't so bad. I left after taking just an anti-inflammatory and a pain pill. By the time I got to the clinic in San Jose, I was doing really well and got even more distracted meeting lots of fun, new people. While we were suiting up, I had forgotten all about my shoulder. We spent about an hour learning about the game, then throwing and catching, which caught onto pretty quick and was able to utilize the advice from both coaches and the guys that had played before. After a water break, we did some moving catches and taking shots at the goal. During lunch, I had planned to take another anti-inflammatory, but I didn't even think about it until we were back in the rink and it was a fleeting thought.

A stick, armor, and a battle chair... bring it on!!

We only had ten people playing at this point (we had lost a couple during lunch), but we decided to do a half court scrimmage so those of us that were new to the game could get a feel for how it was played. I was taught pretty early on in life to trust sports equipment and my own reflexes, so I had no problem heading right into the fray... especially with the coach on my team encouraging me and throwing out advice as we went. I got into a few battles for the ball, took a hit to the chest, and even scored a goal! One of our cheerers (who knew the game) questioned my beginner status when we were done playing, the coach on my team and one of the other guys called me a natural. It's been a long time since I played a team sport, and this was the first time in a wheelchair. It was a good feeling to be back in the environment, to work with the others, to cheer and be cheered on for something as simple (or hard) as catching a ball.. all the way to being able to put everything together in a game, and fist bumps for reaching mutual goals. While I do enjoy the solo sports in that I rely on myself and push my own limits, it's good to have that time to work with others and have the mutual encouragement, team goals, and pushing each other's limits.

At the end of the day, I went home with some CAF gear (and information) and a Lacrosse Wheelchair USA shirt... and I could turn my head with no pain, there was no sharp pain shooting down my shoulder blade, and the muscle weakness in my arm wasn't nearly as noticeable. While I did get some heat on my shoulder, I didn't have to take anymore drugs for the day... I did take an anti-inflammatory today though, just in case.

My awesome new shirt one of the coaches gave me... he apologized for only having an XL, but I'm good with it ;)

All cleaned up, fed, and tired at the end of the day!

Aaaaaaand all the cool CAF stuff I came home with

Doctor Update: Still In Limbo

I went to my new doctor with this on my iPad... it definitely got some attention. The nurse practitioner that came in first and asked what was going on, so I handed over my iPad. Her eyes got wide and she told me I was quite prepared, then went on to ask more questions and examine my legs. She quickly discovered that her scrap of paper she brought in for notes wasn't going to cut it, but she squeezed in what she wanted on both sides.

The doctor came in next, said he had been updated on my symptoms and asked for a quick history... it's kind of fun to sum up 20 years of medical problems into a paragraph, but at least he was fully engaged in listening. He asked his own questions, confirmed the lumbar MRI showed nothing, and did his own exam, then said I was a big question mark. He wanted to shoot my hip, said I should be doing physical therapy, and decided to send me to neurology and rheumatology. I told him the last shot into my hip was horrible, and I preferred going to the other doctors before trying physical therapy again. He countered by saying physical therapy is something I should be doing at all times, not necessarily going to a therapist... and added that relying only on physical therapy at this point would be bullshit.

I can't tell you how hard it was not to announce my new idea for a Doctor Royal Rumble; first match, the guy that claimed tight hamstrings, the guy that claimed I needed stronger quads, the lady that wanted a different kind of physical therapy to "even me out", and the guy that just basically said all of those theories are bullshit!

But anyway....
Two new doctors! Basically, he says I have too many conflicting things going on for my problem to be strictly structural, so he wants a neurologist and a rheumatologist in on the game because there's got to be something going on inside that is pretty much negating any help that should have worked already. And I'm "too young to resort to a wheelchair for joint pain and/or arthritis", especially since I lost most of my strength while still keeping my legs active.

I'm calling this one a step forward, and I'm hoping at least one of the new doctors can keep it going!

Kayaking as a metaphor...

I went kayaking this morning and had a moment where I realized two things... first, I had taken a big step and second, that step led me to feeling like that's how my last couple years have been.

Let me back up a bit. The place where I go kayaking starts in an enclosed, calm marina. The first time I rented a kayak, the guy told me I should head to the right as soon as I could... that leads into the lakes and is relatively calm. He then warned me that if I went out straight, I would go right into the river, where the currents can get pretty rough. Over the last few months, I have always headed to the right and wandered around the lake, occasionally heading into the river a bit to test the currents. Today, something compelled me to head directly to the river. I fought the currents, I rolled with them, I eventually used them to make it back into the lake. That's when I had the moment...

Right here...

I was sitting there watching the sun shine on the water, still rolling on the currents (you can't tell in the picture, but the front of the kayak isn't actually touching the water) and I thought about what I had just done.

I was recently accused of saying "I can't" far more often than I used to, and a lot of that is coming from the increased pain, but also from my learning to push those boundaries on my own. Growing up, there are a lot of stories of my mom hearing my brother announcing "that's awesome!" and coming out to see that I had climbed something tall, or me doing something because I was told "girls can't do that". I didn't realize how much my brother had shaped who I was until losing him made my whole world shatter, and I found myself relearning these things as I picked up the pieces. Learning these things as a child was easy... I was learning everything at the time, I was invincible, and I had someone  with me (who was a bit ahead, but still learning himself). While I have the support of those around me, I'm on my own this time. No one else is on this path with me, I'm just trying to get back on my feet, and I suddenly have a huge mistrust of invincibility.

So last night, I decided I was going kayaking no matter what my body said this morning. And once I was on the water, I headed directly into the river. Like my last two years, it was a little crazy.. one wave after another hit the kayak and I almost rolled a couple times, but I hung on. I made it to the point where I usually access the river and headed into the lake, still rolling on the currents. It takes some distance for the water to calm... I'm in this distance somewhere in my own life. I took the hits and now I'm trying to make it to the calmer area.

I've been held back for various reasons and my own various thoughts. But I'm also learning that friends with good intentions have held me back a bit.... friends that are at as much of a loss as I am as to what help I need or are still concerned with my healing process. The water doesn't care. I have to take care of myself, I have to remember the things I've learned.. to keep moving, to keep myself upright, to move in the right direction. It's always there to catch me if I fall and it doesn't disappear if I have to turn around to try again, but it's not going to cut me any slack.

And in that moment, I realized that's what I need.

Learning and accepting the wheelchair or crutches is going to take a while, just because I'm still in limbo on the fate of my legs and I refuse to jump in fully until I'm more confident I won't have to start all over. Again. I will need help, it's the nature of the beast. I just don't need to be coddled.. I do need to learn these things and I can't do that if I'm not allowed to try. For the last few months, I have actually been celebrating the moments where I'm left alone so I can clear a lunch table, or pick something up, or figure out how to reach something, or scope out how I'm going to leave an area, or get myself something before my company comes back. I'm quite proud of myself when I'm actually asked to do these simple things because it means I'm being seen as a person, and not as a person in a wheelchair.

As for the personal healing I need to do... keep the hugs coming, but stop acting like I'm going break! When someone pauses on a word and changes direction, or apologizes for bringing up my brother, or doesn't know how to respond because I do, or asks if it's okay to talk about something, it makes the healing a conscious effort. It make me feel like I should be reacting differently... kind of like when a kid falls; if you react, they think it's time to cry. I have to live the rest of life without my brother and I need to learn how to do that, while still remembering him and acknowledging that 33 years of my memories have him there. Just like learning things with the wheelchair and the crutches, I can't do that if I'm not allowed to try.

Basically I'm asking you to be the water. Be there to catch me, understand when I have to try again (I'm doing a lot of testing different things right now), but don't cut me any slack. If you wouldn't have done it for me two years ago (or even 10 months ago), at least let me try. And I know it's hard, but wait for me to ask for help.... feel free to stay close because I might need help fast, but let me have my confidence back, the control over myself.

That's been a major point that's been lacking. Confidence, and some frustration, is what led me out to the river this morning and it is what kept me there.

Confidence is what is going to get me back to saying things like "I don't know if  I can do that 'dangerous thing', but I'll give it a shot!" And hopefully I can find someone in the area to announce loud enough for my mom to hear, "that's awesome!"

Dumbo Again!

I had to defend my title. Had to see how far I had come since my first half. Wanted spend time with my friends. Wanted to see my friends at the race. Needed a break in Disneyland. All those things had me going back to the Dumbo Double Dare. Things didn't really go to plan.

After finally getting back to Tsunami after spraining my fingers, I happily discovered that I had become the poster child for cross training during an injury; I was able to pick up my training where I should be instead of where I was. Then the nerve damage/muscle spasm in my shoulder decided to show up about 2.5 weeks before leaving. I did everything I could to work through it... ice, heat, stretching, tape, and finally entirely resting the whole week before we left. Some personal stresses didn't really help either. I kind of felt like hell.

It was good to be with friends though.. and to see the ones I mostly only see at Disney. And it was really cool to stay at the Disneyland Hotel (for the very first time!), albeit getting spoiled by the quick walk to the start line in the process. And as an added bonus, Stitch was the theme for the 10K... aaaaaand I had gotten the best jersey EVER for my birthday!!!

Uh.. spoiler alert; I managed to finish the 10K.... but check out my jersey!

They very much improved the expo from the chaos that was last year... of course, we made our own when I decided to go up the elevator while my friends went up the ramp, thus splitting the group up. Aaaand guess what, my phone had died during the drive down. After searching with a Cast Member that had seen them, she let me use her phone (fortunately I have the number for my Rabbit friend on an emergency bracelet) and I eventually was able to tell them where I was.

Turns out they made other improvements as well. The morning of the 10K, we ended up with an escort after voicing our concerns about getting to the ADA tent without getting stuck in the crowd like we did last year. Our escort's job was done about 20 feet later when we saw that it was a straight shot to the gate by the tent. This time, I was able to talk to everyone, and meet a woman doing her first 10K, before needing to switch chairs. A couple friends also came over for pictures! Aaaand then we caused our usual shenanigans at the start line... the take us up so early, we have to keep ourselves entertained somehow!

I started the 10K by spending the first mile trying to straighten my front wheel.. apparently Tsunami thought we really needed to go to the right. After that, I was able to push better, but my shoulder didn't want to play. I believe I told it to shut up. Fortunately I don't think I said it out loud. At the end, it turns out I took 3 minutes off my 10K time from last year. It was fun to go through the finish because I sat up enough to show off Stitch and they were sure to announce it... I got many compliments on my jersey while I waited for my friends to come in.

And we even all survived....!!

We were able to wander the parks a bit, have an early dinner with friends, and check out the Pasta Party in the Park (or something like that) for a few minutes before we gave up and headed back to the hotels to go to bed. There had been an announcement for a pre-half photo-op at the ADA tent at 445am. We kind of slid in sideways for the pictures, but we were able to take a few group pictures and I got to talk to everyone (I was also instructed that I HAD to defend my title... I had competition this time) before our Start Line escort announced we had to head over. Once again, shenanigans ensued...

They left us unsupervised again... (photo credit to the selfie taker up front)

I had fixed my front wheel and had my shoulder taped the night before, so this takeoff was much better. I didn't fall behind nearly as much this time, but when I looked up I couldn't figure out if everyone had passed me or not. The parks went by smoothly, then I headed towards the overpass... it was nice to remember my parents standing on that first corner last year. A man ran up next to me and asked how I was doing and I told him I wasn't looking forward to the incline. He announced that I would do great and that I "eat hills for lunch!", then ran backwards in front of me for a bit cheering me on. I had several of those moments for the next few miles; a friend was out on the course taking pictures, I smiled when I got to the point where my Rabbit caught up to me last year and got me going again, the mile of car show had some great cheering (one lady told me I was 4th or 5th... which was when I realized I must be in front of the other female push rim), a man helped me when I thought I was going to flip on the hill during the trail part, I made it through the stadium unscathed this time (and even up that ramp I had been worried about), a man that was spectating rushed over to help me when Tsunami's rim started coming off then cheered loudly as I headed off again. At that point, I saw that my goal of taking my time under 1:40 was just barely in reach.

3 miles left and I took off on a sprint. I believe those last three miles were all about 7 minutes or under. A friend cheered loudly as I passed him a little after mile 12 and gave me the boost I needed to get to the finish. I finished with a wave of cheers... and was one minute over my goal. Something to shoot for next time. I was glad I had even made it that close with recently recovering from a hand injury, then fighting with my shoulder. It still showed me how much I have improved from a year ago, and with my own chair. I ended up taking 3 minutes off of my half time from last year as well! And didn't crash this time!!

So yes, I wasn't entirely prepared for this race or this trip, and things didn't go as planned... but they did. Kind of. It was a bit harder than to find my fun and inspirations and such, but I made it. I defended my title, spent time with friends, got to see how far my training has come (going faster even with injuries is pretty telling), and I got a bit of a break at least.

And hell, I got my picture with Mickey.. can't complain about that!

And a bonus for my Disney with disabilities friends.. and anyone else curious:
Blue Bayou and allergies: when the reservation was made, my allergies had been indicated (thank you for that!) and that was the first thing our server asked about. She said she was going to have the chef come out and help with my order. He was at another table, so she took everyone else's order while we waited. The chef was great in offering my allergy conflicts to what I wanted to order, then giving me the alternatives, and taking charge of my plate to avoid as much cross contamination as possible... he even brought my plate out himself!

Rain Forest Cafe and allergies: While ordering, I had told the server that one thing I didn't want was because of an allergy and the other I just didn't like. The chef came out to discuss it with me, then also took charge of my plate. He brought it out with much flair and jokingly proclaimed he put extra of the things I didn't want.

Wheelchair and DAS: City Hall seems to be in a flux on policies. When we got there, they didn't have a Cast Member at the door at the top of the ramp... instead, my friend was told to stand in line for me. However, another Cast Member had mercy on me and called me up a couple minutes later because she figured I simply needed to update my DAS (as an annual pass holder, my card is good for 6 months. I just need to update it rather than going through the process of entering my information again.. they just scan it and reprint with the new dates). A phone conversation with Guest Services today reassured me that they're working on the policies in City Hall as to how guests that need the ramp fall in line.
An update that happened was they added more DAS kiosks since I was there in March. There are now 4 in Disneyland and 3 in California Adventure, rather than the 2 each before. They were also placed better than the previous ones, easier to get to.

Team Tsunami

Back at the end of 2012, I decided to get my own wheelchair to help when I would be on my feet for too long. At the time, I could still walk (usually with a cane), just not for long... I now use crutches when I'm not in the chair. In my search for a chair, I found that usually they're fitted after an accident and/or during rehab. I hadn't been in an accident and I was beyond rehab.. I was simply the victim of a "medical fluke" that caused degeneration in one leg. Fortunately, I had a friend that was happy to talk to me and give his recommendations, and I found a wheelchair store that had the chair I decided I wanted. Next was getting myself a racing chair. I found a local community center that had one I could borrow and my friends led the charge in fundraising for me to be able to pay for my own... I call them my sponsors in regards to my chair: Tsunami

After two years of medical bills (and still no diagnosis or talk of treatment), then losing my brother and my job within 3 months, and now finding myself on unemployment and Medi-Cal I can barely keep my head above water, much less get the uncovered medical equipment I need (currently dreaming of better crutches so I can walk more) or be able sign up for and go to races with my pretty blue chair.

I would like to say that going to races is completely altruistic in trying to get more awareness for wheelchair sports and being able to more readily convince anyone that they can get out there as well.... but it also feels great to be able to still be out there. Training is great, but nothing beats the feeling of the start line, the athletes, the spectators, the volunteers, and hearing your name announced as you cross the finish line.

I have had Tsunami for about 9 months now, her first races were the Dopey Challenge in DisneyWorld... after only knowing each other a month, we managed to make it through a 5K, 10K, Half Marathon, and my very first Marathon in four days of running. Tsunami and I immediately became a team... we even have matching scars from a fall during the marathon. And so I started a t-shirt fundraiser through Teespring and Team Tsunami was born. If I can get at least 50 people to reserve a Team Tsunami shirt, tank top, or hoodie, they'll print the lot and send me the profits, which will go towards the previously mentioned crutches and races. There are performance shirts and t-shirts (unisex and women's), tank tops, hoodies, and a long sleeve in either royal blue or gray/white... and they all have my Tsunami logo!


During all my searches for a wheelchair, races I could participate in, good and bad experiences with race directors, and learning how to continue hiking on the trails that I love, I had decided to start a website with this information all in one place. That had been put on the back burner because of work and other commitments.. and being unable to decide on a name. With this fundraising effort, that desire has come back full force. It will be called Team Tsunami, with the tagline "Be a force to be reckoned with." My goal is encouragement and awareness for all athletes (wether you consider yourself one or not, we are ALL athletes!). I have been called an inspiration many times because I decided to find a way to keep going rather than become a spectator. While I don't like to be called an inspiration, it does make me proud that I may have convinced someone else to try something they didn't think they could do, just by showing up... most importantly with a smile on my face.

Please join Team Tsunami in being that encouragement as well. If you would like to get a shirt, please visit (this fundraiser ends on September 24th); http://teespring.com/teamtsunamikk_copy_1

Thank you!!