Why?

Why do you (run, row, ride, insert activity here) if it hurts?

I've heard various versions of that question since I started training for my first half marathon back in 2005. My knee was a problem from the beginning, but also the reason I had signed up in the first place. I continued because I was part of something bigger... fundraising for the American Heart Association, volunteering, and simply being an advocate for pushing past your limits. More importantly, I did it because I could. I spent so much time not participating because I was told I couldn't do it, I was encouraged to sit out, and I still ended up with a second surgery.

Cue rebellion.

So when the cane, crutches, and wheelchair joined my daily life, that rebellion grew. Society sees mobility aids and immediately says you can't. And so for the last six years, I have tried everything, every sport, that has been presented to me. I won't sit on the sidelines anymore because I want to play. I want the stories. And I'm still part of something bigger than myself. Still an advocate for pushing past your limits, I am now one of the many faces that represent adaptive athletes. And that's my why.

Recently, a new question was added in: Why don't you stop? What would happen if you just stopped?

Complete and total breakdown, physically and mentally. Depression/anxiety would take over, my tendons would get tighter, my shoulder would get worse to the point of not working, my stomach would be a complete mess, I'd lose the strength that I fight to hold onto every day. That list is just what I know for sure, I'm afraid of what else could be lurking in the background.

Activity simply keeps me healthy. Yes, it hurts, but the hurt is a lot less than what it could be.. plus it's the kind of hurt that I've earned rather than feeling like I got hit by a truck just because I opened my eyes.

photo credit to my awesome coach!

Benefits of Rowing

Last weekend, I participated in my first rowing race. I was surrounded by my coach, a team of rowers from BIAC, and virtual cheers from friends. And I was terrified. Everyone else was so relaxed, it helped me calm down... I hadn't really met any of these people, but they pulled me right in like I had always been there.

Even on the water, I was nervous, but my fellow competitor reassured me that we were going to have some fun! My strengths came out by way of getting into the race, fighting past a rough start, making my body work for me, and sprinting into the finish. My weaknesses came out in my troubled breathing and my inability to fight the current pushing us to the left. It was a great race, and I won a hard fought battle for second place. Yes, there were only two of us, but I'm still damn proud of what I accomplished in my first race!

Later, a new friend made in the beer garden asked me what physical benefits I've gotten through rowing. And I had to think about it. I mean, I know in the last nine months I've gotten stronger and I know my leg has been working a little better, but I had never put the pieces together.

When I met my coach back in October, I was still struggling to regain my strength and endurance from finally recovering from my appendectomy the year before. I was also having a hell of a time sitting up on my own, especially during sports; the adaptive sports I play mostly involve wheelchairs with back support and all motions are forward.... and in sitting volleyball, I fell constantly because I couldn't keep myself upright when leaning back. With rowing, I move backwards and I had denied the back support, we're also working on my balance. So my core is stronger, my abs and lower back are doing the work they're supposed to do rather than giving up. My upper back and shoulders now match my chest in strength, and even though my left arm has some obvious deficits, I'm learning how to make it work with its stronger companion.

Today, I started physical therapy again with the same therapist I had last year. She started with asking me how everything is doing and how my exercises are going. I very proudly showed her how much I can lift my leg and shared how my exercises have advanced. And in hearing all that, she asked how the pain has evolved, how the disconnect has changed (for a while, I was convinced there was some disconnect because the lack of control in my leg). Again, something I hadn't thought about until she asked, but I realized the pain is much more localized and doesn't shoot nearly as much anymore. As for the disconnect, I feel like I'm working more as a whole now rather than piece by piece.. which is actually pretty awesome since I was taught how to row piece by piece in order to make everything work together. Who knew I just needed to be retaught how to work?

Frustration

I finally received a diagnosis. It wasn't the answers I was promised.. it seems to be simply a directive. I "very clearly" have PoTS, I also have Inappropriate Sinus Tachycardia, a possible inner ear imbalance, and there's a concern with my hyper mobile joints. I'm dysautonomic; basically all the things that are supposed to work on their own, do not work right, the prime symptom is getting dizzy when I stand up or stand too long.

I'm chaos. Seems appropriate.

I've been living with this for a couple weeks. Ignoring it, really. My body finally forced me to acknowledge everything.. the diagnosis, the upset, and mostly, the frustration of so many years wasted on doctors not putting the pieces together. We'll never know how long I've actually been dysautonomic, just like we'll never know which defect in my leg caused the other defects or if they were just always there. The frustration stands...

I still remember clearly, finally getting the courage at 17 to tell my doctor I was tired all. the. time. He very matter of factly asked if I was depressed, not realizing I didn't actually know what depression was at the time, I said no. He quickly wrote me off with "everyone gets tired". I didn't bring it up again. I worried about dizziness when I was 20; I was told to eat better and handed a prescription for vertigo that never helped. At 16, I was diagnosed with asthma because of trouble breathing (especially during sports) and a family history made it an automatic diagnosis. The inhaler only helped during sports and I quickly escalated to three inhalers and moved higher on the asthma spectrum; my low use of the inhalers didn't make sense, so I made up ones that did... when I finally announced I didn't think I had asthma or at least not beyond sports asthma, I was reprimanded. Despite not using an inhaler in over 5 years, my doctors now are still afraid to agree with me. I spent 5 years going through GI doctors like tissue paper; I felt like an experiment with most of them because they ended up focusing on one symptom (the weight loss, my periods, acid reflux...) and medicate the hell out of it, then blame me for the medication not working. Eventually, I was handed IBS with no treatment and freed from more visits; I eventually discovered my food allergies on my own. At 25, I complained of what I still believe are tension headaches, and was diagnosed with migraines and loaded down with prescriptions; the prescriptions didn't help and I was ignored when I said painting helped stop a headache. I didn't bring up headaches again.

That's my medical history; bringing up my concerns and either being written off or medicated, and it was always my fault or just in my head when the medications didn't work.

I'll be honest, yeeeeears of vindication settled on me as the doctor proclaimed "very clearly" it wasn't just all in my head.

And then regret fell on me, just like when I finally got my first diagnosis and surgery on my knee. How different would things have been if I had gotten a diagnosis before all the damage had been done? Where would I be now? I know we can't go back and I don't think I would even if I had the opportunity, but it's a hard thing to live with.

Last Sunday, I spent too much time in the sun and didn't get enough fluids; the next day, I was too dizzy to even stand, and it's taken me all week to recover. Yesterday, I finally realized it was a harsh look into how important it is for me to take care of myself at all times. No slipping. I'm not just listening to my body anymore, I'm also dictating what I know it needs, and I have to do it right. I refuse to slow down and I want to spend days in the sun, so I'm learning how to do that and not make myself sick. It's a hell of a learning curve, but I'll get there. In the meantime, I accept that I'll make mistakes along the way and I'll embrace needing to take a day off sometimes... so I don't have to take off a whole week ;)

I Am Enough

I have recently run into some old friends... it's an interesting thing because I realized I have two kinds of old friends at this point; those I simply lost touch with and loved to see again, and those that stepped away when I needed them the most and have no desire to see them again.

I saw a friend I lost touch with and we picked up recounting the things we've missed in each other's lives, discovering our paths have brought us both to a more active lifestyle. It was fun to show each other pictures and talk about the things we've been doing and how we've grown. We had lost touch before I went into the wheelchair, so I explained that along with the things I've been doing; she focused on my smile and my accomplishments, congratulated me on the things I've done. Proud that I pushed forward.

And then there was a friend that quietly walked away as I dealt with so much loss, claiming I wasn't the same person or everything I was going through was too much for them. There was no catching up, there were no pictures. There was a question; how did we lose touch and why didn't you call? The question was aimed at me and felt like an accusation. How? Quite honestly, you walked away when I had no fight left and probably didn't even notice. When I did notice, I wasn't quite me yet. And why? I didn't call because by the time I was me again I decided I didn't need you. You left me to fight my demons on my own, and now that they're "gone", you don't deserve to know the person I've become.

I keep this picture in my phone to remind myself how far I have come, both mentally and physically. The 2014 picture was taken about a year after I started using a wheelchair, the 2017 picture was taken  about a year after I finally took some control over what I was doing. I went from skinny arms and no chest to becoming quite muscular. From being happy to just keep moving to moving with a purpose. From one sport and drowning in it to discovering so many sports, making new friends, and finding what I truly love doing. Most importantly, I went from tagging along behind everyone's suggestions and pushes to carving my own path. Unapologetically. And triumphantly.

You see, my demons will never be entirely gone. I will have bouts of depression, doubt, and anxiety. I will miss using my legs. I will let grief wash over me, or succumb to it at unexpected times. I will throw tantrums about my medical world and wish I could just take a break.

I'm also going to share my triumphs and encourage others in theirs. I will do my best to keep a smile and a hug on hand for those who need it. I will be proud of myself in my improvements and happy to share them.

Those that are still in my little world are those that are ready to handle both, and should expect the same from me. Those that avoid the bad and just come in for the good are not welcome. And that may be my biggest change yet... realizing that I am enough. I am worthy of sharing all of me, not just what I think others want to see.

Powerlifting and Inspiration

Yesterday, I participated in my very first powerlifting competition... and I was called an inspiration quite a few times. For once, I didn't mind it. Let me explain why..

At most sports events, as soon as I show up or simply start, I'm called an inspiration and I just want to throw a tantrum at that point. I want to tell them they should wait until I finish, wait until I've done something other than prove I chose to keep pushing rather than lay in bed and wait to die because that seems to be what most people think they would do if they were to put in my situation. Seriously, I should start charging a dollar every time someone tells me something along the lines of "I don't know what I would do if I had to use a wheelchair." You'd use the damn wheelchair! You'd figure out how to make shit work! Now give me a dollar.

But I digress...

At the competition, everyone was very nice, but I was mostly left to my own devices. I think I was the only one that came on my own (except for knowing a couple of the judges!), so they stayed to their groups, and I stayed at the edges simply observing. When it finally got to the bench and I needed to warm up, a couple of them offered help if I needed it, started talking to me a bit more as my weights went up, and one really liked Saber's spokes. The real change came when I then warmed up for the deadlift.

The woman on the left told me I had just shocked the hell out of her when she looked over and saw me standing with the bar. She told me it was awesome. She told me I was an inspiration. She told me that's not something she says much because it took her a long time to accept it, herself... she's now got Inspire tattooed on her wrist. I told her that I don't usually accept it because it's usually said to me at first impression, but because she said it after watching me all day and seeing me do something that no one expected, it meant a lot to me.

After my first round with the deadlift, one of the guys that had offered help earlier also told me I was an inspiration. He told me that he regularly helps a friend that uses a wheelchair and he had watched with his jaw dropped when I headed up for the deadlift. He asked why I use the wheelchair, what I do to train, and what kind of strength I had. He's been training with his friend to help with his transfers and he was so proud of how hard he works to get as far as he's gotten. Even with my differences, he said it's obvious that I work hard and he was proud of me as well. He also teased me that next time I should "put some weight on that bar!"

So I started the day off kind of on the outside, but by the end of the day I had everyone cheering for me and asking which competition I would be at next.. and I taught them all a little something about assuming what I can and cannot do.

Bench 40kg; Deadlift 85kg; for a total of 125kg and a gold medal!

Everything I do is hard..

Everything I do is hard. Waking up, getting out of bed, leaving the house, going to work, the sports I participate in, and the art I create... and everything in between. And that's why, more often than not, you'll find me with a smile on my face. Everything I do is a great accomplishment.

All those simple things I used to take for granted is now like getting to the top of the mountain. That's not to say I'm going to wave a flag every time I stand up, but I am going to let those small victories make my day a little brighter. There are other moments that I may need to remember that I can do it. I live in a world of ups and downs. Of wondering if I'm good enough. Of thinking I shouldn't be pushing so hard, or trying something new. Of knowing how awesome it is to do the things I "shouldn't".

I grew up wanting to do the things the boys did and I was good at it. Whenever I did something well (or better), my brother excused it away; I got lucky, or the wind helped me, or the sun was in his eyes. It pushed me to get better and stronger to prove I could do it. So when I got into baseball, I could throw farther than the boys, and everything I did wrong was brought up over and over. This continued all through school. I also grew up in a family of critics, the kind of people that take anything good and ask why you didn't do better. Also, a family focused on results rather than the journey; a couple recent conversations informed me that I am, in fact, competitive; what I thought was competitive is actually being a poor sport. The difference is, my competitiveness is not why I participate.. I participate because I enjoy the journey, the challenge, learning and improving. In other words, I don't play to win, I play with a goal of winning.

The criticisms perpetuated my anxiety. And it has continued into my world of adaptive sports. Everyone that's shocked that I play sports. How some focus on my lower scores in archery as I learn something new or my lower speeds as my body changes. The lack of support because I'm doing something different or not what's expected or understood. These things hold me back, they make what I do harder than it needs to be.

A month ago, I participated in my first indoor rowing championship. And won! My dad teased me the rest of the day... "don't the boats hit the walls?" and naming every body of water in the area we could have used. It finally stopped when I simply told him that I had it on good authority that the machines don't float. Yesterday, it all came back as I had the audacity to dress for the weather so I could get some training out on the water this week. I had to explain the event (again) and defend why I was ready to possibly row in the rain. I got mad as I drove to training, my head wasn't in the right place, I got a bit more frustrated than I should have while adjusting to a new boat, and let the pain get to me more than usual. This is my life, explaining and defending. I don't mind the explaining and encourage questions, but I hate defending the decisions I've made for myself.

My relief in all this is my stubbornness to do what's best for me, to do the things I love wether or not the people I love understand why. And the breaks, my solace, come from those that support me and cheer me on no matter what; my coaches that have no doubt I'll keep pushing and believe that I'll reach whatever goals we've set; my fellow athletes that are happy to help me along and/or tell me how awesome I'm doing.

Who's running this circus?!

Soooo... this is a long overdue update, just maybe a bit more entertaining, I hope.

My primary doctor often feels bad that she can't do more (she says I’m above her pay grade ;) ) as we meet up every 3 months to go over what the other doctors have said/ordered, and she answers the more mundane questions (like.. why won't this bruise heal?! *I take Vitamin C now, we'll see what happens). Today, I told her it helps me knowing that someone is holding all the information.... then proclaimed her the Ringleader of this circus! Not sure how much she appreciated that, but I kind of like this theme....

Orthopedic: the self-proclaimed construction worker. He's broken up with me, but is on hand if I or someone else finds something for him to fix or rebuild. In the end, he confirmed the damage and defects from the past surgeries and general wear and tear, but none of that should have put me into the wheelchair. He's upset that he wasn't able to put the puzzle together.. even with his counterparts, the Lumbar Guy and the Injection Guy.

Rheumatology: the very temporary (almost seasonal) act. I'm borderline on some lab tests, so every now and then I see rheumatology again. The latest one wrote off my lab results pretty quick, not a fan of the borderline theories, but also said I was borderline on hyper-extended joints.. elbows and knees, not wrists/hands or ankles. Still, she said she wouldn't be of any help.

Gastroenterology: another temporary act. No ulcers! But maybe my stomach produces too much acid.. she gave me a couple prescriptions to try; one didn't do anything, the other one works too well. My primary is good with me using it as needed while I recover from a horrible recent prescription experiment (more on that in the psychiatry block). We need to see how my stomach is actually doing before deciding anything else.

Psychiatry: the act that took a horrifying turn. After knowing me for 45 minutes (for more details on this, you can read Witch Hunt here), she decided I was "very sad" and needed to be medicated and in therapy. Said medication basically made me miserable for two weeks; no sleep, no appetite, twitching... all escalating to chest pain and trouble breathing, and landing me in the ER. A week later, I'm still recovering from the side effects and from stopping the medication.
  Bonus: this horrible act is bringing back an old favorite, my Therapist. Don't know for how long, my primary left all of this up to me and I'm choosing to stay on her list.. I figure with all that's been happening, it never hurts to talk. Especially to an impartial observer.

Neurologist: the hot, new act... can't decide between juggler or lion tamer.. hell, she might be juggling lions at this point. After going over my medical history, doing all of her tests (neurological and an EMG), and loads of blood tests, she decided my diagnosis is going to be a combination of pretty much everything above and she was basically looking for the first domino. Something I said at my last appointment got her very excited and threw in two more lions, Cardiology and Autonomic. My primary set up the Cardiology referral today and both are trying to figure out how to send me to Stanford for the autonomic work-up.
  From what I've read, if I am disautonomic, it likely complicated the problems with my leg and created the perfect storm.... but it also explains pretty much everything: the stomach problems, the dizziness, the "asthma", the depression, the headaches, the dry mouth, the muscle weakness, the fatigue, and my newest tricks, the sweating and increased heart rate.

Aaaaaand because they always deserve a mention, The Nurses! In this metaphor, they are the backbone of every circus, the clowns; performing death defying stunts while keeping my spirits up and reassuring me something great is about to happen.