Being Healthy

 I've been talking about being healthy and weight and exercise a lot lately.. and I'm using my long forgotten blog to write this because I feel like it's going to get wordy.

Unfortunately there's no medical trail for the 60lbs I put on a couple years ago, so I've talked to several of my doctors, my trainer, my coaches, my friend who is a dietician, and my friend that has been on a similar journey with different complications. While there still aren't any direct answers, I have realized I'm finally making some progress. And two conversations recently are making me put my coach hat on...

One was in a gastroparesis group on Facebook; a woman was saying she realized her prescribed meds are making her worse due to the side effects and encouraged everyone to go as natural as possible. While I stand by natural remedies, I encourage anyone to use what works for them.. in my case, a combination of natural and prescription. She blames the doctors for just throwing meds at everyone, but I countered saying I asked and my doctor did talk about side effects with me, then gave me some natural suggestions to start with when I refused the meds (I fully understand I got lucky and not all doctors will do this). I've continued researching for myself and figuring out what works best for me which has changed multiple times over the years. However, I also commented that natural remedies take time as they're trying to help your body work correctly, so there's a different adjustment period for everyone... and so many people turn to meds instead for instant relief (understandably), but then have to counter the side effects and it becomes a vicious circle.

The other was with my trainer.. he has to do a check up each month now and one of the goal questions was about weight. I said I currently want to lose weight, talked about the 60lbs, then needed to make a time goal. I shrugged my shoulders and said, "I dunno, that should take 6 months to a year, right?" He looked at me a bit surprised and I told him to put down whatever the healthy timeline is (he put a year).

The conversation with my trainer has stuck with me (and amplified by the other conversation) because so many want the easy solution, the magic diet, or think just walking into a gym makes them healthy... especially with the New Year's resolution crowd about to join us at the gym. I'm just going to say it, there is no easy solution, every magic pill has its downfall. You have to be ready to work, to be disappointed (multiple times), and to keep trying. As my neurologist said at my last appointment, I get to take credit for my progress because, while it has been a team effort, I came in ready to do the work, to make the changes, to try different theories... and even come up with my own.

I absolutely cannot say that the path I've taken will have the same effects for someone else (which is why I'm not sharing specifics, but I'm happy to help with suggestions), but I will say you have to make goals and put in the work, take control of whatever you can, and be ready to take the hits sometimes in order to get where you want to be. Don't accept all the people that say you can't do something because you're sick or disabled or too young/old or too short/tall or whatever other excuses there are. And conversely, never let anyone think they know more about your own body than you do; fight doctors, and "well meaning" family and friends, and especially the voices in your head from all the "you can't" people.

You can do this, I believe in you.

Just Be

 We all evolve and change. We learn something new with each step we take and each person we meet... from fleeting moments to lifelong memories. It's inevitable.

Ten years ago, in a moment of kicking and screaming change, I requested an inspiring words list from my friends (that one is at the bottom of the page). Last month, I did it again. I realized I was resisting yet another change of this year... and I still kind of am. However, I just looked at that list again and I'm actually pretty proud of how my friends see me. And it helps.

Ending this year, I find myself starting over again. And it's fucking frustrating. Again. I'm learning a new diagnosis and how to control it.. and how I react to it. While I temporarily made progress with walking, I'm back in my wheelchair with a leg that doesn't work; on top of rebuilding the muscle I lost while getting that new diagnosis and the subsequent recovery. My stomach keeps shutting off. Migraines are stupid. Aaaaand all of that is wreaking havoc on my mental and emotional health.

Fortunately, my stubborn and determined is strong, and currently getting stronger. My rebellion and defiance might be sneaking out as well, it happens when my limits feel too crushing. Or I get too many of those "feel sorry" stares. Or too many things change at once and I can't keep up. Or my frustrations affect others. Or I'm just tired of all the bullshit. Right now, it's all of it.

And so once again I have to take a moment to simply sit down and let the waves wash over me, let go of everything so that I can find myself in the chaos. What parts of me survived the seizures, how to heal enough to get walking again, to regain the energy I need to rise again and fight, to be emotionally ready to ask for and accept help (I currently need and appreciate and love the help I have, but it's also hard because it is needed). Most of all, taking the time to learn my new brand of chaos makes it easier to just be.

Medical Hijinx

 Medical Hijinx. I coined this phrase several years ago to signal some kind of medical rant as I fought for diagnosis and/or treatment. I haven't had to use it in a while. Today, I'll be using it for its original purpose and for one I never thought I'd have to.

Last year, I finally got an official diagnosis of Functional Neurological Disorder. It came as my body was deteriorating further, and right before the leg spasms turned into dystonia. My new neurologist quickly became unresponsive, leading to two ER visits to try to help my leg. It got worse again in December, so did my neurologist's response time. As I slowly accepted that my left side is now riddled with spasms and muscle weakness, I had a couple orthopedic appointments in the hopes they could help or at least back me up. I only got their support in telling my neurologist to get her shit together or refer me to someone else. I have long preached changing doctors if you feel your current one isn't taking care of you. This was my final paragraph to her; I am sorry you're going through some personal things and the holidays have made things crazy, but if you can't take care of me or don't have time to respond, I have to request you refer me to someone else. It is way too frustrating to be deteriorating like this despite taking care of myself, working out, and having treatment just out of my reach. Thankfully, she agreed with me and is referring me to one of her colleagues.

Now for the thing I didn't expect I would need to rant about.

I was recently admonished for not sharing everything I'm going through on social media, leaving others to *gasp!* ask me themselves. And I just want to say you're damn right I don't share everything, I never have. I simply share more than others in order to get some subjects out in the open because I hate the phrase "we don't talk about that." (mental illness, chronic illness, chronic pain, sensory and learning disorders, disability....)

This goes to a narrative the disabled community is currently bringing to light; our medical history is none of your business. I can't tell you how many strangers ask me probing questions about why I use a wheelchair.. I've taken to answering them the same way I answer curious children: my legs don't work very well.

And while I have your attention, I've accepted that I'm going to be an inspiration, but you better damn well do something with it; don't tell people about me and not have your own accomplishment to share, I don't care how small it is. Get out of bed a few minutes earlier, do a lap around your living room during a commercial break, replace an unhealthy snack with a healthy one, pick up a weight once or twice, sit outside for a few minutes. That's where I started and currently where I am again. Use those small victories to build some bigger ones.

Slow progress is still progress

 

"No offense, but you look like an athlete." This was said to me years ago, after a pause to take a quick glance at my wheelchair. My answer was "I AM an athlete." And proceeded to show them photos of the various adaptive sports I had tried so far. Admittedly, this wasn't long after I'd started using my wheelchair regularly, so I still had the "runner" physique. Now I have the "hauling over 200lbs around and playing various sports with just my upper body" physique.

This is my best illustration of how much my upper body grew in just the first 3 years!

This is what I think of whenever someone asks me how I can be an athlete with several chronic illnesses (especially the various forms of dysautonomia), a neurological disorder, and a wheelchair. None of those things preclude me from sports. In fact, some of them made me more likely to be able to participate. I recently went to the Angel City Games and was talking about I had always wanted to do a triathlon, but didn't do it until I was using a wheelchair... simply because I had more support as a wheelchair athlete than I did as an athlete with a bad leg.

Soooo, back to the photo at the top. Most of the people posting on social media about chronic illness and dysautonomia and disorders and wheelchairs have fallen victim to doctors going straight to all the things they can't do instead of all the things they can do or the things they can improve or the things they can adapt. They're generally surprised when I come in say that I essentially accepted that I had to entirely start over and work my way back into being active. It took me 3 years. And last year, I had to start again.. not entirely from the beginning, but it was a huge blow. It's not done yet as my doctor and/or insurance are dragging their heels on treatment. 

When I first started over, it was a win if I simply stood for an extra minute, or took an extra step, or sat up a couple extra seconds. When I started rowing, I couldn't sit up on my own because I couldn't lean back or to the left; three years later, my core was really strong, unfortunately it was taken away again last year. I'm working on it again. Society tells us we should make big, noticeable gains when we work out and that's just not true. It takes time (and some fancy lighting sometimes ;) ) to get those before and after shots.

Also, like I said, slow progress is better than no progress. Be proud every little bit of improvement you manage to earn.

Don't Give Me Time

 Don't give me time to realize I don't need you. You won't win me back.

Years ago, as I was mourning the initial loss of leg function, then my brother, then essentially my world imploding, I lost a lot of people. At first I grasped onto them as I just couldn't lose anymore, but I was losing my footing in the storm. And then I just stopped fighting because I realized I was in the wrong battle.. I was fighting for others instead of myself. And in losing so much within 2 two years, I learned that the most important thing I had to hold onto was myself.

So I simply sat down and let the flood wash over me. I let everyone go. Some ran as fast as they could in the other direction, some quietly walked away. But the strongest of them stood at the edges and helped calm the flood; they were the ones that were there with a hand to help me up when I felt strong enough to fight again. They were the ones that cheered for me when I stood on my own, when I started over rather than try to rebuild what was. In coming years, as I saw some that left, blame was placed on me... why didn't I reach out when I was okay again? The answer was simple; I realized I didn't need you.

That lesson became essential. I used to chase after relationships, became upset when they weren't what I wanted or needed. Now, I realize it is what it is... we're guests in each other's lives and provide or receive something in particular with each relationship. It may or may not be equal, the benefits may be found years later, but we all serve a role.

I'm in that place again as I lose more function. People are walking away. Instead of grasping, I'm learning to fill the void they leave. What role did they play? How did they make things better and how can I do that for myself? What tools or lessons did they leave me? Or did they even make things better? Am I better off without them? Or somewhere in the middle.. do I need them as much as I think I do?

Now, I'm not saying constant contact is crucial (please don't!), but don't be surprised that we've both changed and the relationship is different. That's actually a sign of a healthy relationship... we're supposed to change and evolve. We're supposed to support each other in that, not hold each other back.

Forward Motion

A year ago, right after the Bay Area went on lockdown for "2 weeks", my stubborn came out strong and I decided to work on my walking. Pain management had gotten me to the point of walking to the bathroom by myself, but I'd get dizzy just walking across my bedroom. And I knew I couldn't progress like that.

One day, I just walked out of the house with my walker and headed to the corner. It was less than half a mile and I had to sit down a few times. That same distance went a little better a week later and I slowly progressed after that. My dad started to walk with me and that made me brave enough to go around the block, then two blocks. When I made it to a mile, I switched to my cane, but then my progress stopped. I watched how I was walking one day and realized while I was concentrating on keeping my foot from dragging, the rest of my leg was a problem.... my knee was overextending, my quads weren't helping, and my hip had gone back to swinging out instead of forward. Simply put, my control over my leg was worse than it's ever been. I got a big leg brace and put my AFO back on and progress returned.

In November, I made it to 2 miles, 2.5 miles in January. Today, while my car was getting serviced, I had time to try for a 5K. It wasn't pretty, but I made it back to my car in about the same amount of time that my fastest 10K took back when I was able to run. But I did iiiiiiit!!

My leg isn't any stronger, it's just more tolerant... and I have learned I can still just keep going, but I get dizzy of I stop. As always, forward motion is my advantage.

Representation Matters

 On this International Wheelchair Day, I'd like to share my past weekend with you. On Sunday, I helped coach an adaptive rowing introduction for those with spinal cord injury at Bair Island Aquatic Center, where I am a part of the adaptive program as an athlete, outreach, and coach. I was the only coach that uses a wheelchair. Two weeks ago, when I went to USRowing's coach training, I was the first coach that uses a wheelchair to participate in the training (definitely their current virtual training, I'm not sure about in person).

The other coaches and the volunteers found it interesting that I knew most of the participants at our event. While I did directly invite some of my friends and past teammates, I knew so many people simply because the adaptive sports community is rather small, especially women. I've had mostly male coaches, teammates/peers, and mentors. I've had one female coach, a few female mentors, and more teammates/peers mostly because I sought them out and some groups have formed, but the number is still low. 

Due to Covid, we had the event set up for 3 people at a time for each hour. After showing each group the boat and introducing them to the coaches, I assigned them to a coach and they were introduced to the erg (rowing machine) as this was an introduction to get people with spinal cord injury into rowing for exercise, recreation, or competition. And everything starts on land; with adaptive rowers having the added need to figure out seating and transferring.

I was assigned to roam.. pretty much so I could talk to everyone. Plus I'm still working on mentor hours for that coach training ;) I'm happy to say everyone had a great time. More importantly, everyone learned something and everyone taught something. 

Afterwards, I was talking to my coach about the event and she pointed out that it was SO important/amazing that I was there as a coach. She wasn't one of the first female rowers, but she knew those ladies.. and it was years before there were female coaches and refs; even now and in every sport, adaptive and able-bodied, it's rare to have a female coach or see a female official (I pointed out the Super Bowl announcers talking about the first female ref every time the camera was on her). We're doing a bit of the same in adaptive rowing right now. The USRowing coach training had a whole section on inclusion and diversity, and I ended up talking/teaching more than I intended just because I could give first hand experience.

Representation matters. There's a moment of joy when you see a coach that looks like you, and I was happy to provide that moment on Sunday, to have some suggestions or answers the other coaches may    not have had. I definitely prefer learning an adaptive sport from an adaptive coach, or at least knowing there's someone around to answer some questions that only another adaptive athlete can answer (luckily, I knew a couple awesome ladies in rowing before I got started). For the same reasons, I prefer learning from female coaches (the one I have is my favoriiiite!), or at least having female teammates. I know this doesn't seem like a big deal to a lot of people, but representation matters.