Tuesday, January 23, 2018


Physiotherapy (PT) has its methods. It takes time and commitment. It takes energy and resources. It's for a better overall sense of being. In that sense it is just like karate-do, another way of being. It's hard to walk both paths at once because my energy is limited, so I've been foregoing karate in order to repair my body at PT with that much more focus and efficacy. When I pushed myself to do both I felt like I was working against myself because I was too sore and exhausted, and I was getting weaker from doing too much. (I do not enjoy admitting this.)

After physiotherapy today I had to sit in the parking lot to collect my emotions. My physical therapist is so knowledgeable, so humble, and so unafraid to try to help, that I get overwhelmed by finally having a place to go where I can get relief. (I get even a little more overwhelmed to think of how few EDSers get this far.)

Thanks to my PT's help, I take less medicine for pain. I am getting through more of a day without needing a major rest period. I'm not throwing up every five minutes. I'm passing out less often, and less severely. I'm able to hold my own head up without a brace more often.

Regular access to competent physiotherapy is helping me get ahead of my pain. He not only helps me understand what's happening, but he challenges me to think through why it is happening. Then, he gives me options for what to do about it, and I am 100% included in my own care plan.

My PT meets me where I am in managing my symptoms. By that, I mean that he genuinely listens to my confusion and frustration, which gives me space to work through the emotions that need care on the way back to logic. It's a holistic approach, invaluable to a "PT lifer" like me.

I look forward to physiotherapy because it's where I go to get better. Today I was anxious because I knew I was going to be able to make it, but I didn't know how much I was going to be able to do since I had been dealing with POTS all morning. I had a "painsplosion" last night, too, which was not helpful. What I did know was that I would be okay, and that I would be in less pain after. I would not be judged as weak and I would not be ridiculed for using dramatic terms to describe my pain because it's so complex a feeling to convey. I knew there would be things to laugh about and that I would have some serious work to sink my teeth into. 

I like working with my PT because he is a natural teacher like I am. He lifts up everyone around him because he is constantly educating. Patient education is essential to long-term results. I leave with lots of ideas to look up each week. I wish I could stay and take more notes during or after sessions, but I really need to focus on my body so I can get back to karate. That means I don't get to spend as much time in my head as I'd like, to process it all. With hearing loss it takes extra time to commit verbal exchanges to memory.

Physiotherapy has been a long road for the last several months. It's taken effort, tears, trust, time, and patience. Not once have I left there feeling like I haven't raised the bar; I am always a little better off than I was when I went in, regardless of where I was when we began our work.

Because I'm able to get this care, in able to stay employed. I'm able to earn a living wage, pay my bills, contribute to the economy, and even make a few modest donations here and there. Ehlers-Danlos Syndrome costs a fortune to manage, even with Employed Individuals with Disabilities Medicaid buy-in to cover my insurance copays. A significant portion of my wages goes into my care. But at least I'm getting adequate care now, which is especially true with having found a qualified and competent provider.

Last year was a rough year for my health. This year I'm going to keep working on improving myself. I will work to remember that I can only do one thing at a time, and I will try not to work against myself.

I'm so grateful that the trend is upward that my eyes are leaking. You could fill a city with the number of people who are a part of my progress. If we could measure compassion in raindrops I'd need an ark!

The foci of our work this time around in PT has been on shoulder stabilization, stabilizing and integrating the paraspinals, improving vestibular resilience, resisting syncope and recovering sooner, and a few other odds and ends.

I am so eager to get back to karate, I must think about it at least 20 hours a day. But I don't want to overdo it and end up injured again because I'm working hard on PT to come back from a really harsh year. Every day that I don't go to karate I have to resist kicking myself. But I'm trying to be patient with myself because I still study and I still practice at home, which has value. My dojo always welcomes me to try everything I think I can do. But I think I'm doing the right thing to let myself recover. It's so hard to not go.

I'm so very grateful. How I wish I could give this experience to others who desperately need better care and better results. Maybe by writing it up, others will know what to expect, and they will know to aim for a higher level of care.

Be well.

Thursday, January 11, 2018

Go Back and Do it Right

I was wrong and I've learned. We can't fix everything we break, but we can almost always take steps to set things right. Trying is always the right thing to do.

A few days ago I vented my frustration on social media:
"Another nurse today who had no idea what EDS was. At least she listened to me about the blood draw and didn't collapse my catheter. I missed my Physiotherapy appointment because it took too long to explain EDS to this nurse. Frustrated. Tired, too. I have to go to OT in a few minutes, but I'm exhausted. EDS Sucks."

She was one in a long line of nurses. I was frustrated because of all the trouble, and you can easily smell the stink of my depleted heart, stinking up my normally more humble attitude.

After venting to my friends, getting support from my sweetheart, reflecting on my experiences, and praying about it, I see now that because I had been worn down I did not have an "attitude of gratitude," which we practice in karate, especially with the kids.

I wish to be an example, someone good to whom they can always talk. That means I need to go back and do the right thing. My love for the children in our school runs unnaturally deep, especially because I haven't even been able to support the children's classes for a fortnight! Our children's instructor is a monument of faith, and I know they are in good hands. Sensei is always reminding the adults that our school is first and foremost dedicated to our youth. He reminds us that the most important thing we can do is set an example by constantly developing our character. (He's clearly made his point in my mind--ha!) When those kids even know who I am it puts me over the moon with joy. They're all great kids. We are a school focused on discipline, strength, and humility, and those are big words, even for adults to aspire to, so it's good to lead by example.

Back to the nurse: I did not give genuine thanks that she stayed so long, that she persisted until she got it, she was compassionate and genuinely sorry that she didn't know what to do, and she ultimately got the job done. On top of that, she heard my frustration and tried to comfort me from a kind place in her heart.

I was wrong. I value nurses so highly! I could have done better. I thanked her and told her that her job is very important, that I didn't blame her for not knowing EDS, that it wasn't her fault for being assigned to me, and that she did accomplish what she had come to do, which was very hard for me to get done. But my heart wasn't in my thanks the in way I'm accustomed to giving thanks.

Today I will contact her to tell her some shorter version of this, and to extend my thanks again, this time with an attitude of gratitude.

That's how I'll practice my karate today. God willing, I'll practice more in the dojo tonight!

Thank you for reading. If you have been a part of this EDS adventure, thank you for joining me in it.

Be well.