11/9 – GI Pain & The Astronaut
Okay, so here’s the deal. I need to figure out why, in the past 2 weeks, I’ve had a rather large increase in lower GI pain, gastric reflux, heart burn, thrown up; 3x on the boat trip and 1x the night before the boat trip, because I either ate too much or laid down too soon, I think? I also am feeling my lower left side of my abdomen getting extremely tight, making it difficult to breathe sometimes. Why is this happening? What changes are occurring? And how can I improve this situation and actually get some rest? Is it from the food I’m eating or alcohol?
It bums me out/ makes me sad that I don’t get to participate in activities and libations with other people, as well as for the fact, that I still want to participate and join in. Ugh. It’s hard. It’s really hard because I feel like I have/ had had to give up so much these days.
So I do these activities as a “break” but really it messes me up more than ever and ruins the rest of the weekend. It makes me sad because my body is such a beast of burden. Why am I not allowed to “let loose”? Is there something I can do before (or after) drinking alcohol (or even just eating food) that will help?
Well. This has been an interesting day. My body has been absolutely exhausted. He’s been squeezing and squeezing me so much, at times I can’t hardly breathe. It’s rough. These spasms and muscles waking up down low is really giving me the worst case of gastroesophageal reflux. It’s so weird. All the symptoms, Heartburn (burning sensation in the chest), Regurgitation (feeling of food or acid coming back up into the throat or mouth), Acid taste in the mouth, Nausea, Vomiting, Chronic cough, Hoarseness. Yeah, these have all been bugging me so much in these past 2-3weeks, I didn’t puke last night, but I sure was close. Other nights like this I have. it’s been miserable. this left side has been even more aggravated than ever. I just don’t understand it.
My body has to be going through some massive changes. I can just feel it. Before I got myself to nap this afternoon, while I was closing my eyes, I was envisioning myself as The Astronaut. I was all suited up, and for some reason, instead of the space shuttle, or another rocket to get into space, I just pressed through my feet, jumped up into the air, and sent myself soaring upwards into the sky. I started to pick up speed, and passed by the planets, cruised by stars, and started to soar before my own eyes. As I was traveling through the universe, in this very peculiar way, my mind was transported away from my body. Almost like my mind & spirit were taking a break away from my body. Truth be told, that sounds so extremely nice. I guess, maybe I should try to take more of these breaks?
Oh my goodness. My body needs a break and I need to stop feeling like I have a traffic jam the size of manhattan jn my stomach. It’s too much.
So honestly, I realized that yesterday I was doing a lot of things that used my legs in different ways. Sitting in the new chair, and then getting in and out of the car with just my body! Pushing through my legs! I will have to keep this up!
11/10 – Field of Deer – Midwest Weather
This has been a rough weekend. I have been having the hardest time getting any rest. Last night was a lot of trying to tame all the spasms and my left abdomen. It’s yanking me so much. It hurts. I hate it. I had this dream where my entire family was over in England, and a giant herd of deer was running at us. We were in this very large, open rolling field where we were all gathered at for this sunny afternoon party. It was weird because it appeared to be a group of 300-400 deer. So odd. And then they ran into the woods. I remember my brother John and I took my mother together to the side, and we both told her how much we love her. I remember John saying, “it’s really hard to put into words.” He stole the words right out of my mouth. I told her I would tell her I love her until I am no longer here. It’s so odd. Dreams, and where they come from. I woke up with a slightly damp tear in my eye, as I slowly got myself up. Callie said this last night, “Call your mom, it will make you feel better.” And it’s so crazy to me, because it definitely did help. And then it made me realize how much I miss her. (Sigh).
My body has been a force to be reckoned with this weekend. I’m trying, and who knows, maybe all the new positions and new activities for my legs has really gotten them trying to wake up more and more. All I can say is that the spasm in my hips are hurting way more. Because they are getting so much stronger.
I really am getting sad a lot more often. The thought of having to spend my days in this chair have me in a world of darkness and dread. That’s why I’m working every day on my body. I guess too, this weekend was light on body work and movement, so maybe it shouldn’t come as a surprise to me that I felt so down? The more I move, the happier I seem to be. Movement under my own power. I haven’t gotten on the floor in quite some time, and maybe that will help me turn things around? Getting back to my basics?
It’s crazy too, how much more I have been feeling and contracting the muscles in my legs. They are feeling more and more like some real “rocks” of a leg. A solid, foundation, if you will. I just need to continually progress their abilities in different positions, and more and more in extension. They are getting there, my right leg is doing it all without the Botox even, so what’s up with my left side? I had this thought and I chuckled, it seems like my spinal cord had a stroke because my left side has been so much more affected. Shoot even my left eye with that weird issue with my eyelid.
I better get up, and get moving. That always helps. Time to start the day.
Being from the Midwest, things aren’t as flashy, sunny, new, or as exciting sometimes as they are out West. It’s interesting. It runs deep, and the weather too, plays a role in this. Also how it shapes us. We can’t wait for perfect weather to get outside. So what does that mean? Learn to do things in the cold, rain, or snow!
Honestly I haven’t had a session that good at PT in what feels like weeks! Turns out, with the little vacation break, and all the issues with the Rewalk, it honestly has been weeks, now that I think of it. This weekend was not a good weekend for movement. I got some other things done, but it’s also hard to do other activities when I’m also moving a lot. I guess it’s a balance. I need to make time for that.
I’m really happy with how the BFR went, the Bosu Ball work, and the standing work after! Honestly, it’s always so crazy to me that slowly but surely, my body is kicking in and working more and more! I also had a realization too, about watching someone else do their work. At first, I was jealous. I wanted to be doing that, and it didn’t feel fair in that moment, is what it felt like. But, I stopped, looked away, and realized, “you know what Joe, honestly that is so great for them! They’re doing it! They’re progressing! Just because they are, doesn’t also mean you can.” And to be honest, I left it at that, and made peace with it. It’s kinda weird, there is so much space in this world for so many of us to succeed and grow. Just because someone else is doing well, doesn’t mean that we can’t too. I guess that’s always a good thing to keep in mind.
Garrett’s mom came out, and told me, “Joe! Garrett was in here running! And was hoping you were by the door to cheer him on!” This was such an amazing moment! That feller, he’s really such a gem! One day, for some reason, I saw him up in the overhead harness, and went, “Garrett! You got this! Come on!” And what do you know? He starts to pick up the pace! he starts moving like I’ve never seen him before! It was really great to see! And sometimes, that’s all we need. Hope. Just a little bit of Hope. That’s all. He really needed that, and I really don’t know where it came from? It was so surreal / so weird? I guess, seeing him working and struggling, I just wanted to see him do his best and do better! It’s really amazing, because Hope is one thing that we can give others, when we have nothing else to give.
11/11 – Heavy Bag & Sweaty Legs
Made it to the gym! I had an awful chill I wasn’t able to shake until I got here and started some cardio! I really need to see how everyone wraps their hands, it’s been fun to play around with! Every session hitting the Heavy Bag my legs are fired up and recruited so much! I even did some different bag resistance training at the end of my sets that got my legs really fired up! I’ll have to load my legs in this repeated fashion more often!
I’ve noticed something really odd, my legs seem to sweat the more dehydrated they are? Like, what is up with that? This seems to be one of the most confusing areas in my body lately? Why is this?
11/12 – “Letting Our Body Do What It’s Best At” – Hope
Wow, seriously!? The squeeze of fullness I’m feeling!? This is pretty incredible! All these smaller regions in my abs, glutes, quads, knees, shins are filling in! My entire leg is feeling quite different! I hope this understanding now of the sweaty legs and hydration allows me to get some better sleep! Since our body is in recovery mode in the night while we sleep, it probably shouldn’t come as a surprise to me that my body actually requires more water than usual at night!? I think?
So, I really like how my legs and body were feeling with the cardio I did yesterday. I am wondering how that might look / work out if I was able to do before my PT session? Or is that too much? I seem to do better the more I do. Might be a fun one to try out!
You know, Callie and I just had a really interesting conversation. I told her, and began, about how much my body is changing, especially the left side. I have been needing to adjust my leg positioning in the standing frame a bit more often than usual, and I think this has been a good find. Because, whenever I have to adjust, my feet are actually more out of position than I’m realizing, causing my whole body to be out of whack. What this causes me to do is overcompensate in some area, and not be weight bearing the same amount in my left foot. This all led me to discuss “letting our body do what it’s best at”.
You know, I got all teary eyed when I started talking about this. It led me back to PT, and thinking about how Joni was helping someone make up a tool, to use to hold their stick of deodorant. So they could apply it on their own because they don’t have the proper hand function. Their service dog also was laying peacefully on the side, with its gentle, calming presence. I talked to her again about Garrett from the conversation the other day, and how all I did was help cheer him on from the sidelines, to help encourage him to keep walking forward, upright, and faster! What’s so interesting is that stuck with him, and his mother. She came up to me the other day on Monday, and said, “Joe, Garrett was looking for you! He did so well up in the harness and walking!” He asked, “where’s Joe?” And that just hit a nerve. I said to Callie, “that’s all we can do sometimes, is give people hope. At the end of the day, it’s still them doing the work, needing to make the steps, or sit-to-stands, or apply something with their hands. But us on the sidelines, hope is sometimes all we can do, and all that THEY need.” And it was weird too, because this whole time it was making me very sentimental, and striking a chord inside of me. I told her how sometimes that’s all I need, in these really tough moments. Is someone there besides me, for me to know I’m not alone. It’s interesting to think how significant that whole process is to another human being. And truthfully, sometimes that’s all we have.
It really made me think, about life, the world, and others around us. Sometimes we all forget how important that aspect of our lives is. I guess I could just say I forget that, but I seem to see it all around me. People living more or less, for themselves. Each day, those kind gestures really do make quite the impact on others, we may just not know it yet.
This session had me whooped. Turns out my body was not ready to lay down, and I spent the better part of the night fighting off GERD, saliva worked up, spasms in the abdomen, and the urge to vomit. It sucks feeling this way. I could barely lay down and not feel quesy and ill. My body honestly sucks sometimes. Here’s for a long night.
11/13 – Hydration Rules – SCI-Style
I woke up way earlier than I usually do this morning. But my body is oddly calm? So I’ve been laying here taking notes. But I can’t sleep. I spent enough time laying here with my eyes shut. Sleeping is so hard for me. My body wants to be moving, and I don’t know if I sometimes get it to move enough during the day? Hard saying. Or too much?
I had a good session at PT yesterday, and my legs are holding me up better and better! I need to find a good way after PT to stretch my hips and knees out, and also in a way that isn’t super tedious or hard work. Everything I do seems to err that way, and when I’m pooped, I’d rather it not.
OK, after getting up a little bit earlier, lol well, there’s about the same time, I realize how important it is for me to make sure I’m drinking enough water. Last night when I woke up for the second time, I could feel the dryness in my mouth, and so I realized it may not the urge to pee. I may not feel it in my belly. I’m thirsty, but my mouth is dry. That should be a very clear indicator. I’m actually thirsty. So, what did I do? I just grabbed a drink of water, and I went back to sleep. I am noticing how much more responsive and active my legs are this morning because of that. Also, my legs are not super sweaty? My leg is still a little sweaty but nowhere near, but it can be. I also noticed that I just feel a bit better in my body because of all that hydration.
Pilates went great today! Therese always has a special way of getting my body moving and working in ways that I don’t quite seem to understand sometimes! It’s honestly great to just move, and not try to think about it so much!
Hard times….. Hmm coming back to this note, I am not quite sure what I was going to say, but I feel it. I feel what that could have meant.
Standing frame to end the night, let’s get some rest!
11/14 – To Plant A Seed
So what has been interesting, is how I coaxed myself to sleep last night. First, you plant a seed. Then, you give it light & water. Once you give it a bit of water and some time, roots sprout and grow and extend out. What’s interesting is I was using this analogy to think and coax myself to sleep, and boy oh boy are my legs sure sprouting this morning! The fullness, extension, and activation through my glutes, back, abs, quads and knees, shins and ankles, and feet is honestly tremendous! I was actually able to lay down last night, ON MY LEGT SIDE! It was relaxed, and I slept till about 1am on my left hip, but what woke me up was my arms both were falling asleep? So that tells me I’m definitely pinching some sort of nerve or something when I lay on that left side? Makes sense that I get so many spasms on that side.
But also, I got up in the standing frame last night. Read and drew a bit! My legs honestly were cooked! And it’s so interesting right now, because I made sure to drink probably more water than I ever did yesterday. I was “watering those seeds and roots”. I guess, what is it about that process? How much does myelin, and nerves all need water? It’s almost like, I increase my water intake quantity, to help increase the amount of nerve signaling? Haha! So crazy sometimes, to think in these ways, but honestly, my legs are feeling especially full today! Also too, I wore compression pants yesterday as well, and my proprioception in my legs was also a lot higher and actually calmer yesterday too!
Steadfastness. Keeping working. What’s crazy is I had a dream last night where someone had actually asked me if I had wrote at all that day, when I was feeling so sad. I hadn’t yet up to that point [in the dream] and I took that time to do so. I guess, it reminds me of what Therese said yesterday, “You don’t know / sometimes you don’t remember how far you’ve come in the past year.” And honestly, she’s right. I don’t always remember that. I’ve been getting more and more sad lately, and I can’t seem to figure out or understand why? As I’m writing right now and thinking about it, is that just it? Comparisons, jealousy, thinking we should be doing something different. Lately it seems like I have been thinking those things more often than not. (Sigh). To focus on oneself in the midst of the crowd may be the hardest thing we have to do sometimes. Maybe that’s where I am at too? I know I feel so sad about the fact I can’t participate in life the same way as prior to the accident. I told Callie that folks don’t seem to like me as much as they used to. She said that isn’t true. I miss and long to be useful in my hands, as opposed to just “pushing my way thru life”. I know I still have my brain on my head, but I think that aspect, handiness and usefulness, on an actual “thing” is what I miss. I’m working on getting to that point. So keep up your work and continue on the path you’ve found. It’s working.
I will also have to remember to keep on writing each day. 5,10,20 min of writing first thing when I wake up seems to pave the way for a successful day. I already feel it, as I’m continuing to type these words out. Now the hard part for me, REMEMBER THIS. Haha!
My legs responded really well to all the work yesterday. I am honestly always shocked at how the hydration goes for the day, paired in with exercise. I still haven’t figured that part out, but I think I’m close. I’m using my dry mouth now to be my cue to drink, and trying to drink more often throughout the day. I always compare it back to pre-accident days (PA days). But that may not always be useful for comparison.
I have new focuses, I need to focus on myself, and less about what I think others are thinking. Hopefully that pays out dividends in the future. Also I’m like weeks behind on publishing anything on the blog, get some of that updated too!
Only really had gotten up in the standing frame today, but I was able to do it 3 times! Let’s see how tomorrow goes!
11/15 – Looking Up! Eye Contact!
Man oh man, what’s so interesting is the pull in my belly. The tightness on my left side? My legs are getting more and more into extension! What’s interesting too, is how my left hip really is getting in extension so much better! The outer hips / glutes are really activating! Also my knees and feet / ankles proprioception is filling in!
It’s almost like I need to drink water on like, some sort of hyper-schedule. Definitely like it’s my job. My joints, tendons, cartilage, nerves, muscles, fascia, all need it. But what I don’t understand, is why before the accident, I didn’t need to drink so much water? Why is the process of healing so much more intense for this? I’m really picking up on the difference between slightly dehydrated, and properly hydrated now these days. It’s hard. It’s a fine line. But! I know how it helps though, my body does move so much better!
I had a day, where my body was given some rest. Truthfully, he needs days like this sometimes. I hit it hard. I don’t get many days where I’m giving him rest. My body knows too, how much it needs to move, but rest is always welcomed.
I had an interesting bathroom break, earlier today. I went, because I “felt” something that made me feel like I had to go, and had a tight back. It was weird. After I went to the bathroom though, I hardly had to go, and my back was still tight. Dangit. I’m dehydrated, then. Ugh. It’s so hard to get these signals, and *think I need to do a particular action. But then, after doing so, I’m actually wrong. Not fun.
I had an interesting time too, timing my alternate push strokes on the sidewalk. They are getting longer, and more fluid. This helped me actually look someone in the eyes for the first time on a walk like this, as they were passing by me! It was actually a pretty nice feeling. While in the bathroom, I had this interesting observation that our eyes really do lead where our muscles need to go. So what did I do? I looked up! And shortly after I could feel my quads kicking in kore than usual?!
Singing or humming, that would be like, alternating diaphragmatic work, right? Long slow exhale, rather quick inhale?
It’s been a lot of work this week, but I think that’s good. I’m building up momentum. A little mass with some velocity behind it always helps keep us in motion!
You know, this late night standing frame work, at 9:50pm, is really helping my body simmer down before I need to go to bed. I think this is a good move I’ve been doing, lately! Also gives me a place to do some work! Writing, projects, or reading! Going to wrap this night up with some much needed rest after being up here for 1-1/2hrs roughly. Time for bed.
The Astronaut on Earth 
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