But I think I owe it to everyone to give a little update since I haven't in a little over a month, haha. So, the bad stuff first. I mentioned in my last post how I've started experiencing this dreaded nerve pain I've heard everyone talk about. The cold and rain actually make it worse, so I've been feeling pretty great since the sun has been out for the last few days. I have some weird sensations, like my feet feel like they are asleep again. And I have kind of a new movement in my right quad...I can contract it and squeeze it on my own, which is a new "independent" movement and hopefully enough to get a little bit of an extension for therapy during my evaluation this week. I'm supposed to be done at KKI this month, which really stinks because I'm not sure when I'll be back. I turn 26 in July and really haven't sorted out the details or what I'm going to do for insurance and how that is going to affect which doctors I can see or what kind of therapy I can receive. Honestly, I don't even want to think about it because I'm worried, but I know it needs to be dealt with...I've kind of been putting it on the back burner, but it definitely needs to be handled soon because time is running out.
Anyways, so this nerve pain isn't bad at all when it's sunny and beautiful out, but during the gloomy, rainy days, I feel pretty much as miserable as it looks outside. It's kind of funny how much of an impact the weather has on us...not just how my body feels but it definitely takes a toll on my mood. Nobody likes leaving the house when it's gross out, but it's even harder going anywhere in a wheelchair...I can't hold an umbrella while I push myself, so I'm automatically wet unless someone is holding one over the two of us. Not to mention that my hands, sides of my shirt and pants next to my wheels get wet because it's not to easy avoiding the wet ground or puddles.
Therapy has been going well though. I've really enjoyed my time in the eksoskeleton and I've gotten more used to what I'm supposed to be doing when I'm in it. I feel like they're always giving me different commands and I get so overwhelmed! Weight shift this way, hold your leg straight here, kick this leg like a soccer ball, bring this foot up like you're stepping over a wall...it's a lot to keep up with! The pool has been increasingly better and I feel like that's where I see most of my improvement. Some days are better than others and on those days, I can bring my legs forward on my own and only need help keeping my knees straight. Other days, I need a lot more help and feel a little defeated that all days can't be good days. My last pool session went really well, though. My right ankle kept twisting and landing weird, so we did something we hadn't tried before- I had a therapist on each leg (mostly just to keep my knee straight as I brought the other leg forward) and I had complete control of my own hips. I usually need someone behind me to prevent me from sticking my butt out or using my body momentum as a compensation to bring my legs forward, but I was perfectly straight! My abs were on fire for a couple days after all this, but it was a big improvement!
Here's a laundry list of what is new and what I've been working on in therapy:
-working on my sit-to-stands (they have a long ways to go...even when someone is holding my knees, I still have trouble standing with the walker. I'm hoping most of it is just my own fear, but there's a lot of room for improvement in this area)
-Standing- I've even used virtual reality to help take some of the focus off all the effort it takes to stand and it has been going really well
-I did the RT600 for the first time in over 6 months, which is kind of like my bike. It uses electrical stimulation to make me support my own body weight to walk. There was a huge difference since the last time I did it and it seemed to go pretty well
-I'm still working on loading and unloading my chair from the car...it's extremely frustrating, but I'm determined to get the time down
-I GOT MY LICENSE!! I passed my DMV test last week! The Vocational Rehab said they are going to be able to pay for my hand controls...the only problem is that they've never done it before and I'm their first case, so we have no idea how long this is going to take. They don't do any back pay either, so I'm kind of at a stand still in driving until they pay for the controls. But once they do, my driver's rehab center is going to install them, make sure I feel comfortable, and then I'm free!
-School still sucks. I'm studying like crazy every single day and still feeling like I'm getting nowhere. I'm taking my two hardest classes, so I guess that is to be expected.
-I went adaptive indoor skydiving this week!! Spinalpedia and my friend Josh invited me for their "all abilities" night. They even had an extra spot and asked me if Dusty would do it... Dusty is very practical. He likes adrenaline and adventure, but he doesn't understand why I've jumped out of a perfectly good airplane before or jumped off a perfectly nice bridge...he hasn't even watched my videos from either experience! He told me once that the only way he would skydive is if he were only a few feet off the ground, so I was interested to hear his response when I told him about the opening for the indoor skydiving. Much to my surprise, he agreed, and even more surprisingly, he enjoyed it!! Even though we didn't go at the exact same time, it was such a cool experience to have together.
I guess that's a pretty good update for now. (Oh, and I've lost a total of 30lb!! So I should probably attach some photos as well...)
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