June 14

My friend, Kristen, shared this quote: 

"When we have "I don't know why" situations in life, we have to make the hard choice to settle our mind with what we do know. Otherwise, the "I don't know why's" will sweep us away into treacherous currents of doubt.

So, I grab hold of what I do know.

I do know that my God is a God of protection. His love for me and you is so consuming, He can only have my best interest in mind.

I do know that my God is a God of provision. God's plans for me are good even when they don't align with mine. He will provide but probably not in the way I would expect.

I do know that my God is a God of process. God's process to develop my character to match my calling might include me having to learn to let go of something I treasure or my hopes and dreams to replace them with His. 

So, that's where I park my mind, my emotions, and my trust. It's a place I can wad up my run away emotions and hand them over to my perfectly capable and all-knowing God :)."

Isn't that amazing? Life is so full of uncertainty that all we can really cling to is what we do know. I know God has my best interest in mind and His plans are far better than mine. My whole life, I've been a planner and always knew what the next step was. Always had a game plan. It took something so earth shattering to snap me out of that and remember that it isn't about my plans and what I want. He's shaping me into the person I'm meant to be. It's a sucky process, I'll admit it. But imagine the compassion I'll be able to offer my patients and others in the future. I mean, I thought I was able to empathize with people a year ago, but now? There's no comparison. 

I had a meeting with Dr. Sobelman this morning and he asked how I was. I said good..and actually meant it. But he asked me why- what was good? I listed like four different things, including finally getting my letter off to school. I said how happy I was about that because I feel like my whole life I've been known as the smart girl that wanted to be an eye doctor. Not just because I'm smart and knew what I wanted to do, but because I've worked my butt off. I hate that since I got sick, people see me more for my illness or my wheelchair. Like I mentioned before, I feel like people think that since I'm physically on a different level, I might also be mentally on a different level and that isn't true at all. That's why I'm so looking forward to working something out with school and being "looked up to" and respected like that again. 

I didn't have any scheduled therapy today, but it was a busy day. We had a cookout at the house we're staying at. So many people are here from out of town (like way out of town- Alaska, Alabama, Ohio, etc) and they haven't been home in months. Something as simple as a burger on the grill can bring so much happiness. There's a woman here, Stacie, from Alabama who adopted a girl from China, Jin. She's 11, but had polio when she was a baby. She was also left laying in a crib at an orphanage for years with her legs in such a position that it disfigured her hip. They've been here for a few months already because Jin has had to undergo both knee and hip surgery and she stood on her feet for the first time this week. (And we had them look into KKI, so she has an evaluation coming up there!) Jin is so upset she isn't home with her friends for the summer and all she wanted was a grilled hotdog, so that's how we decided to have a cookout. It was good food, but even better company because everyone got a chance to get together and talk in one place. This place has become our home and these people are becoming like our family. 

I had my personal training appointment with Vickie this afternoon and loved it! She was a trainer for the 76ers and while she loved being able to work with such a big organization, she didn't feel like she was making enough of an impact. We went over some of my goals and took various measurements so we could track my progress. We then did a short workout that included a lot of sit-ups and ab exercises and some boxing. I told her that during my assessment on Thursday, I wasn't able to lay on my back and sit-up without using my arms. She thought I could do it and made me hold a 6lb medicine ball to help. It was actually fairly easy with the ball, so she had me go down to a 2lb one...and I could still do it! It's funny how I'm constantly surprising even myself with what I'm able to do...and things are constantly changing. I'm discovering different abilities on a weekly (and sometimes even daily!!) basis.

Speaking of new abilities....I discovered today that I can kick my left leg! It's easier if it's unweighted and kind of dangling, like from my chair or off the edge of the bed. And it fatigues out, but I can do it! What's funny is that by the end of the day, I was even able to do it with my right leg a little bit. It's crazy how fast things like that are changing. I can't wait to show Dennis tomorrow! He was excited about the reassessment last week and this is way bigger than the movement I showed then! 

June 13

I'm It was a beautiful and relaxing weekend- besides not seeing Dusty. Funny story though...he's been talking about wanting to white water raft since we started dating over three years ago. Him and a bunch of friends had gone and had so much fun before that it's all he's wanted to do- organize another trip like that. He finally got some people to agree to going and they booked the trip (in the middle of nowhere West Virginia). It was hot and sunny and although Dusty listened to me and put some sunblock on, he forgot to bring it with him to reapply once on the water. He ended up falling out of the raft and busting his knee on a rock. The employees told him he probably needed stitches, but he was convinced they only said that so they wouldn't be held responsible. In true Dusty fashion, he claimed it would be fine because there was no way he was driving hours away to seek medical help. One of the friends with him was a firefighter, so of course they thought they had the situation under control. They decided to pour vodka on the gash, put butterfly bandages over it, then wrap duct tape around his leg. Trust me, this was actually a better plan than the other option- to burn the skin shut and cauterize it. (Thankfully I talked them out of that!) 

My uncle was visiting from Australia and I hadn't seen him since he visited me at Magee...before Thanksgiving! He was visiting the states on business and was in town for a week and I remember that I couldn't even talk the first time he visited and by the second time, I had finally found my voice...but this is nothing compared to the changes I'm sure he saw during this visit. 

I had the pool at 8:30 Monday morning, so we headed to Baltimore late Sunday evening. The pool session went really well. I was with Beth, who I've never worked with before. We did a lot of walking with her at my knees and Eric at my hips. She kept asking him how much work he was doing, thinking he was doing more than just helping keep me steady at my hips, but that's really all he was doing, so she was pretty impressed. 

For PT, I did some over ground walking with me in the harness, someone at my hips, Dennis at my legs and me holding a walker...it's quite a process, haha. But Dennis said it was the most quad activation I've ever had. I was even able to keep my left leg straight all on my own. We then tried the same thing but loosened the harness, so it was like walking without body weight support. We did it for a few steps and Dennis was happy, but it was SO hard. I was a little upset about it later just because I know how hard it's going to be to get back to walking...I need so much more strength and I know it's going to take a long time. But Dusty gave me a pep talk and I've already overcome so much...everything I've done was difficult the first time and like I used to remind myself at Magee- the first time you do something is always the hardest...it only gets easier. 

June 11

I went through a couple of my things from my house in Philly- our garage is full of all my stuff from when my family moved me out of my house, so anytime I get a chance, I try to look at a few things or open a couple boxes. I can't do it for too long because my mind starts to wander and I get a little emotional, thinking about how I'm never going back to that house I loved so much and probably not going to live with my great roommates again. That chapter has closed and sometimes it's hard to accept. But anyways, I had a bunch of little quotes all over my room- in my desk, on my walls, etc. and I found one today that's from the show One Tree Hill and it says "you can choose to blame your circumstances on fate or bad luck or bad choices, or you can fight back." There are days that I just want to blame other things- anything to point a finger at, but like Dusty always tells me, this isn't how things are going to be. It only gets better from here and there's really nothing standing in the way of everything we want. Yeah, things are going to be harder and this definitely isn't how we planned things, but it's getting better. I don't know if I'm as strong as everyone thinks I am, but maybe I am stronger than I think. 

This isn't how my story ends. I didn't think I could possibly do much more than I already am. The main thing my body needs is just time, but I'm going to add in school (hopefully- once they receive my letter and we work something out) and I'm actually going to start meeting with a personal trainer at KKI this Wednesday. It'll probably only be about once a week, but she said we can work on whatever I want. Her boyfriend is a general manager at a Golds gym, so she even takes clients over there to use the equipment in a typical gym. I think this will be extremely helpful for when I'm not in therapy quite as much and need to do more of my own workouts, like resuming my gym membership at home. Not everything we do in therapy is something I can do on my own and some of the equipment we use isn't in most gyms. I'm really looking forward to it. I want to be the best version of myself that I can be and take care of my body as well as I can. One thing I've learned is that not everything is in our control, so we need to do what we can and control what we're actually able to, like take as much care of your body as you can. So not only am I trying to have the best diet and give myself the best nutrients, but I also want to be as strong as I can be. I'm interested in seeing what the appointment will entail. I know I've got my work cut out for me, but I'm willing to do whatever it takes to be as healthy as I can be. I'm determined to change things. This isn't how my story ends. 

June 10

You know that saying "you were given this life because you're strong enough to handle it"? Well, it sucks. Ever find yourself asking God "how strong do you really think I am?" Or "what else? Do you really think I can handle anything else?" I try to push those thoughts aside, but sometimes it's just too hard. Today is one of those days. It just feels like things keep stacking up on top of the pile. 

All this stuff with the insurance has been ridiculous. We thought the wheelchair was covered, or at least in network...it's the whole reason we went with the company we did. Mom even asked the vendor directly if the change in insurance was going to be a problem and he said no. Well, either they filed it incorrectly or the vendor was horribly wrong because we got a bill for over $5,000 saying insurance wasn't covering anything since it was out of network. The transfer board Dennis tried to order me so that I can transfer myself more independently (at least around the house) is more than likely another thing not covered. And, my parents just had to transfer a ton of money out of their retirement fund in order to pay the bills and pay for the bike. We're hoping that if we go ahead and pay for the bike now, they can start processing it and trying to get it in the house, and then maybe we can raise the money for it. Oh, but like that's not enough to deal with, today Mom went to the grocery store and had left her wallet on top of the car. She realized it right away and back tracked, but it was already nowhere to be found. All her credit cards, her license, and even cash someone had just given us- all gone. She turned right around and started looking, so I feel like she would've found it. My only thought is that someone picked it up, but that would mean that they didn't return it. At this point, we wouldn't even care if someone took the money, but going through and cancelling every single card and having to get a new license is such a pain. It's a shame...id hope that whoever found it would be a good enough person to return it. I guess we'll just keep our fingers crossed for now. Maybe it'll turn up soon. 

June 9

I had a urology appointment on Wednesday...Dr. Recio wanted me to see this doctor because, like with everything else, the bladder can have spasms as things start returning during the recovery process. The doctor was great- really knowledgeable in terms of urology, but also in patients with spinal cord injuries. He was also very hopeful and impressed that I didn't have to cath, which is typical in SCI patients (and he said that since I don't have to do it now, then I won't ever have to...he's never had a patient take steps backwards...as in, I don't have to now, so I'm not going to wake up next week and all the sudden need to). He took me off the medicine I've been on..I was mainly on this one because the doctors at Magee were using it off label for the sweating, but it's also an antispasmodic. He said that medicine is pretty old, so he gave me samples of a newer one he wants me to start taking instead. I'm pretty happy though, that's the only prescription medication I'm on besides my thyroid med. I take a ton of pills, but it's mostly vitamins. If I have to take meds, I'm glad it's not as many as I used to take and that they're just vitamins. 

What's funny is that Sam's husband is a drug rep and his main drug is the one I was just put on.. Crazy how things work sometimes. We've been talking about dusty and I going to Annapolis for Fourth of July and spending the long weekend with Sam and Brandon. She said there's a lot we can do that is fully accessible and it'd be nice to be with another couple that understands what we're going through. 

I had another reassessment. They usually take about 30-40 minutes, but this one took like an hour and 45 minutes. Everything improved...my reach, abdominal control, etc. Dennis could feel the hip and glutes and for the first time, he could feel the planar flexion in each ankle (downward motion, like pressing on a gas pedal). This meant that instead of a 0 for that category, I at least got a 1- something is better than nothing, right? But what took so long was that the knee flexion and extension I've had in the pool was finally seen on land. Dennis had me do it from all different positions to make sure I wasn't compensating by using my hips or abs and he wanted to make sure I had control of it and that it wasn't a spasm. He even high fived me (and he usually doesn't get overly excited about things). He wants me to use my personal stim unit and keep trying to kick my legs out- hopefully I'll just get stronger and it'll become an even bigger motion. Dusty told me he had a good feeling about this week! Also, Dusty's sister, Kasey, messaged me the other day to tell me she had a dream that we were in DC and I was walking all over the place...I feel like every time someone has a dream like this, something good happens. I can't wait to make all those dreams come true. 

June 7

I love Tuesday afternoons because for a brief 15-20 minutes before therapy, I get to talk to some of the other patients before our 2:00 sessions start. We aren't all there on the same days or at the same times during the week except for Tuesday's. It's me, Howard and Steve...Sam used to be part of this group, but she's taking a break from therapy for the first time in a year and for the first time since she had the spinal tumor removed. Steve is an older man...maybe in his 60s...with a high cervical injury from falling down his basement steps. He's a lawyer and a pretty well known man in Annapolis (he's actually the patient that threw that huge fundraiser for the Esko skeleton last month). He went to Magee after his injury, so we had a lot to talk about when we first met. Howard is also probably in his 60s and I love conversations with him because he used to be a lobbyist for the AOA (American Optometric Association). Steve always has different friends or family members bring him, but Howard is always there with his husband, Patrick. They've been together for 37 years! It's crazy to listen to some of these stories...we're all so different, yet have so much to talk about with so many similar experiences. 

Today, the conversation steered towards therapy and what we've all been doing. This was actually a little unusual because we usually just talk away about life and almost forget we're all there because of some kind of spinal cord injury. (Howard had back surgery and ended up septic with an infection in his blood, which paralyzed him). Both men use the Edko skeleton and are able to walk a little bit (men are lucky not to have wide hips, which is the reason I haven't used that equipment yet! Im only half an inch away!) but Steve doesn't have much arm or hand control and Howard said he's been struggling with the walking because his core isn't very strong. We joked that if we could just combine all our strengths, we'd be all set! I told Dennis about that conversation and he said he'd been working on my core on purpose- you need that strength first and he's been doing things right...I'm doing it in the right order (although frustrating). He even said he'd talked to Howard's therapist who said his legs started coming back so fast that they didn't spend much time on his core and she regretted it because now he's struggling a little. Dennis said he's doing things correctly with me and it made me feel a little better. It's so frustrating because all I want to do is focus on my legs and getting back to walking, but it makes sense that you have to do things in the right order. Babies don't just start walking, they sit up, then crawl, then stand, etc. It's all important. That conversation made me feel a little better and just reminded me how important patience is. 

June 6

My therapy has been extended through the beginning of August. The plan right now is to keep doing what we've been doing (and add an extra day of pool therapy so it's three days a week with both an hour in the pool and two hours of PT). If August comes and things are still pretty steady, then I might benefit from taking a few months off from therapy. It would give regeneration a chance to occur and me a chance to get back to a more regular routine. However, if August comes and I'm making significant improvement, then I would benefit more from continuing therapy. I guess only time will tell. 

Speaking of a regular routine...I finally got my letter finalized for returning back to school and will get it in the mail this morning. I'm hoping that'll spark a conversation about how to modify the program to best fit my schedule. Clinic is going to be a challenge, but one semester of course work? I just want to get it done! I need to. I need to stimulate my brain and get back to challenging myself mentally. It's part of who I am and I need to feel like that again. I feel like because I'm in a wheelchair and physically on a different level, many people are assuming I'm also mentally challenged or need to be talked to like I'm delicate or incapable of thinking for myself. I'm still the same person, and trust me, after all those cognitive tests the speech therapists made me go through, we would've discovered if anything was wrong with my brain! When I'm talked to like I'm incapable of making my own decisions, it just bring me down- more than I already am, and I don't need anymore help with that. It's already a daily battle to stay as positive as I can and to keep that spark of hope alive. 

My grandparents visited from Florida this weekend, which was exciting because they haven't seen me since I was still at Magee- I'm sure a lot has changed! Of course, this called for photographs:

Dusty said he has a good feeling about this week and I hope he's right...I have a doctors appointment Wednesday and I think I should have a reassessment at some point this week. Fingers crossed for big changes...