June 1

I stumbled upon this story yesterday...

http://espn.go.com/espnw/voices/article/15743440/one-small-step-my-10-year-journey-wheelchair-walking

So many things that she talked about hit home and sound familiar. People try to say I'm an inspiration, but this is inspiring to me. What an amazing testimony. My body slowly shut down just as she mentioned, but thank God, I woke after a month and not ten years. And I thought I had it bad? Luckily, I don't have anyone telling me I can't do things and I do have an abundance of support. 

Kennedy- Krieger is filled with hope. It's their motto and it's something I experience daily at this institute...cervical injuries walking? If that's not a public display of hope then I don't know what is. But I know what she means...the confidence is the hard thing. I have hope and I have determination, but sometimes I feel like people think I'm stronger than I am. I'm working on that confidence though. 

I didn't have any scheduled therapy today, but I still got to KKI early. I had metabolic testing done to determine my resting metabolism and how many calories I use and need during the day. The nutritionist was spot on by recommending 1350 calories because the testing determined I needed 1348 at the absolute least- she was only two calories off! I knew she had to be right because I've lost 6.1lbs in just under two weeks. It's got to be a combination of healthy foods, my hard work in therapy, and that my thyroid levels are finally back to normal.

I, of course, also rode the bike in the upstairs gym and got to catch up with some of the other patients I either don't get a chance to talk to because we're both working hard or because they only come a couple days a week. It's really helpful to talk to people going through something similar. What's also helpful is meeting with Dr. Sobelman, which I also did today. He wanted to talk about "coping" strategies...not just for current situations, but for life. I was intrigued by what that might mean, but also skeptical, thinking it was a bunch of nonsense shrink stuff (for lack of a better term haha). He asked me where emotions come from (how do you answer something like that??) I just said its a reaction to events...I was partially right. It's actually more of a reaction to our THOUGHTS about a specific event. I guess it's common sense...things are what we make of them, right? He drew a diagram with a traffic jam (TJ) as the event...

We usually think that it's as simple as an action and a consequence- from A straight to C, but we skip over B- the belief system and our thoughts about what's going on. Those thoughts are then broken down into a rational or irrational category. If all the thoughts are irrational or unattainable, then we'll never be happy. On the surface, this seems so simple and easy. But I feel like if we cautiously thought about this process on a daily basis, then it could change our attitudes and therefore the outcome of many things. 

May 31

My church has an app for your phone that you can take sermon notes on, access the Bible, listen to podcasts, and most recently- do a daily devotional. They post a short and sweet, one minute devotional everyday. Today it said that life is full of ups and downs and that when we're in the downs, we forget about the ups. How true is that? We get so caught up in the current circumstances that we forget about all we have and all the good that has happened. I hope I can start this week with that mindset and if or when I feel like my progress isn't that noticeable, I'll remember where I started from and how truly blessed I have been thus far.

It was such a good weekend and although I wish I had been at the beach for Memorial Day, at least the sun stayed out and Dusty and I found things to do and friends to reconnect with. We went to a couple vineyards, had a cookout with our families, met his dad and granddad for breakfast, and I got to see friends that I haven't seen since I was in the ICU back in September. (I actually don't even remember seeing them then).

This time last year, I was at one of my friend's weddings. A lot has changed in a year and she just had her first baby a week ago. That wedding was some of the most fun we've had and we made so many great memories. It was only one of the many weddings Dusty and I were supposed to go to last summer and we unfortunately had to miss a few. Every wedding we've been to, there always ends up being some great picture of us on the dance floor. 

I can't wait to be dancing like that again. 

Therapy went well today...when I got to the pool, there were about 30 people there to watch me. They were all rehabilitation residents from Hopkins that wanted to know more about Aqua therapy. So, I had quite the audience this morning. Rachel said she could really feel my quads contacting, but I still needed quite a bit of help at the knees. Then, I did some core stuff and the Geo with Dennis. The core stuff is constantly getting better and I set a new record for how many steps I've done on the geo- 2,724! 

May 29

I listen to "the Message" Christian radio in the car, so many songs at church are pretty familiar. I remember hearing the song "you make me brave" on the radio after I got out of the hospital and feeling like it was familiar for some reason. This morning, we sang that song in church and Stephanie told me she had heard it a lot when I first got sick and she played it for me in the hospital. She said "I kept hearing it during that time and played it for you at UVA. and it definitely depicts your relationship with the Lord especially as of late!" Here are the words:

I stand before You now
The greatness of your renown
I have heard of the majesty and wonder of you
King of Heaven, in humility, I bow

As Your love, in wave after wave
Crashes over me, crashes over me
For You are for us
You are not against us
Champion of Heaven
You made a way for all to enter in

I have heard You calling my name
I have heard the song of love that You sing
So I will let You draw me out beyond the shore
Into Your grace
Your grace

You make me brave
You make me brave
You call me out beyond the shore into the waves
You make me brave
You make me brave
No fear can hinder now the love that made a way

In today's sermon, Pastor John talked about the different ways God talks to us. One of those ways is through pain. He said sometimes it takes pain for us to slow down and listen to Him. I found that funny because I was actually just thinking about that this week. 

This was the scripture from the sermon:

What a shame it is that we as humans are so preoccupied with our own wants and needs that it takes something earth shattering to stop us in our tracks and make us slow down in order to listen to what God wants? 

This weekend has already been so nice and relaxing and it's only halfway over! We're always looking into things to do on the weekends mainly because it's the only time we have to do anything fun or different. Being in Baltimore four days a week revolves around therapy and then being in the hotel room. We don't really have time for much else. (Which is why if anyone has books on tape or tv series/DVDs to occupy our time, it'd be great!!) 

I had the idea of going to the National Zoo, but this weekend would've been the worst time for that with it being Memorial Day weekend! So I'm looking forward to doing that sometime in the next few weeks. Dusty and I ended up at Charlestown races and slots last night. I haven't seen live races since I was little. What's perfect is that we didn't have to spend money by going because everyone sent us with their money to make bets! We had absolutely no idea what we were doing. We got a program, looked at the names, then went to the counter to place our bets. Dusty told the woman we were clueless and she helped us, then we sat with the program and read the front where it tells you what each little number and phrase meant. But for the most part, I just looked at the color of the horse, the color of the jockey's clothes and the horse's name, haha. That explains why even though the horse I picked to place got third and I won a mere fifty cents. I guess when you only put $5 on a horse with good odds already, the payoff isn't very high. 

Today, Dusty and I met up with some friends at a brewery and then a vineyard...really just anything to be outdoors and enjoy this weather! Afterwards, we had a cookout with our families. I'm looking forward to having Monday off as well because as much as I hate days off from therapy, I like being able to do whatever we want on the weekends. So many times, it feels like as soon as we make it home and unpack, it's time to get right back on the road again. It could be worse though...at least I'm fortunate enough to be continually making progress and able to stay in therapy. 

May 25

I didn't have any scheduled therapy today, just a meeting with Dr. Sobelman at 10. This was nice because it meant we didn't even have to set an alarm and were able to take our time getting to KKI. My appointment with him went really well (just like last week). These are the type of people that should go into psychology. These are the type of people others feel comfortable talking to and opening up to without feeling like they're being too nosey or asking too many questions. Today, he just wanted to get to know me a little better. We mainly talked about my life- growing up, family, school. I actually don't even think we talked about current times and how I'm doing right now. I like that as he's getting to know me, I feel like I'm getting to know myself a little better. 

I'm learning a lot from this book by Keller. It's really making me think and also helping me deal with so many of my questions. I've been reflecting back to my time at Magee during inpatient. More specifically, when my friend Nick came to visit. I remember asking God why this had to happen to me, and then asking Nick if maybe it was some kind of punishment or was it bad that I had so many questions about why things were the way they were. He told me that it was okay to question and okay to complain because in the book of Job, he complained and God didn't consider it sinning. Keller has talked a lot about the book of Job in reference to pain and suffering. So much so that I've started reading that book of the Bible again. Sure enough, Job 1:22 says "in all of this, Job did not sin by blaming God." 

The nutritionist had discussed my diet and told me that my daily calorie intake should be about 1350 to maintain the weight I'm at- which is all she wanted. Well, good news, I've lost 3.5lb in the last six days! I'm supposed to have some metabolic testing done next week to get even more accurate information on the amount of calories I'm expending throughout the day. 

May 24

I LOVE working with Rachel in the pool! She's not only entertaining to talk to, but I really feel like she knows what she's doing and she always pushes me to do absolutely everything I can. We were in the small pool this morning and walked on the treadmill at varying speeds. Fast speeds have been shown to really trigger the nervous system, but slow speeds allow for me to concentrate and help more. She waited for me to initiate each movement, then helped me finish it. She told me that she couldn't tell for sure if it was movement coming from my hips and lower abs and I was compensating, but whatever it was, it seemed even better than last week. We also did some smaller squats with her at my knees and Tim (one of the techs) at my hips. She told me to try to use my legs and core as much as possible and not my arms and even Tim offered up the fact that it was mostly me doing them. He said he was barely helping. (And he never says things like that! Haha) 

During PT, I was in one of the standers for the first hour, doing a lot of arm exercises with weights and trying not to hold on in order to challenge my core. One of the trainers from upstairs was shadowing Dennis and stayed with us during the session. When Dennis went to introduce us, Kevin said he'd seen me a lot, but we hadn't formally met. He said he sees me all the time in the wellness gym and commented on how hard I'm always working. When I went to leave KKI, a woman id never seen before asked if I'd just got done on the third floor (where the GEO is) and when I said yes, she said "I knew it, I always see you working hard. You're doing a good job." So that's twice in one day that people I don't know recognized my hard work and determination. I didn't come this far by taking it easy, but it's a good feeling when other people can see that time I'm putting into recovery. I mean, it is my full time job right now. I know it's paying off too, because every time I get in the pool, it's better. 

I'm so thankful that the sun is finally shining this week. Mom and I have been spending all day at therapy and then just going back to the hotel room every evening with not much to do. At least now we can sit outside, but even then, it still gets a little boring. We try to pack all our food for the week and bring it with us to save money (and calories!), so we don't go out much. The house we're at  has tons of DVDs, but the majority are kids movies and we've pretty much watched all the adult ones. That being said, if anyone has any tv series or movies on DVDs for us to borrow, that'd be so great!! Also, if anyone has any books on tape for our car rides, that'd be great too! 

May 22

In church yesterday morning, we were discussing the Sermon on the Mount and more specifically, the Lord's Prayer. It's something we've probably all heard and most of us even repeat without really thinking about the meaning behind the words. I know I have. But diving into the meaning of those words really opened my eyes. More specifically, the line "Your will be done." So often, we pray and ask for things- I want this, I need this, if this could just happen... But I haven't thought about what God wants. What's His will? Is it the same as mine? He knows our wants and wishes before we say them and I believe in coming to Him with all our troubles, but I think it's important to consider that His will isn't always the same as ours and although that may be tough to handle sometimes, it's a better plan than the one we've created in our minds. 

John 16:33 "Here on earth, you will have many trials and sorrows. But take heart, because I have overcome the world."

It's an imperfect world where sorrow and struggles occur all the time. One question even believers often ask is how God lets bad things happen to good people. Maureen heard about a book titled "Walking with God through Pain and Suffering" by Timothy Keller and ordered it for me. I was thinking it would help handle answering that question. The book starts with an intro chapter that tells you what the book contains and gives a suggestion on how to go about reading it. Keller suggested skipping ahead to part two if you're actually in the midst of hardships, so that's exactly what I did. And, believe it or not, he dove right into answering that question. Genesis 1 and 2 shows us a world God created without death or suffering. The evil seen in today's world wasn't part of God's original design. Keller pointed out that even a peaceful death at the age of 90 wasn't the way things were meant to be. Genesis 3 shows that darkness came into the world because humankind refused to let God be in control. I like that he said "the world is too fallen and deeply broken to divide into a neat pattern of good people having good lives and bad people having bad lives. The brokenness of the world is inherited by the entire human race." Even Matthew 5:45 says "the sun shines and rain falls on both the just and unjust." 

There was a man that worked on a farm and had an accident on the job...Chad Hymas ignored the low hydraulic fluid  warning on his tractor because he was in too much of a hurry to get home and see his son walking for the first time. He was moving hay and feeding the animals when a ton of hay fell on the tractor and paralyzed him instantly. He came to Winchester not long ago to talk to the employees at White House Apple and my friends- the Gums, gave me one of his books. He talks about how he wouldn't change time and go back to redo that day over because he wasn't a very good person before his accident. It changed him for the better. I've heard my mom talk about that a few times to other people and say that that's what's hard for me- I WAS a good person before I got sick (or at least I felt like I was.) Keller really got me thinking when he said that when we stand back to consider the premise- that God owes us a good life- it is clearly unwarranted. If there really is an infinitely glorious God, why should the universe revolve around us rather than around Him? He goes on to say "perhaps the real puzzle is this: Why, in light of our behavior as a human race, does God allow so much happiness?" Well that's something to think about. Romans 8:28 says how bad things "work together for good." Is it because God allowed evil because it brings us far greater glory and joy than we would've had otherwise? Could eventual glory and joy be infinitely greater? What if the future is greater because of the brokenness?  If so, then it would mean evil isn't just an obstacle, preventing beauty and happiness, but it would have only made it better and evil would've done the opposite of what it intended. Dusty and I talk about that sometimes. We're not going to take anything for granted ever again and maybe it'll make us that much more appreciative. Maybe we'll be even happier people because we know how fast things can change or how bad life can get. This is such a good book already and I've barely read a quarter of it. It's really challenging me and making me think, but also helping me cope in a way. 

May 18 and 19

I've had a really busy, but really productive couple of days. I've been doing the stim bike and arm bike in the wellness gym, trying to burn as many calories as possible. Yesterday, had my appointment with the psychologist- Dr. Sobelman. He's an older man that owns his own practice, teaches, and comes to KKI twice a week. I always felt like psychologists had been forced on me and I never felt comfortable talking to them. I think sometimes this stigma gets associated with the words "therapist" or "shrink" or "psychologist." I've always been really open with how I feel about things and never thought I needed to schedule an appointment to talk about my feelings. Both Mom and Dusty have been suggesting I talk to someone since all this has happened. Mom thought I should because I get "weepy" sometimes and Dusty thought I needed to because "no one would be okay if this happened to them." They both thought it'd be best to talk to someone completely removed from everything that has happened. Someone who hasn't been affected by it. I've been kind of down lately and just...sad. Not at all feeling like I want to give up or anything like that, but just really struggling with the fact that it's all in God's time, not mine. I didn't know how to describe how I was feeling, but was worried it might be "depression." I don't really know what that feels like, but maybe that was why I've been so down? 

Not even five minutes into our hour session, Dr. Sobelman had me feeling a million times better. He started by telling me he knew nothing about me. He doesn't like to read anyone's chart before they arrive because he prefers to start with a blank slate and let the patient tell him about themselves. 

I told him about what has happened since the end of August. It was so easy and comfortable to talk to him and it wasn't at all one sided. He didn't drill me with questions, but rather talked about himself or told other stories. It's funny, but I kind of liked that he called me "kiddo." He said there are different stages of emotions after life changing events and that there's a difference between grieving and depression. He thinks I'm still grieving...grieving the way things used to be. Things changed in the blink of an eye. I literally remember going to the hospital, being in the ER, and then nothing. I didn't get a chance to adjust to the changes- and they're the biggest changes imaginable. I often find myself looking at pictures and wishing things were that way again. Grief. That's the word I was looking for. He explained the way I was feeling that fast. I felt like he'd known me for years...he said he had the feeling I was my own worst critic (completely correct), that I was probably a perfectionist (I guess I can't hide that), and that I was the person many people came to with their problems but that I don't often burden others with my own because I have trouble trusting others  (also correct). I wish I could read people that well and that quickly! He gave me the option of continuing to meet with him (once a week) and I didn't feel pressured to, but I gladly made an appointment for next week. I feel like I'm going to get to know myself through this process and I actually look forward to it. 

I also had a meeting with a social worker. There are just so many things that need to get done- some that I'm not even aware of and I felt like having someone kind of take over all of this would lift a huge weight off Mom and me. For instance, my handicap tag still hasn't gotten approved..and we started that process in December- before I even left Magee! I also wanted some guidance on things like getting back to driving. I'm not sure if I'll need hand controls or special accommodations, but I head the process takes awhile, so if I needed to, I wanted to get that started. Even if it means starting now then not needed special accommodations by the time it's all approved. She's also going to get Mom in touch with a woman from a peer mentoring program who has a daughter my age with a spinal cord injury. It's always nice to talk to others going through similar circumstances or who have done it before and learn from their experiences.

My last meeting was with a nutritionist. I've been feeling like I'm eating all the right things and just not losing weight. It's been a real struggle for me because I've always been pretty active- either running or going to the gym, so my activity level has dramatically dropped and there's not much I can do to burn as many calories as I used to. My therapy sessions are only equivocal to a normal person moving around on a regular day. The good and bad news is that the nutritionist said I'm eating all the right things. I eat the good fats, like avocados. I eat the flax and chia seeds. I don't eat sweets. I only drink water, tea, or coffee and never soda. And believe it or not, I've even been doing half caffeinated coffee with just a splash of fat free half and half and sugar. So her main suggestion was to just spread out my meals...eat the same things, but spread it out over the course of the day so my metabolic rate is more consistent. She also wants me eating more nuts and to have something nutritional, like hummus, as an afternoon snack. She said they don't know why, but studies have shown that drinking hot water with lemon helps with weight loss and increasing metabolism, so I'm doing that as well- I like drinking anything that'll keep my hands warm! Sometime next week, they're going to do a metabolic test on me where it measures the amount of calories burned by just sitting or sleeping so I can more accurately keep track of my calories throughout the day. It's going to be a lot of work, but I meet with her again at the beginning of July to see what has changed. Also- I just need to lose half an inch off my hips to be able to use the Esko skeleton, so I'm hoping this happens sooner rather than later because that's something I've been looking forward to since I started at KKI. 

As far as therapy sessions go, I was pretty pleased this week. The pool walking went well and Jen was happy about a few things: lots of quad activation, my left leg seemed to be doing more than usual, I was pretty good at weight shifting between each step, and am still doing a good job keeping my back leg straight. The Thera-stride went well Thursday and I was able to support more of my own weight. Then, we did walking over ground in the harness that also went well. And when we were doing that, Dr. Recio came into the gym. He makes his rounds often and always seems to know what all his patients are up to and how their therapy sessions are going. He stopped in front of us and said "she's really improving." Dennis agreed and Dr. Recio said "she needs to keep coming for therapy." Dennis said that he'd extended me through the beginning of July and Dr. Recio said that he didn't want me to have a discharge date. "She's STILL improving," he said. "I just saw her and she's got activation all the way down...it's not a 3, but at least all 1." I guess that means ideal movement would be rated a 3 and I'm not there, but hey, a 1 is better than 0. And how awesome is it that Dr. Recio is so excited about how I'm doing that he feels I need to continue exactly what we're doing? Later, Dennis made the comment to me that "a lot can happen in two months...we'll have to see where you are" when we were talking about how since I got changed to Dad's insurance, I have 140 therapy days and not unlimited. He said "we don't want to use all your days, then run out right when you really need them for gait training." He never says too many things like that, so I was happy ending the day and week like that. 

Everyone was starting to worry or question why I hadn't posted in a few days, but now you can see how busy this week has been! 

"But those who hope in the Lord will renew their strength! They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 41:31