December 27

I realize it's been over a week since I've posted an update. The holidays weren't necessarily too crazy, but we were on the go and I did try to stay off my computer and phone as much as possible. 

I guess the first update is that the speech at White House Apples went so well! There were definitely a lot of people and I was so nervous, but everyone was so nice...there was a stage with a ramp attached that I was supposed to speak on..I couldn't quite push myself up the steep ramp, so I had Dusty help a little bit. I started my talk by cracking a few jokes about how "that's why I keep him around" and that "I hope everyone could see me because I'm a little shorter these days." I think starting that way (and actually having people laugh) made me feel more comfortable. I definitely read from my papers, but I think I was also good at looking up and adding a personal touch to different points I was making. I'll post my speech in the next post separately so everyone can read it. But, I'm still so flattered that I was asked to be a part of this holiday banquet and that I was given the chance to share my story.

 The icing on the cake was the generous gift the company gave me...I was moved to tears because it was almost a third of the (huge) amount getting my license is going to cost. 

Speaking of my license, I need to start studying for the test because I should be getting a letter from the DMV any day now about coming in to take my permit test. I can't miss any road sign questions and I know it's something I need to brush up on!

Anyways, Christmas was such a great time. I still remember that this time last year, I was worried I might not make it out of the hospital before Christmas. People changed around their holiday parties to accommodate my homecoming and I totally missed out on so many of the holiday traditions. I didn't get to do much shopping or see many lights, but I did get to cherish in the actual meaning of the holiday and what Jesus's birth meant and how important time with family was. 

We had different celebrations at mine and Dusty's house (including his graduation from his masters program on the 21st!!!) and then spend Christmas morning at his brother's house, watching his three year old niece opening all her presents. There's just something about being around children on Christmas that brings back all those childhood memories and that true "Christmas spirit."

Dusty got me an Apple Watch for Christmas, which is one of the only things I wanted. It has wheelchair settings for the fitness tracking and I love being able to keep track of my workouts or push strokes per day. James got me a coffee cup that keeps my hands warm and my parents promised me a trip to someplace warm in the upcoming months- maybe Florida?? I'm so thankful to have been able to actually be home and enjoy this time with everyone instead of having to deal with the question of when I'd get to come home and then having to adjust to life outside of a hospital after so many months. 

December 16

The past week has been pretty hectic. My Aunt, Uncle and cousin visited from Australia. I haven't seen my cousin in I don't even know how many years, so it was fun to catch up and actually get to know each other now that we're older and not just kids playing games around the holidays anymore. The two of us went to the gym with my uncle and lifted together, which was a little funny, but I was able to hang in there with the guys! (If you didn't know, pushing yourself in a wheelchair 24/7 really helps to make your arms extremely strong, haha). I was bummed to have to leave before their stay was over, because I would have enjoyed a few more days together, but Dusty and I had plans over the weekend.

Dusty's friends had their fourth annual Christmas party last weekend. Their circle of friends has gotten bigger and bigger as the high school friends collected college friends and everyone has gotten married, engaged, or added a girlfriend to the group. Since everyone is kind of spread out, they change who hosts the party each year. This year it was in Charlotte, NC. It was a long drive, but we had such an amazing weekend. The guys always love catching up and doing their own things, and surprisingly, all the girls have become really good friends. We even ordered our OWN shirts this year, without the guys (with the back of each shirt saying we were "married" "engaged" or "dating" the ____ alcoholic nomad). Alcoholic nomad was a name one of the dad's gave the group of guys during his father of the bride speech a couple months ago. It was hilarious and we had so much fun planning our shirts and starting a group chat, making sure we were doing things "without the guys." (and the end the weekend, the Redskins pulled off an amazing win against the Eagles, which is always a great way to start the upcoming week).

On Monday, I got some blood work done--and everything is fine. I have to get my thyroid levels checked every couple months to make sure I'm not taking to much or not enough thyroid replacement medication. After all, I wouldn't want what happened in the hospital to happen again. (The doctors at Magee changed my thyroid medication dosage, making everything off balance--weight gain, hair loss, brittle nails, change in energy level and sleep patterns. You name it, your thyroid controls an incredible number of things).

On Wednesday, I had an appointment in Chantilly with people from the Drivers Rehabilitation office that I met at the expo. I'm amazed at how fast things have moved along with that so far. It was just an evaluation--they checked my vision, reaction time, and watched me transfer in and out of the car. They also showed me a couple different kinds of hand controls. You can actually mount it on the left or right and they have different grips, etc. I was also impressed that there's a cover that can go over the pedals to prevent me from accidentally pressing on the brake or gas if I got a leg spasm. I'm glad they have such a thing, but I hadn't even thought of it before! Tammy, the woman in charge, said that I was going to be a pretty simple case since I didn't have any upper body deficits and the next step is to wait for something from the DMV (hopefully within the next week), telling me to come take the permit test. I seriously can't believe I have to take that again! Although, it's probably good, the more I think about it. I've realized how many road signs I don't know and having to study them again is only going to benefit me, haha. The really unfortunately thing is how much all of this is going to cost, though. Once I get my permit, I can only drive with the instructor and I'll have to complete so many hours on the road (I'm not sure the specifics yet). Then, there's a lot of paperwork and then I'll have to pay for the adaptive equipment and the cost to install it in mom's car. I really need a new car because I don't have one any more, but I think the most cost effective thing to do right now is just to modify what we have. I think once it's all over with, it's going to cost close to $5,000. It's mind blowing that getting your license back would be that expensive. I'm looking into different organizations that may help cover the cost of the driving lessons or the cost of the equipment, so hopefully something works out.

I'm giving my speech tomorrow and I found out there are going to be 350 people!!! I'm sure it'll be fine, because the easiest topic to talk about is myself and my own experiences, but I'm still a little nervous! I finally finished writing it and I'm pretty happy with it...I'll post it in my next blog after I give it. I think the words I wrote are good, I just pray I'll be able to deliver it well.

December 7

It has been such an eventful day and I haven't even left the house! haha. On Monday, I started to go through all the business cards and informational brochures I had accumulated over the weekend. I sent several emails and have began to get responses back already. So far, I have the appointment with the Driver Rehabilitation Services next week and have been talking to the woman in charge about possible grants to pay for the hand controls I will need. Once I get some of the paperwork in, I'm going to have to go to the DMV to take a test in order to get my permit (UGH, it's like I'm back tracking 10 years and back in high school!)

Today, the chiropractor got back to me after sending a brief description of my case to the online chiropractic group he belongs to. Within minutes, he had a response from a doctor in Front Royal (only about 25 minutes away). While he hasn't met this doctor personally, his credentials were impressive. The doctor has worked a lot in the field of sports medicine and has personal experience with paralympic athletes... he just got back from RIO! I'm crossing my fingers that he's in network with our insurance! But I'm going to wait and see what responses appear and then compare them with the insurance allowance...hopefully I'll know something by next week sometime.

I've also been in touch with a company called "ReWalk." They have personal exoskeletons that people can use at home. The rep even told me they have some insurances cover it because it has shown to help patients so dramatically, just being able to be up on your feet, weight baring and getting your brain and body used to the motion of walking again. I filled out a questionnaire and they think I'm a good candidate based on my injury level, height, weight, etc. I just have to get a doctor's recommendation and I can attend one of their screenings...more than likely at VCU or the University of Maryland.

One of the other connections I made this weekend was a girl my age named Alex. She is sponsored by the company that makes the chairs I fell in love with at the expo. She's also an ambassador for Project Walk, which is a program across the US that I really want to look into at some point (I'll talk more about that a different time). But anyways, she's from Lancaster and not too far away from me. It can be really hard not having girlfriends in wheelchairs that face the same difficulties as you on a daily basis, so I think we both really enjoyed being connected and have been talking ever since. Today, she messaged me and asked if I'd be interested in a wheelchair dance team. There's one on the west coast, started by a girl named Chelsie Hill (I actually got to meet her this weekend, by the way!) She was on the SunDance tv show "Push Girls" and is also a rep for Smart Drive and has created a line of jeans for people in wheelchairs called "ability jeans." Their dance team is called the "rollettes" and they perform at various places, including several expos (unfortunately not this past one, though). So, Alex wants to start a team on the east coast and said I was the first person she thought of! My family laughs because I have awful rhythm, but I really did used to dance (12 years to be exact with my sweet grandfather driving me to every practice) and I was actually pretty good. I did tap, jazz, ballet and even a year of point (with those crazy ballet shoes where you stand on your toes). They had a dance workshop this weekend and asked people to come up front for some freestyle. Embarrassingly enough, the instructor (who was also on the show Push Girls) called on me and I couldn't just say no. (there's a video, but I'm hoping that doesn't make an appearance anywhere online). Afterwards is when Alex and I started talking and this guy even came up and jokingly asked for our autographs after the dancing. It's been a running joke with my family the past few days, but getting that message from Alex today was really exciting!

As far as school goes, I got in touch with the professor in charge of the other course I'm taking. She's been on maternity leave and it's made communication a lot harder. I still have to take both the midterm and final and there's a TON of information. Luckily, I've stayed on top of the material and can hopefully take the midterm early next week, then the final not long after. I keep reminding myself that I just need to make it through. The perfectionist in me is having a really hard time with this!

December 6

To say I got a lot out of this weekend would be a huge understatement. I think most people go to these things and see most of what they want in one day, but because all of this is so new to us, we went to literally every booth and attended all three days. Here's just an overview of who I met and what I talked about:

• DRIVING!! This gets to be number one because it's what I'm most excited about. I've talked about it before and how much I miss it. You don't really realize it, but it's a major source of independence and freedom and I long to have that again... not even so I can go anywhere in particular, but just so I can go...whenever and wherever I want. This connection went so well that I had Dr. Kozlowski sign my referral form yesterday when I went in for blood work and they called me today to schedule my evaluation appointment!! I can get this whole process started with my eval appointment next Wednesday! I think the process still takes awhile, but they will be able to tell me what to do, what equipment would work best for me, what car to look at, etc. (because remember, James so nicely totaled my car for me this summer, so add that to the expenses we're dealing with).
• Therapy dogs!! I didn't know how much they can do for someone. It's a lengthy process (as in a couple years), but the more I talk to people, they think I'd benefit even more from this once I'm on my feet. Needing to bend over when using a cane or walker will be difficult and I may just feel unsteady in general. But what I really didn't know was that there are organizations that pay for the dog (otherwise, I think it can be around $50,000!!!). It's an intensive application process, but they advised me to go ahead and get started. I figured I could give it a shot and if it works out, then how great?!
• Adaptive sports...I've said it before and I'll say it again, I'm anything but an athlete! Seriously. It's torture when a therapist brings out any kind of ball and wants to play catch, but after my amazing experience surfing, I'm willing to try anything once. One guy had some adaptive equipment set up and I was able to look at the skis (I agreed to do that in a couple months with no idea what I'd actually said yes to, haha) they were awesome!! There are double skis and mono skis and the seat has to ability to raise and lower, allowing you to slide onto the lift...which by the way, never crossed my mind before. I'm sure I wouldn't have thought about it until I got there and then would have started freaking out about how I was getting on and off the ski lift.
• I talked to a lot of people about advocacy. I want to get involved in as much as I can now, so that I can really put that MPH to good use when I get it. 
• There was an awesome stim unit that could hook up to a large number of muscle groups. They put it on my shoulders and showed me the numerous settings and I was amazed that it actually felt like a massage chair, not the typical uncomfortable feeling you get from stimming a muscle. It's actually called "EMS" therapy and because it helps so much with soreness, like in your shoulders from pushing all day, insurances usually cover it. 
• There's something called a "smartdrive" that I kept trying out and hooking to my chair. Insurances usually cover this as well and it's like a little battery pack that gives you extra power. It makes going over carpet and up hills a million times easier and really saves your shoulders from over doing it. I also liked that you could have something in your hands or on your lap and not need both arms to push yourself, just one to help steer a little bit. And you could push a shopping cart in front of you at the grocery store. I'm already in contact with the rep and going to have Erin at KKI help me with that process. 
• A chiropractor. He works with different SCI patients and is located about an hour from my home, but I talked with him about whether I'd benefit from that kind of therapy or not. He did a short assessment and could tell I had activation all the way to my toes. He asked me a few questions and told me that because I have some impaired sensation, a chiropractor may be able to tell if I'm tender or tight in certain areas better than I'd be able to tell. By working out those areas, you may get a better response from the nerves in different areas. He said "I'm not saying that seeing a chiropractor is going to make you walk tomorrow or anything, but I really do think it might help speed up this process for you." The main thing is that I'd have to see something with experience and the willingness to work with a case like mine. Someone that is going to do their research and not take any unnecessary actions. He's already looking into helping me find a doctor closer to home so that I can give it a try...if he doesn't have any luck, I wouldn't mind driving to him because he was so knowledgeable. 

I'm still overwhelmed with the vast amount of information I was given and I'm sure I'm leaving some things out, but one thing that really stuck out all weekend was how many people stopped me to ask about my chair. Vendors, patients, etc. all told me how awful it was. It doesn't fit me like it should and I'm over working myself, putting in way more effort to get around than necessary. I even went to a wheelchair skills workshop because I wanted some help with wheelies and curbs, which are even harder since I got my new backrest and seat cushion. I thought it was just me, but the people working the clinic even stopped after about thirty minutes and said it really wasn't my lack of being able to do the different skills, it had more to do with my chair and how "off" it was. The axels for the tires aren't in the right spot to make pushing easier and because of that position, it's heavier in the front, which explains why I can't hold a wheelie or why I have to tip so far back to find the balancing point of being up on two wheels. Even James got in one of the vendor chairs and was doing wheelies like it was no problem and said he can't even do one in my chair. The people at the driving booth told me how much trouble I'm going to have with driving, not because of the hand controls, but because my chair is going to be so hard for me to get into the car by myself. (how ridiculous?!!) So, I met with Permobile, who makes chairs called "TiLite." They have both aluminum and titanium frames (both which are lighter than mine), but the titanium was unbelievably light. I could lift the entire chair over my head! haha, and that is with some impaired core strength, so that tells you how incredible they are. The rep from the company took the time to really educate me about what I should look for in a chair and how it should fit me. I mean, even little things, like that my foot plate doesn't need to be 14 inches wide and that any time you have a movable piece (like a footplate that flips up instead of a stationary one), it adds weight. He went ahead and priced out a whole new chair, like what I'd do if we were to start completely over, so that it was in their database and so that anyone would be able to pull it up. I sent an email to Erin at KKI, who does a lot of things in their wheelchair clinic, so hopefully she can help me figure out what to do next. Everyone seems to think I need to get in touch with the company that oversees all the other companies that made the parts to my chair. The seat cushion, back, tires, frame, etc. are all made by different brands, so if we get in contact with the one that oversees them all, explains that this chair has never once been right, maybe they'll be able to shed some guidance on how to handle things.

It's incredible to think about how much time would be saved and how much happier everyone would be if we lived in a world where people just did their job right the first time. 

December 1

I know it's been awhile since that last update, but that just means there's more news! It's nicer for me to reflect after a couple weeks or even week to week instead of day to day. You don't really notice many differences each day, but you actually appreciate changes after a little bit of time has passed.

Thanksgiving was definitely a day to be thankful for...well, more like a week to be thankful for. We always have Dusty's family over each holiday to have just appetizers. Mine and mom's specialty is all the appetizers and it's always a big hit, so we started a tradition of  "snackmas" a couple years ago, then continued it for Easter, as well as "snacks giving." So, that's what we did on Wednesday. Then on Thursday, James was hunting and everyone was kind of off in different directions (and I knew Dusty would want to watch the Redskins game), so Mom, Dad, Grandma and I went to my friend Katie's house. We've been friends since high school and it was just her and her parents since her sister was at her in-laws with their baby. So, it was just the 7 of us, but it was so great! They were so inviting and really made us feel at home. The only thing that sucked was when I got home that evening (after staying off social media and my phone all day) to watch the recorded Redskins game and saw the Cowboys take the win. (Darn!!)

Oh, but the real highlight of the day was that Mom woke up that morning after having a dream that I could stand with the walker. So, before we went to Katie's, I stood with the walker! I needed a little help getting up, but then I put my hands on the walker and stood completely on my own...not for long, but I still did it! And that's better than the last time I stood with Dennis. He had to block my knees and have a harness around my hips to support me.

On Saturday, Katie and I spent some time catching up and watching the VT game (and I got to teach her how to help me take apart and put together my chair after getting in her car). Life skills, right? ha

Other than all that, I've just been slowing making it through my school work. I took my final (with a 91%!!) and finished one of my classes. Granted, it was just a short course and I still have a lot left, but getting one completely done really made me feel good.

This Monday was my last PT session with the SU students, which I was so upset about because I've really been getting a lot out of it. Luckily, I was talking to one of the girls about adaptive skiing and she told me that her next clinic rotation was at Wintergreen (only about 2 hours away). They were so excited that I showed interest in it that they called the instructor, who came right down to talk to me about it. They do a program called "PT and ski"each Thursday in the months of February and March. They do PT inside, then hit the slopes. I told them to sign me up! I'll be back at KKI by that time, but we'll just have to schedule it so I'll have Thursdays free. I know it'll be a busy few months, but I'm really excited to see all the changes since when I left in August. And we all know I don't do well with down time, so being on the go like that and having PT almost every day will be great.

Lastly, I went to the pool at the gym today for the first time in a few weeks. My arms are already sore from swimming! And I took the walker in the water. I usually stand with it, but have never tried walking, so Mom and I decided to attempt it today. It took a lot of coordination, but I'm glad we tried! Mom had to stand in front of me and push whichever leg I was standing with straight while I stepped forward with the other one. I can't keep my knees straight for very long at a time, so I needed her to push it straight while I weight shifted. I think that'll get better as my legs get stronger. Even with my toe dragging a little bit and her assisting me, I still took four steps! and I didn't have any hip support, so I'm really excited about how aqua therapy will go in a couple months on the treadmill.

This Friday, Saturday, and Sunday is the abilities expo in DC. Registration is free, so I signed everyone up several months ago. It's a huge event with tons of vendors, workshops, seminars, etc. There's adaptive dancing, wheelchair basketball, art therapy, acupressure, etc. I've been looking forward to it for a long time and think the whole family is going to get a lot out of it. I feel like we are constantly learning new things and having a bunch of actual vendors and other wheelchair users all in one place is going to be so beneficial. And I'm really excited about all the workshops, like yoga, dancing and wheelchair skills. I can't wait to update everyone on what we learn this weekend! Mom and I are going tomorrow, then Dusty and Dad are joining us Saturday...and James might even come on Sunday.