August 2

There are so many updates to post about!! First of all, therapy ended on a great note last week. I had been excited to stand in the pool without knee support, but then Dennis and I stood on land and he took away knee support for a few minutes, which was even more impressive. The Thera-stride keeps going well every time we do it and OT has been great! I used to have so much trouble with lower body dressing and things like that and not only am I doing all of that by myself, the timing has improved significantly. And I don't know if I had mentioned it, but all my fine motor skills and upper body strengths are completely normal now. They pretty much were before, but according to certain standards, I still had some minor deficits. 

On Thursday, my friend Steve joined me for lunch in the cafeteria. I talked about him awhile back- a man in his late 50s/ early 60s who had a car accident three years ago, but does all these incredible things, like snorkeling and parasailing. He truly doesn't let anything hold him back and watching him do things or hearing him tell stories about his adventures gives me so much motivation. He told me that everyday he wakes up and says "I think the extraordinary so I can achieve the ordinary." I liked how he worded that. I had been wanting to talk with him because I'd seen him getting in his car (a sweet convertible) a couple weeks ago and I wanted to know more about driving and how he gets his chair in and out of the vehicle on his own. He explained everything to me and offered to show me the hand controls whenever we have time. 

Dusty and I drove to Philly for the concert on Thursday night. We met with my school Friday morning and it honestly couldn't have gone any better. So many times people say "we'll make it work" or "of course we're wheelchair accessible," but rarely do people actually understand what it takes or what that means. Not only was campus easy to get around, but so was both clinic and lab. They're still working to write out a curriculum just for me, but the hope is that I'll be able to start in just a couple weeks. They'll give me just enough credits to get financial aid and keep my other loans in deferment, so it might just be a couple online courses to start with. They said they'll combine the scholars and traditional programs and do as much online as possible. They're even talking about an exam software for my computer so I won't have to come to Philly very often. There's still a lot up in the air, but I said my main goal was to take part one of boards in March and to be ready for externships whenever I end up leaving for them. I'll also be with the scholars students and professors in clinic and we're going to try to schedule that in a way to cut down on how much I'll have to travel. 

Afterwards, Dusty and I went to clinic and Dr. Tonkery came along (so did the man from the Office of Academic Success because he wanted to make sure everything was accessible). I tried out different exam rooms and the various equipment. Dr. Tonkery even had me do a few different procedures on her so we could problem solve through any potential difficulties. I hadn't touched a slit lamp in a year, but it felt like it hadn't even been two days. It all seemed so natural and I was so relieved. I can't wait to see what they end up proposing and how it'll all piece together. I'm so incredibly excited though!

The concert and my birthday were both great, maybe because I was still on cloud 9 from my meeting with school, but it was so good to catch up with a couple of my friends and then have a birthday dinner at home with my family. Things are really turning around and I'm determined to make 25 the best year yet! (Not like it could be worse than 24 though, right? Ha)

July 27

I did the Geo for the first time in awhile this week and it went so much better than I remember. We used stim on my quads as I did it and I actually like that even better than the spinal stim (at least while on that machine). 

I also did the Thera-stride for the first time in a couple weeks and Dennis said it was the best it's gone. I've only gotten him to say that a couple times, but he really thought things were smoother this time. Afterwards, we did some walking over ground with the walker. I really don't  quite know how that is going when I'm doing it because I can't see myself and just because I may think I'm doing well doesn't always mean in actually moving my legs in the way that I think I am. But I actually had two people come up to me and tell me how good my walking had looked- one was even a therapist! 

Generation regeneration is a meeting KKI has every month and the topics always change. This month, it was about back to school. How perfect that this topics came up on the exact week that I have a meeting with my school about getting back? Mom and I met a family from Arkansas whose son was in an accident three years ago and is currently in undergrad in Memphis. Needless to say, they've been through the process of getting back to school and figuring out what has to be done to get certain things accomplished. They offered some really great advice and kind of guided us on what to look for and what questions we needed to ask. They even gave us their information and offered me a place to stay during my rotations if I find a place nearby! (Since they know their house would be a perfectly accessible place to live!

I finally got to see Dr. Pardo at Hopkins on Wednesday. Unfortunately, he didn't have all my old records and old mri's, so he couldn't tell us too much yet. He also needs to see the new MRIs I'm getting in the next couple weeks in order to know the extent of the damage and get a better idea of everything that has happened. However, he was very hopeful and positive. And he loved my positive attitude (which he calls "vitamin P"). He said my recovery will take three things: rehab, time, and vitamin P. The reflexes in my lower body (which were non-existent in March and then only "1" in May), we're now a 3- out of 4! And the sensation was even better. Dr. Pardo kept telling his residents that meant the dorsal column of the spinal cord was intact and it was a perfect example of how plastic the spinal cord is. He's under the impression the diagnosis is still ADEM, but is curious is any other autoimmune processes were at play given my personal history and that of other family members. He ran several blood tests and sent several samples to the mayo clinic and said he'll call with the results as soon as he has them. So, we didn't really get too many new answers, but I was encouraged by his positivity and we'll hopefully know more after the bloodwork is read and the MRIs are completed. 

July 25

Taking a week off and being away from everything was so perfect, but one thing I was really looking forward to was church on Sunday morning. The sermon was on healing. Well, let me backtrack. The whole series is "___ happens." This Sunday was "healing happens." We heard stories from others...like how a woman had bacterial meningitis at two weeks old and wasn't supposed to live. And if she did, she wouldn't walk or accomplish many other milestones. One woman was told she would never get pregnant, but is currently seven months along and carrying a healthy baby. The stories went on and on and these people talked about how they just prayed about their situations and just kept faith, handing everything over.  There were so many testimonies of miracles that have happened...and they were everywhere. It wasn't just a one in a million occurrence, there were tons of stories from the people in our congregation alone. One thing I took from the sermon was when Pastor John said "sometimes healing leaves a scar and sometimes it leaves a limb." Like a new branch...with new possibilities that leads to a different route. 

The one minute devotional was this:

It's been one thing after another and I really feel like God is telling me not to lose hope and not be discouraged. And it all comes right when I need that reassurance. At the end of the service, members of the different prayer teams were up front and available to pray with anyone that wanted "healing" or prayers. Some people went forward and others left to carry on with their Sunday plans. Dusty looked at me and asked if I wanted to go up and, honestly, no- I didn't. I don't like doing anything that draws more attention to myself, even if it was in church. I just feel like I already have more eyes on me because of this wheelchair, why do anything that makes it worse? But something was tugging at my heart and Dusty and I went towards the front. Everyone was already paired up or in groups, but a man came up behind me and held my hand, saying "I don't know you or your story, but I just feel called to pray for you." And he did. And we cried together. And I didn't even really see his face...I couldn't pick him out of a crowd if I saw him again. I was telling my family about that and they told me he was actually on his knees next to me and he wasn't one of the members of the prayer team...he was just a member of the church that saw me go towards the front and decided to follow. My heart just felt so at peace when we left and as I went on with my day and I just have a really good feeling of what is to come. 

Our Sirius XM radio prescription expired for in the car and we decided that was a luxury we could do without (even though that makes the drives up and down the road a little more frustrating, trying to find stations without static. But hey, first world problem, rights?) luckily, we found KLOVE, the station I listened to with Herb in Philly! On the way to Baltimore, we heard the encouraging story of the day and it was about a man paralyzed over 12 years ago. With intense years of therapy, he finally stood on his own for the first time in over a decade. He posted something on Instagram about it with the hashtag #GodisFaithful.

 http://abcnews.go.com/US/paralyzed-football-star-stands-unassisted-time-10-years/story?id=40775555

I felt like both finding this station and hearing that story was meant to be, especially after a week away from therapy. It got me in a better mindset to take on the week ahead. 

I had the pool first thing in the morning and there were a lot of changes since I saw Beth two weeks ago. She said I was actually picking my left leg up then swinging it forward and my right leg was still initiating movement towards the end of our hour together when it usually fatigues pretty quickly. But the best part was that I did some standing between our bouts of walking and I was straightening my knees on my own...Beth was able to take her feet completely off my knees so I was doing it all...and the guy holding my hips forward said he was barely doing anything either. Then, I even took one arm off and hold it in the air.

The Rt 600, the machine that's like the stim bike, but has me standing and supporting my own weight with stim, went even better. Dennis said it was going so well that the machine was making noises he wasn't even used to...I'm not sure if id take that as a good thing, but he did. Haha. 

July 22

I had more wonderful visitors today!! My other friend named Christy works from home on Fridays and came over to keep me company. And I was thrilled she brought her 12 year old daughter, because of course this meant watching tv and painting our nails. She even treated us to lunch, which has been totally unnecessary from all our visitors this week, but I've been so thankful. 

I thoroughly enjoyed the time at the beach and being able to soak up the sun, but I also really enjoyed being home with Grandma, catching up with my visitors, and finding some of my own independence. Grandma and I had such great bonding time. And being able to do so much for myself made me feel really good... I made myself breakfast, got my own coffee, and then Dusty and I made dinner tonight! I felt kind of bossy saying "I need a bowl" or "get out the garlic press" and "do we have a new container of mayonnaise?" But in the end, it was me that made dinner and it was amazing food and a wonderful experience. As Dusty would say, I was "back in my element." These last few days showed me how much I can do own my own and I really feel like if I was in a completely accessible environment, I'd totally be able to do everything on my own. That makes me feel so amazing. 

This week's break was just what I needed and I'm going to go into this next week feeling so refreshed and determined. I have a really good feeling about what's to come. First of all, it's my birthday week! I have an appointment with a neurologist at Hopkins on Wednesday and I've been waiting for this appointment for so long. I haven't really seen a neurologist since UVA. It's been all rehab doctors and I just have so many questions. Dr. Recio said this new doctor, Dr. Pardo, is a transverse myelitis specialist and has seen the most cases of ADEM in the nation or something like that. He said not to be surprised if he changes my diagnosis just because he's so experienced and may know more than the other doctors I've seen. I'm hoping we'll be able to sit down and look over my old mri's and learn more about what the heck happened to my body. Then, I finally get to meet with my school on Friday! I know it might be an emotional trip and being back on campus or seeing friends and professors for the first time since I got sick may be strange, but I'm looking forward to it. The concert should be a really good time Friday night and then being able to go by clinic and say hi to everyone at Magee will be nice as well. I think it's only going up from here! 

July 21

I forgot to mention some of the other highlights from the beach...our friend, Judy, welcomed Dusty and I into her beach condo and even offered it up as a place for us to stay if our house didn't work out. It was so great to have another place to go and a good friend to share a glass of wine with. Her and her husband even had us over one night for fresh crabs and it was such an amazing night.

Dusty and I came home last night since he had to work today and tomorrow. Mom and Dad are at Deep Creek Lake with friends for the week, so Dusty is staying the night at the house to help me with whatever I need before he heads to work. And Grandma is here during the day. I've also been fortunate enough to have several friends come by for company and/or food. Today, Maureen spent a long time here and brought over lunch, which we got to enjoy on the porch. And tonight, Christy Jaye is coming by with one of my favorites- sushi! I knew Grandma would be here these two days if I needed anything, but I wanted to have a few friends stop in, just in case we needed anything else and I figured having company would make the days go by faster since we're kind of stuck here. It was amazing to me how quickly people responded to my messages and how willing everyone was to help. I'm continually shown how blessed I am with such wonderful people in my life.

Some fundraisers are coming together. We have a date for the walk/run event at Parks and Rec- October 15! Dusty's aunt and some friends are organizing that and I'll post more information as it becomes available. The thought is that we'll have sponsors and tshirts and really just make it into a big event. Another fundraiser is with LuLaRoe. A friend sells that clothing and wants to have a party in my name. It'll be on Thursday, August 25 at 8pm and we're calling it "Leggings in Motion for Kelly." For every pair of leggings sold, the company will give me $2-3, but she wants to also give $5. They're the softest leggings I've ever owned and I'm hoping it'll be a big hit.

I really want these fundraisers to be successful. Not only to help with the bills that have been piling up, but also to help pay for some of the equipment I need, like the stim bike and a standing frame. I want to have these pieces of equipment in my house because I'm hoping to return to school at the end of next month. I'm stopping therapy in the middle of August for the time being. Dusty and I are meeting with a few of my professors in Philly next Friday. They talked about possible options in order to have me return to the program, and I'm looking forward to hearing about everyone's suggestions. I don't know if they have any of the courses I need available online or if I'd have to move back to Philadelphia full time, but having the equipment would allow me to continue my own therapy at home.

As much as I don't want to stop therapy (mainly because I still haven't hit a plateau and am still slowly improving), I really just want to get this last semester of courses over with. I've come too far to take this much time off and I'm too passionate about this profession to not achieve my dreams. Dusty and I are going to the school for that meeting and then hopefully going by clinic as well. I think I just need to see myself back on campus again and get a better feeling for what I'm capable of doing. Wish me luck!

July 20

I'm taking the week off therapy to enjoy vacation in Ocean City with Dusty's family and then relax the rest of the week.  It was my fourth summer trip with them- they go to the same place, same week every year. Unfortunately, they book the place a year in advance and for this trip, it was before I got sick. So...we were on the third floor. Lucky for me, I had Dusty and his brother plus two firemen in our crew and going up and down the stairs was no problem. We did, however, agree to get a first floor place next year, just to be prepared. How awesome would it be to not need it, though? Guess only time will tell.

I talked to a guy from KKI a few months back and told him I was coming to OC. He gave me the best advice and said to reserve a beach chair from the convention center. You can only have it for three days, but it was a life saver. And, it just so happens that we only stayed for three full days since Dusty isn't taking the whole week off work. All I did was tell them which days I wanted the chair and then Dusty picked it up. No charge or anything. Seriously, I don't know what we would've done without it (except have me whine and not get to be with everyone else on the beach, haha.)

The first day was a little bit of a struggle emotionally. Just being back at the beach reminded me of this time last summer and waves of emotions washed over me in everything we did, everything I saw, everything I thought about. How could things be so vastly different? It still just isn't fair to me. How many times did I sit in that same sand, on that same beach, and feel inadequate? Not happy with how I looked or promising myself that I'd exercise more and be even more prepared for the following year's beach trip? Well this time, I didn't care as much about how I looked, I just wanted to walk. Something so simple. Something you never think would be taken away from you. I just wanted the sand between my toes to feel normal. To watch the sun rise and set from the lifeguard chair that we weren't supposed to climb up on after hours. To take a walk down the beach, feet in the water, collecting sea shells along the way. To run around and play in the sand and water with all the kids that were with us on the trip. I only let these emotions take ahold of me on that first day though. Dusty was right, I couldn't let these thoughts ruin what could be a good trip. So I didn't. I got out of the pity pool, reminded myself of how much worse things could and actually were not so long ago, and made the most out of everything. And guess what? It worked. The sunshine and carefree lifestyle for those three days was exactly what I needed. I feel refreshed and even more determined than before (which I didn't even know was possible). 

The Timehop app that shows me what happened on this day so many years ago, etc. hasn't helped me to forget about how "perfect" things were this time last year, two years ago, three years ago, etc. While at the beach, a picture from our friend's wedding showed up and it was a picture I took of myself last year after a friend did my makeup. My hair was perfect, my makeup was flawless, and I was wearing my favorite yellow dress, getting a million compliments. It's the best I've ever felt about myself. I hated that the picture showed up to remind me how different things were or how much hell my body has gone through since then. But this morning, I did my hair for the first time in weeks and sent Dusty his "smile of the day." It's something he's made me do since first year of optometry school. It was a stressful year with lots of tears, to say the least. He started requesting a "smile of the day," which was a picture of myself so that he could make sure I smiled each day. When I took that picture this morning, he told me how beautiful I was (like he always does), but this time was different. I kind of believed him. I felt more like myself than I had in I don't know how long. I put together a little collage because I wanted to show myself the changes I've been through in the past ten months. I thought it would give me a better perspective and be something to lift my spirits when I start getting down on myself again. Once I made it, I started to think about how many other people might be affected by it. Like, how many other people struggle with self esteem or poor body image? I know the answer is a lot. So, I shared the photo on social media.

I wrote "My body has been through hell this past year and as a result, so has my self esteem and the way I've looked at myself. The top picture is exactly a year ago and probably when I looked my best (if you ask me at least). The second is the first time I stood on my feet after two months of being bedridden- definitely not looking like myself. The bottom is the first time I did my hair, but my face was still really puffy with fluid and the trach was still in place. And finally, the last one is today. It's a daily struggle, but I'm fighting to get back to where I was a year ago, both physically and mentally, but at least I'm wiser and stronger now. Slowly, but surely I'll get there 󾬕 #nevergiveup #sci #recoveryyear"

The response was overwhelming...not only did I have over 200 people "like" the post, over 40 people comment sweet messages, but I also had friends text me to tell me how beautiful, strong and inspiring I am. I wasn't looking for compliments or anything like that, but I feel like it's important for people to know that everyone has doubts or feels inadequate sometimes. I was never the girl that needed reassurance or lacked confidence. I was the friend that had to build others up and show them their worth, thinking it was so wrong that anyone wasn't able to see their own worth. You'd think after all I've been through, I'd feel even more confident in myself, not start having insecurities. I'm glad I stepped out of my comfort zone though...I not only feel better, but I hope that being vulnerable like that may have helped someone else.

July 15

I was too busy trying to update everyone on paintnite and why I've been MIA (and then venting and off on a tangent) that I forgot to mention how great therapy was yesterday. We've been trying since March, but Stephanie was finally able to come with us to KKI. We went home Wednesday for paintnite and then back to Baltimore Thursday morning-Friday afternoon. Everyone from KKI talks about how it's their dream job, so I was dying to have Steph check it all out. 

I started in the pool with Courtney. We were in the big pool, so we weren't able to walk on the aqua treadmill. It was okay though because I still have a lot of core and back strengthening to do. We did a lot of reaching exercises, then got into tall kneel. I used the water walker and "walked" on my knees. Courtney was behind me, so I asked how much she was helping and what she was doing...she said "nothing." Apparently all she did was help with placement, which seemed crazy to me. I joked that maybe I'll just start walking on my knees, then graduate to on my feet. 

I did the Thera-stride in the afternoon and Dennis thought it went smoother than usual. I was happy he said that because I can never tell...having someone on each leg, "walking" you never seems smooth, if you ask me. 

On Friday, my only real appointment was with Vicki. Steph always likes when therapists/trainers work me hard, but she may have changed her mind a little when Vicki made her my workout partner during our session, haha. Our arms and abs were burning!!! But by the end of it all, we talked about going to Target to get the equipment so we can repeat the workout at home. Workout buddies are always a good idea and great motivation!