February 14, 2017

I've had a lot of people ask me how therapy and my recovery is "actually" going. I know it's easy to get wrapped up in social media and maybe perceive things as a certain way...plus, it's so much easier to post or talk about the good things that happen and not necessarily even mention any downfalls or low points. So, I guess I have some explaining to do. Also, I know some people maybe not have been following my journey the whole time and I want to catch everyone up at the same time.

After a whole year of not knowing what had attacked body and rendered me immobile in a matter of five days (in September 2015), my doctor at Hopkins was finally able to give me some answers last July (almost a year later). He said it was more than likely a mosquito borne virus that my body had a one in a million auto immune response towards, basically attacking itself and resulting in inflammation of my brain and entire spinal cord. My MRIs in August pretty much left him speechless. I still remember the night he called with the results. He told me that he looked at the scans, then looked again...and actually had to look one more time to be sure, but there was absolutely no damage on my scans. He thought for sure there would be something in the brain from the severe meningitis, but nothing. There's no damage to my spinal cord either, just atrophy that he described as "weakness." When I saw him this past December, my injury level had improved from T4 to T10 (in just five months) and he said my next goal was to take steps independently with a walker. I can't even begin to describe the feeling I had when he told me that he expects me to have a full recovery. This doesn't mean I'm going to be walking this week or even this year necessarily, but it's going to happen. And that's what I have to remind myself of on a daily basis. 

The main thing I have focused on during this journey is that there has been constant improvement. I always hear other patients talk about hitting a "plateau" or a period of time where there is no progress. Honestly, it has scared me ever since I got sick. I feel like if I hit that point, I'd be in such a rut. Yeah, I'd still be determined, but I definitely think that would take a toll on my positive attitude. And that's another thing people ask me about--"how are you always so positive?" or "you're always smiling!" What other choice do I have? I guess I've always been like that because I know any other kind of attitude is just going to continue to send me in a downward spiral, but I haven't really had to deal with any kind of depression from lack of improvement because there has been continual progress. It's not always noticeable on a day to day basis, but when I look back, it's still a steady incline, nonetheless. I just have to take one day at a time and give it everything I have...and that's exactly what I've been doing. There aren't really any days off...and it's exhausting, but when I look back at old blog posts, videos, or pictures, I know all the sweat (and sometimes tears) are so worth it. 

Like I've said, I basically had a cold that was sucking all of my energy for the past four weeks. I wasn't sleeping at night, I was constantly coughing, and just getting myself out of bed made me feel like I had completed a full therapy session. Regardless of how awful I felt, I still got up and gave each day 100%. Somehow, therapy kept getting better (and somehow, I still couldn't sleep even though I was so tired by the end of the day!) Luckily, I'm finally over all this junk. Dr. Kozlowski gave me a different antibiotic when I saw him on Friday for a routine blood work visit to check my thyroid and electrolyte levels (like we do at least every three months) and I got a prescription for cough medicine that has me finally sleeping through the night. I rode the bike at home yesterday and I think it went the best it's gone...my resistance stayed pretty high (making it harder for me to pedal) and my power increased (meaning that I was doing more work that I usually do). I still haven't done too much standing at home in my standing frame because all the medicine is making my blood pressure drop when I stand, but I figured a good session on the bike was a nice start. I also saw Dr. Busch (my new chiropractor that I absolutely adore). He's so smart and I learn a lot with every conversation we have (plus, I love hearing stories about his time in Rio with the paralympians). He's done some deep tissue massage type work on my shoulders and upper traps because they are always so tight...I think it's a combination of my posture when I'm sitting (something that I've been working on, but my abs just aren't as strong as they once were!) and the fact that I use my arms with everything I do, so those muscles are constantly in motion. Starting my week by seeing him both helps me recover from the week I've had and get ready to start a new one. This week, he also looked at my ankles because I had a therapist tell me one of my ankles was out of alignment last week...something about the bone on the top of my ankle was misaligned due to positioning when sitting and just not being as mobile on my feet as the average person. I'm glad I went because my shoulders and neck don't feel as tight and I now know that my ankles are in good shape to do some more gait training this week. 

I was looking forward to getting to therapy this week because I have done well regardless of how run down I've felt, so I thought that me feeling better would have to reflect in the gym and in the pool. The pool went well this morning, not great in my opinion, but good. I did some standing, tall kneel walking forward and backwards then sideways, and finally some walking. I've had better sessions, but it was still good (especially the tall kneel work). There are just some mornings that my legs have more "tone" and the spasms and tightness kind of get in the way of whatever exercise I'm trying to do. It makes me work twice as hard, as well as the therapists that are with me. It wasn't too bad this morning, but I still thought it was kicking in a little bit. Overall, I was happy (not thrilled) with my performance. But to be honest, I'm my own worst critic and I'm always looking for improvement and thinking things could be better, so I'm probably not really the best person to ask, haha. I got a quick shower and went to the wellness gym so I could spend some time on the bike before lunch. I like doing things like the bike and stander outside of therapy because I don't see any reason in taking up my therapy time to do those things, especially since I do them at home on my own time anyways (why would I need to waste time that my therapist and I could be doing other things that I don't get a chance to do when I'm not in the main gym?) The bike went even better than it did yesterday. It took some time working out the technical difficulties (I had to switch to two different bikes and have my feet strapped in because the velcro wasn't tight enough to hold my feet in place), so I didn't get a full hour in, but the 40 minutes I did spend on the bike were well worth it. My schedule is pretty routine-- Tuesdays I do the Thera-stride with Dennis (on the treadmill with a harness and a person on each leg, helping me walk) and Wednesdays are for the Ge-o with Quyen. I didn't have quite as much tone on the thera-stride as usual, so it wasn't too bad. Sometimes, my legs do pretty much the opposite of what we want them to do and no only am I sweating, but each of the therapists working with me get their workout in for the day. I've had better days, but I've definitely had way worse days on that machine. I did, however, do a good job standing. They lowered the body weight and had me supporting more of my own weight (instead of the harness), and I was still able to stand straight, shoulders back and butt tucked in. I was even supporting my own knees for most of the time. I usually need a little knee support when I start standing and then can support them on my own, but my muscles are quite strong enough to hold it for very long. So much goes into standing! No one ever thinks about the little things, like how many muscles are working when your standing...no even walking, just standing still. So, one of my goals is to work on independent standing with the walker. If I can do this, we can graduate to walking or taking steps with the walker, but I feel like I need to break it down into small goals...one thing at a time. After the thera-stride, we tried to do some walking over ground. I still had the harness on, and this time, Dennis left the top half on because he wanted to try walking without the walker in order to really focus on my legs and not have me fully rely on my arms and pushing off the walker. I've been walking with no upper body support and doing really well, so I was thinking this would be way easier--I shouldn't have to work as hard because I have more support from an extra harness and I was feeling so much better now that my cold is almost gone. Well....I don't know what happened, but it was awful. I'll warn you now, I'm probably exaggerating, but I think it's the worst 20 minutes of therapy I've had...like ever, at least that I can recall. I had a different tech at my hips that Dee, who usually works with us, so maybe that was the difference...or maybe I was just tired because I'd already spent four hours in therapy. I don't feel like my legs were moving at all and I wasn't really progressing forward. I felt like my arms were doing way more work, when it should have been the opposite. I think Dennis could tell that I was working really hard and only getting more frustrated, because he suggested that we forget that ever happened and go stand in the parallel bars. I think I redeemed myself there. He wasn't giving me much support at the hips and hardly anything at the knees and I was able to pick my hands up off the bars for a few seconds at a time. A couple times, I was even able to keep a good posture and lift both hands up. I played volleyball with another therapist and actually kept one arm in the air the whole time we volleyed back and forth instead of grabbing the bar between each hit, which is already an improvement from last week. So, I guess the day really wasn't that awful, but I still just couldn't shake those 20 minutes of poor performance. It's the worst feeling knowing you're working as hard and you possibly can and not getting anywhere and that's how I felt trying to walk from one end of the gym to the other. 

When Mom and I got back to the house we stay at while in Baltimore, she started talking to another woman in the lobby. A woman by the name of Tanya, whose three year old daughter has been going through leg lengthening procedures at the local hospital here. They're from 8 hours away and the mom has had a really hard time watching her little girl go through something that seems so painful. Mom told her that it doesn't get much better when your child is 25 either, haha. She said when your child starts feeling down about therapy, it's hard to pick them back up. You just have to focus on the positive. Mom told her about how I went on and on, saying I had the worst day of therapy ever when really, it was only 20 minutes...everything else went well--the pool, the bike, the thera-stride, the standing. It's all about perspective. Tanya stopped feeling so down and said how much that conversation helped her. When Mom told me about her conversation, I got to thinking...maybe I had to endure those 20 awful minutes so that she could tell that story to Tanya and help her to help her daughter. Maybe things really do happen for a reason and God makes me go through those downs or low points in order to help someone else or in order to make the high points feel that much sweeter. 

So yeah, therapy and my recovery are going well. It's a steady incline, but it's not fast by any means. I still have bad days. I still get frustrated. I might cry here or there, but improvement is improvement and I think that's all I can ask for.