Days 17/18

How are we more than halfway through November already??? Wow, time sure does fly. Today I’m doing days 17 and 18 of the RSD/CRPS Awareness Challenge!

Day 17: A picture of your hobbies

Some of my hobbies include baking, cooking, crafting (I’ve been sewing a lot of crutch covers lately), and writing. I also like to watch TV (especially Grey’s Anatomy and Ellen) ,read (when I have the attention span for it), and travel (when I’m healthy enough). I like to spend time with friends and family, but I also love having my own space. If I’m around people for too long then I start to become annoyed.

Day 18: A picture of you having fun despite RSD

Okay, this picture doesn’t include my face…but it shows one of the most beautiful places I’ve been. My family and I took a cruise to Alaska last year, which was tons of fun. It was challenging to be on a ship while using crutches and my wheelchair, but this excursion to the glacier was incredible. I try to make life fun, even with pain. That means going on vacation, working at drama camps, babysitting, being with friends and family, and enjoying my hobbies.

What are some of your hobbies? What do you do to keep your joy alive in the midst of pain? I’d love to hear from you!

CrutchGirl Takes NYC

I wrote a post a few months ago about a trip that I took to NYC. I was only there for a day, but it was enough to scare me away. However, my sister lives there and had been asking me to visit, so after enough pleas from her, I decided to suck up my fears and just go. Alone. To NYC. On crutches. As my health has been really declining. Smart idea? Maybe not so much, but I don’t regret going because even though I felt miserable for much of the trip, I learned a lot, spent time with both of my siblings, and even saw Tina Fey 🙂

NYC was filled with challenges. With each obstacle, I had to decide if I was going to tackle it or not. Most of the time I tried my hardest to keep going, even in the face of pain and fear. There were some moments when I just didn’t feel like I could keep going, but I pressed on through. After all, I figured I could survive anything for just a few days.

Here are some of the challenges/experiences I had while venturing to and through NYC on crutches:

• The airport: I was nervous about security stopping me because of my wrapped foot and crutches. I always think about the time when I was first diagnosed and had to fly to Florida for a funeral. The TSA Agent grabbed my tender, sensitive foot, then proceeded to squeeze and move it while I screamed in pain. Thankfully, this time was different. I breezed through security, boarded the plane first, and had a good experience.
• The Bus: I had to take a bus from the airport to my sister’s place. After figuring out how to get a ticket, I got on and sat down. A few stops later, the bus was completely cramped. I had to push my way through to get off when we reached my stop. The bus ride on the way back to the airport was worse. First, I had to stand because the seats were filled. When I finally got to sit down, a woman bumped into my leg. Thankfully, a nice guy gave me a different seat that protected my leg more. When we reached the airport, I missed my stop and had to ask the driver to wait for me to get off. If people hadn’t already suspected that I was a tourist, they definitely knew it when I had no clue what I was doing!
• Walking around: My siblings are fast walkers, and at times, it was hard to keep up. My sister was very frustrated by my slower pace, so she usually walked a few feet in front of me. She made it very clear to me that I was interfering with her usual routine, which made me feel horrible. I told her that she should be thankful for my slowness, though, because that’s what allowed us to see/talk to Tina Fey on the subway!
• Blisters: My brother and I walked about 20 blocks each way to and from Central Park on our second day in the city. This, combined with the hour or two we spent walking through the park, created some major blisters on my hand and good foot. It was hard to use my crutches for the next few days as the blisters healed, but I had no choice but to  walk through the pain. I mean, really, compared to RSD, should I complain about blisters? Probably not. But they were a challenge to work with. I ended up putting foam padding on my crutches and on my foot to ease the pressure.
• People: In NYC, there is little personal space. People are everywhere! I received lots of stares and questions about my leg, which made me feel uncomfortable at times. I am pretty used to it, but each look is a reminder about how different I am. Navigating through crowds was rough, and I was always concerned that someone might bump into me or cause me to fall.
• The Subway: Goodness, if I go through the rest of my life without ever using a subway again, I’ll be happy. My anxiety spiked every time I had to cross that small gap from the platform to the train. From there it was a race to either sit down (if a seat was available) or hold onto the pole as tightly as I could before the train took off. I only fell on one person (oops), but after that I learned how to do it right.
• Stairs: I appreciated the fact that parts of NYC were very accessible, but I found myself facing large flights of stairs more than I would have liked. There was one day when I was exhausted from walking around, and after making the journey down the stairs to the subway station, I discovered that I would have to go down many, many more stairs before reaching the train. I took things slowly and eventually got there.
• Escalators: I went to the Plaza because my sister told me they had good FroYo. Oh, and I’ve always been a big fan of Eloise, so that was pretty cool. We took the subway and walked a few blocks to get there. When I walked through the doors, I was faced with one option: take the escalator downstairs. There were no other doors, no stairs, no elevator in sight. I hobbled over and tried so hard to get on. My sister went down without me while my brother waited, encouraging me to just do it. I was terrified. Going down non-moving stairs on crutches was hard enough for me, and I was almost certain that I’d fall. I began to cry in frustration (much to my sister’s dismay–she was getting angry with me). Finally, my sister figured out that there was an elevator on the other side of the building. She wasn’t happy about it, but we went outside and around to find the alternative route of getting downstairs.

Okay, enough negativity. How about some of the highlights of my trip???

• I was able to see my sister for the first time since August.
• I got to see my brother and spend more than a minute with him. (He lives in a different state as well)
• I finally met my bunny nephew and got some bunny snuggles.
• I went to my sister’s school and met her students. I even got to sub as a parapro and help one of the kids with his work! It was fun to see where my sister works.
• My brother and I took a lovely trip to Central Park. Yes, it gave me blisters, but it was worth it. We chatted, took pictures, and simply enjoyed each others’ company and the gorgeous nature around us. The weather was perfect, there weren’t many people, and we got lots of fresh air.
• We ate some great food. Macarons, frosting shots, candy, soup, froyo…okay, most of those things are sweets. What can I say? I was on vacation! (Um, but honestly, I eat too many sweets when I’m not on vacation, too)
• We saw Tina Fey on the subway! I think I’ve written enough about this already, but it was really exciting.
• We went to a lot of iconic/famous places. It’s cool to see things on TV and know that I was right there.
• I got out of my comfort zone. Sometimes it’s good to go outside of your own little part of the world and explore new places, even if it makes you uncomfortable.
• I learned that I can push through, even when I feel like I’m at the end of my rope.

Overall, this trip was about how I had imagined it to be. I knew that there would be plenty of struggles, so my pain and fatigue didn’t come as a huge shock. I do wish I could have been a bit more prepared for some things (like bringing better shoes and more medical supplies), but for the most part, I was ready for whatever happened. New York is not my favorite place and I doubt I’ll be returning anytime soon, but I’ve realized most of my dislike for the city comes from my own problems, not the city itself.

Spring Break

I’ve been on Spring break for the past 10 days, and it has been amazing. I really feel like I’ve been home for a month because I packed so much in! This break made me realize how much more relaxed I feel at home compared to school. I don’t have to worry about where my next meal will come from, how I’ll get something that I need from the store, or loud people in the hallway as I’m trying to sleep. It’s pretty great.

In the past 10 days I went grocery shopping, had an advising appointment at my new-old school, babysat, shadowed an OT at my mom’s school, helped in my mom’s 2nd grade classroom, and had tech week for The Music Man, the show my mom was directing. The shows were this weekend and they were fantastic! I learned a lot while shadowing the OT and it really confirmed that that’s what I want to do.

With a busy, 6:30am-9pm schedule, I haven’t had a ton of down time lately. It’s been really great, though, because that means I’ve had less time to think and stress about life. When I’m at school I have too much free time and that’s when the crazy streams of thoughts happen. I think I’m realizing that having a busy schedule works for me. Sure, I do like down time here and there, but too much of it makes me feel sad and unproductive.

Now I am super exhausted from all the fun, but it was well worth it! I have to make the 2 hour drive back to school tomorrow (well, I’m not going to be the driver…I wish!) which I am sort of dreading. I’m not ready to leave the familiarity of home but I know that I need to finish the semester on a good note…and I’ll be home for good in less than 2 months!

That’s a quick life update. Busy but good. I’ll make a more meaningful post later, but for now…I’m off to try to catch some zzz’s! Hope all is well for everyone out there 🙂

 

Suffering is Optional

“Pain is inevitable…suffering is optional.” I’m sure everyone has heard this phrase before, and I’m also sure that most people have come to realize the truth in it, especially in the first half…pain is inevitable, in one form or another.

But we have a choice. We can choose to give into the pain and let it control us, or we can fight back and show it who’s boss.

While I do live with 24/7, unrelenting pain, I try not to let it steal my focus. The idea of staying in bed all day does tempt me at times, but in the end I have to realize that there is more to life than pain and, as I keep saying, I can’t do everything, but there are still a lot of things that I can do.

So, here are some of my favorite ways to kick pain’s butt and continue with my life:

• Attending school and placing my energy on studying and being alert in class, not on the fire that is raging inside (can be tough at times).
• Losing myself in the depths of a really great book.
• Writing. Here, in my journal, elsewhere…just getting my words on paper helps.
• Pursuing a degree in OT, even though I haven’t the slightest idea what my future may hold and if that will be an attainable goal.
• Getting up and out of bed every morning, even when I’d rather snooze.
• Exercising! This is a new thing that I’ve started to do again. It feels great to do my core strengthening program again and I think it’ll help out with my balance. I was supposed to continue this after leaving Cleveland in August, and I have on and off, but now I’m trying to do it more regularly.
• Traveling. I love seeing the world and all that it has to offer. Though it can be a challenge sometimes with different terrains and things like that, I love doing what I can.
• Helping people when they need me and when I am able. I love to babysit, talk to people, and just do what I can to improve the lives of others.
• Not. Giving. Up. Hope. This is so crucial. Sometimes I do waver as to whether I’ll ever get better, but I hold hope that I will, or even if I don’t, I have hope that I’ll still be able to continue leading a full life, despite the obstacles.

Well, those are just a few ways I keep my mind on things other than that 4-letter pain word. That’s not to say that I never struggle, never have pity parties…because sometimes life gets overwhelming and I forget about the good. But for the most part I try to keep the “suffering” down by doing things that fill me up and remind me that I am still capable of being a functioning part of the world.

Stay strong, my friends. And remember that we all have a choice of where we’ll place our thoughts, time, and energy. Choose life, choose joy, choose happiness. But don’t be afraid to feel those less desirable emotions and process through them when necessary…just don’t dwell on the negatives forever 🙂

Peace.