419电影网I am a 23 year old SHSU graduate who has been battling RSD/CRPS since 2008. I have a neurostimulator (aka an SCS) and that has been helping so much! I'm here to share my story and communicate with others who are going through the same thing.

Tuesday, May 20, 2014

Traveling with RSD: Walt Disney World (Orlando, FL)

Last week, I went to Disney World with my family for a week. I was a bit nervous due to horror stories I had heard about traveling with RSD (many claimed that being on an airplane made the pain worse and caused swelling). Not to mention Disney World is huge! Getting around the parks was going to be a challenge.

1 - Walking around the airport and the resort would end up hurting my feet.
2 - That the airplane would cause me pain and I wouldn't be able to take care of it.
3 - That I would be in pain the entire week, slowing my family down.
4 - That I wouldn't be able to participate with my family in the activities at the parks and resort.

Good news!

Check-in and security at the airport were so easy! I got a wheelchair and everyone was really nice. Due to my SCS, I was unable to go through the metal detector and received a pat down instead. It was done by a female employee, whom they specifically asked for (I guess to make me feel more comfortable). She touched me with the backs of her hands, and there was never a point at which I felt uncomfortable. She explained everything to me and was very nice. I really don't get why everyone is so upset about getting pat downs. I've never had a problem. Ever. They are just doing their job. Nothing inappropriate occurred.

Anyway, like I said, the wheelchair service was great. Getting on the plane was a breeze. I was allowed to pre-board due to my disability, so I could choose a seat with more leg room that was comfortable for me. This also allowed me to be able to sit next to my sister and niece. The crew of the flight were so nice and even gave my niece a coloring book to play with during the flight.

There was no pain on the flight. Take-off and landing were great. No pressure changes that affected swelling. Nothing. I was pleasantly surprised.

When we arrived, I received wheelchair service again, all the way to the buses outside. Disney's Magical Express was a very comfortable bus, with TVs and soft seats and (THANK GOD) seat belts.

I picked up my scooter when we arrived at the Art of Animation resort. All I had to do was sign my name and show them my ID. Then they brought it out to me and I was on my way with my family. That scooter had some punch to it! It was fast! By the way, the service my mother used to reserve a scooter for the week was Best Price Mobility.

The scooter was pretty easy to maneuver and I was able to change the top speed just in case my niece wanted to mess with the handles. This prevented collisions. LOL!

The resort was unbelievably accommodating. We didn't have cell phone service in our room, so an employee showed us to 3 different rooms to see if they worked any better. Unfortunately, they didn't, but it wasn't that big of a deal so we just dealt with it. It was still a nice gesture, though.

Having that scooter proved to be the best idea! Getting onto the buses to the parks was super easy. I got to board first and the bus driver secured my scooter with hooks. Then my family and everyone else could board. No one was rude or impatient with me. It was awesome!

The parks were SO accessible. Often times, I didn't have to wait in a regular line to get on rides. I had my own entrance - the disabled entrance. That line was often very short or nonexistent. I got onto rides quickly and had minimal wait times! My family was also able to wait in the disabled line with me so we could all stay together. It was so great.

Disney went above and beyond to accommodate those with disabilities like myself. They ALWAYS boarded the rides first and were taken care of quite well. No one had to wait in long lines that would cause pain. It was so awesome! I felt so included and not like an inconvenience at all! It was like I was just like everyone else. No barriers for me whatsoever :)

The resort was equally accessible. Despite the fact that I ran into the door one night (oops), it was easy to get around. The pool was huge (it was Finding Nemo themed) and Emma (my niece) LOVED it.

Best Price Mobility was a fabulous company. I noticed later on in the week that my scooter would not charge, so I called the company while we were at Epcot. They met me the next hour IN THE PARK with another scooter for me, free of charge. It was great and so convenient! I couldn't be happier with them.

All my worries disappeared on this trip. Southwest Airlines, Best Price Mobility, and Disney took care of everything and made me very comfortable. I was so happy with how nice and accommodating they were.

So here's some advice to you: Go to Disney World! Don't feel like you're going to miss out or slow down your family. They will do just about anything to help you out. They want to make sure everyone is happy and having a good time. They take their jobs very seriously.

They have a section on their website specifically for people with disabilities. It even has disabled guides for every single park. Click here to view the webpage.

WHEELCHAIRS: Available at the parks as well as through outside approved business that deliver it right to your hotel/resort. May bring your own as well.
SCOOTERS: Available to rent at the parks (must stay in the parks) or through approved outside businesses that deliver your scooter straight to your hotel/resort! May bring your own as well.
WAIT TIMES: Low to non-existent, fast passes were very easy to use as well
CONDUCT OF STAFF: 10 out of 10, always nice, always helpful

Extra tip: Get a scooter with 3 wheels instead of 4. They have a much better turning radius!

Happy healing!


Friday, March 14, 2014

The People Who "Get It"

One of the most surprising things I experienced after being diagnosed with RSD was ridicule.

I had no idea that people really actually ARE this mean.

I thought that this stuff only happened in the movies, but unfortunately I was dead wrong.

Scenario 1:

I was on crutches, coming back to my college dorm after class. I had to pass by the pool area on the way home. As I neared the hot tub, I noticed a group of guys pointing and laughing at me. One of them shouted out, "Hey, crutch girl!"

On one hand, his comment was, at best, unoriginal. It wasn't even funny or creative. Yes, I am a girl. Yes, I am using crutches. Good eye, there, buddy.

On the other hand, no matter how stupid the comment was, it was still hurtful. It was implied that there was malice in his comment and the fact that all his buddies laughed along with him made it worse.

I just ignored the comment and continued on my way.

Scenario 2:

It had been a bad day; I was having a pain flare. It was Sunday and I had been out of town, visiting my boyfriend at his university.

I had planned to drive home that afternoon, but my RSD had other plans for me.

So I decided to rest and then drive home when I felt okay enough to do so.

My parents asked if I needed them to come pick me up, but I said no and told them my plans.

My boyfriend was beyond accommodating. He went to get me lunch, he let me watch his Netflix, he sat there and held me while I cried. He even carried me out to my car when it was time to go. Unfortunately, once I sat down in the car, it flared again.

So we went back inside.

I told my boss what was going on and that I probably wouldn't be in the office on Monday. He was very understanding and told me to keep him updated on the situation.

As it got later, my parents got angrier. My mother texted me asking why I wasn't home yet and I explained it to her.

She flipped out.

I told her that I had everything worked out with my boss but she refused to accept that answer.

An argument ensued... one where I stressed to her the value of my health over not missing a day of work.

She didn't seem to agree.

She then drove up with my father, who was also just as angry. My boyfriend continued to be amazing and make sure I was okay.

Once they arrived, James (my boyfriend) carried me outside to the car and put me in the back seat.

My dad commented on this, saying, "You shouldn't make him carry you. That's such an inconvenience. That's why you should carry your wheelchair around."

Frustrated, I barked back, "I'm a human being, not an inconvenience. He knows full well what being with me means and he has told me that he is prepared to help me whenever he can."

My dad said that I should go back to using the wheelchair, but I disagreed. I hadn't used that chair since 2011, and trust me - I did not want to go back in it.

I told him this and he started to laugh. HE STARTED TO LAUGH.

He just said, "You really don't like that, do you?"

I told him, "Of course I don't like it! What's wrong with you?! I've come so far since then. You don't understand what it's like to be in a chair. People look at you differently. Every day tasks are so much harder. You have to ask for help. I don't want that life again. I want to walk."

As much as I tried to reason with my parents, they simply did not understand.

I have to make sacrifices to make this work. I have to utilize my spoons in an effective manner.

If that means I have to take a day off of work to rest, then so be it. I try my best and that is good enough for me.

Monday, February 3, 2014

Interesting USA Today Article about Chronic Pain

USA Today - Chronic Pain

Go ahead and check it out!

It is true that physical therapy can do a lot for chronic pain sufferers... but the trick is that you do it right.

Too much exercise or the wrong type can end up being more damaging than helpful.

The best plan of action is to discuss your options with your doctor before gallivanting off to work out.

I used to be a runner myself. I loved it. Especially when it rained, you could find me outside, jogging to a friend's place or nowhere at all.

It was calming for me.

Once I started experiencing chronic pain, running was taken away from me.

I still miss it today, but I have found other ways to exercise.

I have one of these under my desk at home:

Four anti-slip rubber pads prevent sliding and protect floor. Included on all units. Safe and gentle form of low impact exercise. Stimulates circulation. Ideal for toning leg and arm muscles. Tension can be adjusted. Attractive silver vein finish. Compact for storage and transport. Comes completely assembled. 
You can find these peddlers here

Low impact exercise can be a great alternative to something like running.

Since strengthening the muscles in my right leg was a priority (I have nerve pain in my right foot and tend to favor my left side), this peddler did exactly what I needed it to do.

I hope you can find something that works just as well for you!

Thursday, December 26, 2013

My Graduation and the People Who Made it Possible

 August 2009 - The first year of college for me at UTSA in San Antonio, Texas. I had NO IDEA what to expect once I got on campus, but I was definitely ready to move on from icky high school.

I wouldn't have even gotten to UTSA if it wasn't for my mother. She is the one who pushed me to finish all of my college applications during the summer of 2008. Yeah, it felt like a complete drag back then, but then I didn't have to worry about apps during my senior year! It was really in my best interests, so I'm thankful for her nagging me to do it! Haha!

Anyway, I arrived at UTSA and my parents and sister helped me to move in. Let me just say how damn supportive my family is. They are there for me through it all. No matter what. They are ALL amazing, strong, loving people and I love them so much.

Here are some highlights from the move in:

I felt pretty lonely there my first year. I was alone a lot because I was in a new city where I didn't know anyone. I was also still figuring out what was wrong with my foot.

Once I started to create my friend base, things got better. I earned a 3.9 GPA my first semester! :) I was one happy roadrunner!

Of course, as I started to get more involved on campus and gained friendships, my grades balanced out with my social life.

My feet started to get worse and I was in and out of a wheelchair/crutches.

As many of you know, I met a boy in 2010. I won't even say his name, but he is the reason I had to leave San Antonio. My parents, despite the horrible situation, stuck by me every step of the way. My sister did the same. She even stood up for me when I couldn't stand up for myself. I couldn't have been luckier.

My friends, however, did not stick by me. People who I thought I could trust, who had been my "friends" for our entire lives, ended up stabbing me in the back and leaving when it got hard. I couldn't believe it. I had lost the people who I thought loved me most. I was devastated. People were ashamed of my pain and didn't want to hear about it and it hurt so bad. Because I NEEDED my friends - I needed them more than ever during that time. Nonetheless, they deserted me and I felt so alone. I only had a few people who stood by me, like Lexie and Ashton.

I was a wreck. My boyfriend sucked the life out of me. I was always unhappy, always angry.

I had lost my sparkle and I was afraid. I didn't understand how he could claim to love me when I'd often find myself hurting. He'd pin my wrists to the wall and scream in my face. One day, with the lights off, he straddled me on his roommate's bed and started to strangle me. He leaned down to my face and told me, "I could kill you and drag your dead body out there right now in front of everyone and I wouldn't care."

I thought I was going to die. Why he let me go, I'll never know. I was having so much trouble coping. Thankfully I met a really cool group of people in the hot tub one night. We had a bubble party! Haha! They are in the photo below.

Unfortunately, they ended up moving and I of course felt better moving home. I didn't want to stay in San Antonio after all the crap that had happened.

I had to rebuild from there. Getting out and going home was such a relief. I felt better, not surrounded by memories of a past that had slowly destroyed me from the inside out. Being at home with my family made me feel safe and wanted, and I slowly revealed to my family what had happened to me back at school. It was so unbelievably hard, but it was an issue that had to be confronted.

I won't lie and say it was an easy process, telling them. It wasn't. It hurt to watch my mom's face fall, knowing there was nothing she could do about what had happened to me back then. But we could rebuild.

So there were my parents, behind me every step of the way, urging on my progress, being there for me no matter what. Being the best parents in the world. I cannot thank them enough for not deserting me or being ashamed of me, like some of my "friends" had done. They are amazing parents. Along with that, they were there for me uring my RSD diagnosis. I got my nuerostimulator implant September of 2011 and started walking again! I was so happy! I could tell that my family was, too. They were so supportive.


Back to Summer of 2012. Enter Trey. We had dinner one night at Chili's just to catch up because we hadn't talked in a few years. We had a great time catching up and he invited me out to karaoke with his friends that coming Thursday. Little did I know that the people I would meet there would end up being some of my best friends.

That summer - I needed it. I needed those new friends. I needed to regain my confidence, my self-esteem, my happiness. And due to the presence of those incredible people in my life, I did. I cannot thank these people enough for restoring my faith in the human race and the realization that love is not a myth - they show me love EVERY SINGLE DAY. These people know the true meaning of friendship and try their hardest to be good people. And they succeed :)

Let me talk to you about this girl right here.

Rachel became my best friend that summer. We balanced each other out in such great ways, and ended up learning from each other's strengths and weaknesses. She taught me to always consider the other side of a situation and walk in another person's shoes before judging them. She has been there for me through good times (JAMBA JUICE) and bad times (panic attacks). She has showed up at 2 AM to eat oreos with me, even after finding out that we could only dip them in a milk bottle for so long until our hands couldn't reach anymore. XD She is the best and this girl deserves so many wonderful things in life!

Then of course my parents urged me to go back to school. Oh man I wasn't sure if I was ready... I was terrified of failing. But, with the help of my mom and dad, I ended up enrolling last minute at Sam Houston State University in the fall of 2012. It was hard to get everything in order, but we did it!

And did I mention how freaking lucky I was to get the LAST ROOM AVAILABLE IN THE ARBORS?! I was paired with a random roommate named Alex Hansen. Mom was worried she'd be weird or crazy or a hooker, but holy moses - she was none of those things! Well, she IS weird, but it's the good kind ;)

Alex is one of the main reasons I am who I am today. That girl knows how to love! She is so kind, gentle, and generous and always puts others before herself. Being her roommate was an amazing experience. Through that school year, we grew so close so fast and I really enjoyed going to school and living with her! Not only did she help me tremendously through recovering from my abusive relationship, she always was there with a comforting word or a hug no matter what time of night it was.

Christmas was a happy time. I got to see Emma, my little niece! :)

Emma can ALWAYS put a smile on my face. She knows immediately when I'm feeling bad or when my foot hurts and always tries to make me feel better. She is the sweetest little girl I have ever met and I adore her. She has changed my outlook on kids and life overall. She has taught me to be kinder and gentler and to, above all else, be unapologetically myself!

The new year promised new opportunities and a new outlook. I was ready to get things DONE! So I started making lists - TONS OF LISTS. In fact, I currently have 20 lists on my desk at this very moment. Haha. I enjoy being organized and knowing what I need to get done.

I got in gear and started getting super serious about my future. I took my projects seriously. I was taking a Practicum in Publishing class and our final project was really cool. We had to design a mock literary journal along with a proposal and a ten minute pitch in our prof's office as if he was a possible investor. I was nervous but I did it and loved it! When I asked my professor about my project, he sent me this:

Needless to say, I was beyond thrilled. I couldn't be happier. I worked SO HARD on that project and it was really important that I did well on it. Hooray for getting an A!

The summer was BUSY. I mean EXTREMELY BUSY. Between planning my sister's wedding, summer classes, and picking out graduate schools, I barely had time to breathe! But I got to spend time with the people who mattered most and that's what counts :)

This guy right here ^ He ended up surprising the HECK out of me when he showed up at my house with a bouquet of roses. I did NOT see that coming. But I was so glad that he did :) Since we first met in 2012, Chase has been a great addition to my life. He makes me laugh so hard that I cry, he respects me, and he is understanding.

I also met an amazing girl that would end up being one of my best friends: Laura, my wifey. It all started with an awkward meeting during a game of Spin the Bottle at Vintage. She basically told me that her best friend wanted me. LOL. And this is how we became friends XD

After that was my last semester of college! Holy moses! :) I had a new roommate (Ashley Sanders) and I was ready to finish strong!

Ashley and I being weirdos after a hilarious trip to Sonic :P

Special thanks for surviving a HORRIDLY BUSY, INSANE semester goes to: Ross Irvin and James Ross.

We met in August of 2012, and since then Ross has always been an awesome friend. We wrote together, sang together, drank together, etc. He stays up with me until 3 AM when I'm having panic attacks or pain flares and makes sure that I'm okay. He takes me to movies for free because he's manager and we're best frands like that (BE JEALOUS OF MY VIP STATUS). But above all else, he's always there for me and he's an incredible friend. He constantly reminds me to be myself because myself is AWESOME. He's awesome, too :D

This kiddo right here is James Ross. We have chocolate/wine/horror movie nights and discuss morbid jokes that other people won't laugh at. We are screwed up in the head and PROUD OF IT! I enjoy our gory psychopathic conversations and how he laughs at my messed up comments instead of being disgusted by them. We are quite a team and I really have appreciated his friendship. I'm gonna miss him when I move out of Huntsville! *sobs*

Here I am today. A college graduate with a B.A. in English! I really am so grateful to my loved ones, employers, professors, and classmates that have supported me over the years. I wouldn't be who I am today without any of you :)

Wednesday, August 7, 2013

The Question

The question I constantly ask myself is: Is it worth it or should I rest? Many people never have to ask themselves this question, but I have to every single day.

This is normally how it goes:

I get up and start moving around, brushing my teeth, taking a shower, getting dressed, etc. That leads to me taking my pills (Omega 3-6-9, B6, B12, and C) and doing my morning social media check. By the time I'm ready to leave, usually that's when my pain begins.

At this point, I am usually sitting on my bed, thinking, "Should I cancel on dinner plans for tonight?" I weigh the pros and cons and come up with the following arguments.

1. No way! I'll be fine.

2. Nope. Would you rather go out and have fun and make memories, or sit at home, bored and wishing you were out having a good time with your loved ones?

3. No; I can rest during the day and move some things to the next day (which goes along with the spoon theory. If you haven't heard of it, here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)

4. Yes; I need to rest. Taking care of myself is so important. If I rest now, I'll be able to have more fun later.

If you'll notice, I have 3 nos up there and only 1 yes. Does this mean that I value socializing over my own health and well being? Not necessarily, but part of the "no" is definitely denial.

I often do go out when I know that I shouldn't. I'm stubborn, that's just me... my mom will agree with me on that one! Haha!

Sometimes I get so angry with myself for having this disease and I want to prove to the world that I am strong and it doesn't affect me. But the truth is... it does. When I'm having a good day, I'm on cloud nine. Sometimes I forget about RSD. I'll go sing karaoke with my friends or go out to eat dinner with my best friend or hang out with my niece, and the world is my oyster. But when I get home and wake up the next morning, I know that I did too much.

So what's the secret to getting it right?

I'm not sure, honestly.

My number one focus is living life to its fullest. The trade off for that is foot pain.

The thing is: there is no concrete way of knowing what my pain level will be the next day. I can take preventative measures, but that still won't really allow me to gauge my future pain level.

So tonight, when I think about whether I should go to dinner with my friend Justin... or if I should stay home... I'm going to be a bit more realistic and bring an ice pack along. I'm going to wear my Z Coil shoes instead of a cute outfit and heels. I'm going to take care of myself and compromise some things that aren't essential for one of the best things in life - spending time with a good friend.

I hope you guys will be able to do the same! Make compromises with yourself and see how much better you feel. Let me know what you think in the comments. :)


Saturday, August 3, 2013

Living with CRPS: How to Do It Right Without Missing Out On What You Love

Hey guys! Good morning! :)

Lately, I've been thinking about my lifestyle and how I often miss out on things I want to do because of my pain.

For years, I have wanted to play soccer and run again. I miss those things so much. I would totally go out and do them if it wasn't for the pain I'd experience during and afterward. That scares me.

So, I spend my nights dreaming of one day joining a soccer team and running a marathon... it makes me sad, to be honest.

But the thing is... just because I choose NOT to do those things doesn't mean I CAN'T.

If I train, if I work in little spurts, I can get there. I have a friend who also has CRPS who runs AND plays basketball, despite the pain. Such an inspiration to me that she remains so strong through it all.

Here are the things I keep in mind for planning my events:

1 - Family is the most important thing. Make them number one, no matter what.

2 - Plan events in which you can rest if you need to. Always prepare for the worst.

3 - Comfort over beauty, always. I know you want to look cute and wear those heels, but you will kick yourself for it later!

4 - Always consider your spoons. More rest now means more time tomorrow to have fun!

5 - Never neglect taking care of yourself.

6 - Don't rush. Stress will only make things worse.

7 - Space out events so that you don't feel overwhelmed on one day.

And that's pretty much it. I know it kind of sucks, living with rules, but it really doesn't feel like rules. They HELP me, and really in no way restrain me from doing what I want to do - they enable me! :)

Sure, sometimes it sucks having to cancel on a loved one, but I can spend that time resting and writing, something I adore, or even reading! There are options, and NO MOMENT IS A WASTED ONE. Learn to love every bit of life. Turn that cancelled event into a fun day by incorporating something you normally wouldn't do into it. Bored and stuck in bed? Grab a coloring book and order takeout. Unable to leave the house? Turn on Netflix and start a new series. Play with your hair. Try to cook something.

Being alone and immobile isn't the end of a good life - it's a challenge to create happiness out of misery. And you CAN do it! :) Take those moments and turn them into something fun, beautiful, and productive! :)

Wednesday, July 17, 2013

Why Me?

I battled so hard with this question for a long, long time. Honestly, I can't say that I have the answer, and that's okay.

Initially I had several negative thoughts running through my head:

1 - I was being punished for something bad I had done in the past.

2 - I was being taught a lesson about patience and perseverance.

3 - God wanted me to be broken.

All of these thoughts fueled my depression. I didn't want a lesson; I just wanted to feel better! I'm sure many of you have felt the same way. Those inspirational posters and their messages can only go so far. When you're having a pain flare, their message is muddled by the immense agony you are experiencing. You focus on what you've lost, and it sucks.

So when you battle with the question "why me," remember that it's okay to not know the answer. Having this disease doesn't make you less of a person than anyone else. Instead of thinking "why me," a question that hinders progress towards healing, start thinking, "How can I heal?"