RSD/CRPS 4 a Cure

I hate when people say things like this to me. These past few days have been hell. Literally. I have gotten just about 0 sleep in the past 3 (now going on 4) nights, I’m having severe hot flashes— my skin literally feels like its burning off my body to the point where I have to take a cold shower, and my eating has been awful because I have no desire to eat. RSD is an awful disease. No matter what I do nothing seems to help. *sigh* everyone keeps telling me it will get better and we know that I am in the homestretch of this pain flare. 1-2 more days and it should settle down again but it’s hard to remember that. But we have to have hope. Today I was at therapy and told my coach, “if I’m gonna be in this much pain I want there to be a good reason for it. So I put my pointe shoes on and have myself a reason haha. Im praying it does end soon because if it doesn’t… Well lets just say I won’t have enough spoons. I swear I’m losing spoons by the second. For all of those without RSD please don’t take life or sleep for granted, because u don’t know how good u have it till its gone. Btw thanks to @frisbeegirl123 and Jared for keeping me “sane” these past few days. I love u guys and thank u 😘 #rsd #crps #rsdcrps #rsdsucks #butyoudontlooksick #losingspoonsbythesecond#thisgirlisonfire #rsdcrps4acure #hard #days #make #champions #rise

In my body is a burning flame,
Where Satan plays his fiery game,
I have this insane desire
To out out this never ending fire.
As I feel trapped inside this cage,
All I can pray for is a change.
With hope that in all this pain—
The fire will someday be tamed.
When I dance it’s as if I fly,
Away from the fire that doesn’t die.

~The Fire That Doesn’t Die

I wrote this for English class and right now feel like I’m trapped inside this never ending fire. I had a lot of school work and was extremely stressed and am now sick without a voice and haven’t had the energy to workout. but i have amazing friends and had a great weekend even while being sick. And as hard as sickness is and even tho I’m complaining at least I can still dance. And attempt to fly away from the fire that doesn’t die. #poem #english #rsd #crps #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #inspiration #motivation

This is probably one of my favorite quotes. Today as I was doing my normal 3 min plank, my body was really fighting me. I have had very little energy all day but knew I had 4.5 hours to teach tonight and needed to do my plank first- or else I wouldn’t have any “spoons” left after. I was about 1/2 way through my plank when my body started shaking and I wanted to give up. But this quote inspired me to keep going. My body already hurt- fact 1. I knew that I could do a 3 min plank- fact 2. So I kept going and dropped to the floor when I hit 3 mins— but I did it, I was already in pain so what was 90 more seconds going to do? This week during therapy go that extra mile because that is when it really counts- your already in pain so why not get the satisfaction of completing a goal? 😉 #RSD #CRPS #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #inspiration #motivation #dont #quit #makeitcount #workit

I honestly agree with that statement. Sometimes we let our “limits” define our best- in order to beat this disease we have to go-over, above, and beyond our “best”. To this day I struggle comparing what my best used to be and what it is now. There are times when I can’t concentrate on a test or get a dance move because my body burns so badly but it finally got to a point where I was like “well I may never be where I was before—but I am going to work very hard to be as good as I can.” In dance if I can’t get a move, it just fuels my fire to work harder. I will do whatever it takes to beat this. Because when you give everything to overcoming the RSD, you are doing whatever it takes and once you start doing whatever it takes… You are now and only now reaching your best 😉 #rsd #crps #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #inspiration #motivation #do #whatever #it #takes #makeitcount

😱😱😱Yupp! I’m wearing flip flops!!!! I haven’t worn flip flops in about 2 years and today I am really challenging myself to wear them for an hour. I started at 2:25 and I have been sitting, walking, and will be driving to The dance studio all while wearing these😝 this is alot harder than it seems but if I don’t push the RSD it will push me. This really hurts but I will push through!! Btw ignore my ugly feet… I’m a dancer hahahaha #flipflop #challenge #RSD #CRPS #RSDCRPS #rsdcrps4acure #rsdsucks #iwillbeatthis #makeitcount #inspiration What did you do for therapy today?

For those of you who don’t know my recital was last night… And I made it through!!! I was still partially injured and am not feeling to great at the moment but am pushing through. Today I started off season training. I made this off season training calendar to help keep me motivated all 128 days. This started today and goes through Sept 8th. Then September 9th I start my senior dance season 😱😱 crazy I know! How do you all plan to stay motivated in therapy. This week I am continuing in flip flip therapy and also am going to start the process of learning how to swim again!! Little but nervous but I have an amazing coach who I know will support me and amazing friends who will support me ( @cami_moy3517 @frisbeegirl123 ) what are all of your plans? #RSD #CRPS #rsdcrps #rsdcrps4acure #summer #training #push #it #rsdsucks #inspiration #motivation #makeitcount

I love this quote because it holds so much truth. We can either look at our lives with RSD as a curse or a blessing. See most people have unlimited amounts of energy in their day (aka spoons) and we have limited amounts of spoons. We can either choose to compare our “lack of spoons” with others and feel terrible about ourselves or we can plan out each use of each spoon so we can spend every minute to the fullest. I am lucky, so many people waste spoons everyday and I don’t have spoons to waste so I get to spend every spoon,as I said before, to the fullest. Yes there are days when I am really upset and angry and frustrated with this disease. But I can’t change anything by just thinking about it. I have to put my plans into action. Are you going to use your spoons to the fullest? It mope around wishing for more spoons? I say this knowing that somedays I am jealous and envious of others energy but regardless that won’t change anything so I might as well use my spoons as best as I can ☺ #RSD #CRPS #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #inspiration #motivation #agree #or #disagree?

This question makes me think so hard. It makes me question how hard I’m working in therapy. I haven’t started touch therapy but I wonder if I knew for a fact that it would work if I would just willingly jump into it. Do you guys agree? I mean I don’t exactly know what to feel while posing this question. Do you? #rsd #crps #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #inspiration #motivation #question #never #give #up

Therapy hurts. That’s a fact. Today I started therapy with flip flops. I haven’t worn flip flops in 2 years. Ya it’s going to hurt. And it is going to be hard but it has to be done. Why? Because I know that I can beat this disease and not just in the big things but in the little things too. What are you guys doing for therapy? What are your goals? #RSD #CRPS #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #inspiration #motivation #therapy #perseverance #flip-flops

I love this saying. Even when therapy gets hard- the true fighters get up when they feel like they can’t. And that is amazing. By the way thank you for all of your prayers and emails! I am finally feeling better. Not completely but mostly. Fevers have been gone for 6 days now and I got my voice 1/2 back on Tuesday. Also we as a RSD community need to be praying for everyone injured in the Boston bombing. My prayer is that none of them get RSD/CRPS from this tragedy. Hope you all are well and stayed safe. #RSD #CRPS #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #inspiration #motivation #champion #finally #back #online #prayforboston