rsdcrps4acure
RSD/CRPS 4 a Cure
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  • rsdcrps4acure 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
      3d
  • shaunalk915 You put into beautiful words what all us RSD sufferers feel. This is beautiful and I pray you get some relief. My weekend has been hell also with constant flare ups! I'm 13 weeks pregnant also, so I just do my best to rest an relax during these times. @rsdcrps4acure   3d
  • 14_and_free Beautiful.   3d
  • soblondetats My weekend has been hell too! Beautiful poem !   3d

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  • rsdcrps4acure 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   1w
  • abigail_fightingcrps_cornejo I'm already in lots of pain so let me just attempt one more thing.   1w

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  • rsdcrps4acure 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   2w

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  • rsdcrps4acure 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?   2w
  • rsdcrps4acure @jraebaybay it took me like a month to wear heels again but I encourage you to push through the pain and maybe start with a low heel and just wear them for maybe 10 seconds and build on that. You will be able to conquer this disease if you push the RSD!   2w
  • rsdcrps4acure @s_t_a_y_s_t_r_o_n_g_13 thanks!   2w
  • rsdcrps4acure @fluffydino1 ya I used to do those in therapy.. Never named my feet though! are you in therapy?   2w
  • rsdcrps4acure @grace_themusic well if you want we could work together because as soon as I finish school and take my SATs (so by June 4th) I will be starting to swim again and am obviously working on wearing flip-flops. If you want to join me we can work together and encourage each other   2w
  • rsdcrps4acure @_natmassey it took me maybe a month to wear sneakers again (that's the first shoe they had me wearing) but it is possible. The biggest thing to remember and do is to push the RSD because if we don't push it then it will push us   2w
  • fluffydino1 Not anymore, but I want to get more involved with my pain clinic. One, because we have something called "pain day" at it and its SO much fun to participate in! Plus they offer scholar ships, and I'm starting high school next year (eekkk! I'll be a ninth grader in 2 weeks ) so may as well start getting ready for college! @rsdcrps4acure   2w
  • jraebaybay Thank you !!!!!   2w
  • grace_themusic Ok @rsdcrps4acure I think that'll help   2w

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  • rsdcrps4acure 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   3w
  • darkdaisies I plan on wearing my heels more often. and working on getting used to different smells.   2w
  • goddessinspired1 I plan on driving my car. I plan on enjoying life as it is never gonna change on a pain level.. #motovation #rdswarriors #crpsforacure!!!   2w
  • rsdcrps4acure Awesome! @darkdaisies and I'm hoping to learn how to drive this summer as well @goddessinspired1   1w

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  • rsdcrps4acure 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?   3w

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  • rsdcrps4acure 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   4w
  • shaunalk915 In terrified of being touched on my legs especially where my peronial(sp) nerve was crushed which caused my RSD. I hate to even shave. I don't how I would feel about touch therapy.   4w
  • sucking_lollipups_lovers My cousin is Wylder and died from a disease with no cureu can see him at wyldernation.com   4w
  • bre_warner I do desensitization therapy and my ankle is not so sensitive anymore. It still hurts while they are touching you but once you've done it for awhile it won't hurt as much. Hope this helps.   4w
  • rsdwarrior I can't stand to be touched on my legs   4w
  • nolessthanblessed I also have done at home desensitization with a soft I mean blankey soft wash cloth rubbed as gentle as I needed over my foot and leg at first I'd last 25 seconds now its not nearly as sensitive I can wear a sock on my foot on good days and shave on really good days! It's an essential the longer you wait the harder it is!   4w

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  • rsdcrps4acure So tonight was my school formal and that was my date Jared. I was able to wear the dress with little comfort (thanks to therapy!) and was able to wear 6 inch heels which was so exciting!! If you guys want me to see your accomplishments just tag me in your pics and I will try to post some!! #RSD #CRPS #rsdcrps #rsdcrps4acure #heels #are #an #accomplishment   4w
  • nolessthanblessed Truly beautiful   4w
  • rsdcrps4acure Thank you! And we all have our struggles but they can either wear us down and discourage us or can challenge and change us so I think we should all choose to take the challenge @nolessthanblessed   4w
  • bombshellmcfe Congrats on wearing heels & You looked beautiful!   4w
  • roxannedawn Your dress looks beautiful! I hope you had fun!   4w
  • cami_moy3517 Awww my Cassie's growing up your dress is gorgeous. I'm so happy for you!   4w
  • lauraelizabethr11 You looked gorgeous! So happy you got to wear heels! What a great accomplishment.   4w
  • shaunalk915 Beautiful!!!   4w
  • rsdwarrior Gorgeous   4w

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  • rsdcrps4acure 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   1mon
  • gumball2099 I had the same thought after the word on the injuries of those people and children were released. And my mind went straight to "I hope and pray that they heal and recover quickly and none develop RSD on top of the physical injuries sustained in this tragedy. I felt selfish and awful for expressing like I always do about my pain when all of these people have lost limbs and have horrible injuries and were just happy to be alive.<'''   1mon
  • gumball2099 And I will continue to pray for Boston.   1mon
  • chefbrod @ssantos3   1mon

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  • rsdcrps4acure So this is why I haven't been on. Since march 24 I have been sick but I was feeling a little better last Saturday until Monday and I went back down hill rapidly. And on top of it all I had to have blood drawn. I don't know if all of you have trouble with needles but besides my fear of needles (I got fearful because the last time before yesterday I had blood drawn the nurse hit a nerve so I got RSD in my right arm) the RSD doesn't take to well to needles. Luckily I had an amazing nurse but that didn't stop the sharp pain I received. I have had off and on high fevers, cough (which prevents me from breathing for a few seconds at times), I can't swallow w/o excruciating pain, can't talk, and of course I'm having a full body flare. Sorry for ranting guys I'm just so sick and the RSD isn't helping me out and my recital is in 23 days thank u to all of u who have sent me encouraging messages these past few weeks. Will post again when I start to feel better because I have literally no energy. Hopefully will be better in a couple days!! #rsd #crps #rsdcrps #rsdcrps4acure #rsdsucks #it #stunks #to #be #sick #with #RSD   1mon
  • gumball2099 You can rant all you want that's why we are all here, for eachother. Im so sad to hear its been so had for you. It's been the same on my end. I don't know how I make it through the day not being in a wheelchair. It's awful. Hang in there you are stronger than you even know. Keep moving, an ill keep praying for you and all my other warriors. Love and relief to you .   1mon
  • michennnaa_gates Hang in there<3 you're rnd family will always be here for you!   1mon
  • caitlink22 Get well soon!!!!   1mon

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  • rsdcrps4acure Happy Easter! I hope you had a blessed day!   2mon

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  • rsdcrps4acure Psalm 69:29 my encouragement. I have been sick all week. Didn't even go to the studio or workout or even stretch- I know this is serious (lol anyone who knows me knows I don't leave or call in sick to the studio unless I am truly sick) and if I'm not better by tomorrow mom is taking me back to my doctor for another strep test 😕 but she is refusing a mono test because then I would have to have a blood test and with the RSD we try to avoid needles when we can... Unless I get even more sick, I don't think that will happen.... Hopefully though I will be better. Please keep me in your prayers! Thanks. Hope all of you are having a better week than I have had though. #RSD #CRPS #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #motivation #inspiration #bible #verse #psalms #i #hate #being #sick   2mon
  • darkdaisies prayers to you!   2mon
  • _sasha_ Your in my prayers every night girly. Be strong   2mon

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  • rsdcrps4acure So today I taught for 4 hours straight but I came early to do some therapy work and look at what I have on my feet... POINTE SHOES!! So even though I can only do really simple things (my supporting leg is not the leg that I injured) but just being in these shoes again makes me so happy even if its only for releves (aka calf raises) and balances. And of course you see all of my therapy bands, leg warmers, shoe bag, and tiger tail scattered around. Slowly but surely I am coming back! How are all of you doing in therapy? Tag me at #fightthefire so I can see your improvements! #rsd #crps #rsdcrps #rsdcrps4acure #rsdsucks #inspiration #motivation #pointe #shoes #happy #dance #ballet   2mon
  • shaunalk915 This is amazing and inspiring. I hope one day to get there again. I also see a pain psychologist and he is amazing and a HUGE help. I recommend it as well @rsdcrps4acure @jraebaybay   2mon
  • lizoph796 @rsdcrps4acure @jraebaybay I was on gabapentin but had to get off because of side effects...I switched over to lyrica which I've been on for 3 yrs without many problems!! It's a good alternative to gabapentin if you end up having problems.:) also pain psychologists help a ton as the others have said!   2mon
  • jraebaybay @lizoph796 that's what I'm afraid of! What side affects side you have if you don't mind me asking?   2mon
  • lizoph796 @jraebaybay I had mood changes, fainting spells, nausea, and brain fogginess (it was hard to concentrate and I couldn't really think clearly). I couldnt function like that, so i just had to get off of it. But that's just me, you may not have many problems!!! If you do try taking it, be sure to give your body at least 2-3 weeks to adjust...often times our bodies react to meds at first, but if after the first couple weeks you're still having side effects i would definitely talk to your dr about it and get off of it! Did your doc give you any other medication options?   2mon
  • jraebaybay Oh man that's what I'm scared of! I'm in school and I need to concentrate! I'm already moody as it is! I guess we will have to see what happens @lizoph796   2mon
  • lizoph796 I hear ya, I was in your same situation! It's hard enough to be happy and concentrate with all the pain, and medications don't help any.:/ just see what happens, don't feel like you have to try it, just do what you think you can handle! You WILL get through this! Meds are supposed to make the journey easier, and if they don't then it isn't worth it. @jraebaybay   2mon
  • rsdcrps4acure I agree @lizoph796 medications are supposed to make this easier that's why I am not on ANY medication any more because none of it was strong enough and had to many side effects now I just workout when I'm having trouble and concentrate on other things instead of the pain regardless of how hard that is at times. It is ruff but we can either let it challenge us or control us @jraebaybay   2mon
  • goddessinspired1 So happy for you. Must feel good on inside. My rt hand and arm are effected, that is hard enough cant imagine a dancer with such pain in legs! #rdswarriors #keeppositive#dancethepainaway!!!!   2w

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  • rsdcrps4acure Therapy is hard. It is awful. It is painful. It is worth it though. Every time it hurts we have to crave more of that hurt, which I know sounds crazy but I have been able to use that pain to fuel my fire. Even though I am not on pointe at the moment (not because of RSD but because of an injury) when I was in training and my feet would feel like they were on fire and were gonna break off- I used that to make myself work harder. I let myself get angry at the pain. I would practically scream at the pain to go away and every time it hurt I would push a little harder to try to show the RSD that I was in charge. I just had to do it. I is therapy to challenge me and to strengthen me. How do you use therapy? What kinds of therapies are you trying out? #rsd #crps #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #inspiration #motivation #comment #on #question   2mon
  • lizoph796 I just got Botox last week to help with therapy and the RSD Dystonia I have...I'm waiting to see if I'll get any results!! Otherwise I'm doing mirror therapy, and just movement therapy....it's hard, but I'm sure it'll get easier sometime!!! @rsdcrps4acure   2mon
  • rsdcrps4acure It won't get easier... But you will get stronger ;) @lizoph796   2mon
  • lizoph796 True:) it'll be worth it all in the end! @rsdcrps4acure   2mon

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  • rsdcrps4acure Sometimes it's hard to think about the long run. Today after church my grandpa and I were chit chatting and be asked me about my solous and when I can dance again, I told him about how I have been pulled out of a few dance numbers and won't be on pointe and such. I am disappointed that this injury is taking so long to heal but he also knew that I am trying to get into a crazy 4 week summer dance intensive, and if I'm not healed I can't go. As we were talking he says well think of it this way, "less recital numbers, better healing. More recital numbers, less dance time in the summer. Are you in it for the long run or not?" This really made me think. All these Theraband exercises and time out of dance is helping. Regardless of whether I can or I can't go to the intensive this summer I want to be able to dance on pointe again, so I have to behave. Are you in it for the long run? All those last few steps or last few seconds while desensitizing are really important, don't give up if anything try for a few more. I hope hour in it for the long run. #rsd #crps #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #inspiration #motivation #in #it #for #the #long #run   2mon

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  • rsdcrps4acure There are always going to be days where we want to give up. The past few days I have been battling that feeling. My solous is healing very slowly (sadly) so I haven't been fully dancing or on pointe and I found out that I might not be in my dance recital-- which tore me apart. But I can't give up. Luckily my accountability partner was like, "look regardless of what you feel you have to keep fighting. So get up and fight." And my coach (who injured her solous last year and knows that long tedious healing process) has encouraged me to use this time to really focus on touch therapy and my relationship with Christ. But if I give up all hope is lost. So don't give up and tonight I was doing my daily bible reading and I read this verse and I hope it will be as encouraging to you as it is to me.
    Psalm 42:5,6,8
    "Why am I discouraged? Why is my heart so sad? I will put my hope in God! I will praise him again-- my Savior and my God! Now I am deeply discouraged, but I will remember you... but each day The Lord pours His unfailing love upon me, and through each night I sing His songs, praying to God who gives me life." Remember you are not alone. It is ok to feel defeated but you have to rise up. Don't let it take over and don't you dare ever ever give up. #rsd #crps #rsdcrps #rsdcrps4acure #quote #quotes #rsdsucks #inspiration #motivation #hope #never #give #up
      3mon
  • dancingthroughrsd You can do this. Sometimes I just want to give it all up and not careand just be done but im a fighter you are a fighter everybody with rsd is a fighter and we can do this!   3mon

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