rsdcrps4acure rsdcrps4acure

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RSD/CRPS 4 a Cure  This is the profile for RSD/CRPS 4 a Cure. for more info on RSD/CRPS email: [email protected] Please support our fight 🔥✌🏻️

This quote was in my head as I got admitted last night. I think that there are many times where most pain flares I know that there is nothing the hospital can do to help, and other times I have this little shred of hope in me that tells me try one more and go in. Let's hope that today when I see my lead doctor on my regular team (not the general floor md team) that we get some good answers. Please keep me in your thoughts 😘 I hope you all have low pain days and that you have a good Sunday! #rsdcrps4acure #rsdwontwin #amnesiawontwin #edswontwineither

#Repost @officialcassiemayo with @repostapp
Still in this pain flare but this dog keeps me strong 💛 thanks to my family for taking care of me this week while Jared has school, and thanks @jcnolin11 for all that you do everyday and when you come home every night to take care of me 💛 #amnesiawontwin #rsdwontwin #edswontwineither

Want to learn more about me and my fiancé's love story? Read this! We have dealt with RSD, Amnesia, and EDS we are a real life version of the vow! Click the link in the bio to read!

You know what I mean when I say those days right? The days when you feel like you are having the same old "conversation" or "disagreement" or "whatever word you want to put here" again and again. Those days where you just feel like your world is not getting any easier and those who you wish could understand the things that you feel that you can't even describe could understand. Not even painful feeling but the emotions that come with having a chronic illness. I think as "spoonies" we need to also recognize that it is not their place to understand the things that we can't explain. I'm not saying that our loved ones shouldn't stop and put themselves in our shoes but...Just like our disease is frustrating for us, it is just as frustrating for those who love us. This life is hard. Tonight I am hanging out with a dislocated shoulder and more than a bit of frustration if I'm being truly honest. This illness can overpower our bodies but we must not let it overpower our minds. Just remember we are allowed to have times of frustrations, and so are our loved ones. #rsdcrps4acure

Peek-a-Boot! Yes, I have been out for almost a week now with an Achilles injury. I have been keeping it quiet, but I know that I eventually need to tell everyone because this is affecting my business. Who else feels like these spells have to come at the most inconvenient times ?! 🙄 anyways I'm sorry I have been so distant my business has started taking off, and that is where my main focus has been. How are all my warriors doing?!? #rsdcrps4acure

Tonight one thought crosses my mind. What happens when there aren't any more doors to create? My mother consistently as a kid and even now as an adult, would remind me how I seem to always want to choose option 3 when I am only given option 1 and 2. With this illness I especially want a third option. I want a cure. That is option 3. This month as you know is #rsdcrpsawarenessmonth and we need a cure. I encourage everyone to share their stories. I know for me, I am running out of options. #letsfindacuretogether #rsdcrps4acure

Do you ever just want to scream and cry and throw it fit because your pain just won't stop? Or maybe crying buckets full of tears to try to wash it all away? Or maybe you just sit, still and quiet trying to process all the events that have brought you to this moment?
Right now, I am having one of those moments. One of those moments where you pray that God would take away your pain but also know that above all else you want His will to be done- regardless of what that means. This month has been hell and I wish it would just end. Trying to fight is hard and trying to stay in God's will is even harder because we know His rewards are greater.
But I want you to know, I am not saying that we shouldn't experience moments of grief, sadness, anger, and frustration because if we ignore those feelings. They will end up making us burn up inside more than we already do. So for right now I am going to let myself be sad and upset. Tomorrow will be a new day and another chance to try again, but either way I pray that His will be done. #rsdcrps4acure

I have been pondering what to write about tonight as I sit in a hospital bed unsure of what is to come. Do I write about how I know that eventually it will get better? Do I write about how sick I am of people saying I need to take this one day at a time and knowing that there is nothing I can do but take it day by day? Do I write about how much I want these meds to work? Do I write about my amazing family and my love who have dropped everything to help me?... or do I write about how sad I am, and how I really feel. I mean I know that I am brave, I know that I will survive this, and I know this quote is true. For some reason at this moment that is not enough for me. It's not enough for me to know that I'm brave and that I'm going to survive. It's not enough for me to know that the people I love have turned their lives upside down and put them on hold for me. It's not enough for me to know that it almost 1:30 am and I'm still passing out and still in pain.
Do you ever feel like positivity isn't enough?
Life is crazy and I don't know what my future holds but knowing that at this very moment I have people that love me and that despite that setbacks my doctors are tirelessly working to help me... maybe, just maybe for tonight that will be enough.
What is your enough? #rsdcrps4acure
Low Pain Hugs,

This week has been a hard week. I have been off and on pain meds and in severe back pain and idk how to feel right now. I know that I cannot control how often I pass out and I cannot control the pain flares, but I feel like I am disappointing every one. I know in a couple hours my little pity party will be over, but out of everything what I want you all to know is that every once in a while it is okay to have a pity party. You are allowed to be upset that your body doesn't do what you want, but it cannot be an everyday thing. My rant is over and I know in a little while my pity party will be over. But thank you all for listening to my rant. #rsdsucks #edssucksmore

Today has been a good day. I am finishing up my vacation and am ready to go back to work (but seriously- I also don't want vacation to end!) Anyhow, I am having a day. You know what I mean. A day. A painful, blistering, pain filled, cramping, fire driven, hot flash central, and pass out kinda day. Honestly RSD sucks and some days we are just going to have a day. I love this quote not just because it's true BUT because it helps keep me in check. So what if my finger was doubly dislocated- I've see worse. We have all seen worse. I'm not gonna get into the whole "be lucky it could be worse" mantra that we have all been told before. This journey of about YOU. And no one else. Even on my worst days (or what physically feel like them) I think of 3 positive things. Here are mine for today:
1. I woke up to my love next to me as the sun came up

2. I got to spend a literally lazy day in bed doing nothing (and it was intentional!!) 3. I got to make a new midnight memory tonight.
What are your three positives?

This really brings out the sparkle my ring and band have ✨ seriously tho a double joint finger dislocation is not fun at all. Good thing I have @jcnolin11 to keep me company and also thanks love for helping me reset my finger 😘 #rsdcrps4acure

I am just gonna be honest with everyone... I am having one of those days. Work was crazy, most of my employees weren't there or were late, and everything that could have gone wrong went wrong. After a long day of work I packed up and went to my car to find that my boyfriend accidentally drove off with them to work... He works an hour away. So now I am on my way to NH to go get my keys. To drive back to FSU to then drive back to my house an hour away. I will probably get home back to FSU by 11-12 and then still have to drive to my house. Then I have to be up at 6. Yeah. It's just been one of those days. Hopefully the photo shoot for @dancersost company goes well 💛 please pray my pain stays down. Love you all and so sorry for the rant. But just know that the sun will come out tomorrow ☀️ #rsdcrps4acure