Today I prepped for OR tomorrow. After 8 years of fighting these chronic illnesses, I have figured some things out along the way! I have really started perfecting my recovery plan and I wanted to share 10 different ways that you can make your recovery easier ☺️...
I know I haven’t posted in a while, life has been crazy. You have all been on my life’s journey with me and I wanted to share one of the biggest moments with you. Thanks for all your encouragement and support through the years 💛
IT’S OFFICIAL!!!! So as many people know Jared proposed on July 25, 2016 when we signed our company papers and co-owned OST, but we put all our money into @dancersost but didn’t have the money for a ring. After many att...empts (all of which I spoiled due to being in the hospital) he officially proposed with a ring 💍 we couldn’t be happier! Let the wedding planning begin! 🥂
Happy Thanksgiving Everyone! We had a great day but like many spoonies I was reflecting on how hard it is to celebrate gratitude when you don’t feel thankful. “This has been on my mind a lot this past week. It can be hard to be thankful when there is so much broken in our world, in our lives, and for us spoonies, in our bodies too. Right now I have so much to be thankful for, yet all I can seem to gravitate towards is the fact we don't know when/if I will walk again without s...erious assisted walking devices, I may need one (or two) major reconstructive surgeries that could change my life and way of living, etc. I just do not feel super grateful.
Do you ever feel like that? Like even though you have an endless amount of things to be grateful for you can only focus on the things going wrong (or that might go wrong.)...” To read the rest of my post click on the blog below
Hope this post helps you celebrate this holiday season- even the small victories are victories.
#livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie
#rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3
#blogger #blog #happiness
As I get ready to head into the OR tomorrow morning, I am feeling the nerves kick in. Music helps me stay calm and I decided to share my "when the nerves kick in" playlist with all of you! Find it here on in our bio or below: https://livingthechronicillnesslife.com/…/when-the-nerves-…/
How do you stay calm? Also beware if you don't like boy bands you might not like this playlist 🙈 to each his own I guess 😜
So I know that I have been quite silent. I appreciate everyone's messages checking in and appreciate you even more for respecting my decision to wait to talk about things. When tragedy strikes, we tend to be silent and I think that is healthy.
Now I am ready to break the silence. I wrote a lengthy post filling you in and sending you a HUGE thank you (don't worry if you want a small update you can read the first and last paragraph 😉 I get the time crunch situation.)
Also THA...NK YOU for after only blogging for a little over a month... for having me make the top 100 list for chronic illness blogs! 🎉That was so exciting to wake up too 😘 thank you all for your support.
If you are on Instagram the new blog link can be found in the bio! If you are on Facebook here is the link: https://livingthechronicillnesslife.com/…/breaking-the-sil…/
So I wanted to update everyone as to why the #iamnotinvisiblemovement has been paused. I have been admitted into the hospital and so far, my hand is propped up and covered in heat packs to keep my iv fluids from coming in cold and to help calm the other 2 veins that were blown. My right arm is in a shoulder brace because it keeps trying to sublux and inside that brace is a thumb and wrist stabilizer from a tendon, thumb, and radial extensor subluxation that is healing. My HKA...FO is off so we can ice my hip and knee because to add insult to injury- my hip popped out again today while here. I don't have much energy to keep typing but my mom summed it up great so here's an edited version of her post about why I am here: "This has been a tough one to wrestle as a parent as her pain issues that brought her in are due to a doctor's impatience and lack of listening when she needed an IV for a sedated MRI. It has been a process to work through forgiveness as I was there that day and we worked so hard to communicate with the awesome team, only to have one act bring her back to CRPS pain she hasn't had like this in 6 years. She knows what to do to beat it into remission, but it's a challenge with her cartilage being like jello and causing subluxations from the Ehler's Danlos."
A special thanks to my main med team and most of the docs I have seen here along with the AMAZING nurses I have had. Most importantly I want to thank my parents for their support along with my loving, patient (well mostly 😜), caring caregiver/fiancé @jcnolin11 because I couldn't do these sleepless nights and painfully long days without him.
Prayers and visitors welcome 💛
"God when you choose to make mountains unmovable give the the strength to be able to say it is well with my soul."
P.S. when you have serious chronic illnesses as a child/adolescent, you are encouraged to stay within the children's system as an adult (and the conditions I have are only treated here as there are no other hospitals that treat/care with these illnesses in all of NE.)
I'm so excited to kick off #iamnotinvisible I am excited to share stories of spoonies with all sorts of chronic invisible illnesses! Want to be featured? Start by writing three facts about you in the comments: 1. Your name 2. Your invisible illness 3. If you want to be a featured spoonie story! If so DM us a picture to post and the caption, and we will give you further instructions.
1. Cassie M.
2. RSD/CRPS, EDS, & Dysautonomia
3. YES you will see me featured tom...orrow!
#iamnotinvisible #spoonie #livingthechronicillnesslife
"Today I needed my 10 minutes. I needed to freak out and be upset that things aren’t going the way I had planned. I cried and had a panic attack for ten minutes- and I am okay. Why am I okay, because I was able to freak out, mourn things that I have lost and am missing out on, and be vulnerable. Do I feel 100% better- no, but I was able to let all of that frustration go- yes. So where do I go from here and where do you go from here?"
Read about how I handle the stresses of ch...ronic illnesses here (or link in the bio)! https://livingthechronicillnesslife.com/…/you-have-10-minu…/
You know yesterday when I was working on this post I had no idea that it would apply to my life so heavily today... I had a massive 2 hour long flare where my extremities felt like I had fire ants crawling under my skin. 😖
Anyways it was honestly great to reread this and today I am enjoying these three little things- the fact that my car has an AC and I was able to freeze out the flare, Jared got me a new succulent, and I am able to rest this off in bed.
Feel free to check... out my post on how you can enjoy the little things regardless of your chronic illness. Link in my bio or here: http://livingthechronicillnesslife.com/…/enjoy-the-little-…/
COMMENT a little thing you enjoyed today!
#rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3
#careerconsultant #dancersost #dancecoach #dancemedicine #dancemedicinecoach #dancept #balletcoach #privatedancecoach
#lifestyle #lifestyleblog #blogger #vlogger #blog #vlog #happiness
PC: either @mauramaginnis or @michaelwallmann / @mwallmann
"When I talk to people or speak somewhere one of my greatest points that I hope people remember is that what was my greatest disappointment became my strongest form of empowerment.
Braces are apart of our lives as EDS spoonies. There's just no way around them, but they don't have to discourage us. Yes, I am annoyed that I am typing without my right thumb because it is braced, and annoyed as all hell that I can't walk on my own, but that is apart of my life.
Looking back on ...these past 8 years, I have the best conversation starter ever! Everyone always asks about my brace(s) and even though more often than not I internally groan..."
Embracing our illnesses can be challenging and its hard to work up the courage too, check out my blog post today about learning to embrace your chronic illness here (or if you are on insta the link is in our bio!) http://livingthechronicillnesslife.com/…/embracing-our-bra…/
"You know those days. Those days when your judgement seems clouded and you’ve lost control. Those days when nothing goes right and you’re body fights you… and you don’t even know how to fight it or even start to beat it. Well today is one of those days. One of those days where you don’t know whether to scream, cry, or panic so you don’t do anything of those and just sit in silence. Today is one of those days.
Last night my thumb (I still don’t even know if it was a joint, lig...ament, or tendon) subluxed. In the shower..."
The rest of the article talks about these days and how we can do our best as spoonies to get through them! Check it out here or click the link in our bio: https://livingthechronicillnesslife.com/…/today-is-just-on…/
"I think patience gets such a negative stigma because as spoonies, we are sick of being patient and put in situations that require tons of patience. More often than not I would like to think I wear a badge of patience... until I can't do anything for myself. I have always thought that I must be super patient because of everything that I have gone through, but patience is a choice. It is not an experience and...."
Today I wrote a blog about patience and how Jared praying for p...atience basically made me freak out, and his response was something I hope to forever remember. Loving through a chronic illness is hard but you just have to do it and keep on fighting. To read the rest of the article click here or if you are on Instagram click the link in our bio: https://livingthechronicillnesslife.com/…/maybe-we-just-ne…/
I get many messages from you guys in regards to my life, my relationship with Jared, and how I (we) handle this illness so after a month of long hard work we did it- we made a website! This is the website for RSD/CRPS 4 a Cure and has loads more on it. Feel free to check it out and get ready for the #iamnotinvisible movement to start on Sept 22nd! Click the link in the bio for the website or here: www.livingthechronicillnesslife.com
I get many messages about how I stay positive and push through 24/7 despite the things I go through on a daily basis, and I wish I was as together as people believe I am but sometimes I'm not. I am a real person with the same emotions as everybody else- I have just learned how to take serious control of them. Tonight is not one of those nights. The people that fill my life are incredible people but my fiancé is truly amazing. He packed for us, followed the list I wrote, and b...
I am not one to share many intricate or anything that someone might classify as "sympathy seeking" but I truly need your prayers. I got home at 9:30 pm had a long sedated MRI and let's just say I have had quite a few sedated MRI's but nothing like the one today. It was traumatic to say the least. This one will take more recovery than normal. I am not ready to discuss what happened- let alone put it on social media. Prayers would be much appreciated though.
We are not invisible. This September we are launching a campaign to share awareness of not just RSD but raising awareness to something much greater- all invisible illnesses. We are also going to be doing a series weekly about living with an invisible illness- I am so excited to share this project that I have been working on for quite some time! Get ready because it's come your way ✨ #iamnotinvisible #rsdcrps4acure #invisibleillnesses
#RSD #CRPS #rsdcrps #rsdcrps4acure #rsdawareness #rsdwarrior #rsdangel #spoonie #chronicpain #chronicillness #chronicillnessawareness #invisibleillness #multipleillnesses #eds #ehlersdanlossyndrome #edstype3 #ehlersdanlos #livingthechronicillnesslife