hopeless-harlot said: Hello, I was sent on to you by Laura Jones from Doha, I recently got diagnosed with CRPS. I've been struggling with it for 6 years with no diagnosis. So Laura thought It might be good for me to approach another sufferer. How are you coping?
Hi hi! Nice to meet you, although I’m sorry about the circumstances. What’s your name? I’m so sorry to hear about your pain. A diagnosis absolutely does help though! Don’t you agree? It’s the first step. Your pain has been justified! You’re on your way..!
Again however, CRPS is no easy feat. The right doctor for you can be so hard to find. Same thing when it comes to finding the right treatment. That said, we’re all here for you!
I had a really tough time in my first year with doctors telling me straight up that there was no hope with this illness. I’m super lucky that my family wouldn’t let me listen. If you’re facing this same thing with doctors being awful to you at the moment, I’m here to tell you THERE IS HOPE!!!
After a LOT of physical therapy and a round of Hyperbaric Oxygen Therapy (HBOT - Very interesting and worked to decrease my sensitivity for a period of time! I write about it earlier on this blog…) I found my way to the wonderful Dr. Timothy Lubenow at Rush Hospital in Chicago*. You can read all about my treatment with him if you go back in time on TheProject3x5 (I have a Spinal Cord Stimulator and what not…) I’ve also done inpatient and outpatient ketamine treatments along with IVIG treatments with Dr. Enrique Aradillas-Lopez at Hahnemann/ Drexel Hospital in Philly.
*Some things have worked, others have not. And of course, I have to put the disclaimer that not all doctors are right for everyone. I only write about my experiences. The same goes for treatments. I write with a lot of positivity, hope, and openness about the treatments that have worked for me… but this disease is super tricky. Different strokes for different folks and what not. That said - stay positive!)
Just a quick warning… In this day and age - with nagging agony day after day after day - it can be pretty easy to find yourself lost in the deep dark depressive depths of message boards or twitter chats filled with misinformation and (almost understandable) hate based on some patients’ personal gnawing feelings of pain.
You must remember to rise above!!! To take everything you read with a grain of salt! (Again, including what I write…) So much of what’s out there is peppered by neuropathy - but thankfully positivity always abounds :)
Always remember that there IS hope within this community! Stick to those who are fighters, and become a pain warrior yourself!!!
You can keep up and continue to learn more about what goes on by checking my Twitter feed, Pinterest, Instagram, and of course this blog!
Thanks for getting in touch!
Have a happy and healthy day.
- Danielle xx
#texans in #pain and #caregivers, too! Join me in Houston tomorrow as I host a small event for #PainAwarenessMonth on behalf of @powerofpainfoundation! Interested? Sign up in the comments :) spots are filling up fast, but we’d love to see you! And if you can’t get to Houston we’ll see what we can do about getting you hooked in online. Big love! Can’t wait to see y’all! xx #CRPS #RSD #MS #RA #EDS #endo #cancer #neuropathy #nervepain #chronicpain #chronicillness #diabetes #lyme #fibro #texas #houston #caregiver #houston #positivity #mindfulness #disabled #painwarrior #realpaindays #nervedisease @us_pain_foundation #invisibleillness #insurance #arthritis #JRA #HBOT #complexregionalpainsyndrome
If I had a penny for every, “But you don’t look sick…” #invisibleillness #chronicpain #chronicillness #sick #liveonyourownterms #positivity #areyouadoctor? #autoimmune #cancer #CRPS #RSD #beingpositivedoesnttakeawaythepain #POTS #MS #ME #illness #EDS #raredisease #health #fibro #arthritis #diabetes #chrons #disabled (at Houston Methodist)
Mindfulness Matters! Combined with technology it’s golden! My current crush? The app Mindfulness Daily. It conveniently sends reminders (see above photo) directly to my iPad through the day, allowing for mindfulness (which in turn brings focus, stress relief, peace, etc.)
Perfect for any spoonie! Or, for that matter, anyone and everyone looking for more balance in their life.
Go sign up!!!
The most common question for those of us dealing with severe pain / severe illness in a positive manner is, “But how do you do you do it?”
My answer is always the same and very simple:
“What’s my alternative? To curl up in a ball and have that be it?”
Am I to forget my hopes and dreams? My passions or goals?
Nope! No thanks! No way. Rather not, thank you very much!
As I see it, the bad times are there so that we may truly appreciate those times that are good. And so now, whenever I can, when good days creep in and I feel up for something wonderful… Not only do I fully take advantage, but I’m more thankful than you could ever begin to know.
Raise your glass and toast with me! [Wait, what are we drinking?!]
GRAPE JUICE OF COURSE!
Big love! - Danni xx
In the spirit of once again submitting myself to an inpatient Ketamine Infusion at Hahnemann University Hospital starting on Monday…
Here’s a #throwbackthursday to the Vice Online Magazine piece - featuring me - called “Is Ketamine the New Miracle Drug”
The article focuses on discovering ketamine as a means to treat everything from Chronic Pain disorders such as Complex Regional Pain Syndrome (CRPS/RSD) to Fibromyalgia; to Chronic illnesses including OCD.
GO READ IT! And spread the word!
Find it below in many different languages:
Big love! Hope your day was wonderful! - Danni xx
How’s it going? Are you having a good week?
Have you ever dreamt big? Really big? In fact, what feels like maybe almost sometimes a little bit scary big - but scary in a good way!!! In a way to where you get soft, fluttery butterflies in your tummy - not the steel tipped ones. Well, that’s where I am right now, and I couldn’t be more excited about it! To me, there’s no better feeling than being pushed out of your comfort zone - especially for a good cause! And especially when you feel so proud of the end result!
See, I’m up for a scholarship to the wonderful Marie Forleo’s B-School! The application was a video via YouTube (see that video above? that’s it right there!) and the win would be a way for me to really learn how to skyrocket TheProject3x5 and CRPS/RSD advocacy to the next level.
To be a little more specific, based on my own experience with Chronic Pain and Chronic Illness - through my disease CRPS - I want to bridge the gap & make it easier for other patients from the terrifying starting point of initial diagnosis right through to figuring out treatments and finding support groups. Stress only amplifies illness! So, let’s get rid of that pesky little problem! I’d be sure to instead work TheProject3x5 around mindfulness and meditation. Again, using my own experiences to make sure it’s a realistic endeavor.
I get excited just thinking about it all!
But, like I said… first up, I need to win the scholarship! And here’s where you come in…
VIEW MY SHORT VIDEO & SPREAD THE WORD!
- The video above explains everything! Watch it on as many devices as you have, because the greater the views I get, the greater a shot I have.
- Then click here, to like the video on YouTube - again the more likes I get, the greater a shot I have!
- It’d mean the world to me if you were to stay on the YouTube page & make a positive comment about the video - this step is super important* because again - you got it! The more positive comments, the greater the chances are that I’ll be awarded the scholarship.
People get thousands of views! So let’s show them what Trinis, TheProject3x5, and The Power of Pain Communities can do here! :)
And did I mention that sharing is caring?
LET EVERYONE YOU KNOW SEE THE VIDEO!!!
Either via Facebook, Tumblr, or Twitter, perhaps even Pinterest! Any other social media platform should be just fine, I’m sure!
Just please make sure that however you decide to share, you also put:
1) the hashtag - #winBSCHOOL on it
2) my name (Danielle Alexis Cosgrove)
4) the original video YouTube link - http://youtu.be/HdMCg7y9Hk0
3) and then this link as well, to promote B-School for Marie :) - http://joinbschool.com/
Thanks a million!!! You’re the best and I hope you have a fantastic week! xx