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Julianna Shapiro

Daily Living with Pain  - 
 
Did you know that the Chronically Awesome Foundation has a weekly online support group? We do and you are invited. All we ask is that you show up on time (noon pacific/3pm eastern every Wednesday) and that what happens in this private group stays in the group. 
Today we are talking about how we keep ourselves entertained when we are stuck "Chronically At Home".  We hope you can join us, if not today we are here every week.
Julianna Shapiro originally shared:
 
Topic TBA

Everyone who wishes to share will be given time to do so in an uninterrupted manner. That amount of time will be determined by how many attendees we have.
Please remember to set up for group in a private place or wear headphones. Also remember that what happens in group, stays in group.
This group is moderated by Julianna Shapiro. Julianna is not a therapist and serves only to move the group along, to stay on topic, and to keep order.
Chronically Awesome Support Group
Today, April 23, 3:00 PM EDT
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This study will be looking for participants with Chemotherapy-Induced Peripheral Neuropathy. Calmare is the treatment that got me pain free. Anyone who qualifies for this study should give it a try. Calmare is pretty amazing!
Scrambler Therapy in the Treatment of Chronic Chemotherapy-Induced Peripheral Neuropathy http://clinicaltrials.gov/ct2/show/NCT02111174?term=scrambler+therapy&rank=4 This study is not yet open for participant recruitment...
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Barby Ingle
moderator

Pain Management  - 
 
What can a patient do to stay on track with my medications? - created by:@BarbyIngle- As a patient with a chronic care disease I have found some common reason I don’t to take my medications and things that have helped me stay on track. http://barbyingle.com/what-can-a-patient-do-to-stay-on-track-with-my-medications/
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I just got a medication app/calender. List all the things I take and can set a reminder to take them.
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The first week after Calmare has come and gone. It has seemed so fast! My neuropathic pain is under control, but now the mechanical pain from a collapsed arch on my left foot and two years of rarely using my legs are screamin...
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The final edition in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain series, Spring Devotions is near completion. Because we appreciate our loyal readers and followers, we would like your vote for the cover design.
The Cover for Spring Devotions: Your Vote Matters to Us.
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The overview of the PAINS meeting in Washington DC and the report submitted by Myra Christopher, "Efforts to Improve the Lives of Those Living With Chronic Pain" is now available from my website. See what dedicated people are doing to change the way pain is perceived, judged, and treated in America.
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forgive me, I need to vent/rant ... please ...
the season is changing, which as many know, brings an RSD flare like clock work. add to that a lot more though.
since november, no oct. I've been losing weight. it's physically hard to eat. i am getting just barely enough to keep nourished. worse thing about it, we [me, my loved one, drs] have NO IDEA why. [and obviously, if you don't know WHAT you are "fighting" it's kind of hard to win the fight]
I also help run a youth program. it's a beacon of sorts. we help a lot of people. BUT we can only do so much right?
In the course of helping, I am 'expected' to take on a lot, like a LOT. I'm almost expected to work miracles [or so it seems].
I've been bending over so far backwards [well you finish the saying] and I can only bend so far before I break.
I'm up against something right now. I'm standing on my principles and standing up for MY RIGHT to privacy in a matter, and some are acting like I'm just not trying to help somebody in need.
People keep changing 'deadlines', they lie to me, change their 'stories' condescend, won't listen ... act like I should be able to do as THEY want ... they ignore my RSD, they ignore I am but one man, I can't drive, I hardly can sleep well ...

I'm so ready to give up trying [NOT suicidal here, not in the least, I mean giving up on trying to do things like help etc] my 3 best friends, and my brother [and his gf] and I think my Pastor all seem to understand and back me up ... one local police officer seems to [this week at least lol] but many others, my mom [since Im disabled, I live with my family; mom, step dad, a sister, a brother and his gf] some others in the youth program, some state workers [well one, ONE seems to understand, but nobody is listening to him. whether I quote him or if its him directly]

urgh ... thanks for listening!
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Kurt Ramsey-Hess's profile photoJason M's profile photo
4 comments
 
Hang in there, Jason. You have my support even though I'm halfway across the country.
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Barby Ingle
moderator

Pain Management  - 
 
Learn about the PA Shuffle!@powerofpain's Prior Authorization Awareness Video – PSA Project 2014! Go to: http://patientawareness.org/policy-efforts/ for info on legislation having to do with access to care issues
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Megan King

Daily Living with Pain  - 
 
A lot of observations and bumps in the road this week. It's been hard trying to figure out the "why" question and listen to my gut. Hopefully some strides forward will be made this week. http://myimpossiblemedicaljourney.blogspot.com/2014/02/the-gut-feeling-is-back-2014.html
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Megan King's profile photoBlair Miller's profile photo
6 comments
 
I also hope you get help. I also feel your pain 
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Barby Ingle
moderator

Pain Management  - 
 
Order tickets via Eventbrite:
http://midwestneuropathicpainexpo.eventbrite.com/?aff=efbevent

Midwest Neuropathic Pain Treatment Education Expo 2014, which will be held on Saturday, August 9, 2014 from 10 AM to 3 PM at the Holiday Inn & Suites in Rosemont, Illinois. This event will offer multiple education and exhibition opportunities to the patients, caregivers, public, and healthcare professionals in the search for answers to the complex questions surrounding chronic pain illnesses and disabilities. This event will be marketed throughout the entire country, but focused on the Midwest, and we anticipate approximately 200 attendees. Those not able to attend in person can watch and participate via a live stream of the event. A confirmation will be sent to registered attendees, and online viewers will receive a link to view the conference in their email. 



Topics covered are access to medication, insurance issues (step therapy practices, pre-authorizations, and specialty tiers), issues surrounding pain management, the pain language: communicate with caretakers and healthcare professionals for better patient care, pain in perspective to life tips and tricks for coping, patient's rights and resources, and treatment specific modality information on alternative treatments such as Calmare. Speakers and exhibitors will include patients, healthcare professionals, and alternative care.

For questions, comments or more information contact: gracie@powerofpain.org
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Megan King

Daily Living with Pain  - 
 
Having answers to why you hurt it so validating. You know for sure, you aren't going crazy. http://myimpossiblemedicaljourney.blogspot.com/2014/03/results-from-pennsylvania.html
Well, we made it home safe and sound from Pennsylvania. The weather behaved and we didn’t run into any troubles which is a very good thing. Normally we have a couple hours to site see but not this time. It was strictly medica...
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Kurt Ramsey-Hess's profile photo
 
Yay, +Megan King! You got some answers and that means a lot. I'm very happy for you.
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I know many of my friends here are survivors of CRPS, but there are many comorbid conditions, one being fibromyalgia. My comments have been submitted to both the FDA and the National Fibromyalgia and Chronic Pain Association, which will be making a presentation based on the compilation of information they have received because of patient involvement. The NFMCPA offers contact information and in greater detail at the NFMCPA website. Don't let them think we don't care about what they do or don't do for us. The NFMCPA has made it easy to use your voice.
http://www.fmcpaware.org/rescheduled-fda-fibromyalgia-patient-meeting-march-26-2014.html
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Barby Ingle's profile photo
 
Hope the meeting went well! 
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Amanda Siebe

Neuropathy  - 
 
How Calmare has Saved my Life
Staring this month, I feel like I have the opportunity to start the whole of my life over again. Since starting Calmare ten days ago, I am a believer. I am now down to a 1-2 on the pain scale with another week to go. I start ...
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Barby Ingle
moderator

Daily Living with Pain  - 
 
Does your Doctor do the P.A. Shuffle? - #powerofpain PSA Project 2014! Goto: http://patientawareness.org/policy-efforts/ for info on legislation having to do with access to care issues
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Joy Hicks, CPM's profile photoJason M's profile photo
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