Life after Diagnosis

Not a single veteran of the RSD/CRPS community can say their diagnosis did not change their lives in some way. Many faces uncertainty, job loss, hobbies no longer joyful or even possible dependant on the activity.

But finding life after diagnosis, be it with CRPS, cancer, diabetes, or really anything else, can be there greatest gift we give ourselves. Can change our treatment approach and even our treatment SUCCESS.

While there will still be the bad days, the better days will grow to out number them because we have something to look forward to. Our founder loved the theater. Loved acting. Loved making people smile and laugh.

And for years she thought it was behind her after she was injured. It's been over 10 years since her injury. Is this the life she expected? No. But the life she has now is different, but still good.

Not only did she take on the challenge to create a new way to enjoy her love the theater, but to bring those smiles and laughs to others. She became a podcaster on YouTube for a game called Minecraft as RSDAngelOnFire.

She has grown a small following both here and in her new approach to get hobbies with CRPS. And like us all, she still has her up and down days which means while she's very busy making those amazing and fun videos, she is still one of us. And today is her 8 year anniversary of being RSD/CRPS Doesn't Own Me's founder.

So let's give a HUGE round of applause for Christa and her fight to live by her own advise, that there truly is life after diagnosis!

Way to go Christa!

Pain Community Stuck In Another War

It’s recently come to light that pain patients aren’t just fighting a war against the US administration for our medicine, but now  Facebook Pain Groups are being targeted by Hackers. So we’re taking a moment to help educate the community.

Research your websites

As you notice below  in the light grey text above is a website domain name is provided: “personalhealthrecords.in”. This is going to be our example to find the answers for you to help avoid infecting your fellow members of the community.

RCDOM members could be War Casualties
RCDOM members could be War Casualties

Go to a browser and use a search engine to search for “whois personalhealthrecords.in” which will give you this selection on google. Please note whois is all one word not two separate words.

googlelinks
When looking at the first link there are a few key things you want to look for. First off the website’s “header” says a fairly recent date.

websiteInfo

Next critical piece of information is registrant information found under “Registrant country” which here it says PK. PK is short for Pakistan, NOT India (which is what the .IN in the address stands for). Finally add in the fact it was purchased late last year. The combination of the three create a trinity of warning signs to avoid. whois

Don’t share if there is red flags

Red flags are

  • hidden registrant information
  • registrants from foreign countries that don’t have English as a base language
  • sites less than a year old
  • registrants in countries other than the domain ending suggests. (.in is India .pk for Pakistan)

Please be very careful of the sites you share. As we mentioned even we were hit, so please know that this is the only way to verify if a site is safe. There is no set time frame, but I think articles like the one that got us, which were initially published the first time over a year ago suddenly reappearing on a page, is a safe bet it is not a valid website.

These sites are including viri and key logging applications. They affect both computers and phones. If you opened links, like the one we posted above, anti-virus applications MAY NOT FIND them yet as they appear to be very new. So please be VERY careful what you share and even more importantly what you open.

How to tell you’re infected

The only way I could tell I was infected was that my keyboard on my phone was responding slower than before and occasionally would open and close randomly for no reason I could explain. Sometimes until there is an issue or the virus is found by an antivirus applications like this can hide and run in the background for some time. Leaving your personal accounts vulnerable. So please if you have ANY CONCERN about what websites you’ve opened, consider carefully what you are using for antivirus software and if behaviors of your machine are not appropriate for standard use, then you may have an issue.

CRPS UK Conference

CRPS UK Conference

CRPS UK Conference

CRPS UK is a patient led non-profit organization which is applying for registered charity status. As part of our aim to support people with CRPS we are hosting our 3rd conference on November 14th, 2015 9:30 am to 4:30 pm where people can meet others with CRPS, learn about current CRPS research and treatments and hear personal stories of living with CRPS.

CRPS UK Conference
CRPS UK Conference

Our distinguished speakers include:

  • Dr Andreas Goebel whose research into CRPS and immunology offers hope for new treatments.
  • Professor Candy McCabe who has focused her research on the relationship between sensory and movement systems and pain in CRPS.
  • Richmond Stace, a pain specialist physiotherapist with expertise in treating CRPS
  • Danielle Brown MBE, a Paralympic and Commonwealth gold medallist with CRPS
  • Julie Weymouth, an expert patient volunteer who works at the RNHRD with people in the hospital for CRPS treatment.
  • And many more.

The event is to be held at the Hilton Hotel Bath and costs £35 per person including lunch and refreshments. The fee covers the room hire, lunch and refreshments; all other costs are being met by CRPS UK.

For more information or to request a booking form please email admin@crps-uk.org
If you’d like to add this conference to your calendar, click here:

Remember:

We’re all in this together. We have one life, let’s make the best of it and work for a universal “CURE” as A.M. Styles called it.

You are the Cure – 1 in a Trillion
You are the “C.U.R.E.” It is within you to be the C.U.R.E. (Create Uplift be(silent) Resilient Everyday). Once you know and accept that you have the “C.U.R.E” inside then you are now rebuilding yourself to be the “T.R.I.L.L.I.O.N” dollar person like the Six Million Dollar man. You can rebuild your life by “Trying it, Remembering it, Investing it, Living it, Loving, It, Owning it, Needing it.” Which is all part of life. We all are valuable we just have to know “IT” and believe IT. So when asked about a “C.U.R.E.” tell everyone that you are the C.U.R.E. and that you are 1 in a T.R.I.L.L.I.O.N.

Posted by A. M. Styles on Monday, October 12, 2015

Community Support Newsletter

RSD Angel Express Newsletter

For those who have not heard, our great friend and huge supporter A.M. Styles a started a newsletter to bring hope, laughs, and new ideas has come to the presses.

RSD Angel Express Newsletter
RSD Angel Express Newsletter

For the last 9 months, he’s been publishing his newsletter to help get some great inspiration, news, information out to the community. With his permission we have published his “RSD Angel Express” current and past 3 editions on our new page.

Some of our administrators have submitted articles for this newsletter and he has opened up the offer to others in the community to send items for future publications. Be it inspirational stories, laugh clips, events to include in the upcoming calendar, and persons you feel should be considered to be recognized as pillar of the community. At this time, these are quarterly publications so they are limited on what they can include, but we highly support his desire to bring about this great contribution and encourage you to submit your works for consideration.

If you want to submit items or be added to the delivery list when they are published, please email him or our webmaster Andre Duncan. If you do not have Facebook, please submit a message through our Contact Us with your email address and what you want us to tell him and we will pass it on as well.

Thank you again A. M. for all you do!