Heathers hope: March Update!

Hey everyone πŸ™‚

Sorry it’s been a while since I’ve posted any real updates. I’ve been working hard on my other blog, http://www.heatherstreasure.com which is a beauty/lifestyle/fashion blog!
I figured it was good for me to focus on something else, besides my CRPS for a bit.

I do have a lot to share with you. A lot of updates! And I am thinking the best way I am going to do that, is through a video tonight ;-).

This way, I don’t have to type it all out, and bore you all hehe.

*Important: I recently hit my one year anniversary of having this blog! Time flies!
I had to update my domain name, and instead of going with .org (since this isn’t an organization) , I went with .net.*

My hope, is that this blog will transform into an outlet for myself, as well as other CRPS fighters to share their stories, experiences, photos, etc… Making it a small network, I think? I hope?
With that being said, if you’d like to share any/all of the above, PLEASE email me at Hope4yourcause[at]gmail.com! We do not need to put your real name on the blog if you’re not comfortable with that.
So, this blogs URL is now http://www.hopeforyourcause.net!

The last thing I wanted to quickly share with you, is a video of mine from last September (I hope I’m right about the month).
It’s an actual update at that time, I am talking in the video and sharing information.

The only thing I didn’t know at the time, is regarding my spasms.
They were spasming throughout the whole video, it was just hard to tell for some reason.
But! If you look in between my toes (where they meet my feet), you’ll see the area in between my toes going up and down.
This is because I have discovered that my toe spasming is actually caused by the muscle (I’m assuming it’s a muscle lol) that is behind my toes. That’s the actual area that is spasming in that part of my foot, which is why my toes wiggle as if they are waving to you at times.

Some of the info in the video is out dated (I don’t use the bone stimulator anymore). But, I wanted to share this with you because the spasming in between the toes, is very obvious.

**CRPS fighters!**: Does anyone else with CRPS notice this with their toes? (Spasming in that area)
I’m very curious to hear from you guys.
~Those of you who’s CRPS started in your upper body, do your fingers spasm? Kind of in the same ways as the toes do? Do you notice a specific muscle/area that goes crazy the most?

*I’d love to hear from you all! Please leave a comment below If you’d like to share πŸ™‚
(These types of things really do help others know that they’re not alone. Please help and get the word out, that they’re definitely not alone!) *

Anyhoot! Here’s the video (about 6 months old)

Ps: feel free to check out my “CRAPpy CRPS” feet on YouTube. My user name is MMorheather. (I don’t promote it often. Because it’s literally all of my feet lol. I use it mainly as a reference, for situations like these). But there are a lot of videos on there, sharing what life is like with CRPS.

Thank you all for stopping by!
I hope everyone has a low pain week!

Love always,
Heather Lynn

Oh yeah! If you have twitter, make sure you check out my other account, @urockyourcause! It’s made for my other blog http://www.letsrocktheribbons.info (but CRPS is shared on both,often!) thank you!

Close to finding a cause for CRPS?

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Hey everyone!

I wanted to quickly share with you a very interesting article that I came across, regarding CRPS/RSD.

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The title is called,“Researchers close in on Causes of CRPS”,by David Wild. WhichΒ was published on “Anesthesiologynews.com”, under Pain Medicine.

Here are two paragraphs from the article:

β€œCRPS is neuropathic in that there are characteristic neuropathic sensory abnormalities, but it also shows signs of central sensitization, inflammation, and autonomic and motor abnormalities,” Dr. Baron said.

One way of grouping CRPS patients is by looking at their distinct somatosensory dysfunctions, Dr. Baron said. Individuals with deficits in temperature detection but no allodynia, and with loss of small nerve fibers, innervation and nerve degeneration, can be classified as having a neuropathic disorder. A second cluster of patients can be seen as having central sensitization, with normal temperature sensitivity but severe mechanical and thermal hyperalgesia. A third patient cluster may have inflammatory CRPS, with deep hyperalgesia and heat hyperalgesia but no hyperalgesia to prick testing, Dr. Baron explained.”

Please click here for the full article!

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I’d love to hear your thoughts on this article, whether you are a CRPS fighter or not.

I personally feel that we are so close to finding SOMETHING! I am not sure what… But I do feel that we are so close to discovering something that will help those of us with CRPS, get our quality of life back (Maybe not 100%, but any relief, is good relief!)

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CRPS fighters, what was your first thought after reading this article? Does it provide you with a little hope? Or do you feel like we are in the same position as before?

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Anyhoot! I hope everyone is having a great weekend! And a low pain weekend. I know this winter weather is BRUTAL! But, spring is on its way! yay!

Thank you for stopping by!
Love,
Heather Lynn

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Change in 10 seconds..

Hey everyone!

So.. I downloaded this app on my new computer, which allows you to find photos through your email addresses!

Best part? It can retrieve photos from 10 years ago! (Depending on how long you had your email address!)
It’s called “Lost photos”? I think?
.. I can’t 100% remember the name, but if you are personally interested in the app, leave a comment on this post, and I will check my computer for you :-).

Anyhoot!
I came across a photo collage that I made a couple months after I was diagnosed with CRPS/RSD (Mid June 2012).

It shows what happened at the time when I had my feet up (not necessarily “elevated/above the heart”. But, up as in.. Laying down).
Then what happened as soon as I started to stand..then back with my legs up in bed.

Keep in mind, this was almost 2yrs ago.
Things have gotten worse since then. But I’m happy that I found this photo, to show what CRPS/RSD is.. And why it is so disabling.

I also found this. 😦

2 years later…. It is now in both feet and legs, as well as both arms.Β 


(Left foot)


(Right foot- the foot I originally broke)

Those are just a few photos…

If you’d like… I do have a YouTube channel that I don’t promote much.
I have a lot of flares recorded, under “MMorheather”. If you’re interested, you should take a look.

If you’d like to send me your story to share on my blog, along with photos… I’d love it!
Please email me at hope4yourcause[at]gmail[dot]com. With the subject (CRPS story).

Thank you for taking your time to read this.

Hope all is well.
Sincerely,
Heather Lynn

Ps: I do have a gofundme account, my story is on the page,along with why I have a page. If you have a moment, please go to http://www.gofundme.com/LRTR2013
Thank you so much ❀

RSD/CRPS #1 Most painful disease

Hey everyone!

I know it’s been a while… I’ve learned that posting as often as I’d like, isn’t as easy as I thought.

Between this blog and http://www.heatherstreasure.com, and the everyday pain… It can get to be too much 😦

But! I’m going to try and post a little more!

I came across this website yesterday that lists the “Top 10 most painful diseases”. They list CRPS/RSD as #1, the most painful.

Although I do not agree with their definition or description of CRPS, I am “happy” that this person knew about it.

If you’d like to check it out, the link is right here:
http://t.co/sjH5Sw8YpY

I’m not sure how credible it is.
But hey, in my eyes… It’s awareness.

I hope everyone had a great weekend! And I will be posting an update very soon! (I have a new computer, which makes it a lot easier to post things in general!)

Thank you for taking your time to read this!

Love,
Heather Lynn

PS: I am going to start sharing my gofundme page again..
I’m in the process of applying for disability …again. And was told it could take up to a year to see anything. I haven’t had any income in 2 years now.
I was able to get health insurance, but it’s $250 a month. Any money that is donated, will be going towards paying for my health insurance and medications.
http://www.gofundme.com/LRTR2013
Thank you so much ❀️

CRPS Tool Box: I was ON AIR w/ JoeyGiggles!

CRPS Tool box:

Joey Giggles is known across the web for starting an online community, that supports one another ( #JGF family).

He has two radio shows on Blog talk radio. One of them is called “RSD and you”!

To check out his shows archives, and to listen to upcoming shows, click here: http://www.blogtalkradio.com/joeygiggles

I was very fortunate to have the opportunity on November 6th, to be apart of his show!
Callers called in to ask questions too! One of those callers was Barbie Ingle, She’s such an amazing woman, and truly an inspiration.

Make sure you click the link below,and press play!(Under Joey Giggles photo)
I come on the show about 15 minute in!

http://www.blogtalkradio.com/joeygiggles/2013/11/06/rsd-and-you-show

Here’s a link to a recent show he did with a woman who discusses Calmare Therapy!
(I highly recommend you listen! Especially if you’re a CRPS fighter, wanting more info on a treatment that has helped many!)

http://www.blogtalkradio.com/joeygiggles/2013/11/14/rsd-and-you-show

If you’ve been following my blog, then you may know that Calmare therapy is the route I want to go as well!

I am so excited to hear all of these success stories in the past few weeks! Woot woot! πŸ˜‰

Here’s a link to another source, where a CRPS fighter talks about their experience with Calmare!
http://www.rsdcrpsdoesntownme.com/articles/an-insiders-view-of-calmare
( from http://www.RSDCRPSdoesntownme.com)

*Also, I’ve been receiving many emails from CRPS fighters, as well as caregivers wanting to ask me questions.*
I love it! You all are so awesome!
If you’ve emailed me, and I haven’t replied.. Please leave a comment on a post on my blog and let me know that you sent me an email. Or, if it’s a question you have, you can leave it in a comment and I’ll reply that way! I ended up finding a couple emails in my spam folder.
((I approve all comments! I will not approve a comment if you ask me not too! No worries!))

So, let me know! I don’t want you too think I’m ignoring you!
My email is hope4yourcause[at]gmail.com! πŸ™‚

Please share this post, and help spread awareness about CRPS/RSD!

Also, I just posted a post called “Attention CRPS fighters!” … If you are a CRPS fighter, PLEASE check out that post & answer 1 of the questions (or more-up to you) by leaving a comment on that post. More info is provided on the post! πŸ™‚

Thank you for checking this post out! Be sure to listen to me on Joey Giggles Radio show!

Love,
Heather Lynn

Ps: For more info, go to http://www.RSDhope.org.
Their site has amazing up-to-date information about CRPS, Treatments, support resources, etc!

 

Attention! CRPS fighters!

Hey CRPS/RSD Fighters!

I want to try something, but I really need your help, in order for this to be successful.

My ultimate goal here, is to spread awareness about CRPS and share what it’s like to have it.

What do I need from you?
-Below are a few questions. It would be so helpful if you answered one of them for me! You are definitely more than welcome to answer all of them!

*Please* leave your answer(s) in the comment box below this post! Please put the # of the question(s) that you chose,in front of your answer (so we know what question(s) you chose)

After you post your comment, could you please please please share this post on your FB/Twitter,Tumblr,Blog,etc? (Anywhere that other CRPS fighters will see it! The more people who participate, the better)
Thank you! πŸ™‚

What are the questions? Drum roll please….

#1) In ONE sentence, how would you describe what CRPS is?

#2) In ONE sentence, how would you describe what it feels like during a CRPS flare? (To someone that does not have CRPS)

#3) In ONE sentence, please share ONE thing that has changed the most, after being diagnosed with CRPS?

#4) In ONE sentence, what advice would you give to a newly diagnosed CRPS fighter?


( http://www.RSDhope.org)

What am I planning on doing with the answers you give me?

I am going to make another post with your answers! The post will be geared towards spreading awareness, sharing the many different ways it affects people differently, helping those who don’t have it..understand what it’s like to have CRPS, as well as provide insight for those who are newly diagnosed.

I feel it is so important for people to see how many people have CRPS, and how different things are between each person.

It’s also important for those who have CRPS, to know that they aren’t alone.

In your comment, please leave your name (at least your first name) And feel free to leave your email/twitter/FB/etc!

I wanted to make the post before the end of November (CRPS awareness month)-But, I haven’t received many answers from other CRPS. 😦
Please help me spread the word by sharing this post, and answering the question(s) you choose, by December 5, 2013!

Thank you so much!
I look forward to reading your answers!

Love,
Heather Lynn

Twitter & IG: @aBlondeBabe
FB: http://www.Facebook.com/HLynnMD

 

#WearOrange4CRPS

Hey everyone!!

This is a reminder for “Operation Wear Orange!”.

In 2 days,(November 5th, 2013) I am asking everyone to wear something that is orange (T shirt, socks, pants, bracelet, hat, shoes..etc!) it can be anything! For CRPS awareness day!
Make sure you snap a photo, and send it to me! ( Over FB, twitter, email, Instagram,etc..)
**All of my information above, is on the original post!**
Click here for all the information πŸ™‚
http://hopeforyourcause.org/2013/10/17/opwearorange/

I remember those of you who did this for me last year, it meant the world to me!


(I took this from my IG- look at all the people who showed support, just by changing their avi on FB! That wasn’t even everyone!
I’m so upset I lost all the photos that people sent me of them rocking their orange on my phone :-(. But not this year!)

Please help me this year, and #WearOrange4CRPS πŸ˜‰

Thank you so much!

Love,
Heather Lynn

 

RSDhope.org update from Keith Orsini!

October updates on RSDhope.org from Keith Orsini!

Three new awesome things going on:

1) A wonderful story on CRPS Awareness, that a husband is doing for his wife. It involves placing the National CRPS Awareness Ribbon on Race Cars! Click here for more details!

2) A CRPS Patient was on the TV Show “The Doctors” the other day. She shared her journey with CRPS, and information was given to the public about CRPS!
I have placed an article about the show and included the links to the various video segments on there as well – Click here to watch!

3) Reminder: November, is NATIONAL CRPS AWARENESS MONTH ONCE AGAIN!! Click here for information!

If anyone needs a copy of the official National CRPS Awareness Ribbon,contact Keith O., via the website or his email.
They can send them the free jpeg of the ribbon for their website, FB page, twitter, t-shirts, tattoos, hats, horse blankets, pet sweaters, whatever they want! Click here for a copy of the ribbon!

Sincerely,
Keith Orsini
American RSDHope
www.rsdhope.org

*Note from Heather Lynn*
Here’s a link that shares the story behind the National CRPS awareness ribbon! This is from Keith’s blog!

Operation Wear Orange!

Hey everyone!

– Would you like to put a smile on millions of faces?
– Would you like to show your support to every CRPS fighter?
– Possibly change lives in a positive way?
*(By doing something so simple, and possibly even fun!? Without spending a dime!)*

~Keep reading, and you’ll see what “Operation Wear Orange!” Is all about! ~

For those who don’t know, November is CRPS awareness month! (Yep! We have one of those! But, we need it to start spreading more awareness)
There is an amazing organization called Power of Pain, http://www.powerofpain.org, they call next month “Nervember”, which is catchy and appropriate!
You should definitely go check out their website! They provide information about many forms of Chronic pain!

Through out the whole month, I am going to try my hardest to post something new everyday, whether it’s information, an update, some inspiration, who knows- maybe just a goofy picture of my “catdog” for some giggles! πŸ™‚

Another important thing about next month (besides my Birthday ::cough cough:: the 14th ::cough cough::)
Is CRPS awareness day! Which is on November 5!

It would mean the world to me if you all will “celebrate” this day, and show your support, by wearing orange! It could be an orange shirt, tie, socks, pants, jewelry,etc!


(This was me last year)

If your having a conversation with co workers, friends, family, or even strangers… Try to spread awareness about CRPS!

————

This is where “Operation Wear Orange!” Comes into play!

-For those who rock orange on November 5th, please take a photo and either:
Tweet it, FB it, or Instagram it (and tag me @aBlondeBabe) with the hash tag #WearOrange4CRPS!

(If you don’t have any of the above, feel free to email me @ Hope4Yourcause@gmail.com!)

-I will not only make a huge collage (or hopefully collages), that you will be apart of, and will be posted on my blog!

**IF WE CAN GET OVER 100 PEOPLE TO PARTICIPATE,THEN:**
I will pick 2-3 winners, who will win a prize! πŸ˜‰

Ultimately, you will be showing your support to millions of people who are fighting this debilitating condition 24/7. Words can not describe how much that would mean.

**If there are any companies that would like to donate items/offer their services, for the challenge winners, please email me at:
Hope4Yourcause@gmail.com!!**
Your business will be promoted through out the month of November (CRPS awareness month) on this site, my personal twitter, letsrocktheribbons.com, LRTR’s twitter account ( @urockyourcause), blogsbyheather.tumblr.com, http://www.facebook.com/HLynnMD and my personal FB account.
*During and After the month of November, your logo(or a photo of your choice, that represents your business) will go on the side of this site with the other “Supporters”. Your photo/logo will be directly linked to your website!* πŸ™‚

*I will post a reminder on November 1st*

Until then, please share this post through out social media, to your loved ones, and mark your calendars! “Operation Wear Orange!” #WearOrange4CRPS!


(Be sure to check out my other website which is dedicated to spreading awareness about numerous causes! http://www.letsrocktheribbons.info (-: Where you rock your cause!)

**Let’s educate the world about CRPS, and help us put out the fire**

Again, please share this post all over!
-How awesome would it be if 100 people participated in “Operation Wear Orange!”??
500 people?!
1,000 people!!?
It’s possible… But not without you!

Thank you so much
Love,
Heather Lynn

 

CRPS tool box: Words of wisdom

Here are some quotes that I found, In hopes that it may help those of you going through some hard times.

And to those of you who are in the large family of CRPS/RSD fighters…

Never give up hope ❀

There are so many others that I just love!

Many of us have a special quote or saying, that helps us get by…. Everyday.

I’d be honored if you’d share your favorite quote… Or some words of wisdom!
Please leave a comment below, with your words of encouragement!
I’m hoping there will be enough, where I can share them in a separate post (with credit given)! Unless you’d rather me not share them in a post, just mention that in the comment, and I won’t.

Thank you for coming to http://www.hopeforyourcause.org!

Remember.. “Always give hope the time to float…. Because it will!”

Love,
Heather Lynn

Ps: make sure you go to my other blog and show some love! ❀ http://www.heatherstreasure.com πŸ™‚