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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Quote by JFK

> “We can have faith in the future only if we have faith in ourselves.” – John F. Kennedy

Always remember, to never give up hope. And to have faith in yourself, you are strong enough to fight CRPS.

A treatment …and hopefully a cure will be found. Maybe not tomorrow… Or next week, but it’s coming!
We got this! πŸ˜‰

Happy thanksgiving everyone!

Love always,
Heather Lynn

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

 

Color changes during a flare..yuck

Hey everyone!

It’s things like this, that are hard for me to share…. But I feel that it’s necessary, so you can see that CRPS/RSD is NOT always an “invisible” illness.

Click here for my most recent update that I’ve shared: http://hopeforyourcause.org/2013/10/06/heathercrpsupdate/
(It’s not all good) 😦

This video shows you what it looks like IN THE BEGINNING of a flare… Eventually it goes up to my mid calf, sometimes up to my knees.

Both feet are also usually involved.

But you can watch my feet change colors right before your eyes, as well as my toes spasming 😦

It’s very painful.


(Both feet are flared up. Can you guess which side feels like I have severe frost bite? And which one feels like it’s on fire?!)

Love,
Heather Lynn

Please check out my beauty & lifestyle blog!
http://www.HeathersTreasure.com!

If you’d like to help me raise funds for treatment, co pays, medical bills, medication, etc. I have a gofundme account. Please click here:

http://www.gofundme.com/LRTR2013

(I do post updates/photos/info/etc.)
Thank you so much ❀

 

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!

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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™‚

CRPS fighter-Heather Update 10/5

Heather Lynn- Update 10/5/13

Hey! Everyone!

I realized I haven’t provided an update recently, and a lot has gone on since 7/1/13 (my last update)…

Click here for that update (it provides a lot of info, involving me): http://hopeforyourcause.org/2013/07/01/heather-lynn-update-71/

*Those who are wondering how this all started*,click here: http://hopeforyourcause.org/2013/06/02/moves-like-jagger-auction-jewelry/
^^ That post provides my awesome story, on how I developed CRPS.

I have some good news and bad news.
The good news, is that I found an AMAZING doctor, and I highly suggest anyone with CRPS, to come and see him!

One thing he is known for, is how well he does ultrasounds, and how he uses them. He’s also worked with MANY patients who have CRPS. It was so refreshing to see a doctor who actually knew what CRPS was, how it effects all aspects of your body. He was able to tell me things about CRPS that I didn’t even know (which is rare,as many of your with CRPS know..)
He also has a Co worker who does ketamine infusions,and can give them to me regularly, not every 5 months. So, all of that is the good news.

But, the bad news is what the doctor found, while doing the ultrasound.
The ultrasound reads the activity inside your nerves. If they’re aggravated, the area on the screen turns red,where it’s the worst.
He checked 1 major nerve that goes from your mid thigh, down to the inside of your ankle. The whole nerve, from thigh to foot, was red..

Apparently, my nerves and my blood vessels are “at war”. My nerves are pissed at my blood vessels,and my blood vessels are pissed at my nerves…
He checked the 3 major nerves that connect to my feet,and they were all the same. They are all damaged. 😦
All of this is what is ultimately making my CRPS worse, and the treatments ineffective.
I mentioned in my last update that they found bone marrow edema in 2 of the bones I broke 18 months ago…
Well, it’s those two things that I mentioned above, that’s causing the bone marrow edema.
It’s a horrible chain.. Pissed off nerves/Blood vessels~~> pisses of CRPS~~> causes Bone Marrow edema.
So, my theory about healing the bone marrow edema, is out the window.

The goal now, is to do everything they can, to help and relieve some of the pain. Enough to where I can comfortably start using my foot/leg again… Gain strength and get the muscles working again.etc.
So, we are going to continue the ketamine infusions (I’m getting 2 done in a 3-4 month span) then after that, the Calmare therapy.

Next Tuesday I’m supposed to get a
femoral sympathetic nerve block, and I’m not thrilled about that at all. But we shall see!
I just want my life back 😦

I will make sure to post more updates on here!
Make sure you check out my other blog! http://www.heatherstreasure.com!

Thank you all!
Love,
Heather Lynn
http://www.gofundme.com/LRTR2013

Ps: the doctor that I was talking about is in Silver Spring, MD & Bethesda,MD. If you’re interested in his information, leave a comment with your email address, and I’ll send it too you! πŸ˜‰

 

Loosing Hope-CRPS fighter Jen

*From: CRPS fighter, Jen Cope*

I look around. It’s after 2 am and the silence around me is deafening. Everything is so still, and so quiet, except for within me. I let out a yelp because I am in so much pain. That yelp turns into sobs and as hard as I try to control it, I can’t. I can’t control the cries coming out of my mouth, the tears falling down my face and the pain in my body.

I wonder if this is what hell feels like. To be in so much pain, to feel trapped inside of your body, to be trapped. This is how I feel.

I never realized how much the medicine I took for my CRPS helped, until I was off of it. I’m good at putting on a brave face. I’m good at hiding the pain.

It’s something you get good at when you are diagnosed with a chronic pain syndrome, especially one like CRPS. It’s something I’ve gotten good at after many things that have happened in my life.

Everyone always says you are so strong. I am strong, but what they don’t understand is that I have to be. But sometimes, such as now, all I want to do is break down. Because I can’t be strong anymore.

* My main support system is thousand of miles away in PA. Nobody in my family understands. My friends here in AZ don’t understand. I feel so alone.* People don’t understand how important understanding and support are when you have CRPS.

I’m honestly scared. I don’t know what to do. I pray to God every night but as the lyrics in Grey Street go, I feel they “fall on deaf ears” and I don’t have time for deaf ears.

My health gets worse by the day and so does my faith and hope. I’m a positive person, I always try to look for the positive in any situation and I’m trying with everything I have to stay positive, to have Hope. To think of the greatness in people and in LoVE, and what the power of the combination can do.

They can move mountains, lift you up, change a life. This will change my life. This will allow me to get back on track with my medical treatments, be around people I so desperately need, afford me to find a job and pay your kindness forward. It will allow Heather to get her treatment and allow her to educate others on it and pay that forward. This is a gift that starts with us, but doesn’t end with us.

-Jen Cope

To go to the website where you can donate, receive information about both girls, updates, photos, etc.
click here: http://www.gofundme.com/CRPSsisters

To contact us, please leave a comment on here or email CRPSsisters@gmail.com

Thank you so much for taking your time to read this.

– the CRPS fighters