Heathers hope: March Update!

Hey everyone 🙂

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 🙂
(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!

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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! 😉

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! 🙂

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! 🙂

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!

 

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! 🙂

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! 😉

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!* 🙂

*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 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! 😉

 

CRPS Tool box: StudioSox

Hey Ladies!!

There is a special product that I’d like to share with you today.
I contacted a company in California after coming across their website a month ago.

As I’ve mentioned in my blog, I was diagnosed with Complex regional pain syndrome (CRPS) in March 2012. It’s a syndrome that affects the sympathetic nervous system. Mine developed after breaking my foot. For more information, please go to my other blog, http://www.hopeforyourcause.org (which shares how it’s been, living with this debilitating condition).

Anyhoot! As of now, there is only one pair of shoes that I can wear, without the pain getting so bad, I black out. Skechers “GoWalk’s” are the shoes that I am talking about.
– One downside to these shoes, is that they aren’t very stylish(Or at least not my style).And you can’t really wear socks with them, unless you’re wearing pants to cover top part of the shoes. With my CRPS, I have to wear socks with any type of shoes.
So, I’ve been in a dilemma for a while now!

This is why I am extremely happy I came across http://www.StudioSox.com!

As it states on StudioSox’s website:
“STUDIOSOX® is the preferred footwear of professional and devoted movement enthusiasts: Pilates, Yoga, Dance, Gyrotonics and Martial Arts.
STUDIOSOX® are available in three styles: Tabi, Open and Closed Toes with a non slip, no skid sticky tread for performance, hygiene and style.”

Now, I am not currently able to do yoga, Pilates,Dance,etc. BUT! I can 100% see how women LOVE wearing these “Sox”, while they are working out!

I think it’s important to share with you, how CRPS affects your skin, as well as body temp.
before I go on…

After reading the photo above, you may have a better idea of why a pair of socks that are very thin, light weight, AND have tread on the bottom(so I don’t slip and fall) are PERFECT for me! I can easily say that “StudioSox” are a new favorite product of mine! And definitely a must have, for those of you who have CRPS/RSD in your lower limbs!

For those of you who are into Yoga, Pilates, Martial Arts,etc… I HIGHLY recommend you try these socks! They have 3 different styles:

And each serve their own purpose! Go ahead to their website http://www.studiosox.com and click on the different styles, you’ll see the different descriptions/purposes right there! 🙂

You should also check out their Facebook page! By clicking here:
https://facebook.com/profile.php?id=206127326077542&__user=621740709

Overall, “StudioSox” will be something that I recommend to anyone and everyone! Well… When it comes to Ladies! Hehe!

I want to personally thank Candace Fair, for sending me a couple pair of these awesome “sox”. They have truly made a difference with the shoes that I wear! I have also noticed that they don’t add additional heat to my feet, as a CRPS flare approaches. Thank you so much!

Thank you for stopping by! Come back very very soon! 🙂
Love,
Heather Lynn

Disclaimer: This is not a paid/sponsored post. I did receive two pair of Studio Sox, after contacting the owner and explaining my health condition. StudioSox did NOT ask/require me to write this recommendation. I wrote this post because I feel this product should be shared, due to its great quality. It is also important to me to share, in hopes that it may help others with the same condition as me.*Results may vary!*
Everyone is different, regardless of the reason for using the product.

 

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

Brooke Lewis inspires

Hey everyone!

I want to share with all of you,a very special woman I know. She is an inspiration, a role model, An advocate for many causes,a mentor, and much more.

Her name is Brooke Lewis. If you look on the right side column, scroll down to “Supporters”, you’ll see Brooke’s website first! All you need to do is click on that photo, and you go right to her website!

Brooke Lewis is a beautiful actress, in the horror genre! She is a goddess in the entertainment industry!

The one thing I love so much about Brooke, is her dedication to help others.
She is a certified Life Coach, and an amazing one at that.
She also works with teenagers, with many things they are dealing with. Two things that Ive noticed, is her passion to help teens with their self esteem and problems with Bullying.
BUT! She does much more than that during her “Tween twalks” with Ms. Vampy!
(To read more about the amazing things Brooke has experience in, please go to her website!
By clicking here: http://beyouandbefearlesslifecoach.com

Some of you may be wondering… Who’s Ms Vampy?!
…Well, my lips are sealed 😉 Go to the site above, and read about Ms Vampy! As well as who it is,and what she does! 🙂

Below, is a video that Brooke shared with me the other day, when I was really down in the dumps. I was taking to her about having CRPS, and how it’s taken so much away from me.
Those of you with a health condition, or if your loved one has a chronic health condition. Please watch her video!
It’s only a couple minutes long, and it really shows you how amazing Brooke is.

If you are interested in talking to her as a life coach, go to her site, and contact her!
Make sure you use the Promo code: RIBBONROCKERS (all caps)
Doing so, will save you a few dollars!

I want to thank you Brooke, for being such an amazing, genuine, inspirational woman. And for being there for me,when I needed some extra encouragement.

Those of you with Chronic pain, I highly encourage you to get in contact with Brooke Lewis, she is an amazing Life coach.

Again, her website is: http://beyouandbefearlesslifecoach.com

Make sure you follow her on twitter! @BrookeLewisLA! 🙂

Thank you for taking your time to read this!
Until next time, I wish you all pain free-(low pain) days!

Love,
Heather Lynn
http://www.hopeforyourcause.org
http://www.HeathersTreasure.com
http://www.Letsrocktheribbons.com

 

CRPS tool box: Dry skin and Burt’s bees!

Hey everyone!

I wanted to share a product with you, for those of you with CRPS/RSD, or any other type of condition that limits your ability to use products on your skin.

With CRPS/RSD, the limb(s) that are affected, tend to get extremely dry. If your like me, using any type of lotion is a NO-NO! I’m either terrified of the lotion causing a flare, OR it hurts really bad to apply/rub it in.

One day, my feet (which both have CRPS) were extremely dry…To the point that my skin was starting to crack. I needed to figure something out! Or else my CRPS would just feel even worse (if that’s even possible).

My father, who absolutely LOVES Burt’s Bees, brought me a bottle of lotion to try. I was very hesitant at first, but realized that I needed to take care of this! So, I started to apply the lotion very gently. I was able to apply the lotion on both feet! Not only did it completely take care of the severe dry skin at the moment, but it wasn’t painful to apply!

I will say, it wasn’t 100% pain-free, but HELLO! with CRPS, touching the area at all hurts really bad. It wasn’t the lotion that hurt, it was just the fact that I was touching my feet in general.

So…What is this magical product?!

It’s Burt’s Bees ” Naturally Nourishing Milk and Honey body lotion”!

This is what the description on Burt’s Bees website, says about the product!

“Soothing milk meets honey in this nourishing yet lightweight natural moisturizing lotion. Honey acts as a natural humectant, while aloe and sunflower oil soothe and moisturize skin.”

It makes sense to me… It’s all natural, and does not have any strong fragrances or any crazy stuff like that.

Those of you with CRPS/RSD, there is still hope. Never forget that. There are new treatments, products, technology, etc. coming out everyday that is available to make this horrible condition somewhat bearable.

Never ever give up hope.

The only bad news is, at least where I live… this particular lotion isn’t available. I don’t know if it’s because it sells out before I get to it, or if it’s because they don’t supply it. THIS COULD EASILY JUST BE WHERE I LIVE!

Either way, you can find this magical lotion here: Milk and Honey Body Lotion

Those of you who have CRPS/RSD, are there any particular products that you use, for anything (not just dry skin), that you swear by? Products that help your comfort/pain?

If you do, PLEASE share them! By leaving a comment on this post! Share and Make aware!

Thank you all for reading this,and I really hope this helps some of you who don’t know what to do about your dry skin/don’t know what kind of lotion to use.

It’s the small things in life that make a huge difference.<3

I hope you all have a pain-free/low pain day!

Love, Heather Lynn

Disclaimer: This is not a paid/sponsored post. I did NOT receive any compensation for writing this post, not any money or free products. I wrote this post, to help others with the same condition as me.