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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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. 


(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 ❤

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! 🙂

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 🙂
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 😉

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!

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