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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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! 😉

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! 😉

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!

 

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 🙂

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.

 

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.

Life with RSD by: Jen

Hey everyone!
I’m so happy to say that there is another blogger on here to share her experiences, rants, info regarding her life with CRPS,Etc!

On the right side of the page, you will see a menu with “Heather Lynn”, ” CRPS fighter Jen”, etc…

To read her updates/posts… You’ll just click on her name, and BOOM! It will be there! 🙂

There will still be the list of the latest posts on the side too!

For her first post, it’s her story living with RSD/CRPS.
From how she got it (which is an interesting story), as well as the challenges she’s endured.

All of our stories are different. Here is hers…

Thank you!
Heather Lynn

——————-

My life with RSD

*I was looking at my Facebook and came across this – it’s my story I wrote back in ’99 for RSD Awareness Month in May.*

by Jen B.

January 15, 2005 was just another ordinary winter day. I had to get up early that morning and leave on a business trip to Tulsa, OK. I got to the airport, parked my car, grabbed my luggage and off I went. I got to my gate and sat for awhile. The plane was running a little behind. I was hoping it wasn’t too far off so that I didn’t miss my connecting flight at O’Hare. Finally they came over the PA and we were ready to board. I got on the plane (an RJ…or Regional Jet) and sat in my seat. The plane started filling up as I sat reading. The next thing I knew the flight attendant (bitch as I refer to her now) asked me and a few others to move to the back of the plane to even out the weight distribution.
No worries I thought, I’ve had to do this before, and I’ll have a row all to myself. So I grabbed my things and began walking to the back of the plane. As I was getting into my new seat, the flight attendant pushed up behind me and my left foot got caught on the back of the seat in front of me (as I was turning my leg to get in to the seat) and all of a sudden I felt the most intense pain, fell back into the seat and almost passed out.
I looked down at my leg and it was crooked. My knee dislocated so badly that my ankle was actually cocked to the side. It took me about 30 seconds to get my bearings thru the pain and I said, “Help” to the flight attendant. Either she didn’t hear me, or she didn’t care but she walked by me and continued on to the front of the plane. So I started screaming, “Help!” Long story short, she wouldn’t get me help right away, just asked if there was anyone on the plane that could pop my knee back in so we could take off.
Luckily, the man sitting across the aisle from me had, had a bad dislocation and sternly told her that I needed medical attention. She himmed and hawed for a time (about 5-10 min had passed at this point) and I was trying to be as calm as I could be but was in so much pain and frustrated that this woman would not help me. Finally about 5 minutes later the pilot comes out and asks what is going on, why the door wasn’t closed etc and the gentleman across the aisle called him back. He saw me and immediately told the flight attendant to go call EMS and get Ice.
He sat with me, holding my hand, talking to me and holding the ice on my leg. Another almost 10 minutes goes by and the airport’s EMS boards the plane. They move me to this little chair and wheel me down the aisle, my leg hitting every arm rest down the plane. I was finally removed off the plane and taken into the terminal to be questioned by Airport Personnel and wait for the local EMS units to get there. Another 15 minutes goes by until EMS gets there and they take me to the hospital via an ambulance. Because I had a pulse in my foot, they wouldn’t give me any pain medicine until we got to the hospital. Finally, at the hospital, the dislocation is so bad that they have to put me under to re-set my leg. I wake up, still in pain and am taken for x-rays. They release me later on pain med’s, crutches and a leg emobilizer and tell me to follow up with my Ortho.

I see my Ortho and he says you should be fine in 4-6 weeks, stay on the crutches, take the pain med’s and sends me to PT. 2 weeks later I realize the pain is getting worse, not better. So he sends me for an MRI. That comes back clean, other than severe bone bruising. A few months later, I am in his office again, in a lot of pain, frustrated and don’t understand why this 4-6 week injury hasn’t healed. Luckily my office was letting me work from home because I couldn’t drive. I take my pants down and he got this scared look on his face. Then begins to ask me different questions about the pain. Is it burning? Yes. Is it throbbing? Yes. Temp sensitivity? Yes.Then he asked me to describe what bothered it. I told him I couldn’t even let my PT touch my knee, that water hurt, it hurt to shave, it hurt to have clothing on. Then he told me he needed to touch my leg but would be very gentle. I love him to death, but wanted to kill him. After feeling both legs, both feet and noticing color differences, and temperature differences he looked sadly at me and said those dreaded words –

[“You have RSD”. I said okay lets fix it. That is when he told me we couldn’t fix it and that I needed to see a pain management specialist. He also gave me what little info he had on it and told me just to go home and Google it.]

So I did and ended up crying the rest of the day. It was that day that I knew my life had changed forever. The next day I called my work and told my boss about my diagnosis and he said they would be putting me back on workman’s comp and I was no longer allowed to work from home. A year after it happened I received a lovely letter from my employer saying that my employment was terminated, but I was a valuable asset to the company and they would welcome me back with open arms when I was back to 100%. Not only had I lost a lot of the use of my leg, but I lost my job (which I LOVED) , my health benefits and financial security.

Within the first 6 months of my diagnosis, I became really depressed. I had always been such an independent person. I’ve learned that in my life, the only person that I could really depend on was myself, so that is what I did. Then my “friends” stopped calling, stopped coming over, my family is 3,000 miles away and I was a prisoner; not only in my house, but in my body. Then my ex mother in law suggested that I get a dog. I thought you are nuts, I can barely take care of myself, let alone a dog. My ex husband then moved in with me for a few months (which was very hard for me to even think about doing) to help take me to Dr’s appointments, help me with Bear, do the grocery shopping and just to help me. I can never thank him enough for doing that. But after a few months, we started fighting a lot again (NO we weren’t anything more than friends…NO, NO, NO!) and it was putting more stress on me so he moved back with his mom. But I am so blessed that his whole family, and my close friends out here have helped me whenever I need a ride, if I’m having a bad day and can’t go out. Not to mention they have been there more importantly emotionally, more-so than my own family. Honestly, I’m not even sure that my family really knows what RSD is. When I’ve gone home, the few times I have since getting RSD they do know that I am not the person I was before…but don’t really get the whole thing because they don’t see me often. I cannot drive far (I have a stick and it’s my left leg) but luckily I can still drive around town and can borrow a car if I need to drive further.

The first pain management Dr that I saw almost immediately wanted to put me on an SCS without trying anything else first. I was still in shock about everything and he wanted to implant me with this bionic device?? He tried a block in my knee (can you say OWWWWW) and then said he couldn’t help me. So, went to another one who treated RSD patients. I started getting a bunch of blocks in my back (at least 30) , tried tons of med’s, had an EMG, 3 yrs PT (land and aquatic) , trigger point injections, Chiropractor, Massage, Creme’s, TENS Unit, High doses of Vitamin C, Lidocaine patches, desensitization techniques, pilates, stretches, psycho therapy,etc. I was on crutches for 8 months, another year on a cane, and now just need to use the cane when I need it. I am fighting with my pain management Dr now because he’s dead set on blocks (some work, some don’t but not enough) and an SCS. But I’d really like to try the K, and at my appointment with him Monday I am going to talk to him about it, as well as accupuncture. What angers me, is that he teaches at the hospital in Philly where it is offered and he’s not once brought it up to me. I’ve been diagnosed with RSD by 5 Dr’s and still see my neurologist, Ortho and pain management Dr.

My RSD has now spread thru my entire left leg, and lower left side of my back. As you all know sleep is very hard to come by. I sleep maybe 2-4 hours a night, but am tired 24/7. I never have much of an appetite, memory and concentration problems ( I used to love to read, but it’s so hard now! Grrrr) and have also developed a thyroid problem which my endocrinologist thinks could be due to my RSD. I’ve gained weight from the RSD med’s, and my thyroid which cracks me up because I barely eat. I am in pain 24/7 and forget what it feels like not to feel pain. Cold water, cold weather, wind all make it worse. I feel like a human baromiter at times…I can always tell when the weather is going to change. I’ve recently had a dental procedure and my mouth hasn’t been the same since. My bowels are always irregular, sweat, night sweats, have problems controlling my temperature. I’m either really, really hot, or really, really cold. Muscle cramps and spasms. I can’t sit, stand or walk for long periods of time. Laying down with my leg stretched is the most comfortable thing for me. I don’t know what my future holds. I am single, supporting myself on my own, and it honestly scares the hell out of me…not having financial security.

While a lot of bad things have come out of this disease, a lot of good has come out of it too. I realized the people who truly care about me….because they are the ones who are still in my life, and have stuck by me thru everything. Because of RSD, I have met the most amazing, courageous, loving people, who I am proud to call my friends, but in my heart are now my family. Because of RSD, I met the love of my life, and he saw thru the RSD and saw me for me. Even though he’s not here anymore, he showed me that even though I have his disease, I still deserve to be loved and supported by a man. I’m glad that I am still able to have a smile on my face, and my sense of humor. Humor helps me cope a lot…as well as music. I’ve realized what a strong person I am, how stubborn I am (must be that I’m type A and a Taurus), and not to take anything for granted. Just the simple things like walking, not feeling pain, shaving your legs lol….it may sound stupid to most, but for the people who suffer with this disease it would mean the world. The Dr’s told me that I would never be able to hike, or to run again. But I did. Yes, it was a little hike (not what I had done before) and a 10 foot run, but I did it! It’s also let me think a lot about something I love to do – write. I’ve always wanted to write a book and am seriously now thinking about it. Just wonder, would anyone read it?

*In some ways I’ve come to peace with having RSD, and while I hate it, I love it because it is a part of me…it’s who makes me who I am. Just like it makes you, who you are. It’s a part of us, but it’s not everything.*

**We have RSD, but it doesn’t have us. And we will fight it together, until we find a cure.**

*Every little part of you is magical. Yes, even the parts that hurt, even the ones that are feeling disease right now. It’s alright to love what is in pain. More than alright, that’s exactly where your love is needed the most. So why not touch that part that hurts and smile at it, at yourself through it, and whisper: ‘I love you.’