Category: updates

2 CRPS sisters with 1 goal

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Hey everyone!

This post is in regards to the new www.gofundme.com that Jen and I set up.

We decided to join forces and do this together because there is power in numbers! Time is not something that Jen or myself (Heather) have. Working together seemed like our best option. We both have completely different stories, but we have the same debilitating condition, and time isn’t either of our friends anymore. Below, are summaries from both of us, sharing our overall health status as of now, and why we are in desperate need of raising these funds.
We will both keep you guys updated on here, as well as on www.hopeforyourcause.org!

Please read our stories below, along with our personal goals!

Thank you again!

Heather’s Story:
On March 22,2012, I was taking down a David Beckham poster, when I was done,I hopped off the futon, did some weird Dance move,and landed on my foot as it was turned to the side.
-Now, 18 months later, it has spread 100% into my other foot, as well as my arms. I’ve tried numerous treatments, but my body isn’t responding to them like they should.
-Two months ago, I had an MRI done of my RT foot (the foot that I broke). They ended up finding Bone Marrow Edema in two separate areas.
There are ways to treat Bone marrow edema. The common treatments that are very effective to get rid of the bone marrow edema, would negatively affect my CRPS.
At this moment, we are trying a “Bone Stimulator” to treat the Bone marrow edema. That’s the only thing the Doctor could offer.
-I have a feeling that if we can heal the edema inside my bones, my body would respond to the treatments. And ultimately remission can happen!
-Time is not in my favor though. My insurance is dropping me in November bc I am turning 26. I can’t work a real job, so I haven’t had any income for 18 months.
– Getting the Calmare Therapy is my last hope.
For more info/updates about my story, go to hopeforyourcause.org

Jen’s story:

I was diagnosed with RSD/CRPS 8 years ago after an accident and it has completely changed my life. I went from being healthy, independent, having a great job, owning my own house and being able to help others to where I am at today.

Since my diagnosis my CRPS has spread from my lower left leg, to my left entire leg, left side of the back, shoulder, and now due to lack of medical attention my left arm. I’ve also developed a thyroid condition which has spiraled out of control. I’ve lost my job, friends, financial security and last year my house: which has led me to where I am today.
I moved out to AZ last year. Since then my health has taken a turn for the worse and no health insurance or support here which is why I am desperate to get back to my DR’s and support system in PA. I’ve never been one to ask for help, but I can’t deny the situation I am in and the desperate help I need.

Both of us are CRPS fighters who could really use your help.
We both have a goal we need to reach very soon.

**Jen’s goal is to be able to move back home from AZ to PA, where her doctors are, as well as her support system. Her health is declining and needs to be under the care of her doctors and the ones who support her.
Goal:
*$500 to get car ready for drive back to PA hauling a Uhaul (brakes, tires, oil change).
*$500 for the Uhaul rental
*$1200 for gas, food and lodging for trip
*$ 300 for Storage for 3 months while I get settled
*$300 for a bed for where I’ll be staying
*$500 for Dr and meds first mont until I get insurance/job
*$1,000 misc. for the 30 day transition period after the move.
(And possibly during the move. In case the Uhaul is more expensive, or any of the other obstacles that may pop up)

Total goal amount: **$4,500**

Jen and I <~ photo with both of us, as well as the flyer we are passing around. Feel free to pass it around as well!
———–

*Heather’s Goal: is to be able to travel up to NJ for 10-12 days, to go see Dr.Cooney and receive Calmare Therapy. Which has an 85% success rate.
It’s a lot cheaper than HBOT, and is only 10 days long, instead of 35-40 days.
Goal:
*Calmare Therapy= $2,500
For a 10 day treatment.
* Travel expenses (Hotel & and airfare/or gas for the drive up there) = est. $1,500
* Misc.= $500 help cover medical bills and medications during the couple of months when I won’t have health insurance (Effective: November)
Total Goal amount: **$4,500**

Total for both girls: $9k!

Please go to www.hopeforyourcause.org to see more details/our stories!
You’ll see our names on the top of the site. Click on our names, and you’ll see posts by us!

**AFTER OUR GOALS ARE REACHED, ANY AMOUNT THAT IS ADDITIONALLY RAISED, A % WILL BE GIVEN TO www.RSDhope.org!**

Thank you all so much for reading this! If you would like to contact us for any reason, please email CRPSsisters@gmail.com!
Follow us on twitter too!
Jen: @LilMissJen23
Heather: @aBlondeBabe

Ps: You are able to donate any amount you’d like, please don’t let the raffle packages confuse you! Every dollar counts!

PPS: If you are interested in becoming a sponsor, please contact Heather as soon as possible at hope4yourcause@gmail.com to receive more details.

Becoming a sponsor does NOT mean you need to donate a large amount of money. We are currently looking for items/services that we can put in our raffle as well! Anyone who donates their services and/or items for our raffle, is automatically listed as a sponsor/supporter! Your business would receive a lot of promotion on www.hopeforyourcause.org, www.heatherstreasure.com, and www.Letsrocktheribbons.com.

As well as all social media sites (Twitter, FB, Tumbler, and Pinterest)

Thank you again for your support!

The link to our gofundme.com account is www.gofundme.com/CRPSsisters please feel free to share this link! We will be posting updates,photos,etc. as much as we can. Thank you.

Sincerely,

Heather & Jen

Related articles

Life with RSD by: Jen

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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.’

CRPS fighters needed

6 Comments

Hey Maria!
Yes! I would love to!
I hope you don’t mind that I’m sharing this comment in a post. I saw you write “Hi Everyone”, so I’m assuming this is okay 🙂

*Those of you with CRPS/RSD, please read this message below!*
If you’d like more information about Maria’s story book, and/or want to participate in it, Please EMAIL HER! Using the email address provided.

I think it’s a great idea! Anything to help spread awareness, is a priority in my book!
Make sure you click on the event link that she has attached!
Thank you all!
Heather Lynn

———————–

Hi Everyone:

I am on a New and Exciting Journey and would like to share it with the World through assembling an Inspirational CRPS Story Book with YOUR HELP!
We will have the ability to share 50 different creative views to reach out to touch someone.
We will bring CRPS Awareness to the World through OUR EYES!
Like I said I can only do this with your help.
If you are interested in putting your story in the Inspirational Story Book that I am assembling.

SEND YOUR STORY TO;
RSDCRPSInspirationalStories@yahoo.com

Blessings,

Maria
https://www.facebook.com/events/140434086160981/

Love BlogLovin!

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<a href=”http://www.bloglovin.com/blog/10212337/?claim=9nsabx95t2s”>Follow my blog with Bloglovin</a>

Hey everyone!

Everyone should get Bloglovin 😉
Where you can get all the posts from blogs you follow all in one place! It’s pretty awesome.

If you don’t have an account with them, it’s super easy!!
*And NO, you do NOT need to have a blog to join!*

All you need is an email address! With that, you can then start to follow as many blogs as you want!
Whether its a blog about health, sports, arts & crafts, fashion, etc!

Just make sure you click on the link above, to follow my blog 🙂

Thank you for stopping by!
I will be posting an update tomorrow, sharing info on a bone stimulator that I’ve been using. And why I’ve been using it!

Hope everyone’s week is going well.
❤ Heather Lynn

Follow my blog with Bloglovin

Related articles

NEVER use ICE with CRPS!

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**ALL of the information below is from http://www.RSDhope.org – They have amazing information about CRPS. Along with a lot of resources**

CRPS PATIENTS SHOULD NOT BE TREATED WITH ICE.

NOT ICE, NOT HOT/COLD THERAPY, NOT HOT/COLD CONTRAST BATHS THERAPY, NOTHING DEALING WITH ICE AND THE AFFECTED CRPS AREA.

ICE APPLICATION

It can make the CRPS worsen and/or spread. It can also accelerate the patient through the stages. This is extremely important for the patient to not only know but to make sure their Physical Therapist knows as well. Most Therapy Clinics have caught up on this, it has been known for many years now, but there are still a few out there who need the information. Don’t be shy about sharing it!

Patients can actually have their CRPS go into the next stage from repeated application of ice packs, and sometimes even from just doing the hot/cold contrast therapy

Ice will also cause the blood vessels to constrict more, reducing the blood flow to the extremities, increasing the pain, causing color changes, etc. but the real damage is to the nerve’s myelin sheath; basically, the protective cover for the nerve.The same is true for the bath therapy.

We know, it feels good at the time you put it on. We know it seems to make sense on some level, burning pain, apply cold. But in the end what you are doing is constricting the blood vessels, reducing the blood flow, and then when the ice is removed the vessels do not rebound because the protective sheath around the nerve has been damaged. More and more with each application, causing even more of the nerve damage you were trying to prevent in the first place.

Not all of these changes are visible to the naked eye, not all are noticeable immediately, and the effect is cumulative. For some patients, whose allodynia is more pronounced, those with a history of CRPS, or those with prior injuries/diseases/conditions even the application of ice in areas not affected by the CRPS can have the same effect.

HOT/COLD CONTRAST THERAPY

This can sometimes be called Therapeutic Contrasting, but whichever name it goes by the procedure is basically the same. It is the process whereby you are quickly changing the tissue temperature from hot to cold and back again, repeatedly. This is usually done by immersing the limb or even the entire body, using hot and cold water. How is this different from the usual method of applying heat or ice? By applying both in rapid succession it is an exaggerated form of both but it is typically done with water because it is more practical. Hot/Cold Contrast Therapy could be done with Ice & hot water, or Heat & cold water, depending on what part of the body is affected though.

Care must be taken with patients who have sensitivity to ice, high blood pressure, circulatory problems, where there are open sores, skin sensitivity, or CRPS. For a good description of Hot/Cold Contrast Therapy, CLICK HERE

Please make sure your Physical Therapist understands the role that ICE and Hot/Cold Contrast Therapy plays in the disease CRPS.

Doctor Hooshmand’s Ice Puzzle
RSD AND ICE – ICE AND CRPS
Neurological Associates
H. Hooshmand, M. D., P.A.
RSD Puzzle #102
Ice Versus Heat

In our study of ice versus heat tolerance, 87% of the patients could not tolerate cold. and 13% could not tolerate heat. The infrared thermal imaging showed that the ones who could not tolerate heat (13 %) had advanced stages of sympathetic nerve paralysis rather than nerve irritation (death of the sympathetic nerve fibers rather than hyperactive nerve fibers). The area of permanent sympathetic nerve damage in late stage acted like a leaky radiator, causing leakage of heat through the skin which resulted in warm extremity and secondary intolerance to external heat. Meaning that due to permanent damage to the sympathetic nerve fibers( after repeated ganglion nerve blocks or sympathectomy) the sympathetic nerves could not contain and preserve the heat originating from the deep structures of muscle, bone, etc. This minority of 13% of the patients did not have the hyperactive cold vasoconstriction of the skin seen in earlier stages of RSD. These heat intolerant patients would be classified as erythromelalgia, rather than the 87% RSD patients who have hyperactive sympathetic function with cold extremity and intolerance of cold exposure.

On the other hand repetitive application of ice freezes and coagulates the myelin (fatty tissue insulating large nerve fibers) exactly like ice freezes and solidifies melted butter. As the ice freezes the large nerve fibers, causing freeze damage to the myelinated nerves, the patient develops sensory loss and pain due to permanent damage to the large sensory nerve fibers. This aggravates the RSD by adding sensory nerve pain of non-sympathetic origin to the initial thermal sensory pain of sympathetic origin. As a result, Ice provides total anesthesia and relief of pain for several minute the same way as the hand becomes numb being exposed to snowballs in the winter. However, a few hours after the cessation of ice exposure, the pain recurs with vengeance due to reactive enlargement of blood vessels after the constriction of blood vessels due to exposure to ice. This phenomenon causes excellent relief of pain with ice treatment followed by not only aggravation of pain, but damage to the nerve fibers adding sympathetic independent pain (SIP) to the original sympathetic mediated pain (SMP).

The end result is aggravation of the RSD and SIP resulting in failure of nerve blocks and then the patient is told, “You do not have RSD anymore because the nerve block did not help you and the phentolamine test proved that you do not have SMP or RSD”. In most RSD patients ice makes the condition worse and can cause denial of diagnosis and treatment for the patient. One last comment: this study was on advanced cases of RSD. In early stages of RSD, without exposure to ice, there is far lower percentage of RSD patients who from the beginning suffer from permanent damage to large areas of sympathetic nerve fibers with intolerance of heat and secondary erythromelalgia. It becomes obvious that heat-cold challenge physical therapy is nonsensical because it end result is one temperature extreme neutralizing the other and ice challenge further damaging nerve fibers.

Please stay away from any ice exposure, even if you can not tolerate heat.

H.Hooshmand, MD.
copyright © 2013 American RSDHope

HLynn’s Treasure Bin!

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Hey Everyone!

I am in the process of making another website (which will be up and running by Sunday! 7/14). It’s called “Heather Lynn’s Treasure Bin!”, and will have a wide range of items available for purchase!

There will be items in HLynn’s Treasure Bin that I’ve personally made, items that have been donated**, as well as items of mine that have never been worn!
Before my injury, modeling took up a large portion of my time for 3-4 years! Through out those years, I have collected A LOT of clothing, accessories,and heels! Since it doesn’t look like I will be modeling in my near future, and I have a closet full of heels and clothing that I’ve never worn… I am putting the items in the Treasure bin!

-ALL PROFITS MADE ON HEATHER LYNN’S TREASURE BIN, ARE GOING TOWARDS MY TREATMENTS/MEDICAL EXPENSES

**The Companies and those of you who have donated items, to raise money for my CRPS/RSD expenses, I can’t express how grateful I am to have your support! Thank you so much!!**

**ALL businesses who contributed in any way is featured on my new website**

*An online Auction is still in the works! I am still in the process of collecting items! A date is TBD- and will be announced very soon!*

-If you would like to donate an item/services, please email me at hope4yourcause@gmail.com! Thank you so much!

Contributions can also go to:
http://www.gofundme.com/LRTR2013

Thank you all so much for everything. I am so humbled and beyond grateful. ❤

**One of the items that I have been making, and am now taking custom orders, are items made with Tulle!**

These items include: TuTu’s (for Infant and Toddlers), Wreaths, Hair pieces,etc.!

-The TuTu’s on the top section of that photo, are TuTu’s I’ve made!
* The Wreaths, Hair pieces, and TuTu’s on the bottom section, are just examples pulled from google images! I did NOT make those! I added them to this post, to share ideas! I am able to make any of the above & many more!

+ Favorite sports team colors
+ A special little girls favorite colors!
+ Holiday colors!
+ Favorite characters (Cartoons,etc)
+ Anything for any occasion!

Email me if you’re interested in ordering one or more of the items I just mentioned!
Hope4yourcause@gmail.com!
– Once I receive your order, you will receive a price quote from me!

*If you’re ordering a TuTu, I will need the infant/toddlers: Age, weight, height, and waist size. Along with the colors/theme you’d like me to use!*
From there, I will be able to provide a price for you!
(Size, # of colors, length of TuTu, will determine the price of the TuTu).
-*Make sure you add if you’d like a custom hair piece, and/or a matching onesie/top. I will provide the prices to those individually as well!*

Thank you all so much for your continued support!

Love,
Heather Lynn

ALL proceeds will be going towards my treatments & medical expenses for CRPS/RSD
Email me:Hope4yourcause@gmail.com!
Hopeforyourcause.org

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Care Packages for Female Soldiers!

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Hey everyone!

This post is actually not about CRPS! Crazy right? 😉 hehe

(Even though, CRPS started in the civil war. After soldiers who were injured in the war, never got better-they only got worse…
Today, there is actually a large percentage of soldiers diagnosed with CRPS/RSD as well..)

But! I will save that topic for another post on another day!

A friend of mine, Christina, is rounding up items to make some nice care packages for the WOMEN overseas!

Please read the message below! From Christina, on her twitter page @ChivetteBoots!

Lets get these ladies some items they both want and need!

I went online to get some ideas on items that our heroes overseas love to receive!
(Many of these items are listed for both men and women, but it’s not too hard to identify which items are geared for females!)


( The list above is a basic list that soldiers of both sexes have compiled together)


(Above is a little mini collage of items!)

A list of items that I can think of, off the top of my head (some are listed already in the photos) are:

– Shampoo
– Conditioner
– Body wash
– Shaving cream/gel
– Razors
– Cleansing wipes
– Nice smelling lotions
– Hair ties
– Hair Brushes
– Contact solution
– Lense cleansing wipes (for Glasses! But they work very well for cell phones, lap tops,iPads , iPods,etc!) THEY WORK WONDERS! For eye glasses! A girls gotta see,right?? Lol.
– Q tips & Cotton balls
– Tissues ( Pref. those portable Kleenex packs they sell)
– Chap Stick
– Face wash/ Face cleansing wipes (may be easier)
– Lotion for the face
– Sunscreen!
– tampons
– Pads/ Liners
– Deodorant ( Dove or something feminine)
– Nail files ( I don’t think they are allowed to paint their nails ,if they are-Please let me know and I’ll edit this!) – but,they still need to keep their nails short!
– Bright & colorful Wash clothes (To wash their face and stuff with)
-Sports Bra’s (A Variety of sizes)
– Travel size Landry detergent
– Landry bags (the type you can buy at CVS/Rite Aid- geared towards small items. This way, the ladies can put all their under garments in there to be washed. This way there is less chance of them getting mixed up with others stuff!!)
– Basically anything that you see in the “Travel items” section at the store.

*By sending them colorful items like that, even something as simple as a wash cloth, it provides a sense of “normalcy”.

I’ve spoken to many women who have gone overseas, and one of the main things they all said, was that they loved receiving things that made them feel “girly”.
Remember, these women are surrounded by A LOT if big, sweaty, and yes-sometimes smelly guys (lol sorry guys…it’s true. But it’s okay, we all still love y’all for what you’re doing over there! Thank you! <3)
So sending these women lotion that smells really good, some nice quality Shampoo & Conditioner, Body wash that will make the surrounding areas of the shower smell so good, would mean more to them than you’d think.

I know I’m forgetting things in the “Women’s hygiene” list above…if you’d like to add anything,please leave a comment on this post! For all the females reading this, try to think about the products you use at home… That you use to wash yourself, as well as items that you use to make yourself feel/smell good. Don’t the ladies overseas deserve those items too?! Yup!

((I do NOT know about the rules & regulations regarding Make up while overseas! But I also don’t see women making that a priority lol. I could be wrong,and if I am..please let me know! But I’d mainly focus on the types of items listed above!))

**NOTE: Everything MUST be sealed and in it’s original containers/bottles!!**

– Stationary ( paper, envelopes, pens, stamps,etc) so they can write home to their loved ones!
– Magnetic picture frames
– small photo albums- soft covers. Not the hard ones. (for them to place photos of their loved ones.
– Games! Especially any kind of card games (there are SO many! If you look in the card games isle of a toy store/Walmart/etc..you’ll see!) or even a few decks of simple playing cards.
– Crossword puzzle books
*Pretty much anything that can help make their time go by faster, and keep their brains busy*

– Individual Powdered drink mix (for water)
Like those Crystal light packets! Luckily, every company makes them now, so you’re able to pick out all different kinds of awesome flavors!

– Mio fit! drink mix! It’s very similar to the powered drink mix above! But *Mio Fit* has electrolytes and stuff in them! **Make sure you keep the seal on the bottles!!**
My personal favorite is the grape flavor YUM! That stuff actually gets me to drink more water (I hate water lol) but they have a million flavors!

-Poptarts, fruit roll ups, fruit snacks,etc.
We LOVE our sweets! 🙂

(NOTE: although we love our chocolate, I’ve read on numerous sites, not to send any kind of food, that will easily melt.)

– Plastic reusable containers
– Ziplock baggies

Etc etc!

**Please leave any comments with ideas of other items to send!** 🙂

——–Below is some info I found-not relating to the care packages that Christina is sending to the ladies.———

(EVERYTHING on this entire post can be used for any time of the year, for Men,Women,and even dogs! If you want to send over some goodies, this post can be used solely for ideas!)

Check out this link with some ideas to send to any soldier overseas!
http://www.helium.com/items/1569262-what-to-send-in-a-care-package-for-a-deployed-soldier

Two things I saw online, while putting this list together for care packages were:

1)

(Ha! I used to collect beanie babies! I still have them somewhere too! I will be sending these over!)

2) We can’t forget about the dogs that are serving for us overseas!


(I found this photo under google images. There was no identified source)

Many of those dogs are first line! And need to go for a good 90min of physical activity without any food or water!

Unlike humans, dogs can’t tell us when they need something. We usually find out before its too late.

Some things you could send overseas for the pups are:

– Portable/Plastic reusable containers! (For the owners to store food, and to put water in for drinking)

– Dog food (High quality)
-Treats
– Dog toys ( off duty)
– Animal beds
– etc.

Google “Care packages for service dogs overseas” you’ll see lists,as well as websites that actually have amazing care packages ready to go! You pay for them and ship them! Many of them have some high quality tools and devices for the dogs to use.
(Ex: Dog goggles or “Doggles”- for the times when they are running in the sand. It keeps the sand out of their eyes!)

Here is the link to find info about helping service dogs! http://operationmilitarypride.org/to-help-the-troops-try-helping-their-brave-dogs/

I want to personally thank all the Men,Women, and even the animals that allow us to celebrate holidays like today *(Independence day)* You are all heroes.

If you have any questions regarding the items for Christina to send overseas, please email her at beantownmeetup@gmail.com. Or on twitter at @ChivetteBoots!

Any other questions,comments,suggestions.. Please leave them on this post! Thank you so much!
Sincerely,
Heather Lynn

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Fight Like a Girl fundraiser

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Hey everyone!

I hope you had the chance to read my update (as of 7/1/13). If you haven’t, please read it when you get the chance <3.

I am trying everything, to raise the funds needed for HBOT treatments, in hopes for remission. (My update explains why HBOT is becoming more and more of my only option).

*Fight like a Girl club* is one of my all time FAVORITE non-profits! They have been for a very long time! I first discovered them, a few years ago when I started http://www.LetsRockTheRibbons.com! Their website is an outlet for fighters, survivors,caregivers,etc. to those who are effected by cancer and/or any other chronic disease/illness. I HIGHLY suggest you check them out! (* I have asked them if I could write for them, representing CRPS/RSD on a regular basis! Wish me luck!*)
http://www.fightlikeagirlclub.com


( One of their awesome posters!)

They also provide help, for those who really need it by helping to host a Fundraiser!
So! That’s what I’m doing! Below, you will see flyers with items to purchase!
**You can choose ANY color you want, and rock any cause you want! Although orange is CRPS/RSD’s awareness color- you do NOT need to choose a color to represent CRPS!**

Below, is a chart that is on Fight like a girl club’s website! It shows you the many different causes,and what the awareness color is for it! I am sorry in advance if the color for your cause is not available.

This fundraiser means a lot to me,not just because it is giving me an opportunity to raise funds to get treatment. But it’s giving others the opportunity to purchase something to represent a cause that affects them (either personally or for a loved one), knowing that a portion of the profit will be helping me as well.

**IMPORTANT**: I am looking for people who would like to be on my “team”.
By “team”, I mean individuals who would be willing to help me sell these items. I’d forward you the forms that FLAGC sent me (Order forms). As well as the flyers they emailed me, to be printed out (and save ink). They are just like the ones below!
If I am able to get a team together,then I have a higher chance at raising funds. I need to be able to sell AT LEAST 40+ items, to see any results.
If you are on my team, all you would need to do is ask your friends, family, co workers, followers on twitter/FB/IG/etc. If they’d like to help raise funds for a CRPS fighter,by purchasing items that represent a cause that effects them!**

*If you would like to be apart of my team, it would mean the world to me. I don’t have anyone in my team 100% yet. I will also have a special gift basket (w/all handmade items that you will love) for every person on my team,as a special thank you.*

If you are interested, please contact me ASAP!! If you follow me on twitter (@aBlondeBabe), then let me know on there and I will provide you more info! The same goes for Facebook! http://www.facebook.com/HLynnMD (public profile)
Or, if you are on my private account,then of course, contact me on there.

*If you do not have either, please email me at mmorheather@gmail.com* (I’ve noticed that I don’t always receive my emails, or I’ll receive them days later) I’m not sure if its because I check it on my phone or not. If you plan on emailing me,please leave a comment on here,letting me know! So I know to look out for your email. 🙂

Thank you so much! And I really hope I can get a team together. ❤

Below are the items available for purchase! If you are interested in purchasing any of these items and/or any of your friends/family, please contact me!
(Again… On here by leaving a comment- leaving your email address, twitter,Facebook, or email: mmorheather@gmail.com )

IMPORTANT:
**DO NOT ORDER OFF OF THEIR WEBSITE! OR ELSE IT WILL NOT GO TOWARDS MY FUNDRAISER!** 🙂


(Choose any color(s) you want!)

(FLAGC side wrap logo T!)


(Men’s Shirts!)

If you’re interested in ordering any of the above, I have an order form for you to fill out. And you will be paying through PayPal.(unless you order in person- With myself or a member of my team!) In that case, you will fill out the very short order form, and give the money in person. 🙂

*If you have any questions, please leave a comment on here, I will reply with the answer! Who knows, others may have the same question!* 😉

Thank you all sooooooo much! And I hope that you all check out http://www.fightlikeagirl.com!

Love,
❤ Heather Lynn

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Heather Lynn Update 7/1

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Hey everyone!

How is everyone doing?
I thought I’d write up an update since I’ve been going to a lot of doctors recently.
I also haven’t updated you all after my 2nd ketamine infusion & my thoughts so far on the Alpha-Stim!

I guess I’ll start with the “not really good news” first …
A couple weeks ago I had an MRI done of my RT foot (the foot that I broke). They ended up finding Bone Marrow Edema in 2 separate areas.
From what I’ve gathered online through research,and from the doctors, there is no cure for bone marrow edema. But there are treatments.
Actually, I should rephrase that, There are treatments available for people who are overall healthy (aka don’t have things like CRPS). The common treatments that are very effective to get rid of the BMEdema, would negatively effect my CRPS.
At this moment, we are going to try a “Bone Stimulator” in a couple weeks to treat the BM edema. That’s the only thing the Doctor could offer. 😦

**Here is a video I recorded a month or so ago… You can watch the nasty color changes right before your eyes 😦 this was a flare from a weeks worth of raining!**


( photo from http://www.fightlikeagirlclub.com)

So! Lets hope for the best! 🙂

Around a Month ago, I finished my 2nd ketamine infusion treatment!

I will say, I have noticed a significant difference in my mood (depression/Anxiety).
I also noticed for the first 2-3 weeks after the infusion, I was able to dream!!! It didn’t help me get to sleep, but when I fell asleep…I had *Dreams*! REM sleep! Woot woot!

I am able to get my 3rd infusion in August, I am hoping that I see even more results! If I don’t, then I won’t be able to receive anymore ketamine infusions..Each infusion I get,I notice an improvement somewhere though,I hope they allow me to continue.

**Next, The Alpha-Stim! **
First, I’d like to thank each and every one of you who donated on http://www.gofundme.com/LRTR2013 …
*Because of you all, I was able to purchase the alpha Stim, as well as cover a couple co pays for doctors appointments!*

The Alpha-Stim that I purchased, helps anxiety, depression, insomnia,and even **PAIN**!
I will say, I have noticed a difference over all! Except for the pain 😦
BUT! That’s because I had a *Heather Moment* up until a week or so ago. There is the part that clips to your ears (Which is the part I’ve been using) then there are two other parts.
Well….those two other parts are the parts that are supposed to help with pain.
I am going to be honest, I haven’t tried them. -One of the options for helping pain are patches (kind of like the TENS unit).
-The 2nd option are “probes”, which look interesting.
The reason why I am kind of scared to try them is because you must put them directly on the area that hurts. Since I have CRPS, there are times when even a blanket brushes against my feet! So,the thought of those things on my feet, freak me out!

*(both feet/legs are cherry red/blotchy… My pain was so bad, that I was sitting by the toilet,ready to vomit)*

BUT! I am going to start using the patches on my lower back, this way I’ll be able to see if they help my pain,then I’ll go from there!
(( A few months ago, I had to get an MRI on my lower back, and they noticed that I’ve developed arthritis))
If I notice a difference there,then I will think about the best way to be able to use those on my feet.

Over all, I am happy with the Alpha-Stim, I think it has made a difference in my over all mood(which is very important-to help control flares). 🙂

When I was at the doctors last Wednesday, My doctor pretty much told me that I can try the Ketamine 1 more time, if it works, then I’ll stick to that treatment forever (until they find more treatments or hopefully a cure!).

If it doesn’t work… Then I was only given two options:

1) the Back Stimulator (SCS)

2) Peripheral Nerve Surgery (Nerve surgery on my right foot)

*Neither choice is an option in my mind*

Not only have I spoken to numerous doctors,to get their opinions… But my gut is also telling me not to do either one of them.

-Surgery is never good if you have CRPS- Spreading occurs.
-Nerve surgery can be very dangerous to anyone! In my case, the specific surgery they want me to have could either A) help things B) not change any change anything. Or C) Makes things worse (which is a huge chance)

So… This kind of puts me in a “not so great situation”.

If you have been reading my blog, then you know that I’ve had my heart set out for HBOT treatments. This hasn’t changed, if anything, I need it now more than ever!


(Photos of a bad flare,involving both arms!)

To make matters worse, I sent in my first application for disability. I WAS DENIED! BEFORE THEY RECEIVED ANY OF MY MEDICAL RECORDS!
I was expecting my first time to be denied (apparently most CRPS fighters do). That’s why I knew ahead of time that I’d most likely need to appeal it,and have them review my case again (by then, they usually approve those with CRPS/RSD).
BUT! I’m already having to appeal the decision, before they even know what they were denying! So I have to go through the whole process again, just to get denied again (like I would have,if they had everything to base their decision on in the first place). It could easily be up to a year before I start to see disability benefits. 😦

Why is this stressing me out?
– Because I turn 26 on November 14th of this year… Meaning, I am getting kicked off of my mothers health insurance (which I’m so grateful that I’ve been able to stay on).

Why can’t I just pay for my own insurance?
– I broke my foot on March 22, 2012. I haven’t had a pay check come to me in over 16 months.
Between my medical bills, living expenses, student loans, car insurance,and other bills….. I have wiped out my parents financially, which I feel extremely bad about.

**Although money is not something I have right now, my main stressor is the fact that I won’t have health insurance in 4 months.**

So… That’s pretty much the scoop.
Finding Arthritis in my lower back, Bone Marrow edema in my right foot, the doctors only giving me 2 options left (both of which, are way to dangerous for me to even think about saying yes!), and Getting denied for disability(as in not having health insurance after November) …

Regardless of all this crappy news, I must try to think positive. Or else I’m allowing the CRPS win… And that’s just not expectable. I’m way to stubborn for that! 🙂

My goal? **HBOT**
Although I’m back at square 1 with donations ( the Alpha Stim used most of it)
I’m hoping to be able to raise the funds, so I can get HBOT treatments… So I can get my life back.
*I’ve started making TuTu’s for infants and toddlers (website coming very soon!) but a post about it will be up tomorrow!*
All profits made will be going towards my treatment.

If you’d like to help me reach my goal to receive HBOT treatments please go to
http://www.gofundme.com/LRTR2013 🙂

Thank you so much for reading this lonnnggggg update. It’s means a lot. Please share!

Love,
Heather Lynn

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