Plushies and such

So here is another project I've been working on. I absolutely love the game angry birds and I wanted a plushie of them but they are like $25 a piece so I decided to make my own. I actually made this one a while back but now I am working on the pig from angry birds and the other birds. I used Obsessively Stitching's tutorial and it was so easy to follow. And personally I think mine turned out really well:) Even though my picture quality is pretty bad and I think I made the feather on the top of his head backwards. :/

So that was about the plushies, now the such. I am doing very badly. My ankle is being such a pain and my RSD is worse, I can't put any weight on my ankle because it hurts too much so I am using crutches or staying sitting. Calmare isn't really working anymore and I don't know what to do. We are looking into ketamine but it really scares me because it is so risky. Please pray for me to feel better and be able to walk properly in time for my graduation ceremony on the 17th of June. I really want to be able to walk under my own power. I am going to sew a skirt for my graduation and I really hope it turns out good. I will post pictures when I am finished.
With lots of love,
Taylor

Highs and Lows

So I guess I'll do the lows first. My pain has been extremely bad and it doesn't seem like the new treatments I am trying are going to help my pain, it has helped my other symptoms of RSD like digestion but my pain is still at an 8 - 10 all day everyday. I am going to continue with the NRC treatments to see if it will start helping but I'm not very optimistic. I am having a lot harder time walking too, my knee just freezes up and burns insanely whenever I try to put weight on it so I've been using crutches at home and when I have to go out somewhere I walk as little as possible and sit whenever I can. Because of this I am looking into getting a service dog to help me. Ok, now on to the highs. So I've really been working hard on getting my school work done and I am happy to day that I am ready to graduate. I finished my last class and have signed the papers so I am officially a graduate:) It's a year early but I am so glad I am done. School work = stress and stress = more pain. I have also been sewing a lot and made a lot of things. Here's pictures of some things and I will post again soon with more.

This is me and a dress I made at a church event Dress a Girl Around the World. We made them out of pillowcases and t-shirts. This one is a pillowcase and bias tape made into a sundress. This was such an awesome experience, I made 2 dresses in 3 hours and I sat by the most lovely people. The women next to me, Linda, taught me how to use both elastic and bias tape, which I had never used before. She was so awesome:) The dresses we made are going to girls in Uganda with our pastor's wife and their son.

 These are of a puppy plushie that I made for my teacher. I gave it to her on my last day and she really liked it. She helped me so much this year when I couldn't make it in because of my pain and she is just such an awesome women overall. It was also exciting because I used new safety eyes and a safety nose that is more detailed like a real dog nose that I got from my new favorite store Hobby Lobby:) The fabric is super soft as well and has little poofed up bubbles. I had so much fun making it:)

Me with the puppy plushie:)

 This is a cactus in a parking lot that I was in. I love cactus, they are so beautiful, and I just had to snag a pic. Below is a close up of one of the flowers.

With lots of love and pain free hugs,
Taylor<3

The Neurologic Relief Center- New Treatment

On Monday I went to a new Dr. and actually had a good experience for once:) I went to see Dr. Rob DeMartino who is a chiropractor and a head trainer for The Neurologic Relief Center which is nation wide. He is an amazing dr who really cares and is super nice. I've been in twice and had testing done and have already had some results/relief:) I am so excited!:D The experience is so strange, because so many different things happen in your body, which is good because changes means it is working. I was having extra tingling, weird hot and cold feelings and as though my right leg, my rsd leg, was floating. The treatments have to deal with meningeal decompression and some other things that sort of confuse me but I think it's working. I will update more later when I have more treatments done. Please keep me in your prayers as I begin this adventure.
Here is a picture of the flowchart the dr made me explaining everything, If anyone has questions I will be happy to answer them:)

With lots of love,
Taylor

Idiotic doctors:/

So yesterday I went to a rare disease dr and it was an absolute disaster. We, my family and I, were so excited to hear about this man who apparently is educated on RSD, has a passion for rare diseases, and works with kids but he ended up being a jerkface to the max. He was rude, didn't listen, and didn't care that my allodynia was really bad and even though i asked him to touch my foot as little as possible when he did the examination he just starts grabbing and squeezing! Plus, he blamed it on me that I didn't have my plantar fascia treated properly in the beginning and that is why I have RSD! It is NOT my fault the 15 other numskull drs I saw in the beginning couldn't diagnose me with something as simple as plantar fascia. I'm not a dr, I went to the drs who are supposed to help you and they didn't, don't try and blame it on me. uhg! I can see now too that he is a complete fake, the patient before me, a little girl, when she left the dr gave her a kiss on the cheek and was super sweet, but when he came to me, noooo, he has to be a completely mean jerkface. and I found out afterward too that he misdiagnosed a girl with leukemia. She went through radiation and everything before he realized, oh wait, you don't have it. Her body was damaged from the radiation. Such an idiot. Sorry for the rant but I'm just so mad that there is no one who knows about RSD let alone has ever even heard about it and the one person I find doesn't even care. Please never ever ever go to a DR. Bernstein who does a cure for kids. You will be worse off for it.:( Now I need to put it behind me and pray for the man because he obviously needs some serious help and it is his ignorance that he doesn't want to help me or to learn about my disease.

On a happy note, I am getting really close to being done with school. I can't wait to be done with it because it is so hard to focus on when I am in so much pain. And when I am done with it I can focus on my sewing which I really enjoy and helps me keep my mind off the pain. Plus I can start earning money through selling things to try and get the embroidery machine that I want so much:)
My pain has been really bad lately at a 6-8 level, mostly 8, and the burning is worse. I can hardly go anywhere because the vibrations from the car and road are just unbearably painful. Plus it has been windy and the wind blowing on my leg is painful. sigh..... I really hope things get better soon.
With lots of love,
Taylor

Stupid leg :(

So life has been pretty hard lately. I've pretty much been bed ridden because I can no longer bear weight on my right leg( my RSD leg) without being in tremendous excruciating pain in my knee and shin. I'm using crutches to get around the house and I really hate them. We are probably going to go get a wheelchair from a friend until I get better, at least enough to walk. This is hard for me because I've never been this bad to where I would have to use a wheelchair, it seriously sucks. I have an appointment with a neurologist today but I don't know how much good it will do. I hope you all are doing better than me.
With lots of love,
Taylor

"Pain pain go away, don't ever come back another day"- Quote by me

Flare and a Robot

I haven't update in like forever and it is because I have been in a really bad flare. I am having a really hard time doing anything and now my pain has spread all the way up my right side and into my chest. The pain is so bad it feels like when I look at my leg it should have knifes sticking out of it, cuts all over it, and its engulfed in flames. I haven't been sewing as much as I would like to either because I am trying to work on my school stuff . I only have one more class to complete to graduate but it's government and the pain makes it hard to focus. I did however make a robot plushie before I got  really bad. It took me a total of 14 hours to make because I made my own pattern from a drawing of mine and there are so many pieces to it, 43 to be exact. I will be selling them for $45 I think and even though they are part of my Hug Mes for RSD kids I won't be giving them away for free yet because of the time and money it takes to create them. I am extremely proud of this little fellah and would love to make him in other colors when I have the time again. Here are some pictures:)

 

The last one is for measuring purposes so you can see how big he really is:)

With lots of love,

Taylor

Quick Update

I am in Saint George again having more Calmare treatments done. I am praying that I start felling better soon. Last week I finished some Hug Me Pillows, here are some pictures.

This is the front of one I haven't finished completely yet.

The last two are for a friend with RSD and her little sister. I hope to eventually be able to customize each face to look like the person who orders them.
With lots of love,
Taylor

In the nightmarish land of a flare

For this last week I have been in an extreme flair. I spent last Friday and then this Monday and Tuesday in Saint George getting Calmare treatments done but for the first time it really hasn't helped. I can barely focus on anything and it was so excruciating to ride in the car on the way there and the way home . The roads are very bumpy and the vibrations were killing. I am also getting behind in school because I'm in too much pain to focus on it. I have managed to create another Hug Me Pillow though because it's one of the only things that keeps my mind off the pain.

 

This  is the front and back of it.

I apologize if this ended up being a pitty party post.

With lots of love and a hope for a pain free tomorrow,

Taylor

Hug Me Pillows Part 2 and update

The last two weeks have been very up and down in relation to my pain. I did experience some good days around the middle of last week which was really awesome because I was able to get some school work done and finish a subject. School work is one of the hardest things for me to focus on because of my pain and my pain is the reason I now have to do school from home. It's not so bad though, I can graduate a year early now:)

I've also been working on my Hug Me Pillows. I've gotten lots of orders which is fabulous:) I'm working through them slowly. My work goes slower because I only have a simple sewing machine that does not do embroidery letters so I have to either hand stitch the words "Hug Me" or use a super tiny zigzag stitch and form the letters the best I can. I've looked into getting an embroidery machine but would have to sell about 60 or more pillows to be able to buy one. I've come up with two new designs for them. A heart and one with a mustache. I was going to make every pillow have a smile but I just really loved the idea of a mustache. The mustache itself makes me laugh so I think it still counts:)
With lots of love,
Taylor

P.S. I don't know what happened to the color when I took the picture but with the one with the mustache the face is a deep red orange and the heart is red.

"I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me"

                 - Song "Savior, Please"

Hug Me Pillows

All of those who have RSD/CRPS know that there really is no relief to our daily excruciating pain. The only way I know how to live with my pain is to do things to keep my mind off of it. One of these things is sewing. I really enjoy it and love being able to create things. I decided that I want to share this with others who have RSD/CRPS. This is where I came up with Hug Me Pillows. They are 16 inch round pillows that are of my own design completely. Each one has a smile and a heart that says hug me. I have only made one so far but I have many ideas for more. I will post pictures of the pillow at the end. I chose these pillows, and the Hug Me, because at least for me when I'm in extreme pain sometimes you just need to hug/squeeze something. I actually went around Joann's craft store hugging pillows to see which one was the best for the purpose:) I chose the 16inch pillow but made my own because it didn't seem to have enough stuffing to squeeze. For all kids, and adults, with RSD/CRPS I will make one of these for them for free. I am currently doing this as a non-profit because I feel that I really need too. Because of that I am limited in what I can make and how many I can make and mail for free. If you want one and you do not have RSD/CRPS then I am selling them for $15. I would also accept donations from anyone who would like to help me out in giving these to people who are going through something as horrible as this disease and who just might need a smile. If you are interested or know someone who would like one please let me know. I would be happy to make them one. I can do them in lots of different colors. Currently I am working on one with three smiles, and one that looks like a ninja:)
With love,
Taylor

.

-"After the rain
You can look to the sky again
The clouds will give way
To the light of the sun
After the rain
You know that you've made it through
And you'll finally see the joy from the pain
After the rain"
        -song After the Rain

Others and Calmare Therapy - Update

The video from the previous post explains Calmare Therapy in general and shows Dr. D'Amato who is using the treatment on the East Coast.
Here is a video of my doctor in Saint George, Utah on the Calmare Therapy and someone he has treated. It's pretty cool and interesting.
Teen hit by lightning trying out new device to deal with pain - ksl.com

Recently I have had some severe pain days. Nothing less than a five and usually an eight or nine. It's been a bad week and not the happy and pain free Christmas I was hoping for. I've scheduled to go back to Saint George and have some more Calmare treatments done this Friday. I've come to realize that I will probably have to have at least one of these treatments a week for a while, or possibly the rest of my life, to keep my pain down to a manageable number. I was joking with my mom yesterday that I should just buy one of the machines and pull it along behind me:) I almost wish I could do this.

I was listening to a local Christian radio station and they were talking about new years resolutions the other day. I thought to myself what I would want to have as my resolution. The only thing that came to mind was to be healthier and be in no pain. I can't exactly control that so I am at a loss to what mine will be. Nonetheless I will be praying for a happy and pain free new year for everyone with CRPS including myself.



-"Would you dare would you dare to believe
That you still have a reason to sing
Cause the pain that you've been feeling
It can't compare to the joy that's coming
So hold on you gotta wait for the light
Press on and just fight the good fight
Cause the pain that you've been feeling
It's just the dark before the morning"
                     -Josh Wilson - Before the Morning

Calmare Therapy Treatment Demonstration and Introductory Video

Christmas Highs and Lows

I know I haven't posted in a while but I decided to see how I was doing a while after my last Calmare Pain Therapy Treatment. I am doing fairly well. I am still having daily pain and occasional flairs though. I am excited to say that my pain has at least gone from a daily level of 8-9 to a 5-6. I'll take anything I can get:) I've come to realize that even though this treatment, and possibly others in the future, can help me I will always have this disease and most likely always have the pain. Which sucks but in some way I feel that it has made me stronger. I am hoping to go back and get a few more treatments in the hope that I will get even better. The more treatments, the more time your brain has to be re-taught that you are not in pain. My doctor that performed the treatments says sometimes it can take up to two weeks to have the treatment take full effect. Your brain can take a while to make the changes. On another subject, I am very excited for the rest of this holiday season:) The only issue with this is that it is freezing, and raining at the moment, and cold makes my pain worse. Stupid cold. I'm having a problem with this because my RSD is in my foot and leg and this prevents me from wearing pants and socks so my toes are almost always ice cold. I mostly go around the house either wearing shorts short enough to not make my leg worse, or wide legged pajama pants so I can roll up the one side to shorts length and not make my left leg suffer. I find this immensely frustrating. Well, I hope that everyone has a Merry Christmas and a Happy New Year. And may your pain be as little as possible.


-"Heal me, O lord, and I shall be healed;
Save me, and I shall me saved,
For you are my praise"
                -Jeremiah 17:14

                                                                                                            

"Dum spiro, spero"

Today has given me new hope. I had my tenth Calmare Treatment by Dr. Chalmers. I went in at a pain level of 4, which is pretty low for me to begin with, and went out at a 1 in most places and 2 in my worst ones. So far, four hours later, it has stayed at the low level, which is uber super exciting: ) I am continuing my treatments for the rest of this week in the hope that the low pain/pain free time will last longer. I am praying that it will do just that. I am also praying for some friends who are trying out the therapy on the east coast.  The title of this post is "Dum spiro, spero", it means "While I breath, I hope" I love that quote. This treatment has given me so much hope for a life without pain. I am so thankful for it and my doctor who is amazing. Here is a close-up picture of the electrode on my foot for those who are curious of what it looks like or are considering having the treatment. If anyone has a question about it please feel free to ask me. :)

"I have unanswered prayers
I have trouble I wish wasn't there,
And I have asked a thousand ways,
That you would take my pain away,
You would take my pain away"

       - Song "Your Hands" by JJ Heller

Flare:(

I am currently experiencing a flare. So much for the no pain time lasting. Everything from my toes to my mid thigh and my hip are burning with sharp stabbing and throbbing pain. My muscles are spazzing out. My pain right now is at a seven. This really sucks. I have another Calmare Treatment in a few hours. I am praying that it makes my pain go away.

Revelation 21:4- "He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

Following my 7th Calmare Treatment

Here's a little update. It has been four and a half hours since my latest Calmare Treatment and I am still not experiencing any pain. This is amazing. I am praying that this continues to last. It is the longest it has so far. End update.

-"Pain is inevitable. Suffering is optional."- Anonymous

Pain Free!

At this moment in time, after my 7th treatment, I am pain free. This is amazing! A miracle! I thank God for this blessing: ) Please, if you have CRPS, or any kind of chronic pain, try this treatment. It's utterly fabulous: D

Calmare Therapy

This morning I had my 6th Calmare pain treatment. I am very happy with the results. Yesterday after my treatment I had about ten pain free minutes. It was so awesome :D I still have six treatments remaining and possibly more if I need it. I am very glad that I've found a non- evasive way to relieve my pain. I honestly didn't think there was any possible way to get rid of my pain, even temporarily, and I am glad I was wrong. I'll try and post tomorrow after my next treatment. For now here are some pictures from my last treatment. The first is of the machine that is used and the second is of my foot with all the electrodes one it. I love this machine:)

Hello and Welcome

I am 17 years old and have had the nerve/pain disease CRPS/RSD  for two years. The main reason I have created this blog is to educate people about CRPS and tell about my journey working through it. I am trying to live my life to the fullest even though I have this disease I enjoy anything artsy especially drawing, photography, and sewing. I collect cactus, buttons, and colorful socks. I would love to meet you and hear your story. Please feel free to comment.