Update time!

Wow, I haven’t posted a blog since July? I am so sorry about that! I never knew how hard it is to maintain a blog. How have you guys been since then? Hope everyone is doing well! As you guys know I was doing well after my Calmare treatments, but I’m sad to say that the pain has been back.  It was a blissful 8 months, and that was more than I could have asked for. We have more treatments set up for February, so I’m toughing it out until then!

RSD Support and Hope had been on an extended break from our weekly meetings, but I am so happy to say that they’ll be starting up again soon. We have a new member on our team! His name is Dan, and he is my big brother. This organization has turned into a completely family based organization. Danny was the last one that wasn’t involved, and now we’ve trapped him too! I am also so happy to announce that we have received our first really big donation! American Muscle has given us a very generous donation, and we are so looking forward to putting it to good use. We would like to thank them once more.

We hope to plan another fundraiser sooner rather than later. More details on that as I get them. Today I updated the website! I’m usually not great at web design, but I have to say that I think I did pretty well (you can feel free to lie to me if I haven’t). You can check that out and tell me how I did here: http://www.rsdsupportandhope.org/

Just a reminder that I have an email address so you guys can talk to me whenever you want! Send me something at: kait@rsdsupportandhope.org. I love hearing from you guys! You can also say hi to me on facebook: www.facebook.com/RSDSupportandHope and twitter: https://twitter.com/#!/RSDSAH.

That’s all for now! Sending lots and lots and lots of love! I hope you’re all doing well!

                                                Kait :)

Treatment Options!

            Hi everyone! Long time no talk! I’ve been super busy lately, but I’m finally getting a chance to update! Recently I’ve been asked a lot about treatment options. It makes me so sad to see people losing hope. Don’t ever lose hope! One day there will be an easy cure for all of us, but for now here are a few options that I know of! :)

                
       The one that I seriously recommend is Calmare Scrambler Therapy. So far there are only eight treatment centers, but the travel is well worth it. I got my treatment in Rutherford, NJ with Dr. Michael Cooney. Dr. Cooney, and everyone that works in his office is extremely caring. The treatment is pain-free, and it works! You can check out his website here: http://calmaretherapynj.com/ You can find other locations here: http://www.calmarett.com/locations.html And lastly check out my dad’s testimonial here: http://youtu.be/bijXl243VGs :) I finished my last treatment in February, and I’m doing well! I still have some tough days, but they’re very limited. I feel so much better than I did.

               I know that whenever you first get diagnosed they almost always recommend some kind of intense physical therapy program. This kind of program didn’t work for me, but it does for some people! If you’re interested in trying this kind of program, check out your local hospital, or ask your neurologist about your options! :)
              
               Another option is nerve blocks! I’ve never tried this, but one of our facebook friends, named Jami, has tried many and this is what she has to say about it: “I didn't usually get relief right away, but they did help sometimes. Everyone reacts to them differently and they help some people and not others. If you are experiencing any improvement after the first one, then it's at least a good sign. Also, definitely follow the doctors instructions for after the procedure. I learned that lesson the hard way. Hope you're feeling better.” Thank you so much, Jami! That information was extremely helpful. Again, if you want to try this option talk to your neurologist! :)

               I hope this blog has helped you in some way! If there’s anything else you want to know feel free to leave it in the comments, or contact us on facebook and twitter.

               More Links:
              
https://twitter.com/#!/RSDSAH - Twitter
http://www.facebook.com/RSDSupportandHope - Facebook
http://www.rsdsupportandhope.org/ - Website

               Love you guys! – Kait :)

Second Week of Treatments!

Hello there everyone! I hope you’ve had a wonderful week so far. On Friday I finished my last Calmare Scrambler Therapy Treatment. I had ten treatments as that is the recommended amount to achieve the best results and it worked! The treatments are drug free and pain free. The only side affect during treatments is extreme exhaustion, but now I’m finished and already getting my energy levels back. I'm very happy with the results! I’ve been pain free for 6 days now! I haven't been pain free in over three years so this is life altering for myself and family. It’s a start, and I’m hoping it is going to last a while. Positive thinking right? Calmare Treatments are a miracle and I strongly encourage everyone to look into them. I went to the office in Rutherford, NJ but there are a few other places in the East Coast, seven locations in the United States. I had the chance to get to know a lot of wonderful people during my time there. Kathy, who is the Doctor’s assistant, is one of the sweetest people you will ever meet. She is so perky and trust me she will completely brighten up your day when you walk in the office. Barbara, also a Doctor’s assistant, is equally as sweet. She completely welcomes you with open arms. On the first week of treatments I got to work with Dr.Cooney. Dr.Cooney was very nice and he was always very entertaining. He was always making sure I was comfortable and asking if I needed anything. He is a very smart man and was able to pin point exactly the right places we needed to put the electrodes to take the pain away. On the second week I got to work with Dr. Michel. He was very caring and also very smart. He was very attentive and was always making sure that the electrodes were comfortable. All of these people are so wonderful but there is one thing that I love the most about all of them. They have incredible knowledge about RSD and other types of chronic pain and they care about helping us. With so many people in the world not taking the time out to just learn about it, it was so amazing to be in a room full of people who really understood and wanted to help. I will never forget any of the people I met and I will always be grateful for the wonderful thing they did for me. If you would like to get more information on the Calmare Treatments please check out their website or feel free to ask me any of the questions you would like! I will post the link to their website below. Have a great pain free week everyone! Keep fighting!

-Kait :)

http://calmaretherapynj.com/

http://www.rsdsupportandhope.org/

First Week Of Treatments!

On the first day I had a million different thoughts and emotions running through my mind. I was nervous, scared, excited and just really happy to start. When I got there I met Kathy (who works at the front desk) and she was one of the nicest people I’ve ever met! She was so happy that I was starting and that the first appointment went so well. They got me right into the room and made sure I was comfortable. We got started right away; Dr. Cooney was very kind and made sure that none of the electrodes were bothering me. When he turned the machine on I was out of pain immediately.  It was the best I’ve felt in a really long time. The treatments are 45 minutes of pure bliss. The only side effect of the treatment is excessive tiredness, but I had trouble sleeping so the tiredness was welcome. On the second day I felt a little apprehensive that we came at a bad time. My pain levels weren’t that high so I was scared that my levels will get to zero and last a few days, but then I would get a flare up and it would come back. Dr. Cooney was very good at reassuring me. The rest of the day went as planned. While on the machine my pain level was at zero and when I was taken off the machine it went up to about a one. The pain relief from treatments both of those days lasted about 4-5 hours. When I got to day three I got nervous about the sleeping, the night before it took me a while to fall asleep even though I was exhausted. The Doctor said not to get worried about it because the sleep will come. I’m supposed to sleep as much as I can and whenever I want to. Day 4 went perfectly; there was not a single problem. I was happy that the treatment was working so well! Day 5 also went really great. My dad and I we’re both really excited to get a break from all of the driving. Through the weekend the pain stayed away for a really long time. The pain didn’t come back to 1 until the next day and didn’t rise back to a 3 until Sunday. So far everything has been wonderful! I have 5 more treatments to go! I hope you all have a great week and I’ll write another update on my last treatment on Friday! –Kait :)

Calmare Pain Therapy Treatment

Well, hi there guys! I hope your all having a wonderful day! Thursday (February 9^th) I have a doctor’s appointment with Dr.Michael J. Cooney in Rutherford, NJ! I’m trying a new treatment called the Calmare Pain Therapy Treatment. Here is an overview of the treatment from the website:

“Calmare Pain Therapy Treatment is a non-invasive, non-pharmaceutical solution for pain control and drug resistant pain. It uses biophysical “scrambler” technology, a type of treatment for nerve pain that uses electrodes placed on the skin. Very low doses of electricity are transmitted from the electrodes through the skin to block the pain. Pain may be a result of chronic conditions including injury, cancer and chemotherapy, diabetic pain, lower back pain, chronic neck pain, post surgical pain, failed back surgery syndrome, phantom limb syndrome, RSD, fibromyalgia, radiating pain and neuropathy.” 

I’m kind of nervous but I’m really excited to start! I’ve been reading some reviews and it sounds like it has a pretty good success rate. From what I understand you do 10 treatments, so I’m going to be doing a blog series following my experience! I hope you guys enjoy it! Have a great pain-free weekend everyone! Keep fighting!

-Kait

Treatments website: http://calmaretherapynj.com/

http://www.rsdsupportandhope.org/

https://twitter.com/#!/rsdsah

http://www.facebook.com/RSDSupportandHope

Hello everyone! I don’t know about you guys, but when I’m in pain music helps distract me a lot. One of my favorite bands is U2! A song that I really love is called “Miracle Drug”. If you have never heard it before I strongly urge you to listen to it. It’s not just the song or the music that really makes me love it; it’s the story behind the song. No one tell its better then Bono himself so here is a passage from the book U2 by U2!
 “The character of Christopher Noal was in the back of my head. He was a boy who came into Mount Temple just as we were leaving. He had been deprived of oxygen for two hours when he was born and developed cerebral palsy, so he was paraplegic. It’s written from his mother’s perspective. It’s about her faith in her son when for nine or ten year she had no idea if he was a conscious, sentient being or not. The hospital, the doctors and nurses, could not guarantee her that he was awake to the world. But she believed it. She saw something in his eyes that was the light of being. And she had enough faith in her instinct and in her love for him to teach him, to read to him, to talk to him, as if he was there. And then, aged eleven, this drug appears on the scene which frees up one muscle, which is the neck muscle, and allows him to move and inch. And through that movement he was able to type out all the stories and poems he had in his head for all those years.
He had a little unicorn device attached to his forehead and his first poem was called ‘I learn to Bow’, which is about this mechanism of the head movement but it’s also his poem of gratitude to go, who I think he felt had worked through science to free him up. Now, I don’t know about you, but if I had been locked in myself for ten years and I eventually got out, I’m not sure I’d be so full of praise for my Maker. Damburst of dreams, his first book, went on to win the Whitbread Literary award when he was fifteen years old. But the song is about his mother. I want a trip inside your head, spend a day there, see what you can see (Lyrics to the song). Generally rock stars don’t sing from an older woman’s perspective. It’s a song about faith, the faith that God can work through science, and in particular medicine. “
Isn’t that truly amazing?! It honestly gives me hope that miracles can happen. I think that if we just keep believing and keep fighting that one day we’re going to get our miracle drug. I hope you never give up faith, because if you keep fighting the most amazing things are going to happen. I know that right now it looks like there is not looking up from this, but one day there will be something that cures this horrible disease. Whenever you’re giving up think about the story of Christopher Noal and remember that miracles do happen. I would just like to remind you guys again that if you EVER need to talk to someone you can feel free to contact me through twitter, email, and Facebook! Love you guys! Keep fighting!

-Kait

Links:
http://www.facebook.com/RSDSupportandHope
https://twitter.com/#!/rsdsah
http://www.rsdsupportandhope.org/

Email:
kait@rsdsupportandhope.org

Hello Everyone! Long time no talk!

Hello Everyone! Long time no talk! I hope you have all had a fantastic couple of months. I’m sorry I haven’t posted in a while, but to make up for it we will be posting three new blogs this week. Recently the issue of mental illnesses developing from RSD has come to my attention. It is one of the saddest things I’ve ever had to witness. RSD/CRPS is in no way a psychological illness but psychological illnesses can be developed when doctors, loved ones, friends, and people around you tell you that what you feel is not real. RSD IS real! What your feeling is very real and I hope you do not let anyone tell you otherwise. Whenever you’re feeling like the world is walking out on you or that no one is ever going to believe you I want you to remember that someone out there does. If you need a friend, or someone to just listen to you feel free to email me! I don’t think anyone should go through this alone, and it would be my honor to talk to anyone of you! RSD patients go through some of the most difficult obstacles in life, but you can get through them no matter what it is. I love you all so much! Keep fighting <3