Friday Update!

Hello, my loves!

Happy Friday; I hope you’re all having an okay day. The pain levels are high for me today, but I’m getting through it.  The past few days I’ve been trying Topamax and it really didn’t work well for me. The side effects were making me feel awful, and I’ve had some scary ones as well. I think we’ll be stopping that one. The next thing I’ll be trying is Cymbalta. I’ve tried it before so I know that the side effects aren’t that bad so I’m not nearly as nervous to start that one. I’m also on Ativan for sleep and I’m hoping that starts to work better soon. 

It’s a very hockey weekend for me! The Flyers are playing on Saturday and Sunday so that is how I plan on spending my weekend. I hope I start to feel a bit better so I can get out a little bit. I’m also going to start working on the RSDSAH YouTube page this weekend! I’m so excited, and if you have any ideas for playlists that you want to see please let me know! So far I’m hoping to add some RSD information videos, music that helps me through the day, funny videos to make you laugh and things like that.

I hope you all have a fantastic weekend. Talk to you Monday :) xo

New email address:  rsdsah@gmail.com

Facebook: https://www.facebook.com/RSDSupportandHope

Twitter: https://twitter.com/RSDSAH

Website: http://www.rsdsupportandhope.org/

One of many :)

Hello there!

It’s been a while, I’m so sorry for the lack of blog posts. I have a lot more free time on my hands and an actual schedule for my posts has been made now, so hopefully you’ll start reading a lot more about my boring life soon. This morning I had my first phone interview with social security in hopes to get disability benefits. It went well, and we’re optimistic about the outcome. It’s still going to be a stressful few months while we try to get all of that worked out.  

My health hasn’t been the greatest recently. In July I was hospitalized with a herniated disk and ended up having a cyst as well. I stayed in the hospital for 3 days trying to get the pain under control, and then the next week I had surgery. Surgery and RSD aren’t the best mix. The nurses had to put an IV in my left hand, but it almost instantly swelled up. I was in so much pain that they had to take it out and put it in my right arm; which was still painful, but not nearly as bad as before. Stairs became impossible, because I couldn’t handle the pain from the surgery and my normal RSD pain at the same time. I lived on the first floor in our family room for about a month. 

My mom had off from work today so she took me to Linvilla Orchards as an attempt to cheer me up and get me out of the house. September through April are the most difficult times for me though, so I only lasted about 20 minutes before I was completely exhausted and we gave up completely after about 40 minutes. We have a special trip to Disney World planned in December and I’m really worried about how that is going to work out. I may be scooter bound the whole time; which would be interesting! :P  Now I’m stuck on the couch for the rest of the night trying to get some rest. 

Today I am going to be starting Topamax to help with my migraines. I have been reluctant to start it, because the side effects terrify me. I’ve also been taking Ativan to try to help me sleep. It’s better than nothing, but it’s still not helping much. I only get a few hours of sleep a night and that is starting to wear me down a lot. If anyone has any suggestions on good sleeping meds that work, I am all ears! 

The pain levels are high today so after I’m done typing this (I am so sorry about how long it took. I’ve been working on this in shifts all day trying not to overwork my hands) I’m going to try to get some more sleep. I wanted to let you guys know that there are going to be some new RSD Support and Hope posts! On Monday, Wednesday and Thursday I’m going to post a new blog. I can’t promise they are going to be the most interesting posts but I’m going to try! On Tuesday I’m going to post an RSD related question on our facebook/twitter for you guys to answer. On Thursday I’m going to post a fun question that will hopefully allow me to get to know you all better :) Within the next few weeks we’re going to be making a RSDSAH youtube page. It will have different playlists and we were thinking about making a spotlight type thing? Anyone that wants to be involved can send us a few minute video describing what they go through and how they cope and share whatever they want about themselves. We’ll also be posting any new projects that we’re involved in.

If you’re still reading this after all that than thank you! You are fantastic. I love you all lots and I hope you’re having a good day.

New email address:  rsdsah@gmail.com

Facebook: https://www.facebook.com/RSDSupportandHope

Twitter: https://twitter.com/RSDSAH

Website: http://www.rsdsupportandhope.org/

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 :)