Friday, October 18, 2013

Weekend Update!

Good afternoon! How is everyone?

It’s Friday the 18th of October and I am exhausted! My new medication has been making me really tired, and it hasn’t been helping the pain levels at all. Pain is probably an 8 today. I’ve been sleeping downstairs for the past few days because the stairs have just not been possible. Otherwise I’m alright! I haven’t been moving around that great, but I’m hoping I feel a little better tomorrow so I can have fun with my dad this weekend.

I don’t have much to report today! There is a lovely girl named Ashley trying to raise enough money to pay off medical bills and get to the Cleveland Clinic! If you can help at all please go to this link: http://www.gofundme.com/4bj150. Remember that every little bit helps!

Sending you all lots of love and hugs. Hope you have a good weekend!

New email address:  rsdsah@gmail.com

Tuesday, October 8, 2013

Happy Tuesday!



Good Morning!

It’s Tuesday; October 8th and the weather is awful! Before RSD rainy and cold days were my favorite, but now there the most difficult. Pain levels are high. I had a busy weekend, so I’m now attempting to recover from that. Otherwise, I’m doing alright. I’ve got some fun stuff to do tomorrow so that is what is getting me through today. 


I’ve been having really bad migraines the past few months. Has anyone experienced this? We’ve been wondering if it’s connected to RSD somehow. Over the weekend we got a paper that needed to be signed to give permission for the SSD people to get all of my medical/school/work records. I’m not sure when that will actually be happening though because of the government shutdown. I’ve been really worried about that lately. 


I hope to have the RSD YouTube page up today, or tomorrow. I’ll keep you updated on that :) Question Tuesday has been posted on Facebook go to this link to answer: www.facebook.com/RSDSupportandHope/posts/623742154344208


Sending you lots of love & comfort. 


New email address:  rsdsah@gmail.com



Friday, October 4, 2013

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

Tuesday, October 1, 2013

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

Monday, December 17, 2012

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 :)