Tuesday, January 7, 2014

Baclofen Pump Trial


Trial didn't go as planned.  

Started out as a 4 on the ashworth scale, tone wise, then ended and didn't even drop below 4 at any point. The nurse was able to get my knee from hyperextended to locked in neutral when I was sleepy and before my nap; sometimes this happens and 'loosens' at night right before bed. So it didn't work or kick in for any of the 6 hours at 25 micrograms.. I get manipulated into past neutral and bent degrees during physical therapy.. Did nothing for my ankle, hips, or torso either. Going back most likely next Tuesday to try again and get 75 micrograms put in and also try carbocaine, which is a trial for a nerve block, in conjunction with the Baclofen pump trial again. The carbocaine should block the nerves to my calf muscles and toe flexors to relax them.. hopefully my ankle too. The Baclofen pump will hopefully bend my other affected areas. All I know is that it failed today, my sore back switched to extreme back pain and now it's bearable after icing it. One more thing. With another trial, I am now set back 2 additional weeks for my program on top of the existing 2 week setback from taking an antibiotic. Going to have to be on it for an additional month. I'm tired of it and the crazy diet. I want to eat. I am not happy. On the plus side, the Drake Center doesn't give up on people. I'm hoping there will be something where I can bend my knee again. It's nuts.

This isn't all that happened/things we were told but it's most of it, and all I want to share. 

                      
                    

Thumbs down. No beuno. At least I have sweet people as blessings.


Thursday, January 2, 2014

New Years Off To A Great Start!


Before it was even the New Year, on the 30th, Scott Osterfeld *tanget* (who works with the Butler County Board of Developmental Disabilities and we met along with his parter in awareness to schools all over the area about sharing what disability is like and in attempt to help young ones see the disabled through a new light. Her name is Jessi, she has Cerebral Palsy and this chick can't be underestimated! They both are the sweetest and do many things for the board, together and have great qualities and talents of their own). But anyway, he found the perfect 'buddy' for me.. what they call it. Her name is Kate, she is 26, from Newport, Rhode Island? (I'm horrible at remembering now), went to UK for college where she met her fiance, has a job in marketing and she happens to have Celiac Disease, so we will be able to benefit from each other's recipes! [Gluten] The point of matching me (and others in this government funded group) up with a buddy is to fit each individual up with a friend that would be a good match to get together with, do things with, and they can take you around places and spend time with you, since you are well.. disabled.

Scott, Kate, and my coordinator, Mike, all came over on the 30th so that they could introduce me to Kate and we could learn about each other and share contact information and get ideas going about what we'd like to do when we hang out. Because I said I'm so broke now, so many things I would want to do, I can't. She brought up a pottery place and I instantly lit up. I used to paint pottery all the time at Kiln' Time right by my house until it turned into several other businesses and is now the adorable little Book Bums, where I personally know the owners! I'm a creative girl, I come from an art family, and I love to paint so that is definitely on our schedule. So is watching movies at home.

Scott and I were also talking about different things we could do for the board to outreach to businesses about the Butler County Board of Developmental Disabilities, such as bring them cupcakes before their meetings to get them intrigued about us. He asked me if I'd be able to make cupcakes, and once again I lit up thinking I am the queen of cupcake making! I haven't for such a long time because it's too hard to stand for a long time, and the decorating part I am a perfectionist about, and each part completely wipes me out. But for this? You bet. So I will be back to making cupcakes this year and experimenting to make the best tasting ones and gluten free cupcakes! I told them I wanted to open up a bakery/boutique and it officially settled in that day that I was going to do it. I was at least going to open up my own bakery. The difference with my future small business? A fourth to half of what is earned goes to either the Dystonia Medical Research Foundation or I'll make a fund for my Stiff Person Syndrome. Cupcakes and pastries that give back! Giving back while buying products seems to be a trend these days. Can't say I have heard of a bakery/boutique or a bakery doing this, so I'll take a whack at it. This is where I'd incorporate Kayla's Cause. The scarves for sell and other hand made accessories and jewelry later will have a new home! Not at the Dance Bag anymore :)

Scott had came back from donating plasma that day, and asked afterwards if they had a non-profit organization he could give the money to. The person told him nobody's ever asked them that. Having my experience with IVIg treatment, needing a bunch of healthy plasma from donors, we talked about setting up something called The Plastastic Four--giving plasma for non-profit! It could easily be a philanthropy for colleges and a competition between sororities/fraternities to see who can give and raise the most.

The day before or so, Jessi had messaged a bunch of people on Facebook that she was helping to sell teddy bears for $5 for disabled children and the money goes to the Special Olympics. Pro soccer player for the Cincinnati Saints, Eddie Hertenberg, has experience with his non-profit organizations, 2 Touch Lines and Eddie's Teddies! It's explained in this link :)

There's Eddie!
And catch Scott and Jessi dancing for a Saints goal at 5:28 haha! <3

My mom got a call this morning from Mike saying that Eddie wants to give me a $200 prepaid credit card, 4 tickets to a game, and he and several other players want to come by my house on Saturday to meet me!!! How many is "several", I don't know but whoa where did this come from! How generous and exciting!!! I instantly thought of one person and found it so weird that soccer came back into my life two ways recently.

I've been talking to this gentleman named Zach. He saw me on the dating site Plenty of Fish and messaged me on Facebook. What he had to say was so nice, so I was just being nice back but not interested. Talking more, he told me he had gone through cancer and that he's taking a treatment now so that it doesn't come back. He almost went pro in soccer until the cancer got in the way with that and ruined things. He was being scouted by the Chicago Fire team. It really hurt for him, and we both could relate to losing something we love because of an illness. Soccer and dance. He's now acting up at Columbus State University and he's excellent from a peek of a show he sent me. It's his new thing that he has taken up and is fond of now, after losing soccer. His endurance isn't the same, so that's what made him have to switch routes. We met up last week and from everything he does and says, he has a absolute heart of gold and treats me like I'm the most amazing human being. Aside from being alike in so many ways, I never ask or dream to be treated like a princess by a guy, as I am low maintenance, but he would do anything for me and is already planning on doing things for me like after Baclofen pump trial, after my surgery and when I get off my diet. Is it possible not to say no to that? It's the first time someone's heart has won me over and makes me see past the fact that they aren't my type. Never thought that would happen. So... I have a present for you now, Zach....

Come down and meet pro soccer players on Saturday with me and join me to their game whenever it is, along with Jessi and Kate? This is for you this time and your soccer passion :)

THIS JUST IN: 




Couldn't have worded that better myself ;)