My Journal

May 19, 2009

Mom and I got to Boston a few days ago and its really nice here. I've been absolutely dead tired and I haven't even started the PPRC yet. The first night was hilarious at the ariport.... it was mom trying to wheel 3 HUGE suitcases, me with crutches in the wheelchair holding all the small bags pushing myself. There were lots of little hills so i went flying a lot of times :) We FINALLY figured out where Morgan and her mom were haha. They are the sweetest in the world!!! Morgan has the best attitude ever even though she's in so much pain. We got to our house, then went to dinner then went shopping, it was so tiring. I came home and went straight to sleep for 6 hours!!!!! The next day we got up rented a car and decided to try to get used to Waltham then drive to Boston and find the hospital. We ended up getting lost for about 4 hours, but saw lots of cool stuff in the process! We got home and decided to take a drive through the cemetery to get some nice pictures! We spent a few hours drivign and I walked around on crutches as much as I could there up and down hills! Yesterday we went to the Children's hospital in downtown for my evaluation and we made it there in one piece and it went well! I stood on my foot for aboout a minute, it hurt like crazy but it was really cool that I was able to stand on it while holding onto the physical therapist for dear life. I was told a have a bigger range of motion than a dancer which is really cool! Yesterday was really tiring, today we're gonna try to get with Morgan for a little bit to find stuff to do and see how she's doing. Off to find stuff to do to ware myself out!

May 15, 2009

Today was slammed! Turns out Bradley didn't have school so I got up at my crack of dawn, around 8 to watch him. Beth Nolan came over to help prepare for the trip. We went to the Nolan's for dinner and lots of people came to visit!!

May 14, 2009

Today I got up around 11, we went to get Bradley from school around 2:30. To pass time we went to Petsmart to look at the cute animals before our appointment with Dr. Sweetman. I wasn't feeling great but it wasn't horrible today, I'm starting to get used to it I guess. We went to visit Lois and Marty. Lois made us a ton of bracelets with Geri knowing we were very busy. It was really nice!! When we got home, I retired to my room to rest before dinner. After dinner, mom and I went to visit neighbors before we go. Everyone has been very kind to us in every way imaginable. We really appreciate it. When we got home it was nearly 8 so I went to rest some more. I talked to a few friends and learned how to video chat with one of the many RSD friends I have in Australia, we just got done talking after about an hour or so. I'm not feeling too good so I might try to go to sleep because I have to get up really early to help with Bradley. We'll be on our way to Boston in about a day!

May 13, 2009

I didn't get much sleep, mom woke me up at 8:30 to get up for a doctors appointment at the wound center. The nurses and doctor were very nice there. After that I came home to go straight back to sleep and slept for a few hours. When I woke up Bradley was there wanting me to swim again, so we decided they ulcers looked better yesterday after swimming so another day wouldn't hurt. I only stayed it for a little bit because we had physical therapy. It was my last time at p.t. and all we did was Cold Laser. After p.t. Bradley and I made a quick dinner to take in the car on our way to Phoenix to see Barbara Maxwell she did hypnosis/ relaxation on me and I did feel very relaxed. Bradley and I fell asleep on the way home from there. On the way, we watched President Obama's jets fly into Sky Harbor Airport on his way to the ASU Graduation. Tomorrow is yet another busy day.

May 12, 2009

Once again, another busy day! I had a really hard time with sleep again.. what a surprise. I got up around noon for lunch and filled out some paperwork for PPRC. Mom and I went to get Bradley from school then went to his house to get clothes. I fed the horses, and had fun being outside. We noticed that whenever I'm in the heat the ulcers pop out. A few that were nearly healed looked like huge tumors and stuck out really far and turned purple. When I got in the car i noticed they started bleeding. So we now think being in somewhere hot for too long is what makes them get worse, and bloody. When we got home, I decided since we thought it was the heat, I'd try swimming with Bradley. We swam for about 45 minutes, the ulcers didn't change other than turning purple and my leg was freezing cold and still is. It was weird not being able to actually swim but being in the water and having noodle races with Bradley was fun! I went to see Alainabefore I go at her choir concert! It was great, in my opinion better than Chandler's choir. I will miss her lots!

May 11, 2009

Today was good for the most part, still in lots of pain but before we go I want to see my friends. I tried taking a bath.. it didn't work so well, I got 7 new ulcers. Bradley came over for the night as usual and went swimming, I really want to but I can't with my leg. Mom and I went to the CHS choir concert. We took Marcus and met up with Joey, they did great!! Bradley might be staying with us all week, he won't like all the appointments but at least we'll get to see him before we go.

May 10,2009

Today was Mothers Day, I woke up a little earlier than usual, around 11. Dad made us omelette's for breakfast, then mom and I went to church. After church we went to see Lois and Marty, but she wasn't there and his daughter was. Marty is looking a lot better than he did last week!! I left the beads with them so Lois can make bracelets, she offered last week. She knows we are busy and enjoys doing that stuff. After we visited there, we came home and everyone was there. We just talked and hung out waiting for Bradley and getting dinner ready. I played piano for a bit feeling pretty good during the day, during church I didn't feel too good but it got better after sitting for awhile at home. Bradley went swimming, I sat inside watching TV, I haven't watched it in a long time and it was 100 out so way too hot. When everyone left we watched Extreme Makeover Home Edition, and I slept through the whole thing. I am exhausted, even though I got a descent amount of sleep, about 8 hours waking up a lot. I wanted to go to my room and fall asleep but mom kept bugging me so I couldn't stay asleep, and I'm now wide awake feeling miserable.

May 9, 2009

I slept maybe an hour or two, and woke up due to horrible pain not only in my leg, but also my stomach. Bradley was here so I decided to get up and be with him. We made some jewelry, went to the bead stores, and he worked on his picture book. We had a great time. I am dead tired so will write more tomorrow. This afternoon, I went to the movies with my 2 best friends, Alaina Haws and Kalie Fischer (Bennington). We saw The Soloist, an exceptional movie with a touching story, ate at Johnny Rockets, then wandered around the San Tan Mall, each buying lots. Kalie came up with the Names Flower, Bambi and Thumper and named each character after us, we went to the Disney story, and there was a nice sale so we each got our character. I am Flower, Alaina is Bambi, and Kalie is Thumper! I am dead tired now after trying on clothes, buying clothes, mothers day shopping and other random stuff. I did have a wonderful time and was very glad to see them. We're hoping to see each other before I go on Saturday.

May 8, 2009

Boy!!! Another long, doctor filled-busy day. I woke up, went to the coffee shop with mom, then we went to the police state and waited for what seemed like forever to interview an officer. Then we were late to the doctor, so rushed over there to get my leg checked out. It is looking better but some of the ulcers are as deep as the muscle and nerve layer of my leg Dr. Ciminello said. I was feeling great through the day today, made some arrangements with Morgan Misko, and talked to a few friends. After the doctor, we came home to a billion people wanting to hang out. We had to cancel our plans to go see Knowing with Joey at the drive ins because it was way too hot and mom and dad have a lot to do. I ended up going over to Joey's house and playing games with him, and badly loosing nearly all of them haha, that's okay I had a great time, and I'm so glad I got to see him before we leave!!! I really miss them ;) I was there for about 4 hours, Mrs. Casey went and got some dinner as we continued playing games and talking, mainly about music, ipods and life. He's been a such great friend to me. I got home and feel horrible so am going straight to bed, I'm dead tired and just feel like getting some rest. Bradley will be at our place in the morning, we will really miss him so might as well spend as much time with him as possible. I can't swim though because of the chlorine in the water P: I'm off to bed, hopefully! I took one of my pain pills in hopes that I'd fall right asleep and feel better but neither of those happened, and I threw up instead, now I feel disgusting. Night, or morning which ever you prefer.

May 7, 2009

Today we got a lot done, and I am really tired from it, but had a fairly good day, up until about 1 am (May 8th). I woke up and went to get a haircut and washed, then mom and I went to Chandler High School to visit the nurses for Nurses day, and tell everyone our great news about Boston. I'm really excited and nervous about going to Boston, its definitely going to be really hard, and I think it will be worth it, getting back to normal again. I am sorta freaking out about walking again, its been so long and I'm afraid its going to hurt a lot or I won't be able to because of my Achilles tendon or loss of muscle. We'll see. After CHS, we went to visit Lois and Marty Schwarting. Marty is keeping so positive as he is really suffering from cancer, but Lois is being a great nurse so he can be at home. After seeing them I had physical therapy, and Sue did the cold laser. It is a device that regenerates the mitochondria in your cells, which is the power source in your body and we were hoping that it would help with healing the ulcers, or get some movement back into my leg. Later on tonight Nick, Kelly and I went to see State of Play, I liked it a lot but towards the end it got pretty confusing. I was glad to see them and get out of the house before we go to Boston. We ordered RSD Awareness silicone bracelets today and are trying to figure out when they'll be here and how much they'll cost. When mom and dad went to bed, I made more jewelry and can't do it anymore. I think I might try watching Blues Brothers again in hopes of falling asleep. I was hoping to go to sleep when I got home from the movie, but that didn't work out too well :/

May 6, 2009

I woke up late to some amazing news. I am getting into PPRC in Boston on May 18th, I am very excited and determined to defeat this disease. I talked to a friend, Morgan Misko, she said it is very hard and you will have more pain, but it is totally worth it. Morgan is at PPRC right now for RSD treatment, we're praying she is healed. After making a bazillion phone calls to tell the good news, I realized I was supposed to be eating lunch, and changing and ready to go to the dermatologist, who looked at the ulcers on my leg. He didn't sound worried about them and said they wouldn't leave a scar, which is good. He re wrapped my leg, a few minutes ago it started coming off, and the gauze he insisted on using stuck to the wounds, pulling everything off the wound again. It started bleeding uncontrollably, so mom helped me clean them and re bandage them up. Having RSD and keeping your best of friends, is near impossible. No one understands unless they themselves have had RSD or another type of chronic illness. It's so hard telling them but its so hard keeping it from them in the same way. After the dermatologist today, we went to Sonic happy hour for a drink! That definitely made me happy, after sweating a ton and feeling super hot. Then, the Nolan's brought me flowers and blessing cards!!! They're gorgeous, I just had to take a picture! Then, the dreadful physical therapy. It wasn't bad today though, I did cold laser the WHOLE session so basically just laid on my back with a laser scanning my belly button down ;) After dinner mom took me for a ride around the block in my wheelchair, its really hot out :/ I started beading again but the beads fell off 3 times, so i decided to save it for another night when I wasn't in so much pain, then maybe I could concentrate. Instead I talked with my friend Jacinta, who also has RSD. I'm very tired and sore, and I want to sleep so bad but I can't fall asleep :( Hopefully tomorrow night I'll get nice and tired. We're leaving in 10 days, time's going to fly.

May 5, 2009

Today was hard, I got a whole 1 1/2 hours of sleep :( At 10 we had an appointment to see doctor Sweetman. She too was very concerned with the ulcers, they look horrible. I can barely stand to look at them when mom changes the wrap and cleans them off. Doctor Sweetman got us an appointment for Wednesday at 2:15 to see a dermo-pathologist about the ulcers all over my leg. She then got us an appointment with the Chandler Hospital wound center where mom was at when she got her varicose veins taken care of a few months ago. They are nearly sure my leg will end up with permanent scars. I am hoping they stop spreading all over my leg :( After seeing her, we came home and cleaned out the ulcers, well I watched Gilmore Girls as mom delt with it... We went to lunch with Geri Colgrove, a great friend, at Subway then she came over and taught us how to make an RSD awareness bracelet and a bookmark with beads. I'm working on the bracelets and bookmarks tonight. We planned a little going away party to help raise awareness and fund our trip. We are hoping a lot of people come and help us string bracelets and chat before I go, then hopefully a few people will buy either the crystal ones we're making or the silicone ones we're buying. We got the best call in a long time today, I was accepted for evaluation and will be staying for the program starting the first of June. Hopefully we can sell enough bracelets for awareness to help fund the treatment, its really expensive. I'm trying to keep my mind off of pain by making the bracelets, but it doesn't seem to be working too well unfortunately.

May 4, 2009

I was really busy today :/ I went to physical therapy at 2:30, but I was still getting more ulcers. As I was getting ready to go I was in a ton of pain, and my entire leg was bloody even though I just got out of the bath. Craig and Sue didn't want to do anything at physical therapy afraid to disturb the ulcers, plus it was really gross. Dr. Sweetman wanted to see the ulcers so we went the her office, but we weren't able to see her so just made an appointment for the morning. After Dr. Sweetman, we went to Dr. Ciminello to get the ulcers checked out. He ended up "patching" each wound and casting my leg. We are supposed to change it every day. I was put on an anti-biotic cream and a gigantic anti-biotic pill. After they patched me up we went home to get dad and were off to downtown Phoenix for a counseling appointment with Barbra Maxwell. As soon as we got home around 8:30 I retired to my room. My leg has REALLY been hurting extra bad lately and I'm not sure why :(.I'm hoping we can get into Boston really soon. I just want to get better, I hate the pain, the school, not seeing friends and everything else that's changed.

May 3, 2009

Today I woke up really late because I didn't go to sleep until really late (it was long past light out). Dad and I went on a drive out to look at some nice acre homes. My leg was really bothering me today. Two of the ulcers opened up and made my legs start hurting even more. The pain is now a shooting burning pain, like if you have a cut and get lemon juice in it, only the pain is covering my entire leg. Every time I move my leg it seems to hurt a lot more, dad thinks its because the nerves are messed up the blood flow is all messed up as well. After dinner I took a nap and was hoping to stay asleep but as usual, I woke up at 9 and can't get to sleep. Now my pain is horrible, I can't get my mind off of it.

May 2, 2009

Today I woke up a little earlier than usual. Dad was going with some employees to show the new Nissan Cube to the public, so I decided to take on the long day with him. We were gone from 1-9 pm. When I got home I was dead tired and left with a leg that was really hurting. I had a fun day though, I created a special liking for the Aqua Blue Nissan Cube. My leg is hurting really bad, and I just realized I now have 13 RSD sore things on my leg. I can't sleep because of the pain but hopefully soon I'll be tired enough to konk out because its already 4 am.