NYC and Relationships

Hello All!

I am back once again. Like I said I had a wonderful and busy trip to the wonderful City of New York. My mom, sister, niece, and I took this trip to participate in the Achilles Hope and Possibility Walk with Team RSDSA. I absolutely love that the Achilles Hope and Possibility Walk was founded. It has brought together people who are able bodied, those who have amputated limbs due to war or other reasons, those in wheelchairs, and those that can walk but barely just make it across the finish line. This walk helps bring awareness of all of the conditions out there that people live with on a daily basis and brings every person who participates either in person or virtually, hope. I love participating in this walk and meet others who have RSD as well. The first time I participated in the walk was in 2007. My RSD just came back the January before and my mom believed that coming to the walk would be good for me to meet others who had RSD. I couldn't get over this overwhelming feeling I had that I felt normal. There were others around me who understood and felt the same pain I did. So when we went back this year I was excited to feel that again and meet others like me. The final numbers according to RSDSA were that 300 people showed up in person and 190 did the virtual walk, this was the biggest walk to date. I did see my good friend Marsha, whom I meet the first time around. We have stayed in contact since and we were both excited to see each other. I was able to finish the full two miles of the RSDSA portion of the walk. The previous time I could only walk the first mile and had to be pushed the second. I had set my goal for accomplishing the two miles so I was excited I was able to do it. I hope and pray Marsha and I will be able to walk the two miles together in the near future.

*Marsha and I at the Walk *

*Jim Broatch and I - He is the director of RSDSA*

* My sister, niece, mom, and I*

For the rest of the day the walk occurred my family and I explored the city. We took a tour bus and went down to Soho where we grabed some lunch. Later that night we took a night tour of the city which I highly recommend. For the night tour we crossed into Brooklyn over the Manhattan Bridge to see the lights of Manhattan at night. Since I ended up pushing myself at the walk I ended up with a severely swollen right foot and leg. So that my body could get a bit of a rest my mom, sister, and niece went on the rest of the tour the next day while Marsha and I met up and did our own tour. We went to Madison Square Garden and then out to lunch. Due to her initial injury she has a hard time on the phone so her and I text for the most part. It was great being able to talk like we never were apart for 3 yrs.

*In Little Italy*

* NYU Medical Center*

*Times Square*

*The WNBA Basketball Court at Madison Square Garden*

Having had a great time in NYC just showed me that I need to do something to help my family and friends understand a bit more about my RSD without scarring them. I feel like people either treat me like I'm 100% healthy or 100% disabled. There are many times when I can walk a long distance but I may not be able to the next day. That is simply the RSD and its hard to predict how I'm going to feel day to day. Its a hard concept to grasp, and would think it would be hard for some people to grasp. I'm going to addressee this topic more as I believe it needs addressed, not just in my life but for all of us who have chronic conditions .

Being an Optomist

There are many factors that affect how a person responds to treatment when they have a chronic condition. Attitude is one of the major factors that comes up. With RSD it is hard to exactly be "positive" but having a glass half full type of attitude is going to be more helpful then a glass half empty type of attitude.

When my RSD came back at 17, I had to get home tutored because my pain was so bad. I literally thought my life was over especially since I hardly had a social life and I was in the most horrific pain. I knew if I wanted to turn my life around I need to do it myself. My friend and I would try to find one thing that entertained us everyday. We would make sure that these things were positive and would put a smile on our faces. I started developing a different attitude about life and about my RSD. I actually didn't hate my RSD, I accepted it. When I would go in for treatments I would make sure I had my sister paint my toenails a hot pink, my signature color. The Dr's and nurses loved the fact the my toenails were pink and could always identify me by that. I would go into procedures or surgery smiling knowing that this could be the procedure or surgery that could be the one that provided me with the relief I needed, thankfully my SCS did it.

Now that I am in college and around a diverse group of people I can see how being an optimist helps with not only chronic illnesses but also life in general. I help co-run a group on Facebook called RSD aka Really Sucks Dystrophy. I love helping co-run the group. I have actually made some of my best RSDer friends from the group. Ive noticed though that people's attitude's about their RSD are reflected on how others feel about their disease. This was actually mentioned in a NY Times article that if the group's attitude is negative then the members attitudes in the group is most likely going to be negative the same goes for the positive side.

I know RSD isnt the easiest disease to live with but we can have a say if it is going to control our lives. I refuse to have a negative attitude and let my RSD affect me like that.





NY Times Article: http://www.nytimes.com/2010/03/25/technology/25disable.html?WT.mc_id=TE-SM-E-FB-SM-LIN-OSN-032410-NYT-NA&WT.mc_ev=click

My friend Haley and I, Summer 2009

A Great Day

I have been exceptionally busy the last few weeks with multiple tests. It seems like I have one right after another. Once I get done with one I start studying for the next. Last weekend there were several points that it seemed that I just couldnt study anymore. Thankfully my family came to the rescue with a family dinner earlier yesterday evening celebrating my Mom's and Sister's Birthdays. We went to a Mexican Restraunt which is about halfway for me and for my family. I'm not a big fan of Mexican and getting a meal which could satisfy my diet and wouldn't kill my stomach was hard and pretty much impossible. My other sister had gotten a vegetable fajita dish that I should have gotten and she let me have some of it.

Much to my mom's and sister's surprise my brother and his wife had asked the staff bring in the cake that was bought for them. The staff sang to them in Spanish, it was so much fun. I broke my no eggs, no milk just for a little piece of cake and I didnt eat the frosting or artificial coloring.

The warm weather has been teasing us here. It is currently Thunder Storming out. Im looking forward till the day that the nice weather is here to stay for awhile at least.



Sending Healing Thoughts!

Pain Management

I have always been blessed when its came to Pain Management. When I was first diagnosed at 12 yrs old by a Orthopedist I was referred to the Cleveland Clinic's Pain Management Dept, to the Orthopedic's college who happens to be the head RSD Dr. in the Department. Since then I have gotten great care.

My Dr. has always listened to me, my file is even red flagged, not by my choice or my mom's but my Dr's. He understands that if something is wrong that we would want to get in asap, and does his best to do so. He has fit me in between his scheduled appointments before. I am very grateful that I have my Dr. He's treated me for the last almost 8 yrs. He has never given up on me and as said by his Nurse Practitioner that Im one of his miracle patience, since I was able to re-gain my life.

I think its important that people are able to get the pain relief that they need. If its going with traditional western medicine, non-traditional eastern medicine or even a bit of both. Pain affects your body by causing other parts of your body to hurt. Having ways to help treat that pain whether it be pain medicine, SCS, acupuncture, or even food is not only going to help you feel good knowing that your doing something to treat your pain but actually reducing that pain.

I have had a supper busy week. For my pain I am back on my original medicine, ultracet and tramadol. My Dr has suggested I take two Tramadols since I haven't tried that yet. I have been on two ultracets but taken off because the amount of tylenol. I was then reduced to one tramadol and the pain was bad. I was then put on the one ultracet and one tramadol (taken together) to help reduce the Tylenol amount but get the benefits of the Tylenol). I am still deciding what I am going to do since it seems that my body needs the tylenol in the ultracet for the anti-inflammatory affect. It would also help if it stoped snowing!...lol Driving home today for spring break it looked more like winter break, especially when I got to my exit which is right were the snow belt is.

Here is a youtube video of my Dr, Dr. Michael Stanton-Hicks on Pain Management
http://www.youtube.com/watch?v=5QIc4hZlRJQ