RND. See the light.

"She's a mess of gorgeous chaos, and you can see it in her eyes."

"Sometimes the healing is in the aching."

"One day in Retrospect, the years of struggle will strike you as the most beautiful." - Sigmund Freud

"If you want to fly, give up everything that weighs you down."

     Sooo someone decided to make today the "unofficial RSD awareness day" Kind of ironic because 3 years and 4 days ago, at around 7 am, I was on the operating table for the first time. That surgery is what brought this disease into my life. RSD is rated a 45 out of 50 on the Mcgill pain index. That is above cancer, childbirth, and traumatic amputation.
     When I went to The Children's Hospital of Philadelphia for treatment of my RND, my doctor asked me to describe to him how my RSD pain feels. The only way that I could describe it was the following: "Take a cigarette lighter and light it, keep the flame burning for about 30 seconds, then let the lighter go out and immediately push the top of the lighter (where the flame comes out) onto your body part of choice. Then, in addition to your burns, you have to replace your clothing with barbed wire wrapped around your body, and push the spikes into your skin to simulate someone brushing against you, shaking your hand, or giving you a hug. " I say that this comes close, but it is not exactly like RSD, to be exactly like RSD, that constant burning and stabbing pain in response to touch, change of temperature, or movement, has to be felt all the way down to the bone.The entire body part has to feel that intense pain at the same time. Now imagine that pain being there constantly, sometimes for hours without letting up even the slightest bit. Only then will you have a decent understanding of RSD pain.
      For those who have no idea what the heck I'm talking about, RSD is a chronic neurological syndrome that is characterized by a severe burning pain that is often described by patients as feeling like they are on fire. There are pathological changes in the bone and the skin, such as bone loss, and shiny, hairless reddish purple skin. Many RSD patients have excessive sweating all of the time in the affected area(s). The tissues of the effected area(s) swell. Most have an extreme sensitivity to touch (allodynia). Something as light as a breeze can cause excruciating pain. Even wearing clothing over the affected area(s) can be painful. This last symptom can also cause people with RSD to pull away from the ones that they love. Touch is a sign of friendship and love. Many people can’t understand why you are constantly pushing them away and asking them not to touch you no matter how many times you explain why! Why? Because to someone with RSD, touch is extremely painful!
     Anyone can get RSD! It is more common in women than men and the number of pediatric cases is on the rise. One of the biggest challenges that the RSD patient face is the lack of proper understanding and education of pain in the medical community.
     The loss of employment, social structure and family life are all struggles that the patient with RSD may be faced with. One of our biggest battles is that of getting treatments covered by health insurance and workman’s compensation insurance.The inability to get insurance companies to recognize and pay for a multidisciplinary treatment team, is a challenge in and of itself insurance companies don't always understand the importance of five weeks in a treatment program for RSD, but they do understand that it's not cheap, and in my experience with friends that had trouble with their insurance companies, they won't hesitate to cut you off!
     RSD is a malfunction of part of the nervous system that usually develops in response to a traumatic event such as an accident or medical procedure. A minor injury such as a sprain or a fall can also cause nerves to misfire sending constant pain signals to the brain. There is some sort of disconnect in our nervous systems that researchers don't quite understand yet.
     I suffered from this disease undiagnosed for two very long years because of lack of awareness. Although those two years were the hardest years of my life, I would not change a thing about them because for better or for worse, it has made me into the person that I am today. Without going through the things that I went through, I would not have met my the amazing people that I have fought alongside throughout the process of getting through this trial in my life. I love my CHOP family soo much, and I can't imagine my life without them! I saw a news article today stating that CHOP is the number one pediatric hospital in the nation. I know, without any statistics that this is true just from my past experiences and knowledge of the staff there. CHOP saved my life, and then later improved my quality of life so now I am once again a normal (well... relatively normal) healthy teenager, with a long life ahead of her thanks to them! What more could I ask for?

I know that this is the hardest thing in the world to go through. but you are never alone in this. I am always here for any RSD angel that needs a listening ear. Remission is possible. You may not achieve it tomorrow, the next day, or even the day after that, but you have to carry on and believe that though you,your parents, and even your doctors, may not know when, you will eventually turn a corner and see the light at the end of this seemingly endless tunnel. I believe in you. But what can I do aside from letting you vent, and writing these posts that I'm not actually sure anyone actually reads...? You have to believe in you.


Song(s) of the day:
Ghosts That We Knew - Mumford and sons _(for an RSD sufferer deff! and for anyone else too!)
Where Are You Now - Mumford and Sons

Meliora :)