A day in the life of an RSD patient
(continued)

There are three special groups that I would like to mention here that amaze me in what they do. For those of you who do not fit in one of these groups or for the loved ones and Doctors reading this, imagine yourself in their shoes for a moment.

The first one is very dear to my heart. It is our RSDHope Teen Corner for teenage patients or teens with loved ones who have RSD. It is special to me because I got RSD when I was 14 and know a lot of what they go through each day. If you haven‘t been there, please drop by and see what amazing things our lil‘ sisters and brothers are doing. (www.rsdhope.org/Living/TeenCorner.asp)

Imagine how difficult it is to have RSD as a teen or younger. Many miss out on a normal childhood because of the restrictions placed on them by the RSD. Think of the hustle and bustle of a school hallway, or trying to sit at those desks all day despite the pain. How many of you could study and actually remember what you studied in order to take a test? How many of you get jolts of pain when someone touches your RSD limb? Could you protect it in a crowded hallway or lunchroom? Add in the fact that many parents do not share completely what the Doctors are saying or allow the child patient to participate in the choices of treatments of their own bodies! These kids are surviving and succeeding and they are amazing to me!

The second group is a new addition to the RSDHope family. The RSDHope College Quad is for College students, and college-age students, with RSD. (http://www.rsdhope.org/Living/CollegeQuad.asp)

These young ladies and young men carry a heavy workload and experience a lot of the same problems as mentioned above. In addition, most of them are away from home where they had been getting help from their loved ones. Nor do they have their Doctor right nearby. In addition, they now have to try and educate their roommates/dormmates and Professors about the disease so they have some understanding of how they will be affected.

I was very pleased when this group decided to join our family. I too went to college with RSD as well as worked full-time and was involved heavily in the College Theatre. I remember how tired I was all the time and the pain I was in. I remember how extremely difficult it was to study and remember enough for the test. Getting up for those 8 am classes was no picnic either. So these students deserve a round of applause from us. The example they are setting and the accomplishment of graduating, some with High Honors, is tremendous!

The third group that amazes me encompasses parents who have RSD and are bringing up children. I cannot relate to this but I can only imagine the extra stress this puts on your RSD. I realize that for most, your children are the reason you go on fighting and you wouldn‘t give them up for the world, but the extra challenges you face, from logistics to financial to the natural extra commotion, must take an extra toll.

Not to mention trying to explain to them as they grow older why you cannot do a lot of things with them that other kids parents do, physically or financially. My hat is off to you. That is if I wore a hat, which I don‘t but if I did it would be off. Of course then I wouldn‘t be wearing it anyway, well, you get the idea.

If you have those days when you need a boost or need some ideas on coping with your RSD, please visit http://www.rsdhope.org/Living/coping.asp

The bottom line here and the point I have tried to get across is that when you have RSD, you have to constantly think about how your actions, whatever you are going to do that day, will affect your disease and your pain level. All in all, it is a full-time job being a chronic pain patient, and one with no vacations, terrible benefits, and no way to quit.

Peace, Keith Orsini, Director National RSDHope Group www.rsdhope.org

© Keith Orsini
February 2001

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