Wednesday, December 12, 2012

What RP is Like

   Well, actually I should call this blog, What RP is Like for Me, because although symptoms are some the same for everyone with retinitis pigmentosa, each case is unique.
     For example: the eyesight is always deteriorating due to the diseased retinas containing bone spicules and atrophy, pigment which the doctor can see with a light through a dilated pupil, and the person with RP will always have loss of peripheral vision and usually one degree or another of myopia, in my case extreme.  Most people will eventually lose macular vision as well, but now with 15,000 IU of vitamin A palmitate daily, some adults have found less rapid vision loss, over a one-hundred year study.  Cataracts are a bi product and often the doctors say it will not help to remove.  This is too complicated for me to explain, except that the retina has already had so much death of cells, and also in my case, being totally blind except light in my right eye, it may be too risky to do surgery when a person only has one eye.  All I know is the doctor told me it would not help, that it was just part of RP.
     When I was a child, I was legally blind in the right eye, even corrected and legally blind in both eyes without glasses.  When I was in my early thirties, the doctor said I could not drive at night anymore.  When I was forty-seven contact lenses could no longer correct my vision, and I stopped driving.  Also, my eyes started to get infected a lot, so I had to stop wearing eye make-up for a long time.
     I qualified to go to the South Carolina Commission for the Blind, which I did for a total of about five and a half months.  It was a good experience and I learned a lot, and I made friends with clients and instructors.
     RP is very misunderstood, because the person may have some residual central vision and not seem blind.  It is too complicated to describe the way I see, so I won't, because it would exhaust me.  I have had rude things said to me for tripping on things, but also rude things said to me because I was getting around so well in a well lit room. 
     If I go out at night, I use a mobility cane.  Sometimes if I am with someone who does not mind me holding their arm, like a date or a close friend, I will not bring my cane.  In the daytime, I often do not need it, but have regretted not bringing it, when I have run into things or people.  Still, I do not like to look blind.  I am not blind, just visually impaired.  I can see to a degree.  On rainy days like today, it is hard to see, especially indoors.  However, ironically, bright light and bright sun, both in and out of doors requires me to wear dark glasses given to me by the CfB, because the eyes of a person with RP are very light sensitive.  We usually would rather watch television than go to a movie theater, because it is hard to see the entire screen and you end up turning your head from side to side.  Also, the light of the TV helps to clarify it, because movies tend to be dark.  When I went to see those crazy Saw movies with my kids, it was so dark I could not see well, but that is a good thing, lol.
     Someone said to me, "I'm not blind, but I have other problems."  
     I said, "what are you talking about?  Being blind is the least of my problems."  In another article I might tell you ways in which this has been a blessing, but that will take some deep thought, which I am not in the mood for now.  Love to all.  
     Note: I used the sexy cleavage picture just to show that visually impaired people can still be sexy...  

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