What is Retinitis Pigmentosa
Retinitis pigmentosa, or RP, is a genetic eye condition. In the progression of symptoms for RP, night blindness generally precedes tunnel vision by years or even decades. Many peop...
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DO I STILL NEED MORE HOPE?
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I AM 36 YEARS OLD AND I'VE BEEN HAVING RP SINCE I WAS SMALL. I HAVE FIVE ADORABLE KIDS AND A SUPPORTED HUSBAND BUT SOMETIMES I GET TIRED OF WHAT I AM DOING HERE HAVING TROUBLE SEEING AT NIGHT. I HAVE NIGHT TIME PROBLEM, SOMETIMES WE GO TO A PARTY AND IT IS DARK AND PEOPLE LOOK AT ME LIIKE POOR LADY. I HATE IT. I HAVE TROUBLE DRIVING AND HELPING MY KIDS WITH THEIR SPORTS. I CAN'T DO ANYTTHING. I THINK OF MYSELF.. WHAT AM I DOING HERE? WHY DID THIS HAPPEN TO ME? WHY ME? THE MAIN REASON I AM HERE IS MY KIDS AND MY HUSBAND. THEY HELP ME ALOT. BUT I WANT TO STOP THIS. I WANT TO BE NORMAL. HAVE A NORMAL LIFE INSTEAD OF HAVING TROUBLE. I AM JUST HERE FOR THEM. IF NOT I WOULD NOT BE HERE. HELP ME FOR SOME SUPPORT AND TELL ME DO I STILL NEED TO WAIT FOR HOPE AND IT'S BEEN 30 YEARS OF RP. HELP ME...
Posted on 09/10/09, 04:09 pm |
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Hi Dora,
I can relate to your frustrations, but at some point the best thing to do is make changes in your life to make things easier. I know it sucks, I feel sorry for myself sometimes but that doesn't help - at all. I was really angry at a doctor who told me "plan for the worse and hope for the best". I felt like punching him, but he was right. Try to attend an FFB or NFB meeting. I guarantee you will meet people with worse vision, and feel less sorry for yourself. I'm sorry if that sounds cold, but it has really helped me cope. There is always someone worse. It sucks, to go through this. I really believe there will be a cure or at least treatment in a few years. But, for now you need to find happiness and accept it, for what it is. Sounds like you have a great family and they need you. Hang in there, appreciate every minute. I saw that you have hearing loss too... Do you have Usher's? If so, do you know which type? 
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I HAVE BEEN AND STILL AM IN UR SHOES. I HAVE RP AS WELL. MINE SEEMS MORE PROGRESSED THAN YOURS IT SEEMS IE I HAVE NEVER BEEN ABLE 2 DRIVE, I DRAW FULL DISABILITY ETC. NOT ONLY THAT, MY 7 YR. OLD SON HAS IT AS WELL . SO I HAVE THAT GUILT 2 CARRY ON A DAILY BASIS. HE IS ALREADY LEARNING BRAILLE IN SCHOOL. WHEN I GET THE FEELINGS OF FRUSTRATION AND HOPELESSNESS U R FEELING IT IS HARD 4 ME 2 SEE ANYTHING ELSE. BUT WHAT I HAVE FOUND THAT HELPS ME IT TO LOOK AT MY SITUATION AS A BLESSING IN WAYS OTHER THAN A CURSE. FOR INSTANCE, BCUZ I HAVE LIMITATIONS I FIND MYSELF SEEING THE WORLD AROUND ME IN WAYS SOME PEOPLE NEVER WILL. IT SEEMS EVRYONE IS SO BUSY THESE DYS THEY FORGET 2 SLOW DOWN AND SEE THE SIMPLE THINGS. LIKE HOW RED A NEW ROSE IS. OR HOW BLUE THE SKY IS AFTER A SUMMER SHOWER. BECUZ I CANT WALK AS FAST AS MOST AND HAVE 2 WALK EVRYWHERE, I HAVE THESE OPPORTUNITES. IT SOUNDS RATHER CORNY, BUT IT IS MY OUTLOOK ON THINGS.
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