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• How long before you accepted it?
• Posted: 2008-02-19 00:01:48 By Brenda P
• Hello there,
  
  I was diagnosed today with RP. I have always had problems seeing in the dark but have only recently suspected that I might have RP.
  
  I was just wondering how long each of you went through the "grieving" process after hearing of your diagnosis, and before you finally entered the stage of "acceptance."
  
  Thanks.

• Re: How long before you accepted it?
• Posted: 2008-02-19 00:40:18 By Mark L
• I was told I had RP in December of 2007. Christmas was very difficult but I had good support. It took me a good month to finally realize that this is not a disease that takes your life but frankly makes you appreciate everyday that you can see.
  
  Do you have a good support network around you ?
  
  - Mark

• Re: Re: How long before you accepted it?
• Posted: 2008-02-19 00:51:55 By Brenda P
• Thanks Mark, that is a great way to think about it.
  
  I have a great support network, but I would like to somehow extend that to those who also have the disease.
  
  Like I said, I was just diganosed today but hopefully I can find someone in my area (Northern VA/DC) that I can reach out to.
  
  

• Re: Re: Re: How long before you accepted it?
• Posted: 2008-02-19 01:38:57 By Mark L
• I know that it's tough just learning this but believe me it gets better. There are so many unknowns such as the progression of the disease, when someone will find a cure, and just how bad it will get.
  
  The key ( and I know it's hard right now ) is to keep a positive attitude. I immediately started taking vitamins and started a healthier lifestyle. My doctor gave me some great advice....do all that you can do and don't worry about it. I know it's easier said then done but it keeps me going !
  
  My email address is marklivings@mac.com if you want to chat. I'm in Florida BUT I don't think that email cares !

• Re: Re: Re: Re: How long before you accepted it?
• Posted: 2008-02-19 01:51:30 By Brenda P
• Thanks Mark!

• Re: Re: Re: Re: How long before you accepted it?
• Posted: 2008-02-19 01:51:34 By Brenda P
• Thanks Mark!

• Re: Re: Re: How long before you accepted it?
• Posted: 2008-02-20 13:00:58 By John C
• Brenda, I also live in NOVA/DC region. This is the first time that I have ever been on this site and am drawn to the quick access to information that it provides. I am 28 and was diagnosed with RP when I was 12. The last couple of years I have started to notice a big change in my visual field. Feel free to contact me if you have any questions or would like to chat about RP. jbcolburn@gmail.com

• Re: How long before you accepted it?
• Posted: 2008-02-19 03:04:50 By Al U
• Kind of sad to say that I am still grieving. Diagnosed in October 07. I guess it is because I already lost so much of my life and what I thought my future was going to be when my then fiance left me a because of it. It is difficult because I had to deal with grieving two things. Going throught the Holidays, Valentines, and other significant dates for us as a couple wasn't/isn't easy. Now I am waiting my genetic testing to see if it is the dominant form. Have to start life all over as far as looking for a wife and wanting kids. Everything feels rushed now.

• Re: Re: How long before you accepted it?
• Posted: 2008-03-10 13:53:13 By Kendra L
• Al U,
  
  I was just scrolling and found your reply. My husband has RP. He was diagnosed 22 years ago. He told me almost immediately. It was basically dormant until 11/06 when all of a sudden he went from being able to drive and build houses to having less than a 10 degree field of vision. There was no gradual about it. Anyway, since then we have discovered that his daughter from his first marriage has it. Our teenage son has no signs and we have a 20 month old. The right person is looking for more than your vision. It is your heart. And even though there will be changes and differences for our daughter, there will also be new doors and experiences for her. None of the parents of this beautiful child would change having her and neither would she. So let God, or fate, or whatever your belief is, control that aspect of your life.

• Re: How long before you accepted it?
• Posted: 2008-02-19 10:23:03 By mary o
• Hi Brenda! I was diagnosed in 1991 but never had any problems until Jan. of 2007 when I almost had a bad wreck. I didn't realize my visual field had become worse. Went to my doc and found out I had 10-15 degrees left. Then 1 month after that my 23 yr. old daughter was diagnosed with rp. I couldn't talk about it without crying for a good 6 months. It has taken me a full year to go through the grieving process. I've found that you have to take control of the rp...you can't let the rp take control of you. For example, shopping for hats that keep the sun out of my eyes. I've never been a person to wear hats, but it's fun to try different ones on and I look pretty good in some of them!!!!!!! HAHA!!! I've accepted the fact that on cloudy or rainy days, I don't see very well. Everyone is different in their grieving process, but you CAN do it! Try to think of everything that you can do and not what you can't do!

• Re: How long before you accepted it?
• Posted: 2008-02-19 10:25:27 By mary o
• Hi Brenda! I was diagnosed in 1991 but never had any problems until Jan. of 2007 when I almost had a bad wreck. I didn't realize my visual field had become worse. Went to my doc and found out I had 10-15 degrees left. Then 1 month after that my 23 yr. old daughter was diagnosed with rp. I couldn't talk about it without crying for a good 6 months. It has taken me a full year to go through the grieving process. I've found that you have to take control of the rp...you can't let the rp take control of you. For example, shopping for hats that keep the sun out of my eyes. I've never been a person to wear hats, but it's fun to try different ones on and I look pretty good in some of them!!!!!!! HAHA!!! I've accepted the fact that on cloudy or rainy days, I don't see very well. Everyone is different in their grieving process, but you CAN do it! Try to think of everything that you can do and not what you can't do!

• Re: Re: How long before you accepted it?
• Posted: 2008-02-19 10:43:33 By Brenda P
• That is very inspiring. Thank you.

• Re: Re: Re: How long before you accepted it?
• Posted: 2008-02-19 14:32:57 By Katie V
• Brenda
  
  What a great question. I am so sorry you were diagnosed with RP. That must have been tough for you. How old are you and what are your visual fields at?
  
  My name is Katie and I am the sighted mom of Meghan 12 with RP. She was diagnosed 2 years ago. Night blind and 40 degrees peripheral left. I cried for days and days. It took a while for me to feel better. Though we do not enable her and we are living our lives to the fullest there is not a day that goes by that I don't worry about her future. She is a very outgoing child and has made her RP diagnosis easy for us. I always wonder how she will feel in years to come when her vision gets worse.
  
  I guess you have to accept it to move on and have a great life. Do you have to like it NOPE?
  
  Good luck
  
  Katie

• Re: How long before you accepted it?
• Posted: 2008-02-28 16:30:31 By Janet C
• I'm not sure you ever completely get over the grieving process. I'm lucky to have people around who are willing to help when needed. I was ordered to give up driving upon RP diagnosis in October 2005. That was the most difficult to deal with. Got a real laugh upon cancelling auto insurance to find out I was only worth $8/month. I find when I look for a good laugh in a sad situation it makes it a little more tolerable...At 56, I was a part time stay at home mom who was going to get back into the work force. That dream was dashed with not being able to drive anymore and the difficulty of finding a job when I can't see well. I'm on the verge of getting a cane so that when I'm out and about on foot, others get the idea I might not see them. This website has been very helpful.

• Re: How long before you accepted it?
• Posted: 2008-03-07 01:44:18 By Jill H
• Hi Brenda,
  
  My name is Jill. I'm 34 and was diagnosed with RP 5 years ago. In the last year i have become more involved in our local FFB chapter and participated in Oregon's first Visionwalk as a team captain. I think this is the first year that I feel much better about my diagnosis because I have found a positive way to deal with it by meeting with others who are like me and most importantly by helping to raise money for the FFB. I can't find a cure myself, so this is my way of helping out and feeling like I'm doing something to "fight" the disease. The hardest part that I had dealing with RP was not being able to do anything about it so Visionwalk and the FFB meetings became my outlet. Best wishes to you!

• Re: How long before you accepted it?
• Posted: 2008-03-10 20:25:15 By Sarah D
• I was diagnosed with RP five years ago at 17. The hardest thing for me at the time was not driving (the things you care about in high school!) but eventually I got over that when I realized there are a lot of things I can't do. RP makes my life harder but it's not terminal. I have "accepted" RP and have made the necessary efforts to living with it (cane training, getting SSI, enrolling in my university's disabled students program, etc) but I don't think the grieving process ever ends. Since RP is progriessive and unpredictable, I find myself feeling sad when I can no longer do things I used to be able to (like play soccer or see stars). I don't let it get me down all the time, but I do have my moments on bad days. It helps having a support network and trying to stay positive, but the most important thing I learned is that it IS ok to cry and be sad. Life is hard at times for everyone, but we have unique struggles most people can't relate to. My philosophy is that tomorrow is another day and I'm not going to let RP stop me from experiencing it. I gathered enough courage to try snowboarding (with a friend of course so that I wouldn't crash into other people) and to study abroad in Ireland. I've let go of my dream job in forensics (can't depend on my vision to analyze evidence) but I'm still in school getting a degree in sociology. I'm just trying to figure out my life as I go, just like everyone else.
  
  It gets easier and harder at the same time, but I think you'll find out there's a lot you are capable of that you didn't realize.