I was trying to keep to a self enforced schedule of posting on Sundays and Wednesdays, but this is a weird week for me, so here I am on a Tuesday. And, this post may be a bit all over the place.

January is typically a rough month for me. The 2nd is the anniversary of my Mom’s death and at some point every January, I see my retinal specialist; this year, it is today.  These are, and will remain, difficult things for me, but this year, I came into January feeling more positive and less full of dread.  Yesterday, I read an important piece by, “A Gypsy’s Tale“, and it helped me see that the reason I am feeling different this year is due, in large part, to the goodness of others.  I hope you will take the time to read her extraordinary post.

Every year, when I see Dr. Sarraf, I go with some anxiety.  For a number of years, I went to see him and he told me (always with great enthusiasm) that my vision was stable.  I felt incredibly lucky, but began to expect the news; last year, he told me that my vision had deteriorated.  It may sound a bit nuts that I have to be told whether or not my vision has gotten worse, but it is actually really hard to tell.  RP progresses pretty slowly (in my case anyway) and there have been years when I was convinced it had gotten worse when it hadn’t, and years I thought it was stable and it wasn’t.  Basically, you don’t know what you aren’t seeing because you can’t see it.  For years, I thought I was seeing normally and it turned out I had this crazy disease and was going blind.  Anyway, I digress.

Today, I am anxious, but ready for whatever he may tell me and feeling fortunate for all of the love, support, kindness and goodness that I receive from others.  I feel fortunate to be a part of an extraordinary community of kind, caring and intelligent people. I feel fortunate to have a doctor like Dr. Sarraf and to be able to go to one of the best eye institutes in the country.  I feel grateful for the vision I still have.

Todays visit will also be different because I am going to talk to Dr. Sarraf about genetic research.  My tendency has been to keep myself away from news about the research on retinal disease; I followed it in the beginning, but it felt as if I was being given false hope over and over again, and at the end of the day, I still had RP and had to learn to live with it.  Recently, there has been a lot in the news about a new FDA approved gene therapy that treats retinal dystrophy (basically, deterioration of the retina), but that term is a huge umbrella over a multitude of genetic mutations.  It may sound nuts, but when I heard the news, I wasn’t excited; I took it in stride, but my step mom read about it and got all excited and saved the article for me and  insisted I talk to Dr. Sarraf.  It is hard for her to understand that I don’t really want to know about the research, that all of these years, I have been living with RP and trying to accept the reality of my vision and how that impacts my life; but, this was the first time she has ever talked to me about RP (it can be easy to ignore – that is another post for another time), and I was touched by her enthusiasm.

So, today I will talk to Dr. Sarraf about genetics and ask him to refer me for genetic testing. I am stepping onto a new path in my RP journey, but I am curious and open to learning more and it is probably about time.

 

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