Ok, that phrase alone - proliferative diabetic retinopathy - has got to be sending a chill up anyone's spine who is a PWD like me. I've been racking my brain over this for about 48 hours since my diagnosis (Friday 7/29/11). It wasn't a surprising diagnosis. After all I have diabetes since 1989 (22 years this December) and it is a complication that as we get older (44 right now) comes with the disease. That and a personal inability to control it effectively, until at least these last six months, probably have led to my downfall.
Now before you go and think, "Oh no he's blind," or "Pretty soon he'll have a guide dog," STOP. I am not blind yet, although admittedly I am taking great pains to write this without too many spelling errors and literally have my face inches from my laptop screen. I know BAD thing. Good news, we caught it. Bad news, well it's not curable. Even worse news, I don't quite know how it will affect me and my ability to work. I am at computers every day, sometimes 6-8 hours a day, looking at spreadsheets, small type, and other items. My work is all about detail. Spelling does count. Especially when you are dealing with money coming in and out of a company and transposing that. Or if you are working as a notary public and ensuring everything is complete in a document, your journal and even making sure you put your seal in the right place.
As you can imagine, given the last six months since I started my leave of absence, I have had a number of challenges cross my path. First the angina which led me to my new doctor and treatment team. I can say today that even though I still occasionally have "twinges," my heart is functioning normally - two echoes’ (treadmill and "dye") appears to have returned unremarkable. My kidney functions are a roller coaster still at best. My GFR numbers are slowly dropping as my serum (blood) creatinine numbers are rising. That is not a good thing, but it is more a "wait and see" approach. I can reluctantly live with that. My diabetes which was WAY out of control (13.9 A1C in March 2011) is now under much more tighter control being on Lantus and Humalog and on a much better and more understandable algorithm...the proof was a 6.9! I am nothing by psyched for that! I have to follow-up with a urologist due to some issues which I will not discuss here due to the more adult nature of them, but sufficed to say are diabetic related and something a 44 year-old guy should not be having. And now....this.
I was asked during a follow-up class at the diabetes center I attend in San Francisco by one of the CDEs (Certified Diabetes Educators) who also is a RN, "Anthony, how are you coping?" Admittedly, some days very well. Others not so well. When you are juggling your living situation (admittedly alone and let's just say not in the best of conditions (no not homeless)), your work situation (which is about to be decided now with this DX), and your health...not to mention your own economics and that of the country as it relates to you...well I think you can all see what I am facing. Yes I have even thought about asking to see someone professional. I think it IS that time.
So back to the newest diagnosis. In layman's terms, I am growing blood vessels where I shouldn't be. Sounds like something out of a sci-fi movie (ATTACK OF THE ROGUE BLOOD VESSELS). But add to that I have swelling in my eye and I have a "hole" in my eye. No not my pupil but a little "hole" in the macular. When you can't see street signs about 30 to 40 feet ahead of you, even though you KNOWS what they say from memory, well that's what I see. And yes, it is worse in the AM when I wake up, and yes, it's hard some days to be on the computer, which has been MY lifeline these last six months. It’s hard to chat when you have to press your face almost to the screen. I’m six inches away now and even with stronger bifocals the letters are there but with a slight haze to them, like a fog.
Phew. Well that felt good to get it out of me. But as you all can see, diagnosing and coping are two totally different and yet related things I have to face. The diagnosis, treatment and follow-up, well that's a given I cannot withhold that. The coping, the insurance, the potential of not being able to return to work when my LOA ends and having to do everything related to that, well that's another story. That is what I am trying to wrap myself around now. Yes, I know, it will come to a conclusion and work out somehow, that is what I keep telling myself. But until then...any "TuAmigos" or "TuAmigas" who have this and can offer their 50 cents of thoughts, please by all means do.