Thanks everyone. I realize this path is never one that stands still and is ebbing and flowing. I deal with the fear of losing my sight yet also realize I am so hyper focussed that even my eye drs tell me to try to relax. My endo Dr Wolpert at Joslin is a god send...and has told me one day i will look back and realize he was right when he told me I am destined for a long healthy life.
I think having T1 since 1979 I am not doing so bad, no kidney issues, no neuropathy, ( my dr uses the smallest needle to check my toes and laughs I can feel it even with my callouses) and my A1c is now down from always being in the 8s to the 6s. I have to expect that since that last part of the changes I have made are still recent....past 8 months, that I need to be patient and expect the retinopathy to worsen a bit before it gets better. I still don't have to have laser and my edema has always been minimal and even reversed a bit. The main thing was new hemorages in my peripheral, but damn, I have gone through a lot of changes in the past year and I am sure my body is readusting. I have two retinal specialists at Joslin and one is a very old skool man of few words... whom gave me the news ....he said it ws "slightly more than moderate"... which of course I quietly freaked out over. I contact my other eye dr who had seen me 3 months before at my request because I was noticing cotton wool spots increasing....and at that time it was moderate and he felt I could reverse it a bit,, but it would take some years of constant control, like I am doing now.
He too was sad to hear of the news but suggested there is hope it can and will stabilize, and he said the good news is he is confident even if ultimately I had to have therapy for it, I would do well. So what else can I ask for?
I gave up drinking all together, I gave up coffee, even diet soda because of the aspertame... I eat lower carb and lots of leafy greens and am now trying hard to do cardio every day. I lost 20 pounds and am back to my weight of 165 ( i am 5 foot 9) so my BMI is much better too. I got the A1c down just oldskool without a pump, and a cgm, and did it with 20 blood sugars a day and being dedicated to following though even in the middle of the night. I am proud of that. So now I am on a Dexcom and multiple injections. I might go on the pump but am still scared of the scaring I used to get and the spikes by only having fast acting in my system when I was on the Animas 1200 years ago.
I used to feel invincible...I have not in 12 years but I am also trying to not get so caught up in my depression over what ifs, that I waste my life not living.
Everyone else seems to think I can beat the DR, I guess I need to start believing despite this set back, it might be transitory and I am doing everything in my power to make myself healthy again. My endo said something funny the other day...he said, (after assuring me the changes where likely transitory worsening) that "My rule is that when things work out well you should take credit; when not, blame the diabetes (it's not your fault your pancreas isn't making insulin, right?) and vow to do better tomorrow."
I am going to try to take that to heart.