I’ve also experienced dismissive comments from my family at times. After having my feeling hurt for far too long I began telling my family about my anxieties and then explain why I feel that way and then sprinkle in a little education and then finish the story on an up note. It seems to have helped.
Having this disease for 38 years has placed me on my own little Island which at times can be very lonely.
My story is similar, but diagnosed in 1965. Lasers, vitrectomy and cataracts in 80s,90s. But pretty stable last 25 years.
Biggest change when I switched from single injection Lente, to mdi using NPH + Reg, which may have caused drop in A1C too quickly. Was told that may have accelerated the retina damage.
Then pump with faster novolog/humalog plus CGM, and A1Cs in non-diabetic range, have kept my eyes stable.
I put no value into any of those studies since they all are based on general statistics. And if the study is more than 20 years old itself, I have even less faith in it. We all are unique individuals with unique DNA, genetics, habits, personalities, and live styles.
So do I worry about retinopathy? No. Worrying about anything generally does nothing but reward a person with worse mental, physical, and emotional health. Instead, I plead with everyone to learn about the consequences of this disease and then take action to lead your best, healthiest life.
I have had Type 1 for 56 years with very few complications. I am blessed that with each eye check the doctor says that I have little to no change in my eyes from the year before. I try to eat right, exercise, and remain optimistic.
We all just need to do the best that we can in any and all situations in which we find ourselves. No one has control over your life and your health but you, so be your own best friend to do what you can to lead your best life ever without undo anxiety about something that has not yet happened.
I have been T1D for about 50 years. About 15-18 years in, I developed some proliferative retinopathy in one eye. In that era, I believe, the best available technology was “carpet bombing” the perimeter of the retina with a laser in hopes of salvaging the central portion. As in military carpet bombing, laser carpet bombing introduced collateral damage: degraded night vision, reduced peripheral vision, etc.
Fast forward 35 years, with trouble free exams in my good eye. But, one morning last December, I wake up to a “ speckly background” in my field of view of my good eye. I get an appointment the next day and they begin monthly Eylea treatments. I’ve now had 6 and they are now beginning to space them out to two months … with the hope of getting to once every 6-12 months. At this point, my vision is as good as it was pre-December.
My eye team also tells me that there are 2 or 3 drugs that are likely to be better than Eylea that should get FDA approval this year.
My main message: yes, the prospect of vision degradation or loss IS scary, but just like advances in CGM, closed loop pumps, etc that will help delay retina problems, each year there are newer and better treatment options for if/when those problems develop.
In my view, it is a magical time to have T1D … and things are getting better each year. For those of you younger than my 72 years, you are going to see some amazing advancements in the coming 5, 10, to 25 years!
Stay safe! Enjoy each retinopathy free day! But realize that every month, year, decade that you DON’T have problems will result in better treatment options IF problems develop.
I also had these in my right eye. Thank goodness they worked. Good to know there are more drugs that are likely even better than Eylea coming to market.