The day ive been dreading

I’ve had brittle type 1 for 20 yrs now. Always check myself, count carbs, do insulin, very cautious of being diabetic. Told about 5 years ago I’m lucky to not have complications yet, well being born and diagnosed in the 80’s there were a few new years that did not help. I have found out now that my doctor when I was little (diagnosed at 3) did not believe in insulin pumps when my mom begged, and he said my 9.0 A1C was safe and healthy! Looking back I get angry and want to smack him and say THANK YOU!..i now at 23 have retinopathy in my right eye!

Yup. I sobbed. It brought tears to my eye. He said it is so mild and not an issue. But seriously?! NOT AN ISSUE?! My eyes are my sight to the world. Still I am told that after 20 yrs of being so brittle I am lucky to have this be my only complication, but I am a science major. Health and nutrition/exercise science is what I study, therefore, I am even more torn up. It is recommended 45 mins of exercise 4days/week minimum (no 30 mins/day 3xweek is OLD news people! get moving!). I do min 30 mins 7 days/week and favorite foods are veggies and fruit. So Im very rare, but getting slapped in the face with this retinopathy has really hurt. I do not know what to do else to help improve. I have had 2 doctors quit on me bc im too brittle and everything affects my diabetes and I have zero patterns.

Guess just venting!!! But even though the doctor told me it was beyond mild and microscopic and won’t be an issue, its just the fact that it happened.

I was bedridden for 2 yrs after severing my femur in a car accident. Was a passenger and hit by a drunk driver and pinned me in the car. was given a 50/50 chance of developing AVN, my luck, got it. Reached stage 4 (like cancer, its the last stage) First time in my life I saw my doctor cry to me because he knew I was an avid soccer player and he knew how important it was for me go run again. I fought for my spot with having diabetes. But I was flown to duke U. for emergency surgery, and had my fibula removed and grafted into my hip for blood flow. I was lucky with being at stage 4 that I was able to do this surgery. 5 yrs since surgery, I can walk, i wakeboard when I shouldn’t, but careful…

I guess I felt I survived hell and that I was doing everything right healthyfully (word? prob not!) but somewhere I still just developed retinopathy. As minor as it might be, its huge in my life. I think about my future, my future children, my future husband, my future!!! I have already lost my physical aspect of my life when im a competitive person, I cant lose my site!!!

k. wow. ive vented major. Guess I feel like its a diary to me bc nobody else I know can read this!!!

I understand the retinopathy issue, I’m 29 but mine started developing at 25 after my first pregnancy. Vent away, it sucks to be young and have eye issues, and there are other folks here who understand. I was told at age 26 that I had the eyes of an 80 year old woman - uggggh - can we say “no bedside manner”? I have done the lazer treatments, many of them, and am just not sure what the next step is for me.

At any age this diagnosis hurts, Had a simlar diagosis 10 years ago and finally this year something bigger occcurred, The medical treatment of this has improved immensley over the years. So take heart in that. I know you are a fighter in everything in life based upon your blogs I’ read in the past. With sight live every moment as if it was your last. We are all here at times to vent that’s what makes this such a great site.

Hey flower, your life sounds like my life, it’s like if it weren’t for bad luck we wouldn’t have any. A friend of mine has had op’s for retinopathy about 3 times, and from what I understand, yeah it’s totally worrying and frustrating but I think the laser surgery is not too bad. HTH a bit :o)

Thanks for all the support everyone!!! :slight_smile:

I had all my periphery lasered out 20-some years ago. I have not had any issues with my retinas ever since. I can still see well enough to drive, read and sew. I guess I’m also what you could call a brittle diabetic. I think most diabetics get retinopathy after they’ve had it for more than 20 years. It sucks, but thank God that they have lasers to zap the bad blood vessels. we are here for you, Michelle!

Hey, you are still a beautiful young lady through all that. God bless you.

I hope for the best for you. I can relate to the feeling that I’m always one more dr visit from hearing something I don’t want to hear, any irreversible complication, especially limbs or eyes. It’s hard when there doesn’t seem to be a predictable pattern.