I hear you!
After 30 years with T1, I just got a vitreous hemorrhage. Scary, not fun, but we each live with our own challenges and for the moment, this is mine. I didn’t ASK for diabetes. I’ve been getting injections (Eyelea) (wasn’t that supposed to PREVENT this from happening? ) Also I had lasers about ten years ago that I thought would have taken care of the potential bleeders.
I’ve got CGM and I’m on a pump, A1C most recently 6.5. Time in range 80%. I work pretty damn hard to keep it this way. But who knows, maybe I’d be completely blind by now if not for the effort?
My own VH has resulted in very cloudy right eye, like looking through frosted glass. Makes reading (and driving) hard. Hope it clears up soon. . .
And best of luck to you!
I hear you!
FIRST OFF. @Marilyn6 … I know that I am not a Type 1… But it still scares me that what you are going through now, no matter what I do to take care of myself and my 'betes, that I am going to have complications.
I know you said that “people diagnosed in the 80s and 90s have a much better chance of living long lives without much in the way of complications.”
I hope you meant that for both Type 1’s and Type 2… By what I quoted you saying, I am TRYING to think that way. But its hard. I worry about what is ahead of me in the future. I know I should only be thinking about the present, but I just can’t help wonder what is in store for me.
Yes, Chris 1 and 2’s. If they take care of themselves like you are, then they should live healthy long lives. I think that you are doing a remarkable job, Chris. I doubt that my son, who is about your age and is also bipolar would be able to do what you are doing!
Keep up with the good control, and try not to worry.
- Blushing *
Why thank you
Hello Marilyn, I too am a Type 1 diagnosed at age 7. Unfortunately until I got the Tandem x2 pump my A1c’s were in the 7’s-8’s. They are now in the 5’s but not without having complications; open heart bypass at age 45, retinopathy which seemed to come on suddenly at age 64, had laser in both eyes but my left eye needed a vitrectomy surgery. I now have 20/20 in both eyes. I have Stage 3b kidney disease but that has stabilized. I have neuropathy in my feet but it hasn’t prevented me from walking everyday and in fact seems to have gotten better.
Like you, I had very little education on treating diabetes when I was young and as a teenager. I knew I could eat candy if my blood sugar got low and I learned if I have some low blood sugars I could have a better A1c than if I didn’t have any so 3 months before my endocrinologist appointment I’d be sure to have some lows! What crazy thinking! I paid the price for that. Now the doctor looks to see how much I am “in range” which is nearly always 92-98%. I believe for certain we are still here and living longer due to the incredible technology out there.
I think just the fact that we are diabetics is what causes the complications. It has certainly caused me to walk a different path but it has also increased my faith incredibly so that is the “good” that is coming out of having diabetes for 63 years.
Stay strong and know you are not walking this path alone!
Hi Marilyn, my mom was told when I was diagnosed at age 7 (will be 70 in October) that if I lived to be 45, I’d be very fortunate! So life expectancy was not real high back in the day.
So sorry Jane, that you have had various complications, but very glad that you have made it though to 70 next month and with good vision!
How did you discover that you have kidney disease, if I may ask? Did it show up on blood tests? My numbers have always been good, but who knows what the future may hold.
I don’t use a pump, but I appreciate my CGM. It is certainly easier to stay in range with one. Your range is very good.
Thanks for reaching out. Wishing you all the best.
You should ask Dr Bernstein on his youtube channel because it doesn’t seem right. Your A1C, diet, bloodwork means that you shouldn’t have these problems. I strive to have your #s, but if it’s all for nothing, what’s the point!
I think Dr. Bernstein might say that I should have been following his low carb diet, which I did follow for 11 yrs, until I couldn’t anymore because it wasn’t good for my particular body.
Turning to a low fat plant based diet made my day to day living much better. More energy, only 1 migraine in the last 5 yrs, and no passing out do to low blood pressure. I had many complex migraines, and I passed out fairly often when only eating 30 carbs daily. I also received heart stents because of high LDL when following the Bernstein woe. The only good I got out of it was a very low A1c and probably a better TIR result. Mine are still excellent but they were easier to achieve while following Bernstein.
I imagine that if I didn’t take such good care of myself, I would have had more complications much earlier in my life.
Taking really good care of yourself is well worth it.
I hope by today’s date, your vision has gotten better. I know the feelings you are experiencing. Your post hit me right in the gut when I read it today. I was on my computer reading emails yesterday when all of a sudden some of the words started disappearing. I must say I got panicky. Things in my lower right eye were fluttering and swimmy. However, no pain whatsoever. I thought maybe I had over used my eyes since I have read 5 books on my Kindle in two weeks. When I looked in my closeup makeup mirror it looked like someone had socked me in the eye in the corner of it. It seems ok today, but still wonder if I should call my ophthalmologist. Just saw him the end of April, with no problems.
You take care of yourself and eat a healthy diet because it gives you the best chance of a life with limited complications.
Nothing can prevent them totally. The folks we see who truly haven’t taken care to eat well, control glucose, exercise: they are often the ones who develop peripheral vascular disease and amputations, renal failure, heart disease, and retinopathy at an accelerated rate and early in life.
Patty, yes, see your ophthalmologist. I had just seen mine in April too. My eye showed nothing when I looked in the mirror, but a normal looking eye. Don’t take anything to do with your eyes casually or you might regret it.
My eye is slowly clearing and should be fine in a couple more weeks.
O Marilyn. So sorry you are going through this. Reading through all these responses I noticed you just really being open and honest about how you were feeling and then too, responses from others with the same authentic quality. Thank goodness for the support within these groups.
Though I agree with others who wondered what your health would be without your great care, that doesn’t take the grief and frustration of loss and worry away when things change.
We are all troopers. Hugs to you.
My doctor discovered my kidney’s spilling protein from a blood test and urine test. I saw a nephrologist for 2 years. I was diagnosed with Chronic Kidney Disease, III(moderate). He recommended checking my blood pressure at home, restrict salt and potassium intake, avoid nephrotoxins including NSAIDs and contrast agents.
I lost 25 pounds, my BP went from 146/58 to 118/54. After 2 years he said it wasn’t necessary for me to see him anymore.
So glad that you are maintaining your kidney health, Jane22. Great news about the decrease in your blood pressure.
I see that your diastolic blood pressure is very low like mine is. My cardiologist tells me it is nothing to worry about, but I find it odd that it is so low. I have to take BP meds to keep my systolic reading lower even though my weight is good and I exercise an hour a day.
When I ate 30 carbs daily, I didn’t need BP meds, but my blood pressure would often drop way too low, and I would pass out. I can’t win!
You are winning!!
I don’t post much, but I do read a lot of posts. After reading this post of yours and also your post about taking plant sterols to lower cholesterol, something clicked that I had read about plant sterols. I actually have some in my pantry now. I bought them to address my high LDL, but did not take them for long because of things I read. The article linked below from Science Direct:
Says that they have found an association between retinal vasculature and plant sterols. It is a long and technical article, but here is the gist of it:
“To summarize, we have shown that an increase in cholesterol-standardized serum campesterol concentrations observed during long-term consumption of plant sterol ester enriched functional foods correlates with increase in retinal venular diameter. The functional consequences of the increase in retinal venular diameter in terms of affecting health demands further study, although the observed increase of 2.3 μm is certainly relevant when placed in perspective to associations found in for example metabolic syndrome subjects and smokers.”
It’s certainly not conclusive that plant sterols could cause retinopathy, but I thought you might want to be aware of this possible connection. The other thing I read about plant sterols is that they definitely lower cholesterol, but do not necessarily reduce cardiovascular risks. See link for article:
I don’t mean to add stress to all the things we diabetics need to balance, but perhaps this information will help you sort out some of the mystery of your retinopathy.
Yes we know the drill. Diagnosed in 1965 at 10 years old. I do have some complications but manage it. I was talking to a Retina Specialist about a different issue and was told there have been so many improvements with retinopathy treatments and laser surgery in recent years that patients keep their vision. Best Wishes.
GoldFinch, thank you for sending this link to me. This is quite disturbing. I will try to get my cardiologist to look at the study and tell me what he thinks. I will also bring it to the attention of my ophthalmologist.
I am tempted to just quit taking the supplement, but then my LDL will go back up and I already have heart stents. My cardiologist is the person who suggested that that I try Cholestoff since I can’t take statins.
Again, thanks very much for thinking of me and calling this to my attention.
I hope I haven’t added to your worries. You are obviously doing everything you can to have the best health outcomes. I pay attention to your posts because I have been on a keto diet for almost 5 years and have similar cholesterol levels as you when you were following Bernstein’s diet. I don’t want to have to get stents. I had a cardiac calcium scan about 6 months after starting keto. My calcium score was zero then. I plan on getting another scan done next year. If my score is still zero, I will not worry about my high cholesterol, but if it goes up, I will reevaluate my diet and try to get my cholesterol down. I read a lot about cholesterol and have come to the conclusion that even the experts still don’t really understand cholesterol and the cause of cardiovascular disease. Some say LDL is not the thing to measure. That you need to know the particle size of the cholesterol because it’s only small particles that lodge in the arterial wall. Others think that it is only oxidized LDL particles that cause damage and it’s PUFA oils that are more easily oxidized than saturated fats. It’s hard to know what to believe, since the recommendations keep changing. Is high HDL protective? Should we be looking at the HDL/LDL ratio? It’s all very confusing and different health professionals tell me different things. For the time being, I’m keeping on keto and cautiously optimistic that my calcium score will stay low. I may be singing a different tune next year and following in your tracks going vegetarian. It will be good for you to discuss with your doctors, as there might be more recent studies that show there is nothing to be concerned about with regard to plant sterols.