Alright - a different brand of strange rant from me today but I'm wondering if anyone else has embraced the same brand of crazy - and if not - maybe found competing brands...
I always dread my eye appointments. When I was first diagnosed, I was convinced my vision was on borrowed time and through most of my teens made sure I could make it around my home with my eyes closed and get stuff to eat/drink/clean up/ perform basic tasks without looking - mini-blind-man drills... A little (maybe a lot) nuts - but I figured I'd be prepared. Now, 28 years into this illness, I still get anxious going to the eye doc (good A1C's and all) - I still get anxious when I know the appointments are coming and I wonder about the sense (or lack of) in my reaction...
There are plenty of real concerns we all have, "I'm going sledding with my boys, how many times back up the hill before I need to set a temp basal to off?" is rational -it's the other stuff that creeps in and take up the time every now and again. Anybody else spin their wheels with the crazies every once and a while?
(oh - and if it really is just me... that's fine too but maybe ya'll can find a way to let me down easy :) )
I think my eye sight is the least of my worries. My mom and brother both had to get glasses, so when I did I wasn't worried it was because of my diabetes. I actually have an awesome eye doctor so going to see him, whether for check-ups (he has this awesome camera that takes a picture of the back of your eye! I love looking at them haha) or to see if I've got pink eye or if my eye is red and itchy cuz of hayfever or something..I actually feel confident that everything is fine D-wise.
My worries come from the random stomach pains I get, the problems I'm having with my knees and the numb/tingly feeling I seem to be getting way to often in my feet (and sometimes arms/hands). I always in the back of my mind think this is the start, soon I'll be diagnosed with some horrible complication and everyone's gonna blame me for not having a "perfect" A1C(really, my A1C isn't that bad and my control isn't something my endo is too concerned about) then tell me i brought it on myself for being a "bad diabetic". So for that, I usually dread doctor's appointments, whether my family doctor or my endo.
I don't think it's crazy to have certain appointments you dread. I think everyone, even people without D, have that for certain things. My mom dreads the Dentist, to the point that she's been to almost every Dentist in the city because this one or that one was not nice or wasn't gentle when working on her teeth, or whatever.
I don't fear the eye doctor. Though the last time I went, my eye doctor told me that I had no signs of diabetes in my eyes, and she sounded surprised. Now I know that I have been diabetic for over 20 years, but the note of shock did not do much to comfort me...
My fear is the dentist. I don't think it is particularly diabetes related, but I just hate the dentist. I guess I'm like Batts' mom. I dread dentist appointments for days.
I have been type 1 for 65 years and I do not have any diabetes damage in my eyes. I see my opthamologist once each year. My secret is to have a low A1c and to have tight control with almost of my bold sugar tests in a narrow range, with few highs and lows. It is very difficult to maintain that kind of control, but when possible, it will make diabetes related complications much less likely to occur.
I have been type 1 for 65 years and I do not have any diabetes damage in my eyes. I see my opthamologist once each year. My secret is to have a low A1c and to have tight control with almost of my bold sugar tests in a narrow range, with few highs and lows. It is very difficult to maintain that kind of control, but when possible, it will make diabetes related complications much less likely to occur.
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I think it can be more than that. I have never in my whole 16years had a "perfect" A1C, the closest I've gotten is twice..once when I was 7.4 because I was having too many lows and the second time was 7.5 when I was on the pump (I went low 3x a day, then would spike, etc at least 3 times a week)...yet I have zero of the "warning signs" for complications. Whereas I know T1's with "perfect" control, who are waaaay more strict on themselves than I am, have been diabetic for less time than I have and have at least one complication.
I think it's good to strive for control, but you cant say you'll be safe from complications because you have a "perfect" A1C (which doesn't REALLY equal good control. Your levels need to be stable and your A1C can be perfect when you are going up and down like when I was on the pump).
I really don't like it when people say having tight control and a perfect A1C will prevent complications..it often does, but not for everyone. It then makes people who develop complications but did everything they could to have good control feel like they failed and it's all their fault when sometimes, even that tight control couldn't prevent it.
My control is pretty good (A1C's in last 10 years between 4.3 and 5.5 - with only 1 D-related ER visit in that time - and i was sick) - I understand I'm keeping my risks low - I wasn't so much posting about the REALITY of risks and damage but rather the little bits of insanity that creep in (justified or not) that get me being a little (or more) weird and or paranoid...I guess for me I get a little extra dose of crazy with my D... - like i said - i will NOT be completely surprised to learn it's just me, lol
worrying about eyesight is just plain ol crazy. (i've practice getting stuff with my eyes closed since I was 20) even with 2 laser treatments in my "bad" eye, I think I'll eventually see more than I want to see in my lifetime. so let's get serious now: heart disease is a totally different thing. I have an overzealous cardiologist. He knows I have great insurance. He's sent me for at least 25 grand worth of testing. (every test came back normal except c-reactive) but I am totally convinced I am going to die of a heart attack... maybe I AM on his bandwagon, but I swear I worry about it constantly now. gd cardiologist.
"I really don't like it when people say having tight control and a perfect A1C will prevent complications..it often does, but not for everyone. "
Batts I did not say that. I said complications will be LESS likely to occur when A1c's are low. Stable blood sugar is also necessary, like you said. Too many highs and lows can lead to complications, even when the A1c's are very good. The shock caused by going from too high to too low, repeatedly, can cause complications over a long period of time.
I participated in the Joslin Study, where all participants had been type 1 for 50 years or more. The study director told me that there were participants who had taken good care of themselves, but still had some complications. There were others who admitted they had NOT taken good care of themselves, and they did NOT have any complications. These individuals are exceptions to the usually seen results. By and large, the good care, such as having low A1c's and stable control, does greatly reduce the likelihood of complications, but it does not eliminate the possibility.
A-D, I hate the eye dr too. For me, I hate getting my eyes dilated because I feel so out of control when I can't see anything. Also, the thought of ever needing laser eye surgery freaks me out even though my eyes are ok. (I know people on here have had it, and they were fine, but eye stuff grosses me out for whatever reason).
On a different note, my grandfather (now 88) was a pitcher in college and was being scouted by the major leagues. He was then sent to WWII, where he was blinded in the battle of the bulge. After WW2, he returned, finished college, and went on to get his PhD from Columbia (before all those laws like the ADA which protect people with disabilities -- he had to fight and beg to be accepted int the program!). He then had a long career as a college professor before starting a business consulting firm. He consulted all over the world (China, etc) before retiring. He also got married and had 3 kids including my Dad. So, he was blinded, but I think he's been very independent in his life!
BTW, how have you had a1c's of 4.3 without lots of lows? That seems crazy low to me. When I got down to 4.9, my endo freaked out, and I went back on the dexcom to avoid more lows...
Regarding eye complications, I'm pretty sure (if I remember correctly) that my ophthalmologist said that if signs of retinopathy didn't appear within 20 years of diagnosis, the chances of it happening decreased significantly. I guess if you've had diabetes for a long time and worry about complications, don't worry about your eyes! --> actually, I'm taking this back because I just read about retinopathy and glaucoma online, and apparently most people who've had diabetes for more than 30 years have signs of retinopathy. Darn it.
If I ever worry about complications, I tend to think about neuropathy and kidney damage, for whatever reason. However, after reading about eye complications just now, I'm a lot more worried about that, too! I really can't afford to lose significant amounts of my eyesight ever...
Joe - you are awesome - and a great, great man - lunatic or not... - Thanks! :)
Richard- You have such a wealth of experience and so much writing talent, I always appreciate your facts and insights - here too, I'll concede that this post struck me as being a bit antagonistic at the close - I think we all know we can be a little sensitive and show exposed nerves on posts - not sure trading one for another was your best card to play as a face up... That said, very glad to have your input and guidance along the way - much hoping to follow in your footsteps...
Sarah - the 4.3 was lower than was comfortable - but I was still MDI and no CGM... I was in the midst of trying to make an adolescent point (in my late twenties at the time - but... well- sometimes i get hung up on the forks in that Y chromosome) My A1C's post pump have been 4.9-5.5 and really - whether it sounds like it or not- more stable and easier to manage. I love the success story! I wouldn't expect any equal acts of greatness from my corner but can definitely feed on inspiration in that shadow for quite some time - thank you for sharing :)
Katie - leave the worrying to the crazy old men - it's starting to look like we're the best practiced :)
I don't think you're crazy at all! I remember when I was pregnant with my second child my doctor sent me to an opthalmologist. The receptionist (who I now realize was an idiot) told me my doctor must have thought I was beginning to have problems to send me to a specialist. I left the visit without seeing the doctor, and cried all the way home. Well, I found out my doctor just wanted a baseline to compare to in the future. I found a great eye doctor whose sister is T1, so he pays extra attention to diabeties research and issues. He told me that 80% of people with T1 will see some (small) amount of "background leakage" after 10 years, but only a very small percentage of those people will ever even need lazor surgery, which would prevent any type of vision loss. So the bottom line is, it's absolutely unnecessary to ever lose vision to diabetes, and with good control and regular eye exams, its also becoming quite unlikely! I've now had T1 for 25 years, and still don't have background leakage. But... I still do feel nervous when I go to the opthalmologist!
as long as the eye worry thread is still here I though I'd say something more serious
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...but only a very small percentage of those people will ever even need lazor surgery, which would prevent any type of vision loss.
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hi cindy, no that's not completely true. the laser treatment itself damages vision so you will have vision loss even by just needing the treatment. no one knows exactly what causes new blood vessels to grow (retinopathy) peripheral or otherwise. I had none, ZERO, until after 25 years of type 1 diabetes. Thats when approximately 40 non-bleeding aneurisms appeared. A small group of these aneurisms were very close to my optic nerve (peripheral, on disc retinopathy), so me and the doc decided to do preemptive laser treatment to maybe change the progression. as a result of the laser, I have lost some night-vision and a bit of my peripheral vision too. strangely, these chages in my retina occured only after I switched to pump therapy and my control improved in both averages and high-lows. There is some belief that changes in control itself could trigger new vessel growth. Other thoughts include hormonal changes which can co-inside with events but NOBODY has a exact cause-effect for this awful complication.
anyway, I know of many people who needed laser surgery, had bleeding, had vision loss, and there were some that the laser treatment couldn't help at all. YAG coagulative laser treatment is better than nothing, but it's still a barbaric way to prevent bleeding. There are currently no other non-intrusive alternatives.
I have always thought that it doesn't pay to worry, just do the best job you can do, and when stuff comes up ...deal with it. it's an easier thing to say than it is to do =)
I feel a lot of apprehension going to see the eye doctor. It probably comes from the fact that I had a ton of laser surgery done a few years ago and it was pretty painful. Luckily I have gotten under better control (A1C is 5.8 and I'm pregnant) but I am still scared I will have to go through that whole ordeal again. I am going to the Wilmer Institute at Johns Hopkins which is one of the top ranked in the country for retinopathy so I have confidence they know what they're doing. I guess it is like when my dogs go to the vet- they are just there for a check up and nothing bad is going to happen but they remember how bad it was getting fixed a few years ago, so they just have bad memories of the whole place in general!
Joe, I agree. My vision was fine until I got the laser. Now I can't see in the dark and my distance vision is usually completely double vision. I can't even read road signs and glasses don't help. When people stand in front of a window or a bright light, they look like just a dark silhouette. I know I am far better off (I also had a lot done closer to my optic nerve and the YAG...ouch) now than before the surgery, but it sure is strange that my vision is much more impaired than what it used to be.