Great questions Emily. Thanks for getting this thread started. For me, I use complications as a motivational tool. Kidney dialysis is the treatment that pops into to mind first. I met a man that was undergoing this treatment and it was very sad. He would sit in chair for 6 hours 3 times a week. What was even more sad was that he continued to eat what he wanted without any regard for his health. It was as if he was committing slow suicide. So when I am presented with a decision about a particular food or whether I should exercise, I think of this guy and his kidney dialysis. I often tell my friends that if I was given a choice of diseases and illnesses, I would pick diabetes every time because it is a disease that can be managed. For other chronic illnesses, the disease is in control. For diabetes, control can be taken away from the disease if the individual feels empowered to do so. For me, I feel I have the control so the fear of complications is insignificant.
I think of complications but I do not stress.I have had not had the best a1c's over the past year, most induced by lack of attention during these periods of death in my family :my dad last year and my brother's less than a year later. I have not had ONE a1c under 7 since the Spring of last year, which is so unlike me.
I sometimes fear that the symptoms of neuropathy in my back,legs,and feet( pins and needles tingling, mild/moderate pain) which is aggravated by spinal stenosis, myofascial pain syndrome, and bulging nerves my spine, will worsen. They do improve with exercise,stretching, stable blood sugars and use of the doggone Lyrica. But Lyrica has side effects that I do not like, such as double vision and lack of balance. No pain and tingling,but I am not as steady as I like when biking. having to patch my eye so I can drive ( the Jack Sparrow look) is not my grandest fashion statement. I am going to try some homeopathic and keep your blood sugar off that roller-coaster behavioral changes. Most importantly, I pray and stay in God's presence, A LOT.
I do not worry about it. I do not fear blindness, nor kidney or heart disease. No symptoms or recent tests indicate that those would a problem at all, despite the risk factors of long-term type 1.
I also have a probably congenital arterial-venous malformation (AVM) that was discovered 3 years ago. An AVM is a miniscule tangle of blood vessels in my brain that could lead to stroke. Right now I have a 92% chance it will stay as it is, but the risk, like everything else, increases with age. I am aware of this, but not at all paralyzed by fear.
I know now at this stage of life that it does not help to sweat and stress the "what ifs". I can do what I can to minimize the risks, but I live every day to the fullest, even when my back hurts or my feet feel prickly.
I feel love and I try to give love every day. I do not ignore nor forget that I am diabetic. I never do that . I have just learned that living a life of giving and sharing with others helps tremendously. I remember my Aunt Rosa, who at 87 was crippled and bedridden by strokes. But she still worked the newspaper cross words everyday, mailed them in to get a possible prize (The Nashville Tennessean). She sent letters to her relatives and friends; called people on the phone to encourage them.Aunt Rosa was sometimes crusty and stubborn, but she did not bemoan her condition :She just kept on . She died peacefully in her sleep at 94. What a remarkable life.
God Bless,
Brunetta
Type one 45 years
Inspiring...as always, Brunetta. Glad to see you here.
I am glad to be back and thanks, Zoe. You are a great friend to me and to many!!
God Bless
I forgot. I had a low dream the other night. Most are weird and slightly comical while alerting me to "Get up!!", like the Cheerios box did, with fangs in a snarling ,drooling mouth. This past one was scary. I dreamed I was driving down an inclined, curvy bridge, at night while low; and I could not figure out how to steer the car. I was terrified. I woke up immediately, shaky from the nightmare and the hypoglycemia and treated my 48 low right away. I actually appreciate the low alert dreams.
God Bless,
Brunetta
My fear is losing my feet/legs and eyesight, or worse, my hearing. Since I create music, that's probably my worst fear. Because I take landscape photography as a hobby, the eyesight is another. But because I like to walk and hike and do all these things with my legs, that is another fear. I sat in a wake the other night and the funeral yesterday. A very young man...30...a doctor and scientist who was a leading researcher at University of Iowa. A friend of mine. Passed suddenly two weeks ago. Healthy as a horse. Went out for an evening run. Didn't feel good and collapsed. They don't know what made him die. He had his place sprayed for bedbugs the week before, but they don't know if that's what caused it or not. 30. Gone in a heartbeat. I'm 48. You just kind of sit there and stare at the casket and think how sad this is, and then think, how soon will that be me. Has anyone else had this thought? What's going to be the complication that ends up taking me out of this world. We don't know. And the uncertainty of it just sucks. So there you have some of my fears. It's why I follow the teachings of the Buddha. Impermanence. Or the saying form Dune "Fear is the mind killer, it is the little death..." great saying. I try to find solace in just sitting with the fear and letting it go.
It's all good.
=Sigh=
The first question I asked my doctor as soon as I was at out of the stupor of DKA was "how long until I'm blind?" Fortunately, she answered, "Probably never if you take care of yourself." Eyesight is a thing for me because of an eye problem I had at 2 years old. My earliest doctor memories were going to the ophthalmologist & I continued going for many years.
No dreams about complications. I don't think about complications frequently, but when I do it's cold gripping at my heart, a sinking, panicked feeling. How much of my life will this disease steal? What if I can't afford insulin in the future or medical care should I get sick?
My biggest fears are my husband being saddled with a sick me (something I feel intense guilt about) & not being able to care of myself. I couldn't handle being dependent.
this is a great discussion. I appreciate all the replies! I'm a long time type1, w/ retinopathy, doing pretty well.
any type 2s thinking about this? just wondering...
Just make sure you keep your leggies happy!!!! There is something about the long run that's so addictive!!!
High Five Spock!
Dave, DUDE! Wow....thank you for sharing your wisdom. For real.
I think about them every second .. and usually it feels like it's just too late to try to make a change eventhough none of them appeared yet; I keep thinking tht i'll never be able to have kids, my legs are going to be amputated and I'm going to go blind !
Hi everyone. A new poster. I’ve had type one diabetes for almost 25 years, I got it when I was 11 years old and now I’m 35. I’ve been using a insulin pump for the last 12 years. My A-1 C has been in the 6.0 to 7.0 range for the last 15 years. Today I went for a eye exam. This is the first time that The optometrist said I had some hemorages. I almost fainted and I’ve been really scared. Can’t function because I don’t know what it means. My brother had poor control and in 1989 and 1990 he needed vitrectomy. . What the optometrist said specifically was that I had 13-15 spots on bottom right eye and about 5 in my left. They are not broken blood vessels because I have not seen floaters or anything. He also said he said retinalschesis which he said is some minor bulging or pocket of fluid.
He said He just wants to watch and see and see if my control would be better and check me in 10 days. I am totally freaked out really worried I am a man I need some encouragement and maybe some hope from those of you on the board. I scheduled an appointment with a retinal doctor tomorrow because I am so freaked out. I don’t have any relationships with these guys as I’ve always gone to pearle and lens crafters and they’ve said my dilation eyes looked good. Can someone tell me possibly some any positive news or I’ve had diabetes for 25 years and I’m just worried. Thanks!
Some possible encouragement, I had a period about 14 years ago when I had similar problems. It went on for about 4 years and no problems since then. It all started with some neovascularization in both eyes (new blood vessels growing on the retina). I was totally, out-of-my-mind freaked because when I was young I knew a diabetic who had gone blind. My doctor is a diabetic retina specialist. Back then the initial treatment was laser. The theory was by using the laser to kill cells it would reduce the demand for oxygen and hence reduce the new blood vessels (at least that's what I remember). Eventually, I developed leakers. Some cleared naturally and some did not. So I had a total of 3 vitrectomies. The first two under total anesthesia and the last one local. The last one was because a membrane had formed on one retina and was creating tension.
After the last victrectomy, the retinas stabilized. A few years later I noticed my night vision was getting worse. When I mentioned this to my retina guy his response was "of course you have cataracts, they are sometimes associated with the trauma of the surgery." When I asked him why he had not mentioned it he said that everyone gets cataracts if they live long enough and the time to do something about them is when the patient(me) mentions them. I had plastic lenses implanted in a very quick painless procedure and my vision has been a stable 20/20, 20/30 since.
I am 63 and have been diabetic for 42 years. This episode was my worst diabetic phobia and I made it through. Truthfully, the biggest issues were my panic. I still shiver remembering how scared I was. I was very fortunate that my endo referred me to the diabetes retina specialist. He works on these problems all the time and I benefitted from his experience.
You can get through this, there are more treatment options now and taking the slow, conservative path is not a bad idea.
Thanks. Just scared.
Have you ever had dreams about diabetes complications? What are they like?
I've had a few. I dreamt I had lost feeling in my feet.
When you think of complications which do you think of first/most? Why?
Probably retinopathy and kidney failure. They would be difficult to deal with them, since I don't have insurance.
How often do diabetes complications enter your mind? Do you try not to think about them? Or maybe find yourself thinking of them obsessively?
Not that often. I certainly try not to dwell on them.
When you think about diabetes complications do you feel fear? Anger? Shame? Guilt? Determination? Sadness? Gratitude? Other things...?
Probably a little bit of everything, except shame and guilt. I think I've always done the best I could with what I've known. I think I've been turning things around in the last couple of years. I certainly feel gratitude for TuD, and sadness for those of us that are haven't been as lucky.
Hey I am thinking of this as a mother looking at her 8 yo t1 daughter and worrying. We have not discussed what could happen. I don't want to scare her but I am seeing the problems that she could end up with in my t2 husband who ignored his sugar for way too many years and now that he finally has it under control it is too late. He is 46 and had a heart stint put in about six years ago and started dialysis this January. Yes it scares me. It is always in the back of my mind. I just won't let it run our lives. I won't stop my daughter from doing anything and make sure that she knows that as long as she takes her medicine and checks her sugar and exercises and eats right she can have a long and happy life. How that all plays out remains to be seen but worrying about the future in the present seems to ruin the suprises. (good and bad) Then you miss out on the things that you could be doing while you were worrying about what was going to happen. I worry enough for her and when she starts this journey as an adult I can just hope that she is aware enough that she doesn't ignore her illness. As long as she takes care of herself she will live a long and happy life. And if there comes a time when she has an issue I will be there for her just as I am now and if I am gone I just hope that she has someone in her life that loves her enough to help her through whatever happens. I just keep telling her every day she can handle this and hope I am right.
I have the same fear, lots. Nothing frightens more then the scenario you described. It's become more real since my mother has an aide living with her 24/7. She's not incapcitated or demented, but needs help after surgery. Been through a bunch of aides & each one is awful. All are licensed & trained. A nightmare. Scares me to think of depending on an aide, or even worse nursing home staff.
i am worry about my kidneys most, it is very painful to have transplant , my kidneys are not working properly after 20 years of diabetes.
Yeah, we type 2s think about this.