Scared and alone

Scared and feeling alone.

I just received the news that I have Diabetic Retinopathy. I’ve been diagnosed as a diabetic for 25 years now. I’ve been incredibly fortunate in not having many complications since my A1c’s have been higher than 10 for the past 10 years. I knew I was playing with fire, but I’ve always been in denial. So it hit me like a ton of bricks to be told about the retinopathy. It feels like a death sentence for not being compliant. I can’t bury my head in the sand anymore.

I know God was trying to prepare me because several weeks before the news I stumbled across this website. I’ve never known another diabetic. I’ve never known if the ups and downs I’ve gone through were normal or not. I had been depressed and burnt out for years and in frustration one night I Googled – “The worst diabetic ever” and WOW, I wasn’t alone. I’m so grateful for all of you that are involved and contribute to this website. Every day I get on this site, tears stream down my face as I read others comment on their struggles and it’s like my life word for word. You all are so brave and strong to reach out and support each other.

I have to figure out how to actually apply all I know I’m supposed to do. I’ve done this alone for 25 years not knowing another diabetic and not having another diabetic in my family. I thought I was just a failure, a weak person, an angry rebel, not worthy of a good life because I couldn’t be the perfect diabetic.

So being scared and getting out of my comfort zone I’m reaching out for support. It looks like there could be a light at the end of the tunnel. Hoping I can someday be able to see my children get married, and see the faces of my grandchildren.

We're so glad you're here, Jen and you are definitely not alone!

Some of us do get hung up on whether we are "the worst diabetic ever" or "the perfect diabetic". We are neither; we are just people struggling with a complicated condition and doing the best we can. If we feel there is more we can do to make things better than we find out what that is, and one step at a time, make changes. No more, no less. Things will get better! Feel free to ask any questions you may have, lots of people have been there.

glad to have u here and no ur not alone i was so glad to find this site a few years ago i felt like u after all those years of fighting this alone i fould i wasn't the only d out there ppl acutully got where i was comingfrom!!! Anytime u need suppor just come here we're all here to give it. contact me if u want to anytime i've had the diabetic retopany surgery and came out fine it was due to me not caring for myself too but thought i was doing a great job in control. i've been a type 1 for almost 40 years and well help in anyway i can!

Wow Jen. Sorry to hear that news. But glad you have us here to talk to and get help. Just keep asking questions and all of us here will keep helping anyway we can. Even if it is only prayers which I will give gladly.

Good luck and God bless.

Jen - please don't feel alone. I feel like this website has helped me SO MUCH because I too feel alone - don't know anyone else who has diabetes. It is nice to be able to come here and feel "normal". Everyone here is so friendly and helpful. Try not to dwell on the past and focus on the future. You can do it! And we are all here to support you! Just take one day at a time. Sometimes that helps me to not feel as overwhelmed. I will make small goals each day and celebrate those small successes because they lead to larger success.

Again this site and the people are amazing. Thank you all and you will hear from me. For the first time I feel like I can take control. I see how many of you have had a major bump in the road but got right back up and didn’t focus on the negative. The best advice i read I’ve applied to my everyday life was to realize my BS is just a number a tool to understand where before I thought it defined me. So I just wouldn’t take it but that has changed. I’ve gone from testing once a week to testing several times a day. :slight_smile:

So glad to see you here with us. My Tufriends are so warm and caring and helpful. You are not alone. Welcome dear Jen!!

God Bless,

Jen, for me TuD IS the light at the end of the tunnel ;) You're so right : 'my BS is just a number'. It doesn't define you! Take things slowly, one step at a time ;) Stop into the chat room some time and say hi!

hi Jen, we are so glad you've joined the community! I think that discussion here

is so helpful and shows the true spirit of TuDiabetes. thanks for reminding me of it. Now if you want to feel a lot less alone with your retinopathy, please watch this video of our live interview with Dr Wong

Retinopathy is a lot more common in us who've had it more than 20 years than you might think. Dr Wong assured us that if they catch it early enough, blindness rarely is the end result. I had my laser almost 25 years ago, and my retina guy recently told me that as long as I keep my a1c reasonable, he doesn't see me having any more problems because of it.

So, have they scheduled you for laser or anything else? Please let us know, we want to be right there next to you (virtually) if you have to get something like that done. I can also point you to some discussions/groups for whatever procedure you might have to get. let me know if you need anything. I've been here for 5years, and I tell people all the time how much it changed my life.

Hi Jen. I was diagnosed with type 1 in 1988 too, so you're like my diabetes sister. Ups and downs is true in more ways than one for those of us that take insulin. My philosophy is that you shouldn't strive for perfection with diabetes because it will only lead to disappointment. On the other hand, there is always a way to learn and make small improvements. There's a lot of people here with a lot of experience and good ideas on how to do that. And just as important, we understand and we care.

I love it! I always need a diabetic brother makes me feel special. Thanks for the words of encouragment.

Jen - Give yourself credit for reaching out to the TuD community. Our collective experience is comprehensive, and we know how to be genuinely empathetic.

I'm sorry to read about your receiving the retinopathy diagnosis. While I don't share in that challenge, I have received the bad news of a diabetic complication. All you can do is deal with the here and now and try to make things better, not perfect, but better. Over the years I've read that retinopathy treatment has evolved to substantially mitigate the damage that has occurred.

The biggest challenge you face, if you'll forgive my presumption, is to set out on a path, starting today, to get better control of your blood glucose levels. If you do this, you will be able to look back years from now and see this bad news (and it is bad news!) as containing a silver lining; you'll see this as the event that forced you to move in a better health direction.

Don't get bogged down in the whole universe of tactics that people use to control their BGs. Just pick one or two, make an honest effort, learn what you can, and then move on to next one. There are a lot of resources to help you. You can read some books like Pumping Insulin and Think Like a Pancreas or you could hire someone like Gary Scheiner to help coach you about the basic and fine points of insulin therapy.

Don't give up. Get educated. Start to make your diabetes better. T1 diabetes is a complicated disease that can become simpler with some effort and persistence. Good luck, I look forward to reading about your success in the months ahead!

+1!! I was diagnosed Type 1 in 1988 too!! And I had laser surgery for retinopathy about 20 years ago with nothing since. I've been fighting to bring my A1c down too and have made significant progress thanks to the people here. :) Hang in there, Jen! You are definitely not alone, although I know how you feel. I am the only type 1 in my family and to this day have never met another type 1 face to face.

Thanks, Terry. You are right. Thanks for the response.

My situation has been very similar to yours. I was dx'd in '74 and knew plenty of diabetics - my family is full of type one's who died long slow deaths. I never knew any healthy pads until I found this site, 6 years ago. Not only did I find healthy people who'd had it for many years, but also people who were living well with complications.
I was diagnosed with retinopathy 12 years ago. It was very severe and caused one of my retinas to detach. Thankfully, with laser surgery I have 20/20 vision in one eye and 20/40 in the other. I have had no problems since.
There are many members here who have had it and are still doing fine.
Please get the best possible care you can - ask questions and don't assume.
Best of luck to you.

I have been dealing with a retinopathy diagnosis as well. I hadn’t been to the eye doctor in a couple of years so mine went undetected for a while. My retina specialist says we caught it in the nick of time. He has been working to get it under control for about two years. I haven’t given up hope that he will succeed. Do everything your eye doctor says and you should be fine. The procedures aren’t always pleasant but they work. I am living proof of that. If you have any questions about what to expect don’t hesitate to ask. I’ve been through practically everything being done to my eyes.

Hi Jen, my story is similar to the others. When I was diagnosed with retinopathy in 1985 it was a wake-up call for me too. But after laser treatments and surgery, I still have pretty good vision, and minimal changes in the past 25 years. And I know the medical technology has improved greatly since then, so forget about the death sentence. But do keep a little of the fear, and a lot of the motivation to do better.

When I first joined this group, one of the sayings that helped me was 'eat to your meter'. Since you noted you were testing more often, this might be a good 'mantra' for you too. Everyone is so different with their insulin, diet, activity level, stress, etc, but the one thing in common is the use of the meter to see the individual effect ON YOU. Once you see the meter result as just a number, and use the INFORMATION to make different choices, things will improve.

I had no idea how common retinopathy is for diabetics. I feel so much better and I'm taking the time to read more about it and what I can do to help stop the progression. I might start with getting another appointment with a different specialist. The doctor I saw just didn't connect with me. He seem to have the perception that diabetes was a lifestyle choice disease caused by laziness and poor choices. Or..? it could be I wasn't ready to get the diagnosis I got?

"eat to your meter" interesting? Do you have more information on that?

Hi Jen! I was dx'ed in 1984. I used to figure I wouldn't live until 40 however now that I'm 45, I've had to rethink that. I have done lots to make myself healthier but, suddenly, have a bizarro injury (calf strain, hematoma, plus my ankle is black and blue, apparently the bruise is oozing...anything with legs and blood makes me very nervous...) and am seeing complications all over the place. I deal with injuries at work all the time and can totally see that the medical response is "well, here's what we do..." with little sensitivity to my particular needs, concerns or paranoia. It makes it very hard as there aren't doctors who really "specialize" in leg injuries for people with diabetes. It is much easier having somewhere like this to vent at.

re the "eat to your meter" question, I think the plan is to eat, check your meter and use whatever information you get to refine what you're doing. If it's where it's supposed to be, great! If it isn't, think about what you ate, insulin, activity, etc. and make adjustments using what you learned.