I am 25 years old. I have been a type 1 diabetic for 14 years this month.
I have my appointment today to assess the damage done by retinopathy. I haven’t gone a day in the last year without flashes and bursts and circles in my vision.
I haven’t felt my toes in 5 years, either.
I’ve basically given up any hope of being able to have children and have resigned to the fact that I am most likely going to die young, soon and without ever having the pleasure of saying that I learned to live with this horrible disease.
Yes, it sounds like you are greatly struggling, but that you have made some progress in lowering your A1C. Way to go! There is a saying, “Don’t give up before the miracle”. I feel sad to hear you say you are resigned to dying young. I hope that is just a down moment and you posted here to get some support and encouragement. I agree with Tom that a good team is very important when you are having a hard time controlling blood sugars and a therapist would be great for the emotional aspects of the journey. Poco a poco…little by little…you can get those numbers down and then truly have the pleasure of saying you learned to live with diabetes, and then it perhaps won’t be a horrible disease at all. Hang in there, girl.
You know that diabetes s*cks. It is not fair. It robs you of a life that others have. But in your heart you know that life is what you make of it. Don’t let anyone or anything “take” things away from you. You may not live forever and you may not have perfect health, but you certainly can do things with your life, be happy and contribute to make this world a better place. I do hope you can get better control of your diabetes and address some of your complications, but what I really hope for is that you can find some happiness and purpose in your life. If you have that, then all the rest of that diabetes stuff is secondary.
I felt really inspired by Randy Pausch’s “Last Lecture” (http://www.thelastlecture.com/), maybe it will help you.
Pulling that BG into a nice comfy range is still possible. I truly believe your experiences have been awful ones, looking at your blog. Cheer up! I know eyes can get better under a strict regimen. You can feel your toes again, too. People who have worked with low carb diets have gotten rid of the swings - and Dr. Bernstein is a good example - whose complications regressed under a strict regimen. Have you read his book?
I’m sure it’s tough to feel low when you’re high - which is what you wrote earlier. It’s hard to pull BG down when the feeling of low makes you fear going into seizures. I go through it every time I’m given cortisone in my knee. A Dexcom really helped me, not for 3 days, but for a year. I learned how to pull the BG down while looking at what was happening so I didn’t fear going into a low, despite the feelings that accompanied getting my averages down.
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How about trying a CGM and a pump? Get an endo and CDE you can work with. It’s still worth it.
I don’t know what to say 
I just have lots of digital hugs for you <3 I hope things take a turn for the better (congrats on lowering your A1C so much though!)
Virtue.
No one will give me a pump. I’ve tried. They tell me my bloodsugars are too high.
Hang in there! It is tough, I won’t lie. I have days when I feel like you, more lazer for retinopathy, etc. But the good days make it worth it, you have to believe you can do it with baby steps. There are peple on here who complain when they spike to 149, I would kill to be at 149 before a meal! Just focus on it little by little, and write me anytime you need encouragement or a virtual shoulder to cry on.
Oh dahrlin.’ I’d like share some affirmations with you. You may think them rather odd, goofy, whatever. Bear with me. “I am strong; I am pretty; I am capable.” Add other positive verses on your own - each day for a few days. Pause.
I am not a medical professional or academician of any kind. However, I know a few things after manipulating diabetes for the past fifty years. Here goes:
Second, get more exercise. I don’t care if all you can do is walk down the hall, or to the end of a driveway, DO IT! The circulation in your nerves and nerve endings has not been encouraged = neuropathy. Start with baby steps. And, as you know, food ingestion (aka: Diet) is an important factor. Intaking of fibrous items helps keep your insides clean (free of toxins).
Okay, tha’t enough for now.
I’ve recently noticed headaches with lows. The other night I was sitting on the couch and grabbed my head and said, What’s with the headache!?" Checked and it was 28.
It’s an challenge & not a fun one. Yep, it truly sucks.
The bad thing about diabetes is that it’s about self-care. The good thing about diabetes is that it’s about self-care. You’ve gotten your A1c down. Great work! You can get it down more without serious lows. I hear you on lows. I despise them & feel awful for hours after they’ve passed.
You really can be more in control, if you want to. Some neuropathies heal given more normal BG, especially since you’re young.
I second Leo’s suggestion about checking out Dr. Bernstein’s Diabetes Solution. Diabetes felt hopeless to me until I read his book. It changed my life. Lowering carbs & therefore taking less insulin greatly reduced the roller coaster. Can’t say that I never go high or low (wish I could), but the swings are less frequent & less dramatic.
I have never understood why people with high numbers are told they can’t get a pump. If you are diligent, a pump will give you better control with exact doses and basal rates once they are adjusted. THere is no guessing with insulin amounts, and because the pump is always attached to you, you can always bolus before eating. I think you are making great progress to have lowered your A1C and I think that you will be able to continue to lower it . I hope you have a good team working with you. Most specifically a good diabetic nurse educator who can adjust your rates and give you some fine tuning to get back into better control . Keep plugging along… one day at a time…good luck… Nancy
Actually, the standards for who can get the pump are “wacked.” Insurance coverage essentially dictates who gets a pump. My insurance (aetna http://www.aetna.com/cpb/medical/data/100_199/0161.html) says you can have one if you are T1 or have an absolute c-peptide 110% below the lower limit of normal. You also have to have to have demonstrated proper MDI for six months, testing and injecting with proper frequency. Namely, you have to have demonstrated you are properly employing an intensive insulin regime. But then, on the other hand you also have to demonstrate that you are having “problems” controlling your blood sugar, fasting > 200 mg/dl, hypos, etc. So you have to have “bad” control.
The upshot, you get pump covered if you are a good/bad diabetic. If you are a good/good diabetic forget it. If you are a bad/bad diabetic forget it. And if you are T2, you’ll only get one when you have fully blown out your pancreas, which perhaps explains why many patients accept sulfonylurea treatment.
In either case, pumps are not granted based on whether they are appropriate for achieving a diabetic outcome, they are doled out through a wacked set of rules. Specifically, patients that “mess up” an intensive insulin regime are selected to move on to a pump which requires even more complexity in management. Hardly the population who can most readily utilize the more detailed control available in a pump.
Sorry for the rant. I recently had the nurse from Aetna cheerily tell me how great a pump is and I chewed her out and it just sorta spilled over.
I’m so exhausted over pump politics.
I used to feel exactly the same and now, 56 years later, I am still around. It is not the fact that you will die at an early age, it is the fact that you will be dragged through years of complications and it is painful. It is very important to understand that if you get your numbers in line now, then the later years will be easier to get through. There is absolutely no reason, with today’s technology that you cannot see a “low” happening or be able to see a “high” and correct it before the damage is done. My only regret is that the technology was not available for many of my years, the education was not there. I am very diligent now and accept the complications that I have and do my best to stop them getting any worse.
You can have a wonderful, fullfilling life with all that Diabetes can offer.
Sheila
I don’t want to exhaust you. I want to help you get control of your diabetes and put a smile on your face. How can I help you do that?