I know I am in the very minority of this. I have peripheral neuropathy, autoatomic neauraphy, heart disease, high blood pressure, kidney disease, 4 heart attacks, 3 strokes, hemorrhage in one eye, gastroparesis, narrowing saliva glands, dry tear ducks. Now with that said. Every time I get even a common cold the mental strain is so hard. I am constantly thinking what do I have to do to make it easier for my body to win this time. If I don’t my body starts to shut down, my heart starts skipping beats sometimes stops completely, I have to consitrate real hard to breath. I have read and read this forum and it seams there is no one comenting on there complications developed from type 1. Personally I think we need to share so there is even less who end up like me. Because I wanted to give up at 21 and just live like I was like everyone around me. Now I am forty looking back and saying I found my love of my life and I shortened our life together because I didn’t think when I was younger.
Hi Dustin. I am so sorry you are dealing with complications from type one. They make your already difficult life dealing with a chronic illness infinitely harder. First of all, you didn’t ask to get this disease, which is time-consuming, constraining and burdensome even without complications. Just do the best you can today, in the present. Self-reflection is good to help you make sense of the past, but self-blame is like putting a stone around your neck and jumping into a lake - it just makes you feel like giving up. I have minimal complications after 36 years with type one, and for that I am both flabbergasted and eternally grateful, because I have put my body through hell. I feel guilty all of the time because managing my diabetes requires so much time and energy and I simply don’t give it enough of either. I should use my bolus wizard more, I should bolus earlier before meals to help prevent high sugars post-meal. I should keep of log of my blood sugars, I should stick to a better daily routine, I shouldn’t overeat, but I do. I wish I didn’t have to think about all of these things every day, but I do. So for today, I wish for grace… to forgive myself for all of the behaviors that made my body suffer, caused my family to worry, and cut short the potential I believe I had without this illness. I don’t know if this helps you at all, but want you to know that you are not alone.
Hi I was diagnosed in January with type one and in august I was diagnosed with celiac disease. I feel like I’m gonna get all the side effects from type one eventually cause so far I got 2 autoimmune diseases in one year and I thought I would never get either of those and even though Iv been eating gluten free for awhile I’m still in pain. I’m just kinda scared rn what’s gonna happen next.
I’ve only had type one for 4 years and I have diabetic kidney disease, Hashimoto’s thyroiditis, celiac’s disease, hypopituitaryisim, IBS, autonomic neuropathy, gastroparesis, Peripheral neuropathy and a few others. I understand your concerns completely and I use herbs to help me because I have also suffered staph infections all over my body in the form of abscesses and my doc refuses to give me an antibiotic. I take garlic a lot. If you want to know more about how I manage let me know and please know you are not alone. I have not had a heart attack or stroke but my risk sits at 90% without treatment for my hypopituitarisim. I have a deep fear of these things. I’m almost always on my phone so again let me know.
Dustin @lisandustin, I don’t know what TypeOneNation Forum you are reading, but during the fifteen [15] years that I have been reading and contributing - I joined type one site under a different user name before this forum became affiliated with JDRF, I have read people share many “complications” endured while living with diabetes - and instead of moaning “why me crap” have shared with others how they have lived through and in many cases conquered the “complication”.
I myself have encountered just about all those things that you have and I’ve shared what I have done to live a full, active, prosperous and productive life now into my seventh [7th] decade of managing MY diabetes. No, I don’t blame diabetes for every complication - I do blame myself for the retinopathy and probably the autonomic neuropathy on MY failure to properly understand diabetes. I have published and shared my story with my eyes since the time in 1966 when my retinopathy was first diagnosed and how I sot treatment and volunteered 53 years ago to undergo experimental eye surgery with a weapon-grade [modified] Ruby LASER. I’ve also shared about a period of total blindness I wallowed through last year cased as a result of the hundreds of eye procedures I endured in BOTH eyes with the early, somewhat crude tools, being developed to provide you with state-of-the-art equipment to "save YOUR eyesight.
Yes, I speak publicly spreading news and information about TypeOne and treatments available. Look about yourself and find a forum where you can speak about diabetes. Recently I was asked to make a presentation, 45 minutes to an hour at the Medical Center about living so productively in spite of diabetes - after two and a half hours of talking and answering the questions of professionals and those affected by diabetes i had to ask for a lunch break. Yes, I worked full-time for over 50 years before retiring and doing volunteer work including a few years as a high-school tutor. I still get on my bike, with a good chunk of dead heart muscle, ride to the gym, do two hours of resistance training, and then ride home at least four days every week.
Justin, get a grip on yourself and stop trying to place the blame for your woes on diabetes or someone else. You have many conditions but they did not come your way just because you have diabetes. You may have seen the comment I recently made to the parent of a recently diagnosed child in which I stated [paraphrased] that I was blessed with diabetes and that has helped me live a better and more rewarding life.
I think that everyone should be open about how they feel cause let’s me honest autoimmune diseases aren’t butterflies and rainbows. Some of us have had it for a long time and learned to deal with ect…but there are also some of us that are really really struggling and need some support. And it’s great that some people have inspiring stories and it’s also great that other people are reaching out for support and to know that they are not struggling alone. Both bring balance to our community and thats why we r here to help each other.
Dennis-Hi. I didn’t take Justin’s message the same way you did. I am the mom of a T1D we are 1.5yrs into dx. My mother, grandmother and several others in my family were T2 (and did not take care of themselves). I think Justin was saying he wanted to get it out there that it is so important to talk about the complications… because he didn’t take it seriously in his twenties, now he is paying the price. My diabetic daughter knows there can be complications … but she is only 11 and doesn’t “get” that if we don’t do what we need to now, by the time she is in her 30’s to 40’s she could have major issues. I think it is awesome that you have led such a good life and you are definitely inspirational. I plan on sharing both your story and Justin’s with my dd - so she can see choices have long lasting effects. Thank you.
I agree with you and that’s how I read it too. Have a 12 year old and it does scare me but I appreciate the honesty!
Thank you for sharing! It doesn’t matter the age or how long we’ve lived with the disease, we all experience peaks and valleys in life and with diabetes. Your post is a help to me, today, at a time when I need to remind myself to take care of myself. I hope you continue to fight and share your strength. Thank you!
Thanks for sharing Dustin. Hopefully parents of young T1D’s and teen T1D’s on this forum will read this and listen. Maybe you can repost and start off with that goal in mind so people do read it. It unfortunately does “start off” sort of how Dennis interpreted it. We all try to do the right things, but as WE (T1D’s) all know, it’s hard! I guess I should consider myself lucky with only T1D, Addison’s, and hyperthyroidism auto-immune disorders. Hopefully the list will stop there. I try to look at them as positives… I’m thin (thanks to T1D and Hyperthroidism) and always very tan (Addison’s). almost every day people ask me if i was on vacation or had my teeth whitened. There are worse things, right? LOL. But, they are all serious diseases and I have to manage them. Anyway, sorry to digress. I think you are right – that we ALL have to realize that what we do TODAY will IMPACT TOMORROW. I really appreciate the insight I gain in this forum to help me make the right decisions today.
Thank you for all who has read this and for the comments. I write this not for simpathy but to share a true story. I want to share my story from the type 1. To many stories are from family members and not from the one going threw it. I heard the other day someone doesn’t want a pump because they don’t want to have to answer the questions. After all that has been done with other disease’s why do our younger generation have to live like we did. Why do they have to live I fear of having to defend there disease because they look healthy on the outside My story is to tell these kids and family members what will happen if you just try to ignore it also the real struggles I went threw to get wear I am. I was 17 the first time I picked up that vial and said I am done with this life. Only 3 years after being diagnosed. The biggest thing I am saying is it is hard it is stressful and even when the room is full you can feel so lonely. I am 40 years old and I still from time to time feel like a alien because I have to defend myself on how sick I really am. You are not alone there are a lot of us help spread the word of type 1 to non type 1they need to learn it is not your grandma’s diabetes. Maybe we can shine the light this is real and kids are still dieing from this disease we need more research to find a cure.