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If you have experienced complications related to T1D, which of these words most accurately describe the effect of complications on your quality of life?
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52yrs T1 since age 4. Aging with T1 is progressive negative due to vital organs break down. The decades before cgms and synthetic insulin catch up now. My retinas! Glaucoma due to the vitrectomies. Then the dry eye disease due to drops used for glaucoma! Only maintaining what I have. No cure. No reversing damage. But- I lived a long and very athletic life as T1. M T1 motivated me to look for careers that forced me to be physically active. And I got rewarded with new technologies with devices and creation of vitreoctemies! High BGs permanently destroy organs. MDIs permanently scar tissue. Lows permanently destroy brain cells. Living in balance every moment of every day is extremely difficult thus stressful thus can raise BGs- realizing this too late is risking your life. Overwhelmed with fear of how I will grow older- total loss of eyesight? Heart problems? Kidneys? Limbs? Living in a resthome due to 0 independence? Isolated and alone. In fear health insurance will stop covering what is keeping me healthy today or will cover future needs in time to save me
Yeah, Elle, I still worry about the same. BUT seek refuge in Buddhism. Worrying about the future distracts us from living in the PRESENT.
Being a focus group of one, itās easy to thrive on the smell of oneās own sulfur and portray life as a sadistic lottery. š”
Evolution of the human species has placed it in an eternally awkward position and it has done so with messianic intensity rendering the human body a craven weakling and submitting it to abject degradation. Then pile on retinopathy, neuropathy, and nephropathy. Nice job, mother nature. š
But I choose not to do that. It may be periwinkle-hued optimism, but you white-knuckle through whatever you have to do only to discover, hey, life aināt so bad. 70 years of T1D since age 4 can be dealt with and even enjoyed. ā(āā”ā)
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I always enjoy your comments. Thank you.
Painful would be the word I would have used. I have had to have four surgeries due to complications from the diabetes and recovery was long and painful.
Iām very fortunate not to have any of the complications after almost 50 years of insulin use.
Tiny bit of retinopathy. Continuing struggle with endocrinologist, ophthalmologist and primary care, they say my A1c goal less than 5.6 are too strident. Nothing about this condition interferes with any part of my life anymore than taking care of my teeth and moisturizing my skin.
5.6 is a great target if you’re not having wild swings in your blood glucose levels.
After over 60 years as T1 I have some neuropathy in feet. Any other problems I have are NOT caused by diabetes but who knows? Things like depression mainly caused by lower testosterone levels (which maybe I could increase by going to Longevity Medical Clinic ($5000 per year but cheaper if you avoid all the other supplement pills & cosmetic shit) & maybe dysfunctional family during Cold War. My Impending dementia in my family is maternal genetic. But frequent hypoglycemic episodes probably did not help. Was it neuropathy or Extra Strength Tylenol that caused my loss of balance & some hearing loss? I still can walk briskly but not ride bike. Maybe I could afford an electric trike to handle Seattle hills? Maybe a chopped Harley trike? No doubt genetics have contributed to my long life + aerobics, weight-lifting, yoga, low carb diet.
Life-altering/motivation. I lost over 80% of my vision in one eye around the age of 30 after believing that I was doing ok with my diabetes. I made drastic changes, had corrective surgery, and I now have my sight restored for more than 15 years, and I intend to keep it that way!
Bearable: hypothyroidism is bearable due to only a slight inconvenience of taking an additional medication and following up with labs.
Motivating: insulin resistance has caused me to start eating better for weight loss, better control, and less insulin usage.
T1 for 64 years, I know I am fortunate to have no complications to date. Pumps and CGMs make life much easier today.
When my ophthalomoloist said he noticed the beginnings of diabetic retinopathy in the late 1980’s and I began to feel numbness in my toes around the same time, it was a wake-up call for me to tighten my diabetes control. By doing that I have been able to forestall and delay the progression of both of these conditions. More than 20 years later, by keeping my A1c in the low 6’s, and by beginning to use an insulin pump (2011) and CGM (2019), I have been successful it preventing the progression of these conditions and do not require any medication or treatment for them. I’ve begun to use the extended bolus feature of my pump because I suspect incipient gastroparesis. and the extended bolus helps me to avoid lows. Fear of losing my eyesight is a HUGE motivator, especially given the history of macular degeneration in my family…a double whammy for a person with diabetes. After 45 years as a Type 1, I am grateful for the tools and technology available to us to help us better manage our diabetes. But, with diabetes, there are no guarantees.
I was informed I was diabetic when I awakened from a 5 day hyperglycemic coma (bg 1500+). When I was found my temp was 82 and resperations were 6. The resultant organ damage required removal of my gall bladder, 50% of my colon (permanent colostomy) and 2 chunks of small intestine. Pancreatic atrophy, splenic infarction, various strictures and multiple jp drains in my abdomen for 6 months due to abcesses were the cherry on top. So yeah, it’s had an impact. Woops, forgot to mention the stroke. LMAO! I just read the previous sentence!
I have had significant joint damage over the years, resulting from inflammation of surrounding tissue (trigger fingers, carpal tunnel syndrome, and frozen shoulders) and when those things are going on, it is consuming. But since taking tighter control of my blood sugars (with a target of 90% in range, and target A1C of 5.0%), I have been unaffected by complications.
Is carpal tunnel related to T1D?
I would add “stressful” and/or “anxiety provoking” to the list, because the complication (retinopathy) is not very serious, I had one surgery in 2009 to fix the issue and haven’t had a problem since… but it’s absolutely hanging over my head that I might have more eye issues in the near future. So I worry a lot about it, which affects my mental health greatly.
But according to my HMO, they don’t exist.
I well remember life before t1. After diagnoses I determined to maintain independence and handle self care with excellence. Diet change and realizing I shouldnāt run/bicycle without letting someone know. Great. Complications or rather fear of complications, has motivated me to time consuming BG monitoring and everything else attached to having t1. Evaluating my autoimmune damages(pancreas and thyroid) and trying to discern normal aging processes (WMD, osteoporosis, arthritis)it gets complicated. Quality of life? Health awareness. Aforementioned independence? Ha! In my world Iām the fixer, caregiver, strong one. But t1 has humbled me. A complication and a blessing to have/need a few people who can help when that rare low BG befuddlement interferes with finding my own glucose!! Not all t1ās have that.
For me, motivating. I had an awful diet before LADA T1D diagnosis. I am much healthier today with it than I wouldāve been without the diagnosis. Plus, I had irritable bowel before and a change in my diet completely cured that. Quite frankly, THAT disease was life-altering. Iām happy to be rid of that. Iām grateful for insulin. I worry about growing old. No children. A spouse older. But, all-in-all, still feel luckier than most.
Some stress attached because T1D is life changing. Experiencing some other health issues that are related to it. The insulin pump is great along with cgm….. Also a lot to learn and get used to. But all in all thankful for the advances that have been made. Also very thankful for my doc and his team!
Life-altering. Diabetic retinopathy hit and was misdiagnosed during the three years I was working on my Master of Fine Arts thesis show. The loss of visual clarity, color distortion and loss of sight in my left eye definitely changed my long term plans.
I selected Other because the only complication Iāve had so far was frozen shoulder after surgery for a torn rotator cuff. At the time and through the 18 months it took to recover, it was life altering, negative. Consuming, burdensome, and debilitating. Now that itās over, though all is well again, Iām very fortunate
Frustrating!
Life-Impacting
Most of my large joints have frozen or become very stiff and painful.
My endocrinologist has had this happen to several of his patients. Started with frozen shoulders about 10 years ago and then gradually effected all of my larger joints. Shoulders, hips, knees, elbows and now my hands and feet.
Frustrating
I learned that you need to have your answers decided with multiple choice. I had burdensome chosen and was thinking if there were any other aspects and the time ran out. That was decided to be my only answer by this website.
Gastroparesis / and or irritable bowel is a problem that I have that has been attributed to T1D. I’m not sure if I had it before T1D or not, but it has progressed and makes eating and digesting not so easy anymore. It also plays big on my BG with some foods at different times.
Progressive neuropathic joints in my hands and feet has had an effect on how I do things. Had to give up an active semi-professional career as a dance performer due to neuropathic joint changes in my feet affecting my balance and flexibility. But hey, I studied and performed, and later taught and choreographed all kinds of dance styles from early childhood – even before being with “juvenile” diabetes nosed at age 8 – until age 55. I am now 67 and enjoying retirement doing meaningful activities and things that give me pleasure and joy even with neuropathic joints and cardiomyopathy (regulated with a pacemaker) secondary to a long life with T1D. Had early retinopathy treated with lasers back in 1982 and my eyes have been quiet and stable and ever since.
Very, very frustrating. I have worked hard from day one to maintain a healthy lifestyle with a steady meal plan and lots of aerobic exercise (running). However, my T1D and messed up autoimmune system have challenged me throughout my life. I have severe calcium deposits on both of my shoulders, that a doctor told me was common with diabetics. I have had two surgeries, and still live in significant pain every day. Also gastroparesis, irritable bowel. Celiac disease. And, a host of other related maladies. Now, my eyes are giving me problems. A1c at 6.1, usually below 6. Go figure.
Irritating.
I have recently been diagnosed with Stage 3 kidney disease and am now seeing a nephrologist. Changes to my meds, increased hydration and decreased sodium in my diet.
I answered “Deteriorative”. A year ago with 54 yrs T1D, I could have answered “N/A”, but I’ve suddenly developed a diabetic “snowflake” cataract which will deteriorate my quality of life until I have surgery. It is more irritating I can’t see perfectly than interfering with quality of life at this point.