For those of you who’ve seen me when I first got onto the forum, you likely noticed how optimistic and cheerful I was when talking on the forum! However, now, nearly a year later (December will be my first anniversary, woohoo!) I’ve noticed that T1, while it doesn’t make me sad, honestly makes me mad, even with food control over it. I do understand it doesn’t make us incapable of anything (except making natural insulin) but it makes me mad when I find things that just don’t make sense or don’t make sense in accordance with modern sciences. T1D is so misunderstood, even by doctors it feels like, but sometimes I’ve learned it’s not always their fault. T1D is so researched and yet we know so little about it. As someone striving to be a Bio-Med engineer, this piques my interest, absolutely, but it’s frustrating as a T1D. I never upon leaving the hospital felt this way until recently. My carb ratio has been changed and I stayed up until 2 AM one night because of a high blood sugar that I didn’t know what to do about. I thought to myself recently, “T1D is a series of life-threatening inconveniences that are relatively easy to avoid most of the time,” and I (as the one who though that) don’t even know how I feel about it. I suppose the reason I feel so mad about it now is because I know what it is now, no amount of reading, not even fiction, can clue a non-diabetic in to the life of a T1D. The reason I feel that way was because whenever I was hospitalized I read a series of poems from kids with T1, and I didn’t really understand how they felt, not yet at least. That being said, I’m sure most of us do know what it’s like NOT having T1, and likely not really caring about it yet unless you knew someone close to you with it, or you just cared a whole lot. Anyway, sorry for the rant, but I’m just having a hard time adjusting, even after this long.
I have never found this for Doctors but it certainly is for pharmacists and devide makers and supply providers. I have been fighting with Walgreens and Kroger to get insulin for 3 months, thankfully I was well stocked. This new July price change has messed up a prescription that has worked for every pharmacy for 2 years. It is all the middle man between the pharmacy and the insurance company. Both are so confused they are frustrated that the billing system will take nothing. I have already filed a complaint with my US Senator.
I was 1 year last May. I feel everything you said. I was so sick with DKA when diagnosed that I was just happy to be alive and know I had insulin to survive.
It’s a crazy ride every day.
I read the book “Diabetes Sucks”
I recommend it and also “Think Like a Pancreas”
The author of Diabetes Sucks is a T1. He described controlling T1 as:
“Managing T1D is like juggling while you’re riding a unicycle on a busy street full of potholes in the middle of a hurricane….”
The entire paragraph describes the challenge perfectly. And he describes it all as exhausting.
These books were helpful to me.
Thinking of you!
@REESEScups07 Welcome Landen to “Diabetes Life”. You reached this point rather quickly after being diagnosed a little shy of 2/3 of a year. Without needing to dig out the Crystal Ball, I can predict that what you are now experiencing is only the first of many, many diabetes revelations in your life - some will be very eye-popping.
Please don’t take me wrong or this as a negative reaction to your posting. From your very first posting several months ago, I’ve been impressed at the positive way you acted after diagnosis and how it activated your “creative juices” and got you working at fiding either a cure or a method for all T1D to live a more comfortable life. Keep thinking, and remain as positive as possible.
After 59 years with T1D (my diaversary just passed!), I have found that I am able to control my blood sugars better than my doctors. This comes with time though. For now, I would say to try what your doctor suggests. Then, if it doesn’t help, you will know this change wasn’t the right one for whatever issue you were having. Let your doctor know this and see what else he/she suggests. For example, if your blood sugars are running low before bed, your doctor might try adjusting your I:C (insulin to carb ) ratio. If it doesn’t help, let your doctor know. He/she may try adjusting your basal rate at or after dinner depending on the time it starts to drop too low. Or, you may find that certain foods are causing your blood sugar to drop sooner after you eat. As you get more experience, you will be able to adjust your settings on your own. For now, it’s trial and error, and I would say that you are better off working with your doctor until you can find what works for you. Keep in mind though, that in some ways it always will be a guessing game, but it does get easier once you know what to do.
You are correct, that a non-diabetic can not really understand what life with diabetes is like. All we can do is try to explain it. I’ve always told those who asked that it’s like a roller coaster. That I try to keep my blood sugar as balanced as I can, but if I take too much insulin my sugar will go low, too little and it will go high, etc. It doesn’t give a full picture, but it at least helps them to understand why my sugars can be high or low at times.
It’s okay to rant!! That’s why we’re all here,to listen to and support eachother. So, don’t worry, you’ve got this!!
T1D 59 years and counting!
PS - I think it’s great that you want to be a Bio-Med Engineer! Someone with T1D has the best chance at creating something that will work well for everyone!
I hear the same words from my daughter every other month, sometimes more. No one can every understand what being a diabetic is like. She has gone through all those emotions the last two years including the anger one. At times I felt like she was greiving what it was like before. If you have every lost someone close to you there are five stages you have to go through emotionally. However it is even harder for a diabetic because you have to try manage your blood sugars, ratio s, insulin …etc 24 hours a day!
I’m not a dibetic but I am a mom.
You have replied to my post and have helped my daughter through your replies and thank you for being here!
@REESEScups07, I’m also new to this disease (6months in) and agree with everything you said. This disease feels like it runs my life lots of times with never ending SWAG on life based decisions, something others, including my wife, do not understand. One thing I try to focus on are the small wins that happen throughout the day. Sometimes I’m successful thinking about those wins, and other times I’m not. Life is not easy with T1D at all.
Your doing great, Don’t forget to pat yourself on the back for it!
I also filed complaints with my Congressional Rep…and both Senators. My insulin began costing me MORE than it did before the price change!!! For an older pharmaceutical that costs approx.$7 a vial to produce…we are all getting ripped off.
Yeah I just had to pay $105 for 3 months supply and the agent at Kroger had the new document in front of them saying no co-pay or deductible for Insulin under part B. The Midwest system Medicare uses is Cigna and it said I owed $105. My Supplement even covers that. My Supplement said I would have to pay it and after it moved through Medicare and Anthem, I could go back to Kroger and ask for a refund.
I’m not sure what you mean by not making sense in accordance with modern sciences, but based upon other parts of your post maybe you meant how it’s not a simple or constant formula to keep blood sugar under control. It’s not actually that it doesn’t make sense, it’s just complicated. Other factors such as cortisol are coming into play. I think the bottom line is that those who are diligent will almost always be okay. Part of that diligence is paying attention to what happens with your blood sugar by trial and error. The error part is okay as long as you have adequate carbs on you in case you overshoot. The ratios prescribed by your doctor are a starting point, but you may find you need less than prescribed if you went for a long run that day, or more than prescribed if you’re under a lot of stress. It’s not the doctor doing anything wrong, it’s just far more complicated than a prescription can address, and they aren’t living your life. Pay attention, and adjust for next time as well as you can when it doesn’t go well. With a pump you can have different profiles for different situations, and while never perfect, your control can be better over time. Other than that, keeping a positive perspective helps, but even really logical people can feel frustrated with it at least sometimes.
Landen @REESEScups07, rather than repeating suggestions already posted, I suggest that you now take the time to reread carefully what Trevor @Tephros posted 3 hours ago. Trevor addressed just about every “issue” you included in your post an hour ago. Also, glucagon is produced by a peptide made by pancreatic alpha cells, not by destroyed beta cells; keep in mind the science of diabetes mellitus, principally that the autoimmune system destroys beta cells an leaves the remaining four cells to actively produce appropriate hormones for body function.
A key take-away from above:
I am 76. I was diagnosed with diabetes at age 70.5 when I was admitted to hospital with a glucose level of more than 1000. The doctors assumed that I was Type 2 because of my age and weight, but I was tested 6 months later, found to be Type 1, and given an insulin pump.
I am a retired lawyer with an undergraduate degree in electrical engineering. I try to read everything I can find about recent discoveries and developments in diabetes. I quickly learned that diabetes is a complicated group of diseases and there is a lot of contradictory information available.
Most seem to think that T1D is an autoimmune disease. Relatively little seems to be known about most autoimmune diseases. Controlling symptoms, rather than cures, seems to be the norm for autoimmune diseases.
All that being said, pursue your goal of becoming a Bio-Med engineer. Perhaps you can help develop further steps to control and perhaps cure T1D. Many people suffer from T1D and even more from T2D. Accordingly, a lot of money is being spent on diabetes research. As a result, (a) you should have job security, and (b) there are likely to be many helpful discoveries during your lifetime.
My maternal grandparents both had diabetes. They used glass syringes and reusable needles which had to be sterilized after every use. Checking glucose levels required a few drops of urine on a test strip and then comparing the color to a color chart. Insulin was produced from animal pancreases, which meant less uniformity than today’s insulin produced by bacteria from human cell lines.
When I get depressed by the amount of time I have to spend worrying about controlling my T1D, I try to remember how vastly superior my situation is to what my grandparents faced. Even during the short six years I have had T1D, I have seen what a vast improvement it was to go from a Medtronic 670G pump with Medtronic sensor to a Tandem t:slim pump with a Dexcom G6 sensor. (The pumps are roughly comparable, but the Dexcom 6 sensor requires so much less babying, that it has made a noticeable change in my life.)
I don’t have much advice for you except to try to keep your carbs fairly low. I find that I spike when I eat a lot of carbs even if I use the right amount of insulin, whereas it is much easier to keep in, or close to, range when I eat lower carb meals.
Finally, remember that before about 1900, you wouldn’t have been worrying about any of this because you would have been dead very shortly after developing T1D.
At age 76, about 10% of my classmates have died, and many more have medical problems much more debilitating that T1D. So, while I may feel sorry for myself when I am depressed, I try to cheer myself up by remembering that things could be a lot worse.
Totally relate to this. I’ve had T1D for a little over three years now and I’m finally not getting so emotional and frustrated w/ my readings, and am better at accepting that things are so complex (as others have noted) that it frequently seems like they don’t make sense, and that’s just the reality.
I also try to keep things in perspective: T1D is horrible, undoubtedly. But unfortunately we live in a world without any shortage of horrible things, each suffered by an individual who is frustrated and suffering, in lots of cases much worse than someone with T1D, especially one who has access to the best available treatments.
I try to remind myself, as another posted mentioned, that in a not-too-far-off era, I’d long be dead.
It’s unfair, it sucks, others don’t understand what we go through, no question. But ditto with the innumerable other forms of suffering people have to go through in their lives.
Sorry to be a downer. After putting things in perspective as much as I can, I then try to remind myself of all that is positive–all the things I can do and enjoy doing and all the support I do have. All anyone can do is their best–by caring so much, you’re well on your way to good T1D management. It’s ok when things aren’t perfect–and they rarely are (at least for me, that’s for sure). I also realized that, as much as T1D can pose various physical health issues, both long and short term, equally if not more important is mental well-being. You’re doing great–if your body isn’t working in “the expected way,” it’s ok. A negative outlook is worse than the physical side effects (or often can be, in my experience). You’ve got this!!
@REESEScups07 I too recently had a rant - well, I actually almost started crying because I was so stressed, felt defeated by this disease and wondered if this was going to be my life for the next 30+ years!. I just celebrated my 2 year anniversary and got diagnosed at age 56 with no prior family history of T1D. I had a very bad few weeks - constantly going low and fast, spending so much time monitoring my BS and then to top it off, my new A1C was exactly the same before going on the Omnipod pump. It got to the point that any time I looked at my watch (my Dexcom feeds to my watch), my friends asked me how my BS was!
At my quarterly endo appointment 2 weeks later, my doctor was great about it - caring, sympathetic, offered some suggestions on changes to my pump settings, etc. That understanding alone made me feel better. She isn’t a diabetic but she does research and trials in addition to seeing patients so she gets it as much as a non-diabetic can. That little, ‘give yourself a break, you are running a marathon not a sprint and focus on 1 thing that is good each day and 1 thing that can be better’ talk helped tremendously. Then, my Diabetic Nurse/Trainer gave me a small change to try in my settings and it worked!
As everyone here said, there is no controlling an uncontrollable disease but we can do as much as we can to manage it. Allow yourself to have a bad day/week/month then focus on how much you have achieved since you have been diagnosed (and you have based on your previous posts.) We all understand and feel what you feel - and you are welcome to vent or rant because we can all relate.
Best of luck and please continue to post/keep up informed on how you are doing.
Tephos: I have to respectfully disagree with your comment, “…those who are diligent will almost always be okay.” I am a T1D of 65 years and in relatively good health. But there are people, myself included, who do all the diligence necessary and sometimes come up short. I think it is best to acknowledge that one might be in a lot of control, but not total control. Staying positive and letting the unfortunate times roll off has helped me tremendously.
I just wanted to say that I also get REALLY frustrated at times, and even though I am extremely careful (I use a kitchen scale to weigh food items whenever I can), there are days when my sugars are really high or low for no apparent reason. This doesn’t happen often, but after breakfast today (I didn’t eat anything different than I usually do), my BS went up to 186. It slowly came down, and has seemed ok for the rest of the day. This happens maybe once a month or so and it almost seems like the insulin didn’t get absorbed.
The lows are more frequent and hard for me to manage, because I am a runner and what works one day for a run might not work the next day! So this morning I ordered the book “Diabetes Sucks” that someone had recommended. Hoping that will help me feel better about the times when things just do not seem to make sense.
I hope you are doing well and managing things as well as can be expected. I have lowered my expectations over the years (in terms of having strict control) which seems to help.