Hi all. I'm here to see if I can get any wisdom from those of you who have had diabetes longer than me. I was diagnosed about 2 months ago and I've gathered from other posts that people here are all over the spectrum as far as how long they've had it. It may be helpful to a lot of others like myself who are just starting out to hear from some of you veterans out there. More specifically; Is there anything you wish you had or had known up front that would've helped you in the long haul either with management or with your health? Is there anything you wish you had done or started doing right away that would've helped your health and management or prevented any complications?
To be clear, this isn't the thread to say "I wish I had never gotten this" or bemoan your diabetic state. So please, keep things positive here! Hoping to find some great insight and learn from others!
The closest thing would be my maternal grandfather who had Idiopathic thrombocytopenic purpura (ITP). For those not familiar it's a low platelet count in the blood and it's thought to be cause by the immune system destroying those platelets. Aside from that there's autoimmune disease history going back to great grandparents and out to 3rd cousins. I haven't investigate further back or out on the family tree.
I am not a veteran per se as I have had this three years now. But in some ways it feels like an eternity and like I've always had it. I think the thing that I have started doing in the last year that I find so helpful is really adhering to a low carb diet. But in doing so, I have found it really important to make myself healthy low carb treats like muffins and cookies so I don't have a feeling of being deprived. I think if you can eat in a way where it is healthful and you feel satisfied and not deprived, you will be successful. I have to say I actually really love my "diet." It is loaded with real food. I think one of the keys to maintaining good Bg's is to know exactly what you are consuming. It keeps the surprise factor to a minimum.
I have always exercised. But I can't stress the importance of it enough with those who have diabetes. It just helps so many things that not doing something physical that you enjoy would be a mistake IMO.
I guess you have to find the things that are most important to you. For me it is twofold. First, I don't try to keep my blood sugars in range to be "perfect." I do it so I can feel good. Secondly, though complications can occur no matter what, I like to think at least I am doing my part in trying to avoid them. It offers me some peace and like I have just a tiny bit of control with this thing.
Great question, awg! After 25 years with Type 1, these are my wishes for do-overs:
(1) I wish I could have gotten a grip faster emotionally after diagnosis and skipped the denial stage in my younger years. The sooner you can accept the disease, the better you can get a handle on treatment. Good treatment is key. Even though you think you're invincible when you're young...you're not!
(2) I wish I had tried cgm and the OmniPod sooner instead of being so stubborn and staying with MDI for so long. The cgm and pump make it so much easier to see what's going on and then treat it quickly and more accurately.
(3) I wish I had the availability of resources for educational opportunities that people in other parts of the country do. In the South, there aren't as many top notch clinics and research facilities for diabetes (particularly Type 1).
(4) I wish I had tried low carbing sooner to flatten out spikes and feel better.
(5) Age gives you the wisdom to see how short and precious life really is. Take full advantage of it and set your priorities accordingly.
I also have to add a few things I feel like I did right and am grateful for:
(1) At the advice of the doctor who delivered my daughter, I found an endo I could work with and have been with him for 25 years. A responsive medical team is important.
(2) I have always kept on a regular schedule with all my docs for regular checkups. As I've aged, I've expanded the regular doc appointment list to endo, internist (primary care), retina specialist (eyes), podiatrist (feet), periodontist (gums), cardiologist (heart/vascular), gyno (female), ENT (sinus/ears), gastro (digestive).
I've managed to avoid complications thus far and credit regular doc visits in part. I'd rather catch it early and be able to treat than procastinate and prolong damage.
(3) I've always taken my meds regularly as I'm supposed to. I work with people with high blood pressure who have had strokes and heart attacks because they just haven't take their prescribed blood pressure meds.
Great to hear some things you feel you did right too! If anyone else has things they feel they did correctly right away then I'd love to hear those too. Just starting out with all this, I feel like there's no such thing as too much info and life lessons learned from others.
Everything changes and will continue to change. I was older (34) when diagnosed and had many life long responsibility's.
Just married for the second time.
Two small children (3 and 5 years old) who's mother ran out on them.
Just started a new business.
My second wife is still with me. (27 years)
My kids finished school, got marred and have their own family's now.
I have grandchildren, what a blessing.
4 different business.
I didn't have much time to rest during my first 20 years with diabetes.
I have never thought Diabetes was part big part of my legacy.
Just manage your life and your BG the best you can...then you will have no regrets
when the end comes...;-)
T1 diagnosed in 1988 at the age of 2. I wish I had known how much better you feel (mentally and physically) when you keep your blood sugars in order. I was just used to feeling awful when I was out of control and didn't know how much better it was possible to feel with better sugars. I'm just now getting in control and I've never felt better! Good luck to you - and learn as much as you can. I would recommend reading Cheating Destiny: Living with Diabetes. It will give you so much insight!
Afterthought... My kidneys have leaked protein for years but I never took my blood pressure pill because I didn't feel the effects. Now I wish I would have just swallowed that little pill every night. It really was no big deal, and might have saved me a little more kidney funtion in the long run!
Thanks for the insight SamiiiG. About the kidney function, how does one know if their kidney function is normal? Is there a specific test I should ask for on my next visit? I've had regular blood work done and my mother and sister (they are a nurse and PA respectively, though neither for an Endo) looked at the results. I remember my mom saying that the blood work that indicated kidney function looked fine/normal, but can't remember which result that was. Is that all I should have to go on?
Since I ate a healthy vegetarian diet and worked out a ton in the gym, I just assumed I was healthy. I never ate sugar or drank soda or fruit juice. So I was shocked when I was dx'd. I wished I knew how sensitive I was to carbs and starte to test my bg a lot earlier before so much damage was done.
Renal/kidney function is *normally* evaluated on routine bloodwork...
Also, a urinalysis can reveal whether or not protein is finding it's way into your urine.. I had a minimal amount at diagnosis, and that has since resolved.
Just say that you are concerned about your kidney function, and ask him to show you the bloodwork results. Ask any questions you have.
Yeah, a routine urinalysis looking specifically at microalbumin/creatinine ratio is the most routine and sensitive test, giving your the earliest indicattion of abnormal kindy function. It is, however, very senstitive to changes that have nothing to do with kidney function though. So, if you exercise, especially strenuously, within 24 hours of doing the test, you may get abnormal results for example.
I wish that someone would have told me about the impact of alcohol. How your liver cleans your system out first, then give you a little bit of glycogon to wake up the body - BUT if you have been drinking the clean up takes longer. And being severely hung over I couldn't keep food down. When you have a low and a seizure and you can't think, eat or keep any food down, that plus the low makes for a very close to death experience.
Some alcohols will lower your blood sugar, others raise it, others just make you drunk. I had some scary episodes and then figured it out. diet coke and Rye = OK, beer = OK, Champagne = HIGH BS, Coolers/bottled mixes = HIGH BS, Diet coolers = OK
I try to keep testing through the night. If I'm at a club I test in the bathroom stall or I go out to the smoking section for a little bit to test (I don't smoke but there usually aren't a ton of people out there).
So since I didn't know about this and how serious it can get I'm glad to have the chance to pass this information along. Thanks for posting this. Great idea.
Amy T1 28years (34 years old now)