Newly diagnosed at 30
So I spent all of Memorial Day weekend in the hospital with ketoacidosis, A1C was 12.5. I’m a runner, just returning from a torn calf muscle (now I know why I tore it-high blood sugar cramps). This was the absolute last thing I expected. I went to urgent care Friday afternoon with what I thought was a UTI, they check my blood sugar and send me to the hospital. I felt fine. I thought I was going to pick up some antibiotics then go for a run. I’m so overwhelmed.
I haven’t cried for 3.5 years (when my last boyfriend and I broke up) until this. I will soon be known as that crazy girl that always cries at the grocery store/pharmacy. I’m 3 for 3 at the store since I got out of the hospital. Its a combination of food that I now have to give myself extra (or larger) shots to eat or just not eat and the super pricy test strips at the pharmacy that insurance will only pay for about a third of what I feel I absolutely need at a minimum. I feel ok with sugar at 40 and 599 in ketoacidosis and the effect of exercise especially hasn’t been predictable. That scares me and I’m terrified of not realizing I’m super low (bad immediately) or super high (less scary immediately but the long term consequences terrify me). I live alone with my border collie (new project – train him as an alert dog) and will not change that.
At least I just have to work harder/longer hours to earn that money and I have the capacity to do so. However there are so many things on which I’d rather spend that time and money. Physically, I feel better than ever except my fingertips and bruising on my stomach (I’m a skinny runner type, not much fat, never has been), but emotionally, I’ll get there. Stress baking and using that math major to calculate carbs/cookie and compare glycemic index with the insulin curve. This is so scary. At least its not tax season (I’m a CPA) but all the costs scare me (already spent like $400 on extra test strips because insurance pays for 4/day and I’ve been going through at least a dozen between lots of testing on heavy training days and screwing up test strips with the “not enough blood” error). And the potential of passing out on the trails which is why I test so much. I already have 4 meters just because I’ve been asking for samples/extras.
Hi Carolyn – I don’t have a whole lot of advice yet because we also spent our Memorial Day weekend in the ER with my 7-year old while he received his diagnosis for the first time (blood sugar somewhere above 600). It still seems very scary and life-altering, as you know! My son has autism too, and while he’s pretty high-functioning, we are always surprised when he is low (like…very low…today he was 29 and said he felt “fine”). Exercise really throws him off and he loves to play in the pool for hours so we are still trying to figure out how many carbs he needs to counteract the exercise. He’s also in his honeymoon period so his body is still making a lot of insulin.
Anyway, it’s a lot to take in and I just wanted to let you know you’re not alone! FYI, my sister in law (not a blood relative to my son) was diagnosed at 37 out of the blue. She was a very fit tennis player at the time – still is!). And we feel your pain about wasting test strips and lancets!!
please give yourself a break and go easy. 2 weeks ago you were immortal and it will take time to understand and rewire your brain to deal with this. everyone goes through a huge loss and then denial, anger, bargaining, etc. No one gets a pass and it is a process. I am glad you’re crying, (not actually, I mean it’s a good thing) if you bury it now it will continue to haunt you forever.
HEALTHY EATING AND FAMILY HISTORY have almost no bearing on a diagnosis of T1d. it’s not something you did or didn’t do. I hope you believe me.
so okay I’ve had this forever. it doesn’t get easier but it does get more routine. you will both be experts by the end of the year. for me, I think about today, I do the best I can today, and I am human and no one is perfect. Add that to the fact that a perfect blood sugar is like throwing a quarter into a shot glass 100 feet away and you get the idea.
strips. I think walmart has cheap strips. there’s a new company called “Livongo” here is the website https://welcome.livongo.com/family?utm_source=corp_site&utm_medium=web#/ I am pretty sure it’s unlimited strips for $50 a month. beats the heck outa your 4 hundy in extra strips. I use them because it’s offered through my employer but I think they allow individuals to sign up.
I don’t know what else to offer. I can’t say it’s all flowers and rainbows but I am no genius and if I can do it, so can you. please let us know how you guys are doing and if you need support.
good luck to you both!
Amazon sells cheap strips. I use True Metric but they have many brands. I get them for 18 dollars for 100 strips vs pharmacy for 35 dollars for 50 strips (My insurance only pays 20 percent so this is much cheaper). I am newly diagnosed too. Thanksgiving time for me. I was overwhelmed at first, hard to get carb/insulin right at first. But it will fall into place. Breathe, be patient. Ask any questions you need.
I feel you. I was just diagnosed at 22 (shortly after finishing my collegiate swimming career). Quite the shock for me as well.
Have you tried having your endocrinologist contact the insurance company about a higher number of strips per day as a medical necessity? Have you talked with your insurance company about any cheaper options? My first co-pay for test strips was over 150$ for a 3 month supply, but I switched to a value brand (Kroger) and to mail-order so now my co-pay is $5. In fact, mail order is way more convenient for all my supplies and saves me a ton of money on insulin, pen needles, etc.)
Rather than testing so many times, see if you could get your endo to write you a prescription for a CGM (continuous glucose monitor, I personally love the Dexcom G5) so you can see the trends and test less frequently. My co-pay is about 100$ for a month supply, but I wear them for twice as long as they are recommended for, so I stretch that to 2 months. They also will alert you when you are high or low (which makes living alone less scary).
We will get through this,
Thanks Nicole. I know I’m not the only one. Its so good to hear that.
I swam in high school, then focussed on triathlons in college (took a 10 year break from any swim training), and now I’m back to swimming masters very casually (2-3h/week vs 15). Can you swim with a cgm? I can’t get in to see an endo until the end of July.
I feel I would definitely benefit from a cgm. The last 2 evenings I’ve dropped to 30 in the late evening, no idea why (maybe higher intensity exercise than normal??), and felt fine. That really scares me and is a big part of why I’ve been testing so much… I did nothing differently but maybe my body is adjusting and I need to adjust my food ratio in the evenings. The though of needles under my skin with something stuck to me all the time really squicks me out but that’s less scary than suddenly not realizing I’m low and passing out without warning.
Sorry for the slow reply. Yes, you can swim with a CGM, but the receiver (which shows the blood glucose readings) needs to be kept somewhere dry.
Hope your endo appointment went well and that you are having a good summer!