Newly diagnosed at 30


(Carolyn87) #1

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.


(kabowers) #2

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!!

Amanda


(joe) #3

hi @Carolyn87 and hi @kabowers

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!

-Joe


(sneathbupp) #4

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.


(cmanton) #5

Hi there

I know it’s overwhelming at first. Like, seriously overwhelming. I was diagnosed 2 years ago at age 28. So I really do understand. And yeah, I cried in both the grocery store and the pharmacy. But I swear it gets better. There is so much to process at first, but over time you will get it.

When you’re ready, I’d recommend checking out the Beyond Type 1 site at https://beyondtype1.org/
They post a lot about active lifestyles with type 1, and have lots of perspectives from athletes. You’re going to have to re-learn some things, but with good advice from your doctor and a lot of reading, it’s completely possible for you to live the active life you want.

As for test strips, there have been some good suggestions here. I just wanted to add in that One Drop is another company that has a service that offers a subscription for unlimited test strips. You have to buy their meter (I think it’s like $80), but then you can subscribe and get UNLIMITED strips for $39.95/month or a whole YEAR of unlimited strips for $400. My friend started using this program a month ago and he really likes it so far. So while it’s still frustrating, you do have options. The type 1 community is a great resource for figuring out how to get good deals! Here is the One Drop site: https://start.onedrop.today/collections/test-strips-subscription-plans

And finally, as for being scared about not feeling extreme highs and lows…I was in a very similar boat. I lived alone at diagnosis, and was very afraid. I highly recommend you check in to getting a continuous glucose monitor (CGM). One of the most common brands (and the one I have) is Dexcom. I was a little resistant at first, but it has given me and my family so much peace of mind and made a huge difference for my ability to not hit those extreme highs and lows. While I originally hated the idea of having a device on me at all times, it really doesn’t bother me. It’s fairly small, and I stick it on the back of my arm where it’s barely noticeable. And it sends me my blood glucose reading to my phone every 5 minutes. It’s amazing. It may be kind of expensive, depending on your insurance…but it is definitely worth asking your doctor about.

I wish you well. I know it’s hard to believe in this moment, but you will conquer this. You will make it through. Give yourself some grace as you get there.


(cmanton) #6

Hi there

I know it’s overwhelming at first. Like, seriously overwhelming. I was diagnosed 2 years ago at age 28. So I really do understand. And yeah, I cried in both the grocery store and the pharmacy. But I swear it gets better. There is so much to process at first, but over time you will get it.

When you’re ready, I’d recommend checking out the Beyond Type 1 site at https://beyondtype1.org/
They post a lot about active lifestyles with type 1, and have lots of perspectives from athletes. You’re going to have to re-learn some things, but with good advice from your doctor and a lot of reading, it’s completely possible for you to live the active life you want.

As for test strips, there have been some good suggestions here. I just wanted to add in that One Drop is another company that has a service that offers a subscription for unlimited test strips. You have to buy their meter (I think it’s like $80), but then you can subscribe and get UNLIMITED strips for $39.95/month or a whole YEAR of unlimited strips for $400. My friend started using this program a month ago and he really likes it so far. So while it’s still frustrating, you do have options. The type 1 community is a great resource for figuring out how to get good deals! Here is the One Drop site: https://start.onedrop.today/collections/test-strips-subscription-plans

And finally, as for being scared about not feeling extreme highs and lows…I was in a very similar boat. I lived alone at diagnosis, and was very afraid. I highly recommend you check in to getting a continuous glucose monitor (CGM). One of the most common brands (and the one I have) is Dexcom. I was a little resistant at first, but it has given me and my family so much peace of mind and made a huge difference for my ability to not hit those extreme highs and lows. While I originally hated the idea of having a device on me at all times, it really doesn’t bother me. It’s fairly small, and I stick it on the back of my arm where it’s barely noticeable. And it sends me my blood glucose reading to my phone every 5 minutes. It’s amazing. It may be kind of expensive, depending on your insurance…but it is definitely worth asking your doctor about.

I wish you well. I know it’s hard to believe in this moment, but you will conquer this. You will make it through. Give yourself some grace as you get there.


(nbfrantz) #7

Hi Carolyn,

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,

Nicole


(Carolyn87) #8

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.


(nbfrantz) #9

Hi Carolyn,

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!


(Jason Taormino) #10

Hi Carolyn,

I swim three days a week with a cgm. I stopped trying to get readings while swimming as they were intermittent and about 15 minutes behind my actual sugar level. Happy to help.

Jason


(Carolyn87) #11

My a1c was 5.5 at the follow up check. No dexcom yet, but paperwork is in progress. I’m feeling good- did a slow marathon last weekend with a lot of finger pricks (Pikes Peak). My fitness is coming back and I’m feeling fine.


(BookwormNerd13) #12

Hey Carolyn! I was diagnosed several years ago, but I still remember exactly how terrifying it was. The only thing that will really make it easier is time. You’ll gain plenty of knowledge simply by trying things again and again.
Speaking from an athlete’s point of view: I play tennis 6 days a week, and I’ve found that exercise makes my blood sugar drop quite rapidly. It also tends to affect my numbers for several hours after I finish playing (I’ll finish playing tennis at 5:30 pm and wake up low at midnight). The funny thing, though, is that dehydration actually makes bg go up, so sometimes I’ll finish a match and be at 300. It’s all a balancing act, and frankly, I’m still working out the best way to manage it. So far I’ve found that a bottle of Gatorade has exactly the right amount of carbs to keep me in range while I’m on the court, while still keeping me hydrated. I’ll let you know if I learn any other good tips. Best of luck!!


(danifb) #13

Hi Carolyn and all of you. My name is Daniel, father of 2-year old Samuel, just diagnosed with T1D on 9/11 this year. Needless to say how tough is digesting the news, specially when you and your kid have been really healthy… i didn’t see this coming. Ironic thought about my somewhat close connection with T1D: I have been riding the ODRAM (One Day Ride Across Michigan), a yearly 147-mile bike trek on the rural Michigan roads. This is a fundraiser for JDRF, and even riding it for more than 3 years, I didn’t have a clue of T1D really meant… currently adjusting to the new normal, learning a lot, looking forward to meet others like me. Finding the courage to fight this battle, no way I’m falling apart or letting my son down.


(Kathryn) #15

Hey Carolyn!
Welcome to our family! I’ve had diabetes since I was four and a half and I can remember how much it was for me. Of course, my parents did a lot more than I did, but I am now completely independent. Two years ago I got an insulin pump and that changed my life for the better. It is a lot of money though, and you still have to buy supplies. Training your dog is an awesome solution and if trained well, he’ll do great! When I get high, or low bloodsugar I can usually feel it coming on. I don’t know if it’s the same for you, but I get really thirsty, have to pee a lot, and sometimes get headaches or nausea depending on how high it gets. When I’m low, I’m usually really shaky and weak, and really hungry. That also gives me headaches sometimes. It helps (and I don’t know if you already do this) to get supplies for the month and save your money otherwise. If you need to, get some jobs on the side to help balance out the prices. The bruising on your stomach can be an issue but try arms, legs and even backside for shots. They keep scar tissue away that could become permanent. The callouses o your fingertips are unavoidable if you’re like me. Just remember to test a lot and change the fingers you use to test.
Good Luck!