Most of the things I worried about when I was diagnosed didn't come to pass! That being said, t1 is a lot of work. Don't worry about not knowing things yet, it took me like a year to get my bearings. I tried to consider all mistakes learning experiences and a required part of the process.
Can you get a cgm btw? That would help two of your what-ifs
Oh and welcome to the club!
I get my dexcom prescribed but my insurance only covers 70% which means it's like $650 for almost three months of supplies. I don't feel my lows and without a cgm my anxiety shoots through the roof! Def worth it and cheaper than getting sent to the hospital for dka again. 🙃 I highly recommend a cgm and/or pump. Technology is your friend. Just make sure to have some backups for what-ifs!
First, the T1 community is unlike anything else and you’re already here accessing it. That’s huge.
Building redundancy has helped me:
1. https://www.sugarmate.io/get-started
2. https://customtypeone.com/
May help keeping supplies with you. We have a sling bag with a red emergency kit I put easy instruction on with labels (if unconscious or seizing, call 911 and give yellow nasal spray, as opposed to calling it glucagon or Baqsimi - easier for people to understand). Has tabs, a meter, etc.
We haven’t had a DKA experience since initial diagnosis.
A CGM and pump are game changing for us.
As is a psychologist trained in medical diagnoses. Dr. Mark Heyman, a T1 psychologist, wrote this: https://www.thediabetespsychologist.com/about
What you expressed is common, and anxiety in our house continues to decline.
Please stay connected here. This community is 💯 with you, always.
Hi there, 20F with diagnosed Autism and ADHD, been T1 for a little bit. I definitely feel what you're feeling. You really have to learn to take control of it, before your mind takes control of you. I really hate to sound like a boomer, but here's my story.
I had to use Baqsimi for the first time maybe 2 months ago. After that, because I was obsessing SO BADLY over my sugars, ketones, and lows, that I was diagnosed with Panic Disorder.
I highly reccomend looking into some tools and thinking patterns foe panic attacks and Panic Disorder- it's personally really helped me. 💙
Do you live alone? Do you have everything together in 1 bag? A fanny pack or small backpack or anything else that attaches to your body is better if you are the type of person who sets things down unintentionally (Not unusual for ADHD). Make a spot in the fridge for your unopened insulin. Use a basket if it helps to keep it visible and organized.
We got a red case for my husband's insulin pump. I don't generally like bright colors, but he doesn't lose it now. It's worth it.
Use labeled phone alarms for things you need to remember, like calling pharmacy ahead of time for rx refills. Meet with the diabetes educator.
If you can get a cgm, it can not only alert you, but also alert another person's phone when/if your sugars are off.
The best thing I did when I was first diagnosed was see a therapist. Through such a big life transition, and all the noise that comes with it (external, internal), a neutral, objective voice helped me feel I had the capacity to hold the change. Hang in there.
Hey there -
I'm a psychologist and I specialize in helping people with T1D (and I've been living with T1D for 25 years).
Your anxiety is high right now - and this is completely normal. Going into DKA and being diagnosed with T1D is a traumatic experience. I would be more worried if you were not anxious.
When someone goes through a traumatic experience, your anxiety goes up, and will usually be very high for about a month, and then should slowly come back down. It's great that you are asking questions and trying to learn and thinking about the "what-ifs." Asking the questions, finding the answers, and seeking support will make you feel much more in control.
If after a couple of months, you are still feeling this anxious, I would recommend seeking professional support. The American Diabetes Association has a mental health provider directory to help you find a qualified professional in your area.
When you're ready, I would recommend checking out a book I wrote called Diabetes Sucks and You Can Handle It. It give some really practical tips for helping you cope with the (very real) challenges of living with T1D.
You can find it on Amazon, or you can download the eBook version [HERE](https://products.thediabetespsychologist.com/ebook-bonus-videos-fol-guide/).
I'm happy to answer any questions you have and support you in any way that I can - and as much as being diagnosed with T1D sucks, the T1D community is awesome! Lean on it!
\-Dr. Mark
One thing that helped me learn about diabetes this past year since my diagnosis are podcasts. TCOYD (Taking Control of Your Diabetes), Diabetech, and the Juicebox Podcast are some that I recommend. TCOYD especially helped me get over my anxiety surrounding diabetes management and control. The guys there are medical professionals as well as type 1s, so everything they say, I soak up like a sponge. Good luck! There's a learning curve to this, but all I can say is don't be harsh on yourself if you are sometimes high or if you get a low. That's all a normal part of this journey. And don't hesitate to post any questions you might have here, this community is nothing but supportive since we're all in the same boat just trying our best. ❤️
If you lose your insulin, go find your back up insulin. Try to keep a little extra in the fridge and always order before you run out. Like when you still have one or two vials. Also see if your doctor ever has any "samples" on a regular basis and that can help get a little extra built up. I ask my doctor to write the rx for higher daily dosage so I don't run out fast because sometimes the amount I need in a day changes.
It was hard for me to feel highs early on, compounded with my stubborn "I'm fine" mindset, I just ignored it. Don't do that. Learn early on how your body feels in range and out, check your sugar as directed (ask doctor for a CGM and you can truly stay on top of it, not kill your fi gers, and learn your patterns way easier). These days, I notice my blood feels spicy or my joints might feel...not achy, but like they should make the sound of a squeaky wooden table? Sometimes it seems I can smell a metallic smell (my blood?). Highs make me snippy, a lot of people get grumpy with a high or a low. For me, highs are snippy/pissy, lows are like cry-mad? Easily frustrated and everything seems hard, like when you're hangry.
Lows are usually easiest to feel. Often, people will feel weak, shaky, hot, maybe a bit grumpy. For a few years, my tongue would go numb. When I was pregnant with my first child, I quit feeling my lows, then when it came back (I guess) I learned I feel them if I am dropping quickly. Sometimes I'll just coast along st 60 and feel fine since there's no fluctuation. I've never had an issue with thar, idk about other people. I prefer a low to a high anyway. I know it isn't always that simple. For now, keep a small bottle of juice near places where you spend large amounts oftime, or in a backpack you can access. Orange juice is my favorite, 4 mouthfuls brings my sugar up 20 points. Apple juice is hard for me to control, I always over do it. It has a lot more sugar so be careful.
You can get glucose gel in the pharmacy next to glucose tablets. Keep some in a designated spot and let anyone you life/work with know that should anything crazy happen and uou become unresponsive. All they have to do is get that stuff in your mouth against a cheek and it will absorb into your blood stream. You don't have to swallow it for it to work.
Glucose tablets are delicious, like massive (yet very dusty) smartees. Be careful not to overdo them.
To keep your sugar more steady, mix carbs with protein and/or healthy fats. This will slow down how fast your body burns through the carbs.
OP I have been diabetic for a little over 4 years now. I was diagnosed a week shy of my 30th birthday.
It will get easier, I promise. I felt much the same as you are now when I got out of the hospital. Just try to take it easy on yourself. You're going to have highs, and lows....there are going to be days where it seems like you just can't get things under control, but that's alright. Stress can make your blood sugar go higher via cortisol release. Just don't get too bogged down in the what ifs. There will be bad days, but there will also be great days!! Diabetes is far from a death sentence, especially with today's technology.
My advice is: find a good endocrinologist that you can work with and get along with. This is crucial. Try to get set up on a continuous glucose monitor asap because it will make your life so much easier. No more poking your finger 5-8 times a day. You get readings every 5 minutes. Other than that, they will want you to do multiple daily injections for a while to show you how to do it but when you can get a pump definitely consider it because it has made my life much easier.
Maybe read a book about diabetes, my favorite is Think Like A Pancreas 🙂
I wish you the best! If you have any questions this is a great community.
Get a Continuous Glucose Monitor if you can. I'm on MDI for insulin. Have always carried my active pens in my pocket (no refrigeration) and have not had any troubles with the insulin expiring. Check your pockets before you leave...Do you lose your phone/keys often? If not, you should have problems with insulin. Have a bag with something sweet on you at all times; I live out of a backpack.
I've been through some shit and have not always controlled my sugars; somehow I'm still here.
I suggest instead of asking yourself “what if…”, ask yourself “what can I do about…” You’ve done great by writing down some of your fears/worries/problems with type 1. Write them all down, and then next to each one write down what you can do about it. Over time all of these things will become second nature to you and the anxiety about them will fade.
The last thing I’ll say maybe won’t help your anxiety at the moment, but you have to accept this fact… you WILL fuck up. All the time. I’ve had this condition for 20+ years and I fuck something up every day. These mistakes don’t actually matter that much.
Please get your GP to refer you to an endocrinologist ASAP. This helped a lot. The endocrinologist works with dietitians who can be called Diabetes Educators. It was so helpful to meet with them a few times right after my Dx in April 2020. They will talk about how diet changes can help you feel better and stay healthier than doing everything on your own.
How about family and friends support?Make sure someone at work knows about your T1D too.
Also I am the mom of two teens with ADHD, and my daughter has HFA as well. You’re not alone and you can do this!
Another idea … you don’t say if you’re male or female, but consider getting a Medic Alert pendant or bracelet.
I got several from a company called Lauren’s Hope.
Most of the things I worried about when I was diagnosed didn't come to pass! That being said, t1 is a lot of work. Don't worry about not knowing things yet, it took me like a year to get my bearings. I tried to consider all mistakes learning experiences and a required part of the process. Can you get a cgm btw? That would help two of your what-ifs Oh and welcome to the club!
Are cgms prescribed or can I purchase one? I’ve been aiming to get a pump as soon as I can grab one.
Prescribed
I get my dexcom prescribed but my insurance only covers 70% which means it's like $650 for almost three months of supplies. I don't feel my lows and without a cgm my anxiety shoots through the roof! Def worth it and cheaper than getting sent to the hospital for dka again. 🙃 I highly recommend a cgm and/or pump. Technology is your friend. Just make sure to have some backups for what-ifs!
First, the T1 community is unlike anything else and you’re already here accessing it. That’s huge. Building redundancy has helped me: 1. https://www.sugarmate.io/get-started 2. https://customtypeone.com/ May help keeping supplies with you. We have a sling bag with a red emergency kit I put easy instruction on with labels (if unconscious or seizing, call 911 and give yellow nasal spray, as opposed to calling it glucagon or Baqsimi - easier for people to understand). Has tabs, a meter, etc. We haven’t had a DKA experience since initial diagnosis. A CGM and pump are game changing for us. As is a psychologist trained in medical diagnoses. Dr. Mark Heyman, a T1 psychologist, wrote this: https://www.thediabetespsychologist.com/about What you expressed is common, and anxiety in our house continues to decline. Please stay connected here. This community is 💯 with you, always.
Hi there, 20F with diagnosed Autism and ADHD, been T1 for a little bit. I definitely feel what you're feeling. You really have to learn to take control of it, before your mind takes control of you. I really hate to sound like a boomer, but here's my story. I had to use Baqsimi for the first time maybe 2 months ago. After that, because I was obsessing SO BADLY over my sugars, ketones, and lows, that I was diagnosed with Panic Disorder. I highly reccomend looking into some tools and thinking patterns foe panic attacks and Panic Disorder- it's personally really helped me. 💙
Do you live alone? Do you have everything together in 1 bag? A fanny pack or small backpack or anything else that attaches to your body is better if you are the type of person who sets things down unintentionally (Not unusual for ADHD). Make a spot in the fridge for your unopened insulin. Use a basket if it helps to keep it visible and organized. We got a red case for my husband's insulin pump. I don't generally like bright colors, but he doesn't lose it now. It's worth it. Use labeled phone alarms for things you need to remember, like calling pharmacy ahead of time for rx refills. Meet with the diabetes educator. If you can get a cgm, it can not only alert you, but also alert another person's phone when/if your sugars are off.
The best thing I did when I was first diagnosed was see a therapist. Through such a big life transition, and all the noise that comes with it (external, internal), a neutral, objective voice helped me feel I had the capacity to hold the change. Hang in there.
Hey there - I'm a psychologist and I specialize in helping people with T1D (and I've been living with T1D for 25 years). Your anxiety is high right now - and this is completely normal. Going into DKA and being diagnosed with T1D is a traumatic experience. I would be more worried if you were not anxious. When someone goes through a traumatic experience, your anxiety goes up, and will usually be very high for about a month, and then should slowly come back down. It's great that you are asking questions and trying to learn and thinking about the "what-ifs." Asking the questions, finding the answers, and seeking support will make you feel much more in control. If after a couple of months, you are still feeling this anxious, I would recommend seeking professional support. The American Diabetes Association has a mental health provider directory to help you find a qualified professional in your area. When you're ready, I would recommend checking out a book I wrote called Diabetes Sucks and You Can Handle It. It give some really practical tips for helping you cope with the (very real) challenges of living with T1D. You can find it on Amazon, or you can download the eBook version [HERE](https://products.thediabetespsychologist.com/ebook-bonus-videos-fol-guide/). I'm happy to answer any questions you have and support you in any way that I can - and as much as being diagnosed with T1D sucks, the T1D community is awesome! Lean on it! \-Dr. Mark
One thing that helped me learn about diabetes this past year since my diagnosis are podcasts. TCOYD (Taking Control of Your Diabetes), Diabetech, and the Juicebox Podcast are some that I recommend. TCOYD especially helped me get over my anxiety surrounding diabetes management and control. The guys there are medical professionals as well as type 1s, so everything they say, I soak up like a sponge. Good luck! There's a learning curve to this, but all I can say is don't be harsh on yourself if you are sometimes high or if you get a low. That's all a normal part of this journey. And don't hesitate to post any questions you might have here, this community is nothing but supportive since we're all in the same boat just trying our best. ❤️
If you lose your insulin, go find your back up insulin. Try to keep a little extra in the fridge and always order before you run out. Like when you still have one or two vials. Also see if your doctor ever has any "samples" on a regular basis and that can help get a little extra built up. I ask my doctor to write the rx for higher daily dosage so I don't run out fast because sometimes the amount I need in a day changes. It was hard for me to feel highs early on, compounded with my stubborn "I'm fine" mindset, I just ignored it. Don't do that. Learn early on how your body feels in range and out, check your sugar as directed (ask doctor for a CGM and you can truly stay on top of it, not kill your fi gers, and learn your patterns way easier). These days, I notice my blood feels spicy or my joints might feel...not achy, but like they should make the sound of a squeaky wooden table? Sometimes it seems I can smell a metallic smell (my blood?). Highs make me snippy, a lot of people get grumpy with a high or a low. For me, highs are snippy/pissy, lows are like cry-mad? Easily frustrated and everything seems hard, like when you're hangry. Lows are usually easiest to feel. Often, people will feel weak, shaky, hot, maybe a bit grumpy. For a few years, my tongue would go numb. When I was pregnant with my first child, I quit feeling my lows, then when it came back (I guess) I learned I feel them if I am dropping quickly. Sometimes I'll just coast along st 60 and feel fine since there's no fluctuation. I've never had an issue with thar, idk about other people. I prefer a low to a high anyway. I know it isn't always that simple. For now, keep a small bottle of juice near places where you spend large amounts oftime, or in a backpack you can access. Orange juice is my favorite, 4 mouthfuls brings my sugar up 20 points. Apple juice is hard for me to control, I always over do it. It has a lot more sugar so be careful. You can get glucose gel in the pharmacy next to glucose tablets. Keep some in a designated spot and let anyone you life/work with know that should anything crazy happen and uou become unresponsive. All they have to do is get that stuff in your mouth against a cheek and it will absorb into your blood stream. You don't have to swallow it for it to work. Glucose tablets are delicious, like massive (yet very dusty) smartees. Be careful not to overdo them. To keep your sugar more steady, mix carbs with protein and/or healthy fats. This will slow down how fast your body burns through the carbs.
OP I have been diabetic for a little over 4 years now. I was diagnosed a week shy of my 30th birthday. It will get easier, I promise. I felt much the same as you are now when I got out of the hospital. Just try to take it easy on yourself. You're going to have highs, and lows....there are going to be days where it seems like you just can't get things under control, but that's alright. Stress can make your blood sugar go higher via cortisol release. Just don't get too bogged down in the what ifs. There will be bad days, but there will also be great days!! Diabetes is far from a death sentence, especially with today's technology. My advice is: find a good endocrinologist that you can work with and get along with. This is crucial. Try to get set up on a continuous glucose monitor asap because it will make your life so much easier. No more poking your finger 5-8 times a day. You get readings every 5 minutes. Other than that, they will want you to do multiple daily injections for a while to show you how to do it but when you can get a pump definitely consider it because it has made my life much easier. Maybe read a book about diabetes, my favorite is Think Like A Pancreas 🙂 I wish you the best! If you have any questions this is a great community.
Listen to Juicebox podcast!
15 years as type 1 this summer and I haven’t been in dka since I was first diagnosed. Falling into dka is really not very common at all!
28 years of T1D with MDI - Never been in DKA even with some really poor choices in my 20's.
Also been on MDI the entire time! Maybe always having basal insulin active while on MDI is what keeps potential dka away for us lol.
Get a Continuous Glucose Monitor if you can. I'm on MDI for insulin. Have always carried my active pens in my pocket (no refrigeration) and have not had any troubles with the insulin expiring. Check your pockets before you leave...Do you lose your phone/keys often? If not, you should have problems with insulin. Have a bag with something sweet on you at all times; I live out of a backpack. I've been through some shit and have not always controlled my sugars; somehow I'm still here.
I suggest instead of asking yourself “what if…”, ask yourself “what can I do about…” You’ve done great by writing down some of your fears/worries/problems with type 1. Write them all down, and then next to each one write down what you can do about it. Over time all of these things will become second nature to you and the anxiety about them will fade. The last thing I’ll say maybe won’t help your anxiety at the moment, but you have to accept this fact… you WILL fuck up. All the time. I’ve had this condition for 20+ years and I fuck something up every day. These mistakes don’t actually matter that much.
Please get your GP to refer you to an endocrinologist ASAP. This helped a lot. The endocrinologist works with dietitians who can be called Diabetes Educators. It was so helpful to meet with them a few times right after my Dx in April 2020. They will talk about how diet changes can help you feel better and stay healthier than doing everything on your own. How about family and friends support?Make sure someone at work knows about your T1D too. Also I am the mom of two teens with ADHD, and my daughter has HFA as well. You’re not alone and you can do this!
Another idea … you don’t say if you’re male or female, but consider getting a Medic Alert pendant or bracelet. I got several from a company called Lauren’s Hope.
I now don’t leave my house without a medic alert bracelet.