Advice for a newbie


(Megan) #1

Hi, my name is megan and i’m 15 years old. i was diagnosed with T1D almost three weeks ago. it’s been a very hard time for me and i find myself feeling depressed and alone more and more often. i was a very social and outgoing person and now i feel so unlike myself. i have great friends and family who are very kind and supportive, but i still feel like none of them understand because none of them have T1D. i’m still very new at this so any advice on how to handle this physically and emotionally or any advice on social events and just trying to figure all this out would very much be appreciated. i’m also very curious about insulin pumps and how they feel and if people like them. my doctor had told me a little about pumps but not much. anyway, any advice or tips would be great. thank you :slight_smile:


(BookwormNerd13) #2

Hi Megan! I’m Abby; I’m also 15 and I’ve had T1D since I was 7.
First of all, welcome to the world of T1D! (Probably the most ironic sentence you’ll ever hear because there’s nothing “welcoming” about being diagnosed with this condition…) I’m glad you’re ok and I’m glad you found TypeOneNation. It’s a great place to share your feelings and ask questions.
Second: What you’re feeling is completely normal. I went through a period like that too, and frankly, I still feel that way sometimes. It can be hard to feel like you don’t “fit in” with everyone else. Right now, your condition feels like a big part of your life; eventually, it’ll become so routine that you’ll almost forget about it. Once that happens, it will get easier and easier to feel “normal”.
If you haven’t already, tell your friends about your condition. Their support will help immensely. I also recommend learning how to do insulin yourself rather than having your parents help you… obviously you’ll still need their help for carb counting, etc, but independence will help you feel more in control of your condition.
I can’t really speak for insulin pumps because I don’t have one… the idea of wearing a pump just doesn’t appeal to me. It’s really a personal choice; I do know some people who wear them and love them. I’m probably getting a CGM soon so hopefully that’ll make things easier. I’ll let you know what I think once I get it :slight_smile:
Please email me at abigaelparrish13@gmail.com if you have any questions, if you want an email pal :heart_eyes: or if you want to rant (yeah, that’ll happen). I’m always here if you want to talk! :two_hearts:
–Abby


(Megan) #3

Hi abby! thank you so much for your feedback and your help. it feels good to know i’m not alone in this:)


(Mary) #4

Hi Megan. I was 10 years old when I was diagnosed and have now been a Diabetic for 46 years. When I originally came home from the hospital and was feeling down, my parents cheerfully told me to go out and play, there was nothing wrong with me, I just had to watch what I ate and take a few shots a day. Back then we did not have glucometers to test, you tested your urine. I remember when I would pretend to test and not do it! Boy was that a mistake. I ended up punished, not because I didn’t test, but because I lied. Again my parents reminded me there was nothing wrong with me that some inconveniences that I had to follow. What I am saying is that my parents gave me the best advice ever. I am living life to my fullest. I have had some ups and downs but I have gotten through them all and believe I am stronger for them. I wish you the best and always remember, you will get through it. Listen to This Is My Fight Song,


(Dennis J. Dacey, PWD) #5

Yes Mary @marscanlon ,
I hear you and I hear your parents. Great advice, you, your parents and I “preach” the same advice that although diabetes is an inconvenience and needs our attention that there isn’t anything we can’t do. We sing a similar theme song, and the “I can do anything” is the way I’ve lived my life while living with diabetes for 60 years. Yes, I’ve made mistakes, many, but I’ve learned from them.

Ummmmmmmmmmm, not testing your urine - that sounds familiar but in retrospect just that “infraction” probably wasn’t that serious because all those urine tests [I used clinitest] just told us history - a guess where our BG was several hours before the test. Now, the lie is another matter!

Yes Mary, keep telling everything, especially newly diagnosed and caregivers of newly diagnosed to just concentrate on living a full, active and productive life and manage diabetes to fit and enable a good life.


(Hollie) #6

I feel you! I’m still expecting to be told they’ve made a mistake and I’m fine! All just feels very weird and surreal so far but you just need to keep positive and look after yourself! Hopefully it will all become routine for us


(agne) #7

@meganhjermstad Hey Megan,
I’m nearly 18 and been living with Diabetes for 8 years now. I know exactly how you feel- lost and frusturated. Unfortunately, it will take some time till you feel ok with diabetes, but remember that you are not the only one :smiley:

Of course that your family and friends cannot understand Diabetes because they don’t have this illness, so talking with people who do and asking them advice could really help you these days.

I have an insulin pump for almost 8 years and I couldn’t imagine my life without it- it became my “best friend” :smile: It is much easier to control blood sugar and needless to say that you avoid constant insulin injections with it :sunny:

If you have anymore questions about T1D you can always ask me- I would be glad to help. Good luck!


(Megan) #8

Thank you so much! :slight_smile:


(Joe) #9

Megan very sorry to hear about the type 1 . My daughter just got diagnosed 4 weeks ago and as a parent and a father I’m a complete mess . I find myself depressed and reading about this disease all day long . I can’t stop crying and wondering about her life . However , after reading these posts in this site I’m beginning to feel much more positive knowing how many brave and wonderful people are managing this and living very active life’s . I know in my heart they are going to find s cure for this disease. In the the meantime they are constantly creating new pumps and methods to make the daily grind easier . I hope I can learn to stay positive for my daughter and I will be looking for you as a mentor for my daughter. Take it one day at a time because life is just one big roller coaster . Stay strong !


(Megan) #10

I’m so sorry about your daughter! I hope she’s doing well and I totally understand what your going through, my parents are the same way. But you’re right this site is so hopeful and uplifting, I come here whenever i’m struggling and need a little extra push. Thanks for your reply and hope things get easier with your daughter :slight_smile:


(Nichole Acosta) #11

Hi Megan,
I was diagnosed when I was 18 so slightly older and I am on insulin pens. I find them to be very portable and easy to use. The glooko app and bluetooth cable have really helped me track my glucose patterns and gain better control. You should also check out the T1D podcasts (free from Jumo Health) They touch on everything to prepare for for your college years as a diabetic. Start there and stay in touch. You can follow my #sugarfreedom journey on instgram at @nicholeacosta for additional motivation.


(sarahjod22) #12

Hi Megan!
I am in my early 20s and have had this disease since I was 4. I think one of the biggest things that helped me cope with this disease was learning to live in the moment. I don’t think about a lifetime ahead of me with diabetes or I get overwhelmed. I don’t think about how yesterday went (especially if it was a hard day with blood sugars). I even discovered while I was in college there was a whole group of students who had different chronic illnesses and we could joke at what no one else understood. I have a pump and I love it! I hated it when I first got it because it is uncomfortable, but if you give it Time it grows on you and eventually feels like another part of you. I hope you adjust to this life with type 1 easily!


(NickADOC) #13

Megan,

I’m actually 52 now but was diagnosed when I was 18 in the UK, so I have some experience!
What you are currently feeling is perfectly normal, the fact you have to face up to managing a disease that will affect you for the rest of your life is initially, very daunting.
However, this should not stop you doing anything you want to do, it just takes a little bit more planning and taking a bit more responsibility yourself.

Today, there are much better ways to manage this disease and new steps are being taken forward in labs and research centres all over the world. The one thing I would advise is to get used to monitoring your blood sugars with a self-test meter, this is key if you’re going to manage your condition safely.

With regards to treatment, using a pump or injections is really up to you, I believe a lot more use pumps these days as the technology has got a lot better since I was diagnosed. I chose to stay with injections, simply because I didn’t think a pump would suit my lifestyle, working in Sports and as a coach, I simply wanted that flexibility.

Right now, the people you need to be with are your friends and family, educate them about what you have to do, what to look for when your blood sugars may be getting low, Contact your local JDRF chapter, they may have groups that you could go to and discuss your concerns with people of your age and not just sit in an office listening to, sometimes, an intimidating white coat!

Oh, and ALWAYS keeps snacks with you!!!

Good luck - it will get easier.

Nick


(Daniellepidgeon) #14

Wow. I’m a mom of a type 1 daughter who is 9 years old. I’m so impressed with how open and wise you young ladies are. Keep on communicating and as a newly diagnosed T1 please keep reaching out for resources and support. I think you’ll find strength in your process


(RichardV) #15

Megan, I was diagnosed in 1945, when I was 6. After 72 years with type 1, I do not have any serious complications. Take good care of yourself and you can have a long, healthy life. The life expectancy of young type 1 people is very good, almost as good as it is for non diabetics.
You are doing the right thing here. Joining online type 1 support groups can be very informative, and rewarding. Sometimes you can learn more in these groups than you can from any doctor.


(tedquick) #16

Megan, I understand your frustration, which is very normal at this point. At least you have technology on your side, unlike when I was diagnosed in 1956 at age 5. So much more to help you today, particular glucose meters, or better yet, Constant Glucose Monitor (aka CGM) systems that let you know your reading every 5 minutes, and will warn you when it’s rising or falling too fast so you can correct things before big trouble hits.
I’ve been using insulin pumps for 21 years now, and shots can’t compare to what any pump can do to gain (and keep) you good control. It used to be that some endocrinologists thought it best to wait 6 months minimum after diagnosis before starting on a pump, but I think that doesn’t happen much anymore.
Also, a very important tip I picked up: Glucose SAMPLES are taken to decide what you need to do next. Do NOT consider them to be “glucose tests”, since that makes us think we failed in some way. We don’t fail, we learn so that we can do better in times to come.
Another thing you may want to search for,JDRF (the Juvenile Diabetes Research Foundation) has a program available for new diabetics to set up experienced mentors to help them get started better. I don’t know if this s available in your area, but it’s worth looking into.


(vdenerson) #17

Hi Megan,
I am a mom of two Type 1 children. Our eldest son was diagnosed in 2007 at 17, and youngest daughter 2008 at 11. My daughter had a more rough time dealing with her diabetes being a girl with hormones and all. Both are using pens and have never wanted to use a pump. My daughter however is now using a CGM which is connected to her iPhone and is able to see what her numbers are just by looking an her phone. The app. also lets her know when she is trending up or down without having to check herself via pricking herself constantly. it also lets her share with me her numbers if by chance she goes low at night, we are both notified via an alarm on our phones to wake her and I- she then is able to eat something to make sure her blood sugar goes up. Both my kids were very open and accepting of their diagnosis, I’m sure it helped that they both dealt with it at the same time. But neither hid when they checked themselves, or gave themselves shots. They did both in class or at dinner tables when we would go out. My son played high school football, and my daughter soccer, softball and volley ball. (their schools were accommodating. I think accepting of your condition, and those all around you accepting your needs, and everybody wanting what’s best for you makes for your new normal to be just what it is. My daughter summed it up this way " I could be so much worse off, I have a disease that I have control of." We recently lost a friend and my father from cancer and our hearts ache so much. Diabetes is not who you are, it’s just a condition that you have- that you can work with. I hope this helps a little.


(Annalise) #18

Hi Megan
Im 18 now and have had diabetes for 5 years so was diagnosed when i was just starting at my new secondary school! I understand exactly how you feel, everybody goes through it at the start with the whole ‘why me’ kinda thing but you will soon learn that its what makes you you and that it will all become part of your daily routine so dont feel alone! Try and look at the positives of having it so for example when i first got it i was so self conscious about injecting myself infront of people so would get to go in the staff room to do my injections which got people asking me why i was allowed and why i was able to eat sweets etc in class but when i explained it all they thought how cool it all sounded which made me feel more confident about testing my levels infront of people and i felt like i didnt need to hide it from everyone and i should just own it! I’m now on the pump and have been for 3 years and it has literally made my control ten times easier! It allows me to snack through the day without having to inject everytime, it prevents all the bruises i used to get all on my legs from the injections and means i only need to do an injection every 3 days when i change the cannula compared to 5 times a day! It took me a little while to get used to being attached to something all the time but now i know if im wearing a tight top i put it in my jeans pockets or if im wearing leggings and baggy jumper i can just hook it onto my bra and it can be nice and discreet so i wouldnt let that put you off choosing a pump but as someone said previously it is 100% personal preference! I hope this has kind of helped you and let you know we have all been through the same you’re going through and that i still have billions of questions even though i’ve had it for 5 years! Feel free to ask me anything in the future Annalise xx


(Carolyn Martin) #19

Hello Megan. I can’t begin to understand how you feel but as a mother of a 5 year old diagnosed with T1D 5 months ago I know how scary it’s been for me and at times like I was all alone. But 5 months later I can say it’s become a normal routine for us and we have met wonderful support through JDRF and Typeone nation. Get involved and learn all you can about diabetes and know that you are strong and will make it through this rough patch.


(stephensyu) #20

Hi, Megan, I have T1D since 1955 at the age of 9. I went thru all the mistreatment and in very good health condition at 71. I retired from SF General Hospital as Chief Clinical Chemist, Toxicologist after working in Pathology field for 40 years.

I believe that all type 1 patients has anti-islet antibody, an autoimmune disease so to have high blood glucose. But about 35% has one auto-antibody with much less complication. Some has many auto-antibodies which cost diabetic complication.

You might be in one of that 35% population with good life to enjoy even I went thru the most ridiculous doctors who knew nothing. My parent expected me to die before 20.

I live in beautiful SF Bay Area and enjoy my life with two old children graduated from Stanford and Brown University Medical Schools - They thought I would die soon. but i feel as if i am only 35.