Newly diagnosed with diabetes: What we wish you knew

Newly diagnosed with diabetes: What we wish you knew

When newly diagnosed with diabetes, it’s natural to feel overwhelmed, scared, uncertain, and confused, asking yourself, “What will my life be like now?” We asked our friends in the community what is the number one thing they wish someone who was newly diagnosed with diabetes knew. We received over 650 insightful words of wisdom, and gathered 12 of our favorites we hope you’ll find encouraging. The diabetes online community (DOC) has an inspirational attitude and outlook on life. We thank every one of you for being a part of it. 

What advice do you have for the newly diagnosed?  

1. It’s OK to get frustrated and mad

  “It's totally okay to get frustrated and mad sometimes because of diabetes. Have a good cry. Tell diabetes to go where the sun doesn't shine. We are human. Take a breath and sleep it off. The next day always seems a little better. Don't let people make you feel bad because you get upset over diabetes at times. When that sadness and frustration is the dominant theme in your diabetes care is when those feelings become unhealthy.” - Amber Rueger 

Bottom line is that your feels are valid and you should have the opportunity to process your emotions with no apologies to anyone else.   

  2. It’s a marathon, not a dash

  “Diabetes is a marathon, not a 500 yard dash. There will be good and bad days. Learn to roll with the punches. YOU are in control of your disease, learn about it and be your own advocate.” - Joanna Wagner Moore 

Once you take control of your diabetes management, you can be better prepared for the marathon. Learn all your options to manage diabetes to find which works best with your life.  

 3. It’s OK to feel scared, cry, and ask questions

  “It’s OK, you might feel scared, but it’s OK. You might want to cry, go ahead and cry. And you might feel alone, but you’re not. You might not see it now, but it gets better. Ask your 1,000 questions - over and over again. Don't think ahead too much, and take one day at a time. My daughter was 8 when she was diagnosed. It was the hardest thing for us. No family history auto-immune, total surprise to all of us. By the time we got her to the hospital her blood sugar 994. Yes 994 and she slipped into a diabetic coma for two days. She is now 12 doing great and everything and anything she sets her mind on. She is on a pump. Please anyone out there if you need to talk/share or just someone to listen, message me...I know I needed that in the beginning.” - Angeline Deo 

Just like Ruegar said, let yourself feel all the ups and downs and it may help to talk to an Ambassador while processing your experience.   

4. Be patient

  “Be patient. Be patient with yourself, with your friends, your family, and your doctors. It's a lot to learn and though it's all really daunting and overwhelming now, it does get easier. It does become second nature. You'll soon forget what life without diabetes was like.” -Cassie Haupt 

Take each day one at time and know that you and your support network will be experts in no time.  

5. You don’t have to learn everything in one day

  “There is a lot of new information to absorb...you don't have to learn everything in one day, and every day is a new day, especially in pump training. Diabetes is a big community. Don't be afraid to ask. We have all asked those asked questions. Welcome!” - Kellie Hickson 

Becoming diagnosed with diabetes comes with a lot of questions and luckily there are so many resources available.  

6. Be your own advocate

  “Be your own advocate! Learn everything you can from diabetes educators, others with type 1 or 2 diabetes, which ever type you have, and support groups. Don’t be afraid to LIVE! You can do anything a person without diabetes can do, just with a twist! Forgive yourself if you stray off path, just get back on routine!” - Angela Rodgers    

7. Take it one day at a time

  “You have to take it one day at a time. There will be good days and bad but never give up. You can still live a healthy normal life and do anything you want including running full marathons. I was told I couldn't but I did.” - Natalie Miller 

Wagnor Moore touched on the same point, and that is that you should expect some road bumps along your diabetes journey, but don't let that stop you from living your life.  

8. You are not alone

  “You are not alone. When I was first Dx in June 13 I knew nothing about diabetes. From online support to local chapters I knew nothing about, but I soon learned lots of great information. Thanks for everyone's support!” - Jason Williams 

The diabetes online community is very kind and supportive of each other, especially for those newly diagnosed with diabetes. Find a group that resonates with you.  

9. Talk to others with diabetes

  “It helps to talk to others about this disease; join a group, try and get your care givers/helpers to join a support group as well. Just to talk to others about T1 helps SO much. You are NOT ALONE, and it is OK TO ASK FOR HELP! Rock on!” - Renee Galvin  

10. Perfect numbers don’t exist

  “Perfect numbers don't exist. Good management through various things like multiple finger pokes and doing something about those results (insulin/food) is the key to success to this secret club.” - Roxanne Hobbs 

It may be challenging to stay in range, but for those who use the MiniMedTM 770G insulin pump system, getting close to perfect may be more attainable with the My Insights program.  

11. You can do it

  “You can do it. No one said it was going to be an easy life change. You will have your ups and downs, and even get sick of people trying to tell what you can have and not have and that you can't do what you used to do. Just remember get the right support team and you will be just fine. The pump is a great life saver too.” - Lisa Oltsch  

12. Never stop living and achieving your dreams

  “Always listen to what your body is telling you and NEVER stop living your life and achieving your dreams......” - Lisa Krettler     

Are you feeling alone in your diabetes journey, have questions about living with diabetes, or wonder what life is like with an insulin pump? A great resource after being newly diagnosed with diabetes is to connect with one of our Medtronic Ambassadors, who would be more than happy to talk with you.

 

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Submitted by Susie warren (not verified) on

In reply to by Commenter (not verified)

I just cant accept this and it has been going on a while

Submitted by LOOP Blog Editorial on

In reply to by Susie warren (not verified)

I’m sorry to hear that, Susie. I hope the blog post inspired you. We’re always here for you if you need anything!

Submitted by ira south (not verified) on

In reply to by Commenter (not verified)

I am a type 2 diabetic. I want it gone, simple, I am working with a Dr. to reverse it. I went from 1 med, doubled that, added a second, it was doubled and then 2 more were added. I said enough. I what this gone.

Submitted by LOOP Blog Editorial on

In reply to by ira south (not verified)

Ira, I’m sorry to hear you’re frustrated. Sometimes it can take a while to figure out what works best for your diabetes management, but don’t give up and continue to work with your healthcare provider. If you’re interested, you can connect with one of our Minimed Ambassadors, Rachel, who was diagnosed with type 2 diabetes to learn about her experiences you may find valuable: http://www.medtronicdiabetes.com/ambassador-profile?ambassador=84. Please let me know if there’s anything else I can help you with. We’re rooting you on!

Submitted by Marc (not verified) on

In reply to by Commenter (not verified)

Look into a new way of eating and don't get wraped up in the ADA guidline which are outdated. Check out many Diabetic Facebook pages and Low Carb/High fat Diets ( Ketosis) diets. Remember most Doctors follow the American Diabetic Associations Guidline that are out dated and promote a higher amount of carbs than need to be healthy and tackle T2 without medications.

Submitted by LOOP Blog Editorial on

In reply to by Marc (not verified)

Thank you for sharing your own wisdom with us, Marc! Glad you’ve found what works for you.

Submitted by Mary Jo Rucker (not verified) on

In reply to by Commenter (not verified)

I have been insulin dependent for 44 years. I grew up with a parent who was Type 1. I have always had the support of my family and especially my husband. The pump and sensor have been great. I have tried not to let my disease keep me from doing what I want to do. I believe that tight control has helped me to escape the heart disease, kidney disease as well as eye problems. I have a lot of things I want to do and enjoy so I made the decision to control my disease.

Submitted by LOOP Blog Editorial on

In reply to by Mary Jo Rucker (not verified)

Mary Jo, I’m so happy to hear you’re doing well on insulin pump therapy! It sounds like your family is a wonderful support system. Keep up the good work!

Submitted by Dana (not verified) on

In reply to by Commenter (not verified)

I think I would have liked someone to tell me not to let a number define me. My first endocrinologist was incredibly judgmental and I was 1,000 miles away from my closest family so I was dealing with the diagnosis on my own. I was so serious about my BG and A1C that I forgot to have fun and live my life as an early 20s woman!

Submitted by LOOP Blog Editorial on

In reply to by Dana (not verified)

That’s great advice, Dana! Thank you for sharing your inspirational words with us.

I have a 14yr old daughter Lexi who has been struggling with diabetes for 2 yrs. She has an A1C of 15.4 and is on many medications to control blood pressure, cholesterol, GERD, hiatal hernia. I need more medical help with her and we are on our 4th Endocrinologist.. I am a single parent in desperate need of more medical attention.. Please HELP us... Thank you sincerely Erika Jackson mom

Erika, I’m so sorry to hear your daughter Lexi has been struggling with diabetes for the past two years. I can imagine this is very hard for you as a parent. There are many places online to connect with others who are living with or caring for someone with diabetes that may be able to share some helpful tips with you. You can use the following link to find a few of them: http://www.medtronicdiabetes.com/community-resources#more. Please let me know if there’s anything else I can help you with.

Submitted by Mary (not verified) on

In reply to by Commenter (not verified)

My daughter is a type 1 and we have been on the pump for 7 months. I pushed really hard for the pump and I feel our nights are constantly chasing alarms. We eat at 5pm then at 8 she checks bs again to make sure all is well. By 12am I am up checking but usually an alarm high or low is alarming... We burn through strips trying to keep the sensor going. Any advice would be appreciated. I just know we must be doing something wrong our nights should not be this difficult.

Submitted by LOOP Blog Editorial on

In reply to by Mary (not verified)

Hi Mary. I’m sorry to hear your daughter is having trouble with the alarms on her CGM. Please email me your daughter’s contact information at loopblog@medtronic.com, and I will have a member of my team reach out to try and help. In the meantime, you and your daughter may find this information on sensor alerts and alarms helpful: http://www.medtronicdiabetes.com/customer-support/device-settings-and-f….

Submitted by vulcan alex (not verified) on

In reply to by Commenter (not verified)

This article has a lot of good things in it. My take is that diabetes does not generally go away and in many cases is very difficult to manage no matter what you do. You can eliminate every food that you enjoy and that will probably work, but who wants to live like that. I also believe strongly that being emotional about your situation is not a positive thing, and just wanting it gone is not either. Good luck to all.

Submitted by naomi.kingery@… on

In reply to by vulcan alex (not verified)

Vulcan, I’m glad you found this article helpful. Thank you for sharing your encouraging words with us. Keep up the positive attitude!

My 26 year old son was Dx,d in 2006' @ Chicago Comer,s Hospital; he was then transferred to Riley Hospital where he was then given much Diabetic teaching, I.e., Diet; Insulin admits ration techniques. Things were very overbearinly overwhelmingly, hard to accept & deal with at first, but then we made a concerted effort to conquer this newly Dx'd tragic, ongoing Disease!! Now this was back in 2006'; however, my son went into a, " honeymoon period ", shortly after he had been on the Valp, IN High School Swim team. My son was in shape & also, " Compliant with his newly Dx'd Type 1 Diabetes "
. Today, unfortunately, my son had since had a, " Relapse ", when his Diabetic Sx.,'s returned with a, " Fierce Return ", he's now been, " Noncompliant with taking his Insulin, " Haphazardly ";Noncompliant with not only checking his Bld Surgars Regurly; also, not always watching what he eats, but has also stopped altogether swimming, excercising too.
He's already been hospitialized x2 with, " Diabetic Ketoacidosis ", he doesn't even see his Diabetic Dr., let alone he doesn't even have his Dr.-ordered Labs done either. If I didn't know any better, " He's on an ongoing Mission to Self-Destruct "; he's also a brilliant ' Aspergers Savant with Computers, he currently works in downtown Chicago, Ill. as a Computer Software Developer. He lives too far from home in Wheaton, Ill., unfortunately this d/t so much, " Bulleying which he was a victim of back in his aahigh School Days, for whichnhe never had recovered from. My son has been compliant with his ongoing Psycho-Therapy, as well as on meds to deal with this ongoing isssue, which has made him Suicidal as well. I'm beside myself to sit back & whatch my son behave irresponsibly with his precious life, yet the irony of this whole picture is that he had been on the Dean's List every semester while he had attended college when he had achieved earning a Bachelors Degree in, " IT ". I've had to, " Micro-Manage " his Dr.'s Appt.'s since he doesn't really attempt to make an effort to make his own Dr.'s Appt.'s; I really don't know hlow long we can keep going like this. This is so Tragic & Fustrating for me; " when is the other shoe going to Drop "!!

I am trying so hard to deal with this issue by being in Psycho-Therapy for myself; Praying Everyday for my son to try to help himself to make a concerted to @ least stay alive.

Judy, thank you for sharing your experience with us. I am very sorry to hear about this, and can imagine the concern it causes you as a mother. There are many places online to connect with others who are living and caring for people with diabetes. You can find a few of them here: http://www.medtronicdiabetes.com/community-resources#more. Stay strong!

Submitted by Megan (not verified) on

In reply to by Commenter (not verified)

The hardest part is trying to understand why the medical bills are so overwhelmingly expensive. That and the total lack of support. My father has tried but he also likes to say that I probably brought this on myself with a poor diet. Yes, I was 33 at dx with t1. But it wasn't like I was eating poorly, well, usually, we all need a cupcake once in a grand while! I still believe this. I know that it hasn't been long. My friends seem afraid to hang out with me because they do not know what I can do. I try to tell them that I can do anything, but things will just never be the same. This dx was quite the birthday present. It makes sense in some ways. I hadn't been feeling well for some time. I just chalked it up to finals, clinicals, and a full time job. I'm still in school and trying to gain better control daily. Learning to look at my life like a marathon is a struggle and I wish that my doctors would take some more time to answer my questions but every single one of them tells me to ask someone else. I'm feeling like the last few months are the hardest that I've yet to experience. How am I to afford these doctor bills and the insulin? I mean cripes, even with my insurance, I shell out what I make a month plus some. :(

Submitted by naomi.kingery@… on

In reply to by Megan (not verified)

I'm sorry to hear that you're going through a difficult time, Megan. If you haven’t already, I recommend seeing an Endocrinologist who can help answer your diabetes questions and management. If there's something we can do to help, please don't hesitate to reach out. There are also many places online to connect with others who are living with diabetes. You can use the following link to find a few of them - http://bit.ly/1nHj6pA.

Submitted by munawar (not verified) on

In reply to by Commenter (not verified)

My daughter is turning 8 next July diagnoused type1 last October she was doing fine with mixture insulin but recently becoming very hard to control, only eating very small amounts of food will makeep her bs good, I am confused and when ever I think I have control things change even HbA1c has raised ...

Submitted by naomi.kingery@… on

In reply to by munawar (not verified)

I’m sorry to hear about this, Munawar. I recommend talking with your daughter’s healthcare team, as they can give you the best advice to meet your daughter’s needs.

Submitted by Kim Bodley (not verified) on

In reply to by munawar (not verified)

Munawar, I'm sure your diabetes team has told you this, but it is important to remember that during the 'honeymoon' phase of Type I diabetes your daughter's body is 'sometimes but not always' still producing some insulin. Her system is also learning how to deal with the artificially introduced insulins. My son was diagnosed at age 12 and the first year was a nightmare! It seemed that we were constantly chasing those elusive numbers! But - hang in there! Don't get too caught up in the numbers. In 15 years, my son's A1c is more out of target than in - but he is healthy and doing well. The best message you can send to your daughter is that she can LIVE with diabetes. Focus on helping her maintain her life, while treating her diabetes. The first year is the very hardest! It gets better! You are doing an amazing job! She will live to see this disease cured! Don't let the ups and downs of diabetes become the focus of her life! If she eats a well balanced, healthy diet and follows her diabetes team's direction regarding insulin dosages, she will do fine. A perfect A1c is not the goal - it is a guideline to shoot for - not a prize to be won! Good luck!

Submitted by john p kroetz (not verified) on

In reply to by Commenter (not verified)

I will be 72 on 9/6 and i cant believe i have hung on in this long marathon struggle called type 1 diabetes, diagnosed in 1957. Back then there were only cow and porcine insulins by injections and urine testing. I have too many stories to list about my struggles to survive but i did.
Now we have these great pumps and blood testers at our disposal and we should all be grateful.
I still get frustrated with my issues at times but i just keep rolling along.
Peace
John Kroetz


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