Looking for support


(xfatalxflawx) #1

Hey
My name is Nick. I’m a 26 year old T1D who has absolutely no idea what I’m doing. I was diagnosed just under a year ago and have just floated by so far. I don’t have any sort of control over it so far, mostly because I dont know what I’m doing. Doctors and specialists can only give so much insight.
I’m looking for people I can talk to on a semi regular basis, or maybe even someone who will hold me accountable through this until I can ingrain everything into my daily routine.
Anyone who can help would be greatly appreciated.
Keep up the good fight.


(moneypenny) #2

Hi Nick,

I was in a similar boat as you a few years ago, when I was diagnosed at the age of 23. I’ve got good control now and might be able to answer questions you have. Everyone in this community knows that it’s hard, and there will be times where it feels impossible. Are you using an insulin pump? What insight are you missing from your doctors?


(xfatalxflawx) #3

I appreciate your response.
I’m not on a pump, no. Just transitioning from syringes to pens. Hope to discuss the possibility of a pump with a doctor soon.
The only issues I have with the doctors and such is that they have all this information and training, but can’t help me much through the psychological part. They can give me all the printouts and such that they like, but it’s the support system that I’m missing.
I’m really bad at managing my Diabetes. I’m a stress eater, and not very good at figuring out the carb serving thing. The only exercise I get at the moment is at work because I spend way too much time there. I eat everything and anything, regardless of sugar or carb content.
Which is why I ask for some guidance, support, and accountability.


(racolej) #4

Nick- great that you are taking the step of reaching out. The eating part is hard- I’ve been watching our 14 year old boy who wants to eat everything in sight struggle with eating. The pen is a great intermediate step before the pump especially if you don’t feel like your getting a lot of hands-on help from the doctor. There are strategies we came up with in making sure there are a lot of free foods around that if he does want to eat more it isn’t as bad- it just means we have to plan and food prep a lot on Sunday for the week.


(moneypenny) #5

Have you tried using any carb counting apps, like myfitness pal or calorie king? That can make the process a lot easier, but it does take time and practice. Nutritionists can also help you out, if it’s feasible with insurance and all that jazz. It’s worth noting, too, that you CAN eat any and all carbs. I was afraid to eat for about a year after my diagnosis, and suffered some depression as a result, but now I have ice cream, pizza, burgers etc. just like I did before diabetes. The pump definitely made it a lot easier, since you can more easily and accurately dose insulin. One thing that helped me was keeping a food diary - I wrote down what I ate, how many carbs I thought the food contained, and how much insulin I dosed. If my blood sugar was too high or too low later, I could reference the diary and make a note of the results. If you can, try to eat some of the same meals repeatedly for a while so you can start noticing patterns.

I hope this helps. One of the big psychological hurdles for me was the idea that I couldn’t eat anything with carbs anymore. Really, though, that is not true. Type Ones need to maintain a healthy lifestyle just like anyone else, but you’ll still be able to enjoy food. Switching to pens will make it easier, as will the pump - I was skeptical, but it really does allow more freedom.


(xfatalxflawx) #6

Im absolutely amazed at the response that Ive received here!
I dont speak only about the amount of people who have come forward with advice for me, but also the short amount of time that those responses have come in.
Thanks to all of you for your advice and support. It really helps me to see that even though this isnt the most common disease, there are still many out there who struggle with the same thing.
I appreciate everything, and hope that I can build support and relationships with many others who can help me!


(janlb) #7

Nick,
T1D can be a very challenging beast that said it can also help you to be healthier because you become so much more aware of the food body connection. Don’t beat yourself up - take one day at a time and make small changes. I know when I try to do too many new things at once it is hard to sustain. So maybe just change what you eat for breakfast, sausage cheese and eggs, Greek plain yogurt and a few berries, just find something you like. Then after a bit start bringing your lunch - I eat a hard boiled egg and vegetables - my afternoon snack is a small amount of nuts.
Even if you are not able to exercise try a few stretches at you desk every 1/2 hour.
Just make small changes and it will not seem so overwhelming…and again this is a very challenging condition and there will be times when you do everything right and still have a bad blood sugar day (stress is a killer on my blood sugar). Good luck.


(system) #8

Nick,

Things can be tough and usually getting things to work how you would like them to is tougher.

Someone, a few years ago told me that diabetes can be either your best friend or your worst enemy. If you treat is right, it will teach you how to eat good food, how to get into an exercise routine, and how to get you head on straight, but if you abuse it, and by this I suppose I mean not following a meal plan, not taking your meds correctly, not taking care of the little things, which seem unimportant but tend to snowball down the road and create other issues, things become tough for you.

You need to learn how to figure out carb counting, insulin dosing, and stuff like this to stay ahead of all of this. It may seem difficult, but, it will fall into place. Are you seeing an Endo or just your family doctor for your diabetes care ?

Arnold


(Jenijeni) #9

Hi Nick,

I totally understand that when your diagnosed, you feel like the world flipped upside down. It can be hard but it does get easier. My daughter has had T1D for over 3 years now and has been on and off the pump. She rather do shots than being attached to a machine and having to deal with questions about the pump.

It’s OK to fill lost for a while while you try to figure it out and learn wht work’s for you the best. I have used apps to track food and carb counts. Then you my get to the point where you cn guess pretty well.

I’m here if you ever need anyone to talk to.


(geva04) #10

Hi Nick!
Take your diabetes as a journey. There will always be a learning opportunity - forget about “controlling” your diabetes, think of managing it as best you can while you continue to live your life. Remember, the science behind diabetes (insulin types, research, technology) isn’t perfect - so we can’t expect to be perfect with our management. I am a Certified Diabetes Educator and Registered Dietitian. I’ve been living with T1 for almost 20 years. Message me if you need anything. I am here for you.

Gabrielle


(nursehawks) #11

Hi Nick!
I’m so excited and impressed that you came on here and not only asked for help but laid it out there what your downfalls are! You’re post will be a hope for others. Not many are ready to share their feelings and put their emotions out there.

T1D diagnosis at any age can be a life altering and mind blowing event. Many don’t even know wth a pancreas is lol.

Many doctors grow immune to the psychological effects because they see it daily. I’m willing to spend any time with you needed in helping you to get to a better place! My son was diagnosed at 15 months and is now 8 1/2. We have been through some of the most bizarre things relating to diabetes and can relate. Even when you have great control, you can still find yourself wearing a “what did you just say… diab-huh?”. I’m a mother of a T1D, daughter to a T1D, and a nurse to many patients with T1D. The good news is JDRF can always help put you in contact with someone amazing to help you learn.

Carbs, treating, hypo-lows, hyper-highs, illness, nutrition, etc. etc. etc… they will come to you. Truly they will. Again, I’m more than happy to talk to you or send you in the right direction.

Whatever you do, hats off to you for coming on here to start!


(bsteingard) #12

@Moneypenny wrote exactly what I would have. Actually, everyone here is giving great feedback! Nick, I don’t have much to add at the moment, other than an offer to be another pen-pal. I’m 30 years old and have had diabetes for 23 years. I take lantus and humalog using syringes. I also happen to be a JDRF volunteer and give advice to newly diagnosed adults on a pretty regular basis (I’m one of the people @nursehawks is referring to). Feel free to message me if you have questions or just want someone to talk to!


(vnyberg) #13

Hi Nick,

My name is Tori. I’m 27 and although not in the same boat as you (with the recent diagnosis) I know EXACTLY how you feel. I was diagnosed at 11. For the last 16 years I’ve had periods of time where I felt great and in control, but most of the time I feel lost and like I’m on a roller coaster. The psychological challenges that arise with a diagnosis like T1 can be the most challenging part in my opinion. Needing to count carbs, dose medication, the constant worrying that you’ve messed something up… it weighs on you.
I am in the process of recommitting myself to managing my blood sugar levels and drastically lowering my A1c (I think my last test was a 9.1) I would love an accountability partner for this journey if you are still in need of someone to check in and touch base with.

Although my A1c is high and I lack personal control, I do have a wealth of knowledge regarding the disease and management. Hoping to connect with you and encourage you on this new journey.

Feel free to message me directly and we can exchange contact info.
Good luck in the meantime :slight_smile:


(JAYARR) #14

I was diagnosed 53 years ago at age 14. At that time, I was told I had a 15yr life expectancy and had to stop playing sports and get used to sitting on the sidelines. Over time, science has come a long way. I lettered in football, baseball and basketball. I play a lot of golf now. I am 67yrs old and am told I look 50. The one thing than saved me was eating correctly. If you don’t get a grip on that, give up and quit treating your diabetes. You wont last long and the problems will be severe. Some of the complications ie: comas, retinopathy, heart disease, kidney disease, amputation, neuropathy to name a few, will not be fun.
Seriously, you can do this!!! All of us have to and it is going to help your long term well being. You will eventually get to where it is second nature and you will feel a whole lot better. Check your blood sugar often until you get under control. This will help you remember how important eating right is. Remember, you can’t reverse most complications and living with the aftermath is not always fun. Only you can control your diabetes. Your Dr can only advise you. He will be able to tell if you are being a good patient.
BE GOOD TO YOURSELF!!


(karenchq) #15

Hello Nick and All,

T1 is definately a life changer, but not a life ender. I was diagnosed in March 2016 and it has been a big learning experience, much of which has been trial and error. I was diagnosed while on a work assignment in Belgium and promptly sent to the hospital for a week to get it sorted out. It was difficult because the majority of interaction with the medical team was in French which is not my first language and I had zero experience with French medical vocabulary. While the care team were very kind and did their best to help me, it was overwhelming with so much information that I couldn’t understand. As well, I was in denial. Thanks to forums like this, I have been able to learn and understand how to better manage this disease. Two things that others have said that helped me emotionally were that your blood glucose measure at any one time is a guide to know how to adjust your carb / insulin ratio rather than a pass fail report card. Secondly, diabetes management is not an exact science. As somewhat of a perfectionist, I would feel like a complete failure if I strayed out of normal range. With these words of advice, I don’t feel like a failure, just know that I need to make some adjustment to get back on the tight rope. I am thankful for the people on this forum who have encouraged and helped me. We are stronger together and really do understand what it is like to manage it on a daily basis. I wish you the best.


(csnash1) #16

Exercise can help with the psychological piece. Check out the JDRF rides. A fabulous way to connect with other T1 patients, see some beautiful terrain, raise some $$ for T1 and stay healthy in the process. I was diagnosed in 2014 at the age of 40 and in an odd way consider it a blessing. It’s brought me greater health, nutrition and connections. These are what sustain me through the hard times. Good luck!


(cdlefevre) #17

I see you’ve already gotten a lot of great advice. I was diagnosed when I was 26 as well, that was 5 years ago now. It turned my life upside down. They psychological impact and feeling alone were probably my biggest hurdles. I’ve dealt with depression for a while and a chronic illness doesn’t help that. A couple things I would say: don’t be afraid to get into talk therapy if you need it. It’s a huge help and nothing to be ashamed of. The best thing for me to help with the isolation was finding a community online and volunteering locally with different diabetes organizations. I help coordinate the yearly walk in my area and help out with another organization that runs several diabetes summer camps. That helped me connect with other Type 1s. I also attended an even called DTreat for 18-30 yr olds with type 1. Great way to find others, it’s a yearly thing so look that up if you’re interested.


(MariaC) #18

Nick,
I highly suggest getting a Dexcom continuous gloucose monitoring system. It will alert you to those rising blood numbers and sudden lows. This was if you are going to stress eat, you’ll have a base line for the insulin and able watch how the carbs affect you. There is a graph that shows your blood sugar level rise/fall. I learned a lot from it. Esp how Pizza, pasta and rice are processed.

I’ve had this for 45 years and thus far doing well. It was not an easy journey. Back when i was diagnose (age 2-1/2) science and management was minimal. The pump changed everything for me. It allowed me to eat when i wanted as opposed to eating to keep up with the insulin.

Now the mental part - yes this diagnoses totally stinks. We all understand that, but it forces us to do healthy stuff. Gotta look at the bright side. Call the Kessler Kroger Institue roll free number for support group. I recently did that for my son (recently diagnosed). It helped him (and me) to talk with others in the same boat.