I am a 54 year old mom of a T1D son who was diagnosed 2 years ago just 2 months shy of turning 22. He has not been able to wrap his brain around his new normal. He’s gone to college, gone out west to wrangle horses, came home to Vermont to work fulltime and focus on navigating t1d and yet he’s back at the hospital tonight in dka, his 4th dka since coming home 8n August. I was hoping to talk with someone who has been in the same situation. Someone diagnosed as a young adult. Kindly, Beth McDonald
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hi @Mombeth4pat welcome to the forum Beth. It doesn’t matter if you get diagnosed as an infant or as a 65 year old: the experience is unpleasant. If you are old enough to “remember” life before diabetes, then you will always have space in your head to be able to compare what you “used to do” before to what you “have to do” now. Regardless, getting diagnosed is a trauma. It comes with everything any trauma would come with, including post traumatic stress.
The disease represents significant loss. You’ve lost your previous experience with health. Any loss requires dealing with grief, it is the same as any other grief. Many describe grief as having stages: denial, anger, bargaining, depression and acceptance and you don’t generally go through these in order, and for many of us, there is no real end to grief, although over time it loses some intensity.
DKA happens when you aren’t taking enough insulin. It’s a horrible experience. I think it’s pretty common for people to go through a lot when they are diagnosed, but i can only comment that for me, getting diagnosed as a teenager, I went through 20 years of anger, depression and isolation, during which I did the minimum possible to survive. When you are not doing a great job with blood sugar you feel sick and there was only so much feeling sick I could take before I decided I needed to take better care of myself. The big result, I am in excellent control today, but I had to make the decision in my own time…
The key thing is to talk about it. In cases of depression then therapy is the better bet. good luck!
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@Mombeth4pat Welcome to the JDRF forum. There are moms here helping their kids deal with T1D and I hope they chime in. Another resource JDRF offers is the local chapters. Greater New England JDRF Diabetes Chapter Support has lots of events in Vermont. You can give them a call and ask for someone to talk to or see if your son will use it as a resource to connect with others he can learn from.
I’m willing to talk but I was the one having a hard time learning to live with diabetes and making his mother worry.
In addition to the grief Joe wrote about that we all have or are going through is affording medication and devices part of the issue?
Thank you Joe so much. You obviously understand what I am seeing with Patrick. We all feel he needs to address the mental health side of this and we are trying to convey that to Pat. If I can ask one more question. Pat hates his pump. It looks like a pager with a little tube attached to his belly. Pat is a carpenter and feels it is too cumbersome. Just wondering if you have any advice on a less intrusive pump. Although its been 2 years we still have so much to learn. I also get what you are saying about Patrick needing to make the choice to come to terms with this and choose to move forward. But if you dont mind, we are trying to gather as much information in the meantime. I truly appreciate your response, as well the other responses we received. Very Kindly, Beth
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Thank you Chris, I am very new to this forum. I appreciate your resonse and will check out the link you provided. I hope I can convince Pat to also join. Very Kindly, Beth
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I’m not sure I did that correctly. Ive never been on a forum. Beth
Hi @Mombeth4pat and welcome to the forum. You said your son finds his pump cumbersome - which one is he using? Minimed and Tandem T-Slim are similar in size but Tandem recently came out with a new pump called the Mobi which can fit in the coin pocket of a pair of jeans! It uses tubing but there is an option for a very short length - I think 5" - and there is a “patch pocket” you can use to wear the pump directly on your body rather than sucking it in a pocket with longer tubing.
I was on Tandem (not the Mobi) for several years but switched to the Omnipod n late 2022: What is Omnipod? | Tubeless Insulin Pump Therapy
Omnipod has no tubing at all. It comes with a controller but can be controlled by certain Android phones now. An app for iPhones will be available sometime this year - for now we iPhone users must use the provided controller.
Dorie, thank you so much. Patricks pump comes from medtronics. It looks like a pager you wear on your belt, about 2 1/2 inches by 3 inches. There is a little plastic tube that connects to your body. Dorie, I just don’t know how to navigate this. I assume sleeping with something that looks and feels like a pager is tough. Thank you for your suggestions, I’ll look into it. All of you at JDRF have been so helpful. Thank you from the bottom of my heart. I just don’t know what I’m doing. I wish there was a T1D parent retreat to give me and my husband a crash course in navigating T1D. Your communication is wonderful. Kindly, Beth
My first pumps were Minimeds although I switched to Tandem a while ago. With tubed pumps I just laid my pump next to me, used the clip to attach it to my waistband, or if had pockets I would tuck it in. I try to place my Omnipod where I won’t sleep on it - I sleep on my back so I use my stomach, arms or thighs. You get used to what works as far as placement.
Some people just don’t like having something attached to their body, and prefer taking injections. Although pumps are considered the best way to administer insulin, many people do just fine on shots. I was diagnosed in 1963 and we had to carry around needles and a bottle of insulin if we needed to inject while out; but now there are insulin pens that let you dial your dose when you’re ready to inject. It’s fairly quick and painless.
I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful, and might help you and your son understand diabetes a bit more. I read it for the first time three or four years ago and still learned some new things!
It’s not unusual for people with diabetes to seek professional counseling. And meeting up with others with Type1 can be helpful as well; so check out the Resources tab at the top of the page and you might find events in your area to check out.
Your son is welcome to join the forum - he’s welcome to chime in on discussions or vent if he needs to. And so are you.
Dorie, thank you for taking the time to share so much helpful information. You have no idea what your experience means. I am over the moon grateful. Love, Beth
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You are more than welcome. Any chronic condition is a “family affair” and it helps for everyone to become educated. It might help for you to learn some more about diabetes so you can help your son: sometimes people around us pick up on cues that something may be going on with our numbers - certain behaviors that seem out of sorts - and that’s helpful even if we use a CGM. I should probably give myself a good head slap for asking this, considering your son is a young adult, but do you think he would let you go to dinner office visits with him? Not to pry but to learn more about diabetes and so you could get a better understanding of his diabetes specifically? Some people find it helpful to have someone go with them to make sure they ask certain questions and cover certain topics, and to help them remember what the doctor advised.
There are some Juice box podcasts you might find helpful - be sure to look for the Pro Tips which seen to give an introduction to Type1.
You are doing fine using the forum. So your son has a Medtronic pump and is currently working as a carpenter which requires wearing a belt that sits right where he normally wears his pump. Solutions would be to place the pump higher or lower. Higher would mean something like a runners arm band for a cell phone, t-shirt or safety vest with a pocket or an elastic belt with a pouch he can wear above his waist. The elastic belts are available for runners, I’m more familiar with the ones for wireless mics like this. To hold the pump lower than a tool belt he could wear a pair of basketball shorts under his jeans and put the pump in the shorts pocket. Cutting a hole in the pocket of cargo pants so the pump or tubing can pass though from the inside can also work.
I hesitate to recommend a different pump because hopefully working as a carpenter is just to get by right now. Life with diabetes is tough, life with diabetes and a job that doesn’t come with good healthcare is tougher. Don’t get me wrong, we diabetics can do anything we want. But it is important to account for the cost and the risks that come with those costs when evaluating job opportunities. Jobs with healthcare and reliable hours make life easier. If Patrick is currently on your insurance please share the Explanation of Benefits from his DKA events with him so he knows what is coming. This is something I wish my parents did for me. Instead I found a bill from an ambulance company in a box 20 years later. If he has career goals and the drive to reach those goals then in addition to the Tandem Mobi Dorie mentioned the Insulet Omnipod is the other compact pump on the market that can be worn out of the way.
Hi @Mombeth4pat good information from Chris and Dorie on alternate pumps. I’m just agreeing. I had Medtronic, I have a Mobi (it’s very small) but it’s still a pager with a tube. He might like Omnipod. I deal with machinery and equipment and the pumps do get in the way a little. There is nothing wrong with multiple daily injections either.
Again Joe, thank you so much. All of your advice, thoughts, and care matter to me and mine. Kindly, Beth
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@Mombeth4pat how is Pat doing? Has he recovered?
Yes, he came home. He has admitted to being depressed so we’re trying to find someone for him to talk to. Also looking into an omnipod pump. Would love to find a support group for him. Thank you for checking in. I’m grateful for this JDRF community. Kindly, Beth
I’m glad he shared what he’s feeling - that’s an important first step. When he does his training I suggest he check out the Juicebox Omnioid podcasts as well - they were a very helpful addition.
If and when he does make the switch he should keep his Minined pump and any remaining supplies - even if it’s not his preference it’s good to have them as backup just in case.
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Thank you Dorie. We are stockpiling his pens. I’ll keep you posted. I’ll continue looking up and encouraging him. Beth
I was diagnosed when i was 7 1/2 and am 27 now if you want to talk to me
Sorry - I thought he was on a Medtrnic pump and was referring to the infusion sets.
Is there a reason you are stockpiling his pens? Does he have trouble getting his insulin? Apologies if an being nosey.
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