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What have I become? :( :(

Discussion in 'General Discussion' started by Jacob'sDad, Aug 8, 2014.

  1. Jacob'sDad

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    Any old timer's here know me. I'm Jacob'sDad and at one time I was a regular poster here. I had a wealth of knowledge which I was happy to share, many ideas and theories, and a hunger to learn all I could about type 1 diabetes. I learned so much from the members here and would have been lost without you. I was an extremely dedicated father and wanted to help my son any way I could. His BGs have always been very hard to control but I had a pretty good grip on it. It wore me down physically and mentally but it never beat me. Jacob's lowest A1c ever was 7.0 and I was committed to getting it into the sixes.

    But it all sipped away.:(:( About from the time we switched from Animas to Medtronic things went downhill. Oh, and BTW this is not about saying anything bad about Medtronic. We got the Revel with the CGM but Jacob's skin broke out so bad from the sites, which had also been an ongoing problem with Dexcom, and then there was alarms all night that I could barely hear and it all got to be too much. It was quite a blow to find out that switching pump companies what not going to solve the adhesive problem. Instead of continuing to try to find a solution I just sort of threw in the towel. Jacob stopped using the CGM. Then he went through puberty. Then he started taking on more and more responsibilities himself and I took on less and less.

    In the past we had great results with the steel Rapid-D infusion set. The Medtronic version is the Sure-T so that is what we switched to. But for Jacob the Sure-Ts seem to quite often fail entirely on the third day causing sky high BGs. The performance of the Rapid-D used to taper off on day four (if I pushed it that far) but it was gradual highs and not complete failure.

    Instead of trying other infusion sets or changing sites every two days, I just let things go. I haven't worked hard at solving the issues I have mentioned, hardly at all really, and on top of that I haven't kept up with basal, ISF and ICR changes. His A1c is well past 8.0 and I keep saying I am going to get on top of things but then the days just keep passing by and things remain the same.

    So now I am back here asking for help. I figure maybe if I start getting active here again I can become the diabetes dad I once was again. I need this community. I needed it before and lost it when I bailed out like so many others and went to Facebook. Big mistake. I should have stayed active here. Now I am on Facebook very little so I have time to come back here.

    By making this post I am committing to making big improvements. I don't want to embarrass myself by posting this and then not following through. I'm also guessing that I am not alone and others have gone through or are going through the same thing I am. I want them to speak up too. Nobody should have to feel embarrassed to say that things have gone downhill from where they once were.

    Thanks for reading! Any and all comments are appreciated!
     
  2. Christopher

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    Congratulations on identifying something you want to improve on and taking steps to do so. Sometimes that step is the hardest. As you (and I) are painfully aware, diabetes burnout is a very real phenomenon, not only for the PWD but for the caregiver as well. I am confident that the people on this site will be able to give you the information and motivation you need to make some meaningful changes in managing your son's diabetes.

    Good luck!
     
  3. Beach bum

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    So many times that we worry about our child getting diabetes burnout that we completely forget that we, the caregivers, can suffer the same fate too. The fact that you know that you are burnt out and are reaching out for help is the first big step to getting back on track. You know that there is a wealth of knowledge here and that members will jump on board to help anyway possible. Hang in there!
     
  4. Sarah Maddie's Mom

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    Perhaps you can use the start of the new school year to set in place a few new routines that will get you back in the loop. Simple things like checking your son's bg when he's getting up in the morning, planning some new lower carb breakfasts (if morning spikes are an issue) or establishing the habit of noting on the calendar when a site is changed.

    I find sharing D management to be far more difficult that I imagined, but with teens it is what we have to do, so we do it. :) But it's far more complicated than managing a younger kid. I'm sure most of us who have been living with Type 1 for years have gone through similar patches. You are not alone.
     
    Last edited: Aug 9, 2014
  5. caspi

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    Hi Dave! There was a thread on here earlier this week asking where everyone went and the discussion of FB came up and how there's no comparison to the knowledge gained here vs. "over there". Parent burn out is a real thing and I think we all forget that. I like Sarah's idea of starting fresh with the new school year.

    You definitely are not alone in this. Remember that! :smile:
     
  6. RomeoEcho

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    You are a single parent of three human teenagers and diabetes which feels like having an infant/toddler all the time. It's ok to be burnt out, and at 9 years it is totally normal. Making a public commitment to change is huge. Even if you don't need answers, it's ok to ask for help.

    One thing that I have found helps with burnout is to make a big change. New equipment, new insulin, new anything. It doesn't need to be necessarily better, but just different. It makes me pay more attention to what I'm doing and makes it feel easier somehow even if it isn't really. It might be worth trying a different infusion set, if the sure-t isn't quite right anymore. His body might have changed slightly and teflon may be better now. Alternately, how do you like Apidra? I thought I liked it when I was on it, but when I switched back to Novolog I realized Novolog really was better for me.

    There are a lot of threads on here about adhesive issues. Try reading through some of them and see if you can find something that works. If you can find a way to get him back on a cgm for a while, it can help get you back on track even if it isn't a good long term answer for him.

    Remember that you are not alone.
     
  7. mmgirls

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    Been there too my friend and we are not even close to puberty, and now I have two.

    You have made yourself accountable by starting a thread about it, and I agree that with the new school year naturally it is a time of change.

    Down load and look at the last month or so and look at the data, where are the red flags? What are those little nagging things that you know you should be doing but haven't been doing. What responsibilities have floated to your son that he does not need on his plate that maybe compromising efforts towards control.

    Become accountable again.
     
  8. sszyszkiewicz

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    Wow what an introduction! I am relatively new here, and when I read your post I thought to myself the answer to your question (what have I become).....is that you remain the same guy that met Jacob on the day he was born.

    You are his father, a privileged title to be sure.

    Nothing ever changes that.

    Nothing.
     
  9. Mommy For Life

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    When I first joined CWD, I was just learning the basics of D care. It was daunting to say the least. I remember trying to find a decent logging chart to track bg numbers. I actually reached out to you and you were kind enough to email me an excel chart you created for your son. I really appreciated that! We're coming up on 3 years since D slammed into our lives. When I've hit slumps over the years I try to get back to the basics. Logging #s, downloading pump info, visiting CWD, and asking DD's endo for feedback. Sometimes going back to square one is the best way to get back on track.
     
  10. hawkeyegirl

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    Hi Dave. It's really nice to see you around, but I'm sorry to hear that you are struggling.

    I don't have a ton of time to respond right this second, but your post made me think of that old adage: "How do you eat an elephant? One bite at a time." :)

    So I think you need to decide what your first bite is going to be. And make it an easy one so that you will feel a sense of accomplishment. Maybe it's setting a phone reminder so that the site gets changed every two days. If you're a night owl, maybe it's doing a midnight check (if he will let you) to help get a stretch of decent numbers while he's sleeping. Or if you're a naturally early riser, maybe it's a 5am check to get the morning off on a good start. But don't try to do it all at once, or he'll be irritated with you, and you'll feel like you failed again. Choose one thing, try to do it for a month, and see what happens.

    I hope you're feeling better today, and I hope to see you around more. You were missed. :)
     
  11. nanhsot

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    Welcome back, your voice was definitely missed. Don't forget advice you've probably given before: diabetes is a marathon, not a sprint. You just slowed down your pace for a bit but are now back to keeping things steady. Teenagers are a whole other form of marathon, so you've got the double whammy! Just do the next right thing.

    Looking forward to seeing you around.
     
  12. StacyMM

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    You've been at this a little longer than I have - our first diagnosis was in 2006. About two years ago, we were in a pretty comfortable place. DD was on a pump break, she was perfectly happy with our management, puberty wasn't even on the horizon and we even had the extra bonus of her being incredibly compliant. She's one of those kids that like rules and order and happily sticks to them so we had no issues with her eating without telling us or forgetting to bolus or anything. I am the primary pancreas - I'm the one that works out changes, uploads info, reviews charts, does research, etc. I was in a really, really comfortable place and had slid a bit in diligence just because life with diabetes was in a relatively steady stage. It's really easy to do and I think it would have continued indefinitely.

    In our case, the wake up call was the diagnosis of my son. Suddenly, everything was crazy. I had two kids with diabetes now. And suddenly I had puberty issues, a tween that had a very strong case of denial and an absolute sense of "I can do anything I want and the number doesn't matter because I'm invincible." And we had a honeymoon, which we'd never experienced before. I was scrambling and overwhelmed and realized that I needed to make changes.

    In our case, adding/updating technology was the answer. As was reaching out more online for support. As far as online - you can see by my post count that I'm not a big poster. I'm in several Facebook groups and am more active there. For technology, my son wanted a pump immediately. I focused on that and we had him pumping less than 3 months later. Our daughter decided to go back to pumping and we got her a new pump, too. Once the pumps were up and I had basals and such worked out and tested, I worked on the Dexcom and we were up and running on those less than 2 months later. We had a really rough summer with pumps and that took so much from me - it was overwhelming and depressing and frustrating. So we did new technology again and switched DD's pump again. Then we had to get through the learning curve on it, too.

    The difficulty for me now is staying on top of everything. There are times when both are in growth spurts or both get sick and I feel like I get nothing done but diabetes. When I am so overwhelmed that I make myself take a day off and DH handles everything. or my mom covers while we both go somewhere. And the kids are older now and know what to do - I don't leave them alone, but I have a lot less worry about leaving them with people that only know the basics about diabetes. I'd love to say that I have it all together and can handle this but I can't. I think burnout is a very, very real issue for caregivers. Diabetes is hard, and for those of us that started out with younger kids, it was so intense because you have to manage a disease that you aren't experiencing with no cues from the actual diabetic because they are too young to articulate, understand or feel them. I look at how my kids are managing their diabetes (they are both fairly independent at handling alarms, counting carbs, bolusing, using temp basals and I watch over them but am letting them try their own solutions first) and it's so very different from how I was doing it 8 years ago. They can feel highs and lows, they have better tools available to them, they know what quick carbs make them feel better the fastest, they understand how insulin works, they can operate all of their own gear. I have new worries (giving up any amount of control is hard!!) and I still do all of the basals/settings and my husband still does all of the nighttime stuff and we still have two kids in puberty. I've finally decided that there is always going to be something more I could do or something else I could try but I am not perfect and I will just do what I can and focus on the most important issue only. For now, it's getting everything ready for school - nurse's office supplies, classroom kits, 504s. Then it will be working out basals for school once they have schedules. Then it will be something else. And then something else. Over and over, one thing at a time. And that's become my new approach.

    One thing at a time.

    I suggest you try the same. Find one thing you think you can change and then do it. Then try one more thing. And do it. Diabetes is not something that stays the same very long, especially with kids/teens, so there will always be one more thing. But the only one that matters is the one that you can fix/adjust/change right now.
     
  13. Lightly Salted

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    Awesome post!

    I'm a relative newbie compared to you, Dave, but keep on keeping on. It's a marathon, not a sprint, and you're just correcting course.
     
  14. Ali

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    Stacy it is late so I may reply again. But when I was first diagnosed many many years ago as a teen, my folks did nothing, nothing...They wen with me to one initial appointment, they tried to adjust a few recipes,but we had a family of six and they were busy. Was that the best approach, no, but what you are doing is worlds ahead of what my folks did and I survived, and I am a healthy almost 60 year old with three kids, so FWIW pat yourselves on the back and ask for more help from your endo team and your kids with T1...
     
  15. Mish

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    Hey Dave. Glad to see you back.

    Your timeline is pretty much identical to ours and what you're seeing and feeling is what we're also seeing and feeling. It's going to sound like a total cop out, but I think what you're seeing is normal diabetes in younger teenage boy and normal diabetes in a parent that's been doing this for almost 9 years. Even if you were staying 100% on top of everything, you'd probably be seeing the same things. Puberty ****s the pants off of diabetes and there really isn't much you can do about it. I'm not saying to you that you shouldn't try, but I"m saying that I don't want you to beat yourself up over something that we all see. It's the RARE parent who tells me that their son gets through puberty with perfectly normal BGs and great A1Cs.

    Honestly, I used to think there was no way it would happen to us. We were sooooo dedicated and on the ball, but it still happens.

    It's puberty. It's diabetes. It's NOT you.
     
  16. moco89

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    Has he seen a dermatologist yet?

    Mine prescribed steroid cream, which helps a little bit. Since I have been receiving intravenous immunoglobulin (IVIg) for my other autoimmune diseases, my tape allergies (I am allergic to all tape) have improved significantly.

    I would do whatever you can to keep his diabetes "under control" (whatever that is). Consider Symlin, too.

    I have been type 1 for 20 years, this year, now, and my neurologist threw out the "diabetes-related neuropathy" diagnosis at me recently, even though I actually happen to have two diseases that cause neuropathy. She says everyone who has been type 1 for 20 years has neuropathy. We really need Cebix to come out with Ersatta (C-peptide) soon, to change things some.
     
  17. Ali

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    This is one of those tricky areas, because lots of stuff causes many of the issues T1s see but most people are not monitored as closely as T1s. I have been dealing with this disease for over 40 years and I assume I have stuff going on that we just can not see and that is what I work on, keeping the progress of the disease way behind my natural aging, and reminding myself that other folks without T1 get lots of stuff. How does she know you have neuropathy? Are you symptomatic? I do not think I have that issue, or if I do no one can detect it. So it may be that all T1s by 20 years have some neuropathy but it may be irrelevant as the progress is so slow that the person drops dead from other stuff before they are dealing with the issues from neuropathy.:cwds:ali
     
  18. moco89

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    I don't think I am symptomatic, diabetes-wise, although it is hard to tell. Basically, my neurologist is pretty sure I have chronic inflammatory demyelinating polyneuropathy (CiDP) because I failed some motor (muscular strength) tests, even in my arms (biceps), in the neurologic examination, about a month ago. In addition, my reflexes are not normal and I get neuropathic pain (occassionally) which appeared around the time I was diagnosed with CIDP. In addition, the neuropathic pain is in more unusual places than my toes/feet/legs. It includes my shoulders, my spine, and across my arms, which is unusual for diabetic neuropathy.

    I think she just calls it diabetic neuropathy to slap on another diagnosis, even though it is likely true. I also saw a neurologist who was "world-renowned" in neuropathies, particularly diabetic neuropathies, when the autoimmune autonomic neuropathy was assumed to be diabetes-related, and at 17 years post dx, he said I had pretty good reflexes for having diabetes as long as I did. But, that really isn't saying much as he sees a bunch of messed up stuff, even though he knows what is normal and what is not.
     
  19. Ali

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    Sorry I should have read your signature! Thank you for taking the time to explain so fully.
    Ali
     
  20. Jacob'sDad

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    Thanks everybody for welcoming me back and the great advice. There are some posts I should respond to individually here but I was just so freaking busy this week. I will try to get back on sometime this evening.

    Jacob is at D-camp this week! He went last year and just loved it. I made no real changes to his settings and mostly I just want to confirm that he checks himself often, boluses every time he eats or needs a correction and changes his sites on schedule. Camp will be a great opportunity to get these things right because I don't think he can get away with missing any of this stuff at camp. Once he gets back I will look at his log and pump history and see what we have got. A camp week isn't a typical week, but hey, it's a place to start.
     

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