Where do I go from here?

Type 1 and LADA
1

Hello everyone out there! I just joined this site, actually, I just found out about the DOC from my new friend and coworker 2 days ago. I think it was fate that he and I met. He has opened my world to the DOC, and though I am tentative and shy, I see that if I do not participate, I am the one who will lose out, no one else. So here I go...

I am 37, was diagnosed with Type 1 diabetes back in 1994... and keep thinking it was just yesterday. Someone reminded me the other day that is has almost been 20 years... that thought scares me, based on what I have to write here today.

Anyways...

The day I was placed on insulin, in fact almost every aspect of my appointment with that Endo back on the Tuesday before Thanksgiving of 1994, I can remember. Perhaps because it was such a bad memory, perhaps because of the words that flash into and out of my mind like scenes from a movie, or perhaps because almost 20 years later, I am still in denial, still mad, and not ready at all to laugh at this, deal with this, or figure out how to handle it. Mind you I need to say, there were times that I was in control, and I have spoken to others in clinic who ask me, what was different then than now. Different, nothing, except that it was new and seemed easier... it was my honeymoon. I had not had so many negative interactions, negative experiences with people, and never felt so mad about this disease as I feel today.

For some background: I had a 2 year honeymoon period, that was interesting. I have been on 3 separate pumps to date. I have used several different meters, injection sets, sites on my body, tape, test strips, you name it. Here is something that makes me extra special... most anything that could go wrong with these things, it happens to me.. I am a magnet for "issues" - tape issues, skin prep issues, reaction to plastic under my skin from the injection set, injection sets popping out of my skin, large red squares or circles from tape (those are quite attractive), liquid adhesives, regular adhesives, band aids, non-latex tape, latex tape, alcohol, ... think of it, I have tried it and either have a reaction directly on my skin or underneath (pain). In the last few months I have encountered a very unique category... those with Lip-atrophy... I am imploding, literally (ever wanted a tummy tuck, diabetes created one for me on the upper side of my belly button) - it is quite attractive. Oh, and another is starting.. Perhaps I should not look at the negative here... maybe if I put inserts on my ■■■, it would shrink it? I really could be on to something here. The new wave of plastic surgery for the future.... NOT

So, here I am a mess, physically, and quite honestly mentally (because knowing I am failing, is just as bad if not worse than failing and seeing it on the meter screen - that high number - or the hole in and I my stomach everyday. I simply cannot get myself to test regularly, to even remember sometimes to take a bolus, (despite the reminders I have on the pump, despite the connection my pump has as a meter remote - how much easier can that be, despite the fact that I will measure food and put it in a plastic bag and write the CHO's directly on the bag and calculate the number for that portion size... i just eat what is in the bag... it's like i never noticed the writing or if i did it must have been just an advertisement! Once I wore a watch with 7 alarms on it... I am great at dismissing alarms. I now have an iphone with that atomic bomb noise set for my reminders... dismiss, plus my boss jokingly threatened my job if I did not change that sound yesterday!!!

I have asked for help from my diabetes team, i truly don't get any. "oh, send me your numbers, email or fax them" I have even tried follow up calls, emails, and dropping by... NOTHING. They get lost, or "Oh, I was so busy, I must have missed it." Why do I make the effort to track, if you aren't going to help me and read them? You tell me to track that this info will help you... USE IT THEN Jerk-face.

So, I ask of anyone out there... I need a jump-start, I am lost... cannot get the engines running and I need help. I don't know where to start, how to start, when to start (oh, because if I don't start at the beginning of the week, somehow I am a failure in my mind). I have read the books, I know I am in burnout... I don't care, labels never helped me in the past, I need action steps. I just want to get help.

Help me, Help me, please.

2

First, welcome to the Diabetes Online Community! I've been in that situation myself, where I've felt so lost and like anything I do doesn't do anything. Been type 1 for most of my life since I was a kid, and now it's been almost three decades. The best thing in my world has been connecting with so many incredibly inspiring people in the online community, through blogs, Twitter, Facebook, communities such as TuD. Just talking and having those friendships has helped keep me accountable in times that I didn't feel very good about myself. We are here and have got your back. Drop a line no matter what you need, and I'm sure someone will be there in an instant with a helping hand (even if it is only virtual)! Thanks for sharing your story here.

3

This may not be helpful at ALL, but here we go... by your words, you are not only in denial but angry at your diabetes and in your mind you are a "failure". You need help but need to help yourself first, don't have the energy or the motivation for that kick start, don't have the right support or dedicated team. If you haven't seek therapy maybe you should consider that first, get to know yourself and what is preventing you from taking care of your body, from prioritizing your health, what is making you "hate" yourself (maybe a strong word), you need to let it out, grieve, learn how to replace negative thoughts and patterns with positive ones.

I know I'm jabbering a lot, but I'm doing so cause I feel you, I was there, and not too long ago! Only that my sugars were never, ever under control, let's say I never had a honeymoon. I tried different therapist and went from depressed, to angry, to despair, to feeling cold about the whole dying young (who wants to be old and wrinkly anyway?), until I finally found the one to give me hope, a Therapist who was also a T1DM. I believe with all my heart that, if not one that suffers from the disease, somebody that is trained thoroughly about it should help us cope, because they will never treat you like yeah, yeah, you got diabetes, get over it, start taking care of yourself and stop whining.

We are not failures, it is not our fault that we have diabetes, it is not easy keeping the balance, it is very easy to get jaded. Step1: love yourself Step2: everything else

4

Welcome!! Glad you found this site.

The good and the bad about living with T1 is that it is largely a disease of self-management. Some days, I find this a horrible thing, because it requires all the actions in my part to take care of it (and even then sometimes those actions don't work and I'm just stuck).

But I try to change my frame of mind and see this as a good thing. Because it's completely under my control, I don't have to rely on others to tell me what to do. I KNOW what to do to manage it and the tools I need to manage it are relatively easy to get. This is not to say that it's easy, because some days it is incredibly difficult mentally to do everything right. It's like this disease consumes me at times, sucks every freaking bit of energy I have. But then I come here and I see all sorts of other folks who are also T1 and dealing with the same load of poop that I am and it makes me feel better. I don't know...I read your post and I just feel...better. Because I've been there. I've had issues with infusion sets, I've had highs, I've forgotten to bolus.

We have all been there and at least I don't feel so incredibly isolated anymore.

I have always thought that it would be cool to live in a "diabetes island," where insulin was plentiful and everyone had pumps and every morsel of food was correctly labeled with the exact amounts of carbs. This is not exactly what the DOC is, but it's pretty darn close :-)

5

Felidia: I don't want to offer suggestions that you may have already tried. Here's what I think:

  1. Diabetes Sucks.
  2. Have allergy issues with tape, etc., makes it especially difficult for you.
  3. You are not a failure. You've made it through 20 years of diabetes, that makes you a big success in my eyes.

It really sounds like you're overwhelmed, so take it one small step at a time. First step: give yourself a round of applause for getting this far.

Um, BTW my current BG is 240+. I couldn't resist a slice of apple pie in the kitchen at work. Guess I'll run up and down in the stair wells for a few minuts and see if I can fix it.

6

Thank you for your words of support, I will be sure to stay connected. I think you are right, I have found a home. :)

7

You are right, I am in denial, angry, frustrated, annoyed... name it all, I am in that state. I want out, and I have been to therapists who specialize in treating those with diabetes and therapists who are more general. I know I am on the right road, I just have not found the exact stop. Thank you for your words of support.

8

Thank you for saying that you have had issues wit infusion sets, highs and forgotten to bolus... no one has ever said that too. I am not the only one. Thank goodness. Thank you for reminding me that there are others out there, just like me. Maybe I am not so "bad" and I can start to love myself and not punish myself so harshly, as I was reminded to do above. Thank you for your words and support.

9

It does suck. But, thanks for reminding me that I am not a failure. I am still trying to adjust to that statement you made that I am a success in making it 20 years... yes, I am alive, but am I well (complications wise)? We think alot alike... :)

Small steps are an excellent idea. You have empowered me to start here... to begin reaching out. For that I am grateful and will never forget for the rest of my life.

I am sure the apple pie was worth it... have fun running!!!

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Felidia, this is a nice post about how to start taking steps in the right direction

http://www.tudiabetes.org/group/simplestepsforhealth/forum/topics/start-small

also, if you search our forums, there are several discussions out there for those allergic to the tapes and dressings, lipatrophy, etc. I found when I started to have many issues with scar tissue from having this d for 45 years, was to start rotating to different sites I'd never tried. it was hard for me at first to try different places. You can do this!

11

There was also the time when I woke at 2 AM with a blinding headache and a high of 400+. So I had to correct, chug 3-4 full glasses of water and then try to fall back asleep.

I'd disconnected my insulin pump to make out with my wife and then forgot to reconnect. A night to remember for several things. ;-)

12

Felidia, are you willing to have take an opinion from the other side of the fence?

I am a T2. I was diagnosed in 1988 and went from diet and exercise, to oral meds, to insulin. That whole process took 10 years. You want to know something? I have been through some of the same issues as you. I have a nasty allergy to adhesives used in bandaids and first aide tapes. Makes me itch like crazy. I hate going for blood work not for the needle and the draw but because I know I will need that stinkin bandaide or tape.

I saw you list all the things that are going wrong for you and it so resonated with me. That is what makes this site so wonderful.

Here is my lasst dirty little secret. Well I guess its not a secret since I blog about it here on Tu.

I always maintained and very tight control. Been told by several doctors that I need to loosen up. It's okay to have a BG above a hundred. There were periods when I would have extreme lows (in the 20's) several times in a week. I did that all because I didn't want the side effects. Well, I got surgery last Friday to put in a dialysis access. My kidneys are done. A result of a combination of things including my diabetes but NONE OF THEM ARE MY FAULT. That may sound simplistic but it is true. No, I don't want to go on dialysis. I am NOT looking forward to that at all. Had to cancel a 40th anniversary cruise because of it. But I came here and told people on Tu and they were there for me and ready to help by lifting me up.

Stick with it Felidia...you can do it! We know you can.

13

Well....first of all you are not lost! You are here....and THAT'S a move YOU made. I may not know what from what in regards to pumps....but there's a whole slew of other people here who do, and who are here for you!
Acknowledge ALL of your accomplishments, no matter how small....after all, diabetes is no walk in the park. People who make slight of it are NOT the kind you want to hang on to....they have no clue! So....welcome to the rabble Felidia. You are in the winner's circle ♥

14

Hi Felidia,

Sounds like you have the knowledge, tools and incentives to make changes ! What you might be missing is a vision.

Can you visualize yourself as a healthy person, achieving your goals of testing, taking insulin, and keeping your BG in your range ? Doesn't mean there won't be times you're not, but if you keep that as your vision, you may find that doing the tasks to support that vision are easier to remember to do - even without the time bomb alarms !

And give yourself rewards when you take actions that are in line with your goals, congratulate yourself or brag about it here on TuD !

You're already off to a great start.

15

Love the Snoopy. He sure says it all.

We all feel bad, down, confused, depressed, etc.. I hate to admit it, but it is part of diabetes. You are NOT a failure; you are all of us.

Be cool. Use this sight. And be POSITIVE! Live long and prosper, Felidia!

16

Awesome! Yes you are on the right road :)
Maybe blogging here would be helpful? Sharing your goals and steps with the Tu ppl? Having a record of your accomplishments, however small, can make you look at the process a lil more positively. And maybe that way ppl can chime in and let you know if you are trying to take on too much for starters, have ideas and experiences they can share with you. Maybe I'll take some of my own advice and start blogging too lol

As other ppl below have said, we have all made our share of errors, until recently I would constantly forget to inject or to even bring my insulin along, diabetes was not a priority for me. You are not a bad diabetic, you have been making efforts, you are after all injecting, taking the time to set reminders, writing down the carbs in advance!!

17

First I want to tell you you are not alone. I too have had my share of highs (I’m 470 now and can’t find any reason why other than D being a pain in the ass taking the little energy I have) and lows. I have forgotten to blouses and even reconnect after a night of activity with my hubby. Like it has been said take it one small step at a time. Love yourselves. Remember YOU ARE HUMAN, that being said don’t give yourself a hard time when your bg is not where you may want it to be. Just do what is needed to fix the high or low and try again. Talk to us here. There is always someone here to talk to.

18

I feel so selfish for complainingut my “situation” when you re facing kidney trouble. I feel that your hard work and effort to keep good control, should NOT be rewarded by this type of result. Please remember to still celebrate your anniversary, those are the moments in life to remember. I pray you will be well soon. Thank you for your support and thoughtful comments.

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Thank you for your support. You are right, I need to be more positive.

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