Where do I go from here?
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 ass, 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.
Tags: 1, CGM, diabetes, help, lipatrophy, needed, pump, type
Replies to This Discussion
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Permalink Reply by Marie B on -
Felidia, this is a nice post about how to start taking steps in the right direction
http://www.tudiabetes.org/group/simplestepsforhealth/forum/topics/s...
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!
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Permalink Reply by Felidia on -
Thank you for the link, great advice. I need to believe I can do this and support and comments like this help remind me I can. Thank you for your time and support.
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Permalink Reply by brokenpole on -
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.
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Permalink Reply by Felidia on
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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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Permalink Reply by Linda G on -
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 ♥
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Permalink Reply by Spock on -
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!
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Permalink Reply by Felidia on
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Thank you for your support. You are right, I need to be more positive.
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Permalink Reply by Felidia on
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This reply is for Linda above...
Thank you! I feel so lucky to be among such treasured company. Xoxo
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Permalink Reply by MegaMinxX on -
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.
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Permalink Reply by Felidia on
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A vision, what a great idea. Thank you for that. I plan to write out some goals and make a formal vision for myself...this might be a great place to start. Thank you for this super idea.
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