How Can I Get Where I Need to Be? I HATE THIS STUPID DISEASE

Diabetes Technology Insulin Pumps
#1

Hello all…


I don't know how exactly to breech this topic but to really just dive right in...

I'm 25 y.o.... been diabetic since the age of 9. Pumping for over 10 years now. But struggling like crazy... and always have.

My problem is this-- I know the end results. I know the risks. I know what dialysis and amputation and everything entails. I know. I've seen. I've treated. I've woken plenty a diabetic from the "LO" meter reading. I've seen plenty an infected leg. Trust me. I work in medicine and will start school this May to pursue the dream of being a physician. But I'm the worst patient. I know that. One field I would never consider-- endocrinology. Done. Don't get me wrong and please don't patronize me-- I know I've got plenty of fault.

The problem is I JUST CAN'T BRING MYSELF TO TEST, BOLUS, AND DO WHAT IS RIGHT!! I don't test, and have a long history of doing so. I hate being consumed by it 24/7. I hate needing to plan everything and manage everything on my own. There are very few ailments (chronic, even) that require the patient to do ALL THE WORK. I sadly find relief in a visit to the ED with admission. Why? Because I get a break from it all. I might feel a little crappy. But I get a break. I don't want to tick anyone off, but mild to moderate cancer seems a better bet. Why?? ... You know what's going on... the doctor manages the problem at hand... remission exists and even if it returns, the patient still got a break... cancer pt's are given some sort of "credit" by the public... diabetics are just "fat" ... diabetics can "control" and "cope" with the problem... cancer patient's don't have some magical blood count number that they have to check every few hours and make sure it's perfect... cancer pt's have support by the medical community... the list goes on and on... yeah, cancer kills... but in my opinion, in a far less cruel and mysterious "maybe gonna happen but it's ALL UP TO YOU" kind of way...

My list there goes on and on.

I've tried to do well. But amid it all, bad blood sugars still creep in and tick me off. My A1C is 12.1 now... my highest being in the 14+ range. I feel better at 400 than I do at 100. 87mg/dl the other day made me feel like a fluttering blob of a body as though I were 35. I hardly test... maybe once every 4-5 weeks or so. I go by how I feel. Begin to feel high-- bolus. Feel low (hardly happens)-- eat something. DKA is my history. Lows only once and it was my fault cause I ignored things and went to sleep (in college). :/ I hate to test. I hardly bolus until I get thirsty. To do better just makes me feel worse in general. I need to take care of others and my job requires me to be physical at times (lifting patients). I can't afford to "deal with the pseudo low until my body re-adjusts" type of feeling. That, and I hate that feeling.

I've tried everything I know. I've tried keeping meds in weekly pill boxes to help me remember. I've tried a pink glucometer to make me excited and/or happy about testing. I've tried gold stars, log books, "kudos calendars" ... you name it. But it only lasts a week or so. Then I'm back to my depressed opinion again. I'd rather ignore it.

But I can't.

I want to have a baby someday. I know the challenges there. I can't be a doc someday on dialysis 3x a week. That doesn't work. This disease ruins me. And people say "control it...not the other way around" and my take is that if I'm consumed 24/7 by managing it, then IT IS CONTROLLING ME!!! I'm full of built up rage.

I don't want to be a mangled mess of cut-up parts, a monster of infected-ness, going blind "doctor" someday. I really just want to be rid of this crap.

The only hope I feel I might have is a CGM... which I'm working on (by lying to my insurance about "lows" cause that's the only thing they'll agree to)... cause then I would "code" the CGM by a test 1/day... cause it would be worth it... cause I could, for once in my life, be in control.


And for anyone who says (including my docs who apparently don't have a decent education in immunology) that a cure is near... take a hard lesson in the true root of T1 IDDM and the truth will amaze you-- there WON'T be one anytime soon...

Sorry to half rant, half rave, and nonetheless ask for help. Don't know where the heck to turn right now... except to ask God for a disease "exchange" for something the doctor would manage and I wouldn't have to...

I look forward to the input. But please, don't tell me "you oughtta know better."

Thanks You.
#2

WOW!!! why are you not testing, true diabetes is a chronic disease BUT YOU CAN MANAGE it… I see that you said you want a baby one day that CAN happen but FIRST you need to start taking better care of yourself. I test 8-12 times a day to keep my sugars im check, no i don’t like it but if i want to live and stay healthy these are things i have to do… sounds like you are in denial, don’t be…diabetes simply makes you do what everybody else (non-diabetec) should meaning eat right, exercise and taking your meds…everyone does not get complication from diabetes if you do what you are suppose to do trust me it will pay off…I’m 24 years old been diabetec since i was 6 no complications (thank GOD)…

I wish you the Best!!

#3

and the reason you feel fine @ 400 is because your sugars are so use to being high, once you get in control trust me you will feel PERFECT @ 100… @ 400 i think i feel awful and have to do something to bring it down FASt

#4

Okay… try carrying a 200+ pound person down the stairs when you’re blood sugar is 40…

Then come up with a suggestion of how I can get things in control…

My job isn’t a sit-down office job… thus, my control and care is a swirling vicious circle…

#5

Hi, I’m right there with you. I hate this disease and how it makes me feel. I’m right now stuck at 300 and have bolused to correct it for the last 6 hours without any relief, it just keeps going up so I feel like sh*t. I give up sometimes, but I have to keep at it. I too plan on becoming a physician and am currently working on my doctorate. I work long hours already and barely get time to eat much less plan things out. I know that this is something that I have to change and believe me it’s a daily struggle. But for me, I’ve seen this disease take my mother and my grandmother and my uncle. I’m third generation, I don’t want to have it take another generation from our family. Knowing now what we do know about diabetes compared to when my mother died when I was 5 years old is tremendous. Just the technology that I have an insulin pump and it’s been a mere 23 years since her death just leaves me hopeful. I have studied immunology extensively and though there’s not a cure in the near future, hopefully, we can have one in our lifetimes.

You mention cancer, I have a 8 year old adopted sister that at the age of 4 was diagnosed with cancer. I wouldn’t trade places with her if I could. Cancer is a long, painful journey that you pray ends, but in fact, nearly 4 years later, she’s set for another surgery to remove another portion of her thigh to remove another tumor. This little 8 year old that should be running around, playing dress up with the girls in my neighborhood instead gets to sit through chemo treatments and multiple surgeries. I am truly thankful that I have something like diabetes where I can do things to control my disease. I may not be perfect most of the time, but at least, I have another day to try and make things better. My parents are hopeful about my little sister, but after removing yet another tumor only 1 year later, we can only pray. Cancer isn’t a disease where it’s over in one day, but it’s a lifetime worth of pain.

I hope you can get the help that you need. I wasn’t getting the results that I wanted with my doctor so I switched to a new one. He keeps me accountable.

Elizabeth

#6

The thing about this disease, despite all of the horrible possible outcomes, the testing the pumping, sticking and poking, is that there “can be” a positive outcome. The way I have handled this is to look at the disease positively, what I can do for my body in change in life style, and how I can embrace every moment in life. The testing and blousing should become routine like brushing your teeth etc. I don’t think about what “can” happen, we all die, ■■■■ happens. Yet the beautiful thing about this disease is that it pushes us to adapt to healthy lifestyles, and you can turn this around I know you can.

and in terms of rather having cancer, if i could choose to have any chronic illness in this world, I would choose to have Diabetes. In many ways we are very blessed that we can determine what kind of life we lead by taking control. There is no death sentence.

#7

Wow, CJ, you did a really good job on expressing your anger and frustration! And that’s exactly what I think you should do, because no, you don’t need anyone to tell you what to do, you know what to do. And you don’t need anyone to tell you what the results will be of not doing it, you know that to. But you ARE asking for help…screaming for i, actually. And I think you need to get through that wall of anger before you can settle into doing what you need to do for your diabetes. My suggestion would be to get some therapy from someone who is aware of the emotional issues behind diabetes management, because other things are going on here and you need support in working through those things whatever they are.

#8

I really hate you feel this way, I’m sure if you ask any cancer patient if they would rather have diabetes or cancer they would say give me diabetes any day…I pray that you take control of your diabetes…

#9

The key to control is CHECKING YOUR BLOOD SUGAR… you can’t go by the way you feel that’s just crazy…

#10

Don’t be crazy TAKE CONTROL OF YOUR LIFE, IT’S YOUR’S…you can live a LONGGGGGGGGG happy life with diabetes…and diabetes is not a stupid disease not that i LOVE having it but I know i can manage it and live like everybody else… I hope you get it together

#11

CJ

I have been where you are. I knew the complications, I knew what to do…I just didn’t do it. I was too lazy to go to the pharmacy, or test or bolus or eat right. When I would run out of insulin or testing supplies, I did not test or take insulin. It sounds simple, but I just did not want to do it. Though I am doing better now, I can’t help but feel the nagging guilt of what I put my body through and what the future holds for me.
You are worthy of a better life and you deserve to be healthy. See a counselor and start simple. Try testing and bolusing for breakfast, then once that is routine, add lunch and so on. It will take time to make it habit. It will not be easy or fun, but you know what to do. Good Luck!

#12

I’ve SO been where you’re at right now. And I get to that point periodically still sometimes. The last thing you need is someone preaching at you about how you should test more, or start taking insulin more, etc., etc… You already know all that stuff. I think the emotional toll diabetes takes on us goes unmentioned a lot. Especially the guilt and anger that come with diabetes.

Another poster suggested trying to see a counselor who specializes in chronic illnesses. I agree with that, if you’re comfortable making that step. I’ve had counseling before, and it has helped me SO much. Sometimes, I think you have to deal with all the mental stuff, before you can deal with the physical parts of diabetes. Also, another thing that helped me, especially when I get down about how I have to deal with all this extra crap in my life (testing, taking shots, eating better, etc.), was to just think of it as one of those necessary evils we have to do, like using the bathroom, showering, or brushing your teeth. When I think about it that way, sometimes it doesn’t seem so overwhelming.

Just remember, all you have to do is do your best, and that your “best” is different on different days. If today your “best” is posting on Tudiabetes for help, than you can be proud of that step. If tomorrow, your “best” is checking your BS once, than you can be proud of that too, and slowly let go of the diabetes-guilt. Please know that there are people that support you, though, no matter where you happen to be on the “diabetes control spectrum”.

#13

Honey, you do sound so depressed. Please get some help. You will NOT be able to take care of others as a physician; nor of a future baby, as a mother; if you do not take care of yourself first!!! and Taking care of yourself does invovle testing. YOU are your own science experiment,. Take very small sterp and do not look at each blood glucose as a “judgement” of your value as a “good” or “bad” person.

God Bless,
Brunetta
Type 1 42 years

#14

You look after your career, friends, family, bank balance, car, clothes pets,…
What about your HEALTH !!!
Want to see your grandchildren…

The video below is very encouraging, from University UCSF

http://www.deo.ucsf.edu/learning-library/videos/2009-video-guzman.html.

Also listen to these guys rant and rave (they will put a smile on your face)
http://diabetespowershow.com/

good luck
micheal hutch

#15

C.J., You remind me of my brother some years ago. He was T1 from age 19 to 58 (died then). He fought getting his BG down and said he “felt better” when he was 300 and “felt bad” when he was at 100. He did test but not often. What changed his behavior? He and his wife had to take in two grandchildren and raise them. He loved them enough to want to live for them. The only problem is, it was too late. His complications were too bad for him to beat and he died after a surgical attempt to avoid a leg removal. The point here is you are only looking inward and I understand that. As a T1, I am not even a “good” diabetic tho my A1c is now in the mid 6 range. Managing diabetes is hard. It is harder than many, but not all, chronic diseases. It is not just taking a pill or even just doing exercise. Or doing the many therapies like for CP or cystic fibrosis or MS. Those and many other horrible chronic diseases are just as hard to manage in other ways. But diabetes really affects your entire lifestyle and the daily choices you make. (food, activity, meds, social interactions, emotional status, etc) All are affected every day because you are trying to maintain a hormone (insulin)/ BG ratio that allows you to live. You resent that. So do I. But I am getting better at working thru that resentment.

I don’t have advice for you but I could ask you to imagine certain possibilities in the future. Suppose you do find a wonderful significant other and suppose you do have a child. Will you be healthy enough to take care of the child every day 24/7 and live to see that child through kindergarten, elementary school, high school? Never mind college because at the rate you are going, you likely can’t make it that long. Suppose you imagine toughing out some changes that would halt or at least slow down your complications? What might that future with one or two kiddies be like then because you invested time in your health before they were born?

#16

I replied to the wrong section below. It should have been written here. still trying to figure out this system. sorry.

#17

I dont understand why they dont just give you a cgm (insurance). I would think if they give you a pump why not give you a cgm. Insurance is sometimes something else. I think you should automatically get a cgm if you are in a profession that requires that you not having any surprises. Forget having to pettition for the lows. Its like saying I want to get in a bunch of wrecks so I can have car insurance. I would think if you can avoid one low during work is worth giving someone a cgm. I am a type 2 but I always get lows because i dont see them comming fast. I am talking about 60’s so not too bad. I would be willing to fork out the money so I could get a cgm so that I dont have surprises.

So I think if you want to be a physician maybe you will have to do the crap work now to get to be a physician and then if you cant get a cgm then just buy one. I would fork up 2000 myself to feel better. I have a flex account at work that i can contribute up to 5000 a year and then its spread out. So i wonder if a person could get a cgm directly from the company without having to go through insurance.

#18

Your still young and you still think your invincinible. That will start changing in the next couple of years, or it did for me anyway.

Doctors and nurses are routinely the worse patients. There have been many times Ive had doctors Ive known, respected and thought were brilliant come into my ER sick. Once you get them undressed and look at them and then look at their lab work you almost start to cry. Its actually quite common.

Your probably depressed. Most diabetics, myself included, have it at sometime. Get some blue skys, exercise and talk to someone you trust.

You cant take care of someone else unless you take care of yourself. One of my professors said that to me as she kicked me out of a class for having a blood sugar of 8 in the hospital. I was pissed, but its 100% true.

#19

You and others may not like what I put here next : …others did not ask for my input …you did …Get off it Sweety, what ever it takes , otherwise it will take you …be committed in making " it " work !
Do I want to be treated by a Doctor, who does not take care of him/herself ? …a big NO !
signed : Living with diabetes for over 27 years , breast cancer survivor since 1984 and a few other medical problems , I won’t get into .

#20

You have every right to feel angry, upset, consumed, and controlled (among other feelings) by your diabetes. Frankly, IT SUCKS, and I think we all know that. I wouldn’t be surprised if you also feel burned out, too. Let’s admit something else: It’s tough work managing diabetes, and you’ve had to work at this longer than some people have worked at their current job! I can relate on one end, since I will be starting my 17th year with diabetes on the 22nd.

Now that we’ve established that it’s OK to have these feelings, the big question is: What are you going to do about them? While I did see someone suggested antidepressants, I would also encourage you to try some cognitive-behavioral therapy. I have used it to help me in the past. If you can learn about your thinking, you may be able to deal with those thoughts more effectively. I recommend the following books, which you can find on amazon.com: Feeling Good: The New Mood Therapy, The Feeling Good Handbook, and Ten Days to Self-Esteem. All are by Dr. David Burns, a respected psychiatrist who maintains that talk therapy, properly applied, can achieve results as good is found with drug therapy. Considering Feeling Good came out back in 1980 and is still being published (and revised/updated), I’d say it’s stood the test of time!

No matter what, remember, it IS ok to hate diabetes, but consider that hating diabetes and all the stuff that goes along with it ALSO takes up a lot of time, energy, attention, and more, leaving that hate and lack of action in control of your life.

Angela