I am terrified

By Yewfy Latest Reply 2011-04-02 07:42:06 -0500
Started 2011-03-28 21:31:00 -0500

I've been diabetic since I was 13 and am turning 23 this year. I am finally coming to terms with diabetes after almost a decade, but I hope it's not to late. I can honestly admit I've never taken care of myself, completely omitting blood tests and shots all together and only really paying attention to my health for short periods of time. My history includes more DKA hospitalizations than I can count on one hand and a ferocious will to not care. I went to the eye doctor last month and he pointed out a spot hemorrhage which he said will go away with good care and should not worry, but for the first time ever I am am faced, no matter how small, the first real evident long term complication of poor control. Blood tests confirm I have no liver or kidney damage yet, which is a huge relief. That eye appointment really got me thinking and since then I have been, for the first time, been making an honest effort to do good. I use a DEXCOM glucose monitor so I can see the trends of my sugars around the clock and be alerted when I come out of range. I am finding it hard to find a balance which I am embarrassed to say since I've had almost half my life to figure this all out. I know so much about diabetes, but I've just been stubborn. I am finally confronting all of these fears for the first time on top of concerns for my health I've never felt. I am hoping it's not to late to turn it around, that I haven't permanently damaged my body in my prolonged ignorance, and that I can finally take this seriously because I can no longer deny that diabetes will harm me if I ignore it any longer. How do you guys do this, so religiously? Are you fearful?

12 replies

melissa5786 2011-04-02 07:42:06 -0500 Report

I'm happy to hear that you're trying to get yourself in better health. That's all any of us can do. Try. I'm going to be 25 next month and diabetic for 2 years in July and I still feel like sometimes I have no control and I test 4 times a day and take at least 2 shots a day.

I am terrified all the time. I read the complications and see the long term affects and I get nervous. Which is why I try to have such good control over it. It's hard coming to terms with the fact that we all have a chronic disease, but it doesn't have to be terminal.

My story is different. I feel as if diabetes saved my life, so I've embraced this lifestyle head on and haven't looked back since. I don't remember my life before July 2009. All I do remember is that I was unhealthy and eating badly. And never working out. I'm a completely different person with completely different worries.

We live our lives according to blood glucose levels and medications, but we don't have to let diabetes run it. We can have control and the fact that you took that first step means so much. Don't harp on the fact that it took you so long, you finally got there. So now just focus on being healthier and getting it in control. You said you know a lot about diabetes, now just make it all part of your life.

And you have your DC family here to help you every step of the way.

roshy 2011-04-02 07:12:57 -0500 Report

reading your entry was like reading a chapter out of my book!! along with the DKAs and the eye complications i have this huge barrier which is preventing me to move on with life anf just accepting diabetes!!

But there is a bit of hope i thnk!! your 23 (same as myself) and you have youth on your side!! starting to change now will increase every chance in preventing these other complication from developing at a faster rate if they even do develop!! whose to say we are ever going to develop kidney or liver damage!!

As you said yourself, yo know so much about diabetes so now its time to put theory into practice and just watch the difference it will make in your life !! just even knowing that you are trying to take control will have such a positive impact on your life!!

And from reading your post it kind of sounds like your beating yourself up over all the mistakes you made in the past!!! you need to stop looking back now and just look forward!! diabetes isnt something that anyone can just take on and be the 'perfect diabetic' from the word go!!! these mistakes must be made in order that we learn from them!!! its all part of the process!! anyone who says diabetes is easy at the age of 13 derserves a slap in the face!!!

and your not alone!!!! thousands of people with the condition knows exactly how you feel so all i can say is best of luck in the future and keep loking forward to a positive one!!

23 is a good age to turn things around!!!

sc1boy 2011-04-01 22:29:02 -0500 Report

I am glad that you are getting in control and starting to take better care of yourself. Let us know how you are doing.

alisaespinosa 2011-04-01 15:41:45 -0500 Report

I struggle with the same situations there is a lot of times when I say hey I will just stop taking my insulin till I lose 3 or 4 pounds. Let me tell you it does the opposite after a few days you start going into DKA and once that happens the hospital pumps you full of fluids so that 4 pounds you just lost turns into 7 pounds gained

O'hla 2011-04-01 13:44:56 -0500 Report

It's NEVER too late.I actually live some times every 15 minutes, to every 15 minutes. You can always go forward to reach your goal. Just have goals. To me, my life is like brushing my teeth, habit. Form habits. Fearful ? Only for the other person, if I am not on my CGM, or don't have my meter with me..

Yewfy 2011-04-01 13:55:09 -0500 Report

I love my CGM. I cannot wait till insurance companies choose to cover these as if they where a necessity of diabetes management. I can't even imagine how difficult it would be to stay motivated without one. It truly is a life saver and I think every diabetic deserves the opportunity to experience to amount of freedom and release it offers.

Yewfy 2011-04-01 13:16:34 -0500 Report

Thank you so much for all the replies. To ALISESPONOSA, your reply hit very close to home. I have hid the fact that I've neglected my diabetes purely to stay thing for so long, and finally for the first time admitted to someone yesterday that this has been the root of my poor management all these years. I recently moved 500 miles away from home to go to school and just found a doctor close by that I am going to see as my regular endocrinologist and diabetes doctor and I am going to be completely honest about my history, which will be a huge relief for me because for years, doctors have come up with all these reasons that I have been so horrible with my control and have never truly known. I am excited to finally confide in a physician and have them know the whole truth so that they can help me coop with the real underlying issues I have with making this disease work for me.

The other day I wanted to relapse back into poor care, even if just for a week, because I noticed I gained a few pounds. I thought if I stopped for just a bit and lost that weight again, and then started over with better eating and exercising choices then I could avoid the weight gain. I came so close but thanks to boredom and the internet I discovered that I am having reaction called insulin induced edema. I experience it every time i try to get back on track, and every time it is the main cause of me stopping my care. Bloating, puffy legs and feet, weight gain. But this is a common reaction that diabetics with poor management experience when their body starts having better control after a long period of time. It apparently goes away and the process can even be sped up with a diuretic since it is just water weight. I've never given myself a chance to work through this part and always quit out of fear, but this time I am determined to change my eating habits and see a doctor and work through this. You can't always expect to start feeling better right away, and there may be some negative side effects of getting yourself back on track with your health, but it doesn't last forever and if it means I will live a longer healthier life than I think I can handle it.

It is amazing though, the amount of lows I've been experiencing as a result of actually staying within range (80-120) throughout the day. It's getting sort of annoying, but I am sure my new doctor can help me tweak my regimen since the one I have now is meant to aggressively keep my diabetes in check, since I was so neglectful. Not anymore. And no weighing scale is going to scare me back into submission. No way.

alisaespinosa 2011-04-01 07:06:46 -0500 Report

I would like to say that I have been in the same situation as you during hs I decided to tell myself I wasn't a diabetic I wanted to do and be like everyone else. I was even diagnosed with an eating disorder called diabulemia. It is when you let your sugers get super high and go into DKA to lose weight. In hs I was a dancer so I needed to stay really thin. In my senior year I was hospitalized 35 times in one year all with the diagnosis of DKA. It finally took me until I was 24 to step up and take care of myself. I know have gastroparesis which causes me to not be able to eat. I throw up everyday multiple times. I now a port placed in my chest so I can give meds and fluids through iv everyday I do this at home and have been for almost a year. I cant work im on disability which gives you almost no money. So if you take anything from my story start taking care of yourself before it gets any worse

roshy 2011-04-02 07:20:45 -0500 Report

i was also a breif diabulemia sufferer!! i thought it was amazing how easily the weight just fell off. and then as soon as i started to take the needles again i would hate myself!!!

im very sorry to hear about your story but i think thousands of young female diabetics are doing the same thing for the same reasons and dont even consider the consequences . . . ..

i admire your honesty and bravery for sharing your story!

jayabee52 2011-03-29 11:44:55 -0500 Report

HOWDY Yewfy!

First off, I want to say I'm glad you have no major complications from your ignoring your condition for 10 yrs. You got a wake-up call from your Dx of the spot hemorrhage. It sounds like it got your attention and that's good!

Your story is a lot like mine, except I was a bit more knot-headded.

I have developed Diabetic Neuropathy which burns in my calves and feet (very painful), and tingles in my arms and in my fingers. I also have Chronic Kidney Disease, and have been on Dialysis for about 10 mos, and then learned my kidneys, while not at 100% of function, they function well enough to not need dialysis for the immediate future, but if I lose any more filtration, I may have to go back on dialysis permanently if I want to continue living.

You ask how we do this so religiously? and are we fearful?

I can obviously only answer for myself, and maybe only partially for my bride "Jem".

I'll tell you what happened to me. When my kidneys shut down I ended up on my bedroom floor semi-comatose. I was there for 5 days even though I only sensed the passing of 1 day & 1 night.

My son found me and took me to the ER, where they told me my kidneys had shut down and I'd need dialysis.

Long story short, when I got out of the hospital after 3 weeks, and started on dialysis 3 days a week, 4 hrs/day I thought my life was over —- that I was a dead man walking —- I had been divorced out of a 25 yr marriage a 5 or so yrs previously and not having any good fortune finding another life partner. And now with dialysis, I felt nobody would give me a chance. So I had no expectation of happiness in the future at that time.

I remembered the semi-comatose state where my kidneys weren't cleaning the poisons from my bloodstream, and thought that this would not be a bad way to go. So I talked with the clinic's social worker about not returning to dialysis and letting my condition "take" me. She said that nobody would blame me if I took that course. But on my own, I decided that I'd not follow that course. I decided I didn't want to give any of my 3 sons a bad example when life didn't go their way. After all I still feel that I can provide an example to them, if nothing else.

So I embraced life, such as it was. And because I did I was blessed. I had stopped actively trying to find a life partner on dating websites, but I still had my profiles up. One day I got an email on Dating4Disabled. We hit it off online, and then on the phone, and then in the real world.

Joy & happiness returned to my life. I eventually asked her to marry me and then moved the 500+ miles north-west to be with her and we married.

Our relationship lasted from Nov '07 to July 23 2010 when she passed from this life. She was a fantastic blessing to me in very many ways. And I believe her long time friends that I was a blessing to her also, in very many ways.

So, to poil it all down, had I given up on life when I was at my lowest, I would not have known my "Jem" and the blessings she brought me, nor would she have met me. We both knew that our relationship would likely be shortened by our "medical challenges" (as she laughingly called them —— and she had many challenges) but that didn't stop us from taking hold of life and enjoying each other's company.

SO! to answer your question from my pespective, I do my best (do I ever slip up? —- Yes) so I can be ready for the next part of life, whether or not someone will be in it.

To answer you from what I believe would be "Jem's" perspective: Even though she had many many "medical challenges" —- Blindness @ 14 due to retinitis pigmentosa, CHF, COPD, RA, Lupis, women's reproductive problems, diabetes. Fibro, ( & some I've forgotten by now) for her life was worth living. Worth hanging onto, and she took the best care she could, to hold tight to life, and never give up.

That is why I take care of my conditions (you can read them in my profile) as good as I am able.

I pray God's richest blessings be with you and yours, Yewfy

James Baker

GabbyPA 2011-03-29 08:22:26 -0500 Report

I get afraid every time a new ache or pain shows up. I worry and wonder if it is my diabetes or just my age. So I go and test or I go and look at my meal plan again. I tweek and work things out because I don't want to be in a wheel chair down the road or blind. I need to keep my independence and that helps me do what I need to do.

I make it sound easy, but it's not. I don't always do the right things and even sometimes when I think I am doing the right thing....it doesn't work out so great. So I keep trying. Now, I have only been at this for a few years. 10 years is a long time to be dealing with it. It either becomes a habit or a pain in the butt. I suppose it's our choice as to what it's going to be.

sc1boy 2011-03-28 22:35:25 -0500 Report

YES we are fearful of everything that might and can happen, but we have our lives to live and the loved ones that love you to hang on to and help us through one day at a time. It is hard but it can be done just look around and you see people changing things all the time from someone with cancer to someone who is smoking it can be done.All you need is some good helpers and docs. that can lead you in the right direction.