June blog topic #2: It’s Complicated

I was diagnosed back in January and don't have any complications (at least that I know of) yet. My main fear right now is that diabetes with interfere with my ability to have kids. I know women with type 1 diabetes have successful pregnancies and healthy babies, but it's still a fear.

I was dx'd in '74 at age 21. I come from an extended family full of type 1's, and spent my childhood watching 15 of them die long slow deaths from various complications. So, for at least a decade I was so totally paralyzed by fear that I was nearly dysfunctional.

12 years ago I developed severe retinopathy resulting in a detached retina requiring immediate surgery and then lying face down, not moving, for 7 days as it healed. I year later I had a similar surgery in the other eye to stabilize it, again 7 days face down. Today I have 20/30 vision in one eye and 20/20 in the other (with corrective lenses). I did lose a lot of peripheral vision so I no longer drive. Also some troubles seeing in the dark.

I've been hospitalized 3X for DKA.
18 months ago I suffered acute kidney failure following two cardiac arrests after surgery for ovarian cancer. I was on dialysis for 14 months. There are varying opinions as to whether this was caused by the db or not.

I've had frozen shoulders, trigger fingers, and am still dealing with carpal tunnel syndrome, which I've had for decades.

I take meds for restless leg syndrome, hypothyroidism, cholesterol, depression, insomnia, osteoporosis, and edema.

Yada, yada, yada - so most of the things I feared have happened. And you know what - I still consider the quality of life to be GOOD. Yes, you can still live well with complications, and a lot of people here are doing it.

A couple years ago I was visiting a friend in a hospital and as I was leaving I saw a sign "diabetes support group - room A". I stopped in to see what it was like. After we got to talking, the moderator said, "oh, I'm sorry, this group is for those without complications".

Well, good grief, Kathy! Some support group. Maybe they should start another support group for Diabetes With Complications Only. In the meantime, your handling of complications is inspirational. Cheers!

I've had Type 1 for over 20 years and have no known complications. My fears are mostly the fact that although I've always had decent control and put in the effort, I don't have stellar control, and the fact that I've had diabetes for a fairly young age. It scares me that by the time I'm 70 I'll have had diabetes for over 60 years. I've had to stop reading a bunch of the sites that advocate "You will die a slow, painful death if your A1c is over 6!" and stuff because it makes me feel horrible. My A1c has never been under 6, and it makes me feel like I'll be dead by the time I'm 40.

I feel incredibly lucky that I don't have complications, but I also get more nervous with each passing year that something will crop up.

On a related note, I've recently started a blog about living with diabetes and vision loss. I was born legally blind so it's not exactly the same as experiencing it as a complication, but I know a LOT of people really fear losing their vision. I'm hoping the blog sheds some insight into this area as well as the fact that losing your vision doesn't mean you have to lose your independence or stop doing anything else (aside from driving). For me, retinopathy is actually the only complication I don't fear at all. I have enough vision that losing the rest would still take some adjustment, but blindness is also the only complication that isn't life-threatening in some fashion.

The complication I fear most is heart disease/a heart attack. Not something most 30-year-olds even have to even think about ...

Having said all that, I don't really think of complications that often. It's a balance between thinking about them enough that it motivates me to work hard at control, yet not enough that I spend undue energy worrying about something that may (hopefully) never happen.

i'm 49 years old, a T1 and have been for 37 years. my complications started years ago, but i ignored them, as much as i ignored my diabetes in general. they started with pains in my legs and feet. severe cramping in my calves. i suffer from peripheral neuropathy, have had laser treatments many time due to retinopathy. in 2006 i had an aortic biphemoral graft and in 2011 i had triple bypass surgery. this was a direct result of my lack of diabetes care earlier in my life. i take meds for high blood pressure, high cholesterol and hypothyroidism. i have a frozen left shoulder right now, and my right was frozen about 10 years ago. it is starting to feel as though it may be starting to freeze again. my kidneys are okay, but i see a nephrologist just to keep on top of things. i have had both hands operated on for dupuytens contracture, which is common in diabetics. some of these complications you cannot control, like the frozen shoulder and the dupuytrens. however, there are a lot that can be delayed by doing your best to keep your bg's in the normal range as much as you possibly can. i must say that even with all of this going on, i consider myself one of the lucky ones! i have never been depressed and i don't use diabetes as a crutch. i live my life! i have 3 wonderful kids, 2 awesome grandchildren and a husband who loves me despite everything! i plan to be around for a very long time, even if that means being in a wheelchair with a guide dog someday!

I've read over some of your posts and I wish you all well. I've not had any complications except my eyesight changing, but I was diagnosed recently. But I'm crossing my fingers that I'll learn to be strict with myself right from the beginning. So far, my diet is going well, and I'm getting exercise. Now, if I can only get fitted for glasses....

Good luck all!

I was originally diagnosed because my vision started deteriorating. Once my blood sugar was down where it should be, my vision recovered completely. I would say the odds are strongly in your favor.

Every fear that you can think of has gripped me since the day my doctor told me that I was diabetic. During my life I watched as my maternal grandmother lost her battle to diabetes. First, they removed a foot and eventually all her limbs. Slowly she became blind.

This fear has me to the point that I don't want to even believe I am diabetic. For now, I able to take pills and my blood glucose levels have seemed to stabilize since I added cinnamon to my daily intake. Still, my doctor has been telling me I need to take insulin. I don't believe him.

To me, insulin is the last step. There is no hope after you start taking insulin. You will take it until the day you die. In the event of a catastrophe, you are stuck. You have no way to control your b.g.l. Why does my doctor want me to take insulin injections when my A1C was 8.9 at my last check up which was in December of last year? Are the pharmaceutical companies paying him to prescribe insulin? There are people with higher A1C numbers and they don't take insulin shots. Also, there are other ways to bring that number down; more exercise and better diet. So, why does he want me to jump to the end stage?

Is this all part of my denial because I don't want to end up like my grandmother?

17 years and not a single complication yet, well none that have been found.

I guess my biggest fear would be eyesight damage, or being stuck on dialysis or severe nerve damage. All have the power to significantly impact upon quality of life. I have trouble enough staying upbeat and fighting the good fight without all that going on the background...

:)

I also fear that if I did develop serious complication I would be much more inclined to give up on life. E.g if I was blind, had trouble walking and had to spend hours hooked up to machines to wash out my blood, I can't say that I would want to live like that??

RobtJr60,

You should read Dr. Bernstein's book. Not only would it be likely to ease your fears, but more importantly you would see that the so-called "normal" progression of this disease is not inevitable or necessary.

A very wise person once said on another topic, "Life is change. You don't have any choice about that. The choice you have is whether you manage change, or it manages you." D is similar. You don't have any choice about having it. What you do have is the ability to choose whether you control it, or it controls you. 70 or 80 years ago you really had no choice at all. Today you do.

I have known many type 1 diabetics, but there are two in particular that really relate to your experience. One, my wife's brother in law, was fearful and defiant and always did the abolute minimum. He ended up going pretty much the same route as your grandmother. The other was a good friend. He has always managed his D aggressively. He is now approaching 80 and still all there. And remember, these are type 1 -- far worse than what you and I have.

It sounds as if you don't have any vislble complications yet. So you still have time. You do have a choice.

Good luck, and remember that this community is full of people who have been down the same path ahead of you and who know, as no one else ever can, what you are dealing with.

Thank you for asking, Emily!

My kidneys are kind of in question. That was the main factor in my getting my pump, so in a way, I am kind of glad it happened. I wanted a pump long before I was approved for one. It will be paid for in September!

Now, were you to ask about relationship complications attributed to diabetes, I could write a very long essay on that subject! For now, the short story is: "It's Complicated!"

Brian Wittman

David,

Thank you for taking the time to talk to me. Just knowing another diabetic is a huge relief. I'll take your advice and read Dr. Bernstein's book and I'm going to be more active in this online community. It will help me feel less alienated and in helping others, if I can, I will become more blessed. Thanks again.

Robt.

Robert,

You are most welcome. Being able to discuss issues with (or just talk to) others who are dealing with the same thing is a tremendous help -- that's what a support group is for.

And be sure to check out the special interest groups here at tuDiabetes. There is one specifically for followers of Dr. B's methods. And there are bound to be others that will be relevant to you as well.

David

Thanks again, David. Emily did invite me when I first joined, but I was taken aback when she questioned if the picture that I had as a profile pic was really me. It was really me! Perhaps others post things that are false, but I'm very much an open book. I am on FB and I own "A Cowboy's Hope for a Cure" where I play "Boss". It's a FB page linked directly to my Robert Puchalski page, so by only using the name Boss, I am not doing anything illegal or underhanded. It's just that the enigmatic Boss can be something to everyone. People enjoy the character and play along. The site promotes childhood illnesses/sicknesses/diseases/disorders of children, but I also accept adults.

Diabetes is one of the illnesses I promote. However, there are few children with diabetes that promote their FB pages as such. I am linked to a few Diabetes organizations that are on FB and promote those sites.

I haven't had time to get out to purchase Dr. Bernstein's book yet. I'll do that this weekend. Reading a book is hard for me because I don't have the proper eye glasses. On the computer I can just enlarge the fonts. It's not that I don't have the money or insurance to get proper glasses, it's just another thing that I have been ignoring since 1999. That's when I got my first pair of eye glasses and I haven't been back to the eye doctor since. I guess I'm a chronic procrastinator.

With my new faith in this site, I'll be checking back more often. I recently found a whole bunch of welcome email on my page, so I have a lot of people to say hello to.

Hope to give you an update on my finishing the book.

God bless you and your family.

Robt.