Hassles and Headaches of living with diabetes
This Discussion Forum is for discussion of the emotional side of diabetes: the hassles, the headaches, and to give you a chance to share your frustrations (and to realize you're not alone!).
Readers of these comments should realize that diabetes is a serious disease that can cause people to have strong emotional reactions. If you are upset about some aspect of having diabetes, please discuss your concerns with your physician. If for any reason you are uncomfortable with talking to your physician, find another person (such as a diabetes nurse educator, social worker, clergyperson, or family member) and discuss your concerns with them.
Please review and follow our usual ground rules, at Ground Rules. For example, anything smacking of advertising by a sales rep will be deleted without warning. (To share your thoughts, use the "Comments" link immediately below. Instructions for entering comments may be found at How to Enter Comments. I have also posted some discussion of Etiquette for Commenting.)
Bill the diabetesdoc
info@diabetesmonitor.com
Diabetes.Blog.Com is a blogcompanion to our main website, the Diabetes Monitor, which you can find at http://www.diabetesmonitor.com
If you ask me, it's all one great big hassle. But as Friar Tuck said in Robin Hood, "thank you Lord for the lesson in humility." I'm a much nicer person now than ever. I've been taught to weather adversity. Am I thankful for diabetes? Well, I wouldn't go that far, but it has been valuable. (Comment this)
I agree with Toneylee, you have us to talk to. It may not be the same as talking on the phone but I know everyone of us can relate to what you are saying about others not understanding about the things we have to go through just to manage this disease. I know you have been around longer than me so I'm so use to seeing your name too on the blog. If you need us we are here for you. (Comment this)
I was at the end of my "rope" three years ago. The depression was major. Byetta has certainly helped, but you're right. Some days it's just so much work and drudgery trying to keep a deteriorating endocrinological system functioning. I have a very supportive wife and loads of people in my life, but I still find myself going through down periods.
Hang in there!!! (Comment this)
I am constantly fighting the manic phases and the depressive phases.
If I give in to the manic I can be up for days at a time going like gang busters doing, creating, and never accomplishing anything but making a mess of my studio with tons of small projects that I started.
Then the other side of that coin pops up and I feel so tired and depressed that I feel like I cannot do anything at all.
So far I have kept the worst of the bipolar episodes in check by staying on a ridged schedule of when to get up and when to sleep. I also make myself complete the projects I start before I start a new one.
I am not taking any meds for this right now and I suppose at a future date or very stressful time I will need to go back on them.
I hate them as I feel like a robot when I take them.
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A little over a year ago, doc says time to start insulin. I cried, but he was indifferent, didnt show me how. He forgot to prescribe the syringes so when I went to pick up, just the insulin was provided. After I waited in long line, of course.
So I asked them to call the doc, and they said they had, but they had to order the syringes. OOOh I was very angry, that kind of flash just before a crash. How can a critical business like that not have software to match insulin with syringes inventory, or somebody who is looking at the stock? No excuse. i use to do that with my stock and train new workers to keep their stock well ordered in advance. Pharmacies, chain pharmacies must have an inventory system! Now I order two weeks ahead. It's ridiculous, go through that rigamarole every 3 months.
While I was fuming, and chewing glucose tabs, they are big and chalky,the lady in line behind leaned towards and said in a kind of loud voice, 'Are you insulin dependent, dear?'
I whipped around, and said "we are all dependent upon insulin, DEAR", I just happen to need to supplement, if only I could get it.
Deja vu with the Byetta. Doc forgot to prescribe the needles, but I was ready for that, called the nurse myself. Oh he forgets all the time. ??
Pharmacy hands me the Byetta, says come back tomorrow for the needles. Too busy to show me how.
Now an insulin diabetic, so bought a cheapo medical alert bracelet which made me feel chained with the word "defective" instead of "diabetic".It was cheap enough for the clasp to break, and dropped away.
Good stuff? Well my eyesight is better than ever, and I actually am calmer, and more tolerant, don't usually flash up in anger however "justified". So that's good for lifestyle. Just treated myself to some sport bands with diabetic but they look like fun bangles, not a dependent prisoner. Ha Ha!
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This idea came from "listening" to Judy who ate fig newtons. One night I ate an entire bag of potato chips! Somehow we have to learn to like ourselves and forgive ourselves, just like we would do to others. The diabetic lifestyle seems to be unforgiving, but we have to live positively. Guess that's that humility, huh, TimSlim?
I just started dancing again -- it costs a fortune and I worry constantly about that -- because it is great exercise, great endorphins, great catalyst for looking good since you are always in front of full-length mirrors! I hope I can be wise about the cost.
Good luck and good day to you my friends. (Comment this)
Take heart, I've been at it for a while now and fail miserably from time to time. My wife came in from scrapbooking last night and accidentally woke me up at 10:45pm. So, what did I do? I sat down on the couch beside her and consumed 1/4 bag of Potato Chips!!!! Boy they sure are salty and good. Oh well, this morning, I got back on the diabetes bronco and started riding it again.
Take heart, we all have our moments, we just try to minimize them and get back on the bronco. (Comment this)
yep, doc is endo specializing in diabetes. But compared to the other doctors I've had, he does have medical expertise, as I read up on everything he says. I get the idea the petty things, like test strips, needles are just not his priority of attention. The necessity of having to remember for him is a small thing I guess but it just hits me wrong. I'd like some of the burden to be shared.(wishful thinking).
Mood swings, so weird to be happy and 30 minutes later, it's "kill bill" time. Guess it worked in the Dark Ages, but not so good for these times.
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I don't know if there is a single simple trick to hang on. But there are things you can do that work even just a little while. I was working when I started Metformin. Good thing I was close to the ladies' room, wow, I'd have to drop the phone and RUN! Began taking spare clothing just incase, so I wouldnt have to go home. Doc said it ws IBS, gave me a note to take one solid week off, and curiously that helped, even if my co workers left everything undone or in a mess and that's not paranoia, the boss saw it with her own eyes for a change. Which helped a lot to re-organize my workload, which helped with the IBS.
And, don't you just love the friendly folks who stop by with the giant carton of greasy doughnuts? i began to suspect them of being deliberately mean. Every week, I'd be the first person they'd wave the box at.
I found the best thing was to just have "nibbles" at my desk, but make sure that breaks and lunchtime was off-limits by leaving and going for a walk. In other words, made my absence "legit" and inconspicuous. Those kinds of things are able to be controlled. I think what gets me down is feeling I have no control, so I take bits, at a time. It does help. (Comment this)
My doc had me take a prescription form of Imodium AD and it really helped with the cramping and diarrhea that I got from Metformin (Comment this)
One day, I was in a broken down mood, my chest and left arm had pulsed a warning to me. Not a heart attack, he said. I looked at the doc, and said, "I think I am dying". He merely replied, "We are all dying". Irefutable, but not quite what I was hoping for. Kind of made the whole diabetic program seem ridiculous. Dangerous thinking, no doubt. But that's the given in life, so its about quality of life, and doing what I can for it.
I have a sense of survival, and the sense I am entitled to survive. I found stress reduction books and started a stress buster class at work. The bosses had to go along because they touted morale and team spirit, but I know they hated my intiative, and found ways to schedule the room for other events. None the less, the folks who came joined me outdoors or in the lobby. It wasnt about diabetes or heart trouble, it was about living for a moment even in a job where one is expected to postpone all usual life events to meet the deadline. All those folks were helped, and they cried when I left. But I left them the tools, which was more than was done for me. That felt GOOD. (Comment this)
Thanks for your replies... hope you'll pardon me going on another tear. I could use all the help I can get, frankly. I'm out sick AGAIN today, and I know my boss and coworkers are far from supportive. Docs' advice has been 'Well you'll just have to try harder to have less stress and stick with the program' but there is literally not time in the day to make and eat 4 meals, exercise, work and get 8 hours sleep.
But to stick on topic... I don't see a forum here about fitting diabetes management into a job. Where should I look?
I've been told I take too many breaks, don't work hard enough, and ask for help too much. I take two 30-min meal breaks daily, and work evenings and weekends to make sure of 40 hours a week, making up all the time I've been out sick. I have to report every day to my boss in person to prove I'm actually working; when I take work home I report in by email. But I can't just decide to work longer days or not take breaks, because then I'll quickly be too sick to do anything.
I'm 'only' insulin-resistant, and 'only' on 1000mg metformin, 500mg after breakfast and 500 after dinner. The diarrhea is mostly under control on this lowered dose. The problem I have that interferes with work is bouts of what I suspect are 'lows' - weakness, dizziness, stupidity. I get too tired to stand up, too dizzy to turn my head or focus on a computer screen, and become unable to read or type accurately or hold an intelligent conversation. I have to leave work because anything I do in this state is error-riddled and takes forever, and I've already been accused of laziness. This state lasts at least a couple of hours, whether I eat glucose or not. Last week I tried to work through a bout and fell down on some concrete stairs. I'm really furious about getting sick today, because I did nothing wrong! I had 10 hours' sleep from the crash yesterday, meals and meds on time, no sweets, and still I had to sit down right on the floor in front of my boss.
I'd dearly love to change meds, lifestyle, whatever I must to be competent at least most of the time, but at this point it might be too late to salvage my job regardless. What do y'all suggest? (Comment this)
No, haven't learned to test blood glucose yet, two different docs and a nutritionist said that was overkill at this stage. After six months and reading y'all's posts obviously I disagree. You can get a meter without a prescription? Huh. I'll see if I can do that today.
I have been sticking to organic stuff and veggies as much as I can and still have time and tolerance to eat it. In the first couple months, I was terribly sick on veggies, and 2nd doc told me to get more protein. Maybe I can try again at the lower dose.
-Thanks, Pteryxx (Comment this)
All I'm doing for stress is a few minutes' stretching before meal breaks, making sure to take a few deep breaths when I can, and taking a couple hours a week to do things I enjoy, if I can. No set schedule for such... heck, I don't have any set schedule time left. But yeah, most of the time I hate every minute of the day. Been tracking symptoms, meals and such daily since Dec 1, and I've counted since then five times in six months when I've been happy. Depression? Well, duh. Think meditation is worth adding onto the schedule? (Comment this)
Doc says, NO STRESS ALLOWED. Well, when you are uninsured and struggling just to get by, there is stress added and depression worsens. If only I could get rid of the pain. Maybe I need a new doc? More money? Better system in this country for people with chronic diseases and no way to pay for the medical help you really need. I've done well for myself on this. No help from doc about diet, exercise or anything. It seems it's a learn as you go thing these days. He told me to lose weight. I did. Down from 150 to 115. That in itself has helped with the BG levels. I gave up alcohol completely and was able to go off the HBP meds completely. Ok, I'm ranting here. What I'm trying to say is, there is not much help out there in the medical profession these days for people with our condition if you don't have the funds to fund it...not fair. But that is how it is. Regardless, NO ONE and I repeat, NO ONE should have to go around in pain. OTC meds don't work. When I tell doc they don't work, he says "Take walks." Duhh! Louisiana here. 110 degrees in the summer. When it hurts to walk because of the neuropathy he just looks at me like I'm a nut. No insurance...no meds, except for what I need to stay alive. Well, if the pain continues and I don't get help, ain't gonna be me that needs meds! Does it cost alot to go see a neurologist? Oh, this is too long. Sorry! (Comment this)
Next -- there are some people who cannot take metformin. I am one. Not only does it bring on the runs, but I go into a DEAD sleep for hours. Now, years later, I tell the drs to stop talking when they suggest it. I tried and tried, breaking the pill (not timed release type) and taking a particle. There is a better solution to reducing dosage of metforming -- it is Riomet which is liquid. I looked for that for years. So those who have difficulty with metformin might want to consider something else.
I am on Byetta only with occasional help from Starlix. I exercise lots and have to keep VERY close watch on my diet. AND I am not perfect. When in difficulty, I have to resort to fast and mid-acting insulin.
We are not all alike and it infuriates me when our health professionals don't take this into account. I left 4 endos before I found one I could work with. Now he moved to CA and I'm working with his former PA and a weight loss endo. So far, so good.
Good luck to all of you. Do not lose heart, and expect to have to struggle with your health pros. Be very happy if you find those who you can work with.
There, I feel better. (Comment this)
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Thanks for this, for this Hassles forum and the upcoming Financing forum and for keeping this blog up all these months and years. I've only been on less than a week and I've already learned things to try, what to expect, what the range of symptoms can be, and had more sympathy from the faceless strangers here than I've had from three doctors. There's no simple answers but if I find answers at all it'll be due to this group. Thanks.
-Pteryxx (Seattle/newbie/met 500 2xday)
First testing experience coming soon (Comment this)
I was raised in a health conscious home, taught nutrition in school, had friends in health food biz. In those days, soda was forbidden on the school campus. Ate fresh food, lots of vegg, little meat and rarely fish or eggs. Mom did not buy junk or processed foods. She did the cooking.
I walked everywhere because I didnt have a car. I worked hard at jobs requiring standing and walking all day. Although retired now, I am still limber and strong for being in late 50s. I am skinny on the face, arms, legs butt thighs. Just this darn spare tire has put me over the edge. Its handy for injections.
Fussy eater. Don't like fishy gristly gooey or barbecued foods. That kept a lot of "unhealthy" away.
Did drink a lot of coffee, black or sometimes when I could get it, with cream. Did like hearth baked crusty bread with real cheeses. Did like dried fruits-the leathery kind. Good nuts, whole raw milk. Avoided trans fats even then, and avoided processed food products. So the plaintive cry...why me?
I skipped breakfast because I have never liked to eat in the morning. Skipped lunch because I would be in job where that had to take low priority. Ate a good dinner, with the food groups: red green vege, potato usually boild, piece of chicken. No buns, no dessert. GRRRR! It makes me mad.
I think back in my case and feel that thiazides with estrogen in a high stress job with skipped meals and a lot of dental work brought me over the edge, and it's been hard work getting back to normal bgs. It makes me mad to see fat people buying junk food for themselves and their kids, while I "know better" and am the diabetic. GRRR
The worst of the diet for me is that I am supposed to limit fats. I really thought diabetes about carbs. I know, it goes to storage. I am not as active, so in doesnt quite equal out. Still, I really don't know what to eat--that I like. I don't like much of the recipes I've seen. Down to cottage cheese 4%, rye crisp and Atkins shake, 1/4 cup fruit. With the Byetta a salad is way too bulky, and I dont see chewing it into a cud.
The bad part is, I can go without food, but I know I need it. I really hate this. (Comment this)
I have just recently discovered this web site and I think it's wonderful! (Comment this)
My friend's husband just died from a sore that would not heal. He did not pay attention to his diabetes. It is very sad. We DO have a difficult life, but we must remember the alternative. Sorry to be morbid, but we MUST be strong. We need to be a cheering squad for each other. Hang in there, my friends. (Comment this)
Boy, do I agree with you on the food. I eat only because I must, not because I want it. Even food I loved is more worry than it's worth to eat it... chocolate is just 'little wrapped packets of rules'. Maybe that's better than having desperate cravings, heh.
-Pteryxx (Comment this)
I've only just discovered this site and already feel better talking to you all.
Having a thread on for financing diabetes would be absolutely wonderful.
But, after careful thinking as I posted the other day, I said to myself, "Self, you deserve the best care you can get. You worked hard all your life, took care of your family, and so what? You got this hideous, totally UNFAIR disease that ravages the mind, the body and the soul. Do something!" So, yesterday I did.
I was soaking in the tub yesterday morning. The pain everywhere was so bad! Enough crying! I called the Huey P. Long Medical Center (free hospital), and went there.
I was lucky to get in and out as quickly as I did. Gee, only 6 hrs! But not to complain. It is free, afterall.
Got blood work done, and saw the doc fast as my BP was way up. 200/100. But I told them that I have this "white coat" syndrome. "Why?" They asked me. "Oh, maybe cause I'm gun shy on the cost of my medical care over the years, and the fact that docs just don't take the time to talk to me about anything."
To make a long story short, my potassium was low. They gave me a dose of potassium, in a pill. Told them I'd rather eat a banana. Metformin is of course the culprit with the runs. He was gonna switch meds, but I told him to hold off on that as it is time for my check up, and that the runs are the least of my problems at the moment.
He also gave me a RX for BP meds, a RX for potassium, and a RX for Neurontin. All my beliefs, he believes, are correct about having diabetic neuropathy. Not that I can afford to fill the RX for Neurontin. So, today I call social services and see if I can talk to someone about their special med program for RX's. Just for the neurontin, as the rest of my meds I can get at Wal-Mart. I have RX's for 5 different meds now. Wal-Mart will do up to 3 for 4 bucks, and the special state funding will also cover 3 RX's for 8.75 each. All I want them to cover is the one for the neurontin.
Well, I have an appt with a neurologist coming up soon, through the state, to verify his diagnosis of neuropathy. This is what I've been telling my doc for quite some time now.
Also, after telling the doc about an episode I had (entire torso pulled up while I was soaking in the tub, like when they defibrilate someone, and the left side of my face kind of scrunched up and stayed that way for about 5 seconds or so.) I thought, dumb me, that was another sign of neuropathy. Wrong! Doc said my heart fibrillated and it was an episode of a "pre-stroke". Now, that scared me.
We have to do all we can to take care. Even if we have no insurance,which there is no excuse for. We need to get all the help we can. Now that I am on my way to "free" medical care, at least some free, I'll wait all day at the medical center. Well, I hope it will be free. They've not consulted on the matter yet...watching for the bill in the mail.
So, I say free, but am not sure yet. But, I am one step closer to relieving some of this pain, if I can get the state to help with the neurontin.
Ok, I'm babbling. Let's hope it all works out. I'll keep you posted, and don't give up guys! Maybe some of you need to get mad like I did yesterday, and go and say, "DO SOMETHING."
Doc was nice enough at the hospital, he was over worked, tired, and just plain weary. But knowing I have this white coat syndrome, he promised to wear black if I ever need to see him again. For all you guys, it took 6 hrs to get in and out, and I saw the doc for maybe 10 minutes tops. He never examined me, he never touched me, and he asked only the "important" guestions, and still did not have the time to let me really talk or ask too many questions...on to the next patient. It's sad really. (Comment this)
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Welcome to the site, as one rookie to another. The support and experience here are so valuable... managing diabetes looks so insanely complicated. I've known folks on HIV medications that also suffered loss of employment, intolerance, nausea, and terror along with the hassle of managing multiple meds and meals every day, but at least they could eat whatever they
wished (within reason, and if they could keep it down). And they didn't have to test their blood viral load a dozen times a day.
Responding to this:
"For all you guys, it took 6 hrs to get in and out, and I saw the doc for maybe 10 minutes tops. He never examined me, he never touched me, and he asked only the "important" guestions, and still did not have the time to let me really talk or ask too many questions...on to the next patient. It's sad really."
It's just another symptom of a society that thinks people are machines, and can't deal with the concept of chronic illness management. Lots of doctors and nurses have blogs on the Net and complain about how the drive to make a profit prevents them from doing the very thing they won their spurs to do - help patients. I hope that, somewhere among struggling to survive, I can find some time to advocate changes in our survival of the fittes- err, 'healthcare system'.
-Peace, Pteryxx
One example from a nursing blog:
http://nurse-ratcheds.blogspot.com/2007/05/lucy-chocolates-and-our-failing-health.html (Comment this)
Oh, silly me...the Rx was not for BP, but it is an anti-depressant that they prescribe for chronic pain. My pharmacist laughed at me when I said, "I don't need the BP meds." "What BP meds?", she asks. "Those amitriptylin things." I say. Am I silly or what? She's like "Those are for chronic pain, an anti-depressant." All I could say was, "Oh...".
Why do I need both the pain meds and the neurontin? Says they treat pain in different ways. I asked if it would be smart to just start with the pain meds and wait on the neurontin to see how they work. She said it was ok to do that.
Pain meds are only 4 buck at Wal-Mart, while the neurontin was NOT 4 to 5 hundred, but only 103.00. Which is bad enough, but much better.
I have an appt this Wed at the state RX service at the local hospital to see if I can get the neurontin for 8.75 instead of 103. I'll take all I can get for as little as I can get it. Paperwork, paperwork. But if I can get all meds for under 30.00 a month, that is a really good thing.
Perhaps we are on our way to an easier way of taking care of me, much less stress that is for sure.
I'll keep you all posted. This is a great place and in the couple days since I've found this place, I already feel so much love. Thank you. (Comment this)
Thank you so much for starting this forum. I know it will really help out many of us that need it.
This is a great place to visit, and to let it all out. (Comment this)
I've been quite aware of the need to eliminate food for pleasure, entertainment, emotional crutch. I have lost weight successfully a few times, and each time I've had to remove "thinking about food" in order to get control. It is an alternate lifestyle, quite antisocial, but it was always necessary to replace eating with something else very enjoyable. Lately it has been dancing, but I broke a bone in my foot yesterday. I love boardwalk walking. A good novel has worked. Horses were fun once. Family usually brings me enough trouble to cause eating. A few thoughts. (Comment this)
My mother had bipolar too and it was growing up with a out of control mother that has made me very aware that only I can help me.
I do not want to be like she was or do what she did to all who loved her!
Thanks for the recognition, and yes I try to get out in the sun each day as it is a huge mood booster.
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