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.
As of June 1, 2008, the ability to post new comments at the Discussion Forums at Diabetes.Blog.com has been disabled. The old comments will remain available for you to read.
Please go to Diabetes Discussions to see new comments and to add your thoughts!
Instructions for posting comments may be found at Getting Started.
Thanks.
Bill the diabetesdoc
info@diabetesmonitor.com
GERI in CO, I went to the support group last nite. 10 people in varying stages of the disease. “Run” (I use the term loosely) by an RN. Lots of off topic discussion. Lots of bemoaning the symptoms and yet acknowledging that they are not testing enough. Comparing meds. I wasn’t impressed but STILL got some good info as I asked questions – I was accused of trying to hijack the conversation by one lady but I know why i was there – and it wasnt to eat diabetic cookies and complain. I’ll try it again for a few months and go with specific questions – see if it helps. I think next month she’s doing a focus on nutrition so maybe more appropriate discussion will take place. Thanks for your suggestion.
I just discovered this blog today. I was relieved to read the comments posted by others with my disease. I really have felt very alone and unable to cope with all of the difficulties associated with diabetes and low thyroid problems, as well as rebellious teenagers.
Judy, I’m sorry it wasn’t so great the first time. Our meetings are run by a CDN and she keeps tight control to keep us on topic. Each person gets a turn, sometimes us oldtimers don’t get a turn if newbies need more help, but I learn something every time I go. I hope they get better, but the meetings can only be as good as the person running the meeting.
This blog keeps me on track. It would be fairly easy to get indifferent, but because you pay attention, you jog my conscience. Thanks.
Type2sister: I don’t mean to make light of a bad situation, but I had to chuckle at the “rebellious teenagers” part. Sometimes I think they are worse than any disease! But, you know what? Make it through these years and you will be amazed how most of the time they turn out all right in the end. Take deep breaths, don’t blame yourself too much, and remember to take time for yourself, too. You are worth it.
So I am not sure what to do–if I can do anything..this is a long post please bear with me…
My daughter is getting married on 7/7. I don’t get to see my new endo unti 7/11(I am on a wait list–but no one has cancelled for me to get in early yet) This is a very stressful time of year at work for me-fiscal year end..long hours cranky people etc…and my husband is trying to decide whether or not to have a morphine pump implanted(industrial injury 17 years ago-spinal cord stim not allieveiating enough of his pain any longer)
I am on Byetta only because I can’t take oral anti-diabetics due to apre-exisint Kidney issue…My gp rx’d byetta 5 till I can get to the endo, but didn’t want to do insulin with….bg was running at about 135avg(except I have high morning and night BG–165ish since the spit)
I still get some side effectsofthe spit occassionally–so I am seriously thinking about skipping the spit the day before and the day of the wedding.My Gb’s are already up bordering the 200′s from the stress (hihgest they’ve been since I started the spit)…so they are sure to go higher when I skip…but not sure what else to do..losing a meal during the wedding hoopla or having the uncontrollable shivers would not make a nice experience for my daughter…what to do, what to do…any suggestions??
Denise: This question would be better asked in the Byetta forum. You can find it listed in column #8 to the right. You might get more replies there. But, yes, plenty of people have skipped a day of Byetta here and there. It doesn’t seem to cause any problems. Can you work at managing BGs better for now with exercise, glasses of water, and diet?
my bg goes crazy with the smallest of carb intake with no Byetta on board…so…there i am…does make one feel better even just to vent….thanks for the reply
Hi Denise in NV: I suspect that many of us are in the same category. Many of us don’t want to admit it. I will only speak for myself. I simply cannot handle carbs. Even Byetta won’t control more than the smallest amount of carbs. This appears to be why most people are on a second drug, to control either the baseline, the dawn effect, or the postprandial bg. I personally have just broken down to admit that my sugar is totally out of control even with Byetta. I have the choice of eliminating carbs and exercising, or adding a second drug, or both.
You do not seem to have had diabetes for long. In my case, I fear that I am officially in the “brittle diabetes” stage.
I flatout refuse to become an old woman over this disease. so — I’m opting for minimal carbs and exercise. I hope I can be faithful.
Thanks for listening. Others have been hinting at just accepting what is obvious — that I simply have to stop carbs — your message has convinced me of that. This is just where we are, I guess.
In the Byetta island Judy mentioned “I don’t need to advertise at my new job that I am diabetic. Most people are scared by this.” I am currently job hunting and I’ve been worried about someone noticing my alert bracelet. I’m type 2 and started wearing the alert when I went on Byetta and Glyberide. I have had several severe lows. I have always told family and friends what to do if I seem disoriented or having difficulty speaking. I was open about the diabetes when I was diagnosed but I was already employed and felt secure with the people I worked with. Now I’ve moved cross-country and won’t know a soul that I’m working with. Have people had experiences of discrimination? I don’t plan on bringing up the diabetes, but I also didn’t plan on not wearing my alert. What do most people do about letting co-workers know they are diabetic?
Thanks.
Carolynn
Care from Seattle, I know it’s important to let “someone” know that you trust. I have an ID tag on my keychain and a card in my wallet. I am also on byetta, metformin, and amaryl (glimiperide). But, at my new job, at training a few weeks ago – I happened to mention it to a few women and they were almost incredulous that I was even working. I’m older than most of them (51) it’s a very young company – and I am happy to have been hired. I don’t want pity, or fear around me at the workplace. I want to handle it and go about my b usiness.
Most of them already know I’m dieting because I’m very overweight and they know I’m carb monitoring because they have seen over the last 2 weeks how I choose my foods out (during training). I took my bg in the bathroom not at my desk, and I don’t talk about injecting because it scares most of them.
We shouldnt have to hide who we are and what we face, but I didn’t want job discrimination to be an issue since my age is already in play.
GL in job hunting and I”m certain that once you are on a job, and trust those who you work with you can explain with no difficulty. I will as well. They will see our vibrant selves and realize there is no real imminent danger.
Judy Byetta5 2x, Fortamet1000 2x, Amaryl 1g 1x,
I’m also thinking about going out into the work force after being self employed for the past 15 years and I’m 54. I’m bored with the business and I won’t spend any more money on yet another upgrade. Anyway I won’t/haven’t mentioned the fact that I have diabetes to the other employees or the manager because that is just one part of my life, it doesn’t define me or who I am. I will tell the manager if things work out and I’m actually going to be employed there because that is the right thing to do but the others don’t really need to know unless it just comes out in the conversation. Anyways that’s my take on things.
You can see my post in the Byetta blog about this one too. I’m fortunate in that I work for a very understanding healthcare group. They even purchased a mini-fridge for my office for insulin and later Byetta refrigeration. Since I’m very high up on the corporate food chain, I mentioned my healthcare costs and the expense of insurance to the CEO in one of our informal chats. I was informed to not even consider it since some of the owners and other senior staff have had several bouts with cancer which has driven our healthcare policy cost high.
The CFO did state that in most companies with different demographics, management DOES unofficially discriminate against people with existing health conditions if it is known before hiring them. I didn’t like it and I still don’t. But I learned my lesson. In the real world, I’ll do my best to keep it a secret if I have to start looking for a new job.
TimSlim, I guess my first thought for your cousin would be, If he was diagnosed with cancer or heart disease would he also be afraid to discuss it with his employer? Diabetes is a disease and it doesn’t mean he wouldn’t be able to continue to do a good job for his company. Is he paying for all of his medical needs out of pocket and not going to the dr for check ups regularily. If he is using insurance then they already know his health condition. I’m sure I’m looking at this through rose colored glasses but I didn’t think companies were allowed to lay off people for having a disease. Most companies end up paying more in the long run for doing things like that.
Thanks for everyone’s input. I think I’ll put the bracelet in my purse for this week’s interviews. If a company wants to discriminate, they find subtle ways to do it. They would never say it was due to the medical condition (unless they want to be sued). I used to have no problem finding jobs until this last go-around. I’m 56 and have grey hair. I found that I often would have 2 or 3 fantastic phone interviews with a company, but when I went in for an in-person interview I would detect an immediate “dislike”. I am about 30 pounds overweight, but present very well, very professionally. I could only figure it was the grey hair showing my age. I’ve since colored my hair and learned how to wear make-up and am having success with in-person interviews now. No one can tell me I wasn’t the victem of age discrimination, however there always was some other reason given (not enough of x, or overqualified and would get bored). You can’t sue for those reasons.
Geri:
A company will not lay-off directly for having a disease or problem. First, they’ll identify an individual on the lower rungs of the company or a low-performer. Then, they’ll move the person to another department. At the same time, several people will be moved into the existing dept or a brand “new” dept created to further developmental business interests.
Then, oops, well this new dept is just not performing to standards and due to business conditions, we’ll need to down-size. Will you take early retirement with a $40K severence package? Oh, no, there won’t be continuing healthcare coverage, but you can pick it up as an individual and then go on medicare when you reach retirement age. Great, have a nice life then. The less senior ones are just laid-off. Well, what do you know, the healthcare premiums are lower and the company has a better bottom line.
With cancer and heart problems, the individuals will use their sick time (sometimes 3 months of it that they’ve accrued). Then they go on 6 weeks short term disability. When they try to go on long-term disability, oops, were sorry but your dept has been downsized. We no longer have your position available and long-term disability is not available for you. Please try social security applications. Oh, thanks, you’ve been a great employee and have a great life!!!
I’m not bitter. But, my rose-colored glasses were seared away by the intensity of corporate brutality. I do not expect or see the world as being inherently good-natured. They’re all lions seeking whom they may to devour for self-profit and gratification.
There are individual exceptions, though both individually and corporately. Blessed are those that find their niche in this life.
TimSlim, I guess my rose colored glasses come from my husband who had a heart attack in 98′ and had a stent put in. He is now with a company that has given him the opportunity to start a new division from scratch. His heart has never been a reason for him to not get a job. But we will see what happens when I try to get a new job, if I decide to go ahead with my plans. I think my biggest problem isn’t the diabetes but the fact that I’ve been the head honcho for so long they may think I won’t take orders well. Who knows.
It’s interesting to me to hear how the business climate is going these days.
Geri:
I’m fairly fortunate with the company that I work for. It’s not all companies that act so ruthlessly, but the climate is dog-eat-dog with some. It sounds like your husband is in a good place also. Usually, it’s not the higher echelon personnel that have problems.
Good Luck with your plans!!! You seem like a person that formulates and executes plans well.
Robin Craig,Robin,
I have found the apathy a way of life in Our area. I live on the west bank, and the healthcare, and generaly any services in this area, no one cares and are just there to put in 8 hours.
Because of my job, I am kinda stuck here. But it seems you too are a victim of the area. Just keep working at it tho, You are the one who can make a difference in your own life and health.
TimSlim, I’m not so sure my husband would agree with that assessment.hahaha Thanks for the laugh today. One thing I do know, I get alot of calls from health care companies wanting to be my corporations health care provider. Then they find out I’m a company of one now and have diabetes they have hung up on me. I think they would have done the same thing when I had 10 employees.
I agree with all, and Care – I’m glad you are going to hide the bracelet. It’s a shame we need to but I would. I’m also glad you have died your hair and done the makeup thing – truth is – I do as well – and even at 100 lbs overweight present myself well! I get almost every job I go for – and don’t want to jeopardize it because of the diabetes. I am convinced I was let go on my last job because of too many bouts w/ an arythmic heart where I was hospitalized for just a nite or two. I think they just got tired of dealing with it!
Thanks for the headsup. I may be interviewing in the next six months and it never occured to me to be alert to health issue discrimination. I get it with age discrimination. Good discussion.
Annie and Mary: Re: Dizzy spells/vertigo. Keep your doctor apprised of dizzy spells. I suffered from vertigo and it kept getting more severe. I ended up in the hospital with dehydration after not being able to stand upright for 2 days and being too ill to eat or drink. A nutritionist suggested I might be allergic to gluten. I went off all gluten and had only two more attacks early on, when I didn’t know about hidden glutens. I have not had another veritgo attack in nearly 2 years. If you can’t find another logical cause, thank about looking to food allergies. And always keep your doctor informed.
Carolynn
Care from Seattle,
DUH I found Headaches etc. I actually have been screened for celiac disease and gluten intolerance isn’t apparently my problem. I was hospitalized for 5 days last April for being dehydrated. They are still unclear on the cause. I will let them know about the Dizziness if all isn’t well by Monday. THANKS FOR THE CONCERN maryB.
Carilynn, Thanks for the advice. I do have a history of allergies and asthma but my dizziness is caused by many different things. I have Benign Positional Vertigo, too low bg, too low bp and at times dehydration. I drink at least 100 ozs. of water a day but some days it’s not enough for me. It’s especially difficult in the summer. I’ve been tested for the dizziness and vertigo by a neurologist, audiologist and I have gone through treatment for the vertigo. Unfortunately, it comes back every year or so. I also went to physical therapy to help my balance and increase my strength. It helped a great deal. Thanks for caring. I’m so happy that going off of gluten made such a big difference for you. Annie
Carolynn, Please forgive the typo. I’ve been on the computer too long and need a long rest. Carolynn, Carolynn, I must type it 100 times. LOL. Annie
mama bowt, I hate to say this but you don’t have to be allergic to gluten to have a sensitivity or intolerance to gluten. I don’t have celiacs but I do have a sensitivity to gluten which affects the aches and pains in my knee. It could affect you differently. Also there are those who believe that all type 2 diabetics have a sensitivity to gluten and should avoid it.
geri in Co: Byetta 10, metformin er 1000mg 2xdaily, gluctrol xl 3-2.5 mg daily, ,
GOOD to know, I have done the gluten free diet before for about 3 weeks with no changes but that has been years back and the body does change. I will give that another trial. Thanks for everything. MB
Happy Monday to all :O)
I Was doing so much better with the bloat and nauseau and then my diverticulitus (sp) flared up and OH MY GOSH ! Quit the spit for a couple days because I was not able to eat properly and the lows were going to low, never went below 60 but I couldn’t handle the shakes on top of everything else. Not certain if that’s what I should have done but being a young spit, I didn’t know what else to do and of course it happened on a weekend!
Anyone have experience with what we are supposed to do when we are not feeling well?
I started the Byetta again and I am happy to say that the tummy ick is so much better. Almost to the six week point with Byetta and I am getting better at managing the changes I have had to make.
Could not do it without all of you !! Annie, Carolynn, TimSlim ~ Thank you so very much!!
Julie in Iowa
mama bowt, Metformin 500 er X2 Byetta 5 X2 ,
I did not develop my allergy to gluten until my early 50s. Before that I ate a lot of whole grain breads (and not so whole grain baked goods). I probably developed celiac disease, but to be tested you have to be eating gluten. I get too ill so I just call it an allergy and am very cautious. Our bodies do change and develop intolerances and/or allergies that we didn’t have when we were younger.
Carolynn
Julie,
I hope you are feeling better. I really don’t know what you are supposed to do if you can’t eat properly. I think I might have put in an emergency call to my doctor or called the Byetta hotline. I hope someone knows the answer so we will all be educated.
I’m so glad you are getting used to the spit. It’s worth the hopefully temporary incoveniences for the longer term health of having lower blood sugars.
Carolynn
I’ve just posted this on the Byetta Blog but thought I’d put it on here too as I feel it is very useful info.
Now here’s a thing.
Anyone else out there suffer with Restless Legs?
I have had it for years and it disturbs my sleep something awful.
Last night I had a very uncomfortable stomach. Very bloated and windy. I didn’t sleep a wink. By 5.30 I’d had enough. My legs were thrashing around the bed totally out of control and I couldn’t cope with either them or my stomach any more. I got up and went to the toilet and managed to dispose of the cause of the problem! Result. Stomach settled, legs settled, slept like a baby.
I have had this for years, but I have also had IBS for years. Just recently I have realised that an itchy left heel that I get quite regularly is due to discomfort in the colon and an itchy ball of my right foot equates to wind in my stomach and upper abdomen, once the stomach discomfort is dealt with the itchiness goes away.
The nerve meridians run down the back into the feet so any problem with the colon is likely, at least in some people to affect it and the spasmodic reaction of RLS possibly equates to bowel spasm.
The ‘experts’ keep coming up with high-faluting ideas about the theoretical causes of RLS, even suggesting faulty genes when in reality all it probably needs is a dose of Pepto-Bismol or a change of diet!!!! People have tried different things to help, some swear by magnesium, others by bananas. In reality, what they take is probably calming the stomach down (I took magnesium last night and it didn’t do a thing!)
Don’t forget, you heard it here first!!!!!
[NOTE: This comment probably should have been posted at Odds'n'Ends. I will let it stay, but in the future, if anyone wants to discuss this further, please post a brief comment here to tell folks that the followup will be there. Thanks!
Bill the diabetes doc.]
Advertisements from Google
Some messages from our sponsor
Care from Seattle,
If you’re worried about the alert bracelet, try wearing one of the pendants instead. At least you can keep it under your shirt during a job interview.
I was diagnosed with Type 2 four years ago this month. It wasn’t too much of a surprise, because my dad had it. But he was in his 60s when diagnosed; I was in my late 40s.
It did freak me out, but I’ve dealt with it pretty well so far. I am grateful to have decent health insurance and excellent doctors. When my bg levels started to creep up, my internist sent me to a very good endo who started me on Byetta.
I tended to be an emotional eater (and sometimes drinker). Since those things are pretty much out, I’ve become somewhat of an emotional spender. This was especially true right after I was diagnosed. (I wish there were something like Byetta for compulsive shopping …) I hope that phase is pretty much over, although I fell off the shopping wagon for a couple of weeks when I had to start injecting Byetta.
What do you do about friends and family who still don’t quite get it that just one piece of pecan pie is NOT okay (sorry, Mom!), and that you must decline that invitation to hang out in a German beer hall because everything on the menu is carb city?
Reviving my interest in playing chess has helped somewhat. The intensity of the game takes my mind off spending and other vices, and there’s no eating allowed in the tournament room.
I’m sorry that so many people are still ignorant about diabetes and cause problems for some of you at work. I’ve known so many accomplished, high-achieving people—physicians, artists, musicians, you name it—who manage their diabetes and their careers very well.
Care from Seattle,
It’s infuriating how shallow our society has become. “Ageism” and “lookism” are everywhere, it seems …
veebs, Yes it’s hard to convince people that you don’t want to eat that pie because you are concerned about your health, but I DO NOT refuse any invitation to go out because of the food that may or maynot be there. If I know that there won’t be food for me to eat I bring my own and go and enjoy. When asked why I have my own food I tell them that I got too sick eating processed foods so I can’t eat it anymore. Usually nothing else is said. Works for me. But go and enjoy life and don’t give up all the pleasurable things that you enjoy, just make a modification or two.
I agree with all who suggested bias against “fluffy” people.
I hate to complain every time I come on, but my nausea is getting worse instead of better. I can hardly find anything I can keep down or at least feel like I can keep down.
My weight is coming down very slowly even so, but except for fbs my counts are good.
I want to keep on, but feel like I can’t take much more of the nausea. I don’t expect a comment, you’ve all encouraged me before, saying it’ll eventually get better, but it may get to me before then.
thanks, just wanted to vent. Must be not many of you had trouble with smells. That’s my worst thing right now.
Foxy: Yes, they did! Lots of people had a terible time with smells making them sick. And many foods they used to like made them sick, too. The difference is that this is lasting too long for you. If your doctor says it is ok, ask if you can take a whole day off from the spit. That helped some people. After that, perhaps you could try once a day for a while. Some people started out that way for the first couple weeks because their doctors thought it would help the adjustment process. And it seemed to. I know we all said it would get better with time, but, this has been just so long. You are having a way worse time than most, so, I personally, wouldn’t think of saying that to you anymore. Girl, you have been very brave, but it is time to get a break from that nausea, ok?
Thanks again. I will talk to my dr. if this continues until the end of this pen (about 10 days from now). I intend to take a break this weekend. I’m going out of town and want to feel ok for my activities, not to mention the difficulties involved in timing meals.
I have a New Dr. starting next Monday, our Dr. office group has decide to leave the area. We were notified this last Saturday. Second time in 5yrs this has happened, but at least this Group sent notices, the last shut there door and left the phone service open with no ansering machine. Saturday I was so upset as all these med’s of mine and the Byetta, I thought with the Snow Birds here it would be hard to get in as a new patient. I am still dealing with alot of fatigue and terrible pain from having the oxycodone er mg lowered. I have heard this group of Dr. are DO doctors, so I am hoping to find something more natural for some of these health problems. I feel like I am rotting to death, with all this poisen in me. I lost another 1.2 lbs this last week. I know I am eating like a bird, but after a few bites I start getting full. I think this might be the culprit of my fatigue, I am just guessing. Gee Foxy, still having a tough time, huh? I hope ur wekend was good and maybe this week will be better for u. Toney can the combo of all the oral diabetic pills and then adding Byetta cause some to have such a difficult time. I never hear people shre what the firts or second or third orals pills made them feel like, maybe the mixtures are causing this, I don’t have a clue…just wondering.
Strawberi,
Sorry you’re having such a rough time. Mine is small potatoes next to yours.
Yes, I had an excellent weekend. Did one injection per day and actually tasted my food. Did not overeat though and had lost 2 more pounds when I got home. I did a lot of walking though, that probably helped.
Oral meds may make a difference. Don’t know. Need to talk to my dr., but he’s not in until wed.
Can’t decide whether to keep on with 2x 10; 1×10; or 2×5.
Today, with 2 x 10, I wasn’t sick, but wanted no food and what I did eat didn’t have a taste.
This morning, I can’t take it. This is the only place I can rant. Please excuse me in advance for being negative.
I hate injecting Byetta. I hate the sight of the pen. It makes me sick just to see it. I feel bad all the time (tummy). I hate to eat and nothing tastes good or right. I’m stuck though, because with no other med can I bring down my bg and my weight. I’d take pills anyday, but they don’t have the same effectiveness.
I need help with this, but don’t know how to get it. I’m very depressed. I see no light at the end of the tunnel. Anybody?
Don’t get alarmed. I’m not suicidal—just depressed
Foxy: I’m so sorry. You are one who has felt very bad since the beginning, and it is not fair. I know this isn’t accepted advice, but it just seems to me that you need a break. Who wouldn’t be depressed? You have been so brave for so long. Remember, I know nothing and have no medical expertise at all, ok? But I say take a break for a couple days. (Eat really low GI for those days.) Then, maybe try 1 injection a day for a while and see if you feel any better. I can’t remember if you are on the 5 or the 10, but if it’s the 10, for goodness sake, go back to the 5!
[I'd much prefer that any patient discuss any plans to take a "drug holiday" with their physician or diabetes nurse educator, rather than do so without such discussion.
Bill the diabetes doc.]
Foxy—Byettta; Metformin, other diabetic related meds., I’m sorry you are still going through the nausea stage. Has anyone mentioned about eating alkaline? There is a book that I read that helped me called “Alkalize or Die” by Theodore Boody or Broody. I had gone into the er thinking I was having a heart attack. It was just a very severe case of acid reflux but by eating more alkaline producing foods I was able to get off of all meds for it and only get acid reflux if I don’t continue to eat alkaline. It has helped with the nausea too. At this point it might be time to consider it since it’s mostly eating raw natural foods, staying away from processed foods. Try drinking distilled water too. Might help.
You’ve got guts to hang in there so long. You are no wimp that’s for sure.
toneylee in va,
Thanks, your encouragement is what keeps me going. Yea blog!
I’m on 10.
I go back to my dr. on Jan. 2nd. I’ll see what he says then.
Dr. Bill, any words of wisdom?
geri in co:Byetta 10(3.06), Glucophage XR, Glucotrol XL,
Thanks, Geri. Yes, I know about alkaline. Only trouble is, I hate most of that stuff also. Really, I think I’m a whiner, not brave.
STRESS! We need to discuss how stress affects our blood sugar. I’ve come to realize that I may need to go on the pump because stress seems to be a primary cause of repeated elevated numbers. In all these years, I’ve never noticed how seriously daily stress can hurt our health. Comments?