Contemplate, Relate, Educate - share your perspective!

41

I am a Type 2 diabetic for a little over a year now. Some say it would be the “easiest” type of diabetes to have. After all, no insulin shots. But it still has its struggles…

Living with diabetes on its own is a challenge, but living with diabetes in a community/country that remains ignorant about this disease…now that becomes a pain in the neck.

Given my overweight physique, it’s not hard to find people who would blame you for having diabetes. All the time, I hear people saying “watch your diet, exercise, yada yada…” not because they care, not because they care, but to point out that you did something wrong to yourself to deserve it. In the Philippines, being diabetic meant that you ate every possible sugary substance there is, and now you are being punished for this.

Countless times, I have heard a lot of unsolicited advice, especially from people who absolutely have no clue what a Type 2 would be to begin with. All they know is you CANNOT EAT ANYTHING SWEET. Of course, everyone here would, by know, know that this is not absolutely true. Then again, why should I care? I can’t run to them when I run out of metformin or strips; or when I am rushed to the hospital.

Even as DHF ambassador to the Philippines, fear still haunts me every now and then. Yes, I am just taking metfromin to control my glucose. But who knows what could happen next? What if my T2 becomes a 1.5? Or what if my T2 becomes way too unruly? Then off I switch to insulin shots. I know, it’s nothing to be scared of…as long as your wallet permits it. Living in a country where no insurance company would shoulder diabetic care out-patient sure sucks big time.So off to work I go–a night-shift job in customer service. Talk about more stress. Then again, I’d rather die doing nothing for my diabetes, than be a goner doing nothing.

There is just one thing I know–I have to live my life one day at a time. This way, it no longer becomes overwhelming. Strive living with your diabetes with utmost care for yourself. Who knows, your life may be the only hope another diabetic would ever have…

42

Ok, I’ve read all rhe messages and I can relate to almost all of them. I was dx’d at the age of 8. Being told I hsd to take shots for the rest of my life was more than devastating. NO kid wants to hear that. My grandfather and my uncle were/are T1. My grandfather died more than 15 years ago. I think I was so freaked out about it that I have just blocked all of it from my mind.

Growing up being a diaberiic was a ■■■■■ but I got through it. I guess, if you can say that. I fought against it every day. I sometimes wouldnt take my insulin until I couldnt walk and had to go to the hospital. I seemed to do that every couple of years. I dont know what I thought I was proving.

At the age of 19 I got pregnant. I had only been married a few months. I’m not sure where I got the idea I could even get pregnant. I was told when I was little that diabetics shouldnt have children so I thought that would never happen for me. but at 19 it did. My gyno was going to be retiring within the year so I went to a new doctor. At my first visit after the exam she read me the riot act. I was smoking at the time and she told me between D and smoking my chances were slim at best. I left her office, went out and had one last cigarette and didnt pick up another one until after my son was born. Ok…ok…I’m a slow learner. i did quit a few years later and have not smoked now for 20+ years. Anyway my pregnancy went very well and at that time I decided to grow up. No longer would it be just me. Now there would be someone else depending on me. So I started taking my insulin everyday. i did well while I was pregnant and only had to deliver my son about 2 weeks early. They had told me I would probably spend the last 3 or 4 months of my pregnancy in the hospital. So going in so close to my due date and only having to stay for a weekend and delivering on Monday seemed like a godsend. My son was jaudaced ( think I spelled that wrong but he was a little yellow) so they kept him in NICU for several days. He ended up ok and is now a healthy 26 year old. I breezed through the pregnancy other than about 7 months of morning sickness. I spent more time in the bathroom than any place else. But he was healthy and that was all that mattered. Ok so lets see I got married, had a baby, graduated from college, got married a second time and then in 1999 went on a pump.

I thought being on a pump was the greatest thing ever! But I was starting to have some very strange symptoms and no matter what doctor I went to or what tests I had they couldnt figure out what was causing the symptoms. Everyone wanted to blame D but I just knew that couldnt be the reason. So after a month on the pump all of the sudden my symptoms went out of control. i was seeing double, I couldnt walk straight, I had a tingling sensation from my neck down and I sure as heck couldnt walk straight. I did think for awhile that my pump might be causing the problem but even that didnt make sense to me. I was already seeing a neurologist and she was in the process of getting an MRI set up for me. I had already had 3 or 4 and none of them showed anything but this last one finally did. I was dx’d with multiple sclerosis. Another auto-immune disease.

D had never really been that much of a problem for me but the MS turned out to be a ■■■■■. Every doctor I saw wanted to blame the problems on D but I knew that was wrong. In the end I turned out to be right…dont know that that was a good thing. In the last 10 years I have decided that blaming things on D is easy. Not that they can really do much about that either but MS they can do nothing. But here we go again with another disease that can only be handled with injections. However ms medications make insulin seem like a walk in the park.

I now thanks to the ms can barely walk. I would give anything to only have D. I’m not trying to downplay it or make light of it but it hasnt destroyed my life the way ms has. But I guess the bottom line is auto-immune diseases suck, some just more so than others.

43

Anngelia,

I’m so sorry that you have MS. Please check out “low dose naltrexone.” It’s inexpensive but has to be compounded correctly at a compounding pharmacy.

It’s ridiculous, but not many doctors have heard of this. My rheumatologist hadn’t and she passed her boards a year ago. It actually stimulates the immune system - sounds crazy right? But low dose naltrexone has been studied and does seem to work for MS patients.

44

You may have to argue with your doc a bit on this, my rheumy refused to let me try it and said there was not enough science to back it for any autoimmune disease. I made the point, what could it hurt to try? Have you even looked at the studies? That got him thinking and now his clinic is putting together a study for MS patients and then folks like me with myositis. Hang in there, you are right, autoimmune diseases really suck.

45

In the past I have described Type 1 as similar to receiving a mortal wound in a battlefield situation, but having enough medical supplies to keep yourself alive so long as you constantly devote the majority of your attention to treating the wound. The unending preoccupation with maintaining stable, good blood glucose levels shreds my emotional well-being, to the point of persistent emotional exhaustion. My friends and family often make light of my stoicism and at how “calm and collected” I always am. The truth is that I do not feel as if I have the emotional resources to make life’s other events outside of diabetes as compelling as managing my diabetes must be in order for me to have good health. It often takes extremes- physical and mental -to move diabetes out of my mind for even very short periods of time. This is probably why I’m an adrenaline junkie.

I am constantly finding myself jealous of those who do not have diabetes, if only for the superior mental clarity I believe them to have. Truly, I hate this disease. I hate waking up and having it be the first thing that drifts into my brain once the cobwebs of my dreams have been pushed aside. I am never diabetic in my dreams.

Eleven years of infusion sets have scarred my body. DKA has almost killed me twice. Almost fifteen years of this disease has instilled in me fear and guilt that have pushed me towards a kind of depression I otherwise never would have imagined existed. I fight that off every minute of my life, through routines that border on the religious, adrenaline when I can get it, and an unconscious habit of creating constant distractions.

Deriding it in almost every other context, I allow myself to indulge in the luxury of faith, that a cure will emerge because scientific progress is inevitable. It is like imagining an oasis in the desert. Yes, oases do exist and you may even come upon one given enough time and luck. But the chances are far greater you will die in that desert the way you are- thirsty, tired, and in my case, diabetic.

Victories are simply days where nothing bad happens. When my blood sugar doesn’t spike to 250. When my test results don’t show kidney damage. The best I can hope for is nothing. I may know very well what I’m doing, but I hate doing it. To hate what you do, what you must do to your own body, is something I do not know how to endure. Why would I? Type 1 was a death sentence until very recently in human history. Perhaps this mental exhaustion is one reason why.

If either of my children were diagnosed with Type 1, I would never forgive myself. I am relieved every day that passes in their lives without it happening. It is another source of horrific anxiety, potentially a mass of guilt I am sure I could not shoulder if it were thrust upon me.

That’s Type 1 for me. I know I paint a grim picture, but at the same time I do well at bottling this up and directing the pressure into (mostly) safe outlets. But every day I wonder how long I’ll be able to keep it up.

46

Hi Jason: Thanks for your point of view. I always appreciate your posts because you are raw (meaning blunt and honest, in a good way) and intelligent.

Melitta (who’s with you on hoping for better technology)

47

Thank you very much, that is kind of you to say. I feel as if people will only truly know and understand me if they know my true feelings about things- “warts and all”. I don’t claim to be able to logically defend every position I take but I will be honest and explain why I think the way I do. Unfortunately, this leads to some people being offended, but I find the faults of those I am close to endearing in many ways. I feel you can learn just as much, if not more, about someone from their shortcomings than you do from their successes.

I hope my successes inspire and educate other diabetics as theirs have for me. I hope my faults, no doubt equally on display, demonstrate my capacity for failure- my humanity.

48

i’m so agree with you! As an old type 1, I can read some parts of my life… Isolation: that’s right and the big fear of low at night. beautiful work. Now I must work about the handbook. But I really need some people to correct my English mistakes! Maybe Linda? or anyone else . Thank you so much.

49

I feel like we’re all getting to know one another so much better. I am honestly in awe of each of your stories so far. I hope more people will post. It’s cathartic to have a sounding board when you know people listen and empathize.

50

Jason, if your children develop Type 1, don’t go putting yourself on a guilt trip and blaming yourself. They get the good stuff from you and they’ll have a sympathetic and competent parent to help them. You gave them the gift of life, not a curse.

If it ever happens, and God willing it won’t, and I hear about you blaming yourself, I’m coming over there to kick your ■■■.

Terry

51

Jason, “Faith is the evidence of things NOT seen” I see a lot in you: determination, diligence,and deidication to helping others with diabetes. You are honest about your feelings. Do not blame yourself for anything
about diabetes. I am a type one diabetic for 41 years, and I too can relate to the constant vigilance and the cloud of “What if’s?” that hang over us sometimes.
I do not see a bottle of pills that have a label imprinted " diabetes cure". It is beyond me to see how it will happen. But because of my faith, I can see myself pumpless, no extragenous insulin needed( my body will make just the right amount on its own), riding a bike in the sunshine at age 75 with my great-nephew, taking a cruise to the Ivory Coast,praising God for His faithfulness, and telling others how grand it is to be a healthy FORMER DIABETIC.

God Bless
Brunett

52

Well I have had diabetes since 19 and did not get officially diagnosed because of insurance till in my 20’s. I was told my gestational turned into T2. I am so insulin resistant that I use about 260 units of insulin a day. I have been put on a pump and still have sugars in the 300’s. By the time I finally went to the Dr. I was having sugars in the 600’s and could not hardly see because of blurry vision. Now I live day to day feeling like all I ever get to do in life is try to manage my sugars. I can’t get them down, so as you can imagine I feel like a failure. I to feel isolated because of being young and having T2 I have no one to relate to. I test 10 times a day and always chasing high blood sugars. When most get to scarf down their food, I am over in a corner calculating how much food I prob. will eat and bolusing. They are looking at me saying I sure am glad I don’t have diabetes I could never do what you do. I want to be like everybody else but know I will never be and that gets really depressing. Because no matter how I eat how much exercise or my meds I just can not control it. Also no matter what I weigh does not help. I was diagnosed when I weighed 115 lbs. I don’t now but still manage my weight ok but now I am having a lot of swelling because of all the insulin. Which is making me feel awful.

53

I used to be a horrible, horrible diabetic…for so long. I just came and went and did whatever I wanted. I don’t really think that my mother had any idea of the complexity of diabetes. I think her ignorance (sorry M) got her through everything. I never used to be afraid of going low, because it hardly ever happened to me, my BG’s were always HIGH. Now, I am EXTREMELY guilty, but there was NOTHING out there for us to learn by. I have two healthy children for which I am VERY thankful - was it just coincidental that they came out OK ? Yes, it was. Its only just over the last several years that information and technology has let us understand and deal with ourselves. Yes, I always felt isolated and insecure and never knew anyone with D. even my own sister never understood.
Sheila

54

This is what I wish people knew…

*I wish people knew (non-diabetics) that I am no different from them.
*I can eat what I want to eat in moderation and they don’t need to feel bad eating sweets or bad food in front of me, even if I choose not to have any.
*When I am at a restaurant, please don’t lecture me about my choices in food. If I’m at a restaurant, I want to take a break from “healthy choices” and enjoy myself. As long as I closely monitor my bg, I will be fine.
*Yes, diabetes is something I have to live with for the rest of my life. Yes, it can be very hard at times. But I feel like it has also made me a lot stronger and opened me up to a life-long learning experience.
*I was talking to my ex on the phone and it had been awhile since we talked. I told him I was diagnosed with diabetes and his words were “Damn fatty, how did you get diabete?” He is a jokster and I knew he was kidding, but it did get to me. I ended up telling him the facts that I know about diabetes. So please don’t label or make assumptions about diabetes. If there is something you would like to know, and I know the answer, I would be more than happy to tell you.
*Don’t get scared or freak out when I go low. Just simply ask if there is anything you can do and it would mean the world to me, because a lot of times the low comes on so quickly and its hard for me to sometimes do things myself.

55

Dear Jason.

Very well put, I feel the same. It is like a never ending war. And like most wars nothing much is won. In my case I do not have gangrene of the feet yet like my brother did. Avoiding a negative is in no way as rewarding as gaining a positive.

Depressing too that we can pass on the problem to our kids. So far none of my kids have any ounce of fat on them but then again the insulin resistance may not have started yet.

56

No one in my family had diabetes, so this was so new and unexpected. I had been sick a long time but despite checkups and blood tests the doctor simply didn’t read the test results until I was almost constantly high Au in the 30’s and freaking out about rashes and being so sick. Then straight on medication which was doubled with each visit and still no control. After a month I was told to go on insulin injections. I freaked, and the doctors didn’t want to know me after that.

What I am trying to say here, is that there seems to be no counselling for new diabetics, just this shock of “this is the rest of your life” horror. After 2 years I am settling down but I think I’m still in denial. I don’t understand this, how it could happen to me. I don’t want to live like this. But the doctors just say, take your medicine and I’ll see you in 3 months. That just leaves me so distressed. I don’t feel my own reactions to this have been addressed at all, nor are they likely to be. So I struggle on blindly on the highest doses of oral medication which I hate taking.

I do have other fears but don’t know how to discuss them with a doctor who wants me out quickly so she/he can churn through another dozen patients in the next hour. I’m trying a new doctor tomorrow, but not seeing her about diabetes. Think I’ll check her out first. I need to find out what is wrong with my leg(s). Last doctor just said “old age”. Maybe it is but it is interfering with my life and I would at least like a diagnosis.

57

Hi Karen,

Sorry to hear of your struggle. Terribly distressing to not have adequate medical support or education. Actually, it’s infuriating! Glad you’re here because there are wonderfully helpful people to share with & learn from.

I hope you will reconsider insulin. There’s nothing to freak about taking something your body needs to help with control. When meds don’t help, insulin is a lifesaver. Promise you that injections don’t hurt & there won’t be the side effects many have on oral meds. Most importantly, insulin will preserve your beta cells & you’ll feel much better when BG isn’t high. There are Type 2s members here taking low doses of insulin.

Hoping your new doctor is someone who cares.

Please keep us posted & don’t hesitate to ask whatever you’d like to know. We’re not doctors, but there’s a vast storehouse of knowledge here.

58

Dear Cathy.

Your case is heartbreaking and I don’t know what to suggest. Try a zero carb diet for a while and see if that helps. Even better try to go on a fast for a day and cut down drastically on your insulin. I have cut down my lantus from 35 units morning and evening to 25 units each and have cut down the novolog to less than 15 units per day. The blood sugar is actually better contrary to what you would expect. Since nothing that much is known about insulin resistance it is hard to say what to do in extreme cases. I think it is possible to saturate the insulin receptors. Thats why I think a zero carb diet and or fasting is somehing to try. We don’t want to loose you. My heart bleeds for you. Best of luck.

59

I’m Type 1.5 (LADA). I was diagnosed at a very young age of 39 (LOL). I took it all in stride. The need to weigh/measure every piece of food. No more enjoying a cup of ice cream with the kids on a hot summer after noon. The need to test, test and test some more. I hate that part. I really do. I think testing is the worst part of having this disease. The need to inject insulin. I hate this too. I hate how my body feels after I bring it back from a low. I hate the highs. It means I have to be more careful at the next meal. I hate no longer being able to eat certain things (mangoes) and rum and raisin ice cream.

My father-in-law has type 2. I remember the first time my sister-in-law called because they were panicked. He was having a “low”. He had a BG of 80. At first I wanted to laugh. I wanted to say, “That’s nothing”. But I didn’t. I remember how I felt when I had my first low (BG of 32). Instead I said, get him some juice and out him on the phone. I talked to him and calmed him down.

What do I wish you knew? I wish you knew that deep down, I really HATE diabetes.

60

I am reading all your comments and crying at the same time. I wish I would have found this site a year ago. Diabetes is so overwhelming. There is so much to learn and know.
I was misdiagnosed as a T2 a year ago. Last week, after trying a lot of other treatments, my Doctor diagnosed me as a T1. In one way, I was relieved. As a T2, nothing worked and I had made many changes in my life (lost a significant amount of weight, exercised, took all my meds faithfully) Yet, I still couldn’t get control. I just knew I had to have done something wrong, but for the life of me, I just couldn’t figure out what. In another way, I felt such a lose and so hopeless.

My Doctor doesn’t understand. I ask lots of questions and sometimes I cry when I visit her, mostly out of frustration, and she says I just have an OCD personality, that things will be fine. She has recommended counseling but I can’t make her understand that I’m grieving the lose of my old life. I know it will get better. What other choice do I have? I seem to think I’ll feel better when my sugars are under control and I’m hoping the Humalog, that I just started a week ago, will do just that. So far, so good.

I hate what this has turned me into. I’m grumpy and tired and maybe I do obsess about it, ok I do, although it’s the only thing in my life I do obsess about. I hate that my family suffers because of it. My 15 year old son, who by the way is a drill seargent when it comes to my exercise routine, asks me everyday what my BGs are. I hate that he worries about it. I hate that everytime I wake up with a low in the middle of the night, my husband is then awake trying to help and yet feeling helpless.

I want Doctors to know that just because they have all the knowlege and it seems so simple to them, doesn’t mean it feels that way to their diabetic patient. Have some compassion for crying out loud! And for Heaven’s sake, take time to answer questions. You are our main resource. I also want Doctors to know that they shouldn’t just assume that because a patient is overweight and are middle aged they are type 2. And please stop telling people that if they just lose the weight, they will have a reversal in their diagnosis. It isn’t always true and it’s devastating when you do just that and you don’t get that reversal.(I had an ER Doc tell me that)
I want everyone else to know that there are some good things that came out of my diagnosis.

  1. I live a much healthier life than I did before. I tell people that diabetes made me make changes to my lifestyle that I wouldn’t have made otherwise.

  2. My niece was diagnosed with type 1 in Jan. If I wouldn’t have already been a diabetic, my sister wouldn’t have realized what the symptoms were and wouldn’t have known what was wrong with her. (She was very sick when she was taken to the hospital and had to be life flighted to a childrens hospital for treatment.) I can’t tell you how relieved I am that she is ok and that maybe, in some weird way, I was supposed to be diagnosed first to help her.

Be kind to everyone you meet. We are all facing some kind of struggle.