What has this disease cost you? Monetarily, that is a given. But what about the cost you can’t calculate? ie physically, emotionally?
Well, I think that it has cost me plenty…physically after 16 yrs of this D has worn me out more than I really want to admit. I think because when I was D’x my daughters were soooo young and it was a challenge to take care of them and myself. I then had the resposibility of taking care of my grandmother, father, and mother on top of it. Which at the time I really didn’t put myself on the top of the list…so I ran higher sugars than I should have. I had to quit my job here recently because I could not keep up with the “pace” anymore (caregiver/elderly). I had too many people counting on me and I was, once again putting myself last. Emotionally…I think I am better now than years ago…quite depressed after my Mom passed in 2004, from complications of diabetes.
I have my ups and downs emotionally regarding this diabetes…but, I now seem to look at it different…if I survived all those prior years without any complications, and I am doing soooo much better with my bs control, I have alot to be grateful for and I am pretty happy I am here and able to learn from my mistakes and past circumstances.
I just need to find a job that I can manage and still take care of me for a change! I will and look forward to the new phase in my life!
I could tell you ALL about the monetary costs! I was uninsured since May 1st of this year…and it’s cost me a butt-load. Tons and tons of money.
When it comes to the non-monetary costs, I have paid the price when it comes to the emotional suffering. Diabetes is such a constant thing…and diabetes management is something that you just can’t take a break from. That’s daunting at times.
I’m also sad that after my diagnosis, my relationship with one of my best friends and loved ones has changed…I’m talking, of course, about my relationship with FOOD. There was a period (when I first started injecting insuilin) when I seriously FEARED eating. I was afraid of how dinner was going to make me feel (either physically or emotionally), and that fear of something so essential lead to minor depression.
Like Robyn, I have my ups and downs…and we could talk (maybe in another thread) about all of the positives that have been introduced into my life thanks to the big D.
Diabetes is a time suck with diabetes doctors’ & education appointments, prescriptions and supplies to pick up; bs and food record keeping; and increased time food shopping (label reading for carb content). Physically, weight wise, I’m in better shape than past several years; however, before diabetes, I didn’t have any health problems, such as high blood pressure, but I was borderline. Emotionally, it’s still hard to accept I have a chronic disease that likely will decrease the quality and length of my life.
It has cost me: studying abroad, my 23rd birthday, joining the Peace Corps, A’s in a few college classes, a healthy relationship with food, time spent sick instead of with friends,10 pounds, far too much money that would be better spent on margharitas, this summer that will be spent working 3 jobs instead of going to Guatemala, feeling peaceful and safe in my own body…
well put…
When you get diagnosed they tell you you can live a perfectly normal life. Then they start adding the excepts.
Ivan!
I can only answer for my niece, who was diagnosed at 8. She has accepted her diagnosis and the restrictions. As far as I am concerned, Type 1 has cost her a carefree childhood. I don’t think this is the way for a child to have to live. I realize, after seeing children recently in far worse shape, it could be much worse. We tried to get life insurance for her (knowing it may be a problem). She was denied. She will never have freedom in choosing employment (can never be uninsured for more than three months). The added burden of medical costs and copays, possible discrimination. I do think advances will arrive, making control less of a burden. At least, I hope so.
It has cost me almost my relationship with my boyfriend due to my mood swings, almost 20 pounds uhg!, not being able to stay over at friends house like normal kids do, not being able to go out of town in school trips, cant go camping!, it has cost me MONEY, time and the frustration that i could not be able to have kids if i don’t take care of my self and have a happy family
Giving birth to my children where I wanted to (at HOME!) 
The cost can be read in so many diabetics eyes. As you look at the pictures people put on this site they may smile but their eyes are almost always sad. Even when we are happy we are worried about something, sugars, bolus, supplies, etc…
Or maybe that is just what my eyes see.
i have never had insurance that has covered my diabetes, so i’ve gone to docs that have made me feel like i’m wasting my time which in turn has kept me from being healthy. I didn’t have money for insulin for a while, and the diabetes educator that supplied itgot to the point where she couldn’t anymore. The lows have caused me to oversleep so much that i’m still tired and i still want to go to bed. My job only gives me 15 min’s to eat at work so i have to rush to get a meal in me and try and check my sugar/take medicine. Emotionally i still feel alone, i don’t have a “medical team” nor do i know any people around here. It’s also cost me a bit in relationships with others, especially the younger crowd who likes to party and do drugs… i say no thanks i’d rather be alone. Emotionally it’s a bother alot, and it’s physically demanding on the body (utis, zapped energy, my house has suffered in chores lol ,skin infections, etc…), also it’s financially demanding as well (er bills, old doc bilss, etc, supplies), which can be very stressful on everything else. It sucks but we make the best of it right? Also paranoia, i feel like i have to set things up like errands around my eating and testing. I feel like if i don’t then i won’t do my testing, and then it makes the errands i have to do seem so much harder to accomplish. Even things like going back to school seem like to much of big task, with all my bills i just don’t want to add anymore, i can’t imagine juggling school,work, and diabetes. I’m not that good.
i took care of MRDD in their homes for a while. It was really hard and easy. Very stressful job to the point even just sitting down all day (they didn’t like to do very much) put me on edge. The house could flip into choas in a second, so i was always prepared. I haven’t had my heart race so much! I gave up taking care of myself because i was constantly needed around every corner. it was a interesting job, but i need something where i can leave work at work.
I feel like diabetes has cost me:
time - going to dr.s visits, trips to the pharmacy, checking sugars, giving my insulin, recording EVERYTHING I eat and all my bgs.
money - as all of us know, diabetes is EXPENSIVE
confidence - I feel like it kinda put a damper on my confidence. I hate to say it, but its true.
friendship - my best friend kept hounding me about what I was eating when we were out at a restaurant. It bothered me so I told her how I felt. I tried putting it gently, but yet not sugar coating the truth. I have yet to hear from her since.
happiness - some days i feel like giving up. we NEVER get a break from this and at times it’s just too much.
agreed!
I know that diabetes has cost me a lot - but once I went to an Endo who recognized me as a type 1 versus 2 & put me on insulin - and I discovered I really could feel human again - I have always felt that there are a lot worse diseases that I could have had. I am just thankful that I was born in this time period where insulin & home bs testing are available. Type 1.5 seems to run in my family - my great aunt (diagnosed in her 30’s) was one of the first people in Illinois to use insulin - but I know of at least one other relative who developed it before insulin and died young due to complications.
Once I started insulin, I have always kept my bs in good control (even before the studies that showed how important it was) - I knew I felt better when I did. But I am not fanatical about it - I try to keep my A1C under 7 - but I get too many unrecognized lows if I go much below 6.5 - so I don’t aim for the 5’s that some of you do (though I do admire you for being able to do it). I try to only eat complex carbs on a regular basis - but I do allow myself to eat the forbidden sugar-laden foods on occasion & can usually cover it successfully with insulin (pumping for 12+ years). I think this allows me to feel that my diet is not that restrictive.
I don’t think that diabetes has kept me from doing anything I want - though I admit that it is sometimes more of a hassle - pregnancy & birth is certainly more work for a diabetic mom - but still doable & worth it (2 of my 5 children were born after I was correctly diagnosed & put on insulin & 2 others while they were still considering it gestational and/or type 2. I nursed all of my children (again more of a hassle - especially when they WANT to eat when you NEED to eat) but had the added side effect of my requiring less insulin - I assume due to the fact that my body was using so much energy producing milk).I worked at least part time most of the time I was raising these kids - I have camped & hiked & traveled - including a trip to Europe a couple of years ago.
The ‘great’ thing about diabetes is that it is controllable - yes I have to test my bs more often when I am hiking or even driving long distances - yes I have to keep a quick supply of sugar available at all times (my biggest diabetic problem is unrecognized lows) - yes I have to watch what & when I eat - yes I get frustrated when I have lows or highs that I can’t explain - yes MDI was a bother - but a pump makes life so much easier - but I guess I see diabetes as a challenge & I feel I am winning the ‘race’ - I have been diabetic for 33 years & have no complications except slight lose of feeling in my feet (I don’t notice it - but my doc does when he examines my feet). And I rarely ever see my doc for anything non diabetic related - because I am rarely sick. My control has not always been as good as it should be - I suffer from depression unrelated to my diabetes & when dealing with that my A1C’s are closer to an 8 than a 7 - but apparently it has overall been good enough to keep me healthy.
Sorry for the long, maybe rambling, message. I have a several friends with MS (for some reason it is more common here in the NW) & a good friend just went through treatment for breast cancer & seeing them just makes me realize how lucky we are that we have a disease that we can have so much control over. And I know you long term diabetes like me appreciate all of the advancements that have come in recent years. (now if I could just get my insurance to pay for CGM life would be almost perfect). But all in all, I don’t feel like I have it too bad & like the previous poster said, I don’t feel sorry for myself in the least!
No, I agree. We are a very “deep” group of people because we see everything for what it is, and the threats that things can potentially be. There is barely any innocence left.
Yes. No breaks! That’s the most frustrating for me. I get TIRED sometimes where I JUST DON’T WANT TO DEAL WITH IT for atleast a DAY. It doesn’t seem like so much to ask for, but if it weren’t too much to ask, I’d not be alive anymore… to be able to just FALL ASLEEP without worrying about an injection… ahhhhh, the sweet life it is.
Sorry for myself? Well maybe a little. But I agree there are worst things to have. I often say, I would rather deal with my ##** than any body else’s. However, recognizing cost is reality. There is a cost to owning a dog that barks, and a cost to diabetes. I need to go quiet my dog.
Life is good, lets live it!
Okay okay okay… I have long considered myself “lucky” in terms of diseases because atleast mine is treatable, to an extent. It doesn’t always end up being “fatal”.
But, on my more negative days, here are the costs:
I feel restricted.
I am afraid to have children because of the chances of death to myself or in harming the baby during pregnancy. I want children more than anything, but I’m afraid.
I can not defend my country in battle- because they told me that T1 will inhibit my ability to fight. “What if you go low while in battle? Are you going to stop defening yourself so that you can eat a cookie?” is what they told me.
I feel afraid almost all the time. If I feel sick, I check my BG- If I have a headache, I check my BG- If I feel extremely sleepy, I check my BG. I can’t tell if I’m ever just feeling “under the weather” or if I should be afraid of something bad happening because of T1.
I want to say that T1 has cost me friends, but really, if someone can’t deal with my disease even when I’m dealing with it, screw them. They’re not real friends anyway- so scratch that.
Confidence. I have bruises all over my legs, scars on my stomach, water weight around my insertion sites. I’m afraid that people can see what’s wrong with me by looking- even though the smarter side of me knows that they can’t.
Life. I have had many medication complications where the types I was on just didn’t work for me. Antibodies, allergic reactions, etc. I’ve been hospitalized so many times and none of it was my “fault”. Being so close to death on several occasions, I’m sure has cost me a few years of my life in the long run.
My family. Every time I was hospitalized, I could see the pain on my father’s face, even though he was trying to be strong. I can see the stress in my brother’s body language because he wants to protect me- but from a monster that he can’t see. I can see the worry lines around my sister’s eyes and the hope that she can help, but only in ways of educating others, not in ways of finding a cure to fix me. I can see the guilt in my mother’s eyes because for some reason she partly believes that it’s her fault that I’m the only child that is sick. I can feel the worry in my fiance’s embrace when I tell him that I can’t get my BG down or that I’m afraid or that I am tired.
But, diabetes has given me some things too. I have the know to eat things correctly. I was borderline anorexic/bulimic for two years. I would go weeks without eating a thing, and if I did eat, I would go to the bathroom within and hour, stick a spoon down my throat, and puke it back up. Disgusting, I know. Diabetes has forced me to control what I allow myself to do to my body. I have to take care of me, or else I won’t be here for very much longer.
Diabetes has also given me the ability to care for others who are sick. Empathy. Because I’ve lost so much, I can definitely understand why someone else would feel badly about losing something too.
Diabetes hurts. So many other chronic diseases do too, though. T1 has cost me a lot. The fact that it’s never going to stop costing me is the part that hurts the most.