Some people on here have responded to more than one of my posts, so for that, I thank you for keeping up on my situation.
This post is about the financial toll that diabetes has taken on my (relatively young) life.
Let’s start at the beginning.
I was diagnosed at age 11 (1996), the second child in a blue-collar family to be diagnosed type 1 within about a four year window.
My parents SOMEHOW managed to maintain enough insurance during those overlapping teenage years to cover our care. Both my younger brother and I had hypoglycemic seizures during the first 5 years or so that I was diagnosed. (He still has them occasionally) My parents are in no shape to support or pay for either of us or our medical care.
If you read my “about me” section, you’ll understand the impact those seizures had on my ability to maintain normal sugars for fear of the lows. I now have neuropathy and retinopathy at age 25 and am finally taking some cautious steps toward bringing myself back into range.
There seems to be no end to the hell I’ve faced in keeping jobs that not only accept my disease but also accommodate it (yes I know all about discrimination laws, but none of my jobs have been worth fighting for, really.)
Between the job difficulties, even with a bachelor’s degree, and the massive medical bills from hospital and endocrinologist visits I was finally able to get temporary state assistance.
Now I have to file bankruptcy because I can’t find full-time work in any field, let alone my major (graphic design)
I feel like a mess and an embarrassment and a failure even though I’m working harder on my disease management than I have in the past.
Does anyone else feel this kind of pressure? This kind of need to just surrender? Is it just the economy… or is it the inevitable with a poorly-managed disease?
Diabetes hasn’t cost me a boat load of money but has cost me my sanity. I’ve been stuck in low paying dead end jobs for many decades and only have a roof over my head and money saved because my folks are still around. I stopped testing my sugars about 5 years ago so I don’t have a stick expense and I order my Insulin through Canada drugs. Humalog costing nearly $35 a vial when bought in bulk. I think its disgusting that they try to take advantage of helpless people and something has to change. It’s bad enough we have the burden of this hell but denied insurance, medical supplies through the roof etc… Its things like the AP project that actually pisses me off even more. They don’t care about making things easier for us they care about a new product that will make them even richer. I whole heartedley wish if something like the AP gets approved no one buys one. Don’t worry though it will all be fine in the end one way or another.
I took type 1 back when I was 10 in the early 70’s I thank my mom and dad for all the insurance they had til I turned 18. Things were high then but now??? WAY HIGHER! I thought nothing of the insurance and money it involved til I got our on my own & got married in 84 then it was heck just borrowing enough money for the insulin and the needles I had to use for shots. WEhen it reallt hit home though was when my daughter became a Type 1 too. Not only were we having to pay for mine but for her’s too. THAT HURT in 99. Now though I did some terriable things before she got it I try and take care of myself because of her and she has given me 3 great grandkids/ Yes it’s really expensive but I will always try. I think that vacation to Hawii is most defantly mine now more than once! LOL!
hi gary.
i know for a fact being stuck without insurance for the last year almost… that you can get a decent glucometer for $14 at walmart. it’s their brand, the “micro” and test strips are $22 for 50. or this one depending on the store:
Yes, god, yes. I am on the opposite end of the spectrum from you - I have a horrible fear of high blood sugars and so I frequently have seizures from hypoglycemia. However, i currently owe about $15,000 in medical bills, and I’m about the same age as you. I keep paying them off, but I get calls every month from hospitals and doctors wanting me to pay them more and more money. And it means I have to stay in the horrible, horrible job I have now, instead of going back to grad school. Plus, I have always had health insurance, so I’d hate to know how much I owe if I’d had limited insurance. (And I owe about $20,000 in student loans. God, diabetes is evil.)
Thanks but bizzarly I get by ok without testing. When I say OK I still get lows and highs but make corrections based on symptoms. I clearly can’t tell my exact levels but feel the spikes and dips and work around it. After 35 years I have a good idea a lot of the time what is going on though yes I can screw up. The truth is testing just shows you at that minute what it is and knowledge is only as good as that last reading. I refuse to become a slave to testing. I don’t have insurance and haven’t had it for years. I am concerned but I don’t loose sleep over it. Thats how they want the system then they will pay for my potential medical expenses one way or another. Fact is if I get heart disease or any other life threatening complication I certainly can’t pay for it. I’m not sure how many more people have to develop diabetes before they consider it a major problem for mankind? I think our potential best shot for possible relief will be Smart Insulin. It would be nice if Dr Faustman could reverse it with a few inexpensive compounds and I still support her but I think the cards are against her.
The cycle is not fair that it is so expensive to take good care of yourself. If you stay in good control it is not cheap but it is less then being hospitalized and out of control. Have you tried to google medical bill grants for diabetics? There may be some grants out there to help cut down your medical bill payments. Good luck with everything!!!
I don’t know what kind of state help you are getting or even what state you live in, but should you want to move South Dakota, although not a metro area, does have a need for graphic designers…and the companies that are looking for them have insurance. We also have State Insurance that covers diabetes 100%. I am on medicaid, because I am disabled, which had nothing to do with diabetes. However, all my meds are $3.00. my diabetic meds, strips, meter, etc are FREE.
Part of the problem is that people are unwilling to ask or to demand help. You pay taxes, or your parents do, and you need to access some of those funds set aside for patient care for yourself. Yea, it’s state help, some might call it welfare, but is your pride or whatever more important to you than your health. Also many drug companies are now giving meds and testing materials to patients who will request them and show need. On this site, under the thread, FREE STUFF, there is a meter, a mini meter that is free. I got one a couple of weeks ago, and it works beautifully.
Much of what you are feeling and doing is because of the economy, some because of pride, and some because we aren’t told about these programs. Get to your computer, and investigate what is in your state if you are unable to move, and find out what is available in your state or help. You are allowing yourself to remain very open to losing your life, because you aren’t knowledgable about the help that is out there.
Gary, do you win when you go to Las Vegas? Sounds like you run your life on luck. Please do not promote this, it is the type of attitude that makes a “diabetes” statistic what work against us all. Sorry to sound so harsh but that is reality when you gamble. I have had T1D for 40 years and currently have a 5.8 A1c and have found that you never can be a slave to testing, it only makes you free from the “guessing” life you can lead without it as I did for 14+ years before I started BG testing. Needless to say, I don’t want to live w/o my pancreas replacement, BG testing or Insulin.
The challenge of not have coverage is unethical and cruel by any standard. The SD system should be a national standard. Let’s write you legislators to demand it ASAP.
The local JDRF chapters often have optional sources for insulin and supplies.
No, it is not just your disease - it is the economy. I had to file Bankruptcy last year and I felt so horrible about it (this was before my diagnosiss which was just 4 months ago). I really thought it couldn’t get any worse. I thought for sure 2010 would be lots better - well, it isn’t so far. I have no medical insurance and had to move back in with my parents and they are helping me. They are pretty comfortable so I guess I am lucky to have somewhere to go. But I still feel like a failure. I never thought in a milllion years this was where I would be when I am 40. Four years ago I was doing great - lots of money in the bank, no health problems, great job, apartment - I thought I was on my way to getting my first house etc. I really fell down that mountain and not only that but into a big deep hole has well.
Although I am not as bad off as you with my diabetes since I am new, the economy sucks. So much competition for so little jobs and people are still losing there jobs too. My brother just found out his is getting laid off too. I feel like I am holding my breathe all the time, just waiting for a call for an interview or something. I have never in all my life had trouble getting a job. I have a Bachelors too - plus some certifications and I finished half my Masters Degree. I have been working for 20 years and I can’t get anything either.
When I was going through bankruptcy, I went on a very helpful forum and I couldn’t believe all the people who owed 10 times as much as I did. Ok, I didn’t feel like such a failure when I saw that. I BK’d a mere $35K and there were people who were over $100K. I was thankful that I didn’t own a house, property or even a car at that time. But like you I couldn’t find a job in time and I ran out of money to pay my credit card bills (and are the creditors helpful? NO!) and I even cashed out my 401K (and I still owe taxes on that). I did everything possible until I had no more back-up plans left and not only am I now left with nothing but I have that bankruptcy on my record. And now, as you may know, employers are using THAT to screen out even more applicants for jobs and now some places are telling the now unemployed not to bother applying for jobs because they won’t get interviews! Horrible!). The funny thing is I am not irresponsible with my money. It is the economy. I have NEVER not paid a bill on time for my entire life (I am 40) until I had to go BK. I have excellent job history and excellent references. But it still doesn’t matter right now.
I can tell you one thing though - bankruptcy helped me learn the truth about creditors and I wouldn’t care if I never owned another credit card again. If you get a change, you should watch the film “Maxed Out” - I think you can see it on YouTube. It is really eye opening.
You do have additional financial problems because of your disease - but I didn’t have them before and I still had to declare bankruptcy because of the economy. So, don’t feel so hard on yourself. You are doing what you can - many people are stuck in your situation now. Me included. If you need any bankruptcy advice, let me know.
Well, when your diabetic you need all the luck you can get! Honestly I’ll continue my way and never have any regrets because I don’t believe I’ll develop secondary complications because I didn’t test. I believe thats at least 50% genetic anyway. As my last endo used to say for some reason some people can withstand the elevated sugars and its probably genetic. For year’s my AIC’s were usually under 9 and that was when I was on two shots a day. I went a couple of years in the low to mid 6’s on multi injections then bounced up again in the high 7’s and low 8’s. My last was 6.5. My point is people that test religiously still bounce from 50 to 300+ not all the time but its just part of the disease and no one is good enough to prevent it. My dad has it also and he checks 3 to 4 times a day and sure enough his sugars run as erratic as the next guys. I am not promoting this to anyone as I stated many times do what works best for you. I also can say If I didn’t feel anything I would certainly test but I’d probably feel much better. Sometimes the minor spikes cause great irritability. FWIW I hear they are real close to a non-invasive meter.
I’ve always had difficultly landing jobs and thats all they were anyway jobs not a career. Its like if you don’t know someone forget about it. I maybe looking into a network marketing thing called Enlyten through a customer of mine who’s girlfriend is also diabetic. Check it out if you like at Enlyten.com. I never went back to school after high school as I never liked school and my folks were uneducated as well. I also had no direction. My hobby became guitar and I’m still playing after 30 years. It’s scary ■■■■ out there and I also suffer from anxiety and panic disorder mainly from my sugar swings its all overwhelming. Sorry to hear you developed diabetes so late in life and your bankruptcy. Are you on Insulin?
Forgive me for being ignorant but how do you get denied coverage? For example I am at the same employer for 3 years and my diabetes supplies are $30 per item. Are you saying that just one day my insurance can say sorry we are dropping you? Thanks
I don’t bounce all over the place. My last A1C was 5.5. I do low carb my Lantus is 38 units at night and if I am below 130 when I eat and do not shoot Novolog. If I shoot it is 3 to 5 units. What causes large swings is eating carbs and trying to guess what dose you should shoot to cover. If you miss yoiu go low and take that as a sign to over eat to cover the low. I do test 9 + times a day and I am type 2, arthritis in my knees and hands, asthma, high blood pressure.
I guess that your luck is that you feel your lows and highs.
When you loose a job they generally offer cobra extension for like a year at your cost. After that your more or less on your own. It’s not that she’s denied coverage for supplies its that she no longer has insurance. As a diabetic the only chance of getting Insurance is working for a company that offers a group policy where no one is denied. No carrier will underwrite a diabetic for a private policy because they consider us too much of a risk. In short we get F******D. Supposedly Obama’s working on fixing that but just like there was supposed to be a cure we’ll see.
No, I am Type 2 on Metformin. So my everyday medical stuff is mostly my prescription (which I get super cheap at Walmart) and I use the Walmart meter. I was testing 6 times a day but since my numbers are always pretty normal (below 120 almost all the time - this is due to my diet), I now only test 4 times a day - unless I eat something new and need to track it.
Yep, I thought bankruptcy was bad - finding out I had D - I never suspected that coming. And being unemployed and having no money and not qualifying for any health insurance makes it even harder.
I had two hospital bills that I was able to get waived as a charity case (something everyone should look into at the hospital - call financial assistance). The less money you have - the more likely they are to waive it - I mean, you have to money to give them anyhow, why would they even think about badgering you further?
What bothers me most is that I had to see the gap in my resume getting bigger and bigger. I am the kind of person who likes to stay busy and like to have an interesting job to keep me that way. It is easy to get really lazy being unemployed and is what happened to me the years before I was diagnosed. I often wonder if it played apart me in developed D at that time. I am almost positive it did. Gee, can I blame my D on the economy than?
Yes, it has happened. Insurers have dropped people (not me, but I have read that it has happened to some people and it happened when they become sick - geez, what a shock, eh?). When I lost my job that I had good insurance with I was very healthy. I honeslty almost ever went to the doctor because there was nothing wrong with me. (this was several years ago -way before D). And the COBRA was unbelieveably expensive for someone who never goes to the doctor. So I didn’t get it. I also was trying to move out of state at the time and thougth I would get a new job soon. Well, the recession started and it didn’t happen. I kind of freelanced and did some work but nothing where I could get or afford any insurance.
And even though I am at probably considered “welfare level” (well, I live with my parents and don’t pay rent but I have pretty much no money of my own at all) - I don’t qualify for Medicaid here because I am not old enough, not disable and don’t have a bunch of kids. If had a crap load of kids - hey, no problems (ok I am being penalized for choosing NOT to have any kids and for being smart and using birth control - not fair- I should be rewarded that the government doesn’t have to pay for additional kids and just me). This is the horrible gap in the US health care system. Even a measley one little person like me - qualifies for nothing. Why? Because the government, when they set this system up, figured that a 30 or 40 something single person with no children would have a job. They didn’t factor in a recession like this.
This is the first time in my life I have ever had a job or health insurance. So it is definatley a kick in the head. When you have that stuff all your life and don’t have to worry about it, you don’t realize how holey the system is here - it like a block of Swiss cheese.
Be thankful you only have type 2 but keep your weight down and minimize carbs or you may in the future end up taking insulin. I’ve always lived at home for the fear of not being able to afford to survive but the preasure is mounting as my folks are getting older and I have will have to face reality that they won’t be around forever. Not sure which is more stressful Diabetes or Financial. Right now for me its diabetes by a landslide. Good luck with your job search and be thankful you have your folks around!
