The financial toll of diabetes
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?
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?
Replies to This Discussion
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Permalink Reply by Gary on -
Kim,
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 shit 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?
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Permalink Reply by KimKat on -
Hi Gary,
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? :)
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Permalink Reply by Sagwabetes on -
Thank you, Kimberly.
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Permalink Reply by Rich on -
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
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Permalink Reply by Gary on
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Rich,
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.
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Permalink Reply by Rich on
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Oh ok thanks for clarifying. But I thought I read or heard that insurers can drop you even while you have insurance. I could be wrong though.
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Permalink Reply by KimKat on
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Rich,
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. :)
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Permalink Reply by Gary on
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Kim,
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!
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Permalink Reply by KimKat on
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I am, Gary. I think they like having me back home. haha! My dad is a big worrier and even though I am 40, he figures if I am here, he won't worry about how I am doing so much. :)
If I didn't have here to come back to, I would still be stuck in a crappy relationship that I didn't want to stay it, just because I needed a place to stay. Other than that, my cats and I would be out on the street - begging for Cat Chow. :)
I am doing very well with my D so far. I had a 9.2 A1C at diagnosis 4 months ago and cut it down to a 4.9! It mostly due to my diet. Yes, Type 1 have it so much harder. I am dreading the day when I might have to go on insulin. I am hoping to forstall that for as long as possible.
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Permalink Reply by Gary on
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Kim,
Mild type 2 is very manageable if your willing to stay on a strict low carb diet. Type 1 though offers more flexibility with food it can be a nightmare for many cause we have no help of our own insulin secretion and injected insulin results can vary. If you feel relatively fine count your blessings. I suffer with both physical and emotional distress from the sugar swings and I spend much time depressed and worrying about everything. Hopefully if and when the time comes that you may need injections Smart Insulin will be available. If you haven't heard of it its a self regulating insulin which may offer us a life of normal sugars on a regular basis without walking on eggshells all the time. I am also hopeful something like Dr Faustmans plan works out in reversing the disease cheaply but its likely a long shot and even if it prevails quite a few more years off.
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Permalink Reply by KimKat on
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Hey Gary,
Yes, I am comfortable with my diet for the most part. I am sure I will slip every now and again but with an A1C of 4.9, I am assure by the lovely members of this site not to worry about a few highs. I have a lot of willpower when it comes to diet since I am used to modifying my diet as I have been a vegetarian for 20 years (and now a vegan). :) I guess I kinda had a head start in that department.
Hmm, interesting you mention the sugar swings because I still have some mood swings even though my sugars stay "normal" - although i read that woman with diabetes will have more moodiness - it might be hormones though. Although, right after diagnosis, before I went on meds and got my sugar under control, I had extreme mood swings, I think it might have been because my eating was all screwed up until I figured this thing out.
And worry? Whoa, I am the queen of worry! I have always been a big worry-wart - diabetes or no diabetes. It is exhauting. It is something I am used too though. My family are worriers too - I think I learned it early in life. So don't "worry", your not the only one out here frettin' away.
Yes, I have heard of the Smart Insulin. I too hope that things will get better in that vein. Even better, why can't they just figure out what causes this and find a way to reverse it? I know it is a complex disease but I honestly can't believe they haven't gotten further than this with it yet. I was shocked at the antiquated methods for this disease which is apparently an "epidemic".
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Permalink Reply by hiroze on -
i've been on and off of insurance for years. without getting into details about it, i've been able to manage having insulin, but not always testing supplies. i also moved around a lot, between 2007 and 2010, i've moved over 20 times (for work and life style related reasons), meaning i've had to see new doctors to get prescriptions/samples, which meant dealing with lectures from doctors. -_-
it has been pricey and i've had to sacrifice normal things to make sure i had money for insulin. it was a struggle for a while, but i eventually came across dr. bernstein's diabetes book and after reading it, i developed a better understanding of diabetes. using information in the book, doing medical research (i mean TONS of it), and experimenting on myself, i can now live with using very little insulin if i needed to (which i will in another 2 years for a short while). testing is important, but if it has to be sacrificed, routine is what will help you maintain sugars. if you eat the same thing every day at the same time and do the same kind of exercise, your sugars should fall into the same range (i do realize that stress, colds, other factors can affect sugars, which is why i said the same range). as bland and boring as this sounds, when you're against the wall, this is one of the few ways i know to do it. i have no one to lean on other than myself so the times when i've had to do this, i did kind of feel a need to just surrender, but eventually things got better.
diabetes is the bread and butter of the medical community and not to get all conspiracy theory, but i know there are advancements that could alleviate a lot of costs for us, but industry is rather corrupt so i try to be as self reliant as i can.
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