I'm hoping someone could shed light on this. I've suffered at least 40 severe hypoglycemic reactions where I've been unconscious & needed either the EMT's to administer Dextrose or my husband to give me a Glucagon injection. I'm pretty sure that I've received some brain damage from this (based on my internet searches). I suffer from short-term memory loss as well as some, but not as much, long-term memory loss. I also have a very hard time being able to concentrate & all of this is affecting my performance doing my job. I'm kind of in a fog almost every day until almost noon.
I have a CGM & check regularly. My blood sugar is usually within good ranges, but I still have a hard time just thinking and doing my daily work, which I've done for 14 years. I have hypoglycemia unawareness so I know that I should keep my numbers a little higher than I want, but that's a different issue.
My question is this: I need to know if I can claim disability (I live in Illinois) for this, and if so, what would be my next steps?
Thanks for any help !!!
Hi kiddo8888's. My name is Tony. I'm diabetic type 1. On disability since 1998. For low blood sugar attacks. The first thing is you need your Doctor's support. Second all low blood sugar attacks need to be documented. For me I had three automobile accidents because of low blood sugar and yes when your sugar is low there is loss of memory; of things that happen while under low blood sugar. I have awaken in hospitals with no knowledge of how I arrived at the hospital. Concentration forget it when low blood sugar happens many cells of the brain die because of lack of sugars. I have had bad experiences where I could not find my car at Mall because of low blood sugars and I've been told I become belligerent and very defensive the fire dept documented two different cases where they had to come to my rescue. I you are on public transportation and have become confused and even lost during a low blood sugar attack it needs to be documented. I know it is very hard because while this things are happening you are not coherent and you feel embarrassed to face people and ask for documentation but it is a must. Have you had low blood sugar attacks at work and how has it affect your performance again you need supervisors at work to write about it. Your friends and family also need to write about your condition and their concern for your safety and the safety of others because of your low blood sugar attacks. I was diagnosed and retired on disability due to brittle diabetes is the term of the condition you are having. It comes from controlling your diabetes nearly perfect with A1C levels under 6 which is good but very dangerous because of low blood sugars. The sad thing is that because of many low blood sugar attacks your body becomes immune and you are not aware of it and if someone know you well they will no that you are having some type of problem but for someone who does not know you they will thin k this person is drunk or on drugs or crazy and because you are not yourself when you are with a low blood sugar you can become belligerent or combative and someone could hurt you or you hurt someone. Usually a low blood sugar under 40 is something to become paid attention and my blood sugar has become as low as 22 and that is when your eye sight and your mind are not all together. Anyways many people think it is nothing but just a low blood sugar episode and that is not the case remember everything needs to be documented and it takes about year to two to get it approved I hope you have family for emotional and financial support.
Good Luck My prayers include you
Tony, thank you so much for sharing this with me (us). My doctor defined me as a brittle diabetic, too, so I know your quest to keep your A1c below 6.0 (even though my doctor doesn't want me to be there for obvious reasons).
Nobody knows of how many times I go low (at least one a day under 40) at work becuase my CGM usually warns me. I've only had one incident where my co-workers knew that I was suffering from hypoglycemia & luckily they went to the president of our division and got him to help becuase he's also a Type 1 diabetic. The only thing that I could possibly use to support my work is to show my almost perfect reviews since I started (14 yrs.) ago to my more recent reviews (after at least 37 IV's hooked up to me with dextrose) where it says I'm making a lot of errors now. Unfortunately there's no proof behind that except my written rebuttals stating that the complications from my diabetes are the blame of them. I was on good terms with my manager and she definitely would have helped me in this situation, but since I've been making a lot of error in a "position where I can't make errors" I don't think I'll have her support.
I have woken up to a many firemen in my house or in the back of an ambulance & even on the Las Vegas strip with an IV in my arm. Unfortunately I don't have any documention of most of my EMT treatment for low-blood sugar becuase I almost always refuse to be transported to the hospital. I don't get billed for those unless I'm transported but maybe I can contact the fire dept & see if there's any way to get my records--I really don't think so, but I'll definitely look into that.
Tony, I'm sure we could exchange a lot of hypoglycemic stories -- my situation is is pretty similar to yours. I appreciate your help more than you know & I'm sure I'll have a lot of questions but I'll keep it to a minimum....where did you start the legalities of the disability? Attorney help, county help, or some other agency in your state?
Thanks again, Tony !!! I wish you good health & my prayers go out to you, as well.
Tony, I've got you beat :) my lowest documented BS was 17. But as your advise is concerned, I do understand where you are coming from but I have to disagree wholeheartedly. I do not have experience as far as the disability is concerned, but if it comes to health insurance vs. disability, I'd probably have to go with the insurance.
I would never "disagree wholeheartedly" except for the fact that I tried your tactic and suffered negative consequences. So I lived it and breathed it. I spent years documenting everything. I had all the bloodsugars, times, notes, comments from family, coworkers, even videotaped comments. But instead of working for me, this evidence caused my insurance company to come after me with an argument of "noncompliance." They used the very proof I documented (Citations of low bloodsugars, effects on my life, my job performance, etc.) as proof of noncompliance. They argued bloodsugars were unexpectedly plummeting because I was not "complying" to diet and insulin regimen, as assigned by the endocrinologist. But the rub is, I was complying! My Gp said this was a common insurance company tactic to deny coverage, and any citation of "noncompliance" against a diabetic could unvaryingly be proved because in clinical notes there was bound to be parameters set by the endocrinologist, dietitian, (etc.) that was not totally followed by the patient. I requested several years worth of chart notes and when I read the fine print I found out he was right! Example - my endo said to see him in 3-4 weeks. I scheduled an appointment for 4 weeks. Well, I got dinged for "noncompliance" because in his chartnotes he circled the 3 week box, not the 4 week box. As we all know, it is impossible to be 100% compliant (we do not always have 4 oz. of Orange Juice available to treat hypos, sometimes we make do with cranberry juice!) But my documentation also showed (and shows) 99.9% compliance with all the doc's guidelines.
So while providing detailed documentation of hypo's might prove episodes of hypoglycemia or severity of Type 1 onset, be aware the insurance company (state or whoever you are appealing against) may turn that evidence around and use it against you!
Kiddo8888 and Tony, I wish you both the best. My prayers are with you, too!
Yikes. I am in the same boat, only more hypos than you. I've had at least 40 in the past year alone...so with 24 years as a Type1, I'm probably in far worse shape. My online research yielded the same results regarding brain damage, but I have yet to suffer any noticeable results. Wait, Come to think of it, my debilitating hypos in the past 12 months have gotten SEVERELY worse in two areas:
(1) motor skill recovery timeline - generally when I go unconscious and need Glucagon, my motor skills become impaired, but only for a short time. For the last 24 years, I have regained these skills within 30-40 minutes after receiving glucagon. In the past 12 months this has drastically changed. Now it can take 2-3 hours for me to regain motor skills. THe difference is marked and scary. And when I say motor skills, I do not mean the ability to balance well, use tweezers or do a DUI test... I mean I couldn't make the basic movement of propelling my hand reach up and touch my face. And I could not command my thighs to movement (much less my feet or calves)
(2) One side of my body is far more drastically impacted. The entire left side of my body will be dead...for hours. One side of my body regains motor skills quickly and the other, no recovery for long periods.
So I am curious about the same thing you are. What other things might have been impacted by all the hypos? I do not have the difficulty in presence of mind or concentration that you do, however. At least not yet. But I also would love some feedback from the community. You are lucky that you have a pump or a CGM, though. My insurance company has denied me every time I've tried.
I would think that your insurance company would smarten up and realize that one visit to the ER in an ambulance costs more than a CGM and at least 3 months worth of sensors. My life has been markedly improved since I have the Dexcom and my insurance didn't even balk at the cost, covered it 100 %. I have been type 1 for 37 years and this is the first piece of D technology that I have gotten besides my meter.
Lucky you. My insurance company covers authorized diabetic DME (durable Medical Equipment) at 50% of cost. And of course, I did not get that authorization. But even if I did, what is messed up is, the patient is liable for 50% of RETAIL cost, and insurance company is liable to 50% of CONTRACTED costs. And diabetic DME's (this category includes both the machines themselves and maintenance equipment) do not count when they calculate the catastrophic clause (that is a standard clause in health insurance policies that provides for when the patient has over say, 5K in annual copays. If this happens, the company begins paying for 100% of treatment.) My insurance excludes diabetes DMEs or supplies from this umbrella clause.
Regardless, visits to the ER are as costly to me as they are the insurance company...so I've gone all out to avoid them. When I say costly to me I mean in emotional and physical energy, time and copays. 9 out of 10 times (maybe 99 out of 100) myself and/or my family can respond more quickly, with far more knowledge and with responses more tailored to my needs than any ER personel I've ever come in contact with. (And I've come in contact with more than I can count.)
So my insurance company's cost/benefit analysis for my case is stips, insulin and needles + 3-6 glucagon shots/month VERSUS the same strips and insulin, plus pump needles (do they call these cannulas?), pump tubing, cgm sensors + whatever else is required to maintain pumps and cgms.
While glucagon shots are expensive, my calculations show them to be far less so than supplies for a pump and cgm, especially when the company's contracted rates are taken into account. And even if we are only talking CGMs and no pump, I think the monthly maintenance is still higher than the cost of glucgon shots.
Long term, though, your argument makes sense. Long term impacts of such unstable glucose levels have the potential to be vastly more expensive as I get older and develop more complications.
Like I said, I am very lucky that my insurance is very comprehensive and provides 1100 strips/90 days and now a sensor every 7 days. The strips cost me $ 20.00 a month but the sensors cost me nothing and the transmitter and receiver were also covered 100%. It is incompehensible to me that insurance would put any kind of limitations on these life changing and in reality life saving pieces of technology. I don't have a pump more because I don't want one, but insurance would also cover that as well. Short term my argument makes sense. And while it is fortunate that your family/friends can give you a shot of glucagon a few more emergency room visits might strengthen your case. ( I can't even believe I said that. )
I'm wondering if your company is big enough to have a human resources department with someone who would work with you and social security or state resources to give you a soft landing after being laid off from employment. Perhaps they might give you time off to get over to a social security office - call ahead and get an appointment with a counselor - and find out what you'd need for documentation, to get the ball rolling, and to ensure it's timed right. There are psychologists who do neuropsych evaluation and document disability for $. The idea would be not to lose your job till you have disability ready to start and in this case the company would share the cost of the evaluations needed by social security/state disability offices. It seems if you are making errors your boss should be happy to help you.
I think the "low record" sort of depends on the meter as I was shocked to see single digits on my OneTouch UltraSmart a few times. I've switched to a UltraMini and that doesn't seem to register the lows quite the same.
kiddo8888's: I'm 47 years of age. I became a diabetic type 1 in the 1n 1987 three month's after my Honorable discharge from the US Marine Corps. I always worked much of my life. I graduated out of high School at the age of 17 because I never went to Kindergarten and started the first grade at age five. My parents gave the consent and enlisted at age 17. After I work IBM, USDOL, USHHS-FDA, and many other places. I'm retired on disability since 1998. Every so I have to submit documentation from my doctor as to my diagnosis and has my condition been cured. But anyone who has a low blood sugar episode where they has awaken in a hospital with no idea how they have gotten there or has been lost in a parking lot at a mall that they are familiar with or has been in a car accident and swear that they are not responsible for the accident or has been combative with family and friends because they are on a defensive role and not accept low blood sugar episode. Low blood sugar/hypoglycemia is nothing to be played with many people get to low go into a coma and die. They are many people who may think differently but trust me if you are having hypoglycemia attacks they do not get better but worse and you can end up truly hurting yourself or some innocent citizen that has no idea of what is happening or killing yourself or someone. Again start getting things documented and yes the Fire Dept. keeps records of everything even if they you choose not to be transported to the hospital they keep records. Talk to your doctor and ask for copies of your medical records and explain your needs and see if he will help you.
PS. I have my health coverage through FEP Blue Cross & Blue Shield Standard plan and my monthly annuity is $1349.00 through the Office of Personnel Management
I've had pretty bad hypo attacks and they seem to have gotten better. That may just be me though.
Hi , i am a new member to this Group and have been diabetic from last 20 years on Insulin. I used to have Hypos almost every week and had to call paramadigs everytime and than i changed ma nite doses of short acting and long acting insulins and yes Doctors say if you are diabetic for long you loose the sense of getting into low sugars. however if you continue maintaining good levels for almost 6 months you can get the same back.
i check ma sugar min 4 times a day and than accodingly take ma injections, i have also had these memory loses but thank god have not gone so severe.
i m really learning a lot being here NOW, thanks to ALL.