That's not to say I ever feel great about diabetes, after all it's been doing it's best to kill my daughter for the last few years, but today I learned one of my dearest D-Mom friend's son was in intensive care due to his diabetes. I'm tired of this disease, I'm tired of what it does to our kids, so in an effort to vent my frustrations I decided to write a 10 Reasons Diabetes Sucks list.
Reason #10 - LACK OF PUBLIC EDUCATION
With so many types of diabetes out there you'd think we could have some more differentiating names than Type 1 and Type 2. I've even heard of adult onset T1 referred to as Type 1.5
Really?!?
I have loved ones with Type 1 and Type 2 Diabetes and it really kind of ticks me off that they're all clumped together in the public mind. Both can have devastating affects on those afflicted and each should be identified as a separate and unique condition. Two fellow D-Moms are working hard in an effort to get the names changed and I'd really appreciate you taking a moment to sign the on-line petition by clinking HERE. (Thanks for all your hard work Jeanette and Jamie!)
Reason #9 - UNCERTAINTY AND NEVER ENDING FEAR
I am a very confident woman, but there have been times when my uncertainty regarding a diabetic related issue has had me in tears...and we're 8 years into life with the big D! I remember what it was like when Brandi was newly diagnosed and I see those same fears everyday in my interaction with newly diagnosed families.
Reason #8 - CRUEL ADULTS AND CHILDREN
Diabetes is a lot to deal with by itself, but when you add cruel people to the mix it will drive you crazy. Children who refuse to interact with your child, complain about "special treatment" such as extra snacks or trips to the nurses office, or ridicule them because of their illness. And then there are the adults who THINK they know about diabetes but don't have a freaking clue about the reality of living with diabetes.
Seriously, if one more person ask what we did to "cause" Brandi to get sick, tells me her diabetes is curable if she would only (fill in the blank), or tells me she shouldn't be "allowed" to eat certain foods I may lose mind! No one "caused" Brandi to get sick, it was nothing we did or didn't do...it's a freaking autoimmune disease people! We're no more responsible for her getting diabetes than a fork is responsible for a person gaining weight.
Reason #7 - CARB COUNTING
The majority of diabetics who are insulin dependent must count every single stinking carb that goes into their body in order to figure out the correct insulin dose for a meal. You'd think it would be easy but it's not, mostly because of the poor nutritional information available for the foods we eat. Getting a correct carb count means measuring and weighing each portion of the diabetic's food. This can be a real problem when dining out since the majority of restaurants have no idea what their food's nutritional values are, and it's a big headache when making meals from scratch at home. Let's not forget birthday parties, school parties, slumber parties, dinner at friend's houses, teenagers eating at a mall....sometimes it's just impossible so we guesstimate...and more often than not we're wrong.
Reason #6 - NEEDLES, TEST STRIPS, and CO-PAYS
Diabetes is expensive...and by that I mean diabetes is REALLY expensive. We're lucky because I have decent insurance and Brandi now qualifies for Medicare due to her disabilities, however there was a time not so long ago when that wasn't true.
When Brandi first became insulin resistant she was on an insulin pump, a handy device but one that takes quite a bit more fast acting insulin than the combination of fast and slow acting insulin that are taken by injections. She took so much insulin that my insurance wouldn't cover it all so every month I was paying for 2-3 bottles of insulin at over $300 each. There were a few years when her co-pays for doctors and medications were $800 a month, EVERY month...sometimes more. I'm a
9-1-1 Dispatcher so needless to say I don't make a hefty salary...I don't know of anyone in emergency services who does. This meant I had to work overtime...a LOT of overtime...which took me away from my sick child. It was a no-win situation for us.
Then there's the needles and test strips, we go through an average of 8000 test strips a year..when you consider a bottle of 50 test strips cost an average of $50 you can see the problem. The other problem with test strips is that you find them EVERYWHERE! Clinging to your clothing, on a car seat, in your bed, the washing machine...we even found one in the refrigerator once!
Reason #5 - MOOD SWINGS
My daughter is one of the sweetest most caring people you'll ever meet, but if I'm being totally honest I have to tell you there are times her mood swings are so bad I want to hug her till her tongue turns black. Okay, not really...but you get the point.
When blood sugars are out of whack our beloved diabetics can get mean...really mean...and sarcastic...and weepy...and did I mention mean? It's not their fault, crazy blood sugar levels can take a mild manner person and turn them into someone unrecognizable.
Reason #4 - HIGHS AND LOWS
I've said it before and I'll say it again...Diabetes has no rhyme or reason, it simply doesn't follow the rules.
Sometimes watching my daughter's blood sugar is like watching an extended tennis game with her blood sugars volleying back and forth...she's high, she's low, no she's high again. This can happen several times throughout a day and it really wears them out.
Extended high blood sugar levels cause so many long term health problems for our diabetic loved ones; blindness, amputations, kidney failure, significantly higher risk of heart attack or stroke. Low blood sugar can cause seizures, loss of consciousness, and cardiac arrest.
Reason #3 - NEUROPATHIES
A well controlled diabetic may go years, sometimes even their whole life without developing neuropathies, but that's not the case for my daughter.
Brandi has two types of neuropathies; Autonomic (which affects the nerves that control the involuntary functions of the internal organs) and Sensory (nerves discharging spontaneously on their own causing her to feel things which are not truly occurring.) For Brandi the sensory neuropathy
causes burning pain or a sensation of walking on ground glass, orfeeling knife-like jabs in the legs.
Watching my daughter suffering with so much pain is sometimes more than I can bear.
As mentioned in Reason #4, blood sugars can rise or drop quickly and sometimes for no apparent reason and blood sugars are infamous for bottoming out while our children sleep. This means we parents check our diabetic children often...which means we don't sleep more than a couple hours between nightly blood sugar checks. Some may say we are hyper vigilant...and they'd be correct, but I'm okay with that because we're talking about my kid's life.
And the #1 Reason I hate diabetes is...DEAD IN BED SYNDROME
I think this is what all of us D-Moms and Dads fear the most. We kiss our child good night and go to sleep secure in the knowledge their blood sugars are within range and when we check on them during the night or in the morning they're dead. We believe, although I don't know if it's ever been proven, that dead in bed syndrome is due to a cardiac arrhythmia induced by low blood sugars during our child's sleep. THIS is the reason we don't sleep all night...we're standing guard and making sure our children wake up in the morning.
Most days we grudgingly accept the changes diabetes as made in our families but sometime when our kids are sick, when we're so tired we cant complete a simple sentence or when we see the dreaded blue candles being displayed signifying the loss of another within our community we can't help but cry out , "Diabetes you SUCK!"
Hi Tanya -
ReplyDeleteI'm writing because I've had Type 1 for 30 years and have had a relatively normal and active life (which wasn't a real certainty when I was diagnosed). Parents used to be scared to death from long - term complications. Now that that's much less of a reality, they're scared of dead in bed.
I've known thousands of people with type 1. Most of them are like me - all grown up with kids. Most of them are healthy, active, and have survived going away to college. Some of them have complications that existed upon diagnosis, some have complications that followed a lot of difficulties. I only know of 1 young man who died in his sleep - yes, he had type 1, but I have known more young people than that who died suddenly of other things.
The mainstream media (and to some extent JDRF) is exploiting the syndrome. There is a much higher chance of having a seizure (though not of having cardiac arrest during a seizure - that chance is small) and of DKA. I went 30 years without hearing the name dead in bed until someone started blasting it on Twitter. It's only useful to know of the syndrome if it points you towards a means of preventing it.
To put your mind at ease, as well as to make some improvements for Brandi, you might consider pump therapy and continuous glucose monitoring. I'm not sure about your insurance situation, but she is a candidate for approval because of the neuropathy. Pump therapy drastically reduces the number of both lows and highs while making it much easier to get the target A1C. It also prevents a very common cause of nighttime lows - confusing short and long acting insulin bottles, as it only uses one type of insulin. Continuous glucose monitoring sets off alarms if you glucose drops. I don't know what treatments Brandi is getting for neuropathy, but that is considered to be somewhat reversible at this date. Might be worth a through med journal search or a second opinion from different provider. (I go to a leading diabetes clinic, and I reversed nephropathy - previously known to be irreversible - using a vitamin treatment found to be effective in a small group study, even though the clinic told me there was no way to reverse it).
One more thing - the mood swings. You might be letting your daughter off the hook too easily :) Give some leeway for anger / being short of temper because diabetes sucks and is tough for young people to deal with. However - don't giver her a free pass. Mood swings are rarely due to blood sugar changes - although some quick dropping lows or excessive highs can do it. The best thing you can do is to help her learn to manage the stress and deal with the feelings of having to have diabetes. She has extra anger / loss issues to deal with because of the neuropathy. Part of having a long, normal, full life is going to be learning how to deal with that without taking it out on other people.
ReplyDeleteGood luck!
Thank you for writing this. As the mom of a T1D, 13 year old (two years diagnosed) - it brought me to tears. I'd also like to print it out and staple it to the forehead of everyone in the school district. ;-)
ReplyDeleteHello I got t1 diabetes when I was 9 I'll be 13 soon enough. Your list is spot on
ReplyDeleteHi, I got T1 diabetes when I was 3, and I know how hard it is to have diabetes... I am almost 11 now.
ReplyDeleteThank you so much for this. I have been dealing with T1.5 for the last 10 yrs and, as you said, sometimes it really SUCKS. This was a nice rant that makes me fell that It's not just me. Thanks again
ReplyDeleteRelax! - This is the End of all Diabetes Fears, for the Demise of the Diabetes already is a fact - Diabetes (any type of) and any other diseases can be wiped out in less than a month - Everybody will become Infinitely Healthy and by that even Immortal - By doing my discovery (just an exercise for a minute a day) - My WVCD - The Weapon of Virus and Cancer Destruction, that cures and prevents any diseases, known on Earth, even Aging and Radiation disease, for every cell of our bodies is shielded 100% from any external/internal (genetic) detrimental impact - My blood sugar level is 300 mg/dL (normally a killing level), but I am not sick of Diabetes, for I cannot get sick of it, or of any other diseases - I will describe my WVCD to everyone, who sends me an e-check for one million US Dollars (money can be negotiated) - Doing my discovery for just a minute a day, everybody will stay absolutely healthy all the time, living their Endless Lives, for Infinite Health = Immortality.
ReplyDelete