Necessity Vs Luxury
On April 28th, my sweet insurance that I’ve had for the last 20 years ended. For the last 3 years, I’ve been paying COBRA to keep my sweet insurance. It was a sweet deal that I have no clue how I got but it was well worth the insane bill each month ($500).
My sweet insurance paid 100% of my pump supplies, 100% of my sensor supplies, my doctor’s appointments were only $20 a pop, I never had to pay for lab work, a visit to the ER was only $25, and admission to the hospital was only $100 (which is really sweet when you come out and there’s a $10,000 bill attached to your stay and you only had to pay 1% of it), oh, and the ambulance rides I got to take…I didn’t have to pay for those either. Prescriptions, $20 or less (which is really sweet when it’s 300 test strips that we’re talking about that would cost the uninsured person $1 a piece).
Sweet insurance, that’s what I had.
Now, I have not so sweet insurance, all durable medical equipment (i.e. pump and sensor) comes at a high cost to me, something ridiculous like I pay 80% or some such. Which isn’t 100% but when you go from free to having to pay, it’s a lot (I’m not complaining, well, I might be, it’s difficult to say).
Anyways, I might have slightly been complaining about crappy insurance when my mom piped up about my pump and sensor being luxury items. They weren’t needed, they were just wanted. I argued “need”.
Her point was that I could live just fine on shots, that the pump was luxurious and not a necessity. Necessity being anything that was needed to keep me alive. The sensor was an item of high luxury.
And then there’s me: the pump keeps me alive better than shots because my diabetes is better managed and therefore I’ll live longer therefore it’s a necessity. And the sensor, the whole reason it exists is to tell me when my blood sugar is low which eventually wakes me up in the middle of night, thus I don’t have seizures, thus I’m living longer. They’re not items of luxury, they’re necessity.
And then I got smartalecky: it’d be like saying finger pricks are a luxury because I could pee on a stick to guesstimate my blood sugars.
Ketones, Ketones, And More Ketones
April 17th, I wake up, I’m dehydrated, I’ve got a belly ache that would reflect the belly ache of a beast, or maybe it’s more accurate if I said I had a beast with sharp nails clawing at my insides inside of me…did I mention I was dehydrated, like, couldn’t talk without the tongue clicking dehydrated…Blood sugar was 360. Ketones were MASSIVE. I don’t think they have a label for the color of purple that was on the pee stick.
I get up out of bed. Take a shot. Look at my pump, it was still plugged into me. I was fine when I went to bed the night before 113. I was irritated…there was no good reason for this nonsense…actually, I was straight up angry…I didn’t do anything to cause this…no unusual foods were eaten before bed, I had insulin in the pump, it was connected, my site was only a day old…basically still fresh considering how many days some of us wear those things…
I wasn’t out of bed but a few moments before I was worshiping the porcelain god. I’d been there done that. I knew this was bad. This was trip to the ER bad. I was vomiting up the acid from my stomach, nothing else, that stuff is nasty. And then of course, like the idiot I was, I drank water, which I knew I couldn’t keep down but I was so thirsty and so it was like I was in a boxing match, almost being KO’d each round, repeating the same thing over and over again. And then it finally did KO me. I was lying on the floor of the bathroom, with no energy to move. It was bad, I should’ve gone to the ER.
But, I didn’t go to the ER. I was going out of town. I didn’t have time for the ER. So I showered, changed my pump site, packed my car, and went to walmart, for the most disgusting stuff ever. Pedialyte. How kids drink that, I have no clue. It’s pure sugar. It’s so nasty.
I’ll fast forward through the rest of that day. It took 14 hours for my blood sugars to come into normal range (170). The ketones stayed high. I couldn’t keep food down, the pedialyte stayed down though, freakin nasty. No food stayed down until Saturday evening.
Saturday morning I called the oncall doctor who said I needed to go to the ER. *beeeeeeeeeeeeeeep* wrong answer. So I contacted a friend who’s a CDE and also has diabetes. She said that even though I had no symptoms of being sick that there was still something wrong in my body and had me up my basal rate to 120% to get me extra insulin to get the ketones out of my system and she also advised that a trip to the ER would be a good thing, but said I could wait till the afternoon and go if I still had moderate to large ketones.
Ketones went from moderate to large to small to moderate. I never did go to the ER and it took 15 days for the keytones to completely clear out of my system. I did have mild dehydration over those 15 days, but I also have a policy for going to the ER, I have to be dying, because, I don’t have time to go to the ER and then get shoved in ICU for a week or longer, as has been my experience when I go in there with ketones and high blood sugars and dehydration and vomiting up acid from the pit of my stomach.
I did have a thought after I got rid of the ketones. I was in ketosis, and my experience has been, when in ketosis for long periods of time, weight loss happens. And then, because I have a crazy brain, I thought to myself…I wonder if I lost weight…but then I never got on a scale to confirm it…
She Had Balls To Ask Me What She Did…
I didn’t realize just how disturbed I was by something my sister asked me a couple years ago. I remember being offended back then and I let her know just how offended I was…but for some reason, something that has been buried for a while popped back into the forefront of my head yesterday.
I was driving along thinking about things I wanted to do when I grow up. Things like have children, work with children…I love children. I have a huge heart for children. Children of most any age too.
So, I’m driving along thinking about all this stuff and BAM! into my head pops my sister asking me if I’d carry her child for her, like a surrogate. Maternity surrogate or pregnancy surrogate whatever it is, I’m not sure. I was sooooo pissed off when she asked. I understand that she’s been unable to carry a child, and I’ve lost a child of my own (could’ve had everything to do with not paying any attention to the diabetes and drinking heavily), but to ask me that…
I can remember when I was little, my mom asking that I never have kids because of the “dangers” to me (something about her watching Steel Magnolias) and the danger of passing the disease along to my children. She would always say “you can always adopt”. I used to be like “eh, whatever” because I didn’t want kids. I could care less about having kids. Now, I want kids, and yes, I could adopt, but I want to have some of my own children. There’s something about carrying a child and bonding with it after it’s born that you don’t necessarily get when you adopt a child.
I have an understanding of the risks, and most of those risks come from getting pregnant while the diabetes is a complete wreck. And I understand that while there’s a particular range that doctor’s want our a1C to be in before getting pregnant. But people, diabetic people, have healthy babies all the time. (And here’s something I know, their a1C may not always be in that very special “safe” range, but healthy babies still occur.)
So, back to my sister, I can remember being so irritated and rambling off something about how if I was going to take immaculate care of myself (a complete oxymoron when it comes to diabetes because no amount of “immaculate ” care makes diabetes behave), that it sure as hell wasn’t going to be so I could have somebody elses child.
So, I’ve lost whatever thought I had as to why I was writing this. So, I’m stopping here, now…
Mountains and Foothills
I’m coming into my own little world of meanings when it comes to my diabetes. Most of them revolve around the graphs on my sensor, and some of them are terms that many diabetics use. But recently, meanings that are unique to me and meanings that the peeps around me understand have come into existence. And since I haven’t seen them floating around the D-Blogs, I’m claiming them as mine 
The most recent metaphor for my blood sugars spawns from mountain biking. Mountains and foothills. There is nothing cooler to me than riding on a trail through the mountains and jumping crevices and bouncing over rocks. I love flying down a mountain side and catching air…going back up is not so much fun, lol. I also enjoy the flat foothills, speeding along, jumping rocks, avoiding snake holes, trees, laughing raccoons and whatever else may be out there.
Mountain biking, and traversing the mountains and the foothills has become the theme of the sensor graphs. Mostly, the sensor graphs show me in the mountains, riding high and dropping low.
But if I’m lucky, which sometimes, rarely I am. I’ll be happily coasting along in the foothills.
And now, it’s cool, because when my friends are talking to me and they know a day has been rough diabetes wise, they’ll ask, are you in the mountains. Or in the case of the past week where I’ve been plagued with god only knows what and have been sicker than a dog they asked “are you still in the mountains” and I was proud to say “nope, I spent some time in the foothills”…
it’s the little things that make this disease slightly entertaining.
What defines controlled?
This all stems from my doctor’s appointment that I had yesterday, which, I have a lot to talk about that came from that appointment, but the one thing that’s got me most irked right now is a certain ICD-9 code. If you’re unfamiliar with the term “ICD-9 Code” let me quickly familiarize you with it. ICD = International Classification of Diseases. (I don’t know where the 9 comes from) It’s the insurance code that describes a medical condition or diagnosis. The most common place I’ve seen it “placed” is on the blood work forms. And then, because I work in the medical billing industry it’s of course on the medical billing forms (HCFA, UB92).
So, the code that’s got me irked is 250.03. Any diabetic is probably familiar with the 250 ICD9 code range because it’s the range that says “diabetes”. It’s everything after the decimal that defines what kind of diabetes we have. Type 1, type 2, with complications, without complications, controlled, uncontrolled, and a plethora of all other kinds of descriptions.
250.03 means uncontrolled type 1 diabetes without complications.
Every time I walk out of the doctor’s office to get blood drawn, I take note of the ICD-9 codes. Every time I get to work, I look them up. Every time I see the same thing. And every following appointment I forget to ask what constitutes “controlled” diabetes.
It can’t be solely based on the A1c because low A1c’s can be indicative of swings between highs and lows or normals and lows. If there’s swings it’s “uncontrolled” i know that because I’ve been in that boat.
If it is solely based on the A1c, what’s the magic number we have to reach without having the severe lows?
Is it controlled if there’s no highs or lows?
What is it that defines “controlled”? What is the magic equation that will earn me the 250.01 ICD-9? The code that says, you’re a type 1 diabetic, and it’s controlled, and you have no complications…
if you’re curious about the different “diabetic” ICD-9 codes, you can view them here at icd9data.com
Return of the Symptoms
Currently, in a galaxy not so far away…
*cue music* doo doo doot doot dooo doo
It is a time where some humans exist with non working pancreas’.
One such human, after many years of neglecting her blood sugars
lost all indications of low blood sugars.
After many years of struggling because of no symptoms,
she has entered a time where the symptoms are returning.
A few months ago there were signs that they were returning,
but they were few and far between.
Now they are coming almost regularly. Not always soon enough,
but at least they are coming.
The occasional black and white fireworks in front of her eyes.
The instantaneous exhaustion.
The cold sweats and shivers.
The inability to form a thought.
The shaking of the hands.
The shivering.
Yes, the symptoms are returning.
When I heard the word “cure”
I’ve been sitting on a thought for a few days now. It’s difficult to not sit on a thought when someone says “cure” and meaningful human results within a year.
Actually, I had several thoughts.
The first thing that came to my mind is, these are cancer drugs, and I have thought for a long long long time that if I ever got cancer I wouldn’t do anything about it because the drugs they put me on would kill me long before the cancer did. That’s my thought on cancer and it’s “cures”. But now, there’s the thought of cancer drugs that would kill me before cancer would, curing diabetes.
Ever since I got diabetes, I’ve hoped for a cure. I’ve believed that there will be a cure in my lifetime. It is the hope for a cure for diabetes that drives me. It is the hope for a cure for diabetes that gives me reason to live. It is the thought that one day I won’t have this disease anymore that keeps me going.
By the same token, I have to be cautious of the word cure. The word cure makes me happy and giddy but thus far I don’t have a cure, I just have hopes of a cure. I hear things, things like “possible cure” and then it dies…and it’s a while before I think about it, and when I do think about I discover that it didn’t make it to human trials or it died in human trials. That word cure, it’s a dangerous word.
But then I thought of something bigger.
Say this possible cure, is a cure, the cure. Say, that regardless of the massive risks one of these drugs has, I get cured. That’s good, I’m cured. I’ll be happier than one can imagine, I’ll be rejoicing. But what about all the peeps in 3rd world countries with Type 1 diabetes. Will they have access to the cure? They don’t even have access to the normal stuff we diabetics need to survive, like insulin, will a cure just become another novelty item they can’t afford?
And then I started wondering about why they started testing cancer drugs in mice as a cure for diabetes. But I haven’t done anything with that thought. Although, it does seem strange to me that cancer drugs that block receptors of a tyrosine kinase which is not known to be involved in diabetes can possibly cure diabetes. It doesn’t make any sense. It doesn’t compute. It’s like someone just woke up one morning and said, “hey! let’s try this.”
This is something that I’ll be researching, because I’m very curious now. Most cures I just kind of wave off and say when it happens it happens, but this time, I want to know why. I want to know what led them down this path. I want to know what made them think to try a cancer drug on a diabetic mouse.
My thoughts on the 2nd World Diabetes Day
Last year, my idea of telling peeps about World Diabetes Day was to say that diabetes doesn’t just effect us one day a year, but every day of the year. I’m looking at that meager post about the inaugural World Diabetes Day wondering what the heck I was thinking. To be honest, I have no clue.
Up until a few days ago, my world of diabetes didn’t extend far beyond me, and when it did extend beyond me, it didn’t extend beyond the boundaries of the US. My world of diabetes was basically me, and the crap we deal with when it comes to insurance companies and trying to get pumps and continuous glucose monitoring systems.
Somehow, what I didn’t realize, was that there was a world of people with diabetes outside of my “world” that are lucky if they even have access to insulin, they’re lucky if they can check their blood, they’re lucky if they can get to the doctor.
Here are some of the staggering statistics that hit me the hardest that I’ve recently become aware of. On this World Diabetes Day, to me, it truly is about the world.
- Diabetes is increasing faster in the world’s developing economies than in developed countries. Seven out of ten countries with the highest number of people living with diabetes are in the developing world. With an estimated 35 million people with diabetes, India has the world’s largest diabetes population.
- In developing countries, less than half of people with diabetes are diagnosed.
- A person requiring insulin for survival in Zambia will live an average of 11 years; a person in Mali can expect to live for 30 months; in Mozambique a person requiring insulin will be dead within 12 months
I’d like to share a few sites that I’ve become aware of that tell a lot more than I can put here about diabetes in different countries:
World Diabetes Foundation
International Diabetes Federation (who has an awesome documentary entitled “Life for a child” that will help open eyes to what’s going on in 3rd world countries)
World Health Organization
I felt the low, and I didn’t like it
It’s been a long time since I’ve felt a blood sugar that was low but not as low as the 30’s and low 40’s. I have hypoglycemia unawareness. I don’t feel my low blood sugars generally. And typically, if I feel my low blood sugars, it’s not so much a feeling so much as it is me seeing something. And by seeing them, I mean that I actually watch my vision tunnel. That’s the one lone symptom that I notice.
Other people can pick up on my lows based on my response times to questions or my suddenly argumentative demeanor and lack of understanding when just moments before I had been fine. Or sometimes I’ll just ramble on and on about nothing at all and I’ll quickly be jumping from one thought to another. Well, okay, that’s not always a symptom, it’s fairly normal; but special peeps with special skillz can pick up on when my persistent rambling is the result of a low blood sugar.
All this to say that unless my blood sugar is <45 or someone else catches it, the only thing catching my lows is my every 2 hour blood checks or my continuous glucose monitor (CGM). None of which are ideal situations. However, because of my severely erratic blood sugars and the overwhelming number of lows I experience (I’d venture to say that I have at least 1 a day) I’ve lost the symptoms to my lows a long time ago. Oh, I just thought of another one. About the time my vision is tunneling, my lips and tongue start to tingle in an atrociously irritating way.
So now, I take you to the last day of Diabetes Training Camp when we were sitting in a circle sharing our highlights of the week. Before we sat down we had locked arms and KR noticed my very sweaty hands and asked if I was low. At that point my blood sugar was 98. A perfectly normal blood sugar. So as we’re sitting there and as time is passing and stories are being told, my blood sugar is dropping. But, because the alarms on my CGM are turned off, I was unaware of what my blood sugars were doing. That was, until my head became very very light and my eyelids became very very heavy.
I sat there on the floor for a bit feeling these feelings. At one point, I had a thought that if I didn’t get up, I wasn’t going to be able to get up at all. My entire body was becoming as though it were a lead weight. I waiting until the person speaking was through and worked hard to get up (I really wanted to crawl).
I went to my backpack and sat down only to realize that my meter was at the table. I grabbed my bottle of glucose tabs and again fought to get up to get to my meter. This time, I sat in a chair. I didn’t last long there.
I desperately tried to get my fingers dried because the first finger prick didn’t lend to the beading of blood, it just flattened out and ran over my finger (this is only normal when I’ve exited the pool). When I finally got my blood checked, I was 60. WTF!?! What I was feeling for that blood sugar was so far from normal that I didn’t know what to think. I grabbed the glucose tabs and poured half of them into my sweaty hands. As I began eating them, I knew I was going to fall out of the chair so I slumped to the ground, laid down and continued to shove glucose tabs into my mouth.
I was lying there, on the floor, my legs bent at my knees and they began to shake. I clench the muscles to try to hold them still but it wasn’t happening. I think if I had to compare it to something, I’d say that it was like trying to support a structure such that it wouldn’t move or even wiggle the slightest bit in an earthquake. Being that way, I straightened out my legs and let them continue to shake and laid there with my hands on my belly, my shirt soaking up my sweat My mind was void of my own thoughts and I was listening to all the peeps talk of their highlights of the week.
At that point, I had probably eaten between 12-15 glucose tabs. It was seriously half the bottle. That’s a lot in case you’re wondering. The next thing to happen was me getting nauseous. I don’t do well with being nauseated when I’m not low. Being low compounded my issue with nausea. There was no way I was going to be able to get up from the floor if I had to vomit. At that moment in time, I was not in a good place at all.
I continued to lie there and mentally tried to will the nausea away. And then, I started to shiver. But it wasn’t a shiver because I was cold shiver. No, this shiver, I don’t know what it was, but it was fierce enough to make my teeth chatter.
That was my low, I was all of 60 and I didn’t like feeling it, not one bit. I really don’t want to ever feel anything like that ever again.
Do A Little Dance
I got a call today from Edgepark. Edgepark is the company that was hired by CIGNA to handle medical devices for diabetes care (or something like that).
So, I get today’s call. It was the third call that I was waiting for in my quest to acquire a CGMS (that’s fully paid for by insurance).
I was very excited to be told that I was approved for a CGMS, it and it’s monthly supplies were fully covered, and that he’d put it in the mail today and I’d receive it early next week.
I was denied the CGMS last year, and the process to get my pump actually took longer (over a month) to get than the mere 4 days it took to get me approved for the CGMS this year.
I’m very excited, and yes, I did do a little dance.