ADA Tour de Cure vs JDRF Ride To Cure
I’ve had diabetes for 17 years. Friday, I went to the local JDRF office for the first time ever. I went there to sign posters for the 5 riders that were being sent from New Mexico to Sonoma, CA for the Ride To Cure Diabetes. While there, I had a good conversation with some of the JDRF folk. We had a conversation that I had often thought about but never expressed (or maybe only slightly expressed it).
I went to college with one of the JDRF peeps and she knew I was into cycling and she said that I should do a Ride To Cure. And so, the conversation begins.
I’d want to do a Ride to Cure, but when I look at the impact it will have and how much money needs to be raised for a single ride, I don’t see it going as far as me being able to go to several different places and to be able to ride more miles and see and talk to more people and for the same amount of minimal fundraising required for the Ride to Cure.
And I broke it down for them.
With the Ride to Cure, there are two routes to go:
1) raise money for the “event package” which depending on the ride is either $3000 or $3200 and includes
• Ride training by a local coach or our National Head Coach certified by USA Cycling
• Fundraising strategies, support and tips from JDRF
• First night welcome reception
• Three nights stay at host hotel for the event
• Breakfast and Dinner (Lunch on your own during excursions and travel)
• Pre- and Post-ride celebrations on site
• Ride to Cure Diabetes jersey by Hincapie Sportswear
• Finisher medal
• Reward of having made a contribution to finding a cure for diabetes!
or
2) raise money for the “complete travel package” which, depending on the ride this is anywhere between $4200 or $4700, it includes everything in the event package as well as:
• Round-trip airfare to the ride city booked by JDRF
• Bike shipped to and from the ride city
• Transfers to and from the airport on Thursday and Sunday
And then I started in on my opinions. I’m not raising money to travel to go and do something for a cure, I’m raising money for a cure, traveling is all on me, I don’t have to travel to help find a cure, it’s a bonus. With that said, people shouldn’t have to donate to me traveling. Their donations are in the name of a cure. I’d go with the “event package” just for that reason and I’d stop donations just below the amount for the “complete travel package” because I think it’s wrong that someone else pay for my trip in the name of finding a cure.
Riding in the Tour de Cures, I’ve figured out how to minimize my traveling costs (it only took me a year of driving, flying, and hotel stays to figure this out)…I have friends/family all around the country. The majority of them are more than pleased to see me even if it’s in the name of a bike ride and they’ll let me stay at their homes. If I book my plane tickets in advance, they’re below $200, even to big cities across the country from me. If I’m smart, I book my flight on Southwest, because they’re the cheapest airline to put a bike on at $100 round trip. If I don’t have a choice but to fly another airline I’m looking at $200 round trip for my bike. I’m all about having a car where ever I’m going, my very own car, and really, it’s not a car, it’s an SUV and it’s because I’m slightly a snob and because I don’t like sitting on the ground in little cars. I rent a car where ever I go, no questions asked. End of story. It’s a cost I prepare for. There’s no need to raise an extra $1500 to cover these costs.
And then I broke down the bare minimum cost, $3200. In most cases, the minimum fundraising amount for a Tour de Cure is $150. Some of the rides are a little more because we cover greater distances, it’s a more popular ride, it’s a multi-day ride, etc. I like to strive for a minimum of $500 a ride, sometimes I do my due diligence and make it, sometimes I just raise the bare minimum. But lets say I do $500 a ride. With $3200, I could do 6 Tour de Cures in a year. Which means, I could ride up over 600 miles as opposed to the 109ish which is the max mileage in any of the Ride to Cures.
Riding is important to me, 2 years ago, cycling saved my life. It gave me a reason to live, something to strive for, it keeps me healthy, it keeps me intact. Training for a single century-ish length ride a year, it isn’t enough. And I know that it’s for more than the sake of riding, that it’s for a cure, but if I’m going to raise that much money, I want it to mean more than a hundred miles and a check written to stem cell research.
I get that meaning in the Tour de Cures. Having ridden in 9 Tour de Cures, 8 of them in different states, I’ve learned several things. One being, people riding in the Tour de Cure, aren’t necessarily riding in it because they know someone with diabetes, many athletes use them as training rides because they’re mostly well supported. So I’ll be out there riding, and having a conversation with someone about diabetes because of the jersey I’m wearing and it’ll be great because I’m educating them. And I love that. Whereas, you can bet if someone’s riding in the Ride To Cure, they know someone with diabetes or they have diabetes. It changes everything when I’m out there riding and people don’t even know what they paid for because all they wanted was a training ride.
Ok, back to where my money goes, because they made a good point, and this point used to bother me. The ADA has a lot more overhead than the JDRF and much of our money raised goes to other things besides finding a cure. But some of that stuff is important, camps for kids, educating people (I’m not so much a fan of the pamphlets sitting in the doctor’s offices though.), I didn’t use to think that that other stuff was as important as a cure and I scoffed at it. But education is important, and I think more importantly than the education being funded through the dollars I raise, is the education that is being displayed with all the diabetic athletes out there because it shows younger kids with diabetes that it’s not the end of their lives (so different from what was portrayed 20 years ago, at least to me, I digress). The JDRF is ranked high among non-profit organizations for keeping their overhead low and for “putting almost every dollar spent to work curing disease….” my main concern with this is the research their funding. They fund mostly embryonic stem cell research and that’s not something I support. I don’t believe that our cure lies in embryonic stem cell research and I don’t support it on moral grounds. That’s not to say that the ADA isn’t supporting it with the funds I raise, but they’re also designating the funds to other things as well. And the other things are important. (I will say this though, I did find out that I can check a box that says “don’t donate this money to stem cell research”).
It was a good conversation, and both sides were well taken, and one day, I will do a Ride to Cure, but probably not in the near future. And not in the near future simply because I have a goal I’m working on, I want to ride in every Tour de Cure, and at last count, there was 84 of them, and in order to do that and raise the funds for them, I need to not put all my raised funds into a single ride.
A Most Beautiful Ride - The North Carolina Tour de Cure
It’s been a crazy long time since I’ve blogged (other than my thursday thirteen posts which don’t count). I’ve started a few posts, but never finished them, and then, I didn’t have internet for half of May, and when I got it back, I didn’t feel like blogging. And in June, well, I’ve been traveling and lazy when it comes to turning on my computer at night after I get home…That brings us to now, where it’s been 2 weeks and a day since I got off my bike at the horse farm and called Lolo and said “I’m done, will you please come get me?” That was at the 53 mile mark of a two day ride for the North Carolina Tour de Cure. The first day I rode 83 miles.
It was an amazing and incredibly well supported ride. It has moved into the place of “favorite” knocking Tour de Cure Colorado into second place (which, might I say, is difficult to do because the CO Tour de Cure was the first Tour de Cure that captured my heart with how well it was put together and it’s route). There is so much to write about that I’m going to have to split it down into several blog posts, I’m thinking, Day 1, Day 2, and my overall thoughts about the tour, and then of course the various details of how i handled the diabetes and how it treated me.
So, here we go, Day 1.
It was an absolutely beautiful day. Overcast. Or cloudy. Depends on how you want to look at it, the skies were grey and it looked like it would rain on us. But it was beautiful. And the temperature, well, for my New Mexican self, it was warm and wet (humid). But it was beautiful.
I’d have to say it was the most desirable weather conditions for riding. Not too hot, not cold, the sun wasn’t beating down on us and it wasn’t raining either. To me, that might be my definition of perfect riding weather.
So, here we are, Laura and I.
I gotta tell you about Laura, because she, she’s one of my heroes and she’s a great friend and for as much as I hate diabetes, if there’s one thing I’m grateful that it’s given me, it’s Laura. And I wouldn’t trade her for anything, not even a cure. She’s a bit of a celebrity in my book, a famous person. She’s a member of the Team Type 1 Triathlon Team
and an amazing athlete. She can out swim, bike, run me any day. She’s a little speedy gonzales. Even on the rolling hills of her home turf in NC (rolling hills I wasn’t prepared for). If you ever get a chance to meet Laura she’s awesome to talk to and she has awesome stories.
I wasn’t with Laura long, LOL! I was with her until the first hill I think, and then I fell back. Hills are not my strong point. But it was awesome even with the hills. I come from the desert so to be riding along and be surrounded by big green beautiful trees was absolutely awesome. Just about every 5 minutes or so I was like “It’s so greeeeeeeeeeeeeen and beautiful.” I absolutely love it! Like, seriously, the entire ride, except for one part near a quarry, was like this:
The route was absolutely beautiful, the most beautiful route that I’ve ever ridden. 83 miles of that. Well, that or horse country, that’s what I call it, where there’s these big fields with big houses every mile or so and trees out on the property. BEAUTIFUL!
So, the weather was absolutely beautiful and the scenery was beautiful and I was riding along happily admiring the trees and talking to people. I met Andre. He’s been riding for as long as I’ve been alive and he was awesome to talk to and ride with. It was enjoyable.
As we were riding we joined Kayce and Tom.
And all together we rode many hills. I think the most exciting part of my ride was a snake. A beautiful black rat snake. He was alive. He was crossing the road. Andre and I saw him first, Andre rode around him, I yelled SNAAAAAAAAAAAAAAAAKE and slammed on my breaks a foot from his head. Stood there and stared at him, got smart and moved out of the way, and then was all, I gotta take a picture!
So, here’s my snake:
He was about 8 ft long and 3 inches in diameter at his fatest point. He was beautiful.
Tom and Kayce and Liz thought he was dead, they didn’t even realize that he had been slithering and they just went around him.
Kayce and I were riding along and a squirrel jumped, JUMPED! out of the little bushes on the side of the street, like a foot in the air, and ran across the street in front of us.
And later there was a vulture having a rabbit for a snack. He wasn’t happy when I approached, he took off and was circling, and he was big too, probably 2-3 feet from feet to head when he was standing on the ground.
It was an awesome ride. It was just great. It was beautiful, it was well supported, the people were friendly, there was only one part where I got skeered because it had been a while since I had seen a marker on the road and when I looked at the street sign the name of the road didn’t match the road I was supposed to be on. That’s always my biggest fear when I’m riding in other states, but luckily I kept going and another sign popped up.
I had favorites throughout the ride, and as I was thinking about them they boiled down to a favorite for almost everyone of the 5 senses.
Favorite sight: green green green everything all around.
Favorite sound: wind rustling through the wheat fields.
Favorite smell: strawberries as i passed the strawberry field.
Favorite taste: peanut butter and jelly.
It was a most wonderful day. I was out there for 8 hours, I was riding for 6 of those hours. My blood sugars did mostly well, my riding was good. I averaged about 14mph (even with all the hills, that excites me!) It was 83 miles and my top speed was 35 mph. I totally love going fast down hills. I’m not exactly a fan of hills because I’m not a good hill climber, but hills are rewarding and I saw that the most during this ride because when I got to the top I immediately got to go down them. It’s always fun for me to see just how fast I can go down hills. I had a blast.
Thirteen Things I Need To Blog About
I’m so far behind on blogging it’s not even funny. I might be even further behind on posting my Diabetes365 photos…that’s even less funny. So here we go, the stuff in my head or half started blog posts that I need to finish and get up.
1) North Carolina Tour de Cure Day 1
2) North Carolina Tour de Cure Day 2
3) Beach Conversation
4) Releasing The Anger surrounding my diabetes
5) Returning to shots
6) Endo Appt that results in an A1c of 7.1
7) Being diabetic vs having diabetes
Phantom Pancreas
9) Being In Control Vs Being Controlled
10) It’s like a jail cell
11) June goals (I know it’s midway through June and I didn’t post May’s either, but I gotta do it)
12) Preparing for Tour de Cure Colorado’s 100 mile ride
13) Thoughts on MTM’s book.
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Traveling on Thursday (Thirteen)
So, I was traveling on thursday and I discovered a couple things. Well, more like several things.
1) If I take my bike with me to the airport, I get to go through the fast check-in lane because, and i quote “it’s easier if you go that way with your bike”…therefore, i got to go through no line as opposed to the 30 people long line…
2) Southwest is the cheapest airline for putting my bike on the plane at $50 compared to everyone elses $100 charge.
3) Southwest doesn’t have seating arrangements, which goes to show just how long it’s been since I’ve been on a Southwest plane.
4) Since Southwest doesn’t have seating arrangements, the best place to sit is next to old people because they take the middle seat and the aisle seat and are more than happy to let you have the window seat (yes, i still get excited about having the window seat)
5) Landing an airplane, it’s the same landing pattern as when we land when skydiving.
6) The Midway airport, it sucks…
7) The Raleigh airport, it’s all kinds of small.
renting a car from Alamo, specifically, an SUV, they’re the cheepest and their insurance is the cheepest.
9) my bike, in it’s case, with various gear inside (i.e. helmet, shoes, tools, waterbottles) weighs 59 (or 69, i can’t remember) pounds.
10) i like going to new places, and it made me think that I need a job where I get to travel. Cause I love flying and going to new places.
11) there’s one thing I don’t like about new places, and it’s how some places (ahem: Raleigh, Durham, it’s all I’ve seen on NC) don’t have signs between the stop lights, they’re on the corners, and you can’t always see them, so you don’t know where you’re going or where you’re supposed to turn.
12) Garmin Nuvi has become my best friend. I’m all about having one when I go to new places.
13) When I travel, once I’ve established a general route that I go to and from, it’s THE route, any other route, and I get confused. Even when the directions say to go another way, I’ll find a way to go MY way.
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Thirteen Thoughts - Thursday Thirteen V7
My brain, it doesn’t ever shut down…it’s running like crazy, I’ve got so much in it that I don’t know where to start…I’ve got stuff in it stored up from weeks ago…so I figure I should jot some of this stuff down, I’m gonna need some input too for some of it…
1) I have a site redesign in mind that I’ve not been able to work on because of the lack on interwebs at home…it’s so sad having to do something other than be on the computer at night when that’s all i want to do…
2) I’m working on my web presence, you just can’t feel it yet…and my personal brand, the personal brand, it’s pretty cool if you ask me
3) I’m thinking about doing some sponsored posts on this blog
4) On Saturday, I’m riding my bike 100 miles, and I’ve not ridden my bike in a couple weeks, and further more, I’ve not ridden my bike while taken shots in a couple years…it’s gonna be interesting.
5) I’ve been on shots for two weeks and I’ve not really told anyone that, but it’s going to make for an interesting blog post concerning the definition of “free”, or my definition of free in terms of diabetes.
6) I had some really cool thing happen to me with something I did blog about, but, I can’t tell you yet, but it will be a blog post.
7) I think on May 31, I’m going to ride in the NM Tour de Cure, it’s 75 miles. And then for sure, on June 6-7 I’m riding in the Raleigh, NC Tour de Cure, 75 miles each day.
I need to get new Moo Cards pronto
9) I’m going to Orlando in October for IzeaFest and I’m mucho excited
10) I’m also doing the Expedition Everest Challenge while I’m in Orlando for IzeaFest
11) I really want to run another marathon
12) I’m deeply contemplating running the Disneyland Half Marathon over labor day weekend
13) I’m very behind on posting my update on April’s goals…could be because it’s going to be a sad update…but I’m not sure, I’ve not revisited them since I wrote them, but it also means I’m behind on posting May’s goals…I have some work to do.
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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…
Content with CDE Appointment
Almost a month ago (April 8th) I went and saw my CDE. It was very different from what happened the last time I went and saw her.
The last time she saw me I was at the tail end of a destroying my life via poor/non-existant care of my diabetes phase. My A1c had risen over 7. And there was a bit of a drinking issue. And really, the last time I didn’t desire to fix anything. Not the broken A1c that I was angry about. Not my poor eating habits. Not my lack of desire to train. I was in a bit of a slump, but when it comes to my diabetes I think it’s safe to say that I spend a decent amount of time there.
And then I got the results of my blood work back. The blood work that was done because I told the truth on the questionnaire, the one that asks “how many drinks do you have a week”. The blood work had a highlighted comment on it “cease drinking and seek counseling”. Now I hate counseling. I hate counselors. And I’ve resisted counseling for a long long time. The CDE and Endo have often said “Courtney, we really wish you’d see a counselor that’s familiar with diabetes.” and everytime, I smile and say “no thanks”. This time around through, it was a little more important. My little liver was endangered. I was on my way to having sclerosis of the liver in 20 or so years. And so I went and saw a counselor.
The very first time I saw the counselor was the day my drinking virtually stopped. Any drinking since that day has consisted of exactly 1 shot of vodka and there have only been two instances of those. With alcohol out of my system there has been some improvements with my diabetes. It’s easier to track what’s going. It’s easier to tell what’s causing the upsets in my numbers. And it shows.
My A1c dropped from 7.1 to 6.7 in a matter of 2 months. I was picking up trends in my numbers and making adjustments where appropriate with my basal rates. I was noticing what foods were wreaking havoc at my 2 hour post meal checks (which pains me because these are foods that are normal staples in my life). These are all things that I wasn’t noticing before. Well, half of them I couldn’t see because there was so much alcohol in my system that it was jacking everything up.
So, that was 3 weeks ago. And it was very good. In the past 3 weeks, there have been some massive developments, but those will have to wait for another post. But as I said last night, I have a lot to write about.
for future reference
i have a lot to write about…
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…