I think we shouldnt be dividing ourselves any longer. Multiple sticks together are stronger than individual sticks. I really think that such groups of people should join other groups so they could all benefit and share with each other. We are so back behind that we are still looking for a cure rather than an alternative/improved cure. We cant all go different ways.
I am here to tell you that being able to control you glucose is what it is all about!
I do NOT share this to make you hate me. . . though I think that my T1 BFF does (hate me) from time to time and I wish with all my heart I could give her half of the Beta Cells I have left that are working. I would do it in a heartbeat. Honest!
A year ago tomorrow I got my diabetes diagnosis.
Actually, I was happy. Relieved. Grateful.
That's because something was so clearly wrong and my PCP wasn't taking me seriously!
You see, I have fairly rare form diabetes passed along through a defective gene that causes insulin deficiency.
Apparently, in our family, it occurs with little (and, now, in my case - no -) insulin resistance.
But since I was age 58 last year my PCP assumed I was a Type 2 and by default insulin resistant; that I should go off and just diet and exercise for a while and that she should just leave things alone.
I got a meter and though (in her defense) my Fasting Blood Sugar had only risen to 105 (yes, you may laugh) on my routine physical exam, I took this very seriously, because:
My father was an insulin dependent diabetic (diagnosed at age 54)
And his sister was, too. She did not take care of herself. I remember being told she got gangrene in her foot and her leg was amputated. This made a HUGE impression on me in my early 20's.
And his sister was, too. She did not take care of herself. I remember being told she got gangrene in her foot and her leg was amputated. This made a HUGE impression on me in my early 20's.
The meter told me that the nice normal A1c I had of 5.4 (follow up to the slightly high Fasting BG) was an average of nice low "gullies" between meals and really high reactions to carbs. Post-prandial numbers regularly topped 225 at 100-120 minutes after the first bite - and needless to say that freaked me out.
Though - not my PCP who just looked at my numbers and swore I was fine.
I read and read and insisted that I could not be a Type 2. Could it be LADA? I told her about my father and my Aunt. I forwarded copies of articles to her and reported meals and BG readings with the # of carbs.
She said "Wow, that's a lot of data. I think you should see the Endocrinologist."
Who on 12-17-10 looked at my meter and pronounced me diabetic. 8 months later - after digging into genealogy, I convinced her to refer me for MODY testing. I was positive.
But back to YOUR point about the VIDEO, Emily, I am SO LUCKY:
My diabetes is very well controlled because:
- I still make some basal insulin and I have a minor first phase response, but it is very limited. I was able to handle about 5-7 carbs per meal (depending on whether the Diabetes Fairy was looking upon me favorably that meal).
- I have NO insulin resistance, so what insulin my body gets (naturally or exogenously) it USES.
So, I just don't have the wild swings that my BFF suffers from.
It is MUCH less of a guessing game of trying to figure out HOW many carbs are in that FOOD. And if you guess wrong, then you can go So HIGH or SO LOW.
So, I'm all for CONTROL for all diabetics.
While I'm on the subject, I wish finger tip blood glucose meters were more accurate.
I can tell the inaccuracies because my body is unusually sensitive to increases in blood glucose. I KNOW my sugar is RISING WAY before the meter can detect it.
Just this afternoon, for example, after lunch, my meter read that I was in the mid 60's after lunch. From experience, I could tell I needed insulin (though I had only had some lamb vegetable soup and some bread and butter, with ample butter). Yes it was French bread and about 45-50 carbs when all was said and done, but I thought the pure butter at the French restaurant would slow things down. Apparently not. I felt myself spiking as I got in the car. For me, the signs are a raging headache and tingling in my fingertips.
But my meter said 64. I tried it again. 65. I had a unit of Humilin ready to go, but with a reading of 64 who is going to inject?
So the big question for me is: Do I - in my 2500 pound automobile in which I can kill other people if I have a bad hypoglycemic episode - trust MY BODY - or THE MACHINE?
Who would a COURT TRUST if I KILLED SOMEONE?
THE MACHINE!
I waited. 2 minutes and the next reading on meter was ALREADY at 90. 64 to 90 in 2 minutes? Okay, I think I'm spiking. I reduced the insulin from 1 unit to 3/4 of a unit (between the 1 and 1/2 unit marking on m syringe) and injected. I drove home.
After I'd driven home, gotten there and my packages in the house, I felt fine, the insulin was clearly working and I was at a very happy 99.
So - when I started this "kvetch" I was blaming the meter. But maybe it isn't the meter. Maybe the meter is reading my FINGERTIP just fine. The issue is just that I can feel what's happening in the core of my body and my liver/pancreas sooner than it gets to my FINGER.
I have NO idea what to do about that issue.
Oh well, if that is the problem than the meter companies are absolved and NEVER MIND.
Bottom line though - I do not have an issue with having diabetes because it seems so manageable to keep my glucose in range compared to my BFF! Again, I just wish I could give her some beta cells and help her out.
April
I SO agree! Afraid I didn't read all the responses before I posted. I completely agree with the meter accuracy point.
I am so fortunate that my body is more in-tune and more accurate in some ways than the meter. My father was the same way. I did not believe him when at 70 yrs of age he said "I know when I'm high." But NOW I AM HE" and I know what he was talking about.
I'm so sensitive that I can feel a 30 point pop in my BG. And if it rises higher than about 130 (I am a MODY 3 diabetic, very insulin sensitive, not insulin resistant, insulin deficient) then I get an awful headache and nauseated.
But my meter does not reflect these changes as rapidly as I can feel them.
Is the issue that the blood doesn't get to my finger tips that fast?
Is it meter tolerances?
What IS the issue?
My BFF is T1 and she does not FEEL the differences - so she chooses to "blindly" follow her meter. What else can she do? She can't feel the difference so the meter HAS to be right.
So she ends up with WILD swings in her sugars.
That, I think is because when her METER says she is at 69, she may ACTUALLY be at 130 and rising.
I may FEEL that. But she does NOT. So, she gives herself a couple of units and ends up swinging HIGH.
Once you are on the swing, how do you end it?????
And when you are dealing with several units that YOU DID NOT NEED IN THE FIRST PLACE, the swings have to be HUGE (either direction)!!!!!!!!!!!!!!!!!!
April
I am not here to generate a fight, not to be disrespectful to others. I am also not here to encourage or suggest to anyone specific donations to specific organizations or causes. Personally, I donate money to local causes, where I can see their results and they can be directly accountable to their respective communities for positive results.
I don't see a practical cure, a physical cure or mental cure any time soon. I think that Sanofi-Aventis, Novo-Nordisk and Ely Lilly are making too much money on the sale of insulin. Becton-Dickinson and others are making way too much money selling syringes. Animas, Medtronic, Insulet and others are making way too much money selling pumps, and Accessories manufactures are making way too much money making the parts and accessories for those pumps. There are a host of other companies making hardware, expendables and medications that are diabetes related. According to the Republicans, we dare not tread on the profits of the industry.
What bothers me most, and yes, this is personal, is how badly diabetes messes with the mind. My close friend, diabetic as she is, has more mental health issues than any five people should have to handle. She sees a psychiatrist and mental health therapist regularly to deal with her mental illness and diabetes management issues. As for me, there are three things I can do to help her. They are: encourage her at every chance to make the correct choices for her life and health, Pray daily for her well-being, and cry with her, laugh with her and hold her hand to say "Yes, I really understand this; ant to assure her that she isn't alone, although that is how she feels for the great amount of each day.
As far as finding an organization, I am not looking for one. As far as a practical cure, I am not seeing it happen. As far as hoping for coping with diabetes, I look for that every day. Is there a clue out there as to where I might find it?
Communism and fascism in the first two sentences! TaupeLime FTW!!
I don't believe that in the late stages of capitalism we can expect "teamwork" out of a project to cure diabetes. People seem inclined to consider science is an "investment" and feel like if we invest in a large organization (JDRF/ ADA*/ Tu[?]), we should know that the $8000 your team raised at the walk or your $20 subscription to Diabetes Forecast*, you should *know* that the money will lead directly to a cure. At the same time, labs are competing in the "marketplace" for scarce assets, likely scarcer in the current economic crisis. Government intervention is *not* currently marketable. The "Tax for a cure" candidates will get very little support outside of our community, despite the fact that curing diabetes would free up a *ENORMOUS* amount of money for other, perhaps more effective purposes like cluster munitions and Predator drones. I don't have any clear expectation of a cure when I donate, but I make myself feel better by participating. In some ways a $20 donation might be better spent on a case of beer but well, I have one of those too! It would cost $100 for me to go to the doctor to get happy pills so, if I can send someone $20 or donate money here and there, that makes me feel better for $20 instead.
*= centerfold in April 2011 Diabetes Forecast.
There is no "Tax for a cure" like there is no "Tax for a cancer cure." It is a public policy health decision by our government. A shifting of funding priorities. Why does our government spend $5.6B on cancer and only $1B on diabetes?
I was astounded a couple of years ago when I looked it up for one of these discussions to learn how much more expensive diabetes is than cancer. Not to imply cancer doesn't suck but in "public health" terms it would seem appropriate to prorate the investments based on costs.
I meant to point out that any suggestion of "everybody chip in" to do *anything* is will do to a politician's chances of being elected what my immune system did to my pancreas.
As a few others upthread mentioned, a simple goal of producing an accurate and precise home blood glucose meter would improve lives today, while we wait for a cure. I can't believe that we calculate insulin doses, a hormone that can kill, based on meters with such poor accuracy.
I use an Accu-Chek Aviva meter. It typifies the accuracy found in all hand-held home blood glucose meters. How many of you know what the accuracy specifications are on these meters? If my blood glucose meter displays a result < 70 mg/dl then the actual BG is within +/- 15 mg/dl, according to the manufacturer. That means if my BG meter displays 69 mg/dl then I can only conclude that my actual BG is somewhere between 54 mg/dl and 84 mg/dl!
The difference between a 54 and an 84 is huge when it comes to treatment responses. At 54 I'm usually adding fast acting glucose while I consider 84 a near perfect BG with no treatment needed.
Above 70 mg/dl, my meter is considered accurate if the displayed reading is +/- 20% of actual BG.
I consider this level of accuracy a joke! I realize that manufacturers must balance costs with benefits. Somehow I think that the people who make this decision must be insulated from real world people with diabetes. I also think that meter manufacturers don't really care about the T1 market; they designed and built machines much better suited to treat T2 diabetes.
And to make matters worse, I use my inaccurate meter to calibrate my CGM!
If I just had an accurate BG meter, say +/- 5%, then I might be alive when this practical cure arrives.
First of all, I can pretty much guarantee that manufacturers aren't attuned to the T1 market, because T1's are really only about 10% of the diabetic population.
I do not know how many additional percentage points would be added if one were to include the # of diabetics who using insulin to manage BG.
But any time insulin is used to manage BG, there is, of course, the chance of going low and meter accuracy becomes FAR more important.
However, I really, really that Manufacturers UNDERESTIMATE the difference on the UPSIDE as well. I think they are SCARED of the lows due to LIABILITY issues. But NOBODY makes a BIG deal over a 30 point spread to them on the HIGH END.
I am sorry, call me the Glucose Nazi, because that is what I am. But I really really care about a 30 point difference.
And, if it's +/- 15% on a BG reading of 148 by the way, it's VERY important to note that the "delta" or size of the change expands considerably vs. the example given by Terry: from 30 points (54 to 84) to a range or 126 - 170 or a difference of 48 points.
Essentially, the lower you go, the lower the tolerance for error - which protects us (mathematically) from hypoglycemic shock - although the difference of a point or two at once you are below 45 means little.
I would suggest that without knowing the frequency of errors, that a range of this size should really be quite unacceptable for Type 2 diabetics who are serious about measuring their blood glucose and controlling it.
Is it any wonder then, that once can be so vigilant about measuring BG at home and then go to the MD and find the A1C to be off by half or even a full point (0.5 to 1.0) vs. expectations?
Just sharing some more thoughts.
I think that the glucose manufacturers and even MD's are letting down diabetics.
Personally, I think that the technology is woefully out of date on meters for Type 1's and other insulin using diabetics.
I also think that the whole medical field takes Type 2 glucose way too lightly. As well as nutrition. They just send people off and say "try diet, try exercise, come back in a few months or six months - no biggie."
I'm sorry to be all gloom and doom, but they need to start with a much clearer picture of the consequences of the disease.
It is with gratitude that the first image in my mind when I heard "high glucose" was that of my Aunt having a leg amputation. That made a HUGE impression on me when I was young. All I could think of was NOT ME, I am taking this seriously - she didn't and she DIED thanks very much. I want to do what I can NOW.
It was my DOC who did not take it seriously!
That is why my A1C is now 5.2 (let me stress that I am a MODY3 diabetic, very insulin sensitive, exercise and also limit carbs. Hitting on all cylinders. T1 may have a much harder time achieving this number - please do not compare yourself to me, I am still making insulin. T2's please understand that a) I am not insulin resistant and 2) I take insulin.
Personally, I feel like I hit the diabetes jackpot, except that with MODY each child of mine (and my children and their children and so on and so on) each has a 50% chance of getting the defective gene. If they GET the gene, then their children have a 50% chance of getting it. . . and so on (forever). . .
April
April - Thanks for your thoughtful reply to my comment. Your response reminds me that I sometimes don't realize that many T2's also use insulin and have the same concerns regarding meter accuracy that I do. Anyone that uses insulin is vulnerable to disabling hypos and needs an accurate meter.
On a related note, I had blood drawn recently for an A1c and a glucose measurement. I did one fingerstick just before the blood was drawn and one fingerstick about five minutes after the blood was drawn, a 15 minute span total.
The first reading was 87 and the second was 75. The lab report listed glucose = 71 and plasma glucose = 70. I conclude that my meter correlated well in this instance. I'm hoping that my meter is more accurate than specifications permit.
Hi Emily..
Hey, I will drop off this link in hopes it comes through. Its about a young woman who discovered a possible cure for cancer. I heard of this young lady on the radio last week. Apparently the medication used to attack the cell is activated by a lazer of sorts. I dont know when it will all happen but doesnt look to soon. They said it would be years of testing first of course. My hope is someone is at the brink of the same discovery to a cure to diabetes. My poor daddy died 10 years ago of diabetes and he always talked about a cure. One never knows but like the cancer having hope, they say it will be years before something is actually acted upon. I imagine it will be the same for diabetes cure, never know though.
Hi delilahjed,
You are right - we never really know, and it should give us all the more reason to keep on trying. Once there was not even insulin to treat diabetics, but upon its discovery, it changed the entire field and gave diabetics a whole new life. Hopefully, a Practical Cure will be able to do the same - if we push for it hard enough.
I think insulin was discovered in the 1860s or 70s and they were in a perhaps more desperate "race for the cure" until 1918, when it became usable.
I wrote a long reply to this, but thanks to a misplaced HTML tag, I lost a few paragraphs. Here's my second try...
Like many others, I have lots of thoughts on the JDCA, and here I will try to describe some of them. These are off the top of my head and may not be particularly organized, so please forgive me if it's difficult to follow.
Many people "outside" the D-community think that the worst part about diabetes is about giving yourself shots. If that were the case, I'd be overjoyed. In fact, I'd happily give myself ten shots a day if I didn't have to worry about estimating the carbs in my food, how much insulin I have on-board and how much I need, and whether, at any given moment, it's safe for me to drive, exercise, or sleep. It's the never-ending action-reaction process that makes diabetes so difficult, not the shots.
I read something yesterday (link here) about research for an injection of something that stops the bad T-cells from attacking the insulin producing islet cells. If I could take this shot once a day, and then my body could regulate and produce its own insulin until the following day, I'd take it in a heartbeat. At least I wouldn't need to worry about how DiaPep277 I need based on all of the different variables used to figure out how much insulin I need.
Is this a "practical cure"? I'm not sure. To be honest, I forgot what JDCA's definition is, but from an earlier discussions on TuD with Stoyan, I recall it's slightly different than my own.
In any event, I must confess that my initial impression of JDCA was one of arrogance. They seemed to take a stance that they had the absolute best approach, while dismissing other inputs. When I read the press-release admonishing JDRF's new logo, I was really taken aback. It had all the makings of a petty Republican-Democrat feud, with nothing particularly beneficial except for some self-promotion. But the Alliance is young, and I'll give it time. I also don't know what (if anything) they do "behind-the-scenes".
Perhaps the reason JDCA's press-releases aren't as well-polished is because it is run by volunteers (or perhaps very low-paid employees). I have every reason to believe that its leaders are nothing but dedicated, but there is something to the art of persuasion and communication. People spend years in college to learn this. I'm not quite sure JDCA has the best group of communicators on-staff. But keeping with its mission that 100% of the money raised go directly to the cause of finding a cure, I understand this.
Conversely, JDRF does spend money on overhead costs. Salaries for workers, expenses to print fliers and mailers, and so forth. Their employees are trained communicators, experts in how to get a message out and how to do it effectively. They also raise visibility for the cause, whereas an organization like JDCA mainly attracts the eyes of the folks who already have a rooted interest.
They are run like a business. If an employee of JDRF, or any private business for that matter, earns $150,000 a year, but his efforts produce an inflow of an extra $500,000 per year, is it worth having that person on staff? I'd think so. Hopefully, what they lose in adminstrative and overhead costs they gain in volume and efficiencies. Proving that is very difficult, however, and it's why big charities such as the American Red Cross sometimes get a black eye.
I contributed to JDRF when I participated in the Walk, and I solicited frends and family to do the same. Also, when buying my morning coffee at Quick-Chek, I was asked if I wanted to contribute $1 to JDRF, which I did in exchange for my name on a green paper-cutout foot that now hangs in the store. There are now thousands of those little red, blue, and green paper feet hanging at Quick-Chek convenience stores across New Jersey. If not for this campaign, those individuals would not have contributed, and the money would not have been raised. It's not like they would have instead mailed $1 to Massachussetts General Hospital. Even if only half of that money goes towards curing diabetes, it's still money that wouldn't have otherwise been raised.
JDRF also did something good for me in that walk. It brought people together. For me, it felt good and was empowering to see the friendly mob assembled for a common cause. It was an instant bond with lots of others like me. Plus, it got me to finally meet a neighbor, the one I mention in May in this blog entry. A bunch of people walking around a college campus doesn't help the pancreas per se, but for me it was good for the heart.
Having said this, I'm not out to attack the JDCA. I admire how its members have come together to promote the goal of a Practical Cure by 2025 over social media. I like that they not only want a "cure", but they clearly state what that means. I like that they solicit our thoughts, but am not sure they know what to do with them. But I'm not sure they're reaching the correct audience efficiently. Reports are great for politicians - they love them, and hopefully they will support funding and promoting research organizations that are truly working towards a cure. And the JDCA is still young. But the average person doesn't want to read reports, we want a quick synopsis of who (which doctors/researchers/organizations) are doing what (BCG vaccine, islet transplants, DiaPep277) to cure diabetes, and how (web links, contact info) to reach them. Given the JDCA's cause, that information should smack me in the face when I visit www.thejdca.org (along with the statement that JDCA doesn't accept or distribute donations), and it doesn't. But like I said, it's young and deserves some time.
Touching on another topic discussed here, I don't believe there's a conspiracy to suppress a cure - perhaps I'm just naive. I also don't believe that BG meters aren't more accurate because of lack of motivation by the manufacturers. There are many, many meters out there, and all are pretty much the same. Until now, they've competed on how much blood they require, much time they take, and now "alternate-site" testing (which is purely a marketing ploy, IMO). Accuracy is still up for grabs in terms of global domination of the BG meter market. (as an aside, I also believe that the circulation of blood, and the distribution of glucose within the bloodstream, will always result in some degree of fluctuation or inaccuracy).
I think I've spent too much time writing this, and I have to get back to work, so I'll stop here and maybe add more later on. In the meantime, I look forward to reading replies.
Scott,
Thanks a lot for taking the time to write a very thoughtful and thorough reply on this topic. It's unfortunate that the message board had to go and eat some of your thoughts. Hate when that happens. Of course, thank you as well for taking a look at our little organization and being interested in what we have to say.
I'm glad that your initial impressions have taken on a bit of a transformation. As we are constantly developing our methods and means of distributing our message, there may be a hiccup or misinterpretation from time to time. It's good to know that people have patience to continue reading, and more importantly, questioning.
To me, I'd like to see above all that people begin taking a more inquisitive stance towards the prospects and realities of the diabetes charitable universe. Like you, I participated in a walk recently. It was the American Diabetes Association's StepOut walk in New York City sometime last November. The entire event, from the fundraising portion to the actual walk, made me feel that despite my disease I was extremely fortunate. I raised around $2,000 and walked with my mother, father, brothers and some more of my family. Seeing so many people walking across the Brooklyn Bridge on a beautiful day felt great. A big brunch with my family and friends in the Financial District after felt even better.
Looking back however I feel an overwhelming curiosity on just how educated many people there were on what they had donated to and how their money was going to be used. Obviously we can argue the semantics of StepOut to "STOP" Diabetes all day - but in the end I feel that the majority diabetics are going to favor the delivery of a cure over the promise of prevention. While I don't think everyone who visits us will end up reading our reports and investigations - though it'd be great if they did - both the JDCA and I desire a more expansive discourse pertaining to the progress of a cure and how the big charities are allocating their massive influx of funds as the disease expands in scale. Further, it's to help advise big donors - such as our founder Brian Kelly, who funds us entirely out of his immense generosity - where their money can make a difference.
All things considered I find the reports to be informative enough to not be considered simplistic and concise enough to not be considered a complete drag. I think a problem for us and pretty much any diabetic interested in cure news or progress is that there's so much news on the subject and it eventually becomes hard to really sort out through the static. What's working? What isn't? A community like TuDiabetes has an intense and passionate knowledge about these subjects. People such as yourself are clearly interested and willing to dig through the mass of peaks and valleys that come with this field of "hit or miss" kind of research. Our process involves trying to synthesize the aforementioned mass into something resembling an evaluation of the current landscape for all diabetics - new, old, donors, type 1, type 2, whomever. You'll also notice that most of our interviews have gone away from the usual formalities of a diabetes interview and more into an honest, hard look into what the current progress is and how things can improve.
In terms of the donation issue, I'm not sure how to avoid that assumption other than a tremendous font on the front page or tattooing it on our foreheads in the next video. I'd like to think the total denial or solicitation of donations gives us a certain uniqueness, but also troubles people's first impressions. I remember reading your blog post slamming our JDRF re-branding report (unless that was miraculously another Scott) and thinking about how I felt a little torn. That's what I really like about TuDiabetes, the JDCA and the DOC in general - I learn a lot by reading other people's thoughts. We want to encourage that kind of back and forth and hope that as we grow, so does the participation from people across our platforms. The great and easy thing is that all of the people involved in these sites have the same goal: a cure. The hard part is educating people and creating an innovative and constructive conversation on how we get there sooner rather than later.
Congratulations on your newborn son by the way. I hope his pancreas is happy, healthy and functional in all the ways that ours aren't haha.
Drew,
I appreciate your response. Having to go through typing some of it a second time, I was a bit frustrated and some of my frustration may have indeed shone through on my message.
Yes, my views on the organization have morphed a bit. I'm still not quite entirely sure how you seek to define yourselves (in particular, what does it mean to "partner with donors"). At first, I thought you might be like a mutual fund instead of individual stocks. Rather than deciding for myself which recipient could best use my money to maximize return (a cure), I could invest in JDCA and you would allocate those funds for me. Clearly, now I see that's not the case. While I still think a "The JDCA Top Ten" link on your page might be a good place to help steer us in appropriate directions, it appears you don't want to endorse any particular charitable or research organization. You want to educate us to allow us to make our own decisions.
And that's fine, but the largest outpouring of donations doesn't always come from the D-community itself, rather it is from the family and friends of people with diabetes (of whom are greater in number, and for the most part haven't become dismissive of any realistic hope for a cure). Referring to my neighbor with T1, she raised an incredible amount of money during her first JDRF walk just after diagnosis. Family and friends were shocked and desperately wanted to help. The following year, the donations diminished as the donors moved on to other parts of life. I know of other people in which the names have changed but the story is the same. The ones giving donations don't fully understand diabetes and can't understand it like those of us who live with it every day. Thirty years after my diagnosis, some people in my close family still don't understand that there's more to it than "yes, you can have this" or "no, you can't have that". But they still would be willing to help -- but we need to simplify the process for them. Like those who want to invest their money but leave it to a fund manager to determine how to do it, I think the JDCA could be a great help for those who want to contribute to a cause, want to diversify (not put all their hopes on one researcher), but don't know how to make their contributions most effective.
You are right in saying there is a lot of news out there to sort through. I think I've become pretty good at identifying the scams (acai juice and the like) right away, but other stuff gets lost in the delivery (did I read about that one already? Is it worth my time?). Life is hectic, especially with a newborn son at home (as well as a 4-year old) and sometimes I just look for the "executive summary". By the way, do you have an RSS feed? I'd be glad to put a JDCA box on my Yahoo! home page near my favorite D-related blogs, so I can see when you've got something new to say, when I've got the time to read it. Usually, when casually perusing Facebook, I don't have the time to read a link to a report, and then I forget about it.
Oh, and speaking of blogs, when you mention a blog entry that "slams [y]our JDRF re-branding report", I think I know the one to which you are referring. That was indeed another Scott, not me.
I did enjoy watching the video that Emily posted at the top of this message. What struck me most was where you guys do your work - what looks like a small brownstone apartment in Brooklyn (yes, I know that's not really it) with charming brick walls and no real embellishments like in a conventional office. I still don't know if this is a full-time gig or something you do in your spare time, but I know that you are indeed dedicated as I see your responses come to commentaries like these (and the above-referenced blog) all the time. Also, the part in the video where your founder talks about his son being diagnosed struck a nerve with me -- that is my biggest fear. I can live with diabetes, but I don't know how I can live with giving it to someone else. How my parents handled my diagnosis (at age 7) is a mystery to me. I do hope both of my children grow to be diabetes-free, and if they are to develop it, that there's a way to stop it early in its tracks.
Thanks for your well wishes. I do honestly believe we're getting close to curing this thing.
Scott
I wish I could've been in that ADA walk (I live in New Jersey, not that far off!). Not necessarily for the money raised, but for the sense of community to myself and the awareness to the community. I've driven across the Brooklyn Bridge and taken the subway across the Williamsburg, but never walked across it. It must be quite an experience.
Talk about strange and fitting timing. Last night I saw I had received a package from the ADA. I had no clue what it could have been so I opened it with some curiosity. This was inside. I was really pretty surprised. The handwritten note was from someone at the ADA who said that the package had bounced back a long time ago (only a little bit after the walk last year) and she wanted to ensure that I received kudos for my fundraising efforts. I thought that even despite my most hardened skepticism that this was a nice and personal gesture by the ADA, so good job on them. Sometimes it's nice to just be patted on the back a little.
Your point about the families of diabetics and the like is an extremely valid one, and one that I sometimes forget to account for. I'm very close with my family and relatives but as you've said, no matter how well they know you, they almost definitely don't grasp diabetes and what it entails the way we do. We can't fault them for this - they don't have to deal with it - but it's hard to not become frustrated with the constant barrage of redundant of misguided questions. One of our reports dealt with the myths and misconceptions that hinder cure progress and why we need to be cognizant of their existence. Whether it is in regards to a cure or general treatment, clearing misconceptions pertaining to diabetes is a tremendous hurdle that we're all constantly trying to get over. I've only been dealing with type 1 for around 8 years now, but I wholly understand that this is no easy task.
I manage our social media accounts and work with some of our outreach. While I wish education could be one of our top priorities, I understand that a streamlined focus on cure news/progress and donor advisement is our main priority. I think in a perfect world we'd be a second step for many people who are trying to educate themselves about diabetes, specifically how the current charitable universe for diabetes is composed. I must say; thank you for your suggestions in terms of interface and interactivity in regards to our website and mission. We're always looking for ways to improve and inform people who are interested in us. Speaking of that, you can add us to your RSS feed. Check the top right corner of our blog: http://www.jdca2025.wordpress.com
It's good to know that Brian Kelly's story is one to which you, and surely many others can relate. The organization is truly a labor of love, aimed to ignite some discernable change. Considering I'm only turning 23 next month, kids are a little bit away for me. But I can't say that the thought of having a child stricken with diabetes hasn't crossed my mind. The very thought of it breaks my heart. I was "lucky" enough to be diagnosed at age 15, a point at which I had at least a little bit of a grasp on what was happening and how my life would have to change. I can't imagine having it happen to me any younger.
The walk over the bridge was truly beautiful - it always is. I will never tire of seeing that skyline. Unless you're scared of heights, the entire bridge is incredible. Love how the wooden planks on the ground shrink and expand depending on temperature, to the point you can see the water so far below you. Very surreal indeed.
Banting & Best would probably be turning in their graves If they saw the current and only treatment for type 1 diabetes is still Insulin. In nearly a century since Insulin's commercialization its baffling to me they still haven't figured out an improved way to treat diabetes. Yeah more gadgets but the core of treatment remains the same. Despite how anyone else feels to me it seems ludicrous that we still have to walk around battling BS all day long. It's so taxing on the mind and sole it's not even funny. I have no idea how anyone suffering long term like myself has any sanity left. It's cruel way to have to survive and I don't see it any other way then pure human suffering. Unfortunately once diabetic the only way to achieve peace is either a cure or death. I gotta believe people that are six feet under are at far more peace then I can dream of.
Running, martial arts, playing guitar, reading, playing with the dog, kibbitzing w/ people on Tu, Facebook, etc. also can be peaceful.
They also serve to motivate me to keep my BG on a leash. Tuning a guitar w/ low blood sugar can be ridiculous and it's important to keep some quick acting carbs handy, just in case...
Hey Gary..
Well let me tell ya, no-one loves to eat more than me, I actually eat more than my husband who is 6'3 and about 260 lb. I have recently been put on insulin, the killer to me is the needle pricks, sometimes you feel it, other times you do not. Its cutting off the food with sugar that bums me out. A large bowl of chocolate icecream and such. However, I love veggies and I do eat right for the most part. I just figured it will all be in Heaven to have and I dont have a choice here but to eat right or eventually die as you say. Keep your chin up. Eating right is key but when your a young person its just so much harder if you ask me. Try to beef yourself up with some hope there, in at least we are still alive..thats a good thing right? have a good day!