What can YOU do?

Today is the last day of National Diabetes Awareness Month, and also the last day I will be updating my blog for awhile. I will probably keep updating every few weeks or so, since I’ve actually enjoyed writing about diabetes, but I’ll no longer be posting daily.

So now that you are a diabetes expert after having read my blog, what will you do with all of your new knowledge?! We all learned in school that knowledge equals power. And since we also learned from watching Spiderman that “with great power comes great responsibility,” it is now up to YOU, dear reader, to act responsibly with regards to diabetes. Here are my ideas on how you can do that!

Knowledge = Power

Support

You can support the cause of diabetes in many ways. If you have friends or loved ones with diabetes, support them in the changes for good that they are making in their life. You also can support local organizations that help people with diabetes by volunteering your time and talents. And, if you are able, you can support diabetes causes financially by donating to organizations like JDRF!

Prevention

Another great way to act responsibly with your diabetes knowledge is to engage in prevention activities. You can help yourself and those around you by participating in and encouraging healthy eating and increased physical activity. Walk to places you need to go, instead of driving. Instead of family movie night, take a walk or ride bikes together. Encourage your local schools to offer healthier food options to your community’s children. Vote for bond issues that create and support parks and other recreational resources in your community. There are SO many little things you can do to help prevent diabetes!

Awareness

After following this blog for the last month, you should now have enough knowledge and vocabulary to talk about diabetes, even if in a very simple way. TALK TALK TALK to people around you! Encourage your family and friends to know their diabetes risk, and to start a conversation with their doctor about it. Tell people that our country is on the brink of a diabetes epidemic, and encourage people to find out more about diabetes for themselves. Participate in a little diabetes myth-busting. If you hear someone say something wrong about diabetes, politely correct them. Allowing false information to be spread about diabetes does everyone a disservice. Take the mystery out of diabetes by sharing the knowledge that you now have with others.

See, it’s easy! And I’ve created a nice little acronym for you to remember your role. Just remember the word, SPA (Support, Prevention, Awareness)!

Thanks again for reading my blog and for offering comments and support along the way! And, thank you for caring enough about me, and other people with diabetes to keep reading!

Until next time, dear readers!

With lots of love,

Erin

What has diabetes given me?

While I would love to have never been diagnosed with diabetes, having a chronic illness has taught me a lot and given me a lot of experiences that I would never want to give up.

I think the biggest thing I have learned from having diabetes is responsibility. Like I said in an earlier post, diabetic kids grow up fast and learn how to be responsible at a young age. While I do believe this took away some of my ability to just be a kid, the responsibility I learned from being diabetic has kept me out of a lot of trouble that many of my peers have gotten into.

Another important thing I have learned from having a chronic illness is empathy. I tend to put myself in other people’s shoes a lot, especially people that have any kind of health-related problem. I know what it feels like to have to perform at 100% when you feel like 30%, and I know that at any given time, most people are trying the best that they can.

I have also learned to fight for what I want, and to not let myself use diabetes as an excuse to not do what I want to do. One of my greatest personal diabetes accomplishments was living for 3.5 months in Ghana. It was hard! It was hard to find food to eat, clean water to drink, I had to bring ALL of my diabetes supplies with me, it was hard to get any exercise other than walking around, and on top of all of that it was ridiculously hot! Also, while I was there, I took a week long trip to Burkina Faso, during which I only had one small back pack full of stuff with me! Anyone that’s ever traveled with diabetes will know that it is hard to pack light! So, I’m pretty proud that I kicked diabetes’ butt that summer.

I have learned how to work the system. This also falls in the category of fighting for what I want. I have learned that with patience and perseverance, you CAN win the battle against the red tape of the health care system. Let me just tell you that the words “let me speak to your supervisor” are the 6 most effective words in the English language!

And, finally, I’ve met so many wonderful people! From my friends at diabetes camp, to people I’ve volunteered with, to an on-line community full of support, diabetes has taught me that there is SO much good left in humanity, even when it doesn’t always seem like there is!

So, in summary, even though it really stinks sometimes to have gotten diabetes, it almost makes up for it through all of the things it has given me.

What does the future hold?

Sorry for the late post today, peeps. I’ve been traveling today, so I didn’t quite get to write this as early as I would have liked.

What will having diabetes mean in the future?

Most of my idea of what diabetes will be like in the future is speculation. Obviously, we know that many more people will have diabetes in the future, unless we as humanity get our act together and start getting more exercise and eating better! I suspect that there will be many more innovations in the area of insulin pumps, continuous glucose monitors, and other technological advances like the artificial pancreas. I also think insulin manufacturers will continue to make new insulin analogs that work in better and different ways. I hope that there will be better innovations in the area of how insulin works, and how other diabetes medications work. And, ultimately, I hope there will be a cure!

With regards to what diabetes holds for me personally, I know that since I’ve had diabetes for so long, I will have complications. I have already had problems with my eye sight because of diabetes (I had really slight blood vessel leakage that was causing a weird spot in my vision), but as I’ve tightened up my blood sugar control, those complications have healed themselves. I’ll probably have some more retinopathy and some neuropathy when I get older. It seems those are the complications it is almost impossible to avoid when you’ve had diabetes for a long time. And, if I ever want to have children, diabetes will make that a lot more difficult and potentially risky too, so there’s that to look forward to as well!

But, I AM HOPEFUL! I know that while I will probably have complications from diabetes in the future, I am hopeful that improvements in medicine and technology will also mitigate those complications!

And, I am always hopeful for A CURE!

Diabetes (or any chronic illness) on the Cheap.

As a postlude to the last post about health care & insurance, I thought I’d write a post about how to be successful with diabetes (or any chronic illness) on a very limited budget. There have been several times in my life where I have had to struggle to get the health care and medicine I needed. These times included:

· The last part of my undergraduate college years, when I was kicked off my parents’ insurance, and when the health plan the school provided for students was no where near good enough to help me out.

· After I graduated when I was unemployed for a few months, and had no insurance.

· When I was employed with 2 jobs to make ends meet. My full time job wouldn’t insure me until after 6 months of full-time employment (during which 6 months they did everything they could to not schedule me enough to work full-time hours). The other part time job I had was a stepping stone to a good full-time position at company, but I had to wait until a full-time position opened up. As soon as I was offered a full-time position, the company immediately gave me health insurance, but until then, I was on my own, working two jobs.

· During graduate school when my school’s health insurance was good, but their prescription drug coverage plan was completely inadequate for anyone who needed medication for a chronic illness.

· After graduate school while I was trying to find employment.

So, as you can see, I’ve had a lot of practice figuring out how to get health care for myself! It was a frustrating challenge and I ended up spending a lot of my savings, my student loan money, and my family’s money on health care. In addition to depleting my and my family’s financial resources on medical costs, I also discovered and utilized several other resources available. So, here they are!

Resources for Health Insurance/Doctor's Visits

The absolute best way to get health insurance for a diabetic is to get it through an employer. It’s impossible, right now, to purchase an affordable private health plan for someone with a pre-existing condition. So, if you can get a full-time job that offers good health care, that’s the best way. If not, there are “high-risk insurance pools” in each state that you can join, through which you can purchase health coverage. These are still very expensive. When I was working two jobs but still couldn’t get insurance, I purchased one of these plans (which was GREAT) but it cost $400 a month (which, when you only make minimum wage, is a lot of money). I paid for part of it, and I was blessed enough that my church helped pay for the rest of it until I could get insured through my job.

If you are unemployed or disabled, you can look into Medicare or Medicaid. If you have a child who needs health coverage, CHIP is a great resource. Sometimes, depending on your situation, your best option will be to get health care through free clinics. Many city and county health departments have free clinics, but it is often hard to get in them, as you have to wait a long time, so be prepared for that. Contact your city or county for help in locating a free clinic.

For more information about what kind of health care is available to you, in your particular situation, the government has set up an awesomely helpful new site called healthcare.gov. I highly suggest checking it out if you need help getting medical care! It is VERY easy to use too!

Medication

If you don’t have prescription drug coverage, there are a few ways to find cheaper drugs.

First, you can try to purchase them at cost through cheaper pharmacies, or wholesale groups. This can still be very expensive though.

You can also try to get your medication from another country like Canada, or Mexico. One time, in college I had a roommate, whose family lived in New Mexico near the border, pick me up some Mexican insulin while they were there. It still wasn’t cheap, but it was a lot cheaper than buying it at full price in the U.S. ($35 for a bottle of insulin, compared to $80). It was probably illegal, and I’m not promoting this as a viable, sustainable option. But, it was what I had to do at the time to literally keep myself alive, so I’m not ashamed to say I did it. God bless that Mexican insulin!

I think the best option is to use a Prescription Assistance Program. Most drug companies have “Patient Assistance Programs” that will supply you with free medication if you can’t afford it. You have to fill out a bunch of forms, send them proof of your income (usually in the form of your last tax-return), and have a prescription from your doctor written. Then you submit all that, and wait to see if they will approve you. If they approve you, you’ll get a letter, or a phone call, and they’ll start sending you your drugs. They will not, however, just deliver the medicine to your home. They deliver it to your doctor’s office, so you must pick it up there. It’s great that they have these programs, but they assume that people can actually afford to go see a doctor in the first place, to get them to write you a prescription. If you don’t have health insurance, it is expensive to see a doctor! So, these are good programs in theory, but it is hard to utilize them. I read an article somewhere (I can’t remember for the life of me where, now!) that the drug companies offer this service, because if they can retain customers on their specific brand of drug, even through that customer’s period where they are unable to pay for their medication, those customers will be more likely to continue to use their drug when they regain their ability to pay. So, don’t think the companies’ motives are totally altruistic here. They’ve done the math, and they know these kinds of program are good for their bottom line. I've used these programs A LOT, and every time I feeling like I'm selling my soul to the devil, but sometimes you have to bite the bullet and go through all the red-tape to save your own life in any way that you can.

For more information about prescription assistance programs, check out this website http://www.pparx.org/, or http://www.needymeds.org/

In Conclusion: Put the Shame where the Shame Belongs!

If you are on a tight budget, help IS available, but it is often hidden well! If you need help navigating the system, please contact your states’ health insurance office. If you are using the facilities of hospital system, they often have medical social workers who are skilled in navigating these difficult financial situations and getting you in touch with the resources you need, so please ask to speak to one of them!

Above all, if you face financial hardships because of medical costs, DO NOT BE ASHAMED! Hundreds of thousands of Americans go into medical bankruptcy every year, so you are not alone out there. Let’s place the SHAME WHERE IT BELONGS, back on the companies and systems that charge exorbitant prices in the first place.

So please, spread the word about these resources to everyone who might need them!

Diabetes, Health Care, and Insurance

The subject of health care is a bit of a touchy one these days, so I probably won’t write as extensively as I would like to, just so I don’t ruffle anyone’s feathers. And before I get started, I just want to be completely transparent with you by telling you that I am now, and have been for a long time, a proponent of universal health care (which, by the way, is VERY different from socialized medicine, so let’s not get the two confused and please get more informed if you thought they were the same thing). So, just so you know, that’s part of my world view when it comes to health care.

The "System"

If you are a diabetic, you are automatically thrown into the health care system -whatever system that may be- whether you like it or not. At the very minimum, as a person with diabetes you have to see doctors and you have to take medicine (usually) on a regular basis. These are the minimum things you need to do in order to stay alive. So, automatically, at least in our current health system, those two things incur costs. If you are lucky enough to have insurance, you usually don’t have to bare the entire brunt of the costs of doctor visits and medicine yourself.

There are two main themes I want to get across with regards to diabetes and health care. The first is about access to insurance, and the second is about cost and prevention.

Access to Insurance

With regards to access to insurance, diabetics (and others with chronic illnesses) are totally screwed. It is virtually impossible for me to go out into our privatized insurance market and purchase insurance at a competitive price, and most often it is completely impossible for me to purchase it at all! Insurance companies use pre-existing condition clauses to eliminate the risk associated with insuring someone who has a chronic illness. My only option, right now, as a diabetic is to purchase insurance through a group plan (like through an employer) or receive it from the government (but only if I qualify by being disabled enough or poor enough). I am literally choked out of and not allowed to participate in the privatized insurance market. As it stands right now, I am not allowed to participate competitively in that market because I have a disease. I have no control over whether or not I have that disease, and I did nothing to bring it upon myself. In any other realm of society, being disallowed to fully participate in something other citizens can fully participate in because of disease or disability would be considered discrimination. For some reason, in the insurance market, it is legal to discriminate. And, let’s not mince words about this. Insurance companies bend over backwards to find ways to eliminate you from their competitive market. I have known plenty of people who have been denied the ability to purchase insurance as adults because they had been diagnosed with asthma once when they were a kid, because they took anti-depressants for 3 months in high-school, or because they had childhood cancer. Diabetics, and many other people who are seemingly totally healthy, have a very VERY difficult time getting health insurance.

Cost vs Prevention

The second main theme I want to get across in speaking about diabetes and health care is that of cost and prevention. Or, really, cost versus prevention. Diabetes, like any other chronic disease that has to be managed on a daily basis, is seriously expensive. There is a constant battle between spending money upfront and properly managing the disease, or not spending the money now and paying for it later when complications arise. From a patient’s standpoint, the decision is clear. Money spent now on proper treatment (like being able to test your glucose a lot, being able to take the best medication for you, being able to see the doctor as much as you need to, all in order to maintain good control ) will keep you from having severe complications (like foot amputations, serious infections, blindness, kidney disease, heart disease, etc.) in the future. Those future complications and resulting hospital stays, etc. will be MUCH more expensive than the money spent NOW on proper disease management. So, if it were up to a patient, and if it was always monetarily feasible for the patient, the patient would always choose the “pay now to prevent bad things later” option.

The problem comes from the fact that health care is just too damn expensive. There are a lot of reasons why it is so expensive, but I don’t want to get into all of that. I just want to point out that the exorbitant costs of health care literally remove a patient’s ability to decide whether or not to “pay now to prevent bad things later.” Faced with the decision, for example, to buy groceries to feed your children, or to regularly fill your prescription for your diabetes drugs, people will probably skimp on their drugs to feed their kids. This happens, every day in America, people!

In my opinion, most insurers and pharmaceutical companies aren’t doing much to help the problem either. Or if they are, they’re not doing a very good job at communicating that to the patient community. I think a lot of private insurers act under the assumption that “hey, we can be stingy with what we’ll pay for now, because later when complications arise, those patients won’t be covered by our insurance anyway, they’ll likely be on Medicare, and the government will have to worry about them.” This is probably true. Most older people, when they quit working, will receive health insurance through Medicare, and the consequences of earlier disease mis-management will fall on the government.

I think that reasoning is one of the big reasons why the new health care bill requires that all preventive care be covered in full buy insurance plans. If you keep people healthy now, by covering the basics, you won’t have this huge population of sickies on your hands once they are all on Medicare in the future. And trying to lower the cost of Medicare aside, isn't it just good, common sense to keep our bodies healthy now, so we can still use them in the future?

In Conclusion . . .

So, yeah, I’ve spoken my piece. I realize this post has been one long ramble, but I want you all to know the challenges I face on a daily basis in our health care system. I think everyone agrees that health care in the U.S. needs to change. I hope that we can create a system wherein those with disease or disability can fully, competitively and fairly participate in the system, and wherein we can treat our bodies well today, so that we can live a healthier tomorrow.

Diabetes Thanksgiving

Sometimes it’s hard to be grateful for diabetes, but since it’s Thanksgiving today, and because I like to try to turn difficult things into positive things, I thought I’d try to focus on the diabetes-related things I am thankful for. Here is a quick list.

Today, I am thankful for . . .

· Modern Medicine-because without it, I wouldn’t even be alive to write this.

· Loving family & friends-who see me as a person first, who just happens to have diabetes.

· Diabetes camp-for making me not only a better diabetic, but a better person.

· Insurance-While our insurance isn’t perfect, I know what it’s like to not have any, and I know that it could be a lot worse, so I’m grateful to have it.

· The diabetes community-I’ve learned so much from these people, and received so much encouragement and support from them. Being able to connect with them over the internet has helped motivate me in so many ways.

· All of you!-for caring enough to read my blog and seeking greater understanding!

Happy Thanksgiving! Take some time today to make a mental list of all the things YOU are grateful for!

A Day In the Life!

I thought it might be interesting to chronicle what it’s like to be diabetic for one day. This is a catalog of all my diabetes related actions last Sunday. This is a pretty simple diabetes day, because I didn't exercise, and there were no unexpected events like friends calling to go out to dinner at the last minute, and I was never really in a place where it was difficult to treat myself when I needed to. If I were at work, or school or something like that, it would be a little harder to test, take shots, and eat when I wanted or needed to.

8:30 AM-Wake up, test blood sugar.

9:00 AM-Take Lantus (long-acting insulin) shot.

9:30 AM- Test, figure out what I’m going to eat for breakfast, calculate carbohydrate count of breakfast, calculate Apidra (short-acting insulin) dose for breakfast based on breakfast carbohydrate count & current blood sugar. Take insulin, wait a few minutes for it to start working, then eat breakfast.

11:15 AM- At church now. Test blood sugar to make sure I won’t go low while I’m directing the music for church.

11:30 AM-Try to not get nervous about directing the music, because when I get nervous, the adrenaline rush that comes with nervousness drives my blood sugar high.

12:30 PM-Test blood sugar. Sure enough, I’m high from the nervous adrenaline rush. Take a correction dose of Apidra insulin to bring myself back down.

2:30 PM- Home from church now. Test, figure out what I want to eat for lunch, calculate carbohydrate count in lunch, then calculate Apidra insulin dose based on carbohydrates I’m going to eat & current blood sugar level. Take insulin, eat lunch.

3:30 PM-Debate about taking a nap or not. If I take a nap, I will probably be high when I wake up, because afternoon naps tend to do that to me. Give in to the sleepies, and take a nap anyway.

5:30 PM-Wake up from nap, test blood sugar. Surprisingly, I’m not that high! Huzzah!

7:00 PM- Time for dinner. Test blood sugar, decide what to eat for dinner, calculate carbohydrate count, take Apidra insulin dosage based on carbohydrate count & current insulin dosage.

9:00 PM-Take Lantus insulin.

12:00 AM -Test before bed, make sure I’m at an appropriate blood sugar level to sleep because I don’t want to go too high or too low while I’m sleeping. Make sure I have some fast acting sugar near my bed in case I go low in the middle of the night.

As you can see, I'm constantly doing math! Which is kind of ironic, because it was always my weakest subject in school. :) Anyway, you can probably see how doing this day in and day out could get old, very quickly. A lot of diabetes management is dealing with the mundane on a day to day basis, and trying not to get burnt out. But, that's why they call it a "chronic" illness. :)

Anyway, tomorrow, I’ll wake up, and do it all over again! And again, and again!

What Can I do/Can't I do because I have diabetes?

There are very few things I CAN'T do because I have diabetes. Here is a brief list of things I either can't do, or that are much more difficult to do because of diabetes:

1. Get SCUBA certified. I can get certified, but I have to have a note from my doctor saying I’m in good control.

2. Be a Commercial Airline Pilot-If you are insulin dependent, you just can’t do it right now.

3. Become a CDL Trucker-As of 2003, you CAN become a commercial interstate trucker, but there are a load of tests and documentation you have to go through to do it, so unless you have a real burning desire to do that, it's probably not worth the hassle.

4. Get a regular driver’s license-Depending on what state you live it, it can be more difficult to get a regular driver’s license. For example, in Ohio, I have to have a special two part license. The second part of it is called my “medical restriction card” and I have to get it renewed every year. My doctor has to fill out a form saying I’m in good control enough to drive and that they are following my condition. It is very frustrating (especially when the BMV is ridiculous, and can’t keep track of the forms you send them, and loses them along with your HIPAA protected medical information—but that’s another story). Also, and I just have to say this, why is it so hard for me to get a license, but not a 90 year old person who can barely see over the steering wheel? I'm just sayin' . . .

What CAN I do because I have diabetes? EVERYTHING! Well, I can pretty much do anything I want (with the exception of the above list), although things might take a little more planning on my part. There are a few things that I can do specifically because I have diabetes that other people can’t:

1) I can have food in places where other people can’t, like at rock concerts & football games, or in the BYU library!

2) I get to go to diabetes camp, which is just awesome, and I feel bad that other people can’t.

Anyway, I thought I’d share a few interesting facts about the doors diabetes shuts and the doors it opens.

Monday Memory Lane

I dug these gems up the other day when I was cleaning out our spare room. I thought they would be very appropriate to post, and since today has been a long day, it gives me the added benefit of not having to write a lot either! Enjoy!

By way of explanation, the first three photos are taken in my hospital room when I was diagnosed with diabetes at the age of 11. You can see I'm still in the hospital bed, hooked up to IVs. The last photo is from diabetes camp!

My good friend Margarget R. came to keep me company while I was in the hospital! She was so entertaining and helped me keep my mind off of all the craziness going on! She was such a good friend! Also, I'm pretty sure that meal above was the first full meal they let me eat in the hospital. Mmmmm turkey sandwich!

A close up of Margaret and me, my teddy bear, and the infamous envelope (blanket)! Also, notice the library book all about diabetes on top of my bed.

Someone thought it'd be funny to put my teddy bear in the baby crib (infant cage) that was in the hospital room with me. Not funny!

Me and Rich Humphreys (the director of Camp Ho Mita Koda). It was the 4th of July, and Rich was decked out from head to toe in American Flag-wear. Yes, his pants were the stars & stripes as well. I have yet to meet anyone else who can pull off the bandanna look like he can!

So there you go, peeps. A little photographic insight into a few diabetes moments in my life. Enjoy!

The Diabetes OC

The Diabetes OC is not a special area of Orange County, CA designated just for diabetics. In this case, OC stands for “on-line community.” Over the past 10 years, and I’d say especially over the last five years, the on-line community devoted to diabetes has exploded! There are all sorts of social networking sites, web-sites, blogs, chat rooms, and user groups devoted just to diabetes. There are SO many of them, that I really don’t even know how to write a post about them all and what they do. But I'm going to try!

I’d say the majority of these sites are patient-oriented and patient founded. These communities are platforms for a variety of diabetes-related activities. People share experiences, recipes, treatment advice, act as support groups for each other, connect with other people just like them, and I've heard there are even some that are devoted to hooking up single diabetics with each other! Crazy!

Here are two of the sites I personally visit frequently. I realize that there are probably a bunch of other awesome sites that I don’t know about yet, just because I haven’t found out about them, so please don’t think I’m playing favorites here. Just FYI, I’m getting no kick back from any of these sites, and they haven’t asked me to feature them at all.

· Tudiabetes.org-This is kind of like facebook for diabetics or people affected by diabetes. There are tons of support groups and forums, and you can have your own profile page, can keep a journal or blog on it and so much more! I really love this site. (to be totally transparent here, I do need to say that my brother works for a company that supports this site, but I found out about that after I found out about tudiabetes)

· Diabetesmine.com-This was one of the first sites on the Diabetes-OC that I found. The author writes a lot about what’s going on in the diabetes industry, especially with regards to new technology and new drugs. She also writes about different aspects of daily living. One of the coolest things about this site is that she hosts the Diabetes Mine Design Challenge every year, which has produced some really cool designs as of late.

So, there you go. Now, if this doesn’t make you want to go watch old episodes of “The OC,” I don’t know what would.

Diabetes Etiquette!

So, say you meet someone for the first time and you find out they have diabetes, or someone in your family is suddenly diagnosed with diabetes. What should you say? What should you do? What shouldn’t you say or do?

Occasionally, as a person with diabetes, you can encounter people who might say some rude things. Usually, people don’t even know they’re being rude, and most comments that could potentially be offensive arise because people aren’t educated about the causes of diabetes or how people with diabetes actually treat themselves. (But YOU are, now, since you’ve been reading my blog!)

For example, when I was a kid, and was first diagnosed, a lot of people used to say to my parents “Wow! You must have fed her a lot of sugar when she was little”. Um, no. (See “Diabetes Myths” post!)

Now that I’m an adult, when people find out I have diabetes, I sometimes get “Oh, you must have lost a LOT of weight!” Also, no.

So, I’m passing along some diabetes etiquette, so you can all know how to help those in your life with diabetes, and so you can also know when to butt out.

I’m taking my list from The Behavioral Diabetes Institute’s Diabetes Etiquette Card for people who don’t have diabetes. It’s pretty much the top 10 Do’s and Don’t’s of diabetes etiquette. Some highlights include:

· Don’t offer unsolicited advice about my eating or other aspects of diabetes.

o Example: As I’m reaching for a piece of candy “You know that has sugar in it, right? You can’t have sugar!”

o It is probably OK to ask real, genuine questions about my diet, though. Like, “Hey, you’re coming over for dinner, are there any special things I need to know to prepare a meal for you?”

· Do offer to join me in making healthy lifestyle changes.

o Example: If I’m trying to get more exercise, offer to be my walking partner!

Please take the time to check out all 10 Do’s & Don’ts. You can even print out this in a handy card form!

Also, I wish there was a diabetes etiquette card for people who DO have diabetes. I think there are a few things that people with diabetes can do to smooth over potentially difficult situations with non-PWDs. For example, if it is time for you to take a shot and you are with people who don’t know you very well, or who have never seen you give a shot, it’s probably polite to say “hey, I have diabetes, and I need to take a shot of insulin right now. So, if that will make you squeamish, you might want to look away for a few seconds.” I’ve found that the more I explain to people what I’m doing and why I’m doing it, the less awkward situations become. Maybe I’ll create a card for PWDs someday.

Any way, have fun practicing your new-found diabetes manners!

Next Up: The Diabetes OC

Diabetes Camp!, or, Ode to Camp Ho Mita Koda.

When I posted about my personal diagnosis story, I wrote that the first thing my doctor told us after he dropped the “Big D” on us, was that my parents should send me to diabetes camp. That turned out to be the best single piece of advice we ever got about diabetes! Why was that such great advice, and what the heck is diabetes camp, you ask? Well, I will tell you!

Diabetes camp is, of course, summer camp just for children with diabetes! There are lots of different camps, of varying length and style all over the country. I was lucky enough to have been able to attend the BEST diabetes camp in the entire world! That camp was Camp Ho Mita Koda, located in Newbury, Ohio.

Camp Ho Mita Koda (or as we campers called it, “Camp Ho”) is one of the oldest residential camps for kids with diabetes in the U.S. (Read a full history of Camp Ho, here.) “Ho Mita Koda” means “Welcome My Friend” in the Sioux language. It was founded in 1929 by Dr. & Mrs John, who had a special place in their hearts for kids with diabetes. Back then, insulin was just barely made available, and not many people had access to it, so Dr. & Mrs. John created a place that those suffering kids could go where they could spend a few weeks having fun, being around others like them, and just being kids!

Camp Ho basically still serves that same function. When Dr. & Mrs. John first started it, they took about 6 kids to their summer cabin in Newbury, Ohio. Now the camp houses about 60 kids, ages 8-15, a session with multiple residential sessions a summer, plus a couple of day sessions for tiny kids and their parents. It has everything a normal camp has like arts & crafts, swimming pools, sand volleyball, basket ball/hockey courts, tennis courts, an archery range, a boating/water front program on the lake, a ropes course & climbing wall, a “great hall”, cabins for kids to stay in, places to have bonfires, totem poles, and a bath house. And it also has a few “unique” things too, like a medical “dispensary” and a bunch of statues to honor things like research dogs that were used to develop insulin and Fredrick Banting (the guy who figured out how to harness animal insulin for human use).

At Camp Ho, kids do all of the normal camp stuff like flag raising, camp songs, capture the flag, polar bear swims, nature hikes, and pulling pranks on other cabins, campers & counselors. At Camp Ho, there were also a few “special” things each session where the whole camp would leave the camp grounds and go for a long hike, or a long canoe trip, go roller skating, or go to a water park.

The only difference between Camp Ho and a regular summer camp was that in and among all of these normal camp activities, there was a lot of blood sugar testing, glucose tab eating to treat lows, and shot taking. But, at least when I was there, all of those “diabetic” type things were pretty second place to the actual having of FUN!

So, why was sending me to camp the best advice about diabetes my parents & I got? A few reasons:

1) Diabetes is hard work! For both the parents and the child! Sending your kid to camp for a few weeks gives the parents a break from the constant worry and vigilance of helping their child manage diabetes. It also gives the kid a break from constantly worrying about managing their own diabetes and how that would interfere with activities of daily living, because at camp, diabetes care is built right in to daily life.

2) Parents of diabetics are WAY overprotective. There, I said it! (Don’t be offended, I’m alive today and as healthy as I am because of overprotective parenting!) Diabetes camp is great for the kid, because parents of diabetic kids are SUPER overprotective. This is not a bad thing. They have to be. Kids are total morons sometimes, and their brains aren’t physically capable of reasoning about long-term consequences (seriously, those parts of your brain don’t finish forming until you’re in your early twenties!), so parents of diabetics are constantly saying “are you low?” “when was the last time you tested?” “did you take your insulin?” “what’s your blood sugar?” “go eat something!”, and the list goes on. At diabetes camp, the kids get a much needed break from that, and the parents get a break from having to say all those things!

3)Diabetic kids grow up way too fast. Any person who’s had a chronic illness of any kind since they were a kid (shout out to my super brave cousin, Mark!) knows that some amount of childhood is inherently lost. Diabetic kids often face near-death experiences when they are first diagnosed, and that can leave them feeling VERY different than the rest of their peer group. I remember going back to school after I was diagnosed, looking around at the other kids in my class, and thinking in my 11 year old brain, “None of the stupid things you guys are talking about matter! I almost died! Life matters! We could all die tomorrow!” And more stuff like that. It’s a lot for a little kid to deal with. Not to mention that the diabetic kid now has to be constantly responsible and vigilant about testing, eating and taking shots. Regular kid stuff and spontaneity go out the window. At camp, though, you don’t have to worry about all that stuff because there are staff members to worry about it all for you, and you can just concentrate on having FUN for once! And, the other kids have had to deal with a lot of the same shiz, so they know what it’s like, and you become instant friends.

4)Diabetic kids can be way too self conscious. It is hard having to be “different” when you are a kid. When you have diabetes, you do a lot of things differently than other kids. You can’t always eat what they eat, you sometimes have to take shots or medicine around your friends who think it’s creepy or gross, you sometimes have to eat before, during, or after gym class, just to name a few. It’s hard enough to go through adolescence just trying to fit in, let alone going through it with a big “diabetes” stamp on your forehead. It’s a big blow on the self-esteem, trust me. At diabetes camp, though, every other kid there is JUST LIKE YOU! It was probably the most freeing feeling I ever experienced as a kid. The barriers I would put up between myself & my friends at home, because I was too self conscious about having diabetes, weren’t there at all at diabetes camp and I developed some of the closest friendships I’d ever had as a child there. Also, it gave me a lot of self confidence to see the counselors (who were often Type 1 adults) living awesome, happy, successful lives. I would always get home from camp and feel much happier and much less self conscious for awhile.

I’m not sure if all kids who go to diabetes camp feel like this. Camp Ho Mita Koda was and still is a magical place. It was life changing for me, and I know it is life changing for the kids that attend it now. I suspect it is even a life changing place for staff members (Heather, you can chime in about this in the comments if you want!). This post could go on forever, because I have so many wonderful things to say about camp. I have so many friends whose names I’d like to mention here, and so many stories involving them all I’d like to recount, but there just isn’t space. Before I end, I would like to mention one very special person, who is close to EVERYone’s heart that is associated with Camp Ho, Rich Humphreys. Rich was the camp director for two decades, and inspired so many kids at camp to live life fully and with zeal! I will always remember him telling us to never let diabetes be an excuse not to do something you want to do, and I have tried to take that to heart!

So, all you current or future doctors out there, if you ever have to drop the “D-bomb” on a kid and their family, please make the second thing that comes out of your mouth “ . . . and send them to diabetes camp!”

Camp Ho is the only place that I want to be.

I love the open spaces, and the feeling that I’m free.

The fun I had and the friends I made, I will not forget,

And I can tell this summer’s gonna be the best one yet!

YOU can prevent diabetes! (sometimes.)

So far in this blog I’ve talked a lot about the recent CDC estimate that between 1 in 3 to 1 in 5 Americans will have diabetes by the year 2050, so it may seem like the world dominion of diabetes is imminent. Well, it doesn’t have to be! While there are certain types of diabetes you can do nothing to prevent (Type 1 and LADA), you CAN do something to decrease your Type 2 diabetes risk (which, let’s face it, is the type of diabetes the CDC predicts will take over the world by 2050).

Luckily, while diabetes is a complex disease that is complicated to manage, the steps you can take to decrease your risk are relatively SIMPLE! And there are only TWO STEPS!

Step 1: Get Moving!

In a federally funded study through the NIH, it was shown that people at high risk could prevent or delay the onset of Type 2 diabetes by losing 5-7% of their body weight. In the study they only had to do 30 minutes of physical activity 5 days a week! That’s really not that much physical activity, but it made a huge difference in their diabetes risk! I personally find getting more exercise difficult, but over the years as I've used exercise to help manage my Type 1 diabetes, I've learned that you don’t have to start out as a marathon runner! Just pick something you enjoy, like walking or dancing, and it won’t seem like such a chore.

Step 2: Eat Healthier!

In the same study, it was shown that combining increased physical activity while eating less fatty foods and decreasing calorie intake, prevented or delayed onset of diabetes. Sometimes eating healthier can be challenging, but a good way to start is to eat less junk (soda, ice cream, chips, etc.) watch your portion sizes, and eat more fruits, vegetables and whole grains.

Sometimes developing Type 2 diabetes is just in your genetic make-up, no matter what you do. But, a lot of people can prevent it by doing SIMPLE things like getting active and eating better food! And, even if you’re not at risk for Type 2 diabetes, it is just plain ole’ good sense to do those things anyway! My advice is to set some small, achievable goals for yourself, get some friends & family on board to support you, and have fun doing it! So, what are YOUR physical activity and healthy eating goals?

To read more about preventing Type 2 diabetes, check out this link.

Next Up: Diabetes Camp!

Famous People With Diabetes!

So, I’ve been writing a lot of serious posts about diabetes lately, so I thought I’d lighten the mood a little bit today! Today I’m posting about famous diabetics!

There are a TON of celebrities with diabetes out there! When I started to write this post, I knew of a few, but I am amazed to find out just how many there are! Here is brief list for you, with a few choice comments from me!

Musicians:

Crystal Bowersox (of recent American Idol Fame)

Nick Jonas (yes, I did go there.)

Miles Davis (I knew I had to have something else in common with Miles besides awesomeness!)

Ella Fitzgerald

Johnny Cash

Bret Michaels

Neil Young

Elliot Yamin

Elvis Presley

B.B. King

Jerry Garcia

Ghostface Killah (my personal favorite)

Entertainment:

Larry King

Jerry Lewis

Mary Tyler Moore (she was the first famous diabetic I ever knew about)

Carroll O’Connor (All in the Family=most brilliant sit-com EVER!)

Wilford Brimley (duh)

Carol Channing

Dick Clark

Sports:

Arthur Ashe

Ty Cobb

Jackie Robinson

Sugar Ray Robinson

(and a bunch of other MLB and NFL players whose names I don’t personally recognize, because I’m not a sports fan, but whom I’m sure are famous, nonetheless. )

Politicians:

Winnie Mandela

Nikita Kruschev

Marion Berry (not to be confused with marionberry)

Others:

Paul Cezzane

Ray Kroc (founder of McDonald’s . . . interesting)

Thomas Edison

Ernest Hemingway

Anne Rice

Sonia Sotomayor (Supreme Court Justice)

H.G. Wells

Laura Ingalls Wilder

Larry Miller (of Utah Jazz Ownership fame)

Anyway, I just wanted to say, we’re taking over the world! Mwa ha ha! (In all seriousness though, we literally are taking over the world, which is not a good thing. Remember my earlier post about how between 1 in 3 and 1 in 5 Americans will have diabetes by 2050 if we don’t do something about it? We need to take action! While it is fun to read a long list of famous diabetics, the goal is to see this list grow smaller and smaller! )

If you want to read more about famous diabetics I found a lot of these on this web-site at dLife. For a more extensive list and biographies of these individuals, go check it out!

Next Up: Diabetes Prevention! You CAN prevent diabetes . . . sometimes!

My Baby Has the Sugars!

As promised, here is a guest post by my sweet husband, Ben, on what it is like to be married to a person with diabetes!

My Baby has the Sugars!

So, I am sure that I am entirely unqualified to be writing anything about what it’s like to be married to a person with diabetes. I have now been married to Erin, my diabetic, for 1 year and I think that I personally have come a long way. For instance, when we first started dating, I had a hard time watching her give herself shots (I am somewhat of a squeamish person in terms of medical stuff). When she had a continuous glucose monitor it was a particularly trying time for my constitution. But now, I have no problems; though I haven’t experienced the pump yet.

For those unfamiliar with marrying someone with diabetes, there is short time to get used to the things that diabetes brings. Let me clarify; I made a fully informed decision (and might I add, the right decision) in asking Erin to marry me. It took some time to get used to finding test strips everywhere (I call my lunch pail, the fridge, my socks, my shoes, inside my clean shirts, etc. everywhere). Now I find it endearing; they are little reminders of my beautiful wife. I still don’t really understand why she gets annoyed every evening when she has to take her insulin (it’s not as though she hasn’t had to do the same thing every night for the last 17 years) or how she is constantly running out of test strips (didn’t she see she was running low the last time she tested?). You also have to kind of give up spontaneity, as her blood sugar can often determine what we can do for a while.

In all seriousness though, being married to Erin is the most inspiring thing that I have ever experienced. I have never met anyone more responsible than her. From an early age, she has had to perform the function that so many of us take for granted. And though she is not perfect, as no diabetic is, she is much better at it than I would ever be (I have a hard time sitting through a 1 hour church meeting without my ipod, I can’t even imagine the attention it takes to be a pancreas for 17 years). And I won’t even go into the strength of will it takes to wrangle with the pharmaceutical industry as she has had to do.

And finally a note to my diabetic: I know I can never understand what it’s like to be diabetic, but that doesn’t mean I don’t want to try. I have said many times that it’s not you that has diabetes, but us. I love you and will always sit up with you when you go low in the middle night.

I hope I am not being presumptuous in giving a small bit of advice to anyone with diabetes that reads this, but, I would urge you not to define yourself by your illness nor let others do so. You are a regular person that happens to have diabetes with people that love you and want the best for you. Your support community is second to none, and while you could use some breast cancer like exposure and fund-raising, there will always be those who are willing to help.

Benjamin

Husband of Person with Diabetes

Thanks Ben! You are the best Husband that a person with diabetes (or anyone, for that matter) could hope for! I feel bad for all the other diabetic wives out there who didn't get to be married to you!

Next Up: Famous PWDs! We're taking over the world! Mwa ha ha!

All About Insulin Pumps!

Okay, I realized I promised this post two days ago, but I had to designate a special post just for World Diabetes Day (which was yesterday). But, since it’s still National Diabetes Month, I’m still blogging about diabetes, so here is a post ALL ABOUT INSULIN PUMPS!

I looked around for a good definition or explanation of what exactly an insulin pump is, but I couldn’t find the perfect one, so I combined a bunch and created my own. An insulin pump is a portable insulin delivery device that delivers insulin to the person wearing it continuously and subcutaneously (basically, into the fat just underneath the skin). So, basically, an insulin pump infuses a small amount of rapid acting insulin into the wearer continuously throughout the entire day as opposed to shots which deliver more rapid acting or longer acting insulin in one big fell swoop several times during the day.

HOW PUMPS WORK

Many people think that insulin pumps basically govern themselves and that if you pump, you don’t have to check your blood sugar or do anything to manage your diabetes any more. THIS IS UNTRUE. Pumps aren’t smart. They’re not even as smart as your “smart phones” and definitely not as smart as Google and it’s ability to anticipate what I want to search for. Right now pumps can’t anticipate what I’m about to do, or what I’m about to eat and adjust my insulin dosage accordingly. You have to program the pump to do what you want to do, and the programming functions are pretty basic.

There are two basic things you have to program your pump to do. First, you have to figure out your basal (or base-line) insulin needs. This means, how much insulin you need during a given period to handle your body’s basic metabolic functions, without taking into consideration eating. Then, you can program your pump to deliver a certain amount of insulin, over a certain amount of time for that given period. You can vary that a lot, which is nice. So, for example, I can program a pump to give me 1.5 units of insulin every hour between the hours of 12am-6am, then 1.0 units every hour between the hours of 6am to 1230pm, then I can say, between the hours of 1230pm -600pm give me 1.5 units every hour, etc. These are called the pumps’ basal rates. You can make these pretty variable, and you can have as many different basal rates as you need, at whatever rate and time you need them, but you still have to program it to do it. And you have to somehow figure out how much you need at what hours of the day (which, believe me, is not easy to do, as your body’s basal insulin needs change often and that’s a whole other blog post in itself!).

The second basic thing you program a pump to do is to give you a bolus. This is insulin delivery that is given to cover food you have eaten or to correct a high blood glucose. You have to figure out how much insulin you need based on the amount of food you eat and also how much insulin you need to lower a high blood sugar to your target range. This takes a lot of trial and error, and a lot of blood sugar testing. But you end up with an “insulin to carbohydrate” ratio, and a “correction ratio” which you then use to program your pump to deliver a bolus when you need it. The pump won’t just be able to tell when you are eating or when you are high and say “Oh! Erin needs insulin! Here you go!” Like I said, they’re not that smart yet. There are lots of different kinds of boluses that basically differ on the rate at which the insulin is delivered. But, in general, a bolus is insulin delivery given to cover your body’s insulin needs over and above that needed for basic metabolic function.

Other than those two basic things your insulin pump does, you can also program it to adjust your basal or bolus rates when you exercise, when you’re going to take it off for a bit, or for any other activity that might change your insulin requirements. For example, I know that when I get anxious, my blood sugar sky rockets. So, if I’m about to do something like speak in front of a big group of people, I’d probably give my self a little bit of a higher temporary basal rate to help me keep my blood sugar down.

If you have any more questions about that, or if I didn’t do a very good job at explaining how they work, this wikipedia article actually does a decent job at explaining it.

ADVANTAGES TO PUMP THERAPY

There are many advantages to using an insulin pump over regular Multiple Daily Injection (MDI) therapy (taking shots). Pumps more closely mimic the natural human pancreas, by delivering a little bit of insulin all day long to your body, rather than insulin in short bursts like MDI. Because you are only taking rapid acting insulin, you can make finer adjustments for unexpected life events, because you don’t have to wait on the long acting insulin you took 12 hours ago to get out of your system. When I was on a pump, I felt like I had a lot more freedom to eat and exercise when I wanted without a lot of planning ahead. It is easier to achieve better glucose control on a pump (although arguably just as much, if not more, work) than on MDI.

DISADVANTAGES TO PUMP THERAPY

In my opinion, the number one disadvantage to pumping is the price! It is still VERY costly, and virtually impossible to have one if you don’t have good insurance coverage for it. And, like everything, many insurance companies will fight you tooth and nail to let you have one. Another big disadvantage of pumping is constantly being attached to something. It can be difficult to find clothes to wear that cover your pump, especially if you’re a woman. Also, not all pumps are water resistant, so it is hard to just hop in the pool or shower. Also, if you’re not careful with rotating your insertion sites, you can develop scar tissue (but that’s also possible with MDI).

TYPES OF INSULIN PUMPS

There are many different kinds of insulin pumps, but basically they all consist of the pump itself, a reservoir that holds the insulin, a cannula (the part that sits under your skin that the insulin comes out of) and some kind of tubing that connects the insulin reservoir to the cannula. There are some “tubeless” pumps out there now, too. Most people wear a pump on their belt or in their pocket and then the tube stretches to wherever their insertion site is. Those that have the tubeless pumps basically just wear the pump right at the insertion site.

(Image borrowed from tudiabetes.org)

These days, insulin pumps are about the size of a beeper or a cell phone. When insulin pumps were first being developed, though, they were HUGE and basically had to be worn like a back pack! NOT very practical! I’m hoping that pump manufacturers will start to take their cues from places like Apple, Inc. and develop smaller, sleeker pumps, soon. Here are links to some of the major pump manufacturers, at least in the U.S., so you can get an idea of what they look like. (I am not endorsing any of these manufacturers, by the way).

• Animas
• Medtronic Minimed
• OmniPod (tubeless)
  

Next Up: What is it like to be married to a PWD?!—A guest post from my husband!