Prepping with Type 1 Diabetes

Type 1 diabetes — also called Juvenile Diabetes — shook our prepping plans to their foundations. While I was stockpiling food, learning to make cheese, and writing the occasional post for the Survival Mom, my 9 year-old daughter’s body was attacking itself and she was diagnosed with Type 1 Diabetes.

Just a short time later I found myself trying to find answers for prepping with Type 1 Diabetes.

A T1D diagnosis is a life sentence of finger pokes and insulin administration. And because it’s genetic, we now know our other children are at risk.

What’s a survival mom to do? I didn’t even wait for the shock to wear off before I took to the internet seeking advice from the preparedness community…and was extremely disappointed with the meager information available. (I’ve included the links to those I found even a little bit helpful to save you time.) Even expert Mormon preppers who have so much information and resources had little to offer.

NOTE: This post is specific to Type 1 Diabetes, NOT Type 2. Please keep the differences in mind when you post comments and suggestions. Finding ways to prepare for a serious disease like this is scary. Suggestions that simple adjustments, like changing the food we have stored, as if we wouldn’t have already done that if it would resolve the issue, are more hurtful than helpful.

*Disclaimer: I am not a doctor, attorney, engineer, moralist, spiritual adviser, survivalist, or millionaire. Use the attached links and their information at your own risk. I’ve simply put together what’s on the internet and what I’ve personally experienced. The rest is up to you.

Some Background

For clarity’s sake, please understand that T1D is very different from Type 2 Diabetes. The bodies of Type 2 patients still make insulin, but their bodies have trouble using it to get carbohydrate energy from the blood into the cells for use. Diet, exercise, and some drugs can help them do that.

NONE OF THAT HELPS TYPE 1 PATIENTS.

The body of a Type 1 patient makes no insulin, the vehicle that unlocks cells so that energy can enter and be metabolized. The immune system has attacked the pancreas and shut down the good guys that make insulin. No diet, exercise, or drugs on the market will turn those cells on again. And that was my initial frustration.

Lots of good-hearted folks had tips for keeping blood sugar down, but those suggestions will lead to starvation and/or death for a kid who can’t get energy from any type of food. Remember Atkins and low-carb diets? It’s the same idea. When the body can’t get energy from carbohydrates, it burns the body’s fat reserves. When that’s depleted, the body uses muscle for energy. A kid who eats bowls and bowls of pasta but can’t use any of its energy will still burn fat and muscles until there’s nothing left. Having supplies and insulin at all times is essential to survival.

Getting Started: Short-term Emergency Preparedness

The Juvenile Diabetes Research Foundation in 2013 advised diabetics to keep a filled medical bag after Superstorm Sandy hit in October 2012. Doctors were concerned that, gasp!, some of their diabetic patients weren’t prepared to go a couple of weeks without visiting a regular pharmacy! One woman didn’t have a regular pharmacy for 5 months following Sandy.

Put together a supply bag

A bag that holds basic supplies for the diabetic is a smart first-step. The JDRF checklist might be helpful in packing that first bag. After some experimentation, I keep a tiny first aid box filled with pen needles in our everyday carry bag. And while you’re in the travel aisle, grab a tiny pill holder with a screw-on lid for sharps disposal. Mine can hold 3 used pen needles, enough to dose for each meal without worrying where to put used needles.

Carry snacks for emergencies

We keep a high-sugar snack for emergencies, as well as no-carb snacks that can curb hunger in the everyday carry bag. A case of water bottles in the trunk makes sense, too, as diabetics need to drink continuously. We keep even more snacks in a lunch bag in the car, along with 5 more days’ of supplies in case we wind up stranded somewhere.

Stocking up on Insulin and supplies

The problem with stocking up on diabetic supplies  is that they are expensive and insurance companies make it difficult to buy more than is needed for a short period of time. As with most prescriptions, many insurance companies will only pay for 1-3 months of refills at a time, and will only allow refills once supplies dwindle to a few days’ worth of reserves. That’s cutting it way too close for this prepared mama. If you’re new to diabetes or to prepping and have been worried about this, take heart. I’ve done some of the legwork for you.

Most states require a prescription to purchase insulin, making stockpiling trickier for Americans. It may be possible to buy insulin from other countries, and you may have wondered about the legality of buying insulin from Canada if you are an American. Since there is recent legislation on the table to make it legal for US citizens, this is good information to keep in mind if it does become legal in the future.

Another way to add to your stash of insulin may work if your loved one uses a pump but is very active. With a doctor’s approval, they might consider switching to a pen for at least part of the year. Some high school wrestlers with T1D are on a pump most of the year but switch to insulin injection pens during wrestling season for safety. Because there’s some overlap in refills, they will end up with a few extra pens tucked away as backup. Switching to pens for the summer might make sense if your self-conscious preteen is swimming, boating, canoeing, and cruising the pool. It might even be necessary if their pump can’t be immersed and they will be around water for longer than they can go without it.

How much insulin should you store? From my experience with food storage, I recommend you use the same guidelines as you would for food. If your canned tomatoes keep for a year, store a year’s worth and rotate. Refrigerated insulin will keep for up to two years, or 30 days once opened and kept at room temperature.

While it is prudent to follow the “store what you use and use what you store” philosophy, pump users might want to skip down to the “Grid-down” section before putting all their insulin “eggs” in the “pump supplies” basket. Either way, request that all your prescription supplies automatically refill as soon as your insurance company will allow. If you can choose a couple of days a week to reduce carb intake and thus reduce insulin use, autofill can eventually get you a little bit of cushion.

Stocking up on Testing Supplies

Stocking up on diabetes testing supplies is easy, compared to stockpiling insulin.

It is simple to buy diabetes test strips, pen needles, etc. from Canada at a fraction of the cost. Price check all your options to get the lowest combined price, and be sure to take shipping into consideration. Remember to check eBay and Amazon as well. We found both to be only slightly less expensive than the pharmacy, but you can luck into great deals on eBay.

Diabetic specialty websites like Glucomart carry hit-or-miss supplies and run daily updates. You have to check back pretty often, or use your email address to request notification when the products you need are in stock.

Testing on-the-go is much easier with alcohol swabs. I pick up a 2-pack (400 total) for less than $4 every time I go to the store. Even in bulk, I can’t find them cheaper than at Walmart. At home, we use a giant bottle of alcohol and cotton balls, available at dollar stores everywhere.

While I personally haven’t tried it, you may also be able to find unopened testing supplies at an estate sale, just as you might find other non-prescription medical supplies such bed pans, surgical gloves, or dressings. In estate sales, you might even find a new or lightly-used testing machine to go along with the supplies.

With second-hand supplies in particular (estate sales and eBay), be certain to check the expiration date, and (obviously) that they are compatible with your machine. They may be cheap because they are close to their expiration date. Use those right away and save the ones with later expiration dates.

I’ve created a spreadsheet to help me keep track of our supplies, their expiration dates, and how much of each I need to stock up on in order to be prepared for 3 months, 6 months, and one year.

Stocking up on Other Essentials

Vitamins

Immune support is crucial for T1D patients. In fact, contracting a common cold or flu virus is often what pushes an overactive immune system into overdrive and coincides with T1D onset. Endocrine changes due to illness wreak havoc on blood glucose levels. Avoid sickness and support immunity whenever possible.

Vitamin D is also shown to assist with glucose control. It’s equally important for our other children to get vitamin D, as a deficiency is linked to increased risk of developing the disease for those with family history.

Low-carb alternatives

In an emergency, you may want to reduce carbohydrate intake to make insulin stockpiles last longer. Our medical team says kids need a MINIMUM of 130 carbs per day for growth and development. Basing insulin stockpiles on current needs should give you some wiggle room.

Maybe now is the time to learn to cook with almond flour or develop a taste for coconut milk. (Both are shelf-stable, by the way!) We already had a HUGE stockpile of beans, rice, noodles, and other starchy foods that could be a nightmare for glucose control. Energy rich, but nutrient sparse.

We still have and use those foods, but we’re replacing some of them with alternatives that make sugar control a little easier. Brown rice has a shorter shelf life, but more nutrients and the complex carbs are much slower to enter the blood. Similarly, a packet of Splenda or Stevia might make lots of ho-hum dishes more palatable, the way sugar does for the rest of us.

As a replacement for milk, Peak powdered milk  has 8 carbs per cup, versus 12 for regular powdered milk and fresh 2% milk. LC milk powder has only 1 carb per cup, but it requires mixing with water and heavy cream. Canned coconut cream doesn’t work, as the consistency is too solid. Table cream yields a better result.

Rationing diabetic supplies

Lancets

I’ve read comments from diabetics who still change a lancet after every finger prick, and from those who guesstimate it gets changed every couple of months. I was not able to find a link to specific guidelines, but the American Association of Diabetes Educators acknowledges that reusable lancets for a single patient are completely safe. The recommendation at the time of your initial diagnosis may have changed. Our medical team insisted a once-a-day change had been studied and was proven safe, provided the skin is cleansed with alcohol before each finger prick (as of December of 2014).

Pen needles or syringes

This scares the heck out of me. The Journal of the American Medical Association indicates that it would be okay to reuse syringes or pen needles without complications. I don’t think I’d do it in normal times, but in dire circumstances it’s nice to know about the AMA’s approval. The article specifically talks about 3-4 uses per needle, which would equal a once-a-day change.

Off-Grid Considerations

Loss of electricity could prevent recharging your meter. Any number of solar phone chargers with USB plugs can be used as a backup option. Plus, you’ll have it to charge your phone!

When stockpiling, strongly consider the possibility that electronic equipment may fail due to a natural or man-made EMP event. Pump users should consider stocking insulin pens for backup, as an EMP could fry the pump’s circuitry. Pens are not vulnerable to EMP. We purchased an identical meter (half price on eBay!) and stashed it, unopened, in a Faraday cage as a backup.

If monitors are inoperable despite all these preparations, another backup option exists, urine test strips for glucose. They are less accurate than blood glucose meters since it takes much more sugar to register on a urine strip. These were used in the U.S. through the 1970s and 1980s, we just don’t have much of a market for them here anymore.

However, patients in third world countries without electricity use them, so they could be a viable alternative in a grid-down emergency. We plan to periodically compare the urine test results to the meter reading just to see how they compare.

Refrigerating insulin is key to prolonging its shelf life. Consider a solar refrigerator, or build a solar panel strong enough to run a small, dorm-room-size refrigerator.

The Frio Insulin Cooling Case is a water activated product designed to keep insulin cool during travel that has been getting some attention on the web. I haven’t tried it yet, but may post an update. With exposure to air, the bag keeps insulin room temperature, which is much better than hot, but it doesn’t even come close to refrigeration temperature.

Another option is a refrigerator that runs on 12 volt (as well as 110), apparently designed for campers and long-haul truckers. Since they can run off of car batteries, you just need to add a few extra car batteries to your preps – hardly an exotic item! If you make sure they are the kind your family cars need, you are even prepared for one more every-day disaster. If you have other ideas, I hope you’ll add a comment below.

In a grid-down scenario, Dr. Bones of “Doom and Bloom” fame gives some options for preventing ketoacidosis here.  If you’ve stockpiled enough supplies, you shouldn’t have to worry about that for a long while.

First Steps

If you’re new to prepping or T1D, I know this is really overwhelming. Take some deep breaths and then some baby steps. Figure out what your child or grandchild needs to get through a single day, calculate, and start. Just, start. Don’t worry that you are starting with “the wrong thing.” You will need it all, eventually.

A good initial goal is to have a 3-month supply of EVERYTHING, but if that is overwhelming, you can start even smaller. Get the testing supplies since they are relatively easy, or one extra week or month of insulin. Research some backup options and get those next. But start…somewhere. Anywhere! Don’t let yourself get paralyzed to the point that you do nothing.

Once you have a 3 month supply, move on to a 6-month supply. When that is done, consider how you’ll maximize your insulin without electricity. Then keep adding to your supply. And don’t forget to rotate!

Final Thoughts

I KNOW prepping for Type 1 Diabetes is expensive because I share your pain in paying for it. I know building a stockpile probably means buying supplies outright without help from your insurance company—probably while you’re still paying off that hospital bill from the initial diagnosis. Trust me, I know it’s overwhelming.

Normally I would say to do what you can as you are able to do it. But for your diabetic loved one, this is truly a life-or-death proposition. A 5-year supply of food does your loved one no good when his 4-week insulin supply runs out. So in this situation, I say do what you have to do. Tap into your savings account. Sell some of your silver stash. If I had to, I’d consider allowing myself a little credit card debt.

I can’t think of any earthly consideration more important than the welfare of my children. They rely on me, and now I have a T1D kiddo who relies on insulin, meters, lancets, and test strips for SURVIVAL. I refuse to let her down.