T1 Diabetes

For those of you with immune systems that hate Islets of Langerhans, a special welcome. Over the last few years it has been my pleasure to meet many athletes who discovered running through a health crisis. I am one of you. I developed T1 diabetes in May of 2008 at the rather advanced age of 35. I turned to running in an attempt to better control my blood sugar. And aside from several running related injuries, I have been rather successful. 

I was diagnosed with an HbA1c of 6.2 (an a1c is a percentage of the glucose molecules on your red blood cells. A human's red blood cells live for about 3 months and are then replaced. Measuring the glucose percentage provides a pretty good indicator of your average BS over those 3 months). Since that time I have kept my average below 5.5 using several strategies. You have most likely been told anything under 6.5 is great. God forbid, you have a Luddite for a doctor or the ADA's below 7.0 recommendation. With a little information and exercising a little will you can lower your current percentage. Good luck.

Frequently I meet someone with questions about my experience with diabetes. Many times those meetings are brief and I find myself unable to fully communicate what I have learned in my battle with this chronic disease. For those situations, my objective is to construct a place to share some of the knowledge and prejudices I have picked up over the last few years.  I will try to keep this an evolving page and add to it over time. Essential resources are listed further down. You can skip my opinions and live a long and healthy life, but check out the resources. They are cheep or free.

So you have diabetes. Below is a list I wish could have been given to me upon my diagnosis. First, I am not a doctor nor do I work in the medical community. Everything in this blog represents only my opinion and experiences. I am not offering medical advice. Which is good, because many doctors and the medical community in general will kill you, mostly on accident.

1. The medical establishment will kill you. They will systematically treat you long term with opinions developed in the 1980s or using a 20 sided dice and Milton Bradley's Operation board game as your kidneys, eyes, circulatory system, happy parts, and nerve endings fail. In the US most doctors see you as too dumb to be fully informed of your condition and responsibilities. The relationship of doctor as omniscient, patient as meat works well in a lot of finite scenarios. Say a broken leg. However, diabetes must be managed minute by minute for the rest of your life. You will be encouraged to see a doctor 4 times per year. Much better to seek an opinion from an engineer or a city planner.

2. You are your only advocate. You must manage your diabetes alone. Forever. Like the self-represented lawyer, you also now have a fool for a client. If you are dependent on your doctor to adjust your insulin ratios, your basal usage, your diet, or exercise you are in serious trouble. And now the good news. All the information you need to become an expert at diabetes management is freely available through publications, forums, and the internet. Get an honorary doctorate through self study. You will know more than your doctor in less than 2 weeks. You will never know more than your mother.

3. People will try to sell you crap that is either useless or counterproductive.  Glucerna bars I am talking to you. Sugar free products full of corn starch or other carbohydrates are not going to help. Cinamon will not save you. Supplements are useless. You will be eating diabetic cereal (DO NOT EAT CEREAL), wearing diabetic socks, and taking diabetic vitamins within 4 minutes of diagnosis. And you will pay through the nose for all of these products. Do not wear, ingest, or medicate with anything you do not understand. Do your own research.

4. Chart everything. Everyone's diabetes is unique. Get your hands on as many blood sugar testing strips legally available. Tell your doctor to write you a script for as many as your insurance will allow. If you have no insurance the cheapest option I have found is the Reli-on meter from Wal-mart. As I write this the meter is about $10 the strips are near .36 per usage if you buy the 100 pack. I use this set up for my needs above my insurance allotment and for adventure type activities when I don't want to kill my primary meter with cold, water, or a hard fall. Check Canadian pharmacies online. Be careful with Ebay or Craigslist, you want to make sure they are not 3 years expired, stolen, or painted Popsicle sticks. Even with insurance, or using the cheaper options, BS meters (more specifically their strips) may be your largest expense. They may eclipse your insulin cost. They are worth it. Use them as a tool to learn your bodies trends. I charted every carbohydrate I ate, exercise performed and its length, every insulin injection in Units, and every blood sugar taken for 6 months. I am still using that data in my everyday decisions. I do a 2 week spot check about every 1/2 year or when I have a diabetic related change (exercise volume, diet change, stress increase, etc.) This compiled data is the most valuable resource you have and it is as close to an absolute you will ever achieve with D. Through testing I know that with an average fat content meal (more fat slows down digestion, results in a later peak) with less than 35 carbohydrates my postprandial (after meal) blood sugar peak occurs near 90 minutes. With this information I can test before my meal, make my insulin decision, eat and know with relative certainty if I test again between 90 minutes and 2 hours the number I see is most likely down trending. When I am not charting, I read upon wake up, 2 hours after breakfast, before lunch, 90 minutes after lunch, before dinner, 2 hours after dinner, before a night snack and before bed. Those 8 readings, IMO, are the ablsoulute minimum required for a T1. An unexpected low can easily chew up 2-3 more, and exercise over an hour usually cost me 2 more. I average about 11 strips per day. That comes to about $5.50 per day if you are providing all of your own strips. Congratulations you now have a habit about as expensive as smoking a pack per day. I try to think of it as future avoided co-pays and deductables. The University of Maryland suggest, The cost of kidney dialysis averages about $44,000 per year per patient, using 1993 figures. Don't even run the numbers on a heart attack.

5. Get Insurance. Diabetes is expensive. I pay around $3500 per year out of pocket in additon to insurance premiums and I have fair to good coverage. Get a new job with benefits, move to Britain or Canada, or marry someone with great coverage. Without the right tools this disease can kill you. And many of the tools require scripts which make them expensive. Today's insulins are mainly Recombinant DNA manufactufactured by molecular cloning. They are expensive and they will not lose their patent protection in you lifetime.

6. Get Fit. Get fit like the zombie apocalypse is tentatively scheduled for Tuesday, 3 weeks from now. Any ailment you have will be credited to your condition. This assumption could deny you health care. It could kill you. You may not qualify as healthy enough for a procedure or a surgery. You have to be preemptively fit to deflect any prejudice. Be thinner than your doctor, have more endurance than the nurses, out dead lift your insurance provider. I recently undertook a peroneal longitudinal tear repair I suffered from an ankle roll while trail running. My diabetic status threatened to postpone the procedure. I had to be evaluated in person by the hospital before I could be cut in their facilities. This is after a complete review by my surgeon. And yes, one of the surgical team members asked if it was a diabetic complication. Diabetes has been known to cause baldness and shin splints. Besides counting the T2's there are almost more of us than those without insulin challenges. If we are all fit we will win the upcoming endocrine war.

7. Everyone Will Backseat Drive for You. Nobody knows your body like every other person on earth. Family and friends will offer you the latest diabetic advances observed from respected medical journals such as Cosmopolitan and Reader's Digest. Your co-workers will bring you special sugar free Italian bread and fat free spaghetti jellos, when not offering you the toxic processed birthday cakes everyone else is eating. You will hear, "you deserve it" or "you can try just a little" from the same people who advise you to avoid corn, peas or apples because they are bad for diabetics. These people are idiots and their opinions are asinine. Even your family members and friends. But that is fine. You don't have to love them any less. I am sure you are an idiot and most of your opinions are uninformed and asinine too. I know mine are, the older I get the more baseless assumptions I adopt. Look at this blog. Its human. Its how we are able to vote. You have to try to take this advice for what it is: Someone's attempt to show they care for you. Their intention is great, its just the information that is suspect. Ever buy a gift for a child? You had great intentions and 2 dollars and a doughnut says they hated it. And just to confirm this rule, they will occasionally drop the exception on you with a real gem of knowledge. Some of the best information I have adopted has come from my non-D wife. She found that economic smarties and sweet tarts treat a low as effectively as the very expensive glucose tabs from the drug store. Try buying them the day after Halloween or Valentines Day. This is the same woman who believed that drinking a lot of water would dilute your blood and bring down a high. The point is, apply the same rigorous questioning to the information you gain from others that you do toward facts you pick up from internet blogs.

8. Don't be a walking zombie. You definitely want your a1c to be low, but remember its an average. Watch your standard deviation. If you run a 40 blood sugar 12 hours a day and a 220 for the rest of the day your average 130 BS average will translate roughly to a 5.9 A1c. Not too shabby, but those 12 hours a day over 220 are highly damaging your body. The 40s are doing you no good either. When first diagnosed, I ran too low for awhile in an attempt to avoid highs. I was tired, forgetful, and definitely not at my best. A lot of the latest literature suggests frequent lows can cause long term problems too. (This is a great place to verify the information you absorb. Go look it up. If their is a picture of doctor Nick on the verifying website its most likely legit.) What you want is the lowest A1c you can maintain while maintaining a low standard deviation.

9. Try Low Carb. I think its a toss up between exercise and low carb for the 1 best thing you can do to control your blood sugar. Atkins is good for learning new recipes and concepts. Fat does not affect your blood sugar at all. Protein kind of does over time, but for all intents and purposes not really. Carbohydrates will raise your blood sugar. My BS rises about 4.75 points per carb. Find the lowest amount of carbohydrate you can live with and then live with it. Dr. Bernstein lives on 30 a day. To me that is as saintly as it is unattainable. The USDA indicates that up to 65% of your daily intake can be carbs. For a 2300 calorie diet that is just shy of 375 carbs per day. Way too many in my opinion. The average American consumes over 600 (I just made that up.) Remember that insulin acts as an inflammatory agent to your body. The more carbs the more insulin you require. Just try it for a week while recording your numbers.  

10. Don't be so judgmental. I just glanced through my previous 9 points. I sound like a politician with my certitude that everything I say is the only right way.   Everyone reacts differently. You are a beautiful unique snowflake. Your millage may vary. Do what works for you. The above has helped me.

Essential books

Dr. Bernstein's Diabetes Solution A must read, but if you can follow the diet section you are a true masochist, in danger of sudden rapture by the diabetic gods. It contains all of the components you need to create a successful informed attack. Great arguments for low carb and rapid insulin lifespan. See how a T1 engineer turned doctor approaches treatment.

Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin Gary Scheiner M.S. Anyone new to insulin (and a lot of veterans) need this book. 

Using Insulin: Everything You Need for Success with Insulin John, D.B.A. Walsh, Ruth Roberts, Chandrasekhar Varma. The workbook on any diabetic syllabus. Simplifies the math, outlines the concepts. Buy this after your medical provider sends you to your first useless CDE (certified diabetic educator) class. 

Pumping Insulin: Everything You Need for Success on a Smart Insulin Pump John, D.B.A. Walsh (Author), Ruth Roberts. Same main authors as above. You can get by with one or the other, but I tend to hop from pump to needled to pens and back. If you are only pumping this is your book. Buy it before you buy a pump, unless you already have one. Great worksheets to fine tune basel. 

Essential websites

Diabetesdaily Great resources, great people, great support system. I got my diabetic feet under me by living on this website for 6 months. The forums are great. Its free. You won't get spammed. I have not been on for a long time, but still check in from time to time. My user name is ovenphone. On the down side it can get preachy. When someone finds what works for them they think it must be THE way. I am definitely guilty. Some threads turn into a taste great vs. less filling beer commercial.

TuDiabetes Another great resource. Forums. Equal to DD above.

Blood Sugar 101 Jenny Ruhl rules. A T2 with links to any study you might be interested in. Very scientific. Don't disregard this site if you are a T1. Physiology is very well explained. This could be in the book section too. I bought her book because its safer in the bathtub than your laptop or mobile device.

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