The exhaustion of chronic illness, or when bad things happen to good people

I’ve generally been a “good” person. I try to do those ten things on Dalai Lama’s list. You know, be kind, not hurt others, let people know you love them, hear a tree when it’s falling even it you’re not there. In addition, there are my hard-wired Virgoan traits: I’m responsible, loyal, a good friend and hard worker. 

When I got diabetes at 18, after the “Why me?” stage passed, and the denial stage passed, I got back up on my feet and learned to manage this damn illness. Not that it was easy or simple, but it’s happened over days and weeks, months and years. I changed some behaviors, like eating smaller portions and more recently practically vacuumed carbs out of my diet. I’ve made walking a daily ritual and caught up on the newest insulins that have made this so much easier to manage. I do well enough that these past few years my A1cs are consistently in the 5s, and my routine is integrated, quite well, into my life. Amend that, my routine is my life, but I don’t mind, it works for me.

So here’s the thing: even with all this hard work, commitment, dedication and do-goodedness, every once in a while there’s a bump in the road. And I resent the hell out of it. “I’ve been good,” I’m screaming inside. “How can you do this to me!” “Is this how you repay me!? I don’t deserve this!!!” Don’t ask me who I’m talking to, some great Kahuna out there.

I am totally brought up short when something bad happens due to my diabetes. And something seems to happen every few years. Once again I have to face and deal with the fact that I don’t know what’s coming around the corner no matter what I do. And, I resent that the road I’ve worked so hard to make so smooth, has potholes underneath. 

Getting a second frozen shoulder six years ago, the year I was getting married, that required surgery and a three day hospital stay, was a pothole. Discovering, after 32 years of annual eye exams, with my eye doctor always astonished at the health of my eyes, that I have a slow-growing cataract, deflated me. Getting an official diagnosis a day before I left for Europe a few years ago, that I’d lost 25% of my hearing, devastated me. That wasn’t a pothole, so much as a crater. And I cried and cried in the Amsterdam train depot while telling my husband. It’s not widely written about, but hearing loss is associated with diabetes just like vision problems. The small blood vessels in the ear canal are just as susceptible to damage as those behind your eyes. O.K, buck up I said to myself looking around at all these tall blonde people eating herring. Life goes on. I’ll go on. And I righted myself and continued my march valiantly forward.

Last week another pothole opened. Oddly this one’s not due to a complication of diabetes. No, this one’s from trying to make my diabetes better. After so many years of taking injections, I, like most, have developed a significant amount of scar tissue where I inject. Shots now hurt somewhat, and I take between 4 and 7 injections a day to keep tight control. Last year I’d heard of a device called iportand when I saw it recently, I decided to try it. It’s a small, round plastic disc and like a pump, it has a little plastic tube that sits inside you through which to deliver insulin. Unlike a pump, it’s not attached to an insulin cartridge, so you stick your syringe through it’s little rubber stopper, plunge, and the insulin goes through the little plastic tube and into your body. So now, instead of feeling the prick of 12 to 21 shots in three days, I only feel one prick, when I insert the iport. Hallalujah, I thought the first day. The iport didn’t hurt going in, although I’d been told it could, (an inserter is planned to be on the market early next year) and I barely noticed I was wearing it all three days. Wow, I told my husband, I kind of feel proud. When he looked at me quizzically, I said,  “Well, I’m an early adopter. I’m doing something pro-active for myself, taking a new step.” Then I discovered I spoke too soon.

The second iport I put in hurt. When the insulin didn’t leak out I dismissed the first reason it might hurt, that there was a crimp in the plastic tube. Yet, that spot where the iport tube sat inside me felt sore over the entire three days. My initial feverous joy of being free from injections and pain burst into a million little pieces. I caved; this pothole turned into a crater. I held back tears for the final two days of wearing it. 

After 35 years of living with diabetes, trying to make the daily tasks, which I’ve accepted and perform (because I’m a good person) religiously, a little easier, that scar tissue that’s built up over those decades of injections conspired with the iport to hurt and humiliate me. (Yes, I could have removed it, but I’m good, you remember, responsible, committed) So, now, if I have 30 years of scar tissue, mostly in the same place, my abdomen, which is where I’d likely stick this thing so I can see and reach the little rubber stopper to inject, how can I benefit from this new device that could be really helpful? I’m pissed. But more than pissed, deeper than pissed, I feel penalized, tricked, cheated, saddened and maddened. I feel utterly betrayed, disappointed, and sorry for myself for all those years I’ve been so diligent taking my injections. Of course, this isn’t rational thinking, but what emotional tornado is? Why do bad things happen when I’m being so good?  

I told a friend who’s used iport now for almost a year, and who has mentored me through this, “You know, P…., I realize I’m just exhausted. This experience has taken so much of my energy: to get the iports, worry through the insurance procedure, gear up for a possibly painful insertion, contact the company twice when a rep never called me, to have to now track when to insert and remove the iport, to watch for tube crimping and see that my insulin really gets in, to wonder where everything I wear will fall against it.” Of course, I think this is about my being exhausted in the larger sense: from all these days upon days of ordering and keeping track of all my supplies, remembering to change my lancets and syringes, the daily food, exercise and insulin calculations, we could go on forever. What also dawned on me was that this experience killed my hope; that I could have made something better for myself, something easier and less painful with this disease. And I deserve my hope because I’ve waded through the river with diabetes for so long, and stayed afloat. And I deserve this device to work for me because I’m a good person.

Five days later I learned something else. When I began this piece I was thick in the middle of this emotional storm. Now it has passed. I have a new iport on. It didn’t hurt going in, I don’t feel it now, and I’m enjoying the freedom it gives me from painful injections. I learned, for the umpteenth time, that everything changes — problems, circumstances, feelings, thoughts. You just have to ride it out, whatever it is, and know it too will change. And while bad things happen to good people, I have my hope back that more good things happen than bad.

Confessions of a 35-year diabetic

Times change, and we learn a thing or two. (Driver, my dad)

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I’ve been doing a lot of flying lately. A few weeks ago I flew to the Children with Diabetes conference in Orlando. I just flew back from Tucson. While aloft a few days ago in JetBlue’s comfy seat, I took out my syringe and Humalog to dose for my snack and realized how many things I no longer do that I was once taught to do. Conversely, I thought about how many essentials I’ve learned, through either personal experience or fellow diabetics.

I don’t use alcohol swabs before injecting. I stopped that in 1986 when I moved to Tokyo for six years. At my new Japanese company clinic, the nurse, who appeared to have never seen a diabetic before, handed me a jug-size bottle of alcohol and a suitcase-size bag of fluffy cotton balls. The type that shred and stick to everything. As she handed them to me in a brown paper bag, we both shared a look of dismay. That was the day I stopped using alcohol before an injection. (I later read from an official diabetes source that it is not advisable to use alcohol swabs because they dry out your skin.) 

I don’t use cooling packs for my insulin. Maybe if I were going into the Ecuadorian jungle for two weeks I’d need them, but my usual jaunts always seem to have a refrigerator at the end, and moderate enough temperatures. As for insulin overheating in the car, I don’t have a car. 

I don’t have special compartmentalized bags for my supplies. My syringes get disbursed throughout everything I wear and carry. A few in my pocket, purse and zipper linings. When traveling, my insulin goes in my fanny pack or purse. Right now, I’m trying out the new UltraMini meter from OneTouch. It straps right onto my fanny pack, and I can fit it in my purse. I just don’t see the need to take a big carry-all. 

I don’t use new lancets each time I finger test or a new syringe each time I inject. Really, does anyone? I know the points on these instruments become dull over time and can be tough on your skin. But I must have magic fingers. They heal immediately after being punctured. Maybe I’m just this side of a Clint Eastwood character, hanging tough. I change lancets and syringes when I pay my monthly maintenance or when I notice my pain threshold lowering. 

I don’t check my feet or in between my toes every time I see them. Stepping on assorted items, crumbs in my house, fallen acorns around someone’s pool or that damn pen I couldn’t find, reminds me that my feet are fine and feel every sensation. (If you have neuropathy in your feet, ignore this advice!!!). 

I do not advocate you do what I do, necessarily. We must all be responsible to our own bodies and needs. I am only making the point that many of the things we may have been taught are outdated, and that our fellow PWDs (persons with diabetes) are our teachers, as much as our health care providers. 

If you’re new at this diabetes game, you’re probably overwhelmed with all you think you have to do. Actually, I heard once that a group of diabetes educators stopped counting diabetes tasks when they reached 150!  So I’m going to lend you my “To-Dos” list. It is very small and it has served me well:

  1. Learn everything you can – go on websites, question your health care providers, read magazines, attend local classes or a support group. There are always tips to be had.
  2. Test your blood sugars frequently, including post-prandial checks (that’s two hours after you begin a meal.) and correct when necessary. This, above all else, has kept my A1cs in the 5s.
  3. Test before bed, I always do. If I’m low, I take a few bites of an Extend Bar, it keeps me level till morning. Before, I was a sweaty, babbling mess at      3 A.M.
  4. Move everyday, it makes you more insulin sensitive. I walk an hour a day. When I was sick and didn’t walk for two weeks, my sugars rose.
  5. HABIT-IZE. Turn tasks into habits so you can stop thinking about them. For instance, I test first thing upon waking, and I always keep my meter on my kitchen counter. No looking, no excuses.
  6. Before you run out of stuff you need, get more.
  7. Ask for help when you need it, ask people to back off when you don’t.
  8. Bring food to the airport because: 1) They serve next to nothing on airplanes, and 2) You won’t find anything worth buying in the airport you’ll want to eat.
  9. Use diabetes as a way to feel proud about how much you’re managing in addition to your daily life. You won’t get a medal for managing diabetes, but I certainly think you deserve one.
  10. (Since no list can end with 9 things), “Use caution when following this advice: side effects may occur”.  For instance, you may just find life a little easier.

Check your equipment – sometimes it’s your head, sometimes it’s your meter

Learn. It lightens the load

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My desire in doing this work is to help people live more successfully with diabetes. For me that means you know how to: 1) manage your blood sugars through food, fitness and medicine and 2) manage the emotions of living with a chronic illness. Given my nature, I’m more drawn to the psycho-social aspect.

In general, the attitude we bring to our diabetes and how we cope. I’m also drawn to how we create happiness and contentment in life and curious whether diabetes impacts our happiness quotient. I have heard now from most people that diabetes hasn’t really changed their level of happiness. Many, in fact, tell me that it has enriched their lives, impelling them to reach out to help others and appreciate their blessings. Nice huh? This morning, however, I was brought quickly out of the clouds as I took my first out-of-bed reading.

I extracted a test strip and put it in my One Touch Ultra meter, pricked my index finger and got a reading of 144. Well, 144 isn’t terrible, but it isn’t my usual 98 or 85 or 68. Surprised and perplexed I tested again. Second prick – 113. Now with two numbers so different, I did a third test – 112. OK, now I could pretty much trust the latter two tests. Before I go any further let me first address those of you saying, “What’s she complaining about, I’d be happy with 144!” Well I’m not complaining, but I want to share something worth remembering – sometimes diabetes involves managing your head, and sometimes, managing your equipment.

If your blood sugar reading seems out of line, it may not be correct. It’s worth doing a second test, or a third. When I saw 144 I first thought, hmmm, I did eat a little cheese and fruit before going to bed. Darn, I knew I should have gotten up and covered it with extra insulin but I just didn’t feel like it. Then again, would a slice of Manchego and a few strawberries really spike me 50 points? Seems unlikely. So I thought what else could have caused this? And then I realized that when the blood crept up the test strip on that first test it didn’t completely fill the strip. This is likely why I got a false read. 

Your blood sugars won’t always make sense. There are just too many variables going on in your body for diabetes to be a perfect science. However, the more you test the more you’ll get to know how food, exercise and medicine typically affect your blood sugars and that’s valuable information. Particularly when something doesn’t seem right. If your numbers in general don’t make sense, do what every other TV commercial today tells you to do, “Talk to your doctor.” If an occasional number doesn’t make sense, think what could be the cause. It may avert an action, like an extra dose of insulin, that will cause an even bigger problem. Believe me I’ve been there too.