Share and Not Share

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

I’d like for my healthcare team to see and appreciate that every day is different. Having the “right” basal rates or insulin/carb ratios in place is certainly a desirable thing.  But my activity levels, work times, food choices, etc. are very fluid.  In fact, there are really very few constants.

 

One of the most hated questions for me is “so what does your blood sugar normally run?”  Sounds innocuous, but it makes me want to scream…THERE IS NO NORMAL.  There may be A1C’s, other averages and standard deviations, or a % of the time spent in a certain range, but there is no normal.  If you really want to know, download my meter.  Most of the time endoc’s know better than to ask that question, but other members of my health care team (opthamologist, obgyn, etc.) seem to have the annoying habit of asking it at every single visit!  I would like for them to really see how hard that question is to answer.

What do I hope that they don’t see?  Now that is interesting to ponder.  I think it would be best for me if they saw everything.  Hmmm…sounds kind of like God’s role though.  Human to human, I guess I’d rather it not be known how lazy and just tired of the whole thing I am at times.  How I choose to eat something else sometimes even when my blood sugar is high.  Or how I go to sleep more nights than I’d like to admit not testing after dinner because I’d rather fall asleep on the couch watching Survivor or Dancing with the Stars. 

Emergency Brake

Have you ever pulled out of the driveway, and realized you had the emergency brake on? The car goes alright, and maybe even quite a distance before you notice it, but it's slow and sluggish.

Well, that's how I think I've been approaching my athletic endeavors. Yes, I've been pulling out of the driveway, and even getting onto the road pretty often, but not doing everything I can to achieve. So I decided this is the year that I take the brake off. I finished my 3rd 1/2 marathon in late February, and am moving on to a goal of one triathlon a month for the next 6 months. Instead of ignoring the orthotics with a hole, and the IT band pain that has been with me off and on for the last couple of years, I have sought out professional help for each issue (no, not that kind...at least not yet :) ). I replaced my mountain bike with a road bike that is more appropriate for triathlons. I've joined an online mentor group, and ask lots of questions. Oh, and yes, I am training consistently, and hopefully getting a little smarter about it along the way. I've dropped 8 lbs since mid December, and it's gotten easier instead of harder to eat well.

I don't know why I have not done these things before, but there is just been this underlying fear of really going all in, or that I somehow don't deserve the resources to help me along the way. I'm sure there will be bumps along this road, but it's just a different attitude of tackling them instead of hoping they will go away. So no more burning up the emergency brake!

The Value of Acknowledgement

I went to a new podiatrist this week for an opinion as to whether my orthotics and shoes were right for me. Long runs have been causing me some pain, and I'm trying to be proactive about it instead of waiting for a total breakdown that makes me scrub my goal of my 3rd half marathon. So I found one who is about my age, and training for her first ironman. Based on my experience with other non-endoc medical professionals, I wasn't expecting a whole lot with regards to diabetes understanding.

We got to that inevitable question..."So, how is your diabetes?". I proceeded to tell her "decent...A1C usually around 6.5, slipped up to 7.0 last time but working on it". The next thing she said was music to my ears. "Well, it can always be better, but that's actually pretty good for a T1. I know it's a really difficult thing to manage." It was those last words that got me. I just don't hear that much except for the DOC. It means so much for someone else to simply acknowledge that it is difficult. No advice, no second guessing, no dwelling on the issue, just acknowledgement of what is a fact.

I hope I can apply that to being a better friend to others.

Speechless

I've read lots of great posts lately about educating and advocating. I just can't figure out how to do that when I'm speechless. Today at a work luncheon, small pieces of toffee were passed around for us to sample as a potential client gift. I had one that measured maybe 1/2 an inch, and the lady across the table from me looks at me and says very loudly...."You can't eat that!". She then proceeds to tell everyone at the table "She is diabetic!" Then she turns to me again with a scowl on her face and says "You're cheating!!!" No, she wasn't joking. All I could manage to get out was "I take insulin so I can eat. Here's my pump (pointing)". I knew that anything I could say would be useless in convincing this lady of anything. One of my co-workers nodded and shot me a look of understanding and encouragement, and I frankly think the rest of them were as dumbstruck as I was. So perhaps staying silent was the best thing I could have done so that her rudeness could just echo in the conference room without interference. I have the urge to send her some educational material about diabetes, or perhaps an excerpt from a few of the wonderful "6 things" posts that you guys have written, but I doubt it would be worth the effort.

It's Not Always the D

I just returned from a run that dropped my blood sugar. Only down to 72, but in the middle of a run, that's not the best place for it to be. So I choked down 4 glucose tabs, swigged some water, and continued on. Not the best run, but it's summer in TX, and the heat and humidity really saps me. When I got home, I took off all my gear (fuel belt, Ipod, etc.) as usual. Then I noticed that I could not hear well out of my right ear. Sort of felt like it was under water.

So I start thinking, wow, this must be a new symptom of a low. As I got my meter out, I was expecting a 46 or something similar. But my blood sugar tested at 116, so all was well there. Then I start wondering if maybe I have some water in my ear from swimming on Sunday, or maybe I turned my Ipod up too loud, or maybe this is a residual symptom of an earlier drop in blood sugar, or.....???? Finally, I reached up to feel my ear and realized that the spongy earbud cover from my ipod had come off and stayed stuck in there. Had to just laugh at that point. Talk about overlooking the obvious! I hate it when other people or doctors jump to the conclusion that everything going on with us is somehow D related, and there I went and did it myself!

Late to the Party

I really wanted to participate in D blog week. You know, be a better citizien of the online diabetes community. But my "want to" got swallowed up in other aspects of life, and I didn't ever get around to it. Actually, that's not true. I wrote a post the first day, then promptly lost it. Anyway, I have really enjoyed reading everyone's posts, so I thought I'd try to catch up with an abbreviated version of the week's topics.

What is a Typical Day? - Although my A1C is decent (usually around 6.5), there is no typical day, and my standard deviation is not very standard. Diabetes tends to be randomly unpredictable, and also morphs over time. The trouble is, it's hard to separate what is day to day unpredictability and what are truly trends. That is especially true since I also have trouble making myself sit down to analyze the data. But either way, diabetes is always playing a tune, either in the background, or blaring into the foreground.

How to deal with lows? - Sometimes I'm very measured and disciplined with eating glucose tabs or a cliff shot block and waiting. Other times, I wind up raiding the pantry for things like cake frosting or molasses, and chase it with orange juice. If that doesn't make me feel better, but I know I've already overtreated, peanut butter is the ticket. I can't remember what my lowest low has been (upper 20's I think), but I have never passed out in 17 years with D, so perhaps I inherited the "no pass out" gene along with the T1 gene. My glucagon is long expired, so hope I don't need it.

Best Supporter? - That's easy. My husband is the absolute best at balancing loving concern with letting me handle it. I cannot tell you how grateful I am for him. I really struggle with letting non-D folks in on what it is really like living with D, and tend to put on a brave face with most. I also do that with family members who have overreacted in the past. But my husband sees my not-so-brave face, and still manages to stay balanced. Amazing!

Carbs? - Absolutely, in moderation. Nothing is off limits, but some things are not for the best. Keeping it to 45 grams per meal or less is what works for me, and I do that for most of the day. But I'm afraid my pump has given me a little too much license in the snacking department. My after dinner snack-bolus-snack-bolus fests are the bane of my control, but I have yet to chase that monster back into the closet. So total carbs have been averaging 165 per day of late. Still fairly moderate I suppose.

Exercise? - This is weird, I know, but I love it! Running, walking, and more recently swimming and biking. It's all good. It is an escape, a chance for my mind to wander, for me to pray, and to just feel alive. I love experiencing changes in the weather, and have been known to purposely run in the rain. I often take my most active dog along, and love to watch her senses come alive as we stalk squirrels, or she drops to the ground to roll in the cool grass. I've done lots of 5K's, a couple of 10K's, a couple of (very slow) 1/2 marathons and 1 triathlon so far. It's not easy trying to balance the insulin/carbs/exercise/all other X factors equation. Sometimes I fail miserably and wind up in tears as I cut a run short to treat a low. But part of the appeal of exercise is that feeling of transcending diabetes in order to do it.

Thanks for indulging my tardiness, and I look forward to reading more of everyone's posts.

Why this but not that?

I work as a CPA, but do not prepare federal income tax returns as part of my work. Never have; I just don't want to specialize in that. Around this time of year, as April 15th approaches, lots of well meaning friends express concern about "how busy you must be this time of year". This is in spite of me having told many of them previously that I don't do taxes. I do not find this to be upsetting at all, and have plenty of patience and grace to extend to those friends, as I'm sure they extend to me on other things.

Contrast that with how I feel when those same well meaning friends make comments about my diabetes. You know what I'm talking about....things like "oh, I forgot, you can't eat that, can you?", or "you need to eat your lunch right on time, don't you?" That in spite of me having told them previously that Type 1 diabetes is not so much about what I cannot eat or when I eat (thanks to my pump), but about matching insulin with what I do eat and my activity level. Why do those questions still cause a flood of emotions, and leave me often reliving the comment long after it is made? I do my best to extend grace to those friends, and in my head realize it's unrealistic to expect them to remember much about my diabetes. But it's a battle to fight through those initial emotions to get there sometimes.

Both are sterotypes of sorts, but one leaves me feeling judged, and the other does not. How about you, have you found a dichotomy in how you respond to D related comments vs. comments about other aspects of your life?