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Location: Minneapolis, Minnesota, United States

Diagnosed with Type 1 diabetes in April of 1980. I recognize the incredible mental struggle of living with diabetes. I hope to share my struggles, my successes, and everything in between.

Sunday, August 13, 2006

Maybe it's the Moon?

Is it just me, or is there a lot of emotion floating around the OC lately?

I thought it was just me, but then I sat down tonight to catch up on some posts, and I was just struck by the seemingly all encompassing "blah" that many of us are going through right now.

I had my endo appointment on Friday. It did not go well. I think I'm over reacting, but maybe not.

See, I'm particularly vulnerable and overly emotional right now, due to my mismanagement of my prescription for Lexapro - the anti-depressant that I take. Typically these anti-depressants are not to be stopped "cold turkey". Well, guess what - I ran out. I've got more on the way, but I completely missed that critical "catch point" where you are supposed to actually order it in time for it to arrive before you run out.

Managing prescriptions is another PITA (Pain In The Ass) thing. Why can't your meds run out all at the same time? Because that would make your job way too easy. It's another full time job managing all the damn prescriptions (not to mention actually paying for it all).

By the time I hit my endo appointment, I had been off the meds for 7 or 8 days, expecting a delivery any day - figuring "no big deal, they'll be here soon". Well, days 9 & 10 pass and I place a call to figure out what's happening. I've got it all straightened out, and expect a delivery any day now.

So the doc spills the lab results. A1C - 9.1.

(stunned, quizzical silence)

"But that's actually UP from my last time right?"

"Yes, a little, last time was 8.9, but you know what you need to work on, so just keep at it. Don't worry about this too much - just keep working on it - you're doing good - you know your problem areas and are focusing on them. Don't let this upset you too much".

(more stunned silence as he rattles off more lab results)

"Um, wait - did you just say my HDL has gone down?"

"Yes, it's at 26, down a bit from (low thirty something number). I'm not going to take any action on this yet, let's give it some time and see where it goes. "

"That's the one that is improved with exercise right?"

"Yes"

"But I'm playing full court basketball for two hours, three times a week...I just don't understand...?? I don't see how anyone could be getting any more exercise than I'm already doing?"

"Again, don't worry too much about it yet - let's see where it's at next time and go from there"

He walks me out to the receptionist area to set up my follow up in three months - offering more encouragement and telling me not to be too upset - we'll work it out with time.

I leave the office, with my head hanging so low that I can't see anything past a foot and a half in front of my feet. I just simply can't believe it. How can it be? More exercise? I can't do more exercise. With the amount of exercise I'm doing, my HDL numbers should be through the roof - how could they have gone down? I just don't get it. And my A1C - what the fuck is up with that.

Am I fooling myself? Thinking I'm doing much better than I actually am? Or is my BG really averaging 240. Impossible. ImFuckingPossible.

I'm out in my beat up old truck, going through wild swings of wanting to smash my head into the steering wheel, and tears welling up in my eyes. From being all super pissed off to being defeated. Just literally crushed by a 10 minute visit with my endo. Deflated. Defeated. The numbers just don't make sense. Not sure if I'm more upset about my shitty A1C, which says that I'm destined for devastating complications if I don't get my shit together, or my low HDL cholesterol level indicating that I should give up my family and job just so I can exercise more than I already do. Why do I take these numbers, and translate them into some personal failure?

What is going on?

How can this be?

It doesn't make sense.

My numbers say that I'm not working on it - but I am working on it. I'm working hard. And it's a lot of work. All that work and I'm broadsided with these numbers that indicate failure? But I'm doing all of the right things? And I'm tired. Tired of working so hard to be rewarded with what...

I spent the next few hours just an emotional train wreck. Having been off my "brain meds" for a while, my mental ability to withstand these things, the ability to logically analyze and plan for action, had gone completely out the window. So, train wreck it is.

We are often faced with things that are what they are. You can't change the truth. I can't change the fact that my lab results are what they are.

What I can do is look at my situation - try to figure out what it is that is not working right for me. Try to figure out what I need to do differently to get myself back on track.

In reality I know what it is - and it's something I don't want to change. I know I need to, but I don't want to. But - I do want to - or I think I need to want to (huh?). My diet. My eating habits. My carb cravings. My unbalanced meals. My long times between meals. Some days with way too many (unbalanced) calories, the next day virtually fasting all day to make up for the day before.

Is it any question why my body is revolting? How can it survive through all of the punishment I put it through? How can I play basketball when there is nothing for it to burn for fuel? How can I even put together two rational sentences when I'm causing such destruction inside myself?

Eating a nothing but a bagel for breakfast, playing (hard) basketball for two hours, having nothing but popcorn for at least 5 to 6 hours afterwards, then having a carb loaded dinner right before bedtime. What the hell am I doing?

When you really want to do something, you find a way around the obstacles you are faced with.

And I know that I will feel and perform so much better with a balanced and nutritional lifestyle.

In some ways I feel that I'm close - that if I can just get this piece of my self care put together that I'll have the package mostly there.

So what's the delay? Why don't I start? If it's that clear, why not just do it?

I don't know.

And I feel really fucked up about not knowing why I continue this obviously self destructive behaviour. I'm not a highly educated person, but I do think I have common sense (but maybe not eh?). I also feel pretty strong about my level of knowledge around diabetes. Is it a matter of will power? Where is mine?

So why don't I just fix it?

As this stuff has started to sink in, I think that there are a few things that I need to deal with.

1) I tend to be an "all or nothing" kind of person.
2) I don't feel I have a good level of knowledge around nutrition and balance.
3) I believe I have some deep seated mental issues around eating, and am not at all in tune with my bodies signals.
4) Denial.
5) Spinning my wheels. Working hard in areas that are not paying off.

The lines around these issues are all very gray, and they all blend together creating a recipe of self destruction.

Mix issues 1 & 2, and I get frustrated when I don't know what to do - so I toss it all out the window and indulge in some huge "all carb" type meal. "If I can't do it perfectly right I'm not going to do it at all". What sense does that make? And how impossible is it for me to expect perfection all the time? What a way to set myself up for disappointment when I can't do it!?

Mix issues 3 & 4 and I just want to crawl in a hole and wait for it all to "go away".

Issue 5 is about spinning my wheels. Working so hard and not getting anywhere. There has got to be a better way.

Mix them all together and you end up with many imbalances that throw you very much out of your natural state.

So, where do I go from here?

Well, first off, I'm sure I'll be feeling better equipped after my "brain meds" show up and have had a chance to do their thing. Second, work to realize that I can't fix these lifelong habits and behaviours overnight. Work on making small improvements. Recognize that things take time, and to not be frustrated so quickly. Be patient. Third, Improve my knowledge around general nutrition. Maybe get some books or something. Fourth, look at ramping up the frequency of my therapist appointments. Fifth, identify where my hard work will reap positive rewards, and re-focus my energy there.

I am tired of it all though - I mean, does it have to be work all the time? Just tired. Tired of dealing, tired of fighting, tired of calculating, tired of counting, tired of limits, tired of tired. Tired of mustering up the strength to battle on.

But what am I going to do? Just quit and let diabetes destroy my life? No - that's not me either. I am strong, even through these periods of "down".

Check back with me once my meds arrive. To be so reliant on those damn brain drugs is disturbing to me, but it's quite clear that I can't do without them. I'm a mess.

19 Comments:

Blogger Megan said...

Scott, I am so sorry you had such a disappointing appointment.

You have been such an encouragement to me and I just don't know what I can say to you other than that your blog makes it obvious how hard you are trying and I am sorry you are not getting the results you want.

I hope things improve and you get your brain meds quickly.

10:06 PM  
Blogger Lyrehca said...

Hey Scott,
I know the feelings of disappointing numbers and the feelngs that I'm doing all I can. Heck, I know from Lexapro, too.

Have you already talked with a nutritionist? One who gets diabetes? If not, maybe a visit would help with figuring out carb issues. And while I hear you on the "all or nothing" thing, could you try, just try, to swap out, say, your breakfast carb for a week and see what happens?

For example, a typical bagel is about 60 grams of carb. That's four slices of regular bread. (Weigh the bagel and it's approx. 15 grams per ounce. Some bagels are even bigger than that). Then consider an English muffin (Thomas's are only 25 carbs apiece), or maybe two slices of whole wheat toast (something like 12 carbs apiece with the fiber included.) Or would you consider nuking a bowl of plain oatmeal, then doctoring it up with Splenda (my meal of choice)? The oatmeal, with the extra fiber, all takes a slower time to get absorbed in the bod and it might help with your morning numbers. (Plus it's something like 22 carbs a half-cup).

It does sound like the diet part of the equation could be causing the averages. And I know it's hard to change eating habits. But could you try doing it slowly, meal by meal, and picking higher-fiber and lower-simple-sugar carbs? You might be so psyched by the changes you see that you don't even miss the bagels in the morning.

And sorry to hijack your blog; feel free to email me if you want more suggestions on what the heck to eat.

3:14 AM  
Blogger Heidi said...

Wow, Scott, that was one tough post to read! I am sorry about your results and can totally relate to the feeling of somehow having failed because the numbers don't seem to show the real effort behind them. However, the daily "running" of the complicated factory of the body contains so many unknown factors and factors that we by no means can control, that we be judged/judging ourselves on blood results alone.

When I read your blog, I get the impression that you are aware of the issues you are fighting, and that you actually work very hard to solve them. That is the first, and possible the most important, step on the way of changing things! Instead of keeping it to yourself - thus being at risk of feeling even worse about it - you blog about the frustrations when things do not work out as you want them to. This is therapeutic too, I think, and it allows you to draw on the experience of fellow diabetic bloggers, so you don’t have to start from scratch every time.

Keep up the good work! I am sure you will succeed one step at the time!

5:14 AM  
Blogger Bernard said...

Scott, Thank you for such a posting from the heart.

I'm sorry that your numbers didn't show all the work that you've done in trying to improve them. It sounds like you've got some ideas already on how to turn them around - good for you.

I know what you mean about refills. I hate having to order stuff by mail, and then forgetting and running out. What I've started doing for some things is actually putting a reminder in Outlook to tell me when to reorder. It works, when I remember to put in the reminder!

Have you tried adding some substantial fiber to your meals? Some of the breads now available have 2g-3g per slice, and with a few vegetables you'd be on your way to slowing down that big blood sugar surge from the carbs.

You'll figure out, just give yourself time to do it.

5:22 AM  
Anonymous Caro said...

Scott,

You're not wrong about the amount of emotion in the OC right now. I'm sorry you're having such a rough time. I wish there was something that I could really do to help.

I do think that you need to take a step back from this until you've been back on the Lexapro for a little while. With a break of this long, it is going to take a while for them to kick back in. And besides, I think right now maybe you need a break - maybe you've actually been putting too much into this and you've burned yourself out. Would not thinking about and focusing on diabetes for just a couple of weeks actually refresh you, and help you move forward?

I'm curious that you came away from your endo appointment with all those feelings and frustrations, yet you say the appointment lasted only 10 minutes. Forgive me if I'm off-track here, but is your endo actually giving you any real support in reaching your goals, or is he really leaving you to do it all yourself?

Remember that no matter how much it feels like it, and just because it is our condition, doesn't meant that we have to cope with diabetes completely alone.

Whatever happens, you'll always have us.

Thank you for sharing this, Scott

Caro

6:24 AM  
Blogger Vivian said...

Sending HUGE HUGS!! I am so appreciative of your blog, it really helps me stay on track about teaching Daniel about food and how it affects us. I really hope that you can find a way through all of your issues. We are all in your corner and if there is anything we can do, such as be your accountability group, we are here for you. You do work hard and even though your appointment wasn't what you wanted or expected we are still very proud of you.

7:31 AM  
Blogger Penny said...

Sending you a big hug. Don't give up. Just keep trying. My cholesterol was a little high when I had it checked last week. I'm a nurse. I know what I need to do, but I'm not doing it yet. Why is that? I'm not sure.

Here's hoping your "brain meds" show up soon and things will get better.

10:10 AM  
Blogger MileMasterSarah said...

Scott,
Ive never commented on your blog, Ive read the ENTIRE THING in the past week!.....haha! Im a diabetic for 15 years, pumper for 11 years, with two kids age 6 and 3, and an endurance athlete(runner) who has run two half-marathons, and seriously, I couldn’t have done it without my diet, my family, god, and my pump! Ive greatly enjoyed reading your blog (start to finish) and about your struggles, and triumphs. I find it amazing to read because it sounds so much like me! Ive even forwarded a lot of your blog to my sig. other just to help explain to him what I go through. I can understand going into the doctor and your numbers just don’t reflect all the work you’ve done or all those tests you’ve taken, all the corrections you’ve made. I myself struggle primarily with food, and I think a lot of it has to do with how much I love food! I don’t have normal tendencies towards eating, I love to eat, and I want to do it all the time (anything sweet, sticky, and some sort of carb monstrosity)! This can make weight maintenance and blood sugar control difficult. I have made a MOUNTAIN of changes in the past year in my diet and I have had some success. One thing Ive noted as Ive revamped WHAT I eat and how I eat is that Ive done it one thing at a time. If you do too much at once it is just too overwhelming. I think one of the responses that focused on changing the type of carbs you eat is a huge thing, and it will make a huge difference in how you feel. And not all carbs with fiber are boring either. If you make a trip to your local coop, (I know of one in saint paul but none in Minneapolis, I am in saint cloud) you can view all the different options in complex carbs there really are. It isn’t limited to all-bran and oatmeal! And stuff like strawberries are HUGE in fiber, but so sweet, and can be so satisfying to a carb craver. Ive also found some great pastries at my local coop that are made with soy flour rather than regular flour, and sweetened with things like fructose and maple syrup that really effect my blood sugars pretty slowly but taste just like a brownie/cake(those vegans really know what’s up sometimes!). Don’t be afraid to try new things if you decide to venture out and work on your diet, you might be surprised with what you find!
Sarah

11:00 AM  
Blogger Sandra Miller said...

Scott-

This was a difficult post to read, and I'm sure, a painful one to write.

When you walk into an endo appointment, and your results are nothing like you expected, it can be really hard to motivate yourself to keep at it.

I know.

You feel like a failure.

But Scott, anyone who really gets this stuff can tell you that you are far from being a failure.

In fact, you're an inspiration to every individual lucky enough to have found your blog. Do NOT let this appointment take you down. The hard work you put in for yourself, and your willingness to share your insights about that work -- about this disease, in general -- are incredible.

You're an amazing guy, and I feel privileged to count you among my cyber friends.

Hang in there, man.

Sending you one HUGE HUG.

Sandra

11:54 AM  
Blogger Dianne Kracht said...

Scott: Please don't feel as if you are a failure!!! I can't tell you how many years I went to the doctor only because I had to - I have had many A1c's that were at 9.0 or above and I am still hanging in there... You are an inspiration to many people out here - me included - for your honesty and integrity when posting...

As I was reading this I thought of the many times that I have left the doctor's office - I'm sure - feeling the same way you did - and it just ruins your whole day, week, or weekend - whatever the case may be... Scott, if there is anything I can do to help you - please don't be afraid to ask - I will do anything I can to help you - just let me know!!! This disease SUCKS and you are not alone - just let us know how we can help - I will drive up and see you if you would like me to - in order for you to be able to hang in there - just remember - I am here for you and will help any way I can... Hang in there hon - everyone is pulling for you - and we know exactly how you feel... Dianne.

3:39 PM  
Blogger type1emt said...

Scott,
Whoever(was it Mac Arthur?) said Never, Ever, Ever give up obviously never, ever, ever had an a1c over 9.
Or had other dissapointing bloodwork.
Been there, done that, got the t-shirt.
Have you had your meter checked against the labs? There might be a discrepency there.
Don't give up(take a break from the most particuraly overtaxing thing)- we're behind you, man.

4:03 PM  
Blogger Minnesota Nice said...

Hard travlin', my dear brother.

Scott, I've known you about a month and I do truly feel that you are my brother because you've so generously extended yourself to me (how many people are blessed with that gift?)

The pain and chaos that you're immersed in have taken on their own powerful momentum, but, just look at all the concerned responses you've gotten. Your own personal "diabetic posse" (to use Lyrehca's expression) is all saddled up, ready to put up the roadblocks to stop that puppy right in its tracks.

I must also tell everyone who previously commented that there were many helpful messages for me too - I am impressed by the inherent wisdom in all of you - powerful stuff - thanks.

Scott, your commitment to the truth of how you are feeling is admirable. I've got feelngs buried a mile deep and they are still poisonng me, like toxic chemicals seeping into the water table. Your courage to explore the demons has given me the strength to maybe do the same.

You are brilliantly articulate and a wonderful communicator.

You have an outstanding knowledge of "the 'betes".

You are maybe closer than you think to pulling it all together. That "corner", waiting to be turned, may not be far away.

You have the strength to get through this rough patch.

We cannot live without the numbers. But, I'd still like to line yours and mine up along the Lake Street Bridge and knock 'em off into the river, one by one, and let Ol' Miss' carry them away - until tomorrow, when it's time to try again.

Peace to you in the coming days.

Kathy

4:42 PM  
Blogger J said...

Scott yet again I think you and I have the same brain at times I so often feel as you feeling and being that we have had Diabetes for the same amount of years .. I too feel "tired" of it all often and this has been for the last 5 years I look at the way my cousins wife handled her Breast cancer and double masectomy at 31 years old and managed to exercise everyday and because she did that even threw chemo and weakness I found myself in aww and a bit jealous wondering why I can not be that strong ... but you know what I realized after a long while in the beginning we went like bulls and faced this head on with determination and fight .. now it has been 25 years we still have the strength inside but it is like being poked at for so long at some point you just want to say STOP! and smack the person who is poking you only thing is there is no one sto smack when you turn around and it Fucking sucks... If we take a vacation that is just more work to be done when we get back so where do we find the balance ? ( when I figure it out I let ya know) it is normal to be tired I am told but it is the finding my way back that is what is most frustrating.,.. from what I read your doing the best you can.. if at the end of the day you can say I have done all I can do today then you have done your best you have succeded it may not always show but you know the truth.. often times people look at me and because I am over weight and not loosing any they think I am not trying .. as I try not to raise my middle finger I try to remember I am doing the best I can for today.. one of my favorite saying is "tommorrow is a new day with no mistakes in it" On the Lexpro part I for one know that if I have not taken my meds for 2 days I get this weird feeling llke "eleictric" jolts that come up it is a "withdrawl" thing that the doc told me once I take my meds it goes away... it can make me jumpy not sure if you experiencing that but it sucks.. and I cry easily off the meds try to breathe and hang in there I am here if you need to chat . (((HUG)))

8:09 AM  
Blogger Kerri. said...

Scott,

I'm late offering my voice to this one because I had to really absorb what you were saying. I actually printed out your entry and read it before I went to bed. I mentally drafted a response in my head, then mentally edited it, then mentally returned and rewrote it.

And I still don't know what to say.

You are an inspiring man and, I'm sure, a wonderful husband and father. But Scott, it's the honesty that fuels your pen that has me reading with tears in my eyes and recognition in my heart.

You experience what we all are experiencing or have experienced in the past: frustration. You don't garnish your words with platitudes and embellishments - you write it like it happens. You write exactly how you feel. I respect that. Your honesty encapsulates the Real Diabetics who are out there. The ones who make mistakes and try really hard and do their best and still experience serious frustration and setback. You, like me, write about the real shit that happens. The screw ups and mistakes and bouncing bloodsugars and chaotic meal plans.

I really respect that. It's hard to put your real life out here for everyone to read. "What if they judge me because I ate a cheeseburger? What if they think I'm a 'bad diabetic' because I miscalculated my meals? What if ... what if ..."

You are brutally and poignantly honest at all times. I have such respect for you, Scott, as a writer. As a fellow diabetic. And as the friend I have yet to meet in person but who hold such a special place in my heart.

You will survive. And you will persevere. And my God, you'll make such an impact on us all as you fight.

-- Kerri.

11:47 AM  
Blogger Minnesota Nice said...

Scott,
I don't think anyone mentioned this yet, but..........maybe it really was that humungous high that unfairly elevated your A1C.
Regardless of what the research says, we all know that we are each filled with physiological quirks, and maybe this was just one of yours.
Kathy

5:14 PM  
Blogger Michko said...

Scott,
I'm just about in tears after reading this. It's like I wrote it. The first thing I thought of, actually, was something my mother told me shortly after I was diagnosed. Something about a connection between depression and diabetes. I take Prozac and have for some time. I don't remember everything about the connection, but apparently diabetes management has some effect on depression. And it makes sense. We're mentally doing the work that our bodies are supposed to be doing involuntarily and it's enough to make us want to throw in the towel more often than not.

I think, though, that what you have going for you is what seems to work for me. I get pissed off. I allow myself to be angry and cry and yell and scream and literally get it all out. And when it's done, I often have a better focus on whatever issue I'm dealing with (diabetes, kids, finances, whatever). I think if we suppress that anger it only festers and makes things worse.

It's obvious that something's not working and with this stupid disease it all boils down to trial and error.

You've been so encouraging to me on so many occasions. I know this is hard. I hope we can help you through.

11:22 AM  
Blogger Stacey said...

YIKES Scott - What a post!!
All I can really say is that I'm absolutely sure that all of us have felt how your feeling at one point in time or another...ok definitely at more than one point in time.

All you can do is take a step back - a deep breath - and dive right back in.

You'll find the strength again...but it's certinally human to have to spend a little time searching for that strength every now and again.

; )

3:08 PM  
Anonymous Chrissie in Belgium said...

Hej Scott - you MUST cheer up. It tears me apart to have you so very unhappy. I care and so many others who read your blog care!You are a great person and you ARE trying your best. This is a shitty disease. Look we have all been there - gotten terrible results, tried so hard and failed, don't know how to go on! There is no way I could believe that there exists any diabetic who has not felt as you do that "I am a total failure". That is the problem with this disease - we all end up feeling like failures because we are trying to manage something that is impossible. Over our head hangs the cloud of COMPLICATIONS. The thing is that we do not today have enough knowledge about this disease AND we are only human. We have feelings and emotions and how can one always go on feeling that we fail, day after day after day. Let me tellyou that YOU HAVE NOT FAILED; YOU ARE TRYING THE BEST YOU CAN. I HONESTLY BELIEVE THAT HUNGER, THAT WHICH MAKES US EAT IMPROPERLY, IS A CHEMICAL RESPONSE AND THAT IT IS ALMOST IMPOSSIBLE TO CONTROL. I have had diabetes for 45 years. I am convinced that ONLY when the blood glucose is kept steady between 80-100 mg/dl is a person not hungry. So for the most part a diabetic has to learn to live with hunger. This craving is VERY STRONG! That is why I really try to keep my bg level - otherwise I feel terrible! It was not until 2 years ago that I realized this, when I got a pump. Before that I couldn't keep the bg 80-100. Now I cannot either but I have seen that when the bg is level I feel like a completely differnt human being. I feel so wonderful - so i seek good control to feel good. PLEASE do not be so hard on yourself. Scott, your honesty in your blogs is exceptional and it is something that you have given all of us other diabetics! I just wish I could say solmething to help you as you have helped me. PLEASE REALIZE THAT YOU ARE A GOOD PERSON AND THAT YOU SHOULD BE PROUD OF YOURSELF FOR BEING WHO YOU ARE.

1:26 PM  
Blogger Nicole P said...

Scott -

I'm sorry to be so late in my response. I wanted to say just a few things.

I bet you can tell from my posts lately, but I think I have a very, very good idea of how you're feeling lately. And how this appointment made you feel. Why is that nothing seems to work? If I'm doing the right things - shouldn't I come out with the right numbers? Who dreamed up this damned disease and how can I find and eliminate them?

I know you'll figure some of it out - but I guess we've all got to learn that the numbers are not always going to be perfect and frequently, they won't make any sense at all - but we've got to keep doing our best - just like you're doing.

I hope things start smoothing out - please email if I can be of any help!

8:33 PM  

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