[Mick]

Hey there ladies! I read and re-read your last post about "getting it right", so to speak, and you frustration at failing to do so. I decided that, for one thing, we needed to begin a new thread for this--the old one was way too many pages long! For another thing--this IS a different discussion, this thing about getting it right, avoiding lows (especially), and highs, and seeking some consistancy and expecting some results from all the hard work...

Okay, here's the real deal--this testing constantly, while a good thing, is making us crazy. I spent my first 25 years with diabetes without any meter--my doctor tested my sugar twice a year. Without feedback, we did not do much self-adjusting, and kept our food and insulin levels pretty much by the book. Who knew how well it was working? We had lows, that's for sure--we could feel them! I'm more than certain we had plenty of highs--when I was still testing my urine, I spilled sugar a lot of the time. 40 years later, I'm still alive, and pretty healthy. Maybe more information is not necessarily always better...? The other thing is, no matter HOW PERFECTLY we eat, inject, test, adjust, etc., the results will not be consistant. Why? Because we are organic, not mechanical. Our internal workings are not run by clockwork, but by tiny squirty squishy gushy organs and tissues, and they are unbelievably interrerlated and complex. There are SO MANY different aspects of this equation and they all effect other aspects differently. It's not just 3 simple variables--food, insulin and activity--THAT would be easy! It's time of day, time of the month, and, believe it or not, time of the year--all of that affects metabolic efficiency. It's not just the amount of insulin, but how it is absorbed--and that's a variable we often cannot know. Sometimes, an injection site will absorb very efficiently. Other spots seem to be like shooting insulin into a black hole--it gets lost in space somewhere in our body and has no effect whatsoever! Some spots may absord faster, some slower. More fat in a meal will make the same carbs absorb very differently than a meal with no fat (the so-called "pizza effect"). Proteins will also effect glucose levels in less-predictable ways. Hormones, stresses, strong emotions, intellectual exercise (I used to go low taking exams!), alcohol (fortunately, you have a few years before that becomes an issue!), depression, excitement, you name it--all things figure into this blood glucose level equation in unpredictable and ever-changing ways.

SO--there IS no perfection. Expecting such will always lead to frustration. We certainly attempt to work as though we were going to be perfect, but working for it and achieving it are very different things--the first is laudible, the second impossible. I consider it a VERY good week when I have had at least ONE DAY during which I did not have one test below 65 or above 200. That's a pretty wide range I've given myself, and getting even that right for a whole day once a week is pretty hit or miss. I don't ever blame myself. I merely attempt to understand as much as possible why I was too high or low and correct for those occasions. I work hard to get it just right all the time, but occasionally just give in to being human, and do what I want rather than what I should. That kind of premission-giving lends an element of freedom to this otherwise extremely rigid lifestyle--but if one is willing to accept the temporary consequence of occasional lapses, then there is no harm done, and perhaps some good. But the most important thing one must do is to just accept that this is NOT science, it's more like Voodoo. The rules are not absolute, and one's body changes all the time--it seems to be stable just long enough to get us comfortable, then it'll betray us and go its own way again! We are not machines--5 qts. of oil and we're good to go. It's a life-long experiment, and the results continue to confound me even after 40 years on the job. Ya just gotta accept, adjust, and go with the flow...

Don't worry,
Be happy,
Michael

[CarlyesHope]

Perfection is a nescessity for a perfectionist.... We're working on that aspect. Basically, we're just looking for reasons behind what happens, if I understand what's going on behind the scenes, I can be prepared. Carlye is still only 12, and I still have the right (and responsiblity) to protect her.

I know now..after reading a few posts.. that I can't control the highs/lows, but I was led to believe otherwise by the wonderful docs that harped on us about her diet, her schedule and how her numbers were "all up to us"

After a low or high, are you typically sleepy tired? With Carlye's first 63 she wasn't but after her second one about 4 hours later she was totally wiped out, she ended up taking a very long nap.. this was okay because she was off of school, but what happens when she is at school or you guys are at work??

Carlye will be glad to see you are back safe from vacation!

Kelly

[am1977]

Originally Posted by CarlyesHope

Perfection is a nescessity for a perfectionist.... We're working on that aspect. Basically, we're just looking for reasons behind what happens, if I understand what's going on behind the scenes, I can be prepared. Carlye is still only 12, and I still have the right (and responsiblity) to protect her.

I know now..after reading a few posts.. that I can't control the highs/lows, but I was led to believe otherwise by the wonderful docs that harped on us about her diet, her schedule and how her numbers were "all up to us"

After a low or high, are you typically sleepy tired? With Carlye's first 63 she wasn't but after her second one about 4 hours later she was totally wiped out, she ended up taking a very long nap.. this was okay because she was off of school, but what happens when she is at school or you guys are at work??

Carlye will be glad to see you are back safe from vacation!

Kelly

Kelly,

Carlye will adjust. Yes, she will most likely have to deal with HIs and LOs while out of your home, but she will manage. She will learn quickly to realize the signs of symptoms of each extreme and will be able to deal with each appropriately. I think in a way, Diabetes makes us very intune with what's going on in our bodies and I'm sure she will be too as time goes on.

Sorry for being repetitive...but take it one day at a time.

Take care

[sparkle9]

Very well said, Michael. After 34 years "on the job", and it IS a job, I too am still alive and pretty healthy.

With regard to Carlye and the lows...yes, sometimes I feel very tired after a low, but not always. Every day is different, which keeps life interesting as well as challenging!

Sparkle

[Mick]

Kelly--

It's not that one is unable to prevent most highs and lows--with planning, experience, will-power and luck, most can be prevented with the technologies available today. It's just that some will always happen, and of those, some you might be able to analyze and figure a probable cause for, but some will remain unexplainable. For the ones that I can offer absolutely no cause for, I chalk it up to either "sunspots", "full moon", "gremlins", "black holes" or "nth dimensional instability". In other words, no ideas, anything, everything, nothing... We try hard, and the harder we try and the more experience we get, the better we do. But we never do get it perfect (or, we might get it perfect for a while, but can never KEEP it so!) Let's see the doctor who blames unstable numbers on lack of trying to try it themself for a week! Ha!

I recommend that you read Dr. Bernstein's book--I can't recall the title off-hand. I believe he is a bit over the top as far as rules and limitations as regards food intake, but his book is sound medical science from a long-term personal point of view--the guy has been a T1 for over 50+ years, and he DOES know what he's talking about. His ideas are quite sound, and I learned a lot from reading his book, even though I was unwilling to go all the way and adopt the program he recommends. It is radical and inflexible, but if you can digest the basic science, you can shine a lot of light deep into the metabolic process we are all trying to control, and that gives one a lot better understanding for making one's own rules and getting it right for yourself. You'll come away from his book with sound knowledge, creative ideas and useful tools.

As far as tiredness following a low, yes, usually if I get very low (below 45) I do get pretty wiped out for a while, but I seldom give in to it. I am so used to 60's that I'm quite comfortable at that level. Carley is feeling "low" at that because she was relatively high for who knows how long. As she gets more used to normal numbers, 66 will not feel all that bad--but she should always feel something "strange" at that level, so that she knows to test. The lower one stays, the less one feels symptoms at those levels, and that's what is dangerous. IF she can manage to not spend too much time below 70, she will always be able to feel symptoms before she is too low to respond--that's really our basic safety goal.

Good to be back,
Michael

[CarlyesHope]

Hi there mick!!!
how was your vacation? what did you do? what did you see? Did you get a tan? did you climb a mountain or better yet, a volcano!!!!!? or did you just sit around drinking diet coke?( i couldn't say beer, i don't know if it has sugars, carbs or even if you drink it! ha ha ha ha ok bad joke.....) great to have you back talking!!!



carlye :p

[CarlyesHope]

Hello? Hello? is anyone on the forms? its been kind of quiet.......
someone talk to me!!!

Carlye

[Mick]

Hi there Carlye!!!

Vacation was excellent! We went to Florida to see my wife's parents. I did get a tan, and did sit around drinking diet coke--also a few beers, ha ha! The weather here in Buffalo has turned very nice (finally) and I've been out on my bicycle, riding and getting more exercise--which is really good for us diabetics. Let me know how everything is going with you!

Michael

[CarlyesHope]

Wow really!! all i go to florida for is to go to disney world!!! i am doing great!!i just started gym!! i am so happy!!! also at my dad's i got a go kart so i am always outside!!



i have been great!!!Carlye

[CarlyesHope]

Doctors stink!!

I guess I can't really say that, we haven't seen one yet, they tell us we have to come into the office - at times not convenient for us - yet we don't see doctors, we see nurses, and educators but no doctors... anyway they just told us today about these Ac1 thingy’s. Okay, news to us. And after two and a half hours we know nothing more. Why must they torture us? They say we have to return every four months - at equally as inconvenient times --!! Do you guys go that often? UGH, I'm not going to like this.

[Mick]

Originally Posted by CarlyesHope

Doctors stink!!

I guess I can't really say that, we haven't seen one yet, they tell us we have to come into the office - at times not convenient for us - yet we don't see doctors, we see nurses, and educators but no doctors... anyway they just told us today about these Ac1 thingy’s. Okay, news to us. And after two and a half hours we know nothing more. Why must they torture us? They say we have to return every four months - at equally as inconvenient times --!! Do you guys go that often? UGH, I'm not going to like this.

First off, seeing a doctor is not necessarily always the best thing. I often prefer to spend time with my endo's PA/CDE (Physician's Assistant/Certified Diabetes Educator). She is highly trained, personable, responsive, listens to me and respects me. Also, nurses, Dieticians and other health care professionals are valuable members of the health care team--don't devalue any of them.

As far as the "Ac1 thingy", it's called the A1c, formerly the HgA1c (short for "Glycosolated Hemoglobin"), and yes, it's really important. It is a measure of longer-term overall control than the finger sticks we do all day. The presence of glucose in the bloodstream leaves a type of "marker", and these markers will be increased or decreased according to how high or low one's blood sugars have been over the past approximately 12 weeks. After 12 weeks, the markers become metabolized. The number is stated as a percentage. They want us to be under 7%, but children are often allowed to remain in the 7's, as that is safer and more practical. "Normal" ranges will be from 4.5 to 6% Most Type 1 diabetics struggle to keep their A1c under 7, but it is a nice measure to have, because it is not an hour-by-hour thing which will go up and down depending on food, insulin absorption and activity. The A1c number CAN, however, give a somewhat deceptive picture of control, in the case of a person who has many highs and many lows, those readings will "average" out to a decent-looking A1c number.

Since the A1c measures over a period of about 3 months, many doctors wish to have it taken every 3 months, and so the common standard of treatment for Type 1 diabetics has evolved to a check-up, including blood draw for A1c, every 3 months. That way, you cannot get too far out of control for too long a time. My doctor recently asked me to drop down to every 4 months--3 times a year instead of 4--because I was very stable. I got a bit nervous about that, being used to getting the A1c % every 12 weeks, and being able to know if I needed to keep the same course or adjust to a more strict standard.

This was not always the case. I cannot remember getting an A1c until the mid-1980's. Up until that time, I went for a twice yearly exam, which included a blood sugar measurement. As this was before we had home glucose monitors, the combination of no A1c and no home monitoring gave us exactly 2 yearly random blood sugar tests! Mine were usually in the 70's, and so it was thought my control was excellent. My first A1c was over 10%, indicating that, at least for the 3 months prior, my control was poor. There is a conversion of A1c to blood glucose, and a 10% would indicate an average glucose level of about 240! An A1c of 5%= 90, 6%=120, 7%=150, and 8%=180. Today, my A1c's generally fall between 6.2-6.8% (126-144 mg/dl), and I have only had 2 above 7% in the past five years. Some people I know manage to get theirs below 6%, but for me, I'd be so low much of the time to achiueve that, I'd be in danger of constant hypoglycemia. So, I aim for 6.5%. Be happy for the standards of today, we are being taken good care of. The members of our entire health care team--doctors, nurses, dieticians, CDE's, PA's, Nurse-practitioners, social workers--are all on our side. Inconvenient is more about getting sick, not staying well, and constant check-ups is how we stay well! I'd be WAAAY more concerned if I had a doctor who only wanted to see me once of twice a year. In fact, during a few periods of unstable control or switching of insulin regimins, I've gone twice a month to the docs until I had a handle on my treatment. It's such a joy...

Michael

[HeatherP]

Kelly, it sounds to me like you should think about finding a different doctor. One who will help you with all the information you need. It's hard getting in to see docs when you're a new patient to the office but it the doc you're with is making you wait 4 months then what harm could it do? When I was dx'd I was in the docs office every morning for the first 2 weeks, and then once every week after that for a couple of months. I was never hospitalized. Many areas have "diabetes clinics" to manage all aspects of care. I don't know what kind of area you live in but here in my area within 1/2 hour there are two. Have you even seen an endo yet? A CDE? Have you ever gone to the ADA website? You might be able to get some help there - call your local chapter they might have a list. I know for a fact they have a "Patients Bill of Rights" and it sounds to me like you and Carlye aren't getting the attention you need.

Heather

[CarlyesHope]

Heather, Mick,

They answer the questions we have, which really aren't many becuase I get most of the basic info I need from this site, (any actual medical advice i do double check with the "docs") The nurse is great, the dietitian was fine, i didn't have any questions about food (it really seems straight forward) she seemed shocked/annoyed that i didn't have any food related questions - should I have?

The nurse says Carlyes numbers are great, that we have good control, her weight is going up nicely - she lost 30 #'s in 3 weeks at the onset. I am not upset that we have to go, even though Carlye hates it. Personally, I am impressed with us, I feel as if we have done a good job too. I feel like we are in control - most days - and not the diabetes.

I was really irritated that an appointment for 4 months from now i only had the choice of 2 days and 2 times on those days. I asked if i could make her next 4 month apt at that time too so that it would be more convien. for me and they said sorry, we don't make apts that far in advance, it wouldn't be fair....

I'm am a student now so it is a little easier for me to take off to go to these appointments but what do working parents do? What will happen when i do get a job? I can't see too many companies tolerating it - expecially when they can afford to be picky about whom they hire.

[HeatherP]

Okay, it sounded like you weren't getting attention you needed. As far as food questions goes, if you understand what you've been taught and Carlye sounds like she's doing well then there's no need.



I'm shocked they don't schedule that far in advance. If they're going to make you wait 4 months then why not schedule them that far away? I usually have to schedule my physical 3-4 months in advance. I'm glad to hear Carlye is adjusting so well, and I really hope you can find a solution to the scheduling conflicts.

Heather

[CarlyesHope]

I am thinking about looking for new docs, have any of you switched? seems wierd to do so since they have been with us since the beginning (wippee, a whole 6 weeks) bus still....

I don't like the many issues with regards to scheduling and I don't like some of the conflicting info (the lantus/novalog mixing) ...

kelly