Gestern war ich bei meiner Diabetesberaterin und das war auch höchste Zeit. Meine Werte waren so unkontrolliert, wie ich es noch nie erlebt habe: Hohe Spitzen Mittags und dann ein rasanter Abfall nachmittags mit extrem langwierigen und heftigen Hypos abends.
Das hat mich völlig fertig gemacht. Selbst wenn ich alles richtig gemacht habe, Essen abgewogen, DEA gehalten, waren meine Werte trotzdem so. Ich hab da überhaupt kein Land mehr gesehen, geschweige denn logische Zusammenhänge. Und wenn ich eins nicht ab kann, dann, wenn Dinge nicht logisch sind. Für mich der Inbegriff totaler Frustration. Jedenfalls habe ich in der letzten Woche diverse Zeit mit Heulen (wörtlich) und Zähneklappern (nicht wörtlich) verbracht. Das ging soweit, dass ich letzten Freitag bei der Arbeit nur noch abwechselnd in mein Diabetestagebuch und auf meinen Monitor gestarrt habe und von letzterem durch ersteres total agbelenkt war. (Ich hätte mich krank schreiben lassen sollen.) Gestern habe ich mich nicht getraut, zu Mittag zu essen, weil ich nicht wusste, wieviel ich dafür spritzen soll.
Aber Frau L. ist echt fit. Sie hat logische Zusammenhänge erkannt, die ich nicht gesehen habe und auf das Naheliegende geschaut, das ich schon längst aus den Augen verloren hatte. (Ihr wisst, wie das ist, oder? Man schließt nach und nach alle möglichen Einflussfaktoren aus (Stress, Katheter, Faktoren, Basalrate), bis am Ende nur noch total abstruse Dinge übrigbleiben (Gewebsveränderungen, Insulinantikörper, Schwangerschaft).)
Jedenfalls haben wir jetzt die Basalrate abends und den BE-Faktor mittags geändert. Wenn das klappt, habe ich einen Plan, wie ich eventuell noch die Basalrate oder den BE-Faktor morgens anpassen kann und eine Option auf Änderung des Korrekturfaktors mittags. aber immer schön eins nach dem anderen. Ich bin ja mal gespannt, wie es heute läuft... gestern abend hatte ich zumindest keine Unterzuckerung.
6. September 2013
4. September 2013
Closed-Loop-Studie Teil III
So, heute beginnt der zweite Teil der Studie. Am Montag wurden mir schon die ganzen Utensilien per Kurier geschickt, da hab ich das CGMS natürlich sofort wieder angelegt, auch wenn das eigentlich erst heute fällig gewesen wäre. Aber wer verzichtet schon freiwillig auf soviele Daten!
Die Dana habe heute morgen wieder angelegt - und mich promt wieder darüber aufgeregt. Das System besteht aus dem gefüllten, mit Kappe verschlossenen Reservoir und einer Gewindestange, die von hinten an das Reservoir geklemmt und dann von einem kleinen Apparat auf die richtige Länge reingeschraubt wird. Dann wird das Reservoir mit der Gewindestange in die Pumpe eingesetzt. Schraubt man dann den Deckel auf die Pumpe, fliegt einem die Reservoirschutzkappe promt um die Ohren, weil die Gewindestange zu weit eingeschraubt ist - man drückt quasi mit dem Deckel das Reservoir auf die Gewindestange, und das Insulin macht sich nach oben Platz. Und kommt einem gleich mit der Kappe zusammen entgegen. Und wenn man nicht aufpasst, läuft es am Reservoir vorbei in die Pumpe, ein Zustand, den man eigentlich unbedingt vermeiden sollte. Haha.
Naja, und dann schraubt man den Luer-Lock-Schlauch auf. Also bei mir ist die Pumpe an die Hose geklemmt oder in der Hosentasche, in jedem Fall aber an einem Ort, wo ich viel mit den Händen unterwegs bin und der viel Bewegung ausgesetzt ist. Ob ein Schraubverschluss da so hält... ich weiß ja nicht. Abfallen tut er vielleicht nicht, aber wenn er sich lockert reicht das ja vielleicht schon um Luft rauszulassen. Ausserdem - das konnte ich heute beim Befüllen testen - ändert sich die Insulinsäule dann innerhalb des Schlauchs. Vielleicht verschiebt sich das Insulin so wenig, dass man nur im Milli-Einheiten-Bereich weniger Insulin bekommt (oder mehr, beim Wiederfestschrauben), aber besonders beruhigend finde ich es trotzdem nicht.
Die Dana habe heute morgen wieder angelegt - und mich promt wieder darüber aufgeregt. Das System besteht aus dem gefüllten, mit Kappe verschlossenen Reservoir und einer Gewindestange, die von hinten an das Reservoir geklemmt und dann von einem kleinen Apparat auf die richtige Länge reingeschraubt wird. Dann wird das Reservoir mit der Gewindestange in die Pumpe eingesetzt. Schraubt man dann den Deckel auf die Pumpe, fliegt einem die Reservoirschutzkappe promt um die Ohren, weil die Gewindestange zu weit eingeschraubt ist - man drückt quasi mit dem Deckel das Reservoir auf die Gewindestange, und das Insulin macht sich nach oben Platz. Und kommt einem gleich mit der Kappe zusammen entgegen. Und wenn man nicht aufpasst, läuft es am Reservoir vorbei in die Pumpe, ein Zustand, den man eigentlich unbedingt vermeiden sollte. Haha.
Naja, und dann schraubt man den Luer-Lock-Schlauch auf. Also bei mir ist die Pumpe an die Hose geklemmt oder in der Hosentasche, in jedem Fall aber an einem Ort, wo ich viel mit den Händen unterwegs bin und der viel Bewegung ausgesetzt ist. Ob ein Schraubverschluss da so hält... ich weiß ja nicht. Abfallen tut er vielleicht nicht, aber wenn er sich lockert reicht das ja vielleicht schon um Luft rauszulassen. Ausserdem - das konnte ich heute beim Befüllen testen - ändert sich die Insulinsäule dann innerhalb des Schlauchs. Vielleicht verschiebt sich das Insulin so wenig, dass man nur im Milli-Einheiten-Bereich weniger Insulin bekommt (oder mehr, beim Wiederfestschrauben), aber besonders beruhigend finde ich es trotzdem nicht.
31. August 2013
Closed-Loop-Studie Teil II
Nach dem eher objektiven Teil folgen in der Fortsetzung meine
persönlichen Erfahrungen und Sicht der Dinge:
Den Navigator zu benutzen fand ich super. Nett ist, dass man
mit allem Verbrauchsmaterial hinreichend ausgestattet wird, sodass ich noch
Testreifen übrig hatte, die in mein Freestyle passen. Nach insgesamt fast vier
Wochen mit dem Navigator (Eingewöhnungsphase+Vorphase+Testphase) fühlt man sich
ohne die ständige Info über die Zuckertrends nämlich etwas nackt, und da bin
ich doch ganz froh über ein paar mehr Teststreifen um zusätzlich zu messen. Ich
messe zum Beispiel im Moment immer nach den Mahlzeiten, was ich sonst
eigentlich nie getan habe. (Ist aber in der Testphase vorgeschrieben und bei
meinen komischen BE-Faktoren gerade auch eine echt gute Idee.)
Worum es mir geht:
Also erst mal: Geil, dass ich das machen kann. Allein schon
wegen der CGMS-Daten. Aber es ist auch einfach super spannend, eine neue
Therapiemöglichkeit in der Entwicklung zu sehen. Und ja, das ist es mir Wert
Urlaub und Überstundenzeiten zu opfern und ewig mit der Bahn in der Gegend rum
zu fahren.
Drangekommen bin ich, weil Profil mich noch in ihrer
Probandenkartei hatten und ich alle Auswahlkriterien erfülle – z.B. bereits
eine Insulinpumpe verwende und auch das für die Studie vorgeschriebene Insulin
benutze (Novo Rapid).
Da ich für Closed-Loop in der zweiten und Open-Loop in der
ersten Phase ausgelost wurde, ist die zweite Phase für mich die spannendere.
Aber trotzdem gibt es schon was zu berichten, denn auch ein ständiges CGMS ist
für mich eine neue Erfahrung. (Hatte bisher nur mal den zu meiner Veo passenden
Medtronic-Sensor für sechs Tage.) Und der Navigator ist ein total fancy Teil.
Also wirklich, bunte Graphiken und Klingeltöne. Mein Freund hat gefragt, ob es
auch Tetris oder Pong könnte – klare Antwort: So was ähnliches wie Pong, du
versuchst immer mit dem Punkt zwischen den beiden grünen Linien zu bleiben.
Die Geräte:
Da ich auch das Freestyle von Abbot benutze und da noch nie
Schwierigkeiten mit Messfehlern hatte, bin ich dem Navigator gegenüber
vielleicht etwas ge-bias-t. Teststreifenbeleuchtung ist hier Standard. ;-)
Außer bei sehr schnellen Richtungswechseln und BZ-Änderungen kann ich mich über
die Genauigkeit nicht wirklich beschweren – wenn das Teil mal um mehr als 30
Punkte daneben liegt, kann man es halt neu kalibrieren – um Trends mitzukriegen
ist es allemal genau genug. Nur der Sensorkleber ist doof: bei Wärme und
Bewegung löst er sich ziemlich schnell ab, aber wehe, man versucht ihn beim
regulären Wechsel abzumachen. Bei mir saß er so fest, dass ich mir fast Haut
mit abgerissen hab. Ok, ich übertreibe etwas. Aber nur etwas, war schon
ziemlich rot. Der Kleber hat auch noch so richtige Fäden gezogen, wo dann
hinterher so prima die bunten Fusseln vom T-Shirt dran bleiben. Oh Mann, ich
hätte Fotos machen sollen. :-D
Ein fast neuer Sensor - aber man sieht schon die dunklen Fussel-Klebe-Ränder
Die Pumpe Dana ist leider keine, die ich weiterempfehlen
würde. Allein das Befüllen des Reservoires ist so fehleranfällig, das sie für
mich außerhalb der Studie niemals in Frage käme. Auch von diesem
Luer-Lock-Verschluss bin ich immer noch nicht überzeugt. Ein Pluspunkt ist der
Klebstoff an den Kathetern, weil er für mich genau die richtige Mischung aus
fest und nicht zu klebrig hat.
Leider habe ich bei diesem Pong-Spiel ziemlich abge-loose-t.
Mein Diabetes hat beschlossen, mitten in der Vorphase rum zu spacken. Auf
einmal hatte ich BZs in den 300ern, völlig ohne Grund, aber gerne gefolgt von
heftigen Hypos. Dieser Zustand hat sich während der Testphase etwas
stabilisiert, aber im Großen und Ganzen sind meine Werte sonst doch
kontrollierter. Also, nicht unbedingt immer besser, aber nachvollziehbarer und
nicht so willkürlich. Was das für die Studie bedeutet, da bin ich mir nicht
ganz sicher. Wenn sich meine Werte nicht weiter stabilisieren und so bescheuert
bleiben, macht es insofern keinen Unterschied, als das die Situation in beiden
Testphasen vergleichbar bleibt. Wenn sie sich stabilisieren, würde das im direkten
Vergleich das Closed-Loop-System deutlich besser aussehe lassen, als es
eigentlich ist. Möglich, dass das statistisch hinterher nicht ins Gewicht
fällt, da man ja den Durchschnitt von 18 Probanden betrachtet. Auf der anderen
Seite waren meine Werte schon echt krass und 18 sind jetzt ja auch nicht so
viele…
Hier mal so ein Stück von einem momentan "typischen" Tag
Nett war es auch, zweimal am Tag mit der Studienärztin zu
telefonieren. Dass man das tut, ist im Protokoll so vorgeschrieben, aber wie
man es tut, steht nirgendwo. Jedenfalls hat sie nicht einfach nur angerufen und
gesagt: „Sie wissen ja, im Protokoll steht ich muss Sie anrufen… irgendwelche
besonderen Vorkommnisse? Nein? Dann danke, tschüss“, sondern sie hat sich
richtige ernsthaft erkundigt, ob es mir gut geht, mit mir besprochen, wie die
Werte waren und wie ich deswegen meine Therapie anpassen will, und sich auch
einfach so ein bisschen unterhalten. Das war einfach wirklich richtig nett.
Und ist mit ein Grund, dass ich mich auch
schon auf den zweiten Teil freue.
So und am nächsten Mittwoch fängt bereits die zweite Vorphase
an. Fortsetzung folgt!
Closed-Loop-Studie Teil I
Seit etwa Anfang des Monats nehme ich an einer Studie teil,
in der eine neue Therapiemöglichkeit getestet werden soll. Die Hälfte ist jetzt
rum und es gibt schon viel zu berichten. Um nicht dem „too long didn’t read“
anheim zu fallen, poste ich’s mal in mehreren Teilen.
Worum es geht :
Getestet werden soll ein Closed-Loop-Algorithmus. Dieser
wird mithilfe eines kleinen Laptops berechnet, der per Bluetooth CGMS-Daten
empfängt und per Bluetooth Befehle an die Studien-Insulinpumpe sendet. Der
Algorithmus steuert dabei aber nur die Basalrate, Mahlzeitenboli und Sport
müssen weiterhin vom Anwender/Probanden/Patienten übernommen werden.
Schließlich kann das Ding noch keine Gedanken lesen und hat immer den
Verzögerungsnachteil durch die Messung der Glukose im Unterhautfettgewebe und
die Wirkkurve des Insulins. Manche Dinge muss man da eben doch im Vorhinein
steuern.
Ablauf:
Getestet wird an insgesamt 18 Probanden in drei Ländern
(England, Deutschland, Österreich). Jeder Proband durchläuft zwei Testphasen,
davon eine mit und eine ohne Closed-Loop-System. Welche Phase zuerst kommt,
wird vorher ausgelost. Nach einem Trainingstermin bekommt man alle Geräte
(außer dem Closed-Loop-Teil) schon mal mit nach Hause, um sich damit vertraut
zu machen. (Das bedeutet also auch eine halbe zusätzliche Woche gratis
CGMS-Gebrauch.) Jede Testphase hat eine
siebentägige Vorlaufphase und beginnt danach mit einem stationären Tag in einer
Klinik, bzw. in Deutschland in einem Institut (Profil, Institut für
Stoffwechselforschung in Neuss). Danach lebt man sieben weitere Tage seinen
ganz normalen Alltag zu Hause – das ist der eigentliche Test.
01.08.
|
Trainingstermin
|
|
02.08.
|
Eingewöhnungsphase
|
11 Tage
|
13.08.
|
1. Vorphase
|
7 Tage
|
20.08.
|
1. Testphase (bei mir Open Loop), beginnend mit stationärem Tag
|
1 + 7 Tage
|
28.08.
|
Wash-out-Phase
|
7 Tage
|
04.09.
|
2. Vorphase
|
5 Tage
|
09.09.
|
2. Testphase (bei mir Closed Loop), beginnend mit stationärem Tag
|
1 + 7 Tage
|
17.09.
|
Abschlussuntersuchung
|
Die Geräte:
Das CGMS ist der Navigator von Abbot. Die Funkreichweite
beträgt ein paar mehr Meter (10 oder so). Die Studienpumpe ist die Dana. Beide
Geräte wurden vor allem deswegen ausgewählt, weil sie über Bluetooth
kommunizieren können. Den Closed-Loop-Laptop habe ich noch nicht genau gesehen,
ich weiß aber schon das Windows drauf läuft. (Na, ob das gut geht? ;-) ) Er ist
aber etwa so groß und so schwer wie ein dickes Taschenbuch würde ich schätzen.
Die Übertragungsreichweite beträgt leider nur etwa 3m, sodass man ihn
tatsächlich immer mit sich rumschleppen muss. Der Algorithmus wurde von der Uni
Cambridge entwickelt, die auch der Sponsor/Finanzier/Auftraggeber der Studie
ist.
Fortsetzung folgt!
Es ist mein Blog und ich mach hier was ich will
Wow, ich war schon seit einem Jahr nicht mehr hier. Hätte nicht gedacht, dass es so lang ist. Aber so ist es eben - manchmal interessiert mich meine Krankheit mehr, manchmal weniger. Manchmal will ich den Austausch mit anderen, will alles wissen und alles machen und manchmal nicht.
Was mich dazu bringt, mal wieder hier reinzuschauen, sind drei Dinge:
Was mich dazu bringt, mal wieder hier reinzuschauen, sind drei Dinge:
- Ich habe die DeDOC entdeckt. Ich wusste, dass es sie gibt, aber ich wusste nicht, dass sie so groß ist! Deshalb gibt's ab jetzt auch posts auf Deutsch.
- Ich nehme an einer klinischen Studie zum Testen von neuen Therapiemöglichkeiten teil, genauer gesagt einem Closed-Loop-System. Wenn das nicht berichtenswert ist, dann weiß ich es auch nicht.
- Im Moment bin ich ganz motiviert mich um meinen D zu kümmern, und Austauschen und neue Kontakte knüpfen würde ich (mich) gerade auch gern.
22. August 2012
Meter Accuracy
Probably preaching to the choir with this post, but still:
I test twice with my meter every time I have a result >250. Sometimes the variations are huge, one example from last week: 428 mg/dl vs. 303 mg/dl. In this case, the deviation from the true value (which of course I don't know) has to be at least 17%. (Interested in the math? See below*.)
Meters in Germany, as well as in the US, need to have a deviation of no more than 20% (only ~60% of the approved meters on the German market even fulfill this standard).
Well, I still use my usual correction scale and it works fine, as long as I use the average of my two tests to calculate it! If I know that my high reading is due to a miscalculated meal or a skipped bolus, there is no reason for ketones or anything else which would give reason for a different correction scale. And even if there was, does any of you have one??? I certainly don't.
Using the normal correction scale on a reading that might be easily 60 points above my actual blood sugar, means that I will most likely end up with a reading 60 points below my aim. So at 40 mg/dl!
Dear pharmaceutical industry: A low like that can be life threatening, so don't tell me a 20% deviation does not lead to changes in therapy decisions! Even smaller deviations do!
With the tight control a lot of diabetics try to obtain, 15% or even 20% deviation are too much to fit our needs. I don't care whether my meter needs only small drops of blood, is quick and small, can be attached to an ipod, sends data to my pump, has background light, comes in pink or can sing songs: If it doesn't fit my needs of accuracy, it's not better than its predecessor! You are producing meters for 20 years now, and there is hardly any real progress in this area.
Also keep in mind, that the guaranteed deviation only has to be kept in 95% of the tests. So in the other 5% my values can be of by 30% or whatever.
And don't you dare shifting the blame to the patients for not washing their hands and whatnot! A lot of the patients are very thorough with their testing routine and it would be a shame not to improve meter accuracy because of the patients who wouldn't make use of it. Also, if your meters don't pass the on-road test that's not the patients fault but something you should put some serious R&D into.
As said before, I'm probably preaching to the choir here. But in my opinion it can't be stressed enough: Something has to happen in terms of meter accuracy, otherwise all of the other diabetes gizmos are useless!
Fine-tuning my pumps basal rates? Ha!
Hopefully I can follow-up this post with another one about meter accuracy soon, but I first need to find some additional information about the subjact-matter.
*If 428 is 12% above the true value, the true value is 428/112*100, because 428 are 112% of the original value. True value: 382
If 303 is 12% below the true value, the true value is 303/88*100, because 303 are 88% of the original value. True value: 344
As you see, the upper value is still above the lower value, after calculating in a 12% deviation. This means, the deviation has to be larger. As you can see in the small table below, I tried this for increasing deviations, and only at 17% deviation the upper value matches the lower value. This means, I might have had a blood sugar of 365mg/dl.
With a deviation of 20%, my bs could have been between 357 and 379.
upper lower deviation
382 344 12%
379 348 13%
375 352 14%
372 356 15%
369 361 16%
366 365 17%
⁞ ⁞ ⁞
357 379 20%
I test twice with my meter every time I have a result >250. Sometimes the variations are huge, one example from last week: 428 mg/dl vs. 303 mg/dl. In this case, the deviation from the true value (which of course I don't know) has to be at least 17%. (Interested in the math? See below*.)
Meters in Germany, as well as in the US, need to have a deviation of no more than 20% (only ~60% of the approved meters on the German market even fulfill this standard).
Edit: Somebody pointed out to me, that this sentence is contradictory in itself. (Thank you, Holger.) So let me elaborate: Meters in the EU need to have an CE certificate, which officially requires the fulfillment of the ISO norm 15197:2003 (deviations
<20% or <15mg/dl for BS <75 mg/dl). But this certificate is merely a statement by the manufacturer (or the importer), that the meter fulfills
the standard European regulations. Nobody checks who checked for the fulfillment of the ISO norm (e.g. the manufacturer). The CE certificate can be issued by a
lot of so-called Notified Bodies
in the EU.
A study by the university of Ulm lead by Dr. Freckmann and published in 2009 showed that actually only 60% of the meters in Germany fulfill the ISO norm.
The manufacturers argument to legitimate low meter accuracy usually is, that with this deviation no decisions in your diabetes therapy change, and that for high blood sugars usual correction scales can't be used anymore anyway, due to changed metabolic processes. (Or at least that's what meter company representatives told my at an expo.)A study by the university of Ulm lead by Dr. Freckmann and published in 2009 showed that actually only 60% of the meters in Germany fulfill the ISO norm.
Well, I still use my usual correction scale and it works fine, as long as I use the average of my two tests to calculate it! If I know that my high reading is due to a miscalculated meal or a skipped bolus, there is no reason for ketones or anything else which would give reason for a different correction scale. And even if there was, does any of you have one??? I certainly don't.
Using the normal correction scale on a reading that might be easily 60 points above my actual blood sugar, means that I will most likely end up with a reading 60 points below my aim. So at 40 mg/dl!
Dear pharmaceutical industry: A low like that can be life threatening, so don't tell me a 20% deviation does not lead to changes in therapy decisions! Even smaller deviations do!
With the tight control a lot of diabetics try to obtain, 15% or even 20% deviation are too much to fit our needs. I don't care whether my meter needs only small drops of blood, is quick and small, can be attached to an ipod, sends data to my pump, has background light, comes in pink or can sing songs: If it doesn't fit my needs of accuracy, it's not better than its predecessor! You are producing meters for 20 years now, and there is hardly any real progress in this area.
Also keep in mind, that the guaranteed deviation only has to be kept in 95% of the tests. So in the other 5% my values can be of by 30% or whatever.
And don't you dare shifting the blame to the patients for not washing their hands and whatnot! A lot of the patients are very thorough with their testing routine and it would be a shame not to improve meter accuracy because of the patients who wouldn't make use of it. Also, if your meters don't pass the on-road test that's not the patients fault but something you should put some serious R&D into.
As said before, I'm probably preaching to the choir here. But in my opinion it can't be stressed enough: Something has to happen in terms of meter accuracy, otherwise all of the other diabetes gizmos are useless!
15 years of developement and I don't see a difference. |
Fine-tuning my pumps basal rates? Ha!
Hopefully I can follow-up this post with another one about meter accuracy soon, but I first need to find some additional information about the subjact-matter.
*If 428 is 12% above the true value, the true value is 428/112*100, because 428 are 112% of the original value. True value: 382
If 303 is 12% below the true value, the true value is 303/88*100, because 303 are 88% of the original value. True value: 344
As you see, the upper value is still above the lower value, after calculating in a 12% deviation. This means, the deviation has to be larger. As you can see in the small table below, I tried this for increasing deviations, and only at 17% deviation the upper value matches the lower value. This means, I might have had a blood sugar of 365mg/dl.
With a deviation of 20%, my bs could have been between 357 and 379.
upper lower deviation
382 344 12%
379 348 13%
375 352 14%
372 356 15%
369 361 16%
366 365 17%
⁞ ⁞ ⁞
357 379 20%
29. Juli 2012
My Ice Cream Diabetes
My CDE recently told me, that brittle diabetes is not only a generally used description of hard to control T1D (as is mine but I think that's just because I'm really sensitive to... a lot of things), but actually an official term in the International Statistical Classification of Diseases by the WHO.
My first association with the word brittle though, is this:
Sometimes diabetes makes me chuckle.
And then my roommate said yesterday, when I finished a basal rating test with a flat line of numbers: "Seems even your macadamia caramel diabetes is nice sometimes". He had me bursting into laughter. :D
My first association with the word brittle though, is this:
![]() |
| Bolus worthy. |
Sometimes diabetes makes me chuckle.
And then my roommate said yesterday, when I finished a basal rating test with a flat line of numbers: "Seems even your macadamia caramel diabetes is nice sometimes". He had me bursting into laughter. :D
22. Juni 2012
Juice
Sometimes it's just so friggin frustrating.
"Anybody wants juice?"
Yeah, sure. But I can't just say yes, like you do. It means I have to leave the room to get my test kit and do a blood check. Than make a decision whether I want to bolus for this and take the risk of trouble with my sugars or just leave it. And if I decide to take the risk, I take a risk drinking friggin' juice!
"No, thanks."
I reconsiderd than, because I won't have diabetes stop me from doing anything. I checked, bolussed and drank the juice. But it really gets to me, that it isn't just the enjoyment it seems to be for everyone else around me.
"You know I can count the litres of OJ I drank within the last 15 years probably with the fingers of one hand?" - "Oh. I coundn't."
And that happend right after I had to eat something - despite having no desire of even eating chocolate - just to be able to bike up a hill.
Worst thing is, they don't get it. So frustrating. I know you do though, so thanks for listening(reading).
P.S.: Oh, and for dinner was risotto (~106g carbs/serving) and ice cream (~76g carbs/serving). Need I say more?
"Anybody wants juice?"
Yeah, sure. But I can't just say yes, like you do. It means I have to leave the room to get my test kit and do a blood check. Than make a decision whether I want to bolus for this and take the risk of trouble with my sugars or just leave it. And if I decide to take the risk, I take a risk drinking friggin' juice!
"No, thanks."
I reconsiderd than, because I won't have diabetes stop me from doing anything. I checked, bolussed and drank the juice. But it really gets to me, that it isn't just the enjoyment it seems to be for everyone else around me.
"You know I can count the litres of OJ I drank within the last 15 years probably with the fingers of one hand?" - "Oh. I coundn't."
And that happend right after I had to eat something - despite having no desire of even eating chocolate - just to be able to bike up a hill.
Worst thing is, they don't get it. So frustrating. I know you do though, so thanks for listening(reading).
P.S.: Oh, and for dinner was risotto (~106g carbs/serving) and ice cream (~76g carbs/serving). Need I say more?
22. Mai 2012
Mostly about thigh sites
I don't want to use a bullet list, but I want to talk about different things today. Here we go!
First of all, thanks to Karen for the wonderful DBlogWeek! I had a lot of fun and remembered why writing is fun in the first place. Also I read a lot of blogs I wouldn't have come across otherwise. You'll probably see some of seem in my blogroll soon (that is, when I update it, which will be after reading a lot more posts from last week).
Secondly, I was thinking about changing my insulin pump site to my thigh today. I've never done it before, but I know a lot of PWDs have made good experiences with them. And I feel I run out of space on my belly, hipps and lower back. I change my set about every three days and I use about *gets up, undresses half, tries to count the last little red spots and favorite places for cannulas around her body middle, redresses and continues to write* 16 or so different places, rotating counter-clockwise, so every spot is used only about every 48 days. But I can see a little red dot left behind for two weeks after I removed the cannula. And that has me wondering how much damage it does to my tissue. Long story short: I'd like to conquer new areas in my body for sites. And I wanted to try my thighs today. But I was hesitant - there are so many blood vessels in my legs, that I can see shine through my skin. I also like to place a set where I can take a skin fold between my fingers - heritage of old school MDI days - and for me that's difficult with my thighs, for some reason (which is not me being skinny). It feels more secure to me. I did shots in my thighs too, but that's a long time ago and they always had the tendency of bleeding more often then belly or buttock shots.
In the end I choose to use my belly again, because there'll be a performance of my jazz dance group tomorrow and I don't want the set to show through the leggings of the costume and I wanted to be on the save side with moving and all that jazz. But I still want to give thigh sites a try. If any of you could dispel my doubts or has words of encouragement to offer, they are greatly appreciated. I'd love to be able to bring myself to try thigh sites.
Third, my outfit today. If that isn't advocating for diabetes, I don't know what is. ;-)
First of all, thanks to Karen for the wonderful DBlogWeek! I had a lot of fun and remembered why writing is fun in the first place. Also I read a lot of blogs I wouldn't have come across otherwise. You'll probably see some of seem in my blogroll soon (that is, when I update it, which will be after reading a lot more posts from last week).
Secondly, I was thinking about changing my insulin pump site to my thigh today. I've never done it before, but I know a lot of PWDs have made good experiences with them. And I feel I run out of space on my belly, hipps and lower back. I change my set about every three days and I use about *gets up, undresses half, tries to count the last little red spots and favorite places for cannulas around her body middle, redresses and continues to write* 16 or so different places, rotating counter-clockwise, so every spot is used only about every 48 days. But I can see a little red dot left behind for two weeks after I removed the cannula. And that has me wondering how much damage it does to my tissue. Long story short: I'd like to conquer new areas in my body for sites. And I wanted to try my thighs today. But I was hesitant - there are so many blood vessels in my legs, that I can see shine through my skin. I also like to place a set where I can take a skin fold between my fingers - heritage of old school MDI days - and for me that's difficult with my thighs, for some reason (which is not me being skinny). It feels more secure to me. I did shots in my thighs too, but that's a long time ago and they always had the tendency of bleeding more often then belly or buttock shots.
In the end I choose to use my belly again, because there'll be a performance of my jazz dance group tomorrow and I don't want the set to show through the leggings of the costume and I wanted to be on the save side with moving and all that jazz. But I still want to give thigh sites a try. If any of you could dispel my doubts or has words of encouragement to offer, they are greatly appreciated. I'd love to be able to bring myself to try thigh sites.
Third, my outfit today. If that isn't advocating for diabetes, I don't know what is. ;-)
Yeah, that's right. You see a belly site there.
And yes, I made the pic standing in front
of a mirror which is not entirely clean.
20. Mai 2012
DBlogWeek - Something good to eat wildcard
Today is wildcard time for me! I'd like to share with you a recipe I cooked for my last birthday party. As I supposed beforehand some of the guests loved it, while others stated it to be not their cup of tea. But as it is very low carb, prepared within 20 minutes and can be done by anyone no matter how small the cooking skills, I thought it's the right recipe to share with you! (I loved it, too.)
It's actually a traditional medieval dish, from the 14th century. I got it from here, made just small modifications and take the freedom to translate it for you.
Blanc manger - for 4 servings
You will need:
600 gr chicken breast
300 gr peeled and grounded almonds
30 gr butter
30 gr rice flour (you can ground rice e.g. with a coffee mill)
100ml dry white wine (or to taste)
artificial sweetener, equivalent to 60-75 gr of sugar
dash of salt
Cut the chicken into bite-sized pieces and cook them in boiling water for 10-15 minutes.
In the meantime, prepare a mush from the almonds, 900 ml water and the white wine. Puree it with a blender. (You can substitute more from the water with wine, if you like, but I wouldn't recommend more than 300 ml of wine, the taste gets quite intrusive then.)
Strain the chicken, then add almond mush and butter. Bring it to a boil, than add the rice flour to thicken it.
Add the artificial sweetener and a dash of salt (not more!).
Contains: 2718 kcal/11375 kJ, 192 gr of fat, 35 gr of carbs, 203 gr of proteins
Per serving: 680 kcal/2843 kJ, 48 gr of fat, 9 gr of carbs, 51 gr of proteins
If you haven't realized it yet: This is a sweet dish with chicken - a little unusual - and it is not the french pudding. You can see it in the large pot in the front, surrounded by a lot of other medieval dishes! It looks more liquid in the pic than it actually is, though. Enjoy!
It's actually a traditional medieval dish, from the 14th century. I got it from here, made just small modifications and take the freedom to translate it for you.
Blanc manger - for 4 servings
You will need:
600 gr chicken breast
300 gr peeled and grounded almonds
30 gr butter
30 gr rice flour (you can ground rice e.g. with a coffee mill)
100ml dry white wine (or to taste)
artificial sweetener, equivalent to 60-75 gr of sugar
dash of salt
Cut the chicken into bite-sized pieces and cook them in boiling water for 10-15 minutes.
In the meantime, prepare a mush from the almonds, 900 ml water and the white wine. Puree it with a blender. (You can substitute more from the water with wine, if you like, but I wouldn't recommend more than 300 ml of wine, the taste gets quite intrusive then.)
Strain the chicken, then add almond mush and butter. Bring it to a boil, than add the rice flour to thicken it.
Add the artificial sweetener and a dash of salt (not more!).
Contains: 2718 kcal/11375 kJ, 192 gr of fat, 35 gr of carbs, 203 gr of proteins
Per serving: 680 kcal/2843 kJ, 48 gr of fat, 9 gr of carbs, 51 gr of proteins
If you haven't realized it yet: This is a sweet dish with chicken - a little unusual - and it is not the french pudding. You can see it in the large pot in the front, surrounded by a lot of other medieval dishes! It looks more liquid in the pic than it actually is, though. Enjoy!
19. Mai 2012
DBlogWeek - Saturday Snapshots
I don't have that many D-related pictures (yet), and I don't have any new at all. So I'll just show you two old ones (from this and that post):
|
Spots, gushers, smearings - you know you're a diabetic when blood is everywhere. |
|
My warning to double-double-double check my set
when I have stubbornly high blood sugars next time.
|
Also, ya know ('cause it sums up my day quite well):
18. Mai 2012
DBlogWeek - What They Should Know
Woah. I think this topic has been written about a lot and at length by the DOC already. No reason not to do it again! There are still a lot of people who don't know even the basics of diabetes. But seeing how little the average person knew about diabetes 15 years ago, they know a lot today. Most people you ask will know a friend/family member/acquaintance/acquaintance of a family member/... with either Type 1 or Type 2. But there are still a lot of misconceptions, of course. I try to educate every time it seems appropriate. I try to educate my friends, coworkers and children (I work as a teacher at the moment, so "my" children). But even those who already know a good deal about treatment of diabetes are often missing a few important things:
- Living with diabetes is not easy. But it's also not terrible. Short answer is: It depends. Some days everything goes smooth, it's just routine, I don't even realize all the diabetes stuff I'm doing along the way. But some days, diabetes is a bitch. It needs all of my attention, has me bustle all over, and doesn't give me a break at all. It drives me crazy. It drives me to tears. Some days, I'm not in the mood for pasta for dinner, because I'm too tired of thinking about complicated bolusing.
- You can live a good life with diabetes. But nobody guarantees you the healthy future everyone else takes for granted. Of course, luck/genes/fate is probably playing a huge role in this as well, people can suffer from very different conditions at the same age independent of live style, diabetes, etc. But still. As a PWD, I never know when the first long term complications may hit me. And this has me in fear.
- Diabetes makes me very self-aware of my body. Just a few examples here: I never got wasted to a blackout. And that is not only because of a fear of losing control, it's mostly because I'm just not able to drink enough alcohol while repressing the feeling of losing control. I'm also very self-aware when it comes to stress, which is probably good, because it keeps me from having a hypothetic burn-out. It also keeps me from pushing my boundaries, though.
17. Mai 2012
DBlogWeek - Fantasy Diabetes Device
We already have pumps and CGMs, and even pumps without tubing and there are chances that we're gonna have a closed loop system within the next 10 - no wait, make that 20... or maybe better 30 - years. A closed loop system, injecting glucose as easily as insulin, testing bloodsugars and reacting so quickly, that you're completely free of thinking about the D - that would be magical. And it should look like a watch. I mean, think about it, it makes sense: Your blood vessels can be easily reached from there, with whatever technique, and in the improbably case of emergency it would also serve as an diabetic alert bracelet.
Also I'm regularly using my pump as a watch already.
Would look like this and pro'ly be called GlucoWatch (because sometimes I'm not as creative as I'd like to be):
Also I'm regularly using my pump as a watch already.
Would look like this and pro'ly be called GlucoWatch (because sometimes I'm not as creative as I'd like to be):
Photo stolen from tokyoflash, check them out,
they have a lot of futuristic looking watches!
16. Mai 2012
DBlogWeek - One Thing to Improve
There are certainly a lot of things I could improve in my diabetes management. For example, I really should start logging again. I know I do better when I have the feedback and the "stick to it!"-reminder from my small, blood stained, number filled ring binder.
But Karens description of the topic also says "Why not make today the day we start working on it". Therefore I think I should pick some smaller improvement, something taking less effort, so chances are higher I don't give my resolution up next time it gets difficult to stick to it. One small step at a time, you know.
So let's see, what else have we got:
...
Ah, screw it, I'll start logging again. I know it's a pain in the behind, but for goodness sake, it's the easiest way to controll all of the other stuff! How else would I go through with them, if I didn't log?
Also, I've done it before. Can't be that hard. What do they say, 30 days to make or break a habit? Let's see, if I can do it. Ehm, I mean of course: I can do it!
But Karens description of the topic also says "Why not make today the day we start working on it". Therefore I think I should pick some smaller improvement, something taking less effort, so chances are higher I don't give my resolution up next time it gets difficult to stick to it. One small step at a time, you know.
So let's see, what else have we got:
- Not eating between meals. Cause eating between meals leads to bloodsugar spikes between meals, which are not good for my A1c.
- Bolusing well ahead. Instead of bolusing while I'm already eating. If I would do that, I probably would have way less problems with the bullet above. It's those spikes, that I never catch with my meter (one of the things for which a CGM would be great) and which have my A1c above 7 in the end, I'm sure.
- Changing out my lancets more often. Haha.
- Changing my sets every three days instead of "every three or four days, depending on my mood and remembering the date".
...
Ah, screw it, I'll start logging again. I know it's a pain in the behind, but for goodness sake, it's the easiest way to controll all of the other stuff! How else would I go through with them, if I didn't log?
Also, I've done it before. Can't be that hard. What do they say, 30 days to make or break a habit? Let's see, if I can do it. Ehm, I mean of course: I can do it!
15. Mai 2012
DBlogWeek - One Great Thing
Today the DBlogWeek topic is one great thing we are good at concerning diabetes.
I think I do well with most of the diabetes stuff, really - except I freak out to often -, but in all aspects of my diabetes management slip-off's happen from time to time. So there is probably nothing I will do right all the time.
The one thing I do great about diabetes is thinking of everything. When I want to bolus for a meal, I think about
Of course, all this considerations do not necessarily lead to the desired result. But sometimes they do, and this is what I call success.
I think I do well with most of the diabetes stuff, really - except I freak out to often -, but in all aspects of my diabetes management slip-off's happen from time to time. So there is probably nothing I will do right all the time.
The one thing I do great about diabetes is thinking of everything. When I want to bolus for a meal, I think about
- carb count,
- bloodsugar,
- most probable blood sugar trend at the moment,
- insulin on board,
- basal rate glitches during the last few days,
- possible and/or planned exercise/action of any kind coming,
- most recent/next to come set change,
- fat-protein-units,
- possible sickness and/or menstruation,
- ...
Of course, all this considerations do not necessarily lead to the desired result. But sometimes they do, and this is what I call success.
14. Mai 2012
DBlogWeek - Find A Friend
Welcome everybody who got here via Karens inititive! (And everybody else of course.) I never did something like this before, so I'm not sure weather I will find the time to blog everyday, but I'll try.
When I read through the list of topics for DBlogWeek I realized that the first topic is probably the one I have the least of an idea about what to write. The problem is this: Most of the blogs I read, you will already know. They are not that many and they are widely known in the DOC. You can look them up in my blogroll. All of them inspired me to start blogging, and all of them provided support and company, so to speak, when I started to look for other Type 1s online. But than I found something thanks to Jess' "Best of the 'betes blogs" post: Alexis Pollak writing at her blog I run on Insulin.
I haven't read it front to back yet. But from what I've seen so far, I already love it: It is witty, true and well written. And most importantly, it comes from somebody about my age and even with a similar diagnosis story - somebody with whom I can identify and have the feeling of "can take the words out of my mouth". And now, take action and check out her blog: I run on Insulin by Alexis Pollak.
When I read through the list of topics for DBlogWeek I realized that the first topic is probably the one I have the least of an idea about what to write. The problem is this: Most of the blogs I read, you will already know. They are not that many and they are widely known in the DOC. You can look them up in my blogroll. All of them inspired me to start blogging, and all of them provided support and company, so to speak, when I started to look for other Type 1s online. But than I found something thanks to Jess' "Best of the 'betes blogs" post: Alexis Pollak writing at her blog I run on Insulin.
I haven't read it front to back yet. But from what I've seen so far, I already love it: It is witty, true and well written. And most importantly, it comes from somebody about my age and even with a similar diagnosis story - somebody with whom I can identify and have the feeling of "can take the words out of my mouth". And now, take action and check out her blog: I run on Insulin by Alexis Pollak.
10. April 2012
Five minute creativity
I read Karen's post from yesterday, followed her link and was hooked. So here's my reminder for cases of inexplicable high blood sugars when I can't wait for them to come down (which is mostly the case as inexplicable high blood sugars drive me slightly mad).
22. Januar 2012
133
Parties always wreck havoc on my bloodsugars. I try to guestimate carbs, but I usually loose track or underestimate the amount of carbs and then end up around 300. Always. I don't really get why, because I try every single time to make it better than last time, but it doesn't work out. So in this respect, parties are no fun for me.
Yesterday I came back from a birthday party at around 2 a.m. and tested before I got to bed. 133. And half a unit of IOB to bring me right back to my target of 100.
I'm speechless. This is huge! I'm still dancing through the flat singing "133! 133!" :D
Yesterday I came back from a birthday party at around 2 a.m. and tested before I got to bed. 133. And half a unit of IOB to bring me right back to my target of 100.
I'm speechless. This is huge! I'm still dancing through the flat singing "133! 133!" :D
17. Januar 2012
Protest
My way to vent today. I have been really angry with my diabetes and then there's not even somebody responsible to whom you can complain. Arrgh. So I wrote this letter to... whom it may concern. German version below, because English officialese really isn't my strong suit.
Dear Sir or Madam,
hereby I would like to enter a protest. A protest against the fact that on Thursday, 17th of January, 2012, I have not been allowed to eat pudding.
I would first like to say that I eat pudding as joyous as any other person. While other people not even waste a thought on what they are just cramning into their mouths though, let alone thinking of its ingredients and their subsequent metabolic processes, my case is somewhat more complicated.
Now to the events of the aformentioned day: Due to a completely to me inexplicable and unknown event in the course of this day, my blood glucose levels showed a nonstandard high reading of 308 mg/dl at 6 p.m.. Despite my intervention by means of an insulin injection, my blood glucose levels only decreased to 259 mg/dl during the next two hours and therefore still far from the normal range. With regard to my health and to prevent a metabolic crisis in the sequel of the evening I was forced to act against my wishes and hunger and to prescind from the consumption of sweet and comforting foods despite peer effect and imminent social dissociation.
This decision moved me deeply and painfully. Particulary the unattainability of a responsible body to whom I can enter a protest is not beneficial to my emotional stability.
Sincerely yours.
Vera, type I diabetic
-------------------------------------------------------
Sehr geehrte Damen und Herren,
hiermit möchte ich offiziellen Protest einlegen. Protest dagegen, dass es mir am Dienstag, den 17.01.2012, 20:00 Uhr, nicht gestattet war, Pudding zu essen.
Lassen Sie mich vorausschicken, dass ich Pudding genauso gerne esse, wie jede andere Person. Während andere Menschen jedoch noch nicht einmal einen Gedanken daran verschwenden, was sie gerade in ihren Mund stopfen, geschweige denn an die Inhaltsstoffe und darauffolgenden Stoffwechselprozesse, die in ihrem Körper ausgelöst werden, liegt der Fall bei mir komplizierter.
Nun zu den Ereignissen des benannten Tages: Aufgrund eines mir völlig unerklärlichen und unbekannten Ereignisses im Verlauf des Tages, wies mein Blutzucker um 18:00 Uhr eine nicht normgerechte Höhe von 308 mg/dl auf. Trotz meines Eingreifens mittels einer Insuliinjektion, war der Blutzzucker zwei Stunden später lediglich auf 259 mg/dl gesunken und damit immer noch weit ab von der Norm. Mit Rücksicht auf meine Gesundheit und zur Vermeidung von Stoffwechselentgleisungen im weiteren Verlauf des Abends, war ich deswegen gezwungen, von dem Konsum süßer und wohliger Nachspeisen gegen meinen Willen und Hunger und trotz Gruppeneinfluss und drohender sozialer Abgrenzung, Abstand zu nehmen.
Diese Entscheidung hat mich schmerzlich berührt. Insbesondere ist die schwere Erreichbarkeit eines verantwortlichen Gremiums zum Erheben von Protest meiner emotionalen Ausgeglichenheit nicht zuträglich.
Mit freundlichen Grüßen
Vera, Typ I Diabetikerin
Dear Sir or Madam,
hereby I would like to enter a protest. A protest against the fact that on Thursday, 17th of January, 2012, I have not been allowed to eat pudding.
I would first like to say that I eat pudding as joyous as any other person. While other people not even waste a thought on what they are just cramning into their mouths though, let alone thinking of its ingredients and their subsequent metabolic processes, my case is somewhat more complicated.
Now to the events of the aformentioned day: Due to a completely to me inexplicable and unknown event in the course of this day, my blood glucose levels showed a nonstandard high reading of 308 mg/dl at 6 p.m.. Despite my intervention by means of an insulin injection, my blood glucose levels only decreased to 259 mg/dl during the next two hours and therefore still far from the normal range. With regard to my health and to prevent a metabolic crisis in the sequel of the evening I was forced to act against my wishes and hunger and to prescind from the consumption of sweet and comforting foods despite peer effect and imminent social dissociation.
This decision moved me deeply and painfully. Particulary the unattainability of a responsible body to whom I can enter a protest is not beneficial to my emotional stability.
Sincerely yours.
Vera, type I diabetic
-------------------------------------------------------
Sehr geehrte Damen und Herren,
hiermit möchte ich offiziellen Protest einlegen. Protest dagegen, dass es mir am Dienstag, den 17.01.2012, 20:00 Uhr, nicht gestattet war, Pudding zu essen.
Lassen Sie mich vorausschicken, dass ich Pudding genauso gerne esse, wie jede andere Person. Während andere Menschen jedoch noch nicht einmal einen Gedanken daran verschwenden, was sie gerade in ihren Mund stopfen, geschweige denn an die Inhaltsstoffe und darauffolgenden Stoffwechselprozesse, die in ihrem Körper ausgelöst werden, liegt der Fall bei mir komplizierter.
Nun zu den Ereignissen des benannten Tages: Aufgrund eines mir völlig unerklärlichen und unbekannten Ereignisses im Verlauf des Tages, wies mein Blutzucker um 18:00 Uhr eine nicht normgerechte Höhe von 308 mg/dl auf. Trotz meines Eingreifens mittels einer Insuliinjektion, war der Blutzzucker zwei Stunden später lediglich auf 259 mg/dl gesunken und damit immer noch weit ab von der Norm. Mit Rücksicht auf meine Gesundheit und zur Vermeidung von Stoffwechselentgleisungen im weiteren Verlauf des Abends, war ich deswegen gezwungen, von dem Konsum süßer und wohliger Nachspeisen gegen meinen Willen und Hunger und trotz Gruppeneinfluss und drohender sozialer Abgrenzung, Abstand zu nehmen.
Diese Entscheidung hat mich schmerzlich berührt. Insbesondere ist die schwere Erreichbarkeit eines verantwortlichen Gremiums zum Erheben von Protest meiner emotionalen Ausgeglichenheit nicht zuträglich.
Mit freundlichen Grüßen
Vera, Typ I Diabetikerin
2. Januar 2012
Stupid.
I'm so stupid. Stupid as in eating a hole lot of cookies without even realizing it, than testing a blatant 455 afterwards and having to inject a scary amount of insulin. Scary because, as we all know, large amounts of insulin usually can be really dangerous. Guess I can only sit it out now. It's my own stupid fault. Knowing that still doesn't stop the situation from giving me the creeps, unfortunately.
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