15. November 2011

World Diabetes Day (with brackets)

"Can I use your computer when you're done?"
"It's late. Do you need to do it today?"
"Well, the 14th is only today and I wanted to blog."
"Oh! Sorry, you told me and I forgot. Do you, like, say anything [for World Diabetes Day]?"

My boyfriend is a cutie. (I told him to say "I want a cure".)

My version of the Big Blue Test:
I planned to test and then to climb a moutain by bike. (Ok, it's more a hill but still, it's always a fight. By now I have enough training to beat it on a regular basis though. (That means I am no longer forced to get off and push the bike.)) And then test again. Unfortunately, when I tested before mounting the bike I caught a 45. That's right. Good I checked, not good to climb a mountain. I treated my low and then started to freewheel (as far as terrain allowed). When it was (about) 14 minutes later I tested again: 70. Stopping to test (and to tranquilize my phone) I realized that my nose was running and I didn't have any tissues and that I had just cracked a fingernail.

I don't now if you are familiar with the moment during or shortly after a low, where you get emotional (or irrational) for no apparent reason and small annoying things can make you burst into tears of frustration?

This didn't happen to me today. But it could have. (And in this case, the roommates of my boyfriend would have gotten a huge package of diabetes awareness, in terms of swearing.) Thinking of that while staring at my cracked fingernail, I also remembered how unfair I still think it is, that I cannot ride up a friggin hill, without thinking about all kinds of stuff - blood sugar, insulin on board, last meal, time (very important in my case - while sports in the morning hours does absolutely nothing to my glucose levels, sports in the evening with active insulin can leed to major lows within a few minutes).

I started to climb the mountain. Slowly. Very slow. So slow actually, that my bike dared to topple over. I now, it sounds like a mistake, but I had taken precautions according to the factors named above (that is, taking only a half bolus for the last meal, but of course I could not anticipate the low...). Another (about) 14 minutes later I had beaten the hill, but of course also had ended up with another low (50).

My version of wearing Blue
Ok, I explicitly wore blue today. (That is, I didn't do it by chance but on purpose. Somehow, I didn't manage to do it on Fridays yet.). I don't think anyone noticed. Two years ago, when I still was a lot more goth, people probably would have. I also wore my pump openly, instead of tucked into my jeans pocket as I usually do. (Just to be clear: I am very open with my diabetes and try to educate whenever possible.)

My version of the WDD Postcard exchange
Unfortunately, I did not yet receive a postcard. But seeing that it probably has to travel quite a distance around this beautiful globe, I think that's understandable. Meanwhile, I can show you what I dropped (a few weeks ago) to the letterbox. I hope it survived the trip to the US unharmed!

6. November 2011

Real People Sick and other Bits 'n' Pieces

  • I'm real people sick. I hate it. I don't feel human, because my head feels like a doll's head - all stuffed with cotton batting. It makes me and my blood glucose kind of cranky.
  • I took this pic some days ago. It's from the category "you know you're a PWD when..."
    Spots, gushers, smearings - you
    know you're a diabetic when blood is everywhere.
  • I participate in the World Diabetes Day Postcard Exchange organized by Lee Ann and I dropped my postcard the week before last. I hope it arrives on time and I'm so excitedly waiting for the reply!
  • I might be participating in a clinic study, which will be testing a Lantus-like insulin. The preliminary physical examination has yet to take place, but up to now everything sounds good and very interesting. I'll keep you updated!

25. Oktober 2011

Plan of Action needed

My A1c has been in the high sevens for quite a while now and while I am overall satisfied with my "compliance" and control, I'm eager to get to the next level of blood glucose control. Especially with my eye doctor appointment coming up in January, I want to be able to say "I really am doing everything that's possible". Because in case of a discouraging result I don't want to have to start working on my control when I am scared and frustrated already.

I think that a large part of my A1c has to be accounted to post-prandial spikes as those high's are the ones I don't catch. Unfortunately, before I can get started on tuning the distance of the space-time events "bolusing" and "eating" to give my insulin a head start, I have to guarantee that my basals are ok and that my bolus factors and correction factors are ok. (I think they are, but I need to check.)
My next blood work is scheduled for mid November. I guess I can figure out the prerequisites until than although I hate basal testing.

So the plan of action is as follows:
  1. Check your basals. Check your factors. Tweak if necessary. Complete task until November 16 (date of blood test).
  2. Vary time delay between bolusing and eating until post-prandials are in range. Complete task until January 26.
But this planning is of course the easy part. Everything's easy in theory. The hard part is: Start logging again. Be disciplined. Don't guestimate. Eat regularly. Try again, every day. Start now.

Hopefully this decleration of my goals will help to keep me accountable. I'd like to have smaller steps in my plan, like things to do or to improve for every week or so, but I'm not sure how to do that.

By the way, does any of you have experiences with fat-protein units? Is it worth the effort?

19. Oktober 2011

17. Oktober 2011

Venting and Ranting

I hate being sick. And I even more hate to be sick, when I'm don't know that I am. When I feel completely fine* and just my friggin bs gives a hint on the fact that something might not be okay. There's nothing I can do about it, other than treating the second bs over 300 mg/dl today and now also ketones. I'd like to eat something at some point!

I just feel so at the mercy and pretty vulnerable because I do not - cannot - understand what's happening inside me.
Also it's only few weeks since this happend the last time and I'm really fed up with this. At least this time I'm not frightend, I'm just angry.


-----------------
* By fine I mean fine despite the dry mouth, evolving hunger due to meal skipping and named emotions.

10. Oktober 2011

Glucocoaster

Often when I'm high, I know why (because I again couldn't keep track of all the tiny snacks I was eating at the party or because I couldn't hold my horses when drinking juicy cocktails with friends or because of overtreating lows) or I find it out later (when they don't budge for days and hours I'm probably sick, etc). Today, I didn't have a clue. But - and this is something noteworthy - I did not freak out over it. Nope. Even though I was scary high, I tested 406 and retested 509 mg /dl (yes, 20% accuracy is not enough). Just corrected for it via pen, changed my set (which had to be changed anyway but seemed to be fine) and then, admittedly impatient and unable to really concentrate on anything (else), waited for the sugars to come down. I did not rage bolus, in fact, I corrected for the 400 only and then again for the remaining 191 three hours later. Carefully. And now I'm at 61.

Glucocoasters. I haz them.


30. September 2011

Irish Philosophy

I found this in an irish pub tonight:


Totally made my day.

28. September 2011

Angst

I haven't been blogging in the last week, because it was a hard one and I didn't really know where to start. But Holly wrote this post which I can relate to a lot, and I think I'll try and start from there.

I'm a worrier as well. But it's worse. For some reason, especially around this time of the year (I'm suspecting some kind of winter depression), I tend to get panicked and freaked out about nothing. It usually starts with a health-trigger, like having a high bood sugar or eat something that can by poisonous in large quantities like beechnuts. When I say usually I mean that it happened first two years ago, but it reoccurred twice by now in a similar manner and the last time was last week.

Ok, so what happened?
Well. Sunday morning last week I had a high blood sugar. I treated it the whole day, correcting and correcting again, but it didn't budge a lot. During the day, I slowly increased my basal rate, first to 130%, than 160%, till I reached 180% on monday morning (as you probably can guess, I didn't sleep a lot during this night, but tested and wondered what the hell was going on). I had not had ketones to that point, but this was when I called my CDE. I was worried because my bodies increased need of insulin happend so fast, and if it would drop as quickly, I could end up with a major low. (That still is a sensible thought, right?) So together we checked for all kinds of pump/set failures (not finding any of course) and decided to drop the basal to "only" 150%. Her best guess was that my body  probably was fighting an infection or something. I ran some errands, not really feeling well but also not really being able to put my finger on it: I felt kinda sick, had a high pulse, I was cold... nothing so intense I couldn't have easily ignored it, though.
Two hours later I had 300 mg/dl and ketones of 2.8 mmol. (I have a meter to measure blood ketones, which is really useful.) This is when I panicked and called the medical practice of my CDE again, this time taking to my doctor. He recommended to follow the usual instructions for treating ketosis. He also offered to make an ECG to check up on my high pulse. 15 minutes later I was at the practice. I was feeling bad: My muscles were twitching from high tonicity and I felt week. But my ECG turned out very unremarkable. My doctor told my that there was no sign of me not being healthy but that my symptoms are those of a  —  panic attack.
I should go out, enjoy the beautiful weather and relax. Go have some ice cream (and bolus for it, of course). Amazingly enough, I was able to follow his advice. I guess I was so relieved that I'm physically ok, that I could calm down. And guess what? My symptoms disappeared within half an hour. My bloodsugar was down to 113 mg/dl within two more hours. (And then it was very low in the evening, but that wasn't really a surprise. )


So far so good. But. Since then I tend to experience angst, when my bloodsugar is out of order. I'm very uneasy about possible overtreating and high blood sugars. Which I still have, since I'm still battling an unknown infection which a basal rate of 130% and a lot of correction boluses. But I know that it is ridiculous. My doctor said: "Why are you worried? You've had diabetes for over 16 years, you know how to treat a high blood sugar." And he's obviously right, I've treated higher BS than that before. (And for the record, he's a great guy and he and the CDE both did and said the perfectly right things.)
I freaked out (and still am freaking out) and I do not even know exactly why. I know that it has been a lot worse two years ago and I now it's going to get better within a month or so. I'm feeling perfectly fine right now. Maybe there is something more underlying to all this. I don't know, and I'm not sure I want to know.
I am also not quite sure what the point of this post is other than getting it all out of my system. Pffffff...

21. September 2011

30 Things About My Invisible Illness

 Okay, I know I'm too late for National  Invisible Illness Awareness Week (September 12.-18.), but I'm also not in your nation. :P So here it goes:
  1. The illness I live with is: Diabetes mellitus type 1. (I cannot stress this enough. It's just so annoying when people, especially doctors, mix it up with type 2.)
  2. I was diagnosed with it in the year: 1994.
  3. But I had symptoms since: I didn't even notice my symptoms, my mom did.
  4. The biggest adjustment I've had to make is: Not being able to eat everything at every time.
  5. Most people assume: That everything is about the physical part (as opposed to the psychological).
  6. The hardest part about mornings are: Getting up. But that's nothing to do with the D.
  7. My favorite medical TV show is: I don't have a TV.
  8. A gadget I couldn't live without is: My meter.
  9. The hardest part about nights are: Not knowing if you assessed every possible influence on your bloodsugar correctly and will make it through the night without going low.
  10. Each day I take _ pills & vitamins: 1.
  11. Regarding alternative treatments: For diabetes? I don't think so. Other than that: If it works for you, it's fine, I haven't really tried it yet.
  12. If I had to choose between an invisible illness or visible I would choose: The invisible one. I like it that I can choose who knows about my D and that I can choose the time to reveal it.
  13. Regarding working and career: I can't be an astronaut ever. This sucks. It also seems that you cannot work with a pump at an MRT which equally sucks. Other than that there is not much of a connection between those topics.
  14. People would be surprised to know: How much time I spend thinking about D (i.e. how much time the D takes because you are forced to calculate carbs and stuff plus all of the emotional crap).
  15. The hardest thing to accept about my new reality has been: That it is forever.
  16. Something I never thought I could do with my illness that I did was: I was brought up with the conviction that I can do everything, so I never really thought there was anything I couldn't do (other than becoming an astronaut or surviving on an island Robinson Crusoe-style).
  17. The commercials about my illness: Usually don't cater to me but type 2's. They annoy me when they lump together type 1 and 2's.
  18. Something I really miss doing since I was diagnosed is: Not thinking about it (especially about how much I'm eating).
  19. It was really hard to have to give up: See 18.
  20. A new hobby I have taken up since my diagnosis is: All of my hobbies except reading, which I already loved when I was nine: dancing, crafting, singing, ...
  21. If I could have one day of feeling normal again I would: See 18. Maybe I would get really drunk, because I never dared to do that.
  22. My illness has taught me: Coenesthesia. (German readers: That is not Zönästesie, but Körpergefühl.)
  23. One thing people say that gets under my skin is: I could never do that. Really? Think again. (Of course you get that when you inject via syringes much more than when using a pump.) But often it's more their attitude than what they are actually saying.
  24. But I love it when people: Help, when help is needed, without too many questions. Are interested but without sensationalism; try to learn rather than to teach me or to get their prejudices/smattering confirmed.
  25. My favorite motto, scripture, quote that gets me through tough times is: You cannot predict everything. Some things are just happening. Don't try to persuade fate. (It varies depending on the occasion, but this is often the baseline.)
  26. When someone is diagnosed I'd like to tell them: It's overwhelming at first, but life goes on. You can do this.
  27. Something that has surprised me about living with an illness is: That after 16 years, it still is a lot of up and down - always swinging between routine and trouble. That might not sound surprising, but I wasn't anticipating it.
  28. The nicest thing someone did for me when I wasn't feeling well was: Surprising me with their attention.
  29. I'm involved with Invisible Illness Week because: Everybody else is and my pricked fingers itched to take part. I'm also new to the blogosphere so it might be interesting for my potential/future/hypothetical readers to know stuff like this about me.
  30. The fact that you read this list makes me feel: Wondering what it means to you.
I imagine that my answers to this questions vary with my feelings about diabetes a lot. And my feelings do vary a lot as well. Also there are of course a lot more questions needed to give you even an idea of what goes on in a PWD's (or PWotherinvisibledisease's) mind.

17. September 2011

...and I am not going to write fail

Ok, so yesterday was a good day, today is a crappy one. Maybe that's poetic justice or something, but I don't like it.

My BS today: 248 - good night!, I correct of course. 224 - good morning!, I correct. 306 - maybe a miscalculated cocoa, but that bad? I correct. 286 - an hour later, also moderate ketones, I get kinda panicky and change my pump site, but considering the insulin on board only give a tiny correction. 272 - I start correcting and test ketones again. My ketone meter (sic) says LO and for some reason that makes me check my BS again, which is 165 - I immediately stop the pump from delivering the rest of the correction bolus - and, check again, 159. WTF?? That's what you call off by 20%?? So glad I double checked that reading! Finally have dinner. I'm 145 just before writing the post.

Sometimes diabetes sucks. There is no way denying it. But I'm not going to consider this day a fail on my part. I did everything to the best of my knowledge, and that is all I can do. It might seem a little awkward and double standard that yesterday I claimed the credit but won't accept todays readings as the results of my doing. But I work every day to manage this disease, every friggin' day. No matter what my results are, I should get rewarded for this work. And if diabetes decides to throw stones in my way, I'm neither going to thank it for that nor will I take responsibilty for the resulting stumbling.

15. September 2011

Success

If I had a CGM (which I don't) yesterday would have been a no-hitter, I am sure. My bloodsugar read 90, 121, 96 and 74. Ok, I now it's only four readings (I usually take more readings per day, I swear!) so there was a lot of time when I don't really now what was going on. But it was a slow day where nothing out of the ordinary happend and my basals seemed to be quite ok the last time I checked.

The biggest hassle for me are meals out. I'm a big SWAG boluser. And as those things usually go - I end up not in range. Sometimes not anywhere near range. But I have really gotten better during the last year. Yesterday I also had a meal out, and it seems I guestimated it correctly for once. Woohoo!

So for me yesterday was a success. I painted a WOW! into my log, as a little reward. Yes, I log. Yes, it's a pain in the butt, but for some weird reason it helps me to gain better controll. Fact is, without my log I never would have realized that yesterday was a good diabetes day. And I think it's important to see little successes like this once in a while, because they show that all the work we put into our diabetes management is not in vain but indeed does make a difference.

On a completely unrelated subject, I realized that the term diabetic, which I used, is officially political uncorrect. I understand why, but personally was never offended by the term. I'm a physicist but that doesn't mean I am defined solely by that. The same goes for being a daughter, sister, girlfriend, collegue, for being an agnostic, for being gothic or for being diabetic. But I also do see that recreational dancing doesn't make my a dancer. So I'll try to remember to use "person with diabetes" (PWD) instead.

12. September 2011

Eyes

On Thursday I had an appointment with my eye doctor. Unlike many other diabetics (it seems) I've never been afraid of the results of my eye exam because they have always turned out "without pathological findings". Only this time they did. In my right eye the doctor found few small bleedings and the information sheet for my two-in-one doctor & diabetologist (who's a type 1 himself and a really great guy who "get's it") says micro aneurysms and mild/modest retinopathy for the right eye.

After getting over the first shock, I'm still not quite sure what to think. I never really looked into diabetic long term effects and I have not googled anything yet. I'm easy to freak out - or rather panicked - and I don't want to get hysterical ahead of time. But of course I'm worried. I'm 26, for heavens sake! When I start now with bleedings in my eye, how will things be in 50 years??
My A1c hasn't changed a lot during the last year. It's always around 7.5-7.8, so it's not good but also not terrible and it's stable. If anything I have less unsteady blood sugars. My ophthalmologist said that poor control during puberty (or in my case college) can take it's toll even years later. Not saying I didn't know that... it just wasn't very present in my mind. Also when I started to regain control and took responsibility for my health again, I kinda thought "everything is going to be ok now, 'cause I'm taking care of myself". You wish.

My follow-up is in January. I just hope hope hope that things will not get worse. (Or even get better. Can they get better? I didn't dare to check.)

10. September 2011

Fiery Dragon

Wanna know what I have been up to the last few days? I made a dragon. It's a birthday present for a friend. The special challenge about it was that it had to spread its wings, it's got to be feather light and it's got to be glued to a stick, because it's supposed to be a hair accessory.

I used a thin but stable wrapping paper, tissue (as found in shoe boxes), wire, sesame seeds, acrylic paint and watercolor, feathers and prepared feathery wings, and one wooden chopstick.
    ♣ To stuff the body I used a string of tissue, wrapped around a wire to make the bending of neck and tail easier and to give it a good deal of stability. 
    ♥ I used tissue shavings and a 1:1 glue/water mix to cover everything - this makes the origami look less prominent and thanks to the glue the paper becomes quite hard and stable. In one go I glued also the sesame seeds to give it a scaly structure. 
    ♦ Now it looks like this:
    One can see the ugly colored wraping paper shine through the tissue. 
    ♠ The next step was to glue the feathers to the wings. Part of them were already pre-glued (the bright ones), so I had some orientation on how to make it look (more or less) like a wing. 
    ♣ And last but not least, of course, the coloring: I did the first step of this (orange undercoat) before glueing the feathers. After that I added a very diluted black and then details in black and gold. Oh, and I glued two plastik "sparkle stones" for eyes. Then I had to cut a hole into the belly of the beast to glue the chopstick. (It's always a shame to destroy something you just made. And in this case it's also pretty cruel. But, alas, it had to be done.) 
    ♦ Finished work:
    Sorry the pics are a little blurred. Still hope you like it!

Edit: Some new pics, this time showing the dragons purpose in the hair of the presentee!

5. September 2011

My Diabetes Story

I guess I should start with my diagnosis. Well, I was very lucky with that. I was diagnosed in December of 1994, when I was nine. My mom is a type 1 too, and she recognized the symptoms early on. Actually, she got suspicious when I asked for a second glass of apple juice during dinner. We were at a restaurant, and when we got home, my mom checked my blood sugar with her meter (which was blue and huge like a brick). I don't remember what the number was, I guess something in the high 200s.  And off we went to the next hospital.

I wasn't shocked. My parents also weren't, so I thought I had no reason to worry. Okay, probably they were, but I didn't realize it. But they already knew what everything was about and they knew there had been a 3% chance of passing it on. Hell, they knew more about diabetes than the doctors treating me. That probably helped a lot for me to feel secure. For me it was a new exciting task, that I had to fulfill (I was an eager student at school). I wanted to learn and do everything necessary (I did my own shots from day one), but I didn't realize what it meant to have diabetes yet. It hit me, when I was back at home for some weeks. That my life had changed forever, that it wasn't a task that could be finished, but that I had to take care of it for the rest of my life.
Another interesting fact: I never realized my mom had diabetes before my own diagnosis. Her testing and injecting was so part of everyday life, that I never questioned (about) it. Even when I got home, I needed a while until I saw it, because I was so absorbed of learning everything.

Well, I got used to it, I guess. At some point during growing up, I got too used to it... I lost interest. And so I had some bad years, A1c wise, while I was studying at the university. Until it hit me again. That I have too take care of myself, that I am responsible for my body and my health. At that point, I was overwhelmed again, frightened, and very alone. So I turned to Google. I don't remember what my search term was, but I found the diabetes blog of another twenty something, who seemed to write about my fears, my every day struggles, my lows. (Of course she wrote about hers, but it felt so... close.) I found more blogs, I found tudiabetes, I found new hope, motivation and support. So I became a B.A.D. (born again diabetic).

Right now, my life doesn't revolve around diabetes. There are periods when it did and will again, but there are also periods of burnout and disinterest. Right now, it is in the middle which is best for me. (And maybe for you, because it means that I'm not writing about the D only.)

3. September 2011

And so I'm starting a Blog.

I don't even know how to start. Explaining why I want to blog? Telling you who I am? Finding a great design for this new way of expressing myself? Ahhh... it's a little overwhelming.

Ok, so why do I want to blog? Do I even have something to say? Probably not. Not a lot. But. I started to read blogs about two years ago. I was looking for somebody like me - a twenty something with Type I  - because I felt alone, very alone at that time, and I found somebody. Everything started out with Kerri. I devoured her posts and everything in her blog's archive. Over time, I found a lot of people, actually - I discovered the DOC, the Diabetes Online Community. It's huge, megabyte and impact wise. And all it's members are constantly blaring about how great it is to be a member of this supporting group of people, who "get it". And I'm so fed up with just being a lurker. I can't say everything I want to in comments on other peoples blog posts. I have gotten support from the DOC and I want to give support. I want to give back! I want to be a part of it! I want to have my Pricked Finger in the Pie!

So here you have it: the name of my blog. I think it sounds a little too much like a blog about baking though (and in this context a little disgusting). As a physicist, π was the obvious choice to go for, but this blog isn't about mathmatics or physics either. Or only once in a while.

So what is it about? Probably everything that crosses my mind. Which might occasionally include baking pie. Or π. And of course diabetes. And crafting, did I mention that I love all kinds of crafting? I'm going to show you pictures. I'm also a part time gothic. And a nerd.

I'm not sure I want too many people to read this blog. It could be embarassing. I might only post one post ever. Or stop writing after two weeks. Not saying you shouldn't read or comment, of course... just please don't have high expectations. Oh, what the hell, Vera, shut up already. We'll see how it goes. Also, thank you people who inspire me to start at all.