My Type One

"Your A1c test results are ready"

2009-03-31T11:04:00.000-07:00

I had the absolutely most exciting night in my diabetes history last night. Here's how it went down...

It is 11:20pm, I'm in bed, I had just put down my current read "Cheating Destiny", I got all cozy, then my phone 'dings' with a new email message. Usually I sleep with it on silent so I don't have to hear that but I forgot to switch it off. I reach over to turn it to silent and check the message. I even said out loud to my boyfriend "I'm just going to check this message" because I usually ignore them when I'm in bed, didn't want to seem TOO addicted to my iPhone.

The subject of the email was "Your A1c test results are ready." My heart sinks and I can't click on the thing fast enough. I'm usually not this excited to get my results but I know i've been working my you-know-what off the past couple of months and I'm desperate for reassurance that i've been improving my numbers. My last result was a 7.3% and that's around where I always am, and have been since day 1 almost fifteen years ago. I do recall maybe once being a 6.9. Anyway, for this test I was hoping with all that I had to be anywhere under a 7 because it was so rare for me.

I scroll down the message to search for that little number. It felt like they hid it on purpose to make me squirm. I usually go online to my doctors website to look at my results, but this was one of those at-home tests so I wasn't used to the layout. I see this fuzzy number on my little iPhone screen...looks like a blur point nine. Frantically zoomed in hoping to see a 6, chanting in my head *six six six six six six*.... I zoom in .... and it was a 5. Yes, a 5! Let me repeat (to myself because I didn't believe it) my A1c is in the fives!!!!!! HOLY COW!!! I was almost crying. I was shaking, smiling, in shock. I never in my life though I could be in the fives! I figured I'd work hard and end up in the sixes, but never the fives!

Needless to say I went to bed with a giant smile on my face, literally! ....Of course that is after calling my mom at 11:30 pm to tell her :)

Seattle Here I Come!

2009-03-20T15:09:00.000-07:00

Tomorrow morning I will board a flight to Seattle, WA for an entire week!! I've never been there and I am very excited. The only problem is that I have no idea what to do there! I'm looking for suggestions, please comment and give me some ideas! Thanks!

What NOT to tell a 10 year old who is being diagnosed with diabetes...

2009-03-12T13:15:00.000-07:00

You can find this blog over at the Diabetes OC where I am the featured blogger (not blooger...I'm looking at you ninja) of the week.

Featured Blogger!

2009-03-11T13:36:00.000-07:00

Hey everyone, take a look over the The Diabetes OC, I'm this weeks featured blogger!

Thanks so much to all of my readers!

Arm sites for sensors (my second Vlog)

2009-02-19T18:36:00.000-08:00

A little history of Joanie and "medical" adhesives

2009-02-11T23:07:00.000-08:00

I got a new roll of adhesive in the mail today for my infusion sets and sensors. I had it out on the counter and forgot about it for a while. Later that day I came back in the kitchen and saw this, my "medical" tape, next to the fruit bowls, like it belonged there, it's just such a part of my every day life. Seeing that reminded me of when I was a kid.

I would sit in the bathroom at home going through our "first-aid" or "band-aid" drawer and see the rolls of medical tape. I used to take pieces off to stick them on me and pull them off again, just to see why it was considered "medical" tape. I used to wonder why this stuff even existed, I mean why in the world would you have to TAPE something to your body!?!?! It just seemed ridiculously silly

.....and 15 years later here we are

Thanks to all who participated!

2009-02-10T14:37:00.000-08:00

So far we have over 120 submission for the first Type 1 Diabetes Survey! The results are very exciting. I encourage everybody who participated to hop over and take a look at the results. Due to it's great success I have created two more surveys regarding some different issues. I can't wait to see the results!!!! You can find them here!

My first vlog (also my first low vlog, oops)

2009-02-05T16:25:00.000-08:00

The downside of tight control

2009-02-05T13:30:00.000-08:00

So lately I have been really pushing hard for better control of my diabetes, I mean really pushing. I have been seeing a dietitian, an endocrinologist, and being in email contact with a CDE almost every other day. I have been feeling great, and doing great as well! What's the catch? Well yes, there are a couple, and here they are...

First there is the trouble of tighter control equalling more frequent lows and the loss of sensitivity to feeling these lows. When my numbers are relatively out of control over an extended period of time I'll 1. have less frequent lows because I am eating like a starving child who hasn't seen food in months, and 2. if I do get low I totally over-treat it and end up high again. But when my bloodsugar is cruising around 100 mg/dl or so it only take one extra unit of insulin to drop me to 60 mg/dl, likewise it only takes about a 40 carb miscalculation to drive me into a low. This leads to a lot more lows than I was experiencing when I was "out of control" (I hate that term for diabetes, you're either "in control" or "out of control", aren't we all out of control by definition of the disease? whatever). This is why by nature, good control leads to much more frequent lows, and the more lows I have the less sensitive I am to feeling them, thankfully the CGMS helps a TON here. The plus side to all of this (aside from the obvious, reduction in complications, feeling healthier and happier) is that now, when I do get low I try to practice the 15-15 rule which usually prevents the rebound highs afterwards. I am now comfortable not over-treating, I have less of a fear of the unknown (ie. how much I'm dropping, how fast, why).

My second and biggest gripe about good control is the social aspect. Non diabetics don't understand that the more you "do" the healthier you probably are as a diabetic. In the past everyone assumed I was fine and in great health because I was never seeing doctors, I was never low, never really testing in public, I was just cruising along. But now people ask, and look at me like I'm sick and dying. It is SO hard to convince them that I am going through all of this because I AM in good health. I met an old friend for lunch today and he was surprised to see me test 3 times during out chat, and surprised to hear that I had so many upcoming appointments (the subject came up unfortunately, and I didn't want to lie), he was also was confused as to why I have so many lows these days (minor lows, remember, very minor, it's not like I'm almost in a coma every other day). He looked so incredibly concerned for me, like I had really fallen off the band wagon of good health, almost disappointed. I took a lot out of me not to feel insulted and get highly irritated at this. I had to take about 10 minutes to explain to him why this is a sign of good health. It's hard for them to grasp that now I am healthier BECAUSE I am seeing these doctors and testing so frequently, not that I am unhealthy THUS I need to see them and keep testing.I *sigh*

That is my rant for the day, thanks for listening.

Take my Type 1 Diabetes Poll!

2009-02-02T14:08:00.000-08:00

I have created an anonymous poll for people with Type 1 Diabetes! Go ahead and take the poll to see the results!

Non-D Jealousy

2009-01-27T15:37:00.000-08:00

I know this sounds silly, but I have a feeling some other diabetics will agree. When you have type 1 diabetes, in a way it becomes your world. So much that we sometimes forget what the rest of the world goes through being a non-diabetic. I am obviously well aware that my friends and family do not have to worry about their blood sugar going high or low, they don't have to pack a briefcase of diabetes supplies everywhere they go, and they do eat whenever they want with out having to bolus. But I don't think it really sinks in until you let somebody (who does not have diabetes) test their glucose on your own meter. When you see that number, that perfect 86 or whatever it is, and the way they don't care, don't appreciate that number, to them it's just a number, it does something to you, it really hits you. At least that was my experience.

Everyone needs an Assistant Diabetic

2009-01-26T13:43:00.000-08:00

I am very excited to announce that Colin (the wonderful, awesome, helpful, handsome, live-in boyfriend) put his first needle in me last week, all by himself. It was a sensor too, those needles are wicked huge!

I usually put my sensors in my love handle area but I know that I should be venturing out to new areas in order to prevent scar tissue. I know that don't want to go toward the front of my abdomen because I reserve that for infusion sets, so I decided to head backwards. Obviously I can't quite reach behind me so I asked Colin to do it. To my surprise (although maybe not yours) I was about 10 times more nervous about the idea than he was. Now, if it were an infusion set I wouldn't have minded at all, but those sensor needles still scare me! It was hard to not be in control of the insertion.

Regardless of my fear he did a great job! It was quick, painless, and even better than I could do on my own! I think I have found an assistant diabetic! Hooray!

What is with these reservoirs!?

2009-01-19T21:08:00.000-08:00

I posted last month about bubbles getting in to faulty reservoirs, and now this!?! I couldn't believe it! I pulled my pump out to bolus and noticed that my tubing was coming out of my pump at a strange angle, a 90 degree angle in fact. I pulled out the reservoir to take a closer look and found that it had broken.

The tubing (I learned from this incident) has two parts, an inner soft thin tube, and an outer hard (relatively hard) shell. What happened was that the outer harder shell snapped but the inner tubing looked like it was in tact (although I find it hard to believe because of those bubbles you can see going down the tubing).

I was of course at work when this happened, so I had to keep the girls occupied with the TV so I could sneak off to the bathroom for a few minutes and redo my set.

Well, as you all know, life goes on. Another day, another reservoir, hat's just the rhythm of diabetes....it just keeps on going.

Anyway, that Is my rant for the day. Also I just updated the last week worth of my Diabetes 365 photos on flickr. I plan to start updating these directly from my phone on a daily basis so there shouldn't be anymore 7-day-at-a-time uploads.

clicks refresh button on diabetes

2009-01-12T13:17:00.001-08:00

Sometimes I feel like a ticking time bomb, the pressure of diabetes just grows and grows, until I give up and have to restart emotionally. Here's a little story of how it happened recently. Saturday morning I woke up at 6am to constant "bad sensor" errors....over, and over, and over and over. Eventually I got out of bed to find a solution that didn't involve putting my pump down a garbage disposal. Well, seeing as how my Minimed sensor had been in for about a week a gave it a break, didn't destroy my pump, and figured I was due for a sensor change anyway so I yanked it out. Now here's where the trouble began...

I took a long bath to relax (and also because I love bathing when i have no gadgets stuck in or on me). After that my skin was perfectly clean and I was ready for my new sensor. As usual I inserted the sensor just fine but when I tried to pull out the introductory needle the entire sensor came with it (so much for 'clean' skin). I was extremely frustrated because these things are painful, they are nothing like your typical disposable syringe. I couldn't let myself get too upset because i was thankful that it came out in once piece (sensor and needle) which means I could give that $35 sensor another go before tossing it, and hope for the best. Anyway, on my second attempt I did get the needle out, but shortly after the adhesive peeled up and the sensor slipped out. Okay now I was angry, there went $35 out of my pocket. So then came round three, this time it went beautifully! I even got my adhesive over the transmitter to be nice and smooth, perfectly even, all OCD friendly :) .....but it gave me constant "bad sensor" errors for the next two hours until I gave up, yanked it out and (aggressively) threw it 'at' the trash (missing of course). Now I had wasted $70, in one day, on NOTHING. Needless to say I gave up for the weekend, I didn't so much as want to see those things for a while. I should also mention that I just found out this week that I am denied coverage for my sensors, that explains why I got so incredibly frustrated with this.

Well, after I recovered, I put another sensor in this morning and everything is going well. I'll get another 7-10 days out of this puppy. hooray

"you're brave"

2008-12-30T22:11:00.000-08:00

Tonight I was changing out an infusion set, and because it was a new set that I'm not accustomed to I asked for a little help from my boyfriend (we live together). I had him hold the set while I maneuvered the tape over it. While he was waiting for his cue to jump in and help inserted the needle and cannula, which of course was a stubborn one that i had to really press hard to get it in my skin. Now, he has seen me 'do' this a hundred if not thousand times, so it was no surprise, but he had never been right there looking that closely as I did it. It was quiet, I was doing my thing like it was no big deal and he said "you're brave." I ignored him because right as he spoke the needle popped in and I needed his help. After we finished I sad down and though about how hearing that really stuck with me. "I am brave." What a line for a diabetic to hear. To us, it's not bravery, it's not being bold, it's not liking needles, or even just being okay with them...it's survival. This doesn't mean I didn't like the comment, it for once was a comment about diabetes that I actually enjoyed hearing, it was rather flattering...even though I didn't agree with it.

So what I'm pondering now is how people view what we do? The simple things, the testing, the shots, the infusion set changes, the carb counting, the lows, the hights. I get a lot of different reactions as I'm sure all diabetics do. Without mentioning names here are a few:
1. Often I get the "WOW I could never do that!" then I reply "yes you could, if you had to" then i get something like "no really i'd just end up dying, I just couldn't do it"
Needless to say hearing this really pisses me off! So they're telling me that if they were in my shoes they'd choose death? hm, unlikely don't you think? *sigh*
2. One person in particular always cringes and is disgusted (in a 'nice' way). Saying things like "omg omg omg how do you do that? eeeeewww, wow, that sucks" and so on and so forth. This is my leas favorite, and I almost always snap back at them, granted they do have a real phobia of needles.
3. There's always the people that just stare wide eyed, then look up and smile politely
4. and lastly i'll mention the people who pretend it isn't happening, when I test, bolus on my pump, take a shot, read a label, calculate. I like those reactions haha :) Sometimes I just want to be treated like another human being!

Yet another Infusion Set

2008-12-30T18:42:00.000-08:00

Yesterday afternoon I decided to give MiniMed a call and ask for some samples of an infusion set I had yet to try, the Sof-Set. Now I know I talk very highly of the Sure-T infusion set, it is rather great, but honestly I got bored of it (hey you have to have fun SOMEHOW with diabetes). What I liked about it is that it doesn't have a big white ring of adhesive like most do. I have trouble with adhesives sticking to begin with so I always end up adding IV3000 over my sets anyway, I figured I might as well get rid of that ring and use my own adhesive all together.

Anyway, they arrived at 8:30 the next morning! So far I am very pleased with this set, it is just what I needed, small, clear, easy. As usual your mileage may vary, so it won't work for everyone. In fact, most diabetics I know just use the white adhesive on the set and nothing else, but if you're like me and end up taping it anyway, give the Sof-Set a try!

I'll update this post as I start to learn more about the set and get more used to it!

Survived the Holidays (thus far)

2008-12-28T21:00:00.000-08:00

Oy, been a looooong week! Thankfully I get New Years day off this week! Anyway, I wanted to let everyone know to take a look at my Diabetes 365 page, where I'll be posting all of my diabetes pics. You can also find me directly at flickr if you prefer.

That's it for now, just wanted to drop in and say hello! I'll post something with substance soon ;) Take care!

Hooray for Accuracy!

2008-12-18T13:08:00.000-08:00

I just uploaded the data from my last week of CGM readings on the CareLink website and to my surprise my average sensor reading was equivalent to my most recent A1c result! What that means is my sense was actually pretty accurate, which is always a good thing. It was my best sensor (in terms of accuracy) yet. The only problem was that they usually last 10 days but this one crapped out after 6. It's like it put too much effort into those good readings and burnt itself out, those things have minds of their own I swear. Anyway, from the data i concluded that i need to do some serious basil rate checking in the afternoons. Every single afternoon reading was high. Either that or I (every single day?) don't cover my lunch carbs well enough, or I need to do a Insulin:Carb ration change for lunch time. Not sure what it is, so as always the place to start is basil checking....UGH. Here's one of my secrets, I hate basil rate checking more than ANYTHING else in diabetesland, by a freaking landslide. ....well here goes...

You know you're a diabetic when...

2008-12-12T23:24:00.001-08:00

...you make your very own AquaGlobe out of an old pump reservoir. Okay okay, here's the story. I got this beautiful Ponytail Palm Bonsai tree a few months ago, and at first it was so gorgeous!Sadly, as the months went by it began to look, well, not so healthy. So lately I've been learning how to better care for it. Basically the problem was that it needs a tiny amount of water nearly every day and I just never remember to do that. Recently I got an AquaGlobe for my Birds of Paradise plant and it works like a charm. I was thinking "wouldn't it be great if it fit in my tiny bonsai tree"!? But it was about twice it's size so definitely not a god idea.

Anyway, that's when I got the idea to use a syringe, but i wanted something that held more than 30 units of water so i went with a reservoir which holds 300 units. It lasts a few days, it's perfect!!!

Insecurities

2008-12-12T13:07:00.000-08:00

Something that I have noticed over the years is that we diabetics often get very nervous when first meeting another diabetic (particularly in real life, but sometimes online as well). I think there is an instant tension between the two. On one hand we're nervous to find that they take way better care of themselves thus by comparison making you feel like crap about yourself. On the other hand we're nervous about just the opposite, we don't want to come off as the diabetes police (because nobody likes the diabetes police) and fear making them feel like crap about themselves. It's a twisted situation, everyone feeling uncomfortable to discuss our habits of self care, but at the same time so excited and anticipating the 'juicy' talk. I'm sure this isn't true for everyone, but I sure feel it in myself and sense it in most other diabetics that I meet.

Why do we do this? Why are we so nervous? Here's what i've come up with so far. As we all know it's damn hard being a diabetic, that's no secret. Every one of us knows the internal struggles that are involved every single day, the pride when we do great, and that sneaky guilt that drowns us when we make mistakes. Too many of us (myself included) let these feelings become the source or our self esteem. If for a day we are a 'good diabetic' (and I hate that term by the way) we tend to feel like we can take on the world, we've figured it out, we won, and 'if we could just keep it up this time....' But if we are a 'bad diabetic' (I hate this term 100 times more) we feel like a bad person, a failure, a person who can't control anything, and we start to lose hope. Now I do know that this doesn't always happen, I know that all of us can also sometimes take a bad day in stride and just move on from it, and that is terrific! But I'm specifically talking about those really low lows (no pun intended). I think that we too often think that other diabetics will judge us harshly too. The truth is we don't, we're all on the same team here. But it's his misunderstanding that causes us have this intense fear of pushing another diabetics emotional buttons, or having our own pushed by someone else.

I think we all need to take a step back, realize what's going on, support each other, and trust that we will be supported. It's all we've got.

New Gadgets Page!

2008-12-11T10:49:00.001-08:00

Just wanted to let you all know that I added a Gadgets page to MyTypeOne. This has info on my meters, pump, infusion sets, and CGMS. Take a look!

Say hello to my little friend

2008-12-10T11:30:00.000-08:00

Well I'm finally putting another sensor for my CGM on today. I like the shadow in this picture...makes it look extra intimidating hahaha. But really, it's not bad, doesn't hurt any more than the tiny little infusion set needles (just looks big). So I have another 10 days of continuous readings. OH YA!!! I just found out that my insurance will cover the sensors (thanks to my friend Landileigh who informed me of this lovely news!) That saves me $350 on every 10 sensors! I am so excited!!!

Bubbles in the pump? uh-oh

2008-12-09T21:07:00.000-08:00

From what I've heard I'm not alone in my bitterness at my paradigm reservoirs. Within even a single day they fill up with big bubbles. Every box, every batch, every one does this. There's something wrong with the way the made the seal. I guess I should finally get around to asking MiniMed about this, I'm sure they can help in some way...maybe? Now that I think of it, probably not. Joanie: "Hey you're reservoirs have a faulty seal" Representative: "oh, well let me have out factory change the way we make them." Joanie: "Okay great thanks!" *wakes up from dream* Either way I haven't had too many crazy reading because of them, I think they pretty much stay in the reservoir, they aren't a fan of the trip up the tubing :) I don't recall this every happing with my 522 reservoirs, it seems to be only these. Anybody else having this issue? or have any fixes for this issue? If so do tell do tell! Alright, enough venting, time to finish the laundry.

Trying Something New

2008-12-07T21:24:00.000-08:00

Trying something new tonight.... I put my pump set in my thigh!! I tried it once a couple of years ago and kept ripping it out when i'd take my pants off, but now i'm using the Sure-T infusion sets (as opposed to the Quick Set which I used for my first 5 years of pumping) and that has what i call an "anchor" attached. So basically if i do pull anything out it will just be that anchor that isn't in me at all, and the actual infusion site will stay in place. I'll update you all and let you know how it goes.

Whatever it Takes

2008-12-06T22:23:00.000-08:00

I'll pretty much do whatever it takes in diabetesland to feel good and have fun with it. I've been spending WAY too much money on new gadgets. I bought one of those new Renew Lancing System thingys...totally awesome! Then I went back and bought a bunch of refills, even though i have an endless supply of free lancets with my insurance, not smart Joanie, not smart.

Oh also, i just got the purple UltraMini and it is beautiful! WAY better than pink (which really looks red in real life, eew)

Lets see what else....hm...oh, bought a freestyle lite (for like 10 bucks) on Ebay, still waiting for that to ship. The problem with that is Kaiser ONLY covers onetouch strips, so i can't really use the freestyle, I guess i'm just hoping i get free samples somehow? hm.

I should also mention that I have some pretty serious OCD issues (if you couldn't tell) so I am not proud of these purchases. I've been extra compulsive lately, at the same time i started buying all this, I also started biting my nails again, and thinking obsessively, *sigh*. I need to stop spending money on unnecessary diabetes toys, and I need to get my OCD in check again before i'm broke and nail-less hahaha.