Babies Beware.

Sometimes, people amaze me.

I have always had people trying to tell me what to do and what not to do. But not too long ago, I was sitting in the theatre lounge, minding my own business. I had a snack and so I stealthily pulled out my insulin pen and was about to give a shot. This, interesting little man, who happened to be the assistant director on the show I was stage managing, watched me. Which was fine, I was out in the open, whatever, people do it all the time. I was not, however, prepared for what followed.

In his tiny, nasal, prepubescent voice he asked me, "Do you have the kind of diabetes where you can't hold babies?"

I just stared at him. "I'm sorry, what?"

"You know, the kind of diabetes where you can't hold a baby."

Yes, he meant like physically hold a baby. Like I might by touching it infect it or something. I didn't even know where to begin. What? My mind short circuited for a moment. "Well...I...I mean I wouldn't give someone with a low blood sugar a baby to hold but that doesn't exist"

He then mumbled something about Steel Magnolias and I checked out. I've heard some strange things in the past, some ideas about diabetes that are horribly misguided but that was the most unique.

Through the rest of the show he would throw lovely little tidbits of information at me about what I should and shouldn't do. According to him I should steer clear of candy, every drink but water, pizza, and for their own safety, babies.

Thank you kind sir. I will make a note of this.

The hunt for ODS

I started a new school year a couple weeks ago. I'm now a junior in college, umm what?

Anyway, as usual I had to bite the bullet and go get my letters from the Office of Disability to give to my professors. I hate them, I don't see myself as "disabled" but they won't do anything for me if I need it with out the letters. I always make sure when I give the letters to my professors I say a quick  "Hey, I'm a Type 1 Diabetic, heres what you need to know, I might have to eat, beep, or run to the bathroom but I really shouldn't have any problems." 

So, I decide to go get the letters and I walk in to where I think the Office of Disability is. Or at least where it was after I had to hunt it down from when the moved the previous year. I walk into the building and see a sign "ODS has moved to room 2500."

OK, fine, so I go looking on the second floor. Nothing, I ask where it is and they say its on the 4th floor still. Ok, I'm now on the 4th floor and cant find it. Seriously? So I go into the Office of Psychological Services (on the borderline of a breakdown... how appropriate) and ask a secretary. She says its on the 2nd floor. I tell her I was told it was here, on the 4th floor. 

She decides its her mission to find this place. This tiny, round, redheaded woman looks like she's on a mission to save the world. We go to the second floor, the same 2 women from before watch us and then insist its on the 4th floor. We keep seeing signs saying its on the 2nd floor. Eventually we find the office, on the 2nd floor.

So basically, my school is just cruel. Of all the offices to move around and make you hunt for they chose the Office of Disability? They sit there and confuse the disabled? What if I had a real learning disability? What if I was handicapped and had to do all that? Thats just plain mean.

Fresh start.

I love my insulin pump. I love the ease of pushing a couple buttons to give a boost of insulin when I eat and thats it. TaDa! I love how discrete it is to bolus. The things I don't love about my insulin pump are greatly outweighed by the things I love about it. 

But change can be good.

In the fourth grade I started on my first insulin pump. I've pretty much only been on the pump since then, I took the first pump vacation a couple years ago. It was just for a couple of months but, for the most part, the pump was my choice for treatment. Until a couple of months ago. 

Right now I'm on shots. The initial reason for the swap out was I was sick of not falling asleep. I could not get comfortable and every time I was almost close I would be tangled in tubing. I just started having a very difficult time cooperating with my little machine. I grew to hate it. I hated changing the site every 3 days. I hated the tubbing being tucked in my waist band and the bulge the pump caused in my pocket. I was sick of those little "easy" buttons when in reality, its still just as difficult to make the right dosage decision. I even hated the color now, every time I saw that translucent blue peaking out I wanted it to vanish. No more hiding that box under my clothes when I dress up. I was so sick of everything about it, a constant visual reminder of insulin, blood sugars, and schedules. 

I have been on my shots for about 2 months now and I am still enjoying it, but, like with the pump, there will come a time when I am sick of this and will go back. I have noticed things that are different when on shots though. For all the "freedom" I claim to have on a pump, there are advantages to this as well. 

For one, as long as I give the long acting insulin (for me, Levimir) on time, I can have an even more flexible schedule than before. I had difficulty doing shows with demanding schedules on the pump but I haven't had an issue yet on shots. There is also physical freedom, no strings, no constant visual reminder. 

I drastically dip much less frequently when I exercise. Normally, on the pump, even if I went to the mall and did a lot of walking, I would drop. I haven't had that problem on shots, I think something can be said about using a long acting insulin, at least for me, I feel more stable. 

Its like the illusion of a fresh start. 

Its shocking, but I know I'm diabetic.

So being Diabetic means a lot of check ups for various body parts. This is my spring break, so naturally, I'm not on a beach in Florida, I'm catching up on doctor appointments. The dentist was yesterday, it was lovely, no issues, go me! Today was the eye doctor, also lovely. The thing is, this was a new eye doctor. One of those docs that finds the fact I am a Type 1 Diabetic a fact that I'll easily forget. 

We start the appointment with the usual, "How long have you been Diabetic?" I reply "12 years," (the anniversary is in about 2 weeks). So he is aware that I have the knowledge and memory of being Diabetic. Had my reply been, "How long have I been a what?" I may understand the following conversation. 

He starts telling me why I need to go to the eye doctor, how much easier it is to look at my eye and tell if the diabetes is affecting my organs than to biopsy my kidney. He then tells me that he's going to dilate my pupils because no other doctor can see my whole eye since they can't do that. I mean, you're an eye doctor, I expect you to be able to do a little more with eyes than my endocrinologist or whatever.

After my eyes are nice and owl-like I go back and he goes in vivid, in-depth detail about why as a diabetic I need to get my eyes checked, why, as a diabetic, he needs to look in my eyes, why, as a diabetic, my A1C needs to be great, why, as a diabetic, I need to be careful. After he tells me what I need to do, as a diabetic, he lists the reasons why he thinks being a diabetic would be hard. Every, single reason why it is difficult. 

Keep in mind I can't reply, my head is in some device where I'm resting my chin in a sling and he has very, very bright lights centimeters from my eye. I can see the back of my own eyeball as he describes to me how much my life must suck, just, you know, as a diabetic. 

He is not the only medical professional I have met that talks to me like the fact I have diabetes is A) news to me or B) something I can forget in the span of about 15 seconds if I go unreminded. I once fell down some stairs and the woman at student health told me about 15 times in the span of 5 minutes, "your a diabetic, this is bad." No, really? I'm human, this is bad. 

Doctors of all sorts are amazing people. But the next time I encounter one who feels it is necessary to remind me of a disease I have had for 12 years or has to recount the details of why it is difficult, I will reply with complete shock and act as if I've never heard of the disease. 

Some Experiences Make You

So, as a Diabetic, inevitably you will earn some stories. Stories about the ignorance surrounding the disease, about low blood sugars, about mistakes, and about chaos. All these things, mold you, you take away new information from each experience. Some is useful, some is not, and some make you feel dumb for not thinking of it before. ni 

Here's what I mean:

Little boys are dumb. (at the time, I was a little girl, so I can say this.)

• I was once on a play ground and it was recently after I started using an insulin pump. I was between 4th and 5th grade and this boy would not leave me alone. He was making fun of my pump and I was sick of it. I told him I was a robot and that my pump was my battery pack. I then proceeded to chase him around the play ground until I had to go home. I bet he still thinks he met a cyborg.
• There was this special little area in the classroom in 4th grade where, when it was your turn, you got to sit for DEAR (drop everything and read!). It was my turn and I was in there with this guy named James. After he sat there, trying to get as close to the wall and as far from me as possible for a while I asked him what was wrong, he told me he didn't want to catch my disease. I said it wasn't contagious but he just went on and on about it and how gross that made me. The next day I checked my blood sugar at recess and then chased him with my bloody finger. I now know this was not the best way to deal with the situation, but it was a ton of fun making him scream like a little girl. 

Low blood sugars make for dumb statements

• In the 9th grade I was sitting in my desk in the front of my history class and everyone was in groups. I had to reach down for my purse and it was on the side with the stupid arm rest (which by the way is further proof the world hates leftys). I reached, and reached and eventually I realized the desk was tipping over. I was spaced out and dizzy and too slow to stop it so instead, I look over at the guy next to me and simply say, "I'm falling." I then flipped over still sitting in the desk. The teacher came and flipped it back over, right side up, with me still in it.

Travel isn't as easy as you'd think.

• Once there was a fire alarm in the middle of the night when my family was staying in a hotel. It woke us up and we all scrambled to get out half asleep and panicked. I realized my blood sugar was low, and looked up to see my mom clutching my purse with the food in it and running down the hall. Great. Eventually my dad and I caught up. Turns out the "fire" was burned popcorn and my mom heard this and started heading back up the stairs. Dad and I yelled, one last time, and got her attention. She finally turned around and handed it over.
• I got distracted by the TV in a hotel room while taking a break from my pump. This was before I used insulin pens and was just using plain old syringes to give shots. I gave 17 units of my fast acting insulin instead of 3. Thankfully I realized this. 3 Dr. Peppers, a juice box, banana, doughnut, and biscuit later I was finally stable-ish. And it was time to ride roller coasters!
• My pump set off an alarm in an airport once. It had been fine in the others so it was a little surprising. After attempting to clarify with a grumpy, bossy security person that this was not a cell phone no matter how many times she said it was but actually an Insulin pump, the lovely security person put me in one of those great plastic boxes like a gerbil. I then had the lovely experience of them using that wand thing and double checking that I was not carrying a bomb. I walked to my mom when it was over and found out my stuff, everything but my belt and shoes were still in the line. We didn't really handle that well.

Etc.

Throughout the years, people tell me things I can and can't eat. They tell me things I can or can't do. They tell me their 400 pound cousin has diabetes and died of it or their grandma has it and only has one leg. Thanks guys. My reaction is always different. To some, its, a simple, somewhat generalized, "yes I can eat this. I chase it with insulin, I'm good thanks." or " Oh they do? I'm sorry. Yeah, it sucks."  Sometimes I'm not as nice. While I try to educate and correct misconceptions I'm not always a beacon of Diabetic perfection and optimism. Its kind of fun to get creative. It can be easier to say that I'm a robot than to explain the truth. If I'm stuck with this, occasionally, there has to be some perks. 

Frankly, Our Options Suck... But We Deal With It.

So heres the fun thing. Treatment. While yes, I am thankful I live in a time and a country where I have a choice, they really aren't that great. You either do injections multiple times a day or you have a pump tethered to your side all the time. No matter what, your sugars go up and down and you never get a break. We try for control but even with the best technology, it is very difficult to achieve. 

Personally I prefer the pump but sometimes, a change can be the thing that brings you back from the edge of being fed up and exhausted.

There are good and bad with both.

Injections can be very inconvenient. It isn't as easy as just pressing a couple buttons to give some insulin when you eat or you are fixing a high blood sugar. Often the long acting insulin doesn't really last as long as it is advertised. 

However, on the plus side, there is a freedom to not being attached to something 24/7. There is a different kind of flexibility that comes with injections that you just can't experience when on the pump. After being on the pump for a long time and then doing shots for a couple months its always amazing to look at myself in the mirror and not see that little box sticking out of my pocket or tubbing trailing down my leg.

Pumps can be inconvenient as well. You have to be sure to tuck the tubbing in to what your wearing or door knobs can be among your worst enemies. A night full of tossing and turning has you tangled in tubbing or with a lovely and somewhat painfully, square box imprinted into your side, back, or stomach. There is also always the risk of a bad pump site that leaks or kinks and air bubbles in your tubbing.

But on the other hand, pumps make it easy to give insulin for a meal discreetly, mine (the Animas Ping) even pairs with a glucometer that works as a remote which is great when you have hidden your pump under clothing. They are also great for allowing your insulin to adjust at different times through out the day and can allow for better control. 

No matter what, there are times where it gets very, very old. Where it gets hard to continue, but, there's no other option. It passes. Right now this is the choice given to us and we have to make the best of it. One day, there will be a cure, but until that day, we have these two things to choose from and we have no better choice than to make the best of it.

To sensor or not to sensor?

I am lucy enough to have a CGM (continuous glucose monitor). I have the Dexcom 7 and I am very happy to have it as a tool for my Diabetes management. It can be pretty handy, but, I believe that it is not worth fighting the insurance company for in all cases. At least not yet.

While I do find my sensor helpful, it can be more of a hindrance than it is worth.

Helpful times:

• When your blood sugar is pretty stable, if it is moving up or down slowly it can be pretty accurate
• if all you want is to see the arrow of the direction your blood sugar is going (up, down, stable) and not exactly the actual number
• When you have had a sensor site in a for few days and you are very busy. It has acclimated by this point and its nice to just have to look down an check
• When driving a long distance, again maybe the number isn't dead on, but at least you can see if you should have a snack soon
• When you are sleeping (it has caught many low blood sugars in my sleep before I would have caught them naturally and the alarm wakes me up.)

Not so helpful times:

• When you're having one of those days where your blood sugars are crazy erratic, it can be as much as 100+ points off
• When your out of range of the reicever
• When you are anywhere near being dehydrated
• It has times where the reading is "???" and there is nothing you can do about it but hope it snaps out of it on its own
• you should never, treat a blood sugar based off the sensor reading. (In other words, it does not really help with cutting down on finger pricking)

A couple things I have learned:

• It does hurt a little more than putting in a pump site, but it becomes unnoticeable
• set the "high" and "low" alerts different than what you would really be concerned with. for example I have mine alarm when I am 100 for lows, in reality I'm normally about 80-90. 

Hopefully, soon, the kinks will be a little more worked out the readings will be more accurate. It is a nice tool to have sometimes but it isn't always a tool worth using. If anything sometimes I feel that it causes me to check my blood sugars more often because I see a number on it that I don't believe enough to treat without my regular glucometer  backing it up.

Portable pick me ups

So I'm going to start with what is probably one of the most random subjects.

What to carry on you for lows. I have learned the key to this over the years, there's a few options but I have personal favorites.

First of all, in my personal opinion, pretty much all Diabetic centered food is gross... Especially if the goal of this food is to get your blood sugar up. I find glucose tabs disgusting (and they really aren't all that helpful) and there was some other thing I tired once that was so horrible I blocked its name from my memory. It was a weird squishy bag of grossness.

Fruit is always great, but its not all that easy to carry around in anything that gets beat up on a regular basis.

You always have the option to carry icing, which is pretty awesome. I did that for a while but

• It can be squished and icing will go all over your stuff.
• Its too sweet for me and hurts my stomach when I eat it in a hurry.

From many episodes of trial and error I have learned that juice boxes and little bags of fruit snack gummy things are the best for carrying in a purse. NOT juice pouches like Capri Sun because they tend to explode when squished and are easily punctured... this has caused the demise of many, many purses. I also used to carry Gushers but they tend to explode in their packets and then are just a giant messy mush ball when you try to eat them. 

So the winners are: Juice boxes and fruit snacks!

Also, while more sturdy than pouches the juice boxes corners wear out when carried around for a long time, I keep them in zip-lock bags inside my purse, its also helpful for after you've had to drink one and there isn't a trash can, then you can put it back in the bag and in your purse or backpack without getting remaining juice on anything. 

My...Goal?

So I think now would be the time to introduce my goal. To share the crazy stories, situations, and experiences I have accumulated over the years thanks to dear old, Type 1 Diabetes. Not only do I want to do this but also share some things I have figured out. Now, somethings are not true for everyone but hey, when stuck in this mess can a little extra info really hurt?

So why should anything I say have any meaning? Well, I'm no official expert. I have been a Type 1 Diabetic since I was 8, it will be 12 years in March. I know my story but not yours, or anyone else's, all I have to say is not to be taken as medical advice or anything, it's just kind of for fun. I feel the need to share my experiences, maybe just share a new point of view.

I don't know how long this will last. We shall see!