Invisible Illness Awareness Week 2013

Did you know that this week is Invisible Illness Week? I didn’t either until this blog post came across my reader. Thanks Rose!  I used to love filling out the old email surveys way back in the day, so why not? Here’s an easy chance to learn a little more about me and my diabetes. Don’t worry, there won’t be a quiz at the end.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Type 1 Diabetes

2. I was diagnosed with it in the year: 1998, 4 days after my 18th birthday!

3. But I had symptoms since: Not long before diagnosis. Maybe a month before? I lost weight (Yay!) and was peeing a lot (Non-yay when there wasn’t a bathroom on my floor in the dorms!) but I didn’t think anything of it.

4. The biggest adjustment I’ve had to make is: Testing my blood sugar, injecting insulin/wearing a pump, and carrying all the crap ever around – wherever I go.

5. Most people assume: That diabetes is just having to test my BG and taking insulin before meals. I don’t think people realize how serious it is and how I am constantly aware of what my BG is/how my body feels/how my actions affect my numbers.
Or, that my foot is going to fall off.

6. The hardest part about mornings are: Giving up cereal. My BG hates it. No matter how I try to bolus. I miss you Cocoa Puffs.

7. My favorite medical TV show is: Grey’s Anatomy. I’m one of the 4 people who still watch it.

8. A gadget I couldn’t live without is: My Dexcom CGM. Seriously my most favorite Diabetes device ever! I credit it for helping me get my a1c down to 6.8 and I always say I’ll give up my pump before I give up my Dexcom. It has given me a sense of security and much more awareness of my diabetes.

9. The hardest part about nights are: Deciding if I need a snack before bed. Seriously. Food is hard.

10. Each day I take __ pills & vitamins: 2 Pills – Sythroid and Vitamin. I’m usually on Vytorin but my doc took me off of it in preparation for baby making. Also, continuous insulin via the pump.

11. Regarding alternative treatments I: Think they have their place. Although, with T1D there really aren’t any alternatives to insulin. But I think there is nothing wrong with seeking out a natural treatment for more common ailments like the common cold if that’s what you choose.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I don’t like my diabetes being made a huge deal of and I imagine if I had a visible illness I would feel uncomfortable much more often.

13. Regarding working and career: I’ve been working in some capacity of another since before my diagnosis. I don’t think that Diabetes has affected my ability to get and keep a job. I’ve really only missed maybe 3 or 4 days of work because of wonky blood sugars. In 14 years, that’s not too bad. I do feel guilty sometimes for having to miss time for doctor’s appointments, but I supposed that is what PTO is for!

14. People would be surprised to know: We really don’t want to hear stories about how your best friend’s cat has diabetes, or that your uncle “died from diabetes” or that your former boss’s mother’s sister lost her foot because she was diabetic. Really. Not helpful.

15. The hardest thing to accept about my new reality has been: My reality isn’t really “new” but back in college, the toughest thing to accept was that this is permanent. At least for the next 5-7 years until there’s a cure, right?

16. Something I never thought I could do with my illness that I did was: I got nothing. Ask me again in a year or so and hopefully my answer will be “Have a baby.”

17. The commercials about my illness: Annoy me.

18. Something I really miss doing since I was diagnosed is: Eating without thought. I miss not having to test, figure out my insulin, not having to wonder how this meal/snack will make me feel in the next 15 minutes, hour, 3 hours, etc.

19. It was really hard to have to give up: One piece bathing suits and low cut dresses. Female pumpers will understand.  Oh, and cereal.  And money.  Diabetes is expensive, yo.

20. A new hobby I have taken up since my diagnosis is: Blogging. This is a really new hobby!

21. If I could have one day of feeling normal again I would: Eat all the pasta without a worry in the world.

22. My illness has taught me: A lot of stuff.

23. Want to know a secret? One thing people say that gets under my skin is: See number 14.

24. But I love it when people: Ask questions and actually listen when I explain what I live with, my pump and CGM, etc.

25. My favorite motto, scripture, quote that gets me through tough times is: Tomorrow will be a better day.

26. When someone is diagnosed I’d like to tell them: Diabetes is a pain in the ass, there’s no sense sugar coating it (Pun intended). But it is manageable and even though it seems like you are being inundated with information right now, in just a short amount of time, all of this will become second nature. You can do this. And if you feel like you can’t there are tons of people both online and in real life who are happy to support you, answer your questions, or listen if you need to vent.

27. Something that has surprised me about living with an illness is: That even though there are people around for support, it can be very isolating. That’s why I am so grateful for the DOC and IRL D-friends I have. They “get it”.

28. The nicest thing someone did for me when I wasn’t feeling well was: My college roommate took me to the hospital and sat with me for hours in the ER on what was a pretty useless ER visit (Something I could/should have handled on my own, another blog for another day). Also, my husband does nice things all the time – getting my meter for me, checking my CGM receiver when he thinks I’m not looking, grabbing me some juice, starting dinner when he’s not hungry yet so I can eat/won’t go low, etc. I’ll keep him.

29. I’m involved with Invisible Illness Week because: My blog isn’t so invisible, so why not?

30. The fact that you read this list makes me feel: Happy and hopeful that you weren’t terribly bored.

 

Have a great weekend, everyone!

Writer’s block.

I feel I’ve been pretty quiet on the blog and twitter fronts.  I’ve been busy wrapping things up at work (I’m starting a new job in two weeks!) and by the time I get home, the last thing I want to do is sit back down in front of a computer to write a blog post.  Also, I’ve felt a bit of “writer’s block” when it comes to blogging.  There isn’t really anything going on in my D-life right now.  Things are going well, my blood sugars are behaving for the most part, and I’m still focusing on getting my body baby-ready.

So, I am leaving my blog open to topic suggestions.  Is there anything you’d like to know about me?  Doesn’t necessarily have to be Diabetes related.  Leave me a comment!

Have a great Monday!

Doomsday Preppers – Type 1 Diabetes Style

The other day my husband was poking around on the interwebs and came across a forum where someone was discussing “Prepping” with Type 1.  This prompted him to ask me if I had ever thought about it, which lead me to say I’d be screwed and he has permission to eat me should he ever need to.  We used to live in a hurricane prone area, so one would think that I’d be prepared but the great thing about hurricanes is…you usually know they are coming.  Of course, since the husband kinda digs me, he decided to come up with a plan should the crap hit the fan due to a fire, blizzard, alien invasion.  So, without further ado, here it is…

A Guest Post by Laura’s Husband

The funny title and all joking aside, I wanted to try to make an informative guest post about “prepping” – an often sensationalized topic in this day and age.  I wouldn’t say that Laura and I are “preppers” in the sense of the pop culture stigma.  However, I was a Boy Scout when I was a kid and as the motto goes – I like to “Be Prepared”.

In case you’ve seen it, please know that I don’t like the TV show “Doomsday Preppers”.  I think they highlight more of the eccentric personalities of prepping more than providing any useful real world education.  I am however a big fan of TV shows like “Lost, “Revolution” and movies like “Castaway”.   So I ask – What have you done to help prepare yourself or your loved ones for any real life emergencies related to the treatment of diabetes?  How about a situation like one that may come up on TV or in the movies?  Those are obviously the extreme and if you think about everything up to that extreme – you’ll be prepared for anything in between.

Preppers often organize their preparedness into a number of different “bags”.  I thought it would be good to create a quick primer on these different types of bags and some of the situations where you might like to have them with you.

Day Bag
This is most often your purse, a small backpack, or a laptop case – something that you have with you at all times.  Men – this is not a “man purse”, it’s a satchel.  Indiana Jones wears one.

Most T1 diabetics are already great at keeping their “Day Bag” stocked out of necessity.  Obviously you’d keep your daily insulin, meter & test strips, syringes, alcohol swabs, pens, tips, and glucose tablets here.  Laura likes to keep some small snack foods in her purse, such as a granola bar or a rice crispy treat.  Maybe some small candies like Smarties.  Not ideal ways to treat lows, but there if you need them.

Get Home Bag

I like to think of this bag as the bag that gets you through the 12 hours you get trapped in your car on the interstate during an ice storm.  This isn’t something that happens often where we live, but when it does happen every few years it is crippling.  This is a bag that is kept in the trunk of your car.

Related to the D, this bag might have a reservoir, an infusion set, more syringes, lancets, more pens and tips, some extra pump batteries, maybe a spare meter and test strips.  If you’re not carrying your Glucagon in your Day Bag, one would be here and you would tell everyone that its there.  This would also be a good place to have more snacks and maybe a few bottles of Coca-Cola and obviously bottled water.  This is an area where some extra care is needed, especially in the dog days of summer where a soda might explode due to the intense heat.  I don’t care what Mythbusters said, it is totally possible.

Since folks may not be used to having a bag like this in their car, this bag might also have some things like comfortable shoes, extra layers of clothes, gloves, hat, sunscreen, headlamp / flashlight, knife / multitool, dust mask / handkerchiefs, matches / lighter, extra money (around $100 recommended), etc, etc, etc.  Laura currently works about 9 miles from our house.  This bag should have the supplies needed to literally walk those 9 miles home if needed.

Bug Out Bag
The one that gets made fun of the most… but be honest – if your house caught fire, do you have a bag ready to go at a moments notice that will help you survive the next 48 to 72 hours related to T1D?

One of the best things you can have in this bag is a copy of all your prescriptions and a thumb USB drive with your health insurance and medical information.  Next is some cash and a credit card to begin replacing anything you might need, refilling those prescriptions, etc.  In this bag are also more infusion sets, extra sensors for your CGM, an extra charger for your CGM if you have one, more batteries, more Glucose tablets, more syringes and most importantly – Insulin.  Unfortunately insulin is the biggest challenge with prepping for someone with T1D.  It’s recommended to stay cold, has an expiration date, and once opened needs to be used in a month or so.  This bag should have a small cooler or something like an insulated lunch box for your insulin.

The exit plan from your house is completely dependent on the situation at hand, but if time allows there are 3 stops that are made and all can be done in less than a few seconds.

1) Grab the B.O.B. (obviously the bag, not the fun times B.O.B., but hey, I’m not one to judge your priorities)

2) Grab insulin from the fridge and ice packs from freezer.

3) Grab important papers from the safe such as passports / birth certificates.

In a fire, I might be able to make those 3 stops… maybe not.  Obviously, get yourself and loved ones out if the situation is dire.  But if I didn’t have that bag prepared, there would be many more than 3 stops and probably no chance at making them.

Long Term / Permanency
It’s obviously not likely that something like “Revolution” will ever really develop… but if it did, there would be some significant challenges related to T1D.  Test strips run out, there is no way to keep insulin cool, it also runs out, etc.  Unfortunately, we don’t have the means to buy a ~1 year supply of T1D treatment supplies to keep a stockpile… but it might make sense to try to stockpile expired insulin or those old test strips and meters from the brands you didn’t like or the insurance company stopped covering.  If you find an expired vial, don’t throw it away… clearly mark it and save it.  It may not be as potent as fresh stuff, but if you’re at the end of the rope and your life depended on it – wouldn’t it be better to try than nothing?

For many reasons, I used to think about getting Laura a diabetes alert dog.  Though now that she has a CGM, I don’t really think about it.  Again – it’s extreme from a prepping perspective, but without test strips an alert dog might be a way to help monitor blood sugar.  Unfortunately, you then run into the challenge of needing to prep for your dog!  This won’t be something we really explore as we don’t have the funds to properly train a service animal and with the price and availability of CGM it simply doesn’t make much sense financially.

We’ll save the discussion of burying a cache of insulin somewhere out in the woods for next time.  Just kidding about that last part, but as you can see – being prepared never ends.  You don’t need to be a Doomsday Prepper, but any step you can take to make sure you can take care of yourself in an emergency is a positive step to being prepared!

If anyone has suggestions on better T1D preps, please leave a comment below.  Insulin is by far the area where more thought and consideration is needed.

Until next time…

Laura’s Husband

So, as you can see, my husband is definitely the planner in the relationship.  I even ran out of insulin the other day, so should the crap hit the fan, I’d likely panic or forget something of major importance.  I think it’s a great idea to have a bag ready to go with a week’s worth of supplies that you can just grab and go.  This is something I’ll be organizing in the coming weeks.

Flat tires, dead sensors, and clueless people…

Oh my!

This past weekend the husband and I traveled to our hometown for a bridal shower and bachelor/bachelorette parties for a wedding we are both in.  The 7 hour car ride up was pretty un-eventful, my blood sugar behaved for the most part.  However, once we arrived my one day old sensor started misbehaving.  It wasn’t giving me a trend arrow and was telling me I was in the 40s when actually I was 184.  I was hoping it’d come back to life, but after an hour or so of this naughty behavior, I got the question marks of death so I yanked it.  Kind of a bummer because I didn’t want to have to deal with the first 24 hours of sensor inaccuracy during the shower and bachelorette party, but, such is a Diabetic’s life.

The shower was lovely, however when I went out to my car to leave, I noticed a flat tire.  Oh boy.  Luckily my in-laws live only a few miles from where the shower was held so I was able to get my car there and they went out of their way to get a new tire for me.  I am so grateful for them for doing this and giving up their entire Saturday afternoon to solve my problem.  They are wonderful!

The bachelorette party was fun – we went to dinner at a Hibachi style restaurant.  However, we did a lot more walking than I anticipated so I was low for a good hour.  This led to one of the women making a comment about me eating a couple of cookies.  Something along the lines of “I can’t believe you’re eating.  Aren’t you full???”  ARGH.  I said that my blood sugar was low and rather than pass out, I had to force a few cookies down my throat even though we just ate.

This same woman also told me her grandfather “died of diabetes”, so as you can imagine my patience with her was wearing thin.  I will never understand why people think that in order to relate to your disease they have to tell a horror story of someone who died from complications or lost a foot or whatever.  These stories are NOT helpful.

I did face a few D-related decisions over the weekend.  To prevent my CGM alarm from going off at the shower since I knew I’d be eating a lot and it would be a guessing game as to how much to bolus, I turned the high alert off.  I stayed in the low to mid 200s pretty much all day, which, not good.  But, it is what it is.  Hindsight is telling me I probably should have done a temp basal, but live and learn!

While getting ready to head out for the bachelorette party I had to decide if I should bring my meter or CGM as both did not fit in my small, going-out purse.  I chose my meter since I was still within the first 24 hours of my sensor and, well, I trust my meter more.

All-in-all it was a good weekend.  Traveling is just tough with diabetes.  This weekend I’m going to visit my dear friend in NYC and I am determined to have a good blood sugar weekend.  I think it will be much easier since I’m obviously much more comfortable with her than I am with a group of women I’ve only met once.  I have my endo appointment on the 14th and I don’t want last weekend and this coming weekend to mess up my a1c!

I have a special guest blog post coming tomorrow, written by the husband.  Stay tuned!

The day I lost it at the grocery store…

Yesterday I had a little bit of excitement at the grocery store.  As I was on my way there, I was chatting with my sister on my phone and we were mid-convo when I arrived so I hung out in the car for a bit to finish up our conversation.  Went into Kroger and after about 20 minutes, my sister texts me that my nephew had received the picture I drew for him (he sent my husband and I a picture in the mail so of course I had to draw him one, because what 5-year-old kid doesn’t love getting mail!?)  Anyway, according to my nephew, my picture was “Impressive”.  Ha!  Want to know what’s not so impressive?  Going to check your CGM and realizing, shit.  It’s not there.

Commence Panic.

OK, maybe it’s in my purse? I actually had the thought to throw it in my purse while I was on the phone with my sister.  I dump out the contents of my purse (which, as any D Lady knows, we don’t carry purses.  We carry Mary Poppins’ bag.  Picture a panicking lady dumping her purse into her shopping cart.  Yeah.)  Not there.

Shit.

I retraced my steps all while freaking out… OMG, we can’t afford to pay full price for a new one.  What if someone sees it and thinks it’s an iPod and swipes it?  WHY have I been dragging my feet on making a label to put on it, explaining that it’s a medical device, reward if found, OMG I suck at life.  Ohmygod, Ohmygod, Ohmygod.

My heart was racing.  After not seeing it in the spots I had been, I go to the customer service counter, nearly crying, asking if it had been turned in and if they will make an announcement.  The woman does, but of course her announcement makes zero sense.  (Really how do you explain what a CGM is to someone who has no idea?).

I’m freaking the hell out.  Texting with my husband and panicking.  I said about 9,000 prayers to St. Anthony (who usually is listening when I lose stuff!).  As a last-ditch effort I think that maybe it fell off while I was walking into the store, maybe, just maybe the Diabetes-Gods will smile upon me and it wasn’t run over.  I ditch my half full cart in the produce section and head out to my car.

Don’t see it in the parking lot.  Fuuuuuuuuu……dge.   Maybe it’s in my car??  Please, please, please, let it be there.  I open the door…and….

FOUND IT.  It was in between my seat and my door.

Biggest sigh of relief ever.

I sent my husband a text that said “FOU D IT”, which he was able to decipher as “FOUND IT” (he’s so smart).  He wrote back that he was in his truck on his way to the store.  (I should’ve made him come and finish up the grocery shopping, cuz man, I needed a beer or something at this point!).

Friends, I was freaked the hell out for a good 30 minutes.  I rely so much on this device and should I lose it and can’t get it replaced under warranty, right now it just wouldn’t be in the cards to replace.  My heart is still racing.

Lesson learned.  Unless I am at home or at work, my Dexcom will stay securely IN something.  In my purse, my boxing bag, cup holder of my car.  The clip it comes with really just isn’t the best and I really do not want to have to have a panic attack at Kroger again.

Laura Fun Fact – I played Jane Banks in my Kindergarten production of Mary Poppins.  On video, there is a shot of me on stage , butt to the crowd, picking a massive wedgie.  I was a classy little kid.

Happy Diabetes Blog Check-In Day, everyone!

Giving diabetes the Stink Eye

I’m annoyed with diabetes today.  Usually I try to let the day-to-day annoyances of the managing the D roll off my back and not get me down.  I try to have an attitude of “it is what it is, deal with it and move on”.  I think if I dwelled on how huge a pain in the ass Diabetes really is, I’d probably be pretty miserable to be around.  Pity party of one.  That being said, I am human and of course I have my days where I just want to throw my hands up and scream at the top of my lungs “This crap really, really sucks!”.

It started last night.  The husband and I were going to have some, ahem, fun-adult-married-couple-time together.  Before going to our chamber of love, I glanced at my Dexcom and saw 92 with a single down arrow.  So I downed half a glass of juice to prevent a low.  Of course, this didn’t work.  A little while later at quite an inopportune time, my Dexcom started yelling at me that I was low.  I felt OK so I ignored it.  A few minutes later the low started to hit me so I had to tell the husband we had to hit the pause button so I could test.  53.  Yay.  More juice for me.  We waited and pillow talked and I didn’t feel like I was coming up so after a bit the plug was pulled on our fun adult time.  The mood was pretty much killed then anyway.  Thanks diabetes, for the unexpected and unwanted threesome.  Grrrr.

Of course after this longer than usual low episode, I over-corrected so my Dexcom was yelling at me all night for being high.  So in my half asleep-ness, I bolused and set up a temp basal and, you guessed it, woke up low this morning.  Needless to say, I was especially slow getting moving this monday morning.

I am also having one of those days where the presence of my gizmos and gadgets is annoying me.

So yeah, I’m cranky pants.  I wish we could just take a day off from diabetes.  I know tomorrow will be a better day, but for today, you get the stink eye from me, D.

Not my dog. Kinda wish he was though.  Image from the google.

Not my dog. Kinda wish he was though.
Image from the google.

Friday Fives – June 21

1.  I’ve tested my sugar approximately 32,000 times.  I strongly feel that all endocrinologist offices should provide manicures as part of our treatment.  (Pedicures would be nice too)

2.  Waking up with a 106 → and seeing that that’s where I hung out all night makes me feel like I can conquer the world.

3.  I need to get more blue clothing for blue Friday.

4.  Overnight lows while my husband is out-of-town scare the crap out of me.  Thank goodness for my Dexcom.

5.  (Not D-related) I don’t understand why celebs can’t name their children something normal, like “John” or “Jennifer”.  Kim and Kanye have named their daughter “North West”.  Why not name her “We hate you”?  Makes my blood boil (and blood sugar rise!  Ok, not really, but….)