A letter to my Dexcom 7.

Dear Dexcom 7,

I just wanted to thank you for keeping me up all night. It must be nice to stay up all night partying and being loud, and then get to sleep in and not function properly until 11:19am this morning. I wish I could stay up all night and then sleep in, but unfortunately one of us needs to go to work so we can pay the bills.

Thank you for the 2am, 3am and 3:30am fake warnings of high blood sugars, for saying I was 221 when in actuality I was 79 and later 98. Thanks for waking the dog up so I had to take her to go potty at 2 in the morning.

Thanks for the ERR1 message you gave me this morning at work- twice. In case no one else knew you weren't working properly, you made it known by beeping as loud as you could in my cubicle.

I also want to thank you for putzing out on me at only 3 days old. You are supposed to last a week, you jerk.

You just wait until January when I can afford to replace you with the G4; we'll see who's laughing then.

A disease hypothetical question?

There are questions about my diabetes and celiac disease that I inevitably get asked.

When people ask you how "your diabetes is going," how do you answer? When someone new finds out I have diabetes, I am ready for three questions that inevitably follow- the first question usually involves the amount of time I've had it ("did you get it as a kid? how long have you had it?"). The 2nd question evolves around diagnosis ("how did you know you had it?" "what were your symptoms?" "does it run in your family?") and the third question is always the one I dread the most- it evolves around how my diabetes is being managed ("how's the diabetes going?" "is it well managed?"). When people ask that, especially someone you don't know well, how do you answer? Do you give them the dirty low down details? Do you breeze over the question altogether? There's this balance I always want to strike when answering that question; I want people to know the level of dedication it takes to manage this disease, but I don't want to terrorize them, either. I feel in the past, I've done both. I've sometimes glossed over the question with an answer like "Oh, it's going fine" and other times I have given TMI and you can see the confusion/horror on their face. So then I realize I wonder if that 3rd question is actually just a hypothetical question, to be polite? Maybe it's a question like "How are you doing?" The type of question that people don't realllly want to know that you just got dumped, your dog is sick, your car broke down, fill in the blank, etc. They just want you to say "I'm doing fine, thanks for asking," so they can move on to their next task. And then there's the task of deciphering who wants the details and who doesn't. I'm guessing the sales clerk at Macy's didn't want to know about your blood sugar issues when she asked you how your day was going.

I was asked this question by my manager when I told her I had diabetes a few weeks back. I wasn't sure how to answer- I didn't want to scare her with details that might make her think I was going to be a "problem" employee, but I also didn't want her to think it was a breeze and would never interfere with my work. Taken off guard, I think I leaned toward the side of having her believe it would never be a problem, out of fear of being a new employee and worried what she would think of me. Diabetes makes me very self-conscious.

I wish I didn't care what people thought. I wish their assumptions didn't hurt. I wish I had a disease I could keep to myself and not tell anyone about. But that is not the case.

Usually my celiac disease diagnosis is a little easier to hide, at least from strangers. People won't usually find out about it until there is a food-related event, and even then sometimes you can get away with not mentioning it if you don't want to. Until you go out to a restaurant and grill the poor waiter about ingredients, food handling and cross contamination. Celiac disease is difficult to answer questions about. The hardest question I get is "What happens when you eat it?" The reason that I don't enjoy answering this question is because there is no polite way to describe the digestive symptoms it causes. I'm not one to blurt out to strangers "Oh, it gives me the scoots." Nothing like telling a stranger about your bloating, diarrhea and gas problems. I try to glaze over the gross parts and focus about the damage it causes to my small intestine.

At the same time, when I am asked questions about one of my diseases, I don't want to miss an opportunity to educate someone and give them the CORRECT information about the disease, versus the stereotypes they'll likely hear later.

Reducing Risk.

It's Sunday afternoon and not a normal time for me to write a blog. This time of day usually involves chopping, cooking, laundry. I have been doing some of that today, but not much because I'm trying to rest up my back in preparation for another long week. I just thought I'd take a coffee and gluten free scone break from my house chores.

Last night I completed my grocery shopping for food prep today. I went later in the evening on purpose, to avoid the daytime shoppers that pack up the stores. I also prefer to go when there is less traffic on the road. Since my spinal cord injury in July, I have been very scared of being on the road; scared that someone is going to rear-end me. The words from my surgeon ruminate in my mind; that if I were to get into even a minor accident, I could end up with quadriplegia. Quadriplegia occurs when there is injury to the spinal cord in any part between the C4-C7 cervical area. My spinal cord was damaged in the C5-C6 and C6-C7 region, with minor damage in the C4 area that they chose not to fix at the same time as the others (there is risk that a multi-level fusion would not be successful). The 12-15 months is how long it takes for my bones to fuse with the cadaver bones. Until then, what's holding me together are screws on the inside and outside of my spinal cord (see 2nd picture, below). So I am supposed to be really careful for the next year or so and is why I have a long list of restricted movements and activities. Here's a picture I found online that better explains the regions:

photo credit TexasTrialLawyer.com

Since I don't have a picture of my own xray, I found one online that looks just like mine:

photo credit boneandjoint.org.uk

The truth is, I'm scared of being being paralyzed from the neck down. What would that mean to a t1 diabetic like myself? It would mean not being able to poke my own fingers to check my blood sugar, not being able to treat a low on my own, and possibly not having the ability to feel a low due to paralysis. It would mean requiring 24 hour a day care, because of the risk of low blood sugar. It could mean living in a facility due to the special circumstances of type 1 diabetes and needing someone to be available to help me treat my diabetes at any time of the day or night. While I know that many quadriplegic patients may live with a level of independence, I don't think a type 1 diabetic would have that option. And that fear haunts me when I'm driving and I see a car behind me not slowing down fast enough.

I've purposely chosen my work schedule in order to avoid rush hour traffic. I don't drive during rush hour, period. I try to do everything locally and avoid the main highways, which seem to be featured on the morning and evening news everyday for accidents. I'm just simply trying to reduce my risk. I don't text and drive and I rarely talk and drive either. I see too many cars swerving around in their lanes only to see when I pass them that they are texting and not watching the road. I don't want someone who is texting behind me on the road because if I have to slam on my brakes for some reason, they will not be paying attention and run into me. We live in a different world now with cell phones and GPS systems. People are reading their texts, texting back, dialing, or looking at the map/directions on their phone. What they aren't looking at are the brake lights in front of them.

Maybe I'm paranoid, I'm not saying I'm not. But I have a lot to lose and I'd rather be overly cautious than not cautious enough.

Needed: Rest.

Glad this week is almost OH-VER. I haven't slept well most of the week and my back has been hurting, which scares me A LOT. It hurts in the surgical site area, and I think it's from the constant sitting in one position at work. I can't get comfortable at work, with my arms out in front of me typing all day. I keep repositioning myself to find a comfy spot and I can't find it. My boss doesn't know about my spinal cord surgery, and I'm not sure how much she (or any boss) would be willing to accommodate a brand-new employee for yet another medical condition. She already knows about the diabetes and the celiac disease. I just hate feeling like the problem employee. I don't want her to think "great, what have I hired." I am afraid to call my surgeon's office because I'm afraid they will recommend working a reduced work week, to work my way back into working full time. But I can't afford that. And I know for a fact my new job will not accommodate that because they have already stated the company does not hire part-time employees. So I'm planning a weekend of complete and total rest, preferably spent on my back. During the week I'm going to have do try to do less work at home after work (cleaning, cooking, laundry, errands) and focus on rest rest resting my back. I'm so scared one of my health conditions is going to jeopardize my work.

So tonight I made a yummy gluten free meals that I hope will last me through the entire weekend. I had a 2 1/2 lb container of ground turkey from Sam's Club that I thawed but had not made a plan for, so I flipped through my recipes and decided to make Confetti Turkey Loaf before it spoiled. It's very healthy and tasty. That took up 1 1/2 lbs; the remaining pound I used to make a batch of Manwich sloppy joe mix (less healthy, but easy). Then I baked 5 sweet potatoes in the toaster oven.

Here's the quick version of how to make the turkey loaf. Saute onions and peppers in a pan with a teeny amount of oil, then dump in a big mixing bowl. Add 1 1/2 lbs ground turkey, 2 eggs, a chopped up carrot, fennel seed, salt and pepper. Mix it up.

Make 1 cup of cook wild rice (I made it in the rice cooker). Soak the cooked rice in 1/2 cup canned coconut milk for about 5 minutes.

Add it to the turkey/vegetable mix. Throw it in a greased loaf pan. Bake for a hour.

Before

After

Thanks for listening to me this week. I've had a bad week. Between the nightmares and stress, a $4000 medical bill for uncovered services during my spinal cord surgery, and now my surgical area causing me a lot of pain, I'm ready for the weekend.

Decisions, in pictures.

What I wanted to eat for supper.

Then I saw this (notice the 6 hour trending)

So I ate this instead

What I thought I probably should have had for supper

Haven't really talked about this before.

I've been sitting here for a while thinking Should I publish this? Should I not publish this? I don't know why I'm hesitant to talk about this when I've shared so many things.

I'm struggling a bit with an old demon. Night terrors. My nightmares have been coming back and as such, are preventing me from sleeping soundly throughout the night and have also made me dread bedtime. I haven't really talked much about this, but in 2010 I was diagnosed with PTSD after being diagnosed with type 1 diabetes, grave's disease and celiac disease. I experienced a lot of trauma from the multiple life-changing illnesses and being extremely ill for most of the year 2010. In addition to the night terrors, I lost my appetite, I cut myself off from all my friends and family, not even a phone call here and there. I lived with so much fear that I felt like I was going crazy. I rarely left my house and for almost 9 straight months I cried every single day. It's hard to explain without sounding exaggerated, but after the 3rd autoimmune disease diagnosis in a 5 month period and a 2nd unsuccessful heart surgery to correct a heart condition, I lost my ability to sleep, to concentrate, to live normally. That's when the nightmares began; vivid dreams that seemed so real that in my dream I'd tell myself I was just dreaming, but then right after would think oh my gosh I'm NOT dreaming- this is actually HAPPENING. (It wasn't). I had nightmares that ranged from having snakes in my bed, attackers in my house, having my heart stop and tons and tons of dreams that my blood sugar was low while being physically unable to treat it. I dreamed that I was always dying in some way, whether it was someone killing me in my house, chasing me down and killing me, or dying from one of my many medical conditions. In my dreams, I was always alone where no one could save me or find me; where no one was ever around to help me, which is much how I felt in real life, that no one could save me from all the diseases that had plagued me.

The doctor put me on sleeping medication to help me get some much needed sleep. After about a year and a half, things started to improve enough where I wasn't taking the sleeping medication, but since the spinal cord injury diagnosis in July, the nightmares are back and I just can't shake them. I did try counseling but found it too slow of a pace to work. One hour a week just wasn't cuttin' it. I know this stuff takes time, but at a $45 copay for each visit, and really needing to go at least weekly, it just isn't something I could afford to do long-term (I have insurance where you still have copays after you meet your out of pocket maximum). I recently had a dream that was so awful that I woke up screaming. And last night I had a dream that someone broke in my house, and the dream was so real that I sat up on the couch with a hunting knife next to me and I didn't go back to sleep. I was a complete zombie at work today. It's time for me to re-connect with my doctors and see what other options we can come up with. I don't want to be doped up on sleeping pills which don't solve the problem anyway, and I don't want to keep living in a place of fear. I'm wondering if a group setting-type meeting might be a better fit for me. I always associated PTSD with people who went to war or people who were crime victims. I'd be almost embarrassed to go to a meeting and tell people why I have it; it just doesn't seem like it would compare to the tragedies they've experienced. Whatever I do I just know I won't let it get out of hand before I decide to do something about it. I won't let it destroy me like it almost did in 2010. My positive thinking, my faith, and belief that life WILL get better won't let it.

Consider this a segue. I'd rather talk about things that make me happy. Like food.

This is the first week in a while that I didn't have a menu plan in place, nor did I spend my Sunday chopping and food prepping for the week. The end of last week was busy and so was the weekend (two volunteer shifts at church) and next thing I know, the weekend was over. Tonight I made a fly-by-the-seat-of-my-pants dinner. I threw some chicken breasts in a pan and seasoned the heck out of them with a collage of rosemary, onion powder, salt, pepper and oregano. Flash fried with a wee bit of olive oil just until the outsides were slightly browned but still raw inside and threw them in the toaster oven at 400 degrees for 20-25 minutes (this technique keeps them juicy and not dried out). While those baked, I looked in my cupboards and fridge and realized I had nothing that went together meal-wise or made sense, so decided to be creative. I used the same pan that still had the chicken seasonings still in it and threw in a can of organic pinto beans (drained and rinsed), fresh mushrooms, fresh tomatoes, and some jarred organic kalamata olives that have been hanging out in the fridge for a while. I added a few more seasonings and voila

Not to shabby.

Well, it's time for me to wind down and get ready for bed. I'm hoping the bad dreams will subside for tonight so I can get a full night's sleep. I don't like starting my week off so tired.

Your Disease Disaster Plan.

This week I was glued to the news coverage of Hurricane Sandy. I watched the different types of devastation it caused in different states- some got snow blizzards, some got sand, some got wind and flooding. I watched as a New York hospital lost power and their backup generators failed. My mind immediately begins wondering about whether the diabetics and celiacs in the path of Sandy were well stocked up and prepared for the impending disaster. I can only assume that the pharmacies were closed for a while and hospitals were overloaded with patients. What if you couldn't get access to an insulin refill? Do you have enough on hand to get you through for a period of time? If you do have extra in your fridge, do you have a way of keeping it cold in case of a power outtage? Have you notified your electric company that you are an insulin dependent diabetic so that you will be on the list of the first people to have their power turned back on? Do you have a diabetes disaster plan? How about the celiacs- do you have enough gluten free food on hand that if the grocery stores were unaccessable or out of food that you could survive for a while? Because I have bad news for you otherwise- don't count on the emergency food shelves or the Red Cross to have gluten free options for you. Hopefully whether you are diabetic or celiac you've got an emergency plan in place, because in those situations these are additional things you will have to worry about.

I began to think about my situation, and what challenges I might face if there was a a big natural disaster in my area. I'm pretty stocked up on diabetes supplies. I have a good year or more supply of insulin in my fridge, and keep my test strips, lancets and pump supplies as stocked up as I am able to afford. I have coolers and freezer packs ready to go, and I also have a generator. I may or may not even have ammo on hand to defend said supplies (I'm just sayin' you might want to pick a different house to loot). I like to think of myself as a Diabetes Doomsday Prepper, and you may remember reading my blog earlier this year. As for the celiac side, I keep lots of cans of beans, canned tuna, rice, and canned vegetables stocked. I also have cans of Spam stocked since it's a gluten free protein, although I think it's nasty and hope to goodness I never have to eat it.

The show Doomsday Preppers was popular this spring and I hope they bring it back. Nowadays the show I like is Extreme Cheapskates on TLC. Not that I plan on peeing in a bottle instead of flushing my toilet anytime soon, or dumpster diving for food, but I can't say anything bad about those folks cuz guess what, they don't have any debt and I do. They are millionaires and I'm not. So who's the smart one?

While I am not an Extreme Cheapskate, I do like to think of myself as an amateur diabetes cheapskate. I use the same nasty kleenex or napkin over and over until it's riddled with dots and looks like a George Seurat painting. I re-purpose my alcohol swabs by first using them to clean my finger tip if if needs it, followed by using it to clean off all my equipment screens like my iphone, cgm, insulin pump, glucose meter, even my work phone and keyboard and mouse. Until it's dried out. I sign up for any and all free offers for test strips and glucose meters, because I'll use whatever is free before I go out and pay my deductible for my prescription ones. Recently, I signed up for a coupon for a Verio IQ glucose meter and 50 free test strips. Why not? I get to try new equipment for free and free test strips too? Now that's GOLD. And I save money by trying to test my bg less on days when it's stable, to make up for the days when my bg is nutso and I have to test twice as many times. That way it all balances out. Lastly, I have a T1 friend who I swap d-supplies with. I may have extra of one supply she needs and she has extra supply of something I need. Tonight I gave her some of my extra stock in exchange for 2 of her cgm sensors because I'm almost out. Now I'm not saying you should follow what I do, or that these are the right things to do for you. I'm just a person trying to manage my diseases on a reallllly tight budget and sometimes, you just gotta cut corners to make it work.

Do you have any tips for saving money to manage your disease? Are you prepared for a disaster? Did seeing the Hurricane Sandy coverage make you think about your preparedness?