I'm not a new kid on the block

Isn't it funny, that so many non-diabetics let us diabetics know how to treat our disease? They send us emails concerning healthy diets, they point out natural cures like cinnamon (no, it does not replace insulin, sorry) or some organic coffee to lower your bloodsugar. Sometimes I feel like a real idiot for not knowing about these simple cures.. Where was I all that time?

I read this letter today, written by someone with D. It says exactly how I feel when it comes to "helping" someone with diabetes. It could be interesting to read. After all, don't we all know people with this condition? Excuse us for the inside jokes among diabetics. We are allowed to make those jokes. My friends know why we look out for knee high shorts on sales. Those are personal insider jokes, not jokes non-diabetics may make..

Diabetes Etiquette for people who DON’T have diabetes

• DON’T offer unsolicited advice about my eating or other aspects of diabetes: You may mean well, but giving advice about someone’s personal habits, especially when not requested, is not very nice. Besides, many of the popularly held beliefs about diabetes (You should just stop eating sugar) are out of date or just plain wrong.

• DO realize and appreciate that diabetes is hard work: Diabetes management is a full time job that I didn’t apply for, didn’t want, and can’t quit.

• DON’T tell me horror stories about your grandmother or other people with diabetes you have heard about: These stories are not reassuring.

• DO offer to join me in making healthy lifestyle choices: Not being alone is one of the most helpful things for me.

• DON’T look horrified when I check my blood sugars or give myself an injection: It’s not a lot of fun for me either. Checking sugars and taking medications are things I have to do to be healthy. If I have to hide while doing so, it makes it much harder for me.

• DO ask how you might be helpful: If you want to be supportive there may be lots of little things I would probably appreciate your help with. However, what I really need may be very different from what you think I need, so please ask first.

• DON’T offer thoughtless reassurances. When you first learn about my diabetes you may want to reassure me by saying things like “Hey, it could be worse; you could have cancer!” this won’t make me feel better. And the implicit message seems to be that diabetes is no big deal. However, diabetes (like cancer) IS a big deal.

• DO be supportive of my efforts for self-care: Help me set up an environment for success. Please honor my decision to decline a food choice, even when you really want me to try it. You are most helpful when not being a source of unnecessary temptation.

• DON’T!!! Peek at or comment on my blood sugars without asking me first: These numbers are private unless I choose to share them. It’s normal to have numbers that are sometimes too low or high. Your unsolicited comments about them can add to the frustration, disappointment, and anger I already feel.

• DO offer your love and encouragement: As I work hard to manage my diabetes, sometimes just knowing you care can be very helpful and motivating.

At your service

It's been over a year since we first discovered some unwanted puddles of water in our house. To be more specific, we would find moisture under the doormat in our hallway. We had no idea where the water came from, but we were not happy with the situation at all. At that time, we had an Italian student staying with us for a couple of months and we didn't feel like breaking up floors to find the leak during her stay. So we waited and tried to figure out what had gone wrong underneath those tiles.

Winter came and the days got colder and shorter. The moisture was still there and we had problems with our heating. Looking into contacting our insurance company, we hoped they would come up with an answer in where the leak was and how we could fix it without renovating the whole house. They sent their "best" employee en he walked around the house for over 1 hour, listening to the sound of running water in his headphones. We were a bit startled about the whole procedure, but he ensured us that was the best method available. He pointed out towards the tile where the water would pile up and smiled when he said: the leak is definitely underneath this tile! Hmhm... wow.

The insurance company agreed with his statement and they reimbursed us for the cost of replacing that one tile and having the leak fixed. The thing was: we couldn't find a plumber right away, to do the job. So some more months went by. In September, we decided the problem had to be fixed by the time we had to turn on the heating again. So finally this plumber stopped by to take a look. My husband had already opened the flooring and guess what: no leak... Apparently, the water problem was not caused by a leak in the pipes, but by an overflowing basement in the neighbor's house.. Bummer!

We turned on the heating to prepare ourselves for colder nights. Problem! the pressure kept falling down and the heating wasn't working correctly. So we called the plumber again and he gave us some ideas on what could be wrong. Guess what: a leak in the heating pipes.. There we go again, we thought, but we didn't give up. My uncle is a handy man and he thought along with us and the plumber. Does it come as a surprise to you, that my husband was the one who eventually found the leak? It was in our bathroom and it looked pretty bad. So we now not only had open flooring in the hallway, but in our bathroom as well. Thank goodness the plumber stopped by to fix the leak and turn the heating back on. Mystery solved. For now. We hope..

About time

What would you do, if someone gave you the opportunity to go back in time and change things? Would you happily take the offer and wipe out all of your mistakes? Or would you think things over, nod your head let the past remain part of your life?

Life is your own book, a slate to write on. So many stories to be told and so many others you would never want to share. You sometimes wonder what your life would have been like if you had made different decisions. What would your life be like, if you had chosen a different school or career? What if you would've married your first love? Maybe life would've been different if you had started to work right after college instead of having gone abroad for 13 months.

Just give it a thought. Would you go back in time and change your life story?

It runs in the family, they say..

"So are there any other diabetics in your family?", she asked. In fact, there are. Well, some are no longer here. There was my grandmother on my mother's side. She passed away a long time ago, probably because of T2 related complications. There's my mom's sister and brother, who both have diabetes, as in T2 and prediabetes. On the other side of the family, there was my great grandfather, who was a T2 diabetic as well as my grandfather and some even say my grandmother was a T2 as well, but I'm not sure about that. There's my father's sister, who has been shooting up insulin for 14 years now and there's another sister who has to "pay attention" to what she eats, if you know what I mean. And then there's the family dog... Her name was Charlotte. Or Bollie. She had different names. She was quite old when she got diagnosed with diabetes. Her knees showed infected wounds and her eyes had known better days... I knew nothing about diabetes in those days. But I could tell the dog was suffering and hurting. She must have been so thirsty and tired and she probably urinated quite a bit. I can't remember, but I do remember the sadness in her eyes.

"So did the dog get treated for her diabetes?", the nurse asked.. I got quite emotional over that question. That's how I feel when it comes to diabetes. We hold on to one another because of the mutual bond diabetes brought us. Even pets with diabetes are welcome in the group. Because we know what it feels like. Because we can relate to each other without words. My vet told us, our sighthounds could never get diabetes. It's not possible in that breed. Would that work for people too? Would there be some race that will never get diabetes?

No comments

Voilà! I did it. Welcome to the life of a T1 diabetic.

Is it that strange?

I'm scrolling through pictures people have posted on FaceBook. Pictures of their homes, their family, their vacation in some far off place. That's how it goes nowadays. People let you look into their lives, even if you have never met them in real life. You get to know them by their snapshots. Is it surprising to you, that they only upload the pictures that make them look their best? If you're lucky, nobody else will post pictures of you in your right-out-of-bed-look. Only the best shots will make the FaceBook album: dressed to the nines, happy smile, beautiful outfits and straight from the hair salon: picture perfect families. Because we all want to look our best, right? Right?

It's like getting your school report. You tell whoever wants to know, what your grades are. That is, if those grades are good enough to share. If they are not that good to show off, you won't mention them, would you? It's not like you would step up to people and say: hey, wanna know about the bad score I got on my mathematics test? You keep the scores to yourself and you hope nobody will ask about them.

You can tell people about your bad day at work. How crappy it was and how you hope it will end soon. Will you also tell them, that bad day was caused because you went to bed late after an argue with your husband? Is it to their concern that you didn't sleep all night and you want your colleagues to take the blame for your bad day? No, FaceBook will only state: terrible day at work.. and your followers will get back to you saying how sorry they feel for you and that they hope you will have a better day tomorrow. Because we don't want to share what went wrong..

Trying to show the best of us, is what we were brought up with. It was important to our parents, to show how successful you were. It probably makes parents feel better about themselves, if their children do well in school, at work, in their social life. They'd rather not have others know that their son drinks because he can't cope with the high standard life has brought him. They don't want people to find out their youngest got kicked out of school for the second time, so they say he switched school because it had more opportunities. Because we all want to look our best. It is important to us that people have a good impression about who we are.

I'm always happy to share good blood work when it comes to diabetes. I like my numbers to behave and I have no problem typing them down for others to see. Every now and then I even share images of good graphs and "perfect" situations. Because it takes hard work to get those numbers and you put a lot of effort in it. Doctors ask you to do your best and make sure that HbA1c is below 7%. Because you don't want to get nasty complications, do you? They state the importance of having your numbers within range (and the margins become tighter over the years). Not one doctor prepares you for numbers that are way out of line. They don't tell you it is more likely to have off numbers than readings that make you feel good. So you want to live up to their standard. You want your D to be in control. Because you want to look your best. Diabetes isn't easy. It's not always the way you want it to be. It is hard to admit. It doesn't make you a terrible person if you let others know your numbers were way out of range. Then why is it so hard? Why don't we let others see our dark side? I dare you all, to post your worst self pic ever. I challenge you to write on your FB status: "Did lousy at work today. I made my colleagues look bad and I screwed up on a very important job." Don't be afraid about the comments you'll get. I won't fear the comments after having posted a crappy D-day, due to miscalculating carbs for that wonderful cheesecake, high readings, pump sites that stayed in way too long.
I dare you. 

A mother's nightmare

I'm a member of different diabetes groups on the Internet, so every now and then, in between good news, there's also sad news to read. Today, right before lunch, I read the story on little Jillian. Tears were stinging in the corner of my eyes, just by reading her mom's diary. Little Jillian was diagnosed just recently, June 2013. She was a fun girl, going to kindergarten until D changed her life. She would never again be the innocent 4 yo she was before. From that day on, Jillian would need special care and special attention until the day she could take care of herself or until the day a cure for diabetes is found.

If you still think, diabetes is "nothing special" or if you make statements like "at least it's not cancer", well let me tell you this. Diabetes is no game. It's a life threatening disease. It's always there and you must always be on the lookout for highs and lows. Other people have no idea what it's like to be constantly aware of the fact that overdosing insulin might take your life. High bloodsugar can make you extremely sick and may require hospital treatment. Lows can make you lose consciousness as well if not treated right away. The fear of everyone with diabetes, is to not wake up from a diabetic low.. It is scary and although it doesn't happen very often, people do die from unnoticed diabetic lows.

This is what I read on the blog of Jillian's mom.. it made the hairs in the back of my neck stand up immediately. I feel so sad for her loss. I don't know Jillian, nor do I know her family. But I do know this must be any mother's nightmare. Children are not supposed to go before their parents. This little girl was not even 5. She will be missed by so many people. We have to find a cure for this ugly disease. No family should go through such an ordeal. Only 4 months after being diagnosed, this little girl's life was taken. Jillian was in hospital, being treated for high sugar levels. She had an IV and nurses were guarding her. Nevertheless, she died in her sleep. Nobody could save her from this bloody disease.

I have had a discussion with my endocrinologist over CGM. You all know by now, I use a Dexcom continuous glucose monitoring system. It helps me identify lows and highs if my body fails at warning me. And it does fail at times. I do feel most of my lows, but being asleep is always tricky. Having diabetes makes you tired and sometimes catching sleep is more important than spending time in the twilight zone, making sure you are not fully asleep. You want to make sure you guard yourself from going low so you don't sleep well. Because of my Dexcom, nowadays I can sleep better and deeper, because I know it will warn me from unnoticed lows. Just a couple of days ago, I was so happy with my "flatline" on my Dexcom readings... this is how it's supposed to be.
Not the flatline Jillian got..
I wish little Jillian would've had Dexcom equipment. It is not a gadget, like some people dare to call it. It's my life saver. I'm so grateful for my Dexcom. It's not a cure, but it can help me get the best treatment possible until a cure will be found.
Please let all of your love go to Jillian's family now. Their life will never be the same..

She went to bed last night with a blood sugar of 214 and when the nurse tested her at 5am she was 122 which is where we wanted to be. But at 8am when they went to wake her up she didn't get up. Somewhere between 5:30 and 8am this morning she fell into diabetic coma and died in her sleep.

It serves a crowd

There's always something cookin' on the stove or simmering in the oven. Whether it's a hearty dish or a sweet treat: I want to make it! I love the smell of food around the house. I love the heat the oven brings and the goodies on the table when we are having guests over for a night of fun. I (could) fill my days looking for new recipes to try out or writing down my approved recipes on my food blog. It's crazy sometimes, to hear strangers talk about my blog. They are not always aware I'm the person behind the recipes. So their comments are honest and hearing their enthusiasm keeps me going.

My food blog was meant to be a future reference for my girls. I would hate to see my favorite recipes get lost over the years. The original plan, was to make a digital cookbook, 365 days. In the meantime, I have posted no less than 682 recipes! That is frigging awesome! My greatest wish though, is to, one day, have them all printed out in a book. In color, of course. I hate cookbooks without pictures. The pictures are part of the fun and necessary to keep the reader reading. You have to drool over your desk, going through the recipes. Your taste buds need to be tickled and I want to spark that enthusiasm for cooking you didn't know you had in you.

Do you think cooking and eating is like sports? Like in, you can get addicted? I'm not sure... I know what food I like, but I have never had any sort of addiction when it comes to sports. Couldn't live without food or kitchen experiments. Sports haven't killed me, but they haven't actually kept me alive either. Let's stick to what I do best: Cooking and High Heels!