Diabetes Anxieties Where There Should Be None

While diabetes doesn’t take a day off, I am in regards to a diabetes blog post that is – well mostly – I mean diabetes does have a way of sneaking into just about everything.

I went today for my first boob squish.

Turning 40 isn’t all about black balloons and jokes about being over the hill.

To be honest I didn’t care so much about the number although I was sad not to spend my 40th birthday with my besties either in CA or those back in TX. I was fortunate enough to have made a couple of friends here that surprised me with a frog for my garden and some pre-filled Sex On The Beach shot glasses. My actual birthday came and went with little fan fair and that was fine. I’m saving the big celebration for my 42nd birthday – after all 42 is the answer to life, the universe and everything.

Back to the boob squish.

At an annual physical shortly after my birthday my new doctor handed me a form to schedule my first mammogram. That was on May 30th. Between that day and today I had met a women that has stage 4 breast cancer. I shared that story a few posts ago. I had meant to schedule my appointment right away. Actually, I had scheduled my appointment but then something came up and I had to cancel. I never called to reschedule.

Why not?

Time. Or Fear. Not sure which or how much of each played a part in my procrastination.

Either way I hadn’t rescheduled. Luckily the clinic called me earlier this week to remind me.

I scheduled the appointment for today. Best get it over with.

I woke this morning knowing I’d go in and have my boobs smushed today and then get some results sometime later.

I have no reason to be fearful. It wasn’t the physical pain that made me so. Despite what my husband thinks I actually have a very high tolerance for pain. I mean I did push a child out my lady bits and then have two C-sections after my daughter; and after both I was home vacuuming and cleaning and taking care of other children without the use of narcotics.

I have no reason to think my results would be anything but normal. So why did I spend the day anxious?

I think maybe its the idea that there is always the chance they wouldn’t be normal and then I would know.

Maybe having to think about the possibility of an abnormal result is just so scary to think about. When I think about my own mortality I don’t think about me. I think about my kids. I wonder who would be able to take care of them if I wasn’t here. How would my husband manage? We have no family here. And on top of having no family here we have no family that understands diabetes. My older sister gets it a bit and my mom has cared for my kids a couple of times but never without some big issue popping up and her getting flustered. None of my husband’s family understands any of it. I don’t blame any of them. It’s hard to understand when you don’t live it each day. So when I took my first shower of the day I tried to shake all the ugly ‘what-ifs’ from my head. Then I took my second shower – the one I had to take 10 minutes after the first because I put deodorant and perfume on after the first (you can’t have deodorant or perfume on for the exam). I hope now that the exam is done I will relax a bit and for a while at least not worry about my own mortality.

The exam itself was no big deal. No pain or discomfort. The technician was super sweet and she chatted pleasantly with me while adjusting the twins (individually) as needed.

After all was over – all the squashing was done – I felt much better. It’s done now. On to grocery shopping and soccer.

With Chad out-of-town it was also the most four play I’ve had in a week.

Anyway – this is just a post to remind all my friends to make the necessary appointments. For us ladies over 40 the boob squish takes all of 15 minutes and if you’re lucky you are given a heated gown like I was, which was good because the exam room was freezing!

And dear diabetes – can you just let off for a bit – let me have the normal boob squish anxieties without you popping your asshat head in.

 

 

Normies

Who is a ‘normie’?

Basic answer – a person whose pancreas produces insulin AND their body knows how to use it.

Based on this basic answer anyone who has Type 1 diabetes, Type 2 Diabetes or LADA is not a normie.

I’m a normie. I wish I wasn’t but only because I’d like to take what makes my kids non-normies from them as my own.

Before you get all in a huff and puff thinking I assigned the label to myself or others and therefore also assigned the non-normie (not normal) label to my kids and those with diabetes let me be very clear. I did not.

I have spent many years being careful not to call my kids ‘diabetics’ – not to label them as different or abnormal. I have always referred to my kids as ‘having diabetes’ as in ‘she/he has diabetes’ not ‘she/he is diabetic’.

Does it matter?

To many PWD (people with diabetes) it doesn’t matter, but to my daughter when she was first diagnosed at age 9 it did. My youngest (dxd at age 2 a couple of years prior to my daughters diagnosis) being only 4 when my oldest was diagnosed had not given it much thought – he was more concerned with his lego mini-figures and action figures adventures then how he would be defined by a disease.

My daughter at age 9 (and well beyond her years in reasoning and understanding the human condition) refused to say she was a diabetic. She was willing to own diabetes but not willing to let it own her. (Those were her words shortly after diagnosis – in many ways I wish I was exaggerating my daughters understanding of things because at 14 she is often smarter than me and can outthink me in a heartbeat). Thus we consciously choose not to label her as a diabetic. We had not referred to our youngest as a diabetic previously either but mostly because of the Children With Diabetes website that I found shortly after his diagnosis – the title of the organization stuck with me and thus I had a child with diabetes vs a diabetic child. It wasn’t a conscious choice before my daughter was diagnosed.

So now where is this ‘normie’ coming from?

It came from an over-night diabetes camp that my youngest attended a couple weeks ago, my daughter attended last week and that my middles is attending right now. It is a 5 night 6 day camp in the middle of nowhere surrounded by lush forests and glazier run offs at the base of one of the Unites States tallest mountains (which happens to also be a stratovolcano and when I googled the mountain to learn more I learned how incredibly dangerous an eruption of the volcano would actually be – I may not sleep tonight – some things are best left unknown).

Getting back to ‘normies’ and camp (while trying to forget about decade volcanos and lahars).

My youngest didn’t mention ‘normies’ at all when I retrieved him from camp. This may be because he didn’t think much of it or the terms wasn’t used by the elementary kids. Prior to getting custody of our kids the parents attend a closing camp fire event. Each cabin (group of same-sex kids that will be entering the same grade in school) performs a skit or song parody. The elementary kids all did a skit and each was about 20 seconds long. The high school kids mostly all performed a song parody. In a couple of the performances I heard the term ‘normie’.

I didn’t have to ask what ‘normie’ meant – the context of the label as well as the root word ‘norm’ gave it away. I didn’t think much of it. I know what an all diabetes camp means to my kids. While at camp they are the norm so those without diabetes would be outsiders and at this camp there are very few outsiders and those that are there are volunteers who likely have a connection to diabetes such as a child, spouse, or sibling with diabetes – all campers have diabetes.

On the way home from camp my daughter received a text. When reading the text she laughed out loud. I asked her what was so funny. She told me people like me wouldn’t understand. The reason I wouldn’t understand was because I am a normie. I never did learn what was so funny. It was an inside joke and I suspect likely something about parents of kids with D being overbearing schmucks. Despite my best efforts I admit to occasionally earning that label.

The moral of this story – no matter how hard I try I will never truly understand all that goes with not being a normie.

 

 

 

 

It’s Not You – It’s It

alexphotoFor at least the last three weeks my middles has been high.

Above 200 almost consistently. So this is the end – the real end of the honeymoon stage.

He was diagnosed almost a year ago – Aug 1st of 2013. A day that will live in infamy along with Feb 7, 2007 (Sugarboy’s diagnosis date) and April 19, 2009 (Sweetstuff’s diagnosis date).

His diagnosis date wasn’t as traumatic (at least not for him) as Sugarboys (nearly lost him) or Sweetstuffs (required 1 night in hospital for high ketones and dehydration). Middles was diagnosed after a confirmatory OGTT (oral glucose test). He had failed the same test in June of 2013 and the second test was to confirm that his Tcells had truly begun to walk off the job. He wasn’t hospitalized and didn’t require any IV anything. He didn’t even start insulin for another week or so and even then it was only 1 shot of long-lasting insulin. No meal time insulin for another 2 months.

For the last almost year he has been on smaller doses of insulin than even his younger brother (7+ years in, but half his size). Over the last few weeks I have had to nearly double all his ratios of insulin – correction factors, carb ratios and basal amounts. (Sorry for those not in the know – lots of pump/insulin jargon there – if you want to know what any of that means message me). Seriously DOUBLED it all. Still he is hovering in the low 200s most of the time. Today I will increase his basal more.

I do my very best to keep my remarks to him after hearing a blood sugar result as non-accusatory as possible.

It isn’t his fault. I know that. I try hard to make sure he knows that.

It is true that of all my kids he is the most likely to ‘cheat’. To eat ‘little’ things without dosing (a tiny cookie that is only 7 grams, an 8 oz glass of milk that is 12 grams, a granola bar that is 11 grams). In the past he would just forget he could/should dose. But that isn’t the case the last couple weeks. He is well aware of how many highs he is having and has been diligent about dosing. That doesn’t mean he has stopped all the snacking – now he is just dosing for the ‘little’ things.

Some of the highs may be because he does snack so often – never allowing his body to catch up but that doesn’t account for the morning numbers in the 200s or other fasting numbers in the 200s. His body just seems to be becoming more insulin resistant.

He is a scrawny kid. All skin, bones and muscle and he is always hungry.

I can’t imagine how all this plays with his emotions. I hope he isn’t feeling like he is failing. It isn’t him. It’s diabetes and diabetes is an asshat.

He will put on his Dexcom again today and we will watch the trends. See where he is going and when. We will also try over the next few days to not snack and do our best at carb counting at meals. Please wish us luck.

 

 

Taken Daily As Needed

So far this summer my daughter had two friends visit from CA, I took the kids and the dogs to CA to visit friends, my youngest had his first sleep-over in CA and diabetes was an asshat – not once but twice at two different sleep-overs, I was bitten by my cat while at the vet discussing quality of life and the bite got seriously infected requiring IV antibiotics and oral antibiotics as well as heavy pain meds, both my dogs got sick with diarrhea, I had to say goodbye to my elderly cat, my youngest attended diabetes camp last week, my oldest is currently at diabetes camp, and my middles will attend diabetes camp next week.

This summer has brought good times and bad times.

Recently a friend was channeling Dickens’ on Facebook and since his post beginning with “It was the best of times, it was the worst of times…” I have been thinking of what the summer has brought thus far and trying to acknowledge that with the good there is the bad.

I am embarrassed to say that I have never read ‘A Tale of Two Cities’ thus I have no intentions of trying to dissect the book and apply it to this post or our lives – its more the fist paragraph of the text which I have read multiple times. I believe I was supposed to have read the book sometime back in high school but I likely winged it by reading cliff notes. Sometimes I wonder how I graduated at all with all the winging I did my first 2 years of HS.

Sorry digressed.

Things can’t always be sunny. I try to stay positive and put only positive energy out into the world and more often than not I succeed. Still I sometimes fall, stumble really and my world overwhelms me. When that happens all kind of negativity escapes and boomerangs back to slap the crap outta me. That’s where I am right now. Being bitch slapped by the crap I sent out into the world.

Let me first say that I feel stupid when I get all whiny about cat bites, lost pets, loved ones who don’t know how to love me when I’m not at my best, kids who don’t always listen, sick dogs, and a messy home. I feel stupid because there is so much to be thankful for and there are so many bigger things happening around the world like civilian planes being shot out of the sky, thousands dying in various wars in the middle east, and droughts that threaten our food supply and the livelihoods of so many farmers – not to mention hardships being experienced by friends with sick parents or spouses, financial woes, and/or other medical issues for themselves or their children.

Knowing all the other stuff is happening and I’m feeling overwhelmed by the goings on in my own life adds guilt to my list of woes. How stupid is that. I should just be able to shake it off. Choose to be happy. Suck it up. Etc. Etc.

I’m not sure those who have never been in a real funk understand that the harder one tries to just ‘shake it off’ the deeper the hole seems to get. The inability to simply ‘be happy’ leads to feelings of failure and more guilt. Who am I to be sad? I have a fully functional pancreas, a beautiful (albeit cluttered) home, a fridge and cabinets full of food, a van to take me places and the money needed to fill the tank, three amazing kids, dozens of friends both IRL and who live in my computer, and I live in a war free country. Recognizing all I have does help but it doesn’t fix the chemical/electrical issues happening in my brain that cause my funk.

I go through this every so often. Sometimes a year will pass, other times it will be only a few months. Sometimes long naps, long walks and various forms of chocolate will end the funk. More often than not its the laughter of my friends and/or kids that will bring me to a peaceful place. I try to put really wonderful moments in a special place in my head and heart so I can call on them when I need them most. Like a time I was on a spinning ride with some friends and one was about to vomit thus causing another to search through a dozen different pockets in her jacket for a dog poop bag or the time I was playing pictionary with friends and I was supposed to be drawing ‘gas mask’ but my friends were calling out ‘ass face’ (there may have been adult beverages at that gathering), or recently when my daughter was asking to get the cartilage of her ear pierced but instead said ‘cleavage’ to her dad and I (her dad looked at me seriously and said “did she just say cleavage?” – oh we laughed so hard) or the time years ago I took my nieces and sister to the Texas coast and told them we would go to ‘Joes Crab Shack’ but my 9-year-old niece thought I said ‘Joes Crap Shack’ which then resulted in all the kids in the car (5 of them aged 5-9 years old) to ask ‘crap’ questions; ‘can I have some more butter for my crap? Do you have crap cakes? Id like a pound of steamed crap. This is the best crap I’ve ever had. etc’, or a moment like I had in CA with friends recently in which I was sharing a recent story I read about a guy who farts on misbehaving children in stores – my friends and I were laughing so hard a few of us may have almost peed. HERE is the fart story so you can laugh too.

My point – sometimes laughter really is the best medicine and I hope you also have some stock laughter you can call upon when needed.

***(Sometimes laughter is not enough and pharmaceuticals are helpful/necessary – please if you are under a doctor’s care and using medications to help with depression do not change your medical treatments without consulting your doctor.)

***If you ever get a cat bite – one that is a puncture wound so that when the cats tooth releases your flesh the wound closes – go to the doctor immediately. Cats carry very dangerous bacteria in their mouths. The bacteria get caught under the skin with a puncture wound and it is not possible to clean the wound, thus the bacteria multiples quickly. Those little beasties are serious asshats and will cause a terrible infections without medical attention – an infection that can require hospitalization to fix and could require surgery. This is true for all cats – even your own.

*** That song ‘Happy’ by Pharrell Williams actually causes me to become homicidal. While ‘Don’t Worry Be Happy‘ by Bobby McFerrin actually does make me smile.

(I refuse to share a link to ‘Happy’ cus Grrrrr.)

***This post is really just a way to clear my head.

RXphoto

Wherever You Go, There You Are

Hi my name is Tina and I have been a Dmom for over 7 years. My last cry was Saturday.

Diabetes meet-ups are wonderful. While I have never been part of a 12 step program I have seen meetings in movies. I imagine those who attend such meetings feel a similar longing for understanding and acceptance and hopefully find a sense of calm in attending a meeting.

Monday evening I (along with some other fabulous parents of children with diabetes) arranged a meet-up for kids attending a diabetes camp this July. The turn out was good, about a dozen families came with their cwd and siblings. The kids played in the arcade as parents visited. It was great when the director of the camp and a counselor came to say hi and answer questions – totally unexpected as this was an unofficial meet-up and not camp sponsored. Having camp staff available to answer questions for first time parents was a real treat. The kids met other kids attending camp and that will hopefully make camp a little less intimidating day one.

A couple of hours after the meet-up I met up with two friends. One of whom also attended the camp meet-up. She isn’t as accustomed to diabetes meet-ups so when she said it kind of felt like going into a support group I could completely empathize. I remember all too well those first few diabetes meet-ups I attended and in truth they do often begin with what sounds like a support group introduction.

Name, age of cwd, and how long in the diabetes club.

It’s common for the nuts and bolts of diabetes to be discussed – what kind of insulin pump, CGMs, 504 accommodations, even the dreaded A1C (hopefully with no judgments from anyone at the meeting). Then if given the opportunity the conversations dip into the emotional side of diabetes; fears, perceived failures, difficult family and friends, hormonal teens, and the roller coaster crazy that is life with diabetes.

This last meet-up was short – two hours total. I don’t know that any of those in attendance got to the emotional side. It wasn’t really the right venue for the emotional stuff, it was loud and chaotic but hopefully also a little informative and really was for the kids more than the parents and I’m fairly certain connections were made. I know Sugarboy met another 5th grade boy who was painfully shy with adults but living it up with my boy and another 5th grade girl. They have hopes of being in the same cabin at camp.

Many families with diabetes never attend a diabetes camp, don’t attend conferences and don’t participate in organized activities. They get their diagnosis and continue on with life with diabetes riding in the side car. There is nothing wrong with this lifestyle. I have many adult friends with diabetes where this was the norm when they were diagnosed 20, 30, 40 years ago. I have these friends because at some point they found their way to the diabetes online community. They found other PWD online. They connected, and some, for the first time after 20 or more years with diabetes realized they really were not alone; there are others around that fight highs and lows, ignorance and even discrimination. As well as others that worry about complications or deal with complications. There is something so powerful in finding out you’re not alone. It is empowering. At the same time knowing you’re not alone doesn’t mean you have to be as involved in the diabetes world as others.

As a parent of three children with diabetes my hope for my kids is they find a place they are most comfortable. Maybe that place will be up front and center in the diabetes world. Maybe that place will be two different worlds – one with friends and co-workers with fully functional pancreases and another with other PWD. Or maybe that place will be one where diabetes rides in a side car and isn’t given any more attention than necessary to stay alive and thrive. Every PWD and CWD is different and just as insulin doses vary so does the desire for other people with diabetes in their lives.

My hope for all my diabetes family, which includes all people and kids with diabetes regardless of type of diabetes is that they find a sense of calm and belonging in their lives with as much or as little diabetes as they are comfortable with.

If you are not currently connected to a diabetes community but would like to connect in others IRL (in real life) or online I recommend the following:

  • Contact your local JDRF office and ask if they are aware of any meet-ups or groups in the area
  • Ask your child’s endo about local groups
  • On Twitter search the hastags: #diabetes #DOC #DSMA
  • Check out the Children With Diabetes forums – there are many different forums basically anything you can think of regarding all things diabetes has a forum
  • Check out TuDiabetes – by the Diabetes Hands Foundation – again regardless of type there is something for everyone
  • Consider attending conferences in your area or beyond. There are too many for me to list so I suggest doing a search for ‘diabetes conferences in (your area – list closest major cities)’  My favorite conference is in Orlando each July. It is the Children with Diabetes Friends for Life conference – although don’t let the name fool you – they have an adult with diabetes track as well

(Just a side note – while most everyone in the online community is there to support and be supported there are a few that trickle in that either don’t actually have diabetes or any connection to it that simply like to troll. Thus when entering the online community be weary and take the advice you give your kids when online – don’t share too much personal information like address, full names of family members, etc.)

‘Wherever you go, there you are.’ Is a quote and book by Jon Kabat-Zinn. Jon is a professor of medicine and teaches mindfulness, meditation and stress reduction.