Day 30 - end of the daily posts...

but not of this daily fight to live.
I hope I've shed some light to those of you without T1D, or another chronic illness about life with this incurable, supposedly manageable, life threatening at a moment's notice, infuriating, depressing, unreasonable, irreconcilable, confusing, and annoying medical condition.
I will not willingly let T1D kill me. I will fight with everything I have to keep my bloodsugars under control. I will use what diabetes has taught me to help others and be encouraging, and most of all I will use my faith to help me win.

Day 29 - my life in a few short words

Low, eat, high, treat, low, eat, still low, eat more, level, eat, low, high, treat, and bed.

Even when I have big home-based projects going on, life revolves around maintaining my bgs so I can do them.
Today was a good day, a busy one, but a good one. Thank you, God for these days.

Day 28- alcohol and T1D

I am not a big drinker. I never got wasted before I was legal to drive, vote, or drink. I had my first sip of anything alcoholic a few weeks before my twenty first birthday.
I never really drank much until I got married and felt like I had a safe person with whom I could let go and test my limits. I got sick drunk a few times in my era of delinquent diabetic life. Now I will have the occasional glass of sweet wine, or a fruity mixed drink.
I learned what I enjoy, what I can tolerate, and what messes up my bloodsugars.
I can't really drink most liquors without an extremely fine balancing act which an alcohol softened brain will fail at maintaining. I can have about 8 ounces of moscato with no ill effects. I don't enjoy beer but will drink it when out of options at a social gathering.
Unless my bloodsugars are out of whack to begin with, I rarely drink enough water in a day much less any other beverages outside of coffee, so if I go out to a restaurant, I order water, it costs nothing and I have a refreshing cool drink  rather than another caffeine laced diet soda.
Tonight, I am going on day 5 of 4 hours of sleep at night or less, so I opened a bottle of wine, had a glass of it and am heading to  bed early so I can actually fall asleep before 3am.
As a woman, I am wary on drinking anywhere. As a wife, I make sure one of us is safe to drive when we are out, as a mom, there is no consumption if the husband is traveling. As a T1, I base my choices on how hard I wish to battle the blood.  Some days it's worth the extra blood tests and others, I say forget it and stick to water.

Day 27 making something fun

Before the wonders of the internet, and the development of the online diabetes community, diabetes gear was boring and made me feel old and boring.
 After I stumbled upon the idea of decorating my gear, life got infinitely better. I started with trying to find and pretty-up different containers for my meter, painting the meter, an utilizing Pump Peelz stickers for my pumps, I changed pumps.
This opened up the world of omni pod decorating. It's been so much fun to have little bits of art decorating my skin. No two pods have looked the same I will use temporary tattoos, stickers, or craft paint, and nail polish. I let the media dry, and mod podge over it to seal it. So far, so good. The only pods I don't have now are the ones I've had to send back to insulet to figure out why they failed.
I have used nail polish to paint my meters, and the bit of glittery girly all over this boring life saving device makes this unmanageable manageable condition less crappy.
 There are so many ways to have a little fun with our medical equipment, and I appreciate the online diabetes community.

Day 26- you can't quit this damnable thing

Some days I want to quit. I want to just ignore everything and stop testing, bolusing, and caring.
I cant do that, because if I do, I will suffer and eventually or quickly die.
I prefer living, so even when I am dragging myself along through the day, I care for my health.

In college, I studied, I worked part time, and I read. I did not care for myself. I'd go days without injecting (I was on shots in the beginning of college) fast acting insulin and barely remember to dose the 24 hour stuff.

After many hospitalizations, I went to the pump and still didn't test but at least I was getting insulin on a regular basis.
It took having a husband and children who depend on me to really get through to me. These days, I test my bloodsugar as needed, I mostly remember to bolus for all the food I eat, though some days I forget I have T1D. I will sit down a the table, say Grace, dish up the food, cut the meats for the kids, and begin eating. Usually after a bite or two, it hits me. Dumbass, insulin! So I grab my PDM and bolus. There are better days where I keep my T1D in mind and pre-bolus. Each day is different, each blood glucose reading tells me where I am at, and still I keep going.
I can't quit my self-care. I don't want to die from this damn disease.

Day 25 twelve hours in he drivers seat

I drove over 700 miles today. Even on my best days I struggle to come up with topics to write about this close to the end of the month of November.
Type 1 have taught me to persevere, so despite my utter exhaustion, and the fact that it's now past midnight, I am writing something.

T1D can scare the crap out of you with no warning. tonight, after hour 8 in the car, I felt a sudden "low" and managed to communicate with the husband, who was driving the other vehicle, that we needed to stop. I checked my BG and it was close to 300. It had been high all day because I did NOT want to go low while driving. Maybe it was a buzz from the soda energy drink I consumed, but it wasn't a low! That is a victory for me.

Day - 24

When you have a low blood sugar, you feel like your brain doesn't work. When you're going high, you feel kind of off but lucid.
But when your blood sugars are in range, you feel great.
I am so thankful for the minutes, sometimes hours, when my numbers are in range.
I don't feel like an oddball, freak, weirdo, invalid, person with a chronic illness.
I love when I'm in range. I don't feel like a failure! I feel like I can actually manage this condition. sometimes, I just revel in the moments where my body isn't battling to live, where the fight isn't as tough.
I don't resent my body and hate my autoimmune responses.
This is a short post because those times are short lived, and the feelings are easily encompassed in a few words.
Just enjoy the good times!

Day 23- "What I'm thankful for....

ain't on no list
For it only in my heart exists
For time has helped me understand
The things I can't hold in my hand"

Those words are the title and first few lines to a song released last year on Garth Brooks and Trisha Yearwood's Christmas album. I love that song and feel deeply in my soul how true those lyrics are for me.
In addition to that song and all its deep meaning, there ARE things I am thankful about and for and they are on this list:
 -God, my faith, and His grace
 - My family- trite and I don't care. From those who raised me and loved me as I grew to those who love me now and whom I watch grow.
 - My husband- that man has dealt with so much with me and my ill health, and my personality. He knows me, loves me, and thinks he is the lucky one when I know darned well I had Him guiding us together.
 -Medical technology and very specifically those who made the Dexcom CGM and Omni pods possible.
 - Dr Frederick Banting. Without him and his colleagues in the field, I would have died in my teens.
 - Every opportunity God has seen fit to offer me to practice patience, understanding, and love - when all I want to do is throw a fit and ignore the situations; and especially that He doesn't give up on me, and continues to offer me these chances to shore up my weak points.
 - Hope. I am thankful for a positive outlook and hope still burns in me that I will not screw my children up, that I will not ruin everything with which I've been blessed.

Day 22 - busy just being

Yesterday I meant to post something, anything that would be related to type 1 diabetes, but the day got away from me. We weren't all that busy, but we were simply being together. There was unexpected things for the day which left the four of us alone and we simply enjoyed the company of our children. It's a vacation.
That is the point of this late post. Even though we have a chronic/ invisible/ lifelong medical condition sometimes we just need to take a darned break. We need to let ourselves off the hook if we aren't in range, accept that our lives cant be completely revolving around our medical issues.
Yesterday, I played with my children, laughed with my husband, and sipped coffee without a driving need to be anywhere. It was exactly perfect.

Day 21 - swimming with T1 and the omni pod

The hotel we chose for vacation had a swimming pool and a hot tub. I love hot tubs, they are one of the few things that help me stay warm. Unless I'm up and moving, I stay chilled. We chose to go into the hot tub the other day, and my omni pod was due to be changed later that night. When I got out the water, my pod was beginning to fall off but the canula was still hanging in there. We got to the room and all dried off and ready for bed. I used skin-tac, band aids then by sheer luck it stayed on-for two minutes, then my leg smashed the corner of a desk and bam! Off came the pod. I placed a new one, and all was good.
 Until the next afternoon, barely 12 hours later my new pod alarmed a failure. Placed yet another one and thankfully this one is holding steady!
 For many people, going into water for long term use and are fine, others have to use skin tac or similar products and/or adhesive patches to keep the pods on when needed. I don't typically take long baths or go swimming, so I didn't remember to "pre-treat" the pod before hand, so it essentially sloughed off.
 The new pod is going strong, no alarms, no static discharge and a pod that is thankfully still pumping well-knock on wood!

Day 20 -- fear

Each night I have a fear shared by other people with Type 1.
I am scared I won't wake up.
The idea that my bloodsugar will drop in the night, I won't wake up and feel it, and I'll die. This is not an irrational fear.
I have safeguards in place. I make sure my bg is a little higher at bedtime, I ensure I have slow burn carbs in my system, use Dexcom, and pray.
I've woken up so low and out of it before I was drenched in sweat, my sheets were soaked and I couldn't speak. I had one instance of that happening and I couldn't make body work to move to wake my husband. I found my voice and croaked out for help. thank God he heard me and woke up. He treated my low and I can't be more appreciative of a spouse who takes on the role of caretaker when I am unable to do for myself.
Another time I woke up in the same scenario but he was out of town. I keep low snacks in bed when he's gone, so I was able to ingest sugar.
My other associated fear is dying at night while my husband is out of town, and my girls wake up and I am gone. The reality of this awful chronic condition is that my children have had to learn skills other kids don't. I've had to teach  my children to call 911 if mommy won't wake up (which kids ought to know in my humble opinion) but also that they need to find mommy's meter and test me, and if I am low, force jelly in my mouth. They've helped me before when I was low but have never gone so low that I've passed out and needed rescue assistance.
I don't want diabetes to kill me. High blood sugar is the slow killer while low blood sugar is that super fast killer. I can go from fine to coma in a very short time span.
Onwards to another day of this balancing act.

Day 19- hotel guessing games

 When we travel, we usually use points from my husband's job to pay for rooms in a hotel. This is a huge financial blessing for us, and makes it possible to visit family far away.
 the hotels we choose tend to have complimentary breakfast choices, and sometimes those are amazingly easy for car counting, like fresh or hard boiled eggs, fresh fruit, and single served cereal boxes. Other times they have cinnamon rolls or other pastries, and these can be a bit tricky to calculate carb counts and bolus for.
 I try to stick to meats and proteins, eggs, bacon, and cheese are the ways to my heart, and work best for my managements. I call 'em slow burn carbs.

Going out for a meal or having food delivered is a nice  thing, and the delivery is especially nice as where we live, people don't deliver tat far out of town.
I prefer to use good ole google to find nutrition info, when possible.

We also tend to pack snacks in a cooler and I write the carbs per serving or singe unit on the bags. Big help for me and for distributing snacks to the kids on the road.

I  greatly appreciate when the hotel we choose has a minifridge in the room. I can store my perishables and my insulin without worry.

Day 18 - travel is a headache with T1D

Traveling can be so much fun. We get to see places and people we haven't seen in a long time. When you have T1D, you not only have to pack all the normal things one would when going out of town for a few days. I travel by car normally, so having to keep my luggage under a weight limit is not concerning for me.
 I pack my clothing in one bag, my toiletries and electronics in another, and all the medical supplies get their own bag. In addition,  I carry my purse EVERYWHERE. I have my everyday supplies with me at all times- low snacks, new pod, emergency insulin vial, glucagon, syringes, and extra test strips. When traveling, I take a fortnight's worth of pods, a fresh vial of insulin, and two extra Dexcom sensors. I also pack ibuprofen, bandaids, and other miscellaneous first aid supplies because I am a total klutz.

When arranging baggage in a sedan, clothes and items that won't be harmed in freezing or unbearably hot weather get stashed in the trunk, while electronic and medical "crap" stay in the passenger area. Nothing like needing a pod change and having spoiled insulin.

I prefer to bring along extras, it makes me feel safe knowing my arse is covered if I have complete medical device failure.

Along with knowing the medical paraphernalia I must lug along anywhere away from home comes the trouble with bloodsugars. We drive a dozen hours one way to see family in one part of the country. That means hours of sitting and doing squat, playing the "I have the munchies but can't work off the carbs game" so I must choose to rage bolus and enjoy my ride or be less indulgent. Sometimes when I go the route of indulgent and bolus crazy, I get it right, and I stay in range. Other times I've gone high and still others have gone low. Again with the same routine, different results deal.

Day 17 - caring for yourself when you don't have the desire

This is not just a Type 1 thing, this is a thing applicable to any chronic illness.
This post was written last night, as today I am busy packing for a trip.

I am exhausted. I woke up at 5am, and was on the go until 9pm, with a brief 30 minute break at 10am.
I've managed to eat one meal today. I've ingested about 20 ounces of coffee and 10 ounces of hot tea.
My omni pod needs to be replaced. It's expired, so I have to put a new one on.  This means I must get up, grab the insulin, a new pod, my pdm, and prep it all. I have to undress to access the new site, and wait for 30 minutes after for m y pdm to do this annoying as hell alarm to check bg after a site change. This one feature drives me bonkers, but I digress.
I have done countless loads of laundry, did some prep work for my daughter's school, driven a LOT today, cleaned my kitchen, cared for animals, kids, and myself and I am just SO TIRED. My body feels heavy, I can hardly form coherent thoughts and I have had to use spell check quite a bit in this post.

I am simply done-but I can't be done.
I will get up and replace my pod. I will make sure my bloodsugar is in a safe range so I don't drop low and die tonight, I will swallow my thyroid pill, and I will set my alarm to wake up early again tomorrow because it will be another very loooooong day.
It is all worth it.

Day 16 - vision issues

I am in my early 30s. I was a delinquent diabetic for years. The result of that is I have had damage to my vision. I started out with needing glasses but never wore them as I managed to drive fine and I pre-planned where I needed to go. My sight was limited for distance. I had trouble reading road signs from long distances.
Once the diabetes did it's damage to my eyes, I developed the beginning stages of diabetic retinopathy. That phrase means that the tiny capillaries in the backs of my eyeballs have burst. If this worsens I will go blind.
Another complication I developed was cataracts. I had surgery to remove the affected lenses and had artificial ones placed. Due to scar tissue, I had another surgery a year later to remove that.
 Now, I wear no-line bi-focal glasses that allow me to read and to see long distances more easily.

Driving at night is uncomfortable thanks to starbursts of light from all light sources. It is doable but not what I prefer.

As always I fight my own body so I don't lose even more of myself.

Day 15- exhaustion

There is a thing called diabetes burn-out. It happens and is serious.  We get fed up with doing everything "right" and still getting number that are out of range. We do everything "right" and still get sick, heal slower, get sicker faster, and are considered high risk for certain things. It gets old and tiresome to prick our fingers-that crap can hurt, and it especially sucks if a nurse has to do it because they use "bone-depth" lancets that bleed far much longer and leads to too much blood that oozes for a long time after they get the tin drop needed. We get irritated when our insulin pump infusion sites kink, fail, rip off, and get cut by who knows what, when our omni pods fail for no reason and we waste precious units of insulin, when our vials get dropped and shatter, spilling those life saving droplets all over the floor, when our vials or pens get too hot or cold and no longer work.
It can happen because no matter how hard we fight our bodies, we lose mini battles. Our numbers et to high from every little thing and we must dose massive amounts of insulin to make it get into a safe range. Our numbers go low, and in the middle of the night we lost precious sleep eating or drinking sugar so we don't die, then having to brush our teeth AGAIN so we don't get cavities and put out more money on dental work. The lack of sleep causes our moods to be off sometimes and that can lead to stress which spikes BG, which plays into the vicious cycle of a blood sugar roller coaster.

 We can do everything as prescribed and still have off days and when the off days begin to outnumber the good days, we can feel defeated, worthless, useless, like a drain on our loved ones and guilty for them having to deal with dia-grumpies (my term for bg related asshole moods).

We get burnt out on doing it right and still having results we don't like.

I do not speak for all Type 1 Diabetics, just for myself and others who I imagine might think like myself.

We fight, for our lives, for our health, for understanding and to spread knowledge. We get exhausted and want to give up but we don't.

Day 14- Happy 126th Birthday, Dr Frederick Banting

Today is World Diabetes Day, and is the 126th anniversary of the birth of the man who is responsible for saving my life, decades before I was born.

This article says what I can't eloquently say without plagiarizing anyone:  https://www.nobelprize.org/nobel_prizes/medicine/laureates/1923/banting-bio.html

Thanks to him, and all the others who worked so hard for so many years, I and millions of others who battle Type 1 are not dying from starvation and and ketoacidosis.

My day was spent driving all over, caring for my husband who had emergency dental work done this weekend yet still went to work because he was needed. I was planning on a nice long post with facts about Dr Banting but my brain is mush from being on the go for the last 12 hours straight.

Day 13 - dental fear

Dental work terrifies me, how about you?

As a kid I went to the dentist rarely. It wasn't something we did often but was needed at times. As I got into my teens, my parents' insurance changed and we lost dental coverage. When most kids got braces, we didn't. I became ashamed of my teeth, and still am to this day.
After I married, I decided to start with yearly check-ups and saw a dentist who put a deep fear of them in me. In the last few years, I've found a dentist who offer sedation and helps with people who have a phobia of dentists.  They're amazing. They've always been kind. Recently I had a crown placed on one of my molars and something has gone wrong. I apparently had bad decay in that tooth and the nerve is being stimulated now. My regular dentist sent me to an endodontist since their office does not offer that service.  The new guy doesn't offer sedation, so I was duly petrified over the prospect of having them drilling and filling and all sorts of things I've never experienced before. He was as kind as possible and offered a pill sedative to take before the appointment. Wednesday I go back for either a root canal or a permanent filling. I'm still feeling a whole lot of anxiety but trust this endodontist based on his "bedside" manner.
I am also relying heavily on my faith that whatever happens, God will be with me and I will be able to handle it.
So, how do you feel about dentists?

Day 12 - the ridiculous situations in which I've found myself

Have you ever had to administer medication in the middle of Target? Have you had to chug a juice box while paying for food in a drive-through? How about using dollar tree candy to save your life?
Did you know that you can freak out workers in a retail store when your medical device fails and shrieks loudly and insistently-because it is humiliating and hilarious.

I have had infusion sites ripped out while at the grocery store and for me it was not an option to just wait til I get home to replace it, so I've had to lift my shirt and expose my belly to place new medical equipment on myself in the grocery store. More recently, I had omni pods fail in Target, Dollar Tree, the movies, and thrift stores. I've injected insulin to combat a raging high blood sugar in public, and it's simply irritating. I know there are others out there who hate the stigma and attention garnered by doing something so out of the ordinary for those without knowledge of Type 1. Personally after 17 years with this pain in the ass, I really don't give a rip most days and try to be a good "ambassador" to those without T1D.

Just today, I had been running high all morning, drove around the metro area with my family to an emergency dental appointment and shopping until we were able to head home. We had to stop to grab a bite to eat and in the drive-through I felt that sickly weak knee feeling and knew I was low. My Dexcom had just alerted reaffirming my feeling of being low. I grabbed a juice box and bit open the foil hole because I lost the straw. As I handed over payment I was pounding back the juice. It was embarrassing but a medical necessity.

T1D allows very little in the way of modesty sometimes. It's made it to where I've exposed my belly in a grocery store, placed new pods while in the kids clothing section of Target, and tested my blood sugar in so many places, I can't even remember them all.

If you are reading this and don't have Type 1 Diabetes, please make sure you let others know that we don't want to draw attention to ourselves, that we are simply doing what we need to stay alive, and that making a big deal out of it is not the best course of action if you see someone caring for themselves in public. Some of us welcome questions, especially to educate misconceptions and myths, but others prefer to keep their journey with T1D to themselves and dislike the extra attention.

Day 11- dreams ended

With my diagnosis of T1D, my dream of joining the Marine Corps ended.
I had plans to sign up after high school, become a Marine, and serve my country.
That ended the moment my doc said "You have Type 1 Diabetes" and my plans were shredded.
I lost my goal, I lost my hopes and dreams. I also gained a deeper appreciation for those who COULD serve by defending our nation.
I learned more about other options, and started new dreams, new goals.

I changed my plan from being a member of our military to getting a college degree. I had never had plans to be a mother, but knew I wanted a husband one day.

Over the following years, my goals were reached, and my plans changed even more. I have infertility issue and am beyond thankful for God blessing us with two babies who made it to birth and are thriving little girls now. We were also blessed with a third pregnancy but that one didn't end up with a live baby, we lost that one early on. We planned on the number of children we would have but T1D, hypothyroidism, and ultimately God let us know we would have to adjust our plans to just our two girls.

One thing about Type 1 that I dislike greatly, and need to learn to accept without anger more fully, is its ability to change my plans, both short and long term.