I've Been There. I've Heard That. I'm Still Diabetic.

"Try eating cinnamon, it will completely stabilize your blood sugars." 

"If you don't ever eat honey again, you won't have to take insulin." 

"Can you test my blood? I think I have diabetes because I am thirsty a lot!." 

"You still have to test your blood sugar? I thought you had a pump?"

"Your blood sugars won't be effected unless you choose to stress about them."

"You're so good at managing your diabetes. I'm not so much. I just don't feel like it so I haven't taken my meds in a while."

"Do you want something to eat to bring down your blood sugar?"

Well, like you I'm sure, these are all comments that have been spoken to me by siblings, acquaintances, doctors, and Type 2 diabetics. Initially I respond frustrated, break down in tears or completely block it out to avoid the aforementioned. 

I have given much thought to the ignorance of T1D to most everyone who does not have it. We have to believe most people comment in attempt to help, comfort or simply be right. Most of the time, let's hope they have no idea their ignorant comments strike us in the most vulnerable way. 24/7 we must focus on being a pancreas, while also being a person with personality, life, character etc. So, when such ignorance and to us, pompous words, are thrown our way, it is not merely food for thought, but a personal attack on us. Is it not impossible to take such words personally? I believe now, and am surprising myself by writing this, it is not impossible. 

If I were not a T1D I can't honestly say I would know, not care, to learn much about it. I would though, feel I should share any "knowledge" (please note the sarcasm in the precious quotation marks) or hints that would benefit the well being of just about anyone I came across who has T1D. That's a hard perspective to take because I have ha diabetes for almost 20 years so the facts are ingrained in me. 

Having takin shots and insulin in front of my siblings for years, I thought they would at least get it, but really I have had to re explain how Diabetes trends more times than I can count. If people don't want to understand they will forget, and that doesn't make them any less of a person, but it still serves to be a offensive to us. 

For me its important to remember that the majority of people are trying to be helpful and do want to understand, so further educating them is key. If we let that frustration of being told the secrets of cinnamon and honey rule us, as a collective group, we let diabetes define us completely. Diabetes most likely (still holding the hope for a cure one day) always be in out definition, but it doesn't have to define us completely. Do you agree? I have to remind myself of this by asking questions such as: 

"I'm fighting death by diabetes by choosing to work out today"

"I'm going to ignore that comment, even though it has been spoken by someone who has lived under the same rough for 17 years, because I know it is not true and I will not let diabetes rule me with frustration."

"This person means well." 

To close, I hope you all leave encouragements and share on your own experiences and frustrations, as your sharing may be the relief and uplifting words to help another out of a very gloomy place, that most of us can say to "I've been there." 

Defining Symptoms (Not Defining Who I Am)

Seventeen years later I am given my original "symptom list" that I wrote for my doctor before I was diagnosed with Type 1. Please bare with my horrific, yet due to my young age, kinda adorable, spelling errors. I imagine my mother told me to write everything I was feeling (which may have led to my compulsion for list making in current day life).  I have included a copy below.

Let me translate. 

-Noes (nose, hey I was close its similar to toes)

-Stomakach ("K" is the universal substitute for "C" .... Right? That was my impression after  my parents named all three girls standard American "C" names, yet used the letter "K" instead)

-Ear r (pretty self explainable)

-Pee 

- Throt (still missing the "a")

-Drink (score! Got one right)

-Headach 

-Wallclagehret ( I've stumped myself. I assume this is somewhere along the lines of "when walking my leg hurts." Honestly, your guess is as good as mine)

-Sleepalat (sleep a lot)

-Hungery batcant eat (hungry but can't eat) (Oh how I wish I had this problem now, maybe then I could wear my skinny jeans!)

The ironic thing about this list is the symptoms or side effects have remained the same, all these years later, minus the spelling errors of course. 

A word of encouragement: this disease can bring drudgery to your plans, ideals, moods, and many other things, but the key is to embrace the fact that it can be good. There are so many blessings that can come to you and others if you choose proper response. Some people have diseases that never lets them have a good day or even a good hour. Diabetics can have many a good day. Some more than others and some periods in life more than others. If you let the bad times dictate who you are you will lose the battle. If you choose to "take captive your thoughts" (2Cor10:5b) that are led by emotional and or physical distress and welcome the Holy Spirits Peace, you will truly live. 

If this helps in any way with understanding things you or your child may feel, or if it just made you laugh due to the exuberant spelling, I've reached my goal. 

God bless!

Perfect Perspective

 

Forgive me for sounding cheezy, but in all honesty, my mother has always been my guardian angel. So much more than in the realm of my health and diabetes, although in that area she sure knows how to shine. If you ask her she says “Krystal does it on her own, I haven’t given her a shot since she was 10.” Well, she is honest in only the later part, as she is part of the reason I stay half sane! (Although many will beg to differ with my sanity, I am sure.)

Just recently she shared a wise perspective to take towards strangers or ignorant people who care, but just don’t understand what, why, where, when and how diabetes works.

(So….that applies to just about everyone, including myself sometimes.)

All joking aside, let me share her wisdom as it may bring you some sanity, as it did me. Her newly found perspective arouse after 29 years of parenting. We were having a “catch up on life” conversation and she was expressing some frustrations she had been having with some of my younger siblings (in their early 20’s) . These are common place frustrations in themselves, but due to the longevity of parenting years, they have become what seems to be redundant. Humble as she is, my mother begins on bringing to light her need for patience and tender heartedness towards the abusive and well, just annoyingly immature decisions of these siblings. “Its not that they had made these mistakes before, it’s that I feel like I have taught or corrected them time and time again” was her claim. Makes sense right? She continued and encouraged me by making a connection with my interactions, as a diabetic, with strangers and ignorant people.

She says “my frustrations are probably similar to when someone talks to you and says some ignorant statement about diabetes. You tend to get frustrated and scream in your head ‘I have told you a million times, that’s not how it works!’ You must remember, they HAVEN’T been told. It only feels like that because you have had diabetes for almost 20 years. Even though you have told it so many times, it hasn’t been that person who has heard it.”

My mom is wise and humble. It is a wise and humble ability to choose to look at anything, a disease or parenting in these cases, from another’s perspective. Patience is important. Perspective is important. I think the world could learn a little from this seemingly simple concept.

Just cause you see it, hear it, learn it, experience it in your own perspective, that doesn’t make it the only considerable or right perspective.

Thanks again mom!

Allowed Reality

It's one of those days. 

One of those days where brutal honesty is all I can do. 

 One of those days where after "rage bolusing" for an inexplicable high of 373 - I sit and wonder "What am I doing!?"

 How did I ever think that I could be a diabetic mom? How did I ever think I could handle the guilt of knowing my high blood sugars make me short tempered and almost unable to handle just about anything? How can I deal with my 4 year old, who is in the stage of asking why a 2.1 million times a day and challenging every bit of authority? 

I've talked with so many people who in the course of the conversation where Diabetes comes up - say they couldn't handle it - and I always respond with "Everyone has their 'thing' their thorn, mine just happens to be diabetes." And I stand by it, others have asthma, joint problems, dysfunctional families, poverty, pressures at work, a job they dislike but are stuck in, allergies... what-have-you - every one has their thorn. 

But today that thorn in my side feels a bit infected, I'm not handling it. I'm frustrated.

Guilty. 

Frustrated. 

Fed Up. 

Discouraged. 

Guilty. 

God Grace is sufficient, I know this. Tomorrow is a new day. Yep, it sure is. God is strong when I am not - I know. But right now, I am human. And I hate this. 

And Honestly, I hate admitting to these feelings. I much rather keep up the 'strong' 'everything is just GREAT ' face. 

Today I can't. It's Reality. 

I think a lot of times we don't allow ourselves to feel reality and harbor those feelings until we get crushed by them, I know I do. A lot of times we can't let those feelings out, it's not appropriate or we NEED to just keep functioning despite of the way we feel. 

Frankly, I don't think there is anything particularly wrong with either harboring feelings, or letting them out often. I just don't in general. I don't like to feel consumed by feelings of inadequacy so I force myself into a "I can DO this" mentality, which usually works for me... today it doesn't. Today I can't. Today reality is that I am frustrated, I feel guilty as a Diabetic Mom, as a wife... as a human being. 

The other side of reality is that today is not lost. I'll now go pick myself up and continue on. Remembering God's Grace IS sufficient, and HE can handle when I cannot. 

-  bethany

World Diabetes Day, 2012

If I were to be completely honest, and I will be, I'd tell you that I'm not much one for putting myself out there. I'm not much of an "activist" at all. 

It's funny to me as a Type 1 Diabetic. There is a huge crowd of Type 1's that advocate for us, they are very vocal and all wonderful hardworking people, and I am so grateful for them. Shortly after being diagnosed close to 12 years ago I clung to every internet website I could find that could in SOME way offer me some support. I poured over medical journals, encyclopedias, and every bit of literature that I could get my hands on to better understand this disease I live with. Yet, never been much of one to raise "awareness." Not for any cause however good or noble, quite frankly. 

A few years ago I participated in a "Walk to Cure Diabetes" event, and came away feeling like it was a VERY pointless event. Great, I walked. Great - people pledged some money toward a "cure"… I walked and …that's it. I got some exercise I guess… I know all the great reasons to participate in these things…. I just feel stupid - there are so many other much WORSE things to live with, to be diagnosed with, to find a cure for, in my mind. Not that this is a walk-in-the-park by any means.

Continuing to be honest - I very honestly don't think an actual CURE will ever be made available to the general public. Same with a LOT of diseases, cancers and what-have-you. As much as I am all for entrepreneurship and capitalism, the medical and pharmaceutical industry would lose so much money from the hundreds of thousands of diabetics that depend on them (I'll get real controversial here: it's also my opinion that no amount of socialized health care is going to change that, countries with socialized medicine have not been the innovators in new technologies, it's just those countries that can get equipment approval before the US can, stupid FDA). 

While Type 2 Diabetics far out numbers the Type 1's, we Type 1's typically need more prescriptions monthly and for life. - we don't get to stop when we 'feel better.' There is no cure, there is no "reversing diabetes" when you are Type 1. All those stupid books and miracle drugs get me all enraged (just ask my husband) because they are so misleading, so unaware, SO only there to make money off the gullible that have a real life-threatening disease. 

So, having said all of that… 

I do find the misunderstanding of Diabetes, Type 1, 2, LADA, Gestational… really frustrating. Especially when people like "Dr.Oz" help perpetuate myths and and all the vastly numerous misunderstandings surrounding diabetes. (You can ask my husband about my absolute disdain for Dr.Oz too). 

I've been asked every question in the book, and am ALWAYS happy to answer - no matter how silly the question seems. A few weeks ago I showed a doctor how an insulin pump works, she had never had to deal with a patient on one - so she was unfamiliar. 

My sweet friends and family always put a smile on my face as they offer me food when my blood sugar is high and I feel like death or insulin when it's low and I just want to eat everything in the kitchen -  then feel like death meets a hangover. They mean well and that's what counts for me. 

I've met a great many wonderful people through the diabetes community online, learned a whole new language of diabetes lingo, and good chunk of my Facebook friends-list are other Diabetics I've never had the chance to meet in person, but they are definitely true friends I really hope to one day meet. 

As today is World Diabetes Day, and this is kind of an 'awareness' post I'll end it with this: 

I am SO thankful for Frederick Banting who discovered/invented Insulin so we can live mostly normal lives WITH all our limbs (I know you were thinking about that relative that lost a foot! ), I am thankful for all the men and women that have worked on Insulin Pumps through the years. I would be so lost without my battery-powered-pancreas! And I am thankful for my ever supportive sweet husband and advocate who will call and yell at health insurance companies when they try to play games with me. :) 

Now - I've done my tiny little part in awareness-ing people. :-P

--- Bethany

"Going Through the Motions"

I (Bethany) often have a hard time putting into words everything that rattles around in my head. So here is my best effort this morning. 

I am a wife and also a mom to an almost-4-year-old, who just came down with Croup and an Ear Infection. Which means a few sleepless nights for me when she can't sleep. As I finally get up for the day I feel like a zombie just "going through the motions" of getting us all up, showered, fed and out the door. 

Diabetes is also a circus act of "going through the motions." We check our blood sugar, maybe we don't, and just guess at an appropriate amount of insulin and deal with the fallout later. Insulin pump is out of insulin, beeping and buzzing, so we change the whole system out, or maybe just part of the system. We learn what foods impact our  blood sugar the least, and then what foods will make us feel a bit like we've got a hangover later - and, at times, we'll decide it's worth it in the moment. 

Lately I find myself going through juuust enough of the motions to keep up a poor status quo. I don't feel miserable, and can get through the day. It's not ideal, but at times seems necessary. 

My question to myself has been would I be more productive if I was at 98 or 100%? Would I be thinking clearer? Able to focus better on the task at hand? Be less irritable and more my happy self that I haven't been feeling lately? 

Probably. 

Sometimes our motions need changing, a new kind of routine, or slightly altered for the better. I often find myself in "Diabetes-Burnout", if I try to completely 180º my world, and I know the same is true for most of us. We'd seriously be kidding ourselves if we didn't realize that diabetes is only a part of our daily lives, we have so much more going on than that from work to family to hobbies and all the other things that will come up. 

So I'm challenging myself to change up my daily routine, checking my blood sugar more, and just being more mindful of what I eat. What are you going to do this week to help yourself out? 

- Bethany

Hand to Hand, Heart to Heart

 It is not this case for every Type 1 but it certainly is for me, especially in the last few years. Muscle weakness from high or fluctuating blood sugars causes me to have very weak strength , especially in my hands. The first time I realized my hands would have such drastic repercussions from ill blood sugar levels was a few years back when I was working with my dad in the shop. I couldn’t turn a wrench that under prime circumstances I would have very little difficulty doing. Then I started to drop my purse randomly, have sleepless nights due to muscle cramping, have to stop or not work out because I literally had no strength, or break dishes because my hands just gave out. At first I was terrified and didn’t know what was happening to my body. Then I put two and two together and realized the direct correlation my blood sugars have on my strength. For many reasons, including my love for sports, piano, drawing, work, and the full use of my hands, I am frustrated and fearful of what condition my hands will be in ten and twenty years from now. Praise the Lord these episodes are temporary and I am able to do all the things I love to do still, though still I would be lying if I told you I don’t think about how different life would be if I couldn’t use my hands.

The frustration and terror that results has created much motivation and growth.
What do I do to rid myself of these fears and make it though the times my hands are weak?

 Well, first and foremost, as a believer I know God has a plan for me and that no matter what state I am in I will seek to bring Him glory. He had nails through His hands for me, I will be grateful for whatever state I am in.

 Secondly, I realize and appreciate more and more every day that my husband has really strong hands, really strong muscles, and an even stronger love for me. When we were dating I had an episode and his response to my frustration was “I will always be there for you, even if that means opening what you cant open and picking up what you cant pick up.” Embracing now to admit this, but my first response to his comment was frustration. Why? Well I have a tendency to fear and avoid weakness. I took his kindness as a threat. Oh how I have been humbled and now often seek his help in the areas of my weakness.
Lastly, I learn to cherish the times, that are still more often than not, that I don’t have weakness and pain in my muscles and hands. I cherish the times I get to work with my hands, exercise with full capacity, sleep through the night without muscle cramping, and do the dishes without breaking a glass. I never realized before how I took advantage of living without such conditions. If I can encourage you in any way, please hear this: be grateful for strength and health. I am only one in millions of people with a problem and you just never know when your health decline.

 I am grateful for my hands and I will use them to the best of my ability until the day I die, because I know there are people who don’t have hands or cannot use them. If you feel discouraged remember that this life is temporary so make the most of what you can do!