Tag: T1D


the look of love


Do you ever wonder what God’s love looks like? Well, I’m going to show you just one of many shapes His love can take. Observe:

God’s love

Yes.  That stack of medical supplies is just one example of the way God’s love looks to me.

Let me explain.

If you read here at all, you probably picked up on the fact that I often worry about money.  I honestly don’t worry about much else.  Maybe if one of my kids is sick or hurting emotionally, I’ll be concerned and prayerful about that, but things like medical crises and being sick or injured myself doesn’t worry me.  I think that God has shown His hand SO many times in that way that I no longer spend very much time worrying about my health or things like that.  But money (or rather, the lack of it!) has always had the power to bring me to my knees.

Worrying about how we’ll pay the bills or afford to fix something can mess me up big time.  I will fret so much about it that I almost just freeze.  Nothing more so than when it comes to the dire necessities.

God has grown my faith and matured me a lot in the past several years when it comes to trusting Him.  I don’t say that to brag, but to point out His grace in being patient with me and giving me second, tenth, eighty-fourth chances.  It has always bothered me that I worried so much about money.  I’m always trying to figure out how to make more of it, how to generate more income or in times of serious need, I start thinking of things to sell and we just don’t even have a lot of that when it comes to making a quick hundred or so.  Yes, for us, an extra $20 can sometimes be very hard to come up with, just so you understand my frame of reference.

After some wonderful sermons that have been speaking to me about growing my faith, I determined that I would stop fretting about money and paying bills.  I would begin to wait, lean on and trust in God to meet these needs.  And before I knew it, a perfect opportunity presented itself.

I was almost completely out of supplies for my insulin pump.  I had called the supply company already over a week ago trying to sort through a balance they said I still owed.  I explained to them that I have a second insurance policy that should have paid the balance.  They said I had one amount from the first of the year already in collections and another balance.  After being given the run-around and being told various things by various people, I finally had a sales rep tell me they don’t “participate” with my secondary insurance company.

Nice.  After having TWO different people who were supposedly from the company’s insurance department assure me “we will get that filed with your other policy right away”, now a sales rep tells me they don’t even take the other insurance??  ARGH!

I have no patience when it comes to this kind of stuff.  It sets me on edge and makes me a nervous wreck.  There’s just something about being told you have an outstanding balance of almost $1500 that makes me queasy.  When it’s all we can do to get the utilities and mortgage paid and have a little left over for groceries while juggling a stack of hospital, doctor and lab bills from month to month?  It just overwhelms me and sets me on a track for a real fear-fest.  Echos of “how are we going to afford…” and “where will we get that much…” begin to cripple me.

So here I sat, down to ONE line set and three reservoirs having visions of having to go back to multiple daily injections and thinking about how awful my levels would become without a base rate of insulin from the pump…  I just stopped and thought, “Okay, God.  You’re going to have to take care of this.  I can’t see ANY way to come up with this money, so I’m going to just trust You.”  It’s much easier to “trust” God when you have at least an idea of how it might be possible to make something happen.  That’s why He does things like lead several million people to the edge of a sea with a murderous army pursuing them…so He can show Himself and it be known that without a doubt, there was NO WAY they could have escaped without God’s provision.  (Read the story of Moses)

He erases any chance that a thing could have “just happened” or that man could have had anything whatsoever to do with it.

That’s where He had us.  We were already behind on one of our big payments and thinking we would barely scrape by if we paid the big ones this week, then the lesser bills next week.  Now this?

I was thinking about how I could maybe use another reservoir but reuse the same line set when this reservoir was empty.  That’s risky and can cause an infection at worst or irritation at best.  I was trying to think of EVERY POSSIBLE SOLUTION all the while saying, “I’m going to trust God with this.”  Even though, in reality, I wasn’t really trusting Him completely.  I have to say, though, I was doing better than I would have in the past.  At least I hadn’t allowed myself to fall into a deep depression and cease to function.  I hadn’t curled up anywhere to cry.  I was actually doing better than usual, but still… I hadn’t let go of trying to solve the problem myself while I was “trusting God”.

Shame on me.

The very next day after getting the news that we would have to pay $600 of the full balance before they would let me order again, I got a text from a lady who has been doing my physical therapy.  She works on Tommy’s back too, so we have both gotten to know her.  She’s really sweet, but struggles with self-worth and depression too.  We’d been trying to get her to come to church with us, but it hadn’t worked out so that she could.  I ended up sending her this sermon after telling her it would do her a lot of good. I told her to MAKE the time to watch it when she could concentrate and pay attention.  So she had called me when she got to listen to it while driving a couple hours to another town for a job.  She was almost in tears and said I was right, the message was exactly what she needed to hear.

So then, the day after getting the news about having to pay the huge amount before I could order supplies, she texted to see if I was coming in for an appointment that week.  I told her no, I wouldn’t be there til the next week.  I forgot to mention, she is now moving to Georgia (moving this weekend, actually!!) so she said she would be gone by then but she had something to give me and could I stop by the office.  I said I could come by after lunch.

When I got there, she hugged me as usual and I chit-chatted with the receptionist while my friend went to get this mysterious “thing” she had to give me.  When she came back, she handed me a plain old envelope and told me not to open it until I was gone.  We hugged again and said our goodbyes.  She promised to keep me updated on how things were going, I told her once again she was going to do great and everything would be fine and then I left.

When I got to my car, I couldn’t stand the suspense, so I opened the envelope, which was sort of “puffy” and inside I found 10 bills totaling $70 and a note explaining.

I was floored when I saw that it was cash.  I mean, what on earth?  I wondered why in the world is she giving me money since I knew she was a bit worried about having enough to make the move and get settled before starting her new, better-paying job in Georgia.

The note explained that she felt led to “tithe” wherever she was spiritually fed.  I’m still not sure what I think about that, but anyway, she said I had helped her so much and the content of the message I’d sent her had been exactly what she needed and she knew that was only through God.

I sat there, stunned, thinking this is God showing me He’s handling things.  I mean, it’s not every day people just give me such a sum of cash, ya know?  So I KNEW it was God but still, in the back of my mind I was thinking, “This is great, God, but it’s not nearly enough… but I am going to trust You still…”

When I told Tommy about it that night, he was flabbergasted too.  He said it was just God giving us reassurance that He was taking care of it.  He said that someone had offered to buy one of his hobby tools and that might get us another $400 so we were encouraged and went on about our lives hanging onto the peace that God would take care of it.

Yesterday when Tommy came home from work, I knew something was up.  He came in telling me he HAD to tell me something.  It’s always serious when he comes directly to me instead of checking on something he’s been working on in the shop.

He began telling me about going into a place where he had to buy some things for work and also some that were needed for his dad’s old pickup they’re rebuilding.  I thought to myself, “Great.  This is going to take forever and there’s a possibility it doesn’t even concern me at all, he’s just excited about something!”  I will admit, I’m not very patient when it comes to listening to Tommy tell me some long, overly-detailed story about what they’re doing to that truck.  Ha.  I don’t know half of what he’s talking about and I’m not super-interested in how it’s coming along until he can tell me it’s done!  He gets so excited about stuff sometimes he HAS to tell SOMEone ALL about it, and I am usually that someone.  It doesn’t matter to him whether I understand him, whether I care or even if I listen for the most part… he just wants to tell it and ‘get it out’ of his system somehow.  It drives me crazy because I seldom EVER do that to him.  He would croak if I told him every time I got excited about finding a new way to get stains out of his clothes or if I went into great detail about how difficult it was to do my own nails or something that he has absolutely no interest in.  He doesn’t seem to mind that I don’t care how many times they tried the whatsit in the thingamajig to get the whatchamacallit up to 2000 RPM’s or whatever.  sigh

ANYway… this wasn’t that kind of tale, thankfully.  He started telling me about talking to a lady who worked there who also has type 1 diabetes and was having a bad day with high blood sugars and when her sugar finally came down, she was feeling really awful.  He then said they got to talking about supplies and insurance and it came up that we were having trouble getting my supplies.  She looked at him and said, “Oh, well the way my insurance is now, I actually have some extras.  I can give her at least a box of each.”

Tommy said he almost started bawling the same way I was in tears at that very moment.  I was just FLOORED.  So THIS is what God was planning??  And all that time I was trying to figure out where we’d find the money to just pay what absolutely had to be paid soon enough for me to not run out and all along He had it more than well in hand.

We made plans to meet her at a local store at noon today and when we got there, she handed a bag through the car window with not one, but THREE boxes each of line sets and reservoirs!  I was just stunned!  God had provided above and beyond what we even asked for!We thanked her profusely and then started talking.

Tommy knew she hadn’t been in church in awhile, so we invited her to go with us.  She seems to want to but is hesitant.  Most people are, I guess.  Even when they know they need to get back in church and back on track with the Lord, we always seem to draw back as if we don’t know how much better life will be.

We told her we’d call her in the morning, so I’m praying something changes her hesitancy into eagerness or at least willingness to go with us.  She’s a single mom with a young daughter so I’m really hoping she will come.  Perhaps, just maybe this is the reason God lined all these things up?!

I don’t know, but once again, He has provided.  I’m so thankful for His patience and His grace.  Now we have time to gather the money needed to at least let me order supplies again.  What the lady gave me is almost three months’ worth of supplies.  CAN YOU BELIEVE THAT?  We offered to give her some money (remember the $70 my friend gave me?) but she refused to take it.  I was really hating to have to part with that cash if I’m being honest, but I would have given it to her if she’d taken it.  I feel so ashamed that I wasn’t more willing to give it away since it was given to me.  See?  I am still struggling with feeling a sense of want.

All the more reason I am SOOOO thankful God is patient with me.

Has anything like this ever happened to you?  Do you worry about money too?  If so, how do you deal with it?


the worst one yet: a hypo story


So yeah, in this post I mentioned that the reason it was delayed is because I ended up in the hospital that evening.  I promised to tell you about that, so here goes…

I’ve been really REALLY sick since the end of August.  If you’ve visited at all in that time frame, you probably know this already.  I was just miserably sick with some sort of bronchial-slash-allergy illness from Hades!  I was on and off antibiotics and steroids and all sorts of allergy medication, nebulizer meds, inhalers and nasal sprays.  I was using an oil diffuser, vitamins and herbals, teas, Vicks on my feet… you name it and I tried it.  For the longest time, I just could not seem to get better at all, or I’d get better for a couple of days and then go back or get worse.  Finally, FINALLY, I started to feel like I was over the hump and improving a little.  I had started immunotherapy and either that was helping or The Sick just got tired of me at last and went to torment someone else.  I honestly don’t know.  I just knew I was thankful to feel almost human again!

That was a couple of days before Thanksgiving.  I felt good enough to help plan the meal.  I even baked a turkey sans stuffing specially for Corey because poor Mom couldn’t seem to understand that even if she only put stuffing inside the turkey, it could still cause his celiac to flare and had loaded hers full of regular, gluten-laden stuffing.  I also made him some gluten free dumplings, gravy and dessert before going up to Mom’s to make my usual batch of dumplings for the rest of us.  It was a great day, the best Thanksgiving we’ve had in a while.  My cousin Gabe was able to be with us and about six other random friends of ours or our kids were there with us unexpectedly.  I was thankful that my parents didn’t flip out having so many people over, but they seemed to enjoy it once the initial shock wore off.   We were there until almost 11 pm playing games and having a really good time.

That was on Friday.  Yes, I know Thanksgiving is on Thursday but for whatever reason, Mom had decided we would do our Thanksgiving dinner on Friday, and so we did.  So I got through the weekend fine and continued to feel better.  So much better I was beginning to tackle the house, which has been in a horrific state of neglect for MONTHS now.

Then on Monday, I once again was feeling really good.  It’s not often I have days like that, and especially after being sick for so long, so I was relishing the fact that I didn’t need a nap before noon and that I was actually able to finish several tasks without getting wiped out or discouraged.  It was starting to seem possible to get the house in shape enough to get ready for Christmas!

I had gone to get my allergy shots around 9:30 so being dressed and out and actually getting an errand completed by that time of day was a major accomplishment!  I switched out some laundry, folded and put a load of it away, unloaded and loaded the dishwasher, washed the big dishes and put them away and scrubbed the sinks.  I felt like I had conquered the world!  The only downer at that point was that my sugar had been hovering around 200 for much of the day.  I ate leftover dumplings with Tommy for lunch around 11:30 and had struggled to get the number down ever since.  By 2:00 it was still up and of course, my CGM was “screaming” at me every five minutes.  It just kept alerting me that my sugar was high.

Really?!?!  Yeah, I know already!  I really love my CGM and it’s a great tool to have, but I wish there was a way to make it not continue to make that noise after you already know it’s doing whatever Dex is alerting you about while you’re trying to correct the problem!  Gah!  I had started a post earlier and now it was finally finished.  I just needed some photos to compliment the theme, so I was busy searching, uploading, transferring and editing so I could publish when I suddenly got extremely tired.

It wasn’t a “low” tired, but then again they never seem like “low” tireds.  sigh  I just figured that all my energy had been spent and it was time for me to recharge.  By this time it was about 3:30 – 3:45.  While I’ve been sick, I got in the habit of just laying down whenever I felt tired and napping instead of fighting it.  I figured if I slept for 45 minutes to an hour, I’d feel lots better and could get some more done around the house.

That’s the last thing I remember before the ambulance.

I can remember hearing unfamiliar voices.  I can remember the sort-of fading-in of voices asking me questions … it was like tuning in a radio station.  I couldn’t understand the words for a time until I got them “tuned in”.  Then I would hear someone talking about me.  Saying what my blood pressure was, talking about turning “her” or that “she’s starting to come around”.  I think that last sentence is what caused me to realize what was going on and open my eyes.

Somehow, I knew I was lying on the floor of my bedroom with my head at the foot of the bed next to the closet doors.  I remember wondering how so many people were able to fit in such a small space then I began to wonder what in the world had happened.

About that time, I heard Corey’s voice and spoke his name.  I’ve gotten in the habit, ever since I started having those sudden severe lows, of stating what I can see or hear in an effort to let people know that my brain is operating, at least a little.  Then I saw Taylor’s face and spoke her name.  Both of them said things like “it’s going to be okay”, “you’re okay” and “it’s alright now”.  I started trying to ask what happened but must not have been doing a good job when a man to my right leaned over and told me his name was Daniel.  That’s when I knew I was in real trouble, or at least I had been.  I could see his EMT uniform and the creepy blue gloves on his hands.  Beyond that, I couldn’t tell anything else was going on with my body other than I was freezing.  I began saying, “Cold.  Cold.  COLD.”  That’s when they counted and I could feel them lift me with a blanket and plop me onto a gurney.

I could see I was being wheeled through my kitchen and out the door onto the porch.  It hit me then.  The realization that I’d been the cause of yet another medical bill.  I began saying, “I’m sorry.”  And I was, both for racking up another bill to pay and for worrying my kids like this.  Corey told me there was no reason to be sorry.  I continued telling them I was cold because folks, a post-hypo freeze is nothing to be toyed with.  One nurse later told me a severe hypoglycemic episode can put you near hypothermia!  I believe it!

They loaded me into the ambulance and both Daniel and Corey climbed in on either side of me.  I began asking Corey what had happened.  He started off by saying I had probably busted my nose, but it was okay.  That was puzzling because my nose didn’t hurt.  I touched it and it felt fine.  I didn’t know what he was talking about.  Then I felt the stiff remains of dried blood on my face, then the stickiness of something else… Corey gently wiped at my face with a tissue.  “It’s okay.  You’ve got some blood on your face.  We’ll get it off in a minute.”  I said, “Sticky.”  He said, chuckling, “Yeah, I got a little syrup on your face.  We’ll wash it off soon.”  Then I asked him again what happened.  He said, “You got really, really low, Mom.  But you’re okay now.”

I listened as he and Daniel talked about me and then about the job.  Daniel remembered hearing about the EMT Cadet program that Corey had been part of before it shut down.  He said, “I could tell you’d had some sort of training by the way you handled things in there.  She’s up to one-nineteen now.  That’s much better.”

When the ambulance stopped, I remember noticing all the red brick and then seeing Casey, Melissa and Taylor standing outside the open doors as Corey and Daniel began to move me out into the cold air.  Then I saw Tommy, who I hadn’t even had time to wonder about.  They got me into a little room in the ER and another guy came in and tested my sugar.  “Sixty-nine,” he said.   Then he asked Daniel what my sugar had been last time and decided to give me a second dose of D50.  I’m not sure why this was done since by then I was able to eat and drink.  After researching about D50, I learned that it’s not good on the veins and Lord knows, I have bad enough veins to begin with!

I finally began to get warm after about 2 hours.  And my sugar began to rise too.  I had found out by now that Tommy had had Corey remove my pump as soon as he found me passed out.  I connected back to it and bolused for the 170+ sugar.  From that moment on, I would have to fight for every single unit of insulin I received during my 22-hour stay.

The hospitalist had me disconnect from my pump.  Don’t get me started on how little most hospital staff know about diabetes.  In this instance, since at that point we weren’t sure what had happened and thought maybe it had been a pump error that caused the severe low, I was okay with removing my pump.  However, I was NOT okay with the hospital’s method of dosing.  Nor with their schedule for testing my blood sugar.  According to them, if it wasn’t done on their glucometer, it wouldn’t be scanned into the system.  Whatever.  I still don’t want to wait til  you think it needs testing.  So when I check and it’s 198 and I tell you I need some insulin, don’t tell me it’s not time, you’ll bring it with my supper or you will be right back with it (then don’t come back for three more hours).  It was INFURIATING trying to manage my sugars in there.  

Also, don’t confuse your medical degree with my decades of first-hand, 24/7/365 experience of dealing with my own disease.  Thank you.

I’d forgotten how horrible diabetes-in-the-hospital can be.  When I complained to the hospitalist about the fact that my sugar was approaching 400 and I had asked several times for insulin, she told me in the ER (because apparently, if you work in the ER, you only know abut ER stuff??) they usually see diabetes patients with sugars well above 600 and have no clue they are running that high.  I informed her that —I— was not one of those patients and when my sugar got above 200, I felt sick and I wanted to keep it under that.  She agreed and said she’d write it in the chart.

I don’t know what “it” was, but the treatment I got regarding my insulin in no way resembled control.  I won’t keep going on about this.  Maybe it’s fodder for another post instead, but the reality of ill-educated medical staff when it comes to diabetes is just epidemic!

Okay, so when Tommy and I started going back through the history on my pump, we saw that I had somehow (“somehow”) given about 20 units more insulin after my meal of dumplings.  Obviously, I had needed more than I estimated, but not THAT much more.  When we looked at the times of the boluses, we could see that I’d given several of them either in my sleep or at such a low level that I didn’t realize what I was doing.  All I can figure is that I went to sleep frustrated over trying to give enough insulin to get my blood sugar down and had heard my CGM go off so many times that day that when it continued alerting, now for lows instead of highs, I would automatically bolus thinking it was still saying I was too high.

That and also what the pump trainer said… after bumping up my basal rates in tiny increments over the last several months, having the lung infection then being on all those meds, and then finally getting well, my body went back to its former insulin needs quicker than I expected or could adjust for them.  So it was another perfect storm as far as situations that combined to cause this horrible low.

I’m just immensely thankful to be alive.  I’m working to train myself out of the habit of just hitting that bolus button before testing and actually not to use it at all, but instead use a temporary basal rate to correct highs and an extended delivery (a square or dual-wave) bolus when I eat so all the insulin isn’t hitting my system at once.  Tommy, bless his heart, has been off all week watching over me and helping me test these adjustments to see exactly what works best.  He gets extremely stressed and fretful if my sugar gets to 60, which is something I’m not used to.  He’s usually the most calm, collected person I know, but after seeing me bleeding, lying in the floor seizing and thinking I was dying right in front of him, he now worries any time my sugar even hints at going low.

I am truly blessed with the best family ever.  If not for my hubby, who had called to check on me when I was around 50, but I don’t recall talking to him.  When he thought I was treating my low myself, he hung up with me, but then got busy with his work and didn’t call again until 30 minutes later when his app alerted him.  When he couldn’t get me on the phone, he called Corey to see if he could go check on me.  As soon as Corey found me, he called his dad and just said, “You need to come home, Dad, it’s bad.”   Tommy called 911 immediately and tore out of the work site heading home.

I’m not sure when Taylor and Casey arrived, but I’m pretty sure Corey called Casey and he called Taylor so she could come straight to the house when she got home from work.

Hopefully, my sharing these kinds of things will help you understand how hard it can be to manage and regulate diabetes.  That it’s not a cut-and-dried medical issue, not one-size-fits-all treatment and not even this-works-every-time because ultimately, Diabetes does it’s own thing sometimes and it doesn’t have to make sense.

It’s a cruel, exhausting disease so when you meet a person with diabetes, be kind.  Be sympathetic.  Be nice.  Shoot, just be that way all the time, but please extend a hand to the PWDs in your life.  As the meme goes, be kind to PWDs, we deal with enough pricks already.

Blessings,

G~


frankly friday: the D-word debate


So a guy I’ve gotten to know online who is a diabetes advocate (and a t1d himself) recently posted this great video about the whole issue of what to call someone “like me”….a “person with diabetes” or a “diabetic”.

Apparently, there remains a huge debate over this and some folks are really touchy about which one you choose to use.

Here’s the video I submitted as requested by my buddy in response to his video :  (btw–I’m planning to join the discussion if possible!)

 

I sorta-kinda used to be offended about being referred to as a “diabetic” back when I was first made aware of the idea.  I fell for the whole “don’t limit me with a label” and “you’re saying I’m nothing more than a disease when you say that!” mindset.  I say fell for because frankly, it didn’t last long.  It’s just not my nature to stay terribly upset by something like that.  I just got caught up by an idea that I’d never had before, I think.  That and it gets really old using that many words to say something that could be relayed with one word…and I find it awkward to always say “person with diabetes“.  Maybe that’s just me.

I really just got tired of being upset about it.  I wondered if, in the end, was it really worth my energy and emotional balance to get riled up about that, ya know?

Obviously, I’ve decided that for me, it’s not worth my time.  I don’t care if people refer to me as “a diabetic” or as “a person with diabetes“.  I try to use the terms interchangeably in my posts because I know there are people out there who really have an issue with it.  Since I don’t care one way or another, I try to be balanced with which term I use as a courtesy to my readers.

Here’s the thing…if someone says, “That’s Geannie.  She’s a mom.”  I’m not going to get all bent out of shape because, obviously, I am more than “just a mom”.  But that’s kinda a given, don’t you think?  Do YOU know anyone who is a mom or dad and absolutely nothing else?

No!  Of course not!  I guess I feel like this debate falls a bit too close to the whole “politically correct” atmosphere that seems to be epidemic everywhere in the US today.  My feelings are not that easily hurt most of the time.

I have come to really dislike hearing the fairly uncommon phrase “bad diabetic”, however.  Not that I go on a rant anytime someone says that.  I realize that it’s not meant as a personal insult or even a general one.  I figure that it’s just how some people speak, it’s how they were raised to talk about someone with a chronic disease.

But that got me to thinking that there’s really NOT another disease out there that is ever put into words like that.  I mean, you don’t say of someone “He’s a bad hemophiliac” or “she’s a bad pianist” ya know?  Nobody does that.  No one says “they are a bad cancer patient” when someone has had cancer for a long time.  I know that’s what at least one of my friends means when she introduces me to people that way (not EVERY time, but often enough to make me wince — ha ha!)  She just means, I think, that I have struggled with diabetes for a long time and it causes me various problems.

Honestly, I’ve never ever stopped someone or called them out for using that phrase.  Maybe one day I will, but probably not.  Anyone who has said that is either a family member or a friend.  People just don’t understand and I can extend them some grace for that.

People really DON’T understand diabetes at all unless they live with it or with someone who has it.  You can’t totally understand it otherwise.  But I sometimes assume people who know me know more about it than they do.

I have some friends who I love dearly, but we’re not super-close as in we don’t get together often or just chat/text on the phone regularly.  One friend, after being around when I had a hypo that kept me from driving home was sitting with me while I treated and she says, “I thought your pump took care of that.”

crickets

Yeah, I was stunned for a second.  I just didn’t realize anyone did, would or could think that a pump was essentially a cure.  It blew me away.  I quickly tried to expand her knowledge as best I could.  But I’m still not sure she really understood.

You see…people just don’t understand.  I always try to inform people as much as I can (when they show interest) about what diabetes is really like, what is means to live with it 24/7/365.  But not everyone can really grasp it all.

Like my one friend who will still refer to me as “a bad diabetic.  Bless her heart.  Even though I’ve posted various statuses about that or even mentioned something like that there really IS no bad/good kind of diabetes, she still doesn’t seem to understand.  And that’s okay.  It’s not on me to make sure she does.  We don’t see each other very often, so it’s not like there’s time or even a need to more fully educate her and make certain she is understanding.

And after all, it’s not like she’s calling me a “bad friend/wife/mother/singer/bungee jumper”… ya know?  There are a lot worse things to be called.  Ha ha!

But if you would like to understand more about how it is to live day in and day out with diabetes, ask me!  Ask me!!  I would much rather someone ask questions than make assumptions any day!


frankly friday: my top 3 type 1 peeves


I know guys, I KNOW!  I have really been awful about keeping up with FF posting, but it seems the past couple of weeks have just been so stinkin’ busy!  I promise I’ll try to do better.  I know the three of you depend on me for this.

BAHAHAHAHA!!

Anyhow, okay, so I’ve got some diabetical stuff that is just irking the snot right outta me lately.

#1 – Dexcom alarms:  Okay, I REALIZE that’s what the thing is for.  To alert us before our blood sugar gets completely out of control, but c’mon!  Am I the only one who gets SO sick of these things?  It’s not so much the “urgent low” or “high blood sugar” alerts as much as like, when you’ve treated your hypo, it continues to BEEP, BEEP, BEEP at you and you’re all like, “I KNOW it’s low!  Didn’t you see me drinking that juice just five minutes ago?”  Of course, I know Dex didn’t see me, but sheesh!  Then, of course, there are the alarms that you are rising too fast.  Or when your sugar’s been too high and you corrected… okay, maybe you even rage-bolused and now it’s hollerin’, “Comin’ in hot!  You’re gonna crash, you’re gonna crash!  Pull up!”  That’s my interpretation of the dropping fast alarms.   It’s like, “DUDE!  I’m at 330!  It’s okay with me if it drops fast right now, mm-kay?  Now, knock it off!”  I know it’s a lot to ask, but there’s gotta be some way to program the receiver so that it knows when you are too high and it’s okay if you’re dropping fast, or that your last readings were too low and you need to be going up quick.  Is that really too much to ask?  😉

Peeve #2- keeping your CGM stuck to your body:  I know, I KNOW!  EVERYBODY has this problem.  I just hate it though.  I mean, you know that Dexcom knows good and well that most of us will keep our sensor in as long as possible.  They HAVE to know it.  (and so help me, if they start doing something else to make it so that we have to go through this stuff even quicker, I’ll scream bloody murder!)  And I know there are companies who are working to remedy the problem of long-term stick-on-ness, but GAH!  I mean, I love my GrifGrips, but after about a week, they start fraying on the edges and looking pretty sad.  I got some of the SkinTac liquid and yeah, it helps, but I need to apply it when I first put the thing on me and not try to use it to re-stick the edges after a week or two.  It doesn’t work nearly as well like that.  That stuff is STICK-EE!  I will be interested to see how much improvement I get from applying first instead of waiting til there are problems.  I also understand people with skin issues who have a hard time finding ANY adhesive material that doesn’t break them out.  Thank God, I haven’t had any trouble with the adhesive that comes on the sensor or the pump port, but I have had some issues, slight issues, but worrisome still with other adhesives.  I’ve used the Grifs about 5 or 6 times now and only had one time that it bothered me so much I had to take it off.  That was when I had it on a pump site on my stomach.  It was fine for two days and then started itching slightly.  I didn’t get concerned about it then, but by the end of day 3, it was itching pretty bad, but still with periods of not itching.  By mid-day 4, I had to take the thing off.  (yes, I keep my pump sites til the pump reads “NO DELIVERY”, so yeah, Day 4 which was going to be time to change out anyway)  I had the perfect outline of my cute little camo heart in red, angry skin.  It stayed like that for about 3 days, too.  Very worrisome, but I haven’t had problems with it on my arms.  Thank God for that!  So yeah, the whole how-do-I-keep-this-thing-stuck-to-me struggle…if someone could fix that, that’d be great.  

And the last thing on my list of peeves (for today) is….

Peeve #3-When your tubing gets hung on stuff.  I know you Omni
Pod people don’t have to worry about that, but let’s not start all that “I don’t have a tube” nonsense right now, okay?  This is about me and what irks ME.  Ha ha ha…  I have been with Medtronic since 2004 when I got my first pump and honestly, they’ve been great when I’ve had problems and I have just not reconciled the risk of knocking the pod off and losing 

all the insulin in it to the freedom of not dealing with the tubing.  Anyhow, so since I’m not ready to try the Pod, I’m still dealing with tubing issues.  They don’t happen all the time, but when they do, ARGH!!

 

Okay, so that’s my diabetes-related Friday post, kiddies.  I know.  Not much to write home about, but doncha dig my memes?  Ha ha!

Tell me what YOUR biggest peeves are!

Hugs,

G~


I swear I’m not really a slacker!


Okay, well, maybe I am SOMEtimes, but not with the blog.  My life has just been crazy lately, y’all!

Besides beginning treatment with my new chiropractor-friend from Emmaus, (an hour + drive each way!) I went camping in The Gorge with some of my kiddos this past weekend.  Observe:

Here's li'l Abdab, my adopted daughter (she's my DIL Melissa's sister. :) ) with Corey & Mel's dog, Timber, sitting in literally the coolest place in the forest! (the air blowing out of that crevass was just like a/c!

Here’s li’l Ab-dab, my adopted daughter (she’s my DIL Melissa’s sister. 🙂 ) with Corey & Mel’s dog, Timber, sitting in literally the coolest place in the forest! (the air blowing out of that crevasse was just like a/c!

My eldest kids are all into rock climbing.  I have no clue where they would get such a crazy affection, but they have it bad.  They’ve gone from rock gyms to climbing outdoors in the real world (where there are no mats on the floor, guys!) and even worse, my baby boy does “lead” climbing which is when they go up a route where there is no rope, only anchors, and they attach the rope as they climb so that the other climbers can then “top rope”, which a tons safer because they are secured with the rope that anchors to the top and is controlled by a belayer.  Just trust me, I was not really thrilled to hear that Corey was doing lead climbing now!

Here's my big baby boy. As you can see, he's not wearing the helmet his mama bought him for his birthday. *huff* I'm up on another section of rock snapping this pic, so you can't tell how far up he actually is.

A mother’s pride in her child’s accomplishments is often mingled with a terrifying fear for their safety.  The strength of her faith in God’s hand on them often determines which emotion wins.  ~Geannie

We really love going to Red River Gorge, despite the hour + drive.  Honestly, we know we’re blessed to have such an awesome natural wonder so near our home!  It’s a rock climber’s dream and people from all over the country (& even other countries!) come here for the climbing.

Some of us, however, are just there to lazy around…

Max and Tommy, just hanging out, watching all the action high above...

Max and Tommy, just hanging out, watching all the action high above…

Make note of the area underneath the hammock, if you will, for reference in a later story…Yes, it’s every bit as hard and sloped and dangerous as it looks.

Tommy may not have been the only one who “lazied”… after the all-natural a/c, this was my favorite part:

Always with the doggies... :)

Always with the doggies… 🙂

My little Max was always up for an adventure, but he also was no fool about taking advantage of the natural air conditioning available!  Neither was I, obviously!

My li'l cutie, always nearby, keeping track of Mama.

My li’l cutie, always nearby, keeping track of Mama.

I thought I was going to get by without having to worry about the Hubs getting himself killed, but nope.  He had to give it a try too…

Poor guy, knowing he has added many pounds to his frame since the last time he tried this, he gives it a go anyhow...

Poor guy, knowing he has added many pounds to his frame since the last time he tried this, he gives it a go anyhow…

Thankfully, he made it back down using the rope and not natural gravity after realizing it just wasn’t gonna happen.  He got farther than I thought he might.  Ha..farther than I would have!  Abby made it to the top of this route, classified as a 5.9 (don’t ask me, but they said this was impressive)!  She was worn out afterward, which is to be expected, but I was really proud of the little stinker!  She’s lots braver than me!

The poor dogs got worn out considerably sooner.  You’d have thought they were the ones climbing rock walls…but I guess it’s not really much fun tromping around the woods in a fur coat, huh?

Poor Max...

Poor Max… “I’m over this, you guys.”

The Gorge has some very awesome eating establishments, too.  Even though we had packed food to prepare at camp, we ended up at SkyBridge more than once.  It’s the closest to the campground we were at and not only has awesome food, but a great atmosphere.  You just don’t know what to expect from those guys at SkyBridge…

Here's Abby, after asking if she could please have some extra sour cream...the guy came out, plopped this on the table and ran off. We had to take the spoon away from her or she'd have eaten the entire thing like a bowl of ice cream!

Here’s Abby, after asking if she could please have some extra sour cream…the guy came out, plopped this on the table and ran off. We had to take the spoon away from her or she’d have eaten the entire thing like a bowl of ice cream!

Here’s only a portion of the aftermath of one of our trips to SkyBridge:

Red River Gorge is also the location of the Ale8one bottling facility! It's the only place you can order Ale8 or get it from a soda fountain or reliably find it in vending machines! We love it, obviously! :)

Red River Gorge is also the location of the Ale8one bottling facility! It’s the only place you can order Ale8 in restaurants or get it from a soda fountain or reliably find it in vending machines! We love it, obviously! 🙂

We camped at Koomer Ridge campground and it has become our favorite.  Abby and Austin had to leave Saturday night and then Corey and Melissa left early Sunday morning, so that left Tommy, Max and myself all on our own the rest of the day.

I'm not sure if Max was resting/relieved to be left on his own or depressed about Timber being gone...

I’m not sure if Max was resting/relieved to be left on his own or depressed about Timber being gone…

Dad cooking over the fire & Max, waiting to see if he drops a morsel

Dad cooking over the fire & Max, waiting to see if he drops a morsel

Ready for the service to start! ( http://thecreekchurch.com )

Ready for the service to start! ( http://thecreekchurch.com )

 

 

 

Tommy and I had a super-relaxed morning, just slowly packing up while cooking ourselves a monstrous breakfast and waiting to watch our church service stream live.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This gets as many stares on the campgrounds as a nerdy guy sporting some model on his arm at the bar! ;)

This gets as many stares on the campgrounds as a nerdy guy sporting some model on his arm at the bar! 😉

 

Can’t let you go without a shot of the great cast iron setup we have…some of the cookware is Corey’s, but Tommy made the stand, which also doubles as a free-standing tripod, on his forge.

 

 

 

Most of The Gorge, or “The Red” as the climbers refer to it, is located within Daniel Boone National Forest and the area just abounds in natural beauty and all manner of outdoor adventures.  Natural Bridge State Park is another awesome attraction as well as things like Nada Tunnel and the Gladie Welcome Center.

So, referring back to the rough terrain located underneath the hammock that was hung while we were out with the climbers… we moved it from the location in the photo to another place, steeper and with more jutting rocks underneath.  Tommy insisted I sit in it since there was no glorious air conditioning rock-crack at the next place.  I did and was enjoying watching the kids when he comes over and proceeds to wriggle his big ol’ self up in the thing with me!

I immediately started protesting, telling him he was going to “break the trees”, only it wasn’t the trees I should have worried about.  I was really NOT happy that he’d got in there and would have gotten out if it hadn’t been such a physical challenge, but I was thinking about the easiest way to get up out of the thing when PING… I heard the odd noise and immediately felt the hammock move beneath me and BAM we hit the ground, right on top of those big rocks sticking out of the ground and proceeded to slide down the steep slope.

ARGH!  Yes, really, I could have clobbered Tommy right then.  He still has a red welt on his back and I’m still nursing the bruises.  Then I had to explain that all to my chiropractor the next day.  Sheesh!

You’re welcome.  It seems everyone got a good laugh from that one.  sigh

Other “injuries” sustained include my poor foot…I’m making this a small photo in black and white in the hopes of not grossing anyone out, but my right foot has always had this big callous of a thing that always has a shallow split.  But when I walked up the steep grades with my Chacos (which have a rough inner sole) I ended up with it splitting further, so much so it began to hurt.
Tommy, also in his Chacos all weekend, but only because he forgot his boots, ended up with terribly swollen feet.  Maybe it’s just old age?

Anyhow, I’m really not slacking…I’m just busy adventuring and being battered by nature.  Hahahaha!!

Til next time!

Blessings,

G~


frankly friday: t1d & the lockdown


To be perfectly honest, this is not something I’ve ever thought about.  Both because back in the olden days when I was in school (shut up) we never had lockdowns or any such emergency situations as are almost common today.  We didn’t have protocols for how to take care of chronically ill children.  We basically just did the best we could with what we could get a school to conform with for our individual need.

I know.  Scary, right?

But a few days ago, I ran across an article posted by my young mom friend who’s daughter was recently diagnosed with t1d.  She’d posted it on Facebook with this comment tagged to her husband…“One more thing we have to worry about now.”

That broke my heart thinking about how stressful it has to be having a child with type 1.  The article was about the problems that can occur for a type 1 child when all their diabetes supplies are kept in a nurse’s office if there is a lockdown of the school.

This literally never crossed my mind since I homeschooled my sons.  But to think of it in terms of diabetes care… oh my!  It’s terrifying!

So here’s a link to the article.

How have you dealt with this type of issue?  Have you needed to make adjustments for you or your child because of a lockdown?

(I also found this cool list of things “teachers” should know, but I think EVERYONE needs to know this stuff!  😉 )


paying it forward: when someone you know is touched by type 1 diabetes


So this has happened before.  Not often, really, but it happens.  Someone you know or another part of your family gets hit with the Diabeast and comes to you for advice.

The first time this happened, I was still pretty young and a younger cousin of mine was diagnosed when she was three.  Several years later, after I was in high school, her mom would call me every so often asking about something or other, just trying to understand her daughter a little better.

The next time, I was married and trying to care for a toddler and a baby.  One of my very best friends from high school was on vacation with her parents and her sister and nieces when one of them got terribly sick, was taken to the ER where the diagnosis was made.  All this took place while they were about 12 hours from home.  I think, in this instance, my friend wanted more comfort than advice from me.  I didn’t realize it then.  I felt like an awful failure because I was at a loss for what to tell her.  But I think it was more that she wanted reassurance that it would all be okay, that her little niece wasn’t dying and they would all learn to cope with diabetes and it would become much less mysterious soon.

Last week, it was a friend of mine from our Emmaus community whose 10-year-old daughter, K, was diagnosed.  I actually know this lady’s mother better but have spent time with this young mom, M, several times and knew her well enough to reach out first.

Her husband posted a picture of K on Facebook saying something about this being “the first of many pokes for this little girl.”  Somehow, I just knew it had to be diabetes.  I messaged M privately to tell her I didn’t KNOW what was going on, but I suspected what it was, and that she could contact me anytime if she needed.

I know you're not a D-parent, but before my child's diagnosis, I wasn't either.

She soon messaged back saying the doctors were telling her they “suspected” type 1 since K’s fasting blood sugar was over 250.  I tried to comfort her the best I could, but to prepare her for the inevitable.  I told her unless it was something off the wall that I didn’t know about, that the diagnosis was likely to be type 1 diabetes.

You don’t know how I second-guessed myself about that.  But I didn’t see any use in delaying the fact that was eventually going to hit her.  I figured I should start preparing her.  I’ve sent messages a few time since they released K, sent some photos of my CGM and my pump site with my cool Grifgrips and some neat memes about how awesome type 1s are and how we can do anything except make insulin.  Ha.  I can do anything (except make insulin!)

It really seems like M and K are both doing really great with the diagnosis and learning this new way of life.  I’m so thankful for that!  I began by trying to tell M things that K should know, only…most of it wasn’t really applicable to her yet or she wasn’t able to understand them until she’d had more experience with T1D.  Then I thought I’d try to tell M things to watch out for or learn, etc. but then I thought, “Who am I to try and tell her that stuff.  I am not the mother of a diabetic!”  But… I AM a mom, so I can see things from both sides of this a little better, I think.

Here are things I would say to each of them:

it will get easier, I promise

To Mom:

Don’t be scared.   (okay, I KNOW you’re scared, but please try not to let your child see the panic I know you must be feeling.  they need to know mom & dad can handle this.  if you cry a little, that’s okay, but don’t break down into a puddle of moans and flying snot.  your child NEEDS YOU to be STRONG!  you can have that crying fit in private or in the presence of their dad or your own mom, anyone but your newly diagnosed child.  thank you!)

Don’t freak out at all the information they may throw at you in the next couple days in the hospital.  You have time to learn it and you WILL learn it.  Trust me.

As much as is possible, let your T1D child tend to their own business.  What I mean is, this is THEIR disease, not yours.  As much as you’d probably love to take it away, you can’t so let them learn to manage it as much as and as soon as they are willing or able.  The sooner they learn it is up to them how good they feel, the sooner they can hold the reigns and manage their now-fuller-than-‘normal’ life.  If they seem content to let you handle it all, begin suggesting they do things themselves: count the carbs in this snack, draw up the insulin for injection, use the alcohol pad on the spot you want your shot, etc.  Don’t let them give the reigns to you.  DO NOT DO IT.  You’ll thank me for this later.  Both of you.

Don’t let people tell you about “cures” in front of your child.  Stop them MID-SENTENCE.  Explain to them that this is NOT the same as “the kind” of diabetes they are talking about.  Chances are, they won’t understand.  That’s okay.  It doesn’t matter if they never understand as long as they get it that any cure they’ve heard about will not get rid of your child’s diabetes.  If you have to, tell them “Please don’t talk about any ‘cure’ you’ve heard about in front of my child.  It can be upsetting if they think this will work and it doesn’t.  Thank you for trying to help, but it does more harm than good at this point.”  On your side of things, educate your child as much as possible!  Don’t make their whole life about diabetes, but do talk casually about any fad or ‘remedy’ you may hear of.  The likelihood is high that they may even come home from school with ideas for a cure from classmates or even teachers.

Give your T1D a break.  Don’t be “mad” when a fingerstick comes back high and you know it’s because your child has sneaked something extra to eat or they’ve indulged in a sweet at school or a friend’s house.  I know you’re probably not mad, you’re worried and you may not even say anything, but do not let it show that you’re upset.  As a child diagnosed in the 70’s with T1D, I was scolded and chided by every doctor we saw.  My mom never knew what my day-to-day tests were at all unless I was sick (keep in mind, I started out testing urine, not blood!) but any time it was a certain level of “high”, I could feel the disapproval, whether it was intended or not.  I’d catch a certain look or hear a certain tone and that’s a lot for a child to shoulder feeling as if they are bad or disappointing just because they ate the other half of that cookie earlier.  Instead say, “Oops!  What should we do to get that back down?” and let them help figure it out.  If you can tell their sugar is high, say, “Uh oh.  Did you eat something extra or did you forget to bolus?  It’s okay, you’ll do better next time, but what should we do to take care of this?  What symptoms are you having?”  Let them realize that it’s serious.  I’m not saying blow it off, but don’t make each and every time a big production.  Realize that sometimes, no matter what we do, our sugar will do something crazy.  Sometimes we get tired of trying.  Help us get past this bump and get back on track.  Be aware of when this hits your child.  It can be a sign of depression so the sooner you talk about it, help THEM talk about it, the sooner they’ll feel better.  Be your child’s loudest cheerleader.

To the new T1D child:

It’s okay to be scared.  Learning that your life just changed so much is hard.  It’s scary to hear that you have a disease and will have it for the rest of your life.  It is OKAY to be scared, but don’t forget that you are also brave.  There are literally millions of kids out there who have been doing all this insulin and testing stuff for a long time.  They’re happy, healthy and can do anything other kids do.  This is NOT the end of your life.  It’s just a different version.  You can make it great!

You can do this.  It won’t be easy, at least not all the time.  And there will some times that it’s just ridiculously hard, but you can do it.  It’s my belief that the strongest of us are chosen to have T1D.  I don’t know why there has to be diabetes or why you and I have to have it.  For some reason we may never know, diabetes had to exist.  Only strong people can handle living life with diabetes.  You may not feel like a strong person, but apparently you are because you have T1D.  Don’t ever forget that.

It’s okay to get tired.  You’re going to have days when you just don’t feel like you can give one more shot, do one more fingerstick or count one more carb.  That’s just part of living with The Diabeast.  Sometimes we get tired.  It’s a lot to do day in and day out, all the stuff that we do to keep from getting sick.  No wonder we get tired sometimes.  When you feel like this, tell someone who loves you, “Hey, I am sick of being a diabetic.  I don’t want to do anything diabetic today.  I just don’t want to.  Can you help me?”  Hopefully this someone will be your parent, who can remind you of all the reasons WHY you have to do ‘the diabetic things’ and how many people love you and would be sad to see you get sick.  And you WILL get sick if you just throw your arms up and walk away from diabetes.  It doesn’t stay where you left it.  It comes with you and makes you extremely ill.  You could end up in the hospital or even die if you get so tired you just quit without telling anyone.  So while it’s okay to get tired, it’s not okay to quit.  Getting tired is normal.  Quitting is giving up.  Don’t be a quitter!  Go talk to someone who will encourage you!  Pray, read your Bible or something else that makes you happy but let someone know you’re feeling down.  That’s important.

Reach out to others who know what it’s like.  No matter how much your parents or siblings love you, they probably don’t have type 1 and they will never know what it’s like to live with it.  There are just some things they won’t be able to “get” because they never lived it.  Find someone who DOES get it.  It can be from an online community (there are TONS out there!  some especially for kids!) Let your parent help you find a place you can talk about diabetes and not have to explain every detail to them.  It could be an adult who was diagnosed with T1D when they were little like you.  You don’t have to be best friends with just T1Ds, but you need some in your life to just hear you out and know that they understand.

Don’t let diabetes limit you.  I don’t know what you wanted to become before you got T1D, but don’t let it change now.  You know, that if we try hard, keep ourselves healthy and manage diabetes well, we can become ANYthing we want, right?  You are not disabled.  Even if you eventually “qualified” as disabled because of diabetes, that doesn’t mean you are UNable.  It just means you have to try harder, be a little more cautious and plan a little more to do whatever you want to do.

Here are just a few famous T1Ds who didn’t let diabetes stand in their way:

Nick Jonas-T1DJean SmartBret MichaelsNicole JohnsonGary Hall Jr.

Of course, most everyone knows Nick Jonas has type 1 diabetes these days.  That’s because he’s been very bold about sharing that information.  Way to go, Nick!  Next is Jean Smart.  She is an amazing actress who was one of my favorites on Designing Women and later on 24.  Bret Michaels, who is a multi-talented performer beginning with the band, Poison.  Nicole Johnson, who was crowned Miss America in 1999.  Gary Hall Jr. competed and won gold swimming in the Olympics.

Do these people look or sound like quitters?  Nope.  And neither are you!

These are just a few of the things I’d say to someone newly diagnosed with type 1 and to their parents.

What would you add?  What questions would you have?  Let’s have ’em!

Blessings,

G~


frankly friday: the value of the DOC


For you guys either not yet hooked up with the DOC or with no “need” of it, the DOC stand for Diabetic Online Community.

DOC-wordart

I didn’t know such a thing existed for a long time.

Growing up with diabetes, I never had a support group or a peer group of any sort.  My parents didn’t “do” diabetes conferences or fairs.  They sent me to a diabetes camp the first summer I was diagnosed and I was so flippin’ homesick, I couldn’t have learned anything anyway.  I heard a year or two later that this particular camp had not been well managed that year.  That might explain why the counselors could be easily observed from our cabins after lights-out piled up on a picnic table smoking and drinking.  Yeah, prolly.

So other than meeting a new friend named Erin that I know absolutely nothing else about (so I can’t find her now) and doing a really fun obstacle course one day, all I got from that experience was a severe resistance to ever attending any other such thing.  Ever.

DOC-Logo

I know there are great diabetes camps today, but I think the biggest problem with sending me was that I didn’t know enough about the disease, I was newly diagnosed and I was severely homesick even when staying at a friend’s 20 minutes from my house.  When they drove me 4 hours away to this camp, I was just miserable and cried a lot.  Not really a great learning environment.

Then like I said, my parents weren’t really “diabetes” parents.  By the time I had been diagnosed a year, my little sister had been diagnosed with epilepsy, so they kinda had their plates full.  Mostly my poor mom, who dealt the most with all our medical stuff and doctors and calls from school because no one knew how to care for us.  After I became a mom myself, I looked back in amazement that my little mama survived those years!  I know she had to pick me up from school at least once almost every week.  It must have been maddening for her.  When my sister reached those hormonal pre-teen years, she began to have a lot more problems with seizures and so hopefully, I was more able to tend to diabetes myself by then.

DOC-notalone

[Diabetes Hands Foundation is an amazing resource for diabetes information!  They were the main sponsors or creators of MasterLab that I attended in Orlando a couple weeks ago!]

Anyway, as you can see, my home wasn’t solely focused on my disease and honestly, my parents actually felt the diabetes was much less serious than my sister’s epilepsy.  I overheard my dad once telling someone that since they knew what was wrong with me (a non-functioning pancreas, is what I assume he meant) but they didn’t know what caused my sis to have seizures, dealing with her medical stuff was harder.  The general sense of what he said, as I recall it now, hearing it as a child, was that they didn’t have to worry much about me.  There were treatments and ways to manage diabetes.  And while that’s really true for the most part, it set up a really tense dynamic in our home where I was expected to do more, take care of more, be more responsible, and most of the time even be responsible for what she did as well as for myself.

DOC-lazypancreas

[I was often given the idea (or told outright) that I was lazy so now, I sorta AM pretty lazy about a lot of things.  The more tired I am, the less I care about getting other things done.  Is this a result from childhood or more an actual tendency?  I dunno..]

That’s a whole ‘nother story that doesn’t have anything (sorta) to do with this post, but let’s just say that diabetes was “my thing” so much so that once when I had my first extreme low when I was a sophomore in high school, my mother didn’t know how to use my AccuCheck meter and couldn’t test my sugar.  She had no clue I was low and I wasn’t able to speak…words would form in my head, but never came out my mouth the same way, so I couldn’t communicate and she thought I was “putting on”, so I got bawled out during the whole episode.  I would be chewed out at the endo appointments by them because my A1c wasn’t acceptable, then scolded by my mom on the way home for not keeping better logs.  I DESPISED going to the endo!

DOC-iwishpplknew

[this is a hashtag used to help let the world know what it’s really like to live with diabetes]

We didn’t really change how we ate at home.  The most glaring change I recall from diagnosis was that my usual morning meal of cheerios with about 2 tablespoons of sugar and milk with Nestle Quik was taken away.  I don’t know what it was replaced with…I seriously can’t recall, but I do remember how much I loved that sweet grit that would be left in the bottom of the bowl and how much I enjoyed trying to scoop it all out with my spoon before turning up the bowl to drain it.  I still love it even though we seldom have cereal in the house today, IF WE DO, and IF I GO LOW, that is what I’ll fix myself.  The cow’s milk is replaced with almond milk today since dairy makes me so sick and it probably won’t be Cheerios, but I’ll still load it up with a couple heaping spoons of sugar and smile while I scoop that gritty sweetness out of the milk once the cereal’s gone.  I know, gross, right?  Ha ha!  Too bad.  I can’t help it.  I still love it.

DOC-glu

[Glu is a great DOC you should check out.  Google them!]

Don’t think my mom was really negligent and didn’t feed us properly, the sugary Cheerios was my own doing.  And honestly, I’m pretty sure I snuck the extra sugar into the bowl when Mom wasn’t looking.  She just didn’t really try to change the whole family’s diet, which I guess was fair, but it sure didn’t feel fair when it came time for things like Halloween and Christmas and I got handed some nasty sugar-free crapola while my sister got the good stuff, ya know?  Sometime I’ll hafta tell you about when I was maybe 9 or 10 and my aunt who, after offering my sister a bowl of M&M’s, looked at me and said, “You can’t have any because of your sugar,” and felt that took care of things.  Sheesh!!

DOC-beyondtype1

[BeyondType1 now has their own app, which I have been burning up lately!  It lets you post your “D-identity” (whether you’re a diabetic or mom, sibling, etc of a PWD) and where you live so you can find Ds close to you!]

Any “new” thing or technology that we were offered or told about was pretty much handed to me to figure out, which lead to even more things that neither of them knew how to use or read or utilize to help me.  Diabetes was solely and completely MINE.  Diet-wise, control- or log-wise, whatever…it was mine and I wonder now how in the world I stayed out of the hospital as a kid!

DOC-world-dia-day

[Did you know we have our own day?  Actually, November has been deemed “Diabetes Awareness Month”…not that I’m super-impressed with that.  So far it hasn’t really helped tremendously to get proper information to the masses, but there’s always hope, right?]

The only other time I was in the hospital after my initial diagnosis was when I was a junior in high school.  We switched to a new endocrinologist who felt I really needed to be admitted for a few days.  Looking back, I see this was his way of trying to teach me how to manage things better.  It wasn’t that I was horribly ill or in DKA, it was more an attempt to help me understand the disease and how to manage it.  The doc and the hospital were in Lexington, which is about 100 miles from home, so I was left there and didn’t see my family except for maybe once until they released me about a week later.  However, my new boyfriend did come to see me a couple times.  big smile  Bless his heart, even that stuff didn’t scare him off because he still married me about a year and a half later.

DOC-strong

[I always wish I had something like this to hand to people who say, “Oh, I don’t know how  you do that!  I could never give myself a shot!”  Gag!  If your only other alternative was death, I guarantee you could! rolls eyes]

Okay so back to how much I’ve come to love the DOC!  There are SO many ways to connect these days.  Like I said, it was awhile after I got online back in the day when having home internet was a new thing, before I ever realized there was any such thing as a community of other diabetics!

Once I found these mythical people, I was amazed to read about how people communicated and how they spoke of the things that had always been “weird” in my world, but were common in the world of the DOC.  Other people got those hard, sensitive, bulky areas from years of pork and beef insulins.  Other people had dealt with atrophy from those, too.  I’d never EVER met anyone who had a clue what that stuff was!  I soon learned I wasn’t a bad person for only changing my lancets when they started to hurt my fingers.  I wasn’t a ‘bad diabetic’ just because I had been labeled “brittle” by the endos and other people dealt with being “brittle” as well.  It was pretty amazing to find out I wasn’t alone.  Even though I KNEW I wasn’t, when you don’t have contact, it still seems as though you are and for all practical purposes, you really ARE alone when no one in your sphere understands you as well as another PWD.

DOC-socmedia

[The DOC spans all media and areas of the net these days.  There are tons of apps from offering support to helping keep better records to calculating carb ratios!  Do some research and you’ll soon have plenty to keep you busy!]

So really, these days?  There’s no reason to feel alone in dealing with diabetes.  The DOC has expanded and become invaluable to most all of us PWDs.  I’ve only ever seen one person say connecting with other Ds hasn’t helped them.  I agree that it makes me focus more on diabetes, but that’s never been a bad thing.  The most important aspect of dealing with diabetes or any other chronic disease (or just LIFE, for that matter!) is having a positive attitude and knowing there’s always hope.

DOC-diabetesthefinger

[Don’t get all offended!  I think this is kinda funny.  I’m pretty sure this comes from Anthony’s group called “Duck Fiabetes”.  You might as well, laugh, right? You can Google this one, too.]

If you lose that, you’ve kinda lost the battle anyhow, which is why we need each other!  What’s YOUR experience with the DOC been like?  How did you find it and how long have you been a part of it?  What do you feel it’s done for you and your management of diabetes?  Do you have suggestions to improve the DOC??  What other diabetes blogs do you read?

Let’s talk!  Diabetes support doesn’t have to (nor should it!) only come from other diabetics.  That’s what I try to do here…educate everyone about living with diabetes!  The more we understand, the better off we will ALL be!

Love!!

G~

 


frankly friday: another vial bites the dust


So, my Diapals…how many vials of insulin do you suppose you’ve devoured in your diabetic life?  If you’re only a few years in, that may be several hundred, or if you’re like me and  you’re several decades playing with the Diabeast, it could be close to a hundred thousand by now.

empty insulin vial: another one bites the dust

Honestly?  I haven’t estimated how many, many, MANY vials I’ve gone through over the years.  My mind avoids math and numbers whenever possible, so I’m just not geared that way, I guess.  But now that I’m thinking about it, I wonder…

How far would they reach if you lined them up end-to-end?  How high would they stack?  How far would they all roll?  Ha, ha, ha!!  That one makes me giggle.  I’m picturing setting them all loose and a bunch of white-coats trying to figure how far outside a defined area they will wander, how many will end up in a ditch, how many will be crushed by the tires of a vehicle, how many will be carried away by a curious animal….and probably how much I’d be fined for setting loose so much trash on the world.  Bahaha!  That would probably be the highest number of all, right?

sigh   Don’t get me started on the government and their fines and regulations!

Nope.  This post is about pondering how many test strips and such we’ve used.  I have a sort-of love/hate relationship with that “dia-art” that seems to get posted, especially during Diabetes Week or Diabetes Awareness month or whatever where people use their used-up supplies to create a sculpture or picture of some sort.  I mean, some of them are really neat, but some of them are depressing.

Don’t get me wrong, I KNOW living 24/7/365 with diabetes can be depressing.  I get that, people, trust me!  But we don’t have to wallow in the negative, ya know?  Life’s too short as it is.  Why not focus on the positive?

I have to or I’ll go insane.  Sometimes I get really down and I know (and you should know it too) that it’s okay to let yourself deal with those times.  It’s okay to get thoroughly disgusted with trying to manage your diabetes and just be full-on ANGRY!

diabetes burnout: dancing around the flames

But you can’t live there, okay?  Have your tantrum, stage your protest, rage against the Diabeast and then take a deep breath, put your big boy/girl pants on and get on with life.

There’s my sage dia-advice for the decade.  Bahaha!  Don’t dwell on the negatives.  To me, this is just what my life is…this is what I must deal with and it’s no punishment (I finally learned that one!) and it’s not my fault (I was 7 years old, after all!) and it shouldn’t make me feel “less than” in any arena in life!  I just have to do a few extra things, be a little more cautious, take a little extra care in order to “go about things” the way most other people do.

Which leads me back to thinking about how massive the pile of trash is if I had been piling all my supply junk up all these years.  CAN YOU IMAGINE?!?!

mountain of trash

Oh my goodness…I get embarrassed if I’m out somewhere and need to throw away the pile of stuff that results in just changing my reservoir and tubing for my pump!  It’s like two handsful for me.  I couldn’t care less about changing the thing in front of people.  If they stare, I’m cool with it.  If they have questions, that’s great.  But go to throw that garbage away when they didn’t see me unpack and use all the stuff and I get all sheepish.  I know!   That’s weird, huh?  I guess I wonder if they think I’m some loser who doesn’t “care about the earth” or something.  Maybe it bothers be because I always think of how much sooner we’ll have to empty the trash compactor when I toss that stuff in there??  Bahaha!!

The things that go through my mind sometimes…sheesh!

So let’s dish…do you know how many vials or other stuff you’ve used over the years?  (and if so, I wanna know why you kept up with it! ha, ha, ha… non-mathie types wanna know!)  Does it bother you the amount of trash created by the things we need to live?  Did you ever think about it before?

Talk to me, people!   In the meantime, have an awesome weekend!

Blessings,

G~


frankly friday: those blasted beta cells…


t1d results from body attacking own beta cells

Seriously?  I get tired of looking for news about diabetes for these posts.  I’ve been so busy I haven’t really had to time to put down anything about just dealing with it, so I started googling for news articles.

I ended up with a whole pageful of articles about the lovely but ever-elusive islet cell transplants.  I guess I’m in one of those moods where it all sounds like Charlie Brown’s teacher… whawawa-WHA-whawawa.  WhatEVER!  Gah!  beta cell destruction

I get sick of seeing these headlines “NEW CURE FOR DIABETES FOUND!” only to read about this same ol’ stuff…we’re working on some sort of beta cell transplant, but it’s risky, it’s random (as to whether it’ll work or not) and it’s so flippin’ regulated you’re not likely to get one unless you meet the unreal specifications.  Besides that, it’s RANDOM and frankly, pretty unreliable.  I mean, how many people have had this procedure and enjoyed a few months, maybe a year or more of being “diabetes-free” only to have the cells wear out, die out and have to go back on insulin?

what are islets

I appreciate the research, I really do.  I appreciate the folks who are bold enough to go for this and share the data gathered with the research community.  But for heaven’s sake, stop writing these articles or at the very least, stop giving them misleading, grandiose titles!!!  ARGH!

Diabetes is basically a disease that results from the insulin-producing cells (beta, or more specifically, islet cells) are attacked by a crazed immune response by our whacked out bodies that for some reason see them as bad.  OR in the case of some type 2’s, their bodies can’t properly use the insulin they do produce.diabetes happens when the body attacks its own beta cells

Most type 1’s have the kind where those cells are just destroyed, leaving them with no insulin production at all.  No insulin means we can’t properly use the glucose (carbs) in our food for energy.  That leaves all those glucose molecules just free-floating in our blood stream, where they don’t belong, pumping our levels up to dangerous proportions until we are diagnosed either by a conscientious doctor or in the emergency room where we have ended up with diabetic ketoacidosis…a result of having super-high sugar levels for a period of time.

Diabetic ketoacidosis can be deadly if not treated properly and quickly.  I have had it I’m sure more than once, but I’ve only ever been hospitalized with it once and it was the most horrific experience ever!  It screws up all the levels of just about everything in your body.  It makes you nauseated, dehydrated, exhausted (in case just the diabetes itself didn’t have you exhausted already).  It screws up your potassium and cortisol levels and a bunch of other stuff I can’t even remember.  I ended up in the ICU (the one and only time I’ve ever had to be there) for several days trying to get me through DKA (diabetic ketoacidosis).  Some folks put themselves there because they get so sick of trying to manage diabetes, they decide to take a vacation.  (nice way to do it I guess…although if people are going to bring my food and come at my beck and call, I’d rather not have an IV and feel sick as a dog, thanks)  Sometimes it’s the result of some mistake calculating insulin to carb ratio or some random thing beyond your control.  Like in my case, the cannula (small, plastic part of the tubing that goes into my skin) had kinked but not enough to make it leak outside my skin (so I had no clue anything was wrong).  I kept trying to treat my high sugars until I just got so sick, I was in terrible pain and throwing up neon green stuff so we headed to the ER.  Lovely, right?

staggering cost of diabetes

I dunno how I ended up on DKA, but there ya go.  I looked for info about beta/islet cells and also the cost of living with diabetes (and I think the graphic here for that is not correct– I think supplies and prescriptions should be lumped together and much higher) high cost of living with diabetesand also a graphic for the benefit of your non-D’s because too many times a person gets their diabetes diagnosis after being admitted to the ER when that’s not necessary if you know some of the symptoms and go get yourself checked.   Trust me, getting the diagnosis in the doctor’s office is a lot better than getting it in the ER after you have been sick as a dog or possibly ended up in a coma.  Don’t put off getting yourself tested for diabetes because you’re afraid of the answer you’ll get.  That’s just silly!  Take care of yourself and go get the labwork done NOW!  If all of us PWD’s can do this day in and day out, then you certainly can!

Besides that, you already have some great support and resources, right?   RIGHT!

Blessings,

G~