Oh you could if there was no other choice…

There are days that I go to sleep hoping the nightmare of diabetes was just that a nightmare we’ve been stuck in and when I awake it will all be a distant thought. However that’s not happening. Part of me still “hopes” on the days the Clifford’s blood glucose #s seem perfect that his pancreas jumpstarted itself back to life. Yeah, I know this isn’t true and don’t live in dream land thinking it is, like I said “hopes”. I don’t post daily on here because honestly I get tired of talking about diabetes day in and day out. Is it selfish? I don’t think so. We live diabetes 24/7 and I get worn out, exhausted, thrown under the bus from everything it brings forth that at the end of the day I DON’T want to talk about it. My mind is already thinking about it, I can’t stop that, believe me I try. I just can’t shut it off. I’m always thinking carbs, units of insulin, how much he got, how much that’s going to bring him down, is he going to drop overnight.

 

Oh and then there’s the guilt. Somehow the other night I completely shut OFF my cellphone with the alarm in the middle of my sleep. The alarm didn’t go off, I didn’t wake up until 7am…. Somehow my subconscious was telling me to sleep. But it didn’t erase the guilt in the morning until I tested him and found out he was good, and more importantly ALIVE! I’m only human. I try as hard as I possibly can to get up and check as much as I can but I do need to recharge my batteries. And I detest diabetes for making me feel so guilty about sleeping.

 

In the end all you have is the above.. STRENGTH…. You really don’t know how strong you are until it’s the only choice you have left. I’ve been sleep deprived for so long now that I don’t know any different. I still wake up in the middle of the night even if no ones awake or it isn’t time to test. My body just won’t let me sleep. So if you ever get the remarks of “Oh I couldn’t do that, or I don’t know how you do it”. Just respond, you would be surprised with what you could do when you had no other choice.

Illness and Diabetes

 

I know I have discussed this before many times, but an illness of any kind and diabetes is a huge pain in the rear end. Clifford’s blood glucose numbers have been running higher the last 2 to 3 days 200s, 300s, 400s, no ketones, no site issues. It even was to the point he was corrected once at 12:30 then again at almost 4am, and he still woke up at 206! Not to mention after getting 4.3 units at breakfast (which is a high total for him) he was 421 2hrs after, no ketones, site was good. Corrected him because there was no way I was sending him to school with that #. I should mention the correction took place in the doctor’s office waiting room. Turns out Chad and I were right in that he has a sinus infection and probably is the culprit behind all these crazy highs. So antibiotic it is, which may make him run high too, there is no winning with an illness and D I tell you.

WEGO Day #22: Things we forget

Today’s prompt is the “Things we forget” : write yourself a reminder. It can be in the form of an online post – or a picture of an actual Post-It like the ones from the website.
Funny that this was today’s prompt because here is my computer from when I woke up this morning.

It might be a bit difficult to read but it is a post it that says “Call in OneTouch Strips tomorrow”. Even though I posted about how I keep track of prescriptions here , I had to give myself a reminder because before I went to bed I noticed the date of the last refill of OneTouch strips, it was 3/21/12, that mean’s it’s time to refill again. So I provided myself with a little bit of a reminder that when I sat down at the laptop in the morning I would see it.
So for my HAWMC Day 22 post here is my little reminder. I really haven’t been keeping up with my HAWMC posts like I should have, but from here on out I pledge to keep up with them all.

Every once in awhile…..

It’s nice to hear that your doing a good job! Especially from your child’s CDE (Certified diabetic educator). It feels like a nice pat on the back for a job well done.
The one big benefit to those of you not pumping yet with our pump is that we can upload Clifford’s numbers to Carelink. The beauty of this is now instead of calling or emailing his CDE when I notice trends, I just upload and she already has the username and password to log on and view them. It’s a beautiful thing really and one reason why we chose to go with Medtronic. I also have to say Medtronic’s customer service is absolutely wonderful! When we had site issues with a few sites a few weeks back, I called and let them know. They shipped out a new box the next day to replace the box that we were not having luck with. Today it was time to put in our first “official” reorder of pump supplies. Called and completed in less than 5 minutes. After that a few hours later I received a call from a Medtronic Rep informing me they were shipping it out today and I’ll have them by the 25th! And that she had already went and scheduled his reorder for next month and will give me a call ahead of time to let me know when it ships. <3 this. Much easier on me. I don’t know about you but I have a little “method” in place of when it’s time to reorder supplies and prescriptions. I refer to it as the prescription board.

But back to my topic, every once in awhile it’s nice to hear about a job well done. The CDE was telling me I did a good job at handling the issue we had here . Was a good compliment for me and set the tone of my day!

The Pump Life

Clifford has been officially pumping “insulin” for 2 days shy of a month now. I’m going to throw it out there for those of you that are not pumping yet. I love it!  So much easier all around, and he is saved from 6 injections a day. Now the above picture is NOT something one wants to see at a random check at 11:30pm. He’s had some high’s but really nothing much over 300 minus a bad site when he was 500. So this told me he didn’t get any of that 1.5 units that were bolused at bedtime. I couldn’t imagine what it would have been if I didn’t check until scheduled check at 12:30.

Long story short, it was a party in Clifford’s room at 11:30 pm with a 3 unit correction with syringe, blood, ketones, water, insulin, site change you name it we had it. After we pulled the site I reviewed it and it looked beautiful. This told me maybe it was the insulin (which mind you I just gave 3 units with for a correction via syringe) to be on the safe side I got a new bottle to fill the reservoir with. When I rechecked him in 1 hour it was clear to me it was the insulin, he was 553, he in fact went up but ketones went down to 0.6 (thank god). I remember Clifford asking me at 11:30 (Does this mean I will have to miss school), Told him no because by morning he should be all better, if not he’d be in the hospital. (just the life with ketones and T1D). Long story short after a long night of checks every 1 to 2 hrs he woke up to eat breakfast at 150 with 0.0 ketones. So to me that was a victory as he’s off to school feeling much better.
Don’t let this horror story scare you because we’ve only had two bad site issues since starting, and a couple not wanting to stick, but the majority of the time it’s been fabulous. In telling the journey with the pump you have the bad with the good, and it’s good to tell it all to help everyone be prepared. Now if you don’t mind I’m off to get some more caffeine to keep my eyeballs open.

WEGO Day #17: Learned the Hard Way

What’s a lesson you learned the hard way?
Two lessons learned the hard way for this girl.
#1: Never take life for granted. Don’t assume that everyone you love will be there to greet you the next day, that you’ll have time tomorrow to say “I love you” to your children because you were too busy to do it today. Because everything you have today could be gone in a flash. This lesson learned the hard way courtesy of Diabetes. Clifford’s diagnosis shook me up. But it really wasn’t until he had a seizure from a low that it dawned on me just how serious D was. This was 4 months post diagnosis, and 2 months prior he passed out from a low, glucagon had to be used. Oh yeah you’re trained to use that sucker (what like 20 mins in a class at the hospital during diagnosis week (or hell week as I refer to it). But honestly learn from me. Practice, Practice. We are lucky to get enough glucagon that I have two at school, one in his backpack, 4 in various places in the house and 1 in each of my purses. When they expire, practice. You don’t want to be sitting there hands shaking trying to get it all figured out trust me. Even though you do everything correctly and get the Gluc injection in, it seems like forever in the process.

#2: If you don’t like the direction your life is going, change it! Can’t regret changes to make yourself better, your life better, and your family’s life better. If you’re not happy in your current situation, sitting there and doing nothing about it isn’t really going to help. Things are not going to magically change the next morning. Believe me, been there done that and couldn’t be happier now that changes were made!
#3: Oops I know I said 2 lessons but this one just really popped in my head. DIABETES SUCKS! It sucks horribly. But move past it, and do what you have to do to keep it at bay! Until there is a cure, this is the new normal, the new life. Deal with it, take it head on like everything else and kick it’s hiney!

WEGO: Day #15

HAWMC Day #15: Writing with Style. What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best?

This is really where I battle in the whole blog world. I don't plan out my posts, I don't really write them down first, and words typically do not just come out of my fingertips. My posts are however from the heart, and real. They are usually associated with whatever type of day with D we've experienced. From time to time my posts are personal and about our family. But one thing in common with all my posts is Love! I use the wisdom I've gained with being in the DOC now for over 2 years to help guide me in my journey in helping others and reaching out to them. My hope for my blog is that at least someone is helped weekly, daily would be spectacular. I love and appreciate when others reach out to me in various other outlets to let me know they've read my blog and it's helping them. Honestly that makes my entire day so much better. 

If you get anything from my blog at all  please get this. Don't let Diabetes run your life. It already consumes so much of your time and energy that to give in and let it run you will be the ultimate defeat. Take control and show D that you are in charge an it clearly is the minion in this whole relationship.

WEGO: Day #13 10 things I couldn’t live without

Today’s Prompt is HAWMC Day #13: 10 Things I Couldn’t Live Without. Write a list of the 10 things you need (or love) most.

Let’s be realistic here, you all know where this list is going, or at least you should have a pretty good idea.
The 10 things I couldn’t live without (in no general order)
1. Insulin (technically I already make mine, but I couldn’t live without my son, and my son needs insulin to survive, therefore I can’t live without insulin), well couldn’t live without my own insulin too But that’s a whole different educational lesson for another time.
2. My family: This includes Chad, my children (all 7 of them), Chad’s mom, Mom, Dad, Cousins(who I try to stay in contact with as best I can, so if one of you all are reading this, give me a call). Nancy (better referred to by the kids as G, she’s helped me in the whole process of becoming a better pancreas for Clifford, and is considered part of my family), and our church family, they are wonderful and have done so much to help us.
3. Caffeine: So technically I do not need this to “survive” but if I want to “survive” peacefully I need it. Caffeine is a must when you only sleep 4 hours of broken sleep a night.
4. Music: As I write this I’m listening to music (actually Forever by the Dropkick Murphys) I couldn’t survive without music, I listen to it daily. The kids love music as well all the way down to the twins, and the older kids love to run around the house singing bible songs they learned last year in Vacation bible school. I know they are really excited for VBS this year.
5.The internet: Yup couldn’t live without it. I work online, do most of my advocacy for diabetes online, and keep in contact with friends and family online, so definitely need it to survive.
6.Love: May be corny but I cannot live without love. The unconditional love of your children is wonderful, and the love you feel for them is equally wonderful. And the warm, inviting and forgiving love of your significant other.
7. Juice boxes: This one is self explanatory
8. Children’s laughter: No matter what type of day you’ve had the sound of your children’s laughter can put a smile on your face.
9. Potatoes: Chad will agree with me on this one, we could not live without potatoes. Love potatoes, and could eat them daily, I guess it’s the Irish in me.
10. God: Like I stated this list is in no particular order, so one does not come before the other. But God is a huge part of our lives and without him it wouldn't be too fun.

There you have it, that is my list of 10 things.

WEGO Day #12: Stream of Consciousness

“This morning I looked in the mirror”…..
This morning I looked in the mirror and behind the tired eyes I saw determination and motivation. I am determined to get a lot done today in all aspects of my life, work, home, family, etc. So bring on the day. In all seriousness, I couldn’t pull myself awake at 5am, due to Clifford being low at 3:30 am. I actually woke him up by saying “You’ve got to be kidding me”. But at least he was up to drink his juice box. And even with only 15grams he was still 191 this morning, no happy medium today YET!
In reality when I looked in the mirror (read below)
This morning I looked in the mirror, past that huge pimple that just sprouted on my forehead due to me going for the easy route the last few weeks and eating whatever I could grab quickly for myself, not sticking to the gluten free diet that has helped me tremendously.  With the switch to gluten free many things got better. My stomach for one didn’t feel as if someone was running around doing flips in it, and screaming in pain, my ulcer wasn’t hurting, the migraines I was getting daily went poof, eczema cleared up, I felt tremendously better. But I was busy and gave into the rush of things and grabbed whatever we had. Sad to say a week later I’m feeling like crap, but back on the gluten free diet for myself (kept the family on it the whole time though). And I’ve bagged up foods we can’t use here anymore that contain wheat, soy, etc. So day #2 and I’m feeling a bit better minus that huge new person on my face. Hopefully it has something to do with my return to my diet and the new dosage of my thyroid pill. I’m now on 50 mcgs instead of 25mcgs as my levels were still too high. If you don’t already know I have hypothryoidism, actually Clifford and I both do except Clifford’s was due to Hashimoto’s thyroiditis, and mine more than likely was pregnancy induced during my pregnancy with Abby. However at my last check up thyroid TSH levels were still rocking up there at 12.7 (no wonder I’m still sleepy) so an increase in the dosage it is.  My iron levels for my anemia were much better back where they should be but still have to take my supplements (YUCK), I really cannot stand those things.
So what do I really see when I look in the mirror since I adverted from the original post, I see someone with not enough time in the day to do everything I want to accomplish. I’ve attempted to block schedule my day to make it a bit easier, but we’re still a bit behind today. Twins are about 1 hr later for breakfast as they are like me and kind of stick their noses up at breakfast shortly after they wake up. So I think an edit of the schedule is in order. It was created in hopes of keeping me sane throughout the day with everything that needs done. One thing I’ve noticed is there is no “down” time for me. So I am hoping to figure out where to squeeze that in as well. I also have a project or two for myself of creating a chore chart for the children, their day to me is unstructured and I do not like that. I think before and after school there should be some responsibilities with helping around the house such as making their beds, Clifford can pull and take out the garbage daily as it’s not too heavy, keeping shoes on the rack, picking up when they are not, etc, etc. I’m trying to come up with more to provide more structure to their day. In addition I’ve been growing some plants for our garden from seeds so I tend to them daily. The children and I are going to plant some pumpkins in hopes of having some for fall. We need to map out where the gardens will go as well. So for now I’m very busy, but I really never know what to do with myself when I’m not.
In addition:
This morning when I looked in the mirror I saw my son’s pancreas.. Both Clifford and Chad think I’m odd referring to myself as this, but for right now I’m his pancreas, I have complete say so and control over how much insulin to give him. I have to decide in the middle of the night when he’s high how much to give or should I go with what the pump says…. I have to treat him when he’s low to bring him back up. I function as his external pancreas and will be until he no longer requires my services.
Maybe I really should get a bigger mirror so I can see all this at once….

WEGO: Day #10 Dear 16 year old me

Today’s Prompt is to write a letter to your 16 year old self, I think the picture above is “16 year old me" give or take…

Dear 16 year old me;
Boy you have things pretty easy right now, even though you may not think you do. In just a few short years you will be forced to grow up much more than you probably need to. In just a few short years you will begin to know just how easy you have things right now, and how much you wish you could turn back the hands of time. You will learn fear that really you shouldn’t have to learn. But through it all you will learn strength. And in just 4 short years you will have in your arms a little boy that will change your entire world for the good. Things will be tough learning your way through motherhood and caring for this little boy, and in the years to follow his sisters that come along. But one things for sure, in just 9 years you will be happy once again, and know that even though things might not be easy you are not alone. Diabetes will take ahold of that precious little baby boy when he’s 6 years old. It will almost take his life away from you a few times, but you will get through it and learn to be happy throughout it all. You will learn so much that sometimes it may feel like your head is going to explode with all the vast information you have. But remember knowledge is a good thing. It equips you to better care for this special little boy with an unfortunate illness. But through it all you will thrive.
So 16 year old me, enjoy the time you have now being a “kid”, and perhaps do a few things you are thinking about but don’t want to take the leap and do , you definitely won’t regret them. Enjoy your few carefree years you have left, and prepare for the future.

WEGO Day #5: Inspired by Life

Inspired By LIFE

Image Source

WEGO Health Activist Writing Month Challenge Day #5: 

Write a post inspired by an image, also referred to as an Ekphrasis post

For my post today the image I have chosen is that of "new life". I can't help but think each time I would give Clifford an injection and now fill up his reservoir with insulin, and that "band aide" type smell of insulin would find it's way out that it's the smell of "life". Clifford thinks it's a bit strange that I refer to it as the smell of life, because it definitely doesn't smell good at all. But I can't help but think of it that way. Without this band aide smelling insulin he wouldn't be alive. Insulin is not a cure at all, but it's definitely a life saver, more of life support. Without it those with Type 1 diabetes would die. So to me insulin is life. Insulin took Clifford from an unconscious state of DKA with high blood sugars and ketones running wild through his body, slowly killing him, to a lively healthy 8 year old boy. How can you not look at insulin as life!

While I hope for a cure more than anything, for now I will settle and be happy for the invention of insulin, (Thank you Dr. Banting) and enjoy the "life" that my son is now allowed to experience. 

WEGO HAWMC Day #4 Write about health

I write about my health because... Reflect on why you write about your health


Well technically I don't write about "MY" health. But I do write about my son's health... At first my blog started as just a way to vent about the everyday issues we face with Type 1 diabetes. But as I've grown into the role of a caregiver and mother of a child with diabetes over the last 2 years, so has my blog. It's now become an outlet to give others (D and Non D families) a little bit of a look into what it's like to raise a child with a chronic illness, or what it's like to be a child with a chronic illness. I've shared our experiences in hopes of reaching out and helping someone out there that may be reading. I have a hope that some newly diagnosed families may come across my blog and take a look through everything only to gain a better understanding of things and realize that they are not alone. In the beginning your thrown into this whole new world, and it's confusing, scary, and honestly you don't see it as serious as it really is. In the beginning we really only learned all the "Technical" parts of diabetes management. We were told test the first two weeks at 12 & 3am, to tweak his Lantus (basal).... Then you can only test 2 nights a week.

I have to be honest after those two weeks I was exhausted, little did I realize that would become my new "norm". And I did cut back and test only two nights a week. ( thinking about it now scares the crap outta me). But as we've grown and experienced more of the "realistic" side of diabetes management so has our managing skills. He gets tested at least 3 times a night now. Once before I go to bed ( gives me peace of mind knowing what he is) again at 12 or 12:30 depending on his # when I go to bed and what time. Then once more at 3 or 3:30am. From time to time he'll get tested at 5am. I have to say I am learning to break out of my "norm". Last night was an example... Clifford was 111 at 11pm. 111 could go either way but I decided since I was getting up at 12 to test he'd be okay. Somehow I even woke up 15 mins before my alarm and he was 143.  This morning he woke up at 178... This leads me to question whether we need to change the basal at 3am. But that's a whole different story. I typically do not like a 111 at anytime before 3am. But I learned to go with it because there wasn't any nagging feeling of needing to treat it, I actually felt at peace with that number. Call it intuition, call it a 6th sense, or perhaps that's my "superpower" as discussed in yesterday's blog post. Whatever it is, it actually worked last night.

So the point to this all is, I write about his health for you all, and for myself. I write to help others in the same situation. I write to help those that may be a big ignorant as to what Type 1 diabetes is, and help to educate them properly. And I write for myself, writing helps me to release some tension, it helps me to think and analyze things when speaking about his numbers and basals etc. And you know what, I write for my son. When he gets older I'm hoping he'll stumble upon this and see how much I cared about him and his health, and more importantly that I love him.

WEGO HAWMC Day #3 Superpower Day

Superpower Day: If you had a superpower what would it be? How would you use it?


In reference to Type 1 diabetes my superpower would either be the ability to catch a low or high before they happen ( A human CGM if you will ), pretty much what a Diabetic Alert Dog can already do. Or the ability to regulate Clifford's pancreas as it worked before it decided to lose in the battle against his immune system. I'd imagine I would have a cape quite like this one:

Just imagine how much easier everything would be to detect highs and lows before they happen so we can fix them or to to regulate his pancreas with the blink of an eye (I'm imagining I dream of Genie).... But with every superhero there is always a weakness or Kryptonite. For the Superhero of Type 1 diabetes, our Kryptonite would be Ketones. You battle everyday against your nemesis to keep them away and from making your T1D sick. 

So there you have it the fight against the ketones will involve insulin and water!!!!!

WEGO: Health Activists Writer's Month Challenge Day 2

HAWMC DAY #2 Quotation Inspiration: Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes

My favorite quotation when dealing with most anything is by Robert Lewis Stevenson.

In dealing with Type 1 diabetes on a daily basis this quotation is perfect when you think about it. Almost every day we're faced with less than perfect numbers, so our "harvest" may not be quite what we want at the end of the day. But when you're raising a child with Type 1 diabetes sometimes less than a perfect "harvest" can just tug at your heart strings in concerns of complications, and other factors. But think of it this way, you are trying day in and day out doing everything right, so those "seeds" you are planting are much more important than the numbers on the screen. A few highs here or there are bound to happen, and it isn't your fault. You plant "seeds" daily as well in showing your child/children how to take proper responsibility and manage their diabetes the best they can on a daily basis. 

So don't worry about a less than perfect harvest. Think about the seeds you are planting now to ensure the best harvest of all in the future, (A long healthy life with diabetes).

WEGO Health Activist Writer’s Month Challenge – Day 1

Today is the first day of WEGO’s HAWMC. Every day during the month of April a different prompt will be used by health activists and bloggers across the world to raise awareness for a wide variety of health issues, including diabetes, lupus, Celiac’s disease, fibromyalgia, childhood arthritis, and so much more! I will be (attempting) to participate daily as an activist for Type 1 diabetes.

Today’s prompt asks us to “Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?”

This is a really interesting question when you think about it. I have faith and hope that in 2112 those who open our time capsule will have no idea what these items are used for because diabetes would have been cured a long time ago. So in my vision of this they will be confused and interested in what they've come across. Included in our time capsule will be information about what Type 1 diabetes is, it's causes and how those with T1 must take insulin daily in order to stay alive. We'll have pictures of children and adults affected by diabetes to show examples of how diabetes doesn't discriminate. Included will be a blood glucose meter, lancing device, lancets, insulin syringes, the beloved glucagon kit, bottles of insulin, and testing strips. We will include in there the daily routine of something that is living with type 1 diabetes including from wake up throughout the night of sleep.

My hope is that those who open this time capsule will see how much care and work is put into living a life with type 1, but how those affected don't let it get them down and they keep on fighting back and speaking out.