5 Things I wish people knew about living with Diabetes…

Let’s get right to it. Diabetes is difficult. Like, really difficult. It can be managed, yes. However, the emotional, physical, and mental state this illness can leave you in is pure craziness. One minute you’re completely in control and then you eat something, or go for a jog, or start stressing about the new promotion at work and then bam! You’re on a full blown diabetes roller coaster you never asked to be on.

This illness is hectic, tedious, and unruly. Even on the days you have massive control it isn’t because you were carefree. It takes patience beyond measure, commitment, and a whole lot of will power. I’m not speaking for everyone but my personal relationship with diabetes is a love hate one. I hate it, and it loves to hate me right back. The scars left behind by depression, anxiety, and just an overall fear of all the what if’s is enough to make a person want to scream. This illness is no joke, even though I try to make light of living with it. I do this because if I don’t laugh, even just a little, I would live in a funk.

So I’ve compiled five things I wish people knew about living with type one diabetes.

  1. I wish people knew that even though I am smiling on the outside, inside I am always freaking out. Are my numbers alright? I feel weird, why? I’m so thirsty…is my glucose high? What if I pass out from a low glucose and it’s just me and my kids? Why was my A1c so high? What am I doing wrong? I am constantly having to stay a few steps ahead of diabetes or it will catch me and make sure I fall hard. The truth is that Diabetes is a monster. It doesn’t care about anything.
  2. I wish people knew that it takes so much to stay in control of this. Maybe I make this look easy but it is far from it. Just thinking about being in charge of a drug that could potentially kill me is kind of a mind explosion. I’m not a doctor and yet I have to administer this drug to myself daily. Of course with out it I could die. So there really isn’t a grey area. I either do what I have to or I’m gone.
  3. I wish people knew that I didn’t do this to myself. None of us woke up one day asking to be diabetics. I wouldn’t wish this on my worst enemy. The fear alone of what could happen, or what is inevitable, is depressing. It can eat away at your sanity if you let it. I could fall asleep and never wake up. I could go into a coma. One day my kidneys could go on a permanent vacation, I know quite a few diabetics on dialysis already. Organs can decide not to work. I mean the list goes on. Not to mention I could lose feeling in my feet. People have had to get fingers, toes, even limbs amputated because of the havoc this disease creates. Why wouldn’t I have prevented myself from getting this illness if I could have? No one asks for this. It happens and we deal but I wish people understood that. Sugar didn’t do this to me. Cake wasn’t my enemy. It just happened.
  4. I wish people knew that even when I complain I’m never giving up. I can’t. It’s a real fight or flight kind of thing. You can either embrace it, run with it, and do your very best. Or you can let it take over your entire being until you’re consumed by it. Love and support from family and friends can go a long way. Every little encouraging thought, note, hug, whatever it may be, means the world to us. I know to me it does. If I didn’t have my support system who knows where I would be. I have met plenty of diabetics not caring about their illness because no one cares about them. What’s the point of fighting when you have no one in your corner.
  5. Lastly, I wish people knew that diabetes doesn’t limit us. I may have to take a few extra steps, precautions, or detours, but I am fully capable of taking this world on with diabetes on my back. We can do anything we put our minds to, with just a little more pizzazz, and a lot of snacks.

What’s something you wish people knew about living with Diabetes?

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With or without you.

India ink on paper 11" x 14" 2009

I hadn’t realized how fast time was flying by. I will have been on my insulin pump and CGM dexcom for about a year and a half now. I have loved and hated every second with these devices. At first the pump was amazing. I thought often about how I had been doing this diabetes thing all wrong. I was doing myself a disservice by not investigating these things sooner. The CGM helped me sleep through the nights with ease, unless I was high/low then it was a bit annoying, but I felt confident in myself and in my diabetes management. Having these tools made me feel almost invincible. I could be discreet and still manage to care for myself properly. My numbers were great and all through out my pregnancy I knew that I was doing everything in my power to keep not only myself happy and healthy but also my little man, too.

Until suddenly these once amazing gadgets started feeling like a burden. Until suddenly I felt annoyed with having these pods and sensors constantly stuck to my body. I was loathing site changes and overall I noticed myself ignoring the beeps and warnings which meant I was also ignoring my diabetes. So I took a step back, which has actually ended up being a step forward..funny how that works, and I am back on MDI (manual daily injections) and guess what it didn’t blow up the space time continuum. I am still standing and still going strong.

In an amazing reality check I realized that I can still manage my diabetes with or with out the fancy stuff. My numbers have been surprisingly exceptional and I’m not sure I’ll ever go back to the pump. Who knows though. I’ve learned that if you aren’t willing to try new ways to take care of this disease it will consume you, this mundane beast will make you lock it in a closet until you just don’t care anymore. I don’t want that to happen because it’ll mean I don’t care about myself. So, for now, I am doing MDI and using my CGM to help me through the days and nights.

If we’re being honest with one another I am happy with this decision. Hopefully I continue to feel this way for awhile.

Someone asked me if I recommended an insulin pump and I said that in the beginning I would have but now I say, really evaluate the decision. Consider every option and understand exactly what you are getting into. I feel like insulin pumps are amazing, wonderful tools, when used correctly. The only device I will continuously stand behind is the CGM, that is truly a life saver, insulin I can get either way I choose, but the piece of mind that comes with wearing the dexcom is undeniable.

Are you an insulin pumper? Do you CGM?

Ever just need a break? or are you someone considering a pump? I hope I haven’t given you the wrong message, if you decide the pump is for you, trust me, you’ll go far. My only advice in writing this is to make sure you figure out if it really suits you and I hope you’ll consider all your options. At the end of the day it is your health that matters the most.

Now, don’t forget to smile. It’s a beautiful day.

Food for thought.

gossip-image

I overheard a conversation the other day about a woman and her type one diabetic cousin. She was complaining about the audacity of her cousin wanting to have children. She exclaimed, with a tone of utter disgust, that her cousin already had two, why did she need more than that? I refrained from jumping in because I felt it wasn’t my place..or was it?

I was overwhelmingly upset about the comments. In a conversation that only took minutes from start to finish the woman explained that with being diabetic her cousin was causing so much damage to not only herself but her children as well. The other person in this seemingly one sided conversation asked if something was wrong with the cousins children.

“No. Not yet anyway!”

Not yet?

With someone who had such an abundant amount of knowledge about this disease did she not know that plenty of diabetic women have healthy pregnancies as well as perfectly healthy children. I can use myself as an example. Did I always take care of myself and my diabetes, no, but once I was put into a situation where it wasn’t just my life at stake I focused on being the best me, the best diabetic, and the best mom I could be. Life is not with out it’s ups and downs but that doesn’t mean that everything is going to go wrong all of the time. I have had two healthy pregnancies and two healthy children call me mommy. Why shouldn’t the woman’s cousin be allowed to have as many children as her heart desires? So long as her body permits and the doctors are by her side I don’t see a problem.

I certainly don’t understand why it’s anyone’s business.

Or why the woman decided she needed to tell everyone within an ear shot about her diabetic cousin.

Why am I now discussing it? Because I am outraged that people find it necessary to trash talk any woman, but in this particular situation a diabetic woman, and whether or not she should bear children. The topic hits close to home only for the fact that I have been asked why I decided to have children if I knew I was sickly, if i knew there was a chance that my kids could “come down with it..(diabetes)” Why would I put myself and others in danger?

At times I have fully explained myself when I felt as though the questions and comments were coming from a loving and concerned place. However, most of the time these questions can feel like attacks. Like I am being attacked for a disease I never asked for, like I am being attacked for wanting to be a mother despite these uncontrollable circumstances. Is it really alright to just walk up to people and ask them these sort of things? I deserve respect and so did that woman’s cousin. My decisions deserve respect whether you agree or disagree and so do the cousins decisions.

Furthermore I believe that everyone should be educated before even thinking about questioning people and the way they live their lives. People with diabetes, so long as it is managed appropriately, can live very wonderfully and successfully. Nothing is impossible, well except for creating our own insulin, but other than that we can accomplish so much. And diabetic women, specifically to this post, can most definitely have children and as many as they want!

I am not trying to speak for everyone and I am certainly not claiming to know everyone’s situation but I will say this…be careful what you say out loud and ask yourself if you were in their shoes would you feel offended at all, would you welcome criticism with open arms? Or would you want to be respected?

Jumping off my soap box now.

Have you experienced anything like this?

July Blog Carnival.

We usually talk about how we deal with different aspects of diabetes, or things that would help us deal with those aspects.  This month let’s change things up a bit.  We’re going to revisit a question from the Open Chat on June 18th and come up with something about diabetes to change.  That’s right, we want to know…

If you could change one thing about diabetes, (besides not having it), what would you change? Why?

That’s a very good question.

The common answer is almost always going to be that I didn’t have it in the first place but since I can’t use that one this time I will have to actually put some thought into it. :)

Here’s what I have narrowed it down to:

  • I’d change the stigma that comes with having diabetes, any kind. If I could touch every single persons ear in this entire world and teach them the differences, the truths, and the myths about having/living with diabetes, it would make life so much easier, I think. I wouldn’t have to over explain myself. I wouldn’t have to justify or defend myself. I could just live and do what I needed to do without feeling judged by society. Like I did this to myself. Like any of us chose the diabetic life.
  • I’d change the financial burden it puts on my pocket book and my household. Yes, I have decent insurance now but that wasn’t always the case. When I was first diagnosed I didn’t have any insurance whatsoever. I paid out of pocket for everything which meant I wasn’t always getting what I needed. When my husband and I started dating he would help out with my medical needs. (What a keeper, right?) Now that we are both working the cost of diabetes has gotten slightly easier but not much better. Let’s be honest, diabetes is expensive. The insulin, the meters and test strips, the devices like insulin pumps and CGM’s. Nothing is cheap or free. So if I could change anything it’d be making it more affordable. A topic I know a lot of people in the diabetes online community take seriously and have been advocating for.
  • Lastly, I’d change the scars that diabetes leaves behind. Both emotionally and physically. I have beaten myself up and down for not having the perfect blood sugars, the perfect regimen, the perfect A1c. I have cried analyzing the data and wondering where I went wrong. Or where I could improve. I wish diabetes wasn’t like that. Such a roller coaster. I know that is way easier said then done but the question doesn’t limit my imagination on what I’d change. Along with that I would change the physical hurt it causes our bodies. I have scars and bruises, markings from my pod sites and injections. Pin pricks on my fingers linger longer than I would like and they are all constant reminders of the battle I fight every day. I wish I could change that aspect of this disease. For me, for all of us.

I know that some of these ideas, thoughts, hopes, seem far fetched and completely out of reach but when faced with such a powerful question I can’t imagine the answers would be so simple.

“This post is my July entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information athttp://diabetescaf.org/2014/07/july-dsma-blog-carnival-4/

Life Updates.

 

It occurred to me that I hadn’t posted in awhile.

I have been so caught up with taking care of my daily diabetes needs through out this pregnancy, plus trying to make this a super fun Summer for the little one, while working, trying to spend time with my husband, and trying to maintain my sanity..well, that doesn’t leave much room for social media and blogging.

Here I am though. Letting you know that I am alive and well.

I am currently 22 weeks and 2 days along and feeling every little tumble and kick this little guy is throwing my way. I have a fetal echo scan on the 24th of this month to make sure that he is continuing to grow on target. So far I am feeling great. A little exhausted after working all weekend but great none the less. The only thing I can complain about during this trimester is the swelling. I have hit that wall and I have hit it hard. I will get home from being on my feet all day and I won’t even recognize my legs. They are puffy, swollen, masses. My feet are screaming to be put up. It’s terrible.

Water is my friend and lots of it.

My numbers have been amazing though. I don’t want to speak too soon but I have yet to hit the dreaded insulin resistance stage. In fact my insulin needs haven’t changed much at all. I went from not needing much to being back on my normal regimen from before I was pregnant. Can’t complain about that, right?

Everything is going as smooth as possible and I am so very thankful.

It’s nice that I have quite the helper by my side. A little endocrinologist in training. My daughter asks a lot of questions but the best part is that she soaks it all in. She knows more about this disease than most adults do. She’ll check my dexcom for me when I am busy running around the house. She’ll bring me granola bars in the morning when my blood sugar is getting low. This all makes me happy and a bit sad to be honest. She is so hypersensitive and always aware of me and my needs. Checking on me often to make sure that my diabetes is okay. I feel bad because I am the mommy. My job is to take care of her not the other way around. She announced that when the baby comes she plans on teaching him all that she knows about diabetes.

Then I’ll have two helpers.

Her sweet words make me tear up. It reminds me that my every day struggles/triumphs with this disease don’t just affect me, they affect her, they’ll affect my son. Even more reason to continue to be on top of diabetes showing it who’s boss. :)

 

Smile, friends. I know you’ll find a reason to.

 

Anxieties.

I am now 20 weeks and 4 days into my pregnancy. It’s amazing. I am now at the halfway point with about 137 more days to go. I am so excited to meet this little guy. Last night he was so super active and I loved it. Because every time he wiggles and bounces around I know he’s okay in there. It’s early still and so the flutters/kicks are really going to be rearing up here soon. Then I will be able to tell he’s okay every day.

That’s one thing I am always so nervous about. What’s going on in there? Is he okay? Why didn’t he move? The ultrasounds are a blessing because then I get to see him in there. Waving and dancing. With diabetes on board it makes pregnancy so stressful, I can’t say that enough. The other day I had a horrible time chasing those blood sugars down. I had changed my insulin pod in the morning but by the afternoon my numbers were creeping up, slow at first, then quicker. The adhesive around the pod had come up and even though I thought it was all salvageable apparently the cannula/needle had already popped out of my skin a bit.

So, in the middle of work, with blood sugars in the 300’s, I had to rip out my site.

And this is what I found…

That little thing was all sorts of mangled up and couldn’t do it’s job properly. I injected and hoped for the best. Later on that night I was able to put a new pod on but the roller coaster had begun. All night I battled highs and lows. I couldn’t find a rhythm. I woke in the morning to a blood sugar reading of 190. My dexcom screen looked horrific. Yellow all across the board, highs, numbers all out of range. I cried. I held my tummy and cried. I know that for the most part my numbers have been amazing. Astonishingly amazing. I have busted my butt every single day for numbers that will do as little harm to his development as possible but when I looked at the screen all I saw was failure. I had failed him and myself.

After a few hours of constant monitoring and boluses I was finally starting to see the light at the end of the tunnel. My numbers were back in range and I was able to breath a sigh of relief. These days are few and far between but when they happen all I can think about is all the negative the doctors put into your head. My team is awesome, they are encouraging, and on top of everything but I can read between the lines. I know what needs to be done and what could happen if it isn’t done right. So far this little guy is growing healthy and strong with no complications and I plan to do everything within my power to keep it that way. I plan to go above and beyond to ensure that he comes out perfect.

I am counting down the days till I get to hold him, and kiss him, and shower him with love.

But mostly, right now, I am counting down the days until my broken pancreas will no longer be affecting him.

Here’s a picture of us during the fourth of July festivities this week. He didn’t care for fireworks too much. :)

 

Tuesday Thoughts.

I am currently 18 weeks and 3 days along in this pregnancy. It is just flying right on by. There’s this website I subscribe to and they email me fun tidbits about baby and my changing body. They tell me that this little guy is about the size of a large bell pepper. Weird to have my baby compared to food, but okay. :)

On the second I have an ultrasound appointment with the diabetes specialist. There they will measure baby to make sure he is growing properly, because apparently us diabetic mommies have big babies, they will also make sure that my due date is still accurate. The most important part, to me at least, is that I will get to see his cute little face on the monitor. I’ll get to see/hear his heart beat and watch him kick around. It’s my absolute favorite thing ever.

I will say that the most annoying thing so far is the indigestion that is sneaking up out of no where. Sleeping has also become incredibly uncomfortable which is why naps are a must during the day. A few other pregnant mommies have suggested special pillows geared towards expecting moms. I may be investing in something like this very soon.

The cravings are still a thing. The nice thing is that my husband will go to the ends of the earth to get me whatever I want. Special shout out to him for that. :) Maternity clothes are a must now. I am getting very round in the belly and nothing seems to fit like it used to. It’s terrible. Thankfully Target/Kohls have very stylish and affordable clothes. Whew.

Something I recently discovered..

These little signs are placed randomly, at random stores, just for me. :) Well, for expectant mommies. I know walking is good for me but when it is scorching hot out I will gladly park here. Located in front of most entrances. It’s the best thing I’ve ever seen. Don’t judge. Even the hospital I go to for my diabetes specialist has a few of these out front.

I’m enjoying the perks of being pregnant. :)

Other than that. There’s not much going on. I have been emailing my numbers to the specialist who hasn’t changed anything with my basal settings. She doesn’t seem too concerned with the lows either. She just suggests I eat more snacks in between meals. Never thought that’d be an option. I was waiting for insulin resistance to kick in, which I am sure it will eventually, but so far nothing. The other day I actually ate a whole meal with out needing to bolus.

In fact I ended up dropping and had to snack some more. You’d think this would be “living the life” but it can be a bit frustrating. I suppose if that’s all there is to complain about though I shouldn’t complain at all.

My body has slowly gotten used to functioning at these lower numbers. My main concern is that hypo unawareness. I rarely get symptoms anymore unless I am in the 40’s. Before it used to be around the 60’s. I rely on Dexcom more than ever to alert me of the lows so that I can treat them early. It’s such a balancing act.

I’m just keeping my eye on the prize though.

Only 22 more weeks to go!