I have been going back and forth with how to start this post when in truth the only thing screaming in my head is “DIABETES SUCKS”! I have really fretted about saying this because I don’t want to come off like a “Negative Nancy” or any other thing I will be criticized about.
I am a believer in saying what I mean and meaning what I say. I am a believer in telling the TRUTH even when it hurts. I am a believer in asking for what I need when I need it. Ultimately, I don’t…no, I can’t lie to myself, which means I can’t lie to you.
So, accept it as my truth based on my experience that DIABETES SUCKS!
Diabetes is HARD! It is unfair, inconvenient and it sucked the spontaneity (and fun) of eating out of our lives. I am not a diabetic. I am the mother of a Type 1 Diabetic who was diagnosed 4 years ago.
I already knew what it meant to eat healthy, how to count carbs and read food labels as a result of my efforts to lose weight and have a healthy body. So that part wasn’t such a big deal. But I had no clue about glucose monitors, testing strips, lancets aka pokers, insulin bottles vs. pens vs. pumps, syringes vs. needles and rotating injection cites on the body.
Absolutely no clue about overnight lows and morning highs. Most importantly I didn’t believe the doctors when they said it wasn’t my fault and that there was nothing we did to cause his diabetes. My husband and I wept uncontrollably the day our son was diagnosed. I wept off and on for months thereafter.
For a time, I couldn’t even look at pictures we had taken of him prior to diagnosis. All I could think while staring at them was how his pancreas was slowly dying at that time and we didn’t know it. I also looked at pictures and wondered “was this the moment it began?” I felt betrayed. I mean, he wasn’t even over weight (myth, right, that’s how much I knew).
It was not fair that the pancreas of such a small person (my baby boy) would give out and just stop working. How does one go from having all well child appointments since birth through age 6, to ending up at an urgent care facility, only to be rushed to the emergency room to be told he has DIABETES? All I could think was “How DID THIS HAPPEN TO US?” I felt like we had been cursed. I recall thinking,
“I monitor his diet. It’s not perfect but it’s not terrible. He doesn’t eat a lot of sweets and doesn’t drink a lot of juices. So HOW DID THIS HAPPEN?”
To date, I am still not really clear on how this happened to our family. I have my suspicions but that’s a conversation for another time. However, I forced myself to believe that it wasn’t my fault after the seventh doctor praised us for being such great parents. I was baffled! GREAT PARENTS? I FEEL LIKE A FAILURE! LIKE I LET HIM DOWN! GREAT PARENTS? All of the doctors said, “YES, great parents!” Everyone was so amazed how “early” we caught it.
“EARLY!” I said, “We have been dealing with him being extremely tired since school started, watching his appetite steadily increase. We thought we were great parents when he started wanting to drink more water instead of the usual fight about it.”
We had been watching him for a few weeks, but none of the signs added up enough to match the symptoms on the lists we researched on the internet. We asked his teacher if she noticed the things we were seeing at home and she said no.
So we thought, “if this was diabetes, “SURELY” the symptoms would be consistent. We were watching him! Wondering if his increased appetite was due to a growth spurt. Doctors told us that in most of the cases they dealt with the children ended up passing out on the playground and wound up spending a week in ICU in a diabetic coma.
But not our son, although his blood sugar was 500 he was still alert. He was feeling terrible but he was alert. Oddly enough his “well child” appointment was scheduled two days after our world changed forever. Go Figure!!!
There is so much planning, a lot of strategic thinking and I NEVER stop counting!! It would be easy to just give up. It would be more convenient to go to a restaurant or buffet and let him eat and not worry about it.
It would be nice and less stressful to eat my food while it’s hot instead of searching for nutrition facts, counting carbs and preparing needles while everyone else is eating. It would be fun to go out for ice cream after dinner.
HECK, it would be nice to eat dinner after 7 and not have to stay up all night checking his blood and giving corrections because he went high. It would be a blissful to sleep all night without waking up in the middle of the night wondering what his blood sugar was while shielding my eyes from the glare of my iPad as I searched for his numbers from his continuous glucose monitor in the dark.
It would be a blessing to wake up each morning and not have to pray that he is still alive (tears, I’ve never shared that with anyone). Scores of diabetic children die in their sleep overnight and that terrifies me.
Our life…my life would be so much better if it weren’t for diabetes. But, that just isn’t the case. That isn’t our reality.
Some people may be wondering why I shared this story. I shared it because I wanted to help you understand why I am so passionate about the lives of diabetics. Living with diabetes on a daily basis is tough for our family and I know it’s tougher for others, which is why I became an advocate for individuals managing diabetes.
Those early days were like being on an emotional roller coaster. There was a lot of self-blame, fear, shame, anger, disappointment, miseducation and sadness. However, thanks be to God, things are better now, much better actually. Although not perfect and definitely not the same as before.
I don’t think diabetes management will ever be perfect but I can improve how we manage it. Over the last 3 years we had done extremely well and other times it has been lack luster at best. I have felt like I understood this “beast” they call diabetes and I was prepared to slay it.
Other times I felt completely defeated and I was not sure how we would ever get this right. Honestly, I feel BULLIED by diabetes on most days. But I am one tough cookie. I don’t QUIT! I don’t GIVE UP! I AM A FIGHTER, so I show up to for our match each and every day.
The reason I won’t give up and throw in the towel is because I love my son immensely. I want him to live a long, happy and healthy life and in order for him to do that he must have good glucose control. He must understand his condition. He must learn how to count carbs, read labels, meal plan, check his glucose levels and administer insulin.
If he doesn’t do these things he runs the risk of increasing his chances of acquiring one of the many senseless complications of poor glucose control.
Our son could go blind, lose toes, feet and legs. He could ruin the function of his internal organs, putting himself at even greater risk of having a heart attack or stroke or acquiring other autoimmune diseases.
As a result, I closed my eyes and searched my soul and asked myself, “What is the cost of poor management?” What is the cost of giving up? What is the cost of denial? How high a price am I willing to pay for our choice to not manage and not teach him to manage his condition? Is it worth his toes? A leg? His eye sight? IT IS NOT! So, as inconvenient, unfun and as EXPENSIVE as this condition is, we have to FIGHT!
Take a deep breath in and exhale because we’ve got to get ready. We have to do the very best we can to keep him healthy and alive. Not only am I fighting for him. I am fighting for you! YES, YOU!
You know who you are. I SEE YOU! You check your blood sugar sometime, if at all. You take insulin a few times a week or when you feel like it. Usually when you get blurred vision or you’re running to the restroom 100 times per hour.
When you leave the house you are never fully prepared. You don’t take snacks because you’ll just stop at a drive thru. You may have your glucometer but no insulin. Insulin but no syringes. If you managed to bring both, you don’t bother to look up nutrition menus and try to count carbs.
Often you eat pasta/potatoes/pancakes etc…, bread sticks, some sugary drink (probably with a few refills) and top it off with dessert. One thing I think we can all attest to is most of those meals taste Ummm, Ummmm GOOD! But the question is, on most occasions, how do you feel an hour or more later? Not so good, for most diabetics.
I need you to know that you DESERVE to be FOUGHT for. You deserve an ADVOCATE! You deserve to wake up each morning and go to bed each night feeling good inside and out. You deserve to live without dizzy spells, running to the restroom as if you were a virtual faucet, feeling like your brain is foggy and incoherent on top of blurred vision.
You deserve to live without your mouth feeling like the Sahara Desert which causes you to drink non-stop due to highs. No to mention the increased appetite, and feeling terrible when you are low. All of these things can be greatly minimized by doing a few things differently.
If you are tired of feeling like crap. If you are tired of having mini panic attacks and feeling judged when you go to your Endo appointment with a high A1Cs. If you know there is room in your life to do better. NOT perfect but BETTER.
I am talking to you! NOW is the time to turn the corner and make some changes. Now is the time you let me fight for you. I want to meet you where you are. If you understand nutrition but struggle with finger sticks and shots, that’s where we’ll start.
If you have the sticks and shots down but need help with ways to limit your favorite foods that are not diabetic friendly, we’ll start there. If you have all that down and just need support because no one else in your life really understands what your day to day looks like. I am talking to YOU!
Diabetes can be a very lonely and isolating condition if you allow it. Maybe you’re just sad or possibly angry. You are having a hard time with the reality of your diagnosis, often asking “WHY ME?”
Together we will figure out what’s not working in your schedule or meal plan and we’ll create a new one. Sometimes diabetics are made to feel they must always be strong and never complain, but you can lay it on me. You can take the titanium “D” off your chest and BE YOURSELF. Share whatever you need to. Let me help you create a NEW REALITY.
Let me fight for you at a time when you may not be able to fight for yourself. In addition to being the mom of a son with Type 1. I am Licensed Marriage and Family Therapy Associate with the skills needed to help you take the first steps to a happier, healthier you.
If any of this resonated with you, it just might be time to get back on the wagon and turn this thing around. You deserve to be happy, healthy and live a long life.
Therefore, the question is, do you need an advocate? Do you need someone in your corner? Are you ready to start feeling better? Are your limbs, vision and organs too high a price to pay? If so, I am putting together a few opportunities for us to possibly work together. Keep your eyes peeled it’s coming soon.
In the meantime, click the link below to download my free PDF titled 6 Steps to Push Through Diabetes Overwhelm, so you can add healthy happy years to your life.
Oh Yeah, don't forget to join our Private Facebook group A Diabetic Type Life while you're at it. http://www.adiabetictypelife.com/
I can't wait to chat with you!
Be well & Test often,
Your Diabetes Advocate
FIGHT FOR YOUR LIFE!!
It's time to fight back!
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