Every Day Struggles

The funny thing about diabetes is that no matter how good of control I have, just when I think things couldn't be going any smoother, this disease can easily bring me back down to reality in a matter of minutes.  Just last week in the car my husband and I were talking about how my blood sugars had been consistently really great recently. To validate our conversation I took out my insulin pump device to take a look at the numbers, and sure enough my average blood sugar between the last 7 to 60 days ranged from 100-118. For anyone out there who doesn't know, this is AMAZING, since typically people without diabetes usually fall within the 80-120 range on a daily basis.

Well, I must have forgotten to "knock on wood" at that moment, because ever since then I feel like I jinxed myself and have been met with several blood sugar challenges. Typically I will see "high" blood sugars here and there, but for some reason those highs have been creeping up on me more than expected these days. Now, there are definitely some contributing factors that I can guess are playing a part, a big one being pregnancy and hormones, but regardless of what is causing the blood sugars, I still get really down on myself for letting it get to that (even if I truly have the ability to control them or not).

My doctors and husband are really great at reassuring me that these highs are completely normal and from a medical perspective I understand that. For me though, the hard parts of having a high blood sugar include physically not feeling well (tired, grumpy, low energy, sometimes nausea) and feeling anxious about when it's going to come back down. From an emotional perspective, I have also had a very hard time accepting these recent highs. I am so used to being stable that when the higher blood sugars come out of nowhere I tend to beat myself up and feel extremely frustrated that I let it get that far.

I also really hate admitting to family and friends when my blood sugar is high for fear of their reactions. Mostly I get asked, "Are you okay?" (Yes, I'm fine!) and "Is there anything you need me to do?" (No, unfortunately you can't really do anything). I also fear what they might be thinking, like "She must be really bad at taking care of herself because she has a high blood sugar." Again, I am sure most people's reactions are out of care and concern, but there is a big part of me that doesn't want to seem weak or not in control, and I feel like when I let people know about high blood sugars, it doesn't look good for me.

So, what I need to do is take each meal or snack and minute, hour, and day in stride and do what I can during each of these to make sure I've tried my best. All I can do is be diligent because a big part of this disease is management, and it's not all about perfect control. I've got all the tools I need, from the technology to the support, and my part is learning to roll with the punches and continue to be more comfortable with the realities of diabetes.

And just to show how insignificant the last few days of some higher blood sugars have been, my most recent A1c as of yesterday is 5.8% (which calculates out to an average blood sugar over the last 3 months of 119). YAY for me!

It takes a village...

Since being pregnant I've tried more than ever to keep my blood sugars in a close to perfect range for not only my own health benefits, but for my baby's as well. I feel so very thankful for the team of doctors that are supportive of my efforts on a daily basis. I owe many thanks to this team, and as a result, my latest A1c test score is the absolute best I have accomplished since my diagnosis in 1998.

My newest A1c = 5.9%

So what does that mean? Most doctors consider a diabetic with an A1c under 7.0% to be in good control, and have a decreased chance of any diabetic related health issues. In order to really consider having a healthy pregnancy and baby, doctors highly suggest having an A1c under 7.0% and keeping blood sugars under or about 150.

Never being one to really shy away from a challenge and knowing all of the potential risk factors of pregnancy and diabetes, striving to keep my blood sugars under control is something I take very seriously (Sometimes maybe too seriously...).

But at any rate, an A1c of 5.9% is the equivalent of keeping an average blood sugar of 117 (Normal range for non-diabetics is 80-120). These test scores are a true testament to the daily and constant monitoring it takes not only from myself, but from the support of everyone sound me, from my husband to my family to of course the team of doctors that always are available for questions and concerns. The phrase "It takes a village..." truly exemplifies how I feel right now.

Can you have that?

I was having a really interesting conversation with my sister and husband yesterday about several diabetes-related thoughts and feelings. A a big topic of that conversation included how diabetics are sometimes treated by others. This ranged from reactions of people very close to diabetics (i.e. family members and friends) to how we are treated by the general public as well. Interestingly enough, it's often times our family and friends that are the most "annoying" (for lack of a better word), in terms of questions, comments, and reactions we receive.

Most of the time these reactions are natural and inquisitive. But my all time LEAST favorite question, that I get VERY often by a range of people is, "Can you have that?" Every time this question is related to a food item and I'm sure it's mean to be really quite endearing. I truly do appreciate it when you think of me when planning a meal, a party, or snacks. But please know that EVERY. SINGLE. TIME. my answer will be "Yes." I can eat whatever I want, it's purely a matter of insulin. That doesn't mean that most of the time I won't choose a lower carb option, but that's because I generally crave vegetables over pasta, regardless of my blood sugars.

It's taken awhile to get to the point with people I am close to to discuss how I feel about questions like these and I ultimately feel very lucky to have a husband who communicates so well, to the point where we have worked out a system of communication that doesn't bother me or make me feel like he is hovering over me. Additionally, I have several family members who understand the science behind it all, which really helps in terms of explaining this whole things. And the rest of my family have been around it for so long, that our communication has really increased, to the point where I feel like we are on the same page most of the time.

In the end, there are two things that have really helped in my relationships with others in terms of diabetes: education and communication. I think it's been extremely helpful that others around me know how it all works, how hard I work, and also can understand my lifestyle. I also feel very proud to be able to share my experiences, despite my own insecurities, fears, and embarrassment. I think sharing these things has only strengthened my relationships with others.

The Silver Lining

Each time I go to the doctor or am reminded of the scary medical concerns of not managing blood sugars, I am thankful for the strict regiment I have gotten accustomed to in terms of checking my blood sugars, keeping an eye on highs and lows, making regular and frequent doctor's appointments, and most importantly, keeping an eye on every piece of food that goes into my body. I've definitely done my fair share of complaining about managing all of this, and despite the fact that I live such a happy and healthy life, I think I have truly found the silver lining to all of this "madness" ....

Being pregnant AND a Type 1 diabetic adds a whole new element to tight control of blood sugars. Before I was pregnant, highs and lows happened (it's a normal part of this disease) but really the only person it physically affected was me. When my blood sugar was high, I didn't feel good and was tired and irritable. When my blood sugar was low, I got shaky and sweaty. But now, I'm not the only one feeling the affects of my blood sugar changes ... baby feels them too.

With this added sense of responsibility, it's truly all on me to monitor blood sugars extremely well. Ongoing high and low blood sugars could potentially affect the baby in a variety of ways and the last thing I would want to do is jeopardize this baby. I work with an AMAZING team of doctors who monitor my blood sugars, insulin levels, and diet on a daily and weekly basis. They require me to keep a log of everything I eat, all blood sugar checks (before and after meals), and insulin rates every day. Based on this information, we make changes weekly. It's a lot of work ... but well worth it!

So in all, I have to say, that if it weren't for the foundation of the last few years of taking really good care of myself, the feat of managing and checking blood sugars now would have seemed impossible because currently I am eating 6 small meals a day, checking my blood sugar about 10-15 times per day, and averaging a blood sugar of 100 (Perfection!). Sometimes I sit back and wonder how I would have done this without the foundation of being so diligent. So, despite the moaning and groaning out of frustration for how much work taking care of my diabetes was (and still is), there is a silver lining ... I was and am VERY prepared for what lies ahead with this pregnancy. Funny how life works out like that ... don't you think?

How is it fair?

While I don't have many ... actually, ANY, close friends or even relatives with Type 1 Diabetes, it seems like whenever someone I meet or work with finds out that I have diabetes, they always have a story about someone they know with either Type 1 or Type 2 Diabetes. A few months ago, a shirt I was wearing was showing off my insulin pump on my arm, and a parent at work noticed it and knew exactly what it was. Turns out, her neighbors and good friends have a 6 year old daughter with type 1 diabetes who also uses a wireless insulin pump.

Since then, the parent and I have had several conversations about the trials and tribulations of having a family member and friend with Type 1 Diabetes. This little girl was diagnosed with diabetes as a Toddler, and since then her parents have taken GREAT strides to turn their world upside down to care for her. Even going to the extent of sleeping in the same room as her, every night, to test her blood sugar every hour! The stress, concern, and time these parents have poured over this little girl are heroic, to say the least. But as parents of a diabetic, I would expect nothing less.

Through our conversations, and despite the fact that I've never met this family, the parent at my work and I have shared sadness, concern, and a great amount of empathy for this family. In some ways, I feel lucky and a little relieved for my family that I wasn't diagnosed until later in life. At 13 years old a large majority of responsibilities fell into my capable hands. At such an early though, there isn't a whole lot, if anything, a toddler can do to help out with daily injections, glucose monitoring, high and low blood sugars, and carbohydrate counting. It's just such a different life.

And then the other day, the parent walked into my work and said, "I've been thinking about you all morning." Turns out, this diabetic little girl has a brother who is 2 years old ... and he woke up with a blood sugar of 336. My heart sank. With no real connection to this family, I can hardly fathom the emotional turmoil and panic of realizing that not only did your life change 5 years ago with the diagnosis of your little girl, but now you're forced to re-live the pain, grief, and overwhelming stress of a second diagnosis as well. How is it hardly fair?

So I did some research and it turns out, siblings of a Type 1 diabetic have a 1 in 10 change of developing the disease by the age of 50.  There are tests that can be done to check for a higher likelihood of a sibling getting diabetes, but nothing is certain, just as in life. Understandably, we can all say, "There are worse things that could happen," but at the same time it doesn't diminish the reality of a diabetes diagnosis. It's not easy. It's not fun. It's hard work. And it's stressful. It's just not fair no matter how you slice it. And my heart and thoughts go out to all families who have been or are going through it.

"Is there anything I can do?"

It's a question I get asked all the time. When my Dexcom meter starts to beep. When my blood sugar is low. When my blood sugar is high. When nothing is happening with my blood sugars at all ... But out of care and concern, several family and friends are always asking the question, "Is there anything I can do for you?"

Throughout my teenage years I felt very alone. Isolated even. I can't blame anyone for my feeling this way, because deep down I know that I was never alone had I been able to tear down the emotional wall that I built. And now here I am, over 14 years later, with the same wall. Although I really do think that over the years several experiences, relationships, and even some maturity have broken away at parts of the wall, and even made it shorter, there are still moments when the wall is just as strong and stubborn as ever.

The teenager in me wants to answer this question with a big fat "No! There is absolutely nothing you can do!" or even, "Yeah, make it so I don't have diabetes anymore." That's what the bitter, resentful, isolated, and immature side of me wants to say a lot of the time when others are offering to help. And It's not even their fault. In my heart of hearts I know the question is asked out of care, concern, and maybe even helplessness. I'm sure there are those of you out there who don't really know what you can do, but offering to help somehow makes it better.

But the fact of the matter is that no matter how much I can try to let people into this world, I will still feel very alone. I appreciate, MORE THAN YOU KNOW, when you get my sugar pills, ask about my doctor appointments, and read this blog. But outside of that, managing the physical aspects of this disease is really a one-man job. I could never ask anyone to remind me to check my blood sugars, calculate insulin amounts, count my carbs, or correct for a high or low blood sugar. It's just not realistic.

But, you CAN continue to offer your help and support. And I surely CAN try and be more accepting of your help as well. It's truly hard sometimes to convey the emotional turmoil and stress that goes along with this disease, as well as the resentment when I just want to enjoy a nice hike with my friends but my brain is wrapped around the idea of a possible low blood sugar. I know I do a stellar job at managing blood sugars, but more often than not it's a chore I would gladly live without, just to know what it feels like to not have the anxiety and stress of it all.

The wall I built long ago started off as tall as anyone could imagine and I know I've come a long way with the help of so many. Each of you has helped in tearing apart bits and pieces that I am truly grateful for. Every day is a challenge but I will forever be grateful for all of you who help me to and try to break down that wall.

The Numbers

Nine days into 2013 and I found out that I had already met my health insurance deductible for the year. NINE! I initially freaked out for a little bit as I held a VERY large medical bill in my hand but as my optimistic husband pointed out, at least the rest of the year in medical bills won't be so bad ... I see the silver lining here, but still, to only take nine days to meet a yearly deductible for out of pocket expenses is pretty impressive, I have to admit.

So, as I was starring at the breakdown of medical expenses billed, what my insurance covered, and how much I owed the other day, it really got me thinking about exactly how much I spent in 2012 in medical costs. And the even bigger number: How much did my doctors charge me in 2012? So here's the breakdown:

Explanation of Benefits (calculated by: Me)

• Total amount billed in 2012 (including but not limited to: doctor visits, emergency services, blood work, medical device equipment) = $13,127.34
• What I paid for medical expenses (after health insurance discounts and coverage) = $2,763.15
• What I paid for Health Insurance Premiums = $3,840
• Approximately how much I paid for insulin = $250

• GRAND TOTAL for Out of Pocket expenses in 2012 = $6,853.15

I had never broken down my medical expenses in such detail before, although I had been guessing and budgeting to spend approximately $500 per month last year. The grand total above, divided between 12 months means I actually averaged about $571 per month in medical expenses in 2012.

After I did these calculations on my living room floor about an hour ago I have been going back and forth with two main thoughts:

1. I could afford another car payment with that! Or continue to put away even more money in savings ... OR think of all the shoes a woman could buy with that money! The options are seeming endless right now. And for a young couple like us, $500 can make a difference on a monthly basis and I hate having this disease even more for the financial burden it seems to put on me.
2. On the other hand, it also seems like a small price to pay for my overall health and well being. There really isn't a price one can put on happiness and health, and if this is my price to pay for being able to live the best and most healthy life possible, then I have absolutely no problem with it. It is what it is, and that $571 per month is keeping me alive and kicking 365 days a year. And ultimately I am thankful for that.

Bragging ... just a little

I'll make this short and sweet, but I've reached my proudest accomplishment yet in terms of my diabetes management:

a 6.1% a1c test

This test measures average blood glucose control over a 3 month period and 6.1% is my lowest ever! Not only am I feeling great about it, but also extremely proud that this took into account blood sugars from October, November, and December when holidays and sugary foods were more than abundant and blood sugar control tends to be a little less than stellar, to say the least.

If I could tell my 14 year old self (with an a1c test of 13% by the way) that this was possible, I would gladly travel back in time to do so. There is no greater feeling of personal accomplishment than this. Just ask my doctor, he said I'm one of his very best patients. I just can't lie, once the class pet, always the class pet :-) And boy does it feel good!

What's your excuse?

It must be the start of a New Year, because all of a sudden I've had a renewed outlook on probably the number one thing most of us promise to do each year ... get in shape. Over the last year I had up and down waves of energy to stick with, and then not stick with, an exercise plan. I did have some medical issues that prevented me from being the active person I wanted to be, but nonetheless, all excuses aside, here I am, 24 days into January sticking with my restored sense of amping up my activity level.

So here's a little glimpse into a "normal" workout routine for me:

1. Talk myself into exercising when I get home from work (think about it for 30 minutes during my drive home from work) ... You can do this!
2. Have a scoop of peanut butter when I get home (protein will be good for my exercise, right?!)
3. I've renewed my "can do" mentality, so let's get excited and put on my new workout clothes that are so cute and comfortable!
4. Check my blood sugar ... We're good at 120.
5. Climb aboard the elliptical machine and make sure I have all of the items I need: water (check!), Dexcom glucose monitor (check), cell phone (check), and sugar pills (check!)
6. Start pedaling ... keep going ... it's only been 5 minutes? ... You can make it to 45 today! ... Okay, at least make it to 20 minutes ... Okay Danielle, If you're stopping at 20 minutes, you'll have to do extra an extra leg workout!
7. SERIOUSLY?! It's only been 10 minutes??? .... And now my Dexcom is beeping, what does it want now?
8. Climb off the elliptical, check my blood sugar. It's at 95 but already falling fast. Climb back on the machine to get going again, but make sure to keep a close eye on the blood sugars.
9. 15 minutes later, Dex is beeping at me again. At least I've been pedaling for almost 30 minutes but let's check the blood sugar again: 60. 
10. Pour myself a glass of juice (sugar pills are too chalky!) and wait 10 minutes to stop feeling the effects of a low blood sugar: clammy, disoriented, and weak.
11. Alright, where was I? Oh yes, today is a leg workout! Lunges here we go .... 
12. After a few sets of something, I'm still a little wobbly from the low blood sugar and also getting nervous that I am home alone and should something happen because my blood sugar got too low, I'd be all alone ... now I'm getting a little panicky.
13. I'll text my husband to let him know I'm exercising ... if he doesn't hear from me in 20 minutes, he should call to make sure I'm still conscious :-)
14. Back to the lunges! 5 ... 4 .... 3 .... 2 .... 1... DONE!
15. Blood sugar check: 85 and holding. Ta Da!!

To be honest, I have a lot of the same conversations that I think several people have with themselves when it comes to actually talking myself into exercising in the first place, because I'll be honest with the fact that I would much rather enjoy a glass (or 3) of red wine and the couch in my sweat pants when I got home from work. Besides, my job keeps me active enough ... right!? There are a million reasons to talk myself out of exercising, and worrying about low blood sugars is just one more to add to that pile of excuses.

For a long time I would use the excuse that I couldn't exercise for fear of low blood sugars, because low blood sugars really are scary! Additionally, it's a fact that medically it's not recommended to work out with high blood sugars either. So the key is to start an exercise routine at just the right blood sugar (for me that's between 120 and 140) which is a feat that begins 2-4 hours before exercising can even happen. Next I have to keep a close eye on my blood sugars during my workout routine (which is SO annoying and hard not to use as another excuse not to exercise) and make sure I have sugar pills handy just in case. 9 times out of 10, I have to stop and correct a low blood sugar. That's just a reality.

I may not be able to last a full hour and participating in an entire and intense class at a gym seems impossible. But then again, I used to think that establishing a consistent routine in the first place would be impossible. I'm really looking forward to continuing to stay on an exercise regiment, and I am especially loving how I am feeling by the way (only 5 more pounds to go until I reach my wedding weight, woo hoo).

Moving Forward

In my experience, there are a lot of negative stereotypes related to Type 1 Diabetes, including the biggest of them all: the potential negative affects to one's health. From the first day I was diagnosed, doctor's have used the same scary speech about proper blood sugar care in order to avoid potential health problems in the future, ranging from eye complications (glaucoma and cataracts) to foot complications (nerve damage and amputation) to heart disease and high blood pressure, just to name a few. The list of POTENTIAL complications is long, scary, and overwhelming yet completely avoidable with proper care.

And while my care routine is stellar and my blood sugar control is that of an "A+ student," according to my doctors (Go me!), when additional medical problems do arise in my life it's hard not to ask the question, "Is this related to diabetes?" And while my team of doctor's swear up and down and side to side that what is happening has nothing to do with diabetes, I still can't help but replay the last few weeks of blood sugars in my mind. Was it the high blood sugar I had in the middle of the night? Did that unexpected low cause this? All questions I have posed with the response of "Not at all!" from my doctors.

So while I appreciate the reassuring comments that my diabetes control and management is not a factor, and I feel like I should be proud of that fact, it leads to even more disappointment, frustration, and questions. 14 years ago I was handed a diagnosis that changed my life forever, in every way possible. I grappled with feelings of not being normal, asking "why me?", and feeling like my body's normal functions had failed me. And yet again, these feelings have overwhelmed me and taken over my brain and my conversations this week.

Just like the reason I got diabetes in the first place, I may never know what caused this. But thanks to my supportive and positive team of doctors (and of course the family and friend support around me), we're moving forward to find treatment. I've overcome a lot of hurdles with diabetes and found a way to make it work successfully. My brain is already wired to succeed and be strong, so I am hoping to use that to move forward with this. Just like diabetes there will be days of anger and sadness, but in the end I am hoping that the result of this journey will bring joy, happiness, and hope to many.