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What Would You Sacrifice for the One You Love?

I’m just going to start out by saying I’ve been a little cranky and off edge the past few days. Maybe it’s because my husband and I have been changing the way we eat? It was three weeks ago that I was sitting on the couch thinking “I really want some ice cream”, and stopping myself because I was also feeling sludgey. So I’m cranky and irritated and maybe I’ll step on a few toes or hurt someone’s feelings. I don’t know!

I am part of a few online groups for diabetes. One is for the Tandem T:Slim pump. The other is for the Livongo One Touch Meter. I’m not diabetic, but there are a lot of parents of diabetics, I am not sure how many spouses of diabetics are lurking around there. We were talking about the benefits of the One Touch Meter. It’s amazing that the meter uploads to a cloud. If you are below 50 or above 400 (2.8 to 22.2 for those outside the US), a Livongo Health Coach will contact you to make sure you are okay. You can also set your account up to notify your spouse, parents, etc. Twice I have received a text to indicate that my husband was below 50. I don’t mind this at all! It’s a feature I love!

One of the other group members said that her significant other was receiving notifications for her low blood sugars, but turned it off, because he was tired of getting woken up at night. It seems that she was having too many and it was disturbing his sleep.

I’m disturbed by his attitude. Your supposed loved one is having a low blood sugar and you are worried about your sleep? Just as a reminder, the symptoms of a low blood sugar are:

  • confusion
  • heart palpitations
  • anxiety
  • shakiness
  • slurred speech
  • blurred vision

A diabetic suffering from hyperglycemia may also have the following “symptoms”:

  • excess sweating
  • excess hunger (explains why my husband will eat through the kitchen if I’m not managing. LOL)
  • FAINTING
  • BLACK OUT

Those last two seem more like problems than symptoms. Sometimes I get so very tired of helping my husband manage diabetes, but it’s not because of him, it’s because of IT. It can be frustrating to deal with one low on top of another, or many lows, many nights in a row. I get that. I don’t get the attitude of “it’s your problem, please don’t wake me”. Now if this other member had said something along the lines of “It’s usually okay, I am able to manage my lows relatively easy”, it would be one thing, but it was apparent that she was hurt by his attitude.

There have been a handful of times that I have heard stumbling around, or doors opening at night (and I’m deaf!) and woken up to check on things. My husband was having a low blood sugar and didn’t want to bother/ wake me. (that didn’t work out) It is much easier for ME, in my sleepy stupor to find him something to eat or drink than it is for him in his low blood sugar and sleepy stupor. No matter how tired I am, no matter how many nights in a row it happens, I will wake up and help him every single time. I am shocked that this isn’t a common theme among significant others or spouses.

My mom said it’s because I am caring and compassionate and that I go above and beyond in the care of my husband and his disease. My actions should be so typical among all of us that they are not noticeable. What I am doing shouldn’t be considered anything special, because it’s just me loving my husband and standing by his side, no matter when.

Is this really a foreign concept to people?

I told this lady she could call me and I would stay up all night with her. My cousin recently had a dream about my husband and his diabetes. I had a GPS device that showed all the diabetics in the area who were having low blood sugars. I was panicking and telling her “I have to get these off my screen! I need to help them all”. I really would. Not because I am anything special, but because diabetes is a huge beast to manage on your own, and everyone can use support. Especially your loved ones.

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I Love the Pump

It’s been over a month of pumping now. Can I just say how much I love this thing? I don’t know how my husband feels about it. ha ha, yes I do. He is wondering why we had to wait so long to get it. (ahem, the price could have something to do with that!)

Chad had cataract surgery today. We tested his blood sugar up the wazoo, reduced his basal flow on the pump, and he stayed in the normal range the entire time! When the nurses would come in and ask if anyone had done a blood sugar check, I would say “Yep, 143” or whatever it was. I wasn’t waiting around. 🙂

Another new love? The Livongo Blood Glucose Monitor. Omigosh! We have only had it since Tuesday and I really, REALLY like this thing. It is 3g connected (I think). Each time he tests, it uploads to his online account. Yesterday, he hadn’t called me for lunch like normal. I texted, no reply. I finally realized that I could look online and see if he had tested prior to lunch. He hadn’t, so I knew he hadn’t eaten and I could (lovingly) nag him. That’s not all. UNLIMITED test strips. They start you out with 300 test strips, but if you use more, they send you more. All this for $25 a month for to years? Yes, yes, and yes!

Between the unlimited use of the test strips and his pump, I am feeling really hopeful about getting this diabetes beast better managed!

What’s new with you?

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Four Weeks In

Today marks four weeks that my husband has been on an insulin pump. Four weeks out of nearly 45 years of diabetes. Wow.

I can honestly say that I wish we had had the money and the education to start this process when we first looked into it. We attended a pump information session about 10 years ago and it just didn’t work out. The counting carbs was a foreign concept to both of us. It seemed too difficult to take on that task in addition to all the regular life stuff that we had going on. Also, 10 years ago, the cost of a pump seemed prohibitive. Now, thanks to http://www.ynab.com I feel confident that we can come up with our portion of the pump cost.

We have been carb  counting for the past two or three years. I remember going into a Borders book store and looking through all of the diabetes related books. I settled on “Think Like a Pancreas”. The author, Gary Schreiner, is a fellow diabetic. He was able to explain some complicated terms in ways I could understand. Two and a half years ago, our precious BONUS baby was born. My husband was 47, and he knew that he needed to start taking his health seriously if he was going to live better, just so he could be with her for as long as possible. She is a miracle. 🙂 So armed with the info in Think Like a Pancreas, we started counting carbs. Now it seems like we’ve always done it.

We have finally figured out my husband’s night time basal rates. I can not express enough what a relief it is to feel confident that his blood sugar is not dropping when we should be resting. I admit that I still check on him at night. Most diabetics and loved ones of diabetics know about the cold, clammy sweat that accompanies a sudden drop in blood sugars. So I do the sweat test. 🙂 I feel like I have won the lottery every morning when he wakes up with a blood sugar that mirrors the one he went to bed with!

We are still tweaking his day time basal rates. We tested one segment of time on Saturday. In order to test the basal rates, you have to check your blood sugar every 2 hours, and not eat for 8 – 12 hours. This is so you know that your sugars are staying in the normal range without having to consume carbs. At about 4 hours, his blood sugar dipped a bit below 80, so we stopped the test, he ate, and we adjusted his basal for that time period. Now we just need another weekend so we can test it again.

I can not express enough how much I love this pump! It has simplified the procedure for my husband. He doesn’t have to do any mental math before dosing. He doesn’t have to remember if he has insulin left in his system, because the pump tracks it for him. In fact, the other night, he tested his blood sugar and when he put it into the pump for recording purposes, it warned him that with the insulin that was still calculated in his system, and his blood sugar, he was at risk for going low. WOW! Mind blown.

We still don’t know how much we are going to owe on the pump. Insurance gave us an estimate of benefits, but we have not received a final bill yet. I am making and selling handmade necklaces and bracelets to help ease the burden of the final cost. If you are interested in seeing them, shout out!

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Pumping: A 2 Week Update

As of today, my fabulous husband has been pumping insulin for two weeks. Today marks two weeks that we have been relearning diabetes. It was hard enough the first time around. I think it’s even more difficult when you know stuff, because the new things you are learning are competing with everything you already know!

There have been a lot of questions asked, material read, and adjustments made in the past two weeks. I’ve also had to explain things over and over… and over again. That’s okay, because I am the reader here. I enjoy it, and he’s finally “getting it”.

We have been through four site and cartridge changes, on our own. Well, mostly Chad does it on his own. I get to help hold the cartridge upright. I also get to clean up the mess it leaves behind. HA HA.

He is using the Tandem T:Slim. One thing I LOVE about this device is the ability to hook it up to the computer and upload all  of his blood sugars, insulin doses, etc. We have been able to make adjustments to his basal rate (the insulin that his constantly trickling) based on the graph reports.

We have had a few frustrating days. One or the other of us has given up, because we haven’t been getting the desired results. There were days that his blood sugar has spiked, dropped, leveled. A few days of that and it is frustrating! Fortunately neither one of us has given up on the exact same day. 🙂

On Friday night, he decided he would test his basal rate. Basal rates are tested with the following process, but don’t take MY word for it, please consult your medical professional!

  • Eat dinner, bolus for carbs and any correction units.
  • 4 hours after dinner and bolus, test blood sugar. If within an acceptable range, do nothing. (if low, eat, if high, dose and do the test another night)
  • Every 2 hours thereafter test blood sugar until 12 hours from last meal.

We ate at 6. Chad tested his blood sugar at 10pm, and then proceeded to test every 2 hours. His blood sugar dropped slightly at midnight, then leveled off to dropping ten units(?) every 2 hours, until 4am when he was low enough that he had to drink some chocolate milk. We tested another night, same results and it seems that he drops the most after the 2AM mark, so we adjusted his insulin to take effect at that time. Two nights in a row, his blood sugar has stayed steady! WHOO HOO! That was worth it. 🙂

Now we are working on the day time insulin trickle (the basal). Once we get the basal figured out for all hours, we will start making sure his correction doses and meal time boluses are correctly set.

I may have felt like pulling out my hair a few times. The last 2 weeks have lasted approximately 3 months. It really seems like he has been on the pump forever. It’s sort of like when the baby was a newborn and I thought she was never going to sleep and then I realized she was only 2 weeks old and hadn’t been sleep depriving me forever.

And a positive change? He has been saying no to the cookies and the donuts. 🙂 Win.

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Just Call Me a Super Hero

How’s that for an attention grabbing title?

I feel like a super hero after the night we had. Chad was set up on his pump yesterday! YAY. We went with the Tandem T:slim. It seemed to be operator friendly. He isn’t a techy guy and it’s the one he felt most comfortable with. It’s amazing that he can dose whenever. He doesn’t have to dread the shot. he doesn’t have to “catch it up later”, because he dreads the shot. WE LOVE THAT PART!

However, it was a bit of a rough night. I told him I would get up several times to check his blood sugar, since it was the first night on the pump. He was 125 at bedtime and more than 3 hours after dinner, which is an amazing blood sugar for him. For the first time ever, he didn’t eat a snack or anything. That trust and confidence was so hard! When I woke up at midnight, his blood sugar was 50. I gave him about 40 carbs of chocolate milk. I woke up at 3 to check and his blood sugar was 70. Another 40 carbs! When he woke up at 5, took forever in the bathroom,  was stumbling a bit, I got up and checked him. 36!!!!

I told him it was okay to go into work late. Usually he doesn’t. He gets back on the saddle and makes it into work on time, but I wanted to make sure he was okay first. I quickly googled “How long does Lantus stay in the system?” He was taking it twice a day, half a day’s dose at 8am and the other half at 8pm. His trainer set his pump up so his basal (this is the background insulin that runs continuously all day) didn’t start until after 8pm last night, but we are pretty sure he still had the Lantus from yesterday morning in his system as well, since it can last 18-26 hours! He conferred with his trainer this morning and she agreed that it was likely. Just to be safe she walked him through lowering the basal rate just a bit. (from 2.0 per hour to 1.8 per hour)

As far as the first day on the pump, he is loving it. He really likes not having to take shots. He loves that he can input his blood sugar and carbs and it will figure out his insulin dose. This is a new thing for us and we are fumbling around a bit, but in a week it should be second nature. He has done one infusion set. He will be doing a cartridge change and infusion change tomorrow morning with the trainer.

He has been approved for a CGM (continuous glucose monitor). This will be his next step.

I am hopeful that today will be a better day. He did end up going to work and got there just a little late. He is an excellent family provider and he hates missing time from work. Sometimes diabetes comes first!

ETA: I guess I should explain the super hero comment. I feel like a super hero after saving his life three times last night. :p I’m tired, it makes ME feel better.

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Diabetes is so easy to manage!

I think that anyone who has actually dealt with diabetes can hear the sarcasm dripping from that title. Or they were shocked and wondered what kind of snake oil I was going to sell. No snake oil here!

We are back to the insurance company only wanting to cover 1 test strip per day. “102 every 90 days”. Part of having any semblance of control is knowing where you are at. How can anyone do that on ONE test strip per day? I shouldn’t have done this, but I gave up. I said I would just pay out of pocket for them. I know that this gives the insurance  company what they want, which is more money in their pocket, but come on!

To break it down again, my husband has double insurance coverage. Generally the secondary picks up any co-pays or costs that the primary did not pay for. So, 3 test strips a day, leaves a $50 co-pay for us, which the secondary was picking up. They refused to pick up the $50 co-pay for 4-6 strips per day. It didn’t cost them any more, but they still denied it. Now they are back to saying that they will only cover the 102 every 90  days. We tried to explain that he is type 1, because the 102/90 is what they pay for type 2, while they do 102/30 for type 1, but somehow it’s not getting through. I just need the darn test strips, ok?

We have started the process to get an insulin pump for my husband. This should be helpful in managing his diabetes, if the stress of the process doesn’t kill him first. We met with the doctor, who sent  the information to the pump supply, who contacted insurance. Insurance will not consider paying for the device until he does a blood test that shows the level of c-peptides in his body. A Type 1 diabetic has low or no c-peptides, while a type 2 could have normal peptides. From my research, it seems that they would require a person with normal or high peptides to control their diabetes through diet and exercise. Since my husband is type 1, this is  not going to happen. 45 years of medical records seem to make little difference.

There are two requirements for the test:

  • fasting after midnight
  • blood sugar below 150

The first night, I woke up shortly before midnight and checked his blood sugar. It was 82, so I had him drink some chocolate milk. I woke up again at 3, and it was 62, so he had more chocolate milk. He could not do the test because he was no longer “fasting after midnight”. Last night, I checked him at midnight and he was a little on the high side, so I woke him up and had him take a shot. He was still too high this morning for the test, so we will have another go at it tonight.

It’s really frustrating that I know other diabetics who have taken this test, but they were not required to have a blood sugar under 150. Generally, he is under 180 in the morning, but it is rare that he is under 150. Even if he was under 150, there is no guarantee that it won’t go up between  here and the doctor’s office and waiting to be called in for the lab. Or, it could go the opposite way, he could be under 150, but drop rapidly because he has been fasting since midnight.

We will do this. WE WILL. I am flabbergasted at the amount of frustration that a insurance company is willing to cause a diabetic. He wants a pump to have better control over his diabetes. He wants a pump to have more normal blood sugars. Making my husband meet a list of requirements, although short, makes him feel like a failure when he doesn’t meet them.

We would love your prayers for better results tonight. If he could get this part out of the way, I know he will feel victorious.

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Hi, Hi, Hi

Or high, high, high, Whatever the case may be.

Chad had a doctor appointment yesterday. He got a cortisone shot in his hip, because he had what presented itself to be bursitis. His blood sugars have been pretty good, but after the appointment, he had a tough time keeping it below 300. It was fine at lunch, then skyrocketed after that. We could say it might be what he had for lunch, but it was left over dinner, so who knows. He was thinking it might be the cortisone shot.

Last night he took about 20 units of insulin to compensate for the high blood sugar and the birthday cupcakes we had for our 10 year old. This is way more than he usually takes, so I got up at 2AM to test his blood sugar. It had dropped a little, but it sky rocketed again this morning, and was still high near lunch time. He called his doctor and they said “Don’t eat carbs and go for a walk”. He texted me along with a “WTF” for emphasis and I said “Well,  that sounds like a pretty good plan, actually”. So he ditched the left over lasagna from his lunch, but ate everything else. He texted a bit ago and said his blood sugar was 160-something. So that stinky old doctor’s advice must’ve worked.

I told him to be patient and ride it out, because panicking creates the yo-yo affect, Sky rocket, plummet, over compensate, repeat steps, which is just frustrating. You really do have to be patient  with diabetes (when it’s not an emergency, OMG get the Glucagon situation). It’s hard to ride it out though, because we’re human and we want things to be better five minutes ago.

The good news is that his A1C is down to 6.8%! His doctor was impressed with his A1C and cholesterol numbers. His kidney function has declined a bit in the past year. I really wish they would give more information than just “kidney function is declining”. WHAT DOES THAT MEAN? I’m assuming that if it was  an emergency, they would say more?

And the pump lady called to set up an appointment. We are one step closer to pumping that man up. 🙂

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We Are Making Progress!

I know it’s been a little quiet around here. First my husband went out of town and I found myself with a lot of free time! The night he left, I started painting the bathroom. I’ve been meaning to for a long, long time. We’ve lived in this house for a whole lot of years. It’s been painted once. It was time..

Speaking of my husband being out of town. He survived. Hurray! To ease my mind, he tested his blood sugar at 1:00AM and texted the results to me. This way he wasn’t going 8 hours without testing his blood sugars. They did run a little high during the week, but we attributed that to all the eating out. The first night, his dinner was 90 carbs! 90!!!

So, he’s home and all is well. Yay. 🙂

We went to a new endocrinologist yesterday. I really, really liked her. I have been to the same clinic with my father, but a different doctor and I don’t really care for her. His doctor discredits a lot of what I say and doesn’t listen to me. My husband’s doctor was good about listening to both of us, answering our questions, giving advice, etc. She told us that diabetes is NOT an exact science and that there isn’t a one size fits all approach to it. I told her that we often feel like failures when his blood sugar is too high or too low. I prefer when it’s just right, but she told us that it’s really hard to hit that magic number. She was impressed with his A1C, which is interesting, because his general doctor is constantly telling us he needs to get it down. His endocrinologist said that a lot of times when the A1C is in the ideal ranges, it comes with the risk of low blood sugars. So he was looking good!

She put in a referral to the nutritionist who is also in charge of all things insulin pump related. She feels that he is an ideal candidate for it. Even with all the research I have done, I didn’t realize that he wouldn’t need to take his long acting insulin anymore! I know that pumps can be expensive, but I am hopeful that with double insurance coverage, they will cover a good portion of it.

So now we wait for his referral to go through. I am so excited about the process and next steps. His endocrinologist feels that he could be outfitted with a pump within the next 6 weeks. So exciting!