Great appointment

Today we saw Dr Cavale. Liver, Kidney, cholesterol, and blood pressure all perfect. A1C was 6.6%!!!! seems that changing the site for the pump to his leg did wonders. So exciting!! We also talked to him about the artificial pancreas and about how a type 1 pancreas functions. He taught us that just the "tail" of Vince's pancreas is not working, the rest of it still functions in breaking down fat for the body, so it isn't just taking up room in his belly!!we also went to see Dr Antelo because the topamax is causing horrible stomach pains. We expressed that Lyrica is the only thing that helps. He suggested taking a low dose every day. We agreed that should help. Great day!

I Know I Wouldn't Believe Me...

Something happened. It was strange. I know if someone told me this I would think they were crazy!! No way that could be true. Must be in their head. Well, here is what happened. In the past I have experienced tingling in my big toes when laying in bed off and on. It is strange and uncomfortable but doesn’t last too long so I shake it off figuring I have bad circulation (which may be the case but I have never checked into it). Then it hit me last night. I stood up from the dinner table and took a trip to the restroom. As I sat down (haha) I felt a stabbing pain on the bottom of my right foot. ‘What in the world is on my foot’ I thought. I quickly finished my business and grabbed my foot in desperation of getting whatever was stabbing me off the bottom of my foot. As I look at my foot, I am shocked. Nothing was there. I examined it over and over for anything that could possibly be hurting me so much, but nothing. I rubbed my foot and attempted to walk it off. But the pain got worse. It was in one particular spot on the bottom of my foot. It felt like someone took a tack and jabbed it into the bottom of my foot. I told Vince what was happening. He said ‘that sure sounds like nerve pain to me’. After about 30 mins or more it finally calmed and eventually went away. I asked Vince if he thought it was connected to my tingling toes. He tthought so. I said, maybe I should get it looked at, but who would ever believe me? I thought of maybe making an appointment with one of Vince’s doctors but what are the odds of me having a problem, when my husband has the same disease. They will think I am imagining it and that I am crazy!!!! I know I would think I was crazy. I have decided that at Vince’s next pain management appointment I will talk to his doctor. We are fairly close with that doctor and maybe I can at least ask what could cause nerve pain in the average healthy human. Vince thinks maybe it is because I am sitting all day at work and then I come home and sit some more. That could be it. But it was so horrible to feel that pain. To think Vince feels it all day everyday and probably on a larger scale made me so sad.

Carelink Is Great

This is a wonderful tool that Minimed offers with their pump. We can track the trends and try to correct them before the A1C check up!

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A Great Thing!

Could the day come when I can leave Vince alone overnight or for a long period of time without too much worry? Honestly, it depends on a lot of factors, however, it seems we are getting one step closer to this becoming a reality. This new device that is in the early stages of being created would bring glucose sensors to a new level. First of all, it is not inserted under the skin. It sits on top of the skin on the abdomen. There is also no calibrations with finger sticks and no warm up time. This allows the user to wear it as often or as infrequent as they want. Best of all, they say that it transmits to your smart phone with the data. Once an alarm sounds, if the user does not attend to it, you can have the device set up to automatically call a phone number you program. The person would be called and alerted that the user is not responding to the alarms on the device. This would inform the person on the other end that the user could potentially be in trouble. This is yet another potential godsend just as the Minimed Revel pump and sensor has been for Vince and I. I hope this becomes available soon!

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A Picture is Worth A Thousand Words

This is what my Sunday mornings consist of. Getting the pills ready for a new week. Between medications and necessary vitamins, you can see this is a job and a half. It scares me to see it all in this picture. The insulin and pump accessories are not even shown. But this is what is needed in order to keep vince going and to keep him as healthy and strong as possible.

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Not always pretty

I wanted to show a not so great 24 hour shot of Vince's numbers. Seems he is battling highs again. Hopefully it doesn't last!

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The Battle

Numbers have been pretty good lately. Well as far as the highs go. The problem when your numbers run good is that you tend to battle more lows, which we are. As you can see this one dipped fast. Just about an hour before, he was 165 and just as we finished dinner, the low alarm rang. Fingerstick confirmed a 59. So to lower vince's A1C, we are back to the same problem as usual, the low battle, however he we win every time!!

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The Cold Has Come

Well, fall is here. I woke up to a 50 degree morning and Vince woke up with a cold. This seems to always happen to him when the weather changes. Hopefully it doesn't hit him to hard. Here is a shot of the last 12 hours. Not to bad. Hopefully it continues!

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Think We Are On To Something!

I am putting my new Smartphone to good use! Gives you a chance to see all the numbers I talk about. Vince's site is still on his leg and readings have been very good. Highs and lows will never go away, but there seems to be less lately. I am still hoping this just isn't a phase.

Here is a picture of the 12 hour readings graph. Pretty good huh?

And here is the last 24 hours of numbers. Highest number in the last 24 hours was 165. Can't complain at that!!!

I am very excited, obviously. I am just hoping its not a phase! Will keep you updated!

CGM: Not Always Perfectly Accurate But Still A Blessing

This morning as I looked at Vince’s pump before leaving for work, the following appeared before me:

Although this looks great, my sixth sense of detecting low reactions has now broadened to including when not to trust the CGM completely. I went ahead and did a finger stick to double check and this is what I got:

I decided this was a great time to post some pictures of our daily life of numbers so I grabbed my phone and shot a few; after getting him a drink of course! The numbers speak for themselves. A finger stick is always necessary but the CGM is great at giving you an idea on what your doing and where your headed. Might I add, I didn’t realize what a beating the poor pump takes until I saw this picture?! I think it is time to clean off the blood smears from the finger sticks, what do you think?! Ew! Although, I am sure he isn't the only one! You may be wondering what all of the white marks are. Well, due to the retinopathy, Vince has very little depth perception left so when walking around the house and such, sometimes he misjudges and bumps the wall. On top of that, the pump hangs from his pants pocket or off the bottom of his shirt so it can get bumped around.

While taking the pictures this morning, a thought dawned on me. You see, we recently upgraded to smart phones. We were in the stone age before. Didn’t text or use the web! I know, horrible! So now that we have smart phones, I realized something. If I am ever unsure if Vince is okay, he can text me a picture of his pump or finger stick reading! You see, sometimes, I might suspect him of being low when talking to him on the phone and I have to play detective to be sure he is okay. This is a great way for me to know!

Hoping It Lasts!

It seems that since changing Vince's pump site to his thigh, his numbers have improved. Could his stomach be that scared that it was not allowing for proper absorption? In the last 24 hours, he has stayed steady in the lower 100's and only peaked to 160 after meals. I can't believe the difference! I hope it's not just a coincidence and that it is truly the new site area! If this lasts, it could mean less corrections, less insulin, and could aid in less weight gain! Here's to hoping it lasts!

It's That Time Again!

Today was Vince's three month Endocrinologist check up. All blood work was taken and the results are in. Kidneys, liver, cholesterol, and blood pressure numbers are all fantastic! Vitamin D level is still lower than recommended however. This is something that is very commonly seen in diabetics. Vince is on weekly supplement and they suggested he continue and see how it is next time around. This has been an ongoing issue but it isn't a severe problem, so it is just something they watch and treat as they can. He was weighed as usual and is continuing to lose weight as well which was so great for us to find out. The weight loss slowed for the time being but as long as it is less and not more, we are in good shape!! Aside from kidney function, our big concern every three months is how is A1C is doing. So where are we at this month? 7.0%! down from the last visit. They looked at all of his glucose readings and decided not to change anything for now. It seems that one day his levels are spectacular at around 90-130 all day long and other days, he runs high all day long. Doc said there is really no explanation left for the highs. The only thing he could think of is the infusion site. You see, for the last 10-15 years, he has used his stomach for his injections and infusion sites. He used his arm and leg when he was small, but then moved to the stomach. The doctor said although the insulin is being infused into the body, it is possible that over the years, to much scar tissue has occurred, resulting in the insulin not being able to be absorbed properly when the site is sitting at certain spots. He suggested Vince try placing the site on his thigh or upper rear since these areas are scar tissue free. He wasn't to excited about using his back-side since he would have trouble reaching it and seeing it to be sure all was well, so he chose the thigh. Today happened to be a site change day, so tonight, I loaded it up and injected it into his thigh. We will see over the next few days how his sugar reacts to the new site area. Now that I have recorded all of the medical stuff here, I should also write about a new doctor we were introduced to at the office. At the office, there is Vince's doctor and a nurse practitioner. They prefer patients to see the doctor once a year and the nurse the other three visits during the year. We did this at first however, we were not overly thrilled with the nurse so we asked to make all of the appointments with the doctor and they agreed. I mean, WE are paying THEM for the care, so I think we should have a say in who he sees. Well, today when the doctor took us back, there was a young woman in the room. He introduced us to her and explained she is a new doctor that joined the practice. We were open minded at first. The doctor knows Vince and he stayed and went over the normal findings with us. He then left the room for the new doctor to do, umm, whatever it was she had to do. She listened to Vince's chest, felt (well, poked the heck out of) his throat, asked him if his feet tingled about three times after Vince said he has neuropathy. He also told her a few times that he has retinopathy and she said did you recently have treatments? Vince was like, umm, yeah, years ago...(it's in his record!!) she then asked to LOOK at his eye. We are still not sure what that was all about. Did she think she could see the retinopathy by just looking at it? This is when we started to become skeptical. As we were sitting there, she went over his current medications and updated his file in their computer. Well, she tried, but as she said herself, she went to medical school, not computer school. Umm, how is a young doctor that just graduated not computer savvy or literate? So Vince's doctor came back and took over and got the necessary scripts printed out and sent us on our way. Vince and I both asked each other what in the world she was doing. This wasn't a wellness exam at the family doctor! This is a specialists office. She is supposed to be an endocrinologist. She didn't give us to much faith that she knew endocrinology too well though. Even when she was getting the blood work paperwork together, she put fasting and when the doctor looked at it to help her, he said he doesn't need to fast this time. I tend to not ask them to fast unless it's absolutely needed. Duh, these ARE diabetics they are dealing with! I think I could have filled out the paperwork better than she did! I know all doctors have to start somewhere, but we just feel that she is way to inexperienced to deal with all that Vince has going on. We requested the next appointment with his regular doctor and will continue to do so. Other than that little hiccup, all went well!!

In The Dark

Could something like a hurricane affect Vince’s Diabetes? Maybe, maybe not. It would have depended if Diabetes decided to cooperate. So did it with Hurricane Irene? Yes and No. Never a straight answer with Diabetes, is it?
 
When the worst of the storm was over, on Sunday, Vince was sore, but all in all his pain faired pretty well, considering all of the rain. Our power went out that morning at 9:30AM, so he just rested and slept off and on most of the day. Sunday was a site and sensor change day, so early in the evening, before it got dark, we changed his site and put on a new sensor with plenty of time to calibrate before the sun went down. At this point, his sugar was hovering around 80 and his sensor was not working due to the site change. I had to leave to transfer our food to his Mom’s refrigerator in hopes of saving it, so before I left, I made sure he was sipping some regular sweetened tea and we decided to try to get the sensor to work when I got home, giving it about another hour to set. Apparently, I picked a bad spot on his stomach because it was still not working when I got back. About 2 hours later (total) we decided to start all over. By this point it was dark. After eating by candle light and flash light, we got out a new sensor and I carefully took off the old one and put on the new. About 15 minutes later, it was ready to go. By this point it was around 8:30PM and with no power, Vince was not going to stay up late. Knowing the sensor was going to wake us up in about 2 hours, we took the flash light and the candle/lighter (just in case we needed it) and headed to bed. Around 11:30PM we were awoken by the power coming back on. I then fell asleep and woke up at 1:30AM and found Vince was not in bed. I found him in the living room drinking some soda. He said he went low. I made sure his sensor was up and running and I went back to bed. In the morning, I tested him before leaving and a 90 came on the screen. Not too bad considering we did all the site changes and soda sipping in the dark.

Giving Vince Credit

We have been working on how we can relieve some of my stress and how Vince can make himself feel needed and useful again. It's so hard when you are as young as him (now 31) and you are so limited. This isn't how he ever imagined his life, or mine for that matter. In fact, off the subject a little bit here, but a few weeks ago Vince and I had similar dreams two nights in a row. One night he dreamt that he went back to work, but couldn't do anything because of his pain and weakness. He didn't mention this dream to me until the next night when I told him about a dream that I had where he applied for an exterminating job and got the job but never told the manager of his conditions and then had trouble standing up from the chair he was in. I think it just shows how much I want him to have a normal life, and also how much he wants to work and be normal. He tells me and his mom all the time how much he enjoyed his (short) career and how he would give anything to get it back. It's so sad. It's not fair. Not fair to him and not fair to me as his wife. Only (now) 27 years old and being the breadwinner of the house, taking care of a sick husband all while trying to figure out how to have a family. Sure, there are a lot of options, but why can't just one thing be easy for us? Because life is not fair and it just plain sucks. There is no better answer. Okay, I went off on a rant there for a little bit, but back to what I wanted to post about. We have found some household chores that Vince can do, and it has been a big help to me. Through talking with our therapist, I have realized that although I have to take over 99% of the duties in our life and in our home, it seems that maybe I have taken over the last 1% out of habit. It is easier for me just to do it all since I have to do almost all of it anyway. But in doing this, it seems that I have become overwhelmed and Vince is left with low self esteem and a feeling of uselessness. You see, when Vince was working, it was all he could do to get out of bed, go to work, and get back home. He didn't have any energy left in him to do any of the household things so I took over in hopes that he would work as long as he could, which he did. Now that he isn't working, although he has a lot of physical barriers, there are a few simple things we have discovered he can do and wants to do! I have discovered that he is a great duster and a great waste basket emptier. He is also now in charge of feeding the cat, putting away his clothes after I do the wash, and dust mopping the kitchen floor. These may sound like very simple things, which they are, but these are the things that he is capable of doing and it gives him some sense of responsibility back. He is starting to feel better knowing he is helping me in ways that he is able to. I still have a lot on my plate but these are a few less things that I have to worry about, and it's been a great help! We are continuing to look for different things that he can help with. 

Disaster Avoided

Yesterday was a site and sensor change day. At around 7:30PM, off came the old site and sensor and inserted were fresh new ones. About two hours later the sensor was calibrated and Vince was good to go for aprox 6 hours until the next calibration time. Around 3:30AM I awoke to the beeps. I nudged Vince to tend to the alarm but he was too drowsy so he asked for my help. I got up, turned on the light and saw it was asking for a meter BG. This means a finger stick reading to calibrate the new sensor. I stuck his finger and a 46 appeared on the screen. CRAP! We were not alerted to the potential low because it was calibration time and we were sleeping through the alarm for a little while. I asked Vince if he felt low and he said no. I gave him some iced tea and some candy fruit slices and we went back to bed. Sometime later after calming my nerves, I fell asleep, only to be awoken again by the alarm which still thought he was low. I tested him again at 6:30AM before I went to work and he was 189. It calibrated again. He should be good now I thought.
What would have happened if he didn’t have the sensor on? What if the beeping didn’t wake us? Even though it didn’t wake us to tell us that he was low, it still woke us up enough to figure it out. Would this have been a potential disaster night? Would he have had a night like before the sensor and passed out from the low? Could have been.

Doctor's Visits: The Good and the Bad

Today was a day full of doctor visits. We started bright and early at the eye doctor for Vince's three month check up. Everything checked out good and they said Vince's left eye (the better of the two) has actually slightly improved, going from 20/40 to 20/30 since his visit 3 months ago. The right eye is stable at some number that I am not even sure of. I think I heard a 20/200 or 20/400 or something at a past doctor appointment but it is so far gone, that they don't even give it a true number. They just concentrate on keeping the other eye at it's best. Again they asked about Vince's A1C and were happy with where it is at. 
After that we were off to the pain doctor. We updated the doctor about the medication that Vince decided to stop taking and the doctor agreed that it was way to much medication to take and not see results. We talked about the pain medication as well. We expressed Vince's desire to get off the pain medication(s) but we also admitted that the pain has not subsided enough to do that. The doctor suggested raising the long acting pain medication and lowering the fast acting pain medication in hopes that he won't have so many highs and lows with the breakthrough pain. I am never happy when I hear of anything being raised but if it means less of the short acting med and better pain control, then I suppose it is worth it. We will see in the next month or so how it goes.
We had some time to waste until the next stop, so we went to the drug store to drop off the new pain medication prescription and then went to lunch. After a nice lunch, it was off to the pulminologist for a breathing test and a second visit with this new doctor. After the test, Vince and I sat down with the doctor and showed him some of the records that he asked Vince to keep over the last month or so with the breathing tool at home. He said it showed there was a slight issue. The doctor then took a look at the results from the test they gave Vince at todays visit. He said it is showing slight asthma and explained the readings to us. He first suggested that Vince continue using the albuteral inhaler as needed just as he has been doing, but after listening to his chest he said Vince should be on something a bit more to prevent the wheezing. We immediately spoke up about the steroid issue and said absolutely not. He agreed. He then suggested Singular which is not a steroid and will probably help to prevent the wheezing. He said the asthma has probably come about due to Vince's weight. We explained that he has lost about 40 pounds in the last 4-5 months or so and asked if that continues, will it go away. He believes it will. So we left with one more medication and yet another reason for weight loss. Since I know I am gaining as well, It is definitely time to crack down, but of course that is easier said than done. Especially when you are looking at two major emotional eaters, but all we can do is try, right? After a long day, I dropped Vince off at home for a nap and then headed back out to get our car inspected. A day off without rest for me but we got a lot done.

A Second Black Bag

Vince and I have decided that it would be a good idea to have more of a back up plan on hand while out and about. I don't think we need it most of the time, but that one time we do, we would be glad we had it. I am not a fan of keeping diabetic supplies and snacks in the car due to the extreme temperatures so I have made a second blag bag for him. It is small enough for me to keep in my purse at all times, so we are always prepared. Here is a picture. Notice the note card? I had this crazy thought that I would have a car accident and when the EMT's would look through my purse, they would see the diabetes supplies and think I was diabetic. Or the thought that if both of us were in the car, they may think I am the diabetic instead of Vince. I think I am being a little silly though since he has an insulin pump attached to him LOL But I always say, better safe than sorry, right?

Life In A Bag

It’s 11:30PM and Vince and I are on our way to the airport to pick up my mom whose flight that was supposed to arrive at the decent hour of 6:30PM was cancelled and she was put on this late night flight. It’s way past my “bedtime” and I have to get up for work early in the morning. I am already worried about how I will make it through a Monday on such little sleep so we rush out the door to get her and get home as quickly as possible. We run out the door in our pajamas and hop in the car. It should be a just over an hour, there and back. About 15 minutes down the road, I realize Vince didn’t grab his black bag on the way out the door. I didn’t say anything at first. I was thinking, what can happen in 1 hour (or so)? It’s all highway there, and we would just be sitting in the car waiting for her to come out, and all highway back. What if he goes low? No glucose! Note to self, put glucose in my purse, since I always have that with me in the car. Could I pull of the highway to a gas station if needed? Probably wouldn’t want to do that at this time of night in the city. Would I pull over and call 911? Or would I wait until we get to the airport and see if there is a vending machine? If not, I suppose I could ask people around us if they have sugar, right? Maybe my mom will have something in her bag he could eat? I doubt it since you are limited as to what can be brought on planes these days. At this point, I mention to Vince that he didn’t bring his bag. He tells me that he checked his sugar before we left (which I didn’t realize) and that it was 167. Whew, we should be fine. Sometimes I need to remember that Vince takes care of himself and that I don’t need to worry as much as I do, but that is easier said than done. When at the airport, the CGM high alarm sounds and he takes a bolus. I said, are you sure you want to do that? He said it jumped to 300 and he had to. I agree. We also agree I should have glucose in my purse for next time just in case. The high alarm rings all the way home but this is one time that I don’t mind that he spiked high, since we were not prepared for a low. At least he had insulin on hand in his handy dandy pump! By the time we got home, it was an hour and a half later, and Vince was sitting in the car the entire time. His legs were not in great shape so I helped him into the house. Other than sore legs, the airport run didn’t turn into a potential low sugar no black bag disaster.

Where Did That Come From?

As I drove home from work, a thought crept into my mind. A thought that I have worked very hard to push far away as much as possible. It was the "what if Vince dies" thought. I am not sure where this came from today. I had a decent day at work. No episodes at home with Vince. But still, as I drove home to Vince, I caught myself thinking about what would happen if he died. He normally naps in the afternoon, so as I am driving, I am thinking that I will go home to wake him. And then it starts. What if I walk in the house and find him not breathing? Who would I call for help? 911 I suppose, and then family? I am certified for CPR (a great perk at work) but do I remember how to perform it? I have the manual in the magazine rack in the bathroom. But if it was an emergency, I am sure I wouldn't be able to do it. What if I do it wrong? I guess something would be better than nothing, right? What if he doesn't make it? How will I go on without him emotionally? I don't think I could even go home. No, definitely not. Where would I go? Everything around me would have "Vince" written all over it. How would I survive financially? I suppose there is always life insurance. Would I even want the money for myself? No, it would be better for him to just be here, darn it! I guess I could get a second job. I wouldn't have anything to be home for anyway at that point. Then I finally realize what is going through my head, and I snap myself out of it. I ask myself where that came from and I don't have an answer. I used to sit at my desk at work and stare at the photos I have on my desk of me and him, and think about all of the same questions and fears. I have been good lately at not letting myself go there, but it seems every once in a while, my mind ignores me and goes there anyway. I would think that any married person would have this fear, but it seems that for me, it is more serious situations and more often. The only thing I can imagine is that the one time when I awoke in bed with him, years ago, to find him unconscious. Since then, the fear has been real.

Ummm...

I just have to post about how disorganized our government can be. Vince just got a jury duty notice. Do they not check the disability records before sending these out? Now, it is up to us to call and explain that he cannot attend because he is disabled? I sure hope that is an excusable reason! This is crazy! Okay, just had to get that out :)


Update: I called the jury office and they said all they need to see is Vince's SSDI award letter and he will be excused. Whew!

I just sit in silence...

I sit out back of Vince's nephews new house as we celebrate with a housewarming party. It's 95 degrees out but there is a lot of trees of shade and a breeze and it was so peaceful. What a beautiful house and private yard to BBQ in! As Vince and I talk with one of his brothers, and a couple that stopped by from across the street, the pain starts, full force. Vince cringes in pain as I just sit there, staring at the ground with a blank look on my face. His brother asks him if he is okay and Vince just nods. I take a glance at the clock on my phone to see if he is due for a pain pill, and he is. Just as I am about to ask him if he wants some medicine, he asks me for his black bag. I am already out of my chair, and on the way to the car to retrieve it. Inside it, he carries his glucose meter and test strips, glucose tablets, alcohol wipes, and his pain medicine. I hand it to him and he takes a pill. The conversation continues amongst him and I and the others. Later in the evening as we talk about the day, the episode came up. It made me think. Why do I just sit in silence when he has an episode in front of people. I suppose it is because I know I can't do anything. What if I look at the others around us and continue talking? Will they wonder why I am not doing anything to help him? Do they realize there is nothing that anyone can do? Or maybe it's because I try not to show how sad it makes me to see him. Maybe by sitting there quietly, staring into space for those few seconds of extreme pain and shocks, I am just trying not to get emotional. I suppose it is all of the above.

Minimed Enlite Sensor

A fellow blogger told me about a new version of the minimed sensor called Enlite. It is supposed to be easier to insert than the current sensor for the minimed CGM. After researching it, it seems that it is not yet available in the US. Here's to hoping that it will come soon! It is inserted at a 90 degree angle instead of the 45 degree angle of the current sensor which would make for easier, more comfortable insertion. I have to say, as much as we LOVE Vince's Minimed Revel pump and sensor, it took some time getting used to the sensor and knowing it's quarks. But it goes without saying, we LOVE it nonetheless!!

Made to the weekend! Whew!

I have been looking forward to my weekends very much so lately. I have not been sleeping too well due to Vince being in pain at night along with blood sugar lows at the same time. I am feeling very overwhelmed and not getting good sleep is not helping the situation. Vince has also been having a hard time with his nausea caused from one of his medications which is making him even more miserable. I finally called the doctor about it and he suggested weaning him down a bit to see if that helps. Of course, this is the one medication, aside from the pain meds, that helps him, so we don’t want to wean him down too much. We have tried cutting his morning dose in half since his nausea is worse during the day and that has helped that past few days, so we will continue that for now.
 
Vince and I have started seeing a therapist to help each of deal with the stress we are under. I feel like I complain a lot. Well, I have a lot to complain about, but when I vent to others, I feel like I am just complaining and I don’t like that. We have seen the therapist once so far and explained what each of us would like to work on. We will probably only see her once every two weeks or so. I really think this will help Vince as well as myself in all that we are dealing with, but I personally need more venting time than once every two weeks. We had to chuckle a bit at our appointment. When making the appointment, they assumed we wanted to be seen separately and I had to explain that we wanted to be seen together. It wasn’t until we were both in the office that they realized that our marriage wasn’t the issue and what was causing the problems. In fact, despite it all, as I always say, we get along great! We are both just having some trouble dealing with the stress that each of us have on both sides of the situation. Between caring for Vince, working full time, and worrying about our finances, I am just wiped out and tired. I try to take on as much as I can because Vince does all he can just to deal with the excruciating pain day after day. The therapist actually made a point that neuropathic pain is the worst chronic pain you can have. Vince just shook his head and agreed and I thought in my head how horrible this is. I just want it to go away!
 
I have been trying to take more time for myself although it is not easy for me to want to get away. I feel like I am gone so much during the week and I hate to leave Vince sitting home on the weekends too, just so I can have me time, although I know it is needed. I have been getting my nails done about once a month which takes about an hour or two so I don’t feel too guilty or worry too much while I am there. The place I go to get the manicure and pedicure is so relaxing and so nice. Granted, I hate spending an extra $30 a month to relax but it is worth it to clear my mind for a day.

Feeling a little dumb at the moment...

Okay, I admit it. I had no idea about sugar alcohol. I have not asked Vince about it yet, but I will have to see if he is aware of it. I googled it and I think I understand it to be a type of sugar that is absorbed less...? so now it seems that even sugar free has sugar in it? I am a little confused...I think we might just get the oreos from now on... :)

Sugar Free Does Not Equal Insulin Free

While at the grocery store recently, I picked up one of our more favorable sugar free cookies. They taste pretty good and I don’t even mind eating them myself. I thought this was another good way to show how sugar and carbs affect glucose levels and insulin usage. Although these cookies are sugar free, they will still affect Vince’s glucose level. Some sugar free foods are also carb free and some are not. If he were to eat 3 of these cookies and not take his insulin, his sugar would begin to rise as the carbohydrates digest and without insulin, it would stay elevated with no hope of coming back down. The difference between regular sugar cookies, and sugar free, is the rate in which his glucose would be rising. The pure sugar would raise his glucose faster than the carbohydrates will, but the outcome would be the same. This is the reason that pure sugar is given to a diabetic in a low reaction. Carbs alone would raise the persons glucose in this situation as well, but it wouldn’t happen quickly enough in an emergency situation. For this snack, per the label, for every 3 cookies consumed, there are 20g total carbohydrates. Taking into account Vince’s ratio of units of insulin-to-carbs, he would have to bolus his insulin before eating the cookies and would give himself about 3 units using his pump to counteract the sugar that the carbs will be digested into. So when it comes to sugar free foods, sugar free is a good, healthy option, but since it is not always carb free, it is still not an insulin free food. The only foods that you can truly eat without any insulin are zero sugar and zero carb options.

The Floyd's Are Getting Organized!

As we get situated in our new home, we have found new ways to be organized. One thing we thought would be helpful is a written schedule of when Vince’s insulin pump and sensor needs to be changed. Since this is something that I have to assist him with, it is important to stay on schedule, so that we can be sure the site changes are happening at times that I am at home with him. We change his insulin every other day and his CGM sensor every 6 days. The pump will retain the dates and data on when the changes occur and that is normally what we go by, however, there are times that we do not remember until late at night when I am already in bed, or early the next morning before I go to work. To avoid this, we have now begun to use a calendar as a reminder tool to keep us organized and it seems that, to have it written out to glance at quickly, it is helping us to be more organized and prepared for when the site changes are occurring. We are also noting when certain medications he uses need to be filled. A few of the medications cannot be on refill, so we have to physically drop them off each month when they are needed. It is very important not to forget to run to the pharmacy on that day, so writing this down as a reminder is a great help.

We have also added a dry erase board to help us with reminders. We can leave each other notes and notes for ourselves here. If you haven’t noticed, we aren’t too good at remembering things with all that we have going on, so I think these things will be very helpful.

Beep Beep

It’s 4AM once again and what do I hear??? Beeeeppppp!!!!!! Let me back up for a minute. It’s 1AM and I wake up looking for Vince. I go to the living room to find him and he is about to come to bed. Fast forward back to 4AM again. Beep Beep. Low predicted is on the screen with a number that I believe was around 85. He is clearly not hearing the alarm and seems to be too drowsy to find the pump hanging on his shirt and comprehend what it says. I clear the alarm and go back to sleep. What I believe was about 20 minutes later, the beeping starts again. I try to wake him “Your beeping!!!” No response other than a mumble. Stupid drowsiness at it’s best. This time it was saying 70 something. (I was half asleep lol) Again I clear it and go back to bed. I cannot seem to remember that his actual sugar is usually lower than what is shown on the screen in the middle of a drop. Sometime later, probably 20 minutes or so, I hear the beeps again. At this point it says he is in the 60’s. I get out of bed, turn on the light and get out his meter. He isn’t showing signs of being low so I test him to find a 45 on the screen. UGH! Not again! And the routine begins again. I grab the drink by his side and ask him if it is regular. He says yes. I take a sip to double check. I ask him if he feels low and he says nope. I checked to see if he had any active insulin. 0.9 units show, so we should be fine if he can get the entire cup of sweet tea down. I did ask him why he even had brought a regular drink to bed since he normally brings diet. He said just in case. Once he drank it all down, I told him I was going back to sleep and if he hears the beeping, to pleeeaaaassseeee get it so I don’t have to get up again since I have to get up for work soon. He feels bad. He promises he doesn’t hear the beeping. I believe it. I know on the rare occasion that he does hear it, he will attend to it. He often sleeps through it during the night and during his naps. Not a good thing… I lay back down in bed but I make sure to face his side since I know the cgm thinks he is still low and will be beeping in a few minutes and I will be annoyed if I have to roll over to clear it. Can you tell I get cranky when my sleep is interrupted? Haha I finally fall asleep and am awoken I think one more time before my alarm goes off for work. I really think that this is like training me for when and if we have a baby cause I don’t do well with being woken up all the time. The cranky switch turns on. Before I leave for work, I prick his finger and see a 113 on the screen. Looks like the ice tea worked just fine. I also know that at this point in the morning his sugar always starts rising on its own so it will go up a little more too. Around 10:00AM I talked to him again and asked him how his sugar was doing. The sensor showed 114 with one arrow going up. I am pretty sure his actual number is a little higher. Today is a sensor site change day, and usually by site change day, the sensor is off a little so that explains part of that. I also asked him why he had some active insulin at 4AM in the morning. He said he ate something around 12AM. He has been having a very hard time with his appetite lately from one of his neuropathy related medications. He isn’t always eating dinner and will eat something small later in the evening/night. He says he gets extremely sick to his stomach and just can’t eat sometimes. I told him, just eat when you can. We decided not to call the doctor about the lows. They will just tell him to stop eating at night and at this point, that is not an option. If he doesn’t eat at night, he will not be eating at all other than a small lunch on some days and that just isn’t enough, day after day. I am sure it will pass, so we have to struggle through. Vince feels bad that I have once again been up at night for him. We both have a “feeling bad about things” issue don’t we? Lol All we can hope for is that in the future, a louder alarm will be on the market and his drowsiness will subside. Until then, we have to both be on alert as much as we are able.

We Broke The Rules

It's 4AM. Beep Beep Beep. Are you kidding me?? I am starting the bad habit again of ignoring the CGM beeping at night since we have had so many false alarms when he is holding steady around 80-90. Nights are tough for Vince. They always have been. He runs high all the time during the night. It couldn't be controlled by his Lantus shot, no matter the dose, which is why he is back on the pump. (he loves the pump though now and won't go back to shots) The doctor will adjust his basal rates when he sees he is too high during the night hours, and then it will be good for awhile, and then he will start going to low. It's a bad cycle. Anyway, it's 4AM, beep beep, so I grunt and moan and I get up to look at the "false alarm" 58 is on the screen with a nice downward sloped line. Shoot. I turn on the light and Vince is full of sweat. He is alert but sweaty. I ask him if he feels low and he says yes. I don't even bother to check his finger stick. It's obvious the CGM is right. He has a drink on his nightstand and I asked him if it is regular and he says yes. He sits up and drinks it. I take a sip half way through just to be sure it is in fact regular. I checked his active insulin. Crap. 3.5 units still active. The soda won't do it this time. He must eat something. Oh no! We have a rule in the new place that we have worked hard to stick to. NO EATING OUTSIDE THE KITCHEN!! All drinks must have a lid (mostly for Vince since they tend to slip out of his numb pained hands) so I venture to the kitchen to find a clean snack. Hmm... A special k bar. That should work. I take it to him and he carefully eats. He is just as strict as I am with the new rule ;) He asks me for something else to eat and more drink. I agree since the bar only had about 19 carbs in it and with the 3.5 units still active, more snacks won't hurt. I say I agree since when he is low, sometimes the hunger takes over and he will eat a horse if he could. Just another beautiful side effect of being low. So I venture back to the kitchen for another clean snack. I return with a few tortilla chips on a plate and I ask Vince if he can eat them without making a mess. He says yes, and he did! Yay! He drinks some more Dr Pepper and says he is going to take a shower since he is drenched in sweat. I ask him if he is okay enough to take a shower by this point and he is. I lay back down, but leave the light on so he can see on his way back. I close my eyes and listen for any falls, screams, or anything that could happen. He returns to the bedroom all clean and lays back down. I don't know what time it is by this point but we are both able to finally go back to sleep. 

Moved with D along for the ride

So, I am finally back. It's been about a week or maybe more since I have posted. We moved into a bigger place and although it was literally around the corner, it was still a move and still annoying. We spent a month packing, had lots of awesome family members who offered to help and the move went very smooth. Been in the new place one week and loving it! Newer kitchen and bath along with new carpet feels great. The old apartment had it's issues but I realized when we moved out that I need to clean more. A lot of the "mess" was lint from the dryer related (a whole other story) but I admit, some was us just not cleaning enough. To tell you the truth, I am just too tired most of the time to clean! But the new place is nice so I will force myself to do it. Vince and I have also talked about a few things he can do to help around the house. Simple things, but things that I won't have to do myself nonetheless. I told him, if he doesn't feel up to it, then don't do it. There is always tomorrow. Speaking of Vince helping, he was a great help during the move. That morning, he began moving boxes with the rest of us. His brothers and I reminded him to slow down and take it easy but he didn't listen. His pain quickly became overwhelming and his steam ran out. My sister in law came outside and said he was in bad shape and needed me. I mumbled under my breath that I can't help but I went to him. He was screaming in pain. His other diabetic older brother asked if this happens all the time and I said yes. I got Vince his pain medicine and told him to take it easy and just sit there until they kicked in. The rest of the day he just walked around following people and grabbed a pillow here and there. When we were all done, his brothers told him he shouldn't have pushed himself so hard and he just explained that he couldn't let everyone move his stuff while he just watched. Of course they thought that was silly, but they understood. For the next few days, we tried to unpack, between taking naps. He slept most of the day for a day or two. Once I went back to work, he would unpack a box or two each day and ask me what else he could do to help. Like I said, he was awesome. I think he needed that. For his self esteem. We are working on that too. Anyway, the night before the move, Vince was hovering low and the CGM, Mr. beeps, lived up to his name once again, and kept me up most of the night. Vince was very drowsy. So much so that he didn't even remember talking to his one brother on the phone that night. The next morning, after a sleepless night for myself, I mentioned to him that his brother was coming to help move that day and he was confused. It was then that we discovered that between his low sugar and drowsy state from the meds, he wasn't aware of much that happened that night. Before the "movers" came, we went out to get the moving truck and to get me a cappuccino to try to get me through on no sleep. He faught off lows all day that day and the following days after the move. A few more nights full of beeps, but finally his body evened out and I got some sleep. It must have been all that energy and exercise his body isnt use to because he was running so low that he had to drink sugary drinks all day for a few days just to stay even. So we are now just trying to get organized and get back into our routine, which I missed during moving week, but we are almost back to normal. Normal for us that is...

Is That The Sun Coming Up?

It's 4:30AM and the beeping wakes me once again. Vince isn't responding to it and for some reason I cannot turn on the backlight. I get up and turn on the light and take a look. Low battery. Ugh. So I get up, get a new one and change it. Vince is completely out and not acting right. I try talking to him and he is just making noises. I know he isn't weak since the CGM is reading 175 but I also know he isn't acting right. I "threaten" him that if he doesn't talk to me, then I will test him. He doesn't budge. I start losing my temper since I am pretty sure he isn't low. I test him and he in fact is not low. I then try to wake him and yell at him telling him that if he doesn't talk to me, then I will call 911. He mumbles "I can't". Through more mumbling and yelling I realize his bedtime medicine has hit him hard that night and he is beyond drowsy. I am sure our neighbor in the bedroom below us loves the yelling by the way. So at this point, I yell to him to get comfortable. He knows what that means, but let me explain. When he is in pain or completely out of it from the meds, he tends to sleep with his legs bent up and his arms all over the place, or one leg off the bed. You get the idea. From this, he has fallen out of bed, so when I say get comfortable, that is exactly what I mean. He will grab the covers and adjust so he isn't moving around so much and won't fall out of bed. Once he is settled, my guilt takes over and I realize I was yelling at him again and he didn't do anything wrong. It's not his fault he is drowsy, is it? I have actually been doing really good on the yelling. My post about it, i think really really helped me, but I guess we all slip up sometimes. Knowing he is completely out of it, and won't feel me, I take him arm and hold him. I tell him I am sorry over and over. Then I roll over and get comfortable myself and try to go back to sleep. Then my thoughts get the best of me once again. Don't forget to put such and such on the grocery list. How am I ever going to get through the day on no sleep? Maybe I should get a cappuccino on the way to work. Or would a 5 hour energy work better? Is that the sun coming up? Oh no, I need sleep! That went on for a while until I finally fell asleep, but only to dream about Vince actually falling out of bed and being drowsy, haha. I can't get away from it, can I? As a side note, speaking of getting away, last weekend my sister in law took me out to lunch for a Mani and Pedi to celebrate my birthday and it was wonderful. I felt great and so relaxed! I am going to be getting mani's and pedi's regularly now!! Haha I feel guilty leaving Vince for my time alone but it is so worth it. I feel so much better, and in the end, I will have more patience for him.

1 or 2 ?

I have to say I think Type 1 Diabetes and Type 2 Diabetes should have completely different names. They are completely different diseases! Too many times do they get grouped together incorrectly. Can you reverse your diabetes with diet? Sure! I personally know people who have. But there is one problem. They have Type 2! Type 2 means your body is not using the insulin produced effectively. So if you cut back on the diet, there is less work for your body to do with the food and in turn it will help to correct the problem. Also if you lose weight, if that happens to be an issue, that can add to your success. Most of the time, there are all types of things Type 2's can do to help themselves. Now jump into the Type 1 world. A Type 1's pancreas is completely "broken" That darn thing is not producing any insulin for the body. So no matter how much you control your diet, when and how you eat, how much you weigh, yada yada yada, it is useless as far as any type of reversal what so ever.  The only thing that will help you is insulin. 
It is so aggravating to a Type 1 when you see commercials or magazine adds on how you can reverse your "Diabetes" with this or that diet. Do they bother to say which type? 1 or 2? Nope. How about when a Type 1 is overweight and and people just assume they should just loose weight to be healthier and fix their Diabetes? It all comes down to false advertising. People truly do not understand the difference. I know I didn't before I met Vince. Growing up, I had a distant relative who was Diabetic. I remember him saying that he really shouldn't have that dessert he wanted. But he decided to cheat and have a little bit. I thought, okay, he is Diabetic, he shouldn't have sweets and I guess I assumed he took insulin shots at one time or another. Then years later I met Vince and saw his Diabetes care and realized these are two completely different diseases and are managed differently as well. I suppose you are wondering why I am going on and on about this. Well, the other day when Vince and I were sitting in a waiting room at a doctors office, an advertisement came on their tv for Diabetes. A few minutes later they finally mentioned it was for Type 2. I was actually intrigued at first. It had to do with treatments, but as soon as I heard Type 2 I got annoyed and stopped listening. "Type 1's need help too!" I thought. Haha. Here's to hoping that advertising and such will be more clear and state Type 2 more often since most if not all of the advertising types of things you see are for Type 2.

How D Has Changed Me

How has Diabetes changed me? Considering I am not the one living with the disease, that is an odd question. I met Vince 9 years ago. I think back to that time. Did his Diabetes affect me then? Not really. He had his lows, but he felt them back then, and I helped to be sure he drank or ate something and that was about it. He was on syringes back then not the pump, so there wasn't the expenses to worry about. He also didn't have any complications, so it really didn't bother me much and I didn't think about it much. Slowly his complications became real and a few years later he became disabled. About the same time, he began using the pump and CGM sensor. Where in those years did it really start having an affect on me? Was it when he stopped feeling his lows and I saw him go unconscious? Or was it when he developed his Retinopathy and became mostly blind in his one eye and under went countless surgeries to save the rest of the eye and save his other eye. May it really started to affect me when I began to see the one I love most, struggle with pain 24/7. Not to mention the expenses incurred from the specialist doctor visits and the medication and pump supplies. Scary to think we pay as much as we do and that is with having good insurance. As those bills come in and sit on the desk and the pile get higher and higher it is stressful. We are young and on a fixed income. How will we ever get ahead? But again, how does this all affect me. My attitude and me as a person? I have noticed lately that I am becoming less patient with people that don't do the right thing in life. People that say rude or mean things to other people. I work in an office and let's just say I have no patience for office politics anymore. I go to work, sit there quietly and do my job. I have a lot on my mind so I don't always feel like chatting it up with everyone and their mother. If you don't like it, all well. I have more important things to worry about. I also don't have respect for people that don't have a care in the world about what they do or say. I used to be an easy going quiet shy person; and to a point I am still that way. But I feel like all of the stress of helping Vince to stay as healthy as humanly possible, and as comfortable as possible leaves me no patience to deal with the craziness of the world. Another thing that I have noticed is that I don't like to go out anymore by myself without Vince. Other than going to work, I want to be with him 24/7. I am pretty sure deep down, it's because I think one day something bad will happen to him. I am always having dreams at night that we are apart or I am not with him and I am just so upset that I lost him. I know not wanting to go out is not a depression issue because I am truly happy. Stressed but happy nonetheless. One thing that has become prevalent is my anxiety. Anxiety also runs in my family so I am not sure if it has developed as I am getting older because of genetics or if it is because of the stress of my daily life. Ether way, I don't like it. I don't like having to take a small pill when I am freaking out about nothing or I am feeling guilty about nothing just to feel normal. It's a low dose medication that I really don't take often, but I still don't like it. So, all that being said, I know I need to get out more to take a "time out" and as much as I like the idea, when it comes time to do it, I don't want to. I feel guilty for leaving Vince home, feel guilty for other people who take me out for having pity on me, and feel guilty for feeling guilty. See the problem? I guess, as I have said in the past, I am aware of my issues, so that is a very good thing. I just need to figure out a way to deal with them. 

Loving My Blog

I have been thinking a lot about my blog lately. It has served as a great tool to meet new people, vent my feelings, explain our crazy life to people who want to learn and understand, as well as a great place to keep a record of what is happening. I have also noticed that by blogging, I am learning a lot of what is going on in the D world. New "inventions" and new research and such. Although I am not sure a cure will not be found in Vince's lifetime, it is intersting to see the road to a possible cure one day. The more I am reading and talking to Vince, the more he is getting interested as well. Up until now, he just focused on the day to day care, which isn't a bad thing by far. But now when I tell him about an interesting fact or find that I come across, he is interested as well. He gets excited about new finds like his CGM. Although this was found before our blogging life, it is still an example of him getting "excited" about what new things are out there for him.
I glanced at my recent posts on the right hand side. It look like maybe we had a decent month in May? Not too many posts. Was this because there was a lot of medical happenings going on? I don't know, but it is interesting. I think about a few years down the line, and going back and reading what was happening to us in 2011. Where will we be then? Will we be better off? Or will Vince be in just as much pain and discomfort as he is today? What new worries will we or I have on our shoulders? I can predict a few but let's leave it to life and see what else falls in our laps.

Another Attempt

Here's to another attempt at trying to organize Vince's daily supplies that he leaves lying around the house. We have his main supply stash organized pretty well, but his supplies that he needs throughout the day are always scattered throughout the living room! I think this will work for now. Notice the test strip laying next to the bin? Ah Ha! They aren't all being put in that nice water bottle! Caught you Vince!

An Interesting Find

I thought I would share what I found this evening in the living room. At least they are all in one spot, instead of scattered throughout the house, right? Who am I kidding. They are all over. I found some in the car the other day! HaHa! Never mind the fact that by keeping bottled water in the house, he is drinking 300% more water than before!!! Go bottled water!!! LOL

Problem VS paranoia

Today Vince had an appointment with a pulminologist for his wheezing. I came home from work with plenty of time to get there on time. About 30 mins before leaving he asked me to help him put his socks and shoes on. As I was, I noticed his one toe was purple. I freaked out. It looked like his toe/foot was starting to die. A scary thing for a diabetic with neuropathy. I grabbed the phone and called his podiatrist and explained what I saw. As I was on hold waiting to see when they could see him, Vince remembered he stubbed his toe a day or two ago. I said well that looks awfully bad. You should have it checked anyway. We had about 30 minutes before we had to leave for the pulminologist appoint. Luckily the podiatrist is about 1/4 mile down the street from our house so we were able to jump in the car and race over. They took us right away. Luckily they know us and us and squeezed him in. The doctor took one look and said it seems okay but let's get an X-ray to be sure it's not broken. X-ray came back fine. Apparently he just bruised the heck out of the darn thing. That was almost the doctors exact words. Haha I asked the doctor how we would know the difference between a bruise and something worse and he said using there is swelling and more redness if an infection was killing the toe or foot but it is always better to get it checked just in case. He said that also happens more when there are circulation issues, but they check his circulation at his check ups and so far so good. So within 30 mins, we saw the doctor, got an X-ray, got the results, and we were sent on our way to the pulminologist. I thanked them perfusely for getting us in and out in time for the next appointment. At the pulminologist they did some breathing tests and took notes on Vince's history. I really liked that doctor. He said I don't believe it is asthma since it is more of a noisy wheezing than an actual shortness of breath, so I don't want to put you on more medicine than you are already on. I thanked him for that. He said it is probably combo of post nasal drip and the extra weight Vince has causing the symptoms. He gave Vince a simple machine to measure his breaths at home. He just blows into it once or twice a day and writes the results. After 6 weeks or so we will go back and talk about the findings. Overall, not a bad day for the docs! We have decided that me checking his feet every few days isn't enough. I told him he HAS to have me take a look every single day. I may forget so it's up to him to ask me. We probably would have noted his toe yesterday if I had checked them everyday since he can't see his feet in detail too well.

Shouldn't Chose Sleeping Over Beeping!

Here is the rundown of yet another morning in the Floyd household:
 
5:30AM: Beep Beep Beep Vince doesn’t seem to hear the pump going off and I chose to ignore the warning. I love my sleep, what can I say? Buzzzzz Buzzzzzz Vince is still not hearing it and now it is vibrating the bed so I am forced to take a look. 85 and steady. Back to sleep I go.
 
6:00AM: Beep Beep Beep Again Vince isn’t hearing it or responding to it. I take a look and still running pretty steady at around 79. I know I only have 45 mins of sleep left before work so I chose to ignore the warning sign once again and roll over and go back to dreamland.
 
6:40AM: Beep Beep Beep At this point, I only have 5 mins of sleep left so I decide to get up and check his sugar. I wait for the result 5 4 3 2 1 …. And I see 40 on the meter in front of me. I quickly try to wake him up. I tell him he is 40 and ask him if he feels low and he said no, he feels fine. I run to the kitchen, get him a cup of sweet tea and take it to him and tell him to gulp it quick since he has probably been low for a while; so he does and he assures me is feels okay and goes back to sleep.
 
7:30AM: I am about to leave for work so I check him again. Another poke of the poor fingers. 85 is the result. Ok, we are good. I wake him to tell him the result and I leave for work.
 
9:00AM: I call him to check on him and ask him to check his sugar to be sure it stayed up. He is already awake and says he will call me right back with the result.
 
9:05AM: He lets me know his number is 122. Perfect! Now I know he should be good, until the next check in around lunch time at least.

Emotionally Affected

Diabetes is not fair to relationships. That statement can mean so many things but I am speaking of the emotional side to relationships. I feel that I cannot be mad or upset with Vince for any extended period of time. This would be mostly when I am not with him, such as on a work day or when he is sleeping. Why am I afraid to stay annoyed or mad? Well, in my mind, the following examples arise. What if we go to sleep mad or upset or annoyed and something happens in his sleep and he doesn’t wake up? What if I am at work and I am annoyed at him and I don’t make sure it is resolved and something happens to him by the time I get home? This is pretty silly, but it is a true feeling inside me. Granted, we don’t fight too often and when we do, we are generally quick to resolve the situation, but the thought is still in the back of my mind. I suppose it goes back to one of my previous posts of feeling paranoid that something is always going to go wrong with him. I think having had a few bad episodes (or situations) in the past has made me feel this way. Thinking before some of those times, I don’t remembering being paranoid about these things.

A Day-In-The-Life Of A Diabetic's Wife - Sandy Style

I thought of doing this post as a way for people to get a glimpse into my daily routine to show people how busy our life is, but yet how scheduled it is. We do the same thing everyday to avoid any catastrophes or excess pain for Vince. I won't go into as much detail on the physical help or things I do for him (because of this neuropathy) because that is to hard to put into words. But just remember, a lot of what I help with (like helping his with his pump site change) is due to the retinopathy and neuropathy issues. Also, not mentioned, is during all of the phone calls, i am silently playing detective to see if he is low and not realizing it. I can almost always tell by the tone of his voice and how he acts. Doing this has made me aware of a problem situation time and time again. I won't hold back, so as crazy as it may look or sound, it is real for me.

A typical weekday:

6:45AM: Alarm goes off for me to get up for work. I get ready and check Vince's pump number most mornings. The only time I won't check his CGM is if we were watching it throughout the night, and from that, I can sometimes tell how his readings are by the time I wake up. I may or may not do a finger stick to confirm the reading and bolus him (if I haven't waken him by this point) for a correction. Of course I shove iced tea or soda down his throat if he is hovering on the low side. I make sure his cell phone is next to him as well as the house phone so that he can hear when I call in case he is sleeping. He has been known to sleep through the phone ringing.

9:30AM: I have been at work for an hour by this point and I am thinking about calling him but I know it's too early so I make myself wait. And yes, I think about it almost everyday at this time.

10:00-10:30AM: I make my first check in call of the day. Most of the time I wake him up. I ask him if his sugar is high or low and if either, what he has done to treat it. I tell him if i had to correct him before I left that morning and he was still sleeping, so that he is aware of what I did. I tell him I will call him later. By later, he knows when that will be.

12:00-1:00PM: I call Vince to check in for lunch. I ask him again how his sugar is and if he has eaten lunch yet. You might wonder why I keep asking such details. First, it is in case an emergency happens while I am away at work. This way I will know what his sugar has been doing all day and will be more of a help if a situation arises. Second, I have to admit, I am a paranoid wife, but with reason. But mostly the first reason.

2:00-3:00PM: I call Vince or he calls me before he lays down to take his nap for the afternoon. Again, we quickly go over how his sugar is running and I remind him (for my own piece of mind) to eat or drink something if we know a low could come on within the next few hours during his nap. I let him know if I am doing any errands on the way home or if I will be right home after work. If I will be home late, sometimes he will lay down a little later so he isn't sleeping to long.

5:40PM: I usually arrive home at this time from work and go to the bedroom to find him sleeping with the cat in bed and the tv on (to help him fall asleep) I turn off the tv and tell him I am home. He wakes up and we discuss dinner. After dinner, every other day, we do a site change for his insulin pump.

9:00PM: I normally go to bed around this time. I check to be sure his cell phone is fully charged and that the house phones are on the charges to be sure they are charging through the night. Cant have the phones going dead while I am at work! I remind him to take his medicine and to "be careful" whatever this means, I don't always know, but I feel better saying it and he understands. We have a lot of silent understanding of each other. While trying to fall asleep, my mind begins to run. All over the place. What did I need to write down on the grocery list? What was that I idea for that blog post? What are we doing tomorrow or this coming weekend? Anything and everything. I usually force myself to begin counting backwards from 100-1 to clear my mind and try to go to sleep. I start at 100, instead of say 10 or 20, because some nights, I need all the numbers I can get. It usually works and I can get to sleep. I mention this because I am pretty sure it is stress related ;)

12:00AM-6:45AM: This is normally when Vince is in bed with me. We may or may not have the pump beeping at us through the night. It all depends on how his readings are. Whichever one of us hears it first will take a look and take action if needed. I have to admit, he has gotten much better at waking up and hearing it. The darn thing isn't loud enough...Also, depending on his pain, he may shake or jerk his body around during sleep, but lately it hasn't been to bad.

A typical Weekend:

Saturday is our errand day. We normally wake up and go grocery shopping and run any other errands that need to be done. Then we come home and relax. That is the gist of it, although, of course weekends tend to vary. All of the sugar and pump checking continue throughout the day, just with less phone calls obviously than during the week. Sunday morning, I have to refill his weekly pill box as it is emptied by this point. If I get lazy, then he will just get the pills from the supply drawer, but I don't always like that because he could forget some or drop some and not realize it since he doesn't have a lot of feeling in his hands (other than pain anyway) We try to stay home and relax on Sundays as well, as long as there isn't anything special going on. I try to get things done around the house, although I have to admit, even getting off the couch to do the wash or any cleaning is too tiring some of the time. (mostly a mental tired feeling) I just try to relax as much as possible on the weekends, in order to get ready for a new week.

A Great Tip!

While reading someone's blog, I came across a tip that I thought would be very useful for Vince (and I when I am nursing him back from an episode). Of course I have no memory lately so I cannot remember where I read this so I can't give anyone credit for the great tip. Anyway, they suggested buying a powdered form of glucose. I knew it came in tablet, liquid and gel form, but not powder form. I will be looking for this tomorrow at the store! They suggested to add the powder to boost a glass of juice or sweetened tea in the even of a low episode. The point behind doing this is that, a lot of times, in Vince's case, he doesn't want to drink an entire cup or even two, of juice or soda. If you boost it with the glucose powder then you will get more sugar in a smaller amount of liquid that you have to consume! I also think this would come in handy, in the event Vince is not able to drink completely on his own. If I am pouring the drink in his mouth or desperately trying to get him to drink while he is "out of it", he won't have to force so much liquid down to do the job! He is also dealing with an appitite issue lately as a side effect from some medicine. Sometimes, his appetite is so bad that it makes his nausea come and go and the thought of drinking a cup or two of sugar is not what he would call enjoyable. If he used the powder to boost the drink, he wouldn't have to consume so much! Great tip that we will definatley use!

To Carb or Not To Carb

I am not a fan of the rule “must have fast acting sugar along with slow acting carbs” for a low reaction. In the past, before CGM days, I had called the paramedics a few times for bad lows when Vince went unconscious. They insisted he have slow acting carbs in addition to fast acting carbs. If we refused transport to the hospital, which we did because once his sugar was up he was fine of course, they require to see you consume the slow carbs before they leave. Also, I put this in quotes because everyone responds to diabetic care in a different way. I believe paramedics are trained in immediate diabetic care, not the long term care, which comes into play when over correcting. In Vince, most of the time this rule results in over correcting and a very high number hours later that he is chasing with a bolus to get back down. Normally, especially with his CGM tracking his numbers, if he is low, he will have a cup or two of soda or juice to bring up his low. This normally brings it up to a decent number and he is good to go. One of the only times he eats carbs with the sugar, such as a sandwich or crackers of some type, is if the low is near mealtime and he is going to be eating anyway, or if he is active, say at the beach and is sweating a lot.
Last night (early morning) his CGM starting beeping low. He tested and he was running about 50. I got him a cup and a half of sweetened iced tea, he gulped that down, and we went back to bed. I woke up for work and realized he was not in bed. He said he got up earlier and was still low so he had a “carb filled” snack/breakfast to boost him up. He knew this was more than he would need so he gave himself a small bolus for the food. When I left for work, he still had active insulin in his system and it had been a few hours since he ate. This made me nervous, coming off a low, so I reminded him I would call him in a few hours to be sure he was okay. When I checked in with him later in the morning, he was 165. Not bad for all the correcting and eating going on.
Just a reminder to us to pay close attention to details and always treat each situation as needed. A one-time fix such as, “always eat xxx food when your low” doesn’t work.

An Interesting Find Brings More Questions

I just looked up Joslin Diabetes research thanks to Michael's comment. It is a very interesting site. They even have a section where people that have lived 25 or more years with diabetes can share their story. The first one I happened to read was a person that was diagnosed in 1949! Yes, 1949. They explained that they do not have any complications. How is that possible? You cannot tell me that the care back then was great. You had to boil your needles for petes sake! You can't tell me that if they HAD tested A1C which I highly doubt, that it would have been in an acceptable range. So going back to my previous post, and listing the reasons why we think vince MAY have complications, doesn't make sense. Even if he didn't see an Endo as a child and may not have had the lowest A1C's as a child, that still makes zero sense. It is driving me crazy. I hope they find more research and answers, but better yet, a cure to neuropathy; the one complication that has completely disabled him.

A Special Case?

Last night I took some time to really search for other Type 3 blogs; people who care for a diabetic. As usual, most were parents of a diabetic. I did come across one or two that were about their significant other and the struggles they face while helping to care for their diabetic partners and how they dealt with the constant diabetes care. What I have yet to find is another spouse that is around my age that deals with the types of things I deal with. I say around our age because that plays a big part. Sure older people have complications. That is "considered the norm" But it seems that Vince and I are more special than I thought. Special how? Well, just to start with, I have yet to find in all of the people I have connected with, someone being diagnosed as young as Vince. He was diagnosed at 6 months old. Very very rare. I have met people whose child was diagnosed as a baby, but no one has "beaten" his 6 month mark. Even all of his doctors are amazed still to this day when we remind them how old he was when he was diagnosed. On to his complications. I have not connected with anyone that is around our age (late 20s - early 30s) that has as many complications as Vince does. Why does he have so many complications? We ask ourselves this from time to time. He looks back to his care as a child. He saw his pediatrician for his diabetic care until around the age of 16. That is probably one factor. Pediatricians are not trained to handle the specifics of Diabetes. Then he began seeing an Endocrinologist around age 17 or so. He began to use his first Minimed insulin pump.  After a year or so, he had to go back to injections because the pump was causing infections on and under his skin. He stayed on shots for a few years after. As with any child growing up with diabetes, he had a few years in his teen/young adult life that he wasn't as diligent with his care as he should have been. But these years were short and he soon took charge, all the while, his A1C's remained near what they are today; 6-7%. So all of that being said, we are left with the same question and no answer: why does he have so many complications? His complications began in his mid 20s and became more prevalent by 30. I am sure a few of the factors I have mentioned have contributed, but I refuse to believe that they are the sole reason he is so sick today. There is a small part of me that believes he may just be "one in a million" with this disease. Diagnosed so young and dealing with so many serious complications so young. I just have yet to find another story even similar to ours. Yes, it is more than comforting to connect with the DOC. It has done me wonders. But at the end of the day I am still left frustrated that once again, we seem to be in this category all alone. 

Minute by Minute, Hour by Hour

I have a great example of no rhyme or reason when it comes to managing Diabetes. In the last 24-48 hours, Vince’s sugars have been AWESOME! He has been running between 80 and 120 for 12 hour stretches. Last night before I went to bed, I took a look at his pump. I knew he was running on the lower side and wanted to make sure he wasn’t trending too low before I went to sleep. I asked him what he has been doing different when I saw the great numbers again. The only thing we could think that even might have caused the good numbers is that he was not eating greasy, fatty foods. These food can cause high numbers because of the oils. But I couldn’t even say that was it completely that because there was one meal in there that was greasy. So we still didn’t have an answer to the good readings, but as normal, we just took the good and went about our business. This morning before work, I checked his pump and he read 285! I woke him up to test and bolus for a correction. I asked him if he ate anything before bed and he said no. He said he was that high when he laid down and he took a correction. Apparently, it didn’t lower it any. I am confident that it will come back down in a few hours. It always does! But why were his numbers so great and then all the sudden so bad? He does the same thing pretty much every day so we can’t relate it to activity. Also, his pain was about the same for the last few days so it’s probably not related to pain or stress. Sometimes, there is just no explanation with the managing of sugar levels when it comes to Diabetes. You never know what you will get day to day, which is what causes a lot of the stress. No matter how much you “manage” it, how much you are on top of it hour to hour, minute to minute, you will still have periods that you can’t control, good and bad and that is the scary part. A good situation can turn bad in minutes.

Not an easy one to post but here goes...

I realized something recently. Maybe I didn't just realize it. Maybe I am just admitting it to myself. I am angry. Angry at our stresses. I am taking it out on Vince. I hate this. I am always yelling at him. Yelling at him to "quick, sit down!" when he his legs are shaky and weak and he is about to fall. Yelling at him to "just stop! why do you keep trying when your shaking that bad?" when he is trying to type on the computer and his hands are shaking uncontrollably. Why am I yelling at him?? I am not mad at him. I don't mean to yell. But I do. I hate myself for it. I have been trying to stop myself as much as I can. I  realize that I am mad at his medical problems, not him. It's almost as if when I see him physically hurting or being limited physically, it makes me mad that it has happened and this is how it comes out.
So now I am mad at Neuropathy and I am mad at myself for taking it out on him. I suppose I don't yell as much as I think, or else I think our marriage wouldn't be so strong. But I still feel so guilty. He asks me, begs me, all the time to just stop yelling. I feel horrible. I need to find a better way to cope and deal because it's just not fair to him. I feel like such a horrible wife. Even as I write this out. Writing this down on "paper" I am feeling more guilty with every word I type. Maybe I needed to write it down. Maybe it will help me come to realization within myself that it's not right and not fair to yell through my frustrations. I hope I am more successful in trying to be more calm, because he doesn't deserve this. Any of it; the neuropathy, diabetes, or a mad wife.
When I talk to him about it, he says he completely understands why I yell and get frustrated. He has even said he doesn't know how I work 40 hours a week and take care of him and the house. He says he understands why I am frustrated and yell, he just wishes I wouldn't take it out on him, even though he knows I don't mean to. As I am trying to think of a way to end this post, and I am questioning if I should actually post it to my blog. Do I want everyone to know that I am angry and I yell sometimes? No. I don't. But I think if I post it, then maybe it will become more real in my mind, and maybe it will help me to stop and have more patience. Because the only one I am hurting by not controlling my frustrations is Vince. He hurts enough without that. So I am posting this for him. To help me be a better, more patient wife to him and for him because I love him dearly...

I would like to hear this everyday!

I went to the bedroom and awoke Vince from his nap. As we started to walk through the house, he stopped and I turned around. He smiled and said, "Oh I feel good!" I said "you do?" He said "yeah, my legs feel great"...it makes me wonder why he can't feel that great more often. What triggers the good and the bad? Well, we take what we can get, so it's a good day for him :)

Decent Days

My last post was so depressing. It was the morning I had. Waking up to that is depressing. But within a few hours I got busy in my work and I soon "forgot" about it. Okay, more like, I shoved it in the way back of my mind. So on to something more cheery, Vince has been feeling decent with the summer weather we have had! He is still decreasing the Lyrica slowly and it hasn't seemed to make a difference, so on we will go with that plan and see how he does by the time we hit zero. One less medication, seven whole pills less in his daily mix, will be great if it works! Oh and one more thing, on a side note, his sugars have been decent during the night. He is a big night time high person and every time the doctor tries to adjust his basal settings for the night time highs, he goes low. It seems for the moment at least, they got the basal right and he has been running decent at night. I hope I don't jinx it by writing this! His CGM actually has beeping a lot through the night since his sugar has been hovering around 80-100 but i dont mind waking up to that sound, knowing he okay. They have his low alarm set at 80-100 since he doesn't feel his lows, and that setting will give him enough time to react. So dealing with some beeping but otherwise, having some decent days, for now. Hoping for a great weekend. Our nieces birthdays are being celebrated on Sunday. I am hoping that Vince is still feeling decent enough to go. He missed seeing them last time because he wasnt feeling good. I am sure he will be able to go this time!

The Reoccurring Dream, No, Nightmare

I awoke with a very frightening, sad, and scared feeling this morning. I have these mornings every now and then. I am wondering if it is just me or if the rest of the DOC experiences this. It is the dream of the diabetic in your life dying. My dreams are normally vague and all over the place so there isn’t a lot of detail. I just remember crying nonstop because Vince was slowly dying. He looked fine and okay, but I knew that he was dying. Soon I wasn’t going to have him anymore. That was the extent of the actual dream, but it left me with a horrible feeling this morning as I was getting ready for work. Vince was actually awake and I told him about. He chuckled and said as he always does, “I’m not going anywhere.” I hugged him a million times before leaving for work. He just kept telling me that he wasn’t going anywhere. On the drive to work, I was still thinking about the dream. What would happen if I lost him? Who would hold me and comfort me? He is the one that does that. How would I ever go on? How would I return home and live in our house with our cat? Everything last thing in my life is around him and us. What would happen if he was gone one day? Then I have to remind myself to snap out of it. He is sick, but healthy. He sees the doctors regularly and has his entire body and organs checked each time. We are doing everything possible to keep him as healthy as we can. He’s not dying, right? Seeing him sick day after day, it must be twisted in the back of my mind that he is slowly dying. It’s HORRIBLE! I know he isn’t! I just don’t know what I would do without him.

Welcoming Summer but not the heat

This holiday weekend has been decent! Saturday morning, I actually took some time for myself and got my hair washed and cut. I must have looked stressed cause I swear the hairdresser gave me some extra massaging time. Ahhh it felt so nice! After my hair cut I ran home to give Vince his pain pills, which I forgot before leaving, and then went back out to have lunch with my friends. As always they asked how the hubby is doing. They kind of already know the answer by now, but it's nice they ask. It shows they care. I gave the same answer I normally give people nowadays: "eh, hanging in there" and I shrug with a half smile. What else can I say? So back to our great weekend, when I got home, we went grocery shopping and Vince felt pretty good! Must be that 90 degree weather we have had. I hate the heat but I am liking it more and more nowadays. Today, we both woke up fairly early and headed to the movies. We are such old people. We don't like crowds and can't afford much in the way of movie tickets so we prefer Saturday or Sunday mornings. Plus, Vince has a few favorite spots to sit in the theatre. Less of a chance to get kicked by the person behind us and more of a chance to get an end seat in the front half of the theatre. I must add at this point that AMC theatres only have coke products, no pepsi. Vince and I both hate diet coke. We are diet pepsi fans, so we have decided that when we go to a movie, he is allowed to treat himself to a nice regular coke and take an extra bolus for it. So we did just that. Turns out he did good because by the time he got done with his movie snacks and soda, he was running 80! During the movie, I asked Vince if he wanted to go shopping afterwards and we decided we would as long as he feels up to it. Guess what?! He did! Shopping at target and walmart two days in a row! It has been great! Pain not the best but definitely not the worst! His CGM was beeping through both stores as he was on the verge of going low, but who can complain about a low after all that junk food! Go Vince for estimating correctly!
One other thing Vince has decided to try is slowly weaning himself down on the one type of medication he has been on; Lyrica. Now before anyone slaps our hands for self dosing, I must say that I am extremely strict 99% of the time in following doctors orders. However, Vince has been prescribed this medication by three doctors over the past 5 years, all prescribing different doses. He is beginning to see which of his many medications are helping and which ones may not be. Since Lyrica has some very strong side effects, such as drowsiness (or zombiness as we call it) and weight gain, he feels he rather not take it if it's not helping. Also, the fact that his current dose is actually more than the manufacture recommended, is also adding to his decision. So together we thought about how he has been weaned on to the medication in the past and we decide to slowly wean him back down. When I say slowly, I mean it. Like over the next few weeks. You may ask why we are not consulting the doctor on this decision. Well, we will, but just a little after the fact. You see, when Vince's doctors see him in so much pain, all they want to do is shove medication at him. Yes, 95% of it is needed, but he is just to the point with all this that he feels he has seen enough doctors and gotten enough opinions that it's time he has a say in the treatment. Heck, we feel like we know more than them sometimes at this point, even though we know at the end of the day we don't. But yes, that is the plan, so we will see how it goes. Needless to say, if there is any change in his pain, then he will simply wean back up to his current dose.
I think that sums up our weekend! One more day of relaxation!