Regular or Diet

I have talked about this topic before and it seems that all diabetics and caregivers of diabetics have the same frustration. Its the common misconception about diabetics that they are not allowed to eat foods that contain sugar. As I have stated, diabetics can have sugar, as long as they keep portion control in mind. Here is a good way to explain it. There is no such thing as a diabetic diet these days. Diabetics are urged to have a healthy diet including fruits, veggies, and whole grains. Sound familiar? Yes, this is the healthy diet that is recommended for all people, diabetic or not. So can a diabetic have a small bowl of ice cream or a slice of cake? Yes, as long as they have the insulin to cover the extra carbs. And just like all other people, they shouldn't indulge in the sweets food group to often while trying to maintain a healthy diet. As far as my husband Vince goes, he isn't a huge cake or ice cream guy as it is, but if he is offered these desserts, he will normally politely decline and say no thank you because he knows the myth that is out there and chooses to try and avoid the entire situation. You may wonder why after all of the information I have just given, why diabetics drink diet soda or diet sports drinks. This is because the more sugar in a food or drink, the more carbs. When you consume extra carbs, you have to take extra insulin. This is okay if you are treating yourself once in a while, but not as an everyday meal or beverage habit. You would use way to much insulin and would be prone to a lot more highs and lows in blood sugar control.  Insulin also causes weight gain so it's best to avoid having to use extra when possible.
I have even find myself preferring a diet drink or sugar free food over the regular sweetened kind. I am realizing these foods are filled with empty calories and a lot of extra sugar that we shouldn't be consuming, even for non diabetics.

Patience and Communication

I recently started realizing how lucky I am. I have been reading a lot online about having a diabetic in the family and how the family members deal with it. How they deal with all of the mood swings, high sugars and low, and care that goes into being a diabetic. I even read how one lady was frustrated because her husband wasn’t open with her about his everyday care and numbers. It made her frustrated and worried, not knowing the details, and not knowing if he was okay that day. I can’t imagine this. Vince and I are the complete opposite. We tell each other everything that is going on in our lives. He allows me to be the nosiest wife in the world. I can tell you his numbers from the time he wakes up, to the time he goes to bed, and even through the night. I can usually tell the doctors his laundry list of medications quicker than he can open his mouth. He allows me to be so involved that his doctors all know me by name and let me tell you, this makes his care so much easier. They know me just as well as they know him, so I can always stop by their office to pick up a prescription or supplies for him without 20 questions as to who I am and why I am there. I can’t imagine a world where he wouldn’t clue me in on what is going on and allow me to help him. Maybe it is because he has other disabilities that cause him to need assistance with? Such as poor vision to see his pump display if he doesn’t have his glasses handy. Or his chronic pain that prevents him from doing a lot of the everyday care? I look back to before his complications started. I was pretty involved from the beginning, however, I do think I am more so now, than then. Even a few of Vince’s doctors comment on how easy going he is, and how “well behaved” of a diabetic he is. I guess a lot of diabetics have problems with keeping an even mood, with everything going on with the chemicals inside their bodies, but Vince is pretty easy going. He knows what needs to be done will be done and doesn’t give it much thought. This is probably one of the upsides of him being diagnosed at such a young age. He has never known anything different. I am just so lucky to have a patient and understanding husband. It makes a difficult world a little bit easier.

Genius Revel

It's times like this that I love Vince's Minimed Revel pump. With all I do for Vince's care, the one thing I am not to good at is the actual calculations of bolus doses for carbs and corrections. I am so bad at math, so that is all up to him and since he is awesome at math and so used to doing it with 31 years experience ;) I leave it up to him. Fortunately, his pump will automatically calculate the correction doses based on the finger stick reading so this has been great for me on mornings like today. His sensor reading on the pump showed 220 and I know he was hovering around that during the night so I knew he needed to bolus before I went to work. I didn't have the time to wake him from his drowsy medicated sleep, and wait for him to finally open his eyes to fiddle with the tiny strips and try to read the tiny printing on the pump so I whispered to him that I was going to give him some insulin to bring him down. I pricked his finger and got a reading of 240, so the sensor wasn't off by to much this time (yay!) the reading goes automatically to his pump and calculates the correction, so no math is needed from me. I just press the ACT button and it knows what to do. I told him I gave him a correction and he nodded his head so I knew all was good. I will give him a call in about an hour to be sure the sugar is coming down. Not to bad of a morning thanks to the awesome Revel!

Doing Our Best

When it comes to our eating habits, Vince and I need a lot of work to say the least. When it comes to emotional eating, we are pros. Add in a horrible cook (me) and you have a lot of eating out and junky meals going on. The only think we are decent at is keeping junk food out of the house. Out of sight, out of mind. We have decided to make an appointment with Vince's Endocrinologist's nutritionist. We have met with her before for a brush up on carb counting and for pump training and we absolutely love her and how she helped us learn Vince's pump. She has never made Vince or I feel dumb or feel down on ourselves, like some nutritionists can make you feel. I am hoping we can figure out how to make healthy quick meals so we stop eating out so much and so we can get some weight loss going on. That plus keeping up with the gym and we should be in good shape :-)

A Visual of our Daily Routine

One shelf in our refrigerater is desginated to insulin vials and insulin pens

This is Vince's "black bag" that he carries with him anywhere he goes with his meter, supplies, medication, and glucose tablets

This is a picture of all of the supplies needed for one pump and sensor site change 

Vince's weekly medication box

All of Vince's medication and vitamins that he takes daily along with spare glucose tablets, glucagon, and prescription information

Our site change supply bin

Spare meters and spare CareLink

Spare misc supplies

24/7, 365 Days A Year

Diabetic care is a 24/7 job where you don't get breaks. As Vince's wife, I am always watching him, making sure his lows aren't to low and his highs aren't to high. Making sure to wake him up from naps to take his meds for his nerve pain. Pricking his finger in his sleep or asking him to check his sugar if I get nervous that a low is coming on. Wheeling and dealing with him in a low episode to get him to just take one more spoonful of yogurt or to take one more sip of soda while his body and mind is fighting him. Doing the cleaning and cooking while he does what he can to control his pain and stay comfortable. What happens when he or I get sick? The marathon must go on. If he gets a virus, that just means double the finger sticks and double the stress on the both of us to make sure he is keeping down his food and keeping his blood sugar under control. If I get sick and can't get off the couch, then dinner ends up to be take out. (after he offers to try cook but we both know that isn't the best idea) His care doesn't stop if we are feeling under the weather. He still needs help putting his socks on And helping him around the house when his legs aren't steady. Assistance is still needed when changing his infusion set and sensor on his pump. Diabetes is unfair to him and everyone around him.

Hatred for an evil disease caused by an evil disease

I hate Diabetic Neuropathy. Well that is understatement. I hate everything about it. I hate it even more than diabetes itself if that can even makes sense. I hate what it does and how it makes my poor husband feel. I hate that he has to take so many pills that he can't even function. I hate that even with all of the medication, he is still in pain. I hate that it makes his legs so weak that he can barely walk sometimes. I hate that it drains him emotionally and wears him down. I hate that it cripples him sometimes to the point that he can't can't out of bed. I hate that when he is in pain, he is not his normal happy self that makes me laugh. I hate that I have to sit by and watch and know that I am not able to do anything for him. What unfair disease caused by an unfair disease, diabetes.

A Tough Goodnight

I cannot explain why, but once in a blue moon, no matter what Vince does, he cannot keep his blood sugar up. We had a day like that yesterday. When I woke up for work, he was in the 60’s. I had him drink some soda to boost him up a little. Throughout the entire day, he stayed 70-80. You may think that doesn’t sound like a bad thing, and to a point, it’s not. However, when he eats, his sugar should peak higher and after the meal and it should come back down. This is how a normal pancreas works, so a diabetic has to try to mimic this 24/7. This was not happening yesterday. We even had pizza for dinner and he stayed hovering at 70. A few hours after dinner, we looked to see how much active insulin his pump showed was in his system and there was about 5 units still active. Vince got some fruit and iced tea and waited another hour. His sugar was still 70. He took some more iced tea and waited some more. It still stayed 70. This was so frustrating. It was getting late and I had to go to bed. I was actually scared to go to sleep and leave Vince alone. He kept on drinking his iced tea in hopes his sugar would raise. Eventually, he begged me to go to bed and get some rest and promised me he would be careful and would be okay. So I laid down in bed and tried so hard not to be nervous, but didn’t have much luck. About 30 minutes later, I went back out to the living room to see how he was doing, as he was still the same. I finally went back to bed and got about 2 hours sleep and woke up again to see if he was okay. This time, his sugar finally raised to 140. Finally! What a relief. I could finally go get some rest without worrying. We don’t know why, but this happens sometimes. It is actually a little funny, because I had just read that day on someone’s blog that they experienced the same exact episode recently. It doesn’t happen to Vince too often, but when it does, it is so frustrating and stressful.

Beeping: The Good and The Bad

As I have mentioned, Vince wears a continuous glucose monitor that tracks his blood sugar levels and takes readings every 3 minutes. If his blood sugar rises or falls to quickly, an alarm will ring to let us know. This is a great tool for him, as he no longer feels his lows, and can get in a dangerous situation very quickly. Finger sticks do not give a diabetic the entire picture of what their blood sugars are doing throughout the day.
 
One of the most important times of the day to listen for the monitor is when we are sleeping. Of course since Vince is so drowsy from his medication, he tends to sleep very sound and does not wake up to easily, so I listen for the alarm in case it sounds. If the alarm goes off in the middle of the night, and says his sugar is dropping, I will take a look at the monitor to see what is going on. If the sugar looks to be “hovering” as we like to call it, around a low number, but is not dipping to low, I will clear the alarm and go back to sleep. Also, if I know he ate or drank something before going to bed, and I know his sugar will rise again, I tend to ignore it. The alarm will sound about every 15 minutes until his sugar rises above the point of normal. I normally just wake up each time and clear it out and continue on sleeping. This can be very annoying and there are many nights that the alarms beeps for hours. Although this is a little inconvenient, we much rather have to deal with the alarm going off, rather than not have the monitor, and have his sugar dip down to low to fast and not have any warning before an emergency happens. One thing I do need to be more cautious with, is if his sugar is dropping slowly, I should probably not go back to sleep and ignore it, even if it isn’t going dangerously low. It would be better safe than sorry to get him a drink or yogurt to boost him up. This is a very bad habit that I am working on J A lot of people hate the idea of this monitor and having it beep sometimes all night, but with what we have experienced in the past, we much rather put up with the beeping day and night, then have Vince get in a bad situation. He loves the monitor as it gives himself piece of mind when he is at home alone during the day without me there to watch him. Of course the monitor isn’t perfect and he still has episodes that it doesn’t catch, but we would never go back to the time when he didn’t have it. It is a great thing.

Being the One in Charge

Vince sees many different specialists to take care of his diabetes health and its complications in addition to his primary family doctor. He sees an Endocrinologist (diabetes specialist), Podiatrist, Ophthalmologist (retina specialist), Pain Management, and a Neurologist. I have learned through the years when accompanying Vince to his doctor appointments, that we need to be the ones in charge of his treatment, not the doctors. When dealing with multiple specialists to treat all of the aspects of a disease you have, it is important to be sure the doctors communicate with each other about your treatment since one thing affects
another.
One thing we have also found out the hard way, is to always get a second opinion. Vince sees his pain management doctor to treat his peripheral neuropathy. He has seen two pain management doctors and two neurologists, and they did not all know how to treat his diabetic nerve pain. The first neurologist actually took one look at him and said he couldn’t help him and that he needed to go to pain management. Not knowing any better, this is what we did. A few years into treatment with the second pain management doctor, we hit a brick wall and nothing was working for his pain. His doctor finally suggested we try another neurologist in hopes they will have an idea on how to treat him. As luck had it, I picked a name from the insurance list, and we found his current neurologist. He was very nice and understanding and admitted that very few doctors know how to treat PN but he does. I asked dozens of questions, even ones I knew the answer to, and wanted to be sure we found a good doctor this time. We have seen him twice now, and so far so good. He is even able to reach after hours and doesn’t make you feel like you are bothering him. The new medicine he prescribed, slow as it may be, seems to be starting to affect on his pain and we have seen slight improvement. There is a long ways to go, but we feel confident that this doctor along with the pain management doctor will finally get him some relief.
Another thing that is very convenient is that our family doctor takes care of all blood work that is needed for the specialists. Some family doctors do not do this and you are referred to a special testing facility. Any blood work that needs to be done, can be done right in their office, and the results are sent directly over to the specialist. This also helps to facilitate everything to be sure tests are done in time for each appointment. Knowing how often to see each specialist and being in charge of your own health care is a great help in getting the best out of your physicians.

Playing Their Game

Anyone who has applied for social security disability knows all too well the game you have to play with our government to get the benefits that are there for you. Before we applied, we heard countless horror stories of people saying everyone is denied the first time around and that they waited 2-3 years before they got approved. Of course we didn’t have this kind of time to wait for the income (who does?) so we tried our best to do everything we could each step along the way. We initially filled at the local social security office and spent about 3 hours filling out the detailed paperwork they ask you to bring with you. We thought for sure that we had done a good job with all of Vince’s records and would be one of the few people that get approved the first time around. Unfortunately, about 4 months later, we got notice that Vince was denied benefits. Knowing the game from talking to other people, we got a lawyer right away. Without a lawyer, it can be a tough fight, if not impossible to win your case. He filed the appeal and said there is about a 9-10 month waiting period at that time to get a court date for our hearing. We almost fell out of our chairs. How would we ever make it that long with no second income? He instructed us to call him about any medical changes and new prescriptions or doctors so that he would have the most up to date information on file for the hearing. About 8 months later we were notified that our hearing had been scheduled about a month out. This was a relief to finally have a date. A date that we had been waiting for, for such a long time. About a week before the hearing, we met with the lawyer so he could prep us and let us know what will be happening that day and what to expect. The day before the hearing date, we got a call from the lawyer stating the judge already took a look at Vince’s case and records and is going to approve his benefits without needing to see him at the hearing. We were shocked! We had no idea this could even happen. We thought for sure that we would have to go before the judge to explain our case. We were told it would take about 4-6 weeks for the payments to begin. Looking back, from the time we first applied, to the time Vince was approved, it was almost exactly one year. I think we were very lucky in comparison to the time it has taken others to go through the process and we are glad we are finally finished and can begin to move forward.

Unable to Rest

I will never forget that night, about 5 years ago. It was the most traumatic event I have ever had as the wife of a Type 1 Diabetic. It was about 2:00am and I awoke to Vince shaking in the bed. I repeatedly asked him if he was okay. When he didn't respond, I leaped out of bed, flicked on the light switch and realized he was unconscious. I raced to my cell phone and punched in 
9-1-1. The operator came on the line and asked, "what is your emergency?" I explained that my husband (boyfriend at the time) was unconscious and was having a weak reaction and explained that his body was "twitching". They said he is probably having a seizure from the low blood sugar and asked me if he was breathing. I looked at his chest and said yes. They said the ambulance is on the way and to let them know if he stops breathing. All I remember is saying over and over, he is shaking! He is shaking! He had never acted like this in a low episode, let alone been unconscious. I was so scared. I hung up with the operating and ran to open the front door and let the EMT's know where to go. (our apartment isn't the easiest to find) when I saw them coming I yelled, please hurry! They came in and put an iv in Vince's arm and said once they give him glucose he will wake up. They seemed to move so slow. I wanted to yell, hurry up! Soon after they got the iv in, Vince started to wake up and he stopped shaking. He looked around and the EMT said hi to him and told him what was happening. They asked me to make him a sandwich and get him something to drink. Soon after he was completely back to normal. After the paramedics left, I told him how his body was twitching and he said that can happen, and it is nothing to worry about. I was so freaked out and upset. I had asked the doctor for a prescription for a glucagon kit and looking back, I wondered why the doctor never gave this to us in the first place. Vince explained to me that this was a very rare episode, a "once in a lifetime" type of situation and that it is unlikely that he will go completely unconscious again.
From that day forward, I literally slept with one eye open. Any move Vince made in his sleep, I would wake right up and check to be sure he was okay. I would nudge him multiple times a night, and ask "are you okay?". I was so terrified of the episode repeating itself. To this day, I find myself nervous when he takes naps. If I notice him not snoring at night, I sit up and watch to be sure his chest is rising. Since he got his monitor, I have calmed down a lot more, but it is always in the back of my mind to check on him and make sure he is okay when he is sleeping.

The Results

Every three months Vince sees his endocrinologist for a quarterly check up. They do blood work to check his kidney, liver, blood pressure, cholesterol, and of course his A1C. His A1C number tells the doctor what the average blood sugar has been over the past 2-3 months. With this information, along with looking at his recorded blood glucose checks everyday, they can gather enough information to tell whether or not his diabetes is under control. They also use this information to make adjustments to his pump settings (basal and bolus rates) as well. The goal for a type 1 diabetic is to get an A1C under 7%.
Vince usually runs in the 6's however, he had lots of low blood sugar reactions, which is common when trying to keep your A1C as low as possible. The goal is to have the lowest number possible without having to many weak reactions. About a year ago, when Vince started on the continuous glucose monitor and the insulin pump, his A1C raised to about 7.4 and stayed pretty steady at that level. This is an okay number for a diabetic, however, Vince is not personally satisfied until it is in the 6's. When starting on the pump, it is very common to have a period of adjustment time until you get the right settings. Once you accomplish this, the pump is an awesome tool to keep your diabetes in check, and also gives you a slight bit more freedom on the foods you eat.
Vince recently had a check up and was told his A1C was down to 6.7! This was such a relief to us! He is finally back down to where he likes to be, however he has had some weak reactions. The doctor made some changes to his basal rates and said this should help.
We are also going to be visiting our nutritionist to help with some information on foods that would be helpful in keeping the blood sugars steady and also aid in weight loss.
Visiting the Endo every three months can be trying on my nerves, as it is the time to get the results from Vince's blood work. Hearing that all his major organs are in perfect shape and knowing that he has brought down his A1C to his personal goal is so great.

Unfair Heartbreak and Frustrations

I don't know what could be more frustrating. To be the one with a disease or to be the onlooker of a loved one with the disease. Of course since I am the onlooker, I feel it is the more frustrating view. What are my frustrations? Oh there are so many: seeing the pain Vince goes through and the struggles he has because of it; seeing him stumble through the house and fall down from the pain and weakness in his legs; seeing him have to come to the conclusion at the age of 30 to file for disability, and seeing what that does to him emotionally to know that he is not providing for his family like your average husband does; seeing him get so drowsy from the recipe of pills he is forced to take everyday for his pain, that he at times can barely stay awake to feed himself or test his own blood sugar, what's more frustrating is sitting there and talking to him just to keep him awake until he can get through a particular task, and then having him get frustrated and try convincing himself (and I) that he isn't falling asleep; and what is the most frustrating and heartbreaking of all is when he tells you that even though he knows I am doing all the right things and all I can to help him get through the day, that it sounds like nagging to him but that he knows I can't just stop, because that would mean I would just stop caring so he is forced to deal with it, deal with everyone around him asking him questions that you would have to ask a 5 year old, all because he happens to be diabetic. So which side is more frustrating and unfair? Maybe both. A husband and wife shouldn't have to deal with these situations and unfair heartbreak and frustrations, but amazingly we somehow get through it and love each other more for it at the end of the day.

The Importance of Support

I often think about how important it is to Vince and I to have others support in our daily lives. Is his medical issues the responsibility of others? No, of course not. Let me explain. Envision a box and imagine Vince in the middle. How would his life have been different if he didn't have a stable family and his mother and older brothers to look out for him. How many weak reactions could have been the last if he didn't have someone at home to be alert to his disease. Take a step toward the outside of the box. How would Vince's daily health be if he didn't have a wife as alert as me, to call him throughout the day and make it a point to learn how to be a caregiver to a diabetic. Again, how many weak reactions could have been the last if I were not there to take charge and provide or get help. Now take a step just outside of the box. Vince and I often think how lucky we are to have family, such as his brother's, to be able to call in an emergency situation to run over to our house, when I sense something is wrong, and I am not able to be by his side. Now step far away from the box. Imagine being a diabetic, living in a world filled with people who don't know a lot about the disease unless it personally affects them. How scary it is to us to know that if Vince were to have an episode in the mall for example, that the everyday person wouldn't know what to do. It is scary to think if something were to happen, we HOPE that people would know enough to look for his medical necklace. Diabetes is such a complex and serious disease, and I feel it is so important to educate people around us in our everyday lives, and to know that family is there at the drop of a hat if need be.

A Strange Comfort

Why do I find comfort in seeing other people that are using insulin pumps, or hearing others stories of their type 1 diabetes? It's almost as if when I see this, it makes me feel like Vince and I live a normal life. Seeing how others stop to test, or stop to treat low sugar. Or Hearing stories of others who have weak reactions. It is so intriguing to see this and to see how they deal with this in their everyday life. Being so involved in Vince's treatment, I sometimes forget that I am not the one that is Diabetic. Is this why it comforts me? I read stories or see videos online about people talking about their recent visit to their Endocrinologist and their A1C and it is like they are in my world for the moment. How it makes their day when they have a good doctor's appointment or when they have a good numbers day. I know all to well the ups and downs they go through, and it is very comforting for me to see these stories. I seem to find more comfort in these these things than Vince does. I am guessing this is because this is the only life he has ever known, and to him this IS a normal life. But for me, I have not been a diabetic all my life, or even had much knowledge of it, so this is still new to me, even after 8 years. Although the everyday routines now feel like a normal day to me, it still comforts me to see others who have the exact same events going on in their day to day lives.

When the Alarm Sounds

Drowsiness and low blood sugar combined with an empty insulin pump all at 7:00AM isn’t what I call an ideal morning before going to work, but in my world, it happens sometimes. It starts with Vince’s sensor beeping to alert us his sugar is slowly dropping. I test his blood sugar and it is on the low side, in the 60’s, so I decide to give him some sugar to boost him up a little. I try to get him to drink some ice tea, but he is just to drowsy. The drowsiness from the medications he is taking for his neuropathy can be very overwhelming, so waking him up from his sleep with low blood sugar is nearly impossible. I decide a yogurt will do the job and will be easier to get him to eat. After helping him eat the yogurt, I realize his insulin pump doesn’t have enough insulin to get him through the day, so I tell my sleepy husband that I am going to change it, and not to be alarmed if he feels the stick of the infusion set. As he lies there sleeping, I change his infusion set, refill his pump and wake him enough to tell him I am going to work soon. After done getting myself ready to leave, I check his sensor one more time, and it says his sugar is slowly rising so I feel comfortable enough to leave for work. When I get to work, I give him a call and am able to wake him enough to take his AM medication and explain what I did earlier. He is a little more alert by this time, so I have him do one more blood glucose check, and he is finally above 100, so I know he is back to normal readings and can go back to sleep to get some rest. This sounds like a lot, but with some patience, it becomes routine to listen for the sensor alarm and to take action when needed.

A Mental Workout

So after today I just had to post my workout experience. I have been so stressed and so tired and feeling like I have no strength left in me. I decided to join a coworker and try a class at the gym. Well let me tell you, I must have sweat out all of my anxiety because when I got home I felt so great! (not physically of course lol) My head was so clear and I was so relaxed. I decided I need to set aside time every week for this is as it really seemed to relax me. I never would have thought physical exhaustion would have such a great affect on me but it did. I will definitely be hitting the gym more often!

Finances of a Diabetic

Between doctor appointments with the 5 specialists every few months, and the medication and supplies, maintaining good health as a Type 1 Diabetic can be extremely overwhelming in the financial department. With all of the copays and deductibles along with the insurance premiums, we definitely try to find discounts when at all possible. One thing we have discovered is that doctors tend to have great copay discount cards on medication they prescribe. We have gotten many copays for free for a short period of time when using these cards. Another thing that doctors have is samples from the manufacture of many medications, and even insulin and they are very willing to hand these over to their patients. We have also gotten countless glucose meters from the Endocrinologist.

One thing that many people may not realize is that some doctors will let you pay monthly on a balance and will not charge you interest. About 4 years ago when Vince started his eye surgeries, we did not have the best insurance and the bill grew very fast. I called the doctor after receiving a statement in the mail, and desperately asked if they offered any type of payment plan. The women was very nice and said absolutely and even asked ME how much I wanted to pay each month. Well, we still, after 4 years, are paying monthly and have never been charged interest.

One last thing that we haven't used until this year is the option for a flex spending account. This is when your employer gives you the option to have money taken out of your pay, tax free and set aside and put on a debit card for you to use for medical related expenses. I always knew this would be a good option for us, but the idea of having money taken out of my check each week made me nervous. This year we started with a relatively small amount (in comparison to what I knew we would use) and believe it or not, we used the entire amount by the third week of January. Needless to say this is a great thing for us and we will be putting aside a lot more next year.

Our Home Pharmacy

What many people may not realize is how much that goes into the organization and care when you have diabetes and are insulin dependent. Add in complications from the disease, and you have a pharmacy in your home in no time. Between the full shelf of a 3 month supply of insulin vials and spare insulin pens in the refrigerator and the 4 drawer stacked container of medications, pump and sensor supplies, spare glucose meters, and meter supplies, it’s no wonder we find room for everything, let alone get it organized so that we know when things need reordering. Needless to say, our pharmacist knows us by name. Since Vince deals with so much chronic pain from the neuropathy, along with numbness and muscle weakness, I take care of ordering and organizing all of the supplies, and filling his weekly pill box, as it is hard for him to see and feel all of the tiny pills. As far as his insulin pump and continuous glucose sensor, these things need to be replaced on his abdomen about every two days. I assist him in getting the supplies needed for the changing and do the actual inserting of the infusion set and sensor on his belly. It is very hard for him to feel and see the details needed in attaching the different parts to himself, so we work very well as a team and have this pretty down pat.

The Worrying Wife

I think it is natural for the wife to do the worrying in a marriage, so you can imagine when you have as much going on as Vince and I do, I work overtime at that task. Some overtime is needed, but I think I worry a little too much. It’s the constant questions that have become routine in our home and as we talk on the phone throughout the day. What’s your sugar? Why are you beeping? Did you bolus for that? Has your sugar come down yet? Do you have your black bag? Why are you so tired? Did you remember your medicine? Are you weak? Did you sleep in that chair all night? You fell? Are you okay? Do we need to refill your pump yet? It is never ending. Some of it is very necessary, yes, but I feel like I overdo it, possibly to try to prevent things from becoming issues in the first place, and that is something I need to work on. It’s amazing Vince is so patient with me in my “nursing duties” and actually thanks me for being so great at helping him.

The Diabetic Myth

There is one thing that drives my husband and I crazy. I like to call it the Diabetic Myth: Diabetics cannot ever eat any sugar. Let's set one thing straight. Carbohydrates and sugar are equally as evil to a diabetics blood sugar. Type 1 and Type 2 diabetics live a very different life, as these are two very different diseases. I will concentrate on type 1. An insulin dependent diabetic takes a certain amount of insulin depending on the number of grams of CARBOHYDRATES, not sugar, in the food. Does this mean they can eat or drink as much sugar as a non diabetic? No, it means, in small quantities, sugar is okay. The more sugar in a food usually means more carbs, so therefore you will be taking a larger dose of insulin. This has it's draw backs as insulin can cause weight gain. Also, foods such as ice cream cause the blood sugar levels to spike much more quickly than say a piece of wheat bread. You have to take insulin for both foods, however they digest at different speeds. Slower acting carbs, such as sugar free products, will digest slower and have a slower spike in glucose levels. So, as I said in the beginning, if a diabetic would like to treat themselves once in a while, it's okay, as long as they keep portion control in mind.

JDRF Walk 2010

One day, I walked into Wawa and noticed a donation bucket for JDRF (Juvenile Diabetes Research Foundation). It got me thinking. I should get involved and support Vince and his brother John, both who have Juvenile Diabetes. I did some research online to find out what JDRF was all about and discovered they have a walk once a year to raise money to help find a cure. What a great cause and a healthy activity, to walk for a cause that affects us so much every day. I decided I should participate each year, and although Vince is unable to walk himself, he would come and join in the activities that day if he is feeling up to it. Here are some pictures of my first walk, joined by my sister in laws and family.

Glucagon: A First for Everything

So it seems that after 8 years of being with Vince, I am still experiencing some things for the first time. It was a Sunday morning and I had planned on going to the gym for some much needed me time, and my niece was going to be joining me. I awoke to the sou d of a text from her saying she was to tired and didn't want to go that day. I then discovered Vince who slept on the couch, which is a norm these days. He tends to sleep where ever he can get comfortable. I woke him up to say good morning and ask him to go to bed but he wasn't able to talk to me. I had assumed that he was having some side affects from a new medicine, as it had been happening off and on that week. I told him just go back to sleep and I sat with him there on the couch for about 45 minutes. Normally I would have jumped right up to get his meter and test him to be sure all was well, but with the new medicine causing some of the same symptoms, i checked his sensor and it was reading 105 so I just let him be. Well, eventually it was time for me to get ready and go to the gym, and I thought, maybe I should let him be and sleep it off but something finally told me to check his sugar. After 5 finger pricks, and what seemed to be a broken meter, I got his back up and finally got a reading of 30. At this point I panicked as that is very low, and I knew almost an hour had already passed. I ran to the kitchen to get him ice tea and put a straw in it, hoping he could sip it. Unfortunately he was to out of it by this point so I had no choice but to resort to the Glucagon emergency kit. For those that don't know what this is, it is a emergency kit of a syringe and vial of sugar water that can be injected in case Vince is unable to eat or drink on his own. I have always known how to use this but it was pretty frightening to have to stick this large needle into my husbands leg. Well, once I got it into his thigh, and started to inject the solution he felt the stick and started jumping around. I quickly pulled out the syringe and realized I didn't get all the solution in him. I contemplated trying a second time but was just to scared to try again after he jerked around. I went back to the ice tea and tried to nurse him back. Apparently I got enough of the solution injected into him, because within five minutes he woke up and was coherent. He asked me right away why his leg hurt and I told him everything that had just happened. I felt so bad that I hurt his leg and now it had set off his neuropathy pain. He however told me over and over that I had done everything perfect and thanked me profusely as always for being on top of things and "saving his life". I was so thankful I decided not to leave but I was so upset that I didn't get to have my me time. All of the stress finally got the best of me and I was a mess most of the day. This happens every now and then but I always seem to get through it. Thank God I didn't decide to let him sleep it off.

The Amazing Pump and Sensor

Vince began wearing a minimed insulin pump about 13 years ago. He wore it for approximately 1 year but had horrible skin irritations and had to resort to using syringes again. He used the old fashioned syringe and vial before switching to insulin pens which was an improvement. Pens provide much more accurate dosing and are more convenient to carry around. As the years went on he began to feel his lows less and less and had some very serious episodes. This was very trying on my nerves as his wife, calling him 10 plus times a day to be sure he was coherent and okay. Let me tell you, trying to treat a diabetic in a weak episode over the phone is no easy task but luckily we are very close and in tune with each other that most of the time I was able to provide help over the phone. There were also times I would have to rush home from work to get him help. One day when visiting Vince's endocrinologist we expressed this problem and they suggest he wear a sensor. When they described what the sensor would do it was like a give from God and music to my ears. Could this device actually predict his lows (and even highs) and alarm him before it became a dangerous situation? Of course we called Medtronic and our insurance right away to see if the insurance would cover the device. The doctor explained it is a very expensive machine and so new to the market that the insurance companies are rarely providing coverage. Luck was on our side. The insurance covered a large portion. We made an appointment with a Minimed (Medtronic) trainer that our doctor works with and soon after began to realize the usefulness of this little amazing machine. I could finally put my mind to rest knowing I didn't have to call Vince on the hour to make sure all was okay. He wore the sensor for about 6 months and when visiting the doctor at a routine appointment they brought up the pump conversation, as was very frequent at the visits. As always Vince expressed his concern since he had a bad experience but they were able to convince him to give it another try, and once we found out that he could wear a pump and sensor in one we were sold. The pump took a lot of training and patience (as did the sensor) but we couldn't be happier with the results, blood sugar control, and convenience it has offered. Vince still experiences extreme lows that the sensor doesn't catch since the sensor is very new technology but the episodes are few and far in-between. I am still on alert for him but I calm down much more knowing he is wearing this amazing device

Welcome

Hello. My name is Sandy and my husband, Vince, has type 1 diabetes. He was diagnosed at the age of 6 months old as he fell into a diabetic coma. In his mid twenties, he developed Retinopathy and Peripheral Neuropathy. He has some vision loss and has severe nerve damage in his arms and legs causing extreme chronic pain. Through this blog, I will explain what it is like to be the wife of a type 1 diabetic who lives with many complications from the disease and the struggles, I along with Vince, experience