Misconception

I feel that I am sometimes misunderstood in the DOC. Some people see our story and think I am over bearing and I need to back off. Anyone with or around a person with Diabetes knows, everyones Diabetes affects them and their family in a different way. Our situation is very different from other since Vince has become disabled. I know I worry too much sometimes and yes there are points in our lives when I can become overbearing but 98% of the time, I am needed and so is my help.

We are getting ready for our JDRF walk this Sunday and this is our 2nd time walking. Most of our family is joining us and we are so blessed to have the support we have. I can't wait to raise awareness for this horrible disease that is so misunderstood!! Pictures to come!

Under Construction

I have never had a good look that I really liked for my blog. So I am going to play around with it and add this and that. So bear with me while I reconstruct!

Guest Blog!!

Head over to www.diabetesmine.com to check out my guest blog post!

Type 1, Type 2, and “Brittle” Diabetes……………

Yes, you read that correctly. Brittle Diabetes. If someone told you that you are a brittle diabetic, what would that mean to you? Do you have Type 1 or 2? Is your Diabetes worse than another person’s?

Well, Vince has been referred to by more than one of his doctors as a “Brittle Diabetic”. Of course we absolutely love his team of doctors, so we let it slide. But how they classify “Brittle Diabetes” is my question. My best guess is that they see a Type 1 Diabetic with an assortment of complications and “Brittle” must be a commonly used term in the medical world.

Let me set the record straight however. There is nothing Brittle about one Type 1 Diabetic vs. another.  One may have Diabetes for a very long time and may or may not have developed some complications as a result. I don’t consider the Diabetic with complications any more “Brittle” than the one without. The complications can arise from any number of factors. I personally do not believe that one person has a more serious or more “Brittle” form of Type 1 than the other. Then I start thinking about how Vince’s body handles his disease. We know from a very bad scare that he cannot handle steroids. This is common amongst Type 1’s. After a doctor’s mistake in giving Vince steroids confirmed this, we were obviously very careful in that department. A while later, he tried a different brand of medication for his post nasal drip. Both brands we are told are very similar, almost the exact same thing. We were hoping in switching him to the cheaper, generic form. Well, a few days later, the BG’s started to rise and cause trouble. We realized it was the new medication so he went back to the name brand form. When I questioned our pharmacist and the doctor, they all agreed that the two medications were pretty much the same thing and were a little surprised that one reacted so differently than the other. So Vince must be extra sensitive to medications and steroids.

Does this explain “Brittle” diabetes? Doesn’t every Diabetic react differently to different situations? Some feel every low and high, some don’t. Some need higher or lower Insulin to Carb ratio’s than the next person. One person may have a different normal range than the next. And so on…

So no, there is no such thing as your diabetes being brittle, bad, worse, horrible, great, good, or indifferent…Just Type 1 and Type 2  J

Polypharmacy

pol·y·phar·ma·cy

Spelled[pol-ee-fahr-muh-see]

noun Pharmacology .

the use of two or more drugs together, usually to treat a single condition or disease.

Courtesy of www.Dictionary.com  

Here is a definition of Polypharmacy I found on Dictionary.com . I like this particular definition because it really defines how Vince’s doctor is using the technique. I found quite a few definitions that pointed more to the aspect of patients seeking out medications from different doctors and getting them filled at various pharmacies. Those definitions may be true however I personally do not know. I imagine from all the horror Hollywood stories of overdose on prescription medications, that this does happen. But that definition did not seem to be the real medical definition of the term, in our eyes. So I came up with the one above.

This has been on my anxious mind lately. We have talked about the subject with Vince’s pain management doctor many times. He understands our concern and will always take time to explain why polypharmacy is being used with Vince’s condition even though he knows he has explained it more than once. He has even agreed that it is good to be concerned and to ask questions in our situation.

 If Vince expresses that he feels the pain is starting to get a little out of control, his doctor will suggest changing the dose on a current medication or suggest adding a different medication that has not been tried before. This is what I love about this particular doctor. He is always willing to listen and try new treatments. He has even thought out of the box and tried medications that are not normally used to treat Neuropathy, and some have actually pleasantly surprised us. The main one that sticks out in my mind is when he gave him a spray that heart patients normally use orally. He instructed Vince to spray it on his legs and feet when the pain spikes. He did tell us to watch for low blood pressure but explained the proper way he wanted it used topically. Vince and I both left the office thinking this was crazy. How can this work when the medications specifically for Neuropathy don’t even always work. Well, it worked and it is actually one of the few medications that gives him real relief! This is why listening and never being afraid to try new and different things is such important qualities to us in a pain doctor. Not all doctors are this open minded.

The doctor also explained that the use of polypharmacy with Vince’s medications is helping to keep the narcotics at a minimum. Yes, he is a pain doctor and he prescribes Vince pain medications. They are however very controlled and are kept at a minimum as much as possible. He explained to us, that by adding all of these other various “neuropathy” specific medications, it is helping to keep the narcotics at a minimum. I liked this explanation. I never quite understood why they would constantly add more and more medications to his regimen. I thought, this can’t be right. This is getting a bit ridiculous. But after he explained in detail why he was treating Vince in the manner that he was, it made sense. I look back to all of the appointments where Vince went at his wits end hoping for some relief. If the doctor were to just increase the pain meds every time instead of looking for alternatives, it would have spiraled out of control. I feel a good pain doctor does not let this happen. To the contrary, he also doesn’t deprive Vince of medications and say tough luck as some do. He always has something new to try. To give him hope of relief. He seems to really understand the disease and genuinely wants to help Vince get out of pain.

Our Family Notebook!!

I have been wanting to post about our family notebook for some time now. It was the therapist that we see on occasion that gave me the idea. She said it may help me from feeling so overwhelmed from all I have going on. So I gave it a try and I love it!! I am still tweaking it here and there. I think as time goes on, I will always have the need to tweak it in order for it to work with our ever changing and busy life. You can see some of the divided sections in the picture. I have all of our cleaning lists, calendars, menus and grocery lists, medical info, and more all at a fingers reach for Vince and I. Everything in our life from car maintenance to food menus is all in one place. It has helped us tremendously. If you would like to try it too, just Google for ideas and you will soon be making your own! Just had to share this great idea!

Calculations Are His Part

I have learned so much about Diabetes and I am still learning. This was a disease I knew nothing about 10 years ago. The only thing I knew was that Diabetes was “the one where you couldn’t have dessert cause it was bad for you” disease. Everything from the basics of carb counting to the complications that can occur have been taught to me first hand. I remember one of the first things Vince explained to me. It was the sliding scale. I am not sure if this term is used as much today, but this is what he would tell doctors when they asked his insulin dosage and regimen. He would say, “I take the amount of insulin needed based on what I eat.” It didn’t make 100% sense to me, but over time, I realized it was carb counting. With all of that being said, the one thing that I am not good at is the actual unit dosage he needs for a specific food. Sure, I know how to carb count. I know his ratios and corrections however as you all know, different foods react differently in everyone. So I may say to him that I think he needs 10 units to cover dinner, but he will take more or less if we are having a specific food that he knows reacts a certain way in his body. The only time I end up giving him bolus doses is usually corrections for highs. Lately, he has been running high in the early morning when I leave for work. I will wake him and tell him what he is running and ask him how many units he wants me to plug in. He will give me the total number in his drowsy state and I usually say, no way. I’m not giving you that many. I’m scared. I am scared to pump him full of insulin (literally) and then leave for work. A few days ago we went back and forth. He explained that when he hits over 300, then he needs more than the normal correction ratio. Does this make sense? No. Does Diabetes ever make sense? No. I argued out of fear and we compromised on a few units less. That evening I asked him how his numbers were when he eventually woke up. He said his blood sugar barely went down. I said how is that possible? I know when he is slightly high, say 180 or so, the normal correction that his doctor has programmed in his pump, is enough to bring him down back to a normal level. He didn’t have an answer. The only thing he said was that he knows his body. He knows what works and what doesn’t. He reminds me that he has been doing this for 32 years, and I can do nothing but agree. I made him promise me that he had to be careful when using a large bolus without me home. He agreed and said he understands my worry but knows what he needs in order to get it down. So, the next day, I woke him up because he was high again. I gave him the dose he asked for. And guess what? It worked. He didn’t crash. His BG came down to a normal level. So we have agreed that the bolus doses are on him. He is better when it comes to that part of his care. I have to just have faith and trust him to know what he is doing. It’s hard, but I know he knows his body very well. So we move forward.

It’s Not Exactly The Same But…………………….

Ever hear people say how taking care of their kids is a full time job? Day and night, right? They always need something. How do you think that compares with taking care of a disabled person?

That being said, this is what has been getting under my skin lately. When having conversations with co-workers and they will say, “well you don’t have kids, so you’re not as busy” This drives me crazy. These people know my situation! First of all, the part of me not having kids of my own is a sensitive subject that I am trying to work through. So that alone will set me off. (that is a whole other story) But back to the comment. I agree kids are different than an adult who needs assistance. I have also been around them plenty to understand though, as much as I can possibly understand without actually having my own. My nieces and nephews are like my own, and there have been times that I would see them every single day. So I understand where these parents are coming from when they say it’s nonstop. My argument is the fact that, I work like the working parent does. I work 2 jobs in fact. I come home and have to clean the house, do laundry, make my lunch and breakfast for work the next morning. Make dinner for Vince and myself and be sure there are leftovers for him to heat up the next day for his lunch, and then clean up afterwards. Give injections and/or medications to Vince and make sure I am home in time to change his pump site or CGM site. Put medication on his feet. Check the doctor appointment schedule. Make sure to check the medication supply about every other day to be sure we are not going to run out by the time the next supply delivery arrives. Call the mail order pharmacy to schedule the deliveries. Then you have the issue of Vince not being able to do things for himself if he is having a really bad day. He’s thirsty. I will get him a drink. He needs the iPad from across the room and can’t bear to put weight on his pained feet, so he asks if I could please get it for him. I don’t do all of these things every day. Maybe more some days than others, but it is nonstop. You get the idea. I am not by any means complaining about helping him. I love him and want to help. He is very considerate when asking me for things or help. My point is that he unfortunately needs me in ways children need adults. Some days are better than others, but what I want to say to these people when they make comments about me not having children is, “take a walk in my shoes for a day and let me know how easy caring for a disabled person is, and then we will talk”