Lot's Of Questions, Trying To Sort Out The Answers For Myself

What is the definition of family? Is it the group of people whom you were born to and/or raised you? Is it simply the people in your life that you are closest to? If you don’t have family, who do you have? Do you have friends? Do you have someone else’s family to rely on and to think of as your own? To be there for you when no one else is? Will they be there for you long term?

How do you know when to take a step back and build a protective wall around yourself? When is the right time to say enough is enough? How do you know when the right time is to put your foot down and stick up for yourself and your feelings? Are there people that should get a pass in how they treat you simply because they are family? If you stick up for yourself and it causes you and your family to divide, is it worth it? Or should you have kept it all quiet and kept on taking the abuse? How long should you keep letting your feelings get hurt before you take it into your own hands and stop it?

Once you put a stop to being hurt over and over, what are you supposed to do if it means you can no longer be around your family? The family that has been there all along, even though it has been rocky? How are you supposed to get over the hurt of having to chose to let them go in order to protect yourself from the constant hurt and let down? You talk to therapist after therapist about letting them go and building the wall between yourselves, and they reassure you that you are doing this in order to protect yourself, but how do you let go of the guilt and the fear of not having your family in your life any longer? They remind you that family does not mean blood and that family does not mean they can treat you any way they please, but how do you get past that word, family? Haven’t we as a society been conditioned to put family on a pedestal? What if that family makes you more stressed, hurt, and anxiety ridden than happy? Is it okay to let them go in order to find your own happiness?

A Long Time Coming...

The title of this post means more than just one thing. Although I am not ready to share details of what has been going on, I did want to write a post addressing it. I apologize in advance if this doesn’t make a lot of sense since I am not sharing details, but I wanted to write what has been on my mind.

So what has been a long time coming? Well, this post for one. After everything that has recently happened, I have been at a loss for words. How am I supposed to blog if my thoughts aren’t even clear? If my head feels so confused. Then you have the recent event. As much as I didn’t know, it has been a long time coming as well. It seems that I was so focused on getting through day to day, that I lost sight of the big picture. Vince has been having a very hard time recently. He is so good at hiding it, that I didn’t even realize what was going on around me. Maybe there were signs and I ignored them.

The Sunday after Thanksgiving, one of my worst fears and nightmares almost came true. I still replay the events of that night and the week that followed in my head over and over. Every detail from the start of that night, through the entire week. As I replay everything in my head, I think I am trying to figure out how I got through it. Of course that answer is clear. Vince’s family. Without them, I would have lost 50 pounds and been a complete mess that week. Words will never express the love I have for them. For helping us through that hard time and for always being there without hesitation.  I didn’t know what to feel at the time and I still don’t. Was I happy that everything turned out okay or was I was feeling sadness, anger, betrayal, and hurt. Quite honestly, I think it was and still is everything combined. Talk about being confused. I have spent the better part of the last 6 or so years making sure nothing bad happens to Vince. He has so many health problems. I just couldn’t handle if anything else happened to him. What if I ever lost him? It would feel like my world would literally stop in its tracks and fall apart. How would I ever move on? I surely couldn’t go home to our house without him, and that has now been proven. He is my partner and my best buddy in everything I do in life. I don’t have a family that supports me and the life I have chosen. I would feel so alone.  I now know that I have his family and can rely on them for support, but it still scares me.

Vince’s medical issues have affected our marriage in so many ways. It has affected us physically and mentally. Add in my anxiety, and it is a recipe for disaster. Some days I just cry. All I can do is cry until there are no tears left. I even get to a point where I forget why I started crying and yet the tears still flow hysterically, sometimes for hours. My very recent cry was about the “normal” marriage I feel that Vince and I have been robbed of. When I say normal, Vince along with our therapist, ask me what I think is normal. I admit. Maybe normal isn’t the right word. But when you think of a marriage, a few distinct things pop into your head and a lot of those things are not a part of our marriage right now. I wouldn’t know how to act if I had a husband that wasn’t diabetic. One who didn’t rely on me to care for him. Once you do something long enough, it becomes natural for you. I don’t feel like I am different. Well, that is until I stop pushing my thoughts and feelings deep down. Eventually, every so often, something happens that makes them come to the surface and I am reminded that we are not normal. We do not have the life we wanted. We don’t have the marriage we both dreamed of. We don’t have children to call our own. To raise and to love. But when I finally calm down and Vince talks me through my tears, it all seems okay. It all gets pushed back down, deep down, until next time. Until the next cry comes. With the recent event, Vince and I are trying to communicate better. I feel we have always had decent communication but I think sometimes, we don’t completely tell the other what is on our mind because we know it will break their heart. I don’t have the heart to tell him what I feel our marriage is lacking. Because I know he is doing what he can. But now, we are trying. We are trying to tell one another what is really bothering us. Because as we have seen recently, holding it in is just going to cause someone to eventually cave.

VLOG!

I am going to start doing video blogs on YouTube! Stay tuned!

What Exactly Constitutes Normal?

I have been feeling very appreciative of my marriage lately. Appreciative of what a wonderful husband Vince is to me. I miss him when I am working and call him just to hear his voice. I am giddy just to be with him. To watch TV and laugh with him. To go out shopping with him.

And then, I wonder. Is this normal? After being with someone for 10 years? Is this what a normal marriage is like? Or are these feelings exaggerated because he is sick? There have been times in the past where I worried about a day when Vince isn’t around. When I am alone, without him. What would I do if he were to pass away? I can’t imagine going through life without my best buddy beside me to laugh and cry with. To lean on when no one else in this world can make me feel better.

If he wasn’t sick, would I have these thoughts and fears? If life threatening situations were not in my face, would I internally rationalize this love differently? What is a normal marriage like? Or normal love? He is my first love so I don’t know. Is it normal to want to spend every minute I can with him. To look forward to going home from work to him just so I can laugh with him? I feel like I can’t get enough time with him. But who is to say he would die first? Although I am not sick, you never know what can happen in life. Is it my anxiety causing these feelings? Maybe it is.

Then you might have the people who read this and think that I have issues. I need more counseling to get a hold of myself. Of dealing with my situation. But, I am happy. If my biggest issue right now is that I can’t get enough of my honey, then I’m probably not too bad off J

All I know is, I cherish every day I have with him. He is my everything.

Our New Members...

We have a new Sugar Free Floyd as well as our very own Medtronic Lenny The Lion!

Sugar Free Floyds walk for JDRF 2012!

This year, even with Hurricane Sandy on the way, the Sugar Free Floyds managed to walk for Juvenile Diabetes Research Foundation (JDRF) We had such a great time with our family. Each year our group gets a little bit bigger. It's such a great day for Vince and I to celebrate his strength and to raise funds towards better treatments and a cure. Here are pictures of the big day! Enjoy!

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”

Never too prepared

I have posted about this in the past but thought I would talk about it again. Some people like to keep spare supplies in the car in case of emergencies. Spare strips, meter, glucose, etc. I have never been a fan of that due to the car reaching extreme temperatures during the Winter and Summer. Most, if not all, diabetic supplies instruct you to store within room temperature. So since Vince is with me 99% of the time when he leaves the house, I thought it only made sense to keep the spare supplies in my purse since I don’t leave without it. He doesn’t drive, so he’s rarely out of the house without me. When he does leave the house, he brings his regular supply bag with him. I have decided to carry glucagon, a meter, some glucose, 2-3 spare test strips, a spare pump battery, and a few other odds and ends in my case. Since test strips do expire over time once you open a new pack, I take 2-3 strips out of his current pack and put them in mine and date it. That way I will know how long they have been in there and if they need to get thrown out, it is only a few. I do also have a note card stating that the supplies are for him, not me, just in case. I wouldn’t want them to think I was the diabetic instead of him. Luckily, we have not had the need to use the supplies for emergencies yet, however they have come in handy. We attended a wedding and he didn’t want to carry his bag with him all night. I already had my purse, so there was no need for him to carry around his bag anyway. He just tested with the supplies in my purse. He did need help at this particular instance, as the lighting was dimmed at the reception so it was difficult for him to see what was being done so of course I helped. With his vision issues and his nerve damage issues, he needs my help more than people realize. I think this is why I feel like I am the Diabetic sometimes. I am just glad that he accepts my help and that we work together. Normally we don’t even have to speak to get these things done. It’s almost as if it’s his brain and my eyes and hands sometimes. I always say his disabilities have seemed to have brought us closer. Maybe this is why. Because we both have to be on top of our game to keep him healthy. But I don’t mind. I don’t mind doing all this if it means he is healthy. We are a good team.

It's An Adjustment

For quite some time now, Vince and I have had a very strict routine. Ok, maybe more on my part than his, but we both stick to it. There have been many times when I would call him during the day and he didn’t answer the phone. I would then rush home to find him passed out from a nasty low. Then he began using the Continuous Glucose Monitor (CGM) and things improved, but I was still not comfortable to leave for an 8 hour work day without checking in. So we made a plan. A schedule you might say. I leave for work around 8AM. I call him between 10:00 and 10:30AM to wake him up and check in. I then call him again around 2:00PM-2:30PM before he lays down for his afternoon nap. We have found that by checking in throughout the day, we are both comfortable in knowing he is okay.

Now a few years later, we are still doing this routine however the serious lows have been a thing of the past thanks to the CGM alerting him since he no longer feels them. The lowest I have seen him recently is in the 50’s and he is able to get something to eat and drink before it drops any lower to where he can’t help himself. Normally, he is alerted early enough to where he takes action before he even gets lower than the upper 60’s. When I started my second job, I would call him on my break. Usually my shift is 4-5 hours long however in the past week or so, I have tried going to my second job and not calling him on break. Surely he will be ok for 4-5 hours right? Yes, for now we are in a good phase. We have it down to a science you could say. But my anxiety pipes in and reminds me that with Diabetes, anything can change at any time.

So now, we are going to try adjusting our schedule. Although Vince does like to hear from me during the day (since he is home alone everyday) the multiple calls do get a bit much. How much can we possibly talk about every 3-4 hours? You get the picture. So what we are trying now is one call during my 8 hour work day around 1:00PM. I did ask him to text me when he wakes up and when he lays down in the afternoon but that is only going to be temporary. He hates to text. It’s hard for him to see the screen. So I asked him to just text me a bunch of nonsense letters, just so I know he is alert and well. Then after a few days when I am comfortable, we will go to just one call a day. It’s so scary for me. But I just have to remember, it’s only 4 hour increments so it’s not too bad. It’s bad enough to worry about him, but when you add in my anxiety, the racing thoughts take over and you can’t think of anything except the worst possible case scenario. We’ll see how it goes!

A Few Updates...

I thought I would post a few updates on Vince’s health as well as my own.

Vince went to the audiologist for his second appointment regarding the hearing loss in his right ear. It turns out there was fluid in his inner ear and they were able to clear it out. Vince was terrified that the Diabetes had caused deafness which we learned it is a true complication of Diabetes when talking with the doctor, but he was very lucky to have finally gotten away from yet another complication.  As it normally goes with Vince, when something goes wrong, it usually turns out to be the worst case scenario, but this time it wasn’t! We were thrilled! He also had his 6 month follow up visit with the pulmonologist. The asthma has been under control with the Singulair he was prescribed and the doctor was happy with how his lungs sounded. He asked Vince to come in for a follow up 1 year from now. Normally, Vince’s follow up appointments for his specialists vary between 3-6 months so that they can keep an eye on him, so when he said 1 year, we knew this was a good sign and that he is stable, at least in this area. One more good appointment he had was with his Endocrinologist at the University of Penn Hospital. Don’t be confused. Vince sees TWO Endocrinologists. One for the Diabetes management and a second for the hormone management. Well, the tests came back and the HCG shots he has been on have worked and his testosterone is back up to a normal level. Although he will be taking the painful shots long term, he is happy to finally feel a little better with the hormones leveled out. This doctor ALSO said she would like him back in 1 year.

These are little victories, but looking back over the past 2-4 years, it is showing that some of his diseases and conditions are stabilizing. All of our hard work is paying off.

Now on to me. I have had a few issues myself lately. Having extremely bad stomach pains and upset after a meal once in a while has always been a norm for me. I just always assumed I had a sensitive stomach and since I am not too careful about what I put in it, then I guess that is what will happen, right? Well, a few weeks ago, I had horrible heartburn and pain in my side, around to my back. I went to the doctor and they said take it easy on the food and prescribed me some medication for the heartburn. A few days later, all was well. Then about two weeks later, I had one of my stomach episodes while I was at work. I will save you from the details, but this was the worst episode I ever had. I called my family doctor and after explaining my symptoms, I was advised to go to the ER. The ER doctor gave me some medication to help me feel better and took some blood work and advised me to follow up with my family doctor. I have since been referred to a gastroenterologist. I think what I will be told is Irritable Bowel Syndrome. So long story short, I probably need to eat more bland foods and watch what I eat overall. I have since been doing this but it isn’t without a struggle. I am a huge emotional eater. Happy, sad, angry, or anxiety ridden, I turn to food. It’s an adjustment, but I think I can keep it up!

Newly Diagnosed Feeling........

So much of the time, I feel like I am a newly diagnosed Type 1 Diabetic. Weird, right? Maybe that is why I feel connected with so many of the Type 1 Moms I “meet”  with young children. You see, although I have known my husband for 10 years, it wasn’t until the last 3-5 years that he really needed me to be more involved with his care. All of his care. I say 3-5 years because it was over time as his complications arose, that he needed more and more assistance to do things. So in the beginning when we first met, I learned what I did about who he was and about Diabetes, but didn’t give it much thought or concern. I knew he had this for a very long time and knew that he knew what he was doing. There was no need for me to worry or help in the sense I do now. I have said this before, but I think the day all of that changed for me was when he passed out at 2AM one night from a low and went unconscious in bed next to me. I awoke to him shaking uncontrollably. (I posted about this in a much earlier post) That was the scariest thing I had ever been through. I may have been involved before then, but that was my wake-up call and the one time that I can say truly changed my role as a Vince’s wife.

So why do I feel like a newly diagnosed Type 1? Well, I give shots, prepare the pump and CGM, inject the infusion sets and sensors, make sure I am home if I know his pump is almost out of insulin and he needs me to change his site, order medications and organize our “pharmacy”, watch for highs and lows while Vince is awake (due to the side effects of his neuropathy medications) AND asleep, give bolus’ in the middle of the night and coax food into a sleeping body during a confused low, check on him throughout the day to be sure he is ok, keep a spare meter and supplies in my purse along with Glucagon, make sure when we are leaving the house for an hour or for a weekend that he has his supply bag with him, and probably a lot of other things that have slipped my mind at the moment. It’s as if I am the diabetic except the needles and numbers are not my own.

All of this is new in a sense to me. Vince hasn’t expressed the need to connect with other Diabetics for support like I have. He has lived with this disease almost since birth so he doesn’t feel different. He feels normal (aside from the neuropathy but that is an entirely different subject) Not like me. Although it has been 10 years, it is still new to me. The care I am now giving him is new to me and I am still in the stage where I don’t feel normal. This life is not normal. The needles, the worry. The life threatening situations that are thrown at me (us) sometimes multiple times a day. It is not my normal. But truth be told, every day that passes, it feels more normal than the last.

I am so lucky to have Vince. He supports me and shows his appreciation for my taking care of him fairly often. We both know the situation we are in is not a good one and we both know it sucks. But I can’t think of a better person to be in it with. I love him more and more every day. I know that is so cliché but it’s the truth. He is my hero for dealing with what he does with such strength. He is truly my best friend, my teacher, my hero, my love, and so much more.

Difficult Situations Made More Difficult

As most of you know, a low sugar episode from having Type 1 can cause any symptom you can imagine from sweats, confusion, irritability, or fatigue, to the term that was used this morning by my groggy husband, “wigging out”. It’s always different in each episode. You never know what you are going to get. Now, if you look at the side effects from the strong Neuropathy medications Vince is on, a lot of the symptoms are very similar, fatigue or extreme drowsiness being the most dominant.

Now let me set the scene from earlier this morning:

4:00AM                Our cat wakes me up to let me know Vince is asleep on the couch and he may need help (yes, she actually comes to get me when she thinks he might need help) I go out to the living room to find Vince passed out on the couch. I wake him up and coax him to stand on his feet. I think I may have tested his BG too but I forget since I was half asleep. Once he got on his feet, he went to the kitchen to have two popsicles since he was on the low/normal BG line according to the CGM. He came to bed around 4:30 and was snoring before he hit the pillow. I fell back to sleep around 4:45 or 5:00AM

7:00AM                I am awoken by the CGM alerting to a low, along with my alarm clock. I snooze the alarm and ignore the low alarm figuring he would be fine for ten more minutes. I can usually predict when the CGM is giving a false reading. Don’t ask how, I guess it’s a 6^th sense. Kind of like when I could sense he was low before anyone else including himself before the days of CGM. Anyway, 10 minutes later, my alarm clock goes off again so I get up. I hear his low alarm again so I take a look. 46 is on the screen. CRAP. It’s not usually off by this many points, so he must be low. I quickly grab his meter, expecting a nasty result and what I get instead was 106. Whew, not 46. Good. Calibrate and move on. I start to get ready for work. The low alarm keeps going off but I ignore it.

7:55AM                I am about to leave to go to job #1 of 2 for the day and as I am about to leave the bedroom, he starts to sit up in bed and talk gibberish. First thing in my head was, “he’s low”. I rush over and try to talk to him to see if it is a real low or just medicated drowsiness. I test his BG one more time since this time it says 40 on the CGM. Again, it’s normally very close to his actual BG so being this far off was odd. Fingerstick, and 96 appears. I take his head in my hands and have him look at me and raised my voice to get him to snap out of whatever was going on. “You’re not low, your 96. What’s wrong? Why are you talking crazy? Wake up. Look at me.” He then says, “Check my BG” I said, “I already did. Your 96. Look me in the eye. What is wrong? You’re not low.” He then snaps out of it and says, “I’m not low, why am I “wigging out”? I asked him if he was tired. He said yes. That must be it. I told him to lay down and go to sleep. He falls to his side in bed and after I nudge him toward the middle of the bed so he didn’t fall off, I say again, loudly, “you okay now?” He said “yeah” and I leave for work.

So is it a low or a medication issue? Not always easy to tell. The lows I can deal with nowadays. A medication issue? Not so much. I have called 911 in the past because I wasn’t sure which it was. Turned out that time it was a little of both. One day I hope the neuropathy settles so that things will be a little easier…

Another Side of Me to Meet

Why do I find it so much easier to talk about Vince’s illnesses than my own? Is it because his are physical and mine are not? Maybe it’s simply because it’s him, not me. If I look at it like that, that sounds quite unfair if you ask me. I am willing to discuss all of his medical situations and ask for support, but when it comes to my own, I want to run and hide and not tell anyone? Why should I feel any different? I don’t know, but I do. I think part of the reason is that this is who he is. Type 1 Diabetic. Practically since birth. It’s part of him and has always been part of him. Well, that is not the case for me. You see, I have Anxiety. Really bad Anxiety. I developed it about 5-6 years ago. I found myself yelling at Vince for no reason at all. Crying on Sunday nights because I was so stressed about the work week to come. Racing thoughts in my head about this or that. I always shrugged it off as me being a little stressed. I remember the Sunday afternoon when Vince pleaded with me to go to the doctor. I was crying, bawling, on the side of the bed as Vince just sat there with me asking me over and over why I was crying. I said “I don’t know” and it was true. I had no idea why I was so upset. I said maybe I am just a little hormonal. He said, this has been happening more and more. I think it’s a little more than that. A short time later, I made an appointment to see our family doctor and was put on Lexapro. I began to feel a lot better. Around the same time, I began seeing a therapist too so I could start to deal with everything going on. It wasn’t the first time I saw a therapist. Having divorced parents, I had been on quite a few couches in my life as a child. People asking me this and that about my parents. Well here I am, now an adult and dealing with new problems. Anxiety and depression runs in my family and affects multiple family members, but it was never me. I always thought of it as “their problem” not mine. Not my disease or mental problem. I like to think I was always the quiet, caring, calm, and collective person however I no longer feel this way. I don’t feel like myself anymore. I told Vince about this recently and he said what do you mean? You’re not a child anymore, so of course you won’t be the exact same person as you once were. Your still all these things. The anxiety hasn’t changed who you are. I understand that but I feel like it has. I feel like it has made me an uneasy, and “hyper” like person. I often wish I could go back to the days before I had anxiety. Before all of the worrying and racing thoughts. I have good days and bad and have tried a few different medications but I feel best on the Lexapro and the Xanax for any especially bad days I have. I know I need to accept that this is the “new me” but it isn’t easy.

What? Huh? What was that?

A few titles for this one…But decided on the most creative…

Never Think It’s not related…

What ISN’T a Diabetic complication…

This can’t be…

About 6 months or so ago, Vince complained he couldn’t hear out of his right ear. We went to one of our family doctors and they flushed the ear however nothing came out so they sent him on his way. When the problem persisted, we went to see our regular family doctor and he also flushed out the ear. Again, nothing came out. He said there was some wax build up, but the other ear actually “looked” more clogged than the one he complained about. He flushed both ears and suggested he see an ENT specialist. Shortly after, I called the specialist and made an appointment. Due to my work schedule, and the fact that I am running out of vacation time at my full time job, I pushed back the appointment about another month to a day I already had planned to be off. (you would think 21 days off a year would be enough, but nope) We finally went to the appointment and met with the doctor. After filling out the paperwork on his medical history, the doctor came in and looked in his ears. He also said that there was some wax, but the “good” ear was more built up than the bad ear. He physically removed the wax from both ears and sent us to another part of the hospital for an extensive hearing test. Afterwards, we went back to the doctor’s office for the results. The doctor explained that there is very significant hearing loss in the right ear which he thinks is due to fluid in the inner ear. What the test also showed however is that both ears have some sort of hearing loss. He showed us lot’s of charts and graphs that were a result of the test but basically, his hearing was barely at the normal line, aside from the suspected fluid. He said this could be hereditary or Diabetic related. At that point, I did not worry too much. He gave Vince some instructions on some over the counter medication to take and instructed us to come back in 3 weeks to see if the fluid was gone or not. If not, they would cut the ear drum and drain the fluid. I thought this sounded relatively normal for a “fluid in the ear” situation. It wasn’t until days later, that Vince expressed how concerned he was that got me thinking. What if this was yet another Diabetic complication in the works?? All this time, I had brushed it off as a normal, non emergency type of situation and underestimated how bad the problem really was. Of course I did what your never supposed to do, but I always do: I googled “Hearing Loss + Diabetes” Below is a link that came up. I am inclined to believe what I am reading since it is the American Diabetes Association site. It seems that this problem is not a known complication, but a true complication that can arise. GREAT. All I can do now is hope to God that it is simple fluid and not another complication. He already has significant vision loss. Please let’s not lose hearing too.

http://www.diabetes.org/living-with-diabetes/seniors/hearing-loss/

An Idea....

I have been throwing around the thought of creating a second blog that focuses on my struggles as a wife, caregiver, and person with Anxiety. Although Diabetes will probably be a big topic, it will not soley focus on the subject like this blog. I am wondering however, if I will find the support like I have found in the DOC. What are your thoughts?

A "Good" Phase

Vince feeling his lows seems to go in phases and depends on the severity of the low and how fast he drops etc. If the CGM alerts him far enough in advance, he seems to do pretty good however if he is too drowsy to hear the alarm, he is less likely to be able to respond and take action. We seem to be in a good phase lately with him catching his lows. They have been coming in the wee early morning hours right now and he has been coherent enough to get up and get cereal to catch them before they become severe. I have been finding him up when I get up for work. So glad he is catching them! That CGM alert is doing its job!!! I know these phases don’t last forever (maybe I’m being pessimistic but I know how these things work) so I am enjoying the break from “shoving food and drink in his mouth as he is asleep” phase. Until it returns….. J

I Am Rambling.....

Have I taken on too much? I don’t think so. At least the better part of me thinks I haven’t. I look at it like this: Yes, I work 50-60 hours a week however I don’t have a big social life so it’s not like I don’t have the time, right? I think what I am realizing is that I have the time but maybe not the mental time and energy. I think I have to keep working at it and give myself a chance to adjust to the new working schedule. I have been so tired lately between working, cleaning, cooking, and taking care of Vince, but when do you say enough is enough? That it might be too much. I feel like I should be able to handle all this without a problem however, as I have been told in the past, I seem to be a bit harsh with the expectations I have for myself. I see things that need to be done for us to keep going so I just do them and push all problems or feelings aside. Someone has to do them, right? Between the two of us, I am obviously the more healthy person so I gotta do what I gotta do.

Am I rambling? Yes. Yes I am. Why? Because I am tired physically and mentally and it has caused my anxiety that I had under control recently to flare up again. I really hate that I have anxiety. I never had it in the past. It does run in my family though, but why now? Why did I get it now? I don’t feel like my normal self. I’m referring to my normal self from 6 or more years ago. What happened to that Sandy? Calm and collective. Thought with a clear head. Was I really always as normal as I remember? Or did I always have some sort of anxiety that I didn’t recognize until it got bad? I don’t know but I guess what I need to do is work on accepting the fact that I have it and I need to accept that it is who I am now whether I like it or not. Just needed to vent that…………

New Start, New Look!

Blue bubbles or circles as I saw them. Perfect for a Type 1 Diabetic theme!

One More Time

I tweaked my URL again. I think I am done now! Please follow me here!

lifewithadiabeticspouse.blogspot.com

I Just Know I Can

Being the wife of a Type 1 Diabetic with complications is no easy task. You figure, the man is 32 years old and has had Diabetes since he was an infant. He can handle things pretty well on his own by now. However that is not our life. When you add Diabetic Neuropathy and Diabetic Retinopathy into the Type 1 mix, an already challenging world becomes a world so different from the Type 1 world others may or may not know. One you never thought you would have to deal with. You now look back and wish all you had to deal with was the Diabetes itself; that was a piece of cake compared to this! Although we all know Diabetes is no piece of cake which tells you how hard things really do get when you add in the complications.

As Vince’s wife, I have to do things for him that I never dreamed of. I was not one of those little girls who had the dream wedding and family in mind at the age of 10. I never really thought about what life would be like when I got older. At 18 years old when I met my future husband, I never dreamed what being his wife would entail and what we BOTH would have to endure in order to keep a marriage together and a household going. I never imagined having to care for my husband who would soon have 3 serious and debilitating diseases. I never knew how important my employment would mean to my family. Not only for the income since I would be the only one working, but for the health insurance. Losing the health insurance we have would be devastating in more ways than one.  At 28 years old, you don’t think you will be putting your husband’s shoes and socks on before leaving the house. You don’t think that you would do anything to have someone drive YOU around for a day since you are the one that is always in the drivers seat. You never imagined yourself becoming a self taught nurse who administers multiple injections almost daily since you were always so afraid of needles, just the word would make you cry. You can’t imagine how you ever learned to navigate the healthcare system like a pro. As a child, I was rarely sick. Never took anything stronger than some Robitussin for a cold. Never would I have imagined that I would know “our” pharmacist by name and could practically fill our own prescriptions better than some of the pharmacy technicians on staff. Sunday mornings now consist of filling Vince’s medication box for the week, approximately 10 medications (not pills themselves) in all. I never thought that by the age of 28 I would miss our “family cleaning days” of the past. I sure do appreciate those days when we would BOTH clean on Saturday mornings together. Now that is on my shoulders along with all of the cooking. If I am lucky, I have Vince with me to do the grocery shopping, and just hope that he can make it through the store holding on to the shopping cart and stand in the long line before needing to sit down in the car. During all of this madness throughout my day, I always have to be aware that his sugar can drop or raise for no apparent reason and hope that the drowsiness of his Neuropathy medications has not overtaken him at that moment so he can attend to his Diabetes care himself. Never did I imagine that I would have the best marriage a girl could ask for. We never fight or argue. We are truly each other’s best buddy. We spend 24/7 together and will never get tired of each other. What is the one thing that does get in the way causing arguments? The fact that I have to treat him like a child more than anyone would want. Think of all the things I mentioned above. A lot of them are things you would have to do for a child with or without diseases. So. Not. Fair. One last thing I never imagined is peoples responses towards my life. You have the majority of people who praise you for doing so well and for keep pushing forward. For giving so much of your own self to take care of your husband. I never know what to say to those compliments. I just smile and say, I don’t know, I just do it. Then you have the people who ridicule your lives. Maybe they do not know how to take the situation or what to say, but people say things to you that you can never imagine saying to someone in your shoes in a million years.

Along with all of the things I mentioned above, I work 40 hours a week. That wouldn’t be any different if he was the healthy husband that anyone else has. I even may still carry the health insurance for the family, if my plan was better than his. But on top of all this, I have now taken on a second Part Time job at a local grocery store. I never thought I would be able to work two jobs. The thought of working 60 hours a week is quite daunting.  How am I going to work 60 hours a week and still take care of a disabled husband and keep our home going? Honestly, I am not sure. But it has to be done. We need to catch up and this is the only way it is going to happen, for now. But what I try to tell myself as I get ready for my new adventure is: how do I get through our daily life as it is already? I don’t have an answer, I just know I can.

Have I changed?

Has been married to a diabetic with complications changed me? Yes and no. I believe I am still the caring, sweet person I have always thought myself to be however I no longer feel like the push over like I used to be. I often feel like if I can deal with everything I do, and still be a pleasant and good hearted person, then other people in this world around me have no reason to do bad things or treat people poorly. Obviously no one is perfect, but living the life I live has definitely made me look at the world through a different view.

I'm Back!

You may have been wondering where I went and why my blog had become private. It is a very long story but let’s just say a few people that were reading it decided to judge me and Vince and hold it against us. I had no way of blocking them from the blog so I had to mark it private until I could figure out a way to reopen it to people of my choice.  After many months later, I finally figured out how to change the URL. I will only give this one out to a select few (other than the DOC)

So where are we at today? I am still working 40 hours a week and unfortunately I am looking to add a part time job to the mix as well. Vince being on SSDI has more than caught up with us so we need a bit more income. Vince is doing as well as he can. He is still dealing with the excruciating pain and vision problems however all of the diseases are under control and steady for the moment. He is still using his Minimed Revel Insulin Pump and Continuous Glucose Monitor and it is wonderful as always. You know how much I (we) love that little gadget! His extreme lows have been scarce however I continue to call him twice daily while I am at work, just to ease my mind. Life is stressful as ever, but I am trying to work on different things to organize us and ease as much stress as possible.

Until later….. Glad to be back in the blogging world of the DOC!!