Meet Trixy!

Meet Trixy. Our family cat, aka our furry faced baby.

I myself have always been the cat lover between the two of us. I have always grown up with cats, and brought two cats into the relationship when I met Vince. Years later, they both passed away from old age, and I decided I couldn’t live in an empty house and had to get another cat. Vince isn’t (or wasn’t ;) ) a cat person but he agreed the house felt empty after the two had died. So about two years ago we adopted Trixy. She was about 1 years old at the time. I would have liked to have gotten a kitten, but I know how silly and crazy kittens can be. I used my better judgment and knew the little claws would wreak havoc on Vince’s nerve damaged limbs. So I was looking for a young cat and came across Trixy. When we met her, she came onto my lap, and went right to sleep. I just knew she was the one. I looked at Vince and he said “okay” Again, he isn’t the cat person, it was me.

So now two years later, here we are. Vince stays home weekdays, while I am off at work. He has his little routine to keep himself occupied. Apparently, Trixy is part of his routine. She follows him from room to room, lays in “her spot” on the couch and watches tv with him, and even accompanies him to bed for his afternoon naps. They often even play during the day. She is the most playful adult cat I have ever seen. She loves to have her belly rubbed and will let Vince or I do this for as long as we will sit there and continue. One thing that clued me in to their new bond is the fact that she is so in tune with him. When he is having a bad pain day, she will sit next to him, and lick his hand and arm forever. Yes, she licks him for minutes, like 10 mins straight. She will lick my hand but only for a few seconds at a time. Not like him.

I am so glad he has her. They keep each other company during the day. I truly believe in the pet therapy that adult centers and hospitals use. I see firsthand how it helps to keep people going.

Is your Endo your family?

What a day. Vince has been sounding like he is wheezing in his breathing for a few weeks now, and we haven't really addressed it. I guess we have bigger things to worry about? I suppose so. 

Well today it really sounded bad so I took him to see our family doctor. This is one doctor that he doesn't see very often. He just goes to the office for his blood work and flu shots etc. We just figure, with the 6 specialists he sees frequently, there is no need to see the family doctor. Surely, one of these other guys would pick up on something that might be wrong, right? Well, apparently not. Our family doctor knows us pretty well, since I go there too. When she saw it was Vince as the patient she said, "my! Haven't seen you in about 3 years since you got sick with bronchitis" (btw that was a week before our wedding day lol) I spoke up and explained we actually didn't think it was necessary since he is constantly under a doctors care but she brought up a good point to that. A family doctor is someone that can take all of those doctors someone sees and be the "one in charge" and make sure nothing is missed in the patients care. This makes complete sense, I just never really thought about it. We always think of his Endo as his family doctor. He takes his blood pressure, put him on meds, checks his cholesterol, put him on meds, and checks his major organs. All of this every three months. This seems even more thorough than a family doctor visit would be. My question is for other Type 1's who see an Endocrinologist. Do you consider them your main doctor, your family doctor? And are they as thorough as ours?

So back to the breathing issue... Turns out yes, he was wheezing and also has post nasal drip so of course this means more meds. I am hoping however that maybe this is seasonal. Or if not maybe it will go away on it's own after it is under control. Vince hasn't had asthma in the past. Just some wheezing with a cold and such. So we will see. Until then, inhalers are added to the medicine drawer.

One great thing about going today is he found out that he lost some weight! Yay! Hope it continues since it may help the nerve pain a little bit. Not sure if it would but one can only
hope :)

Selective Hearing

I wanted to share a super short story with my DOC buddies and I completely forgot! I am not sure why this is, but when Vince's CGM beeps to alert him of one thing or another, he tends to tune it out. Probably because the darn thing beeps so much that we have named it "Mr. Beeps" yes we are big kids at heart. It could also be because its not very loud. I would like it to be able to be set at the "annoying alarm clock blaring at you as you jump up in bed when it goes off" level so we hear it more so we don't sleep through it. Anyway, when I normally hear Mr. beeps and I tell him "your beeping!!!" sometimes he heard it and already knows why he is beeping and other times he just didn't realize it. I have become very alert to it for obvious reasons. Gotta stay on top of this stuff :) So we went out to get lunch on Saturday afternoon and as Vince was waiting for the food, I went around the corner to get our drinks and find a table. As I am doing this I could have sworn I heard Mr. Beeps. I thought for a second and then realized there is no way I could have heard it. There were lots of kids running around and I was no where near Vince. So once he came over to the table and sat down, I said to him that I thought I heard him beeping but I was probably imagining it since I was too far away to hear it. He checked just in case and what do you know...he was in fact beeping. I have no clue how I heard this! I have actually been known to have bad hearing. I am the one that says "what" to you 10 times before I can figure out what your saying (annoying I know lololol) But apparently, I have trained my ears to listen for that sound at all times. It's amazing what you do without even realizing it. All in a day of being with a diabetic :)

It's ALL unpredictable...

So it seems, not only is Diabetes itself unpredictable, but so are medications. All medications have side effects but they don't always go away after while. I have said before how most of Vince's medications cause drowsiness. When it normally hits him, he will go lay down and take a nap and then once he wakes up, he is better and more alert. Mind you, he takes the same medications at the same time everyday. But for some reason the drowsiness hits him harder some days more than others. This evening is one of those days. I have no idea why this is, but he just can't keep his eyes open. While dinner was in the oven, he told me he needed a site change, or pump change as we call it. Of course I feel bad about it now, but I actually got annoyed. Not at him, just at the fact that it needed to be done right at dinner time. I asked him if it could wait until after dinner, but it couldn't. He only had 10 units left in the reservoir. So I got the supplies and did my part to set up the site as he took off the old one and prepared the pump for the new reservoir. In the midst of it all, I had to constantly wake him up because he kept falling asleep. Once the site change was done, we ate dinner. Well, at least he tried. I had to tell him to wake up about a dozen times. Then he finally said that he couldn't eat anymore because he didn't have an appetite. (another side effect he is struggling with) so now he had bolused for dinner and couldn't eat....great. So we agreed the best thing to do was a bowl of frozen yogurt to make up for the uneaten portion of dinner to be sure he covered his carbs he accounted for. As I am typing this he is starting to doze off again so I think it will be an early night to bed for him. Poor guy...

Why don't they GET IT?

How come no matter how much you try to explain, people just don't understand? They don't understand the BG checks at 2AM, the highs and pumping insulin into you through a machine desperately trying to get it down so you feel better, the extreme lows and horrible effects it has on the body, the eating when you don't want to, the 24/7 painful shocks in the limbs, living in fear of things that normal people don't even think twice about, and trying to just be happy all the while sitting home everyday because you can barely do anything anymore, let alone trying to work. It frustrates me that people can't understand this. I know it's hard to understand when you don't live it day to day but it still frustrates me. People just don't understand the effects that diabetes and other medications has on people. Some medications do things to you that you don't like, makes you act a little crazier and nuttier than you may normally act, but you know you have to stick it out because it is the only thing that is helping.

Well this is the story of my husbands life, starting a few years ago. Sure, people say they understand, but they don't. They don't understand my husband and they don't understand me. My fears and worries that I have for him. I guess I can't expect people to understand it, but part of me does. Part of me wants to scream to the world, our life sucks, but we make the best of it. We do as much as we can to keep a smile on our faces day after day no matter what is handed to us. I thank God everyday that we have each other. Sure my life would be very different if Vince were not in my life, but the same goes for him. We would be very different people if we didn't have each other. We are each others, other half. When one is pulled down, the other one can always pull them back up. I am so thankful for that.

I just wish people could understand us a little better, but I know that is not the reality of the Diabetic and Neuropathy world. 

Counting my blessings

I am so lucky. Yes, that is right, lucky. You are probably thinking, how in the world are you calling yourself lucky? I don't want that kind of luck! No thank you! Well, I am talking about lucky in the diabetic, pain everyday, stress 24/7, and still remaining sane type of lucky. I am realizing through the DOC (diabetic online community) that diabetics have horrible mood swings. Seeing all of these people who deal with a diabetic loved one who just goes from calm to crazy 2.2 seconds. Well, that is the complete opposite of my good ole' hubby. Seriously! 100% the truth. He is so calm and so patient with my nagging duties. It takes a heck of a lot for him to really get mad. I am the one who loses it over simple things. I tend to take out my anger, about the medical issues, on him; something I am working on. Sure he gets annoyed, don't we all? But for him to really lose it, well he has to really be pushed. I think this is why we get along so well. We are literally each others best friend. I think that is so important in a marriage, to be friends AND lovers. I can't imagine a marriage without my best friend. I just don't see how that would work. So yes, I am lucky. Lucky to have a happier marriage than I ever thought possible, despite all of the crap we are given. And I truly believe that since we are such a good team, team effort here, that it will last for a long time. We have actually noticed our marriage grow stronger as more problems are handed to us. So yep, counting my blessings everyday for that.

Come On Spring !!

The last few weeks of spring and winter weather every other day have wrecked havoc on Vince's nerve pain. A few days feeling mild pain, then it was 65 degrees outside and sunny and he had horrible pain! I checked the forecast and sure enough a storm was headed our way. This winter has been the worst so far. His pain has been worst than ever and we finally came to the conclusion that the weather plays a very BIG role in how he feels. Needless to say we either need to move to move to the Bahamas or live in a bubble through the winter :) I am hoping and praying that once spring hits for good, that he will get a slight bit of relief. This up and down every day with the pain is so hard to watch and makes it so hard for him to function. A lot of times, by the time the pain let's up a little bit, he is so exhausted from the continuous excruciating pain, that all he can do is rest and sleep while he feels a little better to try to recoup from the episode and get ready for the next. It's a vicious cycle but amazingly he powers through :)

Type 3 ?

I absolutely love what I just read. I was on dlife.com and was reading about family and friends support to a diabetic, and how important and crucial it is to the diabetic. How it helps the diabetic stay positive, and helps them to stay motivated and in good health. They referred to the caregivers as "type 3" I know this is just a term that dlife uses, but when I read it, I loved it! I have said before how I forget fairly often that I am not the diabetic in the house, but as the caregiver, you quite often feel like the diabetic! Not that you would ever want to have this disease, but it is so great that caregivers are being recognized and referred to as Type 3! Now we have a name to how we feel! Though we are not diabetic, we certainly feel like it at times! Here is the link. It has some great caregiving information, whether you care for an adult or a child.

http://www.dlife.com/diabetes/lifestyle/diabetes-caregivers?gclid=CLf7u7Cl3acCFeM85QodeHNC_w

Night Vision of a Type 1

I thought I would share this funny little story with the rest of the diabetics out there. I am sure you can relate. For those of you that use a CGM, you know you have to calibrate it throughout the day, and if you forget, you will get that beeping reminder (at least on the minimed Revel you do) So it was about 5AM this morning and I awake to the CGM beeping away. When looking to see what the alarm was trying to tell us, it said "meter BG now" so I shook Vince and woke him up and said "honey, meter BG". He grabbed his black bag from the night stand and started to open it. I asked him if he was going to BG in the dark and said he was going to try. I knew with his eye sight (and from past experiences) that he wasn't going to have much luck seeing the drop of blood, or even the test strip for that matter so I said I would so it for him. So I got a test strip out of the case, and turned the light on from his pump/CGM to use as a flashlight. I put the test strip near the light, inserted it into his meter and proceeded to prick his finger that he had positioned in my direction. Then I turned on the "flashlight" again, positioned it on his stomach, pointing in the direction of his finger, and used the light to see the test strip and the blood on his finger. Once I got the sample, I brought the light towards the meter to read the number. Then I just calibrated the CGM, pulled out the test strip, tossed it on my nightstand, put everything back in his bag and went back to sleep. Talk about laziness? Wouldn't it had been easier just to get up and turn on the light. Yup but I guess we both figured why do that when we can just lay in bed and use the handy dandy flashlight :)

Pink Pump Case?

Have you ever forgotten that you are not the diabetic? That it is really your child or spouse? I think we as caregivers get so wrapped up in helping the diabetic in our lives that we forget that we are not diabetic ourselves. I find when I am at a doctor’s visit for myself and they ask my history, I have to think twice before blurting out Vince’s medications and medical history. At times I even feel guilty for eating that brownie or ice cream I craved, thinking it is bad for my sugar or glancing at the carbs on my food before opening my mouth. I think it is normal when your life is consumed by all things diabetic. I was even looking at a website recently at pump packs for Vince’s pump. I saw a really neat one and then realized, wait, that is pink. I don’t think he would appreciate a pink pump case. Let me look for an Eagles or Phillies one. Or maybe he just wants plain black. I forget that it is not me, it is him. Is this because subconsciously I wish I could take away his diabetes and nerve pain? I said to Vince once, “I wish I could take all your pain and diabetes for a day, and give you a break. I’ll wear the pump and deal with everything and give you the day off.” I wish sometimes I could do this for him, but he quickly said, “I would never ever want you to experience from the inside what I am going through. I will gladly deal with it so you never have to.” It breaks my heart for him. I don’t know how he is so strong. I should be the strong one for him, not the other way around. I think one of the reasons his diseases have brought us closer instead of pushed us apart, is because we are always trying to make the other one happy. Worry a little less. Put on a strong face for the other to prove to each other we will get through it one more day.

Cash for strips!

Here is a great site I found and thought I would share it with everyone. They will purchase your unused, unopened, not expired test strips! I know when switching meters you may have boxes of strips laying around that you haven't used, so this is great! They send the test strips to uninsured or underinsured people in need.

http://www.cashpaidforteststrips.com/

http://a4.sphotos.ak.fbcdn.net/hphotos-ak-snc6/199043_191332094235512_102622733106449_429033_7430627_n.jpg

WARNING: MAY CAUSE DROWSINESS

Drowsiness, fatigue, sleepy, lethargic, tired…These don’t even begin to describe the side effects Vince is having from all of his nerve pain medications. From nodding off while eating to nodding off while trying to take a simple glucose check, it is never ending. The poor guy is so tired he falls asleep sitting upright in his desk chair. Throughout the day, I call him to remind him to take his meds. If I call him and catch him in his sleep, sometimes he doesn’t even hear the phone or he doesn’t know who I am for a few seconds. Talk about a deep sleep!

We recently visited his neurologist for a checkup and he is continuing to increase Vince’s Topamax. This is a new medication they are trying to see how much it will help his nerve pain. I am hoping that we are at the worst stage right now with the side effects. Since they are increasing the meds right now, and haven’t begun to decrease any, he is getting a whole lot of medication at one time, all of which say WARNING: MAY CAUSE DROWSINESS. I am hoping that when they start to decrease some of the others, the side effects will let up. This doctor is giving us a lot of hope in finding the right combo of drugs that will hopefully help him. It is a slow process but this is the first doctor we have found that has new and different ideas and seems to know the disease. From increasing one medication over a few months time, and then decreasing others, all while trying to control the pain and the side effects, this is getting very stressful for me to watch. Throw in the fact that through it all, I am still supposed to be able to tell the difference between weak reaction babble talk and dopy medicated babble talk! It is so hard to just sit back and watch as he groans in pain, knowing I can’t do anything to make it go away.

Notice how much I am using the word hope in this post today? Well, I just noticed and I guess my writing is really reflecting my (along with Vince’s) state of mind. We have lots of hope, that one day (hopefully soon (there I go again lol)) he will start to feel less pain and be a little more comfortable. One day he won’t have to brace himself 24/7 for that shock that is about to come on in his leg, or that rain storm that is expected in the week to come, knowing it will throw his body for a loop. This is no way for someone to live and it’s not something that someone should have to watch a loved one go through.

Healthcare System, Good or Bad?

This weekend Vince went for a haircut and was making small talk with the woman cutting his hair. Somehow they got talking about his diabetes and he mentioned to her that he wears a pump. He was showing off it's neat gadgets and the cgm and the woman said that her 13 year old niece is diabetic. When Vince asked her if she wears a pump too, the woman told him that her brother's insurance doesn't cover the insulin pump or cgm supplies. When he was telling me this I was completely mad. How can an insurance company deny someone the option of using a pump? Sure, you will be fine without it, and just use syringes or pens but to be denied coverage for something like this is absolutely ridiculous! It makes us feel so fortunate for my great insurance to not only cover everything he needs without any question, but to cover 90% of all costs. It is so sad that insurance companies control so much of how you take care of yourself. This kinda leads me to think about the free healthcare that other countries have. Is free better? Well sure if your talking about money, but I would rather not live in a country with free healthcare. I don't believe Vince would get the high level of care he has today. He may not have the most up to date gadgets that make his difficult life a little easier. Also, what would have happened if we lived in a country where surgery was free, but you had to be put on a waiting list in order to have something done? When Vince needed his laser treatments and surgery on his eyes, what if he was put on a list and it ended up taking to long? Sometimes you don't have time to wait. I would rather pay the high cost of healthcare, than have his (or my for that matter) health suffer because of waiting on lists.

Just Thinking.....

I have been thinking a lot lately about this new blog I have started. It has really helped to relieve me of the emotional stress I have of caring for Vince's diabetes. I enjoy reading everyone's stories, even though they are the parents of the diabetic, not the spouse. It reminds me that we all live in the same diabetic world. The world where we are afraid to go anywhere without a snack or glucagon in our purse. Afraid of the pump and sensor beeping in the middle of an event. Afraid when eating out, the food will arrive to late after he has already bolused. All of these things go through my head 24 hours a day and I feel like me and Vince are so alone in this unfair diabetic world. I never knew there was such a thing of a Diabetic Online Community. What I never expected when starting this blog, was all of the friends and family that would actually be reading and following it. (mostly thanks to the Facebook posts I'm sure lol) So much recently, have I come across family and friends that say, I have been following your blog and enjoy reading it. This is not something I thought a ton about when I started writing it, but it kind of feels good to show people a little bit of what it is like in our world. How my and Vince's mind works so differently and focuses on so many different things than the rest of the non-diabetic world.

Schedules

I recently began to realize how scheduled our lives are. Not that we have a lot going on, and we don't even have kids to run after, but it seems we are always busy. Times that we are not busy, I find myself trying to mentally catch up. From Vince taking his medication for his nerve pain, 3 times a day at specific times, to changing his insulin pump and sensor every few days, we are constantly trying to remember to take care of everything. Even the everyday things that other people do with out thinking, are scheduled for us. Everyday when I arrive home from work, it's right to the kitchen to get dinner made and carbs counted so Vince can bolus his insulin for the meal. Then it seems that every Saturday morning, we go grocery shopping and drug store runs along with any other places we might need to go. We try to schedule our errands on the weekend around how Vince is feeling physically. Normally we go out late morning and by the early afternoon we have to make our way home, because he has normally had enough and is usually in pain. In between our daily diabetic care, we have multiple doctors appointments to schedule and attend. It can get to be a lot but when we don't have things to do and errands to run, we try to stay home and relax as it get pretty physically and mentally tiring. I  know a lot of the other bloggers have diabetic children, not spouses, but I am wondering if everyone else seems to have as much of a scheduled life as we do.