Trying To Keep It All Up

I am stressed. To the max. Again. It’s never ending. I am tired. Mentally and physically.

Very few people understand what I have on my plate. Some understand more than others. Some think they understand, but they really don’t.

Some think they understand, and actually do. But that list is very short.

I don’t want pity. I don’t want people to feel sorry for me. What I do want is for people to understand why I am tired. Why I have a short fuse. Why I over react and flip out over little things. I want them to understand my life so that they understand me. Understand us.

I work 40 hours a week. I keep a house going. Cook, clean, pay bills, and worry how we are going to keep going financially week to week and make it through another month. I make doctor appointments for Vince and myself. I keep track of all the appointments and make sure I have off work to get Vince there. I order medications and keep track of the inventory at our home. I worry and stress about how we will pay for them. I make endless phone calls regarding appointments, medications, and health insurance changes or issues. I am a full time employee at work 40 hours a week, but I am also a full time care giver at home 24/7. I am needed to help Vince with his mental wellbeing to keep his spirits up and keep him positive, as well as his physical wellbeing. I have to help him get dressed. I administer all of his shots and change out his insulin pump sites. On the rare occasion we get to go out to a restaurant, if he forgets his reading glasses, I have to read the menu to him. I don’t get a break. I don’t get to run away. I have to balance being a wife with being a care giver and not forgetting that I am a wife too.

When I get really stressed and worrisome, I like to sleep. Because well, when I sleep, I can rest my mind and forget about all this that I have on my plate. But that doesn’t always work. I am awoken more often than not AT LEAST once a night to help Vince. Whether he needs help getting to bed because the drowsiness of his medications, or he needs help because of a low sugar episode, or maybe he is in a lot of extra pain and needs help doing something. Sometimes he even falls in the middle of the night. His balance isn’t the greatest anymore due to the Neuropathy so add in the medicated drowsiness and this can get very tough for him; like getting to the bathroom or to the bedroom.

But I’m not complaining. Really, I’m not. I am just tired. Worn out. Exhausted from trying to balance life as a 29 year old who is young and wants desperately to have a family but in reality has to take care of a sick husband because that is the one person she loves more than life itself and can’t imagine giving up on him.

3rd Annual JDRF Walk

Below are pictures from our walk this year. The Sugar Free Floyd's exceeded our fundraising goal for JDRF!

Team Sugar Free Floyds

From left to right: Vince, me, Melissa, Adam, Walt, Rich, Brooke, Zach, Mom, Chris, Karen, Violet, Rory, Brian, and Kayla

 Vince and I

Adam and Melissa



Vince and Walt



Zach and Brooke



Chris and Mom



We were towards the end of the line. Look at all those people!



Tyler State Park, Newtown PA. Beautiful day!



Tyler State Park, Newtown PA. Beautiful day!



JDRF Funds at work!



I loved the back of this walk teams t-shirts!



At first I thought this was Medtronic's Lenny the Lion, but I believe this was a random person dressed up. It was pretty funny though.



Magazine Appearance

Here are a few pictures from the article on diabetes complications that Vince was interviewed for Diabetes Forecast Magazine. It was a big self esteem booster for him and I am very proud!

Why I Walk

I started walking each year for Vince and his brother John. The reason might be obvious. To find a cure! Well, to be honest, I personally don’t see a cure in Vince’s lifetime. Maybe I am just pessimistic but I just don’t see it. What I do see is advances in treatments. When Vince was diagnosed in June of 1980 at 6 months old, Diabetes care was just not what it is today. He didn’t even have a blood glucose monitor. He tested his blood sugar levels by peeing on a stick (much like the keytone tests some use today) The shade of blue would tell him if he was around a BG of 130 or 240. So getting a result of 172 was just not reality. That aside, I have no idea how his mom was able to get an infant’s urine out of the diaper and on to the pee stick… I have a feeling she just gave him his formula and an insulin shot at certain times of the day as the doctor directed and that was that. When he got a little older, he can remember having to pee on the stick to test himself. Then a few years later he finally got his first glucose meter and was able to see numbers. Still at that time, he just took shots at certain points of the day. There was little to no carb counting or ‘sliding scale’ taught. The ‘round the clock care and treatments that T1’s have today was just not there back in the 80s.

So how did we get to where we are today? JDRF Juvenile Diabetes Research Foundation (along with many others) The money we raise is put, not only to finding a cure, but to research and development of better technologies for care. Vince uses some of the newest technologies to help keep him as healthy and ‘controlled’ as possible and JDRF plays a role in making these devices possible.

I also use walk day to celebrate Vince. I like to recognize him and how much he deals with. I like to have that day be all about him. It is a day where the family can come together and let him know that he is not alone in this battle. I won’t lie. Having everyone there helps to remind me that WE are not alone too. This will be our third annual walk and each year our group and effort has grown. I would like to see it continue to grow to really make an impact, not only for JDRF, but for Vince as well. He deals with so much because of this stupid disease. He deserves a day (other than any old birthday) to be all about him (and his brother who also has T1)

Due to the complications and the distance (3 miles), Vince is unable to walk with everyone, but he will be there to enjoy the day. Someone always stays behind with him while the others walk. We will be walking this Sunday. I will post pictures!

It's Not So Simple

What affects Vince’s blood sugar:

Food

Activity

Illness

Stress

Physical pain

Pump infusion site

Pump malfunctions

Quality of insulin

Basal rates

Bolus ratios

Correction ratios

Extreme air temperatures

Medications

And sometimes….. the unknown… meaning, he will have highs and lows and have no explanation whatsoever as to the reason why.

So when someone asks if his Diabetes is “controlled”, we normally reply with a “yes”, but what we really want to say is well, it depends on the day, the hour, and the minute. A Diabetic can go from perfectly okay, to being rushed to the ICU in a matter of seconds. And if this were to happen, it simply means something is ‘out of whack’ and needs correcting. It doesn’t necessarily mean the person is not controlling their disease.

All of these things are what makes Diabetes such a difficult disease to not only live with, but to understand as well.

Who I Relate To

I often wonder why I relate to D-moms as much as I do. Just reading their child’s diagnosis story online, I am almost always choking back tears. But I don’t have a child with Diabetes. I couldn’t possibly know what it is like to have to inflict pain on your little loved one over and over as they scream at you telling you not to do it.

But I do relate to the parents. It’s now their new normal; my new normal. Sure, I have been dealing with this since I met Vince, 11 years ago, but it feels like a “newly diagnosed” situation to me. Although I have been dealing with this for 11 years now, I do not think it was until his complications arose that I put much thought into it. All of the sudden, it went from being in the background, to now, being in my face 24 hours a day. Now, I think about his sugars not only when he might be high or low, but what effect it is having on him. A high means more pain than he is already having. Or a few days of bad highs could cause his eyes to be in jeopardy even more since the retinopathy is present. Then I might see him have a low. A low has more immediate effects, but you still think about how it might be affecting his body long term, to have these constant highs and lows.

He now wears a CGM (continuous glucose monitor) He only began to wear this when he stopped feeling his lows. Yet another complication. He would pass out because he had no idea his sugar was so dangerously low. He even had a car accident due to not feeling the lows. So now he wears his CGM 24 hours a day. He never goes without it. It is a blessing to have access to this wonderful medical device. I have no idea where we would be without it. But, it is one more thing that was not present 11 years ago. One more thing that is a constant reminder of all of the complications.

The fact that I have to administer all of his injections (something fairly new for me in the grand scheme of things) is what makes that “newly diagnosed” feeling. These are things I have never had to do, before I met Vince and even after up until a few years ago. This is my new normal, just like the new normal a parent has when their child is diagnosed.

Another Low

Blood sugars have been a little off lately. Vince seems to be going low late night/early morning. Nighttime sugars have always been a struggle for him to keep at an acceptable level. That is one of the main factors that helped him to make the decision to try the pump again. No matter how he took the Lantus, he would go either too high (the majority of the time) or too low. With the pump, it is MUCH easier to control however it is rarely perfect.

Last night he had another low. That on top of the drowsiness from his Neuropathy meds resulted in spilled milk and yelling for my help at 3:30 in the morning. Usually I hear the bowl drop (as it has happened before) but this morning I didn’t. I just woke up to him yelling for my help. I went to the kitchen to find him half asleep, having a low, milk all over himself, the floor, and the table, and the bowl on the floor. All he says is “I’m weak” I didn’t see the cereal, so I asked him just to confirm that he ate it so I would know his sugar would be ok. He did. So I cleaned up the floor, the table, and himself and got him some cold water in hopes to stop his sweating that was resulting from the low blood sugar. I don’t remember if I asked him how low he was. I was half asleep myself. But I knew he ate enough. He was barely awake enough to get to bed so I told him to stand up and go straight to the bedroom and that I was going to get him a change of clothes.

Normally in this scenario, he says he wants a shower since he got milk on himself and he was sweating but luckily he didn’t. I say luckily because I am always scared to let him take a shower when he is that drowsy. So I got him to the bed, helped him change and got him to lay down. It took me over an hour though to fall back asleep. Just in time to get up for work.

We recently had a talk about how he acts when he is drowsy. I asked him why he gets so stubborn and tries to do things (such as shower) when he can barely stay awake. I expressed how frustrating this is for me. He compared it to being drunk. You don’t always know what you are doing and you don’t always listen to what people are telling you. That made complete sense. It seems that the conversation we had helped a lot. Somewhere in his mind, I think he was trying to be patient and listen to me this time because he wasn’t acting as stubborn as he normally does when the side effects kick in. He didn’t insist on a shower or getting another cup of juice or testing his blood sugar. When I tell him to go straight to bed, I know none of these things are needed. I take care of whatever things he might need at that moment since he can’t stay awake.

We are such a great team. We both try our hardest not to take out the situation on each other. Think about how you feel after taking NyQuil? What if you took two doses in one, and then had low blood sugar on top of it? It’s not the same thing, but the results of a foggy head from his medications and/or low blood sugar are similar.

The Ways I Help Vince

Vince has multiple complications from his Diabetes. He has developed Neuropathy, Retinopathy, Hypoglycemia Unawareness. Due to these complications, he has become disabled and needs my assistance to do many things a healthy 33 year old can do on their own. Here are the things he needs my help with and the complication causing the need.

Neuropathy – Pain, Numbness, and Muscle Weakness in all four limbs

·         I help put on Vince’s shoes and socks. This process irritates and pains his hands and feet.

·         Vince is unable cook any longer. He cannot feel temperatures so he burns himself very easily. While I am at work, he uses the microwave and sometimes the toaster oven to heat his meals, however that is the extent of his cooking capabilities at this point. I always make sure that he has meals that he can heat up while I am at work. They vary between a frozen entrée to leftovers from dinner the night before.

·         Due to the constant pain in his limbs, he is no longer able to help with chores around the house. He does however help with a few select things when his pain permits. He feeds our cat, picks up odds and ends that need to be put away, and can empty small waste baskets around the house. I take care of the other chores that involve either temperatures or a lot of handling such as vacuuming, dish washing, and laundry to name a few.

Neuropathy AND Retinopathy – Significant vision loss in his right eye. Able to see dark shadows only. Vision in the left eye has improved to approx. 20/40. Sometimes the need for help is the result of having both complications together

·         Due to the vision loss and the pain in his limbs, Vince’s driving is limited to an as needed basis. I do the driving 99% of the time. This includes anything from errands and shopping, to rides to his doctor’s appointments. Since he does still hold a valid driver’s license, he will drive if I am unable to take off work for a specific appointment, however with the help of FMLA, I am able to take him most of the time.

·         Vince takes multiple medications for Neuropathy, Blood Pressure, Cholesterol, Asthma, Vitamin D Deficiency, and of course Diabetes. These medications are taken multiple times throughout the day, all at specific times. We have a large pill box with 28 compartments which is a one week supply. Due to the numbness in his hands and the limited vision, I fill the container with a week’s supply of his medication to be sure everything is in the correct location. I also keep track of inventory of all medications and supplies to be sure they are refilled as needed.

·         Vince is on the Medtronic Revel insulin pump and CGM (continuous glucose monitor) The insulin in the pump is refilled and injected every other day. The CGM is changed out every 6 days. Due to the numbness in Vince’s hands and the vision impairment, he needs my assistance in preparing and injecting these items. He also takes a testosterone treatment which involves injections 3 times a week. I prepare and administer these as well, for the reasons listed above.

A Topic I am NOT passionate about, like I am with Diabetes

I don’t talk about my anxiety too often. I hate that I have it. Like I have a choice. But it has been a little on edge lately. I am not sure why. Maybe because Vince was so sick with Bronchitis for two weeks? Maybe my medication needs to be changed? Maybe no reason at all. Maybe it’s just the nature of the beast.

Even after 6+ years of dealing with this, I think I am still in denial. Like Diabetes, it is not a visible disease. But Diabetes is much different. You are required to manually work as your pancreas 24 hours a day and guestimate what your liver is doing in response to all of your hard work.

But Anxiety? It’s all in your head. Literally. You don’t have much control of your thoughts, do you? Think how frustrating it must be to be worried or feel uneasy but have no explanation on why. You even tell yourself this and say this is not rational. But it doesn’t help. So you take medicine. It helps, but not 100%. It seems to be a vicious cycle. Even worse is that I know anxiety is not rational. I consciously know this. But it feels like one side of the brain won’t listen to the other. It’s a struggle. The worrying about anything and everything. But just like Diabetes, it comes and goes. Good days and bad. It is just one more thing I have to learn to deal with. 

A Prayer

I recently noticed a framed prayer my friend/co worker had sitting on her desk and I absolutely love it. The words are so strong:

Serenity Prayer

God, grant me the Serenity to accept the things
I cannot change, the Courage to change the things I can
and the Wisdom to know the difference.

A Drowsy Low

It happened again. I knew it would. That is how Diabetes works. You think all is fine and then all of the sudden, it acts up and misbehaves.

Vince had a low this morning. A really bad Low. A 40 low. He doesn’t see many lows like that anymore. It was shortly before I got up for work. His CGM was beeping away. We both tend to ignore it at night right now because they are almost always false alarms. Well, Vince finally got up and realized he was low. He sat on the edge of the bed and I asked him what he was doing. He wouldn’t answer. I asked him again. And again. Still no answer. Just as I was about to lose my cool, he said he was low. I asked him if he needed help and he said no, he would be ok. So he got up and went to the kitchen. As soon as I saw the light go on and knew he was getting something to eat, I drifted off back to sleep. I woke up some time later (not sure how long, but it wasn’t too long) to my alarm clock for work. He was still in the kitchen. I went out and asked if he was okay. He said he was 40 but he had eaten and was alright.

‘Then why was he still in the kitchen’ I thought? Well, good old neuropathy medication at its best was doing what it does best. Making him super drowsy. He was nodding in and out of sleep while standing at the kitchen counter. In these moments, I have been known to lose my cool and get aggravated with him. He doesn’t even realize he is sleeping so when I tell him to go to bed he says right away ‘I’m fine. I’m not sleeping.’ When he clearly is. So I got him to the bed and he wanted to floss his teeth. ‘Ok, be patient Sandy’, I thought. He started rocking back and forth in his drowsiness state so I suggested he just lay down and go to sleep. Well, that he did but he took the toothpick with him. As he is picking his teeth, laying down, he starts to doze off. I wake him up and ask him to put the tooth pick down so he doesn’t hurt himself. He is upset and frustrated with me. He insists he is not dozing off. Then it turns into a fight. All I want to do is keep him safe. So he puts it down and I storm off.

It’s not fair. We never fight when he is in a normal state of mind. It is the darn medication and the side effects that cause tension. A fine line between me keeping my cool and keeping him safe and him trying so hard to take care of himself so he doesn’t feel like a child is a tough line to walk.

This is One of Those Hard Times

This is one of those times when my guilt gets the best of me. This isn't the first time and since medical issues are involved, it won't be the last. But when this happens, I feel such extremely guilt. Fear even. So many emotions. You are probably asking what on earth could it be.

As I explained in my last few posts, we have had a very busy few weeks. Between vince being sick with bronchitis and the photo shoot and the doctor appointments, he is flat out exhausted. Well, we are supposed to go with our friend to New Jersey for a day trip tomorrow but Vince said he is just to worn out and tired to go.

It's not even that big of a deal in the grand scheme of things. The rational side of me knows this.  The anxious and sensitive side of me doesn't know it. I have gotten so much grief in the past when Vince could not be at a specific event or gathering. My guilt takes over and I get so afraid people will be upset or even mad at us. I know there are rational reasons for him being limited. He does after all have more than a few chronic illnesses. I know this. But when other people don't understand the situation for what it is, it makes it so hard for me. I am a people pleaser. I just want to do what makes everyone else happy and approving.

Why do I let it get to me? I know the situation we have and what he is capable of. If other people don't understand, why does it get to me? I don't know. I am working working on it though. Working on not feeling guilty over so many things in life.

But I am happy to say that our dear friend, who is like a second Mom to me, is the sweetest, most understanding person I have ever known. I know she won't be upset but past experiences along with my silly guilty tendencies still make it hard when I feel like we are disappointing someone.

A Busy Week!

What a busy week it has been!

We started the week off with the photo shoot for the magazine.  Then on Thursday, Vince had his routine follow up with the pain management doctor (who we love!! He is great!). I have also been seeing him recently as well. It turns out that I did not escape the genetic back issues that run in my family. I have had strange symptoms off and on for about a year. The doctor, after seeing me a few times, thinks I have spinal stenosis. Last year, my left arm kept going numb and ached when I turned my head to the left. I went to see him and he sent me to physical therapy and gave me some exercises and it seems to clear up the discomfort and the symptoms. Well, in the last 6 months, I noticed my leg muscles keep spasming at night. It got to the point that I was no longer able to sleep so I went in to see the doctor again. Little did I know, the two things were related to my back. So at this point, the doctor said since he has an x-ray of my back/neck, that is good enough for now. He gave me pointers on how to sit properly at work during the day, and be aware of posture in hopes not to irritate it further. He also gave me some medicine to help the spasms. So we will see where that goes. So far, so good for the most part. We also had our counseling appointment last night. We go every 3 weeks or so. Sometimes we have a lot to talk about, sometimes like last night, we don’t. Things are good right now. If the stress picks up again, I am sure we will have more to talk about but our counselor is great. He is so understanding of the situation Vince and I are in and understand the stress that medical illnesses can cause.

The appointments continue today with a visit to a new cardiologist for Vince. His Endocrinologist does a great job at checking and controlling his blood pressure and cholesterol, however when he was recently at an Urgent Care facility for his Bronchitis, a chest x-ray showed an issue with his heart. They are pretty sure it was related to the Bronchitis, but we are not taking any chances. I am sure it is nothing, but you can never be too careful. Especially when your family has the worst possible genes when it comes to heart disease.

Finally, we are ending our busy week with a day trip with our dear friend Barb to her shore house in Ocean Grove, NJ. It is only just over 1 hour away so Vince should fair okay in the car. They are having a huge Flea Market in the town so it will be a fun day!

Next week we have two more routine follow up doctor appointments for Vince and then things should settle for a little while as far as appointments go.

Magazine Appearance!

A month or so ago, I was contacted by Diabetes Forecast. They had apparently found Vince and I through my blog. They are writing an article about the complications of Diabetes and wanted to feature Vince. He set up a phone interview with a writer from the magazine and they discussed his complications. Everything from how and when he was diagnosed with the complications, to how he is living with the disabilities today.

At that point, we were not sure how much of his phone interview would be in the article. All we were told is that the article will be in the November issue of the magazine. Then, we were surprised by another email from the woman who asked if they could send out a photographer for a photo shoot with Vince. We were so excited! Within two days, we got him a nice new outfit, a new hair cut, and cleaned the house in preperation for the shoot. They came out and did a few shots for the article. I took some behind the scenes photos:

I asked the photographer if he could take a picture of us with my phone and he actually took one with my phone AND with his camera. I am not sure if it will be in the magazine though since the article is not about my role in his care, but we will see.

 These are a few photos showing him walking for excersize. Although he normally walks around our apartment and in the yard, they asked that we pick a more scenic area so we found a local park with a walking path.

These last two are showing how he uses his stationary bike for excersize and to keep his legs mobile.

We still do not know how little or big this article is going to turn out, but nonetheless it is very exciting. Whether it is just a small picture and information about him, or an entire article on him, we are not sure, but we will share once we get the issue!

A Passion and A Dream

I remember when I was little. I was watching the movie "The Baby Sitters Club" I remember seeing one girl in the movie who's character had Diabetes. There was a scene with her hiking while on a date with a boy, and she got low and needed to eat. That was the extent of any explanation of Diabetes in the movie, but I remember it caught my interest. I thought, "wow, she has diabetes!" and for some reason I took an interest in it. I didn't think about it or do anything with that interest from that point on.

Now, as an adult who manages and deals with a Diabetic husband, learning about Diabetes care and management has become a passion of mine (along with Crocheting!) I often think back to this movie and wonder if I always had this passion and maybe I just didn't realize? Why did I take an interest in that character? I don't know.

Why is it my passion today? I am a caregiver by nature. I am nurturing and caring and that comes out in Diabetes management. I strive to make sure Vince gets the best possible care and the best possible resources in order to keep up that care. I think he feeds off this as well.

I never went to college when I graduated High School. High School was difficult for me as I am not a fast learner. I had very little interest in college and had no idea what I wanted to do with my work life. Looking, back, I know what I would do. I would love to be a Diabetes Educator. I recently looked in to this field, knowing I would fly through the schooling with the knowledge I already have, but was disappointed to see that a Diabetes Educator is actually a sub category of nursing. Nursing school is expensive and is not easy. If I ever made the choice to go to school, I would definitely chose the medical field.

When I was young, I was terrified of needles, blood, and anything involving the two. I would cry for days even BEFORE I got an immunization. It's funny how people change and their fears change. I would never have guessed in a million years that I would want to go into the medical field. That it would be my "dream job" For now, I am content with working at Comcast. We have extremely good benefits and it is a very large company to feel stable in. Well, as stable as you can get nowadays in this economy.

But should the opportunity arise, I would definitely consider becoming a Diabetes Educator, or "CDE" Certified Diabetes Educator. I feel I would have a lot of compassion and understanding and be able to empathize with the patients and really be able to help educate them and help them lead a healthy Diabetic life.

It's a dream. You never know what the future holds. Maybe one day!

A Look Back

I was reading through some of my older posts and found this one:

http://lifewithadiabeticspouse.blogspot.com/2011/06/day-in-life-of-diabetics-wife-sandy.html

It is great to be able to go back and look at how things may have changed or might still be the same. I don't have the need to check in with Vince as much as I did 2 years ago in this post. He hasn't had many low episodes lately so I feel safer leaving him for longer than 2 hours without checking in. I still do my 10:00 - 11:00 AM call in the morning and then he will either text me or I will call him in the afternoon before he lays down to nap.

But as always with Diabetes, nothing is ever "under control" and if it is, it can change by the hour. So if he starts having lot's of lows again, then the calls and check ins will be a must. Taking it just one day at a time.

It's That Time Again...

It is that time again to fill a round of prescriptions.

The list this time? 15 vials of insulin, 540 muscle relaxers, 90 pills of blood pressure meds, and 90 days of asthma pills. All 90 day scripts. It's a lot. A lot of medicine and a lot of copays. This however is only SOME of his medicine. Just what happened to need refilling right now.

Most of the medication comes from our local CVS Pharmacy. I am not a fan of CVS however with our insurance, to get the best co pay price, we are forced to go there. If I hit them on a good day, the few people that know what they are doing are there and it goes smoothly. Today I called to see if everything was in stock and I got great service. It's nice when they know you AND know what they are doing LOL I will have to place a Medtronic supply order soon too. That is mail order from Medtronic directly but they are great and UPS shows up just a few days after ordering. So, here we are! Time to stock up again!

He knows, He knows

Left this morning for work. Saw a large amount of insulin on board. He said he was up earlier and had cereal. And he is sick. It made me nervous. I called him every two hours up to lunchtime. He was fine. Sometimes I forget he actually knows what he is doing. It is the fear. The fear that some days Diabetes has a mind of it's own and doesn't do what you think it will. But he was good. And so was I. Now we need to get rid of his nasty cold in his chest...

A Stubborn High

I wake up for work. Vince’s blood sugar is in the high 200’s. I know this is a stubborn high so I give him a massive bolus of 10 units. 3 hours later he is still in the mid 200’s. Diabetes has a mind of its own. Maybe it’s caused by stress this time. Maybe not. You can never quite know when it comes to Diabetes. We are doing a site change when I get home so if it doesn’t come down by then, maybe that will be the trick. Oh Diabetes, how I don’t love you.

Time For Some Fun!

I am excited to be planning a few trips in the upcoming days and months. We could really use some time to get away and relax. We haven’t been on vacation since our honeymoon, 5 ½ years ago to Las Vegas, other than a few trips to the shore.

A good friend of ours has a house in Ocean Grove, NJ. She invited us to come along for the ride one weekend and stay as short or long as we would like. It was so sweet of her to offer. She knows we could use a relaxing day and we have never been there so it sounds like it will make for an nice day. This part of the shore, she said, isn’t like the normal boardwalk and beach. It’s an older town with lots of shops and restaurants. I will have to go online and see what is there! Sounds nice! Best part is I don’t think I will have to do the driving which is a break in and of itself. I have to drive all the time when we are in the car, and sometimes I want to just put my head back and relax! It’s the little things…

Also, if plans work out, we are going to go to Tennessee to visit some family near Nashville. We don’t get to see them often so it will be great to get away for a long weekend and visit with them. We will also get to sightsee in Nashville as well! They are aware that Vince has limitations and already said whatever we need/want to do, just let them know. They are some of the sweetest people we know. We feel very comfortable visiting them knowing they will be understanding if we have to cut a day short and relax back at the house or any other inconvenience that might arise due to Vince’s limitations. We have had family in the past that were not as understanding about his limitations and inconveniences, so we are excited to visit with them knowing we will be able to fully enjoy ourselves and our time with them.

Of course there is a draw back. We are in Pennsylvania. They are in Tennessee. That means either a very long car ride or a plane ride. Although I was a frequent flyer while growing up, the older I am, the more I hate the idea. I actually avoid flying at all costs. But that leaves the car ride. Due to Vince’s Neuropathy, he can’t take long car rides. About 2 hours one way is his max and that is pushing it at that. So I will be getting myself on a plane. Again, I have flown lot’s in my day. When I was young, I lived in Texas and would visit my family in Pennsylvania multiple times a year. I flew alone each time, from the age of 10 to 17 years old. It was no big deal to me then. But as I got older, I got more scared. Vince however never had his first flight until he was about 24 or so. We went with a friend of his to Texas to visit my family and a friend they had down there. He loved it! He has only flown a handful of times since then and he still loves it. Me, not so much. We are planning our trip for November which is over 2 months away and I am already anxious, but the short flight will be worth it to see family and get away for a few days.

We haven’t flown since Vince started on his insulin pump and CGM so that will definitely be different for us. We will have to pack even more supplies than before when he was on shots. I am thinking a small suitcase will have to be used just for this purpose. I know, crazy, isn’t it? Then you have the whole security issue at the airport. When he was on shots, it was no big deal. We showed all of the supplies, medications, and needles at the security check point and they waved us right through. This time however, he will have the pump and CGM attached to his body so it won’t be as easy. Hopefully, if we plan well, it will go smoothly.

But needless to say, I am so excited to go away!!!! I can’t wait to take tons of pictures and spend a few days doing nothing but fun things!

So Here We Are...

So where are we at these days… I have been wanting to post but it has been hard to come up with the right words.

Things are relatively calm. Calm for us at least. In the D world, we are currently focusing on cutting carbs and insulin in hopes of some weight loss, but it’s a long road, as any weight loss plan is. Vince’s Endocrinologist is great though. He is so reasonable. He saw about 8 pounds of weight loss and said how about 10 more by our next visit in 3-4 months. Vince said he thought that was a good place to start. I agree. So we have been focusing on low(er) carb meals and seeing how that helps.

My anxiety has been better due to a change in medication however I still worry. I don’t think the worry will ever stop. I am human after all. And female on top of that! LOL! I have been learning to lean on my supportive friends more, one of which is very near and dear to my heart. She has been amazing. She realized I need someone to just ask me how everything is once in a while. Just knowing someone is thinking about me is a huge relief. Relief in knowing I have one more person besides my brother in law to lean on in case of an emergency. I am not one to ask for help. I feel like, I just need to do X, Y, and Z and just get it done. It’s not that hard, I think to myself. But it catches up. I get stressed. Over whelmed. Then the simple tasks seem daunting to even think about let alone doing them.

We have been working hard to build a support system and I think it is finally paying off. We have the best Therapist.  We see him every few weeks. He is a great match for the two of us. He has the same sense of humor and really gets where we are coming from. Sometimes our visits are just chatting about the Phillies and asking how we are doing. Other times, if we are having a hard time, we talk it out. He has been a great person for Vince to talk to and open up to. Vince doesn’t open up very easily. But between the therapist and his brother, Vince seems to be doing good at expressing himself. Of course, if he is quiet, I am quick to think something is wrong. Why is he quiet? What is he thinking? But I am trying to take a step back and look at the big picture to see if it’s me being overly concerned or if it is a real issue. Usually, nothing major is wrong, so I am learning. Learning how to deal with all the different stresses we have going on and learning how to lean on the people I do have instead of focusing on the people I don’t have.

“Cleaning House” is tough. I think everyone comes to a point in their life where they have to reanalyze the people in their life and who is making it better and who may be “toxic” It is a very long, sad process but sometimes you have to do it for your own happiness. I am learning to find the people in life that see us for who we are and accept us without judgment. People that want to be there for us for support and people who care if we are having a rough time. It’s a long process but I am starting to finally feel good about it.

Well that is about all the updates. Just trying to take one day at a time as usual and trying to see the positive in life as often as we can.

Meeting A New Friend!

This week, I finally met my first D-Momma that I met online, in person!! She lives very close to me and we found out that we not only have caring for a Diabetic in common, but other (medical) things as well. I was so excited to meet her! I love the DOC!

Online Thirty One Party for JDRF

Our JDRF walk for this year has been set! October 27th. To raise money for the cure, I am doing an online Thirty One Party with Hallie Addington from The Princess and the Pump! http://www.theprincessandthepump.com/

25% of sales from this event will go directly to our team! If you are interested in some great products for a great cause, click here https://www.mythirtyone.com/forms/frm_event_my_events.aspx and start shopping during the next two weeks!

Thank you everyone!

Finally!

For those that have been following my blog, you know I work two jobs. A full time job plus a part time job. There were some changes at my work that allowed me to quit my part time job. I am so happy. I stuck it out for 10 months. Part of me feels like I failed. That I should have been able to do it longer, but the other part of me is proud that I juggled it for 10 long months. The two jobs on top of my other responsibilities was not easy. The house was not always clean, Vince was alone a lot, and my temper was short on some days, but I did it and I would do it again if I had to :)

He Tries and Doesn't Give Up

Vince has been trying to get more exercise lately. It is so hard for him though. Either he is in too much pain, or his balance is off, or just the mere thought of knowing the soreness to come afterwards are all obstacles he faces in trying to stay active. Some days its all he can do to just get through the day, let alone exercising. Well, he did it. He joined a few old friends for a game of stick ball. In my head, I was wondering if this was a good idea or not. I even said to him, can you handle it? He said he thought so. I didn't want to tell him he wasn't allowed to go. I didn't want to be THAT wife, so I stayed quiet. I put lots of glucose tabs in his bag and stressed to listen for the low alarm since he has been running on the low side.I went to work and he went to the church parking lot. The same place he played as a kid. Well, he apparently fell 3 times due to balance issues and issues from his leg brace. I asked him why he fell so many times. He said he thought he could do it. He didn't want to give up. And that was a good answer. Although he knows it was dumb to practically throw himself against the pavement, he didn't want to give up. He is a fighter. That is certain. 

A Day In The Life Of A Type 1's Spouse

Note to self:

Do not dig into the Diabetes supply bag without looking unless you are ready to get stabbed viciously with a lancet. 4 days later, my poor thumb is still healing.

A few thoughts running through my mind:

I wonder how the A1C is going? I have seen some highs and some lows but I am not good at judging them in the big picture...

Vince is going to be giving a speech to a class of students. I am debating if he should silence his pump/CGM. I will be with him so I am thinking he should...

We have a new budget we are following...Is this next doctor's visit calculated in? Boy, these co pays are adding up...

Why did we get a surprise delivery from Medtronic of a new pump clip? Should I return it? Nah, we could use a spare. I wonder if we will get charged?

Vince recently visited the ER and found out he has a small kidney stone. He was told he should follow up with a urologist to be sure some of his symtoms he was expierencing were not related to something else. We went to the appointment and were pleasantly surprised to find out he was in good shape and was told to come back in 6 months. Good news for once! Whew...

Don't forget to call in that refill!!!!

I know I'm forgetting something that I need to do...

Boy, filling out the social security review paperwork is such a pain in the tush...Must they really be this detailed? This is a bit much...

What Was It Like Before....

What was it like before Diabetes?

What was it like before complications?

What was it like to NOT see him in pain all the time?

What was it like when I didn't hear cries from the pain from the one person that a simple cringe would break my heart each and every time?

What was it like to grab food without thinking about Vince's bolus even though I was the only one eating?

What was it like before, when I didn't know the first thing about health insurance because I didn't HAVE to?

What was it like when I first met Vince and didn't worry about his disease?

What was it like to go to work and not worry if he was alive and okay where ever he was that day because I really had no idea how dangerous this disease was?

What if you were prescribed a medication but the side effects were life threatening if you didn't take it the exact way you were supposed to, but that way changed every day? Would you take the med? Think about it. That is insulin........

What was it like before I was judged for worrying about Vince, all because people "don't get it"?

What was it like when he was working?

What was it like when he was working and I would have to coax, urge, and beg for him to pull to the side of the road or to the 7-11 to treat a low while he was driving?

What was it like before the CGM? When I was his human CGM "weak-o-meter" as I was called.

What was it like to be so scared about the glucagon needle?

What would it be like if Vince wasn't diabetic?

What would it be like to not worry about Vince if he happened to miss the phone when I called?

What would it be like without the retinopathy, neuropathy, and hypoglycemia unawareness?

A Look Inside...

A look inside a Type 1 Diabetic's wife's purse. Tums and Chapstick for me...and Diabetic supplies for him...

Anxiety Plays A Bigger Part Than I Thought

Last week was tough for me. Vince was sick with a nasty cold and was extremely drowsy. That started on Sunday. On Monday morning, I took him to the doctor. By Tuesday, I had completely lost it. I was so stressed, I cried all day at work. I must have called my brother in law at least twice last week in tears. I think my supervisor/friend got a tearful episode as well. By Wednesday, into Thursday, I was starting to think a little more clearly. I realized that although I have a lot on my plate, it's not as bad as it could be. I think my Anxiety and my constant worrying magnify our situation. The thing is, I don't always acknowledge this until after the fact. Better late than never I suppose. By the time I calm down, I get so embarrassed and apologetic at whoever got the wrath of my tears.

I need to start acknowledging that although I have a lot on my plate, that is no question, that I also have a severe Anxiety issue. I need to remember that if I am having an exceptionally hard day or week, that I need to take a step back and think about the real issue at hand. Is it all being overwhelmed by my care taking tasks, or is it an Anxiety attack. Through it all, last week I was visiting with some great friends and talked about my issues with them more than usual. I think we have more people in our corner than I realized and it's a great feeling.

These Are The Days I Feel There Is Too Much Weight On My Shoulders

It's Sunday night. Vince says he thinks he should go to the doctor. His ear hurts. It must be an infection. So I call my supervisor, who is the most understanding boss (and friend) I could ask for. I let her know I will be in late tomorrow morning. No problem she says.

Monday morning. I wake up around 8:30AM on my own. I haven't been sleeping very well the past few nights. I wait until 9AM and call the doctor for an appointment. We get an appointment for 11AM. Around 10AM I go to wake Vince up and let him know about the appointment. He is having a very drowsy morning. He gets up and gets dressed only to sit down and sleep on the couch while I put his shoes and socks on and get him ready to leave. We leave soon and he dozes off once again in the car. He was so drowsy that at one point he woke up during the drive and thought I was driving to my work. When we get to the office, we have a seat in the waiting room. He dozes off again. Soon we are taken back to the room to wait for the doctor. He steps up on the table and has a seat. I take a seat in the room as well. He sits there, falling in and out of sleep as I watch him hoping he doesn't literally fall off the table as he sways back and forth in his sleep. I hear the doctor coming towards our room so I quickly wake him up so she doesn't see. She checks him out and gives him a script and we are on our way. We went to the pharmacy next door and then got back into the car, where he promptly dozes off again. Once we are home, he gets back into bed, I put drops in his ear and off snoring he goes back to sleep.

After I have some lunch, I am off to work for a half day. I am left feeling stressed out. The thing that makes these situations even worse is that I try to wake him up during the "dozing off" periods and his usual response is either "I'm okay" or "I'm awake" Now both of those just frustrates me even more. No your not okay, your about to fall off the table, or where ever you happen to be because your sleeping sitting up. Also, no your not awake. I can see you sleeping, head and body bobbing back and forth as you do so.

So to end this venting of a post: I HATE NEUROPATHY MEDICATIONS AND HOW THEY CHANGE WHO HE IS. This is not him. Days like this, I feel like I lost him in there somewhere and I just want my normal Vince back.

Today's Conversation Got Me Thinking

There are a lot of people around me that do not know my story. Coworkers for example. I do not go around broadcasting my troubles. But if I get into a conversation and it comes up, I am happy to share. I almost feel like it helps explain why I might look stressed or be a bit wacky some days! When talking to people about my life and situation, they always have the same reactions: You are so awesome! How do you do it? Your going straight upstairs. Did his disability start before you were married? yada yada yada I get awkward with this. I don't know how to reply. I don't always feel as strong as they make me out to be. I don't always think I can keep going. How DO I do it?

Thinking back, the majority of Vince's disabilities began to happen while we planned our wedding in 2007. It started a bit before that time, but that is the point when I remember everything really crashing down around us. His pain went from a little to a lot and his vision went very quickly; almost overnight. It was such a scary time. I remember sitting with Vince outside the first emergency eye doctor's appointment in the car when we left and we just cried. We bawled. We had no idea what was going to happen and how we were going to handle it all. We had just been told that BOTH of his eyes were in serious trouble and the doctor did not give much hope at all. He referred Vince to a specialist and in not so many words, said good luck and that specialist was Vince's best chance he had. We were scared to death. I remember going home and we went straight to bed. No dinner. No nothing. Straight to sleep. I remember thinking, if I just go to sleep, it will all go away. And it did. Untill I woke up and literally said to myself, "No, it wasn't a dream. This is real" I remember working and sleeping for the next few days. We didn't even tall family or friends at first what was going on. We were terrified.

Now, remember when I said the vision issues happened in the middle of us planning our wedding? It wasn't until years later that I realized this when someone asked me when it happened and proceeded to praise me. I never understood why they praise me. I still don't. To be completely honest, I NEVER once in that process can remember thinking maybe we should stop, not get married and end this. I honestly can't foresee having that thought if you are truly in love with someone. How would you want to leave them when they need you most? Doesn't that go against what marriage stands for? It's just not rational to me. Sure in my weak moments I ask myself how I can go on. How can I keep doing this. That it's just too hard. But once I calm down and think clearly, those thoughts go right out the window. I would never dream of deserting Vince over a medical problem. God knows, he would never do that to me. If I even have a sniffle, he sends me straight to bed with a hug and kiss to get my rest.

So what keeps me going? Well, some days, it feels like nothing. It feels like it's all too much and I just want to stop. But those days are few and far between. There has to be a good amount of bad days in a row for me to start thinking like that. So, I don't have one clear answer but I can honestly say that Vince is one thing that keeps me going. Although, most of my stress comes from his illness' he is the one that is by my side, wiping my tears, and telling me it will all be okay. He is the only one that can say it will all be okay, and I actually believe it. It's the truth. And knowing I have that and can rely on that is all I need to keep me going.

Old Language Vs New

"Technical Terms"
Insulin Dependent Diabetes
Juvenile Diabetes
Type 1 Diabetes
Type 2 Diabetes
Diabetes

"Not so much"
The Bad One
The One That is Worse
The Pill One
The Adult One

It's a wonder the public is confused. I would be too; there was a time I was. Some of these are true terms for the disease and others are really just how people describe them. I find that the older generation uses the incorrect language more so than the younger. I also find that people who have had it for many years, usually Type 1, sometimes also use the old verbage, such as Juvenile Diabetes. I even find myself using that term sometimes, just to avoid confusion.

I find I don't mind explaining the differences to people. I figure it is one more person that will know. Spread the knowledge, right? I think that the people that have Type 2, along with the non Diabetics, are the most "confused" or "ignorant" Ignorant in a lack of knowledge sense. Not a rude or mean sense. If you talk to a Type 1 Diabetic, there is no explaining what so ever. Is this the doctor's not explaining the condition enough when people are diagnosed, in particular with Type 2? Not sure, but hopefully people will know more and more.