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.