My 3 day Pump Experience!

Being a caregiver to your spouse is not an easy job to take on. It is emotionally, physically, and spiritually exhausting. There are so many things that go into it. The care giving alone is a hard job, but when it is your spouse, a separate set of struggles are brought with it. Your spouse is supposed to be the person who helps you keep a home, build a family, and be your other half in this crazy world. Can Vince do these things for me? Mostly, yes. He is my emotional rock. He keeps me sane in this crazy world. Having him there to go home to at the end of a long day, having him to hold me when I just need a hug to make it all better, and having someone who can make me laugh through my tears are all things that I wouldn’t change for the world. He even helps keep us going financially. Without his social security, we would not make it on our own as my income alone is simply not enough to live on. I try to remind him of this whenever he says he feels bad that he can’t work and support his family as the man of the house should.

I don’t like to admit it too often, but when your spouse is disabled, it can leave you feeling alone at times. Even after all the things I just mentioned that he does for me, our marriage is still different. It is not your traditional relationship. Care giving brings a whole new set of issues, stresses, expense, and emotional toll that can be hard to understand to people on the outside looking in. I myself live with Anxiety and ADHD and it gets the best of me way more than I would like to admit. I struggle to keep myself in check and to have patience with Vince day after day. I can’t feel his pain or his numb limbs. I don’t know what it feels like to have to use canes and a walker at the age of 34. I do not feel the endless needle sticks. I don’t have to keep track of carbohydrate counting as closely as he does and worry about feeling crappy if I am high or low. I do not have to accept that I can’t work, or go to church, or see the family whenever I feel like it. Most of these struggles Vince deals with are things I can never take on and feel for him. I wish I could take all these things from him so he could have a normal life, but I can’t, and that is what makes it so hard for me to be understanding and patient day after day and frustration kicks in on my part more than I’d like to admit. As much as I do know more than anyone what he goes through hour by hour, I will never know it first-hand.

This is why I decided to wear his insulin pump. He just got a new, upgraded pump so we now have two and it was the perfect opportunity for me. Being with Vince almost 24/7, I thought I understood. I thought I knew why people get diabetes burn out. I am always reminding him of things he needs to do to keep going. I even have to do all his injections for him. Due to his complications, I am extremely involved with his day to day care and safety. I thought I surely understood. I live it with him and watch his blood sugars as closely as he does, right? Well, wearing a pump 24/7 for 3 days gave me a chance to get a glimpse into what he deals with. It is such a small part of all the things he has to deal with day after day, but it is something I can do in order to see what he is going through. I don’t think a lot of people understood why I decided to do this. I tried to explain but again, no one quite understands our life as a whole.

Now that I am at the other end of the needle, I understand a bit more fully than I ever thought I would.

With the help of our awesome pump trainer and nutritionist, I loaded up the pump with saline and prepared my belly. I was scared to push the button. I have done it a thousand times on Vince. I can do it with my eyes closed. But now the needle was going into ME! She placed her hand near mine and asked if I could do it or if I wanted her to push the button. I said I could do it. Heck, if it hurts, I rather hurt myself, right? I took a deep breath and “Click!” I did it. I laughed a little when I realized it didn’t even hurt. How silly I was. I finished attaching the pump and tape and kinda looked at her and Vince like, that’s it? Wow. I really thought that was going to hurt! So I clipped it onto my shorts and went about my day in amazement that I hardly noticed I had this machine attached to my stomach! I always call Vince a robot because of the devices he is hooked up to. It makes us both laugh, and we need all the laughter we can get to stay sane, so if that means acting like kids, then so be it. All day long I kept saying to Vince, “I am a robot like you!”

Over the next 3 days, I tested my blood sugar and counted carbs just as Vince does and used the pump to dose each meal. I tested myself about 3-4 times a day. I have to admit that I did cheat a little bit. At times, I can be a grazer. I will eat a little bit all day long. I quickly realized this would not work if I was truly a Type 1. So yes I cheated. I ate from time to time and didn’t test myself or bolus. The least favorite part of the 3 days was poking my finger. Although I got used to it more so by the third day, it hurts! No wonder Vince relies on his CGM so much. It’s not the right way to do things, but it works so I can see why he does it. I can no longer get mad. I’d do the same thing if I were him and I knew it was reliable enough to do so.

So the things I found difficult over the 3 days:

Overall the pump is not in the way however night time and changing clothes is something to get used to. Not a big deal though. Vince gave me tips to make it easier

Counting carbs is more tedious than I thought. Vince normally does most of that

Strips strips every where. No wonder these things are all over my house. I picked one up to throw it away and lost it by the time I walked to the trash can!

Packed my lunch for work and had to take a mental note of the carbs I was putting in baggies etc. if I were actually on insulin, I would have made a note and put it in my lunch bag with the exact numbers. Vince does most if not all of the carb counting and guesstimating and he has been doing it so long that he knows most foods, but it is still hard to guess with certain things. Especially a casserole. Or something where you don’t have the packaging.

If I were diabetic, the pump would be a must. I couldn’t even tell it was there. Having to carry insulin and needles everywhere and injecting all day long wouldn’t cut it. With the press of a button on the pump, everything is done. Quick and easy and never forget insulin at home. One needle every 2-3 days. So much better! Not to mention the control down to the hour you have vs multiple daily injections.

I think I will do it a few times a year to keep it fresh in my mind. Anything I can do to have more patience with him and be a better caregiver and wife, I am willing to do it.

A New Journey

A journey that I never thought I would attempt has become a reality.

I AM GOING TO COLLEGE!

I struggled in school. Academically and socially. I was the quiet one with just a few friends. Luckily, I went to a great high school and the kids were mostly from decent families. I was extremely quiet and shy and borderline nerdy, but I was never teased. I hung in the background and was overlooked and I didn’t mind it being that way. Academically, I struggled. I was a B/C student who knew I would only get my A in an elective class. I never understood why school was so hard for me but I accepted it and moved forward. When I graduated from high school, I was so glad it was over and knew college wasn’t for me. School was hard for me. Now that I had “done my time” I surely wasn’t going back voluntarily.

Jump ahead 12 years to 2014. This year I turned 30 and I finally got my answer. I finally knew why school was so hard for me.

I have ADHD.

I am told by my doctor that I have always had it and it went undiagnosed.

Looking back now, it all starts to make sense.

My comprehension is poor. No matter how hard I try to concentrate and pay attention, I just couldn’t do it. Read a book or text and take a test on it? Yeah right. My teachers must have thought I was the laziest student around! There was no way I could have read the material and still failed the test so miserably. I will admit, it even got to the point in my later high school years that I wouldn’t even read the assigned book if I thought I wasn’t going to understand it. I failed the test and moved on. I always did well on home work and projects so that balanced out the failed tests in the end.

Then you have the nice teachers who let you watch the movie in class instead of reading the book. Most students would do pretty well on that test, but not me. If I didn’t fall asleep, I couldn’t follow anything that was going on. To this day, I can’t follow movies without asking my poor hubby what the heck is going on. Lastly, one test I don’t think I will ever forget was an open book History test. I don’t remember which grade it was, but I will never forget how dumb I felt and how much of a failure I felt when I got that test back. A 30% on an open book test?!?!?! How is that possible??!!

Now that I have a diagnosis and treatment, I have the confidence I needed to go to college. I would love to go into the healthcare field, however, I am finding that a lot, if not most, of those programs require clinical hours and I can’t figure out how I would fit that in while working full time day hours. For now, I am a business major. I am tossing around a few ideas of which direction I can go. I would love to still incorporate the healthcare field so I am considering counseling or human resources but I have yet to decide. I still have plenty of time. At this point, I am just going to start with my core classes and see how that goes.

This is a huge step for me, but I am very excited and can’t wait to see what the future holds!

It's Starting To Make Sense

I recently turned 30 and it made me think about all that I learned in my 20’s. I don’t know if this is the same for all people, but I learned so much about myself in my 20’s. More than I ever imagined I would. I have grown emotionally in ways that I am very proud. I have learned to stand up for myself and my feelings. This is something I have struggled with since I was little. It will always be a struggle, but I have come so far. One of the things I learned about myself and recognized is that I have Anxiety and ADHD. I was pretty aware of the Anxiety in my early 20’s. It is something that runs heavily in my family so it was very easy to spot. Once I finally went to the doctor, it was confirmed and I began treatment.

My ADHD story was not as short though. This is something that I have suspected for the last few years. Without realizing it, I had learned to live with it and adjust my behaviors and actions and even make excuses for it. It wasn’t until my therapist mentioned it, that I thought my suspicions might be valid. Once I became more aware of it and saw a doctor for treatment, all of the symptoms made sense for once. Even though my symptoms are still present (since I only chose to take the medication as needed, such as a busy work day or on a school day) learning to pay attention to them has helped me in many ways. My poor self-esteem that crept about was even a symptom to my surprise.

I learned that I had this since I was young and the symptoms were just dismissed. I struggled in school to get B’s and C’s. That’s just Sandy. She is a B/C student. I assumed I was not smart enough for college. I am “a blonde” and I am “dense”. That’s just Sandy. I would forget my head if it wasn’t attached. That’s just Sandy. I can’t pay attention to anything it seems. Again, even though this is the major symptom, that’s just Sandy. I would struggle to sit through a movie at the theatre, especially one that didn’t capture my interest completely. I would twist and turn in my seat, count how many minutes till the end, or even just give up and go to sleep. I figured that was normal. It wasn’t until very recently, I thought to try my new ADHD medication for a movie, and boy, when I say it was like night and day, that is an understatement. I actually enjoyed the darn movie and it was a long one. I normally dread long movies. Once again, things started to make sense!

I will always have ADHD and Anxiety, but I am learning that by controlling as much as you can in your environment, you can control the diseases quite a bit. I have accepted the fact that I will most likely have to take medications of some sort, for the rest of my life, however I have learned that if I eliminate as many of the stressors in my life as I can, doing so can decrease my symptoms and in turn decrease my medication dose.

In recent years, I never would have agreed and didn’t agree when people told me this was possible; changing your environment to ease the symptoms. It’s not an easy thing to do. It’s a life changing decision to remove yourself from stressful people and stressful environments, but it has proven to be a necessity and has worked for me! It will need to be something that I continue to do throughout my life, but if I stay aware of the triggers and are able to change them, I am realizing that I DO in fact have some control over these diseases.

Having anxiety, I have always struggled with accepting that I live with this condition. I hate that I do not have control over my thoughts and feelings and hate that I have this disease. Not having control over my brain has made me feel like a major failure. Now, with the help of therapy and making changes in my life, I learned that I have a little bit of control. Knowing this makes it much easier to accept my disease and deal with it.

Confirmation and First Holy Communion

My confirmation name is Elizabeth and Vince was my sponsor! Enjoy the pictures!

The Falling FInally Got The Best Of Him

Well, he got his crutches, and uses them a lot, but mostly outside of the house. But three days ago, in the middle of the night, he fell in the bathroom again. (Wasn't using the crutches) He fell and fell hard. Ended up with an extrememly swollen foot and ankle and was sure he broke it.

I called the Podiatrist for an X-Ray. They know us well, so they got him in right away. Turns out he didn't break anything, but did tear a ligament. So, now he is in a walking boot for 10 days until his next check up. The walking boot is helping a lot but he says he can't use that with the crutches Grr As long he is careful, that is all I care about. I am really hoping no surgery will be needed, but we will know more once the swelling goes down. Lot's of ice for now.... and once this is over, he will be using at least one crutch all the time!! (doc said he could use 1 or 2 at a time) Thanks a lot Neuropathy!

And a quick shout out to my brother in law, John. He doesn't read this blog, but he has been a huge blessing to have around and has been a huge help with my taking care of Vince. It was just what we all needed and is working out FANTASTIC!

Also should mention that I have, for the first time ever, enrolled in college!! Should start this fall! More on that later in another post.....

My Communion and Confirmation are this Sunday! Pics to come...

Changes Physically, Mentally, and Spiritually!

I suppose I need a post updating what is going on as it has been quite a long time since my last post.

Towards the end of last year, I had mentioned to Vince that I had an idea that would help us financially and I wanted to know what he thought about it. I suggested that maybe his brother John would like to move into our second bedroom in our two bedroom apartment. Since he works part time and is on disability due to diabetic complications, his money has been tight, just as ours is. We discussed this possibility for a while before making any moves, as it is a big adjustment to share your home with someone else, even if they are family. Vince decided the idea wasn’t so bad and could really help not only us, but his brother as well, so he brought up the topic to him. John seemed to like the idea and said he would think about it. I then began to realize there would be more positive outcomes other than the financial help. He would be there with Vince a lot of the time when I can’t be. The thought of having someone else around to watch out for him while I am at work 40 hours a week would be great! They could help each other! A few short months later, he officially moved in and things have been going great.

In case I haven’t mentioned it, we have a FANTASTIC therapist. I am a firm believer in shopping until you find just the right one for you and that we did. This guy has helped Vince tremendously. We see him together about once a month and usually just check in. He is not only great at guiding us, but he gets our humor and is all around just a great match to our needs. While in a session a few months back, he mentioned that it seems I may have ADD. I have often suspected this of myself but always ignored it. I explained to him that my biggest issue is not being able to concentrate while driving. I am like a little kid, constantly looking all around me, instead of looking at the road. Not good. We left his office and I didn’t think much more about it. Then, months later, the topic came up again during a meeting with him and he, again, suggested I see someone about it.

I finally took his advice and made an appointment with a doctor who deals with ADD. During the first appointment, I was asked why I was there and what my symptoms were. I explained my lack of concentration, especially while driving. He then asked about my concentration during school. I explained to him my reading comprehension has always been poor and I just struggled through. I always explained that looking back, this was a big reason why I never felt I could attempt college. He then said something that really made an impression with me. He said he could tell I was very smart and I probably just have a learning disability and that I should go to college! That made me feel very good. As the conversation went on, I explained how my memory is poor (but I attributed that to stress) and how I seem to always be doing 10 things at once. I explained that it is hard to turn off my brain at night to go to sleep, but again contributed that to stress. He said it sounds like I have always had ADD and due to my moving from school to school during my childhood, it was never properly diagnosed. He said he would like me to see his psychologist to be tested. I agreed, as this is something that I really want help with due to the driving issue. About a week later I saw the psychologist and filled out a 60 question questionnaire and he took my background. He said he was surprised I was never diagnosed as it is pretty obvious that I have difficulty with ADD. He suggested I try medication to help since I was so concerned about my attention on the road and referred me back to the doctor to prescribe something. When I met with the doctor, I explained I didn’t want a stimulant like Ritalin and he informed me that there is a newer option that is not a stimulant and that I could try that. The only drawback is that it can take up to 2 months to see the full effects. So that is where I am currently at. It has been just under a month and I will see him soon for a checkup.

Another, non-medical related update, is that I am in the process of becoming Catholic! They say sometimes you just know when you are ready to do something. That is kind of how this came about. While sitting through Mass at Vince’s old high school during the day he was there to give his motivational speech to the Freshman, the idea came to me. Maybe because it was a Mass for the kids, maybe not, I liked how the priest provided such a positive outlook on life. The positivity really hit me and I thought to myself, maybe I would like to go to Mass more often. If I get this much out of it each week, that could do wonders for me emotionally and spiritually.

I decided to contact the priest at the church where we got married. He was so inviting and explained the process to become Catholic would be quite easy since I was already baptized. He explained he could meet with me and we can go from there. I asked Vince if he would go with me and he was happy to. So I met with the priest and he gave me a book that explained the Catholic religion from start to finish. He said we can go through the book and spend about an hour a week and at the end, I can get my first Holy Communion and Confirmation and I would be official! We have had about a total of 5 meetings and I will be confirmed in just a few weeks! I am very excited to do this for myself. I am surprised to see how much I get out of going to Mass once a week and am glad I made this decision.

Lastly is the most recent update is regarding Vince’s Neuropathy. He has been falling quite a lot lately and complained of a “buckling knee” to the doctor. After an X-Ray and MRI on the knee, everything came back fine. The doctor explained that most likely the Femoral Nerve has probably been affected by his Diabetic Neuropathy. This is a large nerve that runs from the waste, down the leg. It can cause the knee to buckle and general weakness in the leg. He suggested physical therapy to strengthen the leg muscles and an EMG to confirm the damage. He did say though that since this is such a large nerve, it tends to get better over time. I hope he is right. In the meantime, he has prescribed Forearm Crutches for Vince to use to help him walk better and hopefully avoid falling so much. Here is an example of what they look like.

 

Well I think I covered everything! I shouldn’t wait so long next time!

Happy New Year

It’s been a little crazy lately with the new year and new insurance changes. I tried to prepare for the changes as much as possible, but that didn’t stop it from getting a little hectic for us. Three of Vince’s medications were no longer being covered, so we had to plan and figure out the next best thing for him. The only one that I was really stressing about was his 24 hour pain medication. The issue was that we had to find out from the doctor what other medication might work for him. That was the easy part. Then I had to find a pharmacy to get it from. Anyone who needs pain medication knows it is not the easiest to find in stock at any pharmacy. Due to the old medication coming to an end on a Saturday, we had to get the new medication ordered and filled before then so that he didn’t go without. It was a little stressful, but thanks to his brother helping me while I was stuck at work, we were able to get the medication ordered and picked up. Once he started the new medication, there was a bit of a transition period. His pain spiked quite a bit for a few days, but it seemed to settle back down once the old medication was out of his system and the new was in.

We are still seeing our therapist, however we have shifted to about once a month or so. He is awesome!! He totally understands us, and help us to remember to always do what is best for US. Sometimes it is hard for me to remember that one. Do what is best for us. It’s Vince and I against the world! I am a big people pleaser. That gets hard. Especially when you have as much going on as I do. I can’t please everyone, as much as I try. So having someone to remind me to always take care of me and Vince first and foremost is great.

We also continue to lean on the people around us. Vince’s one brother, Walt, continues to be a tremendous person and one Vince (and I) can count on for support whenever needed. Just knowing he thinks of us often is so great. His other brother John has also been great lately as well. Also, my good friend and ‘2^nd Mom’ Barb continues to be there for me without fail. She amazes me and I don’t know what I would do without her there to keep me going and show me that it will always be okay.

Same Same

Ever meet someone that was just like you in a certain way, and you just click, like you have known each other for years?

This is kind of what it is like to meet other spouses of Type 1’s. Last year I met a local woman about my age who is married to a Type 1 Diabetic. We live about an hour away from each other but have managed to meet up for lunch to talk, visit, and vent to each other. The first time we met, it felt like we knew each other for years! There was no awkwardness during the first meeting. It was like she knew what I live with and I knew the same for her. We then met up with the hubby’s for lunch a few months later and the four of us, again, got along like old friends. We ‘talked’ the same language.

About a month ago, I was contacted by a student in NYC doing her doctoral dissertation on spouses of Type 1 Diabetics. She found me through my blog and asked if she could interview me. Of course I was happy to meet her. She herself happened to be a spouse of a Type 1 as well! Again, once we met, we talked and chatted like old friends who completely understood each other and each other’s lives. It was amazing. We made plans to keep in touch.

It is so exciting to meet other spouses. They understand what it is like to be woken up by the CGM throughout the night. They understand why I call Vince throughout the day to ‘check in on him’ They get it! They get me!

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.