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!