Never too prepared

I have posted about this in the past but thought I would talk about it again. Some people like to keep spare supplies in the car in case of emergencies. Spare strips, meter, glucose, etc. I have never been a fan of that due to the car reaching extreme temperatures during the Winter and Summer. Most, if not all, diabetic supplies instruct you to store within room temperature. So since Vince is with me 99% of the time when he leaves the house, I thought it only made sense to keep the spare supplies in my purse since I don’t leave without it. He doesn’t drive, so he’s rarely out of the house without me. When he does leave the house, he brings his regular supply bag with him. I have decided to carry glucagon, a meter, some glucose, 2-3 spare test strips, a spare pump battery, and a few other odds and ends in my case. Since test strips do expire over time once you open a new pack, I take 2-3 strips out of his current pack and put them in mine and date it. That way I will know how long they have been in there and if they need to get thrown out, it is only a few. I do also have a note card stating that the supplies are for him, not me, just in case. I wouldn’t want them to think I was the diabetic instead of him. Luckily, we have not had the need to use the supplies for emergencies yet, however they have come in handy. We attended a wedding and he didn’t want to carry his bag with him all night. I already had my purse, so there was no need for him to carry around his bag anyway. He just tested with the supplies in my purse. He did need help at this particular instance, as the lighting was dimmed at the reception so it was difficult for him to see what was being done so of course I helped. With his vision issues and his nerve damage issues, he needs my help more than people realize. I think this is why I feel like I am the Diabetic sometimes. I am just glad that he accepts my help and that we work together. Normally we don’t even have to speak to get these things done. It’s almost as if it’s his brain and my eyes and hands sometimes. I always say his disabilities have seemed to have brought us closer. Maybe this is why. Because we both have to be on top of our game to keep him healthy. But I don’t mind. I don’t mind doing all this if it means he is healthy. We are a good team.

It's An Adjustment

For quite some time now, Vince and I have had a very strict routine. Ok, maybe more on my part than his, but we both stick to it. There have been many times when I would call him during the day and he didn’t answer the phone. I would then rush home to find him passed out from a nasty low. Then he began using the Continuous Glucose Monitor (CGM) and things improved, but I was still not comfortable to leave for an 8 hour work day without checking in. So we made a plan. A schedule you might say. I leave for work around 8AM. I call him between 10:00 and 10:30AM to wake him up and check in. I then call him again around 2:00PM-2:30PM before he lays down for his afternoon nap. We have found that by checking in throughout the day, we are both comfortable in knowing he is okay.

Now a few years later, we are still doing this routine however the serious lows have been a thing of the past thanks to the CGM alerting him since he no longer feels them. The lowest I have seen him recently is in the 50’s and he is able to get something to eat and drink before it drops any lower to where he can’t help himself. Normally, he is alerted early enough to where he takes action before he even gets lower than the upper 60’s. When I started my second job, I would call him on my break. Usually my shift is 4-5 hours long however in the past week or so, I have tried going to my second job and not calling him on break. Surely he will be ok for 4-5 hours right? Yes, for now we are in a good phase. We have it down to a science you could say. But my anxiety pipes in and reminds me that with Diabetes, anything can change at any time.

So now, we are going to try adjusting our schedule. Although Vince does like to hear from me during the day (since he is home alone everyday) the multiple calls do get a bit much. How much can we possibly talk about every 3-4 hours? You get the picture. So what we are trying now is one call during my 8 hour work day around 1:00PM. I did ask him to text me when he wakes up and when he lays down in the afternoon but that is only going to be temporary. He hates to text. It’s hard for him to see the screen. So I asked him to just text me a bunch of nonsense letters, just so I know he is alert and well. Then after a few days when I am comfortable, we will go to just one call a day. It’s so scary for me. But I just have to remember, it’s only 4 hour increments so it’s not too bad. It’s bad enough to worry about him, but when you add in my anxiety, the racing thoughts take over and you can’t think of anything except the worst possible case scenario. We’ll see how it goes!

A Few Updates...

I thought I would post a few updates on Vince’s health as well as my own.

Vince went to the audiologist for his second appointment regarding the hearing loss in his right ear. It turns out there was fluid in his inner ear and they were able to clear it out. Vince was terrified that the Diabetes had caused deafness which we learned it is a true complication of Diabetes when talking with the doctor, but he was very lucky to have finally gotten away from yet another complication.  As it normally goes with Vince, when something goes wrong, it usually turns out to be the worst case scenario, but this time it wasn’t! We were thrilled! He also had his 6 month follow up visit with the pulmonologist. The asthma has been under control with the Singulair he was prescribed and the doctor was happy with how his lungs sounded. He asked Vince to come in for a follow up 1 year from now. Normally, Vince’s follow up appointments for his specialists vary between 3-6 months so that they can keep an eye on him, so when he said 1 year, we knew this was a good sign and that he is stable, at least in this area. One more good appointment he had was with his Endocrinologist at the University of Penn Hospital. Don’t be confused. Vince sees TWO Endocrinologists. One for the Diabetes management and a second for the hormone management. Well, the tests came back and the HCG shots he has been on have worked and his testosterone is back up to a normal level. Although he will be taking the painful shots long term, he is happy to finally feel a little better with the hormones leveled out. This doctor ALSO said she would like him back in 1 year.

These are little victories, but looking back over the past 2-4 years, it is showing that some of his diseases and conditions are stabilizing. All of our hard work is paying off.

Now on to me. I have had a few issues myself lately. Having extremely bad stomach pains and upset after a meal once in a while has always been a norm for me. I just always assumed I had a sensitive stomach and since I am not too careful about what I put in it, then I guess that is what will happen, right? Well, a few weeks ago, I had horrible heartburn and pain in my side, around to my back. I went to the doctor and they said take it easy on the food and prescribed me some medication for the heartburn. A few days later, all was well. Then about two weeks later, I had one of my stomach episodes while I was at work. I will save you from the details, but this was the worst episode I ever had. I called my family doctor and after explaining my symptoms, I was advised to go to the ER. The ER doctor gave me some medication to help me feel better and took some blood work and advised me to follow up with my family doctor. I have since been referred to a gastroenterologist. I think what I will be told is Irritable Bowel Syndrome. So long story short, I probably need to eat more bland foods and watch what I eat overall. I have since been doing this but it isn’t without a struggle. I am a huge emotional eater. Happy, sad, angry, or anxiety ridden, I turn to food. It’s an adjustment, but I think I can keep it up!

Newly Diagnosed Feeling........

So much of the time, I feel like I am a newly diagnosed Type 1 Diabetic. Weird, right? Maybe that is why I feel connected with so many of the Type 1 Moms I “meet”  with young children. You see, although I have known my husband for 10 years, it wasn’t until the last 3-5 years that he really needed me to be more involved with his care. All of his care. I say 3-5 years because it was over time as his complications arose, that he needed more and more assistance to do things. So in the beginning when we first met, I learned what I did about who he was and about Diabetes, but didn’t give it much thought or concern. I knew he had this for a very long time and knew that he knew what he was doing. There was no need for me to worry or help in the sense I do now. I have said this before, but I think the day all of that changed for me was when he passed out at 2AM one night from a low and went unconscious in bed next to me. I awoke to him shaking uncontrollably. (I posted about this in a much earlier post) That was the scariest thing I had ever been through. I may have been involved before then, but that was my wake-up call and the one time that I can say truly changed my role as a Vince’s wife.

So why do I feel like a newly diagnosed Type 1? Well, I give shots, prepare the pump and CGM, inject the infusion sets and sensors, make sure I am home if I know his pump is almost out of insulin and he needs me to change his site, order medications and organize our “pharmacy”, watch for highs and lows while Vince is awake (due to the side effects of his neuropathy medications) AND asleep, give bolus’ in the middle of the night and coax food into a sleeping body during a confused low, check on him throughout the day to be sure he is ok, keep a spare meter and supplies in my purse along with Glucagon, make sure when we are leaving the house for an hour or for a weekend that he has his supply bag with him, and probably a lot of other things that have slipped my mind at the moment. It’s as if I am the diabetic except the needles and numbers are not my own.

All of this is new in a sense to me. Vince hasn’t expressed the need to connect with other Diabetics for support like I have. He has lived with this disease almost since birth so he doesn’t feel different. He feels normal (aside from the neuropathy but that is an entirely different subject) Not like me. Although it has been 10 years, it is still new to me. The care I am now giving him is new to me and I am still in the stage where I don’t feel normal. This life is not normal. The needles, the worry. The life threatening situations that are thrown at me (us) sometimes multiple times a day. It is not my normal. But truth be told, every day that passes, it feels more normal than the last.

I am so lucky to have Vince. He supports me and shows his appreciation for my taking care of him fairly often. We both know the situation we are in is not a good one and we both know it sucks. But I can’t think of a better person to be in it with. I love him more and more every day. I know that is so cliché but it’s the truth. He is my hero for dealing with what he does with such strength. He is truly my best friend, my teacher, my hero, my love, and so much more.

Difficult Situations Made More Difficult

As most of you know, a low sugar episode from having Type 1 can cause any symptom you can imagine from sweats, confusion, irritability, or fatigue, to the term that was used this morning by my groggy husband, “wigging out”. It’s always different in each episode. You never know what you are going to get. Now, if you look at the side effects from the strong Neuropathy medications Vince is on, a lot of the symptoms are very similar, fatigue or extreme drowsiness being the most dominant.

Now let me set the scene from earlier this morning:

4:00AM                Our cat wakes me up to let me know Vince is asleep on the couch and he may need help (yes, she actually comes to get me when she thinks he might need help) I go out to the living room to find Vince passed out on the couch. I wake him up and coax him to stand on his feet. I think I may have tested his BG too but I forget since I was half asleep. Once he got on his feet, he went to the kitchen to have two popsicles since he was on the low/normal BG line according to the CGM. He came to bed around 4:30 and was snoring before he hit the pillow. I fell back to sleep around 4:45 or 5:00AM

7:00AM                I am awoken by the CGM alerting to a low, along with my alarm clock. I snooze the alarm and ignore the low alarm figuring he would be fine for ten more minutes. I can usually predict when the CGM is giving a false reading. Don’t ask how, I guess it’s a 6^th sense. Kind of like when I could sense he was low before anyone else including himself before the days of CGM. Anyway, 10 minutes later, my alarm clock goes off again so I get up. I hear his low alarm again so I take a look. 46 is on the screen. CRAP. It’s not usually off by this many points, so he must be low. I quickly grab his meter, expecting a nasty result and what I get instead was 106. Whew, not 46. Good. Calibrate and move on. I start to get ready for work. The low alarm keeps going off but I ignore it.

7:55AM                I am about to leave to go to job #1 of 2 for the day and as I am about to leave the bedroom, he starts to sit up in bed and talk gibberish. First thing in my head was, “he’s low”. I rush over and try to talk to him to see if it is a real low or just medicated drowsiness. I test his BG one more time since this time it says 40 on the CGM. Again, it’s normally very close to his actual BG so being this far off was odd. Fingerstick, and 96 appears. I take his head in my hands and have him look at me and raised my voice to get him to snap out of whatever was going on. “You’re not low, your 96. What’s wrong? Why are you talking crazy? Wake up. Look at me.” He then says, “Check my BG” I said, “I already did. Your 96. Look me in the eye. What is wrong? You’re not low.” He then snaps out of it and says, “I’m not low, why am I “wigging out”? I asked him if he was tired. He said yes. That must be it. I told him to lay down and go to sleep. He falls to his side in bed and after I nudge him toward the middle of the bed so he didn’t fall off, I say again, loudly, “you okay now?” He said “yeah” and I leave for work.

So is it a low or a medication issue? Not always easy to tell. The lows I can deal with nowadays. A medication issue? Not so much. I have called 911 in the past because I wasn’t sure which it was. Turned out that time it was a little of both. One day I hope the neuropathy settles so that things will be a little easier…