Overwhelmed

I think it is interesting how my DOC buddies understand me more than most of the people in my “real life” This is why I chose to vent to you guys. I am feeling SO overwhelmed these last few days. Vince and I have so much going on, diabetic and non diabetic related. I have chosen not to write about these things yet, but I know you guys will understand the strain medical issues can put on you. I am just tired. Tired of worrying. Tired of thinking ‘what if’. Tired of having to managing it all with Vince. Tired of seeing Vince in pain, exhausted and miserable. I hate thinking like this: ‘why me, why us’ but lately Vince and I have both said this through the tears a lot more than usual. We try to be good people. Why us? Why must we deal with all of this all the time without a break? I try to remind myself, and Vince, that it could always be worse, but even that gets hard to believe after awhile. I know it’s true though. I know it could be worse, but that doesn’t make me feel better. It just gives me the strength to get through one more day and be positive for Vince one more time. It’s just so hard. What’s next?

A Sore Throat or Two

What a day today. This morning it was pouring rain outside. Vince and I went grocery shopping and had a trip to the drug store for some prescription refills. It wasn't until we were in the car that Vince mentioned it was pouring rain and he wasn't in horrible pain; just the normal everyday pain. That was good to hear. Maybe we are getting his pain under control? Or maybe he was just having a decent day despite the rain? We finished grocery shopping and came home. He had a low reaction on the way and stuffed his face with soda and starburst when we got in the house. He watched some tv and tried to take a nap since he hasn't been sleeping well in the last few days and said he was very tired. He couldn't sleep though. The rain seemed to catch up to him and he was yelling in pain while in bed. I went in to see what was wrong (even though of course I knew what the yelling was about). I got him his pain medicine along with his mid day medication and he sat up on the side of the bed to take the pills. Once he was done, he looked at me standing in front of him and passed out and fell forward into my arms. I grabbed him and yelled at the top of my lungs to get him awake. A few seconds later, he came to and I checked his blood sugar. 245. Okay so a little on the high side, definitely not low, so I asked him why he passed out and he said it was from the pain. I just stood there hugging him as I realized I screamed so loud when he passed out that I now had a sore throat. (the first of the afternoon) So I laid in bed with him and we had our normal tear filled talk about how difficult our life is and wondered how we get through it and stay happy. A few minutes later we got up and had dinner. After dinner, Vince went to the kitchen to wash his hands. I was in the living room crocheting away my stress from earlier. It dawned on me that the water in the kitchen sink had been running an awfully long time, but I quickly told myself to quit being paranoid and to leave the poor guy alone. A few seconds later I hear screaming in the kitchen. My first instinct was that he was in pain, but I quickly realized it wasn't that type of scream. I leaped off the couch and found him in the kitchen and he said he fell asleep at the sink with the hot water on and burnt his hand. As I got him an ice pack and put the cold water on for him, I leaned over and put my head in my hands. I said out loud, I knew something was wrong. See honey, this is why I am paranoid all the time. Because I need to be. He understood. So he went and relaxed on the couch and about 15 minutes later he went to the kitchen to get his inhaler since he was wheezing a little. As he stood there I saw his body swaying. He was falling asleep again. I screamed at the top of my lungs at him (since I didn't think i could get to him in time) until I scared my cat off my lap and startled him enough just before he fell backwards to the floor. (sore throat number two) I quickly went over to him told him to put what was in his hand down, and took him by the hands straight to bed and demanded he go to sleep or at least stay in bed. He gets way to drowsy from the medication and not sleeping well on top of it is just no good. Hopefully he can get some rest and feel better. It's days like this that frustrate me so much.

Am I different?

Do you ever feel different from the people around you? Like you live in a different world than them? I am sure my DOC buddies know exactly what I am talking about. This week I started in a new office with Comcast (where I work). Tons of new people (huge office) and only a small handful of the people in my old department that came with me. In the last 3 days I have found myself thing a few times, "I wish I could scream out that I am stressed and starting this new job stressed me even more!" I wish I could make an "announcement" to let people know if I may seem nutty or stressed or out of it, consider it normal. My mind is probably in a million other places other than my work. Of course I can't do this, cause you know what? They wouldn't understand. They would just wonder how I can be successful at my job with so much going through my mind while I am working. I guess I am a great multi-taker, in more ways than one. A few of my close friends at work, one of which came with me to the new office, knows my life and understand. Well, she understands as much as she is capable of I suppose. But yes, sometimes I just feel like yelling out to everyone, "I may look relaxed and well put together, but some days, it couldn't be farther from the truth. I put on a great show these days. Welcome to my world of having a diabetic husband. But yes, I am very happy and very much in love despite it all. The end :)"

Strength (Not thinking too clearly at the moment so it may not be written to well)

I have a very bad habit, if you want to call it that. I rely on Vince for my strength 24/7. My emotional strength that is. I need him to be strong and show me strength in order for me to get through situations. How horrible am I? I need HIM to be strong for ME? Doesn't he have enough to deal with in order to remain strong for himself? Why can't I let him break down sometimes? How unfair of me! Sad thing is, I don't always know how to keep it all together once he falls apart. We have so many things going on and going wrong in our lives lately, (some that I haven't talked or posted about, but maybe in the future when the time is right) that it's hard to keep it together all the time. Why is it that I can cry and be sad and he is there to pick me up 100% of the time. But then when he is down, I am not there 100% of the time to do the same for him. If he is just in pain and having a hard time, then I have no problem being there for him. It's when things that come up that are more emotionally draining on my heart in addition to his. A recent situation has made this happen again. I was dealing with the issue and as soon as I realized he was having trouble and was down too, it got me even more sad. I actually told him to please be happy. That we both have to be strong for each other so we don't lose it. Then shortly after, I started to lose it and I told him that I knew that was very unfair of me to ask of him. That I knew we would both get through this problem, and I told him I was sorry for telling him he HAD to be strong for me. Why do I think like this? Is it because he is the one person in my life that make me the happiest and whenever I need him, he is there to pick me back up? I know I need to learn to be strong for myself sometimes. I should not rely solely on him, since he has a hard enough time keeping himself together with all his issues. This is why when people say how strong I am, I don't believe it 100%. Sure, I am strong most of the time for him, but I think I need to do better.

My Frustrations

I thought this may be a good way for me to vent. Why do I have all these frustrations? It just isn't fair. Life's not fair, to say the least? Definitely not fair:

1. Not being able to cuddle, hug, or hold hands with my husband because of his nerve pain
2. Watching my husband in pain 24/7/365
3. People not understanding us and our difficult life
4. Not having enough energy to do the dishes in the sink, the laundry, or cleaning the house
5. Getting the same amount of sleep some nights as a new mom with an infant
6. The constant worry of my husbands numbers and general health
7. The financial strain of Diabetes and it's complications and coming up with any amount of money it takes to make Vince either healthier and/or more comfortable
8. Being mad at Diabetes and Neuropathy and taking it out on the hubby even though it's not him, it's the medical issues
9. The drowsiness Vince has from all of the pain controlling medications
10. Having to be smarter and more knowledgable than some doctors, grrrrr

There are many more, but luckily, I am in a good mood tonight, and when that happens, I can't think of them all, but who is complaining :) I will add more when I think of them.

A Quick Update

I wanted to write a quick update on the steroid sugar catastrophe from last weekend. Vince's sugars are back to normal and he is only using the Proventil (albuteral) for his occasional wheezing. Tonight we visited a different family doctor in the practice and explained what the idiot doctor did to him. He was obviously very careful how to respond since it is the same family practice but was very very nice and took his time with us. I have seen him a few times in the past and i really liked him so we are definitely sticking with him. He explained that going forward Vince should see a Pulmonologist. He said that he can use the one inhaler as needed but if the wheezing gets to bad and he needs a preventive, then the Pulmonologist is the one to see since he is diabetic and cannot take regular asthma medications (obviously) He said they may give him a different set of meds than the normal steroids to control the wheezing if need be and that they are more experienced in dealing with special cases. So all in all, it looks like he is fixed up for now.

Speechless and Furious

Warning: this could be a long one. I have posted a few times in the past couple of days about some issues Vince is having in keeping his blood sugar under control. This is the first time in 31 years that he has pumped himself full of insulin, on the hour, way more than ever "prescribed"' and the sugar remained high with no explanation. Well, it seems after a trip to the ER, and loads of tests all showing up negative, we figured out what was wrong. Thanks to a great ER doctor who took 10 mintues to look at my husband.

About two weeks ago Vince visited our family doctor for some wheezing problems. She went over all of his medical history, asked again how long he has been Type 1, and took down his medications. She proceeded to say, after examining him, that he must have developed asthma and prescribed two inhalers to him. One inhaler was a steroid, Flovent, to be taken two puffs, twice a day. The other was albuteral sulfate, Proventil, to be taken a few times a day at first, and then only as needed. So for the last two weeks, he followed the instructions he was given and the wheezing stopped and all seemed to be well. On Friday, about 72 hours ago, his sugar began to creep up to the 200-300's, and he couldn't get them lowered. This is very unlike him. He has always been able to control his highs when they happen, even when he is sick with a virus. So we did a site change about 3:30 Saturday morning. Saturday evening we decided to try another site change to a brand new location (his back) and got out a brand new vial of insulin. By Sunday morning, we knew something very bad was going on. He has never been this uncontrolled, ever. We called the Endocrinologist Sunday morning, and he said it sounds like an absorption issue. He said try a higher temp basal or try using the insulin pens for an injection in addition to the pump and see if that makes a difference. Throughout the day on Sunday, we continued to pump him full of insulin almost on the hour. He ate a sensible dinner. For this dinner, he would have normally taken 15 units of insulin. He instead took 35 units in hopes he could control the carbs he just ate. Two hours after dinner his sugar continued to rise, but at a faster rate. This is when we got out his insulin flex pen from the refrigerator and he gave himself a regular injection of another 10 units. We decided to wait one hour and if that injection did not work, then we would call the doctor again and ask if we should go to the ER. So at 8:30PM, we phoned the Endocrinologist and he agreed we had done everything possible and that there must be something seriously wrong like an infection of some sort. Keep in mind, aside from feeling crappy from the high sugars all weekend, Vince had no signs of any infections or other problems. So I gathered up a site and sensor change supply kit, (in case they made him remove his) and off we went to the hospital. We checked in just before 9:00PM. They got his vitals, checked his sugar and took down his list of medications. When Vince told him he was going to take some more insulin, they said okay and recorded it on his chart, but mumbled something to the affect of, "it's probably not doing anything but go ahead, since you probably know better than us" Keep in mind these were just the triage nurses. Vince and I both knew that even though the numbers weren't not going down, the insulin was stopping them from going to a severely high level. As we waited in the waiting room for the next 5 hours, they took all of the broken arms and flu patients and insisted we needed to just wait. We were getting livid at this. People would wait 1 hour and would get taken right back. We just sat there hour after hour thinking Vince must have an infection, kidney failure, or even worse: we both thought maybe it could be cancer! We didn't know each of us thought this same thing until later when we joked about how we were freaking out at the unknown of what was wrong. When you know all is well, you can only laugh right? A quick side story, while we were in the waiting room watching the people come and go, and walked in what appeared to be a Type 2 patient in a weak episode who lost her meter at home. She came in saying she was having stroke symptoms, and it turned out she was having a low episode and was being "silly" from it. Made us chuckle to see it and know she just had to get some OJ, which she did, and then walked out. Anyway, about 1:30 or 2:00 AM we were taken back and we explained what had been going on and said that the Endo told us to come in. They did blood work, urine check, chest x ray, EKG, and checked his entire body for any possible infections that we missed. They looked over his medication list and came across the Flovent inhaler. They asked when Vince had started using this, and we explained the wheezing from two weeks prior. They proceeded to tell us that people with Type 1 cannot be on steroids for an extended period of time, since, unlike Type 2's, they cannot fight against the raise in blood sugars. They explained that over the past two weeks, the steroids had built up in his system, and when that happens in a Type 1 Diabetic, it can cause the blood sugars to soar high with little chance of control, no matter how many units of insulin you pump into your body. We couldn't believe his family doctor would ever give this to him. I even asked her and the pharmacy about 3 times each, if this medication was okay to use with all of his other meds. This is something I always ask over and over because you never know...she assured us this was safe for him to take with the other medications and failed to mention he would end up in the hospital from it. So the ER doctor gave him a bunch of IV fluids and said that should help. We had no clue how but hey, if it helps, then go for it right? I asked if they were going to admit him, as they mentioned before they realized what was wrong, but they said no, since there is nothing they can do until the steroids are out of his system. They sent us home and said give it until Tuesday, tomorrow, and the steroids should be out of his system by then, and the sugars should go back to normal. Here it is Monday afternoon and they are already improving. 

I had asked the ER doctor what Vince should take since he is wheezing and needed the inhaler. He said the second inhaler that was given to him, Proventil, was much more safe for Type 1 Diabetics, and that he should only use that one. So...needless to say we will now be shopping for a new family doctor, and will not be seeing Mrs. Idiot who could have put Vince in kidney failure if it wasn't for us dosing him with insulin every hour for the last 72 hours. We were furious that she was so dumb to prescribe him this medication. Lesson learned, never completely trust what the doctor says.

What A Weekend

What a weekend. So stressful. Friday, Vince's sugar began to rise and it seemed no matter how much insulin we pumped, it wouldn't go down. As I posted, at 3:30AM that morning it dawned on me that there could be a problem with his site, so I changed it out. We thought his sugar began to come down, but it didn't last too long. It began to soar upward again. He started to feel sick from the sugar being so high. When we were able to get it down, it dropped fast and the raised back up just as fast. Throughout the day on Saturday, he bolused about every two hours in hopes it would come down. By evening, I asked him if we should try changing the site one more time. He agreed, so I got a brand new vial of Novolog from the refrigerator, and put his site towards his back this time, away from any possible scar tissue from all of the needles in his belly. Once we did this, his sugar remained high but not nearly as elevated as before. We decided to give it the night to see what happened before calling the doctor for help. Again I woke up at 3:30AM, not sure what is with that hour, and Vince was up with me. I was checking his sensor about every 3-5 minutes to see if his sugar was raising fast or just staying steady at a high level. We could see slight improvement, so we just kept an eye on it until morning. I called his doctor this morning and explained what had been going on, and the site changes we had done. He agreed we had done everything possible and that it must be an absorption issue. He recommended trying the lower back again or even the thigh or upper rear. Another option he gave us was using a temp basal rate of 125% for about 8 hours to see if we can control it. He asked if we have any flex pens and needles and i said yes. He said if all else fails, we can try that. As the day is going on, his sugar is running in the upper 100's now, which is still high but I think we are starting to get it under control. How stressful. The more hours that passed with his sugar running 200-300's, both of us kept thinking about his eyes. We both know, if his sugars are uncontrolled for any period of time, the blood vessels could start to leak again, and that would mean trouble. Luckily, I think we have it under control with the new site area. He has always used his belly, but he said next time we change the site, he agreed to try the upper thigh and see how that works. We have to be careful since that could hurt his leg and set off his neuropathy pain. It's worth a try though. I think I need a weekend to recoup from my long weekend of stress and interrupted sleep. I am just glad that we did everything we could and that it is starting to come down again.

The Light Bulb Finally Went On

So here it is again, this time 3:30AM and I am awake. Vince's sugar has been running consistently high recently with no explanation. No matter how much insulin we give him it just won't go down. So this morning, I am awaken by Mr. Beeps and he is asking for a calibration, meter BG. So I get up, turn on the light (no more being lazy, it's just easier to turn on the darn light! LOL) and I get Vince's meter. I prick his finger and he is once again, still high. So I dose him with about 6.5 units of insulin (per the good ole' Revel, gotta love not doing the math) and I am about to close my eyes and go back to sleep when it dawns on me: he must have a bad site. Or maybe his site is in a bad spot. Regardless, now I am left with the decision of either waking him to change his site, which as I have explained before is not an easy task due to his lovely medication, or I can just change it myself. So why am I still contemplating this? Well because it is also the day to change his sensor site and flip to the other side of his belly. (all of which is done in one "transaction") So do I wait until later this morning (when the darn sun is up LOL) or do I change everything now? I hate changing the sensor, because sometimes it doesn't play nice. Do I really want to deal with that at now 4:00AM? Well, I think I will. He needs to get his sugar down and I think changing the site is the only thing we haven't tried. So off I go with a bunch of needles back to bed. I or we will be up in another two hours to calibrate the sensor and then hopefully back to sleep after that.

A Little More of the Story

Vince and I have been thinking a lot about his diagnosis lately. Mostly due to a reader of my blog that brought Neonatal Diabetes to our attention. Apparently Neonatal Diabetes is a rare form of the disease that affects small infants and is a gene mutation instead of an autoimmune disorder. So Vince starting asking his family what exactly happened back in 1980, the year he was born. Apparently when he was 6 months old, he got strep throat. He was sick for weeks and just couldn’t seem to get better, even with antibiotics. Then one day he started peeing, A LOT. That is when his mom knew exactly what was wrong. Unfortunately, by the time she realized he was this sick, he had passed out. They rushed him to the Children’s Hospital and he was in a coma. That was the day they knew he had developed Type 1 Diabetes like his older half brother. The only difference was their ages. His brother developed it about 15 years earlier at the age of 6. Vince was only 6 months old. Just an innocent little baby whose pancreas decided to abandon him. Luckily, they got him medical help in time and were able to stabilize him. That was the start of his life of 31 years with this horrible disease. Because we are talking about 1980, there was not the testing that there is today, let alone the knowledge of something like Neonatal Diabetes. I do not however think that Vince has this rare form of the disease since he was sick beforehand. That is more characteristic of a “regular” Type 1 from what I have read. Regardless, it leaves us to handle the sugars, pumping, nerve pain, and loss of vision today.

What Is The Right Response?

I heard the words today that I didn’t think I would ever have to hear or respond to. Words that many of my DOC friends kid’s say. I always say since Vince was diagnosed as a baby, he says he knows no other life, so being Diabetic doesn’t stress him like it may others. Well today is different. Today, he finally told me what he has been holding in. He is a very quiet and private person with his feelings. When something huge is bothering him, he holds it in until I drag it out of him. If it concerns me, he is usually more verbal about it, but if it is personal, he doesn’t always tell me right away. Today he actually told me he is tired of being Diabetic. I didn’t know what to say. It was on the phone. I just sat there as the tears welled up in my eyes. What do you say to that? How do you respond and make it all better? I was running through my brain for the right response and all I could come up with was, “I know”. I think all of his complications are finally getting the best of him. Between his poor eye sight and the neuropathy pain with numbness and muscle weakness, let alone the day to day care of the Diabetes, I think he is just overwhelmed. Although he has been Diabetic, practically since birth (we are actually trying to find out EXACTLY how old he was, as he has always been told about 6 months and I will share when we know) he has never had to deal with the complications on top of the daily care until recent years. I wish I could just take it all away or say it will only last another week and then it will be over. Like the flu. But no. This will last a lifetime. The good thing is some days are better than others. It may not and probably will not be this bad forever. I am sure, as with all things, his body will change, and the neuropathy will change and hopefully it will be for the better. That is what I try to remind him of. He is so strong but when everything piles up on him, or certain things happen in his life, he is reminded of his struggles and it all comes crashing down. I guess he can’t be strong 100% of the time. I wish he could, but he isn’t Superman, is he? He is my Superman. He is always strong for me, but it shouldn’t be like that. He needs to be strong for himself.

An Early Start to the Day

So I am awaken at 4:30AM by Mr. Beeps. I try desperately to turn on the back light of the pump but failed. I got out of bed, and flicked on the light. Low Battery and low sugar. Great...okay so I go to the kitchen, grab a butter knife and a battery and head back to the bedroom. Sounds like a horror story! I change the battery out and look at the sensor numbers. Yup, dropping low. The sensor read 88 and falling with active insulin, so I got up and tried to wake Vince. He opened his eyes and I told him he was going low and I shoved a glucose tablet in his mouth and proceeded to yell "eat it, chew it, don't choke!" over and over until he caught until he on and chewed. I asked him over and over, (or more like demanded) and kept shaking up until he came too, why he had active insulin at this hour of the morning and he wouldn't answer me. I got out his tester, and pricked his finger: 73. I yelled, "your not that weak! Answer me!!!!" I went to the kitchen again and this time got a cup of ice tea for him to gulp down. I brought it to him and told him to drink fast. He gulped down the entire cup in a few minutes and I started again. "why do you have active insulin?!" he finally said it was because he was high when he went to bed and that he must have overcorrected. This is a big thing with Vince. Overcorrecting. With all of his complications, he overcorrects because he is afraid of being to high, and then we have lows to deal with. Anyway, I asked him why he wasn't answering me even though he wasn't that weak. He then explained that since he hasn't been weak in a little while, the 73 hit him harder than usual. Then the tears started. His first, then mine. I asked him what in the world was wrong. He said he knows taking care of him is a full time job of mine and he doesn't like being sick. He doesn't like that I have to take care of him and wonders why I married him. This is when my tears started. I am thinking in my head, "what can I say to that, to make it all better" I just told him that I love him and that is why I do it and that is why I married him. I asked him how HE puts up with ME while I am yelling at him. Although I am not yelling at him. I am yelling at the stupid situation that is no ones fault really, except D. All I could do was hug him and tell him it is what it is and we will get through it. What else can I say? so I finally calm him enough and he falls back to sleep. The light got turned off somewhere in the crying and I lay back down but of course my mind gets the best of me when I am trying to go to sleep so I just think and think. How none of this is fair. I figure if I get out of bed and write it down, then maybe I can clear my mind and get a little more sleep before going to work. Well it is now 5:30AM so I am going to go to bed and try to rest.

All Registered!

The Sugar Free Floyd's have registered for this fall's JDRF walk! Exciting!

The fine line between low and too low

This evening Vince and I visited his Neurologist. It was a pretty quick appointment, with little change recommended from the doctor. He could see that Vince was looking good and had lost some weight. He said he doesn't want to change anymore medicine for the time being. I think I like that idea. I think it will help him to take time and let his body adjust without increasing his topamax, as the doc has been doing for the last few months. Since Vince's good days are getting better, he wants to give him a few months to see what happens. Although the bad pain days are still frequent, when he has a good day, the good day is really good, so we will see. He also explained that even though his sugars are controlled at an A1C of 6.7, he thinks that if we can mange to get it even lower, that eventually the pain will give a little and the nerves may start to calm down. It is a tricky game though. He has had plenty of times in the past that his A1C was around 6.3 but there were lots of hypo low reactions. That is the hard part of this game. To try to keep him as low as possible without to many low episodes. So we agreed to try to correct him more often and be as strict as we can to see if we can get it lower, but try to avoid the hypoglycemia episodes as best as we can. I think with the two of us watching it around the clock, then we should be able to do it. It will just take more monitoring day and night. A lot of times, I will check his sensor before I leave for work and if it shows 160, I won't correct him since I will be calling him to wake him to take his medicine later in the morning. I think from now one we need to carefully and cautiously correct him and just really keep an eye out for the lows. We will see if we can do this and see how it works. He also said that if he can get his A1C even lower, he may have MORE pain at first before it gets better since the nerves will try to calm, a process that also causes pain. So pain all around but hopefully with this approach, we can continue to try to get hubby feeling better as the days go on. We will see the doctor in a few months for another check up, after he has had 2 more A1C checks. The doctor made a big point to say we are both doing a great job in doing everything we can to help Vince feel better. It is nice to hear these encouraging words from the doctor!

D has to make it's appearance all the time...

I thought I would share something with the rest of my DOC buddies. Vince and I proved something this weekend. Not that we didn't know this, it just kinda refreshed us on how much affects D. Vince had a stomach bug Saturday afternoon and is still trying to get over it today. I think it's on it's way out. Anyway, no matter how much we bolused throughout the day on Sunday we couldn't get him under 200. He didn't even eat anything until the evening and he was still high. I actually wasn't quite sure if somehow his neuropathy was causing the stomach ache (not that it has in the past, but I try to think of all the possibilities) or if it was actually a virus. Once I realized his sugar wasn't coming down, I was convinced it was a virus. It's bad enough to feel under the weather. Why does D make everything so much more difficult! Stupid D!!

He is starting to get over it tonight, let's hope it doesn't return by morning. Time to get these numbers back to normal :)