Trust Issues

Trust is a strange thing. They say you are one of two kinds of people: 1. You trust everyone immediately, but if someone breaks that trust, it is hard for that person to earn your trust back. 2. People have to work really hard to get your trust, but once they have it, it's hard to lose.

I fall into the first category, without a doubt. I trust you, until you mess it up.

That being said, this trust that I "give" freely is not so simple. It takes a long time before I really let anyone into my inner world. So if you have access to that world, you have my trust, too. Anyone else on the outside has some trust, but they don't have it all. It wasn't always this way, but the events of my life have made this system of holding people away from me has evolved as a means of self-preservation.

I have been broken too many times to freely trust anymore.

Every member of my family, including my in-laws, has broken my heart (and more than once). All of my "best" friends have broken my heart (repeatedly). The vast majority of my close friends have broken my heart. Even my church family (who really are like family) has broken my heart, and in ways I never thought they could. Over and over and over again. This isn't just "hurt feelings" or a broken heart like "the boy I like doesn't like me back" kind of hurt. This is a soul-crushing, completely shattered, torn up, scarred, salt-in-the-wounds kind of broken.

Our language just doesn't have the vocabulary to fully describe what that feels like.

Maybe this is normal, but upon reflection, it feels crazy that no one in my life has been fully trustworthy. I mean, really, not even Mom??!?! It's rather depressing. Even more than that, it's like a game changer for my personality.

I like to think I am still trusting, but I know how few people I actually let it (and its fewer than would even realize). Some days I feel like I haven't allowed anyone in, and that's scary. But I just can't bear the thought of being hurt like that again.

This is even more complicated by the fact living with two T1Ds is like having your heart repeatedly ripped apart and then stapled back together, just to be torn up again. I can't remember the last time I didn't feel heartbroken. Every abnormal lab or abnormal BG, every complication and mood swing does it. Every time one of them is high and cranky, overreacts and yells at me or is short and defensive, I get hurt. Because they act this way regardless of how patient I am, and because they don't mean to (and honestly cannot control it). Then I watch them feel guilty and horrible and beat themselves up for treating me that way, and I honestly feel worse because I do get it. No amount of understanding stops the heartbreak, though.

Knowing what the future will hold for my guys if a cure isn't found is a whole other level of heartbreak.

Needless to say, while I'm always feeling hurt and broken, I really struggle to trust people, especially new people. I see how this affects my ability to make new friends and be social. I see how it also affects my ability to continue trusting friends that have hurt me. I just can't handle more pain.

School already?! Where did the time go??

Well, I had intended to start writing more regularly, and then I don't know where the days went. August is our month of birthdays--my son's, my daughter's, and mine, along with several other relatives! September is full of more birthdays. Planning for kids' parties and getting everything ready for them really makes the days fly by.

Today was the first day of school. I homeschool W, and he is in 6th grade this year. It can be a lot of work and stress for me, but it is also very rewarding. This is our 3rd year with Oregon Connections Academy (ORCA--a free online public school!), and I definitely learn more as the years go by. Even though today was technically the first day, we didn't have any actual course work to complete, so we spent the day organizing and getting ready. We already had his books and supplies organized, so it was more his daily schedule that we had to get in order. ORCA has orientations for both the "learning coach" (my title) and the student, so we went through those. Now that W is in 6th grade, he also had to sign an honor code, saying that he would behave with academic integrity. I keep trying to impress upon him the fact that he is expected to be more and more responsible for himself and his actions as the years go by. Growing up is hard! :P

Peanut will be starting preschool next week. She's pretty excited about it. The classes are only 2hrs long, 2 days a week. I am sure she will do great, but earlier she asked me to stay with her at school and I had to explain that I can't do that. :( I am just praying that she is so excited to play with the other kids that she won't miss me at all!

School always brings on interesting issues for W's blood sugar. Today he had to also work on LEAP pretests, which kind of show a baseline of what he already knows and then he will take postests at the end of the year to show what he has learned/improved on. I kept trying to reassure him that these tests were not a big deal--there's no grade to them even!--but he was just flustered and emotional by them. He's also feeling left out by his neighborhood playmate, and that was adding to his emotional issues. :( He managed to finish one of the 2 tests depsite his drama, though.

Now, at bedtime, his BG was all the way up at 520mg/dL!!!! That is outrageously high for him! :( We had waffles for dinner, and I let him take his insulin after eating so we could count more accurately (the normal protocol is to dose before eating, and we are very strict on that, so this was a rarity). It's hard to know how many waffles you can eat! ;) So, he had just gotten his dinner shot about an hour before that high BG, which means his insulin was just starting to kick in. All we can do is wait. An hour later, he is at 459mg/dL. I'm glad he's coming down, but it would be nice for him if it was going down a little faster.

When you have 2 BGs over 300, you have to start checking for ketones when you go pee (you have to pee on a stick). Ketones occur when your body starts breaking down your fat for energy, and they are a sign of a very serious, life-threatening complication of high BG called Diabetic Ketoacidosis (DKA). Ketones range from negative, to trace all the way up to large. If you are in DKA, you probably have large ketones. If you can catch the ketones while they are trace, you can prevent DKA from happening. So we are religious about checking for them whenever we have 2 tests over 300. I had W check, and he currently has trace ketones also. I'm not surprised, but that means it will be a long night for me. :S

Ketones go away with insulin and drinking lots of water. He only had moderate ketones when he was diagnosed with T1. Most children are in DKA when they are first diagnosed, so we are lucky he was not as severe as he could have been. Since then, he has only had trace ketones one other time in the last 20 months since his diagnosis. I think we're doing pretty good.

Now I need to wait another hour to test his BG again (hopefully he'll need to pee again so we can check ketones too) before I go to bed, so I'm going to go cuddle with Peanut and watch some Higglytown Heroes with her. :)

Lacking...?

I haven't taken the time to post anything in a long time. The longer I waited to post something, the easier it was to just not do it. I think I was content to allow life to get in the way, but my whole purpose of starting this blog was to give me a place to work through all the inner turmoil I feel from the difficulties in my life. So, I am here to try to get back into letting things out. We went to church yesterday after missing many weeks of going. Somehow, when we are there, I swear the sermon and bible readings are meant just for me. Yesterday was definitely no exception. The message was over 2 Corinthians 12:1-10. In this passage, the part that spoke to me was about Paul embracing his weaknesses. "Three times I prayed to the Lord about this and asked him to take it away. But his answer was 'My grace is all you need, for my power is greatest when you are weak.' I am most happy, then, to be proud of my weaknesses, in order to feel the protection of Christ's power over me. I am content with weaknesses, insults, hardships, persecutions, and difficulties for Christ's sake. For when I am weak, then I am strong." These are very powerful words! How often do I wish and pray that I didn't have to worry about the difficulties our family faces with type 1 diabetes, and other hardships we face each day! I need to find a way to embrace and be thankful for these hardships instead--maybe there is good God plans to work through my family. This is something I need to think and pray over some more, and I know it will be an ongoing struggle to be thankful for such an awful disease, but I feel this sermon was telling me I need to try something different. :)

My Princess, Peanut!

I just read a very silly post on my sister's blog, and it has left me feeling too giggly to do a serious diabetes-related post tonight. So, I will post about my other obsession--my daughter, Peanut! :) Peanut is 2 1/2 and she is such a delight to my day. Except when she's having a "terrible twos" moment. ;) Right now, we are watching "The Princess and The Frog" (one of her favs) and I had to rewind one of the song chapters three times just so she could dance and twirl around the living room to the music! :) Nothing brightens my mood better than her twirling and giggling. It's adorable! :) Peanut provides us with continual reminders of how precious life is, and how important family and the simple things of life really are. Once your kids hit the school years, it's easy to lose that perspective because your life is focused on homework, friends, games and practice... You just get busy. I know that the future of my little family includes a lot of sadness and hardship. It's easy to get lost in the grief of that reality. I know that in order to survive what is to come that I need support around me, and people to remind me that there is goodness and happiness to focus on too. :) I truly believe God gave me Peanut to help with that future need. There is a bond between daughters and mothers that is so special and unique from the relationship between mothers and sons. I am going to need someone to look after me while I am looking out for my guys, and I know that will be Peanut. She will be the one to notice my subtle mood changes and see things that are wrong with me that no one else could. She will share my fears and grief because she loves Chris and W just as much as I do. Peanut and I are also very luck to have the support of my big sister and my mom, along with some dear friends that I consider my extended family. I am striving to continue to open up to people, which does not come easily to me, and build a group of people to lift me up through all the bad, and love me through my grief. :) Until the future arrives, I will just enjoy each day as best as possible. I know it's normal and ok to have the bad days and that they make the good days that much sweeter. I also know that the future is not guaranteed--we only have the present. So as much as I fear the future, I continually remind myself to focus on one day at a time. And now, Peanut is playing "this little piggy" with my toes, so that's my cue to be done! :D

The Opposite Extrerme

Now that I have discussed low blood sugar (hypoglycemia), I felt it would be good to focus on the opposite side: high blood sugar (HBS). Hyperglycemia is the medical term for HBS. Since our normal range for blood sugar is 80-120 mg/dL, anything over 120 is technically high. HBS is impossible to avoid for diabetics, no matter how carefully you manage your disease. It's easy to assume that diabetics can easily control their blood sugar by watching their diet and taking their insulin. However, blood sugar is affected by more than just what you eat!!! Things that affect blood sugar include: -exercise -mood/emotions -stress -illness -amount of sleep you get -other health conditions -medications you take -diet -traveling All these things have the potential to raise or lower blod sugar, and the effects are different for everyone, and may not be the same every time. Of special note are: Exercise typically will lower blood sugar if you are within your normal range at the time, but that effect may not kick in for several hours. If you exercise while you are already high, the exercise can make you go higher instead! Moods and strong emotions, like anger or excitement can make you go high. Stress, whether emotional or physical, can make you go high. Illness causes all kinds of haywire for diabetics, making you go high and low regardless of treatment. I'm sure I will post specifically about illness in the future because it is s big topic on its own. Some medications are known to affect blood sugar, so it is important to be aware of the potential effects any meds may have on blood sugar, insulin absorption, or efficacy of type 2 oral meds. So, can anyone control their feelings? Can anyone have full control of their stress level? Can anyone completely prevent getting a cold or any other illness? ABSOLUTELY NOT!!! This is impossible for anyone to do, so it is equally impossible for any diabetic. That is why controlling blood sugar is so difficult! :( HBS has its own list of symptoms. Some of them are similar to the symptoms of low blood sugar (convenient, I know...) . Again, these symptoms vary from person to person and day to day, and also vary depending on how high you are. Some do the symptoms I know or have seen include: -frequent urination -extreme, insatiable thirst -confusion -anger, frustration, irritation, crankiness -unable to think clearly -poor memory and retention -unable to sit still (may look like hyper activity in kids) -giddy, excited, hyper -fast speech -incoherent speech, incomplete sentences/thoughts -headache -blurry or fuzzy vision -coma -death Just like with low blood sugar, you may not feel any symptoms when you are high, so it is important to check your blood sugar instead of going by how you feel. High blood sugar is scary for 2 major reasons. The most important is that long-term HBS is what actually causes irreversible damage to the disbetic's body, leading to scary complications and possibly death. I will deal with thee complications in another post because this is a big subject by itself. The second reason HBS is scary are the last two items on the symptoms list--coma and death. Prolonged HBS leads to a condition called diabetic ketoacidosis (DKA). This is just as scary for a diabetic parent or spouse as any low is. Again, this is a big topic, so I will fully address it in another post, but I will say that DKA is the main reason for hospitalization for diabetics, and it is guaranteed to happen regardless of how carefully you try to prevent it. The goal in managing diabetes is to achieve normal glycemia, or blood sugars as close to that normal range as possible. The less variation from that normal range, the less at risk you are to developing complications early. With the basic info I have provided, it should be obvious that this is as very difficult goal. No one can be perfect all the time. So we just strive to do the best we can, one day at a time. :)

An Ordinary Evening??

W just woke up to use the bathroom. That isn't a strange event, especially for a diabetic. However, instead of heading back to bed, W came over and stood by the front door. I asked him what he was doing, and he kept telling me he needed t use the bathroom. He was fairly irate that I was questioning him, and was clearly confused. Then, he tried to open the door, which just happened to be locked for the night. I have never been more thankful for a locked door! The fact that the door wouldn't open seemed to frustrate and confuse W more, as did my asking where he was trying to go. He tried to tell me he needed to get something, but wasn't able to form a coherent sentence. Events like this are unfortunately not an abnormal occurrence in my house. The strange behavior W was exhibiting could be chalked up to being half asleep, or it could be due to hypoglycemia. Hypoglycemia is the medical term for low blood glucose, or low blood sugar (LBS). Sugar is what gives your body energy to function, so there is always a certain amount of sugar in your blood. This level will fluctuate during the day, but the normal range is between 80-120 mg/dL. Because they cannot regulate their blood sugar themselves, diabetics must regularly test their blood sugar. The frequency of testing depends on the type of diabetes. Most people have seen the "check your blood sugar and check it often" commercials, but we will discuss blood tests in a later post because they really deserve a rant of their own. Needless to say, for T1Ds, lots of testing is required--before every meal and before bedtime are an absolute minimum. LBS occurs anytime blood sugar falls below 80 mg/dL. Symptoms vary from person to person, and may vary depending on how low the low is. The most common symptoms I have seen or heard are: -confusion -extreme, ravenous, insatiable hunger -pale skin -sweaty (like shirt-drenching) -shaking, dizziness, fainting -loss of coordination -incoherent speech, mumbling -walking around but unaware of surroundings -anger, irritation, frustration -seizures -loss of consciousness -death This is a pretty frightening list, and every low is a scary experience, for both the diabetic and the parent or spouse watching. Fear of hypoglycemia is a major reason why people don't change their diabetes as well as they should, particularly if you are a parrent managing things for your child. There aren't a lot of numbers between ok (80) and death (probably 20 and under--I'm afraid to know the exact number). I will talk more about this fear and ways to overcome it in future posts--this is a HUGE part of my daily life. :( As the "health partner" for two T1Ds, I spend a lot of time watching behavior. Specifically, I look at the subtle differences that only I would notice by knowing my guys so well, all in the hope of knowing what "normal" is for them so I will notice when they are not normal. I also watch and try to learn what symptoms each one tends to exhibit whe they are low, and of course they don't have the same symptoms. But I am terrified of hypoglycemia, so I can't help but obsessively watch them. Again, because this fear is such a huge part of my life, we will come back to this topic and the events that solidified my fear forever. :( So, back to W's strange behavrior. I'm sitting here watching him and absorbing the strangeness, and I immediately think that he may be low. So I ask him to go test. This suggestion is met with further combativeness and frustration, it he heads to the kitchen and washes his hands. Then I hear him complaining and slamming things around--apparently he can't find his meter. I know that it is in his room, so I go and grab it for him and he does his test. The meter reads 102. Technically, that's not low. However, it's not that simple. I know that he has been running high lately (we will discuss high blood sugar in another post). When you are high for a few days, your body adjusts to that and it starts to feel normal. The when you drop back into a normal range, your body reacts like it's having a low. This is likely what has happened to W. Either way, 102 is too low for the middle of the night for him, so I decide to give him a snack a before sending Hhig to bed--4oz of apple juice and a big spoonful of peanut butter. As he sits next to me on the couch eating, I can tell he is feeling better, and he asks me about what was going on. We both end up giggling about his fight with the locked front door. :) All in all, that's a good night. But sitting here writing about it, my heart hurts because I hate that this was a normal night in our world.

What is Diabetes?

Anyone that reads this blog will need a working knowledge of diabetes to be abl to relate to my stress and heartache with this disease. I would also love to help spread awareness about diabetes, specifically type 1 diabetes, and also help to eliminate some of the misconceptions about the disease. The information I am sharing is what I have gathered through my own reading and research, and through on-going education as part of managing my son's disease. Type 1 Diabetes used to be called juvenile diabetes because it usually affects children. However, we now know that teens and adults can be diagnosed with this type so th term "juvenile" is not appropriate. T1D is an autoimmune disease, which means the immune system attacks the body's insulin producing cells, called beta cells, which are i the pancreas. Once the beta cells aree damaged, they cannot produce insulin, so T1 diabetics must take daily insulin shots. Insulin is a hormone that, among other things, allows your body's cells access to energy from the food you eat. There is no cure. There is no way to contract or prevent this disease. It is not caused by eating sugar or by being overweight. Type 2 Diabetes used to be called adult onset diabetes, but as I mentioed above, that label is not appropriate when adults can have type 1 diabetes as well. In this type of diabetes, the body is becomes resistant to insulin. As the insulin becomes less effective, the pancreas produces more and more insulin, causing further resistance and a vicious cycle of more insulin ands more resistance. Another function of insulin is to store extra energy as fat. This means that as the type 2 person's body keeps pumping out insulin that cannot be used, more of the food they consume is being stored as fat. That is why type 2 diabetics are usually overweight. Losing weight can often reduce or eliminate the disease, but most people need to use an oral medication along with following a special diet to control their symptoms. These are obviously two very different diseases, so why do they share a name??! They both affect the pancreas and involve insulin. They both have the same warning signs, including: -Excessive thirst -Frequent urination -Excessive hunger They both have the same frightening list of complications if the disease is not managed properly, including: -blindness -loss of limbs/amputations -kidney damage/failure -heart disease -nerve damage -coma -death Type 2 Disbetes often goes undiagnosed for years, so the risk of complication is higher and faster than it is for type 1. I would also like to think that this is also because of the tireless care provided by the parents of diabetic kids. But these risks are very real, and those of us who love a diabetic work very hard to delay them as much as possible. That's enough info for one day. Thanks for reading! More on this subject to come. :)