Wednesday, March 27, 2013

Not The Begining Yet The Begining

Beautiful, ugly mystery. That is the best way I can describe life as a T1D (type 1 diabetic), and that is why I have titled my new blog this way. It's ugly numbers, ugly emotions, ugly physical feelings, ugly thoughts, ugly fears and ugly worries which all add up to a mystery of things. It's a mystery some days when I seem to have done everything right. I added those carbs and that insulin so why am I spiraling down and can't seem to go back up no matter what I eat? I didn't have that chunk of French bread or that brownie and I stuck to what I should have and I took the right amount of insulin so why am I going high as a kite?! It's inevitable that some days no matter what I do, it's a mystery as to why my body is doing what it's doing and the numbers are ugly and the way they are making me feel is ugly.  I've been inspired to start this blog because if there is anything I have begun to realize lately it's that there is always someone out there who knows how you are feeling, what you are thinking and what you are going through. Only recently have I begun to finally realize this as I have discovered other women like me who are blogging. Sometimes the only way to realize how much you are not alone is through this great wide modern world of the Internet. T1D is common enough that most people may know someone that has it or has known someone in passing, but not necessarily common enough that if you get a group of people of 10, 20 or maybe even 30 that there would be more than one person that is a T1D. That makes it kinda really hard to find anyone that understands what I'm really going through. I was diagnosed 4 1/2 years ago and yet within the past two months I feel as though I was diagnosed all over again. After lots of research, me dragging my feet and lots of prayer by me and my husband we decided to get an insulin pump for me instead of me doing 5 shots a day. This turned into discovering my endocrinologist was awful and I found a new doc. This new doc is great, his diabetes educator is phenomenal, and next I will be seeing a nutritionist next week that specializes with type 1 diabetics. All of this has been great moves in the right direction, but somehow, even though I've had this for almost 5 years it's just started to hit me in a new way. This is something that I have to live with for the rest of my life, this isn't just going to go away. It's not a really long drawn out flu or cold. Most people don't know what all the life of a diabetic entails on a daily basis, most people think it's just not eating sugar and that's not the case at all. It's numbers, lots of numbers and adding and guestimating, and finger pricks. A person without diabetes will have their blood sugar levels stay between 80-100. Mostly is the 90's I believe. Someone like me, that's a dream!!!! Lately the 200's are way too common and that's scary. Highs like this make a person more susceptible to infections, sicknesses and in the long run things like vision loss and damage to the internal organs, loss of circulation which leads to amputation of limbs. I'm not trying to be a Debbie Downer here. I'm just getting it all out, again this is my outlet. Not that anyone is actually reading this, but if you are, maybe this will educate you and you will realize why I have to take my health and diet so seriously and why I freak over some of the things that I do. I want to grow old and healthy with my husband, be able to have healthy pregnancies and see our kids grow up and see their kids be born. So now that I've gotten all that out of the way, here is an account of just another day in my life, this was kinda scary one and I guess the downfall of learning to wear a pump.
So Saturday before going out to dinner I changed out the site of my infusion set on my pump. I just switched to the Quicksets cuz that's what Debbie, my diabetes educator said I should be using instead of the Silhouettes. I used these once before no problem. It didn't feel right this time, but I just left it. We went to dinner, I changed the set at about 5:00. At dinner I started to freak thinking I gave myself too much insulin. I wanted to get to the car for a juice box but at the same time didn't want to rush Brad on his beer. Then the waitress was taking forever to bring back Brad's credit card and I'm envisioning myself passing out from a low and Brad having to use my glucagon shot on me in the restaurant. We finally get to the car, no juice box. We were going for drinks next door anyway so I had Brad order me a regular soda. As I suck down a few long sips I check my blood sugar expecting an incredibly stupid low. It was the exact opposite! Crap! Light bulb! That's the wine from dinner I'm feeling and not a low. (Side note, I can drink alcohol, bad thing is that a sugar low can feel like being tipsy.) This is bad. I remember that it didn't feel right when I changed my site. Suck! So, because I wasn't totally convinced that there was a problem with the infusion set and it wasn't my bad (I mean fantastic!) carb counting skills, I programmed the pump for the amount of insulin it said I needed and waited. I waited a half hour checked again. Still climbing. Brad started to bug me, what was wrong, what do I need to do? I don't know! I'm still trying to figure this gadget out. At this point it's been over three hours with no insulin getting to me. I take an injection. Another half hour, check again and it's going down. Thank God. I wait an hour and it's not going down fast enough. We get home, I check again and it's back to climbing. This time, I'm at 325!!!! That's it, I change my site and sure enough somehow the dang thing is bent, not even punctured my skin. 5 hours with no insulin. Well that's dandy. I give myself another injection then fall asleep on the couch. High blood sugars have me feeling pretty poopy. Wake up to go to bed, check and high as a stinking kite! Brad tells me to change my site and go back to the old ones, the Silhouettes. I take the one out and sure enough it's bent again! What the? I'm still trying to figure out if I'm going to try the Quicksets again or not. I'm just thankful this didn't happen while I was sleeping. Don't want to think about the outcome of 8 hours, (yes I said 8 hours, it was a weekend with no plans and we have no kids so I still have the luxury of sleeping in really late if I want) or more without insulin. Bad news bears there!!! So what can I possibly think is beautiful in all of this, well, there are days like that one that it’s really hard to find. In that one the beauty and thing I was thankful for that I hadn’t made the dumb move and gone to bed without checking my BG (blood glucose –sugar levels) and ended up without insulin all night. I really don’t know what would have happened nor do I ever want to find out. I know that this has been pretty long, but as my first blog I think I can get away with it. Besides, by now no one would probably keeping reading all of this and I really don’t care one way or the other. But if you are, I promise to get to the beauty in blogs to follow, because it’s not just all ugly even though a lot of times it seems to be buried I know deep down it’s there.

This is a picture of the bent canula that should have been in me. It was bent like this both times that I changed it that night.


  1. Thank you! Thank you for sharing this because you are helping me to get an education with this disease. This blog will be a blessing to many and won't be surprised if you make some amazing connections with others who are walking this similar path.

    May God pour out His grace, wisdom and peace on you during this journey. I love you my precious Jessi!

  2. I went looking for your first post. What a horrible intro to the pump. Have you looked at a CGM yet? I know it's another thing you have to wear, but I couldn't live without one now. I've worn all the Dexcom models, up the current G4 and love it. It may seem like a lot to take on when you've only just started on the pump, but it's worth thinking about.

    You might also want to check out Gary Scheiner's excellent book Think Like a Pancreas. It's an easy and informative read, make sure you get/borrow the 2nd edition.

    God bless

    1. Before I even ordered my pump I talked to Medtronic and my insurance co to make sure we knew what all of our costs would be including the cgm. Then when I ordered it all I went over it again. My doc at the time made me wait a month after I got my pump before going back to him for the cgm and training on that. Thank God he did because I had to call Medtronic regarding a Billing question on everything and that's when I was told that the sensors for the cgm would be $600. for a 90 day supply! No thank you! Needles to say, I don't have a cgm at this time.