Round And Round We Go

At one point early in the weekend I was thinking about it and had thought I was just going to stop blogging. What is the point. But the weekend and yesterday were really rough mornings and, well, I did start this because it’s really my only outlet. Since my CDE (certified diabetes educator) Deb made adjustments to my pump last week I have been in the 200 -300 after breakfast all morning and cannot get even close to my target range of 90-100 until maybe lunch time. I just wanted to cry when it happened again for the 4th day in a row yesterday morning. This sucks, really sucks! I could have really used a “D” friend right now for some back up and to give me a pep talk. I wasn’t going to wait until Wednesday to send in my numbers to Deb, so I emailed her right off the bat yesterday morning and in a few hours she called me back, asked some questions and then had me email over my log since Thursday. She called back in another few hours and made a couple more adjustments. She is a bit confused…Way to go my body for throwing curveballs at yet another medical professional! Yet, she again encouraged me it’s not my fault, she knows I’m trying really hard to get in range and I’m not eating or doing things that I shouldn’t. Sigh, why would trying to figure anything out with my body be easy? It’s weird, not so easy to ever diagnose anything. Yet again not a standard text book case on anything. I’ve said before that if it was possible to do a live autopsy on me to see all the weird happenings inside of me I’d be all for it. I’m praying that we are going in the right direction and that we now know what we need to do to get things closer on target. Yesterday there were points I just want to break down and cry. It’s been a lot of wanting to give up lately and not care anymore. I had some thoughts that I haven’t allowed myself to have in a long time. Why? Why does God allow this, why me? Why anyone? I wouldn’t wish this ugly disease on my worst enemy. All day I was trying to give myself pep talks, that I’m not just trying to take care of myself for me but because of my husband and because we want kids someday. One step at a time, one finger prick at a time, one calculation at a time, one must have a snack when I don’t feel like it at a time, one passing up a snack I really want at a time, one bolus at a time, one pump adjustment at a time, one high or low at a time, on site change at a time, one changing out the reservoir on my pump at a time, one good cry at a time, and the list goes on….. Deep breaths and trusting in the one that has given me these breaths.

I wrote all the above yesterday, it was a pretty rough day as I’m sure you can tell. Today, this morning I wanted to get up and do the happy dance!!! In the blog I posted before this one I took pictures of the numbers on my meter from this morning. It was fantastic and a breath of relief. This afternoon has not been as pleasant, but not in the 200’s thank God! As far as I can tell I topped out at 181 after lunch, still not ideal but better. I’m so tired of checking my BG all the time. I heard before I got the pump that once I had it I wouldn’t have to check so often, I check about 10 times a day now when before I was only checking maybe 4. (Then again I blame my awful last endo for that one!) I don’t know why it’s said that people on the pump don’t have to check as often. Maybe once we think we have all the setting right it won’t be so bad. I know that if I had a CGM ( continuous glucose monitor) then I wouldn’t. When I got my pump a CGM did come with it, but when I was going over all of the pricing with the insurance company and pump company before I ordered and purchased anything they both failed to mention that I would have to change things out on a CGM just like I do for my pump and for 90 days of supplies it would be $600!!! Yeah, that wasn’t going to happen so we sent it back. A CGM is a little monitor that would go on my tummy or some where around there and would continuously send a signal to my pump telling it what my BG are. That would be nice, but not a pretty price tag! Hopefully soon this checking almost every hour of the morning and a couple in the afternoon and evening will be a distant memory. Then again, when I get pregnant that will start all over again. Geezzzz…………

Goody goody gum drops!

Two numbers I just don't see enough of!!!! After my horrible weekend and yesterday morning of highs this is beautiful!!! This is was my morning today.

Hiding Place, Lol

I think I found a new hiding place for my pump when wearing a sleeveless dress and sweater. :) hehe

Roller Coaster: Not Mr. Freeze

I’m super excited, I just ordered a new book off of Amazon.com. I went paperback, Brad did give me a tablet for my birthday last year, but there is just something about a real book. Plus, for some reason I just felt like I needed to have an actual book in case someone ever needs to borrow it. Don't know why, just a feeling. It’s titled “Breakthrough: Elizabeth Hughes”. It’s a true story of an eleven year girl diagnosed with juvenile diabetes back in 1919 just a little while before the discovery of insulin. From what I can tell by reading about it, looks like she beat the odds and survived longer than the doctors said she would before being one of the first people to ever use insulin. Apparently back then the only solution for T1D was starvation to keep BG levels down. I think it sounds like a pretty educational book and I’m sure I will be sharing my thoughts as I go through it. I found the book through a blog that I’m obsessed with reading, www.textingmypancreas.com . Kim, the author that writes this blog recommended the book. She has been T1D for 27 years, diagnosed at age 6 and reading her blog has been tremendously helpful to me. I swear it’s like reading my own thoughts at times. Reading her blog actually is what got me to start blogging. She also started the "You Can Do This Project", which is where other PWDs (people with diabetes) record themselves telling their story about how they were diagnosed, their struggles and then encouraging others out there and then posting their recording on Youtube. I love watching those as well. Again, it just reiterates what a great thing technology is and how it connects people. This has been a great avenue for me, because I have given thought to finding a support group, but if you are like me you envision what you see on TV and the movies. I don't want that, I don't want to sit around with a bunch of people crying and being depressed. Yes, I would like to have an understanding shoulder to cry on, or an ear to vent to that understands at times, (This is where my awesome hubby comes in, and he has been great!) but at the same time I'm not going to sit around and mope. That's why I think this whole new world (new to me anyway) of blogging and the online "D" support community has been so great for me. I can vent and get it out on here, and then live my daily life and tell my struggles on here without being a "Debbie Downer" all the time. 

So the reason I titled this blog "Roller coaster: Not Mr. Freeze" is because diabetes is a roller coaster. The highs and the lows are crazy! As annoying as they are, and frustrating as it can be, I was thinking about it the last couple of days and realizing what an amazing alarm system God has created our bodies to be. Having “D” I have to be so in tune with my body, but at the same time, it gives off signals when something is wrong. I know that I have talked about all complications and fears of “D” but I have not actually gone over the highs and lows of it all. I know I told my story about being in Target, getting really low and feeling confused, but now I’m going to give more detail.

The Highs

Depending on how “good” I’ve been I may or may not be able to tell if my BG has been high. Usually I can tell when I’m above 250 if it’s been for quite some time.

Symptoms are:

Head ache

I want to eat everything in sight
Nauseousness

Bloating (Like there is a huge rock in my stomach!)

Extreme thirst

Frequent urination

Extremely tired and lethargic

Feeling like I’m coming down with a cold (stuffy nose and slight sore throat-these two are huge indicators for me that I've been above 250 for a while.)

All of these tend to go away once things get back into check. I've not heard of some of these for other people, like the bloating and cold symptoms, but I've noticed it in me. I’m not a standard text book case on anything as my doctor likes to tell me so I’m not surprised if no one else get those.

The Lows

Confusion
Felling like I can eat the world
Nauseousness

Hot flashes (In the beginning of my diagnosis I would sweat like a pig being turned into bacon but now I don’t get these as frequently, these I tend to get in the middle of the night now and they wake me up. That’s how I usually know I had better go grab  a late night snack. Thank God I wake up!!!)

Shakiness

Dizziness

Tingling in my hands or tongue

Dazed

Can’t seem to focus (This one I have notices mostly at work. Sitting in front of a computer for the most part can sometimes make it hard to tell if I'm not moving around or doing much other than staring at a computer. If I've been really busy with computer work and notice that I can't seem to see straight or focus I know I had better check my blood sugar level.)

Lowest I've ever gotten was 32, highest was 402. As far as I know. (90's are where a non "D" would stay) There was a time before I was married and living in my apartment with my best friend. I had been out grocery shopping and as soon as I had pulled into the parking lot of our apartment I realized I was low. I felt like I barely made it inside. I vagley remember just eating anything in site. A bagel with peanut butter, a piece of fruit, way more that I usually would for a low, but I guess I was bad because I never sky rocketed after eating all of that. I had to be out of it though because when my roommate came home I had left my keys in the front door. 

Just because I correct one doesn't mean the other won't shortly follow. There are days when it's definitely a roller coaster and I can't seem to level out no matter what I do. 

Yuck!

You know those times when there is so much stress in your life but you keep fighting the tears to stay strong? Yet you know that something little and dumb is what's going to make you crack and that dumb thing will be the reason that you turn into a ball of blubbering snot and tears. That moment just happened for me. Dumb female and hormonal issues. Being T1 as you know by now if you have been reading this blog has its own set of emotional issues. Add in being a female, and three other hormone imbalance issues and I'm shocked I'm not in a looney bin. God have mercy on my poor husband, I don't know how he puts up with me. He is a saint for being with me.

I’m trying ever so hard to be positive, but it’s really hard sometimes. One of my biggest complaints about the pump is how hard, awkward and uncomfortable it is to wear with dresses. Growing up mom always put me in dresses for Sunday school and I hated them! Especially as I got a little older, maybe close to 4^th or 5^th grade. When I was in 2^nd grade we started going to a charismatic non denominational church and hardly any of the other girls in my Sunday school class wore dresses. I was the only one, and it sucked! Finally around the 4^th or 5^th grade she stopped making me wear the dreaded things.  I’m not sure when it happened, but some time in my early to mid twenties I started to like wearing them again. A lot! In the summer mainly because I hate shorts with a passion. Shorts are too short, not as airy, ride up the crack and all that good stuff. Sun dresses are just so nice, but I’m not sure how nice they will be this year, the first summer with my pump. I may have to learn to like shorts. That’s such a sad thing to me! All my pretty, fun dresses just hanging in my closet! What a tragedy!  But the few times I’ve worn a dress in the last couple of months with my electronic pancreas it’s been a royal pain and it’s not even hot and sticky outside yet. I either have to try and maneuver it in my bra somehow, clip it to the top of my tights, or wear this nylon/spandex thigh thing that I wear to bed that has kind of a garter strap that hooks from it to my underwear.  None of those options are necessarily comfortable especially for an extended amount of time. Imagine any of those options on a hot, sticky, humid summer day and that’s even more unappealing! Eeeerrrr……. I’ll be in a dress for a bridal shower tomorrow for most of the day. So far I have found that clipping my pump to my bra is the most comfortable place, but totally inconvenient when it’s time to bolus, as well as when I forget that I set the alarm to tell me to check my BG after a meal and all of the sudden it starts to vibrate inside my dress right between my boobs. Uck!  So, I just may be saying good bye to my dresses and hello to shorts. This is the total female in me coming out because, well…….. I don’t really have any summer tops that go well with shorts, I’m more of a jeans kinda girl if I’m not wearing a dress in the summer. What to do, oh what to do!!!

There's Always Tomorrow

I had a whole thing written, then just decided it sounded stupid, so  I'm not even going to try and sound contemplative or anything. To top off this not so pleasant day, I think my meter is being schizophrenic. Brad and I were in the car having a conversation, I was totally with it, but I did feel a bit funny so I checked my BG, 26!!!!!! Freak out time! I downed one of my emergency Capri Sun, then started to down another. My much smarter hubby in these freak out situations told me to check again. How could I really be so low and I not be acting weird? I checked and it said 98, checked on my old meter, 86. How can there be that much of a difference? Needless to say I didn't finish my second Capri Sun. Oiy vey! So I've been checking all night as I watch my BG climb, but my pump tells me not to bolus yet, I still have plenty of active insulin. I have no idea what was going on with my meter. I'm honestly not even sure if it's possible to drop as low as 26 and not go into a coma or pass out? Lowest I've seen myself is 32, and that's pretty dangerous but it does happen on a rare occasion. That's my life, but I'm going to keep plugging away. So take that stupid "D"!!!!

Apology Accepted!

Now that I have started this blog, I guess it really has been enlightening and educating to some, which does give me the warm fuzzies. I say this because recently I have had a few people apologize for things they said or did that I guess after reading what I have been writing they thought that may have hurt my feelings. I do appreciate the apologies and in all honesty it has gotten me thinking a little more about those around me, what they say to me and how I react, whether that be in my head or if I actually outwardly react. I was not offended by the comments that were apologized for, those were miniscule in comparison to other things that have been said to me. Yes, there have been times when someone has said or done something regarding my diet, or actions regarding the “D” when I have imagined strangling them or sucker punching them because of their thoughtlessness, or I just look at them like they are an idiot. Lately though, I’m trying to remind myself, that before being diagnosed, I would be just as clueless. I probably would have said things or done things myself not knowing. Although I’ve had T1D for going on 5 years, I’m still learning myself and that’s how it will be for the rest of my life. This isn’t something that a person can ever get the hang of or get comfortable with. As humans, and especially as women our bodies are consistently changing.  As we get older our hormones change, our metabolism changes,  our bodies age. Pregnancy, during and after changes things, menopause changes things. All of these things will have an effect on my “D”. Certain foods affect my BG differently than others, how active I’ve been, if I’ve been sick, if I’m about to be, on or just ending or not on my period. I’m still learning all of this, and again there are times when there is no rhyme or reason for my BG levels to do what they do. So just as I would like those around me to be sensitive to what they say about me and the “D” and how I act or treat it, I need to be sensitive to them as well, because they just don’t know.

It’s been really encouraging and I have to brag on my wonderful hubby for a minute. He has been amazing!!! He hates to read, so I was impressed when I came home from work one day right after I had gotten my glucagon and he told me how it was to be used on me if I was to go into a diabetic coma or pass out. I had left it on the dining room table and told him I needed to go over the instructions with him but he knew all about it and explained it perfectly!  I also over heard him on the phone explaining a lot of what’s been going on with me to his best friend one day and that really made me feel good. I know I have a great support in him with this and that is a tremendous comfort.

As I write all of this sometimes it’s a reminder to myself and a pep talk. Because today, has been one of those days that I just can’t figure out where things went wrong. I go back and forth between the same two things for breakfast, so why sometimes things go haywire I just don’t get it. This morning an hour after I ate I checked once I got to work. Gross! 266! My pump said I should bolus, so I did to get my BG down. By lunch I was fine. We did nacho day at work for lunch, thanks to my genius idea for the leftover huge bag of tortilla chips from the Cardinals day we did the other day. I know that 7 chips = about 20 grams of carbs. I counted out the chips, calculated a bit for the black beans I added and put it in my pump. It did the math and gave me my mealtime bolus. Less than an hour later I leave for my half hour lunch break to go to Target and I don’t feel so good. I check and I’ve dropped to 52. Great, I felt like I ate a horse and then I had to go and try and fit something else in my stomach to keep from passing out? Really? How did I go so wrong with my calculations? I sucked down a Capri Sun that I keep in my car for just such emergencies and went into Target. I was standing in the aisle looking at the fizzy flavored water trying to figure out what brand would be cheaper and still not feeling right. Seagrums was $4.00 for a 12 pack and Target brand was $3.35 for an 8 pack and I just couldn’t do the math. I kept thinking 12 divided by 4 but there was no way that one can was $3.00 when the entire 12 pack was $4.00!!! I could not wrap my brain around it, my brain was so foggy and I couldn’t figure out why I was still feeling low. I finally just got the Seagrums for $4.00, checked out and checked myself again in my car. 67, so I was climbing but not enough. I ate a small piece of brownie when I got back to work and then just sat at my desk trying to concentrate. My BG finally got on track and has been the rest of the afternoon, hopefully the rest of the evening will be a-ok and I won’t have to eat anything before I go on my nightly walk. It had taken a while for me to feel able to concentrate correctly again after my lunch time episode, but I finally figured out how I was doing the math wrong. $4.00 divided by 12 = $.33. Duh! ;)

Sweet Potato Project

Ok, maybe this is a little weird and random but I'm trying to grow sweet potatoes. I've had them in their containers for about two weeks. They are getting pretty leafy, but I woke up this morning and they are finally developing roots!!!!

Beautiful Day In The Neighborhood

St. Louis is FINALLY getting spring I believe!!! Yay! I tend to go through fazes where I work out, then just don't keep up with it. Last year at the beggining of the year I did really well, prob stuck with it for a good six month but then I wasn't seeing any results, (due to a hypothyroid I had no idea I had.) so I guess I just gave up. Well now it's warming up out side, and Brad just bought me a taser recently, so now I'm walking two miles a few times a week. It may not be Insanity or P90X but it's somthing right? And why is the taser an encouragement to walk you might ask? Because I don't care where you live there are crazies and freaks out there and I want to be able to protect myself. Below is a picture from my walk today. It was gorgeous out! This year I'm totally doing the JDRF walk which I think is in October maybe and I'm pretty pumped already!

So, appointment with the dietitian..... It went pretty well. I'm not as uneducated as I thought. I did learn a few things but it was mainly really encouraging. Another person that helped me realize all the worries, emotion and all of it are normal. Talked to Debbie again on Wednesday and she adjusted somethings on my pump. Before it was always getting frustrated because of highs, now last few days I have been getting low a lot therefore I feel like I'm eating like a pregnant woman at times. Ok, well just another bump in the road. I just read an article today that explained things about being T1D better than I can. Check it out.

http://m.theatlantic.com/health/archive/2013/04/the-diabetics-paradox/274507/

It's Not My Fault

Tuesday nights since seeing Debbie my diabetes educator I log my BG levels. Because of all the highs I get discouraged when I see the log that I have written out for the week. I feel like I'm sitting on pins and needles until I hear from Debbie once she receives my log on Wednesday morning. She calls me, has me adjust my settings on my insulin pump and encourages me that it's not my fault, that it will never be perfect but will get better if I keep doing what I'm doing. Up until yesterday, after she adjusted my pump settings last week my numbers were better than they have been in ages! I was getting excited! Then last night before dinner I was low, an hour after dinner I was low. I drank a juice box, felt really out of it. Brad wouldn't leave the house for where he needed to be until he could tell I was okay. I was pretty out of it for a few minutes. Thought the juice box was kicking in, forgot to check myself again till about an hour later and I had dropped more. I sucked down another juice box, that seemed to help but then I got high for a bit then bed time I was low again. Eeerrrrgggg.... This morning was worse though. An hour after breakfast I checked, 122 was my BG, not bad at all. In a half hour I dropped from that to 48! How is that even possible? I was sitting at my desk all morning, not running a marathon! Got myself straightened out after that for most of the day but tonight have been low. I'll feel better after talking to Debbie tomorrow I hope. I also have my appointment with the dietitian. I'm excited for that. I know that this is forever a continuing education and I will never stop learning about T1D. I'm sure I'll be writing tomorrow. I guess tonight I just needed to vent. I think I need to get another snack.

Show and Tell

Women are known to always have some kind of bag pretty much attached to them, as if it’s some sort of appendage. Handbags, clutches, purses, make up bags, diaper bag, whatever they may deem needed for the appropriate outfit, occasion or need. Each woman would probably say that they could not live without whatever their bag may be. Mine, is my little pink diabetes bag that I literally cannot survive without. I just recently decided to get something a little bigger and shove as much as I can into one bag that I can fit into my purse instead of searching in my bottomless pit. My new meter came in a pouch but it  was bulky and ugly and I just had to do something about that. Typically, I wouldn’t go with something so pink, but diabetes supplies are so drab, black and grey are the standard colors so I wanted something a little more cheery.  So this is my show and tell of items that I really truly cannot live without and that I must have in order to live on a daily basis. Really, I’m not being dramatic here………

This is my insulin pump, it's delivering meal time insulin or what's called a bolus. There are fun colors that the pump comes in, but I did choose black so it's not as noticable.

This is my pretty little diabetes bag of goodies. I know it's a little girly.

This is most of what I have to keep on me at all times. Top left, the orange and blue looking pen is my insulin pen for injections in an emergency like the other night when I wasn't getting insulin from my pump.

Under that on the left are glucose tabs, that are for a sugar low and brings me back up. But they taste nasty, at least those orange ones do. Next to those are Ketostix. If I'm really high and I'm not sure how long I have been I have to actually pee on one of these strips to see if there is something call keotones in my urine. That's probably a whole other tutorial so I won't even get into that now. If you really want to know, google it. You see my test strips that I put into my meter to check my BG, my finger pricker, there are AAA batteries for my pump, an infusion set, which the infusion set conects from the resivoir in my pump (hhhmmm... I didn't get a picture of that.) to the site which is what has the needle that goes into my stomach which I pull out once it's all connected. There is only a little tiny plastic peice of tubing type thingy left in me that the insulin goes through. This is called the canula. 

These are the infusion sets. Blue one(Quickset) is the one that I'm thinking is evil. That's the one that kept getting bent on me the other night so I wouldn't get any insulin. I'm trying it again tonight, but I'm begginging to wonder if there is an issue again because I can't get my surgar down right now. The other one(Silouhett) is a little less evil. I call it evil as well because it hurts like no other to put in, it's needle is too long for my liking but I know it works. 

This is my glucagon shot. This is used if I pass out and it only works if I have a low. If my blood sugar is too high it will not work but will not harm me. I really pray that this is never needed.

Now that I have gone through that, I wanted to take a moment and say something that I am truly thankful for. I titled this blog Beautiful, Ugly, Mystery to help me remember to look for things to be thankful for and find the beauty that is hidden among the ugly. I know that there will be times in my writing I won’t be able to come up with anything but this is not one of those times.

 I talked a bit in my last blog about the complications of having “D”, one of those things is complications with vision, and have damage to blood vessels in the eyes and throughout the body. Eyes I believe are usually where it would first begin and where they check first. When I was first diagnosed things started to go downhill so fast, although I’m convinced I had been developing the disease for about a year before being diagnosed. While getting on insulin and trying to get my BG (blood glucose) level my vision did start to go pretty bad. I have a pair of glasses from then that I only use when I’m sick or I’m having issues with getting my BG down for some reason. I use them so rarely that when I put the on one day about a year ago after being married to my husband for a year and having known him for about 3 years before that he had never seen me in them. That shows how much I have not needed them.  Although I have not had issues as far as I can tell, my doctor has been telling me to go get my eyes checked especially since it’s going on 5 years since being diagnosed. Also, they need to know for future purposes because that is an added risk for child birth. (I did say future so anyone that knows me reading this don’t go getting excited, I’m not preggers! Just hold your horses on that one!) So I got my eyes checked and 20/20 vision! Praise God! Also, no issues with any blood vessels, no hemorrhaging or anything. Perfectly fine. That was a sigh of relief! There you go for today folks hope you enjoyed my tutorial. ;)