It's Been A Long Time Since (You've) Seen (My) Face...

When I was thinking of a title for this post, I couldn't get this song out of my head:

I know it's been entirely too long since I've written, and all I can say in my defense is that I've been incredibly, incredibly busy and a lot of things have been going on in our lives.

First off, my husband got back around a month ago from working out of state and got to be home for three weeks, but then his brother's wife had their baby so he went back to run his crew while he took some time off. That was a little over two weeks ago, and even though I'm used to him being gone, it still isn't fun to see him go.

It usually isn't too bad once Baby Girl and I settle into our routine, but this time has been a little different. Instead of our usual staying at home during the day schedule, the first few days of last week I was a group leader at our church's VBS. I also had to fix a stopped up drain in the bathtub by myself, and have been washing curtains, miniblinds, and moving furniture and boxes (by myself) for the past two days in anticipation of our new windows that are being installed tomorrow. I was informed of this appointment on Saturday evening, and my husband isn't getting home until late, late tonight. All of that on top of trying to keep up with our little one, the house, and my work stuff hasn't been easy.

Besides the chaos, I've been in and out of doctors appointments trying to figure out what's going on with me lately. I've mentioned my anxiety issues before (which started with my Chiari flare-up around a year ago)...simply put, it's hard to tell when the physical feelings I'm experiencing are due to my diabetes (low blood sugar), the Chiari stuff, or anxiety. Some of the symptoms overlap, so it's basically a process of elimination. Add to that the fact that my husband has been gone for the better part of six months, and my anxiety quickly got out of hand. One ER visit, a Holter monitor test, and an echocardiogram later, the doctors haven't found any physical cause of my heart racing and palpitations. Everything has come back normal, so at this point we can safely attribute it all to anxiety...upwards of $2,500 in testing/visits later.

It's all been frustrating to say the least, and all I want is to feel better...normal. I've literally reached the point of being "sick and tired of being sick and tired." It seems like if it isn't one thing, it's another. My awesome doctor has been working diligently to balance my medications in order to gain control of my anxiety, so that's been a huge help. Since I was having actual panic attacks, I was taking a very small dose of Xanax whenever they would occur until the Celexa started to kick in. Since that failed to effectively manage my anxiety level, she upped the dose on my Celexa and prescribed me Buspar to replace the Xanax (not on an as-needed basis, of course, but as an additional means of eliminating the anxiety). With the addition of the Buspar, my anxiety has all but disappeared.  So basically, I'm taking a lot more medication than I'd like to be on, but I'm finally starting to feel human again.

Ideally, I would like to be medication-free, but obviously that isn't an option for someone that needs artificial insulin to survive. I'd at least like to get rid of my muscle relaxers for the Chiari and my anxiety medication, though. I discussed it all with my doctor keeping the future in mind, because I didn't want to be on something that would either be extremely hard to come off of or dangerous during pregnancy/breastfeeding later on. I'm by no means ready (physically or mentally) for another baby, but clearly I have to plan waaay in advance for those things!

Diabetes-wise, it's pretty much hit or miss it seems. I have some days or weeks that are really good, and some that I'd rather not think about. Highs frustrate me, but lows scare me. I've been very successful at avoiding the lows, but I still see more highs than I'd prefer to have. My next endo appointment is next month, so I'm interested to see how my A1c is. If I had to guess, I'd say it's probably going to be about the same as last time. I'm just hoping it's not worse. It's hard to explain to someone who doesn't have to monitor something that their body does naturally, but it's unbelievably frustrating to try so hard and want so badly to have normal numbers and not get them. I'm also pretty self-sufficient when it comes to my diabetes management, but I think if my numbers aren't where I like them this go-around I'm going to enlist some professional help to see what I'm doing wrong. I think sometimes I just get in a rut and either miss things I could be doing; or the opposite, I start doing too much and screw everything up.  I know a lot of it can probably be attributed to the stress I've been dealing with, but that doesn't make it any easier to accept. If anything, that lack of control just adds to the stress.

More than anything, it all makes me want a cure that much more. At our last JDRF board meeting, we were shown this video: http://www.youtube.com/watch?v=QNYI3ofxbJ8 (for some reason, I couldn't find it on Blogger to embed, so you'll have to follow the link to watch it). It's so amazing to think that in the semi-near future, people with T1D will have the ability to wear a machine (insulin and glucagon pump + continuous glucose monitor) that automatically regulates their blood sugar. Obviously it's not a full-blown cure, but it is a dramatic, exciting leap in diabetes technology. In addition, there is also current research that is focusing on encapsulating functioning islet cells for implantation to replace the body's own nonfunctioning cells, which would be very close to a literal cure in my way of thinking. Either way, my biggest hope is that I'll be able to utilize these technologies in the near future to achieve a better level of control over this disease.

With that said, I better go put our puppy up for the night and get ready for bed! My husband just made it into town, so I think I'll spend some time with him rather than my usual Facebook =)

Update Time!

Wow, I've been out of the blogosphere for a while now...I didn't realize that it's been almost two months since I last posted anything! My husband has been working out of state since mid-October...coincidence? I think not. The last couple of months have been super busy, and I don't think I've even had a chance to think very critically about anything during that time. Nevertheless, I do have some updates to share!

First of all, I went back to see my neurologist last month for a follow-up on my Chiari issues. I was to the point that I had all but decided to go ahead with surgery due to the fact that my more annoying symptoms hadn't gone away, but luckily he helped me evaluate my options more objectively. We came to the conclusion that we'd "wait and see" for a few more months since things hadn't gotten worse, and some aspects had, in fact, gotten better. After all, surgery itself presents other issues, the main one being that I would be pretty incapacitated for a couple of months...which is an issue when you have an almost-11-month-old to take care of! Because I'm no longer breastfeeding (since I started taking anxiety medication), he thought muscle relaxers would be a good option to try for my neck/back of head weakness. So far, it seems like they're helping quite a bit. I still have days when I feel much worse than others, but it's an improvement. I'm still holding onto hope that it will all go away completely again, but at this point (six months in) it's stuck around a lot longer than my past flare-ups.

My blood sugar numbers have been slowwwwwly improving. I still have a lot of (seemingly) inexplicable highs and lows, but as always it's a matter of day to day (or hour to hour) adjustment. My latest at-home A1c test showed 6.5%, so I'm hoping it's even lower than that...last time it showed 6.9% and the lab test came back 6.4%. Either way, I'm just glad things are better.

As of my last post, I still wasn't working out consistently, but I'm happy to say that has finally changed. I've been recording Faithful Workouts on DirecTV (NRB Network), and it's been great. Not only is it faith-based and therefore very uplifting and encouraging; it's also an awesome workout. At 30 minutes long, they're not too difficult to squeeze in my busy day, and every workout works your entire body. I've been encouraging my mom to start them too, especially because they show adaptations of every move for different fitness levels. They also don't require anything fancy--just some light hand weights, an exercise band, a ball, and a mat. Even so, they give you options to use if you don't have those things as well. Aside from this week (when my baby girl was sick), I've been trying to work out at least 4-5 days each week and have been fairly successful. As the program's founder Michelle Spadafora says, "if you stay faithful to your workouts, you will get stronger!" I've felt much better since I've been working out; not only can I tell a difference in my muscle tone, but everything is also a little easier because I am getting stronger. It's something I've really come to enjoy, and I can honestly say I never regret working out...especially on the days when I least want to.

This new change in my routine has meant further changes to my insulin needs, but that's to be expected. Anytime you do something different, it takes a while for you to balance everything out again. Keeping an open mind and testing frequently has helped a lot. I won't say I've figured it out yet by any means, but I'm not hitting any big lows or highs (from too little insulin) following workouts very often anymore. If I know I'm going to be working out, I just reduce my mealtime bolus by half or more, and along with a temporary reduced basal rate, I usually stay pretty steady.

In other news, I was recently appointed Secretary for our local branch of JDRF! I was hesitant to take on the position when I was first asked since I've been so busy with my husband being gone, but after I was assured it wouldn't take much time I decided to go ahead and accept it. This position also means I'm officially a member of the Executive Committee, so I'll be representing my area (which currently doesn't have a lot of JDRF involvement) in decisions and development. I attended my first board meeting as Secretary last week, and it went very well. I love going to meetings because our board's excitement about the JDRF mission is contagious. Everyone I've met through my contact with the local branch has been amazing, and I'm truly lucky to know them. They are all so dedicated to finding a cure because each has been touched by T1D in one form or another. In the past year that I've been on the board, it's been awesome to see how much they've accomplished and I'm blessed to be a part of it all.

Finally, I wanted to share an exciting development in regards to the Artificial Pancreas Project. Our local JDRF Branch Manager talked with a JDRF staff member undergoing outpatient trials of the APP a couple of weeks ago, and now there's a video up explaining it all. For anyone who has been "out of the loop" (excuse my poor attempt at d-humor), the APP is an amazing new technological development for those of us with T1D. While it's not a cure, it will make our lives better and easier...a little more normal. Like I posted on my Facebook page this morning, normalcy is something you take for granted until it's gone. The hope for the APP is that it will allow technology (an insulin pump and CGM/Continuous Glucose Monitor) to make all of the minute diabetes management decisions for you, eliminating human error and keeping blood glucose numbers closer to normal. Results have been very encouraging thus far, so I'm hoping the FDA approval process goes smoothly and quickly!


Brobson Artificial Pancreas Trial

https://www.youtube.com/watch?feature=player_embedded&v=_UvU3wsVmOA

Patient Responsibility...And a Baby Update, Of Course =)

My last posts haven't had as much to do with diabetes as much as with my pregnancy and subsequent labor/delivery, so today I thought I'd go back to my roots for this one...although I'll preface with a baby update =)

Our little one is doing great--at five weeks old, she's growing and changing every day!  I was looking at some pictures of her from while we were in the hospital and right after we brought her home, and I was amazed by how different she looks already.  I also can't believe that she's already five weeks old...the time is already going by so fast =(  We had our first health scare last week when our baby girl started coughing at night, but luckily a trip to the pediatrician (an hour and a half away) relieved our fears--she just had a head cold, and the cough was from the accompanying drainage.  Nonetheless, I was glad to have answers since we were told that while sneezing in a baby was normal, coughing was not.  Not to mention that there's so much sickness going around right now...even though we've made it a point to stay home during these vulnerable first weeks, we still have visitors and can't avoid being in public for checkups and the like.

Even though I didn't think it was anything serious, I couldn't help but worry about her--especially since I'm at home with her most of the day by myself with only my thoughts to keep me company!  I know it's only the beginning of parental worry, but that doesn't make it any easier to deal with...even as we sat in the (sick) waiting room of the doctor's office, I couldn't help but think that if she wasn't sick to begin with, she might be by the time we left due to the older kids who were coughing around us!  Thankfully, though, everything turned out fine.  At the end of the week, I had to go back for my postnatal checkup where I had an IUD (Mirena) put in...as much as we love our little bundle of joy, I doubt we'll be ready for another one for a couple of years!

While we were in the waiting room, I had to buckle the little one back into her car seat since I'd just put her in there after feeding her in the parking lot before the appointment.  I quickly realized that was a mistake, because as soon as she was uncovered, a woman with her pregnant daughter and two-year-old grandchild came over to investigate.  I know it's a first-time parent thing, but it took everything I had to not go all "mama bear" on them as the grandmother kept pushing the toddler towards our car seat telling her to "look at the baby!"  I simply finished buckling her in while my mom answered their questions, and bundled her back up!  Let me just say, I have no problem with people I know getting close to or holding our little one (as long as they're not sick and their hands are clean!), but random strangers?!  I'll be the first to admit it freaks me out, and I won't apologize.  After all, how do I know that the toddler wasn't sick?  It may sound a little extreme, but pertussis (whooping cough) can kill a baby our little one's age, so until she can get her first dTap vaccine (at two months), she's vulnerable...and it's our responsibility to protect her.  For that reason, we're following our pediatrician's advice of keeping our baby girl away from public places (and other young/unvaccinated children) as much as possible until the two month point...which means no church, grocery store/Walmart trips, or hanging out with our friends and their kiddos.  It's hard, but at this point our social life is much less important than keeping the little one healthy!

Okay, now that we've got all of that covered, down to business =)

I placed an order for glucose sensors for my CGM (Continuous Glucose Monitor) on February 10th, but never received notification that it had shipped.  On Monday, I called Medtronic and found out that the holdup was that my endocrinologist hadn't faxed the certificate of medical necessity back to them.  After having Medtronic re-fax the form, I called my endo's office to confirm they got it and let them know that I needed them to fill it out and return it ASAP...our new insurance year begins March 1st, so I needed to have my order shipped by today in order for it to be covered under this year, for which we'd already met our (ridiculously high) deductible.  They said they would get it taken care of, so in the meanwhile I checked the status of my order online on a regular basis.  By today, I was starting to get nervous.  I called Medtronic back to find out why my order still hadn't shipped, and found out that my endo hadn't checked the CGM box on the prescription form, so they were going to have to fax it to them once again to be signed.  This afternoon, I called the endocrinologist's office to make sure they received it and to give them the instructions on properly filling it out and sending it back.  A while after that, I called Medtronic (again...thankfully you get to talk to a different person every time, otherwise I'm sure they'd be tired of me by now!), only to find out that it would take 24-48 hours before the prescription certificate would be reviewed and scanned into their system.

As a result, I was forced to cancel my order...there was just no way, with the medical bills we're fixing to have to pay from the c-section and hospital stay and my husband's taxes that will be due in April (on top of our usual bills, baby stuff, and my insulin pump supplies, which run $492.80 every three months), that we need another $1,000 (the rough amount we'd be responsible for with the 20% insurance discount for my three boxes of glucose sensors) to worry about paying.  My parents offered to help, but I don't feel like that's their responsibility.  So right now, I'm disappointed and frustrated.  Disappointed that I'll soon run out of sensors, because even though I only use them occasionally now, they're super helpful in keeping an eye on my blood sugars as well as in adjusting insulin rates.  Frustrated (extremely) that everything was finally resolved to get my order out one day late, which is just my luck--a day late, a dollar short!

I'm mostly frustrated with my endocrinologist, because I suspect that the reason my form wasn't filled out and returned sooner is because he was on vacation (several members of my family also see him, and their stuff was just taken care of yesterday as well).  I have nothing against vacations, of course, but it would have been nice for his office to have called and let me know so I would have known why my order was delayed for more than two weeks.  Now I'm stuck with no sensors, which admittedly aren't as much of a necessity now that I'm no longer pregnant, but are still an integral part of my diabetes management...unless we end up meeting our deductible elsewhere, which is unlikely since my insulin pump supplies for a year don't come close to that amount, or I order a smaller quantity of supplies at a time.  I guess we'll see what happens!

Probably the suckiest part about the whole ordeal is the realization that I wouldn't have even known why my order was held up had I not been persistent about getting to the bottom of it.  As if living with diabetes isn't hard enough, I hate, hate, hate having to deal with the financial and political parts that come along with it...and on the spectrum, I'm very active in my health and d-management.  I sometimes wonder how people who aren't as involved in their healthcare do it, because I have to be very on top of things to ensure I get the care and everything else necessary to manage this disease.  It certainly begs the question of how much responsibility a patient should have in their healthcare, especially when a disease like diabetes (and insulin!) is involved...I can't help but question whether all PWD have to deal with the same things I do, or if doctors simply evaluate how much freedom (and therefore responsibility) to give their patients on an individual basis.  I honestly believe it's the latter, because I know that my endocrinologist has been pretty laid-back as far as how often he sees me (every quarter, even during my pregnancy, whereas he saw my sister every month or so during hers, and my next visit will be five months from the last...) and the level of control he gives me over my own d-care--I make the necessary changes to my insulin rates based on my blood sugar logs, and contact my CDE (rather than my endocrinologist) if I run across any problems.

I know from reading other diabetes blogs and from other PWD that I know personally that the level of control patients are given varies greatly, but sometimes I wonder if some of us are given too much responsibility when it comes to making sure things happen the way they should regarding our healthcare issues...I know in this instance, I would have rather not had to taken so much time and put so much effort into finding out why my supplies hadn't been shipped!

"Oh, the (CGM) horror!"

[I'm going to apologize ahead of time for my writing being a little disjointed as a result of my pregnancy brain coupled with the past few days being pretty stressful/crazy!]

Before I got my insulin pump and CGM (Continuous Glucose Monitor), I wrote about how scared I was of the humongous sensors for the latter (here & here).  Of course, that fear turned out to be pretty unfounded, as my actual experience was a lot less painful (and dramatic) than I expected it to be.  Since then, using my CGM has been fairly uneventful, other than a couple of slightly painful insertions (though nothing too horrible) and the issue of removing the insertion needle, which is really the hardest part and would go a lot smoother if they were somehow able to lubricate it a little better...Pulling the stubborn thing out while simultaneously trying not to remove the entire sensor is a difficult feat when it involves weird angles and a tiny grip!  Other than that frustration, my ventures with the CGM have been fairly positive.  It's been a great tool in managing my diabetes, and has provided a lot of useful information in setting my basal rates and seeing how different foods affect my blood sugar level. 

Last night, however, I had my first gusher...which really wasn't as bad as it sounds, but was stressful all the same.  I decided I'd put in a new sensor after a few days of not wearing one (or maybe a week or two...I can't remember anything these days!), so I got all my supplies together last night after my bath so I could get it done.  I picked a spot on my thigh, which is my CGM site of necessity these days (since the abdomen is off-limits due to pregnancy, and consequently my hips/"side butt" already get used for infusion sites), and "bit the bullet," so to speak--which means that I get everything ready for insertion and look away before deploying the sensor, an important step once you see the insane speed at which the giant needle is propelled toward your body.

If you want to see a video of the insertion process made by a young girl with diabetes, check out this YouTube video.  The actual insertion can be found about three minutes in.  On a side note, I may try her method of pulling the needle out before sticking the tape down since she says it's "easier"...she looks like a pro!  My favorite part is at five minutes in, when she nonchalantly explains that there "might be blood."  Yes, there might be.  A little blood=normal, no problemo; a lot=no good, sensor no worky.  Kids who deal with this disease are truly awesome and never cease to amaze me with their bravery and "matter-of-fact"-ness!

So, back to the rest of the story.  I pushed the button on the insertion device (which, if you notice in the video, involves a slight delay between the time in which you begin to depress the button and when the sensor is actually released; a torturous time that makes you question whether you really want to go through with the process or not), and after the sensor was properly inserted, prepared to anchor it down for the next several days.  Before I removed the paper backing on the tape, though, I noticed that there was quite a bit of blood at the back of the needle, not at the actual insertion site itself where it normally bleeds.  That, coupled with the unusual amount of pain that was registering inside my thigh, made me decide to remove it and try again with a new sensor.  However, once I pulled the entire thing back out, I realized that I must have hit a vein because it kept bleeding, and bleeding, and bleeding...At that point, I started to freak out a little in spite of myself, because I'm sitting there staring at a growing spot of blood on my leg and nothing to wipe it off with or stop the bleeding, or so I thought.  If I would have been able to take my eyes off the site, I would have realized that I probably had an alcohol swab or sterile gauze pad in the box of my supplies (within arm's reach), but nevertheless, I instead called for my hubby's help.  He handed me a napkin, which I then used to apply pressure to the site long enough to stop most of the bleeding.  After a while, I stood up to go throw the napkin in the trash can, and thanks to all the adrenaline and freaking out, blood simultaneously rushed to my head and to my now-throbbing thigh.  Pain resulted in both places, and I started to get dizzy, so I sat down in the living room floor and put my head between my knees, or as close to that general area as a pregnant woman can anyway.

Upon recovering from the dizziness, I got back up out of the floor and then had to make a decision as to whether or not I wanted to get a new sensor to put in.  After about half a second of reflection, I decided that I couldn't go through the process again after the trauma it caused the first time.  I figured it wouldn't hurt to leave it for another day, and allow my leg (and emotional state) to properly recover in the process.  Today my thigh still hurts, and although it isn't bruised on the outside so far, I can feel a knot under the skin at the insertion site.  For that reason, I'll use my other thigh when I put a new sensor in while the pain and swelling goes down.  Tonight I'll (probably) try again, and hopefully it will go better this time around!

How Diabetes Disrupts My Life

I've always known that diabetes has a tendency to disrupt and/or rule my life on occasion, but the last several days have really made me realize just how much it impacts my routine, especially my ability to do things out of the ordinary.

Exhibit A: My Insulin Pump & CGM.

First of all, let me just say that I love my pump.  It's given me a slightly-closer-to-normal life than I feel I'd have if I were doing shots, which is great.  And by "doing shots," of course I mean MDI, or Multiple Daily Injections, not anything involving alcohol...just to clarify =)  I love that I don't have to leave the table at a restaurant to give myself an injection in the bathroom, because I was never comfortable doing it in public.  And by "doing it in public," I mean injecting insulin into my person.  (I swear I didn't think that this post would come out sounding quite so dirty!)

Anyway, aside from the convenience factor, being on the pump has also given me a level of control over my blood sugar that I don't think I'd be able to achieve with MDI, the primary reason being that I use the "square/dual wave bolus" options A LOT--Like virtually every meal.  And that's something that would be nearly impossible to do with injections.  (For those of you unfamiliar with pumps or Medtronic's in particular, the square wave bolus allows you to administer your mealtime (bolus) insulin over a period of time rather than all at once, which comes in handy when you're eating foods with a lot of fat and/or protein.  The dual wave bolus is similar, but divides your total bolus up into some given upfront and the rest over a specified time period...useful for meals that involve the aforementioned fat/protein as well as more simple carbohydrates.)

For those two reasons alone, my pump is priceless to me.  But that's not to say that I don't resent it (along with this disease) from time to time.  The past few weeks, I haven't worn my CGM (Continuous Glucose Monitor) sensor as often as I probably should.  If it's due to the crazy marks it leaves on my inner thighs (the site of choice since I've been pregnant) or the constant beeping, I've simply had the urge to be free from it here recently, at least for a while.  So when my last sensor went kaput a few weeks ago, I just didn't put a new one in and enjoyed the temporary freedom from it for a while.  My diabetes management didn't suffer much at all-I only had a couple of highs that probably could have been caught with the CGM, and both were after eating some amazing homemade birthday cake my mom made me, so they weren't that surprising.

Sunday night, though, I decided I better get back on the CGM bandwagon and make sure I wasn't missing any consistent lows or highs.  I put a new sensor in, and was back in (beeping) business by Monday.  For whatever reason, though, the numbers I was getting weren't jiving with my meter at all.  That afternoon I hit 209 two hours postprandial (following another slice of the aforementioned bday cake), while my CGM was showing I was holding steady in the 120s-big difference!  I was frustrated, but I corrected it & moved on.  Then later that evening, I was on my Gazelle after supper and got the obnoxious HIGH PREDICTED alert.  For some reason, that alarm sends me up the wall-whether from what it means or the annoying all-caps reminder, it just makes me want to scream.  My screen was showing double up-arrows, so I set my pump to deliver a little more insulin and finished my 30 minutes exercising.  By two hours postprandial, I ended up at 54 and was dropping fast-LOW PREDICTED.  Thanks for that.

I know, I know...you shouldn't bolus from the CGM results.  But it's just so dang hard not to do when the thing is SCREAMING AT YOU IN ALL CAPS(!!!).  So, after I was setting comfortably at 101 post-low treatment, I set the low alert silence to last through the night so I wouldn't be waking up every five minutes due to the incorrect "low" numbers it was showing then.  Yesterday, more of the same, so I finally shut the thing off and restarted my sensor thinking that maybe some good calibrations would do the trick.  Today it's been better, but it's still not spot-on.

The thing about all of this CGM alarm craziness is that it wears on my already-thin patience and sanity.  I didn't realize how much I didn't miss the constant BEEPING until my peaceful couple of weeks came to an end with the new sensor.  Don't misunderstand me-the CGM is an AMAZING invention that has helped me fine-tune my diabetes management and pump therapy in a way that would be impossible without it.  BUT, as with everything else diabetes-related, it doesn't come without its drawbacks, and sometimes the cons can seem to outweigh the pros even though they definitely don't in reality.

Another of the ways that diabetes has taken over my life recently is due to the logistics of travel with a pump.  My hubby and I haven't been on a decent vacation since our honeymoon a year and a half ago, so we've been grasping for chances to get away, if only for a weekend.  The thing is, these attempts are complicated by the very real limitations of being on an insulin pump.  We can't accept last-minute invitations to the water park with our friends, and now that I'm pregnant, even a well-planned water-related vacation is out of the question due to my reluctance to switch to shots for the weekend...the reason being that the last time I was on shots was in January, and I don't want to completely throw off my diabetes management routine (and overall awesome blood sugar #s) for a weekend at the lake, no matter how great it would be to spend time with the hubby's family.  We don't get to see them very often, but I also don't want to risk damage to our little one, no matter how remote the risk of a few higher-than-normal #s.  In this case, the long-term definitely outweighs the short-term, so I had my husband tell his sister that although we want to join them, it just isn't possible right now.  I could be a good sport and go anyway, but I know that it would mean being landlocked in the extreme heat by myself, so I'd rather just stay at home.  I also explained to him that although I may make it look easy and effortless (ha!), dealing with this disease is an everyday challenge even under the best of circumstances, and can be downright maddening when I don't have the standard level of control I'm used to...I'll be the first to admit that I'm a bit of a control freak when it comes to all things diabetes-related, especially now that there is another little life that is directly dependant on my decisions.

Although my hubby understands the dilemmas I face thanks to my diabetes, I know that deep-down, on some level, he has to resent this disease as much as I do.  After all, it isn't just my life that is limited by diabetes, his is too-and if it sucks for me, I know it has to suck for him.  The past several weeks, though, have been especially impacted due to the simple fact that I'm pregnant in addition to having diabetes, which adds a whole new level of limitations.  Even if the water itself didn't limit me from 90% of the activities at the lake, being pregnant prevents me from doing the other 10%.  Please understand that I'm not complaining about being pregnant; I'm just explaining (as I had to do with my husband the other night) that it does realistically limit some of the activities I can do.

We talked about going to Carlsbad, NM, with some of our friends, which I was all for...Even I can walk through the caverns and the zoo they have there!  But just today at lunch, some of my hubby's friends were talking about the vacation they just got back from in Colorado that involved white water rafting and such...his eyes lit up, but all I could think was "Not so fast, buddy...you know that's out of the question on SO many levels!"  Hopefully one of these days we'll agree on a mini-vacay that involves activities we can both participate in and enjoy, but until then I have a feeling I'm going to be resenting my diabetes for all the limitations it puts on my life-and my husband's.

The CGM...It's (Unfortunately) Infectious

I'm so glad it's Friday!  I look forward to the weekends so much...even though Saturday is mainly a catch-up day (laundry, housework, yard/garden stuff, etc.) since I work full-time during the week.  Then, of course, there's my other job: the 24/7 management of my diabetes.  Someone without the disease may think I'm being over dramatic, but any PWD knows I'm not...It takes A LOT of time, effort, and energy on a daily (and sometimes hourly or minute-to-minute) basis to keep your numbers under control.  It's something that I honestly think no one understands until they've walked a mile in those shoes.  I'm not complaining (well, maybe just a little bit), though, because the alternatives (complications, death) aren't so attractive.

I mentioned in my last post that my CGM has brought my attention to overnight lows that I've been unknowingly experiencing, probably since I started insulin therapy.  My CDE and I were both surprised, and were able to fix the problem almost immediately with a couple of basal rate changes.  Now I'm hoping that I'll actually have energy during the day, and be able to get out of bed at a decent time in the mornings...those nighttime lows have a tendency to drain all of your energy without you even being aware of it.  I haven't had many low alerts from my CGM since we made the basal rate changes, so I'm going to file that away as a success!

In other CGM news, I removed my first sensor on Wednesday night (I'd had it in since last Friday, so for about five days), and noticed that the site looked like it might be infected...It was red, puffy, and painful.  I took a picture of it and emailed it to my CDE (who is also an RN), and she called me back last night saying it could just be irritation from having a foreign object in my body or a staph infection...yuck.  Today it looked better, but it still hurts.  I could tell last night that the path of the sensor probe under my skin is puffy, and that's the part that is most painful.  My CDE called my endocrinologist, and he wrote a prescription for Bactraban for this and possibly for future infections (although I hope that isn't the case!). 

She also told me to only insert sensors after taking a bath and using Dial antibacterial body wash to make sure the area is 100% clean.  Medtronic specifically says not to use any sort of skin prep before inserting sensors due to possible interference with proper functioning of the sensor probe itself, so the only option for skin prep other than a good wash in the shower/tub is swabbing the area with an alcohol pad.  I've also read online that it helps to keep the sensor site dry after showers and not completely sealing off the IV tape to allow the site to "breathe".  Anyway, I figure that if I try all of these things, maybe I can prevent future infections...as Ben Franklin said, "An ounce of prevention is worth a pound of cure."  Not so helpful when it comes to Type 1 diabetes, but great advice for site management.

Other than those issues, having the CGM is (somewhat literally, apparently) infectious.  Yesterday I felt lost without it...It's so nice to be able to push a button and have more than just an educated guess of where you're at.  More than that, it helps you better tailor your treatment to how your blood sugar responds to different things.  For example, I've been consistently having after-breakfast highs.  On my CGM, I can see my BG climbing and "head it off", so to speak, before I hit that high point, either with exercise or an extra dose of insulin.  I can also see how specific foods affect my blood sugar, and bolus accordingly.  The thing about this (and every other diabetes managment tool out there) is that it's only that-a tool.  You still have to use it appropriately and understand its limitations to get the most out of it.  I wasn't sure if I would like the CGM or not after all the negative stuff I'd heard about it, but I'm only on my second sensor and I'm already sold.  And the pain factor?  Well, the first one didn't hurt at all, and the second one wasn't bad either.  I don't know if I've just lucked out, or if it really isn't as bad as some people make it out to be.

I hope you all have a wonderful weekend, and here's to hoping for a healed site by Monday!

CGMs & Gazelles

As many of you know, I went for CGM training on Friday.  Since then, my experience with it has been great overall--aside from the incessant alarms the first day or two (I stopped counting at 36 on Saturday afternoon)!  The CGM has already proved its worth for me simply because it alerted me (over and over again) of the nightime lows I've probably been experiencing since I started insulin and the pump.  That first night, I chalked all the alarms up to the CGM not being calibrated correctly with the meter...But then night after night, I've consistently been running in the 60's & 70's-or lower.  The lowest reading I've had on my CGM was 40 in the middle of one night-the lowest # I've ever had.

Here are a couple of graphs of my CareLink data:

I can't even begin to tell you how ecstatic I am to see 114 as my BG average since I've been on the pump...Well within the range I need to get that 6.0% A1C (which corresponds to an average of about 120-126, depending on which source you read).  And the last few days have been awesome...My sensor glucose average is 93, so I'm super excited about that too.  What's more, my average curve falls (mostly) within the normal range we've set (70-120).  Now if I can just get most of my readings in that range and smooth out my curves even more...And there's that perfectionist coming out in me again!  My CDE said my graphs were laying on her desk while she was meeting with another patient who's been chasing highs and lows for the last six months, and that the lady told her, "Whoever that is, I hate them.  I didn't know curves could be that smooth!"  Every time I talk to my CDE about numbers that I perceive as out-of-whack, she tells me that I'm actually doing great..."probably the best I've ever had one of my pump patients do," she says.  I told her yesterday that it's probably easier for me too since I'm still most likely in the honeymoon stage (and still producing some insulin of my own), but she reminded me that even if that's the case, the experience I'm getting will help me with my control if my numbers do start to creep up.

All of this makes me realize how great technology is...If it weren't for the CGM, I would probably never have known about my nighttime lows.  Even if I tested again at night like I do periodically, I would set my alarm for 3:00AM, before the lows I've been having even set in.  My CDE called yesterday after reviewing my data on CareLink (the Medtronic software for the pump & CGM), and we made some changes to my basal rates.  She told me I was doing very well, but that we needed to take care of those lows simply because once I am pregnant, I don't need to be running in that lower range (where the baby doesn't get the nutrition it needs). 

I've had to remind myself, though, that I shouldn't bolus based on the CGM readings...I've done that a couple of times to catch the highs showing up on my graph, only to end up low later on.  In fact, I did that just today at lunch, so I'll probably end up low again at the two hour mark.  It's hard not to correct those vertical lines when you can see them happening, though!  On the bright side, seeing those jumps definitely gets me up and moving, whether it's running back and forth in the office (I work with my parents) or out in the parking lot with our dog...Whatever it takes to get those double upward-pointing arrows off the screen!  Those little bursts of movement can add up, so I'm getting a little more activity on top of the purposeful exercise I get everyday after work. 

Speaking of exercise, since I've been working out consistently, I've felt so much better.  I wouldn't say I've had a huge increase in energy, but I feel less stressed throughout the day...And call me crazy, but it's seemed to have an impact on my BG numbers, which have been consistently lower since I've started.  I don't know if it's from the activity itself or the decrease in stress (or both), but I like it.  And although I haven't experienced that huge increase in energy that everyone talks about in regards to exercise, I think I'll get there once my numbers are more level (especially during the night).

In my last post on exercise, I wrote about my favorite form of exercise, the Gazelle.  I bought it in January on Amazon (they had the best price and free shipping) after doing some research into different exercise machines and their reviews.  The Gazelle fit the bill for me due to its relatively low price (good ellipticals are $500+) and an overall high level of customer satisfaction.  Plus, it just looked fun.  I remember seeing the infomercials for it back in the day (who hasn't?!), and even though they're cheesy, I thought the actual movement would be a fun (and low-impact) form of exercise...And I was right!  I recently ordered another four workout DVDs to go with it (the Gazelle itself comes with one).  Yes, the cheese factor is definitely there (mainly due to Tony Little himself, I think...I mean, come on! A hugely muscular dude with a curly blond ponytail?), but it's honestly a good, fun workout.  I love it, therefore it's not hard for me to use it everyday...In fact, I actually look forward to it. 

Well, I've got to go...I was just alerted that I'm low again (surprise, surprise), so I have to take care of that!

CGM Training & Other Changes

“The key to change... is to let go of fear.” -Rosanne Cash

Change has always made me anxious (at best).  At worst, it makes me feel like my world is crashing down.  Six months ago, though, my world did turn upside down thanks to diabetes...And you know what?  I came out on the other side just fine.  A little shell-shocked, but fine.

I wrote last month about what I've learned since the day of my diagnosis.  It's taken six months, but my life has regained some semblance of "normal" (whatever that is!).  In the past month or so, I also feel like I've finally come into my own in regards to my diabetes.  The first month I was on the pump was largely a time of trial and error.  I had to learn in real-time what effect certain foods have on my blood sugar, and how to correct for them with insulin.  For example, pizza, ice cream, and hot dogs all require a dual-wave bolus for me...If I do it all at once, I end up with a postprandial high, but if I do some immediately and the rest over 30 minutes or so, I'm fairly reliably within my normal range two hours after the meal.  That may seem insignificant or irrelevant to PWOD (a person/people without diabetes), but as anyone dealing with this disease knows, it's huge...Normal is always wonderful when it comes to your blood sugar.

Each time I have one of these breakthroughs, I gain some more confidence in my ability to deal with diabetes.  On those rollercoaster days when you devote most of your energy to chasing highs and lows, this confidence takes a hit, so even the smallest "light bulb moments"  are more precious than diamonds to me.  After all, this is my life that we're talking about, and all I want is to live a long, fulfilling one in good health.

With this in mind, I want to come back to the concept of change...and fear.  Aside from the pump, the most amazing technology we have in managing diabetes today is the Continuous Glucose Monitor (CGM).  I've written in previous posts about the fears I had about the CGM.  After seeing the sensors in person and reading horror stories about their insertion online, I was understandably anxious about actually using them, despite the amazing asset they are to diabetes management.  However, as Rosanne Cash's quote above makes clear, you have to overcome fear in order to be successful with change.  I finally decided that the benefit I would get from using the CGM far outweighed any (hopefully) momentary pain or fear I might experience.  In short, I made the decision to "suck it up" and deal with the pain when I got to it, because the entire reason I'm making such an effort to control this disease is definitely worth it.

I tell you all of this to give you some hint as to my mindset yesterday when I went for CGM training.  Determined, (finally) not anxious (well, maybe a just a little...it's a huge needle), and excited about the opportunity to use such amazing technology.  My mom came with me to meet my CDE at a coffee shop, and we got down to business.  It turns out I had to get the scary part over with in the beginning, because the sensor takes 5-15 minutes to wet with interstitial fluid.  I picked my spot (lower right abdomen), swabbed it with an alcohol pad, and took a deep breath (along with a couple of glucose tabs, because I didn't need to be shaking for two reasons).  My CDE showed me how to use the inserter, then handed it to me for the big moment.  She helped me place the inserter at the correct angle at my stomach, then told me to press the button.  I did (a little nervously), but nothing happened. 

My CDE checked to make sure everything was in place, then had me try again.  I didn't realize it until it was done, but as I was pressing the button the second time, I wasn't looking at the insertion site...I don't really remember where I was looking, but all I know is that it finally went off, and then it was done.  I vividly recall going, "Oh"...Not a huge "OH!", just "Oh."  I was pleasantly surprised at the virtually pain-free insertion, and the relative lack of bleeding at the site.  We had some issues with sticking the adhesive down, but the sensor magically stayed in its place, so we connected the transmitter and the rest is history.

Seven hours after inserting the sensor, my CGM was reading within 1 pt of my meter.  No, I don't have one of those nifty pictures for proof, because it was dark and we were in the car on the way home, but I promise you, it happened!  My meter was reading 126, and the CGM 127.  I wasn't so lucky through the night, though.  My alarm went off 9 times between 1:00AM and 6:00AM, when I finally silenced the alarms.  It's been better since I calibrated it upon getting up this morning and again before eating, but I've still had quite a few alarms today.  I'm going to email my CDE and see if she'll let me change the lower limit on the sensor alarms so that maybe I won't have a constant beeping at my side!  Other than that, everything is going great.  My BGs haven't topped 162 in five days, and my average is steadily coming down.  I'm hoping that by using the CGM, I'll be able to bring it down even more.

Diabetes Blogging: The Good, The Amazing, and The Reality

Yesterday I posted about the anxiety I've been feeling in regards to using my Medtronic CGM once it comes in due to the horrific reports of blood and pain I came across in the diabetes web community. 

Exhibit A:

"The only thing about the Medtronic CGM that absolutely crushes my soul is that hollow spear you insert it with, the thing Medtronic calls a "needle". A needle is what is on the end of my Symlin pen or perhaps my infusion set. They should describe it accurately, like this:

'A large, hollow, very sharp nail that enters with the grace of an angry bee's stinger and provides an additional 5 to 10 seconds of throbbing, intense pain.'" 

--Jason, tudiabetes forum member

Exhibit B:

Another tudiabetes forum member suggested that Medtronic redesign their transmitter and sensors to not be so awkward and bulky, and to not have a needle "with its own zip code". 

And another poster compared it to being shot.  Yay.

But then I came across Too Sweet, a blog written by the mother of a beautiful little girl with Type 1 diabetes, and saw that she had good things to say about the MM CGM.  As far as the pain factor, her post "Well, at least she'll never know the difference." shows that it's just part of the countless uncomfortable (and many times painful) things we do to keep our diabetes under control.  After reading several of Amy's posts, I realized how lucky I am to have the luxury of dealing with this as an adult.  I can't imagine how difficult it must be to have to deal with diabetes in childhood, both for the child and the parent.  While I'm not looking forward to blasting that monster of a needle into my body, I now see that it's doable.  After all, if a brave little five-year-old girl can handle it, surely I can!

One thing I've learned in the past five months since my diagnosis is that the diabetes community is wonderful.  They stick together, offer encouragement and support, help each other through the inevitable storms of this disease, and praise one another's successes.  It reminds me of the definition of love in 1 Corinthians 13, 4-8:

 ⁴ Love is patient, love is kind. It does not envy, it does not boast, it is not proud. ⁵ It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. ⁶ Love does not delight in evil but rejoices with the truth. ⁷ It always protects, always trusts, always hopes, always perseveres.
 ⁸ Love never fails.

The diabetes community is a loving one if there ever was one.  It's a club that no one wants to belong to (I don't know about you, but I sure didn't sign up for this!), but once you find yourself a member, you see that it's one that won't let you down.  Diabetes bloggers provide an endless source of information for newbies like me, and are truly an inspiration for all of us.  They are proof that this disease is a manageable (albeit annoying, uncomfortable, and inconvenient) one, and that it is possible to live well with it.  Anytime I have a question related to diabetes, whether it's related to medical advice or everyday living with the disease, I know that I can find what I need online.  Yes, at times it's scary, but sometimes reality is too.  At the end of the day, all we can do is our best and hope that it's enough.
 
So, in conclusion, I want to thank the amazing d-bloggers I've looked to for information, support, and endless wisdom over the past five months, whether they know it or not.  Their knowledge, kindness, and sense of humor have gotten me through many days of doubt and feeling alone with this disease, and for that I am incredibly grateful.
--Kerri @ sixuntilme
--Lyrehca @ Managing the Sweetness Within
--Lisa @ Lisa From Scratch
--Amy (& Emma) @ Too Sweet
--Everyone on tudiabetes

Pumpin' It Up...And the Horror Stories of Using a CGM

This weekend, my husband and I had our one year wedding anniversary (yay!), and I got a coat of paint on my bathroom walls (which I've been meaning to do forever).  In D-news, I thought I was going to make it through the weekend without a reading over 200, but no such luck.  When I checked before bed last night, I was at 212...Bummer.  I'm sure it had something to do with the fact that I threw my usual dietary caution to the wind in celebration of our anniversary--I had chocolate-filled croissants and fruit for breakfast, a Dairy Queen grilled chicken sandwich & tater tots for lunch, popcorn w/chocolate-covered almonds at the movies, and fajitas for supper.  Then, after we got home, I had a couple of glasses of Banfi Rosa Regale.  I thought I'd correctly bolused for all of it, and was doing fairly well until that sparkling wine...which, I have to admit, was pretty sweet, and I think may have been the cause of my elevated BG.  Nevertheless, I couldn't do much about it at that point, so I went to bed and woke up normal (or as normal as I can be) this morning.

This afternoon, upon arriving back to work from lunch, I got a call from my Medtronic rep informing me that they would be shipping my pump and equipment today and that I should receive it by Wednesday.  I'm super excited to get my pump and start using it, but that excitement was curtailed somewhat when I started reading about the Medtronic CGM...Blood, scar tissue, pain?!  OMG.  Pain, I can deal with...To an extent.  Hello, I give myself 4+ insulin injections per day on top of stabbing my finger 8+ times.  But a 1/2 inch probe (which means a 1/2 inch needle for insertion) being propelled towards my fragile body with an insertion device?  Oh boy.  I've seen the sensors in person, but never thought much about them (past "Wow, that's a long needle..."); however, reading all of these forums and blogs is making me anxious.  I've had tiny bruises and bumps and even a little blood with my injections, but nothing compared to the torture described on the diabetes web communities.

When I decided to get the CGM in addition to my pump, I was only thinking about the advantages it would give me in monitoring my BG levels, and that this would be incredibly helpful in bringing my A1C down to the proper pre-pregnancy range.  That needle didn't scare me then because I figured I would just "deal with it" as I have with everything else in the past five months.  Sticking my finger x times/day?  No problem.  MDI (Multiple Daily Injections) insulin therapy?  I'm your girl.  But as the reality of using the CGM and inserting the sensor is finally hitting me, I'm scared.  The bloody pain and discomfort described by other users has me holding my breath in the way I do when I'm anxious about impending doom.  It has me questioning whether or not I made the right decision in going with the Medtronic CGM, and if I'll be able to get past my fears to actually use it as it's intended.

The conclusion I've come to is that I'm going to have to just not think about it, put my big girl panties on, and deal with it.  Because at the end of the day, all of this pain, discomfort, and general annoyance is worth it.  As long as I can reach normal (or as near-normal as possible) BG and A1C numbers, which will give me the best possible chance of having a healthy pregnancy and baby, I'm in it for the long haul.  Hopefully, the horror stories of the Medtronic CGM will just reflect human tendency to complain about bad experiences, but not bother sharing good ones.  And to be fair, they haven't all  been bad...Amy of Too Sweet, a mother of a beautiful little princess with Type 1, sings its praises and emphasizes what a wonderful tool it is in managing such an unpredictable disease.  Many users point out that realistically, you do have to be committed to wearing the device and acknowledging its limitations to fully appreciate what it can (and can't) do for your diabetes management.  And, let's face it, most things related to managing this disease aren't the most comfortable things in the world to do.  I suppose all we can do is take it one day at a time and make the most of what we're given.  I'm very thankful that I have the opportunity to use this tool, and despite my reservations, I'm hoping and praying that it will exceed my expectations and give me an extra edge over my D-life.