25 and Counting

A big week… July 22, 2008

Filed under: complications,Family matters — Emilie @ 1:41 am
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This week is going to be a big one.  Physically and emotionally…

On Thursday, I am going to NYC for an appointment with another retina specialist.  This will be the 3rd opinion I’ve gotten in the past two years on my retinopathy.  Unfortunately, there is some traction on my left retina (after a vitrectomy last year, LOTS of laser, and avastin injections).  I am anxious about this appointment because I fear that the result may be more surgery.  Or worse, that nothing can be done.  This is my good eye I am working on, my right one had a bad detachment 2 years ago, and it doesn’t function well on its own.  

I’m also going to be asking this retina specialist about a second baby.  I think that I have come to the conclusion that even if he says there’s no reason for me not to get pregnant again, I may opt for other means to having baby #2.  I admit I am not in the best place emotionally right now, and I know that I need a lot of cash in my emotional bank to get me through a diabetic pregnancy.  With baby #1 going to preschool in the fall, getting potty trained (another challenge in iteself!), working full time, AND taking care of myself, I think I may be stretching myself too thin. 

So this appointment is a big deal.  I am hoping it will give me an idea of what the next year will mean for me.  Or not, so I can know and move on.

 

Bad report card… July 10, 2008

Filed under: A1c results,BG numbers — Emilie @ 2:31 am

Last week, I blogged about CGMS needing to be covered by insurance companies to prevent things from happening like the car accident I had this past spring.  I have been seeing my endo more frequently sice then.  Right after the accident, my endo recommended me keeping my numbers higher so that I could regain the feeling of being low when I was higher.  He wanted my pre-meal numbers between 120 – 140 and post meal numbers higher than that. 

This was a huge blow to my ego.  I have worked so hard on my control for so long.  My A1c’s have been in the 6’s since 2003.  And in the 5’s when I was pregnant.  I knew it would be hard to see the higher numbers.  I didn’t want to do it, but my endo said there wasn’t an option.  The alternative was having another episode and possible suffering permanent neurological damage as a result. 

So I have spent the past few months running slightly higher.  And the result at my endo appointment yesterday?  An A1c of 7.4.  I was so shocked, I have not had one this high in a long time.  It is really hard to swallow even though I know that I am just doing what I am told.  That number really defines how I feel about my success as a diabetic.  Good a1c, I’ve done a good job.  Bad a1c, I have been slacking and need to work harder.  It is a report card to me. 

On a better note, running higher has eliminated the bad lows I was having before.  I don’t download my data enough from my pump, but looking at the reports that I printed for my appointment, it looks like I haven’t had a bg lower than 60 in a few weeks.  And, truth be told, a few times last week I felt low, and saw a 61 on my meter.  Before I was not feeling them until at least 45.  Before this, I would not even test most times because if I felt low, I knew I was really low.  So my endo was pleased with this development.  He said that a 7.4 was not a huge sacrifice for eliminating the bad lows.  So I do have to feel good about that.

 

REQUEST FOR CGMS: (hopefully won’t be) DENIED BY INSURANCE July 2, 2008

Filed under: BG numbers,CGM's — Emilie @ 2:38 am
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Today, thanks to Gina at Tu Diabetes, is CGMS Denial Day.  While I am still awaiting word from my insurance company as to whether or not my Mini-Link CGM sensors will be covered, I wanted to join others in making sure insurance companies understand that CGM coverage is medically necessary.

I’ve had several bad hypoglycemic episodes, and I’ve noticed that they’ve become more frequent since I tightened up my control after I got married and starting thinking about pregnancy.  While my A1c’s dropped to the low 6’s, the cushion I had between being low and not low diminished.  Being in the 60’s pre-meal was a good thing, especially when pregnant, it gave me more room to bounce from 2 hours post-meal.  This way I ensured my 2 hour readings never went over 125 while I was pregnant. 

With these lower numbers, I’ve become unaware of my lows until they hit in the 40’s.  The first bad low happened when I was 9 weeks pregnant.  I had apparently just hit a point where my insulin needs were dropping, and my changes did not keep up.  My husband and I woke up on Sunday morning.  I was apparently telling him about a necklace I had gotten the day before.  When he changed the topic, I kept talking about the necklace, and was not able to answer his questions.  He got concerned, asked if I was low, and when I didn’t answer, he pulled out my meter and tested me.  37 flashed back at him.  He fed me some orange juice, tested 5 minutes later and I was stil in the 30’s.  He called 911.  I came to as the paramedics were pumping dextrose into my forearm.  I was embarrassed, and very scared of what harm I may have caused our baby.   

AFter Naomi was born, I had another incident where I woke up unresponsive.  Josh tested me, I was low, and he could not feed me juice, so called 911 again.  I came to on my own before the paramedics arrived.  Every night, Josh asks me if I have tested.  I know he is scared that I will wake up unconscious, as my lows don’t seem to wake me anymore. 

If these incidents are not reason alone for coverage of a CGMS, my continued hypoglycemia unawareness struck again this past spring as I was driving home from work.  One Friday, I ate lunch at 11:30, gave what I thought was an appropriate amount of insulin to cover the carbs I ate, and got into my car at 2:00.  My pre-meal blood sugar was 124.  I did not test before I got into my car, and regret this still today.  The last thing I remember was driving past the White House.  When I came to about 10 miles away from where I remember last, I was being pulled out of my car by the Fire Department.  They kept yelling at me – is your bloodsugar low?  I could only look down at my clothes, trying to remember who I was and what I was doing here.  I hope that I had just been having a bad nightmare, that this was just a really bad dream that I needed to wake up from immediately.

I hit 5 cars and caused thousands of dollars worth of damage.  I am thankful that my daughter was not in the car with me at the time of the accident, and that I did not hurt anyone else’s children.  I have to live with the regret of not checking my blood sugard before driving, but I would not be able to live with myself had I caused anyone harm. 

The day after my accident, after I got home from the hospital, I called my Minimed Rep and told him I needed the CGM asap.  I opted to pay out of pocket, because billing my insurance would add a few days to me receiving it.  I have been working to keep my blood sugars higher over the past 3 months, in order to hopefully regain some awareness of lows when I am higher.  But my CGM makes me feel better about not feeling a suddent dip when I am driving.  My husband knows that I will wake up conscious the next day. 

Anyone who says this device is not medically necessary does not understand the world of fear that I live in on a daily basis.  If there is technology out there that can alert you to lows before they become life-threatening, why would you deny this to somebody?  And why would you wait to allow someone to have this technology until AFTER an incident has already happened?  Aren’t our lives worthy enough of having the most protection possible?  I know the technology is new, and I do know for a fact that my CGM spits out bad numbers from time to time but, good lord, it is better than NOTHING. 

Please do not deny my claim for coverage for a device that can help me be the best mother I want to be.  Please do not deny my claim for coverage so my husband does not have to worry about me every night when we go to sleep.  Please do not deny my claim so I can stop living in fear every time I get in my car.

      

 

Life as a graph… June 25, 2008

Filed under: BG numbers,CGM's — Emilie @ 2:00 am
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Don’t get me wrong, this sensor is really great.  When I am creeping up, it alarms to tell me I have eaten too much, or given too little insulin.  When I am low, it alarms to tell me I am heading into dangerous territory.  I can sleep better knowing I will wake up conscious, or without a headeache from a prolonged high overnight. 

BUT, as nifty as this piece of technology is, it is not fun to downloan your bg stats, and see this:

Not pretty.  It makes me cringe…no wonder I feel like ass most days.  This pretty much sums up all of the roller coaster ups and downs I go through on a daily basis.  It is days like this that makes me feel like those target range numbers I program into my pump are a pipe dream.

 

In search of new real estate… June 18, 2008

Filed under: CGM's,insulin pumps — Emilie @ 1:50 am

My pursuit of better bg numbers has led me to a real estate issue  I do not have enough stomach space to comfortably wear an infusion set and sensor in my stomach, AND have my pump clipped to my waist…Sommething had to give, so I have spent the past week experimenting with new sites for my infusion set.

I thought for sure, it would hurt to jab a big old infusion set into anything but my stomach, but I’ve been surprised.  I started last week with my leg.  It felt fine, and didn’t bother me at all, but got really red on day three.  (I won’t tell you how long I usually go in between site changes, it’s really not healthy.) 

So, on to the next leg.  This site went in over the weekend, and involved a couple of trips to our neighborhood pool.  I decided I was going to suck it up, and sport my pump accesories on the outside.  I typically have an inufsion set in my stomach, and my pump clipped to a the bottoms of a tankini, so it’s not too obvious.  But with the infusion set on my leg, and the tubing visible, it was a little scary.  I ended up doing it, and truth be told, in the kidie pool, parents are more focused on their kids than anyone’s mediccal devices, so I felt ok with it.

Enter night before last.  My leg site that i was so proud of was hurting.  It started out a little concerning in morning, then moved quickly to the anything above a 2 unit bolus would send shooting pains in my entire thigh category.  When I pulled it, a big blob of puss came gushing out (eeew, sorry).  I have never had an infusion set do this to me, and two days later there is still a welt in the spot that hurts to the touch.   

So I was back to square one…where else could I sstick one of these things?  I started thinking back to my childhood shots, and came up with my hip.  I busted out the IV prep wipe, cleaned the area, and jabbed it in.  Fortunately, my husband was near bc I could not figure out how to pull the needle out on my own.    With his help, my hip site has been holding steady for a few days now.  i think it will be good at the pool, too, since it conceals everything. 

So, I am pleased with my real estate venture so far.  I think I’ll come up with something that allows me to wear this darned sensor and be a bit more comfortable. 

 

Attempting to get back on the wagon… June 10, 2008

Filed under: Uncategorized — Emilie @ 1:51 am

The minilink sensor is in, I have been checking more, catching highs before they become too high.  That said, my numbers still suck.  I spent most of the day trying to bring down a persistent high, only to be foiled by a bad low before dinner.  Now, of course, my CGM graph is escalating up towards the buzzing range.  Right when it is time to go to sleep, of course.

In better news, I did give in and up my basal rates.  It just didn’t make sense that I’ve been high for two days straight.  No amount of bolus brings it down.  Why do I seem to go in these cycles?  I guarantee a month from now, I’ll battle some lows nonstop, then go down on my basals, only to repeat things full circle. 

I’m just not one of those diabetics that stays on track.  It is frusstrating, but I am dedicated to working on it.  I had such great control while pregnant, my A1c’s in the 5’s.  I just need to find the motivation to do it again. 

 

Diabetes Vacation… June 7, 2008

Filed under: Uncategorized — Emilie @ 2:28 am
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I have been on a diabetes vacation the past few days.  Only testing 2 or 3 times a day, persistent highs that won’t come down, and my minilink cgm is getting lonely sitting on my nightstand.  I need to wake up tomorrow, put that darned sensor in, and get back on track. 

I know I can do better.  Why don’t I?  I think it’s easier not to test sometimes when I know I am high.  Sometimes it’s just easier not to see the bad number show up on the meter  If I don’t test, it’s not there.  And if I don’t put in that sensor, I don’t have to hear the alarms confirming I am not doing a good job.   

But it is there.  I wake up high, and I feel like I haven’t slept.  I have a bad mood swing, and I know it’s because my numbers could be better.  I need to get back on the band waggon.

Ok, I am putting a sensor intomorrow morning.  My vacation is over.