Just when you needed your dexcom most… November 5, 2009

My husband left for a business trip today.  I worry about being by myself for a few nights, especially since hypoglycemia unawareness is an issue for me.  No problem, though – I have my trusted dexcom to keep me safe!  Or so I thought until I got home from work and checked out my receiver.

#'s are MIA

 Of course this happens on the day I need you the most!  The thing is spitting out the dreaded ???’s.  And this one has been in for 24 hours, so I really expected more from it and this point.  So I’ve shut it down restarted it, and am awaiting the night time calibration wake up call that is coming my way. 

 I have heard others chatting about the series of bad sensors they’ve gotten from dexcom recently.  I seem to be in a similar pattern.  Mine have been stubborn, usually a few restarts and I can get them to start throwing out accurate #’s, but why the frustration with the first few days?  I am looking forward to exhausting this supply and getting a new 3 month shipment. 

Here’s hoping for a good night’s sleep…

persistent highs… November 4, 2009

The past week my CGMS has been alarming non-stop.  I haven’t slept more than 3 hours at a time.  For the past three days, I wake up feeling like I haven’t slept.  I am in the throws of a THREE DAY long persistent high. 

For example, two days ago - I woke up to a lovely 273.  After bolusing 4 units, I’m only down to 180 two hours later.  I see double down arrows on my CGMS and figure maybe I could get by with eating some breakfast.  I find a BG friendly granola bar, punch in the carbs into the handy-dandy bolus wizard, and hope for the best.  Only to be foiled by another screech putting me on notice I’ve spiked over 200 AGAIN. 

Today I started to feel a scratchy feeling in my throat, and an achey malaise.  I suppose this may just be my body telling me I am about to be sick.  I gave in yesterday and started cranking up my basals.  Yesterday, I was down to running in the 140’s all the time.  Another increase and I’m back down to the 100’s for most of today.   So, crisis averted for now, but how long would you have waited until you fixed the problem?  I tend to sit on these things for a while to be sure the pattern that has emerged really is a pattern.  Sometimes life likes to throw me a diabetes curve ball and change the pattern just when I think I’ve figured it out.  

And then, once I get enough nerve to make the basal change…it’ll reverse itself and it’s a mad dash to undo all of my work I agonized over.  Why do we have to ride these roller coasters all of the time?

Daylight Savings November 3, 2009

Daylights savings…I think this meant little to me up until a few years ago when my eye issues started.  You see, one of the side effects of laser treatment is loss of night vision and glare from lights.  Having about 3,000 laser spots burned into the peripheral of both retinas means that I suffer both issues in the dark.  

And so, life is grand during the summer.  Sometimes it stays light out until 8:30!  I still have really good vision in one eye, and have been able to retain my drivers license.  I am a free person in the summer, being able to drive wherever I want.  I feel a huge weight lifted off my shoulders.  Heck, at times it feels like things are almost back to normal. 

It is the winter months I am reminded of how much my vision sucks and how permanent what happened really is.  I can get from my metro stop to my house, but that is only because I drive it every day, know the streets are well enough lit, and do not have to be able to see the lines of the lanes because I drive it so often.  My car just knows where it is supposed to go.  I am thankful every day that I live near a city with a subway system because working in the city, I can retain that bit of freedom.  But I do not live inside the city, in a suburb about 15 miles away.  It is a perfect, quiet place to raise a family.  But it is dark. 

Today marks the start of this dark season.  I am lucky that my daughter requires nothing more of me right now than my attention when I get home.  But what about when she is older and has extra curricular activities?  I found myself looking for religious school programs online the other day, and one consideration is street lighting.  I didn’t want my husband to be the sole person capable of picking her up and dropping her off, so I need to find a place that has well-lit streets between our home and the school.  I felt bad for my daughter, that I had to put myself ahead of her needs.

NaBloPoMo, taking the plunge… November 2, 2009

With NaBloPoMo starting today, I thought it may be a great way to get back into the daily grind of blogging.  A lot has happened this past year, and a lot has stayed the same.  Over the course of this coming month, I’d like to catch up on what’s going on in my corner of the DOC:

• Got a new pump!  After a unintended pump vacation (aka – my Minimed Paradigm 722 beeped the fatal button failure error while I was on vacation, hence having to use a pen for the July 5th weekend), I decided to take Animas up on their offer of a Ping for the low price of $900.  I exchanged my Minimed for a $700 credit, hence my relationship with a new (waterproof) pump began.  I’ve been on it since August, and while I do miss the simplicity of the Minimed menu and bolus wizard, I really enjoy being able to stash the pump and bolus from the meter.  Oh, and the most important question – I got a green one! 
• Got a new CGM!  After kicking my Paradigm 722 to the curb, it was time to evaluate the CGM issue.  I fear living without this technology, and honestly I had been losing my patience with my Minimed CGM.  More often than not, it was spitting out numbers way too far off from my meter.  When I calibrated to try to reconcile the two, it would send out CAL ERROR, followed by BAD SENSOR.  It would be so far off, that it would screech all night saying I am low, and upon checking my meter I never was under 90.  I ended up not wearing it for weeks at a time, and that is not acceptable!  I made the decision to switch to Dexcom, and have been amazed at the accuracy and length of time I can make a sensor last.  The one I am wearing now is on day 10, and still spitting out numbers within 20 points of my meter!  
• Baby #2…While the decision to try for baby #2 via a gestational carrier was made, the process of making it all happen has proven to not be as easy as I thought it would be.  We discovered some fertility issues on my end, went through a successful cycle in August, and I had 3 eggs that fertilized and made it to blastocyst.  Our amazing carrier went through her portion of the cycle as well, and the first attempt did not work.  We are looking forward to the next round, and I am trying to stay positive and keep myself busy so as not to obsess over things I cannot control.  
• Speaking of things I cannot control:  Our daughter is now 3 and a half, she is amazing and learning so much each day.  For only being 3, she has started showing a lot of interest in my diabetes.  She will often ask me if I am low if she sees me drinking juice, and will offer to help change my infusion sets for my pump.  I let her do the swabbing of the IV prep wipes.  She is so kind and thoughtful, I really don’t know how we got so lucky.  When I think of all the horrible things that have happened these past three years, she is certainly the one thing that I have in my life that makes all of this worth it.  

   Here’s to this coming month, good things to come, and catching up…

Doing better. August 15, 2008

Two weeks ago, I went to NYC to see a new retina specialist.  While, the recommendation was to do nothing about the chronic flashing I have in my good eye (meaning I have to live with a chronic flashing light for the rest of my life), the verdict was that a majority of cases like mine stay stable.  So I am hoping that luck will be on my side from now on, and I will try to remain positive about keeping the vision I have. 

While that is the physical side of things, I’ve been working hard on the emotional side as well.  I tried a new therapy technique a few weeks ago, and it has helped me get past this bad place where I’ve been stuck the past few months.  I highly recommend it for anyone dealing with images or events that are not resolving on their own.  It has been a really rough few weeks since the treatment, but I think I needed to hit rock bottom so I could come to terms with what has happened, and move on with the grieving process.  

The other big news is that the retina specialist said that carrying another pregnancy was unlikely to cause any more problems with my eyes.  I have been thinking very hard about this the past few weeks.  I know that I could probably do it again, but do I have the energy to?  And do I want to look back 30 years from now and wonder if complications that I have would have not happened had I not gotten pregnant again?  There are just so many doubts in my mind, and so I think that the easy out is surrogacy.  I can have another baby, and not have to worry about damage to my body, and the insane pressure of being diabetic and pregnant.  It feels so much better to say that there is a plan. 

So, I am trying to refocus myself on the coming year.  We are meeting with a reproductive endocrinologist next week to talk about a surrogate pregnancy.  I held my friend’s 3 month old baby today, and it felt so good.  I have been so consumed with everything that is going on with my health, that any image of a baby or pregnant woman has been so distressing.  It felt so good to be around a baby, and not spin into a series of thoughts about how I was going to have a second.  When I held my friend’s baby today, I thought about how much I wanted an addition to our family, and that is something to look forward to.

A big week… July 22, 2008

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

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

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

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

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.