All posts by Stacey D.

Again?

Complications, Sickness

Right after Memorial day, I came down with an illness.  I was sick for almost 2 weeks with multiple trips to the doctor to rule out pneumonia.  It was diagnosed as severe bronchitis and warranted a dose of steroids to finally get rid of.  It was one of my sickest moments and I was hoping to never have that again.  Ever.

Fast forward to the end of summer, Labor Day being just a couple days ago.  And I am sick again.  With just about the same symptoms, just not as severe.  Needless to say, I am not a happy camper.

What has me bummed the most is I don’t understand why I keep coming down with such illnesses.  Yes I know that being a person with T1D, my immune system is compromised.  But I have been trying to stay healthy, especially over the past 6-8 weeks.  I have been exercising about 5 times a week, making healthier food choices, and adding a nutritious meal replacement shake to my diet.  And yet I still got sick with not just a little head cold.   Is diabetes really to blame?  Would I be getting so sick otherwise?  Do you feel like you get sick a lot too?  I know I will get better but it’s been a week already and I’m frustrated with feeling so bad.  Right now, I am hating this and wish there was something to blame.

We Can Do This.

Advocacy, BG Meters, Community, Education, Emotions, Events, Milestones

Happy Friday everyone!  And a happy Labor Day to my US friends too!  I’m not sure how it got to be the end of summer already but here we are … September is approaching and pumpkin is everywhere 🙂

I am taking Kerri’s lead today and posting about a very important issue.  The Strip Safely campaign is well under way.  But there is something else that is needed from us to ensure that the tools we use to manage our diabetes is taken very seriously by the FDA.  They are planning future patient meetings on various diseases and conditions to better understand them.  Don’t you think they need to get a better view of the challenges of living with diabetes and how the tools available play a huge role in that?  Don’t you think since the number of people being diagnosed with diabetes keeps growing and growing, a solid understanding of this disease from the people who have it would help?  I do.  And I’m sure many of you would agree.  So let’s get together and make our voices heard.  Take a few minutes to sign this petition, please.  And pass it along.  We need 5,000 signatures so get to it!

Please sign here.

Three Years Old.

Advocacy, Community, Education, Emotions, Milestones

The big three

The Girl with the Portable Pancreas turns 3 on Sunday.  I cannot believe how time flies.  It wasn’t my start at blogging, as I had already been blogging for my friends at ACT1, but I started my own three years ago.  I am very happy to be able to reach out to people sharing my own experiences and knowledge and be part of such a powerful community.  I hope you continue to read and know that together we can do this.

I will leave you with wishes for a wonderful weekend and some motivation to keep you going strong 🙂

Optimism

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Strip Safely.

Advocacy, BG, BG Meters, Community, Education, Events

Two posts in one day.  Another first for me 😉

Strip Safely.  This is a fairly new collaboration within the diabetes online community to spread knowledge about the fact that the glucose test strips we use today, yes in 2013, are not completely accurate.  I have known this and it is an issue that bothers me greatly.  I think about all the people with diabetes who are not aware of an issue like this.  Those that are outside of the diabetes community.  Those that take their BG readings for granted.  And it can set someone up for major tragedy.  Since I know my BG meter is not 100% accurate, I always double and triple check if I get a questionable reading.  Too high or too low or totally off from my Dexcom, continuous glucose monitor.  Someone who is naive to meter accuracy, would go ahead and dose insulin based on a questionable reading.  That could lead to an immediate danger of an insulin overdose or not administering enough insulin which could lead to high blood sugar and the subsequent complications.

I don’t want to go back to the days of urine testing where you knew in what “range” your sugar was.  When I was diagnosed in 1981 that was the method used to test glucose levels.  You peed on a strip (similar to ketone test strips) and your urine turned it a certain color depending on how much glucose was in your urine.  Probably from hours ago.  That color represented a range of readings.  When I bolus from my insulin pump today, it doesn’t ask me what range my blood glucose is.  It asks for a specific reading that is used to calculate a precise amount of insulin needed to either correct a high or cover carbohydrates.  Carb counting and insulin dosing can be difficult enough at times without factoring in an inaccurate blood glucose reading.

Every single thing about diabetes management lies in the blood sugar.  How can one possibly manage blood sugar if they do not know with certainty what it is?  The answer?  One cannot.  And when people’s lives are at stake I can’t think of any better reason to campaign for better test strip accuracy and oversight over that market.

Take the time to write a letter to your elected officials. Urge them to attend the Diabetes Technology Society meeting taking place on September 9th.   Tonight on Twitter, there is a special time designated between 8 and 9pm, EST, to tweet about this issue to your elected officials.  They need to be aware of this important issue.  We need support to get this resolved.  Don’t forget to use the hashtag #stripsafely 

Device Revolution.

Animas, BG, Dexcom, Insulin pumps, OmniPod

The definition of revolution, according to Google, is a forcible overthrow of a government or social order for a new system.  I am starting to think that my diabetes devices are starting a revolution.  I am not sure what new system they would like.  Maybe a working natural endocrine system?  That would sure be nice!

I have been using the OmniPod system for 19 months; the new generation system for over 2 of that 19 months.  Within that time frame I’ve only had a few instances of bad pods or issues of that nature.  Until recently.  I obviously cannot prove that these new issues are due to the mechanics of the new pods.  However since I haven’t had issues before, that is what I am lead to believe.  A couple of weeks ago I had three pod issues in a row – two bleeders and one that was leaking insulin.  On various site locations.  I took a break from the pods for almost 2 weeks.  Today was day 3 of my first pod since that break.  And I got an occlusion during my breakfast bolus.  Unfortunately I did not have an extra pod with me nor any syringes  (that situation was remedied as soon as I got my hands on my supply) and I had to go home from work to get insulin.  Not the best situation to be in.  When I removed the pod, there were no visible signs of cause for an occlusion.  Taking another break.

Also, I have been using a Dexcom CGMS for almost 5 years; the G4 system for 9 months of those 5 years.  For most of that time I have used my outer thighs primarily for sensor sites since I cannot use them for infusion sites (due to lack of absorption).  No major problems other than the occasional failed or wacky sensor, one bad transmitter and one broken receiver.  In all that time.  Then all of a sudden in the past few weeks I have had numerous bleeding sites.  Some that have not affected the performance, some that have.  I am sensor-less at the moment, giving my skin time to breathe.  But I am going to attempt another one this evening.  I am honestly lost without my CGM.

Using diabetes devices should not be stressful.  I normally do not feel burnt out easily when it comes to my diabetes.  But these recent problems have me totally burnt out.  I can’t help but feel that all of a sudden, I am doing things wrong.  I’m hoping this revolution will be put to an end soon when they realize a working pancreas is not going to happen 😉

Grief Then. Grief Now.

Emotions, Family

I woke up in the middle of the night last night from a nightmare.  My heart was pounding so hard I swore Joe could hear or feel it.  It was about finding out my father passed away.  When I woke up I realized it wasn’t really a dream, but a recollection.

Today marks ten years that my father passed away.  Ten years.  As much as I hate it, my life has gone on.  So much has happened in the past ten years, especially in my diabetes life, that I wish I could share with him.  I know he is watching over me but I wish he was here in real life.  I still have those moments where my heart truly aches from missing him.

I would give anything to be able to talk to him again.  Hug him.  Hold his hand.  Make tea for him.  And as long as I live, I will hate diabetes for taking that away from me.  But today I won’t let diabetes win.  I’m not going to reflect on what I lost.  I am going to celebrate the wonderful father I had.  I am going to remember the good times we shared.  I am going to cherish his memory.

In my dreams
I’ll always see you soar
Above the sky
In my heart
There will always be a place
For you for all my life
I’ll keep a part
Of you with me
And everywhere I am
There you’ll be
And everywhere I am
There you’ll be
Lyrics from There You’ll Be by Faith Hill, the song we danced to at my wedding

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T.G.I.F.

Emotions

Since I whined like a little baby yesterday, I just wanted to reflect on the fact that indeed things could be much worse.  I am still a very blessed person and just have a bit on my plate at the moment.  I’ve seen a quote a few times recently “It’s a bad day, not a bad life”.  In my case it’s been a bad week but it still holds true and I know that 🙂

 

I’m looking forward to the weekend and hope that you all have a great one!

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Frustrations Galore.

BG, Edgepark, Emotions, Endocrinologists, Insulin pumps

This has been one rough week and I cannot wait until it is behind me.

  • My boss is on vacation so I’ve been filling in for him.  That has lead to some hectic times in the office.  It’s great being in charge sometimes but I am looking forward to having that extra load lifted come Monday!  Also at work, being part of a huge organization can create complicated processes and frustration that are truly unnecessary.
  • I was expecting a shipment at home from Modell’s (new sneaks baby) this week.  It was initially shipped via FedEx SmartPost which means that FedEx brings it to the US Post Office who then delivers it.  In tracking this shipment, I saw that it went from my city, to the next one over, then to New Jersey, a whole other state.  I cannot begin to tell you the frustration I had in trying to get to the bottom of where it was going to wind up.  Sitting silent on your end of the phone because you cannot get passed the automated voice prompt in order to speak to a real person.  USPS needs to improve their telephone customer service system!
  • Insurance.  I admit I’ve never really had to deal with insurance woes.  My coverage is above average and never resulted in denied claims or anything of that nature.  This year, my employer switched to Anthem BCBS and I hate them.  Every shipment of pods that I get from Edgepark is initially denied, they request medical records (of what kind, I have no idea) and take 2 months or more to finally approve.  My last order from 5/22/13 is still not approved.  This is the third time they’ve done this and Edgepark will rightfully be hesitant to send my next shipment which is scheduled for 8/3.  I’ve attempted to work something out with them so that this does not happen every time to no avail.  This has become so frustrating and now also worrisome that I will not receive my pods in a timely manner.
  • My employer offers a health advocate service and I figured my insurance approval for pods issue was the perfect opportunity to engage such a service.  This is what I was told by them today “Unfortunately, the distributor has the right to hold any shipment if payment is not received.  Your only option would be to pay the charges and submit the bill to the insurance carrier for reimbursement as the request for medical records are to determine medical necessity.”  Hello more frustration.
  • Insurance.  I admit I’ve never dealt with insurance woes.  My (previous) pump was an Animas Ping that came out of warranty last month.  I received a new one with word from Animas that no preauthorization was required and that it was covered 100% under my durable medical equipment coverage.  Anthem has approved this claim with the amount of the pump not covered.  Animas claims they are working on it and assured me I would not have to pay for the pump.  I informed them more than once I am NOT paying $6,000 for the pump.  So incredibly frustrating.
  • My endo appointment was last week and not only did my A1c go up a bit, so did my cholesterol.  This is the first time ever that it’s been slightly elevated so I’m not terribly concerned.  However I am trying to think of what could have possibly caused it and am extremely frustrated that I can’t seem to narrow it down to anything in particular.  If anything, I’ve been exercising more and eating a bit better!
  • In the 18 months I’ve been using the OmniPod system, I have had very few issues with pod failures and other problems.  Last week when it was about 100 degrees in NY, I changed a pod to my lower back only to sweat it off in 5-10 minutes flat.  Since I was afraid of sweating more pods off, I was mainly using my abdomen for pod sites, although still rotating areas as much as I could.  One pod turned into a bleeder and when I took it off looked possibly infected.  Luckily I tended it to right away and it was not actually infected.  The pod after that started leaking insulin and left a huge welt on my belly.  Thinking I should give my abdomen a break and with slightly cooler weather, I turned to my top butt for the next pod.  Which also turned into a bleeder.  Three pods in a row that had to come off early and resulted in high BG.  Insulet is replacing 2 of the 3 pods however that does not replace the frustration it has been to deal with this issue.  I am extremely thankful that I have an alternate pump to use instead for the time being.

Can I scream now??!  I hope you are having a much less frustrating week!