Don’t Give Up

So the weirdest thing happened late last week: the worst and most stubborn blood glucose SUS (Sudden Unexplained Surge) I’ve ever had, and for two whole days, I was just hopping mad. Felt like my head would explode.

Essentially, I just woke up one fine morning at a praiseworthy 96, but then shot up to 270 after breakfast. Despite numerous corrections and even raising my basal rate by 25%, I hovered between 200 and 280 for 48 hours — at which point the cranky factor was off the charts, so I started calling and emailing my endo like crazy. Poor woman. She suggested I pull out my current pod, to check if it was delivering insulin. Which means wasting it, of course, since they can’t be re-inserted. Well, the pod worked fine. It was just me, apparently. I put on a new pod, programmed a rage bolus and went to bed. Woke up the next morning at 135, and have been pretty much back in range ever since. I wasn’t getting sick, and it wasn’t “that time of the month” or anything unusual. I’m still baffled…

Why, Oh Why, does this disease throw me a curve ball every time I think I’ve got a good routine going? I guess they don’t call it “The Thinking Person’s Disease” for nothing…

Then after a frustrating 48 hours of SUS — and once again that feeling that this @#$!! disease is strangling me — Peter Gabriel on my iPod really came to the rescue:

Don’t give up
’cause you have friends

You’re not the only one

No reason to be ashamed

You still have us

Don’t give up now

Were proud of who you are

Don’t give up

You know it’s never been easy

’cause I believe there’s the a place…
There’s a place where we belong

Rest your head

You worry too much

It’s going to be alright

When times get rough

You can fall back on us

Don’t give up

Please don’t give up


21 Responses

  1. David Parker
    David Parker July 18, 2007 at 1:57 pm | | Reply

    Been there. Done that. Life with big D sure isn’t a tight contract.

  2. Manny Hernandez
    Manny Hernandez July 18, 2007 at 2:01 pm | | Reply

    Peter Gabriel, girl… that has got to be one of the greatest songs ever.

    Know what? I had one of those nasty BG days two days ago… I hear you.

    P.S. I loved that you thought of TuD as “the place”! :D

  3. Sara
    Sara July 18, 2007 at 2:02 pm | | Reply

    Indeed the blood sugar contol thing can be so frustrating and perplexing. Hope your crankiness is passing. Sometimes I believe insulin can be a bit unstable. It is my understanding that there is a range of acceptable efficiency rates for insulin required by the Feds – and it’s not close to 100%. This will explain why with some bottles of insulin you may need less and with some you need more to keep in control. So that adds another factor into the mix of what goes wrong with control. And I used to think it was always my fault when things went south for me. Yes, you constantly have to think, and be flexible, and hope for the best too.

    Take care.

  4. Simon
    Simon July 18, 2007 at 2:48 pm | | Reply

    All part of that fun game “diabolic diabetes” isn’t it? Just when you think you’re up with the play diabetes rolls a double-six and gets another turn. Bummer ain’t it.

  5. Sally Jay
    Sally Jay July 18, 2007 at 3:00 pm | | Reply

    Oh how this post comforted me – thank you! I am in the middle of an SUS right now. Perhaps I should turn to my own iPod.

  6. pumpmavin
    pumpmavin July 18, 2007 at 3:10 pm | | Reply

    The pod is very cool. The automated insertion of the cannula and the lack of tubing are important advances. That said, it is still an insulin pump and prone to the same issues that arise from pushing insulin into the subQ with a catheter.

    Some other reasons your BGs were elevated and resistant to lowering via additional pod programming could include:

    1 An air bubble in the pod reservoir leading a period of non-delivery.

    2 An occlusion in the catheter that was cleared when you removed your pod to check it.

    3 Leakage of insulin out of your body. Leaks can occur where insulin travels back along the outside of the cannula and winds up on your skin vs. in your body.(in the past, this has been described as ‘tunneling’).

    4 Less potent insulin being used as described by the previous poster

    5 Leakage internal to the POD (past the reservoir o-rings or in the plumbing)

    6 Pod malfunction (many possibilities on this, though MRI exposure seems unlikely)

    All of the above are common to all forms of insulin pump including the pod. I believe the high BG action plan that is given to traditional pump users still applies for the pod: treat high bg by injection, change the infusion site, monitor BGs.

    In any event, you may want to consider reporting this to insulet. It will help them and possibly other pod users if they know about possible issues.

    The limited trouble shooting options on the pod due to lack of a pump-to-site disconnect and hidden reservoir make sorting out high BGs a little but harder and more $$$ vs traditional pumps.

    Being able to disconnect without removing the site or trashing the system and being able to observe the reservoir during use are two things that one gives up when picking a pod over a traditional pump.

  7. RichW
    RichW July 18, 2007 at 4:17 pm | | Reply

    I always treat those unexplained highs with an injection. Of course, that assumes I have enough time to track the results before I go to bed. It can be a real pain because I don’t want to eat again until I know whether the shot has brought me back to normal and if I’m headed for a crash. I’ve had it all catch up with me later in the day. Your SUS was more troublesome than any I’ve had. I’ve just started reading the posts from several sites and I never realized how variable we can be. One size certanly doesn’t fit all.

  8. Rosalind Joffe
    Rosalind Joffe July 18, 2007 at 5:38 pm | | Reply

    Oh, and those of us, with diseases that meds can’t control, actually envy (can you believe it?) you Diabetics. But there ain’t nothing out there to envy, is there? It’s all just a lot of work – and it’s all about finding a safe haven. I find relief in Beethoven Sonatas, Willie Nelson and the Dixie Chicks.

  9. Denise
    Denise July 18, 2007 at 5:38 pm | | Reply

    Thanks I needed that.

  10. Lauren
    Lauren July 18, 2007 at 7:54 pm | | Reply

    As a type 1 diagnosed for 4 months I vascillate between cursing my luck (my genes are real lemons) and feeling incredibly grateful that I am able to be both a person with a chronic illness and an extremely healthy person. Diabetes doesn’t limit mobility, and it isn’t a painful disease (injections and finger lancings notwithstanding). I count my blessings that I am able to lead a healthy, active lifestyle. However, I still become enraged when people casually say things like it should be no problem to maintain an average blood sugar of 105 because “well, you have insulin, don’t you?” failing to understand the exhaustive daily maintenance that type 1 requires. As a new diabetic, every time I increase my insulin dose slightly, I want to cry — imagining another little neighborhood of beta cells that has gone lights-out forever. Diabetes is a mixed bag for me as I’m sure it is for everyone. At times I’m grateful for the perspective it’s brought into my life, and other times I look for the nearest brick wall to beat my head against (figuratively of course).

  11. Vicki
    Vicki July 18, 2007 at 8:20 pm | | Reply

    Amy: After 10 years as type 1 LADA,like you, there’s one thing about diabetes I know for sure: Just when you think you’ve figured it out, SOMETHING CHANGES.
    Well, there’s a good side to it. It keeps us humble. smile.

  12. Christine Curry
    Christine Curry July 18, 2007 at 8:52 pm | | Reply

    You are right. This is a complicated disease.

  13. Chrissie in Belgium
    Chrissie in Belgium July 18, 2007 at 11:32 pm | | Reply

    Peter Gabriel is a GEM. Hold on to people like that because they are few! I have had D for 45 years. I STILL get totally very annoyed when diabetes throws me a curved ball. You assume you yourself have done SOMETHING wrong. You go through all the possibilities, checking them off one by one, and come up with no explanation. That is what makes diabetes so HARD!

  14. Tesney
    Tesney July 19, 2007 at 8:12 am | | Reply

    So that time of the month can cause BG spikes?! I just posted that question on the TuDiabetes forum less than an hour ago. Glad to know it’s not just me!

  15. Rafael Belanger
    Rafael Belanger July 19, 2007 at 1:49 pm | | Reply

    You said it so perfectly, “Oh Why, does this disease throw me a curve ball every time I think I’ve got a good routine going?”.

    It takes a while to sink in but eventually you learn to adapt to it. Theres too many variable to control to have a normal life flow.

    We do what we can with what we have and its never enough.

  16. Vicki
    Vicki July 19, 2007 at 7:32 pm | | Reply

    Most of the time I don’t consider managing diabetes HARD, I do consider it a CHALLENGE. When I get it right, “I” win. When I don’t, my “body” wins. Yes, you heard me right. With diabetes, my body has a “mind” of its own, smile. And I love challenges. If “I” win enough times I’ll reach the end of my life on earth with all my parts working properly. Well, I’m 70 now and so far, so good!

  17. Karen
    Karen July 19, 2007 at 7:50 pm | | Reply

    Okay now I feel dumb and I have been diabetic for 40 years. I never even thought that one vial of insulin would or could be more potent than another, that so explains a lot of things to me, but does not help the frustration factor of this pain in the a$$ disease.

  18. M
    M July 22, 2007 at 1:50 pm | | Reply

    Ah Amy, to quote another song: You took the words right outta my mouth!

    I’m currently having an SUS of my own; ups & downs all over the show – but mostly ups. Lots of corrections, lots of funny confused looks, a few swear words, and frustration all round. This has gone on for a few days now with no obvious reason behind it. I hate when D gets its time in the limelight, especially after so long of me thinking I had it all sorted and could do anything I wanted. Perhaps it just needs to remind us that it’s boss some days… well it can try, but dammit, I’M BOSS of this body and D can go *&%# itself!

    LOVE that song (I’m a PG fan) – a great choice :) And now I’ll have it in my head all day, which is not a bad thing while I need a little encouragement!

  19. Dan Fahey
    Dan Fahey July 23, 2007 at 2:49 pm | | Reply

    There are times when my insulin intake requirements just seem to change overnight, and that can become the new baseline. Once that is covered everything is fine, just operaring with more or less insulin than before.
    Other times, it is more like waht’s described in your post: an unexplained surge that you just deal with until it’s over.
    Of course, initially, you can’t tell which is the case.
    In my view, as long as you’re testing on a consistent basis, and making adjustments as quickly as possible, these are to be viewed as “bumps on the road” and not something that’s a failure, just the real world of a diabetic.
    Also, don’t forget that stress is a majot contributor to high blood sugars, so step back and consider whether you’ve been under undue pressure. If yes, can you modify yuor behavior to lower the stress level? If no, you may need to bump up your insulin until the stresses subside

  20. Cheryl Allin
    Cheryl Allin July 23, 2007 at 5:52 pm | | Reply

    Aw, hang in there – as a wife of a T1 – I know how totally frustrating it is. My hubby (I swear) has BG biorhythms where he’s high for a week, then unexplained lows for a week. He was down for the count a few years ago with unexplained nausea – mostly in winter, so I suggested he go tanning and it remarkably helps! Sometimes, my husband will feel icky or have trouble when he gets to the “bottom of the bottle” on his insulin. Other times when it’s stubbornly high for no reason, we have to guess that it’s stress or some subtle bug he’s fighting. SUCKS!! LOL

    Being self-employed and barely making it – we don’t have the luxury of higher quality medical care. Our last endo once said, “I only do blood sugars…” He didn’t care what other weird symptoms my hubby was trying to deal with as a new T1 – he’s now 40 and got this at 33 – they couldn’t even agree on what type he had.

    Hang in there! You *DO* have friends.

  21. June S.
    June S. July 28, 2007 at 7:21 pm | | Reply

    RE: SUS’s … I am a happy OmniPod wearer, but I had an SUS this evening that must have begun when I changed the Pod. I had been running almost perfect BG’s all day, and at 5:40 p.m. my BG was 83 and I bolused for dinner. One hour after dinner I felt strange, so I checked my BG and it was 266. I bolused, and waited another hour, but was up to 299! I phoned Insulet, and the rep. I spoke with recommended I remove the Pod and aspirate the insulin from it to fill a new Pod. That’s what I did, and I’m on the mend. He’s going to send me a replacement Pod. This disease IS frustrating. I’ve had it for 35 years, so I know what I’m talking about!

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