Sunday, March 28, 2010

Parting Is Such Sweet...

My eyes opened. Groggy, barely able to take in the morning sunlight streaming in through the bedroom window. Kicked the covers off my body, lifting myself up and swinging my feet toward the side of the bed to stand up and welcome the new day. The dog appeared, wagging her tale and putting her front paws on the bedside to greet me with a wet nose and good morning kiss.

As I stood, my hands habitually went to my waistline to feel for my Minimed Paradigm 722 at its usual spot. Nothing. Eyes only slightly ajar, my hands surveyed the bed and felt underneath the pillow in search of the stray pump. All while I gained my footing, and prepared to take the first step away from the bed. Still nothing, and the thought of my pump tubing becoming taught and pulling loose my sight entered my mind.

Panic. Eyes opened fully, and I scanned my surroundings in search of my missing lifeline. That’s when it hit me: There’s no connection. For the first time in 9 years, I am not attached to any insulin pump. Unconnected. Unhinged. Free.

This was the start of my Pump Hiatus, which began about midnight Friday/Saturday. The first two mornings seemed surreal as I grappled with the reality that my Bionic Limb wasn’t attached, but set aside for that nostalgic routine of injections. Hello, MDI. Hello, again.

Parting is such sweet sorrow... but sometimes it’s necessary. Just as Juliet said it to dearest Romeo, so I say it to an insulin pumping lifestyle that I've enjoyed since the summer of 2001, my final year of college. We are sad to part ways temporarily, but it's sweet as I will be healed when the two of us finally reunite.

Don't get me wrong. I love what pumping has done for me through the years. The daily flexibility and ability to achieve tighter control is amazing and irreplaceable. Not to even mention the CGM choices we now have, which allow us to have a more constant tracking of where we're at in D-Management. It got me down to a 6.1 A1c at one point, and that's proof that it can be done.

But all of that means constantly being connected to a device. Suzi calls me the Bionic Man, and the pump is a Bionic Limb. It's always there, minus the short and periodic disconnections for showers and other personal moments. When sleeping, you must sometimes adjust to where it's placed on the body. It can be knocked off your body if you aren't careful. Sometimes, the sites just don't work or the infusion sets malfunction. Kinks. Blockage. Sets coming loose or getting knocked off. It can be frustrating, aside from just having to find a new spot of Real Estate for the site to go in the first place. There can be gushers, and it seems in my case they always spring up when I'm wearing a white dress shirt.

It’s become a routine struggle, an emotional trigger point that leads to my breaking down out of sheer frustration that my body just doesn't support my pump usage.

For those reasons, I've reflected more fondly on the days before "bolus" and "basal" become a part of the daily vocabulary. When you took a shot in the morning and went about your day. Sure, the control and flexibility wasn't there, but you didn't have to lug the pump and set with you all the time. There were no bionic limbs. In a way, I’ve missed that "freedom." Those were the days since March 1984 and that final year of college.

Nine years later, I've realized that my warn-torn body needs a break and this is the best time for it. My body needs time to heal from the pump infusion sites that, against the FDA guidelines, sometimes have stayed in place for more than the recommended 2-3 days. Most recently, a left leg site didn't work and after a few days evolved into a blusher that may have been slightly infected. As I'm simply out of Real Estate, and struggle so much with the frustrations of even changing a site, Dr. P and I decided that a break would be the best move.

Will try a month then see if another would work out.

Needles and pen needles are free, thanks to insurance. So this also helps on the financial front by being able to put off ordering new pump supplies for a bit. That’s an added bonus. Initial two Lantus Pens come from Endo’s office as samples, which is also bonus that avoids having to pay for them at the start. Three should get me through a month, so at least I can wait a couple weeks. Picked up my initial Lantus Pens on Friday afternoon, with direction to stop pumping at midnight and taking my first long-acting injection. I’m on a 28u bedtime basal, which is slightly less than the total 30 pump basal Humalog units. Got a prescription filled for the smaller 50-unit needles for the small bolus amounts I’d be taking for food or corrections, and tried to keep those to a minimum. BGs ran a little higher for the weekend, in getting used to the new style.

It was interesting having to hand-calculate all the carbs and corrections, rather than having the pump automatically do the math. Grrr. The first night of chinese food was interesting, but BGs came out quite nicely. Injections arne't as precise with shots as it is with pumping, I came to remember once again. But the freedoms…. Oh they’re great.

Showering without any connection. Being able to sleep on any side, in any position. Wrestling and playing with the dog without having to worry about tube tangling or sets being knocked off. I’m sure the workweek will bring similar joys, like not having a device attached to my belt or having to worry about tube tugs whenever the shirt is tucked or untucked. Of course, there's challenges: relearning the differences and how my body reacts to different foods with injections, not an hourly basal. Carrying needles with me and making sure the Humalog is full. Having to take more shots when more food is added. Of course, remembering I'm not connected or restrained by tubing.

Good times. So, the Journey begins...

14 comments:

Rachel said...

Interested to see how this goes, especially as G is starting to consider a pump for the first time after being set in his ways with MDI's.

olivejooice said...

Wow, I hope this works for you! I've been on the pump 3 and a half years and only used the pens for 6 months after dx.

It must be nice to take a short break and not have to worry about that damn tubing! ESPECIALLY when playing with the dog! :) My dog Oliver is a jumper, and sometimes his paw will get caught in the tubing and then yank it down. When I yell he gets all scared and I feel bad.

I hope this works out, and your sites heal. I never gave much thought to how my sites will hold up over the years, but your hiatus has got me thinking about it and so I'm trying new sites to add.

GOOD LUCK!!!!

Michael Hoskins said...

If there's one thing I'd say as advice to a new(er) pumper, it's this: Respect those 2-3 or even 4-day time frams that the FDA recommends. It's for a reason. Maybe you can't prevent site damage even then, but it may be more possible to heal adequately and not lose Real Estate availability. Just a thought.

Joanne said...

It is so interesting to hear you equate MDI with freedom. We're still on MDI with Elise, and a lot of the other parents talk about the freedoms that come with pumping. We haven't gone down that road because we have rather good control right now (if it ain't broke, don't fix it), and I'm just not ready for her to be hooked up to something 24/7.

Nice to hear another view.

Michael Hoskins said...

Joanne: Thanks for reading and commenting. Yes, it is somewhat "freeing" to not be connected to a device and tubing after nine years. But don't get me wrong, I'd consider the "freedoms" of pumping to be much more important than this one I now describe. The control is unparralleled, and the ability to have flexibility in eating and how you live is not something I would replace. Historically, I've always done so much better on pumping than with injections - before now, mostly was on shots twice a day for 17 years. The pump freedom is what makes this such a tough decision - I feel as though I'm sacrificing a greater freedom and D-tool. But, it's only temporary. And a needed rest.

Joanne said...

Michael: I hope you enjoy your rest and it gives your body the much needed time off and healing!

Anonymous said...

You might consider the tubeless pumps later - omnipod - which will be getting a smaller pod later in the year - now has a $299 upgrade option till the end of April. Also I have heard that the solo pump on solo4you.com will be starting in April or May to sell to patients.

Good Luck!

Michael Hoskins said...

Thanks for reading and offering that suggestion about the Omnipod and tubeless varieties. I've read several blogs that people find the tubeless kind to be perfect for them. But for me, tubing isn't my issue. It's the pump infusion sites themselves, and a tubeless would present similiar issues. I'm also not a fan of omnipod's current version because you can't refill it, and if you must take it off within those three days, then you lose whatever insulin is inside. Among other reasons. Minimed has never presented me with problems, and of the two I've used and the several I've done trials on, this one is the most perfect fit. Just need a break to heal up some.

Shannon said...

I was with Anon - when your hiatus ends, you should consider getting an Omnipod. Your last paragraph spoke volumes about your dislike of tubing!

Also, the reasons you listed NOT to get an Omnipod haven't affected me at all. I've been using it for over six months, and in that time, I've only had one occlusion, and it was on day three, anyway. I've never had a need to take a pod off before the three-day expiration, so wasted insulin has never been an issue. Just sayin . . .

I was very anti-Omnipod, too, until I got the demo pod and gave it a shot. Now, I can't imagine going back to a tubed pump.

As for the real estate issue, I find that I am more creative with pod sites than I ever was with a tubed infusion set. I use my arms, my butt, my legs, and even my back. I have a rotation system, which operates in a clockwise fashion, so I don't reuse (or even get close to) the same site for over a month.

No, I'm not getting any money from Omnipod ;-) I just love the freedom it has given me.

Michael Hoskins said...

Thanks for all that! The Demo Omnipod didn't sway me. For me, it's not a tubing issue - even the points made about freedoms of being unconnected are more device-oriented, not tubing focused. Showering, there'd still be a somewhat bulky device (like infusion set) hooked onto me. Sleeping, I wouldn't sleep on whatever side it's attached to. Dog would likely still jump and knock off the Omnipod. Etc. The refilling, while not something recommended, is a task that I do often at least once per reservoir depending on where I'm at. It would be limiting, but obviously a doable task if I wasn't lazy about it, to have to adjust my site/pod changes and not be able to get more than 72 hrs out of one. But that's just me and how I view pumping, based on how I've done it for my nine years so far. Again, not the best move to be copied but one that I feel comfortable with for the most part.

Shannon said...

I hear you, and I totally understand what you mean.

One thing to remember - using a site for longer than three days might be part of your problem, though. I know you know this, but the longer you leave it in, the more likely you are to have scar tissue.

OK, I'm done now ;-)

Michael Hoskins said...

Shannon: I am what some refer to as the epitome of self-defeating behavior. Likely, the reason for my needed Pump Hiatus is for that very reason that I don't follow the recommended infusion site timeframes and leave them in too long. We remain hopeful that someday I'll learn my lesson. Someday. Thanks again for all the feedback!

FatCatAnna aka Anna Kiff from Canada said...

Being on MDI for 40 years - and having pretty good control - I think you'll do just fine. Going onto a pump for myself was just an experiment, and I've been on it for 2 years now, but sometimes I wonder when my real estate will become war torn. I try my best to change infusion set every 3 days ;) I have to admit, not having something attached to me is more what my freedom from a pump would be. Now that I'm more in tune with I:C (insulin to carb ration) and basically had to relearn diabetes all over again with pumping - I think I and you will do just as well on MDI. I met a 75 year old diabetic back in Oct - diagnosed at 25 - and his A1C is ... drum roll ... 5.1% - and he's in great shape.
It just depends on the individual and how they manage their diabetes. Can't wait for your next blog - and BTW - is that muffin really made out of just bacon??? I'm Canadian, so my humour monitor might not be the same as Americans (was wondering about the "icing" on top of the muffin).
Take care - and see you around the Blogging Pool of D life!

"D" as in "D" said...

My comment must have disappeared into the blogosphere...but I wanted to say that now that you are using the pens, don't forget to count to ten when you inject from a pen before removing the needle (dang, more math? okay...just some pesky counting) because insulin flows slower from a pen needle than even a syringe needle. I was just reminded of this when my bg's were very high and I was wasting insulin by not waiting a few seconds before extracting said pen needle. Good thing I had a very observant nurse on my team.