Best Friends

Quick Update: post – surgery is going pretty well. Still adjusting to my new way of the world, but all – in – all I’m good. Working on a computer is hard…but whatever for now.

I’ll do a well thought out post one of these days but right now it takes me forever (I’m channeling “The Sandlot” when I say “fooorrrrrreeeeeevvvvver.”).

The one thing I want to say is thank goodness for animals. Pets. Furry members of the family. Through the past two surgeries and stressful time off, they seem to take a lot of the bad juju away. Whether it’s petting them, going for a walk, or having them wag their tail in your general direction, you realize all they do for you. They make it better. 

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The One Thing I Cannot Do Right Now…

…is something that I never imagined would be so hard.  More on that later.

     Since last posting, I’ve been up to a lot.  As I’ve previously posted, I have now had two major surgeries where my eyes are concerned.  Multiple last surgeries ending with two vitrectomies in the right eye.  This past Monday, I was lucky and most fortunate enough to experience an emergency vitrectomy in my LEFT eye.  Oh, joy.

     My retinopathy is extremely aggressive and Dr. B felt that my only option was surgery.  Keep in mind that I cannot fully see out of my right eye at this point because of the silicone oil that has for the moment permanently taken up residence behind my right retina.  I knew this is where everything was headed.  But I never, ever, EVER imagined just how quickly my retinopathy would move. 

     I was back at work in a functioning capacity for a week and a half until I came in, sat down at a computer and completely lost it.  I could not see anything.  Now, let me clarify.  I am not and was not completely blind.  My right eye is 100% blurry (think looking out the skewed bottom of a glass bottle).  I can see big picture, but it is useless to read, look at a computer or even watch TV.  Glasses can’t help my right eye.  My left was a mess of floaters and a total curtain of blood behind my eye with…drum roll…a retinal detachment.  With a detachment, and most specifically my detachment, it was dark.

     Fast forward to last Friday.  I was signed up for surgery Monday morning (I bumped three of her other cases if that gives any bearing on how completely RUDE my eyes are…).  Fortunately, one of the optometrists was able to fit me for a contact lens for my right eye to give it some “workability.” 

     I made it through surgery OK and I am getting used to my momentary disability…It’s very frustrating to only be able to see minimally.  With my lens, I can watch a little TV and my parents were awesome enough to buy me a new phone that I can see enough to get by (an iPhone is WAAAAY too small now).  It’s not as bleak as I had envisioned prior to surgery.  I’m not useless.  I’m getting by and I am in a much better mood than I forsaw myself having. 

     I haven’t let myself dwell on the stuff I cannot do.  I know my vision now is temporary-ish.  I will see better in the future – whether that be through stronger contacts in both eyes, special glasses and/or more surgery.  Things will get better – are better already.

     BUT.  The one thing that pisses me off the most, is the one thing I cannot quite do.  And that is put toothpaste on my damn toothbrush.  WTF.

 

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(I either put too much, too little, it’s hanging off the side, I miss completely or once already, I failed to squeeze any onto the bruch at all)

Cool Experience

Because I work in a hospital, I hear a lot of different stuff – both directly and overhearing people talking.  I usually do not interject my two-cents into any patients’ personal conversations.  I was milling around the clinic’s front desk the other day when a patient came to check in – he is around 10 or 11.  I overheard his mother say the word “insulin” to him.  Huh.  That got me listening with half an ear. “Pump.”  Oh, what the hay. 

     “Did you say insulin?” I ask.

     Mom stops and answers, “Yes! My son has a friend who is a diabetic and he just got an insulin pump…{Kid’s name] thinks it’s neat.”

     “Oh! Well then…” I pull my purple_pancreas out of my pocket and show the kid. “I’m a diabetic and have a pump, too!”

This prompted the patient to sit down next to me and engage in a rather lengthy conversation about what an insulin pump is and what it does.  For some added diabetes fun, my CGM started beep-beep-booping to tell me that I was going lowish which then prompted a CGM discussion.

 

It was just such a cool moment.  Someone who is not a diabetic who wanted to genuinely know what this technology was.  And it was even cooler that he has a diabetic friend and he wants to be able to understand what his friend has to deal with in a more in-depth way.  I just felt lucky to have been a part of this.  

Starbucks: More evil than necessary today

 

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Always check to make sure your order – anywhere – is correct.  As a diabetic, we (well, we should) be taking insulin according to what we’re eating and how many carbs are in that certain food or drink.  Our blood glucose kind of depends on it.  

 

Today, before my provider meeting in clinic, I ran to Starbucks. I. Love. Starbucks.  Coffee in general, really.  I always order a Grande Skinny Vanilla Latte which has 17g of carbs and I bolus accordingly.  I have never had a problem.  So, I take my insulin…and after the meeting, I check my blood glucose.  463.  Wait.  What?!?!?! 463? Seriously, diabetes? SERIOUSLY?  I haven’t come down much since.  And I feel like absolute junk.  Upon further review, my only idea is that they did not give me a skinny vanilla latte and it was the full alarm, bells and whistles, non-sugar-free, full fat version.  With my luck, it had extra sugar sprinkled on top.  Damn.  I even thought half way through, this tastes even more delicious than usual, but I was up so early this  morning that any caffeine would have tasted like manna from the gods.  Again: damn.  Starbucks: you mean.

Ah-Ha!

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The other day, I came across a post on Facebook from one of the diabetes-focused pages I follow and they posted the question: “When did you first realize that you had diabetes forever?”  I read some responses from other diabetics and/or PWD’s parents.  That got me thinking: when did I realize this was a permanent thing?

 

I’ve had diabetes for so long now that I am not quite sure when it hit me.  I have an answer if I have to answer, but it was gradual.  It started a little while before when it actually hit me and my parent’s attention.  I always counted myself as lucky that I was diagnosed at an early age so that I never really knew life without it.  I never had that “oh, crap! Now what?!?” moment where I had to reroute my entire way of thinking.  I knew this was supposed to be bad and it came with some pretty craptastic stuff such as injections and the like.  But, all the like?  I just did it.  I never really questioned it so much as it was just something I did.  I learned more and more about diabetes, but never had that angry, FML moment.  I accepted it.  I don’t even remember being depressed or sad.  It didn’t slow me down. 

 

And then there was the end of high school and beginning of college.  Aaaahh – there it is.  That brick wall that everyone at one (or more) point(s) or another sees.  I can’t escape this chronic illness?  The eff you say!  Stop checking my blood sugar?  Sure.  Don’t count carbs and eat what I want?  Absolutely.  Run amok for years?  Oh, bring it on.  An HbA1c result in the double digits?  I’m down. 

 

So, my response to this Facebook query, gun to my head, would be my late teens.  The realization reared its ugly head and finally pulled me under.  Multiple years later, I’m still digging out of that mind set and dealing with the repercussions. 

 

Oh, Hindsight: you are a real jerkface JERKFACE

 

When was your ah-ha moment?

CGWhyIOutta….M.

   I’ve been stewing about this for a few weeks now.  Stewing over the fact that my CGM has this fickle, grating, uncooperative mind of its very own.  I am, to say the least, a little frustrated, angry, and generally a little disheartened by its performance thus far. 

    If you haven’t scrolled down to my earlier posts, I sport the new Medtronic 530G with Enlite – in purple, of course.  I am extremely happy with the pump.  Amazingly so for my needs and wants – I have noticed a drop in my blood sugars, I don’t have to worry about a zillion shots all day long (how annoying is it when you just want to bolus for something teeny-tiny such as 2g of carbohydrate in creamer to go along with the elixir of life and you have to whip out and waste a needle for one paltry unit of insulin?), and I don’t have to look like that drug addict one table over in a restaurant.

    But…well…damn.  I know that sensor readings aren’t going to match up with actual blood glucose readings from a finger stick – I understand that, I just thought it’d be at least in the ballpark!  (I have been assured that they should be)  My readings have been absolute WHACK.  For example, the pump will want to shut off (the Medtronic 530G is programmed to suspend if a person’s BG goes waaaaay too low, but you guys already knew that…), telling me I am 50mg/dl with double down arrows when in reality, I am 110mg/dl.  Or vice versa: I am 190mg/dl, yet the CGM is reading 349mg/dl and rising.  Did I mention this is all while I should be stable?  I mean, what the world?  Further more, there have been two calibration errors – well, yeah, that is what happens when your sensor reads 86mg/dl and you’re really 176mg/dl.  Also, it’s upsetting knowing that something so small as (unknowingly) rolling over the sensor and laying on it overnight can throw the numbers way out of sync.  I’ve gotten to the point of frustration where I’ve turned the sensor off and went CGM-free for days on end.  I’ve had about one stretch where all seemed copasetic. 

    I called Medtronic’s HelpLine today for some answers and well, I’m not 100% sure I got any real answers I can use…at least right away.  I’m going to reconnect tomorrow morning and see how everything goes…Through looking over my data and troubleshooting if I have a faulty transmitter (which I apparently do not), the only explanation I was given (besides hearing again about how numbers rarely are matchy-matchy, we’re supposed to be looking at trends here…) was that either the lot on the sensors are bad (which, again, was told probably not)…then it’s my body and sensor placement.  I’m not putting them on wrong – I made sure of that.  I do not for one second believe that these sensors hate every part of my body…they’ve been all over my abdomen and shh! I’ve tried the back of my arm (I’ve already been told that is not an approved site, don’t worry) but alas, to no real avail. 

    So, I am currently at a frustrated impasse.  They are sending me a replacement sensor to see if that makes a difference – I’ll cross my fingers.  I am very grateful that I have this type of technology at my disposal, and do think that this information is very valuable and that I want it – but I just wish it would be working better.  I don’t expect to get this technology and POOF! have it work perfectly the first time and every time; there is trial and error and kinks…but is it too much to ask for everything to at least be on the same playing field?  I’d be fine if I was on second base and my CGM were up to bat…but I feel like my CGM is off in the stands eating a hot dog with chili, onions and mustard.

Emotional Ringer…Two Rounds Down…

   Round 1 went to diabetes the past two weeks.  I’ve been having some trouble with my left eye (the eye sans vitrectomies, oil bubble, blurry vision, and eye patch).  There is some active bleeding despite my thoroughly singed retina and some rather annoying floaters.  I’ve been to the eye doctor twice and go back in two weeks.  My doctor decided to closely watch my retina and told me to stay home and relax – OK!!!!

    I’m not entirely sure if I’m done processing the fact that my right eye was in such turmoil.  Three rounds of laser surgery and two major surgeries are a lot under even semi-not-normal circumstances…but damn.  My left one now, too?  Give me a freakin’ break already

    I’m working so hard to overcome some maddeningly self-induced complications that most of the time I forget to breathe.  Everyone keeps telling me that I need to relax and not get so completely stressed out that I exacerbate my symptoms.  By staying home the past two weeks, I’ve really helped my left eye stay even keel – it’s not “good,” but it didn’t get worse. 

    So that means that I am in desperate need of some awesome stress management – easier said than done for me.  I’m like my father personality wise.  We get stressed out easy and don’t let it out and well, explode in some way, shape, or form.  I’m going to try to get back to yoga – it’s been tough because for a long time, I wasn’t allowed to do much in the way of exercise because of my healing eye.  Meditation is always another possibility…I can’t wait for this crazy cold winter to be over: bike riding and long walk time!

   I got a text the other day which made me laugh.  It’s a reminder that stuff happens and that you need to assess and keep trudging.  All-in-all, I think Round 2 went to me.

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Proud.

I am PROUD.  For the first time in my whole life, I am proud (well, for the most part) of my current diabetes care.  I’ve had diabetes for 20-some-odd years now and have either been too young to really understand or else too selfish and otherwise involved to stop and think about my accomplishments – I am talking specifically about diabetes.  Since February 2013, I have been in whatever ring of hell diabetic proliferative retinopathy occupies.  Going through the physical and emotional ringer this diagnosis includes, I have really stepped up to the bat and paid attention to my health care.  I’ve become vigilant in checking my blood sugar, counting carbs, eating right relatively right, giving the appropriate amount of insulin, tracking my data, etc.  I’ll take this even further: I’ve started going to a diabetes TEAM that won’t take my BS and that actually cares, talked about getting on an insulin pump, started using said pump, done that awful basal rate testing, carb:insulin ratio testing, iPRO programs – all that jazz.  

I have been doing all of these things.  Important things.  I’ve even gotten my pump and have been carrying it around on my hip pumping me full of that life sustaining ju-ju for the past few weeks (it’s been an interesting ride so far).  This past Thursday, I had an appointment with my doctor and I walked away with a smile on my face.  It was the first appointment in a very, very, very…very long time where I did not feel compelled to lie.  I didn’t feel compelled to stretch the truth and make something up.  I didn’t dread going into the office and didn’t make up some excuse to cancel – I didn’t just not show up.  The appointment was worth while.  The doctors acknowledged my hard work and were pleased with where my levels are right now.  

I’m proud that I’ve gotten down to the nitty gritty and put in the time and effort and am so extremely over the moon to see the fruits of my effort reflected in my blood sugars.  I’ve gone from days of A1c readings in the 12s (in the 9s and 10s on a sadly good day) to an A1c in the low 7 range.  I know that I still have room for improvement, but I’m moving in the right direction.  

It’s Not Like I have A Job Or Anything…

I work at a medical center and on my lunch break the other day, I passed a sign on a cork board for an adult diabetes support group.  In my forever excitement by meeting other diabetics, I decided to look into it and maybe even go and see what it’s all about.  Well.  The meetings are held every third Thursday of the month.  Great – I’m normally not busy Thursdays, so this might work.  The time? 1:30PM.  What. The. Crap.  Who can make that?  What’s the purpose of holding a support group in the afternoon like that?  If you have a job or anything, there is simply no way  I guess that’s a no-go.  What. The. Crap.

Eye See Almost Clearly Now…

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Bad Eye!

On August 19, 2013 I was wheeled into an O.R. to have the first of two vitrectomy surgeries. Little did I know that I’d be emergently repeating this process literally two weeks later.

**Quick back story: I spent my college years as a “non-diabetic,” meaning years of neglectful burn-out – physically and emotionally.  Through these poor decisions, I counted my lucky stars for my lack of complications…until I wasn’t lucky anymore. I have no other complications due to diabetes (KNOCK WOOD!)**

I was never so upset and/or disappointed in myself than when the ophthalmologist told me he saw some pretty gnarly looking blood vessels behind my right eye.  My left eye didn’t look as bad, but still hairy.  My next step was three laser surgeries on both eyes – which were nerve-wracking, bright, and (for me) uncomfortable bordering on barbaric (well, kind of).  My left eye responded to the lasers as it should; however, the right eye was a completely different story.

I was referred to another retina specialist who would evaluate my eye to determine if I needed surgery.  At this point, I wanted surgery if it meant being able to see properly again and getting back on track. I wanted to stop waiting around and hop on the road to recovery – whichever form it came in.  Basically, I was told I needed surgery and ASAP at that.  August 19th rolled around pretty quickly.  I never had surgery before and, despite working in the anesthesia clinic full time here at the hospital, was nervous to be knocked-out.  All went well and was sent home the next day (after spending a horrendous night in the hospital – did anyone ever experience bad diabetes care in the hospital??)  and spent the next ten days face-down with a gas bubble behind my eyeball hoping my retina stays put.  Two weeks later, my retina completely detached and I had surgery, round 2.  This time, Dr. B. put an oil bubble behind my eye so no more face-down fun.  I still have one (possibly two) surgeries left on my right eye, but good news being I will be able to see again (April!).  I currently see normally out of my left eye and my right eye is tremendously blurry – like looking out of the bottom of a glass coke bottle.

The moral of this story is that in a round-about way, two vitrectomies and six laser treatments has put me back on track.  It gave me the wake-up call I needed in order to light the proverbial fire under my butt.  I have my give-a-hoot back and without this hurdle, I’m scared to think that I’d still be neglecting myself. Surgery has reset the stage for my diabetes care…this whole experience has really highlighted my neglect/bad habits/extent of my burn-out.  I’m forced now to acknowledge my actions – or lack thereof.  Crap just got real, yo.  Complications are real. I just feel like a failure? Idiot? Disappointment?  I know this happens but damn.  I wasn’t ready for the guilt or shame that came with it.  Hindsight is always 20/20 and it’s cliche to say that if I could go back and do it over – the right way – I completely would.  I do realize that a diabetic can do absolutely everything in their power to take care of themselves and still have complications.  but knowing that I didn’t help myself…arrrgghh! Super frustrating.  There’s nothing I can do about it now.  So, I’m trying to breathe and reboot; move forward. 

One thing I wish is that more people would talk about their struggles.  For the longest time, I felt like I was alone and the only one out there tired of diabetes….that could also stem from the fact that I didn’t know any other diabetics, either. You find a lot of “what you should do” and “this is how this goes” online, but I don’t know.  Struggles are personal, I know…but…still.