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Posts tagged ‘chronic illness’

What to Work On.

I’ve gotten lazy in my diabetes management.  And I’m not proud of it.  My recent A1C result was still in my goal range but not where it was a few months ago, and I’d love to return to that level of control.  Thing is, I’ve gone soft when it comes to following through on my daily diabetes duties.

Yeah.  I’m at that point in the postpartum recovery thing:  finding ways to up my diabetes game.

I can check two things off my to do list with confidence:  I wear  my Dexcom every, single day and I also have been on top of my doctor’s appointments.  Those two things get big, fat gold stars.

Other stuff needs some grooming, though.  Here’s my wishlist:

  • Check fasting BG immediately after waking up.
  • Calibrate CGM right when it requests calibration.
  • Pre-bolus at least 15 minutes before eating.
  • Exercise 3 – 5 times a week.
  • Sleep more than 5 hours a night.
  • React faster to the high alarm from my Dexcom.
  • Rotate my device sites better.
  • Remember to eat more than coffee before 1 pm.

Hmmm.  That’s a lot.  Plan of attack for each:

  • Check fasting BG immediately after waking up.  We just moved the little Guy out of our bedroom and now he’s sleeping in his crib in his own room, so I have a little more time (3 min versus zero min) in the morning before I have to run and grab him.  I need to return to the habit of keeping my glucose meter on the bathroom counter and using it before I brush my teeth in the morning.
  • Calibrate CGM right when it requests calibration.  Ugh.  This just requires being less of a lazy tool and just checking/calibrating ASAP instead of ignoring the little red blood drop.
  • Pre-bolus at least 15 minutes before eating. This one is admittedly going to be challenging, as my schedule is a little non-scheduley these days.  My son is a busy little creature and also unpredictable, so it’s challenging to find the “right time” to do things like change out my insulin pump, eat breakfast, schedule conference calls.  But as he gets older, he does seem to be settling into something resembling a pattern, so maybe this will get easier.  I’ll try to pre-bolus.
  • Exercise 3 – 5 times a week.  This one is already going in the right direction.  As mentioned, I joined a gym and that gym has childcare, so there’s no excuse.  Except days like over the weekend, when I was away for work, or today, when the little Guy is so sniffling and booger-gross that I don’t want to bring him to the daycare and expose any other kids/adults to his germs.  We did go for a walk around the neighborhood today, clocking in at least a little bit of exercise, so that helps.  The weather warming up will help here, too.  This bullet point is one I’m putting like half a gold star on.
  • Sleep more than 6 hours a night.  OH HA HA HA HA.  The baby thinks 5.30 am is when human beings should wake up.  The early morning hours are gorgeous and I love the quiet of being awake that early, but around 10 pm my body starts to give up on doing body things, although I rarely make it to bed before 11.30 pm.  I need to work on this sleep thing.
  • React faster to the high alarm from my Dexcom.  Again, this one is something I just have to DO.  No excuses and no reason not to.  My high alarm used to be 140 mg/dL (pre-pregnancy and during pregnancy), but I’ve moved it to 180 mg/dL in the last few months.  I should be responding to 180s.  I will work on this.
  • Rotate my device sites better.  Yep, this is also a need.  My thighs have become a permanent home for my Dexcom sensors, but I am okay with the back of my hip or maybe my arm.  I’ll try to get creative.  As far as pump sites, I’ve been working on rotating those better, too.  Maybe it’s time to try a lower arm site?  (Has anyone ever done that and does it hurt??)
  • Remember to eat more than coffee before 1 pm.  Yeah, this is another whoops.  My mornings are generally a bit crazy, and sometimes I’d rather keep my CGM graph steady instead of interrupting it with breakfast.  But this is backfiring because I then get so hungry around lunch time that I eat the fridge, causing a nasty post-lunch bounce.  Moderation here.  Eat regularly throughout the day and I’ll be less likely to unhinge my jaws and devour the contents of the cupboard.

I hope writing this crap down will help up my accountability and will inspire me to keep moving forward.  If I can make one or two of these become habit in the next few weeks, I’ll mark that as a success.  Because backwards is all gross and disgusting feeling and also it looks like there’s a c-section back there and I am NOT going back to that.

I’m Not.

I’ve never had nightmares like this one before
Problem is, when I wake, it’s still there and I’m floored
Because every damn day there’s another news flash
Showing me that some leaders just follow cash.
I used to be iffy, and then was concerned.
But panic is what this new paradigm’s earned.

I’m a person and with me comes chronic disease
Not my fault but it’s mine until I cease to be.
I spend many hours maintaining my health
Despite big bites that it takes out of our wealth.
I have so many bills, premiums, and copays;
I sort them by health issue, person, and phase.
Hours on phone calls that are beyond numbing,
Yet bills for the baby I lost keep on coming.

“It’s not covered.” “Denied.” “You’re a burned down house.”
I wish I was that squeaky-cured research mouse.
“You can enter this risk pool.” But I need flotation
Not rejection from this powerful first world nation.

I’m scared and I’m nervous but I am empowered
Refusing to believe our whole country is soured.
I stand with my peers and I hope for the best
And until this is sorted, I refuse to rest.
I marched in a march and written my reps.
But there’s more I can do. There’s a series of steps.
Time to act, to rise up, to realign thoughts.
I know there’s a system.
It’s broken.

I’m not.

* * *

If you know of places where people can take action and raise their voice, please leave links in the comments. Liking a Facebook status or a Twitter post is good, but making phone calls, writing letters, and standing up for your rights can be so much better.

Diabetes Blog Week: Message Monday.

It’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community.  And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)?  Karen kindly brings us closer on Diabetes Blog Week by inspiring others to raise their voices.  So let’s do that.

Message Monday:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

My blog started back in May of 2005, admittedly mostly because I was lonely with diabetes.  I had lots of friends and community outside of my busted pancreas, but no one in my life who “got it.”  That frustrated me.  Made me feel lonely.  Contributed to feelings of isolation.

So I Googled “diabetes” and a long list of shit that would go wrong with my body as I aged came back as a search return.  Not fun.  At the time, I was 25 years old.  I wasn’t ready to think about my chronic illness in terms of a ticking clock.  I wanted more reasons to live, and live well, instead of reasons why I should tuck my islets between my legs (ew) and get ready to die.

Eff that.  I want to have a proper life after diagnosis, not one that’s dominated by fear.  Gimme some hope.

Which brought me to the blogosphere over a decade ago, and that desire to connect with people who intimately understand diabetes is what drives me to stay here.

Over the course of the last eleven years, my “message” has changed.  I’ve changed, so that makes sense.  When I was in my mid-twenties, I wanted to find others who were interviewing for jobs, starting relationships, living on their own, and making their way as an adult … with diabetes.  Confirming that a community existed, and was accessible, lit me up proper.

As I got older, I was interested in hearing about successful parenting with diabetes.  Not exclusively about pregnancy, because that’s not a thing for everyone, but about how families expanded through whatever means they felt were right, either through biological children, or adopted, or fostered, or kids of the decidedly furrier variety.  I really took a lot of pride in sharing my pregnancy six years ago, and again now, because it wasn’t perfect, or seamless, or without issue but hell, it was mine.  And it what I worked for.  And it was worth it.

When there were complications, I felt comforted by the community who had been there before me, and by the hope they provided as to life after diagnosis.  Same goes for diabetes-related depression.  Same goes for infertility.

Same goes for any moment in the last eleven years where I’ve felt alone or potentially isolated, but the community taps me on the shoulder and goes, “Wait.  You aren’t alone.  Turn around; we’re all in this together.”

There’s a level of support found in our community that I can’t properly say thank you for.  But I’m thankful.

Why am I here?  To share my story, as ever-changing as it may be.  To make a difference.  The stuff I share from my digital soapbox grows as I grow, leaving my goal simply to connect with my peers and to live well.  What am I trying to accomplish?  I still don’t know, but I have seen that I accomplish more, live more when I feel the support of community.

I don’t have a set “message,” but I do have a life, and it’s worth documenting if only to prove to myself that diabetes will not bring me down.

If anything, with the help of our community, I’ll force it to raise me up.

Guest Post: The Cost of Staying Alive.

Charity Shuster-Gormley is a native Vermonter who currently works as a mental health worker in a psychiatric hospital. She was first diagnosed with type 1 diabetes in the summer of 2000 at 15 years old. Charity holds a Bachelors degree in Psychology and a Masters degree in Marriage and Family Therapy. She lives with her husband, their 6-year-old Dachshund Amos, and 10-year-old cat named Bella, and today she’s taking over SUM to share her thoughts on what it costs to stay alive.

  *   *   *

Since the age of 4 I have lived with chronic health conditions. It started with an ear infection at the age of four, which developed into a chronic heart condition called a complete heart block resulting in the need for a pacemaker at the age of 25. At the age of 15, I had corrective surgery for my spine, which had developed serious scoliosis. Five weeks after this surgery, I was in the hospital again being diagnosed with type 1 diabetes.

It was not until about the age of 24 that I started to experience the cost of staying alive, first-hand. Up until then I had been able to stay on my mother’s cushy state health care coverage provided to her as an employee of the state of Vermont and to me up until the age of 24. I knew that my insulin was priced at between 50-100 dollars a vial when I was first diagnosed but until I had to figure out insurance on my own, I had this sense of safety and worry-free mindset and did not think about costs, or how I was going to get supplies.

My first experience a type 1 diabetic with my own insurance was being on Medicaid due to being in college still and the state deeming the insurance my college provided inadequate. There was this great program that was attached to it that I was able to sign up for that provided full coverage for all appointments and supplies that were diabetic related. Then there was the day I received a bill for my testing supplies. I called the insurance inquiring as to why I was being billed for this when it was supposed to be covered at 100%. I was assured by the agent I spoke with that this was indeed an error, and it would be taken care of. I breathed a sigh of relief as the panic of being a full time college student with virtually no income subsided.

Several days later I received a phone call from another agent. They proceeded to inform me that they had spoken with the pharmacy director and that ACTUALLY only insulin and insulin delivery devices were covered under the program I was part of. When I reiterated that this was not was the guidelines of the program stated and asked the reasoning that my testing supplies would not be covered the reply I received was this:  “Testing is not life necessary, ma’am. Only insulin and what is needed to deliver the insulin is.” I was in a state of shock at hearing this. I hung the phone up in stunned silence, still not believing what I had just heard. This was when I first felt the feeling of having to fight for my life.

Today my insulin if I was uninsured is going for $300 a vial. I am working in a psychiatric hospital as a mental health worker and not as a therapist in a mental health agency not only because of my background, but because the insurance I receive here provides me the coverage I need to be able to live. Turning down jobs due to the insurance being so poor or so expensive or both has been a very real reality of mine.

Hearing the CEO of Eli Lilly state that insulin prices are rising due to diabetes being such an expensive disease likely left me looking the closest to Medusa or Broom Hilda that I ever will. My husband turning to me and stating his perception that I am essentially renting my life for approximately $30 a day makes more steam come out of my ears at this thought then Old Faithful produces. Thinking about presidential elections and explaining to others the fact that my life is not just in my hands but in a whole countries who’s biggest concern might not be staying alive … I wake up each day, never giving up hope and faith that the majority of our country desires each and every human to live healthy lives, not having to feel anxious, feel out of control of their health, wonder if they will have what they need to successfully manage their health or have what they need to stay ALIVE. Unification and our voices are a key to the movement towards change I believe.

Our lives are NOT for profit. When you meet a person living with chronic illness ask yourself, “Do I really understand?”

How Real Do You Want It?

Over the last few weeks, I’ve been watching the articles about Lisa Bonchek Adams circle, ranging from the New York Times opinion piece by Bill Keller to the one written by Emma Keller (his wife) for The Guardian (which has been removed from The Guardian site but lives on in the archives), to the response piece written by Brian Loew at The Healthcare Blog and analysis by Susannah Fox on the Pew Research Center Fact Tank blog.

(That’s a lot of links in one paragraph.  I’ll wait while you click.  And please note that none of those links go to any dancing gerbil .gifs.   But this does.)

Lots of discussion about a patient who is sharing raw and unfiltered details of her experiences with cancer through social media venues.  For better or for worse, this is the new scrutiny of health on the net, and of real life chronicled on the Internet.

“Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? … Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?” – Emma Keller

For me, chronicling my experiences with diabetes, it’s not for the “outsiders” who are looking in; it’s for the people who share that same condition, same disease, same struggle and who learn, thrive, and persevere through the power of common community and understanding.  Readers may have the option to “turn away,” but for those who live with chronic illness, we have no choice but to look directly into it.

Is there a right way to deal with illness?  A wrong way?  How real do you want it?

 

I learned about living with type 1 diabetes, and the “forever” journey that it is, through other people who had it.  Blogging wasn’t the first time I came into contact with other people living with type 1 diabetes.  Community came through the Clara Barton Camp in North Oxford, MA, where every camper had type 1 diabetes and almost every staff member does, too.  But there was a lonely, isolating gray area between aging out of camp and the coming-of-age of the Internet where diabetes was difficult for me.  Being a teenager, and then becoming an adult, was a tough transition, and even though I had a good support system through my family, friends, and medical team, I was lost in a sea of people who didn’t understand how light diabetes could feel on some days and how heavy it was on others.

Some people are uncomfortable with the idea of sharing so much private, personal health information on the Internet.  Hell, I totally understand that sentiment, as I was fumbling through Facebook yesterday trying to figure out how to delete people I hadn’t interacted with in years.  It’s not a flippant decision, the one to advocate for your own health and to share your story.  Scrape past the hesitation and the fear, however, and you’ll find people who are empowered by sharing, and lifted up by a community that has intrinsic knowledge of the places that hurt the most.

Over the last few years, I haven’t felt the “diabetes won’t stop me!” mentality I unwittingly held close for the first two and a half decades with this disease.  Though my health is still good and I am grateful, I’m seeing the emotional and physical manifestation of years with type 1 diabetes in sometimes small, and other times enormous, ways.  Patients with diabetes are writing about climbing mountains and running marathons and giving birth, but we’re also writing about complications like depression, eye disease, and eating disorders.  Even if it makes you feel uncomfortable, it’s real.

Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet.  While it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.

To quote Morgan Gleason, the fifteen year old who contracted meningitis while getting an infusion for an autoimmune condition:  “I am the patient.  I need to be heard.”

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