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Posts tagged ‘complications’

Looking in the Windows.

Following through on these eye doctor appointments at Joslin’s eye clinic usually means carving out 5+ hours in the day.

Even though Rhode Island is assumed to have a short commute to Boston proper, with traffic it can take two hours to get into the city.  Which means that for a 1.30 pm appointment, we had to leave the house at 11 am to ensure that we arrived 15 minutes before the appointment time, then the hour and a half appointment (including dilation and exam … and waiting), and then the two hour ride home.

I could find an eye specialist closer to my home in RI, but I believe in the care team at Joslin.  They’ve been caring for me for almost 30 years, and when I was diagnosed with macular edema last year, it was caught so early that no one panicked, but everyone was ready.  They were ready to do all the close monitoring required to track this eye disease, and they were also prepared for any medical or surgical intervention, should things progress to that point.

I trust them.  My complications are “common” to them, in that they see long-established people with type 1 diabetes all the time, and they treat macular edema all the time.  My eyeballs are run-of-the-mill to them.

I have some anxiety about macular edema because it’s new to me, and scary, and I find it comforting that my eye disease is something the Beetham Eye Clinic cares for every day.  It might feel like unfamiliar territory to me, but it’s just another day at the office for them, and for whatever reason, that comforts the hell out of me.

The staff at the eye clinic are very personable, and the technician who put in the dilation eye drops and tested my vision prior to the exam was extremely kind.  Their compassion helps put the feelings of trepidation to rest.  I don’t particularly care for the personality of the doctor, but in these appointments, we don’t really talk about “the whole patient.”  The focus is on the whole eyeball.  In this instance, I am willing to give on the relationship side of the HCP/patient equation in favor of his expertise.  Besides, it was easier to feel less aggravated by a doctor who speaks more to the computer screen than to the patient because this time, the news continued to be good.

This screen is how your eye looked in December,” pointing to a swollen optic nerve and a bright, obvious fat deposit on that nerve.  “And this is how it looks today,” pointing to a screen showing significantly reduced swelling and a barely visible fat deposit.  “This is better.  Much better.”

“So I’m still moving in the right direction?”

“Yes, this is good progress.  We can continue with appointments every six months.”

Last year, I had no idea I had this complication.  The symptoms of macular edema are hard to detect unless the eye damage takes a significant turn.  I had no idea something was brewing in my eyes until it was detected – and early, at that – by a dilated eye exam and a team of excellent doctors.  Eye-related diabetes complications unnerve me, but I’d rather know about them and track them aggressively rather than be surprised by them and experience irreversible damage.

We spent hours in the car getting there, considerable time in the waiting room, and then hours in the car on the drive home.  But I’d do it all over again, and will in a few months, in order to keep close watch on this diabetes complication.  My doctors can only help me with the things I let them know about by way of routine exams and screenings.  Informed doctors make me an informed patient, and everyone being well-informed helps me stay healthy.

I’d rather hope to regain good health than to fear the unknown.

Filling Back Up.

It whispered in my ear two January’s ago, when a low blood sugar came too close to becoming terrifying as I felt the whoosh of that bullet go by. I’d never felt anything like that before, that aftermath of fear and numbness.  Then I marked twenty six years with type 1 diabetes, and I just wanted to outrun this disease, to stay ahead of it, to pretend that it can’t ever possibly catch me.

Then there was this weird feeling, one I’ve never felt before.  It wasn’t depression, I don’t think, because it didn’t feel … I don’t know … like anything I’d ever read about or been warned about by my doctor.  I didn’t feel uncontrollably sad, and I didn’t have thoughts that would have concerned my family.

There was this emptiness, though.  And I can’t put my finger on where it came from or what its role was in my life.  Not an all-consuming feeling, but it did strike me at the oddest times, like during a conference when I was hoping to be more social, or during a movie that was supposed to make me laugh, or like when I would be in the car by myself and pull into the driveway of my house, and I’d feel lost.  And empty.   Coming into the house and seeing my happy daughter and my husband filled me back up, but for those brief moments before opening the car door and letting the sounds from outside come rushing in, the quiet was overwhelming.  I’m normally a happy person – quick to laugh, and happy to be surrounded by people – but I suddenly wanted to be alone, only being alone made me feel better, for a few minutes, then ultimately worse.

I talked with some people, including my husband and my closest friends, trying to understand why I felt this way and how to keep the feelings from becoming everyday.  It wasn’t all diabetes-related, but there was something about having had this disease for twenty-six years that made me feel trapped.  I started doing destructive math in my head, about how nothing had been introduced into my life that I’d had longer than type 1 diabetes.  Diabetes has been part of my life for longer than school, longer than any romantic relationship, longer than any hobby, longer than any car or t-shirt or memory. I thought about life’s milestones and the influence of diabetes on each one, sometimes just a light touch, not enough to leave the smallest mark, other times a heavy-handed drag of claws.

A few months after marking the twenty-sixth anniversary of my diagnosis, I turned 34 years old and felt convinced that I was having a mid-life crisis.  I feared death, actively and aggressively, nervous to go to sleep at night because of the low blood sugars that sometimes crept in.  I started feeling nervous about unreasonable things.  Panic attacks, like the ones I had back in college (when my parents split and my immediate family life was very unsettled) revisited for a few weeks, making my chest feel tight and making me wonder if it was indeed panic or was I having a years-of-type-1-diabetes-induced heart attack.

But then I started filling back up, emotionally.  While marking a diabetes anniversary was the catalyst for darker times, acknowledging the feelings that made me feel unsettled made healing easier.  I didn’t see a therapist (though I would if these feelings were to resurface) and I didn’t add medications to my list (though I would have, were they necessary), but I did ease myself into things like family trips, private (non-blog) journaling, and finding time to dedicate to quiet jogs that stopped my brain from going into panicky overdrive.

One afternoon, I realized it had been days since I’d felt empty.  Weeks went by, turning into months, and then the emptiness started to become harder to remember, harder to pinpoint the “why” of, and life felt more like I remembered before my twenty-sixth diabetes anniversary.

I don’t miss feeling that way – all that emptiness – but I’m not surprised that I felt it.  Diabetes is intrusive and touches everything, like a kid with grubby hands.  For decades, I didn’t mind wiping away the fingerprints that were left everywhere, but last year, I reached not so much a breaking point, but a moment when I couldn’t bend things any further without snapping.  I didn’t want to deal with this disease.  I was mad.  Overwhelmed.  And then that empty.  It was a strange grieving process for a disease that wasn’t going anywhere and for a life that wasn’t over.

It was raining a little when I started running this past Tuesday morning, September 10th, but I decided to go anyway.  I set out after sticking my Spibelt underneath my shirt instead of over it, to protect the Dexcom receiver from the rain.  Sneakers worn from a year’s worth of logging miles and my pump clipped to the top of my pants, I ran.  I’m not a pretty runner – I slog and huff and puff and probably resemble more ‘laboring pug’ than ‘actual human’ while I’m on the trail, but I made the decision to keep going.   With each step, it didn’t get easier.  I wasn’t riding endorphins during my run, and I felt the strain on my muscles and my resolve, but I kept going because it’s good for me to run.  It’s good for me to try.  It’s good to feel healthy and to look healthy and to be healthy.

The following day, Wednesday the 11th, I marked my twenty-seventh anniversary with type 1 diabetes.

I wish I had a more gracious outlook on my experiences with diabetes, but I don’t.  I wish I felt that it was some kind of blessing, but to me, it isn’t.  It’s a thorn in my side that digs in deeper with every passing anniversary, but fuck you, diabetes.  I’m tired at times, but I’m not stopping.  I’m afraid, but I’m still going.  Diabetes has brought me to some of the edges of life, daring me to look into the abyss and wonder just how long I’d know I was falling before I hit the ground, but there’s power in that.  I’m living with diabetes, with all the accompanying ugliness and arrogance, power and determination, all the perspective and perseverance and bitterness, all the fear and fearlessness that comes with any life, but is micro-scoped and magnified by a disease that never, ever takes a breath and doesn’t leave my world until I do. 

Yesterday, my daughter and I baked a cake, but I didn’t eat it, or explain why or why not.  She wanted to make fancy treat, and I wanted to see her smile because she fills my soul.  We put candles on it, hummed a sort of tuneless ‘happy birthday,’ and blew them out, marking a celebration of absolutely nothing and at the same time, everything.

You Want to Try Again?

“You want to try again?”



(Thanks for your comments and emails yesterday.  The support found in these kinds of patient communities help so many of us to keep trying … again and again and again.  Thanks for what you’ve done for me, and what you do for so many.  Now go outside and roll down a hill, because it’s pretty fun.  Just be sure to wear shorts under your dress.)


A few weeks ago, I was diagnosed with macular edema.

It’s a complication you can’t see, one that I can’t see until I can’t see.  Sophisticated computer equipment and  camera technology have afforded me the opportunity to find out early, giving me the chance to track this issue closely and opt for aggressive treatment options (laser surgery, medicated eye drops, intra-ocular steroid injections) when the time comes.  I feel raw and vulnerable, but I have information.  I have access to excellent doctors and specialists.  I have options.

I also have a bit of a stomach ache because when I asked, “How can I keep this from becoming more of an issue, going forward?” the response was, “Keep your glucose control as close to ‘normal’ as possible.”

It’s the “as possible” bit that throws me.

It could have been the birthday cake?

It could have been the cupcakes I snuck, and lied about, as a kid?

It could have been  NPH and Regular and hormones and the “brittle diabetes” moniker that they wrote in marker on my chart at the hospital made “normal” a definition built on shifting sand?

It could have been the pregnancy hormones, or the period of diabetes burnout I experienced after my daughter was born?

It could have been anything.  Everything.  It could have been the years of struggling.  It could have been the quick transition to tight control.  It could have been bad genes, or good genes, or tight jeans.  It could have been everything I did, or didn’t do.

The truth is, it was type 1 diabetes. 

We don’t talk about complications often in this community, and I hope that’s because many people aren’t dealing with them.  Discussions about “what could happen” are often left in those quotation marks, as if that holds the threat captive.

But after decades with type 1 diabetes, complications may happen.  Retinopathy, kidney issues, depression … the list is long and a good attitude, a determined mind, and even good control don’t keep these issues entirely at bay.  I’ve had my share of issues with my eyes.  In the past, I’ve seen some cotton wool spots in my eyes.  And during the course of my pregnancy, retinopathy near the macula dictated a c-section delivery for my daughter.  And now, this diagnosis of macular edema in my right eye.

This doesn’t mean I’ve failed.

I am sharing this because it’s real life with diabetes.  This is what’s happening, and even though I don’t want people thinking that diabetes complications are necessarily a guarantee, they also aren’t a mark of failure.  I work hard to manage this disease.  I will keep trying, even though I know there will me more radar blips, and more moments that cause momentary tears but then renewed determination.  There’s so much personal responsibility, so many moments of, “Well, you have the tools to manage this disease, so why aren’t you hitting the mark?” Diabetes is unique, in that way, with complications often viewed as a result of the patient not working hard enough, when in fact, they are the result of diabetes.

By writing this, I’m opening myself up to people who want to point fingers and to say, “Well, it won’t be my kid” or “It won’t be me.”  I can understand that.  I didn’t think it would be me.  I hope it’s not you.  But it may be you, and in the event that it is, I want you to know that you aren’t alone.  Diabetes complications need to be talked about, because the guilt that comes with their diagnosis can be crippling, melting away the value of our efforts.  It’s easy to become overwhelmed when diabetes seems to be the leading cause of leading causes.  For me, the diagnosis of macular edema made me want to wallow in self-pity for a while and hate diabetes, and I did that for a few days.  I cried a little.  I combed through internet search returns.  I hugged my husband and my daughter, burying my face in the chaos of her pigtails and inhaling the scent of unconditional love (and baby shampoo).  I called my mom.  I talked with a few friends.

And then I moved on, because if I stay in that pool of guilt, I’ll drown.

Guilt is a misplaced emotion when it comes to diabetes, and to related complications.  It’s not my fault that I have diabetes.  It’s not my fault that I have eye complications.  But it is my job to take care of these issues, and to work through the moments where I want to give up.  The guilt gnaws but I can’t let it take too deep of a bite; I owe myself more than that.  The emotional ebb and flow of diabetes has more impact on my happiness than the actual fluctuations of my blood sugars, so I won’t be beating myself up about this.  But, as I write some of this, I’m alternating between hitting keys and wiping tears angrily off my face, which pisses me off because even when I make a conscious decision to block feeling bad and guilty about it, I’m still unnerved.  I want to be tough, but I’m not as good at that as I’d like to be.  I want to be strong for my family, but sometimes I need them to be strong for me, in the moments when I’m buckling a little. (Which is why I need to thank Scott, Melissa, Kelly, and Jeff for being sources of information and good hugs last week as I was finding my footing with this and away from home.  My family isn’t limited to marriage or blood, and I’m thankful for that.)

So they checked the box, the one that says, “Complicated.”  But I knew that, far before it was seen in my eyes.  Life with diabetes is complicated.  Life without it is pretty damn complicated, all on its own.  But it’s mine, this life, and it’s still good.  When I come to the end of the very last day, I want to feel happy.  That’s more my goal than an A1C number ever was, or ever will be.

Life moves forward, complicated as it may be.


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