Sunday, January 12, 2014

Confessions of an AWOL Blogger

So. Hi there.

I’ve been gone for a bit. I made this blog private while I was resisting the intense urge I had to delete it and forget that it ever existed.


When I started blogging, it was a class project that I had no plan to keep up with but the end of the semester coincided with the first annual DBlogWeek and I decided to give blogging without a grade hanging over my head a shot.

And I loved it. I loved connecting with the D-OC in this way that was new and different for me.

I was far from a daily writer, but I wrote when I was moved to. I loyally participated in DFeast Fridays, then I decided to go for my first NaBloPoMo, and a few months later, I participated in the inaugural HAWMC.

During that time, I realized that a few people were reading and, on occasion, were feeling some sort of connection to my words and experiences. The private tweet or email or comment that I’d get once in a while saying “hey, me too” was more than I could have ever hoped for.

Throughout my time in grad school, my blogging has been sporadic at best. I’ve found that most of the time, something has to be “wrong” in order for me to feel compelled to write. So over time, my posts became heavier and more emotionally charged. Actually, I’d say almost everything over the last year has been entirely emotionally fueled. I’ve always said that the things that are the most difficult to write are those that most need to be written, but everything I was writing felt as though I was bleeding onto the page.

Over time, the “hey, me too” gave way to the sound of silence. As the posts became more intense, the responses dwindled and those that I did get became more and more negative.

As I was discussing the irony of being a psychiatric nurse battling with a relapse of an eating disorder, I was told I was being irresponsible and glamourizing the lifestyle. While trying to display that no one is immune and that mental health issues can impact the people you’d least expect who appear to have all their crap together, I was being admonished for actually being who I am – someone who for all intents and purposes is a productive member of society fighting a very private and lonely battle… against myself.

I was being judged by the people who I was looking to for support. When I was in most dire need of the quick “me too” or “hang in there” message, I was very loudly being told that not only was my voice unwanted, but such things had no business being discussed in “a poorly attempted diabetes blog.” (Yep, that's a direct quote).

While I had everything locked down and didn’t feel as though I was obligated to write, I realized why I hadn’t been strictly blogging about diabetes. Not only is there far more to me (and all of us) than diabetes, but my experiences in healthcare with people who are truly struggling with this disease down to the very core of their being made me realize that I have no right to complain.

Of all the patients I work with in my capacity as a student, I’d say at least 75% of them have diabetes. Most are dealing with it as best they can but those who struggle have impacted my life in a permanent way. I’ve encountered the teenager in the ICU who decided the prospect of a life with diabetes was too overwhelming after the exhaustion that came after 10 years of it and overdosed on insulin. I’ve met the pregnant PWD who wanted nothing more than to be a mother, but was struggling with the potential of her future child being a PWD. I’ve met the patients in their 70s who are free of complications and want to end their lives by their own hands so they can leave this earth before complications catch up with them. I’ve seen the PWD who’s been in DKA over a dozen times due to forgoing insulin in order to be able to afford to provide it for the d-children in the family. I’ve seen the faces on adults, children, adolescents, and the loved ones of these patients when news of a new diagnosis is shared. I’ve seen the looks of shock, terror, disbelief, and grieving for the life these people “could have had” happen all at once within a tornado of emotion that I know all too well.

I’d be lying if I said having diabetes wasn’t a struggle for me at times. But witnessing people in the midst of those kinds of struggles – people who would choose to end their lives rather than live one more day with diabetes – that’s just not my struggle. My struggle is with my own demons. With my uncanny ability to be my own worst enemy and hurt my mind, my self-esteem, and my body in ways that no one can see and everyone brushes aside whenever I try to reach out for help. A demon that was resting quietly until diabetes and the twisted relationship with food that it demands for good health woke it up and it has been gaining strength and dragging me further and further down over the last 5 ½ years.


That’s my true struggle. Whether or not I’ll continue to write about it – or anything else – I’m not sure. But being in my position has given me enough perspective to know that exclusively writing about diabetes isn’t what’s right for me. It would only be a means of ignoring my true struggle and that's more than I can expect of myself anymore. 

Monday, August 26, 2013

Diabetes Art Day - Strip Safely Edition

D-Art in the name of Test Strip Accuracy? I'm in.


Every number leads to questions, how/why you're there and how to proceed. We need to be able to trust what we see on our meters. 

Monday, July 22, 2013

Disappointment Part 2

A couple of weeks ago (about a month after the disastrous Endo appointment), it was time for my yearly physical with my PCP. It was an early morning appointment, before her nurse even arrived for the day, and I was looking forward to sitting down one on one and talking with her about my year and how I was doing. My doctor has always been almost annoyingly thorough and she schedules an hour for her physicals because that’s time she needs to cover all of her bases.

My appointment was at 8. Right on the dot, the secretary brought me into the room and told me to change into the stylish paper gown and that the doctor would be right in. At 8:20, she came in… and at 8:35 she was gone. The appointment was nothing short of a disaster. I wanted to talk to her about how stressed out and unhappy I’ve been. I wanted to ask her if she thought some medication would help me navigate through it all. I wanted to tell her how sick I’ve been feeling and ask for mono and cortisol level tests, amongst others, to see if there’s anything physiologically askew. I wanted to ask her if she thought we should repeat the EKG from last year, in case something changed in light of all of the stress I've been under. I wanted to tell her how well I've been doing with my asthma, and talk about maybe reducing the dosage of my maintenance inhalers. Every time I tried to expand upon the questions she asked me, she cut me off and seemed uninterested. In fact, the ONLY thing she said to me, at all, was “you’ve gained weight.”

I reminded her that she told me I was “dangerously thin” at my prior appointment. She talked over me stating that it must be hard to workout with school. I told her I still workout 7 days a week and she kept on talking right over me when I tried to tell her about the stress.

She was so uninterested in me and what I had to say, in fact, that she doesn’t even know I passed my boards. She doesn’t know I currently have not one but TWO RN jobs simultaneously while taking summer classes. She doesn’t know that my love and I have been together for just about two years. She doesn’t even know that in October I lost my Grammy.

After she left the room, the nurse came in and gave me a pneumonia shot that I didn’t even know I was getting. I spent 4 days sick from the side effects of that shot and I just regained full range of motion of the arm she injected me in.

I left without scheduling my physical for next year.

Later that day, I had my appointment to get my yearly thyroid ultrasound. As soon as the sonographer, who's done my scans for the last 7 years, saw me, her face dropped. Once we got into the room she told me I didn’t look good to her and while she didn’t want to pry, if I wanted to talk, she’d listen. She told me I looked too skinny to her – I told her I had gained weight back, and she said she was glad she didn’t see me when I was thinner because she would have been incredibly worried. She said it sounded like I was spreading myself too thin. She said she knows everything I’m doing right now will be worth it eventually but it’s not worth it if any of it comes at the sacrifice of my health. She was wonderful. Someone who sees me once a year for 15 minutes tops was there to listen and support me when the doctors who know me and my history better than anyone else didn’t seem to care.

It made the feelings of being deserted by my doctors even stronger. Maybe since I've been doing so well, they expected my appointments to be no big deal and expected everything to be fine. Maybe I wasn't assertive enough that things weren't (and aren't) fine. But as doctors it's their jobs to make sure that things are ok before a patient leaves the room. Maybe they were looking towards me as being the "easy" appointment of the day and just refused to see things otherwise.

Whatever it was, I haven't felt this scared and alone with my health since before diagnosis. And feeling this way at a time when I barely have the energy and motivation to take care of myself, is a huge problem that I have no idea how to fix.

Thursday, July 18, 2013

Disappointment: Part 1

I’ve spoken a lot about how highly I’ve always regarded my endo and my PCP. Were it not for them working as a team since the beginning, I doubt a diagnosis ever would have been reached when I was presenting with all of those weird symptoms 5 years ago.

Maybe I thought too much of them. Maybe I set my expectations of them too high. When expectations are that high, there’s really nowhere to go but down and the mighty have fallen in the last month and a half. In that time I’ve had appointments with both of them and the appointments have left me so heartbroken, so disappointed and feeling so deserted by both of them that I’m currently questioning if I even trust my care to them.

It started with my Endo. I went in prepared to pass ongetting on that damn scale for obvious reasons. I went prepared to talk to her about the liberties my employers have been taking with her note stating that I cannot do last minute overnight shifts. I went in prepared to get a little encouragement about how hard I’ve been working to take care of myself even in the midst of all of this stress with school, taking (and passing) my boards, and working two jobs, one of which keeps me awake until the wee hours of the morning, has shuffled my sleep schedule, and has me going on about 4 hours a night – aka “fumes.”

I mentioned the note and how my employers have been doing everything in their power to work around it. She told me “that’s how it goes” and I should expect it in the medical field. I politely told her a planned overnight shift is MUCH different than being told at 11:25, that my shift which was supposed to end at 11:30 is now not ending until 7:15 am. Not only does that leave me without enough healthy choices of food to get through another 8 hours, it demands that I will be awake for over 24 hours. Straight. Despite explaining all of this, she persisted that she couldn't word the note any differently and I just had to get used to it.

Then she breached the topic of me not getting weighed. I told her why. She persisted that she had to get my weight and that she’s not at all worried about my weight because I’m a “skinny Minnie.” I told her that I knew I weighed more than I did last summer. She said that maybe that was too light for where my body wants to be. I (not so) kindly reminded her that she said that was a great weight for me. I told her what I've put my body through in an effort to maintain that weight and how I've been on a dangerous spiral. She still insisted that I get on the scale.

So I walked out of the exam room, in tears, got on the scale – backwards – and proceeded to watch her assistant pull out the red pen.

After that appointment, I was crushed. I felt like my biggest support had just pushed me out of a moving car. She was contradicting herself and the medical opinion that had been at the forefront of my mind and impacting every single decision I made about my body, my appearance, and my self-worth for the last YEAR and she just shrugged it off as if to say “oops, guess not.”


I spent that day agonizing over what had happened. The appointment was so weight focused that I didn’t even hand in my logbook printouts. I realized I still had it with me when I was at the checkout window but I was too upset, embarrassed, and confused to go back.  I boycotted diabetes that day. I barely ate anything and I didn't use my lizard spit. And I was fine. My blood sugar did not venture over 120. And the fact that I was fine makes me question her even more. What if the last 5 years were wrong? What if none of it ever had to happen? 

Wednesday, July 3, 2013

Strained

The minute you step foot into your first class of nursing school, youre submerged into the wonderful world of care plans.


I still have nightmares about them.


The basis of a care plan is a nursing diagnosis. This diagnosis can apply to a patient, their loved ones, or a community and helps guide care and interventions for the patient.

One of these nursing diagnoses is Caregiver Role Strain, also called Caregiver Distress or Caregiver Burden.

This diagnosis applies when someone is overwhelmed about providing day-to-day care for a loved one. Caregivers usually report feeling exhausted, sad, and anxious. In my experience, it takes a lot of time for a caregiver to own those feelings because, by and large, these feelings make a caregiver feel selfish. Most parents who are in this role brush it off as part of being a parent but it's above and beyond that its putting them in the role of medical professional in the blink of an eye. These caregivers have other demands and trying to balance them with the needs of a loved one can make the caregiver feel as though he or she is being pulled in too many directions.

Basically, the stress of providing care outweighs the tools the caregiver uses to cope with the situation.

This can lead to feeling frustrated, angry, irritable, nervous, anxious, depressed, and unsatisfied with the care you provide and the relationship you have with your loved one.

As a nurse, when I see this I know the recommendations to make such as encouraging involvement of others who can assist and utilization of community resources that could ease the burden. The recommendation thats most important and caregivers have the hardest time with is taking time for themselves.

But what happens when the strained caregiver is the nurse?

What happens when the nurse gives so much to her patients that she doesnt have anything left for herself?

What happens when this nurse is diabetic and not properly caring for herself is not a feasible option?

What happens when the daily self-care thats necessary just to keep her alive has become just too much because the stress of caring for patients every day leaves her with nothing left to invest in taking care of herself?

As someone with diabetes, I know burn out well. I know how completely depleting of mind, body, and spirit this disease can be. As a nurse, I know how draining the job can be. Right now, I have two jobs on top of school and both worlds are colliding head first into my diabetes life and its leaving me just blindly going through the motions. Eating on the run without giving much consideration to what Im consuming, testing my blood sugar solely before my 2 doses of lizard spit, and treating based upon how I feel rather than concrete numbers.

And Im frustrated. Im frustrated because Im failing the most important patient that I will ever be responsible to care for.


Im failing myself.


Absolutely honored to have this post nominated and selected as Best T1.5 post for the month of July. You can see all of the other categories here

Monday, June 17, 2013

Red and Black

I remember my very first endo appointment. Before even stepping foot into the exam room or meeting my endo, I was placed on the scale.

I winced at the number, but still felt pretty good that I was nowhere near the 190.4 pounds I’d seen 4 years earlier. The assistant wrote the number, in large print, on a form with my name and put it on the outside cover of my file for the world to see. When it was time for my endo to come in, she’d be greeted by the file with my weight listed higher up and more prominently on the page than my name or my presenting complaint.

I remember that during that meeting, my weight was never mentioned once. My endo and I talked at length about how I looked healthy, but felt far from it and had no idea what was going on.

My next appointment a month or so later (the one where I received my official diagnosis) also began with me stepping on the scale before entering the room. This time the assistant took my weight, looked back at the prior cover sheet of shame to see my weight at that visit, calculated the difference, and wrote, in even bigger print than she recorded my weight, the difference between my two weight measurements and circled it in black pen. Now it was the difference in my weight from the prior appointment prominently displayed on the page to greet my endo before she walked in the door. 

Since that day, for each quarterly appointment, I told them I didn’t want to know my weight and closed my eyes when I got on the scale. Over the years, I encountered the assistant who didn’t clear my weight from the scale before telling me I could step off (and open my eyes to do so safely), the assistant who talked to herself while she was taking/recording my weight (thus announcing my weight not only to me, but to everyone around me), and the assistant who last consumed a proper meal sometime in the 70s and set the scale so low that I could hear every painful notch she added to it until finally landing on my weight and declaring “oh I had no idea you weighed so much.”

Every time, the difference was recorded in black pen and prominently circled on the cover sheet of shame right on the outside of my file. And every time, before even entering the room, I could hear my endo taking a minute to look at that sheet. Before walking into the room, she had already boiled me down into numbers (weight and bloodwork).

My endo never made a big deal of my weight, but it always came up in the “you’ve lost so much weight! You look great! You aren’t doing anything unhealthy to lose this weight, are you?” Back then, I wasn’t, but I was certainly excruciatingly (and unhealthily) aware that I’d be getting weighed. Each exclamation that I looked great at my new weight made me question her prior assertion that I looked great and made me deduce that for her, thinner must have meant better. With every appointment, I was painfully aware of my weight and any amount of loss was never enough – I always wanted to be thinner to show her just how “healthy” I could be.

Then I had an appointment scheduled on quite possibly the worst day ever - December 26th, immediately after the day in which in consume the most food in the entire year. I was so terrified I tried to move the appointment but was told my scripts wouldn’t be refilled if I did that. So I went, took a deep breath, and stepped on the scale.

I stepped down expecting to see the assistant grab the black pen and calculate the weight difference as she had so many times before, but she didn’t. This time, she pulled out a red pen. As if she were a teacher awarding a failing grade to the class screwup, she finished her task, recording and circling the weight difference and bestowing a scarlet letter upon the page of shame telling my endo before she even saw the number, that I’d gained weight. During that appointment, my weight didn't come up. At all. No "you look great" no "how often are you working out?" Nothing. Nothing to suggest to me that my endo still thought I looked healthy.


And now every time I go for an appointment, after stepping off the scale I hold my breath waiting to see which pen the assistant will choose – red or black?

If the title of this post made you think of this, you're awesome. 



Truly honored to have this post selected as Best T 1.5 Post for the month of June. 

Tuesday, June 11, 2013

Just Talking Episode 191

It's an absolute honor to be on "Just Talking" this week. I'll admit, I was nervous, but having been a fan of the podcast (and "knowing" Chris from all forms of social media) it really did feel like chatting with an old pal and the hour flew by. You can listen to my efforts at talking for an hour without cursing here: Just Talking Episode 191