Being an e-patient is one thing. Being an actual patient is another.
My finger is detriggered. You would think that after four of these (actually five, but one got done twice) surgeries, I would remember that the healing process takes time…and painkillers are needed to do the exercises to get my finger to fully extend. What I do remember is that it is so important to do the exercises, as much as it hurts, because otherwise… you can negate the whole purpose of the trigger release.
It’s a few days post-surgery and The Kid has developed a fascination with my stitches. I have stooped to use them for bribery. “If you put your pajamas on, you can look at them.” Anything to speed up bedtime.
The world continues to revolve while I am recuperating, so as I gather thoughts about last week (I was up in DC and have a head full of good things to share), I’ll give you some tidbits that you should know about:
- Kim Vlasnik made me cry. Not the Victorian-dab-your-eye-with-an-embroidered-hankerchief quiet cry, but a keening, gasping, aching cry. Her MedX talk captured the essence of what endures beyond the physical and why our community is important. I want to thrust my iPhone at strangers and shout: “Watch her. Listen to her. This. This.”
- Like treasure hunts? The International Diabetes Federation apparently does and is giving prizes out as a run-up to World Diabetes Day (November 14th). Here’s the details. You get pins, bracelets, t-shirts, and bragging rights.
- Yes, it’s almost Diabetes Awareness Month. Much like every year, we will begin to see posts from well-known organizations about the disease and people getting angry that this building and that building won’t light up blue for diabetes when they lit up pink the month before for breast cancer. Here’s a tip: take that anger and put it towards what YOU can do to help raise awareness or advocate for you, your family, or strangers with diabetes in your community or your government. We can light a candle or curse the darkness. You pick. Don’t know where to start? How about here. Or here. Or create something all your own. Every voice matters.
- The World Diabetes Congress (which will be in Vancouver) is calling for abstracts, beginning in February. They are providing 100 grants to attend for individuals from all over the world, which includes the registration and travel costs. What’s my beef? You must be 40 years of age or younger. I’m sorry, but that’s NOT right. I get that there are bright, young individuals who have things to say and want to learn… but there are also those who happen to be over 40 (ahem) who also have things to say and want to learn. To attach an arbitrary cut off age like this is… unacceptable. Yes, I’m going to inquire. Yes, I have something to say about it.
- Heroes sometimes wear shaggy coats. A Sweet Life, one of the best diabetes community media sources, is fundraising with Marjorie. Don’t know who she is? You need to know why she’s important to every.single.one.of.us. - and then help support A Sweet Life.
Off to do my hand exercises, which makes me look like I’m trying to channel The Bangles’ lead singer.
Walk Like An Egyptian.
Out of all the Schoolhouse Rock videos, this is my favorite. (I’m Just A Bill and Elbow Room are runners up.)
There is something magical about the number three. And that song (and the cover done by Blind Melon, too.)
But today, three is not a magic number. It’s the number of trigger finger releases I am supposed to have in a few weeks.
I say supposed to have, because like any empowered patient, I’m going to to do my research about having three fingers done on one hand when only one is actively triggering (although my pinky and my middle finger - hey!). I’ll ask around, look up information in medical journals and perhaps even get a second opinion by another hand surgeon. Why, you ask?
My Appointment Was Not What I Expected
The appointment itself was interesting, because if I had met the surgeon a few years ago, it would have been a different conversation. Here’s how it went (and my thoughts as it happened).
My appointment was for 12:10pm. Brought into a room by Jason with a M.A. on his name tag.
::What does M.A. stand for in this office? Master of Arts? I don’t think so.::
“So, why are you being seen today?”
::Does ANYONE read the reams of paperwork they make me fill out? Anyone? Bueller?::
I give him the lowdown.
“How do you know that it’s trigger finger?”
::Again, paperwork. Four previous trigger finger release surgeries.::
“You’ll get an x-ray and then the doctor will be in to see you.”
From the time I saw Jason and got two X-rays on my hand, it was another 40 minutes before I saw the doctor. He breezes in with a guy behind him wheeling a cart with a computer on it. His own personal stenographer for electronic health records.
He knows I have trigger finger. There are no questions. I didn’t get an opening statement in.
Because of my friends, Drs. Sean and Tamara Oser, who present an incredible session at Friends for Life, I know this statistic:
In a well-known study of the survey phase, Beckman and Frankel found that physicians prevented patients from completing an opening statement 77% of the time. Those who interrupted their patients did so in a mean time of 18 seconds.
He beat this statistic to death.
“Hi, I’m Dr. X (not his real name, although that would be neat, right?). So, let’s see your hand.”
He examines it. Palpitates the area where it hurts. I wince. He keeps asking me to open and close it, telling me to make a fist.
::I can’t make a fist, dude. My finger won’t do that anymore. If it did, I wouldn’t be here.::
He pokes at it again, while I explain that I’ve had trigger release done before, but not here and not for this finger.
“O.K., so I’m going to give you a cortisone shot.”
::He didn’t even give me options. Ask me if I’ve ever had a cortisone shot in the FOUR other fingers I’ve had trigger finger. Explain that I could choose: physical therapy, cortisone injections, percutaneous release or open surgery release. Four options. I know which one would work for me, for most Type 1 diabetics, but HE DIDN’T GIVE ME OPTIONS.::
“Dr. X, I’m not doing a cortisone shot. It’s been proven and published that it’s not a successful treatment option for individuals like me with Type 1 diabetes. Surgery is almost always done in these cases following a cortisone shot.”
He looks at me, then turns to the steno guy, who is now looking confused.
“I’ve done the research. I am an e-patient.”
He looks at me again. He says:
“I’ve done over 10,000 release surgeries. Most people with diabetes do end up with surgery.”
The steno guy is wide-eyed. Dr. X nods to me, then tells the silent interloper with the computer:
“We’re going to do surgery.”
He turns back to me, starts palpitating my palm again and asks if there is any pain when he presses here or here.
::Yes and yes.::
“You know that you’re already showing signs of triggering in your pinky and it’s only a matter of time before you’ll have to have the pinky and the middle finger done. So, let’s go ahead and do all three while we’re in there doing the ring finger.”
::I am so over this trigger finger thing. Whatever.::
After this brief conversation, he leaves and I schedule surgery, but not before he popped his head in and told me that I would probably want to schedule it at one surgery center over the other he uses, because the anesthesia company he uses does not accept insurance at the one closest to my house.
::In my next life, I’m coming back as an anesthesiologist.::
If this had been a few years ago, I would have blindly accepted the cortisone shot, then floundered for weeks dealing with super high good sugars and staggering amounts of insulin to bring it down, eventually ending up in his office again, this time to schedule surgery.
I have done a lot of research, talked with my friends in the DOC, and had this done four times already, I didn’t go in blind. I just came out angry.
Angry that I wasn’t offered a choice. Angry that I had to state that I was going to have the option he didn’t initially present to me. And then I am angry because I am not even sure I should have three fingers released when I know only one needs to be done right now.
So, for those of you who have had trigger finger release surgery, has anyone had THREE fingers done at once? What would you do?
And maybe the other question I have is this: Is it wrong to expect doctors to have a conversation with you about options, because right now, I’m as confused as the poor steno guy?
I’ve never heard anyone describe injecting insulin as graceful or gentle.
The needle bears down onto unblemished skin that begs to not be pierced. Nerves scream in anticipation as the metal bores underneath, invading the sacred temple of the body and pushes the very cells that give me corporal nourishment. It sears and brands the skin around it, leaving a physical scar behind as a permanent reminder of what I must do to stay alive.
If I told a stranger that I hurt myself on purpose daily, they would recommend psychological counseling immediately.
Not every needle insertion is a hot branding, but when you must, without fail, do this tortured dance for the rest of your life, knowing that you have endured over three decades of this, it begins to ache deeply. Even with smaller needle gauges and shorter lengths, no one has ever gleefully clapped hands and asked to be mutilated for their health.
Over and over, a lancet finds its target somewhere on a finger, slicing into the same tender skin that strokes my daughter’s hair as she drifts off to sleep. It’s become rote at this point, a slight turn of the head at the same nanosecond that the button is pushed to draw blood. A sting, temporary, to decide on the dosage of the drug that will keep me alive but could also render me unconscious or dead. That sting, several times a day, over time, is a weight that drags me to the bottom of the ocean, gasping desperately in my dreams.
Too much insulin and diabetes hurts. It starves brain cells and prevents me from making rational choices. The throbbing between my eyes competes with the violent contractions of my limbs to squeeze out the last vestiges of glucose within my muscles. My throat constricts, choking on the words needed for help.
Too little insulin and diabetes hurts. Toxic sludge sloshes through my veins, spewing poison into every organ and damaging the beautiful body my soul holds, shutting down the potential of a long life and health. The complications build an ugly monument where the delicate framework of what I am once stood.
The guilt crushes you, despite your best efforts of controlling what is uncontrollable. The questions of why build to a deafening roar. Labs slam your body into a corner, even when the results are expected. It infiltrates and infects those around you who love you and can’t live in your body or take the burden from you.
You may accept this disease. You learn to live with it, try to tame it, keep it in check and at bay. You talk about it, claim it, share your thoughts with those who understand. But it bites and scratches and never relents. It will sink its viper fangs into you and not.let.go.
No one said it would be easy. I knew it would be hard.
But no one told me when I was diagnosed that diabetes hurts.
I’m not being overly dramatic when I say this should be mandatory reading for anyone who comes in contact with a person who has diabetes - and that is pretty much everyone in this country (and quite possibly, the world).
The best article I’ve ever read about the psychological manifestations of the physical issues of this disease.
one of the most the most well-known diabetes blogger in the U.S. (and quite possibly, the world) and a person who has seen my ups and downs of diabetes and life since we met online before the DOC existed, Kerri just simply put my heart’s and head’s unintelligible aches into words.
This disease is not just numbers and data. It’s more than that, but often (too much), we are thrust under a spotlight (sometimes self-directed) and grilled about things that we may not have control over.
The guilt of complications, whether you have been “perfect” or like me, just “perfect” by blog moniker, is the same. We wander through days and nights with a tremendous burden that no one can take from us, but can add to the weight and guilt without knowing.
We don’t talk about complications enough, because to do so is soul exposing and frightening for anyone who wants not judgement, but understanding and support. We often, unfortunately, get judgement…. but no one judges as harsh as we do.
So, thanks to diaTribe for allowing Kerri to say what needs to be said:
Complications happen, and discussions about them shouldn’t be relegated to whispered fears in the bedroom after the lights are turned out. The language around complications needs to change from one of fault and guilt to that of perseverance and renewed hope. We, as a patient community, have the right to disclose our diabetes complications without being blanketed – and suffocated - by judgment.
Kerri says we shouldn’t just talk about it when the lights are out and I also believe that the light in which we share our complications and fears about them shouldn’t be under a bright spotlight of interrogation… starting with ourselves.