Untouchable

"I'm not going to fucking touch the diabetes," a doctor, with a thick gold chain and chest hair peeking out from the v-neck of his scrubs, said to me the morning after my second c-section. He was an OB-GYN who headed the group of my OB, but was not my Doctor. This charmer was previously unknown to me. He offered those words immediately after saying "I bet you feel like shit today" as I lay, in pain, with high blood sugar from surgery, and sleepy from Fentanyl. I hadn't uttered a word to him before he spoke. I nodded straight-faced at his first comment and I didn't respond at all to the "diabetes" comment. My limited response was partly from being caught off guard by his lack of professionalism (euphemism), my physical state, and the perpetual sense that it is too much to explain how to treat my type 1 Diabetes...Right here. Right now. Again. After all I had just spent the last 8 months prepping for this hospital stay by plentifully providing thorough information about my type 1 diabetes, health, medications and specialists. My High Risk doctor, my regular OB and I visited and revisited the plan and I was reassured that staff communication would be consistent. I thought after the decent care and advocacy I had recieved (and lobbyed for during the entire pregnancy) from my high risk doctor in the PACU, that staff would be able to "help" with the "Diabetes part," and it would go smoothly this time. Not so fast. He left the room (thank goodness). 

The next day another OB from the group came in and said "wow your blood sugar is 100 before a meal...that's really high isn't it?" Albeit she was nice; it's shocking that she sincerely believed what she had said. I commented, with a smile, sensing her sincerity, "nope, that's just perfect." Nurses came in and out during the hospital stay, some interested, kind, compassionate and helpful, some disrespectful, small minded and disdainful-- I was both chided for not providing the information from every single finger stick I did, and brushed off when I calmly attempted to provide detailed information about my Diabetes self-management. "I only have orders to do a fingerstick for you every four hours, I'm not interested in yours," an RN said as she left my room in the half empty high risk Maternity unit. 

For the next 2 days my regular OB saw me, and my high risk doctor, who made sure to take thorough care of me. The last day though, an OB, who I had seen once before, came in and said, "Well your blood sugar is high because you are just eating whatever you want now." Her judgment was false, unfair and baseless. Typical. I didn't respond. I knew I was going home soon and had a new baby and recovery to think about. I would just manage the postpartum type 1 Diabetes instability myself which included 40-60 point drops in blood glucose every time I nursed. No worries, I would just refer to the photocopied sheet about "'Diabetes' and Breastfeeding" the NP-CDE gave me, without furthher explanation, 2.5 years before when I was confronted with the same problem with my son. Or maybe I should heed the advice of an RN-CDE who said "Turn down the pump until the lows stop" when I called for advice regarding the constant hypoglycemia I experience in early pregnancy. What could go wrong?

Rewind to my presurgical "testing" the day before surgery. With both c-sections this was done by an RN only. Everything was standardized and I recieved the same testing as someone with average health (a problem in and of itself). Nothing individualized...except...for... the release form. I was given paperwork that, if I wanted to have the necessary c-section tommorow, in that hospital, as a type 1 Diabetic, I would have to sign. The form explained, with a punitive air, that because I manage my diabetes at home, I would have to manage it inpatient as well. I would use my pump to deliver my own insulin and whatever happened would not be their responsibility. Typical. Their "rules" about blood glucose testing, so that I could properly inform my treatment decisions were inconsistent and limiting. My mind was flooded as I read the form. Recent Comments from my high risk doctor and others inundated my mind as I read the form thoroughly 2-3 times; "they won't let you have your own meter, but bring it anyway, don't tell anyone I said that, I'll get in trouble" "We have really great nurses, so just ask for one if you feel high or low, but I *have* had other type 1 patients tell me that the nurses don't come to help when they are called" "ADVOCATE FOR YOURSELF ***I*** find IT WORKS best when PATIENTS advocate for themselves in the hospital" "I know it's hard to give up control" "Take control of your care" "Call the nurses if you don't feel well...also, have back up insulin and medications with you, just in case" "We don't really have guidelines or protocols for Management of type 1 Diabetes with a C-section." I ammended and clarified sections of the form, and signed it. And, yes, all of those things in quotes were told to me, by my 'team' within the same facility during the month (alone) preceding my C-section with my daughter.

In that facility's eyes their "new" Schizophrenic approach to "Diabetes" had vastly improved care. In a sense their form and attitude toward the inpatient management of type 1 diabetes increased their power, but decreased their responsibility. The disconnect continues to boggle my mind, and based on my experiences, just in the past couple of months, is unchanged.

It's dangerous to dismiss these scenarios as just flawed bedside manner, typical release forms or "hospital protocol." As a Type 1 Diabetic I am considered "untouchable" to many healthcare professionals and systems. I have been told countless times by nurses, physicians and others, "You know way more about your pump than me...you know way more about 'Diabetes' than me." "I'll treat type 2, but I won't touch type 1," a respected, experienced RD-CDE said to me a few years ago, it wasn't the first or last time I have heard that. Countless times by those providing procedures like...surgery...and hospital care when I am not well. I've had to figure out how to adapt my own doses of insulin to scenarios when I am acutely under physical stress or illness. My insulin pump was even removed during my first C-section and given to my husband because it was "just easier" and "in the way." It's not fair. 

At about 36 weeks with my second child, she stopped moving for more than 6 hours. I went to the hospital and was monitored. They lost her heartbeat for a second. I had a blood sugar spike that lingered for part of that fetal monitoring. They didn't know what to do, they checked my glucose once or twice over the course of a night. There were several residents (who were actually super nice, this time...but that's not the point) standing looking at each other like I was a pariah. *I*monitored my own glucose. After giving them ample chance to respond with a plan,*I* looked at them and said "This is what we are going to do (in regards to the high blood sugar)...OK?" They nodded simultaneously at me and each other, some literally with jaws hanging down a bit. And I proceeded to monitor and treat myself. So great, yeah, what's the big deal then? I did it! I helped myself. It must have been empowering, right?! It's just that... I shouldn't have had to worry about it in that scenario. 

One of the most disempowering feelings is that I have no back up, despite my detailed preparations, and exhausting self advocacy.

I provided them (as I always do) with a written med sheet with all of my insulin pump rates, meds, some information about my individual case and specialist contacts...More information that they would usually have for an emergency case. Forget the stress of the experience of not knowing if your baby is in trouble...what if I am unconscious next time ?...or otherwise too sick to monitor and treat myself? 

The poor managment of Type 1 Diabetes, especially in the hospital, but outpatient as well is known to many patients and to some Clinicians. Those who are thoughtful about Type 1 will say, "the hospital is the worst place for someone with 'Diabetes,' they are better to manage themselves at home." While it's certainly true that a Type 1 is often better at their own Diabetes Daily Management, it should never be a harrowing experience to be in the hospital or seek acute care. It shouldn't be too much to expect baseline knowlege and basic "type 1" problem solving. It is a necessity, at times, to need the emergency room, extra outpatient care or time in the hospital. My competence (and, frankly, overachievement) with my insulin pump, dietary intake/knowlege, blood glucose meter and NOW (Thank God) amazing continuous glucose monitor should not absolve professionals of their responsibilty to take care of me, and others with type 1, individually and appropriately. 

I've noticed that, for me, although the relentless daily management causes stress, the most stress that I experience is not due to the disease itself; it's the faulty approach to care that I often experience. The decision to make an urgent outpatient appointment even causes me to weigh and measure the pros and cons, timing and course of whatever acute process is going on, so that I am not overlooked, and recieve appropriate treatment. This shouldn't be.  

I have wanted to help make positive change in approaches to patient care for some time, especially for those who have permanent, severe, chronic diseases. I have made some tiny, tiny bits of headway at times, and I've certainly been successful at gathering the support and understanding of some. Every negative experience, though, can be defeating and reinforces how small my voice is to the point where I keep "quiet" for a bit. I feel like I've tried everything, but I need to KEEP trying, no matter how slow...and unsteady. I hope it gets better. It's gotta get better. I hope I can help.

...consistent with Malignant Otitis Externa...

The familiar antiseptic smell hits me as I walk through the ER door. I look around for someone to check in with, squinting at times from the bright open space and the drowsy blur of high blood sugar. I finally catch the attention of someone at the reception desk. I stand for several minutes, leaning on the counter, without any response from them. They don't realize I am a patient with an emergency. "May I help you? Are you looking for someone?" they asked. My red backpack slung over my shoulder weighs heavily as I calmly wait. They don't notice I am short of breath, having walked myself to the ER from my apartment, sick, in pain and with high blood sugar. I am 29, but look 22, by many accounts, which undoubtedly contributes to their incredulity. 

Straining to hear with one ear, trying to talk without enough breath and with liquid gravel blocking my throat, I say softly, "I'm here to be seen." "You're...oh you're a patient...oh, ok, what's going on?" I continue, clearing my throat, and trying to subtly turn my head to hear as well as possible."I have a bad ear infection...I have been trying to get it treated for a few days and I'm taking antibiotics, but it's much worse." Knowing the pain scale... I offer, "My pain is an 8-9 out of 10," trying to concentrate as my forehead, ear and neck throb with heat. "I have type 1 Diabetes and I've only been able to eat about half a sandwich today. I took twice the insulin...My blood sugar has been high for hours, I'm in pain, I have ketones, I don't know if my eardrum's perforated...it's ringing and completely clogged." They register me and I enter a small triage room, a little dizzy from my ear filling and draining, knocked out from the pain, my throat burning with dehydration. Everything looked a little off balance and I was ushered, shakily, onto a stretcher. The nurse came in through a door behind me and moved around to talk to me, ask history and take a blood sample including a finger stick. I am comforted by the quick treatment and think I am going to go straight back to see a doctor. He tells me they would most likely start fluids and IV antibiotics. All the while I think this must be why the Emergency Room here is so highly rated.

I am sent back into the waiting room.

I wait, in pain, with my eyes closed and my ear ringing, leaking and excruciating. There is more triage in a cubicle like area that has windows with blinds. The second nurse is not so helpful. He takes vitals and a rushed history while typing disinterestedly, half listening because he had to. I summarize that I have type 1 Diabetes, High Blood sugar (the fingerstick ER did was 399) and had been seen twice already for an ear infection that's much worse. I try to get the words out while keeping myself from choking on the congestion draining into my throat and with almost no ability to hear out of my left side.

I am sent back into the waiting room. 

I sit near the cubicle triage area. I figure if my eardrum perforates or I collapse or something they would see it and help. Naive. They signed up to help sick people, right? I didn't sign up to be sick...surely they understood that, right? Naive. I sit holding myself up in the hard chair, partly by hugging my red backpack. In it are a few books that I fantasize I'll get to study while waiting in the ER. My eyes are closed for most of the wait, blocking out the extra stimulus of sight and light because the ear pain and clogging was almost too much to endure. My ear is the size of my head, pushing, pulling, vibrating inside of throbbing inside of trembling. Scratching and stabbing with dull, flat and muffled hearing except for the crystal clear sound of my own breathing, sniffling and crackling of fluid. Tears begin streaming down my face as I sit, still, and silent. I struggle to keep from moaning awkwardly, out loud, in pain. Not tears of emotion...tears of pure physical agony and exhaustion. 

I open my eyes for a second to look around. The emergency room is still not that full, it's not a level I trauma center, why is it taking so long? I see patients getting walked back who arrived after me. Tears keep streaming down my face and as I look around I inadvertently make eye contact with the rushed triage nurse. He has no patient in his "office" at the time. He looks away flustered and closes the blinds angrily. Crash. I guess he doesn't want to see me. 

I wait longer. Then, they take me back.

Climbing on to a stretcher, situated between two curtains, I try to navigate my shaky body to judge the angle of the head of the bed and it's width. "Can you pull up the railing," I said. Click. I lie back on the hard foam, no pillow, and close my eyes. A blur of staff come through to take my history. An IV is started after I point out spots on my arm that I know won't infiltrate. Piece of cake. Matt walks into the room, backpack slung over his shoulder. He had been studying for law school finals. A Resident arrives to check my ear. He stands at my left side, takes a gentle look and asks questions. Matt says "She can't hear you out of that side." The Dr moves to my other side and starts drawing a picture on a paper towel. He shows me and says loudly, pointing to a drawing of an open ear canal, "this is a normal ear canal." Then he points to his drawing of two converging lines and says "this is your ear canal...swollen completely shut." An Attending comes in to examine the ear and the tender tissue around it. "You need a CT scan, I think your ear infection has spread to your skull base...the entire left side of your face and head are swollen." I feel a little stunned but too sick to react. I just shake my head, in affirmation, and close my eyes. Another Resident comes in, after a while, to clean my ear. He emphatically describes all of the "purulent and awful, red, black, yellow..." debris he removes from my ear, and commenting how bad the infection is.

Now admitted, I get fluids and medications. I communicate to staff an insulin dosage that I have estimated, without assistance, and take a bolus through my pump. Although I have dangerous signs of acute Diabetes complications from the infection, the Diabetes takes a back burner for the entire hospitalization. Except for the hospital's inadequate "Diabetes protocol" I check my own fingersticks, figure out my own dosages and treat my own hypos. This ignorance and added burden frustrates me, from extremely late meal trays, to surly or no response regarding hypoglycemia. After all, I wouldn't be in this predicament if not for the Diabetes, but I need to just keep "one eye open" and pull myself through it. I've just got to figure it out, I think to myself, and get well enough to get back to my classes and life. My shoulders tense. 

My bed is ready. 

Staff helps me onto another stretcher, laying the cold IV bags next to me, bumping my bare shoulder. We roll down the hallway. I hate rolling through the hallway on a stretcher. It's bright, cold, I look and feel awful, strangers and staff look. There is a breeze from the motion. I shift my eyes downward to check whether I am covered. Ok, I have a blanket over my haphazard gown now. The wheels on the stretcher continue to screech and hum. We get to my room; my bed is next to the door. I have a roomate who is snoring. It's about midnight. I explain that I haven't eaten, and a tech brings me a turkey sandwich, packaged shortbread cookies and an 8oz diet gingerale from the unit fridge. I eat voraciously, salty, sweet and artificially refreshing. At least I have a pillow now, and it's dark. Sleep.

Sleep. Wake up to nurses. Sleep. Wake up to pain. Sleep. Wake up to roomate. Sleep. Wake up to bright lights abruptly turned around me. Deep breath. I guess it's morning. I yawn and squint my eyes. The whole "crew" was standing around me, eager to see what was probably the youngest malignant OE they had ever seen. Several ask questions and histories. Some look at the ear and then they leave. Sleep. 

A few bites of lukewarm oatmeal and tea for breakfast. In walks a senior medical student. He acts as a Liason between me and staff. I am thankful for his help and communication efforts. He leaves. The ENT who was in morning rounds walks in, examines the ear and cleans it again. He says a bunch of stuff. I mention that my blood sugar is still h...He cuts me off and says "Well, that's because you're in the hospital..." He leaves. 

It's after lunch and I notice how grungy I feel and remember that I had not been given a new gown or any toiletries. I have to go to the bathroom. I sit in bed for quite a while contemplating using the room's bathroom. I finally get up strength and am motivated by the indignity of having to use a bedpan and wobble over to the bathroom. I look around and notice that my poor roomate had left bodily fluids around the bathroom, including a stool sample. My heart sinks and I peek out of my room to get the attention of a nurse. They say I can use the staff bathroom.   I do and return to bed, still grungy and waiting for the requested help with a new gown etc. I wait.

It's evening and the nurse comes in to tell me that they are moving me to another room. I go. Another night of sleep and interruptions. My pain is a 6/10. I wake up in the morning to a similar scene. After lunch I remember I am still in the same gown, and without toiletries. I had mentioned it the nurses several times. My friend the med student walks in and I let him know. He says he will get a PCA to help. Oh good, I thought to myself, as a PCA walks in... I perk up and start to ask her for help...She keeps walking past me to go to my roomate. As she leaves I catch her attention and tell her it's been two days since I've changed. She keeps walking toward the door and says "Sorry, you're not my patient." Later someone finally did help.

My med student friend comes back late in the afternoon and explains that I would be getting a PICC that evening so I could be dischared on IV antibiotics...hopefully the next day. My favorite. Knowing it was fruitless, I tried to talk him out of it and asked him to find out what alternatives there were. He made a valiant effort. 

In rolls a screechy cart being pushed by a masked IV nurse. She was confident, and had strong looking arms. I tell her that PICC lines aren't my favorite. She explains the procedure and proceeds to double numb my arm around the site and inserts the line without incident. Why didn't they double numb the site the other times? I thought to myself. Piece of cake. 

I start to consistently get my appetite back that evening. I sleep a little more comfortably except for some swelling with my PICC. My pain is a 4/10. I spend most of the next day in the hospital and get disharged some time after dinner. Matt arrives to bring me home and I begin to fantasize excitedly about the prospect of taking a shower and make sure I have the supplies I need to wrap the PICC. This trip to the hospital is a wrap. 

I return to class a few days later and even hang a bag of Meropenem in my VW GTI before a Microbiology lab (I actually have a picture of this somewhere). I don't want to be late so I try to squeeze the bag a little so it would go in faster...I rock that lab...and the whole class. Afterall...I have an increased depth of perspective on the effects of infectious disease. 

Hypos...?

"Ehh, Hypos?"asked, in a thick Israeli accent, by the doctor who takes care of my Diabetes. The question is to inquire about hypoglycemic episodes (low blood sugar). The answer, unfailingly, is "Yes." Not only a couple of episodes in the past few months...but, often, a few a day. No big deal, right...just eat something, have some juice, right? Well, in my experience, although some healthcare professionals and most lay people view low blood sugar as an occasional "something to take care of." It's often an actual medical emergency and, even when treated diligently, can affect the way you feel, not only during the episode, but for hours. It can also contribute to blood sugar swings and rebound highs. So if you have 2 or 3 or more a day, then "poof" there goes the day.

I've been laughed at by a nurse, while NPO (unable to eat), in the hospital when I tried to calmly explain how fast my blood sugar can drop and that we needed a plan (my blood sugar was already in the 60's). I have learned to hoard juice from meal trays in the drawer next to my hospital bed because, often, no one responds to the call bell in time... or at all (even though I never ring the bell for anything frivolous). My personal favorite is when a PCA is sent in by a nurse with a sugar-free "gelatin" or drink. When I explain that I have low blood sugar I am unfailingly scolded and told "you can't eat sugar, you have Diabetes"...Thanks...now you can get back the guy in bed 3 who is in urgent need of more salt packets.

While pregnant, I've been told by a Nurse Practitioner-Certified Diabetes Educator (CDE) that I needed a "Cognitive Reframe" if I inadvertently had too much carbohydrate to treat the constant 30s I was waking up to in the middle of the night. The dazzling ineptitude of that one still makes Matt and me laugh. If he hears me treating a low at 3am he'll wake up and say "are you ok," and I'll sometimes respond "yep, just need a reframe." If that lady only knew I had trained and worked as a cognitive behavioral therapist...I never mentioned it to her. There was that time when two doctors (one of whom touted a focus in "Diabetes") stood next to my bed while I, coincidentally, had a glucose in the 40's and they said to each other in amazement "wow that's low." With looks of concern they paused at my bedside. I calmly told them I needed someone to get me some juice. There are so many stories like these, but no room to write them all here.

My first real hypo outside of the hospital was bad. It was a couple of weeks after I was discharged and we were back in Pittsburgh. We had just eaten lunch. I took insulin after ordering my meal as I was instructed to...roughly 15-20 minutes before eating. I got my meal and ate. I shook visibly and sweated through my clothes as we walked to the parking lot and continued to shake and sweat after gobbling, and gagging on chalky glucose tablets. I felt cold from the sweat and my tongue, lips and cheeks were numb for quite some time after. My mouth tasted of metal, which I found out years later was probably Epinephrine and maybe some ketones. 

A blood sugar of 49 is low and can be dangerous especially for someone taking insulin, but I no longer feel those obvious symptoms at 49. 60-45, I sometimes feel hunger, butterflies in my stomach and start to lose concentration. If my husband is with me, he notices the difference before me. At 44 I start feeling jittery and shaky and fumble for sugar or food and I drop things. At 35 I sweat and feel lightheaded. 25 is all of the above with a racing heart, cold sweat through my clothes, and the metallic smell lingers in my pores. At 25 (thankfully, I usually avoid these) and lower I usually need a shower and a nap after it's treated. Think "Shelby from Steel Magnolias"except without the Southern accents and dramatic crying... Wait, you didn't know? yes, Shelby was a Type 1, when treatment wasn't as good, I bet she was on NPH insulin...or NPH and Regular....I digress!Treatment gets more difficult the lower the number is and the longer it lasts.

Unfortunately, no matter how much my insulin is adjusted, how diligently I check my blood sugars, or use a continuous glucose monitor with an alarm, I have hypos. It can be very frustrating. My sleep is often affected. Normal activities are constantly interrupted. Running to the supermarket. Going for a walk. Going to a preschool open house (and stealthily eating loose glucose tablets along with some pocket lint). Taking the railroad. Walking in Manhattan. Laundry. Cooking. Going to a kid's birthday party while trying to talk to other moms, watch my kid and subtly treat (multiple times) the 45 that has lasted the better part of an hour. I could write a whole entry about the many adaptions I made when I was working. I've had lows while running to doctors appointments...

Once my glucose was 33 at a Opthalmology check up. I was pregnant with my second child. I regularly experienced multiple hypos a day, often sustained, during my pregnancies. I was sitting in the waiting room  with my two year old waiting for the eye dilation solution to kick in. I didn't feel the low yet. Just a little tired. Just a little nauseous and shaky. I just checked my blood sugar when I started the 5 minute drive to the appointment, it was in the 90s. I sat in the chair in the exam room and it hit me like a truck. I winced and pulled away as the Doctor neared my eyes. I froze a little. I said awkwardly, "I need to check my blood sugar." Sure enough it was 33. I calmly told him I had glucose tablets and started to eat them. He asked if I needed something else and, although I said "no," he came back with a small (lime) lollypop for me. I politely gave it to my son who was applying stickers to the walls at this point. The Ophthalmologist was kind to help, as is his usual personality, and it would have been unfair for me to expect him to know how to treat a serious Hypoglycemia. He gave me extra time with the appointment and checked up on me. He admittedly had never once seen a hypo this low (and it sounded like he had never seen one at all). The blood sugar swings I had often told him about were now illustrated and it seemed to, thankfully, make an impression. 

Long story short...Hypos are frustrating. Blood sugar swings make me feel sick every day and cause me to work extremely hard to function adequately. Thankfully, though, technology is improving rapidly. I think it will get better soon. I've been cautioned not to be naive about the swings "going away," but I remain faithful that they will be more manageable. There are some scientists out there who care, and have direct personal experience with Type 1 Diabetes which must drive them to make sure it gets better. It's gotta get better.