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.
