11.14.13

41,975 blood tests
6,570 injections
1,551 pump site changes
92 endocrinologist appointments
26 thorough eye exams
23 years of living with type 1 diabetes

Today is world diabetes day.  I wouldn't be who I am without diabetes, and for that I am thankful.  But I wouldn't wish it on anyone.   With the newest research coming out, I'm finally letting myself believe that there may be a cure in my lifetime.  I'm excited to see how this research evolves.

Passing stones

I'm pretty sure I had my first kidney stone this weekend, which also means this weekend went nothing like it was planned.  The presentation was classic: sudden onset severe flank pain radiating into my pelvis, nausea without vomiting, clamminess without a fever, and urinary urgency.  Of course, the pain started on my way home from work on Friday night, right after all the doctors' offices and urgent care centers had closed, and right before the start of shabbat. 

 I went through the differential: kidney stones, pyelo, appendicitis, hemorrhagic ovarian cysts, ovarian torsion.. but was very aware that the pain was primarily flank pain.  I called my med school roommate to calm me down, talk through the differential, and come up with a plan.  800mg ibuprofen, hydrate as much as possible, use a heating pad, reevaluate in a few hours.  The pain escalated but the heating pad made it bearable.  Our shabbat dinner guests arrived.  One guest encouraged me to call my PCP to talk to the on-call doc.  It turns out my own doc was on-call, strongly felt that I was passing a stone, and advised I go to the ER for IV fluids, stronger pain meds, and a confirmatory CT scan. 

A friend drove me to the ER.  We waited an hour, in which the waiting room became increasingly filled with people who appeared to have all types of communicable germs.  I couldn't sit comfortably or stand in one place and so I paced in the corner.  I hadn't yet even been triaged.  I wished I wasn't such an honest person, knowing that had I reported my chief complaint as chest pain + SOB, I would have been seen immediately.  I freaked myself out about a CT, about exposing my ovaries to needless radiation.  And so after an hour I checked myself out of the que and we left, knowing that either it was a stone and would declare itself or something would get significantly worse and I would be back.

The next 24 hours were a slow mix of adjusting the heat pad, re-dosing on NSAIDs, drinking as much as I possibly could, peeing, sleeping, and trying to read a book.  Not how I had planned to spend shabbat.  My urine turned cloudy a few hours after the pain began- furthering my suspicious that it was a kidney stone.  And then, sometime last night, the pain stopped.  It has left my body sore and exhausted, wondering if maybe I made it all up?  That's the downside of not having a confirmatory scan or seeing a physical stone pass... now I always get to wonder if it was a stone or not.  Really, could I have imagined all of the last 36 hours?  And it is a pretty compelling story indeed...  But, the true question is, would I believe a patient that came in and told me all of this? 

7.7!

While not the best number ever, and not even the goal, I'm proud to announce that my A1C last week was 7.7!  This is 0.7 lower than it was at my last visit.  In fact, lower than it has been since I started medical school!  It's been a long time since I've had my A1C in the 7s...

Controlling my diabetes in medical school has been challenging at best.  I don't test my blood sugar nearly enough.  I keep myself slightly high on the wards out of fear for hypoglycemic episodes while dealing with patients or in surgery, or just fear of taking out my pump to bolus in front of residents and attendings.  I don't change my pump often enough and therefore have a higher than average rate of kinked tubes, pulled out sites from tape giving up, and ketonic episodes. I use expired insulin because I don't have time or energy to refill my prescription.  Stress alone bumps up my numbers because of excess cortisol release.  Basically, I am so busy trying to learn to take care of others' health that I neglect my own. 

But, oh, at last!  The golden 7.0 A1C is in sight!  The even more allusive 6.0 [in order to contemplate pregnancy] is right beyond it.*  Between ordering a shinny new continuous glucose monitor (that I hopefully wont be allergic to), a new bicycle to exercise on, and adopting a low-er carb diet... I guess we'll just have to see what my next  A1C has to say for itself.

*Not that I intend to get pregnant right now, or anytime in the near future. But it might be on my 5-10 year plan... It better be, after all, I'm already 28 and well aware of the risks involved with increasing egg age.

Surprising twist

In a surprising turn of events, all of my allergy skin testing yesterday was negative. I was negative for all 69 triggers that they tested. The doctor was baffled and I was [pleasantly] shocked. My clinical picture very much pointed towards allergies being the culprit for a lot of my generalized 'yuck'. That said, after some pulmonary function tests and a significant improvement post administration of albuterol, I was given the [equally] surprising diagnosis of "asthma / an asthma spectrum breathing issue" and a 1 months sample of asthma management drugs to see if there is any improvement.

The doctor also discussed emerging research supporting local IgE response in both the nasal tract and gastric mucosa- which would mean that one is actually allergic to something but that there is no way to easily test for it as there will be no response to skin or blood testing. Local IgE?! This challenges everything I learned in immunology... given immunology was the pre-clinical class I struggked most with.  However, reviewing some scholarly articles on the subject today proves him right, that this is an emerging belief in the allergy and immunology world. They have no way to test for these triggers and so I may never know if this is in fact what is going on with me. Maybe I actually am allergic to something(s) (which I suspect to include dust and mold) or maybe I'm just a paranoid hypochondriac? 

Being an example

Today was consumed by neurology orientation.  I don't know how I used to sit through entire days of lectures for two whole years of med school (and all the years before that)!  But the endless day of lectures isn't the point. 

The point: don't volunteer to be an example.  The clerkship director asked for a volunteer to demonstrate a proper cranial nerve exam on.  No one was volunteering and so after what felt like hours, I finally raised my hand and took the seat front and center of all my peers.  In the process of doing a proper neuro exam on me she discovered that I likely have carpal tunnel syndrome to some extent or another.  Lovely.

I'm not surprised at all by her observation.  I've had off and on wrist pain for a long time thought it is usually when I've been over using them: knitting constantly, signing (ASL), and typing at odd angles such as when I worked as medical assistant.  Plus, she only found a defect in my left wrist (my non-dominant hand) and it was a really cursory haphazard exam. 

BUT carpal tunnel syndrome is one of my biggest fears as I prepare for a future in OB.  [Along with my fears of loosing my eye sight or limbs to years of chronic type I diabetes.]  So many older doctors I know have given up delivering babies or preforming intricate surgeries due to wrist problems.  Having a fear pointed out in front of a room full of classmates doesn't do much for one's self esteem.

Celiac

I was diagnosed with celiac disease in December 2005, over winter break of my senior year of college. My diagnosis was somewhat happen chance. Sure, I was extremely sick, but in totally non-traditional celiac diagnosis type of ways. I'll spare you the exact details. My home doctor laughed at the suggestion that I should be tested for it, but the physician at student health services who had no other idea what was going on, figured it was worth tacking on to the lab work. I came back positive to all 4 antibodies. I was then shuffled off to see a GI doc who confirmed my diagnosis and sent me on my merry [gluten free] way.

Working on the healthcare team at a diabetes camp, I had learned a lot about celiac disease in the summers prior to diagnosis. I knew I was at a high risk due to my strong family history of autoimmune diseases and my personal history of type 1 diabetes. I had suspected that it might be the culprit to my gradual onset of chronic woes and I was the one who suggested the test to the student health doc. I had done my research and was prepared for the results when I came back positive. I wont deny that going gluten free sucked, but emotionally, I rebounded to the news pretty quickly and I was soooooo ready to start feeling better.

When I was diagnosed, it was suggested that my immediate family members get tested. None of them did. Today, 5 1/2 years later, my mom saw a new osteoporosis specialist who screens for anti-gliadin antibodies as part of his comprehensive panel. Turns out that she has celiac disease too. She's 66 years old and totally asymptomatic. Antibodies don't lie. Okay, so sometimes antibodies are confused, but in her case it is a true positive diagnosis.

Watching her come to terms with the reality that she now needs to drastically change her diet is difficult. While she is willing to, she lacks the physical motivation of illness that I had. I imagine that it is also much harder to change your habits at 66 than it was at 21.

To my dismay, my endocrinologist does not screen all of his type 1 diabetic patients for celiac. So every time I have seen him since my diagnosis, I have brought in scholarly literature about the need to annually screen patients with related autoimmune disorders. He argues that it will make a difference in seemingly asymptomatic patients; that they will be unwilling to change their diets for a disease that is not causing acute distress. In lieu of today's events I both understand not wanting to turn someone's life upside down and also the need screen for conditions the patient is at high risk for. Had this doctor not screened, my mom would get to continue to naively live her life the way that she's accustomed, and at 66, who knows if untreated celiac would have left her with any serious term sequela. At the same time, I believe that it is out obligation as physicians/future physicians to supply our patients with all of the information regarding their health despite our personal belief about what they'll do with the knowledge. Example: we need to educate our hypertensive patients on smoking cessation and dietary changes, and the impact not making these changes might have, even if we know that they're going to simply walk out the door with a cigarette still in hand.

Am I just being naive though? Is my endocrinologist right in that we shouldn't screen for problems that aren't yet screaming to be found? Would my mom be better off not knowing that she has celiac disease?

Reusing needles

Growing up with [type 1] diabetes there were a few non-talked about norms: taking insulin shots through bathing suits, telling my parents my blood sugar was "normal" when I actually forgot to check, sneaking Halloween candy from the pile piece by piece, and pushing off changing pump sites until I ran out of insulin. However, there were other big no-nos that I never messed with out of fearing serious complications. One of these was reusing sterile disposable insulin syringes. My doctors had taught me that I should never reuse them as the needle blunts, the plastic breaks down, and that injecting myself and then reintroducing the needle into the sterile insulin bottle allows for the propagation of bacteria. I knew of people who reused needles on insulin pens, but no one who did so with disposable syringes.

Imagine my shock last week when we sent a newly diagnosed [type 2 diabetes] patient home with a prescription for a 1 month supply of insulin and only 6 needles. I looked at my attending like he was crazy! He looked back at me like I was a naive medical student who had never met a diabetic before. When I voiced my concerns, he sent me to google. I was shocked to find out that there is actually little risk in reusing your own disposable insulin syringes. There is this article in The Lancet in 1983, and this article was published in 1989 in General Internal Medicine. Even the Pediatric Advisory Network came out with tips for more safely practicing syringe reuse in 2010. Sure, there are some naysayers too. Take for example BD's statement on this issue. BD happens to be on the big syringe manufactures so it is really shocking that they don't encourage the practice (sarcasm).

This has gotten me thinking about what other practices exist in chronic illness communities to lower costs and reduce medical waste? Where else is there significant discourse between the scientific literature and the company/suppliers stance? How else can I better advocate for my future patients instead of simply support the industry?

health-privilege

Yesterday a few of my friends had the following posts on their facebook wall which got me thinking:

"I am asking if everyone could please put this as your status for one hour if you or someone you love has diabetes. I know my family will, my prayer is that in 2011 a cure will be found. Will you post it? Just for one hour. Do it for all of us in memory of too many to mention and in honor of all fighting it! I hope to see this on your status today."

Then, a pretty frustrating conversation with a classmate about the way people handle chronic conditions made me realize how little the medical profession actually KNOWS about living with chronic conditions. Especially invisible chronic conditions. But in all fairness, it is impossible to explain to someone what living with such a condition does to you. Sure, the disease/condition doesn't define you; but it is also naive to think that it isn't a huge part of someones identity (even if you are someone who pretends this to not be the case). I don't know what it means to be a naive 20-something with health-privilege just as they don't know my perspective; but they sure as hell shouldn't judge me or project their expectations for the appropriate way to handle it.

My diabetes and celiac define me as much as being Jewish and queer do. They are just as much my identity as where I am from, my family structure, or the time I wandered away with my my brother at age 4. My morning routine: I wake up, shower, brush my teeth, check my blood sugar, pack lunch, take insulin, eat breakfast. When I eat out? I don't eat un-kosher food nor do I eat gluten. Sure, I could live my life as if I didn't have diseases, but I'm pretty sure that I wouldn't be as healthy as I currently am or be able to invest all of this time and energy into becoming a doctor. That wouldn't be good for anyone involved...

I'm sorry if the way that I handle my life, along with all of my uniqueness, upsets you. I'm sorry if my being open about my chronic, yet invisible, conditions offends you. I'm sorry if you think I'd be better off not making them part of my identity. However, I personally think you'd be better off letting me live my life the best way I know how.

psuedo-science: update

My A1C came down 0.4 points from 3 weeks of wearing my CGM sensor. That is a pretty convincing argument to wear the sensor more often. Especially as life gets a whole lot crazier with the start of clinical rotations in the near(ish) future.

Now if only I could figure out how to not have an allergic reaction from the tape used to hold the sensor on...

"Can I Physically Do This?"

I am spending my summer doing research on adolescents with lifelong, and function limiting, chronic illness. Spending hours pouring over qualitative data on how teens identify with their illness has reminded me of my relationship with diabetes as I transitioned through adolescents. It also reminded me of the summers I worked at diabetes camp, and my tween and teenage campers who I desperately wanted to grab by the shoulders, look in the eye, and promise that it would get better in a way that they could hear.

Today, in hopes of nurturing my professional development, my PI (principle investigator) spoke wise words about my academic future: "You are in a tunnel. There is an end. But at this point you need to be careful that the light you see isn't another train coming at you." These same words so adequately describe the double edged sword of being a teenager and having a chronic illness.

Even now, a few years removed from the turmoil of teenage insecurity, I still struggle with acceptance of future: as a physician, as an adult giving back to society, as a sister, daughter, wife (maybe?), mother (hopefully), AND as a type 1 diabetic. Below is a "fear essay" on the subject that I had to write for our humanism in medicine class this past fall:

Can I Physically Do This?
My biggest fear about becoming a physician is actually less about the process of becoming one and more about my future career in medicine. I am afraid of not being able to physically handle the life-style associated with the practice of medicine. I am also afraid that the stress associated with a life in medicine will have a negative influence on my health. I am afraid of there being truth in all of the nay saying I have heard over the past 19 (plus) years of living with type 1 diabetes.
At six years old I was diagnosed with diabetes after an abnormal result was found on a routine blood glucose test during my annual physical. My blood sugar was 157 and I was completely asymptomatic. Three days later my pediatrician performed a very unscientific glucose tolerance test (checked my blood sugar, sent me out to eat a sugary breakfast, had me come back to check my blood sugar again). This led to me being ushered off to the pediatric endocrinology unit at the local teaching hospital. The events of that day are my first tangible and complete memory.
Growing up with a chronic illness, especially one that is surrounded by a huge amount of misinformation, has been hugely influential in the development of my personality. I believe that my experience as a “diseased” person in society is what led me to major in Medical Anthropology, a background that will be hugely beneficial to my career in medicine. With no one in my family in the medical field, I strongly believe it is also what inspired me to seek a career practicing medicine. This desire was strengthened when I was diagnosed with Celiac disease after many years of seemingly unrelated symptoms. Diabetes has given me a (sometimes overzealous) drive to achieve everything I possibly can and not take a single day for granted.
However, there have been tremendous physical and emotional obstacles to surmount. One of the greatest challenges for me has been overcoming the emotional burden of the “scare tactics” used on me as a child. I grew up in the age of “if you eat that your arm will be amputated”, “if you don’t check your sugars more often, you’ll loose your eye sight”, and “high blood sugars will kill you”. I was taught to weigh my food, to micromanage my sugars, to be meticulous about taking insulin, and to use food exchanges as a way of cheating death. My parents, doing the best they knew how, had the attitude of “everyone has their problems and so at least you know what yours is” which left little room for me to ever be upset or frustrated at the disease that shared my childhood.
I made the decision to pursue a career in medicine a little later then most of my peers, as I had to first determine that diabetes was not going to get in my way. While I rationally know that it wont, and know that it never has before, I am still fearful that it will. There are many events that have happened recently to reaffirm my fear of a future as a diabetic in medicine. Such as my endocrinologist advising me to keep my disease hidden in the application process and in medical school rotations, as according to him, “old world surgeon types will judge you and think you are incapable”. Or having to fight to be able to take my insulin pump and blood glucose meter into the testing room with me during the MCATs. Or that countless numbers of people have given me unsolicited advice about how as a diabetic I should avoid high stress lifestyles in order to avoid complications.
I find myself wondering how I will manage to keep my blood sugars stable during the unpredictable pace of 3rd and 4th year rotations. How will I carry my pump, multiple pagers, and a smart phone on scrub bottoms without them falling down? (I have mastered the pump and 1 pager or radio already, but not multiple.) I worry that I wont be able to fit exercising, sleep, and cooking healthy meals into the packed life style ahead of me. I am concerned that high levels of stress combined with little sleep will lead to uncontrolled blood sugars. And I worry about what will happen if I have a sudden low blood sugar, or accidentally pull out my pump site, while working a code or during surgery? Will diabetes hold me back from a specialty I really want to pursue?
I also find myself worried about diabetic complications, and irreversible past damage I may have already done to my body. If I loose a limb as a result of this disease, will that be the end of my career? And if so, why am I putting all of this time into trying to be a doctor in the first place? Should I be taking advantage of the time I have with all my appendages somewhere else? Or what happens if I go blind?
I also worry about how my experiences with a chronic disease will influence my ability to doctor, and how I view my patients. I already know that I have an unfair frustration towards type II diabetes and diabetics due to the assumptions made about me from the mention of “diabetes”. I need to quickly get over this bias, as I will probably have many type II diabetic patients regardless of my specialty choice. Will I be unsympathetic or judging of non-compliant patients? I really hope not.
I know that I am not the first diabetic to pursue a career in medicine and I am sure I will not be the last. I also know that I have had the blessing to grow up surrounded by new technology and that things like constant glucose monitoring systems will significantly ease the burden of managing diabetes in a fast paced life style. I also realize that it is okay for me to have these fears but I need to ensure that the fear does not become debilitating. Hopefully my diabetes will aid me in my career as the best physician I can possibly be instead of holding me back.