Tuesday, January 18, 2011

Diagnosis 1600.1: Fish Out of Water

Exactly three years ago today, I had an experience I can only call life-changing. Though, at times, it's led me down a dark and difficult path, it has finally brought me to where I am now - a place of overwhelming gratitude, healing, community and love.

Following is my description of the events, from an online letter I originally composed on Monday, January 28, 2008.
Suddenly Diabetic.


I'm still picking away the medical tape. 

I keep finding remnants of it in deliberately spaced vital intervals all over my body, and at times, in intimate places, which makes me tearfully shudder, "Where was I?"

But it's my arms that really tell the story of my visit to the ER a week ago Friday. The bruises on my wrists and inner elbows where ER and ICU nurses pumped countless fluids and IVs and drew blood - sometimes with so little success they had to stick me several times or go almost an inch deep - have now turned shades of rancid brown and green. Apparently, I am a Type 1 Diabetic... and I nearly died finding out about it.

It began with a visit to the doctor just before Christmas. I had an ear infection and a perversely swollen ear lobe to show for it. It was painful and distracting, and though he could not guess any more than I as to its cause, the doctor at least had a proposed solution for it: a steroid shot (Dexamethasone) and ten days of antibiotics (Omnicef). The antibiotics would work on the infection, he said, while the steroid would help reduce the inflammation.

I didn't know to expect one (no one had warned me), but my reaction to the steroid was profound. Within what seemed like just a couple hours, I became consumed by thirst and began drinking water like a fish. Before too long, if I went more than a few minutes without liquid to drink, my mouth became parched and sticky and dry, as if I'd just been sucking on a 1/2 cup of peanut butter. 

While it made sense to me that all that drinking would naturally lead to excessive urination too, my symptoms soon multiplied beyond just that. I also suffered extreme fatigue, dizziness, blurred vision and observable weight loss. I had never been one to whine or complain about sickness, and I felt the same way throughout all this. I figured my body would be back to normal in no time.

After a week or so, however, I became curious enough at least to browse the internet for answers. What I learned satisfied me for the moment. All my symptoms were on the list of general side effects for the Dexamethasone steroid. So that solved it then. I was having the expected reaction, and it would pass quickly enough. So I waited to act, while my symptoms worsened. 

I continued drinking and peeing excessively. I had to excuse myself to the rest room maybe a couple times per hour. I ate normally, but continued to lose weight. Three weeks earlier, I had weighed 127 pounds. I now weighed 110 pounds. The weight, and my now loose and baggy clothes, appeared to be falling right off me.

Two days before my emergency trip to the ER, I was so sleepy I couldn't keep my eyes open at work. I was dizzily stumbling through hallways, clutching no fewer than 4 to 5 drinks in my arms at all times - water, juice, milk, soda, smoothies, Gatorade - anything and everything I could find. I came home that night, and while the rest of the country was sleeping, I drank a gallon of milk, half a gallon of orange juice and several large glasses of water - all with very little sleep of my own, thanks to my numerous restroom trips.

The next morning, I felt too ill to work and called in sick. While speaking with my boss, I told her of my persistent symptoms. (I had been working out of a different location recently; so she hadn't witnessed my most current behaviors firsthand.) She became concerned and encouraged me not simply to stay home and rest, but to make sure I went to the doctor. I assured her I was fine and that my reaction was normal for having just had a steroid shot. She corrected me. It may be normal, she said, if I were continuing to receive steroid shots, but my injection had come and gone weeks ago. She insisted something else must be really wrong.

I rang the doctor and scheduled an appointment. Then, I picked up a juicy tomato and ate it like an apple. Two hours later, I vomited the tomato. I had asked a friend to pick me up to take me to the doctor because I was too dizzy to ride my scooter safely. (It was my only transportation at the time.) Seeing the doctor wasn't terribly helpful though. I saw the same doctor I had seen for my ear infection, and these were my only two visits to him. I hadn't been in California long enough yet to have set up shop with any doc.

After sitting in the waiting room for what seemed an interminable amount of time, and having to lean on my friend just to steady myself and stay upright, I finally was taken to a room. Then I waited some more. I couldn't sit still. I needed to pee. I needed something to drink. I wandered down the hall to the restroom. In the same area, I noticed what appeared to be some kind of employee break area, where I explained to one of the office workers that I was parched and asked if I could please have something to drink. They let me take a Coke. Then I returned to my room to await the doctor. 

When he finally arrived, I gave him my list of symptoms. In response, he mumbled something about anorexia, couldn't explain the vomiting, and told me to eat anything I wanted to gain some weight back. “It’s your time,” he said. “Live it up… Go have a banana split!" In spite of his lack of investigation or answers, he also asked me to return for a follow-up appointment the next day. I wasn't sure what good it would do, but I made the appointment.

I left his office feeling very frustrated. Clearly, he didn't have any answers. Clearly, he didn't know what has happening with me if the word "anorexia" crossed his lips. And clearly, he didn't understand my condition if he seemed to think I was going to keep down any food at this point. I knew I needed to eat, but that I would have to tread cautiously. I did manage to make a lunch of some fruit and chicken broth, but soon found myself on the floor bent over the toilet again. Later, I made a smoothie which I nursed through the night along with my gallon of water and half gallon of orange juice. Truly, I was in a terrible way. And I was getting even worse, without fully comprehending the severity of my situation.

Between Thursday and Friday, my body crashed. I don't really know what happened during the night, but I saw when I woke early Friday morning that I hadn't changed my clothes or showered. It was just barely light outside, and I still felt awful. I tried standing, but I was too dizzy to go anywhere. I called my friend at that obscenely early hour to tell him I'd probably need help just getting out of bed. I felt ridiculous and desperate, but he had agreed to take me to my follow-up appointment later that morning. 

We never made it to that appointment.

After my phone call to my friend, I remember very little... I tried to wash my face... I went to lie down... I went to my computer... Then back to bed... I tried to go online to move some money in my bank accounts, but I couldn't even manage to type the very simple web address... I tried again and again to type it... I must have tried 10 times, before finally giving up and lying back down. I heard my roommate in the next room... She was on the phone with a client... I crawled to the bathroom... The world seemed unsteady... I crawled to the living room door to unlock it for my friend... I stretched out on the sofa... I closed my eyes...

Some time had passed - and I had no idea how much - before my friend arrived. I heard the door open, and I started awake. I saw a flash of him inside my apartment, but my eyes didn't stay open for long. I moved to get myself up, but all I could manage was what felt like an awkward arm flailing. I wasn’t going anywhere on my own. My mind was drifting far, far away, but I still could hear pieces of urgent conversation between my friend and my roommate... They sounded upset... Someone mentioned the ER...

My friend told me later that at that moment, lying there helpless on the sofa, I looked just like a dead cat, with my eyes rolled back into my head.

In what I knew was no time at all, I was in his arms outside my apartment, and he was carrying me down the stairs. "Try, try to hold on," he told me. It was difficult to maintain any kind of grip... If I could hold on to anything, I wanted to hold on to him... But I couldn't... I tried, but... I couldn't... I...

I caught another flash - the inside of his car - and for some reason, I put my feet up on the dash. After that, my eyes must have closed for a long while, as he sped us to the hospital. Once there, my eyes flashed open one last time, just long enough for me to see that we were parked and my door was open. I heard more urgent voices around me, but I was utterly helpless. My body was immobile. It dangled wherever it wanted. My ears told my fading consciousness that my friend was shouting to someone somewhere about a wheelchair... And then, nothing.

What happened in the ER is something of which I have almost no memory at all. I'm told I was quite the project, with all kinds of nurses working on me and all kinds of doctors and surgeons buzzing about, poking and prodding, looking for things that hurt. I was asked a plethora of questions which I’m told I was unable to answer coherently. I vaguely remember someone shoving a form under a pen in my hand and calling it the insurance authorization they needed before they could go to work. I also recall feeling them insert the catheter... That was uniquely memorable.

According to my friend, most of what I mumbled for the next several hours was some kind of plea for water, but no one would oblige; nor would they allow my friend to give me water - not in my current condition, they told him.

The reason for all this fuss came down to just a few simple numbers: A normal blood sugar is between 70 and 110, a 300-400 or higher blood sugar can put a person into a diabetic coma, and the highest blood sugar this ER's staff had seen before me was between 700 and 800. My blood sugar was just shy of 1600. I've since been told by several people that this is the highest they've ever seen or heard of, and that anything higher isn't really conducive to Life. 

By all medical, historical accounts, I should be in a coma or dead.

Somehow, though, I survived. And my friend stuck with me the whole way, holding my hand and talking me through things I don't even remember. He spoke with doctors on my behalf and made calls to my parents, friends, and coworkers, to let them know what was happening. In brief moments of semi-consciousness, I assured nurses and doctors that they should keep him as informed as they would my family, in their out-of-state absence. In reality, I had no grasp on the situation at all. It would be a couple days still before I emerged with enough of my wits even to begin to understand the full impact of how serious all this was. For now, though, I had no idea what was happening. I just knew something was really wrong. But my friend was there, so I wasn’t worried. He took care of me. And he was brilliant.

The nurses and doctors worked on me all day, and by evening, after I'd begun to regain consciousness, they wheeled me down to the ICU. My friend told me that on the way there I received some crazy, stunned looks from people, as I was easily the only person under 50 making that particular journey. We couldn't help but suspect that, because I was younger, people probably just assumed my condition was related somehow to drug or alcohol abuse.

It wasn't until after I arrived in the ICU that the nurses let my friend give me some water. For some reason, they didn't want me actually drinking water yet. Instead, they handed my friend a kind of sponge on a stick, which he dipped in a shallow cup of water and then touched to my lips. I felt the water trickle over my dry, cracked lips and down my chin. I opened my mouth to let in some of the moisture. I felt the sponge return again, and it wasn't long before I took it from him and wet my own lips with it. When I did that, I suddenly became aware of just how dry they were. I kissed the sponge again, wiping away a thick crust that had formed over my lips during this radical dehydration. My friend then helped me apply some of the hospital's lip balm. He said later that this particular sequence of events felt like watching me come back to life. And truly, I think this was the moment I began very slowly to regain some awareness.

One of the first things I expressed a concern about - of all things - was the catheter. I knew it was there, but I couldn't feel it and wasn't sure whether or how to pee. I was at least aware of myself again enough to feel very nervous that I might somehow move the wrong way and wet the hospital bed. I asked the nurses about it several times, I guess, and their instructions were, when I needed to "go", to just "relax". I had my doubts, but relaxing seemed to work. The hospital fed me, watered me, and dripped me, and to thank them, I just laid there, recovering and urinating into a tube.

After 2 days in the ICU on a steady insulin drip, I was moved to a regular hospital room. My mom flew in from Oklahoma the next night - my last night before being discharged. She was a tremendous comfort and help to me all week. I'm especially grateful to her for carrying groceries, washing my dishes and generally being physically supportive, given the fact that my muscles were atrophied and weak from all that bed time. During her stay, she helped me feel loved and cared for, at a time I was literally terrified of falling asleep. As the post-traumatic stress began to set in, I was more and more convinced that, if I let myself fall asleep, I wouldn't wake up again.

In my time at the hospital, I had visits from all kinds of people - nurses, dieticians, my regular doctor (we'll call him "Dr. Banana Split"), an endocrinologist (or hormone doctor), and one of several ER doctors who'd worked on and remembered me. He happened to pass by my room on my last day there, recognized my name on the chart, and wanted to introduce himself. He called my numbers "impressive" and apologized "for everything we had to do to you in the ER."

But the endocrinologist was the man who recognized my condition as autoimmune diabetes. This was the man whose instruction all the nurses were following, whose instruction I'm now following, and whose assistant (a certified dietician and diabetes educator) is now thoroughly and militantly coaching me to learn to deal with the many overwhelming life changes I now face as a "new diabetic", including regular blood sugar monitoring, insulin injections before every meal and at bedtime, and all this, on top of my body's simply trying to recover from the trauma itself.

My heart beat still feels puny and uncertain. My breathing feels belabored. My emotions are high and low without warning. My muscles are weak and cramping, and my head aches... Ever so slowly, I can feel my strength returning, but what I feel more strongly is overwhelmed by all this. Like a fish out of water, I feel terrified of this new environment. I feel like I'm flapping around helplessly, trying to breathe an entirely foreign new reality. And, from what the doctors tell me, there's no going back into the water tank. They say I will always be diabetic.

What they mean is that I will always require synthetic insulin. They explained that I am Type 1 diabetic (also known as autoimmune or juvenile diabetes). Unlike the more common Type 2 diabetes in which the body produces some, but too little, insulin, my body produces no insulin at all. The way my endocrinologist explained it, insulin is a hormone produced by beta-cells in the pancreas which helps us to break down sugars in our blood, thereby allowing us to receive nutrition from the foods we eat. Insulin is essential to our survival. Type 1 diabetics must, therefore, manually self-administer synthetic insulin in order to stay alive. With all this talk of death versus life, my mind wanders to how I am at least encouraged that all kinds of thin, very active people - including top-ranking athletes - apparently also have Type 1.

While I remain alarmed that Dr. Banana Split seemed to be clueless as to identifying the nature of my condition (I've been told by several medical professionals since that I was a classic case of Type 1 diabetes), my endocrinologist has at least been able to articulate what he thinks happened. 

Despite my lack of any sort of family history of Type 1 diabetes, he believes I've always been a diabetic, but that until recently, my condition had been sitting in a kind of dormant state. He says certain things like steroids have a way of "uncovering" these types of illness. So even though I had taken, and continued to take, the same relative good care of my body as always, he says the shock of the steroid may have caused my body to halt its normal insulin production. As a result, I wasn't receiving any nourishment from foods I was eating; so my brain told my body to seek that nourishment elsewhere - in liquids. That, he says, explains my extraordinary thirst. But without insulin, not even the liquids were helping. I retained no nutrition, he says, and was essentially "peeing sugar". That means, for about a month, my body was basically starving and dehydrated.

But if the onset of my condition really was genetic and/or unavoidable, as my endocrinologist says, then I'm glad it happened this way. I'm glad it happened now. I've heard too many stories since about some people not finding out until their kidneys are failing and there's nothing to be done to save them. But I'm young, and if I continue to take care of myself - and I will - I'm told I'll have a mostly normal Life.

My mom said, before she left, that it would seem easy to feel my body has betrayed me. But I see things a bit differently. My body has been good to me in the past, and still is good to me, I'd say, if I can go into the ER with a blood sugar of 1600 and survive it. Yes, I'd say I owe my body some thanks. And if, after all that, it requires what amounts to less than just a tear drop of insulin each time to continue functioning, then that's what I'll give it.

My friend put it beautifully. "Angela," he said (and I paraphrase),"we all need certain things to live - like air, food and water. You just need this one extra thing."

And that definitely helps me feel less overwhelmed.


  1. Wow, Angela, good job at taking us through your hospital journey. It sounds horrifying to me, but you have pulled it off and continue to move through the process of overcoming this, effortlessly! Perhaps you don't see it as effortless, but you could have fooled me~! You Inspire!!!

  2. Many, many thanks for the words of encouragement, Tara. I'm grateful for them more now than ever!

  3. Wow! I would be devastated also! The thing that does bother me? Is how the Doc said the steroid "may" have caused it. That bothers me especially with all they are doing these days... GMO technology. Granted I do not drink soda of any sort, I don't eat meat from a store, I don't eat soy or corn products at all, I also eat a pretty strict organic diet. I still have health issues, due to NON organic foods being called Organic. All in all I think I would have developed Type 2 diabetes had I not changed my diet. & I whine about not being able to eat the things I would like to eat. LOL After reading your story I will remind myself to STOP being a whiner. LOL Thank You for sharing I feel badly for you going through it must have been rough! GLAD you made it with such a high blood sugar count!


  4. Thank you for your activism. I literally felt sick reading this - it took me back to my kidney stone event a month or so ago when I thought I was dying. I am very happy that you survived your life-changing episode, no doubt it was touch-and-go due to the awful medical care that you received. Long ago I stopped putting doctors and "the practice of medicine" on a pedestal. They are trained to make diagnoses based upon a tainted educational system, and I am not yet sure which are more dangerous, those who excelled in that environment or those who didn't, and that's a frightening thought. The same educational "malnourishment" exist for Lawyers and within "the law" as the story of your friend - the milkman - will surely attest. There is something seriously wrong with the system in which we find ourselves. It is anti-human, while pretending to be pro-human. We must re-educate ourselves - about our bodies, both our unique political bodies and our unique physical bodies. There is a systematic crackdown upon the raw food industry because it threatens their system of control, just as their is a crackdown upon anyone who claims sovereignty (from unlawful "color of law" statutes) because it threatens the same system of control. The fact they are cracking down and using mainstream informations sources to demean and demonize, to propogandize, is proof that we are on the correct track. Your support for "the milkman" may put you under the system's spotlight. I don't know if you are familiar with the health concerns (myriad) surrounding PG&E's digital utility meters, but please watch the following - http://www.youtube.com/watch?v=I2oF8YkUIvE - as you may need to protect yourself from this very real source of authoritarian blowback for your activism. The same channel has means of protecting one's self and one's loved ones. I am: /user/slewofdamascus - be well and stay free.

    dave from oakland.

  5. shy of pill popping, most doctors are clueless...used to know a MD very tuned into diet, nutrition that told me that in Med School, the drug companies started to come in for lectures, then other, off-campus treats (dinner, gifts)...

  6. Yes, Lisa - Even the so-called "organic" labelling can be misleading. Best case scenario is: Know your farmer, visit the farm, and ask lots of questions.

    I agree with lots of what you wrote, Dave. Sorry you went through what you did... Thanks for the additional info!

    Chris - Yes, the medical schools are well funded by pharmaceutical companies. Have you seen the documentary "Scientists Under Attack"? Highly recommended.