I was searching for some more public place to tell my story, rather than just on my profile. I'm not sure if this is the preferred forum/discussion/medium for such things as I'm very new to the site, but I'm really looking to talk to other diabetics here - get some feedback, make some friends perhaps who identify with me in a way none of my other friends really can. I know someone out there can certainly empathize with how alone I've felt since being diagnosed with Type 1 just a little more than one year ago.
And so, to introduce myself, I'm posting a blog which I first wrote for my Facebook profile a couple weeks after my diagnosis back in January 2008. Of course, it is plenty full of its own misunderstanding, as I was still trying to wrap my brain around the mad injection of information I had just been given by countless "authorities". It does, however, quite poignantly sum up my introduction to the dramatic life changes that would follow.
======
1/28/2008 - "FISH OUT OF WATER"
I'm still picking away the medical tape. I'm 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 lovely shades of rancid brown and green.
Apparently, I am a Type 1 Diabetic... and I nearly died finding out about it.
If you read my previous blog, you already know the back story: I went to my doctor with an ear infection just before Christmas. He gave me a shot of a steroid called Dexamethasone to reduce the inflammation, and an antibiotic to fight the infection. My reaction to the steroid was profound: dizziness, blurred vision, excessive thirst, excessive urination, and significant weight loss (17 pounds in 3 weeks, to be exact).
Now, steroid side effects (when administered in the form of injection rather than pills) are supposed to wear off in about a week. But *my* symptoms got worse...
On the Wednesday before my ER visit, I was so fatigued I couldn't keep my eyes open at work. I was walking through hallways (albeit not very straightly due to dizziness) literally carrying 4 or 5 drinks around at a time (water, juice, milk, soda, smoothies, Gatorade - whatever I could find, because I simply felt parched if I went longer than 10 minutes without drink), and I was eating normally but still *losing* weight. 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 glasses of water... all with very little sleep of my own, thanks to numerous restroom trips.
Thursday I felt bad enough to call off work entirely, so I could pay the doctor a visit. That morning, I picked up a tomato, ate it like an apple and then threw it up a couple hours later. My friend picked me up (I was too dizzy to ride my scooter safely), but the trip wasn't helpful. The doctor (who I'm going to replace after how he handled this ordeal) listened to my symptoms, took a urine sample, mumbled something about anorexia, couldn't explain the vomiting, told me to eat anything I wanted (to gain some weight back) and asked me to come back the next day.
Thursday night I had some chicken broth and couldn't keep it down. I made a smoothie that I nursed through the night along with my water and orange juice.
But between Thursday and Friday, my body crashed. I don't really know what happened that night, but I apparently wasn't feeling well enough either to change my clothes or to shower. And when I woke Friday morning, I called my friend to tell him I felt bad enough I'd probably need help getting out of bed, if we were going to make the follow-up appointment. After that, I remember very little... I tried to wash my face... I went to lie down... I tried again and again to move some money in my bank account online but couldn't even type in the web address... my roommate was on the phone with a client... I crawled to the bathroom... everything was unsteady... I left the door unlocked for my friend... I stretched out on the sofa... I closed my eyes...
Some time had passed (I've no idea how much), when I heard my friend arrive. I started awake and saw a flash of him inside my apartment. But my eyes didn't stay open for long. I could hear him talking to my roommate in an urgent tone. Something about the ER (he told me later that I looked like a dead cat with my eyes rolled back)... Soon, 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 hold on to him... Then nothing. Then I was in his car, with my feet on the dash... and after that, my eyes must have closed for a long while.
I heard bits of conversations here and there, but I was utterly helpless. My body was immobile. It dangled wherever it wanted. I heard my friend shouting something about a wheelchair... and then my consciousness was gone.
What happened then in the ER is something of which I have almost no memory. 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 do remember receiving a very thorough examination for pregnancy. I can't say for sure what happened, just that I definitely felt it.) I'm also told I asked for water for several hours, but they wouldn't give me any or let my friend give me any - at least not in the condition I was in currently.
To give you an idea of what all the fuss was about, a normal blood sugar is between 70 and 110. The most the ER nurses had seen was between 700 and 800. My blood sugar was 1600. (I've since been told by several people that this is the absolute highest they've ever seen, and that anything higher isn't really conducive to Life.)
So there it is... I should be in a coma or dead.
But I somehow 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 called my parents, friends, and coworkers to let them know what was happening. In brief moments of semi-consciousness, I'd assure nurses and doctors that they should keep him as informed as they would my family, in their out-of-state absence. My friend took care of me. 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. I'm told I received some crazy, stunned looks from people on the way to the ICU, as I was easily the only person under 50 making that particular journey. (I can't help but suspect that - because of my younger age - most of those who saw me then probably assumed my condition was related somehow to drug abuse.)
Once we got to the ICU, the nurses let my friend give me some water. It was in the form of a kind of sponge popsicle, which he first put in my mouth. I wet my lips with it too and wiped away the crust that had begun to form on them from having been so dehydrated all day. Then, he helped me apply some of the hospital's lip balm. He later said this particular sequence of events was like watching me come back to Life. And truly, I think this was the moment I began very slowly to regain consciousness and awareness.
I spent 2 days in the ICU on an insulin drip (I remember asking several times about whether the catheter was still there and feeling nervous that I would somehow not use it correctly or pull it out and spill) and then a day and a half in a regular hospital room after that. (My mom flew in the night before I was discharged, by the way, and was a tremendous comfort and help all week.) I had visits from all kinds of people - nurses, dieticians, my regular doctor, one of several ER doctors (who remembered me, wanted to introduce himself, called my numbers "impressive" and apologized "for everything we had to do to you in the ER") and an endocrinologist, or hormone doctor.
The endocrinologist was the man who recognized my condition as diabetes. This was the man whose instruction all the nurses were following, whose instruction I'm following now, 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" - regular blood sugar monitoring, insulin shots before every meal and before bed - all of this, on top of my body's trying to recover from the trauma itself.
My heart beat still feels irregular, my breathing is still abnormal, my emotions are high and low without warning, my muscles are weak and cramping, my head aches... but oddly, my vision is better than ever (and by that, I mean I've had perfect vision without contact lenses or glasses for the last three days - something that hasn't been true since I first got glasses in 5th grade).
Yes, I'm getting stronger, but I certainly feel a bit like a fish out of water with this, especially after having been bombarded with all kinds of information in the last week.
And here's the thing - if you hold up a list of side effects for Dexamethasone beside a list of symptoms for diabetes, they'll look identical.
So it's no wonder I had no idea what was really happening to me. I certainly wasn't shy about discussing my symptoms with whomever could shed some light on the situation. In fact, a couple friends of mine had even mentioned they'd heard some of my complaints had associations with diabetes. (By the way, if my friends could raise the question, why couldn't my doctor? I'm told I was a classic case.) In my ignorance, I discounted the idea almost immediately, of course, because I didn't fit the stereotype: middle-aged and overweight with poor diet and little to no exercise.
I had no reason to care or learn about the disease, or about any of the horrific stories I'd heard in relation to it, like people (diabetics who didn't take care of themselves, mind you) going blind or having appendages amputated due to gangrene or circulation problems. It was repulsive to me. After all, I would never let myself become THAT.
What I didn't know is that there are two types: Type 2, in which the body produces too little insulin (the stuff the pancreas makes which helps us break down sugars in our food so we can get nourishment) and the diabetic takes pills to stimulate insulin production (95% of all diabetics have this type - the stereotype); and Type 1 (aka Juvenile Diabetes), in which the body produces no insulin at all, and the diabetic must take insulin injections to survive (apparently top athletes and all kinds of thin, very active people - including Halle Berry - have this type, which I'm affectionately dubbing "the sexy diabetes").
The "why" and "how" it all happened with regard to me are simple, says the doctor. I've always been a Type 1 Diabetic, he says. It had just been sitting in a kind of dormant state, but certain things like steroids apparently have a way of uncovering it. So while I continued to take the same relative good care of my body that I always have, my body had stopped producing insulin after that steroid injection. As a result, it wasn't breaking down sugars or retaining any nutrients from foods I continued to eat. But my brain was working properly and told my body to look for those nutrients elsewhere - in liquids (hence, the extraordinary thirst). Trouble was, without insulin, I was pretty much peeing out the things my body needed to survive. I was "peeing sugar," my endocrinologist called it. That meant, for about a month, my body was basically starving and dehydrated. (In truth it really does make sense of other things that had been happening since before the ear infection; for example, I'd spent a few weeks wondering why I was so tired after work that I'd have to go straight to bed when I got home and then sleep until I had to be at work the next morning.)
But if it hadn't hit me now, say the doctors, it would have hit me probably by summertime. And if it was going to happen eventually, 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 (which 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 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.
======
THANK YOU, DALLAS, FOR SAVING MY LIFE AND FOR HOLDING MY HAND.
YOU'RE MY HERO. I LOVE YOU.
======
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 lovely shades of rancid brown and green.
Apparently, I am a Type 1 Diabetic... and I nearly died finding out about it.
If you read my previous blog, you already know the back story: I went to my doctor with an ear infection just before Christmas. He gave me a shot of a steroid called Dexamethasone to reduce the inflammation, and an antibiotic to fight the infection. My reaction to the steroid was profound: dizziness, blurred vision, excessive thirst, excessive urination, and significant weight loss (17 pounds in 3 weeks, to be exact).
Now, steroid side effects (when administered in the form of injection rather than pills) are supposed to wear off in about a week. But *my* symptoms got worse...
On the Wednesday before my ER visit, I was so fatigued I couldn't keep my eyes open at work. I was walking through hallways (albeit not very straightly due to dizziness) literally carrying 4 or 5 drinks around at a time (water, juice, milk, soda, smoothies, Gatorade - whatever I could find, because I simply felt parched if I went longer than 10 minutes without drink), and I was eating normally but still *losing* weight. 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 glasses of water... all with very little sleep of my own, thanks to numerous restroom trips.
Thursday I felt bad enough to call off work entirely, so I could pay the doctor a visit. That morning, I picked up a tomato, ate it like an apple and then threw it up a couple hours later. My friend picked me up (I was too dizzy to ride my scooter safely), but the trip wasn't helpful. The doctor (who I'm going to replace after how he handled this ordeal) listened to my symptoms, took a urine sample, mumbled something about anorexia, couldn't explain the vomiting, told me to eat anything I wanted (to gain some weight back) and asked me to come back the next day.
Thursday night I had some chicken broth and couldn't keep it down. I made a smoothie that I nursed through the night along with my water and orange juice.
But between Thursday and Friday, my body crashed. I don't really know what happened that night, but I apparently wasn't feeling well enough either to change my clothes or to shower. And when I woke Friday morning, I called my friend to tell him I felt bad enough I'd probably need help getting out of bed, if we were going to make the follow-up appointment. After that, I remember very little... I tried to wash my face... I went to lie down... I tried again and again to move some money in my bank account online but couldn't even type in the web address... my roommate was on the phone with a client... I crawled to the bathroom... everything was unsteady... I left the door unlocked for my friend... I stretched out on the sofa... I closed my eyes...
Some time had passed (I've no idea how much), when I heard my friend arrive. I started awake and saw a flash of him inside my apartment. But my eyes didn't stay open for long. I could hear him talking to my roommate in an urgent tone. Something about the ER (he told me later that I looked like a dead cat with my eyes rolled back)... Soon, 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 hold on to him... Then nothing. Then I was in his car, with my feet on the dash... and after that, my eyes must have closed for a long while.
I heard bits of conversations here and there, but I was utterly helpless. My body was immobile. It dangled wherever it wanted. I heard my friend shouting something about a wheelchair... and then my consciousness was gone.
What happened then in the ER is something of which I have almost no memory. 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 do remember receiving a very thorough examination for pregnancy. I can't say for sure what happened, just that I definitely felt it.) I'm also told I asked for water for several hours, but they wouldn't give me any or let my friend give me any - at least not in the condition I was in currently.
To give you an idea of what all the fuss was about, a normal blood sugar is between 70 and 110. The most the ER nurses had seen was between 700 and 800. My blood sugar was 1600. (I've since been told by several people that this is the absolute highest they've ever seen, and that anything higher isn't really conducive to Life.)
So there it is... I should be in a coma or dead.
But I somehow 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 called my parents, friends, and coworkers to let them know what was happening. In brief moments of semi-consciousness, I'd assure nurses and doctors that they should keep him as informed as they would my family, in their out-of-state absence. My friend took care of me. 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. I'm told I received some crazy, stunned looks from people on the way to the ICU, as I was easily the only person under 50 making that particular journey. (I can't help but suspect that - because of my younger age - most of those who saw me then probably assumed my condition was related somehow to drug abuse.)
Once we got to the ICU, the nurses let my friend give me some water. It was in the form of a kind of sponge popsicle, which he first put in my mouth. I wet my lips with it too and wiped away the crust that had begun to form on them from having been so dehydrated all day. Then, he helped me apply some of the hospital's lip balm. He later said this particular sequence of events was like watching me come back to Life. And truly, I think this was the moment I began very slowly to regain consciousness and awareness.
I spent 2 days in the ICU on an insulin drip (I remember asking several times about whether the catheter was still there and feeling nervous that I would somehow not use it correctly or pull it out and spill) and then a day and a half in a regular hospital room after that. (My mom flew in the night before I was discharged, by the way, and was a tremendous comfort and help all week.) I had visits from all kinds of people - nurses, dieticians, my regular doctor, one of several ER doctors (who remembered me, wanted to introduce himself, called my numbers "impressive" and apologized "for everything we had to do to you in the ER") and an endocrinologist, or hormone doctor.
The endocrinologist was the man who recognized my condition as diabetes. This was the man whose instruction all the nurses were following, whose instruction I'm following now, 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" - regular blood sugar monitoring, insulin shots before every meal and before bed - all of this, on top of my body's trying to recover from the trauma itself.
My heart beat still feels irregular, my breathing is still abnormal, my emotions are high and low without warning, my muscles are weak and cramping, my head aches... but oddly, my vision is better than ever (and by that, I mean I've had perfect vision without contact lenses or glasses for the last three days - something that hasn't been true since I first got glasses in 5th grade).
Yes, I'm getting stronger, but I certainly feel a bit like a fish out of water with this, especially after having been bombarded with all kinds of information in the last week.
And here's the thing - if you hold up a list of side effects for Dexamethasone beside a list of symptoms for diabetes, they'll look identical.
So it's no wonder I had no idea what was really happening to me. I certainly wasn't shy about discussing my symptoms with whomever could shed some light on the situation. In fact, a couple friends of mine had even mentioned they'd heard some of my complaints had associations with diabetes. (By the way, if my friends could raise the question, why couldn't my doctor? I'm told I was a classic case.) In my ignorance, I discounted the idea almost immediately, of course, because I didn't fit the stereotype: middle-aged and overweight with poor diet and little to no exercise.
I had no reason to care or learn about the disease, or about any of the horrific stories I'd heard in relation to it, like people (diabetics who didn't take care of themselves, mind you) going blind or having appendages amputated due to gangrene or circulation problems. It was repulsive to me. After all, I would never let myself become THAT.
What I didn't know is that there are two types: Type 2, in which the body produces too little insulin (the stuff the pancreas makes which helps us break down sugars in our food so we can get nourishment) and the diabetic takes pills to stimulate insulin production (95% of all diabetics have this type - the stereotype); and Type 1 (aka Juvenile Diabetes), in which the body produces no insulin at all, and the diabetic must take insulin injections to survive (apparently top athletes and all kinds of thin, very active people - including Halle Berry - have this type, which I'm affectionately dubbing "the sexy diabetes").
The "why" and "how" it all happened with regard to me are simple, says the doctor. I've always been a Type 1 Diabetic, he says. It had just been sitting in a kind of dormant state, but certain things like steroids apparently have a way of uncovering it. So while I continued to take the same relative good care of my body that I always have, my body had stopped producing insulin after that steroid injection. As a result, it wasn't breaking down sugars or retaining any nutrients from foods I continued to eat. But my brain was working properly and told my body to look for those nutrients elsewhere - in liquids (hence, the extraordinary thirst). Trouble was, without insulin, I was pretty much peeing out the things my body needed to survive. I was "peeing sugar," my endocrinologist called it. That meant, for about a month, my body was basically starving and dehydrated. (In truth it really does make sense of other things that had been happening since before the ear infection; for example, I'd spent a few weeks wondering why I was so tired after work that I'd have to go straight to bed when I got home and then sleep until I had to be at work the next morning.)
But if it hadn't hit me now, say the doctors, it would have hit me probably by summertime. And if it was going to happen eventually, 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 (which 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 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.
======
THANK YOU, DALLAS, FOR SAVING MY LIFE AND FOR HOLDING MY HAND.
YOU'RE MY HERO. I LOVE YOU.
======