Paralyzed and Powerless

Let me begin by saying this story is my personal account of the things that happened to me leading up to October 9 and 10, 2015 and in the weeks and months following. It is not a rant; it is not a bad review. It may be a cathartic experience to me; it may just become a permanent reminder of what a fool I am. Regardless, here it is.

I guess it started in September 2015. Well, actually, now that I know what I know and I have been thinking about it for months, it may have started at least a year ago. At the very least, it started in September.

I was tired.

All the time.

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This was taken about halfway into losing the weight. I was not in good shape at this point, but ignoring it was easy for me.

At its worst, I couldn’t stay up for more than an hour at a time without reaching for a soda (something I wouldn’t have been reaching for otherwise) or for one of the four meals a day I was eating. My hunger and thirst were constant (which, in turn, brought on a near constant need to be within walking distance of a restroom).

Despite all this food and drink, I was losing weight. Fast.

Fifteen pounds were gone in two weeks. I told people I would see a doctor when I dropped to 113 pounds (less than I weighed in high school), but I knew I was lying.

I liked the first ten pounds, thought I was looking better, but after a while I was a bit frightened by it and all the other symptoms. I couldn’t stay asleep for more than an hour or two at a time (while also being unable to stay awake). My vision was blurring constantly, my headaches were overwhelming and I was angry all the time.

A few of my friends began worrying about me, listening to my recounting of what was happening to me. A man slept on my couch because he didn’t know what else to do for me. Another man set for hours with me, listening to me try to make sense of my body, my weakness. It wasn’t his job, but I was lonely and scared to bother people with whining, so I let him in anyway.

Then, the problem manifested in my hands.

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The excess sugar in my body ravaged my hands. Knowing I am prone to dry skin, I chose to ignore this sign that something was very wrong.

My hands started cracking and bleeding uncontrollably. Amazingly, I was able to ignore this, much like my other symptoms, explaining it away like all my other symptoms with a “It’ll pass.”

I started saying “it’ll pass” so much that I believed it. Believe I wouldn’t be in a bathroom every hour, my hands would heal themselves, I’d be able to stay awake.

My mother was worried how mothers are, and she and my grandfather decided to come see me after seeing that photo of my hands. They arrived late Thursday night, and by Friday morning I was in the emergency room in the local hospital. As I said, I am not here to write a bad customer service review, so I am not listing the names of places and people. If you’re curious, you can figure it out.

The E.R. was very empty that morning, so I was moved into that insensitive line of questioning quickly. No I wasn’t drinking, doing drugs or having sex. Yes I was sure. Yes, I was losing weight, but no I wasn’t trying.

After that indignity had passed, I was moved with my mother into one of those white rooms that were meant for people to die inside of. Nurses came in, asked the same questions, put me on fluids and took blood.

Poorly.

Those nurses made light of my “small veins,” reasoning that that was why they had missed their mark in my arm. I was terrified to think what happened if a woman brought her baby in for a blood test. I assumed they must just let babies die here like everybody else.

At one point, the male nurse came back into the room and asked me if I was diabetic. I thought he was out of his damn mind. Of course I wasn’t.

More breezing in and out, and soon I learned the feeling of having blood sucked from my arteries. Again, done poorly. So poorly, in fact, that one nurse had to stick the needle into my wrist twice while the other offered me a hand. I cursed at them both. If you have never had an arterial blood draw before, it hurts. A lot. If anybody has ever complained of the nauseating feeling of having blood pulled faster from their hearts through their wrist, believe them.

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The bruise in the center of my wrist is the result of two tries an an arterial blood draw. I wouldn’t recommend it for the faint of heart.

Hours of wasted time passed, and the E.R. doctor presented himself again. Again, diabetes was brought up. Again, I couldn’t believe the crazy, chipper bastard bringing this news down on me. They told me I would spend the night. I wanted to tell them they could go to hell.

He told me my blood sugar was 360 (compared to a normal human’s 80-120) and that my A1C (blood sugar over a period of 3 months, garnered by the hacks with the arterial blood draws) was 14.4 (compared to a normal human’s 6).

My mother was an angel, but she was no rock. I wasn’t the only one crying, but I was the only one pointing out the inept actions of the medical professionals on call that day. She wanted me to trust them. I felt like John Mulaney when he talks about how his parents trusted any adult human more than him when he was a boy.

They moved me upstairs into a room with a woman recovering from surgery, and thus began a the day I thought I really might be killed in a hospital.

I shared the hospital room with a cantankerous woman recovering from surgery and her obnoxious relatives. They were the kind of people that made guest restrictions a necessity.

Then, the barrage of staff came. My blood was drawn (poorly) almost hourly. A diabetes educator came in, tossed me a meter, barely showing me how to use it, and left with barely half a useful thought about things like how to eat as a diabetic.

Women dressed as nurses, but who couldn’t be nurses purely for the things they said, came in and out, looking at me, looking at my chart and saying things that are still affecting me.

“You’re so skinny to be diabetic.”

“Gosh, I wish I weighed what you do.”

“I had to double check your chart. You’re so thin I didn’t think it was right.”

If I had been of sound and educated mind and body, I would have told them I was Type 1 Diabetic, meaning that, though it didn’t emerge until I was 20, it had nothing to do with my weight or my lifestyle. I would have said that those aren’t things you should ever say to a person, particularly not one in a hospital bed. I would have said they likely didn’t want to weigh what I did, especially since my weight stemmed from the fact that I had been dying for three weeks.

Yes, really dying. It sounds melodramatic to me even now, but in that time that I had no functional pancreas, my body was not processing sugar, and I was, in effect, starving to death.

I didn’t have any of that information or strength at the time, though, so all I could do was lay on my back like a helpless child and listen to these psychotic middle-aged woman muse about their high school figures.

A nurse came in who was easily over six feet and 300 pounds. As he drew blood from my middle finger (because of those silly small veins of mine), he said, “You know, it wasn’t a matter of if, but when for me.”

It took me a minute to realize he was talking about diabetes. This colossal man and me. His Type 2, mine Type 1. It was dumbfounding. I thought he was easily the densest man walking through the hospital until I met the next nurse.

She was young, very possibly my age, and was the first person in a while not to talk about my size or about their old, white man relatives who had my same condition. Our conversation took a turn for the crazy backwoods when, after asking me about my then-boyfriend, she said “Well, I hope you can marry your boyfriend so he can help pay for your Master’s.”

She was suddenly not a woman I wanted to have administer a “high risk hormone” like insulin to me.

A new doctor came up to see me and confirm that I was, in fact, Type 1 Diabetic and couldn’t ignore it anymore. Instead of boring you with this man’s entire speech, allow me to share with you two key phrases that made me want to claw out his eyes.

“It’s a good thing you came when you did. Diabetics tend to suffer from heart attacks, kidney failure and blindness if left untreated.”

That is not a way to talk to a person who has been diabetic for about 20 minutes.

“Who knows? If you can maintain for the next five to ten years, they may find a cure and you may be normal again.”

I had no idea that diabetes was the thing keeping me from being normal. I thought it might be my poor eyesight, the muscle tension in my shoulders that hasn’t healed since junior year of high school, my misshapen kidney, the birthmark on my liver, my pulse-pounding anxiety or six years of being major depressive. Apparently not. Apparently, all I needed in this doctor’s book to achieve normalcy was a functioning pancreas.

I could have spat in the man’s eye.

All the while, my mother sat with me. I began having to make phone calls to people about missing obligations (and that hurt more than the arterial blood draw). Friends started knowing I was in the hospital, and they came, but it was too many of them all at once and some of them that I did not want to see at all who brought their plus one’s all to stand around and look at pathetic me laying on my back in a hospital bed.

I talked and laughed with them, but really I wanted them all to suddenly need to be somewhere else.

People texted me and cared even though they shouldn’t have, and I felt like I was getting too much of all the wrong kinds of attention.

Hours later, a new moron entered the room and gave me an injection to prevent blood clotting. You know, me, a 20-year-old female weighing 113 pounds who would be in the hospital for less than 48 hours. Come on, people.

After hours of fighting, I finally convinced my mother to go sleep in my apartment. My grandfather had come in to see me and gone home. I was tired of feeling like I was wasting her time, and I was sure she was tired of hearing me curse every medical professional that came into the room.

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This IV was in my arm for hours, even though it was only used for about 45 minutes. I slept with my arm open so that it wouldn’t prick me through like a sewing needle. It was too big.

When she left, I cried. Hard. About everything that was happening to me. About the too big needle they had left in my arm for reasons unbeknownst to me (or them). About the fact that my boyfriend was 600 miles away as he had been the whole time I was sick. About how angry and small I was.

They woke me up every few hours as I almost fell asleep to draw more blood. I never remembered hearing back about any of those tests.

The next morning was just as hellish as the day before had been. A new diabetes educator (think back to the fool with the pump) came in and told me most of the things the previous woman had said to me we inaccurate. Imagine getting conflicting opinions from two people working in the same hospital in less than 24 hours.

My mother came back, and I was beyond hateful. I was sick of the people I was convinced were not certified to do anything more than mop floors and were only trying to kill me. More friends came to visit, and I watched a film with my boyfriend over Skype (I didn’t realize it would be the beginning of the end as I laid in his sweatshirt). By that point, I hated everybody but him and my parents.

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To put it simply, they ravaged my arm.

Finally, around 6:00 that night, I had “proved” to the doctors that I could inject insulin into my thigh (I didn’t have enough fat to do it in my arm or abdomen). They let me go home with a lot of directions and no answers. Meet a diabetes educator. Go see our endocrinologist. take insulin. Check your blood sugar. Eat like a diabetic. Give up your freedom and feeling of humanity. Accept that your life is over.

I had my work cut out for me.

Over the next few days, my mother stayed with me, looking at food, setting up appointments, trying to do her job. I could only feel badly that I was keeping her from her paying job and leaving her at home for hours at a time while I went to classes. My bruises were awful to look at, so I started to put fake tattoos on them.

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I started putting fake tattoos all around the bruising. It made them look like part of a design.

After she left, I fell into a numb acceptance that I would be pricking myself to eat for the rest of my life. I did it, and managed to quickly lower my numbers, but not before I met the root of all sexism.

The endocrinologist was a fat man, likely in his fifties, likely on his way to Type 2 Diabetes. He walked in, took one look at me and likely decided that he knew how to handle this one.

I asked him questions about lowering my numbers and general things, and the responses I got from him were beyond obnoxious.

“Well, your kids won’t likely have diabetes just because you do. They might, but it’s unlikely.”

What the hell? I said nothing about children. I want no children. I didn’t know where that information came from. I tried asking what could cause diabetes.

He rattled off a list of hereditary, genetic, deformed and viral causes. Yes, viral. But he didn’t expand on that last one which left me reeling because he had just essentially implied I could have gotten diabetes from touching a door knob. I knew that wasn’t the case, but regardless.

I don’t remember what spurred this part of the conversation, but it was when I had figured out his M.O.

“You can still live a happy, productive and reproductive life.”

He had taken one look at me and decided I was a young woman, therefore my main concerns were my appearance and my fertility.

Well, thank you, Doctor, for your permission. As to the first one, no, my life will never be happy because you are now a part of it. The second one was never not true. I did not miss a class or an assignment the entire time I was ill. And the third, there he was, trying to give me kids again.

“You know, 1999’s Miss America was a Type 1 Diabetic.”

Oh, thank God! My dreams of winning the tiara had been crushed by this illness. You really know how to make a girl feel better, Doctor. Well, maybe that would make a girl feel better. Not me.

I left his office with a book for parents of children with diabetes. That was the resource he had available for me.

 

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The weekend I was released from the hospital, I looked like a sick little boy. I felt like one, too.

Since then, I have realized a lot of things. No matter how I look now, I am convinced I am fat because those woman drilled how skinny I was into my head. No matter what I think now, I feel I did my boyfriend a terrible disservice relying on people who were close for something that I would have rather had him doing. I hate my broken body now more than ever.

I feel like I have to tell people I am Type 1 specifically because somehow being Type 2 would be my fault. People tell me how and how much I should eat without even knowing the disease.

The endocrinologist still sends the wrong prescriptions in my name (and duplicates of them when I’m extra lucky) even though I found an endo in my hometown that I believe walks around with her head outside her ass who is supposed to prescribe me what I need.

I know diabetes will be expensive for the rest of my life. I know that ophthalmologists are waiting patiently for my eyes to begin leaking blood in the back, which eventually, they say, will happen.

Stupid things make me want to cry now, like an empty bottle of Coke in my kitchen with my name on it because it was the last soda I had before they tried to shame me into never eating anything but celery again. I refuse to throw it away.

I know that I will never again look down at my thighs and not see bruising and pockets of blood from needle after needle of “life saving” medicine.

I know that there is nothing I can do about any of it.

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I don’t remember the last time I wore a pair of jeans and didn’t have blood stains on the thighs from injections.

That is the story. It isn’t perfect, it isn’t incomplete, it didn’t make me realize anything worldly or profound. If I may be so bold, I only hope that you read it in full and left thinking about it.

 

 

 

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6 thoughts on “Paralyzed and Powerless

  1. Amanda! I’m always here if you want to talk. Also, you should probably file a complaint to the Better Business Bureau for the shoddy doctors and nurses.

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  2. Amanda, I am so sorry you are going through this!!! Tell your mom to make sure this post reaches the hospital where you were treated! They definitely need to listen to you! Hell, if you like to write…start a journal for yourself…it may eventually develop into a book!! You definitely have the words and wisdom!!! I wish you the best…you may possibly want to check out a support group…It may be for you and maybe not…but sometimes you can gain a wonderful friend or two whom really understand what you are going through. Please keep us posted for I believe…you may have a phenomenal impact on others! “Paralyzed and Powerless” may be a go to blog…take it at your pace every other month or every 6 months…

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    1. Mary, I had considered a continuing story line, but for me, the most important thing was merely sharing the story. I am not looking for support (though I am grateful for it) so much as I wanted to make sure people knew what had happened to me. Thank you for your thoughts.

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  3. Wow Amanda! As a nurse, I don’t know what to say except I am sorry for what you had to go through. But, your mom is right and you are an amazingly strong woman and you will help others by sharing your story.

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