Right now a friend is helping cutting down trees in our back yard, our dog is upset she can’t go out to join them, and my mother is exhausted from the work she’s done all day.

Our back yard looks like a forest of miniature trees with branches and leaves littering the yard.

Yesterday there were 5 big trees surrounding the yard’s perimeter.

Today there aren’t many.

Instead they are chopped up into small pieces that cover the yard.

All this because, yesterday a tornado blew through our yard, causing trees to fall down into the fence and our sundeck. Strangely enough the trees blew down, but the fence is intact (except where the trees were beside it).
One big, old maple tree, blew onto our sundeck and roof. It’s the one Dad’s friend is carefully chopping into pieces, to get it removed from the sundeck and roof, without causing damage to each.

______

Dad just came in, huffing and puffing. He’s recently gone on oxygen and is having trouble breathing when he exerts himself, but he wants to be apart of the activity.
Mom and I have been rushing around supporting him, getting new oxygen takes to take outside, getting tools, and just generally supporting him and his friend as they work to take the tree down before the weight of it causes any more damage.

_____

It wasn’t that long ago that I was so sick, that I couldn’t walk from the couch to the bathroom without hyperventilating. I’d just gotten out of the ICU, and I wondered if I’d ever get the energy to do any more than that.

____

It wasn’t long before that, that my mother had Normal Pressure Hydrocephalus, and I was her main caregiver. It took a year to diagnose her, and in that year she lost so many abilities.
After her surgery, she spent months regaining all those abilities.

____

We aren’t much by the world’s standards. We aren’t millionaires, we don’t have fancy houses. Status wise, well, we are just normal people who struggle with our health.
My father, a once strong man, who I though at 12 belonged in the big and tall club, now looks like an old man, dragging an oxygen tank behind him.

___

After my last blog post a discussion about taking medical history’s in appointments took place.

I said that I thought doctor’s were snoopy, asking questions about things that happened years ago. Somebody very nicely told me that medical history’s help, and apologized they seem so intrusive. (Thank you).

The question “What is your occupation”, always annoys me. If I said “I work in the prime minister’s office”, would I get more attention than if I said “I’m unemployed?”

The question “Who do you live with?” also annoys me. If I said “I live with my husband”, would I get more attention than if I said “I’m homeless?”

I always thought those questions were designed to judge a person’s worth, and then decide how hard to try, based on that worth.

If those questions are designed to get at abilities, they don’t work.

____

I am unemployed, I live with my parents, and I would be rated a the lowest abilities with those questions.

But….

If you look at what I do….

Before I became too sick to do it, I cooked, cleaned and cared for my parents.

My father had a job that took him on work trips often, my mother had undiagnosed NPH, and I was her main caregiver.

Without me, she would have gone into a home, and I’m not sure she would have gotten diagnosed.

I took her to multiple doctors, and I phoned specialists again and again telling them I needed a more urgent appointment. I pushed for somebody, anybody to diagnose her. Finally she was diagnosed by a neurologist, using an MRI.

Dad couldn’t do it, because at that point, he was home for a long weekend twice a month.

By the end Mom couldn’t take care of herself.

Thankfully Mom had surgery and made a full recovery.

By the time I got sick, Mom was able to take over the cooking and cleaning. There was a role reversal of caregiver, care receiver, that was hard on both of us.

_____

But the answers of “I live with my parents”, and “I’m unemployed” would have told you nothing.

Instead ask questions like “What do you do during the day?” and “what unpaid work do you do?”

Because paid work, is not all work. It’s not even the most important work a person does. Caring for parents, raising children, taking care of the yard, cooking, cleaning, and all the things a person does at home, are also important.
______

Ask about a person’s education or what they do for fun?

Note: I’ve learned that people don’t like hearing I’m good at math. They don’t even like it when I provide the answer to a math question they’ve been struggling with. For this reason I usually pretend to be just as bad at math as everybody else. If you think I’m bragging, I’m not. I just want to illustrate a point.

_____

I am good at math. I always have been. When I was under sedation, I realized I couldn’t remember the proof for 1+1=2, always equals 2 and never equals anything else.

It is the basis of addition, the reason additions works the way it does, and one of the reasons number theory works the way it does.

I was very upset that I couldn’t remember, because math is how I saw the world until then. I was always doing math in my head, pondering math questions, and relating it to what was happening in my life.

My mother was shocked when I went shopping with her as a child. When we got to the till, she pulled cash of her wallet, and I said a number. She turned to me and said “what”, and I said “that’s the amount of change you will get back”. I was exactly right, and had calculated the price of everything she got, the tax on that, and the change she would get back to the penny, all in my head.

She used that skill, ever after. At any point in the shopping trip, she would ask me “what’s the total now”, and I would tell her.

I lost math after I was in the ICU. I seemed perfectly fine, like I had lost no cognitive function at all. Those stupid questions about “what animal is this”, and “what’s the date”, didn’t access my cognitive loses at all, because those questions didn’t take into consideration of what I knew before.

____

A few weeks after I got out of the hospital, my father phoned to say he had seen a long train. He knew how fast he was going, and how long in time the train took to pass him. He wanted to know how long in km the train itself was.

I burst into tears. He asked me questions like that before, and I always answered. Now I couldn’t remember how to calculate it, and when I looked it up on the internet, I couldn’t understand the explanation of how to calculate it.

It hurt me deeply. I felt I had lost a part of who I was. Math was so integral to who I was that I felt like apart of me was gone.

It’s been 18 months, and I am regaining my math and cognitive abilities. My mother says she notices improvements every day. And I am thankful.

____

But the cognitive test questions, the occupation questions, the “who do you live with questions”, didn’t at all detect a cognitive problem.

If a problem isn’t detected, it can’t be treated.

I deserved treatment as much as any body else.

____

I look at Dad with his oxygen and health problems and I wonder what questions he will get? Will his status from employed to unemployed affect his health? Are those questions really used for judgement? Or are they used to assess ability?

If they are used for assessment, do they work?

They didn’t with me.

____

Dad’s friend is back. He went to the store for a new saw blade. He’s going to finish the job of tree cutting now.

And that is another thing that should be taken into account.

Who will miss the person when they die? Who does this person rely on? Who has this person helped? How did they give to those around them?

Because that is what’s important.

____

I’m going to end it hear, and see if Dad’s friend needs help.

I wrote this in my dairy the week before I went to the ICU.

I was already getting sick, because the allergy I had was the kind that builds up over time.

Diareha and vomiting had become so routine that I went christmas shopping the day before I was admitted to the ICU.

I was born sick, and I was never going to be the child to get the perfect attentence award in school. In fact an award for being healthy didn’t make much sense to me, because I never had the chance to be that healthy.

Being born sick, I learned at a very young age, that self talk can make you feel sicker or better, and telling yourself you aren’t that sick, gives you more time and energy to play.

With that in mind, 6 days before I went to the ICU, I wrote the following in my diary:

Questions:

Am I really sick?

Am I making it up because I identify as being the “sick” one?

Am I dying?

Can I control it by thinking “I”m not sick”, to make myself less sick or “I’m sick to make myself more sick?”

Can I make it better by measuring?

Can I make it better by eating 3 meals a day, getting regular exercise, using my apple watch, taking all of my medications all of the time, and fixing my sleep schedule?

Could it be depression?

And maybe if I just tell myself I”m not sick I can just go on without being sick?

I’m thinking that won’t work. That’s been my approach till now, but it’s not working.
So what will work?

_____

And then I go on to list the things I can control, and question if they will make me better.

6 days later, I was rushed to hospital by ambulance, wasn’t breathing by the time the ambulance got to the hospital, was operated on, and admitted to the ICU.

I crashed on Christmas day. When I woke up, I was told I got as close to death as one can get without dying.

The kind of allergy I had, apparently builds up over time, and then presents itself as an emergency.

I wasn’t faking it. I was sick. Very sick. But I didn’t know that all the symptoms I had were indicative that I was sick.

_____

I remember very clearly, being 5 or 6 years old, and realizing that if I said to myself “I’m so sick”, that I could make myself feel worse.

If I said to myself “I’m not sick”, I could have more energy and health to go play with my brother. I could make the pain go away, by not concentrating on it.

And it’s something I’ve kept with me since I was a child.

When I was in university, I had surgery during christmas break, and went back to school when christmas was over.

That first week of school, I was so sick, that each time I walked to my car after school, I wondered if I could make it.

I wanted to sit in the snow, and rest, but I knew I’d get cold and might not be able to get up again.

Finally, one day I phoned my mother for emotional support, and she said “Just come home”.

I said “I’m not that sick. I can do it”, (I can’t remember the exact words)

She said “You are sick. You just had surgery. Come home and miss a couple of days”. I went home. But even then I wondered if I was sick enough to miss school.

_____

This is my life, and for the most part always has been.
I’m telling you this because I know mostly doctors and hospital staff read this.

If you have a patient who knows how to be sick, they may not tell you how sick they are. To them being sick is normal. They don’t know how to be healthy. If they stayed home every time they felt under the weather they would never go out.

Regular scales of 1 to 10 for pain, don’t work for them, because they have felt pain most people haven’t felt. They are used to ignoring pain and symptoms, and might not notice them when you ask them about it.

Do not rely on personal histories, because they will not give complete personal histories.

____

If I gave a complete personal history each time I saw a new doctor, I would use up my 5 minutes of exam time, telling lengthy stories.

Besides, I just don’t remember it all, and neither do my parents.

I’m so used to telling myself I’m not sick, that telling you how sick I am, isn’t always possible.

_____

Please remember that next time you see somebody who has been sick since childhood?

Please share this and tweet it?

Thank you for reading.

As I said before, I started documenting my recovery from illness almost as soon as I woke up from sedation.

When I first woke up, I didn’t think I lost any abilities. I was wrong. It’s been 18 months and I’m just now sort of getting to where I was before. I still haven’t regained all of my abilities, but I’m reassured by my mother that she sees improvements in my abilities often.

One of the things I did, was list the things I had done for the first time since getting sick, and put big colourful boxes around the statement “this can go under the category of things I haven’t done before since I was sick”, when I did do something new.

Almost a month after entering ICU: “Read without covering one eye”.

When I first awoke from sedation, I couldn’t read. The words were just squiggly lines. As I got better, I could read with one eye covered, and then it was only Archie Comics that were lettered by Bill Yoshida (not even all the stories), and then large print books. Finally this month, started a novel for the very first time.

I always have had dyslexia, but my dyslexia became so much worse when I was sick.

A month after going into the ICU: “I’m not seeing just shapes anymore, which is good.” Yes at first I saw only shapes. Everything was dark, and I couldn’t distinguish faces. If you were about the same hight, weight and skin colour as somebody else, I couldn’t distinguish you from the other person. I really appreciated hospital staff who introduced themselves each and every time they approached my bed.

6 weeks after going into the ICU: “Explain things to mom and make sense.”

6 weeks after going into the ICU: “Realize that I said mean things to people when I was angry”.

6 weeks after going into ICU: “Laugh out loud”

7 weeks after going into ICU: “Walk to the bathroom without huffing and puffing once I got there.”

7 weeks after going into the ICU: “Make my bed. The blankets didn’t see as heavy”.

9 weeks after going into the ICU: “Walk to the school parking lot”. The school is across the street. We can hear the bell and the morning announcements in our house when our doors and windows aren’t open.

3 months after gong to the ICU: “Make a meal by myself. Cauliflower and cheese sauce”.

That’s it for now.

If you are interested in more, please let me know. I skipped things to make the list shorter, and I haven’t gone to the end.

Honestly, I want to make this blog to help ICU staff and current and future patients of the ICU. I also want to help myself get back into writing.

But… well. I don’t know if this will help. Do you want to know how quickly and slowly people get better after being in the ICU? I’m starting to get the anxiety and extreme tiredness I feel most of the time I look at my old diaries and what really happened. So this might be a short list, and a terrible blog post but it’s the best I can do at this time.

I also have diary entries of how I was emotionally feeling. I’m obviously not a robot, and I can and will decide what to put in this blog, but if you tell me what you want, I can give that to you too.

Thanks.

As always, if this is helpful to you, please share it.

Note: Like all of the posts I’m posting today, this is an old post from my old blog. It was written and posted on the anniversary of going to the hospital, even though this day right now, is not the anniversary of going to the hospital.

Today is an anniversary of going to the hospital.
And I would like to say Thank you.

To everybody who has read this blog (that includes you, who are reading these words right now :)), thank you.

To everybody who has liked, retweeted, tweeted or quote tweeted any of my blogposts, thank you.

To everybody who has responded to my tweets thank you.
You give me the courage to go on. Writting this blog is emotionally difficult, and I thank you for joining me in the journey, encouraging me, and sharing it with others.

To those who work in ICU’s across the world, thank you.

I drove past a bad accident today. 3 ambulances, several police and 2 fire trucks surrounded a multi car accident. As I continued driving, 2 more fire truck and another ambulance passed me going the other way.

I thought of the people in the accident, and wondered if any of them were heading to the ICU. I thought of the crew trying to save them, and wondered if they needed the jaws of life. I thought of the hospital, and wondered if even at that time they were getting ready for some trauma cases.

And I thought of the ICU I was in and wondered if they were getting beds ready. I wondered what they would do, if the ICU was full, and more people needed to go. Surely they wouldn’t turn people away?

To those of you, who do any of those jobs, thank you. I know you aren’t thanked enough, I’ve been trying to write my own ICU staff (doctors, nurses, others), for a while now, but every time I try, I can’t.

Strange, I’ve been writing for years (ever since I was 11, almost 12), but when I try to express my gratitude, for specific things people did there, I get too emotional. I just emotionally can’t do it. It’s not that I’m not thankful, it’s that it’s so painful, it’s hard for me to discuss those memories. I’m trying in this blog, because I want to help other people, but…. It hurts, but…. I will keep trying.

When I was in the ward, after the ICU, I had a med student who couldn’t see me.

It wasn’t really all his fault. He was taught “if you hear hoof beats, look for horses, not zebras.” The problem is, a Zebra was laying in the bed in front of him, but he couldn’t see me. Through his teaching, and arrogance, he could not see what was right there in front of him, and he could not hear what I said.

I am a Zebra, and have been since I was born. I was the baby that had “failure to thrive”, the child that had so many surgeries that my parents lost count, the adult that forgets large parts of my medical history when I talk to new doctors because it’s just so long, the patient who doesn’t mention surgeries, until a doctor looks at my abdomen and says “what are these scars”, the patient whose family doctor still can’t remember or pronounce the name of the large surgery I had when I was 3, the patient whose blood levels are always wonky, and the patient who so often reacts unpredictably to medications.

I look healthy on the outside. I always have, and sometime I’ve felt healthy. On the inside… Let’s just say I always notice that moment when ultra sound technicians notice the differences in my organs. Their eyes get bigger, and they quit small talking. When I asked what’s wrong, they say they can’t tell me.

I like being unique, because being unique on the inside, allows me to be unique on the outside. It allows me to take my own path and not follow the crowd, because I can tell myself “I’m not like everybody else on the inside. Why do I have to do what everybody else does?” It gives me extra freedom.

But it also makes me invisible.

In the ICU they believed how different I was.

In the ward, after the ICU…

Try telling a med student that you need a certain type of medication that he hasn’t heard of. Try telling him that the blood tests he took may say my kidney’s are fine, but I know that they aren’t. I know that I’ve had more tests than he can imagine, that although the blood tests look good, my 24 hour urine tests, will show that I’m urinating everything out because my kidneys no longer know how to filter.

I’m sick. I crashed in the ICU just 5 days ago. It’s -45C outside, and nobody’s car is starting, making visiting me very difficult. I don’t have the verbal support of my family, but I know my kidneys aren’t doing well, because he has deprescribed a medication that is rare, but that I need, and he insists that he “knows everything there is to know about kidneys”, and my kidney’s are fine.

My body is so different, that it can’t even do kidney disease right, making me need to take medications that most people with kidney disease have to avoid in their diets. To find the medication I needed, I needed someone with a Phd in community pharmacy, to find a company that would provide it to my pharmacy. The nephrologist prescribed it, I took it to my pharmacy, and they sent me to somebody else.

I might not be a doctor, but I know my body. I know how I feel when I don’t have the medication I need. I’ve done the research, I’ve talked to the nephrologist and the Phd pharmacist, and I know what I need.

The clock might have been going backwards at the time, but I knew that wasn’t real, and I knew that I was getting weaker and sicker as the hours progressed because I hadn’t had the proper medication in 3 days. I knew the name of my nephrologist, the name of the transplant pharmacist, and the name of the community pharmacist. If these were all delirium induced hallucinations, how could I have come up with the right terms and names?

How could I have explained complicated satistics about a bell curve, and not everybody is on the bell curve, and I’m one of them? Honestly does anybody who doesn’t understand this stuff come up with it because of delirum?

But he stood at the end of my bed and said “I know everything there is to know about kidneys, you’re kidneys are fine, and I don’t have to phone your nephrologist.”

If he knew everything there was about kidneys he’d be a nephrologist. He didn’t even know how the bell curve worked. He acted like he was the doctor, I was stupid, and I should trust him in everything.

But that’s not true. First, if we were back in my number theory classes, he wouldn’t have been able to follow. He’d be the person who knew nothing.

Do not think that just because somebody doesn’t have the knowledge that you have, that you are smarter, better and infallible?

Second, he couldn’t see me, because he was taught to disregard every zebra he ever met. To him, everybody’s a horse, and if someone tells him differently, they are lying.

Third, his arrogance, didn’t allow him to even learn about zebras. He will never be able to see zebras, because he’s too arrogant to ever believe that somebody might possibly know more than him. He will never learn, because he’s not open to learning. He thinks he knows everything.

I find myself hoping that he failed medical school miserably, never made it to residency, and will never be able to hurt other patients, like he hurt me.

I finally got him to listen in 2 ways: one my mother told the nurse which pharmacist to phone to confirm my story, and two I told him if he cost me my one remaining working kidney I would sue him for everything he had and make him never become a doctor. I told him I didn’t owe him a kidney.

I got the medicine I needed the next day.

But why did it have to be such a fight?

Please, if you are a med student, resident, or doctor, never discount what your patients are saying? It’s not suppose to be an adversarial relationship, in which I have to fight for what I need, and you act as a gate keeper, to all the gold.

Why can’t it be a teem effort? Why can’t you believe me when I say I have something rare? Why can’t you see me?

Please try to see me?

If you are a med student, resident or doctor who does believe you’re patients, and works as a teem, thank you.

Never underestimate now much that is appreciated, by Zebra’s like me.

If you are a professor of med students and residents, please teach them that Zebra’s exist?

And if you are a med school curriculum designer, please take that old and horribly wrong adage out? That adage is harmful and it needs to be changed.

How about “If you hear hoof beets, look for horses. If you don’t see horses, look for Zebras.”?

I wrote this in my diary, two months after I was rushed to the hospital because of a severe allergic reaction. As I said before, I started writing in my diary as soon as I woke up from sedation because I wanted to remember the storey. I knew as I got better, I’d become more and more removed from knowing what it was like to be that sick. I wanted hospital staff and family to know what ICU patients experience. I asked for scrap paper, and started writing.

My parents later brought my diary into the hospital.
This was written two months after going to the hospital. It is disjointed, and expresses anger, but I’m keeping it mostly as it was written. If I change it, it will no longer be the view of a recently discharged ICU patient.

Note: Because, I’m not a good speller to begin with some words may be misspelled. I’m not reading it over to change it. It took me all day to gather the courage to write this blog post, and emotionally I just can’t handle rereading it to make corrections at this time.

Note #2: If you know anything about blogging, and how to print off my blog posts to review later, please get in touch to help.

Note #3: This is a very emotional blog to write and update. If these blog posts help you, or if you just like them, please encourage me by telling me you like them, liking them, and tweeting them on twitter? I need to know I’m helping others but doing this, because it will strengthen my ability to keep going.

____

Original Diary Entry, after I got out of the ICU.

What’s it like to be in the ICU?

Not very nice.

When I went into the ICU, my face, neck and body were swollen from a prescription medication.

I wasn’t breathing, and close to death.

A surgeon, placed a child’s breathing tube down my throat. He told me later it was the hardest surgery he had ever done and will never forget it.

While I was there I was totally sedated for 8 days and contracted sepsis and pneumonia.

I crashed on Christmas day and almost died. I was told I got as sick as one could get without dying.

I think of my parents watching “30 people” (my mother’s words) come into the room and the doctor climb on my chest. It must have been difficult. I thought they were trying to kill me and I heard “There’s nothing we can do to fix this. We have to kill her.”

I fought, was tied down, and continued fighting.

Both of my arms were black and purple from fighting so much, exploded veins and multiple IVs.

I had 2 tubes in my mouth, a feeding tube, a tube in my jugular vein (I still look like I was bitten by a vampire, with 3 scabs on my neck), wires taped to my chest and stomach, and a catheter.

I hallucinated about family members I don’t have, a man singing racist songs, the nurses taking piano lessons on inflatable grand pianos, a man who was looking for marbles to fix his piano, my Dad rescuing me by taking the roof off the hospital only to be end up right back were I was, being told I was there because I smoked (I’ve never smoked), and hearing my doctors and nurses talking about putting me in a medical coma because nobody liked me.

Some of them thought that wasn’t right, and some of them thought they were protecting the public and nursing staff by keeping me in a coma forever. The rights of the staff and my right not to be in a coma were discussed.

My brother came in, not wearing a shirt, and told them nobody liked me and asked them to put me in a coma.

I sent racist and horrible mean emails to the staff. My parents divorced, and both of my parents wanted nothing to do with me. The nurses took as long as they could to answer my calls. Every bath thing I did was recored, put in an envelope and sent away. Urine was put into my feeding tube.

None of this happened.

I was under total sedation, couldn’t move and had so many wires and tubes hooked up to me, I couldn’t do anything even if sedation wasn’t preventing my muscles from moving.

I must have been aware on some level I was in a hospital, but not aware enough for it to make any sense.

When I woke up, I couldn’t talk, because of the tubes. I was hallucinating because of delirium, but I didn’t know it.

I saw a coffin, nurses with 3 eyes and other things. To me these things were real. I couldn’t distinguish hallucinations from reality, and didn’t know ICU delirium was even a thing.

I couldn’t see. It was very dark (my mom says it was very bright). I could only see shapes. I saw hair colour, and style not faces. Faces were dark shapes. As that improved, people developed 3 eyes.

I hated my roommate because, he and his visitors shouted obscenities to me. My mom tells me I didn’t have a roommate. On one side was a wall. On the other side as a curtain with an empty bed behind it, yet in my mind, I knew why he was there, who his visitors were, and I heard every conversation they had.

Time had no meaning.

Everything that happened in the past was just as it was happening now. In one moment I could see my brother when we were both children and in the next moment his son would be there. I didn’t even see how that wasn’t possible.

When the tubes were pulled it hurt. It hurt to pull them out. It hurt to swallow. It hurt.

It was difficult to talk. When I asked to go to the bathroom, the nurse said “just a minute, I’ll get you a bedpan”.

I said “It’s jut over there, I can walk”.

She said “No you can’t.”

She was right. I couldn’t sit without support.

Sitting in a chair was exhausting.

When I was transferred to the ward, I saw babies crawling in the snow, an Elvis monkey impersonator sitting in my roommates chair and fireworks on the ceiling. I had entire conversations with people who weren’t there. To me they were there. I kept my roommate awake and was transferred to a private room so I wouldn’t bother anybody else.

Walking was hard but I couldn’t go home until I walked down the hall and back. It took 3 weeks.

It wasn’t until I was home that I was able to distinguish what happened from what I thought happened.

My mother very patiently explained “no there weren’t any pianos in the ICU”, and other things.

I want to got back to back to see what the ICU is really like, not what I thought it was, but it’s not a tourist destination and I don’t want to interfere with the patients now of stop the staff from doing their work.

I have been assured that ICU staff like to see their efforts were successful and their patients got better.

Emotionally, I knew almost as soon as I woke up that the ICU staff saved my life not once but twice.
These people knew nothing about me, but they worked hard to save my life the first time they met me.

But…

I heard and saw them do and say very nasty things about me. And I also felt rage.

Elisabeth Kubler Ross is right – it is possible to believe 2 contradictory things and fully believe both things.

At home I cried about lost abilities, huge gulping sobs, that kind of cry.

I love math. And I have an ability in math that both surprised and impressed my university professors. It was part of how I saw the world. At home my Dad asked me a math question I would have easily done before the ICU. I couldn’t do it. I had to look up how to do it, and I couldn’t understand the explanation of how to do it. I felt like apart of me was taken away.

I like to write. I’ve written 3 unpublished novels and started a fourth. Writting even a sentence tired me out.

Physically, going to the bathroom tired me out so much that I had to sit and rest. By the time I got there I was hyperventilating and my heart was pounding so hard I could feel it by touching my chest (so could my mom).

A specialist doctor I’ve know for at least 20 years said my personality had changed. I went on rants about the slightest thing. I wasn’t very nice on twitter and then went back an deleted all my nasty tweets.

I didn’t care if I hurt people’s feelings and said “I don’t care. You’re an adult. Deal with it.” when I realized I did hurt their feelings.

These are things I never would have done before. I was known for apologizing too often.

It’s now been six weeks (note: I think I counted wrong when I wrote this, but because I wrote 6 weeks in my diary – I decided to keep it in) since i got out of the hospital. I still get angry but direct it as inanimate objects or people who aren’t in the room. That way I’m releasing my anger but I’m not hurting anyone.

I am told that I will get my math and thinking abilities back and eventually I’ll be able to stand for more than 5 minutes without huffing and puffing.

Knowing I have almost died is weird. There has to be a reason I am alive. There has to be some good that comes out of this. But what?

I want to make changes in after the ICU care.

I don’t want med students to see critically ill patients without supervision. They are too sick and people don’t break. They die.

I am still suffering from the changes the med student made to my prescriptions before I came home. I have kidney disease. I took 17 different kinds of medication before this happened. The ICU staff decided on my medication before I left the ICU. A med student in the ward changed it. Even as I argued with him about my need for medications I know how easy it was for him to override me. Sometimes I would agree only because I wanted him to leave so I could go to sleep. He tired me out.

I asked multiple times for him to phone my nephrologist. He refused. He may have over estimated his knowledge but I knew he didn’t know everything. That’s why he’s not a nephrologist. If med student know everything specialists knew specialists would be needed. Did all those doctors with 13 or 14 years of education waste their time and money?

He said 24 urine samples weren’t needed. Than why do I go through the inconvenience of collecting my urine, keeping it in the fridge and trying to find a parking spot at the busiest hospital in the city every 6 months?

He response “why? You can tell kidney function with a blood test?”

My response “I don’t know why I’m not a nephrologist.”

He left.

His medication changes made sleeping very difficult. When I first got him I didn’t sleep for more than 50 minutes at a time. I know. I timed my sleep with my iPhone.

A few days later my mom and I searched the house and found bottled os old medication (months old) and used that.

I’m too sick to drive to the doctor and my mom doesn’t drive.

Ironically I’ll have to wait until I’m healthy to go to my family doctor.

My mom phoned and explained the situation. The doctor phoned me and we had an appointment over the phone. He phoned the pharmacy, my brother picked it up and drove it out to me. An now my medications were fixed.
But how much healthier could I be now, if the med student wasn’t allowed to treat someone who crashed just 5 days before?

He should have had supervision.

Another change I’d like to see is an After the ICU ward. All patients from the ICU who are too healthy to stay int he ICU but too sick to go home could go to the same ward, give each other emotional support, and be treated by doctors that only treat critically ill patients.

I was placed in the cardiac care ward, and rare enough that I got a constant stream of visitors.

“Hi, I’m not your doctor, but I heard you were here and I’d like to talk to you. Is that Ok?”

Yes. I’d like to help you treat those that come after me as long as you don’t harm me. But at least one person there should know how to treat me.

Apparently the last person in that hospital with the same collection of symptoms I had was seen 25 years ago.
I’m not a teaching tool. (Note – I didn’t include this in my diary entry – but I am a Zebra and have been since I was born).

I don’t just break. I can die and almost did twice.
I didn’t belong in a ward with body who knew how to treat me. I new they didn’t read my whole file, because it was huge and they wouldn’t have had the time.

I’d also like the emotional needs of post ICU patients to be addressed. I spent most of an afternoon crying and a social worker was called. She wanted me to be treated by a psychiatrist in the hospital, bt the med student refused. He cam in shortly after she left and said “you don’t need a psychiatrist, do you “, and left.

I spent 3 more weeks in the hospital. I didn’t see a physchiatrist in that time.

One of my nurses told me she thought the med student was wrong about a lot of things but she had to carry out all of his orders and couldn’t say anything or she would be reprimanded.

What a stupid system. She went to university and has more experience that he did.

I’d like to make things different for those who come after me, but making these changes in the hospital, but I don’t know how.

Maybe this is exposure therapy? I’ve been actively avoiding many parts of my ICU experience for months now. (almost 18 months to be exact).

Before I even left the hospital’s general ward, I noticed that the nurses were writing things in a huge blue binder. I asked if I could read it. I was told “no”.

I couldn’t walk very well, I was in a hospital gown, swaying in front of the nurses station, trying to get something, anything for my tremendously sore thought, and the nurse wrote something down in that blue binder before giving me a cough candy.

A cough candy? A tube had been shoved down my swollen allergic throat with force because my airway was completely blocked off, with such force, that I was sure they had used an electric drill to make me a new airway, and all they could offer me for my sore throat was a cough candy? And even then the nurse had to write that down, like she was giving me money for a bank loan. It seemed a bit excessive.

I asked what he was writing down, and he said “no”.
“But that’s not fair. It’s about me.” I stated.
He replied “you have to sign a form.”
That seemed simple enough, but when I asked for the form he denied that too.

I took the cough candy and went back to my room. He may have thought that was the end of it, but it wasn’t. I was determined to know what they were writing about me.
I had no memory of going to the hospital. I didn’t remember that morning when I woke up with a swollen tongue and blocked airway, the ambulance ride or arriving at the hospital completely out cold.

I remembered somebody trying to take my shirt off, being unable to undo the knots that tied it in the back and then saying “never mind we’ll cut it off”. And I remember being relieved, but then later on wondering why they were taking my clothes off.

But…. At that moment when I stood at the nurses desk, swaying back and forth because I didn’t have the balance to stand still, I honestly didn’t remember much, and I wanted desperately to know why I was in the ICU and then later in the ward. I had no idea.

At that point, the clock in my room was still turning backwards, had all sevens and occasionally floated right off the wall.

Here everything was written down in a humongous blue binder, and they wouldn’t let me read it. I don’t even think they would have let me touch it, if I had reached over and tried to do so.

It seemed terribly unfair, but I took the cough candy (the only relieve for my desperately sore throat), and left.
I returned to ask for that file every day. Each time the answer was “no”.

When I was out of the hospital, I asked my doctor how to get the hospital file. He told me how, I downloaded the form, and sent my mother back to the hospital with $20.00 to get the file for me. I have it now, in a huge binder of my own, but I have never read it.

I’ve tried several times, but each time I look at it I burst into tears. I’ve held it, looked at it, cried over it, opened it, and flipped through the pages, but that is as far as I got.

My allergist wants to read it, and I’ve committed to photocopying it, and giving it to him, but I can’t do that either. It just brings up so much fear, hurt and pain when ever I try to do anything with it.

Because I went into the ICU because of a severe allergic reaction, he wants to know exactly what happened. It’s been 2 months since I said I would get it to him, but I just can’t bring myself to photo copy it. Who knew that a binder full of pages could bring so many tears out of one person? I didn’t.

The story of what really happened is in those pages. And I know the story of what happened to me. It didn’t happen. It was all delirium, but it happened to me. To me it was as real as the computer I’m typing this post on, and the desk that it sits on.

But…

So I guess in a way, writing this blog is exposure therapy, because I will eventually tell the story that I can’t bring myself to look at in any way.

Why am I doing this? To help others. To help myself.
Why am I not just writing it in book form or in my diary? I’ve tried. It hasn’t been successful.

Will a blog be any more successful? Well it will prompt me to write more often, and hopefully the encouragement I get from other people (in tweets and comments) will off set the negative emotions I’m feeling even right now.

I sit here will a swollen, and itchy eye, due to contact dermatitis, and conjunctivitis. The eye drops and eye lid cream isn’t working. It’s getting worse. I know I have to photocopy that file and give it to my allergist, if I’m to get better because allergist is afraid to continue the allergy shots until he reads the file. Maybe after writing this blog for a while, I’ll be able to photocopy the file without crying all over the papers, and the photocopy machine.

I hope so.

So why am I doing this? For me. For you. For the ICU patients that come after me.