Posts Tagged ‘hospital’

The person who I’m supposed to put my life in the hands of nearly killed me.

That explains why I felt half alive, half dead. His error caused me to have sepsis, for the second time in less than three months.

He didn’t listen when I asked if it was placed properly. The nurses didn’t listen when I said I was in too much pain for the procedure. No one really listened, until it was almost too late.

I was prepared to die.

The only way I’ve thought of to describe sepsis is an ache unlike any I’ve experienced.

Ever had the flu? The ache is kinda from the inside out. Sepsis is somewhat reverse. The ache starts at the core and then spreads deeper and deeper throughout the body.

There’s a reason some people refer to it as blood poisoning. I felt nausea, and not from pain. Nausea because my blood felt like a substance that didn’t belong in my body, like it was defective, dangerous, and poisoned.

I lost count but I think it was at least seven rounds of strong antibiotics through IV that was administered to me, using an antibiotic that is prescribed and reserved for severest of infections

You know yourself better than anyone, even a doctor knows you. Don’t trust these people who act like paragods, they too are human, and they too can make detrimental mistakes.

Advertisements
After the conclusion of school, K and I agreed that eating disorder treatment was within my best interest.
At first, I thought at most, I’d be attending a residential treatment center. In the week prior to my admission however, it was decided that I’d start out for a few days on the inpatient eating disorder unit. So here I am. Day 1, detached.

I’m starting to have almost chronic (daily) pain from my extreme tightness attributed to Cerebral Palsy.

I keep thinking about what the neurologist said a few weeks ago about how stress seizures are really common in people who have experienced pre-verbal abuse. To sum up, pre-verbal abuse, is abuse that occurs at an age before the child can speak. It makes sense though, considering I barely uttered a word until the age of three anyway.

Image

Growing up I was told that it was speculated that I developed CP as a newborn, probably a few days old. The story developed a bit as I grew older and could better conceptualize ideas. It was said to me that everyone (yes everyone) has clots throughout their body. The body is generally able to rid itself of these clots and there are no repercussions. Yet, since I was a preemie and came into the world at around 6 months, I was very tiny. Any clot that developed in my body could and most likely would be detrimental. That’s exactly what was speculated to have happened.

However, once my mother told me that she didn’t know I had CP until I was 1.5 years old, even though doctors said they mentioned it when I was a baby. It’s ok if you want to read that last sentence again, except no matter how I read it, or type it, it still doesn’t make sense to me.My dad has previously mentioned that doctors told him I COULD have a whole host of ailments, not that I did. I wonder if she’s confusing that with truth. No surprise there.

Might I mention that I went through my first two months of life and the concurring medical records for the first two months I was in the NICU. Every time something neurological was in the record, I paid special attention to it. I was given a battery of tests and had many many conditions charted in these records. I had a lot of diseases ranging from jaundice to severe hyaline,  membrane disease to apnea to bradycardia. You name it, I likely had it. The funny or ironic thing is that nowhere in these charts is there ANY indication of a neurological impairment.

I’m trying to play detective here and put pieces of the puzzle together. Yes, I know I over-analyze a lot of pieces of life a lot of the time. I doubt that will change. You don’t need to be Sherlock Holmes to figure this one out though. Look at this picture:

Image

Do you “see” any neurological issues here. Key word, “see”. A lot of babies have eyes that still need to play catch up with their brain A.K.A. one eye wanders, both eyes can’t focus on the same fixed point at the same time. This is common. Look at my eyes. There’s nothing abnormal there.

I’ve been told I was a handful as a baby (and many times thereafter). I cried often, barely slept. It makes sense for someone to have a sick baby and not want them around and try to hurt them. It also makes sense to have a caregiver get frustrated with a baby. I understand all of that. I’m not blaming anyone, probably because it would almost be Mission Impossible to find out exactly what happened 25 years ago.

Parents fighting all of the time. Annoying baby. Sick baby. Tired. Trying to do anything to make the crying stop. May have already taken it to lesser extremes in the past and resolved “issue” of finicky baby. Too late to go for a car ride to soothe baby. I don’t know, I’m just guessing in the dark here.

I’ve been looking at videos online of ways to improve the symptoms of Cerebral Palsy and am bothered because my mother seeks out every imaginable treatment for my brother and his condition (NF2-Neurofibromatosis Type 2). Why won’t she spend her time seeking treatments for me? My way of life could always be improved. After all, probably everyone’s could.

Maybe I developed CP from shaken baby syndrome, maybe I wasn’t. Either way, I’m still stuck with Cerebral Palsy and stuck looking at surgeries or advances or practices that could have improved my life had my parents sought out appropriate treatment for me as an infant. Why would you want to seek treatment for someone you didn’t want in the first place though?

I just woke up from a dream. I actually figured I’d have some bad dreams going to bed last night, and since I tend not to recall my dreams, didn’t fret too much on it.

I was in a parking lot, waiting to meet my family (first error because I don’t keep in contact with them). As I was waiting for them to arrive, I saw that I needed to lock most of my car doors manually (second mistake because I haven’t even owned that car in three years). As I was doing this, realizing I was in a sketchy neighborhood (third error), I saw a women holding up what appeared to be a gun to a group of people. Then when she shot them, it appeared like they were being tazed. At that point, I wasn’t able to locate my car keys to drive off and basically froze.

That’s when the lady approached me, asked me how old I was. I told her. Her reply? “You’re too young, just a baby, I’m not going to hurt you.” With that, she rested her knife in my car. She stood around, searching through some bag. Not wanting to do anything drastic, and eying the knife, wondering if I should just take it and stab her, I didn’t do anything. Next thing I know she slashes my thigh with the knife and tells me, “You’re going to need to go to the hospital”. I replied, “Nah, I’m okay.” slightly confused, and not actually in pain because the knife wound wasn’t deep enough to require sutures. Suddenly, she continues on, and slashes both sides of my neck, all with a big crowd around. No one did anything. I put my hand to my neck, said “hospital” and woke up.

America’s insurance companies suck in case you haven’t experienced living “in the system” yet. In order to prove that I have a sleep disorder, I had to undergo a sleep study. No big deal right? The catch: going off of my ADHD medication that works magically in three ways:

1. It keeps me awake throughout the day

2. It keeps me calm*

3. It elevates my mood

Pretty awesome medication right? So when the neurologist who was ordering the sleep study told me to go off of it, I told her that would be a problem because I wouldn’t be able to function (thinking I’d just be sleeping all day long).

My theory held true for about two days. I slept 12 hours the first day throughout the day and 15 hours the second day. When the third day rolled around, I was highly energetic. This energy continued and resulted in being hospitalized a few weeks ago for “exhibiting manic-like symptoms”. *I do not have Bipolar Disorder, I have severe ADHD. I stayed in the hospital until the day of my sleep study as I was highly impulsive and unable to predict my behavior. I returned to baseline functioning once I resumed taking the medication.

Yet, I digress because this post is not about a sleep disorder. Since I had an excessive amount of energy that wouldn’t cease, I began to think about ways to calm down immediately upon admission to the hospital. A thought came to me that food was giving me energy, so if I restricted my intake, my energy would be reduced. The following conveys some snapshots of each day. I’ve included how much I walked because I wear a bracelet that I synced upon discharge which tracks my fitness throughout the day in steps and miles.

 

Results from days 1 (consumed approximately 300 calories from time of admission and walked 12 miles) , 2 (consumed approximately 200 calories, walked 4 miles), and 3 (consumed approximately 350 calories and walked 12 miles) of my experiment had me thinking that my theory was off. My energy was still present in high amounts. I wasn’t sleeping unless medication induced and even then, barely. On day 4, my energy slowed down a little and I still managed to walk 5.4 miles. Perhaps this was because I had 30 minutes of sleep the night prior. On Christmas, I walked 5 miles and ate 500 calories. On the first day of Kwanza late Christmas gifts were given by the hospital to the patients. Many patients received stockings with candy, I did not. Some peers were kind enough to share, and I accepted and consumed some candy.  A social worker saw me eating candy and made snide remarks about how I don’t eat food, yet eat candy… not trusting that this was the first significant amount of nutrients I had consumed during my stay. To sum it up, during those six days I consumed in total no more than 2,500 calories. 

It was easy, too easy. I have always struggled with my eating patterns because at my mom’s house it was no junk food allowed whereas at my dad’s it was a free-for-all, no healthy food allowed. When grocery shopping with him, if I picked up something that is considered healthy he would say, “Put that back.” These polar opposites are why I have reason to believe I developed an eating disorder.

Once, I walked into the room when my mom was exercising and she wouldn’t talk to me in detail saying she had 10 seconds left to burn 500 calories. You’re supposed to cool down at the end…

   Luckily my therapist has extensive background in eating disorder treatment. She’s the head of a partial hospitalization program for eating disorders. I know I need help and at the same time, I’m in school and school is the one good thing going for me right now. I’m looking into evening programs. An Eating Disorders Anonymous Meeting just began about one hour from where I live, and I attended the first meeting last week.

During the meeting, people spoke about the origins of their disordered eating. Most people were unable to pinpoint exact time or reasons. I mentioned that I believe mine began at the age of 3. My father would lock my brother and me into cars and hotel rooms so that he could go do what he needed/wanted to do. I presume that when this occurred, I didn’t know when, if at all I would have food. Additionally, the aforementioned circumstances in each home environment play a contributing factor.

At the moment, I’m taking one course in school. My school does this during January so students have the ability to take a course they would not traditionally take during the other terms due to time constraints or other reasons. The course I chose is Philosophy of Simplicity. There is one week in the course where we go on a retreat to a Buddhist temple and practice meditation. Most students will be silent for 36 hours. I’ve chosen to remain silent the entire week.  Apparently in the past, participants have complained about the food served there. The professor summed it up as, “Really, you could go the week without eating and you’ll be fine.”

People laughed. I smirked. I know I can go that long without eating. It actually got easier for me as the days wore on in the hospital. I’m competitive, this seemed like a challenge. I’ve not eaten well since being back at school, eaten too unhealthily and have done many unhealthy behaviors to compensate for the unhealthy food. This seems like the perfect time to restrict. It’s so tempting to continue with my unhealthy ways.

When I mentioned this and other events to my therapist, she was aggravated at people’s absence of awareness when they speak (regarding the food comment by said professor). She thinks this week will be good for me in terms of practicing mindfulness. The other week before my behaviors started to get really out of control, she said, “You don’t want to have an eating disorder. You think Borderline is hard to treat, an eating disorder is harder.” Little did she know that I had begun my down spiral. She had me log my food. This turned out to be really bad because I obsessed even more with what I ate and consequential behaviors when I was constantly reminded of the foods I consumed throughout the day. She had me stop the food logs after noticing this pattern.

This week will be a challenge in practicing mindfulness in a healthy way.

 

I’m not a mouse, a monkey (though I love them), a tiger or a guinea pig. I’m a human, just like most everyone reading this. Sometimes, like today, I feel like a guinea pig. I’m the newest exciting case on the floor, or at least that’s what I gather when a dozen medical professionals continually enter the room to do a rather detailed examination on me. They’re excited, I’m tired.

I’d imagine this is how I entered the world, as brief descriptions have been told to me. I was born 25 years ago, when a viable baby was considered to be 3 lbs. I made the mark, even if it’s a D, because I entered the world at 3lbs, 5oz. I was expected to live, but how well was to be determined. In fact, the doctor came to tell my dad all of the things that could be wrong with having a baby born nearly three months early. My dad’s response?

Doctor talkstoomuch: Your baby may be developmentally delayed, and have a host of diseases. Your baby may be dying right now…

Dad: “Is there anything I can do about it?”

Doctor talkstoomuch: “No.” (shaking his head somberly)

Dad: “Then get back in there and do something rather than talking to me.”

For obvious reasons, namely being stuck under bright lights in a room far away from the conversation, I can’t recap the conversation word-for-word :0).

At the time of my premature birth a colleague of my dad’s had a premature delivery too. The difference? Her baby was a boy. Truth be known, girls develop earlier in the womb. My lungs developed enough to live disconnected from the internal being of my mother, his did not. Same hospital, similar premature circumstances. Yet, for him this meant death, for me it meant life.

What I can do is explain this interesting life I’ve been in for the past 25 years. At the moment, I’m in a large university hospital where everyone from new Residents to distinguished Attendings says and finds something different about me each time they walk into the room.

I even had the pleasure of meeting a fellow patient who was in this room prior to my admission. She walked in, spoke only Spanish, and in my hoarse voice told her I didn’t speak Spanish (in Spanish). You’d think I was in the psych ward or that she did not hear me, because next I know she’s opening my drawers. I found out minutes later that she was looking for her purse. A nurse told me this. The nurse also was surprised that she came in here.

Nurseman: “They didn’t bring your tray yet (two hours after lunch is served)?”

Me: “No. This lady came into my room speaking Spanish opening drawers.”

Nurseman: “She did (in between snickers)?… She shouldn’t have” (begins rummaging through my drawers though I told him only my belongings were in there).

Me: (in my brain) This dude has some explaining to do. My room is being video monitored 24/7 (seizure unit), how come no one saw her on the monitor?

Now that there’s a faculty meeting, maybe I’ll get a break from the Spanish Inquisitioners ( doctors, nurses, stray patient). I really would rather be working. At least then it’s kids asking the questions not wanna-be-know-it-alls, can-I-have-the-good-case people…