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Literature

New Medication 2

In our phone conversation, E explained to me that I will need to take one pill a day and that if I am diligent about this I will get my desired body. She told me that it will take a while and that symptoms will grow slowly. She also told me that any changes the pills do would be permanent. So if I’m unable to access them for a few days, my progress will just stall for a bit. She also recommended that I remove any casts that I have now since I would not want to attempt removing them when symptoms started. So yeah, I’m going to start using this as a log of some kind I guess. I would like to document my experiences becoming a spastic quadriplegic. E also told me that she would help support me. That she will help care for me once I become more disabled. I could not feel any difference after taking my first pill. I still felt no difference during the first week of medication really. But in the second week, I started to notice some more weakness in my legs. I already try and walk as

Literature

Waking Up (1)

As long as I could remember, I wanted to be paralyzed. Something about having working legs and working arms just did not feel right to me. Every night I went to bed hoping and wishing to wake up in the correct body. Every morning I would be disappointed to find my limbs in their normal working order. Then it happened. I woke up and I couldn’t feel my legs. Beyond that, I also felt dizzy, nauseous, and confused. I had no idea what was wrong, but I knew that I was in danger. I’m grateful that I made the decision to call 911 when I did, since I could feel the paralysis quickly spreading in my body. I don’t know exactly what happened next—I passed out before the ambulance arrived.

Literature

New Medication (4)

So, a lot has changed since I last updated everyone. I’ve been taking the pills regularly of course, which has caused my spasms to get worse. A lot worse. Currently, I am unable to stand, much less walk, unaided. In my normal day-to-day life I am able to hobble around the house using my two forearm crutches on most days. I’ve still been seeing an increase in falls (due to my uncontrollable spasms) so my doctor has told me to start using a walker at home more and I am being fitted for my first custom wheelchair. This is a huge step for me in the right direction. I know that as soon as my butt hits the chair I will be much more at peace. The measuring session actually took place a few days ago, and I am expecting to receive my chair later today. I got a high quality rigid frame manual chair. It’s got a high back, black push rims, and a white body. My doctor told me that I might even qualify for power-assisted wheels if my condition worsens. What my doctor doesn’t know, is that it

Literature

Waking Up (7)

It’s been a few days since my transfer here to long term care. In this time I have been able to work on my sitting in bed, and at the side of the bed with my physical therapist. I am excited for today because we are going to try and transfer me into my first wheelchair!! Since I arrived I have been eyeing the large tilt-in-space chair with excitement. I remember before I woke up paralyzed how jealous I was of quadriplegics. I wished to be in their place more than anything and being able to fulfill that wish has given me so much joy. My day starts the same as any other, by mouthing good morning to Maddie and getting deep suctioned. Next week I am supposed to get my passing valve which should allow me to speak (fingers crossed), but for now I have to rely on mouthing, blinking, and a communication board. Maddie then checks to make sure that I haven’t messed my diaper in my sleep and readjusts my paralyzed body. She then brings an over-bed table with my communication board on it. I am now

Literature

Waking Up (4)

At this point the days had started to blur together. I received my trache and other tubes a few days ago, but I could already tell that my days were starting to become more routine. Time doesn’t really exist in the ICU, so I can’t tell you when exactly my days started but they typically went something like this: I am awoken to my nurse walking into my room. I mouth good morning to her and she starts the beginning of my care. Typically that means that begins with a deep suctioning since I still have no diaphragm function. I absolutely hate the deep suctioning since it means that I will be off of the vent while it’s happening. It is pretty scary to not be able to breathe and be so dependent on a machine. However, I know that that is part of being a quad and I am more than happy to watch my chest rise and fall with the machine. After my airways have been cleared out enough, the nurse empties my catheter bag. Since I am starting to become a lot more stable, we have decided to try and start

Literature

Medication (5)

My ventilator gently pushed air into me. It's sound and rhythm comfort me greatly, especially knowing that it's responsible for keeping me alive. I love being so dependent that I cannot even breathe without assistance. I watch every day as my caretakers slowly move all of my limbs and suction my trache. I love that I am unable to do any of this for myself, all I can do is move my eyes. I communicate using an iPad above my head that has eye-gaze technology hooked up to it. If I were to try and talk all that would come out is a moan (if that) since I'm almost entirely locked into my body. The only movements that I have are spasms, which are completely out of control and attempt to cause contractures in my limbs. At this point, we have managed to keep the contractures away from everywhere except my hands, which are balled up around my hand braces. Let me explain to you how we got here though since a lot has changed. I was using my walker when I left off last time. That quickly didn't

Literature

Waking up (6)

I have been in the ICU for what seems like forever and I’m starting to hate it. Meaning, that when my nurse walked in yesterday and told me that they have found a facility to place me in for rehab I didn’t even need my communication board to show her how excited I was. Everything is moving very quickly it seems, as I am being transferred there today. It seems that they are desperate for ICU beds and I have been deemed stable enough to move to long-term care. My day started much the same as any other. My respiratory therapist deep suctioned me and switched my vent settings around. I have been working very hard on regaining my diaphragm functions so as not to be continuously tied to the vent. So far, we have found that I am able to maintain lessened settings during the day, but I still require total assistance at night. I have been told that this is expected since my initial spinal column swelling went up so high. Over time though I can tell that the swelling has decreased. I know this

Literature

Waking up (3)

I was taken down to MRI later that day. I know that most people would be terrified and anxious to be in my position, but I was at peace. I watched as the techs and nurses transferred me onto the MRI table. I saw them reposition my arms and a respiratory therapist walked up to me and said, “Hi there, I’m going to switch your ventilator to the one that can go into the MRI room with you, ok?” I blinked twice. The RT then swiftly detached the tubing from the ET tube and re-connected a new circuit of vent tubing. Even though I was only off of the ventilator for less than a second, it felt like a life time. In that moment, I could truly feel how dependent I was. It felt as though there was a band across my chest and I couldn’t breathe no matter how hard I tried. After the MRI I was taken back to my room in the ICU. I watched again as my nurses transferred me over to my bed. Even though I hadn’t done any of the physical work, I felt exhausted and quickly fell asleep. I woke up a couple of