After waking up this morning and transferring into my manual wheelchair, I feel like I just ran a marathon. If I could run a marathon. The weather has been boiling hot all week and today is no exception. The heat is aggravating my MS (Multiple Sclerosis) symptoms, fatiguing me and wearing me out quickly. Everything I do is at a turtle pace and I'm feeling like an out-of-shape two-toed sloth.
After taking a break and petting my cat Bootsy in my lap, I roll into the kitchen to grab some ice water because I feel like I ran a 4k. Just standing up to reach for some ice in the freezer feels like I'm climbing Mount Baker and chiseling some ice from a glacier. I haven't felt this worn out from doing everyday tasks in a long time.
I snatch some Cheez-Its and crunchy granola bars from the lowered kitchen shelves and slowly push myself into the living room in front of my big-screen TV. I finish my "breakfast”, cool off from the mountain ice water, and fall asleep.
I wake up to Judge Judy screaming "Shut up!" while she pretends to zip her lips with her fingers. I can't help but snicker and can't believe how long I slept. This heat is getting unbearable and making my life more difficult. I really hope I have enough stamina to finish this day.
I have to figure out a plan of action for tonight so I can conserve the most energy while I'm dealing with this crap. King 5 weather says sunny and almost 95°. I'm baking in my house right now and need to get some air circulating in here.
My arms feel like floppy wet noodles and I'm struggling to roll over to the side porch door to open it all the way. Bootsy zips past me to go outside and get out of the sauna. The warm breeze flows into my apartment, making the heat more bearable. I smell the fishy water from the canal and hear the seagulls fighting with the crows.
I go to the fridge and reach in for a chilled bottle of Lipton green tea to quench my thirst. Even doing these small tasks is pooping me out; I'm starting to worry my MS symptoms are acting up more than usual. I really hate dealing with this disease and how it affects my body. So frustrating. I know from experience that I just need to relax and stay calm until dusk when the blistering sun sets over the Olympics. Otherwise my symptoms will get even worse.
Until then, I'm going to eat dinner and just try to take it easy. There's no way I'm cooking dinner tonight and wasting my valuable energy. So I reach into the fridge for beef jerky and a banana, then go over to the kitchen table by the open side porch door.
As I watch the boats head back to Lake Union, I worry about how I'm going to get myself into bed tonight. I'll have to be extra careful and make sure I have my phone on me in case something goes wrong, like if I fall on the floor during the transfer.
As soon as the sun goes down, I know this is the best time to get ready for bed. I'm feeling a little better since I ate and the weather cooled down. Slowly, I head to the bathroom. I drank way too much green tea, so now I really need to take a piss.
After parking myself in front of the toilet, I lock the brakes so my chair stays put. Then, using the arms of the chair, I lift myself to a standing position. Using every ounce of energy and every muscle in my body, I finally stand up. I can barely stand. I keep rocking back and forth like I am a drunk sailor on a ship.
I need to hurry, so I quickly start letting everything out. Still rocking back and forth, I barely hit the center of the toilet and start peeing all over the floor. When I can’t stand anymore, I fall back into my chair, peeing all over myself. I go over to the sink to wash off my hands and just splash water all over my face, cleaning myself off for the night. Screw brushing my teeth.
Going back into the kitchen, I see Bootsy run in the side door straight to her food. I lock all my doors and now I'm ready to get into bed for the evening, something I've dreaded doing all day. In my room, I place myself next to my hospital bed. I'm not going to bother taking off my pee-soaked clothes or shoes because I need every ounce of remaining energy.
Locking the wheels once again, I lift the side arm of the chair so I can transfer to my bed. Then I unlock the legs of the chair and put my feet down on the hardwood floor to sturdy myself. I got my wire loop leg-lifter ready just in case, and double check that my phone is in my pocket.
NOW I'm ready to go.
The thin, slick wooden transfer board is still sitting on the bed from this morning, so I shove it under my butt to make a little wood slide to my bed. I put my fist down on the bed and brace myself for the transfer. Taking a deep breath, I tell myself 'I can do this'. I use my free arm to push myself off the other wheelchair armrest.
"1-2-3," I say out loud. Every time I slide an inch toward the bed, I have to take a long break. Finally, after an hour of meticulous and careful sliding, I safely land on the bed.
Now I sit at the edge of my bed, breathing heavy and sweating. The hardest part is over, but I still need to get my legs up onto the bed. I put the head of the hospital bed up and unlock the brakes of my chair to get it out of the way. I grab my leg-lifter, putting the loop around my foot so I can use my arms to help lift my legs. There's no way I can lift my legs on their own because I'm so tired. I lay back on the bed, and with all the energy I have left, I get both legs on the bed and finish up with the transfer. Hell yes!
As I lay in bed breathing a sigh of relief, Bootsy jumps into my bed and sits down on my stomach to congratulate me. As I pet her, I worry again about how my symptoms are getting worse. How hard it was to get through the day today. Then I drift off to sleep.
When I wake up in the morning, there is something seriously wrong with me. I can’t move my legs at all, and I can barely move my arms. No matter how hard I try or think about it, my legs aren't budging. My brain isn't communicating to my legs to move anymore. I am freak out wondering if I'm having another MS attack. If I am, then this one is worse than my first one when I had temporary paralysis of the whole left side of my body. I don't know what I can to do with the little movement I have so I reach in my pocket and grab my phone to call my sister Holly.
"Hello?"
"Holly! There's something wrong with me! I can't move my legs and I can barely reach in my pocket to get my phone. I've been struggling all week and yesterday was bad."
"Whoa, whoa, slow down. I'm sure you're fine. Just relax."
"Relax? I can't move! There's no way I'll be able to get out bed today. I think I'm having another attack. I need your help."
"Okay, okay. Calm down. I'll come over right away."
When she comes from work, we decide to try to get me up into the manual chair. She lifts my lifeless legs off the mattress, putting my feet on the hardwood floor and sitting me on the edge of the bed.
"Why are you still wearing your shoes?" she asks.
As I sit there, I can't keep myself up with my arms and I slowly fall sideways back into bed. There is no use in trying anymore and we both know it. So she lays me back into bed and lifts my legs up while we think about the next move.
"I think you need to call your doctor and see what they tell you to do," she says.
At that moment of hard realization, I start to cry. Holly gives me a big comforting hug which makes me cry even harder.
"Why is this happening to me, Holls? Why me? It's not fair!" Tears pour down my face.
Tearing up and sniffling herself, Holly consoles me. "It's going to be okay, John. Don't worry. They will give you the help you need right now."
Just as she says that, Bootsy jumps up on the bed and sits down on the other side of me so I can pet her. Making us both smile because I think she senses something is wrong as well. She seems to have a unknown fifth dimensional power, a sixth sense.
Finally settling down from the harsh realization, I call my neurologist. But I can't get through to the doctor. Begging and pleading doesn’t work either. Doesn't he understand this is an emergency? I really need some guidance right now, but it's like he doesn't care. What's the point of having a neurologist? He's not even willing to help me out during my time of need.
Eventually, after an hour, his nurse practitioner gets on the phone and I urgently tell her what's happening to me.
"I think it's best if you go to the hospital and get checked out," she says, "We need to run some tests and see what's going on with you. Just call 911 and tell them you need to go to the ER."
Hanging up the phone in frustration, I am just so angry, but I have no choice. I am bound to go to the hospital. So I call 911 like she told me to, and then wait for the ambulance to arrive.
I hear the sirens getting louder and louder as they get closer to the house. Suddenly at the door there is a loud knock, accompanied with "Fire Department!" Bootsy runs off the bed into the bathroom. The whole Fire Department, including 3 EMTs, enter my room with a large gurney. They take my vitals, and then four of the bigger firemen lift me off the bed onto the gurney. They strap me in tight.
With tears in my eyes, I say goodbye to Holly as they push me out to the ambulance. "I'll come and visit you later, John," Holly shouts when we leave the front door. "Don't worry, you're going to be fine."
My nosey neighbor on the front porch is watching as they lift and squeeze me inside the small AMS truck. One of the EMTs urgently puts a one-inch IV needle in my hand because she says I need fluids right away. Above her, hanging from the ceiling, is a bag of saline water that the IV tube is attached to. The situation is getting really serious now, and I feel frightened and scared. This is the first time I've been in an ambulance, and everything sucks right now. I'm going to the hospital for God knows how long. Who knows when I'll see Bootsy again.
After finishing up with me she hits the front window to signal the driver. He turns the sirens on and we head to the ER. Putting his foot on the gas, going faster, the driver swerves in and out of traffic. The EMT touches my hand. "Your heart rate is high," she says. "Calm down. Take a couple of deep breaths and just breathe."
I don’t want to believe this is happening to me. Not again.
The ambulance gets me to the ER in no time and they start unloading me out of the back. The saline bag shakes over me as they put me on the sidewalk in front of the hospital's entrance. As they rush me through the halls, the bright overhead lights burn my eyeballs and make me realize I'm in the hospital again. This sucks. We get to the first open room and the EMTs transfer me on to another uncomfortable hospital bed.
"Good luck, John. Our job is done. Somebody should see you shortly," she tells me. They leave. Now I'm alone in a cramped office at the end of the hallway.
I try to move my legs and arms, but there's little communication from my brain still and almost impossible to move most of my extremities. My arms move a little, but my legs aren't budging. This is really freaking me out and never been so scared in my life. My progression is getting worse. All I think about is getting steroids, hoping the infusion will relieve my symptoms.
One of the nurses comes into my room and takes my vitals including my blood pressure and heart rate, both of which are still high. She gets me a Sprite and some peanut butter Ritz Bits, then tells me “We’re swamped" and it may be a while. Not what you want to hear when you need help.
After an hour, the lead ER Doc finally shows up and starts her examination. Stretches out my arms and tests my sensation with a mini hammer that's in the pocket of her lab coat. "Why did you come and see us today John?" the ER doctor asks.
"I'm pretty sure I'm having an MS attack. I can't move my legs and my arms are weak. My neurologist told me to come here to get some help. I just want some steroids so I can feel better."
"Okay. Well try to relax because we're waiting for an ICU unit to open up. You'll be getting other doctors including a new neurologist once you're on that floor. I did put an order for an MRI, so Radiology will come by and get you soon so we can get started with your evaluation. Unfortunately, I can't get your steroid treatment started because I don't have authorization. You're going to have to wait until you get to the ICU."
"Jesus Christ, that sucks. Can't you see I need help now? And wait a minute. Did you say I'll be getting a new neurologist? What about the one I already have?"
"You'll be assigned to one of our wonderful neurologists here at this hospital campus. Don't worry, you'll be in good hands. In the meantime, please make yourself comfortable because I can't give you an ETA yet. Press the call button if you need anything."
This seriously sucks!
I'm not going to get help for a while. To top it off, my damn neurologist is not even going to help me out. I feel betrayed in my time of need. What a numbskull.
I grab my Motorola flip phone on the table next to my bed and call Holly to let her know what's going on.
"What the hell, John. What are you going to do?"
"There’s nothing I can do! I just have to sit here like a useless box of rocks and wait in this lousy hard bed."
"Calm down, John. I'm sure a room will open up soon. I'll come visit you after work."
Two young lab technicians knock on my door, ready to escort me.
"Okay. Thanks, Holls. I got to run. Radiology just came by. I'm getting an MRI. See you later." I close my phone.
One of the technicians unlocks my bed and they start pushing me through the halls. When we get to the radiology lab, I tell them I won't be able to transfer, so we wait an extra half-hour for a power Hoyer lift to get me on the MRI bed. I feel so helpless not being able to transfer and it's so painstakingly frustrating. After an hour of listening to loud clicks and being claustrophobic, they finish the test and Hoyer me back to my shitty bed. Taking me back to my little dungeon room in the ER.
They gave me mushy mac and cheese with tater tots for dinner, and then around 8 o’clock, Holly comes by to see me and to drop off my manual chair and medications. She’s also got magazines, Lipton Blue Label, and some Reese's Peanut Butter Cups for me. Bootsy is staying with her and her cat Tony. She shows me some pictures of them on her fancy new iPhone. We call Mom and Dad in Cleveland and give them the lowdown. Pops wants to talk to the hospital administrator, but I tell him not to embarrass me and there's nothing he'll be able to do. At 10 o’clock, visiting hours end.
"I'll come by as soon as I can, John. Hang in there, Slugger," she tells me as she leaves.
I'm stuck in the ER for the night all alone again, reading Time Magazine and counting holes in the white ceiling tiles. Wondering when I'm going to get treatment for my worst "MS Attack" ever.
I can't sleep. The light above the sink is on and my ass is hurting me. Plus, I have to pee. I've got no clue how I'm going to do that since I can't get up. I press the red call button.
"How can I help you, John?" the night nurse asks me, entering the room.
"My bum hurts from this bed and I have to take a piss really bad. Not sure how I'll do that. Any suggestions?"
"Let me grab you a urinal so you can pee in that. I’ll bring a couple extra pillows too. I'll be right back."
She returns and gives me a clear plastic portable urinal to pee in, and then rearranges the pillows by my butt to relieve the pressure. "So you think that urinal will work for you?" she asks.
"I have no other option. I'll try to make it happen."
"I'll be right across the hall. Just give me a holler if you need help."
I unbutton my pants and grab the urinal sitting next to me. This is so annoying that I can't just get up to pee. At least I have some dexterity with my hands still. I hold down my pants with one hand and hold the urinal with the other while I relieve myself until it's filled with warm yellow fluid. I carefully lift the urinal upward when I finish so I don't spill piss all over me again.
"I'm done!" I yell, holding the urinal by the handle.
She rushes in, grabs the handle, dumps the piss in the toilet, and then washes the urinal out. Then she put it on the table. "Just in case you need it later."
Christ.
"So, are there any updates on my ICU room?" I ask. "What's going on?"
"I just got off the phone with them. They said maybe tomorrow morning at 9 a.m."
"9 a.m.! That's ridiculous. I've been here almost 24 hours. Can't you see I'm struggling? I'm pissing in plastic bottles, for Christ's sake. Let me talk to my ER doctor."
"She isn't here anymore. And the other on-call doctor is busy right now. There is nothing that can be done anyways until your room is open. Please calm down."
"How can I calm down when I'm like this? Damn it!"
The nurse leaves with her head down, and I lay back to try to get some rest. I shrug my shoulders and settle down. I don't want to make my symptoms even worse by stressing out.
At 7 a.m. sharp another nurse comes in and checks my blood pressure. It's finally back to normal. He also gives me a banana, an apple, and cheese spread with Club crackers. My room is finally ready at 9:30 a.m. One of the ICU nurses comes by to transport me.
"Hello. My name is Ken. I'll be taking you upstairs."
"Thank God! Let's get out of here."
When I got up to the ICU, I feel like I am in a whole other world. Everything is more organized with many nurses and doctors walking up and down the halls. Taking care of business. We get to my room, and it's humongous compared to my ER room. I even have a window with a view of Mount Rainier. Ken pushes my tiny ER bed next to a much bigger hospital bed. "I need help for a transfer!" he yells.
Two nurses stand behind me. Ken is at the base of my bed. They lift the bed sheet under me, sliding me safely over.
"Thanks guys. I'll take it from here," Ken tells them. He comes over to me and says, "I got good news for you, John. We got you an air mattress."
He presses a button on the side of the bed and a small fan starts filling up the mattress with air. My body floats like I'm on a cloud at the base of the mountain. That's more like it! Ken takes my blood pressure and adds a fresh bag of fluids to my IV tubing. He rolls the wheeled hospital side table close to me. "The ICU doctor will see you shortly," he says. "The TV remote is on the table, along with the lunch and dinner menu. I'll come back later and get your order."
"Thanks, Ken."
For a second there I felt like I was living large, but the reality is I'm still in the hospital. There's no glamour being here. I just need to talk to a doctor, for Christ's sake. I need someone that can heal me and get me back to normal. Also, I don't understand why this is happening to me. I've been taking my Tysabri, a disease-modifying drug, and living a healthy lifestyle. I need answers.
The ICU doctor comes into my room and does a complete exam while he introduces himself and tells me what's going on with my care. He's in charge of me while I'm in ICU, and also of the steroids. He wants to keep me in observation for a few more days. Something I don't want to hear.
"Our head neurologist will see you soon to answer your questions and discuss your MRI. Just relax and get some lunch. You're in good hands now," the ICU doctor tells me before he leaves.
Ken storms in, pushing an IV pump stand with a thousand CC bags dangling from the top. "What's up John? I got you prednisone,” he says. “Know what you want for lunch?"
He puts the IV pump next to my bed and sets everything up for my infusion. I browse the menu and order a turkey sandwich, BBQ Baked Lays, and a fruit salad.
"Thanks, Ken," I tell him with my head down.
As I'm eating lunch and getting treatment, another doctor walks into my room, pushing his workstation with a laptop.
"Hello John. I'm the hospital neurologist. I'll be going over the MRI with you. I can answer any of your questions."
"Okay. Doc, can you tell me why this happened to me? I've been taking my Tysabri, eating right, and doing physical therapy. I just don't understand." I beg for answers.
"Unfortunately, I cannot tell you exactly WHY. Multiple sclerosis is unpredictable and sometimes unexplainable. However, I did notice something on your MRI that may help explain why your legs are feeling weak."
He turns the computer around and my brain image is plastered on the screen. Then he circles a light-colored area around my spinal cord caused by the dye. He also circles an area on the left side of my brain.
"I compared your images to others that were in the system. I notice the lesions around your spinal cord have gotten larger. This may explain why your symptoms are acting up."
"Is there anything you can do to heal those lesions in my brain and spinal cord? Maybe you can make them smaller?" I already know the answer to the questions, but I thought I'd ask him anyways. He's fresh blood. Maybe he's got a different perspective on the disease.
"Unfortunately, there isn't a cure for MS right now. We have no way to fix the lesions that are already there. We can just hope your body responds well to the steroids. Then with some rehabilitation we can get you back home."
Just what I thought. It was worth a shot to ask him, though. Just for once I want to hear something else. Something optimistic, so I know I won't become permanently disabled. Or at least get me a wonder drug that'll fix the lesions, so I'll be able to continue enjoying my life. Driving my Nissan Frontier or hiking in Mount Rainier. But the disease progression is getting worse and my nightmare is coming true. There's nothing any MS neurologist can do about it. (Which makes me wonder: why would you want to become an MS neurologist?)
This is the biggest annoyance of living with MS. All the "not knowing" and "what if's" add up and always leave you wondering. You have to learn how to live and adapt with MS constantly. A non-stop battle juggling all the irritations and frustrations ALL the time. But I'm sick of juggling all these emotions every day. I'm not sure how much more of this I can take.
Now I'm being faced with MS progression head-on because I have no choice. I have to recover from this horrible attack and deal with another setback. What I DO know is I want to get back home ASAP. Pet my little Bootsy.
"Rehab, huh."
"Yes. That will be after your observation time here at ICU. We will eventually transfer you to the rehab hospital. I'll check back with you in a couple days after the steroids fully settle in, then we'll work on a plan to get you home."
The doctor leaves. I continue eating my lunch. I'm too angry and upset to talk about this any longer. The doc just dropped an atomic bombshell on me and I need to take it all in. I have such a long road ahead of me. MS is disrupting my life putting me in check, but I'm not going to let the disease slow me down. After treatment I'm going to do everything I can to take that road and get the hell out of here.
Author: John Mistur
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