The last time you put on my shoes for the day, you had a fairly typical day staying at home and hanging around my apartment. Although I do have a lot of days where I don’t leave the apartment, just like everyone else I have to go out into the world to do things like run errands, buy groceries, and go to doctor’s appointments. These simple, everyday tasks are something most people do without the slightest effort, but for someone who is physically disabled, these endeavors must be carefully orchestrated. So today you are going to put on a different pair of my shoes, as I walk you through an average day for me when I have a doctor’s appointment. This is the exact way that my day transpired last Friday.
I wake up to my night nurse preparing to give me my morning nebulizer treatment to open up my breathing. She then proceeds to clean around my trache tube and give me chest percussion treatment to clear out my lungs. I try to remain asleep, but I am pretty much awake the entire time.
My day nurse arrives and receives the report from the night nurse before immediately coming in to dress my wounds, wash me up, and get me dressed before my lift helper comes at 8:45a.m. I get a dose of Fentanyl at 8:30a.m. so that it can start working before we transfer. The lifter arrives on time, and I get up into my wheelchair. I have to sit up slowly so that my back muscles can stretch and warm up for the day, but after about 15 minutes I am finally up, sitting in my wheelchair.
I move out to my living room to have breakfast. To make sure my wheelchair doesn’t die on me, I plug it in to charge for a while. My nurse feeds me donuts, banana with peanut butter, milk, and orange juice, and then I take my morning medications. I am supposed to check-in at the hospital at noon, which means I need to leave by 10:30 a.m. to get there on time. I quickly check on the website and glance at my email before packing things up to leave. I run through my mental checklist for leaving the house: suction catheters, suction machine charged and packed, pain medications, wallet, phone, keys, etc. I take another dose of Fentanyl as we head out the door.
We lock my apartment door behind us, as my nurse and I start the long walk down the sidewalk to my van. We have to move pretty slowly, because I am nursing a sore back and the sidewalk is bumpy. We eventually reach the van, get me loaded, and get on the road.
After stopping to get gas for my gas guzzling Drotarcade, we hit the highway and drive to the hospital.
There is a lot of construction at the hospital, and you have to use their free valet service. We ask the parking attendant where to stall the van while I get unloaded, and after thinking for a minute he points to a vacant spot. It takes a few minutes to get me up, unlocked, and back on the ground, but we do reach our goal and walk into the hospital.
We find the outpatient registration room fairly easily, and we take a number and wait for our turn. After a 15 minute wait, my name is called. I spend the next 20 minutes giving them my insurance information, verifying my address and such, and signing off on all of their pointless privacy statements. After completing all of the corporate bureaucracy, the registration lady shows us to the wound clinic. Due to all of the construction in the hospital, this is quite a jaunt, and by the time we get there my back is pretty sore from all of the bumps.
We reach the wound clinic and take a seat after giving the receptionist my name. I take another dose of Fentanyl to help my back, and after a short wait a nurse calls me back to the exam room. I spend the next 20 minutes having my vitals taken, telling them the long list of medications I am on, and giving them my medical history. Finally though, it is time to transfer to the examination table and wait for the doctor.
The doctor enters the room about 10 minutes later and greets us as he scrubs up to examine my wounds. He looks me over, and then he begins assessing the wound on my right hip which is the real reason I am there. He pokes and prods it as gently as he can, but the wound is so tender that I jump in pain several times. He even hits bone once while he is trying to measure how deep the wound is, which makes me cry out in pain. After what seems like forever, he is done torturing me, and he tells us what he has found. The wound is deep, but it is healthy with no signs of infection. He prescribes a new care plan that involves packing the wound every other day with special cloth. This is a painful process, but the wound is healthy and I don’t need to worry about having it surgically repaired, so I can’t complain. I say thank you, and the doctor leaves while the nurses redress my wounds before helping me back into my wheelchair.
Before we can leave, my nurse and I have to make sure that the doctor writes up an order that my homecare nurses can follow to the letter, and then have them fax that care plan to CareStaf. We also have to have the doctor write up a list of medical supplies I will need to follow the new care plan, so that my medical supply company will bill my insurance provider. We then have that letter faxed to my supply company before finally being able to leave.
We begin the long walk through the labyrinth of construction and blocked off hallways to get back to the main entrance. Remember now, that my nurse is helping to drive me while also carrying my suction machine and her purse, which is a lot of work on a 3/4 of a mile trek. She is a trooper though, and we eventually make it to the valet and give him our ticket.
We load me up into the van, but before we can leave I need a trache suction. This requires my nurse to break open one of my suction kits, keep one hand sterile, and manage to turn on the suction machine within the tiny, cramped space in my van. It’s no easy feat, but my nurses are pros, and she does fine. We get everything packed back up, and we start heading for our next stop, the pharmacy.
We arrive at the pharmacy, and supposedly they have all 3 of my prescriptions ready. If history is any indication however, the chances of them having them all filled and correct is about 50:50. The gods are smiling upon me today though, because I actually receive the medications I ordered. This makes me happy, which temporarily distracts me from the growing pain in my back. I am starting to feel all of the bouncing around from riding in the car. We are almost done though, as we now are heading home.
We pull in to my parking space, and my nurse unlocks my wheelchair and unloads me. She gets me inside, and then she has to go back to the van to grab my suction machine, prescriptions, and lock up.
I really want my next dose of Fentanyl, but I have to eat something first because I transfer into bed at 4p.m. for at least 3 hours, and I can’t go that long without food. I quickly choke down some lunch, and I finally get my painkiller. My evening nurse arrives on time, and we transfer me into bed. The lift goes well, but my back is so tender and sore from the day that it is pretty painful. When I hit the bed, I just lay there and breathe for a few minutes.
My nurse gets me positioned and comfortable in bed, and I ask him to see if my lifter can come get me up at 8p.m. instead of 7p.m., so that I can rest my body longer. I fall asleep quickly after all of the activity from this afternoon.
I wake up and call out for my nurse to bring me another dose of Fentanyl. He brings it in and lets me know that my lifter is coming at 8p.m. I go back to sleep.
My nurse wakes me up, and he assists me in going to the bathroom. I then receive a breathing treatment to open my lungs for the night. My back is still pretty sore, and I would much rather stay in bed, but I have to get up to eat, drink, and take my nightly medications. My lifter comes on time, and we transfer me back into my wheelchair.
Due to my back pain, it takes me about 20 minutes to sit all the way up. I eventually make it though, and my nurse drives me out to the living room.
I have some dinner and watch some television. After finishing my meal, I take my final dose of Fentanyl for the 24 hour period. I’m too sore and tired to do much work, so I just surf the web, waste time on Facebook, and watch Netflix on my Chromecast for most of the evening.
I have a small snack before I take my nightly medications. I take an extra painkiller and a muscle relaxer to help me sleep through my back pain.
My lift into bed is not until midnight, but my body is beat, so I move into my room and recline back in my wheelchair until then. At 11:55p.m. I take a dose of Fentanyl.
My lifter arrives, and I endure the final painful transfer for the day. My nurse begins my night care, which involves chest percussion treatment, a breathing treatment, and getting undressed and such. We finally get done with everything at around 2a.m. My nurse gives me a dose of Fentanyl and gets me comfortable and ready to sleep for the night. I fall asleep watching Sports Center.
From this point on I am sleeping, except when I wake up every 2 hours to receive a dose of Fentanyl. I will note that although I am only going through this 24 hour period, the pain and soreness in my back from the day’s events will bother me for at least 3 days.
This is an average day for me when I have one errand to run and a doctor’s appointment. These 2 mundane, simple tasks took me almost 5 hours outside of my apartment. They also required that I be up in my wheelchair almost 4 hours more than I typically would be. What is really telling about how different life as a disabled person is though, is that this was a smooth, successful trip for me. Despite the fact that I got poked and prodded by a doctor, had my body beaten up riding in the van all day, and was too tired to work that night, I was completely happy with how things went. There were no major problems (aside from the construction at the hospital), and I got everything done that I had wanted to. So even though this may seem like a nightmare of a day for an able-bodied individual, for me this was just a normal, if not better than normal, Friday. The next time you get bent out of shape because traffic made your errands take longer or let having a headache ruin your whole day, think about how much harder your day could have been. It is all about maintaining perspective and having the right expectations for your day. Try to keep this in mind before you mark the day as a win or a loss. You may find that you have a lot more wins than you think you do, and although winning isn’t everything, it sure does make you happy.