Be Your Own Advocate

Sep 22, 2021

It’s 11:06 a.m., and I’m exhausted. I started my day bright and early with physical therapy at 8:00 a.m. I met with the wheelchair clinic, and modifications will be made to my wheelchair; including new tires, seat cushion, a new foot rest, and much more.

After I met with them, both my physical therapists brought me to the gym. We worked on core exercises. As I sit on the gray mat, I look out the window. The gym overlooks the water. You can see boats in the distance, varying in size.

Each therapy session lasts for an hour. When the hour was up, I transferred back in my chair, rolled to the elevator to go back to my room.

As I roll, tears roll down my face. The pain in my back is pulsating, specifically where the surgeon did the work. Both of my physical therapists see I’m struggling. They help me transfer back into bed. One of my therapists swings my legs into bed; my legs feel heavy and have limited sensation.

Tears roll down my face once again; I can’t stop crying. They prop me up with pillows. I chuckle as it looks like I’m cocooned in pillows.

One of my physical therapists grabs my nurse. My other therapist has his hand on my shoulder, telling me he’s sorry the pain is so brutal. Both therapists have so much compassion, which means a lot to me.

My nurse comes in and brings me pain medication. This particular nurse is someone I have a close relationship with. She gives me the med, tells me to hang in there and that she will come back to check in on me soon. I feel grateful I have a team who truly cares.

In an hour I have occupational therapy, so in the meantime I can rest, allowing the pain medication to take full effect.

It’s 10:00 a.m. when my occupational therapist comes into my room. She’s smiling, and excited to see me. I would describe her as a sweet soul. Very upbeat with a contagious laugh.

She asks me what I want to do, and I ask if I can shower and practice putting on my back brace independently. At the moment, I’m on spinal precautions, which means I’m unable to bend, lift, or twist.

With a big smile, she says, “Of course.” She helps me gather everything I need to shower. As I shower, she and I chat, talking about anything and everything.

As the hot water runs through my hair, the pain creeps up. I start to cry. I can’t hold back the tears. My therapist tells me to let it out, reminding me it’s okay to cry. She keeps apologizing for how much pain I’m in. I thank her for listening and being so supportive.

We continue to chat, talking about how I’m supposed to be discharged next week. We both agree that I’m not ready from a medical standpoint. My pain isn’t managed, and we still have to address the supra-pubic catheter being surgically placed.

A supra-pubic catheter is a tube inserted into the bladder to drain urine for those who aren’t able to urinate on their own. I am unable to urinate on my own, and my providers felt it was best to have this placed to help my quality of life. Originally, this tube was supposed to be placed during this most recent surgery; however, there was a miscommunication and it was never placed.

I share with my therapist that I don’t feel comfortable being discharged without my pain being managed, and addressing the supra-pubic catheter placement. She completely agrees with me.

Every week, a team meets to discuss my progress. I ask my therapist if she can advocate for me; with a big smile, she says, “Of course.” She reminds me that both of my doctors will advocate for me, as well as my nurse and physical therapists.

I turn off the water, and she helps me towel dry my body. As she helps me, we continue to chat about random things, keeping my mind off the pain. I put on my sports bra and tank top. She hands me my zebra printed back brace, and I put it on independently. To me this is a big accomplishment, as it’s difficult to put on, and I usually need help with it.

I transfer into my wheelchair and roll to my bed to transfer. My back is pulsating. She helps me put my pants on and prop myself up in bed. She grabs an ice pack and pillows. Once again, I’m cocooned with pillows. Tears roll down my face as the pain continues to intensify.

I see my nurse walk by my room, and I ask her if she can bring my pain meds. With a smile on her face, she says, “Of course.”

My therapist comes back into my room, and I thank her for today’s session. She has a big smile on her face, and says she can’t wait to work together tomorrow.

She leaves my room, and my nurse comes in to give me my pain medication. She tells me she’s heading to a meeting and will check on me in a bit.

After she shuts the door, I realize how blessed I am by those taking care of me. It makes this recovery a bit easier.

Later in the day, both of my doctors stopped by, and I shared with them my concerns. They both agreed that we needed to adjust the pain medication, and I wasn’t medically ready to be discharged quite yet. I felt at peace knowing my voice was heard.

I feel grateful for so much; my hard work and determination, my medical team, my support systems, and advocating for myself. Oh yeah, I can’t forget about the hot shower I just took.

We all go through difficult circumstances in life, and it’s important to take a step back and appreciate what you have. When you have that mindset, it allows you to look at things differently. It’s important to change one’s perspective.


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