Survivorship

Walk a Mile in My Shoes

To me this is a no-brainer: when a person has a chronic medical condition that they manage every single day, it does NOT mean they are supposed to stay in bed for the rest of their lives. At the same time, it also doesn’t mean they should extend themselves to the point that they are just making their condition worse by pushing thru pain to be “tough” or “brave.”  Some conditions will get progressively worse if you don’t adjust your lifestyle and take preventative measures.

I speak from experience. I have lymphedema in both of my lower extremities. Most recently, I have been battling what we think is neuropathy. The latter is much more painful to me than the lymphedema, but I’m not even sure what is what when it comes to the pain. All I know is that it hurts terribly.

I enjoy walking. That is one of my favorite stress relievers and a way that I stay physically fit. Gaining weight is very bad for my lymphedema so I try to stay moving, even if they are short now because of pain. Still, I do many things to keep myself smiling and positive because if you don’t have your mental health at the end of the day, what do you have?

Anyone that battles lymphedema or neuropathy knows it is a constant balance between sitting and standing. When I’m having a “bad day” my medical paperwork says I’m supposed to only work for four hours a day, three days a week. If I’m having a “really bad flare up,” I am supposed to keep my legs elevated all day. We all know that’s not feasible when you are trying to work every day and show up for your employer. It’s very stressful constantly trying to play catch-up and run out the door for another doctor’s appointment.

Someone made a comment to me the other day that really hurt my feelings (I cried). In short, they questioned how I could be out and about and yet still be so “sick.”  I have since processed it, and I realize that anyone that questions my pause from teaching does not know my struggles or my story. They do not know medically what is going on with me. For them to assume that I am “supposed to” stay in bed and not go on a walk or do anything fun, well that would also be detrimental to my mental health.

They are not in my shoes. They probably couldn’t even find my shoes on the shelf. If they could, they would know this:

I am constantly worried that I might have an accident because that’s what now happens sometimes because of the radiation to my bowels. It is very common among women like me who have withstood grueling treatments for cervical cancer. It’s a nasty side effect. God Bless Imodium!  Fellow Cervivors and I jokingly say that we need our own diaper bags. We can laugh about things such as bodily functions, but it doesn’t mean it’s fun or funny. It never goes away. We are just lucky to have a sense of humor about it because at the end of the day, what else can we do?

When you ask me to go boating or out to dinner, I worry that I will ruin the fun because my feet/legs will hurt and I won’t be able to even focus on the conversations around me. The pain can make me nauseous and I feel like I want to throw up. Sometimes my eyes will randomly tear up just because I’m so tired of the gig. But the gig is my life so I can’t take a vacation from myself.

When I’m trying to get to work on time, I may seem frazzled when I arrive, It’s not because I’m not trying my best. Some mornings the thought of standing hurts before I even get out of bed because I know what it’s going to feel like when I do. Sometimes I’m changing my clothes at the last minute because I had an accident as I was walking out the door. Such fun! At any random time that you are with me, I’m probably fantasizing about taking a hot bath. There’s something about chronic pain, stress, and physical exhaustion. Bad recipe.

Before you judge me (or anyone!) and try to critique me based on your idea of what a “sick person” does with their lives, try to put yourself in my shoes. You truly don’t know, unless you have lived it. Take a walk with me and let’s see what happens!  Remember, you don’t know my reality until you have actually walked a mile or two with me or next to me. This post isn’t just for my own situation, but it’s for all of us cervical cancer survivors and those with chronic pain or chronic illness who have dealt with the judgement of others.

I’m posting about this, because I’m trying to create awareness and empathy. People are beating cancer much more than they did decades ago. Yet with surviving comes long-term side effects that sometimes become progressively worse with time. Our bodies know the score. When discussing taking a break from work, a coworker said to me, “your body already made the decision for you.” She’s right. It did. And I had to take something off my plate so I could feel better physically/emotionally. I’m taking a knee right now for myself. And no, I will not be staying home in bed in a dark hole every moment of my life. I will keep on living and enjoying this life that I have fought so hard to enjoy. I am a real person and this is my life. Thank you if you are someone that understands. I love you. If you are part of my amazing tribe and you don’t feel you understand, please just ask in a supportive and loving way.

Shawna Christy, 46, was diagnosed with cervical cancer in 2005. Treatment included removal of her cervix, uterus, 1/3 of her vaginaand more. Though surgery and radiation helped her beat cancer, “the hard parts came later” – like chronic pain together with PTSD and the emotional, hormonal and spiritual challenges of being a cancer survivor. Shawna plugged into Cervivor for community and support. In 2016 she attended Cervivor School and became a Cervivor Ambassador who uses her voice and her experiences to open conversations and “change the narrative.” She lives in Ottumwa, IA and is the proud mother of daughter (Korynn, 18) and son (Kyler, 16). She is grateful for time with her besties and boyfriend, Allen. This year she is taking time off from teaching first grade to focus on her health to better manage her pain.

Read Shawna’s Cervivor Story or her previous blog “Cerviving with Lymphedema”

See other Cervivor blog posts about lymphedema: “My Under Armor: Do you know about lymphedema?” by Heather Banks

“On Wednesdays we wear Pink”… wait, what?

That is something my son Matthew always said to me, and I always laughed.  I had no idea that line came from the movie Mean Girls, nor how much I would remember this comment and how it evolved and shaped my Teal & White Tuesdays.  

I knew pink was the color for breast cancer as I had already been down that path.  I had no idea what the ribbon color was for cervical cancer. When I received my diagnosis in 2015, I had to research the ribbon to find out what my color of ribbon would be. Deep down somewhere in my subconscious, I knew I would be wearing that color for the rest of my life.  

After my lengthy treatment battles, I found Cervivor. This became my “go to” group for information, help and support.  I loved it when they said to wear teal & white on Tuesdays.  An idea began to form.  

I attended Cervivor School in 2019 with much help and support from my friends and family.  I honestly don’t remember Tamika’s exact question that day at Cervivor School, but I immediately remember my response, “On Tuesdays, we wear Teal and White.” Thanks Matthew, for the quote from so many years ago!! The idea continues…

I have bought my son several ties and dress shirts in the teal and white theme that he proudly wears to work. I make an effort to post something on my social media accounts about #TealAndWhiteTuesday every week to remind people about cervical cancer, to get your cancer screenings, to get your vaccinations, and to promote awareness. The idea is growing.

In January of 2020 during CCAM, I was invited to Matthew’s place of employment, Hy-Vee. They did a promotion during that year to promote cervical cancer awareness. I had so many more plans for public awareness campaigns, but 2020 had other plans for meeting people.

I was forced to refocus my efforts, and the idea began to fully bloom.  Pandemic boredom = creative, crafting mind flow.  I started off with buying printable iron on sheets and made one shirt.  I wanted more.  I created a better graphic design and had made several more shirts.  I handed out twelve shirts to people, and five of them went to high school age girls. We discussed cervical cancer and the need to take care of yourself, even at a young age.

I made and sold teal and white kitchen pot scrubbers, with proceeds going to Cervivor. I attend the Cervivor virtual holiday party and am now on the CCAM Planning Committee. I tell everyone I meet that health is a PRIORITY in life and do not ignore it! 

I post about cervical cancer and Cervivor so often now on social media to spread the word. I talk about it with my friends and family. I am not ashamed or too shy to share my story with others, no matter who they are.  I want people to know how this affected me, and how I am a stronger person now for the ordeal I survived.

The impact that Cervivor School had on me to advocate and talk about this has amazed even myself.  I was not even sure about going, and here I am a year later involved as I can be and loving every minute of it.    

I love #TealAndWhiteTuesday and dress in it every week, even if I am not leaving the house to go anywhere. I am forever grateful to my family and friends in supporting me to get the word out, and I love how involved they have become to spread the word as well.

Have you ever noticed how many people actually read the t-shirts people wear? Have you stopped yourself to read someone’s shirt as they walk by you? It offers an ice breaker without having to say a word.  

“On Tuesdays we wear Teal and White.” Spread the word.

Karen North lives in Liberty, Missouri. She is a retired registered nurse. Her world is her family, fur-babies, and friends. She is a six-year breast cancer survivor and a four-year cervical cancer survivor. 

Read Karen’s Cervivor story.

Read Karen’s blog post on being both a breast cancer survivor and cervical cancer Cervivor.