Sunday, October 26, 2014

Guest Post: Shawn Pettit RN on My Wife, the Sjoggie

As I mentioned yesterday, Jenny Pettit, Sjoggie and author of the blog Understanding Invisible Illnesses, and her husband Shawn are visiting us.

We're having WAY too much fun.

I love having guests, but even better -- guests that I can cajole into writing a guest blogpost. Shawn readily agreed and asked what topic I wanted him to write about. I told him he could choose, as long as I was not the subject material. What follows is his excellent response.

Well done, and thank you Shawn. You provide not only the candid perspective of a husband, but also RN and caregiver:

WARNING: Because I want to get an unbelievable amount of information out of my head, some of this post might be a little rambling. Bear with me. 
So I've been summoned by the lovely Julia to write a guest post, which of course started a devious line of thought for me. "Hmm, what can I write about my wife that will turn her twelve shades of red?! Hee, hee, hee." However, as I write this, Jen's looking over my shoulder, so maybe I should behave (a little bit). 
Jen and I have known each other for almost fourteen years, and have been a couple for nearly as long. In all seriousness, we're perfect for each other, mostly because our collective insanity is so complimentary. There's also the strong possibility that we're too crazy for anyone else, but we don't touch on that too much. 
Part of what makes our marriage work is our surprisingly symbiotic relationship. On the one hand, Jen is extremely analytical and an accountant, which benefits both of us, as she manages our finances with expert precision and keeps us relatively organized (No kidding, the number of lists she has on Google Keep is staggering, but each and every one serves its purpose). On the other hand, I've been blessed with a compassionate personality (or so I'm told; there's still occasions where I wish bad things on drivers around me on the road) and a knack for physical sciences. This has benefited me in my pursuit to become an EMT and, later, a nurse. This benefits Jen as I work my hardest to be a caregiver as well as a husband.  
As people learn about me and my beautiful/crazy/intelligent/slightly neurotic wife, they come to learn a few things. Over the years, I've doggedly tried to explain the nuances of Sjogren's Syndrome to, well, everyone. Part of this explanation includes symptoms, eventual complications (the increased chance of lymphoma is what catches everyone's attention), and what it's like for Jen.  
This leads to one seemingly obvious conclusion for people who hear this story: "Wow, she's lucky to have a nurse for a husband!" Yeah, we agree with that statement now, but trust me, I had A LOT to learn over the years. 
When Jen was first diagnosed, I had no inclination to do ANYTHING in healthcare. Part of that is the simple fact that everyone in the healthcare industry need to do a better job of promoting our professions to kids. Even now, most nurses go into nursing because of a family member or a specific experience that steered them towards the job. We're getting slightly better at this, but way back in 2001, I had no clue about nursing, EMS, or anything else in healthcare. So when Jen was diagnosed with Sjogren's early, at age fifteen, I had no clue how to react. Basically, all I could think of was to hold her hand and tell her it was going to be alright, all the while thinking that I didn't know anything about this disease and that I could be talking out my ass. 
The first step to become an educated boyfriend, and later husband and caregiver, was getting the right information. Next thing I know, I'm reading articles, books, and websites with pertinent information about Jen's multitude of conditions (Sjogren's, Raynaud's phenomena, dysautonomia, localized scleroderma, PCOS, and endometriosis) and telling EVERYONE about it. If I'm gonna be educated, then by George, everyone else is gonna be too! I've found that this is what many people do when they find out a loved one has a health condition. 
The next step is a little harder. Becoming an effective caregiver involves becoming a stronger person internally. There have been many instances where Jen has been in pain, has been extraordinarily ill, and has been emotionally drained by her conditions. Those times are difficult, not just for her, but for me as well. All I want to do is make everything stop hurting, make everything easier, but the sad reality is that you have little to no control. Those are the times that you begin to learn how to be compassionate and how to take control of what you can. Even something as simple as figuring out what's best for Jen to eat when she's having a flare (a sudden exacerbation of symptoms) can make the whole world seem better. 
The thing is that, while I'm heading through my professional journey of becoming a healthcare professional (first an EMT, then a nursing tech, and finally as a nurse), I was getting my most effective training right at home. Sure, over the years, I've had fantastic instructors and mentors, each of whom provided me with incredible support and advice when I needed it. However, none of them could teach me the compassion, the patience, and the desire to provide excellent care that I learned simply from my time with Jen. And I'm still learning! 
In all fairness, my ambitions to become a nurse and to pursue bigger things comes from this relationship, even as she grouses in my ear and threatens me with no cake. My passion for healthcare was influenced by both my desire and responsibility to be an excellent caregiver as well as my observations of both excellent and terrible healthcare professionals (to this day, one of my biggest pet peeves is a physician or nurse who simply doesn't care about doing their job well). 
Today, I'm much more confident in myself as a caregiver, but it took a lot of time and a lot of information before I felt like an effective caregiver. Some people do think that being in healthcare made things easier, but even healthcare professionals go through the same feelings when a family member or friend is afflicted with a chronic condition as anyone else. Most nurses and physicians that I know still don't know much about Sjogren's, despite its increased prevalence.  
It really is true that sometimes patients and caregivers know about their health conditions more than their providers, which is something that I try to keep in mind as I work and as I present information on Jen's conditions. On the one hand, as a nurse, I don't know everything and there might be information that my patient or their family might have that will help me provide excellent care. On the other hand, as a caregiver, I need to keep in mind that not everyone knows what these conditions entail and, conversely, that sometimes they might have some information that I don't. 
It's been a long journey to this point, for sure, and just like any relationship, there have been bumps in the road. I can say one thing for certain: there's no way I would have become a good nurse without Jen. Her influence helped me grow as a caregiver and, later, as a healthcare professional. Even when she's threatening to make me eat prunes or I'm making a concerted effort to make her groan with exasperation, we complement each other and make each other better. I know sometimes she feels like she might be too much for me to handle, but, if anything, that just makes me love her more. And that makes all of the time caring for her worthwhile.
Of COURSE we had to visit Powell's City of Books


Jane said...

This is awesome - thank you, Shawn! As someone who has an amazing caregiver too, I know how grateful Jenny must feel. You sound wonderful together - just like me and my better half. Life with illness is hard, but when you have a life partner, it's that little bit sweeter. Thank you for writing.


Sue said...

Great post.

annie said...

Thanks for the post, Shawn. It's interesting getting a perspective from a spouse and in your case, also a caregiver. You're very lucky to have each other, I hope you keep learning and growing together.

P.S. am I mistaken or has Jenny lost weight?!!