21 → Minnesota, USA → Nanny, Student & Activist → Arthritis & Fibromyalgia → Ice Packs, Exercise, Diet, Medication.
R: Hi Kenzie, Where do you live?
K: I am originally from central Minnesota, but currently reside in St. Paul, Minnesota where I attend university.
R: How old are you?
K: I just turned 21 on Monday, September 19th! It was a beautiful day celebrating another year on this earth– this last one sure has been a DOOZY! I felt SO loved and full of life. Great day!
R: What do you do?
K: Right now, I do A LOT of homework and coffee drinking! That’s life as a college student, though, and I really do love my studies. I’m in the process of applying to the social work program at my university right now and just started my first internship which I am loving! I’m interested in working with adults who have progressive/terminal illness and disease. When I’m not studying or doing homework, I’m working on freelance advocacy ‘stuff’ such as blog posts, Twitter chats, and interviews like this one! I do quite a bit of traveling to attend various health conferences as well. I try to post regularly and keep up with communities on Twitter/Instagram when I can. Though I’ve neglected my own blog for quite some time now, there is ALWAYS something in the works. Stay tuned!
R: What did you do before?
K: To be frank? I hardly remember my life before disease or advocacy. Chronic illness and all that comes with it (both negative + positive) have become such an integral part of who I am. I love that I and so many others have been able to turn something painful into something purposeful. It’s what motivates me to get out of bed each day!
R: What does home life look like – family / pets?
K: I am smack in the middle of two sisters and one brother! Middle child syndrome is real. HA! My parents live in central Minnesota and so do my siblings. We have a family dog, Hazel, and I am currently in the process of applying, interviewing, and fundraising for my very own service dog. I look forward to that being a reality in the *hopefully* near future! Right now, I live in a suite style dorm/apartment on campus at university with 2 other girls!
It's official folks! I'm fundraising for my very own SERVICE DOG! If u can donate or share I'll be forever grateful! https://t.co/7ccmymwbDT
— Kenzie (@accordingtokenz) March 30, 2016
R: What makes you happy?
K: Advocating, traveling, writing, reading, hiking, kayaking, and connecting with people who have a story to tell. Pretty much anything that allows me to be reflective and expressive! Fun fact: sending/receiving handwritten snail mail is my favourite thing in the whole wide world!
“Over the past 6 years, I’ve officially been diagnosed with seronegative rheumatoid arthritis, fibromyalgia, cervical dystonia, chronic migraines without aura, endometriosis, hypoglycemia, major depressive disorder, generalised anxiety disorder, and PTSD”
R: What are your specific diagnoses?
K: If you want an exhaustive list, I’ve got one for you! Over the past 6 years, I’ve officially been diagnosed with seronegative rheumatoid arthritis, fibromyalgia, cervical dystonia, chronic migraines without aura, endometriosis, hypoglycemia, major depressive disorder, generalised anxiety disorder, and PTSD. WHEW! Say that 10 times fast. I have previously been diagnosed with irritable bowel syndrome (IBS-C) and colonic inertia as well, but had my large intestine removed in April of 2016.
R: How long have you had Fibromyalgia?
K: I was actually loosely diagnosed with fibromyalgia back in 2010. However, months later my diagnosis was changed to juvenile enthesitis-related arthritis. Months after that, it was changed to juvenile idiopathic arthritis. Most recently, I was diagnosed with seronegative rheumatoid arthritis and fibromyalgia by a rheumatologist at Mayo Clinic. I have adopted that specific diagnosis since July of 2015 and feel that diagnosis accounts for majority of the chronic pain symptoms I experience (at this time).
R: How would you describe Fibromyalgia in your own words?
K: Fibromyalgia is a chronic pain condition categorised by widespread nerve and muscle pain/tenderness. Fibromyalgia not only causes debilitating pain, but it is also typically marked by extreme fatigue and weakness. Fibromyalgia alters sleep patterns, contributes to memory “fog,” and so much more.
“exams, assignments, or part-time work– has been exceptionally difficult. I have to utilise a planner, multiple calendars, and tons of sticky note reminders to stay on task and accomplish what I need to while managing the nerve pain.”
R: How does it interfere with a normal day?
K: Over the past few years, my memory fog has become more and more difficult to manage. Being a college student who always has something going on– whether it be exams, assignments, or part-time work– has been exceptionally difficult. I have to utilise a planner, multiple calendars, and tons of sticky note reminders to stay on task and accomplish what I need to while managing the nerve pain. I also have to allow at least 30-45 minutes to stand in a hot shower each morning. Because of fibromyalgia, I experience a lot of stiffness, particularly in the morning hours. The nerve pain and spasms are always there. Mindfulness techniques have taught me a lot about how to distract myself from the pain when necessary, but it truly never goes away.
R: Does it affect relationships with people around you?
K: I let out a huge sigh upon reading this question! Sometimes I wish I could say it didn’t, but it absolutely does. Like I said, being in pain 24/7 has become an integral part of who I am. “It’s just life” for me, and “it’s just life” to so many others as well. To be very honest, on exceptionally high pain days, I know I am irritable as hell! It’s difficult to express your pain level(s) and mood when your body makes you feel so isolated. Being in constant pain often makes me wonder if I will ever be a “good enough” life partner for someone else. I mean, I can hardly take care of myself some days! Most mornings, the reality is that showering is difficult! It’s a tough thought to wrestle with, especially when your peers are staying up late, dating, partying, etc. all around you and all you can think about is the next time you can lay down with the heating pad to alleviate some of the pain.
R: Do you think your life would be different without Fibromyalgia?
K: 100%, yes. And to be honest, I wouldn’t want that life. Fibromyalgia and my other chronic diagnoses have taught me the value of stillness, vulnerability, and resilience. Without the past 6+ years of *mostly* painful experiences, I wouldn’t be the person I am today. I often say to myself: “maybe it all ends up like it’s supposed to be.” …and I believe that!
“I’ll never stop sharing the authentic, real moments of living with chronic illness. I’ve gained far too many incredible relationships with people in the process to back out now!”
R: Have you found any positive aspects of Fibromyalgia?
K: 100%, yes! Again! When I started Life According to Kenz, I basically vowed to be as vulnerable as I could be with the people reading. Eventually, I adopted that mentality in my personal/offline life as well. Vulnerability has now become “normal” to me. Some people may say I share too much; and that’s fine for them to think that, but vulnerability truly gives me freedom and LIFE despite the pain I feel holds my body hostage. I’ll never stop sharing the authentic, real moments of living with chronic illness. I’ve gained far too many incredible relationships with people in the process to back out now!
R: And you also have arthritis?
K: I do! Autoimmune (rheumatoid) arthritis has caused the most ‘damage’ in my body to date. My body attacks its own tissue which causes joint pain, swelling, redness, and significant inflammation. I’ve had surgery on my right hip and right ankle are far as joint surgeries go, and I’m sure there’ll be more to come. One day at a time, though!
“It took nearly 2 years from the onset of my joint pain, spine pain, swelling, fevers, and mobility issues to be diagnosed and treated by a rheumatologist”
R: What was the process of diagnosis?
K: My primary care provider refused to refer me to a rheumatologist because my rheumatoid factor and SED rate (blood tests) “appeared to be fine.” She treated me for clinical depression and fibromyalgia, but the medications hardly helped and made me so sick. Eventually, at her wits end, my mom contacted Gillette Children’s Specialty Healthcare in St. Paul, MN where my diagnosis process began. There, I was diagnosed with juvenile enthesitis-related arthritis.
— Stanford Medicine X (@StanfordMedX) September 18, 2016
R: Did doctors figure it out straight away?
K: No. It took nearly 2 years from the onset of my joint pain, spine pain, swelling, fevers, and mobility issues to be diagnosed and treated by a rheumatologist.
R: How does your arthritis affect/interfere with life today?
K: In many of the same ways my fibromyalgia does. That relationship piece I mentioned is just so debilitating and isolating. Again, the pain is constant and often unpredictable. I just have to do the best I can each day. I’ve found that communication with those around me is key. Telling a professor “I can’t come into class today because of these symptoms” or letting a friend know “my pain is especially bad today” is so much easier than trying to cover it up and breaking down later from the stress, anxiety, etc. that causes. It’s taken me a long time to understand and employ that honesty!
“Icing and elevating my joints as well as using ice packs is something I have to do on a daily basis. I also have to exercise when I can, stay away from triggering foods, and take over 10+ medications diligently on a daily basis.”
R: How do you best manage it?
K: Icing and elevating my joints as well as using ice packs is something I have to do on a daily basis. I also have to exercise when I can, stay away from triggering foods, and take over 10+ medications diligently on a daily basis. I do two weekly injections by myself, one of them being a chemotherapy drug. Though the side effects can be even more debilitating than the pain for a day or two following the injections, these medications are stopping the progression of disease in my body and truly are necessary.
R: Tell us about your blog – what’s it about?
K: Life According to Kenz started out as an online journal and quickly became a lifestyle/health advocacy sort of blog. There isn’t really a niche my blog identifies with, but it is what it is! I share the ramblings weighing on my heart and mind and try to maintain a community that is honest and accepting.
R: Why did you start it?
K: I get this question a lot and can honestly tell you I have no idea. We would have to somehow contact my 14-year-old self to get a proper answer!
R: Have you received a good response/feedback/comments?
K: There is so, so much good in the online chronic illness community. It is the people who make up that community who have saved my life and sanity! Many have been supportive, but there has been plenty of trolls, harassment, and hatred sent my way as well. I would say unsolicited advice is the thing I get most (i.e. “have you tried stopping all of your medications and taking this supplement?” OR “you should really get off all of those drugs– you’re so young!”) I’ve come to the conclusion that while people can say whatever they want, I still get to make my own decisions regarding treatment and life in general at the end of the day. I use the block button on social media quite frequently and am not ashamed to say so!
R: Where can we sign up to follow?
K: Head to lifeaccordingtokenzblog.com and there is a follow by e-mail option on the left hand side bar. Or, you can follow me on Bloglovin. Another great way to stay connected is by following me on Twitter, Instagram, or Facebook!
R: Have you been officially diagnosed by a health professional for Fibromyalgia & Arthritis?
K: Yes, a rheumatologist has diagnosed me with both of these conditions. My other miscellaneous conditions have also been diagnosed by various healthcare professionals/specialists.
R: Did they prescribe medication?
K: Yes. It is crucial for me to be on medication for my rheumatoid arthritis. Why is it crucial, you ask? To prevent further damage and destruction in tissue, joints, and internal organs. Many of the other medications I take are to manage pain or other symptoms such a nausea, sleep disturbances, etc.
“I take anywhere from 13-18 pills a day”
R: Do you / Did you take medication?
K: Yes, I do. I take anywhere from 13-18 pills a day (some are only once weekly, some are OTC drugs like Tylenol). My injectable medications are Methotrexate (I use the Rasuvo autoinjector) and Humira. Under the supervision of my pain management physician, I also use opioids to control pain on a PRN basis.
R: Have you seen a therapist?
K: I see a licensed psychologist as well as a licensed psychiatrist. These professionals address and manage the mental health struggles that have come up throughout years of living with chronic pain. They have also taught me various pain/anxiety/stress management techniques that help me cope with my symptoms on a daily basis.
R: If so, did therapy help?
K: I’ve been seeing a mental health professional of some sort for 3 years now. I continue to learn new things about myself and the people around me because of this therapy, and I value the safe space to process whatever may be weighing heavily on me.
How many nights a week do you deal with #painsomnia as a result of your chronic pain condition or chronic illness?
— Kenzie (@accordingtokenz) September 15, 2016
R: How do you best manage Fibromyalgia? (medication, meditation, yoga, alternative medicines, or something else)
K: I take a medication called Nortriptyline to help with nerve pain. I also take Seroquel at bedtime to avoid some of the sleep pattern disturbances fibromyalgia causes. I do yoga when I can and avoid high impact sports/activities. Biofeedback therapy has been incredibly helpful in the sense that it allows me to process the effects pain has on both body and mind. Massage is great as well, when it’s in the budget! 😉 I love listening to music, reading, and writing to distract myself from pain when it feels extra consuming.
R: Do you feel as if you’re in control of fibro now?
K: That is a tough question to answer! Each day is so different and as the seasons/weather change(s), so does my crazy sensitive body. I am pleased with my fibromyalgia treatment at this time, however, that does not mean I am pain free.
R: And arthritis?
K: My arthritis has been relatively stable since we introduced the Humira/Methotrexate combination. Again, that does not mean I am pain free. It just means we’ve found a concoction that seems to be slowing the progressive destruction of my tissues, joints, and organs at this time!
R: I also suffer heavily from chronic pain due to extreme injuries sustained in a car accident. How do you manage on a daily basis? What’s your pain management routine?
K: There is no one way to manage chronic pain or its symptoms. On another note, every body is different. My ‘key tips’ for managing on a daily basis are the following:
R: If you could go back and give your younger self some advice about your conditions, what would you say?
K: I wish I had been more honest and vulnerable from the get go. When I was a freshman in college, I tried to hide my disease(s) and pretend they didn’t exist. I stopped my medications, stayed up too late, and didn’t care a bit about what I ate. Let me tell you, that didn’t go well and I paid for it in pain and joint destruction. When I finally confided in a few trusted professors and friends, I found that it changed everything. They wanted to help! I didn’t feel so stressed or like I was living a double life! AMAZING
R: What would you do differently?
K: I know I risk sounding cliche here, but not. a. thing. I am so grateful for where I am today and it’s scary to think I might not be here had I done one thing differently!
R: You’re an ambassador for Arthritis National Research Foundation. Tell us about what that involves and where we can follow/support you?
K: ANRF has such a supportive and fun team! They also have some really cool #CureArthritis gear to raise awareness. They fund an incredible amount of arthritis research and I am honored to be an ambassador for them. We have a few things in the works as far as blog posts and other collaborations. More to come on that! For now, check out their website here and like them on Facebook!
“It’s just important to keep in mind that no two patients are the same. We react to medications differently, we see various specialists of our own, and people sharing their stories NEVER equals medical advice.”
R: How do you educate yourself on fibromyalgia/arthritis managem
K: I learn the most by connecting and interacting with other patients on Twitter, Instagram, and Facebook. Blogs are a great resource as well, and I follow many! It’s just important to keep in mind that no two patients are the same. We react to medications differently, we see various specialists of our own, and people sharing their stories NEVER equals medical advice. While I absolutely believe patients are the experts of their own experience(s), I don’t ever want other patients to ‘follow’ or ‘adapt’ my treatment plan/regimen without first consulting with their physician.
R: Can you recommend any therapists / doctors / specialists / coaches / mentors / clinics / foundations?
K: The Arthritis National Research Foundation is the one foundation I’ve really put roots down with. I love their content and the passion they have for us as warriors! I’m currently working on a page of “good specialists” for my blog and will share that in due time. 🙂 I also work closely with the Joint Decisions team. I led a Twitter chat with them back in August and have more in the works currently. They are a great group as well and the conversation taking place under that hashtag are remarkable. Visit their Website and Facebook here.
R: What’s on your horizon for 2016?
K: I am headed to Philadelphia in mid-October for a Joint Decisions Empowerment Summit. I’ll be there for 5 days and can’t wait to hug so many of my online advocate friends! Additionally, it will be a great opportunity to network and share some of my endeavours from the past several months. Other than that, I’ll be having radio-frequency ablation surgery for my spine in early October and a laparoscopy for endometriosis at the very end of October. Recovering from surgery is what’s on the horizon, mostly!
“This community means the absolute world to me and I love nothing more than connecting with others who have their own story to tell!”
R: Anything else to add?
K: This community means the absolute world to me and I love nothing more than connecting with others who have their own story to tell! Feel free to e-mail me regarding collaborations, general questions, or just to chat! I would love to hear from you –>firstname.lastname@example.org
R: Thanks Kenzie!
Rodger Hoefel in conversation with Kenzie
Cover Photo and other images supplied by Kenzie