woman hiking in the Rockies

When I Made My Daughter Proud by Hiking in the Rockies With Rheumatoid Arthritis

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As a momma, my goal has always been for my children to see me as a whole person — someone who makes mistakes and can own up to them, someone who, at times, is weak and vulnerable and someone who sometimes even falls apart. 

Rheumatoid arthritis (RA) has definitely given my children experience in all of these areas. They have witnessed me at my worst. As young children, they helped me undress, have been rudely awaken by our border collie to come help get mom out of the bathtub, held me while I cried after rheumatology appointments and much more.

But as a momma, I also want them to see me at my best, to see me pick up the pieces and move forward. To show that I’m strong enough to handle whatever comes my way. I want my kids to know I am forever learning and making myself better as a person. When I show them my strength and make them proud, it is the best feeling ever!

My daughter and I decided to take a short spring break vacation together — just the two of us. She has always wanted to see the Rocky Mountains, so we planned a trip to Colorado. We had several things we wanted to do during our short three days, but the main thing was to hike in the mountains. Unfortunately for us, Colorado had a blizzard two days before we arrived, so the mountains were covered in deep snow. But we didn’t let that stop us.

Together we took in the beauty of Mother Nature. We stood and absorbed the absolute quiet, we watched a mouse run on top of the snow, we stopped to observe birds and we even ran into two separate families from our hometown of Wichita, Kansas. It truly is a small world.

I am going to be honest: The higher we hiked, the more difficult it was for me. My 17-year-old was jogging up the inclines while I had to stop for frequent photos (and catch my breath). But on this mountain, I made my girl proud. She saw me keep going. She saw me push my physical capabilities of trudging up snowy trails. On one path, she said, “Mom, you are almost 50 and have RA. I hope I’m as active as you at your age.” This will forever be my favorite part of the trip.

Rheumatoid arthritis is forever an up and down journey. Some days we face challenges and need the help of others. Other days, we prove to those around us and ourselves that we are strong. We may have an autoimmune disease, but we don’t let it stop us from making those around us proud.

Follow this journey on The Life and Adventures of Cateepoo.

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The Beautiful Gift I Received That Changed How I Manage My Illness

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I am 26 years old and two years ago I was diagnosed with juvenile rheumatoid arthritis. From a young age it targeted my temporomandibular joints, reducing my airway to the point that I needed orthognathic surgery to reverse and repair the damage. At first, the diagnoses felt manageable. It blended into my life like weekly staff meetings or Wednesday night runs. I learned to compartmentalize it into a few boxes on my weekly schedule. I went to all of my appointments; I took my medications like clockwork. I ran in and out of the doctor’s office as fast as I could, my lists of questions jotted down on the backs of old receipts, ready to be pulled out swiftly and efficiently. I was determined to make it as non-existent as possible.

And then, before I knew it, my beautifully scheduled life came to a sudden and grinding halt the evening I awoke from surgery and found my face swollen, my jaw wired shut and a morphine drip chugging at my side. It was something I had anticipated for months, yet no amount of planning or optimistic note-taking could prepare me for the utter trauma of having my life come to a swift halt. Nothing could prepare me for the immense guilt, anguish, fear and loneliness that would engulf me once the morphine drip ran out and I found myself in a house in Santa Barbara awaiting a month of recovery.

The recovery that I imagined as a peaceful excursion within myself turned pretty nasty. For the sake of withholding the gorier bits, I’ll simply say that I was not a pretty sight, physically, or emotionally. Thankfully, the physical reality wasn’t anywhere close to that, but it wasn’t easy. The swelling, as any orthognathic surgical patient can attest, is brutal. It is suffocating in its persistence and its pain. 

I’ve read studies about how surgical patients experience post-surgical depression. It makes sense, of course. Life as you have lived it slows dramatically; physical movements are inhibited, if not completely stalled. And perhaps the hardest part of all: you’re on your own in this. Even for those of us who have immeasurably supportive people in our lives, they simply can’t go through this with you. You walk along this path on your own and inevitably your old demons come out of the shadows. Those dark and ephemeral voices of insecurity and self-doubt love to strike when you’re your most vulnerable. They stopped me in my tracks and berated me with angry accusations and mean comments. Why wasn’t I at work? Why hadn’t I checked my email this morning? Why hadn’t I replied to the 10 messages waiting on my phone? Here I was, days after a life-changing and invasive surgery, frantically trying to reclaim bits and pieces of a life that I determinedly separated from any and all diagnoses.

And then, just as the spiral was reaching a sickening pace, I experienced a timely intervention. In an effort to reduce some of the post-surgical swelling, I decided to visit an acupuncturist. And while I was there, the acupuncturist said something truly remarkable. He said, “Cherish this time to heal and allow yourself to be vulnerable. There is nothing else you need to do right now than to sit quietly. This is the most important thing.” And then he left me in a dark room with 30 needles in my body, and the parting message, “Let yourself be quiet.” It was the most beautiful gift in the world.

It is an odd thing to be given this special moment of silence. It’s a gift you feel almost inclined to reject, to kindly hand it back to the giver and say, “Why don’t you take this, I have somewhere else I need to be right now, and a few more things on my to-do list. Maybe tomorrow.” But I gave it a chance, and I started to breath, and I started to relax, and I started to feel my body unwind, and then all of a sudden I was crying. One of those belly deep cries that seem to come out of your very pores. This was a cry that resonated from the soul, that erupted from the heart, that felt like an extension of myself. The tears came swiftly and with ease, flowing like rain down a glass windowpane.

I cried for my body: for my bones that seemed so weak, and for my immune system that was working as hard as it could but seemed to have the wrong way of going about it. I cried for my face, and the plates and screws that were now holding it all together. I cried for the fragility of me. I cried for the vulnerability of me. I cried because I knew, deep in my bones, that this was inescapably, intimately me.

As the tears continued to fall, I started to form thoughts in my mind, specific phrases that I began repeating to myself. “I have arthritis. It hurts. It really, really, really hurts.” It was the first time I felt angry, the first time I felt like it simply wasn’t fair. I began to embrace the weight of it, the heaviness of it. A medical condition such as this can never be separate from you. This illness, and by extension, this surgery, will stay with me for the rest of my life. It will rest in the titanium plates in my face; it will linger in my blood and hover in my fingers and toes. And it will simultaneously weaken and strengthen me.

Since that day in the acupuncturist’s office, I have managed my arthritis in vastly different ways. When I’m feeling tired and sore, I take a hot bath and I turn off my email, put aside my phone. At the end of the day, I make time to stretch and do yoga. In the mornings I light a candle because it smells nice and for some reasons brings me a lot of relief. I tried to stop multi-tasking and to practice mindful presence. I cook healthier meals, and I have never missed a medication since. I have learned to care for and love a part of myself that before had seemed so foreign and unnatural.

For months I tried to fit arthritis into the spare parts of my life, to squash it into the corners of my week, convinced that as I checked off appointments, the arthritis would wait quietly in the corner until the following week when it would take its turn again. Unfortunately, by doing that I was extracting an integral part of myself, tossing it to the side without ceremony, and splitting my being into pieces in an effort to manage time and obligation. Little by little I chiseled away the most formative part of who I am, and I treated it without the attention and care that it deserved.

It wasn’t until I reached out and grabbed onto the diagnosis with dear life, feeling the weight of it and the realness of it, that I began to understand how to care for myself wholly, without question, and without exception.

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Michael Kuluva Designs Activewear Line Inspired by His Experience With Arthritis

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For fashion designer Michael Kuluva, arthritis is more than a condition he lives with – it’s the inspiration for his latest line of activewear.

Showing at New York Fashion Week on Tuesday, Kuluva’s latest line “Creaky & Tipsy,” an offshoot of his “Tumbler & Tipsy” label, highlights the joint pain and inflammation Kuluva experiences as someone with arthritis.

The 33-year-old designer was diagnosed with rheumatoid arthritis when he was 28 and studying fashion at the Fashion Institute of Design and Merchandising in Los Angeles.

Model wearing sweatshirt with burst of color
Photo by Jordan Davidson/The Mighty

It started with bad lower back pain, Kuluva said. “I just thought I had a kidney stone.” As his pain intensified, Kuluva went to the doctor for tests and was diagnosed with psoriatic arthritis, a diagnosis that would later change to rheumatoid arthritis.

“I feel jabbing pains in all of my joints, particularly my ankles, knees  and elbows,” Kuluva told The Mighty. “There are so many side effects that come with the medication I take that it’s hard to differentiate between the medication, arthritis and the pains of life.”

Models wearing Michael Kuluva
Photo by Jordan Davidson/The Mighty

Kuluva describes his collection as unique. “I’ve never seen anything like it,” he said. “It really shows the joints affected by arthritis. It’s an explosion of colors on joints that would light up on test for arthritis.” Kuluva’s activewear items also feature stretchable fabrics, making them comfortable enough for people with arthritis to wear.

Model wearing "Creaky & Tipsy" activewear
Photo by Thomas Concordia/WireImage Style360

“Creaky & Tipsy” was presented in partnership with CreakyJoints, a nonprofit organization that provides resources and support to people living with arthritis. “I really want to build awareness that even though we don’t look sick, multiple people live with arthritis.” Kuluva said. “Be vigilant about your body. We need to find a real cure for this, we need to stop the cycle and do research to really stop the disease.” 

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What You May Not See When You Look at a Person With Rheumatoid Arthritis

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When you see me at work in the morning, you don’t know what it took just to get me in the door. I drive with the heated seats on, air conditioning blowing, tennis ball lodged between my hip and the center console and an ice pack around my knee. Even with all of that, I am still typically gripping the steering wheel in pain, just trying to get to work so I can get out of the car and move my joints.

When you see me at the gym, wearing my headphones, working out next to you, you don’t see what it took to get me there. You don’t know that every afternoon, my pain increases substantially, a fever sets in… I feel like I have the flu. Every. Day. I have to convince myself to go to the gym because I know the movement is good for me. There are days I cry on the commute to the gym but power through because I won’t let this disease dictate every single thing I do.

When you see me park in the handicapped spot at Target and get out of the car, smiling at my daughter, you don’t see the struggle behind my happy face. You don’t know that one good trip to Target will knock me out for the day. You don’t know that my daughter says she enjoys going with me because I’m funny and we have a good time, but that I know she knows I need help.

If there is one blessing I’ve gotten from my rheumatoid arthritis diagnosis, it is that I’m aware of what I might not be seeing. I encourage you to not judge those with a chronic illness, to not question the amount of pain they are in, or how awful their pain really is. And to go a step further, when you see someone slowly walking across the road, instead of feeling frustrated that they are slowing you down, take a minute to realize she may be going as fast as she can.

Image via Thinkstock.

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Why I No Longer Believe I'm Being 'Strong' By Hiding My Disabling Conditions

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When I was 5 years old, my throat hurt. So did my head. I felt miserable, but I didn’t tell anyone. Not long after, my leg began to hurt. I still didn’t tell anyone. I walked the two blocks to my kindergarten each day, pretending I was fine. One morning, my body decided not to tolerate this stoicism anymore, and I collapsed on the sidewalk in front of my school. An eighth grade teacher saw me fall from his classroom window, ran outside, picked me up, carried me into the building, and wouldn’t leave my side until I was taken away in an ambulance. At the hospital, my terrified parents were stunned to discover that I’d been living with untreated strep throat, which cause rheumatic fever. As a result, I have to deal with damage to my heart every day for the rest of my life. Why? Because I refused to tell anyone when I was sick and miserable.

Eleven years later, I was badly injured in an auto accident. When a physician told me my left arm needed to be amputated, I nodded and said, “Don’t scare my parents. Let them know it’s OK.” The physician looked at me with horror and refused to reassure my parents. He insisted on showing them my injuries and explaining how serious they were. My mother began to cry, and my father fainted. I didn’t want anyone to know how badly I was hurt.

After this auto accident, I endured too many major surgeries to remember. I endured gangrene. I endured painful physical therapy. I endured debridement three times per day for nine days, and that’s an agony that I cannot describe. I never cried, not once, but I could not stop myself from screaming. My mother cried more, and my father fainted again. What I did not endure was amputation, because the physician who’d claimed it was the only option simply could not bring himself to cut off a 16-year-old’s arm. He sent me via helicopter to a different hospital to receive care from a different surgeon. He told me that I would never use my arm again. He grinned and nodded at me when I replied with an expletive about what he could go and do to himself. I asked for a cigarette lighter, and I repeatedly tried to light that thing until finally — two years later — I succeeded. Why? Because I refused to live as a victim. I didn’t want anyone’s pity.

I was probably 35 years old when I realized something new was wrong. I didn’t tell anyone. Family and friends would feel hurt, angry and frustrated when I’d cancel plans because I was “sick.” I wasn’t diagnosed with rheumatoid arthritis until I finally couldn’t stand what was happening to me and admitted to my doctor that I had a problem. By then, I was in my early 40s.

I write about my disabling conditions so my friends and family members understand that I love them and don’t want to cancel plans with them, but that I sometimes need to do it. I write about my conditions so others with similar conditions feel less alone, and so they know we can emotionally help each other through the difficult days.

I write about my conditions because for decades, I thought I was being strong by not complaining, by hiding my pain, by smiling and joking when I should have been resting my sick body instead of adding stress to it. I wasn’t being strong; what’s strong is being a vocal advocate for myself and for others who have disabling conditions.

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An Hour in My Life With Rheumatoid Arthritis

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Imagine waking up and reaching for your phone to check the time. Only you knock the phone to the floor because your hand doesn’t open. The joints are stuck. So you start trying to move the joints enough to get your hand open. After a few minutes you can at least awkwardly pick the phone up. Swiping is going to take at least another 10 minutes so you leave the phone for the moment. Imagine the frustration when even the simplest of tasks isn’t simple.

Imagine stepping out of bed and you can’t feel the floor. All you can feel is the burning barbed wire in the joints in your feet as they take your weight. Then you stumble into the wall because those same joints are stuck, too. Imagine that you really need to pee so you resign yourself to crawling on your knees and elbows to bathroom because it’s quicker and less painful than trying to walk. Imagine the indignity of it.

Imagine finally getting the joints moving enough so you can get dressed. You don’t buy clothes with buttons anymore because they hurt too much to do up and sometimes you couldn’t do up a button even if you wanted too. Imagine not bothering with makeup because you can’t grasp the smaller brushes or liners. Imagine putting on a pair of joggers yet again because you can’t handle the pain of wearing even low heels these days. Imagine feeling like less of a woman because of this.

Imagine that you look at your schedule for the week. Yet again you have blood tests to do. The lady at the blood test place knows you by name you go so often. Then you have the specialist appointment. Physical therapy. Need to stop at the pharmacy to fill another script for a medication which may or may not help. You look at your bank account and work out how much the rheumatoid arthritis will cost you this week. You watch another couple of hundred dollars disappear from the money you put away for a holiday. You wonder what will happen when that money runs out. You wonder what holiday you would have gone on if you were well. Imagine how depressing it is when every week you have to spend time and money looking after an illness you never wanted in the first place.

Imagine that you sit down for breakfast. You don’t have an appetite due to your liver not working properly but you need to have food with your medication. You count out the 8 tablets you need to take this morning. You fight a mental battle around the pain killers. The need for pain relief vs the need to protect your liver and kidneys from further damage. You resign yourself to going without. You read through the information your specialist sent you on a new clinical trial. Some medication that might be more effective than the last one. You feel your hope rising until you read the long list of possible side effects. On the TV, an ad comes on about the latest “breakthrough” for arthritis. You watch in hope but it’s nothing new. Imagine the endless cycle of hope and hopelessness an incurable disease brings.

Imagine your baby son starts crying so you go to pick him up. Your left wrist explodes in pain as you lift him and you force yourself to hang on tighter so you don’t drop him. You look into his eyes and pray that they find a cure so he never has to know what it’s like to live in pain. Imagine the fear and guilt of knowing your child could develop RA too for no more reason than they have your genetics.

Imagine you are the only person your age you know who has rheumatoid arthritis. Imagine how isolating that is. Imagine trying to explain what you live with and only getting blank stares in return. Imagine the pressure to be OK even when you aren’t.

Imagine that the above represents one hour of your life. Now you just need to do this for the rest of your life.

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