The Girl With Arthritis

  (This was posted Feb 16, 2024 - but I thought it was such a great topic that I wanted to repost it.) Please don't judge me based on my good days. Looks can be deceiving for someone with a chronic illness. What looks like a good day might actually be a good day. Or it might be a good few hours. Or it could be someone doing their best to function through the pain. You don't honestly know what someone is going through, especially when they have lived with the pain for a long time. You'd be surprised how much pain people can learn to smile through. Read the full article at psoriatic-arthritis.com

There’s a lot to consider when it comes to boundaries and privacy around your health. It’s important to remember that you have the choice to share or say ‘no.’ Everyone needs boundaries and privacy, but they’re especially important when you’re chronically ill. You deserve to be comfortable with what you share, how much you share, and who you share it with. My boundaries have changed a lot since I was diagnosed with psoriatic arthritis (PsA). Some people are an open book, while others are more private. And there are physical boundaries to consider, too: are you open to sharing you’re canceling plans because of a flare, do you push through, or is there a third option? Reach the full article at Bezzy Psa

One chronic disease is hard to manage, but more than one makes life chaotic. Find ways to get organized, take notes, and, above all, be kind to yourself as priorities change. I always thought I was a good multitasker. Then I was put to the test when I had to manage multiple chronic conditions. I had lived with psoriatic arthritis (PsA) since childhood, but adding a new condition as an adult threw me for a loop. Unfortunately, when you have one chronic disease, it’s not uncommon to develop another. It’s the gift that keeps on giving. It’s a lot harder to manage multiple diseases than many would imagine. Sometimes, it can feel like taking care of two (or more) toddlers at once. There are times when it’s peaceful, when one won’t stop running around, and when there are non-stop tantrums. It can be chaotic. Read the full article at Bezzy PsA

 While dealing with brain fog and constant appointments, my phone calendar keeps me on schedule. I often say, if something isn’t on my calendar, it doesn’t exist. I use my phone calendar frequently, calling it my “single source of truth.” While I have a good memory, I don’t trust myself to remember everything. And I blame my psoriatic arthritis (PsA) on that. Between complicated medical schedules and too many reminders, it’s easy to get things mixed up. I feel like I see medical staff more often than I see some family members. Read the full article at Bezzy PsA

(This article was originally published April 14, 2020. I am reposting it to bring attention to an important topic.) I've certainly had plenty of low points while living with psoriatic arthritis. Of course, that includes severe flares that made walking, talking, and even lying down excruciating. And yes, the pain has played a big part throughout these times. But I would be kidding myself if I didn't call out other symptoms, like fatigue, that made these periods downright miserable. Why doesn't pain feel as bad as other symptoms? I don't want to downplay the extent of the pain. It can keep me up late at night or wake me in the small hours of the morning. Pain can make it impossible to feel comfortable in any position and drive me to the point of mental and emotional breakdowns. Read the full article at psoriatic-arthritis.com

When your normal is already skewed, it can be hard to notice if something else is brewing. Sometimes PsA overshadows other symptoms. When you’re starting to feel run-down, most people assume they’re getting sick. Me? I would assume my psoriatic arthritis (PsA) is starting to act up. The same with any unexpected pain. (Or in my case, extra pain.) While others may assume they’ve overdone it at the gym or gotten an injury, I would just shrug it off and think my PsA must be a little angry today. Read the full article at Bezzy PsA

 From research and tech advances to patient-doctor dynamics, care has come a long way since I was first diagnosed with juvenile arthritis almost twenty years ago. Since I first started seeing a rheumatologist, I’ve gone from carrying around a plastic hospital card to checking in for appointments on my phone. When I think of my experiences from where I started this journey almost twenty years ago to where I am now, the care seems somewhat archaic. It’s incredible how much medical progress I’ve witnessed over almost two decades. As the years went by, I started to have more options, more access, and overall better experiences as a patient. I was only twelve years old when I was diagnosed with juvenile arthritis, to be clarified as juvenile psoriatic arthritis (PsA) a year or so later. My 12-year-old mind would have been blown by everything we have today! Read the full article at Bezzy PsA.

 From research and tech advances to patient-doctor dynamics, care has come a long way since I was first diagnosed with juvenile arthritis almost twenty years ago. Since I first started seeing a rheumatologist, I’ve gone from carrying around a plastic hospital card to checking in for appointments on my phone. When I think of my experiences from where I started this journey almost twenty years ago to where I am now, the care seems somewhat archaic. It’s incredible how much medical progress I’ve witnessed over almost two decades. As the years went by, I started to have more options, more access, and overall better experiences as a patient. I was only twelve years old when I was diagnosed with juvenile arthritis, to be clarified as juvenile psoriatic arthritis (PsA) a year or so later. My 12-year-old mind would have been blown by everything we have today! Read the full article at Bezzy PsA

 I was pleasantly surprised by how different physical therapy is now, and I am grateful for what I have learned so far. I first started physical therapy (PT) for my juvenile-onset psoriatic arthritis (PsA) when I was around twelve, and even back then, I had mixed feelings about it. Every week, my mum loaded me into the car and brought me to a local physical therapy clinic for an hour. I remember going for months, doing the same exercises over and over, and never getting past a certain point. Even when I switched clinics, much stayed the same. While I was positive about it at first, it quickly became a chore. I don’t want to imply I had a bad experience, but I didn’t feel like it benefited me. Read the full article at Bezzy PsA

Reflecting on my education and early career made me realize how my goals have changed. For the sake of my health, I had to adapt to a more flexible career path. Having been diagnosed with psoriatic arthritis (PsA) in childhood, it affected many of my milestones. As a kid, things still felt very achievable because I had a lot of support. The accommodations I had at school made it easier for me to focus on my work, so I thrived even at the worst of times. Read the full article at Bezzy PsA 

 Since getting a diagnosis of psoriatic arthritis, one of my biggest struggles has been dealing with health insurance. Learning about changes in coverage or hikes in copays is never fun. And once I aged out of being covered by my parents’ insurance, I had to navigate a totally new world of getting set up on new employer-sponsored insurance. The thing I’ve found most difficult is changing insurances and getting coverage for my biologic. In the past, I’ve switched insurances with relative ease. But last year I had a horrible experience when I got a new job. Not only was I without coverage for a short period (a total nightmare for anyone with a chronic illness), but getting coverage for my biologic, Humira, took several weeks. While waiting, I was in a flare between the stress and missing doses. I learned many important lessons about preparing and advocating for myself during the process. If your insurance is changing soon, get prepared for change and get ready to potentially be on th...

Most people worry about picking the right prenatal to optimize their health before trying to have a baby. My psoriatic arthritis meant I needed a little extra help while planning to start trying. I’ve always been determined that living with psoriatic arthritis (PsA) wouldn’t stop me from accomplishing any of my goals. One of those goals has always been to become a mother. After years of being the fun aunt and Godmother, I felt ready to have children of my own. So a few years into my marriage, my husband and I started to get ready to try a step that isn’t always necessary, but can be really helpful. Read the full article at Bezzy PsA

 My rheumatologist and I are a team; communication and trust are essential. So when I don’t feel heard or seen, it impacts my care. Last year, I ended up in the emergency room. My rheumatologist called me within an hour to make sure I was okay. She even followed up with me a few days later. I feel so grateful to have an amazing, dedicated rheumatologist. And even beyond this scenario, we have a great dynamic. Besides my rheumatologist, I’ve also had many great specialists who helped with different needs. But there have been a few doctors I didn’t connect with. For one reason or another, it wasn’t a good fit. In the past, I would stick around until I realized that staying with a doctor I didn’t feel comfortable with wasn’t doing me any good. Read the full article at Bezzy PsA