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

As much as I can try, there’s only so much I can plan around my health: Sometimes, I need to weigh the risks and benefits and decide when to be flexible. I’m a planner. I always have been and always will be. Unfortunately, my body doesn’t always like that. Anyone with a chronic illness knows making plans can be risky since you never know how you’ll feel when you wake up in the morning. But no one warns you about the planning you do in hopes of keeping your disease tame. And how all that planning only works some of the time. Read the full article at Bezzy PsA.

The process of being diagnosed and treated for one chronic illness was brutal. I wanted to cry when I realized I’d be going through this process again with another chronic illness. I’m stronger and wiser this time but also a little jaded. While I’ve had psoriatic arthritis (PsA) since childhood, and it’s had a significant impact on my life, it’s not my only chronic illness. Unfortunately, once you get one autoimmune disease, it’s not uncommon to be diagnosed with another. Read the full article at Bezzy PsA

 My treatment options for PsA aren’t just determined by my rheumatologist. My insurance company also has a say. Learning to manage my insurance is just as important as learning to manage my arthritis. Whenever I see my rheumatologist, I come out feeling positive. I have a great dynamic with my doctor, and she always addresses any concerns about my psoriatic arthritis (PsA). But whenever we discuss my treatment options and plans, it’s always between three of us: myself, my doctor, and my insurance company. My health insurance always seems to have the final say. It determines which specialists I can see and which hospitals I can go to. But the policy that has affected me the most is step therapy. Read the full article at Bezzy PsA.

 My PsA is sensitive to any change in my body, especially hormonal changes.  Our bodies need hormones to function. Insulin regulates our blood sugar, thyroid-stimulating hormones regulate our metabolism, and melatonin helps us sleep, to name a few. As incredible as they are, they can have a lot of power over us. Usually, when we think of hormones, we think of the not-so-great parts, like mood changes and body odor during puberty. But there’s a lot more to it than that. Read the full article at Bezzy PsA.

Living with chronic pain doesn’t mean learning to ignore it. Listening to your body can help you figure out what works when managing pain. What doesn’t kill you makes you stronger. Push through the pain. Pain is weakness leaving the body. No pain, no gain. These are just a few of my least favorite sayings. The meanings aren’t lost on me. I get the point. But as someone living with psoriatic arthritis (PsA), dealing with pain is not that simple.  Living with PsA does mean having to push through a lot of pain to get through each day. To an extent, you get used to it because it just can’t be avoided. It’s true that sometimes “the only way out is through.” But to say “no pain, no gain” is not just an oversimplification — it’s not true! Yes, there are many times when we push past it. Sometimes, it feels worth it. Sometimes, it’s a matter of survival. Either way, our bodies may say differently and punish us for ignoring their warnings. Read the full article at Bezzy PsA.

 Flare-ups can be hard to deal with. Some are aggressive, while others are more bearable but still unrelenting. They are all important in relation to your baseline health. After I was diagnosed with juvenile arthritis (later, juvenile psoriatic arthritis or JPsA), I started to hear the term “flare-up” used at my doctor’s office. While I understood its gist, I didn’t use that term long ago. Initially, I thought I wasn’t having flare-ups at all. When I was little, I had been hospitalized due to severe arthritis pain and symptoms. After having been so sick and in the worst pain of my life, I hesitated to call anything else a flare-up. I would tell my doctor how I was feeling worse or in more pain, but I couldn’t bring myself to call it a flare-up. Read the full article at Bezzy PsA.

When you’re having a flare-up, getting dressed up and going out somewhere fancy doesn’t sound appealing. Dates don’t need to be fancy to be special. Consider some of these unique date night ideas for an arthritis-friendly evening. When I was little, I imagined all the fun dates my future husband and I would go on. I pictured dinner, dancing, ice skating, hiking, and other fun and romantic activities! What I didn’t picture at the time was dealing with psoriatic arthritis (PsA) as a young adult. I didn’t know that dating would look a little different for me. My pain and fatigue have influenced many parts of my life and my relationships, from little things like dates to what the future might look like. Read the full article at Bezzy PsA.