The Girl With Arthritis

(Resharing this article from 2022- it's such an important topic!) People with psoriatic arthritis often face significant delays in diagnosis. Once you get that diagnosis from a rheumatologist, it's tempting to stay with them for the long haul. And sometimes, it's a great decision to stick around. But a bad or even "meh" patient-doctor relationship can hurt your care. As a patient, you deserve to feel respected, heard, and know you're in the best hands. But if you dread seeing your doctor and feel like you're no longer receiving the best care, it's okay to find a new physician. Read the full article on psoriatic-arthritis.com.

"Call if anything changes," my doctor will say at the end of my appointment. Hearing that is such a friendly reminder. Having a good relationship with your rheumatologist is vital for anyone with arthritis. It's so important to be able to reach out and get a response when you need help. But, when you live with psoriatic arthritis (PsA), that advice can be a little challenging... Click here to read the full article at Psoriatic-Arthritis.com.

When I was thirteen years old, my mum and I had a very steady weekend routine. Right after school on Friday, we would go to my doctor’s office where a nurse would give me an injection of methotrexate. It wasn’t a huge deal, but I began to dread Fridays because of the medicine’s side effects. A lot of people with autoimmune arthritis do very well on methotrexate and go into remission. But I didn’t. I remember the doctor often telling me that the medicine “had better start working soon, because [I] won’t like the next level.” It was horrifying to hear this as a kid. I knew it wasn’t my fault, yet I blamed myself. It felt hopeless; if the medicine that worked for everyone else failed me, what would that mean for me later on? But years later, I realized there was no reason to feel hopeless. I’ve seen many different doctors since, and I’ve found that there’s no one way to treat chronic pain. But the most successful approach I’ve found is to treat the person, not the disease. The outc...

Lately I've had incidents of my fingernails and toenails turning blue. It's not as if the skin was blue, which would be terrifying, but it was still a little concerning. I brought it up with my rheumatologist the other day and showed him numerous pictures I took of it. After he examined my fingers and toes and felt how cold they are, he gave me a diagnosis: The blue was caused by me standing or sitting up. The treatment? Lie down. Best treatment ever. I took this with a grain of salt. Lie down every time? I can't wait to lie down in class, on the train, randomly in stores. It's literally a dream come true. Doctors really don't get it. They don't listen. Even the best of the best can be dismissive sometimes. I really like my rheumatologist and I've been with him for years, but sometimes he's just a pain in the butt. Did not listen to me explain that it happens when I can't warm my fingers or toes? It's obvious I probably just have a very mil...

Your hearts racing, palms sweating. They'll be here any minute, and you're very nervous: After all, They could be the one. It's the first time you two will meet, and you hope sparks fly. This could be the perfect match, or the worst. It's remarkable how choosing a rheumatologist is like dating. No two are alike, you get to know each other after time, you'll always remember your first, there might be lots of break ups, and somewhere out there is "the one." Seeing a new rheumatologist is almost always overwhelming, especially if it's the first time you're seeing them. Unlike your GP (primary doctor), you will (probably) see them more often than once a year and ocasionally when you're sick and need help. You will get to know your doctor, just give it some time and don't be discouraged. What matters at the very start is that they get on the right track of diagnosis or treatment if you already have a diagnosis. The first visit will probably...

I am quite aware we all have our own struggles with chronic illnesses. But I'm sure we are not too unique in the case that we all have experienced a long day of medical care. Whether it's infusions that take several hours, test after test, bad news and more bad news, or appointment after appointment, I'm confident when I say we've all been there and have done that. Recently I had a very long medical day. I wrote down my emotions and thoughts as the day went on so I could share with you later. 7.00 am, I am not pleased one bit. I may be up and out at this hour most of the time, but when it's for anything but work or school, I'm a zombie. Even then, I'm kind of the walking dead. The train had better not be late otherwise my whole day will be thrown off. 7.38 am, I love trains. Any time I don't have to drive is a good time. Just sit back, relax and watch the world go by. 8.29 am, The little cafe near the hospital has the best eggs ever. That and a gre...

Confession: Since I was about eleven years old, I have never gone longer than three months without a doctors appointment. Confession: I forget what it's like to not have to be see so often. My record for the longest time without a rheumatology appointment is three months, but that has on only happened a handful of times. Mostly I go every month or two, depending on my progress. I honestly can't imagine life without frequent hospital visits. And I don't think that's a bad thing either.  When we repeatedly do things that are typically unnatural and cause for alarm, eventually they become nature. A habit even. Whilst others consider going to the hospital quite a lot a bad thing, I began to see it as a good thing: It's an essential part in treatment of arthritis, and treatment is a good thing. I'm not ashamed that I need to be seen so often- my body is different from everyone's and it just requires extra care. And there are people who are seen more...

Dearest Reader, I know I have not posted in a long time: Usually Elizabeth posts exclusively. However, I have something rather important to share. "Have no fear, the Rheumatologist is here!" Signed, Arthur

I saw my rhuematologist. He said my increasing pain is normal because of the cold! He told me my Methotrexate would take care of it, and any damage. Thankfully, I only got away with giving a little blood for the visit. See you on the flip side, Elizabeth