I’m Sorry. I Don’t Have That Disease.
I can’t tell you how many times I am approached about having a certain disease and wanting information on it. The conversation usually goes like this:
“Hey, Jaime. You have rheumatoid arthritis. What kind of medication do you take?”
"I’d be happy to help, but honestly, I’m sorry. I don’t have that disease. I have psoriatic arthritis, which manifests very differently."
Keep the conversation going
While I understand that I have a form of arthritis, there are more than 100 different kinds. I only have experience with one of them. I’m sorry. I don’t have rheumatoid arthritis, osteoarthritis, gout, or rheumatoid psoriatic arthritis (is that a thing?). I also don’t have osteoporosis or eczema.
I have psoriasis and psoriatic arthritis. But mostly, I have compassion, and I’m willing to listen, so let’s keep the conversation going.
You say your doctor wants you to lose weight because the extra pounds are putting too much stress on your knees that are swollen from osteoarthritis? And to lose weight you need to exercise, but that exercise is painful? Oh, how I can relate!
Have you tried swimming laps in a warm pool? That really helps my joints feel better, and I have lost some weight at the same time. Once the weight starts coming off and your knees feel better, you could try yoga or walking the nature trail for a different exercise routine.
I’m sorry I don’t have gout, but I do have enthesitis in the bottom of my feet, inflammation where the tendons and ligaments attach to the bones. And boy, does that hurt! I understand the pain and frustration of walking during a flare. Sure, it’s not the same, but I have some ideas that may help. For example:
When they hurt, I try to limit the amount of time on my feet. I gather everything I will need for a few hours and organize it nearby. Then I can elevate my feet and stay off of them. Would this help you?
You will almost always have run-ins with the insurance company, no matter which chronic illness you have. I’ve had many! I can provide some tips to navigate the insurance red tape to get that medication approved. If you need help with that, I’m your gal. I definitely have a few tricks up my sleeve. For example:
First things first. I suggest calling the insurance company directly and talk with a representative. Find out exactly why the treatment is being denied and ask for it in writing. It might be as simple as needing a prior authorization form from your doctor. If it is more complicated than that, find out what the next steps are or what alternatives the insurance company recommends. Sometimes there are loopholes and you just need to sneak your way in.
Medication side effects
Many of the medications I’ve tried or are currently taking have been approved for more than psoriatic arthritis. Even if I don’t have your disease, I might be able to commiserate with you when it comes to side effects. For example:
My stepmother had a liver transplant a few years ago. She was placed on a very high dose of steroids to help ensure the surgery’s success. She thought she was going crazy because she didn’t feel like herself and was panicked and fearful. I was able to figure out that it was the side effects of the steroids because I, too, had that same feeling when the doctor prescribed too much for my body.
It is a scary feeling like you don’t have control over what is going on. And yes, her steroid dose was much, much larger than mine, and her side effects were extreme compared to mine. But, I could relate to what she was feeling and was able to let her know that she wasn’t crazy, and that made a big impact.
From one chronic condition to another
So, while I can’t give advice on a specific disease – after all, I’m not a doctor – I can offer you a shoulder to cry on, an ear to listen, and a sigh of “been there, done that” when it comes to managing a chronic illness.
I won’t discount your pain, frustration, or what others may perceive as laziness. And sometimes, that is the best medicine for the moment.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?