4-Letter Words I Hate the Most
I’ve heard my fair share of four-letter curse words. Heck, they’ve become part of my everyday vocabulary over the years. I understand that using these words don’t portray me as very lady-like, but I promise that most times they are uttered under my breath. Now that I have psoriatic arthritis, my usual curse words are now accompanied by a whole new list that is not particularly bad to say, but do go right along with the disease curse.
Maybe I sat too long watching a movie in the theater. Maybe I have a hard time getting out of bed in the morning. Maybe there was a sudden change in the weather – I live in Michigan and it’s common to get -10 degree temperatures followed by 50 degree temperatures in the same week – that made every joint in my body scream. Unfortunately, for me, pain is inevitable with psoriatic arthritis. Even when my disease is not active, I still have some lingering pain. I just always hope it isn’t a full-on flare coming my way when I get sidelined.
For some people, eliminating certain foods from their diet helps manage psoriatic arthritis. I’ve tried almost all of them with no success. Every patient is different, and while I welcome doctor advice, I do not care to hear how going gluten-free will cure me. I’m so happy for those who do find results with diet changes. It just doesn’t work for me.
Stick, poke, or prod me. I can deal with needles. Just don’t ask me to take any oral medication. I’m the worst at being compliant with pills, especially daily ones. I know there is no point in filling the prescription because in three months, I will probably only have taken three days worth of medication. The same is true for vitamins and supplements. Yes, I know they are good for me, but I also know I just won’t take them. So, it’s up to me to have an open conversation with my doctors to see if there is a different medication I can take that doesn’t involve swallowing pills.
I’m an active person. I always have been and try not to let my psoriatic arthritis keep me down. I’m also a realist. I know that even when my disease is well managed there are many times my body screams at me to rest. Fatigue creeps in, and sleep is often the best thing for me. I hate giving in, but I know in the long run, I’m much better to listen to my body and accept that I can’t be Super Woman all the time.
Along with psoriatic arthritis, I also have psoriasis, and for me, they usually don’t flare at the same time. When my skin starts to itch, I know I’m in for a bout of psoriasis. Soon I get plaques on my back and scalp, and it’s back to the dermatologist for more creams and ointments, which I enjoy only slightly better than oral medications.
Being on biologics mean my immune system is suppressed. Even so, I think I do a pretty good job of avoiding the germs. I wash my hands often. I keep away from coughing adults and run in the opposite direction of children with runny noses, but I don’t isolate myself, and I do want to enjoy the world. Usually a few times a year, I get a bronchitis, strep throat, or mono – any of which would set back a person without a chronic disease. For me, I can count on two weeks or more of trying to shake the illness. Who has time or energy for that?
Name-calling and assigning labels like “gimp,” “broken,” “lazy,” or “faker” to me strikes a chord deep down. I try to remind myself that those who name-call are just ignorant of what psoriatic arthritis is and how it affects every aspect of my life. It’s not easy, and many times I don’t have the energy to engage, but I do make a priority to educate them and hope they take a second look at the words they use.
I recently came up with a short script and say it when I need to: “I have autoimmune arthritis. Some days, I have a lot of pain and am very, very tired. Today is a bad day. I hope you see me on a good day.”
HOPE, LIVE, CURE
Because I always want to be positive in spite of this disease, I put these words at the top of my aspirations list. Never lose hope. Live life the best you can. Help find a cure. If I can do these three every day – even in small ways – psoriatic arthritis will never win the war.