I did it twice this morning, after mod MichaelinVermont and I had a discussion. Instead of using “arthritis”, I use ARTHROPATHY.
What I said was “I have psoriatic arthropathy, it’s a disease that destroys joints”. The second time it was “I have psoriatic arthropathy, the joint-trashing disease that people with psoriasis get. Ya, I see you looking at my skin. I only had it in my nails and it took them years to figure it out. Meanwhile, I lost my …” (you guys know the rest of the story).
Both people expressed wide-eyed concern. And NOBODY told me about the arthritis in their little toe and how that sucker ruined their golf swing.
It's actually more accurate. If I remember my long-ago Latin/Greek, -itis means "inflammation" while -pathy means "disease". For anyone who's had this for a time, the problems go well past inflammation. Besides, if it keeps people from telling us that organic, gluten-free cherry juice will fix us right up, we're all ready to use a new word!
Oh my goodness, I can't tell you how many well-meaning (I suppose, anyway) friends and family members call me telling me of the latest thing they heard that helps inflammation. I've heard about the cherry juice, krill oil, an herbal compound called Boswellia, and on and on. I actually told a friend today that the "green juice" that Dr. Oz is a proponent of could be made cheaper with the grass that is growing quite well in my yard! My 90-year-old mother-in-law is always telling me about the latest ointment or cream that her friends in the Assisted Living Center are using, and how it would help me.
I've just returned from an ophthalmologist who diagnosed me with episcleritis, an inflammation of one of the layers in the whites of my eyes. I practically scared my little grandchildren to death when they first saw me with blood-red eyes all around the irises! So now I'm on a regimen of steroid eye drops, four times a day for possibly a few months. All because of the psoriatic ARTHROPATHY. I told him my plan had been to keep all my inflammation at a level below the chin, but it was not to be. I have had to relinquish my anti-inflammatory medication because it, along with some others I was on, caused my potassium level to rise to critical levels. So, without NSAIDS, it has impressed me all the more of how important it is to stay on the methotrexate and Enbrel to try to slow down the progression of the disease, and also for some inflammation help.
I would truly eat the grass if I thought it would help calm down some of the symptoms of this disease, but I suppose it would only add fertilizer and weed-be-gone to an already compromised immune system! LOL
Louise said:
It's actually more accurate. If I remember my long-ago Latin/Greek, -itis means "inflammation" while -pathy means "disease". For anyone who's had this for a time, the problems go well past inflammation. Besides, if it keeps people from telling us that organic, gluten-free cherry juice will fix us right up, we're all ready to use a new word!
LOL, Swede … how many of us have endured how many “well meaning” bits of advice from people who know absolutely zip about what’s wrong with us! And your experience with episcleritis is a good lesson for all of us.
Are you kidding, Sybil? Two people asking me how I am? LOL This world is divided into two groups: those who know what’s up, and don’t want to remind me, and those who figure I look fine, no problem there. Yesterday was a bit of a fluke. I was telling the lady in the insurance office about how great my hip replacements are (she needs knees) and when I turned to go, she saw my cane and looked puzzled. (Obviously wondering why I would need a cane if my joints are so fab.) I picked up on that and explained about Psoriatic Arthropathy, and how it had trashed my feet.
Minutes later I was in the supermarket, and met a person who has been a neighbour at the other end of the street since 1977. Don’t do the math, I don’t want to think how many years that is. I rarely see her, but we are comfortable enough that she said “What’s with the cane?” I explained about Psoriatic Arthropathy. Then I asked what was with the elastic stocking on her arm. Breast cancer. Oh dear oh dear. Poor woman.
So Sybil, it’s actually a rare occasion on which I can pontificate on my condition!
Yep that’s a good move, and I notice its what has always been written on my sick notes, so we will be using a more accurate term…giggle of the day? I keep seeing Sybil chasing people down the street waving her stick!
I have to tell you something funny, seenie! Today I was looking online at"my chart" with my clinic. I was reading the list they had entered as my medical problems. They had psoriasis listed but not psoriatic arthritis. I was like, what? Why don't they have my PsA listed??? Dorks!!!! Then I noticed it was listed as psoriasis arthropathy. I guess that's correct!?
Good one Seenie! I have been trying, “I have autoimmune arthritis disease”. The autoimmune and disease seems to steer the conversation away from the typical arthritis responses. I am glad for the compliments you look so good, but not when they are thinking you can’t be that bad. One pain free day would be heaven, in our case probably literally, lol. But, we are one tough bunch and we continue to blast our ways through life even at times when we feel like throwing in the towel!
LOL, tough birds that we are! “Autoimmune psoriatic disease” would distract them pretty well too. The trick is not to give them the “arthritis” hook to hang on!
Nice to see you posting, Georgia!
I did just the opposite today. My boss just quit at the same time I am starting a new med. I needed to say something to the big boss in case I can’t make it in while adjusting. While I am a very vocal advocate for our disease even at work, now is NOT the time to tell my SVP my whole story. The person in the position before me passed unexpectantly so he is always concerned about health issues at work. So I just said I am on maintenance medicine for arthritis that may take some getting used to. Sympathy received for how he too found arthritis meds harsh. Lol.
