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I had never thought of myself that way … professional patient. I like that. I spent 2.5 hours with my rheumatologist yesterday getting xrays, bloodwork and setting up a start day for new medicine. I have to go back for a TB test next week. After that I went home and had to crawl around on the floor of my shop taking a steering link off of my riding nower. I drove 80 miles north to my dad's house and cut and welded a new piece on the link (I don't have a welder) then on the way back stopped and took my daughter out to dinner last night. It was 10 pm when I arrived home and I was hurting so badly, I could barely walk from the truck to the house. All in a days work for a professional patient. Oh by the way, you're beautiful. Never let what anyone says cause you to think otherwise.
I think all of us can relate to your day. I guess that is why I just stay home.
You have a great family to help you. Bravo to them.
I stay home most of the time too.
Yes, I could not do it without my kids! Kinda scared about when they grow up and are gone. :/
My kids are 30 and 32 years old and they are still nearby, checking in every day with me, asking how I'm feeling and seeing if I need anything. Not to worry! 🙂
LOVE LOVE LOVE the glasses! They are definately you! Aren't kids a blessing? I feel bad tho because it's way too early for them to be taking care of me. They shouldn't have to worry about that until I'm old and crusty. I'm only 39. I still have a loooooooooong way to go…..I hope. The perception of beauty is different for everone. If that cashier new you in the context that I know you, there is no way he would think that you aren't beautiful inside and out! Angie
Boy, Thanks for shring with us, Kelly. I can relate to so much of what you’ve written about your day. I was diagnosed with RA in 2007. I feel so fortunate that I had 55 active, healthy, wonderful years pre- RA to raise my 3 children, be a K-2 teacher 10 years and do all the mom activities without a thought of the pain and disability that goes with my daily life now with severe RA. I just wish I could feel better to be a better grandma to my 6 little sweetheart girls all under 5. I wish I could just jump in the car and go visit and help their mommies and play and do things with them. I keep on trying meds, unsuccessfully so far and feeling crappy with side effects, trying to keep hopeful that there is a med that will help, if not at least hold off or slow my progressive disease. I’m trying to be patient with my newest med, Actemra-one week since my first infusion -I have to keep optimistic and hold on to hope that I will see some measurable improvement amidst the side effects (not as bad as with the others), fevers, fatigue, pain and immobility. Here’s to all you professional RA patients-I wish you all better days ahead. All we can do is do the best we can and thank goodness for those people in our lives that we love so much and show us love. Bless them everyone.
Awww, it hurts me to read your post, remembering. I know it seems endless and discouraging, but maybe you’ll get lucky and find just the right cocktail of meds that will really help you, as I have. Either that, or with age, it sort of burned itself out! I’ll never know, because I don’t plan to go off the meds to find out. Yes, I have deformities that are troublesome and somewhat limiting, but to go from not being able to lift a cup or sign my name to being able to write and type, to get up and down from chairs, and rarely have flares? Heaven! I wish the same for you–keep your eye on the prize!
Oh my! I can’t imagine. Thank you for the encouraging word!
Hi Kelly,
‘Pace yourself’ is what I’ve learned through experience. This is a marathon, not a sprint. I don’t have tasks that I can ‘do on the way’, I have single function trips if I have any and my aim is to get through that and only that.
If I go to the supermarket, I don’t do any other errands along the way. I know I’ll be exhausted by the time I’m finished, so i don’t plan on doing much else for the day.
My week is planned around one major task per day if any at all!
Keeping in mind that these days, my arthritis doesn’t seem to be as angry as yours (although there are days!), and I don’t take anything but pain meds so i don’t have too many side effects to deal with.(just deformities)
After over a decade of active RA, I’ve learned to allow myself to recognize practical limitations, and pace myself accordingly, otherwise I spend all my time recovering from overdoing it! I’ve found that letting go of what isn’t absolutely necessary and focusing on what is also helps. No more ironing for me and my husband also knows that he cannot ask ‘while you’re out could you pick up…?’
Hope you find the right mix of meds and pace.
Cheers
Tracey