I'm due for a Remicade infusion next week, but have been taken off of it pending liver ultrasound (had yesterday) and bloodwork results (will get done next week). My rheumy is out of the country until OCTOBER, so I'm looking at a month unmedicated, unless I can convince someone in his office that the rheumy available for "emergencies" needs to prescribe me something. Every day I feel worse, and it doesn't help that we're having some family issues at the moment, are totally rearranging bedrooms and the rest of our house, and have a million and a half things to do. I've added forearm crutches to my aresnal, but am still awaiting the arrival of my ergonomic grips so I can actually use them.
I feel blessed that September is a month of relative quiet in my household, as I don't have anyone else's kids in my care. This means I can rest more (once we get the house in order!), sleep later, and get a better perspective on just how good I feel on biologics!
Sorry I haven't been around more. Things have been crazy here lately!!!
What a small world, we are changing bedrooms at our house after all ready surviving a new roof and windows! My husband and I are taking over my son's room as he has left for college and it is sunnier and bigger than our old room. Of course he painted it bright, lizard green which I decided was too bright for me. My husband (who is wonderful but is still a guy...) is painting it for me a lovely mid range blue with grey in it, really pretty.
My thoughts and prayers are with you Nym. I hope you feel our support.
Thanks, RB, Michael, and Seenie. Your support and kind words mean worlds to me.
I'm try to take it easy and be gentle with myself. The most difficult part at the moment is looking at all the work that NEEDS to be done, and not being up for the task. I need to get my living room and dining room in order by this weekend, so hopefully my husband and kids will do lots of work tomorrow on my husband's day off. I'm going to leave a list for them while I go to my parents' house to pick up contributions they have for a tag (yard/garage) sale I'm doing with a friend on Saturday - and take a nap in the peace and quiet of a house without kids! I will hopefully feel less stressed once our main living space is organized and clean. Well, as clean as it can be with five kids... LOL
Taking lots of deep breaths and remembering to take this as a cue to slow life down once again. :)
You must be terrified, especially having had success with the remi. You are going to have to seperate things though...... A new school year brings HUGE challenges, Its worse with home schoolers. just the change in weather patterns (morning dew etc) sets kids off a little (even great kids) and stress levels rise. (stress of course really fuels PsA) It'll get done, it ALWAYS does...... Set a timer ( or cell phone in vibrate) in your pocket to go off every 30 - 45 minutes. to tell you to stop, some deep breathing visualize the next part of your task as done take some water and then move on.
Great advice lamb. Nym - needs vs wants - we work on that a lot in our family since I got sick. The kids and I make a list each day (well some days) - what each person wants to do, and needs to do. Keeps us all in a more realistic perspective.
Thanks everyone! I'm a HUGE fan of needs vs. wants and make those lists every day. I also have the benefit of five kids, two of whom are motivated by wanting their own rooms, so the furniture moving and house rearranging tasks are delegated to the teen / tweens of the house...and my husband when he's not at work.
Today I got computer work done, took the kids to the park (they ran around, I sat in my wheelchair and chatted with friends), rested at home, and enjoyed the fact that my 10 year old asked if she could make dinner. I did get most of the shelving unit cleaned off and taken apart, one shelf at a time.
My issue today is that I feel sick when I eat, and sick when I don't, but know I'm not sick. I have no idea what it is, but it's freaking me out slightly.
I have the same thing at times. I blame it on NSAIDs or mtx but never know for sure what causes it. I also get very stiff jaws at times which I think is the PsA as it happens when the inflammation is a problem. I eat grilled cheese and sliced apples and ice cream when it happens. It makes me feel all better; almost wish it happened more often! LOL! Hope this helps and you are feeling better soon.