Aaaaaah....back from a long weekend at Camp Calumet in New Hampshire (USA). I'm feeling so much better emotionally, mentally and spiritually. It was just what I needed. Quiet time by the lake, fun times with my husband and kids, and conversations with new friends that will lift me up for years to come.
Physically, however, I'm doing horribly. I'm on an un-helpful dose of prednisone. I can take ibuprofen through Saturday, but then need to go off of it for a week - not that it's helping enough for any quality of life. I'm hoping to talk to my rheumy today to get him to up my dose of prednisone. At the moment I have swelling in my fingers, hands, wrists, elbows, shoulders, neck, chest, knees, ankles, feet and toes. Walking is incredibly painful. Canes are out due to my hands/arms. My wheelchair is useless in my house.
I have a liver biopsy scheduled for Thursday of next week to (hopefully) rule out autoimmune hepatitis. I, in a moment of optimism, scheduled my first remicade infusion in waaaaay too long a week later. I'm unsure of how I'm going to make it through the next few weeks - or longer if I'm unable to resume remicade treatment.
For now, I plan to rest as much as possible. Today I'm taking care of a four-year-old, so basically getting paid to have one of my kids' best friends here, entertaining her so I can rest. LOL Tomorrow, I'll have an 8 month old in my care, who at this point isn't very mobile, so will be able to play with him and read to him lots while taking it easy. I'm cancelling a meeting I have on Thursday and spending the day resting, as we have homeschool co-op on Friday and that will take all the energy and medication I can muster. LOL
Have the Coop meet at your house, tell everyone to bring a main dish for a potluck.
When they show up, thank them for the dish and how appreciative they took time to think of you. THEN tell them it looks delicious, and they should bring to the coop potluck next meetin,
If you do it right you shouldn't have to cook for a week or so...... (Some might even bring back dessert)
When i went off the mtx, due to elevated liver labs, i still got the Remicade, 900 mg. I know some ppl cannot take mtx, but it works so well for me. My Remicade wore off, after a few weeks, and then terrible pain, the worst i ever had, so i had to also take prednisone. Unfortunately high doses.
They are still watching my diagnosed fatty liver, and let me take 6 mtx pills now, and it's made a world of differance. And they let me take Celebrex now, no more NSAIDS. Liver is slighly elevated
I hope you feel better, and things click in place. The pain was worse for me while trying to sleep, and i use ACE bandages, on various body parts..LOL
The co-op meets in a renovated warehouse - 5 class periods, 7 classes offered each class period - so not something that can meet at my house. It would be nice, though!!! My husband has the day off, so will be doing most of the "work" part of getting things in and out of the van, and once there, I can basically hang out until it's time to teach. I have a small class this time, so it should be relatively easy on me. My husband definitely realizes how much pain I'm in, because he knows my threshold is HIGH and I'm never vocal about my pain - but have been very "noisy" in my pain these past few days (sharp intakes of breath, involuntary screaming LOL), so he'll definitely take the reins. Co-op is handicapped accessible, so I'll definitely be bringing Ziggy (my wheelchair) along.