Monday, March 3, 2014

Back to the basics, a.k.a. what I can do, now that my prednisone has kicked in!

Relief at last! Per my post on Friday, not only did my doctor add Cellcept to my medication regimen at my most recent appointment, he changed up my prednisone a bit, giving me instant relief in the mornings. He suggested we add 2.5 mg to my daily dosage, and that I take that 2.5mg at nighttime. I'm to continue administering the 5mg I've been taking daily in the morning. It seems to be just the right combination to get me through until my Cellcept takes effect. We're taking it one day at a time, but things are looking good!

Now that I have the functionality of my joints back (particularly my hands) between the hours of 8am and 1pm each day, there are a few things that I need to tend to. Granted, I won't be engaging in any four-hour calligraphy sessions - just getting back to the basics of my day. Here's what I'm going to tackle: 

Sewing: My family's garments appear to have gone downhill since my joint pain flared! At last count, Bernadette's winter coat had all three snaps missing (both sides of each snap, in fact) - leaving her with absolutely no way to close her coat. Eek! Thank goodness she has a heavier coat that's been able to get her through. One of the three snaps fell off earlier this winter, so I seized the chance to sew it back on during the end of my 10mg taper. (I had three days when I was completely pain-free, before I went down to 7.5 mg, so I tackled it then). Unfortunately, two weeks later, it came off again. At that time, I was knee deep in steroid withdrawal, and couldn't find a pain-free moment to work on it. Sure, between 5-8pm I was feeling pretty nimble...but sewing was the last thing I could tackle during the dinner/bedtime routine, as you can imagine. But now - I have my needles and I'm ready to sew. Bernie's coat, along with a couple of items for Deirdre and Johnny, will be back in action, just in time...for Spring. 

Eating my choice of breakfast: My favorite cereal, Oatmeal Crisp, has had to take a back seat during the last month or so. Most mornings, I was waking up with terrible joint pain in my jaw, and the crunchy, albeit delicious cereal was just too much for my jaw to handle. I'd resorted to pancakes, smoothies, and eggs, which aren't bad alternatives. But I was craving my fave cereal and the ability to crunch away. Now I can!

QC'ing my Pillbags - While the ease of the zipper pulls makes the pillfolds ideal for arthritic hands, I found that doing efficient quality control on 150+ pillfolds wasn't quite so easy! I had a huge shipment of inventory arrive just after Christmas, but I haven't had a chance to check them because of my joints. Even checking 10 of them adds up to 80 zippers at a time - which can be too much for really swollen digits. But now that my fingers are up to it, I'll be checking those bags in no time, and getting the Pillbags stocked and ready for Mother's Day.

Buckling the car seat - I temporarily offloaded the buckling of Bernadette's car seat to Deirdre, and it was wonderful of her to step up to the plate. It usually added 5+ minutes to our departure time, however. The girls would get to giggling, or Bernadette would want to do half of the buckle, or any number of distractions would occur, so it wasn't quite as seamless as it could have been. I figure I'll let Dee and Bee continue to help now and then, but it will be nice to resume the responsibility and make an attempt to leave on time. (Note that buckling a 5-point harness car seat could have been the single, most painful action required of me each morning. It was murder on my joints. I'm sure many of you can identify!) 

Doing hair - The hair styles of the Gorman girls have probably taken the biggest beating during this flare. I haven't used the flat iron on my hair in a long time, and the few times I have, it was conveniently before going out for the night, during my prime pain-free slot of 5-7pm. And Dee and Bee have had to forgo what they call their beloved "Elsa" hairdo - a side winding french braid that ends in a bun. But my magic styling fingers are back, so the ladies of the house will look ravishing once again! 

***

There are a few things that we actually won't be going back on. Here are the workarounds that are worth keeping, among others:

Dee and Bee will continue making their lunches - I would never force the girls to make their own sandwiches, but they really seem to enjoy eating their own creations. And, given a little guidance, they do a pretty darn good job. I've started doing it more often than I was, but I'll continue to take a back seat as long as they'll let me. Watching Bernie spread peanut butter is one of the cutest things ever! 

Going to bed at 10pm - A ten o'clock bedtime really seems to work well for me. It does cut short our evening a bit, but we've pretty much adjusted to doing all we need to between by 10pm. It really has been an improvement in my routine, so the early bedtime stays.

2 comments:

Lee-Anne Weise said...

Hi Sara

Your blog has helped me with my own recent Lupus diagnosis and journey
and today inspired me to write a blog post about my lupus on my Blog
It was kind of a big deal for me as many if my friends and colleagues don’t know that I suffer with Lupus and those that do don’t seem to understand the disease. I’m hoping that reading the blog post will encourage the to ask me questions or perhaps encourage others to have a conversation about Lupus and how it can affect its suffers
If you guys could read it I would appreciate it and if you could leave a comment I would love it!
wotshernameagain.blogspot.co.uk

Sara Gorman said...

Congrats on launching your blog! Your writing will undoubtedly be a conversation starter - i think you'll find it's a major game changer in your life with lupus! I'll be sure to stop by, and thanks for the kind comments. I really appreciate them!