Friday, August 30, 2013
And now that I'm back in a two-story house (as opposed to the smaller rental house where I could practically grab a water out of the kitchen refrigerator from my bed), my Pillfold is on the move daily. I tend to take my morning pills with breakfast, so now I'm carrying my Pillfold downstairs in the morning, and carrying it back upstairs in the evening. I'm so glad I'm not lugging around a clunky, plastic pillbox, risking that it would spill going down the stairs in the morning (because I'm inevitably carrying way too many things down at the start of the day), and that it's not cluttering up my new kitchen counters. No place for ugly plastic in this swanky new place!
Be sure to order YOUR brand new, very pink Winchester today.
Wednesday, August 28, 2013
Monday, August 26, 2013
Moving Day!! Lupus lesson #351: Share your plan to ask for help so you can't talk yourself out of it when the time comes!
First, here were three things I considered on the actual day we moved:
1) Get help: Done and done. We had a babysitter help us out in the morning, and then my in-laws arrived mid-day. Check!
2) Secure quiet place to nap: I could have merely hoped that the moving festivities would conclude by 3pm, or I could find another place for Bernie and myself to nap. My sister gladly offered a room at her house while they were out of town...so Bernadette and I headed over for an afternoon siesta. I made a rookie mistake, however, and didn't take anyone along with me in case she didn't nap. I had every intention of asking one of my in-laws to grab a book and come with me to listen for Bernie. But when the time came for us to go nap, it just didn't...seem...necessary. I was feeling good, Bernie seemed tired, I didn't want to inconvenience anyone (they were already offering to go clean up at the rental house), and bottom line, I got too cocky. I got a whiff of "I can do this all by myself", and decided to just run with it.
How could I have eliminated the temptation? By cluing in Johnny and my in-laws to my original plan. If I'd just mentioned earlier in the week, or even earlier that day, "Hey, when Bernie and I go nap, I'd like someone to come with me in case she doesn't fall asleep", there's no WAY they would have let me go by myself. The plan would have been established, I couldn't have weaseled my way out of it, and I would have gotten a nap. In the end, I fared okay. But it just goes to show that you really have to set yourself up to succeed, if you plan to do so!
3) Unschedule myself for the few days following the move: I made sure we were pretty free and clear for almost five days after the move. Deirdre had a swimming lesson two days after the move, but I figured that would get us out of the house and away from the boxes. I thought it would be a welcomed break, and it was!
Here are two quick pics I took the last night we were in our rental house. Here's what I'd been staring at for the last nine months, and below that is a shot of what I had to look forward to in my new bathroom. I've officially been upgraded!
Friday, August 23, 2013
Wednesday, August 21, 2013
Once again, here are three more helpful hints from the list my architect sent me, all of which hit home for me:
*Choose when to choose - prioritize:
Just as I mentioned above, the import of the decisions we have to make with lupus vary. Just make sure you spend time on the ones that matter most, and are going to have a lasting impression. Let the other ones fall by the wayside. Let's learn to save our energy for the biggies!
This has been instrumental in helping me make good, efficient decisions. Now that we're back in our house, with each day comes a new opportunity to push my limits or overdo. Maybe it's unpacking one too many boxes in a row, or pushing my nap off because I'm in the midst of searching for a new shower curtain online. Whatever the reason, I'm able to see the results of my good (or not so good) decision making almost immediately. When I choose well, I feel the positive physical effects the following day, which makes me thankful for the wisdom I used in the first place. And that only makes me want to make more good decisions moving forward!
Is this the crux of lupus decision making, or what? With a chronic illness, there are decisions we're going to make that others might not understand, agree with, or support. When we don't look sick, it doesn't make sense why we have to take it easy, stop to nap, or forgo an evening out. But we have to have faith in ourselves that no matter what other people may think, we need to make the decisions that are right for us. And it's in our best interests not to consider what someone else may be capable of. What's important is that we figure out what we're personally capable of, and that we do everything we can to work within the confines of those limitations so that we can continue to live well, despite our illness.
Tuesday, August 20, 2013
In yesterday's post, I made mention of the book on decision-making that my architect recommended. After confirming the title, I wanted to share: "The Paradox of Choice: Why More is Less" by Barry Schwartz.
Look for more on the choices we make (and have to make) with lupus tomorrow!
Monday, August 19, 2013
Same is true with lupus, right? Whether it’s deciding on a new medication, a different doctor, or an alternate way of managing the disease, the last thing we want to do is waste time, energy, or money. We want the choices we make to be good ones, so that we can continue re-building our life, with lupus in tow.
Here are a couple of points from that list. Look for another couple in an upcoming post. Yes, they’re that good to warrant separate blog entries!
This one is SO relevant for me. I can be such a perfectionist, to the point where I don’t make a decision because I don’t want to make the wrong one. But I’ve found there are very few decisions that are absolutely right…it’s just the choice that’s right at the time you make it. Kind of takes the pressure off, don’t you think? I remember making the decision to start Cellcept. I was so worried that it wasn’t the right time or the right circumstances to start the drug. I was waiting for the perfect scenario, but eventually realized there was no perfect scenario. I just had to make the decision that was right for me at that point and time. And I’m so glad I did. It literally changed my life! (You can read about all that here.)
Oh, how true this is. When I decided to go part-time at work years ago, I struggled with the decision immediately afterward. Would we be able to manage financially? Would I feel under-utilized? Would it be the end of my career? As I contemplated these things, I kept thinking that going back to work full-time would instantly eliminate these concerns. But I was forgetting the reason I left full-time work – because my health suffered because of it. Once I fully accepted this fact, I was able to positively embrace my decision to work part-time – re-shaping my understanding of the life/work balance, and re-establishing my identity, given my new circumstances.
Wednesday, August 14, 2013
But you can never be sure if the two little ladies ruling this roost really get it...although this past week, it was confirmed that they at least know enough.
Tale #1: Last week, after I put Bernie down for a nap, I was running around, trying to unpack just one last box before heading upstairs to nap myself. Deirdre looked at me, looked at the box, and said, "Mom, don't you think it's time for your nap? If you don't rest, your lupus is going to get really bad."
Yes, Deirdre, you're right. One point, daughter.
Tale #2: A few days ago, I overheard Deirdre and Bernadette playing princesses. Clearly, Dee was in charge, and she was doling out tasks to Bernie. She said, "Guard, your only job is to make sure that the queen takes a nap."
Oh my. Am I in trouble or what?
Tale #3: It was cloudy a few days ago, so the girls and I headed outside to do some much needed gardening (clouds = shade for me, and cool temps for the gals.) We all put on our gardening gloves, doled out the spades, and went to work. I'd planned to pull weeds in at least one section of our "garden" (a loose definition, mind you), which should have taken about 30-45 minutes. Granted, that's about twice as long as my arthritic-prone hands can take, but a task is a task.
After about 15 minutes, Deirdre declares she has to go to the bathroom. She runs inside, and Bernie casually follows in after her. I, of course, have no intention of stopping, since we were only halfway finished. But when I hear Bernie rustling around in the mudroom after a few moments, I peek my head inside. There she is, gloves off, shoes and socks removed, heading to the sink to wash her hands. I ask her what she's doing, and she declares that we're finished gardening. I say, "Oh, Bernie...we still have a lot of weeds to pull." And she says, "No, Momma. We're finished with weeds. It's time to come inside."
Now, I know she wasn't personally monitoring me or my joints...but whatever timetable she was keeping, it was better than mine. I, of course, followed her lead, packed up my spade, and went inside. My joints thanked me for the days that followed.
So while the boxes aren't unpacked, and the garden isn't weeded, I can rest easy, knowing my girls have the lupus basics all wrapped up.
Monday, August 12, 2013
Because the disease varies so, the treatment and lifestyle alterations that work to combat the symptoms for one patient might not work for another. Of course, there are general therapies that tend to work, since symptoms like joint pain, fatigue, hair loss, and rashes are so common in lupus. But even those may range in severity, such that the result differs from person to person. In fact, I've discovered that even though something is a sure-fire solution for me, it might not work for someone else. That's why it's so important to track your own disease activity in a way that can help pinpoint what's working and what's not - be it medication, lifestyle factors, or environment. Self-awareness is the key to making sure you take the necessary steps toward staying well. Here's what I mean:
Nap: I went to visit a girlfriend of mine a few months back, who also has lupus. I made sure I worked in a nap the afternoon I was there, and since I was napping, she decided to give it a try herself. I slept for a whopping 2 3/4 hours, and she...didn't really nap. It just wasn't working for her. She was uncomfortable, couldn't sleep, and aggravated her back in the process of trying to rest. Clearly, taking time in the middle of the day to sleep isn't a good option for her. She knows her body best, and I'm sure she'll settle on another way to relax and recharge mid-day. Perhaps meditation, reading, or even yoga might fit the bill.
Vacation: Another girlfriend of mine was in the midst of a flare about a year ago. She had a week's vacation coming up with her extended family at the beach, and was debating about whether to attend or not. We spoke shortly before her trip, and I told her that for me, a trip to the beach - in the heat and sun, away from routine, without the help of a babysitter, and with family obligations to consider - would have been the perfect catalyst for disease activity If it had been me, no way would I have gone. But, her instinct told her to go, and so she did. She told me later it was the best she'd felt all summer. Her husband was there to help with her kids, she had the distraction of new surroundings, and she wasn't stuck at home, thinking about how crummy she felt. I'm so glad she didn't heed my advice!
Working: A devoted reader recently wrote in about her approach to working full-time. She said she felt she could have written several chapters of my book...my story was her story to a "T"! She even chose to stop working at one point, also in an effort to curtail disease activity. The only difference was that once she left her full-time job, she saw less improvement in her emotional and physical wellness, not more. She wasn't as busy, so she felt she had more time to stew about lupus - the medications, the doctors, and the symptoms. She also really missed being surrounded by people, and felt isolated at home all day. Realizing she needed to tweak the changes she made to her lifestyle, she started looking for a low-stress, part-time job close to home. She found one, and within a few days, she noticed a real improvement.
There you go - different strokes for different folks. It can take some trial and error to figure out what helps and what hinders your disease activity. But if you listen to your body, and work on recognizing how you're feeling and why, you should be able to make decisions that are good for the health of the one who matters most -- YOU!
Friday, August 9, 2013
Wednesday, August 7, 2013
The best part has been tossing stuff into the donation pile as I unpack. I'd say every third or fourth box has been donated. I'm going through every single thing, but I'm glad I had the forethought to pack many of the items I thought might be obsolete together. Thus, choosing stuff for the donation pile has been more about keeping the momentum going, rather than feeling torn or sentimental about things we really don't use, need, or want anymore.
I did find one thing that I was very sentimental about - and that's a hair magazine I've been holding onto since 2005. I actually remember packing it up nine months ago, and I had every intention of keeping it then, just as I do now. Here's the cover - and here's why I'm keeping it:
Almost 10 years ago, I had a bout of hair loss that completely wiped out my thick head of dark, lovely hair. I had only strands left to wrap around my head...and it was a pretty dire situation. You can read about the whole ordeal here, and see pictures of what I looked like (and felt like) after I cut off those strands. Once I mustered up the courage to cut off my hair, I must have looked through this magazine 20,000 times over the course of about a year. Each time I flipped through its pages, I grew increasingly comfortable with my short new 'do, and quickly learned to enjoy the benefits of short hair ( e.g. going in for a "trim", and coming out with a whole new look...simply because you can!) Of course, along with my "look", I was coming to terms with my illness and the idea of embracing the disease, rather than wasting so much time and energy fighting against it. The moment (and I mean, the moment) my hairdresser cut off those strands, I felt like a whole new person. It was one of the best things I've every done.
So when I flip through this magazine, with its tattered pages and folded-down corners, I literally tear up. It was such a cathartic time for me, physically and emotionally, and it really was the beginning of a whole new era. As I pored over those pictures, I learned how to celebrate the fact that I had reinvented myself in the face of lupus - gaining wisdom, self-awareness, and inner strength with every page I turned.
So while this magazine gets to stay, many other things in our household don't, and I'm thrilled about it. This, too, is the mark of a whole new phase of our life, and I'm happy to be starting it uncluttered!
Monday, August 5, 2013
I'll be back on Wednesday, with a full-length post about the roller coaster that is (or actually was!) our renovation. Looking forward to chatting then!