Small hotel room equals lupus change of plans - and that's okay.

When it comes to life with lupus, I found out the hard way that you have to learn to be flexible. Canceling plans, aborting vacations, opting out of social engagements - when lupus is afoot, you never know what to expect. It's no fun to have to pull out a plan B, but preparing yourself for that fact seems to be half the battle. For me, it was as if reminding myself, "You're in a flare...don't be surprised if "X" doesn't work out so well" seemed to at least set the stage (and my mindset) for a change in plan.

Which is what happened over the recent Christmas holidays. Thankfully, it wasn't a flare that caused the alteration in my plan...but it was lupus related. Here's what transpired:

A few weeks before Christmas, my sister, my niece Emma, Deirdre and I headed to NYC for a girls' weekend. We went up for just one night, but it was plenty of time to pack in two full days of fun in the Big Apple. Before we left, I knew the nap situation for Deirdre and me would be a little dicey, given the small hotel room we'd reserved. But I promised myself that I would be flexible and just let things happen as they needed to. That is, if the room set-up wasn't ideal for us to both take naps, I wouldn't force the issue. I'd let Deirdre's nap slide, and she, my sister, and my niece could go exploring while I took a nap. Deirdre rallies much better than I do, and although we had a big night ahead of us, I knew Deirdre could make it through. I, on the other hand, needed all the rest I could get.

On the way up, Deirdre was asking what we were going to do once we arrived, and we all kept with the idea that she and I would take a nap, and then we'd meet up with Katie and Emma later. We had a chance of getting upgraded to a suite (at least we were the last two times we stayed at this hotel), and if that was the case, then we'd both be able to nap without a problem. We checked into the hotel, and while there weren't any suites available, they were able to upgraded us to a larger room. Great - still a possibility that the room would be configured to accommodate both of us. (Deirdre doesn't nap so well when she can see others napping. She just thinks it's a big ole slumber party!)

We took the elevator up to the room, opened the door, and I took one look at the room and said to my sister something like "Abort mission...if you don't mind, Deirdre's yours for the afternoon." It was obvious that with two beds side by side, with no partitions at all, napping with the two of us in the room would have been a nightmare. And I could have forced it. I could have encouraged Katie and Emma to go exploring while Deirdre and I had some rest time. I could have rigged the computer so that she could have watched a movie and relaxed, or set her up with some books to calm her down. But you know what? That wouldn't have given me the full rest I needed to make it successfully through the quick up-and-back trip. As it was, we had been up early, we would be up late, and I was going to have to nap during our trip back to D.C. the next day. No - I had very little room for error...and so I made an executive decision. Deirdre would get a pass, and I would get my sleep.

Of course, she was thrilled...and I was lucky. My sister didn't have to offer to take Deirdre off my hands. But she did, and I accepted. Sure, I wish I could have given Deirdee the rest time she needed, but I had to think of myself first. Otherwise, I could have spoiled the whole trip for all of us.

My mother-in-law once told me that babies have a way of knowing what their parents need. I'm positive that sweet little Deirdre knew what I needed that day. She knew I needed rest, but she also knew that I needed her to keep it together. Katie said she was a perfect angel during my nap - as she was the entire rest of the trip. No overtired tantrums, no difficult 3-year-old shenanigans running on fumes...she was just as sweet as can be. Which made it so much easier to know that I did the right thing, and that I might just have to do it again some day.

Of course - at just 3 years old, Deirdre's too young to say, "You owe me one." But I know I do. That's why she's my absolutely positively favorite oldest daughter in the whole world. And you can tell her I said so!

Sleep, glorious sleep! The 12-hour remedy.

I've known for a long time that I need sleep. As I've mentioned before, I try to get an hour and a half to two hours of sleep during the day, and at night, 8 hours is minimum, 9 hours is ideal, and 10 hours is heavenly. This is just the way it is - and I figure if I can combat that debilitating lupus fatigue with extra hours of shut-eye throughout a 24-hour period, then so be it. Am I really missing anything? I don't think so!

That said, a few nights ago, after I put the girls to bed, I decided to lay down for a few minutes. That was at 8:30pm. Three hours later, I woke up - just long enough to do my nightly routine stuff and chat with Johnny for just a few minutes - and then it was back to sleep. At 7:30 the next morning, I woke up feeling like I could run a marathon. I actually stayed in bed until almost 8:30am, because the girls woke up late and Johnny headed them off because he figured I needed the extra bit of rest. And I guess I did!

I wasn't too surprised that I needed a catch-up night of sleep. I'd had some late night manufacturing calls with suppliers in other time zones, and Johnny and I have been allowing our bed time to slip into the 11:30pm realm...which we both know is too late. But what was so eye-opening about this almost-12 hour marathon, was that I woke up feeling so good. I was completely rested - and I realized that on those nights when I only get eight to eight and a half hours of sleep, I wake up tired. Not lupus tired, just the normal I-wish-the girls-had slept-later tired, or I-shouldn't-have-read-that-last-chapter tired. Nothing that impacts my day, but definitely something that I now know doesn't have to happen.

So now that I've had a taste of how rested I can be, I want to wake up that refreshed and ready every morning. It's just as the author of the article cited in Wednesday's post said - we don't know how compromised  our well-being has been until we've had a taste of how good it can be.

So it's back to a 10:30pm bedtime. That almost always ensures 9 hours of sleep at night - which is my sweet spot. I can try and convince myself otherwise, but it won't work. Now I have my recent 12-hour experiment to prove it!

Goodbye lupus - sharing a great article!

A girlfriend of mine sent me this article recently - it's a personal account of a woman who has lupus, but has recently been given a clean bill of health. That is, her symptoms are what I would call "clinically quiescent".  Titled "Goodbye, lupus. You don't own me anymore.", it's a great reminder of the hope and possibility that's out there for all of us. Below is one of my favorite paragraphs from the piece - but the whole thing really is wonderful. You can read the entire article here:

As human beings, we all experience situations in which we have to adapt, physically, socially or environmentally. It amazes me to know that we can get used to just about anything and how quickly we forget about the beloved “old ways” of our past. I accepted my symptoms and the indescribable fatigue as status quo. They were rarely challenged, perhaps because I was just too darn tired to challenge them. It was only in health that I came to realize how sick I was and how compromised a life I had lived.

Pulling an all-day-er just isn't for me!

While I’m not exactly what you’d call a “working girl”, my travels for my book and my recently launched toiletry bags are definitely keeping me busy. My bags are taking a little longer to ramp up than I'd hoped, but between manufacturing woes and patent protection, I’ve just had to be patient and wait on announcing them to the world. 

But I have learned something, just in the few experiences of selling my bags. And that is this –  the all-day trade show/gift show/exposition and holiday spectacular scene is not an ideal fit for someone like me. Standing for hours at a time – working all afternoon – I'm just not capable of working that way anymore. Don't get me wrong - I love all the hustle and bustle that's involved. The other vendors, the customers, the energy surrounding the events - it's wonderful. But what's NOT wonderful is that fatigue that sets in every afternoon, regardless of how much fun I'm having selling my wares.   

So I’ve had to employ help. At a couple of the shows, I asked my sister to man the booth while I left to take a nap. Yes, I hated leaving. And yes, I felt like I was missing out. But it worked out pretty darn well. I was rested, Katie made some sales, and I think we both felt as if we were fulfilling out sisterly duty. I was following big sister’s orders (to rest), and she was coming to little sister's rescue. All around, a good fit. 

I have several more all-day events booked this year, and I'm already brainstorming on the best way to handle the afternoon. Do I leave and come back? Do I schedule shifts among those near and dear to me - that is, my sister, husband, and others? Is it cool to just pack up and leave? 

The good news is that I'm planning ahead, and that I have no intention of just pushing through the event into the wee hours of the afternoon. Been there, done that - and it's not productive. I'd be the lamest sales person ever...or at least the most tired!

Stay tuned for more on this. I'm sure I'll be sharing my solutions in posts to come!

Lupus doctor appointments - three months and counting. Jinx no more!

About a year ago, I announced the fact that for the first time in my lupus tenure, I was able to go a full 3 months between appointments. It was a personal best, and I was thrilled to have reached the new benchmark. (That big break only lasted once, but it was still exciting.) The 3-month prospect had happened a few years before that, but a few days after I posted the blog about going 3 months between appointments, my doctor called, and revoked the 3 month hiatus. Bum deal! Turned out at that time, my protein levels, etc. were up, and so he ordered a 24-hour urine test, and asked me to come back after my test results came in. The three month gap was not meant to be – and I contently settled back into my 2 months-between-appointments routine.

Until now.

Just last week, my doctor suggested that once again, we give the 3-month gap a try. And I’m up for it!   I know to call if something comes up, but for now, I think seeing him in three months time will be a real treat. Of course, when I was making my appointment with the receptionist at the end of the appointment, I said, “Okay, three months – that must be like June or July, right?” Not quite. It only gets me to May. But that’s still an extra month off.

And if my doctor calls in three days to say that my blood work, UA sample, or the like are abnormal and need retesting, well, so be it. I’ll enjoy the gap while I can, and not worry about the power of the jinx.

At least I’ll try not to!

Lupus: Down and out and caring for the kids – an objective perspective.

Johnny’s bout of the flu bug is finally coming to an end. He’s still not 100%, but as he declared, the true benchmark of his wellness is that he can do voices while reading books to the girls. And his funny little voices are back…so life is slowly returning to normal.

But having watched him struggle so, I realized once again how hard it would be to take care of the girls if I were sick. I’ve never underestimated how difficult it must be for those moms and dads out there whose diseases are flaring…I know how lucky I’ve been to have kept those flares at bay since the girls have been around. But knowing how hard Johnny was trying to manage the "fun, upbeat Dad" routine, despite his illness, I realize that it would be my own expectations as a supermom that I would have to have deal with. 

I was away for a couple of days while he was sick, and I encouraged him to find ways to conserve his energy…so that he would somehow find a way of get up the next morning and do it all over again. He figured out a few things for himself, of course, but I think he appreciated the suggestions. Things like letting the girls play by themselves as long as they were within ear shot (and safe, of course), watching as many movies as they could, or recruiting the neighbor girls to come and help seemed like the most obvious, practical options for a sick parent to employ. And yet – if I were in his shoes, I know how hard it would be to make those things happen without feeling guilty – without feeling like I was shirking my responsibility – without feeling as if I was letting my girls down.

But should the time come to pass, I’ll just think of Johnny. I’ll remember how simple it was to dole out that advice, and how sensible it seemed for him to do whatever he could to rest and take it easy. He did pretty well – and most importantly he made it through – but from an objective perspective, I know he could have done more (or is that less?) to give himself a break.  

Most importantly, however, I know I could have done more. I’d toyed with the idea of scheduling Paola, our au pair, to work on the weekend while I was away, but when I asked him if he wanted her to work, he said no. He was sure he’d feel better by the time the weekend came. But as a caretaker, and as someone who’s been there, I should have known. I should have ignored his positivity and hopefulness (that I so often have exuded), and lined up the babysitter so that the option was already in place. It wouldn’t have been on him to decide that he was really too sick - the decision would have already been made for him. So that when he woke up feeling absolutely awful, he wasn’t forced into putting on a happy face when he was feeling anything but. (And how many times have we lupites done that?)

So caretakers, take note: while you must tread carefully when it comes to inserting yourself into the life of your loved ones (which is another post...), I do believe that trying to anticipate their needs and having contingency plans in place are essential. You can't force your plans, of course, but having assistance ready and pre-arranged is going to be awfully hard for your sickly loved one to refuse.

At least it would be for me! 

Another false alarm - this time, my gut doesn't lie!

A few weeks ago, I blogged about a series of false alarms I had experienced - one with some fatigue, another with my website - both of which resolved themselves fairly quickly. I had another one to add to the list, but I didn't want to mention it until the resolution was confirmed. So here's the latest (and hopefully last) false alarm for the season!

First - let me ask you - where's the easiest place for you to take your pulse? Your wrist? Perhaps your neck? Those work for me, too - but the absolute easiest, i.e. strongest pulse point for me is in my stomach. That's right - I can actually press two fingers lightly into my stomach right above my belly button, and presto! I feel the strongest heartbeat you can imagine. It's my aorta, of course, and I've been able to feel my pulse there for years. Even as a kid I could do it. Of course, my body structure has evolved over time - having made room for two bambinos, subsequent weight gain and weight loss - but that easily-accessible heartbeat hasn't budged. In fact, that pulse point's only gotten stronger since giving birth to Bernadette. And at one of my last appointments, I decided to ask about it. 

And ask, I did. My rheumatologist did a physical exam, and found the heartbeat to be quite strong - much stronger than he expected. So much so, that he thought something was amiss. He confirmed that it's irregular for the aorta to be that close to the surface of the stomach - and suspected an enlargement - indicating an aneurysm. Not exactly what you want to hear, right? 

He ordered an ultrasound, of course...but I still wasn't too worried. After all, this wasn't something new. But knowing my unpredictable body as well as I do, I decided not to write it off completely until the results of the test were in. 

But I didn't panic. Although I was 90% sure my aorta was fine, I figured if there was something wrong - better to figure it out now, rather than let that aneurysm do unnecessary damage. I admit that it helped to have the sonographer hint that she'd tested for this kind of thing in people built like me before, most often with negative (meaning good) results. But I still give myself a pat on the back for remaining cool, calm and collected. A honed skill from years of waiting for test results past, I'm sure.  But her hint was a nice tide-me-over until I got the word from my doctor directly - no aneurysm in sight - just an inordinately close-to-the-surface aorta. Good for pulses, bad for knife fights, I suppose. I'll be sure to make a note. 

So that's that. Another false alarm under my belt - and just another opportunity to learn not to panic!