The lupus stuff I've learned NOT to dread

Two Fridays ago, I was dreading nightfall. That was the night I’d decided to start letting Bernadette cry out her middle-of-the-night awakenings. She’d been sleeping through the night for over a month, when, all of a sudden, she started waking up again. The doctor had warned us that this might happen between 3 and 4 months of age, but that we had her blessing to let Bernadette cry it out at this point.

(Note that because Bernadette was gaining weight, eating well, napping well, displaying a good temperament, and was in overall perfect health, in addition to not showing any signs of teething, sickness, or other signs of distress that might cause her to wake up at night – the doctor gave us the go ahead. Please consult a pediatrician before embarking upon this or any sleep training method.)

Based upon past experience, I figured it would take about three restless nights to break sweet Bernadette of the habit. Most pediatricians say that the first night, one can expect about 2 hours of crying. The second night, about half that, and by the third, one can expect little to no crying. By the fourth night, everyone in the house should be sleeping soundly. (Deirdre took a little less time than that…and by the third night, we didn’t hear a thing. And that was that.)

But I was prepared for the worst. The evening arrived, and I put Bernadette to sleep at her normal bedtime, knowing that the next time I saw her, it might not be a pretty scene.

Right on cue, she woke up crying around 2:30am. For the past week, I’d been getting her up and feeding her, but not this time. I went in, patted her on her sweet little head, reassured her that I loved her, and walked out. Of course, she continued to cry, and I prepared myself to be tough. I planned on going in again after 5 minutes, and then again after 10 minutes…but I didn’t get a chance. After about 4 minutes, her cries slowed to a whimper, and after about 7 minutes, I couldn’t hear a thing. I waited, and waited, and waited…but heard nothing. That little knuckle ball had put herself back to sleep. So much for night #1!

The next night – I prepared myself that maybe night #1 was just a fluke, and that this would be the night that she really let me have it. But night #2 proved to be just about as easy…she woke up around 3am, cried for about 12 minutes, whimpered for another 5, and then I didn’t hear another peep. Could it really be this easy?

Night #3 came and went, as did nights #4 and beyond, and I haven’t heard from Miss B in the middle of the night since. Whew! Was all that worry for nothing or what?

(I know, I know – I may not be out of the woods yet, but so far, so good!)

So after all that dread, worry and concern…I got myself all worked up for nothing. Sound familiar?

I can think of several things with lupus that I used to dread terribly…things I would anticipate happening, become anxious about, but in the end, realize they weren’t all that bad.

Here’s the short list of things I’ve learned not to dread:

1) Going to a new doctor's appointment: Whether we like it or not, almost every doctor’s appointment is a step forward, even if it involves a long, drawn-out, or seemingly repetitive process. Maybe it's exhausting to rehash your history, or maybe we don’t hear what we want to hear from this new doctor, or maybe those new symptoms you’ve been experiencing don’t have an explanation beyond lupus…but at least, now you know. I remember dreading the words, “It’s just lupus”, wanting more than anything to have some other explanation for the mysterious symptoms that had just cropped up. But I came to realize that even if it is “just lupus”, at least I’m no longer in the dark. At least now, based upon this new or confirming information, treatment can begin…building from one doctor’s appointment to the next.

2) Waiting for test results: I can’t tell you how many times protein has shown up in my urinalysis, or how many calls I’ve received due to an irregular pap smear (an example of lupus wreaking havoc on EVERY part of the body.) But as much as I dreaded waiting for the results and getting those calls…once again, I found that it’s only after the results are back, that treatment can begin. If the results aren’t so great – so be it. If I’m sick, I’m sick. It’s usually a test result that prompts the doctor to make a move. I say if that’s the only way to see what else is in our doctor’s bag of tricks, bring on the results!

3) Asking for help at the grocery store: Oh man. The first time I did this, I thought I'd die of embarrassment. In fact, I didn’t think I was going to be able to go through with it. And then I asked. And the bagger bagged. And then he helped me out to the car. And then he loaded my grocery bags into my car. And then he left. And that was that. And I felt great. And he didn’t seem to mind. And so I realized it wasn’t that hard to ask for help. I asked the next time, and the next, and it became even easier.

4) Using a wheelchair at the airport: This was a biggie, too. It’s so hard to ask for wheelchair assistance, especially when you look as healthy as lupites often do. I remember asking the first time – and thinking that I might even get denied assistance. But then I found myself being whisked through the terminal…and thinking how much energy I was saving, and how good it felt to be off my sore and aching joints, and realizing that this was the smartest move I’d made all day. So I realized I should make more smart moves in the days to come.

And here I am, smart moves and all. I can assure you - living well is definitely a smart way to go. No doubt about it.


Shaista said…
Asking for help, I find to be the easy part. It's the advice that comes afterwards that is tough to swallow ;)

And the wheelchairs! Alack! I hated having one when I travelled. Soooo embarrassing. But Heathrow does go on forever...

So here's to you, having more 2:30pm naps, and asking for help in such a clever way, that no-one even realises why you did, other than that you are a lady :)
Sara Gorman said…
Well said! Thanks for your comments - and please note the time stamp on my responding comment...WELL before my 2:30pm nap. :)

Take care!
Emily Christine said…
I love what you wrote about # 1 & 2! Made me feel better just to read it!
Aymie said…
Thanks once again for a great post! :)

I've been seeing a PT to get weekly acupuncture and, after well over a month of wanting to cry when taking every step, I finally asked for crutches. Apparently she'd been waiting for me to ask as she couldn't just give them to me. Now life is so much easier, especially after getting over the initial fear of wondering what everyone would think about someone looking so normal using them.

And it's time to get ready for my 3pm nap, which I just love!
Shaista said…
Hi Sara, are you based in the States or the UK? Are you currently involved in any publications for medical journals? Would you be interested in writing for one, from the perspective of a patient, in order to enable the better understanding of physicians. If you are interested please contact me at
Sara Gorman said…
Emily Christine -Glad you could relate! Doctors and their test results take some getting used to, don't you think? :)

Thanks for stopping by.
Sara Gorman said…
Aymie - Can you believe SHE was waiting for YOU?!?! That little antecdote might just make it into an upcoming speech I have. What a good example and reminder that we, as patients, have to take control of our health and wellness, including rehabilitation! (And I remember talking myself into the idea of a cane years ago - I finally convinced myself that it wasn't the stable young lady with the cane that would bring attention, but the hunched over, hobbling, pitiful young thing that couldn't walk from point A to B!)

Thanks for sharing!
Aymie said…
I know, I couldn't believe it either!

What happened with me is that I suddenly realised, after reading the bit in your book about three things standing in the way of living well, that my hardly not being able to walk was one of them and I needed to do something about it. I knew that I'd ask for help during a flare, but I somehow, really stupidly, hadn't realised that I had been flaring. Well duh...

And of course use it if you think it'll help. :)

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