Monday, January 31, 2011

Declaration #1: Giving up "X"

As this is "Public Declaration Week" on Despite Lupus - it's time to get started by revealing our X, Y and Z's. First, we'll work on our X's - giving up something that doesn't improve our chances of living well, being healthy, or keeping our disease in check. Thankfully, we're only talking about giving up one thing here - as our "X" is decidedly singular. (You can thank me later.)

Maybe it's a troublesome little habit or a not-so-healthy food that is, literally, weighing you down. Just pick one thing that you are willing to publicly declare to do without. (Note, of course, that the definition of "publicly" may vary here. For those of us who have, hypothetically speaking, a blog with hundreds of followers, it may feel a bit riskier and/or permanent than those without. Nonetheless, declaring is declaring. So to those non-bloggers out there - don't let yourself off the hook. Stick to your least for the first day!)

Without further ado...let me introduce my Declaration Numero Uno: Giving up "X" -

I, hereby swear, to give up the following semi-destructive, very unproductive habit of writing a blog post the night before it's to be published. Why, you ask? What could possibly go wrong when I'm trying to bang out a post about living well, despite lupus in the wee hours of the night? Well - a lot.

First of all - when I'm tired, wit, articulation, and brevity don't come easily, so efficiently writing a good blog post seems practically impossible. It takes me twice as long to write a post, and it's usually not very good. It takes an extra dose of editing, and usually isn't a very cohesive post. And the clock goes from 10pm to 11:30pm way too quickly - it should take me half that time to collect my thoughts and knock out a post. But at night - I just can't seem to think as clearly. It's totally unproductive and not a good, effective use of my time.

Secondly- when the clock is ticking, and I know that my bed is calling - I become a panicked perfectionist (as panicked a perfectionist as one can get when we're talking about writing a blog post, mind you.) When I get into perfectionist mode, I tend to want to add things - like pictures, or links, or anything else that takes up time to incorporate. Inevitably, the picture I want to use has to be downloaded from my camera first, then color corrected, red-eye reduced, and cropped, and then, and only then, can it be uploaded to my post. Or if it's a link - it has to be the right link....not the one with the picture that I can't stomach, or the one with conflicting information, or the one that isn't as relevant to my post as I think it should be. Oh no - I have to search, and search, and then search a little more before finding the "perfect" link. And that takes time...much more time than I've allowed myself, starting at the late, late hour that I have.

And finally, how fast do you think my little head is spinning after staring at a computer screen for an hour, even after I've shut off my computer and crawled into bed? Way too fast to fall asleep, I'll tell you that much. So does it do me any good to do something that requires a great deal of thought and creativity before bed? Absolutely not.

So for those three reasons, as well as many others - I will no longer start a blog post after 6pm, if it is to be posted the following day. I can do a little touch up to a post after that time, but I can't even look at the following day's post after 10pm. Not even a little peek. Or a look-see. Or a spell check.

There. I've done it. A public declaration of "X."

Now how about you?

Friday, January 28, 2011

The danger of blogging about lupus that people will be able to read your blog about lupus. :)

For about the past two years, I've been blogging about my life with lupus - the highs, the lows, the victories, and the defeats. I've left very little to the imagination - and for some of you, I'm sure it's been way more detail than you bargained for. But I think it's important to tell you about the nitty gritty of living well, despite lupus - the challenges of raising two lovely ladies while staying healthy and rested; the not-so-pleasant details of my symptom activity, my tests results, and my bouts with the big orange jug; the balancing act of traveling around the nation to promote my book while forcing myself to nap every afternoon.

I've even written (at length) about the many boundaries I've imposed on myself over the years- the curfew at night, the naps during the day, the conscious effort to ask for help - all in an effort to stay as healthy as possible. But in doing so, I think I've inadvertently (and publicly) handicapped myself.

Can I hop on the computer late at night to return a reader's email or a customer's question about the book? Not really. I've blogged about the fact that going to bed by 11pm keeps me healthy, so what kind of example am I setting if I don't stick to my self-declared bedtime?

Can I skype my mom or leave her a voicemail at 3pm in the afternoon? Not really. I'm supposed to be napping at that time. If she knows that I'm awake, she's going to wonder why I'm not sleeping. (Once a mom, always a mom...)

Can I get away with talking about recent bouts of joint pain, a swollen digit, or a missed dose of medication without a family member calling me out on it? No way.

But it's good that I'm as exposed as I am. It keeps me honest, and it keeps me on the right track. I've said before that Johnny threatens my "bad" behaviour (be it staying up late, or skimping on a nap, or putting my health low on the totem pole) with a blog post of his own. Truth is - his idle threat works wonders. I usually pull myself together pretty quickly once he mentions a byline.

However, I've decided that it's time to make these declarations go family style. That is - to all of my loyal readers (friends and family included) who tune in each week to see what my latest move is along the path to living well - I say, it's time to pass the pasta. I'm going to ask everyone, and I mean everyone, to participate in the little blogging exercise set for next week. After all -who doesn't need to work on a little boundary-setting now and again?

On Monday, Wednesday, and Friday - I'm going to publicly declare my "X, Y, and Z's", and I'm going to ask you to do the same:

Declaration #1: Giving up "X" will come on Monday - where I'll talk about something that I'm going to do without - be it a not-so-healthy behavior, a food that shouldn't be in my diet, or a habit that needs to be broken.

Declaration #2: Taking up "Y" will appear on Wednesday - where I'll reveal my plan of attack for starting something that would enrich/better/improve my desire to live well.

And Declaration #3: "Rejigger my thinking about "Z" will follow on Friday. Living well with a chronic illness requires a significant amount of soul-searching, so I'll elaborate on my latest plan to start "thinking well".

And I'm going to expect the same from you! Why should I be the only one to publicly declare my quest for self-improvement, (besides the fact that I have a blog and you don't)? Come on, join the club. Comment, email, or write me a note about your X, Y, and Z's. I'd love to hear from you. Remember - it will help keep me honest!

Wednesday, January 26, 2011

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.

Friday, January 21, 2011

Lupus limitations - admitting them is half the battle.

Per Wednesday's post, I've had to do a little re-evaluating. I was trying way too hard to do way too much every afternoon - and I was getting tired. I was focusing my efforts on trying to do everything I thought a mom should do, as it related to the girls' lunch time, playtime, and nap time. But something needed to give, because I wasn't getting the rest I needed. Oh, I was napping. But it wasn't necessarily when I was tired. I was working it in completely around the girls' schedule...which is important. But given the fact that I have a full-time au pair whose primary responsibility is to help me when I need it, there's no reason I should be skimping out on rest.

Of course - asking for help is hard, and delegating certain tasks to Paola, our au pair, is tricky. Not because she can't do them, but because I don't want to miss out on story time with Deirdre, or tummy time with Bernadette. But I have to remember that if I make myself sick, I'm going to be missing out on a lot more than just that.

That said - I'm a boundary gal. I need to acknowledge my limitations, and then create a few hard and fast rules (which can be slightly bent, of course) to help guide me to do the right thing when it comes to taking care of myself. I like feeling good - and I like having energy for my girls - and I especially like when my girls don't see me get too tired. So based on those three goals, here are the realities of my day that I need to start working around:

1) I have a witching hour, and it's 2:30pm. I can try and deny it, but it doesn't do much good. Every afternoon, once the little hand is on the 2 and the big hand is on the 6, my brain goes to mush, my body goes limp, and every ounce of me needs a nap. Sure, there are some days when I have a little bit more energy than others, and I don't seem to run out of gas until after 3pm. But on most days, by 2pm, I can feel my body start to lag, and my mind begin to run a little slower. By 2:30pm - I'm toast.

What does that mean? It means that at 2:30pm - I shouldn't be doing anything, and I mean anything, that requires any level of exertion, brain power, or coherent thought. Does that include negotiating with my 2-year old on taking a nap? You bet. Does that include figuring out if Bernadette is tired, hungry, or fussy? Uh-huh. Does this mean that anything that needs to be done at 2:30pm (like the two examples just mentioned above) has to be handed off to someone who isn't exhausted, like a handy-dandy, super responsible au pair? Absolutely. At 2:30pm, my head should be on a pillow and my eyes should be closed. No questions asked.

Avoiding that moment of absolute fatigue is a beautiful thing. I've tried it, and it works. I sleep better, I eat better, and I "mom" better. It's like your body gets extra brownie points for not reaching that point of exhaustion. You haven't been completely depleted, so when you recharge, you get a little more energy than you bargained for.

Of course, this takes some strategizing. I make sure I spend quality time with Deerdee in the morning and mid-day, so that when I leave to take my nap 30 minutes to an hour before she does, neither of us feel short-changed. I also try and time my nap early enough so that I can get at least an hour of rest before Bernadette wants to eat again. It's working beautifully - as long as I stick to my end of the bargain.

2) Middle-of-the-night feedings deserve middle-of-the-morning naps for mom: Who do I think I am? Invincible super-mom? (Yes - but doesn't every driven, motivated lupus patient/mother/mid-thirty year old?) Ideally, we're finished with night feedings for awhile, but I need to admit that in the event that I'm up at night, I need a chance to catch up, mid-morning. I can't wait for that 2pm nap. I get too tired, and too cranky. And who wants that? Certainly not my household.

3) Our au pair is here to help. So I have to let her help: In figuring out what I could let go in order to maximize my time with the girls and minimize my fatigue level, I thought of a few household chores that Paola could help with. Utilizing her as best I can has to be a priority - I can't get hung up in trying to prove to myself that I can run the household single-handed. That's not a good use of my time. What is, however, is teaching her to order our groceries online, or showing her where the girls' clothes go after she launders them, or asking her to keep tabs on the dishes, the kitchen, etc. What's the use in trying to keep control of these things when, in doing so, I'm losing control of my fatigue level, and potentially, my status of living well? Forget that - I enjoy my life too much to worry about feeling like a slacker when it comes to household stuff. Why not ask for and accept the help while I have it? I'd curse myself come October when Paola leaves.

There you have it - my three newest goals of the day. Oh my. Now it's out there in writing - now I'm going to have to stick to it!

Wednesday, January 19, 2011

Just because you can doesn't mean you should...

Remember how excited I was a few weeks ago when I had managed to get all three Gorman girls to nap at the same time? It was a proud moment indeed - I had timed things perfectly so that everyone was ready for a nap around 2:30 or 3pm. Bernadette, Deirdre and I had all eaten our fill, we'd had time to let our food digest (i.e. Bernadette was sufficiently burped), and we'd managed to unwind a bit with some books and a puzzle before we headed up to bed. It was great - and I was able to do it without much help from Paola or Johnny.

But orchestrating everything myself was tricky. And it was tiring. And it took a lot of effort. Effort that most days, I just don't have around 2:30 or 3pm. After all, that's MY nap time, too. And I don't have a whole lot of energy to spare before that wall of fatigue hits.

So now that I've proved to myself that I can do it - I'm wondering if I really need to do it?

At the very least, do I really need to do it all by myself? After all, who am I trying to impress? Paola? Johnny? Or am I just trying to be supermom again? Am I falling into the trap of trying to do it all, just to prove to myself that I can?

I mean - think about it: I have an au pair who is fully capable of putting either little lady to sleep. She can feed the girls, and she can play puzzles and read books like the best of them. So while I could do it all myself, why not share the fun? Why not utilize the resources I have (step #243 in our quest to live well), ask for help when I need it (step #435), and allow myself to take a nap when I really should (step #547)?

The fact that I can do it all has no bearing on how well I'm living with a chronic illness. It doesn't make me a better person. It doesn't make me stronger or more resilient against lupus. It just makes me tired. And that is not a step along the path to living well.

So over the last two weeks, I've decided to redirect my efforts. Instead of focusing on ways to manufacture the day so that I can do the entire food-play-nap routine myself, I've made a concerted effort to share the responsibilities with others. The question of the day is no longer "how much did I accomplish", but rather, "how well did I accomplish the goal of not getting too tired?"

Interestingly enough, once I started focusing on ways to avoid unnecessary stress or fatigue, I realized how much better I felt at the end of the day. The "high" that came from putting both girls to bed myself is far outweighed by the "rush" of energy I have, now that I'm fully rested. Pushing back my nap was just pushing back the time I was able to play with the girls, once our naps were over.

And Deirdre can tell you - I'm not the most patient, level-headed mom when I'm tired. I told her one too many times when I was in my "supermom/do-it-all" mode that "Mommy is too tired" to deal with her nap time antics. Wouldn't it be better if too-tired Mom handed off that responsibility to not-tired-at-all Paola, in an effort to let Mom get the rest she needed (without losing her temper at naptime), so that she could be awake, alert and ready to go once Deirdre is up? Absolutely!

In Friday's post, I'll tell you about the couple of realities I had to address, in order to make this all happen. As you know from past posts, asking for or accepting help doesn't come all that naturally to me. So I've had to set up a few constraints for myself, just to make sure I stick to the plan of sharing the responsibilities. Stay tuned to see how things are going...

Monday, January 17, 2011

Out with the old...

I meant to include these in Friday's post - but I'll post them today, simply because I think it makes the new definition of a lupus "flare" look all the more appealing.

Here are just a few old examples of what I got when I googled "lupus flare":

*When symptoms appear, it’s called a “flare.” These signs may come and go.

*Lupus patients often suffer unpredictable bouts of the disease – a flare – followed by periods of remission

* A lupus symptom that is active for a while is called a lupus flare;

Kinda vague, don't you think? The mention of the links above are in no way meant to be a knock against the sites from which they were taken. I just think it demonstrates how much more comprehensive the new definition is, quoted in Friday's post.

Onward and upward, lupites of the world. I think we're going to like being well-defined!

Friday, January 14, 2011

Lupus "flare" defined

Another breakthrough in the world of lupus!

The LFA spearheaded a four-year worldwide initiative in an effort to come up with the first ever global definition of a lupus flare - giving both patients and doctors a more effective means of measuring, discussing, and treating one's disease activity.

Here's the consensus definition:

A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.

In my mind, the fact that the words "consideration of a change or increase in treatment" appear in the definition is a huge victory. Ideally, this will assist both patients and doctors in being able to pro-actively treat lupus symptoms in an effort to ease the unnecessary and unfavorable pain we so often endure. Three cheers for less pain and suffering!

Click here to read the LFA's official press release on the good news.

Wednesday, January 12, 2011


Little Darwin. He's such a good puppy dog. I've written before that Johnny and I are convinced that the words, "And he never complained" will be carved across the front of his gravestone when he leaves us for doggy heaven. He's just so tolerant. Most recently, he's been particularly tolerant of his 2-year old sister's antics. She pushes and pulls, teases and tortures - not anything life threatening to that pug-nosed little guy, but just typical behavior for a 2-year old to display toward her beloved pup. Oh, she loves Darwin...and cries out, "Good bye, Darwin"every single time we pull out of the driveway. But, alas, she's two. And so she likes to get his goat.

Apparently, she enjoys getting her mother's goat, too, or at least pushing my buttons, even the ones I didn't know I had. In the last few weeks, I've had to take a step back, calm myself, count to 20 (as we've told Deirdre to do when she, herself, gets a little frustrated), and remind myself that Miss Deirdre is, in fact, two. And no matter how grown-up, smart, or sophisticated she might seem, she's still allowed to act like a two-year-old from time to time. (It helps that she's the most adorable 2-year old on the block - so it's not all bad!)

During the times when I've had to take a step back to avoid blowing my top - here's a little acronym I came up with. I even went through a recent spell where Bernadette was taking FOREVER to fall asleep - and this little chant came in VERY handy. Killing two birds with one convenient.

So should you swing by the house during one of my more trying moments - here's what you might catch me reciting:

P - Pacify yourself

A - Anger management

T - Take a break

I - Illuminate your mind (i.e. saying to yourself, "This crisis isn't taking even 5 minutes of this entire day. How big of a deal can it really be.")

E - Emotions in check

N - Nice and slow (to avoid saying or doing anything I would regret...)

C - Chant kind words (or said acronym...)

E - Educate yourself (why am I so mad? why am I so impatient? Could the situation have been prevented?)

Feel free to try it out yourself - and let me know if it works for you!

Monday, January 10, 2011

Flare fire drill - lupus crisis averted

Because my mom frequently reads my blog (as does my dad, when she tells him to read it), I'm not going to wait any longer to clear up the 12-hour arthritis "crisis" I mentioned in last Wednesday's post. If I don't explain things now, my parents will be on the horn, calling me every day for a week, checking in to see how I'm feeling. And should I miss their call, and wait more than 33 seconds to phone them back, they'll think it's because I'm too sick to pick up the phone and talk. (I give them a pass on this one, because in the early days of lupus, that was EXACTLY why I wouldn't return their calls or pick up the phone. So they have every right to be on guard.)

But here I am, trying to alleviate their fears before the phone line starts ringing. Consider my daughterly duty done for this month.

Here's what transpired in the past two weeks:

The day after Christmas, I came down with a cold. It was a real whopper - requiring plenty of tissues, cough drops, and the like. It lasted for a good three or four days - but finally by Wednesday evening, I was feeling pretty good. My Rudolph nose had subsided to a nice shade of pink, and I was able to return the kleenex box to its rightful spot in the bathroom, rather than keeping it by my side at all times. Then, on Thursday morning, I felt a little bit of joint pain setting in, but it wasn't alarming and I figured it was just the residual effects of the cold. I took my normal pills, including my standard 5mg of prednisone every other day. But by that evening, it was like I'd been in a lupus flare for weeks - every joint in my body was achy and arthritic, and the strength in my arms and hands was non-existent. I went to pick up Deirdre to help her into her chair at dinner, and I couldn't do it. It was awful! Immediately, I was taken back to those days of immobility and constant, agonizing pain...and I was concerned.

Per doctor's orders, I took another 5mg of prednisone that evening, and planned on taking 10mg the following morning, hoping that at least I would be able to function semi-normally. I secretly had hopes that the increased dosage of prednisone would nip the disease activity in the bud completely, but I was trying to concentrate on one day at a time. (Look at how I've progressed in my thinking from the early days!)

The following morning, again, I woke up with the joint pain, took my 10 mg, and waited for those magic little pills to do their thing. Eventually they did, but I could tell that the joint pain was still there. It's that feeling where your joints don't hurt, but there's a lurking stiffness that tells you, "Beware, lupus is the background, ready to strike as soon as this medication wears off!" So I knew I wasn't in the clear, but at least I was feeling better. By the evening, that stiffness was gone, and I felt like myself again. The next morning, I awoke without a joint pain in sight...and I've stayed that way for a week. I'm back to my old medication regimen (5mg every other day, plus plaquenil), and I haven't felt as much as a twinge. No extra fatigue, no swelling, no nothing!

But for a little over a day, I felt everything rushing back - just like the old days. The pain, the shock of not having use of my hands, the frustration of waiting until the medication kicks in. All of it came back...although there were a few missing parties.

Who wasn't present and accounted for? Anxiety, fear, or anger. I wasn't worried that the pain would go on forever. I wasn't thinking about the vacation I was going to have to postpone three weeks down the road. Nor was I mad or resentful that lupus had edged her way into my plans. I recognized that my body had been taxed a bit too much (too many late nights tidying up the post-holiday mess in the house coupled with my sneezing and wheezing), and it was crying out for help. The best thing to do was to respond accordingly. Here was my strategy:

1) I did not hesitate to make a change to my meds. I didn't wait for my pain to get any worse. As my doctor instructed me, I took action immediately. I didn't ignore the symptoms - crossing my fingers that the pain would go away, nor did I act like it wasn't that bad.

2) I did not overreact or freak myself out about the possibility of having to cancel plans in the coming days or weeks or months. While I do recommend preparing yourself for that fact when a flare does come on, in this situation, after just a few hours of pain, it would have been detrimental for me to fret about the longish-term consequences of a flare that hadn't yet arrived. I needed to focus on the present, and the present only - which leads me to #3.

3) I did assess why my body might be taxed, and what might be causing the added stress, rather than just brushing over or ignoring the facts. In the old days - I would have ignored the late nights, and told myself that a measly old cold shouldn't bring me down. But now I know better!

4) I did put myself to bed more than an hour earlier than normal, learning from the self-assessment I mentioned in #3. I applaud myself for this, as should you when you make such a move, because despite the fact that the second dose of medication had temporarily alleviated the pain, I avoided the trap of capitalizing on the prednisone high by doing end-of-the-day tasks, and instead, just hopped into bed at the earliest opportunity.

5) I did make a mental list of things that could be postponed on the next day's to-do list. I had a full day planned, and the more I could eliminate, the better chance I had of allowing myself to rest up, in order to let the meds work and my body recoup. The first to go - thank you notes (primarily because there was no way I was going to be able to write a single word), and the next - the load of laundry I had in the dryer. I also planned on postponing the pot replanting I'd been trying to get to all week. It all just had to wait - and to think that just the day before, those things had seemed so pressing. But perspective is everything - thank goodness, after 10 years of lupus, I finally found some!

Wednesday, January 5, 2011

Old benchmarks revisited

I've recently seen the resurgence of two past benchmarks - one good and one not so good. Which would you like to hear first - good news or bad news? Before you answer, I should actually say that the bad news isn't really all that bad - and it does have a bit of a good news twist - so maybe I'll just start with that one, and save the best for last.
Bad news: I have another round of hair loss under my belt. My hair is thin enough now that I can twist it up and pin it back with a single, solitary that, pre-Bernadette delivery, wouldn't have been big enough to hold even half of the hair on my head. I've been here before - as hair loss is nothing foreign to me - but I was really hoping that it wouldn't be significant this time. Of course, it's not as bad as it could be - I've written before about being able to pin my terribly thinning hair back using little teeny baby clips - so while the clip in question is small, it's not that small. And I'm pretty sure it's just post-partum hair loss - not lupus-induced loss - which is a very good thing. It's not noticeable to anyone but me or Johnny, or maybe the kind cleaning people who scour my bathroom every few weeks...but it has made a bit of a dent in the old hairdo.
The good news twist: I'm pretty sure the loss is starting to subside. (At least the drain in my shower leads me to believe this is true.) Cross your fingers that I haven't just jinxed myself. I'll be sure to keep you posted!
And speaking of jinxing myself - onto my good news: I'm not due back to see my rheumatologist for three, count 'em, three months! That's never happened to me before - in the 10 years I've had lupus, I've never been able to go more than two months between appointments. Not because I was feeling bad...but just because my doctor wanted to keep tabs on me. But at my last appointment at the beginning of December - he said he wanted to see me back in 3 months. Woohoo!!! I waited to post about it for a good month, because if you recall, the only other time he's ever suggested we do three months between visits, here's what transpired the week of the appointment:
The day of the appointment - Dr. S declares a three month gap between that appointment and the next one.
The day after the appointment - I post a blog about said gap, gushing about how excited I am to have reached a new benchmark.
The day after I publish my gushing post - Dr. S calls to say that the test results of my urine sample came back - protein positive - and that I need to do a 24-hour urine test AND move my appointment up a month and a half. Ugh! Did I jinx myself or what?
The day after Dr. S calls - I write a follow-up blog, taking back my gush.
So this time - I vowed not to breathe a word, or get myself too excited over the prospect of the 3-month gap. In fact, Dr. S gave me a 24-hour jug and a prescription at my December appointment, just in case the test results came back protein-positive. But a month later - I'm happy to say that I'm still on the 3-month trajectory and protein-free. Yippee!!
Of course - in an upcoming post, I'll tell you about the little 12-hour arthritis flare I had - something I'm calling the lupus flare fire drill - which almost had me thinking that 3 months wouldn't happen. But so far so good. Stay tuned for details!

Monday, January 3, 2011

Happy New Year!

I'm back from my holiday hiatus - ready for another year of living well, despite lupus!
We've been busy in the Gorman household over the last few weeks - and I'll be sure to update you in the next few posts. For now - here's a peek at our 2010 Christmas card that we sent just weeks ago.
(Front - Bernadette's glamour shot, Inside - Collage of photos and text, Back - Story time photo of the girls.)
Click on the images to see everyone up close and personal. Cute, huh?
I should be able to get back into the blogging groove this week, but if not this week, next Monday for sure. Our au pair is on vacation for almost two weeks, so time to blog is a little hard to come by. Hopefully, the ladies will cooperate and give their mom a little typing time!
In the meantime - Happy New Year!