Friday, July 30, 2010

Lupus symptoms add up quickly, don't they?

Last week, I had the pleasure of talking with a young woman recently diagnosed with Rheumatoid Arthritis. When we spoke, she'd been diagnosed just 1 week, had read my book, and was heading to the doctor within the next few days. She had questions, but she sure sounded like she had her stuff together to me! She had her lists of questions, a health resume, as she called it, and she'd done a bit of research on the current RA medications. She was armed and ready - but I was happy to talk with her to share my experience and compare notes.

At the beginning of our conversation, she mentioned one or two symptoms she was having, but felt that her RA diagnosis had come more from the blood work then any physical symptoms she was experiencing. The more we talked, however, her one or two minor symptoms seemed to increase in number - as she began to really take stock of all she's been dealing with, her physical symptoms really started to add up. As she spoke, I realized just how much she reminded me of myself.

It's all too easy to become accustomed to the "routine" - the myriad symptoms that one just has to deal with - that it's hard to gain perspective on how disruptive a chronic disease can be. We convince ourselves to cope with the little bit of fatigue once or twice a day, or a little joint pain here, or a little stiffness there - when we should be taking a comprehensive look at what's really going on with our bodies, and determine if something needs to be addressed.

Take my recent joint pain and swelling: I mentioned my finger and knee swelling in an earlier post - but did I also mention that an area on the side of my foot had been mysteriously swollen a few days before? Or that my elbows had been a little tender to the touch lately? Did I also throw in the fact that I'd had a sore throat for a few days? I mean seriously! I'd say those add up to a whole heap of lupus, wouldn't you?

I can assure you - I wasn't denying I had the symptoms - I was just considering the symptoms individually, and attributing each to a different cause: my foot was because of some new shoes, my elbows were from leaning against the pool wall, so on and so forth. But when you're dealing with something systemic, it's important to be as in tune with your body as possible, thus allowing you to make adjustments as early and often as cutting yourself off from the toolbox, slowing down on your errands, or fitting in a little more rest time.

Of course - this is where my chronic control spreadsheet (which I currently don't keep because my symptoms are so few and far between) works so well for me. It helps me keep tabs on my body as a whole, rather than attempting to sort out all of the symptoms in my head or create a mental image that I can't go back and reference.

What's most important, of course, is that however you tally up your symptoms, you don't underestimate the beauty of being symptom-free. My friend with RA is in a great place right now - she's anxious to start medication in order to get her disease under control. Imagine her surprise when she no longer has to fight the fatigue that she's become so used to, or the pain in her knees, or the stiffness in her neck? These symptoms, as ever-present as they may be, have just become part of the "routine", but what a glorious day it will be when they're no longer part of the scenery.

I thank her for bringing me back in line - for allowing me to tally up my own list of symptoms in order to pull back a bit. I DID need to slow down, particularly where Deirdre's new room was concerned. I was running all over town, trying to pull the whole room together...and hitting the toolbox hard on top of it. And even if the symptoms were (knock on wood) short lived, those collective symptoms are a reminder that I DO have lupus, and that if I'm going to take good care of Deirdre, KitKat and the rest of the Gorman household, I need to ease up and take it slow.

So it's still hands off the tools. In fact, as anxious as I've been to put up the borrowed crib that Deirdre's going to be using in her new big girl room, I think I'll give it another few days. Because with the crib, comes the washing of the new bedding, and then putting it all on, and then finding drapes to match. That can wait another few days, don't you think?

Wednesday, July 28, 2010

Why fast and furious doesn't mesh with lupus

Having just posted about my recent toolbox trials and tribulations, I've given some thought as to why I've had to temporarily divorce myself from the screwdriver. In my opinion, it's not as though I can't actually handle the mechanics of a simple nuts and bolts job. Thankfully, today, I don't suffer from constant (or even mildly consistent) joint pain, my lupus is NOT active, and I haven't had a flare in years. I can do just about anything with my hands - which most certainly wasn't always the case in years past - so I consider myself to be in great shape, lupus-wise. So why have I had to swear off even the simplest of screw driving tasks - like replacing a switch plate, adding a closet knob, or mounting a little mirror in Deirdre's new room? Why do I have to wait for Johnny to hammer in 4 tiny nails to secure a new shade on our back door? Why can't I tackle the mini-window treatment in another room? Because I fit in the "fast and furious" category, rather than in the "slow and methodical" one.

As evidenced from my toolbox charades from last week, I can't help but tackle ALL of my projects at once, rather than ease into them by doing one on one day, and then another a day or two later. It just doesn't come naturally to me to wait or be patient - which is probably why the words "slow down" or "slowly" are mentioned almost 30 times in my book. I have had to teach myself to let life march slowly patiently allow my body to catch up with my let speed, perfection, and my desire for completeness fall by the wayside.

My fast and furious nature isn't anything new; I've always been like this. From my early days as a budding artiste to my recent exploits with the toolbox, I've always done things as quickly and with as much fury as possible. As a child, my mom claims that I would draw a picture as fast as possible, churning out as many as possible, rather than taking time to perfect my, ahem, works of art. I threw a softball with as much vim and vigor as I could muster, did homework as fast as possible, and continue to put efficiency at the top of my list.

I have discovered that with lupus, however, life can still be fun, productive, and enjoyable, even at a slightly slower, less hurried pace, particularly when it doesn't put your health in jeopardy.

I've learned (and am learning) to practice this slower approach in all aspects of life - at home, in my book business, and in social settings. Just the other day - I chose to throw the laundry in one day, fold it the next, and put it away a few days later. Those of you who are muttering "Tsk, tsk", have no idea how nice it was not to overextend myself over a silly load of laundry. And during this pregnancy, when walking or running vigorously (or for real exercise) isn't going to happen, I've found that taking daily albeit leisurely walks with Dar and Deirdre are just as satisfying. The fresh air, the little bit of movement - every little bit helps. And even going to the pool in the evenings with Deirdre - sure, I have to plan ahead to make sure I don't do too much in the morning so that I'm not cashed out that evening...but making plans and having an activity to look forward to is a nice thing. I enjoy making room (and making sacrifices) in order to share that time with my daughter.

So here's to the 30 or so times the concept of "slowing down" appears in Despite Lupus. Let us now practice what we preach (or write, eh?)

Monday, July 26, 2010

Don't touch that toolbox a.k.a. taking a lupus hiatus

I've briefly mentioned before that with KitKat's arrival, Deirdre will be moving into a "big girl" room down the hall from her current nursery. We're coining it as a "big girl" move, even though she'll still be in a crib. Thankfully, she's excited, and loves taking part in all of the preparations to get her room ready - new bedding, new furniture, and new "big girl" stuff. Unfortunately, with new stuff comes screws, and nuts and bolts, and I've had about enough of them!

A few weeks back, I disassembled the daybed in what will become this new big girl room to move it out and into the next room, along with everything else that we'd been keeping in there. Nothing was particularly heavy (Johnny helped with the actually "move" of the bed) - but stuff is stuff...and it was a lot to move.

And then just last week, while Johnny was away for a few days, Deirdre and I tackled some of her new furniture. Again - nothing big deal - I just put together a new mini table and chairs set, a stool, took off some old knobs from closets and dressers to make room for new ones, and assembled an adult-size chair perfect for reading books together. (Okay, that last one WAS a biggie...but it wasn't heavy...just big.)

Unfortunately, my arthritic-prone hands aren't meant to use screwdrivers and drills - and I paid for my handiwork over the following few days. My pointer finger on my right hand swelled up - first, the tissue between the end and the joint, right where the screwdriver had to rest while I used it, and then eventually my joint and most of the finger. On top of that, my knee was swollen (not actually the joint, but all of the tissue right above it, where I'd been resting on my knee as I put all of this stuff together.) It's no wonder why it happened (although in later posts this week, I'll tell you how I convinced myself that it couldn't possibly be because of my construction shenanigans), but bottom line is that I've cut myself off from the toolbox. For awhile. I have so much more to do in her new room - but I've got to be smart about this swelling. It went down within a day or two...but come on. How important is it that I get this room finished right now, this very minute? The answer: Not very. (Although it took a lot for me to just write those words!)

Now the task at hand? To practice patience, patience, and a little more patience, while I wait until Johnny can help me finish up with the tools. He'll do it, but I just can't expect him to stop working or doing what he's doing in order to do what I wish I could do, but just can't. Oh - the patience that's involved in living with lupus. Wish me luck!

Friday, July 23, 2010

What I did on my summer vacation (at the beach, despite lupus)

As mentioned last week, we had the pleasure of spending a week at the beach recently, thanks to the fact that my in-laws have a shore house in Ocean City, NJ. The week was fabulous - and for me to declare that "a week at the beach" is good, it really has to be good! After all - I'm not supposed to be in the sun, the heat and I don't mix, and I'm almost 27 weeks pregnant...all in all, not an ideal bikini season. But we had a blast, and Deirdre soaked up ever moment she had with her cousins.

We had to make a few concessions on spending every single moment with them, because a) she and I both nap, b) the sun was shining brightly almost every day we were there, and c) the beach is a little extra work (for both of us!) We're always pooped after even a couple of hours in the sand and I had to limit our time for everyone's sake. Here's how we managed:

We woke up, hung out with the family in the morning, then headed down to the baby pool in the back yard for an hour or two before lunch. Deirdre was in the sun (lathered up appropriately, of course), while I stayed cool sitting in the shade next to the house. I was spared the sun for those couple of hours and she loved running back and forth between the pool and the shade.

Most days, the cousins joined us poolside. But on those days when they headed to the beach, we just chose to hang back and plan our beach time later in the day. We'd head up to the house for lunch and naps...long ones, at that, given that fresh ocean air...and then around 4 or 5pm, we'd head to the beach. Sometimes it was later, sometimes a bit earlier, but boy, was it gorgeous in the early evening hours! The sun was much lower and cooler then, and Deirdre ran back and forth on the beach with her cousins for the last hour or so they were down.

Some days they went up shortly after we came down (after all- they'd been there the whole afternoon) - but Deirdre didn't mind too much. She'd settle back into the sand, digging, splashing, running away from the waves, and loving every minute of it. We usually wouldn't come back up until almost 7 or 7:30pm - a lupus patient's dream visit to the beach. Off-hours!

I think Johnny liked our schedule too. He fit in several rounds of golf while we were on vacation - so just as he was finishing up on the course, we'd be heading down to the beach. Sunset at the beach with family - how divine!

That said - when we DID venture down during the hot, sticky, sunny mid-day hours, my in-laws had erected a tent right there on the beach, shielding no less than 10 people at a time from the rays. It was great - and kept me symptom-free the whole time. Now that IS a good week at the beach!

Wednesday, July 21, 2010

Fleeting feistiness...

Deirdre has officially entered the independent stage - (god help me if this isn't it!) She wants to pick out her own outfit (asking and then directing me to sit down across the room while she roots through her drawers for an appropriate get-up), dress herself (even though she asks for help...), and asks to sit in a big girl chair (i.e. anything that ISN'T a high chair), among many other instances. I know, I know - she's turning two in a few months...and this is normal...but hopefully, it's temporary, too.

This morning, we went over to play at our neighbor's house, and Deirdre insisted (which means there was much crying and flailing involved) on wearing a dressy dress with frilly socks and tennis shoes. She looked cute as a button, but perhaps not the ideal outfit for sliding, swinging and running around in the sandy playground. (Oh well - that's what washers are for. And I can say that, now that ours is fixed.)

And as much as I enjoy watching her exert her independence, learn (and use) new words with authority, I'm happy to hear that this stage is a bit temporary, or so says my neighbor. I know she'll continue to change and grow and learn, but I would imagine her feistiness will subside. Probably not sooner than later, especially with a baby sister or brother on the way - but none the less, temporary. Just as everything seems to be with kids - the good stuff and the not-so-good stuff - it's all fleeting.

And this reminds me of one of the more frustrating aspects of lupus - the not-so-fleeting part. The part where the disease sticks around forever. The part about not knowing when the symptoms are going to subside during a flare, and the fact that some of them might not ever go away.

That said, I'm a fairly positive person, and I firmly believe that you can live a pretty decent life with a chronic illness. I know for a fact that life with the disease can improve, and that you have the power to make it better. It's not always easy - and it doesn't come without concession - but it can be done. I think accepting that you have the disease, and then saying, "alright - now what am I going to do to live well, despite it" is key. And while I wish being symptom-free and having disease inactivity could be an absolute, permanent fixture in life with's not.

Shall I kick and scream and be feisty like a two-year old? Nah. There has to be a better way, don't you think?

Monday, July 19, 2010

CafeMom's new support group - chronic illness up for discussion!

I was recently contacted by a rep from CafeMom, the social networking site for mothers, letting me know that they've just launched a support center for moms with chronic illnesses. Sounds like it could be a great resource. They're even featuring an Ask the Expert series, where members have the opportunity to ask questions of experts on various chronic illnesses.

This week, starting Monday, July 19th, psychologist Dr. Elvira Aletta of Explore What’s Next will be taking questions about the emotional side of managing chronic illness. Click here for a direct link to the Ask the Expert program for the week.

If, like me, this is your first introduction to the site, CafeMom is a leading website for mothers, reaching 6 million unique moms each month. Moms post more than 300,000 pieces of conversation in our groups each day. Take a minute to check out their site - looks like they cover just about everything!

Friday, July 16, 2010

Breech baby good bye!

The tide has turned…and so has Kit Kat! I’m happy to announce that our adorable baby Kit Kat was head down at our most recent appointment this week…AND feeling rather photogenic. Here's a new photos of the little munchkin. Can you believe how incredible the 3-D imaging is? We think our favorite sonographer, Jie (pronounced Jay) does a great job of capturing KitKat in baby’s best light.

This second sonogram picture is of Deirdre, taken at about the same time during my 1st pregnancy. See any family resemblance?

In other baby updates, the PR interval looks great (so no sign of congenital heart block caused by the lupus antibodies I carry (SS-A and SS-B), big K is weighing in at 1 lb, 15 oz, and we managed yet another sonogram without finding out the sex of the baby (much to the dismay of my sister and mom.) KitKat is also measuring in the 50th! I've never had a 50th percentile baby before. Deirdre maxed out at about 25%, I think, and hovered around the 15% mark for the first six months of her life. KitKat's leaning toward being a big one...but not if I have anything to say about it!

So all is well in babyland…now to finish Deirdre’s big girl room so that big sis can move out of the nursery and make way for Kit Kat. I hope she likes pink!

Wednesday, July 14, 2010

Back to blogging

My apologies for the blogging hiatus – we’ve been vacationing at the beach without internet access (all in all, not a bad thing!) for over the past week. We had a great time, and Darwin and Deirdre thoroughly enjoyed themselves. Here are a few pictures from our trip:

...Darwin participating in the 4th of July festivities

Deirdre finding time in her busy schedule to relax…

Practicing her beach-side handstand like her big cousins...

And riding the rapids in Ocean City, NJ.

We also finished up the week in New York City, where Deirdre learned how to hail a cab from her Uncle Tubby.

Look for more updates on KitKat and my 2nd oh-so-successful (at least thus far!) lupus pregnancy in the coming days. Looking forward to getting back to the blog!

Friday, July 2, 2010

Making that lupus connection

This past spring, I made several stops on the Despite Lupus speaking circuit, getting the chance to connect with hundreds of lupites (and their loved ones) along the way. It was a wonderful sequence of events, and I thoroughly enjoyed myself every step (or should I stay "stop") along the way.

At the time of my travel, I was about 15 weeks pregnant...not quite showing, but far enough along to make mention of the fact whenever appropriate. And boy, did I have a receptive audience! So many women (and men, too), shared with me their own personal lupus pregnancy success stories (or those of their wives!), encouraging me to continue to take good care of myself, do as the doctor says, and not overdo. Of course, I heard the occasional not-so-successful story, and those were important to hear, too. They're a good reminder of just how serious, taxing, and, yes, even devastating the disease and its complications can be. But it was a wonderful showering of kindness and consideration all around.

What was particularly touching and what I wasn't prepared for, was how different it felt to be hearing these sincere, heartfelt, empathetic stories and well wishes from people who, just like me, had embarked upon motherhood, despite lupus. Most of them were perfect strangers, and yet, their words hit home more than most, because they knew just what it was like to plan for and go through a lupus pregnancy - all of the tests, medications, considerations, and possible complications. The level of understanding my fellow lupites and I shared was truly remarkable - and to know that these people understand, like really understand what a lupus pregnancy is all about was an incredibly comforting feeling. When my fellow lupites wished me good luck with the pregnancy, I could tell that they really knew what those words meant.

Don't get me wrong - every pregnancy needs a bit of luck, and most people, generally speaking, are quite considerate when it comes to the average pregnant lady. But to be able to look into the eyes of someone who knows just how hard it might have been for you to even consider pregnancy, who understands the ramifications of being pregnant with a chronic illness, and who identifies with the challenges that lie ahead for you and your baby after pregnancy, was something else. It was some kind of wonderful.

So for those of you who wished me well on my pregnancy and shared your own personal experiences - thank you. Your words meant so much!