Friday, January 30, 2009

"Sew" good for the fingers!

Pick up those knitting needles and take out those sewing machines - done the right way, both activities can be great physical therapy for your arthritis! According to Occupational Therapist Jill Noaker-Luck, "Any activity that gets hand joints moving is a good thing, provided it's not used as a substitute for prescribed exercise."

Looking for a fun way to work out those fingers? Check out the new line of instructional sewing videos from "The Sew Teacher" at Each video demonstrates how you can design and produce a different home decorative product in the comfort of your own home (provided you have a sewing machine). Some of their featured products include pillows, window treatments, and bedding. Their creative director (and instructor), Beth Bates, does a fabulous job of guiding you through each step of the sewing process, using simple and easy-to-follow instructions. I like to say she makes everything seem "sew" easy!

And if you're more interested in picking up a pair of needles, check out the 5 knitting tips below (some which can apply to sewing, too), featured in a recent article in the "Just Diagnosed" issue of Arthritis Today. The article, titled "Make Knitting Finger Friendly" encourages arthritis sufferers to work out the kinks keeping the following in mind:

1) Start small and pick a project like a hat or a scarf
2) Support your arms and hands with pillows for maximum comfort. The activity should make your joints more comfortable. If not, take a moment to rest.
3) Use rubber fingertips to help you grip the needles
4) Bamboo needles are lighter, warmer and not as slippery as Teflon-coated or metal needles
5) Take a break every 15 minutes or so - just to stretch your hands, neck and back

Take it from someone who used to cringe at the thought of threading a needle ("you want me to thread this skinny little thing into that little hole using these big ole' throbbing fingers?"). If I was feeling good enough and needed a little finger exercise to loosen up the joints, knitting or sewing a small project would be just the thing!

Wednesday, January 28, 2009

Setting myself up to succeed

A funny thing happened on the way to the kitchen yesterday...

I'd made myself a sandwich for lunch, eaten it, and headed back to the kitchen for a little something more. My first stop was the pretzel canister - but it was empty. My next thought was the fruit drawer in the refrigerator - but I found nothing. I then checked the pantry for some teddy grahams, graham crackers, or the like, and the only thing I found were crumbs.

So you know what I resorted to? The homemade chocolate chip cookies I'd made that morning. I had no intention of eating any (at least not as part of my lunch), but the plate I'd made up for my babysitter, Leticia was just sitting there. And since there wasn't anything else to accompany my sandwich, I had to supplement with a cookie.

Now don't get me wrong - I'm not berating myself for eating one measley cookie (or for the 2nd and 3rd I had later that day.) But what interests me is that I ended up chomping down on the sweet stuff simply because I hadn't stocked the kitchen with the good stuff. Guess it's time to order groceries again. Here I come, Peapod!

Monday, January 26, 2009

Choosing Well

Given the fact that Deirdre ate 4 times in less than 6 hours yesterday, I'd say she's going through a bit of a growth spurt. Funny how their little bodies just all of a sudden need more nourishment. And funny how Deirdre drops everything in order to make sure she gets what she needs.

Unlike me, she's not torn between doing what's right for her body and sticking to her agenda. It's not as though she thinks, "I'd like to have an extra helping of milk right now, but maybe I should do some tummy time instead." She knows what she needs and doesn't stop until she gets it.

Henry is the same way. He has his "I have to go poopy/potty" whine down pat...and he doesn't stop until he's outside, doing his business. I appreciate his insistence, though. Since he's lost his vision, we've had very few (if any) accidents in the house. Guess since he can't see exactly where he's headed, he's going to make sure we know what he needs and when he needs it.
So in honor of Deirdre and Henry, I'm going to work on listening to my body this week. The next time I know my body needs rest...but the laundry is stacked up or the dishes need to be put away...I'm going to choose to do what's best for my body first, and tackle my "to-do" list second.

And, in the meantime, maybe I can teach Darwin to fold laundry.

Friday, January 23, 2009

Let's make a list...of Good Docs!

I can't tell you how many times I've been asked for a doctor referral. Be it a friend, family member, acquaintance, or someone who's new to my Lupus group - everyone seems to need or knows someone who could use the name of a good doctor. And I love sharing the information! My doctors have been invaluable in my recovery - so nothing makes me happier than pointing someone in the direction of good health care.

Of course, all of my doctors are located in the Northern Virginia area, which is great for those of you who are local. But that doesn't do much for those of you in Boise, Idaho or Phoenix, Arizona. Sure, you could get a referral from my doctor for a trusted colleague in your area, but wouldn't it be great to have a list of good, highly recommended doctors in your area, created by Lupus patients across the country?

That's where you come in -the dedicated readers of Despite Lupus. I'm hoping you'll share the contact information of one or two doctors in your area that you couldn't do without - those select medical professionals who have helped you whip Lupus into shape. I'm looking for names from all across the country - so if you've got a good doctor, let us know about it!

Feel free to post a comment with the information, or email me at And include a quick blurb while you're at it - maybe just a sentence or two about what makes your doc so good.

Don't have any names to share, but are desperately looking for one? Put your request in a comment - and we'll see if we can put this Lupus network to work!

Check back over the weekend for my list of tried and true doctors in the column at the right.

Wednesday, January 21, 2009

The Lupus Lyric

The harder I push, the sicker I get
The sicker I get, the less I resemble myself
The less I resemble myself, the harder I push to try and regain
some semblance of who I used to be.

I came up with this about a year and a half ago as I was writing my book. How true it is!

Would anyone else like to share some poetic thoughts, words of wisdom, or phrases that they live by? Feel free - that's what the "comments" are for!

Monday, January 19, 2009

Listen Up, Doc! - Tip #3

Time to get back to my tips for going to the doctor, taken from my book, Despite Lupus, due out this Spring. Check out my first Listen Up, Doc! post, Tip #1 (Ask Questions) or Tip #2 (Take Someone Along) if you'd like a refresher. Here's Tip# 3, titled "Recap and Review":

Recap and Review

My doctor uses a funny little recording device at the end of each appointment to document everything that’s been discussed. While I now understand how sensible, even vital, it is to have a recount of the finer points of an appointment, I’d never seen a professional use a tape recorder before. In the beginning, it just seemed so melodramatic and over-the-top. Whenever he would launch into his full-bore recap of an appointment, I would avoid making eye contact and do my best to suppress my laughter. Who knows why it was so funny back then, watching him speak into a little recorder about all of the terrible things that were happening to my body. Maybe it was the novelty, but I imagine the routine allowed me just a few minutes to refocus my thoughts, not toward myself, but on him. Here was this intelligent, experienced, highly-respected physician in whom I had put my complete faith, hope, and trust, struggling to speak normally into this teeny, tiny little recorder. He’d start speaking, then stop, rewind, rephrase his words, and start over again. He’d repeat and stumble over words, often tripping over the easiest phrases. I would have the same trouble, of course; the daunting task of recording’s one voice never seems to be an easy one.

At the end of each recording session, Dr R. enumerates the action items that are to be taken between now and the next appointment. Whether I need to start (or stop) a prescription, get an X-ray, see another doctor, or watch for symptoms to change or arise, it’s all recapped at this time. It’s the perfect way to summarize what has happened, what needs to happen, and in some cases, what should happen. The conclusion of the recording session is the definitive moment when we can look each other in the eye and confirm that, yes, with absolute certainty, doctor and patient are in agreement. In fact, it’s like a temporary reversal of roles, where I get to be the teacher and him, the student. He gives the oral report, and then I grade him on it. It is Dr. R’s moment in the spotlight, the few minutes where he tries to succinctly recount everything we’ve discussed while I sit back, “testing” his recall. In most cases, he records the details accurately. In the rare event that he misses something, I signal for him to stop, I correct his mistake (or ask for clarification), and then he continues on. I used to only half-listen as he repeated the happenings of our appointment, but I soon realized that this simple, albeit amusing, routine exercise is as much for my benefit as it is for his.

I overheard a phone conversation between him and an evidently frustrated, confused patient once. She was denying that he’d prescribed a medication to her and he said according to the dictation, he had. Didn’t she remember him mentioning it at that time? He expects his patients to listen intently, correcting his mistakes and double-checking his work, and I’m happy to oblige.

Even if your doctor doesn’t utilize a Dictaphone, it’s still possible to get a summary at the end of every visit. Simply ask your doctor to review the highlights or repeat the action items to which you (or he) have been assigned. If you prefer and are so inclined, you can even recount the details to him. That will ensure that you have your facts straight.

Don’t be too hard on yourself if you find that you’ve missed major points of the appointment. I never realized how disoriented I was during my sickest appointments until recently. I made an appointment to see someone other than my primary doctor in my perinatologist’s office, thinking I was seeing someone new. At the start of the appointment with her, I immediately launched into my entire medical history as it related to Lupus and pregnancy. Halfway through my story, she pointed out that I didn’t need to rehash my past history. She had actually seen me before. In fact, she’d performed an outpatient surgery and had followed up with me several times afterward. Those previous appointments had taken place during the early stages of a bad flare and in the midst of a miscarriage, so I definitely wasn’t as alert as I could have been. Thankfully, she understood my haziness and wasn’t offended!

It’s understandable if you’re not as coherent as you’d like to be during your appointments. Just be honest with yourself, and realize you may need to prepare or take extra steps to ensure that you’re getting the most out of your visit with the doctor. You should benefit from every appointment, both parties working in unison to ensure a successful outcome and a healthier, happier you!

Friday, January 16, 2009

Mrs. Crankypants: Living with Pain

While I've done my fair share of tolerating pain in the past, I think I'm out of practice (which is a good thing!) Every 7 - 10 days, the pain from my recurring mastitis resurfaces, and I find that I become irritable, short-tempered, and downright cranky. I wish it weren't so, but it seems that the days of gritting my teeth and smiling my way through the aches and pains of my ailments are over. I say that's progress - since it means that my standards for healthy, pain-free living are higher than they used to be. In fact, I'd like to think that they're back to normal.

So what am I to do with the couple of hours where the pain from the infection seems intolerable, but eventually passes? I've tried a couple of things - all of which have worked pretty well:

Keeping my plans - Last week, when the pain came on shortly after I finished nursing, we were getting ready to leave for church. I considered staying home - but you know what? The pain wouldn't have subsided any faster, I couldn't have slept it off, and since Johnny and Deirdre were headed to Mass anyway - there would be no one home to complain to. So, I decided to go - and it worked. The pain, thankfully, lasted less than an hour, and my mind was sufficiently distracted for most of the time. We had plans to go out to eat afterward, and I was relieved that we could keep them. It's always such a bummer to have to reschedule a good meal due to pain and suffering.

Taking a hot shower - I've tried this several times, and it seems to work pretty well. The only downside? When I step into the shower, I instantly relive my years of taking hot, scalding showers to numb my body from Lupus pain, which wasn't ever a fun experience.

Exercising - I guess maybe I like this one because with Lupus pain, I could never pull this off. But with the pain localized in a body part not so affected by walking or running, burning a few calories seems to help.

Running errands and cursing up a storm - I'm supposed to be honest, right? One morning, I was in such pain - I had to get out of the house. Deirdre, Johnny, and the boys were sleeping, and I knew I needed to let off some verbal steam. I needed to pick up a prescription (for the infection, ironically) anyway, so I hopped in the car, pulled out of my driveway, and let my tongue run amuck. Thankfully, the drugstore's only a couple of miles from my house, so I ran out of choice words by the time I got there. But you know what? I felt a lot better, and Deirdre didn't have to get out her earmuffs.

Of course, with chronic pain, sometimes these workarounds aren't so successful. I just read that my nearest hospital offers a pain management program, designed to "help those with chronic pain return to the highest level of function and independence possible, while improving the overall quality of life." Sounds good to me!

They're offering a free pain management lecture later this month - a valuable seminar for anyone fighting Lupus, Arthritis, etc. I'll include the details of the lecture below, just in case there are some Northern Virginians reading along who are interested. Let me know if you attend!

Pain Management Lecture
Presented by Talal Ghazal, MD
Inova Mount Vernon Hospital
January 22, 2009, 7pm
Register by calling 703-750-8800.
Lecture is free, but registering is encouraged.

Wednesday, January 14, 2009

Henry goes to the Doctor

Okay, bad news first for ole' Henry:

After making the trip to the doggie opthamologist, we learned that Mr. H is not a candidate for eye surgery - therefore confirming that the little guy is and will be permanently blind for the remainder of his life (which is at least 32 more years, I'm sure.) His impaired vision shouldn't affect his lifespan, as long as we continue to medicate his eyes and keep them lubricated throughout the day. This is to reduce inflammation, which can cause Glaucoma, which could cause Hendo to lose an eye (or two).

Per the opthamologist, he's to get 3 different drops/ointments a day, 15 minutes a part, 2 -3 times a day in each eye. In addition, when we have the opportunity, we're supposed to give him a drop or two of wetting solution...just to keep his eyes from drying out. I told Johnny that we should add "Eye Ointment Administerer" to my business cards. Henry's SO good about letting me put the drops in, though...I couldn't ask for a better patient.

The good news? The opthamologist we saw was fabulous, and he's definitely the right guy to treat our little Henry. While I've never underestimated the value of seeing a specialist for my own health, I never realized how great it would be to see a specialized doctor for Henry. While we weren't dissatisfied with the care we received from our regular vet, it's obvious that the opthamologist is better equipped to educate us on Henry's condition. We now know so much more about Henry's situation and what we can expect moving forward - what a relief to get some concrete answers.

And that's why I'm so happy with my rheumatologist - he understands Lupus, knows what to expect and how to treat it. Even if it's a fever, a sore throat, or a bad flu, my rheumatologist is able to piece together what is Lupus related and what isn't - determinations that my primary care physician is never able to make. But that's okay - I don't mind going straight to the experts. And now Henry doesn't either.

This brings up an interesting question: Who is your primary Lupus doctor? A rheumatologist? A pulmonologist? Maybe it is your primary care physician, or perhaps your gynecologist. Let me know by casting your vote in the poll at the right. Look forward to the results!

Monday, January 12, 2009

Insurance Premium Woes

I recently received a notice in the mail from my insurance company. Guess what? My premiums went up. I know this is nothing new when it comes to insurance, but we're now paying almost $95 per month MORE than we did last year. Guess my 9 months of ultrasounds, bi-weekly blood tests, monthly urine samples, and high-risk labor and delivery costs didn't go over very well at the Blue Cross/Blue Shield headquarters.

Just because I'm a glutton for punishment, I thought I'd call to make sure there wasn't a mistake made, or to see if I could appeal the increase. While the woman on the phone was very nice, I definitely heard a giggle or two on the other end of the phone when I posed my questions. She said three things that pretty much shut me down:

*The increase is based upon the past year's insurance claims and benefits paid.

*She's never seen a premium increase reversed.

*She can't transfer me to the premium appeals department because it doesn't exist.

Despite the bad news she delivered, she was very sympathetic, citing how her daughter also had a chronic illness and she, too, had very high premiums. Well - misery loves company, I guess!

Friday, January 9, 2009

Make a "To Do" List

It's been awhile since I've posted a new Lupus Lesson, so be sure to check out the latest addition to the column on the right. It's an exercise cited in my book, Despite Lupus, due out this Spring. Here's a little background on the concept of the "To Do" list:

A friend of mine was diagnosed with cancer several years ago. She was young, single and completely blindsided by the diagnosis. She spent months in and out hospitals, undergoing various treatments like chemotherapy and a bone marrow transplant, trying to rid her body of the cancer. During that time, she kept a journal, logging her innermost thoughts, feelings and experiences that she later compiled into a book. In one entry, if not several, she describes making a list of all the things she was going to do once the cancer was gone from her body. On her list were things like running, dancing, and singing, among many others. Although she was bedridden and staring death in the face, she believed she would regain her ability to live again. She never lost sight of the possibility. She never gave up hope. Today, she is cancer free, probably off running, dancing or singing somewhere. I certainly hope she is.

Now make your own list - see the Lupus Lesson column on the right for details!

Wednesday, January 7, 2009

The Independence Factor

Since Mr. Henry (the pug) went blind last week due to diabetic cataracts, we've made some adjustments to try and accommodate his current condition. He goes to the bathroom in a new place outside (to avoid stairs), he is confined to two rooms in the house so that he can become ultra-familiar with his surroundings, and we talk him through even the simplest of routines (like going from the linoleum in the kitchen to the hardwood in the family room). His spirits are high, and even though Johnny and I find our patience running thin every once in awhile, we are thrilled that Henry is making as much progress as he is.

I've found that the hardest part of having a blind dog is allowing him the freedom (and time) to figure out how to cope without vision. It's taken up to 45 minutes just to get Henry from the kitchen to the front door so that he can go outside -and then another 20 while he figures out where and how he should relieve himself. (Don't even ask how long it takes for him to get back inside and back to the kitchen.) He's getting more efficient every day, but it's been very tempting to just pick him up and carry him out so that he can get the job done. He hates when we do it though - watching him try and re-orient himself from scratch isn't any fun (I'll liken it to a panic attack.) We've succumbed a couple of times, which isn't so bad, so says the doctor, but we know deep down how important it is for Henry to exert his independence and find his way around on his own.

In watching Henry, I'm reminded of my own experience with Lupus. When your health has been compromised, the last thing you want is to have someone else doing everything for you - as if you can't help yourself. While I realize Henry doesn't suffer from the exact same psychological effects that I do, I know he needs his space. Our vet has confirmed that it's best to let Henry be Henry, as pampering him too much is only going to prevent him from learning how best to deal with his new situation.

I can tell that he likes figuring things out on his own. He wags when he manages to find his way outside, and seems pleased when he makes it to his bed independently. Most of all, he likes being treated the way we've always treated him - like a perfectly, normal little puglet. Certainly not like an invalid. (Although if bonbons were included in the "invalid" scenario, he might think twice.) The next time I start to rush Henry from one place to another, I'll remember how much I appreciate being treated like a normal person, despite Lupus.

Monday, January 5, 2009

Bruising that just won't go Away!

If you recall, I took daily Lovenox shots (because I carry the SSA antibody which can cause miscarriage) during almost 7 months of my pregnancy, stopping about 6 weeks before my due date. The last shot I gave myself was on September 15th, and yet I still have bruises where I administered the shots.

I've read about several remedies online - aloe vera, Neosporin, vitamin E - but each product gets mixed reviews. Any foolproof ideas from the peanut gallery?

Friday, January 2, 2009

2009 is Looking Good!

Wants some good news for '09? Here's mine:

1) My hair loss (caused by pregnancy) is tapering off, as there is no longer a sea of long, dark hair covering the tub floor when I shower. Yippee!

2) The third round of antibiotics has, I think, taken care of my infection (caused by breast feeding). The doctor has prescribed an additional round of a different medication to knock it out for good - so keep your fingers crossed.

3) Deirdre is cuter than she was last year.

4) I can fit into my pre-pregnancy pants.

5) Deirdre is sleeping through the night...for now.

6) Henry the Pug's diabetes is beginning to stabilize.

That last bit of good news (#6) is somewhat bittersweet, since Henry has recently gone blind due to his disease. Dealing with a blind dog is proving to be quite a challenge, so I'm just thankful that Johnny and I are able to tackle it together. Henry may be a candidate for eye surgery down the road, but for the time being, he's going to have to tough it out. He's a good guy - and means well - so we're trying our best to help him learn his way around. It requires more patience than I have some days - but we'll make it through. It's Henry we're talking about, after all.