Wednesday, November 26, 2008

Deirdre's First Music Video

So you knew it was coming...a full 3-minute video of our little munchkin. Johnny put the music montage together a few days ago, and it still makes me tear up every time I watch it. Hope you enjoy the clip at the beginning - mind you, I was talking to my sister-in-law, who at the time, was a month from delivering her first baby. While my reassurance might have sounded convincing at the time, she went on to have one of the most trying, painful deliveries ever - so much for positive thinking!

(It should also be noted that the producer of the video conveniently left out the comment I made right before this one...that my 12 hours of labor sans epidural were awful!!!)

Here's Deirdre - Enjoy!

Monday, November 24, 2008

Chronic Illness - It must run in the Family

Based upon my portrayal of Henry the Pug in previous posts, one might think that he's just one big, fat trouble-maker (which he is), but it's time to give that guy a little credit. Just 3 short weeks ago, Mr. Hendopolus was diagnosed with diabetes. He's been a real trooper so far, and we've seen a huge improvement in his energy level and overall disposition since we started treatment.
He was pretty withdrawn and lethargic there for awhile, bringing his mom (and dad) to tears on several occasions. We were still on the emotional rollercoaster from bringing one little baby into this world when another of our "babies" started to poop out on us. He was one sick little guy!

Of course, there isn't anything we wouldn't do for Henry - and so we're doing everything we can to get that guy back on track. He's doing his part, too - bravely taking his insulin shots twice a day and reluctantly switching to diabetic doggy food. Adjusting to life with a chronic illness is never easy - and it usually isn't very fun. Noting the changes Henry has had to make to accommodate for his new life with diabetes reminds me of those alterations I've made in my life with Lupus. They're really quite similar - although no one ever followed me around with a urine stick to check my pee pee for glucose. (Although the 24-hour urine test to track protein levels is no picnic!)

See if some of the changes Henry's had to contend with sound familiar:

1) Frequent visits to the doctor - For a guy that hates going to the vet for even a nail trim, Henry is learning to adjust to his weekly visits. Until we get his blood sugar and insulin levels regulated, he'll be spending at least one day a week at the vet while they perform what's called a glucose curve. I'm proud of him, though - he's getting less reluctant to go each week, and you should see the way he struts around when we come to pick him up. He practically high-fives the vet technicians as he trots out the door.

2) Overwhelming number of prescriptions - In addition to the two shots of insulin a day, he's been on an antihistamine, an antibiotic, and prescription dog food since his diagnosis. He also gets eye medication twice a day for his "chronic dry eye", which flared up due to the diabetes. He never complains, though - and takes his shots like a real champ - no flinching at all. He's great about his pills, too, but I chalk that up to the peanut butter we dip them in before administering. We figure it's the least we can do.

3) Sleep disruption - Because the shots have to be given 12 hours apart, Henry can no longer lounge in bed until late morning (or early afternoon as he's been known to do.) Now, he has to be up bright and early every morning, so that we can fit in the shots twice a day. I know how he feels, as I recall having to revise my sleep schedule for many a medication. Sometimes it was accommodating drugs like Fosomax or Actonel, where you have to take the medication at least an hour before you eat, and have to remain upright for at least 30 minutes after you take it (i.e. you can't go back to sleep). Other times it was for Prednisone or an anti-inflammatory, where I'd set my alarm 45 minutes before I had to get up in order to take the meds and allow them to start working before attempting to move my pained-stricken body out of bed. It's an inconvenience no matter how you look at it.

In addition, because Hen's body chemistry is still a little "off", he drinks a ton of water throughout the day (and the night), which makes him prone to having accidents. He was getting up three times a night to drink what seemed to be a gallon of water, and then we'd have to carry that lethargic little guy downstairs (three times a night) so that he could go to the bathroom. The times we skipped the "potty outside" step, I ended up washing all of the bedding the next morning - a task I only had to perform twice before we decided something had to change. Thus, we've moved both pugs out of our bed at night - a move we probably should have done months ago (if not years) - so that they now sleep in the kitchen where linoleum is the flooring of choice and the door to the outside is just steps (rather than a flight of stairs) away. The first night was a tough one - Mr. Henry took the opportunity to perfect his howl and we still had to let him out during the night, but every night since then has improved. Both boys are sleeping soundly through the night and they barely move from their comfy doggie bed when we come to greet them in the morning. Guess they're enjoying the extra elbow room as much as we are.

3) Sacrifices in diet - As mentioned, Hendo is now on high-fiber, low carb diabetic prescription dog food - a big change for the gourmand in the family. He lost almost three pounds the first week he was on it - but he's slowly warming up to it. I remember making changes to my diet in an effort to improve Lupus - eating less dairy, cutting out nightshade vegetables, eliminating those foods for which I had developed an allergy - and it was a big pain. I felt ripped off - like I needed one more thing to adjust in my life. I'm sure Hendo feels the same way.

4) All-around lifestyle changes - In addition to the changes above, Hen is also struggling with the nerves in his back legs, his eyesight, and the fact that his parents follow him around at least once a day with a urine stick to test glucose levels mid-day. He's getting poked and prodded like never before - and now he has to sacrifice privacy while he tinkles. And yet he continues to be his loving, wonderful self - brave and courageous on all accounts. Who knows - maybe he'll write a book about his illness. Diabetes and Me: A Pug's Plight. Anyone want an advanced copy?

Friday, November 21, 2008

Reproductive Lupus Chat - Good timing!

So back on Wednesday, October 8, I had planned on tuning into LFA's Webchat on Reproduction, Lupus, Antiphospholid Antibody Syndrome and more...but instead, I had a little lesson on reproduction of my own (since that was the day I gave birth to Baby Deirdre!)

Nonetheless - some valuable information was exchanged, and I thought I'd provide a link so that you could check it out. Here's the background info on the moderator... and here's the link to read the transcript. Enjoy!

Reproductive Health & Lupus" chat with guest expert Dr. Bonnie; Wednesday, October 8, at 3 p.m. Eastern.

Since 1993, Dr. Bermas has been an attending doctor at the Robert Brigham Arthritis Center. She has a special interest in the treatment of rheumatic diseases during pregnancy, the antiphospholipid antibody syndrome, and lupus. In 2005, Dr.Bermas was named the clinical director of Systemic Lupus and Antiphospholipid Syndrome Center.

Wednesday, November 19, 2008

Postpartum Misconceptions

I can't believe I've been a mom for 6 weeks! It's amazing how much Deirdre changes from week to week. Still the cutest girl on the block, though, no doubt about it!

Now that we're knee-deep into parenthood, I've realized I had some misconceptions about life with a little one, all of which caused me unnecessary stress and anxiety during my pregnancy. I was actually pretty calm (and fairly realistic) about what would happen postpartum (hence the reason I hired a babysitter 5 days a week), but other people (and things I read) had me scared that life with a newborn would be so hard (especially with Lupus) that I would really struggle. While I have made some major adjustments in how I spend my time now that litte Dee is around, I'm pretty darn happy about the way things are turning out. If you had this adorable face to wake up to each morning, wouldn't you be pretty content, too?
So here are three things I assumed would happen, but haven't:
1) My first misconception was that I would be SO sleep deprived, I wouldn't be able to handle it. Pre-Dee, I was getting 10 hours of sleep at night, plus an hour and a half during the day. Even though she's a great sleeper, I'm still averaging only about 5-6 straight hours at night. I also get a couple of hours in the morning (thanks to Johnny who does everything he can to help out, given the constraint that I'm the keeper of the food supply), and then another 2 hours in the afternoon (thanks to our fabulous babysitter, Leticia.) I know cumulatively, I'm getting about the same amount of sleep, but I assumed my body wouldn't adjust well to getting my rest in chunks. Goes to show what I'm capable of when I'm working from a good, healthy base.

Note to all parents following along: I KNOW I have a great sleeper on my hands, and that I'm getting more sleep than you probably did during an entire week of your newborn's life, but I've learned that fatigue can be a real killer for me and my Lupus. My health depends on the fact that I avoid it at all costs. Don't hate me because I'm well-rested!

2) My second misconception was that the learning curve on parenthood would be an insurmountable one. I'm certainly not insinuating that we've got the whole parenting thing figured out, or that it hasn't been trying. What I didn't expect was that our instincts would kick in from day 1, and that feeding, changing, rocking and loving a baby doesn't take brain power...just a little patience. Deirdre has been particularly patient with her parents and big brothers - all of whom had to adjust to her arrival, some more than others. ---->>>>

3) My third misconception was that a flare was inevitable, and that I wouldn't be able to do anything to avoid it. I don't want to get ahead of myself, but if you read Monday's post, you know how quick I've been to alert my doctors to any and all changes in my health. I think that's been a key ingredient to my well-being. I've stayed super-attuned to my body, asked for help when I needed it, and utilized the heck out of my doctors. A prescription for success, I'd say...who knew taking care of yourself could be so simple?

Monday, November 17, 2008

The Lupus Fog


Thought some of you in the D.C. Metro area might enjoy attending the following workshop, put on by the Lupus Foundation of American, Greater Washington chapter. Because little Miss Deirdre is keeping me busy, I won't be able to attend - but let me know if you do. I'd love to hear how it goes!

Cognitive Dysfunction and SLE

According to the Lupus Foundation of America, "as many as half of all people with lupus describe feelings of confusion, fatigue, memory loss and difficulty expressing their thoughts. This collection of symptoms is termed cognitive dysfunction, although many people call it lupus fog." On Tuesday, November 18, 2008, from 2-5 PM, LFAGW will address this issue in a special workshop on Cognitive Dysfunction and SLE.

The Workshop will take place at 2 PM the Marvin Center at George Washington University. Please register by sending an email with your name and the subject heading "Cognitive Workshop RSVP" to info@lupusgw.org.

50-year Hiatus is Long Enough!


Guess how long it's been since the FDA approved a drug specifically designed to treat Lupus? That's right - 50 long, drawn-out years! Thankfully, research and development haven't been at a complete standstill for all that time. Much effort has gone into developing a Lupus-specific drug, and hopefully one is right round the corner.

Until then, the Lupus Foundation of America is encouraging the Lupites of the world to express, in our own words, what it's meant to have gone 50 years without a Lupus-specific drug. Our submissions will then be used to encourage Members of Congress to allocate more funds to the development of a Lupus-specific drug - and who better to convince them then us?! Check out LFA's blog post for details on what should be included in your submission, and be sure to do so before the deadline of November 20th. Thanks for participating!

Friday, November 14, 2008

Delegating - Who knew I'd be a Pro!

Even though I know the proactive approach I alluded to in Monday's post is making a big difference in how healthy I am, I'm sure there's another reason why I'm doing so well. Meet Leticia, the world's greatest babysitter!!

Leticia comes over every afternoon from 1-5pm Monday through Friday to watch little Miss Deirdre, giving me ample opportunity to fit in a good 2-hour nap, write a quick blog entry, or do a few things around the house - all of which leave me feeling refreshed, renewed, and most importantly, healthy. She enables Johnny and me to grab a quick lunch date together when we can, and I can even run a few errands now and again, although I usually have to be careful about trying to fit in too much. (The time or two I've skimped out on a full nap, my joints have paid the price.) What's more, she prepares dinner for us most evenings before she goes, does the dishes, washes, dries and folds the laundry, changes the sheets on the bed (as needed), takes care of the dogs, and treats our little angel as if she's her own. In fact, she has grown children of her own, and is great about helping this new mom figure out just what Deirdre is up to sometimes. I can't tell you how lucky we are to have found such a wonderful person to watch our little munchkin for a few hours each day - what a godsend she's been!


In working with Leticia, I've learned that there is an art to delegating, and although I never thought I'd be so good at it, I think I've perfected it. (I'm sure Leticia would say so!) In order to stay healthy as Lupites, we need to teach ourselves how to take advantage of the opportunity to delegate - it not only alleviates stress and strain on our bodies, it allows others to take part in our quest for a healthy lifestyle. Whether it's at home, the office, or anywhere in between, here are my tips for making delegation work for you:


Preparation: While it takes a little forethought to have Leticia make dinner each night, it's worth it! Over the weekend, I try to rummage up a few recipes that would be good options for her to make during the week, and then I make sure I have the ingredients on hand. I do my best to remember to pull out anything from the freezer that needs to be defrosted, and I go over the recipe with her once she arrives at 1pm. I also try and bring down any laundry that needs to be done, and we try and run the dishwasher before she comes so that she can unload it (and fill it up again with our dirty dishes) while she's here. In addition, I make sure I have a bottle ready for her (usually pumped the night before) so that she can feed the little lady anytime during the afternoon - leaving me free to nap, relax, or run errands. So far, my prep work is paying off!

Organization: While organization comes pretty naturally to me, I know that keeping the house in order makes utilizing Leticia that much easier. She knows where to find everything (because most things have a place in our house), so she can refill the diaper stash, easily find ingredients in the kitchen, or put away the dishes without having to constantly check with me. I'm telling you - if our house was scattered and disorganized, I would spend way too much time answering her questions about where something goes. She likes the independence, and I love my time "off"!

Relaxation: Being organized and relatively good at preparation, I'm not that great at letting other people do things for me. I think it's usually easier to just do it myself, but when I'm running on empty, the benefits of having others "do" for me far outweigh the frustrations of not having something done exactly as I might do it. In fact, it's becoming easier and easier to just relax, and enjoy the fact that Leticia is feeding the munchkin, making dinner, or folding laundry while I'm sleeping soundly upstairs. Sure, she may not make a recipe exactly like I would (although that has yet to happen), or she may change Deirdre into an outfit I might not have chosen - but let's be honest - who really cares? She's doing it so I don't have to - and that's the bottom line. I've found that my relaxed attitude has carried over into my relationship with Johnny, too. He has his way of doing things (be it with little D, or the boys, or around the house), and that works for me. Rather than thinking, "oh, I wouldn't have done it that way", I think, "thank goodness he's doing that and not me!"

Of course, I think back to my years working in an office, and think how great it would have been if I could have relaxed a little bit more and allowed others to help out now and again. I ran myself ragged most days - and who knows, maybe Lupus wouldn't have come on so strongly if I had learned to delegate better. Of course, the sicker I became, the more delegating I did, but I wasn't enjoying it like I do now. If you're going to let someone do something for you, don't fret about the outcome. Just enjoy the fact that you're not doing it yourself!

Wednesday, November 12, 2008

Guest Post from the author of Keep Working, Girlfriend!


For today's post, I'm pleased to welcome Rosalind Joffe, co-author of Women, Work and Autoimmune Disease: Keep Working, Girlfriend! Rosalind is a Chronic Illness Coach, who is devoted to helping others juggle their chronic illness while navigating the pursuit of a career.

Rosalind devotes a chapter in her book to talking about one's chronic illness. Additionally, she has a booklet, Are You Talking, and frequently blogs on the subject. Here, she describes why she gives this topic so much attention and if she thinks that talking about chronic illness is more difficult for women than men.

*****

Why do I focus on the topic of communication? Because it’s what people seem to wonder and worry about.

It’s the first question that reporters pose to me. And in my work with my clients (as a chronic illness career coach), I’ve seen repeatedly that when people can’t talk effectively about what they can and can’t do, they retreat – especially from the workplace.

Retreat isn’t a position of strength. We want to look at how we can make ourselves stronger in the face of this thing that weakens some parts but not all of us, disabling symptoms.

From what I’ve seen there are at least two reasons that talking about chronic illness is difficult.

First, chronic illnesses vary greatly in disease course and pattern. What’s true for one person, isn’t true for another. That means that it’s up to you to explain your experience with this disease and how this affects you.

Secondly, most chronic illness symptoms are invisible. This means that no one knows how you‘re feeling or what you can/ cannot do at any given time. The burden of describing this falls to you.

Either communication challenge can derail even the most confident person. Trying to be concrete, upbeat and self assured when you’ve “lost your game” is tough.

I discuss this in detail and even have a 2 page list of tips in Chapter 5 in my book. You can use the tips as a starting place and conform them to your needs.

I do think that women struggle with speaking about their chronic illness effectively more than men do (though certainly there are exceptions!) I think this is because of the invisible nature of most chronic disease. From client’s stories and my own conversations, I’ve seen that stereotypes about women as “hysterical” or unwilling to work hard persist.

When they have to discuss disabling symptoms, particularly at work, many women fear that they won’t be credible. Regardless of whether it’s true or not, this idea puts them in a defensive posture. It’s difficult to be successful when you’re on the defense.

When you live with chronic illness, you know the communication challenges. It’s a lifelong struggle. Symptoms change as do your circumstances and you can never be completely prepared. But if you master the fundamentals, you’ll be more resilient when you hit a speed bump.

For more on Rosalind and her book, check out my earlier blog post or her website.

Monday, November 10, 2008

Symptoms: Pregnancy or Lupus?


I'm happy to report that postpartum life with Lupus has been going pretty well. One of my biggest fears was that I would go into a flare after delivering, but so far, so good. I've had a couple of symptoms to contend with (which I'll describe in detail below), but at this point, most of them have subsided. I'm pretty sure they were pregnancy-related, but I couldn't help but wonder if Lupus was rearing its ugly head or not. It's hard to know for sure, but I didn't waste any time trying to figure it out on my own. With the appearance of each symptom, I called either my obstetrician or my rheumatologist within 24 hours - giving me peace of mind and a diagnosis almost immediately. I learned the hard way years ago that it doesn't pay to wait to call - why suffer unnecessarily, right?

Here's a quick rundown of the symptoms I was experiencing. You'll see why I was a little confused - there's a lot of crossover between lupus and postpartum:

Hair Loss - Thankfully, my sister-in-law (who has two kids) warned me of this years ago, so I was somewhat prepared for strands of hair to start appearing in the shower after delivery. But I have to admit that once they started falling, all I had were visions of my last bout of hair loss caused by Lupus - which left me with only about 30% of my hair. I'm not ready to cut off all of my hair again like the last time (see my previous post for details), so I'm hoping the loss will abate soon. It actually started a couple of days before I gave birth, and hasn't stopped since. The loss is increasing, but I'm still pretty convinced it's just the aftermath of pregnancy - as is my doctor. Nonetheless, we'll be keeping a close eye on it in the coming weeks. Keep your fingers crossed!

Fever - Although it's typical to run a fever once you begin nursing, I'm always on the lookout for low-grade fevers, which can easily creep up to over 100/101 in response to a Lupus flare. So when I started running a temperature of 100.3, I immediately phoned the doctor. When I listed all of my symptoms, she was able to deduce that I had an infection caused by breast-feeding, and immediately prescribed an antibiotic over the phone. I had the medication that evening, and within a day or two, my symptoms began to subside.

Swollen Lymph Nodes - Again, this is such a typical manifestation of my Lupus flares, it had me confused. The first time I called into the doctor's office, they told me they were clogged milk ducts, but upon seeing the lactation nurse at the pediatrician's office, it was confirmed that they were definitely swollen glands. Turns out that swelling was the first indication of the infection, and with the antibiotic, they slowly went down.

Infection - As explained above, the infection was caught early and has now gone away, but Lupites are often prone to infections - so I wanted to make sure it didn't get out of hand.

Chills/Sweats - I'm assuming these were caused by the hormonal changes occurring in my body, but I used to battle these during my flares. Also could be from the fever. Thankfully, they're almost gone!

Joint Pain - This is the only one that my doctor and I agree is a manifestation of Lupus.

One evening, I noticed a little joint pain as I was going to bed (I put it at about a "4" on the scale of pain), but when I got up to feed Deirdre in the middle of the night, the pain was up to about a "6". I found myself really struggling to nurse her because of the pain, and in order to hold her and burp her - I had to ball up my hands into fists to alleviate the pain as much as possible. Normally, I might have waited a few days to see if the pain would go away on its own, but this time there was a little munchkin's well-being at stake. What good would I be if I couldn't hold my little angel? So first thing in the morning, I was on the phone with my rheumatologist. We went over all of the symptoms I was having and he was able to prescribe a medication change over the phone, given the fact that I would be seeing him at a pre-scheduled appointment in less than two weeks. So, per doctor's orders, I'm still on 400mg of plaquenil a day, plus 5mg of prednisone. The combination seems to be doing the trick. provided I don't skimp on my long afternoon nap. I'm pretty sure that's why the joint pain appeared in the first place!

There you have it - the latest and greatest in life with Lupus (and a newborn). I'm hopeful that 5 mg of the magic little pill will be enough to keep a flare at bay...seems to be working so far!

Friday, November 7, 2008

Happy Birthday, Mamma Gretter!!


It's time to celebrate another birthday in the family - this time the birthday girl is none other than my beloved Mom!

Mom - here's wishing you a very Happy Birthday and hoping you get everything you want on your big day. (I'd say two new grandchildren in the span of three weeks isn't a bad haul!) Love to you!!!

Despite Lupus gets some Ink!


A big fat thank you to Wick Davis at the Lupus Foundation for spotlighting my blog on the LFA website. Here's a link to the shoutout...and while you're there, be sure to check out Wick's other postings. He always offers up something new and interesting! Check it out here.

Wednesday, November 5, 2008

And Rosie makes Three!

That's right, Deirdre welcomed another cousin into the world on Monday!

Miss Rosie Sharp Gorman was born early Monday morning, November 3rd to proud parents, Pat and Jen Gorman (Johnny's brother and sister-in-law). Rosie took her own sweet time getting here, though - Jen checked into the hospital on Saturday evening for an induction...and Rosebud didn't arrive until almost 36 hours later. Mom and Dad were wiped out, but Rosie arrived unscathed - in fact, she was perfect in every way. Guess she's just establishing who's in charge early on in the game. Too bad she's so cute - she'll probably be able to get away with it!

Everyone is doing fine...and Deirdre is itching to meet her new cousins. Rosie and Liam are welcome to a play date any day of the week!
And here's a shot of the big D posing with her more established cousins, Emma, Mary Kate, and Molly.
What a line up!