Friday, May 30, 2008

Fibromyalgia - Chronic Widespread Pain


Here's a bit of information on Fibromyalgia, which is a condition sometimes seen in Lupus patients. Thankfully, I'm a one-disease gal (Lupus only), but many of my friends in Lupus Support Group have FM and Lupus. Read on to find out more!

(All information below courtesy of Medscape: Today)

FM is a medical condition characterized and defined by the hallmark of chronic widespread nonarticular musculoskeletal pain.[1]

Another characteristic feature is that no physical reasons for the pain, such as injury or inflammation, can be localized -- in fact, this often leads to belief by health care workers that patients are simply "malingering," and this can potentially delay diagnosis and treatment. In fact, many patients with FM are not diagnosed, and few patients are receiving appropriate treatment.[2] Current thinking based on the latest evidence is that FM is not a discrete illness but is rather part of a large continuum of central pain and somatic syndromes caused by dysfunction of central pain processing. It may even be a more global problem with sensory processing that is not just limited to processing of pain because people with FM are also sensitive to several different types of stimuli.[2]
It is important that health care professionals are aware of the characteristics of FM pain and have a high index of suspicion for further workup if necessary to make an accurate diagnosis.

Other characteristics of FM pain include the following:
Diffuse or multifocal pain
Aching all over
Stiffness that is typically present upon arising in the morning and improves as the day progresses
Neurologic qualities (eg, aching, numbness, tingling, burning)
Dysthesias or paresthesias
Pain "moves around" to various parts of the body
Pain comes and goes very rapidly, or "waxes and wanes"
Discomfort occurs with touch or when wearing tight clothing
Low back pain that radiates into the buttocks and legs
Pain and tightness in the neck and across the upper posterior shoulders
Pain in visceral structures

Many of these are characteristics of "central pain" and are quite different from "peripheral" pain, where both the location and severity of pain are typically more constant.
Two other important features of FM pain are a subjective swollen joint feeling without objective swelling and paresthesias without objective neurologic findings.[1,3] In addition, the duration of the pain is an important feature to determine because patients with long-standing pain are more likely to have FM.[4]

And here's a typical patient profile for FM:

CW, a 44-year-old mother of 3 children aged 5, 7, and 11 years, who has recently taken a new job, presents to her primary care physician for a follow-up visit for management of her chronic pain due to fibromyalgia (FM). She reports a visual analog scale pain score of 7 out of 10, which is worse compared with her last visit 6 months ago. She is concerned that "I can't concentrate at work and learn my new job because of the constant aching pain, and I can't seem to think clearly." She also complains of trouble sleeping and fatigue. She would like to start exercising but has avoided it because of pain. She specifically complains of pain in her knees, which she reports being swollen and inflamed for the last several months, and this finding was confirmed on physical exam.

Medical history: She was diagnosed with FM 10 years ago by a neurologist and has been managed by various primary care physicians since then. She also has irritable bowel syndrome and chronic nonallergic rhinitis.

Family history: Her mother has FM and her father has coronary artery disease and type 2 diabetes mellitus.

Medications: Sertraline 50 mg bid, Zolpidem tartrate 10 mg at bedtime, Ibuprofen 800 mg tid
For more information on FM, diagnosis and treatment, click here and here!

Wednesday, May 28, 2008

Listen Up, Doc - Tip #1

After years of working closely with doctors to successfully manage my disease, I've learned a thing or two. Check out the tip below - hopefully, it will help you in your next appointment!
Tip #1: Ask Questions

The easiest way to assert yourself during a doctor’s appointment is to ask a question. In doing so, you instantly convey interest while elevating your doctor to an assumed position of authority (which he/she will probably appreciate). Even if it’s done intentionally, your query instantly sets a framework within which both you and your doctor can begin to work. Up until you speak, your doctor is left to interpret your head nods and strings of “uh-huh” the best he can. How is he to know those nods of confirmation are actually nods of confusion? Instead of misleading your doctor, clarify your level of comprehension by asking a relevant question. Even if it’s just repeating what your doctor has said in a question format, it will force your doctor to take pause and consider that he is indeed talking with you, not just at you. It will also appear that you’re paying attention and engrossed, further demanding that your doctor be precise and stay sharp, since his patient is listening intently!

*Do you get unspoken resistance when you ask a question?

Maybe you’re not asking your questions at the most opportune time, or perhaps your doctor already covered the information you’re requesting. In case of the former, ask your doctor when it would be most appropriate for you to ask your questions. Suggest, for instance, the beginning, the end, or mid-appointment, when the subject is actually being discussed. He may have a preference, and if so, it’s in your best interest to adhere to it. It’s a simple adjustment you can make that will help you get the answers you want while not disrupting your doctor’s flow.

In the case of the latter, perhaps you need to bone up on your note-taking skills during your visit. Take in a pad of paper and a pen, or turn to your notes section of your PDA to help. Jot down items of interest during the appointment, underlining a confusing word or phrase to remind yourself that what your doctor just said didn’t make sense or needs more clarification. When you’re taking notes, your body language, or lack there of, may also indicate what’s going on in your brain. If he starts to rattle off the steps you need to take before beginning a course of medication, for example, and you’re not writing anything down, he’ll take the cue that he needs to stop and review what he’s saying so that you can make note of the pertinent information. I’ve formed the habit of turning on my Palm Pilot, going to my notepad screen, and creating a new file or reviewing the notes that I’ve already made for that particular appointment before the doctor walks into the room. When he enters, he sees my Palm up and prepped for action, acknowledging that I’m ready and engaged - indicating that he should be, too.

*Does your doctor speak too quickly for you to take notes?

Take in your pad of paper, get ready to write, and when his pace begins to quicken unnecessarily, ask him to repeat and review. Soon enough, you’ll find a pace that works for both of you. Intuitively, he may begin to slow his words when there’s something that he needs to make sure you understand. If he accommodates you, make a note to thank him after the appointment. Progress and improvement shouldn’t go unnoticed.

*Don’t think your appointments warrant any questions?

Maybe your doctor isn’t in the room with you for more than five minutes, and you’re convinced there’s no time to get a word in before he’s on to his next patient. I promise you – if you show up with a pad of paper and a list of questions, you’ll get some air time. If you are limited on time, make sure you prioritize and ask all of your imperative questions first. If your list is a bit long to tackle in one appointment, don’t be offended if your question/answer session is cut short. Ask how it’s best to get the remaining questions answered before your next appointment: Could you email him, or is there someone else in the office you could talk to today or later in the week? If the questions aren’t urgent and you have to wait until the next appointment to discuss them, that’s okay. Just make it clear that during your next visit, you intend to have them answered. This can be as simple as saying, with a smile, “Okay, I’ll just make sure I ask them at the beginning of the next appointment.” It’s not a question your posing; it’s an expectation you’re providing. In that single sentence, you have diplomatically, yet effectively “managed” the situation. Just be sure to follow up at the next appointment: have your pad of paper out and ready before the doctor comes in, reminding him that you need to be heard from, and you plan on doing it today.
I'm sure I don’t have to explain that the idea isn’t to harass, inconvenience, or badger your doctor with mundane, irrelevant or inappropriate questions. In fact, it’s just the opposite. You’re trying to engage your doctor so that your needs can be met and your issues resolved. You’re looking to him for his expertise, wisdom, and knowledge – not to assert yourself for your own personal gain. The objective is to improve your health care, and if engaging in an applicable question and answer session lays the foundation for that to happen, jump at the opportunity.

You might find that your questions serve as a gentle, helpful reminder to your doctor, jogging his memory about something he needed to discuss with you. They could in fact prompt an entire conversation that might not have otherwise taken place. This happened to me recently, when my mother-in-law, out of curiosity, asked how my doctor planned on reducing a certain medication I was going to stop later that summer: would it happen all at once, or would I taper off over the course of a few months. In all of the discussions my doctor and I had about that particular prescription change, we had never really spoken of this minor detail, so I made a note to ask him at my next appointment. Sure enough, when I posed the question to him, he had a entire strategy planned out for how I was to taper off the medication. He and I immediately decided to start tapering off sooner than originally planned in order to account for the additional tapering time. I’m sure the issue would have eventually come up, but thank goodness for inquisitive in-laws to move the process along!

Tuesday, May 27, 2008

Tune in to the Live Lupus Chat on 5/28: Medication Management -


Join the LFA Webchat on Wednesday, May 28, 2008 for the "Medication Management & Lupus" chat with guest expert Dr. Joan T. Merrill on Wed., May 28, at 3 p.m. Eastern, and get your questions answered.

About the Guest Expert: Joan T. Merrill, M.D., is the Medical Director of the Lupus Foundation of America. She is currently Head of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation (OMRF), OMRF Professor of Medicine at the University of Oklahoma Health Sciences Center, and Assistant Professor of Medicine at Columbia University in New York City. She received her medical training at Cornell University Medical College, New York, NY, followed by an internship and residency at St. Luke’s/Roosevelt Hospital Center, a fellowship in rheumatology at NYU Medical Center, and a basic research fellowship in the Department of Pediatrics at Columbia University.

Dr. Merrill’s research focus is the study of genetics and pathophysiology relevant to atherosclerosis risk in lupus and antiphospholipid syndrome, for which she has received multiple foundation and NIH grants. She has numerous publications in journals such as the Journal of Immunology, the Journal of Clinical Rheumatology, and the New England Journal of Medicine. She is a sought-after speaker at clinical symposia both nationally and internationally.

Dr. Merrill is a member of the Lupus Foundation of America’s Medical-Scientific Advisory Council. She is the co-chair of the American College of Rheumatology’s Study Group and member of the Food and Drug Administration’s Arthritis Drugs Advisory Committee, in addition to many other active professional appointments.

Chat begins as follows:

3:00 p.m. Eastern
2:00 p.m. Central
1:00 p.m. Mountain
12:00 p.m. (Noon) Pacific
11:00 a.m. Alaska
9:00 a.m. Hawaii


Login to LIVE CHAT , Submit a question in advance, or Check out transcripts of previous live chats. Just so you know what to expect...here's what you'll find when you click on the LIVE CHAT link above:

"Bookmark this page for future reference. Open this page approximately 10 to 15 minutes prior to the scheduled start of the chat. Click on your Web browser's "refresh" button to reload the page. Enter a Nickname in the log-in box below and then click on Connect. It may take a few moments for the chat window to load.When the window opens, click on the "Rooms" tab and select the Live Chat you wish to view.A countdown will begin approximately 5 minutes prior to the start of the Live Chat to verify the window is functioning."

Despite Lupus' take on live chats: The great thing about a live chat is that you don't have to sit and stare at the computer screen the entire length of the program. If a line of questioning is particularly interesting to you, you can tune in. Otherwise, you can be working on other things on your computer, and check back every few minutes to catch up on the questions and answers being discussed.The first time I participated, I worried that it would just be a waste of time, but in fact, I learned a lot and was surprised how quickly the time passed. And if you think of a question, be sure and submit it before the chat begins. I submitted two questions during the course of the chat, but neither were addressed directly (due to time constraints, I assume.) However, there were other questions that were asked and answered that I hadn't even thought of, so it was a great experience. Check it out!

Monday, May 26, 2008

Let There Be Hope

Thought you might enjoy another excerpt from my book, "Despite Lupus." Taken from the first chapter, currently titled, "Choose Well," the chapter deals with the burdens you feel in your life with Lupus, and the proactive approach of deciding to start living well with your disease.

Imagine for a moment the thought of living well. You might have to close your eyes to do this, since it’s a far cry from the life you might currently be living. Envision yourself doing the things you long to do, maybe things that you’ve not done since the day you were diagnosed. You can probably think of activities, feelings and emotions that you believed were long gone, indisputable casualties of the disease. Whatever those lost treasures are for you --strength, agility, confidence, or worthiness -- picture those things being restored to you as if they’d never left in the first place. Imagine the opportunity to feel whole again. Imagine the possibility of looking and feeling like yourself. Imagine the awesomeness of being hopeful.

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.

Try making your own list, including everything that you want to be able to do, say and feel once you’re on the road to “living well". Jot down everything you’re thinking - don't edit it just yet -there will be plenty of time for that later. Now is the time to be open and honest with yourself. Don’t be shy or reluctant about putting down things of little consequence or things that you’ve never admitted hurt to have lost. Now is your chance to uncover what it is that you miss the most about life right now. It’s your opportunity to grieve for yourself, while laying the ground work for a hopeful future.

Another friend of mine turned me on to this idea of grieving for my old self and abilities. At first I thought it would be a little depressing, but then I realized that it was one of the most uplifting and refreshing things I’d done since being diagnosed. For once, I was comforting myself, taking stock in the things that I really missed and reassuring myself that it was okay to be sad about it. More than that, it was okay to admit it. In making your own wish list, you allow yourself to come to terms with the resentment and frustration you’ve been harboring, mostly against yourself. When you allow these emotionally protective walls you’ve spent years constructing fall to the ground, you can begin to take steps toward self-awareness. And only then can the rebuilding begin. You become a cleansed, open wound, ready and willing for the healing to begin.

As you peruse your list, note that many of the items you record today may not be things you end up choosing once you’ve set out on your journey. You may find, once you’re on the road to recovery, the items listed are not of any great importance. Maybe they never were to begin with. You will have the opportunity to retool and reevaluate that list of yours many times on the road to wellness. You’ll actually get to choose what and how you do things, starting right now. Think of this step as a second chance, an opportunity to start over. You get to make decisions for once, not just follow Lupus' lead.

A fair warning, though: decisions can be hard to make. After all, wouldn’t we all like a scoop of vanilla and chocolate ice cream (in a waffle cone dipped in fudge with sprinkles, right?) Despite the fact that you will be forced to choose between things that you feel are equally as important, you’ll be the one calling the shots. You’ll no longer be at the mercy of Lupus, hoping and praying that she won’t strike up the band at the exact time that you need or want to be doing something somewhere. If you choose wisely, you’ll no longer find yourself stuck in bed on a Friday night against your will; you will have taken great care in preparing your body for that special night by going easy the few days before.

“To make Sunday satisfying, Saturday has got to slow down. To slow Saturday down, we have to control the weekdays. We have to force them to march slowly in a more stately manner.[1]

The choices you have will be endless, and certainly of more breadth and dimension than you have now. Think of the pride you’ll have in making good choices over poor ones. Another friend of mine was relating to me how her three-year old had started misbehaving a bit, doing the opposite of what she was asked to do. Desperate to find a way to effectively reprimand her daughter, she began appealling to the little girl’s sense of independence. They discussed the idea that the girl had the ability to make a good choice over a poor one every single day. Lo and behold, the little girl’s behavior immediately began to improve. Good choices inspire, heal and empower. They’ll change the way you look and feel, the way you view yourself and the world around you. You’ll be a changed person, a different person, a better person. You’ll feel good about who you are and what you can become, allowing you to be a better spouse, parent, child, co-worker, or peer.

QUOTE: [1] Paraphrased from How not to be a Messie, by Sandra Fulton

Friday, May 23, 2008

Lupus Genes Identified


Again, good news from the Alliance for Lupus Research (ALR)!

"The ALR-funded International SLE Genetics (SLEGEN) Consortium research project has identified multiple genes linked to women with lupus. These findings set the stage for more studies that will eventually lead to earlier diagnosis and new treatments for this debilitating illness."

Click here to read more about this exciting development!

Thursday, May 22, 2008

Honing my Decision-making skills

Everyday, I work at being healthy. These days, it comes a lot easier than it used to, but I still have decisions to make - decisions that can make or break my streak of health and wellness. I know that with each choice I make (be it to nap when I'm tired, sleep in when I've had a turbulent night of rest, or skip an outing when I know there's too much on my plate), I'm doing the right thing for me, for Bun, and for those around me. No one wants a cranky, sickly Sarita on their hands, I can guarantee you that!

Within the past couple of weeks, I've encountered a few scenarios where I had to take a step back and really contemplate my options. While the situations might seem inconsequential to you, for me, they were a true test of my will. In each case, I ended up making a responsible, healthy lifestyle choice, but it was tough not to revert back to my old way of pushing through life regardless of what my body was telling me to do. It's hard to listen to your body, but I've learned that I only suffer for it when I don't. Here are my two most recent examples in which I chose to keep my string of good health going - something worth celebrating!

Scenario #1: About two weeks ago, my mom called to tell me that her cardiologist had admitted her into the hospital due to some unsettling symptoms she was experiencing. The doctor had scheduled her for a heart catherization the following day, and although my dad was away on a week-long fishing trip (in a remote location where his cell phone rarely worked), she insisted that neither my sister nor I fly home for the procedure.

A little background before I continue: My mom had this same routine procedure done five years ago, which resulted in emergency, triple by-pass open heart surgery the same day. To say the least, we didn't take news of this catherization lightly.

After talking with my mom about the details of the procedure, I got off the phone and checked the clock. It wasn't even 4pm - plenty of time for me to catch a flight home later that evening. I was out running errands at the time, so I called Johnny, and he started working on flight arrangements from home while I called my sister to fill her in. Because she has a three-year old at home, she didn't have the luxury of just flying out quite so easily, so we decided that I would go first, and she would follow if necessary. In the meantime, she would try and get a hold of my dad any way she could.

When I arrived home, I was flustered - worried, tired, and unsure of what was in store for my mom. It was nap time, most importantly, and when I'm tired, I can hardly think straight. My eyes get blurry, I feel light-headed, and I find it hard to even put a sentence together. This is what Lupus fatigue is all about, and although I've known for years that I can't fight it, I thought in this instance, I might just have to. I wanted to get to my mom as soon as possible, and I was willing to do anything to make that happen.

But things weren't falling into place the way I wanted them to. First of all, Johnny was reluctant to even look into flights for that same evening. He ran down the list of my options for the following day, one of which would get me there early in the morning for a reasonable fare (although I might miss my mom's procedure.) I pumped him for my options to fly out the same day, thinking that I was going to pull a superwoman stunt and leave that night. In order to do that, though, I would have to pack within minutes, skip my nap, rush off to an airport an hour away, and barely make the flight. I would arrive after midnight, and would then rent a car or take a cab to a local hotel because visiting hours would be over at the hospital. If my mom's procedure was first thing the following morning (i.e. 7am), I'd be up again a few hours later, showered and ready to be by her side.

Those of you with Lupus can imagine the stress and fatigue this kind of situation would bring on...and I don't have to explain what a mess I would have been for a few days afterward. Even when controlled with medication, Lupus feeds on these kinds of situations. The more run down you are, the more vulnerable you are to the effects of the disease. I know this; I even explain it to other people. But when it comes down to it, I don't want to admit it to myself.

Johnny encouraged me to go lie down for a few minutes while I "decided" what to do. Truth was, he wouldn't have allowed me to fly out that night. He knew what I needed more than anything was a good nap, a relaxing dinner, plenty of time to pack, and a good night's rest before tackling the emotional day that was ahead. But because he knows that I'm smart enough and responsible enough (after years of practice) to make the right decision myself, he let me come to my own conclusion.

As I sat in bed, weighing my options, the reality of the situation became clear. If I dashed out that same night, I would have been of no help to my mom. I would have been too busy fighting fatigue, joint pain, maybe even fever and swelling to offer her the emotional support she needed. I would have been struggling to even make it through the day, and what good would that have done her? The point of my trip was to help her, not make matters worse. Having realized my best option, I asked Johnny to book the 8am flight the next morning. Within minutes, I was asleep, pleased with myself for doing the right thing.

Scenario #2: Just last weekend, my sister-in-law, Jen and I drove up to Philadelphia for a bridal shower for our sister-in-law-to-be, Meghan, on Saturday. We'd opted to make the three hour drive the day before, and I had been careful to schedule our driving time so that we would arrive in plenty of time for, you guessed it, my nap. We had a busy weekend ahead of us, and I didn't want to start out with too little sleep or run the risk of feeling crummy during the shower. This was Meghan's weekend - I didn't need to complicate things by having a mini-flare.

Two things happened: first, we hit traffic, and two, I hadn't allowed extra time to stop at the country club first to unload the party stuff from our car. That alone would take us an extra hour, and as I calculated the time, we wouldn't arrive at my other sister-in-law, Katie's house, where we were staying, until hours after my nap time. I was already starting to yawn, and we still had several hours ahead of us. I thought about just pushing through - it was important to get all the stuff unloaded from the car - and it sure would have been easier to just go with the plan in place. But in the back of my mind, I knew that wasn't the right thing to do. If I didn't get enough rest today and tonight, who knows what tomorrow (the shower day) would have been like. I owed it to my family to be there in good spirits, so I chose to make it happen.

I mentioned the problem to Jen who was driving, and we starting brainstorming. She insisted that she drop me off at the house to take a nap while she drove back across town to drop off the stuff. That extra step would take her an additional hour at least, and would take her away from spending time with Katie and our two nieces (who might not understand if she walked in the door just to turn around and leave again.) We thought about having my mother-in-law, Maureen, meet us at the country club where I would drop off Jen and take the car up to Katie's house to take a nap while they unloaded the stuff. While that would have worked, because Maureen could have then driven Jen up to Katie's, I was already tired and a little bleary-eyed, and didn't think it was safe for me to drive to Katie's house on my own. (I'm telling you - Lupus fatigue can be pretty scary stuff!) After throwing out option after option (and reconsidering a change in plans at all), we came up with a rock-solid idea. We would make an unexpected stop at my mother-in-law's house, which wasn't more than 10 minutes from the country club. I would take a nap at her house while she and Jen ran over to the club, unloaded the stuff, came back, and then we would drive up to Katie's after that. As it turned out, it worked perfectly! Maureen was more than willing to let us make a "pit" stop, Katie understood that we would be later than expected, and Jen made it possible to get me to my nap as quickly as possible. Had it not been for their understanding and helpful efforts, I wouldn't have been as willing to upset the original plan in place. In the end, I got a full nap (because it took Maureen and Jen longer than expected to unload), and we got up to Katie's rested, unloaded, and ready to visit. A perfect way to start a great weekend!

There you have it - two more examples of what I mean when I talk about choosing to live well with a chronic illness. It's not always easy, but it always pays off.

Wednesday, May 21, 2008

Three Cheers for the Lupus Drugs in Development!


The Alliance for Lupus Research, committed to supporting research targeted to new or improved treatments for Lupus, recently published a list of the drugs currently in development to treat the disease. The last time a drug was approved to treat Lupus, Dwight D. Eisenhower was president, so this new list provides hope to many who continue to suffer with Lupus.

Click here to see a detailed list of the dozen or so drugs, most of which were a direct result of ALR funding. And here's an update on Rituxan, another drug which has been in clinical trials. The following are excerpted comments from ALR'S Scientific Advisory Board Chair, Dr. Mary K. Crow:

"Patients, lupus investigators, and all of us at the ALR were disappointed to learn that Rituxan (rituximab) did not prove successful in Genentech's Phase II/III trial in SLE... A second trial of Rituxan in lupus nephritis is in progress, and we look forward to a more positive result in that study, and are optimistic for more positive news from other drug trials currently in progress."

Tuesday, May 20, 2008

DJ puts Baby Bun's wardrobe to the Test & Other Bun News


Here's Darwin trying out one of cousin Emma's outfits. Guess he was checking to see if it would fit Baby Bun in a few years. But, Darwin, what if Bun is a boy? Can you find something a little less...pink?!

In other Baby Bun news, I'm happy to report that my first "heart check" sonogram went swimmingly! As previously mentioned, because of a Lupus antibody (SS-A) I carry, the baby is at risk for congenital heart block. Monitoring the baby's growth via 2-week sonograms from about 16-28 weeks (or 32, depending on your doctor) can spot this development. Should it occur, I'll be treated with a dose of steroids which will ideally eliminate the problem. My doctors are very confident and do not seem overly concerned, so we're not worried either!

And another update...I was hoping that my insurance company would reverse its decision and choose to cover the cost of my daily anticoagulant injections (Lovenox), but to no avail. Because of the Lupus antiphospholipid antibody syndrome I carry, the injections are administered to help prevent clotting (which can lead to a miscarriage), and the cost of the injections is about $850/month. Because of the structure of my prescription benefit (with an annual maximum of $1500), Johnny and I are picking up the cost of the drug starting in month three (which is now.) While I appreciated my doctor's attempt to help me with the appeal to the insurance company, it wasn't enough to sway their decision. Johnny and I had prepared ourselves to cover the cost...so we'll just continue as planned. After all, as my sister-in-law reminded me, it's certainly for a good cause. It's money well spent - as is any dollar amount that ensures a safe and happy journey for Bun (who is rising quickly, I might add!)

Monday, May 19, 2008

Chronic Control: Managing my Disease


As mentioned in a previous post, here's an example of my handy-dandy Chronic Control spreadsheet. Across the top, you'll see the days of the month (1,2, 3... 29, 30, 31), and down the side is a list of my medications. Every once in awhile I add a line item for an antibiotic or an additional medication, but I've found this to be a fairly comprehensive list month to month.
When I was sick, I kept this chart religiously. Now that I'm on so few medications and my symptoms are so few and far between, I rarely use it. However, my chart was a real life-saver during my worst bouts of Lupus.
How I used the MEDICINE part:
Every day (usually twice a day - morning and night), I would record the medications I took. Many times I'd simply put a check mark, but if I took the medicine more than once a day (or if the dosage changed frequently, like prednisone), I'd write in the dosage and the time I took the medication.

This second chart is a continuation of the same spreadsheet, this time with my symptoms listed down the side.

How I used the SYMPTOM part:

In addition to marking my medications, I would record the symptoms I experienced on a daily basis. If I had joint pain in the morning, I'd put "AM" in the box rather than a check. If swelling in my hands cropped up around 3pm, I'd put in the actual time. That way, I could look back and see how my symptoms developed on a daily basis. There were days when almost every box was checked...and then it was easy for me to determine that my disease was flaring. You might think it would be simple to figure out whether or not you're sick one day to the next, but when you're dealing with so many symptoms and you're sick for such a long period of time, it can be difficult to remember how you felt on any particular day. Things tend to run together after a few weeks of constant pain!

Because I kept a record of my meds and symptoms on the same chart, it was easy for me to see the correlation between the two. In fact, because I saw so many connections, I created additional line items pertaining to my lifestyle, thinking that perhaps the the hours I worked or the amount of sleep I got at night would have an effect, too. You wouldn't believe the conclusions I was then able to make between the three categories!

For example, when I went down 5 mg on my prednisone, my glands would swell. When I worked a particularly long day, I had swelling in my hands, fingers, and elbows for the majority of the following day. When I switched anti-inflammatory drugs (from one that was administered twice a day to another that was only once a day), my pain returned everyday at about 5pm (about the time I would have normally taken a second dose of the old med.) In this particular example, my doctor and I concluded that one pill wasn't enough to get me through the day pain-free, so from then on, he only prescribed those that were to be taken in two-a-day doses. It was the same amount of medication in either case, but the two-a-days were just spread out so that when my pained returned late afternoon, I had another pill to take off the edge.
I also concluded that travelling was a big culprit in my disease flares. Almost every vacation we took would be followed with a trail of check marks: fever, swelling, chills, pain, etc. Johnny and I were able to realize the connection, and slowly ratcheted back on our travel schedule. I also discovered that when we came back on say, a Saturday, and I rested all day Sunday, I was able to start work on Monday with a lot less pain than if I didn't allow a day to recover. I also saw a pattern emerge with my short weekend trips to my parent's house or to my in-law's. These quick trips took a real toll - and I learned that extending the trip by an extra day or two really gave my body time to relax and recoup, on both ends of the trip.

These spreadsheets not only enabled me to make these connections, but allowed me to exert a little bit of control in my battle with Lupus. Before I started charting, I wasn't able to clearly communicate to my doctor nor to anyone else what I was actually feeling, how long a symptom had been going on, or when it was at its worst. I couldn't remember if I'd taken a pill in the morning or not, and was unable to determine if a medication was even working. Most days, I ended up feeling confused, sick, tired, terribly frustrated and very overwhelmed. Once I started keeping the chart, though, I felt like I had a handle on my symptoms, and better knowledge of my medications. The disease wasn't any less severe, but it was better managed. And once I learned to head the "advice" my spreadsheet had to offer, I really noticed a difference in my overall health and wellness.

Friday, May 16, 2008

Everybody's Blogging

I just discovered that the Lupus Foundation of America (LFA) has a blog, too! Check it out at http://lfa-inc.blogspot.com/ for the latest news in the world of Lupus. Titled "On the Road to a Cure", the blog will keep you updated on patient program offerings and breaking Lupus news. It's a great resource that shouldn't be missed. And be sure to check out the list of blogs that LFA recommends on the site - you'll see "Despite Lupus" right there, front and center!

Thursday, May 15, 2008

Listen Up, Doc!


In the beginning, I hated confronting my rheumatologist (Dr. R). I wasn’t afraid of him as much as I was the answers he had to give me. I worried about articulating all of the questions swirling around in my head, and feared the onslaught of tears that came so readily during those first few months.

About six months after I started seeing him, I felt that I had hit a plateau. I was still very sick and didn’t seem to be making much progress. My family prompted me to seek a second opinion, but I had to tell Dr. R first so that my charts could be released. It may sound like a straightforward, uncomplicated thing to do, but I was terrified. I had to tell the one person who had been my greatest advocate that after all he’d done to help me, I didn’t think it was enough. I felt like a traitor, and didn’t think I was strong enough (mentally or physically) to go through with it.

When I finally broached the subject with him, he responded professionally and amicably, much to my relief. I explained how I thought it might be a good idea for me to see another reputable Lupus doctor my family had read up on. He immediately thought it was a good idea that ‘we’ get a second opinion, instantly sharing the burden and making it seem as though it was necessary to do so. In fact, he was so agreeable that he suggested that instead of seeking the help of the physician I’d suggested who, he thought, roughly had the same qualifications that he did, we should set up an appointment at the National Institutes of Health with a specialist in the field. It seemed he wanted answers just as badly as I did, making me realize that had I never questioned the progress we were making, he might never have seen fit to suggest another alternative.

He promptly prepared the necessary documentation and made the appropriate phone calls, and within days I was at NIH, where I underwent a thorough series of tests and examinations. The doctor I saw at NIH followed up with me several times over a period of two months, concluding that my care under Dr. R thus far had been customary, appropriate, and more than sufficient. It seemed Dr. R was doing everything right; Lupus just wasn't responding.

I returned to Dr. R’s permanent care, confident now that he was doing all he could, but worried that I had offended him with my insistence to see someone else. I thought my betrayal might have tarnished our doctor-patient relationship, but to the contrary, it seemed to have strengthened it. He now saw me as a patient who meant business: someone who was straightforward and honest, self-assured and independent. I was a patient who wanted to take responsibility for my health, not just accept his advice and guidance without dispute.

The greatest change didn’t come from him, though; it came from me. After I witnessed his response to and the results of my polite, yet firm confrontation, I began to see myself in a whole new light. I proved that I could be forthright, confident, and definitive, even in a subject where my counterpart had the advantage. It was the first time I had taken the future of my health in my own hands, and it felt good. I had renewed my self-respect while earning my doctor’s, helping our doctor-patient relationship to thrive.

Since then, I’ve exhibited my assertiveness time and again with my doctor, realizing now that he expects nothing less from me. There have been times when he’s seemed distracted or impatient, dismissing a symptom I’m concerned about or glossing over an issue too quickly. I take a moment to realize that he, too, is entitled to be a little “assertive”, and that I’m just as responsible for keeping the relationship afloat as he is. I try rephrasing the question or readdressing the issue in another manner or at a more appropriate time. Note that I never sacrifice my expectations; I just learn to compromise on my approach in order to get what I need. Assertiveness isn’t about brawn or brute force; instead it’s about diplomatically displaying a self-confidence that cannot be ignored. In my opinion, it works every time.

Over the course of the next few weeks, I'll share some of my "Listen Up, Doc" tricks that are mentioned in my book, "Despite Lupus". A productive and beneficial doctor-patient relationship has done wonders for me; hopefully, it can do the same for you.

Tuesday, May 13, 2008

Namesakes Made Known!

So here they are...the results you've been waiting for...the answers to last week's Namesake Trivia Poll.

For those of you just tuning in, my sister, sister-in-law, and I are all due with babies within weeks of each other this coming fall. Two of the three of us are planning on passing on either our names or the names of our spouses to our babies-to-be. Only two names are being passed on, but which two are they? Here are the choices:

Sara, John, Kathryn, Kevin, Jennifer, Patrick

Just to keep you guessing, I'll provide three additional clues to narrow down your choices.
1) The two names each have shortened nicknames, which will most likely be used for the babies to be.
2) The two individuals passing on their names are both of Irish descent.
3) And the third clue...Despite Lupus' version of Jeopardy's Video Daily Double:











The first visual clue is an easy one: Shamrocks = St. "Patrick's" Day = Patrick. That's right! "Patrick" is one of the names being passed on (as long as my sister-in-law, Jen, has a boy!)

The other one takes a little guess work, but here at Despite Lupus, Inc., we don't like to make things too obvious: Sylvester the Cat = Sylvester = Johnny's First Name (He's officially Sylvester John Gorman V). Tricky, huh! If Bun is a boy, he'll be the sixth...but his nickname is up for grabs. We're leaning towards "Syl", but this Mom isn't convinced. Would "Johnny" be better? What say my readers?

As always, thanks for playing!

Monday, May 12, 2008

Vitamin D Benefits and AutoImmune


Here's an interesting article from the Washington Post, discussing the benefits of Vitamin D and autoimmune diseases. Check it out! (And thanks, Leslie, for sending me the article.)

Research suggests vitamin D has key health benefits
By Sally Squires, The Washington Post

Imagine a nutrient that could help prevent cancer, heart disease and tuberculosis, preserve bones and thwart autoimmune diseases such as multiple sclerosis, rheumatoid arthritis and juvenile diabetes. Too good to be true?

But that’s the potential promise for vitamin D, a nutrient whose usefulness was once thought to be limited to prevention of rickets in children and severe bone loss in adults. Known as the “sunshine” vitamin because it is naturally produced when the skin is exposed to ultraviolet light, vitamin D has been garnering increasing attention recently. “There’s a drumbeat about vitamin D that is being played very loudly,” says Mary Frances Picciano of the Office of Dietary Supplements at the National Institutes of Health. Just this month, the American Journal of Clinical Nutrition published a special supplement highlighting widespread vitamin D deficiencies “in various populations throughout the world, including ‘healthy’ people in developed countries where it was thought that (the) deficiency was obsolete.”

The National Cancer Institute and the federal Office of Dietary Supplements have both convened scientists to review vitamin D data this past year. And last fall, the federal Agency for Healthcare Research and Quality issued a review of vitamin D that found it essential for bone health at all ages. “There are a lot of benefits to vitamin D that have surfaced in the last 20 years,” notes Hector DeLuca, a University of Wisconsin biochemist who has been a pioneer in vitamin D research.

Among the more intriguing findings is a recent review of 18 studies involving nearly 60,000 people that showed those who took vitamin D supplements had a 7 percent reduction in mortality compared with those who didn’t take the vitamin. Another recent study found that lung cancer patients who either got a lot of sun or had a high intake of vitamin D had three times the survival rate of their counterparts with lower vitamin D levels.
Despite these encouraging results, scientists are also quick to note that much of the vitamin D research is limited to animals — not people. “We still don’t have all the information to go to the next step,” Picciano says.

In the meantime, an increasing number of physicians use a simple blood test to check vitamin D levels in patients. Testing runs about $100. Experts believe that 25 to 40 nanograms per milliliter is a reasonable target for vitamin D blood levels. But, DeLuca says, population studies suggest “that if you can get to 60 to 70 nanograms per milliliter that maybe you can address some other health problems.” Rates of colon cancer, for example, are about 50 percent lower in sunny parts of the world and in regions such as Norway where there’s a high consumption of fatty fish, which are rich in vitamin D. Just 3½ ounces of salmon provides 90 percent of the daily value of vitamin D for most adults. Sardines, tuna, eggs and liver also are rich in the vitamin, as are fortified milk and margarine.

Another option is take a dietary supplement. Based on the recent vitamin D research, DeLuca began taking 1,000 international units of vitamin D daily. He also consumes a diet that includes some vitamin D-fortified foods. He estimates that his total daily intake hovers around 2,000 IU daily — the level that the National Academy of Sciences sets as the tolerable upper-limit intake for adults. (Adequate daily intakes are 200 IU for those 19 to 50 years old; 400 IU for adults 51 to 70; and 600 IU for those 71 or older.) Too much vitamin D can be toxic. “I am only confident to go to about 2,000 or 3,000 IU per day,” DeLuca says.

DeLuca, dermatologists and scientists say that because of increased skin cancer risk from exposure to the sun, it’s best to get vitamin D “from fortified foods and capsules.” If you prefer the sun, however, just 20 minutes of exposure without sunscreen enables the skin to produce about 20,000 IU of vitamin D — equivalent to drinking about 400 glasses of milk.
Contrary to taking mega doses of dietary supplements, sun exposure does not appear to cause vitamin D toxicity.
***
Some other good sources of Vitamin D: Salmon, Tuna, some Orange juices, and Fortified Cereals (see specific packaging for details). And for more information on Vitamin D, click here.

Thursday, May 8, 2008

Prescriptions 101: CellCept

In an earlier post, I promised to share details of a few of the prescription drugs I've taken for Lupus over the years. In each drug posting, I'll relate my experience with one particular drug, the dosages I took, the side-effects I experienced, and my opinion of its effectiveness. As you know, body chemistry can differ greatly from one person to another, so a drug that works (or didn't work) for me might have an entirely different effect on you. Keep in mind these reviews are written from the perspective of a patient, and should not be considered as medical advice or instruction. The information provided should be used as reference only, or perhaps as a talking point in your next doctor's appointment.


The first drug up in the series - CellCept (generic name: mycophenolate mofetil);
My Rating: A big thumbs up!



I will admit, I'm biased when it comes to CellCept. I consider it one of the wonder drugs in the Lupus community. Within two months of starting the drug, my chronic joint pain began to subside (for good!), I was less fatigued, I had no incidence of angiodema (swelling), and my inflamed, sore throat and glands went away. Within months, my serology (blood tests) indicated that my disease was clinically quiescent (under control), and for once, my physical symptoms indicated the same. I suffered exactly ZERO side-effects from the drug, which was a new experience for me. Many of the other drugs prescribed for Lupus have known, serious side-effects, some of which are more troublesome than the symptoms of the disease itself.

Because CellCept is an immunosuppresant (originally designed to prevent the body from rejecting a kidney, liver, or heart following an organ transplant), my doctor prescribed an antibiotic (Bactrim) at the same time to ensure that my body was protected against infection. I was also on Prednisone for the first year and a half I was on CellCept, but the steroid was reduced to a low maintenance dose of 5 milligrams a day. Eventually, my doctor and I opted to try CellCept on its own, and I had no flare-up once I stopped Prednisone entirely.

Here are the finer points of CellCept:

Dosage: I started out taking 1000mg a day, and eventually ramped up to 2000mg a day (or 2 grams). Even with the increase in medication, I experienced no side-effects at all.

Known side-effects:
Again - I didn't have any of these -

*fever, chills, body aches, flu symptoms;
*easy bruising or bleeding, unusual weakness;
*coughing up blood or vomit that looks like coffee grounds;
*bloody, black, or tarry stools;
*painful or difficult urination;
*chest pain;
*feeling like you might pass out.

Less serious side effects may include:
*nausea, vomiting, stomach pain, diarrhea, or constipation;
*headache, mild weakness;
*swelling in your hands or feet;
*numbness or tingly feeling;
*anxiety, sleep problems (insomnia).

Increase risk of infection; Increased risk of lymphoma (I know - this last one is a biggie...but statistics (and my doctor) led me to believe that this risk was targeted more toward transplant patients than little ole' me.)

Administering: Finding time to take this drug is tricky - you have to take it 1 hour before you eat, or 2 hours after you eat. For awhile, I was taking it three times a day, and found it impossible to figure out when I could eat, when I couldn't, and when to take the pills. I had about a 15 minute window in the morning, afternoon, and evening - and if I missed it, my mealtimes got all screwy. And forget about a late night snack! Soon after I started the drug, I asked my doctor if we could switch to only twice a day, and things got a lot easier to manage. Now that I've switched to another medication that has no time restrictions, though, I admit I'm loving the flexibility!

Cost: Expensive. For the 2 gram dosage I was taking, a monthly prescription retailed for over $800/month. Thankfully, my insurance at the time covered it completely (aside from a $40 monthly copay). I was able to reduce that copay to $20/month by mail-ordering my prescription in a 3-month supply, saving me more than $200 a year. The insurance I currently have covers the drug, but because of my prescription drug annual maximum, they'll only cover two months of a year's worth of medication. I'm not currently taking CellCept, so I figure I'll cross this financial bridge when I come to it.

Limitations: You cannot be pregnant when taking CellCept. This was a big stumbling block for me, but I realized that because the medication I was taking in lieu of CellCept wasn't controlling my disease, I wasn't healthy enough to get pregnant anyway. I opted to start CellCept, in hopes that down the road, it would help get my disease under control for good, allowing me to then switch back to another less potent drug that would be safe for pregnancy. And that's exactly what happened. After three very successful years on CellCept, with practically no disease flare-ups, I switched to Plaquenil (which is pregnancy-safe), waited three full months to make sure CellCept was out of my system, and then got the okay to start trying to have a baby. You know the rest of the story... and yes, Baby Bun will have a shrine to CellCept in his/her room.

I've heard more success stories than not with CellCept, although one of my friends in Lupus group did not have much luck with the drug. Her primary symptom was peripheral neuropathy at the time, and CellCept didn't seem to do much to help that. Thankfully, though, she was able to find another combination of drugs that has helped her pain subside.

That's it for CellCept. Next up: Prednisone!

Tuesday, May 6, 2008

Insurance - A Full Time Job


Although I don't draw a salary, get paid overtime, or accrue sick days, I feel like I have a full-time job on my hands. Managing my insurance takes time, organization, follow-up, memo-writing, scrutiny, and energy - sounds like I've found myself a job, don't you think?

It always amazes me how closely I have to check my explanation of benefits (EOB) to ensure that what is supposed to be covered is being covered. I've written somewhere in the neighborhood of a dozen appeal memos/letters in the last few years alone (and I'm not typically a "letter writer"), and that doesn't include all of the time spent on the phone or via email hashing out why this test wasn't covered, but that one was.

Thankfully, most of my appeals have had happy endings, and for that, I know that I'm getting my job done. I know my husband would give me an A+ performance review for the money I've saved persistently following up with the insurance company when they are in the wrong.

It's been to my advantage that my Lupus testing/prescriptions/etc follow somewhat of a pattern. For instance, every eight weeks (if not more often), my rheumatologist calls for the same blood/urinalysis tests, all of which are monitoring the activity of my disease. Each round of tests costs me somewhere between $25-$75, depending on where I am in my deductible payment. So when bills arrive in the mail from the laboratory in the $300-$400 range, I know something's up. Even a $100 bill is cause for alarm.

Just last year, I saved over $900 by double-checking the bills that arrived. You may think that there's no way I could have missed an over billing of $1000. But when the errant billings are spread out over 12 months, buried in dozens and dozens of insurance claims, it takes a little sleuthing (and patience) to make sure that each bill is correct.

Here's a list of my top five reasons that the insurance company mistakenly overbills me:

1) Someone in data entry types in the wrong code for the test I had done: This one is usually an easy fix. Many times the customer service representative can make the change right there on the phone (because they can see the obvious mistake), or a letter from me (along with doctor's notes from my appointment) can clarify the issue.

2) My doctor needs to further explain the test/appointment/procedure I had done: This has happened to me several times, and usually a call to my doctor (who then contacts the insurance company) does the trick. Just 2 months ago, I received a bill for $155 (for a first-time test at my dermatologist's office), and had I not been on my guard, I probably would have just paid it. Instead, I put on my negotiating hat, called up the insurance company, and found out that they just needed further clarification from the doctor's office as to what was done. Once that transpired, I owed a whopping $12.50. (Maybe it's time to ask for a raise!)

3) Change in insurance policy of which I was unaware: This one can be tricky, but if the insurance company fails to alert its members of a change to its preferred providers, for example, how are we to adjust? Here's a snippet of a letter I wrote appealing an issue of this sort:

To ensure efficient and cost-effective processing, I understand that it is now necessary to request that my doctor send my specimens to a Lab One facility until further notice, rather than the Quest facility that he currently uses for my laboratory services. I am happy to comply with the new requirement and understand that coverage changes do occur. However, that critical change in coverage was not provided or communicated to me, nor to the rest of your membership, prior to the administration of these tests. Had I been alerted that a change had taken place and informed of the steps necessary to have my tests processed as they have been in the past, I surely would have done so...The merger between the two companies (which caused the change in policy) clearly has its benefits, but it is imperative that you inform your members regarding such changes prior to putting them into effect. Otherwise, you are doing the patients you cover a grave disservice. In fact, you are severely handicapping them. I’m sure you’ll agree that is unacceptable.

And they did!

4) Wrong classification of a test, medication, or procedure: Many times, there is a misunderstanding as to the purpose of the test/med/procedure, and explaining the end result of a test or the usage of a medication can clear up the issue. For instance, maybe the insurance company doesn't typically cover test X, but because I have Lupus, and it's considered a "medical necessity", the test is a covered benefit. Usually, I've been able to talk through these issues myself, but it may be necessary to involve your doctor's office.

5) Patient Misinformation: Someone billed the wrong patient, the wrong insurance company, or the wrong ID number. This one, while is the easiest to solve, can be the easiest to miss. With all of those EOB's coming in, the bill may look very normal and customary, until you look up at the one line "patient id number" and it's not yours!

Take it from me, it pays to do your job well. I'd say the trip Johnny and I took to Nova Scotia last year was paid for in part due to my hard work and diligence. Maybe I DO get paid for vacation time!

Monday, May 5, 2008

The Perils of Prescribed Pill Popping


Check out the highlights from a recent article from Medscape Rheumatology, discussing patient adherence to prescription medications. Taking your meds when and how you're supposed to can be tricky. I even created an excel spreadsheet so that I could track all of my prescriptions. When you're pill popping as much as Lupites have to sometimes, it's impossible to remember what you're taking or when, without writing it down. In the next few days, check back for a sample of my drug journal, fondly referred to as my "Chronic Control" spreadsheet!

Here are the article highlights:

People who are prescribed self-administered medications typically take less than half the prescribed doses. (Can you believe that?!) Many reasons exist for nonadherence to medical regimens. They include problems with the regimen (such as adverse effects), poor instructions, poor provider-patient relationship, poor memory, patients' disagreement with the need for treatment, or patients' inability to pay. Efforts to assist patients with adherence to medications might improve the benefits of prescribed medications but also might increase their adverse effects. In this current review of trials of ways to help people follow prescriptions, updated from the 2005 version, 21 new studies were reviewed.

The aim of this study was to update a review summarizing the results of RCTs (randomized controlled trials) of interventions to help patients follow prescriptions for medications for medical problems, including mental disorders but not addictions.

Study Highlights
Articles were selected if they reported an unconfounded RCT of an intervention to improve adherence with prescribed medications, measuring both medication adherence and treatment outcome, with at least 80% of follow-up of each group studied and, for long-term treatments, at least 6 months' follow-up for studies with positive initial findings.

The studies differed widely according to medical condition, patient population, intervention, measures of adherence, and clinical outcomes; therefore, a qualitative analysis was performed.

For long-term treatments, 36 of 81 interventions reported in 69 RCTs were associated with improvements in adherence, but only 25 interventions led to improvement in at least 1 treatment outcome.

Almost all of the interventions that were effective for long-term care were complex, including combinations of more convenient care, information, reminders, self-monitoring, reinforcement, counseling, family therapy, psychological therapy, crisis intervention, manual telephone follow-up, and supportive care. This implied that more frequent interaction with patients with attention to adherence may be needed.
Even the most effective interventions did not lead to large improvements in adherence and treatment outcomes.

What's this all mean? It's up to you to make sure you take your meds when and how you're supposed to. The drugs designed to make you feel better aren't going to do you any good if you don't take them, take them too close together (or too far apart), or combine them with other substances that counteract their effects. Follow your doctor's orders to a "T", read the information packet that comes with your prescriptions, and you'll be that much closer to finding a drug combo that works for you.

Friday, May 2, 2008

Cousins for Baby Bun!

Baby Bun has big news to share! Let's take it one highlight at a time:

First up, my niece Emma is going to be a big sister! I'm proud to say that I'll be a Mom and an Aunt (for the fourth time) within a span of about a week. My sister, Katie, and I are due a mere 7 days apart. My parents are beside themselves with excitement, and I know they'll have their hands full this fall. Just glad I'm due first!

Although Katie and her husband, Kevin, have come up with an affectionate term for their Baby on the Way now, there was a long period of time when the bump was nameless. I thought something like Baby Baguette, Baby Sesame, or Baby Biscuit would be fitting, while Johnny was angling for something more like Baby Jewish Rye. Thankfully, Emma recently settled the dispute and came up with "Baby Bunny" (although her first attempt was "Baby Babba"...which we disqualified because it sounded too much like Baby Bubba.) Baby Bunny and Baby Bun will be the best of friends, I just know it!

And next up, and equally as exciting, my sister-in-law Jen is expecting her first baby less than two weeks after Katie!! Jen and her husband Pat (Johnny's brother) are very excited, and Pat's shaking in his boots because he might have to share his birthday cake with Gorman Junior this year. That's right - Jen's due date is November 14th, Patrick's birthday! I'm just glad that I'll have someone to trade moomoo's with this summer at the Gorman beach house. Our mother-in-law sent out the sweetest email this past New Year's, declaring that this was the year for big things to happen in the family. I guess she was right! (Not only does she have two grand kids on the way, but her youngest son Tubby is getting married to a wonderful girl named Meghan. Talk about exciting!)

Our nieces Molly and Mary Kate are super excited, as well. The prospect of having two new Gorman cousins around for Christmas this year is pretty cool...and Molly's even submitted a list of about 25 girl names for Baby Bun's review. Her perfectly composed letter to Baby Bun will definitely be framed!

With all of this excitement, it's time f0r another poll question. Try your hand at some Gorman/Rice trivia, and be sure to check back next week for the answer.

Here's the $64,000 question:

Two of the six parental names will be passed on to the babies on the way, as long as the genders match up appropriately. Which two are they? Sara, John, Kathryn, Kevin, Jennifer, or Patrick? Check the poll at the bottom of the site to cast your vote - and don't forget to vote for two!

Thursday, May 1, 2008

Baby Bun Preparation


Darwin has taken it upon himself to be the official tester for any purchases we make for Baby Bun. His objective? To make sure all products are safe, adequate, and appropriate for his little brother or sister. Here he is, sampling his cousin Emma's stroller, checking to see if this would be a good color and/or style for B.B.
Yup, he says, I think this one will do!