Friday, August 29, 2008

Adjustment Issues

Henry the pug has officially had his first adjustment issue. It didn't even pertain directly to Bun, but I'm sure if you asked him, he would tell you that it did. As an older sibling who is in turmoil over the fact that a new baby is arriving soon, to him, everything from here on in must be Bun's fault.

Two nights ago, we sold the overstuffed green chenille couch we've had for over 10 years (Johnny actually bought it before we were married) on craigslist. The day our buyers were coming to retrieve the couch, Johnny vacuumed, fluffed and spruced it up so that the nice new owners would not be taking part of Henry and Darwin with them when they left. (Pug hair and chenille = bad combination.)

As such, Henry and Darwin were not allowed to go into our family room for the better part of a day. We let them pay their final respects (there was much nuzzling as they had come to love the comfy green wonder), but then they were ousted from the room. You would have thought we had taken away a pacifier from a baby the way Henry was whining outside of the family room door. He was there for easily 25 minutes, smashed little pug face staring directly into the door, trying to will it open as he whined for his security couch inside. We finally pulled him away and distracted him with, you guessed it, food. He did a little more whining that evening, but thankfully, he was able to sleep through the night. (Apparently, even pugs have their limits for disrupting a good night's sleep.) The next morning, though, he seemed lost again.

Here are the boys, posing sans sofa.


Interestingly, they're sitting in the exact same spots they did when the couch was there.

However, since the new couch has arrived, Henry has refused to go near it. Here's a close up of the embittered pug. He looks a little miffed, doesn't he? Wonder what face he's going to make when Bun tries to pull that cute, curly little tail of his?


His brother, on the other hand, is a perfect gentleman, willingly adapting to his surroundings and to Bun's imminent arrival. I mean...look at this face. What's not to love?

Thursday, August 28, 2008

Hope for the Best, Plan for (almost) the Worst


What a bummer! My blogger friend over at Lupus Pie was in a flare this past month. She hasn't posted a blog entry for a little over a month and half, and I don't blame her. If I was flaring, my fingers wouldn't want any part of this keyboard action, either.

It's a good reminder, I suppose, that although I'm doing everything I can to keep myself well and flare-less, the disease does have a mind of its own. I don't really know what to expect after I give birth. I know that the trauma, drop in hormones, fatigue, stress, or any other number of issues can bring on a flare, and while I'm hopeful it won't happen, I'm trying to set myself up just in case it does.

I'm working on hiring someone to come in 4 hours a day/5 days a week so that I can get a little rest each afternoon. And currently, this same nanny candidate is willing to add 4 more hours in the morning if need be. Johnny's armed and ready to help out in the mornings as it is, and my mom is coming to help for a week or so once Bun arrives. My in-laws will do their part, too, I'm sure. After all, who won't want to spend quality time with Mr. or Miss Bunito?

But - I'm fully aware that "quality time" will most likely NOT be between the hours of 11pm and 7am...so I'm all over the night shift. And you know what? If I flare...I flare. I can't do anything more about it today than I already have. I know there are people we can hire and things we can do to get through, if the need arises. But I think it would be a waste of the last few weeks of a great pregnancy to start fretting about what life will be like if (and only if) I get sick.

I'm not in denial; I'm not being overly optimistic. I'm just taking one day at a time. And you know what? It feels great!

Wednesday, August 27, 2008

Feeling creative, anyone?

Anyone have any good ideas for the cover of my book, Despite Lupus: How to Live Well with a Chronic Illness? Now that my manuscript is in the hands of my editor extraordinaire (thanks, SFB!), it's time to start thinking about artwork for the cover.

What comes to mind when you think of Despite Lupus? I welcome any and all thoughts - but should warn you that I'm not much of a butterfly/rainbow/teddy bear kind of a person. Other than that, I'm open!

For a refresher on what Despite Lupus is all about, check out my previous posts labeled "book". There, you can find a smattering of excerpts from various chapters.

Thanks for the help and I look forward to your comments!

Tuesday, August 26, 2008

Hitting the gym, chronic illness style

As featured in a recent article in the New York Times, check out this great concept for chemotherapy patients who want to get a little exercise, but shouldn't push too hard.

In doing a quick search online, I found several other gym classes geared toward chronic illnesses, including Arthritis, Parkinson's, and Diabetes around the country. No sign of Lupus classes yet, but hopefully, they're coming soon!

In the meantime, click here to check out another great article about how to pick the right gym for you.

***

Said the Doctor to the Cancer Patient: Hit the Gym

New York Times, Fitness and Nutrition, August 13th, 2008, by Anahad O'Connor.

As the group of women trickled into the aerobics studio at the Bendheim Integrative Medicine Center in Manhattan on a recent Thursday morning, there were subtle signs that this was no ordinary fitness class. One woman told the instructor that she had missed a string of previous classes because she was grappling with fatigue, a side effect of her new cancer medication. Others wore colorful wraps on their arms, containment sleeves meant to protect against lymphedema, a painful swelling of the arm stemming from breast cancer surgery.

Sponsored by Memorial Sloan-Kettering Cancer Center, this class for cancer patients has been around for some time, mostly in a league by itself. But in recent years, following studies that found exercise to be beneficial in combating the effects of cancer, the class has gained some company.

Gyms and fitness centers have begun stepping in to meet a small but growing demand for programs designed to not only hasten recovery but to address the fatigue of chemotherapy, the swelling of lymphedema and the loss of muscle tone.

There have always been athletically inclined patients who stayed active, even competitive, in the wake of a diagnosis. A recent high-profile example is Eric Shanteau, an American Olympic swimmer who decided to put off testicular-cancer surgery until he had competed in Beijing.

But most of the roughly 10 million cancer survivors in the United States are not amateur Lance Armstrongs. Many, though, are inspired by celebrities like Mr. Armstrong, seeing them as models for how to come out on the other side of often-debilitating treatment regimens.

A new program from the Y.M.C.A., in partnership with the Lance Armstrong Foundation, offers cancer fitness classes at more than a dozen Y’s in 10 states. At the women’s gym Curves International, researchers from Fox Chase Cancer Center in Philadelphia are looking at whether overweight breast-cancer patients can keep to a five-day-a-week Curves routine for six months. And survivors are organizing their own classes.

“There used to be this understanding that if you’re getting treatment you’re supposed to be in your bed,” said Pam Whitehead, an architect and survivor of uterine cancer who started the Triumph Fitness Program at gyms in Modesto and West Sacramento, Calif.

In some cases, oncologists are prescribing exercise, gently prodding patients to tackle whatever activity they can manage: light walking, simple stretches, exercise with resistance bands.

“I started in 1992 and that was really a time when not as many patients were exercising,” said Dr. Alexandra Heerdt, a breast surgeon at Sloan-Kettering who is conducting a pilot program involving exercise. “If a patient came to me back then and asked about exercise, I would have said there wasn’t really any information.”

But now, she added, “they have a lot of options.”

Wendy Rahn, 46, an associate professor of political science at the University of Minnesota, knows this well. After a double mastectomy, her shoulders hurt so much that she was often hunched in pain. Then, while researching her illness, she discovered a 2005 study on cancer and exercise.

“The effects — what we call effect sizes in statistical research — were enormous,” she said, “and I was like ‘How come no one is talking about this?’ ” She had given up exercise a decade earlier, but the study inspired her to go back to the gym.

“I started feeling so much better,” she said. “And it struck me that if I’m feeling this good, then every cancer survivor should.”

So she founded a nonprofit group called Survivors’ Training, and in January opened a fitness studio in White Bear Lake, Minn., offering yoga, strength training, Pilates and Nia, which combines dance and martial arts. “I like to think of it as a support group that moves,” she said.

Check out the entire NY Times article here.

Friday, August 22, 2008

New Lupus Lesson Posted!

Be sure to check it out at the side of the blog!

A Great way to start the Weekend

A blogger friend of mine (friend first, blogger second!) posted this story earlier in the week, and it is definitely worth sharing. Enjoy and have a great weekend! 

****Blog post from Portland Sunshine******

It is a cold and rainy Monday morning. The chill and dampness feels good after the 100+ weather we experienced last week/weekend. I bundled up the baby boy and myself and we went out to do some errands. I decided to treat myself to a chai latte, and decided to hit the drivethru Starbucks due to the rain and the fact that baby was cozy and sleeping in the backseat.

As I was waiting in line, I decided I'd pay for the person behind me as well as for myself, just to be nice on a rainy Monday morning. I have never done that before. I have never had it done for me.

So I get up there, feeling kind and good about my decision to buy the lady behind me her latte (or whatever she had ordered).

You will not believe what happened next. The lady working the drivethru told me that the lady in front of me had paid for my chai. WHAT?!?! How bizarre! Not only that, but she said that this had been happening all morning. A lady started it when they opened at 6am, and each person after her had been paying for the person behind them. Obviously I kept the kindness going and paid for the lady behind me.

I love when stuff like this happens.

*****

Be sure to stop by her blog sometime. It's great!!

Thursday, August 21, 2008

Cutest Baby Ever!

Do I really need to say anything else? 

Here's Baby Bun at 31 weeks and 1 day, looking adorable.

Won't Bun always look this serene? I don't think this baby even knows how to cry (or scream, wail, or fuss.) Time will tell, though, won't it? 


A research team at Purdue University led by Dr. Jeong-Nam Kim 
(http://www.cla.purdue.edu/communication/people/jnkim.shtml), is looking for participants to take part in a quick, online survey. Specifically, their research explores how information sharing behavior through online communities (such as blogs and discussion groups) influences coping strategies among people with chronic conditions including cancer, diabetes, depression, lupus, etc. 

Check out the survey posted on the right side of my blog. Simply click on the clipboard in the top right-hand corner of the site. I've taken the survey myself, and it doesn't take but a couple of minutes. If you can spare a few, check it out!

Wednesday, August 20, 2008

To the Birthday Girl...


My family is full of August birthdays, and today is another one! 

Best wishes to my sister who turns #$@! today! She's not that old, and she looks about 10 years younger than she is. But since it's her birthday, I won't broadcast her age. Today of all days, she deserves a break!

Happy Birthday, Katie!

Tuesday, August 19, 2008

Quack, quack, quack!


After months of trying to perfect it, I can finally say I have it down pat. That's right, folks. I can officially do the pregnancy waddle.

I didn't know if I'd ever master the wobbling walk. Not that my belly isn't big enough to warrant it. I just didn't see how, when or why I'd have a chance to work on it. Now...I fully understand. Going into my 32nd week of pregnancy, I know exactly why pregnant women waddle.

I personally don't know that it has as much to do with the weight gain as it does the pressure that is put directly onto one's lower half - bladder, bowels, the whole enchilada. I thought I had the urge to tinkle frequently at 20 weeks, but now I know those weren't real urges. Those were merely inclinations.

I'm not only a waddler, I'm an ambling waddler. I take my own sweet time getting anywhere and everywhere. It's just impossible to walk quickly - and you're looking at the Greencastle Middle School 8th grade speed walking champion here. (Eat my dust, Misty Gibson!)

Johnny remarked recently that I haven't walked this slowly since my days as a true Lupite. Man, I used to walk slowly when I was sick. Back then, my ambling ways were caused by fatigue, aching and stiff joints, lack of energy, and an all-over fluishness that left me practically unable to put one foot in front of the other.

Come to think of it, I'll take my prego waddle over that any day of the week. Plus, I only have 6 1/2 weeks to go. These finite, these-too-shall-pass kinds of scenarios are great - such a change from the never-ending Lupus ordeals of yesteryear. Who knew pregnancy could be such a refreshing experience? (I'm joking, I'm joking.)

Monday, August 18, 2008

Aug 27th : Lupus Fundraiser at lucy

A local fundraising opportunity tied to a shopping trip? What could be better!

lucy, an apparel store in Fairfax Corner, is sponsoring a fundraiser at the end of August for the Lupus Foundation of America Greater Washington chapter. Don't miss out on your chance to save big and donate at the same time! lucy carries active wear for women, and is a nationwide chain.

On Wednesday, August 27 from 10 a.m. to 9 p.m., lucy will offer 20% off to anyone who mentions the Lupus Foundation, and LFAGW will receive 10% of the total proceeds of those sales. This is a great opportunity for the chapter, and if successful, there is already a possibility that lucy will run the promotion again later in the year!

Check out Lucy's website to see their selection, and if you're in the area, be sure to stop by and pick up a little something for yourself. It's definitely for a good cause!

Friday, August 15, 2008

Photo Sensitivity Poll - How do we stack up?

The results are in! Thanks to everyone who participated in the latest sun sensitivity poll.

When asked the question, "Do you have photo sensitivity, and if so, how are you affected?", here's how you responded:

61% of those who voted said they experienced a general feeling of malaise from sun exposure.
38% said they suffered a rash or other skin irritation when exposed.
15% reported that they went into an all-out flare when exposed.

Interesting split, huh? Guess it's back to the umbrellas we go!

Thursday, August 14, 2008

Happy Birthday to you...

Happy Birthday to you, Happy Birthday dear Dad, Happy Birthday to you!

"PawPaw' turns 68 today (which according to my niece, "is a lot of numbers!") Keep the birthday boy in your thoughts - here's hoping you catch the big one on your big day, Dad!

Wednesday, August 13, 2008

Eating the Easy Way

Elaborating on one of the suggestions mentioned in the Lightening your Load ticker at the side of my blog, here's another way for you to make life easier on yourself, particularly when you're feeling crummy, achy, or just down right exhausted:

Sign up for a prepared-meal service, like Let's Dish or Dinner Done, two companies that friends across the country swear by. Here's how most of the companies work:

You can assemble the meals yourself at an in-store session (spending about 2 hours customizing the meals yourself - which I've been told is pretty fun when you take along a friend), or have the meals pre-assembled for you. You can also place an order online, pop in at the last-minute to select a ready-made meal or two at most storefront locations, or book a private party with a few friends.

Details (from, for example, the Let's Dish website):


In-store Session
At a Let's Dish! In-store Session, you'll make 4, 8 or 12 fabulous family-sized dishes (4-6 servings each). Here's how it works:

  1. Place your order online
  2. Clear some space in your freezer
  3. Come in to our store and prepare your meals just the way you like them.
  4. Back at home, you've got fresh and delicious, home-cooked meals whenever your family needs 'em.

Dish-n-Dash®
Sometimes there just aren't enough hours in the day. When you're short on time, choose Dish-n-Dash, and for a small additional fee we'll do the dishing for you. Here's how it works:

  1. Place your order on line, including any special instructions
  2. Stop by our store to pick up your professionally-assembled meals
  3. Once at home: Ta-daa. Dinner! Your meals are ready when you are

Dish Delivery

Enjoy the ultimate in convenience: 4 or 8 dishes, professionally assembled and delivered directly to your (or someone else's) home. Here's how it works:

  1. Place your order online... we're happy to customize
  2. Put up your feet... Your dishes will be packaged and shipped via next day delivery
  3. Dinner's ready! No one needs to know that we did all the work
These are great options not only for those who don't have the energy at the end of the day to put a home-cooked meal together, but also for people with kids, those who work late but don't want to eat out every night, or anyone looking for a good meal with little to no mess!

A friend of ours in California actually participates in a two-meals a day program. He's single, doesn't like to cook, but doesn't want to sacrifice the healthy aspects of eating "at home" by eating out all of the time. So he's opted into a service that provides and delivers to his door fully prepared, well-balanced, yummy meals (2 per day) at the beginning of each week, and then he's set. You can imagine that the service costs a pretty penny, but when we saw him last, he was a model of good health - lean, mean, and well-fed. I say if it works, do it! (Check out Home Bistro for an example of this kind of higher-end meal service.)

Options for other more affordable, yet deliciously prepared-meal services around the country:

Let's Dish has locations in the states highlighted in orange on the map at the left.

Dinner Done can be found in Tampa, FL, Brandon, FL, as well as Centreville, VA.

Main Dish Kitchen locations can be found in Ann Arbor, MI, Dayton, OH, Grand Rapids, MI, and Madison, WI.

Dinner My Way has locations throughout the great state of California.

Dinner by Design covers a good part of the Midwest, as seen on this map at the right.

here's one more for you. Dinners Done Right, which services the states of Oregon, Washington and Montana. (Thanks, Maria!)

And if you're mouth isn't watering after checking out some of the wonderful dishes these companies can provide (complete with nutritional value and ingredient content), it should be!

Tuesday, August 12, 2008

Pregnancies Then and Now: A Comparison


I've had several people ask me what the secret has been to my (thus-far) successful Lupus pregnancy. While I feel very fortunate that it has been complication-free, I can attribute my good fortune to a couple of things in particular. I can do this primarily because I went through the first 8 weeks of an unsuccessful pregnancy about five years ago - and I know exactly what I've done differently this time around.

This time, I was...

1) 100% healthy before becoming pregnant:

This time around, I made sure I was healthy and stable for months (actually years!) before getting pregnant. That doesn't mean I wasn't on medication. To the contrary, up until last summer I was on CellCept, and then switched to Plaquenil, which I'm still on, in addition to a daily baby aspirin. And since being pregnant, I've added Lovenox and Chromagen. The last pregnancy, though, required me to go off two antihistamines (for my angioedema) and an anti-inflammatory (which I desperately needed). I was still on prednisone, but went down on the dosage to the point where it wasn't curtailing my pain. If I had been smart, I would have realized my body wasn't ready for pregnancy. But you know - that was then, and this is now. I've come a long way!


2) Willing to listen to and follow doctors instructions:

I've always listened to what my doctors have told me, and rarely strayed from their medical advice, particularly when it came to medicines, tests, and procedures. However, when it came to taking time off to allow my body to heal after a miscarriage, I wasn't so attentive. One doctor in my perinatal practice told me after that miscarriage that the most important thing I could do was to get my disease under control, and then I could start trying to get pregnant again. Well, I heard the second part of the sentence, but didn't really listen to the first part.

This time - though - I am all ears - eager to heed their advice and admonishments. And what a difference it's made!

3) Excited to try and have a baby, but not reliant on the idea to improve my health or adhere to a time line:

When I tried to get pregnant years ago, I did so primarily because I was ready to have a baby. But I must admit that I'd also heard that during pregnancy, one's Lupus symptoms often fall by the wayside, and you feel better than you've ever felt before. Well, since I was feeling fairly crummy (sans the medications I needed to ward off the pain), I thought pregnancy would be a great way to feel good. What a backwards way to look at the whole thing! I also thought that since we'd been married two years and I was 28 years old, it was time to have a baby. I gave little thought to what my body was capable of at the time, or how circumstances might have changed since I'd first drafted my life's agenda. It didn't matter, back then.

This time, I go back to the #1 item on my list - I made sure I was 100% healthy (in mind and body) before becoming pregnant, to hopefully ensure that I would feel good (about whatever transpired) during the pregnancy.

4) Willing to sacrifice for the benefit of my own well-being and that of my baby's:

The first time around, I had no intention of slowing down, skipping out on activities, or owning up to the fact that I didn't have to be a superworman during pregnancy. This time, though, I jump at the chance to stop and relax. I'm perfectly happy taking it extra easy...it's brought me to 30 weeks and counting, so I'm clearly doing something right.

Months ago, Johnny agreed to venture into this pregnancy thing ONLY if I was willing to do what needed to be done to take care of myself, which in most cases, meant NOT doing what I thought needed to get done. He's been great about helping out when the pug hair on the stairs was too thick for me to stomach (b/c I'm not supposed to vacuum), or when the laundry was piling up (b/c the baskets are too heavy for me to carry), but I, too, have done my part by letting things go when normally I might not have.

We've been willing to sacrifice time, too, to ensure that things go as smoothly as possible. Each of my bi-weekly sonograms is about a 4-hour venture (including travel time, wait time, etc.), but neither of us has missed even one. I'm used to sitting in the doctor's office, but this is a new thing for Johnny. We've both learned the hard way that doctor's office reading material cannot be relied upon (the Woman's Days and Real Simples aren't doing it for him), but I think at this point, we have the appointment thing down to a science.

Lastly, and I won't harp on this too much, we've been willing to sacrifice money in order to ensure Bun's safe keeping. I know I've mentioned it before and fully realize that most patients with a chronic illness face the exact same thing at one time or another, but I can't tell you how happy we are to have paid our final monthly installment of $850 for the Lovenox medication (only 34 pinpricks to go!) In addition, each appointment runs us at least $100 because of the extra blood tests or exams that need to be run but aren't covered by insurance. All in all, we've had a big chunk of change to pay every month since April, but we haven't regretted one dollar of it. And Bun will thank us for it in October, I'm sure.

There it is - my take on what makes a successful Lupus pregnancy. Have I forgotten anything?

Monday, August 11, 2008

Popeye to the Rescue

My most recent blood tests show that I'm a little anemic, despite the fact that I'm taking the prescription iron supplement chromagen, a pre-natal vitamin, AND eating a bowl of Special K (which has 45% of my daily iron intake) on a daily basis. I often border on anemia, so it's of no big concern, although I did land myself in the hospital one time partly due to the fact that I was severely anemic. Guess I wasn't eating my spinach.

Which leads me to wonder what I should be eating...since I actually don't care for spinach, broccoli, or beets...the biggies that the doctor suggested. I might switch to Total Raisin cereal (which has 100% of my daily iron) or Quaker Oatmeal Squares (which has 90%), and I can definitely add some red beans to my diet, which was another recommendation. Other than that, I'm up for suggestions from the peanut gallery. Any ideas on how Bun and I can get some more iron?

In my preliminary research (which for me means the 5 minutes I'm going to spend looking into this issue), I found that iron deficiency is the most common nutrient deficiency to occur in the human body. Hmmm, glad to know I'm not alone. Additionally, Vitamin C can help your body absorb iron, so it is a good idea to pair iron rich foods with other foods that have a lot of Vitamin C, including citrus fruits and iron fortified orange juice. And fact number three - it is harder for the body to absorb the nonheme iron that is found in fruits, vegetables, and grains, than the heme iron that is found in animal foods, including red meats, poultry, and fish.

Guess it's back to the meat counter for some lean cuts of meat. I don't mind...I make a pretty mean steak salad. Might as well give you the quick version of the recipe while I'm at it:

Romaine lettuce, chopped
Lean, thinly sliced grilled steak - my cuts of choice: boneless ribeye, t-bone, or filet mignon. Don't skimp on the quality - it makes all the difference.
Handful each of chopped red pepper, diced red onion, and chopped tomatoes. (I recently added chopped mushrooms and avocado, too)
Chopped pecans
A little chopped bacon
Crumbled Feta cheese (or gorgonzola crumbles)

Toss all together. Top with Blue Cheese vinaigrette dressing (or a creamy ranch). Serve with homemade grilled potato wedges tossed in a little olive oil, paprika, garlic salt, and a dash or two of season salt. Enjoy!

Friday, August 8, 2008

Pointing out the obvious


Here's a quick, little experiment to try, courtesy of an article in this month's issue of Arthritis Today:

Hold out your hand (either one, palm down.)
Is your index finger shorter than your ring finger, even by a few millimeters?

Turns out most women tend to have index and ring fingers that are of the same length, while men typically have index fingers that are shorter. If you're a woman, and your index finger is shorter than your ring finger, you may be three times more likely to develop osteoarthritis in your knees.

I don't usually put much stock in these kind of things...although I do get a kick out of them every once in awhile. I was in the doctor's office when I was reading this Arthritis Today article, and I casually glanced down to check out the fingers on my right hand. Sure, there was a slight difference in length between the two, but I didn't think much of it. I finished the article, then happened to glance at my left hand, and I literally let out a little screech when I did: there was a noticeable difference between the two fingers on my left hand, and my pointer finger was clearly shorter! (Kind of stubby, in fact.)

Guess these things do work sometimes! Let me know how your fingers measure up. My mom noticed a digit variance (we like to throw around the technical terms here at Despite Lupus), and she, too, has OA in her knees and hips. Yes it could be genetic...but maybe not!

Have a great weekend (and thanks to my mom for providing me with a hard copy of the article.)

Thursday, August 7, 2008

Quote of the Day


"Experience is what you get when you don't get what you want."
Randy Pausch, The Last Lecture


I just finished reading "The Last Lecture" by Randy Pausch, the Carnegie Mellon professor who recently passed away due to pancreatic cancer. The book was great, and I understand that watching his hour-long lecture (which can be viewed here on youtube) is even better.

There were many wonderfully poignant passages in the book, as well as some great quotes, but the one I mentioned above is my favorite. Now that I've lived through some of my most challenging trials with Lupus, I can clearly see that I'm a stronger, more mature person because of them. However, when I was struggling to find my way, I wasn't quite sure WHAT the point of it all was. Why did I have to sacrifice so much, and why was I being forced to make decisions that I didn't want to make? This quote helps me to remember that it was
experience that I was gaining...and thankfully, I'm now able to share that experience with the rest of the world.

Check out the book on Amazon - see the link at the side of my site under "Lupus Literature."

Tuesday, August 5, 2008

Stubborn as a Mule


I've come a long way. Not so far that I don't remember my days as a stubborn, determined young lady struggling with Lupus, but far enough that I've learned how to encourage others from making the same mistakes I did years ago. Here's what recently happened:

A newly-diagnosed Lupus friend of mine called to see if I had ever had any sort of skin rash due to the disease, caused by the sun or otherwise. I said yes, of course, and she said she's just developed a rash, but she's not sure it's Lupus-induced. She started on a new medicine recently, and is thinking maybe it's an allergic reaction to that (or something else), but she did just return from a week-long vacation at the beach, where she was in the sun everyday, and even came away with a bad sunburn on her back one afternoon. Just as we all did in the beginning, she's hoping that she doesn't have to add photo sensitivity to her list of ailments, but alas, I think she might have to.

So here was my advice to her - check in immediately with your rheumatologist and let her know what's been going on. She may refer you to a dermatologist, or may be able to prescribe a topical cream herself, but either way, don't waste another moment trying to figure out what brought on that rash. It's not worth waiting, believe me!

One summer, I broke out in a rash on my chest, in the exact spot where most of my v-neck shirts didn't cover. For some reason (be it embarrassment, extreme optimism, or the sheer fact that I was tired of bringing up even one more symptom to my doctor), I resisted in seeking help. Instead, I just tried to cover it up, but after about four weeks of enduring this ridiculous rash, (and seeing photos of myself at a party where my fancy dress exposed the rash and I looked downright silly because of it), I decided to call up my dermatologist. (My rheumatologist appointment wasn't for another two weeks.) I went in, and the doctor determined that it was, indeed, a sun/Lupus induced rash. He prescribed a topical steroid cream that wouldn't conflict with my other Lupus meds, and within 24 hours, the rash was gone.

What had I been waiting for? I knew I had photo sensitivity, but my typical sunlight symptoms (swelling, flu-like symptoms, fever) weren't present, so I tried to tell myself that this couldn't be Lupus. I learned that day that it doesn't matter what I think; I have Lupus, and there are plenty of doctors, medications, and preventatives out there to help me deal with it.

I'm curious to know what kind of photo sensitivity is out there amongst my readers. Does everyone have it? To what degree? Take a minute to fill out the poll at the side so we can see. Maybe it will show my friend that she's not alone!

Monday, August 4, 2008

My Syringe Collection

As you know, everyday since the middle of April, I've been giving myself daily injections of Lovenox, an anticogulant, to keep my blood flowing and my pregnancy running smoothly. While I gathered up the first month's empty syringes and took them with me to the doctor's office for disposal, it turns out they weren't able to take them off my hands. The office is required to remove the needle from each syringe before disposal, but since mine are close-capped syringes where the needle is fully encased in a plastic sheath after I administer the shot to myself, they can't take them. They kindly accepted that first batch since I had them with me, but they said I would need to dispose of the needles myself throughout the rest of the treatment.

When I asked the nurse how I should go about doing so, she suggested I find an old milk jug or soda bottle, fill it with syringes, write "Medical Waste" on the outside, tape it up at the top, and throw it in the garbage. That didn't sound too plausible to me, so at one of my next appointments, I asked a doctor. He said definitely don't use a milk jug. Instead, go to the drugstore, buy an orange medical waste container, fill it up, and then contact the county government to find out where and how I could dispose of them properly. The medical waste container sounded a little more reasonable, and it turned out the mail-order pharmacy I use was willing to provide the containers to me for free. As far actually disposing of them, though, I figured it would be a hassle to wrangle an answer from any government entity, and so I've just been storing up a nice little collection of used- syringes (albeit close capped) because I've been too lazy to figure out how to get rid of them. Until now.

Blame it on my nesting instinct or whatever it is, last week, I was fed up with the syringes. I wanted them out of the house, and I was ready to find out just how far I'd have to drive in order to dispose of these silly syringes at some medical waste facility in the middle of nowhere. So much for getting myself all worked up for nothing. I went online, typed in my county name and the words "medical waste", and here's what came up:

HOME-GENERATED MEDICAL WASTE

Steps for Disposal

  • Rigid Container: Use a container with a screw-on cap such as an empty laundry detergent bottle, bleach bottle, or 2-liter soda bottle. The bottles must be able to be marked with a warning label using a felt-tipped marking pen. Note that the heavier duty laundry detergent and bleach bottles are preferred to the soda bottle.
  • Label/Warning: Place a large label with a warning on the container. CAUTION! SYRINGES - NEEDLES. DO NOT RECYCLE!
  • Clip the needle, or recap discarded sharps: Clip the needle if you wish. You can purchase an inexpensive hand-held needle clipper at a pharmacy. After clipping the needle, carefully place each of the used needles and syringes into the plastic bottle with the screw-on lid. An alternative is to also recap or re-sheathe the needle.
  • Seal: After the container is full, seal the bottle with the original cap and wrap tape over the cap.
  • Disposal: Dispose of the sealed, full container with your household trash. DO NOT place the container in the recycling bin.
Not only was the nurse absolutely correct, I could have been throwing the syringes away in the trash all along! To make a long story short, today was trash day, and I don't have to tell you what they picked up in my trash can. Good riddance to bad (and sharp, pointy) rubbish!

Here's a little more on Home Medical Waste - all of which came from the handy-dandy website I found. I'll never underestimate my county government again...until the next time.

HOME MEDICAL WASTE

What is it? This is medical waste created through the administration of injectible medications and other invasive or non-invasive procedures. It includes, but is not limited to, syringes, needles with attached tubing, and other materials. The most common type of home-generated medical waste is needles and syringes. It DOES NOT include medical waste produced by home health care workers (physicians, nurses, home health aides, etc.)

Why is it a potential threat? First, the disposal of home-generated medical waste is not regulated. Second, there can be a significant potential hazard to many persons including family members, sanitation workers, and people in the community. Finally, home-generated waste can pose a threat to the environment. Sometimes people flush used syringes down their toilets. Because these syringes are light-weight and float, they are difficult to remove at the wastewater treatment plant. Often these "floatables" end up in rivers, along river banks, the ocean and on beaches. This was the case in 1987 and 1988, when numerous syringes were found on the beaches of Rhode Island.

Saturday, August 2, 2008

The first newborns on the block


Big news on our street this weekend. Annie, our neighboring pug (I know, how lucky can one neighborhood block be), had puppies on Friday. Matilda and Roscoe arrived early on Friday morning, cute as buttons and ready to tackle the world. Well...not quite. Their eyes and ears won't open for another two weeks, and they pretty much sleep every moment of the day, when they're not eating.

Proud mama Annie isn't sure what to make of the whole thing. She's a bit weighted down at the moment, and while I'm sure she just wants her pugish figure back (don't we all, honey!), she's been a little reluctant to let her two pups feed. The exhausted, yet devoted owners are picking up the slack as they supplement with bottles.

If I wanted a glimpse of what is to come 2 months from now, I got it first hand. We saw Annie in labor on Thursday night (she did NOT look like she was having fun), heard about the exhaustive birthing process (which went all night long), and are witnessing the aftermath (several bleary eyed owners and one very bewildered mom.)

Oh my. What have I gotten myself into?

Friday, August 1, 2008

9 Weeks and Counting...


That's right - Baby Bun is scheduled to arrive (via induction) in nine weeks on October 4th, if not before. Hard to believe my pregnancy is coming to a close, although some days, it's more surprising to think that I'm even pregnant in the first place.

When I sought to get pregnant for the first time more than five years ago, I never gave any thought to the idea that I might not be able to do what I wanted when I wanted to do it. When I miscarried at 8 weeks, I was devastated, but I wasn't deterred. I got back on the saddle and started the process again, determined to do what I set out to do. I had a plan, and I had every intention of seeing it through to the end. At the ripe age of 28, I had life all figured out.

Turns out, a baby was not in the master plan for us at age 28 or 29, or even 30. It wasn't until Johnny and I put aside our age barometers that we realized that children would come when it was time, when Lupus (and my body) were good and ready. We decided that we should enjoy every moment of the life we had while we had it. And enjoy it, we did.

Today, at 34, I realize I still don't have life figured out, but I do know that if you allow yourself to throw life's game plan out the window, there are wonderful surprises waiting for you on the field. Every time Bun gives me a wallop of a kick, I'm both thrilled and thankful that I have the opportunity to feel those little feet, elbows, and knees knocking around in my tummy.

I think how perfectly timed this pregnancy has been, how stable and healthy and strong I am, and how Johnny and I couldn't be more prepared to become first-time parents,
(to a HUMAN baby, that is) than we are right now. This is the way life was supposed to turn out. There's no doubt about that now.

There have to be a few moms and dads reading along who are silently laughing to themselves, thinking that the Gormans have absolutely no idea what's ahead of them. Well, we sure don't, but we're looking forward to whatever it is!

However, just so no one thinks we're in complete denial, any ideas on what Johnny and I should try and do before our lives are turned upside down? While traveling far distances is pretty much out of the question (for me anyway...more on that later), what will Baby Bun make it particularly challenging for us to fit into our schedule in the near future? Movies? Dinner? Bring on the ideas - and I'll even take some new parent advice while you're at it. I don't ask often, so you please take advantage of it!