Wednesday, April 30, 2008

Shedding More than My Lovely Locks, Part Three

This is Part Three of a three-part blog series taken from Chapter 6 of my book, "Despite Lupus". This chapter, titled "Loosening Your Grip", focuses on re-evaluating your expectations and goals. In doing so, you may discover that your self-image is dangerously entangled in your career, accomplishments, or appearance, all of which may be forced to change due to your disease.

After my hair appointment, I went home to show Johnny my new ‘do. He absolutely loved it! He thought I looked like a sophisticated model from a magazine, and immediately insisted that we have an impromptu photo shoot in the back yard. The loving, enthralled look he had on his face as he shot those pictures made me feel like I was the most beautiful woman in the whole world. He was always telling me I was, but I will forever cherish the captivated way in which he embraced me and my new haircut that day. After shooting a few pictures, he proudly sent them off via email to some family members, who all responded with complimentary remarks.

I continued to receive the same kind of feedback during the next few days from friends and co-workers. While people were decidedly remarking on the haircut, I know they were also responding to the evident changes in my persona. Gone were my feelings of humiliation and self-consciousness, boldly replaced with confidence, composure and dignity. I was no longer ashamed or embarrassed by what Lupus had done to me. I could discuss the effects and symptoms I’d suffered without hesitation, because in the same breath, I could speak of the steps I was taking to manage its fallout. I was showing the world that while Lupus may have taken my hair, it wouldn’t rob me of my vitality, my spirit, or my spunk.

Within weeks of getting my haircut, I courageously began considering what other aspects of my life might benefit from such an overhaul. To begin with, I reviewed and dismissed all of the outdated and unrealistic expectations I had created for myself. The vision I had of myself consisted of a woman with thick, dark hair, a multi-tasking, driven, perfectionist attitude, and a flourishing, thriving, demanding career. If my hair was no longer an identifying mark, was I mistakenly defining myself by these other things, too? As I established new and relevant goals for myself, I based them upon what I could do, what I wanted to do, and what I needed to do to feel good, inside and out. I concentrated on making decisions that wouldn’t just perpetuate my life, but that would improve it.

The days and weeks after I got my haircut marked the beginning of my new life with Lupus. The dramatic, positive changes that took place during those months extended into years, and continue today. Still, I strive each day to maintain the healthy lifestyle that I’ve become accustomed to. While the decisions I’m faced with haven’t diminished completely, they have gotten easier. Living well isn’t something I have to work hard to achieve anymore. Today, it just comes naturally.

Thinking about cutting your hair short, either by choice or by force? Check out this article about short hair to do's - it will remind you how chic, hip and stylish you can be, with or without long locks!

Tuesday, April 29, 2008

Shedding More than My Lovely Locks, Part Two

This is Part Two of a three-part blog series taken from Chapter 6 of my book, "Despite Lupus". This chapter, titled "Loosening Your Grip", focuses on re-evaluating your expectations and goals. In doing so, you may discover that your self-image is dangerously entangled in your career, accomplishments, or appearance, all of which may be forced to change due to your disease.

The results of the hair count revealed what I had suspected: I had lost an inordinate amount of hair in a very short period of time. The doctor confirmed the diagnosis, but he also had some good news to share. He had discovered the slightest amount of new hair growth on various parts of my head. He had to look through a super-powered magnifying eye contraption to see it, but he firmly believed that my hair loss was nearing its end. New hair growth would be revealing itself to the naked eye within a few weeks. I was thrilled, relieved, and quite emotional over the fact that I would once again, have a full head of hair.

However, because the new growth indicated that I didn’t need a cortisone shot or other mediation to stimulate the hair follicles, I was at a standstill. All I could do was sit back and wait for my hair to begin to grow. But what was I to do with the dozens of stringy strands I was carting around on my head now? Once the little stubble hairs started growing, I was going to look really ridiculous.

Up until now, I had been grasping at those long, wispy strands as if they represented the stranglehold I had on life. My balding head was one of the only obvious, external casualties I'd suffered from Lupus, so I thought holding on to those last few hairs would save me from admitting that my life had changed because of the disease. I wanted to live the stubborn, determined, pushy way I always had: never giving in and not ever giving up. But staring at the wreckage left on my head, I began to realize that the life I’d known had already been left behind.

It became apparent that this was an opportunity to forge a new attitude – one that didn’t rely on my past assumptions or expectations. My approach had always been to stand fast against the onslaught of Lupus, preserving the precious identity I’d created for myself. But maybe it was time I changed strategies. Instead of protecting the existence I had, I could begin constructing a new way of life. It would require a more flexible, amenable, accepting approach than I had before, but I knew I was capable of adjusting. Just because I’d always had thick, long dark hair in the past didn’t mean it was an essential part of who I was moving forward. And as the reality of the situation sunk in, I knew it had to be that way. At present, those long, thick locks didn’t even exist. If I was to move on, I’d have to do it without them.

"The greatest discovery of my generation is that human beings can alter their lives by altering their attitudes of mind."

My next move was one of the more bold decisions I’ve made in my life. I took out the phone book, turned to the section on hair salons, and randomly chose the name of a place I’d seen a few times in the mall. With my husband and sister once again gathered around for support, I placed a call to the salon and made an appointment to have my hair cut later that day. I was scheduled with one of their “short hair experts”, a gentleman named Ty who, I was told, would “totally know what to do.” Glancing in the mirror moments before my sister and I headed out the door for my appointment, I caught sight of my face and the wispy strands wrapped up around my head. Somehow, I already looked different. Maybe it was the relief from finally making the decision to be proactive rather than reactive, or maybe it was the courage and renewed sense of self that had come over me since I’d made the call. Whatever it was, I knew my life was about to change. Not just because I’d have a new hairdo, but because I was taking steps to rid my life of the hurt, anger, and resentment I’d carried around over the last four years with Lupus. This was my chance to start over, a shot at a new beginning. I’d still have my disease, but I’d have a whole new outlook. Instead of fighting life, I was going to start living it.

The details of my hair cut with Ty were somewhat uneventful, although I can say that he is one of the more colorful, uninhibited, albeit compassionate people I’ve met. I explained my situation to him: the disease, the hair loss, the recent hair growth that was barely there, and his comprehension and acceptance made it seem as if he worked with balding, stringy-haired clients every day. He was encouraging, respectful, and treated me with the dignity I would expect from a good friend. He wasn’t pitying me as he cut; he was creating his own little masterpiece. The details he shared of his personal life kept my sister and I conveniently entertained as he worked away, and before long, he spun me around so that I could see the results of his labors. He’d given me a fashionable, super short, pixy-like hairdo that fit me, my face, and my personality perfectly. I instantly felt refreshed and renewed, but more than that, I felt beautiful, inside and out.

Ty set me up with a few jars of product and step by step instructions so that I could make my hair just as "playful and sassy" at home. Before I left, he also asked if I wanted to “keep the tail”, the mere strands that he’d pulled back into a makeshift pony tail and then cut to begin my transformative hairdo. My sister and I took one look at the wet, ragged strands that now resembled a rat’s tail, (and probably did when they were on my head, too) and just burst out laughing. “I don’t think I’ll be needing that,” I said, and I knew I wouldn’t. At least not where I was going.

Find out the conclusion to "Shedding More than My Lovely Locks" in Part Three tomorrow!

[1] Philosopher and Psychologist William James, as quoted in Guidepost Magazine.

Monday, April 28, 2008

Shedding More than My Lovely Locks, Part One

This is Part One of a three-part blog series taken from Chapter 6 of my book, "Despite Lupus". This chapter, titled "Loosening Your Grip", focuses on re-evaluating your expectations and goals. In doing so, you may discover that your self-image is dangerously entangled in your career, accomplishments, or appearance, all of which may be forced to change due to your disease.

About a month after I was discharged from a week-long hospital stay due to complications with my disease, my hair started falling out. At first, it was just a strand or two at a time, showing up on my pillow or in the shower after washing my hair. Over the course of a few weeks, those strands turned into clumps, and I couldn’t even slip a shirt over my head without a fistful of hair coming loose. Even then, I wasn’t too concerned. Since my diagnosis several years earlier, I’d lost a considerable amount of hair on two separate occasions. During those previous instances, the loss wasn’t too substantial and stopped after about two months. In fact, after each of those bouts, you couldn’t even tell that I’d experienced any alopecia, as hair loss is clinically called. My husband and I could tell that my thick head of dark hair had diminished, but others around me never would have guessed.

I was beginning to realize that this time was different. The hair loss was much more drastic, leaving me with mere strands at the two-month mark. I started pinning my hair up in a bun to try and mask the obvious bald spots, but my hair became so thin that no amount of “comb over” could hide the loss. Two things forced me to finally own up to the fact that the loss was abnormal and that I needed to seek professional medical attention.

One was that my thin wisps of remaining hair no longer held the tiny, baby barrettes in place that I was using. I hadn’t started with those mini clips, but had been forced to progressively downsize from the big, chunky ponytail barrettes I’d started using just weeks before. I’d been through about 5 different sizes before finally bottoming out at the newborn baby clips.

Secondly, Johnny, who had lovingly checked me for bald spots every morning before work, suggested that if I thought it might help, I could always look into getting a wig. He always reassured me that I looked beautiful no matter how much hair I had, but he knew I was nearing my breaking point. I was frustrated with the drastic change in my appearance and infuriated that the loss hadn’t subsided. I was probably most upset that my positive, “It’ll grow back” attitude wasn't working yet. I was feeling violated, naked, and abnormal; when I glanced in the mirror, I didn’t recognize the person looking back.

Because I’d consulted my dermatologist twice before, I knew the drill by this time. He’d ask me to perform a painstaking, week long hair count, which involved no less than the following steps:

1) Collect 7 envelopes and label each with the date and day of the week for the seven days of hair collection.
2) Vacuum the floor of the bathroom and bedroom and brush off or change pillow case and head of bed at the beginning of the week. Clean combs and brushes and remove all hair.
3) Beginning at 12:01am of day one and continuing until midnight of each day, or for any other 24 hour period (e.g. bedtime to next bedtime), collect all hairs that fall from scalp and place in an envelope for that day. Remember combs, brushes, pillow, shower, sink, drain, collars, etc.
4) Mark the envelopes on the days of shampooing with an “s” or the word “shampoo.”
5) At the end of the week, clean off a table with a bright light and contrasting background. Open each envelope individually, count the number of hairs, and write it on the outside of the envelope. Put the hairs back in the envelope and seal it.
6) Bring the envelopes to your next appointment for your doctor to evaluate.

Also noted on the instruction sheet was the following:

We recognize this is not exact but it is economical. It does give us a rough idea of the degree of hair loss. A normal daily hair loss count is up to 50-100 hairs, and up to 150-200 on shampoo days. Our bodies replace that many hairs each day.

It turned out that I had quite a few strands to count. During my past two rounds of hair loss, I averaged about 200 hairs on non-shampoo days, and somewhere around 350 hairs on shampoo days. The loss was definitely elevated, but the doctor assured me back then it wasn’t anything to be extremely concerned about. However, when I performed this recent hair count, I was losing between 500-700 hairs a day, even more on the days I shampooed. By this point, though, I had stopped shampooing my hair in a traditional manner, and had taken to creating a lather of shampoo in my hands and then gently patting it onto the few brave strands of hair that remained.

With significant hair loss confirmed, what was I to do next? Stay tuned for Part Two of "Shedding More than My Lovely Locks" tomorrow.

Friday, April 25, 2008

Lupus Bling!

Check out the new Lupus Benefit Necklace!

Online Gift Source Company Purple Maple donates $15 to the Lupus Foundation of America from the sale of their exclusive "Circle of Hope" Necklace.

Purple Maple...fabulous ethically sourced gifts from around the world.

This gorgeous "circle of hope" lupus awareness necklace incorporates textured sterling silver ovals flanked by beautiful purple freshwater pearls. This necklace includes a sterling silver chain and lobster clasp. Measures 16 inches with a length extender. Show your support with this elegant conversation piece. This exclusive gift item comes ready to give in purple box with a purple bow. The gift is placed inside a purple organza gift pouch. A gift card notifies the gift recipient that $15 from the sale of this necklace is donated to the Lupus Foundation of America.

Click here to check it out online!

Thursday, April 24, 2008

To Inject or not to Inject?

One of the biggest decisions I've had to make thus far in my pregnancy was whether to or not to start taking daily shots of the anticoagulant drug, Lovenox, a form of heparin, used to help thin the blood. A few of the Lupus antibodies I carry, Lupus anticoagulant and antiphospholipid antibody syndrome, tend to make the blood clot, leading to the potential for a miscarriage. Five years ago, I did have a miscarriage at 8 weeks, but it did not appear to be because of a clotting issue. However, because of my previous miscarriage and the fact that I've tested positive for these antibodies in the past, my doctors proposed the option of starting the drug.

I use the word "propose" because of the three doctors I'd seen thus far in my Perinatal practice, two of them felt I should definitely start the drug but the third wasn't sure it was entirely necessary. My rheumatologist thought no, my pulmonologist thought yes, and I was confused. In the end, after much debate and discussion amongst my entire medical team (thank you, team!), the consensus, and our personal decision, was to start the drug and eliminate the possibility of a problem down the road.

Since starting, I've discovered two other girlfriends who were on the drug during their non-Lupus pregnancies, two women from my Lupus group who were on the drug for other reasons, and reassurance from an aunt who is a labor and delivery nurse that it is a very typical drug of choice during high-risk pregnancies. So...I feel very good about my decision, aside from the fact that my insurance is only covering one and 1/2 month's worth of medication, and a monthly dose runs between $900 and $1200 a month.

When Johnny and I discovered the cost of the drug, we tried not to let that influence our decision. We wanted to be smart about our finances, but no amount of money is too much to ensure a safe and healthy pregnancy. Anything for Baby Bun, right? Plus, my doctors have been very encouraging and accommodating in helping me make an appeal to my insurance company. It's possible that the drug may get covered in the end, so cross your fingers. I know Bun's are!

As far as administering the injections go, it's a pretty easy process. My doctor mentioned that by the end of my pregnancy, I was going to look like a bad peach, but I think I'm well on my way. I inject one dose every morning into my upper leg, alternating between the right and left, after using an alcohol swab to clean the skin. I also take an ice cube and numb the skin (and the capillaries on the surface of the skin) for a minute or two prior, ideally reducing the bruising. I got a little fancy recently and tried a few mornings without using the ice (because 3 of my 4 friends who used the drug never opted to ice), but I think I'll stick with the numbing. Why not, you know?

Wednesday, April 23, 2008

Great Turnout for the Lupus Walk this past Saturday!

For the past two weeks, I had a link to donate to the 2008 D.C. Walk for Lupus on my blog. The walk was this past Saturday, and it was a huge success! I wasn't available to walk myself, but I had many friends who participated and had a great time doing it.
Details of the walk were featured in this issue of the Lupus Foundation, Greater Washington Chapter Newsletter. I've also included a few more tidbits from the newsletter - as I thought you might be interested to see what's going on in the world of Lupus!

Lupus Foundation of America, Greater Washington Chapter Newsletter
April 22, 2008

Amazing Day for Walk for Lupus Now 2008!

We are excited to report that the 2nd-annual Walk for Lupus Now was a HUGE SUCCESS! We had lots of sunshine, an enthusiastic crowd, and a fantastic group of volunteers who helped everything run smoothly. We reached our goal of having over one thousand walkers and we only hope to keep growing next year. We are still entering the checks online, but we know that we brought in over $142,000! That is more than double what we raised for last year's walk and we could not be happier with the level of support we have received from thousands of you. And while we are excited to have that money in the bank, we are thankful to be able to give it back to lupus patients and their supporters in the form of patient symposia, support groups, health fairs, promotion of lupus research, and more. Thank you to everyone! We could not have done it without the wonderful support of our sponsors: Human Genome Sciences, Assurant Health, Datatel, Commerce Bank, The Washington Informer, and Balloon Crafts. We'd also like to send a special thanks to Sharon Essex, Carolyn Rumpel, Michael Harris, Icee Me Shaved Ice,Whole Foods, Au Bon Pain, Safeway, and CVS.

LFAGW Announces 13th-Annual Patient Symposium on June 7

Taking Charge and Feeling Better is our biggest education event of the year. We will return to George Washington University on June 7th from 9:30-1:00. The day will include a Newly Diagnosed Patient Workshop, a Spouse and Family Support Group, and sessions on dermatology, lupus nephritis, women's issues, and weight and nutrition. In addition, Arthur Weinstein, MD, will give an update on lupus research and clinical trials. You can register by sending an email to Give us the name, address, and email for all participants. We will send you a confirmation and updates on the program.

The symposium is provided as a service to lupus patients and their families; the costs are underwritten by our fundraisers such as the Walk for Lupus Now.

Get Your Tickets Now for an Evening of Dinner and Jazz

Call for your tickets to an Evening of Dinner and Jazz now! The venue needs a firm reservation by Wednesday for this fun event! It will take place on April 26th, hosted by Lenny McLean in support of LFAGW's mission. The night will feature Lenny's band the On Kee Jazz Band and will take place at Michael's Eighth Avenue Function Hall in Glen Burnie, MD. Dinner begins at 8:00 PM and music and dancing will continue until 1:00 AM. Tickets are $55 per person ($25 tax deductible) or $90 per couple. Your ticket includes a dinner buffet, soft drinks, ice-cold beer, live jazz and On Kee Jazz Band's latest CD release "Positivity." Proceeds from a raffle will benefit LFAGW. Contact Lenny McLean for tickets at 301-213-1056 or at Don't miss this great night!
Penny Fletcher
President and CEO
Lupus Foundation of America, Greater Washington Chapter
(202) 349-1167
Toll-free in DC, MD, VA, and WV (888) 349-1167

Tuesday, April 22, 2008

Humor Yourself

With all my talk about my lip swelling yesterday, I was reminded of what it used to be like to have that insufferable symptom crop up every week or two. I used to get so frustrated when it would happen, primarily because I had no way of predicting when it was coming on, nor could I stop it once it started. Sure, I had a concoction of pills I would take to try and stop the process (Prednisone, a steroid, and Zantac and Zyrtec, both antihistamines), but the drugs could take anywhere from 3 to 24 hours to start working.

After awhile, I learned that instead of continuing to focus on the physical problem, I needed to start working on an emotional (and angst-free) solution. For me, that meant sitting back, taking my medication, and making light of my situation while I waited for the medicine to take affect. In fact, my family was a tremendous help in making my situation more bearable.

My parents would often call and ask how my Luppie Lips were from day to day, and my husband started referring to my affliction as Lippus (vs. Lupus, of course.) My sister helped too - she'd put on extra pouty gloss and lipstick to make her lips looks extra full in an effort to commiserate with me. My in-laws even played along. I remember being at their house one weekend, on the downswing of a swelling incident. We got in the car to head out for the day, and I made a joke about there not being enough room in the car for the four of us, plus my lip. They said something to the effect that we could take the bigger car to ensure that there was enough space.

Even my rheumatologist would refer to me as "Angelina" from time to time - telling me he thought the lip enhancement was a good look for me. Of course, he usually only saw me the day after an incident, when my lips just looked extra pouty rather than mildly deformed.

You wouldn't believe how much these light-hearted comments helped. It made me feel as though it wasn't just me alone, fighting my monster-truck lips. Even Henry our pug was willing to get into the groove. When Johnny and I used to both work long hours at the office, our dog sitter (and good friend Aria) usually came by the house around 3pm to let Henry outside. He'd do his business, and then wait for us to come home later that evening. One day, we came home, and there was a note from Aria, telling us that Henry was limping, and seemed to have a stiff leg. By the time we got home, he was still limping a little bit, but by the end of the evening, he'd seemed to work all of the kinks out. We got such a kick out of our dog sitter's diagnosis, that we started saying that Henry must have had a temporary case of Limpus.

Here's a picture of him demonstrating a case of Limpus, although this recent instance was due to a nicked toe pad after a nail trim at the vet. No need to send get well cards just yet. He donned this wrap cast for a mere eight hours, and when it was removed, he was a good as new.

Here's hoping that neither Henry nor I have any cases of Limpus, Lippus, Luppie Lips, (or Lupus flares, for that matter) anytime soon!

Monday, April 21, 2008

I'm not a Doctor, but I play one on the Internet

For years, I've discouraged people from scouring the Internet to find out everything they need to know about Lupus. While the web is a great resource, and I regularly visit medical websites, each time I do, I'm reminded of the generic, misleading and often erroneous information that's available online.

Seven years ago, one of the first things my pulmonologist instructed me to do was to avoid looking up Lupus on the Internet. He said I would be doing myself (and him) a favor, because the information I might find would be out of date, inapplicable to my particular case, or incorrect altogether. Since then, I've learned to search cautiously, but just the other day I found myself falling prey to the information overload that can so easily happen with Internet searches.

I was looking online for a link to accompany the mention of a medical term in one of my blog entries. I naively started clicking on the results of my generic Google search, only to find some very daunting and not-so-positive stuff. I'm not ignorant when it comes to the realities and risks of having Lupus, but I do find it overwhelming to have such an enormous amount of information, statistical data and research analysis so readily available. In fact, I stopped my generic search after reading one too many horror stories, and went right to a website I knew I could rely on (see my picks for good sites below).

This kind of thing happens with almost any medical condition you look up online. A girlfriend of mine, who is also pregnant, had some muscle pain in her upper thighs. She wanted to find out if it was a typical pregnancy symptom, so she looked it up online. One of her first findings: a woman who had experienced muscle soreness in her thighs, which then moved into her stomach and eventually led to a miscarriage. You can imagine my friend's dismay when she read this. She followed up with her doctor, who dispelled the leg pain/miscarriage connection completely. He attributed the pains to the typical aches of pregnancy, and the changes that a woman's body undergoes. It doesn't mean that the story online was false - it just shows how easy it is
to make a wrong deduction.

When possible, I've found it much more valuable to get my questions answered by someone who may know me or the specifics of my disease - a physician, a pharmacist, or someone from my Lupus support group. The information I receive is then tailored to my needs and specific to the questions I've posed; I don't have to wade through all of the extraneous (and frightening) information that doesn't apply to me.

I also find the pictures illustrating some of the medical conditions I look up particularly disturbing. I don't intentionally search under Google images for these things, either. They come out of nowhere, popping up on a web page before I have chance to divert my eyes.

For example, I know how silly I looked when I was suffering from angioedema: One 1/2 of my lower or upper lip would swell to three or four times its normal size. It wouldn't have been so bad if my entire lip had grown in size - I could have played it off as a tribute to Angelina Jolie or Lisa Rinna (seen at the left). But this 1/2 lip stuff was just unbearable. And it hurt, too. When I happened upon some very icky pictures online demonstrating angioedema, it only made things worse. It didn't confirm my diagnosis, and it didn't reassure me to see other people with the same thing. It just gave me the willies. Same goes for the delightful pictures showing Lupus rashes or hives. I even looked up poison ivy one summer, searching for a good over-the-counter remedy (which I found in Zanfel, by the way), and I ran across some very nasty looking cases of P.I. Yuck!

For the most part, I try and spare you from those pictures. Perhaps you can stomach them better than I can, but I figure it's better to assume that the pictures may be a little too much for you, too. If my links do have pictures, I try to make sure they are illustrations, rather than real-life photos (except those of Angelina and Lisa - I figured you could handle those lovely ladies!) Drawings of swollen lips I can handle. The real deal? I'll take a pass.

Of course, there are some very valuable websites online, and I encourage you to use them when you are looking for additional information. My favorite and most reliable Lupus site: Lupus Foundation of America. I also can usually trust Medline Plus, an NIH website, and the Mayo Clinic website. No matter what online resource you're using, though, be prepared to sift and filter through the information. Remember - it most likely doesn't all apply to you!

Friday, April 18, 2008

The Story behind the Bun

Before I reveal the reason that Baby Bun is called Bun, let me congratulate the 20 of you who answered the question correctly. Out of a total of 32 votes, that's some pretty good guessing. And particularly impressive, when all of the answers were so undeniably persuasive.

And now here it is, the moment you've all been waiting for. The explanation as to how Bun became Bun. Drum roll please.

The reason Bun is Bun is because....

Johnny said to his family, in the midst of a heated

bread debate,

that I had a BUN IN THE OVEN!

For the three of you who were unduly swayed by the Taco Bell choice, I'm sorry I've never made my fast-food preferences more widely known. Chalupas, MexiMelts, and Nacho Bellgrandes just aren't my thing. For all I know, they don't even carry those items anymore. The last time I placed an order for TB's Cinnamon Twists, I was wearing a Swatch watch, pegged jeans, and two layers of different colored socks scrunched down around my ankles. Or was I wearing Eastlands with corkscrew shoe strings and no socks? It's been so long, it's hard to remember.

Thanks for playing. Look for the next poll to come soon!

Thursday, April 17, 2008

Perfect timing!

The other night, I received a call from a friend of mine. Unfortunately, she's had a very typical experience trying to get a Lupus diagnosis; she's been sick for over a year, and yet no doctor has been able to pinpoint or confirm what it is she's suffering from. The rheumatologist she's been seeing hasn't been particularly helpful thus far, but hopefully with further testing, the diagnosis will become obvious. Perhaps then she and her doctor can begin to collaboratively manage the excruciating pain she's been enduring.

One of the topics she and I discussed was how to handle the calls regarding the results of her blood tests from the doctor's office. For anyone who's ever had blood work done, you know how unexpected it is to receive the results, especially when they are positive, over the phone. You're usually left dumbfounded and speechless, unable to do anything but nod your head through the phone and take down the information you're being told. No questions, no comments. Just intake.

My friend was asking me what kinds of questions would be appropriate to ask when the calls come. Her last encounter with a nurse, over the phone, discussing blood test results, had not been very productive. In fact, the nurse couldn't even explain the results of her tests, and seemed defensive when my friend asked for further information. The nurse acted as though my friend was over-reacting, and that's the last thing you want when you're trying to rationally discuss serious matters pertaining to your own health! We discussed at length some of the options that might have elicited a better response from the nurse, most of which I'd not thought of in some time.

The very next morning, I received a call from the nurse at my doctor's office, calling to give me the results of a blood test (a CBC) I had taken the day before. Of course, I wasn't expecting the call, much less poor results, but here I was, being told that my cell counts were low. In fact, the doctor was prescribing additional medication to try and remedy the situation. I was shocked, but because I'd just gone through the exercise with my friend the night before, I had the wherewithal to ask the appropriate questions. Rather than just nod my head and agree to whatever was being said on the other end of the phone, I got all of the answers I needed. One point for the patient!

Here's what I asked and the answers (in italics) that I received:

What does it mean to have low blood counts? It means the blood cell counts are abnormally low compared to what they should be.

Which cell counts are low? White or Red? Both

What is the medication the doctor wants to prescribe? Chromagen

What is that? A prescription-strength iron supplement.

What will it do? Replenish the cell count.

What were the ill-effects of having low blood counts? At this point the nurse had to put me on hold for about 10 seconds while she found out the answer to my question, which was: Extreme fatigue, anemia, other complications.

Wasn't iron deficiency more related to red blood cells? In this case, both cell counts are down, and ideally the medication will treat both.

Even as I bombarded the nurse with one question after another, she was neither rude nor anxious to get me off the phone. Kudos to her, and a big fat thank you to my friend for prepping me to ask all of the questions one should be prepared to ask in that exact situation!

Tuesday, April 15, 2008

The Pug - A Lupus Patient's Best Friend

It was bound to happen. Those of you who know me had to assume that if I was going to post a picture of my"baby on the way", I would find a way to post pictures of my other two babies who are already here! For those who haven't been introduced, let me present Henry Gorman, age 8, pug extraordinaire. We've had Henry since he was a baby, a mere 8 weeks old, and he's been a lovable handful ever since.

His brother, Darwin Gorman, age 7, is the nicest pug you will ever meet. Darwin (Dar or DJ for short), lives to please, just as most puppy dogs do. Sure, he has a thing for scooters, skateboards, and bicycles, but I'm telling you, this guy is nice.

Although we didn't have Darwin during some of the more critical years of my struggle with Lupus, both dogs have given me keen insight on how I should be taking care of myself in order to stay on the road to wellness. Here are just four of the lessons the pugs have taught me - valuable tips for anyone dealing with a chronic, debilitating disease with limitations and restrictions.

Four Valuable Pug Tips

1) There's no need to rush:

Take it from these guys. There is nothing in this world so pressing, so urgent, or so necessary that you should find yourself overexerted or overextended. Henry and Darwin believe that life is to be enjoyed - slowly, peacefully, and without running. They are lallygags 100% of the time - when they get out of bed, when we ask them to come downstairs, and when we take them out for walks. In fact, Henry's preferred rise and shine time is 1pm; he's pushed it to 5pm, but we try to encourage 11am. In the pugs' opinion, you should lounge when you feel like it, relax when you need to, and smell a few roses along the way. Spend a day with the pugs and you'll realize it's not a bad way to live.

2) Napping long and often is encouraged:

About 3 years after I was diagnosed, I realized I needed to start taking a nap in the middle of each day. At first I was pretty excited about it. I knew that if I stopped down from 4-6pm each day and rested, I would be refueled enough to make it through the evening without collapsing. If I didn't nap, come 5:30pm or 6pm, I was a complete zombie and could barely make it through dinner, much less any evening activity. After awhile, though, the allure of the "recharge" wore off, and I began to resent the fact that I had to nap every day in order to function normally. That's when Henry turned on this charm, and became my little nap time cheerleader. He relished our naps together, and would come to me each afternoon, begging me to snuggle up with him in bed. I would feel guilty if I deprived him of the pleasure, and the responsibility I felt to appease him replaced any bitterness I felt toward the act of napping to begin with.

Henry and Darwin have traded places, and it's now Darwin who is my faithful napping companion. Where I used to feel like I was missing something during the 2 hours I took for myself, I now look forward to a little together time when Pug and Mom can rest, relax, and recharge.

3) Make life as easy as possible:

At all costs, I used to avoid taking the easy way out. I'd always choose to push through my pain and suffering in order to accomplish whatever task was at hand. I thought that was the only way things got done, but Henry taught me that life doesn't have to be so hard.

When we moved into our last house, we purchased a new queen bed that Henry couldn't jump onto by himself. Truth is, he could probably do it, but because it was easier for him to whine and pout until we helped him onto the bed, he refused to jump on his own. At the time, I had horrific chest pain, joint pain and swelling, so much so that I could barely bend over to pick him up and bring him onto the bed. Because I was in bed a lot back then, this became a real problem. Taking a cue from my pug, I thought, "What would Henry do in this situation?" I decided he would make life as easy as possible on himself, so I did the same. I bought an ottoman that he could use to catapult himself onto the bed and it worked like a dream! Henry could come and go as he pleased, and I could avoid a lot of unnecessary pain each time he did.

Had I not considered an easier way to do things, I would have continued to endure the pain of bending over and bringing him up, simply because I thought that's what I had to do. Had Henry not set such a fine example for me to follow, I might not have ever considered a better solution.

Henry has since decided that once he's on the ottoman, one of us needs to reach down and help him onto the bed. Always thinking of others, aren't you, little guy?

4) Don't hesitate to ask for help:

Because the boys tend to wake up in the middle of the night and need a drink of water, we've placed a water bowl in the bathroom off of our master bedroom. Johnny and I do our best to fill up the bowl before going to bed, but every once in awhile, we forget. When Henry wakes up in the middle of the night and it's empty, he doesn't hesitate to ask someone to come to the rescue. His first attempt to get help is to tip the empty, plastic water bowl over with his paw so that it topples over and clanks, clanks, clanks against the tile floor. It's a wonderful sound to hear in the middle of the night, I can assure you, but most of the time, it gets our attention. However, if neither of his parents come running fast enough, Henry comes out of the bathroom, looks up like, "Uh, Helloooo. Didn't you hear the empty bowl clanking on the floor?" and gives a bark or two. If this still doesn't arouse us in the time he deems appropriate, he heads to the door stopper attached to the wall, and gives it a couple of "boing, boing, boings" to make sure we know he's in desperate need of water. Poor guy. Maybe he shouldn't head to the salt lick so soon before bed.

I was the exact opposite. I NEVER asked for help, and avoided doing so whenever possible. Henry reminded me that there are people in this world who are very willing to help, if you simply ask. I'm slowly perfecting the art of asking, so my advice to you is as follows:

If someone offers to run an errand for you, let them. If it would alleviate your pain and fatigue to ask someone to finish up a project for you at work, do it. If delegating the dish washing, the laundry or any other household task helps you to feel even momentarily better, don't hesitate to do so. Asking for help isn't something to be embarrassed about; you should be proud that you can be resourceful and responsible, all in the name of good health.

There you have it. Deep thoughts from Pugs 1 and 2. If you generally enjoy pug humor (though it doesn't necessarily have to be mine), check out the book link at the side of my blog for The Juggling Pug. This book is sure to bring a smile to any pug lover's face.

Monday, April 14, 2008

Test your Lupus Lingo skills

There are a ton of medical terms and vocabulary words associated with Lupus, many of which I didn't know before I was diagnosed. Try matching up the Lupus words at the top with the correct definitions at the bottom. Some words you might know or have read about in my blog. Others might require you to use your little gray cells!

1. Alopecia
2. Synovitis
3. Nephrology
4. Urticaria
5. Flare
6. Angioedema
7. Rheumatology
8. Malar
9. Auto-Immune
10. Pulmonology
11. Inflammation
12. Raynaud's Phenomenon
13. Immunosuppression
14. Pericarditis

a. Term that means active Lupus
b. Study of the respiratory system
c. Fingers turning colors in the cold
d. Butterfly rash
e. Loss of Hair
f. Lowering the body's immune response
g. Inflammation of heart lining
h. Anti-inflammatory medication
i. Swelling, typically around nose and lips
j. Hives
k. Study of the kidneys
l. Body's immune response against its own cells
m. Inflammation of joint membrane
n. In Latin, "set on fire"
o. Study of arthritic diseases

1-e; 2-m; 3-k; 4-j; 5-a; 6-i; 7-o; 8-d; 9-l; 10-b; 11-n; 12-c; 13-f; 14-g; 15-h

0-5 correct; Not too bad. There were some tricky ones in there.
6-10 correct; Way to go. You're well on your way to being able to talk the talk.
11 or more correct; Congratulations! You've practically mastered the Lupus language.

How did you do? Take a minute to let me know by clicking on the comment button below!

Friday, April 11, 2008

What does Lupus look like?

Well, that depends.

There were times when I'd lost almost all my hair, had "moonface" and bruises up and down my legs because of the high dose of prednisone I was on, and had lost so much weight I was mere skin and bones. At other times, my face had a healthy glow, I was well-nourished, and I didn't look as though I had a sickly bone in my body. I probably felt worse on those days when my skin was glowing, but that's the tricky part of Lupus. What's happening on the outside may not have any correlation to what's taking place on the inside.

This is a major concern for Lupites - the idea of being sick, but not looking it. Many days, the pain and anguish you're carting around in every joint, muscle, and organ isn't visible to those around you, making it appear that you're not even sick.

I recall one morning at church when I turned to shake hands with a gentleman sitting behind me. I reached out my hand to his, and as he gave me a hearty, welcoming handshake, I instantly burst into tears. It felt as though he had crushed my pained, arthritic hand into a million pieces. I slumped into the pew, just holding my hand, wondering a) was my hand broken (in like, ten million places), and b) how could there be such a disconnect between my healthy, robust, twenty something facade and the delicate, feeble, arthritic-ridden body I possessed? The man was so bewildered and began apologizing profusely, but my husband and I reassured him he'd done nothing wrong.

The other side of the coin can be just as frustrating: undergoing drastic changes in your appearance, but not being able to do anything about it. Lupus patients have been known to gain weight from medicine, or lose weight from loss of appetite. They might have rashes, hives, or acne, and their joints could be red, swollen, and look deformed. They may suffer from hair loss, fingers turning colors in the cold (Raynaud's Phenomenon) or random swelling, called angioedema, in various parts of the body.

Can patients do much to control these symptoms? Not usually.

A friend of my mother-in-law's has Lupus, and after living with it for years, she's resigned herself to having two sets of clothes in her wardrobe. One set is for the months when her disease is active and she's on prednisone, and another is for those times when she's off the medication. It's not worth fighting the inevitable weight gain, she says. Instead, she reminds herself that when she's healthy enough to get the weight off, she will.

Another friend has become somewhat of an expert applying makeup to cover up the butterfly rash that is so typical in Lupus patients. Fed up with the frustration of using standard, over-the-counter solutions, she's spent a little extra time and money to track down the best products available. It's paid off, though. Today, she knows she's doing the best she can to mask her Lupus symptom, and that's consolation enough for her.

What can be learned from these stories? The next time you find yourself judging someone because they're 15, 20, or even 30 pounds overweight, or thinking that the girl next to you in the check out line should really do something about her acne, resist the urge to do so. Instead, give them the benefit of the doubt. They may be deep in the throes of the fight of their life, against a disease that is wreaking havoc in every aspect of their life. Send them a smile instead; they'll have one less judgement to contend with, and so will you.

Thursday, April 10, 2008

Baby Bun on the Way!

That's right! I'm pregnant! After years of watching and waiting for my body to get healthy, stable, and strong, the doctor gave me the green light in October to start trying. January rolled around, and lo' and behold, Baby Bun arrived on the scene. Johnny and I are very excited, and the pugs are looking forward to the arrival of a new baby brother or sister on or around October 20th.

Having just completed my first trimester, things are going extremely well. I feel that I have the best high-risk obstetric care in the area, and we're taking the necessary precautions (daily injections, frequent blood tests, extra monitoring) to make sure Baby Bun and I stay healthy. Baby's heart beat is very strong, and legs and arms have been waving wildly at each of the three sonograms we've had thus far.

While we're not planning on finding out the baby's gender, I do have bi-weekly sonograms scheduled from week 16 through week 32. This is to monitor for potential congenital heart block in the baby caused by an SS-A Lupus antibody, ideally treated with a course of drug therapy. If we can make it through all eight ultrasounds without a slip from the technician or without peeking, than a surprise it will be.

Many people have been asking how Baby got the nickname "Bun", so I thought I'd let you take a guess. See the poll at the bottom of the site to check out the multiple choice options. Tune in next week to see if you were right!

Wednesday, April 9, 2008

Author, Author!

Have I mentioned that I'm writing a book about my experiences with Lupus?

I'm finishing up the last two chapters now, and hope to submit it to a professional editing service by mid-June. A friend of a friend turned me onto, a comprehensive service that can help me with the finer details of getting my book ready to publish. I don't know yet if I'm going to self-publish, or if I'll take a stab at the traditional publishing house route. Either way, I'd like to get the book out within the next year.

My book, working title of "Despite Lupus", focuses on overcoming the physical & emotional challenges of living with a chronic illness. I'm living proof that you can have a fulfilling, accomplished, productive life and still work within the confines of a chronic illness like Lupus. It certainly wasn't a simple task to undertake. That's why I'm writing the book: to help others navigate their way through the difficulties of the disease so that they, too, can start living well with Lupus.

In the book, I've included all the advice, wisdom, and experience that I wish I’d had during my greatest struggles with Lupus. A few of the highlights: tips on tackling the intricacies of the mental and physical limitations brought on by the disease; insight on dealing with your doctors, co-workers, and concerned friends and family members; and tricks to managing your test results, prescriptions, and myriad symptoms. I’ve pulled from valuable discussions at my monthly Lupus support group meetings, inspirational and thought-provoking books and magazines, and my own colorful experience in order to present a comprehensive and enlightening take on successfully managing life with Lupus.

Much of the information on my blog is taken directly from my book; the topics I touch on here are discussed in even greater detail there. If you like what you've read so far, just wait for the completed manuscript!

Here's an excerpt to whet your appetite:

I wish I could say that I woke up one morning, realized that I was being robbed of everything that was important to me, and made an immediate change for the better. I wish it had been that easy. Unfortunately, I can’t even tell you the exact moment when I wised up, but I can tell you why. I realized I had a choice to make, a make it or break it decision, one that was a matter of life and death. Should I continue killing myself in an effort to keep my life "on track", or shed the pride, egotism, and stubbornness compelling me to do so in order to regain a life worth living? Somehow, from beyond the sea of despair I’d fallen into, I began to see that the latter had some very enticing benefits. I went further, asking myself the following:

Was I strong enough to relinquish the power I was frantically trying to hold on to?
Was I capable of valuing myself more than I value what I do or what I can accomplish?
Was I willing to reevaluate my life in order to start the process of healing and understanding?
Do I value myself enough to try and accomplish any of the above?

The answer to all of those questions was and still is a resounding YES. Of course I’m worth it, and so are you.

'The question is not whether we will die but how we will live.'

Making the choice to live well with Lupus is a major undertaking, and I don’t assume it can be made overnight. I do know that it's possible. I have very few regrets in life, but it pains me to reflect on the time I spent selfishly and ignorantly battling Lupus. You don't have to spend one more moment making the same mistakes I did. You can learn from my experience and start living well with Lupus today.

Tuesday, April 8, 2008

Spring clean your closets, and benefit Lupus in the process!

Spring has arrived! It's time to go through your closets and get rid of all of those unwanted clothes, shoes, accessories and knick-knacks. If you have a few things to donate, check out the Lupus Foundation to schedule a free, no hassle, charitable pick up. I'm not sure if they service all areas of the nation, but it's worth a shot! (You'll have to enter your zip code and a made-up password on the login page, but it couldn't be easier.)

Monday, April 7, 2008

Prescriptions 101: My List

There's no better way to prepare for life with Lupus than by learning about it from someone who's already lived through it. At my support group meetings, I find it particularly helpful to exchange information about the medications I'm on or considering taking. With Lupus, it can be an overwhelming and daunting prospect to manage all of the drugs you have to take. With the help and knowledge from patients who have taken those same medications in the past, the experience doesn't have to be so intimidating.

In this post, I'll list the majority of medications I've taken since diagnosis. Hopefully, this will help close the gap on a few of those foreign-sounding, unknown drugs your doctor is suggesting. In future posts, I'll highlight a couple of medications at a time, detailing my experience with the drug, the dosages, side-effects, and effectiveness. I'll be sure to include feedback from members of my Lupus group who have also been on the drug.

In reviewing this list as well as my future prescription blog entries, please keep in mind three things: 1) each case of Lupus is unique and may require entirely different courses of treatment; 2) any given drug may interact with your body chemistry differently than it did mine, and 3) self-medicating is strongly discouraged. Following doctor's orders as they pertain to medications is vital for both a safe and healthy recovery.
Here's my list, minus a few antibiotics, etc:
Actonel, Bactrim, Bextra, Celebrex, CellCept, Cipro, Clindamycin, Clobetasol Gel, Darvocet, Differin, Endocet, Folic Acid, Fosamax, Hydrocortisone, Keflex, Levaquin, Mobic, Naproxen, Pepcid, Plaquenil, Prednisone, Prevacid, Prilosec, Promethazine, Pulmicort Turbuhaler, Serevent Inhaler, Vioxx, Zantac, and Zyrtec.

If you're trying to find out more about the medications you're taking, is a pretty handy website. I even purchased a copy of "The PDR: Pocket Guide to Prescription Drugs" which helped me wade through the dozens of pills I was juggling. You can buy it right here on this site.

What's still one of your best prescription drug resources, though? Your local pharmacist. I never thought I'd become personally acquainted with the person standing behind the drug counter. However, I was there so frequently, I couldn't help but strike up a relationship. In fact, there are often prescription questions that my doctor can't answer that my pharmacist is well-equipped to address. The pharmacy is open much later than my doctor's office and on weekends, so having after-hours access to someone I trust, who can answer my questions, is invaluable.

I experimented with ordering a few of my drugs online, through the provider my insurance supported. In some cases, this was a faster, more efficient, cost effective way to fill my prescriptions. While I missed the personal encounter I had every few weeks at the traditional pharmacy, I still had access to a call-in center where I could get my questions answered. If you have the option, it's definitely something to consider.

Look for future posts in the "Prescriptions 101" series on my blog. The first drugs up for review: CellCept and Prednisone.

Saturday, April 5, 2008

Changing my Tune: Learning the Benefits of a Support Group

When I was first diagnosed, I had no interest in attending a Lupus support group meeting. There was no way I was going to go sit around a table, filled with desperate, depressed, sickly people who were probably far worse off in their disease than I was. I’d read enough about the potential and far-reaching effects of Lupus; I didn’t need to see them in person. I was also fighting to stay positive and saw no benefit listening to a bunch of strangers try to convince me to feel sorry for myself or for them.

More than that, I knew if I went, I would be admitting that I was too weak to deal with Lupus on my own. I would no longer appear resilient or self-sufficient, not to others, or to myself. That sense of independence was vital to me, and I wasn’t going to do anything to endanger that freedom.

After about six months, though, to appease my family, I agreed to attend a meeting. I asked my husband and sister to accompany me, so that they could see, first hand, how out of place I was in such a group. As nervous as I was before arriving at the meeting site, the moment I walked into the room, I felt a great sense of relief. Not because I had finally arrived, but because from the looks of those gathered together, I figured we’d walked into the wrong room. The women sitting around the table appeared pleasant, lively, and put-together. There wasn’t a sick face in the group, and I remember thinking there was no way this was a congregation of people inflicted with Lupus. I was proven wrong, as a kind, well-dressed woman came forward and introduced herself as Gail, the group's coordinator. She invited us to sit down, and then asked that everyone go around the table and introduce themselves.

Each person told their story of how they were diagnosed with Lupus, and I remarked at the absence of even one sob story. These women weren’t lamenting the fact they had Lupus, they were dealing with it with panache and confidence, just the way I envisioned myself doing. The stories they told sounded like my story: a diagnosis out of the blue, total shock to their lifestyle, a struggle to make the symptoms work with their life’s plan. Listening to them talk about the very same symptoms and medical terms with which I’d grown so familiar gave me an overwhelming sense of comfort and security. In fact, everything they said made me feel understood, validated, and connected. Here was a group of ordinary, well-adjusted, accomplished people, trying to deal with the inconvenience of Lupus, just like I was. It was as if I had walked into the world’s greatest Lupus community, where everyone spoke the same language and no one had to explain themselves. Instantly, I knew I’d found a place in which I belonged.

I've now been attending a monthly support group meeting for almost 7 years. During each meeting, I'm reminded that we're normal, accomplished people first, and Lupus patients second. We talk about the trivial parts of our everyday life with the same fervor as the serious, significant aspects of Lupus. Traveling the world, competing in marathons, and finding the best new restaurants in town are just as important as discussing the latest drugs or procedures in the chronic-illness market. The topics discussed run far deeper than talk of our disease, making me feel part of a well-rounded, varied, active community of people. Oh, and by the way, we all just happen to have a chronic, debilitating disease.

Want to seek out a support group in your area? Check out the LFA website/state chapter page for more information. Click on your state's website, and then look under "Services" or "Support" for a list of groups in your area. Here's a direct link to support groups in my specific area. You'll see mine listed there - the one that meets in Alexandria, VA. Feel free to contact Gail if you're interested in attending. We'd love to have you!

If an online support group is more your style, check out Daily Strength. I've never participated in one, but an online group may be just the connection you're looking for.

Wednesday, April 2, 2008

Made in the Shade

Did you know that 50-75% of systemic Lupus patients have a photosensitivity to sunlight? I used to be in this category, and it was a real bummer. After about 20-30 minutes in the sun (even with a ton of sunscreen on), I would experience flu-like symptoms, including but not limited to fatigue, joint pain, and a slight fever. Depending on how intense my sun exposure was, I might also have swelling in my hands, knuckles and wrists. That's in addition to a sunburn and maybe a little heat rash! At the beach, I used to huddle up beneath a big umbrella, covered from head to toe in long sleeves, pants, beach towels and a big ole' floppy hat, terrified that even one inch of me would be exposed. You can understand why I might not spend my days lounging in the sun!

About a year or so ago, my photosensitivity seemed to subside, in correlation with my disease inactivity. How relieved was I to be able to enjoy the outdoors again, with no worry of going into a mini-flare! I still wear sunscreen every day, and I almost always choose shade over bright sunshine. It brought me great joy to spend almost two hours romping around in the swimming pool with my two nieces during a recent family vacation. Experiencing freedom like that reminds me why I've worked so hard to keep my disease under control.

How can you still enjoy the great outdoors without risking a flare? Try out the Columbia brand photosensitive clothing at Alex & Me Company, or pick up some Rit Sun Guard UV Protectant on Add a box to your next load of laundry, and your clothes will be UV protected for several washings. It's not a permanent solution, but it's sure to help during the sunny summer months ahead. (Be sure to follow specific instructions on the box.)

I also invested in a slew of 3/4" or full length sleeve, lightweight shirts to round out my wardrobe. Combined with cool, summery long pants, I was confident that I could at least unload my groceries from cart to car without risking too much exposure. Tack on a hat, make sure your moisturizer has SPF, and you're ready to take on the rays.

Tuesday, April 1, 2008

Another Great Link

Dr. Michelle Petri, the uber Lupus doc at Johns Hopkins, answers the big questions about Lupus in the following article. Although it's from a few years ago, the stuff she mentions is still very relevant and shouldn't be missed.

In the Beginning...

...I had chest pain - sharp, intense, terrible pain that kept me up at night. Although my primary care physician was reluctant to order chest x-rays, I insisted, as the pain had migrated to my back and side, and I struggled to sit, stand, and breath because of it. The x-rays revealed that the lining around my lungs was filled with fluid, called pleural effusion, and I'd developed a fever, swollen glands, joint pain and swelling throughout my body. I was referred to a pulmonologist, and then a rheumatologist, who both confirmed that I had SLE. I consider myself lucky, because within three weeks of getting the results of the x-rays, I had a diagnosis. Immediately my team of doctors put me on a high dose of prednisone and several other medications, but when the fluid remained, I had to have it removed two separate times, via a procedure called a thorocentisis. It took almost 6 months before I felt like my disease was even somewhat manageable. Until then, I really struggled with the concoction of medications, my limited mobility, and the adjustment to life with a chronic illness. If you're in the beginning stages of a diagnosis, don't lose heart. Life with Lupus does get better. It just takes some trial and error, a little bit of guesswork, and a whole lot of patience. The LFA website has a great series of articles geared toward the newly diagnosed. Check them out here!