The Need to Belong

Whenever I meet anyone with Lupus, I always want to hear about the symptoms they've experienced. Have you had joint pain? Swelling? Have you ever had a rash or have you ever lost your hair? Do you have organ involvement? And you know what? They're just as curious to know what symptoms I've had. When it comes to our disease, I guess we want reassurance that we're not alone in our suffering. Not because we want someone to commiserate with. Rather, we want to know that we're not crazy for feeling the way we do, physically or emotionally. We want to believe that the disease isn't picking on us and we want some sign that, because someone else has made it out alive, we can, too. It gives us hope to know that no matter how bad today might be, tomorrow could be better.

I remember arriving at my rheumatologist's office for an appointment one day to find a young woman, probably in her early 30's, with her adorable, little daughter sitting in the waiting room. The woman was attractive, in good shape and had no signs of ill health at all: no apparent hair loss, skin rashes, joint pain or swelling. Not only did she stand out because the majority of Dr. R's patients are pushing 70, but she also caught my eye because, unlike me at that time, she looked like she was full of energy, happy and healthy. The question that immediately came to my mind - I wonder if she has Lupus? I found myself hoping beyond hope that she did. I wanted to know that I had the potential to have what I thought she had - a life without illness. It would be a life where I could move and walk like I used to, one where I didn't worry about my hair falling out, angioedema, or chest pain. It would be a life where I was healthy enough to have children and strong enough to take care of them. I wanted to believe that I would live long enough to bring my daughter or son to a future doctor's appointment. At that time, I was so far from experiencing any of that that it felt like I'd never get there. Ever.

I didn't speak to the woman directly, but during my appointment, I asked Dr. R about her. Unfortunately, he said that while he couldn't discuss another patient's medical history, he could tell me that the odds another patient I just happened to see in the waiting room had Lupus were very slim, given the limited number of people that have the disease in the first place. Ugh. Not the answer I wanted. But you know what? Thinking the way I did made me realize just how desperate I was to be healthy again. It was one of the first times I actually admitted to myself that life with Lupus wasn't so great. During that fleeting moment of self-reflection, I decided that maybe, sometime in the near future, I would make a change for the better. And slowly but surely, that change came about. And here I am today...

Treat yourself right!

Having just returned from a week's vacation (Deirdre's first!) to the sunny and warm west coast, I'm rested, relaxed and rejuvenated. I even fit in a spa treatment during our trip. Johnny and Deirdre had a little father-daughter time while I got massaged from head to toe. More specifically, I had a Shea Butter Body Wrap with a Honey-Avocado Foot Exfoliation. Sound indulgent? It was! It was 50 minutes of pure heaven.

Of course, there have been times in the past when my joints were too sore, tender and achy to enjoy any type of massage, but not this time. My back was a little tight from carrying Deirdre around in the sling (and from hunching over to nurse, says the massage therapist), but about 15 minutes of massage worked out any soreness that was there. The rest of the time was just cake!

Now I invite you to take some time to indulge yourself, however you see fit. Don't have the opportunity (or the desire) for a full-on body wrap? Maybe you'd prefer a manicure or a pedicure. Perhaps you'd rather indulge your taste buds with a decadent dessert or a double-dipped ice cream cone. Whatever you choose, take a few minutes this week to do something special for yourself. You may be out of practice because it's been awhile. But consider this your Living Well homework...I expect a report in the morning!

If you need motivation, here are a few shots of Deirdre taking it easy and treating herself right. If, at 4 months, she can figure it out, so can you!

Listen Up, Doc! - Tip #4

Another tip to make your visit to the doctor worthwhile, taken from my book, Despite Lupus: How to Live Well with a Chronic Illness, due out this spring.

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Tip #4 - Be Honest and Specific.

Because Lupus is not a disease that is easily treated, your doctor needs all the help he can get in order to make an accurate diagnosis. Your visits to the doctor may include a good deal of trial and error as it is, and you don’t want to complicate the matter by being vague or deceitful about the symptoms you experience. An honest and upfront approach is the only way your doctor can obtain the information he needs to make a diagnosis of your unpredictable, evasive disease. He has no choice but to analyze only those symptoms he detects at the time of your appointment or those of which you inform him. If you fail to mention the hip pain you had yesterday, the swelling in your fingers over the weekend, or the hair loss you’ve noticed in the shower, he’s not going to have a complete picture of how the disease is currently manifesting itself. No matter how embarrassed or inhibited you may feel, it’s imperative that you put those emotions aside. You need to equip your doctor with the facts in order to get results.

I remember a specific example when I had an ill placed, embarrassing rash on, you guessed it, my backside. I was reluctant to tell my doctor about it because I was self-conscious about showing him where it was and what it looked like. I was also a little afraid of hearing why it was there in the first place. I finally mustered up the courage to mention it to him, and upon seeing it, he concluded that it might be attributed to an infection in my bloodstream. I was put on both an oral and topical medication to eradicate the rash, and I quickly learned that, in the future, I might have to put pride aside in order to enable my doctor to do his job effectively.

Maybe you’re self-conscious about the fact that you’ve been self-medicating or straying from doctors orders, neither of which are productive practices. They become even more damaging, however, when you deny that you’re doing them. How is your doctor going to accurately gauge your progress (or regression) from one appointment to another if he’s under the illusion that you’re taking medication or abstaining from activities that you’re really not? It’s paramount that you be honest and upfront, not only with your doctor, but with yourself as well.

I shared a hospital room with a woman who, for three days, lied to her doctors about the fact that she was smoking. She announced to me at least twice a day that she was leaving the room to go have a cigarette and, everyday, I would overhear the convincing claims she fed her doctor, confirming that, no, she hadn’t had a cigarette since the day she was admitted. She was working against the very people who were working so hard to help her. While I don’t condone her actions, I know how easy it is to convince yourself that you’re in compliance with doctor’s orders, even when you’re not. For months, I would adamantly profess to Dr. R that I was doing everything I could to get better – following his instructions, taking my medication, staying out of the sun. What I didn’t mention were the 50 hour work weeks I was putting in, my reluctance to slow down when I felt feverish, and the vacations I continued to take even though I felt weak and sickly. He never asked those questions directly, so I never told him. Ambiguity had morphed into what is more aptly called dishonesty. It was hurting everyone involved. Allow yourself to capitalize on the expertise of your doctor by offering up all of the information you can.

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If you're just tuning in now, check out the original Listen Up, Doc! post, as well as Tips #1, #2, and #3. Enjoy!

Chronic Illness in the Workplace

Someone sent me a great article from More magazine titled "Ill in a Day's Work", about the difficulty a chronic illness can present in the workplace. Author of the article, Donna Jackson Nakazawa, begins by saying:

When a woman is diagnosed with a chronic disease like cancer, M.S. or lupus, she is often at the peak of her earning power and productivity. How do you choose between your livelihood and your life?

The article goes on to give several first-hand accounts of women struggling to balance a career with the limitations of their chronic illnesses, including the author's own story. Here are a few snippets from the article:

When [Faith Hackett, M.D.] first fell ill, she tried to continue her day-to-day work life as if nothing had changed. But as her condition worsened, "the way I looked sometimes worried people," she says. "If I was having a painful spasm, I had to hold on to the examining table. I realized that they needed me to talk about it, to explain why I was acting the way I did." Ironically, even as Hackett's condition worsened, coworkers still had trouble registering how sick she truly was. "People don't pick up that you're in excruciating pain unless you tell them directly," she says. "They may not understand that the reason you're behaving differently is because you are in agony." Often, the illnesses women face are largely invisible to casual observers, even those who know them fairly well. In fact, 96 percent of people who suffer from a chronic health problem live with an illness that has no surface manifestation -- they don't use a cane, wear a cast or appear disfigured. They seem healthy enough and, as a result, others often expect more from them than is physically possible.

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[Claire] Ganz's strategy has been to have a script that she follows when someone inquires; it helps her to feel she is in control of what people know. "If people ask, I simply tell them, 'I fell ill with an autoimmune disorder and I'm getting better,' " she says. "What I mean by that is: Even though I may not be getting better physically, I'm getting better at living with what I have."

Ganz also uses creative strategies to compensate for the effect she fears her crutches may have on clients. "I make sure that I have beautiful over-the-shoulder accessories -- purse, laptop case -- so that I don't have to struggle to carry anything when I enter a client's office," she says. And she's much more careful about which clients she accepts. Ganz says she has had to "let go of the pleaser aspect of who I am. I don't say yes to anything I don't really want to do. It's a hidden blessing to learn to let that go."

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[Michelle] Nofer is speaking openly about her illness now -- partly as a result of being interviewed several times for this article. "I really heard my own story for the first time," she says. "It rang out loud and clear how crazy it was to be working around the clock while pretending I wasn't ill -- then secretly recuperating at home, tapping away on my BlackBerry. The more I talked about how I try to cope, the more I realized I'm not coping." As she started to see the bigger picture, the pattern of her life emerged. "It suddenly seemed absurd that I have never really tried to halfway take care of myself," she says. "I realized that if I want to stay alive for my two sons, I had to break the pattern." Indeed, she sees her recent decisions -- first to come clean with colleagues, then to take a leave of absence, and finally, just this fall, to step down altogether -- "as long overdue first steps to taking care of me."

Check out the rest of the article here.

Anger Management

You'll be happy to know that Henry the Pug is settling into his routine, despite the fact that he permanently lost his eyesight about 6 weeks ago. (Here he is, enjoying the warm spell out our back porch. Of course he's not really taking in the view from his angle...but he was quite content, nonetheless.) He's getting around the house pretty well, using that smush face of his to feel for walls, doorways, bouncy seats and baby swings. He's even learning to get to his food and water bowls by himself, although he seems to prefer whimpering for a few minutes before he makes an attempt, giving his mom and dad ample opportunity to lead him there first.

Overall, I'd say that he's done a pretty good job of adjusting. While there were days that we were impatient, angry and frustrated, Henry never seemed to lose his temper. Sure, he was a little out of sorts, but he never lashed out or became aggressive in response to his new limitations. When I imagine myself in the same situation, I can just feel the frustration and anxiety building. If I had gone blind, I would be so angry about not being able to function the way I used to, even for simple things like styling my hair or picking out clothes to wear. I know I would learn to do these things, but I would definitely resent the fact that I had to figure out a new way to do them.

And that, in a nutshell, is exactly the way I felt when I had to readjust my life for Lupus. I hated the fact that I couldn't function normally. I didn't want to make accommodations for my disease and it made me angry when I was forced to do so. Not being able to close my arthritic fingers around a fork, buckle a seatbelt or work a full day were limitations that just about drove me crazy. But the fact of the matter is that, for a short period of time, I was unable to do these things, as well as many others. Were anger, resentment and frustration helping my situation? I don't think so.

I know I needed time to grieve for my losses and adjust to my new life with Lupus. But now it's easy to see that the sooner I moved on from that resentment phase, the sooner I could start figuring out solutions to the everyday obstacles I encountered. And the sooner I did that, the sooner I'd feel like a normal person again. I got there eventually - but oh, the time I wasted being mad!

So kudos to baby Henry for never letting frustration and anger slow down his adjustment period.

Is it surprising that once again, there's a lesson to be learned from Mr. Pugalito?

Lupus Advocacy Day - don't miss out!

It's back to Capitol Hill we go! That's right - Lupus Advocacy Day is upon us - giving us a chance to urge lawmakers to fund further research and pass legislation that could improve the understanding of and increase the treatment options for Lupus patients everywhere.

Lupus Advocacy Day is March 3rd, with training for participants on March 2nd. Click here to find out more about the two days of events.

Can't make it to Washington D.C.? There are two more ways to participate:

1) Become an e-advocate. Click here and complete the form provided on the LFA website.

2) Urge members of Congress to cosponsor the Lupus Research, Education, Awareness, Communication and Healthcare Amendments of 2007 by entering your zipcode here and then completing the form that follows, also found on the LFA website.

Thanks for participating!

Reactive arthritis - ever heard of it?

My husband ran across this article on pgatour.com awhile back and thought it might be of interest to me. He was right! I'd never heard of reactive arthritis before. Although the condition kept professional golfer James Nitties off the links for awhile, he was able to get the condition under control and is back at it again. Read on to find out more!

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PGATOUR.COM

What's a little arthritis at the age of 22? Not enough to stop Nitties

by Helen Ross

12/7/08

LA QUINTA, Calif. -- For three weeks in a Dallas hospital, James Nitties didn't know whether he would ever walk again, much less play golf.

Nitties was 22 at the time and had come to Texas in the summer of 2005 to visit friends. Three days into the trip, though, the young Aussie's right hip seized up and landed him in the ER where nurses gave him morphine to quell the pain. "It felt like someone stuck a screwdriver in there and was turning it," Nitties recalled.

The pain traveled to his knee, which swelled up like a soccer ball, and then to his foot. Nitties felt like a pincushion as doctors tried to determine what was wrong. Finally, a rheumatologist was called in and made the correct diagnosis -- he had reactive arthritis, a chronic condition that is characterized by a buildup of fluid in the joints. He'll always have it, but the arthritis can be controlled by medication.

Once he was discharged from the hospital, Nitties spent another month in the United States recovering. Walking was so painful, he left the door to his hotel room ajar so he didn't have to open it when room service was delivered. He was on crutches when he returned to Australia.
"I had my mate dressing me," Nitties said, shaking his head. "For a 22-year-old, it was hard. I don't want to dwell on it and make it like an excuse, but it put me out for a good year."

For those golfers who are reading along, feel free to check out the rest of the article here!

And for those who want to know more about reactive arthritis, read on:

The condition typically develops in response to an infection in another part of your body. Coming into contact with bacteria and developing an infection can trigger reactive arthritis. Though inflammation of your joints (arthritis) is a defining feature of reactive arthritis, this condition can also be associated with inflammation in parts of your body including your eyes, skin and the tube that carries urine from your bladder (urethra).

For most people, signs and symptoms of reactive arthritis come and go, eventually disappearing within 12 months. Treatments for reactive arthritis involve therapies to manage your symptoms and to eliminate any underlying infection.

Reactive arthritis is among a group of disorders known as seronegative spondyloarthropathies that can cause inflammation in the joints of the spine, legs and arms and in other parts of the body.

Treatment may include: Nonsteroidal anti-inflammatory drugs (NSAIDs), Corticosteroids, Antibiotics, and/or Tumor necrosis factor (TNF) blockers as well as physical therapy.

Doctor, Doctor!

Thanks for your contributions to the list of Great Docs! Glad to see that there are some good guys (and gals) out there to choose from. A good doctor/patient relationship is so important when you're trying to get (and keep) Lupus under control. In my opinion, it's impossible to successfully manage your disease without one!

While the goal of the Great Docs! list on this blog is to provide you with resources for fabulous health care, it's important to note that the doctor/patient relationship is a subjective one. Every doctor out there isn't a perfect match for every patient. Should you decide to follow up on a referral - make an appointment, bring an open mind and then determine for yourself if the doctor is a good match for you.

On the subject of whether or not a doctor is right for you, here's a little snippet from my book, Despite Lupus: How to live well with a Chronic Illness, due out this spring:

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Doctors are Real People, too.

Just like you and me, your doctor is only human. He has strengths and weaknesses, assets and imperfections. He’s going to have good days and bad days and because you see him as frequently as you do, you’re bound to catch him on one of each. Your doctor should conduct himself with the utmost professionalism (even on his worst day). But it’s unrealistic to expect him to overhaul his behavior simply to meet your own personal expectations. You may want more small talk and less business, a shoulder to cry on instead of a composed, unemotional handshake, or more supportive encouragement and less brutal honesty. Just because that’s what you want doesn’t mean your doctor is responsible for giving it to you. In fact, he may be incapable of relating to you in that way. If that is the case, you may need to learn to accept your doctor for his expertise and his failings, or switch doctors.

All relationships require some amount of effort, but the payoff should undoubtedly equal the energy you’re putting forth. If you spend an inordinate amount of time trying to make peace with your doctor or if the differences between the two of you are interfering with the effectiveness of your medical treatment, it may be time to switch physicians. It doesn’t matter how many shining referrals, write-ups, or reviews your doctor has to his name. You should never settle for substandard, dissatisfying or unsettling care. The most important evaluation is the one you give him, and if you’re not happy with the results, you’re entitled to try someone else. Use these questions to help you pinpoint what it is that isn’t working in your current relationship:

What are your greatest needs from a physician?
What are your expectations?
Have you brought them to his/her attention?
Is your current doctor capable or incapable of meeting those needs and expectations?
Could you help him or her do so in a more effective way than you currently are?
What are your personality strengths and weaknesses?
How might they complement or clash with those of your physician?

NOTE: Before making the big decision to leave your doctor and move on to a new one, be sure to check out my tips on how to make your doctor/patient relationship (and your appointments) more effective. You might be able to salvage the relationship you currently have, saving you a lot of time, money and hassle! Check out tips #1, #2 and #3 here and look for tips #4 and #5 in the near future!

Yuck!

I had a very crummy case of food poisoning recently (but when isn't food poisoning crummy?), and in the wee hours of the morning when it was making its way through my system (enough said), I had a few moments to compare a bout of food poisoning with Lupus. Here's what I came up with:

1) Thankfully, food poisoning lasts for a finite period of time. Yes, you're violently ill for a couple of hours which stinks, but at least you know it's not going to last once the culprit is out of your system. Symptoms of Lupus on the other hand can last and last and last...with no end in sight. Score one point for food poisoning.

2) You can typically pinpoint the cause of food poisoning easily. In this case, I'm a little stumped because Johnny and I ate the same things throughout the day. But since Johnny's been known to have a rock solid stomach that can tolerate almost anything, I'm pretty sure I'll be staying away from a certain Mr. Poultry for awhile. With Lupus, finding the cause of your flare isn't so easy. Sure, you might be able to blame it on too little rest, or stress, or sun exposure - but there are plenty of times when you're just sailing right along and BAM!, a Lupus flare comes out of nowhere. Score another point for the big F.P.

3) For the entire day following my F.P. bout, caring for Deirdre was no picnic. While the acute attack was over by about 7am, I was still feeling pretty spent almost 12 hours later. Her dad was a real champ and made feeding time, etc. as easy as possible on ole' Mom, but I can't imagine feeling like that day after day and having to care for a little one. The three of us spent A LOT of time lounging - which of course Dee didn't mind at all. So on the point of child rearing, I'm going to call it a tie. Neither ailment mixes well!