Walking the walk

I'm going to take a quick break from posting the 4th blog entry in my "Dealing with others" series to update you on another lesson I learned, just this past week.

Things with Deirdre, my book, and life in general have been going quite well for the past few months. Yes, I had that bout of poison ivy, and yes, I experienced some joint pain after one too many days of traveling, but I bounced back very quickly and learned that the day after I travel, I need to take it easy. There's just no other way to do it. If I'm going to travel, I have to remember that I still have lupus, so I still have to take extra precautions to stay well - even if I'm healthy 99% of the time.

That said, I think I got a little cocky recently. Over the past two weeks, I've been shaving off a few minutes here and there from my afternoon nap. My nap normally runs about an hour and a half. As of late, 45 minutes was about my norm. With my babysitter here every weekday afternoon, I have plenty of time to get in those necessary respites, and yet I wasn't taking the opportunity to do so. Instead, I was running errands, catching up on book emails, and tending to personal matters. I was even running around to get gifts and groceries instead of ordering them online like I used to. I'd convinced myself that I was feeling so good, I could afford to spend the extra time to get a few things done on my to-do list.

In addition, I had started taking advantage of Deirdre's long (make that very long) morning nap from 8am - 11am to shower, exercise and then work on my book, blog, email, etc. rather than get in a few extra winks. Why should I miss an hour or two of rest when I could actually tackle a list of errands or an inbox full of messages to which I needed to reply? Cue the resurrection of my old bad habits. This is when my stubborn nature kicks in, when I decide I'm not going to let the disease dictate what I can or cannot accomplish, and where my tendency to downplay the limitations of my disease resurrects itself. But who am I kidding? Of course skimping out on rest takes a toll on my body! I've spent almost 4 years coming to the realization that a nap mid-day and the maximum amount of sleep at night will keep me healthy. I can't just undo the facts because I suddenly feel like being more productive.

Unfortunately, my body didn't just give a little nudge to say slow down (it probably did, but I was moving too fast to hear it), it gave me a big wallop of a reminder - this time in the form of another bout of mastitis, an infection from breast-feeding. Ugh!! Another nemesis! And my fifth round of it! My fever was up to 101.6, I felt fluish, experienced nausea, had a headache, the chills, and was achy all over. Oh yeah...and I was in severe pain when I tried to nurse poor Miss Deirdre. The physical signs were all there - so I called my doctor and thankfully got in to get a prescription for an antibiotic the same day. Today, I'm feeling much better, but I'm so bummed I let fatigue and stress get in the way of my health...again. Note: an infection like this is technically caused by a plugged duct, but it's been found that in a survey of breastfeeding women, it was reported that fatigue and stress were the two most frequent factors preceding their mastitis, and one of the known causes of a bout of mastitis is when your resistance to infection is lowered. Oops. That's me all over the place.

But the good news is that I think I've learned my lesson. When my dad heard about my recent weeks of nap-skipping, and he shared with me the following:

Don't let knowledge of the path take the place for actually walking it.

Hmmm. And the phrase, "Path to Wellness" is sprinkled all over my book. Guess I better start walking the walk.

Dealing with others: your sensitivity

Here's another reason that dealing with others can be a challenge when you're trying to manage a life with lupus, taken from my book, Despite Lupus:

2) You may be more sensitive

The magnitude of what you’re grappling with goes far beyond what those around you can see on the surface. The mental and emotional strings attached to what you do (or don’t do) are as good as invisible. With every suggestion they make, urging you to slow down, you see sharp scissors carelessly waving in the wind. Where they see easy adjustments, you see your life being ripped apart. Not only do you feel that your abilities are being tested, but so are your feelings of adequacy and worthiness. What good are you if you can’t accomplish the things you think you should? Being asked not to work so hard or do so much is like being told to break off a chunk of who you are and flush it down the drain. It seems ludicrous to you, and it probably feels like harassment.

Realize you are more emotionally vulnerable than you were before lupus, perhaps more than you’ve ever been before. Managing your emerging sensitivity is a learning process that cannot be accomplished overnight. You may make mistakes in the way you respond to comments and suggestions and that’s okay. For now, try to field those frustrating comments one at a time and know that the longer you’re on the path to wellness, the better you will become at deflecting those suggestions that infuriate you.

Dealing with others: your optimism

As awkward as you may find it to engage others in your healing process, those around you may be just as out of practice at being embraced. It may be difficult for them to figure out how best to demonstrate their care and concern toward you. In fact, their inherent compassion may not be conveyed in the way they intend or in the fashion that you would prefer. It’s challenging to reconcile the new aspects of your relationship, so it’s important to consider the reasons why this adjustment period is difficult. Here's reason #1 (taken from my book, Despite Lupus) that we, as Lupites, might find it hard to see eye to eye with those around us:

1) Your optimism may be misinterpreted

To begin with, you may feel that your friends and family don’t willingly share your optimistic attitude. You interpret their hesitancy to back your “full steam ahead” attitude as skepticism. Don’t they think you can kick this thing? Are they doubtful of your ability, your strength and your willingness to fight for what you want? You detect their concerned reluctance and immediately get defensive. Why can’t they see that you’re attempting to rise above, rather than wallow in the pain? You refuse to be like so many others stricken with illness: the complainers and the hypochondriacs. You will not become one of those people, but your loved ones’ apprehensions are making it more difficult for you to do so. They keep haranguing you to slow down, call the doctor, or let the laundry go. What they don’t understand is that their suggestions sound more like criticism than encouragement. Their admonishments take on a condescending tone, making you fully aware of the lack of trust they have in you. Every time they say, “Don’t overdo,” it feels like a slap in the face, a direct attack on your ability to manage your own life and health. Instead of empowering you to make a good, healthful decision, their implications squash any sense of empowerment or support you might have hoped to glean from them.

"To assume that people have within themselves the capacity to decide what is best for them is a vote of confidence."

Thus, you need to teach them to express their concern without infuriating you even more. You must show them how it feels when they attempt to “help” because they may not know the damage they are causing. Explain the negative effect their words have on you and suggest ways they can express their concern that are more encouraging to you. Remember, their advice to take it easy is justified; you’re simply asking them to finesse the delivery of their message so that you’re not too offended to listen.

Dealing with others...oh, the challenge

On the heels of my sister's fabulous guest post on Friday, demonstrating what it's like to be a sibling (and caregiver) of a Lupite, I figure it's a good time to mention two caregiving articles that I recently came across.

One talks about a young husband and wife, working together to battle her four chronic illnesses - celiac disease, thyroid disorder, primary ciliary dyskinesia and bronchiectasis. The article, titled "Living with and Loving an Ailing Spouse", discusses the adjustments they've made in their relationship - sharing household duties, readjusting when she's not feeling up to her part, and his specific efforts to tackle special dietary cooking and learning a sort of physical therapy to help clear her lungs. A touching story that reminded me of the accommodations Johnny and I have made over the years to in order to make our life with Lupus work.

In the second article, a husband talks about the ways he's learned to cope with his wife's chronic depression - writing his feelings down, taking a break when he's feeling overwhelmed, and extending a tender loving hand - among other things. During a particularly tumultuous time in her disease activity, he talks about being called into his boss' office, where she says, "I understand you're going through a tough season...would you tell me about it?" Reluctantly, he starts to describe his wife's illness. His boss says, "No, I don't mean [your wife.] I mean you. When someone is sick, everyone in the family suffers. Tell me about you."

How true this is. A chronic illness doesn't just affect the person who has it. Everyone involved has to learn to deal with the disease, and with the person who has it, both of which are challenging. And as the person suffering from a chronic illness, I can tell you that dealing with others isn't always easy.

While I wish I could say that Johnny and I never struggled, there were times when I know we weren't handling the effects of Lupus the right way. For instance, Johnny and I used to play off one another's optimism, neither of us wanting to admit that I was really sick. Both of us were holding out, trying to be the positive influence in a very dire situation. I think each of us was hoping that the other would be the one to say, "Enough is enough." Eventually, we were able to make this conclusion together, but I think we'd both agree it was a decision that was long overdue.

And although you'd never know it today, my sister and I shed many a tear during my toughest years with Lupus, due to our differing approaches to my disease. As a concerned big sister, she, of course, wanted me to avoid engaging in any activity that might flare my disease. Her concern, while well-intended, made me feel confined and restricted. The more I tried to push my own limits to maintain my sanity, she was there to try to clip my wings for safety. Neither of us were wrong, but we both had to learn to modify our approach in order to make the relationship work. It took time, but it was worth it.

Over the next few posts, I'll highlight points from my book that you can keep in mind as you try and deal with those around you.

To find out more about the articles I cited above, see the links below:
Health Monitor. com, article: Living with and Loving an Ailing Spouse by Margaret Dick
A Tender Touch by John Sherrill (as found in Guideposts Magazine)

Instant feedback from someone who knows!

After reading my post on Wednesday about choosing wellness, my sister wrote the response found below. She originally intended to post it as a comment, but after reading it, I asked if I could use it as a guest post. It's beautifully written, and does a great job of explaining what it's like to live with Lupus from the perspective of a caregiver. Here's hoping she makes a guest appearance again soon. Enjoy!

***

Sara's entry on Wednesday really hit home for me. As the sister of a Lupus Lady, I can honestly say that the biggest gift she's ever given me is the gift of her health. This gift, as the saying goes, is one that keeps on giving. (Even more than a Jelly of the Month Club Membership, believe it or not!)

Here is how her gift has enhanced my life:

1) I don't have to live in fear anymore about whether or not she is going to live to see her next birthday.


2) I don't have to nag her constantly to take care of herself. She is now in control, not of Lupus, per se, but rather of making rational decisions; therefore, I am relieved of that fruitless effort of wanting to control her health and well-being.


3) I am no longer afraid of what the next day might bring regarding her sickness. For example, I don't brace myself for a sudden trip to the emergency room because she's tried to "tough it out." I have total faith in her that she's doing her best to maintain good health.


4) I can now just love her as my sister and my best friend, without feeling resentful or upset with her. (Although, I guess we do still have our moments-ha ha :))

5) I feel like I can breathe freely again, knowing that even if her symptoms do return, she will listen to them and do everything in her power to avert a catastrophic illness due to Lupus.

Cold Feet: don't second guess wellness!

Many of life's decisions cause us to have second thoughts.

For example, a friend of mine is starting her own business. She's knee-deep in the process right now - juggling the initial costs of incorporating, marketing, accounting, legal, etc. She's done all the research and knows that her new venture is worth the investment of both her time and money, but she's second-guessing herself. Is she ready? Will she enjoy working on her own? How will she build her client base? Will her business succeed in this economy? She's working hard not to psyche herself out before she gets started - but it's tough.

I'm finding the same to be true with my book. I'm so close to publishing Despite Lupus, but as I'm nearing the finish line, it's hard to wonder if I'm doing the right thing. Will I be happy with the final product? Will anyone read it (other than Deirdre's grandmothers)? Will I ever make up my initial investment? When I have waves of doubt, I usually try to remind myself why I started writing the book in the first place - and that keeps me moving forward.

Second thoughts like these also carry over into our decision to live well. I remember having such difficulty with the decision to retire from a job that was taking an unnecessary toll on my health. Sure, retirement had the potential to improve my well-being and make my life much fuller - but what about the lost salary, the lack of responsibility or the missed opportunities to contribute? Would I ever be able to re-enter the workforce? I knew in my heart that retirement was the right thing to do, but my mind was creating obstacles that were tough to overcome.

After much debate, I chose to retire, and I have yet to regret my decision. In fact, in the two and a half years since I left my job, there hasn't been one morning when I've thought, "Man, I wish I were going to work today." It just hasn't happened. And on the early mornings when Miss Deirdre wants to see me in her office... I just think about the fact that she probably wouldn't be here had I resisted retirement. And that, I simply can't imagine!

Are you struggling to make a decision that would be good for your health? Is there an outstanding issue (money, pride, guilt, fear) that's preventing you from choosing wellness? Think of it this way - you have a responsibility to live well, an obligation to do what you can to be healthy. And not just for your own sake, but for those around you, too. The best way to provide for your family is to enable yourself to do so, both physically and emotionally. In order to do that, you have to be healthy.

Maybe you're hesitating to talk to your boss about your limitations at work or maybe you've talked about starting up a gym membership but never do. Perhaps you and your spouse have discussed hiring a babysitter one night a week but you never have. Whatever good-for-your-health decision you're grappling with - take the next few days to make it happen. You're worth it, and so is your health!

Indulge, but wisely

In last week's post, I mentioned the toll that my recent travels had taken on a few of my joints. Thankfully, I'm feeling 100% now, but I failed to mention the one thing I did to help get my body back on track. Each time I realized my joints were swelling, I made a pact with myself to cut out as much activity as possible for the following day. While I can't take a vacation day from being a mom (nor would I want to with a baby as cute as this one!), I was able to forgo a few generic activities to try and let my body rest. Here's what I didn't do:

* Exercise * Blog * Work on my book * Make dinner

What did I do? Got in an extra nap when I could and let Johnny help out with Deirdre and dinner. It paid off, too. My knuckles went back to normal and my joints felt better than ever. What a difference a day makes! (Note - after reading my last blog post, my sister made the suggestion that I "take a day off" following my travels and I was proud to be able to tell her that I already had!)

Here's a snippet from my book about how to enjoy activities without sacrificing your health:

***

Indulge, but wisely:

A friend of mine was struggling with the sacrifices that Lupus was forcing her to make, like reducing her sun exposure to little or none and restricting her activity level. She had a chance meeting with another woman who had grappled with the same things, but who had come to the following conclusion: indulging every once in awhile in an activity that is deemed “off limits” is okay if you allow yourself ample time before and after to recover. This woman happened to be an avid tennis player and it was causing her more stress and anxiety to miss out on a match than to deal with the effects of playing one. Given that her body was more fragile and prone to exhaustion with Lupus, she realized that if she took it easy the day before and after she played, she could enjoy her pastime and not put her health at risk. As long as you’re willing to compromise, you can enjoy doing just about anything.

Keep in mind that a compromise like this one should be view as an indulgence, not an invitation to develop a routine. Don’t let the thrill of the experience convince you otherwise. Just like eating a cookie on a diet, it’s not the one cookie that does you in. It’s getting a taste for it and wanting a second, if not a third.

In addition, be resourceful and open-minded when devising ways to enjoy yourself without jeopardizing your wellness. My in-laws once planned a wonderful day trip to New York City for sightseeing, shopping, lunch, a Broadway show, and dinner, complete with a limousine ride to and from the city. It required about four hours of traveling each way from where I lived – all in all too much for me to tackle in a single day. I didn’t want to miss the trip, but I couldn’t figure out a way to go without exhausting myself and running the risk of getting sick. After brainstorming with my husband and his family, we decided that my sister-in-law and I would skip the limo ride, take a train up the morning of the show, stay overnight with family in the city and leisurely make our way back via the train the next day. The scenario couldn’t have been more perfect! I would have the option to rest mid-day at my in-law’s place, crash early, sleep in the next day and still enjoy all of the festivities. I had to compromise and skip the fancy entrance and exit into NYC, but it was worth it. Exercise a little discretion, and I think you can have your cake and eat it, too!

Life with Lupus a challenge? You bet!

Before I sent my book, Despite Lupus: How to Live Well with a Chronic Illness off to be published , I decided to share a few chapters with my rheumatologist. He's been supportive every step of the way - but I don't think he knew exactly what I was up to until he started reading the text. I think he was really surprised by my story! He's as intimately familiar with the myriad symptoms I've dealt with over the years as anyone and yet, in his words, he had no idea how devastated I was by the disease. He didn't know how scared and vulnerable I felt with the diagnosis. He knew that lifestyle changes were involved, but he didn't know how difficult it was for me to make those changes. Here's hoping that the book enlightens others on the effect a disease like Lupus has on people like us!

I have a couple of theories as to why he might not have been clued into the devastation involved:

1) I tend to put on a good show. Even with my doctor, I prefer to be as bright and cheery as possible. Not because he asks me to, but because I expect myself not to show any signs of wear and tear. I find it much easier to act strong and courageous, even when I don't feel like it. I know it's not always right - but it's my default behavior. Over the years, I've been working on honesty - especially with myself.

2) I look forward to my appointments. When I'm feeling crummy, I practically count down the days from one doctor's visit to another. It's all I can do to wait until I can unleash my latest symptoms on my doctor so that he can then come up with a new plan of attack to alleviate the pain or suffering I have. It's been a long time since I've been that sick - but I imagine the show of relief on my face during past appointments could have been misconstrued as contentedness.

3) Explaining physical or emotional pain isn't easy. Even when you tell someone you're hurting, unless they've experienced the same symptoms you have, they'll never fully understand exactly what you're going through. It's not my doctor's fault (of course), it's just the way it is. Thank goodness for support groups!

The Rash is back!

My nemesis is back. Which one, you ask? That nasty, good-for-nothing rash commonly known as poison ivy. I usually refer to it as just P.I. Somehow I feel that saying the name out loud encourages the rash to run wild. Although it usually manifests into something horrendous, I'm hopeful this time. After all, there was snow on the ground less than a week ago - it's not even P.I. season!

In general, I feel like my immune system is a little rusty right now. In addition to the P.I., I've had a couple of swollen knuckles and some joint pain in my wrists over the past few weeks. None of the symptoms have lasted more than 24 hours, but it's still frustrating. I imagine it's from the traveling I've been doing. Even though the trips were filled with rest and relaxation, the actual day of travel is just tough for my body to handle. Any day I don't get in a good, solid nap, I seem to pay for it. I'm sure hauling my bags around doesn't help either.

Before Deirdre was on the scene, I could count on catching up on sleep the day before and/or after the day of travel. But 'tis not the case with baby Deirdre. Of course, she was able to sleep on the plane without any trouble so she's all ready to go. At least one of us is!

I'd like to figure out a way to make the day of travel a little more relaxing. I don't intend on cutting out travel from my repertoire anytime soon - so I need to make sure it doesn't continue to take a toll on my health. In looking back at the travel tips from my book, I know I failed on one account: Pack the day before traveling. I even write that the day of traveling is stressful enough without trying to throw a suitcase together. Pack the night before and you eliminate one major task involved with a trip. Plus, you might even be able to fit in a 30-minute catnap before heading to the airport. Instead, you'll be running around making sure you have enough underclothes packed! Check out all of my tips on travling on my previous post here.

Maybe I need to re-read my book when it comes out - seems like I could learn a thing or two!

Losing Perspective

Remember that heavenly spa treatment I wrote about last week? I forgot to mention that the subject of Lupus came up during my massage. As the massage therapist was beginning my body wrap, he pulled back my towel covering my legs and literally gasped when he saw the bruises on my thighs from the Lovenox shots I took during my pregnancy. I'd temporarily forgotten that the bruises were there, but they caught the therapist's attention immediately. I explained the reason behind the bruising and assured him that they didn't hurt at all - he should continue on with the treatment as planned. And continue he did!

However, the experience reminded me of how desensitized I can become to the effects of my illness. At times, I've become so accustomed to living with the symptoms and side-effects (e.g. the pain, suffering, swelling, or in this present case, bruising), that I forget what "normal" should look and feel like.

I remember an evening years ago when I was in the midst of a terrible flare, with agonizing joint pain so bad I was nauseous. I knew I was in sorry shape, but Johnny and I figured it was just one of those days where the disease was particularly bad - nothing I could do about it but just wait it out until my next dose of medication.

My sister, Katie, knowing I had been feeling bad all week, had offered to have Johnny and me over for dinner so that we didn't have to cook. We had previously accepted the invitation, but once the dinner hour drew near, I realized I was in no shape to leave the house. I called Katie to let her know that I just wasn't feeling up to it, and she and her husband generously offered to bring the dinner to us - the four of us would just eat at our house. (Author's note: everyone who has a chronic illness should have a devoted and loving big sister like I do - she always does what she can to make sure I don't overextend myself. This was a prime example.)

If I recall correctly, I first refused her offer, assuring her that I wasn't in that bad of shape. However, she insisted and eventually I took her up on the offer. The moment she walked in the door, she took one look at me, saw the agony I was in and declared that we were either calling my rheumatologist immediately or rushing to the nearest ER, no questions asked.

Looking back, I now remember how sick I was - my body was literally throbbing because of the pain and my face was slightly disfigured because of the swelling around my eyes, nose, and forehead (swelling that, to this day, has stumped my doctor.) I'm sure I protested calling or going anywhere, but she wouldn' t take "no" for an answer. Johnny and my brother-in-law, Kevin, sided with her, and within minutes, my sister was on the phone with my doctor who was ordering me to the ER at the hospital where he practiced. Although the actual ER experience was a nightmare (another post in and of itself), I ended up on a morphine drip, among other drugs, for the night, checking out the next morning after the pain and swelling had subsided. Johnny and Katie stayed by my bedside all night long - I'm sure they were wishing they had a little drip of their own. I don't think they slept a wink!

Moral of the story: I couldn't see how sick I was - and nor could Johnny. We were just too close to the situation. My symptoms had progressed slowly over the course of the evening and we just figured I had to tough it out. We were simply too accustomed to the terrible side-effects to take action. Thank goodness for a fresh, new perspective from Katie and her husband.

Need a reality check on how bad your symptoms are? Are you hesitating because you think you're supposed to just grin and bear it? Ask a trusted friend or family member for their take on your disease progression. You may have no idea how out of hand your disease has become - and they can give you the perspective you need to get the help you deserve. Don't forget - you're worth it!

Lupus Fundraiser, right here in Alexandria!

Here's a note from the Lupus Foundation of America, Greater Washington Area newsletter - hope you can make it!
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LFAGW is hosting two parties in celebration of the launch of our 3rd Annual Walk for Lupus Now. Please join us for food and fun at one or both events! This is a wonderful opportunity to get excited about April 18th and build enthusiasm to help us reach our $225,000 goal! You will meet other walkers, donors, team captains and the LFAGW staff. Bring your teammates, families and friends!

Monday, March 9 5:30-7:30 PM Peacock Grand Cafe
2020 K Street, NW
Washington, DC
Enjoy complimentary appetizers and happy hour specials on drinks!
AND

Tuesday, March 10 6:00-8:00 PM
Indigo Landing
One Marina Drive
Alexandria, VA
Indigo Landing will donate 15% of the night's revenue to the Walk, so come for the party and stay for dinner!

Please RSVP to walk@lupusgw.org. We look forward to seeing you there! Learn more about the walk at www.dclupuswalk.org.

It's here! Rebirth: A Leukemia Survivor's Journal...

Remember the friend I've written about in a previous post who was diagnosed with Leukemia a few years ago? Well, she came out victorious and wrote a book about it. The book has been published and is now ready for sale. Check out Deborah's book, Rebirth: A Leukemia Survivor's Journal of Healing during Chemotherapy, Bone Marrow Transplant, and Recovery by clicking here.

Here's a quick bio on my girlfriend and a little bit about her book, taken from her website:

About the author:

Rebirth is Ms. Ludwig’s first book. She has been journal writing since 1992, and when she was diagnosed with leukemia, decided that this would be her way of coping with her illness, as well as helping other cancer patients and their loved ones by sharing her experience.
During her illness, she started a blog, www.deborahludwig.blogspot.com, to keep friends and family abreast of her treatments and progress. She continues to update her blog, exploring struggles and concerns in her life, and using the lessons learned during her cancer experience as the reference point from which to resolve issues and maintain perspective.

Ms. Ludwig is an actor with credits in independent films, television, commercials, and theatre. She resides in the New York City area and is also a First Connection and Advocacy Network volunteer for the Leukemia & Lymphoma Society.

About the book:

When I was diagnosed, one of my first thoughts after ‘I’m going to die’ was that ‘I must do something positive with this experience.’ As someone who had been journal writing for eleven years, I decided that chronicling my experience then sharing it would be my way to help others. Empowering one’s self during adverse circumstances is the core message of Rebirth.
Rebirth chronicles my battle with leukemia, beginning with diagnosis, continuing through chemotherapy and bone marrow transplant, and ending during the recovery period. Medical information about leukemia is included and medical terminology is defined in layman’s terms. However, it is the emotional and spiritual journey that is the major focus of my story.

For more information, go to www.deborahludwig.com.

Don't forget Lupus Advocacy Day tomorrow!

Per my previous post , here's a quick reminder on how you can participate in this year's Lupus Advocacy Day. What can you do from home? Urge members of Congress to cosponsor the Lupus Research, Education, Awareness, Communication and Healthcare Amendments of 2007 by clicking here. You'll be asked to enter your zip code and then you can complete the form on the LFA website. It only takes a minute!

You can also send an e-card to your friends and family in order to raise awareness about Lupus. Spreading the word is always a good thing - and the LFA website makes it easy to do so. Feel free to check out LFA's blog for further information.