November Book Group Chat: Despite Lupus and Sara herself is joining us!

[Maria]

November's book discussion will offer a special treat - the author will be joining us for the discussions!. Well, technically she'll be over at Shelfari, but I will be transferring her comments from there to here and visa versa so that no matter where you call 'home', you can still take part!

The book is "Despite Lupus: How to Live Well With Chronic Illness" by my friend Sara Gorman. It is a lupus-focused book that takes a more 'active' view of the illness rather than the medical or 'therapy' focus. You can read about her from her blog (http://despitelupus.blogspot.com/) or on our May Lupus Awareness Guest Event at MLWT Guest Blogging Event for Lupus Awareness (http://tinyurl.com/ylkvry3).

Get your book now and start getting into it. It is one of those books where you read a little, then something comes up where you have to stop and think about how it applies to you. Not a quick read, as it discusses less about the medical details of having lupus and more of how living with the changes affect our daily lives.

We'll be starting the introductions on November 1st, including Sara writing a little intro about herself and how her book tour has gone so far. She was in Seattle for their annual lupus walk to sign and speak to locals - I'm sure she's been asked some good questions along the way that she can share here as well.

You can buy the book directly through her on her website or on our MLWT blog through the Powells link (www.mylifeworkstoday.com) to support our lupus Pacific NW community project, of course!

Looking forward to all of you to join us - this is a great opportunity and very generous of Sara herself~

[Maria]

Sara is just returning from vacation, so the intro will be the May Awareness interview mentioned above. Here is the text from the post:

Sara Gorman, author of Despite Lupus: How to Live Well with a Chronic Illness, talks about her new book and her experiences with systemic lupus:

What is the book about?

Despite Lupus outlines the steps I've taken to regain the health and wellness I lost due to years of struggling to overcome lupus. After my diagnosis at the age of 26, I refused to admit that my busy lifestyle and indomitable attitude were exacerbating my illness. It took four years before I realized that my strategy of pushing through the pain wasn't working. In fact, it was ruining my chances for a long, productive life. Thus, I decided to stop fighting life, and start living it. I made it my top priority to start living well with my illness, doing everything I could to proactively make my life better. The book describes the steps I took to reach that goal.

Why did I decide to write the book?

Once I started seeing the physical and emotional benefits of the changes I was making - cutting back my hours at the office, postponing my plans for pregnancy to start a more aggressive drug therapy, and cutting off my hair (or what I had left of it), for example - I realized that I had a story to tell.

My life with lupus was improving and I was the one making it happen. It took a lot of patience, effort, and keen self-awareness, but it was worth it. I was suddenly enjoying life, not dreading it.

Since my diagnosis years earlier, I had been searching for a proven, proactive approach to dealing with lupus, but could never find anything. I was frustrated by the conflict of emotions I experienced - the feelings of vulnerability and desperation. I wanted to know, not only why I was experiencing these emotions, but what I could do to prevent them. Once I started to figure it out on my own, I wanted to enable others to do the same by documenting the steps I was taking to make that happen.

What is the key to living well with a chronic illness?

There are several essential steps to living well, but the most critical thing is to admit that you're worth the effort. You owe it to yourself to live well - in fact, you deserve it. For all too long, I was doing myself, my family and friends a disservice by ignoring my symptoms and pretending like lupus wasn't affecting me. My body was literally falling apart, but I tried to act as if it wasn't. Not only was I hurting myself, I was affecting those around me by not valuing myself enough to stay well.

Do I still struggle to make good decisions to live well with lupus?

You bet! Every day at 3:59pm, when I head up to my bedroom to take my 4:00pm nap, I think, "Why do I have to take a mid-day nap in order to make it through the rest of the day? No one else has to do this." But, before I get too upset about it, I realize how wonderful it is that I've figured out a way to manage my fatigue. I used to lose my entire evenings to sheer exhaustion, but not anymore. By taking a measly hour and a half out of my day to rest, I can function like a normal human being for the remainder of the day. I get my evenings back and the chance to feel normal again - which is priceless.

Feel free to stop by my website, www.despitelupus.com to read an excerpt of the book, check out a few reviews, and catch up on my blog. Hopefully, you'll like what you see! The book is $19.95 plus shipping. Feel free to email me at [e-mail] with questions. I look forward to hearing from you!

[Maria]

The discussion begins!

Sara Gorman:

"Hello and thanks for joining the discussion! I'm thrilled to be participating in the virtual book discussion of my book, "Despite Lupus", and look forward to answering any questions you might have about the book. Feel free to ask about the content, the cover, the publishing process, or any aspect of my personal experience with lupus - I'm happy to share. As mentioned above, the book is available on my website - which is www.despitelupus.com, at MLWT's blog, at several bookstores across the country, and on Amazon.com. I update the blog on my website several times a week, so feel free to stop by if you're searching for more "Despte Lupus" talk. I just recently posted a ton of reader feedback on the site (found under the menu category "Reviews and Reader Feedback"), so you can see what others are saying about the book before chiming in.

Since the book came out in May (on Amazon.com since June), I've been hitting the book touring circuit pretty hard. Each book signing has been better than the last, and it's been wonderful meeting and connecting with so many people across the country, most of whom have lupus just like me. I've had to be mindful of how many events I take on, of course. Even though I'm living well, I still have to find time to rest up and not overexert myself. Lupus is still very much a part of my daily life, but now that I have the disease under control (thanks to the steps I've taken to live better - all of which are outlined in the book), I feel like I'm the one calling the shots, not the disease. What a relief!

Having just returned from a book signing event this past weekend (the Lupus Walk in Richmond, VA. Go Richmond!!!), I'm primed and ready for your questions and anxiously await your comments. In the meantime, I'll leave you with a question that came up several times throughout the event. Here you go and thanks!

Q: What advice would you give to someone who's been diagnosed with lupus?

A: Oh man! Where should I start? Off the cuff, I'd pass on a couple pieces of advice that I learned in my lupus support group years ago, when I was newly diagnosed:

1) Allow yourself to work through those initials feelings of sadness, anger and frustration. Grieving for yourself and the life you used to have before lupus is a very natural (and I think healthy) process, something that the more seasoned members of my support group encouraged me to do.

2) Once you've allowed yourself to do this, realize that while lupus is a chronic, life altering, unexpected (and unwelcomed) change in your life, you can still live well, despite it. You have to step back and say, "Okay, I've got lupus. Now what can I do to improve my life with this disease?" Every day that you consciously decide to help your cause (take your meds as prescribed, reduce your stress, rest an extra hour or two, pass up on an outing that you know will push you beyond your limits), you'll be one step closer to living well.

It takes courage, patience and self-awareness, but you can do it. Life with lupus can improve - that's the best news out there!

[Maria]

Question for Sara:

Maria:
"Hey Sara,

I'd like to start off by asking you to describe a little more about the encouragement you received - particularly from those in your support group.

I know here in Oregon (Portland especially), support groups struggle with their low attendance and my research project confirms that one reason people choose not to go to groups is because they don't "see" themselves as "that sick". Sometimes, for us looking through our eyes, we don't realize just how sick we are because we are constantly adapting to higher levels of pain, lower levels of energy, nausea, brain fog, etc. Those on the outside, however, see us in other ways and when they try to encourage or help the person they see, we can sometimes become a little defensive, because we don't 'see' the person they are talking about.

In your adjustments, both in the past and your current ones...we are talking about lupus, after all...how did your group members encourage you to take better care of yourself, that may be of help to those who live with us?"

Sara:
"That IS a great question. It's true that the members of my support group played a large part in fueling my drive and desire to improve life with lupus, although the support and encouragement I received was definitely unexpected. If you remember in my book, I was dead set against going to a group meeting. In fact, the only reason I finally DID go was because I wanted to prove to my family that I wasn't as sick as the rest of the people in the group and that I wouldn't "fit in" at all. Boy, was I wrong! I walked in, and I WAS the sickest member of the group!

The rest of the ladies (and eventually men) had clearly worked through a lot of the issues I had yet to tackle (both physically and mentally), so from day 1, I was able to learn from their experience, wisdom, and expertise. Think about all of the medical terms, prescriptions, insurance mumbo jumbo, and general coping questions you have when you're first diagnosed - there wasn't one question I had (even if I didn't voice it in a meeting) that went unanswered. Attending those meetings was (and still is) like walking into the greatest lupus resource center in the world. You don't even have to say anything at all, and you're able to learn so much. (In fact, I just learned from one of our newer members that CellCept is now generic …a fact that relieved me of a lot of anxiety about the cost of that drug, should I have to go back on it.)

What's even more interesting is that even when there are members of the group who are ill, or struggling, you can learn from their experiences. I'll admit that seeing a few of my group mates dabble in self-medication (and either flare, have a run in with their doctor, or really struggle to get back on the wellness wagon because of it) convinced me never to go down that road. Of course, I learned from what they were doing right, too. Like slowing down at work, or asking for help, or figuring out ways to ease their pain. I don't know about you, but I assumed that at those group meetings, everyone would just fawn over me...asking me all kinds of questions and forcing me to participate. Not the case at all! Like I said, you don't have to say a word...and you're able to figure out so many new ways to deal with the disease. I remember when I was really struggling with the decision to approach my HR director about making some accommodations at work. I don't think anyone in the group knew I was grappling with the decision, but all I needed to hear was one woman after another mentioning, almost in passing, how much better they felt once they took some time off, or stopped working overtime, or took a nap during their lunch break. All it took was knowing that:

a) someone else had been up against the same issue,
b) there were solutions that were acceptable in many companies, and
c) I wasn't crazy for initially resisting the idea and/or eventually acting upon it.

Once you realize that you don't have to reinvent the wheel, life with lupus gets a whole lot easier. Same goes with medications, symptoms, side-effects, etc. There are literally thousands of people out there, participating in support groups right now, who have experienced the exact same things you are. Wondering why your body won't let you get off prednisone? Wishing that you knew which drug is contributing to your hair loss? Toss a question like that out at a group meeting, and you'll get the answers you've been searching for. They may not be the most scientific of explanations (although we have a few group members who definitely have the technical details down pat), but you'll hear real life, actual applications from people who can draw from their experience and share the information in such a way that you instantly feel empowered...as if you've just been armed with vital, top-secret information that's going to help you triumph over lupus. It's as if you become more mentally and physically capable of dealing with lupus when you have the knowledge of a roomful of people at your disposal.

As far as actual advice from my group - I'd be writing three days from now if I jotted down everything I'd learned! Here are just a couple that stick out in my mind...

1) Eliminate "should": This one is in my book, but it's just so important it deserves to be highlighted. When my girlfriend mentioned this during a group meeting...it wasn't like I went home and tallied up all of the things I thought I "should" do and then struck them from my to-do list. It was more like, indirectly, she gave me the strength and courage to tell myself over and over and over again that I didn't HAVE to do anything. That it was okay to let something slide. That I could give myself permission not to do something. I could let a project go unfinished if I needed to, or even avoid starting one at all!

2) Control comes in all forms: I mention the notion of control in my book, too - but in talking with my support group members just recently, I realized that my need to control crops up in many different ways. For example, when I'm stuck on figuring out why I'm so hung up on an issue (e.g. wanting to be on the exact same dosage of meds that I was on pre-pregnancy), it’s hard for me to see that it has nothing to do with disease activity, side-effects, or anything concrete. It's just me wanting to control the situation and have things the way I want them. But when I step back (and toss this idea around with my group mates, for instance), it becomes clear (and appears perfectly natural) that my disease may have changed in such a way that I may need an extra dose of something in order to maintain my level of wellness. And while I'd like to think that life is exactly the way it was when I got pregnant, I now have a 13-month old running around, and believe it or not, that reality may necessitate an extra dose of prednisone. Fact is, it does. My doctor's okay with it...so I should be okay with it. And having talked it through a few weeks back after a meeting...I AM okay with it!

[Maria]

Comment for Sara from Jessica (Nov. 13th on Shelfari.com):

"I'm intrigued by your spreadsheet and tracking information. That is definitely something I struggle with these days. We have a shortage of rheumatologists in my area so my appointments can be quite far apart. Often by the time I get in with him or his nurse the symptoms that I was worried about are long gone."

Response to Jessica from Maria of MLWT (Nov. 13th on Shelfari.com):

"Hey, Jessica,

I liked that speadsheet idea, too, because I tend to like to 'see' something come of my efforts by using visual aids. Whether it is how many reps I get through in the gym or how many emails I am able to answer...I personally need to validate my time and energy. So, this spreadsheet idea got me anxious to start using one. Sara, you mention in your chapter on the Chronic Control Chart about how overwhelming the chart felt for you, too. It was fun to begin seeing the connections and learning how some simple adjustments actually did make a difference in symptoms. Using a tracking system really helped with the relationships I have with my family, who were also able to see where I was and what I needed. Since asking for help is tough for me, the chart acted like a mediator on my behalf and gave them chances in being supportive in a way they knew I needed, without having to ask me or guess.

Then, my reality hit.

I wasn't tracking reps or emails. Instead, I was tracking things that reminded me of being ill like taking the number of medications, looking at my SED rate or (and I apologize for the TMI in advance) if there was the presence or absence of foam after my potty breaks. That continual observing and dealing with my illness, rather than other things in my day, became overwhelming for me, even though I share the blessing that Sara has in very little disease activity. The thoughts of paying attention, even minimally, to the cause and effect lupus has on my daily life was a source of deep frustration. When things are out of control, it is easier to stick with it. When things are more calm, however, the last thing I find myself wanting to do is track lupus.

I think that using a tracking system at a crisis point, where the need to establish some stability in the disease, is very important. What I think I would do differently, or when I might need to use one in the future, is to focus more on the design of the chart and how I track it. I don't see myself as very creative, but adding some color, visual images and any opportunity to receive a reward of chocolate would probably help me stick with it. When it appears that my body/my lupus is getting the upper hand, I guess I want to see the "lupus" less and "myself" in the management process more. Not necessarily in gaining a sense of 'control' over lupus, but in gaining a sense of awareness and comfort in knowing that it is a give and take relationship between my body and myself...and that it doesn't have to be so scary, if you can sneak in a little fun."

Sara's Response to both (Nov. 18th on Shelfari.com):

"Good to hear all this feedback on the charting process! As you know, my spreadsheet seemed to be a real turning point for me...it allowed me to finally feel like I was doing something about the disease. It gave me clarity, a sense of control, and allowed me to communicate more clearly with my doctor, my family, and even my co-workers. I outline most of that in my book - as you've found in chapter 2. However, that's just the first half of chapter 2. The second half talks about my need to disengage from the disease...step away from my chart, and take time not to hyperfocus on the disease. As with everything, you have to find the balance between charting the course of your disease in order to help yourself, and stashing that chart in a drawer and not obsess over it in order to, you guessed it, help yourself. I just participated in a live bookclub group discussion (on Despite Lupus) last night, and much of our conversation centered around the concept of balance. Listening, learning, and becoming perceptive enough to know when you need to work at managing your life with lupus, and when you need to take a break from it.

I've heard from many readers about this idea of charting - many have taken it up as a means to help during doctor's appointments (just as you said, Jessica), others to organize their medical history for insurance purposes, and still others to allow them start making those connections that you talked about, MLWT. One woman even sent me a copy of her customized version of the chart - it looked great! She realized she needed to start documenting the symptoms she was experiencing, but wasn't into spreadsheets...so she created more of a number system to assign to the various symtpoms she was having. She said that a few days after she created it, she had an unfortunate trip to the ER, and the doctor was literally carrying around the chart she created as he consulted with other doctors to determine what the best course of treatment would be. How satisfying to know that you're really taking part! What's most important, of course, is that whatever your chart looks like, and however often (or infrequent) you keep it, it be a tool for living well.

Just as MLWT mentioned, I've found very little need to chart my disease activity today. I would hate to hyperfocus on such little activity...it would just bring me down! But, from time to time, I need to bring out the "concept" - like when I was on antibiotics while I was nursing Deirdre. I couldn't, for the life of me, remember to take those meds every 4 hours. I just couldn't do it! So I got out a piece of paper, made a little makeshift chart for the remaining days I had to take the drugs, and forced myself to do the checkmark thing in order to track the pills I was taking. It simply served as a reminder...and it worked. Guess it's just important to have the fundamentals there to draw upon when I need them."

[Maria]

Question from Maria (MLWT):

“Sara ,
I particularly liked your fifth chapter on communication. You cover some of the biggest issues when it comes to knowing the why, who, when and how's on talking with others about what it is like living with lupus . Specifically, that no one WILL know what it is like living with lupus. I know that many of us are caught between relying on family and friends (sometimes reluctantly) to help us sometimes and not wanting to burden them with something they really can't do anything about. This emotional tight-rope walking sometimes can create more trouble with others than the lupus itself, challenging even the strongest relationships.

As you continue on your book tour, and participate in other group discussions about your book, what are some of the things you are hearing from readers regarding the biggest obstacles they face in communicating and connecting with others? ”

Sara’s response:

“Communication is a key component in any relationship, so it's no surprise that when you add a chronic illness to the mix, the need to be clear, honest, and upfront becomes paramount. Of course, the presence of an illness like lupus makes it much harder to fulfill that need. We, as patients, can be foggy headed, emotionally and physically drained due to pain and frustration, and unable to articulate how we feel or what we need to feel better. Family and friends standing on the sidelines might be overcome with emotion as well - and struggle to express their concern for us in the right ways, or worry about what the future might hold now that lupus is part of it. And while both parties are totally and thoroughly affected by the interjection of the disease, I think the tendency is to try and act like it hasn't changed a thing. So when we say things the way we normally would, or a friend or family member quips back the way they always have, the meaning isn't the same, because the context has suddenly changed.

I think the most important thing is to acknowledge this fact, and in realizing that misunderstandings are going to occur, be prepared to refine your communication skills. It can be a real challenge to relearn how to talk to your spouse, a family member, or your supervisor, but once you set yourself up to do so, you allow the lines of communication to start flowing naturally again.

Not surprisingly, in talking with other lupus patients, there are some commonalities among the challenges that we all seem to face. Here's what I hear (and agree with!):

1) Allowing ourselves to feel guilty based upon the comments of others: Most of us know what we need to do to stay well. We know our bodies best - and we have a personal responsibility to do what we can to keep lupus at bay. Getting sidetracked when someone else questions/comments/disagrees with what we know is the right thing to do is a challenge...but you have to be strong, forthright, and confident that you're doing what's right, even if someone else doesn't understand that.

2) Learning when to explain and when to let it go: You alluded to this when you posed the question, which is a good one. Because people without lupus won't ever really grasp what it's like to live with the disease, you have to figure out how and when to take the time to explain. Take the issue that I just brought up in #1 - do you go to the trouble of explaining yourself in order to ease communication and win someone over, or do you just let it go and be confident that you're doing the right thing? It, of course, depends - on who it is, what the situation is, and what kind of relationship you have with that person. I chose incorrectly more than once, but after I starting to understand how and why the lines of communication were breaking down, I was able to start picking and choosing (correctly) how and when I would explain myself.

3) Trying to understand another perspective: This is tough...because when you're deep in the trenches of a chronic illness, the last thing you have time to do is stop and think about how someone else thinks. But that's exactly what you have to do (and it might give you a break from focusing on your own emotional state of affairs for awhile, which might be nice.) Taking the time to say, "Alright - why is she so angry about this situation?" or "How does he feel when I have to do X?" will allow you to see things from another perspective, and start to understand why it may be so difficult to discuss the issue.

4) Practicing the art of not assuming: We all do it. And because this disease has been thrust upon us, it makes sense for our defenses to be up. We're probably anticipating what others are thinking (pity, frustration, resentment, anger, worry), but it's important that we try not to assume that others are either feeling the way we think they should, or worse, the way we feel ourselves. It never hurts to ask for clarification - but of course, you have to remember that it might take a bit of trial and error before both parties are able to speak articulately (and honestly) about what's really going on.”

Response by Jessica:

“What you wrote in 4) really speaks to me. I defenitely have my defenses up, and that can sometimes make communication difficult since I'm 3 steps ahead in a conversation that hasn't even started!

I have a rheum. appt on Monday, and since it's a squeeze in from where I was already cancelled I know that time will be of the essence already. Am trying to not tense up about, and since I don't yet have a spreadsheet I'm using it to assist me in listing out my issues beforehand in a more coherent manner. My doctor and I are definitely still learning to communicate together.

[Maria]

G R:
"Great conversation. I'll be looking for you book soon (can't afford to buy right now). I'm celebrating 15 years of living with lupus this year. I say celebrating because when I received my diagonsis 13 years ago, I thought I was getting a death sentence. It's so good to have people recognizing that living with lupus is an option when we take good care of ourselves."

Maria:

Thanks for joining in, G R~ feels a little strange to use celebrating and lupus in the same sentence, but you have clearly found a way over the last 13 years to keep looking for ways to do it. Thanks for being an inspiration! Don't worry about having read the book - Sara is here to answer or talk about lupus, in general. Perhaps she can chat with you about your questions or thoughts now until the book is in your hand.

Sara?

[Maria]

Sara's response to G.R:

"I would be thrilled to answer any questions or comments you might have. And there's no rush to purchase a copy of the book - it will always be there. No worries! When you are ready, be sure to order from my website - www.despitelupus.com - so that I can sign a copy for you. I'd love to add a little note!

And 15 years...that's impressive!! I'm sure the prognosis back then was pretty crummy...I know that most of the literature that I could find on the subject 9 years ago was pretty dreary, too. In fact, one of my doctors asked me not to look up a single thing on the internet about lupus after I was diagnosed. He said that there was such bad, misinformation out there, he didn't want me to get sidetracked from moving forward. I followed his suggestion, and it was only about 6 months after I was diagnosed that I started doing a little research. And I was shocked! According to a lot of the info out there, we're not really supposed to be doing so well, are we? Thank goodness times have changed, and that we're able to reach out and connect like we are right now - encouraging one another and relating our stories in an effort to continue to live well, despite lupus.

It takes some effort, though - and there are some difficult, heart-wrenching decisions that have to be made along the way. But when I step back, and take a look at how good I feel today, I know I wouldn't want it any other way. Particularly when I catch a glimpse of my little 13-month old daughter - I know that everything I've done to live well has been worth it!"

[Maria]

Jessica to Sara:

"Ok, so I had my rheum appt today, and for the first time since the first appt it went well. I think having just finished the book and thinking through the section on communication and the part on doctors helped a bunch. Thank you!

So, tell us more about your book tour Sara! Sounds exciting. Where are you going?"

[Maria]

Sara's response to Jessica:

"That's great news!! Effective doctor's appointments literally leave me feeling exhilarated. I'm just so happy when my doctor and I connect on the issues brought up during the appointment...I'm sure you feel the same. And I'm so happy you were able to reference parts of the book - but don't underestimate the fact that YOU were the one in that appointment making things happen. I bet it feels so good to have done something constructive in your ever-evolving life with lupus. I consider this a major victory for all involved. :)

Re: my book tour - it's coming to a close, although it's been a great few months. Back in August, I headed to Indiana (I'm a native) for a couple of signings - one in Indianapolis and one in my hometown of Greencastle, IN. Boy, was the latter event a treat! I hadn't expected such a homecoming...but that's what growing up in a small, Indiana town will get you! In September, I traveled around the area (D.C., Virginia and Maryland) doing several events in conjunction with the Lupus Foundation, one of which was the Baltimore Lupus walk. In October, I headed out to Seattle to do their Lupus Walk, an event they call the "Mad Hatter Walk and Roll." That was great fun! A week later, I headed to Hawaii for a little R&R (but managed to do a little book promotion while I was there), and then returned to do the Richmond LFA walk. I just returned from South Bend, IN, where I did a book signing at my alma mater, the University of Notre Dame. That may have been the biggest thrill yet. When I was in school oh-so-long ago, I didn't have any idea what lupus was - in fact, I had never heard of it. But,there I was, going back to campus to educate, inform, and, just as G.R. said, CELEBRATE my life with lupus. How wonderful that I was able to return armed with the knowledge and experience that it's possible to live well, despite lupus.

I have a few things scheduled for next year - I'm heading to Ottawa, Canada to speak at the Arthritis Center (thanks to a devoted DL reader who's organizing the event with her doctor), and back to Indianapolis to participate in their annual symposium and potentially another event. Looking forward to all events!"

[Maria]

G.R. to Sara:

"The information has really changed over the years but mostly it was my own experience that lead me to believe a lupus diagnosis was the same as a death sentence. My aunt died from lupus and her life was truly miserable for the last few years. What I realize now is that she could have lived a much better life and perhaps a longer life if she'd had health insurance. The lack of insurance was a huge contributing factor to the poor quality of life that she had since treatment options that I have, simply weren't available to her. She just didn't have the out-of-pocket funds to pay for things.

When I started looking for information, there wasn't much on the internet yet but I quickly learned to look for the newest books because the older ones were so dismal and scary.

So, my question to you Sara, is: how do you keep your lupus under control while traveling? I find that traveling is one of the hardest things on my body any more and I have learned that sometimes it's just better to stay home rather than deal with a possible flare. I admire your ability to make appointments to do a book signing with the assurance that you'll be able to commit to it and perform well enough to convince people to buy your book!
Genivieve"

[Maria]

Sara's response to G.R:
"That’s a great question – and I actually started to expound on my travel limitations in my last response, but figured perhaps it would come up later in our discussions. So thank you for asking!

First, I’ll mention that when my disease was active, travel was the first thing to go. My husband and I found it particularly difficult to stay put, but it became crystal clear that every time I’d hop on a plane (or even in a car for more than an hour or two), I would flare. I think the stress, fatigue, and exertion involved in packing, commuting, traveling, etc. was just too much for my lupus-ridden body to handle. So it had to go. We cancelled vacations, postponed others, and became extremely conscious of our out-of-town commitments. I skipped a lot of trips…which stunk, but knew that staying home was the best way to keep my body stable. And during those weekends when I stayed home? I’d sleep, sleep, sleep! I’d be lucky if I made it down my driveway to get the mail, much less across the country. I realized that traveling was the last thing I needed to be doing.

But, knowing that traveling was a hobby that I really enjoyed, I had the goal of being able to work it back into my plan. I started slowly, and came up with a few fool-proof guidelines that I still adhere to today:

1) Allow a day before and after travel to recover: The day before I travel, I scale back on everything – errands, cooking, events, etc. – and the day after, I cancel all plans so that I can rest up and recover. At this point, I’m able to have a semi productive day before and after, but there were times when I would faithfully take an extra day off of work after my trip in order to make sure I could recover. It was a full day of doing nothing and it really helped.

I also take extra days during the trip to make sure I’m rested up TO travel – I found that weekend travel (like a Fri through Sun) is too much. When I can, I book a few extra days so that my travel days aren’t too close together. My husband and I used to be quite the weekend warriors (b/c a weekend getaway was a cheap, quick, nice way to vacation)…but now that we’ve determined it’s just too taxing, we opt for longer, more relaxing vacations.

I’ve had the luxury of staying with friends or family on several of my out-of-town signings…so I’ve just extended my travel plans to spend a few extra days relaxing before heading back. In fact, when I was in Indiana in August, I had three separate events…so I had to be very strategic about booking each of those with a couple of days in between, PLUS allow for time on either end to relax before traveling. It was a week and a half trip…but I felt great before, during and after!

2) Never travel during my nap time – This one can be tricky…but it’s just a limitation I’ve learned to work around. My husband, in particular, has been great about scheduling flights, departure times, or making commitments on the other end of our travels to accommodate my nap. We just know that mid-afternoons are off-limits, unless I can fit in a good rest before or after. And I’ve learned that napping in the car to and/or from an airport doesn’t count. 

And during my recent trip to South Bend, I had to make a choice between traveling during my nap or my daughter’s nap. It was just the two of us flying together, and figuring that the most important thing is that I be rested (in order to handle any of her shenanigans), I opted to fly back home right in the middle of her nap. Turned out I was right! Because I wasn’t trying to fight fatigue (or swollen joints for that matter), I was in the right frame of mind to help her power through the flight. She did great…but I know it would have been a sad scene had I tried to skip my nap!

3) Plan, plan, plan: I always consider how my travel days are going to play out – often times calling ahead to a hotel to ask for special arrangements to nap, skipping visiting time with family or friends to rest, or booking events according to my own needs in order to make sure I’m not pushing myself.

For instance – I had quite a time settling on a date and time for my recent signing at Notre Dame. I had a choice of two time slots – from 2-4pm or 3-5pm – prime hours for traffic/exposure/etc, according to the bookstore. But neither worked for my nap schedule, and since I was traveling in that same day, I knew I couldn’t skimp on my rest. Thankfully, the University was extremely flexible (booking me from 4-6pm, and moving something else around), and my aunt and uncle who hosted me for the event were very accommodating (ushering me to bed at every turn and chauffeuring me so I could rest and relax). Everything worked out – and I felt great!

Because I do have limitations, however, I have been forced to decline several events simply because I couldn’t make the travel arrangements work. It’s a bummer…but the worst thing I could do is show up for a signing (for a book about living well) and be sick! So first and foremost – I keep my health a priority.

Most importantly, because of these book signings, I’ve had the chance to realize two things:

1) Having met hundreds of people with lupus, suffering from the physical ailments of lupus, I’m reminded just how sick I used to be. These people are struggling to put one foot in front of the other, and it reminds me that not so long ago, I was, too. I’ve worked very hard to be healthy, stable and strong….I can’t ever forget that. My disease activity didn’t all of a sudden just go away – I had to work at it. Those steps I outline in my book make up the actual blueprint I used to get healthy and live well, and I have to continue to work those steps (not overextending myself, passing up on engagements here and there, etc.) in order to maintain my current state of health.

2) When I show up for these signings…it’s inevitable that someone comments on my appearance – on the fact that I look so healthy. Of course, I’m flattered, but I realize that looking and feeling well (and being able to project that wellness) is an important part of my message. I suppose if people are able to see that I’m perfectly mobile, without an ache, a pain, a fever or swollen gland, or even a tuft of hair loss, and doing what I’m doing, perhaps it’s a symbol of hope that life with lupus can get better. That life can improve…for all of us!"

[Maria]

G.R. responding to "celebrating":

"About celebrating with lupus -
Yes, it did sound strange to my own ears when I said it out loud for the first time but it has become my life philosophy.

I wasn't diagnosed for two years after lupus activated in my body so I lived through a very painful period and was basically treated like a crazy woman before I found a Dr. that would believe me. I was afraid to hold my babies because I hurt so bad I thought I might drop them. I was the bread winner so I had to go to work every day - but that's all I did. I would come home from work and fall onto the couch. Period. My husband, bless his heart, did everything around the house. Cooked, cleaned, washed the diapers, fed the kids, everything. He never once complained that I didn't do anything around the house but I still felt guilty.

When I finally received the diagnosis my rheumatologist was just horrid. It took me several months of working with my regular Dr. to find a rheuma. that I really liked. When I did, I felt like the luckiest person alive. I had to drive 4 hours each way to get to the rheuma. but it was so worth it to have someone who listened. But, still I hurt so bad that I really couldn't see a life expectancy beyond about 10 years.

A few years later, we moved, I changed jobs (less stress and travel), I was able to work on improving my life in other ways, started to exercise some, and slowly but surely things began to improve.

So, this spring it began to dawn on me...I'm watching my youngest kid play baseball - I hate baseball but I love watching him; I'm able to watch my oldest kid run cross country - watching cross country is an active sport for the spectators as you move from location to location to cheer the runners on; I'm able to teach the oldest one to drive and the younger one how to watch his temper. These are all normal, ordinary, mom activities that I didn't expect to do. I'm making a difference at work. I have volunteer projects and hobbies that I enjoy. And, people who just meet me would have absolutely no idea that I have lupus.

Tell me, how could I not celebrate that? It's living life at it's fullest with the bonus that I really, really appreciate what I have.

Genivieve"