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MLWT Book Discussion Group

This group is for anyone living with lupus, lupus-related diseases/syndromes or other chronic illnesses looking to explore the many facets of our lives without illness taking it all away. Although we are located in the Pacific NW (Oregon, specifically), this group is open to all who are looking to live their lives on their own terms and...more »
  • Category: Health & Science | we are located in Oregon -currently Portland-Metro area | Started September 2009

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  • My Life Works Today!

    Book for February and March: Unexpected Blessings by Roxanne Black

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    It's funny how life works~ just when you think you don't need something, a little message appears reiminding you not to be so hasty.

    I was in the throes of restructuring the MLWT network, I just ran across a recommended readings list in my latest Lupus Now magazine from the Lupus Foundation of America, and was buried with personal emails, tweets and direct messages from so many patients looking to be heard. Then, I received an email from a marketing rep for Roxanne's new book - which just happended to be listed in that LFA reading list. I was not only offered a book to review, but I was offered another opportunity to learn, grow and rejoice in the spirit so many lupus patients share.

    I've decided to stretch this book out over two months, because I suspect there will be a lot to discuss as we go through it. If you are thinking that "here is yet another person talking about their lupus struggles", you are right. However, don't let that stop you from picking up this book, because you will be missing out on, not only her own stories, but stories of others living with illness and disability, some of whom will be familiar to you. She is also the founder of the Friends' Health Connection, which I just recently became acquainted with. What she started back in 1988 at the tender age of 16 reflects my own hope for MLWT. I was embarrassed to realize that what I was in the middle of building here in the Pacific Northwest had already been built on a national scale years before and I wondered how many others didn't know about it? Now, there are many networks to choose from to meet and discuss health challenges with others, but I want to bring forth the Friends' Health Connection as the wellness maverick that started it all.

    Her book has been well received by many health professionals and her writing is a pleasure to absorb. I think there will be something here for everyone. It will take us beyond lupus toward living with many different challenges, meanwhile celebrating the opportunities to connect with others on various levels of kindness.

    Please join us~ we will begin the first week of February

    My Life Works Today! started this discussion 2 years ago (edited). ( reply | permalink )

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  • Jessica M
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    Just downloaded it, and am looking forward to getting started!

    posted 2 years ago. ( permalink )
  • G R

    G R 

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    This sounds like an interesting book. I'll have to look for a copy of it.

    posted 2 years ago. ( permalink )
  • My Life Works Today!
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    I'm speaking with Roxanne on the phone tomorrow to see if she'll be able to stop by from time to time and join us in the discussion. She's already offered her support, so it looks good. :) Keep you posted~

    posted 2 years ago. ( permalink )
  • Jessica M
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    Cool! Good luck with that - I'd love to hear from her.

    posted 2 years ago. ( permalink )
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    • My Life Works Today!
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      Spoke with her on the phone yesterday - I invited her to stop by and take part if she would like. Next week, I'll be calling her again for a quick interview to post on the MLWT website. If any of you have red the book already and have any questions that you'd liek to propose to her either on the website or here without having to commit, email it to me and I'll put it out there for you.

      I'll be checking in on Monday, the 8th. If you feel up to starting things off before then, though ~ by all means, go right ahead. I'm hearing a lot of my experiences in her writing so far, as I expected I would. However, what I didn't expect was how comforting it would actually be for me. I'm anxious to hear what you are all thinking about, too.

      posted 2 years ago. ( permalink )
  • My Life Works Today!
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    Well, I was knocked on my tush by the flu last weekend and then from the colds my daughters felt like sharing. You would think that it would offer lots of reading time, but it actually meant my work took twice as long to get through. Needless to say, staying awake after the computer all day wasn't easy.

    However, I did get through the book and am ready to start stepping into it here with you. I am calling Roxanne tomorrow to do a quick intereview and am looking for some questions that you guys may want to have her address. Rather than a bio format, since the book pretty well covers that, maybe something more interactive? She is open to joining us here and I may act as the go-between. If you have anything to say, she will see it and is willing to respond. Thanks, Roxanne!

    From the interview, I'm thinking about learning more about the people she has worked with over the years - their needs, hopes, fears, etc. I'm also curious to know if she sees any change regarding lupus awareness efforts, patient profiles, medical community attitudes, etc. Also, I would like to hear what her plans/goals are for her network in this new decade.

    What are you looking for?

    After the interview, I will post it that night here and we'll start talking about what we've read, okay? If you want to jump in now, again, go for it! :)

    posted 1 year ago. ( permalink )
  • My Life Works Today!
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    As luck would have it, the interview with Roxanne will be next Thursday rather than today due to me having a cold of all colds. That extension will give us some time to get things rolling here and maybe even inspire more questions by then.

    As you have probably finished the book by now, I suspect that this will be less of an opportunity to discuss what Roxanne was going for as a writer and more about what she offers to the experiences regarding lupus, adjusting to living with illness (especially at such a young age), relationships, and life's challenges in general. I thought I would throw out some of the topics she covers and hopefully trigger some conversation as the topics are reflected in our own experiences. This will keep things as open as possible, I think, and allow tangents. Knowing me, there will definitely be some of those ;)

    So, in her introduction, she mentioned one thing that I want to start out with.

    She responded to her diagnosis similarly to how I’ve heard many others respond to their own diagnoses. She mentions in the introduction of her book that she "yearned" to connect with others who knew what she was experiencing and to read words that would “help heal and inspire” her. When I think back to my diagnosis, my doctor recommended I join a support group to help me with the news. The thing is, I found myself resisting in reaching out and meeting others with the illness. I see, now, that everyone needs to cope in their own way and that one way isn't more 'healthy' than the other. My reaction to my doctor's advice suggests that my way of facing personal challenge is to go inward initially and then to reach out once I feel grounded. With the direction she took starting up her non-profit, it shouldn't be any surprise that reaching out comes naturally for her.

    What was your diagnostic reaction or experience? Did you feel an immediate need to connect with others or did you need to settle in first? Do you still find yourself using the same way of coping or have your strategies changed to include sources and methods you never thought you would? With the internet growing as it has since Roxanne started her network, do you find yourself using the online opportunities out there or do you prefer to maintain some privacy in handling your health challenges on your own or with sticking with people close to you?

    posted 1 year ago. ( permalink )
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    • Jessica M
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      Sorry for dissapearing for a few days - life got in the way! I'd say that I do tend to reach out, more with the internet through Twitter, blogs, websites and message boards, and this book club. I'm not quite ready for the personal reaching out I guess. Part of it is the uncertainty of my dx so far. One minute he's 100% sure it's lupus, and the 6-8 months later he's calling it inflammatory arthritis but saying that it does seem to act lupus like. I understand that this is quite normal a path to go through in diagnosing an auto-immune disorder, but it does make me feel "fake" sometimes.

      I do find that Ilike the internet and some of my friendship network best for sharing than my family. I'm sure I'll get to that eventually but I share minimally right now.

      posted 1 year ago. ( permalink )
    • My Life Works Today!
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      Man, talk about life getting in the way! Yeah, my rheum told me last time I saw him that he didn't think I had lupus because I wasn't showing "typical" symptoms. All I know is that my kidneys get mad when I stop my cellcept and I guess that's all I need to know. As for sharing with family, it tends to create more drama than necessary. I guess now that I've found my place (for today, that is), I tend to prefer hanging out with people with the option to talk, but not in a group setting. In fact, that's a big reason I started this project. I think doing other things helps others see that living with an illness is just how things are for me, but not everything. Finding those people who get the ups and downs without taking it personally (e.g. family) is the real trick.

      No worries about the absences...I am completely overwhelmed right now and I read her book so quickly, it has been easy for me to get distracted with other things. Trying to get back on board before the month is out, tho, so stop by if you get a minute and thanks for being here, Jessica! :)

      posted 1 year ago. ( permalink )
    • Jessica M
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      My primary care doc now is calling what I have going on some sort of overlap syndrome. I respond to prednisone, plaquenil, and now to methotrexate so it does seem to be inflammatory at least. Many of my symptoms have mirrored lupus, but a few key ones change over to mirror RA at times, and now I seem to have very light inflammation of the lungs so it may just be a variety of symptoms she thinks without firmly falling into one category or other. It's so odd to me, but it is what it is.

      Was very glad to see you on the "group" today - and very much understand that sometimes there's just not time or energy for it. :) We can chat whenever it works!

      posted 1 year ago. ( permalink )
  • My Life Works Today!
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    Roxanne uses the word betray when she refers in her book to coming to terms with her lupus diagnosis and new life with illness. I think this frame of mind is what really signifies the difference between living with lupus and living with an illness such as cancer.

    I think the feeling of betrayal works on us differently in that we have to come to terms emotionally with how it is our own bodies that are considered 'the enemy', rather than a monster tumor or evil cell that has gone awry. Even though it still means the immune system isn't working well enough when cancer is present, thinking that it would be possible to strengthen our systems with all of the antioxidants available seems more hopeful. What do we do when we can't reason with a function that is out of control? With cancer, the term survivor seems to work better because we are fighting something we can see. With lupus, it is our own system doing the damage and fighting ourselves may feel self-abusive or blaming the vicitm types of thinking. So, does that automicatically put us into a 'vicitim' frame of mind....laying in wait for the next unintended flare up?

    Since our systems are over active in their attempts to defend our bodies and seem to lose sight of what they are really supposed to be doing, talking our systems down from the ledge in a society full of overachievement and activity seems a more formidable task. And, I think we all know how difficult it is to give ourselves a break when we see everyone around us busy and energetic. Feeling as though we (our own bodies) are letting ourselves down and are in a constant state of anticipation for the next attack does tend to lead to some pretty difficult emotions to work with, live with and express to others we share our lives with.

    Do you struggle with the sense of betrayal or do you take on the 'survivor' mode of thinking and step into battle when your lupus flares? If you are new to lupus, then you are probably still trying to figure things out - and I think Roxanne's book offers some insights in that very crucial time. If you are a veteran like I am (about a decade and counting), you may have been able to resolve the comparisons between survivor and victim. What are some of the ways you work through this comparison and what can you offer as suggestions for those still knee-deep into the process?

    And, do you agree that there are differences among various types of chronic illnesses that have emotional under currents deserving a little more exploration within health management process?

    posted 1 year ago. ( permalink )
  • My Life Works Today!
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    In the sixth chapter, entitled “Driving Lessons”, Roxanne shares her story of how she learned to drive and offers it as a familiar analogy between navigating traffic and navigating the challenges life presents to us.

    There are those of us who careen through challenge, uncertainty, obstacles and fear with tremendous belief in how things will simply work out in the end. Then, there are those of us who hold back, assess and evaluate, obsess and worry about the unknowns we are about to be facing. Typically, those two dimensions are found in us all, but we generally have a tendency to rely on one end of the action spectrum more than the other. It takes a person, situation or experience that forces us to step outside of how we tend to react and step into a new way of exploring a new path. In this chapter, Roxanne comments to her mother that she didn’t know how she could drive in such a chaotic environment, which leads her mother to call her on her uncertainty and prove to herself that she could understand, if she simply tried.

    In the end, Roxanne does successfully make her way through the lesson and as she pulls to a stop, her mom states “There,...Nothing will ever be that hard again”. This lesson in driving delivers Roxanne to discover a part of herself she may have taken many more years to find on her own, thanks to the strength and determination of her mother on that fateful day. We are often bewildered by those who show such unfettered courage to boldly go forth, as we shake our heads in disapproval of their disregard for the uncertain, and potentially threatening, fate that awaits them. Yet, we have to also admit that we are drawn to these same people with a sense of admiration and desire to be within physical range— in case their courage might somehow rub off on us.

    For myself, I had a person provide me with a challenge to climb behind the wheel. And, as it was with Roxanne, I didn’t initially see this opportunity as the gift it eventually came to be.

    Before I knew I had lupus, I spent four months of excruciating pain and numerous red blotches all over my body, when my husband learned that he had finally made partner in his law firm. Since I knew he was experiencing a great deal of stress in wondering about his future there, I dismissed his hurtful comments about how I was “looking for attention” or bringing him “down” at a time when he was supposed to be happy for achieving this career goal. However, on one particular evening, as I sat on the stairs trying to mentally prepare for the climb up towards the bedroom, knowing that the pain in doing so would leave me at the landing in tears, my husband made his way upstairs for the night as well. He stepped over my huddled body, turned and looked down at me and asked “When are you going to get over yourself?” Not waiting for me to answer, he left me sitting there, as he had done for the last four months, without offering me a steady hand, loving encouragement, or reassurance that my suffering mattered to him at all.

    That moment, for me, was like a slap of reality that is often given to someone experiencing hysteria. I realized that I was not only sitting on those stairs trying to make it up to bed, but I was also trying to make it up the stairs to end another day of both physical and emotional pain that was due to repeat itself within eight hours. My tears weren’t just for the fear of the pain, but of the fear that I had stepped farther away from the person who deserved to be cared about and loved. Within a week, he left the marriage to seek the “fulfillment [he] deserved, but would never have by staying” with me. I never again sat on those stairs and cried in preparation for the climb. I have also been free of that crippling pain since his departure.
    I now climb all stairs with the appreciation for what every single step can mean for me.

    In retrospect, my now ex-husband wasn’t someone whom I admired for his courage. I now understand that I was the strong one all along. Without his faults, however, I know it would’ve taken me much longer to come to appreciating what I could endure, aspire to and love about myself.

    Is there someone in your life, past or present, who you feel, out of sheer inspiration (or, as in my case, flagrant apathy), was instrumental in pushing you towards learning more about yourself – becoming more bold or learning to pace more conservatively? How about life aside from illness and just in general? Do you still seek this individual for their qualities or have you developed, just as Roxanne did, a new sense of your own personal style in tackling the chaos that life throws at you? Do you feel as though you could now be that person who could inspire someone else?

    I bet you are.

    posted 1 year ago. ( permalink )
  • Jessica M
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    I hope I'm a person who could inspire someone else - i'm working toward that I guess. And Right now I'm hugging the you that was sitting on those steps as he went over you. I find it interesting that your pain changed once he left too - I'm still learning (over and over again) how situations that cause me strress or discomfort whether emotional or physical can affect my pain and illness levels.

    Anyway, i'm not sure that i've had that person or situation yet that's pushed me really outside my boundaries, but i've had small moments all along that help. I do find that i'm somewhat grateful that my partner has chronic illness issues as well so that I know that he supports me, but also understands what i'm going through - maybe not exactly,b ut we've both been in those weak or vulnerable points wheter they be automimmune related or in his case kidney related. I wish neither of us had those experiences but I do think that it has allowed us to be the people we are at the same time, and understand our strengths, as well as have compassion for one another's weaknesses.

    Anyway, glad that this has been a 2 month discussable - my apologies for not showing up or discussing much but I'm still digesting it a bit in my head, and am also in the midst of packing and prepping - my boyfriend and I just bought a house together and move at the end of the month. I'm trying to do a few boxes of packing a night so that I don't have a rush at the end. I'm also trying to find a renter for the house I currently own so learning the intricacies of landlord life and such. :)

    How are you feeling with your flu these days? Hope all is on the mend and you're well!

    posted 1 year ago. ( permalink )
  • My Life Works Today!
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    Catching up...congrats on the move! And I can see where being with someone who can at least get the gist of not feeling the way you want must be a big support. I know that trying not to be sick (and to keep the challenges from burdening my already stessful marriage and two littel girls) was the worst thing...is the worst thing...I can do to myself. You are so right - acknowledging our strengths really helps when we have to face our vulnerabilities. Even though the lessons are repeated, I still have to learn that one over each time I go through my 'cycle'.

    I think the way this book is written is one that you just have to digest over time - little snippets of thoughts that she shares may not be exactly what we experience that particular moment, but there is enough similarity to always find something to think about eventually. I suppose that can be both a positive and a negative, huh?

    Flu is gone, allergies are here, but being kind to me. Best wishes for the packing - I know how grueling that can be. I'll be hanging out here - maybe throw in a few thoughts and if you get around to them, that's great. I may have to step aside from the book discussions until the Fall because I have huge projects coming due. I really wanted to read Little Bee, tho...should we go for one more for April and May or have you already read it? Let me know and take things easy - both of you! :)

    posted 1 year ago. ( permalink )
  • Jessica M
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    I'm up for another book if you are, or I'll understand if things are too crazy....... is it Little Bee by Chris Cleave? I'm certainly intrigued.

    I think this is definitely a book to come back to mentally on occasion. The thought actually popped into my head to day when I was thinking of this book "Life isn't always what you expect of it, but it certainly is what you make of it". I think Roxanne's tale is a lot of what she made of it and continues to - it's certainly inspiring.

    I'm glad you're feeling a bit better. I'm ready for allergy season to be over, but it's certainly treating me better than others I know.

    Packing is going well enough, but although I'd planned a big packing night tonight I came home, crawled into bed, and slept for 3 hours. Guess my body thought differently. Was a good sleep, so hoping tomorrow is a good day.

    posted 1 year ago. ( permalink )
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    • My Life Works Today!
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      So, I figured you were busy with your move - may still be - so I haven't been back here. I'm putting up the next book today and my goal is to get through it by May. I'm beginning some trainings that I suspect are going to consume my life even more. They are necessary evils, though.
      That quote frolm Roxanne has been dead on for me the last few months. Actually, since I started reading her book! lol Go figure!

      I hear you about the allergies..of course, we're getting snow this week. It's crazy everywhere and just a little more consistency would make me a happy camper at this point.

      Hope the transition went/is going well! I'll get the new thread up now~ :)

      posted 1 year ago. ( permalink )
  • Jessica M
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    Am pretty busy with the move - hoping to spend the night in the new house tomorrow night. Not getting much done today between waiting for the blinds measurer and going for pulmonology testing - that was interesting to my nerdy side. I apparently have strong lungs, and the tech thought that 95% of the pulmonologists would say that i don't have asthma, but the others might say that I have very very very mild asthma so i guess we wait for someone to read my results.

    Hope you stay warm in your snow. We've got beautiful weather this week for moving at least. i'll check back in when I've got internet set up at the house.

    posted 1 year ago. ( permalink )
  • My Life Works Today!
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    The last couple of months have been an amazing ride for me, even though it really put this book discussion on the back burner. I’m still reeling from all of the activity and see what’s coming down the pike, but I took a moment this weekend to return to Roxanne’s book and re-read her thoughts on synchronicity (Chapter Nine.) She begins with Einstein’s quote on living life as each moment as either being, or not being, a miracle. As she chooses to see every moment as being a miracle, I realized that I see them more as opportunityies and that sometimes gets me into a lot of trouble.

    I tend to go through my days footloose and “open” to experiences, because I always want to be on the receiving end of something wonderful. I fear that if I close myself off too much or remain too strict to a schedule, I’ll lock myself away to chances that life is known to throw at us. The problem, however, is that I find myself going through days bouncing from one promising opportunity to another, but leaving behind hundreds of loose ends and a to-do list that ultimately sends me into stress-induced flares. Even when I try to find that middle ground, I worry that I’ll miss something important if I don’t follow it.

    I am working on certain themes right now, both in services and research, pertaining to living with chronic illness, and one of those themes is in the process of therapeutic storytelling. This particular method is especially powerful for book lovers and offers them not only a chance to practice what they are passionate about, but also gives them an opportunity to develop a stronger appreciation for how their lives have evolved following their first signs of illness. For many, it isn’t really the point of diagnosis that begins the journey, but rather the circumstances that occur once the first signs of physical changes arise. Those are important to recognize and to document those circumstances, which can be key in managing one’s illness. Those circumstances may very well be important triggers that we want to work towards minimizing, in order to avoid any future flares.

    The type of comment her cousin made when summing up his life is a frequent comment I hear when I work with others or even when I take some time to catch up with myself. Living with an illness can often keep us into the moment, because we are looking for some sense of control. If we mange our days, we manage our lupus, right? Yet, doing that day in and day out can create a very narrow focus on our lives, leading us rather than allowing us to experience and treasure some pretty significant moments or seeing the big story. Roxanne brings home the point that paying attention to moments as gifts rather than opportunities gives us necessary emotional or spiritual support that is just as vital in our self-care. Instead of simply feeding the control monsters within ourselves, we need to also feed the daughter, mother, friend, artist, chef, gardener, and so forth. I think that is why I’m struggling, personally.

    I insist on remaining open to anything that comes, believing that synchronicity is powerful and, if invited, can lead me to experiences I’ve never even considered possible. However, I think my openness has caused more chaos and worry, secretly feeding my control monster. I have that huge to-do list probably because I’m still searching for an emotional connection to those moments. I’m not open to all— I’m desperately seeking a few key emotional things I need, yet not getting. What tips me off is how I feel after the circumstance, connection, opportunity, or project presents itself. I feel panic, pressure, doubt, and begin to plan out how I’m going to “add it in.” I’m realizing that the joy, peace and affirmation of how wonderful life can truly be (as Roxanne speaks of) missing and even though I think I’m open to things, I’m really not at all. In order for me to experience both lupus management and true synchronicity, I have to remain open, yet be sure to allow some give to feel the moment more as a gift and cherish it before I try to cage it. This point is something I have recognized for myself a dozen times, but I still keep doing it! I suspect I'll keep doing it until it finally clicks. I think reading this chapter again has brought me one step closer to that "click."

    Roxanne’s book is a great book to have on hand for these moments where, even though I know what I ‘should’ be doing, she discusses topics that we can often minimize or dismiss as routine. Finding the joy in our moments, as they accumulate over time, needs to be a routine. I thank her for her resource and beautiful writing that invites me to revisit these key points as often as I need to. If you’ve followed along, thank you. I’ve learned that books like hers are difficult to discuss, but they are wonderful to have on hand. Even though this discussion is stopping here, it remains open for times like this one, where life brings us to re-think things a little and Roxanne’s book offers a good place to start.

    posted 1 year ago. ( permalink )
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