Yesterday was International Human Rights Day. Ordinarily, I would be taking the opportunity that this day affords to draw attention to certain human rights abuses occurring both domestically and internationally. I would urge my loved ones to write their elected officials, to join campaigns designed to address these abuses, to take action in significant ways. But, this year all I did was wish my loved ones a “Happy International Human Rights Day” on Facebook. I took this action alone because talking about human rights gets me very worked up. And I am supposed to guard against getting worked up at all costs.
Those of you who know me well know that I am an intense person. Although I absolutely love to laugh and to enjoy myself, my default state is intensity. I have been this way since I was a very little girl. For most of my life, this default state has suited me well. It has allowed me to pursue my education, my relationships and my personal growth despite significant odds. While my intensity may alienate people at times, most people who love me would ultimately cite my intensity as a virtue rather than a vice.
However, those loved ones also tend to echo the words of my physicians. They all insist that my intense nature tends to lead to stress. And when one has lupus, stress must be avoided. Chronic stress leads to inflammation in the body. Lupus causes chronic extensive inflammation. Managing stress generally leads to less inflammation in the body, which ultimately helps to lessen lupus symptoms. So, if I want to become healthy enough to get off my meds so that I can both get pregnant and sustain a healthy pregnancy, I have to lay off the stress. Unfortunately, laying off stress actually compromises my identity.
As you likely know, I am most passionate about three particular realities. My relationships, writing/storytelling and human rights. Being the mom of a teenager and Mark’s partner can be stressful at times… but generally my family and friend relationships bring me more joy than stress. However, writing/storytelling and human rights advocacy are necessarily stressful. It is important to note that I DON’T MIND the stress that these two passions cause. They are so intimately connected to my identity that the stress that necessarily accompanies them is a total afterthought to me. However, my body DOES MIND this stress.
I confess that I truly resent the idea that in order to remain healthy and to become pregnant at this point in my life that I must essentially avoid the passions that make me, me. There is really no way to be a productive writer or to be an effective human rights advocate without becoming invested in this inherently stressful work. I am finding that I can’t even read the New York Times on a daily basis without getting seriously fired up. I don’t read passively. If I read something that I feel strongly about, I end up researching it, reaching out to my elected representatives, corporations, etc. about it, contacting organizations about volunteering or otherwise engaging, etc. Reading passively just doesn’t work for me… this is so true that my daughter refers to writing letters to companies, elected officials, etc. as “Going all Kassie.” I can’t even watch the news or political programming without talking intensely to said programs. Mark frequently hears me talking to the television in the next room and simply yells, “You tell ‘em, baby!” (This is becoming a more and more frequent refrain in our house as the 2016 election has drawn closer.)
When I attempt to detach from stress, I end up getting very quiet. I tend to read only children’s books, YA lit and chick lit. I lose my appetite. I also sleep A LOT. It is as if my body starts to shut down when I stop interacting with (and ultimately stressing out about) the things that matter most to me. I have been trying since law school to figure out ways to remain a writer and advocate while becoming less of a stress ball. I have not been successful. Writing and advocacy tend to be all-encompassing for me.
Project Jellybean means the world to me. And if I have to spend a few years quietly, passively and narcoleptic in order to meet the newest member of our family, I will absolutely do so. But I confess that I neither like this lower-stress reality, nor do I recognize who I am within it.
Friday, December 11, 2015
Saturday, December 5, 2015
Problem: I Love Television
One of the stranger obstacles I must overcome in my quest to become much, much healthier is that I love television. And while I will unapologetically respond "Yes!" if someone asks if I am a big fan of television, I harbor a great deal of personal guilt over the fact that I am so enamored with this particular form of entertainment.
This guilt was recently soothed a bit when I engaged in a conversation with someone I consider to be brilliant, straightforward and trustworthy. She confirmed that while programming that serves primarily as a distraction should be either avoided or seriously limited, programming that makes me think critically or that inspires me likely does me more good than harm... provided that I am not binge-watching said programming.
Thankfully, most of my favorite programming fits this criterion. Shows like "Alias," "Downton Abbey," "The West Wing," "The Newsroom," "Studio 60 on the Sunset Strip," "Super Soul Sunday," and "Madame Secretary" are either inspirational or compel me to think critically. I justify "creation-focused" reality television like "Project Runway" and "Top Chef" because, occasional cattiness and drama aside, they make me think about my own creative process and time management challenges. I can even (sometimes) justify my love of shows like "Parks and Recreation," "Mom," "Jane the Virgin" and "Grey's Anatomy" because (like many books) they either cause me to belly laugh and or they stretch my ability to empathize. Finally, I justify watching "The Daily Show," "The Nightly Show," "Last Week Tonight with John Oliver" and the non-interview (and interviews of inspirational individuals) segments of "The Late Show with Stephen Colbert" because they tend to be news-based and are generally whip-smart.
Watching any shows I happen to love that don't meet these criteria ("Dance Moms" - Please don't judge me too harshly... I love to watch the girls dance even though Abby Lee is abhorrent, "Queer Eye for the Straight Guy," "Hart of Dixie," Anything on The Food Network, "Modern Family," etc.) fill me with guilt.
In addition, even the shows I can justify are so numerous that I can easily spend many of my waking hours watching them, if given the opportunity. I am a voracious reader, but I tend to turn to television in the evenings when my eyes won't focus and they roll around in my head if I try to focus on type. Also, my kitchen table serves as my work space, so I tend to eat in front of the television too. In short, I watch too much damn television. And even when I can justify my choice of programming, watching so much of it serves as a serious obstacle to focusing on all the things I need to be doing to get healthy.
And yet... I LOVE television. Living at a time when I can easily focus my television time on programming I truly want to watch makes viewing a pleasure. In addition, it tends to serve as a form of connection with the rest of humanity when I am too darn sick to socialize. I may know that excessive viewing is an obstacle to getting healthier, yet it is certainly the most challenging personal habit to kick... at least for me. If I come up with any brilliant ways to keep my ass off the couch and my eyes off the television, I will let you know. Until then, just cross your fingers for me that I can at least exercise a modicum of self-control when it comes to the endless appeal of modern television.
This guilt was recently soothed a bit when I engaged in a conversation with someone I consider to be brilliant, straightforward and trustworthy. She confirmed that while programming that serves primarily as a distraction should be either avoided or seriously limited, programming that makes me think critically or that inspires me likely does me more good than harm... provided that I am not binge-watching said programming.
Thankfully, most of my favorite programming fits this criterion. Shows like "Alias," "Downton Abbey," "The West Wing," "The Newsroom," "Studio 60 on the Sunset Strip," "Super Soul Sunday," and "Madame Secretary" are either inspirational or compel me to think critically. I justify "creation-focused" reality television like "Project Runway" and "Top Chef" because, occasional cattiness and drama aside, they make me think about my own creative process and time management challenges. I can even (sometimes) justify my love of shows like "Parks and Recreation," "Mom," "Jane the Virgin" and "Grey's Anatomy" because (like many books) they either cause me to belly laugh and or they stretch my ability to empathize. Finally, I justify watching "The Daily Show," "The Nightly Show," "Last Week Tonight with John Oliver" and the non-interview (and interviews of inspirational individuals) segments of "The Late Show with Stephen Colbert" because they tend to be news-based and are generally whip-smart.
Watching any shows I happen to love that don't meet these criteria ("Dance Moms" - Please don't judge me too harshly... I love to watch the girls dance even though Abby Lee is abhorrent, "Queer Eye for the Straight Guy," "Hart of Dixie," Anything on The Food Network, "Modern Family," etc.) fill me with guilt.
In addition, even the shows I can justify are so numerous that I can easily spend many of my waking hours watching them, if given the opportunity. I am a voracious reader, but I tend to turn to television in the evenings when my eyes won't focus and they roll around in my head if I try to focus on type. Also, my kitchen table serves as my work space, so I tend to eat in front of the television too. In short, I watch too much damn television. And even when I can justify my choice of programming, watching so much of it serves as a serious obstacle to focusing on all the things I need to be doing to get healthy.
And yet... I LOVE television. Living at a time when I can easily focus my television time on programming I truly want to watch makes viewing a pleasure. In addition, it tends to serve as a form of connection with the rest of humanity when I am too darn sick to socialize. I may know that excessive viewing is an obstacle to getting healthier, yet it is certainly the most challenging personal habit to kick... at least for me. If I come up with any brilliant ways to keep my ass off the couch and my eyes off the television, I will let you know. Until then, just cross your fingers for me that I can at least exercise a modicum of self-control when it comes to the endless appeal of modern television.
Sunday, November 15, 2015
Constructing Project Jellybean
When I was attempting to train for my first marathon (a goal that is now currently on hold) I was easily able to access books and websites devoted to the subject of marathon training. There are no books or websites specifically geared towards getting healthy enough to get off one's most toxic meds and staying healthy enough to remain off of them for six months pre-conception, whatever duration it takes to get pregnant, nine months of pregnancy and one year of nursing. As a result, I am having to construct Project Jellybean in bits and pieces, with the aid of a host of sources.
All of the lesser goals I will be reaching for will be undertaken in service of the larger goal noted above. It has been difficult to know exactly where to start. Thankfully, one of my physicians recently gave me some excellent advice, which I will be embracing starting Monday (given that I need to take some time tomorrow to actually evaluate the ins and outs of this advice... which should be doable given that the Packer game is not being televised in the metro, which is annoying to say the least). My doctor advised me to create a hierarchy of healing. This hierarchy will illustrate those efforts that my physicians and I believe will help to aid me in achieving my larger goal. Once I have successfully integrated the most important effort into my daily life, I can move onto integrating the second-most important effort into my daily life... and so on.
For example, if I believed that there are three efforts worth undertaking (I will use meditation, increased ingestion of quality green tea and body brushing as examples) I would rank these efforts in order of their likely importance in helping me to achieve my goal. In this example, I will rank tea as most important, meditation as second-most important and body brushing as least important. I would then work to integrate increased ingestion of green tea into my daily life until I was as sure as I can be that this habit will be sustainable for the remainder of my journey (through the time period of nursing post-partum). Once that habit is established, I would move on to integrating meditation into my daily routine until that habit is securely fixed, and so on.
This method seems particularly hopeful, as it allows me to focus on one change at a time until it is not only manageable but truly fixed in my daily life. However, this approach is a bit intimidating, given that "lots o' sleep" is really the only positive habit I seem to be engaging in on a truly regular basis at the moment, given the severity of my disease right now. However, all journeys must begin somewhere and I am grateful to have a place to begin.
All of the lesser goals I will be reaching for will be undertaken in service of the larger goal noted above. It has been difficult to know exactly where to start. Thankfully, one of my physicians recently gave me some excellent advice, which I will be embracing starting Monday (given that I need to take some time tomorrow to actually evaluate the ins and outs of this advice... which should be doable given that the Packer game is not being televised in the metro, which is annoying to say the least). My doctor advised me to create a hierarchy of healing. This hierarchy will illustrate those efforts that my physicians and I believe will help to aid me in achieving my larger goal. Once I have successfully integrated the most important effort into my daily life, I can move onto integrating the second-most important effort into my daily life... and so on.
For example, if I believed that there are three efforts worth undertaking (I will use meditation, increased ingestion of quality green tea and body brushing as examples) I would rank these efforts in order of their likely importance in helping me to achieve my goal. In this example, I will rank tea as most important, meditation as second-most important and body brushing as least important. I would then work to integrate increased ingestion of green tea into my daily life until I was as sure as I can be that this habit will be sustainable for the remainder of my journey (through the time period of nursing post-partum). Once that habit is established, I would move on to integrating meditation into my daily routine until that habit is securely fixed, and so on.
This method seems particularly hopeful, as it allows me to focus on one change at a time until it is not only manageable but truly fixed in my daily life. However, this approach is a bit intimidating, given that "lots o' sleep" is really the only positive habit I seem to be engaging in on a truly regular basis at the moment, given the severity of my disease right now. However, all journeys must begin somewhere and I am grateful to have a place to begin.
Sunday, November 8, 2015
Introducing Project Jellybean
Four days ago, my rheumatologist looked over my lab work and my catalog of recent symptoms. She poked and prodded various parts of my body and stared at my scans. "Your disease is definitely progressing," she said. I closed my eyes and said a quick prayer. "Well," I responded, "That doesn't really work for me."
As most of you reading this post are aware, I have tried (unsuccessfully) to train for a marathon more than once over the past few years. Despite a positive attitude and hard work, my body simply refused to cooperate with my desire to reach this particular goal at this particular time in my life. I stopped writing blog posts for several months when it became apparent that my running goal would need to be put on the shelf until I could get healthier. Unfortunately, I have become sicker since that last post was written. In addition to my lupus (which is apparently progressing despite serious recent interventions) and fibromyalgia (which I have largely been able to manage lately... woo hoo!!!), I have been diagnosed with Sjogren's Syndrome, which puts me at a much higher risk of developing non-Hodgkin's lymphoma. My disease made me so sick that I was compelled to take medical leave from my job from late July until mid-September... and my physician wants me to take leave again right now. Unfortunately, I can't manage without my paycheck, so I just have to suck it up.
For better and for worse, I feel compelled to get my disease under control as quickly as is possible because I have another goal that needs tending to. And unfortunately, unlike my marathon goal, this goal is time-sensitive. Mark and I want to add another little person to our family. But we can't do that until I am healthy enough to get pregnant.
It is almost laughable... the girl who so inconveniently got pregnant at 17-years-old is having a whopper of a time getting pregnant at the mature/responsible/"convenient" age of 33-years-old. What is not laughable however, is how deeply this little person is wanted by Mark, by Samantha and by me. Samantha has started hugging my middle and patting it... I have to remind her that there is nothing in there. Mark asks me about different names he likes a few times a week... even though we basically have both a girl name and a boy name already chosen. And I... I have come to view basically every life choice against the backdrop of preparing for the little potential being that I affectionately refer to as "The Jellybean."
Right now, I am taking a course of low-dose chemotherapy drugs that are prohibitive during pregnancy. In fact, I have to wait six months post-treatment to attempt conception. The hope is that my current regimen of drugs will bring my inflammatory levels down to a place where I can discontinue the most toxic drugs and attempt to get pregnant six months later. The rub is that I have to keep my inflammatory markers down during those six months and during pregnancy due to the severe health risks that high inflammation levels would cause me and a potential pregnancy. (For example, the NIH and other prestigious research organizations have tied high inflammation markers in pregnant women to weak brain connections and a significantly higher (a truly scary higher) rate of autism in their babies.) This is particularly frustrating, given that any pregnancy of mine will already be considered high-risk, but will be almost prohibitively high risk once I reach the age of 35. I just turned 33, so the clock is not just ticking... it is slamming its passage of time against the base of my skull basically all of my waking hours.
Thus, "Project Jellybean" has recently been born... no pun intended. I need to explore new ways of managing my disease and navigating my life so that I can hopefully be entrusted with a healthy pregnancy before time runs out. As I will need all the support I can get (and multiple ways to process the ups and downs of this journey) I have decided to start my blog back up again. I hope that it will be humorous, insightful, vulnerable and thought-provoking. If you are interested in following my journey (in whole or in part) I encourage you to check in with my blog whenever you please.
During my next post, I will be outlining a bit more clearly what "Project Jellybean" will most likely look like and what actions I am taking right now to more effectively manage my disease. Until then, I wish all of my readers health, happiness, peace of mind and any healing energy each of you may need as you deal with the ups and downs in your own lives. (I originally wrote the word "liver" instead of lives... one of my current complications is liver toxicity... isn't it funny how the things that are most pressing in your subconscious have a way of working themselves into your consciousness? Anyway... I digress!)
As most of you reading this post are aware, I have tried (unsuccessfully) to train for a marathon more than once over the past few years. Despite a positive attitude and hard work, my body simply refused to cooperate with my desire to reach this particular goal at this particular time in my life. I stopped writing blog posts for several months when it became apparent that my running goal would need to be put on the shelf until I could get healthier. Unfortunately, I have become sicker since that last post was written. In addition to my lupus (which is apparently progressing despite serious recent interventions) and fibromyalgia (which I have largely been able to manage lately... woo hoo!!!), I have been diagnosed with Sjogren's Syndrome, which puts me at a much higher risk of developing non-Hodgkin's lymphoma. My disease made me so sick that I was compelled to take medical leave from my job from late July until mid-September... and my physician wants me to take leave again right now. Unfortunately, I can't manage without my paycheck, so I just have to suck it up.
For better and for worse, I feel compelled to get my disease under control as quickly as is possible because I have another goal that needs tending to. And unfortunately, unlike my marathon goal, this goal is time-sensitive. Mark and I want to add another little person to our family. But we can't do that until I am healthy enough to get pregnant.
It is almost laughable... the girl who so inconveniently got pregnant at 17-years-old is having a whopper of a time getting pregnant at the mature/responsible/"convenient" age of 33-years-old. What is not laughable however, is how deeply this little person is wanted by Mark, by Samantha and by me. Samantha has started hugging my middle and patting it... I have to remind her that there is nothing in there. Mark asks me about different names he likes a few times a week... even though we basically have both a girl name and a boy name already chosen. And I... I have come to view basically every life choice against the backdrop of preparing for the little potential being that I affectionately refer to as "The Jellybean."
Right now, I am taking a course of low-dose chemotherapy drugs that are prohibitive during pregnancy. In fact, I have to wait six months post-treatment to attempt conception. The hope is that my current regimen of drugs will bring my inflammatory levels down to a place where I can discontinue the most toxic drugs and attempt to get pregnant six months later. The rub is that I have to keep my inflammatory markers down during those six months and during pregnancy due to the severe health risks that high inflammation levels would cause me and a potential pregnancy. (For example, the NIH and other prestigious research organizations have tied high inflammation markers in pregnant women to weak brain connections and a significantly higher (a truly scary higher) rate of autism in their babies.) This is particularly frustrating, given that any pregnancy of mine will already be considered high-risk, but will be almost prohibitively high risk once I reach the age of 35. I just turned 33, so the clock is not just ticking... it is slamming its passage of time against the base of my skull basically all of my waking hours.
Thus, "Project Jellybean" has recently been born... no pun intended. I need to explore new ways of managing my disease and navigating my life so that I can hopefully be entrusted with a healthy pregnancy before time runs out. As I will need all the support I can get (and multiple ways to process the ups and downs of this journey) I have decided to start my blog back up again. I hope that it will be humorous, insightful, vulnerable and thought-provoking. If you are interested in following my journey (in whole or in part) I encourage you to check in with my blog whenever you please.
During my next post, I will be outlining a bit more clearly what "Project Jellybean" will most likely look like and what actions I am taking right now to more effectively manage my disease. Until then, I wish all of my readers health, happiness, peace of mind and any healing energy each of you may need as you deal with the ups and downs in your own lives. (I originally wrote the word "liver" instead of lives... one of my current complications is liver toxicity... isn't it funny how the things that are most pressing in your subconscious have a way of working themselves into your consciousness? Anyway... I digress!)
Friday, February 20, 2015
Featured on "Another Mother Runner"
Good morning, all. Do you remember that I gave an interview (many moons ago) to the authors of the "Another Mother Runner" series? My story is being featured today on their blog. My interview has been condensed and edited in some strange grammatical ways, but I hope that it provides some others with inspiration regardless! Have a wonderful weekend and feel free to check out my interview when you have a moment: http://anothermotherrunner.com/2015/02/19/in-her-shoes-logging-miles-lupus/?utm_source=Mother+Runners+Daily&utm_medium=email&utm_campaign=006ec197ac-RSS_EMAIL_CAMPAIGN&utm_term=0_3932c69c84-006ec197ac-63523073
Saturday, February 14, 2015
Self-love on Valentine's Day
Oh, Valentine’s Day. Loved by some and loathed by others… I understand both reactions. Personally, I am a big fan of Valentine’s Day because I think any excuse to behave in loving, romantic or goofy ways is an excuse to be embraced.
Samantha was surprised to discover that she was the only one of her friends to bring valentines to share this year. I probably should have given her a word of warning that not every eighth grader views a holiday like Valentine’s Day as something to get excited about. But in the end, she felt fabulous about the fact that the little homemade felt and puffball cupcake valentine kit I sent her led to gifts that were giddily received. It may not be “cool” to like valentines as a teenager, but when someone is brave enough to give you a cute and lovingly presented treat, the result tends to be largely positive. This is the Valentine’s Day lesson that my daughter learned this year.
I am in the process of learning another lesson. I dig holidays. I really, really dig holidays, actually. But the tone of holidays has changed since I became a lupus patient. Planning ahead is difficult and showing up for plans is even more difficult. I spent a good 20 minutes talking myself into simply getting into the shower today. And only partially because I am not currently in a position to go “all out” by hosting some sort of celebration or sending elaborate homemade gifts to loved ones this year, I am working on fostering some heightened levels of self-love.
Self-love is a tricky thing when your identity has been modified significantly by illness. I certainly attempt to practice self-compassion on a daily basis, but I struggle with liking myself sometimes when my “self” looks so very different than I am used to. I had someone I respect deeply say to me this week, “Remember old you? Energetic you? Damn she was great.” Umm… thanks? I know that this individual meant this comment as a sort of compliment. But this comment only served to reinforce the audio in my head which too frequently judges my current self against my pre-lupus self.
After thinking about this comment for awhile, I resolved to take my dear “excuse” for loving behavior that is Valentine’s Day and turn that excuse inward. Too often, we forget to treat ourselves in the loving ways that we would ordinarily treat others. For example, if a loved one of mine had the experience that I had this morning (which involved me having to protect a mentally disabled teenage boy from mistreatment and becoming terribly rattled in the wake of my confrontation with the individual who refused to afford this young man any respect or consideration), I would have treated that loved one to tea or coffee and a chat until he or she felt better. That is just how I personally would show my love for someone in that situation. So, I treated myself to tea, a cookie and a long journal “vent” about the situation until I did indeed begin to feel better.
If you are out of the habit of treating yourself with the kind of love that you shower others with, consider taking the “excuse” of this Valentine’s Day to make that kind of effort. It may not yield the same kinds of feelings you ordinarily associate with making loving efforts, but it is absolutely an effort worth making. Happy Valentine’s Day, everyone!
Samantha was surprised to discover that she was the only one of her friends to bring valentines to share this year. I probably should have given her a word of warning that not every eighth grader views a holiday like Valentine’s Day as something to get excited about. But in the end, she felt fabulous about the fact that the little homemade felt and puffball cupcake valentine kit I sent her led to gifts that were giddily received. It may not be “cool” to like valentines as a teenager, but when someone is brave enough to give you a cute and lovingly presented treat, the result tends to be largely positive. This is the Valentine’s Day lesson that my daughter learned this year.
I am in the process of learning another lesson. I dig holidays. I really, really dig holidays, actually. But the tone of holidays has changed since I became a lupus patient. Planning ahead is difficult and showing up for plans is even more difficult. I spent a good 20 minutes talking myself into simply getting into the shower today. And only partially because I am not currently in a position to go “all out” by hosting some sort of celebration or sending elaborate homemade gifts to loved ones this year, I am working on fostering some heightened levels of self-love.
Self-love is a tricky thing when your identity has been modified significantly by illness. I certainly attempt to practice self-compassion on a daily basis, but I struggle with liking myself sometimes when my “self” looks so very different than I am used to. I had someone I respect deeply say to me this week, “Remember old you? Energetic you? Damn she was great.” Umm… thanks? I know that this individual meant this comment as a sort of compliment. But this comment only served to reinforce the audio in my head which too frequently judges my current self against my pre-lupus self.
After thinking about this comment for awhile, I resolved to take my dear “excuse” for loving behavior that is Valentine’s Day and turn that excuse inward. Too often, we forget to treat ourselves in the loving ways that we would ordinarily treat others. For example, if a loved one of mine had the experience that I had this morning (which involved me having to protect a mentally disabled teenage boy from mistreatment and becoming terribly rattled in the wake of my confrontation with the individual who refused to afford this young man any respect or consideration), I would have treated that loved one to tea or coffee and a chat until he or she felt better. That is just how I personally would show my love for someone in that situation. So, I treated myself to tea, a cookie and a long journal “vent” about the situation until I did indeed begin to feel better.
If you are out of the habit of treating yourself with the kind of love that you shower others with, consider taking the “excuse” of this Valentine’s Day to make that kind of effort. It may not yield the same kinds of feelings you ordinarily associate with making loving efforts, but it is absolutely an effort worth making. Happy Valentine’s Day, everyone!
Monday, February 2, 2015
Why “Beating Lupus” is Much Like Passing the Bar Exam
Bar Exam: Act One
The first time I prepped for the Bar Exam, I spent the months leading up to it supervising 75 teenage girls and a gaggle of counselors at a residential summer camp in the Poconos mountains. I was technically on-duty from 7:00am every morning when I woke the girls up until 10:30 at night, when I told them one last time to please be quiet. The only days I had off that summer I spent either studying or flying home to take the exam.
Each day, I studied every spare moment I got. I flipped through flashcards as I walked back and forth to various camp activities and highlighted down outlines as I ate as much ice cream as my belly would hold on “Sundae Mondays.” I reviewed and wrote practice essays while making sure kids didn’t sneak out of dances to make out in the woods and I flipped through even more flashcards while watching the girls during counselor downtime. Roughly 10 days before the test, I felt as ready as one can feel when it comes to the Bar Exam. And then… swine flu swept through the camp like wildfire.
I would later learn that the area where the camp was located was essentially ground zero for the swine flu epidemic that laid much of the country flat that summer. It should have occurred to me that I might get sick taking care of lots of sick teen girls. But these poor kids were far from home and I wasn’t going to let them be alone or without what they needed if I could help it. When I got sick, alone and in a sweltering cabin with no entertainment, no relief and no cell reception, I spent a lot of time feverishly drifting between crying in my sleep and crying while awake.
Three days before the exam, the camp doctor faxed a note to the Board of Examiners indicating that there was no medical way I could sit for the exam. But because I had non-refundable plane tickets back to the Cities and I desperately wanted someone to take care of me for a few days, I selfishly flew home. It didn’t occur to me until I was vomiting repeatedly on the plane, while fighting the worst headache of my life, that the decision had been a mistake.
Bar Exam: Act Two
Several months after the swine flu debacle, I had been hired at Thomson Reuters and needed to study again so that I could actually take the damn test. I certainly couldn’t take a leave from a brand-new job, so I got up early every day to drive into work and headed to Starbucks to study after putting in a full workday. I then studied at Starbucks until it closed. I often stayed at Starbucks from open until close on weekend days as well. Because Mark never got to see me in these days, he would often bring work or a book to Starbucks just to sit next to me while I studied… as he was usually asleep when I got home and still asleep when I left in the morning for work.
Lupus:
Studying for the Bar Exam is a process that takes over your life. It consumes every moment you are awake… you are either studying, doing some other necessary task before you study or trying to recover from studying too much. This observance is not a complaint. I am fully aware of how many women (both past and present) would have given limbs for the opportunities I was given to both go to law school and sit for the Bar Exam. I cannot express how grateful I am to have been able to navigate this experience. However, it is worth noting that the experience is both draining and consuming.
Trying to battle the symptoms of Lupus successfully is not unlike the process of studying for the Bar. It consumes my thoughts and actions from the first moments after I wake in the morning until I try to quiet my brain for sleep. I dream about it and agonize over it and do my damndest to show up for the process. And just as it is draining and consuming, I am fully aware that it could be so much worse. I am grateful that my condition has only been debilitating for short bursts of time, unlike the conditions of so many other autoimmune patients. And hopefully… just maybe… I will be able to “beat” the symptoms of Lupus in the same way that I FINALLY passed the Bar Exam that second time around.
The first time I prepped for the Bar Exam, I spent the months leading up to it supervising 75 teenage girls and a gaggle of counselors at a residential summer camp in the Poconos mountains. I was technically on-duty from 7:00am every morning when I woke the girls up until 10:30 at night, when I told them one last time to please be quiet. The only days I had off that summer I spent either studying or flying home to take the exam.
Each day, I studied every spare moment I got. I flipped through flashcards as I walked back and forth to various camp activities and highlighted down outlines as I ate as much ice cream as my belly would hold on “Sundae Mondays.” I reviewed and wrote practice essays while making sure kids didn’t sneak out of dances to make out in the woods and I flipped through even more flashcards while watching the girls during counselor downtime. Roughly 10 days before the test, I felt as ready as one can feel when it comes to the Bar Exam. And then… swine flu swept through the camp like wildfire.
I would later learn that the area where the camp was located was essentially ground zero for the swine flu epidemic that laid much of the country flat that summer. It should have occurred to me that I might get sick taking care of lots of sick teen girls. But these poor kids were far from home and I wasn’t going to let them be alone or without what they needed if I could help it. When I got sick, alone and in a sweltering cabin with no entertainment, no relief and no cell reception, I spent a lot of time feverishly drifting between crying in my sleep and crying while awake.
Three days before the exam, the camp doctor faxed a note to the Board of Examiners indicating that there was no medical way I could sit for the exam. But because I had non-refundable plane tickets back to the Cities and I desperately wanted someone to take care of me for a few days, I selfishly flew home. It didn’t occur to me until I was vomiting repeatedly on the plane, while fighting the worst headache of my life, that the decision had been a mistake.
Bar Exam: Act Two
Several months after the swine flu debacle, I had been hired at Thomson Reuters and needed to study again so that I could actually take the damn test. I certainly couldn’t take a leave from a brand-new job, so I got up early every day to drive into work and headed to Starbucks to study after putting in a full workday. I then studied at Starbucks until it closed. I often stayed at Starbucks from open until close on weekend days as well. Because Mark never got to see me in these days, he would often bring work or a book to Starbucks just to sit next to me while I studied… as he was usually asleep when I got home and still asleep when I left in the morning for work.
Lupus:
Studying for the Bar Exam is a process that takes over your life. It consumes every moment you are awake… you are either studying, doing some other necessary task before you study or trying to recover from studying too much. This observance is not a complaint. I am fully aware of how many women (both past and present) would have given limbs for the opportunities I was given to both go to law school and sit for the Bar Exam. I cannot express how grateful I am to have been able to navigate this experience. However, it is worth noting that the experience is both draining and consuming.
Trying to battle the symptoms of Lupus successfully is not unlike the process of studying for the Bar. It consumes my thoughts and actions from the first moments after I wake in the morning until I try to quiet my brain for sleep. I dream about it and agonize over it and do my damndest to show up for the process. And just as it is draining and consuming, I am fully aware that it could be so much worse. I am grateful that my condition has only been debilitating for short bursts of time, unlike the conditions of so many other autoimmune patients. And hopefully… just maybe… I will be able to “beat” the symptoms of Lupus in the same way that I FINALLY passed the Bar Exam that second time around.
Wednesday, January 28, 2015
Excuse Me? I Can’t Eat WHAT???
Most of the time, I understand that I am profoundly blessed and I can hold this perspective in mind. Then, there are days like today when it takes substantial effort to keep this fact at the forefront of my cinnamon rolls (also known as brains).
Lupus is the kind of medical condition that can be completely debilitating. Many lupus patients are forced to quit their jobs and go on disability. I am very, very grateful that I have not been compelled to take this course of action in order to manage my disease. And lately, my pain level has decreased dramatically, which has been a phenomenal turn of events. However, I learned the hard way that simply because my pain and fatigue are being managed pretty effectively, inflammation has not stopped raging inside my body.
A few weeks back, I essentially forgot to take my meds for 48 hours. And boy, did my body let me know what a mistake that was. In addition to horrible aching, tingling and shooting pains in various parts of my body, it felt like someone had gone at several of my long bones with a baseball bat. After resuming my medication schedule, I called my rheumatologist, who ordered blood.
It seems that while my pain meds are working quite well, my immunosuppressant medication is no longer controlling my inflammation very well at all. After more blood work comes back, my rheumatologist will be determining what new, even stronger meds we should try… because 2.5 years’ worth of steroids and immunosuppressant meds have yet to work over a sustained period of time.
This is the kind of development that makes me so frustrated that I have to check myself in order to make sure that I do not go banana muffins. If the inflammation in my body is not brought down to healthy levels, then the pain medications I’m on are simply masking the extremely serious underlying problem.
So, I have spent much time this past week on the phone with doctors, in doctors’ offices, on the phone with nurses and generally seeking counsel from a variety of medical sources. And this is what I have determined: In order to better bring my inflammation under control, I need to turn up the volume on everything I am already doing. Stress reduction, mediation, stretching, acupuncture, etc. (The list is very, very long). In addition, I am supposed to try and cut the following things from my already whole-foods, vegan, non-spicy, non-fatty, non-salty, non-sugary (three of these last four qualifications are for other medical issues) diet:
- Gluten
- Grains (yes, you heard me right. All freaking grains)
- All corn and soy
- Legumes
- Nighshades (including eggplant, white potatoes and tomatoes)
And this, my dear friends, is why I’m trying to focus on gratitude. After you’re done reading this post, go to your kitchen or look on some menus and find everything that is vegan (no meat, fish, dairy), unprocessed (no packaged foods) and is not spicy, fatty, salty, has no sugar (unless it is a fruit), is gluten-free, grain-free, soy-free, corn-free and has no potatoes, tomatoes, eggplant or legumes (beans, peas, peanuts, peanut products, carob, lentils, etc.)
And, while you are engaging in this exercise, keep in mind that my disease is chronic, so I’m never ever going to be able to change eating like this.
Gah. Even writing this post is pissing me off right now. BLAH.
Sigh. It is important to honor and acknowledge the things that challenge us. And yet, I know that it is never long before I remember that I am extremely blessed and that the best thing I can do is battle this condition with all I can give and to keep it in perspective.
Lupus is the kind of medical condition that can be completely debilitating. Many lupus patients are forced to quit their jobs and go on disability. I am very, very grateful that I have not been compelled to take this course of action in order to manage my disease. And lately, my pain level has decreased dramatically, which has been a phenomenal turn of events. However, I learned the hard way that simply because my pain and fatigue are being managed pretty effectively, inflammation has not stopped raging inside my body.
A few weeks back, I essentially forgot to take my meds for 48 hours. And boy, did my body let me know what a mistake that was. In addition to horrible aching, tingling and shooting pains in various parts of my body, it felt like someone had gone at several of my long bones with a baseball bat. After resuming my medication schedule, I called my rheumatologist, who ordered blood.
It seems that while my pain meds are working quite well, my immunosuppressant medication is no longer controlling my inflammation very well at all. After more blood work comes back, my rheumatologist will be determining what new, even stronger meds we should try… because 2.5 years’ worth of steroids and immunosuppressant meds have yet to work over a sustained period of time.
This is the kind of development that makes me so frustrated that I have to check myself in order to make sure that I do not go banana muffins. If the inflammation in my body is not brought down to healthy levels, then the pain medications I’m on are simply masking the extremely serious underlying problem.
So, I have spent much time this past week on the phone with doctors, in doctors’ offices, on the phone with nurses and generally seeking counsel from a variety of medical sources. And this is what I have determined: In order to better bring my inflammation under control, I need to turn up the volume on everything I am already doing. Stress reduction, mediation, stretching, acupuncture, etc. (The list is very, very long). In addition, I am supposed to try and cut the following things from my already whole-foods, vegan, non-spicy, non-fatty, non-salty, non-sugary (three of these last four qualifications are for other medical issues) diet:
- Gluten
- Grains (yes, you heard me right. All freaking grains)
- All corn and soy
- Legumes
- Nighshades (including eggplant, white potatoes and tomatoes)
And this, my dear friends, is why I’m trying to focus on gratitude. After you’re done reading this post, go to your kitchen or look on some menus and find everything that is vegan (no meat, fish, dairy), unprocessed (no packaged foods) and is not spicy, fatty, salty, has no sugar (unless it is a fruit), is gluten-free, grain-free, soy-free, corn-free and has no potatoes, tomatoes, eggplant or legumes (beans, peas, peanuts, peanut products, carob, lentils, etc.)
And, while you are engaging in this exercise, keep in mind that my disease is chronic, so I’m never ever going to be able to change eating like this.
Gah. Even writing this post is pissing me off right now. BLAH.
Sigh. It is important to honor and acknowledge the things that challenge us. And yet, I know that it is never long before I remember that I am extremely blessed and that the best thing I can do is battle this condition with all I can give and to keep it in perspective.
Tuesday, January 27, 2015
The Necessity of Theme Music
Many of my friends and loved ones in the healthcare profession have confessed to me that they cannot enjoy medical dramas. Similarly, I have found that I cannot enjoy legal dramas. As an attorney, I am frequently distracted and frustrated by the inconsistencies and missteps that the writers and producers of these shows often seem to care little about. Once, when I was watching a movie with a court scene in it with (then) nine-year-old Samantha, she hollered at the television, “You can’t do that!” “He can’t do what, babe?” I asked. “He can’t turn down a settlement offer without taking the offer to his client, right? You tell lawyers on tv that a lot.” I rest my case.
However, I have found that I cannot only watch but can actually enjoy legal shows that are ludicrous in nature. As long as the show exists in some sort of half-reality and is comedic in nature, I can gobble legal storylines up with a spoon. This is why I am a fan of shows like, “Drop Dead Diva” and “Ally McBeal.”
While “Drop Dead Diva” is more of a “guilty pleasure” (I take issue with that phrase, but that is a topic for another post), I actually think that “Ally McBeal” is surprisingly brilliant. The vulnerabilities and inner struggles of many of the show’s main characters often manifest themselves in larger-than-life ways. And while I am normally not a fan of magical realism (do not get me started) except when this tool is used exceptionally well, I believe that the show’s investment in magical realism is not just part of its charm, it often serves as an extraordinary manifestation of heart.
However, one of my favorite emotional tools that some of the characters on this show utilize is not magical at all. It is straightforward and can be used by any one of us during moments when we need a boost, when we want to celebrate and when we need to focus our energy in order to achieve an aim. This tool is theme music.
When Ally goes to see her nutty therapist about an inner struggle, the therapist insists that Ally needs to get herself a theme song. Ultimately Ally chooses “Tell Him” by Linda Ronstadt. When she needs courage, when she triumphs and when she needs to pump herself up, she begins playing that song in her head. Almost always invigorated as a result, she move forward onto whatever she needs to do next with more focus, vibrancy and life than she previously possessed.
Over the past few weeks, as I have begun to adjust to the ups and downs of feeling much better on medication but remain ultimately limited in a host of ways, I have called upon theme music and it has been surprisingly effective. At the moment, I have two songs that I am calling upon. When I am home alone and can dance out an entire song, I use “Shake it Out” by Florence + The Machine. When I have company or am out and about, all I have to do is start hearing the opening beats to “Jump” by Madonna and I instantly have more energy, purpose and strength.
If you have never had a theme song, consider trying one out. It may seem silly at first, and you may have to play your song multiple times before you can call upon it at will. However, it just might inspire you to remember all the strength, energy and life that is already within you.
However, I have found that I cannot only watch but can actually enjoy legal shows that are ludicrous in nature. As long as the show exists in some sort of half-reality and is comedic in nature, I can gobble legal storylines up with a spoon. This is why I am a fan of shows like, “Drop Dead Diva” and “Ally McBeal.”
While “Drop Dead Diva” is more of a “guilty pleasure” (I take issue with that phrase, but that is a topic for another post), I actually think that “Ally McBeal” is surprisingly brilliant. The vulnerabilities and inner struggles of many of the show’s main characters often manifest themselves in larger-than-life ways. And while I am normally not a fan of magical realism (do not get me started) except when this tool is used exceptionally well, I believe that the show’s investment in magical realism is not just part of its charm, it often serves as an extraordinary manifestation of heart.
However, one of my favorite emotional tools that some of the characters on this show utilize is not magical at all. It is straightforward and can be used by any one of us during moments when we need a boost, when we want to celebrate and when we need to focus our energy in order to achieve an aim. This tool is theme music.
When Ally goes to see her nutty therapist about an inner struggle, the therapist insists that Ally needs to get herself a theme song. Ultimately Ally chooses “Tell Him” by Linda Ronstadt. When she needs courage, when she triumphs and when she needs to pump herself up, she begins playing that song in her head. Almost always invigorated as a result, she move forward onto whatever she needs to do next with more focus, vibrancy and life than she previously possessed.
Over the past few weeks, as I have begun to adjust to the ups and downs of feeling much better on medication but remain ultimately limited in a host of ways, I have called upon theme music and it has been surprisingly effective. At the moment, I have two songs that I am calling upon. When I am home alone and can dance out an entire song, I use “Shake it Out” by Florence + The Machine. When I have company or am out and about, all I have to do is start hearing the opening beats to “Jump” by Madonna and I instantly have more energy, purpose and strength.
If you have never had a theme song, consider trying one out. It may seem silly at first, and you may have to play your song multiple times before you can call upon it at will. However, it just might inspire you to remember all the strength, energy and life that is already within you.
Tuesday, January 6, 2015
Pain-Free and a Total Moron
My sincere apologies for my recent absence. I have been away on moron leave. Moron leave becomes necessary when doctors change your drugs up and said drugs turn you into a blubbering idiot. After my drugs were changed in December, I basically forgot an entire week. Thankfully, Mark assures me that though I didn’t “miss much” I was pretty fun to be around during my lost week. Given that I am a surprisingly fun while intoxicated, it shouldn’t surprise me that I am fun when I am a touch over-medicated.
Now that I am again intelligent enough to speak and write and remember what it is I have said, I need to share some incredible news. After 26 months of unrelenting pain and fatigue, endless rounds of steroids and other medications that have failed to work, my newest drug cocktail has made me virtually pain-free. That’s right folks, I said PAIN-FREE.
I should mention that my joints are really crabby when I try to run at this point. However, the rest of my body is only tired, not fighting pain. My bones don’t ache so badly that they wake me at night. When either I or others touch my skin, I no longer wince. My fingers do not throb throughout my workday. My feet can handle shoes with laces again. I take baths to relax, not to regain the feeling in my lower body. I have stopped losing entire days due to pain that is so bad that it makes me vomit.
And do you want to know what the most astonishing part of this entire transformation has been? While I am sitting in the car or knitting while watching television, my body starts to itch to get up and move. I am craving the experience of movement like others crave food. I want to write and move and socialize in organic ways I had forgotten completely. I have remembered all this time that I miss these things, but I had totally forgotten what it feels like to be truly energized and focused with such intentions. Above all, it seems that my pain has simply been a colossal distraction from the actions that once defined my experience and will hopefully define my experience again.
Now, it is important to understand that my pain-free state is likely not a permanent one. I cannot be on the drugs I’m on for more than a few months or I risk doing even more damage to some of my body’s systems than I already have. As a result, I plan to use my pain-free months as an opportunity to get as healthy as I possibly can so that when my doctors wean me off of them, my poor body doesn’t go as bananas as it otherwise would.
I am excited to share my journey with you as I pursue sincere health and wellbeing without being consistently distracted by physical pain. And I cannot tell you how grateful I am to have the opportunity to do so. Happy New Year, everyone.
Now that I am again intelligent enough to speak and write and remember what it is I have said, I need to share some incredible news. After 26 months of unrelenting pain and fatigue, endless rounds of steroids and other medications that have failed to work, my newest drug cocktail has made me virtually pain-free. That’s right folks, I said PAIN-FREE.
I should mention that my joints are really crabby when I try to run at this point. However, the rest of my body is only tired, not fighting pain. My bones don’t ache so badly that they wake me at night. When either I or others touch my skin, I no longer wince. My fingers do not throb throughout my workday. My feet can handle shoes with laces again. I take baths to relax, not to regain the feeling in my lower body. I have stopped losing entire days due to pain that is so bad that it makes me vomit.
And do you want to know what the most astonishing part of this entire transformation has been? While I am sitting in the car or knitting while watching television, my body starts to itch to get up and move. I am craving the experience of movement like others crave food. I want to write and move and socialize in organic ways I had forgotten completely. I have remembered all this time that I miss these things, but I had totally forgotten what it feels like to be truly energized and focused with such intentions. Above all, it seems that my pain has simply been a colossal distraction from the actions that once defined my experience and will hopefully define my experience again.
Now, it is important to understand that my pain-free state is likely not a permanent one. I cannot be on the drugs I’m on for more than a few months or I risk doing even more damage to some of my body’s systems than I already have. As a result, I plan to use my pain-free months as an opportunity to get as healthy as I possibly can so that when my doctors wean me off of them, my poor body doesn’t go as bananas as it otherwise would.
I am excited to share my journey with you as I pursue sincere health and wellbeing without being consistently distracted by physical pain. And I cannot tell you how grateful I am to have the opportunity to do so. Happy New Year, everyone.
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