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.
Sunday, November 15, 2015
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!)
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