Plan B

*Note: Thank you for your patience. I haven’t been writing lately because I have been spending most of my non-working hours sleeping, vomiting and laying on ice packs. Woo hoo!!!*

While I was sitting in my rheumatologist’s office very recently, my brilliant and absurdly lovely doctor asked me what has been bothering me about my condition the most lately. I know that she was expecting me to say pain or fatigue or some other physical symptom. “I’m boring,” I blurted out. “I’ve become so boring.”
“Boring?” she asked.
“I used to be this active, engaged, ambitious person. My life has become this condition. It is what I think about, talk about and write about. I am too sick to do anything interesting at all aside from reading. I don’t go out, I can’t make plans. I have become extraordinarily boring.”

By the end of the appointment, I had referrals for biopsies (annoying, because I oddly resent being cut into, even if it is for my own good) and even more blood work. My condition has gotten so nasty that I’m being prescribed drugs (to be started tomorrow) that promise to make me feel much worse before I can hope (fingers crossed) to eventually feel better. My quest to avoid these drugs has come to an end for now… because it turns out that they are now unavoidably necessary.

I am not cleared to train right now (although I am still signed up for a 10-K on August 30 and the Twin Cities Marathon in October) and I have turned into a boring sick person. It is now officially time to launch… (imagine a loud, imposing, echo-y voice) “PLAN B!”

“What is Plan B?” you ask? Plan B is a healing plan that does not involve marathon training (at the moment) but does involve learning how to be an engaged, ambitious and interesting person even while I am sick, sick, sick. Here are the beginning outlines of Plan B:

- Attend restorative yoga class (and hop in the pool) on each day that I am not flat on my back, throwing up uncontrollably or both
- Meditate daily… both guided meditations I own and love and the meditation work I am being prescribed as part of my treatment at the pain clinic
- Read loads of interesting books and periodicals
- Continue to outline my creative fiction work… I may be too sick to write on many days, but I’m not too sick to dream up work to write down later!!!
- Blog twice weekly as promised, refining and exploring Plan B as I go
- Become even more well-versed in a healthy, clean, anti-inflammatory and anti-cancer lifestyle than I am now and put these principles into use as much as I physically can on any given day
- Remember that I am not a boring person and that this condition does not have to turn me into one anymore

A little over two weeks ago, I told you that I would be introducing you to my new plan after receiving the news that I was no longer cleared to train, that my condition is progressing and that I’ve developed fibromyalgia to boot. Well, I’ve gotten much sicker since then so my new plan has evolved. It doesn’t seem particularly bold or shiny right now. But I have a hell of a lot of faith that it will give me a foundation upon which to reach for an increasingly bold, shiny and healthy life.

Thank you all for bearing with me as I’ve become increasingly boring. I promise that even if I (GOD FORBID) get even sicker that I will not remain this way. I’ve got one life and I have too much to say and learn and do to stay boring for long.

Learning (Again) to Kick My Own Ass

As most of my readers likely know by now, I became pregnant with my daughter Samantha when I was only 17-years-old. I took a pregnancy test on my lunch hour and then promptly reported to my fifth period class, during which I failed a test for the first and last time in my life.

It took me about a week to get past the shock of it all. And when the shock wore off, I did what I always do in times of uncertainty… I gathered every book I could carry on the subject of pregnancy and motherhood and I began making calls. I got a mentor (who would later become Samantha’s godmother) and I started taking classes through my school, the county and the hospital. When a challenging situation arises, I tend to lean heavily on all the resources I can possibly juggle and I set about educating and otherwise preparing myself to do the absolute best I can and to be the absolute best I can be.

Have you ever behaved so-unlike your usual self that you’d like to give yourself a good slap? Since the news that my disease is progressing, that I have to stop training for now and that I have fibromyalgia to boot, I’ve been quietly planning and resetting my goals. But I’ve also basically stopped sleeping because by the evening time my bones usually hurt so badly that it feels like they are throwing up… if that makes any sense. And with the sleep deprivation comes a lack of motivation to put my planning into place. Who is this woman, I ask you! All plan and no action… absurd.

At this point, I understand that planning means nothing if I don’t put it into place. But when I sit down to figure out how to kick myself in the ass, I’m inevitably distracted by the fact that it feels like all my fingers are badly sprained or that my ears hurt too badly to have both my glasses and my headphones on at the same time for more than an hour or so. I feel like my disease is getting the better of me… and that just will not do.

So… I am placing power in the art of accountability. I am vowing to you, my loyal readers, that I will write two blogs next week… one which details my plan of action and one which indicates how I am going to go about staying motivated (or something along these lines). I can’t seem to get my rear in gear… but I have a great deal of confidence that holding myself accountable to you all will help me re-learn to kick my own ass. And it turns out that this is a very valuable tune-up lesson indeed. Hugs and winks to you all until I write again this weekend. Feel free to wish me a silent good luck for this week’s rheumatology and pain clinic appointments! (And good luck for St. Patrick’s Day… Mark and I postponed Christmas until St. Patrick’s Day this year and that boy is notoriously difficult to create gifts for!!!)

The Way and the Art of Navigating Contradictions

Lkjaflkfjlklkdfskl;dslkd. No, this is not a typo. This lovely string of nonsense is evidence of what it has been like to write about being diagnosed with yet another autoimmune disorder while being told that the first one is rapidly progressing. I have tried to write my follow-up blog to “Oh, Bother” probably 120 times. But I have stopped myself words, sentences or paragraphs in, every single time.

When I started this blog, I had clear objectives and clear goals I was working towards. But it turns out that right now, all the goals and objectives I’ve been given by a number of wonderful doctors (whom I do sincerely trust) seem to be contradicting each other.

For example, I was recently told that physical movement is critical to remaining as healthy as possible in my current physical state. But I was told that my inflammation rates are so incredibly high that I should avoid yoga (I apparently have significant evidence of hypermobility related to the lupus and have been told that I could easily injure myself doing yoga), running/cardio (my heart is currently uncooperative) and strength exercises (muscle tissue in certain autoimmune patients can apparently reorganize incorrectly and inefficiently following exercise… I don’t fully understand this one and will be talking to the physical therapist about this soon). So… you want me to move, but I am supposed to avoid stretching, cardio and strength training. What am I missing here?

This is just one example of the kinds of contradictory medical advice I am currently weighing while determining my next moves. The problem is, all these contradictions are making it difficult for me to feel confident in making any actual decisions about my health. And even if the advice was more straightforward and consistent, should I follow it to the letter or rebel like so many people I admire who have taken their recovery routes into their own hands and charted their own courses with great success?

After days of indecision, I began to feel comfort and confidence in revisiting one of my favorite Eastern spiritual/philosophical approaches. It will stun none of you who know me well to learn that during this period of indecision I have been consulting every book I love dearly that could possibly lead me to some sort of peace and enlightenment. As a former religious studies major, I have been pouring over my texts on religion and philosophy in addition to my books on health and wellness. And I ultimately found a glimmer of the wisdom I am seeking in one of the most fundamental elements of Taoism.

Put simply, Wu Wei is the idea of non-action. However, the concept of non-action is not one that is necessarily passive. Rather than meaning that one in harmony with this concept should take no actions at all, the concept is rooted in the idea that one should behave in non-contrived, non-forced and wholly natural ways of being. For example, a flower does not analyze how to grow, it simply evolves, adapts and grows as a natural output of its being.

I am struggling. I am struggling and worrying and overanalyzing every aspect of my diagnosis. And because the medical community has provided me with so many contradictory answers on how to proceed with my care, I was initially left with temporary paralysis regarding how to move forward at all.

However, there is comfort to be had in the idea that if I allow myself to be quiet, to listen to my body’s signals and to derive my approach from what feels most naturally healthy to me that I can begin to move forward.

My body and I have some trust issues right now, but I believe that these issues were partially created simply because this journey of diagnosis and care has been fraught with chaos. In listening to all the advice my doctors have given me, I have only felt worse and required more medication and more treatment. I do not blame them for this one bit. Who knows if the outcome would have been even worse, had I not listened? However, it is important to me moving forward that I begin to trust myself again as well as trusting my doctors. Deriving my future care plan both from a place of expertise (my physicians, physical therapist, etc.) and a place of self-trust and actualization seems to be the best way to embrace the harmony derived from Wu Wei.

I doubt that I am through struggling mentally with this latest turn of events. However, I am approaching my next steps secure in the understanding that struggling itself is doing me very little good. I have already come to some conclusions about what physical, mental and emotional actions may best serve me in the immediate future as a result of the peace that revisiting the concept of Wu Wei has granted me. I hope you’ll check back in during the next few days as I begin to share what I have been thinking.