Those of us with rare diseases are called “Zebras”
More than a few
weeks months ago many of my “zebra” friends rolled out their blog entries and traded website buttons to join the efforts of the National Organization for Rare Diseases as they commemorated “Rare Diseases Week” on Capitol Hill. I was one spellcheck away from hitting “publish” in order to to contribute my own two pennies to help raise awareness that there is actually an organization for people who, like me, confuse their doctors and make them say things like “you are making me punch above my pay grade.” NORD offers advocacy, research, guidance on healthcare, and if nothing else, a great tagline (“Alone we are rare. Together we are Strong”) which reminds me that 1) I’m not THAT special and 2) I’m not alone on this strange journey of unusual illnesses. But life and work and my own rare diseases conspired against me and I watched the February deadline through the rearview mirror of the ER suite I was occupying. I’m hoping that by publishing now, I will help to sustain the momentum generated by their efforts and do my own little part to keep the conversation going (See, this is really a better plan anyway.)
And, talk about great planning, as luck would have it, April is designated as Primary Immunodeficiency Awareness month. I’m sure you already knew that. It also happens to be the designated month for Autism Awareness, Distracted Driving Awareness (and I’m typing this in the car), Jazz Appreciation Month, and National Poetry Month, to name a just few…..as well as some more obscure awareness campaigns like the “National Growing Naturals Day” and “Records and Information Management Month.” And thank goodness it’s also “Stress Awareness Month” because making time for all of this celebration and advocacy is stressing me out.
Back to advocacy and awareness. As I said up there (↑) – April being Primary Immunodeficiency month works out to be the perfect time to re-engage with this community that I’ve come to love. If this is your first time visiting, you may want to start HERE to catch up a little. And you certainly haven’t missed much recently, as it’s been awhile since I’ve posted, and I appreciate the gentle queries as to how I’ve been. I’ve definitely experienced some stomach-churning writer’s guilt for making new friends and then disappearing on you. I’ve missed the interaction and the information exchanged in this community, so this is my attempt at re-establishing some regular posting. The answer (to your questions) is that things have been pretty typical for someone riding the autoimmune wave, with good days and bad days, and then whatever that level is below “bad,” because there have also been a few of those, too. And as long as I’m whining, I’ll admit that I’ve been a bit stuck as to how to proceed, especially given the ACTUAL NAME of this blog.
I began writing last year to share how we eventually reached the diagnoses of my own “rare diseases,” hoping to provide a landing place for others who found themselves googling things like “abnormal liver function tests” or “symptoms of lyme disease” or “chronic UTI’s” or “immune deficiency.” In my case, I had to doggedly pursue explanations for the physical symptoms I was having while yielding wonky lab results that confounded my doctors. I could have used advice paired with hopeful reality during that super fun limbo period when I had a tsunami of what appeared to be unrelated symptoms that no one could explain.We eventually discovered that those symptoms were. not. unrelated. but are rare enough that the likelihood of finding someone with the same potpourri of illnesses who also happens to blog about them is about as likely as my sons voluntarily replacing a toilet paper roll. I eventually got answers, but I would still be in limbo had I not stumbled into an online chat room that led me to the doctors who finally able pulled everything together and drafted a treatment plan to address my symptoms individually and my health as a “whole.”
I chose the name “Embracing Plan B” from a list of workable titles that were beta tested on various
victims friends and family members. Titles like “living the life you didn’t expect” or “living well in spite of liver disease” or my personal favorite, “suck, it, liver disease.” Don’t get me wrong, I do enjoy throwing up a middle finger at my condition – as I did when I rode the Rock – N-Roller Coaster on Monday despite the warning that those with “fragile health shouldn’t ride.” But it isn’t how I want to live day to day.
When I set out to write about this crazy ride, I felt that the act of embracing could set the tone for the way I want to live under this new normal. Embracing – which is very different from surrendering – implies a sense of welcome. “Okay. You’re here. Let’s do this.” When you embrace change, you stop railing against it, and open yourself to the possibilities wrought by the new circumstances– whether it’s new friends, a new community, or a new appreciation for boring days with no appointments. Elizabeth Edwards defined resilience perfectly when she said that “Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”
Even an unwelcome diagnosis provides occasions to throw confetti during the storm. The “in spite of” title came very close to “winning” because implies a fantastic stance of defiance, but for me, it fails to convey the tone of “shalom” that I’m trying to establish as I re-invent my life with multiple diagnoses.
Embracing my “Plan B” was made possible because of the tribe that surrounded me. They nurtured a posture of resilience by feeding my family, sending motivational socks and jewelry, finding uplifting and perfectly-timed books to equip me for the “battle du jour,” and most importantly, by offering a soft landing when I need(ed) to fall apart.
I now see the irony in the fact that choosing the title (and paying for the url) of “Embracing” has also provided a net of accountability… especially when I stumble through a season where “embracing” looks a lot more like hiding under the covers and eating cheez-its. I’ve been doing a lot less “embracing” while trying to extract myself from the headlock my illness seems to have me in, and my spirit of resilience has been ignored rather than nurtured – because it’s easier to retreat from the world and avoid both limbo and reality by waiting to see if a frigging giraffe would JUST GIVE BIRTH ALREADY
(she doesn’t, by the way) (Wow – things have changed! See below) and wishing Pinterest would hire me.
Click HERE for more of Christine’s art. All proceeds for the giraffe, called “Delightful Distraction” go to the American Liver Foundation.
But there it was again, staring me in the face, a WordPress invoice reminding me that it was time to “re-up” and pay the annual fee. As I contemplated just shutting the whole site down, some perfectly phrased emails with timely words of inspiration found their way to my inbox, reminding me that I can choose my response, even if I can’t choose my circumstances, And then….someone painted me a picture. A beautiful artist friend who radiates light and love and creativity, created for me my very own giraffe WHO IS NOT PREGNANT and will not cause me to waste my precious time. The holy triad of WordPress fees, inspired emails, and virginal giraffes have helped me turn my face to the sun and try to re-orient my posture to pursue joy. It’s time to Embrace again.
I recently completed 16 weeks of aggressive treatment for the lyme disease that hates my bladder and hurts my liver (and I will of course write about in the coming weeks with a clear warning before I continue oversharing about tinkle). And the treatment was mostly successful, though it also carried a risk of infection that (of course) sidelined me exactly 48 hours before a business trip and landed me back in my favorite ER. But I did it (like a boss) and you will hear about it, because it was a groundbreaking and revolutionary treatment for those of us in the Lyme community. And despite the temporary complications, it mostly worked and it helped us to cross one of those issues off of the “triage” list.
And because there are no limits to do overs I’m going to try to throw off this mantle of gloom and see what “Plan B” has in store for me. Did I mention that April is also my birthday month? I’m closing out my forties this year, and just saw this quote by one of my favorite doctors. Brené Brown (Ph.D.) said that “Midlife is when the Universe grabs your shoulders and tells you “I’m not f-ing around, use the gifts you were given.”
So here we go again. Doctor’s orders.
So much love,
P.S. Click here if you need that link to “Stress Awareness Month.” Who wants to be aware of stress? Isn’t that the whole point of emotional eating?
Who thinks “Bunny” is a good name? Or, for a boy – “Peter”
P.P.S. Well. I guess I should have published this two months ago when I first drafted it. As soon as this hit the inner webs, that giraffe went into labor. I’m sure I had something to do with it. Any overdue mamas out there? I have another blog ready to post.
More about Jenny here.