Role Reversal

joyIf you are following my story and don’t want to read about tinkle, then just stay on this page and you won’t have to hide your eyes, because this post is G-rated, and a bit more serious. I was asked about this recently – the phenomenon of going from careGIVER to care receiver, and I had a lot of time to ponder it on Tuesday when I was inside what author Kara Tippetts called a  “Scary Snort” for a couple of hours in the midst of yet another diagnostic test. (The “Scary Snort” phrase comes from one of my favorite books, Are You My Mother? when the little bird is scooped up into a steam shovel. MRI machines and CT scans feel like Scary Snorts.)

One of the strangest parts of this whole journey has been the role reversal I have experienced as I left ministry and the almost constant role of careGIVER, to become a care receiver. My tenure in ministry placed me in the position of walking with people through some of the hardest – and some of the best – experiences of their lives. I have prayed, and cried, and slept at the bedside of many. I have helped people to fill out Living Wills and detail their funeral wishes should the worst happen…and when the worst DID happen, I arranged funerals and held hands and made casseroles and I knew, beyond a shadow of a doubt, that this was sacred work. I was invited “beyond the curtain” into the hardest of hard for some amazing people, and I can admit today that my competence in these situations probably puffed me up a little….too much.

Because suddenly, I couldn’t do it all. Almost overnight, I could no longer keep up. I couldn’t work AND cook dinner. During what I fondly call our “diagnostic limbo hell,” and weeks turned into months, my pain increased and my energy decreased, and just likpumpkine that I was deciding whether I had the energy to wash my hair or watch tv with my kids. (And let’s face it, hair matters. As does mascara.) My tribe recognized it before I did, and they forced nudged me to ask for help.

All I had to do was send a text and the problem was solved. Meals poured in, as did treats, and gifts, and flowers, and cupcakes and dry shampoo, and I no longer had to feel guilty about ordering take out again, because we could sit as a family and eat real food, and know that we were loved – very  dearly. But hitting send on that first text was monumental, and I felt defeated, because so much of my identity was wrapped up in being the capable caregiver (I think the “Capable Caregiver” needs a Cape.)

But sitting in that foreign  space of receiving care  reminded me that my identity is not based on my ability to create a sign up genius for casseroles, but rather fixed as a part of a loving community of people with whom we laugh and snort and cry and hurt as we do life together. I am so grateful for my tribe, but I am also grateful for this trial that reminded me that my identity is not about what I can do, but rather who I belong to.

And in the midst of this divisive political climate, I can look at my tribe and be assured that this still the best work a community can do – to hold space for one another as babies are born, as loved ones pass on, as they receive a diagnosis – this is the good stuff of community.

 

 


Playing Eternal Whack-A-Mole or, in other words, Jenny’s Guide to Managing Multiple Diagnoses

I was completely floored by your response to my blog. Friends, and strangers new friends, connected to my story in a way that was wholly uplifting, and utterly humbling. As I had suspected, there are many silent warriors craving the connection of a shared experience , which makes me beyond grateful for the friendships forged by this new community. BTW – I just published my latest resource page, explaining my diagnosis of Nodular Regenerative Hyperplasia in addition to the Primary Biliary Cirrhosis. I am one of “10’s” of people who have both diseases.

whackamole

Which ailment is causing trouble today? It’s much easier when only one pops up at a time…

One of the hardest parts of this journey is the sheer enormity of learning to live with multiple illnesses. It is an eternal game of “whack-a-mole,” trying to figure out which ailment is popping up today. Last night, for example, it was the PBC that kept me awake with pruritus,  severe itching that often accompanies liver disease, as well as nausea and pain. And can I just tell you how completely freaking hard it is to keep your mind from racing ahead to the worst case scenario when everyone else in the house is sleeping peacefully. How RUDE!

It has taken months of self-discipline to juggle the constellation of issues I’ve been given. When all of this began, I would wake up with a myriad of symptoms in the middle of the night, and immediately grab my computer and start Googling. As you can imagine, this was a very

googling-your-sickness-funny-facebook-status-quote

I wouldn’t know anything about this.

effective way to multiply my problems, with the results being:  1) whatever was actually causing the symptoms
2) insomnia and 3) anxiety. Poor Jim would wake from a deep sleep to find me crazy-eyed, self diagnosed with stage four cancer, tennis elbow, and ricketts…and in the throes of planning my funeral. #kiddingnotkidding

Luckily, last night, my new “tricks” worked and I got back to sleep relatively quickly. And, while it still SUCKS, it sucks so much less than it used to. (I know that my mother is DYING right now because I keep using the word “suck.” If you are with her, please take a picture of her face.)

Having “competing” illnesses is exhausting and unrelenting. (Does anyone else see the irony in the fact that I used to brag about my ability to multi-task?) Realizing that you have lost the freedom to live the life you had planned is extraordinarily difficult – no matter what the root cause is, and for me, it prompted a season of grieving. It is also just not enough to learn to live “with” your diseases. The real challenge is to live well alongside – and IN SPITE of – your illness. This looks different for each of us, and for me, includes learning to advocate for myself and others.

What is no longer ambiguous are my life’s priorities. I lived many years as a “pleaser” and a bit of a perfectionist (A likely hazard of being a preacher’s daughter. Amen?) but it didn’t take long for God to haul clarity into my life and give me permission to say “no.” There is simplicity in living smaller during this season, and I feel no guilt about drawing into my immediate “circle” to ride out the latest crisis.

What has emerged from this chaos is a new rhythm to life that is working for us, so I thought I’d share  “Jenny’s Guide to Managing Multiple Illnesses”

  1. Give yourself time to grieve – in your own way However it looks, however long it takes, you need to process the news. For me that almost always includes eating something I shouldn’t and using my illness to make my kids watch something they otherwise wouldn’t. Don’t hesitate to grab your stomach and moan, it has amazing power. Most of all, be gentle to yourself. Call on your tribe for prayer, cry with a friend. You will know when to emerge and fight.
  2. Educate yourself and get support. Learn about your illness from reliable sources- I go straight to the Immune Deficiency Foundation and the American Liver Foundation, bypassing webMD. I make use of their online support boards so that I can process with people who’ve gone before me. And I appreciate the fact that these boards are password protected and moderated by professionals, and are therefore not targeted by internet “trolls” looking to peddle products or to simply cause trouble.
  3. Prepare for emergencies. I have a medical notebook that we can grab if we have to medical-bindermake a run to the doctor/emergency room. The first page is a “one sheeter” explaining my diagnoses from my doctor in order to help the treating physicians understand the complexity of my situation.  (Jim just told me to reiterate how important it is to have your doctor write up the diagnoses and treatment protocol. Make multiple copies of your “one sheeter” – I even laminated mine.)   I then have the following sections:
  • Current Medications/dosages
  • Allergies
  • Directory of ALL of my doctors, pharmacies, and their addresses & phone numbers.
  • Directory with family names and contact information
  • Descriptions of each illness.
  • User names and passwords to online patient portals (this will help you access lab results)
  • User names and passwords for social media and email.
  • Copy of my driver’s license and insurance cards.
  • Reminders – to bring chargers, cash, and reading material.

Creating this binder empowered me during a season where it felt like control was slipping from my fingers daily. The “one sheeter” was my husband’s idea and I cannot emphasize how helpful it has been.

  1. Track your symptoms….and then try to forget about them. I use my Google calendar to record medication changes, symptoms or questions that arise between appointments. The calendar is accessible by phone and provides information about health literally at my fingertips.  I use Google calendar, but I know others use journals or notebooks to log their progress. (Your system is only effective if you use it.)
  2. Give yourself some structure. I was used to living life at a fast pace, and thrived under
    swing

    Don’t you think a swing would make my liver feel better?

    the adrenaline of tight deadlines and high expectations. And practically overnight, simply getting a shower became taxing and making it through a workday was impossible. I found myself bewildered by my lack of productivity, especially during the months where I couldn’t even fix dinner.  I began to use  a habit tracker to build in some routine and stave off the banality that came from living life “horizontally.” As I’ve gotten stronger, I have adjusted the tracker to include my “new” abilities and to remind myself to strive for balance no matter what “season” I’m in.

lobster

Lobster Jim never fails to crack me up…

6.Throw some confetti. Author Margaret Feinberg writes that “More than whimsy, joy is a weapon we use to fight life’s battles” and C.S. Lewis describes joy as “serious business.”  Be intentional in a daily pursuit of joy, for yourself, and for those around you. Find ways to throw confetti on the mess and celebrate the small, daily graces that would have previously been bypassed. Throw a Monday night pajama/ ice cream/movie party. Bring cookies to your doctor. Turn a day in bed into a Harry Potter marathon. Remember the wisdom of Buddy the Elf, who taught us that singing powered his sleigh. Light candles and put your favorite music on while doing the dishes. I have the best “joy teacher” in the world in my spouse. He has an amazing knack for reading the situation and knowing when we need an infusion of joy. He has, however, been forbidden from EVER AGAIN SURPRISING US ON CHRISTMAS MORNING WITH THE NEWS OF A PUPPY.

joypuppy

All future joy purchases need to be discussed…Can you tell  how angry  I am?

7.Shortcuts, baby. The internet has like…..everything. Make use of the shortcuts that are available to us on a daily basis. I do everything online – from ordering groceries (thank you,Peapod) to Christmas shopping. Spend the time upfront to organize and automate your lists…you will be so glad you did.  I keep a few 5 minute meal prep items on hand for tough days, and I sync my lists with my calendar so that I know when to submit grocery orders for Thanksgiving and Christmas. These tricks have helped us to maintain some stability during times of upheaval.

These are just a few of the strategies that help reign in the chaos when the “moles start popping up.” I’d love to hear your tips on managing multiple issues!

Before I go –  I want to be very, very clear about something. I know that in the scheme of things, my suffering is nothing compared to others I’ve come to know, which  was one of the barriers that kept me from publishing my story. Even now the doubts arise as to “how DARE I write about how difficult MY life has been, when it so often looks like a storybook from the outside.”  What finally convinced me was the rarity of my illnesses and the lack of available resources and support. And I will continue to pray that my words will reach someone seeking answers, or trying to regain their footing amidst the bewilderment of a new diagnosis.


Resources from today’s post: 

IG Living has a great article on living with multiple diagnoses

Margaret Feinberg’s Fight Back with Joy was the perfect antidote to bad news.

feinberg


Embracing Plan B (and no, it’s not about birth control)

Allow me to introduce…my blog. This has been a long time in the making, with my tturtleribe rolling their eyes as I’ve cried “publish” more than once a dozen times. (Does the blogging world really need my voice? Who am I to think people will want to read anything I have to say?) I decided it was time to go public when I had another appointment last week where the doctor was stumped by my diagnoses….because they are rare, they are complicated, and yet I look like the picture of health (most of the time). Many of you know me as mom to my boys, wife to my Jim, or as an advocate for children and families, but only some of you know that I juggle multiple diagnoses, operating under the “spoon theory” of living with more than one disease.

transitionAs I’ve looked for resources amidst a huge void of information about some of my conditions, I realized that my story may actually have value for someone else. And thus, “Embracing Plan B” was born. I took what I thought was a leave of absence from a career in ministry last October to get well and figure out my next steps. What I never saw coming was the reality that my “new” symptoms were connected to diagnoses that are here to stay. Or that sometimes, one diagnosis piles on the other, and like a domino effect,  cascades into my day, causing me to trip over them and start over. One day I woke up and realized that this was my new normal. And while it was hard, it was also beautiful – because friends and family parachuted into this “hard” with casseroles, prayer, honey baked ham, jewelry, pajamas,cupcakes, soup, and even inspirational socks to remind me that I am not alone. Oh, and cupcakes.

strongfeet

Even my feet remind me that I can do hard things!

When you Embrace Plan B, you know that a good day is a day to be soaked up and rolled around in…and a bad day doesn’t mean the end of the world, but is a clue to listen to your body and pull back. You also learn that a good day has its limits, so you shouldn’t try to DO! ALL! OF! THE THINGS! but rather, enjoy it while conserving some energy for tomorrow. (I still have some work to do on this one.)

When you Embrace Plan B, you reevaluate your career, and launch a new business, under your own terms, with the bestlooking business partner, and you become creative with the hours you DO have – because circumstances can change on a dime, and gifts that aren’t used are wasted.

When you Embrace Plan B, and you were previously a bit …..structured…..resilience becomes your mantra, flexibility your new badge, and when simple days collide with feeling good, it’s pure sweetness.

Swimmers take your mark.

More about Jenny…a little history