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.
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
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”
- 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.
- 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.
- Prepare for emergencies. I have a medical notebook that we can grab if we have to make 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
- 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.
- 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.)
- Give yourself some structure. I was used to living life at a fast pace, and thrived under
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 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.
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.