I really am here….

The calendar tells me it’s a big week, and I find myself paying attention to the commercials that promise a cure for “crepey skin.” The AARP flier should be a kick in the gut, but I’m thrilled to be crossing this milestone.  Get a glimpse of the alternative and suddenly 50 is a number I’m glad to see. When I last wrote, I was struggling mightily because we had yet to get approval for my immune-globulin infusions. (My “globulins.”)  All I could manage was a little work, a smidge of self-care, and stacks of apologies for forgotten appointments, unreturned phone calls, and incomplete projects. After being in “remission” for my CVID, the lack of treatment woke it up, kicked my hiney, and made my world very small. I had great plans to bring you up to speed on everything else, but that whole hiney-kicking thing made it impossible.

Despite the CVID-induced fatigue, I carefully guarded my “spoons” and was lucky to be able to travel to Ohio to “shower” our son’s bride-to-be with a party that would make Martha Stewart run crying from the room. (This all due to the magical touch of Kaitie’s Aunt Jill, whom I have decided to be related to because she makes the best icing I’ve ever tasted. Which basically makes her the best person in the world.) The end of the magical weekend ended in true Cudahy fashion. My plane landed in Charlottesville, where I raced to the emergency room to spell Ryan who had been caring for Dylan…who had succumbed to a bout of norovirus that was reminiscent of that scene from Witches of Eastwick. Google it if you don’t know what I’m talking about.

We are getting a daughter. How amazing is that?!

To continue our audacious February, despite the metal mask my mother made me wear and the gloves that never left my hands, (okay the mask wasn’t metal but it was supposed to be really good), and despite Dylan and I NEVER being in the same room during his convalescence, I began my own version of the technicolor yawn and Ryan got to chauffeur another Cudahy to the ER for fluids. And on it went. You know who fell next. Homeland Security just approved us to be part of their germ-warfare strategy, because we are nothing if not EFFECTIVE, leaving trails of….um…..DESTRUCTION, all over Virginia.

I am thrilled to report that I DID finally receive my immune-globulin infusions and my energy is gradually returning, my legs are “back.”  I’ve fought off multiple kidney infections and have kicked norovirus to the curb, and we are hoping that spring is more than a new page on the calendar, but also representative of the season that WE ARE DUE.

Stay tuned for updates on lyme treatments, liver disease, upcoming nuptials, and more. So much to say. We need to have coffee.

 


Lakes, Ribbons, and Changes

Has it really been since May, when the baby giraffe was new and summer was just beginning?

 

I began writing last year to share my story of an unusual path to some unexpected diagnoses – a place for seekers to land when they google things like “liver function tests” and “lyme” and “immune deficiency.” It took more than two years to untangle my myriad diagnoses, and I could have used information paired with hopeful reality during the fun months of limbo where we had no idea as to what was going on. My issues are rare enough that the likelihood of finding someone with the same constellation of illnesses who also happens to blog about them is as likely as my sons voluntarily replacing a toilet paper roll. (And Kristina Alcorn, I had already written this when you posted about this same topic on FB)

 

lyme-slices-for-successful-treatment-recipe-e1466303620638-660x330I chose the name “Embracing Plan B” from a long list of titles – things like “Living the Life You Didn’t Expect” or maybe playing off the lyme theme with something like “When Life Hands You Lyme” or my mother’s favorite which is “What to do When it Seems Like Everything is going to Hell” but that one didn’t really convey the open posture and positive vibe I was going for.

I hoped that the act of Embracing could set the tone for the way I hope to live under a new normal. Embracing is different from surrendering…. or even accepting. Embracing implies a sense of welcome. Arms opened, hands outstretched, proceeding with acceptance while seeking a silver lining. Settling into a new normal the way we sink into the comfy chair. When you embrace change – any change – you stop railing against it, and you open yourself to the new opportunities the change brings. Even a diagnosis provides opportunities to find joy if you are determined to throw confetti during the storm.

My type A self found satisfaction when plans unfolded….as planned. When hurdles were jumped, contingencies mapped, and budgets met. But more often than not, life rarely happens according to plan, and in order to survive and move forward in any area, we have to nurture (and embrace) a sense of resilience.

But, if we’re being honest here… it became harder and harder to write because we had a year where the unexpected came from every direction. Where almost every single corner of life was in limbo, and writing it all down made it much more real. I’ve re-started this blog so many times I’m like a teenager learning to drive a stick shift. But every time we flipped the page to a new month a new issue cropped up. Lyme and its companions have so profoundly affected my family that the last thing I wanted to do was to write about it during my spare time. But a recent visit to our family doctor reminded me that I was gifted with a voice, a laptop, and an annoying habit of googling things and telling everyone about it; because he very humbly shared that the events of the past year (among my own family) has changed the way they view, diagnose, and treat Lyme disease. We’ve shaken them to the point of seeking additional training, and they’ve asked us to use our voice to seek funding for education and treatment, so perhaps it’s time to get back to this.

And when we do finally get to the end of the story of 2017, you’ll understand why my writing has been so unpredictable. But now it appears that I need to get back to this place, where I share how Immune Deficiency, Liver Disease, and Lyme collided in a way that answered many of my questions, but also raised more than we ever imagined.

And when you ARE sick…life would be so much easier if you could just freaking be SICK. But it seems that you still need to make a living, feed the children, pull the weeds, and sort the socks.

But since we last chatted, we’ve launched a new business, sold one home, and found

lake

More on the new place…let’s just say the view looks like this, and all are welcome 🙂

another. We’re chasing a lifestyle that feels simpler, and is allowing us to make a living, feed the children, and pull the weeds. And ever since we unclenched our fists and said “yes” to this new idea, and embraced the fact that this story – OUR story, was going to be an honest part of our future, the doors have continued to open.

 

Right now, three of us (AND OH MY WORD ARE WE MISSING THE OTHER THREE) are in Maine. The place where my soul lives. (At least until August 21st – when my body and belongings will move to another place that feels very much like Maine, and also very much like YES. More about that later. Back to Maine.) Here Jim, Dylan, and I are recovering from the craziest nine months we’ve ever experienced.

We go to sleep to the sound of rain on the tin roof, and wake to fog lifting over the water, the dock inviting us to bring our coffee down. We watch Dylan do his dryland routine on the deck, and dive into ice-cold Maine water to get stronger and chase his dreams, stroke after stroke. As you may have noticed, 18 year olds who are about to go off to college tend to be extremely smart, and are definitely wiser than their ancient parents. Dylan does not escape this same sense of “worldliness” that must make it really difficult to tolerate us.

mom and dylSo please don’t tell him until much later that he has joined the ranks of those I call hero, demonstrating resilience, wisdom, and a depth of character revealed by months that forced all of us to dig deep, try again, go against the grain, and find new paths through uncharted waters. Which is why it’s so good that we are here. In waters that we know. Suspending time for just a little bit longer before

Honey

I think we’ll handle the empty nest just fine. As long as we get Jim to use sunscreen.

we send him off to “go get it.”

So it seems that I am back, you will here more about our story, and I will keep talking about Lyme – how to fight it, how to find it, how to prevent it, and how to live with it. But for now, for a few days, our youngest is still with us. And because we’ve done this a few times now, we know that these few days are just a little sweeter. Here he comes now, wearing only a speedo, sperries, and a backpack, and looking a little bit ridiculous. And I love it. Talk Soon.

So much love.


April, Zebras, Pregnant Giraffes, and I’m Back…

ivig

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.)

cvidAnd, 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.

zebrasBack 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.

limbo4I 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 unboundexpect” 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.”

flowersEven 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.

nothingforgrantedEmbracing 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.

 

Jenny's Giraffe

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.

supergirlI 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 despitPhone Downe 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,
Jenny

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?

baby

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.

 

 


Finding the Sacred in Packing Up Christmas

Putting away our Christmas decorations makes me pathetically nostalgic. I am the rare one who enjoys this task. As I carefully wrap the Disney ornaments,and the Dixie cup bells, I mentally review our time together, and whisper a doxology of gratitude that another Christmas has passed with our family intact, and fully present. (And I never, ever,

dixie-cup-bell

This is a replica. You get the idea.

EVER take that for granted.) I gather up the stockings and the nativity sets and cast my prayers into the new year, begging protection and healing, and let’s be honest, success, for my people. I have even tucked notes into the rubbermaid bins…reminders to be grateful that I “get” to be present, unpacking a marriage worth of ornaments (because, you guys, my husband has an ornament problem.) This year the gratitude was a bit harder to muster, tangled with setbacks and let downs, diagnoses and water damage. And Donald Trump. But because gratitude precedes the miracle, I finally offered a litany of thanks for the people that we do life with, because I know how quickly that can change.

last-day

Last family picture in a well-loved home.

We moved to Northern Virginia from Charlottesville five years ago. We left with hearts forever grateful for the life we built, the friendships formed, the jobs we loved, and a close-knit swim community that dictated like….everything. Charlottesville was very, very good to us. And when we moved to Herndon, I was in the right mindset, ready to “begin again” assuming that we would pretty quickly build a new tribe. I knew it would be difficult, but I was mentally prepared to resettle us and do the awkward work of forging new relationships. Yet I failed to include in our  plans the e-coli infection that would land me in the hospital two weeks after the moving truck pulled away, changing not only the course of my life, but also limiting  our ability to assimilate into our new community.

bake

We may not be crafty, but we sure can bake…

My Charlottesville tribe knew me as an active mom, an overzealous passionate swimming advocate, a devoted employee. A crazy neighbor. I often feel like my identity here offers a stark contrast, because all I’ve known since August 2011 is a near constant battle to regain my health. I originally thought there would be some type of “bell-ringing” after I recovered from the e-coli infection, some attainable end point. But the reality is that I have been a “patient” for five years, and as we’ve untangled the enigma that is my weirdo body, I’ve had to accept words like “rare” and “chronic” and “lifelong”….and“incurable.” The contrast looks like the flip side of a before/after list. From full-time to part-time. From team leader to occasional volunteer. From homemade dinner every night to more take-out than I will admit. (The guys at our “go to” take out place check on us when we don’t call.) I’m still at times stunned by the differences in our lives, and how strange it has been to have been on the side of “need” from the beginning of our time here. It’s bewildering to begin relationships on the receiving end of grace, when I was so previously accustomed to first offering it. And people who knew very little about us stepped into our story…and stayed.

poop

Before you ask, no, you may not have them. Our dogs are terrified of them and it’s hilarious.

I am convinced that I have the best tribe in the whole world. My people enter our “crisis du jour” and love us with food, flowers, books, knitted hats, and even playdoh. Oh, and poop emoji slippers. (It turns out that it’s still dangerous to put playdoh in the hands of 18 year olds all men.) This “chronic patient” thing is something I’m still adjusting to – reframing expectations, and moving the goal post a littler lower some days.

So when the holidays come and I run into friends from my “old” life, I have to really think before I answer the “How’ve ya been?” question. I sometimes avoid calls (sorry) and duck behind an aisle if I happen to be in Charlottesville. Do they really want to hear that soon after we moved I ended up with two liver diseases, a rare Immune Deficiency, and Lyme Disease? Can I just type out a one-sheeter and hand it to them? “Read this, and if you have questions, great. If you don’t wanna hear anymore, I get that, too. We can just cover the basics – it’s certainly easier for me.” It’s not that our former tribe would fail to understand and even offer  to help; in fact, I know the opposite to be true. I think it’s just too much to admit how many hard days we’ve had since moving, and way too long to go into. (I definitely need a one-sheeter.)

clark

We haven’t even started on the outside. Jim went a little “Griswold” on us this year.

As one woven deep into the fabric of several faith communities, I have lots of wise sayings sent my way. I am lifted with relevant Bible verses and whispered prayers; emboldened by texts reminding me to be brave and to seek joy; cracked up by my poop slippers. But as I continue the work of putting Christmas to bed, and reflect on the year that stretches in front of us, I can’t help but try to learn the lessons that are in front of me. I know I will be forever changed from having to make connections from a place of vulnerability, having received nothing but acceptance. I arrived here a steaming hot mess, and was welcomed in spite of my inability to serve on a PTA, or get to back to school nights, to run a swim team or manage a gift-wrap campaign.  I resolve to listen more, and to be kinder than necessary, for it really is true that everyone we meet is fighting some kind of battle.

Happy New Year, dear tribe. Let your hearts be light.

More About Jenny Here

 


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