Landing the Plane…

Yesterday I broke my own rules by talking politics on this blog that is supposed to be about our journey to health.  I was  lamenting the loss of political discourse with manners. (But really, the lack of civility is MAKING ME SICK so I think it’s relevant). I have been repeatedly bewildered by the fact that NO ONE seems comfortable enough to cross the political aisle to build a bridge to compromise. Why do we have to admit that every part of every idea from anyone on the “other side” is a bad idea? I would knit myself a purple cap if just one of our leaders would be brave enough to admit that “the other side” has SOME valid points.

KristaWe are missing the opportunity to show our children how live out our values AND play nicely with the other team. And if you are part of a faith community where faith informs your vote one way or another, aren’t we undermining the human value of those on the other side of our ballot when we paint an entire group as evil? I teach my Sunday School children lesson after lesson about Jesus seeking and drawing in the outsider. Whether they were marginalized by illness, religion, occupation, or social status, every encounter with Christ restored their health, well being, and status in the community. He helped them to discover personal value that transcended societal mores. And then I leave these lessons behind with the glue and the glitter, and fall back into my fragmented community. I can’t help but think that God must be grieved by this fragmentation. I have had several verses jump off of the pages of my bible enough lately that I’m beginning to see a theme. I keep reading, over and over, how God is grieved when “trouble is stirred up in the community.” Our leaders are terrified that giving “the other guy” any credit is their political death sentence…because it IS. (Do we have to throw out entire policies because we hate the authors?)

I’m going to do a really fun thing now and share some parts of the best sermon I ever heard. (You must be trembling with excitement.) I was with my mom in my congregation in 2011, and this sermon was so good, she and I used up all of the offertory envelopes in the pew row because we were taking notes. She leaned over to me and said “This is the best thing I’ve ever heard” which is why I can share it here…it’s Janice approved. This message left an indelible mark on my heart, changed my worldview, and challenged my theology to such a degree that I’ve asked John for permission to share it several times. And because he is awesome, I’m republishing parts of it below.

Our church was in a series on “The Fruit of the Spirit.” In this particular sermon, John (Herman) was mourning what I was moaning about above…the fact that in our “argument culture” every side is painted as the enemy, and he was encouraging our unique congregation – which was called “PEACE” Lutheran Church – to live into our name and live our faith in a different way. He was referring to a book I’ve quoted before called “The Argument Culture” by Deborah Tannen based on a claim that our society has become a “culture of critique.”

“The argument culture urges us to approach the world—and the people in it—in an adversarial frame of mind. It rests on the assumption that opposition is the best way to get anything done: The best way to discuss an idea is to set up a debate; the best way to cover news is to find spokespeople who express the most extreme, polarized views and present them as ‘both sides’; the best way to settle disputes is litigation that pits one party against the other; the best way to begin an essay is to attack someone; and the best way to show you’re really thinking is to criticize.” (Tanner, 3-4)

John unpacked this by pointing out that “There was probably a day when presidential debates were about issues and substantive dialogue; I just don’t remember back that far.” He challenged us to lay aside our differences and instead work towards one another…because one doesn’t have to negate the other. John said that “Into the midst of this divisive culture, the gospel of Jesus brings an alternate perspective. ‘Blessed are the peacemakers, for they will be called children of God,’ or from the apostle Paul, ‘If it is possible, so far as it depends on you, live peaceably with all.’”

breneHe reminded us that The root meaning of “peace” comes from the Hebrew concept of shalom. Shalom refers to a state of well-being, wholeness and harmony; a connectedness that infuses all of one’s relationships, with God, each other and the world. Both shalom and peace describe a way of living, A way of repairing the world.”

But what really convicted me was the way he landed this plane: He offered 3 concrete steps to further of God’s work of peace: (And for the record, I am still quoting verbatim.)

  • “First, practice ambivalence. You could define maturity (emotional, psychological, spiritual) as the ability to hold two truths in tension. The world is not black or white. It is characterized more by ambiguity and complexity. What does ambivalence look like? In political terms, we are not the good guys and they are not the bad guys. We can support our troops and question the wars. We can respect the president and hold him accountable. We can believe in our form of democracy but also open ourselves to the reality as to how our might and power are perceived by the rest of the world. (Robinson, “God Bless America: Be Careful What You Pray For,” 7/4/11) The argument culture tries to seduce us into thinking it’s a black and white world, with two opposing sides to every issue. It’s not. Practice ambivalence. And so further the peace of God.”
  • “Secondly, practice crossing the boundary. (As the Samaritan did, in Jesus’ parable, ministering to the Jew in the ditch.) Welcome strangers. Embrace those who are different. Refuse to demonize other human beings. Jesus teaches us to love even our enemies. What did he mean? To treat them with the respect and dignity every human being deserves. (Robinson) Practice seeking the common good. What is good about the ideas of the other person? What is good about the other person? How can I be a peacemaker in my own little circle? How can I be a peacemaker in our wider community?”
  • “A third way to further God’s work of peace: Practice serving others. There’s a lot of need to go around. Pick up a newspaper any day and you’ll be made more aware of it than you’d like to be. Children who are hungry right here in America. Large populations who do not have access to clean drinking water. Young people whose only experience of family is being a part of a gang. People of color who bear the everyday disgraces of racism. The mentally ill who are left to fend for themselves without medication or treatment. (Robinson) Children, youth and adults who cannot read. Pick a need. Any need. We can’t do them all. We can hardly make a dent in one life, let alone many. But pick one. And allow the light and love of God shine through you.”

“Practice ambivalence. Practice crossing the boundary. Practice serving others. What might the world be like if we practiced that kind of living and loving even in small ways? A better world…A more peaceful world, I think.”

artAs much as I want to instill in my children men a legacy of tolerance and reaching out to the marginalized, I know that I don’t want THESE PAST FEW MONTHS to be the lesson they learn from me. I’m not perfect. I will fail by 10 am most days. I will to continue to call my congressman, and advocate for the areas I’m passionate about and the people I want to protect. But I am also going to fight for us – collectively – to do this better.

God Bless You All Good.


Politics & Resilience…

Oh boy. Here I go. This one has been circling my brain for awhile. A couple of months ago I returned to my online community to reestablish the connections we had forged over the past few months. As we become reacquainted and welcomed  new readers to the tribe, I thought it was important for me to articulate why it was important for me to not only accept “Plan B” buHOLESt to actually embrace it.  One of the definitions of embrace – according to Professor Google – is “the act of taking up” or “supporting something willingly,” and that perfectly captured the approach I chose when I realized that these new afflictions were not temporary visitors.  I love to talk  write,  I have a unique perspective, and a platform from which to share our story…and no matter what the situation is, we all face some type of plan B, and we always have a choice as to how to respond.

Over the past two years, our family has encountered  “opportunities to practice resilience” in multiple arenas. I’ve referred to this persistent state of flux as our “eternal game of whack-a-mole” and, ohbytheway, last year I competed against my son in an actual game of whack-a-mole and he was amazed at my score, presuming my advancing age would correspond with delayed reaction time.  But I’ve been whacking moles for the two past years, and enjoyed “dropping the mic” on that one. From diagnoses, to injuries, to employment changes, home repairs, collapsing ceilings, moving, grieving, healing, launching a company, and beyond….we’ve come to expect the unexpected.

But never have I ever had to buck up, put on my big girls pants, and dig deep for resilience because of the outcome of an election. (And if you are one of my tribe who was happy about the outcome of the election, I am humbly asking you to bear with me for a few more paragraphs. You’ll see why, if I manage to land this plane. It may take two posts.)

lamottOur political identities are born of our unique circumstances. I have dear friends who have given generations of military service and usually vote for the party that (they believe) best represents their service and sacrifice. Others in my circle have been raised in faith traditions that dictate a stance on social justice and conscientious objection, and feel that “a different party” best reflects their worldview. I was blessed to grow up among both “camps” and I know that there are amazing people on both sides. 

My understanding of faith informs my vote in a way that leads me to typically put checks on the left side of the ballot.  (Yep, I  did it. I just went there. ) My own Godview prods me to vote to preserve creation, and to protect our natural resources.  My faith dictates a pro-life stance that I can’t find a box for – a desire to prevent unnecessary deaths due to gun violence, and to do away with the death penalty because (I believe) that we don’t have the right to end another’s life.  I want to welcome refugees, and I believe we have enough resources to spread our nation’s substantial wealth around. I want parents to equip kids to prevent pregnancy.  I want people to be able access to medical insurance and education. I want all babies to be born, but to also be fed and cared for even if their parents can’t afford it. (Cue bleeding heart liberal soundtrack)

So yes,  my lens of faith informs my vote, and I know the same is true for many of you….it just does it in a different way. But does that make ME “less” faithful? And in the reverse…do I see YOU as more or less faithful because you live out (and vote from) your theology in a different way? (Are my “red” friends still here?)

 

little giraffe

My friend Chris painted an April for me, with proceeds going to the American Liver Foundation.

NEVER before have I witnessed such rampant “defriending.” Perhaps that’s why the whole country gathered around their laptops last April, waiting for a giraffe to give birth. Finally, there was something we could all agree on…the world needs more live giraffe births. And guess what…we’re gonna get one!! (More on that  later) For now, the bear cam will have to do.

I think there are layers upon layers as to why we can no longer cross the aisle and forge a compromise, and I see the polarization dividing our church pews as well. I believe one of our biggest issues is that the art of discourse has disappeared. We’ve stopped “purpling” all together. And it’s making me sick.  

I don’t know about you….but when it comes to our political climate, I feel terrible ALL OF THE time. I am not succeeding at embracing this Plan B.  Trump supporters are mad at Democrats and call us whiners. Democrats are calling Trump supporters “baskets of deplorables.”  And it’s all just poison – and while it doesn’t directly affect my health, it probably indirectly does.

Life is so much better at Disney World.

purple.jpgWhat if we tried to find a new way forward.  Could we agree to try to agree? To find common ground. To pursue peace and perspective and to listen. During that horrible election season, I showed my sons a clip from the 1988 Bush/Dukakis debates. I knew that the art of political discussion replete with MANNERS had completely disappeared but we were stunned by the stark contrast of their discussions when held up against the most recent season of political ick that we were all subjected to. One thing is for certain...it’s not going to start with Washington.

Maybe we’ve strayed too  far from our 70’s hippy roots with each campfire beginning with “Let there be peace on earth.”

So perhaps it can begin here. Or in your home, or your neighborhoods.  I love purple. More tomorrow. If I have any friends left.

 


Lyme Lessons Learned

About a month ago I promised to share some of the knowledge we’ve accumulated about Lyme Disease as we pass the two year “crapiversary”  since our diagnoses. (I say “OUR” because 3 of the five of us have had Lyme. ) I always begin with the same preamble reminding my (amazing) readers that I am in NO WAY a Lyme Disease authority. Sadly, my French and Spanish degrees did not qualify me to dispense medical advice. (Mais, pourquoi?) I can’t lose sight of the inspiration that originally motivated me to begin writing. From a practical standpoint, I had endured years of limbo, unable to connect the dots that finally led to a diagnosis. Newly diagnosed Lyme warriors don’t leave the doctor’s office with a tri-fold pamphlet detailing their treatment regimen. No one sits down with you to explain what needs to happen, or how long it will take.

But I also wanted to share the hope that drives this little blog, which is to say that we have a choice to make, to sink or swim. To keep pushing for answers and glimpses of hope when the days get long and progress is hard to measure. And the reality is that we are getting well.  We are getting well DESPITE the fact that a lack of consistent information initially impeded our diagnoses and recovery.

If you are at the beginning, and are looking for information on our diagnostic process and early symptoms, our story starts here.  As so many Lyme warriors do, at about 18 months into treatment we hit a wall. We had settled in with a Lyme Literate physician and a course of treatment that seemed to be working…until it wasn’t. Left with lingering and troubling symptoms, we were at wits end, or whatever one step farther from wits end is, and anyone who knows us can vouch for that. We needed a new plan, but there was no road map. I carved out a large chunk of time, taking a week to do a very deep dive to see if there were new treatments, studies, or physicians that we had missed. I interviewed doctors by phone, read approximately 273 books on Lyme recovery and found some of the most redemptive stories from physicians who’ve struggled with Lyme themselves and discovered that the treatment guidelines were woefully inadequate. Many of those physicians recovered after DECADES of illness and emerged with a resolve to change the course of Lyme treatment and education, armed with the understanding that recovery has to be more holistic than they ever imagined. And I wish I had read those stories two years ago.

But the most helpful and amazing direction came from friends of friends and IMG-6390friends of family who have RECOVERED from Lyme. Recovered as in zero Lyme in their bloodstream after years of being ravaged by the disease. I went a little nutty, huddled in hotel bathrooms on family trips, talking on my cell phone to people willing to share what finally got them well, scribbling notes and asking questions. And I owe a debt of gratitude to everyone who participated in this endeavor.

We are back on track and the new plan is working. I’m going to throw some things out at you, in the stream of consciousness style that drives my husband insane, and I’ll come back with more details later. These are the things that I wish I had known from the beginning.

Allow me to step aside for a moment to reiterate that we are doing SO MUCH BETTER. Our original treatment regimen took us about 90% of the way there…but we were left with some hard to treat symptoms that made life difficult. I have full faith that we will also be among those 100% success stories, but what we didn’t know and what we didn’t DO did hurt us…and that’s why I’m offering my “lessons learned” along with some links. I encourage you to take a breath, do your own deep dive, and arm yourself with questions for your doctor. Our recovery is requiring a more holistic, comprehensive  process than we ever imagined, but it has also introduced life practices that we will never abandon. Once I wrapped my brain around this holistic lifestyle, we started to turn the ship around. You guys, we sit in salt caves and sip herbal tea on our front porch.

First of all: A positive diagnosis   is a blessing and a curse. For us, it was a relief because it explained a constellation of symptoms that confounded our doctors for several years.  There was finally a name for it…and we remain among the lucky few who were probably diagnosed within 2-4 years of contracting it. A positive diagnosis is an end to the constant preoccupation that something is really wrong with you. And it’s also the beginning of a marathon, as you begin to track down which co-infections you have and prioritize what needs to be dealt with first.

If I could do it over again,  I would take extended time off BEFORE TREATMENT to research treatment protocols, nutrition, genetics, inflammation, and detoxing. Learning about Lyme is like drinking water from a fire hose. We have found the most helpful resources from Lyme Literate doctors. Our doctor was on the board of ILADS, and she had a deep understanding of how genes, nutrition, and inflammation shape the course of illness and recovery.

I wish I had known that the same tick can bite two different people, and cause vastly different symptoms because of multiple factors at play. Dr. Bill Rawls, a Lyme survivor and author of Unlocking Lyme  calls these “immune disruptors” and they can change the course of your disease and your recovery. These factors include: poor diet (a diet full of processed foods), chronic emotional stress, toxin overload (exposure to mold and other environmental toxins), chronic inflammation, undiagnosed food sensitivities, job stress, job loss, leaky gut, energy stress (the overload of electrical devices, microwave towers, etc.), family stressors, or spousal illness. And some of us can say yes to all of the above. It’s not simply the ticks themselves that wreak all of the havoc on your body, but the inflammatory response caused by the above disruptors that can delay healing. I vastly underestimated the role of these immune disruptors, and we have had to peel back layer after layer to begin making progress again.

We were lucky that our doctor spent a very long time explaining the role of nutrition and supplements, offering a mini seminar on what the body needs in order to heal. She explained that you’ll know you are “getting it right” when your symptoms suddenly worsen. This means you are experiencing a “herx” – a die off of toxins, and you need to then go through a very specific detoxification process to eliminate the “bad guys” from your bloodstream and liver, otherwise you’ve invited the enemy out for battle and you just let them settle in. So yes, you get sicker before you get better. (I was skeptical of this until I experienced it, and witnessed family members experience it. But it does mean that it’s starting to work.) Often the detox protocol is tailored to specific symptoms and co-infections but the ones we’ve found most helpful are epsom salt baths, bentonite clay, infrared saunas, and various herbs to help with the die-off (herxing) symptoms.

I will write more on the role of detoxing  later – but one of the most important pieces of information to have on hand is whether or not you have the genetic make-up to actually heal and detox. Some of us are born with a genetic defect called the MTHFR gene mutation. THIS IS SO IMPORTANT TO KNOW ABOUT that I graced it with capital letters. MTHFR is the enzyme necessary for making glutathione, the enzyme NEEDED in order to get well and detox. If you have the MTHFR gene mutation, you don’t make enough glutathione and you will need to take supplements AND change your diet in order to produce it, so that you can actually detox when you start treatment. Otherwise you will take the medicine and be unable to rid your body of the die-off toxins. The MTHFR mutation  is discovered via blood test.

Guess what – we have the MTHFR gene mutation. We have another name for it that also uses the letters M,T, H, F, and R, but I’m not allowed to say or my mother will  d-i-e.

lyme

I wish I had fully grasped the importance of sleep. This is one of the biggest factors that propels Lyme warriors forward. And insomnia is one of the first symptoms to crop up. Solving sleep issues made life so much easier for us and it would have been SO good to understand that poor sleep significantly impedes recovery. (A cleaner bedtime routine, magnesium, less electronics, and better hydration have improved our sleep.)

I wish I had better understood  the need for a clean diet, free of pesticides, full of pure, filtered water, and very little cheating. As in very little/no alcohol or sugar, as both feed Lyme and worsen symptoms. (We are really fun dinner guests.) But we can have stevia! Stevia fights Lyme, so that’s great. And coconut ice cream. And herbal tea. But eliminating sugar, dairy, gluten, and (most) alcohol has made a huge difference.

I wish I had known about the dangers of electronic overload, mold toxicity, candida, and the benefits of yoga, meditation, and living smaller. An intentional decision to live smaller will help the adjustment to new nutritional limitations and requirements and the bucket of supplements that need to be worked into the daily schedule.

I wish I had known about herbal protocols. The “herbal route” seemed way too “off the grid” for us. But I’ve since learned that many Lyme fighters do multiple courses (as in months and/or years) of pulse-dosed antibiotic therapy and then switch to herbal protocols. Even the most well respected doctors in the field are turning to herbals to come in and “finish” the treatment and clean up the mess left by prolonged antibiotic use. And some use them to begin with. Herbals offer microbial benefits without the side effects of antibiotics. We did not “go herbal” lightly – we interviewed doctors, read books, spoke to now healthy people, and were finally convinced that this was the right path for us.

I know there’s more, but I think this brain dump will have to do for now. The bottom line is that life got better when our treatment got “bigger.” We had to accept the fact that swallowing a handful of antibioticus.jpgs and a cursory effort at healthy eating and detox was just not going to get us well. It required a new way of life that I predict will have us wearing daisy chains in our hair and chanting in the grass, following the path forged by brave warriors who embraced new avenues for treatment. And it also meant that we had to admit how sick we’ve been. For too long we tried to live with normal expectations for our careers, our relationships, and our social lives, fitting treatment into the busy lives we were trying to lead, constantly falling short somewhere. And I think that finally admitting how sick we’ve been has allowed me to let myself off the hook, move forward, and dance at our son’s wedding.

Lyme links that have helped us:

http://www.tiredoflyme.com/

https://rawlsmd.com/

https://www.ilads.org/

https://www.ilads.org/providers-and-members/lyme-disease-fundamentals/

https://www.ilads.org/patient-care/ilads-treatment-guidelines/

https://www.ilads.org/patient-care/provider-search/

https://iladef.org/education/chronic-lyme-dos-and-donts/

 


So, Really, How Are You?

I’ve been re-posting our lyme stories to bring new friends and readers up to speed with our family battle against tick borne illness and co-infections. Jim, Dylan, and I have spent the better part of two years recovering from what became a family fight against Lyme. People ask ALL OF THE TIME how it is that three of the five us of were diagnosed with Lyme, at times in disbelief, and at times scared that the same thing could be happening in their own homes. We’re still working through that very issue, but rest assured that we are NOT unique. We vacation together, we share the same pets, the same genetics, the same toxins, etc. More on that later.

As I wrote here, Dylan was diagnosed with Lyme last spring.  And as soon as he stopped swimming, his health immediately improved. The combination of long hours, stress, and wet sinuses meant that he battled constant mold and respiratory issues that plague many Lyme fighters with the mycoplasma co-infection. The torn groin – weakened by the tick that had made its home in the tendon – has healed and is no longer a problem.

morethanwhimsyI’ve learned so much from my 19 year old “teacher.” Dylan tackled his studies and new direction with a resilience that we are so proud of. It wasn’t easy, but he emerged relieved and proud. And when he landed an internship in Disney World, we had to say yes, even though it also entails a semester off of school. He deserves a little magic. Which is good – because he is working at Splash Mountain in the MAGIC Kingdom. Do say “Hi” if you run into him. He will be wearing a pretty silly uniform. His doctor has proclaimed him “practically healed” – with the Lyme seeming to be in remission. We have high hopes that the Florida climate will be just what he needs. Fingers crossed, prayers said, and we are so, so happy for him. He is rocking “Plan B.”

And I am feeling better than I’ve felt in ages. The CVID  (my immunodeficiency) is under control thanks to the Affordable Care Act that allows me to have the very expensive immunoglobulin infusions that enable me to get out of bed and work and cook and talk. I missed two months of treatment in January and February while an insurance hurdle was…hurdled…..and was subsequently “flattened” for several months, jelly legs and all. But I seem to have caught up, and am stronger than ever. My last round of liver function tests showed labs in the NORMAL RANGE. Can you imagine? I have two liver diseases and normal labs, The lyme-related infections that invaded my bladder, kidneys, and liver seem to have arrived at a plateau for which I am very grateful. No good day is unappreciated. If anything, I have to fight against enjoying my good days TOO much, as I am thrilled to finally have energy and reduced pain. (“I’m going to clean the house, plant flowers, weed the hill, cook a week’s worth of meals and go for a walk. Or maybe I should take it a bit slower.” )

And I should probably let Jim write his own update – and maybe he will – but for now I am happy to say (with permission) that he has also reached a level of wellness for which we are very grateful. He has achieved almost total relief from the joint pain, GERD, and brain fog that were ever present during the months before his lyme diagnosis. We credit his improvement to a huge commitment to his own health, which includes running, many rounds of pulse-dosed antibiotic regimens, and a dedicated effort to detox. We’re now looking at alternative treatments to come in and clean up the debris that the lyme toxins leave.

We’ve learned volumes about nutrition (as in lectin free diets), the link between brain and gut health, the importance of detoxing, meditation, healing “crises” and a radical commitment to self-care. I’ll share more in the coming weeks about the alternative treatments we have found helpful.

dylanWe DO look better on the outside, but there are still scars emerging that need time in the light to heal. We are battle-worn. What is rarely spoken out loud is the way Lyme ravages the entire family. Those not actually infected are left holding the shreds of morale and sanity while the rest of us try to get better. (We do try to take turns being crazy.) And because it takes so long to heal from Lyme, caregivers become weary and quite frankly, it just gets really old. There are many setbacks, bad days, and disappointments, and it’s ridiculously expensive. But the lessons we’ve learned will carry us over the finish line.

We’ve learned to set boundaries, to ask for help, to be vulnerable when lyme and stress steal our peace, and to be ever grateful for those who love us through a confusing journey. Tick-borne infections are insidious invaders that wreak havoc in different ways with every individual. There is not yet a “gold standard” of treatment because the CDC lags YEARS beyond what Lyme literate doctors know. Recovery can

hopebe unpredictable and varied depending on how early you catch the illness, and the state of health you were in when the ticks decided to invade.

I wouldn’t wish the past two years on anyone, but I also wouldn’t trade the lessons learned along the way.  I’ve learned to listen to wise counsel when those I trust nudge me to dig deeper or to let certain things go. We’re resurfacing with different priorities, new definitions of success, and an appreciation for our ability to love one another through some very un-lovely times.

Next week we have a wedding. Our son is marrying his lobster, and we are gaining a daughter. And we are ALL well enough to dance. (We just don’t all dance WELL.)

So much love.  God bless you all good.JJ

Next up: What in the world is a lectin free diet, and why does it matter?

More about Jenny.

 


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.

 


Watching our Words Fly Across Oceans

lucky-like-a-four-leaf-clover-quote-1.jpgI have a couple of friends who at some point discovered they could find four leaf clovers all the time… practically every day. And one stroke of luck was all it took to keep their eyes to the ground, gathering more “luck” with each passing day. One friend even joked that she had to train herself to look UP because she was running into trees.

I NEVER think to look for four leaf clovers.

I have another friend who finds single playing cards, which is the strangest thing – but I’ve been with him when it happened, and he’s got an ever-growing collection. So. Weird.

Even my spouse experiences a phenomenon that sometimes freaks me out: he runs into someone he knows everywhere he goes. And I’m not talking about bumping into the neighbors at tar-jay.  I am saying that the guy RUNS INTO SOMEONE HE KNOWS EVERYWHERE HE GOES. He told me about this phenomenon when we were first dating, and I’ve personally witnessed it dozens of times now, but never as acutely as the time we were backpacking through France. Exhausted from a day of hiking in the Alps (I sound so exotic, n’est-ce pas?) we ducked into a very inauspicious bar for a drink…and there stood THE GIRL who had tried mightily to get his attention while we were dating. And there I was, on his arm, even after graduation, across the ocean. (Bam! And creepy!)

I am not claiming that God is playing 52 card pick up with one friend, while scattering extra four leaf clovers in the yards of others, and I don’t really think God planned the random encounter with the stalky girl in France.

But I do believe that when we begin to keep our eyes open for specific “signs,”  be it plant, playing card, or person, our eyes open wider and we start to take note when these occurrences become re-occurrences.

That is what is happening with this little blog. I am not blessed with the synesthesia that enables certain people to be more prone to finding four leaf clovers, and I’m WAY too clumsy to manage walking while scanning the ground for pennies or playing cards…but somehow this little act of typing out our story is connecting people to answers that have eluded them for months, or even years.

I am taking note of the opportunities that arise to share what we’ve learned – and this IS the part that I name “holy” – because while we have endured a really crappy streak of bad health partnered with bad timing, I know was born to talk and to teach…and maybe this is how the “hard” we’ve experienced will be redeemed. My collection of conditions is rare enough that I have to do a lot of my own legwork…but not so rare that there are not desperate people googling for stories and information that gives them the power and relief of connecting really scattered dots.

Our story is flying across oceans and I know that it’s not me. I post so irregularly because I AM struggling, and that’s the dance of talking about your journey while still on the road. My CVID is misbehaving because our insurance dropped my providers and I have not had infusions since January 1st. (More on that later.) The stupid “jelly legs have returned, and every time I’m in a crowd I’m down for days. Praying that tomorrow’s appointment brings answers and restored energy from infusions made possible by generous angels who donate their plasma.

I can’t believe how daunting those first months of treatment were, now several years into it…because now I know how crucial they are to my doing things like walking and cooking and washing my hair and not having to be horizontal after being in a crowd. 

And…as a recovering perfectionist, I keep waiting to feel all better to write and update and post. It’s still a hurdle for me to realize that life is good when I’m not, that I don’t have to be 100% (who am I kidding) 64% better to do the writing that is helping others realize that there are answers to questions that have, for years, felt like riddles. So I will keep trying to show up…and trust that these words land where they need to.

“When I let go of having it perfect, I learned the joy of sharing

 life with the imperfect.” – Kara Tippets, The Hardest Peace.

It’s Ash Wednesday…and Valentine’s Day…and my little brother’s birthday. 

So much love. 

my guys

Still Gloating.

 

 


New Clothes…New Heroes…New Year.

This is kind of the “season finale” in my series about the year we just limped out of, where Jim and I have been sharing our zone defense approach to Lyme Disease. Or rather, Babesia, Bartonella, and Mycoplasma. I should probably show you a picture of what Lyme can look like a year into treatment. Jim took seriously the need to detox during treatment. When you agree to swallow the handful of pills that this war requires, you have to also promise to detox your body from the Lyme spirochetes that the antibiotics “chop” off to swim like poison in your bloodstream…until you take measures to eradicate them. Because if you don’t,  you become even more ill. Fighting Lyme is a huge commitment.

wineJim took up running, cleaned up his diet, starting fighting those bugs, and is now 60 pounds down and HE NEEDS SOME NEW CLOTHES!  (I hesitate to tell him he looks good because I love him big and small, but he really does look good. Please don’t tell him. )

One year post diagnosis, the reflux is gone, the gout is gone, the hypoglycemia is only intermittent, the brain fog has mostly lifted, but his neck still creaks, and sometimes the effects of Lyme treatment make days less than fun to navigate.

But here’s my truth: he is THE PICTURE OF COURAGE, and he is a bad-ass Lyme fighter.

Having Lyme is difficult. DIAGNOSING Lyme can take an average of three years. But TALKING ABOUT LYME….can be even harder, because you risk being labeled a hypochondriac/tree-hugging/attention-seeking histrionic.

Raise your hand if you are a Lyme-fighter who has been told by a doctor that “they don’t really believe in chronic Lyme” or  “those diagnoses are really suspicious.” 

Raise your hand if you are a Lyme-fighter who has been told that “you don’t look sick”  – which is meant to be nice but sometimes feels more like you are lying about being sick.

Raise your hand if you’ve been told that you “just need to clean up your diet” or “you’d be healthier if you were more positive” or “I don’t get sick because I don’t take any pills.” Well…that is fantastic! So happy you don’t have to take pills. (Really!!)

Ticks are tiny, but Lyme is invisible. Until you walk into a Lyme-fighter’s bathroom, you don’t realize that they tell time by the color of their pill case.IMG_4625

Jim had begun his own fight against the Lyme that had taken up residence in his brain, joints, and digestive system. I was jumping through hoops trying to beat back the bugs that lined my bladder and kidneys, and threatened my liver.

sleep

Really. He slept for 36 hours..in the middle of our little cabin in Maine.

And I’m going to hold my breath through this one because it still hurts to linger on, but with permission, I am sharing what I alluded to before: we had no idea that Lyme would continue its assault on our family. Our amazing, funny,  smart favorite third son accepted a scholarship to swim for the University of Virginia in June before his senior year of high school. We were thrilled to see his hard work pay off and his dream become a reality. We cheered when he got his Olympic Trials cut and we laughed when he slept for 36 hours straight afterwards. It was a bright spot in a dark time.

And then he started getting sick. Every three weeks. Every time he ramped up training, added a practice or a dry land session. And it started and ended the same way every time, with body aches, a fever, sore throat, cough/bronchitis, and an ear infection.

His entire senior year was plagued by a cascade of different issues –  different,  but kind of the same. We watched him pick himself up and restart his training so many times we lost count. He fought respiratory infections, migraines, groin and tendon injuries, and even a dangerous infection following a routine vaccine. He endured months of frustration when he wanted to be training and enjoying life before the real work of college and Division 1 swimming began. We LITERALLY saw dozens of specialists and appointments. And yet again, highly pedigreed experts kept assuring us that these were  isolated and easily fixed issues.

The domino effect came to a crash landing with Dylan’s diagnosis of Lyme disease in May.  I still haven’t found a way to describe how it felt to have my own illnesses, a spouse in treatment for Lyme… and a really sick kid. Except to again say that I’m so glad we went first.  When offered a longer, but more tolerable course of treatment, my new hero said “No way, I want to swim, hit me hard.” Watching him tolerate the side effects of treatment while his friends were at beach week completely undid me. I unraveled so quickly and so completely that I’m still not totally…raveled. Not in front of him, but as soon as his back was turned,  and at times to the point that my favorite second son had to literally pick me up off of the floor.

And I still cannot fathom the fact that WE DID NOT SUSPECT LYME in him until months into the crisis. We kept thinking we were at the finish line.

It did not occur to us that it could be Lyme…BECAUSE IT LOOKED SO DIFFERENT. Imagine…both parents in treatment for the same disease, yet WE were still shocked by the answer. This is a problem.

We did only what we could manage: we drew in, closed the circle, unable to engage in life beyond work and Lyme-fighting. I became completely  out of touch with my own issues – my mind disconnected from my body, swallowing the pills but not at all focused on my own healing. Aware that the only thing that propelled me was adrenaline and the churning of my stomach, trying to get a sick kid ready to go to school, study engineering, and compete at the highest collegiate level. I could respond to the urgency of the moment, but I crumbled and wept when not “on duty.”

dylan

This is what got us through…we held on and tried to smile.

Our definition of success is not what it used to be. Despite a strong start, our new hero decided that he has a different dream. He wants to be happy and healthy, and experience all that life in a rigorous program at a top-tier school has to offer. Swimming while fighting lyme and taking a grueling course load was too much. And life is too short.  Bravery looks different to each individual….but to us, it looks like an 19-year-old deciding that he has a different dream, and watching him step forward to own it when it might not be the popular decision. 

I realize that by going into detail about my Iron Man and my 19 year old hero, I’ve neglected the other heroes in our story, the ones who have propped us up. The 23 year old who held his insane parents together when we moved out of our home 48 hours after dropping our last kid at college. The 26 year old hero and his fiancée who shower us with hilarious stories and thoughtful gifts and look for ways to make us laugh. Friends and family who moved into our mess and noted, but kindly ignored, how insane and distracted I was. Loves who sent cookies and ham and magic mac and cheese, and painted giraffes, and painted rooms, and packed boxes, and let us fill their yard with dumpsters full of trash. Friends and family who understand that while we are at our core the same loud people who love and laugh and talk over one another, we are also wounded and guarded and sometimes we have very bad days.

We have a long way to go, but we have come so far.

And we’re not going to keep quiet about it because our story is being repeated in homes all over the country, and especially all over our state. Our kind doctor has shared that she has entire NEIGHBORHOODS in Northern Virginia who are sick with Lyme. Not just entire families – but NEIGHBORHOODS. And we’re not hearing from them because THEY ARE UNABLE TO EXPLAIN IT.  I’m meeting new doctors in our new town, and I’ve already had two of them whisper that Lyme scares them to death…because of what they don’t know. And when they share the treatment protocols they are required to offer, it makes me scared for Lyme patients who think that their two-week course of doxycycline will knock out terrifying neurological Lyme symptoms. And if there is one person in a family with Lyme, chances are pretty good that at least one of your other family members has it as well…since you tend to hang out in the same places.  And trust me, it can and does look different in each person. Lyme is a family epidemic.

23755137_10214539546424021_6756643078523320436_n

Sometimes we pile on all of our warm clothes to catch a sunset.

 

The hard edges of our lives don’t make life all bad. I know some of this will be redeemed.  Anne Lamott writes that

 “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up”. 

It’s a choice to keep laughing, to keep getting up, to seek daily joy, and to keep looking for answers. Our “wins” look different now, with a sunset picnic on skyline drive, or an evening of Netflix after working all day. WORKING. We can WORK! THAT is amazing.

So much love. Happy New Year. God bless you all good.