LymeSplaining Part 3: How Ticks Transmit Disease

2lyme1Back to Your Very Special Lyme Lesson. This is the third installment in my series on Lyme disease. May is Lyme Awareness Month, which seems the perfect time to go in to detail about how Lyme is transmitted and diagnosed, and how something the size of a poppy seed almost ruined my life. If you missed episode one or two, you may want to back up so that you are up to speed on the soap opera that is my Lyme disease saga.

One of the Biggest Problems with Tick-Borne Disease is that ticks don’t just bite you and cause a single reaction, like a bee sting. (And I know if you are allergic to bees those reactions are very traumatic.) But once you’ve recovered from that bee sting, you are essentially “cured,” whereas the initial “nibble” from a tick is the beginning of a nightmare. Ticks don’t just cause a single, isolated reaction. If  you were bitten by a tick and developed the now-famous bulls-eye rash, you are actually very fortunate, because you will receive immediate treatment, long-term monitoring, and a much better prognosis – which can include total healing.

However.

 

tick-borne-rashes

I NEVER had a rash

Only 20 % of Lyme warriors present with the rash The rest of us – the other 80 % – have no idea that we were bitten by the equivalent of a poppy seed, and because we never had the rash, we assumed the early stages of Lyme were a bout of flu, a little arthritis, or some extra soreness from our hot yoga class. Researchers are learning more about Lyme all the time, including the fact that those who tested positive, and received immediate treatment, and even experienced relief from the rash, flu, or joint pain may actually still be dealing with Lyme disease unless they underwent serologic testing to identify any Lyme co-infections. It’s not like a strep test or a nasal swab for flu…your practitioners need to understand that the Lyme bacteria could have taken up residence in different areas of your body, and they need to proceed with testing to find out if you were left with undetected infections.

 

2lyme3If you were bitten in the past, and received a brief (2-4 week) course of antibiotiocs, but did not undergo follow up bloodwork, it is possible that those “undercover agents” remained undetected while triggering chronic disease. (I am really not trying to catastrophize this, and I know I sound like a real downer today. But I’m also not going to sugar coat the truth.)

Remember…Lyme isn’t just one disease: And once you are bitten – JUST ONCE, you. are. at. risk. for chronic disease. I suggested last week that we call it Lyme diseasESbecause ticks carry hundreds of pathogens, any of which can wreak havoc if left undetected.

 

Progdinner

It’s like a progressive dinner, without food, fellowship, or friends.

So how do ticks manage to contract so many diseases? They really are productive, reslient creatures. Ticks go through several life cycles: egg, six-legged larva, eight-legged nymph, and adult. After hatching from their eggs, ticks must feed from a live organism at every stage to survive and grow. And most ticks enjoy a varied diet, preferring to have a different “host “animal at each stage, kind of like a progressive dinner.  They feed on mammals, birds, reptiles, and amphibians, all of which carry different diseases. Which means that after every feeding, ticks have ingested multiple pathogens.

 

Oh, and stop reading if you are already freaking out. A Chinese lab recently published a study where researchers collected local ticks and allowed them to feast on laboratory rats that had been bred in captivity (they were free of disease prior to the study.) After the tick “feast” they examined both ticks and rats for the bacteria suspected to cause chronic lyme disease. The ticks entered the lab with 373 types of bacteria, and they transmitted 237 DIFFERENT diseases to the rats.

Lyme CycleIs anyone else wondering why ticks are able to survive with 373 diseases? Why don’t TICKS die of Lyme disease?? How do microscopic dots have 373 diseases and manage to go to work? I found an explanation for their adaptive resilience HERE

I’ve gone so far off the deep end that using freshly ground pepper throws me into a PTSD (post tick stress disorder) panic attack that can only be cured by buttercream frosting.

 

corkscrew

It’s a corkscrew, but without the wine.

Once you’ve been bitten….what happens next? The bacteria that ticks produce is a very long spiral-shaped (think corkscrew) bacteria called a spirochete that is able to move about by twisting and turning in a corkscrew motion. Ticks find the human bodies to be the perfect environment to multiply because they are asexual and anaerobic (meaning they don’t need match.com or even oxygen in order reproduce). So there they are, multiplying and spreading, setting up camp in different areas of the body, while remaining undercover. Much less detectable than Sean Spicer hiding behind White House bushes. Different spirochetes do different things, too, depending on which area of the body they “land,” and what type of bacteria they are.

 

 

cloak

My own Lyme biofilms disguised at least 7 layers of bacteria that were undetected in my doctor’s office for two years. PCR testing revealed the hidden pathogens

Remember that cloak of invisibility we talked about last week? Biofilms enable lyme bacteria to remain undetected for years…

 

After awhile the spirochetes evolve, and become to metabolically dormant cysts The cyst form allows the bacterium to survive your body’s inhospitable conditions and even elude your immune defense mechanisms. One of the co-infections I have, the mycoplasma pneumoaie, damaged my bladder wall by creating tears in the lining, which allowed bacteria to “slip through the cracks,” and remain undetectable while forming layers of biofilm. The biofilm allowed layer upon layer of bacteria to build up, while undetectable in most laboratory conditions until I found Ruth Kriz, PNP, and underwent testing at the molecular level.

Here is an more scientific description of what happens when a tick bites you.

For those of you who like bullet points, here is a basic description of how ticks transmit disease, per the CDC,  through the process of feeding. (If you are squeamish you might want to look away for a minute.)

  • Depending on the tick species and its stage of life, preparing to feed can take from 10 minutes to 2 hours. When the tick finds a feeding spot, it grasps the skin and cuts into the surface.
  • The tick then inserts its feeding tube. Many species also secrete a cement-like substance that keeps them firmly attached during the meal. (Did you get that? They cement themselves to you!) The feeding tube can have barbs which help keep the tick in place.
  • Ticks also can secrete small amounts of saliva with anesthetic properties so that the animal or person can’t feel that the tick has attached itself. If the tick is in a sheltered spot, it can go unnoticed. (Basically, they carry novocaine with them and numb you to avoid being caught.)
  • A tick will suck the blood slowly for several days. If the host animal has a bloodborne infection, the tick will ingest the pathogens along with the blood.
  • Small amounts of saliva from the tick may also enter the skin of the host animal during the feeding process. If the tick contains a pathogen, the organism may be transmitted to the host animal in this way.
  • After feeding, most ticks will drop off and prepare for the next life stage. At its next feeding, it can then transmit an acquired disease to the new host.

 So, as a Lyme patient warrior, I was bitten, cut, numbed, cemented, drained, and spit upon. And I never noticed. I’d better stop here. I think I’ve given you enough to digest. Maybe digest is the wrong word. 

 

2lyme5My years in parish ministry have taught me that everyone processes diagnoses in their own way. Some get through by pouring themselves into work, or other projects, letting their doctors be the experts, while focusing their mental energy elsewhere. Others need to gather information in order to persist, preferring to be annoying active advocates, and questioning everything. (I’m sure you are wondering what camp I fall into.)  And still others put their heads in the sand, refusing to think about or face their issues at all, binging on Netflix and Candy Crush. (And some are pretty judgy of those who cope in different ways, asserting or assuming that their own coping method is the best.)

 

And it is…for them. I would urge a little grace for those who process differently, unless you’ve tried on their shoes.

 

thinkzebra

CVID patients are often the perfect hostesses for Lyme

Because I am a zebra, and have been the “first of [his] patients to get this disease in 30 years of practice” and also “the first of [her]patients to get this [other] disease in 40 years,” I have had to choose the more “annoying” route, but I’m working really hard to put my faith in action and trust that not only will I thrive, but that we will be able to eek some goodness out of this unpredictable roller coaster, making “lymeade” even though I can’t drink margaritas.

 

 

 

 


Lymesplaining: Part Two

A second re-post as we enter what the CDC is predicting to be the worst tick season in history. Doctors are whispering to me that they are terrified for what is coming.

This is the second episode in my miniseries on Lyme disease, lending my story to the  efforts of Lyme Awareness month. Advocates, patients, family members and Lyme Literate Doctors are uniting across the country to plan walkathons, sponsor 5K’s, and put up billboards with GIANT SCARY TICKS. Some towns are hosting bar-a-thons and even (hair) cut-athons  to broaden awareness of what is now being labeled an epidemic. Because THE INCIDENCE OF LYME HAS SURGED BY 320% IN RECENT YEARS. This is my attempt to explain Lyme Disease for the average (medically untrained) person, or in the very least, break it down so that my own Lyme addled brain can process how a tiny nymph of a bug

nymph on finger

This is not my arm – but see that tiny dot? I hate that tiny dot.

caused a cascade of issues that finally resulted in my Lyme diagnosis. If you missed last week’s post and want the context of my “backstory,” or if you just really like to read about blood sucking villains, please start with the “first episode” in this miniseries

 

Prior to this year, the most I knew about Lyme was that it is caused by ticks, and is a very bad thing. If you have been thus far unaffected by Lyme disease

facepainting

This is me – unaware that I was developing three different diseases. So carefree with my fairy face-painting. Can I go back to that fairy tale?

then you would have no need to understand how stealthy, dangerous, and illusive ticks can be. A common misperception about Lyme has been that that is ONE disease caused only by the bite of a DEER tick.  As the proud mama to black and yellow labs, I was well versed in the need for monthly applications of frontline, and was even adept at removing the rogue ticks who got through the frontline firewall. But, again –  those were dog ticks, and before I was diagnosed with Lyme, we discounted them because our doctors (at the time) assured us that they carried no risk for Lyme, and even laughed at me for bringing  the tick to the office, carefully transported in a ziplock baggie like I was carrying radioactive material. (Um, it turns out I WAS.)  We also operated under the misperception that we only needed treatment if we developed the infamous BULLSEYE RASH that we knew to be an  indicator of a tick bite, and possible Lyme infection.

bulls eye

The Famous “Bullseye Rash” is not so famous. Only 20% of Lyme patients develop the rash and know to seek treatment.

But I certainly wasn’t alone in my ignorance. The lack of awareness extended to the medical community – constrained by CDC protocol which used the bulls-eye rash as the the criteria for treatment. And I use that word loosely, because the only approved regimen was a 2-4 week course of antibiotics, with little to no follow-up bloodwork to look for infections that alluded the treatment, hiding under their “invisibility cloaks” (otherwise known as biofilms.)

NymphpicFortunately, the body of knowledge about the prevention, testing, and treatmant of Lyme disease seems to be expanding almost daily, thanks to the advocacy efforts of the nationwide awareness campaigns.  Many mainstream physicians seem to be acknowledging that they, too, are learning more and more about lyme, which includes educating patients about the various ways  Lyme can be spread and acquired.  My local family practice is now educating patients to understand that while Lyme is most often transmitted by nymphs  (baby ticks), it can also be transmitted through contaminated blood transfusions, during pregnancy,  via intercourse (“Oh, GOD Mom, please don’t talk about sex”) and from exposure to feces from animals or people infected with Borrelia. They know that people can acquire Lyme from deer tick, dog ticks,  and sometimes from spiders, and mosquitos. This progress gives me hope for the future of all Lyme patients.

2lyme2But for right now…in good conscience I need to share that I had an off the record conversation with someone from the CDC who warned me that I would not get well if I stayed within the confines of the traditional medical establishment, because they have so to go to be on par with Lyme Literate doctors (LLMD’s)).

Oh – and here’s the best part: I have yet to find a LLMD who takes insurance,  which means that we pay out of pocket for ALL of my treatment. Most insurance companies allow a maximum of  about 15 minutes per patient. Lyme practitioners spend hours pouring over medical histories, and perform lengthy physical exams in order to even determine which tests to order before they can devise a carefully tailored course of treatment for each patient’s unique set of symptoms. Because ticks can transmit over 300 diseases, to say that each case is unique is a HUGE understatement.

believeSo – if we want to have doctors who specialize in Lyme (and of COURSE we do) we need to either 1) bite the financial bullet AND 2) join the advocacy effort to raise funds for research and to lobby the insurance industry to allow for individualized treatment, and bring the medical establishment up to speed. Follow this link to hop on the advocacy bus. Go on, I’ll wait while you do it.

I see glimmers of hope that this will eventually change. Our own family practice has done a 360 degree shift in the past twelve months regarding the protocol they follow to treat patients with suspected Lyme. They no longer use the bullseye rash as the justification to begin treatment, and they don’t care if it was a dog tick vs. a deer tick. Recently a friend went in WITH a rash, and was told that the only criteria they now use to treat for Lyme is knowing you were bitten by a tick. They are beginning to understand that early treatment prevents chronic disease. We can only hope that the Insurance Industry will follow suit, but I certainly don’t plan to die while waiting.

I will pick this up tomorrow, going a little deeper into the diagnostic process.

So much love,

Jenny

If you are here because you suspect that you or a family member may have lyme, here are some links that may be helpful:

International Lyme Disease Awareness Society: 

http://www.ilads.org

Support for Lymies in the DC Area

http://natcaplyme.org


Welcome, May….and Lyme Disease Awareness! (Lymesplaining Part 1)

Hi readers and friends,

I am reposting our Lyme stories with Lyme Awareness month halfway gone. We are still fighting lyme, with good days and bad days, with grit and determination. But the CDC is warning that this year could be a pandemic year for lyme, and it’s being labeled a health “crisis.” Because it is. So without further ado…Our Intro to lyme. (And new content coming this week)

ZebrastrongIt has become obvious that this little site is becoming a connecting point for others who are either battling Lyme themselves, or suspect that either they or a family member may have Lyme disease. And humor me while I add a necessary disclaimer – I am by no means an expert, mostly because of my zero medical degrees. This is simply my story, and because it’s a rare and twisty account, I have found that baring my soul to the masses bears the fruit of making connections with others who are going through similar things, and we are always better when we learn from one another. So if doing a search for “Lyme” or “Interstitial Cystitis” brought you here, welcome, and I’m sorry you had to google it in the first place. But it works well for me, because last month I rejoined my blogging community to help raise awareness for CVID, the immunodeficiency that kind of kicked off this domino effect of illness and autoimmune issues. (April was CVID awareness month, which flows perfectly into May – which happens to be Lyme disease awareness month.)lyme awareness

Because it has been awhile, a brief (HA!) refresher: My backstory is important, because we are learning that any one of the issues I have can cause a cascade of other issues. This all started because I have a rare immune deficiency that is called, oddly enough, Common Variable Immune Deficiency . Last January I was also diagnosed with Primary Biliary Cirrhosis/Cholangitis (PBC) an even more rare autoimmune liver disease, and then, as luck would have it, last May I found out that I also have Nodular Regenerative Hyperplasia, a second liver disease…..which, turns out, was caused by….

lyme-slices-for-successful-treatment-recipe-e1466303620638-660x330

And not the LIMES we put in margaritas.

frigging LYME.

The CVID was triggered by an e-coli infection that I contracted 6 years ago. It’s kind of a “chicken or the egg” type of thing because we don’t know if the CVID caused me to be at risk for the PBC, or if the E-coli caused my liver to declare war on itself. And it really makes no difference, except that other warriors who have any one of these conditions need to understand their risk factors for co-morbid (a really morbid way of saying co-existing”) conditions.

don'twannahearLiver Disease number 2” – the Nodular Regenerative – Hyperplasia(NRH) is caused by chronic infections, and the chronic need for medication. The infections and the medications lead to bile duct injury, which causes Portal Hypertension very bad things. People with CVID tend to have lots (and lots and lots) of infections. In my case, I was having constant UTI’s requiring constant antibiotic treatment and pain management support. And no one could figure out why I got a UTI every time I stopped taking antibiotics. (There she goes talking about tinkle again.) We were warned by my team at NIH that unless we found the root cause of these chronic infections, and STOPPED THEM, the NRH would progress. (BTW – “Liver Disease Number 1” (the PBC) is actually behaving right now, responding to the Ursodiol and milk thistle that I take every day, and my liver numbers are finally in the normal range. Go, PBC Awareteam!)

I began an exhaustive search for an expert on chronic UTI’s and Interstitial Cystitis, and as luck (or providence) would have it, I came across a practitioner in DC who originally opened her practice to treat women for Interstitial Cystitis, which is the term for bladder pain caused by unknown pathogens. And after years of practice, she began to realize that the common denominator, the root cause of Interstitial Cystitis, is Lyme Disease. 98 %of her patients have Lyme Disease. At first I had a very hard time believing that I could have Lyme Disease in addition to everything else. But think about it- I have virtually no immune system. I was the perfect hostess for this intruder.hobby

Before this, I knew that Lyme was a very, very bad thing, and that was the extent of my knowledge. So here begins my attempt to break down this complicated illness and explain it in a way that at least I can understand…because so many of us think, “Tick bite, rash, antibiotics, good to go.”

This is getting really long. Shall I break this into two parts? But before I get into my Lyme lesson…let me just add my 2 cents.

cloak

Lyme Biofilms are not as cool as Harry’s Invisibility Cloak….but they are more difficult to penetrate.

We need to lobby for a name change. It should really be called Lyme DiseasES. I don’t have Lyme Disease. I have Lyme DISEASES. Ticks aren’t hit men who bite you once and move on. They prefer slow torture, and specialize in working undercover for years – and I mean, literally UNDERCOVER because they form protective shields called biofilms – like Harry Potter’s invisibility cloak, allowing them to remain undercover and very dangerous, and move about wreaking havoc under their cloak of invisibility biofilms.

But I digress. Let’s stop for today…it’s important to know the backstory of my Lyme disease, because one diagnosis led to another, which is an important reminder to stay vigilant without becoming obsessive. (Good luck with that.)

Tune in tomorrow for an exciting chapter on “What ticks feed on during their larval stages to contract so many diseases.” It will either inform you, or help you reach your weight watcher point goals.

14051735_10210153069284834_8145779128675517410_nSo Much Love,

Jenny

More About Jenny Here

 

 


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

 


Oh,no…she’s writing about bile.

joySeasons greetings, dear tribe. It’s been a while since I’ve checked in, and I wish I could say that it’s because life has been crammed full of holiday festivities and general merry-making, but I’d be lying and …it’s Christmas.. When I last posted, our household was in the throes of recovering from VOLDEMORT. (VOLDEMORT is the name of our master bathroom toilet that decided to break in the middle of the night and flood the bottom two levels of our home, and continues to wage battle against us during our weakest points, like stomach flu and when we have company.) VOLDEMORT stole the last remnant of my pluck, and plunged me into a dark place I hadn’t visited in a really long time. And I did “all the things” that have previously worked to pull me out of the fog that is depression, which includes medication, meditation, and lowered expectations. Oh, and cake. And it’s working – the cloud is lifting, and my shape-shifting superpowers are returning. (Which is a good thing… because apparently VOLDEMORT has friends who are out to get us, but this time he won’t win because my my spunk is back,  and I’m once again able to pivot when necessary, devise Plan B and forge ahead.) Unfortunately, even the best antidepressants can’t alter the reality of health challenges, career changes, and flooded houses, but it can certainly make them more tolerable. This year has provided us with loads of blog material, but because we’ve been in “Reactive Life Syndrome” for months, doing what we can to keep up and tread water, it’s been difficult to find the time to get the words on paper. Or on the screen. You know what I mean….

I’ve written before that having multiple diagnoses is awesome, because it keeps life exciting, and has me wondering about what’s lurking around the corner. I had

cmas

This is my favorite tree ever. (Said for the 26th year in a row)

recovered from a serious infection before Thanksgiving, and was fortunate to be able to celebrate with my loves. We had the quietest (and smallest) Thanksgiving we’ve ever experienced, and we crossed off all of the Thanksgiving week rituals with turkey and “all the trimmings,”a Gilmore Girls marathon complete with coffee, pajamas, and pop tarts. We found and decorated the perfect Christmas tree, and we celebrated my oldest son’s 25th orbit around the son. The size of our gathering was small, but it was one of our most tender holidays to date because the intimacy of the group enabled us to process the past year and name the silver linings that were a bit harder to find this year.

treeBut back to being boring. Or…not. Apparently it was “all the trimmings” that did me in. I became really sick at the very end of our party for Sean on Sunday evening, and I left the festivities to sneak up to bed. Praying it was just overly dramatic fatigue, I fell immediately into an exhausted, fitful sleep, to be awakened at 5am with intense pain between my shoulder blades, under my ribcage, and severe nausea. None of our typical tricks worked, and it became pretty obvious that I was having a “biliary” incident and needed to get to the ER. I’m technically supposed to go to Sibley where my hepatologist has privileges, but it was a Monday morning in DC rush hour, and we didn’t have time to waste. By the time we left I could barely walk and was much more comfortable rocking on my hands and knees. (BTW – that is a VERY effective way to get immediate attention.) Our biggest fear was that I had a gallstone trapped in my main bile duct (I don’t have a gallbladder, but residual stones can still cause problems.) And the other concern was pancreatitis, a dangerous condition that often accompanies liver disease.

fleurs

Our tribe jumped into action with food, flowers, and love.

It took a matter of minutes to get an IV placed that provided immediate relief from the cocktail of zofran and dilaudid. Once my pain was controlled they did a battery of tests. (Can someone explain why the word “battery” means “a bunch of” as well as the necessary component to keep my remote controls working? They don’t seem at all related.) Despite what it FELT like, the agony I was experiencing appeared to be nothing terribly serious, just a case of biliary colic. My liver enzyme tests showed elevations confirming that it was indeed a “real incident, but the testing for pancreatitis and gallstones was negative. So wtf is biliary colic?

So because this blog is supposed to be part education and part advocacy, I feel it’s necessary to share my experience with my “livah sisters.” Feel free to stop reading if you are squeamish about bile.

APPARENTLY…it is not good for folks without a gallbladder to indulge in “all the trimmings.” Your gallbladder, which stores and releases bile, helps to process f at, and without it, the liver still has to work extra hard to process the bile to break down those fats. After gallbladder removal, this happens more sporadically. And those “trimmings” put stress on an already overtaxed liver. So, basically, I ate too much and had to pay the $250 ER fee to be told that. Biliary Colic can hang on for a while, and thanks to my deficient immune system,it  drained my energy and sparked a bit of a domino effect with all of my other issues. Liver disease is like that….you can be lulled into a state of complacency when your liver function tests are good, and you can almost forget it’s there.

teaIt was a disappointing end to a great week, but in searching for silver linings, I will certainly be more cautious about what I am eating, and my diligence has paid off with a nice chunk of weight dropped in the time since Thanksgiving. I also escaped what could have been a much graver illness. And when you manage multiple illnesses, or “whack a mole” as I call it, the more info you have, the better you are able to WHACK THE MOLES!

So that’s where I’ve been – overeating, paying emergency room fees, dieting, starting aggressive new treatments for the lyme, and learning to love jello again.


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