Lakes, Ribbons, and Changes

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

 

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

 

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

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

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

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

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

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

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

lake

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

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

 

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

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

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

Honey

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

we send him off to “go get it.”

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

So much love.


LymeSplaining Part 4: (Diagnosis)

Lyme ribbon1This is my fourth installment on Lyme disease, as Lyme awareness month wraps up. (But I’m in no way finished talking about it.)  If this is your first time stopping by, you may want to back up and start here. The connections I’ve made with fellow Lyme warriors have further illustrated the fact that everyone in the Lyme community has a long story to tell about their path to diagnosis. Each narrative is different, and yet achingly similar. Contrary to popular belief, most Lyme warriors have no idea when they were been bitten (which means we can’t answer the “when did the tick bite you?” question;) we don’t display a bulls-eye rash (only 20 % of people in the United States are lucky enough to display the rash), and – like myself – have experienced months, or even years, of seemingly unrelated symptoms before we find out that the underlying issue is Lyme disease.

key-lyme-pie-diseaseWhen I received confirmation of my own Lyme diagnosis, I joined a club with over 300,000 “members” diagnosed with Lyme each year (a number that is estimated by the CDC.)  ILADS (the International Lyme and Associated Diseases Society) suspects that it’s much higher, with cases being vastly under reported or as yet undiscovered, hovering around 440,000. Let that number sink in for a moment. I will wait.

300,00 new diagnoses. Every. Year. That is higher than the annual rate of breast cancer diagnoses, estimated at 250,00. It’s more than the number of new cases of melanoma, which is around 87,000. And the only diseases that seem to eclipse Lyme are heart attacks (660,000 per year!) and diabetes, with 1.2 million diagnosed every year. You get the point. You have a new diagnosis, and a lot of company.

'Doctors scare me.'When I finally had actual, “verified on paper” proof that I had Lyme disease I experienced profound relief, grateful for an explanation for years of symptoms that didn’t seem to connect. (And, if you’re like me, you didn’t want to keep telling people that there is something else wrong, because you sound like a broken record. Or a hypochondriac.) I kept threatening to steal my Aunt Katherine’s line for her tombstone, which was: I TOLD you I was sick.” Recently a fellow lyme fighter, while waiting for test results, lamented that “If this ISN’T Lyme, I don’t know what I’m going to do.”  It was Lyme, and it ended three years of myriad symptoms that no doctor could put together.

My initial consolation was short-lived, because I quickly learned that I was at the beginning of a marathon, instead of reaching the end of a diagnostic mystery.  It’s a relief to be able to name the reason that you’ve had a strange collection of symptoms for so long….but because ticks infect you with multiple diseases, once you have a positive Lyme result, it’s time to start digging even more – because you have to discover what “gifts” the ticks left for you, and where they hid them. It’s like the worst scavenger hunt ever. And depending on how much time has elapsed from that tick bite, you will require different levels of care.

surgerycartoonI recently spoke with a doctor who said that she diverges from much of the mainstream medical community because when she sees patients within her specialty area and notices a cluster of other symptoms, she directs them to get tested for Lyme. This is the exception – not the rule. And she is diagnosing at least one new case per week. (And she is neither a Lyme Literate Doctor or an Infectious Disease Specialist.)

Consider the following stories – from my real-life and my online Lyme communities:  I know one brave soldier who suffered for two years with debilitating anxiety, insomnia, word recall issues, GERD, neck pain, hypoglycemia, and gout. Sensing something was wrong, he went to his doctor for every single symptom – which was not his typical response. Multiple times he brought up Lyme as a possibility and was summarily dismissed. Another lyme fighter in my circle had years of respiratory infections, bouts of bronchitis , migraines, strep throat, and repetitive sports injuries – all of which necessitated multiple doctor, specialists,and pt visits. None of which raised his Primary Care Doctor’s concern that it could be Lyme related. My own story echoes the same patterns – I had years of chronic UTI’s, searing pain in the bottom of my feet when I woke up in the morning, and unbearable exhaustion. None of the five specialists (gastro, rheumo, endocrine, family doc, urologist) – wait, that’s six. None of the SIX doctors I was seeing raised the possibility of Lyme disease. In all three of these cases, the Lyme question had to be initiated by the patient.

The doctor I mentioned above is lightyears ahead of her colleagues, understanding that our area is “ground zero” for Lyme, and when she sees patients with a constellation of symptoms, she says that she has to at least consider underlying Lyme infections.

But here’s the other problem….unless you were bitten by the nefarious tick within two weeks of any diagnostic bloodwork, the labs ordered by mainstream physicians are unlikely to produce positive results, even if you DO have Lyme…..which is why you need to find a Lyme Literate Doctor who understands the intricacies and the art of putting together a comprehensive panel of testing to unravel the chaos wrought by something the size of a grain of sand. And, as I mentioned a few weeks ago, LLMD’s (Lyme Literate MD’s)  rarely take insurance. Doctors have to contract with insurance companies, who allow maybe 15 minutes per patient, and they have to have a high rate of turnover to stay afloat. (I am not at all blaming doctors, by the way – this is the system in which they have to operate.) But it’s part of the “beast” that is Lyme.

To the delight of my sons, last fall I wrote about how I reached a diagnosis with a title that made them super popular with their friends. But the short version is that for two years, I had daily symptoms of a UTI, but only tested positive on the FIRST doctor’s office “dipstick” test. Though I remained symptomatic and miserable for two more years, I never again tested positive for a UTI, and was told that it was inflammation – or interstitial cystitis. But I knew it was caused by a pathogen, because every time I had to take antibiotics for other things, my UTI symptoms abated.

overwhelmedAfter pouring through some very helpful online patient boards  I found a group discussing interstitial cystitis, and many of them were seeing Ruth Kriz, a nurse practitioner who practices in DC, and was gaining some traction treating women with interstitial cystitis. Except, it isn’t really interstitial cystitis because there are actual pathogens that can and should be treated with antibiotics. Ruth found that 98% of her patients have one huge thing in common: Lyme Disease. Many of the people on the Inspire boards were flying ACROSS THE COUNTRY to see her. Ruth found a lab in Texas that does testing at the molecular level, and low and behold, I mailed my pee to Texas and finally got some answers. Layer upon layer of bacteria – E-coli, klebsiella, pseudomonas, and enterococcus. One year later I’m not symptom free, but I’m 75% better thanks to Ruth.

If you have recently received a Lyme diagnosis, or are suspicious of Lyme, here is a link to another lyme fighter  who had Ruth as a “guest” on her blog one day, to explain why the diagnostic process is so complicated. And her second guest post is here, spelling out approaches to treatment, and offering helpful resources.

If you are newBreathely diagnosed, you probably feel like you are drinking water from a fire hose. If you are a seasoned “brave soldier” (to borrow my friend, Kelly,’s phrase) you are probably sick of being sick. But I am confident that if we keep pushing, and keep sharing our stories, the “Plan B” that Lyme brings doesn’t have to wreck our futures. I believe the mainstream medical community will eventually catch up, but we have to keep advocating for better diagnostic tools and a cohesive body of knowledge about treatment that will help 1) get people diagnosed more quickly and 2) get them well a whole, whole lot faster.

lymeadeThe key, I think, is to try to make lemonade out of Lyme. To search harder for silver liningsThis tiny blog has led at least 9 people to get tested and diagnosed with Lyme since I began writing. I’ve cleaned up my diet. I’ve learned to say no to things to conserve my energy for the people who need me. I’ve lowered expectations for myself. And I’ve experienced such love from people who didn’t have to lean in during this time, who owed me nothing, yet poured themselves into making my life easier and lighter and bearable.


If you are a new Lyme fighter,
you owe yourself time to grieve before you make that lemonade. You will become that brave soldier, consuming rivers of information and medications, learning to advocate for yourself, and watching for side effects and detox reactions (known as herxing). Give yourself a few days to eat ice cream and watch movies, and then start thinking about how you can weave  joy into your new lifestyle. At least now you know what you are fighting, and you can write your own Plan B.

So much love,

happy place

My doctor prescribes two weeks of Maine lake therapy each year.

Jenny

I am battling Lyme, in addition to Immune Deficiency and Liver Disease. But…I actually feel pretty good. More about Jenny HERE

 

 

 


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

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,

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

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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.

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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.

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