Friday, September 13, 2013

New York: The Farewell Tour - The Graves Revisited

Hmmm. By accident I deleted the first portion of the Farewell Tour. Maybe some things are cathartic when writing but not meant to be read. I'm gonna go w/that.

So. Yeah. I never introduced my traveling partner and "driver," Vito. Vito has seen me at some of my finest moments ... the good, the bad, and the Lyme induced. This trip to NY leaned heavily toward the latter two although we did eat some great pizza (I know this is not "allowed.") Just this past weekend as we drove from his brother's home we were listening to NPR. One of the stories was about all the people a reporter met while hanging out at a NY Thruway stop for 24 hours ... several of them couples. Some "in love," and many just plain road weary. As the reporter said, "the way to test a relationship is to spend long hours in the car together" Vito snorted. Or chuckled. Not laughed. I pretended not to hear him. (Note to Vito: I heard that!)

That evening in the hotel room as I sobbed and wished I was alone, Vito announced he was was going out (probably also wishing to be left alone!) I suggested he go for round two at the great pizza place in town yet I swear, I swear, I SWEAR he said he was going to Walmart (which stunned me as we both HATE Walmart with a mad passion.) So off he went to Walmart and I lay on the couch and sobbed. Then I watched TV and sobbed. Then I took a bath and sobbed. Finally I climbed into my bed and sobbed. I really, really, REALLY had wanted to see my aunt and uncle's graves. REALLY. I felt ripped off. I felt hurt. And mostly I just FELT. Like ocean waves of feelings .. not lapping at my toes or lulling me to sleep. Kind of tossing me up on the shore over and over and over reminding me that it was bigger than I was and no amount of staring it down was going to allow me to "win." All that "feeling" bruised my heart, and the sobbing gave me a headache. Finally I got angry. I mean where the HECK was Vito??? Yes, he's an explorer by nature but how much exploring can one DO in a Walmart? REALLY!? So I texted him, "How long are you going to be at WALMART?" I got one right back that said, "I'm trying to get the key in the lock. What are you talking about?" I did not get out of my bed and open the door for him.

During the Walmart discussion it became clear to me that I was dealing with some Lyme issues. Vito didn't go to Walmart, said he never mentioned Walmart. I believe him ... he hates the place. It would be much more like him to go take photos (which is exactly what he did.) Clearly my brain was not working correctly nor were my out of control emotions. I'll admit to being an INFJ and really good at "feeling" but this was crazy over the top. This was more than tired. This was Lyme brain/emotions at its finest. (Worst.)

In the middle of the night I sobbed on the couch because I hadn't found my aunt and uncle's graves and the likelihood of being in the neighborhood again was pretty slim. So close but yet so far. I sobbed for my memories, I sobbed for my losses, I sobbed because I was tired, I sobbed because I hurt, and I sobbed because I couldn't stop sobbing. Not wanting to wake the sleeping Vito I dragged myself into the bathroom for another bath where I could, you guessed it, sob some more. No, the bath did not help. Still sobbing I sent Vito a long somewhat vitriolic email outlining my hurts. I was certain he would check his email when we got home a few days later.

Shortly there was a knock on the bathroom door and I asked, "WHAT!?" in my very best "isn't it OBVIOUS I'm in the bathroom" voice. Vito mentioned he read the email. Oh. That. Through the closed door I told him I thought he'd read it when we were back home and he made it clear that he checks his email every morning just like I do. Oh. That. Ok. Ugh. Apparently I really HAD hit "send."

He offered to take the day and go back up into the mountains to find the graveyard. I protested that it wasn't necessary and I was FINE! (Vito knows me well. Really well.) After some explaining that he knew I wasn't fine and that he really didn't want to be blamed for my not getting to see my family's graves I relented ... and mentally congratulated myself for doing so because I HATE LOSING FACE. After a couple of false starts we found the graveyard. And then things got good.

First of all, I LIKED the graveyard. It was on a hill (duh) overlooking mountains ... just what I'd want to look at with my spiritual eyes. As we found my Aunt Millie's and Uncle Putt's grave we drove past a grave that said, "Willard" and I realized that another one of my aunts was buried there. I was stunned ... and thrilled that they were all together. My Aunt Millie was glamorous: she went to Julliard, played the organ for voiceless moving pictures, smoked, drank, wore incredible clothes, and drove a new Cadillac every two years in some frivolous COLOR like frosted mint or lilac (we always drove neutral colored cars ... much more sensible.) My Aunt Alma was hysterical. Went to Julliard (where she met my Aunt Millie and they introduced my parents to each other.) Aunt Alma could talk like Donald Duck (a trait shared by my father) and would laugh so hard she'd snort. Who doesn't love a woman who snorts with laughter???

While Vito was busy taking photos of interesting gravestones I was saying goodbye to my Aunt Millie and Uncle Putt. Wrapping things up. Making them all "J" ... nice and tidy. I thanked them for all the awesome presents they sent me over the years (seriously awesome.) I thanked Uncle Putt for teaching me how to water ski and drive a motor boat. I thanked Aunt Millie for being my Aunt Millie ... for letting me sit and watch her parties. For letting me observe her life. For letting me "in" on the high life. Even if was just for 15 minutes before my bedtime.

Then I wandered over to Aunt Alma half wondering if my Uncle Ray was buried there also. My Aunt Alma died when The Lawyer was just a baby and I know my Uncle Ray later remarried in another state. I can't find him and wondered, where do widowed people get buried? With their first spouse? Or second? It was obvious from the grave that he had intended to be buried with her ... yet he isn't there. And, quite frankly, he's too old to still be living.

Perhaps I've mentioned my spiritual vibes before ... I can't remember (Lyme brain.) So in short, about 30 years ago I realized I'm "vibey." I know things I shouldn't. I "hear" things I don't want to know. And (worst of all) I FEEL them in my body. Right. Call an exorcist.
Although they're not BAD things ... they're knowings (for lack of a better term.) I fought them long and hard for several years as it's not rational, and then I gave up. Now when I'm feeling vibey I ask G-d, "just tell me ... what do you want?" Then I do it.

I get in front of my Aunt Alma's grave and feel overwhelmingly weepy. (Moreso than my usual Lyme weepiness.) So I cry. No big deal. Totally reasonable. I loved and love my Aunt Alma. And then "it" happens. I get vibey. So I asked G-d, "What do you want?" Yeah. Ok. To put my hand on her grave stone. Ooooook. Not a totally unreasonable request and nothing "wrong" with that. So I put my hand on her gravestone and say, "Hi, Aunt Alma. Sorry. I've just gotta do this." My entire body floods w/warmth (nice warmth ... not a hot flash, and certainly not Babesia sweats.) I look around. Nada. So I ask, "G-d? Do you want me to just stand here like this?" Apparently so. And I do ...while sobbing wracks my entire being. What is up with THAT? If it was my dad's grave I'd get that but my Aunt Alma? Sure I loved her ... but really? Really. I waited until it subsided and then went to find Vito who was happily snapping away. As we left I thought it was likely to be normal that I had cried. Vito asked if I was ok. I lied and said, "yes." But I don't do well lying ... especially to Vito, so I had to say, "Ok. No. Not really." And then I explained what had happened, waiting for him to either say nothing or give me the Michael Corleone look. I got neither. Instead he said, "You thought you were coming here to release New York. It sounds to me like New York just released you." Quite frankly, I was stunned. Not because maybe he was right (Vito is right 99.99% of the time.) But because maybe I was letting go.

Although I'm undecided about what to do with my shell when my spirit no longer fills my body, this is where my aunts and uncle hang out. Nice, huh? I could look at that for years.

The next day it was off to say the final goodbye to my birth mother ... it wasn't over yet.

Thursday, July 11, 2013

An Open Goodbye to My Birthmother: Barbara

Goodbye, Barbara -

Although I don't remember meeting you the first time I certainly do remember finding you 40 years later ... dead. Ultimately, I've come to recognize that this is a good thing as all a child's/adolescent's/young woman's/young mother's hopes and dreams of having a "real mother" certainly weren't going to come true in you.

Yes, it stung. Yes, I sobbed. Yes, I thought my life had ended. Yes, the first time I laid eyes on your grave in Sunbury, PA I thought I'd claw my way through the dirt to be next to you ... if only until I got hauled away. Somewhere there are a couple of photos of "us" taken in the rain by my now ex-husband. You, as I have come to know you through your gravestone, were elegant, formal, and have perfect punctuation. Me - wearing an amazingly tear stained poker face ... being photo bombed by two cranky little boys in a minivan already worn out from from a visit to their own grandparents, and a heavy dose of Gettysburg. Were it not for the tears, my face was as blank as that of one hailing a cab. The irony that a self proclaimed genealogist gave birth to a researcher is not lost on me. For as much as I curse the evil medical DNA you shared with us we also got major doses of "smart" along with some other fairly more than ok things. Oh. Yeah. I found my siblings ... and I thank you for that very detailed genealogist like obituary you wrote for yourself! Most helpful!

I had hoped to travel to NY to attend my own high school reunion this weekend, with maybe a visit to the "family plot" on the side. But Lyme, being the adversary that it is, may not make that possible. Given the opportunity I was going to stop by and tell you I won't be coming to see you anymore. I was even going to write you a letter, put it in a zippered plastic bag, and place it atop your grave with a stone (catch that spiritual significance?) But then I decided I'd worry about the potential of the letter getting lost in the rain, or the bag becoming unsealed and all my Lyme wobbly words being smeared (damn gel pens.) What if my computer crashed and I lost the Word doc ... etc., etc., etc.? Then there was the very real issue of the literal delivery. For as public as THIS is, there is also some sort of faceless anonymity behind it all. Mostly for me. Oh, it's "real," but it's not as "real" as my wanting to throw myself on the ground or worse ... sobbing stone faced in a car for 100 miles or so. Or both. I've done it before so clearly it's a possibility. What if, what if, what if. Too many shades of gray for this black and white woman!

I'd like to think that as a "mother" you thought about me on my birthday. G-d knows I sobbed my way through every one of mine thinking of you, and then sobbed my way through that song by that stupid mouse about being underneath the same moon. I saw you everywhere. Wondered if you walked the same beaches I did, read the same books, had any sort of style. I'm guessing "no,"no," and "hell yes."

So here it goes. In the mid-50's in NYC, Spence Chapin was THE place where all the "right" WASP college girls relinquished their children fathered by all the "right" WASP college boys so rich WASP NYers (Westchester Co, please) could adopt them.

ADOPTION WAS A LIE. Everything about it. Barbara, you signed no paperwork promising confidentiality. I was placed in foster care and adopted at age two. My non-identifying information told me things like you were small (true,) had blonde hair (lie,) blue eyes (lie,) and were majoring in elementary education in college. Lie. Lie. Oh. You were quite secretive about my birthfather (true) although he held a very prestigious position (big time true.) It was fortuitous that my dad kept ALL my adoption paperwork including the one where I became a ward of the State of NY. Me. Constance. ME. Two years later, by the stroke of pen and the Seal of the almighty State of New York, Constance vanished. Gone. Like into thin air. In her place, Ruth Ellen appeared. My dad told me there was a very loud verbal brawl between my foster mother, the social worker, and me (on one side of the wall) while my dad and adoptive mother were on the other. Given that all my clothing belonged to the State of New York they had to pin me down to get my clothes off and then I refused to let go of my foster mother. When I was delivered into my dad's arms I was one limp hot mess clutching a stuffed rabbit that the State, in its benevolence, had allowed my foster mother to give me. Apparently I had slept with it for the first two years of my life and she didn't want to me to be scared with nothing familiar around me. Now THERE'S a mom.

Babs, you've been the subject of much counseling over the years and most recently I rather defiantly said to my current counselor, "You know what? I didn't HAVE a mother. I had three chances and NO ONE wanted me. Not my birthmother, not my foster mother, and not my adoptive mother. I'm my OWN damned mother." (Oh, and thanks for that defiant spirit, btw, it's gotten me through a LOT.) I was rather proud of myself for that little nugget of realization only 56-58 years after the fact, and was kind of glazed over when he responded. I had to ask him to repeat himself and as I leaned forward he said again, "You're so much farther than that, Ruth. So much farther. You know what love is and isn't. You know what family is and isn't. You don't like it, but you know the truth. You're past accepting the unjust and have moved on to redefine yourself and those you let into your life through those lenses. If you make this trip, it will be a journey ... one you'll be glad to have made." I kind of shrugged it off as I was paying him until he said, "Don't forget to bring something home with you so you can remember where you've been and what you've accomplished. You do that." (He's right ... I do.)

So yeah. Next time I visit I won't be bringing you any flowers, or letters, or a stone for your grave. But I will be taking one home with me, because MY adoption is about ME. Not you, and not my adoptive mother. ME. Constance. Ruth. ME. You're in the mountains of PA ... I've got some slate from my dad's backyard in NY. I think some slate from PA might be in order. Even if all I do is walk all over it.

Goodbye, Barbara. I'm thankful I found you and am equally thankful I never met you. I don't think I'd like you at all.

Constance -

Oh. I just googled that stupid mouse song and here are the lyrics. I still can't bear to listen to it ... I guess my healing is not yet complete. But it will be ... believe me, it will be. Listening to it no longer makes me weep for you, Barbara. It makes me weep for me.

Somewhere out there beneath the pale moonlight
Someone's thinking of me and loving me tonight

Somewhere out there someone's saying a prayer
That we'll find one another in that big somewhere out there

And even though I know how very far apart we are
It helps to think we might be wishing on the same bright star

And when the night wind starts to sing a lonesome lullaby
It helps to think we're sleeping underneath the same big sky

Somewhere out there if love can see us through
Then we'll be together somewhere out there
Out where dreams come true

And even though I know how very far apart we are
It helps to think we might be wishing on the same bright star

And when the night wind starts to sing a lonesome lullaby
It helps to think we're sleeping underneath the same big sky

Somewhere out there if love can see us through
Then we'll be together somewhere out there
Out where dreams come true

Wednesday, July 3, 2013

Why Dressing My Truth Does Not Involve DYT Recommended T4 Colors: Quasi Redux

First of all, I can't even believe how many "hits" my DYT post got. I mean, really, I'm dying on the vine over here, people.

But as I've languished for the last few years and lost most of what was once mine, I've had lot a of opportunity to think through, and more fully process information I may have at one time espoused.

Here's the deal. I am very, very thankful for DYT and very, very thankful for learning that I am a T4. And whew ... am I EVER. That's called "Energy Profiling" and Carol Tuttle communicates that brilliantly. But where I "fell down" is believing that my best look involved the colors associated with it. What to do, what to do. First off, sell of all items I KNOW make me look like death warmed over (goodbye, ORANGE) and usher in the colors that work for me.

Just that easy, just that quick.

I think Energy Profiling is brilliant and every single human being should have this in their "tool box" of self awareness tools as well as communication. I raised three T4s and a T2. The Entrepreneur wasn't called "Mr. Sensitive" for nothing. His "just the facts, Jack" brothers were undeniable. All felt like strangers in a strange land. All are T4s. I wish every single teacher on the face of the EARTH had to read about varying personality types and associated learning styles. IF education is about the student (yes, I'm still that idealistic) then how much easier would it be to KNOW what techniques to try to best help a child achieve their potential?

But I wax philosophical ... which is one of the reasons I was drawn to DYT years ago. It's not about "being pretty." It's about knowing oneself and being one's best self. BUT. Correlation does not imply causation. YUP. This means don't pin me down and I am my own authority. I'll do my research, listen to those I respect, and take everything under advisement so I can PROCESS. VERY T4. Color does not fit into that equation anywhere. I LOVE Energy Profile and am so grateful to have that self awareness. But color? Color does not equate to an EP type, an MBTI type, or any other personality profile.

Yup. I dress my truth and live my truth ... which is much more important to me anyways.

Wednesday, June 19, 2013

My Personal Lyme Story: Part 2 - Treatment

Let it suffice to say that I started writing this in May. Maybe I don't really need to say much more regarding how treatment is going. It's hard, it's working, it's like taking baby steps across a bed of hot coals.

But back to the beginning ...

When I learned I had Lyme Disease I spent a lot of time online researching different treatment protocols. There are many options from which to choose, but I decided that as I'd had it for easily a decade, I needed aggressive treatment. Having seen "Under Our Skin," I decided to go with an LLMD who followed Dr. Burrascano's treatment protocol.

Not as easy as it sounds ... first of all many LLMDs SAY they will follow Dr. B's protocol yet have never read it (really.) OR, they'll work that into their own favorite protocol (a deal breaker.) I made an appointment with a doctor in Chicago who, although controversial, had some great recommendations. The weeks/days leading up the appointment were fraught with fears/tears/and much indecision.

We all know I "plug in" spiritually and so was in almost constant prayer about this and try as I did, I did NOT feel settled or at peace about any of it. Vito always loves a chance to go to Chicago and go grocery shopping; I also know he was very, very, VERY concerned and wanted me to see a doctor ASAP. Vito is Mr. Prepared. Really, the guy should have been a Boy Scout (actually, it's just fine with me that he never was) ... my point being, when I am with him I NEVER worry that we will get lost, run out of gas, or anything! He puts my ability to plan to shame ... almost obsessively so. Needless to say, when he called me the night before we were to leave to ask for the address, I was STUNNED (and a little perplexed.) I mean, addresses and directions are HIS thing, not mine. Now I have to be sick AND figure everything out? Not cool, Vito. Not cool.

A little huffy I opened up my computer and typed the doctor's name into Google's search engine. BOOM. The Chicago Tribune front page popped up outlining his grievous offenses (all of which were ABSOLUTE deal breakers for me.) I have never been so upset in my life. Vito probably offered to come over for moral support. Who needs help crying? I was doing a really good job all on my own. In truth (as I reread this) he DID come over as I was actually, and I'm not even close to kidding, hysterical. He hung in there with me while I sorted things out, fully agreeing that trust is an issue for me and if I can't trust my doctor I'll NEVER have a good relationship w/that physician. Point taken, V. The next morning I called the doctor's office and cancelled. I'm sure the receptionist knew why and I didn't even feel good enough to murmur words of encouragement.

I decided to see a widely known LLMD in New York and had to wait about nine more weeks of agony. Vito flew into NYC with me, we drove to see my mom upstate and visited an awesome doctor and human being (as well as a nature photographer ... a HUGE positive indicator for Vito.) After a review of my latest lab tests (which were way more negative than those in August) and a brief physical exam he declared that SOMETHING was wrong ... but that he couldn't label it Lyme Disease although he was convinced it was a bacterial infection. Yeah, ooook.

As I had seen Babesia squiggling across a Darkfield screen he treated me for Babesia for a month, and when it didn't make a difference he took me off the med and put me on a single antibiotic. This went on for almost a year until I asked him, "We all know Lyme is a clinical diagnosis, what's it going to take to get one out of you?" When he responded with, "A Bull's Eye rash" I knew we were done. Really. Even disabled I know the difference between objective data and a clinical diagnosis. A Bull's Eye rash is pretty objective.

Quite frankly, I was terrified all over again as I knew I was going to be starting at ground zero IF no damage had been done by my previous treatment. I fairly quickly zeroed in on a couple of east coast doctors and then was directed to another website. It was intriguing. This doctor absolutely followed Dr. B's protocol aggressively yet while treating the WHOLE patient (diet/lifestyle/supplements/meds.) Having worked in the field of "Chronic Fatigue Syndrome" and "Fibromyalgia Syndrome" for 11 years this doctor was well acquainted with the myth that there is no root cause of either "syndrome,"(see also: collection of symptoms.) When tested for Lyme Disease all this doctor's former ME/CFS and FMS patients were positive. I had found my doctor!!!

About six weeks and many vials of blood later, a good friend of mine drove me half way across the country to meet the stranger who would become my new BFF (doctor style.) I IMMEDIATELY felt comfortable with the doctor and staff. My test results are clearly positive and I'll never have to take another Lyme test again to "prove" myself to ANYONE. To recap, in the bacterial department I have: Lyme Disease, Bartonella, Babesia, and Erlichia/Anaplasma. No need to run down the four viral components as there is no specific treatment for them.

So. The nitty gritty.

Drug 1 - No problem. (Treats Bartonella and Anaplasma)
Drug 2 a week later - A slight headache and dizzy for a few days. No big deal. (Treats Babesia)
Drug 3 a week later - This one is THE mainstay of Babesia treatment and, whoa. I sweat so much I felt like a Slip and Slide.
Drug 4 at the end of Month One - NOW it's getting tough. (My first official Lyme med!)

I am not yet cyst busting and my symptoms for the past month have been nothing but frightening. I held my own for the first couple of weeks and then hit the wall. (This is a figure of speech as I don't have the strength to hit a wall ... although I do have the lack of coordination.) I was no longer just feeling like I had been curb stomped. My glands have swollen so much it has become hard for me to turn my head. I drool. I stagger like a drunk. Sometimes I can't hold my head up. I have some nifty psychological symptoms.

Last night my IC (interstital cystitis) kicked in to the point where I couldn't move. Couldn't drive myself to the ER. Couldn't dial a phone. I felt like I was being continually stabbed with a dull knife. (Note added in June ... Vicodin worked but I was a complete blithering idiot in an email to my LLMD.)


And now it's almost mid-June.


And now it's a few days later.

The good news: Based on the past 60 days of pure torture I'd say I'm winning. It's just not fun. But I've always chosen winning over "fun" every day of my life. If the cliche' "what doesn't kill you makes you stronger" holds any weight, then I Am Superwoman.

THAT is how my treatment is going.

Oh. Another Lyme patient recently asked me, "Is there any other way to go through this?" Um. No. No. No. No. No. This is moment by moment, breath by breath aggressive warfare. There are no Warriors who have not gone head first into battle. Personally, I'm blasting away with all I've got (unilaterally.)

YSMV (Your Symptoms May Vary.)

Monday, June 3, 2013

June -

May and Lyme Awareness Month are over, but my desire to advocate for those with invisible illnesses remains. No matter what one's diagnosis, life is to be lived ... even if through tears. As my body adjusts to yet another medication I find myself enjoying the views from my window and being thankful to be able to watch the day's end.

Sunday, May 26, 2013

My First Official Herx -

While promising Part 2 of my personal Lyme story, the disease took over. I am in aggressive antibiotic treatment and drugs #1, #2 and #3 were not problematic in any sort of incredibly memorable way. (Although their cost is enough to make me weep.)

Enter Drug #4. Whoa. All the classic signs of a herx showed up on Day 4 ... headache, chills, swollen glands, body aches, neuropathy, visual disturbances, the urge to vomit from my toes every 30 seconds, etc, etc, et al. One day I sobbed all day for no good reason and the next two I slept like a drugged person for the same reason. A real smorgasbord of symptoms. I hate to admit to this, but I was vaguely excited in that "DEATH TO SPIROCHETES" kinda way. For awhile. Like two weeks.

I have bladder issues. Interstitial Cystitis, to be exact. It can be a bit problematic from time to time but, hey ... I have Lyme Disease. What's a little IC among friends (IC is a symptom of the bacterial co-infection, Bartonella.) I had some slight "uh oh" signs/symptoms about a week ago and just upped my water intake. Whew. But it wasn't getting any better. It was, in fact, getting much, much worse very, very quickly. My entire pelvic region felt like it was on fire and was too tender to even touch. A friend of animals large and small, I dumped my cat off my bed onto the floor lest he even attempt to put his paw on me.

Ironically, I was online with a bunch of women who also have Lyme when the big one hit.

BOOM. Within a few minutes I was having breathing problems, unable to sit up, pretty much unable to move. My head went wild with the possibilities. No doubt my appendix were rupturing (wrong side.) I had an ectopic pregnancy (um, I'm 58 and had my tubes tied in 1989.) Gotta be an exploding ovarian cyst (yeah, highly unlikely at this stage of the game.) The ladies encouraged me to take both Vicodin and Ativan which I did seconds before I emailed my LLMD.

My LLMD (Lyme Literate Medical Doctor) is amazing and literally returns emails in a triage fashion. Of course, I have one LLMD. Who knows how many patients my LLMD has (and offers the same support!) But, because I reread the email I sent later, I know said this, "This is Ruth. I think something is terribly wrong with my stomach and I'm in so much pain that I took a Vicodin AND an Ativan and I don't know what to do because I don't know what this is and I'm really really scared that I'm going to die soon."

I got a very calm email back stating something like, "Ruth, please always remember to tell me what meds you are on. If we are treating Bartonella (we are) and you have IC (I do) then the spirochetes are reacting to the meds and are attacking your bladder."

I wrote back, "YEAH but what do I DO!?!?"

"Read the treatment manual." Well, DUH. I'd liked to have asked myself, "WHY DIDN'T I THINK OF THAT" but clearly, I was not thinking clearly. I was hurting. I thanked my LLMD for the time, the Vicodin kicked in, and by the next morning my bladder didn't hurt at all. I didn't even feel like I had been hit by a Mack truck. Only a minivan.

While I still have herx symptoms I am not literally and figuratively in the same place I've been in for the past few weeks. And I'm certainly not rolling around on my bed crying and gasping for air. Believe me when I tell you this, I am soooo thankful.

This experience has made me gain a new respect for "the herx" and its power. I've been a little cautious going out of the house alone because I really don't want to fall to the ground and scream in the grocery store. But doing life solo, this must be overcome. While I can deal with it if I don't have much food in the house, Larry has a tough time doing life sans cat food. And he has demonstrated before that he has the ability to make the lives of those who love him a living hell.

I have now laid in a supply of canned tuna (for me,) and both cat food and kitty litter for him ... should this ever happen again in this decade. My household supplies rival that of a diagnosed hoarder pre-Y2k. I Am Prepared. I mean, if anyone needs an extra five or six dozen rolls of toilet paper I'm your girl. But hands off my Epsom Salts and apple cider vinegar. I've got bugs to fry.

Sunday, May 19, 2013

No Treatment Post Yet ...

Ironically, I am way too ill to write much at the moment ... which I suppose is something to talk about in my own treatment post. To quote my LLMD "it gets worse before it gets better." Good news. The meds must be working because it's WAY WORSE.

But in the meantime ....

Thursday, May 16, 2013

Myra -

I know my own Lyme treatment post was supposed to come next, but sometimes life just happens. Last night was one of those times.

I think I've mentioned my BFF, the PSYCHOtherapist w/whom I went to high school; shared a deep and abiding mutual admiration; and continue to now. No, she's not psycho, but she is a gifted therapist who is at the top of her game career wise. After this her mad skills will take her in any direction she wants to go. Ooooh, the stories I could tell about her (and she about me.) Usually the same story from different vantage points.

* The time we were making a jean skirt out of a pair of Levi's and detail oriented Ruth left the room while the impulsive PSYCHOtherapist "just tried something." I remember walking back into the room and seeing "the look" on her face. When I asked, "You CUT them, didn't you?" she just nodded at me. I probably turned around and walked back out.

* I remember her mother's exquisite china, and more importantly, her liquor cabinet. Myra was a fan of Port and Creme de Menthe. "How do I know?" you ask. Because the PSYCHOtherapist and I poured ourselves a teacup full of Creme de Menthe and while we were sipping it heard the garage door open. Myra could sense things out of her control miles away ... she surely knew fully well what was going on in her family room as she moved quickly through the house. What was I supposed to do? Let my best friend get in trouble with her mom? No way. I calmly drank the rest of the contents of the teacup and still struggle with mint chocolate chip ice cream (not that I get to ice cream anymore!)

* The day the PSYCHOtherapist introduced her best friend to one of her male best friends ... and that's all I have to say about that.

* A sibling relationship that rivaled my sibling relationship.

Throughout our 40+ year friendship we've been there for each other through thick and thin. We are each other's touch stone ... there are times that no one else will do. Last night and today were two examples.

I know Myra has been ill for awhile, but in true Maniac style she never let on except to those closest to her. It's been a long road fraught with sibling challenges, blended family challenges, and the challenge of bringing together a family spread across the country. But the PSYCHOtherapist has been at the helm the entire time and when she felt others needed to lead, she was the rudder ... still staying the course.

I awoke at 3:30 AM this morning awaiting the usual sheet soaking sweats that come w/Babesia. Nothing happened. I tried to go back to sleep. Nothing happened. As is my normal middle-of-the-night-wakeful-period protocol, I asked G-d if there was anything He wanted. The PSYCHOtherapist came to mind and I prayed for her.

At 3:46 AM I received a text, "Are you there?" Why, YES, I was. Myra passed last night around 2:00 AM. The PSYCHOtherapist and I exchanged a few texts and talked more today. In the back and forth of the conversation surrounding services I said, "What really matters is that ten years from now you can look back on this and be ok with your decisions. Even if they're not ones you'd have chosen." She quickly agreed and then I asked for HER advice in my own maternal situation. My blessing of a BFF said to me, "We can give those we love the honor of respecting their decisions ... even when we know in our gut they are not right. To do anything else would not be respectful. And YOU KNOW OUR MOTHERS!"

She's right. I do know our mothers ...

May G-d watch over your household, Myra. I can only speak for the PSYCHOtherapist but I know you are soooo proud of her, even if those words never passed your lips. She came "home" for you, she stayed with you, married an amazing man, is the mother of two highly accomplished compassionate young women, and grandmother to three beautiful little girls. Thank you for giving her to the universe, Myra.

A hand well played.

Sunday, May 12, 2013

Mother's Day: Honoring ALL Women

While I did not write all of this, I wish I had .....

Honoring all women today ~

To those who gave birth this year to their first child—we celebrate with you

To those who lost a child this year – we mourn with you

To those who are in the trenches with little ones every day and wear the badge of food stains – we appreciate you

To those who experienced loss through miscarriage, failed adoptions, or running away—we mourn with you

To those who walk the hard path of infertility, fraught with pokes, prods, tears, and disappointment – we walk with you. Forgive us when we say foolish things. We don’t mean to make this harder than it is.

To those who are foster moms, mentor moms, and spiritual moms – we need you

To those who have warm and close relationships with your children – we celebrate with you

To those who have disappointment, heart ache, and distance with your children – we sit with you

To those who lost their mothers this year – we grieve with you

To those who experienced abuse at the hands of your own mother – we acknowledge your experience

To those who have lost maternal relationships due to the disbelief of chronic illness - I grieve with you

To those who lived through driving tests, medical tests, and the overall testing of motherhood – we are better for having you in our midst

To those who have aborted children – we remember them and you on this day

To those who are single and long to be married and mothering your own children – we mourn that life has not turned out the way you longed for it to be

To those who step-parent – we walk with you on these complex paths

To those who envisioned lavishing love on grandchildren -yet that dream is not to be, we grieve with you

To those who will have emptier nests in the upcoming year – we grieve and rejoice with you

To those who are awaiting new life either through pregnancy or adoption – we anticipate with you

This Mother’s Day, we walk with you. Mothering is not for the faint of heart and we have real warriors in our midst. We remember you.

Saturday, May 11, 2013

May Day: Raise Your Hands Around the World! (My Lyme Story: Part 1)

This weekend Lyme protests and rallies are being held around the world. In addition to blogging we've been challenged to hold one person's hand and tell them "our story." Well, there's nary a hand to hold, and due to the opposable thumbs issue, Larry is a no go.

Lucky you! Hold out your cyper hands and let me tell you a little story. Really. Let me hold both hands ... you and me, knees to knees.

Previous to 2000 I had been married for 20 years and was/am the mother of four, with whom I stayed home.
* A divorce that was finalized on December 24th, 1998 left me the unmarried mother of four, with sole physical custody.
- No alimony or spousal support of any kind.
- My sons' father paid his "mandated child support" and that was all. No help with school clothes. No assistance with sports/music/art lessons. No trips for the kids. No spending spring vacations with them.
* It was very clear that "sole custody" meant "flying solo." I needed to find a very real job very quickly. Which I did.

I won't bore you with the details but it was a pretty bumpy road for awhile. I dusted off my BA in Psychology and a provisional Elementary Teaching Certification and started working on my M.Ed while substitute teaching/taking care of kids/living life. And finally, I was hired at a local school in town.

That spring break, the first week in April of 2002, I caught the same flu my sons did. I sat on the couch for a week completely drained. At the end of the week they were better. I wasn't. But I dragged myself back to work where I began to sweat and run HIGH fevers of 104. I took time off to "heal." After several ER visits and a diagnosis of "Fever of Unknown Origin" I was sent home and told to drink lots of fluids.

By May I was unable to work at all. I literally couldn't make it through the day. With GREAT sadness and shame, I had to get a sub for the rest of the year. During a routine body scan to find out WHAT was wrong with me it was discovered that my gallbladder was about to rupture. I was asked, "Aren't in you in any PAIN?" Well, yeah people, I've been telling you this for about six weeks now. I have CRAZY pain and you call me "drug seeking." I'm not an idiot. I don't trust ANY of you anymore. Give you fuel for the fire over which you roast me? I think not.

I had my gallbladder removed but didn't "bounce back" as did the rest of the patients in my room. I noticed my abdomen was turning black. I asked the doctor about it and was told, "Oh, that's a little blood in there ... your body will reabsorb it." Not one to complain, I lay in bed looking out at what was finally SPRING in Michigan, and then I saw them. All the little white Christmas tree lights were on in all the trees! It amazed me and I asked a nurse why the holiday lights were on in May. Things began to happen very quickly. My bed was inverted and I heard my doctor's name being called, "STAT! STAT!" He rushed in and explained to me that my gallbladder had been so infected that it had adhered to my liver which tore during surgery. I was "bleeding out." He asked me to sign paperwork so he could go back in and fix my liver. I refused. Nope. I had just HAD surgery the day before. I was SICK. NO MORE SURGERIES. He explained that he NEEDED to go back in. Nope. Not having it. No more surgeries. Let me repeat ... I just HAD surgery the day before. NO WAY would my insurance cover it. Finally a friend offered to pay for the surgery. I signed the paper. We "ran" down the hall and I was being told to take my contacts out. I started to cry realizing that something was VERY wrong. I prayed for my sons and begged G-d to let me see them again. Please, please, please ... don't let me leave w/out saying goodbye to them! I was put into a little room with about five nurses hooking me up to something. Things in both arms, bags of blood. Lots of intense, curt voices. Lots of urgency. I watched from the upper left corner of the room. This very pale woman looked back at me. I watched this woman being rushed into surgery where the doctors were ready and advancing with scalpels. She SCREAMED, "Noooooo!!!! I'M AWAKE! I'M AWAKE!"I stayed with her.

I woke up in a room covered with blood and an INSANE need to use the restroom. I was not given permission to get up. I just kept leaning on that call button and reminding them that I WAS going to relive myself. Even if it was all over their bed. Finally my doctor rushed in ... also covered with blood. I asked, "What happened to YOU?" and he responded with, "Yup. It was a geiser." I laughed, RELIEVED that I was finally going to be ok. When I was out of recovery and back in my room a nurse asked, "Did you know?" Well, yeah, I did. I knew something was really wrong. She leaned closer to me, took my hand and said, "I know. Most patients do." My fever came down to 102 and I was released. I cried when my friend left me at home. My sons' father refused to drive me to one of our son's 8th grade graduation so I missed it. Whatever was wrong wasn't fixed. None of it.

I actually taught for the next five years "crashing" every summer. BIZARRE high fevers. Hair loss. Drenching sweats. Delirious. And sooo ashamed. In 2007 I began to notice new symptoms. The sleeping pill I'd been taking since 2002 stopped working. My body began to go numb. I couldn't keep a thought in my head. The ANXIETY was nothing I had ever experienced. We're not talking "generalized" or even "situational." We're talking insane. I could have clawed drywall off the walls.

In late June I went to the doctors where I was pronounced mentally unstable and anorexic. I was eating 3k calories a day, keeping a food diary, and was being called anorexic. I grew up in NY, I know "the rules." I asked to be tested for Lyme. My doctor looked over her shoulder and laughed at me, "YOU don't have Lyme Disease!" I fired Doctor #1. This went on through about 30 more doctors until I read Dr. Ritchie Shoemaker's "Desperation Medicine" and saw myself there. I read "Mold Warriors" and saw myself THERE. I flew to MD to see him. In December of 2007 I was declared a "moldie." In January of 2008 I met with a doctor here in MI and was given the diagnoses of Chronic Fatigue Syndrome and Fibromyalgia. I lay on the couch three or four more years ... volunteering where I could, and reading everything I could get my hands on. Even if I had to reread it 1,000 times because I now have the attention span of an ADD five year old. By this time I was sporting a PICC line for IV fluids as I was on that what-the-heck weight loss program again. I was interviewed both in a local newspaper and on local TV about ME/CFS. The emails poured in and the reporters forwarded them to me. Other than the people who wanted to tell me I had demons or some sort of unrepentant sin in my life, the general consensus was that I had Lyme Disease. To prove them WRONG I called "the lab of all labs" and ordered a test kit from IGeneX. (DO NOT SETTLE FOR ANYTHING LESS!) My doctor agreed to sign the requisition form and I literally hyperventilated myself to the lab down the street and had my blood drawn while mentally rehearsing my response to all those who thought I had Lyme and were wrong.

Two weeks later my test came back positive. I do not have ME/CFS or Fibromyalgia, both of which are a collection of symptoms. I had found the mother lode of root causes ... the diagnostic black vortex. I have Lyme Disease.

Stay tuned for Part 2: 18 months of treatment so far ...

Tuesday, May 7, 2013

You Know You're a Bad Ass Lyme Warrior If ....

1. Your day revolves around healing and you're good with that.
2. You no longer compare yourself with who you "used to be" and know that who you ARE, is real.
3. You not only know to swallow capsules differently than pills but you can down handfuls at a time.
4. You "rock the detox!"
5. "Cheating" means having had anything processed, anything with sugar, or with white flour.
6. You can walk into a restaurant and tell them what you need to eat w/out feeling like a PITA.
7. You sell everything you own to afford treatment and delight in the fact that your closet is REALLY clean. You don't even MISS television.
8. You realize your body is acting like a two year old's and you don't "scold" it for being sick. You take care of it.
9. Doctors tell you, "You have a HIGH pain tolerance" and you think, "Pffffft, you ain't seen NUTTIN' yet!"
10. You stop mourning what you lost and are thankful for what you've gained:
- A recognition of what loyalty is.
- A new definition of a true friend.
- An increased sense of personal strength.
- A richer spiritual life.
- The removal of all toxic people w/out a SHRED of guilt.
- Learning to laugh at yourself. Really laugh.
- The ability to let go and move on, truly knowing life has more in store for you than anything left behind.
- Not only having the time to "stop and smell the roses, but doing so; being amazed by the universe and things "everyday people" take for granted.

Saturday, May 4, 2013

May Day!!! May Day!!!

The term either conjures up pictures of little kids and May Poles or a military emergency.

Well, it's an emergency alright and this is officially "May Day" for Lyme patients world wide. An emergency of pandemic proportions as well as the world wide day of protest.

STOP the collusion of uneducated academics, Big Pharma, and insurance companies. It could be YOUR disease that is denied next.


Tuesday, April 30, 2013

The Positive Post aka "I Get By With a Little Help From My Friends."

After I announced that my next post would be positive, and I PROMISED, I promptly had a no good, very bad day. It appears, like Alice, I have fallen down the proverbial rabbit hole, although Medicare calls it the "doughnut hole." Nice. I can't even eat doughnuts.

So I struggled. What on EARTH would I talk about? I turned to one of my favorite groups of women and posed the very question, "What's positive about Lyme Disease? I said I'd write something positive. What do I do?" There was a whooole lot silence. Finally someone volunteered, "I'm going to need to think about that." More silence. More silence. And then finally, one of the group cheerleaders said, "I appreciate the simple things in life more than I used to." There was RAPID agreement.

As I hung out w/them a little bit longer last night I watched one member voice a fear and several rally to encourage her ... one who has even shared the same procedure with much relief. There was some more discussion of a variety of things and then one by one we left for our evening routines. But as always ... someone said, "THANKS! I love you guys!" And that's what positive about Lyme Disease. Love. Or, more precisely, the ability to recognize it, give it, and receive it.

Along the road to recovery we lose a LOT of love in forms we once found it. We are disbelieved, struggle to explain, and are smacked down again. We use our canes/crutches/wheelchairs to pull ourselves back up only to be dealt another blow. A deep friendship is gone. A parent bows out. A spouse/partner leaves. Ironically what the Chronically Living need MOST is to be Chronically Loved. So we love on each other. A broken, tattered field of warriors crawling toward each other with fingers extended. "HERE, touch me. I'm HERE. Touch me. Hold on. Really. I won't let go. Hold on."

I am blessed with some incredible traveling companions for the journey. All are different, yet each fills a different need of mine and I pray I am able to give back to them. While sometimes it seems to flow uphill, in the end, it all just flows.

I belong to several groups or organizations of Lyme patients. In one we are all survivors of other groups ... either by our own decision or not. And like the walking wounded, we gravitated towards each other. I was contacted by a complete stranger after being the target of some misdirected rage. All she asked was, "Are you ok?" Well, NO, I was not ok!!! I was HURT. We spoke by phone the next night and I sobbed out my entire life's story to a complete stranger. She listened gently and responded with something like, "Of course you're hurt and no, I don't understand either. It will be ok."

The next day I received a PM from a woman I'd never heard of, asking me the same thing. "Are you ok?" NO! I am NOT ok. More sympathetic murmurings, more reassurance that I hadn't done anything wrong and to let it go. LET IT GO!?!? Over time this woman and I became very close friends and we Skype regularly. Sometimes she's sobbing and sometimes I am. Sometimes she's the cheerleader and sometimes it's my job. We've toured each others homes via Skype and gone over our med/supplement/food regimes with each other. I've waved at her husband and one of her children. She knows all about each of mine. I watch her let her dogs out. She sees Larry. There are times when one of us says to the other, "I am SOOOO sorry to bother you. You must think I'm a BIG BABY" and the other says either, "No, you're not" or "Ok, we'll be big babies together."

Do we hurt less? No. But we hurt together. Nothing says "real" like watching another person in pain gasping and grasping for something to hold on to. And what do many Lyme patients do? We wiggle our fingers and inch closer to each other. We frequently say things like, "If only we could all be lying on couches in the same room. Taking turns bringing each other food, or meds. Watching 'The Big Bang Theory.' Yeah. What do you want to watch?" These are STRANGERS. Intimate strangers.

WHO ARE WE? Art directors. CEOs. Social workers. Psychologists. School psychologists. Teachers. Former models. Engineers. Scientists. Lawyers. Public service workers. We are each of us, we are all of us. We span all ages, political affiliations, religions (or not), socioeconomic statuses, and personal lives. These people love me. ME. And I love them. LOVE.

I really can't go into the others much as I don't want to divulge any privacy (HEPPA form? Did you fill out the HEPPA form???) but I love my peeps and my ladies. I can ask ANYTHING of ANYONE and get a straight answer ... and I'll shoot one right back at them. In the beginning I was afraid of sounding "stupid"or asking something that had been asked 1,000,000 times before, but I had missed the post. I've become well acquainted with the search function of many a site and try to do my homework first. But if I'm particularly foggy someone will give me a piggy back ride through that pea soup and sometimes I carry them. Sometimes "we" remind me of the movie "Defiance." No Lyme Patient Left Behind.

We joke. Oooooh, our humor is DARK. But it's humor. Sometimes I laugh so hard I have tears running down my face. WHY? Because I KNOW what someone meant when they described a certain yoga pose they could not hold. WHY? Because just the day before I disgusted myself with my own body's inability to do the SAME ONE. We mourn together. Cry for each other. Pray for each other. Send "light and love." Hug each other. We circle the wagons.

We get by with a little help from our friends. A LOT of help. A lot of love. The healthy should be so blessed.

Sunday, April 28, 2013

Emotions and the Lyme Patient: Part 2 - The Real Deal

Now that I've written about grief and had a tiny public meltdown I think we're ready ... the scene has been set.

Again, to depersonalize a little I'll have to go into list mode. BTW, depersonalization can be a GOOD thing ... it's the body and mind's way of setting emotions aside for a bit until they're up for the challenge. That being said, I don't think I'd work on becoming an expert in it. (It's encountered a lot in those with PSTD. Wait. Chronically Living might put one in that category. I'm going to need to think about that more.)

Anger: Yeah, this is part of the stages of grief but it's not ONLY dealt with while grieving. Sometimes we're just ANGRY. For those suffering with and/or recovering from Lyme Disease there are actual medical reasons for this. Spirochetes are busy drilling away in our heads and this wrecks havoc on our emotions. I have not experienced "Lyme Rage" but can say I'm a whooooole lot more "snippy" than I used to be. Sure, things bothered me when I was healthy; but I either blew it off, sweat it out on my treadmill, or chewed on it until I could swallow it. Not so much anymore. I've noticed it's harder for me to internalize anger than when I was healthy. While I have NOT punched or cussed anyone out, I've noticed that I have the occasional desire to do so. Sometimes I yell at them in my head or talk it through with someone (most helpful!) Although on a particularly wintery day I came upon a man w/out a disability tag or license plate hovering in a highly coveted disability parking spot while his wife ran into the store. As I trudged through the snow to my own car, I passed him and loudly suggested he "man up." Ok. I've never used that phrase in my life before. Ever. I must have used it because my former students, fourth graders, often did. There was an "exchange." When he sarcastically asked if I was going to call the police I actually whipped out my phone. Whoa. Never done THAT before either. Although I don't remember it, a friend says he was concerned the rather large angry man was going for his car door. I do remember my friend stepped between the car and me. Does this mean I was acting like a ten year old? Well, yes. Yes, it probably does. I'm going to blame the undiagnosed spirochetes for the car incident, but now that I have a diagnosis I'm more aware of my responsibility to keep my cool. Even if I have to count to 1,000,000, or roll my eyes, or just spin on my heel and walk away.

However, there cases of Lyme Rage that involve violence, including domestic violence. My totally off the wall, coming out of nowhere guess on this is that those who have anger issues previous to Lyme are more vulnerable to potential Lyme Rage. JUST A THOUGHT. The good news for Lyme patients is that intense negative emotions, including rage, lessen or are eliminated with treatment.

Anxiety: The Chronically Living can get some pretty bizarro symptoms that WE don't even recognize as symptoms. Some may affect thinking and some produce anxiety all on their own. Those who are anxiety prone are always on guard, wondering when and from what direction the next bell jar will descend. Will the trigger be recognizable? Will they be in public? Will they be embarrassed? The symptoms of anxiety can range from a feeling of unwellness, to a vague sense of impending doom, sweating, trembling, difficulties with breathing, and/or rapid heartbeat. For starters. There are many of the Chronically Living that actually think they're losing their minds, having heart attacks, strokes, and experience symptoms that mimic life threatening conditions. Responsibly they go to the ER where they are pronounced, "fine."

FINE? Not.

Confusion: Two things: confusion and cognitive impairment (I, myself, bear the latter label.) The number one rule among the Chronically Living is to question everything. "Are you sure I'm not crazy?" "What if my diagnosis is wrong?" "What if I AM crazy?" "What if I can't do it?" "I can't even think straight anymore." Even though our brains and emotions may feel like jello we present with a stiff upper lip and a smile on our faces. Not an easy feat. We do it for you, the healthy. Amongst our own we cry, hug, laugh ... and at times get a glimpse that maybe we've been stripped of everything but the joy of being understood by another human being. Even if it's "only" one who Lives Chronically.

Cognitive impairment is a different issue. This leaves us standing in the middle of the room wondering why we're there. No, it's not aging, and not we're not experiencing existential despair. We just can't remember why we're there. Literally. I have left laundry in the washing machine to mold, forgotten I was cooking, or filling the tub, or where I'm going while driving. Fortunately those days appear to be behind me most of the time, and should continue to improve with treatment, but many of the Chronically Living do not regain what they've lost. We feel ashamed of ourselves. Two major areas: spelling and math. I won't tell you how this former math teacher responded when asked to count backwards from 100 by seven's ... but it wasn't pretty.

Envy: Ever single human on the face of the earth deals with envy from time to time. It's not that the Chronically Living want to steal your joy/bliss/whatever ... you define that for yourselves, it's just that we wish WE could be normal, too! Truth. I envy my 85 year old mother who has more energy than I do. I'm envious when I hear people complaining about all the errands they ran on a given day. Or the "spring clean up" yard work. Or that grueling drive back from spring vacation in Florida. Yeah. I'm envious.

Typically the Chronically Living tend to be comparatively chronically poorer. For those of us who prided ourselves in our ability to provide for ourselves this is a Real Hit. Not only can we not afford our medical treatment/s, but we certainly can't afford all the things that would make Chronically Living a lot easier, let alone "fun" things. If I cogitate on this one too much I slide back into grief. I devalue myself which leaves me not liking myself very much.

WHERE ARE YOU, ROBIN WILLIAMS. Please tell me one more time it's not my fault!

Again, part of the stages of grief, but sometimes a very real medical component of chronic illness. How we wish we could just "snap out of it," or get busy with a project. Usually we're too tired to do much of anything let alone having to break down the steps necessary to accomplish a "project." My oldest grandchild was born in January and I still don't have his quilt even DESIGNED. I do now own graph paper and colored pencils though. Baby steps. Baby steps toward Mr. My Baby.

The Chronically Living deal with depression surrounding being "sick" all the time, the inability to function normally - feeling so limited. What to do? What to do? The first line of defense for ANY body, and I do mean that literally, is a healthy diet. Not what's healthy for YOU but what's healthy for an individual patient. But more about diet in another post. For those who are able to exercise it's highly suggested. I'm working my way through a "Yoga in Healthcare" DVD. I'm in process. I'm a Believer so I pray, read when I can, or meditate on the ways G-d has provided for me in the past. I'd like to tell you I stick to a regularly scheduled disciplined spiritual life, but I don't. Not to be irreverent or anything, but I only do so when the spirit moves me. I also try not to obsess/feel guilty when feeling down ... there is nothing innately wrong with being down when Chronically Living. Counseling? Yes, please. Medications? At times medication is highly recommended and absolutely the right step to take. Being on antidepressants is not a character flaw. It's a strength to recognize what one needs.

Discouragement: I'm on Pinterest and have read all the motivational "pins" possible. Sorry, Nike, I just can't do it. Pretty much any of it. I've spent years reading research, tried ever single suggestion, pushed myself, "paced" myself by letting myself rest and NOTHING seems to make much difference. Taking care of myself is a full time job, one that others have told me is selfish (now that's enough to provoke some serious Lyme Rage!) I get most discouraged when I've put hope or expectations in things or people who let me down.

Fear: This is a big issue. Many chronic illnesses are difficult to diagnose and the process can be PAINFULLY slow. (Like decades.) The symptoms are so many, so varied, so weird, and often mimic other serious illnesses. It's hard to imagine one can be this sick and not die. For the Chronically Living there is the fear of always being in pain and unable to handle it. There is the fear of rejection, poverty, and the very real fear that one might die before being diagnosed. Upon becoming so disabled I could barely lift my head, a friend used to regularly drop off cases of water and some canned chicken for me every few weeks. Recently she told my doctor that each time she left she wondered if it would be the last she'd see me alive and/or if she'd be the one to find me dead. To be honest, I used to worry about my youngest son finding me dead ... and what burden THAT would be for him to bear for the rest of his life. But the beat goes on, I'm still here, and on the road to healing.

Loneliness: There are no words for the loneliness felt by the Chronically Living. Even those in marriages/partnerships or at home with family are lonely. Don't get me wrong, in general I LOVE being alone, but loneliness and aloneness are two different beasts. We feel both. Thanks to the wonders of the internet I am "friends" with some amazing people w/whom I share a diagnosis. We support each other, encourage each other, and share educational info. as well as personal tips for improved quality of life. But we are all still very much alone in our own bodies. A friend might be literally screaming in pain from a migraine. What can I REALLY offer? Some encouraging words and an emoticon or two? Yeah, that's pretty much it. It DOES help to know others understand, but the bottom line is that she's in her body and I'm in mine. Now matter how much I want to comfort her, I just can't climb in there with her.

Then there is the loneliness. We. Are. So. Lonely. Frequently we are no longer able to participate in pretty much anything. We have been labelled as "unreliable" due to our illnesses. This breaks our hearts as many of us have spent our lives being the reliable one in given situation. It's difficult to attend social functions and it's only natural that friends fall away. We understand, and rationally it makes sense. We. Are. So. Lonely. What do we have to talk about with others? No hobbies, no relationships, a lot of the Chronically Living are no longer working, marriages and partnerships frequently dissolve. We. Are. So. Lonely. Over time the Chronically Living drift further and further apart from the "real" world. There are days on end without a literal change in scenery. Yes, this is why I'm so crazy about the bucolic views from my windows. Visits from family and friends are exhausting although so very welcomed! I was fortunate to eat brunch with The Lawyer and The School Psychologist yesterday. I felt painfully aware of my perceived decline in social skills. But because I love them, and they me, I am confident we will all look back at this time in my life as a hurdle we crossed together. DARN. Now I'm all teary ... I love them both so much!

Grief: Please refer to a previous blog post on the stages of grieving.

Rejection: The Chronically Living frequently deal with feelings of rejection. Living in a society that values productivity can lead to feelings of worthlessness. Many people define their self worth by their accomplishments. Days that I'm able to get out and do an errand count as a HUGE accomplishment for me. To others it's done w/out a thought except maybe one of imposition. Oh, to be healthy enough not to worry about running out of energy in the middle of a grocery store! Frequently the Chronically Living make easy targets for others. Our own boundaries are weakened, we're lonely and we don't always recognize when we're continually on the giving end of a relationship. We easily become "dumping grounds," supposedly grateful for the contact. Yeah. No thanks. I understand that Chronically Living makes some healthy people feel threatened or afraid. If it could happen to me it could happen to you. And believe me, it could. You can't catch my disease from me any more than you could from the person you sit next to at work, on the train, or stand in line next to at the grocery store. You talk to them ... please don't reject us because of our illnesses.

And, to be fair, sometimes the Chronically Living reject others out of the age old adage of "it's better to leave than be left." I, for one, am guilty of this. I'd rather acknowledge the inevitable and spare myself the grief of being left again. It's an odd dance. Just yesterday I left a Facebook group that is closing soon. Why leave early? So I don't have to hang around and watch the goodbyes. I'd rather leave on my own terms. We don't get to control much ... sometimes "leave group" is as good as it gets.

Shame: It's tough to think that I am proud of my accomplishments, but I am. I've won some hard fought battles. I'm not just a survivor but an overcomer ... a victor in so many areas of life. And yet I feel shame that, for right now, those days are behind me. In the "what did you do" conversations of life, "taking a shower" doesn't really count for much. We're ashamed that we took our healthy days for granted as do pretty much all healthy people. We're ashamed that we complained about our jobs, being "overloaded" with responsibilities for which we now long. We hang our heads In Shame.

Weariness: Sometimes we're just plain old weary. This is more than the than crushing fatigue chronic illness can cause. We are weary to our very bones. We are weary in our spirits. Symptoms don't let up, doctors don't understand, people are unintentionally insensitive. Yeah, we get weary. Really weary.

We live in a society in which one of the first things people ask is "what do you do?" And they mean, "for a living." Stay- at-home-moms and those who have never "had" to work feel guilt and worthless over this one. Yeah. This isn't even close to that, and as a one time stay-at-home mom I know the reality of the differences. Many of the Chronically Living don't have the strength or energy to even accomplish ordinary household chores let alone hold a job. So the whole "what do you do" question can literally be a jaw dropper. One I had to prepare for. My response is now, "I am healing from Lyme Disease" but for a long time I found myself scrambling for appropriate responses. For awhile I did the "I'm retired" only to be asked why I retired so young. Whoops. Time to find a new tactic. What is our worth? We're not the people we used to be and we never will be. This isn't a bad thing long term, but living in the moment can make it challenging. I struggle with feeling "needy" and I DO need help. But I do NOT enjoy feeling needy and unable to do what I used to with one hand tied behind my back. At times I wonder, what do I have to offer others? Really. Why would anyone even want to hang out with me when sometimes even I don't even like hanging out with myself!

I came up with a list I keep by my bed.

* I'm a child of G-d (oh, Desiderata!)
* I'm honest.
* I'm funny.
* I'm a loyal friend.
* A good parent.
* I'm a good PERSON.

And it goes on for quite awhile ... I read it as often as I need to. In fact, the paper got so crinkly I scanned it into my computer/phone for quick access in case of emergency. There are many crisis' of the Chronically Living soul.

There you have it ... A to Z, or at least W. There are many, many more emotions that come and go with a flicker of a memory; a "trigger" of some sort ... a song, a fragrance, a photograph. It's like grief, a veritable Hotel California ... one the Chronically Living can never leave.

Next post? Something POSITIVE. I promise!

Saturday, April 27, 2013

Emotions and the Lyme Patient: Part 1

Too sad to write this morning ... grieving on multiple levels. Odd that I wasn't until AFTER I wrote yesterday.

Hmmm. Like a tidal wave.

I'll try it again tomorrow. Live gently? Please?

Thursday, April 25, 2013

The Stages of Grieving Chronic Illness

Good grief.

For real.

Without grieving there is no moving forward; no coming out of the tailspin of a devastating diagnosis.

No one does it better than Elisabeth Kubler Ross, whose life work revolved around grief and its five stages. "On Death and Dying" remains a classic. While a lot of her work focuses on actual physical death and the loss of a loved one, the Chronically Living cycle through this as well.

The stages of grief are "simple" enough to last a lifetime.

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

If only it were as easy as a five point checklist and one were able to cross off each step when finished, and move on to the next in an orderly fashion. Yeah. No. It doesn't work that way. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We may feel one, then another, and back again to the first one. All within a nanosecond.

1. Denial -

"This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle."

We've all been there in one way or another. After the death of a parent/grandparent/sibling/spouse. Upon finding out one's marriage is not salvageable. The loss of a job/income/home.

Personally, I have said the following things either out loud or in my head when I've received bad news. I mean bad news. Life changing news.

* NO!
* This can't be happening.
* That's unacceptable.
* I refuse to believe that.
* Are you SURE?


2. Anger

"Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, and yourself, but also to God. You may ask, “Where is God in this?

Underneath anger is pain, your pain."

Truth: anger scares me. While others' anger leaves me shaking, my own anger can feel like it will consume me. Sometimes denial is a whooole lot easier. But not a good place to stay. Two local psychologists have been very helpful to me in this area as well as some dear friends. I'm not going to kid you, nor bore you with the details, but my life has not been easy. I've had a lot to grieve as an adult making myself at home in the world (thank you, Joyce Maynard!) I can get stuck in anger; cataloging all sorts of perceived injustices. Is it helpful to me? Yes, and no. Yes, in the sense that I know what I'm working with. No, in the sense that looking at the list makes me ANGRY. Or, in reality, I feel pain. Deep, long lasting pain. Bereft. So thanks, Dr. G. and Dr. H ... you've brought me further than I had ever imagined possible, but ultimately this is a path I walk alone. I'm thankful that G-d has given me the strength to acknowledge my losses. And, yeah, scars heal over but they're still visible. For years after a C-section every time I leaned up against my kitchen sink I'd hit that "sweet spot" ... the one no doctor ever tells you will stay w/you. In the beginning I'd HURT when I hit it accidentally, but as time went on and my son grew older I'd twinge and think of how much I love him and how thankful I am he exists. It doesn't hurt me at all anymore and hasn't for decades, but there are times when showering I look down at it, smile, and say "hey, sweet pea!!!" Not that I'm imagining ever thinking lovingly of chronic illness, but there are lessons to be learned in the trenches. Lessons "healthy people" may not necessarily have the opportunity to receive. Don't I feel special. Yeah, sometimes I actually do.


"After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others? Then can I wake up and realize this has all been a bad dream?”

We become lost in a maze of “If only …” or “What if …” statements. We want life returned to what is was; we want to go back in time, recognize the illness more quickly; if only, if only, if only. Guilt is often bargaining's companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of the loss or losses. We want to remain in the past, trying to negotiate our way out of the hurt."

Think Robin Williams to Matt Damon in "Good Will Hunting: "It's not your fault. It's not your fault. It's not your fault."

Only when I was able to realize that I didn't "deserve" to be bitten by an infected tick, and the fact that my body was run down was a reflection of my circumstances and not some cosmic or personal act of will, was I was able to stop w/the guilt and self blame. I don't bargain about my illness too much anymore, but I still find myself revisiting the concept from time to time. We all do.


"After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a monumental loss would be unusual. When a loss fully settles in your soul, the realization that your (fill in the blank) is gone and is not coming back is understandably, depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way."

Let there be no mistake, having to stare a chronic illness in the face is circumstantially depressing. NOT to be sad, anxious, and depressed is to be mentally ill. (This is where "What not to say to the Chronically Living" kicks in. Do not tell us to see one more doctor, try another antidepressant/anti-anxiety med or whatever. Unless you are a medical doctor with a degree in the area of our illness, please keep all your inexperienced and uneducated thoughts to yourself. Really. You're not helping us. You're HURTING us ... and then we have to grieve THAT. Not to be harsh ... just to be clear.)

Yes, that would be just a little bit of anger speaking.


"Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This stage is about accepting reality and recognizing that this new reality is the permanent/current reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others, or take them on ourselves.

Finding acceptance may be just having more good days than bad ones."

Even if they're just inside our heads.

There are times when I think I've accepted my chronic state and then times when I try and figure out ways to sue about 30 doctors. Huh. Anger. Pain. There are times I still think, "I bet I've learned enough now, huh G-d?" Bargaining.

This blog is a giant step toward my own acceptance of my situation. I may be down, but don't count me out.

Sleep well. Maybe tomorrow I'll talk about the emotions we encounter along the way .. sometimes all at once just like the stages of grief. A tidal wave.


Wednesday, April 24, 2013

A Day in the Life of a Lyme Patient

I will say this, I always have amazing intentions and since being in treatment (tx!!!) I'm having more and more spurts of motivation. A spurt, however, does not an action make. It's more like a "WOW, I should do THIS!" and then I have to go lie down for an hour.

Today I woke up REALLY encouraged for a variety of reasons, and was determined to fit in ALL my Lyme goodness. But what I keep forgetting is that my former 24/7 "get up and go" no longer exists. Now I'm more like an "I'll think about it. Maybe. What did you say? No. What were we just talking about? No. I don't want to ... what??? I SAID that? Oh. I probably did, huh. Wow. I have NO memory of that. Fair enough. I have no memory of pretty much anything." Yeah. My kids make jokes that I can always watch previous seasons of "Breaking Bad" again and again and be gloriously horrified every time I watch it. "Law and Order?" Yeah, I could quote entire episodes now.

But I did get in the meds, some YOGA, the amazingly and completely exhausting detox bath, and two meals. Two out of three ain't bad. And then I remembered ... I needed to empty the garbage and change the cat box. Larry's been complaining for a week now and when I looked in at it I actually apologized to him. So today I accomplished things that take other people a couple of hours and it took me six. Really.

About the yoga. In fairness to myself, while it was labelled for beginners it was NOT labelled for the incredibly deconditioned. Really. In many areas I have retained my former levels of flexibility (go, muscle memory) yet at some points I just watched this relatively young woman do things that I couldn't even figure out. Makes the Hokey Pokey look like child's play. Yup. That might have to suffice for humor this evening.

I will say I do not feel like a Bad Ass Lyme Warrior tonight. I feel all kinds of Babesia sweaty and absolutely ready to get off the roller coaster. I don't feel exactly defeated, yet I'm very aware that that I'm five weeks into a 156 week program. Not exactly half way and "coming out the other side." I hear the first four months are the toughest ... I'm 1/4 way through that! PLUS, I have NOTHING even remotely funny to say.

And people are being snarky on Lyme forums tonight. Full moon.

Stages of Grieving might be on deck. Either that or The Chronically Living and Emotions.

I'm kind feeling both right now.

I'm going to bed.

Tuesday, April 23, 2013

And Sometimes Life Just Happens -

Yesterday I made a schedule so I could make sure I could accomplish all I need to do to be a "compliant" patient and fit everything that needs to be done into a timely fashion. (Because really and truly, there are drug interactions to consider!)

What I forgot is that LIFE happens during treatment! There are phone calls to answer, bills to be paid, garbage to be taken out, cat boxes to empty, friends to chat with, laundry, dishes, grocery shopping, and the ever familiar weekly or bi-weekly medical appointment. I try to multi-task so that I can be frugal both on gas and my energy, and try to fit in an errand when I have an appointment whenever I can.

I will admit I messed up from the get go. Forgot to drink "the shake" for breakfast. Ok. Grace. Grace. Extending grace. Remembered to bring my 10:00 meds to my appointment and didn't even feel weird about whipping them out and gulping them down (although I think I've now sufficiently learned that "gulped" pills do not a happy stomach make.)

I've had some MAJOR issues going on in my life and I've been trying to make peace with some situations such that I am able to respond in a way that makes ME comfortable w/out causing another too much stress. It's really all a variation on the theme of letting go and acceptance, although the hopes/dreams/names of the not-so-innocent change as the situation warrants. I will say being among the Chronically Living has greatly impacted the amount of drama I can handle (very little) and my "bullsh*t quotient," which is now also quite low.

After my appointment I went to the grocery store and noticed how QUICKLY I could shop. Organic produce. Apple cider vinegar. Wild caught fish. OH. And two 2X weekly pill boxes; one green (day) and one blue (night.) I erroneously planned on every month being the February of Leap Year, and only had enough boxes for 28 days. Problem solved. When I load up next month's worth of supplements this weekend I'll be much more prepared and, therefore, much less frantic. I probably won't even cry this time. I was actually rather proud of myself as I'm branching out and trying new salad veggies in my daily "Immunity Salad." And, to be honest, organic veggies are REALLY cool looking. They actually look like they came out of a garden and have green leaves on them and everything (carrots and beets.) I rather smugly lined up to pay for my items while perusing the carts of those around me. Salty snack foods, cookies, beer, cigs, boxed Mac and Cheese and the ever popular Ramen Noodles. CLEARLY these people had never heard the benefits of HEALTHY eating. And then I did that, "STOP, bad thoughts, STOP" thing in my head, because the truth is ... until recent blood work for food allergies and a mandated organic diet by my LLMD, I only THOUGHT I ate a healthy diet. What I actually ate were things that OTHERS claimed were healthy foods. Ok, maybe for them, but certainly not for me! So, inside my head I shut up rather quickly. To pass the time in a line that claimed to be "express," I looked for gum to help relieve that nasty "tin foil mouth" thanks to one of the MAJOR meds I'll be on for a very long time. Well trained now, I flipped over the pack to read the ingredients. Oh my goodness. Who knew? I'm not sure WHY I thought the back of the package would read, "gum," but it didn't. I couldn't even BEGIN to attempt to pronounce those words, even in my head. I felt defeated. I did not buy the gum.

I was blessed by a visit from a dear friend this afternoon who helped me whittle away the hours by helping me make lists (I LOVE LISTS) as well as advise me on some color/design choices for a project. She's a gifted artist and honest to a fault ... I'd have trusted her with my children and I don't say that about just everyone.

At 2:00 she reminded me to take my Activated Charcoal with 32 ounces of water. This is a new one for me so I was actually glad to have the company as I popped the pill, drank the water, and sat on the couch with my stomach sloshing.

I was going to drink "the shake" I was supposed to have at breakfast for dinner. I forgot. But I did eat a green apple and almond butter with my 7:30 meds. That counts. And while I didn't FORMALLY exercise I did walk to the mailbox and back and throughout the grocery store. That counts, too.

But what's NOT going to happen today is that I am NOT going to write about how to remove a tick! WHY? For several reasons. First of all (and pretty darned important) I'm not sure I've ever SEEN a tick let alone extract one. I did carry around a "Tick Twister" on my key chain all last summer out of sheer terror. I even watched a video online about how to use them. I purchased one for each of my sons and tried to nonchalantly do the, "Hey ... just thinking about you and got you this cool lime green Tick Twister thing." I'm pretty sure they thought I was overreacting at the very least. I'm also pretty sure they didn't affix them to their key chains. Whatev. Just don't come crying to ME asking me to dig a tick out of your navel. Ok. That was kind of some dark Chronically Living humor. I'd want them to contact me but I will admit I get squeamish just thinking about it. I'm not afraid of wounded, bleeding, broken boned youth ... but ticks? They scare me. They aren't fixed with a gentle cleaning, hydrogen peroxide, casts or band aids. Not even Super Hero ones which I refused to purchase on general principle. But I wish I had, because to kids a band aid IS healing. But I'm not going to go down the "parental regrets" path. But someday ... remind me to tell you about the Lawyer and his radio rights, or lack thereof.

Yup. I'll try and imbed a link about removing a tick. What I know is more about what NOT to do.

* Don't grab at it with tweezers.
* Don't smoke/burn them.
* Don't break them into pieces. (Like ticks break. As if.)
WHY? Because if you tick them off (ha, ha) they will literally puke their poison Lyme laden guts out into you. You do not want this.

* If possible, take a photo of it on you. (Camera phones have taken "evidence" to a whooole new level.)
* And, if possible, capture it alive and seal it up to take in for analysis.

W/out further fanfare, the Tick Twister video. I am not endorsing this product although I did have one on my key ring ... which made me feel slightly ahead of the curve "aware." And a tiny big environmentally hip. I shoulda bought the Ray Bans.

The link did not imbed.

Try this:

Monday, April 22, 2013

Tick Prevention: Dress Like a Dork

Although this was not on my list of possible blog posts, it occurs to me that while ticks don't DIE during the winter, we're coming into their season and consequently, ours (for those of us who are entering spring/summer.) With those joys comes risk; I would never advise fear but would heavily advocate for knowledge.

I've watched some parents with Lyme put their children's treatment needs before their own; so many go w/out so that their children have their needs met (medical or otherwise.) Although my sons are adults that Fierce Mommy Heart is always at the ready. I have only been aware of one of my sons ever having a tick, and he found it himself. I think I'm thankful for that ... I might have gone straight to the overreaction of which only parents are capable. This is well likely the reason behind the words, "Don't tell Mom." But with four of 'em, someone eventually spills their guts.

How to Keep You and Your Child/ren Safe From Ticks

There is soooo much information out there about this and some is pretty restrictive; "no going outside," while some is pretty loose; "no big deal."

It IS a big deal but I think the word du jour is "balance." I don't want my grandchildren growing up fearing ticks. I want them to have the confidence that they know how recognize them and what to do if one becomes attached. (Literally. I'm pretty sure ticks are narcissists, being parasites and all.)

Here's what's commonly suggested for keeping ticks away from your home. Remember, ticks don’t fly or jump. A tick climbs to the ends of blades of grass or weeds and waits quietly with its front legs extended until it can grab onto a passing host. <"Shhhhh, here she comes!">

Exterior of Your Home

- Create ‘tick-free’ zones around your home by cutting back wooded areas and increasing the size of open lawn.
- Move woodpiles, bird feeders and bird baths as far from your house as possible. (Birdwatchers can invest in a good pair of binoculars ... much cheaper than Lyme treatment.)
- Mice and chipmunks hide and nest in woodpiles, and eat spilled food from bird feeders. Birds can spread immature ticks over great distances as they migrate, and they may drop ticks in your yard as they use feeders and birdbaths. (Contrary to popular opinion, ticks are not required to carry passports to travel between the US and Canada or Mexico. They are afforded this same freedoms in Europe and other countries worldwide. Stealth. We're talking stealth, people.)
- Keep your lawn well mowed, to a height of 3 inches or less. This lowers the humidity at ground level, making it difficult for ticks to survive. Also, mice and other small animals hosts avoid these neatly trimmed areas because they cannot easily hide or find food and nesting
materials. (People who want riding lawnmowers now have some real justification in spousal debates.)
- Keep garbage in tightly closed cans and don’t put pet food outside or purposely attract and feed wild animals. (See the above recommendation for birdwatchers.)
- Remove brush, weeds, leaf litter, and other yard debris that attract ticks and their hosts.
- Reduce the plants in your yard that deer love to eat (such as azaleas, rhododendrons, arborvitae, and crab apple trees) and increase the plants that they don’t like (such as Colorado Blue spruce, Scotch pine, boxwood, daffodils and marigolds). Extension agencies and local nurseries can offer more suggestions for your area.
- Rake back leaf litter and cut away undergrowth several feet into the edge of any woods that are on or next to your yard. (This is on my own personal to-do list. My summer landscaping priorities have changed GREATLY while writing this!)
- Eliminate dense plant beds close to your house, such as ivy and pachysandra. (Note to self: nix the thought of a maintenance free ivy front lawn. Nix. Nix. Nix.)
- Consider fencing to keep out larger animals, such as deer, as well as neighborhood pets. Ten-foot high fences may be necessary to completely keep out deer.
- Using an electrified fence may also be helpful. (Um, no thanks. I'm gonna have to pass on "stunning" any animals.)
- Keep clotheslines high off the ground and out in the open so laundry will not touch vegetation. (Smart.)
- Keep picnic tables and lawn furniture as far from any woods, shrubs, and undergrowth as possible. (There go all those idyllic romantic visions of summer picnics under the trees RIGHT out the window.)
- Move children’s play areas as far away as possible from woods or other overgrown sites. (WAIT A MINUTE. Does this mean The Adorable Grandson and his father, The Musician, will not be getting a tepee from Safta to camp in while visiting? Probably. UGH. This reminds me of when I used to try and convince my kids that camping in the enclosed front porch was FUN! I even went so far as to light pine incense to simulate being in the woods. I wasn't tick savvy at that point ... just a mom who didn't want to have to get up at 3:00 AM and rescue a terrified kid from the wilds of an urban backyard.)
- Consider using fences to keep children from entering tick habitats.
- Create your vegetable and flower gardens in the middle of large areas of open lawn. (This isn't totally horrible. Raised beds would be a whole lot easier to access out in the open!)

Interior of Your Home

It is rare for tick infestation to occur indoors. However, this can happen if a fully fed female tick falls off a pet and lays its eggs. This may occur in a location like pet bedding, carpeting, upholstered furniture, or crevices in floors and walls. In such a case, vacuum up as many of the ticks as possible, then seal the vacuum bag inside a plastic bag and, if possible, place the sealed bag in the freezer for a couple of days to kill most of the ticks. Then dispose of said bagged bag in an outdoor trash can. Wash all removable bedding or cloth items in hot soapy water before drying them in a HOT dryer for at least 15 minutes. Ticks can survive the washing machine but die at high levels of heat. (I have a friend who recommends that all clothing worn outdoors go IMMEDIATELY into a hot drier.) Apply an appropriate pesticide to all infested areas. It is best to hire a professional pest controller to perform the pesticide treatment. More often, a single tick is carried inside on either a pet’s fur or a person’s clothing. It may then crawl onto another family member, searching for a blood meal. (Kinda makes you feel all warm and cozy inside, huh?)

Inside the home, you can reduce the potential for exposure to ticks by following these suggestions:
- Keep small animals like mice and cute fluffy kittens out of your home by closing up gaps around doors, windows, and other places.
- Check your clothing carefully for ticks before you come inside, and check your whole body once you’re indoors. (I have friends that "tick check" twice a day; once after coming in from the outdoors and again before bed. The most oft recommended suggestions include soaping up and checking all over; paying close attention to hairlines, warm dark places, and in between one's toes. Oddly, navels are a big hit with ticks. Pervs. For parents of young children this can become a routine one follows when a child comes in from playing outdoors and again at bath time. Parents of older children are well advised to respect their privacy and modesty, and teach them how to perform a tick check on themselves after coming indoors and when bathing. I have heard OUTRAGEOUSLY hysterical stories of friends tick checking each other. (The best story coming from an area doctor whose hunting buddy was bitten and developed Lyme. "Do you KNOW there are no good Lyme doctors in Michigan?" he asked outraged. I muttered, "Yeah. I heard that, too." Clearly he was not a PCP ... )

If you have pets that go outdoors:
- Groom them carefully for ticks every time they’ve been outside. (One might consider shaving them down for the summer. I hear "the puppy cut" is a real hit at the groomer's this time of year. Shaving a cat might be an issue ...)
- Designate specific sleeping areas for your pets, and check their bedding routinely for ticks that might have dropped off them while they sleep.
- Keep pets off furniture where ticks can become hidden in the fabric or cushions.
- Seek your veterinarian’s advice before using flea and tick control products on your pet or its bedding.
- Remember that exposing your pet to more than one type of treatment (flea and tick collars, dips, baths, or powders) within a short period of time might seriously harm your pet.

(It's true ... animals are more quickly treated for Lyme than humans. My Big Pharma/Insurance Companies rant is further down the list of topics to cover.)

Chemical Control Options

- Applying pesticides (chemicals that will kill ticks) should be considered only as a last resort.
- It is recommended one hire a professional pest control company to apply any pesticide products.
- Before deciding to apply pesticides, your property should be sampled for ticks. Your yard may not necessarily contain large numbers of ticks, even if you live in a county or other local area where ticks are numerous, or where there is a high rate of tick-borne disease. Sampling can be accomplished by using a ‘tick drag or flag’ (white flannel fabric attached to a pole that is dragged across, or poked into, the vegetation. Ticks, if they are present, will cling to the fabric. Believe it or not, a tick drag is kind of cool. Dress code for such an event? Dork. If tick levels are high, pesticide treatment may be justified.
- Pesticides come in both liquid and granular form. The type of vegetation in your yard and the stage of the ticks that are present will help determine what kind of product is best for your situation.
* Liquid pesticides will kill ticks that are crawling out in the open.
* Granular pesticides will penetrate leaf litter to kill ticks that are hatching, molting, or waiting out the cold weather (overwintering).
For example, for black legged ticks/deer ticks) in the northeastern and mid-Atlantic states, liquid pesticides can be used to kill nymphs in the spring, larvae in the summer, or adults in the fall. Granular pesticides will kill nymphs that are overwintering in the
fall, or larvae that are hatching from eggs in the early summer. Some pesticides are restricted for use only by licensed pesticide applicators.

Here are some of the safest pesticides that are effective for controlling ticks. All products may not be registered for use in all states.
Class of pesticides:
- Carbamates: Carbaryl
- Pyrethroids: Permethrin, deltamethrin, cyfluthrin
- Pyrethrums: Plant extracts called pyrethrins, primarily for use inside the home and on clothing.

Personal Protective Measures (see also: Dress Like a Dork)

Despite your best efforts, it may be impossible to keep your yard entirely free of ticks and their animal hosts. It is therefore important to use personal protective measures.
- Wear clothing that will prevent ticks from reaching your skin, such as long sleeves and long pants.
- Tuck your shirt into your pants, and your pant cuffs into your socks or boots.
- Use an insect repellent containing DEET (N,N, diethyl-m-toluamide) on your exposed skin. ( I have heard that DEET does NOT kill ticks.)
- Use an insect repellent containing permethrin on your clothing. (One can purchase permethrin at many major home improvement stores, hardware stores, or online on Clothing should be sprayed and allowed to dry BEFORE it is put on.)
- Always FOLLOW LABEL DIRECTIONS when applying repellents.
- Be sure to check your clothing and body carefully for ticks when you’ve been outdoors.


That's it for today!

In local news I saw my chiropractor who could not BELIEVE the changes in my "gut" with a month of treatment. WOOT!!! I'm adding in a "binder" beginning tomorrow to gather up any free floating toxins (including mold toxins) and send them packing. I'm looking forward to increased healing ... may the process be tolerable.

Tomorrow. How to remove a tick if one is found on one's body (or on one's child's body.) And, as always, some general frivolity.