Between the Lines

I was at the library last month and came across a book about Lyme disease.  Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment by Denise Lang.  Unfortunately, I don't really need a book to tell me how to cope with this illness.  I've been coping for twenty-five years.  I am a "master coper". It's rare though to find a book about Lyme at the library though so I checked it out.  It just pretty much reiterates everything I already knew, and I didn't really expect to find anything in it new or shocking.  Still, seeing some of it written down has been a bit disconcerting.

In case you didn't know, I believe that I got Lyme when I was ten.  I wasn't diagnosed however until approximately 2 years ago.  This is not unusual among Lyme sufferers as the disease can lay dormant until triggered by a poor immune system, stress or some unidentifiable cause.  My story is similar to a lot of people with chronic Lyme.  I had a mystery illness that looked like the flu.  Blood tests showed nothing.  I just didn't quite get better.  I wanted to sleep all the time which is not really normal for a ten year old.  Over the next couple years I had a hip infection, shin splints, tendonitis in my ankle and knee pain. I also was depressed. I didn't know that it was depression though. The first time I decided I wanted to kill myself I was fourteen years old...twenty-five years ago.  My physical health plummeted after the birth of my son, seven years ago.  My immune system had been coping pretty well for as long as it could, if you want to call being suicidal coping.  I am still alive, so there's THAT.

Under a sub-chapter labeled Zeroing in on the Psychological Aspects there is a list of the psychological symptoms of Lyme based on the results of a nationally distributed survey of treatment experiences.  This is the list:

• Major depression
• Extreme fatigue
• Emotional instability (crying easily)
• Increased irritability and mood swings
• Sensitivity to light
• Sleep disturbances (insomnia; too much sleep)
• Getting lost in familiar places
• Dyslexia-type reversals
• Significant loss of libido
• Night terrors
• Panic attacks
• Ferocious nightmares
• Suicidal thoughts
• Mental fog
• Disorientation
• Feelings of rage
• Abnormalities of taste
• Abnormalities of smell
• Heightened sensitivity to vibrations and noise
• Depersonalization
• Spatial problems
• Appetite changes (bulimia, anorexia)

The secondary psychological problems are listed as:

• feelings of inadequacy
• low self-esteem
• bitterness
• guilt
• alienation
• doubting one's sanity (feeling as though you are losing your mind)

Dr. Brian Fallon, an NIH fellow with the New York State Psychiatric Institute at Columbia University in New York City, has intensely studied the psychiatric aspects of Lyme disease.  He explains the experience of Lyme as such that a patient will have unusual symptoms to the point of being disbelieved by doctors and family and finally disbelieving him- or herself.  Because the disease follows a waxing and waning course, Lyme sufferers can't predict how they're going to feel the next day, next month, or next year.  "Family, friends and schools say, 'Why are you okay one day and not the next?'  Add to this that many patients have negative blood tests so there may be uncertainty of a diagnosis, and then you have fear -- fear of losing one's job, fear of losing health, and fear of losing the support of family and friends who may be supportive during the first month of the illness, but when this goes on and on, friends and family may get pretty tired of it."

Reading this made me so sad.  The "secondary psychological problems" are as crappy as the primary. What if I had had this information twenty-five years ago?  What if I didn't spend years wondering what was wrong with me and having misdiagnosis after misdiagnosis?  Putting yourself in the center of a circle there are 360 degrees of possibilities in which way you can choose to go.  My path was chosen for me.   It's best not to wonder what if.  I know now that I can choose my own direction.  Lyme and uncertainty no longer choose it for me. 

Still...I'm not sure if I can find the words that accurately describe how much I want to pick up the past me and give her a hug.  She didn't think she'd live to be eighteen...or twenty-one, and she did.  Didn't really think she'd make it to thirty, and she did.  She didn't love herself and could barely take care of herself.  But she kept getting up everyday and going, and it sucked.  Now she is here with me, and I can take care of her because I have empathy.  I have so much character I can lift her up and help her forgive the world, the Universe and herself.  I can help her get past the "what if", because that's not who we are.  We are the "what is".  As crazy as it sounds, I wouldn't have it any other way.

Oh, it's true.  The Universe has totally been winking at me the past few weeks.  Instead of a plethora of physical or mental symptoms I have been beset by the hurdles and pitfalls of everyday.  I replaced the thermostat only to realize that it was not the problem.  The furnace went out...for good.  I broke my toe and some mystery bones in my foot, and continue to have mystery swelling and pain.  I was overdrawn. I didn't get the child support we so desperately need even though it is being dangled in my face with back and forth emails to Australia every day.  Easter was less this year than I hoped for Monkey. I don't even want to mention the gas bill.  (Jesus, Mary and Joseph!) My mom's GPS was stolen out of my car.  I hit my mom's car in the driveway (AGAIN!  Damn it that woman can't park! Ummm...sorry, Mom!)  I stepped in dog poop.  FRESH DOG POOP.  Everyday it seems like the Universe is just throwing enough bullshit in my way to confound me.  It's like someone has stirred the pot.  I guess that someone is me.

I keep wondering what it is that I am supposed to do.  I must have missed something.  The Universe is shouting for me to PAY ATTENTION!  I am trying to make peace with everything.  The sadness of what has come before to the potential joy that lays ahead.  I am trying to fogive Monkey's dad for being such a douchebag...but it is hard when he's such a DOUCHEBAG. I'm trying to do the best for Monkey every second of everyday.  I am trying to live with integrity in all things.  I've cleaned the closets, cleaned out my email box and cleaned up the DVR.  Next up, dancing around naked and lighting things on fire.  (Now the Universe has kindly told me that an error occured while saving.  REALLY?  REALLY?)

So, to wrap this all up in a nice little package...I'm still surviving.  It's Spring finally and it appears that I too will be reborn (or some such similar thing) with the trees and the flowers.  Things are moving forward.  When the water settles I am hoping things will be crystal clear. Look for me at 180 degrees.

The moment one definitely commits oneself, then Providence moves as well.  All sorts of things occur to help one that would never have otherwise occured.  A stream of events issues from the decision, raising in one's favor all manner of unforseen accidents, meetings and material assistance that no one could have dreamed would come their way.  Whatever you can do or dream you can do, begin it.  Boldness has genius, power and magic in it.  Begin it now.    ~Goethe

Holi-DAZE

I'm having a pretty rough time with Christmas this year.  I'm not feeling it at all.  This is unfortunate because Monkey is at the *just right * age to really enjoy it. I am attempting to drag the decorations out and put them up, but there's a lot of them and how did they get so heavy? Indiana has ripped up one Santa pillow, one stuffed snowman, 3 Christmas pencils and continues to sniff around for more.  Why am I letting the dog get at the stuff you ask?  I'M NOT.  Monkey is just so excited he is ripping through things and leaving them strewn about the floor.  It reminds me of Demi Moore rolling around in a pile of money in Indecent Proposal. I feel as though I need to avert my eyes and give Monkey time alone to rub musical trains and nutcrackers all over himself.

I have yet to tackle ANY Christmas presents and yet December continues to roll over me and try to drown me like a tsunami. December hates me. Before Christmas even rears it ugly misshapen head there is Monkey's birthday.  December 12th marks the 7th anniversary of his life and that DAY OF MORPHINE I ENJOYED.  (Ah, good times.  Good times.)  We're having a Star Wars party (again) this year.  I do count us fortunate that we are blessed enough to be able to give him a party every year at the age he can enjoy it. That being said, GOOD LORD it's overwhelming. We are having the party this year at Storyville Station and my good friend Brian, the owner, will of course take care of everything. I know it will be spectacular.  An hour and a half of sound effects and lightsaber beatdowns with plenty of costumes and cupcakes to be enjoyed by all. But this is me.  This is my life.  My lyme life.  I am so tired and exhausted and overwhelmed at just the thought of things that I'm worn out before they begin.  Just as an idea takes shape of *things to come* my brain starts the catastrophic melt down of chemicals and toxins, and BOOM.  There goes Jen. It's like some kind of self-destruct count down. No superheros to rush in and stop it before I explode into a million tiny pieces.

I am now at 15 months of antibiotic treatment. I am some better, some worse.  The antibiotics kill off the evil lyme and friends and as they die their toxins poison me.  I am only 97 pounds of girl, and I don't know how much it would take to just kill me.  How to kill IT before it kills ME?  Quite the conundrum that no one really has figured out yet. So up and down I go being tossed between Lyme alive and Lyme dead. I have spent the past 2 months reading and meeting others with Lyme in LymeFriends on the web.  The internet has given me a wonderful tool to learn and bond with others who "get it". I have met some of the nicest people and I truly believe I have made some really good new friends.  So with all the evil sickness comes happiness and hope.   The Universe balances itself out.

Life is happening so fast around here.  I'm spinning and spinning between raising a child (that means all the stuff he will eventually go into therapy for), taking care of a child (that means making sure he remains alive, moderately healthy and hygienic), fighting an unseen and invisible invader inside my body that robs me of my vital life force second by second, making sure autism symptoms do not creep back in for Monkey and rob him of his quality of life, and of course, all the day to day shenanigans and shit that compromise living.  Whew. Sometimes I feel like Chevy Chase just tied to me the back of the bumper and dragged me across the Western United States. Hopefully, when I get to where I am going WallyWorld will be OPEN FOR BUSINESS.

So, on this gray rainy morning I once again am faced with the question, "Should I accomplish something or should I just lay down and nap?"

Boba Fett the Poet. Who knew?

Just a really quick October update. I'm slack. I've been sick.  I've been tired.  I've been overwhelmed.  For awhile I was pretty sure I had been cursed.  Oh, you think that's funny?  I'm serious.

Several definitions of pox in no particular order: 1. Misfortune and calamity. 2. (Orthopox Viruses) Molluscum contagiosum (MC) is a viral infection of the skin or occasionally of the mucous membranes. 3. (Herpes) Chickenpox or chicken pox, also known as varicella, is a highly contagious illness caused by primary infection with varicella zoster virus (VZV). 4. Most common late complication of chicken pox is shingles. 5. A disastrous evil : plague, curse.

Do you see what I'm getting at here? First, I had the shingles in May.  In August, Monkey had the MC.  In October, Monkey had chicken pox.  Even though he had been vaccinated.  The dog has started limping and running on three legs.  The computer had a VIRUS and had to go to computer hospital for 2 weeks.  I feel slightly CURSED.  Not to mention the other obvious pox, Lyme.  Oh, for the love of Joanie and Chachi. What is going on? Then, big fat THEN, the mic on the iPhone quits working.  AND the mic on the earbuds.  It's as if Stephen King is quietly lurking in the background around here. Somebody get me a priest!  So now you know.  Some gypsy has put the kibosh on me and my family for an unknown devious reason. Are you laughing? Really? REALLY?

So Monkey was home from school for weeks on end.  I send him back and just a few weeks later he is home again with a cold.  Then I get the cold.  Then Neenie gets the cold. It has yet to let us free from it's mucus spewing grip. Brilliant!

So let's move on the positives shall we?  Monkey and I decked ourselves out in costumes and went to a Dead Poet's Party.  Oh, fun!  He wrote a poem and read it.  I am so proud of him.  He is so much braver than I ever imagined. And talented.  I think the most important thing involved in cultivating a talent is to just keep doing it over and over.  He does.  He writes books and stories everyday.  Sometimes it's just cartoons.  Sometimes it's chapter books. Once, it was a haiku. He inspires me.

October October
With a good ending
And a Lollipop

I found a really wonderful Lyme group online and have been visiting it every night. It's my first real experience with a chat room.  I feel like I've made friends with people who understand how sick I am.  They love to talk medicine and I love to talk medicine too. I have learned so much in just a few weeks. I feel like I need to be very careful though because I don't want to live in this disease.  I do not want it to be who I am. It's comforting to know that I am not the only one though.  I have met other people with autistic kids, GF/CF dieters and chelators.  I don't feel like the black sheep anymore.  What a relief.

I know this is relatively short, but I just wanted to get back on the horse. I've missed writing.  More later.  Maybe Boba Fett will have something to add.

Bitch....Pleeeez.

God, I feel real bad about the last post and would prefer not to be struck by lightning. Here's another pic I took at the doctor's office. We cool?

Exhibiting Inflammation

One foot in front of the other. One foot in front of the other...

I'm trying to flow, Deepak. I'm trying to walk the line between the visible and invisible, Paulo Cielo. I'm trying to connect to the source, Dr. Wayne Dwyer. And so on...except I have this anger welling up in me from which I know not where. I'm tired. I'm irritable. I'm exhibiting inflammation. I'm going to stomp on this tiny (yet getting a bit round in the hips) dog, smash this computer, write bitchy blogs.

I spent all day in the car. You would think that after spending so much quality time (EIGHT HOURS) with my iPhone listening to Elizabeth and Darcy killing zombies I would be happy, right? So why do I feel homicidal right now? Computer. You are so damn slow. I know that this bitching is completely contrary to accepted affirmation format. I want so badly to just flow. I am frustrated though. I am surrounded by entropy and it's going all mercury matrix on me. I feel like pulling the covers over my head. Sleeping a really really long time, and then some more. Quote from doctor's office today: "So the depression is completely gone?...YEP." What was not said: "So you still crazy?...SOMETIMES."

Today was another appointment with my Lyme Doctor. (I shall here after refer to him as such, since I don't want him to get in trouble for actually helping people.) The vacillation on my tongue has stopped. I know you have no idea what I'm talking about. I promised though to try to help other people so I'm writing it down. Just skip it if I'm boring you. And, no, it's not gross. I didn't even know I had it. Apparently, it is related to a nerve that is often affected by lyme and is therefore a symptom. Quote: "Your tongue looks good!"

(If that dog bangs on the door one more time to go out and be all manly and bark his head off I'm gonna..INDY! KNOCK IT OFF!)

All the other crap though has come back. Regression! Ugh, I know. Running a temp for a month, I know. Face broken out, not related, but it is totally pissing me off too. So now we are on to a new antibiotic. Interesting twist here. This one is for leprosy or the bite of a brown recluse spider. I like the term "therapeutic trial" better than "shotgun approach" or "grasping at straws". I hope I don't drop dead. Cause sometimes, just sometimes, I think I might.

(Has anyone watched Heroes lately? Totally sucking. Yet another thing to get my dander up.)

Don't get me wrong. I left the doctor's office with a smile on my face. He took a yeast swab (up my nose, perv), and I'm clean. After twelve months of antibiotics I think that's great. One less worry. I will try anything to feel better. I always think of that line from The Cutting Edge where DB Sweeney says "Fly to Mexico and shoot shark piss up my nose, right? There's a cure, right?" And before you say it, YES, I GODDAMN WATCHED THE CUTTING EDGE. Why are you egging me on right now? He also gave me some migraine med samples to try for the meniere's flare ups. Awesome. Please, I don't want to drop dead.

(INDIANA! Stop whining at me! There is no TREAT for you!)

Remember I said how I keep having dreams that I am in high school and there's one week left of finals and I can not possibly do it. I am so tired I choose (in my recurring dream) to just chuck the whole thing. I'm dreaming I'm tired and a failure in my dreams. Fantastic.

(Hang on. Gotta get Mom's whites out of the dryer. Did I not say entropy sucked? They'll be dirty and mocking me by next weekend.)

Am I being punked? No hangers, mystery dog poop and burnt out fluorescent in the laundry room. Really? REALLY?

(DAMMIT INDIANA SHUT THE HELL UP!)

So anyway, I'm reading a magazine in the HOUR I am waiting and I find an article about dreams. Refer to picture of said snippet at the top. Well, that about sums it up. Frustrated with not living up to my potential. NUTSHELL. I can check my horoscope and my biorhythm and the answer is always the same. F**KED.

I'm gonna try to end this on a positive note... NO I'M NOT.

Out of Sync

It's almost 1 A. M. and I'm downloading Pride and Prejudice and Zombies. I went to bed hours ago, but my body is on a sleep a few hours-get up and wring your hands for a few hours while exhausted-sleep a few more hours schedule. I have a trip to the doctor tomorrow in Mobile. I meant to run by the library to get some books-on-CD, but alas, my plan did not come to fruition. You see, it was sunny today and warm. I am apparently a vampire. I am apparently exhausted because I do not partake of the human blood. Or it could just be the Lyme making the sunlight unbearable, and I can only do one thing a day. Today it was the ZOO...with the cub scouts. Boy, was it a zoo.

There were about one million people dressed in knee socks and polyester milling about. Maybe just a thousand. I'm not a good judge of quantity (or distance, now that I think of it.) Monkey and I went with friends. They are sweet and they made it totally bearable. If I had been alone I'm sure I would have had an anxiety attack. It was way too much stimulation and my Meniere's was acting up. It makes things feel so surreal. I'd love to tell you about all the fascinating animals, but I didn't really feel a connection today with the animals. Normally the sea lions are all goofy and happy and waving. Today they were just swimming around ignoring the crowd. There were Bengal Tigers. Or maybe just one Bengal, I'm not sure. He wasn't as big as I expected. After Life of Pi I expected something fierce and large and menacing. Not so much. He was just kind of skinny sunning himself behind a piece of glass. I didn't even catch his name. It would have been cool if he was named Richard Parker. I'll bet every tiger is named Richard Parker now. Kind of like Jennifer or Michael in 1970. Pretty soon everyone will get sick of it and go back to naming them all Hobbes I suspect.

I really enjoy the children's zoo with farm animals. You can get up close to them and not risk losing a limb. We didn't head that way today though. We just hit the monkeys, boring, the cats, boring, the reptiles, boring, the sea lions, uncooperative, and some exotic birds. Now the flamingos...were interesting a bit. You can reach out and touch them although I would not recommend it. Their beaks look like something from The Saw. Cute though. Tiny beady eyes on opposite sides of their head, and almost as tall as me. Lawn ornaments are apparently made on a 1:4 scale. Something to ponder considering garden gnomes...

I know, you're bored. Well, it's the middle of the night, and I'm just killing time. Cut me some slack. Someone needs to go to the grocery store around here. I hate the grocery store. Bright! Cold! Over stimulation! I also know that a trip to the grocery store is the only thing I'll be doing that day. Exhausting. See, you are normal. You have no concept of what I speak. Mom usually tackles the grocery store, but since she's been working seven days a week I'd feel kind of guilty asking her to do it. So we are being pretty creative around here for sustenance. Needless to say, we're totally out of condiments, dressings and dips. I mean, not Monkey though. He's on a strict I'll only eat such and such and since we have such and such he's covered.

We did go out to eat after the zoo. Iguana Grill. Mexican. Excellent! Monkey even ate a cheese quesadilla (I had to pay him a dollar.) I had three cheese and onion enchiladas and beans and rice. I still feel like someone water boarded me. I must learn to stop myself. Love Mexican though and all the hot sauces. We never eat out. We fast food, but not outside the comfort of our home. When I said, "We never eat out." Monkey said, "We did that one time. With Duncan." "True. That was in January at McDonald's. Not quite what I meant." He did good though. Maybe we'll try this more often. Going out to eat always involves showering and dressing. Bummer.

So I think my download is complete. I'm gonna try to go back to sleep for 3 more hours before I have to hit the road. Before I sleep I like to say thank you to God for everything about a hundred times. I like to remind myself that my body is just a vehicle for my energetic body. Even though my physical body feels broken, my spirit is not. We are all connected. I am a part of the Universe and it wants only good for me. Then I fall asleep and dream about snakes, about being too tired to finish high school for the millionth time (I did finish, why the recurring nightmare at age 39??), and maybe about kissing a boy. Sweet dreams. My boy is gonna be up at half past ass crack again tomorrow.

"Your iPhone is now done syncing".

Hustle and Flow

So here we sit on a Friday night watching DVR'd Clone Wars episodes. Monkey has done nothing but whine since I picked him up from school. He earned a time out in the car for throwing his buddy's backpack around, whining some and raising his voice. Honest, it doesn't happen that often, but when it does I just want someone to put me out of my misery. He had to sit for 6 minutes on the stairs when we got home and think about it. Right. He's thinking about what he's onto next. No remorse. Ants in his pants.

Everyday he expects me to get him a drink, a snack, set up a game or video or whatever craft he's got it in his head to make that day. I'm like Goddamn Mr. French around here. I know! I know! I only have myself to blame. He used to not be able to do these things for himself and I got in the habit. When he finally could I failed to immediately make the appropriate adjustments, and now I am paying paying paying. Shut your mouth, Dr. Phil. I know. Being so exhausted all the time makes it really hard to demand results from him when I know I'm not showing him my own results. That's a big can of worms, and I'll open it later.

I have been telling him for weeks to pick up his toys. I was not kidding when I complained we were just stepping over things. They were spread out everywhere. Stairs. Landing. Doorways. I almost busted my ass in the bathroom slipping on a Lego person. I said he was gonna wake up one day and they would be gone. He laughed. He also said, "I don't clean." GAME ON. So while he was at school the other day I placed everything that was on the floor anywhere in the house in trash bags. I placed the trash bags in the garage. I picked him up from school and waited for the approaching shit storm. Man, I was scared. I am not a heart breaker. I don't have the guts. I also love him very much, and must learn to be a soul crusher when need be. He's got to learn, and I have to love him enough to teach him. Even if it breaks my own heart in the process. Someday he's gonna tower over me. I need to make sure he's straight by then.

We came in and he was like, Wow, you cleaned up. Wait a minute...(finger to lip, scrunched up brow) where is everything? "Mom! Where is everything???" GONE. I warned ya, mister. Then he was silent for a bit. There was no tantrum. I felt the eye of the hurricane passing over me. I said, "You can have one bag of toys back for everyday you keep everything picked up." Then he said, "Look at all the room I have to play. Okay, sounds fair." MY SIX YEAR OLD JUST SAID SOUNDS FAIR. MUST BE DAIN BRAMAGE. "Hey. Wait a minute. Where are the Lego people?" That's when I started to hear the wind howling and everything went dark. GONE, I said. AHHHHHHHHH!!!!!! NOOOOOOOOO!!! I NEEEEEED THEMMMMM!!!!! That's more like it. (Check mate.)

So all night that night he fluctuated between complete anger at the entire world (WHO SAYS PLUTO IS NOT A PLANET! WHAT ARE THEY THINKING!) and being completely nonchalant as if nothing had transpired to rock his little world to the very foundation. Thank goodness for ADD. I did it! Toys still in garage. He has picked up everyday. And I am now saying NO regularly.

This week has been brutal. Neenie had a hard time at work, I've been feverish constantly and so tired I feel as though I have been drugged. There was actually A COPPERHEAD in my mom's office this week. Needless to say, the stress is palpable around here. No one is looking anyone else in the eyes cause we are all just trying to keep moving. KEEP SWIMMING! KEEP SWIMMING! I am quite ashamed to say though that when my mom comes home and I ask her how her day was (and if she has the power to answer me) and then she asks me how my day was I am basically answering the question "Did you get along with yourself today?" Most days my answer is embarrassing. "It was hard today."

Do you know what it is to be bereft of feelings? To have so many feelings that they are all slugging it out for your attention internally until they crescendo into a screaming hysterical anxiety in your brain that no one can hear but you? Then, you are empty because it is the only way to continue until the next wave hits. To feel like you are hanging by a thread even though you ARE vertical and you ARE mobile and you ARE supposedly sane? It's like being hit by lightning. So much electrical charge that it lifts you up, sets you on fire then just shorts everything out including your heart and brain. That's how I feel today. As Elizabeth Wurtzel puts it "More, Now, Again".

Here I am, floating inside my body as if it is a sensory deprivation chamber filled with nothing but dark, silence and salt water. I am alone in here. I am Prometheus having my liver eaten out day after day. I am Sisyphus pushing the boulder up the damn mountain again and again.

I do not like to write when I feel blue. I don't want to come undone in front of you. It feels shameful. I don't like you to see my crazy. It's not that I'm depressed right now though. It's not the blues. I think it feels more like shades of gray. It could be that it rained for weeks and then it was one million degrees out all of a sudden. The solstice? The time? Bad feng shui? My hormones? Lyme reeking havoc with my CNS again? Maybe it's just the haze of the constant fever for weeks on end.

I just pulled up Deepak on Twitter and he posted "Love it the way it is and flow." So here I go. I get the message God. Tomorrow though, could I have a little more funny and a little less introspection? Thanks.

"It's Hard Out Here For A Pimp."