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?"

Symptoms Shmimtoms

I've created my own list of symptoms of Lyme Disease just in case you were wondering if you are a parasitic host.

You might have lyme disease if:

...The dining room chandelier has 14 lights but only 6 of them actually have working bulbs.

...You find yourself saying things like "But I just cleaned the toilet last month. How is there mold growing in there already?"

...When you ask someone to hand you a granola bar you say "Can you hand me a...one of those...ummm...rectangle thingees in a shiny silver package with that Quaker guy on the front? You know, you eat them."

...Your neighbors hate you because you are a complete season behind with your outdoor decorations.

...The neighbors keep suggesting home improvements about the roof and the yard, and then they offer to help. "Oh, it's no trouble."

...Everything you mail has to be overnighted because it's already late.

...You're drinking out of bowls because all the cups are on the passenger side floor of your car.

...All of your doctors are old with white hair and glasses, and they all insist your fine. "That'll be $250.00 please."

...Undergarments are only worn if you have to leave the house.

...Lifting your arms above your head, looking behind or under things results in severe pain somewhere.

...All of your voice mails start with "I am trying to contact ****. If you are not ****, then please hang up."

...Sunlight makes you cry.

...Vacation is just way too complicated.

...Your son claims to have discovered what's wrong with you, and dubs it "the sleepiness".

...Your only meaningful friendships are Starbuck and Apollo, Denny and Alan, Jack and Kate or George and Izzy.

...You own more pajamas than any other item of clothing. You wear them outside because "they're really just plaid pants, right? Who's gonna notice?"

...you have no idea what time it is because every room has a clock with a different time.

...You never ever rotate the food a quarter turn half way through microwaving. That's just too much bullshit to go through for an enchilada.

Unsolicited Advice!:
Cesar says "Exercise, Discipline, then Affection." I am pretty sure this works on kids too. Let me know if your kid enjoys being poked in the neck as much as mine. The dog thinks I'm playing. The kid knows I mean business.

Tip Your Waitstaff!

We have no clean cups, and I just caught the dog eating the dictionary. Happy Monday! So what though, I have spell check! I barely slept last night so I enjoyed a 3 hour nappy-nap this morning. Now when I pick Monkey up from school I will have the energy and patience to listen to the incessant talking and singing (Star Wars theme, fucking over and over) and not rip his throat out with my teeth. We'll be buddies as usual, and I will serve as his waitress, maid and posse. I'm wearing the same clothes I wore yesterday, and as a matter of fact I slept in them. It's all about time management.

I will tell you more later about how I think the Lyme progressed from my childhood on. For right now though I'll just start with after Monkey was born. That first year was hellish. I bought a house, had two car wrecks within three weeks of each other, I quit my corporate job, started my own business, MBD moved to Korea and after about 6 months Monkey was sick alot. The stress was awful, and I was down to about 89 pounds. I was dizzy and exhausted and thought I was dying all the time. Really, really believed I was dying. I think the pregnancy was just too tough on me and my body just couldn't coexist with the lyme anymore. I looked okay though, and no tests revealed anything wrong. I knew it wasn't just depression, although I was depressed from the fear and uncertainty and the thinking-I'm-dying all the time. Over the next few years I was diagnosed with dysautonomia, MVP, menieres disease, lack of hormones, and sleep apnea. I took meds, but I still felt like crap all the time though. I was so exhausted.

Over the course of this past six years I have not been living, just surviving. Just trying to make it from morning to night every day, and get Monkey and me better. Some days I would have just offed myself, but the garage was too messy and I couldn't pull the car in to gas myself. I wouldn't do that to Monkey anyway. I'm in it for the long haul. (Unless of course there is some sort of accident resulting in brain injury, in which case I'm telling you now just pull the plug.) I have learned to become invisible. The anxiety was so bad I sequestered myself in the house until I was agoraphobic. I quit wearing make-up, jewelry, and a bra cause it hurt so bad. I only did the things I had to do for Monkey. I did play dates and took him to fun events. It was miserable for me though because I couldn't enjoy anything. I couldn't hold a conversation with other mothers without bursting into tears. Light hurt my eyes. Sound hurt my ears. Heat and humidity made the menieres flare up. My legs would barely carry me up the stairs sometimes, and with Monkey I am constantly being called to climb the stairs. All my limbs were tingling, feet were like blocks of ice and I was forgetting the name of things and words.

I know this sounds like gloom and doom, and yes it was...then. It's much better now. I feel like I'm halfway there to better. If you read anything lyme sufferers have written via the internet you'll see that people spend thousands of dollars trying to find out what is wrong with them. There's alot of politics involved which I'll be sure to mention later. I'm going to add some of my past diary entries so you can see what it was like in my head before I knew.

Full Disclosure:

" December 23, 2007

It's clear to me that the zoloft is completely out of my system. It's been almost 5 months since I last took it. It seems to me that the only difference it was making was preventing me from bursting into tears constantly. I'm up and down everyday. Feeling crazy and having anxiety attacks. I'm also feeling very irritable. I'm so angry at Mom. I just seethe hate most of the time towards her. I feel like I've been a bit short with Monkey too, but he could try even a saint's patience after spending all day with them. It's okay about him though...

I feel like the house is pressing in on me. There is so much stuff in it. It is near impossible to keep clean. And, I have no room. My room is filled with piles, and I can't get my stuff put away or figure out where to put it.

I am so tired. So fatigued. So dirty. No energy. Unhappy. Sad. I don't want to be depressed or sick. I wish I could take something for the energy, but there is nothing to take! This is probably the closest I have felt to suicidal in a really long time - three years, maybe? I hate it. Tired. Feeling uncomfortable in my body. Yuk. Showers don't make me feel better. I hope this passes.

You know, I can't even remember what I was going to say...I can't tell if I'm hungry or tired or what. I'm shot. Legs hurt -left ankle, knee and hip -all my back -my neck. I can not sit or lay comfortably. I've said it a thousand times...I can't live like this. No one can help me. Not sure what to do. Just managing to take care of Monkey. It's all I can handle. He's doing so well.

Wit's End! I feel as though I have ruined my mother's life. I don't feel like wrapping presents."

"January 6, 2008

Am feeling soooo sick. Temp up and down all day. My neck hurts as though I have food poisoning...which I don't. It feels horrible moving around, but I don't feel like it's the flu. Strange. Want to sleep, but can't get comfortable because I'm so achy.

Talked to KT. She suggested I look into Lyme as some people at her church have it, and the symptoms seem to match up. Fucking insanity is what this is. Feel/hope that that may be the answer. Scared that it can pass to the fetus. What if Monkey became sick because I have always been sick? KT said to not even think about that right now. So I will concentrate on the sick that I am and the sick that he already is, and will not borrow trouble.

If I did...DO...have lyme would it be wrong for me to be happy for feeling vindicated? Not crazy. Not lazy. I just want to have something I can point to, something with a name I can fight! I hate being invisibly sick. I will call and fill out forms or do whatever to get the ball rolling. I want so desperately to be well! I want a fair shot at life. I want quality so badly. I feel selfish, but I am alive and I deserve to enjoy it, right? Please, no more sick."

"June 4, 2008

So! I have solved the 'What is the problem' problem. It is a huge relief. I know I have Lyme Disease. As to which infections or co-infections I have, I just don't know. I could've gotten tested in April, but there was no way I could travel or afford $4000.00 . Now I am taking the therapeutic challenge route. I have tried the salt/vitamin C protocol which helped. I was never able to get the dosage up high enough though. I have started to have some good days though. Really. I have managed to get the house and garage totally cleaned. Monkey has had friends over for play dates! I painted my room, for God's sake.

Things have really started coming together. After Monkey's sensory therapy he has slept through the night every single night and has pooped everyday. No more enemas! This in and of itself has taken a load off of me.

Right now I am trying the MMS protocol. It is sodium chloride, and it kills everything bad. I know that my toxic load has been reduced. I'm having a shit day though. My PMS/period is so awful...yada yada yada.

I know it's going to take a year or more to lower my lyme load and feel better. It's different aches and pains everyday as I have the die-off. I'm hoping my face will return to it's normal color. It's awful. The melasma is so ugly I can't look anyone in the face. I know there is more that I could do to feel better. Better detoxification and exercise and diet. As I feel better I am able to do more. I hope I can do more for Monkey too. Reduced stress helps so much. Mom has layed off me for months, and that has really helped. She is so tired though she can't do anything. She works so hard. She is the only one of us working, and we need the money. I wish I could save all of us. I HAVE to get better to save us.

I'm afraid the lyme is dormant...or whatever...in Monkey right now, and will start to emerge when he has detoxified. That's the running theme in the things I have read. He's chelating today, and it takes such a toll...on all of us. He gets so forgetful and tantrum-y. We have to get it out though and he improves every single time! How often and how long will this take I wonder.

Monkey had a little friend over today. He couldn't stop hugging. MLF was a little put off. How sad. Everything about this is sad. I just want to be hopeful. It's a real trick though when I feel like I've been beaten with a bag of hammers.

How did I not know Snuffaluffagus was an anteater. I've spent my whole life thinking he was an elephant. Will the wonders never cease?

Going to PA next week. I can't be excited because it's so stressful with the drive and packing. Get to see Dad's new house. I must remain calm and save all my energy for healing myself. Me in a bubble. Me invisible."

I haven't mentioned God very much in those entries, but believe me He is very much in my mind and heart constantly. I believe I am plugged into the Universe. It grants miracles and wishes to me every day.

Monkey has started experimenting with similes. Here's two new ones:

...as easy as a baby

...funny as ten clowns

Unsolicited Advice!:

At every opportunity endeavor to be the best possible version of yourself.