Alter Everything

Resistance is Futile

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It's been a long time since I've watched a Nopalea infomercial.  If you don't know it, it's a product sold on late night television as a "solution" for pain, insomnia, inflammation, and Lyme disease.

They'll give you a free bottle...plus shipping.

I've considered it: especially at four in the morning when I'm pacing the house praying for shut eye.

In the last three hours, I've folded a load of laundry, unloaded the dishwasher, taken an Epsom Salt Bath, and rearranged my herbal tea collection.

It's an odd, unwelcome surge of energy.

This is not "I'm thinking about stuff; I can't sleep" insomnia.
This is "go to sleep, jolt awake 30 minutes later by tiny children yelling Fire! Fire! Fire!" panic/insomnia.

It's completely unnatural.

In the last three days, I've probably slept 10 hours...and that's being generous.  A new protocol could explain last night's fiasco--new herbs/meds/foods can do that.  But the night before, and the night before that?? Complete mystery.

You'd think I'd be used to this by now: the whole up, down, no control over your body thing. This kick, however, feels particularly hard. Sleep's been good to me the last several months (just a "normal" bump here and there).

I was hoping this problem was behind me.

In the world of healing, a lot's happening.

New problems are coming out of the woodwork.
New solutions are being looked at.
Diet/protocol's changing again.

It's a lot like war.  Bugs hide in corners, under rocks, and in trees. Different ones require different strategies. Take out one soldier...there are hundreds more waiting.

But that's only half of the battle.

Squirming, flipping, flopping, fighting..wishing things were different...that's the real enemy.
So, it's off to dust, walk, sauna, eat oatmeal, make the bed, chop vegetables, and recruit some of these guys.

 

As George Carlin once said: If you can beat them, arrange to have them beaten.

Day 236: Herxing

Man, I'd give anything to sleep...ANYTHING to shut my eyes, feel tired, and drift peacefully for 8 or so hours. I feel like I am going crazy, like the bugs are winning, like worms are literally everywhere -- inside of me, crawling in my heart, eating up my bones, burrowing in my brain.

It is an awful, awful, awful feeling.

THIS is how people go insane. It's why talented folks like Sylvia Plath end up with their heads in ovens. I'm sure of it.

I've tried all of my usual tricks: melatonin, tv, computer time, switching beds, bathing, tapping, breathing, aromatherapy, Theanine. Nothing -- and I mean NO THING -- is helping.  The anxiety and paranoia's unbearable. Who am I? A complainer?  A loose cannon?  A psycho on the internet?

Logically, I know.  It's the Lyme. It's the die off. It's a herx (I mean how good can you feel when cysts are bursting in your brain?).  Mentally, it doesn't feel that way.  It feels like my world is crashing...like PMS, a really bad Lifetime movie, my dog died, my boyfriend cheated on me, horrible Scrabble letters, and my house is on fire all rolled into one.

Thursday's doctor's appointment, please get here soon.

Altered Today: Anxiety, Upping my Detox efforts

Day 234: Sleeping and Shuddering

source

It started with my hand, then my arm, now my whole body. Over the course of a month, I've gone from trembling in my sleep to shuddering...almost convulsing. Now, at 4:43 in the morning, 'panicked' best describes how I feel. I don't want to go back to bed.  I have no desire to see what happens next.

Sleep has always been my enemy. As a child, it plagued me with night terrors causing me to scream and violently throw up in my sheets. As an adult, it caused other problems: walking, talking, random insomnia, vivid horrible dreams.  Looking back, it makes me wonder.  Is it possible Lyme has been the culprit all along?

Desperate, I Google "tremors + sleep + Lyme," "convulsing in sleep," and "shuddering in sleep" looking for answers.  The results bring up some familiar conditions: Multiple Sclerosis, Parkinson's disease, Alzheimer's disease, Creutzfeldt-Jakob disease, Chronic Fatigue Syndrome, Fibromyalgia, and yes, not surprisingly, Lyme. 

"Myoclonus" they all point to; it's a symptom, not a sickness. At its most basic level, it's an involuntary contraction of muscles -- the jerk you feel before drifting off to sleep. At an exaggerated level, it's pretty nasty stuff, limiting your ability to talk, walk, eat, and even live. 

For healthy people, mild Myoclonus is normal.  For others, it presents as a result of other things: infection, head or spinal cord injury, stroke, brain tumors, kidney/liver failure, lipid storage disease, chemical/drug poisoning, or damage to the central nervous system. This, unfortunately, is the category I think I fall into.

Anxiously, I read about treatments aimed at reducing symptoms.  'Clonazepam' comes up -- a tranquilizer.  Just the thought of one more drug makes me cringe.  Please tell me this is just a passing phase.

Altered Today: Symptoms, Knowledge, Stuff to Discuss with my Doctor(s)

Day 205: Making Friends with the Moon

4:12 am. Really???? What can I say. Lyme has impeccable timing. It doesn't care that I have lots to do tomorrow today, that people are coming over on Saturday. It wants to be up, up, up. So, it wins...at least temporarily.

Rather than lie in bed and resist, I will trick it and make myself useful.  Sometimes you have to use reverse psychology on Spirochetes (make them think you want to be awake when you really want to sleep and vice-versa).  Once it knows I am being productive, surely it will switch into exhaustion mode. 
For now, I've got plenty to keep me busy:

-paper chains
-research
-medical tests (knocked out one...phew)
-emails
-organizing
-blog post (two things done...even better)
-other awake friends

I've never tried crafting at 3:00 am before, but I'm willing to give it a go. Is that a bad idea?

Altered Today: Productivity, Hours of Operation, What I Do When
I Have Insomnia.

Day 121: S.O.S.

 

Well, the day's not off to a good start. Sleep didn't come easily last night and, when it did, it was filled with horrible/ironic dreams; like being trapped in a Hyperbaric Chamber running out of oxygen (think it's time to stop medical research before bed??).

Anyway, now on top of my normal crappy, sick/achy/flu-like/pain/virusy symptoms,  I feel like I have some strange hangover..which makes the fight I had with my husband this morning even more upsetting. 

It started when the alarm went off, which instantly had me up and worried about the dog.  Hubby was still tired (probably from me keeping him up all night) and I felt exhausted (for obvious reasons).

I rolled over, asked my husband to let the dog out (which he didn't think needed out yet), but obsessive me couldn't relax knowing she was in there so I kept asking.

Me (whiny): Baby, can you let Betsy out? I really need to go back to sleep.
Him (sleepy): She's fine. I'll get her in a 1/2 hour.
Me (insistent): But baby, I can't sleep if I'm worried about her, can you please just let her out? I really need to sleep.
Him (louder): She's fine. I'll do it in a little bit
Me (getting more obsessed): She's not fine. PLEASE...I just need to sleep.
Him (more annoyed now than sleepy):  I need to sleep too. What about me?
Me (now totally upset, awake, sick, and righteous): Hrruuuumph! (insert noise of slamming door here).

It was not a pretty scene; also not one of my finer moments, but this is how it is when you have a life surrounded by illness.  On the one hand, you have me--a sick person--grappling for any moment of reprieve. On the other, you have him--a caregiver--struggling for the same.

They're different sides of the same boat: both sinking, both overloaded, and both desperately in need of rescue.  I love you, baby. I'm sorry I slammed the door this morning and that I didn't trust you to take care of things later.  I am also sorry you're feeling tired and overwhelmed. We'll get through this.

Altered Today: Seeing life from my husband's point of view, formally apologizing, going back to bed.

Day 77: A Day in the Life of a Mystery Illness

NOTE: The following post was written earlier this morning during a flare up. I went back to bed and feel much better now.  If you called or were concerned, thank you.  Flares can last for as little as 2 minutes or as long as two days.  You never know and that's one of the sucky things about Lyme and other autoimmune diseases. 

As Denise Lang wrote in her book Coping with Lyme Disease, "The experience of Lyme is such that a patient will have unusual symptoms to the point of being disbelieved by doctors and family and finally disbelieving him - or herself.  The disease follows a waxing and waning course.  You can't predict how you're going to feel from one symptom to the next." 

Although we don't know for sure that I have Lyme yet, my symptoms certainly fit the bill.  It's a crazy disease.  One day your chasing down the cause of rashes, the next your chasing down stomach or arthritis pain. My hope in writing this is not for pity, but to shed some light and understanding. If it helps just one person be more sympathetic or figure out what's bothering them, it's worth it to me.  Thanks for reading.

It's 6:41am and my mind is going crazy.  My left foot aches, both hands hurt, my right hip burns, and it feels like someone applied Vick's VapoRub to the inside of my chest and stomach.  I'd give anything to rest, but I'm wide awake - jacked up with energy - even though I barely slept for two hours. 

Since 2:00am, I've stared at the clock in the bedroom. The pain is unbearable...like the pain that makes you call 9-1-1 in a fancy restaurant.  It won't subside, so I grab my pillow, feel around in the dark for some socks, find my computer, and hunker down in hopes of a quick passing.

Desperate for relief, I limp to the front bathroom.  Hot water + epsom salt provide some comfort, but it's still pretty awful.  The pain and chill migrates.  My face tingles. My forearms turn cold. My neck stiffens.  My left elbow feels broken. My side feels like it's being stabbed with a dull poker.

To distract myself, I look up classes at the YMCA.  Yoga, Tai Chi, or light stretching sound good, but I can't bring myself to get dressed or put on tennis shoes. Restless, I turn on the television.  Sadly, I watch Vicki Lawrence promote a George Foreman knockoff grill.  Now muted, the Appliance Direct lady (wearing her traditional green plaid outfit) tries to sell me a dryer.

I no longer feel positive or accepting. My fingers ache, my jaw hurts, and honestly, if I had them, I would take some heavy duty narcotics.

In pain and miserable, I finally start to feel sleepy. So, I check my spreadsheet, take my prescribed herbs, and shuffle off to bed.  On my way there, I worry about: finding receipts for my accountant, mailing a package, scheduling lab work, canceling my phone service, how my husband's doing, and how we're going to stay afloat in the upcoming weeks.

"I can't deal with that now," I think before I publish this post. One minute at time.  One minute at a time.

Altered Today: Sharing Myself, Understanding Chronic Illness and What It's Like to Be Sick

Day 69: Glass Half-Full

 

"I feel so good.  I can't believe it." 

That's what I said yesterday in the car with my husband.  After struggling for weeks, I finally slept two nights in a row and the difference in my mood, pain, and mental clarity was staggering.

"Maybe I'm not sick at all," I rambled as we drove down I-4. "Maybe the insomnia just causes me to feel bad and not the other way around."  Laughing, we joked about how watching the Superbowl cured me and how I'm a Steeler miracle.  Inside, I obsessed about what made the difference. Was it the Melatonin? Was it the Milk and Nutmeg?

It's been a fabulous two-days.  I woke up Sunday feeling amazingly refreshed.  I got up early, met a friend for a bagel and later even managed to watch the Superbowl (without fatigue and without napping).  It was the most productive I'd been since October. 

I woke up Monday feeling almost as good: Alert, Alive, and Vital.  I climbed several flights of stairs, relaxed at a Disney Resort , even ate at Cracker Barrel, and--for a while--completely forgot about doctors, food journals, and symptoms.

Now? I'm up with pain again after only a 1/2 hour in bed (melatonin and milk be damned). 

I am disheartened, but hopeful.  At least now I know...I'm still in there somewhere. Fingers crossed, it's just a temporary setback.  Fingers, toes, eyes, and elbows crossed, I'll have some kind of answer next Tuesday.

Altered Today: Hope, Optimism, Attitude 

Day 65: A Prescription for Sleep

We've all heard it at one point in our lives: "Drink some warm milk.  It will help you relax."  Although it sounds cliche, that's exactly the advice my doctor's office gave today.  That, with a few minor adjustments.

Going on nearly two weeks with virtually no sleep, I am at my wits end (and also confused). I'm exhausted, but wired. Lethargic, but restless (just one more thing to add to my weird list of symptoms).

I've tried lots of stuff to solve the problem:

-Late night Epsom salt baths
-No caffeine
-No naps
-Forcing myself up and out of bed at regular hours
-Reading
-No computer/tv
-No late meals
-New pajamas
-Vitamins earlier in the day
-Switching rooms
-Ear plugs
-Massage
-More carbs in my diet
-Music
-Eliminating carrageenan
-OTC drugs

Finally, in desperation, I called the doctor's office.

After asking what specific symptoms I had and how I've been handling the problem, they made these recommendations:

-1 cup of hot milk with 1/2 teaspoon grated Nutmeg 1/2 hour before bed (milk must be whole and Nutmeg must be fresh)
-1mg Melatonin 1/2 hour before bed.  If not helping after 1/2 hour, take two.  If not helping after another 1/2 hour, take three (all the way up to 5)

Note of caution: Don't ever take Melatonin during the day as it disrupts Circadian rhythms which increases your risk of cancer and other bad stuff.

Apparently, protein makes a great sleep-inducing bedtime snack and Nutmeg is a natural sedative (who knew?!?!).  Honestly, I would drink cat pee if I thought it would make a difference (and wouldn't screw up lab results...lol).  In the meantime, I am altering my bedtime routine. Will let you know if it was worth the trip to Whole Foods.

Altered Today: Asking for help, bedtime routine, hopefully insomnia

PS Don't take my doctor's word for it (or mine).  If you're having sleep trouble, consult an expert.

Day 64: If I Were You

 

Did you ever read your old boyfriend's Facebook wall or browse through a friend's photo feed in the middle of the night? Call it nostalgia. Call it crazy.  But I shouldn't have done it.  Now I'm singing the happily never after, everyone's life is better than mine, 4:00am, bitter, resentful blues.

One ex is a model citizen who attends church regularly, helps the homeless, and takes care of his beautiful wife and 5 children.  Another old friend has a gorgeous house, has transformed into a supermodel, and is now pregnant with a baby.  Other exes (friends or otherwise) have exciting jobs, thousands of friends, or are saving the world.  Me?  I'm just trying to get three hours of shut-eye, find two matching socks, get my Facebook followers up to 20, and make it 'til February 14th...which is my next scheduled doctor's appointment.

Now, don't get me wrong.  I'm happy everyone is leading such a wonderful, super-terrific, amazingly powerful, creative, fulfilling life (insert little bits of sarcasm here).  Still, being honest, I can't help but wonder.  When will I be on top of the world again?

Seems like yesterday I would laugh when women I coached would say they were jealous of this or envious of that.  I can't remember what brilliant advice I gave.  I probably had them make them make a list of what they were thankful for or had them journal 20 reasons why they might be the object of someone's green-eyed affection.

So...in an effort to alter my crappy, non-productive, nasty, feeling sorry for myself, hate my life, negative-nelly frame of mind, I am taking my own counsel (When I am finished, I will let you know if I owe some people a refund).

20 REASONS YOU MIGHT WANT TO BE ME
by Kathy Tagudin

1) I have a very sweet, LOYAL husband who always supports me.  He would never lie to me or intentionally hurt me.  He even understands when I look up old boyfriends on Facebook ("Do you need to call them? he'll ask).

2) I have enough money in the bank that I can afford not to work and take care of my health.

3) Both of my parents are alive and kickin'. We have a great relationship and a lot of love.

4) I have a fantastic art studio that is a special space designated just for me.

5) I am not in Egypt.

6) I have plenty of food in the fridge and plenty of places to go if I run out.

7)

My dog, Betsy.  Need I say more?

8) I know at least five six people I can call right now if I need a ride to the airport or have an emergency (please don't make me name them).

9) I live in a country where I can worship freely.

10) I am very creative and can think fast on my feet.  I am never at a loss for a good idea.

11) I've got no strings so I can wander freely...without vomit on my shirt or Cheerios in my hair.

12) Both of my cars are paid for, run, and are full of gas.

13)  I am not living paycheck to paycheck.

14) I have medical insurance.

15) I graduated from college.

16) I can sing and write poetry.

17) I have very, very, very cute thumbs.

18) I have a great bedroom with a very comfortable mattress.

19) I am in Florida...not stuck in snowstorms.

20)  I can laugh, smile, cry, talk, walk, run, breathe, eat, smell, see, hear, blink, love, hate, feel, think.

Ok.  All better now.  You?

Altered Today: Taking my own Advice, Gratitude, Poopy Attitude.

Day 54: Neurotoxic...what? If you have weird symptoms and can't sleep, you should read this.

Since being sick, I journal daily. I note what I eat, how I'm sleeping, any new aches and pains, and any other number of odd things that come up that require attention.  If you read my post the other day, you might remember I haven't been sleeping well lately.  In fact, since last Monday, I've only slept three nights: one without disturbance, the other two with limited interruption.  The other four nights I was awake completely wired.

At first, I thought it must be my newly prescribed vitamins..  "Boy, these herbs  really make me edgy" I told my husband.  Then, having still taken the vitamins, I slept soundly the next night.  "That's odd," I thought.  "Wonder what else it could be?"

Today, I think I found my answer.  As I scoured through my food journal, I noticed an interesting pattern.  EVERY night I was wide awake, I ate either a chocolate pudding or a chocolate yogurt bar late in the evening. "Aha, chocolate," I said to myself...thinking I'd solved it. However, I had cocoa on other nights with no reaction. 

Stumped again, I went back to my food journal.  The items in question both contained probiotics.....a healthy choice.  "Wonder what else is in there?" I thought as I  looked up the ingredients.  The results floored me.

Introducing carrageenan-- a seemingly harmless vegan alternative to gelatin that's made from red seaweed.  It's found in lots of stuff including soy milk, pancake syrup, ice cream, toothpaste, and diet sodas.  It's also been noted as a Reaction Triggering Neuro Toxic Chemical.

According to the RTNC411 website, 1 in 4 people are sensitive to chemicals like carrageenan, but most don't even know it. 

The website also reports RTNCs can cause serious reactions including:

• Headaches, migraines, insomnia, coughing, chronic fatigue, aggression, hyperactivity, anxiety, and depression.

• Asthma attacks, obesity, attention deficit disorder (ADD), tinnitus, restless leg syndrome (RLS), and neurodegenerative diseases such as Amyotrophic Lateral Sclerosis (ALS).

The ironic thing?  By eating these products I thought I was doing something GOOD for my health. I mean don't they SEEM healthy???

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My conclusion?  Although the verdict is still out whether these products have been truly been contributing to my insomnia or health concerns, I've found enough information to make me permanently stop buying them.

Altered Today: Buying ANYTHING Without Reading the Label, Thinking People Who Talk About Food Safety and Toxic Overload are Nut Jobs

Sources:

http://www.notmilk.com/carageenan.html
http://www.rtnc411.org/rtnchome.html
http://www.scdrecipe.com/blog/archive/2010/05/03/illegal-list-carrageenan/
http://en.wikipedia.org/wiki/Carrageenan
http://www.drweil.com/drw/u/id/QAA44833