Alter Everything

The Toe In The Day: Mark Nepo's Take On Pain & Chronic Illness

Source

Imagine, you're outside walking down the sidewalk. 
The sun is shining. 
The birds are singing. 
The air is fresh. 
And YOU are completely aware life is a gift and a miracle to be treasured.

Then, suddenly, without warning, you stub your toe
...not a small stub either. 
A BIG stub...
like your toe is broken.

You no longer appreciate the sun
or the breeze
or the beauty.
You know they're there,
but the toe gets all of your attention (as it should).
But, for how long?
That's the question.

That is my summation of how Mark Nepo describes life with chronic pain/illness.  As a cancer survivor, Mark reflects on his journey in The Book of Awakening which was recently featured on Oprah's Super Soul Sunday. He also recently suffered from a mysterious stomach illness that had him reeling in agony from even the smallest bite of food.
 
According to Mark:

Each of us are ancient flutes made out bones.
Our holes, hollowed out by pain, create beautiful music.
Still, being hollowed out is never fun in the process.

"Were you afraid to die?" asked Oprah.
"I was afraid to live." replied Mark.
 
Fear is all consuming with chronic illness...he reminds.

We're afraid of the past...going back to the hospital, being bedridden again, re-visiting old symptoms.
We're afraid of the present...having an "attack," not being able to handle an "attack," being misunderstood, being judged, doing too much, not doing enough.
We're afraid of the future...What's going to happen to us? Is there an end to the suffering? Will life ever be somewhat normal again?
 
Yes. That sums it up exactly.

How do you overcome/alter that experience?

I'll let Mark speak for himself on that one (well worth the few minutes to watch). In the meantime, I hope this helps your pain becomes a little more "right-sized."

I know it did mine.

XOXOXO

Days 393-394: The World May Never Know

Question: "How many licks does it take to get to the Tootsie Roll center of a Tootsie Pop?"
Answer: It depends who you're asking.

If you ask me, three sounds like a reasonable number (I chomp, not lick). To others, 10 is far more likely (or conservative). Scientific experiments range from 144-411.

It's funny: defining the indefinable. While we like to think in absolutes, there are always other factors "clouding" the outcome: preferences, sample/data contamination, time, environment, knowledge (to name a few).

Will a fresh, NEW pop break down more quickly that an old one?
Good question.
What if a person has a really large, wet, acidic tongue?
Does that matter?
How big is the pop?
Miniature?  Jumbo?  Is that taken into consideration?
What's the temperature of your mouth? Is it full of other things?
Can't melt candy when your mouth's full of meatloaf.
Is the wrapper off?
LOL...

While it may seem like a strange analogy, that's the dilemma faced by me and numerous other Lyme/chronically ill patients.

We all have the same question:
What will it take to get well?

 The turtle has one answer:





The owl another:




The fox another:

The cow another:




The actual answer depends on you.

Day 364: More Stuff You Don't Want To Know About My Bowel Movements

Ok. Technically, I should have posted this yesterday. Can you tell this day to day thing is getting harder and harder to keep up with?  I have this cat on my lap, a daisy growing out of my head, blah, blah, blah.

Ohhh...and I crapped a whole pile of worms--I am assuming from the sodium phosphate in my colonoscopy prep.

No wonder I'm feeling better (relatively speaking). As my friend Alyson says, I must "have those things lodged in my shoulder." Lol.

She's probably right.
Read more about the world of parasite infestation here.

According to The Light Party (whoever they are):

Sodium Phosphate (abbrev. Nat Phos.)...is "the remedy of choice for intestinal worms and other parasites."

SERIOUSLY...wish I would known THAT before taking horse meds and my last internet purchase.
Yes. That's sarcasm.

I've heard of the Salt C Protocal and the modified Salt C Protocol--both the positive and negatives: electrolyte imbalance, heart valve damage, blood pressure problems, etc.

Aaaargh...decisions, decisions.

Altered Today: Focus of treatment. GU stop. Parasite/Candida/Metal dump start.

PS Ah. Ha.  Look what the cat just drug in...

With a name like Worms-B-Gone, how could you go wrong???

Day 363: Pssst....Hey you. Yes, YOU! Go See the Muppets!!!

If you're sick....
If you're cranky....
If you're nostalgic...
If you just like to smile...

If you've given up completely...

GO!!!!

To refresh your memory...

 

 

You could be here...



Altered Today: Joy

Day 350: A Tale Of Three UNDAs

In the world of Chinese Medicine, if you want to detox, try an UNDA. Or, in some cases, three or four. Then, pray for progress.

UNDA numbers, a homeopathically prepared low-dose of plants and minerals, drain impurities on a cellular level.  Each number targets a different organ or organs.  Some stimulate.  Some calm. All encourage healing--particularly in stressed, overworked, chronically ill bodies.

Finding your perfect combination of UNDAs is a bit like being Goldilocks; testing vial after vial, until you find the right one.  Through a process called muscle testing, you hold small vials of compound and "resist" as the practitioner presses against your outstrectched hand or arm.

-UNDAs that strengthen you (think Popeye and spinach) are considered compatible.
-UNDAs that weaken you (think Superman and Kryptonite) get eliminated. 

From there, you're prescribed a specific formulation...usually a combination of three or four numbers.

My UNDAs--24, 9, 1001--were initially greeted with a rousing round of skepticism.

Me (teasing my Acupuncturist):  Really? We're going to do muscle testing? That's so WOO-WOO.

In truth, other 'out there' things like ART testing have proven to be accurate.  With nothing to lose, I decided to give it a go.

Curiously, I saddled up to the bar, read the directions, and prepared for my first dose--10 drops on the tongue, hold 30 seconds, wait, then start again.

How do you get it on your tongue? I wondered.

Finally, I found my rhythm...drops on a spoon, spoon in my mouth, hold, bottle back in the package, repeat with the next number.

(FYI: Use plastic spoons here; metal ones may be reactive).

Within in 5 minutes, I sat astonished.

• My head cracked open like a coconut
• Water poured from my sinuses down my throat
• Chunks of substance came out in my stool and urine
• Cold chills took over my body
• By 4:00pm, sleep (and crazy dreams) were my friend

That was yesterday. Today, I am mentally clearer than I have been in months...
well worth the $75.

Hopefully, this will relieve my frozen shoulder, neck, and arm pain...problems I've been told are caused by trapped toxins--particularly in the liver. 

Finger's crossed, chicken bone, knock on wood, no whammies...
(insert other outrageous superstitious quotes here)

Altered Today: Protocols, Detox Methods

Day 331: Med Safety 101

If you're anything like me, you probably have a closet full of prescriptions.  My GU treatment alone, contains 16+ Chinese herbs. There are yeast treatments, vitamins, pain medications, antibiotics, antivirals, sleeping medications, and more...prescribed by four plus doctors.

I rarely take pain pills. Although I could, I don't like how they make me feel.  I also prefer to stick to homeopathic stuff. That said, when my left arm had me writhing in tears last night, the Flexiril prescription hanging on my fridge seemed like a God send.

At 2:00 in the morning, I stumbled into Walgreens: no bra, uncombed hair, plaid pajama bottoms, crying, holding my arm.

The Pharmacist:  You wanna wait for it?

Me: Do you get a lot of people coming in the middle of the night wearing pajamas in tears who DON'T want to wait for it?

Him: It'll be right out.

For 10-minutes, I tried to distract myself...

• Looking at magazines.
• Checking out candy I no longer eat.
• Replacing my pink, girly-girl earplugs.
• Impulse buying an ugly bath mat (it felt really cushy and luxurious in the moment).

I was never so happy to pay $9.95 for anything in my life.  (No pain AND a bargain?  Count me in).
Thanks, Walgreen's Prescription Club!!

Me (grabbing the bag before leaving):  Do you know if these interact with any  herbs?

Pharmacist:  Unfortunately, we don't have a lot of information on that.  With the major ones like St. John's Wort or Melatonin, maybe, but not other stuff.

I decided to risk it.

Before doing so, however, I did cross-check this script with others in my stockpile.  The results surprised me.

Tramadol + Flexeril = danger
Flexeril + aspirin = danger
Flexeril + certain antibiotics or sleeping aids = danger
Flexeril + Magnesium = danger

All stuff currently at my disposal (heck, I was just taking baby aspirin due to the clot issue).

Bottom line? Cross check your meds!!

You might think your pharmacist will warn you (mine didn't).

You might think the stuff you took yesterday will be out of your system (it might not be). 

You might think your doctor wouldn't prescribe you things that don't go together (they do).

To check for prescription drug interactions, go here.
For some common herb interactions, go here and here.

PS While you're at it, check your parent's stash too. I found two dangerous combo's in my Dad's pile...one of which may cause high blood pressure...something he struggles with.

Altered Today: Med Safety

Day 327-328: Heparin IV/UVBI Complications And A Bunch Of Stuff You Never Want to Hear With A Needle In Your Arm

Nurse: CRAP!

Me: What's wrong?

Nurse:  There's a clot in your line.

The next five minutes are a blur.

Snoogs calling for help.
Santa Maria rushing in.
My Favorite IV Nurse jumping into action.

Favorite IV Nurse (examining the Tupperware-like syringe filled with sticky, magenta snot):  Tell me what happened.  You did the Heparin, right? Were you having trouble pushing? What happened before that?

Me (interceding, trying to explain what went down):  We used Lidocaine. We also used a vasodilator. When we put the Heparin in, something felt wrong. I became hot/flushed--like I was going into shock and peeing my pants. Later, I got a metallic taste in my mouth. We thought the Hep went in too fast or it was a reaction to the topical stuff...

Worried, we stare at the three-foot plastic tube running from the syringe to the needle to my arm.  It's filled with coagulated blood--blood that before we stopped was being PUSHED back into my veins (a part of my twice weekly UVBI treatment).

Now, the big question...
Did the clotted blood come from me or go into me?
Neither seems like a good scenario.

Favorite IV Nurse: I don't think it's YOU. I'm 99.9% sure this problem occurred in the line. Based on what you're telling me, I don't think you were given Heparin. I think you were given Magnesium. That's the only thing I know that would cause flushing like that...

Cliff note: Heparin is a blood thinner administered during UVBI to prevent clotting. 

More confusion.

Snoogs (looking horrified): I'm sure I used Heparin. I remember looking at the bottle.

Me (trying to understand the impact):  If we didn't, then what?

For a few minutes, I'm given the rundown/once over: How magnesium won't hurt me...how this amount is less than I would have received in an IV nutritional...how I should stay for a while...just to be safe.

In between, there are thermometers, blood pressure cuffs, pulse checks, and stethoscopes.

A little ways in, the coast seems clear. Then, as I get up to go to the bathroom, I notice it: a stabbing pain in my right thigh.

Favorite IV Nurse: How you doing???

Me (getting scared):  I'm not sure. I have this really weird pain in my leg.

Snoogs (forgetting I can hear her): CRAP! Do you think she threw a clot???

Immediately, the doctor is called. While we wait, I think of every clot horror story I've ever known:  My former boss who died when a clot went to his brain...A previous customer who got blood clots in his legs after being on an airplane...A girl I used to work with at Pizza Hut in 1988...

Favorite Doc:  What's going on????

Me (trying to stay calm):  I don't know.  You tell me.

He watches me walk. Asks what I've eaten. Thumps my back/hips. Listens to my heart. Asks about the pain in my leg.

Doc:  I don't think it's a clot. If it was a clot, it would travel from the IV site (my arm) to your heart or your brain.

Me:  This leg pain's not normal.  If there was a problem, how would I know?

Doc:  You would know.

Me (half joking/half not):  Sure...if I died from an embolism. Other than that, what should I look for?

He rattles off a bunch of stuff: swelling, chest pain, headache, cold hands/feet, area that's hot to the touch. For a more complete list of things, go here.

Snoogs:  Should we give her Heparin?

Doc:  You can take baby aspirin...it shouldn't be a problem though. Clots dissolve naturally in the body.

The tension was palpable.

As I leave, I try to comfort Snoogs...who looked sadly like a frightened four-year old.

Me (not wanting her to blame herself if I die in my sleep):  We don't know what caused this...if you mixed something up or something else. Either way, it's ok (making her look me in the eye).  Stuff happens.

It's been a scary 24-hours: a parade of friends babysitters, telling Angel (who's in DC) what to do in case of emergency, debates over whether to go to my general doc or the ER, stopping herbs, starting baby aspirin, watching for symptoms, researching the impact of injecting clotted blood into the body.

Without a CT scan, doppler/ultrasound, or EKG, we won't know if there's a problem...until it’s a problem.

Seriously.

My life's ridiculous.



XOXO

Altered Today: Worries, Potential New Lyme-Related Health Complications

Day 318: Ionic Foot Bath, Help or Hoax?

What's orange, gross, and cost $35? My foot bath..of course, but it didn't start out that way.  In truth, I wasn't expecting much from the process...just some R & R time with my girlfriend. Still, give me the opportunity to detox or feel better and I'm in. Happily, I set my alarm for 9:30, got dressed, and drove across town.

Three tolls later, there I am--feet first in a plastic tub full of warm water. Inside are sea salts and some electric generator looking unit. To my right, what looks like a dying car battery. For five LONG minutes, the technician gives what I can only assume is her standard foot detox spiel...

The motor makes a current.
Blah, blah, blah.
It pulls out toxins.
Blah, blah, blah.
It's not regulated by the FDA.
Blah, blah, blah.
It doesn't cause a healing crisis.

I interrupt to ask if it does anything to address heavy metals.

The short answer? She can't say that. The long answer?  "A man with parasites expelled worms through his feet once. His wife did too. They were on vacation. It was the craziest thing. Detox baths are good for you." Not exactly answering the question, but interesting.

The process doesn't hurt. It's even relaxing. For a while, my feet sting and go numb, but that happens in my La-Z-Boy...none the less in a tub full of hot liquid. By the end, my water's thick with black flecks....a sign I'm expelling toxins--I'm told.  Except for a headache (which is probably unrelated), I feel no different.

Detox foot bath, before and after.

Update: I did sleep like a rock last night. Don't know if it was because of this or something else, but, if this had anything to do with it, it was $35 well spent.

Altered Today: Toxic Sludge (hopefully), Girl Time.

PS To learn how Ionic Foot Baths work, go here. To see why people think they are a scam, go here.

Note for the scam video people. Next time, run the unit without the carrot. After all, carrots probably have toxins...don't you think???

Day 307: Methylation Map

Source

Methyl--what?  That's me trying to learn more about my newest challenge...a double MTHFR A1298C gene mutation. Several people I respect SWEAR fixing my methylation pathways is the key to healing.  So I am reading. Reading. Reading. Reading. Reading. Reading.

Page one of a link I receive opens to the chart above...holy camoli.

Me (to my friend):  WOW!  That is A LOT of information. My eyes are already bugging out my head. I think from the chart.
My Friend (God Bless her researching heart): Skip the chart, go directly to the A1289C information, grasp it and then read from the beginning - it will be so much easier.

Not one to completely follow directions, I go to the instructed page, look at the first sentence, then skim down...trying to get to the good stuff. All I see?  Another list of foods to avoid.

SERIOUSLY???

I already have three different diet protocols.

This is going to take a some time to digest.

Altered Today: Free time

Day 290: Obsessing Over Candida

It's 6:24. I'm in my chair, ready to write a blog post. The only problem? I'm preoccupied. I can't think about cats or cuddling or Lyme or life. All I can think about is how my tongue feels like it's going to fall off. Yes...it's true. I am battling a horrific case of oral thrush (otherwise known as Candidiasis).

Now, if you've never had oral thrush, let me just say this:  It's not fun. Your mouth feels like it's on fire.  Your breath stinks. Eating is painful. And, it's a bear to get rid of.

How do I know?

-2 Rounds of Diflucan
-Umpteen courses of Nystatin
-Endless rounds of Citrus Seed Extract
-Weeks of oil pulling
-Several shots of Calendula Succus
-Salt water rinses, tongue scrapers, baking soda...

I still got it.  I'm so discouraged, I'm even eating french fries with cheese (not currently, but I did last night). What's the point? Nothing helps anyway...(at least that's what I said to myself).

FYI: Please no lectures on how I really need to eat a protein filled, no carb, no dairy, no sugar, no dairy diet. I know this.  Just having/promoting a momentary lapse in judgement.

Desperate, I start looking for new home remedies for thrush...things I haven't tried yet...stuff that won't interact with with my new Chinese Herbal GU concoction...things that won't cause sleeping sickness, or death, or hives, or stomach cancer.

Option #1--Gentian Violet. Often a pick for nursing mothers, it's a standard treatment for infants with oral thrush. Only drawbacks?  Makes your mouth purple (for days) and supposedly contains Mercury (don't really need more heavy metals, do I?).

Option #2--Milk of Magnesia.  Mix one Tablespoon M.O.M. with equal parts water.  Swish, gargle, spit. It's supposed to be a miracle.

Option #3--CandidaEX (recommended by a friend). She SWEARS this is the only thing that helped her.  I'm just concerned it will react negatively with the herbs I'm taking (which, by the way, are ALSO supposed to be eliminating this nonsense).

Eeny Meeny Miny Mo...

Off to Walgreen's to give M.O.M. a go.

Altered Today: Desperation, new cures