Alter Everything

Days 378-385: I Know What I Know

 

Alton Brown's talking about yeast on Food Network. He's discussing pizza dough: how slow rise is better than fast, how yeast needs time to ferment. To help, he's adding malted barley.  Words like gluten, gliadin, and crisp leap from his lips. I am drinking a green drink trying not to puke from the nystatin I just took on an empty stomach.

The phrase medically fatigued doesn't begin to express how I'm feeling right now. My mouth is on fire. Stomach pains plague me. My stool is yellow. My upper abdomen's distended.

Over the last week, I've been told a myriad of things from numerous doctors.

"Viruses aren't a problem...."
"Candida's not real...."
"Take Priolosec..."
"Your system is over-reacting..."
"It can't be thrush..."
"It's not cancer..."
"Eat fiber..."
"The white rice in my stool (aka parasites) is probably just excess mucous..."
"You might have an ulcer..."

Yesterday, I was diagnosed with Glossodynia--otherwise known as Burning Mouth Syndrome. Research suggests it's a random thing.  Depression, Menopause, Viral Infections, Nerve Damage, poor dental health, GERD, thrush, nutritional deficiencies, allergies to household chemicals--all get the credit.

I'm tackling the GERD/allergy/nutritional/thrush angle.

• Sodium Lauryl Sulfate-free toothpaste
• Alpha-Lipoic Acid
• Upping the greens
• Continued gluten-free, sugar-free diet
• B-12

Testing with specialists is torture.

Me: I don't have an appetite.
Them: You're fat.
Me: I should be a bird for how little I eat.
Them (with a look of condemnation): Ka-theeee, it's simple mathematics...calories in/calories out.

My colonoscopy reveals melanosis (discoloration of the colon) making the conversations even more comical.

Them: Do you take laxatives?
Me:  No.
Them (in a condescending tone): Ka-theeeeee, melanosis is only found in people who abuse laxatives.
Me (at least in my head): Well, I don't know what to tell you, doc.  I'm not a liar and I'm hardly bulimic. Perhaps it's time to start upping the medical research.

The arrogance of the medical community is astounding.  I've never considered being a doctor. Now, I can't stop thinking about it.

On the bright side, my neck and shoulder pain's subsiding. I'm sleeping better. I feel less sickly. I'm getting better at comforting myself.

"They don't know the whole story..."
"They're trying to help..."
"They only speak of what they know..."
"You're not crazy..."

I try to remember.

Mostly, I'm learning...who I am, who I want to be, who I don't want to be, how to listen, how to treat people, how to trust myself.  Over and over and over and over again, I'm learning.

Day 377: At Least My Imagination's Healthy

Source

Take one large screen tv, add some gel, a little ultrasound thinga majickey, an overtired, borderline desperate Lyme patient...there is a recipe for disaster. I'm not too catastrophic about medical tests (more que sera sera), but, with every click of the computer keyboard today, I became more and more worried.

"What's that giant hole?" I think, looking at the 3-foot monitor.

When you've experienced enough testing, you learn: They only click to a) measure the size of an organ or b) capture an abnormal finding.

For 20+ plus minutes, we go through the routine.

Click. Pause. Click. Press. Click. Click. Click.

"Take a breath. Hold it."

Again and again and again and again.

"This is it. I'm dying. My body is trashed. Stupid Ivermectin."

Sixteen months of worry flood my brain...

What to tell Angel....
Thoughts of being rushed to the hospital...
How to finance a liver transplant...
How I'd rather be dead than suffer...

By the end, I am positive: major stuff is going on in my organs.

Vickie (the Sonographer) has other ideas.

"Looks the same as it did last time." (ie: polyp in my gall bladder, cyst in my liver)
"Really? By the way you were clicking, I thought I was dying."
"Not today."

:)

I'm so ridiculous.

Day 376: Miss Cleo's A Bust

 

Sooooooo, in a desperate attempt to cure my chronic thrushy, mcthrush and wormy mcworms, one of my doctors recommended I visit another doctor who is said to have great "intuition" when it comes to figuring out complex health problems.

"She's a miracle worker," I was told.
"Knew my patient had cancer before science could show it," they said.

Soooo, I made the appointment.

My actual 5-minute conversation, after driving for 30 minutes and waiting an hour.

Said psychic miracle worker (in her THICK Jamaican accent): What seem to be da problem?

Me: Well...I'm hoping you can tell me.

Her: You sick? You have tings going on with you?

Me: Well, I have Lyme, but...

Her (interrupting): Ufffft...Ya have Lyme???? Ya DONE. Tere's no helpin' dat.

Me: Well, I'm not really here for dat. I'm here about thrush and possible parasites. Testing and medications aren't helping and I heard you have a good sense about knowing what's going on with people when science can't figure it out.

Her: Not today. Not in ya case. In ya case, I've got no-tin. Ya got Fibromyalgia? Uffft...Ya DONE. Tere's no helpin' dat.

Me (laughing at the ridiculous of it all):  Well...I appreciate your honesty.

Her:  Ya get da colonoscopy?

Me: Yep.

Her: Ya get da stool test?

Me: Yep.

Her: Phhhh...I dunno know. Maybe Infectious Disease doctor? Lyme, parasites, Fibromyalgia... Ya get tose tings, Ya DONE. Tere's no helping dat

Me:  Well...at least you've heard of it.

ROFL. Call me now.  Do you believe I just paid (or insurance just paid) for dat??? Thank goodness I haven't lost my sense of humor.

Days 366-375: Dragon Rider

source

I was not dreaming. I was not awake. I was merely resting, staring at the purple lotus flower (whose insides look like a salt shaker), meditating.

"What do you need to heal?" I asked myself, breathing through the Acupuncture needle zinging in my left foot.

Images washed over me.

My bowels opening up. The waste turning into a dragon. The dragon rising out of the bowl into the air. Me climbing on to its back and flying away.

Tears flooded my eyes.

Then a whisper...

"Suck the sick out of your neck."

A phrase, ironically, I've said to my husband more than 637 times.

For days, I've been searching.

"Here...dragon, dragon, dragon."

She's silent.

I've also wrestled with sick.

...blood letting
...chiropractic
...physical therapy
...massage
...Cranial Sacral
...detox, pills, potions, saunas
...scans

IT won't budge.

Walking hurts. Eating hurts. Turning my neck to check my blind spot hurts.
Life hurts.

Better. Not well.

And well is where we're going.

Day 365: Starting Over

525,600 minutes.
525,000 moments so dear.
525,600 minutes.
How do you measure,
measure a year?
-Rent

If you've ever seen the musical Rent, you know the Seasons of Love song. With just a few simple words, it captures the struggle we all have: to experience joy and pain and treasure it all equally.

This past year has been like that.  365 days of inches, miles, laughter, and strife.

So many nights, I thought I was going to die.
So many blessings...created from misery.

There are no words to describe what it's like to cry out, night after night, drowning in the dark.
Or, how much you appreciate an "ordinary day," once it's escaped you.

I can't express it now, but I hope these 365  (or so) posts somehow did.

I'm grateful for that AND for you.

Thanks for listening.

 Here's to what's next.

Altered Today: Peace, Completion

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 362: Unexpected Benefits of My Lyme/Parasite Induced Colonoscopy

Benefit #1: EXTREME Colon Cleansing
Seriously, I'm pretty sure I passed earwax, but I also passed TONS of toxins, candida, and other stuff. Thanks, Dr. A, for un-jamming my system.

Benefit #2: FREE Lactated Ringer
Electrolytes?  Balance my ph level?  Help my muscles/nerves function?  Something I frequently pay for?  Count me in.

Benefit #3:  OXYGEN
Lyme hates Oxygen. I hate Lyme. Case closed.

Benefit #4:  Sleep
Need I say more?

Benefit #5: Pain Relief (my favorite)
Sunday morning, the pain in my neck and shoulder was so intense, I couldn't lift my arms, turn my head, or sleep (this has been happening for several weeks). By Sunday night, after 32 pills and 14 trips to the bathroom later--yes, I counted them--the pain was SIGNIFICANTLY less.

This morning, after my second enema--and five more trips to the banyo, I was almost shoulder pain-free.

Now, I feel absolutely wonderful (or at least semi-human).
Clearly, I needed some serious detox action.

Angel says I am probably the only person to come out of a colonoscopy feeling better than when they went in.

Benefit #6:  Proof--I'm Not Crazy
There's some funny stuff happening in my colon. My gastroenterologist confirmed it.  Hopefully, those high-powered, on-site microscopes can figure out what it is. I'll know next week.

Benefit #7:  REALLY Nice People
The staff at Winter Park's Endoscopy Unit was AMAZING--very respectful, very thorough, very considerate. I cannot give enough compliments here. The experience made me extremely happy and proud...especially since a) I've been having such crappy luck with doctors lately (un-blogged about) and b) I used to work in the hospital's marketing department.

Benefit #8: Giggles
A conversation with my anesthesiologist afterwards...

Him: So, do you remember anything?

Me: Should I?

Him:  Well, we weren't sure. You woke up in the middle of the procedure.

Me: Really?

Him (imitating me): "Uh, hey guys? I'm awake here. I'm comfortable.  It's ok.  But should this be happening?"

LOL.  Thank goodness I didn't cuss at anybody.

Altered Today: Opinion about the rope scope, hope for the western medical community, pride in myself for being kind while unconscious.

PS My doc's last words to me? "Don't worry, we're going to figure this out."
WOW! So much better than "Are you sure that's not apple skin?"

Day 361: Not The End Of The World, Butt...

Colonoscopies Aren't For Sissies.

There's medication downtime, prescription prep, liquid diet supplies, hospital paperwork, next of kin promises.

Did I mention medication downtime? Man, I'd kill for a muscle relaxer.

Over the next 24 hours, I will eat broth and green jello, drink diet ginger ale, take 32 pills (in 8 batches, four at a time, with 8oz of water), do two enemas, go the restroom X times, have anesthesia, AND get a scope up my rear.

Holy Camole!

Hope it's worth it. :)

On the bright side, I am looking forward to some uninterrupted sleep and being doped up for a bit.

As my friend Gary says: Make mine a double Venti, please.

Catch you on the flip side...

Altered Today: Everything you would ever normally do on a Sunday that doesn't include taking pills every 15 minutes and pooping non stop.

PS Congratulations, Elaine, you're my new health surrogate--SURPRISE!  Not quite the Publisher's Clearing House, but hey...that's what you get for being a badass. ;)

PSS Hoping I'm wrong here, but think I might be getting shingles.

Day 359: Tell Me What You Love About Your Life

I'll admit it. I've hardly had any good news lately. If it's not thrush, it's my shoulder. If it's not my shoulder, it's my neck. If it's not me, it's my family. If it's not one miserable procedure, it's another.

Justified or not, I'm beginning to feel/sound a lot like Eeyore.

"No gaiety, no song and dance, no "Here We Go 'Round the Mulberry Bush."

"Oh, joy..."

Here's me taking a stab at "elevating the conversation" (and my mood) by answering one targeted question:
What do I love about my life?

Feel free to play along.

I love that my cat won't rest until she snuggles up on my leg, chair, or chest.
I love that my dog Betsy follows me everywhere.
I love that I live one minute from Whole Foods, a movie theater, and the gym.
I love my Acupuncturist, my LLMD, my Massage Therapist, and my Chiropractor.
I love that Angel can stay home and make money.
I love singing in the bathtub/car/shower and making up songs while driving.
I love watching movies.
I love my friends--many of whom I never would have met without illness.
I love my handicap parking pass...not that I need it, but that I can use it.
I love being able to go to Disney any time I want to.
I love Deland Bakery Yeast-Free Millet Bread.
I love my family and how willing they are to support me.
I love Angel's sense of humor and how he appreciates animals...even tiny, inconsequential ones.
I love watching the Occupy movement unfold and seeing people stand up for what they believe in.
I love magazines and lazing the day away with a good cup of hot tea.
I love folk music and, to my surprise, Lady GaGa. Did you see that Thanksgiving special?  Man is she talented.
I love when Finster (my very large, very bad, white cat) spreads out his toes to chew his toenails.
I love my random folk art collection.
I love my La-Z-Boy(s).
I love witty, satirical, crass blogs that make me laugh til I cry.
I love the ceilings in my bedroom and living room.
I love listening to A Prairie Home Companion and This American Life.
I love that, since getting sick, I've been able to help a lot of people figure out what's wrong with them.
I love vintage books and using them to make vintage book journals.
I love what UNDAs have done for my brain fog.
I love that I'm able to walk longer and breathe a lot better lately...no cane, no wheel chair necessary.
I love my Favorite Lyme Nurse, Santa Maria, and doc's former Trusty Sidekick.
I love this meditation.
I love thinking about what I love about my life and that I'm still willing to do it (hey, I'm still in here somewhere).

Happy Black Friday!

Altered Today: Focus. No need to be black and blue. Right?

Day 358: Thanksgiving At A Glance

photo by LessRoads

What I woke up to...


photo by Mimi's Cafe

What I ate...



What I made...



How I felt when Angel sneezed and blood went all over the place...

How I looked when my pharmacist--who was trying to fill Angel's script from his doctor's appointment yesterday--
said he couldn't verify our insurance coverage...


source

What I did while the same pharmacist talked to my insurance company
for 30 minutes to figure out the problem...


source

What I am grateful for...




Altered Today: Hopefully Angel's health, my dog's crate, and a stranger's fate
(emailed her about the possibility of her daughter having Lyme Disease).

I love you. Thanks for reading.