Alter Everything

Day 357: On Gratitude

I don't even know how to begin this blog post so I'm just going to say it: I feel tremendous pressure to be positive.

After all, I live in one of the richest nations in the world.
I have copious amounts of food in the fridge.
I am not dying.
I can move.

Who am I to complain?

Ebenezer Scrooge?
Oscar the Grouch?
Dr. House?
The mother on Everybody Loves Raymond?

Nobody likes a complainer (including me). As a society, we much prefer heroism, bravery, and strength.  Which leaves a dilemma...how to talk about the view when the view is less than desirable.

In an effort to tell the truth, without turning into Pinocchio, I just need to say this...I don't feel much like celebrating.

While nothing in particular is WRONG, what feels more authentic than being thankful is being real...even when talking about that reality isn't particularly inspiring. 

The truth?

The holidays can be a lot of things: Joyful, Nostalgic, Warm. For a sick person, they can also be challenging...foods you can't eat, distances you can't travel, stuff you no longer have the energy to do, noise, crowds, pain, and an overwhelming desire for normalcy.

I want pumpkin pie.
I want to play cards til 3 am without aches and exhaustion.
I want to sleep without crying.
I want to bake bread (and eat it).
I want to stop being poked/prodded/insulted by doctors.
I want my friends and family to be well.
I want my stiff shoulder, neck, and arm pain to disappear.
I want to be better.

I am not bitter about it.  I just need to say it.
Not just for me, but for all of my sick friends--especially those who are struggling.

This time last November, I could have never imagined that one-year later I'd still be sick and suffering (Can you imagine, over a year of feeling terrible?? Or, like many of my friends, several years???? Totally crazy.).

I know, it could be worse.

I'm thankful, it's not.

THANK YOU for allowing me to say that...without eye rolling, fixing, judging, comparing, minimizing, or lecturing. 

For that, I am truly grateful.

Happy Turkey Day.

Altered Today: LOL.  Learned a lot and didn't die. Yes.  Buddha would totally be proud.

Day 353: I'm Becoming Really Good In A Crisis

Mom:  "When will it stop?"
(responding to today's medical emergency)

In the bedroom, Rich, my brother-in-law--who never complains-- stands doubled-over, groaning, covered in sweat.

"Call 9-1-1..."
"Take him to the hospital."
"Get his medications."
"Find the doctor's number."
"Where's his wallet?"

Mayhem.

My family's having a horrible time lately. 

Rage, depression, migraines, pain.  Four people. One house.  All living, managing, coping, healing, existing with Chronic Lyme. 

Instinct told me they needed help.

Me (armed with vitamins, stuff for green drinks, detox materials):  Thought you could use a hand.

I didn't foresee kidney stones (not pleasant, but survivable).

Poor Rich--throwing up, reeling from pain, with elevated heart rate, and blood pressure.

As I type, he's under careful watch, being pumped full of IV liquids.
Everyone else is asleep, completely exhausted.

Life's never boring.

Altered Today: Appreciation for my improved coping skills. I don't worry ('til I have to).

Day 352: On Behalf Of My Vagina

Dear Transvaginal Ultrasound Giver,


Just a thought...

Transducer Insertion + Screaming/Cussing + Multiple People Begging You To Stop Raping Them could mean:

a) It's time to reevaluate your career choice
b) You need to be gentler
c) You're a Sadist

(Note: Ramming harder is not a good option)

PLEASE, for the sake of unsuspecting vaginas everywhere, work that $h@t out!

Sincerely,


The Future President for Pain Free Transvaginal Futures
(aka: Wakeen Funay Fromewe)

Altered Today: Womanhood

Day 351: Being Sick's A Full-Time Job

Art by Natalie Dee

Have you ever seen the Prilosec commercial?  You know. The one where the guy's rattling off his pill schedule?  Being a professional patient's like that. Not only from pill taking. It's the frequent treating and domino effect. That's what I most relate to.

In the last four days, I've seen six seven doctors/medical professionals....plus lab work...plus scheduling diagnostics....plus prescriptions...plus life.

Nothing's easy.

A trip to the Dermatologist turns into testing for T-Cell Lymphoma (it's negative).
The gyno finds a lump/tender node under my arm...so it's off for a ultrasound.
My chiropractor worries I might be "at risk for" lymphedema.
The gastroenterologist's afraid to touch my jar full of parasites.

In the next three weeks alone, I'm scheduled for a colonoscopy, a trans vaginal ultrasound, a mammogram, a breast ultrasound, four doctor follow ups, physical therapy, massage therapy, plus the usual twice-weekly acupuncture and chiropractic appointments.

PFHEW...make it stop!!!

I know, I shouldn't complain.
I know, I should be thankful.

After all, at least...

a) Insurance is covering some of it
b) People are checking every orifice of my body
c) I have doctors
d) My energy's holding up

But seriously...this is venturing into overworked/underpaid territory.

I feel a Wildcat coming...

Altered Today:  Dignity and the shear amount of people who have seen me naked.  I'm starting to think I should charge for this.

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

Days 348 and 349: When The Life You Get Is Not The Life You Planned

It's hard to believe it's been almost a year since Congresswoman Gabby Giffords was shot outside a Safeway store in Tuscon, Arizona. I remember it clearly. One moment, I was in a car arguing with a friend to stop procrastinating about purchasing eye glasses. The next, I was witnessing the aftermath of an apparent massacre: 20 injured, 6 dead, 1 recovering.

Choking back tears, my mind raced to similar man-made disasters: the school shootings at Columbine, September 11th, the drunk driving death of my girlfriend Shana when I was 18...

So sad and seemingly pointless.

When bad stuff happens to good people, I die a little.  Little bits of me float to heaven on exasperated tears...

Fix this.
Stop this.
Do something.

The coach inside me knows it's not what happens to you, but what you create from it that matters.

The impacted part of me grieves for motherless children, empty dining room chairs, and damaged souls who live to inflict pain on others.

Last night, as I watched Gabby Giffords and Mark Kelly's interview with Diane Sawyer, I couldn't help but reflect on my own journey...dealing with Chronic Lyme Disease and trying to make sense of the nonsensical.

It's been a rough 16 months, full of setbacks, and baby steps. This time last year, I questioned my sanity, while desperately searching for something, somebody, anybody to make it different, better, or bearable.

Now, disease is present, pain is present, but there's peace in the process...

I am where I am.
I'm not where I'm not.
All there is to do today is what there is to do today...even when the "to do" is to get out of bed, wash my hair, or get a colonoscopy.

I am proud of myself. I'm proud of the person I am becoming and proud of all of the people who--literally or metaphorically--take a shot to the head and keep on fighting.

Life is messy.
WE are messy.
We are also strong, capable, amazing individuals with a profound ability to make a difference in this world...regardless of our circumstances. 

Perhaps Edward Everett Hale said it best when he said: I am only one, but I am one.  I cannot do everything, but I can do something.  And I will not let what I cannot do interfere with what I can do. 

Whether that something is tying your shoes, speaking a sentence, or writing a blog post, as Gabby Giffords reminds us, do it with passion, love, and courage.  

After all, you never know who might be watching.

Altered Today: Heroes, Pride, Appreciation

Days 344-345: Thanks for Nothing Kim Kardashian

As I write this, I'm doped up on muscle relaxers. It's not common for me, reaching for prescriptions. But, for 13 14 days, I've been suffering: stiff neck, semi-locked shoulder, and arm pain.

It started with my left arm, then moved to my shoulders, then to my neck, then to my right biscep. I've tried massages, acupuncture, chiropractic treatment, Traumeel injections, lymphatic drainage, epsom salt baths, heat packs, cold compresses, a sling, compression garments...nothing's helped.

In desperation, I went off all of my meds/herbs on Tuesday.  The docs (and I) hoped, if we stopped treating so hard, things would settle down a bit.

They haven't.

In a dream, I consulted Kim Kardashian about what to do. She didn't have the answer. She did, however, tell me she got 75% off Vegas shows and advise me to dress up like a showgirl.

I'm not sure how desperate I need to be to consult a reality star or to wear a glizty bikini, but I'm pretty sure it's significant.

Feathers. Check.
Ridiculous Outift. Check.
Feeling better? No dice (pun totally intended).

Maybe I should talk to Khloe?

Altered Today: Routines, Dreams, and Frustration

Days 341-343: How/What I Am Doing

One of these stories is true.

a) I've been abducted and haven't had time/energy to talk about it.

b)  I've been feeling super bad, stopped all of my meds/herbs,
and am trying desperately to recover.
(Flexiril, massage, Traumeel...anyone?)

c)  I am on vacation, enjoying bits of magic, when/where I can.

d) I'm hiding in a coffee shop,
amongst hipsters and other undiscovered famous authors.



e)  I am out, trying desperately to find a good cuppa decaf,
and make up for seven days of writing slack.

e) All of the above.




If you answered "e," you're a genius.
Or, you know me way better than I think you do.

Gratefully, I still have friends who are kind enough to:
-take me on business trips
-put up with my odd yowling and routines
(Can you turn that light off?  Sigh.  Will you turn that down?)
-encourage me to do what I can
-love me unconditionally

Back to writing now...

Altered Today: Where and how I address pain.

Ps I stayed at a Holiday Inn Express last night.

Day 339: What Not To Say To A Sick Person

Go to any Lyme chat room and you'll hear it: people laughing/complaining about the things people say to them about illness. Top list of offending comments?

• At least you don't have x, y, z
• You're not better, YET????
• If you exercised, prayed, didn't think about it so much, were more positive, you'd feel better

Today, I got a triple whammy. On a lark, I stopped by one of my favorite diners (I haven't been in a year). For an hour, the owner and I caught up.....about life...my health....her new hair/boyfriend...and my diagnosis.

"I'm just glad you know," Jill said.
"Last time you were here, we knew you were sick, but it was just the beginning of it."

For a while, we both sat and wiped away tears.

Halfway through, one of my favorite waitresses stopped by.

"Where've you been?" she chided.
"Oh, you know, hiding out..." I answered, kind of nonchalantly.

Something told me not to tell her. Before I could say "tick bite," the conversation got so comical, I almost don't regret it.

Her: You have what?

Me: Lyme Disease.

Her: Is it curable?

Me: Not really...

Her (interrupting, without giving me a chance to explain): That's your problem, right there. You're negative. I can see it.

Me: Really? (smacking Jill, under the table)

Her: Yes. Trust me. To beat this, you've gotta be positive. You gotta get up every morning and smile...even if you don't want to. You gotta get out of bed, do the sign of the cross three times, put your feet on the floor, and plaster a smile on your face...even if you got to fake it.

-WOW-

I debated stopping her.
I debated telling her... a) I'm not Catholic, b) What she was saying is Kryptonite to a sick person, and C) People need compassion..not lectures.

Instead, I chose to hear the message behind the messenger.

Me:  Thanks for caring about me.

Her:  Stay positive. Next time you come in here, you'd better be smiling.

LOL

Thank God, I'm working on acceptance.


Altered Today:  Gratitude for the people who let me be me


PS For advice on how to talk to a sick person, go here.

Day 338: The Weekly Round Up

Throughout the week, I get all kinds of interesting questions, emails, and phone calls from people I know/don't know through my blog. Here are a few of the funny, not so funny, important things I followed up on this week.

Question #1: How's the novel coming?

Answer:  Novel? Did I say I'm writing a novel? How 'bout a book? A small, small book. Seriously, under the best circumstances, writing is hard (hats off Stephen King). Writing when you're sick? Next to impossible. So far, I have an Indian Goddess and a box of Cuban Cigars. Where it's going from there, I'm not sure.

Question #2: I am a medical practitioner and want to learn more about Lyme. Where should I start?

Answer: With the patients. Read every blog, join Lyme chat rooms, support groups, and forums. 

I also recommend:

-reading Insights into Lyme Disease Treatment
-attending conferences
-visiting www.ilads.org
-snooping around Better Health Guy and Jenna's Lyme Blog
-Studying Jemsek,  Burrascano,  Cowden, and Klinghardt.  For information about how Lyme (or GU Syndrome) is viewed in Traditional Chinese Medicine, go here.

Question #3: If you go to India and get stem cell treatment, will you have to work in a call center?

Answer: No. And that's not funny.

Question #4:  How are you and Angel doing? I worry about you.

Answer:  Angel and I are good. AND, we are still adjusting to life with chronic illness. He loves me. I love him. We fight. We make up.

Sometimes, I worry I share too much about my personal life, but, if documenting my door slamming or upset helps just one person, it's worth it to me.

Question #5:  You were doing so well with GU treatment. What happened?

Answer:  I'm not sure. Sometimes stuff works for a while, then it doesn't. Healing is a pretty up and down thing.  I haven't given up on GU. I think it's helping/helped me.  Right now, it might be helping too much (which could be why I'm hurting).  I may just need to switch it up a bit.

Question #6 (from a fellow blogger friend, also treating for Lyme):  I thought you'd enjoy a good rash photo of my butt...What do you think?  They aren't bulls eyes, but still, what the hell else could they be?

Answer:  Weird. Those look exactly like the circles I got on my thighs when I first got sick. WTH? Viruses/Lyme coming to the surface? I know Bartonella (Lyme's nasty cousin) can cause all kinds of weird rashes and sometimes people get bulls eyes while treating. Maybe a version of that? Internal Hives? Better check with the doctor...

PS Thanks for the butt photo. You're right. I totally appreciate it. ;)

Altered Today: Topics for discussion