Alter Everything

Day 265: My/Her Last Words

EDITORIAL NOTE: Kathy is out of town and it has been 243 days since I last blogged for my wife, but don't worry... I'm going to keep it business as usual in here.

When I first agreed to take over the onerous task of blogging in my wife's stead, I had visions of crafting posts from our cats' point of view (or less interestingly, from the dog's). After having survived the first blog takeover, I figured that it would be a piece of cake regardless of my approach. Second verse, same as the first! Maybe I could cut and paste! The possibilities were endless easy.

But then, as I kissed my wife goodbye, she dropped the bomb. "...don't forget to post, THREE DAYS in a row... and try... to make it.... Lyme related."

...LYME RELATED.

What a drag. I so don't want to write about Lyme.

I'm tired of it, aren't you? I know that my wife is. Endless conversations about symptoms and causes, insurance and doctors, opinions and speculation, fears and hopes... and the DRAMA, oh man.... the delicious and endless supply of drama from friends and family and internet strangers and SPOUSES. 

And the poop. There's always the poop.

If I'm tired of it, she MUST be tired of it. That's why I'm glad that Kathy is letting her friends take her to a beach house for a few days. I don't even worry that she'll be taken care of, THAT'S how good her friends are.

So here I am, running a Lyme Blog and continuing the conversation with all of her readers. I hope that she can rest easy.

Kathy's last words to me (a joke) as I buckled her into her seabelt:
"If I get swept out to sea, know that you were a good husband and that I love you."

I never take her seriously when she says stuff like that. I know that she's being playful... but at the same time, I know that if those were her true last words, she would approve all the same. That's my wife: multi-dimensional. <3

My Response:
Kathy, If you get swept out to sea, know that you were a good wife and that I loved you too... and please be sure to drown every last one of those miserable S###HEAD bugs!

 

Kathy won't be answering for the next few days (becuase she is on vacation), but I will. So here's a question if you're feeling playful: If you were about to be swept out to sea, what would YOUR last words be? 

 

 

Altered Today: How this blog gets produced, Cut-n-Paste, Famous last words

Day 210: Chasing Shadows, Spreading Light

www.TagudinPhoto.com   

I wish I had something good to say today.

I wish I could say:
I feel great,
I'm not worried,
all is well,
everything's fine.

I wish I could,
but I'd be lying.

The truth? 
Today's a hard day:
physically,
mentally,
and emotionally. 

Since getting sick,
three people
I love have been diagnosed with Chronic Lyme Disease
and, as friends around me continue to suffer,
the more frustrated I become. 

I am not helpless,
but it seems that way.
It seems like there's nothing I can do.
It seems like this disease kills everything.
It seems like there's no way out. 
It seems like there's no hope. 

Couple that with the myth that Lyme Disease is "easy to treat and hard to catch"
or that "Lyme doesn't exist in __________ (insert your state here),"
it's enough to drive a girl crazy
(if you let it).

So, today,
rather than fall into a black hole,
I am working on two things:
support and awareness... 

Support for my friend Juliana,
who continues to fight for her life,
and awareness by contacting Anderson Cooper .
Hopefully, if enough people reach out, this health crises will get the attention it deserves.

Make a difference. 
Click the highlighted links above to make your voice heard.

As Margaret Mead said: 
"Never doubt that a small group of thoughtful, committed citizens can change the world.
Indeed, it is the only thing that ever has." 


Altered Today: Involvement.

Day 209: Prayers for Juliana

"Jewels" on a better day with her son Johnny.

A while back, I wrote a post entitled With Love to Juliana. 
It wasn't an accidental title.
It was a tribute to a real person,
a real angel,
to somebody who changed my life
...Juliana King.
Juliana and I were brought together by fate via a Lyme FB support group.
I blog.
She blogs.
We both have Chronic Lyme Disease.
We also like the same You Tube Videos, Post Secret posts, quotes, etc.
It truly was a match made in heaven.

On my worst days,
it's Juliana who makes me smile.
On her worst days,
she does the same....
sending notes when she can,
spreading sunlight on my wall,
worrying about my insomnia and pain...
even though she can hardly lift her head.

Although we've only known each other a short time,
her impact has been profound.
She taught me to be positive.
She taught me to be grateful.
She made me appreciate the good days.
She also showed me “It’s not about who you’ve known the longest
…it’s about who came and never left your side.”

Now, the girl who loves and supports so many,
needs our love and support.
I love you, Juliana.
We love you, Juliana.
You can pull through this.
You will pull through this.
As you would say...
Never Give Up...Miracles Happen Every Day!!!!

  
Can't wait to see you smile again.
XOXOXOX

Altered Today: Juliana's Health.  Please post your uplifting quotes, videos, wishes, and prayers for Juliana by friending her here. I don't know when she will get to reading them, but I know they will make her day. 

Day 189: Being a Professional Patient

After 10 months of being sick, a girl can learn a few things. 

Not just about life, but about process...when to hold 'em, when to fold 'em. I can't tell you how many times I've said to myself "MAN, I wish I would have known that sooner" regarding doctors/treatments/paperwork.  So, in an effort to spread the wealth, here are a few things I've learned along the way or wish I would have done differently.

Document Everything
Gotta new rash? Strange stuff coming out of your body? Take a picture and save it (in print and on line). I swear...I'd give ANYTHING to have photos of some of the things I've shown previous doctors...especially stuff from the VERY beginning (rashes, secretions, etc). I know...it's weird...treating yourself like a potential CSI case.  But trust me...if things go nutso...you'll WISH you had bothered to save the evidence.

Stop Doing Double Work
If you go to more than one doctor, you will be asked to fill out the same information over and over and over again.  Easiest way to avoid that? Make up your own patient history form that includes a list of past surgeries, hospitalizations, accidents, traumas, insurance info, treating doctors, emergency contacts, medications/dosages, allergies, lifestyle habits, and other relevant information. When you get to that section on the patient history form write "see attached." Such a time saver (She says after recreating her patient history for the umpteenth time). Why didn't I think of that sooner?

Get Copies
Copies of doctor's notes, copies of research articles you find, copies of bills. Copies, copies, copies.  My friend Delores prints a copy of every internet article she finds related to Lyme Disease and puts it in a binder. Another friend, Cindy, gets a copy of notes after each visit. To get lab results quicker, write your fax number on the order form...that way they will come to you--not just the doctor.

Write Things Down
Keep track of what's happening, when it's happening, and how it relates to outside factors (medications,* monthly cycles, activity, etc.).  To view, how I keep track of my symptoms, go here. Have a question that pops up between visits?  Write it down (trust me, you won't remember). Then, date the list and take it with you to your next appointment.

Keep Your Cool
This was the hardest lesson for me...especially when dealing with a disorganized or incompetent staff.  Initially, I wrote off many offices for lack of getting a return call. One time, I stormed out of a cardiology office after getting booked with a PA instead of the doctor. While I am not suggesting you settle for poor service or rude behavior, I am suggesting you spend your energy wisely.  My new motto? I am here to get well -- a job that may require navigating a broken system. Can't get your phone call returned? Fax or have a healthy friend call for you. Need a question answered, but don't want to pay for another appointment?  Show up (uninvited) before the office opens. I've had lots of great consults in parking lots or by catching people on the way to the bathroom. Bottom line? Don't let your ego (or temper or righteousness) get in the way of your treatment.

Find a Mentor
After months of being sick with no diagnosis, I felt bonkers.  COMPLETELY CRAZY!!  The only thing that saved me was connecting with smart, competent people who'd been there before me. When I didn't know what was happening or what to do next, I'd ask them (still do). Then I had to learn to trust their answer (hard for a control freak). Educate yourself. Make your best choice. Then move on. You'll learn who to respect, what makes sense to you, and what path to follow. Just Listen ...to yourself and others.

Have more advice on how to be a smart patient? Please email or comment. I'd love learn from you.

Altered Today: Sharing my secrets, asking for yours.

*6/9 UPDATE...Just got this really great note and med tracking sheet from my friend Pete Smith who can be found on line at raisinglymeawareness.blogspot.com. To see how to use it, Go Here. To access the spreadsheet... Download Pete Meds_Sample.  THANKS Pete!

Day 188: Return of the Green-Eyed Monster

A while back, I had an embarrassing revelation: I'm jealous.

I'm jealous of friends.
I'm jealous of enemies.
I'm jealous of rich people, tourists, movie stars, moms, people who can sleep, people who can work, people who eat bread, people who make bread, people with good veins, people with more treatable/recognizable illnesses, and practically anyone who gets through the day without parasites, pain, doctors, pills, IVs, crying, or dying.

It's an ugly feeling; one I want desperately to Hide...Ignore...Replace.
But I won't.

There's so much I want out of life...to ride an elephant....to publish a book...to kiss under the stars in Venice....to feel good again...to have a family...to make a difference.  I'm glad others have these things, but I want them too.  Does anybody else (sick or well) struggle with jealousy? How do you cope?

Altered Today:  Asking for support

Day 181: A Crack in the Foundation

Put anything under stress for any amount of time and stuff starts to crumble.  Buildings, with weak structures, tilt and sway.  Sidewalks split.  Bridges collapse.  Hearts stop. And anything...with any flaw...already present.... becomes magnified 100 fold....sometimes beyond repair.

It was a hard night. Pain crept into my heart, head, and marriage.  This is not the life we planned. This is not the life we want.  Yet, this is the life we have...filled with disease, fear, and uncertainty. 

I am not sure if this is "fixable"-- if I am fixable -- if WE can do this.  I know diamonds come from pressure, but so does dust.  I just pray we don't disintegrate and end up as the latter.

As I move forward today, I am scared and filled with dread.  Perhaps from pain or lack of sleep, but everything's raging: symptoms, sadness, self-doubt, and suffering.  The elephant in the room is awake and she is stomping all over my sofa. Hopefully we can outrun the damage before it swallows us whole.

Altered Today:  Reaching out for support, calling a counselor.

Day 164: AWKWARD...What Is Up With All The Arguing?

                                                                            Is Lyme causing us to think less clearly?

The quick brown fox jumped over the lazy dog. That's how my husband said I should start this blog post. Seriously, however, I am having a dilemma. I somehow want to illustrate my COMPLETE discomfort watching friends argue on Lyme Message Boards. Can you think of a good opener?

It is akin to watching couples fight when you have been invited to their house for a dinner party.  You go there thinking: "This is great. We'll relax. We'll have a good meal."  And you end up wondering how to get out gracefully...secretly questioning why people can't handle their upset in a more productive manner.

Now, don't get me wrong. I LOVE a debate. I LOVE when people disagree. I LOVE when people have opposing views and stand up for what they believe in. What I don't love is hate.  What I don't love are disparaging remarks. What I don't love are opinions...touted as facts...that are used to separate and pit people against each other.

THIS makes me crazy.

Honestly, there is so much drama surrounding Lyme Disease (and life in general).  Do we really need to perpetuate it within our own communities?

I am not pretending I have a solution here, but...as a human being and a life coach...I am engaged in the question.  What can we do to talk, laugh, and discuss things in a productive, positive environment?

If you have thoughts, let me know.

 

Altered Today: Home for Kitty, Opinions About Message Boards, Desire to Create a Lyme Positive Community

Day 145: What Makes You Green? A Word About Lyme Awareness

When I first started visiting Lyme message boards, I couldn't help but notice....everyone was green. Not "green" environmentally, green physically.  There were green hairdos, green sneakers, green faces, green glasses, green ribbons. Everywhere I looked...green, green, green.

Painting your photo the color of algae is cool in the Lyme world. It's also something I didn't get right away.  "Why would people constantly want to be reminded of their illness?" I questioned, sometimes out loud.  "Is that even healthy?"

Now, having been around a bit--as both a spectator and a participant--I understand.  It's not just a cry for attention. It's not just a way of getting sympathy. It's not just an awareness tool.  It's a way to recognize: who's on your team, who's your ally, who knows what you are going through (something critical when you spend most of your time on line talking to strangers).

Yesterday, I friended so many Facebook Lymies, I literally got blocked from using my messaging service (damn you, spam blocker...shaking fist at the sky).  The only way I even found these folks was by the slime peeking out of their photos (which I was grateful for).  Based on that, today I updated my profile pic to reflect my own "undiagnosed" status...something a Lymie will definitely understand.

My motivation? One part necessity, one part awareness, and 100 billion parts LOVE.  Even if I don't have Lyme, these are the people who keep me going.

Psst....May is Lyme Awareness month.  What makes you green?  Pass it on.

Altered Today: FB photo, friendships (thanks Saima), and compassion.

Day 134: CommonScents

  Ad found via The Uprising--a fun little vegan blog with a smart-ass attitude

It's official. I am never wearing perfume again.  Don't get me wrong. I like to smell all good and sexy and lush, but with so much going stuff on with my health, smells aren't just offensive; they literally make me sick.

Case in point, this morning; sitting in the sauna. There I am, snug as bug, getting my pain out, reading my Goldberg, when a nice, "mature" lady comes in with her cell phone, clothes, and towel...presumably to warm up after a dip in the pool. She sits down, checks her messages, pulls off her towel, starts drying her business (a sight I could have done without), then pulls out a bottle of body lotion...fresh with jasminey goodness.  EWWEEEE.

For a second, I debate. Do I a) run? b) ask her to put it away?  c) hold my breath in hopes of a quick passing? Feeling optimistic, I choose "C".  Not too smart for an enclosed 6'x8' space (that first breath was a doozy). 

Luckily, I escape just short of barfing, but not soon enough to avoid the chest/throat pain that make me feel like I need to call 9-1-1 (bleach, scented candles, smoke, incense, deodorant, cleaning products, hairspray, air freshener all cause a similar reaction).
 
I assume it comes from having decreased immunity; many Lyme friends suffer the same (or worse) symptoms.  Still...besides staying home, besides karate chopping some folks, besides wearing a gas mask, what's a chemically sensitive girl to do?

Altered Today: Looking for common scent solutions, reminding others...think before you stink

Day 133: Going Quackers

If it looks like a duck, walks like a duck, and quacks like a duck, it must be a duck. That's my thought when it comes to Lyme Disease.

I certainly LOOK like someone who has Lyme.

• Random rashes--check
• No longer able to work or do anything strenuous--check
• Mixing up my words/thoughts--check
• Constantly crying from random stinging/sharp pain in my: elbow, foot, stomach, neck, side, ribs, head--check
• Can't take bright lights, loud noises, crowds--check

I know I WALK like someone who has Lyme.

• Moving like a 90 year old--check.
• Grabbing onto things so I don't fall down--check
• Sometimes not able to walk at all--check
• Holding my arms, legs, or heart like Fred Sanford--check

I definitely QUACK like someone who has Lyme.

• Multiple unexplained viruses--check
• Bit by something around the same time it started-check
• Abnormal CD 57 and C4 levels--check
• Positive for Lyme antibodies, negative for Lyme antibodies --check
• Stiff neck, sore hands, unable to lift my arms, can't hold on to things, tingling in face, pain in ribs, plantar fasciitis, shooting/stabbing pains that move--check
• Racing thoughts and panicky feelings of despair--check
• Sore joints and muscles--check
• Intense pain in my stomach/back/legs that drops me to my knees--check

My doctor has told me on more than one occassion he thinks it's Lyme.
My symptoms line up with every person I have ever talked to with Lyme.
Every book I read points me in the direction of Lyme. 

If I don't have Lyme, what the hell is it?!?!?
And, if they think I have it, why won't they diagnose me?

Altered Today: New Journal to track symptoms, level of frustration