Alter Everything

Day 217: 365 Project

                                                                                   My first pic -- A Small Light


"Share a photo every day for a year." That's the goal of the 365 Project. Users sign up, take a snap, then share the shots with family and friends...creating a visual on line diary. At first, I was reluctant to join.  After all, I blog daily. Isn't that enough???  Still, my desire for perspective trumped my fear of overwhelm. Besides...what else am I going to do? It's not like I'm out running marathons.

I like the idea of documenting the journey...in words, pictures, or otherwise.  Just having this new goal makes me look at my environment differently. Before yesterday, I never appreciated the bathroom night light or my red light switch. Kind of pretty, don't you think???

Wanna play along??? To create your own 365 Project, go here. If you do, let me know. I'd love to see the world through your eyes.

XOXO

Altered Today: Self expression

Day 190: Easy Does It

Photo by Angel Tagudin

I read the BEST blog post today.  Not best, like Pulitzer Prize winning. Best like...rearrange your molecules...make you think...consider life from different angle (always my favorite kind of thing).

I especially enjoyed it for two reasons:
1) It was written by my friend/super health cheerleader...aka brave new blogger, Saima.
2) It made me ask myself a powerful question: What comes easy to me? Something I haven't considered in nearly a year..none the less spent any energy focusing on.

Lately, thinking about what's hard for me is easy. It's easy to worry about my future. Easy to focus on the negative. Easy to get swept up in despair, jealousy, pain, and bitterness. Easy to feel really, really awful for extended periods of time.

But, there are other things, too. Things that get less attention. And, if I take a minute (really breathe them in), it's easy to remember.

For example...
1) Losing myself in a great piece of music (I can surf YouTube for hours)
2) Making people feel loved and appreciated
3) Finding/encouraging potential
4) Public speaking
5) Sales
6) Loving animals/strangers
7) Talking
8) Making up poems and songs
9) Researching 
10) Napping
11) Listening
12) Seeing both sides of the story
13) Writing
14) Standing up for what I believe in
15) Being excited/enthusiastic/inspired/inspiring (about possums, causes, good service, kindness, office supplies, you name it)

These things, I'm really good at.  It's actually nice to think about them....you know, focus on what makes me special, rather than what makes me feel rotten.  Thanks, Saima!

What's easy for you? Pass it on.

Altered Today: Appreciation for me.

Day 109: The Girl in the Mirror

My Portrait by Angel Tagudin

Five years ago, if you asked what I thought I would be doing today, I would have told you all kind of things:

I would be pregnant (if not already a mother).
I would be published (if not at least near completion of a novel).
I would be in a new house.
I would be thriving in my business.

One thing for sure, one thing I would not be;  I would not be sick.

If I were sick, it would be temporary; the stuff of colds and achy heads.  I would fall, but recover; bend, but not break.  Never, in my wildest dreams, did I think I might be too weak to lift my arms or work full-time. Never, in my worst nightmares, did I imagine I'd have something so complex that four doctors would be consulted just to start figuring out the problem.

Growing up, doctors were Gods...they had all of the answers. Now, six months into chronic illness, I view them as scholars, armed with formulas and theories, blinded by human limitations.

Today, as I look in the mirror, I barely recognize the girl I see. With curiosity, I study her features:  The new lines that furrow her brow; The permanent pinkness that covers her chest; The dimple in her chin; How the corners of her mouth turn down.  There is a vulnerability to her and a sadness.  She no longer does her hair or wears make up.  She's familiar, but strangely distant.

They say a picture is worth a thousand words.  When I look at mine, I no longer see myself.

Altered Today: Missing me. Time out with a friend to forget about it.

Day 107: The Real Groundhog Day

 

Each morning I wake up, I think the same thing.  "Man, that was a bad dream," I'll suppose, before opening my eyes.  Then, as I get conscious to the feelings in my body--the cold in my stomach, the ache in my neck, the stinging in my arms and feet--I remember; that wasn't a dream. I really am living this nightmare.

Being chronically sick is like that. It's like the movie Groundhog Day and I'm Bill Murray smashing the alarm clock, praying for it to end.  Some days, I play with it.  I kiss the annoying Maitre d'.  I pretend it isn't happening.  Other days, I'm consumed by it...wrapped up in doom, covered with despair.  This morning, as I stared at the clock, I couldn't escape the sadness.  Even in my dreams, pain was with me.  I was chased.  I was sued.  I was blamed.  And, I was forced to eat onions...handfuls and handfuls of freshly cut, eye-stinging onions.

I do not want to get up today. I do not want to fight. I do not want to drink vegetables, sweat in saunas, or watch Wayne Brady dance on Let's Make a Deal.  I want to scream. I want to cry. I want to punch.  I want to destroy something...before it destroys me. 

In many cultures, destruction is a good thing.  In the movie Outsourced, Kali--the Hindu goddess of destruction--is kept on a taxi's dashboard...just as a reminder. 

Kali, the goddess of destruction

"Why would you want the goddess of destruction in your car?" the main character questions. 

"Sometimes destruction is a good thing," reminds his guide. 
"She ends one cycle so a new one can begin." 

In the end, destruction creates a better life for Bill.  He lives in the moment.  He becomes more compassionate.  He learns to seize the day.   In the middle, though, it's tough.  And I'm right there-- trying to escape destiny and falling into puddles.

Altered Today: Being with Winter.

Day 103: It's Not Lupus

As you move along in life, it's funny the things you get excited about.  Just last week, my parents were thrilled to get a $4,000 bill for home repairs (they thought it was going to be WAY more).  Today, I had almost the same reaction while visiting the doctor's office.

"It's not Lupus," the doc confirmed as we went through my medical labs.  Although that sounds like good news, that puts me one step closer to Lyme Disease.  The tests also revealed a bunch of other problems; including five new viruses now flourishing in my body.

At first, I was pleased with the results--even energized.  After all, I am getting closer to knowing what I'm dealing with and there are new steps to take; antivirals, blood to IGENEX, follow up in four weeks. 

Still, after Googling lab findings, reality set in like an unwelcome visitor.  There's a long road ahead; a shitty, long road.

Altered Today: Knowledge of what's happening in my body, path of treatment, new box for new meds.

Day 101: The Luxury of Ignorance

The sauna has become a sanctuary for me.  For 20 minutes a day--sick or semi-sick--I go there:  body brush in hand, book in bag, keys clutched in my right fist.  It is a quiet place, free of distraction.  A place where the toxins stir up and melt away.  A place where pain goes to battle.  I love that place and I treasure it most when I can have it alone, free from large, naked women and chattering girls.

As I approached today, I knew I would not be so lucky.  Pain crept in my neck, as I pulled open the heavy sealed door. Cackles and laughter spilled out.  Unable to return later, I surrendered.  I nudged into a small corner, laid out my towel, and sat down.

"You're having too much fun for a sauna," I commented to the loud blond with the large diamond in her nose.

"You haven't seen anything yet," she said, as though challenged.

Moments later, an elderly woman steps in.  She's frail, armed with a bottle of body lotion.  Within minutes, Miss Diamond lifts one butt cheek in the air.  A loud noise, a cross between a rhino and water cooler, escapes from her bowels.

"Please tell me you are not farting in here," I say pointedly, with a look of disgust.

"I can't help it. It happens after I swim," she says, laughing.  "They don't smell."

The two playmates giggle. The old woman leaves.  I sit, shaking my head.

The shenanigans continue.  Talks of what $3,000 bike to buy. Where to go to breakfast.  How to spend the holidays.  And, of course, more farting. 

I debate jumping in. I debate pointing out how disruptive and self-absorbed they are. I debate telling them how some people aren't here to warm up after a swim and that this is therapy.  I debate lecturing how, even if she can't help it, she can leave the room.  I debate telling them I'm sick. 

Instead, I stay quiet.

"Sorry," the girl apologizes again as she lets one go.  "I feel sorry for you," the friend says to Miss D.  "It must hurt to keep them in."

In that moment, I experience a storm of emotions:  Angry, Self-Righteous, Demeaning, Punishing.  For a second, I want those girls to hurt--not for their bad manners, but for their ignorance.  People are dying in Japan. People are sick.  People are suffering and they have nothing better to talk about than bikes, boys, and gas.

I hate those girls, and I envy them.

Altered Today: Observing instead of reacting. Living into my new law.

Day 96: Beautiful Day

Me with a Video Blog Message

In case you need a reminder:

 

Altered Today: Sense of Hope, New Smoothie Recipe, New Blood and Breath Test, Time with Family to just have fun.

Day 90: Touched by an Angel

In my life, I have always been surrounded by Angels.  My husband's name is Angel.  In moments of great sorrow, I swear I have been visited by Angels.  Many of my friends are Angels. And, I am confident, my dog is just an Angel with fur.

It's been said Angels wear a multitude of disguises. One day, they are a beggar. The next, they are a child. The next, they are butterflies, thoughts, or birds.  Yesterday, I actually got a glimpse of an Angel.  Her name is Laina and we were introduced in the most surprising way, via letter in the US mail.

Laina lives in Denmark and found this blog via another blog about a month ago.  She, like so many folks, faces her own struggles in life. She, unlike many folks, puts aside her struggles to make a difference for others.

Without getting into specifics, Laina wrote to me after watching my video Day 82:Tired of Being Sick (a video I REALLY debated about whether to post or not).  She was concerned and wanted to reach out.  Among her words, I found encouragement, love, and support.

In her letter, she reminded me of something important...something I hadn't really considered.  "I think you're grieving," she said.  "Perhaps mourning life as you knew it?"

In that moment, I knew she was right.

I am grieving. I miss me. I miss my old life. I miss the illusion of promised tomorrows and I'm upset about it.

Her timing was impeccable.  The day before, I just discussed Emerson's Law of Spiritual Gravitation and was in the middle of writing about my struggles with isolation and illness. I had also just finished reading a beautiful adaptation of the It's Gets Better campaign written for Lyme sufferers and, as the article references, was looking for "the friend pulling gluten free crackers out of her purse."

I don't know what will come of my new friendship with Laina: if we will meet, if we will keep in touch, or if we will ever speak again.  What do I know? My life has been profoundly altered by an act of kindness delivered from more than 4,000 miles away.

Altered Today: What I was originally going to write about.  Faith in good people and good things. Appreciation for what I have. Thoughts about writing and the difference we all can make with a few simple words.

Day 89: How to Support Me Now That I'm Sick: An Open Letter to Strangers, Family, and Friends

Let's face it.  Lots of stuff stinks about chronic illness: the pain, the unexplained symptoms, the unpredictability, the worry.  When I first started to get sick, I had so many symptoms, I had to make a spreadsheet to keep them organized.  Now, after six months of not working, not participating in regular activities, not volunteering, and hardly going out, I have new concern.  But this one isn't an indicator of my disease, it's caused by it.

Being lonely is a human condition--even in the best of times.  I've been intensely lonely many times in my life--in a foreign city, when I shattered my knee cap, after a painful break up.  None compares to the isolation I've felt with chronic illness.  While some friends call, text, send cards, or drop by, others--in some cases those I thought I was closest to--have disappeared completely.

Even as I write this, I'm frustrated by humanity.  I get it.  People get weirded out by sickness. They don't know what to say. They feel helpless. They hate to see me hurting. They're busy.  They want to give me space. Blah, blah, blah.  But, for just a moment, I wish they would understand.

As I woke up at 4:22 this morning, I couldn't help but think of my friend Sandy who died of breast cancer in 2006.  Sandy was vibrant, brilliant, and amazing. By the time she passed, she was also angry.

During one visit, I remember her crying, bitter that all she thought once loved her were nowhere to be found.  "People ask what you need, then they don't do it," she sobbed as she recounted  asking someone to take her to the doctor's office.  "They said they couldn't do it and told me they'd get back to me with days they could help," she wailed. Sadly, Sandy never heard from them again.

While this sounds callous, it's not uncommon. In my own life, I've reached out to a few people with disappointing results. Just recently, I asked one of my favorite girlfriends to get me out of the house weekly (I haven't seen her since).  I've left another friend several phone messages.  Despite knowing I'm sick, despite being someone I used to talk to at 3 in the morning, she still hasn't called back.

Although it's easy to get discouraged or disheartened, I refuse to let it get the best of me. As they say, "sunlight is the best disinfectant" and the spotlight created by illness has definitely shown me who I can count on. 

Knowing what I know now, if Sandy were still here, I would do a lot of things differently. Which got me thinking.  If people knew better, maybe they would do better.  So, in an effort to help others and myself, I'm making two lists:  1) How to support friends with chronic illness 2) How to be your own best friend when you're sick (which I'll post tomorrow).

How to Support a Friend with Chronic Illness
Following is my list of things that have made (or would make) a difference during my time of healing. It's by no mean comprehensive, but it's a good place to start. 

1) Listen.  Ask how I'm feeling and just let me talk (without looking at your phone, rolling your eyes, or offering advice).  Some great questions: How are your symptoms today?  How is that impacting you?  How can I support you with that?

2) Remind me life is beautiful.  Bring me plants.  Send some wild flowers.  Email me positive music videos.  Tell me how what I've done in the past (or now) is making a difference.  Get me out and into the sun.  Make me laugh.  Do anything that reminds me life's out there and I'm still a part of it.

3) Anticipate my needs before I do.  What am I complaining about?  Is it my itchy skin? How tired I am?  My messy house?  My limited diet? The leaves in my yard?  Find solutions to my problems and take care of the details for me.  Say things like "Is it ok if I do x,y,z for you?" or "Why don't I stop by and take you to..." rather than asking general questions like "What can I do to help?"

4) Do what you promise. I know you don't know this so I am telling you. If we are meeting or you promise to do something, I am counting on it.  Sometimes, after getting the first sleep I've had in days, I set an alarm to make sure I'm awake for our appointment.  Other times, I'm waiting to take medications because we are going to eat.  These days, showering, washing my hair, or driving to meet you takes tremendous energy and can even be painful.  I schedule time with friends only once or twice per week for this reason (and I look forward to it).  Please be considerate of this and don't leave me: hanging/ditched/waiting.  It hurts more than you know.

5)  Understand when I don't.  I know it's unfair of me to ask you to do what you promise and to not necessarily do the same.  Depending on how I'm feeling, I may need to change things or I might even forget them (I sometimes don't remember what day it is). Check in with me the night before and see if I'm still up for it.

6) Check in on my spouse.  Being sick is tough on me, but it's also tough on my husband. On top of the business, which he now manages single-handedly, he does the shopping, most of the cooking, the cleaning, the dog walking, and the laundry.  Check in with him. Ask if there's an errand or chore you can do while you're out.  Take him out for walk or a game of volleyball or a movie.  Bake him cookies. Remember:  He's not only caring for a loved one, he's missing a partner and a friend.

7) Encourage me to control what I can.  Applaud my research.  Send me recipes for raw food items.  Remind me that I know my body and I need to trust myself.  Being sick requires hundreds of difficult and highly personal choices. There are no "right" answers.  Research shows patients who heal best are proactive with their health.  Respect and support my decisions...even when you don't understand them.

8)  Educate yourself.  Read The Spoon Theory.  If I am going for a test, educate yourself about it. Find out what people with Lyme Disease are going through (even if I don't have it, I share their symptoms).  Clip out articles I might find interesting and send them to me. Ask questions.

9)  Try to relate.  As a sick person, my life revolves around three things: getting better, researching what could make me better, dealing with symptoms/pain that are disrupting my life.  To you, what looks like obsession, is actually desperation to understand, control, or eliminate what's happening to me. I'm scared.  Some days, I'm hopeless.  I know you miss the old me. I know you may be sick of hearing it.  Have patience with me and try to imagine how you might feel if you were no longer able to work, get around, sleep, or control pain.  Now imagine feeling that way and having people look at you like you're annoying and crazy.

10)  Think about what you say.  Most hurtful comments?  "You don't look sick."  "Why are you doing _______?"  "Maybe it's in your head."  "Do you think you're just thinking about it too much?"  "Well, at least you don't have ________."  "I wish I could sit home all day."  "It can't hurt that much."  "Be grateful you aren't ______."  Don't compare my illness to yours. Don't say things like "I know what you mean"...unless you truly, truly do.

11) Tell me about your life.  Share what you're dealing with, what you are struggling with, let me know how I might be able to support you.  The only thing worse than feeling sick and lonely is feeling sick and useless.  Let me contribute to your life. It reminds me that I can still make a difference.

12)  Send me gifts.  Not expensive things, but thoughtful ones. Give things that keep boredom at bay: sudoku puzzles, movie gift certificates, amazon gift cards, magazine subscriptions (Health, Whole Living, Natural Health, Women's World, Somerset Studio®).  Or give things that I need or might want to try:  fresh, organic fruits and vegetables, raw almonds, prepared gluten free, sugar free, and yeast free meals, gift cards to Publix or Whole Foods.

13) Tell me you love me.  Write me love notes.  Sing me songs.  Remind me I'm strong.  Admit you don't know what to say.  There's nothing for you to fix and I don't expect you to have the answers.  Just check in with me, read my blog, and remind me that you care.

Altered Today: Asking for support and letting others know how they can give it.

Day 86: What's Your Plan B?

 

TODAY, I'm worried about money.

With that in mind:
a) I'd better get better...quick
b) My husband needs to find/create something that covers both of our incomes
c) Unless we win the lottery or some other miracle occurs, we're in trouble 

Although my worry meter hasn't shifted completely to high alert, I can see the writing on the wall.

Out of network doctors + $3,000 insurance deductible + hundreds/thousands in uncovered medicine/herbs/organic food
+ no work = bad news for our bank account and financial future.

Secretly, I weigh out the potential options:
-Get better or well enough to function
-Grin and bear it 
-Move in with my mom
-Sell the house
-Bankruptcy
-Take out a loan

Except for the first one, none of them sound good (sure hope this oil pulling thing's a winner...lol).
Regardless, I am now confronting, headfirst, one of my greatest fears--having to count on others.

Let me explain.

-In second grade, when I wanted extra money for pizza, I started a shell game with L'eggs' pantyhose containers and charged fellow students a quarter for the chance to win matchbox cars. 

-When I was 12, I kept a jar of peanut butter and a list of stores that offered free food samples under my bed... just in case I wanted to run away from home.

Does that tell you anything about my personality? 

I am resourceful.  I am a survivor.  I am an "8" (which in Enneagram speak means my Basic Desire is to protect myself, ie: be in control of my own life and destiny).

free enneagram test 

This doesn't mean I don't ask for support or request things from people.  But it's calculated.  It's risky. And I always have a back up plan in mind. 

As a healthy person, being self-reliant is good--sometimes even admired. 

As a sick person, being self-reliant is devasting--how can I possibly handle things when I feel so unpredictable?

As I continue along this journey, one thing I know for sure: It does no good to worry.  So, I plan for the worst, but hope for the best...secretly hoarding pistachios and Vitamin D in my pocket.

Altered Today: Being Open to Miracles that are not of my making