Alter Everything

Day 211: The Race To Nowhere

                                                                                     photo by twotoneatl via PhotoRee
                                                                       

It's official; I have a double chin. Not like that's news...I've been heavy for a while. But, for some reason, today, it's really bothering me.

"Do I have to feel like crap and look like crap too?" I cringed, when I saw one of my tea party photos.

My next three thoughts were just as disempowering:

"You have friends that can't even sit up and you're worried about your chin?"
"At least your body's working. Be glad it's supporting you."
"Really, with everything going on, you're gonna worry about how you look?"

....and on and on and on.

They are all some version of the same conversation: "I should be this, not that."

It's not a new thing; I've been "shoulding" on myself for years.

I should be more successful.
I should live somewhere else.
I should be more grateful for what I have.
And, most recently, I should be getting better faster. And, if not, I should at least be skinny...especially with my boring diet of nuts, beans, meat, veg, fruits, and cheese.

The problem with "shoulding?" It traps me in a world of something's wrong...with me, you, life, everything (and, you know, I shouldn't be wasting my time there).

So, today, rather than obsess about how I should or shouldn't be feeling or what I should or shouldn't be doing about it, I'm giving myself a gift: acceptance.

I have what I have. I don't have what I don't have. I am where I am. I'm not where I'm not.

Moving on...

 

Altered Today: Compassion, love for my humanity.

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 208: Be Very, Very Quiet...

Shush + Dark = Happy

Altered Today: Off Electronics, Private Suite for IV Treatment, First Time Driving
in the Rain with a Migraine...quite possibly the worst idea ever.

Day 207: We're Not In Decent Places

Sam: "It must be getting near teatime. Leastways, it would be in decent places where there is still teatime."
Gollum: "We're not in decent places."

25 days -- that's how long it's been since my last migraine.  After months of symptom tracking...I can predict when a storm's about to hit.  As I type, the front's closing in...this one attacking my head full throttle. 

Of all of the symptoms I've encountered with Lyme, the migraines are the most debilitating. I'd prefer any pain to not thinking or seeing straight. Just the thought of the next couple of days makes me anxious; especially since I've just added my fifth antibiotic to my daily routine (something I know can cause some scary complications).

According to my Neurologist (and MRI), I have T2 Hyperintensities.  That means I have lesions in my brain...something pretty common in Lyme patients. For months, at the beginning of my illness, I thought I had sinus infections (at least that's what doctors kept telling me). Luckily, my ENT investigated further.

"I think you are having migraines," he said, after reviewing my symptoms.
"Really???" I questioned; shocked no one had ever considered that.

That was last July when headaches were bad, but manageable.  Today, they take me out for 2-3 days ...unable to lift my head, in bed, feeling woozy, crying from pain, repulsed by light/smells/sounds/computers/tvs, with vision that very much resembles this photo.

Gratefully, I prepared this month.

• new face mask...check
• dark room....check
• no obligations for the next three days...check
• party planned day before the danger zone...check

Many people don't realize Lyme ebbs and flows in cycles...something you can plan for if you pay attention.  For me, the third and fourth weeks are the worst; I've been told that's when spirochetes multiply so antibiotics kill more during this time (FYI: When spirochetes die, they release toxins faster than your body can eliminate, causing pain and symptoms). As we speak, the computer monitor's turned from clear and inviting to painful and caustic.

Cover me, boys. I'm going in...

Altered Today: New friend to cuddle (thanks Judy), sweet eye mask (thanks Melissa), plan of attack.

Day 206: Time for Tea 2011

Lots to experience at today's gluten free/sugar free tea party.


 
Food...

Friends...

 
 

Fun...

Love...
 


I am tired, but it's good tired; the way you are when you trade a day for something worthwhile. Thank you Debbie, Denise, and Angel for making this possible and thanks to everyone who attended. This was one of the best afternoons I've had in almost a year.

I love you and miss you already.

XOXOX

Altered Today: Memories, Friendships, Well Being

Day 205: Making Friends with the Moon

4:12 am. Really???? What can I say. Lyme has impeccable timing. It doesn't care that I have lots to do tomorrow today, that people are coming over on Saturday. It wants to be up, up, up. So, it wins...at least temporarily.

Rather than lie in bed and resist, I will trick it and make myself useful.  Sometimes you have to use reverse psychology on Spirochetes (make them think you want to be awake when you really want to sleep and vice-versa).  Once it knows I am being productive, surely it will switch into exhaustion mode. 
For now, I've got plenty to keep me busy:

-paper chains
-research
-medical tests (knocked out one...phew)
-emails
-organizing
-blog post (two things done...even better)
-other awake friends

I've never tried crafting at 3:00 am before, but I'm willing to give it a go. Is that a bad idea?

Altered Today: Productivity, Hours of Operation, What I Do When
I Have Insomnia.

Day 204: Lymphomyosot -- Miracle in a Bottle

For a while now, I've been dealing with an awful problem: the pain on the inside of my right knee is excruciating. I can't really describe how it feels...it's not in or around the knee cap, more like on the inside of my leg. Kind of where number 4 is on the diagram below, but lower and inside further (if my legs were together, the dots would be touching).

It's so intense, I can't squat or get up without assistance (kind of like someone has my knee in a vice). It also profoundly impacts the way that I walk (like a 90-year old).  Many days it has reduced me to tears.

When I told my doctor about the problem (who's also a Naturopath), he got really excited.

"Lymphomyosot," he practically shouted from his chair.

"Lymph-o-what?" I answered.

He then went on to tell me how the pain is caused by inflammation, how my body is having difficulties processing toxins, how this will help get the Lymphatic system going again, and on and on and on.

According to a research study I found, he's right.  "Patients treated with Lymphomyosot suffer from very different types of inflammatory or infectious conditions and the diagnoses tonsillitis, rhinitis, sinusitis, bronchitis, lym-phadenitis and non-specific infections."  Out of 3,512 patients, "good and very good therapeutic success were achieved in the great majority of cases."

Hopeful, I took a dose Tuesday night, another Wednesday am, and another this morning (convenient and undetectable in a glass of water). The results have been nothing less than miraculous. It is easily the most effective, most amazing, most helpful treatment I've had to date.*

*This is my personal experience and should not be construed for medical advice. To find out if Lymphomyosot is right for you, consult your doctor.

Altered Today:  Dancing around the living room.  You should see my moves. I'm a Lyme All Star.

Day 203: Stupid Trixie Lymes

                     Sick Kathy = Gollum                                                                              Healthy Kathy = Smeagol

At least that's the case, according to my husband (If you haven't seen Lord of the Rings, get a brief primer here).
The remark wasn't meant as an insult. He said it after I made a comment this morning.

Me (in Smeagol-like fashion): We thinks we can do more than we can (upon having to rest after wiping out the dog's crate).
Him (being playful): Stupid Trixie Lymes, we hates them we do.

For a while, we joked and back and forth.

Smeagol: "But we likes the pizzas, yes our precious!"
Gollum: "NO!... WE can't HAVE the pizza, NOBODY can have the pizza."

And on and on it went. 

In reality, it's not that far off. I am often conflicted between the two sides of me.

On a good day: We can walks. We getting better. We are.
On a bad day:  We dying. We tortured. We can't go on.

Let's hope these new meds do their thing (free, free...let Smeagol go FREEEEEEE!!!!).

Altered Today: Dosing, Party Provisions. Hope you can make it Saturday. Would love to see you.

Day 202: BE Happy...

Graphic from Hil's Blog

My friend Melissa is so great. Despite dealing with her own Lyme-induced mayhem, she always takes a minute to check in with me.  Having been up since 5:00am, it was nice to hear from her this morning.

"Sorry about the tremors," she said, after I told her about my latest shaky-shake symptoms.

I laughed for five minutes. 

I don't know why it cracked me up so much.  I think I was struck by the ridiculousness of our situation(s)--constantly discussing the 4P's (pills, pain, poo, and protocols).  Briefly, we chatted about the day's upcoming adventures--Lab Draws, IV Therapy, Doc appointments--wished each other luck, and went on our way (with smiles).

It was a good day....one made even better by a positive attitude. The doctor was happy with my progress (and symptoms). I made a few people laugh. The yucky IV nurse has been fired.  More drugs were added to the routine. And, I'm still standing...almost in spite of myself.

Most importantly, I learned something really valuable; If I can bring joy to this situation (and I can), I can bring it to just about anything.

What can you bring joy to?

Altered Today: Worries, Focus, Attitude, Spirit, Treatment, IVs, Goals for the future... redefining what it means to be sick.