Alter Everything

Day 320: Time Flies

Lately, I've received several emails, messages, and texts. "Where've you been?" "Are you ok?" "Miss you." I feel the same way...missing, somehow disconnected.  I can't really say where the time's gone. I'm not out doing the Hustle. I haven't been napping (except this afternoon). I'm not spending my usual time in the sauna, sorting meds, dry brushing, blogging, juicing, on Facebook.

I am behind...on everything (phone calls, dishes, art journals...you name it).

I guess, realistically, you could say, I've been at the doctors. On average, I have 4-6 appointments a week. With travel, that takes between 12-15 hours. Add on labs, colonics, lymphatic stuff, massage, crazy foot baths...another 5+ hours...gone. 

It all feels very consuming.

When I get home, I usually just stare into space.  Too tired to cook, I eat out often.  When I can muster up some extra oompha, I go to a movie, have Angel wheel me around Disney, get some fresh air, or visit with friends.  Yesterday, in between sips of tea at Starbucks (a rare outing), I caught up with two friends.  One just opened a bakery (you should totally visit it). Another just had a baby.

"Are you working?" one asked.
"Are you better yet?" the other said.

That's also exhausting.

In between, I'm daydreaming...about taking a class, singing lessons, working, improv, exercise.  It's too soon for those things.  Instead, I'm settling for Solitaire. Still, it's a good sign I'm thinking about them.

Hard to believe it's already October.

Altered Today: Playlist, Thoughts for the Future

Day 303: Happy Kathy

What a 1 looks like on the symptom scale.  I haven't felt this good since March 7, 2011.


The DMV Lady: Did you bring all your goodies with you?
Me (after already waiting an hour): I need goodies?
Her: Yes. To renew your license you need a) Your Passport or Marriage License,
b) Your social security card, and c)  Two bills showing your home address...not a PO Box.
Me: OK. (--Smile--).

All around me, people were melting--exploding from the breakdown caused by unpaid tolls, forgotten IDs, non credit card acceptance, and short lunch hours. Me? I was tickled....thrilled to be up, grateful to have on makeup, and combed hair (that's right, shower, makeup, and hair done in the same day).  Who cares if I had to run back home??

   Humming, I drove through traffic, dug out my paperwork, and returned.
Before that, nine months of expenses sorted.
After, an amazing Thai lunch and an email to 1-800-Flowers customer service.


 
 


 

 

 

 

 

 

 

 
Off to do something wonderful. XOXO

Altered Today: HEALTH!!!!! :) And how I feel about minutia...

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 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 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 198: Fibromyalgia or Lyme Disease

www.artbywicks.com

A while back, I read a great article on ZenfullyDelicious--an excellent, positive resource for anyone dealing with chronic illness.  It was about Fibromyalgia and specifically caught my attention because of the title...Fibromyalgia: Is It All in Your Head?

When I read it, I was having a hard day; feeling misunderstood, alone, trying to sort out who I am now inside this world of being sick so much. I was also questioning my Fibromyalgia Diagnosis...something I had just been told I had from the Cardiologist.

As I read through the writer's symptoms..insomnia, brain fog, painful limbs, and crying uncontrollably...it shook me to core. "This sounds like me," I thought. "Is it possible she has Lyme Disease and doesn't know it?" (After all, most Lyme patients don't recall being bitten by a tick or get the tell-tale bulls-eye rash).

Tentatively, I posted a comment on her blog.  I didn't want to lecture (after all, she's been struggling for nine years so who I am to say), but I did want her to be aware: Fibromyalgia is often misdiagnosed for Lyme Disease and vice-versa. They share the same symptoms, have the same waxing and waning cycle, cause the same misery. What if there are a whole slew of Fibro people out there who aren't seeing the right doctors or getting the right tests done?  The possibility just makes me sad nuts.

To help, I've put together a quick list of how my LLMD (Lyme Literate Medical Doctor) determined I have Lyme disease. It is by no means comprehensive, but for anyone questioning their diagnosis or looking for a cause for it, it's a good place to start.

My Lyme/Fibromyalgia Journey...

Before being diagnosed with Chronic Lyme Disease, I was told I have Fibromyalgia.  I also technically had two negative Lyme Disease tests.  A lot of people don't realize (especially non Lyme Literate medical doctors) Lyme tests come up negative for a lot of reasons, but this doesn't mean you DON'T have Lyme Disease (this is why Lyme is a clinical diagnosis). A couple of reasons this happens...
 
1) Lyme tests measure ANTIBODIES...not the actual disease and often the sickest folks don't make antibodies until starting treatment.
2) Sometimes Antibodies cling to viruses...so there are not enough free floating Antibodies available for detection.
3) The lab being used for testing is not sensitive enough or looking at enough strands of the disease to be accurate.

Other reasons can be found HERE.
 
Luckily, by the time I got tested, I was seeing a Lyme Literate Medical Doctor...so he knew what markers point to Lyme...rather than just relying on a CDC positive lab finding (which can be elusive).  Based on that, below are the things I would recommend to any Fibromyalgia patient to rule out Lyme or Tick related Co-infections as the root of their problem.
 
1) Find a LYME LITERATE physician...regular doctors don't understand this disease or know how to treat it.  Note: Run from anybody who tells you Lyme is "easy to treat and difficult to catch." Other phrases that should send chills up your spine: "Lyme doesn't exist in _____ (insert your state here)."  "If you don't remember getting bit by a tick or don't have a rash, you can't have Lyme Disease." "Lyme is easily fixed with a month of Doxycycline or __________." (That only applies when detected early and is only applicable if you don't have co-infections...which is very rare). 

NOTE: You need a Lyme expert here...one who is currently treating and helping Lyme patients...not one who only knows about Lyme from med school (To find out why this is SO important, watch the movie Under Our Skin for more details). 

2) Have them check your C4a levels and CD 57 levels...both are done by blood draw and are helpful indicators that Lyme might be present.  (NOTE: C4a is usually done by Quest. If done by LabCorp, it must use the following code and have directions as noted C4a - LabCorp Code# 857334 Order Directly from National Jewish Medical & Research Center (NJMRC), Denver, CO).

3) Get tested for the following viruses (also a basic blood test): Epstein Barr, Cytomegalovirus, HHV6, Parvo, M. Pnemoniae, C.Pnemoniae.

4) If you've tested negative for Lyme through a regular lab (Labcorp, Quest), retest through IGENEX (the best Lyme Lab in the country) for Lyme Disease.  Also, test for tick-related co-infections:
·  BABESIA
·  EHRLICHIA
·  BARTONELLA
·  RICKETTSIA
 
FYI: The co-infection test is finally the way they detected my disease. I had all of the factors....all of the symptoms...was positive for many of the markers (disrupted c4a and CD 57, high viral loads, positive on a couple of Lyme strands).  When my Ehrlichia co-infection test showed up positive, they knew they had it (thank God I was with a Lyme doctor...my regular doctor would have stopped looking after the first round).
 
Anyway, this is all of the stuff I wish I would have known months ago. If I did, I'm sure I wouldn't be half as sick as I am now.

With love, health, and healing... 

Altered Today: Reaching out to my fibro friends, making a difference

Day 196: We're Not Going To Take It

It's a bird. It's a plane. No.  It's a bunch of Lyme patients and we're pissed off and ready to rumble. For three weeks, we've sat, we've waited, we've agonized as our new "IV" nurse struggled to learn the art of clean/painless insertions.

I think I was the first victim. To be clear, I'm not the easiest stick (small veins), but this was completely unbearable.

Stick #1
(nurse) Well, that didn't work.

Stick #2
(nurse) Boy, you're tricky.

Stick #3
(nurse) Hmmm...let's try it this way.

Stick #4
(me..screaming) GET IT OUT! GET IT OUT! GET IT OUT!!!! (As she punctured my vein and the IV hose squirted all over everything...including inside me).

Victim #2--Cindy 
Victim #3--Lori
Victim #4--Lauren

Like lambs going to slaughter, we all watch in horror as she heads in our direction (Note: she won't touch me again since I freaked out, but I've seen others suffer and I am on a mission to save them).

Tonight...a plan is cooking to a) Find a guy who knows a guy (insert shrug and Brooklyn accent here) or b) Launch a massive complaint effort with the doctor tomorrow (since I am not violent, I will probably go this route, but there's no telling...wink, wink).

Wish us luck!!

Altered Today: Plans for a painless IV future, hair color, dinner (Note: I ate non organic AND a piece of bread today...holy camole...cheating on my diet, not napping, craving things, feeling scrappy, singing in the shower. Is it true? I really am starting to feel better).

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 169: A Day at the Beach

OK. I didn't really go to the beach today...at least not physically. I did go there mentally, however. I also pretended to be at a rock concert, on a ride at Disney, playing Ms. PacMan, in a tanning bed, floating on a raft, doing yoga, and in the bath.

Why all of the pretending??!?!?

Well...I would LOVE to tell you I found the secret to pain management; using visualization as a form of healing. 
The truth? I was in an MRI machine, trying to avoid having a panic attack -- a new experience for me.  I am typically a champ with medical testing. This, however, was a whole new ball game.  

Now, if you've never had an MRI before, you may think "What's the big deal? You just lie on your back and they slide you into a big tube. Right?!?!?" 

Yes.  That's what I thought.

What I didn't realize is before they do that they enclose your head in this sort of plastic face mask/astronaut shield. THIS is where I had a teensy, weensy bit of a problem. 

We started out fine.  Ear plugs in. Head cupped with two styrofoam bricks.  Neck wedged firmly in some kind of contraption to keep me from moving...kind of like a boom box packed in styrofoam. 

The tricky part came when they locked that "sheild" over my face (mine was all plastic, not with bars like the one shown).  Suddenly, I couldn't catch my breath.  The room became very, very hot.  Everything was spinning.  I felt like I was going to pass out.

"You alright???" the tech asked....sensing my panic.
"No...take it off." I said. "Sorry, I'm feeling very claustrophobic."

For a second, I tried to steady myself.

"You could get out if you had to," the tech explained.  "If you need anything at all, just squeeze this ball."

"Does THIS compartment thing, still have to go in there?" I asked, pointing to the chamber behind me.

"Yes," she said.

"Awwww...F*k!" I said, catching us both by surprise.

After a few deep breaths, I tried again; this time asking if they could put me in the tube so I could see what it felt like. To keep from throwing up, I breathed in and out while some guy talked and tried to calm me down through a periscope. It felt like I was looking through a view finder or through some strange rear view mirror. "See, you can see me through here." he waved through the peep hole.  "Just start." I interrupted.  I could hardly stand it. I felt like I was drowning.

To avoid panicking, I shut my eyes, breathed in through my nose and out through my mouth. Then, I started counting backwards by three's from one hundred.  100, 97, 94, 91, ... Then, I pictured myself at an Ani DiFranco concert. Then, I pictured myself lying in the sand, etc, etc.

The air was nice. They kept it circulating...which was a good thing. In between images, they reassured me and told me how much longer I had...which was thoughtful, but made it hard to pretend I was elsewhere.

After five minutes, I got the hang of it. I was even able to incorporate the noise and talking into my daydreams...which was a blessing. Thankfully, it only lasted 12.5 minutes.

All in all, I would not call it a fun experience.  My head is pounding from the noise. Still, if it provides more pieces to the puzzle, it's worth it.

PS In case you are wondering, here's what it sounded like.

Altered Today: New tests, hopefully some kind of explanation for my speech/headache/walking problems

Day 156: Gone Fishin'

I don't want to write today. I have nothing to say. No insights to offer.  No positive thoughts to spin. 

NOTHING.

Honestly, even though I just woke from a four hour nap, I want nothing more than to curl up in a ball, put my knees around a pillow, and go back to bed.

In fact, I wasn't even going to write today.  I mean, does it even really matter?  Sure, you might wonder what happened...eventually.  But really, Day 156...Day 39...Day 2.  Aren't they really all the same? 

"I'm taking a vacation," I said to my husband.
"You can't do that," he reminded...you promised yourself you would post every day (good, bad, or indifferent)....even when you don't feel like it.  He's right. I did.

Still, today, after my Neurology appointment and explaining my symptoms for the umpteenth time, this river's dry. So, rather than making you endure me (which would be VERY repetitive and whiny), I thought I would give us both a break and let you hear from a new friend that's been living on my back porch since yesterday.  Apparently, she has a lot to talk about.  Hope you are well...and if you need a new friend, let me know.

 

  Altered Today: Running a pet shelter, new doctor, new med dose, long naps, parents in town.