January 2013 archive

Aegri Somnia Vana*

to the land beyond the sea

Always,
the fragrance of the earthen potpourri
    walking down the hint of a path,
    erased by impatient feet,
                      to the sea.
The forest marched down
to the waters edge
    clung to slivers in the severe wrinkled face of the cliff, and
    on islands the tide shaped;
Yet couldn’t,
   wouldn’t press,
   even a gnarled toe
into the rocky sand-shore,
    to feel a shy wave
    glide forward,
    reach around toes to heals, and
    tug you in closer to play.
How lonely!-
    to only drink
    the windward rains;
only feel briny breezes run wild fingers
    through needle-tresses,
only smell the suns reflection, scattered from every
    glistening pebble
    bull kelp, fallen feather;
To watch, and wait, at the precipice of a wonder;
To be rooted to this rugged, cumbersome land
    and never to touch, taste,
    one teardrop
                       of the Pacific’s compassion.

May your tears always find a path home to the sea. ~

Olympic Mountains

Written on November 5th, 2012

*Translation: A sick man’s empty dreams, a line of Horace’s

Dream a Little Dream of Hope

I knew as soon as I posted about my icky abdomen year that things would start to look up. You know that feeling? When you are struggling with a task and then open your mouth to ask for a hand, and then all of a sudden you solve it? Beautiful, isn’t it? This is a new year, a clean slate, a season of healing. And I hope it is beginning for all of you.

There have been a lot of positive changes for my tummy, thanks to a lot of new factors:

1. Magnesium oxide. Pretty sure this is code for ‘nature’s-feel-good happy-calming’ drug. Seriously. Magnesium is amazing. This kind of magnesium particularly targets the digestive tract to fight the babesia hanging out there.

2. Aloe Vera Gel. Does it taste like Shrek snot? Absolutely. Does it help your tummy? You bet. Pinch your nose, eat something yummy afterwards and trust me it will be worth it. Coats your stomach, which is great for when you have to take all sorts of nasty pills which hurt your stomach lining (or have an ulcer, like me).

3. Nucca chiropractic. Essentially, it’s the realigning of the atlas (near the top of spine in your neck), which if out of alignment, makes the ‘signals’ coming down from your not as clear to the body. A nerve problem could have been causing my Gut Palsy, so hope it continues to help! After the first treatment, I felt like a weight had been lifted off my shoulders, and the energy/chi/life force/energy pathways on my left side, which had been blocked for so long, were balanced (yay!).

4. Soup diet. Just for a few days. I don’t like to think it helped, but who knows. Mum’s have this pesky habit of being right ;).

Tasting is believing.

So all told, my tummy (and the body connected to it!) is feeling much better. Still a bit uncomfy, but it’s feeling well enough to eat cookies :). I made the best cookies in the whole world from “Real Sustenance” blog. They are made entirely from nut/seed flour, and a sugar-free, soy-free, and wheat/gluten-free anddddd vegan. I know. Sounds like it might be free of yumminess too, but let me assure you that is not so. I used walnut flour, which I made myself in a food processor, soy-free margarine (but will use less next time. walnuts are oily!), coconut palm sugar, almond milk, and Enjoy Life Allergen-Free chocolate chips. Flat, crispy little golden-brown cookies is the result. Perfection! Can’t wait to bake some more :D.

I wanted to share with you a collage I’ve just finished creating. It went together so quickly. Sometimes I have a very strong vision when I begin a collage, and I find all the images I want quickly, and they all fit together in a beautiful way. And sometimes I can’t find the images or words that I’d like, and have to go about re-envisioning my collage. I wanted to create a rainbow, dream-inspired collage, as a gift to Help Fill A Dream Foundation for all their amazing support and love over the past 4 years. I hope it will inspire whoever comes to their office to open their hearts, and to dream of hope. <3 br="br">

Mixed Media Collage: magazines, calendars, 1888 Encyclopedia Britanica

Fresh Beginning

And with these words, I break my blogging hiatus.

There, that wasn’t so hard. But still, I can’t really explain why I haven’t been writing. I suppose, like I’ve always said, I handle most medical things really well, unless then involve my abdomen. And this has been the year when all everything has decided to sporadically go wrong in my tummy. It began with pancreatitis, and I’m really hoping it is ending with Bell’s Palsy of the Gut aka Frozen Gut Syndrome aka OUCH.

This was what I wanted to happen:
Well, it’s been 2 weeks since I’ve been out of hospital, and all the pain in my pancreas has vanished! It’s amazing what a little starvation will do (that’s how you treat pancreatitis). The people at the hospital were a little frustrating, because they kept hurting me more by trying to ‘help’ me, despite warnings of my high level of pain, latex allergy and chemical sensitivities. I guess I’m officially all better now…yay! I think I’m going to bake some gluten free brownies to celebrate. Ta ta for now!”

The pancreatitis problem was solved by 3 days of no food and water (seriously. nothing.). I’m going to be honest; pancreatitis was excruciating, a kind of physical pain that is difficult to block out, although I experience the same intensity of pain daily. Essentially, my pain load doubled over the course of a few days, which wasn’t fun. It hurts to bend, stretch, move, sit up, drink, hiccup, cough, sneeze (especially painful). Please take care of your pancreas, which is located right beneath your belly button. For the 2 days before we went to ER, it was incredibly painful and I basically stayed in bed all day, but figured it was ‘just a Lyme thing’, even though something in my gut (no pun intended) told me it was otherwise. My advice?: don’t wait if you think there is a slight chance that something could be seriously wrong. It could be a Lyme thing, and something seriously wrong. The ER doctors will probably goggle at your prescription meds and raise their eyebrows at your diagnosis, but medical intervention is worth it. Loosing your pancreas is not worth skipping the 8 hour ER wait (and on the bright side, they will get you in a bed right away if you have pancreatitis. fake yay!).

Then I had a few follow up appointments, and now have to be careful that I don’t get it again because it can be a chronic condition. I really want to keep all my squishy bits, thank you very much! I still have all my organs, fyi. I was seriously weakened by the intense physical pain/trauma of my inflamed pancreas, and the dehydration and lack of food while in the hospital. I felt lousy though, and I never felt 100% after the pancreatitis. I guess I thought something else was wrong, in the back of my mind, but what I voiced aloud was the idea that I was tired and recovering. I have not been on IV antibiotics since then, because there is a good chance the IV med I was on caused the pancreatitis, and I don’t want to go through that again!!!

It was several months later when I began to develop severe abdominal pain. Different place, though, more to the side, and higher up. So it was a trip to ER for me, and after hours of literally crying with the pain – I’m usually a pretty tough cookie when it comes to pain, even the pancreatitis, but this was intense. It felt like there was a rock stuck inside my body; scraping-poking-piercing intensely. After hours, I finally asked some other nurse if I could lie down in one of the many empty beds, because for some reason my nurse judged I didn’t need one of the beds that has been empty for the last 5 hours. Nothing visible in scans, but all in the same casual breath, the doctor informed me I might have passed a kidney stone, and that I had a impressively impacted colon. Those sort of adjectives coming out of a doctors mouth worry me. His advice was take laxatives, many kinds, for a month, and then have another x-ray. Whoopee.

It was a very bizarre month. Laxatives makes it feel like you are scraping nails down your intestine walls. I was not hungry at all. I felt full, in fact. So full that I was practically in tears at the thought of a bite of toast, a sip of water. And still, the painful urination was always there, but would intensify so sharply and suddenly, and then last for hours, lessening gradually. I’m not sure whether or not I was born with medical intuition, or if I have honed these skills during my illness, but my mum and I both get clear ideas of what is going on. I knew, without question, I was experiencing kidney stone ‘showers’, many tiny stones, that were being missed with all the dipstick tests. I knew they would be missed, each time I patiently gave a sample, because the pain was not at its peak. High pain = passing stones, wouldn’t you think?

Laxatives by the handful. And nothing worked. I wasn’t constipated though, that’s the weird part. My stomach was bloated and hard and painful, but I was still able to go to the bathroom, and the laxatives weren’t doing whatever they were supposed to be doing. Months went by, and I’d keep going back for x-rays, and yup, my colon was still impacted. It was around this time that my urinary pain began to fade away. I tried to explain to each doctor I met the unsettling sensation I had that my abdomen had ‘turned off’, that it wasn’t working, that food was just sitting in my stomach all day undigested. I am very in tune with my body, and can feel the gentle buzz of peristalsis (muscle contractions which move food) in my belly. It’s a sense of motion or activity, of gentle movement, and energy in my abdomen. All of that was absent, my tummy had frozen, and I couldn’t convey the importance of this to my physicians.

Eventually, we saw a doctor at the hospital, the guy in-between your GP and being admitted to hospital…a quick-solving-patch-em-together-and-get-them-out-the-door sort of clinic. He tried to patiently explain that somehow, my impacted colon and painful urination were one and the same problem. I’m not a doctor, but I’m pretty sure those are completely separate body systems, with their own tubes and pathways. And the pain of each was very different and distinguishable, as I kept reiterating. Kidney stones are a very specific pain, a pain which wraps around your body like a tight belt, a squeezing, a sharp ‘rock like’ grating and a pain in your kidneys and ureter (the tubing that runs from your kidneys to your bladder), a pressure. This was very different from the dull ache and pressing pain in my abdomen generally.

At this point, my colon was so impacted, that you could see bulges visibly under the skin of my abdomen. Pressing on my abdomen, even lightly, you could feel hard lumps. It was disgusting. And painful. Painful to move, breathe, twist, stand, walk, lie down. I didn’t want to eat, I wasn’t hungry, and still I was being pumped full of laxatives. Nothing was helping. My colon was impacted for months, and by the end of my laxative regime, it was still only half solved. I was fed up with laxatives though, because they were just not working.

So about is about 6 months after my pancreatitis, and on-going colon problems, I began to experience more intense upper abdominal pain, an area previously void of pain. Several months later we figured out I probably have an ulcer. The medication for ulcers helped within a day, and now it hardly bothers me.

I feel like I could write a “12 Months of Abdominal Pictures” song.
In the first month of pancreatitis, my doctors ordered me: 1 ultrasound and a CT of my tummy;
In the second month of colon troubles, my doctors ordered me: 2 X-rays, and we waited for another ultrasound;
In the third month of colon and kidney pain, my doctor ordered me: 2 types of laxatives, 2 more X-rays, and we were still waiting for another ultrasound….
In the sixth month of colon and kidney pain, we finally got in to see, my geneticist, who order an MRI.
In the 9th month of colon and kidney pain, we finally had, my Abdominal MRI, … 3 types of laxatives, 2 X-rays, and an ultrasound for me.

Okay okay, you get the idea. I was zapped a lot, and developed favorite X-Ray clinics. Blah blah blah.

A few weeks ago, we finally got to see Dr. Marra in Seattle, my Naturopathic Lyme Doctors who’s saved my butt more times than I could count. Bell’s Palsy of the Abdomen is very common with Bartonella, and involves just what I described: part of all of the digestive system freezing, stopping moving, stopping digesting. It apparently has to do with a nerve running to your tummy. If you want to read more about it, read Dr. Virginia Sherr’s article about it. I started taking magnesium oxide, which in just a few weeks has helped immensely. No more sort-of constipation, less abdominal pain. My abdomen isn’t puffy! A holiday miracle :D. Yummy pies and cakes here I come. I want to talk more about all the awesome things I’ve been doing, but that should be a separate positive post.

Happy New Year to you of health, peace and joy!

2013 Rhapsody, in A Major

A year of sailing seven seas, internal.
Year of the spirochete, infernal.
Mortal heart of a child, eternal.

Girl + Infection = Outcome Unexpected

Girl + Infection = more pills than Lego pieces, per capita

Rectangles, round, ovals, gel caps,
    pasties, sublinguals, compounded, and tablets.
    (to navigate the bottles, you’ll require maps!)

Yet…

I’ve swallowed more handfuls of pills
    than fears.
I’ve dripped more drops of medications,
    than tears.
I’ve flown beyond this body,
    but always come back.

If life = chronic infection:
    hold close the light: it’s more illuminating than blackness
embrace love: let it heal and guide you
    follow you heart, to your path
lead with hope, and courage will follow
    find this moment, and you’ll receive the present
trust in happiness: it never left
    welcome life, your old friend
live in your life: you’ll discover it’s waiting

open your arms, and embrace your future
open your mind, and wisdom and perseverance will arrive
open your heart, and love will fill it.

The beginning of the journey never promised
    a fairy-tale ending,
But
    the truth? At the end of five years?

Girl > Infection.

A note: This poem came to me this morning while watching the clock change from December 31, 2012, 11:59 PM to January 1, 2013, 12:00.

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