This is a test of the peripheral nervous system

Sudden shift in plans! Spin around travel schedule! Week long family vacation to Arkansas was thought to occur NEXT Friday!!! It's now 11:27 am and I learn we are expected there today (what?)..... that's a 14 hr drive and and and....... we are leaving before sunrise tomorrow. Yeow!!! My rest mantra is being tested, chewed up, and spit out..... pant pant pant. OK, get a grip, this a test, this is only a test, how hard could this be? We get there when we get there.

So look forward to next week's reflections on 14 hrs of family driving on a Saturday (and back), a week of over excitement with in-laws in confined quarters, and and and..... I got to go lay down.

New research?

Some interesting research has come my way. It points to hemochromatosis (the most common inherited single-gene disorder in people of northern European descent, 1:300) as the possible underlying cause of Hepatitis C problems in otherwise healthy bodies. Those with hemochromatosis regularly absorb two to three times as much dietary iron as normal persons, which eventually harms every major organ, particularly the liver, pancreas and heart. The theory follows that the Hep C virus may not be such a devastating issue (except for being contagious and bad news on a compromised immune system) if the body wasn't already stressed/damaged by the uptake of too much iron, and that treating only the virus may miss the main problem and lead to more health issues in the near future. The study continues to say that a thorough family history is one key to diagnosis. My history includes an uncle with Hep C and cirrhosis, and a father with high liver enzymes but no virus or other known cause. There's a specific panel of blood tests needed to correctly identify the body's iron level and an easy rice bran extract to help eliminate excess. I'm going to look more into this and bring the info to my next appointment.

check out mercola.com, search for iron toxicity, or hemochromatosis.

Humm, we'll see.

Slow curve up (or down)

Trudging in new territory, not much wisdom in the books about how to let a person lie. So many things to do, so easy to justify their importance over your own. But the point of diminishing returns has officially arrived: "doing more" now means not doing it very well and bringing a bit of misery to others. No thanks.

So, time to take it all seriously and celebrate the small steps: today, I savored my coffee longer and did not put the laundry away. Humm... definitely not radiant yet.

Action junkie

How did my first day of rest go?... well.... After two hours of facilitating home school I was still feeling pretty relaxed. Despite the head pounding, I had woken with a new sense of optimism. Can't quite explain the inner release gained from yesterday's proclamation: I will rest. Then I got a bit carried away. The floors needed to be cleaned (really), the sink was full of dishes, laundry to wash, and clutter.... everywhere. It's now 3pm, I've had two major dizzy spells, yelled at the dog, barked at my daughter, I'm exhausted and completely undone. Great.

OK! lesson becomes more specific: How do you utilize the action junkie, passion princess qualities (because they are not going away) to ensure adequate rest... or do you just need to tap into other wilted in comparison qualities, or do you blah blah blaa blue blee.... yeah.. I need to go lay down that's what.

To all my friends and family

For the next six months, do not expect me for dinner. I maybe there, but pay no mind if I'm absent. I am resting in the back room and will no doubt, arrive refreshed, exuberant, and joyously social when the time is right. From here on out, I give myself the right, the privilege, the duty to say an honest yes, no, or maybe. If there's any worry about me becoming a lay-about or taking malicious advantage of my family or friends, then you don't know me very well and you better get over it.

I've been fighting a losing battle for long enough, struggling to be up when down is better, buying time with diminishing returns, closing my eyes to the obvious truth: I just need to rest. Not necessarily alone, but definitely protected. This is my lesson to learn, anyone else may have a different one, under different circumstances, mine may change. It's taken six long months of chemical infusion to reach this edge, this is big for me, it's time to take the plunge.

*special thanks to my best friend...you always seem to know the truth no matter how hard I hide it from myself. Thank you for your honest answers and curious questions. Thank you most of all, for maintaining the highest expectations.... I'm going to be the best sick-person-getting-well ever! Man, I'm going to be radiant!!

Wowwy wow

Oh I love eating. Some days more than others.... but today, this evening in fact, was awesome. I followed my cravings. Put my body into the decision making process..... hummm yummm humm what would feel good right now? It takes some time to really work it out. Standing at the open fridge, pondering leftovers, available supplies, gut interests. Sometimes you have to nibble a few things in order to narrow the search. The nearest grocery store is over 30 miles away and its idea of variety is found in the can aisle, so planning is required for speciality items. Today, I'm going with simplicity. A little left over rice, a few assorted veggies, heavy handed with the red pepper, garlic, ginger, soy and I'm looking at my current heart's desire (slight variations feed the rest of the family). Colorful, textural, wowwy wow! Each bite a pizazz of ultimate delight. My eyes are rolling back in head. My daughter cuts in, "uh mom?" Hey... this is good I explain! Her eyes roll for a different reason. Whatever, I'm getting back to business. It's been over an hour since I ate, and I can still relive parts of it. Now I'm ready for the final course: a fist full of dark chocolate chips and hot ginger tea, or will it be a heaping bowl of oreo ice cream? Man, this makes up for a lot!

Dreams they chase me

The theme is the same: eyes dry and stuck shut, body staggering uncontrollably, mind disoriented and fearful. Since the beginning of treatment, these dreams have reoccurred. Different details, location, role plays, but always the same struggle. I fight to stand upright, stumble in forced blindness. I hear clear sounds of others around me. I pretend to be normal, social, to buy time (I want to stay), but I'm getting rapidly worse. I know they are waiting for me, just let me hide for a little while. My body feels drugged from an unknown source. I don't know how long this will last.

This time I make it to a mirror. I strain to raise my eye lids, one then the other. They feel glued and burn with irritation. Suddenly, I see my clear and unmistakable reflection. My eyes are discolored with white film, the left tilting hard to the upper right, the right pointing off to the lower left. I blink, desperate to control their direction. I stagger back to the bed and sink into sleep. The fight is drained from me, the others will just have to understand, I can't get up just yet.

Arr, me hearty!

Shiver me timbers! Keelhauled by the dreadful poison in me blood. Aye, I be in Davy's Grip now. Dreams they be chasin. Sleep not a wink. Me heads beatin an awful temper. Arr, it be a frightful sight.

*in honor of a pirate party me missing today

Halfway through infinity

Today's the official day. Halfway through a year's worth of treatment for Hepatitis C. Dah Da Ta Dah! Count down for surface penetration of Injection # 24 will begin around 6:30pm. Weather is favorable: skies are clearing, a north westerly wind picking up spirits this morning with an unexpected roll in the hay. So this is what it looks like from here? Cool.

HOW-TO

HOW-TO be sick and get well (hard lessons for the audacious Type A):

• Don't worry... you're still an over-achiever.
• Without help, care, and attention you will look like crap.
  
• Face it, you are no longer enough for yourself, you can't do it alone, and you are worth it.
  
• When you pause to prioritize, you will look hot.
• "Perfect balance" actually includes "needing others".
• To satisfy the accomplishment craving, chop tasks into tiny mini steps, swallow proudly.
  
• Ignore the ever present voice that says stop and sit down for no more than 5 minutes, but listen to the dizzy spells right away.
  
• Accept only the guidance that feels healthy, strong, and successful (you'll recognize it).
• Continue to look for the benefits of a situation and cling gracefully.
• Caution against indecision. You KNOW what you need, so ask for it, organize it if you have to... do you really want to wait around for someone else to get it right?
  

Momma's back

The question has always been intent. It's a fine line that separates good and innocence from all other actions. In the beginning I focused daily on my own intent. My intent to be well, strong, healthy. Imagined revving up each cell and radiating warmth and generosity inwards, cradling each organ in a loving embrace. Sounds slippery sweet, but it was hard work really. I was surprised at how much random angst my brain exercised and how badly it felt to feel it. At one month I had gotten pretty good at it and was rewarded with the ultimate trophy: an undetectable virus. Not saying the meds had no part in it, but come on.... slim chance they were the sole hero here.

Since then I've slacked a bit, a lot on some days, and I'm beginning to feel the effects. It's hard work with seemingly unlimited rewards, yet sometimes I just want to take a break, please no more. Well ....brake's over. Time to get back on track: threw my back out yesterday brushing my teeth. Come on! What's up with that! Brushing my teeth! Something is not right here and I obviously could use a little more potency in the strength department. And what's with crying uncle all of a sudden, "...throw me a rope." Get a freaking grip! I'm kicking butt here remember and this sorry attitude's not going to cut it. I've got 6 more months sitting on my pretty plate and I'm going to eat it all, big gulps, smacking my lips, ummm tastes just fine. You better believe it baby. Momma's back and she's huungry!

Fist full of hair

Not yanked, pulled, or grabbed, just gently falling all around me. My thicker than average mane once topped the charts at 150,000 to be sure. Now? It is amazing, how much can blow away in the breeze with no sign of a struggle. See you next spring...

O'Hair, O'Hair air air
Where will it lead us from here er er er.
All our dreams we held so close.
Seemed to all go up in smoke.
I hate that sadness in your eye yi yi.
O'Hair, Oh oh hair
Where will it lead us from here er er er.

(forgive me Rolling Stones)

Life will be rosy

Visited my ARNP yesterday, 23 weeks and counting. My levels are good: platelets, hemoglobin, yata yata bling bling. White blood cells dipped out of the comfort zone a few times in the past, but are now showing durability. It's up to me to check in with the other levels: levels of sanity, joy, strength, endurance. I cried uncle on a few of them. Asked for sleeping aid and stronger pain meds for the headaches. Last spring, I remember chuckling over the list of expected side effects, especially the bit about fatigue and insomnia. How could you have insomnia if you were fatigued? So naive, so naive. It turns out fatigue isn't tiredness in the sleepiness sense. It's more like the deep over whelming weakness of heavy bones and jelly muscles. So yeah, you can be a blob of powerless energy and lay awake most of the night. I coped and coped my little heart out, now throw me a rope.

I asked to have my viral load rechecked. She said once it dips to the undetectable level it usually stays there for the rest of treatment... Whether it remains there after the meds have stopped is the critical question. If any parasitic beasts remain, my animal drive to survive must continue the blasting on its own. I will be strong and relentless. Maybe there will be none at all and life will be rosy. I'll get a partial answer to that question in a few weeks.

Green Peppers

The knife caught my finger on the hard down stroke. Just a glancing blow to the finger nail, yet the immediate effect was the same. On the outside, I look totally normal, like a regular healthy person (except for the thinning hair and the periodic appearance of pain - purely med induced). On the inside, I'm forever reminded of the death eating robo virus surging through my veins, selfishly reproducing and searching for fresh hosts. I freeze, fear driven eyes scanning for crimson. I imagine buckets spilling towards my daughter, "Run, don't let it get you!" This time we're safe, none to be seen. Whew.... Automatic drift to what-ifs: toss the green peppers, bleach the knife and cutting board. "Stand back!" I say, "Watch out, it's trying to get you, too!" Should I do that anyway? What if the speck is so tiny I just can't see it? I pause...frozen now with indecision.

Is this what it will be like for the rest of my life? Is this how it should have been before I found out? The liver biopsy estimated 14-20 years of virus hosting. Fourteen to twenty? Was it the appendix surgery at age eight ('78), the tattoo at age 23, or something unforeseeable in between? I hate this road of thought. I always end here...worrying... did I pass it on? please no........ I remind myself, my daughter and husband don't have it. But I bled like a stuck pig during labor, what of the unsuspecting health care providers? I didn't know. I'm sorry. I want everyone tested. I want to know. I want to save the world.

I inspect my finger. Just a smooth sliver of nail missing. Where is it? I toss everything, scrub the knife, board,and counter top, start over with shaking hands. Overly cautious forever.

Happy Fool

Last night felt good! Voted for the primaries in a tiny one room cinder block storage house, standing in line chatting with the locals (only room for two at a time). It had rained earlier, I learned; a good shower some said. Rural life has its bling. Social life continued amongst the parked cars, we weren't invited though. Our surnames aren't from around here. Thirty minutes later, pizza tasted good. I blipped around the kitchen cooking like a happy fool. Joking with family and laughing at the dog.

A rare look from my husband and daughter caught me off guard. Welcomed relief. Nostalgic happiness. My caregivers. What must this be like for them? To view illness and pain, up close and so personal. To be needed every day, day after day. I do my best. Asking for help did not come naturally for me. "Doing less" was even harder. House keeping has suffered and my sense of adventure is satisfied when I can get out of bed with a smile. I work hard to take care of myself, so that I can take care of them. It's the least I can do and often the only. I long for these moments of relief, happiness, a little fun, and hope for future greatness. The evening was memorable, I dreamt of rivers, woke with a smile, toes tapping.

Staying Alive! Staying Alive! oo oo oo oo Staying Aliiiii iiii iiii iiiive!
doodi doodo doo doo doodi do Staying Alive! Staying Alive!

Yeah!

Today I feel good! I'm hungry! I'm making pizza!

late next spring

My goal, after treatment, is to run the shuttle of a canoe trip. Not the trudging along panting, drooling, heaving kind of running. I mean the flying, soring, head up, shoulders relaxed, body flowing kind of speed. YEAH! Five miles at least (hey, I never was that much of a runner)! That's what I'll be doing late next spring.

I'll finish treatment sometime in March. I can't quite look at the exact date, the possible details of that day are just too enormous. Will it all be for not? I begin to image the "oh well..." statements coming out of my mouth, "...a whole year". Even the flip side is daunting, will I actually be "cured" (in quotes because there is debate as to whether a true cure is possible). At one month the virus was already undetectable. Which jumped my chances from 43% to 75%... chances... chances of explosive joy? of relief? of future wellness? of a longer life? That's enough of that talk. I'll just keep dreaming of days filled with physical relief, boundless spirit, and a fast step.

full glass of water

Prioritize, prioritize, prioritize - do what matters most FIRST, because the rest might not happen. How many times must I relearn that lesson!

In the morning that means drink a full glass of water, then make the coffee. What's so difficult about that? Well... this morning: it sure would be nice to open all the windows in the house (fresh morning breeze is the best), then start a load of laundry (my favorite cut-off jeans are looking greasy), then stew over last night's small marital conflict (I just can't believe ...), then coffee.... right? But now I'm hurting, head swimming, beginning to contort. Uh oh... just finish the coffee... wait, I need to drink water, oh my head... I'm going down, on the floor, tears streaming, head pounding... stupid stupid stupid... forgot the lesson again! OK... Got it...now I need help. Call to husband, helping arms deliver salvation, desperation gulps it down.

Ode to Saturdays

Daily doses of ribavirin are somewhat manageable, it's the Friday night shot of peginterferon alfa 2a that kicks my ass for two days. But even that's unpredictable - just enough random extremes to keep me interested.

Oh Saturday, Oh Saturday, Where art thou sunshine.
Your skies filled with hue, Shined on things of new.
Now you smell of poo, You can go suck glue.
Oh Saturday, Oh Saturday, I miss your sunshine.

chocolate chip cookies

Husband called earlier, daughter just finishing her 6th roller coaster ride of the day. Sounds of large brightly colored thrill machines squealed in the background. The phone changed hands: "Mommy, I..." frenzied joy, bursting pride, first real taste of delicious risk. I need a cookie.

off to the park

Off to the the water park my daughter and husband go. The final celebration of the 6th birthday. Meeting my parents on the way. A day of excitement and joy. I had planned the day weeks ago. Planned to go myself. Visions of fast rides and wild splashes, laughter and shared memories. But I had forgotten my hep C eyes. The headache reminded me...creeping up days ago, lingering in full force this morning. I can't go on such an adventure. Not this year, not with this weight. I can't pull it together: new visions of crying, contorted frame and anguished glances from strangers face me now. Best to stay home. I've charted the progression of such days, coulda shoulda known it was coming. Something to do with the monthly hormone fluctuations, I guess... that's what the calendar shows anyway. New insights the doctors can't predict. The makers of my pain display long lists of possible aliments, neat little numbers collected from past patients. Each with their own story, their own flavor, possibly their own conclusions not gathered in the data sets.

A year ago I was still searching for different answers, not yet accepting the hep C conclusion. I was making calls and demanding new tests. Each result drifting me farther away from my neat little world. So many years, living free of this knowledge. Today it's hard to say I'm glad to know it..... yet I am. Better to face it now while I'm still strong and healthy, right?. Do this once and hope for never again. What we will do for the 43% chance of the elusive "cure".