Wednesday, December 26, 2012

dumb luck

Trigger warnings: Cancer, stress, death and cram-it-down-your-throat evangelism.

Yep, that should just about cover it. If you're not new to this blog, you know how I write and what I rant about. If you are new to this blog, hold on to your guts, this is about to get ugly.

Damn it's good to be working. Not just working, but working at a job that makes me happy. Working with coworkers that are as sarcastic and snarky as I am. Working in a field that makes a measurable difference in people's lives. Yes, I'm a lucky little duck.

Hold on a second. Back that up a little. Lucky? Lucky? I have busted my ass to get to where I am. I have gone to hours and hours of classes in all sorts of weather, regardless of my health issues. I have earned degrees and suffered through round after round of interviews. I have forced myself to stay up late and get up early in order to accomplish above-and-beyond job performance. I scoured employment ads, filled out countless applications, applied for hundreds of positions from janitor to educator, and when I found a spot, I dedicated myself to being the best I could possibly be. That is what earned me the position I have now. Not luck. Not sympathy. Hard effing work.

So when you look at me and give that little smirky smile and tell me how "lucky" I am to have such a great job, know that back in the part of my brain that is ever so carefully controlled, I am envisioning myself slapping the ever-loving crap out of you.

But other than that, self, how was your day?

Sometimes it really sucks to have a body that looks relatively healthy. Obese, yes, but otherwise healthy. It sucks because it makes me feel like I cannot acknowledge the pain that I am dealing with. The people who know me best can tell. They see the tightness at the corners of my eyes, the darkening of the patches on my cheeks and the hesitation when I move to sit, to stand, to walk. And, like the best of all humanity, they keep their mouths shut and trust that I will stop when I reach my limit and ask for help when I must. It's a damn shame that I don't. I don't stop at my limits. I don't ask for help. I'm wired so strangely that to do either of these things would be tantamount to letting the disease win. There's no way I'm going to let the disease win. Not without a fight.

The news from the medical world is not good. Since chemo and radiation are essentially out of the question, there is very little that can be done for my stubborn self. The cancer continues to gnaw its way through my smooth tissues and I continue to hurt. Some days less, some days more. My hemoglobin continues to be deformed and my reserves of iron are again lower than medically acceptable. No, I don't think I will agree to having another 4500 mg of iron pumped into my system, thanks anyway. It didn't work before, and there is no evidence that it will work now. I'd rather stick with the sick I am used to being instead of adding on that extra level of excruciating pain.

I will continue to get up early and make my way to my desk before everyone else arrives... not through any desire to be the early-bird, but because I'd rather as few people as possible see me making my painful way down the long sidewalk. It's difficult enough maintaining the positive attitude and projecting the bad-assery necessary to work in this environment. Having to explain why the tears are gathering in my eyes by the time I open the last gate would be too much to bear. When I arrive early, I can arrange myself into a semblance of order before facing the world. I need those few minutes. They help me stay sane through the day.

Yes, I'm going to go to the restroom after lunch. Every day. That food I just ate won't stick around for long. No, it's not an eating disorder. It's the cancer eating my guts. It might be delicious, but there's no way it's staying down. And yes, that's why I have a box of hard candy in my desk. The sugar keeps me from crashing. I know I'm fat. I also know my body. This is what works for me. Making a casual and not-so-offhand remark about the diet you're on isn't going to change what I have to do in order to continue to work. It's just going to make me seethe.

And while I'm at it, I'm glad you had a Merry Christmas. And, yes, I did have a nice holiday, though I don't celebrate Christmas. Gifting me the pocket-sized New Testament when you know without a shadow of a doubt that I am not Christian... and doing so at WORK... and going so far as to tell me I can keep it in my DESK... and doing all of this in front of another co-worker... not cool. I sit quietly while you pray over your food. I wished you a respectful Merry Christmas. But I can do without your conversion tactics. I am quite happy with my beliefs. I am an honest and a moral person. I hope that highlighter that was lifted from my desk over the holidays makes its new owner happy.

Ask me for nearly anything I have and I will gladly give it to you, take it without asking and I'm going to be grouchy.

Speaking of asking for things... I realize you were being somewhat sarcastic when you said you'd trade your health problems for mine. And in all honesty, I don't know if the health problems you have described exist or not - I'd think it would be difficult to power walk with multiple stress fractures in both feet - but maybe you have a very high pain tolerance. But considering the way you look and the health issues you say you have... I'd think you'd be more aware that someone doesn't have to look sick to be deathly ill. So when I responded to your offer of a health problem trade with "Really? You'll take ALL of them?" I was more than a little serious. After all, stress fractures eventually heal and kidneys are difficult to get but they are available. It seems like a good trade for cancer crawling through your innards, a body that won't digest vegetable proteins and which has lately refused to digest much of anything, coma-levels of hemoglobin and ferratin stores, progressive rheumatoid arthritis, insomnia, migraines, severe abdominal adhesions, surgical scars that randomly open up and seep lymph, internal (soluble) stitches that have calcified and work their way out through lesions, hive-inducing allergies to aloe, catfish and artificial sweeteners, patellas that tend to subluxate and a propensity for falling off porches. Somehow, I doubt you really want to trade.

So, it's 1 am and I'm up writing this instead of sleeping because dinner didn't stay down and I have fiery pain running up and down my spine. The numbness from the nerve damage in my left thigh is from about 3" above the hip to just below the knee on that side, so staggering to the bathroom is a challenge - and that numbness now has a new associated pain. The bottoms of my feet have cracked in several places and the headache that teased me all afternoon now rests firmly against the back of my eyeballs. No big deal. I'll just grab a nap for a couple of hours and be my bright and cheerful self at work tomorrow.

How did I get all of this? Just lucky, I guess.

Saturday, November 10, 2012

oh, poop

I have some sort-of good news. I'll be insured once again starting December 1, 2012. This means I'll be able to go through the process of locating a new GP and oncologist and rheumatologist and hematologist and dermatologist and will hopefully get all of my issues back under the watchful eyes of people who "practice" for a living.

Meanwhile, back at the ranch, I've been sporadically taking my herbal concoction. It does work - when I take it regularly my hemoglobin levels maintain between 6-8 and sometimes climb as high as 11 or 12, my energy level is subjectively better, I sleep (a little) better, I have improved focus and my guts aren't all stabby-twisty-pully feeling all the time. However, when I take it regularly my guts are all burny all the time and I have a greatly decreased appetite along with a greatly increased incidence of massive heartburn.

The migraines exist either way. Hmph.

So, an update... My left thigh from 2" above the knee to above my hip joint continues to be numb to the point where pain does not generally register in that area... or pain that doesn't exist randomly registers in that area.

My knees continue to sublux (aka the kneecap slides off its normal position to the side, then snaps back into position) roughly 2 - 4 times per month, depending on my activity level.

My bones continue to be brittle in my extremities and I'm dealing with several cracked metatarsals at the moment (poor footsie!) and an ominous grinding sensation in my right wrist.

The pain has settled for a level 4-5 daily, without medication, occasionally spiking to an 8-9 and on rare, blessed, occasions giving me the empowering relief of a 1-2.

The migraines exist. Persist. Linger at the fringes of my vision. Ready to be triggered by flares of light or sound.

And the rheumatoid arthritis, though it hasn't begun to show dramatic twisting of my joints, has increased in incidence of flares. I can now expect my fingers and toes to "lock-up" at least 2-3 times a week... larger joints lock, ache, pain flare in accompaniment to these incidents.

And I can't seem to poop. I'm usually like clockwork. Wake up, brush teeth, poop. Come home from work, have dinner, poop. But lately it's gone DAYS between movements and I'm a miserable human being. My guts are hard (and still burny and twisty and rippy and shreddy)and my clothes don't fit. I may have to resort to assistive technologies... yep, considering an enema.

And now for the weird stuff. And by weird, I mean that the italicized portion below is the "gross" stuff that you may want to skip right over. Won't hurt my feelings at all and might save you some nightmares. Really, you can just rejoin the rest of us gluttons for punishment after the italics stop. You were warned.

As my dear readers know, I no longer have any female bits... my cervix, uterus, fallopian tubes and ovaries are sitting in a jar somewhere being marveled at by medical students. It's been this way for quite some time. So, imagine my surprise/shock/horror when while walking through a local store, I was hit by an excruciating round of "oh my goddess, my guts are ripping themselves to shreds" that, quite literally, brought me to my knees. Yep, my chunky monkey self, on my knees, right there in the dog food aisle. Whimpering. After several minutes, I managed to climb to my feet and use the cart as a walker to get to the bathroom.

Hello. What the everloving frack?

Now, perhaps one of you can enlighten me about this, because I cannot for the life of me figure it out. How does someone who has NO ovaries ... and who has NO OPENING at the place where the cervix "used to be" manage to not only start spotting... but also pass a freaking DERMOID CYST? And yes, I'm very, very certain that's what it was. I have -extensive- experience with these horrific globules of broken dreams. But it begs the question - if I don't have the generating bits anymore - where the heck did this thing come from?

And spotting. Yes, spotting. Okay, maybe something tore loose. Sure. It can happen. Maybe the incision opened up a little to let something through. Okay. I'll even buy that. IF it were an isolated incident. But is isn't.

For the last 4 months, every month, for a couple of days, I have had pink-to-red spotting.

What? I haven't suffered enough with this? Has my crazy body decided to regenerate and curse me once again? Honestly, I wouldn't be surprised.

Okay, enough with the ick.

In happier news, I've been promoted at work. I'm now in a career service position with much better pay and actual benefits. Plus I get to teach, which is freaking awesome.

I've been attending EPI (Educator Preparation Institute) courses at the local community college and will be finished with them by early summer - then I'll snag my English 6-12 and ESE endorsements for my teaching certificate and all will be right with the world.

Guess that's about it for now. We'll see how the great doctor hunt goes in December. I'll be sure to keep you posted.

Monday, June 25, 2012

dangling participles

First things first. Yes, I've been away from this blog for a while.  I've been taking the herbal formula and celebrating the little successes - the hemoglobin level that seems to be staying stable around 8, the occasional restful sleep and of course, the new job.  I think it's the job that has been most responsible for keeping me away.  It's only 30 hours a week, but it's a big change from what I have been doing while struggling to regain my health (or at least a semblance of health) over these past few years.

I alternately love and hate my job.  I love that I am a Librarian... in charge of two libraries... one a law library, the other a general library.  I love that I am effective and useful and that I am doing something toward keeping my family afloat financially.  I don't love the fact that these libraries are within the penal system and that I am expected to supervise inmates on my own.  And the paperwork.  I'm not too keen on the mountains of paperwork.  But overall, I'm happy with the job and I'll stay as long as they'll continue to pay me to do so.

What brings me back to Diagnosis Impossible?  More blood work.  I guess there'a a yay involved, because the hemoglovin hasn't completely crashed.  But there are other things which are far less "yay" in nature.  The level of iron in reserve has dropped to critical levels once again - down to 2 now, when it should be near 100.  So I'm not storing any of the iron long-term even though I'm taking in enough to keep my levels in the 8 range.  That's not good news, but it does explain why when I start feeling my body go into flare-mode I can offset most of the crash with a massive protein intake.

But the worst news is the upsurge of cancer markers in my blood.  It seems the wee beasties are alive and well and multiplying happily within my bowel and other smooth muscle tissues.  I can't say I'm surprised.  I knew they would eventually get around to making themselves known again.  I just hoped I'd have more time before they did.  No such luck.

Which brings me to this post.  A well-meaning co-worker discovered my illness today and reacted with sympathy... but not too much sympathy... which was both appropriate and appreciated.  However, she also said, in a very shocked tone: "But you look fine!"

How many times have I or my friends heard those words from some well-intentioned (or sometimes a not-well-intentioned) person?  Why is it that our society bases their perception of illness or disability upon the outward appearance of the individual?  I was met with disbelief, shock, even a little mistrust, simply from admitting that I do, in fact, have cancer. 

I am not emaciated.  I'm a fat, sassy and often cheerful individual.  This flies in the face of everything society says illness should be.

This same lady continued to comment along the lines of: "But you're so cheerful!"

To which I calmly replied, "It doesn't make sense to me to be upset over something beyond my control."

She asked about treatment options.  I gave the standard "I can't tolerate it" responses to radiation and chemo... which, I will admit, are the easy answers.  It is much harder to explain that I would rather let the disease have me than submit to something that will definitely cause me excruciating pain and prolonged illness - especially when my particular circumstances and complications will circumvent those treatment options anyway.  I did tell her that I take an herbal formula.  She started to ask if it was created by "one of those Far Eastern doctor people" but was fortunately interrupted by a call back to her work area. 

I know, from my prior interactions with this individual, that she means no harm and no disrespect with her comments and questions.  She is genuinely concerned and is trying to make sense of what she sees as a disruption in her world and in her perceptions.

Even so, it is never okay to respond to an admission of illness with "but you look fine!"  It may seem nice, I mean you are indicating that you cannot see any outward signs of such a serious illness, but it actually hurts.  So many people struggle with invisible illnesses.  It is time we shift the dialogue from how we look to an honest assessment of how we can help.

Thursday, April 12, 2012


I was talking with a friend today, about the usual - bills, financial woes, the sucky state of the job market, that sort of thing.  During the course of the conversation we came to the tentative conclusion that the only way to break free of lower class poverty is to win the lottery.  My response to that became this post.

I'd love to win the lottery.  Problem is, I never have the dollar to spare to PLAY the lottery. As for paying bills and eating at the same time?  You've been nibbling the mushrooms again, haven't you?  I'm in a terrified panic because my freaking student loans start going into repayment in August and here it is April with zero jobs and the one job I -might or might not- have is only part-time with no benefits.  But even with that, I'll take it.  Heck, my husband has been getting extra hours at his job over the past few months but he still only works 30-35 hours, and with all the bills - yeah, and my credit is wrecked because how was I supposed to come up with the roughly 10 grand that insurance didn't cover for all that medical crap when I had the news "Happy Birthday, you have cancer!"?  And now, I'm puking my guts out for going-on three days and I don't have a doctor in the area that will touch me unless I suck it up and go to the ER - and then they will demand $200 up front just to see me since it's not my heart and I'm not overtly bleeding out. 

I want to know - how do people "make it" in this country?  How do people locate and successfully navigate that elusive "ladder to success"?  And people need to can the "work hard and you'll succeed" crap, because it simply doesn't work.  I work hard. My husband works hard.  My friends work hard.  And we're foundering.  We're dying.  And yet we make too much for any sort of public assistance.  Too much.  We grossed right at 10k last year - combined.  So how do these people live who have house payments of over 2k/month along with car payments and insurance and electric and cell phones with internet access.  What is the damned secret?  We don't even have a television, much less cable or dish or directTV.  Our only source of entertainment/splurge is internet access, and honestly, if I didn't need to have it to find work and upload my writing/editing stuff, we wouldn't have that, either.  Right now our house phone won't dial long-distance.  We can get calls, but to call out we have to go over to my in-law's house.  We have power - but our a/c is set at 78.  I cook on a single burner hot plate and with a tiny microwave because we can't afford to get gas for an oven and the house isn't set up for an electric range. 

Yet I'm thankful.  I'm thankful that I have a roof over my head and floors under my feet (even though they are starting to get weak in places).  I'm thankful that my husband has a job at all.  I'm thankful that we have lights and a refrigerator.  I'm thankful that we have a washing machine, because I don't know how I'd scavenge change to do laundry - much less drive the half hour to the nearest laundromat.  It doesn't even bother me all that much that the dryer is once again broken.  I can hang the clothes outside, no problem - and I'm thankful that I have a little bit of land that allows me to be able to do that.  But damnit, there has to be a way to get out of this rut.  There must be something I'm overlooking, something I haven't figured out yet, something that will let me have just enough to catch up and stay current.  I don't even ask for enough to get ahead - because that would be a freaking pipe-dream.  But just enough to be able to pay every bill, every month and have enough for gas and groceries.

Meanwhile, I have this fear that even what little we do have will disappear and we'll be left homeless.  I've been homeless. I don't want to go there, ever again.  But with every step I take forward, with every bit we accomplish, a half dozen new things go wrong.  If you know the secret, please, pass it on, because I know we're not the only ones going through this.  I know there are people going through an even harder time.  I know we're all in this together, but it sure does feel like we're the ones getting trampled by the masses.

So, yeah, I'd love to win the lottery.  I'd love to be able to play the lottery without having to choose between a ticket and a dozen eggs... because the eggs will feed us for a week and that ticket?  Well, it's probably nothing but disappointment clothed in false hopes.

Tuesday, March 27, 2012

inch by inch

I am happy to report that my hemoglobin remains stable at 15.  I've had to back off on the new medication a little because it started to cause a few unwelcome side-effects, but overall everything is going well.  I have a noticeable increase in my energy level most days, and I continue to ever-so-slowly shed weight.

Now that I no longer have impending demise hanging over my head, the little day-to-day annoyances are creeping back.  While out with friends, we stepped into an overcrowded, cramped eatery for beverages and I had that gut-wrenching sense of fight-or-flight adrenaline rush.  Rapid exit ensued, and after several calming moments I was able to regain my composure enough to continue wandering through the flea market.

It's not all angst, though.  I made it though two levels of vetting for a potential job - working as a library tech in a correctional institution - and now am waiting to hear if I am the one selected from the three finalists.  Meanwhile, I continue to fill out applications and tutor my remaining students as the need arises. 

I've been struggling with my publisher lately.  It seems some of their timeframes for distribution are not exactly accurate.  Although both Solerna and The Schubark Chronicles: Tales of Wagging Tails, In Their Own Words are available through the publisher's site and, they have yet to post in the iBookstore.  I pushed their listing through on myself, so they are at least available for the two most popular e-readers: Kindle and NOOK.  It would be nice to have them available for Apple devices sooner rather than later, but at this point it looks like I'll just have to be patient.

Meanwhile, the paperback version of Solerna is receiving rave reviews - and even has a fanfic following.  I am happy with the reception of my work, but need some new ideas for promotion.

My Relay for Life fundraising seems to have hit a wall as well.  I can completely understand people being unable to donate considering the difficult economy, and am thrilled that I've been able to raise what little I have thus far. 

My website is now live! will get you there.  It is fairly basic for now, but does have links to most of my current projects.

Speaking of projects, the writing never stops!  I am currently working toward the deadline for The Schubark Friends, my second volume of children's stories told from the point of view of companion animals.  This time, I solicited suggestions for companion animals from friends and relatives, and I've ended up with a nicely diverse list.  In addition to one Chihuahua, I have a rabbit, a rat, a snake, a cat, and five other assorted breed dogs.  It will be interesting to find out what these guys have to say.

I have the sequel to Solerna in the works as well.  It is in the rough outline stage, but I continue to fill in details and story arcs nearly every day.

Another exciting project is the current Call for Papers for Pagan Ethical Dilemmas, a non-fiction essay anthology that I will be editing.  Response has been slower than expected, but the deadline for submissions is over a month away.  I've noticed that locating collegiate Pagan Student Associations is rather difficult, and compiling email addresses for those PSA groups is akin to herding cats - and just about as effective.  I think more emails have bounced than have gone through. 

I am excited to see my gardening efforts begin to unfold.  After a week of watering and countless wheelbarrow loads of thistle remnants carted away, some of the seeds have begun to germinate!  In fact, the only things that have yet to poke above the ground is the lettuce and the spinach.  We have baby radishes, carrots, cucumbers, pumpkins, several types of beans, beats and kohlrabi.  Oh, and sunflowers and cabbages!  And I think the cilantro may have sprouted as well, but the leaves are tiny at this point so it's difficult to tell the plant from any weeds that may have rooted in that pot.  Inch by inch, row by row - goes the gardening song that seems to be my theme song of late - I'm happy to gather those inches and rows, those hours and days, and weave them into my tapestry of life.

Monday, March 19, 2012

kicking buckets

Now that I have a little more breathing time, I thought I'd revisit that bucket list and see what needed updating.  Come to find out, I've completed quite a bit of the list.  The original list can be found here.  Thanks to several very helpful friends and family members, I was able to cross off all except the following items:

1. Throw away/give away/sell/recycle all the stuff I'm not actively using and/or don't love.
2. Grow cotton.
5. Busk as a bard. 
9. Read aloud to a group or an individual:
         - The Schubark Chronicles
10. Grow orchids.
11. Learn to identify 10 constellations. (I already know 5!)
12. Make an amigurumi.
14. Spend 24 hours in silence and without technology.
15. Get certified to teach in Florida (and Missouri?)- halfway there - got my certificate of eligibility for FL!
16. Go to Dragon*Con in 2012.
17. Wear a lolita outfit.  In public.
25. Watch a Cirque du Soleil show.
26. Make a basket.
29. Go on a road trip with no destination and no plan.
30. Build a cabin.

Leaving fifteen of the original 30 items.  Not bad.

I've even made progress on several of the remaining tasks.  I'm slowly working my way through the accumulated treasures in the office, donating and discarding with a severity I've never before attempted.  The results are slow in coming, mainly because of the sheer volume of things I need to go through and the amount of time I'm able to commit to each session of sorting.  I have made some inroads, however, and am quite content with that for now.

The cotton is another story.  I am having a heck of a time finding a source for seed.  I will continue to search.

I'm nearly confident enough in my storytelling abilities to attempt busking, though it would be better if I had a singing voice and/or musical talent on a stringed instrument.  Though with the persona I've developed, it doesn't really make that much difference.

I have had the pleasure of reading several things aloud to various groups and individuals, but am still trying to schedule a children's story-time event with one of the local libraries for a reading of The Schubark Chronicles.  Soon, I hope.

The orchid growing continues to wait for the building of a permanent greenhouse, which is waiting for gainful employment and a steady income... so we'll see.

I'm getting better with the constellations.  I have Orion, Ursa Major, Ursa Minor, Canis Major, and Taurus so far.

I have a plan for the amigurumi, just need to sit down and do it.

The silent/no tech thing will happen - again, soon.

I applied for and received my certificate of eligibility for teaching in Florida.  The English part went off without a hitch, but apparently I need a course in Mass Communication for the Public Speaking bit.  Or just pass the test.  I'm thinking it's nearly test time.

Dragon*Con hotels are completely sold out and the alternate hotels are nearly gone as well, but I am working on a couple of angles that may still let me go.  I continue to have hope!

The lolita outfit will be finished by this weekend... and I'll be wearing it while I serve at a Red Hat tea party.  I think that counts as "in public."

Cirque du Soleil is still a dream.  Perhaps next year, now that I have a next year.

I very nearly made a basket out of mimosa bark, but I waited too long and now the bark has dried.  I'm going to soak it soft as soon as the chickens get out of my bathtub.

Though the road trip sounds like fun, the only one I'll be taking soon definitely has a destination and plan.  I am honored to be presenting at a Pagan Student Association workshop for the gang at my alma mater, FSU.  That event will be this weekend, and I couldn't be more excited!  The topic is "Kitchen Witchery," and I will be engaging the participants in hands-on cooking activities as we charge and cook an entire menu of deliciousness.

I've begun to design my dream cabin, and intend to construct this diminutive dwelling as soon as finances permit.  Believe me, photos will be taken and shared, because no one would believe I'd done it otherwise.

So, that's the rest of the list.  I think it's a good list, and I'm still happy with it.  I look forward to crossing off the rest of these entries... all the way to 30.  Of course, that won't mean I'm finished - it will just mean it's time to make another list!

Monday, March 12, 2012

support group

There's nothing quite like watching four grown men fling themselves onto the slender aluminum legs of a canopy in an attempt to keep it from going airborne.  This is even more entertaining when potted plants and rusty metal sculptures with very pointy edges are flying through the air and tumbling along the ground.

The Lake City Home and Garden show was an obstacle course of adventure last weekend.  Canopies were lost, plants were unpotted and the indoor booths for once got more attention than those outside.  Of course the wind whipping up clouds of scouring sand and mini-cyclones of razor blades (okay, they were oak leaves, but they left nasty scratches) might have had something to do with driving attendees indoors.

I entered a raffle for a Wolfgang Puck indoor grill and was one of two who remembered to show up at 3pm for the must-be-present-to-win drawing.  The man called out seven ticket numbers, none of them were mine.  None of them were the other lady's either.  Well, that's not true.   He was calling the last four digits.  She was reading the first digits and wondering why the numbers he kept calling were shorter than the number on her ticket.  When she finally figured it out (at the point where he had MY ticket number in his hand to call next) she realized he'd called her number four tickets ago.  She walked off with the grill.  15 seconds longer and I'd have won. 

Oh well, I'd have probably burned down the house with the thing anyway.

Because that's what I do.  Not intentionally, of course.  But some days it's more cost-effective for me to stay curled up in the center of the bed, not touching anything electronic or alive.

"What had happened was..."

I got up at 2 am to fix breakfast for my husband before he left for work at 3:20.  Normally I will pull the blanket over my head and mumble "bye, love you, haveagoodday" and make kissy noises toward him as he leaves, getting up to make my own breakfast a respectable 3 or 4 hours later.  But this day I wanted to be nice and make him a good, hot breakfast.

Well, sort of.

We make big batches of breakfast burritos and freeze them.  That way, 2-3 minutes in the microwave gives us a quick, hot meal when we are running late.  However, if you take a few more minutes and pop the burritos in the toaster oven, you get a delicious, crunchy-shelled breakfast of deliciousness and win.  I opted for the long version.  I even remembered to spray cooking oil on the pan so they wouldn't stick.  Tossed them in the oven, plugged that sucker in and set it for 10 minutes.  Turned.  Walked to the bedroom door (about 8 feet away).  And just as I reached toward the door knob, I heard gosh-awful popping noises from the toaster oven.  I dashed back to the counter as sparks and smoke started issuing from beneath the device, jerked the cord out of the outlet, manually shut off the timer and decided the microwave method might not be so bad after all.

The toaster oven is... well... toast.  The burritos weren't quite as tasty, what with the scent of burnt electrical wiring wafting through the air and all, but they were edible.  And making my husband breakfast in bed completely threw off his groove for the rest of the day.  So instead of a win-win, I ended up with a fail-fail.

But it could have been worse.  If my leg hadn't been numb from sleeping all twisted up in the covers, I'd have walked faster to the bedroom and most likely missed hearing the sparking.  That would have been a disaster of epic proportions.

Of course the toaster oven was our only oven - because of some quirky circumstances the house was only set up to accept a gas oven - which was fine for a while.  I love cooking with gas.  Except our local propane company has some sort of additive in their gas that makes ash build up on the pilot lights, putting them out every other day or so.  "Why do we have headaches all the time?"  "Oh, wait, because we're breathing in gas because the pilot lights are out again."  So we moved the gas stove out to the shed and had the propane company come pick up their tank.  But, when we went to install an electric range, we discovered the lack of wiring.  Lovely.  Now we have to find an electrician to install an outlet for the range.  And to figure out what the breakers marked "range" actually control.

So, breakfast over, I move to my next task -  laundry.  Toss in a load, move a load to the dryer, no worries.  Turn everything on, wait to make sure no sparks fly (see, I can be taught!), and work on the next book while I wait for the buzzers to go off. 

Two hours later, no buzzers.  Hmm.  Curious.  The washer is done, the buzzer had just been turned off.  No worries there.  Open the dryer to pull the clothes out.  They are still wet.  Warm-ish, but wet.  This is not good.

Try another cycle.  45 minutes later, the clothes are still wet.  Lovely.  That's ok, I can deal with this.  I'll just haul the clothes out to the line and hang them up to dry.  Except I can't find the clothespins from the last time I used the line (about 2 years ago, I think).  Necessity becomes the mother of invention.  Plastic hangers - hang the clothes on the hangers, hang the hangers on the line.  Added bonus: don't have to put the clothes on hangers after they're dry, just hang them right up.

But the dryer is not working.  I go online to try to figure out what could be wrong with it.  And it beeps.  Wha?  Beep.  Beep beep. Beeeeeep.  What the heck?  Go, turn off the dryer.  Back to the computer.  Type-type-type. Beep.  Beep beep. Beeeeeep.  Okay, I know I turned it off.  I'll just ignore it until I finish this search.  Beep.  Beep.  Beep.  Beeeeeeeep.  Beepbeep.  This thing is possessed!  It is making noises I've never heard before.  I'll just unplug it for now.

Only, I can't reach the plug.  Because we have the washer and dryer up on lifts to make them easier to use (they're both front load contraptions) and this has blocked access to the outlet.  And I'm short.  So I can't just reach over the dryer to get to the plug.  Aha.  This is why we have a step-stool.  Well, this, and reaching top cabinets.  So I pull the step-stool over and climb up.  But I still can't quite reach.  So I lean over the dryer.  And my foot slips off the step-stool, slamming my belly into the front edge of the dryer, scooting it back along the lifts and making it absolutely hopeless for me to get to the darned plug.

Alright, fine.  Put the step-stool back, go back to my computer to look for the source of the problem.  Start typing.  Screen goes black.  What?

Not screen-saver black.  Not sleep-mode black.  No, this is "the power just died and you are screwed" black.  Only the power in the house didn't die.  the power to my laptop cord didn't die.  And the laptop battery is fully charged, so that wouldn't have killed it anyway.  Hmm.  Pick up the laptop to see what's going on.  No sparks, but wow, it feels kind of warm.  Odd. 

Turn it back on and it works just fine.  Something is different though.  Can't quite put my finger on it.  Hmm.  Wait - it's being very quiet all of a sudden.  Aha!  The fan isn't coming on.  Well, that's just peachy.

So, instead of the toaster oven, we're now doing all our cooking in the microwave and on a hot plate.  Instead of the dryer, we're hanging out our clothes.  And I still use the laptop, but I save, often.

Which brings us back to the home and garden show.  Where, for some unknown reason, I signed up to do Relay for Life as a survivor.  Which is fine.  But I also said I'd go to the next meeting of their women's cancer support group.  And that's tonight.  So I'll try not to burn down the house while I'm getting ready.

Wednesday, March 7, 2012

vehicular pornography

The past few weeks have been a little bit of everything: crazy, fun, tiring, sad, thrilling, scary, joyous and downright weird.  I wouldn't change a thing!

Let's start with vehicles.  Remember the old blue Honda Civic?  Yeah, we'd pretty much forgotten about it, too.  It's still over at my brother's house, waiting for the day when either he is out of the wheelchair and able to work on it or we find a way to tow it over here so we can work on it.  When we parked it, it ran.  Just needed a transmission rebuild.  Then field mice happened.  Now it needs a whole new wiring harness and who knows what else.  It won't even start anymore.  So, we moved on to the station wagon.  Good, dependable car, circa 1988.  The head started leaking oil, so we pulled it to do a gasket change.  And a nut off one of the rocker arms ended up falling into the engine and somehow we can't find the darned thing.  Magnet-on-a-stick is too big to fit in the hole, we've probed every orifice (and even checked in the oil pan just in case it fell all the way through) but no luck finding the nut.  If it weren't so heavy, we'd pick it up, flip it over and shake it until the thing fell out... but it's freaking heavy.  And now the car has one very flat tire and one kind of flat tire and the engine is out and sitting on top of two old tires and we've been without a car for quite a while.

Of course, we have the truck.  And the truck is awesome and good.  But it holds exactly two people.  Unless you're a contortionist or under three, that little bench seat behind the main seats is more like a medieval torture device.  This means that whenever Peter and I and his mother want to go somewhere together one of us has to squeeze into a space the size of a cat carrier - or we take her truck and our truck.  Not very fuel efficient.

Today we added a 2003 Chevy Malibu to the mix.  It runs great, rides great and has a spacious, comfortable back seat.  And the dealership almost couldn't sell it to us because they couldn't find the paperwork from when they bought it.  Hilarity, and an hour or so of waiting, ensued.

What will become of the other two cars?  We're thinking of taking them apart, piece by piece, and hauling them to the scrap yard.  Or, more likely, we'll borrow a car trailer from someone and haul them there mostly intact.  Either that or we'll make some sort of installation art piece from them in the front yard... where it can annoy our fussy neighbor.  I'm thinking of painting them in garish shades of chartreuse and fuschia and positioning them so they appear to be breeding.  Now that's an idea!

Monday, March 5, 2012

sometimes there is no bad news

My sister-in-law arrived Saturday for a whirlwind weekend visit.  We had a lovely lunch and walked through a local Home and Garden show made extraordinarily amusing by excessive wind.  It is difficult to shake hands with people when they are busy holding their canopies with death-grips in an attempt to keep them from blowing across the fairgrounds.  Most were successful.  There were a few highlights of the show. 

I very nearly won a Wolfgang Puck indoor grill.  And I would have won, too, if the other lady hadn't figured out she was reading her ticket incorrectly.  Why, yes ma'am, I have been reading the last four digits, not the first four.  She had actually won several tickets prior to her figuring out the process. 

We did get four free dogwood trees from a landscaping company.  They look like sturdy stock.  I hope they do well where we want to plant them.

I popped in at the blood mobile to see how my hemoglobin levels are responding to the new treatment and got a very pleasant shock.  When tested a little over a month ago, my level was at 5.5 - steadily falling from the first of the year.  Saturday, however, after three weeks on the new medicine, that level was up to 15!  15 is out of the danger zone completely.  I still couldn't donate due to the blood transfusions from earlier in the year, but it looks like I've managed to beat the old man with the scythe yet again.  Going from a prognosis of 3-5 months to one of 3-5 years... now that is an event worthy of a kermit flail. 

After this fantastic news we wandered through the last set of displays and happened across one for the Women's Cancer Survivors of Lake City who were talking up Relay for Life.  Well, hey, I'm a survivor.  Granted I'm also currently playing host to those wildly multiplying cells, but so far I'm still breathing and that counts, right?  I was on such a high from finding out my new magic number that I signed up for Relay for Life on the spot.  Oh, I won't do the whole thing.  I think 18 hours of walking would give me a whole new meaning for pain.  But I'll at least do the survivor's lap - and maybe a few more for good measure.  And I'll try to collect some donations.  And I think I'll toodle on over to the group meeting this month as well.  They seemed like nice ladies.  We shall see.

Meanwhile. I have chickens in my bathtub.

Yes, you read that correctly.  Chickens.  In my bathtub.  More specifically, in my guest bathroom bathtub, with a heat lamp hanging from the shower rod.  The chicks, four White Jersey Giants, are in that stage of fuzz-and-feathers where they are almost cute but not really.  I'd forgotten how much chicks poop.  And, incidentally, how much chicks eat.  These little girls (the feed store lady assured us they were sexed pullets - but would make no guarantees) are more fuzz than feather, but they can already fly up to the edge of the tub.  They sneak out when I'm not looking.  I know this to be true because they leave little birdy poops on the floor outside the tub. 

The puppies are very interested in these new additions to the family.  Morgie, in typical fashion, wants to be their surrogate mother.  Okay, she wants in the tub under the heat lamp, and if she has to play mommy to four peeping feather-heads to manage that, she's in.  Stripe wants to sniff them.  Stripe wants to sniff everything, though, so that's nothing spectacular.  Stitch wants them to shut up.  Little Bear wants to make sure they don't steal any of his blankets.  Guinea Pig wants to make sure they don't steal any of her belly rubs.  Anubis wants to know what chicken tastes like.  No, he doesn't seem to want to harm them.  He does want to lick them, however.  A prospect not welcome in the world of chick.  So, for now, I have chickens in my bathtub.  We'll see how long that lasts.

In book news, The Schubark Chronicles is increasing in popularity according to sales, and has even garnered a couple of nice reviews.  Solerna is just now going live, and early signs look positive for its success.  It is so gratifying to know that even if the cancer wins, I have managed something that many people only talk about doing.  I thought it up.  I wrote it.  I edited it.  I sent it out for others to pick apart.  We edited again (and again, and again, you get the idea).  And finally, it was finished.  And in a couple of days, I'll hold a copy in my happy hands.  I think that will deserve another kermit flail.

Monday, February 27, 2012

birthday madness

I don't know how to express the depth of appreciation I have for my husband.  He pulled together a birthday party for me that was a beautiful event full of laughter and life and love, and for one blissful day I was able to ignore everything that is going wrong and concentrate on the things that bring me joy.  I was surrounded by friends and loved ones and even received presents (which were totally unexpected on my part - I thought people were just bringing snacks!).  We played games and went from naughty to silly and back again.  The food was great, the people were even better and I think good times were had by all.

Of course I stayed up too late and had too much sugar and missed a dose of my new meds, but the payback I've been feeling since then has been oh-so-worth-it.

I've also been whittling down that bucket list.  I ePublished my Children's book of puppy-point-of-view stories, The Schubark Chronicles available now as an EPUB file, and soon to be available in the iBookstore and at Barnes & Noble for NOOK readers.  One of my dear friends not only bought the book, but read it right away and posted a review - then listed me on Goodreads as well.  I'm still pretty excited to be listed as an Author on Goodreads - that's a pretty big deal!

Now I need to move forward on Solerna, my YA novel.  I need to add a glossary and tweak a few things from the latest editor review, then format it for ePub and standard publication.  I hope to have it up and available (at least for ePub) by the end of the week.  Standard publication will take a little longer as I will have to go through a proof copy before it goes live and that will take a couple more days.

That bucket list is shrinking day-by-day.  Here's what's left:

Throw away/give away/sell/recycle all the stuff I'm not actively using and/or don't love.
Grow cotton.
Busk as a bard. 
Read aloud to a group or an individual:
     - Solerna (my YA novel)
Grow orchids.
Learn to identify 10 constellations. (I already know 5!)
Make an amigurumi.

Spend 24 hours in silence and without technology.
Get certified to teach in Florida (and Missouri?)
Go to Dragon*Con in 2012.
Wear a lolita outfit.  In public.
Publish Solerna
Watch a Cirque du Soleil show.
Make a basket.
Try raw sugar cane.
Go on a road trip with no destination and no plan.
Build a cabin.

My next goal will be a book signing for Solerna, hopefully at the local community college.  I think it would be fitting to do it there as a sort of "local grad does good" event.

I'm trying to find time to do the 24 hours without speaking or technology - maybe this weekend will work.

For now, I have a tutoring job in 11 1/2 hours (so yes, I should be sleeping) and have a bunch of work to do on the first entry on that bucket list.  I have a job interview on March 13th that I am very excited about.  It is a part time position at a library of sorts, so it is something I'll be physically able to do - at least for a while yet.

And now the best news of all - the medication seems to be working.  I don't have definitive proof of that yet, because without insurance it is difficult to get the testing done that will let me know for certain, but I do know that I am more alert and able to do more things for longer periods of time since I started on the new program.  I've had some other signs that things are healing, but I want to hold off on that bit of news until I know for sure (or at least until I have more data.)

tl;dr - Great birthday.  Book published. Job interview. Medical improvement.

Monday, February 20, 2012

if I had another day

I am frustrated, confused and rather hurt.

Guess what?  I'm dying.  It should come as no surprise if you've even had a passing interest in this blog.  It isn't an absolute, of course.  Sure, sudden miracles have been known to happen.  Maybe, just maybe, the new medication I've been taking will turn things around or at least give me a little more time.  But the cold, harsh reality is: I'm dying.  If things continue as they are, I have about three months left.

I've been asked, over and over, what I would like to do with the time I have remaining.  My overwhelming response has been that I would like to spend time with my friends and family, preferably while I am still coherent enough to enjoy the experience.

Plus, my birthday is coming up.  In 5 more days, actually.  And it happens to fall on a Saturday.  And I've never had an honest-to-goodness birthday party on my birthday.  Ever.  So my darling husband decided it would be an awesome thing to invite tons of my friends to share in what could be my last birthday.  We envisioned a party with plenty of fun and loads of laughter and a break from the typical "oh, you're dying" awkwardness.  A day where I could relax and visit with friends and snack on delicious things and play games and just enjoy myself.

Sounds pretty darned perfect to me.  So, what's the problem?

He invited loads of people.  Around 50 or so.  (And in this case, if it was a couple being invited I counted them as 1, collectively... so really around 80 people total were invited.)  And invitations were sent out weeks in advance, giving plenty of time for people to plan ahead.  Again, what's the problem?

The problem is, we've heard from 4 people.  Four.  Two of those are regrets.  One is an "I'll try."  Only 1 person cares enough to do this simple little thing - to take a couple hours out of their day to stop by and say "happy birthday" to someone who is facing the end of their days on this Earth.

Do you know someone who has died?  Have you ever wanted just one more chance to tell them you care about them? 

Apparently the people I have always considered to be my friends are using this opportunity to instead tell me that they are like honey badger - and they just don't give a fuck.

You know what?  I love them anyway.  Every damn one of them. 

I just wish they'd give me the chance to tell them that... because headstones aren't very talkative.

Wednesday, February 15, 2012

care to take a turn

Things have not been going well.  I have a lingering cold, which my husband and I seem to be passing back and forth.  I'm starting to feel the effects of the falling hemoglobin levels - I am constantly tired and my body aches, my feet are twin icicles and my ankles and wrists/hands swell quite frequently.  I can feel my pulse as my heart struggles with the lower oxygen levels. The dark patches are back and my hair is falling out again. Other symptoms, however, are more troubling.  Increasingly I've been experiencing something that I can only describe as "my guts hurt" - abdominal discomfort in a twisty-wrenchy-burny sort of way.  And there is another indicator that the cancer is thriving within my bowels - more blood clots are being expelled.  I know, "eww!"  But I promised to be honest here, so there you have it.  My body is determined to lose blood, and since I took away the 'via the girly-bits' option, it has found another outlet.

But, I've found another way to fight back.  I've begun a promising herbal treatment program that has had some success in other countries.  After extensive research, this particular blend appears to deal with most of my odd array of symptoms and disorders: the smooth muscle cancer, the immune system gone haywire and the low hemoglobin levels.

Brewing the stuff makes my little witchy self all sorts of happy.  Though I have the herbs in a pre-blended package, the process is somewhat intensive.  Boil a gallon of water, add 4oz of the herb blend, stir, cover and boil for 10 minutes, stir, turn off the heat and let sit for 12 hours, stir, bring back to a boil, sitr, strain and decant into a bottle.  Ok, it's not labor intensive so much as it is time intensive.  The smell is rather pungent, but it's not so bad once you get used to it.  I've just taken my first dose and the flavor isn't bad at all.  I expected bitter, but was pleasantly surprised.  It does have a somewhat woody taste, but overall it's smooth.  I'm glad it doesn't taste horrible since it has to be taken on an empty stomach, and I have to wait an hour before eating anything after each dose.

At this point, what do I have to lose?  At worst it will have a placebo effect - which might give me a little more time.  At best it will kill the cancer and help my immune system and hemoglobin production.  Heck, I'd be thrilled if it would just fix the blood problems.  At least then I'd have the energy to tackle the rest of the issues.

And speaking of issues.  I'm still looking for work... and still getting rejection notices.  If it weren't so sad it would be funny.  One company told me that they wouldn't hire me because my facebook profile photo wasn't a picture of me - and my having a profile photo of an aardvark wasn't presenting the professional image they expected from their employees.  I guess if I'd been in a low-cut top doing duck-face I'd have a job.

Meanwhile, I've started the process to attain my teaching certificate.  Essentially that process is: pay the DOE lots of money.  Oh, and send transcripts to prove you have a degree.  I am optimistically applying for admission to an EPI (Educator Preparation Institute) program at the same local college where I earned my AA.  The class cycle starts in August, and is eligible for financial aid.  So, that should be fun.  I keep looking to see if any of the local (or semi-local) schools need English/Reading/Speech teachers, but no luck thus far. 

So I'm occupying my time by working on The Schubark Chronicles, a series of puppy-point-of-view stories that will be e-published (hopefully) in March.  Don't worry, as soon as they are available, I'll let ~everyone~ know.

My main project right now, though, is preparing for a Kitchen Witch demonstration that I'll be doing for the FSU PSA (Pagan Student Association) on March 24th.  I have no idea if I'll be doing this in an actual kitchen or not - so I'm trying to be very flexible with my plans.  I'm sure it will be fun times, regardless. 

Tuesday, January 24, 2012

it's okay to let yourself feel bad

I keep falling into the trap of trying to be brave and stay strong all the time.  Honestly, it's exhausting.  Yes, my dishes are piled up.  Yes, I could stand to do a couple loads of laundry.  Sure, mopping the floors is on my to-do list.  But sometimes there are more important things.  Even when those important things are simply sitting still and letting go of the to-do lists and the "I ought to" concerns. 

Even when it feels like I'm not being as good a wife as I should be, or as good a daughter, or mother, or friend; sometimes I just need to get over myself and understand that it's not my fault.

I didn't ask for cancer to happen to me.  I didn't do anything to encourage it.  I went to doctors.  Many doctors.  Many times.  For many years.  I did what I was supposed to do.  It's not my fault that my body doesn't remember how to be healthy.  It's not my fault that tests expected to show climbing levels instead show plummeting numbers.  There is no one to blame; no outlet for my rage, my dismay, my confusion or my sadness.  I have to keep reminding myself that it is okay to let myself feel bad.  This, too, is part of the experience of dying, even as it is part of the experience of living.

I can be as optimistic as... someone who is really optimistic... but that doesn't change the ticking of the clock and the turning of the calendar page.

I feel like my friends are drawing away from me. Insulating themselves.  And though I can understand that desire, I selfishly want to hold them close.  I want the last sounds I hear to be their laughter.  I want the last things I feel to be their love.  When I finally rest in Summerland, I want to be able to look into this world and see them at peace.

I want to make plans and do things with them now, while I am still able.  I want to be able to say goodbye on my own terms, not have a chaotic rush at the end when I won't be able to respond.

So, on mornings when I sit here alone, feeling hot tears spill from my eyes, although I want nothing more than a focus upon which I can pound my fists in frustration, I am left only with the simple fact that what I want has long ago ceased to be relevant.

I don't want anyone to realize too late that they won't have another chance to say what they feel.

The worst thing about ignoring mortality is living with regret.

Wednesday, January 18, 2012

ramblings of an unemployed insomniac

Well, January is rather more than half over, so it's time to assess my progress.

I am losing weight - just not as quickly as I'd hoped and with more up-and-down fluctuations than I'd like.  I haven't missed a single day of checking in on the Wii Fit - and most days I do 25-30 minutes of yoga, aerobics and strength training on the system.  In addition, when it isn't raining or sludgy outside, I go for walks.  The walks aren't particularly brisk, but they seem to be effective.

Now, the problems.  Going all-liquids was a no-go.  I couldn't manage to get enough of the animal protein my body requires and therefore ended up getting sick rather quickly.  We rapidly modified the plan to include a sensible meal: low carb and heavy on the protein.  On the days I remember to eat, I tend to do well.  It is easy to get off schedule, however, and end up not maintaining the small amounts throughout the day.  When I screw up, I feel it the next day.  I end up sluggish and listless at best.  At worst, I end up harfing violently (and often without much warning) and going through chills and fevers.  So, I'm trying to stay on some semblance of a schedule.  At least I'm managing to eat more than once a day for the most part - so that's a start.

I can now understand how people get addicted to exercise.  I feel better when I go through my yoga/strength/aerobics routine.  It feels good for a while after I've finished - even when I'm a little sore from the workout.  Unfortunately, the good feeling fades within an hour or two and it is often tempting to run through the workout again just to get the feeling back.  I've learned not to do that, though.  When I do too much, I end up unable to move very well the following day.

I can tell that my body is slowly fading, even as I'm getting a little more toned and losing a little weight.  My vision is blurring again and I'm having trouble focusing on tasks.  Concentration slips easily - though I've been dealing with concentration lapses for so long that I'm generally able to force myself to keep going, even when I have to read and re-read several times.  My joint pain has returned, flaring and easing in completely random cycles.  Not unexpected, but still unpleasant.  I can't remember the last time I didn't have a headache.  And the insomnia is definitely back.  I guess that's kind of obvious as I'm writing this at 2 am.  I slept for a little while earlier - about 30 minutes or so.  Every household noise wakes me up.  I even have a fan on for noise - to drown out the sounds of puppies lapping water or crunching kibble - but since Morgana is in heat, I hear every whine and whimper of the boys trying their best to charm her through the door.

We spent an enjoyable several minutes earlier watching a towel disappear beneath the doorway.  I thought that if I dropped a towel there it might block the smells and let the boys get some peace for the night.  The boys had other ideas.  I'd no sooner get the towel in place when a puppy foot would dart beneath the door to dig it through to the other side.  As soon as it got far enough through, the pup would grab the towel in his teeth and pull.  Our side of the door = magically disappearing towel and lots of giggling.  We'd grab it before it went all the way through and pull it back to our side, setting it in place again.  This went on for several cycles before we figured out that if we doubled the towel it was more difficult for them to drag through.

Keeping the boys away from Morgie is turning out to be more difficult than usual this time around.  While we were out the other day, the boys apparently got into a fight.  They mostly ended up with bruises and small cuts.  Anubis got the brunt of it, though.  Three of his feet were torn up, one with a split pad and another with a broken toenail close to the pad.  We switched the sleeping arrangements around that night - put Morgie out with Guinea Pig and Little Bear, brought Stitch, Stripe and Anubis in with us.  Gave them all baths and doctored their wounds, then let them sleep on the bed with us.  They all seemed to get some good rest - of course Stitch couldn't help but "mark" the entire room - so that isn't acceptable for a long-term situation.

I'm still looking for work and still getting rejection letters.  Trying to stay confident that something will turn up soon.

Peter's alarm is going off so it's time for him to get up and for me to try to get a few hours of sleep before starting my day.

Sunday, January 8, 2012

the measure of success

This new year is kicking my arse.  I'm one week in and have already looked at that liquids-only-for-a-week thing and had a good, deep belly-laugh.  Oh, I've modified my intake and I've bumped up the liquids a great deal and I've had some success in lowering caffeine and eliminating sodas, but I haven't exactly been as stringent as I initially intended.
I'm having difficulties coming to grips with the simple logic that my body is already in starvation mode and has been for quite some time.  I am one of those awful people who tends to eat once a day, which plays havoc with the metabolism.  Sticking with my usual intake with a smaller portion size and adding exercise ended up with a net GAIN of 4 lbs over three days.  Not a good thing at all.  So I've started eating more.  Counter-intuitive, I know, but realize that my usual intake was something along the lines of... nothing until 2 to 4pm... then a 6-8oz protein, 4oz vegetable, 6oz carb and 20-30oz beverage... and another beverage before bed... modification was in order.
I'm now attempting the following:
Morning: nutritional shake
Late morning: 4oz fruit
Lunch: 4oz protein
Afternoon: 4oz vegetable
Dinner: 4oz protein
Evening: 4oz vegetable
along with a minimum of 20minutes aerobic exercise and yoga daily, plus at least a short walk - working on increasing the distance and duration of both the walk and the exercise.
Sunday is my free day.  I can eat (or not eat) as I want, though I still have to do the exercise.

Exercising isn't all that bad - I'm using the Wii Fit program with the balance board.  It is a pretty good motivational tool and has the advantage of a daily weigh-in and tracking features along with the ability to set short-term or long-term goals.

I'm already having some success with this plan - I've ended up with a net LOSS of 3.3 lbs - and any progress is good progress.

With all this attention to what I'm eating and when, I've also noticed some things about myself.  First, it will be impossible for me to eat vegetarian.  My body continues to reject plant-based iron sources.  In fact, only when I've eaten beef do I feel an increase in energy level and overall well-being the following day.  Second, I have scent-related issues with consuming pork.  Unless it is highly seasoned (or cured, like bacon), I just can't bring myself to eat it - and it's all about the smell.  Third, it is difficult to change my eating patterns and habits.  I'm struggling, but managing.  I just keep reminding myself that I'd like to go on living - that makes it a little easier to make the difficult decisions and to eat when I don't feel like eating.

Now that the dietary portion of this post is out of the way, on to fun things!

While the job search continues, I've been spending time working on household projects once again.  Peter and I tackled the daunting task of emptying out our chest freezer.  It contained less than we thought, but held a few surprises.  We lost the last of the chicken to severe freezer burn.  But we salvaged the remainder of the pork - which I thawed, cut up and ground for sausage.  We ended up with over 20lbs of sausage in a variety of flavors: cajun, middle eastern, regular, chili and plain.  Sample tastings of the cajun and middle eastern were promising.  It will be interesting to see how those flavor profiles develop as they age a little.

Also in the freezer were seven rabbit pelts I'd stored around 5 years ago.  The pelts are from New Zealand White rabbits, a large meat producing breed.  Two are smaller pelts - about 1 sq foot, three are closer to 1.25 sq feet and two are large, around 1ft x 2ft.  I thawed the pelts overnight, then washed and split them.  They are all in excellent condition - the fur has retained its loft and is firmly attached.  I opted to begin the salt-and-acid tanning process to cure them into usable hides.  This is one of the easiest tanning methods and works very well on small pelts.  In a 5-gallon plastic bucket, mix 2 lbs of non-iodized salt in one gallon of hot tap water.   Once the salt is dissolved, add one gallon of cold tap water, stir and let sit until the temperature is tepid.  To this, carefully add 8 oz sulfuric acid (available at auto parts stores)... the easiest way is to tilt the bucket and let the acid flow along the side of the bucket to the water so it doesn't splash.  Stir this in carefully (giant wooden spoon - or plastic - don't use metal anything with this method of tanning.) Pelts should be split along the belly and to any leg openings so they can lay flat - but you don't have to worry with fleshing them at this point - just make sure any large chunks of fat or flesh are off - the little stuff will come off later in the process.  Wash the pelts in dish detergent and warm water to remove any blood or debris.  These hides were pretty clean, but I made sure to give them a good once-over anyway.  Rinse twice to make sure all the soap is off, then squeeze out as much water as possible - don't wring them!  Put the pelts into the salt-acid solution and stir to make sure they are fully saturated.  Weigh them down with a large scrubbed rock... or, in our case, with a glass pie pan weighed down with a hunk of scrap marble counter-top we picked up from a friend.  Just make sure all the pelts are underwater.  Loosely cover the bucket (we used a plastic trash bag) to make sure nothing falls in accidentally.  Then leave it alone for three days.  We're on day two today and it's tempting to mess with it, but I'm resisting the urge.  Tomorrow I'll pull out a pelt and see if the inner layer will peel off easily.  If it does, I'll rinse them all and flesh them by peeling off the membrane layer, then put them back into the solution for another week or so, stirring every day to make sure they all get an even soak.  At the end of two weeks (or a little less), I'll pull them out, wash them again, and lay them out to dry.  As soon as they are "almost" dry, I'll stretch them against a chair-back or the porch railing until the hide is soft and supple and evenly white, then buff the fur side a couple times against the railing, brush it out and figure out what I'm going to do with 7-9 sq feet of tanned rabbit hide.  Suggestions are welcome!

Now that the washing machine pump has been successfully replaced and the leak fixed (thanks, Peter!) I am going to catch up on the laundry.  Catching up on the laundry will clear off the bedroom floor so I can vacuum.  Vacuuming will prompt the rearrangement of furniture so I'll finally have a mock headboard on the bed.  The plan is difficult to describe, but I'll try.  I intend to turn our two nightstands so the drawers face either wall and slide them behind the head of the bed to make the base of the headboard.  On top of those, I'll stack the dresser with drawers facing toward the bed.  Because of the size of the nightstands and dresser, it should end up making a lovely, unique headboard with tons of useful storage.  Moving the furniture around will let me get to the closet to clean and reorganize it.  Fixing up the closet will let me move the clothes off the rod along one bedroom wall - opening the bedroom up again.  So, essentially, having the washing machine fixed will let me rearrange and clean the bedroom - which is all moot, really, because we're tossing around the idea of turning the master bedroom into a workshop and moving our bedroom to the guest room... which I will need to clean out first!

Let's just say I'm finding plenty of projects to keep me busy while I continue to search for a job.  Meanwhile, the struggle to regain my health continues. 

Sunday, January 1, 2012

making it or breaking it

January 1, 2012. 
There are a few new things going on this year.  First, I no longer have medical insurance.  Once I graduated from FSU, insurance coverage became a thing of the past.  I did have one more test done while still insured - more on that in a bit.  Second, I am unemployed.  That's not really new, but it is more of a problem now that I'm not in school.  I've been applying to places like crazy, so something is sure to pan out eventually.  Third, that bucket list I've been talking about?  Yeah.  I'm seriously attacking it.

Back to that medical test.  I figured I'd go get one last finger stick to see if my hemoglobin was tracking as it should. Two stabs later (because surely those initial results were not correct!) and it was official.  I'm not stabilizing as we'd hoped.  If I were, my level should have been at 6 - which is horribly low, but personally acceptable.  It's at 5.  A full point below expectation.  What does this mean?  Well, it pretty much confirms the time line we have already been looking at - things going critical in or around March and the possibility of lingering as long as May.  Meanwhile, I can expect to be increasingly tired and out of breath and I'll have to be wary of anything that could significantly weaken my already taxed systems.

The nurse wouldn't let me leave until I'd talked to the doctor.  She, of course, recommended immediate hospitalization for a round of blood transfusions.  I managed to maintain a calm and controlled emotional state (at least on the exterior) while I quietly refused.  No more transfusions.  We've proven that those don't work for me.  She gave the overall issue some thought and then came up with a new plan.

If we can't find a way to increase the hemoglobin, we'll just have to make it easier for the blood to reach everywhere in my body.  That means having less body.  We did a weigh-in.  Last January I topped the scales at a whopping 296.  As of this weigh-in, I've dropped to 268.  Although a 28 pound loss is cheer-worthy, it isn't enough.  Because of the extensive adhesive disease, I am not a candidate for any of the gastric surgeries.  Instead, I have to act as though I've had one.  I can't even call what I have to do a "diet" because it's more extreme than any plan I've ever seen. 

The initial goal is a loss of 50 pounds.  The issue is that I need to loose this as rapidly as possible - within two to three months.  Now, before any comments about weight loss that fast being hazardous to the health, remember that I'm already pushing a deadline ~literally~ and doing something drastic is my only hope for survival.

Thus, starting today, I'm on a week of liquids only.  Two nutrition drinks and the rest water, weak tea and a little broth.  Since I have an allergy to artificial sweeteners, I have to simply cut out all sodas by the end of this week... and I'll have to cut out tea within the next 2-3 weeks.  In addition, I'm bumping up my activity level with daily walks to and from Mum's house and adding a bit of exercise to that every day.

Next week the real struggle begins.  6 meals a day, each with 4 tablespoons of food.  I can eat whatever I want within reason - just tiny, tiny portions of it.  That goes on for 6 days a week, followed by one day of somewhat larger portions - to ensure my body doesn't go into starvation mode.  Along with longer workouts, this should keep me on track.

The hope is that if I can get the weight off, it will ease the stress on my heart and give me some more time to let my hemoglobin stabilize.

Once I reach the initial goal, the next will be shedding a total of 63 more pounds, bringing me to 155.  Although the second stage can be slower, it still needs to happen at an accelerated rate.  I'm not going to worry about anything other than the first stage right now, though.  Because if I can't do that, it all becomes moot.

Now I have to swallow my pride and ask for your help.  I will need encouragement throughout this process.  An occasional uplifting comment or just a hug from time to time will go a long way toward keeping me on target.  And if you see me out and about and you notice that I'm in danger of slipping off the path, feel free to chastise me.  I'm hereby giving each and every one of you a "free pass" to be as politically incorrect and blunt as you see fit -- because I love each and every one of you and would like to continue being a part of your lives for a lot longer than three more months.