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.