Thursday, January 26, 2012

Feeling sheepish...

Version 2.0 mattress, which actually was my first choice originally, was delivered yesterday (per the lovely photo on the last entry).  By night's end, my arms did not hurt, even though I sacrificed the pillow-top feature and my back was much, much better after my first nocturnal stay upon its plush-top-firm-individually-wrapped-coiled infrastructure, resulting in the longest "asleep" period I have had in longer than I can remember.

But...I have learned that Amos is a bit smarter than I.

You see, after leaping up on the bed and abruptly finding himself back on the floor without achieving his goal, he rather quickly figured out that he could access the bed from the antique trunk that sits at the foot of the bed.  Being an active little fellow, all last night and each time today that he needed to leave or get back up on the bed, he used the trunk as his launching and landing pad.

Me?  Well, twice last night I fell out of bed.  And...a third time...I fell getting into bed. I am wondering if I need bed-rails for my new mattress.  Frankly, I don't think climbing in and out of bed via the trunk is an option for me.  I suppose I could figure out some sort of steps for crawling into bed without landing on the floor, but can you imagine the catastrophe of my trying to walk down steps in the middle of the night when the needs of my body call?  The number of times I get up to be ill in the bathroom has gotten better, but I still need to leave for other purposes in the bathroom and sometimes I end up using all six ice packs between the first time I get into bed and when I finally admit that I am up for the day.  That means six trips out of bed, down the stairs to the kitchen, and back into the bed.  A veritable disaster in the making.

Who's bright idea was it to make modern mattresses so stinking lofty in stature?  I am 5' 7" and I struggle with accessing the bed.  What do those more vertically challenged than I do?

I wonder if the difference is magnified by the new box spring I was gifted.  However, I am sure it is far too late to ask for my old one back.

Bed rails.  ARGH!  I am a middle-aged woman!  Shouldn't I know how to navigate a bed by now?  I do not need to buy yet another item when I got a rotten little letter today telling me that the last $2,268 of unemployment will no longer be forthcoming.  That was a huge blow to me, especially since I went ahead with the replacement of my seventeen-year-old mattress.

Given that nary a single response to the well over 100 resumes I sent out garnered a response and that my body is hourly falling apart, I suppose I should accept the admonishment and advice that I should begin the disability application.

I am just a silly girl.  I really am.  But, to me, just the mere thought of working on that application makes me feel like I would be declaring that my life is over.  Stupid, I know.  Especially one who spends far too much time on Amazon looking at travel chairs (lightweight ones really designed for a friendly person to push you around). A few folk have pushed me around places with those free-use wheelchairs in stores and museums and such this past year and not struggling to walk about sure was nice.  Really nice.  I was thinking it would be oh so convenient if there was one in the back of my car when folks visited in case they were interested in skipping the gym and get their exercise by pushing me about during trips out-of-doors longer than a few minutes of walking here or there.

Even so, even though I already technically am, I do not wish to be disabled. Nor do I wish to spend the next two years (or so I have been advised) arguing with the government that I really do have a body that sort of no longer likes me.

Stupid mattress.

I am Yours, Lord.  Save me!


Which is louder: Amos' snoring that is currently blaring in my ears or the auditory result of my roiling innards that is currently filling up the rest of the room?  Too bad I cannot upload an audio file for the popular vote to decide.  I suppose the embarrassed part of me hopes that it is Amos.  I suspect it is not.

I wonder just how many pages Faulkner could have filled up describing the cacophony emanating from my abdomen?  There would certainly be no discussion of symphonic melodies....

Wednesday, January 25, 2012

Good things and bad things...

I would be lost without Amos.  No matter how miserable I am, Amos' snoring makes me smile, if not outright laugh.  He is my ever constant companion, even peaking up over the side of the tub whilst I am showering.  He has never complained about any of my health issues or how restricted his life is at times.  We are two of a kind, for I am not sure if he likes curling up on me for a nap more than I like for him to curl up on me for a nap.  And I am daily thankful to my Creator for creating such a fluff ball puppy dog (albeit a bit of an overgrown beast for his breed), who has more affection in him than even the loneliest heart on earth could desire, and then sent him my way.

I love Sandra's mind.  She has the bestest thoughts for me, not the least of which was ice packs for my headaches turned migraines. She also told me about a place where I could get an $11 haircut to clean up the continued whacking I have done in an effort to lighten the weight of my hair and yet still have something left on my head.  My follicle burden is currently ever so much lighter, without sacrificing any more length, since I am now sporting a crop full of layers with a distinct lack of the former crookedness and choppiness.  And it is not just for me her fine mind works...check out this awesome chore system she created for her son!

Dysautonomia is the most wretched, most vile, most difficult part of my existence.  I have really only begun to scratch the surface of this disease, this condition that has nothing but a distressing, discouraging, and dismal future ahead for me.  I did find the most wonderful--to me--blog by a woman battling dysautonomia.  It is brief and stopped short, with the most heart-wrenching last post...probably because, as you can see, how devastating the disease had become to her life.  I believe her most creatively titled blog is a rather interesting glimpse into the wretched state of life with dysautonomia.  And reading through it made me feel slightly less alone, especially the post on migraines.

I need to strive for more Myrtle victories.  For example, I finally managed to soap the drawers in the built-in cabinets of the servants' storage closet and the bathroom.  This made opening the 92-year-old drawers much, much, much easier.  [Freshly folded towels add a bit something to the visual effect of the closet, don't you think?] I also finally remembered to add rubber "feet" (oh, the things I have had tucked away in my toolbox for ages on end) to the bottom of my small vintage Dr Pepper tray I keep on the kitchen counter so that stray water will no longer make the bottom rust and leave a pesky ring on the counter top.  And accomplishing something, anything, makes for a better day or week for me, when so much of my time is spent uselessly huddled in the GREEN chair simply trying to make it to the next moment.

My amazing home keeps getting better.  Having another visitor helped me learn a couple more things about it.  First, you can be creative in making space for others.  In the bathroom, since there is no vanity with space for people to put their things while visiting, I cleared out the top drawer of the built-in storage for my guest.  This way, she did not have to cart all her getting-ready things back and forth from her room each day. In doing so, I rearranged my own stuff so that when people are not there, I can have all my medications quick-at-hand in that drawer, but can easily move them to the one below when someone visits.  [There is far more storage in the bathroom than a single person--even one with six diseases--can possibly use.] I also learned that my stove is truly a marvel.  An original ad for it can be found here.  Can you believe that in 1969, you could buy a self cleaning oven that also had a built-in meat thermometer tied to a timer, a rotating roasting spit, and a griddle?  My visitor helped me figure out that the front burner was not broken, but rather that my understanding of how to use the four features of it was broken. The sensi-temp burner can be used as a 4", 6", or 8" burner or as a base for a griddle.  [I have ALWAYS longed for a griddle.]  I found the instruction pamphlet for the burner, as well as the oven instruction booklet, and a separate double roasting pan sized for each oven.  All of these special parts to the stove were in their original packing, having never been used! I find myself continually blessed by the added features of this home that were rather inexplicably not included in the sale listing. And I marvel at how much of a sanctuary it has become to me.

Fort Wayne has a place worth taking visitors! You can read about the botanical gardens, located in the heart of downtown, just a hop, skip, and a jump from my home, here.  With 25,000 square feet of indoor gardens, this place is a wonder of cactus, tropical, and garden plants from all over the world. They have complimentary wheelchairs for those unable to traverse the long walk, an altogether too tempting gift shop and eatery, a research library, several interactive educational areas for children, and wonderful outdoor gardens for when the weather is warmer.  I found this place to be equally impressive as the National Botanical Gardens in Washington, DC, when you consider what a small city Fort Wayne is.  And the wonder of this spate of nature is truly an oasis of beauty and peace to me.

The longer I look the greater the beauty I see in Fred and Ethel.  It is strange to me, to think that I have only known them for a brief time and have yet to meet.  I kept coming back to this flower again and again, because there were so many fantastic features in it.  I love variegated leaves and finely veined petals.  The center stack is most wondrous, even as it is such a strong contrast to such delicate outer-structure of the flower. And the best part is that the whole of the flower, as is that of a friendship with Fred and Ethel, is even richer and fuller than all the individual features. 

The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa the bad things don’t always spoil the good things or make them unimportant." ~The Doctor, "The Doctor and Vincent," Doctor Who

Yes, last night was a misery.  My future truly does look grim.  And another migraine is lurking just on the edges of my senses.  The strain of the visiting puppy trauma was hard on me, primarily because of how very much it reminded me of the pit bull attack.  I did not nap at all.  And I really do not like being so ill in front of others as much as I do crave some company.  I am oft still lost and confused, even in spiritual matters. I am fairly sure I have nerve damage in my foot. And I am frightened over my impending dire financial state.  But my Good Shepherd has provided me a new-to-me, rather fantastic oven range, a new bed with beautiful new sheets, new friends who have heaped kindness and mercy upon me, a newish puppy who loves me rather fiercely, someone to help me straighten out some things in my past and learn to face my difficult future, the best, most kind, unbelievably encouraging doctor who listens to me and is working very hard to figure out a way for a best case scenario in a complicated, compromised, rather ill body, and a home that is actually a palace to me.

I am Yours, Lord.  Save me!

Just one moment more...

I have been battling a migraine since late morning (now officially yesterday).  The wretched thing seems very attached to me. And once again I am so both my utter inability to face this new enemy with anything other than despair and how weak I am in handling the pain, the nausea, the problem with sounds and lights and moving and thinking and anything else save for surviving just one moment more of abject misery.

I talked with Bettina some this night, shoving the agony in my head aside and maintaining a firm grip on my nausea...though...oft I thought I sounded a tad harsh or unfeeling or terse. During a vacuuming break, I rose to go to the bathroom.  That movement was enough for me to lose my grip on the nausea and all the ginger ale I had been sipping, as well as the bacon-lettuce-mustard-mayo-buttermilk toast sandwich I had for breakfast, came spewing out of me.

Throwing up while your head feels like it is ready to explode and implode all at once is not something you wish to experience.

I have a pros and cons chart for my visit to the surgeon tomorrow regarding my progress on the Loestrin.  Despite this day, I absolutely do not want to give up the combination hormone treatment. Perhaps...I might be willing to try the even lower dose of this low-dose hormone option, but it is different hormones and different probably means fighting new side effects.

Plus, the very dramatic change the hormones have wrought--completely eradicating 7 terrible symptoms that were greatly diminishing my quality of life and 1 irksome symptom--is so very remarkable to me that I am not ready to say that the three problems the medication has brought negate its value: the headaches and now migraines; the low blood sugar episodes; and its affect on how the Theophylline helps the near fainting and fainting episodes.

However, when the migraines occur, I sometimes find myself unable to see myself hanging on for just one moment more.  A little while longer until the 2nd or 3rd dose of Imitrex takes effect.  A 3rd or 4th ice pack to make waiting a bit more bearable.  The utter loneliness I feel when being engulfed in the pain that is seemingly inescapable.  The dejection I battle because I really am a mere animal at such times, sorely lacking in any shred of humanity or decency, caring for nothing more than the migraine to end.

Pain is such a funny thing.  I have had years of pain now, between multiple sclerosis and arthritis.  Nerve pain is wretched stuff, both in the variety of type and location of agony it can inflict.  However, apparently, my very high threshold of enduring pain, masking it even from others, does not count toward pain in my head.

The thing that is driving me crazy, absolutely crazy, is that this is happening mid-pack again, as if it is another ovulation migraine, the surgeon had me skip the brown pills, not have a single break between packs this time to ensure there was no chance of ovulation. If I am right as to the cause of this day's misery, then the lower dose would offer no hope of avoiding this.

I could have surgery, either an ablation to try and stop the bleeding or go straight to the hysterectomy.  However, the former may very well not work and both would not negate the need for the hormones and would most likely make all the problems I have on that side of the equation actually worse if I were to have my ovaries removed during the hysterectomy. The surgeon sees that as a last option, the poorest option.  Only migraines are not acceptable to her either.

I suppose a part of me feels, truly feels, as if I have failed by not managing to tackle the headaches before the three-month trial of Loestrin is over. To have, in fact, so spectacularly failed by moving from headache to migraine, by adding one more wretched, horrid, difficult, debilitating medical battle to my plate.

And time is running out.  I am spending so much money trying to address this issue when I have no more hope of income.  I am down to just five months more of COBRA insurance that at least lessens the financial burden of pursuing this.  Five months to find an answer.  Honestly, I cannot imagine paying for 40% of what the surgery would cost, but truly I could not do so when my cost would increase to 100%.

Five months and my only option, should there be no victory here, is to go back to being trapped in the prison of wild emotions, constant bleeding, and the other problems that made life just that much harder.

With no abatement after over twelve hours, I suppose I shall not be sleeping this night.  In less than ten hours I shall be dragging myself to the surgeon's office, most likely dizzy and nauseous and weary and in pain and beg her to find that seemingly impossible solution whereby I am not back in that prison that I fear with my whole being nor am I huddled in this new misery that binds me even more.

I suppose, given my condition, it is a good thing it is only three turns to her office....

I am Yours, Lord.  Save me!

Sunday, January 22, 2012


I have done practically nothing since Thursday at 10:15 AM.  I have slept, napped, dozed before mindless television, and avoided even the smallest thought.

The doctor said I had a virus, albeit a pernicious one.  Her own husband was going on Week Four of battling this particular foe.  She advised what over-the-counter medications might best soften the effect of the symptoms best in my own battle.  More importantly, though, she also took the time to reorder my medications so that I could shift the Loestrin to the morning.  My blood sugar has been plummeting most nights and this is most concerning to night...worried that it might happen when I am sleeping and helpless to help myself.

Taking it in the morning confirmed the medication was the cause of my blood sugar issue because I plummeted the first day mid morning.  At least now I know that it is not a failure of my insulin resistance mediation, but rather the side effect of another medication.  So, I merely need to remember to eat with the Loestrin and again every few hours throughout the day. no longer my forte.


I failed in my hosting endeavor in that I failed to nap a single day.  I drove myself to be out and about and up and active when my body really cannot do that.  I suppose it is the combination of both the virus and the exhaustion that has made the past four days pass primarily without notice.  Amos, being the best puppy in the world, has spent most of the time curled up in my lap in the GREEN chair or beside me in bed. He has not minded all the sleeping and resting and nothingness.  It is my plan to continue to pursue this path of sleeping, napping, and dozing in front of mindless television.

However, I should add that in the past week, I learned something I would rather have not known, something too large in agony, too large in reality. I did not hear what I longed to hear.  And I cannot bear both the speaking and the silence.  I know that my Savior can bear it, but I cannot figure out a way to lay the burden down.  So, amid all the sleeping and napping and dozing, I have sought the nothingness of eschewing all thought...even here.

However, one small thing both comforts and irks me.  And I wonder if the latter should be happening.  I wonder if it is merely another sign of how much my perspective is skewed.  Here is the thing:  I now have two glass pitchers that have GREEN tops to them.

I love the color green.  I just do. I love it in nature (especially all the lovely, rich shades found in moss) and I love having it on things that I use.  The sight of that particular color--nearly every shade of it--simply brings a bit of pleasure to me.  A while ago, I replaced my decades old Brita pitcher with one of the new ones.  Of course, I chose a GREEN one.  Each time I get it out of the refrigerator to use it or to fill it again, I savor the sight of it, of owning a GREEN pitcher.

When I was picking up my prescriptions, I saw this holiday item sale of glass pitchers and was excited to see that the soft rubber stoppers were colored.  I bought a GREEN one, since I actually do not own a pitcher any more.  I turned them sideways for the photograph so that you could see the pretty ridges in the glass and the rather helpful indented place to grip the pitcher.  What you cannot see is that there is a lip for easy pouring and that they are skinny enough to go in a refrigerator door shelf.  I found the first pitcher so perfect (I very much prefer glass over plastic any day), that I rashly spent another $5 and bought a second one.  My rationale was that I need to be drinking more juice, so I now have one for orange juice (no pulp) and once for cranberry juice (no sugar added).  Just opening the refrigerator door brings such pleasure to me at the sight of these very handy pitchers that are quite pretty and are a bit of GREEN in my kitchen.  Plus, by putting the cranberry one in the center, the light shines through it casting a lovely glow whenever I open the door.

When my blood sugar plummets, it is far better to use juice than soda.  So, now I can get to some rather easily.  Following the juice with nuts and cheese helps ensure the plummet is not repeated.  But, also, when I am shaking and sweating and scared, I find a small smile creeping across my face because that is what the sight of GREEN things do for me.

But they are just things.  Should not their color matter so much????

I am Yours, Lord.  Save me!

Saturday, January 14, 2012

Things are brewing...

Things seem to be brewing up in my head.  Nope, not some good thoughts.  That would be amazing, with the fog I've been battling.  Instead, what has been brewing seems to be some pesky germs.  Raging sore throat.  Stuffed nose.  Painful ears.  Now, a fever.  I suppose I shall drag my weary bones to one of those clinics I have heard about here that are a part of the Lutheran Health Network on the morrow.  Sandra texted me the closest location, but I could not motivate myself out the door soon enough tonight to see if I might qualify for some germ fighting antibiotics.

Here is my poor, snow-and-ice-encrusted puppy from last night.  He has not learned the term "time-out," but he has learned the phrase: "No poo-poo, no Momma."  Such words strike terror in my puppy.  But...well...Amos had not yet asked to go outside last night when I was trying to get him to do his business.  I just had decided he was ready.  Clearly, he was not, given that he had already endured one time-out session.  Poor Amos.  If I had not realized his entire coat was laden with frozen material, he might not have fared as well as he did after being bundled up in warm towels and held before the fire for a long while.  He just sat in the snow, not knowing what to do, since if he did not do something, I had threatened that he would be all alone in the kitchen.  Abandoned.  Separated from his beloved Momma.

Late last night, Amos did his bark/whine/growl as his way of asking to go outside and take care of business.  The entire process took but a moment or two.  The terrible battle that took place earlier, practically killing my poor puppy was entirely unnecessary.  SIGH.

Here is my beloved puppy this afternoon, longing with his entire being to be playing with his tiny canine house guest.  He clearly does not understand how fragile she still is, that she survived is a bona fied miracle.  Amos, as he is wont to do, stretched his body enough to peer at whatever has captured his attention.  If he were to study the matter, he would realized he could easily leap over the quilt-covered baby gate.  Thankfully, my puppy is but a young pup and has not yet developed all of his critical-thinking and problem-solving skills.  Still, it is very, very hard on him that the little mite of a dog he was playing with is now off limits to him. He doesn't understand.  And she smells very good to him.

I, for one, am glad that we are on the downside of puppy trauma.  Truly the little girl was critical.  However, Amos' male bits being frozen to his belly was hard for me to see, especially how long his skin remained rather red.  [Yes, it was hard to see because of the guilt I felt over having caused it.]  Perhaps the drama that always seem to accompany trying to play host has passed and the rest of the visit will be...smooth.

We saw a movie today: Iron Lady.  Meryl Streep is truly gifted.  Gobsmakingly gifted.  However, the movie was too sad for me.  Much of me wanted to leave immediately.  Much of me wants someone to wipe the memory of the movie from my mind.  This is because the movie is not so much about Margaret Thatcher's incredible life, but a glimpse of the ravaging of cognitive decline on such a formidable mind.  The loneliness of dementia/Alzheimer's/cognitive dysfunction is harrowing to experience and harrowing to see...if you are willing to actually look at it.  It is my experience that not many people are willing to do so.  Another movie title comes to mind (not that I saw it): Eyes Wide Shut.

We look, but we do not see.  We listen, but we do not hear. My personal theory is that in listening, at least in part, what we do is try to picture ourselves in the story we are hearing.  Somehow. In some way.  Think of the parables and how man spends so much effort trying to not just figure them out, but figure out what part, what role he plays in them. I suppose because man is all about trying to figure out what we must do.  Who is my neighbor?

Robert Coles, a child psychiatrist, has this fantastic book: The Call of Stories.  Another day would be the time to plow through its illumination in full, but suffice it to say that he talks about how we process our lives through stories.  His book about this arose from the shocking revelation that he was not actually listening to his patients.  He had to learn to listen to what they were actually saying, not what he thought what they were saying.

We tell each other--we tell ourselves, for that matter--stories.  The seminal, pivotal work of Elisabeth Kubler-Ross is based on this, really, when looking at grief.  She talks about how people will story their loss.  They will not always start in the same place.  The beginning of their story--even among those who share the same loss--can be as varied and idiosyncratic as there are people on this planet.  But the story of our loss--the telling of it--is how we can process and survive it.

I have wondered, at times, if this really is at the heart of why couples who lose children often break up, why marriages dissolve.  Both have different stories to tell even though they shared the same experience.  There has to be a sort of betrayal in that, the terrible realization that the very one who should understand does not really understand, does not wholly understand, because that person has a different story to tell. No matter how much we wish it were so, no one ever really shares the same grief, for no one ever really shares the same life, not even the person lying beside you for the past 65 years.

We tell the story because we need others to hear it, we need others to listen. Kubler Ross teaches the importance of listening to all the times we tell the story, that if you listen for a while, but are no longer willing to listen that 10th, 17th, or even 36th time the one grieving needed to tell the story, you have actually negated the help, the value really, of the other times you listened.  But listening repeatedly, especially when we do not understand the necessity of the repetition or the amount of repetition, is hard.

Again, it is merely my admittedly biased opinion, but I believe we are not always willing to listen to those stories of grief or loss or pain or illness because we do not really want to be in them.  And it is difficult to continue to deny that natural tendency to insert ourselves into a story of which we want no part.

The story I wished not to listen to today is a story too close to mine, too harrowing for it made real the fears I have, the things I cannot seem to have anyone else hear.  Except the person who watched me do so dismally on the cognitive assessment a year ago and the one who has spent the past year professionally listening to me and notices particularly the repetition of the questions I ask and how hard it is for me to grasp the things she is trying to teach me.  Not because I am not trying.  Not because I do not want to do so.  But because of the neurological disease in my body, in my mind.

And it was harrowing because of it is about a disease I fear is yet to come to me, yet to be added to the list of things wrong with my body.

My father can no longer feed himself; he does not know what to do with the food before him.  The fine mind that had him working on the first space shuttle program is no longer functioning even at a basic cognitive level.  Its autonomic processes are continuing, but the thinking, the processing, the connecting is gone.  I thought his mother was young when her mind fell victim to Alzheimer's in her late 80s.  My father is just into his seventh decade.  The leaving of his mind, however, has been a long time coming.  He was/is young for this.

Many years ago, we went to Wal-Mart on one of our $5.50 DVD hunting trips.  We always hung out at the $5.50 bin, but I would also check the $7.50 ones just in case there was a good find worth the extra money.  This meant moving among the racks set up around the bin.  That day, I had stepped away without my father noticing.  I would like to say that I will never forget the abject fear on his face, the terror in his voice as he cried out for me.  But I will.  [At least it is here, in my external memory, for me to hold.]  My father was lost and alone and disoriented.  But this is not what haunts me.  What I struggle to bear is the look on his face after he found me, realized where he was and what he was doing and becoming oriented once more.  He knew what was had happened, what was happening to him.  I suppose the blessing of Alzheimer's is when the patient moves beyond the knowing, when the patient forgets for all time that she is lost.

In psychological terms, what I receive when I try to tell the story of this particular loss is a Yes-But.  [And, yes, I know I am well versed in that response myself.] Yes, but you are still so smart.  Yes, but you are doing so well.  Yes, but you look so good.  To me, that is a denial, a rejection, and a dismissal of this very real, very harrowing battle that I am facing, a battle that is really but a small part of a larger war.  A war I know I will inevitably, inexorably lose.  Too young.

To me, there is an exquisite beauty in Streep's performance.  It was a honor to see her wield the gift our Creator bestowed upon her.  Her eyes, her hands.  Micro movements and micro expressions.  Harrowing ones, if you are willing to look.  I wonder just how many will only look in passing, walking out of the theatre remembering the life Thatcher lived, rather than the life she is living right now.

Still, I would have rather I had been a bit smarter about seeing that movie.  I wish that I had avoided it the way I have avoided the movie Momento.  I was not ready for it.  I am not ready for what is happening even now...especially because the wind is the only one listening to my story.

It should be a comfort for me that when I no longer remember that I am a child of Christ, He will remember for me.  It is not.  Not yet at least...I hope.  I hope one day, before I am lost for all time, that I find comfort in that knowledge.  For, now, I am still harrowed by the knowledge that if my cognitive function continues to decline in the manner in which I have experienced thus far, one day I will no longer even have that knowledge, that connection within my grasp.  

I am Yours, Lord.  Save me!

Is there a happy medium...

In the past six nights, I have had three migraines, three unbearable headaches, one scary episode of very low blood sugar, and one miserable episode of low blood pressure. Much of these nights also included trembling, sweating, nausea, and/or vomiting. In case you were wondering, I have not yet discovered the secret of being a suffering saint. I am wondering, at this point, if there is a happy medium between a godly example of a suffering saint and the disgrace of a miserable, wretched faithless sinner.

I have not had a nap in seven days either, so I am more exhausted than words can describe. I would proffer that I have done more work in the past seven days than in the past seven weeks. But perhaps that is a slight exaggeration.

Because my life is still that wild roller coaster ride, in the past few days, Amos fell down the full length of the main staircase and my visitor's tiny puppy was crushed in a very bad fall. Thankfully, it seems that she is going to survive.

Should I add that one trip to the emergency vet hospital meant a long slippery slide on snowy streets? Or perhaps I should mention that tonight I tried to commit puppy murder by hypothermia with a snow and ice encrusted Amos resulting from an insistence that he accomplish something outdoors his body was not yet ready to do? He seems to have forgiven me.

These days I'm actually in need of copious amounts of forgiveness. And grace. And mercy. SIGH.

Because I've been on my poor foot so much trying to be at least a decent host, Monday night I was in such agony that I broke down and purchased the better walking cast from The progress in the healing of my foot had actually regressed some, with bits that shouldn't be moving starting to move around again and the aforementioned pain. While the jury is still out regarding the new walking cast, I will say that my foot is more stable than it has been since I smashed it back in September. Perhaps there is hope for my poor appendage, but I am fairly sure the light at the end of the tunnel is still a far ways off.

I would be remiss if I did not add that in the past five days I also had some delicious food, some generous help with cleaning, and some thoughtful additions to making my abode homier.

All in all, if you were to give me a report card on my current attempt at having a guest, I would probably receive a big fat F. I simply don't know how to rest and eat the way that I need to do so in order to deal with a body whose warranty has so obviously expired and still feel like I am being a proper host. I guess I need an instruction booklet on how to accomplish that successfully. Well, a booklet and probably many moons of study and practice. And sticky notes about the house. And several reminder timers in my iPod. SIGH.

I am Yours, Lord. Save me!

Sunday, January 08, 2012

Uncomfortable math...

The other day, I picked up a retail value of prescriptions for three months totaling: $4,005 (rounded to the nearest dollar).  Strangely, that included three generics, which I do not particularly care to take but do because of the cost.  Come August 1st, my insurance ends and the $517 I paid in co-pays will rise to that retail amount.  I simply will not be able to afford my medications.

I have been trying to find a reputable discount prescription plan, for a monthly fee would be worth it, given what I need.  But most of what I have found have been ones with complaints and poor reviews.  I checked out Wal-Marts $4 generic plan and two of my generics are not on it!  I honestly do not know what I will do.

I have tried, from time to time, skipping some of my medication, just to see what I could go without.  I was hoping, perhaps, the Singular since that is not a generic and is expensive.  But missing a single dose leads me to waking up coughing and tipping over into an asthma attack.  Since my asthma has been ever so much better here, I tried again last night.  Same results.  Lots of nebulizing needed for that bit of folly.

Celebrex is the single most expensive drug at $905, but without it I am completely non-functional with arthritic pain.  Missing a single dose of that is enough to make me have thoughts of becoming a junkie.  A second dose missed leaves me huddled on the floor.  Really nothing else helps, but I suppose I could just take a prescription level of Ibuprophen and see if that takes the edge off of the pain enough to endure it.  Naproxin, Aspirin, and Tylenol all do not touch the arthritis at all.

I was very dismayed to see that the generic of Imitrix, which is what I picked up, was only $100 less than the Celebrex.  How can I keep taking the migraine medicine at that cost?  Of course, if I still have migraines by August, I might just have thrown myself off a bridge somewhere and all of this would be moot thinking.

The Theohphylline is $485.  Surely I cannot go back to fainting all the time.  Though...perhaps I could since fainting does not hurt, per se, except for when I hit my head or something else.  I have this at the top of my list of what I might possibly skip.

The other wildly expensive--in my opinion--generic is Acarbose.  It is $492.  However, unregulated blood sugar is probably not an option.  I wonder if I ate only protein, avoided every sugar and carbohydrate known to man, if I could go without this prescription.  Of course, we know how much will power I have.  Would I ever be able to manage that?

Probably the most likely candidate to skip is the Lipitor, which just had its patent end.  However, that generic was $433.  In my opinion, that really is not so much savings there for taking a generic.  This I take actually for MS, but I have terribly low good cholesterol, so its benefits are multiplied in me. And I do come from a generational history of heart disease.

I know that I have seven more months before this is a problem, but it is one I have struggled not to worry about since I first lost my job and the COBRA clock started ticking.  It is one thing to just eschew doctor's appointments and try to avoid as much medical care as possible.  It is a completely different thing to not take the medications that make my life as endurable as it is.

Yes, in the middle of last night, while nebulizing, I sat in front of the computer and looked at the math.  No matter how I try to make it work out, it does not.  Even if I went back to fainting and gave up the Lipitor as well, I still cannot afford the over $3,000 left.

Is it not insane that only one of my medications is less than a month's mortgage payment?  Or put it this way, I could pay my mortgage for ten months for the retail cost of prescriptions I carried home this week.

It is not that I do not believe that God cares for me, but I cannot see this kind of money coming my way...$16,000 or so a year for prescriptions alone dropping in my lap.  Having worked my whole life--apart from those periods of unemployment--and having had health insurance my entire existence, I cannot fathom the life I will be beginning come August.  [It is hard enough to swallow the end of unemployment without a single nibble to any of the resumes I sent out in the hope there could be a job for me.]  And I cannot see a way out of this mess.

I truly would have no real quality of life without the prescriptions and trying to pay them will drain my very meager retirement funds, which I will be losing a significant portion to early withdrawal penalties, in just a short time.

Math was never my favorite subject.  These days I loathe it.

I am Yours, Lord.  Save me!

Saturday, January 07, 2012

Roller Coasters...

With the Imitrix, I do have some time that is headache free, but only respites.  Since the directions seem pretty specific about how much and how often you can take the medication, I am also still trying the extra strength aspirin and ice packs, the combination most recommended by others who have battled hormonal migraines.  And, yes, I am still that rather base form of myself.  Truly, I never would have thought that migraines would be so much worse than anything I have experienced.

It would be a gross understatement to say that I am exhausted.  I sleep in spurts, awaking to stumble down stairs for a fresh ice pack or for more pieces of this ginger candy that I found on line.  To say that it is strong would be another gross understatement.  Perhaps I am mistaken, but I do believe that it is helping my nausea. So much so that instead of ordering another bag or two, I took the far, far more economical route over the long term and ordered a case of bags.  So, should you visit me, you are required to consume at least one.  That way, everyone in the house has the same...strong...breath!

I have not really done all that well on increasing my water intake, all liquids for that matter.  Is it possible to be too tired to drink?  I have not really done all that well in transitioning to 6-8 small meals a day.  However, I have significantly reduced the amount of what I eat each time that I eat.  Yes, the glutton in me is finding that rather difficult to do.  And when I have had a more normal sized meal while eating out, I have not eaten again afterwards.  I will say that I have not had an early morning writhing in agony session since Sunday, I believe. I have had two uncomfortable and nauseous times, but those were much more manageable.  Perhaps I should have realized that I need to make a much slower transition, need to give myself more grace.  Perhaps I should allow that it is okay for me to struggle not merely against the change in eating but the necessity of doing so and the future that most likely awaits me and my innards.

Aside from that future, I am worried about the immediate future.  In less than a day, my guest will be here and not a smidge more cleaning has been done.  Nary a wipe or sweep or scrub.


My pastor talked with me about names the other day.  I would give most anything in the world to have his words written, but, alas, he was speaking about something that was on his mind, not a sermon he had written.  So...fair warning...another butchering the sweet, sweet Gospel is forthcoming.

He was thinking about names.  Names, he said, establish a relationship and an identity.  They form a bond, a connection, between people, especially between the one who gives the name and the one who receives it.  So...don't laugh at my appalling ignorance, but he asked me if I knew what Jesus means.  I told him that if I ever did, I do not now.  He told me that Jesus means: He saves.

I then asked him if Christ meant anything.  He told me that it was not a name, but a title, a proclamation of  Jesus' status: His royal lineage, a king.

So, my pastor was thinking about the fact that in our baptism, Jesus gives us His name.  He places His name upon us and, by doing so, establishes this relationship, this bond, this identity.  We are family.  We are family to the One who saves.  And in giving us His name, He also gives us His status: We are Christians.  We are royalty.

So, when I call upon the name of Jesus, I am both asking for salvation and proclaiming that I have been given salvation because He is the one who saves...saves all...saves me.  When I identify myself as a Christian, I am proclaiming that I am royalty because of the relationship established when Jesus placed His name upon me.

Upon the sinner.
Upon the one who wails and worries.
Upon the one who struggles to believe, to accept the wonder, the miracle of every for you of the sweet, sweet Gospel might also be for me.

I have written why I gave Amos his name.  Thinking about what my pastor said, in giving him the name I chose, I was establishing a relationship and identity for him.  He is my beloved puppy dog and he is a gift from the One who promises that there will one day be a time when the plowman will overtake the reaper and when the mountains will drip sweet wine.  He is a tangible, daily, loving reminder of the promises of God.

The name of Jesus is a tangible, daily, loving reminder of the promises of God.  How is a name tangible?  Because not only did Jesus give the sound, the knowledge of His name, but He gives His very body and blood, the tangible embodiment of His name, each and every time we come to the altar...or the altar comes to us.

I hate roller coasters.  If you know me, you know this.  I avoid them, would never venture upon them at a theme park.  Yet I live on not one but many:  digestion, blood sugar, hormones/emotions, and now migraines.  And it has been firmly established that I am no suffering saint.  I do not have my first act be to call upon the name of Jesus.  Truly, it is my fifth or sixth act.  I tremble and shake in fear. I drown in misery. I despair over how I will face the next minute, much less the next day or month or year.  I castigate myself for my lack of faith. But at the beginning, middle, and end of my wild, horrid ride, there exists within me a great longing for the Living Word, particularly the words of the Psalms in my ears, poured over me and spoken to me.

This is not because I am a suffering saint.  It is because I was given the name of Jesus.  It is because of a relationship established by Jesus, not me.  Established by the God who established the convenant with Abraham, not Abraham.  Established by the God who came to man, not man to Him.  Established by the God who lived and died and rose again to save man, a sinful man incapable of saving himself.

It is not me, but Jesus.
It is Jesus, not me.
Jesus for me.
Even on roller coasters.
Even in my weakness.
Even when I am my basest self.

Because given to me is the name of Jesus.  The One who saves.  Active.  Certain.  Promised.  The One who saves, not the One who might save.  The One who saves me!

Lord, I believe.  Help my unbelief!

Friday, January 06, 2012

May it last...

Christ be praised!

At the moment, I am headache free, though still groggy from my "cure."  The surgeon called in Imitrex for me yesterday evening.  The first dose did not stop the pain, and so I took a second dose.  You are only allowed four doses per headache.  I was already worrying about that.  Then the muscle cramps set in, a side effect of the Imitrex, which resulted in more weeping and wailing on my part, along with heaping amounts of despair.  Then, I thought perhaps a Zanax might help, since a single dose basically knocks me out and leaves me groggy for nearly 24 hours.  I finally fell asleep and managed 5 hours of uninterrupted rest.  [Though, I did have this rather disturbing dream where I left Amos behind at the house alone while I took a bunch of low-income girls camping for a week at a cabin some wealthy person let us use.  We ate French toast for every meal.] I awoke four more times after that spate of rest, but I slept most of the time between 12:30 a.m. and 11:30 a.m., which has helped my perspective move a bit away from the gutter where it has been.

Yes, muck and mire have been covering all my thoughts.

Last night, I managed to successfully make the rice pilaf packet I purchased.  It required sauteing the mixture in butter first and then cooking it in a sauce pan with a lid.  I was very thankful, at that moment, that a few years ago my mother purchased two sauce/frying pans for me, both of which have glass lids.  This was the first time I used one.  When I moved, I actually contemplated donating them.  Thankfully, I held on to them! There was one bad moment when I couldn't remember if I had put one or two cups of water in, but I guess correctly when I thought the liquid looked only to be about a cups worth.  I need some sort of counter I can use when measuring things so that I am not relying on my brain.  Making the pilaf, even though it was a mix, was hard work for me!

So, around 10:00 last night, I had a 1/3 of a chicken breast and a small bowl of rice.  Incidentally, that is what I had for breakfast today.  [Sadly, my latest batch of grilled chicken is all gone now.]  The rice did not seem to bother my innards, nor did I have my early morning writhing episode.  I suppose you could say that this is thanks to my sister and my mother!

A part of me wants to race to the store to get more of the rice packets.  But since I made two trips to Target for prescriptions in the span of just two hours, I am more inclined to engage in a thorough investigation of how it feels to lounge in the GREEN chair without having a migraine.

In case you were wondering, rice flour is NOT a good substitute for flour in deserts.  I had purchased these oatmeal cinnamon bars that are gluten free, having oats, rice flour, and soy in them.  They were iced and everything, but eating one was like eating oatmeal flavored cardboard.  I mentioned the culinary debacle to Sandra and she suggested Amos might not object to them.  She is probably right.  I shall have to investigate that, maybe see if they could become training treats or something.

Of course, that would mean I need to actually train him some more.  You know I keep waiting for Sandra to  do it for me since she is the greatest Alpha Dog I have ever met!

Amos is very much enjoying the new mattress.  At this point, I am wondering if we need a larger bed...not that I would do such a thing.  He has this decided preference for the middle of the bed.  And somehow he has this strange ability to stretch himself out much, much longer than he actually is.  I find it to be a fascinating phenomenon.  I mean, if you look at him on the ground, for example, you would never have suspected he would have been able to get the butter off the counter like he did.

While you cannot really see it, I am off to the side on the left, lying on a mere sliver of mattress.  What you can partially see is that he has a paw holding on to his Flower Baby as he sleeps.  See the stem sticking up beside his head?

The plain white cotton blanket next to him is how I try to keep warm. I wrap myself up like a burrito to try and trap some body heat when the chills begin and then pile more blanket atop me.

It is very strange for me right now.  I am fearful this non-headache-pain-free existence is not going to last.  Yet I am also marveling how much better life is without the agonizing explosions going on inside my skull.

Ethel has been in pain.  Would you pray for her as you have prayed for me?

I am Yours, Lord.  Save me!

Thursday, January 05, 2012

Not quite yet...

I still cannot really tell you about the mattress, for my head still very much objects to its presence in this world.  Right now, so do I.

A short while ago, Sandra went to Target with me via Sprint while I picked up a new prescription for migraines that does not have caffeine in it.  Here's hoping that although you are to take it at the onset, the medication still might have a positive effect.

Sandra had a good idea about my failure over drinking water: Koolaid.  I had but two options, either cherry or grape, so I bought three packets of cherry.  I also bought a pitcher since I actually do not have one.  I was pleased that there was a glass one with a green top left over from Christmas for just $5.  That's my kind of price point.  I am trying an experiment, though.  I did not put any sugar in the Koolaid.  The cherry stuff is kind of strong.  So, I am wondering if just the flavoring alone will suffice...if ice cold.  Many drinks are tastier, in my opinion, if they are ice, ice, ice, ice cold. Just short of actual freezing is good to me!  Plus, any drink out of a container with GREEN in it will most certainly be good.

I also picked up some cranberry juice, the tart, plain stuff.  I forget that I like to have a small hit of that.  If I were to drink some cranberry juice, double my Gatorade, and drink perhaps two cups of cherry water, then I would have made a significant step forward.  I also thought I should get back to drinking tea, since I actually know how to properly brew the stuff.  It is just that I forget these things...cranberry juice and tea...that I could be doing that would be less work when it comes to changing my intake to a mixture that is easier on my broken innards.

My sister also had a good idea for how to get more sodium, since I really am failing at that, too.  She suggested those flavored rice packets.  [Surely I couldn't ruin those, right?] Now, as a youth, I had so much rice in my life that some time around 30 or so, one day I awoke and realized that if I never had another grain before I died, I would still have a great culinary life.  From then on, no rice for me was my M.O.

Perhaps this long hiatus will make rice more palatable to me.  But, in any case, my sister pointed out that those rice mixes are very high in sodium, yet not overly salty in taste.  You see, I cannot just douse my food in salt.  I spent most of my adult life not even cooking with salt.  Unless a food is supposed to be salty, such as bacon, I truly struggle with the taste of salted food.  So, I really do need that stealth sodium...such as that most wonderful Panera salad that has 1320 mgs in it!  Even a Taco Bell bean burrito has 1,100 mgs, I believe.  In any case, I could have rice with my grilled chicken as an alternative to having potatoes.

I have been rather morose, extremely grumpy, and downright discouraged.  Frankly, I am a bit appalled at how poor a migraine patient I am.  I honestly do have a high tolerance for pain, except for, as it turns out, pain in my head.  Even Amos is getting tired of me.

I would really, really, really, really, really, really like a bit of relief....

Wednesday, January 04, 2012

Perhaps it is ending...

The migraine is over, but I still have this lingering headache.  I am hoping that by tonight it will be gone, gone, gone.

I cannot say for sure how sleeping on the mattress was or will be, rather.  I forgot my breath right strip--which is very unusual for me--so I did not sleep overly much between that and the headache.  However, while sleeping on both sides, I did not have pain in my arms.  I suppose you could say that I am a bit hopeful.  I have 30 days to decide if I want to keep the mattress.

Amos LOVES it.

I have company coming on Sunday, so the house needs to be cleaned.  I am rather fatigued after the agony of a three days running migraine, however.  Today, I cleaned the main stair case (the steps get dirty even though I do not use them), took out all the recycling that had accumulated on the back steps, washed, dried, folded, and put away three loads of laundry, and dusted my bedroom ceiling fan.  I have been seriously contemplated polishing the silver (it really needs it), but that is a standing job for me and standing for long periods hurts so much and makes me even more tired.

So, right now, I am ignoring the silver and enjoying a fire, hoping against hope that I might have enough of a respite from pain in my head to actually sleep this evening.

Before Sunday, I would like to:

  • clean the bathrooms (including the basement sink and toilet)
  • clean the floors (sweep, vacuum, and steam mop)
  • dust...well...everything
  • give Amos a bath
  • polish the silver
  • scrub the kitchen sink
  • dump ashes down the chute in the fireplace

Doesn't that make you tired just reading those chores?  It sure does me writing them.  Too bad I cannot train Amos to clean.  About all he does pre-clean dishes for me.  He is particularly skilled at pre-cleaning the crusty stuff left over from chicken enchiladas.


Tuesday, January 03, 2012

And more...

Last night was truly the worst I have ever experienced.  Even trying to find a comfortable spot for my head on a down pillow felt as if I was lying against concrete.  And it felt as if any moment it was going to explode from the pressure building inside.  Inside. Outside.  Pain all over.  Specific. Diffuse.  Agony.  I do not know how anyone lives with regular migraines.

Tonight, I am better, though my headache is still here.  For a while, I had hoped the easing and other symptoms meant that it was passing.  However, heat and aspirin, two suggested remedies, have not really banished this foe that has felled me so low.

So low.

The miracle mattress arrived today.  Perhaps, my high hopes for better sleep will not be misplaced.  Perhaps.

I wish I were stronger. I cry was more faithful than desperate.

Lord, have mercy...even as I begged for my life to have ended last night...even as I did not think I could make it one minute past 4:30 a.m. today...even as watching the clock turn round again was no victory for hanging on when I was sure I could not.

Christ, have mercy...even as I am frightened for the support I have lost right now...even as I stand alone facing battles on so many sides and something I fear will fell me further.

Lord, have mercy...even as I head up the stairs in fear, terrified at the thought of another battle of pain or nausea or both....even as wish for a moment free from this wretched body of mine...even as I cannot imagine that You created it for good for me.

In sin, I deserve the agony. In sin, I deserve the nausea. In sin, I deserve the fear.  Yet I beg for mercy...even if that mercy is merely the grace to endure another night.

I am Yours, Lord.  Save me!

Monday, January 02, 2012

One of the great mysteries of the universe...

Why is snow ever so much better than wet grass?

Amos, my darling puppy, is just plain terrified of wet grass.  I find great humor, at times, watching how he tries to stand on just two feet whilst looking about for a place to do his business.  Even funnier is how he will straddle the corner where the sidewalk turns so that he can do his business in the grass but keep all four paws off of it.  He will even take a running start to leap from the sidewalk to the mulch in the flower bed closest to the sidewalk. Of course, as his puppy momma, I also look upon with great sympathy, wishing the experience were not so agonizing for my beloved puppy.

But riddle me this:  how is it that wet grass is the worst thing on the planet while snow is the absolute best?

Amos frolicked about the back yard tonight for nearly an hour before I could get him to come back inside. [I had no desire to run around through the snow to scoop him up.]  He chases imaginary playmates all over the place, leaping and bounding from spot to spot.  He buries his face in the snow and flicks great big clumps in the air and tries to catch them in his mouth.  Truly, not one inch of the back yard is marked by unbroken snow at this point...even though the snow fell just this afternoon  Wagging his tail quite vigorously, Amos takes utter delight in the snow-covered grass.  His joy is rather infectious.

Wet grass is cold.
Snowy grass is even colder and is at least equally wet.
Wouldn't you surmise that a puppy who would do ANYTHING to avoid stepping on wet grass would eschew all contact with snowy grass?

A veritable mystery.

Something I wish I had more of...


Day two of a constant migraine. Taking Tylenol, ibuprofen, aspirin, or naproxen has no effect.

Eating was better yesterday. Today I will not know about until tomorrow, especially since I dared eat pasta with my grilled chicken. I was wondering if angel hair pasta with lemon and garlic Alfredo sauce might have curative properties if consumed in small quantities.

[By the way, if you grill chicken when it is in the low 20s and snowing outside, you need to add to your cooking time.]

Yesterday, I had four smaller meals, but the same things I am used to eating. I have doubled my usual Gatorade intake, but am still failing at drinking more water. Ugh.

I started both days with a protein fest: bacon and fried eggs. Maybe that is key, eh? Starting each day with bacon?

The headache is wearing on my attitude. Truly, I would be wailing and stomping my feet at this point except that I am fairly certain doing so would make my head hurt worse. The only thing that has marginally helped has been ice packs. The blasted things keep melting though. One might begin to wonder if I am hot-headed!

Poor Amos. Having been pushed away from my torso so much in bed of late, he has taken to curling up around my head on the pillow. Of course, I don't want him touching my head either. He tells me he is confused. I reply that he is not the only one. It is rather sweet how much he's wanting to comfort me.

And mercy.

I could use them both.

I am yours, Lord. Save me!

Sunday, January 01, 2012

Lord, have mercy...

I get to start the new year with my blood sugar crashing, quite ill and afraid.  I suppose I should instead write that I get to start the new year calling upon my God for mercy?

I thought I did better today.  I was greatly mistaken.

Meal 1
custard dish of potato wedges (plain, no sauce)
sauce dish of dried fruit (bananas, cherries, and blueberries)
salt dish of sunflower seeds

Meal 2
custard dish of chopped grilled, herbed chicken with a bit of mayo and lemon juice
sauce dish of baked cracker chips
Dr Pepper

Meal 3
custard dish of spinach and artichoke dip
cereal bowl of tortilla chips

Meal 4
1/2 Scotch egg
small wedge of pound cake

After the third meal, I started to feel incredibly full and uncomfortable.  I waited three hours instead of two before eating again.  By the time late evening rolled around, I crawled into bed early (for me), with my abdomen quite distended and extraordinarily uncomfortable, and eschewed all thoughts of any celebrating of the new year.

Now, a couple of hours into it, I am trying to figure out what in the world made me ill and why my blood sugar plummeted.  Again, it was rather low before I put 2 and 2 together because I was already feeling quite ill.  When I realized I was nearly two weak to make from the bathroom back to the bed because I was trembling so much and highly anxious and my cold spell had turned to sweating, a lightening bolt of understanding struck me and I raced downstairs to the kitchen for my meter.  Seriously, I am stupid. I should  have just used my basket in my bedroom.  There is no need, really, for me to measure my blood sugar at these times.

I grabbed a Gingerale (I need to purchase some juice) and sunflower seeds (I am certain I did NOT have enough sodium this day) and then, once I was feeling less like the world was fading away, I had some applesauce.

Now, I am waiting for all that horrible combination of overwhelming dread and fear and anxiety and trembling and weakness and sweating to completely pass so that I might try, at last, to fall asleep.

Lord, have mercy.  Christ, have mercy.  Lord, have mercy.

I am Yours, Lord.  Save me!