Pause Button

I had a friend tell me recently that she wished there was a pause button to life.  That she could tell the world to stop spinning around her for a little while, and then she could catch up. I think we've all felt that way sometimes, but it occurs to me that I've had that pause button pressed so many times.  It's called Lyme, and it pauses everything in your life.  Unfortunately, though, it does NOT pause everything else.  While you sleep, while you are ill, while your family is ill, while you stay at home on the couch, everything else moves around you. It's like a strange variant of Sleeping Beauty.... she doesn't age, but the dust accumulates, she doesn't move, but the world around her sleeping place whirls and changes exponentially.  A fast motion recapture video in the making. 



This week, this re-experience, has once again shown me that.  Baby e is sick  Not regular sick.  He keeps patiently shaking his head as I ask what is wrong:  Does his head hurt?  No. Does his stomach hurt? No. Gut?  No. Ear? No.  He patiently keeps shaking his head, ever and over and over. 

Why am I looking for a reason for him to feel bad?  Because I know what it Means when  one of my children starts running fevers of 102, 103 with no visible reason or illness but general malaise. And while the little captain has thus far avoided all the symptoms his siblings had as babies-- the 103 degree fevers once a month,  the strange spots that look like thumbprints of redness that don't  rash or seem to bother them, yet move around their bodies,  the constant illness, the dark circles under their eyes-- he's started having more and move illnesses lately, and is beginning to show the signs.  This, for a mom, although inevitable to our household perhaps, is heartbreaking.  To know that once again, this poison is circulating in another sweet little body, is a personal, private tragedy.

and yet, I know that, even knowing these difficulties, that my little ones chose to come here to Earth and chose to participate, not only in life, but in life with me, a very imperfect mom and rather bad housekeeper, who does not craft with them daily and go on hike and expeditions.  They saw, as spirits prior to joining us on Earth, the whole picture, the goal, and knew that in the end, the monthly pain and the constant sickness would be worth it.  They chose to come, knowing that we might not be those people who can say "you TOO could grow up to be President!"  Not these kids. We don't tell ourselves that we can do ANYTHING.  We do, however, tell ourselves that any path our Father has given to us, we can follow, and follow with great faith.

I came across a quote today on a mommyblog, and I wish I could quote the whole conference, but I can't find it (yet).. However, the quote was from BYU women's conference, from Elder Bednar. (hopefully the link will work, lol)   It is as follows:

Elder Bednar  2011 BYU Women's Conference.

“I believe many, if not all, of the most satisfying and memorable accomplishments in our homes, in the Church, in our jobs and professions and in our communities will be the product of this important spiritual pattern — of small and simple things,” Elder Bednar said. “We should find great comfort in the fact that ordinary people who faithfully, diligently and consistently do simple things that are right before God will bring forth extraordinary results.” ...

“The spiritual pattern of small and simple things bringing forth great things produces firmness and steadfastness, deepening devotion and more complete conversion to the Lord Jesus Christ and His gospel,” he said. “As you and I become increasingly steadfast and immovable, we are less prone to zealous and exaggerated spurts of spirituality followed by extended periods of slackness.”

Ordinary people doing the same things over and over, with the intent to become closer to God-- this describes Mommyland perfectly, if we're trying to do it correctly.  Faithfully, diligently, consistently.  I might not have, for example, the most magnificent vacations spanning every church history site in the US, or the magical FHE's that are passed on  by my children and their children's children for generations to come.  We might, on occasion, call our Monday night endeavors Family Home Fighting, not Evening.  BUT, by consistently doing all the things we are trying to do, we are becoming consistently, perhaps incrementally, better and better at following His way for us.  And perhaps sometimes those increments seems infinitesimal  in comparison to the swirling of the world around us,  like that pause button has been pushed. Like running through knee deep water at the seaside.  But we are growing spiritual muscles by simply sustaining the pace, however slow it may be.

I'm heartbroken that my baby son has begun to show little spots that look like my coinfections, that his dark eye circles show even while he takes four and five hours naps these past three days.  But as long as I can teach him, by word and example, to keep moving one small and steady step at a time, together we can rejoice in being ordinary followers of Christ. And that will be enough. 

Shaky Shaky Shaky

Ok, so let's talk about the palsy bit.  Really.  The shaking hands and fingers and legs and stuff.  Not everybody who has Lyme gets this, but it was one of my first symptoms.  It came, lasted for years before we figured out what was going on, and then went away....I thought for good, I thought, I conquered this thing. YAY!

Only, it wasn't gone. One of the weird things with Lyme is that when you're in a good treatment, often your symptoms reverse order in their process away.  Weird neurological stuff, I personally have no idea the medical reasons, but something with the plaque in the brain, yada yada.  And sure enough...back came the shaky hands. One hand worse than the other for me... all my worst symptoms are all on my right hand side, and again, no real reason we know why.  Regardless, once again I got the palsy thing, and then it left.  

Except, it didn't. It was back last fall, and was one of the reasons I began searching for a doc that would do IV therapy. I found a kind one in DC area, who was reasonably well read on the whole issue, and gave me a couple of months of IV.  I knew it wasn't going to last forever.  Seriously, I know, at this point of the chronic infection, it's not going anyplace.  But I figured, maybe a couple of good years, then I do IV or combination oral antibiotic therapy again, no big whup. 

That was December.

My palsy hands returned three days ago.  So....five months.  5.  Not even six.

This is a major setback.   I'm not sure what to do now.  I'm loathe to even talk about it with Sir.  Frankly, the conversation with Sir will probably go like this-- "Sweetheart?  I think the palsy in my hands is back."  Sir: "cool."  That's it, basically.  That is the convo.  He's not really a talky type.  He'll process it in his own time and get back to me with a plan.

But in the meantime, I am expecting what comes next.  The next part is the leg.  My right knee will begin swelling more than usual, despite the lymphedema stockings and redi-wraps.  I will spend more and more time asleep... which has been happening already.  Already I've seen the nasty mock-sinus infections returning.  So, what to do about it?  What to do before it comes roaring in, a private tornado to my mind and soul?



Rage against the dying of the light is correct.  Rage, Rage.  My mind, my creativity, it is my light.  This thing has tried to steal my words, my poetry, my music.  It has tried to steal my relationships. It has tried to steal my joy.  but I'm stronger than any of these myriad bacteria which infest my body and mind. 

One of my greatest capabilities, for good or ill, has been defiance of will.  Hopefully, I have learned to be courageous instead of merely obstinate.  I keep my will my own, while submitting my Will to my Heavenly Father.  He has never given me this pain for more than I could bear.... although the last pregnancy was close, and often, like many others, I wish He didn't trust me with quite so many adventures. 

I figure, in the end, if I cannot sing, I will write.  When I cannot write, I will paint, and when the words blur together, I will read.  Thank heavens there are good audiobooks available, although I'll probably have to pay off the library fines my children have incurred by losing a couple more books this month, including one we donated to the library in the first place.  (So I have to pay the library triple the cost of the book, for reshelving fees, for a book I decluttered from my bookcase. Really.)  When I can no longer stand up to clean my house, I will roll and clean it halfway (who am I kidding... what's halfway from the third I already do?) and then when that's impossible, I'll be even more grateful for my chair lift and the housekeeper I will find someday.  hopefully by then, Mr e will be in preschool, so when I sleep all morning by accident after the kids go to school, he will be in no concern or danger and perhaps will still be learning something. 

My dearest fear, though, is for my beloved E and A.  They see this constant worry and struggle, and they know this same bacteria is lying partially dormant, partially attacking in secret, in their own systems.  They know what is coming.  Evva asks me, "Mama, do you like being a Mama?  Is it too hard?"   Already she is beginning to see the differences between the way we live, and the way her friends live.  Our house is not as disgustingly dirty as Sir thinks it is, nor is it as clean as I would like... especially now that the Captain is potty training, sometimes inefficiently.  But, seeing how her mother struggles, even when I assure her continually that, yes, I love being a Mama, yes, it is hard but it's a good hard (mostly), she knows, all the hard she already feels is going to become amplified by the years and bacterial overgrowth.  How can she begin to think about someday having a spouse, having children, when she will by then know that she could share this sickness with them as well?  But how could she consider anything but the joy of a beloved and motherhood, even in all of the extremely hard parts? 

My goal must be to rejoice in motherhood, that my children see me bearing my trials, but know that they are not among them.  They must always know that they are firmly on the blessing side. 

I've been missing.. but not totally...

So, my computer exploded. And the cobbler's children have no shoes, ie Sir has been really busy with working on other computers and software, but not the desktop yet. So I have to goof of on the laptop...which you Know is a problem  because little Mr e loves the great sound the keys make when he slips him fingernail under them and flicks them off "click click click" onto the floor. Sir does not like that sounds as much as little Mr does.  I'm typing on a keyboard that has three keys missing as it is.... thankfully not crucial keys, but we think the baby ate them.  So.. late blogging.
But I do have a great website to share... I've been loving it all morning and I couldn't wait to blog about it.  I LOVE this site.  LOVE it.  Am so proud to think of the sisters working on it and the good work they are doing.
What is it about?  Redefining our personal Beauty not on our body shape, size, weight, or outward appearance, but on our divine nature and true worth.  But in an intelligent, literary way, scientifically showing and explaining the comerical statistics facing our children and selves daily, objectifying women and even little girls.  And  so well done that it's not only readable but enjoyable.



Want to read it yet?  Hope so- you won't be disappointed, you will be fascinated, and you might change a few bad habits for ones that make your heart and emotions sing!



Here you go:
http://www.beautyredefined.net/

Enjoy!

Things I am thankful for...

continued.  .....

elias loves the 8:30 train.  It goes behind our house, and just for us, carefully blows its whistle.  Ok, not just for us.  but when you have a small boy who said "freight twain," before almost all other words, the effect is the same. Every morning, afternoon, evening, when the whistle blows, he freezes in place, says "SHH~!!  mama. Fwet Tain.  SHHHHHHH!!!" and listens to hear it rumbling past. 

I am honored to hear the train.  I am honored to hear the baby hear the train. 

I couldn't put it better myself...

So I won't....  My friend Heather O wrote this about dubious nutritional supplementation and her ideas about it. I'm sharing it because I think it was brilliantly done.

http://livingwithpkd.blogspot.com/2011/03/seeking-for-alternatives.html

See you on the other side....

Don't worry. I shake it off fairly well. And I talk a good game... Nothing like a chronic illness to make you really good at saying, convincingly, "I'm fine,"  when you are truly, desperately not.

I'm one of the lucky ones. I do not get suicidal.  I have family nearby who are loving and supportive, if perhaps very busy with multiple new babies and their own nutty lives.  I know how much my children depend on me to be the somewhat "normal" one in our phsycological home outlook. My husband recently (2 years past) resurfaced from what our 9yr old calls, "The Great Depression,"  (not realizing how ironic that is, or perhaps she does, seeing as she is astonishingly astute at her history homework)  which lasted five years, and, upon reclaiming his role as a non-couch-potato head of household, has set about carefully correcting us of all the wrongs and bad habits we have acquired in his "abscence."  He still has no idea how deeply the impact will be psychologically upon the children. Nor do I, but I fear it daily. He sincerely sees it as no big deal that they thought we were going to divorce, that during my sickness in pregnancy with baby e, that E thought I was going to die, that everything we do and say becomes picked to death by his corrections....but, I see it differently, and this is my blog.  I ain't no Pinoeer Woman, and Sir is no cowboy.  I hope to be NieNie someday when I grow up, but in the meantime, we suffer a lot of perils and trials.  One of which is threatening to consume me at the moment.

Of course, I'm talking of depression.  Mommy depression is a different thing altogether.  It comes in so many different forms.  It suffers loudly and violently in some, quietly and nobly in some, and the rest of us plod about as best we can.  It touches every heart within the home.  My baby pounces on my lap and says "WAKE UP MOMMY!" My kids are late to activity days, scouts, and clogging, because I can see no real reason to get up to do anything. No matter how my sweetheart (and he really is, I love him dearly) attempts to provoke change, I seem incapable of moving and changing.  Although, I did do dishes tonight. But, though I am trying desperately to do so, I find no joy in laundry, or mopping, or wiping things, or dishes, not even the pleasure of having a clean countertop once more.  I find little joy in anything but books and my children, and when I laugh with them, Sir tells me that we're being too loud and loudness ruins the spirit of the home. I am trying to learn to laugh quietly, and it ruins my laughter.

I realized, today, two important things. 

First, I am an adrenaline junkie.  Most adrenaline junkies jump out of buildings, or fight fires, or set fires, or learn to ride horses bareback, or something useful.  Me, I get places late.  Why?  It's not until the adrenaline of OH MY GOSH, WE'RE GOING TO BE LATE kicks in that my eyes and heart open wide enough that I'm alert to drive.  Adrenaline Is my caffeine.  I'm not saying this is healthy. I figure, though, that every bad habit is perpetuated for some reason, some pleasure, conscious or subconscious, that we get out of it.  And, cussing myself as I drove E late to clogging this afternoon, having woken at the last moment from a nap with mr e, I began to ponder--- what could I possibly gain from being late?  It makes me so jumpy.  There's that rush of frustration and adrenaline that gets you there, but it's too late to be on time or early, or useful in most instances.  But it's not until I am late that I get the push to actually go. 

So, today, big revelation, I think I figured out why.

Second big insight:  The medical bills are eating me alive.  The Lyme and lymphedema are eating my literally, but figuratively, from the moment I wake to the moment I sleep at night, all I worry about if trying to repair the damage my stupid doctor's office, Lexington Family Practice, if anyone's interested, did to my ability to be treated for Lyme this fall and get the bills paid for.

This is the second round of annoyance for the same reason, and I could not figure out what happened the first time... suddenly, as we progress into this do-over of the SAME PROBLEM, I begin to see the issue. I hate to lose a good PA because the back office is a mess, but I'm beginning to see no option.  Or I'll have to talk to the Better Business Bureau.  I'm not sure what else to do.

I went in to them, in late September, to get an appointment with a doctor in Virginia, who treats Lyme with IV, and, miraculously, is covered by my insurance. To get that appointment, and have Aetna pay for it, I needed to get a referral. I asked my doctor, who has no responsibility in my frustration, for said referral.  She wrote it down and when I called to confirm, the office said it was taken care of.  They had gotten me an appointment and everything. I got to Virginia, no worries, the doc there checked with the insurance before we proceeded, all went through fine, no concerns.

Until the bills started coming back saying I had no referral, so nothing was covered.

What they had done, although my doc wrote I needed a referral, was instead to refer me to a doc.  ie... get the appointment.  Which I did not need. So I'm trapped int he joy of semantics, although I technically asked for, and my doctor wrote, the correct semantic term. So my insurance says that the doc, and the month of IV in the PICC line are not covered because- no referral. I call my family prac's huge office to get them to resend the referral, which I've asked for and was taken care of.... right?  Nope.

 "I'm sorry" says main office, "We can't backdate referrals." 

"I don't need it back dated," I explain, "Just resend the one you sent before."

The phone rings a couple of days later.

"We're confirming the referral to Doctor Ramillo's office, in Virginia?"  the voice says.

"Yes?"  I say.

"Yes,"  they continue......"Your appointment is for next Monday...."

WHAT? 

So, bieng, obviously, idiots, they referred me AGAIN.  I had to explain this all to a fourth person.  To cancel the appointment.  Which I do not need.  And did not ask for.  Because I jsut needed a photocopy of the REFERRAL. 

"I'm sorry,"  they explain. "There is no referral on file."

I go into my SC doc, and she says "but it says right here, I asked for the referral. "

Yup.

So, tomorrow, I am going, with the baby (who hopefully will be whiny all day, as he is cutting four gigantic molars) to the main office. With my nook. And a packed lunch.  To sit until someone who is NOT an idiot can figure out what they are going to do, so that, because they did not do what they were supposed to do, I owe and additional four or five thousand dollars to various entities.

Oh, and then I'm coming home, and will start negotiations with my insurance (who has been rather patient, as, strangely enough, none of this seems to be their fault) about how the local hospital is charging us both ten thousand dollars for five hours of physical therapy lymphedema treatment, which consisted of daily wrapping up my legs with wraps, and did diddly amount of weight/change to my body. Of which, "my portion" is the remaining two thousand ish.  For five, one hour appointments.

Not even JEMSEK costs that much, and they didn't even do lymphatic tissue massage, or kenisiotape, or anything modern, just good old fashioned wrapping you up from head to toe and hope that helps.   And telling me to buy more expensive wraps on the last day.  At least Jemsek spends time with you and DOES something, even though he's not covered by insurance. And there's that tax fraud thing or something....

So, all the Medical Bill insanity, plus trying to file for the last thousand dollar refund on our FSA last year,  is inducing the insomnia causing me to be what my friend Heather O calls "drunk blogging," the late night version of drunk dialing, only, instead, on a blog.  And rambling. But I feel better.  SO much.  Hopefully you do too....just knowing you are not me tomorrow, stuck in a back office filled with people who have no idea what I'm talking about, with a tooth cutting crying two year old in tow.  Maybe that'll speed things up- I'll threaten to leave Senior Kicky Bitey Pant with them until his molars cut through.  That'll clear the "confusion" up in a hurry. 

So, see you on the other side.  Like I said, it doesn't take me too long. Just some chocolate, some buckling down into medical bills, and probably properly getting myself adrenaline filled with anger at someone or something long enough that I can fix these troubles.  Then I can collapse back into a pain filled heap later.

Callings and Yokes

I was really not looking forward to our Pack council meeting this afternoon.  I really don't loathe them... they're fun,  everybody brings snacks, and not one but 2 of my adored sisters are present (which is true even though one of them is 39.5 weeks pregnant and about to give birth to baby b at any moment). But, it's one more thing, right after church finishes, and the baby needs a nap (and the mama needs a nap) and the kids are hungry and... 

Well, during Primary time, I went to see A read a scripture out in front of the Primary (his turn) and stayed until they were released to classes.  A little boy who is usually rather shy came right up and gave me a massive squeezy hug!  I said hello to him (his name is Cameron, and he's an adorable tow-headed kid, usually quiet) and he ran off to class. I realized, if he had greeted me, as a mom of a friend, or a person in our church ward, he would have probably smiled and merely said hi. But I got a hug.  Because I'm one of the 2 Cubmasters....rather, because I'm one of HIS Cubmasters. 

Suddenly, going to pack committee meeting was a different than it had been. I realized that not only did I have a calling to serve boys who were depending on me (why does it feel sometimes, especially in pain, that everyone is depending on me?)  but I had a chance to be a good role model for these young boys, who in turn will grow up to be righteous men and priesthood leaders in their own homes. Hopefully they will be strong young men and adults, and will learn to respect not just their own parents, but the parents of their peers who are righteous, their good leaders, their faithful BSA leaders, joyful and enthusiastic teachers, and, someday in turn, their future wives.  The example I set today of a strong, hopefully somewhat funny and interesting, continually striving-to-be-righteous woman may not be an example they have in their homes, but they can have one anyway, because Sir and I have chosen to serve.  I don't have to be perfect, and I don't have to do this job perfectly... I just have to, as the cubs continually repeat, do MY best.

And that felt pretty weighty, but the good kind of weight, which is both heavy to bear, and light because the yoke is not yours, but Christ's. He has promised that, if we are willing to wear His yoke, our burdens will be lightened, that we may bear them.  I always think of a dutch milkmaid, when I hear that verse, with her using the tool of a one person yoke to bear the weight of the burden she must carry, the weight distributed across her back in order to make her burdens, though they may not actually be taken away, seem lighter.  The mass is the same... it is the weight of the burden that changes. Since, if it is His yoke, the weight is distributed more evenly, the burden easier to bear, the distance to setting down the burden shortened.... it turns out that the added responsibility becomes more of a joy than a burden.  Which is exactly what I need right now.

Now, if only I can only  feel that way about laundry and dishes....