Saturday, October 1, 2011

April and May: Pauli by Perludi

April and May: Pauli by Perludi: This design is so beautiful for a kids room. A chair that can become a bench and also a shelf, when putting two of them on each other... My children just walked into the room and immediately exclaimed- COOL, Those people must be really good at DIY. Can we have some? (Yes, I am a little bit in love with this kind of design... so clever, almost a visual physical pun...

Friday, September 30, 2011

Sun Scholars: Sharpie Tie-Dying

Sun Scholars: Sharpie Tie-Dying: We might go to the Dollar Tree for t shirts BEFORe Conference tomorrow and take care of business. This should entertain all three for at least a half hour or forty minutes....

Monday, September 26, 2011

Lyme Disease, neurological differences, and Death

Ok, I was reading the great Stark.raving.mad.mommy post on death and grief for children with aspberger's syndrome, which is what my kid's neurological issues mimics on the milder end of the spectrum, and I began to leave a long comment on how we have been functioning and explaining these things to our little ones. And then I thought, instead of posting to her site, on a really old post, perhaps I will pots my rambling commentary here.  It isn't funny....but serious is important sometimes, too.  

First of all, there were a couple of comments that discussed talking to children (especially Star wars loving boys) about death and comparing it to Star Wars Return of the Jedi.  I think that, for a kid, ANY kid, on any range of the spectrum or off of it, that that idea and coping mechanism or considering your loved one returning to the Force and that someday they can visit, all sparkly, and continue to offer you wisdom, is awesome. Really. I don't see that that conflicts in any way with the Truth of the Gospel of Jesus Christ.  I totally think that the concept of returning to The Force, though perhaps slightly different than the way we know things to be as adults, is a great one to understand for children. 

I'm Latter-day Saint, (ie, mainstream Mormon, lol) and our concept isn't the "same" as that, but similar. I have no doubt in my mind and heart that, for example, though I do not see my grandmother, that she continues to love and care for me in a very active way.  There are times that I feel very close to her, and it helps to continue to solidify that knowledge in my heart.  I do not doubt that I am watched over, not in a nebulous "we prolly have a guardian angel" kinda way, but in a very acute, very real, specific way- that my grandmother, my great grandmother, my brother in law who recently passed away, that they watch and protect us and continue to care for us after death.  I think many of us have had similar experiences, but we do not talk about some of them, being sacred and not to be shared in this kind of forum.  However, I think it is important to share that I know that my grandmother, Nomi, has a spirit life, and that she someday will get a new and renewed body, with no pain and sickness in it, and then I will be able to hug her again. And I can't wait for that day to happen... though I will happily wait for it.

I think it's very hard for children to think of death as a continuation, because we talk about the dead in the past tense, because we cannot talk to them in person, and because of our own unresolved grief.  I think that, for my family (high functioning in general, but with the addition of Lyme disease, which amplifies symptoms in the two effected children and my DH) one of the most helpful things has been to discuss our dead family members frankly and to remember them often, to speak of them as having had a body (past tense) but still having a spirit (presently, living and waiting for their resurrection) and then that they will eventually have a renewed body with no pain or sickness ever again (important... as my children are logical thinkers, if I say "will get their body back" they will think of zombies. Words can trip us up sometimes).  Also, it was a great help to us to post a copy of the grief cycle up so our older children could see it, and to talk about how mourning is a good, and natural process. It has nothing to do with how much faith you have, you are not broken for feeling sad, and it "will be ok" (-- that it's not ok NOW, but WILL be ok sometime, which every child, not just aspies, need to know... and I need to remember, too. I like that concept from the comments on SRMM's site... we will be using it in our family).  It's important to remember that it's also ok to feel our feelings now, and then we can process through the cycle.

After my brother in law died, at the age of 21, it was particularly hard for my daughter, who was five at the time.  She still has a picture of him on her bedside dresser, holding her as a baby, to remind her of him, and sometimes we still sit and feel sad about him together.  I feel that it's important for children to know it's ok to acknowledge their feelings.... like, it's ok to feel sad, though it might not be ok to hide in your room forever, crying;it's ok to be angry, but not ok to hit others when you're angry, etc.  When our beloved little friend, Ella, died in a dui accident in the spring, it brought a rush of new questions, a rush of new grief, and brought back the old grief as well. 

One thing that helped us and might help you, should you need it someday, is a common metaphor we use in our church for helping people, especially children, understand  life an death.  I hope a portion of it will be useful to you and anyone else who might read this someday.  

We will take out a glove, a driving glove or a winter glove. Then we show the child our moving hand, and explain that our hand in this story is like our spirit.  We have a spirit before we are born, and it looks like we do and it has the same likes and dislikes, because the spirit is US, just before we are conceived and born.  We call this our premortal existence, because, of course, it is before our life on Earth, our mortality.  We chose to come down to Earth to get our bodies, and to learn and grow so we can try to become more like our Heavenly Father. This is called mortality, because we are mortal, which means alive for a time here on Earth. 

At this point, the teacher will put on the glove, which represents our getting a body in our Earthly life. We continue to explain that sometimes after a long while, our bodies can get hurt in such a way that they can't heal, or we get very old and our bodies become sick because they are wearing out. Our bodies in mortality aren't meant to last forever. (For us, we had to include getting hurt in a way that cannot heal because of our young friends were killed in was specific to us, and perhaps would be much more comforting to a child whose grandparent had died to explain about being old and our bodies eventually wearing out...) 

Then, the teacher slips off the glove, and explains that when we are done with our earthly bodies, they die, but our spirit (like the hand inside the glove) continues to live and move, and still has a personality, and still thinks and feels... just as it did before we came to Earth in mortality-- but still having the knowledge, the likes and dislikes, and the memories of our time on Earth.  But, we explain, though our body is dead for a time, and is buried in the ground, and though (as my logical children of science obsession needed to remember) it might turn back into soil eventually, when Christ comes to the Earth again, everyone will be resurrected.  At this point we put back on the glove and explain that it will not be just our old body, with all the aches and pains, but it will be our old body renewed, and will look like us, only better and stronger, with no more pains.

Did this help?  Yes.  Did it make the pain go away?  Nope.  Should It No. Did it help with the continual questions?  Even Yesser. It helps to have answers, and to have prayed about them and to know that this explanation, of premortal existence, mortality, death and resurrection, is True... and it helped for them to know that their Dad and I could have great faith that these things are true, yet we mourn, also.  

The remaining sadness does show up at the strangest time, and we do still discuss our sadness often, even after five years.  But I think it really helps them to know that their uncle is still caring for them and continues to love them very much, and that when we talk about him, we use "Isaac is,"  and "Isaac really loves that kind of play,"  and "Isaac taught soccer, too, when he was a teenager," and all of the things that help our Isaac to remain a real person, not just in our past, but in our present and future. It helps that Ella's family wants to talk about Ella, doesn't repress that memory and pretend the child lost never existed.  We talk about Ella, because just as she was our friend, she is our friend. There's always this slight pause at events when our sweet friends whose daughter passed away bring up her name, or a child nearby does.  We all , as a community, have a pause in our thoughts, as if talking about the dead will cause grief to the living.  I am so grateful that my dear friend, D, and her family make a point to talk about our sweet Ella, because she is still a real person and still loves and lives... just not in mortality any longer.  We have to be less filled with Renaisance era concepts of Death, because they are false, and yet so ingrained in our culture here in the US, and in other countries as well, that we think more of Death as a Halloween creature in hood and bearing a sickle, not as an event that brings us to the next sage of existence.  When our little ones are bombarded continually with one image, that of the hooded spectre, and NOT reprogrammed to understand the truth, they are harmed spiritually, and much more prone to getting stuck someplace in the grief cycle instead of being able to healthily process our way through it.  And, as someone who greatly admires my friend D, and my MIL and FIL who comforted the mourners at their own son's funeral, not in that they were not sad and missing him, but in that they had received great peace as a spiritual gift given to them, I hope someday we can eradicate the false ideals and replace them with true knowledge that death is part of the journey, but not the final resting place.

My Mother in Law, who lost a son at his birth also, has an Angel tree each Christmas.  We carefully put an angel ornament on it for each child in the family. Not each living child... each child.  The family is only whole with everyone.  Talking about these uncles who are not living anymore helps the kids remember that their family loves them, ALL their family. It helps them to not keep the worldly concept of grief,  but to replace those impossibly untrue spectres of darkness with Truth and light.  

Grief is much harder to process for a person of logic, like my little ones (and spouse, and his siblings) because much of what we learn from seeing and reading in the world in general not only seems illogical, but FEELS illogical to our spirits.  By processing through the grief cycle and learning that sometimes we can get stuck in one of the stages, and that we can go backwards and forward until finally we get to a place we can accept the death... this is important.  We must be able to feel what we are feeling, and know although it isn't ok yet, it will be.  

We were made to mourn... perhaps it is our pressure valve. But these sweet ones who have communication difficulties, they have to be able to process in their own way, at their own time. They need to know that we ALL mourn, that there's no "appropriate" time to "get over it," or be done with mourning. They must be taught that mourning is not because of lack of understanding, or lack of faith.... but because we miss those we have lost, and we have a longing to be near them again, as we someday will be.

Much love, and stuff- Tamar

Wednesday, September 14, 2011

Empty and refilled

I accidentally on purpose left blogging in the spring after the death of a close friend's child. She has been killed by a drunk driver, and although the sweet family was very strong, and still is extremely strong,  the power of that one car struck not just the child and her father (who lives), but the lives of my children and nieces and nephews, who needed near constant care. My husband didn't realize he was freaked out, but he had to call every afternoon several times a day to make sure that all was well with me and the kids.... yeah, he was freaked a bit.  My daughter, Edie, and I had many MANY talks about heaven and her Heavenly Father, and how His love was encompassing, and where her little friend was, and ...and then there was our sweet son, Adam, who chose oblivion, but was relieved when his friends, the girl's brothers, returned to cub scouts.  So, I forgot to blog. Anything.  But now I'm going to try again, and we'll jsut see if I can get my lyme brian in order.  ALSO....TADA!  I'm going to talk about some of the craftiness involved in my life as I try to remake our house.  It's a little cluttered and overwhelming... as are our lives post Lyme.... so hopefully with the help of some lyrica and a lot of pain killers, little remodels often instead of big ones periodically will make some big differences. and I'm hoping to share! So... back to business, and no more procrastiblogging...

Thursday, May 12, 2011

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. 

Saturday, May 7, 2011

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. 

Thursday, April 21, 2011

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:


Wednesday, April 6, 2011

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. 

Tuesday, March 29, 2011

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.

Tuesday, March 22, 2011

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...."


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. "


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.

Sunday, March 13, 2011

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....

Saturday, March 12, 2011

Wednesday, March 9, 2011

Why can a single note from a teacher

send me hiding into my bedroom, certain I'm failing my children?  Educationally, at least.  There are so many other ways I'm heroic in parenting. For example, I got up this morning.

If you're not a Lyme patient, you might not understand how that is heroic.  Let me explain. Before I open my eyes, waking slowly, I perform a body assessment of what is going wrong. Stomachache? no.  Backache? Probably. Too bad to raise head? Hmm... probably extra pain medicine this AM. The litany continues to my feet, which finally hit the ground and then walk down the hall to wake E and A, who are aligning their own daily symptom list. Not being very self aware yet, being 8 and 9.75 yrs respectively, they tell me that today they feel way too horrible to go to school.... every day.  And they're probably right, except I intend them to get an education, so I make them get up, even though they are far too groggy to stand, make them dress, drag myself towards my pain medicine and downstiars, make breakfast, etc, etc. 

So, our first ten minutes of every day is spent evaluating- can I get up?  Can I will myself TO get up?  Yes, and I will get up.  But I don't "feel like it."  And that's the difference between being temporarily sick and being permanently sick- you don't feel like it, and you quite possibly never will feel like it, but you're going to do it anyway.  That applies to pretty much everything.... waking, lunch, diapering and washing children, laundry, making dinner, brushing your teeth, taking a shower, sex, going to sleep at night , leaving the house, fulfilling callings and getting up for church.  You do it Anyway, because otherwise nothing, ever, will actually get done. 

And when you're the Mama, and the world revolves only as fast as you push it, you have to get going and get things done.

Which brings us to the note about how frustrated A's teacher gets when he is out of class and makes up work slowly over time, along with keeping up with his regular homework. They want him in AEP (our version of "gifted and talented") next year; he qualifies. But, his trickle in work is a problem.  She is always having to take our her grading book, he's always getting things updated, it so frustrating for her. "He has the capability to do his work more quickly, and keep caught up." ie- not living up to expectations.

I was really proud of myself.  I absolutely did not say, "Poor You. How hard this must be for You."  I apologized, instead, and got my son to finish his makeup work for the three days he missed last week with a sinus infection.

Which, in the end,  is good, as the makeup work is MY fault.  It's all my fault.  He's eight, and he's got neurological "issues," meaning if I can ge tthis herd of cats to do anything it's amazing, and I'm usually focused on his sister, who is awesome, and scattered, like her Mama.  A's focus involves Legos and scouts, in that order, nothing else.  So, it's my business to drive him onward to finish.

But I'm driving myself onward to finish, to actually put in a load of dishes in the dishwasher, to actually pick up the floor in a room.  And my driving circuits are therefore overloaded.  Don't get me started about taking a wikiwalk through something entertaining to keep my mind off the pain and sick, and how long that can distract...or the novels, or the naps involved.

I feel overwhelmed, even though he's technically caught up.  Lots of those I know, facing this illness in their children, would go to the most logical conclusion for a reasonably adept or educated parent- to homeschool the immune disabled children instead, killing two birds (the immune kids's exposure, and the capability to progress at a different pace) with one stone. But as a mother focused on waking up in the morning, and dealaying said process as long as possible, my kids would not be homeschooled... they would be unschooled and uneducated, except by PBS and NPR. In the end, they might get an unconventional education, but while my pre-illness self was a chalk drawing, craft doing, music and singing, dancing, cutting out puppets with pinking shears kind of mom-to-be, my post LD self is more ...we'll say laid back, but really, sick, exhausted, and lazy is the truth.  My kids would have no learning, and again, I would be responsible.

Wherein does the solution lie?  Much prayer will be upon this in the next few weeks....

Tuesday, March 8, 2011

What's the Good Test, part 2

So, on to the "good test". There is a lab in California, Igenex, which specializes in Lyme disease western blots, shows ALL the bands on the DNA bloodwork so you can see them and your doc can make educated (hopefully, if he's what we call Lyme literate, and knows what he's doing) and also reads thousands of these things a year. They also do the co-infection panels, because the same tick that gives a person Lyme can give them, at the same time, up to seven other infections. I have two, but I had originally three, including a mycoplasma in my system that my docs found two years before they found the Lyme. should have been a big tip off, but wasn't... too several more years of my won research to find the real cause.

All of that said... I was CDC negative, Igenex positive, and we only figured that part out because my doc's office called and said my test came back negative (pre-Lyme literate doctor) and when I, in tears, told Noah he said "No. The spirit witnessed to us that this was the answer. I want to see it for myself." He got them to fax over the results, and right under CDC negative (duh) it said "positive." He called me and we both sorrowed and rejoiced... it is so nice to know the name of the monster you are fighting, even if it is a mythological beast come real. The trouble with treating Lyme for a couple of months, with a single antibiotic, is that it can happily encase itself in a hard shell, hide until the antibiotics are gone, and then resurface to wreak more havoc. It can change its protein form from standard to spirocete. Cousin to it's evil friend, syphilis. Lyme is a beast.... but it is a beast that, if not kill completely, you can at least place in chains in the basement. It tries to escape periodically, and you beat it back, but it doesn't have to kill you....not if you care for it.

It has to get diagnosed, though, because without treatment, the effects are astonishing. Besides infertility, if it doesn't kill of the egg in your womb, it can pass through the placenta an happily infect your unborn child- I have two of mine who are Lyme positive, the third as yet untested, but with no symptoms (knock wood.) It can cause memory loss, palsy, and dementia rivaling Alzheimer's if left untreated. It can kill, but just like early AIDS patients (whose fight for recognition eerily mirrors that fight we face for Lyme recognition and treatment) sufferers are written down as death from pneumonia, or flu, or other things that get in and butcher when the immune system is overloaded or down. Unlike AIDS, though, antibiotics beat back the problem, though there is much discussion over whether it kills it off completely. I have an aunt who was treated quickly after a tick bite with full scale doxycycline in Iv form, the best treatment for Lyme, which is epidemic in her state, Virginia. She was pronounced clean two years ago, but since has been "reinfected" twice. All her symptoms return, and her immunologist says she must have been bitten by a tick again, as her rash comes back. Other Lyme docs say you can beat it back, but it doesn't take another tick bite to reinfect... it can go into remission and then return any time from a year to thirty years later, the key being to see when the trouble returns and treat again.
Lyme also causes all the the symptoms on the checklist I forwarded, and more. And doctors are missing it everywhere, because they still believe "that's not a problem here. Only those up North get that." Similarly to how AIDS patients in the nineties heard that "that's not a problem here. Only NY and LA." Unfortunately, bacteria and viruses care little for boundaries, between states, between countries, between people. Oh, and Lyme too, can be sexually transmitted.

But the Igenex test isn't covered, usually, by insurance. It's about 380 dollars. It's nasty expensive. But.... if you pray over it and feel like this is the answer for you to do, it is worth every penny to be able to go into a doctor and say "look at this. Now, send me to a specialist, and let's take care of this problem."

hopefully all that was not terribly rambley....I adore you, and I'm so sorry that you even have to suspect this sort of garbage. I want you to be prepared to know the trouble with getting a regular test. If a doc tells you "no big deal, we order the ELISA, it's negative, nope, not getting another test, you don't need one," you have to be educated in all this garbage so you can say "no, I want the other one anyway, humor me." It's so hard to find doctors to feel safe with, who pay attention to you, and it's so hard to get unprogrammed from the -deity complex we have regarding doctors. They are BRILLIANT, and have studied long.... but just as sometimes "when they are learned they think they are wise, and hearken not to the counsel of God, for they set it aside, believing they know of themselves, therefore their wisdom is foolishness and profiteth them nothing," we must be learned in both research and the spirit to know what guidance our family, our lives, our health needs. I hope I'm about the help at all with that, whether this beast is what you are fighting, or it is another.

love you- Tamar

"What's The Good Test," part 1

Symptom Checklist:   

yeah, it's all sounding familiar, right?

Well, there's a huge controversy around Lyme disease... like celiac, it can be over diagnosed, but, like celiac, it can be woefully underdiagnosed, you know? I know you know all about the GF stuff, the controversy, people saying "well, you're probably not _really_ having this issue, etc, when the GOOD test shows you are, not just the "stop eating it and see if it gets better" bit.

Ah, already, you are having the "loooovely" "good doctor/bad doctor" bit. I LOVE the ones who pat you on the head and tell you to just go take a nap, or lose weight, or whatever. So encouraging.

I know, the questions are huge after reading some of the stuff. I hope I can help answer them, lol. Most of the info I love is from Dr Burascano's position paper. If you google that and read it, you will have jsut about everything I know, lol. And, it's a great paper, so there's that. However, If you've having memory problems, then you might want to hand it over to your sweetie and let him read it, too, and discuss it.

The good test for Lyme is Not the standardized western blot, which is what most docs think it is. The ELISA, which is the first test the usually run, is vastly inaccurate after about six months of illness... I'm figuring you've gotten to that point, as desperation somewhat has set in, (not that you've lost hope, you've just been facing this long enough to feel the ARGH!). Meanwhile, the standard western blot, ie the CDC positive they want you to have, becomes elusive at about six months as well. If not impossible to begin with. The breakdown is this: about 25 years ago, there was a possibility of a vaccine against Lyme disease, and everybody got very excited. At that point, Lyme wasn't as badly widespread as it is now, and they thought it was isolated to the NE sector of the US... which it wasn't (dang ticks and deer they feed off of. They just don't pay attention to those big red boundary lines on maps. So stupid, won't stay put in Connecticut...I got infected in upstate SC, at girl's camp, about 22 years ago. so yeah.) In order to do the CDC trials for the vaccine, they needed clear-cut standards for testing. Lyme does not like clear-cut standards, and is not conducive to little happy boxes to tape it in. However, they didn't know that so much then (they being modern medicine, I guess, which is only just catching on to this problem Now....) and decided that since lots of people with Lyme tested positive with five bands infected on the DNA western blot test, they would make it, for the sake of testing a recommendation that that be a way to diagnose Lyme, so that a)people would know if the vaccine was working int he trials, and b)doctors would have it easier. However, they warned in the recommendations (notice- NOT diagnosis guidelines. ONLY recommendations.) that this Not be used to exclude diagnosis for persons who have symptoms, as Lyme is nebulous, etc. They warned to diagnose symptomatically.

The vaccine was a bust, but the recommendations were still on the books. in fact, the vaccine was shown to make it easier to get Lyme, possibly even creating the disease in the test subjects. But it was too late for the medical community... the chance of an easy diagnosis and clear standards were too pleasing.

Unfortunately, as soon as they stuck recommendations down that to have Lyme disease you needed to have a bulls eye rash (now found, less that 50% of patients have, or found, or saw the bulls eye rash), and you have the clear onset of symptoms (nope, not really, and some get them gradually, or get only some symptoms, or just weird ones. Which is why the commercials that say "depression hurts, "peeve me... I worry about all those people who think oh, I'm depressed and hurting, so I take a depression medicine that will make it better,' and then never find the reason behind the hurt...) AND most crucially, who have FIVE bands on the Western Blot, and if they have those five bands are CDC positive, and then can get treatment. Anyone else, no treatment ("you don't have this, no CDC positive.")

In the past 25 years, however, hat has been figured out thus far, boiled down, is this: you don't have to have five bands. It matters WHICH bands are positive. Most tests only show "positive" or "negative," but don't show the doctors which bands. Many labs never run more than a few Western Blots a year, and they can be harder to read, as well. Not only that, but some studies show that while many MEN who have Lyme disease, or those tested in the first six months to a year, have the necessary five bands, most women and children have only four bands positive, or even three, and therefore, after that six month window of illness (and, if it comes on gradually, that's hard to fit into) the western blot, CDC style, gets really inaccurate... about sixty percent accurate according to some studies done by Lyme disease organizations. Worse, in the past three years a little study came out form the IDSA which said "there's no such thing as chronic Lyme disease, nobody needs to be treated for long periods, three weeks to six weeks of antibiotics, amoxicillin, should do the trick." OH, my goodness... this was a MASSIVE scandal... all the people who suffer from chronic Lyme disease found themselves cut off from treatment, many doctors who treat Lyme exclusively, whether charlatans or not (and there are jokers, but a lot of good immunologists, too) were cut off from treating patients or lost ability to bill insurance, and hilarity ensued. This part happened about four years ago (about a year into my treatment, of course) and since then, the IDSA panel who made this "further recommendation" was shown to have massive problems- ten of the twelve researchers were actively researching FOR insurance companies, had taken bribes, etc. It was bad. But the problem stands, because as long as insurance doesn't want to pay for extended treatment, it doesn't have to... sort of. There are some ways around it, but it's expensive and really annoying.

To be cont...: 

So, what's the deal with this Lyme thing anyway....

A friend of mine is having nebulously ill symptoms, and her doctors cannot find a thing wrong with her. She is truly having the symptoms, though, although tests have shown nothing thus far.  She's having everything weird going on, from strange aches and pains and extreme fatigue, to insomnia, to this weird rash her doc thinks is ringworm and keeps treating, but it only returns a while later.  She feels like she has a sinus infection all the time, and has what we Southerners delicately call "intestinal troubles," and her doctor is testing her for chron's and Rheumatoid Arthritis, and Fibromyalgia, and Chronic Fatigue Syndrome (as much as there are tests for those things, which basically mean "I have to acknowledge that you really do hurt and feel nasty, even though I cannot find a thing wrong, I believe you are not lying."). She is getting frustrated. Doctors are telling her that if's she's tired, take a nap, if she's gaining weight, diet more, to severely restrict her diet, to go gluten free, to just Get Over It.  No, they don't know why her period's all wonky and she's getting migraines all the time.

In other words,
                        everything on my personal symptom list.

I didn't know all of this last week.  She just posted on FB about how frustrated she was about not being able to find anything wrong, and I mentioned that if she got annoyed and needed to vent about always being sick,. without having anyone judge her or tell her to "buck It Up Little Camper," then she could email and complain to me. I would understand that she had not lost her faith, or her will to live, and I would understand that she just wanted to know WHAT the trouble was so she could do SOMETHING about it.  I figured, it's important for all of sickies to stick together.  It's hard to need to tell Someone that you hurt more today than yesterday, and yet not make it sounds like "whine whine whiny whine whine."  After a while, your spouse really does Not need to hear that, especially when you realize that the sickness is not going anywhere, and, therefore, you cannot make noises every time you hurt for the rest of your life, or else nobody will ever want to be near you again.  (PS great book: Chronic Pain and the Family.. More linkies later)

So, she emailed me her note, which sounds so very much like she was stalking me before I was treated. When she wrote about the "we don't know what it is" rash, my personal alarm bells started buzzing like crazy.  I sent her "the link." The one I share with all nebulously sick folks.  The one that I read and KNEW, at a cellular level, that _this_ was what I was searching to find.  Knew in my bones and spirit that, this illness, in one sickness described all of my ailments.  Gave me the first original thought in years: could it be that, instead of six thousands things being wrong with me, everything, every symptom for a decade fell under one illness.  Well, one illness and co-infections.

So I mailed her the list, link in the sidebar (if I can figure it out) under symptom list, and waited. She immediately wrote back that she felt chills upon reading it, and please tell her more and how to get "the good test."

After writing her back a lengthy letter, I've decided to share it with you, in two parts. It is long.  Hopefully it encapsulates portions of the Lyme controversy, the reasons for reading the symptom list, even if you don't have illness, in order to help safeguard those you love.  Hopefully, if someone you know falls under this vast umbrella, you can pass the list onward to them.  Hopefully, if they read it and feel that bone shaking knowledge fill their heart, they too will feel inspired to find a literate doctor and get "the good test."  Of my eleven (thus far) friends with nebulous and hard to diagnose neuromuscular symptoms, seven (SEVEN!) tested Ignex positive for Lyme, got treated in some form, whether using the antibiotic route or herbal route, and are doing on average much better than they were.  One, this sweet S who received my letter today,  hopefully will be tested soon. 

May you and all of your loved ones be safe from this dragon, Lyme, but if you have no diagnosis are are losing both your mind, your body, and your hope, perhaps knowing more of this information in an easier to read format will help restore those things.  Of the three, the most essential is hope, but getting the other two back is nice too. 

Much love- Tamar

Monday, February 21, 2011

Potty Training a Child Without Lyme...

Is So Different Than training one with Lyme disease. My two older children, E and A, both have Lyme (infected in the womb), although we didn't know what was wrong until A was two and E was four.  The monthly fevers, the crying, the random rashes that doctor's scratched their heads over and said "weren't contagious, probably not a big deal," (but they were), the throwing up, the fatigue and meltdowns... the amplification of every regular thing that two and three year olds do... that is wearing enough on a family.  Add not being able to figure out WHY the 103 degree fevers happen once a month --I used to time them.  We had a big calender, and I could accurately predict within two days when A would start having night terrors and bed wetting and screaming spells, followed by sunken looking eyes and the big fever for a couple of days. Our docs? Still baffled, until WE told them what was wrong...after my diagnosis. All incredibly demoralizing to a new mom.

But it was also strangley demoralizing as a mother to have a three and a half year old who was not potty trained.  We knew they were smart. We knew they were capable. We knew they were sick, too, although we didn't know why yet, when E was that age. Sir was working from hom then, so we had not one but two adults (one able bodied, one, meh.) working on this project. But, although both children, in their own times, trained beautifully for two weeks out of the month, then they would start in with accidents and continue into the fevers, with everything falling apart. Every month... two weeks of training, one week of nastysick, one week of recovery/starting over, lather/rinse/repeat. Nevermind my own sickness- who cares about training when you're too sick to be awake? Let's watch Dora in the recliner while Mama nurses the baby and sleeps, k?

And so... both of my older children trained shortly AFTER they each turned four, when they finally could manage to stay dry all day (mostly) and through the night. SO, when my second child, A, started training at 2, my first child, E, was still in diapers, at 3.7. They still had accidents until they were sevenish, but mostly finished training at four.  Two long years, each, overlapping with both training during one of the years. Yowsa.

I felt like a failure as a mother... why could I not get these children potty trained?  But at the same time, I felt restrained from doing anything drastic about it, no major missions or yelling at the little ones.  It was jsut as frustrating for them as it was for me.... well, almost. I could see how hard they worked at this goal, how much they wanted to be able to do it... and how frustrated they were at being unable to continue when the sickness began.  They wanted the joy of being trained almost as much as we did.

Pause four years, and then enters little mr. e- or, Captain America, as we call him.  Third child.  Post Lyme treatment for me.  And, so far, he's symptom free, and just turned two. 

Potty training this one?  Piece. Of. Cake.  He won't wear a diaper and wants to be naked, but he also rarely has accidents.  He happily uses the little or big potties interchangeably and tells me when he needs to go. He refuses diapers because he really wants to learn. Is he just a merry little soul? 

The lack of Lyme, to me, is a huge difference...  there is continuity, no stopping and starting, no giving up as he lies limply in my arms burning with fever.  You can't forcibly train a small one as they lie limply in your arms burning at 104 degrees...even if that is regeur for your family.  This time, I'm not doing anything differently... except maybe not trying to start him training before the age of 2, which is making a difference as well.

So, what's the big deal?  Why am I telling you this, all about the differences in toilet teaching a two year old without Lyme?  Someone needs to know it. I wish I had known it. 

If you're training one with Lyme this time, it's going to be different than if you've trained without.  I was so blessed to have sisters and mothers who didn't push us, who knew something was different with our children, no matter how smart and wonderful they were, that it didn't matter if they just weren't trained yet.  The only emotional beating I got was from myself, not outsiders looking down at me, asking why MY kids weren't trained when their 18month olds were.  Even if I thought they might be. 

I want you to know, if you are facing this trouble, if you have a child of any "difference,"  if it is Lyme, if it is ADHD, if it is any sickness from Babesia to wherever, that it's going to be ok.  If it is possible, it will happen, eventually. If your child is so ill that it is not possible, and it doesn't happen, and they have diapers forever...well, we do what we have to do.  But, it is no reflection on your parenting if your child is one of the thousands who look "average,"  seem "normal," and have outward appearances of every other child their age, and still has accidents or need nighttime care, or who is embarassed for their bladder still trying to catch up with the growth of their bodies.  It just doesn't matter. There are far more important things to focus on in life.

I did have one distant great uncle who, seeing that my E at six was still having periodic accidents, recommended that we treat her like he treated his oldest son, who, when he had an accident, would be shamed for it, then squirted off in the yard, naked, with a garden hose. I was horrified and embarassed... not for my daughter, but for his then grown son.  It amazed me that uncle could, in one breath, recommend childrearing practices to me, and in the next breath, say that his same son was doing much better in rehab (really), his plugged and tatted and heroined self luckily recouping.  I wonder, in the end, if those two stories were related, after all?

My two older bairns are bright, happy, smart, healthy as possible (when possible) and diaper free (at eight and ten, thankfully), and no longer randomly pull their pants down in the back yard while screaming "I have to PEEEEEEEE!"  (yes, startling the neighbors). 

But, wow. It is so different to be training a (hopefully) Lyme-free child. 

Kinda freaks me out, though. I told Sir that I'd consider thinking about maybe sometime us having one more child, but only once little e was both weaned and potty trained, because if I'm going to spend another year in a wheelchair puking like I did during the last pregnancy, I'm not going try to potty train a child at the same time.

Do you think e heard me?  And wants a mini-sib? And do I have to actually consider it once he is trained?  (ack?!  Maybe?)

Friday, February 4, 2011

Body Issues

I have so many, from my well meaning (and really generally wonderful) Dad mentioning stretch lines on my legs one summer in high school (I was 137lbs and 5'8", btw, and though we didn't know it, was developing lymphedema) to kids in middle school calling me thunder thighs (evil children. Can't we just skip middle school, it's when so much of the damage to our psyches happens and it takes up until our thirties and beyond to recover from the idiot comments made during that fragile time.) 

If you don't know much about lymphedema, your body doesn't properly move around the lymphatic fluid in your system, and you retain a LOT of water. Like, a LOT lot.  When we first started the treatments (which include binding the legs up in bandages firmly to make them work better) we got over three liters of fluid out of my CALVES. SO you can imagine the rest of me... I still am the same height as high school, but now weigh close to three- 3!!!-- hundred pounds.  I hate it, and there is no magic pill to use, no exercise I can do to diminish it, no diet that will work.  I just get to be bound with bandages like a mummy. Thankfully, I've graduated to expensive spandex bodysuits under my clothes now. We call them my supersuits. They make it so I can walk. 

But the point is this:

It still makes me uncomfortable that my husband thinks I am gorgeous.  Drop down, flat out gorgeous.  This is NOT a problem, right?  To be sexy to my husband of fourteen years, who is bluntly honest in everything else he says, and basically is hardwired to find it impossible to lie (think extremely mild aspberger's) and yet every time he caresses me and tells me how incredibly hot I am, I have a little voice in the back of my head that says I am hideous and disgusting and how in the world could he think that I am beautiful?  I see myself in the mirror, and remember how I thought myself fat when I weighted less than 150lbs, and realize that I will not in this life ever see that side of 200 again... and I just have SO much trouble believing him that I could possibly be desireable.  But it must be true to him.  He really does love and find me extremely sexy, and I doubt it's because he has some perversion.  He loved me little when we married, he's loved me while sick and sicker, and he still loves me, though he doesn't like a lot of things about how I can move, my pain level, etc.  yet he thinks I am beautiful.

And yet I cannot psychologically believe him.  

And that's my problem, not his.

Tuesday, January 25, 2011

I've been thinking a lot lately about what it means to be Bound to the Lord... mostly because I do a lot of binding myself in order to function.  No, there's no sdbm in this house... I just have lymphedema, and that means a lot of binding and unbinding. The flow of lymphatic fluid in my body... well, like almost everything else in my system, it doesn't work correctly, which means less immune system function, more pain, and a lot of uncomfortable heaviness in arms and legs. I hadn't prorgessed to the point of weeping sores or my legs beginning to die when we found this problem, but we didn't figure this out until a few months ago, although the issue has been around for years, (probably since college, when I started gaining weight and couldn't do anything about it).  An interesting function of lympedema--you cannot lose weight no matter how hard you try, because msot of the weight isn't _weight_, it's lymphatic fluid pooling in your body. You can exercise, and you can be healthier, but your shape and weight will probably not change, unless you are continually bound, and then, not very much. Gross, and very frustrating, but scientifically fascinating.

The treatment is to be bound-- gently at first, and then more firmly-- with layers of fabric and bandages, to force the fluid to go back where it is supposed to be.  A semi- stretchy mummification process.  At the clinic where I was taught to wrap my legs, they explained that this problem does not go away after treatment... I will deal with it for my whole life, and I will need some sort of binding and compression daily to be able to function.  This was a new kind of grief cycle for me to being to process....summertime shorts WITH extreme support hose underneath, no dresses without tight bandages. One of those times you really figure out how vain you still are, despite all. I had thought that most of my vanity, weighing a hundred pounds+ more than I was in college, having a limp, having neuropathy variations in my brain for memory and mood, having Lyme in general, was burned out of me, as it should be.  But....

I dreaded being bound up, being tied up in all those bandages. But, as all other things with these sickness, the desperation of the pain and aches and heaviness drove me towards the hope that maybe, just maybe, it could get a little bit better. I bought my super-suit-- a compression tank plus a spanx-like short, variations of the ancient corsets women abandoned after the 1950's-- and began wearing it daily. I began learning how to wrap my calves and thighs in layer upon layer of hot, tight bandages.  And you know what? 

It was wonderful.

Not the time it took to do, or to unwind to shower. Not the thought of having to do that daily for-ever.... but, instead, the binding itself. 

Imagine for a moment, that under your clothing you are wrapped from hip to toe in ace bandages.  Not too tightly. Firmly. They begin gently in the therapy, so you can get accustomed to being bound bit by bit. Under that, you have a layer of polyester batting, like quilters use for blankets, under that layer a cloth layer wicking moisture away from the fragile skin itself.  For someone who gets as claustrophobic as I do, the visualization of this process reminded me more of ancient Egypt than of healing.

And yet...

And yet, it was wonderful.  It was like a firm, gentle hug.  Itching was a bit inconvenient (thank goodness I bought the lymphodema ready-wraps, which are SO much faster and easier than wrapping and unwrapping) but not too distracting.  The most interesting part, though, was how I FELT.  My legs, my hips, my back, even my arms which were still unbound, no longer fetl as heavy and unusable. I could move, and though it was not pain _free_, it was with considerably less pain than before.  I could do exciting new things, like clean more of my house, and better care for my children. Walk upstairs.  Despite the embarassment of seemingly gigantic leg bandages (I've still not bought the two or three hundred dollars worth of super strong 20-30 support pantyhose I need to get...budget budget budget...) I remain bound at church and home and stores and have adapted my wardrobe as best as I can. If I leave myself unbound for a morning, or afternoon, the pain once again increases, and my functonality disappears...

So here's what I have been thinking this last month of being bound. 

Continually, the concept of covenants and being bound to the Lord come into my mind, and I think of that same process we go through when investigating or just beginning to understand the truth of the Gospel of Jesus Christ.  First, we contemplate all of the seeming restrictions... no alcohol? No cofee and tea?  No wanton sex ... well, that one isn't difficult for me, but I could see how it would be for some people more accustomed to living in the world and by the world's standards.  We go to church in a three hour block on Sunday morning?  And accept callings to help out others?  We pay a tithe of ten percent of our increase in earnings?  (that's a stumbler for some people... they have not yet learned about God's math.) All of these bandages, though designed by the Creator for healing and comfort, seem confining and more like tethers.

And then, we put them on....

And living the Truth is different than the world's perception of living the truth.  The benefits, the peace and comfort, more than outweigh the vanity option, or our previous idea of convenience.  Before much time passes, we realize it is comfortable to be bound to the Lord.  Before much longer, we realize that we desire to be more firmly bound to Him, to His precepts and truths.  From the outside, someone might think "wow, how pitiful that they have to be bound like that....I'm glad I don't have to be bound," but all the while may be suffering the same pains, the same illness, the same limitations and not know the peace and warmth and comfort being bound can mean. 

Like my outward bandages, my inward binding is a choice.. I can choose daily if I desire to be bound or cast aside my neopreme and velcro concoctions and walk away, seemingly free.  But before many hours pass away, I will be limping, dragging, crawling upstairs to rebind myself, the damage having to be undone, the pain not subsiding immediately but over a period of hours (or days) from my own neglect and refusal to obediently be bound.

How many of us do the same with the bindings of the Lord? How many of us daily seek to be less bound, but hope to continue to have the same blessings of being bound more tightly, without the inward trappings and outward trappings that signify that covenential binding?

This is what I've been considering these past few weeks, and I hope it is of blessing to you.  May your binding be ever more increasing, that you may heal inwardly as well as outwardly in this continued journey.

Tuesday, January 4, 2011

Fresh Courage Take

So for 2011 I'm going to start doing what everybody keeps telling me to do, and begin to blog.  I'd like to think that I am told to blog because I am funny, or smart, or have something interesting to talk about, but probably it is more that I have, since birth, been full of words, all crowding to get free.  I am, however, sometimes quite ill and also my jewels are also quite ill, which means my capabilities will be at best sporadic, hopefully vaguely intelligent on good brain days, and typed with a preschooler on my lap.  I could use that last mention as the excuse for my poorly typed words, but realistically, it's because my fingers do not type words that I've known how to spell since fifth grade in the correct order, and periodically I miss one when I check.  Which would be slightly less embarassing if I didn't have editorial experience.

If you wanted pictures, this is probably not where you want to be.  If want a beautiful story about how to DIY crafts, illustrated with professionally done pictures, (I do too, truly), this is not your blog.  If you have, however, Lyme disease and/or have a family member with Lyme disease, perhaps I can be of some use to you.

Word have always been my chosen medium.  Since I could hold a pencil I have needed to write, and therefore, the progression of this disgusting bacteria throughout my system, creating complications in the neural pathways which create strings of words and communication capabilities is particularly both ironic and frustrating.  But, having a portion of my brain returned to me by a recently completed round of IV antibiotics,  and having five years experience in the ringamarole of Lyme treatment options, as well as 22 years of experience with the detriments caused by this disease, diagnosed or undiagnosed, I feel it is time to begin to contribute what hope and opportunity I have to the discussion of this disease.

I am a 35 year old wife and mother of three small children, two of whom have tested positive for Lyme, having been infected inutero.  I am Latter-day Saint, and have great faith and hope in Christ.  Hope is what drives me forward daily, a continual refusal to collapse under the weight and strain of the pressure from both within and without my body.  My name is Tamar, and I hope that something I have experienced can be of use to you. 

The name of my blog is an ongoing inside joke... You know that when life gives you lemons, you make lemonade.  Everything we do in our household, who we have become, is what happens when life gives you Lyme disease.  Thus, I hope that my small contribution can offer some aid to whatever sorrows and illnesses are plaguing you and your family.  I do not have much, and some days am nearing empty, but in my hermitage I will give all that I can.

I contribute as a former editor and current board member at, which, if your hope meter is running low, you should definitely check out.  It is a LDS women's literary magazine begun six years ago, and is of both the highest quality authorship and doctrine, and I love it dearly.  One of my greatest sorrows has been becoming too sick to be able to further serve as editor, but, with Lyme, you take what you can and return whatever is possible.  Just being able to associate with the women who write, blog, and editor there is a gift to my life.

And now... to change a sick baby....