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....

My Week, as brought to you by Advil and Mucinex

MIGRAINE!!!!! 

Ah, spring....

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....

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