Wednesday, March 18, 2015

I found the beautiful Agnus Dei which is sung in our parish during Lent.  From Hans Leo Hassler's Missa Secunda, it is a lovely, introspective few moments of prayer.  I wish we used it all year...but I suppose that would take some small bit away from the joy of hearing it for such a short time.

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I was chatting with a friend late last week and told her that I was preparing my meds for the coming weeks.  It occurred to me that she had no concept of what that entailed--in fact, for most people, "bead counting" bears no meaning whatsoever, unless one imagines jewelry or Rosary making or something along those lines.  But that's what I'm doing.  I took pictures to text to her.  She was absolutely dumbstruck at how involved it is.

I've been taking Cymbalta.  It's an antidepressant which is also sometimes prescribed for the pain that comes with fibromyalgia.  After being on it for 6 months, I had begun really not liking the side effects, and made the choice to go a different way to work on the pain I experience.

The problem with that choice is that Cymbalta is darned near impossible to stop taking.

You can't just stop.  You can't even just taper down by reducing the dose.  Lots of doctors think the way to help their patients stop taking Cymbalta is to tell them to take it every other day for a couple of weeks, and then go down a step, and take it every other day for a couple of more weeks, and then just stop.

Cymbalta has a half life of 12 hours.  And the cold turkey withdrawal effects are absolutely horrific.

Nope.  That's not an exaggeration.  It's truly horrific.

I started out on 30 mg each day, and within 2 months, I was taking 60 mg each day.  That seems to be about average for timeline and dosage.  And like I said, I was on it for six months.  I had no idea what the withdrawal would be like--but when I ran out of my prescription, I thought, "I don't need to pick up the refill.  I'm not really in need of this stuff anymore."

That lasted for four days.

By the end of four days, I thought I was going crazy from the outside in and back out again.  I was nauseous, dizzy, my brain was in some sort of fog that felt like I was trying to think through unspun wool.  And the worst parts: even just sitting, doing nothing, was excruciatingly painful, in addition to having "brain zaps" on a frequent basis.  I wanted to crawl out of my skin.  I couldn't breathe.  I was absolutely terrified.  The nightmares were so real I was waking up drenched in sweat--and that was on the nights I could sleep.  The headaches were blinding.  My Darling ended up racing to the pharmacy and telling me: "We need to find another way to get you off of this stuff."

Cold turkey is not the way to get off of this poison.  And the trouble with the way many doctors tell their patients to taper down is that it throws them into that same pattern of cold turkey withdrawal every other day.  That's a real problem.  And yet, the doctors do not seem to know the havoc which is wreaked on the minds and bodies of their patients by this awful medication.

But the maker of the drug....they knew.  They knew and they did not share that information, and there are ongoing lawsuits addressing this issue.

The only safe way to get off of Cymbalta--or it's generic form, duloxetine--is what I mentioned above: the bead counting method.

When My Darling retrieved my prescription, we found out that there had been something of a miscommunication.  I was out of 60 mg refills, but I had remaining 30 mg refills.  The pharmacist said I could get the next refill after 15 days rather than the 30 days it was "supposed" to be for.

Pharmacists.  They get it.  People forget how knowledgeable pharmacists are.

I had already done a bit of searching--mostly at that point, I wanted confirmation that I wasn't going crazy--I wanted to know that I was not alone in what I was feeling because of the withdrawal effects.

Oh boy, was I not alone.

If you go to your favorite interweb search engine and type in "Cymbalta withdrawal side effects," you'll get a real quick education.  And it's not a pretty one.

I spoke with the PA I've been blessed to see and he was fully supportive of my need to get off of this drug.  The doctor I've been assigned...not so much.  More on that later though.

So the bead counting.....here's the scoop.  Inside each capsule are tiny little beads.  There are either hundreds that are the size of nonpareils (those tiny little multi-colored bead-like cookie sprinkles) or several that are the size of dragees (the bigger silver or gold bead-like cookie decorations).  If they're the larger sort of beads, then the unfortunate individual needing to taper down has to contact a compounding pharmacy in order to do so safely.

But the tiny ones?  Those are relatively "easy" as it goes.  In my generic 30 mg capsules, there are 250 beads.  Two hundred fifty.  I know this because I removed six random capsules and counted. every. single. bead. in each one.  And being on 60 mg each day, that meant I was taking 500 beads per dose.  After doing some extensive reading (like, solid hours of reading each day over several days), I concluded that based on my dose and the length of time I'd been taking it, I was probably safe doing a relatively aggressive taper.  I decided I could safely remove 11 beads the first day, 22 beads the second day, 33 beads the third day, 44 beads the fourth day, and so on, increasing the amount removed by an additional 11 beads each day.  All of my reading told me that if I began to feel the negative effects of withdrawal, I could absolutely hold steady where I was until those effects faded, how ever long that might take.  The normal effects?  The ones that you just have to learn to cope with?  Intense muscle and joint aches.  Insomnia.  Vivid, strange dreams.  Equally vivid nightmares.  Headaches.  Mild brain zaps.  Mental fog.  Increased anxiety.  Panic attacks.  Those things are my constant companions.

It took me about 5 weeks to get down to one capsule.  I spent a few hours one night removing the beads from each capsule until I got more than half way through, then began removing all of the beads and counting out what to put back into the capsules.  And I saved the beads I removed in a plastic baggie.  It actually went pretty smoothly.  The insomnia is killer, but my anxiety has been minimal.  The aches....I really thought I would get used to them, but they're really bad some nights.  Doesn't make the insomnia any easier. 

In that second capsule, the day I got down to 117 beads left in the capsule, I started having some pretty bad withdrawal again.  It coincided with my needing to be on antibiotics.  Apparently the way antibiotics affect gut health also affects the way the body is able (or less able) to metabolize a chemical like Cymbalta.  I ended up having to hold steady at 117 beads for an additional ten days.

Last week, I was able to resume counting down.  On one of the many nights I couldn't sleep, I finished up.  I had pretty solid advice from my pharmacist (who also graciously supplied me with empty capsules so I could use up my saved beads, rather than filling another prescription) that I should be extra careful toward the end.

Here's what my night's process looked like.  First, I got everything I needed on my wooden lap desk.
I have my baggie of empty capsules, my multi-dose pill organizer, tweezers, two little glass dishes, paper and pen, and the all important beads of poison.

I start out by counting out ten beads into the glass dish.  This is what ten beads looks like, with the tip of my ballpoint pen next to them for reference.


 I count out loud--sort of.  I listen to music in my earphones while I count so that I don't get distracted by outside noises.  Then I make a mark on my piece of paper so that I know I've counted out ten.
This is the same piece of paper I used when I was counting out the 117 beads I was taking while on antibiotics.  This time I was doing several days in a row: you can see the numerical progression.  My first mark for the evening is beneath 106.

This is what 50 beads looks like:

 It really doesn't look as sinister as it is.  Evil hides in small places sometimes, I guess.

Here's the whole 106:
Truly amazing.

Even more amazing to me is the amount left in the little dish after I had counted out enough for THREE WEEKS:
I am so, so grateful that those things are not in my body.

And this is what the dish along with the remaining beads in the baggie look like:


And my little scrap of paper...I really slowed the taper down at the end, removing four, three or two some days and one on others.
I'm praying like mad that it continues to go smoothly, that I don't have to increase the number of beads in any of my capsules, and that I'm done counting for good.  I still have about 70 empty capsules left, along with those hundreds of beads...so if I need to tweak as I go, I certainly can.

I'm also thankful that I at least have access to the medication I currently need.  There are so many people who've had to go cold turkey off of this stuff because they completely lose their insurance or prescription coverage.

Please join me in prayer this evening for those who need medications that they cannot afford or have no access to.

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Please also join me in prayer this evening for the Spader family, especially Tony and Stephanie, and their dear, sweet daughter Rebekah.

Monday, March 9, 2015

Shower of Roses giveaway

There is a lovely Catholic blog called Shower of Roses.

This week, the author has compiled an incredible list of Eastertide products and resources, and she's also put together a beautiful collection of things which are being drawn for in a giveaway.

Go on over and visit.  The way to get entries into the drawing is to go to each of the links, and then verify that have done so.  There are etsy shops, retail sites, Facebook pages galore (YES, please clutter my news feed with Catholic goodies!), and a few other odds and ends. 

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Speaking of social media, I've decided that there is enough going on in my life here at home that I actually kind of need the outside link to the world.

Here's the thing: in a typical week, I leave my house once.  Definitely once.  Mass on Sundays.  Before Mass, I rehearse the week's music with the choir and maybe a little bit of next week's music, too.  After Mass, I stand in the narthex with lots of other people and try really hard to give my attention to at least one dear friend for more than 2 minutes.  Usually, I end up sitting with Honey Bee on one of the two stretches of pews to give her a little milkies.

I don't get to go to choir rehearsal.  Rehearsals are on Thursday nights.  Frog works most weeknights.  Pickle and Reepicheep are in the school musical, and have rehearsals on Thursday nights.  It's a good thing I have an incredibly gracious choir director who lets me sing with the choir even though I am not able to be at rehearsals.

Date nights used to be a regular thing, but with the increasing number of musical practices (impending performance and all that) and the Frog's evening job, there just isn't anyone to watch the four littles.  We don't do babysitters--they're scarce, I'm not terribly trusting, and our budget is very limited.

So......social media is back in.  There are Mamas there.  There are people with fibromyalgia there.  There are Catholics there.  There are a huge number of priests and seminarians there, and even several religious sisters.  It's not an entirely bad place to be.

This last week, especially, was not one of my favorite.  For about a week preceding, there was a cough going around the family, and then my Honey Bee popped a fever.  It topped out at 103.5 under her arm, and I felt solidly good about medicating that fever.  (I am one of those Mamas who doesn't reach for the meds immediately: until it gets to be about 101 or a little above, I would rather let it do what it's supposed to do.  Tepid baths and cool cloths are great for comfort.  Obviously, if one of my little ones is in pain, I do what's necessary for comfort.)

Hence the visit to urgent care (because the clinic could not get us in for a few days, even though I said, "My littlest one has an ear infection, and I think my eldest has a scratched cornea.").  Five hours.  Six of us seen.  Lots of meds being juggled.  And we're on the upswing now, thanks be to God!

But when a Mama's buried beneath a pile of coughing babies, Mama sometimes needs to be able to connect with other Mamas who know just what that's like.   And those Mamas are there on the social media, the facebook, the place where we meet people on a regular basis whom we might not ever meet in person.  It's an interesting time in which we live...today I'm glad for the facebook.

Thursday, March 5, 2015

The rich musical beauty of Lent

For years, we attended a parish where the music during Lent was sparse and nearly austere.  It was like being in the desert for the senses; the water of the Holy Water fonts was replaced with sand, no incense was used (well, to be fair, no incense was *ever* used in that parish...), and there was very, very little singing.

The parish we attend now is not that way.  Not at all.

I am so grateful.

Lent is enough of a desert.  We are mindful moreso of our eat and drink.  We practice personal sacrifice and mortification.  We give more than usual, and hopefully until it hurts.

And the liturgical beauty is incredibly, incredibly rich.

The Kyrie is chanted like this.  The men intone (sing first) the Kyrie, then the people.  Then the women sing the Christi Eleison, and then the people.  Then the men again, and then the people.  It's beautiful, and our whole parish sings with great fervor.

The Credo is chanted like this.  And yeah, it totally adds to the length of Mass.  By an entire five minutes.  And we like it!!

We always have a beautiful choral anthem: this past Sunday, we sang Morten Lauridson's O Nata Lux.  The week before, we sang one of the choruses from Handel's Messiah.

The Mass parts are chanted as well.  And the Pater Noster--the Our Father--is also chanted, like this.

And if I can put my hands on a link for the stunning choral Agnus Dei that we sing during Lent, I'll post that link here as well.

I cannot for the life of me think how in the world, with such a musical feast before our souls, how one would choose to go without.  There are surely enough sufferings to be had.  To have a taste of Heaven at the Mass...well, isn't that the point?

Wednesday, March 4, 2015

We've been hit!

It's not a good time to visit my house.

Bronchitis: 4 of us (me, Squash, GinGin, and Honey Bee).
Ear infections: 3 (one double for my Honey Bee and one for Cuppie).
Tonsilitis: Cuppie.
Sinus infection: me.

I've rarely had to juggle so many meds for so many in my family.

Prayer request: the health of my family, and most especially the health of all those dealing with much more miserable and serious health issues than ours.

Monday, March 2, 2015

I fell in love this weekend.

I have three albums by the Benedictines of Mary, Queen of Apostles.  Of late, my little Honey Bee has been drifting off to sleep to the dulcet tones of the sisters as they sing and chant on Lent At Ephesus, and I also have Advent and Angels and Saints.

I've been listening to the beautiful music night after night, knowing much of the music, and not knowing plenty.

So the other night, I grabbed the cover insert from the CD case and took a look while I listened.  I happened to be on Track 12, which is the Tartini Stabat Mater.  I'd heard the Latin text before, but had not really taken the time to see what it meant, nor why it was written.

Whoa.  Blown away.

In some aspects, I'm so much my faith and so much my humanity.  This, I suppose, was a humbling moment of humanity.

This beautiful sequence was written in the 13th century and is meant to be sung as a meditation between the Stations of the Cross.

This is the translation found in the booklet:

The sorrowful Mother stood
weeping beside the Cross, while her
Son hung thereon.

A sword pierced her sighing,
compassionate,
and grief-stricken soul.

O how sad and how afflicted
was that Blessed Mother
of the Only Begotten!

How she grieved and suffered,
that loving Mother, when she beheld the pains of
her glorious Son.

Who is there that would not weep,
if he should behold the Mother of Christ in such
distress?

Who could refrain from grieving,
if he should contemplate the Mother of Christ
suffering with her Son?

For the sins of His own nation,
she saw Jesus in torments
and subjected to stripes.

She beheld her sweet Son
dying, abandoned,
until He yielded up the ghost.

Ah, Mother, fount of love,
make me feel the force of grief,
make me weep with thee.

Make my heart burn with love
for Christ God that I
may be pleasing to Him.

Holy Mother, mayest thou bring it to pass that the
wounds of the Crucified be deeply impressed
upon my heart.

Share with me the sufferings
of thy wounded Son,
who thus deigned to suffer for me.

Grant that I may be wounded with His wounds,
that I may be inebriated with the Cross and with
the Blood of they Son.

May I be defended by thee
on the day of judgment, O Virgin,
lest I go down to be burned.

When, O Christ, the hour has come for me to
depart hence, grant that through Thy Mother I may
obtain the palm of victory.

When my body dies,
grant that my soul receive
the glory of Paradise.  Amen

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When I read this text while hearing the sisters sing, I could not help but weep.  Give it a listen: I bet you will, too.

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Prayers answered:
The woman whom I mentioned in an earlier post, named Virgina, has been rescued.  Read the details here.  I would loved to have named my friend, Fr. Paul Arinze, in my earlier post, but because of the possibility of extortion, the diocese asked for a media silence until the situation was resolved.  We heard about Mrs. Arinze's abduction at Mass the first Sunday of Lent, and within one week, we then heard of her rescue.  Thanks be to God!!!

Thursday, February 26, 2015

Thursday thoughts

I've found it rather refreshing to be away from the facebook thing over the past week.  Though it wasn't specifically asked of me by Fr. Eric, I decided that a fast from something I spent a lot of time looking at was a good idea.  I do miss the interaction with my friends.  Facebook connects Mamas like me, who are home all day to school and raise up our families, with the outside world.  The added factor of living a fair distance from the main action means that I frequently feel isolated and lonesome.  I know there are other Mamas out there who will know just what I mean.  Although I am surrounded by my babies, I long for the conversation and company of other adult people, mostly other women.  I need the connection of hearts and souls that comes with the bond between women.

It's more challenging than one might think.  Trading child-minding with other Mamas is a good idea, but it falls more difficult for me.  My anxiety sometimes makes it difficult for me to prepare to leave the house, even for things I ought to look forward to.  And if it's a flare day for my fibro pain or my back, leaving the house can sometimes prove nearly impossible.  Sounds like a lame couple of excuses, I know, but it's what's put before me.

I continue to pray for so many friends.  I also continue to pray about just how much I can truly write here.  There are things which have happened that need to be thought out carefully and processed fully in my heart, but they are things which affect other people.  It's not always up to me what I can put down in my little space here.  Please pray for me in this.

Monday, February 23, 2015

To ask for suffering

Over the past couple of years, I've been praying for the grace to suffer well, as Fr. Eric says.  The spiritual work of mercy calls it "bearing wrongs patiently."  In addition to humility and patience, forbearance is what I struggle with most.

There's been plenty of opportunity, some of which I'll write about here, and some of which I just need to allow to rest in my heart.

I've found myself praying to ask for more opportunities to bear gracefully the challenges of life.

It seems that those around me are being placed in my life so that I have someone other than myself to pray for though.

I have a classmate who's fighting breast cancer.  She's one of the sweetest, most selfless people I know.  She has a beautiful family and a love for Jesus which inspires everyone around her.  Please pray for Jill.

I have another friend who so recently buried her husband.  He was diagnosed with cancer and died not even a month later.  He fought every second with amazing strength and grace and faith, always with a smile and a laugh, always with a word of encouragement for everyone around him.  His name was Paul.  Please pray for the peaceful repose of Paul's soul.  His beautiful wife is due any day now with their sixth child.  Sadly, babies four and five, twins, were lost to miscarriage last spring.  The joy of learning they were expecting again was radiant in both of them, along with their three little ones.  Now, this Mama and her babies are beginning to find ground beneath their feet again.  Please pray for Annie and their children.

My Darling has such a big family: his mom was one of fourteen children.  This year on Ash Wednesday, one of his uncles died very suddenly.  He was only 57 years old.  He leaves behind a lovely family--his beautiful wife, four children, and a passel of grandchildren.  Today we will attend his funeral.  Please pray for the peaceful repose of Ray's soul.  Please pray for his family.

We were told some very upsetting news at Mass yesterday: the mother of one of our dear priests was kidnapped.  Virginia lives in Nigeria.  The note left behind says that a ransom will be demanded for her release.  Please pray for Virginia.

There is so much to pray for, so many souls to love.  I thank you for joining me in prayer for those in my life.

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There are joyful things in life, too!  Since Wednesday was Squash's birthday, and since GinGin's birthday falls at the very tail end of January (but we've been busybusybusy), we had a double birthday party yesterday.  And My Darling treated me specially: since we have so many big parties for birthdays, with many family and friends celebrating with us, he bought me a big double cake pan.  So yesterday's cake was lemon (requested by GinGin), and strawberry (requested by Squash)--two cakes, one pan, batters swirled together to make a delicious strawberry-lemonade cake.  We had six cousins, three uncles, three aunts, two Grandmas, and a Grandpa here to party with us.  It was great!

This is our Birthday Season.  It kind of tickles my Catholic funny bone a little bit that we have so many Lenten birthdays in our family.  Squash's doesn't always fall during Lent, but this year of course it was on Ash Wednesday.  Frog's is almost always during Lent, though usually closer to the beginning.  My Darling's is next, just 11 days after the Frog.  And Pickle will have his second Holy Week birthday this year.  I guess God has quite a sense of humor!

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The book I'm reading, The Face of God, is absolutely beautiful.  I've always longed to visit holy Rome, but even moreso now, the more I learn especially, I find my desire shifting more toward Manoppello. 

Friday, February 20, 2015

Three Years Hence? Indeed it has been.

I have begun this Lent by asking my spiritual director what he would ask me to focus on this year, in hopes of deepening my faith and my interior spiritual life.  For my physical mortification, he has instructed me to refrain from the sweeter things--sweet drinks, delicious treats, that sort of thing--while not neglecting fruits (and he did say I could have a bit of honey in my tea or a sall amount of sugar in my oh-so-necessary coffee.  It's actually more difficult for me than I had thought it would be: by default I often choose chocolate milk over white, or a bottle of orange Fanta rather than water.  And I love a couple of spoonsful of hot chocolate mix in my coffee, topped off sometimes with French vanilla cream...and so now as ever, I must be deliberate in my decisions, and this can only be a good thing.  I was thinking earlier about how much I could miss the sweet things.  And considering my love for chocolate, I really could miss them terribly!  But all the better for my soul, I do hope.  I've wanted to eliminate refined sugar for a long time.  It would be so good for me in so many ways...so I guess I ought to thank Fr. E for giving me this particular work.

His second assignment for me is to read a specific book.  We had a conversation about one of the places he loves to visit in Italy, namely Manopello, where there is displayed the image of Our Lord on mollusk silk.  The book to which he referred me is called The Face of God: The Rediscovery of the True Face of Jesus by Paul Badde.  I began reading it just last night, and I'm definitely hooked.  I love the tests that are done in attempts to authenticate things like this miraculous veil and the Tilma of St. Juan Diego from Guadalupe bearing the image of Our Lady of Guadalupe.  I was tired last night, and so I am still reading through the first chapter.  I hope to explore my understandings here.

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I had forgotten what a refreshment it can be to come here to write.  I've left so much of myself by the wayside in recent months, even years, and find that I need to begin peeling back the layers once again.  It's astounding to me how drastically things can change in what seems an eternity whilst among the thorns of the valley, but in the grand scope even of temporal existence is truly a mere moment.  The past two years, especially, have been for me nothing short of early Purgatory while walking the Earth.  I dare to hope that some of the suffering here has done good for some poor soul on the other side of the veil of death.  Indeed, I offer willingly my hours of purification in profound supplication for the souls of those closest to me.  Don't ever forget the poor souls in Purgatory.  Pray for them, offer sufferings for them, and remember that someday you may well be joining them and existing in the hope that after your purification is complete, you shall behold His Face.

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Last year at this time, I was in hospital.  I had been taken in because of back pain so severe I had been crawling about the house for a week.  I hated to go.  My babies needed me...but they needed me whole, and I was anything but.  During my stay, I was diagnosed with degenerative disc disease and fibromyalgia--which I had suspected for years, but since the diagnosis tends to be one of exclusion and something of a collection and tidy binding of symptoms, and since I scarcely ever went to the doctor before my hospitalization, I had no official diagnosis in my chart.

Suffice it to say, this last year has found me in search of various remedies for the pains which ail me on a continuous basis.  I have many good days.  I have days where, although I have pain, it does not plague me so intensely.  I have other days where I am glad to have a walker, or a cane, and I am always thankful to have my handicapped parking tag. 

I have found a tremendous respect for physical therapists.  My therapist is a gem--she's kind, she's funny, she's very knowledgeable, and she is enthusiastic about helping me strengthen my body so that I can live like a person rather than like a lump in a chair.  So many days I feel like just a lump in a chair.

Of late, I have been reducing the dosage of Cymbalta.  I had been taking 60 mg each day; by tomorrow, I will be taking 30 mg each day.  It's a very slow process, because to wean from this medication is to create a maelstrom of withdrawal effects.  It's awful.  Honestly.  The weaning process involves opening the capsules, counting the individual, tiny beads in each one, and removing a certain amount, increasing the amount removed each day.  Those who've been studying the process recommend that for each year a person has been on the medication, it should take six months to wean off of it.  I've only been on Cymbalta for six months, so I'm one of the lucky few who can take a larger number of beads out each day.

Math: not my friend.  This process: math.  Bah.  Humbug.

I take two 30 mg. capsules each day.  There are 250 beads in each capsule.  I am removing eleven additional beads each day.  This means that the weaning process will take me roughly 8 weeks by the time I'm done.  And tomorrow is the half-way point, thanks be to God.

So far, my withdrawal effects have been minimal: I've had a couple of really overwhelming headaches, plenty of brain fog, and some tidal waves of emotion.  Not always sadness or anxiety--but just emotion.  And as ever, My Darling remains by my side, supporting me and understanding me and holding me so I don't become exhausted while treading this water.