Category: Uncategorized

Humira, I think you and I are going to get along fine.

· Leave a comment ·

So, since we are clear that this is now an RA blog, I won’t feel guilty at all about blathering on about my RA.  I finally got the go ahead to start Humira last month, and had my first shot two weeks ago.  I guess I shouldn’t have been so excited about starting Humira, since that meant I had reached a point where I was considered to have moderate to severe disease, but lots can change in one year.

One year ago, I had just been diagnosed with RA.  I was still reeling from the punch in the gut that news was and trying to wrap my brain around the toxins I was now going to have to ingest to stave off crippling deformities.  Initially, I remember telling my sister that I would not take them.  I had no intention of using Methotrexate or a biologic as I was still thinking I could eat clean and kick this thing, but like I said, lots of water goes under a bridge in a year.  I quickly discovered through research that aggressive treatment is what is recommended and that you have to go through a process where insurance sort of gets to choose the order and introduction of treatments.  I also learned that pain is a great motivator.  The exhaustion was initially the worst aspect of this disease.  I cannot quantify or adequately describe what it was like, but it is the kind of exhaustion where laying down to cry [or die] sounds like a great plan.  The methotrexate doses had to go up and up until I maxed at 23 mg each week, injecting what looks like antifreeze into my thigh or belly.  The side effect of this drug is also exhaustion, so by late last spring I was no longer even an approximation of my former self energy-wise.  Adding in Plaquenil this fall gave me back my energy, thank heavens, but did not really help with the ever increasing pain and swelling.  Each day I would awake to a new hellish joint pain or swelling– balls of feet, tendons in my arches, tendons in my heel, knees, wrists, thumb joints, knuckles, neck, jaw, you name it, I feel like I have dealt with it.  The tendon issues in my wrists eventually incapacitated me by making it impossible to make a fist and grab or grasp things.  These mornings, I could barely get dressed, I could not hold a cup with one hand, and my students had to take the caps off my sharpie markers.  I got used to walking like an old woman every morning and asking people to help me open and close things.  I dropped out of Zumba, stopped walking, running, hiking, and gained 15 pounds.  My hair fell out in gobs until sometimes after a shower I would cry looking at my scalp showing through what used to be wonderfully thick hair.  I had to become creative with haircuts, color, and styling products.  “Luckily,” said my sylist, “you started out with lots and lots of hair.”  Yeah.  Now, I don’t really get obsessed with the hair any longer or the weight.  I just want to be able to dress myself and walk and exercise again.

Humira arrived from a special pharmacy, in a special cooler, with a special co-pay plan [so I don’t have to pay the $25k a year that it actually costs], and a special coach who calls to remind me to inject and listens to my concerns.  The first injection was unremarkable.  I was pretty frightened of what side effects that I might have, but I really haven’t had any to speak of other than decreasing pain and swelling- hell yeah!  The day after I had a headache, 3 days after I heard a wooshing sound in my ears that was like being underwater, but it did not last more than 20 minutes.  I was on 10 mg of prednisone a day to get me through until the Humira kicked in, and within a few days I was down to 5mg, and this week down to 2.5 mg.  I will go to 1.25 mg. next week and then let it go the week after if all goes as it has been.  Tomorrow is injection #2 and I had breakthrough pain this morning, waking to swollen and sore wrists and thumbs.  I guess that means it is working and for that I am truly grateful.

I have read that this TNF inhibitor can raise HbA1c levels and so I am trying to watch my sugar intake and increase my exercise as I can.  It is true though, what they say about invisible diseases.  No one really knows what I go through other than Bean.   It’s like fighting this giant dragon every day but no one really knows that you are doing your job and fighting the dragon at the same time.  I’m not sure what difference it would make if they did.  I don’t guess I deserve a medal for it or anything, it would just be nice not to have to fight him.  Right before the Humira I would feel sometimes like I wanted to quit fighting, but Humira has given me some new life/hope.

PS:  If you’re on it, drop me a note.  I’d love to hear your Humira story [or your biologic story] and if it made you gain or lose weight.  Also, I would love to know what you do for the thinning hair.

Dear Bean

· 1 Comment ·

I thought about writing your Valentine letter on here so that it could be digitally immortalized, but then thought that it’s a bit too intimate to share with the entire world [or whatever infinitesimally tiny slice of it might ever visit this blog].  So, I decided to just share a little poetry with you.  I gave you a picture of the two of us in Moonlight Kingdom character form which read “you are my grandest adventure.”  This poem sort of exemplifies that notion and made be think of you and of us and this adventure we are living each day–this adventure which makes me always look forward to the next day and the days after and makes them all ripe with possibility.  This poem is by E.E. Cummings, American poet, and was first published in 1931.  He was a rebel and so we have that in common.

somewhere i have never travelled, gladly beyond

somewhere i have never travelled, gladly beyond
any experience,your eyes have their silence:
in your most frail gesture are things which enclose me,
or which i cannot touch because they are too near

your slightest look easily will unclose me
though i have closed myself as fingers,
you open always petal by petal myself as Spring opens
(touching skilfully,mysteriously)her first rose

or if your wish be to close me, i and
my life will shut very beautifully ,suddenly,
as when the heart of this flower imagines
the snow carefully everywhere descending;

nothing which we are to perceive in this world equals
the power of your intense fragility:whose texture
compels me with the color of its countries,
rendering death and forever with each breathing

(i do not know what it is about you that closes
and opens;only something in me understands
the voice of your eyes is deeper than all roses)
nobody,not even the rain,has such small [skilled] hands

This poem was written by a man for a woman, but it translates well either way.  The last line indicates that the lover’s hands are smaller than the rain’s in the sense that the rain can open a rose with raindrops for hands..  so I think a better word here would be skilled and I have noted that in parentheses.  Stanza 3 discusses the lover’s intense fragility which works well when talking of a woman, but also works well for us, in my opinion because I see your intense fragility as the vulnerability you work so hard to obscure and protect but that I can see right through and into… . Happy Valentine’s Day, Bean.  I love you.  Forever.

2015

· 2 Comments ·

My resolution-just for the day- was not to chase squirrels and here I am chasing a squirrel already.  I have not written since September as this fall was a whirlwind of activity, all summoning change.  So, here I am at the dawn of 2015 looking out at the start of this journey and all I can see is a tiny slice of the path.  I am entering an unknown in the form of a new job doing new things in a new school system in another city.  Cliff diving is what I have been comparing it to.  So, I stand here during the first week of January with cold toes clinging to sharp rocks ready to dive off a high cliff while not being able to see the surface of the substance I am diving into.  I’ll let you know how it works out.

rabbit, rabbit, rabbit

· 2 Comments ·

Rabbit, Rabbit, Rabbit.  I remembered to say that this morning, the first words from my lips.  It is a good luck verbal talisman that somehow arrived to our household when the kids were little, but their Daddy was the only one who usually remembered to claim it each first of the month.

Today is Labor Day, 2014.  I am fifty years old.  I have had one hell of a year.  Here are some of the things that happened surprise birthday party for my 50th, lost more than 40 pounds, found about 10 of it again, became terribly ill with joint pain and debilitating exhaustion, was diagnosed with Rheumatoid Arthritis, started injecting toxic yellow-green liquid weekly, suddenly needed a pill organizer, started and learned a new part-time job, began having hot flashes, took several terrific vacations, got engaged, teetered on the edge of debilitating depression, zumba’d sometimes, laid in bed sometimes, cried a lot.  

Here’s what I’d like to do in my fifty-second year [I think that is what you’d call the year after you turn 51- my menopausal/chemo brain is math impaired]:  go into full chemical remission, get my groove back including all my energy, straighten up and clean out this house, plan a wedding, run a 5k the whole way, lose the last 20, become addicted to running.

On July 31st, seems like a lifetime ago, I said good bye to Facebook for a month.  I didn’t really miss it much.  Here is what I learned during my Facebook fast:

  • you can get your news in other venues than FB
  • Facebook is a very bad habit like biting your nails that sucks time away when that is the one thing of which we all need more
  • I used to use FB as a filler, something to look at when bored, and apparently I was bored about 38+ times a day
  • I used FB to procrastinate
  • without FB I actually began to read books again
  • without FB, I am more engaged in life and other people [that should have been a no brainer]

This morning, my fast could have been broken, but it is after noon and I have not peeked yet.  I’m not that interested any longer.  I woke up and lay in bed reading this really great new book I am reading, The Husband’s Secret by Liane Moriarty.  It is a book about a woman in Australia who finds a letter addressed to her and written by her husband that is marked “to be read after my death.”  She finds out a secret about her husband that poses the question, “how well can you really know anyone?”  I have always known that we all have secrets– shadow selves… dark sides–and I tell Bean this all the time.  I have glimpsed some of his shadows, but I am sure there are more.  The detective in me wants to unearth them.  My imagination is far worse than reality, at times, I am sure.  It is perverse in the possibilities it proposes at times.  It is full of stories waiting to be told.

And so, this entry is about looking back, but more importantly about looking forward.  I am surfacing.  I’ve seen that dappled light before, and it is a welcome sight.

 

When the Bread of Life contains Gluten

· 2 Comments ·

I’ve been staying away from church for a number of reasons.  I walked away from my church of 25 years over a year ago because of a priest and some church members who thought that buildings were more important than people, but that is another story and lots of water long gone under a bridge.  I started attending my son’s church because I loved his minister and because I enjoy my son’s part in the praise band, but after that favorite minister left, I began spending more weekends in another town staying at Bean’s and sometimes attending his church, but overall, mostly hopping back and forth between those two churches. Then RA struck, and I became angry and depressed and yes, maybe God was sometimes a target.   Fast forward to 6 months ago, when I realize that gluten is poison to my body and that quitting it heals my eczema, alleviates some of the pain in my joints, and may help mend the leaky gut that might have led me down the autoimmune path in the first place, and my newest reason to stay away from church is…  I’m allergic to God.

I mean, really, come on… first there was the God the Father thing that is so hard for children who have abandonment issues or who have been abused by their father figure, and now, well, this sort of feels like abandonment, too.  I went back to St. Mark’s this summer and picked a perfect day for it as Bishop Curry was in the house and rockin’ it with one of his energetic and engaging sermons, but when it came time to come to the table so to speak, I was excluded.  The liturgy invites us to come, to eat, it shares the words of Christ, “take eat, this is my body which is given for you… do this in remembrance of me.” I used to be a lay minister.  When the priest hands you the host, he or she says “this is the body of Christ, the bread of heaven.” So, sitting there, I felt and I feel separate now from God.   I am gluten intolerant.  I am God intolerant.  His body is poison to my body.  That is heavy stuff right there.

At Bean’s church they have gluten free crackers for people like me.  We have to ask for them, though, and I don’t like that.  I don’t want to be singled out.  I don’t like being that girl, a problem, a food nut, high maintenance….  I don’t want to bring attention to myself that way.  When I told my old friend at St. Mark’s the reason I didn’t come to the altar that day, he said okay, like he was confused about why I might have told him this.  I was telling him this, because I wanted to come back.  I want to be welcome at that table again.  I want to be able to come to the table and not have to cross my arms to receive a blessing only.  I don’t want to be allergic to God.  At our church, we use these pressed wafers.  Why not have them all gluten free.  You can barely tell they are bread anyhow.  I wonder if the body of God had gluten when Jesus broke bread with his disciples at The Last Supper?   I can eat many ancient grains- teff, amaranth, millet.

It’s estimated that 1% of the population has celiac disease.  That’s not a huge percentage, but that is a good number of people who find themselves unwelcome at God’s table.  It’s food for thought.  Churches might consider this when deciding if they are inclusive and welcoming.  It’s just one more thing, and it might not seem like a big deal, but it feels big to me.

We might as well just admit this is an RA blog

· Leave a comment ·

I read the news today, Oh, boy… That song is in my head this morning after news this week of Robin Williams’ surreal death, evidently taking his own life by asphyxia.  That would be hanging, I guess.  Hearing this made me incredibly sad; that this ball of energy and life surrounded by a world of people who love him could not reach out to just one person.  How dark must be this place where there is no hope, where someone can see no future that is worth walking toward. I pray his children can find comfort and peace.

I am on a Facebook fast, day 12, and so I heard the news via text from J, who likes to share news with me or pitied that I was not able to learn this news through FB, the largest news conduit on the planet.

I haven’t missed it really.  I miss the escapism it offers in moments like waiting rooms, bathrooms, and just waking up in bed when I don’t really want to get out of my soft, warm, wonderful bed, but I still want to connect in some passive way to the world outside my window.

My internet is not working again.  This conspiracy gets me to write this morning [Tue].  My ADHD will be clearly apparent with the next topic I bounce off to:  my RA.  I started a trial of controversial antibiotic masquerading as a DMARD, Minocycline, about 5 days ago, maybe a week, and I felt very depressed initially.  Perhaps, I still do, I still am, and I am just getting so used to it,  so now it seems normal.  I feel flat like those gimmicky dolls of my childhood- Flatsy.  I feel unaffected, not happy, not particularly sad or angry or worried or anything else…. just flat, like a soda that has lost its bubble and sparkle.

I can hear your thoughts as you say, omg, an antibiotic cannot make you feel like that, but I disagree.  I am, if nothing else, fairly highly self-aware, you might say self-absorbed, but I like to think of myself as self-aware.  I know my body and my feelings and my reactions, and so when I began to feel the life seeping out of me, the energy bleeding out like the helium slowly escaping a balloon, I did what any self-respecting busybody researcher would do, I googled it.

And, indeed, Minocycline is one of the few antibiotics that crosses the brain barrier, so I am deactivating macrophages and killing mycoplasmas and God know what else from my brain at this very moment.  Apparently, those very macrophages or mycoplasmas are key players in the animation of my existence; and as they die off, I become increasingly morose.

Yesterday, while in the office, my suite mate who is sort of cross between my youngest son and a number of Judd Apatow characters kept asking me questions, and it was like I was on a delay.  I couldn’t answer very quickly and when I did, my voice was planking like the tall policeman brother’s voice on Everybody Loves Raymond.  He said, “do you have your earbuds in, or something?”  I said, “no, I’m just trying to figure something out, here.”  Which was, in fact, the truth, I saved the wrong file to the wrong file location and had to switch them back before my newly decompensating brain forgot and left them that way.

I am eating too many carbs, because my stomach is becoming more poofy and obtrusive. Betty, I call her when she makes herself known by pooching out overtop of my shorts and underwear and making my middle less like an oreo and more like a fatly stuffed whoopee pie.  I don’t like her and I don’t know why I cannot stop eating carbs.  It’s just food-fuel-stuff to keep me going.  I am medicating with food, ding.ding.ding. <light.comes.on> and so the dilemma is this:  Do I stop taking this drug that might help my RA so I don’t need to medicate with carbs? 

Hold it, on day 5, let’s see where I am there:  energy level—vacillating at an unsatisfactory level, stiff toes, fingers, neck, intermittently sore all over…so, clearly, the jury is still out. 

Do I add yet another drug, perhaps, an antidepressant finally… I am thinking I would ask for Wellbutrin since it has a stimulant effect and might keep me from eating so many carbs. Bean says that you can’t get an anti-depressant when you have been depressed only 5 days, but I feel like I am an exception [shocker].  Since, I was depressed for like 20 years and I didn’t get any antidepressants at all, so I am long overdue for some.

And, is this just menopause?  Old age ain’t for sissies—seriously.  It’s hard to keep the conditions straight and figure out if the exhaustion is due to one or the other or any of the myriad medications I now have to take, or environmental… like because we live in this never-ending recession and our bills keep taking bigger bites of our pay… hmmm..

I have to stop ranting.  It’s so unattractive. 

On to the upsides [if I can find some].  I am on a Facebook fast.  I don’t really miss it.  I still have hair.  I can walk.  I still have a sense of humor.  I have the best boyfriend /fiance ever.  I have two jobs.  I have super grandkids– my kids are pretty cool, too, but they have issues, and so the grandkids win.  I have a roof over my head, which is critical since we now live in a rain forest environment.  I have a very sparkly engagement ring that reminds me every time I look at it that somebody really special thinks I am special and wants to spend his life with me.  I have faith and hope and love, and really, that is all I need. 

engaged

Goodnight, Maya

· Leave a comment ·

There is no mourning here…

[a poem for his mother by Guy Johnson]

Sequined in the black velvet sky of night 

shines a star with

fiery hot fire possessed,

leading all those who wish to claim

what is right

to look within themselves and find their best.

Over my life shines this glorious beacon,

lighting my path through the dark shadowland.

With this as my guide,

I shall not weaken..

my striving to be a strong but gentle man. 

Others have been led by its incandescence

to be more than mere flesh and bone

to love and be loved is its true essence

for only the heart can change this world of stone.

Thus fortune graces me like none other

for this star, this nova

is my mother.

 

How long do I have to wait for some biologics?

· Leave a comment ·

I’m having a bad day.  Hell, I’m having a bad week..month.. year.  I alternate between being a super stoic and what feels like a big baby.  On bad days, I can be short-tempered, ignore you, or be downright mean.  I feel sorry for myself way more often than I want to.  Tonight is injection night and I don’t want to stick that needle full of antifreeze into my thigh because today I don’t have much evidence that it is working.  What it does do is make me crazy, exhausted, and sick.  I guess it’s working, because I am making it through each day.  I’m still working two jobs.  I am keeping my head above water.  My feet don’t feel broken when I step onto them each morning, but this disease is so capricious in its expression that I feel like I wake up every morning on some demented game show– What the Fuck Hurts Today?  This month, the background music has been the pain in my neck that makes me walk funny and behave like a manikin.  A few of the contestants have been the nails in the tops of my feet, my aching and useless left thumb, and my left knee.  Even my jaws hurt.  The day I saw the doctor last, must have been a good day, because I gave myself 2’s and 3’s.  I am not sure I have had that good of day since.  I find myself wanting to tell this doctor how great it’s going.  I don’t want to tell her that I feel like I am failing on Methotrexate.  I did ask, “how long until I feel good again, like, I don’t hurt?”  She said, “now come on, you’re fifty, it’s not ever going to be perfect.”  I don’t want perfect, but I do want my life back.

I don’t want my blog to be a big whine fest [especially since I am not supposed to even have wine with Mtx].  I don’t want to have to ask for an antidepressant.  She already gave me Tramadol for pain, so clearly she is pointing me in that direction.  I have always been the no-nonsense girl who finds depression so self-indulgent.  If you have time to be depressed, I’ve always thought, you don’t have enough to keep you busy.  But now, I find my boyfriend telling me I need to watch out for depression, like it might be sneaking up behind me.

And other than my sister’s good fortune today, he was the bright spot in my day–my Bean.   Tonight, he went to the drugstore and then to Wal-mart and bought me all kinds of goodies.peas ice bag tens

Icy Hot patches, disposable tens units, peas ice bag, ice bags to fill [large and small], and so much relief in a couple of bags.  So, now, I sit in the corner typing as my neck crackles, ripples, and pops in mini spasms from this tens unit, appreciating someone who took the time to take care of me today.  It makes me seriously tear up in gratitude.  ❤