Extension Denied

It’s April 19th, my taxes are not done, and I cannot find my W2s from PCS.  *&^%!!!  I know, you would think I would have figured this out prior to April 15th, but I didn’t.  The week before I was on spring break and I was not going to touch them that week.  Come on, I was at the beach.  I figured, I’ll have three days after we go back to school, but that week turned out to be the perfect shit storm of IEP meetings, ESY meetings, ESY packets being due, progress reports being due, and a veritable laundry list of obligations that gave me every reason to file for an extension.  Only April 15th came and went in a haze and, while, I had a vague sense of there being something else I needed to be doing, I only remembered what that something was the next morning.  When I went quickly to file the extension, I was informed by TurboTax that extensions can only be filed prior to midnight on April 15th- Holy Cannoli.  I was not in a panic, as what’s the worst that can happen?  They can’t eat me.  For goodness sake, I am a public servant, a single teacher who spends all her money buying stuff for her kids and classroom.  There’s not a lot to be had here, Uncle Sam.

So, this weekend I have been like a dog chasing her tail… looking everywhere that a misplaced W2 might happen to hide- to no avail.  So, I gave up, and ate the tail end of a chocolate bunny.

That is the story of my weekend.  Giant. Chocolate. Fail.

the unexpected hazards of optimism

I remembered to use my REI coupons and points this morning before they expire– go me.  If you also need to, here’s your reminder; you’re welcome.  I can barely type this because my right hand is seizing up again.  F*@k!  

This morning I sent my sisters a copy of one of the memes my mother posts where there are like a hundred smiley faces and you have to find the one sad face… and if you do, you will have good luck for a year if you share this with people who will then want to slap you.

I sent her a screen shot of Mom’s meme [sorry Mom, no offense, it’s one of your charms, actually] followed by the text: “when old people use Facebook,” only in order to take this screen shot I had to be able to use my hand, which I couldn’t do.  My message read:

photo

So, now here I sit trying to type this blog post with my gimp right hand that is… thumb, knuckles, wrist joint and tendon swelling:  the perfect storm that equals can’t open or close my hand, can’t grip, can’t lift, can’t twist, dress, brush hair, you get the picture:

photo 2photo 1

This post is really a data time stamp post– a #3 Humira injection 4 days ago and I am still   F*@#ed  post.  Bean said, “what do you think happened?”  I said, “basically, me.”  I forgot to take my Plaquenil [both doses] yesterday.  I tried tapering my MTX from 9 to 7, and I have also been trying to taper down on the prednisone- I had made it down to 1.25 mg a day with 1 800 motrin this week almost daily.

So, there’s that.  The optimist shoots herself in the hand.

A tiny triumph, a look back, and an impending exorcism..

So, I’m pretty sure that there might not seem anything super impressive about a walk/jog to the end of my street, back, and around the circle.  Really, I’ve done it a thousand times and you might be able to do it 10 times as many as I can, faster, and backwards, but it’s the first time I have jogged in I CANNOT REMEMBER WHEN… maybe a year!  I am so excited because this means the Humira is WORKING!!!  It’s been at least 6 months since I attended a Zumba class and that was only 1 or 2 trying to get back into it.  I did climb a mountain last summer [I don’t know how the hell I did that], but I began quickly deteriorating at the end of last summer and I am just now surfacing again.  So there, that’s the RA news flash of the day.

In other news, spring break was wonderful and relaxing and so not long enough.  We went to Topsail for almost a week and it felt like a couple of days.  I really needed that time.  I did manage to read an entire book; Doctor Sleep by Stephen King.  It’s the sequel to The Shining and it was a fast and good read.  I discovered SK late in life [in terms of reading his work instead of watching it], but I am so glad I did because he is such a consummate writer.  His writing is easy and familiar like a soft shirt, his work so well crafted that it worms into your head and you find yourself thinking of the plot throughout the day and longing to get back into the book to see what will happen next.  I do not like horror as a film genre, but I have always had a taste for the macabre and weird, and his work fits that bill perfectly.  11-22-63 has been my favorite yet; I’m a sucker for time travel.

Unfortunately, our blissful spring break was punctuated by shenanigans by our nemeses– narcissistic/borderline, serial adulteress and the geriatric, wingnut mark who has turned out to be a deadbeat hothead loser.  I feel a short story or a novel coming on and boy are they giving me fodder by the mile.  I almost feel sorry for them.  If I’ve piqued your interest, you’ll just have to wait for publication.  Writing is my plan for exorcising them.

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

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

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
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.

Free fall

So, I took the plunge and started my new job.  I’m now an elementary school special education teacher in a 3-5 Autism classroom.  I know, right?  I have 27 years of teaching and social work under my belt.  I have dealt with nearly every special condition, trauma, behavioral set, and taught adults, preschoolers, high schoolers, but never, until now- elementary school children. It’s a foreign world and when I walk down the hall, I still don’t quite feel like I am in the right place.  These children are so little.  I have been teaching high school for almost 18 years, so when I walk down the hall I feel like Gulliver among the Lilliputians. I can’t tell you how it’s going yet, because I am still in free fall- I started January 12 by working to get my room ready for the children who would move down to a new room on January 21, but then Mother Nature intervened giving us a snow/ice day and making Jan. 20 a school day instead of a workday and voila, the children were to arrive a full day early. Egads!  I carried on though-night and day- to make it happen and I have now nine [9] school days under my belt with this group.  As I said, all in a rapid free fall of time that has been a virtual blur of learning names, IEPs, co-workers, & schedules, assessing skills and learning styles, dealing with behaviors surrounding new teacher/new room/new expectations, and finding one computer that will boot up and allow me to access CECAS, let alone project a video onto the front board.  I have three new IAs to orient and team build with who are looking at me like “how long will you actually stay,” but the school is top notch, small, community oriented, and every staff member looks happy to be there. I have had great support and I don’t have time to hurt at all.

My RA is not in remission.  I hurt, I just don’t realize it until the end of the day when I drag out to my car and when I sit down after supper.  You know it’s a lottery of sorts, so this week it’s been my wrists and hands.  Blessedly, the amount of standing and running and walking about that I do seems to be helping my feet and they are feeling okay right now- no bloody stumps.  I can’t open jars, pill bottles, yogurt packages, or milk cartons very well, and sometimes I have to ask for help, but I am super proud of the energy level I have had given three weeks of 12-14 hour workdays and maintaining both jobs.  Luckily I only had 2 plans this month and one revision for the Group Home.

I had to reapply for the state health plan, which sucks and is ridiculous since I only moved one county over and I am still a state teacher, but that meant moving my rheumatologist appointment forward and delaying further the introduction of biologics.  In my imagination, I will get better before the appointment when the Plaquenil finally kicks in and joins forces with the near max dose of Methotrexate to prompt remission, but I know that is not likely.  I am putting off biologics as long as I can since I am now working in a petri dish of germs with kids hacking and sneezing all over me all day long.  I’ve had my flu shot.  Next stop- shingles and pneumonia vaccines.

I have had some really cool stories to tell each evening.  I’ve had some glittery moments where I think I am exactly where I am supposed to be, but I have also had a couple mornings where I put the pillow over my head and didn’t want to get up and go back.  I’m energized when I am learning though, and I grow when I stretch and reach, so I know that’s happening-for sure.

2015

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

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

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.