Humira Update

I think I might be able to see remission at the end of this tunnel.  I still have some thumb pain and some ghost pains in my wrist, but my feet are easing up, as is my hip.  I’m at 20 mg of MTX weekly, 40 mg. Humira every 10 days, 400 mg. Plaquenil daily, and still hanging in with 5 mg. Prednisone a day.  The proof in the pudding will be when I can completely come off of the Prednisone.  I might have to go weekly on Humira to do that, though.

Humira is a weird drug.  I do sometimes have what I call the Humira hangover where I feel wiped out the day of or after an injection.  Sometimes it’ll be delayed a few days.  I also have strange ear fullness akin to pain and sore throat and some increased allergy like nasal symptoms.  I guess that is a small price to pay to be able to hold a cup again, get dressed, walk.

I was virtually pain free the week before school started again, but I guess stress really does exacerbate symptoms, so starting back to school has been a bit of a set back.  I am just trying to get enough sleep each night.  The extra exercise on school days is good though.  I walk 7500 steps just during a reg school day and it doesn’t take much extra to get 10,000.

I’d like to hear from you if you take Humira, and especially if you take it for RA.  Leave a comment about your experience.  Has it worked?  How long have you been on it?  Side effects?

PS:  I am starting year 19 of teaching Special Education and year 2 of teaching elementary Autism.  I love my class this year and I’m looking forward to a great year.

A teacher’s Summer and Yoga!

Summer.  Teachers live for it.  Don’t get me wrong- we are super excited in August stockpiling all those nifty school supplies and planning our room theme with the year stretching out like a ribbon of unexplored highway.  We come back and work day and night to get those rooms ready and greet those new little faces.  The air is ripe with possibility and we are the world’s optimists.  We work feverishly and we’re exhausted, but luckily there is a long weekend right around the corner.   Labor Day to Christmas flies by.  We return in January to a fragmented month banked by Christmas vacation and the MLK Jr long weekend, and before we know it, it’s February also known as the beginning of the wilderness. This time between Groundhog Day and Spring Break is where we begin to show a little wear and tear around the edges and we begin praying for snow days.  The weather channel becomes our favorite website or channel and we watch fervently for the southern storm which will give us an opportunity for a delay or even better a day in our jammies to catch our breath or catch up on our planning, grading, IEPs, laminating file folder activities or PECS, etc.  Spring Break dawns like an answered prayer and goes by in a flash and we return rested and ready to plow on toward summer.  By late May, we are shells of our former selves- veritable trolls who rarely clean house, eat right, or get enough sleep.  We dream about early retirement, but summer looms like a beckoning oasis in the harshest desert.

Every teacher knows that the first week or two off is just like the first pancake or two- right in the trash.  We go into a death spiral of languid escapes like sitting in our pajamas catching up on social media until we are suffering from the worst kind of inertia.  It happens effortlessly.  We think, wow, we have an entire summer to clean out the closets, list all that junk on ebay, plan and execute the perfect vacation, plan our entire next school year, catch up on all those doctor appts., read at least 10 books, go out to lunch with all our old friends we have ignored for another year, and go on cool day adventures with our kids or grandkids, and lose those stubborn pounds we put on this winter by working out.  One day, we come back reality and realize that we do not have three months off, that we barely have 10 weeks and oh how quickly that will go.  Then, a vacation or a project kicks us into gear, and before we know it, it’s the 4th of July.  That’s when the first alarm goes off, holy shit, my summer is almost half over and I haven’t even (well, you can fill the blank here).  Then there is that mid-point, where I find myself today, when another month of summer lies before me like a sparkling, shimmering pool.  Now, I will live more intentionally and savor each day, unwrapping it like a unique chocolate truffle, a new flavor and mouth feel each day.  This is strictly metaphorical since I am off the carbs again, but you get the idea.


This morning I decided to go to yoga class at an actual yoga center in a metropolitan area.  This is sort of where you would expect me to be, but then, not so much because while I have always gravitated toward the granola, I’ve never been inclined toward yoga.  As a younger woman, I didn’t get it.  How could all that standing and leaning over and lying down do anything for you?  Fast forward to that rocky precipice we call menopause and chronic illness [Rheumatoid Arthritis if you haven’t been reading this bitchfest of a blog], and you begin to “get it.”  So, yeah, I get it now.  I should have been eating better–from the years of Capt’n Crunch and Lucky Charms to the young woman stuffing Hershey bars and Kisses like somebody needed those wrappers back to the donut-loving, carb-worshipping. trainwreck who woke up one morning and could not walk on her broken little feet.  A body needs to move.  It doesn’t have to run marathons, although I’m not discounting those and one day I might get on that bandwagon, but right now, my joints need to be stroked out of their gel-lock by deliberate movement that elongates and opens all those chakras.

So, I studied the center’s menu and settled on a class for 50+ year olds.  I am only 51, but I thought, I might find a class of blue haired ladies I could keep up with.  I dug the yoga mat I purchased online 3 years ago out of my spare room closet and tossed it into the back of the car.  I put on my yoga pants, because we love those things whether we have ever taken a yoga class or not.  I’m sure you feel me here.  I donned a loose t-shirt and headed to class.  I had to park around back and walk around the two-story business complex, up a hill, and loop back around to the front where the yoga center is situated.  This 9:45 am walk was smack in the middle of my morning stiffness time and so I had several joints and tendons yelling at me as I climbed the hill in the hot morning sun.  My left hip was screaming, my right Achilles tendon was moaning, and my left foot [that feels like a bone might just poke on through at any moment] was whining as usual.  I thought, omg, what am I doing here?  I walked in to the center and was greeted by a kindly little woman with heavy rimmed glasses and salt and pepper hair pulled back into a perky pony tail.  She was wearing a cute little kimono-like top and some loose capris and she asked if I was the new sign up.  I said yes, and this would be my first real yoga class.  She was incredulous and asked what made me decide to come.  I said, because this was a 50 and over class and I was diagnosed with RA a year prior and thought this might help.  I knew from her bio that she too was an RA survivor and she quickly shared that remission came after she took up yoga more than 10 years ago.  I was in.

The yoga studio was quiet, with shiny blonde wood floors, windows looking out toward a wooded area across the highway, and colorless with gray walls and white trim.  The class participants were quite varied.  I chose to place my mat between a short, muscular, bald man of about 65 dressed totally in black and a plus sized woman of about 60 with a kind face and a graying pony tail.  I was the youngest in the room, but also the greenest.  I had to watch what other people were getting off the shelf.  Do I want the foam blocks, the blanket rug thing, the pillow bolster, or the bean baggie thing?  I had no idea, so I took one of everything.  I was way in the back of a room with about 15 or more mostly women, but there were two quite dignified looking men.  Everyone sat criss-cross applesauce waiting for the class to begin with their hand palms up on their knees.  I had to strain to keep my back straightened as it wanted to fall into the slouchy “c” of the computer user.  Keeping my spine in a straight line was an exercise unto itself and my hips, especially left, were dying in this position.

We began with a melodic group Om and then went straight into child position where, with my head down, forehead to mat, I could not see what I was supposed to be doing, and as I am auditory learning challenged [this gives me tons of empathy for my students who are primarily visual learners], I had no idea what I was supposed to be doing down here.  My ass was indeed in the air though, flailing about, and I had to concentrate on keeping those straight line.  At one point, I sort of laid my cheek on the mat and fell into a private giggle about this particular quandary I was in.  Later, on our feet, we entered the warrior pose– now I was made for this pose.  The teacher said, “I could see your face become warrior like as you entered this pose.”  I enjoyed lunging and back bending in the warrior until a wave of nausea came over me.  It’s warm in the yoga room and I had only had a bit of cheese and half apple for breakfast, luckily, or I think I would have up-chucked onto that shiny light wood floor.  I had to leave to go out and get my bottle of water and take a sip and make sure I was not going to actually vomit.  False alarm, but strong evidence that, yeah, yoga does stimulate the organs and get that digestive train rolling out.  By the time we arrived at the part where we got to loll about on the bolster pillow on the floor and meditate, I was all in.

In the end, I felt better than when arrived, and that was enough proof that this was where I needed to be.  I plan to go back and am excited about the possibility of attending a restorative yoga class where you get over an hour of all floor pillow-hugging stretches and meditations.  Apparently a guy named Steve teaches that class and his voice is quite soothing.  I will leave you with a video I found.  I am not a skinny girl. I have never been the long lean willow of a woman.  Even at my tiniest, I always had curves.  Currently, I am between a size 12 and 14, so I am not particularly over-sized, but neither am a I what you typically envision when you see the yoga devotee.  This video made me laugh out loud– lots of good tips :).

Fat Girl’s Guide to Yoga

Namaste’ [Yeah, I think I’ll stay]

What I wish people knew about RA:

I found this article today on and overwhelmingly, these things ring so true.  I decided to make my own list.  Hopefully, if you love someone who has RA, you will take the time to read this list.

My list:

1.  My sister was dx with RA 10 years or so before me.  I thought I understood.  I had NO IDEA.

2.  I don’t know what it is like any longer not to hurt somewhere.

3.  I get really tired of compensating and asking for help at times like when my hands just won’t work.

4.  I’m pretty much tired all the time.

5.  There’s a world of pain and fatigue behind this smile.

6.  I have always taken pride in being strong and independent; this disease tries every day to take that from me.

7.  I feel like I am battling a monster every single day.

8.  I get it- you don’t understand, and even when you try, you still don’t really understand.

9.  It never goes away.  I don’t get to look forward to a cure.  All I can hope for is chemical remission where the drugs that put me there could also take me out in any number of other ways.

10.  I feel like I have aged 5-10 years in the 15 months since my diagnosis.  This frightens me.  Sometimes I just cry.

So, wow.  This list makes me sound really self-centered- it’s all “I, I, I, and I.”  That’s another thing this disease does.  It makes you feel self-absorbed and whiny.  That is so far from who I think I am.

The most important thing for you to know, though, is this:

I have RA, but it does not have me.  I will not stop fighting.  

Gifts RA has given me:

1.  I live in the moment a little more.

2.  I have more compassion for people who live with chronic pain… for people in general.

3.  I think I am kinder and gentler on the daily.

4.  I have let go of all the anger I used to hold on to, which could have contributed to the firing up this disease/state of inflammation.

5.  I practice mindfulness and forgiveness more often.

So, as always, with loss, there are gains.  I imagine I will find more gifts as I go along.  ~Peace.

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:


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.


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.