Tag: rheumatoid arthritis

Update July 9, 2018

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This title sounds like a star date and that is about right.  It feels like light years since I wrote anything for this blog and it appears it has actually been two years since I made an entry.  Two incredibly busy years kept me from blogging… let’s see, I have been teaching 3-5 AU [which requires the energy of 3 or 4 people] and continuing to work part-time at the group home, dreaming of retirement and/or a time when I can read books again and maybe write books finally, living this crazy romantic life with Bean where I bridge two cities and live out of little bags that I schlep back and forth in my car, and dealing with a crazy woman who is the biological parent of Audrey and Rusty and this is an entire story unto itself, so yes, I’ve been a bit busy.

The crazy selfish bio parent has a weird and abusive older boyfriend who attacked Rusty multiple times, we didn’t know until the last when he made the North to Alaska call to his Dad in the moment.  Skip forward to weird Trumper-boyfriend signing a DVPO voluntarily to avoid having said children testify in court, Mom saying I’ll miss you guys and moving a city away to a smaller apartment and now only seeing one of the kids for a couple hours each week.  This all happened almost a year ago and the fallout has required me to step up and our relationship to change since the kids went from being around 14 of every 28 days to 28 of every 28 days and 24 hours of every day.  We are not complaining as they are better off in so many ways, but the disappointment that we all feel for this horrible woman and her terrible choices weighs like a heavy rock we all have our hands up in the air to collectively carry.  We are trying to find a big cliff to pitch it off and purge ourselves of the dark cloud of letdown and disbelief.

RA turned out was the moderate to severe and aggressive sort that only responded to a multimodal full on assault of Methotrexate, weekly instead of bi-weekly Humira injections, Plaquenil, and sometimes steroid bumps/tapers.  I have erosions in my hands and feet after only 4 years and my feet look different with weird nodules and bunions and daylight sign on middle toes.  I don’t think about RA as much, though, and it is now just part of the landscape of my life, in fact, I would have said I was in a good chemical remission, until late spring/early summer when the Vasculitis hit.  I developed petechiae on my feet, and since my sister just spent the better part of a year slaying this particular dragon, I knew what this might be.  A routine visit to my eye doc where they found hemorrhages on my retina and I knew for sure.  Now, we have to figure out how to proceed while I do daily steroid doses that are making me a bit moon-faced already.

I did get invited to go to Boston, though, to a Co-Creation Conference [which I don’t really know a lot about so far but will be going next week, so I will fill in the blanks then] to speak to medical professionals about my RA journey.  I am so glad that I had this blog, because I can literally go back and read about what it felt like when I was diagnosed and remember some of the things I have forgotten about what it was like when I was dying a bit every day from the pain and exhaustion.

And so, halfway through a wonderful summer break when I have time to actually write a paragraph, I have an all expenses paid solo trip to Boston to look forward to and a chance to share my story, and who doesn’t love a story more than me?

It’s a slippery slope… How I turned to the Autoimmune Protocol

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If you’ve ever stopped in to this blog before, you know that I frequently talk about what is ailing me or what new diet I [a] want to try or [b] am currently on.  When I look back or even think about its totality, I get it; it’s a rather self-absorbed rambling rant, but it’s not really for you, it’s for me…. to keep track of progress, major setbacks or victories, what’s working and what’s not working.  It’s only for you if you: share a problem, you stumble upon this blog, and we can help one another in any way.  That is why I share in a public forum.  I have gained so much knowledge and support through the Internet, I cannot imagine tackling a chronic illness without it.  I truly came into my own in my forties and I continue to grow wiser/calmer/happier in my fifties.  I was thrown a bit of hardball with the RA diagnosis, but what the heck, it made me forget about menopause. Menopause, smenopause, if I can thrive with Rheumatoid Arthritis, menopause is not even on the radar.

So, a couple of years ago, I lost almost 50 pounds and I was on top of the world.  Then someone stole my wings https://kimmstree.com/2014/06/07/maleficent/ and over the next couple of years, I slowly and painfully gained over half of it back.  It feels like more since I also lost some lean muscle as I could not walk/zumba/hike/run like I used to.  I cannot blame this all on the RA, making unhealthy food choices is a slippery slope that once you begin to slide down seems like a super slide with no stopping mechanism.  Sugar and simple carbs are poison to me; I know this.  When I eat them, I am medicating with food.  I have done this my entire life.  My Mother and Grandfather taught me.  Food was comfort, food was reward, food was a drug, and food was an ever present focus.

You cannot read about health issues or autoimmunity [I already have at least 2 autoimmune diseases], without learning that our gut is the new center of our health.  Hippocrates, was evidently, right all along when he said “all disease begins in the gut.”  Our microbiome is as messed up as our planet.  I discovered a couple of years ago that gluten and I didn’t get along and I cut it out. It was no picnic in the beginning, but I am used to it now.  I have become quite creative with alternative flours and grains, but I know that I am still allergic to something because of persistent rash on my thigh that reacts to my food intake by inflaming and healing in turns.  I suspect I may be sensitive to other grains, lignans, dairy, or eggs.

October is an auspicious month for me.  It’s my birth month and I have had two successful beginnings on October 6th. October 6, 1999, I stopped smoking and never looked back.  October 6, 2013, I began using Take Shape for Life/Medifast and lost almost 50 pounds in 5 short months. So, on Monday October 5th, I began the Autoimmune Protocol.  It basically removes anything that might be allergenic or that tends to promote leaky gut for at least 30 days- it is easier to say what I can eat than what I cannot.  I can eat fresh unprocessed meats, broths, vegetables that are non legume, and fruits that are non citrus.  I cannot have coffee, sugar of any kind, nuts, seeds, or grains, eggs, or dairy.  I am allowing myself only one grain and that is a bit of brown rice, and only if the brown rice is soaked, slow cooked in coconut oil, and then refrigerated for 8-12 hours.

I’m on day 5 and I feel more energized already.  Seriously, once the sugar is gone for a few days, it no longer has power over me and I feel back in control.  I’ll be writing this month to record how this elimination protocol is going and how I reintroduce foods.  If you have tried it yourself, I’d love to hear from you or get a link to your blog.

Humira Update

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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!

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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.

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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:

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I found this article today on rheumatoidarthritis.net 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.

Community Thoughts: What Do You Wish More People Knew About RA?

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.

the unexpected hazards of optimism

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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..

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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.

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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.

Free fall

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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.

How long do I have to wait for some biologics?

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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.  ❤