Category: Uncategorized

Update July 9, 2018

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?

Keep Calm and Use Some Love & Logic

HB2, otherwise known as the “Bathroom Bill” was proposed and quickly voted on and signed into law in a matter of hours about a month ago.  Many of us were confused from the git go.  I mean, it pretty much stands to reason that the men go in the men’s room and the women go in the women’s room, unless you have a child who is vulnerable due to age or disability and then you take them in your bathroom or the family bathroom.  I never much thought about whether there were transgendered persons in my bathroom.  There probably were times I used the ladies room with a person who was transgendered, but I didn’t know it. This was just never something I was spending much brain power on, but apparently our legislature was very bothered by it.  They tend to spend lots of time pondering how they can restrict, set rules about, and control the genitalia of the people of NC.

Since then, there has been a shit storm of backlash, and of course, it has been dichotomized by party.  I’m not going to rehash this, because unless you’ve been living under a rock or have been out of the country or taking a long FB break, you know what the backlash has consisted of on both sides.

I really try to stay out of it on FB.  I use some social media etiquette and I try very hard not to comment on others’ posts that I happen to disagree with, even those whose posts contain information I know to be patently false.  I don’t unfriend people for having views different than mine, although, that has happened to me quite a few times and fairly recently by someone whom I considered to be a friend. I try to remember that if I would not say something to someone’s face if I ran into them in the grocery, I shouldn’t write it on their wall/post or reply to their comment that way.

Don’t get me wrong, I believe that this legislation is a deplorable example of discrimination made legal by folks who don’t understand/are afraid of/hate/fear the LGBT community.  We provide diversity training now to social workers, educators, and health care providers.  I think it’s time our legislators got some of this training as well.

I wasn’t completely surprised at the NC legislators, they are primarily white males of a certain age, education, and religion and they tend to behave with a mob mentality governed by their demographic, but I was totally unprepared for the number of my friends who have come out in support of this legislation.  I get that they are buying into the “save our women and little girls” thing, but come on, is anyone thinking this thing through?   The facts about molestation do not validate this legislation.  The whole save our women and children argument also predicates on the assumption that the LGBT community is populated by child molesters and that is just insulting and uninformed. Come on, really?

90% of child sexual abuse victims know their abuser.  Maybe I should state this statistic again:  90% of child sexual abuse victims know their abuser.  The horrifying fact is that, given the statistics, at least a few of my Facebook friends [sadly maybe more] are likely to have a child or children who has/have recently been abused and they don’t even know it. This abuse was most likely perpetrated by someone they trusted.  This is what people should be up in arms about.  Let’s do something to lower this statistic.

There are over 42 million survivors of sexual abuse in this country.  These people know the truth.  This type of thing rarely happens in a public restroom, if ever.  If, it does, it’s most likely perpetrated a caregiver.

One of the best ways to protect children is to minimize opportunity.  That means limit times when your child is in isolated one-on-one situations with adults or other youth.  In my experience, most parents either go to the bathroom with their kids or wait outside the door.

What about your sons?  We are far more likely to read about men dressed like men who go into the men’s room and expose themselves to little boys or try to touch them.  Happens all the time.  There is a safeguard: it’s called supervision.

Trust me, I am as suspicious and on the look out for child molesters as you are, I just don’t assume that the LGBT community is posing a significant threat.  Ask my children, I gave them detailed and specific education and training on avoiding the threat of molestation.

I have friends who are posting stuff like:  “That’s what I’m worried about, some molester guy posing as a transgender person to get into the bathroom.”  Let’s walk this one through.  Let’s say there’s a guy who wants to molest a child.  Is dressing up like a woman to claim transgender privilege the easiest way to do this?  Unfortunately, there are many women out there more than willing to allow instant access to their children to boyfriends who they barely know.  Easy access to children happens every day outside of bathrooms and in the very homes of the victims.

People seem to have grave concerns about men coming in the ladies room or into the girl’s locker room without this law. I saw a meme of a girl’s locker room with a boy standing in his tightey whiteys while all the girls were in their underwear.  That is not even realistic. Here’s the deal.  If a transgendered person comes into the girls’ locker room or bathroom, it will be because she identifies as a female and she won’t stand out.  She will look like a girl and pee like a girl, and if she has a penis, she most likely will be keeping that under wraps.  She just wants to fit in.  If you don’t understand it, do some research, watch some movies, read a book.

And, seriously, I am still confused by it all.  Are people afraid that LGBT persons are more likely to offend? They are not- research confirms.  And, how in the world could this ever be managed and enforced?  Are we going to start doing panty checks?  What about men who look feminine and women who look kind of masculine?  I know women whose husbands look a little girly- what if someone pulls one of them out of the men’s room? Be careful what you wish for, people.

Target came out this week in opposition to the law and in support of the LGBT community saying their bathrooms will remain status quo, meaning, hey folks, you’ve been peeing with transgender folks all along and didn’t even know it.  Get over yourselves.  And, boom! More backlash from the FB community– people threatening boycotts now.  Well, by all means, take it to Wal-mart, home of the most normal and non-threatening shoppers on the planet.  LMAO.  I am sure this smarts for many, because, well, Target.

Finally, how many people think that criminals follow laws?  If there are molesters who want to dress up in opposite sex garb in order to infiltrate a forbidden bathroom and take liberties with some unsuspecting victim, are we to think that a new law will prevent this from happening?  Wow, just wow.

Sometimes, you have to look at the greater good.  Here, I think the greater good is just loving our fellow human beings, no matter their gender identity or sexual orientation and stop confusing differences in gender identity and sexual orientation with pedophilia or a propensity toward molestation.

It wasn’t broke.  It didn’t need fixing.  Laws should prevent discrimination not sanction it.

We are better than this.

 

 

 

 

 

So Lucky

I love my kids.  Not just my biological ones; the ones I see every day at school- my precious students.  Now, don’t get me wrong, we have our days, but they are what makes teaching in NC worth doing.  Yesterday, I woke up to stomach pain.  Not the run of the mill kind of stomach pain, but the kind that doubles you over.  I went to school because we had Special Olympics bowling and it was our last Friday outing to bowling.  I teach students with Autism but don’t try to tell me that children with Autism don’t have as much empathy, because they just knew… and they responded.  They were by turns kind and attentive and I was getting extra hugs.  A couple of them stayed closer than usual.  One noticed I was not my usual self and asked what was wrong. I was hurting, but also thinking about how lucky I am to have a job where I get to make a difference and I get back as much or more than I even give.

I have this one student who sometimes seems neglected.  She is so sweet and she tries so hard.  She is happy to be at school every day.  One of the biggest treats of my life has been when my preschool grandson runs into my arms when he sees me yelling “BB!!!”  Literally, the atoms fall out the bottom.  But I also get this from her.  Dalia [not her real name] runs off the bus to me each morning and hugs me.  Her face literally lights up to see me.  Doing what other job could I get this?

So today, I am feeling pretty lucky, blessed, and grateful.  I am thankful I am a teacher of students with Autism.  I am thankful for their love, their progress, and the stories and laughter they bring into my life.

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.

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.