Wherever We Go…

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I attended Back-to-School Night at my daughter’s high school last night.  It used to be my school, too; I taught English there for seven years. But last night I went simply as a mom. After almost two years, I’m ready to accept that it isn’t my place anymore.

Oh, sure. A friendly former colleague let me in the side door. And sure, I ended up chatting with most of the English department, at one point resting in someone’s classroom because my daughter’s daily trek, condensed into less than two hours, was too much for me.

And yes, I got hugs from teachers & students, a few of whom cornered me in the library, still sore about me leaving. I joked. I teased them and asked about their welfare. One kid said, “Same old Mrs. Landau,” and his friends nodded and laughed.

Years ago, someone remarked that my personality is the same in school, at home, at the supermarket… everywhere. My response? Of course!

Everywhere I go, I’m just me.

In any case, it was clear last night that I wasn’t “just” a random mom at that school; I’m still Mrs. Landau. And as of last week, I’m the notorious B-E-T-H.

Because Beth, I mean, I loudly react to certain things in our local newspaper, lately about a man who spouts bullshit and espouses bigotry and who is running for a seat on our local school board. A man who talks about starving the system without talking about learning. A man who says all sorts of inaccurate and misleading things year ’round that he keeps to himself when he’s running for school board.

And apparently I’m saying things other people wish they had the freedom to say. People who fear backlash if he does get on the board (*shudder*).

At the end of the night, I found myself semi-surrounded in the social studies wing answering the question: Wait–you’re the comment writer?

Yes. Yes I am, I admitted.  I think people in our district need to be reminded of this man’s school board intentions every time he gets a nonsensical and offensive editorial to print. Because that’s how it works. Now, November, next school year. Whenever and wherever he goes, he’s just him. That’s how it works.

They said, yessss! They said, you go, girl!

I said, I will, every time.Because I can. I don’t work here anymore, and I am not afraid.

Photosensitivity: It’s Not Just About Sunburn

I remember the first time sunlight landed me in the doctor’s office.

We were down the shore, in Wildwood Crest, NJ, and I’d spent a lovely morning on the beach. After a long school year, a dip in the freezing Atlantic and some basking in the sun felt just right, and I fell into a blissful semi-zoned state.

At lunch, back in our rental house, what looked like sunburn appeared on my arms, my chest, my legs. My face started burning, hot and itchy. Sunburn, I thought.

By late afternoon, the rash had spread to my abdomen, my back. Everywhere. It was swollen and hot. It hurt. I was exhausted and short of breath. My head ached.

Eventually, I found my way to a clinic where a young doctor told me I was having an allergic reaction to the sun. He put me on prednisone and suggested that I avoid the sun.

I sulked. In private, I cried. I felt lousy, and now I was supposed to stay out of the sun on the one beach trip of the year.

It happened the next year, too.

These experiences seemed weird and random until my lupus diagnosis a couple years ago. Photosensitivity is so much more than sunburn; the sun actually sends my body into an autoimmune tizzy, and it’s so common in lupus patients that it’s one of the diagnostic criteria.

So here it is, September, and I’m as pale as I was in April. I still crave that golden glow I used to get each summer, but I’m beginning to see my ghostly pallor as a sign that I’m doing what I need to do to protect myself from the sunlight-induced lupus flares.

I thought the following sites had some useful information about the real danger of photosensitivity and how to handle, as odd as it sounds, sunny days.

Lupus Foundation of America – Photosensitivity

Healthline – Lupus & Sun Exposure

A Call to Arms: Advance Notice to My Adrenal Glands

Prednisone tablets

Standing tall in fatigues and combat boots, my hair waving somehow gracefully in the wind as helicopter blades beat the air around me, I raise my megaphone:

Listen up, adrenal glands. I’m headed to NY to see my rheumatologist in a week, and we are sure to discuss prednisone. Yeah, that again.

We all know it’s poison and probably causing some of my symptoms at this point, so it seems likely that this visit will be followed by another attempt to kick the habit.

It’s only 5 mg a day, adrenals. The amount you’re supposed to be producing for me, remember?

You’ve been taking it easy, haven’t you? Coasting and letting that little white pill do your work. Well, it’s time to wake up.

Here’s what’s going to happen. I’m going to slowly taper my dose of prednisone–this is no shock and awe campaign–to give you time to wake up. And in response, you will cooperate.

Be forewarned. My doc says it’ll take a Herculean effort to get off these last 5 mg of prednisone because you’ve been slacking off for two years, but I’m ready to take you on.

This isn’t a skirmish, adrenals. I’m not going to give up when my temperature spikes and my hair starts falling out again. Or when rashes run amok on my skin. Or when you remind me how much I can hurt.

I’m going to eat right. I’m going to exercise. I’m going to stick to my other medication regimens. I’m going to support my body in a thousand ways until you wake up and do your job.

Do you hear me, adrenals?  This will be your only warning before I start dropping milligrams. Take heed.

The megaphone clicks off audibly, and I let it fall to my side. I survey my body, the battle ground, and nod.

About Strange Atheist Posts

Strange Atheist posts are about my logical and spiritual journey, which began in a Kosher Jewish home in NJ and continues in a traif Jewish-Atheist home in PA. It’s about having a brain that sees god as a social construct and a soul that’s a Jew through and through (and not just for the matzo balls). They’re about right and wrong and those pesky gray areas. I am including previous religion-related posts in this category.

Strange Atheist posts are NOT about dissing religion or atheism. It is possible to discuss spirituality, value systems, and good/evil without resorting to nastiness, sermonizing, or name calling. Neither is are Strange Atheist posts about discerning, once and for all, the Truth because that, dear reader, is a very personal destination.

Strange Atheist: The Beginning

This blog topic started with a tweet:

Rosh Hashanah, time to go to shul & sing prayers to a god I

see as a symbol & feel as my own soul.

I feel a blog coming on. #strangeatheist

7:55 AM – 5 Sep 13 ·

I’ve confused people by saying things like:

My brain is an atheist but my soul is a Jew.

By telling them I’m Jewish, behaving like a Jew, and then later revealing I’m atheist.

By being an atheist and wishing people success on their own religious and spiritual journeys.

And even by using the logic of their own faiths to comfort them.

Why? We are used to categorizing and labeling everything: our race, our sexuality, our political views,  our stance on whether Ryan Seacrest really works as the host of Dick Clark’s New Year’s Rockin’ Eve (I’m thinking no.).

But I believe that most things defy labels. Race, sexuality, political views, Ryan Seacrest-related beliefs… and religion.

I’m tired of confusing people and ready to start explaining. That’s what I’m going to explore here. I hope you’ll follow along and even join the discussion.

Do other creatures hurt?

I wrote a rant today in which I said terrible things: nasty comebacks to an ignorant, oft uttered comment and a whole hypothetical conversation, all designed to make people who’ve uttered such things feel small and ashamed and never say them again, not to me and not to anybody else.

Then, I read it to my husband, who laughed at the snarky bits and rubbed my knee when I cried because the whole of it is true, and I wondered if other creatures hurt when they release their venom, too, or if it is a relief to let it out. Or both.

“I’m going to read all my rants to you,” I said.

“Okay,” he replied.

And now, I don’t need to let it see the light of day.

 #friendship

Day 3 post-failed-#prednisone-taper:

Sometimes #lupus wins. 

Okay, fine. It’s not that my shoes all suddenly need to be broken in more. My feet are swollen. And fine, the needle on the scale continues to dip. And that pain in my fingers, in my muscles, in my skin, the type that makes me jump at the slightest touch–symptoms I haven’t had in a couple of months–they’re not flukes. They’re not because of allergies or paranoia or thesis-finishing-stress.

They’re because of the prednisone taper. Apparently the 1mg decrease that felt so tiny a few days ago is not so tiny to my body.  

It took fever to convince me. Not just any fever. The used-to-be-daily mid-afternoon low grade fever that settles in like weights in the back of my eyes, presses my shoulders, fogs up my brain and says, “Now would be a very good time to curl up and go to–zzzzzzzzzzzzzzz.” The one I’ve had for three days now.

I talked about prednisone withdrawal and the danger of rebound flares not long ago, still hoping against conflicting data that I’d escape them. I admit I was too disappointed to write about stopping the taper two days ago. Embarrassed, even. I hate losing to lupus.

A friend told me yesterday, “You lost a battle, not the war.” Of course, she’s right. The biggest loss here would be for me to start making decisions that were clearly not right for my body, like continuing the taper despite the increasing flare symptoms.

So, I’m spending more time in bed, passed out. I’m taking more fever and pain meds. I’m asking for and accepting more help around the house again. I’m hoping that popping back up to 5mg of prednisone will do the trick and my body will settle down again.

And I’m trying not to think of this as a failure, because there is one thing I know for sure: if you beat someone down, you’d better be prepared for them to get up fightin’ mad. And lupus, I may be down for the time being, but I’m getting up. You hear me? I’m getting up.

Day 29 of slowest #prednisone taper ever:

A note from my body: WHERE’S MY PREDNISONE? GIVE ME MY PREDNISONE.”  

4/30 Day 28 of slowest #prednisone taper ever:

Suddenly, a 1mg decrease doesn’t feel like progress.   

Of course, it is. It’s 20% less than I was taking a month ago. On days like these, I need to remind myself to look at the bigger picture. I’m not fighting lupus temporarily. I’m fighting it chronically. There is no quick fix. There is no fix at all. There’s only management.

The goal is minimization. Minimize flare duration and frequency. Minimize disease activity. Minimize symptoms. Minimize medications and their side effects.  Minimize fantasies about quick fixes.

Oh, and while I’m at it, I’ve got to minimize calendar reading errors. I’ve been off by a day for at least a week. I’m blaming it on my loopis stoopid, more commonly known as lupus brain fog. I’m trying to minimize that, too.

Day 22 of slowest #prednisone taper ever:

At this rate, I won’t be off prednisone until August.   

Day 21 of slowest #prednisone taper ever:

3 weeks! Down 20% from 5mg to 4mg. Get thee behind me, Satan!  

Perhaps you’re wondering why I’m being so public about trying to get off prednisone. What’s the big deal, anyway? It’s only 5mg a day. How bad can that be?

Well, it’s better than the 60 mg I was on in the spring of 2011. It’s better than the 20 mg I stayed on for several months that fall. And it’s better than the 10mg I was on for the next nine months or so. 

I’ve been on 5mg since then, and it’s helped my body stop fighting itself so much. 
That’s the good part. 

The bad part is that it’s poison, and long term, it is guaranteed to wreak havoc on my already havoc-ridden body.

Here’s how I explained it on my Women on the Verge blog:

In case you don’t know, prednisone is a steroid used to treat all manner of inflammation. It’s great for that. The problem is that it’s also poison. Besides causing insomnia, acne, and a host of other immediate side effects, it also does major damage to the body when used for long periods of time. 

And if your body gets used to it, it can be difficult to stop taking it; withdrawal is worse than the side effects, and it can trigger whatever chronic illness it is supposed to suppress. It’s a nasty ordeal.

Its an ordeal people with chronic illnesses and conditions go through frequently, one I’m going through now. After spending years on prednisone, I’m trying to get my body to kick the habit without triggering a lupus flare.

I began to post updates about my progress on Facebook and Twitter for two reasons. First, I have the most supportive network of family and friends, and if I’m battling anything, they’re on my side. Their kind comments and responses are encouraging. And the whole process is not time consuming for anyone. Second, it’s good for battlers of chronic illness to see that they are not alone. Our shared stories become their own type of encouragement.

Diatribes, however, are not just downers; they’re boring. So sticking to Twitter length updates helps me keep it short and semi-sweet. 

Thanks to those of you who follow along here on Nascent Niknud. I may expound a bit here on the blog, but if you want the quick version, it’ll always be the first 140ish characters on the top or on Twitter (@theblandau).

If you’ve got questions about any of this, simply leave a comment and I’ll get back to you.

And to those of you following because you’re on a similar journey: Stay strong and take care of you.




Day 20 of slowest #prednisone taper ever:

Moments of clarity are the foil to my usual loopis stoopid. Hello, me.   

Not sure what a foil is? It’s literary term time: 

FOIL: A character that serves by contrast to highlight or emphasize opposing traits in another character. For instance, in the film Chasing Amy, the character Silent Bob is a foil for his partner, Jay, who is loquacious and foul-mouthed. In Shakespeare’s Hamlet, Laertes the unthinking man of action is a foil to the intelligent but reluctant Hamlet. The angry hothead Hotspur in Henry IV, Part I, is the foil to the cool and calculating Prince Hal.

I love that explanation. Thanks to Dr. K. Wheeler. See it HERE

 

Day 18 of slowest #prednisone taper ever:

I want to say “more good days strung together” but I’m afraid to jinx it.  

4/17: Day 14 of the slowest #prednisone taper ever

Good day yesterday. Hitting the 2 week mark w/hope. 0.5 mg down, 4.5 to go. .

4/16: Day 13 of slowest #prednisone taper ever

Who cares? Have you seen the news lately? #youdontlooksick

4/13: Day 10 of slowest #prednisone taper ever

I’m running out of non-taper excuses. Maybe stress about taper itself? Reaching.

4/9: Day 6 of slowest #prednisone taper ever

Clear headed and closer to fine. Going with it.

Sunlight

Sunlight, my forsworn enemy, that of broken cells & autoantibodies, beckons. In sunblock & shade, I inch closer & bask in almost.

4/5: Day 2 of slowest #prednisone taper ever

Back up to 5 mg. Going to take a whole week to get used to 1/4 mg decrease.

4/3: Day 1 of slowest #prednisone taper ever:

Took 4.5 mg instead of usual 5 mg. Feeling stupidly jubilant.

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