Suleika Jaouad Understands Life with Lupus
People take cancer seriously. It’s a known entity. They know it is scary and can kill you and that it requires serious and on-going medical care. They have a general knowledge of symptoms and treatments and side effects and the havoc it wreaks on everything in your life.
And then there’s systemic lupus erythematosus, or lupus.
People don’t know lupus. Read More
Taper Town: A Daily Practice
It is early morning. The house is still. I stand in front of the French doors and view the backyard as I begin to move.
Wrists. Ankles. Neck. I sway back and forth, freeing my arms and legs from morning stiffness. Moving through the pain. The start of my daily practice.
Four months ago, I began my journey to Taper Town, the Herculean feat of reducing and stopping the daily dose of prednisone I take to help manage Systemic Lupus Erythematosus. Read More
Taper Town: Stuck Street
I’m stranded in Taper Town, stalled between well-enough-to-be-bothered-by-my-growing-to-do-list and in-too-much-pain-to-attack-it.
The street sign reads:
Up ahead, there’s an emergency box: Break glass for prednisone. Read More
Taper Town: The Blame Game
A to
mbstone bearing the epithet, “I told you I was sick,” was one of my grandfather’s favorite jokes. But this lament is no joke for people with autoimmune diseases.
Our lives are often riddled with odd symptoms and bandaid solutions. The thyroid guy doesn’t talk to the gynecologist. The gastroenterologist doesn’t always send notes to the family doctor. Doctors don’t believe our pain.
Then, like a blessing, we get sick enough to warrant diagnoses. Pieces of the puzzle click together. Read More
Taper Town: Take Two
At my last doctor’s appointment, my rheumatologist encouraged me to taper my 5mg/daily dose of prednisone… when I was ready.
“See if you can taper down to 4mg by the next time I see you,” she said.
“I don’t know if I’ll ever be ready,” I told her.
“It’s a trade-off,” she said. “You know the risks.”
I did. Even at such a low dose, I was having side effects. Shakiness and agitation. Insomnia. Muscle weakness. I knew it increased my chances of osteoporosis, especially because I already have osteopenia, its precursor. I knew the long-term effects [CLICK HERE to read about them]. But I wasn’t ready. Read More
What do you wish teachers knew about your chronic illness?
CALLING ALL CHRONICALLY ILL STUDENTS AND THEIR FAMILIES!
I was a high school English teacher before a severe lupus (a chronic autoimmune disease) flare took me down. Now I help students and their teachers understand each other and find useful strategies in the classroom.
If you are (or have) a student who deals with chronic illness, I want to hear from you!
Read More
Back-to-School with Chronic Illness
Everyone knows that a new school year means new notebooks, folders and pencils. Maybe even new back-to-school shoes or clothes!
Students with chronic illnesses and their parents know it means juggling their symptoms along with their work and social life. Read More
Taper Town: Don’t Know What You’ve Lost ‘Til It’s Back
I wake up curled around the pain.
Burning, it thrusts me from deep sleep into semi-consciousness, and I lie there panting, knees to abdomen, elbows to chest, face to fists. There is only pain.
I become aware of myself. Language seeps back into me. “Dying,” I think, and, a moment later, “Ulcer.” I uncurl and roll over, wincing, and drink deeply from my ever-present water bottle. The fire seems to spread, and even as I remember the antacids in my medicine cabinet, my body pulls me back into its protective curl and I obey, losing touch with everything but the bright and fiery pain. Read More
Taper Town: Initial Skirmish
Well, good. Who wants to read about an easy prednisone taper, anyway?
Hi, joint pain, muscle aches and stiffness. Remember that jet tub we had installed? That’s for you. It soothes peripheral neuropathy and the purple-white-red ache-numb-sting of Raynaud’s, too. And stress. Oh, yes. That bathroom remodel was worth every cent.
Heated floors. Good lord. Amen.
And welcome back, mid-afternoon blues, with your temp fluctuations, brain fog, and fatigue. And this inability to focus my eyes? Great excuse for a nap. My bed, my heating blanket beckon.
As for you, purpura, blooming bruises, hair fall and rashes, the canvas of my skin serves me, a message board. Show me what’s going on inside. Keep me posted sans pinpricks and vials of blood. There’s no unexpected news in you.
Bring it, body. I’m half a mg down, 4.5 more to go.
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Comments always welcome!
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Taper Town: Unpacking
As a nearly two-week resident of Taper Town, I feel confident saying that the move has been uneventful. And in any prednisone taper, uneventful equals successful. Specifically, I decreased my prednisone dosage from 5mg every day (5, 5, 5) to 4mg every third day (4, 5, 5), and I can’t tell if my body’s noticed.
Let me be clear: I have not been symptom-free. In fact, I’ve had periods of better health than I’m experiencing now. But Taper Town is not to blame.
An increase in lupus symptoms (and those in other chronic illnesses or pain syndromes) is common in the fall and continuing into winter months due to multiple factors, including excess sun over the summer. Even with enough sunscreen and protective clothing to keep any signs of tanning at bay, most people are simply outside more in the warm months. So the increase in pain and fatigue I experienced the two weeks prior to the beginning of the taper, when paired with blood test results that indicated only my usual, doctor-approved abnormalities, were not necessarily indicative of an impending flare. It was status quo on 5mg of prednisone and no reason to put off the taper.
So, I’ve got a regular lupie autumn going on. My joints are bitching, there’s more hair in my shower drain, and I’m seeking all things soft, warm, and cuddly. Opening jars and carrying heavy objects require the help of my family and friends. And it’s all manageable.
At 4, 5, 5, my dosage is down by only a third of a milligram, and I’m getting ready to take it down to a half-milligram decrease by switching to 4, 5, 4, 5 when I refill my little pill organizer in a couple of days.
Trouble may be on the horizon. It’s possible that my adrenal glands and I are in a honeymoon period. They might get restless when I’ve unpacked everything and the newness wears off. They might think we’re on vacation and get testy when they realize we’ve moved in. But I refuse waste time worrying about it unless it happens.
Now, it’s time to go downstairs for tai chi and some yoga stretches. We’re very vigilant about daily exercise practice here in Taper Town.
You’ll find some helpful tai chi links on my previous post, When Even Yoga Hurts: Tai Chi.
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Looking for more on this subject? The tags below or in the “cloud” to the right of this column will take you where you want to go.
When Even Yoga Hurts: Tai Chi
NOTE: Scroll down for a practical guide to starting tai chi.
I could say she was a terrible doctor, but that isn’t true.
I could say that she doesn’t care about treating the whole patient , but I really don’t know that.
I will say this: Her research protocol and my body were not a good match.
She’s a guru. People around the country try desperately to get in with her. Doctors around the world listen to her. Medicine she helped create helps thousands of lupus patients. Clearly, she was going to make me well, right?
Of course not. There is no making lupies well. There is only helping them control their symptoms. But I didn’t know that then.
I was a pathetic creature, that first visit. Holding paperwork and walking were struggles for my swollen, stinging hands and feet. My head was too heavy for my neck, my brain too foggy to grasp what she was about to tell me. I was an 8 or 9 on the pain scale (10 is the kind of pain that makes you beg for death, or at least unconsciousness). I was in no way ready to hear that she could do very little to help me.
But that’s what she told me. Rather, she told me my lupus was here to stay and I have fibromyalgia, for which there is no effective treatment, too. There was “no going back to normal.”
There would be no new drug therapy. Less prednisone and tai chi twice a day, she said. She handed me an article from the New England Journal of Medicine.
I could hardly move and she wanted me to take up a martial art. A slow one, but still. I couldn’t even do yoga at that time: everything hurt too much. Any pose that required putting pressure on any part of my body was impossible. Savasana hurt. That’s a particular level of pathetic.
My only other option was to do nothing, and that didn’t seem very proactive, so I did what I knew would never work: I started learning some basic tai chi moves. Scroll down to see exactly how I did it.
And my pain got better. Not gone, but better.
I still didn’t believe it was the tai chi. I got lazy. And my pain got worse. I started again and it improved a bit. My range of motion increased. My muscle tone improved. I had a little more energy. I was still a non-functioning mess, but I was a slightly improved non-functioning mess. Even this is success, sometimes.
After a year of ignored symptoms and no new drug therapies, I went back to my prior doctor, the one who had diagnosed me originally, the one who got me in with the guru, the one who’s four hours from my home (the guru was less than an hour away). It was she who finally treated me. It was she who determined I do not have fibromyalgia but some illusive inflammatory process that mimics fibromyalgia but responds to immunosuppressant therapy.
It turned out to be a good thing that tai chi was the only thing the guru prescribed. Perhaps I wouldn’t have tried or stuck with it if I’d had a new medication and high hopes. In the end, tai chi turned out to be the one gift she gave me, one I plan to take with me into any treatment plan.
Want to do what I did? Here’s everything you need:
- First, I did this (click image to go to the first of two videos). It convinced me that even someone as non-functioning as I was at the time could do SOME sort of tai chi.
- Next, I got this super easy to follow DVD (click the image to go to Amazon.com). I worked on this for a long time and recommend sticking with it until you have mastered every move and are both bored and ready for a more vigorous routine.
- Then, I moved on to this, a traditional series of only eight movements and accompanying footwork, a.k.a. an 8-form (click image to go to the YouTube video). This is still my go-to practice. I can do all the moves, and I know it by heart, so it travels with me everywhere.
- And when I’m feeling up to it, I work on this 16-form, performed by the same couple (click image to go to the YouTube video).
Good luck!
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Comments always welcome!
Looking for more on this subject? The tags below or in the “cloud” to the right of this column will take you where you want to go.
Taper Town: Move Day
Today’s the day: I’m moving to Taper Town.
Did you ever see a two-year-old go limp when his mom or dad tries to lead him by the hand? Neat trick. That’s what your adrenal glands, those lovely lumps of lymph tissue above your kidneys, do when you take presnisone. And just like you can’t really blame the limp two-year-old for his behavior (he’s TWO), we can’t really blame adrenal glands for sleeping while prednisone does their job for them.
One of the adrenal glands’ jobs is to make corticosteroid hormones that keep inflammatory responses from spiraling out of control. The amount they make is variable because they increase production in response to stress (illness, injury, emotional upheaval), but their normal daily output is very close to the equivalent of 5mg of prednisone daily, which is the dose at which I’ve been hovering for about a year.
It’s time to ditch the artificial stuff and all its side effects and let my adrenal glands wake up. Unfortunately, just as kids move from one phase to the next, my adrenal glands are going from limp toddlers to tired, cranky teenagers who don’t wake easily. As I lower my dose of prednisone, they’re going to be reluctant to switch from rest mode to response mode and make up the difference with natural cortisol.
This means I’m going to be cortisol deficient. It means my lupus will be stronger than my endocrine system again. It means that I can count on inflammation and the havoc it wreaks on my body. It means pain.
And that’s okay, I’ve decided. Some people are lucky in love; I’m lucky in lupus. I don’t have the life-threatening complications of many lupies. I can tolerate other immunosuppressant therapy. I have time to care for myself. My support system is superb (thank you, thank you, thank you). So, I’m moving to Taper Town.
There are no welcome mats here. It’s a tough neighborhood, resistant to gentrification. But I’m staying until my adrenal glands wake up and grow into productive members of society.
It’s Day One, and I’m taking 4mg every third day.
4-5-5, baby.
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Operation Adrenal Awakening: The Plan
18 September 2013, 09:00
War Room. I stand in a semi-darkened room, staring down at a large table littered with important documents. Lab reports, clinical research abstracts, and medical records. On my laptop screen, tabs open to Lupus.org, the Mayo Clinic, eMedicine, and Up-to-Date.
I pick up my iPhone, open my calendar, click on October 1st and thumb-type: Operation Adrenal Awakening: Commence.
It’s set, then.
Monday’s visit to the rheumatologist confirmed my suspicion that another attempt at tapering my prednisone dose is imminent.
My previous doctor operated solely in the realm of the cohort, of the scientific study and dealt only with numbered, data-producing bodies. She’d have said: I want you off prednisone by our next visit. She’d have told me when to decrease and by how much. She’d have told me I will have no problems with this. And if I reported any difficulty, she’d have told me I had no choice, no options.
My current doctor operates in the real world and deals with patients–actual people. She gave me no deadline, only a goal: Attempt to taper prednisone dosage until it is zero. She acknowledged the difficulty of this undertaking, and we agreed that any decrease is a positive change. “Experiment,” she said, “And see what works best for you. Go slowly.”
The last time I attempted to taper my prednisone, as chronicled in my Slowest Prednisone Taper Ever posts, I played with weekly half-milligram changes. This time, we’re looking big picture.
My current dose is 5 mg every day.
Starting October 1st, I’m going to take 4 mg every third day: 5, 5, 4, 5, 5, 4.
If, after a couple of weeks, there are no adverse effects, I’ll move to 4 mg every other day: 5, 4, 5, 4.
And if my body starts throwing its expected hissy-fit, I’m going to deal with it like one ought to deal with a child’s temper tantrum. I’m going to remain steady and wait until the fit is over, no matter how long it takes, because my adrenal glands are capable of the task. When they play fair and all is calm again, I will march forward with 5, 4, 5, 4, and eventually 5, 4, 4, and then 4 every day.
There will be no backward movement.
I will admit I’m uneasy about this commitment. The bravado from A Call to Arms: Advanced Notice to My Adrenal Glands has been weakened by a migraine that, in a matter of hours, reminded me just how badly I can hurt. It was the kind of pain that makes the 10 on the pain scale seem laughable. Hurts worst? How about: Makes you curl up in the dark with pillows over your head while you cry and wish only for unconsciousness.
Nevertheless, my plan is set.
Slowly, I’m going to make progress.
And slowly, I’m going to learn that even partial progress is a win.
Gathering papers into piles and closing my laptop, I straighten up my war room, satisfied with my pre-war progress. Fearful but resigned, I slide my iPhone into my back pocket, walk to the door, flip the switch, and step out into the light.
When Yoga Calls: Gentle Poses for Every (Dis)Ability Level
Yoga’s calling me today.
Non-yogis tend to see yoga as a soft exercise. A boring combination of stretching and breathing. You know – not a work out.
And it can be among the gentler types of exercise. Yogic philosophy stresses honoring the body, and types of yoga vary from restorative, which involves pillows, props, and lots of support, to vigorous and challenging asanas (poses), flows, and sequences.
But ever since my autoimmune system’s overrun my body, I have found that even gentle classes can be painful. On tough days, even standards like Adho Mukha Vṛkṣāsana (downward-facing dog) and Marjaryasana (cat pose) hurt my wrists and knees.
Luckily, there are resources that provide lists of poses for people of all levels of (dis)ability. The poses are hand-picked because they are easy on the joints and require entry-level balance and stamina.
Don’t be put off by labels. Yoga resources for people with disabilities are simply normal yoga poses that happen to be accessible to beginners and people with physical challenges. You’ll run into these poses during more strenuous practices, too.
Here’s the resource I’m using today:
Yoga Positions for People with Disabilities – WhatDisability.com, It lists poses that look easy on my ankles, knees, wrists, and hands, and I’ve done enough yoga to be able to follow along with written directions.
If you prefer to see someone model or lead you through gentle yoga poses, follow this video, which goes through 3 Hatha yoga poses that can be done by almost everyone. If you stay tuned after the initial video, you’ll find other yoga poses meant to help with specific problem areas & issues. Shout out to instructor Amy Newman for such a great resource.
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.
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.
Day 3 post-failed-#prednisone-taper:
Sometimes #lupus wins. #youdontlooksick
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.” #lupus #youdontlooksick
4/30 Day 28 of slowest #prednisone taper ever:
Suddenly, a 1mg decrease doesn’t feel like progress. #lupus #youdontlooksick #impatient
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. #notacompetition #lupus #youdontlooksick
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