Riverbend and Early Rising

It is the end of Riverbend Festival week in Chattanooga.  The festival lasts 10 days, and attracts tens of thousands to its varied musical performances.  Even in years when I choose to avoid the heat and crowds, I can feel the excitement in the air.  Traffic patterns change, new faces appear in familiar places, television coverage and personal reports abound.  

My daughter made her first appearance at the festival at age three, dancing in the street with the community at the Bessie Smith Strut.  She still attends regularly, and I eagerly await her reports.  Last night we stayed up until 3 a.m. talking about the events of the week, the excitement still present.  She showed me her loot from the last night:  a necklace with a real scorpion embedded in glass, a six-pack of Coke Zero, jeans purchased in her pre-concert shopping.  Her descriptions of the Little Richard concert, with his unexpected presentation of his young nieces and nephew-tiny children standing on his piano to sing Itsy Bitsy Spider-kept me spellbound.  Attendance by proxy, as dictated by the current state of my lupus. 

In spite of the late late bedtime, I rose early to appreciate the glorious, bright day.  I have always been an early riser, eagerly waiting for morning to come, happy for summer when it is marked by bright light streaming into my bedroom.  As a child, I felt that I was missing something if I lay in bed late.  It was intolerable to hear activity in the rest of the house and not be a part of it.  Now, when the agenda of the day is dictated by me, I still feel the urge to jump into the day early.  I come by this honestly.  My father always rose early, his farm upbringing and Army career reinforcing the habit.  As an infant and small child, I woke to be with him and start the day. 

My son appeared unexpectedly at the front door yesterday.  He rang the bell and I interrupted a phone conversation to answer it.  My shrieks of pleasure greeting Julian probably frightened my friend on the phone.  A nice long spell of catch-up conversation ensued.  Meanwhile, a knitting friend showed up for an extended visit.  We began the evening with conversation, ended with pizza and a viewing of The Secret Life of Bees. 

So much to awake to, so many reasons to get out of bed.  That’s a good life.

Peace.

Pick Up the Phone

Just when I thought my biggest worry today would be the aches and pains from yesterday’s cleaning, there’s more news from the Senate’s health care struggles. 

A majority of Americans support having a public plan available for folks who cannot get health care insurance through their employers and who cannot afford to buy it on the private market.  There’s a movement in the Senate to delay this, giving private insurance companies more time and options to deal with the problem, and only allowing a public plan at some fututre time if they should fail.  The private insurers have already shown us that profit is their whole motive.  They have done everything they can to deny insurance to people and to not pay for what their insured customers need.  Why should they have another chance at our expense? 

What can we do?  We can get on the phone and call our senators’ offices, telling them that we don’t want to delay a public plan, that we need it now.  It takes 5 minutes to pick up the phone and relay that message.  You can read about it here:  http://www.healthcareforamericanow.org/.  I’ve already called Senator Alexander and Senator Corker to register my request.  If we don’t have health care for everyone in 2011, I don’t want to be kicking myself for lack of action.   

Now I’ve gotta get back to cleaning.  Someone else is scheduled to see my house.  Sell, 7514 Tranquility, sell! 

Peace.

My Sister Was Here – Hallelujah!

In my April 6 post, I talked about looking for infections.  If I believed strongly in jinxing myself, I would be freaked out, because on April 7 I had to start antibiotics for strep throat.  I have a swollen, red tonsil with a pocket of icky white stuff that isn’t better yet.  I emphasized vigilance about infections because prednisone masks the symptoms and they tend to progress further before we notice them.  I haven’t had fever or intense pain, which would have been guaranteed without the prednisone, but the flip side is this prolonged course. 

I mentioned my elf.  She had to remain anonymous until she announced her presence to the local family, but it was my youngest sister, in from Minneapolis.  It was the first time we pulled such a prank, keeping her visit plans a secret, and also the first time she stayed at my house instead of in town with the parents.  We had a wonderful time, from the delicious secret plans to our conversation on the way to her departure shuttle.  Who knew that highly different, feuding childhood sibs could turn out to be such close friends? 

Who knew that she was coming to take care of my house and shorten my prep for putting it on the market?  It was her spring break, and I anticipated sitting on the deck with a beverage and chatting about life.  Hah!  Her plan was to whiz through my house, throwing away things, packing others in the pod, and rearranging the remainders into a fashionable showplace.  I had to help, instead of putting my feet up and nursing my sore throat.  Claiming that she “loves” organizing, she went through yarn, books, and clothes with equal fervor, shaking her head at what I’ve accumulated and moved around over the past twenty years.  She cleaned my carpets.  By the time she left, I was out of ways to say “thank you”.  Maybe I can knit her a car. 

We took time off to make two visits to the parents.  They were thrilled to see my sister and overjoyed that she brought her animal, a blue pomeranian, with her.  Nothing makes them happier than dog visits.  Mitchell tipped around their house, leading Daddy with his leash.  He sat in Mama’s lap for a restless moment, letting her hug him and play with his abundant hair.  The second visit had to be short because they were preparing to pick up friends and go to Olive Garden.  We asked if there was a special occasion.  My dad said “No, this is what we do,” as if outlining their busy social schedule.  Chief Sister in Charge of Parent Care has done a wonderful job of making recreation for them. 

I didn’t forget my instructions when my sister left yesterday.  I continued clearing out my room today, and changed the old, dark curtains to light, neutral, crowd-pleasing ones.  I put away-or discarded-a boxful of things that I couldn’t live without last year.  Things lose their appeal so quickly.  I should confine my purchases to books, music and craft supplies. 

Oh heck, 1 a.m. and I haven’t taken the bedtime dose of antibiotics.  At this rate, my tonsil will just die and fall off. 

Peace.

Diva Day, Hopefully to Be Continued

I woke this morning with a lightness, waving my feet in the air, laughing loudly to myself.  There was dancing in every movement, and I smiled to me in the mirror.  The energy today was all about hope and the expectation of good, maybe good beyond anything I deserve or claim. 

Midday, I tried on new clothes, things that arrived in the mail, ordered on line, my favorite shopping method.  I am back down to the sizes of my favorite store, and I waltzed around in a flirty skirt feeling like a million.  Losing a couple of dress sizes can revive you.  Knowing that it happened logically and by my effort, rather than through some random occurrence, is my assurance of further success. 

I called my 93 year-old aunt and caught up, including telling her of my recent weight loss.  Always one to stay small and fit, she told me her own story of a stint with Weight Watchers in their early years.  She quit the program because they required you to sing your weight to the group, and she’d never been a singer.  Indeed, as a child she had been kept after school by a disbelieving music teacher who insisted she try harder to make melodious sounds.  She laughed as hard as I did, the chuckles ringing in her whisky voice, the one I’d always envied. 

Later, I shopped at the little vegetarian market, driving home with my tofu and carrot-ginger soup (mmm, more curry), ignoring the meaty smells from the barbecue joint by the road.  By the time I put away groceries, and rescued my dog from her imprisonment in the sleeve of my jacket, I had to sit and rest.  That didn’t end my day.  After dozens of photos I was able to post the wrist cuffs and bag that now open my store. 

I hate getting philosophy from a television narrator, but the Grey’s Anatomy wrap-up had it right tonight.  Trauma always does leave scars, and for some of us, it also makes us continue forward.  Or are we moving in spite of the scars?  I don’t know.  Today I only experienced the movement, and I felt like a diva.

Peace.

The PNHP Health Care Recommendation

I had planned to post a drive-by this week with the text of Dr. Fein’s presentation to the President’s health care forum.  I am a member of Physicians for a National Health Program, which advocates health care for every American, with an economical, single-payer base.  Having worked in the public and private sectors caring for patients, and looking at the built-in problems of our current system, I feel very strongly that this is the best solution. 

 

Please read and consider this statement, prepared by Dr. Oliver Fein of the Physicians for a National Health Plan:  http://tinyurl.com/b2udj7.

I had to revise my previous draft of this post, as the prepared statement didn’t print out properly and I was clueless as to how to fix it.  On another day I might have figured it out, but I feel a bit slow today.  My thoughts seem to require a bit more concentration and focus than usual.  I have an infection that just cropped up, and my general symptoms are pointing towards impending flare, so I am not surprised.  I spoke with one sister on the phone for a while and seemed to have word-finding trouble every few minutes.  How convenient that my child is home for spring break, here to fill in the blanks.

From time to time I get feedback on my blog in forms other than the comments printed here.  As much as anything, they encourage me to keep writing.  I’d just like to acknowledge them as a group, thank those kind folks who say that my writing informs, entertains, encourages, or comforts them.  As a doctor, I always knew that my work had value, that I did some good for the people in my care.  One of the worst consequences of disability is the feeling that you may not be useful anymore.  The first few years after I stopped practicing medicine, I had to learn a lot about my place in the universe and what value I had that was separate from my physical abilities.  That’s a whole ‘nother post. 

I’ve been doing more than just contemplating.  The organic cotton summer scarf is finished but not photographed.  I began a wide, brightly coloured, loosely crocheted scarf from gorgeous rayon yard yesterday.  I’ve got a sample in progress that is moving along well.  In between, the sorting and consolidating continues.  I made an extensive list of items that must be completed to get my house ready to show-20 items!  Yes, big number, but I feel better seeing it all laid out in front of me. 

Overall, I have a wide path ahead and I can see my way clearly, which is a lot more than I can say about some portions of my life. 

Peace.

The Eyes (Don’t) Have It!!

This will be brief because I’m typing with one eye dilated and I might be missing errors that will land me in jail for slander or salaciousness or worse.  However, I could not wait to tell my news!  My eyes are fine!!!  No bleed, no retinal tear, just normal vitreous jellly breaking loose and making those little floaters, probably more than usual because of my extreme near-sightedness (near-sighted means longer eyeball and more tension on the walls where the retina attaches and the vitreous is anchored and…oh hell, my eyes are fine!).  I asked Steve if I’m coming in for silly stuff and he assured me that my concerns were justified and that I should come in for any worsening of these symptoms.  Yay, I’m not no stinkin’ eyepochondriac! 

 

That’s good news number one.  Number two is that yesterday morning I got a hankering to dive into my bedroom trash can to search for my camera, and while I felt foolish digging through the trash, I did find it!  Go figure.  It either jumped off the bed into the can or I absent-mindedly dumped it there with a load of discarded mail.  I’d like to label everything I own with some responsive material that would make it clang or beep or light up when I pushed a button, Mary, but it would sound like the cast of Stomp.  I misplace things regularly.  Usually when I’m putting them in a safe place that I will remember forever. 

 

Number three good news is that I increased my prednisone back to my 10 mg baseline, and I got up feeling good today.  I’m going to finish the baby hat I’m working on, start my load of turtles, and work on another project that has a deadline.  I don’t have to stop for cooking, I’ve got leftover tofu/cabbage/mushroom/onion sautee and simmer in my refrigerator. 

 

Oh yeah, one caution.  I mentioned the Lion Brand Recycled Cotton.  I will think twice about buying any more of it.  I am halfway through a skein and so far I’ve had about eight separate pieces of varying lengths.  They should have warned me!!!  I like how the yarn knits, and my toddler hat is adorable (I’ll show when it’s finished), but I’m gonna be weaving ends forever.

 

Someone put me in an awesome treasury last night.  I’m honored to be in that particular company – some very creative designers there.  You can see here: 

http://www.etsy.com/treasury_list_west.php?room_id=42083.  It will be up for two days. 

 

Peace.

Another Saturday, Not As Mellow

I’m on the downslope!  This is perhaps my favorite time in the disease cycle of lupus.  I’m over a major flare, my energy is improving daily, and I’m able to increase my activity.  I feel like I’ve been released from prison after several months of false accusations and physical torture.  I have to survey the wreckage and handle it, but anything is better than the previous confinement.

 

The “wreckage” consists of all the things that I’ve missed or put off due to the flare.  Sometimes it’s more emotional, other times it is primarily physical.  Among the emotional issues this time is the separation from familly and friends.  I am so grateful to those that sought me out, came to my home during the worst of the flare, and weren’t put off by my inability to get out and meet.  I’ve missed seeing my little old parents, who rarely leave home for anything but doctor visits.  Physical consequences have been pretty large, too.  My house is cluttered and messy.  My organizing of the craft room stopped mid-stroke.  I didn’t finish my yarn de-stashing, and there’s at least one more box to go to the prison yarn project.

 

I wrote the paragraphs above at the beginning of the week.  Now it’s Saturday, and I have not taken the week as I should have.  With all the energy and emotion of my new freedom, I jumped into moving my daughter into her new apartment.  I shopped too much, walked too far, carried too many items…there was no moderation.  By Thursday I was wondering if I would have to stop in the aisle at Target and sit down on the floor.  My back and knees were dying.  I made my last purchase, got in my car, and vowed to sit out the next few days. 

 

My idiocy was compounded by the fact that I landed in a hotel that didn’t provide the accommodations and service that they have in the past.  My room was persistently hot (in a town that has been 90 degrees every day), I had to fuss to get my room cleaned, and there was an infestation of ycky little black crawlers.  I’d been there a dozen times and never had that experience.  I complained mightily, got a night comped, and moved to another hotel. 

 

Sometimes this lupus provides me with more challenges than I want to think about, but I have to sit still and think them through in order to handle them.  Right now, I’m noticing that the tiniest activity makes me sweat.  I am so out of condition that my body thinks it is running laps when I’m just pushing a cart slowly through the grocery store.  At the same time, I am holding onto fluid like a champ, with the swollen ankles and legs demanding a diuretic.  I’ve concluded that I have to moderate my activity, watch the unaccustomed salt intake (hey, I can’t cook here), and get some real sleep.  The chores of my trip are over…I can do this. 

 

I have been knitting all along, of course.  I completed the little girl sweater.  I love it.  You can judge for yourself:

Starting from the top, you see the whole front view, then a front placket detail, then sleeve detail, then the back view.  It is ready to mail.  I hope I’ll get a photo of the little girl who requested the pink and white, three-quarter sleeve, girly cardigan.  I always aim for one size larger for children.  That gives one year with a sweater or heavy shirt underneath, then one season of lighter coverage, and if we’re lucky, an additional season where the cardi can be worn as a top alone.  I now sympathize with my mom, who made those over-size, you’ll-grow-into-it calculations for six daughters.  An expensive piece should last more than a minute.

 

I remembered to photograph my girls when they were all together:

There they are-my daughter in the middle, with her sister and her niece.  The most beautifulest! 

 

Peace.

Answers About Lupus Treatment

I put myself on the hot seat by divulging that I am both patient and physician.  I am not surprised that hard questions result from that.  I don’t mind moving from the exam table to the doc’s stool and answering whatever people ask, as long as it doesn’t constitute giving individual medical advice.  I cannot be a physician to anyone over the internet.  The following discussion refers to comments on the Treating Lupus: A Physician-Patient Perspective « Essiewb’s Weblog, published July 18, 2008. 

Regarding the diagnosis of lupus:  There is no organized external pressure for doctors to make fewer diagnoses of lupus.  There is always, from the time you enter medical school, pressure to make the correct diagnosis.  That means, for an honest, conscientious doc, if lupus was diagnosed without adequate criteria, or with incorrect interpretation of physical signs, continuing to seek the proper explanation for the patient’s illness.  There are more than 100 autoimmune disorders, and some closely resemble each other.  As we learn more about them, it is easier to distinguish one from another.  There are other rheumatic disorders, such as *fibromyalgia, which are not autoimmune but have symptoms similar to the autoimmune or collagen vascular disorders.   Most of us are aware that sometimes the most basic blood test for lupus can be positive, even when the disease does not exist.  That also provides a diagnostic challenge. 

From both the patient and physician standpoint, I have to ask, why would anyone resist having a more accurate diagnosis?  and, why would anyone want a diagnosis of lupus if they didn’t really have it?  I realize that uncertainty is difficult to live with, and sometimes it seems that having a bad diagnosis is better than no explanation at all, but we can’t welcome a wrong diagnosis and resent having it removed.  It serves no good purpose.

Next, regarding treatment for lupus: There are some things that are pretty much written in stone, that won’t vary from physician to physician or patient to patient.  Acute flares of a certain severity get high doses of corticosteroids like prednisone,  blood clots get anticoagulants like warfarin, and so forth.  The rest of treatment is something of an art and a judgment call for every decision. 

I have to emphasize that we are talking a LOT of decisions here:  To hospitalize or not.  Which blood pressure medicine to use, and how much.  To use anxiety medicine or not, and how much and how often.  To add another disease-modifying agent, and when, and how much, and how to monitor the drug’s effectiveness and/or side effects.  To stop other medications when the prednisone is increased or not.  To relieve the edema with a medication or to request bed rest with foot elevation and see how well the kidneys handle it.  That’s just for starters.

That doesn’t include the patient-centered decisions:  The crux of these is how well I know the patient.  Can I trust this patient with anti-anxietal medication or narcotic pain medicine.  Will starting these too early encourage the patient to neglect other personal resources for handling stress and pain.  Is this a patient who will follow a low-salt diet to help their blood pressure and edema.   Is this a patient who will contact me if there’s a medication problem or new symptom, or is this someone who only calls when there’s a complete crisis and things are out of hand.

You’ve probably noticed that your doctor uses a certain amount of triage with your problems.  Life-threatening stuff is always first:  make sure you know what you’re treating, and treat it in a way to keep your patient from dying.  Fine-tuning comes later.  Because we feel very strongly the responsibility for the life-threatening stuff, we can react very strongly when someone seems to question the use of our key weapons in the arsenal against the disease.  That can lead to some earnest preaching and nagging about taking corticosteroids and other disease-modifying drugs. 

Docs differ in style.  Our personalities and histories are an integral part of our relationship with patients.  The common denominators are a helluva lot of education and a sincere desire for you to be healthy.  That makes it hard when you compare one person’s treatment with another.  Conversation-not confrontation-can go a long way to clearing the air and getting answers with your own personal doc. 

 

Peace. 

 

*My personal feeling is that WeAreLupus.com should not be a dual site with fibro-the causes, treatments, and prognosis of these two diseases are completely different.  The fact that many people suffer from both doesn’t make them similar.  I think it encourages fibro sufferers to look at their disease in a more pessimistic fashion; the fact is, fibro is not life-threatening and lupus is.  In general, medications used for lupus have more potential long-term consequences than medications used for fibro.  These populations are not the same.

Prednisone and Optimism and a Whole Lotta Talk

I’ve been taking a break.  I didn’t plan it.  It started with the rib attack, which is still hanging on a little bit.  I had to double my prednisone, and that produced restlessness.  Instead of being able to sit nicely at my computer and type, I was reduced to knitting frantically, hour after hour, while I watched television.  This was good for my niece’s blanket, where I’m on the third strip of rectangles.  Not so good for blogging. 

 

In this state, I don’t forget about writing.  On the contrary, I write whole essays in my head while I bathe, knit, eat, and probably in the little bit of sleep that I’m getting.  For instance, I was bathing today and I thought about my sister’s new hairdo.  She has it done up all over her head in little twisties.  As it grows out, she sees a stylist who twists them more, including the new growth.  In my bath, there was this conversation:

“These are twist-es, not dreds.  They not the same, you know.” 

“And how I’m s’posed to know that?  What class I take teach me about twist-es and dreds?”

No, this conversation didn’t really take place, and if it had, it would have been in our usual impeccable English (only laughing a little, folks; I am such an intellectual snob).  But I was imagining right along, seeing us sitting together in Atlanta, intent on discussing the hair. 

 

Yesterday, I wrote a whole post in my head, explaining the why and wherefore of getting fed up with being chronically ill.  It went something like this:

I’ve been sick for 16 years.  It’s not exactly the being sick that gets me; I can deal with personal illness.  My sickness comes in distinct episodes that really mess up my body (memory, strength, endurance) and my household (bills, clutter, deferred maintenance).  After each episode, I have to work triple-hard to try and get back to where I was.  I never quite make it back to the pre-flare level, resulting in a slow decline over time.  Whatever improvement I made is wiped out by the next flare.

What I’m defining is a sure path to hopelessness.  Or so I was thinking.  At some point, I began to see myself as hopeless and to see my efforts as useless.  I was living with acceptance of that verdict, which I had given to myself.  And…living with that reality, a conclusion in a situation that was still evolving, made me accept resignation as my position. 

I’m of the “change your mind, change your life” belief.  Now that I realize that I chose resignation, I’ve moved 180 degrees in my mind.  I can already see the difference.  I’m not “doing” anything but changing the mindset.  I know change will follow.

Now, here’s the amazing part.  I went for chemo recently, my fabulous B cell-killing treatment.  The doctor told me that from here on, we will schedule the treatments closer together, so that we will keep my B-cells from coming back enough to produce flares.  Imagine!!!  Lupus without flares.  An opportunity to stay well, to improve and have a course that is steadily better instead of the Sisyphus life I’ve been living.  Ironic that I had changed my mind before I even realized this was an option.  I had not even asked the question.  Hello, it takes optimism to ask positive questions.  When I was being resigned, I expected to hear negative answers, so I didn’t think to ask. 

Whew.  I think too much when my dose goes up.  This was actually about a two-hour process, writing the post in my head.  I left out a few words.  I could elaborate ad infinitum.  I won’t let me be that mean. 

 

I did something fun this week.  I committed to something in advance.  The Children’s International Summer Villages is at the end of their village in Chattanooga, and they needed volunteers to provide vegetarian meals.  Three days ago, I signed on to bring a meal without worrying about how I was feeling or how the cooking would get done.  I knew we’d do it.  It was a family task.  Dayna suggested the main dish and washed dishes.  Chris prepared the vinaigrette from his own recipe and delivered the food.  I made the eggplant and broccoli pasta salad and baked a blueberry bread.  Of course there was enough for the family.  One thing the prednisone doesn’t give me a problem with is eating. 

 

Peace.

Treating Lupus: A Physician-Patient Perspective

Yesterday I joined a new group:  We Are Lupus, at www.wearelupus.org.  It is made up of a few hundred people, mostly lupus patients, but also patients with some related disorders, and family members and friends of patients.   It promises to be a good forum.  It’s always good to have the company and wisdom of other people who share your experience.  I’m not really a support group person.  I don’t want to put it in my schedule, and I don’t want my local friendship base to be built around a disease, but I do like having folks to talk to online.  Lupus can be very isolating (like many chronic illnesses), and the online connection is invaluable.

 

Seeing so many people with their descriptions of illness and treatment made me interested in reviewing my treatment philosophy regarding lupus.  Here goes!

First, do no harm.  Straight from the Hippocratic Oath that we all take when we graduate from medical school, these words should underlie the therapy for every illness.  Unfortunately, all treatments-herbal, behavioural, surgical, prescribed medicines-have possible side effects and undesired consequences.  That means we have to keep in mind the balance between possible bad effects and the potential for doing good, and also (less frequently considered), the balance between possible bad effects and the consequences of not treating at all. 

In lupus, there’s rarely a situation where not treating at all is acceptable.  Lupus is a disease where the body’s immune system sets up powerful inflammatory responses against our own tissues.  Inflammation has consequences.  The short-term consequences are pain, stiffness, swelling, fatigue-things all lupus patients are familiar with.  The long-term consequences are silent but deadlier-blood vessel damage and organ damage leading to strokes and heart attacks (the number one killers of lupus patients), kidney failure, liver failure, brain damage, and so on.

So, we can’t just leave it alone.  We need to treat.  How do we do that?

Use medications in stepwise fashion, giving time to see the results.  Most treatment begins with NSAIDS (non-steroidal anti-inflammatory drugs like naproxen, etodolac, and celecoxib.  If disease is more severe, the treatment may also include prednisone.  Other medications are added in a fairly orderly fashion.  With the exception of NSAIDs and prednisone, lupus medications take time to act, and the results of adding a medication may not be fully evident for anywhere from 2 to 10 weeks.  It takes patience, but overmedicating can be avoided by giving each additional medicine or dose change the time required. 

Use the least amount of corticosteroid medication that works.  At the beginning of treatment, corticosteroids like methylprednisolone and prednisone may seem like life-savers.  They work quickly, and large doses can turn a severely painful, highly active flare into a day at the park in short order.  Beware.  Corticosteroids have a myriad of short- and long-term effects that can be life-threatening by themselves:  stomach ulcers, osteoporosis, diabetes, increased severity of infections.  These are not drugs to play with.  You shouldn’t alter your dosage or restart a prescription on your own.  When your doc prescribes a taper, work with her/him.  They’re trying to minimize harm. 

Use steroid-sparing medications.  While much of lupus activity could be controlled by simply increasing corticosteroid doses (sometimes to outrageous levels), that isn’t acceptable.  Other medications may be added to your regimen simply to control the disease without using higher doses of steroids.  Ideally, one should be on no prednisone, but an amount of 7.5 to 10 mg per day is the most we generally feel is “okay” for chronic use. 

Concentrate on controlling the disease activity, not the pain.  Most pain in lupus comes from active inflammation, therefore you can decrease or eliminate pain by controlling the disease.  That means a focus on getting the disease under control is crucial.  You can treat pain all day long, and might feel well because you aren’t hurting, but underneath the disease is sizzling and doing its damage.  Getting rid of the flares of inflammation is extremely important.  When you don’t have the disease controlled, your pain medication usage can accelerate to higher and higher levels, adding medication dependency or addiction to your list of problems.  No one needs that.  That said…

Use enough pain medicine to function.  Nope, this is not a contradiction to my words above.  Everyone needs to be able to care for themselves as well as possible.  Using enough pain medication to run a marathon is excessive and ill-advised.  Taking enough pain medicine to allow you to dress yourself and cook a meal and be productive is reasonable.  Physicians have studied the best use of pain medicines, just like we study everything else.  When your doc tells you to put it on a schedule and prevent painful episodes, she/he knows what works.  Give it a try instead of being a pain medicine rebel. 

Use medicines that do double duty.  Depression is common in lupus.  As a matter of fact, lupus can cause all kinds of psychiatric syndromes.  If you have to take an antidepressant, consider that some of them will also decrease your awareness of pain.  That’s a good thing.  Let your doc know that you’re aware of this possibility, and discuss the options that are there for your individual case.  Serious thought should be made to getting that extra benefit.  Likewise, lupus can cause seizures, and some anti-seizure medications can also help with pain control-another double duty med possibility.  If your NSAID and prednisone cause swelling, and you have hypertension (a common combination in lupus), maybe your blood pressure can be treated with a diuretic (fluid pill) that will help both conditions. 

On the whole, you’re going to take lots of medicine for lupus.  Anything that lightens the load while serving the purpose is going to be welcome.

Don’t forget food benefits.  I’m a damn good doctor, well-trained by anybody’s standards (Vanderbilt University, Jefferson Medical College, Johns Hopkins Hospital).  Nevertheless, my nutrition training was minimal.  I’d call it “the pits” if I wasn’t afraid of being teased for using food puns.  (yeah, I’m funny!)  When I was diagnosed with lupus 16 years ago, I briefly skimmed the nutrition literature and saw some admonitions to avoid meat products.  That was it.  It took me ten more years to get seriously interested in more natural therapies for my illness.  By that time, the Integrative Medicine field had been advanced a great deal by the efforts of Dr. Andrew Weil and others.  Recommendations for eating with lupus now included a comprehensive plan for an “anti-inflammatory diet”, and for the use of helpful spices like ginger and tumeric, which reduce inflammation.  This plan does contain the old “avoid meat products” instruction that I saw so long ago, but there’s a lot more to it.  It’s not difficult, it’s good eating, and it’s wonderful to help yourself without taking another handful of pills. 

Don’t fall for solutions that are based on simplistic explanations.  Suppose you know that lupus is a disease of the immune system.  There are lots of products on the market that claim to help your immune system, for example, echinacea.  You might think that if it “helps” the immune system, it is good for your disease.  Not so.  Your immune system is already overactive, and it’s doing things that hurt your body.  It doesn’t need help.  It needs to be reined in.  This kind of thinking, without the knowledge of all the underlying factors, can cause you to make choices that hurt you.  Anything you think of taking or doing should be checked with your doctor. 

Don’t fall for unproved treatments.  There is an association of physicians (only a few hundred out of the hundreds of thousands of docs in the U.S.) that practices chelation.  They claim that you can give intravenous agents that will bind up the bad, inflammation-producing substances in lupus patients.  Nothing has ever proved this to be a viable treatment.  This isn’t the only scam out there.  If a rheumatologist doesn’t suggest it and approve it, don’t do it.

Treat the emotional stuff.  I have said it before and will say it many times more-antidepressants and therapy have saved my life.  Lupus is a tough disease.  It causes lifestyle change that would challenge a rabbi.  It can cause physical changes in your brain that affect your moods.  It requires medication therapy that can affect your brain and moods.  It is necessary and completely worth it to deal with this and treat it.  Sitting alone in your room, contemplating the end of the world and/or suicide, is not acceptable.  You need your best brain to fight this disease.

Never give up.  I made my first diagnosis of lupus in a 20 year-old girl that I treated in dermatology clinic as a resident.  That was 1985.  Four major classes of medications that are effective in treating lupus have been developed since then.  Every time I’ve worried that I was getting to the end of the treatment possibilities, something else has become available.  Research is a good thing.  It is saving lives in lupus, and we will all benefit from it. 

 

Peace.