The Count

17 and 1/2 pills.  I hadn’t counted in a while, and I was a little surprised.  It is truly distilled to a minimum: 

1.  Prednisone takes five tablets right now, a 5 mg and four 1 mg, to make up my 9 mg dosage.  I am on a very slow, gradual taper.  In two more weeks I can decrease by 1 mg.

2.  Three vitamins, B12 for my mostly meatless intake, folic acid for the two medicines that deplete it from my system, and D to replace the action of the sun that I must avoid.

3.  One nonsteroidal anti-inflammatory, for my osteoarthritis.  Helps with pain, too.

4.  A low-dose diuretic for the swelling, and potassium to replace what it depletes.

5.  A beta blocker for the chronic tachycardia that I’ve had since my diagnosis.

6.  Two antidepressants, one of which helps tremendously with the lupus and fibromyalgia pain.

7.  Over-the-counter antihistamine.  I am allergic year-round, crazy when you consider I’m on prednisone daily.

8.  One pain pill, still on minimum dosage with as-needed use.

9.  Low-dose aspirin to prevent the crazy blood-clotting that I experienced a few years ago. 

Periodically I need to lay it out, pill by pill, and convince myself that every bit of this regimen is necessary.  The alternative is to start dropping off pills and wait for the consequences, something my training and experience discourages.  I understand the aversion most people have to taking so much medicine.  This is not, however, polypharmacy.  Polypharmacy refers to mindlessly throwing prescriptions at problems without considering necessity, interactions, or possible alternative therapies. 

That’s the pills, folks, just the pills.  Still on weekly injections of methotrexate, and the rituximab infusions every four to six months.  Also on diet with very few animal products, as much exercise as I can tolerate (including our new Wii), and positive thinking. 

This inventory will have to do.  I have to go deal with a stinky, disobedient dog.

Peace.

Losing Mothers and Keeping Life Open

I woke tired this morning, after a deliberately early bedtime and a seemingly comfortable night’s sleep.  It was a struggle to be ready in time for the 9 a.m. expected arrival of a workman, but I made it, and was disappointed when he did not.  He appeared two hours late, bringing a helper so that he could finish the task of washing my house in one day.  My brick-and-siding exterior was begging for that pressure washing and soapy scrub after four years of sloppy rain baths. 

I was also begging for something – what?!  I forced myself to put some things in the Pod, finish laundry, clean up the kitchen.  After some restful time on the couch watching Milk and knitting chemocaps, I gave in to a nap.  I am still tired.  The flare, barely disguised by a modest prednisone increase?  I’m seeing my rheumatologist tomorrow, then getting my first of two chemo doses on Wednesday.  This cycle will move on. 

Last June I talked about the loss of mothers that my daughter’s group of friends has sustained (https://essiewb.wordpress.com/2008/06/08/post-mortem/), and today we’ve hit another of those days.  We heard about the loss of another mom from our old neighborhood and her high school group, as well as the grandmother of a good friend of hers.  I think I pointed out before that the parental losses she has witnessed have been overwhelmingly mothers, with only the rare father dying.  We have no explanation for this. 

The other explanation I don’t have is why they are gone and I am still here.  I have 17 years of lupus behind me, marked by a distinct improvement over the past year when I began rituximab treatment (the B cell killer).  Most of the women we lost were affected by such acute conditions, or by relatively short illnesses with fatal courses.  For the second time in my life, I feel that I’m still here for a reason. 

The first time I was overwhelmed with this feeling was when I was a medical resident rotating through the bone marrow transplant unit.  At that time, mortality from the procedure was 50%, and the patients were all younger than 40.  Children were coming to the hospital, staying long enough for me to become attached (weeks, sometimes months), and then dying.  I had one special buddy who was a preteen girl that I visited when I was on call.  I recently found a card that she wrote me after her discharge, thanking me for a hamburger I brought her on a slow night.  She died soon after, and I felt galvanized to work harder and throw myself into my clinical career.  I had to work “extra” and be better to make up for the dying children. 

Now my feelings about being spared are different.  There’s not the notion that I must make up for someone else, but that there are fruits of life I am to experience, good things.  I am not complaining about my life, or saying that I’ve earned anything better.  It’s just that somewhere inside me is the feeling that the best is yet to come.  Maybe it’s just my innate hopefulness and optimism, but I’m keeping my life open for it. 

Peace.

the war escalates

i hit the wall today.  no caps because my fingers are stiff and sore and it takes extra reach and force to hold down the shift key.  my wrists, shoulders, elbows, ribs, hips, knees and feet also hurt.  my cheeks are red and hot to the touch.  my feet are so stiff that i have to grab for support when i first stand.  yesterday i could feel the heay artillery of the b cells really pushing me, and i increased my prednisone.  doubled the steroids, in fact, from 7.5 to 15 milligrams per day.  it’s not a big dose, but is a relatively large increase.  today started rough and stayed rough.  can’t tell the steroids have done their work. 

this makes a weird dilemma.  i can either ride this period out with increased steroids-much more than i’m taking today- for the time until my treatment next month, or i can request earlier treatment.  my rheumatologist isn’t thrilled with every four months, and probably won’t like making it sooner.  the oncologist, however, told me i should be treated when i needed it, and i think i’m the definition of “needing it” right now.  hmmmm.

i don’t want more steroids for five minutes, much less three or four weeks.  guess i’ll make the rounds and see what the docs say and if they can agree.  i hate making the rounds when i’m sick.  doctor visits are so much easier when you’re well. 

i’m temporarily putting down my other projects, including the recycled cotton fingerless mitts i started yesterday.  i’m making easy crocheted chemo caps so i will have goodies for the unit when i do go for treatment.  i hate to go to a party empty-handed. 

this evening i had dinner at a newish thai restaurant named ‘rain’.  the green curry was so lovely i wanted to take a swim in the bowl.  it had veggies which included frozen peas and carrots, and wonderful tofu that was perfectly fried.  i didn’t mind the frozen veggies.  the cute little diced carrots took me back to my childhood.  i could probably use a supply of them right now; slicing and dicing isn’t going to be easy with these hands. 

dinner was a send-off for my niece, who is moving to chicago so i have a good city to visit.  yes, it’s all about me.  actually, she is moving to solidify a relationship and enhance an incredibly well-rounded life.  i admire the versatility and foresight of people who embrace a variety of roles and trainings, and work so that one overlaps another and another and they all interact.  if it’s not too hectic and far-flung, it must be very fulfilling.  i’ve never felt that i was a unidirectional, narrowly defined person with a single, immutable focus. 

after dinner i had to pass the mall to get home, so i stopped to purchase elastic thread to use in the occasional knitted piece.  the store was closed.  i returned to my car and drove to the next craft store.  i borrowed a handicapped parking space, trudged to the door and through a million other craft areas to the back of the store.  no elastic thread.  i was frustrated by the difficulty of the task, the energy drain and pain from walks that would ordinarily have been easy. 

at home now, i lack the drive to clear off my bed.  i’ll sleep with a pile of paperwork, a knitting bag, my computer and a stuffed animal on my bed.  not that it matters.  that side of the bed has no inhabitant.  might as well make good storage space.

i’ve got good books and lots of yarn.  i think i’ll need them for the next little bit.

peace.

My Body at War

Happy to be back.  That’s me.  Back is here, writing.  I write all the time in my head, unfortunately without that electronic connection to my printer that would allow it to be printed out.  Even better would be a line directly to my laptop, so that my posts could be written straight from the brain.  In reality, a lot gets edited from the original brain posts, and that’s a good thing. 

My brain life is sometimes an extension of the life you see, one where I am able to be the before-lupus, before-trauma Essie.  It occurs to me that you probably think the two are the same.  Only those who know me very well, know all of my history, are aware that there was extreme, life-changing trauma in my life before I was diagnosed with lupus.  One could almost say that my life began again, and only slowly, with profound changes, after that time, and the diagnosis of lupus on top of that…Suffice it to say that it is sometimes desirable to visit that “before life” and free my mind from the knowledge and experience it has now.

I will say out loud that the old adage about God not giving you more than you can bear is bullsh-t.  We certainly do get stuff we can’t bear, and we bend and warp under the pressure.  Sometimes we die.  If we are lucky (and maybe there’s more to it than luck, but it often feels like pure chance), we come out of it all with some hope and the knowledge that we’ve endured, and resolve to continue to put one foot in front of the other and make a working life.

Being on the B-cell killer (yes, abrupt change of direction) has given me a different view of my disease.  The B-cell death leaves me with incredible days of waking with the feeling of physical normalcy, and that lingers in my mind after the effect of the drug is gone, makes me keep returning for those long days of IV therapy.  As a new battalion of B cells develops and begins to invade my body, my symptoms return gradually.  At first, every step of their return made me think I was flaring, but it seems that I don’t truly flare.  Flares began suddenly, waking up one morning with stiff legs and feet, using all my energy to walk to the kitchen, lasting for weeks or months in a static fashion. 

Now the B cells return in stealthy fashion, invading joints and tissues a little at a time, making me gradually lose function and increase pain.  Units of fresh B cells have started this time with my back and my feet.  Once again, pain is every step.  Again, I put on my shoes to dull the pain and relieve the stiffness, and keep walking because I don’t want to lose function or stop taking care of myself.  In my mind, I laugh at the B cells, because they don’t know I’ll be getting treatment again next month, wiping them out for another spell. 

There are side skirmishes in this war.  While the B cells make their onslaught, I put out the fires – an infection here, a drug side effect there, always something to keep me on the alert.  My body at war.  Attacked by itself.  If you are prone to guilt, lupus is a double-whammy of a disease.  How good a person can you be if your own body is attacking you?  What secrets in your past make your bone marrow produce an army of cells that rush to hurt you?  What have you done to yourself-eaten, smoked, bathed in, breathed-to produce this reaction?  Is lupus self-hate? 

Okay, so the brain is big on drama this week.  While it is doing its thing, I’m busy producing a totally new product for my store and my craft fair booth.  News at 10.

Peace.

Chemo Reality

Big reality check.  I went for my lupus chemo treatment yesterday.  I take them every four to six months, and each treatment set consists of two treatments, two weeks apart.  This was the first tiime I’d been with a group that was expressing the difficulties of their situation.  Previously, I’ve been surrounded by people who were either cheery or not talking.  Yesterday, I heard sadness, bitterness, anger, frustration, resignation…a pastor who was there for treatment was writing a sermon, which he titled based on some of the sad things people were expressing.  He talked briefly about hope and prayer, sitting there with his own IV, probably not ten years older than me.  One patient who passed through told another that he wasn’t returning to work, that his doctor had given him six months.  Someone said “When someone finds out I have cancer, the first thing they ask is ‘When are you going to die?’.”  A nurse passed through, commenting on the vigorous conversation in our group, and a neighbor said “Yes, look how we’re all smiling as these chemicals kill every cell in our bodies.” 

 

Now I’m not saying that everything was gloomy.  It was just a realistic, vocal bunch of people who are pissed off at what disease is doing to them.  After 16 years of lupus, you know I sympathize!  We still commented on each other’s activities (one with a computer, another selecting Christmas gifts from an NFL catalog, two of us with knitting, the pastor consulting his handbook and scribbling notes) and shared our water, candy, knits, and even a few phone numbers.  My nurse was older and experienced, the best ever, popping my IV into my requested vein and checking on me regularly, with interesting conversation.  The coffee was freshly made.

 

Inside I had some tears for the fresh pain some were exhibiting.  I had some more tears when I found that my medication grant (my treatment isn’t covered by Medicare) wasn’t going to cover these December treatments.  That $2,000 translates directly into more college loans for my daughter next semester.  I am more than fortunate to have some resources to draw from in these crazy economitis days.  I try not to let the economitis eclipse my decisions about treatment. 

 

This morning I called my parents early.  They told me they were still getting dressed, but they stopped to talk.  We had some big laughs over some of my mom’s boudoir lessons in my childhood.  They were happy and cheerful and expressed great anticipation for their day, relishing the pancakes for breakfast, morning newspaper, soap opera time together…at 89 and 90, they enjoy everything.  What a boost for me!

 

I’ve got LOTS to do today.  I can’t let chemo fatigue oveertake me.  I’m delivering two donated knitted pieces for a church silent auction.  The proceeds will go to a recreation/education center in a depressed neighborhood.  Then I’ll make a huge post office run, sending back some mail order items that won’t work, and posting a couple of packages to customers.  Yikes!  I had forgotten.  I got another order last night.  I have to find the product and pack it.  What am I doing playing on my computer?!

Peace!!

Ain’t Too Proud to Beg…

I had my treatment today at the oncology center.  It was fun.  No, they didn’t give me anything that affected my brain, except the usual Benadryl.  I met some new people, including a woman who’s been on and off in treatment for breast cancer for 20 years, and makes it her business to know everyone in the center.  There was also a new oncology nurse who was an Ohio transplant.  She called me “Sweetheart” and worried when her first IV turned into a blood bath.  I didn’t care.  We had a good laugh about what to call it (a hemorrhage?  a massacre?  or be modern and call it a “hot mess”?).  We had a wonderful Thanksgiving supper with all the fixin’s.  The office was letting us in on their holiday party.  My IV seemed to be done faster than usual, although I had time to knit a fingerless mitt all the way to an inch from the top.  Seriously, it was a good time.

 

I can’t help but contrast that with the disaster of the week.  Karabella is discontinuing that gorgeous yarn, Breeze, that I love so much for lace scarves.  (see Karabella Breeze Lace Scarf « Essiewb’s WeblogCashmere and Silk Lace Scarf Yes, that’s it, the photo is straight from my store.  Flying Fingers has a discontinued yarns section, and that’s where I learned of my imminent loss.  I ordered a few balls, since they are on sale, but not near enough to make me feel secure.  After all, I’m going to have to have enough to last the rest of my life.  I’m not sure how I should estimate that:  two balls per month x 12 months per year x 3 new advances in lupus therapy x 10 years per advance…oh heck, I may as well just corner the market.  I wonder if begging helps in this situation. 

Dear Karabella yarnmaking people,

I am desperately in love with your yarn, Breeze.  As you know, Breeze is that fantastic combination of silk and cashmere that has such a nice way on small needles.  It just wants to become a gorgeous scarf, or a wisp of a top over a pretty camisole.  It moves well in my hands.  It is made for me.  Please, please, please, keep making it. 

Please.  I could have a nervous breakdown if I am forced to exist without it.

Please, please. 

If you don’t keep making Breeze, I will hate you forever.  So there.

Yours very sincerely,

Essie

P.S.  I am a doctor and I know what I am talking about.

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.