Gone Shopping

I dreamed last night that I was trying on new hands.

I know. Creepy. But as in most dreams, trying on fresh, new pairs of mitts was as unremarkable as doing the same with new shoes. Except … like it is when I get new shoes, the dream process was fraught with pain and frustration.

See, when I put the first shoe of a new pair on my foot, I know instantly whether the pair will be coming home with me. More often than not, knife-like pain shoots rack of shoesthrough my foot the moment I put my weight down on it. Groaning–and silently shouting expletives in my head–I yank that instrument of torture off my foot, slap it and it’s mate back on the rack, and continue looking. But the fun has gone out of the hunt.

In this dream it was the same thing. I’d pick out a nice, attractive new pair of hands from a row of towering shelves like the kind you see in discount stores.. I’d work the new pair on gently, like gloves (this made absolute sense in the dream), and bend my fingers. Instantly, rude pain would jab into my joints and I’d have to pull the offending hands off and keep looking. With each failure, I became more glumly resigned to keeping the hands I had, even though they were painful and frequently dysfunctional.

I woke suddenly, frustrated and disappointed. Good morning, world.

I’ve only rarely dreamed about my rheumatoid disease. Which is odd, really, considering its grumpy, growl-y domination of my thoughts–of my life–most days. There are a number of creaky body parts I’d love to replace too.

For instance, I’d love a new pair of feet. These old ones are pretty much worn out. They hurt even without shoes, even when they’re warm and toasty. Imagine how nice it would be have new ones! I could walk all over the place, on any surface–even on sharp, uneven gravel–with little or no discomfort. I could wear any kind of shoe my fancy fell on: frivolous little things with wafer-thin soles, gorgeous, dangerous stiletto-heeled pumps, long, sexy, calf-hugging boots, strappy little sandals crusted with glittery jools. I could wear any pair of athletic shoes I wanted, and I could have classy leather oxfords to wear with slacks.

Instead of any of those, the shoes I have to buy must be flat or –maybe–have a very low heel of two inches or less. The toe box must be wide and round, and there has to be a sturdy arch support. If I need to wear the shoes more than an hour or so at a time, the soles need to be soft and–ideally–padded.

So, I have a rack full of overpriced, clunky-looking, old-lady shoes in my closet. My single pair of nice leather pumps are simple and black, with a small, rounded toe and a two-inch heel. I only wear them if I know I won’t have to walk any further than the parking lot and back. Once.

I could really appreciate a new pair of hips, too. To start, I’d get a smaller pair, since the ones I was born with have always beena little too wide for my taste. But more importantly, I’d choose hips that didn’t hurt. I’d get a pair that didn’t jab me every time I took a step, or start aching when I sat still for more than a few minutes. I’d love a pair that didn’t throb during the night, waking me up and forcing me to roll to one side, then the other, over and over until morning.

Dreams can be fun, and they do have a tendency to put images to amorphous longings. But that’s all. Reality requires that I live with the hands, feet, and hips I have, however grumbly they make me. And being realistic also means that I’m grateful. For what? That my rheuma-dragon hasn’t caused more damage than this; that the meds I’m taking for it are keeping the old monster drowsy and bumbling; and that there’s always hope for the future.

So much of life depends on our attitude and outlook. I try to keep mine positive and optimistic, to keep smiling, and to keep my eyes peeled for the gifts it offers every single day.

And, of course, I dream of a cure.

Post-Doctor Day

First: Thank you all for your comments on my last post! As hard as it was to see, I really wasn’t expecting any comments at all. Honestly, you guys are the best.

Second: Yes, I fixed the black type problem, thanks to a kindly WordPress technician. I’d inadvertently imported some freak formatting when I copied and pasted the post from Word into the WordPress editor. That’s never happened before, but I’ve learned my lesson. I’m typing my posts directly into the WP editor from now on.

And now, on to What The Doctor Said.

As I anticipated, he asked me to be patient and give the Humira another three months to work, reiterating that it could take up to six months. Each RD patient is different, he said, and some people’s immune systems accept the drug quickly, others take longer–or never accept it at all.

I was disappointed, but not surprised. My other DMARDs have taken varied periods of time to become effective, too. I had, perhaps, unrealistic hopes that Humira would be my SuperDrug, swooping in like a speeding bullet to save me from the rheuma-dragon.

My elbow flare turns out to be lateral epicondylitis–more commonly known as tennis elbow. There are a couple of possible explanations for it, since I haven’t played tennis since I was in high school. My rheumie reminded me that RD affectstennis elbow more than joints alone–it also affects soft tissues like tendons and ligaments, and more seriously, organs like the heart, lungs, and even the vascular system. He feels this new, painful aggravation appeared as a comorbidity of the rheumatoid disease, just like the chronic bursitis I’m still struggling with.

I’m sure he’s right about that. But after I got home, I did a little googling, as we do. And I discovered that it can also be caused by overuse–specifically, overuse of a computer mouse or even of a laptop computer.

“Ahah!” Yes, I am on my laptop for several–and often many–hours each day, both working and playing. And, since my new room is still full of boxes and other stuff that we haven’t found space for in the new apartment, I haven’t been able to use my desk. Instead, my laptop resides on my lap as I sit in the living room armchair. My elbows are pressed close to my sides.

Now, this has been quite comfortable up until now, so other than wishing I could have a quiet place to work, it hasn’t really been a problem. But discovering that not being able to use my desk might be the culprit behind my painful elbow might help to get Mom to finally go for renting a storage space here in the apartment complex. It’s relatively inexpensive and quite affordable, but she’s become obsessive about pinching her pennies–even though I’m paying rent on the extra room. Sigh. Maybe tennis elbow will do it, eh?

The doc gave me a small velcro-d strap to wear just below my elbow that helps to relieve the pain. He prescribed an analgesic salve, as well.

As he examined my joints, he noted how dry my skin is, and asked if I was having any discomfort in my eyes.

Yes, I said. They’re always bloodshot, and they often itch and burn.

He called the dryness Sicca syndrome, saying it was a possible precursor to Sjogren’s, and prescribed artificial tears for use four times a day. In the meantime, he said, we’d keep an eye (heh-heh) on things, since Sjogren’s is such a common comorbidity of RD.

Wonderful.

In other news, Mom woke up feeling ill this morning–she has a headache, nausea, and diarrhea. This is not good.

I’m going out later this morning to pick up Christmas dinner from Honeybaked; we decided not to go through all the stress of making another huge feast this season. And, given the price of groceries, buying the meal already prepared is cheaper. We’re expecting Mr. Wren, my daughter Cary, and her significant other, Matt, for Christmas, but that could change if Mom is still sick. We’ve had to postpone the holiday before because she was ill. We can do it again, and freeze the feast for later. We’ll see.

Here’s hoping this post finds you feeling good and almost ready for the holiday. Thanks again for all your comments. You really have no idea how much I appreciate them.

Doctor Day

In a few hours I’m seeing my rheumatologist. The main topic we’ll discuss during this appointment: Humira, and how it’s working for me.

My take: It’s not working. Since starting it three months ago, the symptoms of my rheumatoid disease have increased in severity. And I’ve basically been in one long, long flare that started soon after the second injection.

The most recent symptom? Three days of stiffness and pain in my left elbow. It didn’t disable the joint, but it was very uncomfortable upon movement and throbbed, with the occasional sharp, shooting pain, at rest.

The pain referred to my upper arm and down to my wrist. Today marks the fourth day, though it’s a bit less painful so far this morning.

To say I was—and am—dismayed is an understatement. In more than 26 years, I’ve never had an elbow flare up. I had real hope it would remain that way forever, but obviously, that’s not to be.

I’ve also experienced an on-again, off-again sensation of deep fatigue. That symptom first appeared about six weeks ago. I’ve been very lucky throughout my RD journey in that the fatigue that characterizes the disease has struck me only rarely. But this, too, is no longer the case.

I’m curious to see what my lab results (my session with the vampire was on Monday this week) say about the Humira and the state of my disease. Three months ago, they looked pretty good; my rheumatologist started me on Humira purely based on my increasingly problematic symptoms. So I suspect that my lab results will still be good, since that’s the sneaky way my rheuma-dragon works.

Will my doc switch me to a different biologic DMARD? Or will he suggest I stick to the Humira for another three months, giving it more time to work? To be honest, I’m expecting the latter response. I know this drug can take quite a long time to become effective, and it’s possible it will start working for me soon. Soon-ish. Maybe.

Or maybe not. Anyway, I’ll check back in later, after the appointment, with the decision. This is one of those instances where wishing for luck or crossing my fingers seems fairly useless; neither outcome—stopping the Humira to try another drug, or continuing it to see if it might finally work—offers much hope for any immediate relief. And I should know better than to expect a quick, positive outcome. RD—my wicked old dragon—doesn’t work that way.

A Poem for Sunday

You do not have to be good.
You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your bodyWildGeese
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting —
over and over announcing your place
in the family of things.

Mary Oliver

Inner Dialogue

Today is the third day of a dull, all-over flare about an hour ago.

I injected my latest Humira dose the day before yesterday. And I thought, “well, maybe I’m hurting a lot more today because I’m at the end of that last, two-week To Dodose.” The thought was both hopeful and resigned. If I was feeling worse because the Humira was wearing off, that meant it was actually working (I felt better after taking it). That was the hopeful part. On the other hand, more pain might simply mean my rheuma-dragon was getting stronger—and the Humira was another useless weapon.

But it’s only been a couple of days. Hopeful Wren tells me to be patient, let the Humira kick in. Pessimistic Wren tells me to chuck the happy-crappy and face the truth. The stuff doesn’t work.

Then rational Wren chimes in. These drugs, she says, can take a long time to work. Usually, three to six months. It’s been almost three months, yes, but that doesn’t mean the Humira won’t ever work. And you know when you see the doc, he’s going to tell you to be patient and give it another three months. And you’ll nod and say OK because, really, what else are you going to do?

Sigh. Naturally, I hoped this fancy, new (to me) biologic DMARD would quickly turn the tables on my rheumatoid disease. I was looking forward to waking up in the morning without being as stiff as the tin man. I thought it would be so nice toGet-Out-of-Flare-Free_21 put on my house robe with hands and fingers that didn’t gripe and yell with pain. I was looking forward to swinging my legs off the bed and standing up—and not even noticing my feet because, of course, there was no reason to notice them. No stiffness, no pain, no nothing.

And I was looking forward to going through my days without being constantly reminded—by suddenly aching joints, sudden twinges, constant low-level soreness, and a mild but insidious fatigue—that I have an incurable disease that may cripple or even kill me one day, whether I take medications for it or not.

Do you guys go through this too? This constant, involuntary inner dialogue you-get-used-to-itabout being sick? I get so tired of it. My mind’s constant grousing makes me feel like 1) a weak, sniveling wimp, 2) a complainer (even if I don’t say anything out loud to anyone), and 3) a histrionic hypochondriac.

Yeah, I know better. I’m really not any of those things.

My life up until age 31 was perfectly normal, with all of the normal illnesses and injuries: chicken pox, skinned knees, an occasional bout of flu, a sharp pneumonia and a couple of bad sprained ankles when I was a teen (platform shoes), and seasonal colds. I only thought about feeling bad when I felt bad, and that was relatively rare.

The same applies to those six years when my RD mysteriously went into medication-free remission. The only difference was that I can only recall a single cold during that period.

But when my rheumatoid disease is active, whether it’s mild or severe or somewhere in between, it forces my mind to dwell on it. And that makes me question my own feelings, and sometimes, my own reality.

On to more pleasant news: Mom and I dragged out the decorations and brought Christmas into our new home. This is a hard time of year for her; Christmas just hasn’t been the same for her since my Dad died, and the holiday brings with it 592014 Christmas 2 years of memories—with Dad as the central character.

But this year she was the one who brought up decorating the place. I’m so glad! She doesn’t miss him less, but maybe living in a place that’s not connected to memories of Dad is soothing her pain a little bit. I hope so. We had a good time putting up the tree, choosing and hanging the ornaments, talking about the memories each one brought to the surface, and setting out Santas and elves and pinecones and sparkly candles all over the place. It made us both laugh and smile, and you know what? There’s nothing better in the world than that.

Thanks for listening to me rant today. Felt good to put it in words—a catharsis, in a way. I hope this post finds you feeling good and enjoying the holiday season and the close of another year on this precious old planet we all call home.

Bad News About the Flu

Breaking News: This year’s flu vaccine is basically useless.2014-15 Flu

Here’s the scoop. Scientists weren’t able to identify this season’s most virulent strain until September, when it was too late to include it in the vaccine. So even if you’ve already had a flu shot to protect yourself, you can catch this flu.

Still, the vaccine does protect against several of the other strains of influenza floating around out there, so there’s that.

The new, nasty rogue strain, called H3N2, is a mutant. Dr. Thomas Frieden, Director of the Centers for Disease Control and Prevention, stated in the New York Times that so far, 91 percent of the approximately 1,200 flu samples tested since flu season started were of the H3N2 subtype of influenza A. Nearly all the rest were influenza B.

Frieden stated that in flu seasons when the H3 subtypes are more common than H1 subtypes, there tend to be more hospitalizations and deaths.

The CDC still recommends that you get the flu shot if you haven’t done so already. Why? It will protect you against the other flu bugs circulating this year: the swine flu, influenza B, and small numbers of the other H1 strains. And, at the very least, it may provide a weak defense against this newest, most virulent mutation, H3N2.

The CDC is urging doctors to quickly prescribe Tamiflu or Relenza—antivirals—without waiting for test results in patients that present with flu symptoms. In addition, it recommends that patients with asthma, diabetes, or lung or heart problems see a doctor without delay at the first sign of a possible flu.

You May Be at Greater Risk

People with weakened immune systems caused by disease or medications (like those of us with rheumatoid disease, psoriatic arthritis, lupus, and other autoimmune diseases, and who may also taking DMARDs that further weaken the immune system), the elderly, and children, and others should also see their doctor right away if they get flu symptoms. All are at greater risk of contracting the flu—and its complications, such as pneumonia, bronchitis, sinus infections or ear infections.

Although the antivirals Tamiflu and Relenza aren’t miracle drugs, the earlier they’re administered in the illness, the better they work. Although all they do, usually, is shorten the duration of the flu by one day, in a vulnerable patient, that 24-hour period could mean the difference between life and death.

So far, five children have died from flu-related illnesses this season.

What To Watch Out For

According to the CDC, people who have the flu often feel some or all of these signs and symptoms:

  • Fever* or feeling feverish/chills
  • Cough
  • Sore throat
  • Runny or stuffy nose
  • Muscle or body aches
  • Headaches
  • Fatigue (very tired)
  • Some people may have vomiting and diarrhea, though this is more common in children than adults.

*Keep in mind that not everyone who has the flu will have a fever.

Protect Yourself

While this season’s flu vaccine is fairly useless, there are still steps you can take to help protect yourself from catching the flu, no matter which strain it may be:

  1. Avoid close contact with people who are sick. And if you’re sick, avoid close contact with others to avoid spreading the illness.
  2. If you’re sick, stay home if you can. Help prevent others from catching your illness.
  3. Cover your mouth and nose with a tissue or your upper arm when you cough or sneeze.
  4. Wash your hands often to avoid picking up germs—or spreading them. Use soap and water, washing for at least 20 seconds. Don’t forget to scrub under your fingernails. If soap and water are unavailable, use an alcohol-based hand rub.
  5. Avoid touching your eyes, nose, and mouth. You can pick up a cold, flu, or other illnesses when you touch something contaminated with germs and then touch your eyes, nose, or mouth.
  6. Practice other good health habits. Clean and disinfect frequently touched surfaces at home, work, or school, particularly when someone is ill. Get plenty of sleep, drink plenty of water, eat nutritious, healthy foods, manage your stress, and be physically active.

It’s early in the flu season, but with the flu vaccine as weak as it is, this season may be a bad one. Please take good care of yourself and stay well.