Recently, HealthyNew24 got in touch and asked me to answer a series of interview questions about living with RA. Here’s the result.
Starting a blog takes a special type of courage. You’re putting yourself out there for the whole world to see, baring your thoughts, details about your life, and sharing your hopes and dreams.
Now add that you plan to blog about growing up with Juvenile Rheumatoid Arthritis, and about what it’s like to live with the disease as a young adult, just as you’re getting a good start in the world.
Please join me in a warm welcome to Stephanie, who’s just started her new blog, “All Grown Up With JRA,” to the online RA community. Stop in and say hi, won’t you?
To read her first post, click here. You can also find “All Grown Up With JRA” in the blogroll to the right.
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 through 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.
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 affects 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.
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.
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 dose.” 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 to 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 about 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 59 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.