I’m Ba-a-a-ack …

Wow! It’s hard to believe that the last time I posted was August 11. Normally, I’d feel a bit guilty about abandoning RheumaBlog for so long, but this time, I have a good excuse.

I’ve been swamped. Totally, completely, overwhelmingly. And, to be honest, it felt pretty good to be so busy, at least most of the time. I’d almost forgotten what it felt like to have my days so filled up with activity.

So, what have I been up to?

Well, I did go to Philadelphia for Healthline, as I talked about in my last, longago post. And, as I expected, I really enjoyed my three days away from home in completely new, fascinating, unfamiliar surroundings. The flight there on the

Rittenhouse Square

Rittenhouse Square

first day was good: my only white-knuckled moments were during the several take-off’s and landings, which is normal for me, craven chicken that I am. And the great city of Philadelphia—at least, the part I was able to see—was beautiful. My room at the Raddison Blu Warwick Hotel near historic Rittenhouse Square was fabulous—and one of the city’s oldest hotels. Unfortunately, I didn’t have much

Radisson Blu Warwick Hotel

Radisson Blu Warwick Hotel

time for sightseeing on the second day, but I did get to spend some time strolling around the square in the bright, moist-warm sunshine. I treated myself to a delectable lunch at a restaurant called Rouge and later on, joined my fellow patient-panelists and the Healthline staffers for a meet-up dinner that evening. I tried the Philadelphia cheesesteak. Because, well, Philadephia.

Healthline’s Thought Leadership ePatient event on the third and last day went

Rouge restaurant

Rouge restaurant

really well. I thought I’d be nervous, speaking to a large group of total strangers, but I wasn’t. The audience, about 40 young advertising experts, was casual, interested, and friendly. I talked about how I’d discovered I had rheumatoid arthritis, how I’ve treated it over the years and how I’ve lived with it, and then, spoke about the subject more important to them: what I think of the current advertising for the biologic DMARDs that treat RA (which is what they create). Using the comments several of you sent to me, I told them that

The view from my hotel window.

The view from my hotel window.

future ads should be more realistic in terms of how well these drugs actually work, etc. Afterward, we broke up into small groups to answer disease-specific questions. The whole event was fascinating—and fun. And it was great to have the opportunity to meet—in person!—several of the Healthline.com editors and other staffers I’ve worked with or met via email.

Then it was time to go back to the airport and fly home. Healthline had arranged for a local car service to pick me up, then return me to the airport. The driver of my Lincoln Town Car was appalled that I hadn’t been able to do any sightseeing, so he took me on a quick ride around town on the way, pointing out the more famous sights. He took particular delight in showing me the famous “Rocky” steps that were Rockyfeatured in the movie, and the statue of Sylvester Stallone as Rocky Balboa, his muscle-y arms raised in exhausted triumph over his head.

We arrived at the airport—and that’s when it all went downhill. I wanted to give my driver a good tip for being so nice, so I dug into my carry-bag for my wallet. It was gone.

We did a frantic search through the Town Car’s trunk—where I’d put the carry-on and my suitcase—and then the back seat. And it wasn’t there. I apologized to the driver—he was very upset that I’d lost my wallet and was quite understanding—but he had to leave, as another customer was waiting. Trying to stay calm, I went inside and called the hotel.

Just before leaving, I’d purchased a cup of coffee in the ground-floor café, then

Warwick Hotel lobby

Warwick Hotel lobby

made a quick stop in the ladies. I asked the hotel to please look around for my wallet, which I thought must have somehow dropped out of my bag. No one had come close enough to me as I waited for my car to steal it from me. (Note: I am aware of how easily—and sneakily—thieves steal wallets. I was pick-pocketed once in Cologne, Germany many years ago…)

Hotel security couldn’t find my wallet. My flight was due to leave in 90 minutes. I needed to get my ticket (which, thank the gods, I’d arranged via computer the night before; I just needed to check my suitcase and get the paper ticket). The trouble was I had no identification. Without it, I couldn’t do either. Visions of being stuck at the Philadelphia airport without any ID, money, debit card or credit cards started running through my mind. How in the world was I going to get home if I missed my flight?

Stay calm, I told myself. Just. Stay. Calm. After talking to a couple of different airline clerks, who had no good suggestions and were clearly too busy to care, I

Another view of the Warwick

Another view of the Warwick

went to the TSA officer at security and threw myself at her mercy. I explained what had happened. My flight was already purchased and confirmed, I said, but now I had no ID and couldn’t get a boarding pass. Please, I said. I can’t miss this flight.

Thanks to the fact that I’d put my checkbook (for some reason… I have no idea why I did that) and a bottle of prescription pills with my name on it in my suitcase, I was allowed to board my flight. Of course, I had to go through the whole security thing: the whole body x-ray, then the whole body pat-down, and then having my suitcase, carry-on, and laptop case searched for explosives and potential weapons. And then, with my RA flaring in my hands, feet, and hips, I ran through that airport carrying and dragging all three.

Once on the plane, I had no way to buy snacks or a meal. And once back in Sacramento, I was only able to get my car out of long-term parking by writing the city a check. I drove the hour and 10 minutes home, totally exhausted and aching. And the next day, started the long process of replacing everything I’d lost. Except the cash, of course. Sigh.

Next up: Moving Mum

Philadelphia, here I come …

I’m flying (!! flying!! Ack!!) to Philadelphia tomorrow to participate in Healthline’s Thought Leadership ePatient event, which takes place on Thursday. It brings a few patients, like me, and the people who create pharmaceutical advertising together to meet and talk about what’s working–and what’s not in their efforts to make us comfortable with their products. I’ll be one of a panel of four patients. My specialty is, of course, rheumatoid disease.

PhillyMontage

The idea, as I understand it, is to help pharmaceutical advertisers understand the “patient’s journey” and patient’s needs, taking into consideration what types of technology we use–TV, Internet, tablets, apps, and through which media (blogs, pharma websites, health websites like Healthline)–and how they can reach us more effectively.

I’m looking forward to the event. I think it’ll be really interesting–and educational–on both sides of the room. And Healthline, too.

And, since I’m just one little patient with one little blog, I thought I’d toss some questions out to you, too. They’re pretty much the same one Healthline asked me as we were preparing for the event. I’d love to hear your answers, and I’d really like to share them with the pharma group on Thursday. You can either pipe up here in comments or email me: bluewren56@gmail.com

The questions:

1. What suggestions might you make to pharmaceutical marketers/advertisers who market autoimmune arthritis drugs? How could they do it better?

2. Have you ever visited drug brand websites to get information? If so, when? During what part of your journey? During Symptoms, Diagnosis, Treatment research?

3. Do you use social media for health information or management support? If so, when and how?

4. Do you feel there is a gap between patients and doctors? Can pharmaceutical marketers help bridge that gap or would you rather get information from a third party, such as Healthline, so you can make more informed treatment decisions?

Thanks, everyone. I think this is going to be a blast. I’ve never been to Philadelphia before, and I may have some free time on Wednesday to do a little sightseeing. I’m bringing my camera so I can do some touristy things. And of course, I’ve gotta try a beer and a cheesesteak.

And while I’m a bit nervous about public speaking–each patient has to give a 10-minute introductory talk about their illness “journey”–I’ve done it before.  I’ll just have keep a bottle of water handy for afterwards, because I always seem to have a ferocious dry-throat-tickle-coughing attack directly after I sit down. Nerves, I think.

Wish me luck! And please do tackle some of those questions, if you would. I’d like to know what you think.

 

Take some of the “ow!” out of turning a key

Last week I received a bubbly email from Jenny. She asked me to review a product she represents because, she explained, she thought it might be helpful for people with arthritis in their hands and fingers.

Hmm, thought I. And what new, wondrous, why-didn’t-I-think-of-that product might this be? I read on.

Key caps. Yep, little colored caps for your house keys, mail keys, office keys, you-name-it keys. With stick-on labels.

Now, these are handy in their own right. But how in the world might they help people with rheumatoid disease, lupus, psoriatic arthritis, osteoarthritis, and any of the other 100-or-so types of arthritis? Jenny piqued my interest. I had to know, so I replied to her email, agreeing to try her key caps and review them for my RheumaBlog readers.

0714103218

Nice, neat, easy-to-open packaging. I just taped the top closed again so I won’t lose my key caps.

My set of Label-Label Key Caps—that’s the brand—arrived on Saturday. I immediately set to liberating a few, along with their labels, from the package*. There were eight (8) key caps in a variety of both bright primary and pastel colors, and two sets of 16 labels (eight printed with HOME, GARAGE, OFFICE, and GATE, and eight blank, for each key cap.)

*Anyone who has arthritis in their hands knows the blood-pressure-raising fury that takes hold when faced with that Horrible Plastic Eggshell (HPE) packaging. It can’t be pried open without amazing, muscle-y gyrations (maybe a very large octopus could do it) and cutting the stuff requires ultra-strong, sharp scissors—or better, a terrorist-style box-cutter with a brand-new razor blade. Not only are HPE packages dreadfully painful for anyone with arthritis to open, the cut edges of the plastic casing are dangerously sharp and poke-y. There. Will. Be. Blood.

But I’m off on a tangent-rant. They don’t package Label-Label Key Caps in that bloody HPE!

0714103257

It was super-easy to access the key caps and the labels.

Instead, the clear plastic package is thin and molds around the shape of the key caps, yes. But it’s attached to the thin cardboard backing (not more cursed HPE!) by three simple, narrow folds and a single staple, not that aggravating Eternal Adhesive from Hell (EAH). The top of the packet is open. It was too tight for me to slide a finger down into, but I was easily able to unfold one side of the plastic to access both the key caps and the labels.

None-to-minimal pain, people. This is important.

I hand-lettered one of the sticky labels “Mom” and stuck it onto my house key (which I washed off first with a little soap and water, as per instructions, which were simple and clear). The label stuck tight and stayed when I stretched the key cap over it. The letters fit into the little window perfectly.

The rubbery key caps themselves are thick, soft, and grippy. And they’re amazingly stretchy. Mom’s condo key is easily the largest of the keys on my key ring, other than my car key, but the bright yellow Label-Label Key Cap stretched neatly over it.

There was one drawback: putting the rubbery cap on the key was tough for me. My hands and fingers have been particularly tender and swollen because of an ongoing flare and a rapidly rising barometer. Working the cap over the key and snugging it down elicited a fair amount of wincing and groaning. It hurt.

However, I did it. It took only about 30 seconds and was absolutely worth the discomfort.

0713115725

Success!

Because now, Mom’s bright red house key is easy to see and pick out from among all the others on my ring. Not only that: because of the thick, rubbery cap, it’s easier for me to grip and turn when unlocking and re-locking the door (I tried it). So in spite of that one wee drawback, Label-Label Key Caps are a Label-Label win-win, just as Jenny promised they would be.

I wanted to use another key cap for my aunt’s house key, but because of the “ouch” factor, I asked my 82-year-old mother to put it on for me. She did it cheerfully–and easily–in no time. Nothing wrong with her fingers!

So, see, if your hands are too sore for you to put your Label-Label Key Caps on your keys yourself, then anyone standing around handy nearby can manage it for you, if they’re nice like my mother. It will make them smile—it’s sort of fun to put the cap on the key. Plus, they get to help someone they like and admire, and this little good deed adds a few more degrees of positive energy to their life-karma. Another Label-Label win-win!

And since we’re speaking of wins, Jenny from Label-Label Key Caps informed me that the company would be delighted to invite RheumaBlog’s fans to win some free key caps of their own. She wrote, “…in order to win a package of key caps, they must go to our Facebook page at http://on.fb.me/1rnMrdd, like our page, share one of our posts, and comment below the color of key caps they like best!”

Sounds pretty easy to me. ;)

Label-Label Key Caps really are a fine little product. I had fun trying them and writing about them. And they’ll make unlocking the door just a little less “owwww-y!

A Few Photos For Fun

I mentioned in my last post that my daughter’s birthday was last week. Here’s the cake I made her just before she arrived:

Carys33RainbowCake

And here is it afterward:

Cary&RainbowCake33

I started a new art project too: colored pencils on pastel paper. The subject? A Stellar’s jay that lives near my home in the mountains.

Art-StellarsJayStarted

 

Wren’s Monthly Update

Hard to believe it’s been nearly a month since I last posted!

And yes, June was a busy month–just as I anticipated. Suddenly, my freelance workload picked up, so I was squashing in bursts of writing at all hours between numerous trips to Sacramento County to visit and tour potential new homes, sorting and packing stuff from closets and from under beds, bittersweet runs to the local hospice charity thrift with boxes full of donations, and several irksome dump runs.

And of course, along with the physical work, there was the emotional cost of preparing for a move as momentous as this one. Nerves were jumpy, tempers on edge, the next mini-burn-out just one more aggravation away.

But we did it. I’m pleased to say that Mom and I weathered the storm. Aside from a few flat-out sick days for her and my usual daily thrum of rheuma-dragon-induced discomfort, we did just fine. It was all systems go.

Then our buyer’s loan fell through. We’d finally found the perfect condo and were *this* close to putting money down; while we were both glad everything went pfffft before that money changed hands, we were pretty bummed. We still are, since it means starting all over again. But as time moves on, we’re both glad to have a little breathing space again. (And of course, just as the pressure was relieved, my writing assignments slowed back down to a trickle. I’m going to do some artwork instead.)

Mom’s condo is back on the market, so we’re once again keeping it in pristine, eat-off-the-floor condition 24/7 (an aside: my mother being the fanatical neat-nik that she is–and her advancing age hasn’t changed that–her home has always been pristine 95 percent of the time, so this isn’t any huge change  ;) ).

And of course, I always look for–and find–silver linings. Although there still may be some culling and tossing left to do depending on the size of the apartment or condo we eventually move into, I think we did darned good job of Getting Rid of Things. The Load is much smaller. In fact, some of the hardest stuff, emotionally, has been dealt with. When this move finally happens, I’m hopeful that it will be much less painful overall than it might have been.

My RA has been bothersome, but it didn’t ramp up into The Awful Flare I was afraid of. FDR was never so right as when he said “the only thing we have to fear is…fear itself — nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.” It remains concentrated mainly in my hands and feet, a constant, mostly-low-level throb and ache. When it grows larger, I can just about count on seeing that the barometer is rising on my Weather.com page. And while there have been some rough, painful nights, even those were relatively few. So far, so good.

In other news, my daughter turned 33 (!!?!) last week. I baked her a rainbow cake and gave her a very nice set of high-quality colored pencils. Like me, she’s an artist, so I hope the gift will inspire and motivate her. I have the same set myself–and I’m about to start a new project.

Why now? Why not?

I hope this finds all of you feeling good and enjoying the summer. Here’s wishing everyone a great 4th of July.

 

One. Day. At. A. Time.

So now, the dragon is gnawing and blowing searing-hot breath onto the bottoms of my feet, mainly at the base of my toes.

It’s been so long since he did that.

I could do without the reminder. Although my life was full of wonder and adventure back then —I was living and working in Germany during the final years of the Cold War and the joyous fall of the Berlin Wall—I was also struggling with daily, almost unremitting pain on a scale that I’d never before experienced. RD attacked my body and joints within months of arriving there.

This pain, in the here and now, isn’t as awful as it was back then. I say that a lot in these posts, and it’s true, but sometimes I feel like I’m apologizing for complaining about it at all. But pain is pain, and it still takes a moment-by-moment toll on the way I live and work. I wake, as I used to, wondering how on Earth I’ll push through it all day. Simply getting out of bed is demoralizing.

Maybe what I’m feeling now is a sort of weary disbelief. My RD was dormant and mild for so many years, I held onto the hope that it might stay that way. After all, I broke down and started seeing a rheumatologist when the dragon began nibbling on my hands again. I started taking drugs for RD—something I’d decided I’d never bother with again after their spectacular failure during my first 10 years with the disease. I was proud of myself for taking this preventive step; for facing the slow re-awakening of my nemesis head on with humor and bravery.

I guess I hoped I’d headed the monster off at the pass. I don’t want to believe he was too big for me.

With my hands constantly swollen, sore, and achy, and now my feet falling under attack as well, I find myself waiting—with some fear, I’ll admit—for the next blow. What will it be? A knee? A big toe? A shoulder? My rheuma-dragon’s ally, hip bursitis, is flaring again, as well—perhaps it’s in training for a ferocious, full-on attack.

I’m trying not to be discouraged. I recognize that stress, in all its forms, affects RD negatively. My stress levels have risen recently, it’s true, though I reject being stressed by finally having work to accomplish each week. I love freelancing. I love writing. I love being paid for my skill and my work. How could it cause me any stress? I don’t feel stressed over it. I approach my desk with pleasure each day.

And yet, the reality is that deadlines are stressful, and stress—even mild stress—creates whatever those chemicals are in my body that trigger more flares. Just acknowledging that stresses me. The hard fact is that there’s no such thing as a blissful little stress-free bubble for me—or anyone else—to live inside of. The only way we achieve that is by dying.

I’d rather not do that, just yet.

The other, more obvious source of stress (and in turn, increased RD activity) is preparing to move mom into a new home. (And me with her, of course.) We’re presently in the serious process of looking for an apartment or condo to rent or lease—and discovering just how appallingly small even “large” apartments really are, along with their equally appalling prices. To move into one we can afford, Mom must discard, donate, pass along to me and my sister, or sell ¾ of her current belongings. To say that everything she possesses is coated in a thick patina of memories and sentiment is an understatement. And she’s soldiering on, but she’s grieving. She knows this move, which will strip her of most of her physical reminders of a cherished past, will be her last, a final defeat as the generous nest egg Dad left her dwindles away in an ever more expensive and bewildering world. Her courage humbles me.

OK, I’ll admit it. I’m stressed just witnessing the process.

Now add to all that, that Mom and I interact with each other, daily, with the underlying tension of the universal mother-daughter relationship. Add to that two strong women living in a single household in which one has the power and authority of age, relationship, and ownership, and the other has, well, none of the above.

Stressful? Yes. I can’t wait for this move to be over with.

I worry about Mom, too. Her physical health is, naturally, fragile and slowly becoming more so. She’s 82, after all. Her short term memory is increasingly spotty—and her long-term memory is starting to show distortions, too. I’m fearful that this move will exhaust her, forcing her to watch, helpless and powerless, from the sidelines as her incompetent, lazy elder daughter dismantles and discards her life.

Stressful. So stressful.

Well, there’s nothing I can do about any of this except roll with it. And try not to get too stressed. [laughing] I’ll just acknowledge that my rheuma-dragon has cleverly chosen to launch his real attack at the most opportune time for him, and defend myself as best I can. I’ll meditate. Try to get out for a walk each morning. Breathe. Pace myself. Rest when I can. Take my meds and push on through. This is a big ol’ bump in the road, but it will be behind me by summer’s end.

I’ll just take it one day at a time.

The Whirlwinds of May

Once again, it’s been forever (OK, it just seems like forever) since I’ve checked in here at RheumaBlog. My excuse? The month of May has been a little … busy.

Mom put her condo on the market last July (hard to believe it was that long ago! We’ve been living in “show” mode ever since) and, after many mini-flurries, then major flurries, then no flurries at all of interest, it finally sold. Just last week. There have been new and overwhelming flurries of real estate phone calls, questions, and paperwork ever since.

And then there was the usual monthly line-up: doctor appointments and lab tests and follow-up appointments with Mom’s primary care doc, her cardiologist, her gastroenterologist, and her urologist. The results so far? Mom’s age is taking its normal toll on her body and her heart, which is slowly, naturally wearing down. Smoking for 40 years and breathing for 82 have also weakened her lungs, but not nearly like you’d expect. She has a twitchy, unhappy tummy (nothing new). She’s prone to infections in her waterworks, like most elders.  But overall, “you’re doing great compared with most people your age I see.” This was the verdict given  Mom  recently by her nurse practitioner, a smart, super-competent, smiling, middle-aged woman Mom likes far more than her tiny, blonde, teen-aged primary care doctor, who still has (I swear!) baby fat and braces on her teeth.

Also, this month we took Kitty-Kitty to the vet for her rabies vaccine and some matted fur issues and discovered some amazing things about her innards (more on that another time). I spent a week away, caring for my

"Mrs. Beasley," the doll that 6-year-old Buffy carried everywhere on the 70s sitcom "Family Affair."

“Mrs. Beasley,” the doll that 6-year-old Buffy carried everywhere on the 70s sitcom “Family Affair.”

disabled uncle while my aunt visited a friend in Washington state. I had the straight hair on the front and sides of my head permed to match the rheuma-med-side-effect curly hair on the back of my head. Now all my hair is curly. I look a bit like Mrs. Beasley (even the glasses) but I like it.

As all this was happening, I continued to enjoy a steady trickle of free-lance work. It filled up the time I had left over from daily house re-cleaning and neatening for possible showing, Mom-caring-for, and the contemplation of and preparation for putting colored pencils to paper in an effort to scratch my inner “you must make art!” itch. More on that another time, too.

Then, last week, my uncle from Washington, D.C. arrived for a five-day whirlwind visit (he’s a whirlwind of the first order, just like my mom was before advancing age finally forced her to be satisfied with intermittent but furious gusts). Three days later, my sister from New Mexico (another, little-er whirlwind) arrived for a seven-day visit. Thus began casino jaunts, trips out for restaurant meals, a dinner party, and shopping trips. After uncle left, we had a much-needed, full day of rest.

And then we started looking at apartments to move into down in Sacramento. My sister flew back to Santa Fe yesterday.

Today, for the first time this week I have some time to work on a couple of new free-lance articles. The deadline is EOB tomorrow. Mom wants to go see some more apartments and start the exhausting process of getting-rid-of in earnest, as moving her into an apartment will mean some seriously major downsizing. But I can’t help her until my own work is done—I need to have some income. We’ll have to arrange some sort of schedule so that both of us are able to meet our responsibilities.

Finally, there’s my old rheuma-dragon. Since I posted last time with my good news, he’s become even more active. He gnaws, hard, almost ceaselessly on my hands, and he’s starting in on my feet. Yesterday he chewed on my right shoulder for most of the day. None of this is serious pain. I’d classify it as a 5-6 on the ubiquitous pain scale, but it’s bothersome. I fear it doesn’t bode well.

Along with the nagging pain, I’ve had many more of those RA fatigue and brain-fog days. They’re new symptoms for me. Please excuse me, but I really frigging hate both. Unlike my relatives, I’m not and have never been a high-energy whirlwind. My usual pace is relaxed and sauntering. But it’s always worked just fine for me (and driven my mom and sister nuts. Tough s—t, as they say). This fatigue, though, is killer. It slows me way past my usual no-hurry pace, though so far I think I’ve been able to cover it. And I know: the secret to coping with it is pacing myself. But I’m a newbie. I’ve never had to consciously pace myself because I already did, naturally. I’ll learn, I expect.

I just wonder how I pace myself when I must help mom prepare to move within the next six weeks, keep up my freelance work, and do all the other, daily chores, etc. that make up each and every day. My sister will return around the actual moving date to help, thank the gods, but in the meantime gang, I’m on my own.

And I’m worried. It was encouraging, last time I saw my rheumy, to see an improvement in my RA blood tests as a result of his fiddling with my meds, but as usual, the lab test results don’t seem to actually reflect my reality. Too bad.

Well, enough carping. Like Mom, overall I’m doing pretty well. I’ll just keep that uppermost in my mind as we move into the chaos that June promises to bring.