Wednesday, July 27, 2011

Virtual lupus support group, Tuesday, Aug 9th at 8pm. I'll be there!

Looking to connect online with some other lupus patients in a support group? Have a hankering to meet me up close and personal...at least via a computer screen? Then join me in a week and a half, on Tuesday, August 9th at 8pm, as I host a virtual Lupus Support Group alongside the founder of Friends' Health Connection (FHC), Roxanne Black, author of Unexpected Blessings and lupus patient.

FHC was started in 1988 as a one-to-one support group for those facing medical issues. Today, it's grown into a thriving national network of health and wellness services, complete with virtual support groups where featured guests often lead the discussing. I'm thrilled to be joining Roxanne in the upcoming meeting. It's their first virtual support group devoted to lupus, so don't miss out on the opportunity to participate. I'd love to "meet" you!

All you need is a computer, preferably with a camera and audio capabilities. You'll see my mug front and center during the meeting, but if you don't have audio or video, no worries. You can type in your questions and comments via a text box and still participate.

Want to join us? Follow this link to register, and take a few moments to check out the site. You do have to be a member of the community in order to participate, but joining takes all of 4 minutes. (I promise - I just did it!) They have a ton of stuff to offer, so don't miss out.

Monday, July 25, 2011

Slowing it down - out of respect for the big girl panties, at least.

Fitting with my personality, I pretty much try to do everything at record speed. I type fast, I talk fast, I even drink fast (milk, orange juice and water, at least), and when it comes to errands, chores, and other tasks - I do them as fast as humanly possibly. Time wasted is time lost in my book - but I work to convince myself otherwise.

Interestingly, two things have recently curtailed my speed-demon mode - one of which is named Deirdre and the other, Bernadette.

1) It became readily apparent on the first day of potty training a few months back that life was going to have to S-L-O-W down if we were going to make any progress. I was going to have to let Deirdre take her own sweet time, regardless of what I had on the agenda. The waiting, trying, cajoling, and convincing were a bit exhausting - at least for the first couple of days. But then, you adjust. You realize that only good things will come from spending twenty minutes in the bathroom while your cute-as-a-button 2 year old works on pottying in the big-girl potty. That reading the same books over and over again while in said bathroom actually gives you some pretty great quality time with your little lovebuggy. It was a painfully slow process in the beginning, yes - but watching her beam with pride as her hard work, determination, and our combined patience began to pay off. And what do we have to show for it? A perfectly potty-trained little lady. Sure, she still wears diapers when see sleeps, but I figure we have plenty of time to ease out of those...she's still in a crib, still napping 3 hours a day (on a good day) and 11 hours at night. Why mess, you know?

2) The second speed deterrent was when Bernadette, at about 7 months old, developed a bad case of the startle-bugs. You got up quickly from the table, she got startled. You sneezed, she got startled. You made any sort of quick, hasty movement (like, say, when you're rushing to do dishes, fold laundry, or pick up), and she would get frightened and start to cry. Thankfully, she's over it now (because SHE'S now the one making the quick moves...scooting across the floor and the like), but for the month or so that it lasted, I really had to curb my franticness. My frenetic energy wasn't well-received, and so I changed it...no doubt, for the better.

And oh, how my recent trials in hastiness reminded of my early days with lupus. In the beginning, of course, EVERYTHING slowed down, because adjusting to the pain, swelling, and fatigue was just so overwhelming. But after realizing that life wasn't going to change or improve anytime soon, I decided to just thrust myself back into "busy-mode." I did my best to pack it all in as furiously as possible - work, personal life, social engagements - I thought the harder and faster I pushed, the more likely I could "outrun" lupus. That the disease would eventually fall away because she couldn't keep up.

But we all know how that strategy works (or doesn't work!). So once I wised up, I found myself slowing down, ratcheting back, and walking instead of running. And you know what? It worked! Life with lupus wasn't quite as taxing when you weren't taxing yourself to the hilt. And I came to appreciate "slow and methodical" versus "fast and furious." Sometimes you don't get quite as much accomplished as you'd like, and other times, you simply don't get anything accomplished at all. But in the grand scheme of things, that long list of to-do's can wait. Your health, wellness, and long term happiness cannot.

Of course, Deirdre still tries to convince me that she can wait "just one more minute" before we head to the potty. But she and I both know better. The blocks can wait. The tinkle cannot.

Friday, July 22, 2011

A dose of my own (defensive) medicine

I stopped at my dry cleaner the other day to pick up some cleaning and to drop off a bright fuchsia silk shirt. It has about a dozen ruffles up the front, which is enough for me to pay the extra for dry cleaning, but the fact that the tag says, "professionally dry clean only" makes it a bit of a necessity.

That said, I'm always looking to save a couple bucks, so I decided to ask what would happen if I washed my little pink number in water. I have a ton of stuff from this same store which says, "Hand wash or dry clean", so I thought I'd just check and see if I could sneak this shirt into the same category. (Also - if you recall, I replaced my washer last year with a snazzy new guy, which is my new best friend...it has a "Soak" cycle and a "Hand Wash" cycle for this very reason...so I didn't want to miss an opportunity to use it!)

So I uttered my off-the-cuff, seemingly non-offensive question to the owner of the shop who was helping me, and boy, did I get a response! She raised her voice a few notches, clearly annoyed and somehow offended, and said gruffly, "You want to wash this? Okay - you wash this, the color will bleed. You will have an ugly, light pink shirt that you'll want to throw away. So you choose - either dry clean or throw it away."

Wow. Not the "Oh, I wouldn't try to wash silk. It will practically ruin your shirt" response I was expecting.

Clearly, I put her on the defensive, even though I had no intention of doing so. Maybe I was the 15th customer that day to ask if a garment could be washed instead of dry cleaned, maybe she was sick and tired of people trying to get out of using her services, or maybe she was just having a crummy day. Any way you look at it, I hit a nerve. I didn't mean to, but I did.

And that's what people used to do to me all the time.

I realize now, when people would tell me to slow down or take it easy, they weren't trying to be patronizing - they were just trying to help.

And when people would offer their help - they weren't trying to insert themselves where they didn't belong - they were just trying ease my burden.

And when people would simply ask how I was feeling - they weren't trying to be nosey. They were merely trying to express their concern. 

It wasn't out of pity that they asked, it was because they cared.

I hope I can remember that as I continue on my way to living well, accepting help, encouragement, and advice along the way. I just hope my dry cleaner knows how much I appreciated her advice. I should mention it to her the next time I'm in, don't you think?

Wednesday, July 20, 2011

The lupus nap: a welcomed respite

When I crawled into bed to take my mid-afternoon nap yesterday, I thought I'd make a quick mental list of the items on my to-do list. Here's what I came up with:

Email seminar venue in Cambridge
Email girlfriend who's been under the weather
Contact dogsitter
Schedule dermatology appointment
Look up fabric and zippers for new sewing project
Wash Darwin (cling peaches and syrupy pancakes are decidedly not good for a pug's coat)
Pick up weeded weeds from back stoop (3 days old...)
Pick up prescriptions at drugstore
Pick up library book that's on hold
Order new pictures of Dee and Bee
Email family about August get-together
Do a post
Review presentation for Cambridge seminar
Pick up Dee's dress from tailor
Return call from friend before he leaves on month-long vacation
Check online for typical 9-month bottle schedule (looking for suggestions on going from 5 bottles to 3!)
Check online for recommendations for traveling abroad with 2 1/2 year old. (Car seat on plane or not?)
Email friend to thank her for recent friend introduction
Put away laundry
Make dinner
Finish flyer for NYC book event in September

Wow. Guess I had a lot on my mind, huh? The beauty of this whole process was that as I mentally added those last few items to the list, I thought to myself, "Thank goodness I have a nap to take right now." I mean - how crazy would I make myself trying to get all of the above accomplished over the course of an afternoon? And there's no stopping it - I would have been like the Tasmanian devil, rushing from here to there - probably washing Dar with one hand while trying to do a Google search with the other. Seriously - there would have been way too much multi-tasking going on, and the whirlwind of activity probably would have left some scars.

But none of that happened, because I took a nap instead. A long, relaxing, well-deserved, welcomed nap.

 Aren't I a lucky dog?

Monday, July 18, 2011

Lupus, Plaquenil, and my eyes: the whole sordid story

We all know that with plaquenil comes annual (if not semi-annual) visits to the opthamologist. It seems that the use of plaquenil can cause (although it is rare) temporary pigment changes to the macula of the retina. It's my understanding (and my direct experience) that these changes are temporary...and that with discontinued use of the medication, the changes are reversible. I can't speak to the exact percentage of people on plaquenil whose eyes are affected, but despite the fact that it is very, very low...I'm one of the people that make up that percentage.

I started plaquenil shortly after I was diagnosed, and took it for about 4 years. I was on 400mg for the majority of the time, but was on a dosage of 600mg for a period of time. In fact, I was on that higher dosage when I was taken off of it due to the pigment changes that my opthamologist noted in my annual checkup. (In fact, when my rheumatologist increased my dosage to 600mg/day, my opthamologist increased my checkups to every six months. I might have even gone every three months for a spell!)

That said, my eyes return to normal, or so says my opthamologist (I couldn't tell any difference) after I discontinued the drug, and I stayed off of the drug for about 3 years, using Cellcept in its place. With both of my doctors' blessings, I opted to go back on plaquenil in order to get pregnant in 2007 - and have been on it ever since, with no problems at all.

So as of today, my eyes are hanging in there with plaquenil. But I don't want to get too far ahead of myself, because my opthamologist has just ordered two new tests, both of which are new to me.

The first, which I had last week, is called an OCT test, or an optical coherence tomography test. It actually scans the retina and allows my opthamologist to view both the retina and the macula (the small, sensitive area of the retina that gives central vision) in 3D to determine changes or alterations in the eye. Seems like it's all the rage in regard to eye exams these days...so glad my eyes and I could be so en vogue.

I was hopeful that this newfangled test (super common in testing for age-related macular degeneration, or AMD, but new to me) would be enough for this round of eye exams, but alas, it's not going to be that easy. (Never is when it comes to my eyes and lupus!) Turns out the eye assistant who ran the OCT test wasn't able to get a very crisp, clear picture of my eyes - my left eye in particular. Not sure why not - it's a question I have in to the doctor, but in any case, my doctor wants to step it up to another eye exam, called an ERG, or an electroretinography. I'll let you read about it here - it looks a little awkward to me, but as the literature says, I'll kick things off by "assuming a comfortable position."

Hmmm. I'll have to keep you posted on that one.

As always, feel free to chime in on this one. Always looking to hear from others who've been down this same road!

Friday, July 15, 2011

Got an iPad? Got lupus, too? You're in luck!

Good news on the Apple front - Despite Lupus is now available on the iPad!

Thanks to the keen (or is that geeky?) efforts of my brother-in-law, and the helpful resources provided by my au pair (aka her macbook), Despite Lupus: How to Live Well with a Chronic Illness has now been uploaded, approved, and is ready for purchase on the shelves of Apple's iBooks. It's available in 6 stores - including the United States, Canada, the UK, Australia, Germany, and France.

Not being a Mac gal myself, I'm not sure how to direct you to order your copy of the ebook, other than providing the links above. But I'm sure you Mac users and your little apps can figure it out.

Thanks for your patience while I sorted out my ebook availability - Kindle, Nook, and the iPad (which also allows for books on the iPhone, I believe.)

Have I forgotten anyone?

Motherly indulgence



I couldn't resist posting these pictures today.

Kinda cute, huh?

Have a great weekend!

Wednesday, July 13, 2011

This phone call may be recorded...

You know how you kind of "gear up" for a doctor's appointment? You take time the night before to get all of your questions down on paper, you think about your symptom activity on the drive to the doctor's office, and you mull over the highlights of the appointment-to-be while you're in the waiting room. You mentally prepare yourself to see your doc face to face - deciding on how you're going to effectively and efficiently touch on all 29 things you want to address in the 7 1/2 minutes you have with the doctor.  You're armed and ready...at the top of your game. Now all you need is a physician to start the volley.

At least, that's how I usually approach my visits to the doctor. But just recently, I was caught off guard, because my conversations with the doctor extended beyond my appointments, due to extenuating circumstances. As I mentioned on Monday, my doctor decided to change his course of action following a recent appointment. I was thrilled to hear from him - as I wasn't completely satisfied with the plan of action after he and I had last spoken. It wasn't as though I was completed dissatisfied...I was just a little unclear of how we were going to get my kidney issue under control. I wanted to hit it hard...not jump the gun with medications or procedures necessarily...but I definitely didn't just want to sit back and wait for a flare to take root.

So thankfully, my doctor felt that action was needed, too...because he called to explain that he wanted to start a new medication, a hypertension medication called Cozaar.

Now - let me set the scene - because I'm sure you've been there:

I was in the car when the phone rang. Deirdre was in the back, chatting away, and I was in the middle of making a U-turn in my sister's neighborhood. I was trying to track down my niece who had been dropped off at an unspecified neighbor's house, and Deirdre and I were literally scanning the driveways for any car or person that we might recognize. Just as I pulled out my phone to see who it was, my sister's car pulls into the neighborhood, and she's trying to flag me down to explain that she was going to pick up my niece and that I should just wait at her house. To say that I was in the middle of something is a bit of an understatement.

So was I a little unprepared to take his call? Uh...yeah. Not only was I thrown off when he mentioned a blood pressure medication that we'd never talked about, I was taken aback that he'd decided to change his course of action. You know how it is - so many things swirl through your head in those 2 minutes when the doctor is talking. Is he taking action because things are really desperate? Does he remember that I've always had really low blood pressure? Is he doing this because he sensed that I wanted action, and so he's prescribing something that I don't really need to take?

I mean really...do I always have to make things so difficult?

That said, I managed to park the car on the side of the road, pull myself together, and ask a few very pertinent questions, if I may say so myself:

1) What if any are the side effects from a drug like this?
2) What should I expect to see happen between now and my next appointment?
3) Is Cellcept (a drug that he'd mentioned previously and one that I know and love) off the table? If so, why?
4) Is this drug treating the symptom of the extra protein, or are we addressing the issue of my malfunctioning kidneys?
5) Do you still think we should wait for a biopsy?
6) Will my already low-blood pressure be affected?
7) Is this drug typically prescribed to lupus patients?

Not too bad, off the cuff, right? Trouble is...it took me about two days to reconstruct the conversation so that I could come up with the answers. I couldn't for the life of me remember exactly how he'd answered my questions. To date - I still can't tell you how he answered #4. I know he said something like, "Well, that's a good question." But then I can't remember what else he said. I do know this - he said enough that I was willing to hang up the phone and start taking the drug. If I REALLY hadn't gotten the answers I wanted - I wouldn't have gotten off. But I did...so now, I had some work to do.

If only the conversation had been recorded! If only I could have had the doctor on speaker phone and Deirdre could have taken notes for me. It was all just too much information without enough warning.

So here's what I did: I hung up the phone, thought about the conversation for about an additional 30 seconds, and then resumed the task at hand which involved my niece, my sister, and one very eager 2-year old in my back seat who couldn't understand why her aunt and cousin were running from here to there while she had to stay cooped up in the back of the car without making a peep while Mommy was on "a very important phone call." Seriously.

But this is the great thing about lupus tenure...I didn't panic. I didn't freak out. And I didn't immediately call my doctor back to say, "What the heck did we just talk about?" I just waited for a few hours, thought back to the conversation, and attempted (in a very calm and peaceful manner) to piece together the answers to my questions. In fact, I decided to wait until the prescription arrived in the mail before taking any action at all. Truth was, I didn't even know how to spell this new medication that he'd prescribed. (He hadn't been all that sure of the name on the phone himself!)

Once the prescription arrived in the mail, I took about 10 minutes to do a little research, discovering that these drugs are prescribed quite frequently for this exact purpose. Okay. Now we're getting somewhere.

Next, I mentioned the whole thing to my pulmonoglogist, who I saw just a few days later. He had his own opinions on the matter...much of which coincided with that of my rheumatologist, but he added his own objective insight. He recommended that I see a nephralogist before too long, and he also thought an ultrasound would be a little less invasive, but a good second step. Ah, yes...much better than a biopsy - and still more telling than just a 24 hour urinalysis. Good info, doc. Just keep it coming.

Lastly, I attended my monthly lupus support group meeting just a week after the conversation, and lo and behold, 4 of the members are on hypertension meds just like the one I was prescribed. They were able to clear up many of the outstanding questions I had...and put my mind at ease about the ordeal...something that I don't think even my doctor could have done.

(One last thing - I also emailed a girlfriend to get her advice on the whole thing, figuring that she'd been down the whole lupus kidney biopsy path herself. She shared her experiences and I instantly felt empowered. I was no longer in the dark, alone, or crazy. It was fabulous!)

So there you have it - proof that support groups (and others with lupus tenure) help, consulting and networking your doctors is invaluable, and taking the time to do your own homework on your health is worthwhile. Never knew managing a chronic illness was a full-time job, did you?

Monday, July 11, 2011

Lupus Kidney function - part II

On one of the last episodes of Despite Lupus, I wrote about my recent trials with my kidneys and the fact that I showed three times the amount of protein than I should have in a 24-urinalysis test a few months back. I've been awaiting the results of my most recent test to see if the protein is still showing up - and good news is that the amount of protein is down. Still abnormal (about twice as much), but at least better. My doctor discussed the results at my last appointment, and we agreed to repeat the test in a couple of months. He said the current level of protein is definitely something to watch, but not as alarming as it was a few months back. Kidney function is normal and all other tests look good (and I feel great!), so we're not going to panic.

At least we're going to try not to panic.

After walking out of the doctor's office, I sat in my car and just contemplated the situation. Was I satisfied with the plan of action? Did I think we should be treating this a little more aggressively? Was a repeat test in a few months enough?

Truth was - the answer to all of those questions in my mind was no. I didn't like the fact that we knew my kidneys weren't working the way they should, but we weren't proactively doing anything about it. I didn't care for the idea of waiting another 2-3 months before retesting, and I really didn't like the fact that at the last appointment, my doctor had thrown out ideas like cellcept, cytoxin, and a kidney biopsy, and now we weren't even considering any of them. Was I making a big mistake by letting this slide by, while my kidneys were running amuck?

I decided to give it a couple days - I'd sleep on it, consult a few of my friends who've been down this road before, and if I still felt unsure about waiting until the next appointment, I'd call the doctor and discuss.

But he beat me to it. Within a few days, he called to say that on second thought, he'd like to take action. He suggested that I start a drug called Cozaar, a blood pressure medication often used with diabetic patients who have kidney damage. He's hopeful that it will reduce the protein in my urine, and, from what I've read online, it seems to be a pretty standard prescription to help with kidney issues.

Now - did the thought of adding a brand new medication to my regimen throw me for a temporary loop? Yup. But I'm so glad my doctor called. I'm relieved that we're not just going to sit back and wait - wait for real damage to happen, wait for my disease to flare, wait for my symptoms to be so bad that serious measures have to be taken. I learned the hard way that letting symptoms go unaddressed is not the way to handle lupus - ignoring symptoms because dealing with them would slow me down, or acting as though I'm invincible in the face of this disease. No - I've found the exact opposite to be true. The sooner you embrace the disease, and recognize the changes that need to be made to accommodate it - like getting necessary rest, taking meds, keeping your stress in check, listening to your body, and making good healthy choices, even when you don't want to - the sooner you can turn a corner with your chronic illness.

That said - in an upcoming post, I'll tell you the nitty gritty of what happened during that phone conversation with my doctor. Was I the confident, well-spoken lupus patient I encourage you all to be? Well...kind of! Stay tuned for more!

Friday, July 8, 2011

Despite Lupus in the UK: Workshop and Book signing in Cambridge on August 4th!

Mark your calendars - it's an event!

Despite Lupus will be hosting a Living Well with Lupus workshop in the lovely town of Cambridge, England on August 4th, 2011. Thanks to the coordinating efforts of the Lupus UK contact in Cambridge, who has been oh-so-helpful, the details have been finalized and the event is booked. (Click on the poster at the right for specs!)

Not only will I be speaking, but I'll be joined by the talented Shaista Tayabali, local Cambridge poet, blogger, and lupus warrior. I've had the pleasure of collaborating with her on a publication in the past, and am honored that she'll be joining me for the workshop. Her poetry and prose can be found at Lupus in Flight and her readings of poetry and discussion of life with lupus can be heard from time to time on BBC Radio Cambridgeshire.

Want details? Have questions? Need to RSVP? Shoot me an email at sara@despitelupus.com. I'd love to add you to the list of attendees!