Friday, January 29, 2010

I can see clearly now...thanks to Henry

As you know, we lost our little pug Henry a week before Christmas. While we still think of that guy on a daily basis, I've come to realize yet another thing he taught me about life with lupus. I know, I know - I've blogged about Henry's little lessons before - but this time, I'm reminded of one if not the primary reason why I took the steps to write my book, and why I continue to keep this blog. My motivation? Because I want others to know what I didn't know when I was struggling with my disease.

I can think of dozens of things that I wish I knew when I was first diagnosed, dozens of things I wish I understood when it came to balancing work and my disease, dozens of things I wish I had uncovered about myself and the way I approached the disease. These and dozens of other epiphanies are exactly what I've attempted to notate in my book. It's the issues I address on this blog that I wish someone had told me years ago. And as I've said many times before, much of the information I impart did come from other people - the members of my support group, my family and friends, and my co-workers were all instrumental in helping me figure out the best way to live well, despite lupus. But I wanted it all in one neat, little package - with, I suppose, a front and back cover.

I've thought about this fact before - but since losing little Henry, I've been able to reflect on the things I wish I'd known about raising Mr. Hendo, too: that weight gain, lethargy, drinking more water, and slowing down can be signs of old age...but they can also indicate something else like diabetes; that his reluctance to take walks, jump up on the ottoman, get off the bed in the dark, or do steps could just be him being stubborn...or they could indicate something else like loss of vision. Of course, now that we know all that we do about diabetes, blindness, etc. Darwin's got it made. His brother Hen was just paving the way, taking one for the team, and bringing light to the world, one paw at a time.

If I can help even one person with lupus find their way more clearly, I can join Henry is knowing that my mission has been accomplished.

Wednesday, January 27, 2010

Daily dose (of medication)

In keeping with the drug theme of the week, let me announce that January 2010 makes it official - I've now been diagnosed with systemic lupus for 9 years. And with that diagnosis has come 9 years of daily medication. There hasn't been one day since January of 2001 that I haven't taken medication for my disease. Today, I'm on the fewest number of prescriptions since my diagnosis (just two, plus a baby aspirin and calcium), so the idea of taking as few as 3-4 pills in the morning and another 4 at night makes me pretty darn happy. Because I've taken as many as 17 pills at a time, all prescribed and per doctor's orders, of course, I consider myself a pro when it comes to pill popping. But, I know, even if a doctor tells you that you need them, and even when they're working, the idea of ingesting all of those pills can still be, pardon the pun, tough to swallow. But in all of my days of pill popping, I've learned a few things. Here are just a few pointers for those of you suffering from medication mayhem:

1) Don't self-medicate (i.e. take medications NOT as prescribed). I know it's tempting, but it's in your best interest to follow doctor's orders, particularly where your medications are concerned. There's a reason your doctor is prescribing the pills in the manner in which he or she has, and it's going to make solving your lupus enigma a whole lot easier if you're doing what the doctor has intended. If you self-medicate, you're taking away the control that your doctor has put into place in order to determine how active your disease is, how your body is responding to the treatment thus far, and whether or not the treatment should continue. It also helps to determine what courses of treatment should be explored in the future - if medicine A doesn't work, medicine B might become an option. But if medicine A hasn't been taken as directed, the results you (and your body) are producing aren't accurate, thus muddying the waters as to what drug therapy might do the trick. Self-medicating can only complicate the process of treating and/or controlling your disease - why would you ever want to do that?

2) Get clarification. Assuming that you're putting your complete trust and confidence in your doctor to prescribe your medications appropriately (e.g. choosing NOT to self-medicate), you have every right to make sure you fully understand your doctor's intentions regarding each and every medication he/she prescribes. You should have a complete understanding of what's being prescribed, why, and how it's suppose to work. I'm not saying you have to pore over those little scientific flyers that come along with every medication, but you do need to make sure that all of your unanswered or lingering questions are addressed. Don't know exactly why a drug is being added to your regimen? Ask. Feel like a drug isn't working? Say so. Tend to think the crummy side-effects of a drug outweigh its benefits? Mention it. It's imperative that you work closely with your doctor to determine what the best course of treatment is for you. Not all meds work for everyone - and you're really the only one that can help your doctor determine how to proceed.

In fact, you may find that collaborating closely with your doctor opens up options that might not have ever come up. I can think of several instances where my doctor, as a result of my probing and pertinent questions, changed my prescription line-up in order to better address the issues at hand. And each change was for the better.

3) Don't be unduly influenced. I know you're on a lot of medications - probably more than your whole family combined. And maybe your family's not so keen on you taking all of those medications. But, here's the deal - as long as you're not self-medicating, and as long as you and your doctor are working together to ensure that the medications you are taking are necessary and effective, then you don't have anything to worry about. Now, that said - as most of you have read in blog posts past, my family was instrumental in helping me clear up many of my issues with lupus, including some of my medication mysteries. They were concerned about some prescriptions, disagreed about me taking others, but never, and I mean, never countered my decision once my doctor and I had decided on a course of action. I say, if you can explain to your family (or whomever is questioning your cocktail of drugs) why you're taking what you're taking, what each drug is supposed to do, whether or not it's effective, and what the plan is going forward (taking it in the short term, long term, until it reaches a certain level of efficacy), then you're in the clear. You can always consider what your family has to say, weigh their opinions carefully, and if you think they may be on to something, pose their concerns to your doctor or perhaps a pharmacist and see what the professionals have to say.

4) Do what you can, aside from the drugs. As I mentioned in the beginning, there hasn't been a day since 2001 that I haven't been treated with medication for my disease. And, as far as I can tell, that's the way it will be for the foreseeable future. And I'm alright with that. I figure I'm doing everything I can aside from the drugs to live well with lupus (eating healthy, exercising, getting my rest, watching my stress, making sure I understand my doctor's intentions in regard to the drugs I am on), so if I need the prescriptions I do to make my body go, so be it. But I'll tell you one thing - the minute I have to go up on my prednisone because I'm blogging too much, or add a cholesterol medication because I'm not watching what I eat, or introduce an anti-inflammatory because I'm skipping out on my rest - that's the moment I'm going to re-evaluate my drug therapy. Personally, I like my 4 little pills in the morning. And I intend to keep it that way.

Monday, January 25, 2010

Tally up the meds!

Having spent a total of 3 weeks on the road with Deirdre over the past couple of months, I realize that casually leaving my pill bag out on the nightstand (or the minibar unlocked!) in our hotel room with a one-year old running around isn't going to cut it! No worries, folks - Deirdre didn't even come close to getting her sweet little mitts on my prescription medications...but she sure did love the sound of those rattling pills!

I was able to find a safe, out-of-the way place for my pill bag - a place where she couldn't get them, but I wouldn't forget them. It can be a bit of a challenge - because you need a spot where you won't forget to take your pills each day, a place where you can get to them easily, and a spot where you won't forget to take them when you leave the hotel for good.

Juggling prescription meds can be quite an ordeal, and with lupus, it's almost a guarantee that you have at least a couple of drugs to contend with. When you get a second, check out the poll at the right, and cast your vote. Let's see just how many pill takers there are out there!

(And feel free to leave a comment listing the prescription/OTC drugs you take. I bet there are a few that we've ALL been prescribed!)

Monday, January 18, 2010

New children's book - to benefit lupus!

Check out this new children's book when you have the chance - called " Mama, Won't you Play with Me?", by Meg Walsh, a 10 year veteran of Lupus. It was voted the "Book of the Month" by Mamapalooza - and a portion of the proceeds from her book sales goes to the LFA. How wonderful!

While I haven't had a chance to read the book in its entirety, it looks like a great read - telling the story of Dudley Duckling whose Mama has a broken wing and cannot play with him. (Sound familiar, lupus moms?) It is a story, “written from the heart”, says Walsh and a story in which the characters learn the invaluable lessons of love and family.

As it says on her website, Walsh wrote "Mama, Won’t You Play With Me?" after the difficult time that her family faced as she battled Systemic Lupus. Walsh says her children immediately connected with the main character Dudley and “it is my hope that it will bring comfort to the child in a similar situation.”

Walsh encourages readers to visit her website, to share their own stories and to nominate a charity to receive her donation.

Book also available on Enjoy!

Friday, January 15, 2010

"Preempt" - one of my all-time favorite words

During our recent travels - there was one day when I just couldn't get in a nap at my regular nap time. Due to travel constraints/train schedules/etc., we simply couldn't prevent being on the road (or make that, the tracks) during my nap time. Good thing was that we knew it was going to happen, so we prepared for it as best we could. I slept in that morning, and planned on turning in early that night - but if you're like me, it doesn' t matter how much sleep you get the night before...when your body needs a nap, it needs to nap.

Once things settled down on the train, I was able to tear away from Johnny and Deirdre for a 30min late afternoon nap, and once we arrived at our destination, I took another 30min early evening nap. But I'm telling you - once you get behind on sleep, it's very, very, very hard to catch up. In fact, I don't think it would have mattered how many mini naps I'd taken that day - once I let the fatigue set in, it was hard to fight off. It always is.

Don't get me wrong, (and Mom, don't worry) - I didn't get sick, or feel crummy, or, as mentioned in an earlier post, have any swellings, joint pain or lupus symptoms at all due to that the lack of this one nap. But just like I've done in the past, I had to make absolutely sure that the next day, I made time for a nap. It's kind of like my friend told me one time, as mentioned in my book - you can indulge yourself by "cheating" a little bit with lupus now and again, but you must do it wisely. Or else.

So, that's just what I did. Johnny made sure I got my proper rest the next day (and then some) and my body didn't skip a beat. What's crazy to me is that every day for the past 6 years, I've taken a nap, and not really thought about the fact that I even have fatigue - because the nap ... drumroll, please ... PREEMPTS the fatigue. Of course, this incident reminds me just how much easier prevention really makes things. PREEMPTING that fatigue is simple; FIGHTING it off is a whole different animal.

I particularly like the sense of control I feel when I PREEMPTIVELY and strategically strike up against lupus. Making a move before things get out of hand is just so...gratifying. Here are just a few examples of the PREEMPTIVE moves I've made this week in order to stay one step ahead of that nasty little thing called lupus:

--Skipped the last two errands on my list, because I knew the extra 30 minutes would push me over the edge, past my nap time and into zombie land.

--Bowed out of a social engagement, because I could just feel my body beginning to fade. And if I was fading before the party even began, think of the condition I'd be in an hour from then!

--Asked my husband to take out the dog/do the dishes/put Deirdre to bed, etc. because I was just too tired at the end of the day. It doesn't happen very often, but sometimes, you just need a pass, you know?

--Declined a future book signing because it would have been too taxing to handle with my previously scheduled engagements.

And, of course, proactively scheduling my nap every afternoon in order to ward off lupus fatigue has been the best, preemptive move yet. For I never, if ever (or at least, very rarely) experience even a twinge of fatigue. That's what it's like to feel normal. And what lupite doesn't want to feel normal!

Think you may want to make "PREEMPT" one of your favorite words?

Wednesday, January 13, 2010

The end of a very, very, very good era

I am sorry to announce that a week before Christmas, we had to put Mr. Henry to sleep. Boy, was it hard to let him go. I mean, he's Henry, after all. The Big Guy. Big Hen. Hendo. Hendomania. Hendopolous. Henri Henri. He was the best guy anyone could ever ask for - with a face that could charm the pants off of any vet in a 160 mile radius. And he's done it, too.

Those sweet little ears. Those big brown eyes. His wrinkles, his little mouth, and his squished little pug nose. Even the way he strutted around in his big boy red collar (which eventually became the big boy red harness you see him modeling here) was endearing. I'm telling you, this guy had fans. He got himself into scenarios and situations that could hardly be forgotten. Listed below are just a few of the predicaments he found himself in. I'll preface each by saying, "The incident(s) with..." :

The cigar, the earthworms, the claw, the plate of fudge, the Easter candy, the toilet paper, the Michael Kors sandals, the giraffe bed, the ottoman, bridges, open stairs, paper-towel poopies, Uncle Kevin, his water bowl, the indiscretion in our foyer, the indiscretion under our glass coffee table, the indiscretions on every piece of furniture we own, his toe nails, the tongue tick, the rain. (For a complete listing, see the wikipedia listing for "Trouble with a captial "T".)

He lobbied hard for free refills, loved when we sang Amazing Grace, and asked Santa for a red wagon year after year. (He preferred to ride.) He convinced our dog trainer that he shouldn't be forced to lie down on command, so much so that the trainer told us, "He physically can't do it. You shouldn't force him...pugs are just like that sometimes."

He loved his mom, and he especially loved his dad. He thought his brother and sister were pretty nice, too.
He earned himself a dedication in one of the best selling lupus books on the market, for goodness sakes. Not many pugs can make that claim. That tells you just how special this guy really was.

Henry Henri Gorman is and always will be unforgettable. I just wonder when I'll be able to type his name without tearing up. Maybe someday soon. Maybe never. However it turns out, Henry would want it that way. And, as many of you know, Mr. Henry always got his way.

Monday, January 11, 2010

Je suis desolee: France is out of croissants...

because Deirdre ate them all!

We've just returned from our first trip abroad with Deerdeepants - and boy, did we have a great time! She literally ate her way through France (and the Northern part of Spain), leaving her no time at all to be fussy, overtired, or jet lagged. She was an absolute angel - slept for hours on the plane going and coming (allowing her mom to sleep on the plane), took long naps as usual, wasn't picky about food, and charmed the pants off des europeens. As far as we're concerned, sign us up for our next overseas adventure - this was the best trip ever! (Those of you who've read my book were, I'm sure, anticipating that line. Those of you who haven't, know what you need to do!)

The best part of the whole thing? I believe this marks the first abroad travel I've taken that hasn't been graced by a single swollen digit. That's right - not one finger swelled while I was away on vacation. Usually, taking those red eye flights pushes the limits of this lupite, and no matter how much "sleep" I get on the plane, I'm still not able to ward off a swelling. But not this time! There were no piggies in sight - yippee!

Lupus activity used to be such a given when I would travel. I had come to expect it, and what's worse, accept it. But now, I understand what I can do to minimize my chances of a flare - factoring in extra sleep before hand, packing over a series of days rather than the morning of, scheduling travel around naps, limiting "planes, trains and automobile-like" travel/sightseeing extravaganzas, etc. Granted, I'm in a much healthier state than I used to be so my body isn't as sensitive or prone to lupus triggers...but I know, for example, that taking a 6 hour nap that first day we arrived worked wonders. And boy, did I want to go exploring! I figured a 2-3 hour nap would be sufficient. So when I woke up after 3 hours, I was tempted to sneak off while Johnny and Deirdre kept sleeping. I knew I probably needed the rest, but I was really torn. I thought to myself, "Here's the deal - do I start the vacation out right by resting up, or do I go out and about to satisfy the "doer" in me?" Retracing my steps to living well...I opted for rest. And it really set the tone for the week. And the result? Zippy swellings all around!

Wednesday, January 6, 2010

Disability 101

Got questions about disability? Check out this Disability blog when you have the chance. You can find a ton of lupus-related posts here, or just browse the blog for all kinds of tid-bits. What a resource!

Monday, January 4, 2010

40 screws and counting

A few months back, I was going to blog about how good it felt to mow the lawn recently - how great it was to get out there in the fresh air, push the lawnmower around without any aches or pain, and how proud I felt to be doing something that I used to not be able to do. It felt so freeing to be engaged in a slightly taxing activity, without giving lupus a second thought.

I lost track of that wonderful feeling before I could post it, but had a resurgence just the other day when I put together, single-handedly, a toy for Deirdre that required, among other things, about 40 screws. And there I was, with the Phillips head, screwing and fastening, twisting and maneuvering, as if my hands had never had an arthritic twitch before. It was fabulous to be able to accomplish such a feat - without as much as a stiff finger or a swollen joint. And the agility I had with those teeny little screws...oh, it was such a treat to be able to juggle those little guys without flinching, twitching, or wincing.

So I say, bring on the next challenge - this lupite's ready to take on the world!