Monday, December 20, 2010

Putting "Listen Up, Doc" into practice

If you've read Chapter 4 of my book, or if you've tuned into any of my "doctor" blog posts, you know I'm a big fan of my rheumatologist. Today, he can practically do no wrong - I trust him completely, and our doctor/patient relationship works like a well-oiled machine.

But it wasn't always that way, and my appointments weren't always as easy or effective as they are now. I had to work hard to improve communication and to assert myself during our face-to-face time, gently reminding him that I am more than just a series of blood tests, a message he heard loud and clear, once I started voicing it.

So when the situation demanded that I put my assertive ways into practice during my hospital stay when I gave birth to Bernadette, I jumped at the chance. I've learned in the past that if I want to make the most of my medical treatment, it's my responsibility to speak up and make sure I'm heard. Here's what happened:

During my delivery, one of my attending O.B.'s (not one of my four perinatologists, mind you, but a fellow who was working with them), recommended that 120 mg of steroids (solu-medrol) be administered over the course of delivery - 1 dose before delivery, and 2 doses after. He said that this was standard procedure when there's been a history of prolonged steroid use, and I agreed that that is typically the case, and that, indeed, I was guilty as charged of having a long, sordid history with prednisone. Of course, I also knew that the increased dose of steroids during delivery wasn't an absolute necessity. I explained that, in fact, during my first pregnancy, my doctors and I had thoroughly discussed whether or not I should use them, even consulting my rheumatologist in the process, and we all decided to not to use them during delivery. The effects of the drugs -of which there are many - weren't desirable, and everyone agreed I'd be okay without them, which I was. Thus, I assumed, and the doctors had agreed during an appointment mid-pregnancy, that I could do without the steroids again this time.

That said, this guy wasn't really backing down. I'm sure his doctor's manual said that when a patient takes steroids on a semi-regular basis, that patient must have a boost of steroids during any medical procedure which may cause unnecessary stress to the body (i.e. childbirth.) So while I voiced my opinion based upon past experience, the guy was adamant. I asked that we get a second opinion from one of my regular perinatologists, and while he agreed, he went ahead and ordered up the three doses so the nurses would know how to administer them, just in case. However, because my delivery progressed so quickly, the first round of steroids didn't arrive in time from the hospital I no longer had to worry about dose #1. Now I just had to convince all of the attending nurses that the 2 remaining doses weren't necessary either.

When the time came to take the next dose (shortly after delivering), a new nurse came around to administer the 2nd shot of steroids. At that point, I was looking forward to a little rest after such a long 24 hours...and the last thing I wanted was a big old dose of hyper medicine. So again, I pleaded my case...and asked that she check with the doctor who had just delivered my baby. (I'd had the wherewithal to mention it to her as I was pushing...and she agreed that the steroids weren't necessary, but she hadn't rewritten the original orders yet.) Having checked with my doctor, the nurse agreed that no steroids would be administered at this time.

Two doses to go.

Next came the shift change. The night nurse now on duty still only had the original doctor's orders to go by...which, of course, indicated that I needed a third and final dose of steroids. Per the notes, she was to give them to me at 11pm...and once again, I explained the situation, and asked that my doctor be consulted. The nurse made the phone call, and the order for the final dose of steroids was removed from my chart.

Mission accomplished! I'm so glad I stuck with it - I've had high doses of solu-medrol during past hospital stays, and I really didn't like the effects of the drug. And I give the nurses credit - they were unwilling to stray from doctor's orders, as they should be, but because they were sensitive to my pleas, they took the time to double check and get the answer I wanted. Three cheers for good nurses!

In an upcoming post, I'll tell you about another interesting situation I had during my hospital stay with Bernadette. Once again, I had to tie on my assertive patient stay tuned!

Tuesday, December 14, 2010

Eureka! A triumvirate nap schedule

What's the most recent miracle to hit the Gorman household? The beloved concept of a trifecta of naps, that is, a heavenly 2-hour block of time when Deirdre, Bernadette and Mom are all sleeping at the same time. Wow! Is it fabulous or what, not to mention quiet!

When I was pregnant with Bernadette, I recall dreaming about this notion - the kids and I would synchronize our watches, crawl into our beds (or cribs or what have you), and close our eyes all at the same time. And now that we've done it several times, it really IS a dream come true. Not sure how long it will last - but we'll enjoy it while it does.

During that first year or two with Deirdre, many people asked how I'd managed to make our naps correspond. Had I changed my schedule around to match Deirdre's, or had I made her naps match mine? Truth is, it was probably a little bit of both. I remember Johnny's grandmother being so complimentary in saying that I'd done such a good job getting Deirdre to sleep when I needed to, but I wasn't so sure. I mean, I did move my nap a good hour or two earlier to match her naptime. But she was right to some degree - I was very strategic in my efforts to make the hours between 2 and 4pm a sacred time in our house every afternoon, regardless of what Deirdre had in store.

And now with Bernadette - I'm starting to turn on the strategic machine again. I've been feeding her right before we all go down for a nap, and it's worked like a charm! The most important aspect, of course, is that I'm making my nap a priority, too, not just the girls' naps. They're not the only two that need beauty rest!

So I'll continue to massage little Bernadette's schedule to work with our current routine, but if we need to move things around a bit to make things work with the three of us - so be it. I've never been one to shy away from a new and different way to fit in a nap!

Wednesday, December 8, 2010

Another health insurance miracle

Thanks to our cracker jack insurance agent, Dick Lucier of Diversified Benefits, we're expecting to have new health insurance coverage come January 1st, 2011. When Bernadette arrived, we added her to our existing policy, but Johnny thought it might be a good idea to contact Dick to see if there might be a better option for us. Indeed, there was!

Adding a third person to Johnny's policy (because Deirdre, Bernadette and Johnny are on one policy, while I'm on my own) added a chunk of change to the premium - but Dick was able to find one that would save us money AND improve our benefits. Three cheers for Dick!

We're not in yet, but I expect there to be no problem. If we were looking to switch my insurance, then yes - there would be cause for concern. But I think the girls and their Dad will be underwritten without any trouble at all.

Every time we contact Dick and cry our insurance woes to him, he's able to pull policies out of his hat. I don't know why anyone would hesitate to use an insurance broker - he costs us nothing, and in fact, saves us a ton by doing all of the research for us and presenting us with the best value for our money. I can't imagine wading through all of that insurance jargon in order to find the best policies for our family - but Dick jumps right in and makes everything better.

So if Dick can perform health insurance miracles (he found health coverage for this lupite, after all), why doesn't everyone use him, or someone like him? I thought of two reason, both of which seem to have a bit of crossover when it comes to lupus:

1) Skepticism - So what does Dick get out of the whole deal? Well, I'd imagine some sort of fee paid by the company of the policy we choose. Does it cost us anything for him to do all of the research, legwork, and paperwork, not to mention the deciphering and interpreting related to finding the best policy for us? Not a penny. It doesn't cost us one cent to ask for his help, and he expects nothing in return (well, maybe a referral or two...).

Sounds a lot like those friends and family members who want to help out in our time of need, doesn't it? They ask for nothing, and expect nothing in return. But we assume that when someone lends a hand, they want something for their time and energy, don't we? Most of the time, that just isn't the case.

So during this holiday season, when you're strapped for time and running yourself ragged trying to get everything accomplished before Old St. Nick arrives, don't turn away that friend or family member willing to help. Take them up on their offer to pitch in - they're looking for ways to help...simply show them the way.

And that goes for the grocery baggers of the world, too. If free assistance is offered when you're out and about, accept it. Your joints will thank you!

2) Ignorance - Sometimes, it seems easier not to know what you don't know, doesn't it? For me, insurance mumbo jumbo is just that - a bunch of mumbo jumbo. I know my way around an EOB (explanation of benefits), but when it comes to the finer details of my policy, I welcome Dick's explanation of what I'm getting and why. Once he breaks everything down for us, it's clear that it really IS better to be in the know. Not only are we able to figure out the best health coverage for our family, I'm armed and ready to fight for the benefits that we're entitled to...because I know what's covered and what's not. (Anyone with a chronic illness knows just how diligent you have to be when it comes to those insurance claims. It PAYS to know, I promise you that!)

And the same goes for the finer points of our disease. Take medication for instance: don't ask me why we're reluctant to ask the doctor for clarification regarding treatment or a prescription we're taking for our disease. We should know what we're taking and why, we need to know, but for some reason, we just don't ask. Maybe it seems too complicated to ask, but I can assure you - it's going to be a lot more confusing not to know what you're taking or why.

(Quick litmus test - check your list of medications. Is there one listed that you don't know the reason you're taking it? If so, ask the next time you're at the doctor. I know, I know - the reason might be to counteract the effects of another drug you're taking - but it's better to know that than not to know at all! How else are you going to assert yourself against your disease?)

Another finer point - our lifestyle: I can't tell you why we put our head in the sand when it comes to the obvious connection between our overworked body and our overactive immune system. Connecting the dots can be complicated, I know, and sometimes we don't want to own up to the factors that are causing our disease to flare (too much stress, too little sleep), but you owe it to yourself to know what helps and what hinders your body's performance.

Bottom line - don't miss even one opportunity to get a step ahead of your disease. Arm yourself with knowledge. It really IS everything!

Monday, December 6, 2010

A decade and counting...

I'm proud to say that Johnny and I celebrated our 10th wedding anniversary several days ago. Hard to believe it's been that long! We took a pass on taking a big anniversary trip abroad this year (postponed until next year when Bernadette's a little older and mom is a little more rested), but we enjoyed a wonderful evening out, thanks to Paola and my parents.

Of course, with 10 years of marriage, comes 10 years with lupus, given the fact that I was diagnosed just 6 weeks after our wedding. Back in the year 2000, we had the most wonderful Thanksgiving weekend wedding, thoroughly enjoyed the most spectacular honeymoon in Hawaii, and then within days of our return flight, my chest pain and other symptoms began. And boom...six weeks later, I had myself a chronic illness.

The cool thing is that I no longer think of my life as "before lupus" and "after lupus", even though I used to. In fact, I could have probably told you the days, hours and minutes I'd had lupus during that first year or so. But now, life is just "life" - and the blessed, abundant existence I have today is just as fulfilling and rewarding as it was pre-lupus, if not more so. I have two beautiful daughters under my belt, a handsome, loving husband who couldn't be more supportive, a book, a blog, a pug, and a wonderful circle of friends and family that I wouldn't trade for the world.

Today, I don't think of my life as a series of sacrifices, missed opportunities, or acts of desperation, as I did in the beginning years with lupus. Sure, there are compromises and negotiations that I continue to make, but those decisions fall in line with the way I want to live, despite my illness, not the way lupus forces me to live. No longer am I at the mercy of the disease, having to fight and claw my way through each and every day. The absence of pain is a glorious thing - and I continue to make choices to ensure that it stays like that.

So to Johnny - I say let's go another 10 years, squared. And to lupus - I say, "Bring it." I'm armed and ready to live well, despite you!

Friday, December 3, 2010

A lupus moment...

Chalk it up to a lupus moment, or too many drugs, or not enough drugs (!), but I want to make a clarification to something I recently mentioned during my interview on the online radio show, Your Life Matters.

I was talking about the recent genetic studies that have been done, and how they've helped us understand what causes lupus. I referenced an LFA chapter article which talked about the link between genetics, immunity, and environmental triggers, stating that, today, it is thought that lupus could be caused the following:

A genetic predisposition to an abnormal immune system, combined with an environmental trigger.

Fascinating, huh? Makes my approach to managing life with lupus all the more applicable, because as I say throughout my book - you can't control the disease, but you can control how you deal with it, i.e. reducing or eliminating environmental triggers that can cause the disease to flare. Because I was so fascinated with this most recent angle on the cause of lupus, I was eager to share it.

However, during my interview, I mistakenly called it, "a genetic predisposition to immunosuppression...", rather than saying, "an immune abnormality". OOPS! We don't have trouble with a suppressed immune system...we have a problem with an overactive immune system! I think I had all of the drugs we take to suppress our immune system on the mind - aptly named immunosuppressents - and misspoke.

If only we could bottle some immunosuppression, and drink it with a straw - then we might be in business!

Wednesday, December 1, 2010

Back on the air...

Despite Lupus hits the airwaves again!

Check out my most recent appearance on the online radio show, Your Life Matters, where I chat up hosts Jenn and Steve about my book and blog. This is the first time the show has focused on lupus, so the hosts were eager to know what lupus was all about, and what living with a chronic illness entails. Over the course of the hour interview, I gave them an earful. They asked, so I told!

Tune in today at - you might even learn something new about living well, despite lupus!