Monday, August 25, 2014

Finding flexibility in a lupus lifestyle. How far can you go?

"To push, or not to push, that is the question."

At least, that seems like it's the question. I've been feeling absolutely, positively fabulous lately. No swelling, no extra fatigue, and no pain. Not even a pesky stray digit that flares up when I don't eat quite right, or get enough sleep. Lupus has been as quiet as ever, and I'm completely thrilled about it!

In fact, I can even say that every few days, my afternoon naps don't seem quite as critical as they usually are. I still need one, that's for sure. But about twice a week, I a) don't feel fatigued until about 3:30pm, and b) I can get away with 90 minutes, instead of my regular 2 hours. I'm enjoying the flexibility - but I'm trying to figure how flexible I can actually be.

If you remember, this time last year marked the beginning of a flare - a long, nasty flare that had its ups and downs for almost eight months. It wasn't fun, and I have no intention of repeating that again.

But with the fall upon us, and Deirdre starting Kindergarten (eek!), we'll have a whole new routine in the Gorman household. Forget our leisurely 8-8:30am wake up calls. Now, we'll be getting up at 7am, to get Deirdre to school by 7:45am. She'll be in school until 3:10 pm most days, which will be an even bigger adjustment. We generally don't schedule ANYTHING between the hours of 2-4 pm (my sacred nap time), but now, we don't have a choice.

So the question is: can I push my nap everyday until 3:30pm in order to pick her up? Do we need to hire a babysitter after she comes home so I can nap? Will I actually have enough time to nap before she comes home, if Johnny and Bernadette pick her up?

These are the questions I've been considering, and I was having a tough time deciding what to do next. Johnny's on standby to do the pickup and help with Bernadette, but I really want to explore my options, if, in fact, I have some. Now that the Cellcept is working its magic, I don't want to assume that things have to stay the same.

So as I struggled with a plan of action, I considered how I would respond if a reader emailed me with this sort of question. And my answer would be something like this: Try it once. If it works, try it again. Just be sure to have a contingency plan in place for awhile, in the event that it doesn't work out so well. (It may work the first week you try it, but by week 2 or 3, the toll may start to become evident.) And don't get discouraged. Just because it doesn't work out completely, you may have discovered some other flexibility that you didn't know you had. And you can always try again in a few months.

So there. That's what I'm going to try. I'm not going to rearrange babysitting schedules yet, and I'm not going to commit to anything re: pickups. I'm going to run an experiment first, and see how it goes. I have a perfect opportunity for a mid-afternoon errand coming up, so I'll try it and will be sure to report back.

Whatever happens, I'm going to heed my own advice, advice that can be found in the Looking Within chapter of Despite Lupus. Here's the excerpt:


Imagine your life as one big theatrical performance (not too difficult, right?). You are, of course, the star of the show, and those close to you will be playing the requisite supporting roles. Now assign lupus a role in the production – that of stagehand. Lupus’ job is to be as inconspicuous as possible: to stay behind the scenes, disrupt nothing, and if movement is necessary, attempt to blend in with the scenery. You give this very special, important role to your disease, not because
you necessarily want it around, but because you know it’s not leaving anytime soon. Acknowledging that it’s a part of the play and giving it a job to handle will hopefully keep it busy and out of your way, allowing you to give your best all-time performance.

As you act out the scenes in your life, ask yourself the following: is what I’m about to do going to allow lupus to upstage me? Will my disease, who’s supposed to be waiting idly behind stage, have an opportunity to run across stage, leaping and bounding and causing a scene? For example, if you work extra late, or refuse to go to the doctor, will you be encouraging lupus to crash the scene? Keep these things in mind as you go about your daily performances and allow yourself to be the center-stager you’re meant to be!

Stay tuned to find out if my lupus is still eager to be center stage, or if she's willing to stay stage left for awhile. I'll let you know soon!

Friday, August 22, 2014

Your chance to support a great cause - VEDA t-shirts are calling your name!

Remember my friend Marissa over at She did the fantastic 12-12-12 Project, asking me to participate as one of the featured project members. She did the 12-12-12 project in an effort to get a little perspective on her own chronic illness - a debilitating vestibular disorder that basically leaves her imbalanced/chronically dizzy all day long.

In an effort to raise awareness, she's recently teamed up with VEDA - the Vestibular Disorders Association - to offer a series of pretty swanky t-shirts to raise money for the cause.

100% of the proceeds go to VEDA - so don't miss this opportunity to raise awareness for another relatively unknown chronic disorder!

Here's the link to the t-shirts, and here's the one I'm getting! Love the blue!


Monday, August 18, 2014

The Traveling Pillfold - Finding a soul mate at the zoo!

The girls and I traveled to Indiana last week to visit grandma and grandpa - and we decided to pay a visit to our furry friends at the Indianapolis Zoo while we were there. I had my Trocadero Pillfold along, and sought out the zebras to see how the design measured up. Looks pretty good to me!

        Deirdre and Bernadette holding down the entrance


Want to borrow my pillfold, Mr. Zebra? 

Wednesday, August 13, 2014

Celebrities with lupus: the list keeps growing!

Check out one of the latest list of celebrities who have bravely come forward to talk about the fact that they have lupus. Thanks to each one of them for revealing that they, too, battle with the disease. Seeing the word "lupus" in the news makes me feel part of something big - so I personally appreciate their efforts to make headlines!

Celebrities With Lupus

Source: Wikipedia
Braxton 5 Celebrities With Lupus: Kristen Johnston and More
Seal 5 Celebrities With Lupus: Kristen Johnston and MoreSource: Flickr

 There are seven celebrities listed in the article above, but from what I've seen in the news lately, we can also add Selena Gomez and Kristen Johnston to the list. Thanks, gals, for bringing attention to the disease! 

Monday, August 11, 2014

Which doctor to consult? Learning how to manage lupus symptoms and get results!

My rheumatologist is good at a lot of things. He manages my lupus care tremendously well. He’s proactive in his treatment, aggressive, but not overzealous when it comes to managing flares, and willingly accepts my input when I offer it up (which is all too frequent, I’m sure!) So when it comes to anything lupus related, my rheumatologist is undoubtedly my first stop.

But after 14 years with the disease, I’ve learned that while my rheumatologist needs to know everything about my lupus, he may not always be the best doctor to treat every symptom of my lupus. My hair loss is a perfect example.

My rheum was the first doctor I told about my hair loss, of course. But when it came to managing the fallout, considering a remedy to repair the damage, and working toward a solution to stop the loss, I sought out my dermatologist. He’s my go-to guy when it comes to hair loss, and I’m so glad he is.

When I went to see my dermatologist for the first time regarding the loss, he immediately sprang into action.  He did a thorough examination, openly discussed the damage as he was assessing it, which I like, and came up with a treatment plan. He suggested subsequent appointments to track the progress of the treatments as well as any additional loss. He discussed the type of loss I had, and the reason he was suggesting this particular treatment (a series of kenalog injections over the next three months.) We discussed the treatment, how it would help, and what I should expect. I asked what happened if the shots didn’t help, and we discussed that, as well. By the end of the appointment, I felt like I had a personal hair coach, a guy hoping and praying that my hair would grow back just as much as I was. 

I’ve since been back for a second appointment and injection, and when he confirmed that hair growth was evident, you could visibly see his excitement. He had nothing but praise and encouragement for me, and suggested that I judge the progress over the next two months for myself. If I need to see him, I should come in. But he was hopeful that I’d be well on my way to spiky regrowth by then. How motivating!

After that second dermatologist appointment, it came time for my regular rheumatologist appointment. I was going to be sure to update him on all that had happened regarding my hair loss since I last saw him three months before. But before I did, I was sure to manage my expectations. I knew I wasn’t go to get the same encouraging, engaged reaction that I did from my dermatologist, and I was right. I got a “Really?”, and a "Hmmm." And later a “Where are you losing it?" When I lifted up my strands to show him, he didn’t seem very impressed. In fact, I think he would have dismissed it completely had I not elaborated on my dermatologist’s treatment.

A few years ago, I might have been rattled by his reaction. But not now. From my rheum, I wasn’t hoping to accomplish anything more than to have a note added to my file. And note it, he did. (He actually asked about other hair treatments as he was noting it in the end - which was good. That's HIS strength - making sure he covers his bases during the recap.)  

And when I left his office, I wasn't feeling dejected because of his reaction. Rather, I felt empowered, because I had once again learned how to utilize my team of doctors to get the most effective health care possible. Both of my doctors are fabulous physicians, but playing to their strengths makes them both come out smelling like roses. 

Wednesday, August 6, 2014

#pillfoldtrending #bordeauxthenewtopseller #thankyourosie

Just a wee bit excited about Rosie O'Donnell talking up my pillbags on Twitter. She took great photos of her Bordeaux Pillfold. Don't her meds look oh-so-stylish in there?

Best travel pill organizer - ever

Paving the way for a good spa experience - lupus in tow.

Setting myself up to succeed - what a valuable tool for making life with lupus easier! Over the years, I've been amazed at how many opportunities I have as a patient to make my life a little more bearable and a lot more enjoyable. Maybe it's prepping for a conversation with the doctor, so that my appointments are more effective. Perhaps it's managing someone else's expectations in order to avoid disappointment (mine and theirs) before it occurs. Or maybe it's making a good lifestyle choice that literally diminishes the chances of a flare. Whatever the instance, I like to think that I can obtain more of the results I want, and less of the baggage I can do without, simply with a little planning and forethought.

I wrote about an instance where I unfortunately failed to do this very thing back in March. That particular situation involved a visit to the spa, when I hesitated to discuss, in detail, the ins and outs of my disease before my treatment provider began the service. It wasn't an all-around bad experience, but it could have been better. I could have warned her of the sensitive areas to avoid, thus eliminating swollen joints, glands and lips. If I'd spoken up, I imagine my post-treatment experience would have been completely symptom-free. As it was, I spent the evening nursing my joints, icing my angioedema lip and swollen glands, and hoping the effects would wear off by the next day. But I learned from that experience, and most importantly, applied what I learned the next time I had the opportunity to change the outcome. That chance came earlier this summer. And boy, did it turn out well.

My second trip to the spa in June was glorious. I was feeling good, as my body was healing from the flare, and responding well to Cellcept. But I knew it was important not to push my body beyond its limits. It was even more important that I set myself up to succeed. I needed to put a little thought into the service I was going to choose, the details I was going to mention to the treatment provider, and the areas that should be avoided. If I’m not going to step up and protect myself from lurking lupus activity, who will?

So here are the three things I did:

1) I decided that instead of an all-over body treatment, I'd opt for a facial. As good as my joints were feeling, and as unswollen as my lymph nodes had been, I just didn't want to aggravate either by having someone massage my body. So a facial was booked.

2) I took PLENTY of time and used considerable detail when I described my disease to my treatment provider. I knew a facial would still include a neck, hand, and foot massage, so I told her about my sensitive finger that was swollen earlier that day, and the swollen glands behind my neck, pointing out everything so that she could see and feel the areas to avoid. We agreed that she wouldn't even use gentle massage on those parts - better to just avoid them altogether.

3) I also decided to pass on the head massage - which is usually my favorite part of any spa service. Why? Because of my hair loss. The last thing I wanted to do was to spend the majority of my treatment worrying about how much hair would fall out, how she would react, how I would explain it, or how deflated I would feel, knowing that I had that much less hair on my head. So I told her to skip it - and it was the best decision I made. I didn't miss it at all, because I was too busy relaxing during the rest of the treatment to think about it.

I truly set myself up to have the best experience possible - and it worked! 

Friday, August 1, 2014

Lupus treatment: Being open to change

My daughter Deirdre is five going on 15. She is a precocious little lady - and makes me earn my parenting badge on a weekly basis.

Of course, I love her dearly, and appreciate the challenge of staying one (or three) steps ahead of her. Though, some weeks, it's not easy.

Recently, I've found the need to switch up my parenting tactics all too frequently. Whether it's reminding her to be kind, empowering her to make good decisions (particularly before she makes a bad one), or helping her work through her frustration, I found my strategies one week aren't necessarily going to work the next. I remember this being the case when she was in her two's and three's, too - although today, there's a lot more sassiness to deal with. (Where DOES that come from?)

The good news is that despite the continuous need to tweak my tactics, I can see progress being made. As opposed to her three-year-old self, I can see how the strategies from one week build to the next. If, in week one, she screams, yells, and stomps off because she's been asked to do "X", the following week, she employs the response tactics she learned the previous week ("think before you react, take a deep breath"), and there's no screaming or yelling - just a little stomping. In place, even. It's not perfect, of course, but it is progress. And don't all parents love progress?

As I continue to craft new ways to help Deirdre help herself, I'm reminded that the way I treat my disease might have to change over time, too. As evidenced by my Fall 2013/Winter 2014 flare, the old stand-by of increasing my prednisone isn't always going to work - and I need to be a little quicker to accept that fact. My doctor even suggested that we switch tactics after a few months, but I was a hold-out. Increasing my dose of steroids had worked early on in the flare - shouldn't it just work again? Shouldn't we just keep trying? Can't we just make it work?

Of course, I finally came around, realizing that my treatment DID need to change, and I'm happy and healthy now that Cellcept has been added to my medication regimen. (My pillfold was happy to have a newbie in the group, too!)

You can read about my desire to stick with prednisone here. While I know it was an important part of my journey, I'd like to think that I'll capitulate a wee bit earlier next time and start the stronger medication sooner. I know that my winter could have been a heck of a lot less painful had I done so.

So just as Deirdre will continue to build on her interpersonal skills, I will continue to hone my treatment-discerning skills. I welcome the chance to work side by side this cutie pie.  Wouldn't you?