Monday, March 31, 2014

Andre Agassi's "Open" : A good read, and his hair travails revealed!

Based on a recommendation, I recently read "Open" by Andre Agassi, which I thoroughly enjoyed. I've never been a huge tennis fan, but I often watched Agassi's matches alongside my high school tennis-playing friends. 

In his autobiography, Agassi talks about his hair. That famous hair that came...and eventually went. He talks about the moment when he decided to shave his head, which was at the insistence of Brooke Shields, whom he married (and later divorced). Here, he describes the moment of truth - the moment when he looks in the mirror for the first time after shaving off his hair: 

***
"I walk to the mirror. I see a person I don’t recognize. Before me stands a total stranger. My reflection isn’t different, it’s simply not me. But, really [what] have I lost? Maybe I’ll have an easier time being this guy. All this time with Brad (his coach), trying to fix what’s in my head, it never occurred to me to fix what’s on my head. I smile at my reflection, run a hand over my scalp. Hello. Nice to meet you.

I feel exhilarated, and heavily indebted to Brooke. You were right, I tell her. My hairpiece was a shackle, and my natural hair, grown to absurd lengths, dyed three different colors, was a weight as well, holding me down. It seems so trivial – hair. But hair has been the crux of my public image, and my self-image, and it’s been a sham.

Now the sham is lying on Brooke’s floor in tiny haystacks. I feel well rid of it. I feel true. I feel free."

***

If you've been there - you know that he did a great job of capturing the essence of that moment. That moment when you're not quite sure who the person is you see reflected in the mirror, but you know it's the start of something new. And different. And better. And then the liberating feeling of having let your hair go, once you've had a few moments to sit with the "new you". That wonderful feeling of starting over, of starting anew. And as he says, of finally being free.

You can read about my own liberation here, parts 2 and 3!


Friday, March 28, 2014

What's a Pillpouch, and how does it work? Pillpouch how-to video to the rescue!

Here's my second Pillbag how-to video - explaining how a Pillpouch works and why I needed a better solution for organizing my pill bottles. I bet that clear plastic bag looks familiar to a few of you out there! 




I also thought I'd include a picture of another sad, little bag I used to use to corral my pill bottles, pre-Pillpouch. This old toiletry bag had seen better days. It was ragged, overstuffed, and ugly - I knew there had to be a better solution. Let me ask - would you rather carry this:



Or this:







Wednesday, March 26, 2014

Lupus hair loss: playing it safe or living in fear?

As many of you know, I am no stranger to lupus hair loss. I've actually lost my hair multiple times due to my illness. Some bouts I would categorize as drastic hair loss, others I would put in the significant thinning category. Every time I start to lose my hair, I'm never sure what the cause is - I just know I want it to stop. My theories for causation in the past have included medication (like heavy doses of intravenous steroids in the hospital), severe anemia, or just severe symptom activity. (Dr. David Fiorentino does a great job of answering the question of causation in a string of Q&A on lupus hair loss found on the LFA website. Click here to check it out. I like his answer to question #2 in particular!)

You can read about my personal hair loss stories here, but as far as damage control, I've tried everything. I've gone short, I've kept it long, I've wound stringy strands around my head to mask bald spots. I've used product, and then not used product. I've worn hats, played up my jewelry, all in an effort to preserve my precious, thinning hair, or at the very least, detract from it. I've shed many tears over my hair, too.

But not last week. Last week, I decided to be bold. I decided it was time to cut my hair. I've been letting my hair grow all winter long, primarily because I was enjoying my long, thick, healthy locks. (When you've experienced thinning, wispy, stringy locks before, you know when to celebrate how good you have it.)  But I was also holding onto my hair out of fear. Because I've been contending with this current flare since August, I was playing it safe, just in case my increased symptom activity decided to set off a round of hair loss. But I decided that playing it safe for too long can be detrimental. I was no longer just being conservative, or preemptive. I was actually being fearful. Month after month, I was setting myself up to anticipate the loss, to fear its imminent arrival. But now, after almost 6 months, it's time to get back to living. Proactively. With lupus in tow.

Regardless of what this current flare decides to do, I needed a style change. If I do end up losing a ton of hair due to lupus, I might as well get used to having a shorter, newer 'do anyway. Thankfully, my girlfriends came to the rescue, and on my recent girls' weekend, we scoured the internet for just the right picture of what I wanted. I didn't go drastically short...just above my shoulders to cut off about 3 1/2". But it's new, and different. And it's me. It's not me keeping my hair long for lupus. It's me cutting my hair because I wanted to. And if lupus decides to take a few strands here or there - so be it.

After all, I have a brand new hair 'do to enjoy.

Monday, March 24, 2014

Take a Nap! (At least Michelle Petri says so)

Dr. Michelle Petri, one of the most formidable lupus doctors in the world, says that because of lupus fatigue, you may need to take a nap in the afternoon. She says if your body tells you to nap, you need a nap. So take the nap, she says. Direct orders from the doctor! Her advice came during her informative and enjoyable presentation at last year's LFA Annual Maryland Summit at Johns Hopkins in Baltimore. Be sure to mark your calendar for this year's event - Saturday, Sept 13, 2014, and view details here. Dr. Petri will be returning as a presenter, and I'm sure she'll still be encouraging us to nap!

On the heels of doctor's orders, I thought I'd share this article on napping. I enjoyed the article - but noted that some theories and/or strategies simply don't apply. For those of us who rely on upwards of an hour nap to fight lupus-induced fatigue, the theory that a 10-minute nap is ideal just won't work. But there are still some interesting take aways, including the selection I've pasted below, showing that an hour nap is ideal for memory and learning. Read that snippet below, and you can read the entire article here.

***
In a 2012 study in the journal Neurobiology of Learning and Memory, researchers split 36 college-aged students into three groups. Each group learned a memory task, pairing words on a screen with a sound. Afterward, one group had 60 minutes to nap, another 10 minutes. The final group didn't sleep.
Upon retesting, the napping groups fared better, as expected, said Sara Alger, lead author of the study and a postdoctoral research associate at the University of Notre Dame.
More interesting, she noted, was that on further testing, including a week later, the 60-minute group performed far better than the 10-minute group, which now performed as poorly as the non-napping group. The researchers concluded that slow-wave sleep—only experienced by the 60-minute nappers—is necessary for memory consolidation.
***


Friday, March 21, 2014

What's a Pillfold, and how does it work? Pillfold how-to video to the rescue!

I can't believe I have yet to post my Pillbag videos on my blog! I produced these several months ago, right before Thanksgiving at my in-laws. My tech savvy and social media guru brother-in-law had roused me enough at last year's holiday gathering about not having a pillbag how-to video, that there was no way I was going to show up sans videos. Eat your heart out, Tub Rock...and thanks a million for the push. I needed it!




Wednesday, March 19, 2014

A lupus moment - letting the tears come (and go) as needed.

Some days with lupus just seem tougher than others: mornings that seem to last a lifetime, hours that never end. Minutes that seem more unbearable with each second that goes by. And instances where you simple can't take it any longer.

Two weeks ago, I had one of those moments. 

We were driving home from my doctor's appointment, having received the fabulous news that my swollen lymph nodes were nothing to be alarmed about. Johnny was driving, because for some reason, my prednisone from the night before and the morning of hadn't kicked in yet, and my joints were aching (not agonizing pain, but definitely present.) We'd decided to run two errands on the way home - as if we were making the enjoyment of finding out that I didn't have a tumor, cancer, or lymphoma last as long as possible. 

First stop was coffee for Johnny and me, and a muffin for Bernadette. (Dee was in school.) Normally, Johnny would have pulled up to the coffee shop, and I could have jumped out, grabbed the goodies, and hopped back in the car. But there was no hopping anywhere for me today, given my joint pain. So Johnny happily parked, ran in, and returned in no time with our stuff. 

Errand number two was to drop off something at the printer for his business. Again, normally he'd pull up to the print shop, I'd hop out, and be back in a flash. But not today. He parked without a second thought, and we watched him run in to drop off the stuff. While Bee and I were waiting in the car, a woman about my age started to cross the street in front of us. Another car was pulling out, so she quickly picked up speed and jogged across the street, in skirt and heels, to the other side. It caught my attention, because her face showed no pain or strain at all. She wasn't wincing, nor struggling in any way. And I thought about how pain-stricken my face would look today if I'd jogged the few steps she'd just traveled. Yesterday, I'd run a mile and a half on the treadmill. Today, taking a few steps would have felt like death.  

Johnny returned to the car, and as I sipped my coffee, I found myself not being able to handle it, for even one more moment. I was just sad. I was sad to be in pain. I was sad to not be able to move freely. I was sad about having lupus. And the tears began to well up. 

As the tears fell quietly and unbeknownst to my family, I reached out and put my hand on Johnny's. I was immediately reminded of his loving care and gentle touch. I heard Bernadette's sweet little voice in the background, as she serenaded us with "Let it Go" as only a three-year-old can. I thought about the good news of my lymph node biopsy, the promising effects of my cellcept, and the love and support of my family. And just as quickly as the moment of unbearableness had come on, it left. My eyes dried, and feelings of resiliency and strength returned. 

I concluded that it's vulnerable, heart-wrenching, tearful instances like these that allow me to realize that life with lupus is going to be okay. That the good moments truly do outweigh the bad. And that the worst ones only make way for the better. 

Monday, March 17, 2014

The themes of systemic lupus - I think they're spot on!

I love the findings in this latest investigation into lupus! It's so refreshing to see the issues that are oh-so-present in my daily life with lupus grouped and identified accurately, and then spelled out in black and white. And I particularly appreciate that the research produced two positive responses to life with lupus, particularly the concept of Gaining Resilience, which I have found to be invaluable in my 13 1/2 years as a lupite. Check out some of the snippets I've included below, but be sure to read the entire LFA article here. The entire article explains in detail the factors that contribute to each of these concepts. I'm sure you'll find yourself nodding along as you read the examples! 

***

Adults With Lupus Found to Have Common Themes in Experiences
A recent review of lupus quality of life studies found five common themes that describe the experiences of adults living with lupus. Using a method called thematic synthesis, Dr. Allison Tong of the University of Sydney and her associates from Australia were able to group the responses of nearly 1,400 people from 46 studies into five concepts:

Restricted lifestyle

Disrupted identity

Societal stigma and indifference

Gaining resilience - (a positive!)

Treatment adherence - (another positive!)

Restricted lifestyle related to factors that interfere with daily activities and mood. Disrupted identity resulted from the uncertainty or emotional burden of lupus. Societal stigma and indifference developed when others trivialized the illness, when patients felt ostracized socially, or when family and friends became overprotective or intrusive.

Gaining resilience was built on optimism acquired when patients accepted their limitations and developed positive attitudes to cope with their new reality. Emotional and physical support offered by family, friends and doctors also helped people with lupus to live a ‘normal life’. They felt more in control and empowered when they remained active and socially engaged. Being informed and involved about the impact of lupus, along with the mutual understanding of others who shared similar experiences of living with the disease, was found to be important to gaining resilience. Treatment adherence improved when people believed the medications they were prescribed were having a positive effect on preserving health, while good rapport with doctors boosted adherence as a show of respect and trust.  

The investigators conclude that education, psychosocial (offering social and emotional support) and self-care programs will help to improve the mental resilience of adults with lupus so they can develop better methods to cope with the disease, advocate for themselves, and increase their participation in activities of daily living. These factors will help people with lupus achieve better treatment and secure the best possible quality of life. 

***

Friday, March 14, 2014

Lupus lymph node - a biopsy fire-drill

A little over a week ago, I recounted the details of my most recent doctor's appointment. To my relief, he put me on CellCept, changed up my prednisone, and altered my plaquenil. It was a busy appointment with a lot of changes...but all moves in the right direction. There was another aspect of the appointment that I haven't blogged about yet, and that was a lymph node biopsy that I was undergoing a few days later.

As many of you know, swollen lymph nodes can be a common symptom of lupus. In fact, when I'm in a flare, my lymph nodes almost always swell. Sometimes, that's one of the first signs that I'm getting sick. I'm never overly concerned when they do swell, but I do take note, and always bring it to the attention of my rheumatologist. And that's just what I did last September, at the start of this flare. The lymph nodes under both armpits were swollen, and my rheumatologist concluded that indeed it was something systemic because it was under both arms, so I wasn't to worry, given my current state of active disease. (Please consult your doctor for your own personal diagnosis.)

The fall came and went, and so did my swollen nodes. But around New Year's, I noticed that one and only one node in one armpit returned swollen. I didn't think much of it, but planned on telling my rheumatologist when I saw him again in about 2 1/2 months. But the node kept getting larger, and I had no other swollen nodes anywhere, which is kind of odd for me. After about 5 weeks of watching this swollen node grow, and still 6-8 weeks away from my scheduled rheumy appointment, I made a next day appointment with my primary care physician. She concluded that that, indeed, the node was probably lupus-induced, but she thought I should have an ultrasound just in case. I agreed.

I went for the ultrasound, and as the sonographer took her first shot of my armpit, she immediately said, "Wow! Have you been sick or something?" I guess she saw multiple enlarged nodes, and they took her by surprise. (In my book, the multiple swellings were mostly good news, because that meant my one troublesome guy wasn't some weird aberration, but the results were still sent off for evaluation.) I heard from my PCP a week later, who asked me to schedule an appointment with a general surgeon to have my results evaluated.

I did that, and in the meantime, several other swollen nodes popped up - littered around the back of my neck and ears. (Again, good news to me, this being one of the first and only times that I wanted signs of more lupus symptom activity to surface!) Once at the surgeon's office, he did a physical exam, and confirmed that there were even more swollen nodes under my other armpit. While he was fairly confident that all of the nodes were enlarged due to lupus, he still wanted a biopsy to make sure. He said given my use of heavy immunosuppression like Cellcept in the past (his words, not mine), and because I was about to start another round of Methotrexate or the like (turned out to be CellCept, as you know), he thought it was a good idea to be sure there wasn't anything abnormal at play. I pushed him a bit, asking if a case could be made to by-pass the biopsy, but he said in this situation, it was best to move forward. (My rheumatologist agreed, although he, too, was fairly certain we were fine.)

So - I went for a biopsy. It was my first biopsy ever, which made it a bit daunting, but still, I was 90% sure we were still just dealing with lupus. As you can imagine, though, my family and I wanted to be 100% sure. We waited a week after the biopsy before returning to the surgeon. And thankfully, he confirmed that, indeed, there was no sign of tumor, cancer, or lymphoma at all. Hooray! After I gave a big sigh of relief, he wanted me to be sure to monitor my swellings. If my flare subsides, and the nodes are still swollen, he might want to see me. And if additional nodes continue to swell, he may want to see me.

But it's good news in the Gorman household for now!

As always, please consult your own physician before concluding how your own swollen nodes might pertain to your lupus disease activity. And if they ARE swollen, and you haven't told your doctor, make sure you bring it to his attention!

Wednesday, March 12, 2014

New Lupus Dutch Documentary - "I used to dance" by lupus patient Femke Kramer

Lupus is about to take New York by storm.

The world premiere of the dutch documentary "I used to dance", a powerful film about living with lupus, will take place on March 14th at the Quad Cinema. I haven't seen the entire film, but the director and subject of the piece, Femke Kramer, who suffers from lupus, appears to have outdone herself. The film is said to transcend the one-dimensional patient film, depicting the layered, complex, often painful existence of life with lupus. The struggle to cope, the battle to manage the physical and emotional - it's all there. I admit that the first time I saw the trailer, I winced...and struggled to accept that the images I was seeing could be attributed to the same disease that I have and write about. But then I watched it a second time, and then a third. And now, I'm ready to see the film. I'm ready to associate pictures to the honest, often harsh words I use to describe lupus every single day.

"I used to dance" won a 2013 Merit Award of Awareness at the Awareness Festival in Santa Monica (www.awarenessfestival.org) & was nominated for a Golden Calf best short documentary at the Dutch Film Festival (www.filmfestival.nl) and has also been selected for Image Sante, the international Health film festival in Belgium. You can follow the Facebook page here.

Click here to see the trailer, and I'll be sure to let you know once I catch the entire film!

Friday, March 7, 2014

Lupus Recovery Mode: The value of doing nothing

In my book, Despite Lupus, there's a section about learning to compromise, a must when it comes to living well with lupus, in my opinion. Specifically, I talk about the ability to indulge every once in awhile in an activity that might be a little outside of your normal "lupus" routine, as long as you're willing to put in the extra downtime to allow yourself to recover. We're not talking about anything that would be dangerous to your health, or one that puts you at risk. Rather, we're talking about deliberately choosing to do something that might be a teeny bit taxing, but puts a smile on your face. Here's the excerpt:

***
Indulge, but wisely

A friend of mine was struggling with the sacrifices that lupus was forcing her to make, like reducing her sun exposure and restricting her activity level. She had a chance meeting with another woman who had grappled with the same things, but who had come to the following conclusion: indulging every once in awhile in an activity that is deemed “off limits” is okay if you allow yourself ample time before and after to recover. This woman happened to be an avid tennis player and it was causing her more stress and anxiety to miss out on a match than to deal with the effects of playing one. Given that her body was more fragile and prone to exhaustion with lupus, she realized that if she took it easy the day before and after she played, she could enjoy her pastime and not put her health at risk. As long as you’re willing to compromise, you can enjoy doing just about anything.
Keep in mind that a compromise like this one should be viewed as an indulgence, not an invitation to develop a routine. Don’t let the thrill of the experience convince you otherwise. Just like eating a cookie on a diet, it’s not the one cookie that does you in. It’s getting a taste for it and wanting a second, if not a third. 

***
Along these lines, I decided to indulge this past weekend, by throwing a dinner party. We haven't had friends over for dinner in a long time, for obvious "flare" reasons, but I decided I was up for trying. I promised Johnny (and a few of my guests) that we'd order take out or cancel if I needed to at the last minute. But I ended up feeling fabulous leading up to the big night, and the evening went off without a hitch. It was relatively stress-free - the house cleaners had come the day before, I'd casually prepped the sides and dessert during the week, and Johnny took care of making the main dishes. We all had a fabulous time.

But, as expected, the extra hours on my feet, and even the minimal amount of prepping, serving and "hosting" took its toll. By the end of the relatively early evening, my knees were swelling by the minute. I felt fabulous, but my knees and ankles said otherwise. We said our goodbyes, and even though we had a mountain of dishes to tend to, I went straight up to bed. I even coerced Johnny to come up and lay next to me so I wouldn't feel like I was missing out on our typical chit chat as we tidied up after a party. The next morning, my knees were better, but I felt the effects of a long, yet fun evening. So I took it easy. All. Day. Long. I stayed in my pajamas, drank plenty of tea, and did a lot of lounging. Johnny, superstar husband that he is, cleaned up every last pan, filled and ran the dishwasher twice, and left the whole place looking good as new. All the while, I leisurely read books to the girls, sipped hot beverages, and allowed my body to recover the way it needed to.

When I woke up on Monday morning, feeling fabulous, without a shred of symptom activity, I turned to Johnny and declared the weekend a success, due in part to all of his help and assistance. In fact, I asked him if he thought it was fair that I'd scheduled the get together, asked people over to the house, just to have him end up cooking and cleaning and running the whole thing. He said he had a swell time - and that he would do it again in a heartbeat.

We'll wait a few heartbeats, of course. After all, it was an indulgence, not an invitation to go crazy!

Monday, March 3, 2014

Back to the basics, a.k.a. what I can do, now that my prednisone has kicked in!

Relief at last! Per my post on Friday, not only did my doctor add Cellcept to my medication regimen at my most recent appointment, he changed up my prednisone a bit, giving me instant relief in the mornings. He suggested we add 2.5 mg to my daily dosage, and that I take that 2.5mg at nighttime. I'm to continue administering the 5mg I've been taking daily in the morning. It seems to be just the right combination to get me through until my Cellcept takes effect. We're taking it one day at a time, but things are looking good!

Now that I have the functionality of my joints back (particularly my hands) between the hours of 8am and 1pm each day, there are a few things that I need to tend to. Granted, I won't be engaging in any four-hour calligraphy sessions - just getting back to the basics of my day. Here's what I'm going to tackle: 

Sewing: My family's garments appear to have gone downhill since my joint pain flared! At last count, Bernadette's winter coat had all three snaps missing (both sides of each snap, in fact) - leaving her with absolutely no way to close her coat. Eek! Thank goodness she has a heavier coat that's been able to get her through. One of the three snaps fell off earlier this winter, so I seized the chance to sew it back on during the end of my 10mg taper. (I had three days when I was completely pain-free, before I went down to 7.5 mg, so I tackled it then). Unfortunately, two weeks later, it came off again. At that time, I was knee deep in steroid withdrawal, and couldn't find a pain-free moment to work on it. Sure, between 5-8pm I was feeling pretty nimble...but sewing was the last thing I could tackle during the dinner/bedtime routine, as you can imagine. But now - I have my needles and I'm ready to sew. Bernie's coat, along with a couple of items for Deirdre and Johnny, will be back in action, just in time...for Spring. 

Eating my choice of breakfast: My favorite cereal, Oatmeal Crisp, has had to take a back seat during the last month or so. Most mornings, I was waking up with terrible joint pain in my jaw, and the crunchy, albeit delicious cereal was just too much for my jaw to handle. I'd resorted to pancakes, smoothies, and eggs, which aren't bad alternatives. But I was craving my fave cereal and the ability to crunch away. Now I can!

QC'ing my Pillbags - While the ease of the zipper pulls makes the pillfolds ideal for arthritic hands, I found that doing efficient quality control on 150+ pillfolds wasn't quite so easy! I had a huge shipment of inventory arrive just after Christmas, but I haven't had a chance to check them because of my joints. Even checking 10 of them adds up to 80 zippers at a time - which can be too much for really swollen digits. But now that my fingers are up to it, I'll be checking those bags in no time, and getting the Pillbags stocked and ready for Mother's Day.

Buckling the car seat - I temporarily offloaded the buckling of Bernadette's car seat to Deirdre, and it was wonderful of her to step up to the plate. It usually added 5+ minutes to our departure time, however. The girls would get to giggling, or Bernadette would want to do half of the buckle, or any number of distractions would occur, so it wasn't quite as seamless as it could have been. I figure I'll let Dee and Bee continue to help now and then, but it will be nice to resume the responsibility and make an attempt to leave on time. (Note that buckling a 5-point harness car seat could have been the single, most painful action required of me each morning. It was murder on my joints. I'm sure many of you can identify!) 

Doing hair - The hair styles of the Gorman girls have probably taken the biggest beating during this flare. I haven't used the flat iron on my hair in a long time, and the few times I have, it was conveniently before going out for the night, during my prime pain-free slot of 5-7pm. And Dee and Bee have had to forgo what they call their beloved "Elsa" hairdo - a side winding french braid that ends in a bun. But my magic styling fingers are back, so the ladies of the house will look ravishing once again! 

***

There are a few things that we actually won't be going back on. Here are the workarounds that are worth keeping, among others:

Dee and Bee will continue making their lunches - I would never force the girls to make their own sandwiches, but they really seem to enjoy eating their own creations. And, given a little guidance, they do a pretty darn good job. I've started doing it more often than I was, but I'll continue to take a back seat as long as they'll let me. Watching Bernie spread peanut butter is one of the cutest things ever! 

Going to bed at 10pm - A ten o'clock bedtime really seems to work well for me. It does cut short our evening a bit, but we've pretty much adjusted to doing all we need to between by 10pm. It really has been an improvement in my routine, so the early bedtime stays.