Friday, May 30, 2014

Lupus hair loss - satin pillowcase, anyone?

Well, it's arrived.

The hair loss I was expecting over the winter is officially here. I have now entered my fifth round of hair loss since I was diagnosed with lupus almost 14 years ago. I'm hopeful that this round won't rob me of every strand of hair on my head, but we'll just have to wait and see. So far, I'm just losing strands, not clumps, so I'm hopeful that it will be a slow and steady decline that stops before it's too noticeable. Until then, I'm going to take precautions.

1) I've stopped "washing" and started "patting" my hair clean. Forgoing a good head scrub in the shower definitely reduces the number of strands that come out on days that I wash my hair. It's always so disheartening to finger-comb conditioner through my hair, only to have a wad in my hand by the time I get to the ends. So to lighten the mood, I'll be forgoing the massage technique as directed on my product bottles, and simply go with the "pat and rinse" method. Strands, you can thank me later.

2) I've been drying my hair as infrequently as possible - again, because the number of strands that come out during the process is too alarming. So I'll be sporting the fresh-from-the-shower up 'do this summer. I've had to relinquish my oversized hair clips (which now slip out of my thinning hair), and have started using my smaller, daintier clips to create a swoop and go look. I blow out my bangs, throw on a pair of earrings, and everyone is spared. Particularly my precious hair.

3) I've started using a satin pillowcase. Believe it or not, this recommendation came directly from my dermatologist. I was using it even before the hair loss became significant, but I know it's helping. I recently changed the sheets on our bed, and put on a pair of high thread count cotton pillowcases that we used to use while the satins were in the wash. All it took was a nap and one night's sleep, and it was obvious the satin pillowcases help to keep my hair intact. I woke up both times to find strands all over my pillow. So out with the brushed cotton, in with the silky satin!

I knew that the hair loss was imminent - I had that familiar (yet dreaded) tingle on my scalp when I'd run my fingers through my hair, and I started finding strands of hair everywhere, particularly when I cooked (yuck!) and cleaned.

Now, the strands fall out all the time, but I'm hanging in there (as opposed to my strands, which decidedly are not.) No one can tell yet - except for Deirdre. We were playing hair salon the other day (gently, so as not to disturb my hair, of course), and she kept picking up strands of hair and moving them off to the side. I said, "Is that my hair, sweetheart? Sorry about that", and she responded, "Oh no, that's my hair. I'm sure of it. Just look how blond it is."

You can see her striking head of blonde hair here. But during beauty parlor, you can have whatever color hair you want, and as much of it as you need!

Wednesday, May 28, 2014

Following my lupus instinct - knowing when too much is enough.

About a month ago, I flew up to Boston to participate in Lupus Foundation of New England's Annual Symposium. I was looking forward to the event, and had worked closely with the Foundation's kind and understanding director on travel arrangements to make sure I didn't overdo. I couldn't very well make myself sick traveling to an event to speak about living well! The event was on a Sunday, and ran from 9-3pm (I didn't officially have to be there until 12pm), so I had options:

Option 1) I could fly in on Saturday evening, stay over in a hotel, wake up refreshed for Sunday's event and then fly out that afternoon, napping on the flight home.

Option 2) I could fly in early Sunday morning, participate in the event, and then stay over Sunday night, getting a real nap in a real bed, and fly out Monday morning.

I turned to my unofficial travel agent (aka Johnny) for help, and we decided on option #2. The way my lupus fatigue works, I tend to do okay even when I have to wake up early, as long as I'm able to catch up on a good nap in the afternoon. And if I follow it up with an early night to bed, I do particularly well. Option #1 (forcing me to miss a nap, even if I'd started the day rested) might have handicapped me for a day or two afterward.

So I went with option #2, and the Foundation was very accommodating.

The weekend of the event arrived, and I headed off to the airport on Sunday morning. I was tired, but not exhausted, and my adrenaline kicked in once I arrived at the event. I had energy to spare up until the close of the event. (My body seems to know when a nap is pending!) Then, as planned, I headed up to my hotel room, and sacked out for a solid 2 hrs. I felt fabulous once I woke up, and even better after I had a bite to eat. In fact, I felt so good that I thought to myself, "Do I feel good enough to just fly home tonight? I do. I DO feel good enough to just fly home tonight."  So as I sat there, in my hotel room bed, with the tray of finished room service in front of me, I convinced myself that in the next 60 minutes, I should make a mad dash for the airport, catch the next flight to D.C., and be home in time to get a good night's sleep in my own bed.

But as I made my way to the bathroom to freshen up and collect my toiletries, I started to lose steam. Like major steam. It was just after 5:30pm, and I'd woken up that morning before 6 am. I'd flown to Boston, made a Living Well presentation, kibitzed with program attendees for several hours, and manned my busy pillbag and book table at the event. Now, I was in the comfort of a hotel room, with a luxuriously quiet evening ahead of me, and I'm thinking about racing to the airport to do the travel thing all over again?


Was I really going to test the limits of my lupus body? Was I really going to second-guess myself (not to mention my husband, who is the best judge of how travel affects my body), and fly up and back in the same day? Was I really going to ignore the generosity of the Foundation, who had been so accommodating in making sure I traveled when and how I needed? Most importantly, was I really going to ignore all of the things I just talked about in my presentation - about doing what's right for your body, about pacing yourself, about embracing the disease, about working with it, rather than against it?

Of course I wasn't. I changed into my pajamas, crawled back in my oh-so-comfy bed, grabbed the book I'd brought, and settled in for a nice, quiet, leisurely evening by myself in the comfort of my hotel room. Just a few minutes before 8pm, I realized I was exhausted. So I pulled the curtains, turned off the lights, and went to sleep.

When I woke the next morning, I realized I'd just had the best 12+ hours of sleep I've had in years. And to think I was going to muck it all up by flying home early. I'm so glad I took a moment to think things through. I'm so glad I didn't allow myself to be fooled by my burst of energy after my nap. I'm so glad I had enough lupus years under my belt to know when to I needed to relax and recharge.

And I'm glad I know when I've done enough for one day.

Monday, May 26, 2014

LFA's Youth Lupus Experience - 6/7/14 in Indianapolis. What an event!

The Indiana Chapter of the LFA is hosting an upcoming youth event that sounds too good to pass up! The event, Purple for a Purpose Youth Experience, is designed specifically for children and teens who have lupus or have a family member with lupus. The event will be held on Sat.,June 7, from 11:00 am-2:00 pm at Riverside Park, 2420 E. Riverside Dr. in Indianapolis. Each lupus patient or family member of a lupus patient is invited to bring one friend.

There will be food, fun, activities, a fashion show, and a short lupus panel Q&A with a rheumatologist, a teen with lupus, and a teen who has a parent with lupus. The event is free but registration is required. Here's the flyer with additional details below. If you're in Indiana, I hope you can make it! 

Friday, May 23, 2014

Hosting my book club - a chance to chart my lupus progress!

A few nights ago, I hosted my book club (a group of 6-7 ladies) for our monthly meeting. I hadn't hosted since last September, and what a difference seven months makes!

The last time I hosted, I was a lupus mess. I had been in a flare for several weeks, had upped all of my medications, and was struggling to make it through each day. The joint pain and fatigue had reached an all-time high, so I knew I had to alter my lifestyle if I was going to make it through. That included keeping social engagements and dinner parties to a minimum...but I was determined to make my book club meeting an exception. Back in the fall, it was really important to my own emotional health and wellness that I be able to make it work, so I made some major adjustments so that I could do it: I ordered take out instead of making a slew of homemade goodies; I let the house look a little less than perfect without fretting about it, and I hired a babysitter to help right up until my guests arrived to make things as simple as possible. I even let my sister (and later, Johnny) do most of the clean up, because I simply didn't have the energy to make it happen. I had to take a few extra days to put the house back together, but I truly didn't mind taking it slow and steady. I felt no worse off than I normally it was a success in my book. I was just so happy to host!

Fast forward to this past week, and I was a hostess dynamo! Being flare-free, a lack of energy and increased fatigue weren't concerns at all. I was able to make everything from scratch - something that I love to do - and was able to experiment with new recipes that I'd been dying to try. I even threw in a last minute dessert because I was feeling so great and spontaneous (something I would NEVER feel mid-flare!) Of course, I made sure I had help cleaning the house the day of (thank you, cleaners), got in a solid afternoon nap, and prepped the night before and the day of to make sure that I didn't overdo it the night of the event.

But before, during, and after the meeting, I felt absolutely fabulous.  I was even able to tackle the dishes after everyone left, still getting in bed before my 10:30pm curfew. The most important thing? I woke up the next morning feeling just as great as I have been. And to top it off, I had just finished a 2.5 mg prednisone taper a few days before. Such a relief to feel so good!

Making a direct comparison from one hosting event to another made two things quite clear: first, last fall, I was pretty sick, and second, I've made some serious progress. Here's hoping I can stay on the straight and narrow to be able to host again, under the same great health conditions!

Monday, May 19, 2014

Experiencing lupus hair loss? Turn to a pet in your time of need!

Having a lovable, furry friend in the household has proven time and again to be good for our health. They can lower our stress levels, help stave off feelings of loneliness and depression (particularly when you're sick and stuck in bed), and encourage us to get the requisite amount of physical activity we need each day to stay well.

Of course, I've known this for years. Being a pug owner even before I was diagnosed with lupus, it was evident that my pugs were going to be instrumental in seeing me through the best and worst of my days with lupus. I mean, wouldn't you be a happier, healthier patient if you saw this adorable face staring back at you each morning?

I ran across two articles recently that echo these sentiments - one from the LFA DMV, illustrating just how beneficial it can be to have a pet, and another from Guidepost Magazine, specifically about the special relationship a lupus patient has with her beloved dog.

For years, Darwin (and his brother, Henry, may he rest in peace) have proven to be this lupite's best companion. Pugs love to sleep, they prefer to saunter, and they love to snuggle. Everything a flaring lupus patient needs! I've blogged about this subject before, but I recently came across another aspect of my life with lupus where Darwin has stepped in to ease the pain - hair loss.

Much to my dismay, I've started another round of lupus hair loss. I knew it was coming, but expecting to lose your hair doesn't diminish the fact that you're still losing your hair. So far, it's been very gradual. Thankfully, no one can tell that I'm losing strands by the hour, but that time may come. And that's where Darwin stepped in to help.

He's been shedding a ton lately, so about a week ago, I decided to give him a good, thorough grooming. And the hair literally just fell right off. It came off in little tuffs, then big puffs, and before you knew it, he and I were surrounded by pug hair. It made my daily hair loss look somewhat reasonable by comparison, and I have to say, it made me feel better about my situation.

And you should see his face as he's being brushed. He loves the attention, and the massaging techniques I use to rustle up those loose hairs must feel wonderful, because he simply can't get enough. Again, it forces me to think of my hair loss as more of a final cathartic cleansing - symbolizing the end of my flare, rather than a traumatic loss of self. I'm not happy about it, of course, but a grooming session with Dar sure helped to soften the blow.  

Friday, May 16, 2014

Mail-order prescriptions: Update #1 on Cellcept

A few weeks ago, I blogged about the incredible savings I was going to see by ordering my Cellcept prescription in a 3-month supply. The numbers were astounding to me - $400/month if I filled it monthly, vs. $100 total for a 3-month supply. Too good to be true, right?

Unfortunately, it WAS too good to be true!

I am sorry to say that I was misquoted. Not once, not twice, but three times by my drug prescription provider (aka the part of my insurance company that handles my prescription benefit). Turns out that Cellcept (generic name mycophenolate) is categorized incorrectly in their computers. It doesn't come up as a specialty drug - so the numbers I was being quoted applied to a regular run-of-the-mill drug, not Cellcept. In fact, once we figured out the glitch, the fourth person I talked to explained that when a drug comes up as "specialty", they aren't even allowed to run test claims to determine pricing, because the cost varies so much.

Here's how I found out:

When I went to pick up my cellcept prescription at my pharmacy (having confirmed not once but twice with my insurance company weeks before that the total should be about $100 for the three month supply), my beloved pharmacist, whom I know well, pulled me aside and asked if I was sure I wanted to fill the 3-month's supply. She said she was asking because the co-pay came to a whopping $1900! Eeek! Actually double Eeek!

I called the insurance company, and they told me that I could still get the $100 for the three month supply, but I had to mail it in to them. (Which, in the end, turned out to be incorrect also...but I'll get to that.) The problem with mailing it in, however, was that because I'd been told I could fill it with my local pharmacy, I only had a day or two until my prescription ran out. So allowing for the two weeks it takes for mail order wasn't going to be possible.

Thankfully, my local pharmacy said they'd do what they could to get me by until the medicine arrived, and the mail order company said they would rush it (of course, all for a fee.) I counted down the days until the mail-order company called to get approval on the co-pay and arrange shipping instructions. But when they did, I had another surprise. The co-pay wasn't the $100 I'd been was even MORE than my retail pharmacy. It came to $2100. Agggghhh!!

So now - I had actually increased the cost of the medicine by mailing it off, and I'd lost almost a week. What a nightmare! It doesn't get much better - because the insurance company simply said that, indeed, I had been misquoted (three times!), and they were sorry, but asked how I wanted to pay for the prescription. Seriously?

I weighed my options - and I chose to transfer the prescription back to my local pharmacy, pay for a one month's supply (still a whopping $650), and work on options for the future. I couldn't go one more day without the medicine, and I was catching a plane for Indiana the next day, and I couldn't leave without my pills. Plus, I'd had enough. I'd spent way too much time and energy over the past few weeks on the logistics of the whole thing, and I just needed a break.

Now - the promising news (I won't called it "good" because it's still unconfirmed), but my oh-so-helpful sister recommended I try Costco, and it looks like it may be the ticket. Online, the costs for 100 pills of mycophenolate appear to be $80. (I need 120 pills a month, but even double that dollar amount would be an improvement!) I called two different Costco pharmacies just to make sure what I was seeing online was correct, and I received two quotes - one for $80, and the other for $160. While the conflicting quotes are a bit disconcerting, it does indicate that there are savings to be had. And a good thing, too, as my local pharmacist warned me:  the cost through them this month was $650, but next month, it would increase to $750, based upon the way my benefit works. Fingers crossed that Costco comes through!

I'll definitely keep you posted. Look for an update #2 in the coming weeks. In the meantime, I'll work on releasing the negative energy I feel toward my insurance company. :)

Wednesday, May 14, 2014

Healthline's Best Lupus Blogs of 2014 - Despite Lupus makes the cut!

Thanks to Healthline for voting Despite Lupus one of the Best lupus blog of 2014. I'm so excited to be included. The other blogs listed are some of the best lupus resources on the internet today. I'm so honored to be among them!

Seems like just yesterday that I posted about being part of Healthline's 2013 Best blog list (because it practically was! They just announced that list in January.) If I have any chance of being considered for next year's list, I better get back to blogging, right?

With my recent speaking schedule, a welcomed succession of house guests, and a surge in pillbag business, something had to give. I was determined that it wasn't going to be my health, so I put off blogging for a couple of weeks. Good news is that I'm feeling phenomenal (my cellcept has kicked in - goodbye, flare!), and I have much to talk about. Can't wait to share it all!

In my travels, I met so many wonderful people, many of whom are devoted DL followers. Most of them had their favorite posts, or most pored-over DL subjects, but all of them said that along with the content of the blog, the comments were instrumental in helping them manage life with lupus. And the comments are all YOU!

Know that while the posts make a blog tick, the comments, interaction, and perspectives of the readers are what make it hum. So thanks to all of you for chiming in. I love hearing from you, and the rest of the lupus world does, too!

Friday, May 9, 2014

In Indianapolis for lupus awareness!

What a great day for lupus awareness! It was so exciting to join the LFA Indiana chapter at the Indianapolis State Capitol building for a fun filled event to promote lupus awareness. The LFA's Purple bus was there to provide a little lupus education, and I took the opportunity to tour it again. 

It was also "POP" - put on purple day, and I had the honor of speaking alongside Secretary of State Connie Lawson, First Lady Karen Spence, and  the State Health Commissioner, Dr. William Van Ness II. As you can see from the pics below, Dr. Van Ness and I also got to pose with the Indy 500 Race Princesses, along with the dynamic Jane Ferris, President of the LFA Indiana chapter. My mom joined me for the event and you'll see her below, too, touring the purple bus and signing a petition to support lupus. Go, Mom, go!