Wednesday, February 25, 2015

Despite Lupus Radio Interview on Conversations in Care


Thanks goes out to Tami Neumann at Conversations in Care for a great interview this morning! I thoroughly enjoyed being on the show - and look forward to the next opportunity to chat. Great questions, great host. Would love to do it again!

You can listen to the interview below, or follow this link. We touched on some great issues - asking for help, managing the doctor/patient relationship, and dealing with the loss of control after a chronic illness diagnosis. It's all in there - a packed 30-minute interview!


Check Out Health Podcasts at Blog Talk Radio with Conversations In Care on BlogTalkRadio

Monday, February 23, 2015

Despite Lupus hits the airwaves again...with Conversations in Care this Wednesday!



Be sure to tune in this Wednesday, February 25th, at 10am as Despite Lupus joins host Tami Newmann on her award-nominated radio show, Conversations in Care

I'm looking forward to talking with Tami, and covering all things lupus, chronic illness, and beyond. She broadcasts from CST time zone, so note that the show runs at 9am CST/10am EST.

Here's all the information you should need. Feel free to call in and ask your questions. We'd love to hear from you! 

WHEN IS THE SHOW?: The show airs live at 10 AM EST on Wednesday, February 25th. 
HOW CAN I TUNE IN?: You can listen online by clicking here
HOW CAN I ASK MY QUESTIONS?: Simply call into (646) 478-4343 and ask away!

Thanks so much for joining me on the airwaves. Talk to you then! 

Friday, February 20, 2015

Shortage of my favorite Hydroxychloroquine, brand name of Plaquenil?

I recently heard about a possible Hydroxychloroquine (Plaquenil) drug shortage, and thought I'd post.

First and foremost, please don't panic. I know that Hydroxycholoroquine is typically a lupus staple, and many of us (and our doctors) don't know what we'd do without the drug. I just wanted to poll the readership to see if any of you have been affected, and whether some areas of the country are having more difficulty than others. I just refilled my 3-month prescription in January, with no trouble. Hopefully, the issue will resolve itself soon!

Feel free to email or comment if you've experienced trouble filling your prescription, and if so, tell us what you and your doctor or pharmacist have done in the meantime. (We're solution-oriented here at Despite Lupus!)

Here's a link to the Lupus Foundation of America's article on the drug shortage, and here's a snippet of the story:

***


We have heard reports throughout the country that individuals have been unable to obtain hydroxychloroquine, the generic form of the drug. According to the FDA, a generic drug is identical, or bioequivalent, to a brand name drug in dosage form, safety, strength, quality, performance characteristics and intended use.

There are also reports that the price of both the generic and brand name forms have increased dramatically. Several manufacturers of hydroxychloroquine have told us that the cause of the shortage is due to an increase in demand...The FDA has not formally added hydroxychloroquine to its list of drug shortages, but the FDA works closely with the American Society of Health-System Pharmacists (ASHP) and directs individuals to ASHP to receive the most up-to-date information on drug shortages.

***

Monday, February 16, 2015

Diabetes drug, Metformin, shows promise as treatment for lupus! Could it be?

I came across this article about a possible new drug to treat lupus. Looks and sounds pretty promising. Read the full article here, and read an excerpt below:

***

Diabetes drug shows promise treating lupus - U.S. researchers

ORLANDO, Fla. Wed Feb 11, 2015 2:00pm EST\



 A common diabetes drug could be part of a two-pronged treatment to reverse the effects of lupus, a chronic autoimmune disease harmful to body tissue that often causes pain and extreme fatigue, researchers reported on Wednesday....In lupus, a person's antibodies, which normally fight against bacteria and viruses, instead attack healthy tissue.

The white blood cells secreting the antibodies feed mostly on blood sugars called glucose, said lead researcher Laurence Morel, a pathology and immunology specialist at the University of Florida medical school.
Her tests found that treatment with the first-line type 2 diabetes drug metformin - in combination with a glucose inhibitor - slowed the metabolism of the white blood cells. They returned them to normal functioning, Morel said.
The testing used white blood cells from patients with lupus, as well as mice, Morel said.

Morel said she got the idea from research in which cancer was treated successfully by limiting the metabolism of cancer cells. From the many existing drugs inhibiting metabolism, Morel said she picked two that had good results in mouth cancer.
***
Read the rest of the article here, but my fingers are crossed. Wouldn't this be a great way to start the year?!

Friday, February 13, 2015

Exercising my good lupus decision making skills - by skipping the exercise, et al!

I never regret a good, healthy decision. So when I made three of them in a row earlier this week, I couldn't help but feel proud.

When I woke up on Wednesday morning, I was tired. Like, really tired. I'd been up the night before with Deirdre who had a coughing fit around midnight, and I had trouble falling asleep to begin with. Doing the math, I simply hadn't logged enough hours of shut eye. Thankfully, the girls were both off to school that day, so I knew I had some peace and quiet coming.

But because they were going to school, I'd scheduled every moment of my free morning: I had product shots to edit, blogs to write, calls to make, and prep to do for Bernadette's 1pm ENT appointment. In addition, I wanted to work out, shower, and make lunches for Bernie and myself for the road - all before 11:50am, when I leave to pick up Bernie from school. I knew I was pushing it with all of my tasks, but if I got right to work, at least I'd get through the majority of my list.

But when I got home around 9:15 from dropping Bernie off at school, I still couldn't shake my fatigue. I thought long and hard about my options:

First on my to do list was editing the product shots.
I needed to clean up the background of a few pillbag photos so I could post on Amazon.
But I was really tired.
And when I'm really tired, projects on the computer (like photo editing) take a lot longer than they are supposed to.
Should I waste an hour of time editing under fatigued conditions, only to end up frustrated, unfinished, and still tired?
Or should I put off the editing to take a quick nap? I'd be refreshed, and the editing would take half the time it would otherwise. I'd still have time for a run, and a quick shower.

Good decision #1: Take quick nap.

I switched on the fire place, set my phone alarm for 10am, curled up on the couch with Darwin and snoozed.

Sleep, sleep, sleep.

Alarm goes off at 10 am.

I turn off the alarm, but I'm still tired.

I think, again, about my options.

I still don't feel up to doing the editing, but I could knock out a blog post. That would require getting up off the couch, going upstairs to get my computer, and getting in compose mode.
But when I'm tired, compose mode doesn't come very easily. In fact, when I'm tired, blog posts take...drumroll, please...a lot longer to write then normal.
Maybe I should just skip the post, and lie here a little longer.

What could I do from this couch?

Ahhhh! I have to prep for Bernadette's ENT appointment today!

That would require very little critical thinking or exertion on my part, and I could do it right from the couch.

Good decision #2: Continue relaxing by the fire while prepping for doctor.

I grabbed my phone, set my alarm for 11am (so I could move on to my workout and shower), and did what I had to do: mapped out questions, listened to 20 minutes of Bernie's sleep recordings so I could share bits with the doctor (which I could do with my eyes closed), and sorted out where my notes and videos resided on my phone so I could pull them up at a moment's notice during the appointment. (Yes...for those of you wondering at home...THIS is what I mean by prepping for a doctor's appointment in my book, Despite Lupus. You have to go in prepared. You have to go in with ammo. You have to go in ready to contribute in an efficient and timely manner.)

Relax, Listen. Relax, Listen.

Alarm goes off at 11am.

Hmmm. Still kind of in relax mode. Actually feel like I could almost fall asleep.

I consider my options:

I could hustle up stairs, change into my work out gear, and run on the treadmill.
I could make a mad dash for the shower, get ready in a flurry, leaving my hair wet and throwing on an outfit.
I could slap the lunches together, and be out the door by 11:50am. I'd be a frantic mess, but at least I would have exercised.
But I would still be tired. In fact, I'd be even MORE tired, because it would be an hour later. And I would have to drive 45 minutes with Bernie to the appointment. And then be "on" during the appointment. And then drive home 45 minutes.
And when I'm tired, the LAST thing I want to be doing is driving.
So do I actually skip my run, and sleep a little more? Do I actually choose safety and fall back asleep?

Good Decision #3: Yes! Skip the run. Sleep some more. Ensure your own safety, and the safety of those around you! I set my alarm one last time for 11:25am. I fall right alseep, and have an even better rest than I did earlier.

Sleep, sleep, sleep.

Alarm goes off 11:25am.

I wake up rested. I feel great. I'm ready to rock.

I hop upstairs, shower, dry my hair, and dress, all at a normal pace. I make lunches, I get out the door right on time, pick up Bernie, and off we go to the doctor's appointment. I don't have an ounce of fatigue during the entire appointment, which actually goes an hour longer than I thought it would.

As I'm driving home at 3 o'clock (which I thought would have been 2 o'clock when I scheduled the appt.), I think about how essential my decision making was that morning. Had I not made those good decisions, I would have been a crumpled, exhausted mess by that point. As it was, I was rested, and feeling great. The drive home went smoothly, and I got a mini - nap eventually, once we arrived home.

Almost all to-do's remained on my list that day, and yet it was successful by my standards. My, how far this Type-A lupus lady has come!

Monday, February 9, 2015

Finding your happy place - despite those lupus lumps.

Whether it's an abnormally hectic schedule, too much disease activity, or cranky kids, there are some moments in life when I find myself ready to explode. I don't have a terrible temper, but I'm not as level headed as I could be when I'm under pressure, or when little munchkins are purposefully agitating me. As of late, though, I've been able to reduce my fury to a mild simmer, simply by taking a moment to talk myself through my exasperation.

My self-talk usually involves reciting a familiar prayer or saying, something that shifts my focus from my charged emotions to the concrete task of saying the words. Here's my usual go-to:

Lord, make me an instrument of your peace. Where there is hatred, let me sow love; where there is injury,pardon where there is doubt, faith where there is despair, hope where there is darkness, light and where there is sadness, joy. O Divine Master, grant that I may not so much seek to be consoled as to console to be understood as to understand to be loved as to love. For it is in giving that we receive it is in pardoning that we are pardoned; and it is in dying that we are born to eternal life.

Depending on how stressful the situation, how symptomatic I am, or what the sass level is in the house, I say this prayer several times a day, sometimes multiple repetitions at a time. In fact, I just keep repeating the prayer until my anger all but dissipates. Sometimes, it takes a lot of repetition (like, a lot), but almost always, I'm able to find my center and deal with the issue with a new found sense of peace.

And in moments that are particularly trying, I don't even get past the first line. I just focus on the words that are so beautifully captured in the first line,

"Lord, make me an instrument of your peace."

That just says so much to me - as a mom, as a lupus patient, as a business owner. In reciting this one line, it enables me to detach from my anger, resentment, or frustration. It puts me in a mode of proactively seeking to improve the situation, while simultaneously asking to share the burden. It's quite empowering.  And after repeating this phrase 20 times in a row, it's pretty hard to fly off the handle!

There have been a few select times (with more to come, I'm sure) where I stop myself at the very first word. Life really does throw some serious lemons, and sometimes, there are so few words that can bring comfort. In moments like those, I may start out by saying the whole prayer, but after a few repetitions of even the first line, all I can muster is that very first word. But oh, what a word!

While this prayer may not be your kind of thing, I encourage you to find the right combination of words or phrases that allows you to step back and reassess. I think we all need to reset every once in awhile. The bestselling book and one of my favorites, Eat, Pray, Love by Elizabeth Gilbert touches on the idea of a mantra, and you can click here to read an excerpt from the book on this subject.

For me,  I'm sticking with my prayer. It's working, and it seems to be making an impact. In fact, just this past week, my kindergartner came home and said, "Guess what our new prayer of the month is? It's that one that you always say with your eyes closed."

Yes, my eyes are usually closed, my sweet little pumpkin, as I'm trying my best not to see red because you've just sassed me to death!

Of course, I don't say it quite like that, but if I'm able to help Deirdre and Bernadette find their happy places sooner than I found mine, all the better. I realize in moments like these the responsibility I have as a mother to lead by example. Despite the fact that sometimes, I'd rather throw a tantrum myself!


Friday, February 6, 2015

Lupus strategies for dealing with the medical waiting game.

Based upon Wednesday's post and the agony of the medical waiting game - below are some tips that I've used over and over again throughout the years. I've used them separately, and in combination with one another. They've worked to ward off anxiety caused by hair loss, angioedema (swellings), hospital stays, new prescriptions, plus the aforementioned wait involved with test results, doctor's calls, and treatment plans. I can be my worst enemy when it comes to waiting. I've decided I can either wait impatiently (causing stress, anxiety, and possible increased disease activity), or I can calmly await the answers to come. Referencing Monday's post, I think we all know which path Darwin would take!

Tips for waiting it out:  

Will yourself not to think about it - Every time you find your mind wandering to the subject, tell yourself you're not allowed to dwell on it, and move on. You can even make a pact with yourself, or set up a reward system (think M&M's every time you skip a damaging Google search), if your brain is being stingy. This strategy works for physical symptoms, too. When I'm suffering from a bout of angioedema, or random swelling, particularly in my lips or face, I have a tendency to check the mirror every five minutes. And I swear, the energy I expend and the stress I cause every time I see the swolleness in the mirror exacerbates the problem. So when my lips swell, I swear off the mirror. I check it once, to confirm that it's swelling, but after that, I force myself to wait an hour, if not more before checking it again. 

Same goes for awaiting those test results. If you're expecting a call or an email,  force yourself not to check your phone every five minutes.  Taking a nap, going for a walk, or distracting yourself can also work. You may feel like you're going to need a day's worth of distractions. But before long, your mind will have moved on. 

Reason it out, and then let it go - When it comes to the medical waiting game, usually it's one of two outcomes. You either have high cholesterol, or you don't. Your antibodies/platelet counts/SED rate have either improved, or they haven't. You either have "x", or you don't. So I find that instead of torturing myself by randomly and non-linearly thinking of all the consequences and subsequent courses of action, I actually take a few moments to map out, on paper, the options. Take an ultrasound I had a few years ago. During a physical exam, my doctor detected my suprisingly strong heartbeat in my stomach. He ordered an ultrasound, to rule out a bulging aorta (yuck!).  As I awaited the results, I wrote out the possible scenarios. 

Possibility A) Aorta is bulging and I have an aneurysm. If so, we’d follow procedures to take care of it. My doctor was on it. I was catching it as early as I could.There was nothing more to be done at this point.

Possibility B) Everything is normal, and my aorta is just abnormally close to abdominal wall (which was, in fact, the case). Felt my heartbeat in my stomach for years, not just quite so strong. Probably just slightly stronger than in the past, and odds are in my favor.

Once I had the realistic options on paper, I put the paper aside, and went on with my life. I had documented the possibilities, and there was nothing more to be done. 

Journal about it - This is another great way to get worries and concerns out of your brain and onto paper. Personally, once I write about an issue, I reach a certain level of contentedness with it. It's no longer swirling around in my brain, popping up at random and inopportune times. Once it's in black and white, I can almost dismiss it. Almost...

Do all you can for one day, and that's enough -  I remember some sage advice from my dad years ago. It was the first summer after my freshman year of college, and I was trying to lose the dreaded Freshman 15 (which was more like 25). I had started jogging several times a week, but after a few weeks, I wasn't seeing results. My dad sensed my frustration, and said, "Look. Have you done everything you can do about it today? ("Yes. I already ran.")  If so, that's all you can do for today. You can't ask yourself for anything more than that." 

This advice really is so true. As you're waiting, if you're following doctor's orders, maintaining healthy lifestyle choices, and avoiding the "cart before the horse" trap, you really can't expect anything more of yourself. Life takes turns, and the only thing we can do is turn with it. If you allow yourself to just roll with it one day,  I think you set yourself to roll with it the next.

That said, I hope you get your ball rolling today! 

Wednesday, February 4, 2015

Whiling away the hours...of the lupus waiting game.

Can you hear that? It's the sound of the Gorman household breathing a big sigh of relief. As of Feb 1st, three out of the four us had their health insurance restored. Thank goodness! (Johnny and the girls were the three affected…but it was a long, hand-wringing, 31 days for mom!!)

The girls have been under Johnny's insurance plan since they were born, while I’ve been on a separate, richer, more costly plan. But with the changes in healthcare, Johnny and the girls had to switch insurance plans, as did a lot of you, I’m sure.

Thus, the first week in December, Johnny and I met with our insurance broker, who laid out our options for new coverage. We ran the numbers, and it made sense for us to combine plans. It wasn’t much savings, mind you – Johnny and the girls’ insurance went way up, while mine went down, but logistically, it would be better if we were all on the same plan. We submitted our application and payment within the first week that apps were allowed. A few weeks later (i.e. the last week of the year), Johnny followed up to check on our new coverage, only to learn that our application wasn’t processed until three days after the deadline. Not sure how that happened, but the outcome was the same: As of Jan 1, we would be without insurance.

Johnny took control, which required many hours on the phone with the insurance company, and was able to keep my coverage in place for another month. But he and the girls were without an option. They would have to wait until Feb. 1st for their insurance to kick in. (After a few days, the insurance company did offer to retroactively put their coverage into place, but we would have had to pay for both my coverage ($1000+) in addition to the new coverage (which is $1200+), so we just couldn’t swing it. So that left us with 25 days and counting without insurance.  

Now, the fact that I had coverage was nice. Johnny made sure that happened. But knowing that the girls and Johnny were without coverage wasn’t pleasant. For the girls, specifically, I had an epi-pen and nasal spray to refill, an ENT appointment to schedule, and had to witness a bout of croup, several lingering coughs, and colds during the month. None of which resulted in a run to the doc, and I hope we would have been able to do whatever was required. Of course, having the funds readily available to do whatever was needed would have been another issue.  

But that’s behind us now. I’m just thrilled that the coverage has kicked in. I hated that waiting period!

The month-long ordeal reminds me of how much anxiety the medical waiting game can really cause. For me, the three situations that cause me the most angst are as follows:

1)     Awaiting test results: Last year, about this time, I was awaiting the results of a lymph node biopsy, and it wasn't fun. The samples had been taken. They were what they were. I just had to sit back and wait. Yuck! 

2)     Awaiting a call back from the doctor: This is usually a shorter time-period, but it can still feel like FOREVER since you left a message with the nurse to pass along to the doctor. I always feel like I’m putting my life’s schedule on hold until I hear if I need an emergency appointment, if I need to up my medication, or if I should just carry on as normal.  Those if’s are the worst!

3)     Knowing your test results, but having to wait for a follow up appointment to know what the plan of attack is: I suppose the wait can conceivably give you time to adjust to the news, or allow you to evaluate the treatments that had likely been discussed previously. But usually, I’m just anxious to get the ball rolling. And the extra wait time gives me way too much opportunity to run the dreaded Google searches that I always warn others NOT to engage in!


On Friday, I’ll tell you a few strategies I’ve come up with for biding my time. But for now, I guess you’ll just have to, ahem...well...wait! (That really isn’t that funny, is it?) 

Monday, February 2, 2015

Pug Will and Pug Won’t - The different lupus lifestyle approaches of Henry and Darwin

I know it’s probably unwise to compare one's kids, but it’s hard to resist. When you catch them in the same situation, at about the same age, exhibiting opposite behaviors, you can’t help but consider the differences. In this case, I don’t think any harm will be done. Our first child, Henry, would have welcomed the debate, while his brother Darwin is pretty easy going about this kind of thing. And given that they’re both dogs, I think I’m okay to continue.

When Henry the pug was alive, he and his brother Darwin were the best of friends. They ate together, slept together, took walks together, played together, and slept together some more. They were never apart for any significant amount of time, and there were very few times I can even think when they would have been apart. And yet, their personalities couldn’t have been more different.

Henry, bless his heart, was stubborn. He was persistent, determined, and relentless. Henry never took "no" for an answer, and he insisted that things go according to his plan. He didn’t stop until he was satisfied with the outcome, and even then, sometimes he’d ask for more.

Darwin, on the other hand, is none of those things. He’s laid back and almost passive. He’s not forceful, or pushy, and he doesn’t even know the meaning of the word “nudge”. Though in the last few months, he has exhibited some impatience when it’s time to take his salami, I mean, his arthritis pill wrapped in salami, I’m going to give him a break. He’s 14 years old…and the man wants his meat. Even still, he’s as docile as they come.

In summation: Henry was trouble. Darwin is not.

And yet, I realize that in various situations involving my life with lupus, sometimes I need to channel Henry’s doggedness, while others, I need to embrace Darwin’s passiveness.

When do I need to be persistent? When does my voice need to be heard, like Henry's? At the doctor’s office for one. Getting my questions answered are essential for making the most of my doctor’s appointments. Henry would have never left an appointment with questions on the table, and I try to keep that in mind when I’m prepping for and organizing my thoughts before an appointment.

Another opportunity to act as only Henry would is when it comes to asking for help. It’s not that I need to be pushy, but I do need to be assertive. I need to figure out where I need assistance, who is best equipped to lend me a hand, and then I need to ask for the help. I can’t feel embarrassed, or second guess myself. I can’t give in to feelings of self-doubt – something that Henry didn’t even know existed. I need to be confident in my need, and forthright in asking for it. Of course, Henry had a way of making people want to do what he asked, so I could sprinkle some of that finesse in there, too.

When does sweet Darwin’s patience and restraint come in? No place better than when it comes to making plans…and then having to break them. Thinking of Darwin in action (or in inaction) reminds me that sometimes, I have to just sit back, and let things happen. Life isn’t always going to take the path I want or expect it to. But just rolling with it is a lot more peaceful than getting my panties in a wad…a thing I know Darwin has never let happen. He knows that with patience, comes reward. With a little accommodation and yielding, comes a less dramatic, or traumatic ending.

Another example where Darwin’s gentleness comes in handy is in trying to help non-lupites understand lupus, its symptoms, and limitations. If I’ve tried explaining it, and someone just isn’t getting it, I realize it may be best to take a break. Step back, and don’t force the issue. Some things take time…and we may need to ease into understanding, over  a period of time. Darwin also knows that some situations are best handled by walking away. He’s left many a room when one of the three Gorman women are using raised or whiney, shrill voices. Henry would have never backed down, and he would have never left a good brawl. Good old Henry.


I’ll continue to use my pugs as reference points in my life with lupus. It brings a smile to my face when I do, and I’m always amazed at how appropriate one of their approaches to life truly is. Oh, how lucky I am to have such cute, smush-faced life coaches!