March 2014 Newsletter

Colorado lupus patients represented at nation’s capitol

20140325IMG_6065Lupus-Shoo7600_0The voice of lupus resounded throughout the U.S. Capitol as the Lupus Research Institute’s National Coalition (pictured right) visited more than 50 legislators and staff for 2014 Lupus Advocacy Day this month.

Inez Robinson, executive director of Lupus Colorado, was there to represent those in Colorado who live with lupus and to advocate for lupus research and improved care.

Robinson urged those in Colorado to make their voices heard. Those who want more attention given to lupus can become virtual advocates without ever leaving home.

“Help amplify and multiply the impact – the louder we speak, the more Congress will listen,” Robinson said.

Visit the LRI Legislative Action Center to learn more about the three key issues that were put forth to Congress. To help lupus patients gain safer and more effective treatments, we ask that our national representatives:

Support HR 460: The Patients’ Access to Treatments Act (PATA)

• Patients must have access to the newest biologic drugs they desperately need and deserve. This bill would protect patients from having to pay a percentage of their prescription drugs – an out-of-pocket cost that could run thousands each month.

Support Funding to Strengthen Biomedical Research at the National Institutes of Health

• We are asking to restore NIH funding levels by 7 percent – a highly reasonable request given the 34 percent decrease NIH has suffered in funding for grants that could improve treatment for lupus and other life-threatening diseases.

Continue Inclusion of Lupus Research in the FY 2015 Defense Appropriations Peer-Reviewed Medical Research Program

• We need lupus to remain on the list of just 25 diseases eligible for research funded by the Defense budget. Lupus particularly targets a growing population in the armed forces – women of color.

Use the Lupus Research Institute’s automated tool to identify and either email or phone your federal representatives. Templates are provided to help you explain the importance of funding lupus research and supporting the bill to improve patient access to the latest medicines.

It only takes a minute to take action that can save lives for years to come!

– See more at the LRI website.


5 Ways to Reuse Your Prescription Bottles

Carie ShermanBy Carie Sherman

Since the first of the year, I’ve been on a mission to reduce clutter in my life. I’ve identified an area of messiness that may resonate with you:

Piles and piles of empty prescription bottles.

Everytime I throw one of those little buggers into the recycling bin, a part of me freaks out: It’s so useable! I have so many! There’s got to be a better way!

And, a quick search revealed an article from Consumer Reports saying curbside programs aren’t a guarantee that pill bottles will be recycled (even though most are a #5 plastic, there’s something about their size makes it hard for them to sort).

So now I feel even more motivated to find ways to reuse prescription pill bottles. Considering I see my pharmacist for a minimum of five ‘scripts a month, it’s a Must Do on my task list.

Here are five ways I’ve reused old pill bottles (no craft skills needed!).

  1. Matches. Keeps ‘em dry and away from a 3-year-old’s hands. Stuff an entire book or use to store wooden matches for camping, by the grill, or wherever you might find yourself needing safe access to fire.
  2. Travel container. I’m inexplicitly drawn to the travel-size container aisle at Target. There’s something about tiny bottles of product that leave me weak in the knee. Well, no more — now that I’ve successfully used pill bottles to bring my shampoo and lotions with me. Label with a Sharpie and you’re set to jet. Q-tips and cotton balls fit great too!
  3.  Spare change holder for your car. It never fails — if I’m required to pay a parking meter, A) It’s a meter that doesn’t take credit cards, and B) I don’t have any quarters in my purse or truck. I’ve always used the ashtray approach to spare change management, but the penny to quarter ratio averages 32 to 1. A pill bottle holds a roll of quarters and, bonus! it’s clear, so I can see when I need to add more.
  4. prescriptions Bobby pins and ponytail holders. I’ve bought hundreds of these items, yet at any given moment, I can locate two ponytail holders and one stretched out bobby pin. After a recent stock-up, I filled two bottles which now roll around nicely in my drawer.
  5.  Buttons. I’m notorious for ripping the tags off of clothes and leaving them in a pile on my dresser in an attempt to keep the attached button. I have a container already designated for buttons, but it’s tucked amongst my sewing supplies in another room. Enter empty pill bottle: Thrown in my top drawer, I can quickly stash the button.

Disclaimer: These are not FDA-approved uses. But if you don’t mind living on the edge, these bad-boys-of-plenty can actually be pretty helpful around the house — and save you a few bucks next time you’re tempted by The Container Store.

What’s your best tip for recycling or reusing your pill bottles?


Please, take a break!

sandy-kanowitz-731x1024By Sandy Kanowitz

“Adding Insult to injury” is a common phrase we all recognize, but as a result of a recent accident, I have coined a new variation of it- “Adding injury to illness.” This experience has given me a new perspective and motivated me to make some changes in my life. I have been analyzing the difference between emotional impact of an acute injury versus having a lifelong chronic disease. Some interesting thoughts have emerged that I thought I would share with you.

Although my accident involved sudden, unexpected trauma, I have tolerated my injuries better than I tolerate my lupus and rheumatoid arthritis.

I found this curious and started thinking about the differences, trying to explain it first to myself, now to you. First, my accident was witnessed and my injuries quite visible. I didn’t have to exert effort and tolerate suspicion trying to convince family, friends, and doctors that I was in pain and in need of help. Everyone could relate to my emotional reaction to being traumatized, frightened, caught off guard, embarrassed and in pain. Although those same reactions occur with chronic illness, initially with diagnosis and repetitively throughout its course, not everyone can relate unless they have experienced the same. Most people can be sympathetic and supportive for a short while with an acute injury or illness. Maintaining that support over long periods of time is not easy, feels draining, and often is accompanied by feelings of helplessness, frustration and even resentment.

With my injuries, I’ll be back to my normal baseline in 2-3 weeks, which feels like a tolerable time period. My illness, on the other hand, feels like a lifetime sentence from which I cannot heal or escape. There is no end in sight nor is there  anticipation of gradually feeling better each day.

On the contrary, it is more like a roller coaster heading gradually downhill, never knowing when the dips are coming or how deep they will be. My injury was a single trauma. My illness involves repeated traumas (needles for example), being frequently caught off guard (by flares or new problems), frightened (about my future), embarrassed (by my appearance and inabilities), and in pain. These repeated episodes of trauma release cortisol, catecholamines (adrenaline), cytokines (from inflammation), all unhealthy responses when chronic,  and suppress neurotransmitter formation (the chemicals that make us calm, happy, energetic and upbeat).

Another common phrase I like is “take a break,” and I decided that could be part of the solution to the long term nature of lupus. Taking a break can give us an opportunity to feel better, maybe even normal, for a short while. It gives us a light at the end of the tunnel, albeit temporary. It can interrupt the constant flow of excess cortisol, catecholamines and cytokines, and boost neurotransmitters to improve mood, sleep, appetite, energy and outlook. Much like anticipating our injury will heal, we can look forward to our “break” in the same way. There are, however, some rules of engagement to consider and follow regarding these breaks from illness-related thinking and behaviors:

  • Set goals for your break. It may be to just relax and rejuvenate, try a new adventure, see a new place you’ve never been, a visit with family you miss, a reunion with old friends to reconnect, etc.
  • Actively plan your break by picking a date, time, putting it on your calendar and making the necessary arrangements or appointments. If all the preparation is done, you will be less likely to cancel at last minute.
  • Be realistic, and keep your break within reason of what your schedule, budget and abilities will allow.
  • Frequent short breaks may be more helpful than infrequent long breaks. You define what a break is. Try making a list of anything that may be enjoyable. Examples – a massage, a spa day, a shopping spree, a day out with a friend, a dinner date with significant other, a weekend getaway, a vacation, a day without electronics beeping at you and phones ringing, a three-hour nap.

As you can see, it need not be long or elaborate, just something you want or need that will help you feel better.

  • Approach your break expecting to feel well and feel even better as a result of it.
  • If planning a trip, pack attire and accessories to help you look nice and feel attractive in your vacation setting.
  • Vow to not think about, talk about or focus on your illness during your break. This is easier said than done, but important to provide a mental break from illness as well as physical.
  • Plan what to do during your break that will give you enjoyment, peace, tranquility, adventure, laughter, fun, camaraderie, creativity, whatever you need at this time to meet your goal.
  • Pace yourself before your break to get preparations done and avoid going into your “vacation” from illness exhausted or worse yet, feeling sicker than usual.
  • Be sure you aren’t going to run out of your medications or needed supplies during your break.
  • If you need to increase your dose of medications temporarily, such as prednisone, to ensure you will feel your best, discuss that with your doctor.
  • Last but not least, don’t fret over the small stuff, stay flexible, and have fun! As soon as your break is over, start thinking about next one, so you always have something to look forward to. Sweet dreams, bon voyage, Shalom!

Sandra Kanowitz

Anita shares tips for getting close when you don’t feel well

AnitaWCactus (2)Dear Gentle Readers,

I’ve been thinking a lot about intimacy these days. Many people equate intimacy with sex. That is true, but it is only one part of the whole group of actions and emotions that make up intimacy. And intimacy is especially hard to think about when you are hurting and any touch, no matter how gentle and sweet it might be, makes you cringe.

Intimacy starts at birth with the newborn child cuddling his mother to receive comfort and nourishment from her breast. Mom also feels that closeness by cuddling her child. Later, as the baby grows into a child, he runs to his mom for comfort when he falls and skins his knee. It’s not the cleansing of the wound or the band aid that she puts on it that comforts him; it is the kiss she gives the scratch that makes it “all better.”

The child grows into a teen and begins to get the stirrings of intimacy as we feel it as adults. He holds his girlfriend’s hand as they walk in the park. He puts his arm around her neck when they sit together in the movies. She feels those stirrings of intimacy and knows he cares about her. No sex. No body exploration. Just a casual hand holding or a bit more.

The child grows into an adult, finds a mate and gets married. While they are dating, they explore many things together – the woods near their houses, the shopping center, a miniature golf course, and each other’s bodies. What does it feel like to touch a breast or to be touched? What does it feel like to explore each other even further? Many times the couple fall in love and get married. They can’t get enough of each other—to dine with, to speak with, to sleep with, to have sex with.

heart-cloud-900x675And so the marriage matures and the cycle begins anew. A baby is born and is cuddled by this new mother. And so on.

But wait – this is only the fairy tale version of life. What about if you have lupus or another chronic illness that make you hurt much of the time? You don’t want to push your spouse away yet you can’t stand to be touched. How do you deal with this? Hold his hand. Tell him how much he means to you, how much you love him. Cuddle with him, but let him know that this is as far as you can go. You’d like to be able to do more, and maybe someday you can, but right now all you can handle is a warm, tender hug and the understanding that life gives you challenges. It is up to you how you deal with them.

Until next time ….

©2014 All rights reserved Anita Fricklas