One Simple Conversation at a Time: #StopHIVTogether

This post is made possible by support from the Let’s Stop HIV Together campaign. All opinions are my own.

In the late 1980s, I explained how to use a condom to hundreds of men I didn’t know who had called the Florida AIDS Hotline as they tried to figure out what to do about the new challenge threatening their health. I had been volunteering and acting as an on-call supervisor at a local crisis hotline, and it was awarded the contract for the AIDS Hotline. I was not an ally yet; I was just doing a job.

Over on the west coast, Mark S. King was also volunteering for an AIDS-related project. When he chose to volunteer for AIDS Project Los Angeles (APLA) in 1986, he was doing more than “just a job.” Having been diagnosed as HIV positive in 1985, he needed to do something, and coordinating the APLA speaker’s bureau was his outlet. He thought he would be dead soon and craved immediate gratification.

As it turns out, Mark did not die in 1986 (thankfully). Although he lived in “three year increments” for quite some time after his initial diagnosis (hear more about that in this video with his friend, Lynne), he has now been living with HIV for 31 years and the virus is undetectable in his blood stream due to treatment (although the antibodies which result in an HIV+ test result will always be there).

HIV Prevention

Lynne and Mark

When I had an opportunity to interview Mark recently, I learned that many facts about living with HIV have changed. Specifically, the definition of “prevention” is much broader than it was back in the late 80s. For me in 1988, it meant telling strangers “don’t have sex” or “use a condom.” Mark says the most powerful preventative among his community at the time was: funerals.

In 2016, Prevention and Living with HIV Are Different

In addition to condoms, there are now more options for prevention:

  • PrEP (Pre-exposure Prophylaxis) – people at high risk for HIV can now take a medication that lowers their chances of getting infected. Learn more here.
  • PEP (Post-exposure Prophylaxis) – People who have been potentially exposed to HIV can take antiretroviral medicines (ART) after being potentially exposed to prevent becoming infected. Learn more here.

For people who have tested HIV+ but are on treatment, remaining on treatment in order to keep the virus undetectable is an option. Partners who go this route should know that:

  • · Everyone’s “undetectable” status is only as good as their most recent test.
  • · This choice clearly requires a level of trust between partners.

HIV Prevention

Simple Conversations Can Dispel Misinformation

Ironically, having not batted an eyelash throughout Mark’s book, which chronicles his experiences owning a phone sex hotline and frequent cocaine consumption in the 80s, I found myself hesitating to ask what he meant when he said several times, “I am able to have sex safely with my husband because I am on treatment.” Finally, I just admitted I needed to know more about what exactly he meant.

That’s when he clarified that an HIV+ person on successful treatment can’t transmit HIV. This has been the case for five years.

If I hadn’t asked or he hadn’t been willing to share, I would not have known. The solution to clearing up my confusion was a simple conversation.

“At Risk” Can Mean Anyone

To be perfectly honest, I am not sure if a single person I know and interact with here in Tallahassee is HIV positive.

Even though I don’t currently have someone in my circle who is HIV+, my circle has gotten a heck of a lot bigger since I have gotten involved in (some say addicted to!) social media.

Is there someone among my 2500 Facebook Friends, 9500 Twitter Followers, 3000 Instagram Followers, or 225 Snapchat Friends for whom I can make a difference?
I can’t be sure, but I know that doing nothing is not an option when:

  • Youth aged 13 to 24 accounted for more than 1 in 5 new HIV diagnoses in 2014.
  • Young gay and bisexual males accounted for 8 in 10 HIV diagnoses among youth in 2014.
  • At the end of 2012, 44% of youth ages 18 to 24 years living with HIV did not know they had HIV.
  • My peers are re-entering the dating world as decades-old marriages end and/or discovering that their partners were not monogamous and may have put them at risk.

Will someone identified in one of the above bullet points see something I post and feel less alone, more fortified to proceed with testing, more confident in engaging in a simple conversation?

Even if the people in the populations mentioned above don’t see one of my posts, maybe you will (and I know you’ve read this far, so you are equipped to help!). Stigma is eliminated one chat at a time, and I am asking you to help make a difference.

HIV Prevention

A Year Can Change Everything

I love the fact that this post is going live on June 26. Last year at this time, rainbows proliferated as same sex marriage was legitimized. However, the year has brought with it the flip side of the coin: those who spread hate.

I was so very excited to speak to Mark. We both sort of threw out the pre-written interview questions and just …. talked. The only moment of silence was when our conversation wandered to the tragedy that occurred at the Pulse Nightclub in Orlando. Mark told me how he, at 55, an award-winning activist in a happy marriage having overcome so many hurdles, was shaken to the core, immediately transported back to feeling like an unsafe sissy at risk of daily beatings. I stumbled for words, failing to respond adequately but empathizing at the same time.

What does that have to do with HIV?

It has to do with HIV because it’s hard enough for some people to come to terms with their own sexuality, much less the strategies they have to employ in order to protect themselves and others from HIV infection. Feelings of being unworthy can be the most difficult barriers to self care. As Mark says, the enemy is a virus, not our humanity.

What Can One Person Do?

If you still don’t understand HIV, ask.

You can get the facts.

If you are ready to help, click here for tons of resources.

You can get tested or help someone who needs to get tested figure out how.

You can get involved and share a story.

You can get materials to share.

And to learn more about Mark, visit his site, follow him on Twitter at @myfabdisease, like his Facebook page by clicking here, or buy his book here.

Lastly

My journey to being an ally was, in retrospect, pre-ordained. I am grateful every single day that I was put in that little room talking to all those strangers about condom usage. I heard their fears. I went myself for an HIV test (never mind the fact that the behaviors I thought put me at risk were, um, hardly risky). For the long version of my ally story, Not About Me, click here.

Yes, Mark is HIV+ but the part that came through to me was our commonalities. We laughed about the fact that we both have “old fashioned” AOL accounts. We shared some fun word play as we exchanged messages. We talked about how each of us goes about life trying to live with joy and humor.

I don’t know about you, but I’m all for more joy and humor, and a lot less stigma.

HIV Prevention

Migraine and Headache Awareness Month

Migraine Headache Awareness

I first became acquainted with Barbara Ross when my mother-in-law, Barb, was on the executive director selection committee for the agency that is now Lighthouse of the Big Bend. As the years elapsed, we became friends. I have always respected her many professional gifts; I love her loyalty, perceptiveness, and communicativeness as a friend.

Barbara has had many health challenges over the past several years, severe enough to leave her job. The process of finding a diagnosis has been daunting. Many mysteries remain, but one thing she does know is that migraines are a part of the complex of issues with which she is dealing.

When she posted “30 Things About My Life with Migraine” on her Facebook page, I asked if I could share this list with my blog readers. Although everyone’s experience is different, the list does an incredible job of a) explaining one person’s experience with migraine b) explaining to friends, family, and the general public what they can do to help someone who suffers from migraine, and c) acknowledging the people who have been her devoted supporters.

Thank you for sharing this migraine headache awareness post, Barbara, and for making one of the hardest things you’ve ever endured a vehicle to help others understand.

1. My diagnosis is: migraine without aura, chronic (i.e. daily)

2. My migraine attack frequency is: 6 – 7 times a week

3. I was diagnosed in: 2000-ish with migraines maybe twice a month

4. My comorbid conditions include: a) POTS / neurocardiogenic syncope / orthostatic hypotension (aka when I stand, my blood pressure falls and my heart races, resulting in fainting because of a screwy autonomic nervous system) b) reflux/GERD c) hypothyroidism

5. For prevention I’m trying Botox, plus one daily medication, plus one supplement (CoQ10.) I use 3 triptan medications to treat acute attacks although these only work 60% of the time.

6. My first migraine attack was: on a plane flying back from Ireland in 2000. In June 2015 my migraines worsened and by December 2015 they were daily.

7. My most disabling migraine symptoms are: severe nausea, vomiting, extreme pain in temples, painful sensitivity to noises, inability to think (brain fog)

8. My strangest migraine symptoms are: anything touching my skin hurts like rough sandpaper rubbing against me

9. My biggest migraine triggers are: bad weather and disrupted sleep

10. I know a migraine attack is coming on when: I have a sudden, extreme drop in energy.

11. The most frustrating part about having a migraine attack is: not being able to make my brain work – it interferes with everything I try to do on a practical level, but also my identity is tied to my intelligence & creativity which are often inaccessible.

12. During a migraine attack, I worry most about: being an imposition, letting others down, and not getting ill in public.

13. When I think about migraine between attacks, I think: I have to find something to prevent my being sick so often so I can resume my life – be a partner to Michelle, have fun with friends, dance, write, get a job to continue making a difference in the world, etc.

14. When I tell someone I have migraine, the response is usually: crickets in the awkward silence – most folks don’t seem to know what to say.

15. When someone tells me they have migraine, I think: ‘Oh NO!’

16. When I see commercials about migraine treatments, I think: I wish that worked for me…

17. My best coping tools are: Quiet (thank goodness for ear plugs), ice pack on head, lying down on something soft, cool air, sleeping.

18. I find comfort in: empathy from others, affection, understanding of loved ones, kindness

19. I get angry when people say: “You need to do better at getting a handle on this.”

20. I like it when people say: words of understanding & empathy or sympathy, even ‘you poor thing’ is better than silence.

21. Something kind someone can do for me during a migraine attack is: keep things quiet, cool, and bring me an ice pack.

22. The best thing(s) a doctor has ever said to me about migraine is: I know this is horrible for you.

23. The hardest thing to accept about having migraine is: it sucks there is no cure… I would do anything to end this.

24. Migraine has taught me: to take advantage of energy when I have it and be grateful when I’m not so ill I have to lie flat.

25. The quotation, motto, mantra, or scripture that gets me through an attack is: I know this will ease up eventually.

26. If I could go back to the early days of my diagnosis, I would tell myself: save more money!

27. The people who support me most are Michelle & Robin

28. The thing I most wish people understood about migraine is: there is very little you can do about it, it is not in your control.

29. Migraine and Headache Awareness Month is important to me because: maybe awareness will bring funding which will bring a cure.

30. One more thing I’d like to say about life with migraine is: Every time I have an actual good day, without a migraine, I hope that somehow I’m healed and can return to life… only to be crushed with disappointment.

Being so sick every single day is one of the hardest things I’ve ever endured.

To follow along on social media during Migraine and Headache Awareness Month, use the hashtags #‎MigraineAwarenessMonth‬ and #‎MHAM.

You can also find more information at Migraine.com. People with migraines and their families/friends/caregivers can request to join the Migraine Support Group on Facebook.

Migraine Headache Awareness

 

73 Questions

When I looked back through old blog drafts, I remembered my fleeting interest in the 73 Questions feature from Vogue Magazine. I became interested in this format when I read Being Rudri’s version.

Here’s my stab at it!

1. How long have you been in the area? 31 years in Tallahassee (with 3 years in New York dividing two Tallahassee periods)

2. What’s your favorite season in Tallahassee? Spring

3. What’s your favorite activity in Tallahassee? Running

4. Would you ever leave Tallahassee? Yes

5. What are three words to describe living in Tallahassee? Hilly, Southern, Cultural

6. What’s your favorite movie? Philadelphia

7. Favorite movie in past five years? I actually haven’t seen many movies in the past five years, and the ones I have seen were chosen by my son (looking at you, Fast and Furious). But after reading the book, I couldn’t WAIT to see Me Before You and the movie did not disappoint!

8. Favorite Hitchcock film? The Birds

9. Favorite TV show that’s currently on? 23.5º with Sam Champion

10. What’s a book you plan on reading? A Place Like This: A Memoir by Mark S. King

11. A book you read in school that positively shaped you? The Diary of a Young Girl by Anne Frank

12. A book you read in school that you never think of? Beowulf (but how are we supposed to answer this question? The mere fact that I *think* of Beowulf sort of disqualifies it!)

13. On a scale of one to ten how excited are you about life right now? 7

14. iPhone or Android? iPhone

15. Twitter or Instagram? Twitter

16. Vine or Snapchat? Snapchat

17. Who should EVERYONE be following right now? The Gates Foundation

18. What’s the coolest thing in your office? I don’t have an office right now but my favorite things were my annual Broadway Playbill posters.

Self Awareness

19. What’s your favorite downtown restaurant? Bella Bella

20. What’s your favorite food? Penne alla Vodka

21. Least favorite food? Overripe bananas

22. What do you love on your pizza? Vegetables

23. Favorite drink? Spring Water

24. Favorite dessert? Dairy Queen Blizzards

25. Dark chocolate or milk chocolate? Dark Chocolate

26. Weirdest thing you’ve ever eaten? An Ant

27. What’s the hardest part about being a mom? Having to let go (fearing for their safety), despite my belief in the power of prayer, and as my friend Lea so eloquently stated, “and the knowledge that somehow there is a God who loves them even more than we do. and He watches over them constantly!!!”

28. What’s your favorite band? The Florida State University Marching Chiefs

29. Favorite solo artist? John Ondrasik of Five for Fighting, Idina Menzel

30. Favorite lyrics?

When you walk through a storm
Hold your head up high
And don’t be afraid of the dark
At the end of the storm
There’s a golden sky
And the sweet silver song of the lark

Walk on, through the wind
Walk on, through the rain
Though your dreams be tossed and blown
Walk on, walk on, with hope in your heart
And you’ll never walk alone
You’ll never walk alone

(From Carousel’s You’ll Never Walk Alone) Here’s Celtic Woman’s version:

31. If your life were a song, what would the title be? Turn! Turn! Turn!

32. If you could sing a duet with anyone, who would it be? Josh Groban

33. If you could master one instrument, what would it be? My Voice

34. If you had a tattoo, where would it be? On my inner wrist (a semi-colon)

35. To be or not to be? To be

36. What’s Oprah like in person? I’d love to know!

37. What number of question was this? #37 (I guess this made more sense in a rapid-fire five minute interview)

38. Dogs or cats? Cats

39. Kittens or puppies? Puppies

40. Dolphins or koalas? Dolphins

41. Bird-watching or whale-watching? Whale watching

42. What’s your spirit animal? Sloth

43. Best gift you’ve ever received? My children

44. Last gift you gave a friend? Besides green pens, a Motivate Wrap that said “You Got This”

Self Awareness

45. A person you want to have coffee with? Sam Champion (see answer #9!)

46. A historical figure you’d love to have coffee with? Dorothea Dix

47. How do you like your coffee? With skim milk and stevia

48. Can I play a note on this piano? Doesn’t Apply

49. What’s your favorite curse word? I dislike them all but sadlly, it rhymes with “duck”

50. What’s your favorite board game? Apples to Apples

51. What’s your favorite country to visit? Guatemala

52. What’s the last country you visited? El Salvador

53. What country do you wish to visit? Spain

54. What do you see in this image right here? Doesn’t apply

55. Can you write down your favorite word that starts and ends with the same vowel? abracadabra

56. What’s your favorite color? Red

57. Least favorite color? Beige

58. What color dress did you wear to your prom? lavender

59. Diamonds or pearls? Diamonds

60. Cheap shampoo or expensive? Expensive if it works

61. Blow-dry or air-dry? Blow-dry

62. Heels or flats? flats

63. Can you give an impersonation of someone? No

64. Can you do the same impersonation with a British accent? No

65. My friend outside this window would love to ask you a question? Doesn’t Apply

66. [Holding two different colored dresses] Which should I give my girlfriend? Doesn’t Apply

67. Pilates or yoga? Yoga

68. Jogging or swimming? Jogging RUNNING

69. Best way to decompress? Take a walk

70. If you had one superpower, what would it be? Waving a wand and creating peace

71. Can you describe an experience you felt most nervous? Trying out for cheerleading before the senior year of high school

72. What’s the weirdest word in the English language? In a nod to the Idiots Running Club and the word every runner loves to hate: moist

73. Last question: Is this the strangest interview you’ve ever had? Doesn’t Apply

It bugs me that there were six “Doesn’t apply” responses since I stuck strictly to the previous structure, so  I looked up some other “getting to know you” questions and used a random number generator to pick 6.

1. Most important quality in a friend? Trustworthiness

2. When was the last time you got the giggles at an inappropriate time? Oh I don’t know! It hasn’t been recently (or often enough!). It wasn’t the giggles but I was talking with a friend recently about something very serious, and I was trying to make a light and slightly sardonic observation while indicating I cared. The interaction was heavier on the sardonic and lighter on the serious. I sent her a message later that day to clear it up.

3. What is your favorite kind of music? I like all kinds of music, but as almost everyone is surprised to hear, rap is a fave.

4. What is the last book you read? Circling the Sun by Paula McLain

5. What date on your calendar are you looking forward to? June 26, my daughter’s 20th birthday!

6. What makes you laugh out loud. Hmmm…..it takes a lot! I laughed out loud recently at passages from Shonda Rhimes’s Year of Yes, at Lino Rulli on Facebook Live, and at frolicking puppies.

What are some of your answers to these questions? Fun exercise! I recommend everyone to try it. 

Four Heartfelt Takeaways From Running

Then, somehow, from a place beyond sense or strategy, she breaks forward, unpinned from her body’s flaws and marvels. It’s only courage that takes her the final distance. Only grit. ~Paula McLain 

As I was struggling through a 4-mile run last week, I was listening to Circling the Sun by Paula McLain. Horse racing is one of the main topics of the book, and the protagonist, a rare female trainer in the 1920s, needed her horse to win. The horse had started out strong, but was not in the lead as the end of the race approached. The passage above describes how the horse found her reserves and transcended what she was physically capable of in order to win. She became unpinned from her body’s flaws and marvels, buoyed by courage and grit.

My body’s flaws are winning over courage and grit, and I am trying to figure out how to get them all to make peace with each other.

Since April 2015, when I had an electrophysiology study after which my physician decided he could not do an ablation, the plan to deal with my multifocal atrial tachycardia has been to take a beta blocker a half hour before each run.

After having my procedure on April 6, 2015, I went on my first mile run on April 14. It took 14:06 to run 1.06 miles (13:17 pace). My average heart rate was 143 and my max heart rate was 153. On June 4, 2016, about 14 months later, it took 57:42 to run 3.16 miles (18:16 pace). My average heart rate was 138 and my max heart rate was 197. Both times (all times between now and then), I had taken my beta blocker a half hour before starting the run.

Although there have been a few brief visits to the sub-13:00 per mile speed over the past 14 months, it has been far more typical for my average pace to be in the 14’s, 15’s, or 16’s. For me, running on beta blockers is like running through mud.

I suppose my hope after the electrophysiology study, once I knew there had been no ablation and the ongoing plan involved medication before every run, that I could reach some consistent “status quo.” It has taken me the whole 14 months to begin to let go of my years-old goal of running a sub-30 5K, but as time passes the question becomes “where does running fit for me at all?”.

Is running still good for me physically?

Although I am fortunate to have an electrophysiologist with a great way of explaining things and a respect for the sport of running, he also says, “you know it’s not necessary to get your HR up to 160 (or whatever…) for it to be a workout,” right?

He’s right – I can get a good workout in a multitude of ways that don’t escalate my heart rate like running does.

But they are not running!

Nothing I have read online, no doctor I have spoken to, no one I know who has tried to combine running with an arrhythmia situation really has the clear answer.

Probably the best summary is: running while experiencing tachycardia is not generally as dangerous as it sometimes feels. BUT given that my EP thinks mine is likely to convert into atrial fibrillation (which increases stroke risk) over time, and the fact that I usually run alone, and the fact that I have to err on the conservative side because I want to be around to see my kids grow up, I think I have to assume that running to the point of abnormally high heart rate is not necessarily the healthiest choice for me. (Ironically, if it DOES turn into AF, I will be a candidate for an ablation again, and it is likely to work, but I can’t engineer that situation into being.)

What do people think?

If I had a dime for every time I have said, in all sincerity, to another runner or prospective runner, “you’re only competing against yourself,” “every mile matters,” or “you’re lapping the person on the couch,” I would be wealthy.

However, I would be totally lying if I didn’t say these are the thoughts that have dogged me over the past few months. At first, after the EP study, I thought I would reach that comfortable status quo, and just blend into the scenery at races, just log my usual refreshing and energizing training miles, just keep doing something good for my body (and mind) out on the roads and trails.

But that little “how can you still call yourself a runner?” voice in the back of my head will not stop its incessant pestering.

  • When I post my times to DailyMile and people see it took me 18 minutes to run a mile.
  • When I stop right before the finish line as I did at Gate to Gate and walk little circles off to the side while doing a Vagal maneuver to try to get my HR down from 197 so I am not running the risk of passing out in public as finish line adrenaline kicks in.
  • As I tell people “really, no, don’t wait for me. I’m going to take FOREVER.”
  • As I participate in races, trying to keep my feet running without my heart noticing they are while my head tries to mediate between the two
  • As I stopped logging my food and gained back 25 pounds I lost while training for a half marathon (and obviously my cookies-every-day habit has nothing to do with my tachycardia except for the fact that I know my mindset and my eating choices are inextricably intertwined right now).

You Can’t Trust Technology Blindly Without Listening to Your Body Too

Even when you have the best technology, you still have to pay attention to your body. Back in November-December of 2015, I was seeing “high” readings on my Garmin. These readings, for example, led me to run/walk the Turkey Trot rather than solely running it at a moderate pace. I decided maybe the batch of metoprolol I had recently been given was “bad.” I called the Publix pharmacy which had dispensed it, which said it was fine. I called my EP’s office, which confirmed the readings from my loop recorder were fine. It turns out my receiver on my Garmin chest strap was bad (oops!). I ordered a new one and the problem was solved. Now I follow the care instructions for my chest strap to the letter (it has to be cleaned often to prevent salt buildup).

How do I still contribute to the running community?

Running pervades every single aspect of my life. If I’m not dressed up, I’m almost always in a race shirt. If I am packing for a trip, the running shoes go in first. If it’s a weekend, my review of possible activities always involves which races are being run. I am a running groupie, and running people are my favorite people.

I have commitments as a Fitfluential Ambassador, a Charity Miles All-Star, and as a runner for Gareth through I Run for Michael. I know Gareth’s family “gets it” because he also has an invisible condition (a mitochondrial disorder). I know Charity Miles has my back – I can walk/bike and/or keep running 18 minute miles and #everymilematters still applies because the causes we love benefit. Fitfluential is a bit more challenging. I can only hope that my choices during this frustrating interim period help someone else who is struggling know they are not at all alone and you can have a love of fitness without looking like a fitness magazine model.

Running Cardiac Issues

While I suppose it would be an easier thing to discuss if I had a cast on my leg or some other outward physical sign of a health challenge, an invisible condition like a cardiac arrhythmia with questionable impact plays a different role in the multi-act play that is my running life.

I suppose I am at the intermission and the second act of this play has not been written nor rehearsed yet.

Running Cardiac Issues

A Child’s First Words

This post is made possible through the support of Cochlear. All opinions are my own.

It seemed like a technicality: after having my son’s first birthday picture taken at our local newspaper’s office, I was asked if I wanted to complete a communication screening from the First Words Project. While I knew some of my answers to questions like “does baby look to where you point?” had not been “yes,” I wasn’t especially worried…

I wasn’t especially worried until l got a letter from the project that said Wayne was not communicating at the level that would be typical for a 12-month old. I was invited to come in for a detailed screening.

I would be dishonest to say the questionnaire and subsequent invitation to a detailed screening were totally unexpected. I have a degree in child development. I have an older child who had hit typical milestones by twelve months that Wayne had not achieved. I had stood behind him, at 4 months old, clapping loudly hoping he would startle (he did not). After that, I had gotten his hearing tested (he passed the hearing test).

But something was not right.

He had very few words.

He was not looking at objects I tried to direct his attention to.

He was, in the official language of the First Words evaluator on a Communication Evaluation Report, “communicating below what is expected for a child his age.”

Cochlear Implants

Over the next year, Wayne participated in a therapeutic play group at First Words and continued to undergo evaluations. I was fanatical about doing every single activity designed to provide additional support, such as “increasing sound and word productions during predictable routines” and “increasing use of gestures.” I had already been a very interactive parent; I probably looked a BIT frenetic in my effort to connect with him.

By his second birthday, the project evaluators told me he was no longer “below what is expected for a child his age.” He had subsequent annual evaluations until kindergarten, when he was declared ready for kindergarten.

Although Wayne’s communication issues ended up being resolved (in layperson terms, he had apparently been a “slow talker), I developed (and maintained) a hyperawareness about young children and communication issues.

My own personal experience of constant anxiety about my child’s future, and the possibility that some doors would be closed to him because of a communication disorder, is what compelled me to join the Cochlear team to discuss how they help people have access to sound.

One to six out of every 1,000 children in the United States may be born with a severe to profound hearing loss.¹ Just as early intervention helped our family determine if my son had a communication disorder (and rule out hearing loss at 4 months of age), Cochlear knows how critical early intervention is for children who may have hearing loss. Identifying and treating hearing loss early has been confirmed by research to lead to better speech, language, cognitive and social skills outcomes compared to later-identified children.²

Cochlear provides parents with online support, information, and the opportunity to connect with others specifically about hearing loss. If a child does have hearing loss and his or her audiologist, doctor, or other qualified professional determines a cochlear implant should be considered, the resources at IWantYouToHear.com will help the family start the process of figuring everything out (medical professionals are of course absolutely critical to evaluating the decision).

For Natalie, Cochlear’s role in her life as a toddler will extend into the rest of her lifetime.

I was devastated when I got that first letter from the First Words Project telling me Wayne was not communicating on a level of other children his age. I still struggled to understand, even as I went through the motions: the evaluations, the play groups, the home activities. I called one of the evaluators to lay bare my fears: that the outcome of these activities was not going to be good. Fortunately, she listened, with empathy and expertise.

Cochlear aims to do the same: meet new parents where they are, with empathy and expertise.

As their motto says, they want their patients to:

Hear Now. And Always

Cochlear ImplantsOn June 1 from 7 am – 7 pm MDT, Cochlear is hosting a Facebook Q&A — Building Your Child’s Brain, One Word at a Time — with the Thirty Million Words team. Ask a question at the chat! Click here for more info.

Note: The Thirty Million Words Q&A is over, but you are welcome to follow their Facebook Page for continued access to information about young children and communication skills!  ~ pk 6/2/16

NOTES:

  1. The Prevalence and Incidence of Hearing Loss in Children. Available from: http://www.asha.org/public/hearing/Prevalence-and-incidence-of-Hearing-Loss-in-Children/
  2. Tharpe AM, Gustafson S. Management of Children with Mild, Moderate, and Moderately Severe Sensorineural Hearing Loss. Otolaryngol Clin North Am 2015 Sep 30.

The Puppy Run: A Race Report

Yesterday morning (5/21/16), I ran The Puppy Run, a virtual run presented by FitFam which benefited Valhalla Canine Rescue.

Dog Rescue Virtual Run

Many people ran with their dogs, such as KR Endurance Coach Rebecca, who ran with her pup Teaka Bear:

Dog Rescue Virtual Run

Since I don’t have a dog, I tried to figure out how I could meaningfully participate. Since many of my friends either volunteer with organizations that help rescue dogs or have rescue dogs themselves (or both), I decided to use the opportunity to help tell the stories of some rescue dogs who need homes.

My friend Gabrielle connected me with Black Cats and Old Dogs, a rescue organization which prides itself on “rescuing what others refuse.” I used their website to filter for the most senior dogs. Since there were three, I dedicated each of the three miles to one of the senior dogs who needs a home! Here’s the way I modified the bib to feature them:

Dog Rescue Virtual Run

Mile One – Fannie

Dog Rescue Virtual Run

 

Fannie is a 9-year-old Yellow Lab mix who acts more like a 4-year-old! If you play ball with her, you will be her best friend for life. Fannie is good with other dogs and doesn’t have any concern about cats. She is house broken, spayed, current on vaccines, and heart worm negative. Learn more about her (and see a video!) here.

 

Mile Two – Maria

Maria is a 12-year-old Husky Shepherd mix. She loves to cuDog Rescue Virtual Runddle on the couch and she also loves all cats and dogs. Most of all, she loves relaxing in a quiet home.

 

Mile Three – Nicholas

Dog Rescue Virtual RunNicholas is a 7-year-old lab mix who will make the perfect family dog! He’s a sweet and gentle guy who just wants to be loved! Nicholas is neutered, current on vaccines, and has begun slow kill heart worm treatment.

 

 

The Race Itself

The actual running part of the race wasn’t all that remarkable. I’ve run the route around my neighborhood countless times before. My time was one of the worst times for that route (I am still experiencing some heart rate challenges so I’ve tried to stop obsessing about “bad” times). However, I did pass a neighbor run/walking with her new dog (twice), which seemed fitting given the dedication/purpose of my run.

The “medal” was a piece of paper designed to look like a medal:

Dog Rescue Virtual Run

(Note: There were actual medals (for humans AND dogs!) but I opted for the digital swag package!)

I also had the additional momentum of being part of a community who cares about dogs and wants to celebrate their role in the fitness world — as companions, motivators, and diversions (with their amusing antics).

Awesome pace or not, it was still PAWsitively fantastic (I had to fit one pun in!) to be part of The Puppy Run!

More on Fannie, Maria, and Nicholas

For more information about these three dogs and the other animals up for adoption from Black Cats and Old Dogs, please click here.

If you are here in Tallahassee, stop by P.A.W.S. tomorrow (5/22/16) between noon and 4 p.m. to meet some of the animals up for adoption!

Dog Rescue Virtual Run

 

Dog Rescue Virtual Run

What Matters Most

A month or so ago, another adult and I got in an online argument about Disney character waffle irons.

Yes, we really did.

I am part of an amazing group on Facebook. The group is for parents of participants in the Disney College Program. There are over 1,000 of us.

I had shared the Google Doc Tenley and her roommates had developed to figure out who was bringing what for move-in. It was an attempt to make sure they ended up with the correct distribution of needed items, instead of six toasters and no TV (for example).

Apparently I am not always as hilarious as I think I am, because when I explained that the three waffle irons the girls planned to bring were necessary because (duh!) they were different characters, she responded back with “there is a space issue.” While it is true that space is at a premium, I had been kidding. Jesting. Making a joke, Being sardonic. She went on to DM me, asking me to untag her (because Facebook automatically tags people in responses now). Before I could breathe, I received a second “please untag me” message.

The whole exchange above got my blood pressure high and resulted in about a half hour of wasted negative energy I threw out into the universe that I will never get back.

A Dramatic Reminder

Tonight, though, I had a big, profoundly earth shattering reminder of what matters most (hint: it’s not waffle irons and quibbling over social media practices).

One of Tenley’s fellow College Program participants passed away today of natural causes. (Secondary issue: one of the buses used by the College Program was run into by an SUV driving the wrong way, causing both vehicles to be on fire and causing multiple injuries (but no fatalities, thank goodness).

I found out about the death right as Wishes began – the grandiosely optimistic, beautiful, heart-warming, and magical fireworks display at the Magic Kingdom, the one I had been determined to see this visit after missing it on previous visits for various reasons.

As I saw all of the participants in the Parents’ Group respond to the verification of the situation, with their sadness, their promises to pray, their shock, and their overwhelming dedication to a community of people who have come to care deeply for one another, I took a quick snap of the fireworks (it was a bad picture but ….) and sent it to Tenley, with “I love you.” I needed her to know, and right-that-very-moment.

Child Loss

Service Celebration (Graduation) Day Spring 2016 Photo Credit: DisneyHousing SnapChat Account

Taking Action

One of the things the parents in the parents’ group do is take pictures of the kids in the program when they are at a Disney Park, and post them for the parents who are far away and can’t easily visit. I will admit I am a failed Mamarazzi. If I am with Tenley, I know she doesn’t want me to make a big deal out of a fellow College Program kid. When I am not with Tenley, I simply struggle with the extroverted energy it requires, and we’ve all learned over the past several months that we can’t just pull a kid out of the work assignment to take their picture — this is their work, not summer camp.

But one parent chimed in who knew I was at Main Street, told me the name of her son and what he looked like, and said she would love a picture.

Knowing one mom and dad out there just got the worst news they will ever get spurred me past the introversion, the inability to read nametags without my glasses on, and all the other objections.

One mom got a picture of her kid.

I don’t know any details about the young man who passed away except for his gender and which complex he lived in.

Update as of 5 pm on 5/15/16: Condolences to the family of William Gracia. There are more people praying for you than you could ever know. For anyone who wants to read more about Will, and how to help (his family has requested prayers and consideration of help with funeral expenses), click here for more information. ~ pk

But a higher power than us knows, and I am sure the family could use your prayers and good intentions as they walk their road of grief.

And the next time I feel inclined to spend some negative energy on something that is inconsequential long-term, I am going to remind myself to focus on what matters most.

Ironically, this incredible, upbeat, profoundly sentimental video was released today (pro-tip: for someone you know, fast forward to 15:07, 46:13, and 1:07:06). Thank you, Sharon Costello, for putting this together. Your love for our children (and us) shines through in every frame.

thoughtful-thursdays4

Amazon $100 Gift Card Giveaway!

Amazon Giveaway

CONFESSION: I came very close to ordering washcloths from Amazon the other day. Washcloths, people!

Why did I almost order washcloths from Amazon? Our current supply is very low, the ones we do have were all dirty or had gone missing, and the almost instant gratification of pressing “order” and knowing a colorful stack of fluffy, clean washcloths would be on my doorstep within two days thanks to Prime was almost more than I could resist.

Amazon GiveawayI did resist, however, and am happy to report I found clean washcloths deep in a crevice of laundry mountain.

Whatever you need instant gratification for, whether it’s routine bathroom linens, the latest best seller, or a kindle, wouldn’t a $100 Amazon gift card help?

I am joining other great bloggers in a giveaway! Here’s the scoop:

AMAZON GIVEAWAY DETAILS

Prize: $100 Amazon Gift Card

Giveaway organized by: Oh My Gosh Beck! (Please email becky@ohmygoshbeck.com with any questions.)

Rules: Use the Rafflecopter form to enter daily. Giveaway ends 5/26 and is open worldwide. Winner will be notified via email.

Are you a blogger who wants to participate in giveaways like these to grow your blog? Click here to find out how you can join a totally awesome group of bloggers!

a Rafflecopter giveaway

 

Everybody Matters: A Book Review

Quick! When you think “perfect place to work,” what workplace characteristics come to mind? Lucrative compensation? A great product? How the idea of saying “I work for [insert name of organization here] makes your soul leap?

I don’t think there actually is a perfect place, but Everybody Matters: The Extraordinary Power of Caring for Your People Like Family captured ideas and concepts about management that are surely worth a try.

Book Review

It took me a long time to read this book, so the processing of its tidbits happened in small “a-has” rather than instantaneous epiphanies. This pacing was well-timed given my two-year odyssey of trying to process my choice to leave my full-time job and evaluate my next steps.

The Power of Everybody

Because it took me so long to read this book, I had the opportunity to type the title repetitively as I logged my “Friday Reads” on Facebook and Twitter every Friday. Almost every time, I could remember the “Everybody Matters” part but I am sure I mangled the rest (which is technically “The Extraordinary Power of Caring for Your People Like Family”), never remembering if it was “extraordinary,” “incredible,” or some other superlative! As the book states early on, though, even if I couldn’t remember that level of specificity, “everybody” really does mean “everybody,” and “not just the fortunate few or the exceptionally talented.” 

The Power of Clear Communication

There is a lot of writing out there about clear expectations and how if you don’t have a goal, you probably won’t get there. I love how this book took that concept one step further — how clear expectations are the catalyst that can help people motivate themselves.

“When people know their goal, they are inspired to express their gifts, and they discover capabilities they didn’t even know they had.”

I also appreciate the organization’s utilization of the power of storytelling, self-awareness, and vulnerability: “We believe that real people telling real stories creates real learning.” I concur!

The Power of an Abundance Mindset

Many of the businesses Barry-Wehmiller acquired had been run into the ground, organizationally, financially, and morale-wise before the acquisition. One of the most challenging hurdles Barry-Wehmiller faced was helping staff in the newly-acquired organizations believe that business could be about more than budget reductions and process modifications designed to cut corners.

We don’t have to win every project. We need to enter into responsible relationships with responsible people who value what we bring to the table.

 

The Power of Honoring Life Outside of the Workplace

This topic is huge to me. As a worker who has recently transitioned from a “traditional” workplace to a virtual one, I have been thinking even more than previously about the configurations of the work parts of our lives and the non-work parts of our lives. The way we divvy up our energy is simply not black and white.

The authors write, “We don’t draw a line between behaviors within the workplace and how people can apply them at home. What surprises participants is that we encourage telling stories about our home lives as much as we talk about the things we do in our leadership roles at work.”

The passage below is not so much about time and energy as it is about the actual essence of the self. I love it:

An important take-away for participants learning our approach to leadership is that they can be — indeed, must be — the same person at work that they are at home. They don’t need to wear a mask to work. The Leadership Checklist is not just for the eight or ten hours people spend in the office or in the factory. It’s for all twenty-four hours and every aspect of their life.

The Power of Reciprocal Commitment

The book interweaves a theme throughout about how co-workers should regard one another and their roles. In their Leadership Fundamentals classes, “We ask participants to set their organizational identity aside for the duration of the course; they don’t know if the person next to them is a CFO or a plant leader…..We specifically say, ‘Please do not talk about your title or the actual day-to-day work that you do. We want to know who you are as a person.”

Along with that effort to peel away “title” identities for the purpose of learning and growing, the authors remind leaders, “if you think you are too busy to give time and energy to your people, then they’re too busy to give time and energy to you. It is a balanced equation.”

The Power of … Well, POWER

As I mentioned above, when an organization is in the business of acquisitions, there is a constant “newness” for the personnel at the acquired organization. Reading these sentiments made me think of a time in my previous organization. I had a new supervisor, who reported to the Executive Director. We had been discussing some decision that had to be made, but apparently my co-workers and I were consistently expressing a tone of “but what if the Executive Director doesn’t want it that way?” You could have heard a pin drop in the room after he asked:

Why is everyone so afraid?

I can only imagine the fear at an organization that has experienced adversity after adversity, broken promise after broken promise. Therefore, I appreciated this sentence: “The cycle of caring begins with you,” as well as “since when do you need a memo from corporate that tells you that it is acceptable to be good stewards of the lives in your care?”

It is hard to build trust again after it has been broken repeatedly. That’s why it was so heartwarming to read one person’s opinion on page 229: They’ve done everything they said they were going to do.

Finally, something I think about often as I watch my 16- and 19- year olds grow up is personal accountability. I see them and their peers simultaneously sharing minute and intimate details of their lives with an extremely broad array of people via social media, but also being disconnected from looking people in the eyes, having to research facts without Google, and not necessarily having defined long-term goals (not that you have to have that when you’re a teen, it just seems different than the outlook I had at their ages). I hope they grow to understand this: 

I am the message.

These four words, to me, show recognition that you may be “fed” information, given instructions, old where to go and what to do. But ultimately what the world sees is the message through you. You are the message, in everything you say and do.

And when it comes to messages, everybody’s extraordinary message does indeed matter. 

Book Review

All proceeds from the sale of the book are being donated to Our Community LISTENS, a nonprofit dedicated to bringing powerful Communication Skills Training to communities throughout the United States.

This post is a response to Kat Bouska’s writing prompt: BOOK REVIEW! Book Review

NOTE: I was given a complimentary copy of this book for review purposes. These effusively positive opinions are all mine.

 

Florida 529 Savings Plans are Big!

Disclosure: This post is sponsored by the Florida Prepaid College Board, through my role as a Believer Blogger. All thoughts are my own.

Eight dollars and ninety-seven cents. 

Florida 529 Savings Plans

I am not proud of the fact that this is the balance of my college sophomore’s Florida 529 Savings Plan.

Years ago, I opened a Florida 529 Savings Plan for her at a time when my employer was offering to match my contributions. When our family experienced several financial challenges (too much debt compounded by job loss), I stopped making contributions to the account and withdrew most of what had accumulated, since we were in survival mode.

529 Savings Plans Fill Gaps

To be clear, we were ahead of the college finance game compared to many Florida families. We were extremely fortunate that my parents had generously purchased Florida Prepaid contracts for our children when they were infants (more on that here and here).

Two years into my daughter’s college experience at Valdosta State University, though, and just over a year before my youngest child graduates from high school, I think often of the additional “breathing room” I would have if I had kept up my Florida 529 Savings Plan contributions (and unlocked my employer’s matching contributions). We could have avoided the student loan debt we have incurred.

By “breathing room,” I mean expenses like:

  • tuition
  • mandatory fees
  • room and board
  • textbooks and supplies
  • computers
  • other equipment that is required for enrollment

One small hurdle when I opened my children’s Florida 529 Savings Plan accounts was the minimum required contribution. The Florida Prepaid College Board has removed the minimum contribution requirement. You could start with, for example, $8.97.

How is a Florida 529 Savings Plan Different from a Prepaid Plan?

  • Unlike Prepaid Plans, the Florida 529 Savings Plan does not have a set payment amount or schedule.
  • A family can contribute as much or as often as desired, and accounts can be opened at any time. There is no minimum contribution to open a Florida 529 Savings account, and there are no application fees.
  • The biggest difference between the two is that the Florida 529 Savings Plan is subject to fluctuations in the financial markets, while the Prepaid Plan are is guaranteed by the State of Florida.
  • There are 11 investment strategy options, including an age-based option that gets more conservative as the beneficiary gets closer to college age.

To learn more about Florida 529 Savings Plans and the Prepaid Plan, please click here.

Opening a Florida 529 Savings Plan is Simple

If you don’t have a Florida 529 Savings Plan already, click here to start!

You Could Win a $529 Scholarship!

The Florida 529 Savings Plan Scholarship Program is new! In conjunction with 529 College Savings Day (observed on May 29!), it will award 10 winners a $529 Scholarship deposited into a Florida 529 Savings Plan account. Families can enter to win between May 1 and May 29, 2016 via this link!

Only legal residents of the state of Florida who are currently over the age of 18 are eligible to enter. Winners will be selected from among all eligible entries via a random drawing to be conducted on June 1, 2016, at 3:00 p.m. Eastern Time.

A Lesson Learned

I wish the balance on my daughter’s 529 Savings Plan was $897, $8097, or more instead of $8.97, but it is not. If you are at an earlier stage of planning for your child’s college expenses, I simply urge you to consider the role a 529 Savings Plan can have for you.

If nothing else, go for the scholarship!

Florida 529 Savings Plans

 

Motivation-Monday