Patient Advocacy, Part III

Nov., 2009

Due to the pain medication Jeff was on, it would be two full days before my husband spoke more than a few words to me that second visit. But I was getting answers this time around; doctors came and went and with every visit, I had another piece to the puzzle because I spoke up. I was relieved to find out that there was a good chance that this was an isolated case. The doctors believed that his pancreas was traumatized too soon after the surgery - Jeff had felt a "pop" when the dog jumped on him.

While Jeff still struggles with some digestion issues and I suspect a bit of exhaustion every night he arrives home from work, he is on the mend. He's also one not to complain. And I've stopped complaining about that first hospital stay. I've finally figured out that there is only one person who was truly in charge of Jeff's well-being: Me. If he needed something, I tried my best to make it happen. I've realized that advocacy is not about taking a back seat, it's all about firmly taking the wheel.  My advice to you:

• Know the names of every person in charge of your loved ones care.
• Ask questions, over and over if needed.
• Don't be afraid to step on a few toes if you have to.
• Do whatever "it" takes.
• Be strong, and ask for help from family and friends so that you are able to assist in the hospital or home care.
• Remember: You are the customer in every way, shape and form - you're paying for the hospital stay and their doctors' salaries, in the form of insurance premiums. You are paying for every test they run, and all medications.
• Finally, take care of yourself; in the scheme of things, an hour-long yoga class will empower you to take charge, so that you have the energy and power to care for your loved one, both in the hospital and when they arrive back home. It's the best gift you can give yourself and your family.

It took some time, but I realized that advocating for Jeff was not much different from running my business: Asking the right questions of the right people, having the right answers to probing doctors, keeping constant, open communication, and knowing when to call in reinforcements. Relying on others is the hardest part for me, combined with not knowing something that I knew somebody, somewhere already had an answer to.

I've modified my hopes and prayers some as I complete this post. While they still include the continued recovery and health of my husband and family, they are also geared towards you. That YOU learn how to advocate for others, especially family when facing a health crisis. That you learn from my mistakes, as well as from my successes. And finally, that you never have to worry about becoming an advocate for a loved one.

But if you do, it'll be a tough job, with big results.

Breath Work

I wanted to share something with you that has been graciously shared with me. I was recently reminded that each and every one of us is here on this beautiful Earth for a special and unique purpose, and how we honor ourselves and our time here is quite important. Sometimes that reminder can come from an unexpected source. It has raised the importance of keeping my eyes and ears open and taking time to breath, listen and be grateful for the messages that come along each day. That's all that really Matters.  Thank You Joan.

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” -Marianne Williamson from A Return To Love: Reflections on the Principles of A Course in Miracles

Patient Advocacy, Part II

I desperately wanted to be  part of what was going on with and around Jeff, but I was stubborn. I'd  learn my lessons the hard way and spent more than a few nights awake, alone and frustrated.  Procrastination is not in my vocabulary, and my clients and family  will attest to that. I want results and I want them fast, and I do  whatever it takes to get them. I'm not very good at relying on others to  give me the information I need. The question of what was causing the stomach pain was answered quickly:  The reason behind it was much slower to come. After CT Scans, Ultra  Sounds, an MRI and finally an Endoscopy, the culprit was revealed three  full days later: The Gall Bladder. It was uneventfully removed a few days later.

You can imagine my surprise, when, just five short weeks late, we made our second second visit to Westerly Hospital - this time in the morning.  While I felt  like a pro, the two visits were like night and day, literally and  figuratively. The nurse in the ER was on top of things and I knew what  was going on every step of the way. I was allowed to stay with Jeff  during the tests because this time, I asked. I knew where to find warm blankets when Jeff got cold, I knew where I could (and couldn't) get the best cell phone signal, and I called on family to help out with  Maia so I could concentrate on taking care of Jeff.

Anthropology and Social Media...Like Peanut Butter and Jelly

I was recently in a position to meet with many local business owners from around Rhode Island, as I taught an introductory class on Organic Online Marketing, with an emphasis on Social Media.  I had met a few of the owners before at networking events, or had simply spoken to them on the phone in a different context; others were new to me.  For that reason, I spent a few minutes introducing myself, and sharing how I had come to be with them.  Now, I'd like to share it with you.

I first learned about social networks during a family vacation in Aruba about three and a half years ago.  My sister was extolling the virtues of Facebook.  I had just started my own business, so I was interested in cool, innovative ways to market businesses aside from the traditional, and typically expensive means, such as print.

It took me some time to grasp the message she had for me.  I signed up right away when I returned home, so that I could stay in touch with her in Massachusetts, but I still didn't get it.  I was so focused on me and what I wanted to use Facebook for, that I wasn't looking at the big picture.  And then one night, about six months later, I was watching the movie Apocolypto, an awesome adventure flick about the Maya people of Mexico.  While I found serious issues with the ending, I couldn't help but enjoy it, and it took me right back to my college days, where I had focused all of my energies and degree on that very subject:  Anthropology and Meso-American prehistory.

I was so inspired by that movie, that I decided to flip through some old text books that I couldn't bare to get rid of.  And then it hit me, like a ton of bricks.  Social networks were my research and studies of cultural and social connections times...millions!  Observation, evolution, research, the difference between qualitative and quantitative results from the relationships that are formed online.  I just needed to put it into perspective.

So in the end, I was hooked.  I found my niche in a huge industry where it's so very difficult to stand out.  A lot of people call themselves experts in their chosen field...and there are many people who claim to be experts in Social Media Marketing.  But I'll be honest with you...I'm not one of them.  There's no way I can be.  It changes and evolves so quickly, that I'm able to learn something new everyday.  While the hottest sites to place your business information are more or less stable, how to work with them and use them in an advantageous, yet thoughtful, conscious, and sensitive manner can be tricky.

I'm reading and researching every day, so that you don't have to.  I'm here to take what I see and read and use, and present the most helpful and valid information that I can.  I've been handling marketing in every way, shape and form for over twenty years.  You'll find lots of marketing and ad companies out there with similar experiences, but I have what I consider to be a HUGE advantage.  What makes me so special?  My anthropological background, and my ever-present interest in how people act and react with each other in social, online forums.  Those people become clients of yours and mine, and that keeps my work VERY interesting.

It takes a special person to convey what they know to others in a cohesive and exciting fashion.  I wanted participants to know that I cared, indeed was passionate about what I was about to tell them.  I truly wanted them to be as excited about their online adventure as I was, and that I wanted their business to grow from their time spent with me.  I'm positive that I succeeded.   

Patient Advocacy

I'm hoping (and praying) that I'm finished with a very tough job. No, it's not setting up a Google Campaign, or brainstorming a logo design with a new  client. What's the job, you ask? It's not what you'd expect. It's the  full-time job of advocating for my husband, who was hospitalized twice  in six weeks. After not feeling well on and off for about a month, I  came home to find Jeff writhing with stomach pain, a pain that would  take days of morphine drips to get under control. It's taken me a few  weeks to sit down and write this; admittedly, I took better care of my  family than I did myself during the ordeal. But it's important that I  share this with you, in the hopes of preventing future frustrations for  my friends, family and clients.

Our first visit to Westerly Hospital was in the early evening hours,  and getting information from the staff was like pulling teeth. I found  myself asking over and over "Where are you taking him?", "What's next?"  and "Any results yet?". Not a single bit of information came freely, and  answers would come in days, not hours. The doctors seemed like ghosts  to me; my visits in the ensuing days came too early or, more often then  not, I had "just missed" them. I made some critical errors though: I was  trying to take care of Maia as much as I could, trying to keep things  normal for her. But there was nothing normal about this situation; I  should have relied a lot more on my family.


To be continued...