Showing posts from January, 2012

Fibromuscular Dysplasia's Patient Registry Good For Research, But Is It Good For Patients' Quality of Life?

Fibromusclar dysplasia patients learned that principal investigator, Dr. Jeffrey Olin of Mount Sinai School of Medicine, would be presenting initial findings from the FMD patient registry at the International Symposium on Endovascular Therapy mere hours before his talk. Not that it mattered much. Patients weren't part of the ISET program. We didn't get to hear what Olin said. We—the people in the study—got a news release. Or at least there was a release put out and a few subsequent health news articles, which those who were paying attention shared around the FMD community.  To any FMD patient, the findings were less than surprising. Of the 339 patients studied, 91 percent were female—a fact evidenced by any FMD social community , including the one for which I am a co-founder and moderator called FMD Chat . More than 95 percent of patients suffered one or more of the following symptoms: high blood pressure (66 percent); headaches (53 percent); rhythmic ringing in ears (30

Being Better to My Body: Day 1

I went to the grocery store yesterday. I spent $114.08 (but saved $32.55 thanks to in-store discounts). My list reads as such: Kellogg's Raisin Bran $1.93 Kellogg's Raisin Bran $1.93 Quaker Oatmeal Squares $3.00 Quaker Oatmeal Squares $2.42 Mount Olive Garlic Dill Pickles $1.44 Mount Olive Polish Dill Pickles $1.44 Arnold Healthful Nutty Grain Bread $2.98 Laura Lynn Splenda Knock Off $2.48 Extra Apple Pie Gum $1.08 Bass Ale $11.97 (for the hubs) Daisy Light Sour Cream $1.38 Smart Balance Spread $1.88 Smart Balance Spread $1.88 Skim Milk $2.73 Weight Watchers String Cheese $4.18 Yoplait Light $.75 Yoplait Light $.75 Yoplait Light $.75 Yoplait Light $.75 Purina Dog Chow $12.48 Air Freshener $2.88 Air Freshener $2.88 Frozen Chopped Spinach $2.50 Frozen Chopped Spinach $2.50 Morning Star Black Bean Burgers $2.98 Morning Star Garden Veggie Burgers $2.98 Clementines $6.98 (splurge!) Berry Boost juice $2.50 Green Goodness juice $2.50 Smart Sausage Ita

Terrible Twos-day: Duo Edition

Shower singer or karaoke maven? Member of the choir or closet rock star dreamer? Add your voice to these musical duos, or if the neighborhood cats and dogs all run from your musical antics, perhaps it is best if you just hum along. Jack and White - Double Trouble She & Him - Don't Look Back Norah Jones & Dolly Parton - Creepin' In Bonnie Raitt and John Prine - Angel From Montgomery Taj Mahal & Ry Cooder - By & By (Poor Me) Ali Farka Toure & Toumani Diabate - Sabu Yerkoy The Chemical Brothers - Swoon Get your Tuesday on. 

We Are What We Eat

I didn't exercise today—or really any of the days before that. Exercise hurts. It makes me tired. I am afraid of doing too much and hurting myself. I made sugar cookies last night. I used real butter and real sugar. There are no more left today. I had a burger and fries for dinner tonight. The burger had cheese on it. I had a side of ranch for the fries. I have had triple bypass surgery. I have had a stroke. Do you blame me for my disease? Yes. I would not expect you to do otherwise. You do not understand my disease. My disease has no known cause and no known cure. And despite my having made decisions not to sweat off my calories consumed and not to eat smart, the fact is this—my disease manifested when I was a scant 95 pounds, horseback riding six days a week, and eating next to nothing because the pain I experienced upon eating was too much to bear. My disease, though vascular, does not involve plaque, or heart attack, or obesity. My disease is the result of abnormal

World Rare Disease Day, Grand Rounds, and The Afternoon Nap Society's Healthcare & Social Media Mashup

A special collaboration among the RARE Project, Grand Rounds, and The Afternoon Nap Society will use social media to connect patients and healthcare providers while raising awareness of World Rare Disease Day . As a rare disease patient and healthcare blogger, I saw a unique opportunity to facilitate this collaboration, which will bring RARE Project’s rare disease blog hop together with Grand Rounds, an online collection of each week’s best in healthcare blogging. As a participant in the RARE Project’s Jan. 30 blog hop and as host of the week’s edition of Grand Rounds, The Afternoon Nap Society will serve as crossroads for readers. Those readers following RARE Project blog hop posts will be linked to Grand Rounds’ featured posts, and those readers who follow Grand Rounds will be linked to the RARE Project blog hop as one of the weekly edition features. “Grand Rounds has always sought to highlight the best of the healthcare blogging community, and the RARE Project’s mission is certa

Stop SOPA, Stop PIPA

The Afternoon Nap Society is joining thousands of others in the fight against SOPA and PIPA. I urge you to oppose the Stop Online Piracy Act and the PROTECT IP Act. These bills will kill jobs and stifle innovation, undermine cyber security, risk censoring the American Internet, and provide cover for totalitarian regimes that want to undermine Internet freedom abroad. Learn more. STOP SOPA

The Day Valentine's Day Died

To lose a loved one on a holiday means that each year the anniversary rolls back around with festoons made grim by association. I don't remember how old I was when my grandmother died, but I remember that it was on Valentine's Day . Mema had had a heart attack and was staying with my parents and me afterwards to recover. She had been doing well, but another episode landed her back in the hospital. My mother, father, and I were all dressed up and ready to go out the door for a Valentine's Day dinner together when the phone rang. I didn't know it at the time, but it was the doctors saying that Mema's heart had failed again. If my mother wanted to say goodbye, the doctors could keep Mema alive (or at least as alive as she could be) until my mom got there. My parents dropped me off at a friend's house. They didn't come back to get me. I remember the phone ringing in the middle of the night, and I somehow knew that the call meant Mema had gone. In the morni

On A Scale of 1 to 10, How Would You Rate Your Pain?

It was 3 a.m. when I arrived at the locked doors of the rural hospital that was my only option for miles. Doubled-over and panting, I pressed the intercom button and gasped my request to be let inside. There was a buzzing click. The doors parted. Instead of meeting a nurse, I met no one. The registration desk was vacant. There was no on in the waiting room. I paced about, flapping my hands, and growing increasingly uneasy. Where was help when I needed it? A doorway on the other side of the registration desk opened, and a woman in scrubs beckoned me inside. The woman appeared entirely unconcerned with my state of unmistakeable physical duress. While I tried to answer her questions about insurance and previous surgeries, I buckled from the pain. Still non-phased, the nurse continued my interview as I, down on my knees, clung to a chair and answered her questions with my eyes squeezed shut.  Finally, taken into the ER, I was told I would have to wait for the only doctor working