Thursday, December 24, 2015

Managing Family Relationships - Holidays and Beyond

Merry Christmas Eve!

I just wanted to share something that might help make your holiday season easier before I head off to start my own family festivities.

I wrote this article for the ProHealth website - Managing Family Relationships - Holidays and Beyond. It's all about navigating the tricky waters of family gatherings during this season (and all year round) when you are chronically ill. It is based on my own experiences and some hard-won things I've learned over the past 13 years. I hope it helps ease some of your holiday stress so that you can not only endure family gatherings but maybe actually enjoy them.

I am taking a blogging break until the beginning of the new year, so enjoy the holidays with your family and Happy New Year!

Some of my family and I 2 weeks ago

Monday, December 21, 2015

Movie Monday 12/21 - Scrooged & Other Holiday Movies

All four of us came down with a stomach virus last week (actually 12 extended family members in total got it!), so we spent last Monday sprawled all over the family room in couches, recliners, and the floor, sipping water, nibbling crackers, and watching mindless TV. This was a good movie for that state of mind!

We watched Scrooged, a 1988 version of A Christmas Carol, starring Bill Murray. You probably already know the general storyline! In this adaptation, Murray plays Frank Cross, a television executive willing to sacrifice anything to get good ratings. Christmas is coming and besides holiday specials like The Night the Reindeer Died starring Lee Majors, Cross has ordered his staff to put on a live version of A Christmas Carol, requiring everyone to work Christmas Eve. Of course, on that fateful night, Cross himself is visited by the ghosts of Christmas past, present, and future (with the Christmas Present ghost a small fairy played by Carol Kane). You know how the story goes. Karen Allen co-stars as Cross's ex-girlfriend, who remembers him when he was a good guy and not so corrupted by greed. There are some fun cameos here, like Mary Lou Retton playing Little Tim in their live version of the story! The movie was nothing spectacular, just a fun little bit of holiday fluff, with classic 80's SNL Bill Murray. Perfect for a day when we were wracked by fever and looking for some distraction that required no thought!

Some of our other favorite holiday movies include Love, Actually (one of the best!), The Holiday, National Lampoon's Christmas Vacation (more pure silly fun), Miracle on 34th Street (the original, naturally), and, of course, It's a Wonderful Life. My kids love Home Alone, of course, and I really loved The Family Stone.

We are more likely to watch old Christmas TV specials than movies this season - we have a large collection on DVD and, yes, many on VHS: shows like Santa Claus is Coming to Town, Rudolph, Frosty the Snowman, A Charlie Brown Christmas, and various Muppet Christmas Specials (our favorite is the 1998 A Muppet Family Christmas - cracks us up every time!). The Snowman is a beautiful video to watch during the holiday season, adapted from a picture book and featuring gorgeous colored pencil drawings and beautiful music.

What are your favorite holiday movies and/or Christmas specials?

Thursday, December 17, 2015

Great Article on ME/CFS in O Magazine

"We are here! We are here!" That's a quote from Horton Hears a Who and my way of telling you that I'm still alive, despite my absence from the blog lately. I was wrapped up in holiday preparations last week, then we spent the weekend celebrating an early Christmas with extended family...and 12 of the 13 of us there this weekend came down with a nasty stomach virus, including my family of four! I was the last one to recover, but I seem to be much better today, so fingers crossed.

I wanted to let you know about a very good article on ME/CFS published in O, The Oprah Magazine in December. This is significant for several reasons:
  • It's rare for the mainstream media to cover ME/CFS,
  • It's even rarer for them to get it right and publish an accurate article that describes the seriousness of our disease,
  • And O Magazine gets major exposure, with a circulation of 2.4 million!
You can read the full article at this link. It spotlights a patient who went from being an active, successful professional to being incapacitated, and it discusses the infectious and immune roots of the disease. It also includes interviews and references to two top researchers, Dr. Jose Montoya and Dr. Mady Hornig, both of whom are investigating infections and the immune system with respect to ME/CFS.

My only qualms with the articles are very minor. It refers to the disease as CFS throughout (though admittedly, that is still its official name according to the CDC), and the title is a bit cringe-worthy for its prominent use of the word "tired" to describe how ME/CFS makes you feel. But anyone who reads the article will have no doubt that it is a serious and debilitating disease. Overall, it is a big win for the ME/CFS community. In addition, given the size and popularity of O Magazine, it is quite possible that other women's magazines will follow its lead.

I think you can still find copies of the December issue where magazines are sold (sorry, I meant to post this two weeks ago!), but you can read the whole article online, share it, comment on it, print it, etc.

What do you think of the O Magazine article?

Tuesday, December 08, 2015

TV Tuesday 12/8: Crazy Ex-Girlfirend

In this hectic, stressful season, we can all use a good laugh now and then. Crazy Ex-Girlfriend, a new TV show on CW, is my new favorite escape - it is 100% silly fun with no redeeming value!

In the first episode, we meet Rebecca, a seriously neurotic New Yorker with plenty of issues. She is a high-powered lawyer (graduated top of her class at Harvard), but she's not happy. She loved the theater, but her mother convinced her to become a lawyer and now her job is her whole life. Then she bumps into Josh on the street. She and Josh were teenage sweathearts one summer at an arts camp; they had a summer fling and then never saw each other again. Running into Josh reminds Rebecca of all that she doesn't have: a boyfriend, friends, happiness...a life. So when her firm offers her a partnership, Rebecca shocks everyone by saying no, packing up, and moving to West Covina, California, the small town where Josh lives.

Oh, yes, moving to the town where your high school boyfriend lives after seeing him on the street once is pretty crazy, but she insists she didn't move for Josh, just for the kind of life he has (she's lying). She finds an apartment and joins a small law firm that is thrilled to have someone of her caliber. Rebecca quickly becomes friends with Paula, the paralegal she works with, and chats up a local bartender who is friends with Josh.

Probably doesn't sound all that silly yet, right? I saved the best part for last: it's a musical. Yes, Rebecca and the rest of the cast burst into spontaneous song  - not just singing but huge production numbers - at the oddest moments. It is all firmly tongue-in-cheek and often very funny. At the very least, it will put a smile on your face because it is simply so absurd. And these aren't just any ordinary songs. In one episode where Rebecca brings a stranger home to her apartment, she sings Sex with a Stranger, an outrageous decidely un-sexy song that includes the chorus, "Please don't be a murderer." One of my favorite songs from an early episode is The Sexy Getting Ready Song, which shows  - graphically - the crazy lengths that women go to to look good for men. Here's the clip (just be forewarned - best to skip this if you are easily offended):

Crazy Ex-Girlfriend is like an R-rated Glee that never takes itself seriously. It does have an occasional heart-warming moment, but mostly it is just silly, slightly raunchy fun - just what I need right now with overflowing to-do lists!

Crazy Ex-Girlfriend is available for $1.99 an episode on Amazon Prime, with episodes 4 -8 available free on the CW website or at IMDB. I wouldn't worry too much about jumping into the middle of the series - you'll catch up quickly - it's just not that deep!

Monday, December 07, 2015

Movie Monday 12/7: The Age of Adaline

Sorry for missing a few weeks of Movie Monday – things have been so hectic with the holidays, family, and travel! No time for watching movies or reviewing them (or much time for blogging either). We did have one quiet weekend at home this week, before we start another round of travel and family gatherings, so my husband and I enjoyed a movie Saturday night.

We watched The Age of Adaline, a movie I have wanted to see ever since we saw the preview in a theater back in March! Adaline, played by Blake Lively, never ages. She was born in 1908 and had an accident in the 1930’s that caused her to stop aging. Since then, she has stayed the exact same 30-ish age and looks just the same, even as her daughter grows up, passes her up, and gets old alongside her (the older daughter is played by Ellen Burstyn).

Early on, Adaline discovered that when the government figures out her secret, they want to study her, so she has coped all these years by moving every ten years and changing her identity. She is currently living as Jenny in her hometown of San Francisco, though she is preparing to change to Susan and move to rural Oregon soon. She lives a quiet life working in a historical library and avoiding getting too close to anyone. Things change, though, when she meets Ellis, a wealthy philanthropist who is attracted to her from the first time he sees her, played by Michiel Huisman (Sonny from Treme).

Adaline struggles with her usual rules and wonders whether she should stick to her plan to disappear in a few weeks or give in and fall in love. She tries to keep her secret from Ellis, but when an old lover from 50 years ago, played by Harrison Ford, recognizes her, her careful façade begins to fall apart. It’s a great cast, and the actors all did a wonderful job. San Francisco makes the perfect backdrop to this story as it moves through one hundred years – even the city changes as Adaline stays the same. I loved this unique love story with a twist, and my husband enjoyed it also (though I think I liked it more - not much action in this movie).

Have you seen any good movies lately?

Tuesday, December 01, 2015

Giving Tuesday - ME/CFS Organizations to Support

After the flurry of spending on gifts yesterday for Cyber Monday (hopefully, you are donating WHILE you shop, too!), now it is time to turn our attention to less material things for Giving Tuesday, a day devoted to donating to and supporting charities.

For an extra gift to yourself, consider donating to an organization that supports ME/CFS patients and/or research. There has never been a better time - or more need for funding - for ME/CFS research. There have been so many exciting breakthroughs in the last few years!

Here is a list of ME/CFS organizations to consider donating to today - and all year-round:
  • Solve ME/CFS Initiative - one of the leading research funding organizations in the world (they have funded a lot of important research over more than two decades) and creator of the ME/CFS BioBank and Patient Registry, and if you donate TODAY, your gift could help them get a $50,000 gift from an anonymous donor! I just made my donation. Here's more info on the organization and the donation page. While you're at it, sign up to participate in the BioBank and Patient Registry to help move research forward in another way.
  • Open Medicine Foundation - and their End ME/CFS Project, including a study focused on the severely ill - a top-notch research organization with some of the top ME/CFS doctors in the world. More information on the organization and the donation page.
  • Simarron Research - an organization involved in a wide variety of ME/CFS research projects, including the ground-breaking immune study first published earlier this year from Columbia (the second half of that is still ongoing). More information on the organization and the donation page.
  • The Whittemore-Peterson Institute for Neuro-Immune Disease - though we haven't heard a lot from this organization since their XMRV theory was disproven (that's the way science works - new theories pop up and they are investigated and often discarded in order to move forward), they still have a number of important research projects in progress. More information on the organization and to donate, click on the blue Donate button.
  • Health Rising - this is not actually a charity, but Cort Johnson, an ME/CFS patient himself, works tirelessly to seek out the latest research and information on ME/CFS and pass that along to other patients. I don't know how he manages all that he does, but I am grateful! His website ("Finding answers for ME/CFS and FM") is one of the first places I go for information, and he does accept donations (Donate button on his homepage) to help him continue his important work.
  • Invest in ME (UK) - the major UK organization for ME/CFS, created by patients and parents of children with ME and focused on funding biomedical research, education, and lobbying. More information on the organization and the donation page.
  • The 25%ME Group - a UK organization that provides services to those who are most severely affected by ME. More information on the organization and the fundraising page, which includes a Donate button and information on other ways to help.
  • Tymes Trust - "the longest established national UK service for children and young people with ME and their families."  They work with doctors, teachers, and other specialists to support children with ME. More information on the organization and the donation page.
  • ME/CFS Australia (SA) - provides services and information, including support groups, an information line, and youth support, to ME/CFS patients in Australia. More information on the organization and the donation page.
  • Emerge Australia - this organization is mainly an advocacy group that "advocates for, educates about, and provides information on" ME/CFS in Australia. More information on the organization and the donation page
Wow, there are so many great organizations working tirelessly to help ME/CFS patients! And I'm sure I missed some - if so, please tell us in the comments section.

Take a moment to choose one of these worthy organizations to donate to - if each ME/CFS patient only gave $5 to an organization, we'd have millions more dollars for research and other services!

And if you don't get to it on Giving Tuesday (December 1), I'm sure any of these organizations would appreciate your donation any day of the year.