Wednesday, November 26, 2008
The end-of-year holidays are traditionally a time for us to give thanks, and enjoy the company of our friends and family. This year, I'm joining health bloggers around the world to promote the One Slide Project from Engage with Grace.
If you're like me, you're not clear on the end-of-life wishes of your loved ones. Maybe you're not even sure of your own wishes. Engage with Grace is encouraging people everywhere to initiate this very important conversation at a time of year when loved ones are at the forefront of our minds. The following was written by Alexandra Drane and the Engage with Grace team. To learn more, please visit www.engagewithgrace.org.
(Thanks to Laurie at A Chronic Dose for bringing this to my attention.)
Engage with Grace: The One Slide project
We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.
This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones know exactly or have a good idea of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.
But our end of life experiences are about a lot more than statistics. They're about all of us. So the first thing we need to do is start talking.
Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we're asking people to share this One Slide wherever and whenever they can ... at a presentation, at dinner, at their book club. Just One Slide, just five questions.
Let's start a global discussion that, until now, most of us haven't had.
Here is what we are asking you: Download The One Slide and share it at any opportunity with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.
Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.
Just One Slide, just one goal. Think of the enormous difference we can make together.
Sunday, November 23, 2008
First, thanks to all of you who have expressed your thoughts, prayers and support for myself and DBF. We are coping pretty well. Financially, we're ok - we had set aside some money for a downpayment on a house, so we have enough savings to keep us going for a while. With the help of the career outplacement services paid for by our former employer, I'm confident that we will not only find jobs, but jobs that we like. It may take a while, but in the meantime, we're enjoying our quality time together during the holiday season.
In the spirit of gratitude, Maureen of Being Chronically Ill Is A Pill has awarded me with the Lemonade Award!
The Lemonade Award is given to blogs demonstrating an attitude of gratitude. I know Maureen has been an inspiration to me, with a positive attitude despite her chronic illnesses. She goes out of her way to express how thankful she is for friends, family and even our veterans. I'm honored that she's passed this award along to me.
In keeping with the tradition of the award, I am passing the award along to these 10 bloggers:
- Deborah of Weathering Migraine Storms
- Eileen of My Life With Migraine
- Ellen of WEGO Health
- How To Cope With Pain
- Kelly of Fly With Hope
- Marijke of Help My Hurt
- Megan of Free My Brain
- Rosalind of Working With Chronic Illness
- Suzie of Sparkling With Crystals
- Teri of MyMigraineConnection (and others)
Saturday, November 8, 2008
This past Thursday, November 6, turned out to be a much more unusual day than I expected. It started out like any other, DBF and I walking to work together. About two hours after we got in, DBF called me to tell me had been laid off. And within the hour, I met with my team lead and an HR rep to find out I also would be let go. So DBF and I packed up our desks, gave some hugs goodbye to our coworkers, and went home jobless - along with 70 other people from our company.
Unfortunately, an economy in bad shape means that the architecture industry takes a bad hit. No one wants to build when money is tight. We were fortunate that we were both provided with a decent severance package, and had set aside some money for a downpayment on a house. The reason we were let go was purely economic, not performance-related. But it still hurts, and we're still quite upset about it. We didn't have any notice, so we had no idea what we were in for on Thursday morning.
I am not sad to see the end of this week. Keep your fingers crossed for us that we both find decent jobs quickly.
Thursday, November 6, 2008
"Alternative" therapy implies a complete replacement of more traditional approaches, such as medication or surgery. "Complementary" therapy implies an addition to these more traditional approaches.
A perfect example of this is the difference between the two acupuncturists I've seen. With the first, Dr W, I was pushed toward accepting acupuncture as an alternative therapy, as the only treatment. Instead of preventive medication to treat my Migraines, I would use acupuncture. I saw Dr W for two months, and by the end when I saw a decrease in effectiveness, she insisted it was the fault of the medication. "I can't treat the side effects," she would tell me, "so I can't help you if you stay on these drugs." This disagreement eventually became a big part of why I chose to quit acupuncture.
I quit acupuncture in January of this year, and since then, trialed a number of preventive meds, as well as Botox, and I still wasn't achieving the success in treatment I wanted. This led to me once again seeking a more holistic approach when I saw Dr P last month.
The acupuncturist Dr P referred me to, P, sees acupuncture as a complementary therapy. She has no problem with me taking medications. (Ironic, since the only daily drug I take is Zyrtec for my allergies. Everything else is either daily supplements or as-needed medication.) P also understands that for me, Migraine is a very genetic condition - my mother and sister both are Migraineurs, and we suspect my mom's sisters and mother also suffered from Migraine. With that kind of genetic history, a "cure" from just acupuncture is not feasible. Dr W didn't understand this, or didn't agree with it. P understands that acupuncture alone will not work, and adding supplements, massage therapy, Nia dance and medication is much more likely to be successful.
I am a big proponent of complementary therapies. I think they can and do help treat difficult chronic conditions. However, for most people - especially those with complicated cases - complementary therapy will not be enough on its own (as alternative therapy), but will work as part of a larger, holistic treatment regimen. The same way one medication intervention is also unlikely to work for the difficult cases, one complementary therapy is unlikely to work. Holistic - complementary - is key.
In case you haven't noticed from my increased posting, I am already starting to feel better. My head pain hasn't necessarily changed much, though I have had a few low-pain days where I had none before. I do have more energy. Not a huge amount, but enough that I've noticed and it makes a difference. I feel like my body is absorbing the new supplements better than the ones I took before, which is good, because I'm swallowing upward of 20 pills a day. I'm having some mild side effects from both the Petadolex and CoQ10, but they seem to be dissipating (only reappearing when I've increased the dosage). I've yet to start the Nia dance, but I have a few options for classes that I will be trying the next week or so.
While I am hoping for continued success with my new treatment regimen, I also realize it's likely I will have to add another preventive medication (specifically, a prescription drug) to my regimen in the future. I'm okay with that. Hopefully, the treatment I'm trying now will mean I need less prescription medication intervention in the future.
Monday, November 3, 2008
Today kicks off the virtual book tour for a must-read book, written by Rosalind Joffe and Joan Friedlander: Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!
Rosalind writes blogs at Working With Chronic Illness and Keep Working, Girlfriend, along with her web-based business, CI Coach. All are wonderful resources for anyone living and working with chronic illness.
For today's guest post, I asked Rosalind to talk about the five best and five worst things a woman with chronic illness can do for her career. All of these ideas, and much more, can be found in her book, so be sure to check it out. Tomorrow, stop by fellow Migraine blogger Diana Lee's Somebody Heal Me for the next stop on the virtual book tour.
My Top Five suggestions for managing your chronic illness in the workplace
Stay on top of the situation. When chronic illness (CI) symptoms are causing you to screw up in your job because of a CI, have a “sit down” with yourself and figure out what you want to have happen and what you can do to make that happen.
Get help when you need it. When you can’t accomplish a task on time or on your own, shut down the self critic and replace it with the following questions: what do I need, who can help me best, and what should I say when I ask?
Be mindful of how you discuss your CI. When you have to talk about your CI with colleagues, supervisors or people who work for you, keep your emotions to yourself (even if someone asks how you’re doing).
Be as sure as you can be that you can do the job. When you take a new job, keep your CI symptoms in mind and be realistic about whether this is something you can do on your good days and bad. You’re not in the astrology business so try to predict the future. But you can base your best guess on what you know rather than fears or wishful thinking.
Develop your talents. The best insurance you can have (and we with CI know that nothing is for sure) is to be the best you can be at what you do. When your talents add value, people will be more likely to support you when the CI is “acting up”.
My Top Five worst things you can do to manage your chronic illness in the workplace
Incessantly referring to chronic illness and talking endlessly and mindlessly about living with a CI, will cause people to tune you out. When you talk about your CI to anyone and everyone who will listen JUST because it’s on your mind, people stop listening. Even worse, they can easily start to doubt that you can really be as sick as you think.
Take a two week vacation one week after you return from a short disability leave. You could create bad feelings, Especially if everyone around you hustled to get your work done.
Wait until you’ve screwed up royally over and over again before you tell your supervisor that you can’t do the job in the time frame it’s expected because the CI is getting in the way.
Never volunteer for the extra assignment, offer to help others when they need it or do anything that shows that you’re a team player.
Keep to yourself and fail to develop relationships with co-workers because you feel ashamed, guilty or worry that someone will discover you live with a CI.
Rosalind, president of cicoach.com (http://cicoach.com), is the coauthor of Women, Work and Autoimmune Disease: Keep Working, Girlfriend! and her blog is http://WorkingWithChronicIllness.com Feel free to reproduce or share the Top 5 list as long as you give her attribution.
Saturday, November 1, 2008
I was therefore (pleasantly) surprised to learn that fellow blogger Leslie of Getting Closer to Myself awarded me with the Kreativ Blogger Award!
Leslie is one of my favorite bloggers, and has been very supportive in the short time I've known her. So Leslie, many thanks for giving me this award!
As part of the Kreativ Blogger Award, I'm to list six things that make me happy, and give this award to six other bloggers.
Six things that make me happy:
- My very supportive family, friends and boyfriend.
- My adorable kitty, Madcat.
- The kindness, compassion and understanding of the entire chronic illness community.
- Sharing my own story to connect with others.
- Knitting, crocheting or sewing.
- A nice warm cup of tea.
- Diana, of Somebody Heal Me
- Ellen, of WEGO Health
- Janet, of The Migraine Girl
- Megan, of Free My Brain From Migraine Pain
- Suzie, of Sparkling With Crystals
- Teri, of MyMigraineConnection (and others)
Thanks again to Leslie for honoring me with this award. I encourage all of my readers to check out my choices, as well as the other wonderful blogs in my blog roll.