Professional Patient

My Blurb Book Memorializing My Dad's Life is Complete

One year (to the day) after my father's death, I finished Remembering Clint, the Blurb book I created to memorialize his life. It's now available in the Blurb bookstore. It's not too fancy, but it is overflowing with love.

Thank you to the three readers who posted comments over the weekend:

Nancy and Lorne each commented on my Tips for Wearing a Cervical Collar post, and Mara had a question about my posted Dairy-Free, Egg Free Chocolate Cake Recipe. (Mara, I think the answer is - why not? Won't know until you try it.) These were wonderful interruptions to my otherwise grief-filled weekend - I had no idea how sad the one-year anniversary of the death of a loved one can be.

I have been consumed by this book project for the past month (by the book, and also by trying to work a few more hours each week). Now that it's wrapped up, I hope to pay more attention to this blog again.

Peace on Earth

My animals were being cute. 

Happy holidays to you and yours.

Vote, Vote, VOTE!

This year, the outcome of the presidential election could have far-reaching effects on our health care coverage. So get out there and vote tomorrow! Do your part. 

Not Sure Which Candidates' Health Insurance Proposal Is Better? 

The Kaiser Family Foundation website provides an objective side-by-side comparison of Obama's "universal" health care plan and McCain's "market" health care plan. View 2008 Presidential Candidate Health Care Proposals: Side-by-Side Summary from the Kaiser Family Foundation's health08.org website.

Need Help Getting Up to Speed on All the Issues on Your Local Ballot?

The League of Women Voters' vote411.org website provides voters' guides to the issues on your local ballot (including local and state special questions/referenda). Go to www.vote411.org, select "On Your Ballot", select your state, and then select your local voting district.

Remembering My Dad, Using Blurb Book Service

I don't often use this blog to promote the latest and greatest web tools and toys. Today is an exception! I would like to talk about Blurb BookSmart... software that allows you to quickly and easily create custom books that look fantastic and can be printed professionally at reasonable (ish) prices.

I'm using the software to design a book to memorialize my Dad's life. What he was to my family (father, son, friend, mentor, etc.), how he was to us (kind, loving, strong), favorite memories we have, best advice he gave us, etc. When we are finished, we will have a quality hardcover or paperback book (our choice) that we can put in a place of honor in our homes. And each and every person in the family can order one, if they want. Lots of people create scrapbooks after loved ones die; Blurb allows you to create something that everyone can have a copy of (no passing the scrapbook around or hand-making multiple copies of it), and that won't fall to pieces if you turn it upside down. And, if the dog eats it or (heaven forbid) it gets destroyed in a house flood or fire, you can always order another copy.

I love Blurb because I have always liked doing page layout (I helped with the yearbook in junior high and lit mag in high school), but I know I will never have the interest or skills to be a full-blown, fully-trained graphic designer. Blurb provides you with dozens of templates you can use to lay out your book. No guesswork required... what you see is what you get. The only caveat is that to do the real fancy-pants stuff in Blurb, you need high-res, large digital images to work with (i.e., photos from a digital camera). You can work with scanned versions of hard-copy photos as well.

Blurb comes pre-loaded with templates appropriate to a variety of book types: scrapbook-style books, wedding albums, yearbooks, blog books, cookbooks, and more. I think when I finish with my dad's book, I may start on a cookbook next. It would be nice to consolidate my endless, tattered pile of recipes I have printed off of the Web.

Hmm... I wonder if other people would pay me to lay out books for them using Blurb.... ? Someday, perhaps.

My apologies...

My apologies for taking so long to write something new. The past month has been overwhelming... I found out I was pregnant, only to miscarry a few weeks later. I want to write about the experience, but I haven't figured out WHAT I want to write about the experience. When I do, I'll put up a new post.

Thanks for your patience.

These Ladies Are Just SICK!

Back in the day, if you called someone "sick", it meant awesome, cool, amazing, outrageous. And these bloggers are just sick... but they also happen to be sick (as in chronically ill). I love these blogs' wit, humor, insight, and zest for life!

A Chronic Dose. Laurie is a twenty-something writer who lives with multiple chronic illnesses, including thyroid disease, celiac disease, chronic fatigue syndrome, bronchiectasis, and primary ciliary dyskinesia (PCD). Laurie is a writing instructor and her first book will be coming out in 2008.

Chronic Babe. Jenni at ChronicBabe has created an online community for younger women with chronic health issues who want to be their best. She is a Chronic Babe herself, coping with fibromyalgia, asthma, anxiety, Raynaud's phenomenon and GERD.

Gluten-free Girl. Shauna is a wonderful source of recipes and stories about gluten-free living. Shauna has written Gluten-free Girl (the book), and was a contributor on a Food Network show called The Power of Food.

Sick Girl Speaks. Tiffany at Sick Girl Speaks lives with cystic fibrosis and has had not one but two double lung transplants. She is a public speaker and workshop leader who has just published her first book, Sick Girl Speaks.

The Daily Headache. Kerrie has lived with chronic headaches for 20 years. Her blog has been a consistent wealth of headache information for more than 2 years, and shows no signs of slowing.

The Phoenix Zine. Amy lives with a glycogen storage disease that nearly killed her when she was 5. Now 25, she's living it up north of the border (she's Canadian) and has a relatively new blog about young life with chronic illness. She has many great ideas for managing stress... something we all can use!

Support ChronicBabe - Jenni's House Hit by Tornado

As if being chronically ill isn't hard enough, Mother Nature had to get it on the act. Editrix Jenni of ChronicBabe.com needs our support because a tornado hit her condo building and flooded her apartment. Donate to help get ChronicBabe back up and running (the server/site is OK, but Jenni has to piece her life back together before she can resume her role as Editrix). Visit her site and look for the Donate box in the upper right-hand corner of the page.

Financial Planning for Chronic and Acute Illness

Suze Orman's column in the July issue of O Magazine includes a really interesting question... how can you plan your financial future, save for retirement, etc. when you suffer from chronic or acute illnesses that may affect your ability to work until "normal" retirement age? What happens if you become disabled in the middle of your career?

My interpretation of some of Suze's advice:

1. Cut your major expenses so you can save, save, save. Trade in your big home and big car for smaller ones. Then stuff as much as you can into a savings account. When an unexpected crisis arises (you need expensive medical care, you take unpaid time off from work, etc.), saved-up cash will be a life-saver.

2. Make sure you have disability insurance--preferably "own occupation" insurance. This will pay if you can no longer do your normal job. Many disability policies only pay if you are unable to do any job that you are qualified for. Check to see what kind of disability insurance your job offers, then shop for better coverage if necessary. (If you are already very ill, you may have difficulty getting any kind of new disability insurance. In this case, see #1 above.)

3. Learn about spousal IRAs. These allow you to save for retirement outside of work-provided retirement plans. These come in handy if you are on medical leave.

4. Learn about Social Security Disability Income. This federal program will pay you a fixed monthly income if you become completely disabled and cannot work at all. See the Disability Planner on ssa.gov for more information.

Additional Resources for Financial Planning for Chronic/Acute Illnesses:

I cannot say enough good things about the information provided on the Lance Armstrong Foundation's web site. The entire "Practical Effects of Cancer" section of the site provides an almost endless array of advice on planning for a sound physical and fiscal/financial future when you are very ill. The advice is all pegged to cancer survival, but much of it is relevant to anyone whose life has been interrupted by serious illness. Some of my favorite pages on the site:

• Preparing for Not Working


• Planning Your Financial Future


• Housing (includes questions you can use to assess whether your current housing situation will work for you when your illness is acting up)

Welcome (Back) to the New Professional Patient Blog

The Professional Patient blog is back on Typepad. Long story, but everything old is new again. We will probably stay with Typepad this time. Thanks for reading. We should have some new posts soon.

The Heroine Picks Herself Up....

In every movie, there's a point where the heroine picks herself up, dusts herself off, and moves back into the life she was meant to lead. I am about at that point in recovering from two neck surgeries I had at Johns Hopkins Hospital 4 months ago. After being down and out and just plain MISERABLE, I can feel the old Val stirring inside.

It's going to take a while to liberate her... I'm wearing a neck brace until the doc allows me to take it off, then I have lots of physical therapy to look forward to. But I hope to resume the Professional Patient blog as soon as possible, no later than midsummer this year.

After having an extensive medical crisis, working my way through more than a half-dozen loser docs who didn't help me, undergoing significant neck surgery (ACDF/PCDF including a cage, 4-level plate, 12 screws, and some rods), and fighting with health insurance and disability insurance paperwork for months on end, I will have plenty to blog about. Sit tight. I will be back soon.