Mother’s Day and the Baby Arrived Just in Time

Rosalind — Thu, 08 May 2008 16:23:46 +0000

My complimentary copies of our book, Women, Work and Autoimmune Disease: Keep Working Girlfriend! came today. (Unfortunately, Joan’s didn’t and she needs some for a speech she’s making next week so we’re scrambling.) It’s almost (but not quite) as exciting as coming home from the hospital with a newborn!

The publisher gives us some free copies to give to family and friends (and those of you who read early drafts!). And, I’m told that it should be ready to order at Amazon.com any day now (click here to get to my web page that takes you to Amazon) You can pre-order though. FYI: pre-orders on Amazon get 5% more off their already ridiculously low price.

So feel free to blog about our book, review it, send it around to anyone whom you think might gain from it. I’d really like to hear what you think about it.

And, now onto passing along information. Are you familiar with online body scans? I’ve been working with several for a while with various coaching clients (and myself!) and I find they’re really useful. They’re part meditation/relaxation but the body scan aspect is invaluable for us CIer’s — a super way to get in touch with what your body is experiencing.

Here are two that I’ve come across: The Cullen Body Scan - which is free. Mindfulness Meditation: Guided Body Scan -this costs $10 and is worth it in my mind.

One client was doing this at work (he has his own office) in the middle of the day — until he realized it relaxes him so much, he falls asleep. Now he does it before going to work to check in and see how he’s feeling in his body (he has a habit of ignoring symptoms until they really stop him cold).

What do you do to get “in touch” with symptoms?

Rosalind aka cicoach.com

P.S. You CAN always put your comments online so others can gain from your thoughts, too! I just can’t figure out why people don’t comment -but email us instead. You CAN post a comment anonymously even. Any ideas?

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When You Talk About Chronic Illness

Rosalind — Wed, 07 May 2008 01:17:56 +0000

According to Jay Cutler’s business manager, the Denver Bronco’s Quarterback is, “managing his disease {type 1 Diabetes diagnosed two weeks ago} and in no way is his football career jeopardized.”

Wow. He accomplished a lot with these few words.

1. We’re told unequivocally that the 25 year old athlete, who until two weeks ago knew nothing about living with a chronic disease, Diabetes Type 1, that needs constant monitoring, is managing his disease.

2. Mr. Cutler’s agent says that this will not affect the young athlete’s career, as if it’s fact.

Now, I haven’t a clue how true either statement is. But I am impressed by the clarity of the message. When I speak and write about how to talk about your chronic illness, I emphasize the need to make to make two things known:

(1) You’ve got things under control

(2) That this will not be prevent you from getting the work done.

Obviously, Cutler’s agent has read my “playbook”!

FYI - For more specifics on talking about this, see Chapter 6, Women, Work and Autoimmune Disease: Keep Working GIrlfriend! – as soon as it’s delivered to Amazon.com or your neighborhood bookseller! - or go to my Career Thrive Guidebook, Are You Talking?

The good news for us, girlfriends (and guys), is that famous people aren’t trying to hide their diseases anymore. (Let’s face it, they can’t thanks to UTube and the internet.) And this disclosure is good because it helps “healthy people” understand that autoimmune diseases — and all chronic illnesses - - can’t be ignored, swept under the rug in the hope that they’ll slip away unnoticed.

I sincerely wish Jay Cutler only the best and I hope that he does learn how to manage his disease so he can continue to be successful. What do you think it would do for the image of people living with Type 1 Diabetes if the Broncos win a Superbowl with him?

Rosalind

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Do We Want to Keep Up with Healthy People Anyway?

juzjoan — Thu, 01 May 2008 20:50:52 +0000

This morning I was re-reading one of Rosalind’s chapters in Women, Work and Autoimmune Disease, “Challenges in the Workplace.” She shared numerous stories and examples to illustrate the complete unpredictability - and impact - of living life and working when you have an autoimmune disease (AD). Reading between the stories, I’d say Rosalind inadvertently illustrated the tremendous demands for a high level of productivity we all deal with at work.

I was reminded of one of the defining moments in my last job. I’d just returned to work after 2-plus months on disability leave. I was happy to be back and my co-workers were happy to have me back - thank goodness.

I looked forward to lunch with the usual group. We headed out, took the elevator and walked out the front of the building. And, I noticed something. They were headed to lunch at a pace synonymous with a mad rush from a burning building. I, on the other hand, was walking like I was taking a comfortable stroll on the beach. While away from work I’d slowed down, initially because it hurt to move too quickly and I didn’t have the strength. Then, it became a habit. I’d gotten off the treadmill.

Have you noticed that to help preserve your energy and keep your symptoms at bay, that you have to stay more centered in your body? That day I made a promise to myself. I decided I’d not return to that unbalanced, head forward, racing posture again. And, I haven’t. Sure, I can walk more quickly when I need or want to, but it’s never at the fire drill pace.

What about you? Am I crazy to think that we, with AD’s, have an opportunity to invite the rest of the working world to get real, to slow down a bit? What if “normal” is off kilter and we’re here to say, “Hey, this model for working is not working!” I know, you didn’t ask for this assignment.

Joan

P.S. If you want to read more about the effects of fast-paced busyness on the body, check out an article I wrote a few years ago, Busyness Is Not a Long-Term Health Plan. Scroll down the page to learn about the role of adrenalin in all this. Here’s to your health.

P.P.S WE’RE SO EXCITED. Our book is in the publisher’s hands, which means we should be getting it soon, which means is should be at www.amazon.com in a couple of weeks. MORE NEWS: we got a fabulous review by the Library Journal. Scroll down a bit to find the review of our book.

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Affordable Healthcare for People with Chronic Illnesses?

juzjoan — Mon, 28 Apr 2008 22:41:35 +0000

The topic of health care and medical coverage came up this last Saturday when meeting with my colleagues in a coaches’ mastermind group. All of us are self-employed. Half of us has had some significant health issue to deal with this year. Try to picture this motley group.

One was walking slowly with the use of a cane, required for post knee surgery (she also just underwent breast reconstruction surgery, her last treatment post breast cancer)
Another had her arm in a sling after her third major surgery on her shoulder
Another was doing ok, now several weeks post hernia surgery
And there I was, with my drippy eye, administering drops every 2 hours to fight some unnamed infection
3 well individuals were in attendance…

I share the following information with you in case it would benefit even one member of our community.

One of my comrades mentioned that she’d been paying $1100/month for her coverage with Blue Cross. That’s a huge chunk of change, even for someone doing well in her business.

She told us she’d just signed up with a health care network called Beech Street (a Viant Network) for $199/month. She responded to a one-day offer to receive a discount on her coverage. So she investigated, decided it was worth trying (to potentially save $9600/year) for the administrative fee of $125 to get started. She has not yet canceled her Blue Cross coverage, and is using the initial 10-day period to read the fine print, but she’s hopeful. Here are some of the specifics she shared with me:

PPO coverage
$25 doctor visits
80% doctors outside network
100% of hospital expenses up to $65,000
Nationwide PPO A rated

I asked her about pre-existing conditions. She said it’s not an issue. They only asked for medical history for the past 6 months, about which she was honest, and about her medications.

I asked about the monthly rate without the special offer price. She thought just $230/month.

NOTE: this post does not constitute endorsement of this service or product, nor a promise of the same outcome. As always, investigate any opportunity fully, using your own research and judgment.

To your health,
Joan

P.S. I’ll check in with my comrade in a couple of weeks to find out about her final decision.

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Running marathons and running for President but we’re running on empty

Rosalind — Thu, 24 Apr 2008 15:39:08 +0000

It was another hot marathon day here in Boston this past week. I don’t know about you, but I don’t run anywhere anymore - numb feet /bad balance makes skipping a challenge.

And there was another race in the marathon for President. Wouldn’t it be something if one declared, “I can’t do it anymore. I’m just too tired!” Oh and place your bets here for who will be the first to talk about chronic illness as an issue in this campaign …

In my last post, I mentioned the article about our book (and my business, cicoach.com) in the New York Times Online Business section this week. Hooray for press and attention to these issues. I got lots of email from people who saw the article — and it indicates that we (the chronic illnesser’s) are barely limping along — not even keeping a steady pace?

Here are two :

Hi Rosalind, Since I’m recovering right now from a migraine (and had to miss a meeting at an agency that I’m trying to land a job!), I’m not able to write/expound on other illnesses that affect workplace functioning.
But I will when I’m up to it. I’ve suffered both the migraines, as well as severe depressions and anxiety. I have accomodations at work (e.g. flex time, part-time work) and have also consulted (grants writing). My husband and I have not been able to take the kinds of vacations we’d like that would in fact be therapeutic (e.g. Florida in winter) due to income–I keep saying if I can get a full-time job we’d be able to do this… Anyway, I look forward to adding my thoughts to the blog on this topic.

AND HERE’S ANOTHER ONE:

Hi Rosalind, Wow! A friend sent me the link to the New York Times article about your book, and suddenly I don’t feel like I’m the only person in the world trying to work and managing a chronic illness at the same time. I simply felt compelled to write to you.

I am 35, and at 17 I was diagnosed with myasthenia gravis, a relative of muscular dystrophy. The good news is, it is controlled by medication, primarily by prednisone and cyclosporine (no, I didn’t have a transplant, pharmacy assistant, but I’m glad you know enough about the drug to ask). The other good news is, I don’t LOOK sick, so it’s easy to hide from my employers until a flare-up “outs” me. The other good news is, flare-ups have outed me only a couple of times in my career–one of those was a couple of weeks ago, when my neurologist ordered me to bed for a week.

I keep it controlled pretty well as long as I don’t tire myself unnecessarily and don’t get a secondary infection…which is what happened a couple of weeks ago.

Here’s my problem: I’m single.

You guessed it. I can’t get health insurance without a job or a husband. Well, I’ve had a husband. He thought I was a hypochondriac (as mentioned, I don’t LOOK sick) and/or lazy. Most of the time I am able to work a full week and still have a life, as long as I take my meds and occasionally have a sleeping marathon. But I feel So. Much. Better when my employer allows me to work from home a day or two a week. Simply removing the time and effort required for the commute makes all the difference in the world. Unfortunately, I work for a small company, and they’re not particularly flexible in their rules or especially forward-thinking.

I love what I do. I am a professional resume writer. I can do that from any location in the world; all I need is a computer, a telephone, and an Internet connection. If I could, I would live the life of one of our company contractors. Work at home, adjust my workload according to how I feel and how much money I need, and go from there.

The problem with that: health insurance.

Are there any solutions to this problem? I fall into the category of doom, pre-existing conditions. Because of my unscheduled week off within the past month, I think I’ve also been identified as a liability in terms of the amount I cost the company for health insurance. I use it a lot, so I make the group costs go up. I also know that I am the most tenured and the best writer in the department, so if I get fired, that’s why, and you better believe lawyers will be involved. But I’d much prefer to keep my job, my health, and my life. I won’t even go into the amount I have to pay out-of-pocket for health care and insurance every month…let’s just say it’s fortunate I don’t have a car payment. I’m just lucky I HAVE health insurance.

Is there anything I can do so I could even think about working for myself? I would love to take some time and write a book, while sustaining myself by doing resumes on a contract basis, but while I work full-time, I don’t have the energy to even think about writing a book. I have to work full-time. Maybe someday I’ll get married again, but I’m not marrying for health insurance!

Anyway, Rosalind, you’ve probably heard all this before. I know I am much more fortunate than many, but sometimes I get a bit down-trodden when I look at my other single girlfriends who can take their health insurance for granted, or for the married ones who have more options, whether they are healthy or not.

There’s something wrong with this picture, folks. Is it difficult for you to get health insurance so you stay a job you don’t want or even stay married? Are you not taking vacations because CI has made your salary so low you can’t afford it? What are you doing about this?

Rosalind

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The Last Lecture is not to be missed

Rosalind — Mon, 21 Apr 2008 18:34:28 +0000

Have you heard about The Last Lecture? I had but because it sounded like another one of those “media” hypes — you know the ones where some guy gets his “Andy Warhol 10 seconds (or was it minutes …) of fame” — I ignored it.

But when a client sent me the links to Pausch’s videos and said I had to listen (thanks, Lynn), I wondered if maybe I was missing something. And I was.

I found myself laughing out loud (which is a little embarrassing when you’re alone in front of a computer) by his Lecture. Then I was in tears (HONESTLY!) by his sincerity and remarkable attitude. Listen to Randy Pausch’s thoughts on dying, advocacy and what dreams do for you.

http://youtube.com/watch?v=ji5_MqicxSo

The last lecture .. truly worth taking the time to watch.

http://download.srv.cs.cmu.edu/~pausch/

his home page at carnegie mellon

http://download.srv.cs.cmu.edu/~pausch/news/index.html

his update page (essentially an ongoing diary of how things are going)

Randy makes so many simple and yet profound points. Here are my top 3

Pancreatic cancer isn’t getting attention because people die before they can advocate.
This is not a disease that you could have avoided if you’d taken better care of yourself.
Research is underfunded and what’s there, focuses on treatment rather than cure.

Hmmm, sounds a lot like so many chronic illnesses, doesn’t it?

Along the lines of 10 seconds of fame, check out this article http://shiftingcareers.blogs.nytimes.com/

Rosalind aka cicoach.com

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What do you want to hear when you’re drowning?

Rosalind — Thu, 17 Apr 2008 15:06:18 +0000

We got mail - an email, in fact. I’m not including everything the writer said and, of course, I’ve kept it anonymous. I share this because I have a hunch that her voice isn’t alone and I think that voice should be heard.

And in the spirit of creating conversation and getting your thoughts. Please – comment on the web and let us know.

Ladies: What do you suggest when chronic illnesses and caregiving have impoverished you and you can’t afford vacations; when respite care’s out of fiscal reach; when flare ups have put you out sick so often that if you even have time off left, asking for more is inviting job loss because your boss’s patience is thin and you’re behind anyway and wiped out playing catchup?

Does this resonate with you?

The writer seems to be frustrated by Joan’s post about taking a vacation as well as my own (in my WorkingWithChronicIllness Blog). Knowing that the best writing has a specific reader in mind, we created our target reader when we wrote our book — and when we blog here. She’s not “everywoman”. She is someone with a lot on her plate at all times and chronic illness makes it often feel like life is just too damn hard (sorry if my language offends but I can’t think of another word that does this justice).

So, I ask you as a writer — and as a coach. What would you want someone to say to you when you tell her that you’re feeling like you’re drowning - and there’s no oar in sight?

Rosalind aka cicoach.com

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Vacations are Tricky: Taking Your Illness With You

juzjoan — Tue, 15 Apr 2008 00:53:21 +0000

I’ve been spending this past few weeks writing about and thinking about the value of vacations to self-employed professionals, and reading pathetic statistics about how so many people - employees and business owners - are failing to take them with much regularity. I’m even running a free tele-seminar program about taking vacations, as it’s a business topic that doesn’t get much attention. Bottom line: most of us are vacation deprived. The average US citizen is working one more month a year than in 1976!

What about people with autoimmune diseases, or any illness for that matter? If you’re at home on disability, does that count as your vacation? Can you still take them and should you? If you the answer is yes, how can you take a vacation if you’re feeling like crap and have little or no energy to do much of anything?

I can still remember the time when my husband and I traveled to Laguna Beach, CA for 3 days (back then I lived about an hour away), only to spend more time in the not-so-great less expensive hotel than enjoying this lovely beach town. I can also remember the road trip I took with my son the first year I was ill, traversing Central California’s Highway 5 to spend time with a friend. The trip home included a bathroom stop every hour - not relaxing!

Last week I was able to enjoy a short trip to San Francisco, and I know that it’s a blessing. Though I’ve been dealing with some weirdo inflamed lower eyelid thingy for a few weeks (that raises the pettiness of my vanity to new heights), it’s nothing like the pain and debilitating symptoms associated with my Chrohn’s flare-up that have cut more than one vacation short.

I’d like to believe that disability leave doesn’t fully qualify as a vacation, and that vacations are good for women with chronic illnesses as long as they don’t cause undue stress.

I propose the following prescription for body-friendly vacations:

1. If you have to fly, and flying either aggravates your symptoms or requires you get your needs met, tell the flight crew (this is the old “ask for help” requirement to make life easier).

2. Figure out what will help you relax. My husband likes to move. Even when I’m well, I’m not as likely to seek out frequent road trips from my hotel to be happy. When in Hawaii one year, he took some trips alone while I stayed near the pool.

3. Communicate with your traveling companions. Let them know your limitations and concerns so they can support you. I once took a trip to Mexico with my best friend and we shared a room. Even though she is my best friend, I wasn’t delighted to tell her about my bathroom needs. I did though, so I wouldn’t have to hide.

4. Check out tours so that you can see the sites without taxing your body.

5. Go do some place warm, a place where the natural beauty and the weather sooths your spirit without doing much at all.

6. Be flexible. Plan things you’d like to do, and be ok if you can’t get to everything. Go with people who will be ok about changing plans too.

What impact has your own illness had on your vacation choices? Are you taking them as much as you might like? What’s the most awkward situation you’ve gotten into? Have vacations helped you feel better?

Joan

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