Are you finding that looking for a job when you live with a chronic illness is daunting, overwhelming, depressing . . .

• “… Enter work gradually and with honesty to your employer about your health needs” .   YES!  If you don’t give yourself time to ramp up because you worry about what “they’ll” think of you,  you’re setting yourself up for failure.  Monitor and watch how work impacts you isn’t necessarily a bad thing.   I think high energy is an over-rated qualities.  Also, if you don’t tell your employer what you need, it’s unlikely you’ll do the job well.  Why set yourself up for failure?

• “… Find something that you feel passionate about so it’s a balance to your health…”   Hmm, passionate.  Let’s face it, few of us get to work at something we feel passionately about. But you can and have to find something that you care about in your job/career, whether it’s what you do, who you’re doing it for or just the folks you see every day.  Otherwise it’s just a job.  And when you’re struggling with chronic illness symptoms, that’s not enough to counterbalance the  struggles.

Rosalind Joffe  aka cicoach.com

Don’t Miss This!    MONDAY, November 3

THE FIRST DAY OF OUR VIRTUAL BOOK TOUR!

Check out the bloggers and their dates!

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In one of the chapters I wrote for our book, Building Your Support Team, I told a story of the time I “fired” a gastroenterologist because he took a directive approach with me regarding a medicine he prescribed that I had strong concerns about. I also wrote about how my next gastro doctor prescribed the same medical regimen as the first, but because he addressed my concerns and explained the current thinking, I was comfortable enough to follow the advice.

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DISCLAIMER: When you read the specifics of what I’m about to tell you, know that I’m not making recommendations about your treatment. I hope and trust that you and your medical team have the most up-to-date information to make the best possible decisions for your situation.

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I’ve mentioned in past posts that my symptoms have been in remission for some time (3 years now). As a result, my doctor has gradually reduced the dosage for Imuran (an immune system suppressant most often used for kidney transplant patients that has been helpful in dealing with rheumatoid arthritis and Crohn’s Disease symptoms), and my Remicade treatments from once every 2 months to once every 3 months. Hooray!

Last week my doctor suggested that I discontinue taking Imuran. Why? There are several factors that went into his recommendation.

1. in the last year there’s been an increase in the incidence of lymphoma, suggesting that long-term use of Imuran carries some additional risk factors not previously known. What are the exact numbers? Not huge in the bigger picture, but enough to cause concern. Up from 4% to 6% in one year.

2. One of his patients just developed lymphoma at age 25, and he’s concerned. It’s a little more personal to him.

3. I was taking a low dose of Imuran and I’m symptom free. This gave him some freedom to make this recommendation. If I’d been taking a larger dosage, and/or was struggling with symptoms, he would have hesitated to suggest we try eliminating the drug altogether. So, it’s a weighted recommendation as all such decisions should be.

4. There’s new evidence that when Remicade works (it doesn’t for everyone) it may be sufficient on its own once symptoms go into remission. The gastroenterology doctors are still sorting this one out.

In many cases, improved quality of life and the clinical benefit immunosuppressive therapy provides still outweigh potential risks. 4 years ago, when my doctor was concerned about a possible need to remove of a portion of my colon, a hard-core medical response would have outweighed these risks. I’m sure that if my symptoms come back, we’ll revisit this decision.

I did a little Internet research and found some variance in the findings. I suspect, as one article suggested, that like everything else having to do with the body, there a variety of contributing factors to the increased incidence of lymphoma.

Rosalind and I believe that it’s important that the people on your team – medical and otherwise – communicate and disseminate information with respect. Perhaps you can see why I like this guy. He’s fully aware that when it comes to autoimmune diseases, the regimens for care are still experimental. He always keeps me up-to-date and continues to take a consultative approach. Even if he thought I should continue with Imuran, he would have let me know what he’d learned. I could ask for nothing more.

Joan

P.S. I don’t always like reading about the techy medical stuff, especially if it scares me. Risk factors are just that. They’re never absolute.

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Oh, my.  I must sound like a real grinch complaining about getting this attention.  Check out Revolution Health’s Women’s Health Expo featuring more sites devoted specifically to women on  specific diseases and issues specific to women.

I notice that they don’t have anything about staying healthy while keeping a career while living with chronic illness.  Hmmm.  Do you think that’s one too many things to think about?
Rosalind

P.S. A reader emailed  to tell me our book, Women, Work and Autoimmune Disease:  Keep Working Girlfriend, has the wrong page numbers in the Table of Contents. The publisher is very apologetic (it happened between the galley and the final version) and it will be corrected. I hope this won’t stop you (or lead you to think less of us) -  you can still easily find the chapters should you need to.

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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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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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• 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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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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A friend with carpal tunnel syndrome told me about Dragon NaturallySpeaking 9.0, a software program that allows you to speak into a headset with your email program open. It does the transcription and purports to transcribe your words up to 99% accuracy. After a couple of weeks of research I decided to purchase it as another Get Clients Now! program was about to start.

It’s been a week now, and it’s working! I won’t tell you that it’s all that much faster than when I type. As an introvert, typing keeps pace with my thinking. But, when I’m flowing, it goes quickly, too. I sometimes stutter (I found out) when I’m composing my thoughts, so I have to take time to correct it’s attempts to come up with real words when this happens. (Once, I even yelled “shut up!” at my dog, forgetting my headset was on.) However, the more I work with it, the more it “learns” to recognize how I speak and the words I use.

It’s more relaxing than typing, too. I found I could review a report a client sent me and dictate my feedback without twisting around, back and forth, in my chair.
Costs? From www.amazon.com, $139 (I got the Preferred edition so I could use it with Office programs and on the Internet.) Additional memory for my computer: $60 and a more comfortable headset: $50. Impact on my welfare and ability to do my work: priceless.

In one of the chapters in our book, we talk about some of the things that make it easier for women with auto immune diseases to start a business and work from home. Dragon NaturallySpeaking would definitely be one of them, especially if your illness makes it hard to use your hands and a keyboard. I imagine it would be a viable resource when working for a company as well, though I wonder how it would work in a cubicle situation.

Joan

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First of all, (not discussed on these shows) autoimmune diseases impact women much more than men; the ratios range from 2:1 to 10:1. This seems to have to do with the fact that we can have children, meaning our bodies have had to find ways to protect themselves from this foreign body (a baby is half foreign, you know) while keeping it alive at the same time.

Ok, enough biology for the day.

Consider this: because we can have children, we seem to react differently to our illnesses than men. The choices are harder.

Example 1: On January 8th the women of The View talked about famous artists in previous centuries who lived very long lives in ill health, and never stopped painting. They were impressed that they working all the way to the end of their lives, even in the face of ongoing illness. The women further noted that all artists of earlier times were men. So, they pondered, why? Why could men produce such works of art and not women? They decided: men only had one focus, working. Women have always had “distractions.”

Example 2: That night I came across a documentary on the Documentary channel, The Breast Cancer Diaries, about reporter Ann Murry Paige who, at the age of 38, was diagnosed with cancer. (While cancer is not an autoimmune illness, the quality of living with it has similar characteristics.) Ann had already stopped working full time after her first child was born. Her second child was only about a year old when she was diagnosed. She video-taped her entire 6-month journey from diagnosis through treatment and her one hour back at work.

I was struck by something Ann said about that hour she was back on the air. As you would expect, she was very nervous to return to work. Afterwards she noted that she didn’t think about her body or cancer one time during that hour. Ann decided to stay home with her children after all, which was in line with a choice made before she became ill.

Nonetheless, Ann couldn’t have done a better job illustrating one of the primary reasons Rosalind and I wrote Keep Working, Girlfriend! The ability to work gives us sense of strength and something to focus on outside of our most personal concerns, even if for only an hour at a time. Though Ann decided to stay home rather than return to news broadcasting, she was clear about the sense of accomplishment she felt during that hour.

Example 3: On January 9th, also on The View (hey, I record it every day), Montel Williams talked about his experience when he was diagnosed with Multiple Sclerosis (MS) in the early 1990’s. His doctor told him that he should prepare to retire then and there. He was appalled at the suggestion and decided no way! He did a lot of research, took medicines prescribed when it made sense to him, and sought help with his symptoms through nutrition. He reports feeling better than ever, and is still working.

Trust me, I wasn’t looking for it, just listening. It seems that, generally speaking, men will go back to work just as soon as they can; women may not. I’ve always been for choice in this matter and do not believe one decision is right or wrong. It does appear that women need a bit more support for this choice, and certainly face different challenges because of our biology.

Joan

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Until I worked on this chapter I pretty much lived in the world of my own illness, Crohn’s Disease. In order to write the chapter I read a couple of books on the subject, including Women and Autoimmune Disease by Robert G. Lahita, MD. Reading these books opened my eyes to some mind-staggering numbers. First of all, there are at least 63 Autoimmune Diseases (AD’s) and an estimated 14-22 million people are living with some form of AD – more than twice the number of people with some form of cancer. The information in Lahita’s book is based on numbers from a 1997 census, so the numbers may be greater now.

Furthermore, many more than half the people with an AD are women. Autoimmune diseases happen to hit women most often during their child bearing years, meaning during the prime of their working lives.

If 5-8% of the population are impacted by AD’s (again 1997 numbers), and more than half are women, we thought we should explain what’s happening to some of us.

Joan

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