Saturday, January 28, 2012

Working when you have a chronic condition: Part I If You Have a Job

In these economic times, jobs are an issue for just about everybody. People are being laid off, hours reduced or, more is expected for less pay. Work is not only important because of the financial need to support yourself and family, but it also provides a social connection, which is important for well being. For many, it defines how they view themselves and what their purpose might be.

Add to this a new diagnosis or a long standing one, and it raises all sorts of issues. To help address the very large issue of chronic disease and employment, the next several weeks will address various aspects of this topic. This post focuses on things you can do if you have a job that you want to keep.

While most employers allow some time off with pay for sick days, such as flu, it can very from company to company when dealing with longer term health issues. There are two laws which can help workers in this situation: You can take off up to 12 weeks each year without pay under The Family and Medical Leave Act for medical or family emergencies. The Americans With Disabilities Act requires employers to make reasonable adjustments for disabled workers, often in the form of additional time off.

Consider the following:

Take care of yourself: The handout “Care of the Whole Person,”
provides the basics to help you heal and enhancing your well being. Following these guidelines can help you be in the best shape possible to perform your job.

Understand your condition and its treatment: Knowing what you might be dealing with now and in the immediate future will help you gage what it is you need as far as accommodations. Talk to your medical provider about your job. Many condition specific organizations, e.g. the American Cancer Society, have handouts and information on working. See resource section below.

Know your company’s policies and practices: Most companies have an employee handbook. Read it. Make sure you understand what the company provides and allows versus what you think you might need. Talk to the human resources department if something isn’t clear. Some companies now offer “catastrophic leave banks,” which allows employees to donate unused vacation and sick time so those who have a catastrophic need can take leave without loosing income.

Talking to your employer/co-worker: If you are having issues that impact your job and don’t tell your employer what’s going on, they can’t help you. In fact, they may jump to the wrong conclusion about frequent absences or what may appear to be odd behavior at the office, such as frequent trips to the bathroom. Prepare for your conversation. Write down some ideas about ways they might be able to adjust your schedule or make other accommodations. Practice your approach with a trusted friend and when the time comes, keep information to a minimum. They don’t need to know your life story and the more “extra” information you give, the more frustrating it becomes for them. You also do not want them feeling sorry for you.

Keep communication open between yourself, employer and colleagues. Not everyone needs to know all the particulars of your situation, but they need to know enough to be supportive when you need it. Some people have a hard time discussing their situation because they might be ashamed and/or angry about their condition. Recognize that these feelings can express themselves in ways that are not positive for a work environment.

Ultimately, you want to “normalize” the situation as much as possible. If people have questions about your condition, you want them to know it’s okay to talk to you. However, you don’t want to be defined by your diagnosis.

By being prepared for your discussion with your supervisor/human resources dept. you send a positive message that you are on top of the situation and have good problem solving skills. That’s a definite check in the “win” column.

Co-workers can be very helpful in covering times when you may not be able to be at work. Some may be in a position to donate unused leave. Offer to reciprocate.

Ask for help: If you provide realistic ways your employer can help you continue to be a valued member of their work force, changes are good they will try to implement them. Better parking, accessibility to workplace, adaptable equipment and realistic changes to work environment can be managed. When working with your employer to develop job accommodations, be specific about what needs to happen and identify realistic and time specific benchmarks for implementation.

Seek alternatives: If it’s too taxing for you to show up in an office everyday, maybe it would be possible to telecommute several days a week. Job sharing, reducing to part time or even changing positions might be a better option for you. However, more and more companies offer a telecommute option.

Cancer and Careers: Excellent website with lots of information whether you have cancer or another chronic condition

Cancer and Careers Blog

Work Life Spirit: Inspiring and thriving in the workplace and the world with chronic illness.

Working with Chronic Illness

“The Freelancer’s Survival Guide” When are you too sick to work

Working with Chronic Kidney Disease

Wednesday, January 25, 2012

Take a Break: Share Something that Inspires you

Hopefully, something in the last month has made you feel inspired. It could have been something you saw on TV, an article in the paper or something a friend happened to mention. Whatever it is, find more information about it and share this with a friend or family member. Explain what inspired you and how this impacted your thinking.

Several days ago, I was driving and listened to a story about Jose Antonio Abreu, who founded El Sistema. I was so inspired I sent the following note to by colleague and friend Kathy (she wrote the amazing piece for the post Living as if we might die tomorrow: Does it work?)

" You’ve got to watch this orchestra.

These are high school students that learn to play music through a social services program, El Sistema, started in the 1970's. Gustavo Dudamel, the conductor, was one of the kids that learned to play music through this program and went on to be the conductor of this orchestra at 18. Today he is the conductor of the LA Philharmonic.

The founder of El Sistema was given the TED prize in 2009 and his wish was to take 50 gifted musicians, who were interested in social issues and to start El Sistema programs all over the world. These programs now exist in a number of US cities. Watch him on kids transformed by music. He has so much to say it’s incredible.

In learning more about this program, it came home to me how important our art and health initiative is. But first a little about El Sistema. In 1975, Venezuelan economist and musician Jose Antonio Abreu founded Social Action for Music. He believed that if you gave children an instrument and taught them music they would be less likely to take up a gun. Today, Venezuela has over 60 children’s orchestras, almost 200 youth orchestras, 30 professional adult orchestras and dozens of choruses. Almost 300,000 kids are in the music program and 90% of them live below the poverty level. Basically, the country has been transformed by music. You can read more at

We know how art and music transforms one and can help people heal. We know the difference it’s made in the people we work with. So how do we bring the El Sistema concept to health?"

This morning, I lay in bed thinking how much better it would be to go to the doctor’s if there was a place to make something or listen to someone play music instead of the TV they have blasting away. And for all the “drop in” centers that shelters, food pantries, and condition specific organizations run, what if they were places where you could make, learn and do something? Would we heal quicker? Would we stay healthier? I think we would.

Saturday, January 21, 2012

Dating and Finding Love When Living with a Chronic Disease


No matter your age, dating and finding a relationship isn’t easy. Add to this a chronic condition and it compounds the problem even further. However, just because you have diabetes, fibromyalgia, survived cancer or have something else doesn’t mean you don’t want love in your life or that you wont find it.

Working with women with HIV/AIDS in rural America, where many were single but wanting a relationship, offered some good insights about the dating and relationship process when living with a major illness. Revealing your HIV status, particularly during the early years of the AIDS epidemic was a fearful experience, not only because of the rejection, but also the concern that they might tell others. At a time when people lost jobs and housing because of their HIV status, there were many issues to be dealt with when disclosing to a date. However, many of the women I worked with did go on to develop healthy relationships. Some are married, some have had a series of partners, friends, lovers etc. Below are some of the things I learned about dating from these women:

• The most important thing to keep in mind is that you are not your diagnosis. Yes, it is part of your life, but it’s just that “part” and not “all” of it. You have much to offer others, so your health issues are just one part of who you are.

• Don’t settle for someone because “they’ll have me.” You can end up in a very unhealthy and/or abusive relationship by believing it’s better to be with somebody then to be alone.

• There are people that look for partners with health issues so they can be in a relationship where they “can take care of you.” I could do a post just on this type of individual. The important point is that you don’t need anyone feeling sorry for you because of your diagnosis. Relationships work best if they are on equal footing. Each of us comes with our strengths and issues.

 In terms of finding the date, doing things you enjoy that involve other people, such as hiking, film series, book club, food or wine tasting etc., is a good way to meet someone who shares similar interests. Attending condition specific events, such as a boat trip fundraiser or support groups, can be another way to meet someone. That noted, many of people I know that are recently coupled, regardless of age, sexual orientation or diagnosis, have met through on-line dating. According to various different rankings,, Zoosk, e-Harmony, Elite consistently appear among the top five sites.

However, according to 12 Best Dating Sites for Disabled Singles,  there are some excellent sites for those with may specific health issues such as Special Bridge or Soulful Encounters (No border exists in the heart of the disabled).

Some people think it’s easier if they date and form a relationship with someone that has the same issues. That may or may not be true for you. You can always check the local chapter of your condition specific organization to learn about social events, dating service etc. Below are links to a variety of dating and social networking websites, many of which are free, for those living with various types of conditions:

Prescription 4 Love: A dating and friendship service geared toward people with special health conditions and diseases. Includes more than 30 chronic conditions.

Disabled Dating Club: On-line since 1997, this is a free site.

No Longer Lonely: Online social community for adults with mental illness.

Cancer Match: Cancer Survivor Dating and Social Network

Poz Match: HIV+ owned social community. It's for everyone regardless of sexual orientation, race, religion, and gender.

Whispers4u: A social disabled dating website for Differently Abled women and men to find love, friendship and happiness in a safe online dating environment. Free

• Whether you find a date on-line, through a friend or some other means, follow’s Safety Tips.

• Depending on your condition, where to go on a date can be an issue. However, following’s Safety Tips recommendations are good to keep in mind:
- meet in public
- tell a friend
- stay sober
- drive yourself to and from the date
- don’t leave personal items unattended
- don’t go to their house or yours on a first date.

• When to tell someone your diagnosis is very tricky. One woman had the biohazard sign and HIV tattooed near her pelvis. She said that if in the heat of the moment she forgot to mention her HIV status, there would be no confusion on that score.

Explain your situation on a “need to know” basis. Unless you met them in a support group, or an on-line dating service where you have either revealed your diagnosis or it’s a condition specific site, you may wait a few dates. However, if you are about to be sexual, or this looks like it has the potential to be a relationship, then let them know. The more you keep it a secret, for fear of being rejected, the more likely it is to blow up in your face.

Check out Dating Dilemmas: 8 Tips for Telling Your Partner a Health Secret

Several people I knew with AIDS referred to revealing their status as their “jerk barometer.” If he/she never called again, they were probably not someone that would have worked out anyway. Don’t let that dissuade you from accepting other dates.

More Resources on Dating
Dating & Chronic Illness: Is it possible to be in a relationship when you are chronically ill?
Dating with Fibromyalgia
Before You Start Dating (Inflammatory Bowel Disease)

Sexuality and Chronic Disease I
Sexuality and Chronic Disease II

Wednesday, January 18, 2012

Take a Break: Celebrate National Oatmeal Month

You can’t make this stuff up. January is National Oatmeal Month as well as Hot Tea Month. It’s the perfect excuse to make fabulous oatmeal cookies, sit by the fire and sip a cup of tea while munching fresh baked cookies.

Since gluten free food is a requirement at my house-my husband is allergic to wheat and one of my kids has Celica’s-I’m on good terms with gluten free oatmeal. Yes, you will need to purchase the gluten free variety for those who are most particularly sensitive. I make a chocolate chip oatmeal cookie that many have asked for the recipe, so I’m including it below. In addition, I’m including links to other oatmeal treats.

Margo’s Gluten Free Chocolate Chip Cookies
I make this in my food processor since it does such a good job of mixing the nuts and oatmeal.

Cream together: a cup of butter and scant 1 1/2 cup of raw sugar

Add: Two eggs and a t of gluten free vanilla

Add: Two cups of gluten free oats, nuts (almonds, walnuts and pecans) in the amounts you like, plus 1 t each of salt and baking powder

Add: Dark chocolate chips. If you add these to the food processor, they will be finally chopped up, providing a bit of chocolate in every bite. You can use a lot less chips that way. However, my youngest likes the whole chip so I’ll add some to the food processor and hit pulse and then stir some in after I remove the bowl from the food processor.

Drop by T onto cookie sheet lined with parchment paper. Bake about 10 minutes at 365.

Some other oatmeal recipes to try:

No Bake Energy Bites

Oatmeal Raisin Cookies from Smitten Kitchen

Baked Oatmeal

And if you don’t like the taste of oatmeal there are other things you can do with it.

Oatmeal Clay

12 Things You’ve Never Thought to Do with Oatmeal: Who knew that you can put it in your refrigerator to neutralize odors.

Saturday, January 14, 2012

Controlling Out of Pocket Medical Expenses

Recently, I spoke with a friend who asked me to write a post about medical costs. On three separate occasions my friend believed she and her husband were inappropriately charged for medical visits. Her husband had a procedure, which he did not need and in fact was contraindicated for his condition, to the tune of $1,000. She went for a gynecological exam, was asked about menopausal symptoms, for which the doctor wrote a prescription, and was billed $300 for two separate visits. Yes, the insurance company told her, two different things were done so they could bill twice for one office visit, even thought it was a 15 minute appointment. Finally, she had a simple procedure, nitric oxide to remove a actinic keratosis, which lasted no more than 5 minutes and again a high bill.

In all three instances, the doctor never explained what the charges were going to be and the visits were along the lines of “are you having hot flashes? I’d be happy to write a prescription for you.” “Looks like these keratosis need to be burned off.” Needless to say, she was shocked when the bills arrived. Her comment was “next time, before they do anything, I’m going to find out what it’s going to cost.”

With her comments in mind, below are things you can do to reduce out of pocket expenses and avoid being over charged.

• If you have health insurance, understand your policy. What does it cover? What are the deductibles? Is prior authorization required? Since this can be very confusing, there are free websites like Simplee, which links to your health insurance and creates a personal-finance-made-easy tool. This allows the user to track their deductibles and overall health insurance. I haven’t tried this tool, so if you have, please post about your experience.

• Let your provider know right up front that you have a limited amount of money for medical care and do need to know prices beforehand. Many providers don’t know the prices, but that is starting to change as more consumers are requesting this information.

• If your doctor recommends testing ask specific questions: what information will be obtained from the test; what are the costs; will the results of the test impact treatment; if you can’t afford it, can you wait until you can or can the provider help to arrange a reduced fee. The same types of questions can be asked about medical procedures and even prescriptions-is this absolutely necessary; what happens if I opt not to do it; are their free or reduced fee options.

• If you find that your provider’s answers do not justify the expense, you have the right to say “no.”

• If you do need the test, procedure etc. check pricing using on-line tools. If you need a prescription, ask for samples and check out Drug Savings Tool.

• Check your bill. Go through your bills with a fine tooth comb. Studies indicate that medical bills, particularly hospital bills, are not accurate. Read Do you Check Your Medical Bill for more information and by all means, when you find something, call and haggle for what you feel is an appropriate price. I know plenty of medical providers that do this all the time with their own bills.

• An excellent resource for learning new ways to help reduce out of pocket expenses is the Out of Pocket Blog. This website was developed to educate consumers about true health care prices. Also, check out No Job, No Insurance, No Care: What are my options?

Wednesday, January 11, 2012

Take a Break: Pamper your skin

The cold and dry weather, alternating with some snow, sleet and yuck, turns skin into a dry flaky mess. It’s easy to end up with chapped lips, and cracked heels. While I live in the land where “bag balm” is considered a staple for your nightstand, there are a variety of ways to pamper your skin and avoid having it look like rawhide come spring. If you have a regiment that works for you, take some extra time today to make sure you do it. If you are looking for a change, consider some of these ideas:

• Sugar scrubs: I discovered these one spring after planting. Made my skin feel terrific. While you can purchase these ready made, you can make your own by combing 1 cup of brown sugar with 1/2 cup of olive oil. You can add a little ground ginger, vanilla bean or an essential oil. Mix into a paste and then rub over your body, paying particular attention to your heels and elbows. Wouldn’t recommend this for the face though as it will be too abrasive. You can store the remainder in a jar. However, oils do go rancid, so use the remainder sooner than later.

• Foot soaks: If you have a foot tub great, but if not, fill a dish pan with warm water, add some Epsom salts and soak away. You can add essential oils if you like. Now that your feet are warm and soaked, use a pumice stone to get rid of the nasty dead skin. Next add a good lotion-yes, I do use bag balm when my heels are really cracked-and put on a pair of socks. Ah, now is the time to curl up on the couch with a good book, take a nap, or listen to some relaxing music or sounds.

• Eat Well: A recent study from the Institute for Experimental Dermatology at the University of Witten-Herdecke, found that people who ate five servings a day of fruits and vegetables had improved skin. Some of the fruits and vegetables that are particularly beneficial include: pomegranates, blueberries, strawberries, carrots, artichokes, bananas, broccoli, tomatoes, garlic, kiwi, avocado, and kale. Fish, particularly salmon, is also helpful.

• Drink water

• Get a massage

Friday, January 6, 2012

Medical Hoaxes: Check for the Facts

This past week, I read an article that included information supposedly written by the Dali Lama. A quick look at Snopes verified my suspension. It made me think how nice it would be if there was a one stop shop to check out the various medically related hoaxes and urban legends. However, these come in such a variety it’s not so easy to figure out what’s what. True there is a medical section of Snopes and that is a good place to check for general medically related stories that you receive by e-mail. However, this is generally not the place to learn about specific treatments for a condition.

Whether it’s an in person or on line support groups, we’ve all heard “I just read an article…” It’s important that people affected by chronic and/or life threatening illnesses recognize that they are the favorite prey of the scam artist and snake oil salesmen. If the article, e-mail or story sounds “too good to be true,” it probably is.

So the next time you hear of some amazing medical discovery, cure or treatment, before you forward it via e-mail or support group, or actually try it, consider the following:

• Know the source of the information. If there is money to be gained be cautious. If the information is from a website, who operates and sponsors the site; how current is the information. If the site doesn’t provide detailed information about who writes the site, how its funded and whose behind it, that’s a red flag. If they say they are an MD or a medical professional, run a check on them to verify they are who they say they are.

• Be aware of the tell tale signs of a hoax. According to Hoax Busters, these signs include:
- a sense of urgency (they will use terms like urgent, warning, important, virus alert or this is not a joke
- the request to share information by forwarding to everyone in your e-mail address book
- the text may contain some form of corroboration, such as “my friends works for such and such medical center and he or she says.”
- There are lots of arrows showing that the e-mail has been forwarded frequently.

• Contact the national Association, or local chapter, associated with your condition, e.g. American Cancer Society

• For complementary or Alternative Therapies (CAM), such as yoga, vitamins, supplements, acupuncture etc.) check out:
- Mayo Clinic: Complementary and Alternative medicine: Evaluate Treatment Claims. Has a good Q & A section.
- National Center for Complementary and Alternative Medicine (this is part of the National Institutes of Health)

Quackwatch: This is an interesting site to check out but use it cautiously. Quackwatch is an international network of people who are concerned about health-related frauds, myths, fads, fallacies, and misconduct. Its primary focus is on quackery-related information that is difficult or impossible to get elsewhere. Founded by Dr. Stephen Barrett in 1969 as the Lehigh Valley Committee Against Health Fraud (Allentown, Pennsylvania), it was incorporated in 1970. In 1997, it assumed its current name and began developing a worldwide network of volunteers and expert advisors. Quackwatch is closely affiliated with the National Council Against Health Fraud, where one of the board members is Dr. Stephen Barrett founder of Quackwatch.

• If you are in a support group (on-line or in-person) and someone brings up a new treatment or research study, ask questions. A lot of people in the early years of the AIDS epidemic tried all sorts of “home remedies,” from the use of photo chemicals to tons of vitamins and garlic. Some people became very ill from these “home grown” experiments. However, that is not to dismiss the “e-patient” movement, whereby actual clinical trials are being run via websites like Patients Like Me. Learn more about being an e-patient.

• Talk to your medical provider. They are in a good position to discuss how realistic the information sounds, how it might relate to your situation, and can monitor the situation if you should try something new. Since you may have more time to “surf” the web, and attend support groups, some providers rely on their patients to provide them with treatments and alternative therapies that are being explored. They will want to see copies of articles, or links that they can check out. Keep in mind that if you start going to every office visit with a stack of new articles about treatments for your condition, you’re going to frustrate your provider in fairly short order.

One of the most frustrating things about the digital age is how much e-mail is a rumor, hoax or urban legend. If everyone took the time to check out the accuracy of what they are forwarding, instead of clicking the send button, we could reduce this problem significantly.

For more information on this topic, go to Scams, Fraud and Quacks.

Wednesday, January 4, 2012

Take a Break: Visit a Library (in person or on-line)

The holiday season can be a break for some and a high stress mess for others so today’s take a break is all about the leisurely pace of the library (that’s of course if you aren’t the librarian that’s going at warp speed to respond to a variety of patrons needs). If you don’t know your local library, today is a good opportunity to check it out, read a magazine in one of their comfy chairs, take out a book, tape or CD and maybe even chat with the librarian about a recommendation for a “good read.” If you don’t know where your local library is, and you live in the United States, check Public Libraries. If you are fortunate to have a Nook, Kindle or one of the many iPod or Pad products, you can “borrow” books to read or listen to. This is usually a free service, but you’ll need to check with your librarian about how to register for this service.

If you are a regular patron you might not think this is much of a break, so another option is check out the Library of Congress on-line You may want to set a timer for yourself as the collection is so vast, you can spend many hours reading, listening to old recordings or watching videos.

Happy New Year!