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Archive for November, 2008

Image courtesy of www.lifehack.org
The First Thanksgiving

Today is the day when some of us traditionally get together with family and friends to eat, watch football, enjoy one another and eat some more.  Others will have spent the day serving in a soup kitchen. Regardless of your setting, today is a day of gratitude and thanks.

What am I thankful for? This past year has been a particularly challenging. And, yet, I am eternally thankful for all it has given me. Fibromyalgia and chronic fatigue raised their ugly heads this spring, but I am thankful, not for the disease, but for the fruits:
  1. I am learning what is important: family, God, and long-time friends
  2. I am more prayerful.
  3. I am more willing to ask for help.
  4. I am more willing to let things go: an unkind word, a slight, or wanting to be in all activities all seem so unimportant.
  5. I am learning to pace myself (Ok, not really, but I did go shopping for the first time in months. Still did too much, but not as much as I could have.)

I am also thankful for

  1. an understanding neurologist who seems to know her stuff,
  2. my former neurologist who truly wants the best for his patients,
  3. medications that ease my pain, and
  4. especially for the members of the Migraine community who are with each other for the long haul, advocating for Migraine education, research, and support of all Migraineurs and their families.

So to you, my readers, I wish you an AWAP (as well as possible) Thanksgiving Day.

Fondly,

Debbie

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Picture courtesy of Rosalind Joffe

Picture courtesy of Rosalind Joffe

Rosalind Joffe has written a great book for working women who have autoimmune diseases. She has been promoting her book through this virtual book tour. There are tips on disclosing the illness, how to succeed in the workplace when only your skill set is no longer enough, and what to do if you get fired by your boss, or your body, or both.

We are giving away a copy of the book to the person who can best answer this question.

What is your biggest challenge at work and how will reading this book help solve it?

I recently interviewed Rosalind with some questions of my own. I will let her take it from here.

Looking down the rabbit hole:

 

1. Why do you encourage women with a CI to work? Is there an additional benefit of working as compared to healthy women who do not work?  (I am referring to loss of resources and finding a balance.) Actually, we (my co-author, Joan and I) wrote the book as a support for those who want to work but find too many impediments in the way. As a chronic illness career coach, I know there are too many variables in a decision like this to say that there is only one right way for everyone.

 

That said, chapter 2, Why you should keep working, makes the case that continuing  to work helps you maintain your physical, social, mental and financial health. I site specific studies that support this notion.  But no doubt about it —working can be difficult. It’s not easy to find an organization where unpredictable health doesn’t lead to being marginalized, to find co-workers who support you and don’t resent you, and to earn a salary/benefits that meets your needs. But I urge you to consider the long term, rather than focusing on the immediate demands of young children or the difficulties of a severe time in an illness that could improve. 

Finally, I think (but haven’t seen any research to support this) that it is even more valuable for women with CI to keep working. I describe this in detail in Chapter 2 but here are some highlights: 

  • There is a higher rate of divorce among couples with CI and if you’re single again, it’s likely you’re going to have to support yourself (or live on the poverty level income of SSDI).
  • Many of us with CI find that increasing limitations means a loss of self-esteem. As long as you’re doing work that you CAN do, work is one place where you can continue to feel valued.
  • Work offers a distraction from your body and that’s a huge piece of being able to live with CI.
  • When you have a debilitating CI that requires disclosure, it’s more difficult to re-enter the workforce after a hiatus.  It’s always easier to find a job when you’re currently employed.

  2. How does one keep emotion out of disclosure? Especially when newly diagnosed emotions are everywhere and there is no clear answer to the question, “How will this affect your ability to work?” (I broke all of your rules on disclosure).

So, if you “broke the rules”, how did it go for you? 

 

Obviously, there are many variables. The chapter, Talking about your Chronic Illness explores this issue in depth.  With a new diagnosis, if you’ve had to take a leave or there is a physical difference people can see, you’re “out of the closet”. Since none of us are prepared for living with illness, I suggest you seek help from someone you trust to develop the skills you need to discuss this on an on-going basis. 

 

Generally, I think it’s better to disclose a new diagnosis once you have a better idea of how this will go for you.  When you’ve lived through several “flares”, you’re better prepared to respond to the question:  “How does this affect your work?”  If you have to discuss it, however, be as honest as you need to be and as private as you want to be.  Remember, no one wants a sob story.  They want to know you can do your job.

 

As far as keeping emotion out of any discussion of CI at work, that’s about being “professional”.  All organizations have a culture with unspoken standards for acceptable behavior.  In some settings, emotional is fine.  But if you’re gushing with fear and sadness, then others pick up on this and view whatever you do or can accomplish through that lens.  That’s true whether you’re healthy or not.  Filtering your behavior is a key factor in workplace success.  Make sure you get help – either from a trusted colleague, a mentor or a coach. 

 

3. As a coach, how would you counsel a client who wants to start a home-based business because the demands of a full-time job is too stressful?  Joan wrote about this in the chapter, You’re Fired – by your body or your boss.  Setting up your own business means that you need at least three things: 

 

  1. Something that you can do that people will pay you to do
  2. Financial backing to support you while you’re getting the business of the ground
  3. Motivation, discipline, the ability to work alone and belief in yourself

 If you have all of those things, then a home based business could be a terrific solution to those of us living with unpredictable, debilitating disease.  Both Joan and I did it successfully but we’re aware of what it takes and we encourage others only when they are clear that they can meet the basic criteria I stated above.  Most people don’t make the kind of money they think they’ll make but do find that’s offset by the flexibility and freedom they get with self employment. 

 

Rosalind, thank you for your insight and willingness to answer our burning questions concerning work and chronic illness. Many of us have been encouraged and enlightened.

 

 

Rosalind Joffe, co-author of Women, Work and Autoimmune Disease: Keep Working, Girlfriend!, is president of cicoach.com, a resource for professionals who live with chronic illness. Check out her website (http://www.cicoach.com), which is filled with resources about career challenges living with CI and her blog, Working with Chronic Illness (http://WorkingWithChronicIllness.com)

 

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Anti-convulsants are used to control seizures in patients with epilepsy and Migraine attacks in migraineurs. I have always wondered why my friends who have seizure disorders could tolerate these drugs better than I can. Am I more sensitive to drug side effects? Or did I have different side effects?

It appears that Are Migraineurs at Increased Risk of Adverse Drug Responses?may have the answer.

Authors Luykx, Mason, Ferrari, and Carpay investigated all of the studies that compared Migraineurs and patients with epilepsy taking only topiramate (Topamax) for treatment. They found that each group experienced different side effects from topiramate. Behavioral side effects and headache were experienced only in patients with epilepsy. Altered taste (yuck!) and cognitive difficulties were experienced only by patients with Migraine. I find this fascinating! Same drug, different diseases, different side effects.

Not only this, but in clinical trials Migraineurs were “more likely to drop out because of ADRs [adverse drug responses].” So, not only were the side effects different for the two groups, Migraineurs appear to be less tolerant to their set of side effects. The article will soon be published in Clinical Pharmacology and Therapeutics.

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I just did a Google search for migraine +cure and in a split second I got 268,000 hits. It boggles my mind to think there are that many people hawking a cure for what is known to be a manageable, neurological, genetic disease with NO known cure. Now only that, but the articles contain outdated information, unsubstantiated claims, and downright lies.
Take this one, for example. Thomas Coffman’s article was published on November 5th in Albert Lea Tribune.com. The title, You Might Discover Your Own Migraine Cure, is a bit refreshing only because he isn’t trying to sell me something. However, he should brush up on his statistics and the latest Migraine research.
Let’s take him on step, by painful step:
  1. “an episodic, paroxysmal, headache with debilitating pain” Migraines are NOT headaches. Headache does not define Migraine. Migraines are not always episodic. Migraines are not always sudden; mine creep up on me. Yes, the pain can be and usually is debilitating. OK he got one out of four.
  2. “They may be the result of tension, or stretching of the membranes around the brain and of the blood vessels and muscles of the scalp” Migraines are not vascular in origin as once thought. This idea is at least 10 years behind current research.
  3. “23 million Americans… suffer from m [M]igraines…” old stats. Magnum cites 32 million Americans with Migraine. The American Headache Foundation cites 29.5 million.
  4. “there are some common trigger factors associated with behavior, which gives us a psychosomatic origin. ” I almost lost my dinner after reading this. Patent lie. This needs no comment.
  5. “Of all the things that affect the migraine patient, I try to identify what the patient may be doing to them selves first.” OK. Blame the patient.

The article goes from bad to worse. I think I have made my point. Thomas, get your facts straight.

photo courtesy of Apolline Fishing Tackle Co.,Ltd.

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The November Headache Blog Carnival has been posted at Pain In the Head. The topic this month is Art Inspired by Living with Migraine Disease.
Diana Lee, Kelly, James, Jenny and I all have posts on this topic. Some are actual art created to depict a migraine and others are about the role art can play in easing one.
Come on in! You are most welcome!

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Bright Light invades brain piercing right eye

hammering pain; I’d rather die

Dark Room don’t move

Hours pass

I see pretty flowers under glass

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I’m participating in a Virtual Book Tour with other popular bloggers to bring attention to this important new book: Women, Work and Autoimmune Disease: Keep Working, Girlfriend! Along with the other bloggers, I will be interviewing the author and bringing attention to this important issue. Join us Nov. 3 – Nov. 24. I will be interviewing Rosalind.

My post will include a give-away. I will be giving a copy of her book to the person who can best answer the question: What is your biggest challenge at work and how would reading this book assist in solving that problem? Rosalind and I will select the winner. The deadline is December 4th (wow, where did the time go?).

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