Famous Fibromites

Some famous people in history who might have had fibromylagia!

http://www.fibromyalgia-information-relief.com/fibromyalgia-people.html

Good Fibro Overview Article

This is a pretty good overview article, probably a good link to share with friends and family to help them understand it more a bit:

http://www.lifescript.com/Health/Centers/Fibromyalgia/Articles/10_Questions_About_Fibromyalgia_Answered.aspx?utm_source=outbrain&utm_medium=cpc&utm_campaign=Fibromyalgia

Low-Carb, GLuten Free One Minute Muffin!

Have you heard of the One Minute Muffin?

1/4 cup ground flaxseed [ or almond flour]
1/2 t baking powder
[optional 1/4 t cinnamon or pumpkin pie spice, plus 1 t sugar or substitute OR chocolate OR garlic and italian seasonings; also try splash of vanilla]
1 T butter
1 large egg
pinch of salt



Can add berries and or dollop of Cool Whip on top too!

Melt the butter in a small microwave container (I use a 10 ounce pyrex thing). Mix the dry stuff. Crack the egg into the butter and mix with a fork - stir it up really good. Add the dry stuff, blend until well mixed. Put it in the microwave for ONE MINUTE - hence the name.

Eat steaming hot... or let it cool a bit. Good as a sandwich, good with cheese inside, cut in half and toast! It really hits my bready spot.

Play around with ingredients and flavors!

How to Kindly Acknowlege Unsolicted Treatment Advice

http://arthritis.about.com/od/solvingdifficultissues/a/How-To-Handle-Unsolicited-Advice-About-Arthritis.htm?nl=1

Eve though the article references arthritis, this is also very applicable to fibromyalgia, chronic fatigue, and other chronic illnesses. GOOD advice on how to handle unsolicited advice from others on how to treat your condition! I am always caught off guard, so this article gave me some good phrases to use next time.

Venus Williams & Autoimmune?

Article about Venus Williams possibly having Sjogren's (autoimmune):

http://arthritis.about.com/b/2011/08/31/sjogrens-syndrome-knocks-venus-williams-out-of-the-game.htm?nl=1


Here's is an article that theorizes it may have been more than Sjogren's, maybe fibromyalgia also:

http://blogs.prevention.com/prevention-news/2011/09/02/venus-williams-is-it-sjorgens-syndrome-or-something-else/


I think it will be interesting to see how this develops for Venus, as we all know how both Sjogren's and Fibro are life-altering chronic illnesses. It's hard to find celebrities who are open about facing such challenging autoimmune illnesses, and its because of the same fears that we all face - the stigma of not being well enough, not being perfect, not being able to perform to the best of our abilities, looking well but not actually feeling well. As a celebrity, sports figure or famous person they are constantly in the spotlight and are under an even higher level of scrutiny than most. So being open about a chronic, debilitating illness could often be a career killer for them, thus they often feel a better move is to keep it quiet.

In a way I feel it is a shame, as I feel we need more on our side who can use their powers of influence to communicate the seriousness of the conditions and the challenges we face, and to inspire. I am proud that Phil Mickelson has come out and been so open about his struggles with psoriatic arthritis (also autoimmune.) So again, I am very curious to follow Venus Williams and her health, I hope she can also (unfortunately) highlight the struggles of chronic illness and be an inspiration to understand and manage chronic illnesses.

Yoga Helps Fibromyalgia Studies Show

YAY! My only problem is dealing overcoming the chronic fatigue in order to get to the yoga class :) But I love this article, and that more studies are being done to show how good yoga is for us!

http://www.yogabasics.com/connect/yoga-helps-fibromyalgia-patients.html

AND by the way, September is National Yoga Month! Check out the link below to find free classes in your area to give yoga a try! As a fibromite I tell the instructor before class that I have fibro, and sometimes they don't know what that means, but I just tell them that I go at my own pace and if I break into a child's pose for a few not to be offended.

http://www.yogamonth.org/

Discover Your New Normal

I really like this article, thank you Keri for the inspiration. Its difficult, but once diagnosed with a chronic illness we do have to discover our "new normal." Because I have an invisible illness, people look at me and say "well you seem to be feeling better." But in reality, I am just "dealing better," as I have discovered my new normal.

http://invisibleillnessweek.com/2010/09/14/discovering-a-new-normal/

To Get Things Accomplished and Keep Sanity :)

Dealing with fibro is difficult.  Remembering things is difficult. Having the energy to get things done, is difficult. It's also all overwhelming. Trying to maintain and live a semi-normal life is a real struggle for me, on a daily basis.

Before fibro, I was the over-accomplished Type-A do more, go go go type person. I have had to cut back, give myself breaks, take on less. It drives me nuts, as I like to accomplish a lot, get  alot done, fit a lot into my days. But in order to keep fibro in check I have to reduce stress, and not overexert in any way. I have to maintain a normal sleeping and eating schedule, stick to it strictly (hard, very hard for me.)

So I have come up with a way to get things done and still maintain my sense of sanity and accomplishment. It may sound simple, and childish, and really silly, but it really helps me. The night before a weekend-day I choose the top 4 things I need to accomplish the next day.  I don't write them down, I challenge myself to remember them, all 4. (And I promise myself not to worry about anything else that needs to get done, I will add it to another days list.) I keep reminding myself of the list of 4, all evening/night, and the next morning :) At the end of the weekend-day I review, if I am able to accomplish all 4 I am super happy, even if I do 3 of the 4, I am still pretty delighted with myself. For weekdays I usually lessen the to dos, to 2 or 3 (and 1 of these to dos is always taken up by work, the ol 9-6 thing which exhausts me utterly making it difficult to do anything else.) These things can be big or small, from do the dishes, laundry, mail a package, to go to a friends dinner or party.

It helps me, I feel a sense of accomplishment and I feel good about remembering :)

National Invisible Chronic Illness Awareness Week!

Coming up soon! September 12 - 18, 2011:


http://invisibleillnessweek.com/



This year's theme is "Deep Breath, Start Fresh"

http://invisibleillnessweek.com/about/faq-about-2010-invisible-illness-week/

Great Site for tracking Chronic Illness

Super "Like" : http://www.patientslikeme.com

I can't stress how much I like this website. I found it pretty early on after my fibro diagnosis. It allows you to create an account and list your illness(es) and symptoms, and treatments, and rate everything, and chart everything, and pull together all the data for you to print for doctor appts! I login every once in a while to add new treatments, or report stoppage of certain treatments, and then at that time I also rate all my symptoms and how I am feeling (it gets very detailed) and then it charts it, so I can see over the year and half my struggles, and it color codes them, so my doctor can quickly glance and see too. Let me upload some screen shot from my profile, so you can see...


Here you can see my main symptoms, and how its really the fatigue that rules my day rather than pain, which is a minority; and it the small chart directly below it you can see my abilities latetly to function as a normal human being, not great:

 

Below is just a snipped of more detailed symptoms (they file an entire screen) green is non-existent, red is severe, and yellow is mild, oragne is moderate. very interesting I think, to look at visually, and to see how symptoms change over time:

And finally my list of treatments:

Great Article About Accepting Your Chronic Illness

Its is very, very difficult to accept a chronic illness diagnosis. I know I went to about a dozen doctors, looking for a different diagnosis, something easier than fibromyalgia, something more known. Or a lab mistake, or a simple diagnosis like the flu. Anything, anything but the awful fate of dealing the rest of my life with the daily struggles of fibromylagia. But then I read 2 books, and I know I have mentioned them several, several times before, but they really did mark the turning point in my life with fibro. (FibroWhyalgia, by Sue Ingebretson, and How To Be Sick, by Toni Bernhard) They helped me get to the point of acceptance, which when you read this article you will see is so important in living with a chronic illness.

You have to read this article, by Lana Barhum, from the National Invisible Chronic Illness Awareness Week website:

What Does it Mean to Accept Your Chronic Illness Diagnosis

http://invisibleillnessweek.com/2011/08/18/what-does-it-mean-to-accept-your-chronic-illness-diagnosis/

"With chronic illness, the sooner you accept your diagnosis, the sooner you can work on being healthy."

A few months after my rheumatoid arthritis diagnosis, I was also diagnosed with fibromyalgia syndrome (FMS) and the blurry reality of what was my life started to become clearer.
I had spent ten years trying to find answers and one day I had them. What I realized at that point was that I had the power to heal because I had already started to find out how by searching for and finding answers."

"I sought support from others who were living with the disease and I knew that if I wanted to get better, I had to accept that a handful of pills weren’t enough."

"I also looked at my life as lesson after lesson of patience, strength and survival."

"Of course, it wasn’t easy to get to that point because living with an invisible condition (or two or three or more) isn’t that simple."

"You lose a lot of friends and there are a lot of people who don’t understand but what the illness doesn’t control is how we respond, how we fight back and how we go on the defense against the war waging inside our bodies."


"Chronic illness is kind of like life with its all ups and downs but living with an invisible chronic disease is like life multiplied and so very complicated. It is never ending roller coaster of pain and emotions."

"There is also about a lack of understanding amongst your family, your friends, your coworkers, and even complete strangers. It is about living life without knowing what tomorrow will bring and it is an emotional battle on a daily basis." 

"There will be days where your pain and fatigue are under control. There will be days when you feel productive and that you are in control of your life and your body again. It will not feel like a death sentence forever. On the other hand, there will be days that it will feel like the disease is in control when you are in pain, you are tired and you can’t focus or get anything done. The disease doesn’t get easier but getting through those really bad days does get easier."

"As a long time sufferer, I have learned that there can be more good days by making good choices. You have to do all the right things like eating right, taking your medications, being active on good days, and resting on bad ones. It is a learning process like anything else in your life and the setbacks–they are part of life too. You can’t control the setbacks regardless of how well you plan and a flare-up can come on at the worst possible time.
All you can do is wait to feel better and you can’t always predict how many good days you will have so try not to overwork yourself because you don’t know when your next good day will be."

"Understand and remind yourself that a chronic illness is unpredictable. There is not much that you can do except to realize you have to adjust and adapt to the moments that the disease brings havoc to your life."

"The best thing you can do for yourself is to accept that you have to be flexible to live successfully with your chronic invisible disease. The disease might be your new reality but learning to be flexible means that you accept chronic illness in your life not that you give up. Your life will never go back to “before your diagnosis,” but it can get close to it if you open your mind to what you need to do to get to that point where you can accept diagnosis in a way that means you don’t give up."