Sunday, August 28, 2011

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.

Wednesday, August 24, 2011

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 :)

Monday, August 22, 2011

Great Site for tracking Chronic Illness

Super "Like" :

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

"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."

Sunday, August 21, 2011

Inspirational Quote for those struggling with Chronic Illness

"You have to accept whatever comes and the only important thing is that you meet it with courage and with the best you have to give." 
 - Eleanor Roosevelt

Thursday, August 18, 2011

Johns Hopkins & Fibromyalgia

I was on this site, looking into Johns Hopkins for medical care, and found the fibro info, and I really like the way it is phrased here:

"Due to the constellation of symptoms associated with FM its impact can be severe."

"One patient recently referred to their FM as, "A body toothache that stays with me all the time." 

I read through all the fibro info on this Johns Hopkins site, and I was really impressed and comfortable with the info they provide, it seems very relevant, current and accurate. Please take the time to read through their site, I have provided below some good examples of the info and details they discuss.

"Although the cause or causes of FM remains to be determined, most researchers believe that the widespread pain, the hallmark symptom of FM, is due to abnormalities in central nervous system function."

"With regard to nervous system function, it is thought that persons with FM experience pain amplification due to abnormal sensory processing in the central nervous system."

"Finally, recent studies show that genetic factors may predispose individuals to a genetic susceptibility to FM. For some, the onset of FM is slow; however, in a large percentage of persons the onset is triggered by an illness or injury that causes trauma to the body. These events may elicit an undetected physiological problem already present."


"The comprehensive treatment of FM falls along 4 broad categories: education, symptom management, cognitive behavior therapy, and complementary approaches."

"Complementary Approaches:
There are literally dozens of complementary therapies to treat FM and its associated symptomsref 5. They include, but are not limited to: physical therapy, therapeutic massage, myofascial release therapy, water therapy, exercise and physical activity, acupressure, application of heat or cold, acupuncture, yoga, relaxation exercises, breathing techniques, aromatherapy, biofeedback, herbs, hypnosis, nutritional supplements, and osteopathic or chiropractic manipulation. Of these, exercise is the only treatment approach that has been tested in randomized controlled clinical trials and shown to improve fitness, self-assessment of improvement, and reduce tender point countsref 10, 11. Nonetheless, anecdotally persons with FM have reported significant improvements in symptoms with complementary approaches. Even if the benefits of such approaches derive from placebo effects, it is valuable to encourage persons with FM to explore the range of different treatments and thereby take an active role in the management of their disease"

Wednesday, August 17, 2011

Easy, Healthy Black Bean Chili

Ok one more from my glorious weekend of cooking! (I modified the actual recipe, that I found on Betty Crocker.)

2 c. chicken broth
1 tbsp olive oil
2 large onions, chopped / or 2 scallions chopped
1/2 c. celery, chopped
1/2 c. carrots, chopped
1/2 c. red bell pepper, chopped
2 cans black beans, drained
1 large tomato, chopped (I used diced tomatoes with basil and oregano, from a can)
2 tbsp finely chopped garlic
2 tbsp honey
4 tsp chili powder
1 tsp ground cumin
1/2 tsp dried oregano
1/4 c. fresh cilantro
salt and pepper

I combined all ingredients in a crock pot for 6 hours.

Top with shredded cheese or dollop of sour cream, if desired.


Tuesday, August 16, 2011

Herb and Scallion Rice

I also discovered this recipe this past weekend from Martha Stewart Living:

1 2/3 c. water
1/2 c. packed cilantro
1/4 c. fresh packed mint
2 scallions, chopped
1 garlic glove
1 tbsp olive oil
1 cup jasmine rice
coarse salt

1. Puree water, cilantro, mint, scallions and garlic in a blender until smooth.
2. Heat oil in a saucepan over high heat. Add rice and stir to coat. Cook until slightly toasted, 1 to 2 minutes. Add herb puree and 1 tbsp slt. Bring to  simmer. Reduce heat to low and cook covered for 20 min.
3. Remove from heat and let stand, covered, for 10 min. Fluff with a fork before serving.

Delish! Healthy! GLUTEN-FREE!!

Monday, August 15, 2011

Refreshing Papaya Watermelon Mocktail

I discovered this quick, easy and tasty recipe in a recent issue of Whole Living magazine ( (recipe by Charlotte March)

I tried it out this weekend and it is so refeshing and I love that it is healthy too! I suppose you could add a splash of alcohol to it, but eh, virgin is good enough for me!

It offers vitamins A and C, high fiber content good for digestion (papaya), anti-imflammatory cartenoids (from the jalapenos), and is ultra-hydrating (watermelon).


Puree 3/4 cup diced papaya, 1 cup diced watermelon, 1 tbsp lime juice, and 1/2 red jalapeno (sliced, seeded if desired to reduce heat) in a blender until smooth. Strain and chill. Service over ice and garnish with a slice of the lime and jalapeno.

The jalapeno does make it super spicy, the second time I made it I substituted fresh chopped mint for the jalepeno, and was just and good and refreshing!


Sunday, August 14, 2011

Chuck Close - Rising Above Disabilities

I subscribe to Neurology Now magazine (is free, check out their website: ) and a recent feature article portrayed the artist Chuck Close. Throughout his life he has developed several afflictions, including dyslexia, paralysis and face blindness. Reading the article was very inspirational, as not only has he overcome and learned to work with his disabilities, but he has attributed his success to his dealing with his disabilities. For anyone dealing with a chronic illness reading this article is a must:,_paralysis,_face.10.aspx

Friday, August 12, 2011

Drugs and Fibromyalgia

Wow, this study and results are quite surprising! The popular fibromyalgia drugs (Savella, Lyrica, Cymbalta) were rated by patients as making fibro WORSE. The highest rated helpfuls for fibro were lifestyle changes - rest, de-stress, relaxation, good sleep, avoid alcohol. I am glad to see that my yoga, qi gong and massage is also on there and rated as quite helpful, I know they are great aids for me too!

Monday, August 8, 2011


I just discovered this site, they have the shoe brands that I have relied upon as super comfy, and they have them at VERY affordable prices! Sign up for their deals emails, I can now affordably expand my shoe collection AND keep my feet feeling good!

Sunday, August 7, 2011

For Gluten-Free try Arepas!

I am trying to get back to the gluten free route again. I have strayed, and unfortunately seem to be having some terrible tummy problems. I was reading in Jonny Bowden's book "Most Effective Natural Cures on Earth" about IBS, and he suggested cutting out: gluten, dairy and sugar. I am pretty good at the dairy and sugar thing, but I need to get back on track with the gluten-free living. He also suggested secondarily to cut out red meat, citrus, caffeine and alcohol.

Anyhoo, I am getting off topic. So I was at the grocery store the other day and found some ready-made arepas, and threw them in my basket to give them a try. They are made from corn, so no gluten! Yay! A friend suggested I throw them on the george foreman and grill them to make a sandwhich, which I did, for about 5 minutes to get them crispy, works awesome for sandwiches! The packaging suggests toaster, which I tried today, not as successful. Still tasty, but the little buggers are so thin that they fall thru the grating in the toaster :/ A toaster oven would work awesome too with them I bet! And a regular grill would be great too I bet!

This is the brand I tried, maybe they are only available in South Florida grocery stores (?) but looks like you can order online :) If you see them, or ones like them give them a try! Is a quick, tasty gluten-free snack or meal! Can throw anything on one for open face (chicken, avaocados, butter and honey) or throw two together for a full sandwhich. Can go sweet or savory. Endless possibilities!