Thursday, September 30, 2010

Cuddle Ewe for Fibro and CFS?

Ok question. Has anyone treid any of the Cuddle Ewe products?

http://www.cuddleewe.com

I see them advertised all the time on Prohealth for fibro and cfs and just good sleep. I know how important tackling the sleep issue is so if this is worth the $$ and would help me even more I'd love to try it.

I've also been struggling with a lot of lower back pain lately, radiating into my legs :( So I am guessing at this point I may be salivating over anything like this that looks like it will provide awesome relief and comfort!

Please let me know any feedback if possible.

Monday, September 27, 2010

Quack Watch

I came across this informational link in a discussion post in the ChronicBabe forums and found it pretty interesting:

http://www.quackwatch.com/01QuackeryRelatedTopics/spotquack.html

It is a good reminder that with everything that we suffer from on a pretty consistent basis, to be on the alert for "quacks" out there who will take advantage of our relentless suffering. The quacks' promises just seem too good to be true, and if we are really suffering we may fall prey! For example, I really want to see an herbalist or nutritionist type person to help me with the supplements I take, but after viewing their info often certain red flags go off. The number one tipoff or lets says turnoff for me is if they want me to buy *their* products only. I feel that a good herbalist/naturopath(?) would focus on guiding me in the effects of the herbs/supplements, and not focus on making me purchase *their* herbs. Another turnoff is that they are usually hundreds of dollars per visit, and of course don't take insurance.

Not every alternative practitioner is a quack. There are nutritionists, herbalists, naturopaths and people that are doing their own research and honestly seeking to help people. More power to them, and I hope those folks will be able to make great strides that will eventually help develop better treatments later down the road. Unfortunately there are people out there who don't have the best interests of patients in mind and are looking to make a profit by taking advantage of people who are hurting and desperate who have had very little luck with traditional practices and are willing to do (and more importantly, pay) anything if it promises to bring some modicum of relief. It's these snake-oil salesmen that make my blood boil, and I think it's important for us to supply ourselves with the proper tools to spot these people, so that when we are at a low, miserable point in our lives when nothing seems to be working and you are at your wits' end, we will be able to tell the difference between those trying to help and those looking to take advantage.

So be careful fibros, quacks will rely highly on your emotional state, desire for relief, need for action, and try to create fear of what will happen if you don't follow their guidelines.   

I also think its a shame that the pharmaceutical and alternative medicine interests can't work together, and that doctors seem to veer first to pharmaceuticals, when in fact supplements may have the same effect! But of course supplements can be much less expensive and available, and I guess we aren't supposed to find that out.....For example - I was prescribed Limbrel for my joint pain, and through my prescription plan it was $50/month. I did a little research, and 1. Limbrel is a food medicine, meaning ITS MADE FROM HERBS!!!! 2. The SAME ingredients are found in OVER THE COUNTER Move-Free Joint supplement! (For less than $50/month of course!!!)

I think with everything that we do, taking charge and being our own health advocates, we have to be on alert for what seems reasonable, and what seems too good to be true, and share with each other the information to know the difference!

*hugs* 


Thursday, September 23, 2010

Book Review: How to Be Sick, Toni Bernhard

How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
by Toni Bernhard


I finished this book a few days ago, and wanted to take the time to write a proper book review. This book, and my FibroWHYalgia book, well they are my best friends now :)






THIS IS AN EXCELLENT BOOK! As you know, I am a newbie to chronic illness (1 year in from a fibromyalgia diagnosis) and prior to this book I had very little knowledge about Buddhism, but having done yoga for almost 2 years now I had built up an interest into looking into Buddhism more. So thus this book seemed like it was meant for me!

But please don't be confused with the title, yes this book is about How to Be Sick, but How to Be Sick and SURVIVE and maintain your sanity! (Because we all know chronic means forever, so we have to come to terms with the fact that we will always be sick.) And you don't have to be a Buddhist to learn these "survival techniques" as I call them. Toni's methods are Buddhist-inspired and anyone can learn them and really benefit from them! (Even if you don't have a chronic illness!)

Toni, the author, took almost 10 years to write this book, while dealing with her chronic illness. I appreciate that it was written from the point of the view of an actual sufferer, and I really admire that she was able to write a book AND deal with her illness! What inspiration she is! Her focus in the book is not on her actual illness, but is on how to overcome the struggles, showing that this book and the "survival techniques" she discusses are applicable to so many different chronic illnesses and even caregivers. Even though we suffer from different chronic illnesses, I could relate to her daily challenges, and the ups and downs she described facing her illness, and the despair of facing a lifetime of this. Her methods of dealing, coping and surviving not only gave me solace but continue to inspire me and give me hope in life on a daily basis.

Since my fibro diagnosis I have read all kinds of books, but this is one of two that has given me true direction and comfort in dealing with my illness. No technical medical jargon, no scientific this and that. Just straight up honesty, from the heart, from experience. Each chapter and subject flows easily into the next and builds upon your learning and awareness. She also presents a guide in the back of the book, a type of summary of her survival techniques, which really makes for a great reference. Although I think I ran through an entire highlighter while reading the book, making my own notes and highlights, which I also reference quite often :)



Read it. You will find happiness, peace, serenity.

100 QUESTIONS & ANSWERS ABOUT FIBROMYALGIA

I have 2 general rules when I am looking into books on fibromyalgia. One, I like to make sure that at least one of the authors has experienced fibro. I feel that if you experience it, then you really get it. And two, I like to read and resource books that are fairly recent (2009, 2010, maybe 2008) as I feel that things are always advancing in science and I like to keep with the most current and relevant.

With that being said, below is a brief review of the latest fibro book I have read. Sharon is a fibro sufferer, and Martin has done extensive research and treatment in fibromyalgia. The book was just released, 2010.


100 QUESTIONS & ANSWERS ABOUT FIBROMYALGIA
by Sharon Ostalecki, PhD
Martin S. Tamler, MD, FAAPMR


Have you just been diagnosed with fibromyalgia? This is a good starter book. It really lays out all the common questions and concerns in a brief but thorough way. Easily referenceable.

Topics covered:
1. The Basics
2. Sleep
3. Associated Pain Conditions
4. Pharmacologic Management
5. Complementary Approach

The Sleep section is very thorough about explaining why good, deep sleep is so important and the science behind it. I think of all my reading, this seems to be one of the biggest keys to feeling better, conquer your sleep issues and you will feel a huge difference!

There are also a lot more associated conditions, but I think this is a good start at looking at some of the most common.

I like that the Complementary Approach section is larger that the Pharmacologic :) But I think they could have touched on more specifics on nutrition a bit more.

Sunday, September 19, 2010

Organic Foods Worth Paying More For

http://www.everydayhealth.com/longevity/your-organic-food-guide.aspx?xid=nl_EverydayHealthDietandNutrition_20100821

Read the article to find out more about organic foods and organic food labeling.

The following fruits and vegetables have been identified as requiring high levels of pesticide use when conventionally grown, so, as a general rule, they are safest when grown organically:
  • Apples
  • Bell peppers
  • Carrots
  • Celery
  • Cherries
  • Grapes
  • Kale
  • Lettuce
  • Nectarines
  • Peaches
  • Pears
  • Strawberries

15 Foods That Don’t Have to be Organic
Fruits and vegetables that are conventionally grown with relatively fewer pesticides include the following:
  • Asparagus
  • Avocado
  • Broccoli
  • Cabbage
  • Eggplant
  • Kiwi
  • Mango
  • Onion
  • Papaya
  • Pineapple
  • Sweet corn
  • Sweet peas
  • Sweet potatoes
  • Watermelon
  • Tomato

Saturday, September 18, 2010

Book: The Ten Best Questions for Living with Fibromyalgia

The Ten Best Questions for Living with Fibromyalgia
The Script You Need to Take Control of Your Health

Dede Bonnerm PhD

2009

Dr. Bonner is an internationally acclaimed expert in questioning skills.

While she does not have fibromyalgia or CFS, I found this book to be a good guide from your moment of diagnosis to creating your own plan.

She tackles the 10 Best Questions in each of these Categories:

1. Talking To Your Doctor: everything from choosing a good doctor to getting a second opinion
2. Choosing Treatments: From medications to alternative therapies
3. Making Healthy Lifestyle Changes:  Getting good sleep, taming stress, eating well and identifying an exercise regimine suited for you
4. Building Your Future Life and Good Relationships: Telling others, support groups, family, sex and intimacy

Well worth a read. It is current and very helpful.

You CAN live WELL with fibromyalgia, you just have to learn how to take charge of your fibro and find treatments and lifestyle changes that work for you!

Friday, September 17, 2010

"Life is All About Plan B" 2001 Calendar by Suzy Toronto

LOVE LOVE LOVE!!! I was at a Cracker Barrel restaurant with my Mom and came across this calendar for 2011. The calendar title caught my attention, and as I read through each month it really resonated with me and where I am in life (and fibro life!) right now. I felt it woule good inspiration for 2011!

http://suzytoronto.com/component/option,com_virtuemart/page,shop.product_details/flypage,shop.flypage/product_id,2208/Itemid,40/

For example, here is the Plan B/ January details (I mean hello, does this not exactly describe dealing with fibro or what?!!)

"Plan A is always my first choice. 'You know, happily ever after.' But more often than not, I find myself dealing with the upside-down, inside-out version, where nothing goes as it should. It's at this point that the real test of my character comes in... Do I sink or swim? Do I wallow in self-pity and play the victim or simply shift gears and make the best of the situation? The choice is mine. After all... life is all about how you handle Plan B."

Thursday, September 16, 2010

Read a Good Book? Donate a Copy!

I have read two books about fibro and chronic illness that I absolutely love and will keep on-hand always, as I have highlighted and re-read the heck out of them (ok, I am not finished reading "How to Be Sick" by Toni Bernhard - but I am already so enthralled with it and so many pages are dogearred!)

My other fav of course is FibroWHYalgia :) by Sue Ingebretson

I checked with my local library, and since these are fairly new books they do not have them yet. I've purchased new copies of each and am donating them to the Broward County library system. I really feel they need to be out there for everyone to easily access!

If you find books you enjoy a much as I love these, I encourage you to do the same if possible!

Good Quote - Obstacles

"Obstacles are those frightful things you see when you take your eyes off your goals."

Monday, September 13, 2010

Invisible Illness Week Sept 13th - 19th, 2010

I found this post on another blog, http://www.glassofwin.com, and have adapted with my answers. Read it, pass it along, fill it out, spread the word this week about invisible ilnnesses!

30 THINGS ABOUT MY INVISIBLE ILLNESS

1. The illness I live with is: Fibromyalgia | Chronic Fatigue | Migraines
2. I was diagnosed with it in the year: 2009 | 2009 | 1988
3. But I had symptoms since:
— | early 80's at least
4. The biggest adjustment I’ve had to make is: Not having the energy to do as much as I would like; my whole life is one constant adjustment.
5. Most people assume: I can do something simple (like take vitamins, prescriptions or not eat a certain food) and be back to normal.
6. The hardest part about mornings are: Just getting out of bed is so hard :( I have 7 alarms to get me up!!
7. My favorite medical TV show is: Grey's Anatomy. I'm a sucker for HOT MEN!! :)
8. A gadget I couldn’t live without is: my smartphone; it saves me wasted time and keeps me connected
9. The hardest part about nights is: getting to sleep!  No matter how tired and fatigued I am throughout the day, I just cannot fall asleep come bedtime :(
10. Each day I take a minimum of: 24 pills – 4 meds,19 vitamins/supplements, 1 OTC
11. Regarding alternative treatments I: I do as much as I can, LOVE my yoga even though at times I struggle; I have discovered a lot of supplements and foods that help me in stead of prescription meds
12. If I had to choose between an invisible illness or visible I would choose: I would choose to have both if it meant someone else would not have to have one. I would not wish either on my worst enemy :(
13. Regarding working and career: I have a very understanding employer, and with adjustments I am able to keep working so far. I am far along enough in my career that its easy for me to successfully get my required work done.
14. People would be surprised to know: What all I keep inside. There is a lot of misery and anger that I do not share.
15. The hardest thing to accept about my new reality has been: Just trying to feel somewhat normal :(
16. Something I never thought I could do with my illness that I did was: I haven’t gotten there yet, but I am aiming to getting married and have a family :) Some days it seems like it might be an overwhelming challenge.
17. The commercials about my illness: Are WAY too BRIEF!!! They don't even touch the tip of the iceberg when it comes to fibro; It gives a false impression of how we suffer, and a false impression that you "just take Lyrica" and will "be all better."
18. Something I really miss doing since I was diagnosed is: Being able to do more active things
19. It was really hard to have to give up: sexy shoes :(
20. A new hobby I have taken up since my diagnosis is: Meditation; blogging :)
21. If I could have one day of feeling normal again I would: go to the zoo; I am afraid to attempt it these days, afraid I would get too tired and sore
22. My illness has taught me: How invincible I am
23. Want to know a secret? One thing people say that gets under my skin is: I just hate it when people assume things and play armchair doctor with me. Walk a day in my shoes and see how you deal!
24. But I love it when people: Take the time to understand me and what I go through.
25. My favorite motto, scripture, quote that gets me through tough times is: “Don't frown because you never know who may be falling in love with your smile"
26. When someone is diagnosed I’d like to tell them: You'll be ok, you are strong. Your reality is just different now.
27. Something that has surprised me about living with an illness is: The daily struggles, and new struggles and symptoms that pop up :( Each day seems to bring something different/new!
28. The nicest thing someone did for me when I wasn’t feeling well was: Make me laugh, I love laughing.
29. I’m involved with Invisible Illness Week because: I just learned about it and I’d like to make new friends who I can relate to and be there for!
30. The fact that you read this list makes me feel: Appreciative :)

Spread the love and fill out this Meme if you have a Chronic Invisible Illness and want to blog for NICIAW

Worrying Advice

Someone gave me this advice one time, and I really liked it:

When worrying about the outcome of a situation, to ease your nerves and worries, answer these 3 questions:

  1. What is the worst that could happen?
  2. What is the best that could happen?
  3. What is most likely to happen?

Once you have gone through each of these possible scenarios, you should feel more at ease and prepared for the outcome.


Sometimes this helps a lot with doctor visits :) or new symptoms that crop up :)

Sunday, September 12, 2010

The Key to Entertaining: Pacing Yourself

These are some good tips for entertaining despite our chronic pain and fatigue (because we all know we need a good circle of friends around us! And whats more fun than a get together?!):

http://somebodyhealme.dianalee.net/2010/07/simplify-life-with-migraines-chronic.html

Saturday, September 11, 2010

New Book: The Carb Lover's Diet

Learn that you CAN eat carbs and still lose weight and eat healthy - learn to eat the RIGHT carbs for your health!

This book just came out, is on my list to pick up this week. Saw this preview of a recipe from the book on health.com. Was YUMMY!!! and EASY!!

I bought the whole wheat tortillas, and seasoned black beans, was DELICIOUS!

http://www.carblovers.com/health/carblovers/recipe_page.jsp?id=1989934&name=Black%20Bean%20Tacos

Black Bean Tacos

Prep: 5 minutes
Total Time: <10 minutes
Makes: 2 servings

1 (15-ounce) can black beans, rinsed and drained
6 (6-inch) corn tortillas
6 tablespoons shredded Cheddar cheese
2 cups shredded romaine lettuce
1 cup grated carrot
1/4 cup salsa
1. Microwave beans on HIGH 2 minutes, or until heated through.

2. Heat a nonstick skillet over medium heat. Add tortillas, one at a time; cook 1 minute on each side.

3. Divide beans evenly among tortillas. Top with even amounts of cheese, lettuce, carrot, and salsa.

Serving size:
Calories 380; Fat 8g (sat 5g, mono0.5g, poly 1g); Cholesterol 25mg; Protein: 18g; Carbohydrate 67g; Sugars 6g; Fiber 17g; RS 4.7g; Sodium 780mg

Thursday, September 9, 2010

Massage for Fibromyalgia

http://altmedicine.about.com/od/fibromyalgia/a/fibromyalgia_massage.htm?nl=1

Some studies have shown that massage on a regular basis can have neurological, psychological and reflexive effects to help reduce depression, ease inflammation and pain, lessen stress and tension, promote relaxation, increase muscular relaxation, mobilize fluids and eliminate toxins and even help with sleep. Studies have also shown it to stimulate the release of endorphins and increase serotonin levels and lower blood pressure. Touch has a long history of being a natural, essential component of healing and health maintenance and can help increase positive well-being.

I make it a point to go to Massage Envy (they are located all over the U.S.) once a month for a massage. I have found several therapists there who are familiar with helping trea fibro. I am able to tolerate a light massage and I can feel the benefits of it in helping me unwind, de-stress, refresh my muscles, and I feel it helps get toxins out of my muscles. I love it.

Sunday, September 5, 2010

Tai Chi for Fibro

This has gotten a lot of attention lately, and I am so glad! I wanted to share the article from the NY Times, link below.

While I have not tried Tai Chi, I feel yoga has a lot of similar components. I have tried Qigong which is also very similar, and I really enjoy this as well. (I bought a Qi Gong DVD which I follow: Qi Gong for Cleansing (2005) with Daisy Lee Garripoli and Francesco Garripoli)

http://www.nytimes.com/2010/08/19/health/19taichi.html?_r=1 

Some key quotes from the article:

Dr. Chenchen Wang, a Tufts rheumatologist who led the study, said she attributed the results to the fact that “fibromyalgia is a very complex problem” and “tai chi has multiple components — physical, psychological, social and spiritual.”

After a few weeks, a patient she said she began to feel better, and after 12 weeks “the pain had diminished 90 percent.” She has continued tai chi, lost 50 pounds and can walk three to seven miles a day.


“You could not have convinced me that I would ever have done this or continued with this,” she said. “I wouldn’t say it’s a cure. I will say it’s an effective method of controlling pain.”

The physician said it offered an inexpensive and “gentler option” for patients deterred by other physical activities. “The mind-body connections set it apart from other exercises,” she said, adding that doctors are seeking “anything we can offer that will make patients say ‘I can really do this.’ ”

Saturday, September 4, 2010

Water, So Good for You!

I can't emphasize enough how drinking enough water each day will make a big difference in how you feel. (I know it really does for me!) And doctors agree! I like these tips about how to easily get your 8 daily glasses of water:


from http://www.empowereddoctor.com/doctor_story.php?storyid=1760&id=2786


-- Ease into it. Start with just one or two glasses of water a day, maybe one in the morning and one at night. Gradually increase the amount.
   
-- Create a morning ritual. Some medical experts say many of us wake up dehydrated. The first thing to do in the morning, then, is to drink two glasses of water. If you make this a morning habit, it can create the momentum for drinking more during the rest of the day.
   
-- Drown a snack attack. Drinking a glass or two of water can make you feel full, short-circuiting a food craving.
   
-- Add lemon juice. When you first start to drink more water, it can be a real chore – and adding lemon juice can make it more doable. At restaurants, ask for lemon slices with your water. They gladly supply them.
   
-- Think about healthy skin. There may be a correlation between drinking a lot of water and healthy, glowing skin. Think about this to encourage yourself to drink more water.
   
-- Drink hot water. Instead of drinking tea or coffee, which are diuretics that increase the amount of water your body loses through urination, drink a mug of hot water. It gives you psychological comfort without any calories or other items.
   
-- Drink water at restaurants. It’s free, after all.
   
-- Have water near you while working. Having a full glass handy will give you something to sip on while you’re thinking, typing, creating or otherwise working.
   
-- Your urine guide. Drink more water if your urine is dark yellow. That means you’re dehydrated.

Thursday, September 2, 2010

Seasonal Allergies and Related Foods!

I read this in the September issue of Health magazine:

If you have fall allergies, you may be able to minimize your symptoms by skipping certain foods and drinks, says Clifford Bassett, MD, member of the public-education committee of the American College of Allergy, Asthma and Immunology. Your body interprets chemicals in these foods the way it would allergens like pollen - which can lead to itchiness or tingling in your mouth and throat, as well as worsening of your sneezing, runny nose, or watery eyes. Check this chart for surprising triggers, and consider avoiding them.

IF YOU'RE ALLERGIC TO —     Avoid:

RAGWEED — Bananas, canteloupes, chamomile tea (a close cousin of ragweed), echinacea (another close ragweed relative), honeydews, watermelons and zucchinis

TREE POLLEN — Almonds, apples, carrots, cherries, hazelnuts, peaches, pears, plums

GRASS — Melons, oranges, tomatoes

ANY SEASONAL ALLERGENS — Beer, liquor, wine (all three contain histamine, a compound that triggers allergy symptoms like itching and swelling)

Wednesday, September 1, 2010

New Book Just Released Today!



Check it Out!

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

[Paperback] 

by Toni Bernhard

I am purchasing asap, will let you know my thoughts as I am reading it!