Archive for Chronic Fatigue Syndrome

Nuts for Nut Milks

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Nut Milk: yumm

Nuts over Nut Milk

Nuts for Nut Milks

Nut Milks!?  Make your own? Are you nuts?  That’s what I used to think. I thought people were kind of Nuts for Nut Milks.  I read the ingredients, and decided that there was too much nothing for the calories and the fat to be worth my time.  I went Nuts for Nut Milk in the wrong way. I silently chuckled at how many friends rushed to order soy milk lattes thinking it was better than plain old milk.  The stuff in boxes is just not that much better than cow milk.

Yesterday, with the right music and the right video everything changed. I think I can now be classed Nuts for Nut Milk! On top of everything else, nuts have an anti-inflammatory property that just makes it all the better. I have spent the last 4 hours on nut milk. Researching, writing and making some fun images for this post.  The simple recipe couldn’t be easier Read More→

Health Tool Kit: Reliable Resources

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Screen Shot 2015-12-21 at 11.31.13 AMHealth Tool Kit: Reliable Resources to guide older adults to learn about medical stuff.

Doesn’t it just make sense that you would learn as much as you can about a medical concern? That information is readily available. Credible. Reliable. Current. Medical information you can trust – and your doctor should too!

Have you ever heard these exclamations by your medical practitioner? “Be careful of what you read on the internet. That’s just internet hype.  You can’t trust what you read; why do you keep researching this; you should stop researching  – it just scares people…. ”

Has the staff at your doctor’s office looked at you like you were the crazy, nagging spouse who interferes with doctor / patient discussions? Have you left a medical appointment wanting to dig deeper into understanding an illness, medication, or treatment plan?  Do you feel a nagging suspicion you can learn more about what ails you or a loved one? Read More→

Where are Your Ducks?

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Or Find Your Zen Mode

Get Your Ducks In a Row

Your Ducks in a Row, they taught. They admonished. They berated.
It’s like saying to someone that if you can’t be perfect, don’t come home.

Plan Your Work and Work Your Plan — I heard it repeatedly throughout my life. It was my Dad’s favorite cliche and he used to encourage his sales team, then came home and told us the same thing. Echoing in my mind, in became a core part of my life.

Yours too, I bet. Because we are taught forever that we must have a plan and we must work that plan.

Well — this article is about Ducks.  Are they really ever going to stay in that perfectly aligned row?  Read my article, and know the truth about the darned ducks.

Where Are Your Ducks

THE WHOLE FLU SHOT THING!

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I was researching flu shots this morning as I once again ponder the dilemma. I’m healthy. I rarely get more than a cold. I’m not around kids. I don’t find a pull to get a flu shot except for the not so subtle badgering of the medical profiteers and fear mongers.

Why? Because I’m already healthy. I provide my body with the nutrition, exercise, and fresh air that triggers a healthy response to most illnesses, so my body does what it is supposed to do. (I don’t think I’ll regret stating that)

But there’s more to it. First of all there is a list of ingredients that the flu shots include. Two are known allergens to my body. Eggs and Thimerosol. Whoa — and another fun one you all know: Formaldehyde. Do you want that in your body?

This year, I was about to succumb to the politics and get the shot until I again read that it has the dreaded Thimerosal in it. Not going near that stuff ever again. And when I read more, I know more.

According to Mark Hyman, MD (a guru in our health coaching circles for his wealth of information):

There is a large grey area amidst the controversy about both the safety and the effectiveness of the flu vaccine. To learn more about this, go to The CDC’s “Flu View” for weekly updated surveillances on the flu: http://www.cdc.gov/flu/weekly/.

What’s In It? According to Hyman, a host of things I just don’t want. But the key for me is the Thimerosal. Here’s what Dr. Hyman put on his website:Oh my God!

Egg proteins: Including avian contaminant viruses
Formaldehyde: Known carcinogen
Thimerosal: Mercury-based preservative (only in multi-dose vials)
Other heavy metals such as aluminum: Known neurotoxin
Sugar: The essence of all inflammatory disease
Triton X100: A detergent
Other additives known to cause allergic reactions
The biggest controversy about the ingredients in the shot surrounds the use of the preservative thimerosal. Thimerosal contains mercury. Exposure to mercury leads to systemic health problems running the gamut from neurological dysfunction (memory loss, confusion, inability to concentrate) to depression, renal failure, skin troubles and gastrointestinal disturbances.

How Safe is the Flu Vaccine?
While the CDC reports that safety is always being monitored to ensure risk from the vaccine is negligible, certain serious complications have been reported:

Allergic reactions (anaphylactic)
Guillain-Barre Syndrome (can be fatal)
Neurological disorders

Knowing the difficulties of CFS/ME and how they are already impairing my family, I have no patience for added complications.
But that brings up a couple concerns. IF someone is part of the Class that is always recommended to get the vaccine, do they or not:

Ideal Candidates for the Vaccine:

Asthmatics
Immuno-compromised patients
Heart disease patients
Diabetics
Morbidly obese

Someone the other day told me that he had asthma as a child, so the ADA recommends he get a flu shot today at 45 years old.
My parents always got their flu shots. Mom always got a flu and Dad never got sick for more than a day. But both always got their flu shot. The worst cold I’d ehealthy-life-concept-handwriting-words-teen-topics-34254289ver had was actually a flu that resulted in a life long battle with an asthmatic response to certain scents. Smells. I don’t’ have normal asthma. And I never had it the before I got that flu shot in 1993. So what to do today? Live a Healthy Life. Eliminate the odds of illness by doing what you already know is best for you.

WE MUST BE OUR OWN ADVOCATES!

I’ll take my chances. The point of the matter is we all need desperately to get some truthful information that doesn’t scream of medical harassment to follow a protocol that may not be critical.
I call it harassment because I feel like I am bombarded by fear mongering about getting the flu when in reality I still get to choose. Just yesterday I read about a woman who is branded at work by being forced to wear a mask that declares she chose to exercise her right of choice. That’s intimidation!

Nancy

Long Past Time for Respite

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Word of advice:
Don’t let your daughters grow up to be caregivers cuz it will no longer make a damned difference how smart, pretty, cute, competent, capable, skilled, educated or creative they might be. Teach your girls to be passionate, professional, and powerful. Make sure they understand the difference between caring, caregiving and caretaking. Don’t let them lose themselves as they care for others. It’s not heroic. It’s not good. This is 8 years now.

I can’t tell you how many people have told me I need a break.
I can’t tell you how many people have told me I need to take care of myself.
I can’t tell you how many people have suggested I find some outside help or support.

I can tell you that no one has offered to pitch in so I can take a day or two or ten off.
I can tell you that my back has never hurt so bad.
I can tell you that I’m in worse shape than ever and I’d devoted my life to being healthy, fit and capable.
I can tell you that just when I think I can get a break to nurture me, I end up taking more time to care for the patient. Or lately, something else comes up.

I know this: It’s my job to take care of me first. I didn’t get a lot of pleasure from stopping to get a little tea after another stupid fight in a parking lot. But it did calm me down. It did put things in perspective. Why? I heard him say: I can’t talk to you, after he rushed across the parking lot instead of helping me put his wheelchair together. He’d accidentally nearly fallen and it was evidently my fault he didn’t see the wheelchair frame. I apologized, but he was gone. Emotionally gone. So I sat down. He came back to put the thing together. As soon as he gets settled in his chair, he takes off. He called out “I’ll see you in the store” and took off leaving me to close up the car.

I walked around the grocery store looking for him. I stopped for a tea, and walked around again. Decided the hell with it. I paid for my tea and went back to the car, opened it up and waited. He comes back and tells me to go sit down. I offered to help, but he said nothing. I once again endured a deathly silence as he drove us home. I gave him plenty of time and space to say whatever he wanted. Silence. Get home, he goes to his office and shuts the door. Second time this week.

I didn’t cause this, I can’t control it, and I can’t cure it. I can’t win for losing either. I can’t win at this job. There is no end to it, no break, no sanity. It’s all about him. I didn’t want this for my life. My life? My passions? My interests?
Right! Somehow, no matter what I think I want to do, it always rolls right back to caregiving.

And he doesn’t need me all the time. Just when he does. He can handle most “activities of daily living” but he can’t handle actually doing anything for himself until he gets mad at me for not loving hefting heavy stuff at weird angles.

Yeah, Don’t Let Your Daughters Grow UP to Be Caregivers. Nursing would be better. But if they do that, maybe they should just be Doctor’s. There is such a thing as Helping Professions that are fulfilling on many levels. If your girls are of a caring nurturing nature, Please Please Please push them to find a valued profession that pays really well so they can hire someone else to do the daily caregiving of someone they love. Then the love stays in the home, the mutual caring and respect is intact, and the marriage remains a marriage.

Can You Feel It?

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There has been a lot of noise of late about peoples opinions on various illnesses and diseases.

I’m sad about this whole thing. I can easily see how Robin Williams could succumb to the darkness. People spew all kinds of stuff about happy happy joy joy — but everyone of us is human. And as humans, it is every bit as normal to be sad as it is to be happy. IN TRUTH, you can’t feel real joy if you can’t feel real sadness.

I’m disgusted by the cold hearted comments about depression, chronic illness, and long term illness. I’m angered by a man whom, when I responded kindly to his claims that these diseases are not a tragedy but a choice, blasted me with a hateful comment that started by saying “Bullshit – you don’t know what you are talking about” — My heart was in the right place, but he can’t feel it. The ignorant have loud voices and hostile behavior only to cover their ignorance and naiveté.

What’s got me in a tailspin this week is not that this person matters to me personally, but that he might represent the majority. I fear it’s true. I know how cold people can be. It’s the kind of cold and calloused attitude that literally stops people from reaching out. It’s stopped me! 

It’s reminded me that I grew up believing I should suffer in silence, find a way to pull myself up and just buck up and take it like the dynamic and strong woman I am supposed to be. I didn’t know how to be any different until I finally learned.  It took years to let people in. I feel sadness for those who never open to the true joys of love and intimacy.

I do know what I’m talking about. I am the caregiver. I know what I am living with, watching, helping…. I see the demise of a wonderful man.
I know the financial and emotional devastation of long term illness — an illness that has no end, no treatment, no real cure that is known or common. Some days it’s like a slow walking death.

Often, we think losing an arm or a leg would be easier. Paralyzation would surely have it’s own problems, but there is plenty of help. Often we think Cancer would be better — there’s a better chance of recovery, a better known treatment, and a better quality of life. YES — I am serious!  Cancer ? Yeah there is a lot of help for the patient and the family, during and after treatment. And there is a lot more community support. Let’s face it – there is big money in fundraising for causes — and cancer is a big one.

But I know most people won’t get that, won’t want to understand, and surely won’t believe – because it’s scary as all hell and there is nothing that your words will do to fix it.

I know well the damage that stupid words cause. I know too well the pain uncaring idiots inflict when they play their ego strings hoping to make others hurt because they too hurt. I know that to many, invisible illnesses don’t count in the world of sickness and devastation.

I don’t want to let that one ignorant man ruin me — but it hurts. It shocks.  And what I need to know is that there are more good people out there who truly have hearts – who truly care – who have it in them to reach out to us. Because dammit – in the throes of this madness, it is just hard to reach out to others – especially when there are people like Gary Cotton, Rush Limbaugh, and a few other cruel trolls running around.

Indeed, what I need to know is that love is more powerful than hate, that acceptance is stronger than rejection, that people do care and are able to extend a little love instead of waiting for those hurting to ask for it.

Myalgic Encephalomyelitis — Try saying that once!

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ALL JOKING ASIDE that’s a mouthful.

What is it? It’s a subset of Chronic Fatigue Syndrome — which is debilitating enough all on it’s own. I’ve known others who had this. They never found a cure.  What amazes me is this was a vibrant, type A, driven man who went to all lengths to help others, support employers, be a good friend, and contribute to his community.  And now? He can barely keep a commitment.  Now that we have a diagnosis, we know more and it’s frightening. But knowledge is power.

One great thing is I was on the right track with all the dietary and lifestyle changes I was recommending.  As we sat in the office of the Director of Integrative Medicine at the Mayo in Scottsdale, I heard advise that I was already promoting. The new piece was a graded exercise and extreme guarding of energy. My health coach training was coming in handy. (Institute of Integrative Nutrition graduate 2012 and Immersion grad 2013 — I’m not just blowing smoke. I studied with of the best in their fields)

I’ve found a few videos describing this. This nine minute video on Utube by SleepyDust tells a beautiful, if not slow story. (If it was my slide deck, I’d speed up the transition, but it’s not. Its perhaps as slow as a mind on ME/CFS.)

I want people to understand. This invisible illness is so far beyond ‘tired, exhausted, and nauseated” and it’s not even like flu like symptoms for 8 years running’ — it’s as if a normal day with a cup of coffee suddenly is drained into a cesspool of complicated symptoms that flatten a once vibrant man. Yeah, flatten. Force him back to bed.

Somedays I wonder how he can deal with this day in and day out. Not the daily living, but the mental anguish of never getting an answer. My beloved husband has 22 years sobriety with not one relapse into the darkness of alcoholism. He often tells me this illness is the hardest thing he has ever dealt with. It’s unimaginable to have countless doctors offer a quizzical look, say “hmmmm, interesting”, that’s weird. The doctor’s order routine and not so routine tests, but ultimately nearly everyone has waved his white coat and said: “Geez — this is really weird, and I’m sorry I have no idea.”

When one primary doc of 5 years finally told me he was out of ideas, I begged him to research, talk to colleagues, and keep looking. He told me he did, but was sorry he had no idea. I asked this nice man if he was subtly trying to tell me it was psychological.

He replied: I AM NOT SAYING THAT AT ALL! Clearly, something is wrong but we just don’t know what else to try”  Their failure to diagnose meant that even though they admitted he was sick, without a name there was no disability insurance.  Or that’s what we were told.

Yesterday, someone said: “Hmm….It’s all in your head, man.” Had I been there when he said it, I would have erupted.  My guy is the ever polite man who wants to keep the peace.  He didn’t even tell me until hours later.

Friends don’t know what to say or do. Some give up.
Family? This has nearly destroyed my already fragmented family (for now).

Most don’t realize how precious a little text or email is to someone who has become so isolated. But please, we want your love, your kindness, but we aren’t interested in your judgements.

When you find something you love, you need to share it.

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They say in 12 step rooms that in order to keep it, you have to give it away. When it comes to matters of the spirit, matters of the healing soul, I find this to be true.
So here — I wish to keep this, so I am sharing the meditations I am loving most.

I’m hopeful that anyone challenged with life threatening, life sucking illnesses can find their path to healthy whole living once again. I believe that you can. I believe that you are powerful, mindful, and able. It may not be in your desired time, but you will find your way. You may move through this time to find that there is a gift within this madness – a treasure to cling to that comes from within.

I know I have. I know that my treasures are not of physical form. I know I’ve come through to be a guide to others. I’m not perfect. In fact, I’m far from it. But I also know that through my trevails came a different kind of love and a different kind of strength.

Some have said it’s bs – some have said it’s just soft stuff. Hell, I’ve been turned away from jobs because I was told “you are too soft” and all I could do was laugh. Yeah, right! Soft? Those who don’t see the strength behind compassion, kindness, and empathy are perhaps weak themselves. Those who don’t see the strength are then threatened when the bulldog comes out. I’ve often wondered about this,for those who wish for us to roll over to their demands get awfully hostile when we refuse. You can’t make this stuff up. Somehow, when chronic illness threatens to destroy a life, everyone involved changes. Things come into perspective.

It takes great strength to remain loving, hopeful, and kind when slammed into the reality that somethings are just out of our control. Only when the strong crumble into a ball of tears, do they find the true strength. That – my friends – is you.

The bravado? The Tough Act? The hard nosed, bullish demanding ways of some? That’s the B.S.

Don’t be afraid to be You.
Dare to Be YOU. In all your soft, loving, kind, and brave ways — Be YOU.

And then you know.

Cycling Head Games

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It’s that time again. The fight for the yellow jersey is on!

Tour de France is here.

And with it comes an extra motivation that hits all cyclists: recreation riders, triathletes, endurance engines, commuters, home town racers, and semi pro’s to boot.

How can we not get excited. It’s mid stream in the warmer, drier months. Especially here in Seattle where the winter rains make it a bit more interesting to ride skinny tires. And many folks just consider winter an off season. Come July 5, summer is on, it’s hot, people are in better shape, and they once again are loving their bikes. I know it’s true. It happens to my husband and I every year. We watch the opening day. It’s fun. We tap in to the world of cycling where we see individuals compete on teams.

The views are gorgeous.

The crowds are fun.

The commentary is a combination of education, color, and hope.

The wins and the losses touch us deeply, as if we are watching friends.

Mind / Body Kinesthetic Motivation

Every year, as we stare at those guys in colorful kits spinning hard across fascinating terrain, our leg muscles literally twitch with motivation. Their cadence becomes our mental map of what our legs should do. It’s a mind body thing, similar to the Kinesthetics programs sold that teach a sport via a video. They use a technique that trains the mind to activate the muscles.  What I mean is simple. The mind watches so closely that the body is tricked into thinking it is doing what it sees.  It’s part Inner Game of Tennis, Kinesthetic Learning, and part Psycho Cybernetics.  (Ref: ideas and books that I grew up with)

The Kinesthetic Ski Instruction Videos are long off the market, but check out this awesome reference guide on the Mental Games of Sports Performance.

But it’s just a bike race. Or is it?

Oh heck no. It’s not just a bike race. It’s an opportunity for the viewer to learn, get excited about the industry, learn what new items are on the market, find out about great products, fun escapes, and …. ok, all of that. But its’ also the best marketing machine for cycling for the entire year.

How do I know? Because each year, as I watch, I also get emails. Emails from favorite manufacturers. Facebook posts offering a chance to win. Bike companies offering great discounts. And favorite cycling stores like Competitive Cycle, offering a deal a day. Like this one from a favorite vendor: Competitive Cycle

It’s brilliant. Everyone wins. The Tour de France Sale: Daily Deals for All 21 Stages

It’s not just the Tour! It’s mid summer special season and if the stores aren’t touting Tour deals, they are touting Mid Summer Seasonal specials. It’s time for them to gear up for fall, so they need to inspire us to get into the store and help them clear out inventory. And if you are like me, I’d rather be riding that shopping. I tend to put off purchases until I really need stuff. A simple trip to a store can be an hour or two lost riding time. It’s not a bad thing, it’s just a time suck.  And my solution: Buy Online when I can, when it makes sense, when I trust the vendor.

Companies like Competitive Cycle make life so much easier. They are a known entity. They offer not only the best, but a nice array. Sure they cater to the elite, but aren’t we all a little elite?  I trust these guys. I can call them and ask specific questions. I can get honest answers. Returns are easy too.
Then there is the stand by Recreational Equipment Coop, Inc.  REI not only has a great Mega Sale or Summer Sale, but you can buy online, and return in store if it doesn’t work.

I have my favorite local brick and mortar stores, but sometimes it doesn’t work. Some local guys that only carry the elite and cater to the upper echelon. They lose me. I don’t really need the top of the line cycling stuff. Do you? If you aren’t a racer, aren’t in the industry, and really just want a bit of comfort for a reasonable price –you don’t want to spend $300 on a pair of tights when the $150 tights do the job.  Unless the guy at the shop convinces you that those $300 knickers are the absolute most comfortable ever and you just can’t live without them.  Me? I buy the best that works for me. And I bet you do too. If everything in a store like Competitive Cycle makes sense, that’s where you shop.

Every year, on the 5th of July, we start seeing it. More yellow. More polka dots. More Strava reports. More fun. It’s summer! It’s time for the Tour de France. Let’s RIDE!

And don’t forget — check out the daily deals at Competitive Cycle for the next 21 days. The Tour de France Sale: Daily Deals for All 21 Stages

Boring Breakfasts? Not any more!!!

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Zucchini Salad rocks your day

Give yourself a happy kickstart with this crunchy salad.

Welcome the Bad Ass Breakfast Salad!

Ok, so years ago I was told to cut out eggs and wheat due to allergies. Not the gluten sensitivity stuff that is popular today, but a real blood test indicating allergy to specific foods. Complicate this with an already known sensitivity to dairy, and you have:  What can I eat for breakfast that’s good, wakes me up, sustains through the morning, and makes me happy?  YIKES It drove me nuts. At first I just ate whatever we had leftover from dinner. But hey, savory chicken or spicy lamb chops do NOT cut it for breakfast. I don’t like tofu and it’s not filling. I have a slight sensitivity to beans….what the heck?   Oatmeal gets boring if you eat it every day, and there were literally restaurants that didn’t even have oatmeal. Thankfully, there are solutions. You have to open your mind. You have to decide its possible. Like I said: Welcome the Bad Ass Breakfast Salad!

What to put in it?

  • Seasonal Vegetables. Crunchy and raw. Variety of colors. Textures.
  • Fresh minced mint. It grows like the weed it originally was. Easy to grow, bountiful harvest and oh so tasty a secret ingredient.
  • Seasonal Fruits
  • Cooked whole grains if you can eat them: Quinoa, Brown rice, Brown Rice Mix, Wild Rice
  • Black Garlic
  • Black Sesame seed
  • Soft or almost hard boiled egg
  • Bean Sprouts
  • Other Sprouts
  • Lettuces
  • Kales

The list goes on and on and on

How to Dress it? Think Simple

  • Lemon Juice and Olive Oil
  • Home Made Vinagrette with garlic and dry mustard
  • Walnut Oil and Balsamic
  • Walnut Oil and Blood Orange Vinegar
  • Raspberry Vinegar and Black Walnut Oil
Breakfast Salads: Happy Kick Off to a Great Day

Bad Ass Zucchini Salad Rocks it for Breakfast

 

What’s that?  You want my recipe?

Sure thing. But first, please consider subscribing to my blog so you get the updates.  There’s a sign in on the upper right. I promise. No spam.

Now, Here’s that recipe:

Zucchini Spiral Breakfast Salad

  • 1 Zucchini – using mandolin, grater, or spiral cutter, cut the vegetable into strips
  • 1 carrot – grated, spiraled, or julienned.
  • 1 cup fresh bean sprouts Fresh Mint, chopped fine (I used 3 sprigs, cut the leaves away from the stem, then chopped)
  • 1/2 avocado, cut into cubes – best if still hard but ripe. Mushy doesn’t work as well.
  • Dressing:
  • Simple!!!
  • Use the juice of one lemon and add a drizzle of olive oil.
  • Toss and serve.

OPTIONAL Add ons

  • 1/2 cup edamame or garbanzo beans (optional)
  • 1  – 5 minute boiled egg (not quite hard)
  • 3 – 4 Black Garlic Cloves cut into smallish pieces bigger than chopped, smaller than chunks. (how’s that for scientific description? – You’ll figure it out. The bigger challenge is finding this delicacy.
  • Walnuts
  • Spiced Almonds
  • Roasted Garbanzos

Happy Tummy = Happy Day

I kid you not! I saw a version of this recipe but never thought about eating it for breakfast until today. I saw someone posted a salad photo and I immediately knew – today was a salad breakfast day. As I made it, I felt the creativity meter kick on high. I felt my smile come on strong as I knew this was a killer recipe.  I felt the juices flow as I thought about adding that egg. And out came my trusty Canon camera to make sure I captured this in all it’s glory.  I hope you like it. Feel free to leave comments and share your adaptations. I’d love to know that I’m not the only salad crazy, breakfast confused lady out there.