The Pink Ribbon…

I am re-posting this today as it has now been 23 years since I lost my grandmother to cancer.

The Burned Hand

The background on this short essay is that I entered a contest some years back.  It was not your ordinary kind of contest…it was for cancer research.  I feel like publishing it here today as I think of the many beautiful people in my life struggling to paste smiles on faces that are hiding struggles we can’t begin to comprehend.  I love you friends.

The Pink Ribbon

Everywhere you look nowadays you see the signs of women surviving cancer.  It is a beautiful thing.  Nineteen years ago, my grandmother was fighting a hard battle against her own cancer.  We didn’t have the same kind of medicine or technology that we do now.  She would take herself to the cancer treatment center, get chemotherapy, and stop by Krispy Kreme doughnuts on the way home.  She would enter with a smile on her face.  She asked me about my studies and my…

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Motivational Monday…

So, after a full weekend in Yoga Teacher Training, Monday is usually “catch-up” day.  I find myself spending too much time trying to reciprocate on Twitter, FB, Instagram, Pinterest or wherever I feel like I have not kept up.  Then I realized that I had neglected connections on here.  The actual blog.  This is where my heart was/has been/is.  The connection that I make to my readers is actually the thing I value the most.  If you go way back to my first posts, it’s about establishing a connection to you through my life with invisible diseases.

It did morph into a holistic type of connection…mind, body, social fan page, because I felt like we needed a variety of ways to stay in touch; however, please know that if you comment here, like here, share here, this is where I feel it the most.  My blog to me, is like ripping parts of my soul out and pressing it onto paper for you to read.  At first, it hurt.  It left me raw and exposed to the world.  You know I have issues.  You know I’m not perfect.  You know I’m a hot mess at times.  And…it’s okay.  Nothing fell apart.  I didn’t die from this experience.  In fact, I think it made me stronger. 

So my friends, my message today is simple.  Don’t be afraid to make real connections.  Some will not understand.  And that’s okay.  Everyone is brought into your life for a reason.  They all have lessons to teach us, and some might sting.  Some might walk away from your life because the truth is just too big for them to understand.  The only way to keep on living with that truth, is to remember that being you is the real lesson.  Being real.  The connections you make out of that are far more substantial.  I’d like to end with this piece shared by one of my readers, and hopefully you can read the whole poem.  It’s still amazing after all this time.  If poem, by Rudyard Kipling.  Thank you for the reminder friend.

Stronger Me

Tips for living with pain…

Oh great.  Here is yet another blog article trying to tell me how to live with pain.  What does this writer know?  This writer lives with 6 invisible diseases…and all of them have caused pain.  Hereditary Hemochromatosis (iron overload), Porphyria Cutanea Tarda (sensitivity to light, skin blisters), Hashimoto’s Thyroid (autoimmune…caused extreme stomach issues), Epstein-Barr Virus (felt entire vertebral column flare-up), Depression from pain, and Fribromyalgia (when anyone touched my skin, it felt like a slap).

Over the last three years, the pain continued to get worse.  I opted not to be on the pharmaceutical drugs due to the fact that HH is a genetic condition and no doctor could tell me for sure if the drugs would make my liver worse.  So pain it was.  But I wasn’t going to stop there.  I continued my search for things to help me cope that were going to work with my body naturally.  What did I find?

  1. Turmeric milk.  Turmeric has been used in India for thousands of years for its anti-inflammatory properties…due to the active compound curcumin.
  2. Relief.  Building on that, I take this product because it has ingredients such as glucosamine and chondroitin, but even more than that it also includes turmeric root extract, as well as yucca root, which has long been used for osteoarthritis as well as inflammation of the intestine.  Ah-ha.  Hmm.  Remember my stomach pain before?  Better within weeks of getting on this.
  3. Restorative yoga.  Yoga has been shown to decrease the stress hormone cortisol.  Do you think I might have been stressed when I moved if my whole body felt like it was on fire?  Yes.  Just a little.  The difference in restorative though, is that you get to use comfy bolsters, blocks and blankets.  So we made little nests, and sat in that pose for 5-15 minutes depending on what it was.  I had a hard time at first, but learned to let go of my expectations of what my body used to be able to do.  The poses became second nature.
  4. Vinyasa yoga for back pain.  I graduated to Vinyasa…honestly, only because a friend pulled me in the direction my mind was afraid to go.  When she suggested restorative, I gave it a try.  When she said that I could do Vinyasa and possibly teach one day, my mind shut her down due to the pain.  “She has no idea how much moving hurts.”  Said the mind…but the heart wanted to get better.  Thankfully, it’s pretty strong, and said “Let’s do this thing!!!”  And so I did.  Almost 200 hours later…the girl on fire.  Literally.
  5. Meditation-like thoughts.  When I felt myself go into the dark place of pain, I would literally stop and say things to myself like “I am breathing in.  I am breathing out.”  I didn’t come up with this on my own.  I read part of a Thich Nhat Hanh’s You are Here, except at the time, I didn’t want to be there.  ha.  So I never finished it.  But it did teach me to focus my breathing.
  6. Friends checking in on you.  This part became difficult.  Not many people were in this category.  When you are in pain, people slip away.  They do.  It’s not their fault, but it is in the human nature to be uncomfortable when you don’t know what to do.  Most don’t climb down in the hole with you.  Watch this short video to get the full meaning of “The Power of Empathy”.  Rarely can a response make something better, says Dr. Brown, what makes something better is a connection.

So my friends, I leave you with my connection to you.  I am in the hole with you.  I have climbed down there.  I will hug you.  I will give you that love and connection to your pain, but the next step is on you.

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Motivational Monday…I’m back!

Here is what I am pondering today:

People will let you down.  People will tell you things and never follow through.  People will anger you.  People will disappoint you.  People will be human.  That’s right.  Human.  It hurts.  I know, but learn to love them anyway.  Because maybe, just maybe, you’ve let someone down.  You’ve told somebody something and didn’t quite get around to doing what you said.  You’ve angered someone.  You’ve disappointed someone.  I know, its shocking, but at some point in your life, you have done those things because you aren’t perfect either.

So when it happens to you, take three deep calming breaths.  Pull yourself back from whatever emotion is running through your body and focus on something nice that person has done lately (I know you can find something if you try).  Move beyond the emotion that threatened to overpower reason.  Pull back just a little and look at the whole picture.  Maybe they didn’t tell you their husband just lost his job…so they appear angry at you, but that’s because you were there at the time.  Maybe they ask you a question, and no matter what is asked, you feel like it’s a personal attack.  Why?  Is it because you feel competitive around them or are you usually thinking something negative about them already?

Life is hard…but it’s harder when we constantly look for the bad.  When we suspect enemies are hiding behind every face.  What if, just for a moment, we embraced the human side of our acquaintances and only held ourselves accountable for our emotions and reactions.  Hmmm.  It’s really hard to do.  I know it is, because it’s something I am constantly working on.

Lifting_up

War on me…

#TBT blog post. Word.

The Burned Hand

I suspect that if I were to take the posts about my food issues and put them together in a book, it would be helpful to many people.  I will briefly try to explain what has happened to my body as best I understand it.  When I was born, I was born with the C282y gene that the Irish people needed.  It not being the potato famine and all that, it continues to function in the way it would have by holding onto iron.  Basically, it is thought that this protein functions to regulate iron absorption, and mine is “broken” so to speak. Luckily, the porphyria cutanea tarda kicked in and gave me blisters all over and turned my urine dark.  Warning!  Warning!  Anyway, you can see other posts about all that.  Just use the tag cloud and click on hard to read words.  ha.

So we have a…

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My break up with sugar and gluten…

An oldie, but goodie!! Read more autoimmune friends.

The Burned Hand

FYI…I originally wrote this for a magazine, well actually an e-zine that has published me before, but I am not sure if they actually published this piece, and quite frankly, I like it.  Plus, sigh, I write for free anyway.  So here it is:

A little over three years ago, I began to notice food was not my friend. It was a difficult concept and one I ignored for a long time in hopes that my instincts were wrong. Sadly, they were not. I started to have stomach pains, headaches, irritable bowel symptoms and more. Never in my life had I bloated from eating bread…until now. I was beginning to see a pattern so I scheduled an appointment with a gastroenterologist. The only thing he could really say was my stomach appeared to be having problems digesting food…and that I was NOT celiac. Okay, but that didn’t answer my questions…

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Motivational Monday…

Hello there, it’s me.  Your friendly guide to getting the most out of your Monday.  Today I am going to share a little video a friend of mine put together.  Be warned…I don’t know what I am doing.  But at least maybe it appears I did…not sure as I had the camera in the wrong place, and it was using my phone, etc.  Okay, no more stalling.

Aimee’s interview seemed to go well.  But as I watched it, I judged myself.  Ack, do I sound dumb?  Why does my face look puffy?  It does look puffy.  Am I puffy today?  Wait, none of my thoughts are serving me right now and this was not the point.  I discovered I don’t like being on video…which is why I decided to actually do this video interview.  I know it’s crazy, but I do things I don’t like to get them over with. 

To give you a point of reference, when I was 14 years old, I stepped on a snake…in Florida.  I tried to be calm, but it wrapped around my ankle and bit me.  Number 1, I was not calm.  Number 2, I hate snakes.  Number 3, I could swear it had a diamond-shaped head.  And then I screamed.  Long story, I spent 4 hours in the hospital having tests.  I was at a hotel with an inclosed, but open pool area when this happened.  When I became a volunteer years later at my favorite Living Museum, guess what I did?  GUESS!!  It was amazingly scary.  I had to reach into a pillowcase and pull out a………….SNAKE.  But it was a black rat snake.  Yes, it was the scariest thing perhaps in the universe to me.  I learned all about snakes though.  And how the scales are actually like fingernail material and blah, blah, blah.  But I just wanted to NOT be afraid.  I even held a corn snake.  So now, when I take my daughters to the museum, and she looks at a tiny green snake on a limb and says “Mom isn’t he the cutest?”  I say “Sure baby.  But we are not getting a snake.  Not even a little one.” 

So to change your thoughts, you have to embrace the pain maybe for a minute, then turn away from that by changing the pattern of your thoughts.  I decided I didn’t want to be deathly afraid of stupid snakes because there are LOTS around Virginia.  I wanted to be mildly interested in them as another living creature, but you know, we don’t have to be like BFFs or anything.  So change snakes to pain and you have me taking yoga teacher training even though I was afraid I couldn’t keep up.  You have me challenging my mind to change my thoughts from focusing on pain all the time, to moments where I am NOT in pain.  Aha.  To moments where I am living in pain, but in those moments, I can still create my own happiness.  I can still focus on what is working and less and less on what is NOT working.  I can focus on helping lead others out of their pain and darkness.  I can reach my hand right in that pillowcase and take life out and say “Aha!!!  I got you.  You aren’t as scary as I thought.  Maybe you’ll bite me, but not this time.  Not this time.” 

And that my friends, is how to change your thoughts.

Suffering

Netiquette for sharing on Social Media…

So, for what seems to be the thousandth time, I have just explained again on social media how using the share button is actually different from stealing someone’s work.  I have many artist friends.  Many.  We create, we craft, we spend countless hours thinking of how a certain thing looks and how our audience might react to it.  But more importantly, we do it for ourselves.  Not to make millions of dollars, but because we feel this driving need to express ourselves.  If what we do resonates with you, then by all means share our work.  Please.

You can do that in any number of ways.  Copy the link to our site and message your friend.  Share and re-tweet us on Twitter.  Find us on Instagram and click the little heart.  Re-pin us on Pinterest.  Follow a blog.  Use the sharing tools on the blog.  Do you know why these are acceptable?  Because they link back to our original work.  But for whatever reason, when you are on Facebook, you might think downloading our work is acceptable.  Even though that awesome little share button is right there…it is made to circulate things you like.

Here is why downloading is not okay:  As stated basically by all the legal verbiage you can find on FB, When an image is published on the internet, the owner of that image immediately owns copyright.   If you doubt me, here is a reference link and you need to read Is it legal to download works from peer-to-peer networks and IF NOT what is the PENALTY for doing so?

So now you see why my friends are serious about the warnings they give.  “If you use a copyrighted work without authorization, the owner may be entitled to bring an infringement action against you.”  If you are a fan of many of the popular quote photo pages and you absolutely LOVE a particular quote, ask them if it’s on Pinterest so you can re-pin it.  If it’s not, maybe they will make it available for you.  I know I would if you said, I love this quote so much I want to marry it.  Or whatever you normally say.  I taught preschool (reminder).  I don’t adult correctly.

Moving on, but when you leave this long-winded comment on my page after I have nicely explained why the 50 photos you just downloaded into your albums are not actually yours and that’s like me taking all the photos of you, your kids and putting them in my albums and saying they are mine, and you leave me this negative comment, but you threw a Namaste after it, well then, my gosh, that’s ok.  Because you ended with “respect”.  How about respect me enough to begin with and share correctly.  That speaks volumes to me more than explaining away your actions by trying to cast blame.  And for the record, I meditate and am completing a 200-hour Vinyasa yoga teacher certification, but if I broke into your house and stole your things and you caught me, but said Namaste to you as I was leaving, I hope it would be okay with you.

Namaste

Motivational Monday…for the UNbroken

Hey friends…you know how last week on the Facebook fan page for my blog, I asked you a question?  I asked you to tell me what kind of “invisible disease” you had.  Many times, we feel so alone with these diseases, because they are in fact, not visible to people looking in at our lives.  But this statistic came from the link I posted: 96% of people with chronic medical conditions live with an illness that is invisible. 

I don’t really think we are alone.  So let’s say you didn’t get your disability and you have 5, maybe 6 illnesses on that list.  Guess what?  It happens.  I decided it meant something different.  I decided it meant that I was supposed to find a flexible job working from home and helping others.  Don’t be discouraged.  You have a few options.  You can continue the fight without a lawyer.  I have been told that’s why I never got anywhere.  You can get a lawyer.  Or you can move on.  Moving on is not giving up.  I just want to give you permission in case you needed to hear that.  I know all the excuses in your head.  I know all the what ifs.  But do not stay in that place of despair.  Make a plan.  Work on it.  Move on.

So now I am in yoga teacher training, and it’s hard.  Very, very hard emotionally and physically.  I doubt my path at times.  I do.  But as my friend said yesterday, okay really paraphrasing, if we didn’t have emotions or feelings we’d be like Data from Star Trek.  He was an android who was unable to feel emotion or understand certain human responses.  We don’t want to live like that.  So acknowledge the feelings you are having, and work the plan.  Whatever the plan is.  If you don’t have plan, write something down.  Just a few things.  It can be as simple as get out of bed, and get dressed.  Get to the store today.  Fibro friends, this is an important plan.  You know this.  Get out of your pajamas…says the blogger still in pajamas.  But you know what I’m talking about!!!  You do.

Next on your list, make a new friend.  Okay, this one is hard.  Why is this hard?  It is hard for people who feel alone, because opening ourselves up and getting vulnerable with new people is like going to a new doctor for us.  We hate having to start at the beginning and tell our story.  I know this.  You know this.  Stop ignoring this one.  So here’s how you can go about doing this.  Re-evaluate who is in your life right now.  Who checks in on you…who checked out on you.  Those people who checked out of your life during your hardest times, they have left you space for new people.  I know it sucks, believe me I do.  But it’s time to be honest.  Those people didn’t understand anyway.

So start a new practice.  Get your list out.  What did you like to do before all the bumps?  For me, I already liked yoga, so I looked into restorative, which was low-key.  I researched other types of exercises for fibromyalgia, and decided I didn’t feel like going to water aerobics, but if you like that, put that down.  if you liked gardening put it down.  Don’t think about the pain, I know you automatically went to “I can’t get down there and bend.” Stop.  So here’s a neat idea, look up community free classes or workshops in your area.  You can also container garden and not have to bend.  See how I did that?  Put it at eye level.  Flower arranging?  Do it.  Whatever it is that old you did, write it down.

So guess what’s going to happen during this process of thinking about other things that you now have room for in your life…you are going to make new friends.  You are going to feel better, and you are going to feel less alone.  Anytime you have a negative thought, push it away and back to the things you are doing that are positive.  That are a step in the right direction.  So when you get that letter in the mail from social security…don’t be afraid to open it.  Make a plan.

broken

Motivational Monday…for fibro

One side of my body is wearing a tightly laced corset today.  During my morning yoga, a spasm went from my left shoulder to this spot in my back that is as tight as a rubber band pulled to snapping point.  In my head, I tried desperately to push the thoughts of discomfort away as it was the first part of my yoga practice this morning, but little wisps of thought already went past my carefully laid defenses.  I focused intently on the voice of my instructor and pushed past the spot.  Listening to her speak, and breathing.  Always breathing and focusing on the breath.  I have become so focused on the breath that it does allow me to get through my practice even when pain sets in.

You see, I am trying to prove a ridiculous point…to myself.  I am not on any of the drugs that doctors prescribe for fibromyalgia due to my underlying genetic disease hemochromatosis.  One year ago in February, a rheumatologist told me he would be nervous to put me on medicine that could perhaps harm my liver.  That was enough for me to decide to stay the course of all-natural supplements and work through immense pain using a series of steps I researched.  You are welcome to read the tab on the top of this blog called Vitalize You.  Those are some of the steps I took.  I also enlisted in the help of a full functional medicine approach, and used Applied Kinesiology, which I have touched on here.

This last step is more intense yoga than I thought was possible for me.  You can sit there and come up with one million and one reasons why it won’t work.  But if you can only come up with one reason, and one reason only, of why it will work, then take the chance.  That one reason is this…what have you got to lose?  No seriously.  I’ll be in pain you say.  Ummm, hello.  You already are.  I can’t move much right now.  Of course you can’t…because you don’t.  It will get worse..before it will get better.  Yes, but at least it will get better.  And trust me on this, you have to believe it will.

So today, in the car home from yoga, I thought, well that could have gone better for my body.  But so what…I went.  I showed up.  I was there.  I almost cried in the car and then I said to my head, stop this.  Think of where you were a year ago.  No really.  Stop and think.  You moved like an old woman, you were in immense pain, and you saw no end to that pain…ever.  Today, you were in pain in a few areas, true, but you were working your muscles.  You were doing things and you felt good afterward…just not as good as you hoped.  The knot didn’t go away like you thought, but it is loosening.  Do. Not. Give. Up.

Let go