The yo-yo mood…

So it just takes one thing…just one for me to start my yo-yo mood.  The other day, I was doing whatever random things I do on the computer.  Mostly making quotes for a few pages I run, and a friend sent me this article in a message called It’s Not Fibromyalgia.  I read her message and was surprised that she too suffered…but when I started reading this post, my head went to the place it goes to when people write about their experiences.  It kind of goes like this when people talk about how bad it is living with pain…I hear you sister.  I understand this.  It sucks, but damn this is depressing to read in someone’s voice other than my own.  Do I sound like this?  Crap. This is messed up.  Sigh.  More depressing things I have been through.  I could be her…she could be me.  Wait.  Wait a minute.  She just said something I need to hear.  Someone actually listened to her.  Hold on and back up to that part because the rest is the same as my life.  Except this part.  This part where she finds HOPE. 

So I get to the symptoms, you know the part where invisible diseases can’t be seen except for the fact that I have lots of those symptoms…and doctors don’t really know what to do…so I kind of stopped talking to them about what’s going on.  And I get to the part where she prayed she had this thing because it actually explains something.  Black mold.  Wow.  Who knew?  Well, obviously someone did, but not anyone else most of us have ever come across in our long line of 18 different specialists.  So I messaged my one advocate in this fight…Dr. Marion who I have written about.  And she says yes.  Yes we can do this test.

For those of you who might be new, I gave up on regular doctors after getting diagnosed with fibromyalgia by a man who was a nervous wreck and a top rheumatologist in the area.  He said he understood why I wouldn’t want to be on pharmaceuticals given the side effects of the “medicines” and the possibility of a liver compromise with hereditary hemochromatosis (see my tab at the top about that genetic disorder).  Not to mention the other possible complications with those “drugs”.  I decided to go all-natural using plant based phytotherapy (see my tab Vitalize You at the top).  So that brings me to where I am.  No doctors listen to my intuition.  None.  I know for a fact that something deep down has made so many things spin off…and it’s only a matter of time before we find the link.  So if this isn’t it…we keep going.  But it’s one more thing to cross off.  I will let you know what happens.

Difficult times

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Awww shucks y’all…

Breathe in.  Focus on your breath.  Breathe out.  Whooosh.  What am I doing?  Oh hi there.  Nothing.  People are trying to make me cry and stuff…but like that man in Cloudy with a Chance of Meatballs 2, I am holding it back.  Please tell me you clicked on that link.  It’s funny.  Shhh.  Kids movies are funny…plus I don’t see erm adult movies anymore.  Back to the point of this post.

I am counting the good days, the good things that happen, and the good people in my life.  I am ignoring the bad right now because it’s something I need to do for myself.  It is one of my coping mechanisms when I am having a hard time.  Somehow, God, the universe and good people know when I am having a hard time.  Ok, so I tell God things all the time, but it’s kind of like telling your teacher…maybe even tattling on yourself.  You can’t help but think God, are you listening to me?  Am I in time-out now?  Or maybe He’s like “Aimee, calm down.  I am trying to take of the other 1,000,000 people who need me right now.  Just chill.”  So here I am chilling.  Occasionally going God, pick me!  Pick me!  It’s my turn!!!  I am being patient.  Well, that’s when He sends in my friends.  My support system.  People who are there to help.

Knowing that I have a “life sentence” of dealing with the ups and downs of invisible diseases, well, I am not going to lie, I do have “woe is me” days and I hate those days.  So I work extra hard to focus on others on those days.  I built my fan page around picking up people like me.  So imagine my surprise when I woke up one morning, way after all you other nice people have gone to work, and found a note on my wall that I was one of 22 most inspirational pages for my friend Sheila.  Well, I was shocked.  Look for yourself…I am actually there.  Have a peek.  Really.  It’s still there.  I thought maybe it was going to go away like magic, but it’s still there!!  22 Most Inspiring Facebook Pages.   Ta-dahhhhhh.

A sense of “you must be doing something right” came over me.  Then this contest jumped up in my face here on Best Health Blogs 2014.  And I thought why not me too?  I got a later start than everyone else who knew about the contest, but it can’t hurt.  I technically need a mere 1000 votes to catch up, but it’s for $1,000 and I would definitely put that money to good use as I am paying off dachshund bills, backed up sink, and erm things that were ruined in my attic like my brand-new Christmas tree, but who’s counting?  I’m not.  Oh and that burning smell in my mini-van that I continue to pray to God will keep working…so we dump more oil in and keep on going (P.S.  it’s got some sort of oil leak…but it’s fine).  So these things I do not focus on.  I don’t.  I do that thing that children do when they can’t hear you…I cover my ears and go lalalalalala.   Ignore.  Can’t deal with you right now.

And guess what?  It works for me because I can focus on the good.  When I tell you the “bad” and you understand that someone out there gets it, not just kinda gets it, but really and truly could look you in the eye and say “I have been where you are, I might still be there, but it’s getting better day by day.”  And you realize that you are not always going to be wherever “there” is.  That it might be bad at this moment.  It might.  But stop, breathe in and out and find the good in your life.  It’s there.  Trust me sisters and brothers, it’s there.  Oh and note to self, God hasn’t stop listening.  He hears you.  He is making way right now for some amazing things to come into your life.  So put on your cape, and start focusing on the good.  You can do this.

empower cape time

Restorative Yoga…finding my place

I was afraid my body was not ready for this class.  In fact, after taking the beginner yoga class, I waited weeks before coming back in to give it another go.  You see, the ego whispers to me “That was too hard, you must give up now.”  It is coming from a place of pain.  Pain I have lived with for the last 5 years since developing the symptoms and ultimately the diagnosis of fibromyalgia.  But last night on my mat, as I held the pose for a little bit longer, my mind tried to scream at me again to register and focus on my pain.  I then shushed it, and focused on my breathing instead.  And guess what happened?  It worked.

Three weeks ago as I was getting ready to take the first class, an acquaintance called me, but I said I had to go get ready for yoga.  She asked if she could go; however, she is not known for her patience, so I explained this was not like traditional yoga.  She said she was fine with it…haha.  We arrived and were told to get bolsters, a blanket, a block and a belt.  She kept asking me questions about what we were going to do.  I did mention I had not taken this class before.  Throughout class, she fidgeted.  She whispered.  She twitched.  She complained under her breath.  I was NOT happy.  Yoga is MY place for peace.  If you invite yourself to come with me, you need to respect that this is already hard for me, and I like to relax.

At the end, oh the end, I was mortified.  Tea was served, and I dearly love hot tea.  As it was being passed out, fidgety gal loudly says WHAT IS IT?  I stared at her.  It’s tea.  Well, what kind??  I need to know.  No you don’t.  Be quiet and drink the tea before I lose my calm on you and go off all Scorpio style in this nice place.  She then got out her PHONE.  Yes, her phone, and proceeds to play on it.  NUMBER one rule of yoga is there are NO cell phones in yoga.  Everyone knows this.  Everyone.  Except her.

Unfortunately, I left this class more tense than I should have.  I allowed another person’s behavior and energy to seep into my space.  I don’t have time for that in my life.  I just don’t.  So I went blessedly alone the next week.  And again last night.  What I learned was that each week, Lauren works on a different part of the body in the poses.  If I had given up because of my mind, body, or embarrassment of the above, I would not have known that.  I am working hard on shifting my focus.  There are things we can’t control, but when you get to your mat, control what you can.  Slow down you mind, focus on the breath, drop the chatter in your head, and let the others melt away.  It is your journey and yours alone.  No one can do this for you.

I truly appreciate this class as it feels like it goes at your own pace.  Some of us use more bolsters, blankets, or props to get in the pose and get the best benefits.  It does not matter.  This is truly a class to teach you to slow down.  Namaste.

 

 

Heart

Transcendental Tuesday…

Practicing Trancendental Meditation is said to be a good way to relieve stress.  The TM technique involves the use of a sound or mantra and is practiced for 15–20 minutes twice per day.  For example, let’s say you are dealing with people who just don’t get “it”.  Whatever it is.  You can close your eyes while speaking to them and begin your meditation.  I had to do this today when speaking with someone who deals with medical things.  I had to explain that genetic conditions such as mine do not have magical “cures”…that basically that’s why the gene was inherited.  If it did have a cure, I think I’d know about it by now as I would love to stop having pints of my blood taken every 6 months.  So, in order to deal with this yet again, I had to go to my happy place.  My place where my mantra was “Don’t slap the stupid people. Ohmmmmm.  They can’t help it.  Ohmmmmmm.  They don’t know any better.  Ohmmmm.”  Repeat.

I have had to go to this place often in the last 17 years.  When I then had to call the next doctor’s office to schedule my phlebotomy, the nurse said they needed to do more blood work.  I said, no actually, you don’t.  I just had blood work done, and the doctor told me if I was experiencing problems to call back and make a phlebotomy appointment.  So, here I am experiencing “problems”, calling you to get things straight.  Well, this went on for a while because she insisted he said I had to have more blood work done before I could have my pint taken.  I calmly explained that it appeared I was breaking out in porphyria bumps and that most people with hereditary hemochromatosis don’t have the two fold warning system like I do to let them know it is time for the vampire visit.

By the time I was done with this, I had worked myself up again.  I called my husband and my mom to vent because it’s either that or throw things…or cry.  Which gets me absolutely no where.  Then I am reminded of other people who are worse off and I feel bad about getting upset, but it can’t be helped.  I thought back to my earlier conversation with a lady I just met.  Her daughter has one of my conditions, fibromyalgia, and can’t work, get out of bed some days or drive a car.  I am one of those people who really tries to think of other people when I feel bad.  I really do.  It makes me want to push harder to show these people that life can be lived.  There is hope.  There is a way out of this, and we just have to believe.  Sometimes, we are going to have to put up with the “stupid” things in our lives.  Whatever that is.  Irritants, things that challenge us.  Make us feel frustrated, mad, or ready to throw in the towel. Push past that to the other side.  You can do it.

Stupid

 

The enemy within…

When there is no enemy within, the enemy outside can do you no harm.  I want you to think about that for a moment.  It has taken me two days to process the death of Robin Williams for many reasons.  Being happy all the time takes a lot of work if your smile doesn’t quite reach your eyes.  I noticed that about him some time ago, but thought he had control of his demons.  I feel like we have failed him in some way.  But this isn’t about him entirely.  It’s about us.  All of us.

You ask your friend how they are doing, and they reply with their usual “I’m fine”, but you see they are not.  What do you do?  Dig deeper.  Make sure they are okay?  Reach out.  Have the discussion.  The one no one wants to admit they need to have with their friend.  Yes, have it.  Stop being scared.  The truth is, if you think you need to talk about it, you probably do.  The enemy is already within.  It’s time to draw it out into the light.

When you voice these fears, when you let people know, hey, sometimes, I’m not really okay.  I’m DEPRESSED.  There I said it.  I look okay on the outside, but at some point, when I wasn’t paying attention, after 16 years or so of fighting it back, it crept in.  I allowed it to come in.  I know when it happened.  I know why it happened.  I even know the day I realized what triggered it.  It is fueled by pain.  My pain.  But that doesn’t mean I can’t force it back.  I can and I will.

This is what we have to do for our friends.  We have to say, hey, I get this.  We have to be honest with ourselves and not pretend you don’t see it in their eyes.  Because you do.  You know you do.  I have had several VERY open conversations lately about triggers for people.  This lets your friends know you see it and acknowledge their fight.  Do they need back up?  Reinforcements??  The cavalry???  A FLAME THROWER to beat back the darkness????  A can of whoop ass perhaps?  Whatever you need, let me know.  We are in this together.

Sacrifice: the act of giving up something that you want to keep especially in order to get or do something else or to help someone.

If you do one thing, one thing, it’s listen to this.  Really take it in. 

You can do this.  Live this life.  You are phenomenal.  Find that reason to get back up.  Reach out.  It has everything to do with you.

Say yes to your life.  Yes to your dreams.  Yes to living the dream.  Leave no dream left behind.

 

enemy

A tribe…

Sometimes I have to mentally prepare myself for things.  As I mentioned, I was going back to yoga.  I looked up the benefits of yoga for fibromyalgia and decided the benefits far outweighed any residual pain I might feel.  I know that my body doesn’t cooperate like others, and I know I have to take it easy.

It felt good to pull out my old yoga pants…you know, the ones that most of us wear as “comfy” pants.  Well, I bought mine years ago for hot yoga, and haven’t worn them since November.  Anyway, I arrived a bit early to check out the scene.  I was apprehensive at first, because at my old studio, it was very quiet.  I walked in and saw some little tomatoes on the check-in desk.  The girl behind the counter said she didn’t know where they came from, but I could help myself.  Another woman arrived and took one and said hi to me.  She asked if I was new, and I said yes.  It felt welcoming.  No one said a word to me at the other place when they walked in.  It was almost like we couldn’t talk.

Anyway, I was given a little tour, told where things were, and I met the instructor.  It was a “HE” and not a she.  Side note…I looked him up before the class because I was almost thinking I couldn’t go to a “MAN” class.  hahaha.  Seriously.  I did.  I liked the look of him and what he said on the page, so off I went anyway.  How dumb is that?  It’s not.  It made perfect sense in my head.  Man class=harder to pretend that I can hold all the poses.  Not so.  Man class=no judgement.  Bingo!!

Where was I?  Oh the class.  The lady was already in there putting her mat down and a guy.  Wait a guy?  It’s ok.  We are not being judged.  There is no judgement.  Ohmmmm.  I started talking to the lady and somehow my business came up.  I mentioned I had fibromyalgia, did not open the bag of crazy to the other things, just the one, and said I was treating myself with all-natural supplements and heard yoga helped.  In reality, I am grateful my friend reached out to me.  She owns the studio and actually invited me to come in.  Anyway, the guy was there and somehow we brought him into our conversation.  It was nice.

When he mentioned he just had a cancerous tumor removed from his ummm brain, I was in shock.  We can ALL do the hard things as Glennon would say and I was glad he was there.  He looked a bit young, but I know cancer does NOT discriminate.  Old, young, whatever.  I felt less alone and more like I was definitely meant to be there.  I mentioned my research into all-natural supplements and he said his doctor didn’t say anything to him about that…yet.  I am adding the yet.  I mentioned my favorite thing, the greens, and at the end of the class three people asked me about it.

I am fortunate my friend reached out to me.  I felt connected to these people, her tribe, already.  She and her husband had a vision.  They called it Tribal Yoga.  A year has gone by since her husband passed in a small plane accident, and she is running a business, a full-time job, and being a mom to their beautiful baby boy.  She wears many hats just as we all do.  We have to make time for ourselves and come back to what’s important to us.  We have to be here for each other.

Tribe

 

Motivational Monday…maybe

My husband had his high school reunion…well, sort of his.  Apparently, they don’t mind if you were around that year and can make it since it was Heidelberg, Germany.  No, I did not get to go to Germany.  It really would be Motivational then, but they had it close to us in Washington D.C. so off we went after securing my parents, well mostly my mom, to watch the girls and 3 dachshunds.  He was really excited to see some old classmates, but knew that it would be difficult on me for many reasons.

There was not a gluten-free option clearly available, but after looking everything up, we thought one option would be safe.  After ordering it for a pretty penny on the “set” menu, the girl told me it really wasn’t gluten-free.  They had vegetarian, but it was over pasta.  Hmm.  Ok, she said she could deconstruct it for me.  So it arrived not looking as nice as everyone’s but it tasted yummy.  The problem is that no matter what, I was screwed.  There was nice crusty bread, I didn’t touch it.  Wine, I did touch it.  And a of course, no such thing as sugar-free dessert.  But again, I knew all this going in there.  I thought I had some will power, but sadly, I am mistaken.

So later that night we went to a popular pub.  The whole time I tried to act like nothing was wrong.  Even when the server couldn’t answer my questions.  I didn’t want anyone to make a “fuss” or put anyone out or generally go into this big long explanation of how this was going to KILL me this week.  Because, after all, if you don’t need an epi pen, I have found they are less likely to be cautious.  Sigh.  My personal experience is that they are not trained, but once in a while, you do meet someone who can answer your questions.  Again, this is MY experience.

What I need to realize after all of this is that I should not be the one to feel guilty, weird, freakish, or feel the need to EXPLAIN myself.  I should NOT.  I know that it is becoming more common to find suitable food when you have autoimmune issues.  I know for a fact I am not alone…even if I feel that way.  So I am going to tell you how I feel.  I feel like crap today.  Utterly and completely like I was beaten all over, and want to throw up.  It started yesterday in the car, with the warning sign of a headache.  It got worse.  I ache in all the places that fibromyalgia flares.  My stomach has been torn up since Saturday.  And it IS completely my fault.  It is my fault for many reasons, but mostly because I want to be the same as I used to be.  I want to eat food, any food I want.  I want to look the waitress in the eye and not bat an eyelash as I order brashly off the menu and when she asks, you want everything on it?  I want to say yes!  Yes, I want everything!  And a milkshake while you’re at it.  Throw in some extra sugar.

But the thing is, I can’t.  I have a list a mile long of what I am not supposed to eat.  So when I saw the “puddin”, I should have walked away.  It is NOT on the safe list.  I don’t care if it was smack yo momma good bread puddin with Bourbon glaze.  NOT SAFE.  Walk away.  I can basically eat meat, fresh veggies, rice, and drink water.  That’s not bad.  I can still make meals work.

Bottom line, do what YOU need to do for you.  Because if you compromise for fear of “hurting someone’s feelings” you will regret it.  I do.  Now I have had all the natural supplements I can take to counteract my dumbness (see the tab up top called Vitalize You).  I am in pain and going to bed.  So motivate yourself today by NOT feeling sorry when you have to do what’s right for you.  It’s better for you in the long run.

Walk away