The content in this blog is based on my experiences and the guidance I have received from my Care Team determined by my individual and evolving needs. Before beginning, trying, or experimenting with anything mentioned in this blog, you

Monday, February 28, 2011

Asking the Wizard...

High winds (83+ mph), massive amounts of rain in a very short period of time.  Trees were struck by the lightening, power lines down, wrecks galore!  Huge trees were either uprooted by the winds or struck by lightening, destroying houses and cars alike.  Green overhead road signs were ripped from the interstate and twisted up and discarded on the sides of the road.  Reminds me a lot about the opening scene to the Wizard of Oz, except no one’s hollering at me to get in the root cellar to protect me from the tornadoes that ripped across Chattanooga.  

Growing up, I always dreamed of going Oz.  I never knew what I would ask the Wizard for though, but now I’m starting to get an idea.  At the end of the movie, Glinda revealed to Dorothy that she always had the power to go home inside of her... she just had to find it.  That kept me from wishing for things from the Wizard growing up, because it reminded me that I had the ability to do everything I desired within me.  But now, as an adult with chronic illnesses, I know what I would request.  I would beg the Wizard for self-acceptance and unconditional (self) love.  Not in the sense that it would make me a self-absorbed vain diva, but in the way that it would allow me to believe in myself – even on bad days, that I am still a good person. 

When the pain is so intense I can barely breath, when I’m so exhausted that getting a drink from the kitchen takes every ounce of will power I possess...  in those moments of complete weakness, exposed in absolute vulnerability...  that my biggest fear begins to fill my mind… that I don’t deserve love.  I don’t mean from my family, friends, or puppy, but romantically.  Everyone I have met with chronic illnesses in my age group was married before their diagnosis.  I wish there was a way to meet others who are single, not with the intention of ‘hooking up’ but because I wonder if I’m the only one that uses my illnesses as a shield to keep others from seeing me...
“You’re a very bad man,” said Dorothy. 
“I’m a very good man,” replied the Wizard, “I’m just a very bad wizard.”
No matter what the circumstances of anyone’s life, self acceptance and unconditional love is about the journey ~ not the destination.  I think it is a bad idea to truly become at ease and complacent with every aspect of life...  Change comes from being uncomfortable, growth is an opportunity that comes with change. 

I am a good person.  I am kind, I give to others and I take care of my family.  I am so very blessed to have a support team that loves me and geniunely likes who I am.  I am doubly blessed to have been kept safe during the tornado touch downs and storms today.  I don’t need the Wizard to help me see that...  but on bad days, the fantasy brings me comfort.  

Plus I’d love to see the horse of a different color... at least once! :)

Sunday, February 27, 2011

Relationships becoming a pain?

Like many others with chronic illnesses, I struggle to maintain healthy friendships and relationships with others in my world.  Even though I try not to, sometimes I project my fears or my frustrations off on other people instead of focusing them on where they belong, my inabilities to do what I desire, because of my condition. 

Then, on twitter, someone posted this.  It definitely gives me something to think about.

Friday, February 25, 2011

New Kind of Bag Lady

Hello, my name is Amber and I am a bag lady. 

No, I don't push everything I own down the sidewalk in a shopping cart.  But I do own approximately twenty of the reusable grocery store bags.  $0.99 here, $0.50 there.  Green ones, blue ones, brown ones, and a yellow one.  I keep a few in my truck, my Mom's van, in the kitchen, and on the freezer.  I have them everywhere!  And I love them!  Why so many you ask?  Because, sometimes I cannot remember to take them with me on a trip to the grocery store.. so I buy another one.  

Of course, on the surface I pretend to do it for the Green aspect of saving the world... but the truth is, the only world it is saving is my own.  Like many people with a chronic illness, I find myself with less energy than I have things I need to accomplish.  So I have a system now, and it works for me.  I limit my shopping trip to two of the fancy smancy canvas bags.  Everything I buy will need to either fit in there or add very little weight to those two bags (like a pack of toilet paper).  (Don't get discouraged, you will be surprised how much you can put in those bags if they are properly packed!)  I would much rather carry a canvas tote of my items than wrestle ten to twelve of the half filled plastic bags.  The bags make it so much easier to load and unload the car.  And when I have a cooperative cashier, I can group items together so that its easier to put up the groceries at home too!  (IE: Cold/Frozen things in one bag, park that right by the fridge!)  

For me this is a fibro-friendly item to have on a shopping trip, good day or bad!

The absolute best part is that some grocery stores (like Bi-Lo) will give you a nickel off for every tote bag you use that saves their plastic bags!  OK so it is just five cents, but that adds up at the end of the year!  That's the other reason I might mumble off when asked why I am always carrying the bags with me.  

But now I can say it loud and proud.  I'm a bag lady because it makes shopping easier on me!  

While I purchase mine at the local stores up by the registers, you can also order something a little more personal for a reasonable price offline. 

For more information on creating your own fashionable tote bags, please check out the links below.

Support Fibro Warriors

Like everyone else with fibromyalgia, I have been chastised by Medical Professionals (Doctors and Nurses alike) for "having it in my head that I'm hurting".  Or I'm told that my weight or whatever else is the issue, no wonder I'm in so much pain.  Fibro is often labeled an Invisible Illness because it has symptoms that are felt, rather than seen.  

This quote is kind of wordy but I really like the meaning behind it.  It helps, when those who understand nothing they cannot see try to belittle my intelligence or experiences, when Fibro truly exists... and it is a battle every day. 

"It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat."    ~ "Citizenship in a Republic," Speech at the Sorbonne, Paris, April 23, 1910

Tuesday, February 22, 2011

Rough Night

Over the years I have read dozens of blogs from authors who have some sort of illness or disability.  They tend to be upbeat and really don't show the down sides of having chronic conditions.  I want this blog to be honest.  Good days and bad. 

Last night was a rough night.  I was restless, muscles were aching, hot flashing, and couldn't sleep.  I was uncomfortable and couldn't stop crying for long.  Plus my sugar is sky high!  Along the way I have learned to pay close attention to my body for signs of what it is trying to tell me.  I think I am getting some kind of infection, so I will get out my antibiotic supply and start a few days of one of them.  I'm still not feeling well today, but I have an idea of what is going on.  There are certain infections I tend to get frequently, otherwise I would call the doctor. 

I've always had emotional responses to infections and illnesses.  Not just the normal tired whiney mood but I can do a pretty good job knowing what is going on in my body... sometimes. lol  When I have a respiratory infection, I tend to sleep all the time and cannot seem to shake the fatigue.  When I have a staph infection, suddenly I question everything about myself and cry a lot... I don't mean a few tears here and there, I mean uncontrollable weeping until I have a hard time breathing.  

The hardest part of having fibromyalgia and lupus isn't the way that I have to find new ways to do things I have done forever... or the way that my energy goes from normal to non existent in a heartbeat... the worst part, for me, is the loneliness that comes with having a chronic condition.  From time to time, I can feel myself being pulled into isolation for a brief period, I don't know how to describe it and don't understand what happens.  My solution?  I watched a few movies to try and take my mind away from it and today I will rest as much as possible.  

Monday, February 21, 2011

Talking about Feet

I'm not a fan of feet, in the slightest, but I do take care of mine.  When I have extra money, I like to get pedicures and keep my toe nails polished because I want them to look as pretty as possible (for feet).  Plus want to give the impression that I am as healthy as possible, properly hydrated and paying attention to what my body is telling me... via my feet.  lol   There are things I am not able to do, but having cute feet is NOT going to be one of them. 

A couple years ago I was going to a Massage Therapist (she was a huge part of my Care Team) who said that she could tell how I was feeling based on my feet and the sensitivity of the different sections of them.  Reflexology is centered around the feet and reading their signs to listen to your body.  It is something I have researched briefly but haven't gone into it very much.  

Today at work, I was closing my email and seen a link for this article that I found fascinating!  So here are 18 Things Your Feet Say about Your Health.

Friday, February 18, 2011

Vitamin D and the weather

The weather is dreary and cool, it makes me ache just enough to be uncomfortable and to encourage me to be very sleepy.  I have learned along the way that I need a little bit of sunshine every day, about twenty to thirty minutes worth of the sun's warmth does wonders for my mood and energy levels.  In the beginning I thought it was the general warmth and the enjoyment of a beautiful sunny day that did the trick, but the more that I have studied I realize it is probably about the Vitamin D.

Vitamin D comes into play in maintaining balance and general good health/moods.  My sister, Jennifer, for example takes a supplement of Vitamin D because she doesn't tolerate the sun well at all.  Using sunscreen, I am able to spend enough time in the sun to satisfy the amount of Vitamin D that my body is craving.  That being said, I tend to experience a few side effects of Vitamin D from being out in the sun for too long.  Vitamin D is also available through dietary measures, eating things like eggs, different kinds of fish, and some cereals.  So my advice to everyone who wants to experiment with Vitamin D and its effect on your mood/pain levels is to take it slowly and see what works for you.  

A little sunshine, when experienced with proper sunscreen, never hurt anyone!

Read more about Vitamin D here:

Thursday, February 17, 2011

Five Hour Energy

 I have a few people at work that have been talking about the 5 Hour Energy Drinks and how much they help.  

11a.  This morning started off to be a fairly good morning, low pain but also moderate level of energy.  I knew I had a lot to do at work today and things to do after work so I thought I would give the 5 Hour Energy Drinks a shot.  So at 11.25a this morning, I drank a grape one.  

12p.  The taste was semi-nasty, yes, and it took a few seconds to really get it down.  But within fifteen minutes I could definitely feel a pick-me-up.  and by noon I was talking non-stop!  

3.47p.  I have had a great day, I feel good, I have energy, I am talking a lot and laughing like I haven't in a long time.  As of this moment, I would definitely recommend this for those days of absolutely no energy when you need to get things done.  I am strongly considering making another purchase (or two) so I will be prepared for days of low energy.  I am very curious about how I will begin to feel as the drink wears off.  I wonder if I will be very tired, if I will be sore, or if I will just slowly run out of juice.

5.40p.  The drink has definitely worn off, I don't feel any different than I felt this morning before drinking it.  I feel as though I have been more productive which gives me a good feeling, but I am starting to get tired. 

10.30p.  I'm exhausted, but still feel that I was productive today.  Nothing really feels out of the ordinary. 

There was no crash, no dropping of mood or focus, just a slow decline in energy.  Before I knew it, I was talking at normal speed and thinking about a nap.  Just like I would be around that time of the day anyway. :)   

Wednesday, February 16, 2011

Finding a Balance

"The greatest mistake you can make in life is to be continually fearing you will make one." 

- Elbert Hubbard

I have always been a cautious person, doing my best to think out consequences to ensure whatever decision I am making is a 'good' one.  That has gotten a lot worse since my diagnosis of Fibromyalgia.  Now I tend to factor in the emotional or muscular backlash of what could come next and how that factors into a possible flare-up.  Like many with Fibro, I used to go wild on good days, over-extending my body and energy so that by the time night fell, I was completely miserable and hurting.  I don't do that anymore, I am still learning proper management of my resources so that I can have as many good days as possible.  

There have been days where I miss the freedom of random selection, not having to worry about any kind of triggers that could slow me down days on end.  Other times I appreciate the way I take the day minute by minute, enjoying the small things that so many take for granted.  I wish there was a way to do both, appreciate each moment yet still live like there is no tomorrow.  Perhaps, with this blog's help, I will find that balance.  

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