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
This morning I woke up with a smile, memories of my great grandparents filled my mind. I don't really remember my paternal great-grandparents but my maternal great-grandparents were a hoot. Papa-E used to tell all of us that if we could put salt on a bird's tail, the bird would stand still so we could catch it. There were many afternoons I tried my best to sneak up on a bird in his yard with a salt shaker. :) I also remember the evenings spent on the tire swing, nervous that if he pushed me too high I would end up on the roof! My cousins tried to go higher to get ON the roof, Papa-E was positive if we went high enough we could get up there! I just didn't know how I was going to get down, so I wanted to stay on the ground.
It makes me wonder about my niece, Missy. What will she remember about me? She just turned four and calls me "my honey best friend"... I want her to remember that. I want her to remember the hours we spent playing school, house, dolls, and singing/dancing... I don't want her thoughts to be that I was always sick, sore, or tired. I do my best to be there for her, we share secrets and magical moments of Disney on Ice or dancing along with Pete's Dragon... I want her to remember our time together in a positive empowering way... She has no fear, no doubts of what she can do, that inspiring confidence of a happy secure child. Missy encourages me to be a better person, a confident woman, and gives me hope that all is not lost.
After a really rough fibro week, filled with aches pains and tears, Friday evening after work I got home, completely exhausted. I was physically drained and emotionally numb... Yet I woke up early on Saturday morning to get a dose of the best medicine in the world... time with one of my best friends.
Even though the weather was dreary chilly, we had a great time. She knows me better than anyone, could tell I was tired and we just had some quality down time. Laughing at the same things on tv, talking about everything under the sun, quality girl time is the best medicine! Thank you Tonia for a great afternoon!
Tonia and I have known each other over a decade, we are nothing a like but so much of the same. Two sides of the same coin, we go together like celebrities and botox :)
Every day spent with your best friend is a best friend day!
I’ve always admired Elizabeth Taylor, like many others I found her absolutely stunning and also an inspirational humanitarian. Growing up, I had heard of Ms Taylor but in the sense of tabloid stories and her movies. In 2005, I was properly introduced to her charity work and her pioneer spirit for dealing with AIDS research. One of my best friends at the time, Lady J, loved Ms Taylor and respected her whole-heartedly. Both women, Ms Taylor and Lady J, were strong examples of independent women who lived passionately.
Ms Taylor is a strong role-model for women everywhere. No one told her who she could and could not love, she went bravely into relationships full steam ahead. She turned a deaf ear to society’s attempt to restrict her affections to one or two husbands. Yes in today’s time multiple spouses are becoming the norm but when she brazenly divorced her first husband – it was unheard of at that time! This was also true in her friendships, when the world turned against Michael Jackson she stood boldly beside him as his friends, come hell and high water.
I have truly be inspired by Ms Taylor’s refusal to turn her back on those that needed her, she forged ahead with AIDS and HIV research when others in Hollywood would turn the other cheek. She was met with extreme negativity, even aggression, yet she didn’t surrender her cause.
"Dame Elizabeth was without doubt one of the most inspirational figures in the fight against AIDS," said a statement released Wednesday by the American Foundation for AIDS Research. "She was among the first to speak out on behalf of people living with HIV when others reacted with fear and often outright hostility. -CNN
I want to be that zealous about the people and causes that mean the most to me! I want to follow her example of courage and dedication, so that everyone knows where I stand and what means the most to me. I pray for the strength to love openly, not only people but charities that truly touch my heart. I hope that I am an unyielding friend who will not turn my back on people when faced with trials and tribulations.
The biggest way that Ms Taylor has impacted me may sound a little vain, but she always looked fabulous. She appeared confident, no matter what her health and abilities were at the time, she rocked it out – even in a wheelchair! Lady J pointed out to me when I was newly diagnosed with my condition that even Ms Taylor needed mobility assistant, and she was so much “herself” that no one even noticed her adaptations! That gave me the strength and guts to use a motorized scooter at the grocery store when I needed it or admit that I needed to hold onto the wall in moments of weakness while walking. For that alone, I owe a great deal to Elizabeth Taylor for my inspiration, and my friend Lady J for the backbone to accept when I need a little extra help.
When Lady J passed, in 2007, I didn’t think I could make it on my own. I emulated her and Ms Taylor in my every day activities, calling on their examples when I needed to be brave and stay true to myself and my passions. I miss her every day and as crazy as this may sound... When I heard that Elizabeth Taylor had passed, it felt like I lost Lady J all over again. I am always thankful to both of these ladies for their strength, encouragement, and examples they both set that I hope will help me become a better friend and woman of independence.
Whenever I get discouraged, I read this story. I wanted to share it with everyone.
A man found a cocoon for a butterfly. One day a small opening appeared, he sat and watched the butterfly for several hours as it struggled to force its body through the little hole. Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and could go no farther. Then the man decided to help the butterfly.
He took a pair of scissors and snipped the remaining bit of the cocoon. The butterfly then emerged easily. Something was strange. The butterfly had a swollen body and shriveled wings. The man continued to watch the butterfly because he expected at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened. In fact, the butterfly spent the rest of its life crawling around with a swollen body and deformed wings. It was never able to fly.
What the man in his kindness and haste did not understand, was that the restricting cocoon and the struggle required for the butterfly to get through the small opening of the cocoon are God`s way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Sometimes struggles are exactly what we need in our life.
~Author Unknown
If God allowed us to go through all our life without any obstacles, that would cripple us. We would not be as strong as what we could have been. Not only that, we could never fly. With the struggles that I am enduring and have gone through, God must have an amazing plan for me in the future... for all of us.
The last few days I have been extremely tired. Beyond sleepy, completely fatigued. Yet nothing has slowed down, if anything it is picking up speed! There comes days where I have so much to do and I don’t have any more spoons that I just have to say fork it and get it done. In my head I know that I need rest, honest sleep, and major downtime... but I don’t have the lifestyle that will allow for that. I have responsibilities at home and work that need me to actively complete my to-do list. Yet when I have time to catch a nap, my brain keeps reminding me of everything else I need to do.
I used to have a nature CD of a thunderstorm that helped me rest when my mind wouldn’t slow down enough to allow me to sleep. Here are a few more I am looking at purchasing:
Baggage is a game show that Jerry Springer hosts, it is a dating show crossed with To Tell the Truth - sorta. The point of the show is that the contestant is presented with three possible daters who have three pieces of "baggage" (unflattering secrets) to reveal. The contestant will then decide who will be eliminated based on their baggage (or ugly truths) The secrets range from mild to wild, with each reveal, the baggage gets worse. Once the contestant selects his/her pick of the available daters, then the contestant reveals a big piece of his/her own baggage and the chosen dater gets to decide if he/she can accept the contestant's baggage or not. This afternoon's episode of Baggage got me thinking... what would three pieces of my baggage be?
The first suitcase is always a some-what minor yet important thing. I think I would use the first piece of luggage to reveal that I live with my Mom. Yes I am independent, I financially contribute to the household and I have responsibilities that come with having your own house. I also take care of my Mom and she helps me on bad days.
The second piece of baggage I would open, would be that I have a chronic illness. Not that my condition is something that I am ashamed of, but it is something I like to put on the table before I become emotionally invested into something or someone. Call me cynical, but not everyone can handle a potential partner with a condition. I would rather put my cards on the table in the beginning, that way no one feels tricked later on. Plus that opens a door for me to talk more about my symptoms and what things I am able to do on my own and what things I can find a way to do.
The biggest suitcase that is revealed in the very last round of questions/answers is the whopper of secrets. So now it is time to reveal my biggest piece of baggage. I am emotionally fragile. Not really a big surprise eh? Once upon a time I was confident and not easily shaken, but since my diagnosis I have really grown to doubt myself. Things effect me in ways now that they never have in the past. Commercials that once made me laugh for how sappy they were now make me teary eyed. Perhaps it is the wild roller coaster that my hormones have been on since the addition of hundreds of medications over the years. Or maybe it is the way that my sleep is interrupted frequently from pain, I can't remember the last time I had a night of good honest sleep that was not medically assisted. Then again, maybe it is because of the rejection I have gone through (doctors, friends, bosses, employees, family members) who didn't believe in my condition or felt that I was "putting on a show" to gain attention. Not to mention that I'm not able to trust my body anymore, I have no way of knowing if tomorrow will be one of energy, pain, tears, or an exhausted emptiness that I can feel down in my toes. If I can't trust my body then how can I trust my emotions?
I understand and admit that everyone, healthy or chronically ill, has baggage. Someone once said "No baggage means you haven't been anywhere." Yet I wonder what does a person with chronic illness bring to the show that someone without might not have? I have friends who have similar insecurities yet they are perfectly healthy. Now that I think about it, my issues have always been my issues ~ I think my condition has just made me more aware of them.
These books have helped me so very much put events and hurts of my past in the past so that I can open my heart up again. It is a work in progress but this book is amazing.
More Information for dealing with emotional baggage:
The last few days, I have had major fibro fog. I feel like Dory off of Finding Nemo. You remember her right; she had no short term memory. Every few minutes she would reintroduce herself to Melvin, the not so funny clown fish who is looking for his son Nemo. No matter what horrors they experience on their rescue mission, she soon forgets and is smiling once more! Even though she may have been more for comic relief and to keep the movie light, I found her motto to be very inspiring. Lately, it's gotten me through a couple rough flare-up foggy days. Things will be rough and then a few minutes later its like its a brand new day and I'm smiling again, humming the little tune Dory sang.
Thank you Dory, for your inspiration!
Sing along with us! Lyrics are below the video:
Hey Mr Grump Gills You know what you gotta do when life gets you down? Just keep swimming Just keep swimming Just keep swimming swimming swimming What do we do we swim, swim, swim OH HO HO How I love to swim When you WAAAAAANNTTT to swim you want to swim
I've got dreams in hidden places and extra smiles for when I'm blue. ~Author Unknown
I stumbled across this quote today while I was at work and tucked it away to blog about later. I think this is something that everyone days, with or without a chronic illness. A song that makes me dance, a joke that makes me laugh, a ringtone I can sing along to ~ all of those are small ways that I bring some happy back into my day. Someone told me once in high school, that the best way to live is to live in charge. When things don’t go my way or seem to be falling apart, I try not to give control of my entire day up to those few minutes. I refuse to let traffic on the way to work or burning my lunch ruin the whole 24 hours!! OK So work was difficult, driving home with the windows down lifts my soul. Yes I’m fighting with my Mom, but I’m so blessed to have her in my life!
If everything else fails, playing with my Puppy always does the trick! That’s how I want to be, no matter what else is going on when I hear the squeak of my favorite toy (or first beat of my favorite song) I want my world to light up and be all smiles and happy barks.
I have a few movies that guide me through either emotions I need to express (tear jerkers) or can captivate me so I forget my problems (usually romances or fantasy) or can even lull me to sleep with the safe familiarity of a movie I've seen a dozen times (like Shrek or Ever After). If I need time just to clear my head and think but not think ~ I color. I have books of large pictures without a lot of detail so I don't have to focus much, I'm able to lose myself in the way the crayons transfer onto the paper with each stroke. Another guaranteed pick-me-up is messing with my flowers during the spring, or my bird feeders. Its all about finding what works for you.
If you aren’t sure what your little perk is yet, I’ll share one of mine! It always makes me smile and sing along. Craig Morgan's: Redneck Yacht Club.
If country isn't your thing, here's my second favorite song to pep me up! Sister Sledge's 'We Are Family'!
Inspired by Sick Momma's blog carnival, I would like to post about a Guilty Pleasure that my condition has blessed me with! Personally I think the perspective is brilliant and is something that should be considered more often. But then again, I was always a silver lining kind of girl. :)
I started helping out in the yard as soon as I was old enough to understand the concept of picking up sticks and rocks and carrying them to the ditch. As soon as I was mature enough, I was mowing and then eventually weed-eating. Needless to say, I've never enjoyed it. But since my diagnosis of fibromyalgia, I don't have to do it anymore! I don't do well out in the heat/sun for long periods of time so that rules out the actual mowing and the fatigue is too much for me to be carrying around that weed-eater and trimming up the edges. While my condition has taken many things away from me, this is something I would have happily donated for the cause! The best part is that we were able to hire this really nice guy at work to come and do it, he has his own small business on the side. Not only do we get a great looking professionally done yard but secretly the best part is that I don't have to do it!
I have become a text-a-holic since my diagnosis. I save spoons by NOT having long emotional conversations with everyone who contacts me every day, texting is so much easier! I also have become a major fan of twitter and facebook, using them to stay in the loop. Of course my blog is another thing I allow myself to have, all of which encourage me to rest while keeping my mind active...both things that are needed when one has chronic illnesses. At least that's how I justify my social media dependency LOL
Another guilty pleasure that I freely partake in is lazy days in bed, watching digital cable's on demand selection. I try to take at least one day a week to rest as much as possible for maintenance rest, even if I don't "need" it as much as I might at other times. I don't fake pain or pretend to be stiff, but I do chalk it up to something required in order for me to keep balance in my world.
In the earlier part of February, Extreme Home Makeover came to the Chattanooga Tennessee area to grant the wish of a local family who were in desperate need of a new house! The family selected truly needed the home makeover; the son is adorable and so upbeat – despite having extremely fragile bones. Traffic on that side of the city came to a screeching halt as the entire city and surrounding areas were abuzz with the opportunity to help this deserving family.
This got me thinking... if I could give myself a complete home makeover (with unlimited funds), what I would request to make my house fibro-friendly? At first I wanted to suggest things I always wanted: Olympic sized indoor heated swimming pool, a gazebo under a big shade tree with tons of bird feeders, a domestic staff to allow me to rest, a beautiful lush backyard for Molly to run openly and wildly in, and of course a hunky yard guy to tend to the outdoors. But then I got to thinking about what I truly needed, that would help with my most frustrating symptoms.
Here is what I came up with:
A larger bath tub with a hand railing so that I could take a hot bath and long soak on days I need it.
A very powerful air conditioning unit that also has the ability to heat.
One room in the house with sound proof walls, so outside noise is blocked out, dark curtains to keep the light out, and a small fridge of my favorite beverages. I would also want the phone extension in the room to light up instead of ring so if I'm asleep I'm not disturbed.
A doggy door that leads into a large fenced in back yard so that my babies can go in and out as they need to and please without me having to carry them back and forth on bad days.
A roomy kitchen with a fridge that has an ice maker, a bottom shelf freezer, and a microwave that is on the counter and not overhead.
A large heated indoor pool for when I need to stretch and work my muscles out, water therapy is the best way (and most fun) to accomplish it safely.
As I have been thinking about this, I began to realize the adaptations I have made to my current house to make things more fibro-friendly.
We have a rolly (office) chair in the kitchen that makes it easier to do everything from dishes to preparing food while in pain. I cant stand for long periods on bad days, and thanks to the smooth floor and rolly chair, now I don’t have to.
I have blankets hung up over my windows in the bedroom to block out the chill of the night and the brightness of the sun.
I have a back scratcher that allows me to either scratch an itch, or brush the cool bamboo over a part of my back that is alive with nerves. I can also put a sock on the end or wrap paper towels around the end to apply lotion.
I am addicted to Icy Hot in the spray can, it soothes sore muscles without stretching me out too much trying to apply the cream. For large muscle aches, the patch works too
I use an electric blanket as a full body sized heating pad.
I have small red wagon outside, to help get groceries and supplies in the house when I’m not able to do a lot of lifting/carrying.
I am truly blessed because my employer has also given me tools to help me continue to do my job, no matter what my health brings. I am granted the honor of working from home on days I am unable to go into the office. I am so very thankful for that.
So all in all, I didn't really need an Extreme Home Makeover, I just needed A Perspective Makeover :)
Here are a few things that make my life a little more fibro-friendly:
This morning I woke up with a smile, memories of my great grandparents filled my mind. I don't really remember my paternal great-grandparents but my maternal great-grandparents were a hoot. Papa-E used to tell all of us that if we could put salt on a bird's tail, the bird would stand still so we could catch it. There were many afternoons I tried my best to sneak up on a bird in his yard with a salt shaker. :) I also remember the evenings spent on the tire swing, nervous that if he pushed me too high I would end up on the roof! My cousins tried to go higher to get ON the roof, Papa-E was positive if we went high enough we could get up there! I just didn't know how I was going to get down, so I wanted to stay on the ground. 
It makes me wonder about my niece, Missy. What will she remember about me? She just turned four and calls me "my honey best friend"... I want her to remember that. I want her to remember the hours we spent playing school, house, dolls, and singing/dancing... I don't want her thoughts to be that I was always sick, sore, or tired. I do my best to be there for her, we share secrets and magical moments of Disney on Ice or dancing along with Pete's Dragon... I want her to remember our time together in a positive empowering way... She has no fear, no doubts of what she can do, that inspiring confidence of a happy secure child. Missy encourages me to be a better person, a confident woman, and gives me hope that all is not lost. 
