My Life with Fibro...Series 2

Some days it feels like life just drags us through, whether we are ready to follow along or not.  That sure seems to be the case for me at the moment.  It seems that the harder I try to slow myself down and take care of myself and my health, the harder life pulls.

Having fibromyalgia doesn't give anyone the right to be lazy for sure, as that is the worst thing that you can do for your condition.  But, why is it that so many who do not suffer with the disease cannot see that in doing what they would consider an easy task takes me at least three times the effort?  Invisible disease?  Well, yes it is.

If I could magically show them every single ache and pain that I have, I think I would.  If I could put into words how tired I am...most days the minute I am out of bed...I would do that as well.  This is where the frustration comes in.  I understand that people can not fully grasp something that they have never experienced, but it seems that for the most part, empathy is dead.

Learning to live this life differently than I did even 10 years ago is the most difficult task.  Understanding in your own mind that you will never be the same is devastating to say the least.  This is where the psychological part of fibromyalgia steps in.  Depression is a real part of this disease.  The severity of the depression depends on each patient individually.

Each morning when I wake up, whether I want to or not, I sit up on the edge of the bed and mentally prepare myself for that first step.  The physical part will come, I always hope.  I say a little prayer that with that first step I am not in too much pain, that I do not fall down, that I can make it the few steps to the bathroom without bumping into anything, adding a new bruise.

I refuse to let this disease consume my life any more than it already has.  I am kind of a stubborn person (this is where my husband would laugh).  Even on my bad days, I make it my mission to get up and do just one thing.  Motivate myself through just one small task.  When I finish that task, I start the process over and try to overcome one more, until I can absolutely do no more.

In writing this blog, I have taken a huge step.  I am learning to overcome the fear of voicing my pain and struggles.  I ask for help when I need it.  And, I am learning that I am not the only person going through this. Always reminding myself that there are others out there that are in far worse condition than I am.  I have found many fibro-friends and we support each other.

My best advice....don't be afraid to tell your story and find others who truly understand your daily struggles, they are out there.  Let's support each other through this.

I'm Still Here!

WOW!  Can't believe that it has been a week since I last posted.  It has been a crazy time for sure...some good, some not so good.  So here I am to update any of those reading about my fibromyalgia plite.

First, I finally got the results back from my biopsy on my thyroid...GOOD NEWS!  The tumor is benign.  I don't have to deal with that whole situation again for another year, as long as there are no changes in the size, pain, etc.

Second, my left hand that I have been having pain in for the last four years and already had surgery on once two years ago, is getting ready to have another surgery.  At this point, my orthopedic surgeon is trying deligently to pinpoint the exact spot around my thumb that is causing all the trouble.  I will finally be brace free in three short days!  I am so excited about that.

Lastly, my husband and myself have made the difficult decision to sell his mother's home and contents.  She has Alzheimer's Disease and was sent to a nursing home a little over a year ago.  The house has sat vacant for the past year as we all tried to come to terms with what needs to be done.  I would never wish that upon anyone.  Needless to say, it going to be a long and difficult summer as we box up possessions and memories and auction them off in September.

With my fibromyalgia and the impending surgery on my hand, the task at hand is going to become even more difficult physically than someone is healthy.  Please say a little prayer.

So, for now, alot of my projects that I was planning on completing and sharing with you will just have to wait a bit.  I still intend to complete them and to keep my promise to blog about my daily experiences living with fibromyalgia.

Color your world and go out and create something beautiful!

Don't Wait For The Perfect Moment

Today, I thought that I would share an inspirational quote picture that I made a few months ago.  I love the quote and the photo is awesome (it does not belong to me--was taken from Google images).  I hope that it inspires you.

With my hand being in a brace, I haven't been able to be too creative.  It is too difficult to accomplish much at this point.  I am hoping to get back into it very soon...at least I hope to.  I am not one to like sitting around much. 

I hope this helps to inspire you.  Go out and create your world.  It will make the world a more beautiful place.

Fibromyalgia Awareness Day

I wanted to take a few minutes today to remind everyone that today is Fibromyaglia Awareness Day.  I hope that you are wearing your purple to show your support for this invisible disease.  Let's show the world that when you are a fibromyalgia sufferer, or know one, that it is a very real disease.

My Fibro Experience - Series

Tomorrow is Fibromyalgia Awareness Day.  It is a day set aside to bring awareness to this invisible disease.  Many communities have Fibromyalgia Awareness Events scheduled to help raise money for research and a cure.  Unfortunately, my community does not have any activities scheduled, however, I did find a great resource to aid me bringing an event to my area in the future.  If you would like to see how to bring an event to your area you can read How to Organize a Fibromyalgia Awareness Event and get some great information for organizing and planning.

Fibromyalgia comes in many shapes and sizes.  Each person suffers and survives in different ways.  In my case, I just pull myself up each morning and make myself go.  Some days I can "suck it up" and others it is just not that easy.

For the past three years, I have been having trouble with my left hand.  In 2010, I had carpal tunnel surgery and index trigger finger release surgery.  Following the surgery, the pain seemed to increase and moved to the joint in my thumb.  I was sent to doctor after doctor for this test, x-ray, MRI, etc, and nothing showed a problem, other than rheumatoid arthritis.

Over the years, I have learned that you must be persistent when comes to your own body and healthcare.  I changed doctors (orthopedic) and continued to insist that something be done to reduce the pain.

In the past year, the use of my left hand has diminished dramatically.  I have not been able to hold on to anything with any kind of weight (i.e. bottles of water, etc).  If I couldn't balance something between my fingers, it was on the floor.  The use of my fingers and thumb is very limited.

Finally, two years from the first surgery, my doctor is considering surgery to repair and/or relieve my pain and give me use of my hand again.  I am not excited to have another surgery, but have come to believe that any relief and/or use of my hand is better than what I have now.  So, the waiting has begun.

My purpose in sharing this story with you is to show you that persistence pays off, eventually.  It is your body and your health.  If something doesn't feel right, it probably isn't.  Fibromyalgia patients most usually can tell when a pain is "normal" or not.  If something doesn't seem right and your doctor isn't taking you serious, keep after them or get a second opinion.

DISCLAMIER:  I am not a medical professional and do not offer medical advice.  I am simply sharing my own experiences.  This should not be considered medical advice in any way.

Don't forget to wear your purple tomorrow to show that you are either a sufferer of Fibromyalgia, or know someone who is.  Let's show the world that Fibromyalgia is real!

A Day at the Park

When you live amongst such beauty, how could you not enjoy photography?

I have always been the person you see with a camera in hand.  In fact, my friends have made fun of me for years for it.  They are also aware that if I am around, there chances of getting caught on camera is high.  I don't know if that is a good thing or a bad thing for them.

Today, I wanted to share another group of photos that I recently took at a local park.  This park has always been beautiful with a large pond, greenery and a cave.  Over the years, it became rundown and wasn't always the cleanest park in town.  However, recently the park board has been working very hard on cleaning up.  They redesigned the entire park, but left the best parts alone.  Now it is an enjoyable place to be again.

Enjoy!

This small stream flows from the cave inside the park.  The cave was discovered in the early 1800's and was used by the family that lived on the property for food storage.  

It is said that the cave was also used by Jesse James as a hide-out when he passed through this area robbing banks.  (We have alot of Jesse Jame cave hide-outs in this area--he must have liked caves alot!)

The new bridge.  The rocks holding it up were recycled from the old wall that surrounded the pond...awesome.

I loved this shot.  I was playing with the ISO to capture the water movement and ending up creating something looking like a painting.

After several years, the cave has been opened back up for touring.  One day when I am feeling capable and have the right shoes on, I think my camera and I will be heading inside.

Don't forget to look around you and enjoy the beauty God has given you.

Go out and create your world!

More Missouri Beauty

I am lucky enough to live in an area that has much green space, trails and gorgeous parks.  When I have the time, I love to grab my camera and go walking.  There is so much beauty all around us that if we aren't watching closely enough, we miss it.  I didn't really discover this until I started teaching myself photography.

This is the one hobby that allows me to make something beautiful when my body doesn't cooperate with me...which can be more often than not with fibromyalgia.  With my recent order from the doctor not to use my left hand for three weeks, I was crushed.  Now what do I do with myself?  Grab the camera of course.  It's not the easiest to focus, but I think I have it figured out.  So, I am going to share some more beauty with you in the follow days.

Take some time to look around and create something beautiful in your world.

Breast Cancer Awareness Bracelets

A few months ago, my sister-in-law was diagnosed with breast cancer.  She is currently going through treatment and fighting the good fight.  She is one tough lady with lots of love and support around her.

As you know from previous posts, I really enjoy making jewelry in my spare time, especially chain maille jewelry.  I was working on some projects when I got the idea to make some breast cancer awareness pieces for all the women in the family to wear in support of our family member who was diagnosed.  I began gathering all the charms and beads I could find to get started.

Here is the result of countless hours of weaving.

The idea is that the family can wear these in support of her and when she is wearing her's, she can know that she has alot of support and love standing with her.  I can not imagine going through anything like that.  Like I said before, she is a strong lady.

I haven't made the decision to continue making these and selling them, but am considering it.  I also plan to make similar bracelets in support of fibromyalgia, the disease that I live with.

Currently, I am a hand brace (I like to call a cast, as it might as well be).  I have to wear it for three weeks.  At that time, I will be finding out whether or not I will be having surgery on my hand.  The only upside to this situation is that it is my left hand (I am right-handed).  The downside, I cannot do any jewelry making or crafts until the hand is fixed and working properly again.

Once again, this disease is trying to beat me.  It will not.  I am way to determined for that.

I hope that these designs inspire you to go out and create your world.

Beauty in the Ozarks

Recently, I had the opportunity to grab my camera and disappear for a couple of hours.  That does happen as often as I would like.  So, I snatched the small window of time that I had and headed to a local park to capture some beautiful shots.

These shots were taken at Rutledge-Wilson Farm Park in Springfield, MO.  It is a great park for children's learning of farms.  It has a lot of beautiful open areas, trails, barns and, of course, play equipment.  For a photographer, it has so many places to catch wonderful shots, you couldn't catch them all in one day.

I am lucky enough to live in the Ozarks, where there is always beauty abound.  I never run out of places to take my camera.  Finding that perfect shot only requires that I am paying attention.  With or without a photographers eye, you will find a great photo waiting to happen.

So, go out there and create your world.  If you can envision it, it is only waiting for you to bring it to life.

More Fibromyalgia Talk

I wanted to continue the previous discussion of living with fibromyalgia.  Many of us who suffer tend to get caught up in the feeling that no one understands or is going through what we are.  Guess what?  There are millions of us out there.  In fact, there are at least thousands with your exact issues.

There are so many doctors out there who have no understanding of fibromyalgia and all of its aspects on your health.  In my experience, most general practice doctors either do not have enough formal training on this disease or just don't want to have to deal with the "complaints" of its sufferers.  Therefore, they send you on to a specialist, usually a neurologist or rheumatologist.  These doctors do offer a bit more information, but I haven't found one that I feel takes my disease completely serious.  They continually prescribe medication and change it up every 3-6 months if it doesn't seem to work.  Eventually, they seem to give up on trying to soothe the aches and pains and offer no more assistance.

That sounds very harsh, I know.  I am not at all saying that good doctors aren't out there.  I have had both good and bad ones.  I don't want to beat up on them all.   However, I would love to see more doctors in large urban areas that are specialized in nothing but fibromyalgia and chronic pain syndrome.

Recently, I was sent for an MRI due to severe hand pain.  Don't ask!  I know, what does your head have to do with your hand?  I asked and received a long answer from the doctor.  I digress.  The MRI found a "nodule" on my thyroid and an ultrasound was ordered.  The ultrasound found a large mass on my thyroid.

At first I was wondering why this on top of everything else.  Then I found an interesting article that described that thyroid issues can plaque those with fibromyalgia.  How did I miss this in all my research?  Anyway, here is the link for you to read the article if you like:  Fibromyalgia and Your Thyroid

I do not wish to seem like I am rambling.  Well, I kind of am.  But, my point to this post for those with fibromyalgia is:  Always be aware of your body.  If you have new symptoms or pains, do not disregard them as a side effect of your disease.  We all hate practically living at the doctor's office, but your well being is worth having checked, even if it seems you are a hypocondriac.  I would much rather carry that label than to disregard a symptom of a more serious problem which could take my life.

I am currently scheduled and anxiously awaiting the thyroid biopsy to determine if this mass is cancerous.  I will keep you posted.

DIY Flower Pot

I have been a busy, busy girl...of course.  I think that is just the way of my life.  I hate standing still, so in my down time I am creating.

Recently, I went on a search for a new flower pot for a plant in my home.  I looked everywhere for just the perfect pot to go with my new decor in the kitchen and dining room.  Everything that I looked at just wasn't right.  The pots that I could have settled for were very expensive for me.  I began to get frustrated until.....my "ah-ha" moment.  In the distance, I seen the shelves full of terra cotta pots.  I am not usually a fan of terra cotta, but there it was and my mind began creating it.

I purchased the size of pot that I needed and returned home to search through old scrapbook papers that I have stored.  There it was, the perfect paper, color, print and all.

My friend, Mod Podge, and  I got started smoothing the paper over the terra cotta pot.  At first, I tried to smooth out all the wrinkles.  This was getting more and more difficult.  I stepped back and took another look at the wrinkles.  Guess what?  They added more character, so I let them be.

It took two pieces of scrapbook paper to cover each side, which left me with a unsightly seam.  So, I used a piece of the coordinating  paper that I used on the top.  It worked out well.

A little blending and antiquing with some paint and it was coming together, except at the rim where the two papers met.  Solution:  I used some scrap jute rope from a previous project and began wrapping it.  It made the entire project some together.

Now for getting the soil in it and tranplanting the plant.  Since I have a black thumb, I hope that I don't kill it in the process.

Go out and create your world.  Always take a second look at items.  This will let you open your mind to changing that item to fit into your decor.  You might just like the results.

Let's Talk About Fibromyalgia

I was diagnosed with fibromyalgia over nine years ago.  I didn't completely understand the disease and what it did.  Anyone that I had ever come into contact with who had this disease was either in a wheelchair or walking with the assistance of a cane.  I have to say that I was terrified.

I made it my mission to gather all the information I could about this disease and talk to anyone who knew anything about it.  I knew that there was no cure, so I was in for a life sentence.  Books became my most important ally at first, then I moved on to the internet.  I read anything that mentioned fibromyalgia.

I admit that after that period of time, about two years, I fell into a deep depression.  I cursed God and didn't understand why this was happening to me.  It took me a long time to come to an understanding with myself.  I could either let fibromyalgia get the best of me and end up in a wheelchair, or I could fight with everything I had to stay mobile and take back control of my life.

My first order of business was to get my body moving every single day, whether I felt like it or not.  It is hard, most days very hard.  But, I still do it.  My new motto is, "No Pain, No Gain".  I refuse to give in to this.  I will not go down fighting.  

I think that the most difficult thing for me everyday is the "Fibro Fog" or brain fog.  It is frustrating and sometimes embarassing when I can't find a word and voice it.  People look at you like you have gone insane.  Some days, that is exactly what it feels like.  

My combat for the fog is to keep my brain as active as my body.  This too is difficult.  Probably more difficult than forcing a body in pain to move is forcing a brain to function.  I read a lot, play memory games on the computer, anything that makes me think through every process.

I hope to continue putting my story out there in future posts.  I know that in my research, reading someone else's story made me understand better that I am not the only one on earth going through this.  It also made me realize that I am not as bad off as some who are fighting fibromyalgia.

You are welcome to leave your comments and stories.  I will read every one.  Support and awareness are the best defense.

Dollar Store Upcycle Rope Vase

You can surely tell that it is spring!  Things are crazy busy all the time.  The yard work and flowerbed preparation has begun.  Together with appointments and just my all around struggle with fibromyalgia, I feel like I am either spinning out of control or stuck in bed.  It greats frustrating at times and I just don't feel that my long list of projects will ever reach its end.

I have, however, been able to fit a few small ones in here and there.  The lastest is an upcycle rope vase which was inspired by something that I seen on Pinterest, of course.  I have a box full of old glass vases from old flower arrangements or dollar/thrift store finds.  I have never been able to just get rid of them.  I have no idea why.

My solution to this problem is taking a few of them and wrapping them in jute rope.  That way they can match on the exterior, but it doesn't matter what size or color they are on the inside.  It's all the rage to have mismatched shapes and sizes.  So, I began.

On a recent trip to the local one dollar shop, I was able to find skeins of rope.  It is not as thick or dark in color as some of the more expensive choices.  But, it was only ONE DOLLAR for each skein.

A little Mod Podge and the vase, and I am ready to begin.

I started by placing a piece of waxed paper on my work surface.  I could see this was going to get real messy, real quick.  I then began putting a little Mod Podge (glue) not only on the bottom of the vase, but on the rope as well.  I held the end to the vase with my finger and began slowing wrapping and stacking the rope. Remember I told you it would get mess, well it did.

Make sure that you keep glue on the vase and rope throughout the process.  It makes the rope stay in place a little better because it keeps it tacky.  Also, keep an eye on your project so that you are making sure to push the rope together (downward).  You don't want too much space showing through.

All was going just as planned until I got to this point.  The extreme curve in the vase turned out to be a bit tricky.  I solved the problem by adding some rope up the curve and keeping it as uniform as possible.  It proved difficult to keep the rope pushed down so that space wouldn't show, so I gave up on that through this point.

Once I had it applied the best I could.  I stopped and let that much dry overnight.  Don't cut the rope, just make sure it isn't touching the rest of the project.

The next day, I began applying the glue and rope the rest of the way up the vase.  At the top, I overlapped the rope a few times to give it a wider looking opening.  A trick of the eye.  Cut the rope and glue it down as good as possible.  Don't worry if it comes up a bit, you can cut it off closer after it dries.

I didn't forget about the mess around that curve.  Now you can go back to them.  Apply a good coat of glue over the rope that was applied before.  Fill in the spaces with more rope.  Stack it up as high as you want for design purposes, or just wrap it to fill in.  Use the same procedure for cutting the end as you did on the top.  

After you have let it set overnight, go back with some scissors and cut off the excess rope and any annoying frays.  The dollar store rope will have a lot more of those than the more expensive rope.  I used just over half of one skein of jute rope for this project.  So I spent less than one dollar for this vase.

WHAT I LEARNED FROM THIS PROJECT:

• Patience...alot of patience.
• Don't use a vase with an extreme curve in it if you didn't learn the first point (patience).
• Don't be afraid to stack the rope up for a more 3 dimensional design.
• Be prepared to scrub and peel Mod Podge off your hands and nails for a while...especially if you have long fingernails.

Go out there and create your world!  It doesn't take alot of money, nor does it take alot of artistic ability.  If it looks good to you, then you are successful!

I will be making more of these and maybe use them as gifts.  I am always looking for a last minute gift for someone for a housewarming, birthday, etc.

Please leave me a comment and let me know how your project turned out.  Share what you learned from the process.