Finally at rest...

Hurt. Anguish.  Denial. Death....living...how do you get passed losing someone who you were slowly warming up to? How do you say goodbye to someone who you had just begun to accept into your heart? We guard our hearts from pain, only to get it crushed into thousands of tiny pieces all over again.  I've tried to keep the memory of my father alive while also trying to accept a new father.  The juggling act of acceptance came at a high price, although Steve never complained at all.  Steve always told me that I would open up at my own time.  Having to relive this situation for the second time in my life is the worst feeling.  For years he had been a "constant" in my life.  He showed his support, understanding, and above all love.  And I thank him for that.  I am honored to have known him for the time that I did.  I am thankful for the years that he brought joy to my family.  My prayer is that he is at peace with Christ, also that our family heals from this tragedy with the help of the Lord.

3am....you realize that life is so different then that in your dreams.  RA/ Raynalds/ Fibro pain is the worst.  Feeling like the bed and the sheets are weights that hold you down is the absolute hell. Finding the spoons to live each day is the toughest job that we face.  We live our lives trying to smile through the pain, but there are times that it just catches up to us and beats us to bits.  Being strong all of the time is exhausting.  I've lived with this for so long that the hinges to this old mask need to be replaced.  People are starting to notice the facade that encompasses my living nightmare.  I thank the Lord for another day above the roses, but I just wish that my days could be less filled with thorns and instead the sweet aroma of  fresh cut flowers. 

It's all downhill from here.....

For centuries now we have all heard the phrase "it's all down  hill from here...", but what happens when that phrase becomes your fate? What happens when your "down hill is in your prime years? Today someone stated that from birth to 30, we as humans are at our peak.....This is not true for a Spoonie.  Spoonies are deprived of normalcy.  Deprived of the chance to have the luxuries that typical adults have.  Returning to normal is a foreign concept that we can only relive in our dreams.  Although, there are people who see a Spoonie, and actually have no clue what is actually going on inside of our bodies.  We ache, we cry, we suffer with the mundane activities that others do so easily.  I know I should not have been so sensitive when that comment was said, but it did hit me hard.  It did because I am supposed to be in my prime, but instead I am fighting through what are supposed to be the best years of my life.  The only comfort I have, is knowing that this fight doesn't have to last forever.  I have hope in the fact that this isn't the end, and that my life is just blur when compared to what the Lord has in store for me.  

Modern technologies aren’t all they’re cracked up to be.

Age, modern technologies and medicines, recent advances in trying to find a cure for this disease that keeps rearing it’s ugly head.  We are trying to merely survive in this journey.  I think that merely surviving is not enough, but what other choice do we have.  As I get older, I've learned that happiness is in the small stuff. The small victories that I conquer become the highlight of my week. Recently, I had shoulder surgery, and I never thought that I would be saying this, but I’m still trying to recover. The older I get, the more my body reminds me that it is not easy to bounce back anymore. Now, the disease is spreading to other parts of my body. Disappointment has set in. All of the information Ive read is starting to come true, so now I have to remind myself that my hope is found in the Lord. I watched a movie the other day called “The Case for Christ”, and it went into detail about Christ’s body & suffering during the crucifixion. In retrospect, the suffering that I am experiencing is nothing compared to what Christ had to go through during those hours. Romans 8 reminds us that our suffering is nothing compared to Christ’s suffering.  His body was mutilated, broken, bloodied, bruised....all for me....all for us.  The only thing that I can do is pray that the earthly suffering doesn't steal our focus from what really matters....being His disciple. 

When the glass slipper drops into a million pieces...

It seems that every time I go to the doctor, I come out with a new autoimmune diagnosis. Frustration, anger, pain, and betrayal. Just a few emotions that rise to the surface when I think about how this body has gotten the better of me over the past decade. I constantly have to be “on my game”, but even then, I am bested by fate. When I hear of people who are at the losing end of this battle, I thank God that I haven’t made it thus far.  Realizing limitations and being comfortable to set your own standards are key.  But, rheumatoid diseases aren't so forgiving all of the time.  They demand to be heard, seen, and felt.  They are like our own personal demons that we have to battle each moment of every day.  The most positive part of the story is that Jesus reminds us that we are His creatures and we are wonderfully and perfectly made.  Our earthly bodies are just a temporary vessel, so it doesn't matter what this life brings us, in time we will shed this skin. 

Kindness is free, share a little with everyone you meet!

Kindness, patience, joy, and love make up some of the values that we aim to teach our children.  We as parents try to make sure that they grow into respectable humans with core values that are rooted in Christ.  But, what happens when you fight 24/7/365 within yourself? When the struggles deep inside are too much to bear? Is it still possible to show those values? We are called to "clothe"ourselves in these values and forgive our neighbors and enemies.  Sometimes the enemy is our own immune system.  As a fellow spoonie, I can say that faking a smile is the norm.  Helping others in order to escape the pain brings a satisfaction that only lasts for so long.  But maybe that's what Jesus meant when He said that we should love unconditionally.  The hope of a better tomorrow is our driving force.  We give all of ourselves in everything that we set out to do, knowing that later on we will pay the price of horrible undeniable pain.  In reality, what is my earthly pain compared to the pain that Jesus suffered during His time on the cross.  And when we look closely at that lesson, even in death, suffering, and the worst pain imaginable, Jesus still showed kindness, patience, joy, and above all LOVE.  So, who are we that we cannot put our best foot forward to do the same?

When I was young....

As I get older I sit back and compare my life to when I was younger. Things were different....so innocent and pure. As my husband and I drive past the river, I recall many trips down the Nantahala. I was what some might consider a "river rat". I loved rafting, but oh how the rapids have changed! Now if offered the opportunity to ride the Nantahala I would not only be immobile for days, but I would probably die of hyperthermia after two minutes in the water.  Not to mention the problem the sun and I now have with each other. That in itself is a whole other post! Let's see, what's next...food! I can remember eating ANYTHING I wanted to. Now, before food can even touch my lips I have to take meds to protect my stomach! And even then it doesn't always work. RA has made my stomach lining so bad that I am surprised that I can eat at all. Ok, next subject before I get sad and have to go bake....which then goes back to food in my stomach. Energy! I remember having energy for days. I mean literally, DAYS. I would sleep on occasion and be perfectly fine. Well, not anymore. Now it's a toss up between  pain insomnia (which is totally different from regular insomnia ), and complete and utter exhaustion that keeps me bed ridden. No happy medium. But then again it's autoimmune, who said anything about happiness! Lastly, perspective. My perspective had changed. I now see that this isn't going away. This isn't going to be able to be hidden away in some deep dark part of me and never resurface. My disease is only getting worse. It's evolving into a beautiful monster that will one day consume me. When I was young I thought myself to be invincible. Now I know that to be untrue. It is every facet of RA/Fibro/ Raynauds/ TMJ/ Rosacea that is invincible. I am just a simple pawn on the board. But, the beauty of a simple pawn is that, if played correctly, I can ultimately be a Queen.