Will It Ever End?

  Today I feel like throwing myself a pity party.  I mean everyone deserves one every now and then.  I'm just tired of all of it!
  I'm so mad that I have spent the adult half of my life disabled and in pain and alone!  Will I ever meet anyone?  I mean at my age my lifelong dream of having children is over.  But, will I find someone?  Will I ever be functioning again?  Will I have a body that works? A body that looks like I want it to? Not some misshapen lump of ugliness and pain.  Can I ever look at this time and not want to cry and tear my hair out?  All time is now is before RSD and after.  Watching everything around me change and grow and yet I stay the same!  Will I ever meet new friends?  Friends who don't leave when things get hard.
  Okay, so there's my pity party rant.  I do want to say that I have many many good things in my life for which I am truly grateful and appreciative for.  I have a wonderful family, a loyal companion who has truly been instrumental in keeping me sane(my dog), some new friends, good Dr's and God.  I have grown a lot over these years.  But, today I'm just in need of a good rant to the universe.

Pain, Pain, Go Away, Come Again Another Day....

  Sorry it has been so long since I last posted.  Things have been a bit rough.  I'm sure most of you out there can understand and appreciate that.
  I had an appointment last week with a social worker.  And it was a complete disaster!    She said to me that she didn't understand why a strong healthy looking individual needed to be taken care of.  Why is it that people just don't get that RSD is real? It is so hard having a disability that no one can see.  My leg definitely shows signs of RSD but not my abdomen.  The only other outward appearance is the amount of weight I packed on due to medications and inability to move.
 I hate having a disability that's so intense and such a huge ordeal for myself and yet to others it is considered to be fairly unworthy of their time and efforts.  I'm not saying every one, I myself have been blessed with very good doctors.  But, it's just hard sometimes.  Having invisible illnesses is a real challenge for anyone.
  If you have RSD, Chronic Fatigue, Depression, Fibromyalgia, any of these are hard to face because the physical aspect is not there.  You feel as if you are suffering alone.  I know, I've lived through 2 of those.
  But today I say press on.  There are people out there who believe.  There are people who love you!  And with that combination I think anyone can get through it.

8 *#@%ing Years?!

  I recently found out that February 11th is the very day that I had the procedure that caused all my problems.  Someone asked me how I felt knowing this.  And after thinking about it for a few days now I'm afraid I still don't have the answer.   So i thought I would look at my life as if I didn't go to that fateful appointment.
  I would have a degree in dental assisting, it is a fast and easy degree.  I would be living in New York, the city that calls out to my homesick heart.  I would be married to someone wonderful and who devoted.  And kids, I would love to have had kids.  I would have continued on living in a healthy body that worked and would let me work out.  I would have traveled to the 4 corners of the world looking for the answers to the universe.  Hell, maybe I would even have a horse.  So, that's the life I was supposed to have, the life I was heading towards.
   It's so hard to let go of so much.  I don't know if I will ever be able to truly be OK with these dreams not coming true.  I have had so much loss it's hard to even think about happy endings.  Sometimes, with RSD or any chronic illness, you tend to go through waves of good times and bad times.  I seem to be in a real low spot lately. Perhaps after the anniversary things will get better.








I feel sad that it has been so long.  Sad that I have lost so many years of my young adult hood disabled and unable to fulfill my dreams of college, and a family.

Do You Ever Truly Accept?

  So, here I am heading into my 8th year of this trial and right now I'm just filled with sadness.  Sure there has been so many years that I have been angry over this situation but right now I'm just so sad.
  I'm sad because I look at the same walls I have looked at since I was 8 years old.  I'm sad because I don't think the situation will be changing anytime soon.  I'm sad because no matter how hard I try time stops for no one.  I'm sad because I realize now that the dreams I had are just that dreams.
  I know I always sound hopeful at the end, but today I just need to feel sad.

Time Stops For No One

For me I think one of the hardest things ( besides the pain ) is time.  I have had RSD for 8 years now and for me time has stood still since then.  I haven't been able to work, unable to go to school, have much of a social life. But, at the same time the world hasn't stopped for me.  I feel trapped in this little time bubble just watching the world spinning by and as the years go by I swear it feels like the years go by faster.  I see kids that I babysat now have kids of their own, I see my friends having families of their own.  It's so hard to not be bitter sometimes.  I can hope that I will someday soon be a part of the world again.

Things I Hate

Today is not a good day. I hate that my worthless crippled body that doesn't work the way I want it to. I hate my body so much that I have been unable to look into a mirror for the past 8 years. I was a very active person before I developed RSD and it was a crippling blow to suddenly be unable to move much at all.   I hate having to ask people for help with everything.   I hate the fact that my dreams are no longer attainable.  I hate the fact that so many of my friends quietly disappeared from my life.  I hate the pressure that society has pressed onto me, to fit the mold. It's so hard sometimes being alone all day.  That's when the inner demons really come out. 

I get asked all the time "How do you get through such an ordeal?"  Well, as corny as it sounds: one day at a time.  It's too hard to think into the large vast future, when today is hard enough to get through. 

   

I long to be free.  I want to be able to do things on my own again.  I want to be independent not dependent!  I want to look into the future and see that it's one that I want.  I want to find someone.  I want my parents to be proud of me, instead of having to say they have a 35 year old who still has to live at home.  I want to be able to look into the mirror again and not feel disgust.

But, it's just one day at a time......

Today, I will remind myself that I am loved, that I do have friends who care about me, that somehow my life has meaning and purpose, that my parents are as proud of  me and the things I’ve achieved as they are of their other kids, even if they aren’t things the world recognizes. Today, I am trying.  And some days that’s enough.

Dates and Anniversaries

Hello again!  Sorry for the long pause between.  I am looking at my eight year anniversary of RSD this time around.  The last time I had it it took ten years..  So as I look back at these long eight years I am filled with regret, anger and joy.  

The first year of this bout was when I found who my real friends were.  Yet, I was still positive about my disability.  

As the next few years rolled by I started finding myself poked and prodded and  the procedures were endless and unproductive. The RSD spread, up one leg and down the other, then to my abdomen and back.  I found myself sinking further into the abyss.  I started looking at my life as before RSD and after.  When I thought about my life before RSD, I was reminded me of how much I had had going for me and how much I had taken away.  It got to the point that I was so angry and bitter.  

I still am angry.  This was not the life I wanted to have.  Let's face it: nobody wants this life of pain.

 I'm coming to see that it's what you do with the life you have that makes the difference.  I'm 35 and I have not experienced "normal" life at all yet.  And I struggle every day with that.  

But, I am constantly reminding myself that there is so much joy in my life.  I have a home and a family, a dog who follows me everywhere, Dr's who believe me and are committed to helping me.  These truths didn't sink in until I looked for outside help.  I cannot do any of this on my own. And I thank God for being in the trenches with me.