Saturday, September 15, 2012

A Little Glimpse of Carrie

Finally, the Mid-South Lupus Foundation is having a Lupus walk in my hometown!!!  I am super excited, and now I need your help!!  I have been living with this awful disease since February 2008. 

Here is how it all began....

 I had no clue what was wrong with me.  My pain began in my fingers...I had a constant aching...almost like arthritis, I guess.  Then I was unable to make a hurt so bad I could not close my hand.  I thought maybe I was sleeping funny because it hurt worse in the mornings, so I was very careful with the placement of my hands at night..That didn't help...slowly the pain moved to my wrists, then all the way up my arm to my elbows and shoulders...Eventually, it moved to my hips.  With each movement it felt like my bones were going to snap, and sometimes it sounded like it too..

I was a single Mom, working full time...I still went to work, and I still fulfilled my Mom duties, but inside I wanted to die.  It was like nothing I had ever experienced before.  I didn't talk about it much with family knew that something was wrong with my hands, and that's about all I shared with them.  I was very scared, and felt very alone.  Once it got to the point where I could not do everyday things such as showering myself, or fixing my hair...even putting my seat belt on, or opening a can...I could barely walk, and could not lift my arms above my waist at this point...I knew that something was terribly wrong.  I lived this way for three months.  When I was at home I layed in bed and cried, and my sweet son would have to help take care of me.  He was only 8 at the time, and he was scared too, although I kept a strong face for him, and never told him how I really felt.  He was so young, and I did not want to frighten him, but clearly he knew that something was different, and he helped as much as he could.  So, I finally decided I had to go to the doctor. Enough was enough... After describing my symptoms they thought it sounded a lot like Rheumatoid Arthritis, and did a ton of blood work.  A week later my doctor called me, and I knew right off that something was wrong...because I've never had a doctor call me after home.  I recall the sound of her voice, and I immediately sat down at my kitchen table.  I knew it was bad news.  She explained to me that my blood work showed that I had full blown Lupus.  I had heard of it before, but I had no idea what it was.  I remained calm, and listened to everything she said..I even wrote down a few notes..  She said it is a very hard disease to diagnose, and that she even had them run the test again to be sure, and it was sure... I had Lupus.  I wanted to cry, and as soon as I hung up the phone I sobbed uncontrollably.  I was scared!  I had a disease...a real 30 years old...I had always been healthy, and active, and now I have a freaking disease!!  I was angry, I was sad, I hated the world...I wanted to know why me!  I remember calling my Mom and Dad and telling them...then I called my boyfriend to tell him...I told a few close friends...I had difficulties dealing with having an actual I did not want to discuss it much at all.  I had to deal with it before I was ready to talk about it at any great length.  The following day my doctor called, and had found a specialist for me to see. Within a week I was in Nashville visiting my new Rheumatologist...Rheuma-what?  This was all so confusing for me...just three months ago I was a normal 30 year old healthy person, and now I'm sitting in a specialists office.??  By this point I was scared, and I wanted my Mom to be with me everywhere I went. She was very supportive, and I'm sure just as scared as I was.  Long story short, I got on a treatment plan, I took the moon face...then the moon I called it.  I took a chemo type treatment once a week, I took two other types of pills...I was sick from the medicine, on treatment days I could not stay awake, and would not "recover" until a few days later...just in time to do the treatment again.   My hair would fall out in clumps, I gained an excessive amount of weight, I could not be in the sun for more than 10 minutes without my skin burning like acid was poured on me, I hated to look at the person I no longer recognized in the mirror...I became extremely depressed and reclusive.  

Overtime....almost a year.. my symptoms of the disease slowly subsided.  I never did feel normal, normal, but I could function.  So, the boyfriend left me because he did not want to be with someone that had a disease...and he told me some other I was not pretty anymore, and I had gained too much weight...and other things that I will not share, but basically it was his loss...who needs a guy like that?  I never gave it a second thought.  He was a super creep..I totally prayed for him!!  

As more time went on I began to feel more and more like myself...a few months later I met Kyle.  On our first date we discussed Lupus...(romantic, huh) He needed to know what he would be getting into if we began a relationship..He was extremely supportive, he began to read a lot about the disease, and I did a fairly decent job at educating my friends and family as well.  Kyle made it very clear from the beginning that Lupus was not going to scare him away, and that he would always support me and be there when I needed help.  He truly is an amazing man!!  After dating Kyle for about 9 months we got engaged...June 2009...and we planned to marry the following Spring.  

In December 2009 I went to the I did every three blood work showed that my disease was in remission.  My Lupus was completely inactive....Wooo Hoooo!!  I was the happiest person on the planet!  I cried, I laughed, I hugged my doctor...he laughed...I hugged the nurses, and the girls at the front was truly a magnificent day!!  I called every person close to me on the way home to share my good months went on, and I still felt good...planned my wedding...the doctor wanted me to stay on my medications...even the treatment...until after my wedding..I was bummed that I would look like a swollen person with thin hair at my wedding.  I mostly worried about not being in pain, so I could enjoy my big day....he did not want me to be sick on my wedding day.  I love my doctor, by the way!!  

A week after our honeymoon I went to see him again, and he stopped the treatment, and dropped me down to only taking one pill twice a day with a small amount of steroids...By my next appointment I was able to completely stop taking the Prednisone, and still now I only take one medication twice a day, and I am still in remission.  My life is amazing, I feel like me again...I still have to be careful about being in the sun...I have to wear sun screen with at least an SPF of 75 anytime I leave my house, I have to choose wisely the foods I put into my mouth, I exercise to keep my body and heart healthy...I removed myself from negative relationships, including a few friendships, and I always try to only place myself in positive situations...stress is one of the number one causes of Lupus, if you've ever wondered why I seem so happy all the time, and why I tell myself I'm awesome every day, and laugh at life...the good and the bad...if I have a bad day...I shake it off...or drink it I have had bad days before...and this, my friends, is not a bad day... I need that reminder..the reminder that I am a survivor...I overcame something that many people struggle with every day..many people die from every day, or take their own life because they can no longer live with it every day...I know how those people feel...I want to help people like me, people that think that their life will never be the won't ever be the same, but it doesn't have to be is a privilege denied to many...I wanted to live...I started marking things off my bucket list about 30 years earlier than I would have...I wanted to see sun rises, catch the biggest fish in the ocean, watch the sun set from the middle of the far out that I couldn't see land...breathe life, dance in the rain..explore the world, jump out of perfectly good airplanes, ride in a hot air balloon...just be adventurous, and do things I would have never done before...Lupus gave me hope for my opened my eyes to the importance of, and having amazing friends and a beautiful does not define who I was, or who I am...I have Lupus, but Lupus does not have will never have me.  I am in control of my life now, and knowing what it feels like to hit rock bottom...I like the view from the top much better, and I thank God for it every single day!!!

Now that you know my story, please donate to the Lupus Foundation so people like me can have hope that a cure will be found someday, or the hope that someone you love will never have to struggle like I and many others have...Come out on October 6th and walk a mile in my shoes...walk with me, love me, celebrate with me, hug me, cry with me, and show your support!!! This is a big deal to me, and it will mean so much to me to have you by my side...

Thank you, from the bottom of my heart!!



  1. You are inspirational!!!! I <3 you!!! So happy you are doing wonderfully!!

  2. I'm so glad you are in my life!!! What a truly inspirational story my lovely Carrie!!! You know I'll be on Team Kennedy in my heart on the 6th and I wish I could be there for you but we'll be thinking of you and the team !!!! See you Thursday night for your birthday!! love, sonnie