1 year ago

It'll be one year on Tuesday when my world came crashing down around me. When I lost my grandpa. Even now as I sit here trying to figure out what to say, I don't have the words to express the accute loss I feel. All I know is that part of me died the day my grandpa died. He was my grandpa and I was his Babe. We had been insepparable. From the moment I was born, I had captured his heart. I was his Babe. His little girl.

Last January when he had went into the hospital this last time, I knew he wouldn't be going home again. That he wouldn't be around much longer. I prayed I was wrong. I wanted to be wrong so badly. 'Cause if I was right, that meant that I would be losing him. Something I had feared happening since he moved away when I was a little girl. I was able to talk to him over the weekend when he was in the hospital. Not for very long, but long enough to let him know that I loved him. The very last thing that he told me was, "I love you, Babe." Then on Monday my world came crashing down around me. My dad had woken me up to tell me that grandpa had just died. I sat frozen. Praying that this was a horrible nightmare. But it wasn't. Grandpa was gone. And just like that everything I had ever known was changed. Gone. The world was a vast and empty place all of a sudden. Scary. And the one person I wanted, was gone. And my heart broke.

It was a tough year last year. Filled with loss and pain. It was all about taking one step forward and two steps back. I would fall, and try to pick myself up again. Some days it was easier than others. It was hard 'cause there were so many days when I would hear his voice. Or his laugh. Would give anything to see his smile. But he was gone. And my heart would break a little more. Some days I can smile when I think of him. And the pain isn't so bad. Other days, all I can do is weep from the horrible loss I feel. Grieve over the hole in my heart. Yes, I'm glad he's in a better place and not suffering anymore, but now he's gone and I'm hurting. Left trying to figure out how to put the pieces of my heart back together again. How to go on without him.

Every day I get up and try to live my life the best I can. Even on the hard days, I do. I go on for him. Showing my grandpa that I won't let lupus beat me. I go on.

So grandpa, I know you're watching over me. Making sure that I'm okay. And when it comes to losing you, I'm not okay. I miss you terribly. I miss the sound of your voice. Your laugh. Hearing you call me your Babe. My heart is broken, and a huge piece is missing when you left. But I know I'll see you again. Until I do, I'll have some rough days along with good days. And one day when I think of you, it won't hurt as much as it does now. The pain won't be as raw. I'll think of the happy memories shared with you, and smile. Oh, I miss you grandpa. So very much. And love you even more. Your little girl loves you. I'll always be your Babe.

Vulnerability

I chose the vulnerability card yesterday from DrSnit, and I was trying to think of what it means to me to be vulnerable. And this is what I came up with.

I'm vulnerable every time I put my heart on the line and let someone in my life. When I open my heart to love another and be loved in return.

Instead of closing myself off from the hurt and pain of losing someone I love, I choose to continue to love every day. I'm not gonna run from love, I'm gonna embrace it. I choose to let it grow inside of me. Letting it consume every part of me.

Shutting myself off from the world would be so easy to do after losing someone I love, and after being mistreated by people I love. But I refuse to do that. That's not a way to live life. Closed off from people so I won't feel the pain of being rejected. So I won't feel the horrible pain of losing a loved one again.

I choose love. 'Cause at the end of the day, that's all anyone really wants. To know that they are loved. That someone somewhere loves them.

I'm vulnerable by loving.

Journal Entries

Today I was going through my dresser, and I stumbled across a couple of my journals. One of them just so happened to be the one I was writing in the year I got sick. And my whole world went crumbling around me. It was tough reading through it. Seeing all the different posts where I was struggling and felt so alone as my friends and family deserted me. All because I was sick. It was really tough. What hurt worse was knowing how little my life has changed from then until now. Oh sure, my family's lives have changed. And so have my friends', who've actually stuck around. The only thing that changes for me though is every year that passes, is another year that I'm still sick. Another year where I've felt cheated and alone. Another year where my dreams have been put on hold. And it royally sucks.

Anyway, I thought I would post a couple of my entries. The first one is from the day I got diagnosed with Lupus. And then from the following days after. Normally I would never consider doing this, but I know a couple of my girls' have recentlly been diagnosed w/Lupus. One was diagnosed last year, and then another in January. Which oddly enough was when I was diagnosed. Only in 03'. I thought I would share my feelings on what it was like for me after my diagnosis. So here it goes.

1-23-03
Today I found out the results of the lab work I had done up the week before. I wasn't really expecting to hear anything. I figured it would be just like it always has been. Some things would be elevated, but she wouldn't know why or what would be causing it. Boy was I wrong. The tests came back positive for lupus.

I was stunned. I didn't know what to make of it. I still don't. Hours later I'm still in shock. I'm so confused about everything. It's all so sureal. It's like a nightmare I can't wake up from. I called grandpa as soon as I got home. He was relieved that I finally found something out, but devastated that it had to be Lupus. I'm so confused right now. I don't know what to make of anything right now.

1-24-03
Today has been an emotional day for me. My life seems to have been turned upside down over yesterday's news. On and off I've been crying uncontrollably over the time that has been lost, and from realizing that I'll never be like I once was. Full of life and energy. I keep thinking that this has to be some horrible nightmare that I can't wake up from. But it's not. I've also been wondering why this has happened to me. Why is it that I've always gotten sick easier than Chrissy or my cousins'? It's not fair. I wonder if I brought this on myself some how, like some of my extended family have suggested. Or other morons. Then I remember that I can't control what's in my blood or the spot at the base of my spine. I didn't make myself sick. It just happened. And it's not fair.

I'm terrified that I'm going to end up dying from this, like Claire ended up dying from her illnesses'. Needless to say that hasn't helped any. I'm so scared and I feel completely alone right now.

Life is anything but fair. I've had so many plans for my life, and now I'm not sure I'll be able to do them. Sure I'll still have a life to do things, but I don't know when I'm going to be able to live it again. Especially since it will be 4 years since I've been sick soon. And I'm not sure when I'll be well enough to start living my life again. Especially since I've been waiting for 4 years now.

1-26-03
I'm not handling this new turn of events very well at all. I keep thinking of everything I've lost. How nothing will ever be the same again. Nothing. I keep wishing that this was a nightmare. Instead this is my life. This is all so sureal. I don't know what to think or feel anymore. I'm in shock and disbelief over what's happened. It's as if everything I've ever known is gone. Ripped away from me. Things will never be the same again, and that's really hard to deal with.

I'm just so confused about everything. It's as if I'm drowning and I don't know which way is up. I don't know how to get out of this nightmare. Or how I got into it.

* * *

Okay, so there you have it. A few of my journal entries. My thoughts after my world turned upside down. It took a long time to grasp what was happening to me. To decide that I wasn't going to be a victim by Lupus or any of the other diseases that I have. But with God's help and my family's, and now by my new Lupie sisters', I've been given the strength to not only survive, but fight. Fight for my dreams and my life.

The one thing that was repeated over and over throughout my journals, was the loss of hope. The loss of feeling like I would ever belong. Or ever have a life again. Earlier I had said that my life hadn't changed much from then until now. I was wrong. I've grown as a woman. I've gotten stronger. I know who I am. I'm not just a scared 21yr old woman any more. Feeling completely hopeless. Like my life was over. I'm a 33yr old woman who is going to take life by the horns and not quit until my dreams come true. My life may not have turned out like I had envisioned, but I'm learning to adjust. To adapt. I'm a fighter. And some way, some how, I'm going to kick lupus' butt. Even if its only by getting up every day. It's another day that it didn't beat me.

In honor of my Lupie butterfly's, this butterfly is going to RAWR

xoxoxx

Shell of the Woman I once Was

The past couple of weeks have been tough on me. Well, longer than that actually. Ever since earlier this year when I found out I would be moving again, I've been going through my things packed away in the basement. It's been tougher than I thought. I see pieces of the woman I used to be throughout my boxes and bins. Old pictures of me. And various other things. Seeing pictures of myself is the hardest though. Seeing who I was before I got sick 11 years ago. Before this intruder took over my body.

The pictures from the cruise my sister and I were on, in January of 99' is the hardest to look at. That's where the wound runs deep. It was the last big thing I did before my world got turned upside down that March. Before my body turned against me.

I see that woman in the pictures and my heart aches. 'Cause I'm not her anymore. I'm not that woman who's alive and vibrant. Life radiating out of her. So happy. You look in my eyes and they were alive. They popped. I enjoyed life and it showed.

Its difficult to find a picture where I wasn't smiling. My face beaming. Oh, I do have pictures where I'm not smiling. For instance the photo shoot I had done of me by a lake. And there are others. But even if I wasn't smiling, you could see life in my eyes. They spoke volumes when words weren't needed.

But after I got sick, it was as if someone turned the light off in me. I changed. I was no longer vibrant and alive. I felt like death, and it showed. I didn't have a reason to smile anymore. And if I did, it certainly didn't reach my eyes. When you looked in my eyes, you saw defeat. Fear. Loneliness. I had given up on life, since so many others had given up on me.

I'd look at the reflection in the mirror and wonder who that woman was staring back at me. There was no life in my eyes. No joy. Just emptiness. I didn't recognize myself anymore. I had changed. And I didn't like this new me. I hated this woman staring back. Because the moment she took over, I was gone. Just like that. It wasn't a gradual thing. I didn't slowly fade away over time. It was immediate. One minute I'm there, and then the next I was gone. And all I wanted was my life back. To be the woman I once was again. I wanted it all the way it was. I wanted my job back. My friends. My family. My life.

As the months turned into years, I just didn't care anymore. I didn't care if I lived or died. If one day I just wasted away. For those first couple of years, I rarely left the house. The only time I did was for doctors' appointments, numerous trips to the ER, or for more tests. Occasionally to get together with a family member. I had given up. Quite a few doctors' had given up on me, so I figured I might as well too. What was the point of fighting anymore?

On year three a friend of the family pretty much slapped me upside the head and said I needed to fight. I needed to live my life again. I couldn't stay locked away in my room anymore. I needed to move to a different location. Even if it was as far as the living room. But I needed to see more than the four walls in my bedroom. I needed to find a reason to live. To get up everyday. I needed to dream again.

Slowly I started to fight for my life again. Started to care what happened to me. Having two puppies to take care of gave me a reason to get up everyday. I had someone I needed to take care of. Who needed me. And I found where I needed them too. They made me laugh. Smile. They comforted me when I was sad. Sat in my lap when I cried. Laid next to me in bed when I was hurting.

Even inspite of trying to live again, go out with family or friends just for a little while, I didn't like this new me. Couldn't get over the fact that I wasn't the same anymore. For the longest time I didn't like looking at pictures of this new me. Hated it. Just because I didn't look like myself anymore. I didn't see life in my eyes. Not to mention it took a lot to get me to smile. And when I did, it never reached my eyes. And I hated it. It made me sad. Made my heart break for something that I could no longer have. My life back. I wanted ME back. All I wanted was for this intruder to go away so I could have my body back again. To be the same as I was before. But as the years went on, I realized that it never would be again. That I would never be the same again. And it broke my heart.

I grieve over the life I had. Over the woman I once was. It truly is a death. My death. On March 9th, 1999, I died and an imposter took over. So I grieve over all that I have lost. Cry over the loss of my life. And especially over the woman I once was. I grieve. I ache. And I long for what I can't have with every breath in me. I long to be the woman I was, alive and free, instead of just this shell of the woman I once was.

Tired of being Sick and Tired

Okay, so Sunday I went on a 2 1/2 hour car trip to visit a friend in Rochester. I hadn't seen him in months, so it would be nice to catch up. I found out Fri or Sat that I would be going down to see him. Mind you, car trips never bothered me before I got sick. I rather enjoyed them. After getting sick 11yrs ago, I'm miserable after being in the car for half an hour. And anything over an hour usually wipes me out for a few days. Sometimes a week. So when I found out that I would be going to visit a friend Sunday, I immediately felt tired and sapped of all energy. Dreading what was coming. Yes, it was good visiting with my friend Sunday, but the drive was as bad as I expected it to be. Being in the car for a total of 5hours is not my idea of a good time. I was more than ready to get home by the end of it and crash in bed.

Three days later and I'm still paying for Sunday. I'm in pain constantly, exhausted, and miserable. And as much as I want to sleep, I can't. Being in constant pain really messes up your sleep. And pretty much everything else too.

Now, my friend would've understood if I had said no to coming down and seeing him, especially if he knew on what it was going to cost me. But I hate having to say no to everyone when they ask me to do something or go somewhere with them. It gets old really quick. And it certainly doesn't get any easier.

I am just so sick and tired of being sick and tired! I'm tired of having to debate whether or not having some fun one night is going to be worth it for what I'm going to be going thru later. Is 3 days of pain and misery too steep of a price to pay for one night of fun with friends? (And those 3 days can quickly turn into a week) Will it be worth it in the end? Usually its not. Sometimes it is though. Sometimes you just need to go out and have some fun. Try to be normal for a few hours. Normal. I would give anything to be normal again. To be healthy. To not have to question every friggin' decision I make. To not think about the price that I'll pay for a night out with the girls. Instead be able to just go out and have fun. Oh, to be healthy again. To be able to live freely again. No more doctors appointments, tests, more doctor appointments. Followed by still more tests. Which gets old really quick. After 11yrs of living this way, it does NOT get easier. And anyone who says differently is full of it.

So I scream out into this void, "I'm sick and tired of being sick and tired! Sick of it!"

So Blessed

I knew my birthday was going to be tough this year, and I was right. It was so hard knowing grandpa wasn't able to be a part of the day this year. In all of my 33 yrs, my grandpa has always been a part of it. If he wasn't there celebrating with me, he always called. Tears flowed Fri. night knowing the day was coming to a close and I hadn't gotten a phone call from him. I missed hearing his voice. Hearing him call me his Babe. Saying that he loved me. I feel the loss in every area of my life.

So while I was at my lowest, Friday, I went online to try to distract myself. And I got the best gift ever. I found so many wonderful b-day messages from friends. New and old. And from my Lupie girls'. I smiled and I laughed. Something I did very little of during the day. My girls' helped me thru the worst of it. The tears stopped and I was doing better. The sadness and grief lifted. My girls' helped me thru a tough day. I'm so blessed to have such wonderful friends in my life. Pulling for me. Reminding me that I'm a strong woman when life becomes a little too much to handle. My girls' wrap me in a blanket of love and support. They're there comforting me on the bad days and rejoicing with me on the good. Thanks, girls', you're the best!!

I AM BLESSED

Jan. 10th, The Worst Day Ever

Okay, so I'm going to try blogging. Not sure how I'll do, but here it goes. Stepping out of my comfort zone and trying something new.

I thought for sure this year was going to suck after the way it started off. Losing 2 grandparents in a little less than a month. Not my idea of a good time. And then knowing that March 9th would mark the 11th year for me being sick w/Lupus and the other diseases that are running rampant throughout my body. That alone was going to be hard enough to deal with, but then losing 2 loved ones... bad year for sure.

January 10th was the worst day ever. Even worse than all of the painful tests I've been put through over the past 11 years. I lost my grandpa. And with him went pieces of my heart. From the moment that I was born we had been insepparable. I was the first grandchild on my dad's side of the family and a grand-daughter at that. My grandpa had always wanted a daughter. Instead had three boys. From the moment that he held me, I had his heart. I was his Babe and I could do no wrong.

It's so hard remembering what I had and what I've now lost. My eyes burn from the tears threatening to fall. Throat constricting. sigh Oh, I miss him. There hasn't been a day that's gone by where I haven't thought about him. Where I'd think he would love hearing that. I'd go to pick up the phone to call him only to remember that I couldn't. He's not here anymore. And my heart breaks a little more. I would give anything to hear his voice again. To hear him call me his Babe one more time. Be wrapped up in his arms. I would hold on and never let go. But I can't. He's gone. Taking with him pieces of my heart.

So into this void I say, I love you grandpa. I'll always be your Babe. sniff