My Heart is Broken
Many of you may not realize, I have been living deep in the depths of despair off and on for the past year. After losing my brother, I clawed to keep my head above the ground.
In December, the most amazing thing happened to me. I found Peppermint Patty. Bringing her home was the happiest day of my life!
But she was very unhappy here and though we tried desperately for months to resolve the situation, I lost her. Because I was already dealing with the loss of my brother and had no idea this was going to happen, along with my mom battling lung cancer, my sister breast cancer, my own daily struggles and several other things, I was thrown into a pit. She is a part of my soul. I love her beyond words.
I share these things for 3 reasons:
1) Not to ask for pity, but to be honest about what I am going through and ask for prayer.
2) To voice my frustration with the reality of isolation due to my illness and chemical injury. I am unable to attend church or go to many (if any) functions and miss out on holidays. The hardest part is not having that fellowship time with friend and family.
3) To encourage change! It doesn’t have to be this way! We have steps that are simple for most to make it possible for me to be a part of the lives of others. Don’t give up on me. Don’t give up on anyone living with illness and chemical injury.
A lot of people have told me to stay strong. With the grace of God, I have been a very strong person and have been through much more than people know. I will get there.
A special Thank You to Kelley Harding for taking such great care of Peppermint Patty and making her a very happy baby.
Lyrics “My Heart is Broken” by Evanescence:
I will wander until the end of time
Torn away from you
I pulled away to face the pain
I close my eyes and drift away
Over the field
That I will never find a way
to hear my soul
And I will wander until the end of time
Torn away from you
My heart is broken
Sweet dreams my dark angel
Deliver us from sorrow’s hold
From my heart, heart
I can’t go on living this way
I can’t go back the way I came, change of this field
That I will never find the way
to hear my soul
And I will wander until the end of the time
Half alive without you
My heart is broken
Sweet dreams my dark angel
Deliver us
Change
Open your eyes to the light
I’ve been denying so long
Oh so long
Say goodbye, goodbye
My heart is broken
Release me, I can’t hold on
Deliver us
My heart is broken
Sweet dreams my dark angel
Deliver us
My heart is broken
Sweet dreams my dark angel
Deliver us from sorrow’s hold
May 8, 2013 @ 7:42 pm
I don’t remember how I came across to your story or blog. But I do know it is God at work. I too have Systemic Scleroderma as well as 10 additional auto immune diseases. I live with chronic pain that even with a spinal stimulator, fentanyl pain patch and high powered oral pain meds it is still horrible. The scleroderma has wiped out my digestive system and my reflux is one of the worst cases the University of Minnesota has seen. Last April they tried gastric bypass to stop the reflux and it worked for 10 months and then returned. I just had a feeding tube put in as am malnourished and to see if it will tone down the reflux attacks. The attacks have me aspirating into my lungs and is also damaging my throat. I am now getting reflux attacks from my gastric juices and they aren’t even brought on by any food intake.
I have lost 2 close online friends who had sclero in the last 6 months. The first one had her digestive artery get blocked and she went into a coma and died 5 days later. The other friend aspirated into her lungs and ended up in ICU and her organs swelled up and she passed away. Both of these women had systemic sclero but didn’t have a lot of issues but this disease apparently can turn on a dime and take us out.
The reason I am sharing all of this is to (1) let you know you are not alone in this; (2) that sharing this disease and what it does to you with other people who are in your shoes helps so much in just letting you know it isn’t all in your head; and (3) venting is so necessary.
I honestly don’t know how I would get thru my days if I didn’t have my faith. I don’t know how people go thru this without faith. I am so very blessed to be a member of a church where my Pastor and all of the members are so incredible. If I am unable to get to church my Pastor brings me communion. I also have a Stephen Minester who is a member who has had training and she calls me; she visits me; she listens to me; and she prays with me and for me.
So why all of this background and information……….because I SO UNDERSTAND YOU AND WHAT YOU ARE GOING THROUGH! I am here for you! I am available any time of the day or night if you need to talk, cry, scream or whatever you need. This is a horrible disease. It has robbed me of so much. It took me a very long year to get diagnosed. I was told I had MS, Lou Gehrig’ s, Post-Polio, Chronic Fatigue, and “it’s all in my head”. When I finally got told it was Scleroderma I was by myself as my husband had run out of sick days with all of the appointments we had been running to. The doctor told me that it is considered fatal and my life expectancy was 5-10 years. I then had another appointment with an oncologist who told me that I have marker in my blood indicating I will get lymphoma so every 6 months I get tested to see if it’s “here”. So I got the double whammy and was with a friend who took me to the appointment and I then had a 3 hour drive home. So I am scared as to how quick this disease can turn and I am gone. I know I will be in heaven and in no more pain and I am not afraid in that respect to die.
I am sure you hear all of the time too on how good we look. They mean well but it makes you feel like they don’t believe that I am really sick. I also so believe in the power of prayer. With this last surgery I was to have the feeding tube put in down through my esophagus and it would go into my old stomach and down to my lower intestine. It was to be an extremely painful surgery and I would not be able to eat regular food again but for very rare occasions. I was so depressed by this. Well the surgical team on Friday didn’t get scheduled so my surgery was postponed to Monday. I and my family were all so upset by this but there wasn’t anything we could do about it. So on Monday it was a different surgical team and they looked at all of my tests and decided and recommended to go in through my stomach and not route it down my lower intestine. This also meant I would be able to eat!!! This truly was a miracle to me and was definitely due to the power of prayer. I was on so many prayer chains and God certainly heard the thunderous prayers from so many people.
YOU ARE NOT ALONE!! You are dealing with so much and it breaks my heart that you feel so isolated. The words at the end of your message are heartbreaking. I am here for you and I will most definitely be praying for you. God is there for you and when you have those feelings of despair remember that it’s the devil at work trying to make you feel that way.
I apologize if I have possibly bored you or over-stepped myself in all of this. I just thought it might help you to know there is someone out here that can totally relate to you and understands.
God’s blessings to you and I am sending you a huge hug.
Peggy Loween
ploween@yahoo.com