Sunday, November 4, 2012

Update for November: Please Enjoy!

I am sitting up tonight watching television and thinking. I slept for a long time today, so that is why I'm up tonight. My body has been very weak. Most of you reading this know what I’m facing.

Sometimes I really feel like I repeat myself, but for the sake of those who don’t always read my blog, or if you just have forgotten, I'll update you!! :)

I currently have a feeding tube called an NJ tube. It goes through my stomach, into my small intestines and bypasses my stomach. Every time I eat or attempt to even drink heavy liquids, I vomit or feel like I have to vomit. So my doctors, who are located in Baltimore at John’s Hopkins Hospital, basically had installed a gastric pacemaker, which worked initially for several months.

I noticed in late July that the pacemaker wasn’t working well, and since then, it’s not been working much at all. Now it does help some with the nausea, but not all of the time. We’re not sure why it’s stopped working. The doctors have adjusted it, and I’ve followed most of the guidelines. Sometimes I’m weak and I’ll try to eat a bit, but it usually is disastrous when that does happen.

So I got a temporary feeding tube in September that goes through my nose and into the intestines to give my tummy a rest. They took that one out and put another one on the other side of my face a few weeks ago and I’ll have to have that one until the end of November. I’m going back to Hopkins then, and the doctors will be making some serious decisions as to how to proceed.

I have several options. There are some experimental procedures that they are thinking of. I would be willing to do anything for my doctors. If I can help someone in the long run by doing something for research that may or may not help is fine with me, and it’s a plus if it will help me in the process.

They are talking about maybe putting a new G/J tube in me that may allow me to eat (and even though it’s kinda gross), I could open a hole in my stomach and vent and release the gasses so that if I were able to eat maybe a little bit, I wouldn’t be as sick. And when I’m too sick, I’d have a permanent feeding tube so that I wouldn’t end in the hospital. That would be ideal. But it’s a surgery and quite a life adjustment. I’d have more tubes. They've also mentioned some kind of new stent too...not sure as to what that would do, but it's a thought anyway.

I’ve lost 100 pounds total and I’m losing more because I’m not getting very nourished as anything I take in my tube, I get really sick. Resisting foods is so hard, so I’m asking you to pray for God’s willpower and that I can say no to what I should say no to! I NEED your prayers. Please pray that I can resist food. I love coffee, and even the creamer makes me sick. I just get so sick from anything anymore. Pray I'll have clear guidance. I need it more than ever.

So that’s what’s happening with me healthwise. I go back to Maryland on Nov. 28th and I see my pancreas doctor and my stomach doctor on the 29th. It will surprise me if they DON’T want to do surgery. I’m expecting that. Just pray for wisdom, guidance and for peace for both Kevin and I.

It’s been emotional for me in many ways. Emotional because I feel very disheveled right now. I feel like my home is with Kevin, but I’m uprooted because of my condition, and I’m so VERY lucky and blessed to have parents who love me and take care of me when I’m in Maryland.

But I also have fear and frustration as my parents and the people I love so much are getting older (I’m sure they’ll appreciate me saying that), and the last thing I want to be is a burden. I don’t want to be a burden since it’s such a long drive there and back from Virginia where my parents live. It’s also hard being in and out of the hospital and not knowing what’s going to happen. Of course I feel loved and everyone tells me how happy they are for me to be there and that I could stay with them any time…but it’s just the way I feel. I just don’t like being the cause of stress. I wish all of this was normal but I also wouldn’t change the life lessons that I’ve learned by going through this journey with my health.

Speaking about this journey, I really have been reflecting so much lately. I go through seasons in life, and I think over the past few months, I have really been reflective about life and friendships and about the strength and resilience of the human spirit. What I mean is that I think we are so much stronger than we give ourselves credit for. I read the greatest quote tonight and I wanted to share it with you:

“You’re braver than you believe, and stronger than you seem, and smarter than you think.” –A.A. Milne
I don’t know much about A.A. Milne except that he wrote great children's poems and is most popular for writing Winnie the Pooh. He apparently was a great playwright and author. I just absolutely loved the quote that he spoke.

It’s true. So many times we don’t try things because we don’t think we can do it. We don’t believe we’re tough enough, and we surely can’t make decisions because we lack the knowledge.

I guess that’s what being ill has taught me. There have been moments when I surely thought I couldn’t make it through a 4-hour painful test, and I wouldn’t make it if I threw up for one more second. I just wasn’t brave enough.

But somehow I was. What some may think is just the human spirit, I know is God. Our God is so strong. He truly is the picture of strength. Of absolute and total power. When we have no reservoir of strength or power left, somehow as a child of His, we can tap into His source of power and it's like we can tackle what we face.

I didn’t think I was smart enough to fix a problem or make decisions with Kevin that could alter our future and my health, but we were.

We did it, thanks to prayers from others, God imparted His wisdom...the ability to do something with His guidance and protection.

And I didn’t give myself enough credit that I could do anything. I truly believe that's how Satan wants us to feel. Defeated and weak and frail. All I had to do was cling to those words in the Bible that say so simply yet so profoundly, “I can do all things through Christ who strengthens me.” I surely underestimated my strength, but more importantly, the strength of the one who lives in me.

I am that strong in Christ.

A.A. Milne was right. We are braver, we are stronger, and we are smarter than we think. We are made in the image of God and He is and has been all of those things from the beginning of time. Strong, Brave and Smart. The good thing is that when we are His child, we get to tap into that strength daily. Not a second we have to walk alone. Not not one second do we have to feel weak. No one moment should we believe the lie that God doesn't enable His children to have His supernatural strength.

Now, I can't know what the future holds, but I am trying to journal every day and I'm starting a new blog about things and I'll keep this one up too. It touches me when people read and leave comments or they'll say their friend read it. It means so much to me.

Don't forget you're brave, your strong and you're smarter than you give yourself credit for. God says so. I know that she's going to kill me for saying this, but maybe she won't read it any way and I won't have to hear her get mad at me...One of the people I admire so much because I know she didn't know how strong God was in her is my sister in law Shellye. She's a really strong and Godly woman. She's raised two really great kids who love God and Shellye is strong beyond what I ever imagined. I look at her and I see such strength and grace. She'd be the first to tell you, too, that it's all God, and she's pretty strong. I love watching people chose God when they could have chosen a path of destruction and anger.

God really is good, and I am forever going to cling to his nail-scarred hands. He chose a path of pain for me, and I can endure the barbs of what Satan throws my way.

Thank you for reading. You are so special to me!

Love in Christ always,

Ami :)


  1. I have tried to leave a comment 3 times and it disappears or I'm taken to another page to create a profile...I just can't figure out how to operate on a Blog. I just don't know enough. I am still trying to figure out facebook.

    I am new to this area so I don't know anyone except you Ami who would ever write to me. My own kids in MI don't email me or write or call ever.

    Your testimony is inspiring and I love you very much. I have been at COTR for several months now and you were in Marilyn and you are the only one who has really extended an offer of a personal relationship. I truly ask God to bless you and I always pray for you. I know you pray for me.

    I just am not finding any way to really make friends. I make aquaints, and try real hard to remember their names but only you are my friend. No that's not quite right, I think that Terry (he's one of the greeters is my friend). He has prayed with me when I felt so alone and couldn't stop crying on day.
    You have 3 churches you have relationships in. I do still have a relationship with my Pastor from MI. He is my Hero. He has taught me so much about God and the Bible and I've been so hungry for all that I could learn. I do believe that God uses the times we are hurting and in pain and sorrow to develop up in character and probably he is doing much more that we don't see. I truly love you Ami and I believe you are a gift to from God. You have such a positive outlook on life, that I want to emulate. It is going to be a lot of work and I know I need God working within me to change me into the person he desires for me to me.

  2. Ami,I love you so much and so does mom.We are always praying for you.I owe you a letter.I am bad about writting,getting back into my hobbies,still is hard after my Dad died.I still miss him soooooooooooo much that it still hurts,but know hes in a better place.Just know I know your a strong and brave person and we love you!!!!!!!