Sunday, June 19, 2011

Another Update :)

It has been a long time since I have posted a blog and I have to apologize. Things have been busy for me, but I thought I would update everyone on things.
I'm going to be honest as I write this blog. I think most of you who read this and follow me really know me and understand what I am going through.
This has been probably the most frustrating and difficult period of my life. I feel so sick all of the time as of late. My pain is so excruciating most of the time. I just spent a week in the hospital because they couldn't get my pain and my pancreatitis under control. I am trying to step down and take less steroids in case I have to have surgery on my pancreas. When I do that, my body reacts terribly and I get sick. That causes tremendous pain, and I have such a high tolerance to the pain medicines since I've been on them for so long, that the medicines aren't working well and they just cut the pain sometimes. It's a hard place to be in.
The thing I am doing now to help myself the best way I know how is not to eat much at all. I haven't eaten much since last year, but I can't even eat soup or anything soft at all now. I am feeding on my feeding tube. I will allow myself broth and crackers, but not much more than that. I had been trying to eat rice and soft foods that I could tolerate, but I wasn't tolerating them well. I've decided that I can't keep getting sick like this, and eating things just aggravates the pancreas. Do you realize how hard it is not to eat anything? I mean anything at all. I am struggling with this so much. It's mental but it's also physical because I am so hungry. My stomach is empty all of the time because my feeding tube bypasses the stomach, so I have cravings but I can't satisfy them. It is a very frustrating feeling. Doctors say so coldly to me that I can only drink water. They just don't understand how hard that is. It just is. But truthfully I feel so much better when I don't eat. So that's the option now. So that's what I have to do. I don't like it and I don't want it. But it's my only chance at being okay for now.
The next step for me is to see all of my doctors over the next few weeks here in Texas. I am planning to be in Maryland in August for the repeat pancreas tests where they will determine if they need to do surgery on my pancreas or not. However, If I have another flare up between now and then, I will probably be coming to town sooner than that so that I can be treated by the experts.
My case is so complicated. I've found that if you're not a classic medical case or don't have a classic medical problem, the doctors are frustrated and throw their hands up. They want to put you in a mold, and when they can't, it frustrates them.
I just know I can't continue to live my life this way and in this much pain. Something has got to be done and I know that when I see the doctors in August, something will be done. I am just scared and nervous about what that may be. It could be something simple or something serious. The unknown is scary.
My faith in God is not shaken, however. It's funny how that is. To be honest, however, I have been more discouraged than I ever have been before. I have been down. That doesn't mean that my faith is shaken.I'm more secure in God's love for me than ever. For me, the fact that I have been down just means that I have to read His Word even more and pick myself up off the ground and keep moving on. I have to get the focus off of my problems and onto others and I need to pray for them and focus on praying for others. After the tears, I need to get up and go on.
It's been hard because I feel sick so much and I just pray for healing. I pray that even if I don't get healed that God would just take some of the pain away. That He would just make it easier for me. I just pray simple things like that. Truthfully, sometimes I don't know how to pray. I want God to know how much I love Him. I will never stop serving Him with my life. No matter what I go through, I will not quit. I will not quit praising Him for His goodness. I will not quit witnessing for Him. I will not quit telling others about Him. I will not quit praying. I will not quit believing in healing. I will not quit loving Him.
This is the scariest thing I've been through. It's scary to be in so much pain and fear you may never live a normal life. It's scary facing the fact that you may never eat normally again. It's scary to face life changing surgeries.
But I don't face anything alone. I have God. I have my husband. I have my family. I have my friends. I have God. I have God.
I read this in devotions the other day. It said in I Kings 8:23 NLT "O Lord, God of Israel, there is no God like You in all of Heaven above or on the earth below. You keep your covenant and show unfailing love to all who walk before you in wholehearted devotion."
Wholehearted devotion. That's what I want to have. I hope I have that.
Pray for me. I am pretty desperate for prayers. Of course for healing first and foremost, but also for the doctors to have wisdom to know what to do for me. Especially when I come home in August and see the specialists.
Thanks for letting me talk and thanks for listening. As I said, I've been a little down, and I am sure you can read that in this post. But I know all things work together for good as God says in the Bible, and I believe in the power of prayer.
Thanks so much to everyone who emails me and keeps me encouraged. You don't know what it means to get little messages in my inbox and stuff. You all are special to me in so many ways.
Thanks!!!! I'll write a more cheery post next time!!!!

Love, Ami