Day 303

I seem to be recovering nicely from my surgery. I just have to remember not to over do it otherwise nobody here will be a happy camper. I am really struggling with negativity, trying to keep it off my lips and out of my life. I began a new daily devotion program today. It is a combination of several things I have learned over the years and I don't know why I ever stopped. I am so excited because every time I implement this nothing but good things happen. It is what has given me the strength to deal with everything I have been through up to this point. I started writing it out in a notebook but quickly transferred it to my computer so I will have much easier access to it. It is interesting to look back over old spiritual journals and see the things God has done through the years. I will share my devotion program in a later entry. Right now I think we are going to to sit down as a family and watch a show. I am still pretty wiped and sore from my line insertion yesterday.

Day 298

It has been a rough day to say the least. Between the pain and nausea bombardment, the blisters on my arm where my PICC line is, the migraine, and my restless leg I just want to go to sleep, just want it all to stop. I have to admit I get so overwhelmed sometimes. It's like my whole body is screaming at me for something I have done to upset it. I really hate for my family to see the days this thing breaks me, but sometimes it just does. It is days like this that I have to remember that this too shall pass. Monday I will have surgery to have my central line replaced and get this aweful PICC line out. I am nervous because they are just using local anistetic so remember me in your prayers. My baby girl just came in and told me she can't sleep so I need to go spend some precious time with her. 

Day 297

It is the middle of the night and I lie here awake, my heart in turmoil. Many years ago when Noah and Hope were small I would be awakened in the middle of the night with Clint's sister Kim and her two amazing children weighing so heavily on my heart so I would pray over them for hours. Kim was in a bad place and at the time she didn't have her children and I wanted nothing more than to take those babies in our home and give them a safe place to land but Kim was in such a bad place that I knew she would take it as something I was doing to her not for her, but my intentions were pure. I didn't want to keep them from their mother or father or any other family members, I just wanted to give them a place they could call home. Because I couldn't do that I prayed over them daily. Our home has always been open and a safe place to land for anyone who needed it and they knew the only two rules were leave your drama at the door and don't lie. Over the years many people have joined us in our tiny home. Both of my brothers, my mother, two of Clint's sisters, and his dad, plus Hope's best friend and many of Noah's friends. One Christmas my mom, my brother, Clint's dad and one of his sisters were all here with the 5 of us and it never seemed overcrowded. My sweet niece doesn't know me very well at all, but I know her and pretty much everything she is going through, I have been through and I really hope and pray that she will allow me to share my story with her because I love her like all my nieces and nephews unconditionally. I love my kids friends the same way and look at them as if they were my children too. I haven't been able to be the mom, or wife, or daughter, or sister, or friend I used to be; the one I should be; but I will get back there and hopefully sooner rather than later. I have dealt with some pretty intense pain in my life. Some due to loved ones taken far too early, some due to people who were in pain and just wanted to hurt someone, plenty self inflicted but the strongest pain, even stronger than the constant physical pain this wretched disease inflicts, is the pain I see in the faces of everyone who loves me and can't do anything to help me. When you have such an aweful disease that allows you to slowly starve to death, the pain is not in the illness, but in knowing my loved ones get to watch it happen. I have always prayed that God would shine through me and His joy would overflow onto everyone He brought into my life. I never wanted to be a cause of pain for anyone and yet here I am. I know soon God will use my story to touch many lives and aloe me to be an advocate for rare diseases so doctors will stop mistreating people simply because they cannot understand their illness and will work together to help patients find relief of symptoms and soon after a cure for all the small, misdiagnosed, and very rare conditions. I also know God is going to allow us to be a safe place to land for many more people in the most amazing ways. I am so ready to be healed, but thank God I am willing to wait for His perfect time and His perfect way. We are at our strongest for God when we are at our weakest in life, so God, here I am, use me!!!

Day 293

I am so glad to have Noah home for the weekend! Hope is at her color guard competition and I thought she would be there all day but thank God she is on her way home now and her band director said they did better than Tuesdays competition where they got a 1. 

I am starting to get used to this PICC line now that I have extensions and don't have to do everything one handed while trying to keep sterile. I go see the surgeon Tuesday and I think he will put in a more permenant line. I know my condition has random cycles but within those cycles are bigger cycles and normally between now and Januaury is my good time of year. It is generally the only time I can eat. This year however I am worse than I have ever been which leads me to wonder that when March which begins my hardest time of the year rolls around if it just going to get worse. I am not sure if my body can handle worse than now. I do still know that God is going to heal me but I am afraid I haven't hit the low I know is coming and I know that through that there will be no dispute that God alone has healed me. I suppose I am just going through the, " Take this cup.." stage. 

I have to run my meds so for now aufedersein, au revoir, so long, I bid you adieu, and I'll catch you in the rerun!