I wanted to update everyone on what is happening. I have not been much on Facebook or checking things. It's just something that I'm not going to be able to do all of time. I will do the best I can. But I'm letting you know an update on things.
I made it home here to Texas on Saturday, 1/26. I am very frail and fragile. I have my feeding tubes, which are the way I am getting my nutrition. Drinking and eating any substances make me feel like throwing up and vomiting. I am allowed to vent, so sometimes I will eat a few crackers or sip some milk, and when I feel that sickening feeling hitting, I just vent. I am not supposed to vent much, however, because it is just like vomiting and you lose your electrolytes and they are imbalanced. So I am trying to stay on my feedings as much as possible and occasionally I will try to eat a few crackers, but I always end up venting them out, so it's hard and I just feel so weak and I'm trying to stay strong but this is hard.
I am having home health nurses check on me once a week to make sure I am not dehydrated. I can't drive much any more...not because I can't, but because I just don't want to be on the road with the medications that I'm on. I want to be responsible and I want to be careful. So I'm reliant on Kevin and his family, and I am so thankful for them.
I am so very emotional about things. The doctors at Hopkins basically talked with me and told me that as far as they are concerned, I am one of their 2 sickest patients (in my doctor's practice). They are so concerned that the issues I have are so severe but are really complex. They said that if they were to do surgery, they would likely take out my stomach and my pancreas, but there is NO guarantee my pain would be gone. In fact, it could make it worse. She told me point blank, "You will never eat normally again. You are not normal, and you will not eat again."
Hearing that was hard, but hearing the rest of the conversation was worse. They basically think that I have some other major disease processes that are contributing to the fact that my organs on the inside of my body are calcifying and that there are some strange labs and symptoms I am having. They want to see how I do over the next few months and then see where we are in March/April. They also want my doctors here who know me well, to look at my autoimmune conditions. They feel that I could have some underlying serious disease process that is causing so much of what I am going through.
....So, the doctors kindof want me to go to the Mayo Clinic to stay for a week and go through the wringer again but not leave without a diagnosis. I still may never eat again, but I may know why I am going downhill so fast. I have lost so much weight and stuff. I just am so weak.
Saying that, I don't know if Kevin and I are going to go to the Mayo Clinic or not. Honestly, I ask you to pray for the decision. It will be a lot of money out of pocket that quite honestly we just don't have. I also know that even if I get a diagnosis, the treatment is likely to be the same, so I am not sure. It may not be. I just need the wisdom.
In addition, I am tired. I am tired of fighting this disease. I am working hard on staying positive and strong, but emotionally, I am weak. I need God's power and I need encouragement. I have been just so sick, literally, I can't get on the computer to answer emails and such. I hope you all understand.
I know that this post isn't very upbeat. It just seems like things are hard. My mom is in surgery for gallbladder removal. That was an emergency. Several people I love are battling cancer, and that is weighing on my mind. I just feel weak, but wanted to update everyone.
Please keep us in your prayers. If I need and should go to the Mayo Clinic, please pray for God to provide a way and not only that, but a peace about it.
Thank you for all of your prayers. I could never make it without them, and I feel them daily. Thank you, too, for understanding how I physically feel and that I am not responding the way that I usually would.
Your friendships and love and prayers get me through. And God is Good. He will not fail me. This is going to be used for His glory always.
Love you. and please pray. Soon I'll have better updates...
Ami :)
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