U of M

We finally went to U of M yesterday. We had to spend the night on Sunday in a hotel due to how slowly I move in the morning. We had wondered it we should really do it due to the cost, but knowing that stress aggravates my symptoms as well as, I move really slow. I haven't really enjoyed a hotel in a long time. The last couple of times we stayed in one we were on our way to Maine and I was unknowingly very sick. When we got to the hotel I looked out our window to see a unpopulated pool and hot tub. I started to cry. I still can't wrap my mind around all of this. We should be staying at a hotel for fun and family, not sickness. The kids would have been thrilled to have the pool all to themselves, but that isn't why we were there. I could have brought my swim suit, but I am already so self conscious of how I look and didn't want to draw any attention to myself. So Seth and I spent a good deal of time in prayer and listening to my two songs on you tube, over and over again. Seth just cradled me in his arms while we petitioned our prayers and requests to G-d. Morning came before we knew it. Seth patiently waited on me and got everything together and before we knew it, we had arrived. I never expected the hospital to be that overwhelming. I can't even imagine how big Mayo must be compared to that, but it really surprised me. It almost reminded me of the Jetson's, people buzzing all around quickly. There were a lot of people in the waiting room and the TV was blaring. You could tell most of the people there were in pain or anxious as all of us seemed to be not even glance at the TV. Personally, I just wanted to shut it off. I didn't want to hear the latest celebrity brake ups or how to keep my marriage sizzling, I just want to live again. I saw a man sitting across from us, he looked like me. Our clothes barely fitting and so small. I started to get a lump in my throat. They finally called us back. I was doing well until I saw a woman walking around attached to a Kangaroo pump (feeding tube) with her formula on a pole. She looked like me too. I just wanted to run. I felt the tears well up in my eyes and my heart started to pound. We were informed that it would be a while as the doctor had another new patient to assess, it was that man I had seen in the waiting room. We sat there for a couple of hours. All the while we read scripture, prayed, I sang (trying to drown out the sounds of the toilet flushing over and over again). I tried to laugh at the irony of me, a germaphobe, in a Gastro. office. By now, my food was wearing off and I was starting to shake. Seth had to run back to the car to get me reinforcements and my anxiety started to kick in. I think it was half past 12 by the time a resident came in to assess me. The thing that I am still kicking myself for is, I didn't get to tell her everything. I had just assumed the doctor would come in and take as long as he did with the other patient. They seemed to focus more on my swallowing than on my stomach itself. We also found out, our local GI hadn't sent any records over, so they were going on my words only. Then the doctor came in and by then I felt like a car that had ran out of gas. He was very, well we'll say, clinical. I explained my issues with pain and eating and he didn't even seem fazed by it. He said I could go get a feeding tube anytime I wanted, but he didn't really care. Like I said, very clinical. He did say that my gastric emptying test that was done, was extremely inaccurate. I do agree with that. He said he wanted to start all over with the testing and listed off several things that we need to drive back to U of M for each test. Until then, no diagnosis and no help in really aiding my eating other than to try and drink more. On my own, I did go back to taking the Domperidone. I was having a truly awful day of not even being able to swallow water and I felt G-d urging me to take it. I think it is kind of helping, though it has some weird side efffects that even the pharmacist urged me not to take it. But at this point, I have no other options and the benefits outweigh the risks. My testing will last through out February and each time we will have to spend the night. I am trying to remain focusing on trusting G-d. The doctor explained that sometimes things that are happening in the throat can affect the stomach and also the other way around. I am praying our diagnosis is incorrect and that hopefully there is a really simple solution that could help all of this. The biggest issue is keeping my weight where it should be throughout all of this. The feeding tube presents issues as well. He was surprised at how much weight I had dropped in such a short amount of time, which I didn't really want to hear. He did say that sometimes things like this that come on so fast, sometimes can go away as quickly as it came. I am holding on to that, with sweat and tears. The big plus of Mayo is they get all this done at once, where as this may drag out till March. I need big time prayers that not only can I eat, but that I get my weight up. I am so isolated right now and so is my family and it's not way to live. I want to cherish each moment and I am asking for prayers for strength, courage, and peace as well. I am trying to breathe and relax, but 32 years of being strung out, I need G-d to help me change that. Please also pray that this Domperidone would work well for me and the side effects would go away. He did say that the Botox dosage I received was not enough. I guess they normally double the dosage, which could explain why it quit out so fast. They have to wait at least 3 months to do it again, due to insurance. I want to gripe about so many things, but there is no point, I don't want to waste my energy. I am still asking for prayers for a miracle, we saw them time and time again with Elijah and I am praying mine is on it's way. I probably sound like a broken record, but it is what it is. Big time prayers for ability to eat, for me not to enter into fear, peace, and big miracle for good health. My local GI has dismissed me from the office now that I am a patient of U of M's and we will just leave it at that. I still don't understand how it works locally what I am supposed to do. We are left with more questions than we started out with. I am trying to focus on being positive, but I have to say, it's overwhelming. Anyways, I left out some stuff, but you get the gist of it. I'll be updating. My heart goes out to those who are suffering everywhere. To see so many sick people at U of M was heart breaking. Most people seem to have this dazed and bewildered look on their faces. All I can say is, if you are healthy, count your blessings and praise the Lord. I took mine for granted and I wish I could enjoy days the way they once were. So, I am praying and holding on to His truth and doing the best I can, one moment at a time.