Okay, let me see if I can get all of this straight. We finally decided to make a move from my family doctor to an internist. Due to complexity of my situation, it was time. Trying to find doctors that have dealt with gastroparesis is extremely difficult. I could only speak with receptionist, so really I couldn't get anywhere. I finally called my Mom and she recommended my Grandmother's internist. I figured it would take months to get in, so at least I could get my name in and wait. I was shocked to find out, he had an appt. for me the next day. All night long, I tossed and turned. We've been going to appt. after appt. and really only making baby steps, and financially, physically, and emotionally, it has taken it's toll. By morning I decided to skip it. I just couldn't bear the thought of another appt. without answers, it just leaves me feeling depressed. I called my Mom and she talked me back into it, so I went. Normally I go into huge details, but for now I'll scale it back. He was already in the room when we got there, reviewing my files. I about fell on the floor. Normally I wait close to a half hour only to have the doctor come in and not even review my chart, leaving me to explain everything (and of course, I am pretty forgetful, so I leave out half of what happened) only to end leaving with more questions, than answers answered. He didn't have the records from U of M, so he was going on all the local stuff. He actually has had patients with this, although he has never seen a case as bad as mine. He went through the course of treatments with the Reglan, Domperidone, and Emyacin. He knew it off the bat! My other doc told me to drink coffee, so I was really pleased that he knew. He ordered up food allergy testing, which we have wondered about (might as rule it out) and also some antibody tests. He had me go over right away to do them. The other thing was, he heard me about the energy. He looked at my labs. As I burst into tears about how awful I felt, he shockingly said that he could order the J tube. I was so stunned, I didn't know what to say. I was happy, scared, thrilled, and terrified, back and forth! We decided to wait to see what my labs were and try to get U of M to send the info. over for review. So here is where we are at. Yesterday I felt great, I was able to be outside, move around and even help Seth with house stuff. Today, my BP is in the high 70's over 40's again. So we are still having the huge shifts of unknown body surges. Seth wants me to wait for the tube until after we see U of M in two weeks. Me, well put it this way, the last two days Isaiah has had several simple conversations with me. This morning was him kind of talking at me saying "Mom, let's go outside. You can wear your pajamas, I promise I won't laugh at you. If anyone laughs at you, I will tell them to stop it." I sat there speechless. He then went on to say "Since you have been sick, you don't play with me anymore. We used to play together all the time, but now we don't. When are you going to get better? So that you can play with me...." He also asked me last night if prayers come true. My heart is in my throat, I feel so bad. He talks at the most random of times and just spouts of memories of me and him running together, and why don't I run anymore? I am so much more snappier, due to the lack of energy and sometimes pain, unfortunately the kids tend to get the brunt of it. Part of me can't run fast enough to get this tube. I figure it will take several months to get things going and I know it isn't going to be pleasant, but might as well suck it up, so maybe I can be ready for summer. Seth is thinking about all the testing and waiting I have been through and figures we should hold out just a little while longer. One of the points this internist pointed out quickly was, how little of treatments there really are. Botox was about as experimental as I really care to go. I keep on wondering, why wait for U of M? He really can't do much different than I know of, and by waiting, my stress levels and nutrition are going to be continually affected. Also, if I go through them, all follow ups have to continue to go through them. That means the 2 1/2 drive, gas money, and having to borrow a car each time we go. This has already drained all our resources and then some. In the meantime, I am just sitting here, not really doing anything, waiting.... I have thought of the cons of the tube and that does bother me, but at this point, I am not really involved in my own life. I don't have anything new to add to the conversations except updates on how I feel. Trust me, you can only take so much of hearing someone whine about themselves over and over. I dread the recovery process of the tube and all the adjustments, but could it be enough to help me get back up and running? I believe G-d is with us, but as most of you know, he doesn't do emails. I have heard the, give it to G-d, but at some point, I am responsible to make the decision and see what happens. I wish I could feel G-d saying "YES!" or "NO!" But I haven't yet. All I know is I don't want my children to grow up with their mother as a blob on the couch. Aria, needs play dates with kids. She asked me today to do something girly. She loves Isaiah so much, but he only wants to play dinos or Mario cart. I am asking dear ones to pray for wisdom from our Lord that would give us great peace and confidence. I don't want to cross U of M and have it bite me on the tush, but I also want to live and be an active role in my life again. I miss playing with my kids, hanging out with our friends and family, going to the store, or just a simple walk around the block. G-d was faithful and gave us this internist, now my prayer is for complete healing and wisdom to know what to do next. My brain is conking out, so I'll leave it at that. Oh Lord, how long must I wait? May your greatness prevail over this situation and open doors we have longed to see. Blessed be your name.
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