I dont know what to name it.

So... I have been putting off this post for a while. I just can't seem to find the words to put all of this together. We were able to go to U of M on Thursday. We were very grateful that the ride out there was nothing but beautiful and sunny. It was such a beautiful drive. The grass was a beautiful, almost electric green. Each farm that we drove by seemed to be right out of a painting. It was as if we were driving through painting after painting. It was if time had stood still. I liked it that way. We had to make a pit stop and while there we decided to sit outside in sun. A tiny little brown bird bravely hopped up to us. I have no clue what kind of bird it was, but it hopped around so fast. It was amazing to see how quick it's movements were. It's head moved side to side so fast, all the while striking a statuesque pose with each movement. The little beggar inched closer and closer. We fed it some crumbs and sure enough many more little birds decided to check us out. I don't know why they fascinated me so much, but I found them absolutely mesmerizing. As fast as the little guys came, they all flew away. It was time to get to our appointment, so we headed out. When we got to the office, it wasn't anything like I thought it would be. Our local hospitals are quite new, while this one looked like a throw back to the 80's. We got called back quickly, which was a huge relief, due to a sign that said INFECTIOUS DISEASES. We got into the tiny room and readied ourselves. We prayed and then went over any last minute questions. Finally the doctor walks in. He says "I don't know how you got into this office. This is the fast track office. So that leaves you with two choices." I felt the blood drain out of me and stomach dropped. "Either I can come in now, and give you a 15 minute visit, or you can wait for a while and I can give you more time." I pointed to the door, and he walked out. While my body tried to redistribute my blood to the proper extremities, we waited for what seemed like hours. Seth tried to play a dot game with me, but I wasn't able to follow very well. He still seemed quite pleased that he won. Oh well, whatever makes him happy. The doctor finally came in and I'll try to just spit it out without story telling. Basically, he said my case was very difficult. I truly didn't expect him to say this, being that he sees stuff like this all of the time. We went over the blood tests, to which we didn't know, he has been testing for autoimmune diseases. We also went over the barium study, hoping that a glimmer of hope would come out of the normalcy of it. Instead he informed me that we'd be doing two more new tests. One, called a monometry. It's where they have me swallow a tube down my throat, stomach, and into the small intestine. This is to measure pressures to see how often my stomach and small intestine are contracting. This test is going to be 9 hours long with no sedation. I have had 4 or 5 EGD's and one of them I woke up while they were hoisting the tube downward, not fun. So, as you can imagine, my jaw hit the floor. We can't do another gastric empyting study, since we are assuming that the botox should be working, so that would leave the test obsolete. We informed him of our decision to go ahead with the J tube. Let's just say he lowered his glasses and gave us the look. You know that look that says "You dare challenge my authority!" He then went on for several minutes explaining why I should not do it through IR, that it needs to be placed by a surgeon. SURGERY!! Say what? I felt my heart stop. He then went on to tell us that we need an ultrasound of my stomach's blood vessels and that we need to see if they aren't narrowed. So I'll be needing to go back as well. They can't be done back to back, since both of them have preps. Sigh. He also is having me start a new medication. This one does not speed up gastric emptying. Instead it can be used to block pain in association with the full feeling that I get. It also increases appetite. I quickly informed him that I have zero problems being hungry. In fact I am so hungry that it makes me feel a bit resentful. So the thought of having a med that will make me even hungrier, makes me a tad nervous. I kept on having to remind myself, he's the expert. I have been doing acupuncture, which he was thrilled to hear. I was sure he'd be the skeptic, but he too, saw the benefits of what it can do. I finally looked at him and point blank asked him, "Am I going to die from this." His response was, "we'll see." What? I thought this is where we have the ole "Yer gonna be fine Missy." No, that was not to be. He then went on to say, after these tests, if things pan out, he'll call a surgeon and we'll get the straight J done. I have been thinking all along that we could have the J tube inserted and temporarily use it to supplement my eating. Apparently his theory is, it's permanent. Gulp. Okay, so now I am seeing why they haven't rushed this. I was wondering why the nurse kept on saying that I was so young and that I wouldn't want to live this way. I just thought she meant a year or two, but the rest of my life? I am probably leaving more things out, but I did advocate for me and my family. He listened as I explained the loss of our social life, the stress of the emotional trauma, the physical fatigue. Seth asked if the tube feedings would help boost energy. The doctor's response was "this is gastroparesis, I have well nourished people that are always tired and don't feel well. It's the disease." Disease? I guess I keep hoping that this is all much less of a big deal than I feel, after speaking to him, not only am I not a wimp, but I am actually stronger than I thought. He said I was doing a good job of trying to maintain things, but that I need more help. As much as I was not pleased at what he had to say, since it wasn't what I wanted to hear. G-d still answered our prayers. The doctor took more time to speak with us and even slightly seemed a tiny bit empathetic (which for a specialist is pretty darn good) we left knowing we had said all we could. Today, I met with the internist. I really like him. He went over all the allergy tests and some other stuff that he drew up and nothing. He just looked at me and said the ever dreaded "I wish there was more I could do." While it wasn't what I wanted to hear, he informed me of some pretty important drug interactions that I didn't know about. We asked if we could have to tube placed by a local surgeon, since I really don't want to be driving back and forth with issues and pain. He said he'd be looking into it. Today is mine and my Mom's birthday. It wasn't spent exactly the way we both had hoped. Instead of going out to lunch and maybe some shopping, we went to a doctor's visit to find out if they can help save my life. Still, a few months ago, I wondered if I would even make it to my 33rd birthday and thankfully I did. I can't help but wonder, is this my last?? Of course most would say, oh stop, but really, we don't know. I have been encouraged to read a book called 1,000 Gifts. I haven't been able to read very well lately, due to my poor concentration level. Seth listened to it on audio and said I should give it a read. I still am not very far in the book, but she has some very valid points. Even though it seems her reasons for living better were because of a dream illness and not a real one (though I can't say that for sure, since I am not far in the book) I am facing the reality that my life could sooner than later be over. I love G-d. I am so thankful that He sent Jesus into the world to die for our sins. I also know that He made us to be real. Sometimes I think that religion can pretty things up too much. I remember when Eli and Aurora died, we heard often, at least they aren't suffering anymore. While we knew that to be true and were very grateful, our human side ached to be with them. No logic, no truth, just a deep longing and desire to hold our children alive and well. Since being diagnosed with this, I have heard my share of "cheer up" messages. I know they mean well, and I love them for that, but it still hurts. I am scared. G-d knows this. I doubt many people look forward to the process of dying. Maybe there are some, but I am not one of them. Yes, I believe in Heaven. Yes, I will rejoice to be with my children, family, friends, and of course my Lord with zero pain and a huge banquet where I can eat without any pain or fear. I also don't want to leave my children here, my husband, my family, my friends, my life, my body. For so long I have felt so self conscious of how I have looked. All the while growing up thinking I was ugly, now I see myself differently. Even as my skin breaks out and my body has changed shape, I see a different part of me. I see Me. I don't want to go. While it's lovely to have a book to read about changing my life to make it better, I'd rather be living it, than reading about it. You know? Yes, I am sure I will gain insight, but still, it won't change the fact that things are coming down to the wire. I am tired and am trying very hard to just keep up with just basic things. G-d gives us a longing to join in with others, but what happens when you can't join in anymore? Everyone elses lives must still go on, regardless. I am sure G-d made us that way as well, if we didn't, we all be sobbing messes. So what do I do now? I am trying to connect with others, but I don't know how. I feel awkward as I don't want to make anyone feel obligated to come and hang out or uncomfortable. I also hate being alone. I want so much for the kids to play and not hear about another doctor's visit, bill, medication, tube, blah, blah, blah. They need their childhood. They need to run around and play without a care in the world. Their first memories shouldn't be about worry. Yesterday, Seth and I both woke up in a funk. Seth had enlisted his brother to take pictures of us for my birthday. Each time, I have been in the hospital I have sobbed over not having a real family photo. Selfishly it's for me. It's for the, just in case. I want the kids to remember me and see that we were a happy family and that they'd look at the picture and know I loved them and wanted to be here. That's the melancholy side. The other side is hoping I'll look back and remember a time when I was faced with death, but now am living perfectly happy and normal. I like the 2nd reason better. So today, I did not get to go to my favorite restaurant or walk on the beach for a date night. Instead I spent it with pureed foods, but more importantly, I spent it with, my family. While it was not the ideal birthday, I got to be here with my family and that in itself is a gift. Please pray on my behalf that I can begin to eat properly and gain healthy weight with peace and joy in every moment. Please lift our families in prayer as this is a heavy burden to bear. Please pray for strength and for G-d to open a door that we haven't seen, of great hope and promise.