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.

Coming Up

It's days like the last few, that I just wish I could run up to G-d and give him a huge hug. This last weekend was one of the best I have had in months. I don't know if it's the sun being out that just lifts the mood of hope. I actually have put my make up on 4 days in a row! I know that might sound ridiculous, but to me, this is a huge achievement. Just when I thought things couldn't get better (I guess I am easy to please) Seth suggests going to the store and getting some new clothes. I have been pretty much wearing all the clothes that either I already had before all of this and some hand me overs. Things have been hanging off of me so much, that rarely I bothered even getting dressed. It was just depressing. I have really missed so much of my old "normal" life, just the everyday mundane things. I miss being able to throw my clothes, shove food in my mouth, grab the kids and go to the store, hang out with people, etc. I don't know if it was the decision of doing the J tube helped me realize, my life has changed and it isn't going to go back the way I used to, at least not right now. So I have to adjust to my new normal. I remember hearing that phrase after the kids died and I just hated it. Now I realize, it's a point of acceptance. Wishing it was different isn't going to make anything change, most of the time it just creates bitterness. So we jumped on it and went to the mall. I had to go in a wheel chair. I fought the idea of it at first, but it ended up being a wise decision. I found out I wear a double zero. It was shocking putting on clothes and seeing how much smaller I looked. Being that the clothes I have been wearing are for the winter and are much to big, I felt a false ability to be able to hide. On the other hand, it was so nice to put on a shirt and feel, normal. I look like a much more scaled down version of what I used to be, but having the clothes fit gave me a boost. We weren't able to get much, since the carriers of that size are a bit more costly and the size is hard to find. I crashed only once, and Seth was able to help me remedy the situation. It was exhausting, but rewarding. Just when I thought the good Lord had blessed me so much, He gave me an added bonus of being able to go to the park with the family. I just sat at a bench and they were only there for less than a half hour, but I got to to go!! This weather has been heavenly, truly a gift. I did find out that my food intake still is lower than where it should be, but decided to take a vacation from counting the calories. We did finally get the call from Interventional Radiology. Ironically enough, they set up my appointment on Monday the 26th, my 33rd birthday. Later that day, I'll meet with the internist to go over my progress and decisions. We still are meeting with U of M this Thursday, and I have no idea what to expect. For this appt. we have to drive out to a suburb of Detroit. All this driving is hard and I am hoping that this won't have to continue. I know I shouldn't complain, I really need the help and at least it is there. Needless to say, we are going to bundle our questions and hopefully the Lord will guide us in the direction we need to go. I find myself wondering if He has answered my prayers and that maybe I am on the road to healing. When I have good days, the pessimistic side of me wonders, when is it going to sneak up on you? I don't know if this is G-d's way of saying, I don't need the tube or, see, this is what you could be doing if you have the tube. Today, I am quite winded. I am trying to set small goals of normalcy. I had a pretty symptomatic night, last night, but was able to get through it. I am so thankful and I just want to be in the moment and enjoy it, but I also know it is crunch time. I am praying that by having these 3 appointments between U of M, Inter. Radiology, and my internist, that the Good Lord will show us what is the best decision. It's hard, when I have bad days, there isn't a doubt in my mind that the J tube is the way to go. On the good, I second guess myself. Now Aria has started in on asking when am I going to get better. I have been craving food like nobody's business. I find myself salivating at the smells of the food cooking, listening to the crunching of the food, all of it. I want it. I still am abiding by Bolthouse Farms Protein Plus, Strawberry Banana, Green Goodness, and C-Boost. I then alternate with soup with pureed baby food in it, and sometimes have a breakfast sandwich that mostly is pulverized by the food processor. Oh and some cheese and some other minor stuff I am forgetting. Let's just say, I am putting the makers of Lactaid children, through college. Tonight, I watch my family scarf down hot dogs, cheetos, baked beans, and a salad down. I felt a bit resentful. It just boggles my mind to watch how much people can eat without any repercussions. Thankful, but boggling. I so badly want to just try a burger or taco's or something crazy, but I don't dare. All I know is this is a diet that has gone haywire. I stare at fresh veggies in the magazines and just want to explode!! I am praying that maybe like Paul, that maybe this will be a scale in the eyes thing and that this will fall away and I will be renewed and things will be normal again. I still have my bad days, those days are nothing that I'd wish on my worst enemy. I am praying that G-d will change my view of things and make me be the hopeful, joyful, peaceful person that I long to be. When Seth informed me of the two doctor's appointments on my birthday it kind of took me back. As we all know, birthday's aren't what they used to be like, when we were kids. But the one thing I have always loved about my birthday was, going out to eat. Seth would let me pick out any place I want and we'd have a date night. I really get a lot of joy out of good smells and tastes, so this year will be different. I keep on reminding myself, at least I am alive, and that should be enough. It's still hard though, hard and different. I have never been one to like change. All of this has brought out a desire to really ponder the life (although I guess I have always been this way) and what I truly believe. I was baptized as a child in the the catholic church, but not as an adult. I have sat through countless baptisms at our church and figured I had done it as a baby, so I didn't need to do again. Lately I have felt a huge desire to do it. I so badly want to be able to stand in front of my community and publicly confess what I believe. Even through all of this pain and sorrow, G-d has been faithful. Even if I couldn't see his fingerprints, the fact that He sent His one and only son to die for me, is enough. I can't imagine sacrificing my child for a world of sinners, it's a concept I can't wrap my mind around. I remember reading this one book about Heaven. The author was talking about how he found it so perplexing that we focus so much on the here and now, knowing that it's only a blip on the radar for what is to come. It's so easy to get caught up in the world. I constantly worry about tomorrow and have to remind myself to enjoy today, this moment. There are no guarantees. I have been so worried about making the wrong choice about this J-tube, the what if's. I did this with Eli and things just haunt me. I know the bottom line is just picking what we think is best and going with it. I keep hoping the Lord will give me that 100% sureness I so desire, but I don't know if it will be like that. So, I give praise to make maker and creator of this magnificent life that I have been blessed to be a part of. Each sunrise and sunset that I get to be a part of, is a miracle. As always we ask for your continued prayers, and I still believe that miracle for me is out there. Most of all, I am asking for prayers of Wisdom, Joy, and Peace for me and my family. G-d is good, He is faithful, even when He is silent, He is working. I am so thankful He allows me to screw up and doesn't expect the perfection I feel I should be. Today was beautiful and I am so thankful. This is the day the Lord has made, let us rejoice and be glad in it.

Spring is Coming

First of all, I just have to give thanks to G-d for this gorgeous day! What is about the sun that just lightens your mood and gives hope for a new day? It's the kind of day I wish we could load everyone into the car and go out to restaurant and sit out on the patio. After some difficult days, we finally put the call into our internist for a J tube. They put in the call to interventional radiology and I guess they will take it from there. Some people respond wonderfully to this, while others, not so much. I am at a cross roads with all of this. When my days are good, I feel normal. Yesterday and today I have been so hungry that I could just bite my hand, or the nearest one I can find. I want food and I want it bad. I can't help but wonder, is it my body's way of taking a risk and saying, I could eat it?? At the same time, for those of us with GI issues know, just because you crave it, doesn't mean it won't come back to get you. With all this beautiful weather going on, my mind says it's time to go out. Yesterday, we had an appt. Aria has grown out of all her clothes and it's always been my joy to be able to find their next season's clothing wear. So, I took a leap and asked Seth to stop at the store and see what we could pick out for her. We walked into the store and I was elated. It just felt so normal and exciting. Kids are only young once, which means I get to only enjoy a few years of being able to pick out their clothes for them before I get to hear how uncool I really am I walked in with gusto. As I started to look through the racks my body started to shake. I found myself having to lean on everything. Being at home I can sit down whenever, and apparently I do it more often than I realize. There was a woman who kept on staring at me. I can't say I blame her, but it just made me want to say "I'm not a drug addict, I'm sick," or just turn tale and run. After only a short time I knew it was time to leave. The positive side of me says, hey! You got out! The other side says, maybe you didn't try hard enough. I still go back and forth with the tube. I am concerned that maybe I am missing something else I can do, that wouldn't be so drastic. At the same time, I have heard several stories of people who have gotten them, and now their life is so much better. We do have our appt. with U of M coming this Thursday. I am guessing he won't like the fact that I am over riding the decision of the Dob Hoff. I am also wondering if he may just drop me all together for deciding to do this without his consent. 85% of me is sure the J tube is the way to go. I opened just one bill from one of my hospital stays and let's just say, we could have bought a new car. This is coming from a family that drives a 1995 minivan. I want the right diagnosis, but so far, except for my stomach emptying study, all the other tests have come back normal. Don't get me wrong, I am so grateful. But it seems this doctor has plenty more tests he wants to order. These are tough economic times for everyone, so it's not like there is funding for us in this scenario. It's hard to put a price on my life. I try not to say much about politics because it easily ruffles feathers, but in the case of healthcare, they need to do something. Having to drive my family into debt to save my life, it seems like there would be no question. I know my kids would rather have me than stuff, but after losing Eli and Rory, I have always dreamed of my kids going to gymnastics, ballet, or karate. Now, they'll have to miss out. Then again (this is me thinking out loud) maybe the J tube will give me back the energy I need to be able to go out and work and then all that stuff will come?? I am thankful that G-d has blessed us with a great family. As hard as this has been on everyone, they have been able to support us with love and even a place of refuge. We are surrounded by love and cheerleaders and it's just what we need. We are waiting for radiology to call us back and with the appt. for a consultation. I have stayed of the internet and not looked up any of this. Frankly, I don't want to know all the negatives about it. At the same time, we don't know much about it. Hopefully this appt. will give us answers on what to expect with all of this. We still have our appt. with U of M next week, only the good Lord knows what will really happen. I am trying to relinquish my false sense of control and just try to ride things out as they come. I am trying hard to live in the moment of today, actually even, the hour, and no more than that. It was a year ago, I was in the middle of a food cleanse, desperate to lose even 5 pounds, I never in a million years would guess where I'd be. Not only that, but tomorrow it will have been 1 year since our amazing Grandma passed on. Through out all of this, I think about her so much. My sweet Grandma was a night owl, like I am. Part of me is so glad that she isn't here to see me like this, it would have broke her heart. The other part, especially late at night, I imagine her sitting with me. She always loved to grab your face and stroke it and just smile for what seemed like minutes. We miss her, she just left behind such a legacy of sweetness, compassion, and a listening ear. So many important life changing dates are coming up, so many people have come and gone, it's all so fleeting. I so miss the yummy fresh vegetables, tender juicy meats, barbeques, the gathering of friends, laughter, squeals from children enjoying each second, living in the moment. I miss not thinking! To just get in the car and go for a drive and picking up burgers on the way out and just seeing where the day takes you. To pass the time, I watch old sitcoms. I have trouble reading and watching anything serious, and it soothes me. Lately, I have been watching the Wonder Years. It's funny how in the 9 months I feel as though I have a narrator whispering in my ear, dissecting each moment of my life. I often wonder how the kids will look back on their childhood. I have so longed for them to have such a carefree existence, to think of their youth in fondness. My health has had to be put first in front of everything, I feel selfish. Part of me wants to wait on the tube just in case that healing comes because I WANT to eat real food. Yet, I can't help shake that they need me to be healthy and present, even if that costs me what I want. This must all sound like such a bunch of blabber, yet I feel it needs to be shared. I know that G-d works all things out for His glory and I can only hope that maybe my thoughts will help someone else know, I too get depressed, anxious, angry, question, love, rejoice, seek, ache, yearn, just like you. I think the devil likes to tell us that we are weird, that we are the only ones who feel like this, and it brings such a feeling of despair. The more I talk with people, the more I am finding out, we are all insecure. We all make mistakes, second guess, judge, and yet long for a deep sense of belonging. I never realized how important is was to me to feel as though I mattered, that I made a difference in my life. Maybe it's a longing that G-d gives us, deep down we all want to contribute that we may bring light to others lives. I know I do. As always I am asking for prayers. I still believe He could heal me 10 minutes before having the tube placement. Or He could choose to heal me by having a tube. I don't know, either way, I pray that He makes His voice known on what is the best thing to do and for great peace about it. I have had a lot of people ask us what we need and I have been to embarrassed to reply. We do need help and I will try to organize these thoughts so that we can hopefully make this transition period easier on my family. I can't thank you enough dear one who is reading this. Thank you for caring about me and my family. Thank you for your prayers and support. I have learned in a huge dose how important community is to me. People used to really irritate me. They never did what I wanted, how I wanted it done. Now I can't get enough. Each interaction is so precious and truly leaves an impact. I keep on praying for that day when I can go out with loved ones and sit in the sun while eating some delicious food and chatting about the crazy things going on in our life. Until then, I must focus on the beauty that is here and now. G-d is teaching me not to take one moment for granted (don't worry, on my bad days, I whine) especially when I don't understand how this could all be happening. I still believe He can change all this around, but I guess I just have to wait and be patient. We have been blessed with a really mild winter, and now today almost feels like summer, it's amazing. The grass looks so vibrantly green, the buds on the trees look like about to burst open, the flowers are trying to bloom, the stars just seems so much more clear, it's all so beautiful. I have had a song that has been going through my mind these past few weeks. Steven Curtis Chapman wrote it after his daughter died and his words have echoed many that I have felt. Here is the song if you'd like to hear it. It's called Spring is Coming. I feel this season is so huge to me as I have blogged before. I pray this spring brings new life to me and my family and this song just has such beauty. May the name of our one true living G-d be praised.
http://www.youtube.com/watch?v=Bco4kmBHEKQd

This or That

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.

Smile

For those of you who have been following me, you have been with me through the lows. I also want you to be with me when things are good. Today is beautiful. Maybe it's a G-d thing, I was so low yesterday and just felt awful. Today, I am having some stomach issues, but the sun is out! The beautiful life giving sun! The thermometer is reading 62! In all of this, I am trying to use each moment that I can to create a memory. I can't take Aria to the park, but I can go outside! My In laws have a beautiful back yard that is easily accessible for me. So I went out in my PJ's and a light coat and grabbed my girl with me. Aria had her cute little Tinkerbell sun glasses on and happily chattered about playing outside. We didn't do a lot, I just pushed her on the swing and watched her in the sandbox, but it was beautiful! I made sure to pull up my pant legs and and my sleeves to get some sun on my skin and it was glorious! It may not sound like a lot, but just being able to do that little bit made my day. I keep hoping and pray that each day will get better as I continue on this journey. My favorite is the beach, not to swim, but just to look at. I can't wait till I can build up the energy to go and sit and admire the creation that G-d has blessed us with. So till then, I'll admire His creations locally. Today I have decided to not think about the doctors or the lab work, today I am going to enjoy today and just smile. I have been so excited for Aria and Isaiah to be the ages that they are at because you can allow so much more freedom. Aria is a born bread monkey girl, who is going to take the parks by storm. I think she is finally sturdy enough to hold her own while she plays. I can't wait to see her and Isaiah laughing, chasing each other up and and down the playground while the sun smiles down on their beautiful souls. My favorite season is spring. It used to be because of my birthday being near, but now, it's watching all what looked dead and barren, come back alive and flourishing. Kind of symbolic for all that I am going through. Maybe I am being pruned and cut back, so I can produce beautiful blossoms. Who knows what tomorrow will bring? For now, I am going to savor this memory of me and my little girl playing in the back yard. What a blessing. Thank You Lord, I needed that:)

Home

We are back for now. I thank the Lord that He got me through the night without any nasty sugar drops. I also thank those of you who were lifting me in prayer, because man alive, do I need it. I'd like to tell you we have finally found solid direction, but alas, not yet. After the study we did go up to the GI unit and just waited outside in the hopes that we could get a hold of the doctor or one of his nurses. G-d blessed us and we did. She was very kind and spoke with us for quite a while, but honestly, we are beginning to realize that we are barely a blip on his radar screen. His nurse even went to bat for us and tried to get him to help us, but he deferred us to the ER. He said if things were that bad to go through there. We asked his nurse what she thought I should do. She said I should go, but that things would be 50/50. She wanted me to go and urged me not to do the Dobb Hoff (though I don't have the choice) and told us about all that could go wrong. She was hoping one of the ER attendings might over ride the doctor's orders for the Jejunal tube. She also said they could just rehydrate me and send me home, that it was a gambling game. We decided to let the labs decide for us. At first the labs weren't even there. Seth actually had to call Quest and have them fax them over and thankfully, they did. Drum roll please?!?! It was a regular CBC, wah wah wah.... It was supposed to be for Pre Albumin and other nutritional markers, but I guess not. We don't know if they misunderstood the order or if it was the doctor or what, either way, I am not having much faith in them right now. So that left me sobbing in a wheel chair in the middle of U of M. Yep, my heart broke. Seth and I had finally come to the conclusion that a tube might be the way to go. I have been chatting with someone who has it and has had wonderful results. It's not the way any of us in the situation would choose, yet, we want to be here too. The way we figured, if I could get started it might give me enough energy and lift to be somewhat put together by summer. I don't want to just be alive, I want to live! I want to be apart of my family and go places, not just hearing about it. I saw what I can only assume two other Gastroparesis patients. I think we kind of stick out. She too was in a wheel chair and didn't have a feeding apparatus. She didn't look like she felt well either. The other had the Dob Hoff. I gotta say, it scared me. She was wearing a scarf on her head and you could see her hair was falling out. Her clothes hung off of her as well. She had a blue back pack on and was moving around pretty well. When she turned around, I gasped. Not at her, but at the whole idea. I had assumed the dobb hoff was kind of like Eli's little NG tube, but instead the thing looked huge and stuck literally almost straight out of her nostril. I so badly wanted to go up to her and ask her what it felt like? Was it worth it? Would she recommend it? The nurse had been talking to us about how awful this particular thing was and there it was, plain as day. I blanked out and just cried. I couldn't make up my mind and so we just decided to call it a day and go home. With all of these medical bills coming in, Seth's job, and the kids being toted back and forth, I just couldn't bear having them keep us just to do nothing. If this doctor is as important as they say he is, we figure, no one is going to want to mess with his orders. I keep on praying and hoping that G-d will guide us what to do, because we don't know. I am feeling pretty lousy and have put Seth on standby. The hard things is the driving back and forth 2 1/2 hours, when we have local hospitals here. My mind is in a fog. We keep on praying for answers. Please pray that I can eat my calories, as you know, this is hugely detrimental. We'd also appreciate the continued prayer for guidance and peace. I am beyond frustrated, yet I choose to believe that G-d IS working. I may cry, be fearful, angry, and confused, but I know that He is right next to me, no matter what happens. I only pray that He thinks that what I what I hope for, is what He deems good. I am human, thankfully He knows that.

As If....

As if things weren't down to the wire already, I just have to laugh. I thank the good Lord for His new mercies that I definitely seek. Also to all of those who are lifting me and my family up in prayers, we need them and they help. I thought today I'd be giving you a date and time of the placement, but I don't. It turns out the lab that we specifically drove out of the way for, so that it'd be easier for U of M to obtain files from, didn't fulfill the lab work. When Seth told me, I just had to laugh. Lately, I'd break down in a sobbing mess, but today the good Lord smiled on me and gave me the ability to let it roll of my back. So, we will go back in tomorrow for the lab work and head over to Ann Arbor for the yet another, not so fun, test. Please continue to pray for me in the way of fear, to be replaced with peace. I have been feeling much despair lately and I have to tell you, it's not good for the soul. I have to stop eating on Sunday at noon until the appt. on Monday. I have sugar spikes and use soy milk to help, so this is going to be a challenge, since I won't be allowed to have it. Please also keep our whole family in your prayers as well. Not only Seth and the kids, but our parents. They love us so much, and it's hard for all of us for different reasons. Our little lady has been much more attached to me and sobs when anyone leaves the house. She's never been one to be insecure, so it's been hard to see her so afraid. Isaiah, he seems to be more taking his aggression out on Aria and snapping a bit at those around us. I've noticed he has a very hard time expressing sadness. It'll normally come out through anger and then he'll say it's about something that has nothing to do with the situation. Seth has really been through a lot this week. Not only is he handling my medical correspondence (or lack thereof) the kids, but now his work has been extremely stressful. He is the only one who does his job. They have been looking for another person that can do what he does, so the shop doesn't fall apart when he is gone, and they haven't found anyone that even comes close. Normally, this would be exciting, to know how valuable he really is, but in this situation, it creates a world of stress. To make matters even just a bit over the top (cause you know we like to go big or go home) Seth was called up for jury duty. The weird thing is, he has always wanted to do this. We ended up having to send the judge a letter to try to put it off for a while, so we are praying they'll be understanding. I think we'll find out in the next week, if the judge will excuse him or not. I have been having to flip through my bible to Matthew about the Do not be worried, a lot. I have always been a planner (us control freaks like it that way) and in my situation, I live minute to minute. Today and yesterday have been really good days, the first out of weeks of seriously tough ones. I am thankful and I can only pray I can have more. I so long for boring and normal. Although, I don't know what it is about Friday's, but I always want to eat Chinese. For a moment I forget that I can't eat it and get really excited and try to think of a way to persuade Seth to order the #2 family package, and then I remember, it's not to be. So, we still need prayers for G-d's wisdom, peace, HEALING, and for direction on this feeding tube stuff. Oy Vey. I'll be updating soon, thank you for your support, we really need it.

Decisions

I know I haven't posted for a while. I have had some health issues come up and was to tired to post. Even this will be a bit brief. I wanted to ask for some extra prayers. I have a test on Monday at the U of M. We have been trying to get a hold of my doctor all week and to get some answers as well as lab results. They should have already had the labs (to determine if I am malnourished) so that we can try and figure out our next step. On the hard days, I just want a feeding tube. It's overwhelming and causes a lot of anxiety to try and even hover at the weight I am at. On the good days, I feel I can do it on my own. We found out they will not do a Jejunal tube until after more testing at the end of April. So that the leaves only the dreaded core pack or Dub Hof. I can't even stand a strand of hair being stuck in my throat, let alone a giant tube up my nostril and down my throat. I am praying for a clear confirmation on what to do. I want to be healthy for my family and either way poses issues. The core pack is normally done for people after surgery and they are normally pretty well sedated. The nurse a while back urged me that it is not what I want to do. I am torn. Supposedly, the office is going to call back tomorrow (although we hear that a lot) to set up the procedure. It has seemed like the right thing to do, until now. I had a really, really bad day yesterday, but today has been wonderful. Would you please pray for wisdom on both our parts as well as the doctor's for what to do. Also for peace. This is a huge decision, since I'd have to have this in for a while, I can't just pull it out whenever I want. I didn't think this would be so hard to decide. I'd appreciate all prayers, thank you.