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.

Waiting Here for You

I am using this as my phone right now. I don't have the energy to type and call people like I normally would. I know I probably don't need to even ask right now for prayers, but I am going to anyways. I have dropped more weight. I have been trying to force feed myself and last night, I paid for it. I haven't met my calories since the night I fell. I am now at the weight I was, when I got admitted to the hospital last month. My local GI feels there is no way that the botox could have worn off that fast and I was hoping he was right. Unfortunately, my body is acting like it did pre-botox. I am belching like a sailor and the pain and nausea that had left, has returned. I called my GI for help and he said there is nothing more he can do. His only option left is a feeding tube. We need prayers that we can make it out this appt. to U of M on Monday. I am exhausted, extremely shaky, hungry, nauseated, and in pain. We don't know that they can even offer anything different, but we want to leave no stone left unturned. I am even contemplating taking a med that I took a while back that gave me problems, but I am so uncomfortable I am wondering if it is worth the risk. We called on call, but my doc is not on and we have noticed each GI handles things differently and doesn't like to mess with other patients. We have the radio playing Christian radio 24 hours a day. I have grown to love Laura Story's Blessings and Christy Nockels Waiting Here For You. We have been quoting scripture when feeling defeated. We even came up with hand motions for For G-d has not given us a spirit of fear, but POWER, LOVE, and SOUND MIND. The kids love it. We talk about G-d and Jesus as much as our mind reminds us to. I call out every night to Him and ask Him to wrap me in His love and peace. My G-d is mighty to save, I still believe that. As much as I cry out in weakness and fear, I still believe. I try to imagine Jesus with His hands outstretched to me and me reaching to just touch his cloak, just even a tiny bit, to be fully healed. He has put such love and awareness in my heart for others. How selfish I have been to take so much for granted. I have the most amazing family, so amazing. I have friends and supporters that are more than I could have imagined. My Isaiah has become so worried. He is so sweet. This boy has brain that has more info that I can even imagine, yet the sweetness of the most innocent child. He aims to please and strives for positive strokes. He is prays for me every day in such a specific way, not in the way a 5 year old normally would. He constantly wants to hold my hand and asks about the hospital stay a lot. It breaks my heart. One minute he'll be explaining the genealogical history of a dinosaur and then the next ask what a calorie is (we constantly have to keep track). He is so handsome. His laugh is so powerful that it could make angels sprout wings. Aria, my little baby. She has a smile that would make toothpaste models jealous. She too is a smarty. She watches me do something once and copies almost instantaneously. Anytime I walk to the back door, she ask if I am going to the doctor. She also like to ask me why I am in my pajamas. I don't have anything else that really fits, so it's what I wear, but she seems to think it's a hoot. Both of them are hilarious. They both are always trying to hold my hand. It's hard, because when I am in pain, it's hard for me to sit still, so I have to get up and they'll desperately cling to my hand. I am so blessed. We lost two children and were given two children. I keep on praying that like Job, maybe I'll be blessed with a super digestive system that works even better than the last. Of course Seth, the love of my life, I could go on and on. Last night I had weighed myself and I was pretty upset my food was stuck in my stomach for close to 5 hours and I felt like I could hardly breathe. After he held me a while, we went into the kitchen and a song came on with an upbeat tempo. He slowly started to dance. My husband is a machinist and I joke he dances like one. With tears streaming down my face, my body started to pick up and dance silly around the room. It's a precious memory. I want to be here, actively participating in life. I want to help clean the house, do cooking, go to bible studies, have people over, LIVE!!! I want to be in a joyful mood and praising G-d in everything I do. I want to be one of those "thank you Jesus" people, in every simple thing. I'll say it again, I am so thankful to know the love of the Lord through something like this. I can't imagine not having Him to run to and break down with. I am praying He will see it beneficial to restore my body to the way it used to be. Please pray that I can eat and drink my calories quota every day and that G-d would show us a way we haven't seen. I am crying out for mercy and I am not ashamed. I don't want my kids to be worried, heck, I don't want to be worried. I keep on reading Matthew 6: 25-34 to not be worried. Please keep us in your prayers, I want so much to live a life of fullness, not in sorrow or pain. Lord have Mercy, Christ have Mercy. We will keep you updated as much as we can. Watch, pray, believe, and be amazed. My G-d is mighty to save...

Prayer Warriors

Hey all, it has been a while. I wanted this post to be full of witty banter and fun, but some issues have come up that are rather urgent. I am asking for prayers, big time. Through the grace of G-d, the botox has helped tremendously. I have been eating food without to many issues and starting to build back energy. I ended up falling down my steps in the middle of the night on Friday and it really messed with my body. Since then, most of the pre-botox symptoms have returned. I can hardly eat and the belching and suffocating feelings are back. The doctor didn't think it was possible that the meds could wear off that fast, and we hoping he is right. I need prayers that I'd be able to eat normally again. I am actually hoping the stress of the fall caused this and that my body just needs to settle down. However, we don't know if that is the case. We are at U of M on Monday for a consult. We are praying there is something easy that has gone unnoticed that could remedy all of this. Or at least a treatment plan that would be successful and help me get back to normal. I just got off the phone with my GI's office and they said at this point, there is nothing more they can do here. For those that have had the botox, it normally lasts anywhere from 4-6 months. I am trying to focus on trusting G-d and praying He will open my eyes and my body to some healing. My tendency is to panic and be fearful and I am asking for prayers that I would remain steadfast on His promises and stay focused. Since Friday, I have dropped a significant amount of weight. I don't know how that is possible, but I did. Please pray that my body would settle down and that this botox would continue to work so I can eat properly. I haven't eat much since this weekend and it's already taking it's toll on me and the family. Any time you find yourself eating, even a snack, please pray that G-d would heal my body. We were able to get to a prayer meeting yesterday,which I really needed. I know I need to remain steadfast, but it's always comforting to know I have the support of others. I need peace and healing. I know G-d's will is perfect, and I am praying He agrees that I belong with my family for a long time, healthy. Thank you ahead of time. I'll try to keep you posted, hopefully with some encouraging news. I need to eat, I'm so hungry. So I am calling all prayer warriors. I know that the Lord hears our prayers and He is merciful and mighty. Nothing is to hard for Him and He is worthy to be praised, even in our suffering.

Submit

I am tempted to write about all of the things that are going on, both good and bad. Instead I feel the Lord nudging me to just talk about the good today, so here it is. We enjoyed a 3 day weekend, two weeks in a row. We just stuck around the house and did nothing. We let the house go, the laundry go, and just enjoyed being with each other. My energy is not where it should be, so we decided to just take it easy. It was wonderful. While we missed our family and friends and all that jazz, we got to bond as family and it was truly beyond special. Praise the Lord, the botox is still working. G-d has been faithful and has given me courage to begin to try new foods. According to the GI specialist, this will only be able to work for a short amount of time, so I need to look at this as a "get out of jail free" card, and eat as much as I can. I am hoping that he is wrong and that G-d is working through the botox to train my body to behave like it should. So in the meantime, I still have to watch what I eat and eat small amounts, but the Lord gave me the courage just to go for it. I tried hummus, which did not like me. But it was okay, I tried it and that was all that mattered. I did find out I can eat small amounts of boxed Spanish rice on a tortilla with low fat cheese. The one that I am thrilled about was Olive Garden's Chicken and Gnocchi soup!! I had a craving and before I could say two more words about it, Seth ran out and got it. One bowl can last me four meals. It's not much in the way of calories, but the FLAVOR!!! I cried and then I praise G-d for His mercy. To boot, I chopped up their bread sticks and let it soak up and turn to mush. I still have to have things mushy, but I don't care if it tastes good:) I have found satan trying to steal all my moments of joy with thoughts of, you are going to pay for this later, or wait till the botox wears off, etc... I keep on feeling G-d saying, just live in the moment, don't worry about tomorrow, and enjoy each good thing that you encounter and praise Me. I finding I have a stronghold of worry of the future and I am desperately praying to G-d to help me to stop doing this. Each moment I try to do this (some last longer than others) I try to resubmit myself back to G-d. A false sense of control has damaged much of my past, and I long to let this go for the future. So, I am slow. Turtles pass me by, but it doesn't matter. I have a G-d that is restoring me, a savior that is covering me, family and friends that love me and my family. While I am not where I wish I was, I am here and I am taking each moment as it comes. G-d has been showing me over and over, that this life is not my own. It doesn't matter how the world views me, it is only His thoughts that matter. We are recognizing how important it is to teach out kids about living their lives for G-d and not just because it is what we are supposed to do. I don't think I fully have soaked in the sweetness of each time they memorize a bible verse for Awana, or pray at night, until now. I found myself so often just doing things out of obligation, not because I really enjoyed doing it. G-d wants me to cherish each thing that he has blessed me with and sloooooooowwww down. Well, I am slow alright. Maybe for right now, that's a good thing. I have learned to see people with my hair looking like a bird's nest, no makeup on with my skin all broke out, me sobbing in sheer frustration. I was shocked to see, they didn't care. My dear sweet friends and family just sat with me and have prayed with me, and love me in spite of me looking a mess. I am still in awe. We have had friends send us money to help us pay for the holistic doctor, my garbage bill payed, our lawn raked, meals sent over, presents for Christmas, visits in the hospital, and messages of support on the computer. While I am thankful for each of these individuals, in showing such love, I have learned, none of this would have been possible without G-d. As much as I have been suffering, G-d showed His kindness in ways to aid our tired and stressed family through family and friends. It was G-d. Isn't it odd how we know all of this, but in the midst of the storms, we so easily panic and begin to sink. I have hit bottom several times. As painful as all of this is, and I pray it never returns the way it was, G-d is still good. In fact, He is magnificent. While my timing doesn't seem to be His timing, I need to rejoice in all good things, no matter the size. I have been hesitant to post good things for fear of putting my foot in my mouth. I didn't want to say all this wonderful stuff and then the next day, have a tough day, and then cry out "Lord where are you?" I didn't want to look like a hypocrite. But guess what? That's what we do. I don't have it all figured out and I never will and that is okay. He deserves praise and credit in each emotion. We were praying with the kids last night and I was sitting on the floor when Isaiah stood up and cupped my face in his hands and just looked at me with sheer love. His face looked angelic. It seemed like time stood still when he said "I love you so much Mommy." He then stroked my hair while standing as close to me as he could. He has never done this. I was having a really tough day yesterday and it just melted my heart. While I still pray for complete miraculous healing, in my suffering I am learning how important G-d and Jesus really are. I am learning how necessary it is to show my gratitude, how compassion and love can change a bad day into a good one. Sometimes something as simple as a message can uplift my whole day. I am appreciating people in a way that I haven't in years. I never realized how many people really love me and my family. That means so much. All my life we have moved around so much and I never really had that deep sense of belonging, until now. I am longing for G-d's joy and peace. So while turtles pass me by, I am enjoying my kids in a way I haven't, hugging people a little longer, praying for others who are struggling with their own pain, and really trying to think, what does G-d want me to do at this very moment. A lot of times it's just silence. I am chatter box, so this drives me batty, but I guess it's what He deems best. As I am doing this bible study about David, I am finding he was a mess too. It was his faithfulness and true heart for G-d that captured G-d's own heart. I hope some day I can do that too. I so want Him to be pleased with me and that is something I think He is addressing. I don't know what the future holds, but I do know that G-d is a G-d of great miracles and He deserves praise in my anger, my tears, my joy, my loneliness, my triumphs, my peace, my sorrow, He is still worthy to be praised. I can't imagine sacrificing my one and only pure child for a bunch of sinners, yet he sent Jesus. I still just can't wrap my mind around this. He is loving and kind in all of His ways. While it is no Mayo clinic, we do have an appt. with U of M on January 23rd regarding what to do next. I really don't want to go. I'd rather continue this through Dale, but we also need to have our foot in the door. There is still so much that hasn't been figured out (although at this point I am trying to let some of it go as long as I can do things normally). I am still unable to drive and so I'd live to get my body going the way it's supposed to at 32 years of age. I truly believe what sent me to the hospital was lack of nutrition, and we have some other ideas as well. We have found with certain doctors don't have an answer they put it back on me. I feel G-d is rising a confidence level in me to trust that I know my body and to not always rely on doctors 100% knowing everything (which hello, they are only human, maybe super smart, but human). So as always I am asking for healing from gastroparesis, my blood pressure to return to a normal level, energy!, courage, and to exceed my calories and get some meat on my bones. I am also asking for prayers for Seth for good health and rest. The kids as well. They have been exhibiting signs of stress in there bodies and I am praying for their well being as well. I asking prayer that G-d would show Himself in a supernatural way that we could only say, that's G-d. Your prayers and support are worth more than gold. Thank you for letting me into your homes, into your lives, and into your hearts. Please forgive me if I forget to respond to any messages, my memory still hasn't caught up yet. Oh Lord, thank you, thank you. Watch, Praise, Believe, and be Amazed.