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.

The Holidays

I actually have been sitting on a post that took me over an hour to compose. I just didn't care for it, so I guess I am starting all over. I am looking at my writing as my art, I haven't ever really thought of it that way before, but G-d has been revealing things to me. We finally moved back home last week. I began to realize that the kids missed sleeping in their own beds and it was time for me to step out of my comfort zone. I love guarantees. I like things to have a perfect out come without risk. Um yeah, life is anything but that. I thought if I ate "safe foods," I'd never have a problem. The only thing I didn't take into consideration, really, I don't have any safe foods anymore. I don't know if my body likes them for a while and then one day decides, yeah, not doing that anymore! Throughout all of this, dairy has really helped me. As much as I didn't care for the GI specialist in the hospital, he was right, lactose and me, we must be frienemies. I seem to tolerate the low fat cheeses that is about it. All my shakes, the very shakes that have been my sole source of food, are dairy based. So this has really thrown a wrench into my already crazy situation. I have switched over to soy milk and occasionally have tried going back to the dairy only to find me feeling sick and miserable for hours. The soy milk is great, but not as many calories or vitamins. We haven't been able to locate a soy based nutritional supplemental drink just yet, but think there has to be one somewhere. I have also found that almost anything sweet is utterly repulsive. I don't know if my body just said, enough is enough, but mostly anything sweet has left my diet. This has left a void in food, but has made me feel much more better. I truly believe the botox is working and it has done much to alleviate pain and that full suffocating feeling. It will only work for a temp. amount of time and even then, they say after 1-2 rounds, it will no longer be effective. In the eyes of western medicine, except for a feeding tube or TPN, their isn't much they can do. This is not my first choice, but after being so sick in the hospital, I have decided I'd rather be alive with a tube and be with my family, then not at all. The only thing is, it is not my call. The doctors all are telling me I need one, but will not actually implement it. I am meeting with my GI tomorrow, and there we will be discussing our options. The thing is, now that I have met with our Naturapath, I believe there is hope that this all could be stemming from some deep rooted emotional issues. I have begun to be aware of how I react in tense situations. I breathe less and hold my stomach in. He felt that if I could get past these issues, my body could begin to self heal and due it's natural process again. Years ago, I would have rolled my eyes. Now, I realize, it just makes sense. Fear has really reared it's ugly head. I just want to play things safe and be normal, unfortunately, this can't happen in this situation. I have to step out and start retrying foods again and see what happens. By playing it safe, I ate less and less in the hopes of feeling better, when in actuality, it made me feel weak and worse. My blood pressure is in the 80/50 area and goes even lower when I sleep. Other than weight loss, they don't know why it has gotten so low. I have been trying to eat more sodium and cut more of the sugar out and eat some normal foods. I have found me sucking the salt off of baked cheetos and trying to find that balance in the right amount of fluids, making sure that I get up and move around and keep my body moving. Slowly, but surely, I have had some good days. Christmas was wonderful. I cried the morning I woke up. I couldn't believe that I was still alive and I was just thrilled. We were supposed to go and celebrate with the family but I quickly realized it would be too much. Normally, I would send them to go anyways so they could have fun. After sitting in the hospital I thought of all the times I should have done.... So I asked Seth to stay at home and just hang out. The kids were none the wiser, so they were just happy to have a PJ day and open presents that others had so thoughtfully gotten for them. It was the most amazing Christmas I have had since Elijah. We didn't do much, yet just being together was all I needed. I have still had some issues with food not moving, but my biggest obstacle is the fear. I am asking for prayers that G-d give me the courage to move past all of the what if's and just do it anyways. The fear has been paralyzing and has debilitated me to the point of being destructive. It's so easy to say, give it to G-d. Yet, when I have been put in the situation time after time, the decisions are overwhelming. I would have thought having all this time on my hands that I'd be immersing my self in the bible and praying for hours. Instead I find myself doing little breath prayers of "Abba help me get better." Right now my brain seems to not comprehend in-depth things, everything needs to be extremely simple. I felt really guilty at first and very unfaithful, but now I have just handed it over to Him that He knows how tired I am. I have had to rely so much on others to help me and that has been frustrating and humbling. I want to do everything myself, but for now, I just am not able to. I have been blessed with having a blog and facebook to be able to put myself out there. As hard as it is admitting to others my struggles, I have been shown so much love and support. I can't tell you all how pivotal all of your prayers and support meant to us. My Mom was saying how amazing my friends are, and all I could do was smile and nod with tears in my eyes. I cry a lot. This has been healing. I have been angry for so long and I am learning how important it is to let that anger go. Sadness is hard for me to deal with. You'd think with the kids passing away that I'd have this down pat, but I don't. Seth has commented how different I am, how much softer I have become. I have always been so small, so you have to act tough to ward off the bullies, except in my case. I became my own bully. I am not tough, I am weak. I am only strong through the hand of G-d. There are days I freak out and ask Him where He is and ask Him why. There are also days when all I can say is "thank you." Honestly when Eli was alive we had so much support and then he died and everyone just faded away. Or so I thought. I always felt it was Eli that drew everyone in. Yes, he was so amazing. It was G-d that drew everyone in, just like He is doing now. I haven't been able to go to church since July, I struggle with pain, doubt, and fear. Yet my G-d, the one true living G-d is still with me. He is my comforter in a way I haven't known. I so long for the day that I can come into His presence and say, Thank You for never leaving me or giving up on me, even when I gave up on myself. Yesterday was a really tough day, today was much better. I don't know what each day holds for itself. I am trying hard to just live in the present and not think about tomorrow, because tomorrow has enough to worry about. I am asking for continued prayers. I believe the more specific, the better. I am asking for the ability overcome this fear and anxiety. Also for the ability to eat and gain healthy weight, and for peace and hope and sleep! In the last few months I have only slept through the night twice. Other than that, I wake up every 2 hours. I don't know if it is the low blood pressure and my body is trying to startle me or if it is the stress of everything. Bottom line, I needs my sleep! You dear friend on the other side of the computer, I am thankful for you. Thank you for cheering me on, for caring about me and my family. You too are going through things yourself, I am sure. I pray that you are able to reach your hand out to others, but especially to G-d. He sent His one and only son to die for us, and that means more than I can even fathom. I am trying to wrap my mind around His promises. I too struggle with my faith, yet I am clinging with all that I have to Him. I also want to thank those of you who helped us out to see Dale, we wouldn't have been able to go without your help. I really believe G-d is having us go to him for a reason. Thank you to those of you who helped us have a blessed Christmas. Words can't describe how grateful we really are. We are meeting with the GI tomorrow for a follow up on the botox. Please pray that G-d would show him something that we may be missing and that we'd come out of the appt. with hope. Every day is a gift. I still botch things up and get in a mood, but I am aware of how blessed each hour that we have with each other really means. I am praying this new year approaching would be full of healing, restoration, good health, good food, and time. Normal and boring sound like such a vacation. Isaiah and Aria have been entertaining me so much. Their vivacious personalities crack me up. As tough as this has been on them, I see that it has bonded them together. I make sure to tell them I love them more often and stop and watch them play. I like to imagine what they'll look like when they grow up and what they will do with their lives. Isaiah is really getting into math and wants to know all the numbers. He actually let me rock him when I got back from the hospital. He hasn't let me do that in years. He can be such a dictator and yet so sweet. Aria, one minute in princess shoes and another climbing and jumping off of things. She loves me to snuggle her, and at the same time, isn't afraid to speak her mind. I have no idea where she gets it from;) My Sethy, the love of my life, who works so hard in all that he does with kindness that is rare to see. I am so fortunate to have a husband that took his wedding vows so seriously. He has really loved me through sickness and in health. I just can't seem to get enough of them. I am tired, but still in this race. Thank you for your prayers and support, it feels so good to feel so loved. May G-d have mercy on our family, may the blood of Jesus heal me, and may we walk in peace and some day be able to help others.

In All Things

It's been a hectic week. As many of you already know, on Monday I had to be admitted to the hospital. We went to to our very anticipated Naturapath appt. I have been anticipating this and was so excited. We got there on time and happily waited to seen. Dale and Mary came out and I felt so relaxed to be there and finally here what their suggestions might be. We sat down to warm smiles and Dale began to speak when all of the sudden I felt a surge of heat come over me. It was so intense that I wanted to rip my shirt off and seriously almost went through with it. I saw everyone sitting around me and desperately wanted to tell them what was happening, but no words were able to come out. Dale and Mary saw me right away and probably figured out what was going on before I did. It seemed like forever, yet it was probably but a second. I started to feel the life force drain out of me, almost like gravity was pulling me down and my body went limp. Everyone jumped to their feet and immediately got me to the floor and put my legs up. I couldn't comprehend anything and on top of that I began to dry heave and shake violently. I looked everywhere to see if angels were coming to take me home. I am not even being dramatic, I really thought it was my time and didn't know what was happening. They gave me water and maple syrup, assuming it might be a low blood sugar, but it still did nothing. I actually ended up throwing up, which I haven't been able to do since June 23rd on the onset of the gastroparesis. They ended up calling 911 and I waited in their arms while everyone quietly whispered assuring words to calm me. Everyone was having a hard time even getting a pulse but I felt like my heart was going to explode. It was to say the least, terrifying. They ambulance finally got there, I haven't ridden in one since the day Elijah died. I just remember looking out the window and seeing Seth's face covered in fear as they closed the door. I ended up with a trainee who was trying to get my vein, which is hard for even a seasoned veteran to get. I just remember the EMT saying go ahead and pass out, it's a better place to be, and I shut my eyes. We finally got to the ER only to find, they had no record of me supposed to be coming in, so there wasn't a room. So out in hall they proceeded to check me out. I could go on and on about the details of everything, but it'd take a novel. They assumed because I have anxiety, it would be an anxiety attack. The nurse on duty was pretty rude and basically tried to shame me into wasting their time. I sat there in shock. I prayed for G-d to help us. They weren't addressing my chest pains, my head dizziness, nothing. Finally I just prayed for G-d to help me say the right thing when the doctor came in. Sure enough, what seemed like hours later, he walked in and I believe G-d gave me the words to say. I explained I am a germaphobe and the last place I'd ever want to be, is in a hospital. I have anxiety, but I know what the attacks feel like, plus I have medication that I have with me to combat that. I then went on to list my symptoms, the dizziness, memory fog, the loss of coordination in my whole body, excessive thirst, chest pain, head ache, a dry mouth, eyes, and even a feeling in my brain of feeling dried out. I am sure I am forgetting the other stuff, but I figured say my piece and at least I tried. I refused pain medication to prove I wasn't there for the drugs. He sat there and didn't seem to have a reaction and said he needed time to think. He then walked out and I had figured I had ordered hours of solitary confinement for annoying him. Thankfully we ended up with a different nurse who very understanding and really seemed to take me seriously. After a while later, the doctor came back in excited. He said he literally had goosebumps and said I should send him a Christmas card, that I probably had something called Diabetes Insepsis. He said it was rare, but that we could get me admitted and have testing done. I didn't know how to respond but agreed, maybe someone could get down to the bottom of this. Just when I thought we were done with all the drama, they informed me the hospital was full and that I'd need to be transferred to another hospital by ambulance. At this point, I figured, 2 ambulance rides in one day, why not? If it meant getting help, so be it. I had two very nice EMT riders who were calm, cool, and collected (so this ride was a bit more assuring) so I just layed back and prayed. I got admitted close to 11 or 12 at night, so the floor was quiet. I felt dazed and just did whatever they told me to. My body felt like someone had stepped on the gas but didn't release the parking brake. Seth had to go transfer the kids from his aunts house to his parents house, so he was gone quite a while. I felt like a little child sitting there with their eyes wide with fear and no way out. Thankfully the attending internalist came in and was saw how terrified I was, and was so light hearted. He made some jokes and seemed at ease and that put me at ease. He explained all the specialists they were going to call in and that I was going to have to sit tight. I was hoping the GI specialist would be beneficial, but of all the specialist that should have jumped to the plate to help, he was the least helpful. He barely came in for a few minutes and just blamed it on the botox and said I was lactose intolerant (which is what I live off of) and walked out. Seth and I stared at each other in disbelief. We then me with the nephrologist, endocrinologist, and internal medicine. Each of these specialist, I thought, did a exceptional job. They were polite, thorough, and really seemed to listen to everything that was going on. They took blood, blood, and more blood. The phlebotomists were all doing their darnest to get me on the first poke, but said that my veins were calcified, so it's was draining to say the least (no pun intended). At one point they drew my blood every half hour for and hour and a half. I seriously was perpexed how they were going to leave any left for me, when I am already anemic. They did so many tests that I don't even remember them all. The one that was the hardest for me to do was the MRI. I did refuse contrast, due to past experiences, but this one really freaked me out. I have been having head pain for years and have put this test off to being afraid of the test itself and the results. I finally agreed to do it, due to Seth's persistence of leaving no stone left unturned. Again, I had great staff to soothe me through the test itself (I am terribly claustrophobic) and it went off much easier than I had anticipated. The entire time I was in the machine, I prayed for our dear friends who are going through even more than us. In my mind I just cried out to G-d for mercy, nothing more, nothing less. Seth had to go home that night. The kids had come up to see me and it ended up scaring Aria more than helping. So Seth had gone home to give them some normalcy. I could barely sleep or think. I tried to sit back and relax, watch some TV, but I just couldn't. All I could think about was what I hadn't done with the kids. On Monday Aria fell asleep at Seth's Aunt's house before we left. I didn't want to wake her, so I never hugged her goodbye. All I could think about is not spending enough quality time with them. They always ask to play or go here or there, but especially with all this going on, I haven't been able to do much. They are 3 and 5. I don't remember much when I was those ages, how would Aria even remember me? They'd never know how much I wanted them. How their lives helped heal our broken hearts. I never realized how much I missed their constant chattering or them needing me, till I was all alone. I missed doing Aria's hair and Isaiah asking me what type of dinosaur I was going to be today, everything, I missed everything. Thankfully, I was blessed enough to have visitors at just the right time, to help me through. I thank G-d for those people, the Lord knew I needed them there. All the while, weirdly thankful, each specialist came in to say, that they couldn't find anything. With each elimination of diagnosis's we felt better, yet more perplexed. I felt very validated that they too, agreed that something is wrong. Except for the GI doc, I think all of them urged us to go to Mayo. The dietician even came in to try to assist me and was absolutely stumped at what to eat. Being at the hospital you'd think they'd have the right food available for me to eat. I had really one thing that I could eat, chicken noodle soup. She was so frustrated for me and really tried hard to pull a rabbit out of her hat, but nothing. To make things worse, the GI put a restriction on my lactose intake, so that narrowed everything down. I do have to say, out of all this mess, in my opinion, the botox is working. I am praying it will continue to work, since it is only a temporary thing. The food can still get stuck, but things move through easier. At the hospital, I barely cleared calories. They didn't seem concerned that I am still losing more weight. My arms and legs are almost always freezing, so I was under a pile of 10 blankets at a time. When I finally addressed it, they suggetion the feeding tube. My heart sank. Mayo finally called back and they told us there is nothing more they can do on the gastroparesis end. They didn't have the records from my hospital stay, so they weren't aware of all that was going on. We are in the process of getting that submitted, but it doesn't look promising. The best GI specialist in the US can't help me. We did ask about seeing a cardiologist, but they said we have to get referred out. The whole thing is puzzling and I have talked a lot to G-d about it. I don't understand why this is all happening or what I am supposed to do. How on earth did all of this happen so fast, with so little answers. So many questions and little answers. They finally discharged me. They knew I wasn't eating enough and felt I'd do better at home. So back to Seth's parents we go. I am not allowed to drive or be left alone anymore. The spells or whatever you call them come on without notice. Praise the Lord, I slept wonderfully last night and boy did I need it. I am now focusing on eating and spending time with the ones I love. I am still holding onto hope for a miracle, but I have done all I can do on my end, it's in G-d's hands. I am still asking for prayers, that I'd be healed. We need every bit of support we can get. I know that my family keeps on reassuring me that I am not a burden, but I know this is hard everyone and I feel so bad. It's hard to have to rely on everyone to do the simple things. I am trying hard to keep moving when I can and eat where I can, but the exhaustion is nothing that I can even explain. I don't know what is happening, but I am trying hard to stay in the moments and make the best memories that I can. I am probably forgetting so much, but all I can say is thank you for your prayers. I still believe that G-d could change all of this around and I am clinging to the hope that He will heal me and make each day easier and better. I keep on remembering that he is there even when I can't see. Please continue your prayers, watch, pray, believe, and be amazed.

Proceeding

So, here's how things are going. The day that I posted about all the TPN questions and lab work, I seriously was on the verge of a nervous breakdown. I don't think any of us expected this to happen at the rate things have been going. I try to stay off the internet about gastroparesis, since any time we root around for answers, it leaves me upset. I ended up driving myself in such a tizzy that I finally went to sleep and was wiped out, which was a good thing. I had tried watching TV, but found myself after a few seconds, finding it so pointless. We are still at my In laws house, which has been a really good thing. I think had I been alone in all of this, well let's just say the Lord put us at the right place at the right time. Seth got the kids up early and took them to my parents house. I was kissed and hugged them and tried to drink up each of their beautiful features and just pondered at their preciousness. As you know before each procedure, you are fluid and food restricted. I don't know if anyone else has this issue, but just knowing that you can't have something, makes you want it all the much more. So I am made sure to drink a lot before the allotted time. When I woke up, I just began to pray and peeked my eye open. You would have thought I was trying to wait for the boogey man, but for some reason I was causciously trying to proceed around and think before I thought. I know that sounds weird, but I have acutely become aware that I just let any old random thought in and it takes over, only to spiral out of control, kind of like the TPN. It wasn't just the TPN that sent me over the edge, it's all the maybe's that followed after. I felt pretty peaceful. I am telling you people, if you think prayer doesn't work, just come talk to me. I have found on the days I have huge amounts of prayer going out, whatever the out come, it just goes better. Finally it was time to go to the procedure. We woke up to snow freshly fallen on the ground and the sun was shining brightly. I felt the Lord blessed me with that, it calmed me. We got to the waiting room and a neighbor of ours came to sit with Seth. While he and Seth chatted back and forth I smelled it. McDonalds. Here are all these people NPO and one of the patients drivers was munching on food, loudly and freshly. The smell of french fries wafted through the room and I began to salvate. I haven't had fast food in a long time, and dare I say, I miss it. It took everything in me not to get up and grab the food and throw it on the floor and stomp on it. For crying out loud, not just me was hungry, but all the others were too. Thankfully I got called back a short while later. I felt so bad for the woman with him. I am so blessed to have a spouce that would never even dare to think of doing that. Basically we got in and sat for close to an hour. I had a really nice nurse. So far every medical person that knows what I have, tends to give out a saddened look of pity. This tends to amp up my anxiety. Don't get me wrong, I appreciate compassion, it's the, nothing more that we can do look. She was gentle with my veins. I have bruises from all the pokes and my arm looks like a child got a hold of it with some crazy markers. She got it on the first poke, which was a huge blessing. No dragging or repokes, so grateful. The time came for me to go back. I never realized how much I hate taking risks, but it was time to take a leap of faith. They started to sedate me and I noticed that I wasn't falling asleep. I kept on waiting to go out, but I watched them pull out tubing and was realizing I wasn't asleep. I don't know if I ever fell asleep or if I woke up in the middle of the procedure, but I woke up feeling the tubes going into my stomach moving in and out while I tried to throw up. I started to thrash around and they figured it out and helped me back to sleep. It seemed like forever, but I think it was only a short amount of time. I later woke up to hear the bell dinging with my blood pressure. It was in the low 70's and they were forcing me to sit up. Finally, it was over. I remember bits and pieces, but went home to sleep. I am still having intense feelings of losing energy in which I can think fine, but can't get my motor skills to cooperate. I woke up to this feeling. I am guessing it has to do with sugar/salt/protein levels, but still it's hard to pin point what it is. Seth juiced me some veges and I felt a lot better after that. I stuck to the liquids and just relaxed as much as possible. I did end up waking up in the middle of the night with that lack of coordination and had to wake Seth up to get me some juice and water. I finally attempted Seth's whipped quiche. I don't eat the pie crust, but he whips eggs so they aren't so hard to digest. It has been my first real food in a while. They took me off of the Erythromyacin, which helps pulsate my stomach, to see if the botox is working. I ate the quiche and it seemed to move, but I am still having nausea and some other issues. Seth reminded me I still probably have narcotics in my system and that slows everything down. So, a long story short, I don't know if it worked. I need so much prayer and ask that you not stop. We are meeting with the naturapath on Monday to hopefully address the situation at hand, and we are hopeful that he might help. I have just been asking for Jesus to hold my hand and help me through. This whole thing seems to have gotten so out of hand, yet I know that I am in G-d's hands. I will try and keep you updated. Please keep the prayers coming. In my situation no news, doesn't neccisaryly mean everything is fine. I believe G-d is hearing our cries and I ask that you continue on my behalf to pray for a miracle. Being that this is ideopathic gastroparesis, there is always hope it could turn around. There is always hope. Please pray I can eat and get my calories and grow stronger and stronger. I truly believe the only reason my labs were good, was G-d intervened. Honestly, my diet has been awful, and I believe he stepped in and made them better. He is a G-d of miracles and hope, I am praying by the New Year, this gastroparesis will be healed. Pray that for me. Everyone keeps on talking about Christmas and I keep on forgetting it's coming. The anxiety of all of this is affecting Isaiah. Please pray for our family as well, they have been wonderful, but it's been so hard on everyone. I'll keep you updated, hopefully to tell that the botox is working. Hanging on to hope.