Weeks to come

It's been quite a while since I last updated, so here it goes. I had a really rough couple of weeks which caused great pain and hindered my eating. The tough thing with the digestive issues that I am dealing with, is they vary. I have cut out all of the "triggers" to the best of my ability, but still I am learning that it is quite unpredictable. I used to think it was just stress or eating a trigger food that would cause it, but that isn't always the case. I am learning each day to hand my fear over to G-d and to let the "what if's go." Notice I am saying, each day. Let's face it, each minute! Some days I am more cooperative than others;) Thankfully G-d knows I am a stubborn one and allows me grace to try and try again. This weekend was absolutely wonderful. I do a lot better with Seth being around. He is the yin to my yang. When I start to spazz out, he balances me and brings me back to the truth of the situation. This weekend was the most I have done in almost a year!! I went to the mall! I had to get some summer clothes. This proved to be a task in itself. I tried the women's petites, but still couldn't find my size without paying and arm and a leg. So I did what I never thought I'd do, I shopped at a juniors store. I was so embarrassed at first. All I could think about is, what other people were thinking about me being in there. After I realized that they had my size, I had to put it out of my mind and just let it be. I was able to get some cute skirts (which I LOVE skirts and dresses, it makes me feel so dainty) and a few dresses at a fraction of the cost of what I would have payed in my usual store. The other exciting thing I was able to do, was walk around my block! I haven't been able to do this in ages. The kids went at my pace and were pretty excited to be able to stretch their legs. By the end of the weekend, they were on their bikes, while we followed behind. I am praying soon I'll have the energy to ride my bike, but I keep on reminding myself to be patient. The sun felt amazing and really lifts my spirits. We pulled out the kiddie pool, slip and slide, and the sprinkler! The best part was seeing them play. To see them laugh and squeal while splashing around was truly a blessing. They just couldn't get enough of it. Among all of this I have been experimenting with new foods. The latest add in is pizza sauce. I have horrible acid reflux, so I have never been a tomato fan. Yet I could not stop craving it. I can only eat about a teaspoon of it with some bread, but it's a huge step! I have even mixed in with a scrambled egg and some fresh chopped basil and oooh la la!! It sings! I am really learning to appreciate herbs and simple seasonings like a sprinkle of salt. Also, through the encouragement of some fellow GPer's I got to try macro bar. They are kind of like a protein bar, but not nasty. This bar will allow me to be able to go somewhere longer than two hours without panicking that my levels are going to go out of wack, so this too is quite amazing. I have only tried one flavor, since most aren't GP friendly, so experiment, experiment. The biggest thing that has happened was I got to have a dream come true. I was finally able to baptized in front of my church! Honestly, I didn't think I'd be able to make it even all the way up to the morning of. I had a horrific week (the enemy trying to get in my way, in my opinion) leading up to it, but by the grace of G-d, He got me there!!! I was thankful for all of the support along the way, between family, friends, and our church community at Mars Hill! I'm kind of glad that G-d doesn't allow us to see the future, I'd be to afraid to do anything. I admit it, I might seem like a pit bull, but really I can be a bit yella' at times. We have a crazy couple of weeks ahead of us that I am asking for prayer. Starting at 8 PM I have to start fasting for a test that I am doing locally. It starts at 8 AM and goes for 3 hours. I am asking for prayers that my blood sugar behaves and that I can complete the test. I am asking for prayers that everything would come back normal. They are still trying to rule out other causes and this one is kind of a biggie. Next week will be insane. Starting on Monday I have an EGD ultrasound scheduled to check out my pancreas and gallbladder. I am asking for prayers that this would be done with no side effects and come back normal as well. We then are scheduled to go to U of M on Thursday for possible botox which is done through and EGD as well. I am not keen of the idea of having two EGD's done in one week. With all of the things I have gone through, I have learned the more you monkey around with things, the more issues. We are praying that G-d would grant us the wisdom to know if we should postpone. Then, on Friday we meet with U of M's Dr. H for my results of all the testing, including the 9 hour menomatry. I am praying everything comes back normal. In my mind that might indicate that things might be healing, although I don't know how the medical world views it. As always prayer that I'd be healed and for safety as we go through all of this. All this testing gets my anxiety going which does me no good. School will be getting out soon and I will a Mama to a 1st grader! How crazy is that?? We applied for Aria to get into a free preschool and are praying they accept her, with all the craziness going on. I can't thank you all enough for your support. I'll try to keep up a little better with all of the chaos going on in the next few weeks. I'm really praying I can remain peaceful, since I get ants in my pants quite a bit. In the meantime, watch, pray, believe, and be amazed.

Prayers Needed

Hi everyone. I am asking for some heavy duty prayers. I recently caught a virus that felt like the flu. I ended up getting a high fever and was quite nauseated. I just assumed it was the bug, since I had horrible body ache, but noticed I wasn't able to eat much. The fever broke and most of the other symptoms had subsided, except this pain that was on my left side. Ever since last June, when this gastroparesis started, about every 3 months I have this excruciating pain. I end up getting admitted for 5 days on IV fluids while they run many tests. The other thing is I have an elevated Lypace level. It's only double what should be normal, which normally if you need your gallbladder out, it's much higher. This level has been consistent any time I have this pain. Mostly it's baffled the doctor's, but normally they just let it go. Now that I have this new internist, he picked up on it. Yesterday I went in for an ultrasound on my gallbladder area and had labs drawn. Every time I eat, the pain would get so much worse. So they scheduled the gall bladder ultrasound right away. Unfortunately when we got there, typically you are supposed to not eat 8 hours before. I had been eating tiny amounts, but they went ahead and did it anyways. So by the time we were done, they said, as far what they could tell, everything looked about what it's been. I have a cyst in my pancreas and a polyp in my gall bladder. So they sent me home and we just figured it to be another flare up. That is until Seth woke me up this morning. My doctor called him personally to let me know that my lypace was elevated and they want to schedule an EGD where they do an ultrasound of my pancreas and my gallbladder. Until then, if the pain continues, I will need to be admitted to the hospital and placed on IV fluids to give my system a rest. For now, they are calling it pancreatitis. The doctor has advised Seth to try and pancreatic digestive enzyme to see if that will alleviate the pain while I eat (since I can't have any pain medication). I am in agony. I want to curl up in a ball and have a hard time standing. I am worried about losing weight. I can't eat and I am a long ways from Ann Arbor. I am asking for some heavy prayers that my pancreas and gall bladder would function properly. We all know they are checking and testing for other things and I am praying it all comes back normal. All I know is something is wrong, and I admit the fear is getting the best of me. Please pray that I would feel G-d's peaceful presence and that we'd get helpful information that would improve the quality of life. I am also asking for prayers to lift my depression and anxiety. I am very overwhelmed with all of this. It's not just as simple as pain, but it affects our whole family in every way shape and form. I don't want to go back to the hospital and I am hoping to avoid the feeding tube. Please pray I can maintain my weight and still be able to get enough food down to hold out through this. I tired, frustrated, and weary of all of this. I want to be able to enjoy my life the way that I should. I might be leaving somethings out, but I am in a lot of pain, so I'll leave it at that. Please pray for this to be lifted and that I could resume eating.

Never Can Say Goodbye

For those of you following our journey and have quite the memory, you may remember that I am supposed to be at U of M right now. I was due for another round of Botox in the pyloric valve (right below the stomach) to help pass food through. We had many reasons why we have put this off, but one of the main reasons was knowledge. Botox for gastroparesis is already deemed experimental. I have had pretty good results with it so far, although we know the closer together you receive it, the less effective it is. So that, among many other issues, has determined to put it off for a little while longer. I am continuously praying and asking for prayer, that I would have the ability to eat my calories that I need to keep me stable and maybe even gain some healthy weight. Recently, I have met someone who also has GP that has gave me great support and ideas on how to take the steps that I need to live better with this. So far I have reintroduced egg, bone broth, and now my latest, coconut oil, into my diet! I know it doesn't sound like much, but for me, this has been huge. The egg has replaced  a serving of juice (Hallelujah!) I can tolerate only about one a day, but it's really great to eat something that isn't pureed! The idea of bone broth really grossed me out. I admit it, I was one of the people that bought chicken breast, not for health value, but because I hated touch the bones. I had to get over that to be able to get in this nutritious replacement for fluids, especially needed during flare ups. It's pretty good, it gives me the salt I crave and has a host of great things about it. The latest and most excitement for me, is the coconut oil. My friend has encouraged me to try this for a while now, but I have been to worried the oil would cause problems. One of the things my doctor told me is never to eat coconut again. I was devastated as I love coconut, especially Mounds or Almond Joy. My husband went out and got it and practically shoved the spoon in my mouth, and low and behold, it tastes like Mounds!! I mix just a tsp into my hot water and it is just delicious! I am hoping to experiment with it more, since it seems to not slow my tummy down like EVOO so we'll see. We also finally moved back home. It's been a harder transition than I had anticipated, but I am managing as best as I can. The kids loved it and Nana and Pop Pop's, but they missed sleeping in their own beds. Aria has been sleeping in her toddler bed, but was in a double bed at their house. Apparently the little dickens decided to grow because now she hardly fits!! So we are going to have to go to a twin and say goodbye to her little bed (sniff, sniff). The great thing that we picked up over at Seth's parents house was organization. We wanted to be sure to pick up after ourselves (being a house guest and all) and it really has motivated us to do the same in our house. We are trying hard to teach our kids to put things back and to more organized as well. It's a good trait to have and relieves stress for us. I also have great news to share about Isaiah. We met with his school about how he has been doing. Isaiah got a glowing report from all who work with him. 2 teachers said they have never had a child his age test that high, ever!! I was nervous about all the school that he has missed (due to me being ill)  might have made him fall behind, but that wasn't the case. He still needs some help with socializing. He tends to like to be a professor rather than a friend. We have been working with him as best as we can to adjust to all of this and have been honest about my situation (5 year old based) and the little tike is just gifted. We had all speculated, but never has it been quite so noted as yesterday. I loved hearing all of the funny stories of how he communicates his thoughts. It was wonderful to get such good feedback after all that we have struggled with. Aria sat and played the whole time, barely making a peep. I just feel so blessed. On a sad note, a dear "brother" of Seth's unexpectedly passed away on Sunday. He was a wonderful man and he won't be forgotten. We just adore his wife and feel so badly for her. We know the pain of loss, and we ache for her. I remember people telling us they felt so helpless to help us, and now I understand what they meant. Isaiah loves Linda and when he heard that her husband had passed away, that night he prayed for G-d to bring him back to life. Mike had prayed for me often and me, for him. While he was going through Chemo and I was going through all of this, Linda would always say to me, "this summer we'll all be sitting by the pool, drinking Margaritas." I know it may sound simple, but it meant so much to me, and it's been a long time goal. I have some other experiences, but I'd like to keep them to myself till I see her at his memorial. The last thing Seth got to tell him was, "hug the kids for us." I keep on imagining him up there at a great feast with our kids running around and everyone smiling, feeling amazing and praising the Lord with joy and gladness. I find it so weird that we are wired to cling to these earthly bodies when in reality, we are destined for eternity with our Lord. Still we grieve for those who have left us behind, not for them, but for ourselves. I still get so choked up thinking about all that has gone on. I feel fortunate for going through all that I have in my life. I don't think I would have cared to "stop and smell the roses." Of course I wish I didn't have to go through pain or loss, but I blessed enough to have the bible show me what is true and I cling to that truth. I am thankful for the knowledge that we don't say goodbye, no, we never really say goodbye. Not only do we carry them in our thoughts and memories till we join them in Heaven forever. I wish I could say this makes me less afraid of dying, but I still struggle with that. What I can say is that it makes me strive that much more to enjoy the days that I do have. I keep on praying for G-d to help me change my pessimistic attitude that I battle every single day, but until then I'll strive. As always we appreciate your prayers for a miracle that this gastroparesis goes away and that I can go back to the way I used to be. I have learned to be grateful for the way I look and boy do I miss having a healthy pudge:) All I can say is for those of you who struggle with how you look, I pray you can see your beauty in the way that G-d meant for us to see ourselves, not for what the media has tricked us into believing is beautiful. You are beautiful and you matter, just the way you are. Blessed be the name of the Lord, for He gives and He takes away. Watch, pray, believe, and be ever so amazed in each minute you are alive.

Small Goals

I know I have been MIA for a while, so I'll give a quick update. We still do not have the results to the testing. During a flare up that I had last week (we were supposed to move back home, but this set us back) we spoke with the office. We know that the ultrasound came back normal, which we expected. Still we are happy about that none the less. As for the M., we asked about it, but were unable to understand what it meant, so we are going to wait for the doctor to explain. I have learned if I don't understand what something means, I tend to get obsessive and full of anxiety, so why go there? While I had a set back last week, probably due to stress, they are ordering another botox injection on May 4th. I am praying that I won't need to do this. It works, don't get me wrong, but the more you use it, the less effective it is. So I am praying that G-d will grant me the coping skills that I need, to hold out as long as possible. The other issue is if insurance will cover it. I have been dealing with medical bills and this has been a huge stress. Working with 4 different hospitals has not made the process any easier. Thankfully one hospital is allowing small payments, but the other 3 have been a horse of a different color. I have applied for all of the financial aid that I can. Again, like in the past, we are just barely over qualified. It's frustrating, since we pay taxes and do our part in being honest, and still no help. I am trying to get things consolidated through 2 hospitals, because of getting so many singular small bills. Each bill has to be paid on it's own and must be a minimum of $35, times that by the 10-15 that we have received (more on the way) and it adds up. Plus there are the big visits of 3 hospital stays that were 5 days each and well, you get the picture. Let's just say, I know where the flare up came from. It's hard looking through the bills and seeing that I owe doctors I don't even remember seeing. I have no way of verifying that I even saw them, but I still have to pay? Then I remind myself, thank G-d we have health care, as messed up as it is. If I were in some 3rd world country, I wouldn't even be here right now. I keep on thinking of the verses in Matthew about not worrying. Having GP is forcing me to let go of anxiety and stress. I have learned a good chunk of my flare ups are do to stress and anxiety. I feel G-d is having me do an about face, on what really matters. Some days, I have every right to complain. On most, I really don't. I am also being forced to simply all that I want to do. In world where fast paced, is the norm. I can't. I don't have the ability to multitask anymore and maybe that's not such a bad thing. My earliest memories involve the worry of being late or not being good enough. Now, I have to go at a pace that I don't necessarily want to do, but it's the way that it is. So while we are waiting to move back home, we are purging our house of unnecessary clutter. We have so many projects that our old house needs, but due to all that is going on, we'll have to wait. In the meantime, we can get rid of things that we aren't using. It's hard because I always find myself wanting to hold on to something "just in case." Well all of that stuff has collected and is just sitting there, when someone else could be using it. I am going through all of my pre-gastroparesis clothes. I have been trying to figure out if I should save them "just in case" it goes away, but really, I think it's better if I get it out of there and give it to someone who really could use it. I am also taking baby steps in trying new foods. I am so stuck in a rut of eating the same thing and it's only making me more resentful. So, lots of little goals are set. In the meantime, I was finally able to make it to our church for the first time since July. It was hard for me to get around, since my energy level is pretty low, but still wonderful. I got to run into many familiar faces and that cheered me up. I did have a couple of people, who I don't know as well, who thought since I was back at church, everything was okay. I am struggling on how to explain this. I have a condition that is like a roller coaster, you just never know where you are going to peak and be happy and full of giggles or when you just might bottom out and get whip lash. I found myself getting flustered trying to explain that being at church was a big step, but that I have a long ways to go. Their faces seemed to fall and they appeared confused. I wish it was as simple as how you see me, is how I really am. Let's face it, we all have a bit of a telephone personality in us. We may not be feeling the best and yet when you answer the phone or go out in public, you smile and be as chipper as you can. I have had a couple of people say, "but you don't look bad." While I appreciate the compliment, there's a lot more to the picture than I let on (unless I really know you, then you get the full disclosure). I have sat at home for so many months in the hopes that this would pass. I haven't wanted people to come and see me looking down and dumpy. I have come to realize I have to let this go. Right now, I have an illness. I am hoping it will go away, but hiding isn't living. So on the days I can, I am getting dressed and even trying to put my make up on (Yes, you can clap!) and even attempting to go out on short outings. Even though my outing might consist of just riding to store in the car or sitting in the car while the kids play at the park, at least I feel a little more included. This weekend we went to the end of the street (which is like 8 houses away) to a church parking lot so that the kids could practice riding their bikes. I wanted to go, but knew I couldn't walk that far. So my sweet Seth loaded us all into the van and drove us. It was such a small drive, I felt really silly, but I got to watch them ride around. Actually I even got in some good laugh therapy watching Seth trying to assist Isaiah to ride without his training wheels on. I just sat in the car and laughed while Seth ran back and forth holding on to the back of I's bike and then Isaiah is screaming like he's falling of of a cliff, hilarious! Let's just say, Seth slept great that night. Aria bursts into tears time to time, fearing that I am going to the hospital. I didn't realize it bothered her so much, till one day when I was just going into the other room and she started cry. So we are trying to come up with ways of being truthful about all that is going on, without causing them undue worry. I still keep on praying that G-d will heal me from this and hoping that my tests come back normal. I have a long road ahead of me. Yet, I can't help but be amazed at each day that goes by, how blessed I really am. I am hoping I'll be able to drive again soon. That's a big goal I'd really like to conquer. My biggest goal, is trusting G-d. Everyone knows the bible verse, "For I know the plans I have for you...." I keep on trying to remind myself of this, to keep seeking Him. We were reading in our study last night about how Moses and G-d would talk face to face. Whether that was literal or not, I don't know, but I love the visual of it. I want that. I want to be that close to Him, that I could truly trust and believe and not panic, because He is there. I guess I have got a lot of growing to do and thankfully the Lord has the patience for me, even though I don't. So any hoo, I guess this post was a lot longer than I guessed. I will be sure to post when we do go home. I am flinging my pride out the window and already admitting, we are going to need a lot of support. A friend of mine had this tree idea, I guess it's where we can list our needs and then you can pick where you'd like to help. I am so thankful for all of you and your much appreciated prayers. Please continue to lift up our whole family (kids, hubby, and parents!) in prayer, especially for healing, peace, courage, and endurance. Frankly, we need it for our whole family. May the Lord bless you, and keep you, may his face shine upon you, and grant you peace.

Precious Trial

I decided to take a much needed rest over the weekend after all that went on. Where to begin?? We were thankful that we were able to drive in beautiful weather. I never really thought of the drive across MI as scenic, but it really was. I have been watching how beautiful light is as it shines through the leaves of the trees. Not to mention the beautiful melodies of little birds everywhere, singing their tiny hearts out. We were able to stay at a pretty basic place called the Microtel. It's name says it all, but it gave us what we needed to prepare for the test. I tried to stay up all night, but due to the lack of food, my body demanded some rest. Morning came before we knew it. Seth tapped me on the back and said it was time to get up and go. I had figured I was going to stay up all night and have a Beth Moore athon, or read a pile of books, and especially time to pray. I didn't. I did get to listen to some soothing praise music and I feel that G-d knew where my heart was. I thought I was going to be a ball of nerves, but I didn't. As most of you know, calmness is not my thing. All I can say, is our prayers were answered. It was as if G-d had put a umbrella over me. The rain still poured, but not a drop of distress was on me on that day. Thank you for your prayers. I hope those of you really know how much prayer really helps. We even had a dear friend fast for me, my heart wept with appreciation. G-d answered. To say the test went with ease, I would be lying. That's what made me recognize the peace all the more. We went in at 7 AM and they took me back right away. I saw the chair and to the right was the tube all coiled up. I made sure to look away, what would be the point in freaking myself out? Either way, it was going down. I figured they were going to have me gown up and have all this hoopla to do, but that wasn't the case. Instead he just sprayed some stuff in my throat and proceeded to put the tube down my throat. It was that fast, I didn't have any time to think (which the good Lord knows is better). I just kept on thinking, swallow, swallow, swallow. We got it down in less than a minute. The guy just stepped back in amazement and said "it never goes that well." All I could think was, Praise G-d! I thought that was the end up it, but then I was ushered into the another room, leaving Seth behind. Basically it was the Floriscan room (sp??). There the man (Jason) spoke to a woman and they conversed back and forth. They then explained they needed to guide the tube down to my small intestine. To do this, they needed to take xrays and make sure it was going where it needed to. This is where things went off course. For over and hour and a half they kept on pushing and pulling the tube up and down. They were talking to each other and giving readings of how far the tube was in. I found out later, the tube was over 150 centimeters long! Meanwhile, they are having me on my side, my stomach, my back, the table went up and down, and well, you get the picture. All the while they are pulling the tube in and out. I ended up throwing up several times in which I was worried they were going to call it off and send me home. Thankfully they didn't. All the while, I prayed and didn't say a word. I thought if I complain, they may just send me home and make me come back on another day. I just did what they told me to do. They then brought in another man and he ended up pressing on my stomach over and over while I had to cough and make weird machine gun noises. They were all apologizing and I noticed something wasn't right (I am a bright one, that I am) by the way they were acting. Finally they explained to me that they couldn't get the tube past my pyloric sphincter which is just below the stomach. The same muscle that has been giving me all these problems in the first place (also where the botox was injected) and I couldn't help but wonder if the doctor will catch on to this. They said it was due to how small I am and that the tube kept on curling and wouldn't budge. I didn't say a word. I just kept on praying they would get it placed. Finally 1 1/2 went by and Jason abruptly left the room saying "I'm calling Samantha now!" By then my throat and stomach were quite sore from all the commotion and I just prayed it all be over soon. Seconds later they informed me that they were going to have to scope the tube down and do it that way. Looking back, all I can say again, the peace of G-d was ever present, because the usual me would go all wacky doodle. They took me up to the EGD prep area, where I had gotten my botox before and I waited. I asked for them to bring Seth to sit with me and they allowed it. Not too long later they took me back. Jason explained what needed to happen with the tube. They now had string on it every few inches so that the camera could guide it down. The EGD doctor just said "what am I supposed to do again?" I just sat there dumbfounded. They couldn't give me the usual meds that you would normally get (twilight sedation) because it would interfere with the study, so no happy drugs for me. I'll just skip to the next part. I woke up with a tape beard so tight, I could hardly move my mouth. I felt the tube all coiled up in the back of my throat and every time I swallowed it felt like I was swallowing glass. I was in a tiny room and Jason and Seth were talking. Jason told me to try and sleep. I did feel a tinge of me that wanted to panic. I felt claustrophobic, but reminded myself how important this test is. I woke up on and off and I'll spare you the details of all that went on. The eating portion came and the dread hit me. I quickly realized this was going to be even harder than I thought, how was I going to swallow with this tube in my throat? They said it wouldn't be a problem, but I have to tell you, our bodies are pretty smart. Mine apparently wanted to protect me from choking, because I could hardly swallow anything. I didn't know how to. That part I am pretty bummed about. I wish I would have crammed more in there, but 15 minutes is not a lot of time for someone who eats slow to begin with. I wish I could describe the machine, but it kind of reminded me of an EKG machine with lots of tube coming from my mouth and out to this thing that prints each movement. There were 6 lines and both Seth and I noticed, 3 were hardly moving. Seth tried to get more info from the men, but they wouldn't explain a thing. At 8 PM the test was finally over. I could hardly stand the confinement anymore. Seth and Jason had both left the room and I proceed to pathetically yell for them. As best as a person with their face taped up and tube coming out of their mouth, in other words, I could hardly make a noise. I finally tried to hit the wall, there was no call button. Jason popped his head in and asked me what I wanted. I pointed at the clock and he just smiled and said "uh uh, you have a few more minutes!" I later found out they were watching golf. Oh well, they were all very kind, so I can't complain. Jason and the other man kept on telling Seth how awesome I was doing. I just figured they say that to everyone. Later Seth informed me of all the crazy things they have seen because people freak out really bad during this test. By the grace of G-d, is all I can say. I left feeling relieved that it was over. We don't know when we'll get the results back. Our next appt is at the end of May and we suspect we won't find out until then. I was going to push for a nurse to tell me sooner, but something inside me says it's better to wait. I am praying the results will show that there is more motility there than we think. We still don't know all that will be found out by this, except that this will also help us know if I can have a J tube. I keep on praying that G-d will heal me before I need any of that, but if that is what has to happen to get me better, than I will do it. We left the hospital in good spirits. We had amazing caretakers who were so compassionate. I really felt your prayers were heard because even though things didn't go as planned, the peace of G-d was on me and boy was I grateful. I quickly realized a 3 hour car trip was not in the books for me, so I begged Seth to let us stay. Reluctantly, he agreed. It was dark out and he was pretty tired as well. When we got back to the hotel, I asked him what he thought about trying to get in for the ultrasound so we didn't have to come back next Tuesday. We both figured it was a long shot, but said a prayer. You would have figured after all the rest I had done, I wouldn't have been able to sleep anymore, but I wiped out. Before I knew it, I woke up to Seth tapping me on the back. "Get up! We gotta go! They got us in at 9 AM!" I sat up straight and ran to the bathroom. He later explained that normally they see patients at a different facility and just happened to be there on this day. Thank You LORD!!! I am so glad we got to do this because the ultrasound lasted only 1/2 hour. While the tech was working on my belly my stomached growled so loud he jumped. I giggled and said "I'm hungry." He asked what test I had done the day before and I told him a 9 hour monom. and he shuttered. I would have to say that is one of the hardest tests I have ever had to do. I know there is worse out there, so I can't complain. I did come out of there with 3 thoughts. G-d is real, prayers do help, and I am tougher than I thought I was. I think people with chronic illnesses don't get the credit they deserve. So often you are told, "just live with it." You hear the people complain and assume they are wimpy or just need to suck it up, that is until, you are that person. I don't care if you have a cold, a broken arm, recovery from surgery, or a chronic illness, pain is pain, and it hurts. I learned about having compassion from an emotional level with having the kids pass away. With having this, I am learning to have compassion from a physical stand point. It's been a very hard lesson that is deeply ingrained into my soul. Don't judge someone and assume what you think they should do, because one day that could be you, and you probably won't handle it the way you think you would. That is what I have learned and I have learned it in a way that I pray will go away. I felt pretty good after we left, but over the weekend I have been struggling. I am trying to remind myself that G-d showed up and He can do even bigger things, I just need to be patient and pray and pray that He heals me. I have heard lots of things of what to expect or not to expect from G-d. Some say that He is going to do what He is going to do, that prayers really don't need to be said. For me, I believe that praying has been a huge piece of the puzzle in my life. I don't know what future He has in store for me. Some days I feel His presence dancing all around me and some days, I feel as though I am out in the desert thirsting for even a simple word, but I can tell you this, I still believe. I am thankful for days like those. Here was a day of pure hell for me, and it was, but He made it bearable, how cool is that?? You might think, but you don't know my story. I won't pretend that I do. All I can tell you is my story. We all have stories with traumatic events, some more than others. I have buried 2 of my children and stand in front of their graves from time to time. We have a plot right next to theirs and I'd be lying to you if I told you that I am not afraid. On the hard days, I wonder if my name will soon be up next to theirs. I'd like to say I am not afraid of dying, but I am. On Thursday G-d reminded me not to be so scared. It never fails that ever such an amazing event, that stinky devil sneaks up and quickly tries to point out every reason why I should be afraid. This is why I ask for prayers all the time. Not only for healing, but for the ability to endure with grace in this battle. I have lost it on several occasions in front of the kids. On Saturday I was crying because I was so hungry. Isaiah said "Mommy, I know you miss eating, but you can still celebrate with us." It's hard to know that they see me hurting. So many of my loved ones are going through so much. I have a friend whose sister and son are fighting for their lives, both so young. I have a friend that used to be Elijah's nurse who used to tend to our little baby and even came in early to work on the day he died to be with us. She carried his little body on a pillow down to the morgue with a Winnie the Pooh blanket covering him. She just found out her 10 month old has a brain tumor. This is their only baby. I also have a friend of ours who beat cancer, but is dealing with effects of the ugly battle. I could go on and on. Still in all this suffering, I see the Lord stretching out His mighty hand as people reach out to help those in need. I don't know why we have to go through all of this. We all can think up our own reasons, but in the end, we don't really know. All I know is I first hand have seen miracles. Aurora wasn't supposed to live one minute. She live 90. Elijah wasn't supposed to breathe but a few hours, if that. He lived close to 6 1/2 months. In less than a week, it'll be 7 years ago that Eli left this world, it's a lot for me to take in. Those days remind me of how blessed we are, even though the knife cut deep and the wound is there, I am better for it. I pray that this will be the case for my health, that healing will come, even while I wait. So I ask for your precious prayers for me and my family, for all of those out there that are suffering. I ask for prayers of healing, peace, endurance, and faith to hold on to seeing the unseen. I am alive today and that just amazes me. Glory to G-d in the highest, for He is worthy to be praised. Watch, Pray, Believe, and be Amazed.

The Test

As most of you know, I have a very important test coming up this Thursday. It's called a Menomatry (spelling??). I haven't done much research on it so that I wouldn't let my nerves get the best of me. So far, I have done pretty good. That is until yesterday. I figured that I have to do the test anyway, so might as well make the best of it, right?? So Seth called to find out if he sit in the room with me and maybe watch a movie, listen to music, play cards, anything? We fully anticipated there being no issues, except maybe eating. Well, that's not the answer we got. Apparently, I am supposed to be on a liquid diet the day before (which I was never told). This here is an issue, this means my already dwindling calories are going to be affected. Not only that, but they'd rather I stay up all night, so that I can sleep through the majority of the test. The test starts at 7 AM. So that alone is going to be tough, since my sugar and protein levels go out of wack during the night. Okay, not fun, but what choice do I have? Then Seth informs me there is an 80/20% success rate. Ummm, what? Apparently, 20% of people gag and then throw up which ends the test right there. Did I mention we have to stay the night before in a hotel because of the 3 hour drive? So we could spend all that gas money and for the hotel and then be sent away? Already, I feel the anxiety rising. Well, it gets worse. I live in a silly world, because I thought they literally had me swallow the tube. Instead it is put in the way the ever dreaded Dub Hoff is, through the nose, down the throat, into the stomach, and to the small intestine. Okay, now I am really sweating. Then Seth also let's me know, they don't want me to be stimulated in any way possible, no music, not TV, no nothing, because they don't want any emotions I have to affect the test. All I can think is, if I have time on my hands, my mind goes places it shouldn't, therefore affecting all the emotions in my brain and then some!! Okay, so let's recap. Loss of calories day before, stay up all night, no food, and have to lay in silence for 9 hours with tube up my nose and such and such. Not good! Alright, so it'll be a long day. Seth enters, "I'm not done yet." What else? At 6 hours through the test they want me to take a dose of E.mycin (which has made me extremely sick) and then eat a bowl of cream soup, a deep fried fish or chicken plank, and then a muscle milk. I looked at Seth like he is insane. I burst out before he could finish "THAT'S GOING TO CAUSE A FLARE UP!" Now, I have had flare ups through out all of this, but I have learned to eat small amounts. This reduces how long a possible flare up could last. He then further informed me, they want me to eat all of this food in 15 minutes. It takes me 15 minutes to eat a small bowl of yogurt. Seth haggled with the guy to allow a bread stick with butter, since he knows I don't dare try deep fried food. The kind of flare up this will cause is that of my top two. The kind of pain that stems from these are that of what I think hell might feel like. I am terrified. To eat that quantity of food with that high amount of fat, it's insane! Had they done this test when I was 20 pounds or even 10 pounds heavier would have been difficult, but at least I had weight to hold my own. Being as low as I am at and then not being able to eat normally for 3-4 days, could potentially bring me down quickly. I am at a cross roads of knowing what to do. Yes, the test could help us see what is going on, especially to see what happens during a flare up. Yet, I can't see how I am going to lie still through all of this knowing what is coming. Then Seth goes on again (seriously what more?) then he said they'll monitor me for another 3-5 hours. I guess what we thought would be a 9 hour test, will probably be more along the lines of 11. I really don't want to do this. This seems crazy and all and all, it won't change a whole lot, from what has been explained to me. Oddly enough I have been waiting for a test like this months ago, but with my weight so low, I am afraid this will induce a hospital stay and possibly bump up things with the J tube. I have been trying to hold my own with eating and trying to avoid the J tube. So here's what I am asking for. Oddly enough, I am praying this test comes back normal. I have been praying for a miracle all along and I am praying that some how all will be normal and maybe my healing will have already begun. I am also asking for prayers for G-d's peace to over come this anxiety. Also, that I wouldn't have a flare up and that things would go normally without any issues. I realize the chances of this happening are unlikely, but I believe with G-d, anything is possible. I am praying He will intervene in a huge way and some how everything will turn out better than expected. To some of you, this may not seem like a big deal. For me, this is truly facing a demon head on. No food, quietness and not being able to move, and facing a huge amount of pain. We are going to find out if they can at least help with pain meds, but I don't know really that they can. I am also praying I won't need to be hospitalized after all of this. If I have a flare up, I then have to go to a clear liquid diet for at least 24-48 hours. I need food and that also could really cause huge issues. Not only will we be 3 hours away from our kids, but also it's Easter weekend, which is really big to us. I really want to be with everyone and not layed up in bed. I know there is someone who is posting who has been through this, if you have any input on this, I'd love to hear it. I keep on praying this won't be as hard as it seems. We are supposed to leave on Wed. night and the test is Thursday. I am quite up in arms about it and am trying hard to be brave. I want to get better, and I just keep on praying that G-d has already begun the process of healing and maybe I just don't know it yet. He moves in mysterious ways and I know that He is capable of so much, and I am clinging to that hope. I really need prayers on my behalf, my mind is all over the place. I want so much to be calm and peaceful and trust that this is all for my good, but G-d knows how he made me and I get squirrelly when I am nervous. I was reading and talking with Aria a few nights ago. We were doing a bible story. I guess it was about that people who are sick go to heaven and aren't sick anymore. She thoughtfully says to me "Mom, do you remember the last time I got sick?" "Yes," I replied with bewilderment in my voice. "Well I got sick and I didn't go to Heaven?" I sat there stunned. I didn't know what to say. How on earth does a 3 year old piece that together?? I then explained to her the different types of being sick and then went on to explain how wonderful Heaven is. I was thankful for the opportunity to talk to her about this. Having children has allowed me to really mull over what it is that I really believe and help set a foundation of what they will believe for the rest of their lives. I only pray that the words I said comforted her. Well anyways, I am in a hurry today, so I am sure I have sentences and words missing;) Please keep me in your prayers, I really need them. I pray that a huge miracle will be revealed and that my weight will increase and some how one day I look back on this time as a time of great struggle, but a huge reconnection with my Lord and what He has promised me. In all of this, as great as my suffering has been, as scarey as all of this has been, He has extended His hand to me in so many ways. Through people, through sunny days, through giggles in my children's voices, His hand is there. Even in His silence, I cling to Him, begging, crying, sometimes shouting for Him to make it all better. My G-d is Mighty to save, and I pray He gives me the endurance and the confidence that I need to make it through this valley of the shadow of death. I should fear no evil, because His rod and staff will comfort me. I pray that He'll open the eyes of my heart and see Him in a new light, especially sooner than later. O Lord, how long? I know you are close to the broken hearted and that is where my heart is right now. Rescue me, my G-d! Watch, Pray, Believe, and be Amazed. We try to keep more updates throughout this for the added support that we need. We may even update of Facebook. May the Lord bless you.

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.