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.