Briefly

I just wanted to briefly update to all you faithful friends. First, I must give Praise and thanks to our G-d up above, for giving me a fantastic holiday! He helped me through a booby trap of food and to truly recognize the holiday for what it was for, to be thankful. We got to catch up with family and spend time not thinking about doctors and such, it was like a mini vacation. I had 4 days, with little to no symptoms (still abiding by the diet though) and I actually got to feel normal! My poor GG was admitted to the hospital, when we noticed that her mouth was swelling like Seth's had a while before, when he had gotten an abscess. She is almost 95 years old and very delicate. I have never seen her cry in pain before, so it broke my heart. She is on IV antibiotics and presently they are waiting for her to possibly go into surgery at any time, to take care of things. My Dad just called me and said something that blew me away. As you know, she is blind. She doesn't remember that we had Aurora and Elijah so this made this all the more exciting. My Dad said she was praying allowed (she is a huge prayer warrior) when she said that she could see a little boy and a little girl, both with blond hair. My Dad said she just sat there smiling and saying over and over how beautiful and happy they were. I am speechless. I asked if she was sedated and he said, no. Praise the Lord, this is just amazing. I have to get going, but I wanted to ask for prayers for my GG and for me. I started having pain last night and I won't get into all the issues, but please pray for whole healing for me. I can't thank you all enough for your prayers and support. I really need them and I thank the Lord for each and every one of you. I will update soon. Watch, pray, believe, and be amazed.

In G-d Alone

What comes to your mind when you think of the holidays? Family, parties, traveling, decorations???? For me it was the excitement of all the holiday food! Of course being thankful for all the delectable delicacies I would get to wrap my taste buds around. Maybe it's because I am hearing impaired that makes my sense of smell and taste that much more enhanced. I used to love going to the Yankee Candle store and smell each of the scents with my coupon in hand, eager to purchase the latest foodie scents of cookies, mint/vanilla, or a juicy fruit of some sort. I just bypass all the flowery scents and bring on the food! I always wondered why they haven't come up with a corned beef, taco, or sweet and sour chicken scent yet, but I guess they bypassed my suggestion;) I suppose I could have just gone into the kitchen and whipped up a batch of cookies, since most people that stopped by (never do the pop in, or else the candle won't be lit!) seem disappointed that it isn't the real deal and it's only a candle, but non the less, my sniffer appreciates each waft! After Elijah and Aurora passed, the holidays became a point of dread. While everyone was kicking up their heals with joy and merryment, I was longing to hold my children in my arms and was riddled with guilt to even crack a smile. Since having Isaiah and Aria, slowly the excitement of the holidays has returned. With each holiday I'd get so excited to have a reason to pull out, here it is people, my Kenny and Dolly Christmas CD! It is the only time I listen to them and I don't know why, but I love it! I'd make my big batches of stuffed peppers or beef, barley, mushroom, onion, and tofu soup (trust me, it tastes better than it sounds) while Kenny, Dolly, and I, sing our hearts out. Of course there is the extra batches of green bean casserole made with cream, not milk. The egg nog. The puff pastries full of goat cheese, sun dried tomatoes, and more, oh my!!!! I would pull out my fat pants and sweaters and chalk it up to help keeping me extra warm through out the winter. I even told Seth before all this had happened, how excited I was for the holiday this year. The kids are old enough to understand what it's all about and actually engage in activities of the past. Then this all happened. I didn't even realize it was time to pull out the Christmas tree and I realized the holidays were finally here, and I can't do what I have always done. To you optimists out there, I understand that I am truly blessed. The thing is, can you imagine what it is like to do this if it were you. I am not saying going on a diet, because let's face it, most of us popped the stuff in out mouth and say we'll begin our diet tomorrow. In my case, I know if I put that food in my mouth, or if I stress out about this or that, not only will I physcially pay for it, but so will the rest of the family. I thought about skipping the holidays all together. I really did. But quickly came to the conclusion, I had begged for these children and I can't not let them have fun just because I am not feeling like it. So I knew that Seth and the kids would go, but figure it is best if I stay at home. I'd rather not bring anyone down. Besides, I kind of feel like a freak show with all my food being chopped up and it really does look nasty. As I am talking to my Mother in Law, she says to me, "Well you can have soul food?!" I blanked out and thought for a moment, is she nuts? I can't eat deep fried chicken, macaroni and cheese, collard greens? She then says "Soul food is being with those you love, it doesn't have to be about the food, besides people need to see you. They need to see how you live." It took me a while to mull this over, since the bulbs in my head seem take a while to light up. When finally her words hit home. She's right. What am I going to do, sit at home at every holiday until I get better? I'm living like the dead. Some days I have already buried myself, this has got to stop. Sure there will be days that will be awful, but on the days that are good, I need to live them up! Okay ya'll, I know I probably have come to this conclusion many a time, or maybe you just want to shake me like a can of pennies, but seriously, I never knew how quickly the wool gets pulled over my eyes. So this year it isn't going to be about the food. I am still trying to figure out how to block out the mmmmmmmmm'sss or the munch munches, but I'll get there. I know it may seem easy in your mind, but for me, this is a huge thing. On the 23rd, it marks 5 months since all of this began. There are many people in this world who are going through much worse, but it doesn't make my pain any less. To make things more interesting, between the kids getting sick, which is very hard physically for me to keep up with, everything in the house is breaking. My hearing aids, our washing machine, my glasses, which to Seth's credit he fixed 2 times. The first time he finagled them together, while the second literally broke apart while I was watching my bible study lesson and preparing to go to another one. Seth says so nonchalantly, "the devil must not want you to go." He ended up super gluing them back together and then wrapped them with black electrical tape. Seriously, I laughed so hard that I thought I might pee on the couch (I did not, thank you very much) at the ridiculousness of it all. As I got ready to go with my glue/taped glasses Seth informs me the cat peed on his shoes (to Bangle's credit, it hasn't happened since our "drive" to the humane society) and then Seth cleaned them up and ran them through the drier where the bottoms literally fell of (this happened after I came back from my study) and we just laughed. Normally I would have blew up and made a big deal, but when so many things are going on, all I can think of is my life would either make a great movie or a sit com. Between running the kids back and forth to doctors office, as well as myself and blah, blah, blah. It all became one big blah. I lost it at my study and the women were very encouraging. I try so hard to control my emotions when I see people, I don't want to be Kelly downer, but I guess we can only take so much. In all of this I fell behind on my other study. The one about David with Beth Moore. I haven't been able to get to my morning bible study, since my mornings are pretty rough. Again my Mother in Law (I don't know what I'd do with out her) encouraged me to get the on line videos to stay current. I figured as long as I did the work book, it would be just as good, but I promised her I'd do it, so I did. The funny thing was it took days to get the studies. Lifeways system went down and our order never went through and then when it did, the computer sent it to here and all I can say is, if you don't believe in dark forces battling for your soul, I'd have to to strongly disagree. Each time I try to focus on G-d, some obstacle comes my way to the point of my glasses literally breaking during my study. You see I listen with my eyes. I have hearing aids, but I read lips mostly. This video already wasn't captioned, which made it hard to hear, since Beth has a thick gorgeous Texas accent. So when my glasses broke, I really couldn't hear her and I had to shut it off. Okay, back to my story. Beth was talking about Psalm 62. We used to recite part of this to Elijah when he was alive. On this day that I began to watch this study my emotions were all over the place. I cried out to G-d and asked Him why these really huge things keep on happening to us. What did I do that was so bad and what haven't I learned? So when I heard this familiar verse, I felt as though His spirit said, "stop and listen." She went on to talk about David and how he wrote the psalms with all of his emotions, that he didn't censor himself to G-d. Also in his lamenting, he never forgot to continually cry out to G-d and most of all, praise and trust Him. Other than having a crazy King chasing after me, I kind of relate to David in the way that he expressed himself, minus the killing of people. Still he shared his whole heart with G-d and was faced with trial after trial with huge monumental consequences. Now, I am not David, but in his struggles G-d appeared to be molding David into the great king that he probably wouldn't have been. Not only without G-d by his side, but also that he had learned lessons that only he understood. The biggest thing that Beth was saying over and over that I felt G-d was shaking my mind to grasp is "In G-d alone!" I always seem to look for answers from people instead of looking fully to Him. People are not G-d, so no matter how wonderful they are, eventually they will do something to disappoint you. Especially those that you have higher expectations of. I have hit rock and a hard place with this gastroparesis. Even the nurse has said, there isn't much else we can do. I ask people of great faith many questions only to get the same answer that G-d Himself has been trying to tell me, Trust. Oh how hard that is for me, yet as I am being beginning to explore this, I know there will be great freedom when I enter into trusting Him. Rest. I have been fighting for so long. I forget the verse somewhere in the New Testament, but basically they speak of punching at the air. I feel I have been fighting so long that I can't stop swinging and it's only brought on that much more exhaustion and frustration. I believe a good swing is needed when you know what you are swinging at, but lately, I can't see my hand in front of me. I don't know what the future holds for me, only He knows what is going to happen. I could be healed tonight, or I could go to my grave sooner than I had ever imagined. I won't lie to you, I get scared. I want the future and it's hard to surrender that as I am having to bend my knee and TRUST that G-d has His perfect plan for me and it may not be what I wanted. I grieve for that control, yet I pray He will grace me with great faith and trust in Him, that I may bring glory to Him in every step I take, regardless of how painful it is. Beth spoke that we have battles that G-d alone wants only us to fight. I can still ask for prayers, encouragement, and support, but it is only me, that can fight this particular battle with Him, alone. So I have to put on my armor of faith and prepare myself for yet another fight for my life. I feel I am at the front of the line, my enemy is across for me, thirsting for me to deny my G-d and to give my soul to him. Every time I post, I come across a huge opposition and I have come to realize it has hindered me from posting more often. This takes a lot out of me, but I now realize, this is my gift. And I need to bring glory to G-d with my gift. I don't just sit down and post, these thing weigh on my mind and it takes a great deal of time. This one I have been writing for 3 days. Each day, I have had something come up, today it was a sudden onset of pain and nausea. While the evil one can create much damage, he is not equal to G-d. Not even close. So now after 32 years of hoping that others will rescue me, I am fully aware that while I need the community and support, is only G-d alone, that can rescue me. Greater is He who is in me, that he who is in the world. This is easy for me to remember when it's all sunshine and rainbows, but in the cloak of darkness is where the truth is being attempted to be snuffed out. Regardless of what others believe, I am learning I need to be more confident with who I am. Seth knows the true me and he says he is always surprised to see me in action in certain situations he knows that I would never let fly. While it is good to have restraint, it's also good to have confidence and boldness with respect. Before Eli and Aurora, I was overly confident and actually felt prideful in my aggressive nature. It is one thing to be confident and another to be aggressive. After the kids died, my confidence shattered. The only place I felt safe was in my writing. So often our parents would ask why I didn't communicate in person what I wrote for hundreds of others to see. I just couldn't. I didn't know how how. I need to learn to have confidence in who G-d made me to be, in G-d alone. Right now as I write this, the computer is trying to reject saving this post which tells me all the more, it needs to be posted.

Psalm 62

New International Version (NIV)

Psalm 62 For the director of music. For Jeduthun. A psalm of David.

¹ Truly my soul finds rest in God;
my salvation comes from him.
² Truly he is my rock and my salvation;
he is my fortress, I will never be shaken.

³ How long will you assault me?
Would all of you throw me down—
this leaning wall, this tottering fence?
⁴ Surely they intend to topple me
from my lofty place;
they take delight in lies.
With their mouths they bless,
but in their hearts they curse.^[b]

⁵ Yes, my soul, find rest in God;
my hope comes from him.
⁶ Truly he is my rock and my salvation;
he is my fortress, I will not be shaken.
⁷ My salvation and my honor depend on God^[c];
he is my mighty rock, my refuge.
⁸ Trust in him at all times, you people;
pour out your hearts to him,
for God is our refuge.

⁹ Surely the lowborn are but a breath,
the highborn are but a lie.
If weighed on a balance, they are nothing;
together they are only a breath.
¹⁰ Do not trust in extortion
or put vain hope in stolen goods;
though your riches increase,
do not set your heart on them.

¹¹ One thing God has spoken,
two things I have heard:
“Power belongs to you, God,
¹² and with you, Lord, is unfailing love”;
and, “You reward everyone
according to what they have done.”

So in this dear friends I ask for your prayers. I ask that you would pray for peace to fall upon me and our household and that the Lord would make Himself clearly known to me. Pray for us, since we know the enemy is always out like a prowling lion, waiting to steal, kill, and destroy. Also for hope, hope and a miracle. I thank you dear friend for walking beside me. While some may scratch their heads and wonder what kind of kool aid I might be drinking, I encourage you to believe. I don't know what kind of hardships you are going through, maybe you or your loved one is battling an illness, maybe you are all alone, maybe you are going through a divorce, or maybe you are just searching to be found. All I can say dear friend is, In G-d alone, I place my trust. Glory to G-d. Watch, pray, believe, and be amazed.

A Walk

As always, it's been crazy over here. We are trying to adapt to our "new normal." It's been beyond challenging. I haven't met my calories since 2 Tuesday's ago, which means more weight loss. I found the more anxious I get, the more damage I do, so I am really trying to find a source of stress relief. When I was pregnant with Elijah, a friend of ours taught me how to crochet. I attempted to make Eli a blanket, but instead it became his cape. I don't remember how any longer, but I am trying to come up with something to distract my wandering thoughts. Since being on the antibiotic, I can hardly leave the house. It's to unpredictable. I am trying hard to balance it out, since it does seem to help with moving my food out of my stomach. The tradeoff isn't pretty, but it's keeping me alive. I went on line to quick look up some natural remedies to aid in digestion. We have found that ginger root in the garlic press helps a little and adds some pizzaz to my hot water. In looking for some recipe and therapy ideas I came across the most discouraging info. Basically in an article they were expressing how gastroparesis patients are falling between the cracks and are being left behind. I guess they aren't doing many studies and are not even bothering looking for a cure. This alarmed me. In this day and age, you assume that there is always someone working on each crazy diagnosis and attempting to find relief for them. One guy wrote that even if you find the right med. that this is a progressive condition and that essentially your body will adapt to it and it will no longer be effective. I sat in the house all day yesterday, and lamented. I just assumed that this is as far as it will top out and that once I figure out my concoction, I'll stabilize. The depression hit me like a sledge hammer. Lately, I have been in so much pain that I haven't even had time to "go there" but I did, and it was ugly. I let G-d have it. I squawked, cried, reasoned, begged, and even expressed my anger and feelings of abandonment. Isaiah came home with a high fever from school, which now every time anyone gets sick, it becomes a huge threat to set me back even further. He loves school and gets so much out of it, I can't pull him. But how do you take care of a sick family when your gas tank is well below E? I would like to try complimentary therapies (acupuncture, holistic remedies) but everything is so expensive. To add the icing on the ever building cake, I stepped on my glasses and my hearing fell apart within 2 seconds of each other. I quit. Life keeps on happening whether you have a chronic condition or not. As I stepped into my XLarge girls pants and realized these too are getting to big, I lost it. I guess there is a Stephen King novel called Thinner or something like that. I have never read it, but a couple of people made references to it. I never thought being skinny could come at such a cost. Now that I have probably depressed the hoo ha out of you and please don't send me emails that you can't read my posts because of how depressing they are, I do have some good things to say. First is, I have been able to walk around the house and even got to vacuum! I was so excited! When you sit around a lot, you notice every little detail of your life especially house work. The house work was usually my job, so it's really fallen behind. After having a horrible bout on Tuesday night, that rendered me out of commission on Wednesday. But by Friday I had a tid bit of energy. I am learning on these days to really rejoice, to force myself to do small things that make me feel like I am accomplishing something. On this day, I grabbed the vacuum. With each dust bunny that got sucked up, I felt excitement pour through my body. I have been trying to do my hair on days I feel better, to give me an extra shot of confidence. I can't wait for the day when I can put some makeup on! I have been trying hard to read a story to the kids when I feel up to it and do up Aria's hair, beautician style. When you are suffering it's hard to see the good things, even when they are right in front of you. So instead of beating myself up for not handling things with the grace that I feel I should have, I am having to accept, I am going to have bad days and good days. Yesterday I was so excited to try a new food. I got my med ready and Seth and I tried to plan out our plan of action. So we pulled out some salmon and pureed it (if you think it sounds disgusting, your right) but at least I'd get to try something new! So I attempt to sit at the table and we begin to eat. Right away the kids started to complain about the food. We had cous cous and pureed sweet potatoes along side of it. So they are yelling and crying when I pop a bite in Aria's mouth and she says "hmmm, that's good!" Success! Two birds with one stone! Or so we thought. We have been trying hard to expose the kids to all sorts of food, to teach them to be grateful for what we have. So it's Isaiah's turn. We all stare at him to see what he is going to do. Right away he whimpers and moans. Finally Seth pops a bite in. It barely hits his mouth and he proceeds to throw up all over the table, at precisely the same time Aria accidentally smashes her glass cup all over the floor. Both kids are sobbing and my food looks just like what Isaiah threw up. My appetite was gone. One of the important things that this one woman has found with gastroparesis is that you need to control your stress level, especially when you are eating. We are instructed to eat small meals slowly and a calm environment. Yeah, not going to happen when you have 2 small children. Seth looks at me and suggests I might need to start eating in our bedroom, Oy. The other thing that is suggested is gentle exercise, such as walking, yoga, and I forget the other stuff. So today I picked up my non energetic bag of bones and walked around the block. As gloomy as it is outside, the temperature was lovely and it felt freeing to be outside. Other than appointments, I can't remember the last time I went outside. My stomach has stopped right now, so I wanted to see if it would help things move. I'll find out tonight if that part of it was successful, but it really calmed down, even with the kids in tow. Every day I am becoming more and more aware that short of a G-d given miracle (which I still believe could happen and pray for!) that this is the way it is for now. Instead of wishing it away, I am going to have to learn to cope with this hour by hour struggle. I am trying hard to look outside of myself and be interested in what is going on around me. It's more of a challenge than I thought. I love talking with people and hearing all that is going on with their life, but being so isolated, makes that less able to happen. Especially since my attention span has shortened quite a bit. I am praying for hope. Hope is something I desperately need. Without it, it makes everything so hard. As frustrated as I am with G-d about all of this and as un christian as it may seem, I have questioned Him. I still can't shake the fact that I still believe. The other day I was in so much pain and I kept on trying to envision Him standing by me and holding my hand, it got me through. It didn't hurt any less, but helped. I don't know why all of this is happening. All of this has made me acutely aware that there are some out there who are suffering ever greater than I can imagine and I long to comfort them. Before all of this I was so worried about my house not being big enough, I was too heavy, or I wish I had that wardrobe, or it's not fair that I don't have that. Now it all seems so silly. It's so easy for me to get caught up with the worldly things that I am constantly reminded, really don't matter. G-d gives us all a short time on this earth and I wonder how on earth I can make a difference before my time comes up. While money would be great to have and could really solve a lot of problems right now, how is my character? How is my soul? Am I really living the way I am supposed to? Obviously I haven't been or else I wouldn't have stressed my body out to the point of breaking it. Stress, what a waste. So I have been hitting some low notes lately and that's just going to happen, G-d understands. I always wondered why people with chronic conditions get so depressed, I get it now. The biggest thing I am learning is not to judge others. In so many situations I have assumed I'd handle it so differently, until I was faced with it myself. I am down, but not out. I am really having to face my worst enemy, fear, death, and pain. In this, I am clinging to the belief that G-d is at my side, even though right now, I can't see. So I am asking for those prayers to keep on coming, for G-d to not only heal me, but to show Himself to me and my family. Even though honestly sometimes I feel cursed, I know that I am blessed to have the love of G-d and those around me. I am praying this week I can eat and then some and that I can find a good stress reliever. I have so much to live for, my life has just begun and I am believing that my miracle will eventually come. Thank you for your prayers, your encouragement, and your help, we are so grateful and really need it. Know that I am thankful for you, know that you are loved, and know that G-d is always with us, even when we can't see.

Take two

Just keeping everyone up to date. I spoke with the nurse about restarting the antibiotic and things got lost in translation. They wanted me to take one full dose a day(which I think would do me a huge disservice). I already was only taking half doses, 3 times a day. So I have come to the conclusion to start with a quarter of the original dose with a probiotic. I just took my first dose. Say some prayers this does the trick without any adverse reactions.

These past days

I haven't forgotten about updating. Several times I have started to, but just haven't felt up to continuing. Since I have fallen off the face of the earth, I'll try to summarize what is going on. I had 2 attacks last week. I don't think I have ever had them so close together. With gastroparesis, any time you have an attack, you have to stop eating for at least one to two days and go on a clear liquid diet. Attack doesn't even seem like the word for it, attack actually sounds nice. It's more like pure hell, simply put. The words like nausea and pain can be thrown around so simply, but when I say pain or nausea, it means to the Nth degree. I am finding that it is either stress or diet that will trigger these. As most of you know, stress is a hard thing to escape. In fact, I have found, the more I try to avoid it, the more stressed out I get. Ironic. The attacks seem to come on without warning and with a vengeance that would make the toughest person fearful. I, a self professed foodie, have actually become afraid of food. I still crave it and literally dream about it. In each dream I have had, I could actually feel it and taste it and started to chew it (red bell pepper, tomato, and pine nuts) and the dreams were so real, that once I realized I was eating them, panic set in that I wasn't supposed to. I wake up with my teeth embedded in my bite splint (sexy, I know) and have to pull them out, only to realize that thankfully I didn't eat the food, but still, I can't eat:(..... With having the two attacks so close together, this blocked eating for several days and only increased the already dominate feeling of hunger, agitation, and longing. It blows my mind that I could be so nauseous to the point my knees buckle and I am crouched in the fetal position, yet be so hungry for food. The hard part with all of this is having only one bathroom in the house. Never in a million years would I have ever imagined how badly we need a second bathroom. It's not even a want, it's a need. I'll be in there sick as a dog, to hear one of my little kids chipmunk voices telling me they really have to go, and I can't do anything about it. Aria is still potty training (I don't want to even talk about it) and at one point I had to kick her out. She screamed and yelled and I can only guess how much humiliation and scarring that probably did for her, but she was just sitting there! So needles to say, I am out of the running for 2011 Mother of the year award. We are still are waiting for the Mayo Clinic to call, but finally contacted the doctor and reluctantly agreed to try the antibiotic Erythromycin. I have been beyond hesitant to do this for many reasons, but I bottomed out and do not want a Jejunal feeding tube. So we lined things up and Saturday I started to take it. With in a few hours I felt strange and my swallowing and sensation came back to parts of my stomach, I didn't even know were there. I didn't feel full! I could breathe! I didn't have anxiety! Each time I ate my foods (they still make you abide by the diet for a while) they went in and then I felt, NORMAL! I was so excited, to the point, I didn't want to say anything. I noticed that every time I ate, it was very audible and my stomach actually started to talk as loud as a person with a hearing problem. I figured, so what? Small price to pay, good. By the end of Saturday night, I was a bit nauseated, but still didn't feel like I was choking on my own throat, I was thrilled! By Sunday, I eagerly woke up and actually ran to my medicine as soon as I woke up and happily drank it down. I started to dream of all the foods I was finally going to try, Chinese fried rice, hummus, refried beans, oh how the list went on!! To make things even better, my women's bible study from church came over and helped Seth rake up the leaves in our yard. I felt like I had won the lottery. I had finally found my miracle, my magic potion!! Before my ladies had gotten to the house, I started to feel a bit funny and had to go and lay down. My stomach was getting louder and louder. Seriously, it sounded like banging pipes in an old house. I didn't give much thought until I realized, I was reacting to the antibiotic. I have been eating it with yogurt in the hopes the probiotics might slow things down, but then it hit. I'll spare the details, but you could hear my stomach across the room, plain as day. It wasn't talking back, it was yelling back in a very opinionated and angry tone. I'll spare you the details, but by this morning, I was a train wreck. When we called the doctor's office to report what had happened, the nurse replied "we have nothing left for you to try, if this doesn't work, that's it." I sat there stunned. We ended up having to call back several times, begging to see if we could back down the dose or combine it with something so the symptoms are less severe, but still haven't gotten a response. I told them how much it worked and I am willing to work with it, but we need a game plan. I am doing the best I can, and in this situation, there are no dramatics in any of this. This is straight up how it is, I am fighting to live. I had already only taken 1/2 of the recommended dose because I know my body, and thankfully I did or else I'd probably be in the ER right now. The crazy thing is, the stuff works, but now, how do we make it work without everything else?? I feel so close, yet so far! I barely have the strength to dress myself most days, let alone be fighting with the medical community to help. People aren't a one size fits all. I tend to be on the rare side and have a lot of complications. It is what it is, and whining about it, won't change anything. So, I am praying for divine intervention tonight. That some how G-d would give the doctor the right combination for me so that I can live again. On Saturday, I could physically breathe, this tells me, my breathing issues aren't all anxiety related. There really is a problem with some sort of signalling in my body. I have to say, I am so grateful for the support. You have no idea what a meal, raking of the lawn, garbage removal, laundry (I never thought I'd let anyone touch my undies!), child care, help, prayers, really do! Seriously, it has moved us to tears. The simple things in life that we did without thinking have now become such an obstacle. Seth and I just want to spend time together and having these things being taken out of the equation, has been a sanity saver. We are so burnt out and the help has been crucial to our survival. I am so grateful to G-d for His provisions, even if it's not in the way I had expected. This whole thing has been so humbling, G-d really does work in mysterious ways. It's been hard, because I want to do things the way I want them to be done and I can't. I no longer plan because my timing and His timing aren't the same. It's easy for me to get swept up in to the "I should be.... It's not fair...Why?" It doesn't do me any good. I have my moments, but have to keep on pressing my thoughts to the present and not the future. The bible is becoming more and more alive to me. Some scripture seems to have my thoughts written all over it. Since Eli, this hasn't really happened. I won't lie to you dear ones, I deal with fear. I go to places I shouldn't and they scare the hoo ha out of me. I never thought I would be battling for my life with something that I have never heard of. It's hard because some people have this and it barely affects them, why it's showing up the way it is on me, I don't know? All I know is I beg G-d for mercy every day. I know He is good, but this hurts so much. I have so much to be thankful for and I want to savor each blessing with enjoyment and I'll be honest, I've been in so much pain and it's hard to do. I don't believe that this is just a thing that has been dealt to me, I do feel that this is something that I need to over come. In all the turmoil, I feel so blessed to have those cheerleaders encouraging me, cheering me on, even when they don't see me. For those of you who have rallied around us, helped us, prayed for us, blessed us, you will never know the impact you have had on our lives. I just wish I could give back to each of you 10x's over what you have done for me. I am so grateful. I have the world's best husband, who carries me when I can't get up. Who dresses me, when I can't. Who cooks for me, takes care of the kids, cries with me, and holds me up every single day. I am grateful for each and every single child I have been allowed to be their Mother. All I can think is, I want to be there to help pick out Aria's wedding dress (no matter how much our styles conflict) and for Isaiah to see what profession he chooses to take the world by storm in. I want to grow old with my Seth and do silly banter all the way until our last breath with our hair white as snow. I want to laugh and cry with our friends and family and help carry them, when they are too tired. All I can say, is thank you Lord that I have lived to be 32 and I am so blessed. I don't want to think about gastroparesis anymore. I want to be able to help others and rejoice in this life that the Lord has blessed us with and truly learn what it is to be His child. Here I am pouring my heart out, and my son just ran by stark naked to the bath tub. How's that for a laugh?! As always I ask for your prayers, especially for the Lord to give this doctor the wisdom about this medicine. I see that miracle, it's so close I can taste it. Thank you all for your support, may the Lord bless you. On my knees, I ask you watch, pray, believe, and be amazed. May Your name be glorified dear Lord.

Hot Water

So here's what is going on. Never a dull moment in our house;) First lets start with a happy thing, I have been able to now eat, da da da dum! BAKED Cheddar Sour Cream and Chive chips!! I only can eat a few, but it's progress of yummy flavor. Oh flavor, how I have missed you! I smashed them up in my reduced fat cottage cheese and ooh la la, I thought I went to flavor town! It's not the most healthy option, but it gave me a sense of eating something normal. I have also been able to add to my juice collection a juiced strawberry, banana, apple drink. While I am not a fan of sweets to begin with, it's been nice to have a change. I had to put my carrot juice on hold, since I literally was changing colors. Just to be sure, while they checked my labs iron/hemoglobin, they are also checking out my liver and such. I find it crazy that in order to keep an eye on my anemia, they take so much of my much needed blood! I asked the Phlebotomist to leave some for me. This is one of the first times I actually almost passed out during the draw. I have NEVER had this problem. The poor woman just kept on asking me if I was alright and patiently waited till I could stand on my own. I noticed on my last draw that I could barely drive home, so this time after work, Seth drove me. I am so glad he came, because they weren't going to let me drive home. I am constantly cold. So cold to the point of heating up hot cups of water and carrying them around the house with me. I now wear my clothes, a bathrobe, and a blanket on me, most of the time. I can barely stand outside without being chilled to the bone. My parents saw what a hard time I was having and got me some thermal underwear. I never in a million years thought I'd be wearing thermal underwear in every day life. I am hoping they will help, since we have to keep the heat under a certain temp. for budget and Isaiah's allergies sake. He already has gotten a bad case of eczema that actually got infected with a staph/strep infection. I feel so bad for the little dude. He's already been on antibiotics for his ear infection and we have tried every cream under the sun, and now after seeing 3 doctors, they think they have found a good solution. I sure hope so, this whole going to doctor after doctor is quite taxing. To make matters even more interesting little Aria has come down with his chronic cough. We have been having to steam her in the middle of the night and stand outside with her on the front porch to help soothe her. Her little eyes have purple bags underneath them and she's a little more feisty than usual. It's been a while since Seth and I got a good nights rest, but we are trying to find the sweet moments in all of the craziness. Aria actually requested me for a snuggle. They rarely ask for me anymore, since I am mostly business and then have to go sit down, so it was nice to know I am needed. We are still trying to get all our papers transferred to Mayo Clinic, in the hopes that some one can help. We have literally been doing this all by faith. I don't know if it's an adult thing or a weird diagnosis thing, but it's been hard to set up a game plan. With Eli, before he was even born, we had a plan of attack. It was so regimented that really we had no say in anything, and looking back, for the most part, it helped. With this, we are so in the dark that we can't even see our hands in front of us. We don't really know how or where to really proceed, so we have been taking one step at a time in the hopes that the Lord will guide each step. I am sending files over to MN not even knowing how we are even going to get there or what needs to even be done. Part of me thinks I am nuts, the other part is at peace knowing this is what we feel G-d is leading us to do. The control freak in me is having to be tamed and I am having to trust I am fully in His hands. We are exhausted and we need help. I think our nervous systems have been previously fried, only we didn't know how much, till we needed to go and use it only to find a "NO OCCUPADO" sign on it's door step. I am doing the best I can and it's not enough. I am trying to just take one moment at a time, but with kids, you have to have some planning in place. The nausea and pain have come back off and on, so between the fatigue and all the emotions, I feel like we are twisting in the wind. It really is a survival of the fittest and right now, I am not making the grade. I still feel that things are going to get better, it's just a matter of when. I'll be honest, when you are tired and hungry, it doesn't make for the happiest of moods. But I am trying, I really am trying hard to ask G-d to change my attitude on how I see and deal with things. I could go into all the things that have gone wrong, but it just seems to bring me down even further. So, for now, I am going to sit bundled up with my hot water and be happy that it's clean and hot. As always I am asking for prayers (I won't stop) of healing, peace, trust, and guidance in all of this. So even now I am standing here, watching, praying, believing, and waiting to be amazed.