Taking Steps

I don't even know if anyone is interested in all of this anymore, but it makes me feel better to write, so here it goes. On the praise front, I have now been able to add cous cous and poached salmon to the list. The salmon didn't taste so great, since it had no seasoning, so it definitely tasted like fish. I normally love salmon on the grill basted with EVOO and dill, but for now, I can't, yet. I am thinking maybe this weekend trying some smoked salmon. I need to change things up. I think my diet is actually making me lose weight, due to the limit and the repetition. Seth made me a a pureed asparagus and potato low fat quiche. This is the first I have attempted a vegetable other than frozen pureed spinach, so we'll see how it goes. I am trying hard to push rice, since I am thinking I am too low on carbs and hoping this might gain some weight. I am in a size 0 and it's loose. We got my pre Albumin levels back and they looked normal, so that's awesome too. They still haven't given me any direction on what to do about the iron while I wait on my appt. with the other doctor. I have been praying for direction and still feel something is being missed. I don't know how to explain it, but I just do. I am learning after all these years to trust my instincts, I have rarely been wrong. So I spoke with a friend of mine who has been to Mayo 2 times in her life. Once for herself and and once for her daughter. She said both trips were worth it. She too has a lot of GI issues and has found that locally, when they can't find something, they just try to convince you that your a hypochondriac with anxiety. I am finding this to be the norm. I have spoken with a lot of people who haven't had cut and dried cases and they too had the same problems only to prove the doctors wrong. In my case, I am not saying they are wrong, I just feel things are being missed. She asked me if I had any swallow studies, allergy testing, intestinal testing, and several others done. When I replied no, she was quite surprised. I have been dragging my heals about going out of state. I don't want to wrack up mountains of debt, just to find out there isn't anything that can done. Nicely, I have been approached by concerned friends and family who have posed the question, "isn't it better to lose money and know you did everything you could?" That got me thinking. I don't want to have to be at death's door before anything gets done. I keep on challenging those close to me to try my diet for a week, heck even for a few days, and see how they feel. Not one person that I know of, has attempted it. I don't blame them. So I made the call the Mayo. I have to get all my info. faxed over and they go over it and call back a week later to let me know if it's worth the drive out. My friend said the nice thing about them is that you get all the testing done and they are used to seeing unique cases, and the specialist converse with each other to get a game plan. I am trying not to think about the cost at this point, it is my life after all, but it's hard not to. So we are going to pursue prayer on this front, because the only way that this can even happen, is if G-d makes a way. I am trying to be patient and listen, while being proactive as well. My skin is starting to turn yellow/orange thanks to my carrot juice, so I know I need to change things up and get my diet moving. I have been doing a bible study about David, and it's so amazing to see how faithful he was on waiting on G-d (not perfect). I lack patience and hate sitting still, and with all that has been going on, it's really all I can do. I find myself daydreaming of a do over of the last year, to change things I stressed out about, and can't help but wonder, would it have changed this? Pointless really. I get so caught up in the guilt of what could have or should have been, that I forget the present. Apparently, this is another thing to add to the list of things to overcome. To go through struggle while being grateful and gracious has been harder than I had ever imagined. Still, I am striving with G-d's provision of self control and patience, to keep on trying. I screw up, a lot. I keep on reminding myself that feelings aren't fact, and this is hard for my mind to accept. Right now Seth and the kids are carving pumpkins. They are finally old enough to appreciate the fun, and I am not with them. I had always looked forward to carving pumpkins so that I could roast the pumpkin sees with a little bit of salt. It was one of my favorite bed time snacks and actually helps aid sleeping! This year I won't be able to and that's been a bitter pill to swallow. Hopefully next year, I'll be able to. I keep on praying that this is a season that will pass. Just like winter (my least favorite season) it might be long and hard, but spring will come. My twisted bare limbs will come into fruition of beautiful leaves and fruit to harvest. I just have to focus on what to sow, joy or regret? Anger or peace? Etc... We all know what the right things are to pick, but for me, to put into action, is easier said than done. I want to leave of legacy of joy and peace, not this fear. I have cried out a lot to G-d lately, this has been a heavy burden and I so want it to be lighter. Last night Aria couldn't sleep, so I brought her into bed while we did our study. It just felt good to be so close, so warm. Today I brushed her hair several times and just took the time to enjoy doing it. I got to see her big blue eyes light up as she chattered away with her crest kid smile. Isaiah asked to play a game and normally I pass, but this time I got on the floor and watched him cheat. Yep, he cheated and then tried to get away with it. He hasn't tried to do this often so it's just interesting watching his facial expressions and seeing his mind in action. He's become such a little boy. While he still has those professor tendencies, he now is doing boy noises and seems to be looking for something to jump off of every time I turn around. They'd rather be out doors than watch TV. Every little jump or trick now needs to be announced and preformed. It's precious. They actually want to be with us. They want our approval. This only lasts for such a short amount of time, we just have to savor it. I love how they truly love to make a card for someone and how excited they get to actually be the ones to give it. To be a kid again, there's nothing like having that energy, innocence, and loyalty all wrapped into one tiny rosy faced little kid. I don't know what G-d has in store for me. Sometimes I wish I knew, other times, I am so glad I don't. All I know is that I am constantly being reminded this life isn't mine to live. Bottom line, it isn't about what I want, it's about what He wants for me. Some days I take 3 steps forward and some days I take 5 steps back, either way, He is still beside me. I don't know what your trials are, but I hope you know that G-d loves you. He loves you so much He sent His one and only son to die for you. He too is walking beside you and hears your cries as well as your laughter. While on some days it's easy for me to count the catastrophes, I also have to remember my blessings. My blessing far outshine the hardships and that can be easy for me to forget. As always we appreciate your prayers for healing, guidance, trust, and wisdom. Because even when I can't see, I still must believe.

Follow Up

I am making sure to keep you updated on my latest news. I hate it when you are left hanging and wondering what happened after this or that. First, Isaiah is doing much better. We are working with him in communicating not feeling well, instead of scaring the living daylights out of us (who needs a haunted house?). His cough is getting more junky, which I believe is good, but he still has some healing to do. I had my appt. today with Dr. F. He really is a great doctor and every time I don't want to like him, I do. He talked with us quite a bit about everything. He really gets that I am a foodie and empathizes. He acknowledged how skinny I was and gave us a plan of action. At 92 pounds, they tube feed, and that's it. We asked about about the pacemaker and I guess that was only for extreme cases and it pretty much failed. So much so, they shut the program down, so that alternative is out. He even offered us to go get a second opinion free of animosity! At this point, from what we have researched, he is doing everything he can. Reglan (nope), Domperidone (Uh uh), Erithromyacin? Possibly, but not to try until I gain some weight back. Pacemaker (out), Botox (insurance doesn't cover and no telling if I'd have a severe reaction), diet and stress management (yep, just where we were before). I did tell him about some symptoms to which he replied "huh, that's weird." Yay, weird, what every lady loves to hear. He said that my hemoglobin levels are low and we need to get this under control. This could also be adding unnecessarily to my lack of energy. I have tried every supplement under the sun and I can't digest iron. My diet blocks the high iron foods such as dark leafy greens, beef, and beans. So we are looking at IV iron. The problem is it can cause a reaction, to which seems to be an issue with most medications for me. I am also looking at having a procedure done to help as well, which we are presently trying to set up but have to see if I am strong enough to withstand it. He is going to be checking my Pre Albumin levels to see if I am malnourished and then we'll take it from there. I am beyond exhausted. I am hoping this will help remedy part of the situation and still holding on to hope. As I have said, I don't want to go to to tube feedings. Please lift me up in prayers that I can eat more varieties of foods without trouble and gain back some healthy weight. Also pray for me to find a better way to deal with my stress and clear direction in what to do. I need my hair back (seriously, I have a weird shaped head!) and my teeth are taking a beating. I find myself so cold all the time and I can't find any wool whole head to toe body suits with a just my face hanging out (hmmm, me looking like a sheep, it could be a new fashion trend!). The doctor even commented that my clothes not fitting. I look like I am playing dress up in someone elses clothes. Still, as frustrated as I am, I have to keep on looking up. I've got my humor (maybe I'll go on the road as a stand up comedian) and my loved ones, now I just have to find a hobby;) We really didn't find out anything new, but it's nice to know, I am doing everything I can do on my end. So now we wait, in hope, and expecting many miracles to come. Please keep us in your prayers and know that love is enough.

Eye of the Storm

We are exhausted. It's been quite a ride these last few months, but throw in common colds and ailments and it really adds to issues. As I have already explained in other posts we have been battling colds. Isaiah seems to always be affected the hardest due to his allergies. We are wondering if he may have asthma, but really don't know yet. We have taught him how to use a Neti Pot to gargle with salt water and is also on 2 allergy medications. We also have albuterol and saline for Eli's nebulizer that he uses through out the year, ever since he had RSV as a baby. So when he started to have a dry hacking cough, we figured it was just the cold heading out. That has hardly been the case. I must say, Isaiah has been blessed to never have an ear infection ever. I actually found myself thinking about it a few days ago. It always seems to be if I think about something, it tends to come a week later (hmmm, cure of gastroparesis and all our debt disappeared!) and sure enough, it came. Isaiah is a pretty good sleeper and I knew something was wrong when a few nights ago he woke up shrieking (I wouldn't be surprised if he woke the neighbors) incoherently, along with dry heaving. The hard part about Isaiah is when he isn't feeling well, every level of communication except, screaming and crying, shuts down. He has ALWAYS been this way. I think this is another factor in my germaphobia, is I know when he is ill, that if it gets bad enough, what we'll be facing. I know each child is a wreck when they are sick, but he is inconsolable. As a parent, you try hard to understand what is going on, and when your child is on the bed flopping around like a fish that has just been pulled from water along with a yowl that would make a tornado siren seem tame, let's just say, it frazzles the already fried nerves. He did this for several nights, but ran no fever. It was suggested it was probably a night terror, that is until the pieces of the puzzle finally came together. He has been dry coughing for a while, but by Saturday morning, he could barely speak without coughing his little lungs out. We barely got any sleep on Friday night and even did the breathing treatment with little success. We tried honey, Vicks, hot showers, cold air, you name it, we did it, with zero success. I figured by Saturday things should get better, but noticed he could barely get a breath in and called on call and was instructed to go to the Urgent Care. We have just switched Family Phy. to cut down on the long trip and thus I regret my decision. With our other Pede. they sent us to an after hours pediatric clinic as we have never had luck with just a regular Urgent Care. I had no knowledge they didn't participate until that moment. So Seth had to take Isaiah ASAP since the poor little dude looked like he had just ran a marathon. The doctor there to didn't have a lot for us to go on, but they did do a chest X-Ray (which came out clear) and also found (cue horns) a double ear infection. So he wrote a script for antibiotics and suggested using Delsym. I still can't figure out why they didn't give him a lidocaine breathing treatment to tame the cough, but I am not the doctor. So Seth brought him home, only now he is coughing way worse. We ended up calling back on call to see what to do next and were instructed to give him back to back breathing treatments. Normally, Albuterol makes him hyper and by this time he is hardly moving. Honestly, 5 years with the boy, and I have never seen him so lethargic. I kept on wondering if we should take him to the ER, but the on call said, unless it was asthma, there really isn't anything they could do. By now, I have hardly eaten (which I can't afford to do) and can barely see straight. Seth and I are practically going out of our minds to try and figure out how to soothe him. Little did we know the night was going to get worse. Yes, just when you think we have reached our "you never get more than you can handle," it did. We did so much stuff that honestly, I can barely remember what happened. All I know is in the middle of the night, he woke up shrieking, to which probably caused the earth tectonic plates to shift. We both ran to his room to him having blood running down his face and him barely able to breathe. This caused me to have a flashback to the day Eli died. I thought I was going to pass out. I was so shook up at the sight of him and lack of sleep and nutrition that I thought I had stepped into the gates of Hades. I begged Seth to get him to the ER (I thought we were going to lose him), but Seth knew to get him into the shower (this is where he has sought refuge) and let him stand there for a while and then eased into a bath. By the grace of G-d, we had 2 Popsicles in our house (We never have these) and found Aria's old numbing ear drops that haven't yet expired. I won't even go into the details of all that happened, heck, everything is still such a blur, but finally after pinning him down for the drops, he calmed down. All I know is that it's easy for Bull riders to stay on a bull, Isaiah would give them a run for their money. Man, he put up a fight and on top of that, if looks could kill, his could have. This would have been hard for me to deal with no matter what, but to have all my ongoing issues made this unbearable. I seriously have been so mad at G-d. I know He can handle it, so I won't lie about it. I truly took a few days and gave up. The fight in me left. It's been one thing after another and I am beyond the point of reason. The Gastroparesis, tongue/swallowing issues, medical debt, regular housing/life maintenance, emotions, general sicknesses, my hearing aid broke, oh and Aria gashed her chin open (thankfully a steri-strip and MIL advice was readily there). You have got to be kidding me!!! I am already disoriented and now I feel like I am even more confused due to not hearing what is going on. So I sat there and let go of hope. I did this for a few days and guess what? It sucked. Yeah, I said it. I came to the conclusion that I'd rather have hope in G-d, because the other thing, it's just too depressing. I didn't renounced Him, I just took a much needed break. I whined and pretty much just lied on the couch like a lump and stared off into space. This was beyond a few bad days. The odd thing was, it helped. I quickly realized how I'd rather have hope and keep swimming up stream then let go and let the tide take me out. Nothing great happened, in fact, things got worse. As we prayed for him, hope took over. It was just a tiny little life line, enough to keep us hanging on. Isaiah is doing a better today, nothing short of a miracle. He is still coughing quite a bit, but can breathe without difficulty (we'll see how tonight goes). I am so thankful. All this medical stuff plays mind games with me. I had been doing research and came across such really negative gastroparesis stuff (yes, I know I am not allowed, but I did it anyways) and it really shook me up. I am meeting with my GI tomorrow to discuss what to do next. I am praying that there is something that we aren't seeing that G-d will make clear to give me hope and redemption. Watching Isaiah scream for me the night before that he needed me, well, it solidifies the fact that I need to better. Not just for my comfort and dreams, but my kids need their Mom. Due to lack of sleep, I have no idea if any of this makes sense, all I can say is, over and over, we need prayers. Prayers for a miracle, prayers for hope, prayers for intervention, prayers for our future, prayers for resources, we are beyond desperate. I know the Lord is with us, even in my 3 days of silent treatment, I couldn't deny Him. He is there, even while I watch my life spin out of my control, I know He is there as frightened as I may be. We have so many things we have to consider. I am praying G-d will make a clear way. With Eli we were blessed enough to have Children's Special Health Care, so we didn't have to focus on how much his care cost. They don't have that for adults, so we really have to sit and weigh out options of where to go in care and how to treat. Lately, I have been waking up to nightmares that I ate food I wasn't supposed to. I wake up thinking it's a an odd dream only to realize that this all isn't a dream, things are complicated. I thank the Lord for my family, because as soon as I start to pity myself, my son, or husband come up to me and tell me how much they love me. Watching Isaiah gasping for breath last night shook my whole nervous system. To once again see one of my children struggling so hard made me realize how nothing in life is guaranteed. Just because we have been through so much, does not make me exempt from any more pain. No cliche sayings make it easier. It is, what it is. I am allowed to have bad days, but I have realized that once I start taking others for granted and enter into self pity, you are in trouble. It's a fine line that am walking. There is nothing wrong with asking for help. We live in a fast paced society and things get easily forgotten. I have to remember to stop going to my fall to method of anger and patiently wait on grace. Yelling and stressing will get me no where. In fact the more I see others do this, the more it reinforces, I want people to help me out of kindness and love, not out of fear and pity. This whole process is so painful, but I am learning I have to stop living out of the past and out of the future. I am not promised tomorrow, nor even 2 hours from now. All I have is each moment that is given to me, so now it's up to me to decide how I choose to spend it. This moment I am choosing to thank G-d for helping Isaiah (he is doing better). I am thankful that I have FB and this blog to ask others to pray when I am at my weakest. I am thankful that I have this appt. tomorrow and maybe something great might come out it. I am thankful for then and I am thankful for now. Even in my great pain, I have to remain thankful, because with out the hope of G-d, I am nothing. Please, keep us in your prayers.

Lord have Mercy

I am afraid of showering. Before you come up with silly remarks let me explain. My hair is falling out, rapidly. Kind of like it does after you have a baby. Each time that I wash it, after I am done, I have a webbing off dark hair entangled in my fingers. I have tried to wash it even gentler, but it seems not to make a difference. I don't know about you, but my hair has always been something that makes me feel pretty (when it cooperates). I have happy memories of going to the beauty school with my Grandmother and the women braiding my then, very long hair. A big plus with having a daughter, is being able to do her hair in styles I wish I could get away with. It brings me so much joy. I have been staying on top of vitamins and trying to make nutritious food choices to keep my body going. Still, it's not helping. To make matters worse, I weighed myself. With having the cold, I have taken extra precautions to stay on top of eating, but I ended up losing even more, dropping me below a 100 pounds. With me already struggling with swallowing coordination the cold caused my throat added inflammation causing me to feel like I was being choked for hours. Not the same kind as a panic attack, but something I can't even describe. My ENT got me in right away and was very empathetic to my situation, which I find rare in a specialist. He ended up putting a camera/tube up my nose and down my throat where he speculated throat spasms were probably the cause. Then the cold just escalated the symptoms that much more. I have been having stomach spasms as well, so I guess it's a simple enough explanation, for now. He gave me some meds to try and help release the spasm. I have also had shoulder, neck, and back spasms, but have been able to get that alleviated by our friend and Chiropractor without medication, which has be a G-d send. I just wish I could do it internally. My goal, getting healthy and getting off ALL medication. I am thankful we have it, but I went from being a party girl to a, I can't even take a Tylenol without being drowsy kind of lady. I have to be alert and available for my kids 24 hours a day. I need to know if they need me in the middle of the night, that I'll be able to help them out. On top of all those issues, as you know being sick, you don't get much sleep. After 3 days of broken up sleep, I was a wreck, both emotionally and physically. I lost it. I am already running on empty and this just sent me over the edge. I told Seth I quit eating and I am done, I just can't keep up. My mind is willing, but my body isn't able. I decided to be an ostrich and just bury myself head in the sand. I had several talks to G-d followed by silent treatment (He didn't seem to fazed by it). The kids were being kids and as usual, had left their stuff out. I asked several times for them to come and pick up their stuff. Their response was a slow saunter as they half tushed put things away. I was a kid that didn't have much growing up. I took care of what I had and cherished it (maybe a little too much), so to see the lack of care in their toys sent me reeling. I got up and flatly said, if you want me to pick this stuff up, I'll do it. But that means, I am taking it all out of here. I will donate this to other little boys and girls who want their stuff. As for the other stuff, you'll have to earn it back." Shockingly, I must have been running on adrenaline, because I gathered up their stuff and made my point. Seth came in about half way and I explained what had happened. I expected him to say I was over reacting, but instead, he agreed. Both the kids looked pretty shocked. I kept calm and just continued to work. Let's put it this way. They got the point. At first they cried, but then they just went about their business and actually started to play with each other, using their (wait for it) imaginations. I have decided my moment of insanity was actually a pretty good idea. We are going through their stuff and try maybe even sell some of it (especially the Thomas the Train stuff) since we have a ton of medical bills to pay off and almost zero storage space. We have decided that they are going to have to earn their toys back and if they aren't taken care of, they will be taken away. I probably sound like a jail warden, but I have had it. I don't think it's to much to expect a child to put away their toy once they are done playing with it. I want to raise them to appreciate things, not feel entitled. So weirdly enough, maybe some more good will come out of all this craziness (that or some therapy for years to come?) and in the end we'll see more positives than negatives. I have had some pretty bad days and I just feel so small. The panic and the fear have crept back in along with some bitterness and anger. This is a a catastrophic combination for me. All it breeds is negativity and this is the last place I need to be right now. I have been walking around saying "Lord have mercy, Christ have mercy." I probably look like a mad woman. Thankfully my kids love Michael W. Smith's song, so they just associate it with that. So I have began to call on others, something I am going to have to just accept needs to be done from time to time. I know when I don't hear from people, I just assume that everything is alright. So I am making the effort to say, I am not alright, I really need prayers. I feel like a child when I say this but, I just want to get better. I just want to be over flowing with peace and joy. I want to feel Him beside me and not question. I am having pain today. I don't know if the food just didn't digest or if it is spasms, but it's been pretty painful. In the last few minutes the burning has returned. Wooooo, I better get some aloe juice cause yowza, it's getting worse! I have to go, so I don't know if any of this makes any sense or what, I need prayers... I need a miracle.

Savoring

This weekend was wonderfully normal. I am learning to really savor the simple things in life and rejoice like I won a million dollars. We all ended up getting colds, but were still able to keep on smiling. G-d has blessed us with beautiful sunshine, which always makes the most mundane of day, a little easier to bear. I have started to live on the edge. One of favorite things before all of this,was to eat appetizers. When we went to a restaurant, more times than not, I'd order two appetizers instead of an entree. Two that I love are Olive Gardens chicken flat bread pizza and their spinach artichoke dip. I had a hankering for one and chatted with Seth about it. He encouraged me to go for it and that he'd be happy to eat the rest. We haven't really gone out since I got my diagnosis. Since I don't know what spices or fiber content is (they tell you calories and fat, but not fiber) in there, I figure why waste the money. I so badly have wanted deep fried mozzarella sticks, Chinese, and Mexican so bad, but don't dare try any of that, yet. For GP patients, every person is different in what they can handle. Most can't eat eggs and luncheon meat, but for me, it's just fine. So as I said before, trial and error. So Seth, with a glimmer in his eye, went and picked up the two items and brought them back home. I know what you are thinking, "oh no you didn't?" I respond with a "oh yes I did!" I paced around for a while and wondered if I was a fool to try, but then dived in. We pureed the spinach artichoke dip down while taking off the tomatoes and Seth brushed all the seeds off the bread. I took a small amount a smeared it on on piece of bread. I bit into it and ever receptor in my brain was shooting off like the 4th of July fireworks grand finale! It was spicier than I remember, so I only the one small round, but it was AMAZING!!! I found myself humming and dancing around with a stupid smile plastered on my face. I have to chew for a while especially with bread, but this made my two or three bites that much better. I then went to the flat bread and took one and picked off my ever so missed red bell peppers. I almost attempted them, but decided to start off small. I just had the one triangle, which was about 1/10 of the appetizer, but again, I found myself dancing around and truly enjoying what I was eating. I was so happy! Combined with the two appetizers, I might have only eaten 4 bites, but I so appreciated them. The best part? I did okay. Due to the fat content (I can only eat small amounts at a time) it sat for about 5 hours, but no pain! I can't do this all the time, because it does hinder me from eating all my calories due to having to miss a couple of meals. The balancing act is trying to figure out when my stomach is empty, because my brain still tells me I am hungry. If I eat to soon, then it seems to cause a mini flare up and even though I used the word mini, it's still horribly painful. I wish they had a stomach indicator that could set of a bell when my stomach has reached it's capacity. So a lot of times I will eat a few bites of food and be starving but in about an hour realize I am full. The biggest part that I have had to learn in all of this is self restraint. This is something I have never really had much of, and now I am required to master. It's actually overflowed in my watching my behavior, spend money, and other things, so it is a positive thing in a negative situation. I also ended up trying the Bolthouse Farms Mango Protein Plus and that made my taste buds sing! I tried just a small amount yesterday and a little more today. It was harder on my stomach, so I am not giving up on it yet. I can't help but wonder if I slowly slip in some things if I'll build up a tolerance to them. After researching more food ideas in all of this I am realizing the seriousness of this condition. I really have to stay on top of my food intake, to keep my health where it needs to be. I read up on the pacemaker and most of results from it were not successful, they even causes chronic pain and still didn't do what they needed it to do. I obviously want to avoid tube feedings, so I am trying hard to manage this with diet and stress modification. I am looking at acupuncture. I don't know how much it is or how successful it is, but at this point I will try anything. I know with going to Chiropractor how much surprising success I have had. She got me off of my pain meds for muscle spasms and migraines. So I can't help but give it a shot and try anything that is non evasive before I travel down the other roads. I met with a great friend of mine, who I vented my frustrations to. She reminded me that my progress may be slow, but things are getting better. When I am in pain it's hard to remember that, but I am praying hard for G-d to help me change my thought process. Seth is a optimistic for the most part and we all know optimistic people are happier. I long for that. Through all my trials I am learning quite a bit. I wish I didn't have to learn the hard way, but I have to make the best out of this situation or else I'll crawl into bed and never come back out. Now I just have to learn stress relieving techniques. I have noticed that not just diet affects my flare ups, but stress is definitely a contributing factor. I never knew stress could truly cause so much damage. As always I am still praying for that miracle, I still believe He can change all of this. In the meantime I am working on being proactive with doing the best that I can. This self control thing is harder than I ever imagined. I seriously am trying hard to keep myself in check, especially for my family's sake. I don't want my kids to feel punished for something they didn't cause. I love the story of the clay on the potter's wheel. I was watching Joel Osteen (I haven't seen much of his stuff) and he told the story of the clay and how it kept on having to get molded and put in the kiln and well he told it much better than me, but in the end it became something beautiful. So as much as all of this hurts, I try to keep reminding myself on those days that this is going to make me better in the end. I am trying so hard to rejoice extra on the days I feel better, because they really are something to be treasured. I am thrilled to be able to go on an extra outing, a family visit, poke around in the yard, laundry, or just plain keeping my cool when I want to explode. These are things I never payed much attention to. I just keep on wondering, did I do my best today (even if that means just getting dressed)? I am learning to appreciate my small hurdles that I used to never give a second thought to. I am learning it's better to try a couple of bites of something and truly appreciate it then to have giant portions of things and think twice about. Savoring. Yes, maybe I am learning to savor each little morsel of goodness that the Lord has to offer, that is called life. We have so much to be grateful for. Yet I know, most of the time I don't even realize it, that is, until it is gone. I don't know what the future will bring for me, let alone an hour from now. So right now, in this moment, I will just cherish the stillness of feeling normal and continue to believe, that G-d has a purpose for me.

Trial and Error

I am glad that I am able to write, without it, I'd think I would need to be locked up! I had a really great day on Wednesday, I actually made it to my new bible study where I was received with warm welcomes. G-d really came through, because I had no energy and really didn't think I'd make it. Thankfully, He made my morning go quite smoothly and the kids were elated to get out of the house to play. I was supposed to go to the dietician, but when I got to the hospital they informed me that it was going to be $112 and that insurance did not cover the visit. I sat there completely stunned. The woman who checked me in told me I needed to make a decision and take chances with my life. I seriously wanted to list off every "chance" I have taken and say some really not nice things to her. Thankfully, I was able to compose myself and just ignore her. My Mother In Law saved the day once again. She had called ahead of time to make sure I was able to find a dietician who already knew about gastroparesis. A lot of the times I have found people in the medical community have never even heard of this, so I concerned I'd be wasting my time. Sally (my MIL) actually spoke with the dietician and figured she probably didn't need to. I am glad she did, because the dietician came out and spoke with me because she had spoken with Sally. She ended up giving me a packet of info. and her card and was quite understanding that I couldn't do the appt. Both a plus and negative to the situation, she really didn't have anything new to tell me. I was hoping there was something I was missing that was staring me right in the face, but in reality, I am doing everything that can be done. It saved us money, but it also reinforced the frustration that there isn't something extra to do right now. Seth has been doing research and is finding some people have literally had their stomachs REMOVED! The odd thing was, they still found no relief. So, I am still praying hard for a miracle and that things get better. The dietician also emphasized what my dear friend Carol has said all along, just try something and see how it works. Trial and Error. I am going to have to stare fear in the face and just try things and begin to accept that I am going to have bad days. So I ate a little bit of roast beef on my sandwich and guess what? Error. I ate it for dinner and it was a small amount, but after a few hours I realized it wasn't budging. The best way I can describe this feeling is if you are claustrophobic. Imagine yourself in a tight place, completely sealed in and you can't budge. This is what it feels like for me, and inside out claustrophobia. It was so stuck, by the next morning, it had barely moved. Then the pain and literal sensation of burning all over my chest started and stay for a while. When I say burning, I do not mean heart burn. I have had heart burn all my life, this is a, I want to jump in ice cold water, burning that spreads over my whole chest area. I find myself wanting to scream it hurts so bad, and I have a high physical pain tolerance. To make things worse, my trachea started to have that sensation of a big piece of meat stuck in my throat feeling, which makes it hard for me to speak and swallow. The kids, of course, are completely unaware of what is going on, are running and playing while I am praying to G-d for mercy. I called my GI to let him know and they said he was out of the office and to call back tomorrow. What?? Ummm, kind of need some help here! Which I ended up calling and he was out of the office today as well, I guess he must be sick, so that was a wash. I know some of this may just be something I have to get used to, but even the GI is puzzled as to the swallowing thing. When I spoke with dietician she asked what meds I am on and I explained my issues. She informed me that it's quite common that most people can't tolerate the meds and don't even bother. In one sense, her statement made me feel so much better, I'm not crazy! On the other hand, it's reinforcing the reality that this isn't something that isn't easily going to go away, if at all. I have begun to realize there are three major ways, that Christians address major trials. One, is that G-d is punishing you. Two, that G-d is shaping you and actually putting your abilities to the test. Or three, that it's just life and there is not rhyme or reason, stuff just happens. I am actually clinging to the second one. It makes it easier for me to accept knowing that this will bring Him glory somehow and good will come out of this. All I know is every victory in bible seems to end with a feast. Eating is a huge part of how we celebrate. Now on top of that, with my speaking being so difficult, I can't help but cry out. Eating and speaking are our main ways of surviving, what on earth am I supposed to do? We have come across people that have had so many surgeries, seen every doc imaginable, and still no help. They seem so hopeless. I don't like that. No matter how much I complain, I am still hanging on to hope. I am still clinging to the belief that G-d will heal me from this. I have to. Everywhere I go, everything seems to be tied into food. It's on TV, get togethers, bill boards, ads, magazines, just talking with people, how do I fit in all of this? The fact that this is chronic is pretty taxing too. We all have timetables in which we get tired of dealing and hearing about the same things, I know I do. I'm tired of it. I don't want to think about this anymore. I don't want to worry every time I put something in my mouth, I am going to be doubled over in pain a few hours later. I don't want to pay anymore of Seth's hard earned money over to the doctors. I don't want to be sitting at home having to cancel get togethers because of not feeling well. I don't want to have to call him or anyone else over to take care of my kids because I am unable. It's frustrating having to depend on others to do things that seem so simple in my mind, because I have done them for years on my own. I don't want to complain, I just want to feel peaceful about all of this. The anxiety has actually gone down a little bit, probably because I am getting used to this I guess. Seth keeps on telling me not to think about the future and to just take one moment at a time. I know he's right, but my mind just takes off and they I get myself in a tizzy of "what if's." It's easier said than done. On top of that is the fact that me and my family are coming down with some sort of cold thingy. They are miserable to begin with, but now I have to figure out how to balance eating with not feeling well. Just simple things that I am going to have to learn to deal with. My go to tendency is to keep everyone quarantined, but now having Isaiah in Kindergarten, I am having to face my fear head on. He has to go to school. He's going to bring things back home, but how do I fight all of this off in an already weakened state? I know it all falls back to trusting G-d. I am thankful that He is real. I am thankful for the promises the He will keep. As much as I grumble and cry, He won't leave me. I am just venting my feelings, but at the end of the day, I know that He will see me through. I am determined to beat this, I won't go down without a fight. G-d gave me my strong personality for a reason. I have always felt frustrated that I am not more relaxed, but in my case, it's helped me keep on going. I am already hoping a year from now, I will be sitting down to a lovely feast celebrating the ability to be able to eat. I probably sound repetitious, but the venting helps. On a bright note, Seth met with Isaiah's teacher. She didn't have one bad thing to say. She said he is blending in wonderfully and that the kids love his smartness. I was concerned he might not have any friends, but she said he is doing great socially and academically. He is learning to become more physical in playing, which is awesome. He normally would rather sit down with a book than romp around. I am so glad we had Aria, since they seem to be the perfect playmates for each other. Aria keeps him physically moving, whereas Isaiah has taught her everything he knows. They have their moments of sibling stuff, but for the most part they beg to be with each other. They still want bunk beds, which cracks me up. Seth is working hard, as always. We all woke up this morning feeling cruddy, so I am praying that this is the worst of it and that we bounce back quickly. I love the whole season change thing, but it seems with the colder weather everyone gets sicker easier. I wonder, in tropical climates does the same thing happen? I am looking forward to some better days, I know they are out there. Seth and I were talking about how we have noticed things really do get better when prayers are asked for. Please continue to pray that I would be healed from this and that the Lord would redeem me and my family, in a great and positive way. I can't wait for boring, boring is good! I was going to be wild and try and get my nose pierced, but then thought I could be even more wild and try to eat some vegetable soup. I love soup, but they have warned me to stay away from the veges. I am hoping the soup with cook everything down well enough that I can tolerate it. Who would have thought my idea of living on the edge would be eating vegetables? I must be getting old. I thank you for allowing me to share how I feel and I hope your weekend is wonderful. May the Lord bless you and may you enjoy your life and see how blessed you really are.

So.....

I apologize for my delay. We have had a lot going on in the our lives right now, and writing is something that normally takes a great deal of time for me. For those of you who are connected with me on Facebook, you have been following Katelyn. The sweet little 7 year old, who shared a room in the NICU with Eli finally had her Colonoscopy done. Unfortunately, it did not goes as planned. I'll try to explain this briefly without totally chopping it up (forgive me Jade if this isn't said right) when undoing her colostomy, they ended up using her appendix as a portal. It is was meant to be used as a "flushing" area and not as a mickey button. Due to her low iron levels the staff was using it to send the iron to help her iron levels go up and basically when the doctor when in to look around, everything was black. So the poor girl went through all that prep for nothing. She hasn't eaten since Friday and is extremely hungry and now they are setting her up for another prep of the Go Lightly, which is hard on a regular person's system, let alone one wiped out little girl. On top of that, it means introducing the scope again, to her already delicate intestines. They are trying to locate the cause of the bleeding, but in doing this, there is risk for causing even further damage. Her iron levels are still hovering around 8, which 7.5 is transfusion level. Thankfully, she hasn't had to have one yet, like they initially told her Mom. Still, the threat looms. I used to think blood transfusions were no big deal, till Eli had to have all of his. So please hold Katelyn in your prayers as well as her Mom, Jade, who is exhausted and frustrated like any good Mom would be. So with all that going on, on top of that, there is my unpredictable situation. I so badly want to be at the hospital with them and can't due to my own issues, which is beyond frustrating. I did meet with a new family physician who admitted right off the bat, he probably wasn't going to be able to change my world. I liked his honesty and he also seemed to be aware of not making to many appts. due to all the co-pay/insurance issues. My other doctor was nice, but seemed to need to see me for every little thing and then had no real direction for me to go. Not that I blame her, but I just felt I needed to take the bull by the horns and advocate for myself so I can be here for my family. So my new doc has ordered a good chunk of labs to help me find out where my balance is off. I should get those results back next week. From talking to him, he already figured out that I wasn't getting enough salt! SALT!! Who would have thought something as simple as salt, has actually impaired my thinking and almost caused met to lose consciousness while I was driving! I need it to keep my blood pressure up. I have always consumed mass quantities of salt due to my kidney issues. When Eli was alive Dr. Bunchman had asked me if I liked really salty things like pickles, olives, chips. I told him, I'm like a deer who would rather go lick a salt lick than eat a cookie. He explained the whole biological thing behind it, but in essence, I need more than the usual person. With my whole meeting calories and not having high fat, I have cut out a good portion of my sodium. By the end of the night, I'd be like a car without any gas still trying to coast into town. I'd be sputtering and just about pass out. I kept on telling the other two doctors about this, but the only answer I got was that I was malnourished. This Doc just said so casually, "I don't know, try eating more salt." I went home and was able to eat some Baked Lays and some crab (which I haven't eaten in a month) and I perked up. I still feel like I ate a Thanksgiving dinner after even the smallest of meals, meaning, I get really exhausted. Apparently, I am not absorbing nutrients like I am supposed to, but I am meeting with a dietician tomorrow who I am hoping knows about this and can help me know how to balance my diet better. I have a long road ahead of me and I am riding on blind faith in G-d that He will see me through. I feel like I am in such a thick fog, that I can't even see on step ahead of me. I am reminded each day how important it is to trust in the Lord with each moment, or else I find the fear creeps in and whispers frightening thoughts. I still have my moments in which I have had to throw all my pride out the window and ask others to pray for me since I get desperate. It's hard, because I start to wonder if I have any faith that I need to ask others to pray, or I feel I am a burden and a whiner, which I know are lies. I keep on holding on to hope and that Glory will come to G-d through all of this. On some a positive note, I seem to be maintaining my weight, praise the Lord! Especially, with the salt. I don't know if it's true weight gain, but it added a couple of pounds which has made me feel better. As far as the next step we are looking at doing the Erythromyacin, which is an antibiotic. I am wary of this for two reasons, one, that when I was kid it did not agree with my system at all. Two, Elijah died due to antibiotic resistance (E Coli). I guess this is something you take in a lower dosage off an on. I don't know. Right now on good days on my own I can clear 1,500 calories, but when the bad days hit, it's a struggle. I know before I go to another medical specialist, I probably should retire all alternatives. I am just concerned to start this one, since I don't want the nausea/vomiting and all that jazz that comes along with taking an antibiotic to throw my weight down. My goal is to just be stabilized and then try the next step. I am working against the clock, so I know we have to try soon. I'd really love to just hold things to the point that even if it means not going back to my yummyliscious way of eating, if I could just eat the basics and maintain where I am at and still be healthy, for now, I'd be okay with that. Seth made pizza casserole yesterday. This is one of his favorites from when he was a child. It basically consists of pizza sauce, noodle, hamburger, and cheese. I don't know what else is in it, but he was happy to introduce it to the kids. Lately, I have been unfazed by food, until yesterday. If you know anything about me, I have had acid reflux for years, so me and tomatoes are not friends. I like them, they just don't like me. So Seth pulls the casserole out and I wanted to shove my face in that dish and lick out every last morsel!! I have never even liked this stuff, so I don't know why I wanted it so badly. I literally paced back and forth while they ate it. Aria was squirming in her seat and didn't want anything to do with it. I so badly wanted to take the plate and run and hide in a dark closet and eat it all by myself. Then I realized, why would I hide? Seth would be happy to see me eat with them. The problem would be hiding it from my stomach, so my stomach wouldn't know. Sounds a little nutty, but lack of food will do this to you. Seth kept on encouraging me to take a bite, but I didn't know how the acid would react to my stomach. With the cinnamon it was like someone had a blow torch on my whole chest area for hours and I just knew I am was to tired to sit up all night, especially with the kids being sick. So, I didn't (sigh). I have been trying not to shake up my diet to much during the week, I don't want to have to rely on others to watch my kids for my own selfish wants. It sure did smell good. I know my GI doc said it's a good thing that I still have an appetite, so that gives me hope that I will over come this. I have a lot that I am learning. I am so grateful to G-d for all the little things in my life that I have never noticed. I am also so grateful for our family and friends. I have felt so isolated with all of this, not because of people, but because of the circumstances. I have made new friends, connected deeply with family members, and even have reconnected with relationships from my past, I feel truly blessed. Without the support of everyone, this would be so much harder to handle. Our friend Tara did my hair like she always does and she even colored it this time, just to make me feel a little wild! It was so nice to look human for a change! On top of that, her and her family ended up watching the kids for us so Seth and I could have some down time. We were supposed to go to the beach, but I quickly realized I wasn't able to. Still, just having that time to be alone and knowing the kids were being played with was priceless! This family has been amazing to us and I am so grateful for all of their support and our kids just love being with them. Seth has been running nonstop since all of this started. As soon as he comes home from work, he has to watch the kids, cook, shop, he tries to pick up, and each night seems to end at midnight, even though he has to get up at 5 or 6 in the morning. I feel terrible and I try to help out where I can, but most of it falls on him. He rarely complains and just seems to be more concerned that I feel alright. Trust me, we have our moments when the kids are freaking out and it all comes down, but by the grace of G-d, we dust ourselves off and try again. Isaiah loves school. I am starting to see he needs more coaching on learning compassion and empathy. This is something I am struggling with teaching him, especially with my patience being so low. Still, he makes me laugh and is always good for a informative report on his latest interest. I have noticed he is desperate for my affection, so while I can't do a lot, he seems just as happy to have me sit and hold his hand. Aria, my little wild child. She is the queen of mimicking. You just have to show her one time how to do something and she masters it. She has more of a competitive streak in her. Isaiah and her race each other all the time, but since she is so much smaller, she always loses. We have tried to teach Isaiah to try and let her win sometimes, but as soon as the race starts, the drive to win is more on his mind than being nice to little sis. I got to give her props though, she still keeps on trying. She is much more determined to master things, especially if they are hard. They recently have started Awana, which they now love. I am trying hard to do well what I can do with them, even if it's just sitting and reading a book. I am into my new bible study about David and it is everything and more of what I had hoped it to be. I am excited to be meeting a new group of women and look forward to getting to know everyone and be SOCIAL! So now I just have to get over my fear of being embarrassed and just suck it up. I'd rather be involved with community and have some issues than sit at home and feeling isolated. I know sometimes I just might have to, but on those good days, I want to take full advantage of what life has to offer and try to get out, even if it's one day a week. I have a wonderful life as imperfect and frustrating as it can be, I am so grateful to G-d for allowing me to be here. Please continue to hold me and my family and Kate/Jade in your prayers. Trust, peace, and healing are at the tops of my list. Thank you for walking along side of me in this journey, your prayers and support are so important. It's so nice to know that I am not alone in all of this. Watch, pray, believe, and be amazed.

Quick Update

Things aren't going so well. We really need prayer for guidance and possibly going to U of M, Mayo, or Cleveland (I guess they have a good stomach thing). I am trying hard to hear G-d, so that I may obey. I don't know if He is showing me and I am just not seeing, but there are a lot of factors. First is, do I need to go out of state? Will our insurance come through? How are we going to afford the testing and lodging? What do I do with our kids? I know it seems like an easy decision but it really isn't. I just don't know what to do, but things aren't getting better. I am asking for prayers. I am so tired and I have so much to live for. Please ask the Lord to show me, and that things would not get worse, but better.

What to do next?

Today is a beautiful day outside. I am hoping to be able to force myself on a walk. My muscles are weak and barely there, so I am going to have to make and effort. I wanted to go to church today, but still haven't gotten up the strength to go. I really miss being there, the singing, just being surrounded by others hearing a message of hope and redemption. Maybe next week will be better. I am doing a quick fill in since I seem to have some new symptoms. Yesterday, I had a rather painful day, not sure why, didn't really eat anything different. Then late last night I felt the middle part of my throat start to feel kind of fat and numb, almost like I had gotten a shot of Novocaine in throat. This is not a good feeling for my already anxious tendencies. I thought maybe it was just a big burp that was stuck, but it wasn't. I have also had some other things that are cause for concern, so we finally called on call. I hate doing that. I feel so bad. I have some friends of ours who are on call and I see how much those calls can mess up their day. But, we had to. After discussing the other issue, we brought up the throat thing. He is wondering if it might be the Domperidone. I guess it can be a side effect. Yay (stating very flatly). I am at a crossroads with this stuff. I don't even know if it is really working do to how low of a dose I am on, but I do know I am having more interactions than we had anticipated. I don't know if I want to continue with this stuff anymore. This stuff is bringing me anything but peace. I am frustrated to say the least. When talking with the office I have asked them if all this is normal for my moderate diagnosis. They just said I have a really hard diagnosis. Seth said the doctor actually said he felt so bad for me. I just don't understand why things are getting worse? Now with my tongue thing, I am finding it hard to speak. I know what I want to say, it's just that it's almost to hard to coordinate my tongue to speak. It happens at the most unexpected times. I can be talking just fine and then, it just goes out. I am trying hard to get health at least up and going, so I can be with people, but the symptoms keep on getting more and more difficult to deal with. Most get togethers revolve around food. I have started to make a list of things I can eat. Cream of mushroom soup in the blender, plain baked potato, yogurt (plain or vanilla, no fruit), reduced fat cottage cheese, water crackers, rice crispy treats, rotisserie chicken breast only, some luncheon meat, and pureed spinach quiche with everything reduced down and little pie crust. Today, I am actually going to go on the suggestion of baby food and try some of the stage one's and see how they do. That's about it right now. I used to be able to eat several other things, but lately haven't. Bread and I really don't get along and I still can't figure out why. On the positive side we are saving a ton of money by not going out to eat anymore. Most places don't reveal their fiber content and when they do, the fat and fiber are pretty high. I miss to ambiance, but I can't justify spending $10 for a piece of chicken and a baked potato when I can make it at home and not have to worry there is extra spices or something that might backfire. We have been doing the book of Esther for bible study this summer. The whole things seems to revolve around parties. Each party is accompanied with wine and of course, food. Beth even spoke about that G-d has given us the joy of being able to eat food. Alright, so I bring my own, no biggie, better than through a tube. Other issues, well, my friends are understanding enough that if I need to dismiss myself, it'll be okay. But not being able to speak? Okay, the two things I think of that I love to do is eat and speak. I keep on trying to tell myself, maybe it's like the bible times where G-d is making me be on hold to learn something, but what if it doesn't get better? I feel like I am in a drawing where I am slowly getting rubbed out. I am trying hard to grasp at any good learning tools like, I need to be quiet and listen more. I need to not be a glutton and not eat so much. I am finding myself still praising the Lord while crying out to Him for His mercy. I need mercy! I finally quit weighing myself because it just caused more anxiety. I know that I am still losing, but I just had to decided that seeing the numbers dwindle just aggravated things. I look out my window and see everyone going on by and I can't help but wonder, where do I fit in in all of this? How can I help anyone if I can barely leave the house for an appt? I watching my neighbor work in their yard and all I can think is, I want to too! Yesterday, we took a short walk halfway down our block, when I had to turn around. The kids started to get upset since they wanted to go around the whole block, I could barely do a tenth. Today I feel defeated. I am trying to focus on what I wrote a few days back, since I know it still rings true. For now though, I don't know what else to really do. I know everyone feels bad and they don't know what to do, I don't know what to do either. I want to get together with people, but then my system is so darn unpredictable which either leads me to cancel or to feel embarrassed. I have to get better, I just have to! My kids need me, I need to get out of here!! This is just has to get better, right? I need some hope, I need prayers, I need healing. I still believe. I still believe. I am down, but not out. I have many, many more years to live and this is just a bump in the road, it's just got to be. Anyways, I really need some prayers that I would get better and that healing and good days would start, today. I have so much to live for and I still believe that G-d is good. I really need some miracles. I am just not sure what to do next. If the Domperidone is done, I have the idea of an antibiotic to take, which I don't feel any peace with. Then there is botox which can be injected into the stomach but insurance does not cover it and you need to do it every 3 months and then eventually you max out and it won't work anymore. The only other alternatives are surgery for the pacemaker or the feeding tube. I don't want either. I am praying so hard for G-d to intervene and make this all go away. I know compared to cancer, ALS, tumors, so many other things, this all probably doesn't seem like anything to really complain about. The hard part is, how little options there are and what little resources there are to fix this. We asked about going to U of M and the doctor said he'd gladly give us a referral but that they wouldn't have any new things to suggest. So back to G-d for healing, even if the symptoms could just get better and I could gain some good healthy weight. Sure I'll miss the yummy food and still have cravings but at least I'd be alive and able to enjoy doing regular old things. With child like faith, all I can say is "Lord I need you, please help me get better. I want to live." Love, Kelly