Last IVIG treatment

I am sitting in oncology having my final treatment. Tomorrow I go to get a gastric empting scan to see if it did anything for my gastroparesis. I do know I have had more good day than I have had in a very long time. If they decide it is useful I will have to do this every 3 months. If it does not do any good then I am back at square one proving there is nothing doctors can do and then when God heals me there will be no doubt He gets all the glory! 

I hope you all have a wonderful Christmas and thank you for the prayers and the part you play in my miracle!

God is so good! #faithofachild

I posted just yesterday that I am at the end of what modern medicine can do for me other than manage my symptoms. To get to the root of the problem I need prayer for a miracle of creation because I was born missing certain neurons. I still covet your prayers and really want to get this prayer to trend on twitter with the hashtag #faithofachild. I originally started that hashtag for the faith of my baby boy Elijah. Last night I got a call from my 20 year old son that could only be a God thing. He overheard the idea of a machine that can create neurons. Once they get it working then they can go in and create neurons for different reasons. Getting pregnant with Noah saved my life because I was in a very bad place physically, emotionally, and spiritually. He went into this field of study to find a cure for my incurable disease. It just baffles me how God's timing works for that very same day that I asked for creation of neurons my Noah unintentionally walks in on a meeting where they are talking about doing that very same thing. Please share my prayer with the hashtag #faithofachild because this is the faith of all of my children. Luke 18:16 Jesus said," Let the little children come to me, and do not forbid them; for of such things is the Kingdom of God."

Time for a miracle

This blog entry is going to be different. I want to ask everyone to pray and re-post this to everyone you know. We are praying for an honest to goodness creation miracle. This disease I have is incurable, and genetic. The root cause of all my problems is the fact that I am missing some neurons. I was born with this. Now as I pray, I ask everyone to pray that God will create neurons where they should have been but never were. Please join with me and ask for a miracle healing because there is nothing more the doctors can do. I am ready to stop existing and truly live. Live the life God created me to live. Please pray and share!

Today's IVIG

I am sitting here in Oncology getting my 4th treatment of IVIG and I really hope it is working. I have been having some strange pain in odd places. I really hope that it's because my nerves are waking up. I met a beautiful sweet spirit of a lady today who was here for IV antibiotics for an infection around her heart. It always amazes me how God brings people into your life and I would love it if you would all pray for her.Her name is Ladonnya. I pray that God pours out blessings on her until her cup is overflowing. I have 4 and a half hours to be here and hopefully I can take care of getting our rental car while ours is in the shop from the damage from the tornado.
I feel so blessed and honored to have now 4 amazing children, a wonderful, giving and loving husband, and it doesn't hurt that he is so gorgeous. I also feel blessed that all the people God brings into my life out of nowhere and at times I am a blessing to them, other times they are a blessing to me, but most of the time we are a blessing to each other.

Last week

I started my IVIG last week and I haven't been posting in here but have some in my GOFUNDME.  I had my gastric emptying scan last Monday and Started my IVIG Tuesday. The first treatment gave me quite a headache and some strong abdominal pain.  The second treatment on Wednesday gave me a massive 4 day migraine along with a low grade fever. Every time I moved it felt like my brain was rattling around in my head. I couldn't even make sense to myself. So I had to postpone my third treatment to Monday and now I will have one every Monday for the next 5 weeks. I hope and pray this is all worth it.
I do know something worth mentioning, through all I have been through God has used me in many peoples lives. It baffles me and exhilarates me to know that even now God is using me. When people come to me and tell me about something I shared with them and how it changed their lives I am so honored to be the vessel God uses to change lives. My amazing husband has the same gift only to watch God work through him, it's so much more powerful. I am thankful to say God uses our children in many amazing ways. Noah is a full time Youth Minister and soon he will be married to his sweet beautiful fiancee. Hope leads the FCS at school and sometimes feels like she is doing no good. But I see her heart and know she makes a difference wherever she goes. The holidays are coming up and that really brings out Hope and Elijah's giving spirit.
My pain is getting very strong right now but I really hope to keep up my blog better.

Finally IVIGG treatments

I have finally been approved for my IVIGG treatments. I am not sure what my cost will be but I have to have a gastric emptying study before and after. I will have to go to the hospital 3 days in a row for outpatient IVIGG and then for 5 weeks 1 day a week I will have treatments. I have no idea what my cost will be but the treatments are $20,000.00 a piece, plus my husband will have to take off work to take me to the hospital and from what I understand it takes over 4 hours for each treatment so we may run into lost pay as well, but this is the first promise of help in over 10 years! Anything you can do to help will be greatly appreciated! We hope to start this week and I should know after the first treatment if it helps.

Sorry

I just wanted everyone who follows me to know that I haven't been keeping up with my blog because I have been more than rxtremely sick. Please continue to pray for my family and myself. Pray specifically that the insurance company will approve my treatment. I did say it was $20,000 but that is just 1 treatment and I will ned 3 back to back daily and then 1 a week for 5 weeks. That is significantly more than I thought. I am not sure when I will be able to write again but please don't forget me. I will be back 

Day 613

I am more than grateful to have an amazing family. God has blessed me with a wonderful husband, Clint, and 3 brilliant beautiful (inside and out) children, Noah, Hope, and Elijah. I never want to take that for granted, or any blessing, gift, or talents God has given us. I still know God is going to heal me in His time so He gets all the glory. When I am healed I strongly desire to continue to rely on God and not get complacent. I want to use my newly found energy from being healed to focus on helping others with illness doctors don't understand, or just don't want to deal with it. I want to lead a full life whether it is planning and setting up events or finding new ways to get researchers working together with doctors and patients.

As of late I feel like I am living a bad country song. Clint had to get new tires because our front tires had no tread and he called them may pop tires, because they could pop at any moment. Two weeks passed and I hit a pothole and popped a brand new tire. The crazy thing is, this is not the first time that has happened, back when we had our minivan Clint bought new tires and a couple of weeks later, on the same road I popped a brand new tire. To be a person who can do very little most of the time, I seem to have a talent for making costly mistakes. With my mom passing and my sweet Noah's fiancee's dad passing the same day, stress has been really high. Our home needs so much tlc and Clint doesn't have the time or tools to take care of every project. He tirelessly works on one thing at a time and then something else falls apart.

I want to try something new here, instead of talking about everything that is wrong, I am going to speak God's promise to us. The bible says we have not because we ask not, or we ask without believing. I ask for complete healing. I ask for financial freedom. I ask for a second vehicle. Most importantly I ask that every soul that reads this will be blessed abundantly and that God will meet you where your needs are!

We are still trying to raise money for a very expensive treatment that will finally address the root of my problem instead of the symptoms. If anyone can help us come up with a challenge or campaign that would raise awareness please let us know. On here, www.honoppeah.com, on facebook, or google+.
Lots of Love and Laughter.
Bets

Day 610

I want to start by apologizing for not writing in here for a while. We lost my mother on August 28th and that same morning our oldest son Noah's fiancée Krystian lost her dad. We were expecting the loss of my mom she was in end stage Parkinson's and Diabetes. Wayne, Krystian's dad was very sudden and unexpected. The night before we were talking about pictures she wanted to take with her dad on her wedding day. 

My nausea and pain have been out of control. I am so excited about the possibility of this new treatment because all along all the doctors said they could do is treat my symptoms and not very well at that. Finally this treatment should work on my underlying AAN or Autonomic Autoimmune Neuropathy. This is what has been systematically shutting down my organs. The muscle is in good shape but my nerves are the problem. This treatment is very expensive and insurance companies don't like to pay for it so I have an ongoing fundraiser at my website www.honopeah.com. There is a PayPal button but if you prefer snail mail the address is on my contact page. 

I have to get well so I can focus on rare or orphan diseases. So many people know they are sick but the doctor try's to convince them that it is in their head. Sure some cases are hypochondria and I know eating disorders are very real, but people who come to the doctor because they can't hold down any food and are in severe pain are told they have an eating disorder and with these symptoms I am sure many people trust their doctor and truly believe they have an eating disorder when a simple gastric emptying test would show a real illness. I used to tell people I couldn't be anorexic because I like to eat too much and could never be bulimic because I couldn't stand the thought of wasting food. Now I don't eat because of the fear that it will magnify my illness. Sometimes I bloat up like I am 6 or 8 months pregnant within 5 minutes of eating or even just drinking something. With that in mind, it makes a very good case for anorexia. When I do eat, I eat as much as I want because I know it is going to come back up which makes a good case for bulimia. I have neither of these, my nerves to and in my stomach and small intestines don't work at all so they are paralyzed. 

I want to thank all of you for reading and supporting me in my fundraiser. If you have any comments or suggestions please let me know. Either on here or my website. My prayers go out to everyone who reads this that God may bless you and meet you where your needs are!

Fundraiser for new treatment

I have set up an on going event that is a fundraiser for a new treatment. Until now all the doctors knew how to do was treat my symptoms. All along I have fought tooth and nail to get help treating the cause of my problem and if this treatment works it works right away. There is an issue with my treatment it costs $20,000.00 per treatment and insurance doesn't like to pay for it but if they see success then they would be more likely to pay for subsequent treatments that I have to have varying from every 2 weeks to every 3 months. There is a PayPal donate button on my website www.honopeah.com. Please share this with anyone you think can help and know that even the smallest donations are so greatly appreciated.

Day 569

My nausea has gotten the best of me today, but I will not let it win. Instead I want to tell you a fun little neuance. My new website www.honopeah.com that I hope to extend to be a place for researchers, doctors, and patients to work together to diagnose and cure rare diseases. Okay so here's the funny part, when my daughter was in prek she wrote honopeah in sharpie on our hall book shelf. I had no idea what that word could possibly mean and when I found out I thought it was the sweetest thing in the world she loved her big brother so much that she combined their names, Hope and Noah the first 2 of hers then his and the second 2 of hers and his thus honopeah was born. I thought of all the websites out there that are so big and catchy so you don't forget them but most of them have no hidden meaning and now you know mine. 

Day 564 starving

I have a question for all of those with gastroparesis, Do you feel hungry even though you know if you eat you have to pay ten fold?  When I was a teenager I was tiny, I was a dancer and I would often forget to eat but I was never hungry. When I had children I had to set a specific schedule to eat so I didn't forget to feed my children. After that I ate because it was time or something smelled good or I had a craving but I never felt hunger. I now know true hunger. I had been literally starving to death before I got on IV nutrition. I didn't like the weight my IV nutrition added but the doctor said it was a good thing because that means it is working along with proof from my blood work. How do I get rid of this insatiable hunger? Two sips of water and I am barfing my guts out. Sometimes I don't eat for days and I still throw up. Right now I want a big fat juicy burger, some decadent deserts, and icecream. Sometimes my hunger is stronger than my nausea and pain combined. Anybody have any suggestions?

Day 563 waiting

"Wait for The Lord, be strong and take heart and wait I say for The Lord" Psalms 27:14. As I say that I have been given news that I am going to have to be more patient than ever. I was going to write immediately after that about how I know God will heal me in His time. I know as long as we Seek Him first he will provide for our needs. It is difficult for me to just let that go because I am a fixer and I want to make everything right and it seems the more I try to do to fix our problems the worse they get and the moment I hand them back to God, He fixes my mess. I know He is my Jehovah Rapha, my God who heals. I know he is my Jehovah Jiro, my God who provides. I know he is Agape, love without conditions or expectations. Knowing all of this I am still weary from waiting, but wait is His answer to me right now, so I wait expectantly knowing He will meet our needs in His perfect time. 

Our home is small but has always been and will always be a safe haven for those who need it. We believe in a drama free zone with no yelling or ugliness. We expect nothing from those we give a place to stay, or food to take, or meet whatever their need may be. Our mission is going to grow much larger in time. I have a vision of a place large enough to be rest for the weary, food for the hungry, and hope for the hopeless. God only knows how we are going to get to that point, He only knows the timing. Until then we will wait. My illness has kept me from taking care of my family and my home in any way. I was the fun mom that all the kids loved to come and play. I cleaned diligently singing songs of praise. I prepared food and included my children in baking cookies, making candy, and even cooking meals with me making it fun. I was the wife, mother, and overall woman God created me to be. At this point I feel like a bump on a log. Sometimes I can't even get up to walk to the bathroom without blacking out. All I want is to be the person God created me to be.

I started this blog with one goal, as the name says I am counting down the days it will take for God to heal me. I know I don't deserve His healing or provision, but through His grace He gives these freely. I pray that everyone who reads this blog, whether you are sick or know someone who is sick, whatever the reason for reading, know I pray diligently for you.

If you believe in my cause and want to help there is a PayPal donate button. I am not sure if my mailing address is on here but it is on my new site www.honopeah.com. I built that site to bring researchers, doctors, and patients together to understand rare diseases and find cures. I know I need to revise it in order to make that happen, but with God's help I know the world will be changed through this. 

Day 560

I want to write about a very strange but very real dream I had the other night. I wasn't in it except as a witness. There were two couples who vacationed together every year and while they were on vacation before they went to bed for the evening they would gather together in prayer and immediately after the prayer one of the husbands said he had a announcement to make and you could see his wife well up with tears. The man finally got the words out, "you know I have been batteling  throat cancer for a long time now, but God has healed me. The doctors can't explain it other than it is a true miricle." I woke up with a sore throat and just remember thanking God for healing that man, over and over. 

I know of so many young people with my condition along with other complications that don't survive this every year, and I know God is going to heal me, but I can't help but wonder why I will be healed when all these sweet lovely young people are not healed. I know every breath I take is God's grace alone and I hope and pray that they can use the study I was in to find a cure for this wretched disease. I really want to make a difference in people's lives. I never want to take for granted all the blessings God gives our family each and every day. I know from studying the Bible that He uses those who are weak so there is no doubt that God gets all the glory. I am weak and even though I don't know how right now, I do know He will use me to help people in my situation or worse situatuations. Forgive me if I use this forum to rant sometimes but I am only human and I do get scared and angry and weary and sometimes I have such strong hunger pains but know if I eat it is just going to make me even more sick. I hope if you read this blog it will be a blessing to you and I pray for every soul that reads this blog that God would meet you where your needs are and bless you abundantly. 

Day 555

I have been sick for so long it is hard to distinguish that from my life but my illness is not my life and my live is not my illness. I am so proud to the the wife of such an amazing versatile man. He works with computers but comes home and builds a room so we can have our own space. Recently he has been remodeling Elijah's room and built him a loft bed that would have been $4,000. I can't wait to post pictures of the finished product. I am so proud of him and love him so much. Then I have my amazingly brilliant children. I could brag on them for days but if you know them you are bragging on them for me, that's how amazing they are. I have been a baker, a banker, a teacher, a children's minister, but my most important job has been wife and mother and thank God I can still do that job no matter how sick I am. I woke up this morning feeling like I have been punched in the gut 100 times in my sleep I still know God will heal me I know it will be His perfect timing I just hope it's sooner rather than later. 

Day 544

My heart is filled with ache. My sweet wonderful uncle Bill Lofton is in CCU scheduled to have a quadrupal bypass in th morning. Please pray for him and his family. I have never mentioned this to anyone but them but we chose Cindy and Bill to take care of our children if anything happened to us. That is how highly we think of them and how much we love them. To top that off my mom is back in the hospital and they have asked her if she wants to be put on a ventilator. For those of you that don't know, mom has Parkinson's, diabetes, and a whole bunch of other problems. Please keep my family in your prayers and pray that I can stay strong enough for my babies. I cannot fall apart physically or emotionally right now. I tend to eat when I am upset and eating and my body don't mix and at this point there is no way I can end up in the hospital. When most people ask you to pray for them a common response is that is the least I can do for you, but I always say no, that is the most you can do for me. 

Day 532

This is going to be a wonderful but bitter sweet 4th. My Granny and Grandad were married on the 4th. My granny is the epitome of Grace and love. My grandad served in World War II and the Korean War. He was such an amazing man, not only doing everything for his family, but serving as a Shriner and being there for families all over, praying with them, rejoicing in recovery, and mourning when someone he may have only know a week is lost. 

While we were in Arizona going to the Mayo Clinic he passed away. Since then we all rally around our granny and keep making all the special occasions, special. I have a good feeling that this is going to be one of the best ever. 

My youngest brother and his new wife are coming in early under sad circumstances. Someone he held very near and dear to his heart has passed away. 

As for my health, to look at my bloodwork I am better than normal but my body tells me different, when I am to weak to move or shaking in pain or losing 15lbs in less than 2 weeks, I know something is not right but there is nothing any doctor will change because my blood work looks so great. The worst is when people say, "but you don't look sick"  but I suppose it is what it is.  

Day 525

Sorry it has been so long. I am having some serious medical problems that the doctors are not taking very serious. My home health nurse was very upset when she heard what I was going through but my GI still just wants to put in a peg tube. One of the top Gastroparesis doctors told me years ago I was not a good canidate for a peg because I have no motility in my stomach or small bowel. I know this is pretty serious because I have been throwing up "coffee grounds" basically blood and stomach and esophagus lining. I have also lost 15lbs in a week and a half. I want to get this unnecessary weight off but I know that much that fast is not healthy. My nurse was concerned how pale I was and that my blood pressure that usually runs low was high and my pulse was high. If I just go to the hospital here I know they won't do anything. 

Tomorrow is Wednesday the 25th and I know with every fiber of my being that God's blessings are going to be poured out on our family. I can't wait to share as our cup will run over. Our family is so blessed and we will never take for granted all of the blessings God has and will bestow upon us. 

Day 505

I know I haven't posted in a while. The condition I am in at this point is going to take some time to get over. It feels like someone took a cheese grater to the inside of my esophagus, stomach, and intestines. I hope there is no irriputable damage but I am on the right track to get this latest problem solved, like I said it is going to take some time to heal that. 

Noah is working as a lumberjack and a youth director this summer. The youth director I can see and I know he is young and strong and this hard labor will be good for him but it does scare me because he is just so brilliant, but I know God won't allow any harm to come to him.

I think Hope is enjoying her summer and I know Elijah is. He has friends coming and going all day. All of them are ready for the pool. 

I still believe with all my heart God has a plan for me. Right now it is to be here and enjoy my family, but He has blessed me with so many different talents and I know that soon I will be able to put them to good use. 

Day 488

I feel very blessed today. After my visit to the pain clinic they set up an appointment to do target point injections and I am really hopeful that will help get my pain under control. I go to the GI doctor Tuesday and I really hope we can come up with a plan to get my nausea under control. Since my main doc is no longer seeing patients I have to find someone to take care of my migraines.  I am also very hopeful that I am going to be able to launch a spotlight for those with rare diseases and create a website with my computer genius hubby's help to open a non-profit and eventually reach the world stage to help researchers, doctors, and patients to work in conjunction with one another in a way that is much more simple. Hopefully to cut through the red tape and years of doctors saying either I can't find anything wrong with you or there is nothing more I can do for you.
On another note I am so excited the kids are getting out of school! I feel my life is full when my house is full with all of my babies, and I can't wait for our visit from Misty!!! I really hope this summer we will get an opportunity to visit all of my brothers and sister and family!
I go to the neurologist in July and really hope he can get to the bottom of my underlying autonomic dysfunction. I am so ready to stop just being and get to truly living. Then I feel like I can really help others with rare diseases. Everything I set my mind to before I got sick, whether creating my own line of cookies, perfecting my Christmas candy, teaching pre-k 3, homeschooling, being a personal banker, whatever the task I always pushed myself to be better than the best. I know all of that was by the grace of God alone and I also know that by the grace of God I will be able to fulfill His will in changing the way the world looks at sick people that don't look sick. I know I still have a long journey ahead of me and I pray I will glean ever lesson, every pain, everything I need to teuly make a difference in this world.

Day 484

I haven.t written in a while because I have been so weak. These past few weeks my illness has gone from bad to worse. I can't even hold down a few sips of water and my insides feel like they are about to burst. But I don't want to write about all that right now. I used to write poetry all the time and would like to write a poem about after I am healed.

The Scar

Our bodies serve as a road map to our life

Every stretch mark, every wrinkle, every scar

They tell of all our happiness and strife

A line drawn from my sternum to my naval

Twice opened for a promise and a loss

Years of pain and sorrow compound

And this line is left as a label

A memory of the days I didn't live

I could only find a way to be

I bear it to show all I have to give

To remind me not to waste another day

For a promise of the next is never there

So I consume every second in every way

I can only hope this scar will lead to that

For now I am in the days I do not live

But when I am healed 

This scar I will use as a fact

God's promises are true

I will not waste away 

I will shine in the body He made new

Day 467 @NBCTheVoice #faithofachild

If anyone finds their way to this blog via The Voice, thanks @blakeshelton for giving me an avenue to have a voice for those who do not have one for themselves. From my personal experience of going to doctors for 10 years who all say they don't know what's wrong with me, then another 6 years after with a diagnosis and all the way to the top, "There's nothing I can do for you." My heart goes out to those on a similar journey and feel so lost and voiceless. I know some people have eating disorders but I can't even begin to fathom the number of young girls and boys who don't understand why they can't hold down food and trust a doctor that makes them believe it is an eating disorder. There are so many rare diseases that doctors don't have the tools to diagnose or refuse to be bothered with. I know there are many good doctors in this world who truly want to help their patients but cannot. I want to be that voice, to connect researchers with doctors and patients to come to a common goal. I am only one voice, but isn't that how every truly great things come to pass, with one small voice and one giant heart!

Day 461

I have been awake most of the night so I decided I would catch up on some Bible reading and praying the Scriptures. The final one I went to was Proverbs 31. Long ago I memorized Proverbers 31:10-31 and have strived to be the wife of noble character. This time I started with verse 1 and I remembered something I was told long ago. Since the chapter is 31 and it has 31 verses then it has a specific verse for everyone's birthday and when I got to verse 8 even though I had read it so many times before, it blew my mind. Open your mouth for the speechless, In the cause of all who are appointed to die. (Proverbs 31:8 NKJV). I have long said I want to be a voice for those who have none, who have a rare disease that doctors either don't understand or care to help. I have heard more times than I can count, "There's nothing I can do for you." I have also heard that I must be lying or that I was just a drug seeker when I abhor drugs but endure the ones I must to give me some semblance of a life. So whether the Proverbs 31 verse of your birthday means anything to you, mine means the world to me and it took me until now to even begin to understand it. God is so creative, if you don't believe me look at this majestic world, look at a zebra, look in the mirror! It's so funny how He can use His very word to show you the why to it all. I get it, do you?

Day 460

As most of you know I had a 5 hour iron infusion Thursday. Friday I felt alive for the first time in such a long time. I admit I did way too much and our family had an amazing Easter weekend! Not only did we have all our babies, yes even the 19 year old baby, home; but we got to visit so much of our family and I was lucid and well enough to enjoy it. I am feeling pretty wiped out now but it was worth every second soaking up my family! 

I know how easy it is to get negative when you have dealt with so much for so long and I know I have been very down and negative lately. Thank you so much for your prayers not only that I would feel better but that I would stop being negative and enjoy every moment for what it is. My sweet aunt Ann told me I need to get outside and soak up some vitamin D and I made a joke saying I was so fair skinned that I was afraid I would blind people and her graceful response to that was that my fair skin is a sign of roality. She is right about that because I am royal, child of the King of kings and Lord of lords, a child of the most high God! I don't pretend to understand His plan for our lives or how or when He will heal me but I know He has a plan for a future and a hope and He will heal me in His time. Until then I want nothing more than for our family to be at the center of God's will and to give them everything possible in my condition. Time for me to open my mouth with wisdom and on my tongue to be the law of kindness. Those words are much easier said than done especially when you are very ill but I will do the best I can with every day that I have and appreciate you prayer helping to keep me from going negative. I pray for everyone who reads this, whether you are ill, sad, or whatever you need may be, I pray that God will meet you where your needs are. 

Day 448

At the moment I am clear headed, in no pain, feel no nausea. It feels strange to feel normal. I want to comment on a post I tweeted and sent to FB on why I felt that way. It breaks my heart to know who I used to be, who I should be, who this illness has taken from me and my family. A moment of clarity forces me to mourn the life I haven't lived in so long. Will this last a few hours? A few days? Longer? Or will I go right back where I was into the fog of my illness? Could this be the mirical healing I have been anticipating for so long? I know I will be healed. As I am writing this my pain intensifies. I suppose 4 days of sleep gives a bit of clarity but that clarity tears me up inside. I just really miss me, the real me, I want me back so bad. 

Day 441

Sorry I haven't been keeping up. I have been having a rough go at it lately and I am having a hard time trying to come up with something positive to say. I just wanted to let you know I am still here and I truly appreciate your support, prayers, and the time you take to read this. 

The thing is I don't want this to be a sob story, never have. Not a poor me or whatever. This is a journey to the day when by God's will alone I will be healed, but who wants to hear how I can't keep my pain and nausea under control, how I throw up every single day, sometimes up to 8 times a day. Who wants to hear how I am too weak to get up and walk to the bathroom without holding onto the wall, to weak to get up and clean a mess that is driving me insane. 

I'm just so weary. Sinking into a deep dark hole that I can't do anything about. I used to be so vibrant, done so many jobs, cleaned rather I was singing or fussing, put together elaborate parties, had so much fun with my family. I miss me so much. I want to live, really live, not just be. 

So, I think you get the drift. I don't post because I just can't find my sweet sweet spirit that has changed so many peoples lives. People would ask how I was and the response was always with a huge smile, wonderful. Now I dread that question because I just want to scream and cry and say, you really don't want know. Instead I just say ok or not so good. Right now my pain is so strong that it is blurring my vision so I guess I need to stop typing before it turns to jibberish, not that what I am saying is much better. 

Anyway, if I miss some days now you know why. I hope you will stick with me through this journey and I find the poetic voice God blessed me with. 

Day 429 part 2

I got to sleep at 4 am and didn't want to get up and go to the doctor but I did and after dropping Hope off at school and Clint at work my doctor called in sick today so I have to wait until tomorrow to see him. The good news is Elijah and I got to spend the morning together in town and even got to go see Amanda's mom. I forgot how week I have been and when we went into Best Buy to look around it hit me and I knew I couldn't collapse in the store and cause all that drama so we found an XBox One set up so I let Elijah play while I sat on the floor in the middle of the isle like an idiot. Then I remembered how hard it is these days to get off the floor. I finally got myself together and we went to the car to sit and listen to some tunes on The Cross on the last day of their spring shareathon. Finally I was able to go get Clint and he brought me home to rest before we went to see the GI doc. That was the most promising visit I have had in a while. He will sign off on my TPN and IV meds as long as the company has certified nutritionists, diations, nurses, and pharmacists. He is also getting me a visit with a really good local neurologist that if he cannot help me he can send me to somebody who can. Baby steps but at this point they are the most beautiful steps I have seen in a while. Hopefully I will sleep tonight and hav a good doctor visit tomorrow. Thank God I have my wonderful husband to take care of me when I need it the most. 

My moms health is not so good so please pray for her. They decided not to do the heart cath today because she didn't have enough blood. 

On a much better note I am so proud of my Noah. He was awarded Freshman Engineer of the Year out of 400 students in the hardest program Tech has to offer! His character and brilliance are true gifts from God! I just have the most amazing family!

Day 429

Yesterday was quite a doozy. After being up all night Monday with my thoughts an hour after I finally went to sleep 9am I got a call from my dad saying mom was in the hospital with chest pains. I had my usual insomnia migraine and I got some very disheartening news about my medical situation. I took care of all the much needed business that I could after about an hour of sleep then my body made a choice, break down or shut down, so I just went to sleep. I awoke 2 hours later and had a nice evening with my family. Tuesday night I had a full night of sleep and Wedbesday I awoke made sure Elijah had food talked to the bank then shut down again. This time I slept all day and most of the evening so I am not surprised that I am awake. The problem is that in just a few hours I have to get up and take Hope to School and Clint to work so I can go to one of my 2 doctor appointments tomorrow and I am so nervous because I have been hitting so many brick walls so hard lately that I am afraid I might lose the best doctor I ever had because like all the others there is nothing he can do but help me manage the symptoms and my symptoms are out of control with everything we are throwing at them. I have another doctor visit Friday.  I am afraid of every one of these appointments, have no idea what to expect and less and less reason to be hopeful. I put a call in to the neurologist in New Orleans who said he couldn't help me but knew a doctor that was a guru in my condition. He referred me last year and the week before the appointment my insurance refused to cover it. Now that I have new insurance I tried to set up the appointment on my own at my local doctors advise but the wait list was so long they were not seeing any new patients. I am still hopeful that either my dr or this neurologist can get me an appointment with the guru or someone else who can help. I just hope I don't break down completely and have no words for my doctor. Our house is falling apart right along with my body and there is nothing I can do about either one of these situations so here I go. I let it go, give it all to God and don't want to take any of it back. Lord, I need you now more than ever. Only You have the power to heal me and fulfill the desire You put in my heart! It's all yours, I won't try to do it my way anymore. I wait for You, I give it all to You, Your will no matter what that may be is the only will I want!

Day 427

Here I am at almost 4am awake and alone with my thoughts and my pain and other lovely symptoms. Even though I am awake I am so weak that I have to hold on to the wall just to make it down the hall to the bathroom. Sometimes I will go 2 or 3 days with little or no sleep, other times I will sleep for that long only waking up a few hours in between. I feel like I am banging my head against a brick wall just trying to find a doctor that will understand and care about my case. Someone that can help me. I know God has a plan, I just wish He would clue me in even just a little bit. This I do know, I am one more day closer to my healing than I was yesterday. It is so humbling and awesome to know that the God that created everything, every universe, knows me and cares for me... Less than a speck of dust in the majesty of it all and He has a plan for me. Healing is only a small part of that plan. I can see a glimpse, fragments of a vision and I know with every fiber of my being that I am His vessel and He is going to do mighty works through my family.

I really hope I am not just writing these words for my own benefit but that every post I make helps someone in some small way. I want more than anything in this world to make a difference, to keep at least some people from pain or give them some hope in their current situation. I began writing this journey because I know the faith of my baby boy does not fall on deaf ears. I can't wait to change the title of my posts from counting down the days until I am healed to counting up the days since I have been healed and share all the amazing things God is doing through us. Stick around if you want to be truly amazed!

Day 421

Still can't get rid of this migraine. Thank God I was able to get my IV Phenergan today. Took a migraine pill and still nothing. Hopefully my doc can try something else that actually works. I was told today that insurance would no longer allow the best doc ever to maintain my TPN because they require a gastrointerologist. Bad news is the best gastrointerologist I know of no longer handles TPN. I give up. I am tired of fighting and bucking and scratching and clawing my way to try to get someone, anyone to help me. I truly give it all to God and will do my very best not to let my mouth interfere. Pray for me on that one. 

Last night I had the most aweful memory from when Clint and I were very young and very poor and so in love we made people sick. We are more in love than ever now, we are less poor, and much less young. But though we had a 1 bedroom apartment and an amazing little boy I knew I was pregnant. It was exciting and scary and wonderful and I made a huge mistake. I went to someone I trusted to confirm the pregnancy. The entire time I was there I was being told I couldn't support another child that it was a very bad idea but I knew God would provide for us. The problem was the person I trusted didn't have any faith in me and had the doctor compromise my cervix and tell me I was never pregnant. I didn't know for sure until we were having our baby girl and I saw the tool used to break my water to speed the delivery. I thought I had put this long behind me but it still cuts to the core. I don't believe in abortion but even if I did it would have to be the mothers decision not a meddleing third party. After that memory last night I saw the same thing happen on a tv show today. I can no longer have children because of my severe illness but I have often either in a dream or a vision seen the most beautiful green eyed dark brown curly haired little girl. I think her name was Melody Grace. For a long time I kept thinking she would come into my life somehow but now I think she's been here all along. I can't wait to meet her in heaven. I know this post is way off in left field and I have forgiven the person who thought they had the right to make a life decision for me the same as I have forgiven the person who thought he had to right to put his hands on me long before I met Clint. 

This blog is all about healing. When you think of the lame man lowered into the house Jesus said,"Your sins are forgiven". Then he heals him physically so I guess this is part of my healing process. 

All you ladies out there grieving the loss of a child whether by miscarriage, abortion , or death after a time with them; God can and will heal you. I know you think the pain will never go away and to some extent that's true but it can blossom into something beautiful if you are willing. It might help if you write in the comment section the name of the child that would have been or was as a release , a breakthrough, or even just a goodbye! I'll see you as soon as God's plan for me here is done my sweet Melody Grace!

Day 420 part 2

Positive, yea right, positive pain, positive nausea, positive heartbreak. When the pharmacy who is supposed to know your needs and fill the same thing weekly but can't even get that right because they have to order your meds 2 days after you are out is not cool. My doctor is not equipped to do what the other pharmacy group did for me and this pharmacy says it is all on my doc. I shouldn't have to fight every little thing tooth and nail just to survive. I though Clint taking this new job would resolve a lot of those issues but it has not. I am too weak to fight for myself anymore, hell most of the time I am too weak to get off this stupid couch. I am so over this. 

Day 420

This is another in a stream of seemingly endless rough days. If it's not my nausea controlling me, it's my pain, and if not that my weakness. I don't want this disease to control me. I know God will heal me but until then I don't know what to do.  When I started this blog it was all about hope and faith and it seems when I do devote time to it all I do is fuss so I am going to try to stop looking at the negative in all aspects of life. My sweet husband told me that if I devoted as much time and attention to positive things as I did do negative it would be a world of difference. That is who I used to be trusting, caring, finding the good in every situation. I have been having a very difficult time finding the good when I don't have the strength to put a load of clothes on to wash or stand long enough to wash a few dishes. Sometimes laying here on the couch I don't even have the energy to lift my arms. So what do I have? I have a family who adores me and will sit in here with me to watch movies or shows or just talk. I have a wonderful group of friends who uplift me and so many people that pray for me. I truly am blessed. When God heals me it will be not just for me but for all the world to see His mighty power, grace, and love. There is a reason for this time in our lives and I embrace it with the faith of a child!

Day 419

I am laying here running my IV medication with Elijah set up on the computer doing his spelling lessons. Then we get to read together. I really hope my pain and weakness will subside so I can give him my whole hearted attention. I love having time with him and wish I could make it last forever. Noah left this morning and that was sad. I keep thinking it will get easier but it never does. I already miss my Noah and Krys. Hope is testing this week and if you live in the area I know all of your kids are. I think it's kindof crazy to start testing the day after spring break but that's not my decision to make. 

Even though I shouldn't have to I am going to keep fighting my insurance and fighting to get the care I need. There are specialists in my condition I just can't find them or get them to treat me because their workload is overwhelmed. 

I was thinking about my grandad, Jerry York, today and all the amazing things he did in his life, from fighting in 2 wars to making it his mission to help sick kids and sit up nights praying with strangers over their children. There are so many things he will never be recognized for, but he was so much more than a great, honorable gentleman. He always put others ahead of himself and though he was human and in being so flawed like every one of us, he was truly one of the great ones. I love you and miss you granddaddy! I know while you were here you worried so much about me, but now you can sit and talk with Jesus about His plans for me!

Day 418

Sorry I have not posted in a while I have been too weak to do much of anything but sleep. I have to wait until the 21st to go to the hematologist and have no clue what I am supposed to do until then. There were 2 things we wanted to accomplish this week, get me to a facility that can actually help me with my condition and position ourselves so we can finally remodel our house. Instead we have gotten nowhere on either front except in an even worse situation. Our one tiny bathroom is completely fried. So much our family has had to deal with and the hits just keep coming. Clint planned to do the remodel all by himself, just like he replaced the sewer lines and water lines all by himself with nothing more than a shovel to work with. Just like he remodeled our one tiny bathroom by himself breaking up and hauling out an old very heavy cars iron tub. Just like he tiled and painted the kitchen. Just like he added on a master bedroom and laundry room and closed in for a master bath with not much more than an skill saw a hand saw and a hammer. Mixing concrete in a bucket with a shovel. Hainging and mudding sheet rock all by himself. He was ready and willing to do the remodel with the purchase of some tools and the supplies he needs but because we had to file medical bankruptcy we can't refinance our home to make it livable. Sorry about ranting it's just that Clint does so much for our family and he deserves so much more. He is so amazing and wonderful and sweet and so full of love and compassion. Now what? What are we supposed to do now? I can't even see straight to write anything else or find any more words except please pray whether I deserve this or not I know without a doubt my amazing husband and wonderful kids do not. 

Day 403

I don't qualify for Vanderbilt's center because my version of autonomic dysfunction doesn't fit any of their boxes. It seems like every time I get a glimmer of hope it is quickly snuffed out. My symptoms are gradually getting worse and worse. It is getting difficult to stay positive when every door you turn to is slammed in your face. Yes I have a rare disease but putting me in a box of being a hopeless case is a cowardly way of saying that I am  not worth your time. I will keep fighting until I can find someone who finds my case interesting and wants to get to the root of it before it's too late. 

I really hope and pray that I learn every lesson from this enormous trial and can one day soon use it to help someone who is in my shoes, constantly fighting for insurance to pay for bills that they approved, searching desperately for help and instead getting a universal, "there's nothing I can do for you" health care in America was already broken now it is just impossible. Thank God that in Christ all things are possible! 

Day 395

I have been having so much pain lately and I cannot seem to get any of my symptoms under control. I just found out that now that I have my insurance straight and I can finally go to Maui, that was a mean autocorrect. Of course I can't go to Maui what I typed was Mayo. Anyway now the wait list is so long they have closed it so now I have to find some other option. This is driving me insane. I am going to discuss trying to get into the research section of the autonomic clinic at Vanderbilt. Atleast it is closer and if I can get in on the research side that would be amazing. 

Day 292

Sorry it has been so long since I have written. I have been overwhelmed with nausea pain and all of my other lovely symptoms including massive migraines. The world recently lost an amazing angel of a woman, a very dear friend and important prayer partner. Amy Johnston will be missed by so many people and I can't wait to see her in heaven one day so I can give her the biggest hug ever! Please pray for her husband, Micheal and their 2 boys. 

After seeing the best GI doctor in the area and he reviewed my Mayo Clinic work up I got the same resounding nothing I can do. We just have to keep putting a bandaid on the gushing artery and wait for the need of a multi visceral transplant. We are going to continue to try to get to the neurologist guru on my autonomic dysfunction that caused the gastroparesis in Jacksonville at Mayo there so we can finally get the neurological and genetic testing to get to the bottom and either get a treatment plan for that or a final nothing anyone can do so there will be no doubt when God steps in and places neurons that were never there and heals me completely! 

I am sorry if I don't keep up my blog regularly but lately I have been having trouble keeping up with my life. 

Day 358 - Day 361

I am so tired of this illness controlling my life. I don't know how much more I can take. I know God says He will never give us more than we can bear, but I feel I am quickly getting to that point. The endless nausea, weakness, and pain, unable to do anything about it. Doctors giving me no hope, and losing hope for what they can do for me is very disheartening. I feel like I am stuck watching everything around me just fall apart. I almost don't want to post this to my blog because I just want to be a source of inspiration and I feel like a total failure. At this point I don't want to write anything good, bad, or indifferent, I just want to cry and I am. This is so hard. I don't know if I am strong enough to keep on keeping on. My blood work looks great while my body is falling to pieces.
I stopped writing this and was not going to post it because I have been going on a downward spiral that is not pretty. This is most definitely the ugly side of illness. The mundane day in and day out constant nagging at you. Nobody want to see that. I am just an emotional wreck right now because my meds are not doing much good and I keep getting weaker. I will finally get back to a specialist at the end of this month and it is the only glimmer of hope I have because I feel like I have just been left dangling in the wind. Either I can't sleep or I sleep all the time. My pain is back to a point where it is constant. I just feel so helpless and so lost. I am too weak to get up and take care of the things that have needed to be done for months. I am also afraid if I go to this doctor and he just tells me the same thing that I am going to totally lose it, if I haven't already. I am disconnected from the world, disconnected from my family even though they are right here, especially disconnected from myself. This is not me. I can't even find myself in this shell. i have spent so many years being so hopeful even when every door was slammed in my face even when i was treated less than, I still knew that I was going to get through this. Now I just feel hopeless.

Day 353

I know my post yesterday was not a great way to start off the year but sometimes I get so overwhelmed and I just have to share. I didn't get to sleep until 7am yesterday and slept until about noon and I still have not been to sleep again. I really hope I can wake up in time to call my doctor so I can get in to see him because something's got to give. I know before I have said the closest thing to an equation of what I have is like having the stomach flu 24/7; but when I get a stomach migraine, and yes those are real but I certainly wish they weren't, it is more like having the swine flu and I can make that equation because I have had the swine flu.
Friday my baby boy is going to be 8. It seems like just yesterday he was born. I really want to give him the same attention to detail and amazing birthdays I was able to give my older children when they were young. We may have been on a shoestring budget but I put my heart and soul into those parties. I have always loved having get togethers and putting on huge events. Right now on top of all of my other raging symptoms, I am swollen like a stuffed sausage. We are not planning his party until next weekend but I really hope I am able to do something special on his birthday. We have always gone so big, even over the top on birthdays because Clint and I decided that Christmas should be all about Jesus and yes we do presents and Santa but not without the Christmas Story being read and putting the utmost importance that it is Jesus' birthday. Over the years the kids seem to have more of a birthmonth than a birthday because we celebrate on the day, then there is the party with friends, most of the time we have a separate party for  family because ours is so big and somehow it expanded from a day to a week to a month, but the main reason for that is because it is a time to celebrate their life, the precious gifts God entrusted us with from before they were ever conceived.
I hope you enjoy my blog, I know sometimes it can just be mindless rambling and sometimes I feel like God is speaking right through me. Right now my arms are so weak and my fingers are so swollen that I am going to have to stop for now. I do wish and hope and pray for everyone who reads this, that this new year will be the most blessed, joyful, entertaining, and love filled year you ever could have imagined!

Day 352

I don't know how much more of this I can take. My nausea is like an angry bear and my pain is screaming at me at the top of its lungs. To top off I am too weak to lift my arms and every time I stand I feel like I am going to pass out. My nerves are on edge and I feel like I am about explode. I am so tired of people saying I am faking being sick because I don't look sick. I do a good job around people for a few hours acting like I am not sick and that just makes them believe their little theory is true but that is because they don't see what happens to me most of the time. I never asked for this but alas it is my lot for now and I hope my days aren't as bad as this one until I am well.