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.
This is my journey to healing from a rare and ugly disease. I hope to be an advocate for all rare diseases that are often misdiagnosed or worse left to think it is not real.
My Reason
My sweet Elijah has used every wish, every prayer, every day to ask for my complete healing. I knew in 2008 because God told me when I first started getting really sick that things were going to get much worse but He would heal me only when His timing is right and He receives the glory for my healing. For those of you that do not know, I have Idiopathic Gastroparesis caused by a genetic condition known as Autonomic Dysfunction. I am currently on IV nutrition through a central line and on several medications. I had a gastric pacer implanted in 2010 to alleviate some of my symptoms and it worked well for 6 months but my nerves quit responding and I finally had it removed this January. In other words it did get much worse. I start this blog now because I know God will not let my baby's faith die.
Friday, January 10, 2014
Thursday, January 2, 2014
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!
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!
Wednesday, January 1, 2014
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.
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