Monday, December 8, 2014

Learn to Love Tubes. Learn to Live...If I survive the Holidays!

             Since I am finding out my Gastroparesis is unlikely to go away. As well as living in tons of pain every time I eat.... And all the vomiting and nausea. I am feeling super bummed out. The holidays have been making this even heavier as they progress. I am the cook and they baker. I have always had such a love for it. Though, I do not cook or bake often due to my prolonged list of ailments courtesy of Dysautonomia and a few other things. I normally can scrounge up some energy for the Holidays to make a few things. And of course when you get stripped of a lot of the "normalcies" of life when you become chronically ill (having extra money, being able to go places, like shopping...) things go out the window before you get a chance. The next thing you know you are dealing with the reality of 'where did that go'. I did however successfully help make Thanksgiving dinner. That was when I got out of the hospital, of course. I know everyone has trials and hard times in life. I believe no one gets out spot free. As my hunger progresses daily... My patience shortens. I dislike it. A lot! I want food in general and especially the yummy holiday goodies. I just want to sit down in a restaurant. (something I not long ago took for granted) I can eat but barely and I typically get very ill when I do. Due to this I feel like I must be at home to eat. And TPN (total parenteral nutrition) The way I am eating now... I have a picc line a.k.a. a central line and am fed through that line. yummy! It totally bypasses the whole stomach. It goes through the kidneys (and the blood & all  that good stuff, I am not a scientist to explain that part haha) Bottom line. I am starving! Don't panic though I am getting all my nutrients and any life sustaining needs via my picc line. It looks like I will be receiving a Jejunostomy/gastronomy tube in the nearer future to sustain me.(TPN is temporary, and it rough on my little body)  That's where they put a tube in your stomach (well in this case 2 tubes one in the stomach. One in the Jejunum.) I have been a bit afraid of dying. Reading scary stories on the internet don't help. But today God let me have peace and know I am not dying right now. So I will fight. I will fight and I will learn to love my tubes! As well as that HEAVY BACKPACK!! Without them I'd be in bad shape if even alive to write this right now. When I realize that it makes me realize I have a purpose here and work to do! I have excitement in that and pride! I am so thankful for my faith, that I can have the wonderful mercies of God and my Savior Jesus Christ. I am blessed! Times are tough and seem confusing. I have physical disabilities but I have God and Jesus Christ... And all my angels here on earth (my family & wonderful friend that has gastroparesis and POTS)  and in heaven and if that is not enough. I simply do not know what ever could be! Hmm puts the Christmas Season a little more in perspective! I never wrote my Thanksgiving Thanks really... I am Thankful for life, My family & loved ones, God, & my savior Jesus Christ! And of course my tube!! The basic necessities in my life are my number ones! xo- Chelle