Saturday, March 19, 2016

My miracles from heaven re-view

Before we left, me and my momma took a before lol
On the way there on the car...
In the theater with my tubie feeds
I cried... A lot. They represented paralysis of the gi tract  & pseudo obstruction very well. They get a big thumbs up! I cried for myself I cried for the other sufferers of gi tract paralysis. I cried because a lot of it hit home to me. Being in the ER all the time getting told it was nothing. Getting wrong diagnosises and being told to be happy it could be much worse , knowing in my heart that was not what is wrong. Worrying about dying. Feeling so sick that you think , "all right this is it." Then it turns to "please just let me go home." (Because the pain becomes too much and heaven obviously would be the better alternative we think at the time.) It's good to know what's wrong but it quickly turns to turmoil and help is scarce to find. What do you do when doctors can't help it simply won't even be bothers to try. I saw and called over thirty gastroenterologist in our state and got told by all but three.... Yes, three!! That they wouldn't even try or consider treating gastroparesis. When I asked,"why" I would be told repeatedly, "there is no cure. It's too complicated so we choose not to treat it." To me that still makes me mad. Even if I did not have it I would be mad. I eventually found help. A lot of Fight. Fight. More fight.... Day by day is where you take it. Then learn minute by minute (at least for me).... Oddly, One thing I found funny was the doctor (her motility specialist at the Boston hospy) was just like my gi dr Pitea ... Just tone down the craziness of kids and add a dose of serious for adults. (He is pretty funny though) so that oddly was something I related to that I definetley was not expecting. We are always joking in the endoscopy lab! I also have typically the coolest nurse that plays music on his computer and is super calm yet hilarious. And he always is the best about my million warm blankets because I have to come out of anesthesia slowly so my POTs doesn't get too mad. And I have struggles with body temperature regulation... I actually am like super cold and I shiver for like hours of they don't listen to me and help warm me up. (Majority of post op nurses think I am dramatic because everyone is typically cold coming out of anesthesia it's cold in those rooms) but mine is dysautonomic dysfunction. I love  feeling taken care of and the lightness of the conversation they give....that is the best way to be before being put under anesthesia not the whole dry serious bit. I worry a lot less that way!                                      One topic that stuck out to me was feeling alone and letting our faith take a vacation. I personal think the grief has a lot to do with it but that frustration comes and it comes in waves. I have questioned, cried,and angrily yelled at God for not healing me. I just didn't understand what I did. Why my? My answer was always,"you are special you have a purpose (as we all do) you have work to do." I would consistently reply, "but I don't want to be this way. I want to be Normal." Then one day a bolder answer came to me:(after the billionth I don't want to) "you chose this body this life. You knew what you were getting into in the pre existing"and I knew how totally right and true that was. I was willing begging to come. Part of me thinks maybe I was a little bit over my head and I didn't think it through. I mean obviously. But then I realized why not me??? Why bot be this way?? But the blessings I receive In  this life out weigh all the bad times. They simply just do. Some days are long and lonely. Sometimes though you battle the war with your family and friends by your side. Yet you still feel so alone. No one gets it or understands what it is like. Well my friends that's not true. It comes out of my mouth a lot but I know it's just frustrations building. Heavenly Father never lets us be alone. His grace, peace, patience, And never ending love are ALWAYS there. He KNOWS what we are feeling. He is there I promise you that we are never truly alone in this life. Though bad times come with trials and we may seem alone if we cling to the knowledge that our loving savior has been through everything and died for us. If we cling to heaven and keep eternal perspective... We will win the ultimate battle of life. He is the gift of never being alone. He lives for me. The least I can do is let him in my heart and remember even in the deep trenches of turmoil he hears me, he is there. I (we) are NEVER alone. Fight for patience (and I will work on that too because we all know that muscle in me needs a lot of excersice)-Chelle   (I may have overdone it today I just want to wash my makeup off but laying here too dizzy with tachycardia. I need salt) I feel this compliments this post well. Watch: