I am done with all the meds

What a crazy road I seem to have been on. My meds had increased, and they finally this last month had tried Fentynal patches which in 1 month left me physically toxic. Yes, sicker physically without really ever knowing that these 3 day at a time patches were actually poisoning/overdosing me (They just were recalled http://www.fda.gov/oc/po/firmrecalls/pricara02_08.html ) Finally the first time I was in the least amount of pain I have been in years, but at what expense. Well let me tell you, at the expense of not being able to really be there like I would like to for my children and husband, as they were slowly poisoning me. After a month I could no longer take it and stopped all my medications against the recommendation of my physicians, as I have been suggesting for months. They insisted that if this route was what I was ever to take that I go into the hospital and have a pic line placed into my heart due to the strain this could take on my body, but still recommended against stopping all the meds, but I am tired, and I wonder now how much real good all of these meds are really doing or at the expense of loosing any precious time with my family. I have learned that it is better to be in in pain and to have quality time with my family than to not remember not having any time with my family. This my doctors do understand, so now we all search for alternatives to my suffering, and to find hope. In this whole process, I am thankful for my family, my friends, and my church and for the Lord who stands by me even though at times I am feeling so alone. Truly I am Blessed, even with these illnesses.

Can this illness drive you to do crazy things?

First of all let me apologize for any typos, or spelling errors as my spell checker for some reason isn't working and it doesn't help that the docs have me on so much pain meds right now that my function level , well lets just say it is poor but I am trying and it takes me many trys. Over time I have come to find that this chronic illness that lives inside of me has another name...... I now call it "Satan." It acts, deceives, hurts, corrupts,consumes, destroys, takes over ones life, and those around it or who loves others in so many ways. You can call it Chiari, Pseudo Tumor Cerebrie, or any other Chronic illness which leaves you in so much pain, but the bottom line is......its name is Satan, and if allowed in at will destroy and consume you and those you love. I am fighting this Satan now as unfortunately I think now that I have let this "Evil" in and I and my family are being consumed. I thank God every night that he has answered my prayers and not allowed me to give in and kept me strong, although I feel so very weak yet something within me has has kept me fighting this urge where one voice is telling me that I can't keep doing this and allowing this to destroy my family and is allowing them to be hurt and then another voice wants peace for my family and myself and knows that I could in a blink of an eye end all of thins pain for them and myself , yet I know this voice is Satan , and then the other part of me is fighting knowing that they would never want any of this
nor do I. Then their is the calm voice within I hear that that I know is peaceful with encouraging words which is why I remain here to fight for my family and myself and my miracle. My youngest one Max came to sit by me today and asked me why it is that it hurts me so much to cuddle with him anymore cause he misses it. He says he is sad he I am sick and it makes his cry to think that I am sick, I was so hurt by this question. All I could say to him as I tried to hold back my tears as I watch his tears swell up in his eyes, was I too miss cuddling with him to, so very very much but this illness that I have makes it hurt alot for my skin to even touch my clothes, my blankets and things like that, and its not that I don't want to cuddle with him cause more than anything in the world I would love to. But of course this is still just hard for him to understand so I asked him to find his favorite stuffed animal that I had gotten for him and he could cuddle with that a squeeze it as tightly as he wants and my love is always stored in it for him and although I may not be able to sit and cuddle alot like he wants, but I will try as much as possible to endure his hugs so I leaned over to give him a hug (pain and all) but he had a hard time letting go. This is why one of the reasons this illness keeps me fighting and on that fine line of the edge off being driven to do crazy things. One minute I know what I am fighting for and the next that maybe what I need to be fighting against .

Satan comes in many forms in our lives, and each day he enters my life and tests me regarding these chronic illnesses and through the boundaries of my weakest links......my loved ones and how this effects me. When I see my childrens and families sadness and tears and that there is no help to my pain and theirs except to end mine, I realize then, Satan wins! This is when I turn to God and continued to ask for his strength, I ask my dear Christian friends to to put me in their prayers asking for further strength, but I still realize that Satan awaits daily silently knocking on my door still trying to succeed by gaining further entry into my life, putting up further road blocks, and by closing my door on me succeeding on my own dreams of finding a cure for these chronic illnesses, that are consuming me and my family. I haven't seen my parents in several years nor my 94 year. old grandmother who I miss so dearly and is not doing well herself. am so homesick and isolated right now which doesn't help with my depression. But until the time comes I will continue to take my long walks on those white sandy beaches and will invite at times my children to also run on the reach while the water and sand runs between their toes, I will sit calmly on the beach as I feel the oceans air blow through my hair only to feel the calming peace run through my body and the warmth overcome me, I will watch my husband building sandcastles with with Kaytlynn and Max while they laugh and play in delight, I will watch Kyler and Kendrick run down the white beaches full of seashells flying there bright and colorful kites smiling and full of enjoyment with I have not seen in so long, and I will finally feel those tiny little arms or Max's hugging me and cuddling me so tightly without pain, while looking up to God knowing God was looking down at me and finally gave me my miracle.