On December 31st I had a Vegus Nerve Stimulator installed, It is not on yet I have to heal.
The surgery was not that bad but the incision marks are upsetting to some , the incision on my collar bone feels the worst , where they put the pacemaker thing in.
I have high hopes in this thing but there is something I want to tell everyone because certain things people say bother me , not because they mean anything bad they just don't understand and well I get annoyed with explaining things..........
......Here it goes, the Vegus Nerve thing is for my seizures, my epilepsy.....I have more than that,
I have a nerve demylenating disease, an autoimmune disease.....so before you say anything about me walking when the pacemaker thing is on , I also have more than that going on , please for my sake just don't ......don't say the thing is going to completely fix me.
I hope with all my heart that this is a step in the right direction.
I am needing oxygen at night still because it drops when I sleep, I am a very tired exhausted person.
My simple thoughts are If I should die before I wake I pray the Lord my soul to take and If I live to the morning sun I rejoice that I am still here and the beauty of the day ...even if its fog.
Some of you really are going to hate this post and thats o.k. ........I had someone angered recently a few blog posts back and they came to me with a red face and told me I was overly negative but I believe there is a difference between being negative and just giving the raw facts....being ill it is not sunshine and roses.
There are so many hopes I have and joy in small things , I wonder if this is what angers people so much ? So many people seem to think bigger is better but a big thing for me may be a small thing for them............I really miss being able to drink a glass of water.
Please try to understand me.
Hi Jessica, Mike used to say that the worst truth is better than the best lie. Thanks for giving the truth. People like me want to see you get better, but we don't spend enough time with you to really know the truth of your situation. It is only those who are with you in this trial who really know you, your situation, and what you really need. I thank God that he has provided those people in your life who express their love daily. Your family and friends are a precious gift. And their daily expressions of love toward you are inspiring to me. Thanks for letting people like me know what not to ask. I don't know how these blogs are used, so forgive me if I am not doing this right. Jon
ReplyDeleteNo worries you have used the blog properly, I hope to come back to church when I can.
DeleteOh, I've been thinking of you nearly all the time, Jessica! I send all my good wishes and healing thoughts -- my camaraderie as far as attitudes toward epilepsy and dislike of those who candycoat reality. You are one of the most beautiful and truthful people I've ever encountered, and I wish all the best for you moving forward. May this help to bring a better quality of life for you. Love.
ReplyDeleteI feel a deep connection with you and Sophie and I hope that someday I will be able to meet you both in person.... Thank you for your best wishes and love, I send the same to you.
DeleteI'm so very glad that Katie shared this on her wall, or I wouldn't have known about your blog page. Bravo Jessica! I like what Jon said, that the worst truth is better than the best lie. It is no fun hearing raw truth. Sugarcoating is much easier on the tongue. But if it's false it turns the stomach. I hate, and just won't sugarcoat the truth either. I have a few chronic illnesses as well. I've been trying to think of things to say that are not blunt but truthful, but are NOT "I'm fine" when people ask "how are you?" People may say that that is just a nicety, but even an "i've been better, but I've been worse--how are you?" is better than what i really feel is a lie of "I'm fine" I'm NOT fine. I appreciate you saying it like it is! You have a lot of courage. thank you for sharing what helps and what really does NOT. thanks for letting people in on what a bit of your world is like. You are a blessing Jessica! Angela
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