I am changed. I know this and I have been told this several times. I am not even close to the same person that I was in May 2016. I got sick and everything changed. The cool thing about this disease is that most days I don’t look sick! It makes people think that I am somehow healed or that I will “feel better” soon, or that I am faking! Lol!!! I am good with all of that. I have a friend who is having a rather sizable surgery tomorrow morning and it made me think about a lot of things that have happened leading up to my surgery and after!

I remember getting ready to leave for Cleveland in February 2017. My surgery was scheduled for Valentine’s Day and it would take anywhere from 8-10 hours, so I busied myself with cleaning up loose ends. If I didn’t come home, I didn’t want the mess for Mike and the kids to sort through, so I did my best to put it all in order. I am not sure now how much order there actually is to it, but I was busy! I had resigned myself to the idea that if I woke up to see Mike that I was OK. If I woke to see maybe my Dad’s face I was good too! Outwardly I tried to show that I was alright with each option, yet there is the option that no one talked about, the “What if I go in like this, and I come out….not like this?” option. I only mentioned that option a couple of times before I couldn’t talk about it. The reality is that I very easily could have had a stroke, been left unable to talk, feed myself, or even move. I knew that if that was going to be the outcome I wanted no part of it. In passing my friend said the same thing….what if? I am going to trust in the sheer hope that option is nothing she needs to worry about.

I still wonder where I go in my mind. I know that sounds ridiculous, but seriously, where do I store those thoughts that I can’t think about? Somehow with my friends surgery, they have all surfaced again. I think about the unknown, the plan, the execution of the plan, then I think of the things that no one can plan….. You can not plan for the things that might go wrong I suppose. That is faith. Google defines “Faith” as….

faith/fāTH/nounnoun: faith

1. 1.complete trust or confidence in someone or something.”this restores one’s faith in politicians”synonyms:trust, belief, confidence, conviction; Moreantonyms:mistrust
2. 2.strong belief in God or in the doctrines of a religion, based on spiritual apprehension rather than proof.synonyms:religion, church, sect, denomination, (religious) persuasion, (religious) belief, ideology, creed, teaching, doctrine”she gave her life for her faith”
   • a system of religious belief.plural noun: faiths“the Christian faith”
   • a strongly held belief or theory.”the faith that life will expand until it fills the universe”

(I would like to make that deal smaller, but I can’t!! I am not up to this new Editor yet!! Lol) I put faith in the Doctors, staff, professionals, but mostly I put it in #2. This is the only way that I could face the days that were to come and the days that are here now. While thankful for each day, I am somewhat vexed by the idea that much of me is still confused as to why I am still here. I am frustrated often by the idea that this is as good as it gets, and here goes the pity party!! Don’t join me as you are not invited to this party. I am selfish and I like to roll around in my medicine bottles and painful body parts and all of the things I can’t control!! Though this is an invisible disease, it plays with my head, my heart and my emotions every single day. I am on constant warrior patrol. My guard is continually up and I have to prepare days in advance for one big outing or event. I bank my energy if there is any extra and I plan literally hours at a time. Nothing beyond a few days most generally, then when I do I am terrified that I won’t have it in me to follow through. Enough already!!!

We are all terminal. Not one of us is getting out of here alive, so I believe that I will continue as I have up to this point. My Faith sustains me when nothing else makes sense and I have this almost 2 foot scar going down my front. It reminds me of all of the things I can not control and how I rode home from Cleveland feeling every single bump or crack in the road. It reminds me that this body has done alright for 51 years and required a rather large overhaul almost 2 years ago. Like most things I remember, it feels like yesterday. My memory isn’t that great!

If you have suggestions about getting through life with any disease that won’t ever heal and will eventually run out the clock, let me know! I would love to hear from you. If you need to borrow my Pity Party decorations, I will loan them too!

Until then…saying a prayer for M. Double down Sister.

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