Recently I have been diagnosed with Epilepsy, when I say recently, I mean 3 years ago. Let me just put this out there, I am a terrible patient and I am even worse at reacting to knowing I have been diagnosed with a lifelong disease. Somedays I wish I would have been born with this so I would never know what I didn't have.
I am super independent at almost a hyper-independance level. I hate asking for help, I have trust issues, and I would rather just do things for myself so I am not disappointed. I know this is a bad thing when you have Epilepsy. I am still working on this and I get the sweats just thinking of asking for help from others, especially those outside of my 4 walls.
When you are diagnosed you learn who your real friends are and who are just talkers. Everyone knows a talker, you know those people who always reply to everything with, “If you need anything let me know.” This of course is absolute crap because when you call them on it the backpedaling starts. I lost a friend of 35 years because of this. It was a heartbreaking thing for me to realize she was just there for me in words and not actions. I guess it proves that some people are only there for seasons of your life.
Since getting diagnosed, I have lost my career, my independence, pride, and some friends. I also get aggravated at all the questions like, “Why is this happening?” “When will it stop?” I have Epilepsy! It is for the rest of my life!
People also do not know what all Epilepsy entails. It is not just convulsions. It is depression, mood swings, headaches, anxiety, body aches after the seizure, humiliation, I could go on and on. My mother once needing attention told me she thinks she has Epilepsy too because her leg twitches when she was sleeping and that I must have gotten it from her. This was just insulting! Nobody should WANT this.
I have been having breakthrough seizures about every other month on medication. I have not driven for almost a year, begging for rides is almost too much for me to bear. I hate being a burden. We live in a very rural area, there is no bus line, no walking to town, and all those ride share apps are out of the question due to cost. My daughter still lives here for now and she has been a gift, I know sometimes she does get tired of Driving Ms. Daisy.
My seizures since they do not happen in the right “order” does not qualify me for disability. I guess I will have to plan my seizures better, instead of every other month, the breakthroughs need to be 3 in a row. What the crap! I filed instead on Epilepsy and EVERY side effect of the disease and medications. By the time I get denied or approved The Cleveland Clinic may have it controlled and I may have my license back. I need this money now, I paid into it for 30+ years, when I need it, it is not available.
This brings depression. No money, no independence, Great! Lets not forget the medical bills. We apply for programs and they want our tax information. The years they wanted I was working so we can’t qualify. We have no money now, not when I was working! I spent 6 days in the hospital for an EEG, I have not received that bill yet, can’t wait. But last week I got a bill for $187 and it sent me over the edge! I was ugly crying, raging to God, saying I would be better dead due to the financial and personal burden I have become.
I have always said God gave me Epilepsy for a purpose, whether it be advocacy, writing, who knows. But there is a plan I just have to listen. But this day I just broke. My husband of course came in while I was shouting and comforted me the best he could and informed me he NEVER wants to hear those words again,
To calm myself I went out to my ducks. I have 9 ducks that my kids brought home one day. They thought it is better to apologise than ask for permission. These ducks and I have a love/hate relationship. They are mudpuppies and their area is decimated. We just had rain for what seems like a month and you just sink when you go into their pen.
I did not care, I needed duck love so I put on my husband's muck boots and headed out to my quackers. As usual they come running up to making all the quacking racket they can. I notice their water bowl is full of mud water because like I said they are mudpuppies. So I slip and slide to get the bowl to rinse it out and give them fresh water that will stay clean for 35 seconds.
That's when it happened. I sank in the mud with the water bowl in hand and in desperation to free myself I tripped over the chicken wire and fell facedown in the mud. The muddy water splashing all over my face just for extra flare. God has a sense of humor. I just busted out laughing at this point even though I was just having a crying fit 10 minutes before. My husband came rushing out of the house not knowing what to do, “Are you crying or laughing,” he asked.
All I could declare is “God has a sense of humor!” You see all these things that we go through are all just mud. It washes off and we are clean and can start again. God got my attention that day and reminded me that I will get through the mud that I am stomping through and that gets thrown at me. Everyday may not be easy, but when you get mud on you God will be there to help wash it away. That and a good hot shower…..stupid ducks.