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Husband = NOT Caregiver

September 5, 2022 19th Wedding Anniversary = Beyond blessed

First off I cannot thank everyone enough that reached out in various ways to wish Brent and I a Happy Anniversary. As I said in my last blog due to Mother Nature our original plans were cancelled, and to be honest #MyGlitches were not doing well either. On top of that I am pretty sure Brent knew my mental state as well was still focused on us just starting the empty nester phase of our lives together, and I needed to be closer to home. (Of course he was right...and out did himself with a few surprises for me)

A surprise night out on our official 19th Anniversary in a Private booth decorated at the Melting Pot. If you have never been which we had not, highly recommend it! The food and service was amazing! I was very surprised because I was so used to being at the boys sporting or HS events and or at he knew I needed something extra special.

Prior to our actual night above...we began rearranging the house a bit, going through items that we could begin to sell, and he focused on the "new workout/blogging room". This way he and I could help ourselves focus on our personal goals, and as I said before begin our empty nester phase chapter. the room turned out perfect, and energized us both:) I am happy to report we are back working out, and I am just now starting the weekly blogging goal.

My new official Blogging spot all set up with my reminder hanging above

Now I must say the competitive spirit in me, has had a hard time of not wanting to go full speed ahead on the workout side of things, and at times ends up causing more harm then good to my physical state and mental state leading to more #MyGlitches that day/evening. Placing me in pain, on the floor or in the bed. Brent had to sit me down and be stern with me, or else he knows I would push myself too much and then causing him to not reach his goals, because he would back off how fast he was moving and he would feel guilt.:(

I need to mentally learn, as he says I tell others with #MyGlitches "it is ok to not be ok" sometimes and my goals need to be reaching for myself daily, and not against anyone else but myself feeling better. Giving myself the confidence and advice which I do well for others......but not me. Be PROUD I got a workout in, even if it wasn't as hard as I used to be able to go prior to #MyGlitches, or I had to modify or not even finish what I started. I needed to be glad I was able to get through any workout step by step without a #MyGlitch happening during it, and make small steps each day to get better.

Now getting to the title of this BLOG. I have to attend FaceTime meetings with others in an Epilepsy of FL group with a case worker based on my disability, about every 2 weeks. At times I enjoy it to learn from fellow parents of various age children whom have their own #Glitches and also other adults who have #MyGlitches. But other times it places me in a mental state where I need not to be based on what our family has developed over the years of #MyGlitches getting worse in place of better. The one word that is used over and over again by this group, the Epilepsy Foundation as well in articles, at doctor offices etc,. is the term "Caregiver". Even on forms I fill out, it will ask for whom is my "caregiver". I myself will get Brent upset when I say thank you for him/sons taking care of me or apologize for messing up plans when it is a very rough #MyGlitch day.

He will say over and over again we are a family, we love each other. We do what families do when they are full of LOVE, just like I am your husband and you are my wife we took PLEASE STOP saying CAREGIVERS because we are NOT. We just LOVE one another and would do anything at anytime no matter what it might be, because we are family/husband/wife/dad/mom etc. We are NOT your doctor, nurse....those are your caregivers.

So I brought this up to my caseworker and asked if there was another term the Epilepsy Foundation, dr offices, schools etc. could begin to utilize in place of "caregiver". She acted very puzzled and didn't understand the conflict because in her eyes, my husband/sons/parents "take care of me" when I have #MyGlitches, hence my #caregivers".

So my question to all of my followers, what are your thoughts and ideas of the word #Caregiver? I would LOVE to hear any ideas that I could suggest to the Epilepsy Foundation, as I do believe my husband has a point and I believe there are probably other families out there feeling the same.


Words we live by since the day we said "I do to death to us part"

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08 set 2022

This is such an interesting (and true!) perspective. I know when I am overwhelmed in a crowd (as tends to happen due to anxiety and other long-standing issues) John’s presence is how I ground myself. I think of him as my anchor. But that maybe doesn’t sound quite right but I know it kind of captures what you need when you hit a glitchy patch. You need an anchor to get you through it. I’ll keep brainstorming and see if any better words come to me. Love you💜 Melting Pot date night looked amazing!!

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09 set 2022
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Well-being guardian? 🤔

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