Day 21 of 2017

Today where we live in Missouri the sun was shinning and the temps got into the 70’s. Today Laurie was able to come with me to the pharmacy and Walmart for some groceries. She did really well so that was a definite positive. I had to take her into the men’s restroom though because the family/handicap restroom was out of order. She can not walk into a restroom on her own – she is in a wheelchair when we are out and about, walker at home. We laughed today so that always makes for a good day. We even did a little bit of cuddling on the couch while watching tv. She managed to do a little cross stitch so that was a positive all her own today. We got to have the windows open all day – love it when we can air the place out.

A quick selfie before heading into the house.

On the not so positive side the weakness on her right side is worse today. I also noticed that her speech is worse too, no headaches though. I know that she probably needs to go up on her steroids a lot more then she has, but it is her body and her decision. I feel like I am in a catch 22 situation because I take a sleep med that knocks me out for 4 hours and if I don’t take it I get really worn out quickly (my sleep is only 74% efficient with the sleep med and a lot worse without it). I am worried she is going to have another grand mal during the night and I will sleep through it. I am just worried about the swelling causing another midline shift. So the catch 22 is that if I don’t take my meds it will make me worthless and if I do take the meds I may sleep through something happening to her. It just sucks all around.

My wife and I have a wild sense of humor. We love to laugh and love making each other laugh. So today we were in the bathroom and she was looking towards the toilet. I asked her what was wrong or what she was looking at (can’t remember which) and she said she was looking at the light (window above the toilet), my response was – no, not now :). She got it and we both had a good laugh. We both try and find the humor in all of this when we can. We talk about her writing her own obituary (something she wants to do and to make it funny) and we have talked about her doing her own eulogy via a recording of her. We discuss her celebration of life (she does not want a funeral). We know how this will eventually end and we don’t hide from it, what’s the point. So sometimes we make jokes and other times we cry. Please know that we do not make light of anyone else’s struggle with this terrible, life stealing disease. We just choose to look at our struggle with humor sometimes.

Thank you for taking a sunshine filled walk with me today. Rain tomorrow.


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