I wondered what was going on yesterday when I had attempted to go to sleep for an entire day and just couldn’t sleep. I have been working through a medication adjustment for a week now. What this means is we are trying to remove old medication and try new stuff. This includes everything from steroids, pain meds, stomach meds, vitamins, etc. I have had no sleep in a week. I tried everything the doctors suggested, but the reality of the situation is just so complicated I can barely describe it.
First, I am on steroids. Steroids usually naturally occur in your body, but when you start giving them to a person on a regular basis. Like, when I do Chemotherapy and radiation to make the brain swell less. The steroid helps keep the inflammation at bay. However, if you take them too long, your body stops producing the original steroids naturally and you have to play a catch-up game. Hopefully body will naturally produce the original steroid at the original level. This drug and weening process makes me super tired, super hungry, super anxiety riddled and just basically a giant chipmunk face. I will be happy to see it go, but grateful it exists or I could be brain dead.
Then I have the added bonus of weening of off two more drugs plus I am doing Chemo, and Radiation, all at the same time.
I woke up last night dilerious and in seven forms of pain, completely crazy. I couldn’t get the pain to stop anywhere and I didn’t know which end was up to even try. I was angry and so scared at the same time. I couldn’t completely pull together what was actually going on. I yell for my husband at two in the morning . He is groggy and cranky because he is not sleeping himself. Or eating well or doing just about anything for himself. This is what we call the ideal storm.
Ken is panicked because of all the ailments. He has no book on this. I am in pain and spouting swears out because I can’t even think of what I can do to make this better and I am working off of no sleep. He is in a panic and cranky I am delusional and angry and we are both doing nothing useful to get anything done. In the meantime my daughter walks in from her night and says what’s going on?
I tell her the story and she says to Ken , “mom is tired . She is not usually this sensitive and you can see she is not herself. I think we should put her to bed as comfortable as we can and play her some of her books or meditations. If it gets worse we call ER.” Then she says I love you Mom I know you don’t mean to be mad and angry. So, Ken does just that. I was still in pain. I was still angry and I was still uncomfortable but it was the compassion and the love that made the difference. I slept a tiny bit.
Emily has been able to benefit from self care and love lately because she has done things for herself. She minimized her school load a bit. Which took some of the pressure off. She went to her boyfriends grad and had a good time. All very good things for her.
Ken has been doing a lot of everything all by himself because he is often afraid to ask for help. A personal flaw we all tend to have but a flaw that really shows up when you need to have something to give and you have nothing left. This is all new to him as it is to me. He needs help too. However, he, like so many of us, have been wrongly taught, that help means something other than what it really means, which is simply. I am human. I can’t do this world alone.
So I am asking for help for my husband and myself as well because today I woke up another glorious day and all I have is now. Might as well use all the Now’s we have. My ask is this:
- Please leave some of your advice or tricks to help keep medication on schedule, or organized. We tend to have a crisis mode here all the time over grocery planning, med planning, cleaning schedule etc. With options we may be able to find the right plan that works for us.
- Please donate or help us find the people we need to talk too. To help make this Funding plan better. Money is an obvious big worry right now with Ken not working and us trying to find a phenomenally costing cure. We have flaws in our system. If you see them tell us and offer up suggestions.
- Any ideas as to how to take your mind off of the illness, support groups possibly for men who have to go through becoming a home nurses. That might be helpful.
- Ideas on how to sleep more soundly when you always seem to be on call.
- How do you make meals easier when one person cannot eat the same foods as everyone else? Are there places to go to help the family get involved in the meals and meals planning so that we don’t have to go to the store’s a billion times because things have been forgotten.
- Honestly, anything may help. You just never know when a thought comes into your head. I am open to all ideas. This doesn’t mean I will be able to do them all, but you may have the great idea I have never even thought of.
On the backs of one of the t-shirts the kids made it says we can’t do this world alone. That is the truth. We are communities for a reason. We were meant to be together working as a team. That is why we are all unique and perfect . Everyone has a new perspective.
Thanks for listening to my babbling on today after once again very little sleep. I hope a weekend of rest means for more learning and profound thoughts next week.Thanks for being a part of my story.
Oh ya and prayer or positive thoughts have always been one you all have helped me with and worked so well. So Thanks for listening. Thanks and God Bless 🙏