Cowden Syndrome and Me

Have you ever had one of those days that you just dont want to get out of bed.

Thats me every day, but with a bit of a switch. Its not without the lack of trying, its the fact that if I dont get out of bed I will start hurting. I wish I could just turn it off. Go back to the way it was, of course without the cancer. I cant so I push through the day.

So my day is different everyday. There are many factors in my day just to start off. One, how did I sleep?. Two, the weather. Three, did husband come in like a bull in the china shop and got my service dog wanting to play? Four, do I have any appointments for the day? Five, am I foggy? Six where is my temper? Seven, am I in pain, if so where? Eight, are the boys having a bad day ? Nine, are the dogs being a pain? Ten, did I put off anything from yesterday to today? This is just while I am sitting on the edge of my bed waiting for the dizzy to pass so I can stand. Once I stand well then its to the medical questions. You know the covid ones.

You might ask why not just drink a thing of coffee. I cant anything that causes my heart rate to go up then I run the risk of falling and dizzy its not pretty. Trust me I would love some coffee or starbucks but I cant. I also just dont like the jitters.

Lets go through the ”sleep” depending on if I have an appointment the next day I will take my traz or not. If I do I wont take it if I dont I will. I also take praz for night terrors. I have to becareful if I have to get up in the middle of the night because the praz can drop my heartrate down to a dangerous level. I charge my watch before I go to bed so it can monitor my heart rate and alert my service dog in training and wake me up. Even with those meds there are times I cant sleep or when I do the nightmares are horrible.

Weather? I live in Texas. Land of wait a minute, hold my beer its going to change in a blik of an eye. One day it can be 80 degrees and the next 32. I swear with the gods made Texas they made it by polar. With that said in my bedroom I love it cold, that way I have a lot of blankets to snuggle up with and I feel safe. My Service dog she loves to get under the blankets too. I also have to plan according if I have an appointment the next day or not because of the distance I have to go. So I have to double check and tripple check.

My husband works overnights. If he had a bad night or something happen my dog will also pick up on that and try to cheer him up. By the way my service dog in training is 90 pounds at 8 months Great Dane who has not finished growing. She loves him a lot, and hates to see him upset.

Appointments for the day. This could also go with the weather. I hate driving in rain, or ice. Here lately I have tried to get all my appointments that are on the same day some what spaced apart so I am not having to rush. I go through all of them and I make sure through the app that they have not been canceled.

I know this should be first and there are some days I do this first. I check if I am foggy. What I mean by this, can I think clear? Am I having trouble focusing? How long is it for me to get clear or to focus? With all the meds I take being foggy is a concern. I will not drive if I cant clear my head.

So temper. Sometimes you can just wake up mad. We all have done it so, I have to check that even before I stand up. Again that goes to my heartrate.

Am I in pain? That is a very good question. I would have to say yes. All the time. Pain is not just physical its also mental, and emotional. I have to go through all of those even before I stand up and again when I do stand up. I have to see what hurts can I get it to go away with stretches? Bends? Heat packs? Ice Packs? Pain killers are last resort. If its mental or emotional, I write it down and work on it later.

If I have a later appointment of course I am going to leave later this is where the boys having a bad day or not. Both my son and my husband work. Well there is a lot of grumpiness and the fact that they still have to watch my service dog , she is not trained in a medical setting. I have matched there energy a lot here lately and well going to deal with doctors thats not a good idea.

Like I said before, the boys work and sometimes they work over night. So when I wake up for the day, I take my service dog out to the living room. Where the other of my dogs are at. I have three very old lab mix girls, and well my service dog thinks its play time again she is a Great Dane and towers over them. She wants to play and well the others dont want to and I have to get them to calm down so I can get the day off and running.

There are days I have no energy. If I am able to get anything done well thats a good thing. It is always a good thing to know your limits. I have put things off to do the next day. So this would be it. I would get things done that was supposed to be the day prior but i also know when to take it easy.

All of this what I have to go through, just to get out of bed. I will be adding a few more things to the moring check list coming in March. By any chance there is SOMETHING else wrong with me as well, I will be adding that too.