I am sitting here on a Friday evening, thinking a little about my life. I just had a nice evening with my mom, watching HBO, and then coming home and watching my daughter's friend, showing his zumba moves. It was fun. But what I am really thinking about right now is how to get through the night with the least amount of pain as possible.
I am very aware that lately I have been complaining more about my physical "issues". I really have not wanted this to become a pity party blog, centered on my physical fallout from cancer. But I am also finding out that things are not just resolving the way I had hoped a year ago or even 3 months ago. I am finding that although controlling my diet does sometimes make situations more predictable, it does not make life any where close to "normal". Absolutely..............every morsel I eat is thought out depending on what I have planned up ahead 24 hours. And I am finding what works one day, does not work the next. I guess, that is the reason I am considered "disabled". Even though I am the one who requested to be considered for disabled status, somewhere in the back of my mind, I guess pride or stubborness, I think, maybe I am going to be better next week, next month, or next season. Then, I can get a job. Work with the special needs kids I love so much, or even work as a clerk somewhere. Frankly, I don't care where. I would love to even work at McDonald's if I could bring home a pay check.
But what I am finding is a life of living 4 hours at a time. What I mean by that is I can usually predict if I will be "OK" for 3 or 4 hour ahead of time. Not always. Sometimes, in the morning, I will think I can go out and be functional without the risk of accidents and pain. Most of the time I am right. Sometimes, I guess wrong. When I am wrong, if I am at my mom's or sister's it is a little embarrassing but not a big deal. When I guess wrong and I am in the public, it is horrifying. I can't even describe the embarrassment.
This brings me to the things that make my life somewhat tolerable. In my day, I have pantie times, and diaper times. Most of my day I wear a diaper. I know. I think Oprah said there was nothing worse than wearing a diaper. Just the other night I saw on a show someone saying when they have to wear a diaper...........just shoot them. Oh how funny:( Well although I like Oprah somewhat, and I know this other person was a naive idiot, it still hurts hearing that to some, nothing is more humiliating than having to wear a diaper. People wear diapers. 48 year old women wear diapers.......I wear a diaper. Get over it. I think myself lucky if I go half the day with big girl panties. That is my reality. And then there is my ointments.
Because it is so much a part of my daily life, I have not thought a lot about the ointments that get me through my day. It is just a part of me that I don't put much thought into. But, when helping someone else deal with their own "issues", I went through the process of what I go through every day to keep my bottom region healthy. How absurd or inconceivable it must be to most people that ointments would be so important to a person. Awhile ago, a friend of LL, who lost his colon years ago told LL that his best friend was his ointment that kept his bum healthy. Well I can now tell you he was not kidding. I have one medicine that helps me numb things when things are in process, I have another that keeps things healing when things are "normal", and then I have one that helps me when I have have open sores.
Why am I telling you all this. It is a process. I have talked to you all about my surgeries. My chemo, radiation, diet, etc. But in reality, what affects me the most is the day to day pain of the fall out. Yes wearing diapers is embarrassing sometimes. Accidents are always embarrassing. My diet is a struggle and mystery I am not ever sure I will figure out, but it is my actual physical pain in my "bum" that is the most debilitating "issue" I deal with. When I am walking around the house, dealing with it, my daughter calls it the "howdy partner" time. Visualise it. You will understand. So I guess for those in my blog world, give me prayers or good thoughts, and for those in my real life, understand when I don't attend things or say I am not feeling well,......You will know more what I am talking about. So for tonight. Howdy Partner, and Giddy up. yes I am walking that way:)
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