Actual thoughts I have had today and did not say aloud. Well, most of them at least.
Acting is the only business where you can say “I have places to go and people to be!” and it not be just you misspeaking.
I should drink more water!
I have an advertisement on the back of my car for the show I am currently directing. Today some guy honked and gave me a thumbs up. Either he likes the show or my driving is improving.
Sometimes my platelets get really low. I worry that I will like just, run out. What happens then? Like is it like when a cell battery dies or your car runs out of gas? Do I get a warning light before I break down on the side of the road? Will I know what that light means? Oh god, is that light on and I don’t know it!?!?!?
Is she mad at me?
I hate water! Who hates water? Me, I hate water! Me and all the other unhealthy people on this planet.
Every time some one tells me they “Don’t eat something” for whatever that reason may be, I judge. I judge, and then I go eat whatever it is they don’t eat. Maybe that’s a really good way to get me to drink water.
Yes baby, those pictures of duckies are super cute. But I am driving and don’t want to die. Thank you. Love you more. No. Not more as in send me another GIF about how you love me more…
My dog snores. She pushes her face into the side of her pillow and scrunches up her face and neck fat and then snores. I swear she does it just to piss me off.
I want to be more independent.
This seems like an odd statement for a 32 year old woman who has a child, a husband, and a job to be making but here is what I mean.
I used to envy my friends that could be single. I was not that girl. I never wanted to be single. I always wanted to have someone. Even if I knew it would not be for long it was still someone so that I did not have to sleep alone at night. Sad. I know.
That is NOT the case now. NOW, I am with someone who I choose to be with. But I still crave that independence. As a patient you have to depend on people, doctors, nurses, PA’s, NA’s, pharmacists, social workers, anyone and everyone to help make your life right that you just crave one small part of your life that you have some kind of control over. So I am going to start taking control where I can. Forever, I use to ask for help every chance I could because I felt like I was taking on too much. But what I need to do is figure out what matters to me and hold on to that. Ask for help on the things I am willing to let go of and things I should let go of. Hold on to things that can help me feel in control of my life. I need to find this balance in every aspect of who I am. I need to define what I think makes me me, find one thing that I do that makes me feel like I am that thing, and let the rest go. Otherwise, I am going to lose who I am. I am going to lose my independence. I am reclaiming who I am and what I have worked so hard to become. I have learned so much and all of it is going to waist because of fear. And fear of what? What am I so afraid of?
I want it back. Or maybe even for the first time. I want my independence. From constant fear, from constant inferiority, and from the tyrant that keeps me constantly telling me how much I am not doing. Me.
I know I am missing a day but it is for a good reason.
I thought I had a heart attack.
But, it felt like it.
Turned out to be the worst unprovoked panic attack I have ever encountered. That’s all anyone can figure. However, I got to spend the night “in lock up” , or as normal people call it, the hospital, because the doctors were concerned about my platelet drop. BLAH! So I had to wait to talk to an Oncologist who knew something about PNH to clear me and basically say that I am not dying, right now, before I could go home. Which sucked! Because had I been a normal person they would have sent me home with some knock you out strength of Zanax and I would have been home before the sun came up. But NO! My blood cells have to be mutated, and my platelet count low, and my white blood cell count low, and my LDH level high so doctors notice my blood work and go all Dr. House on me. They think they have found something new and rare. Sorry friend, been there, done that. Read the chart buddy.
So that has been the past 24 hours. I am kind of keeping it under wraps because much like the doctors like to think that they have found a link from my chest pain to some rare condition, so does the rest of the world (aka my friends). I know they do it out of love, but they ALWAYS think that everything has to do with my PNH. They have a tendency to think that because I am “weak to start with” that things like this happen to me more often. Granted, I have my fair share of battles that some do not. But I like to think that I take most of them in stride and more than make up for them. I HATE being viewed as the “sick girl”. If this had happened to anyone else, everyone would have exhaled a sigh of relief and moved on with life. If I told anyone this happened, they would be checking in on me for days on end. Sometimes I have even forgotten that things have happened when people ask me if I am doing alright since the incident.
More ironic still, is that this is more a mental health issue than anything. Not something most people know I have because it is not as visible. There are days it is. There are days the depression is too much and it gets the best of me. When my world is upside down and hope is not a word I can define. Where sitting in a dark theatre is my chapel where I can hide and cry quietly in the back corner. When I call in with a reason why I wont be there, I would rather say that I was ill than admit that I cannot pull myself out of bed. Which is ironic because there are days where i would rather say that I have lost my mind than say that my PNH has gotten the best of me.
Like this time. It’s not that my PNH has really gotten the best of me. It’s that once again it has stopped me from living. It has stolen a day from me that I will never get back. Not because I felt ill or even lost energy. It is because of ignorance and mistrust. Doctors who refuse to do the research and refuse to listen to their patients. It is days like this I get bitter about. Days like this that make me fight harder to take charge of my life and what happens in it. It’s days like this that I will fight to get back, and never will.
I want it to go away.
It hurts from the bottom of my feet to the inside of my ears. I can feel a pressure behind my eyeballs.
I take more meds to drown out the pains both inward and outward and they make me more and more numb. Numb to my life that is happening around me. Time with my son that I am losing slowly but surely because his mommy cannot compartmentalize her issues and does not realize that sometime there is nothing you can do regarding a loan office on a Saturday so you might as well let loose and play in a store bought plastic pool that will give Eli more hours of fun then he will know what to do with.
That’s what should have happened. Instead, I look at myself in the dark and think about how it’s all my fault and what can I do to fix things and what else can be sold and how can I fix things. Why can’t I fix things? Why have I not heard back from my new contractor? Did my old contractor get the best of them? What could have possibility happened.
Tomorrow is a new day. A day filled with new goals. Filled with the feeling that I will always be playing catch up.
If I am always moving away from here, I am closer to getting there.
One of these days I am going to learn how to sleep through the night.
I will sleep through the panic.
I will breath through the stress.
I will let the anxiety roll away.
I will tell my self there is nothing I can do at 3am on a Saturday.
I will tell my self that this too shall pass.
But that was not last night. That is not right now.
I feel blah tonight.
That is no excuse not to write so I will just write that. That I feel blah and that I can’t really tell you why other than it was just a blah day.
I woke up with what I think was food poisoning. If not I was drugged in my sleep by one of the animals because I was sick regardless. So I did not move until, well, until too late in the day for me to want to admit. I managed to stomach a pb and j but I still felt rough all through rehearsal. Now I am home and ate dinner and drank a beer (like I always do after rehearsal) but now I am thinking I am going to regret that decision because once again…blah and stomach hurting and… yeah…
All I can hope for is that it really is just some bug thing and that I am not in for an emotional wave as well. They have been high lately. I have been telling myself it has been justly and trying to refocus and center myself, apologize when I need to and try to take steps back to assess things as best I can. But I keep feeling that lump in my throat riding up. I keep feeling that pain in the back of my head. I keep hearing that voice (not a real one) but that something that says I am wrong and not worth it and don’t deserve to be treated …well…treated with respect.
But these are emotions I feel often. I know how to push them aside. I know they are lies. I know when to step back. I know how to stand up for myself and when to just let go. So I am hoping that right now, I just ate something I should not have. And am going to go to sleep and hope that tomorrow won’t be so blah.
There is so much I want to be in life.
I feel like a little kid. You know when you are little and they ask you “What do you want to be when you grow up?”
When I was little, I wanted to be a mommy. After spending a long time thinking I could never be one, I got to be one. I also wanted to be a dancer. My mom spent God knows how many hours and how much money on how much training so that I could be a dancer. Now, I choreograph local shows. I wanted to be an actress. Once again, my mom spent God knows how many hours trucking me back and forth from the theatre to theatre and then sent me off to different states to I could work at other theatres so that I could live my dreams of being an actress. I also got to go to one of the best schools for Musical Theatre. Until I got sick, I was still working professionally. I still get to perform every now and then. Enough to feed my soul for sure! I always wanted to be a theatrical director. When I was young, I would boss my cousins around the living room at Sunday lunch and make them put on shows for the adults. Once I got sick, and I realized that performing was going to be more taxing on me than I had thought, I decided to go back to school for directing. I fell in love with the foot work, the research, and the big picture elements that were not always visible as an actor. It was new and exciting but also something old and familiar. Now I directed four shows this year. (That is a quite a lot for people in our neck of the woods)
Even now, there are still so many things I want to be.
I want to be a cook! I taste amazing foods and want to know how to make it. I want to host dinner parties and serve meals that will make everyone happy.
I want to be a baker! (Yes. I like food) I see cakes and tarts and cookies and they look like works of art to me. They are pieces of beauty! There is nothing so satisfying as watching someone bite into a lemon square and getting a small bit of powdered sugar on their cheek. The taste of the treats of just heaven.
I want to be a writer. I want to write something that will help some one. I want to write something that will make people laugh. I want to write something that will stand the test of time. I want to tell my story, but only the parts I want to tell. Is that dishonest? I want to write something that could be performed. I don’t think these will all be one thing. I think I will have to write a few things.
I want to travel the world. I don’t think I will every speak 6 languages. But I do want to know what the air smells like on the Swiss Alps. I want to know what Indian sand feels like. I want to eat REAL Greek food. I want to get lost.
I want to design clothes. This is all I have to say on this. I am very disappointed with the selection of clothing for women my age and my size. I want to change that. Find a problem. Fix a problem.
I want to train dogs. We will start with mine and we can go from there. But really, I would love to train dogs for the stage and screen. There is such a need for them in so many productions, it would be nice if I could help train dogs for production needs. Not to mention, I could use shelter dogs and help save some lives. (I’m a dreamer)
As I keep going the list seems sillier and sillier. But it’s not. It’s real. To me, at least. And I can’t seem to shake it. This feeling that, for what ever reason, I can do it all. And maybe I can’t. Or maybe I can. Just for a moment. Just for that moment, I was a baker. Just for that moment, I got that dog to sit. Just for that moment, I got lost…
I know I should feel bad for missing a day of writing.
And I do.
But more so physically than I do about not writing. But I do have some good things to say. One is that my friend has moved out of the ICU and is now doing much better. As happy as I am, I am trying hard not to beat my self up that I have not been there more. I am trying to tell myself that she knows that I am still dedicated to her and love her. That just because I am not there every day does not mean I love her any less. But it is hard when I see people who are there every day. Who have brought her things she need and things she wants to see. I feel like I have nothing to offer. I still have that helpless feeling I had even when she was in ICU. This is how I know I am truly being selfish.
Back to the good things though. I am going to go. I am tired and feel useless and it sucks. I know this does not seem like good. The good comes from the fact that I am going to go and watch stupid videos with my husband. He will read to me and we will watch episodes of a show until I fall asleep. It will be time together.
And that is good.
I am sure there is something amazing and profound I should be writing about.
But I don’t know what it is.
I have 3 more days until Chemo and I can feel my body giving out on me. I can also feel others around me waiting for me to give out. I feel like there are people waiting to tell me “it’s okay to be weak.”
But I am not weak.
This is not weakness.
If you think that I am a symbol of weakness, you need to reassess strength.
I may not always have the best outlook on things. I may not always be the pillar of strength that, for whatever reason, people expect cancer patients to be. But, I also know that I am not weak because my energy is depleted because of a condition that I have no control over what so ever and is not visible and everyone thinks they understand.
Regardless, I won’t give in. I will not give them that privilege. Not because I feel the need to prove to them I am not weak.
But because I have work to do. And those who are standing by watching me, and not helping me, are just in my way.
I am getting better about hanging onto the good.
I am getting better about saying thank you, and meaning it.
I am getting better about not apologizing for things that I do not need to be sorry for.
Well, I am working on it. I have always had this problem. At least for the last 10 years or so. I feel the need to be sorry for things that are not always in my control. I have trouble remembering that I do not have to be sorry for things that are not my fault. I can be sorry they are happening and thankful for others understanding but it is not my fault.
So that is my goal for the next two weeks. I get one sorry a day. I need to use it wisely so I better make sure that it is on something that I have done and not me covering someone else’s ass!