– Tomorrow, there will be a surplus of moody 12 and 13 year old children in my home playing video games and eating food and then some are sleeping over
– Sunday, I will be recovering from all of the noiseThis last batch of infusions reduced my pain a bit, but today I’m super dizzy and nauseous. I have more infusions again starting on the 6th, right after another Botox treatment.
The lovely Dr. H. said, “We are limited by having to be reasonable.”
“We are limited by having to be reasonable.”
That is both beautiful and tragic. I have a feeling the woman would love to just load me up with a ton of chemicals and see what happens. She feels so bad for me.
The Jefferson Clinic called. My appointment is on July 17th. I have to have a psych evaluation there in addition to meeting with the neurologist. I think my appointment is at 11:45. I don’t recall. It’s a Wednesday, I believe. I could look at a calendar. They are sending me a packet. They said the appointment will last four hours.
Golly I hope that I am “healed” well before July. I lose my job on August 6th if I am not better. I have made it half way through the bajillion pages of my long term disability application. Luckily my short term disability supplier will send their records to my long term supplier so I don’t have to go through the nightmare of trying to obtain records from my doctors again.
It’s been a rough road.
I think the worst part is that my head still hurts, and every time I get a treatment I feel like a failure if it doesn’t work. I feel like I have personally let my family down, along with everyone else. People care and ask how I am, and I immediately feel awful for not being able to tell them that I am, ” just dandy, thanks!”
I don’t feel comfortable unloading on any one person, but then I’ve never been good at talking about feelings in any rational or coherent way.
It hurts when people ask me how I am, and then seem put off by the fact that I’m not better yet. They don’t do it in any obvious way, but the conversation becomes stilted. I can converse about any number of topics. I avoid talking about my condition with friends unless they specifically ask or have been involved in this whole process in some way. So it really stinks when friends who used to text me all the time or work with me send me a message and the conversation goes like this:
FRIEND: Hey! Haven’t heard from you in a while. How are you doing? All better now?
ME: Hi there! Nah, same as I have been. But I’m hanging in there! It’s so nice to hear from you. How is that thing you were doing with that thing?
FRIEND: Oh, I thought you’d be all fixed now. Sorry you’re going through this.
ME: It’s fine. Sometimes things happen to people. Anyway, what about that thing? I’m excited to hear all about your trip to that place!
FRIEND: It must be really awful to be in all that pain. I can’t imagine. I’d be so depressed.
ME: Life is what you make of it, you know? How was your trip?
FRIEND: Well let me know if you need anything. Keep me updated on everything.
ME: No problem. So how are YOU?
FRIEND: I’m good. Really busy though. Catch up with you some other time?
ME: Sure. Take care.
Here’s the problem I have with conversations like that: obviously I’m trying to be upbeat and minimize my broken head. I am not defined by my broken head. I am not my broken head. My broken head is something that is happening to me that is awful, but it’s not my fault and I can’t make it just go away. I deal with it every day. It’s just what my life is like right now. I’m not happy about it but I had to make up my mind that crying about it every day wasn’t going to cure me any faster. So let me be positive and tell me about the good things happening with you! Please?
I am not my broken head.
Keep you updated? Okay, I will add that to my to do list. You just told me you are too busy to have a pleasant conversation with me about YOU, and yet you want me to remind myself to tell you all the bad shit that is happening with me? You just brushed me off because you aren’t comfortable talking to a sick person. That JUST happened, and you want me to update you? Really? No. No. If you want to know how I am, pick up the phone, buddy. You aren’t my immediate family or taking me to treatments or caring for my kid on the weekends or holding my hand in any way through this process, so I am not going to give you the bullet points unless you ask.
Here’s the T and nothing but the T so help me whomever- I’m miserable and worried sick and losing my mind being at home all the time without being able to do anything. I am overjoyed to receive texts, phone calls, e-mails, anything… because I don’t see people on a regular basis. When I do see people I’m so drugged out of my mind on painkillers just to be able to deal with normal things like the grocery store or, heaven forbid, a restaurant, that I don’t know what I’m saying. It literally hurts to be touched, in bright light, or in any kind of loud place. I can’t drive at night. I have to wear these huge goofy sunglasses everywhere. It is horrible. All of it. I miss people and my job.
But that doesn’t mean I want to talk about it all of the goddamned time. Does it occur to these people that maybe I need distractions? My sanity is supported by nothing but distractions. Writing? Distraction. Ukulele? Distraction. Podcasts? Distraction. Documenting my insane medical whatever? Distraction. Listening to television shows and sneaking peeks at them when the sound just doesn’t tell me what’s going on? Distraction.
Blah. I don’t even know what I’m talking about anymore. I have to find something to eat that I don’t mind possibly throwing up in half an hour and then try to rest a bit before I start ordering the boychild about.