So… here we are again fair reader… (yeah yeah… it is a weird morning… give me a break)… It has been a long week… and my body is reminding me that it has been a long week. This week… Adam … Continue reading
This gallery contains 1 photos.
I’m not sure why the picture seems like it goes with this… but hey…it was a breathtaking morning. It is pager patrol week. It is not my FAVORITE week in the whole month but it is what it is. I … Continue reading
It’s o-dark-thirty. I’ve been up for over an hour and I can’t get back to sleep. “Little People Big World” is on the television. There is a train going through down on the tracks. The cuckoo clock just sang it’s … Continue reading
Happy (I guess happy…) National Invisible Chronic Illness Week. Realizing that this is the week to make invisibility visible… I’ve been thinking about just how many people I know (or how many people I might know) who have invisible conditions. … Continue reading
Sitting in the quiet, early morning dark… hot coffee keeping me company. This morning’s Sunrise Earth is balloons over the New England states. I’m homesick early this year…I really want to sit and have a cup of coffee with my … Continue reading
This gallery contains 1 photos.
It’s early this morning, I have a dog snuggled up next to me, all sprawled out on her back asleep. Iced coffee is sweating on the night stand and I’m sitting on the bed thinking. Graduation is in one week. … Continue reading
Okay, well, it sounded like a cool title.
Today is International Purple Day… a day to raise awareness of Epilepsy world wide. It was started in 2008 by a nine year old girl in Nova Scotia. SHE is an inspiration…
Last night, I went to the Round Rock City Council Meeting to accept the Proclamation of Purple Day in Round Rock Texas. It meant a lot to me and I really don’t know why… other than this town actually took the time to respond to my email campaign and to reach out to its citizens…. it mattered.
Before the meeting, the Mayor came and introduced himself to me. I’m impressed by our mayor. He has a good handshake… not the I’M A MAN WINCE BEFORE ME kind of handshake that I have come to fear (heck, I fear a lot of handshakes… but those are the worst on my knuckles)… not the oh… you are a girl… I will be weak and patronizing kind… those are easier on the knuckles but not on the self esteem…. he had a gentle warm and welcoming hand shake.
And purple tie! It made me smile.
This morning I got an email from the news paper wanting to do an interview (okay… it is a weekly paper with a limited distribution, but it IS a newspaper… and it will help get the word out). I know there will be a photographer and the reporter. Okay, the reporter is female, which means the hand shake will be less intense. Not sure about the photographer.
I pride myself on my handshake. I refuse to wince. I refuse to have a wimpy handshake. I know that I base a lot on the way someone shakes hands and I figure other people do too.
SO today, I am bowing to the patron saint of naproxen sodium. I don’t hurt badly enough to take the anti inflamitories (even though my knuckles probably could use the help… something is up with some extra stiffness and extra achey-ness… ). I think the little blue pills (not the tiny blue pills… the ones in the stomach yukky isle… those are for other purposes…. grin) but the little bright blue pills that make the hand shakes magically not so bad.
This is important.
As much as RA matters to me because it is personal and it is mine and I’m trying to live with it and embrace what I can do and what I can affect… Epilepsy matters more because she is my kid and it matters.
Happy Purple Day.
Yesterday I went on adventure. Okay… it was a LITTLE adventure, but it was fun and it was something I had wanted to do for quite a while. I went to the library. Not the one I usually go to… … Continue reading
It’s been another not so great day. The weekend, on the whole, wasn’t horrible. The 10 MTX did hit me hard but it wasn’t totally unexpected and a little extra nappy poo helped. Tea helped. Hot bath helped. It wasn’t … Continue reading
Okay, I have started to not like this game, at all… Man… got up this morning and hurt… everywhere.
Yesterday, I probably should have seen it coming, but I’m still not always remembering that I have RA and sometimes RA hurts when you don’t expect it to and that sometimes it hurts when you should expect it to and that I can sometimes affect when it hurts.
I should have realized and taken steps to try to counteract it ahead of time.
Yesterday was a forgetful day for my kid. I don’t know if it is the epilepsy or the meds to treat the epilepsy but she totally zoned out yesterday. She went from telling me to remind her that she needed to go to tutorials after school to two min later not knowing why she had to go, not knowing she missed a test, not knowing she was failing because she missed the test…. not knowing who the teacher was she missed the test for… not knowing we had a dog…
If it wasn’t her (she just isn’t “with it” enough for long enough to come up with this on her own for 3o min so I don’t think it was her playing and it seems to follow a pattern) then it is something and we need to find the something.
She got caught in a lie… and this lie is a big one for the current situation… and she knows it.
DH was screaming at her. She was screaming back. I was trying desperately to get my albuteral out of its box so I could actually breathe. She thinks everyone except her friends (FRIENDS? really? don’t get me started right now) suck totally and she wants to move in with them because we are mean and don’t let her have a life and don’t let her do whatever she wants and we put a roof over her head and provide food she refuses to eat most of the time and provide her with an IPod and a cell phone plan that lets her talk all the time to everyone and surf the net when she wants and go out and put the extra hundred or so dollars to the money she has for clothes to buy her the extra couple pair of jeans just because she wants new jeans… but we are unreasonable because we want her to turn in her homework so she won’t get -0- and fail and we want her to not lie all the time and we expect her to let us know where she is so if she has a seizure we know where to find her…
We are horrible parents.
She thinks “Shadow” has the right idea and that maybe emancipation would be a GREAT thing (at 15… she can’t carry the bowl of peanut butter down the steps when she comes down stairs so we don’t get ants in her room or mice but she is going to go out and get a job and an apartment and handle her own medical situation when OH Hey she can’t drive because of the epilepsy is so new).
So… long rant finally getting to the point. With all of the drama and the fact that I went down to the park and cried and threw rocks at the creek and cussed under my breath in the rain… this morning I hurt. My knuckles hurt. My wrist hurts. My ankles and toes hurt and my chest hurts… kind of inside breathing kind of hurts.
So, back on the aleve and maybe I will have to cave in and take a prednisone just because I have to drag her butt to the doctor today…