This is one of those days that I really miss my Grandma. I can't even begin to explain what an amazing person she was. She was a caretaker. She took care of everyone. She became the mom when her mom died when she was 17, she took care of her sister when she was dying and then took care of her children, and she took care of me when everything in Utah was going wrong. She was my protector and guardian, and she was a mom to me.
Her dying in November has shaken me so badly. I sleep every night with a blanket made out of her clothes on my pillow. I can't bring myself to put it away for safe keeping. I need her close to me.
Sometimes I wonder if she's looking down from where she is and is disappointed in where I am in life. I wonder if she sees that I've quit school and wonders how she was ever proud of me. I just want her to be proud of me.
Friday, January 7, 2011
Thursday, January 6, 2011
Oh this pain
Days like these are when I really wish I wasn't a pain patient. I am in so much pain it's not even funny. I managed to finished a good portion of the Save the Dates but I am dying after it.
Poetry: O Kitten, my Kitten!
First poem in over 2 years. Inspired by Walt Whitman's "O Captain, my Captain!"
O Kitten! My Kitten! Your playtime is now done,
The mouse is weathered at the back, and you have won.
The cat tree near, the catnip here, ready for a rolling,
While follow eyes as you walk away, the cat tree calling;
But O purr! purr! purr!
O the golden eyes now shut tight,
Where upon the cat tree my Kitten lies,
Snoozing and purring so soft.
O Kitten! My Kitten! Sleep and purr away;
Sleep – for you are tired from all the play,
For you the cloth mice and cat nip balls for you the floor a-crowding,
For you they call, the cat nip working, the toys eagerly waiting;
Here Kitten! dear little girl!
This hand scratching your head!
It is some dream on that cat tree,
You’re snoozing and purring so soft.
My Kitten does not turn, her eyes are closed so tight;
My little girl feels my hand, mewing softly without a fight;
The toys lay safe and sound, their use now for the day done;
From fitful play the victor comes in with sleep time won;
Exult O mice and ring O balls!
But I, dead from cute,
Walk near where my Kitten lies,
Snoozing and purring so soft.
Tuesday, January 4, 2011
Medicine: Abilify
You know, I really wasn't sure if this was going to be a good addition. They added it because I've been in counseling and seeing a psychiatrist for over 10 years now, and it just seems like we get to a certain point and then I sway on the edge. I've been pleasantly surprised.
I have more energy, I'm doing more things for myself. I'm painting, writing, reading, and so on. I feel so much more productive, despite everything else going on.
The only bad thing is the restlessness. And I definitely can't take it in the evening because it's making my insomnia worse. But I'm willing to work around it if I can keep going at this momentum. I haven't written a poem in 2 years, and I finally did yesterday. This is a good sign.
I have more energy, I'm doing more things for myself. I'm painting, writing, reading, and so on. I feel so much more productive, despite everything else going on.
The only bad thing is the restlessness. And I definitely can't take it in the evening because it's making my insomnia worse. But I'm willing to work around it if I can keep going at this momentum. I haven't written a poem in 2 years, and I finally did yesterday. This is a good sign.
Monday, January 3, 2011
Doctor review: Mark Pellegrino
I think a big part of the pain community is sharing in the doctors we find that are amazing... and sharing the ones who aren't so amazing. We have to look out for each other because some of these doctors don't have the right intentions, or the heart that is needed for something as difficult as chronic pain.
Mark Pellegrino, who practices in Canton, Ohio, is supposed to be one of the leading physicians in Fibromyalgia. I was sent to him after my diagnosis because of how good he was.
And he was really good... in the beginning. But the longer I didn't get better, the worse he got. He would get annoyed with me; trying to make it out like I wasn't doing enough to make myself better. In fact, in our last appointment, he told me I was refusing to get better because I wanted money for disability.
1. It's not that much money. Certainly not enough for this type of headache.
2. I WANT to be better. I don't want to feel like this.
He's refused, so far, to send me my medical records. When I asked for them, he just sent his notes which read as very passive-aggressive against me the more time that went on. They told me today that they would send all the files. I've been trying to get them for over a year. They won't send my medical notes, the results of the tests he ran, or anything else. We'll see if they send it now.
I can't begin to describe to you how it feels to be told you are refusing to get better. I felt cold, numb. My whole body seemed to tingle with pain. No one should be told that.
I can't recommend this doctor. If you are the type that will get better on small treatments, then by all means, see him. But if you might be one of the many who doesn't get better so easily, or at all, stay away from him.
Mark Pellegrino, who practices in Canton, Ohio, is supposed to be one of the leading physicians in Fibromyalgia. I was sent to him after my diagnosis because of how good he was.
And he was really good... in the beginning. But the longer I didn't get better, the worse he got. He would get annoyed with me; trying to make it out like I wasn't doing enough to make myself better. In fact, in our last appointment, he told me I was refusing to get better because I wanted money for disability.
1. It's not that much money. Certainly not enough for this type of headache.
2. I WANT to be better. I don't want to feel like this.
He's refused, so far, to send me my medical records. When I asked for them, he just sent his notes which read as very passive-aggressive against me the more time that went on. They told me today that they would send all the files. I've been trying to get them for over a year. They won't send my medical notes, the results of the tests he ran, or anything else. We'll see if they send it now.
I can't begin to describe to you how it feels to be told you are refusing to get better. I felt cold, numb. My whole body seemed to tingle with pain. No one should be told that.
I can't recommend this doctor. If you are the type that will get better on small treatments, then by all means, see him. But if you might be one of the many who doesn't get better so easily, or at all, stay away from him.
Sunday, January 2, 2011
The road to disability
About 3 years ago, I started on the journey of trying to get disability for my fibromyalgia, heart condition (POTS), and anxiety. Mom wasn't sure about doing it until we got the diagnosis from Dr. Jaeger about the heart. Then she decided it was time to try for disability. We spent weeks getting all of the paperwork done to send out.
I was sitting in my bed that I shared with my then fiance and filling out a questionnaire when I made a small comment about how he could handle living with someone like me. And that got me dumped. I was dumped because I was sick and he couldn't handle it anymore.
In February, everything comes to the final decision from the judge.
I'm taking in a bunch of paperwork to have the doctors fill out tomorrow. Thanks to Asher, we now have the money to pay for the multiple disability paperwork. It costs around $350 for 1 doctor from Cleveland Clinic. We have 2 (though now it's looking like 3) from there. I'm hoping we can do everything in time and get it to the judge before I go in to talk to them.
I need this. I can't work, and no one would hire me. The pain is too bad, my legs are too weak, my migraines are too unpredictable. And the heart is just as unpredictable and challenging.
I have more to say, more to say to prepare others for the horrible experience. But I'm on my Ambien and getting a little loopy.
I don't know what I'll do if I don't get that disability.
I was sitting in my bed that I shared with my then fiance and filling out a questionnaire when I made a small comment about how he could handle living with someone like me. And that got me dumped. I was dumped because I was sick and he couldn't handle it anymore.
In February, everything comes to the final decision from the judge.
I'm taking in a bunch of paperwork to have the doctors fill out tomorrow. Thanks to Asher, we now have the money to pay for the multiple disability paperwork. It costs around $350 for 1 doctor from Cleveland Clinic. We have 2 (though now it's looking like 3) from there. I'm hoping we can do everything in time and get it to the judge before I go in to talk to them.
I need this. I can't work, and no one would hire me. The pain is too bad, my legs are too weak, my migraines are too unpredictable. And the heart is just as unpredictable and challenging.
I have more to say, more to say to prepare others for the horrible experience. But I'm on my Ambien and getting a little loopy.
I don't know what I'll do if I don't get that disability.
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