Sometimes something prevents me from taking the full range of my medication. Or, I will take a day off from it. Or, like now, I am on an "experiment" for the great MS/lupus fatigue and brain fog conundrum... so I am taking different medications every other day or so.
Day one is a child's dose of an adhd med, day 2 something more just for awake but no stimulant. I then take different doses of the meds to see which dose will be "the sweet spot." I don't want to induce seizures (so things for adhd (which I do not have) are less positive but antiseizure meds make me dumb and bring fog makes it harder to concentrate). The things that keep you alert and awake help with the fatigue and feeling tired - but I still can't necessarily remember my social security number or middle name let alone be very intelligent on certain days.
I'm looking for what works. Today I took neither. I feel like someone threw me against a wall. Twice. A dozen times. Thinking or getting out of bed feels laughable. And yet- this is how it goes. In order to find "the sweet spot" I need to make short term sacrifices in how I FEEL.
The big hitting meds are doing the job. My doctors and pharmacist are working really well with money and doses (like one expensive medication costs less if I take 3 doses of 250 mgs 2 times a day instead of 750 mgs 2 times a day). It it the difference between a $30 co pay and a $100 co pay. I'm happy to swallow more pills to pay less.
I feel like the big things are getting ironed out slowly. And now I am tweaking. By the time we are tweaking - there is less to complain about. I have hope. It is worth it to feel better, to think better- and ultimately the better I feel the more I can do and give to others.
Today - I don't feel good. So I am resting, being calm, and snuggling my cat. I wanted to do more. But I realize that sometimes we can't be "big game hunters." Sometimes less is more. I'm focusing on the long term gains.
Today what I have are small things. Tomorrow I might have more.
My focus is on water - over time it will cut a rock in half it is so strong and powerful. Even a drop of it over time will bore a hole clean through. Every day if I do exactly what I need to do- what I CAN DO - it will be EXACTLY ENOUGH. Somedays - the most courage we have is just getting out of bed (or perhaps staying bed but not giving up).
Every element has its great importance - but mine - mine is water. I am water - flowing - I will do what I must. And it WILL be enough. I will endure. It will matter. And I will matter.
Wednesday, March 28, 2012
Tuesday, March 13, 2012
When Things Are Not Your Fault- Speaking Out
I am going to blog about something I have yet to speak about. Until now I have kept quiet. I am speaking out for several reasons.
1) Women in general, but men too usually keep a culture of silence when bad things happen to us. Why? Because when illness, or cyber bullying, rape, sexual abuse, or job loss occurs we believe it splashes over and sullies us more.
2) I'm TIRED of that culture of silence. I'm TIRED of feeling ashamed and letting others cower. I'm tired of feel ashamed or mortified while the people who SHOULD BE ASHAMED OF THEMSELVES stand wrongly tall in their bullshit.
3) When bad things happen and you did nothing wrong - IT IS OK TO TALK ABOUT IT. It is OK to heal. Clearly you have to pick your audience. Clearly you have to pick the people you trust. But you do not have to live in a world of silence and pain forever. And you do not have to live alone and afraid. I AM NOT OK WITH SILENCE AND PAIN. I AM NOT OK WITH BEING ASHAMED FOR THINGS YOU DID NOT DO OR CAUSE.
Today I am speaking out specifically about a moment a couple of weeks ago when I was specifically targeted for cyber bullying. Now- I want to iterate that this could be about ANYTHING that causes shame. However, I am standing up and speaking out. I went through moments where I was quiet and said nothing. I realized that the four people who were bullying me were ANONYMOUS. THEY had nothing to lose.
I myself have stood firmly for anonymous people online. Why? Because there is often a reason for having the ability to say what must often go unsaid. However - there is a saying online, "Those who can do, those who cannot, bully." And right now, there is no good sociological or criminological explanation for bullying. There just isn't. It is a gang-up type response. And that is what happened to me. People were seemingly nice and then they were not. And online people who used to be nice to me suddenly distanced themselves from me or didn't talk to me anymore. (And frankly- those people lost my respect more than the bullies because those people had less strength of character than a pack of bullies who might be caught up in the furor of the moment).
Meanwhile- I will not name the four people. Why? Because I will not give them the attention they so richly DO NOT DESERVE. I am not a politician. I am not a celebrity. I am not online to gain popularity or votes or publication. I came online to reach out in the darkness of illness. I have often worried that writing about a shitty topic like invisible illness might even keep me from potential jobs. I have worried about it with my mentor and discussed it with my colleagues. "Should I talk about illness and caretaking and cancer and lupus and autoimmunies online?" Should I deal with it in such a vulnerable way? I have heard a variety of responses but all of them indicated that it was a necessary thing to do, like having children - we must do this thing. We MUST stop being silent about what effects us or the silence will slowly kill us anyway.
AND THAT IS WHY I AM BLOGGING ABOUT BEING BULLIED.
Four people ganged up on me. They mocked me. They claimed I was not sick or used it as an excuse. They claimed I stalked their house. They called me names like psycho and sociopath and claimed to have called the police to their home to protect them from me- indicating I was a dangerous person. They said I walked out of a check at a restaurant - throwing my fork to the ground to create a diversion- then running out quickly to avoid paying a check - where a friend and I dined with them, making me look like thief as well. They called me a slut and whore - someone who brings men I meet online back to have sex with multiple strangers. They laughed and mocked and took great cackling joy in unmaking that which is innocent and NOT TRUE.
And worse - They made a joke of the kindnesses I have given people - with loving words. These things I have done - the ONLY REASON I ever came to be online - to reach out to those who also had illness or were dealing with someone with illness - caretakers. They made jokes about the loving words I have shared in the darkness when all else seemed to fail. They mocked the kindness. And yes - it hurt. Bullies know how to hurt because BULLIES ARE HURT INSIDE. THEY laugh and they mock.
Each of these people have in turn before the bullying shared deeply intimate life details with me. I will not retell here. Why? Because they are indeed people. And while I find their ACTIONS monstrous they themselves deserve the compassion and humanity they have not shown me (and have not dealt with others either).
People would ask me. "Who is the hater?" And I would say, "I do not feel like discussing this drama. I have no desire for it." But I wanted to scream it. Then I realized I was doing myself and the world a disservice. I was secretly ashamed. I DID NOTHING WRONG.
I AM NOT THIS PERSON. As Seneca said, "All cruelty springs from weakness." I am not weak. And I am not cruel. I am not seeking attention AND I WILL NOT GIVE IN TO FOUR BULLIES WHO GIVE ME SHITTY ATTENTION OR NEGATIVE BULLSHIT.
I speak out for every person who has been bullied. I speak out for the silent people. I speak out for every time I never told anyone I was sick. I speak out for every person who is ashamed or afraid or silent for any reason.
I am not the things they say.
The worst thing on the planet is hiding in fear.
I am speaking out mostly because I am angry for hiding at first. I did not want to "ad to the drama." But also because I did feel ashamed that it happened at all.
IF YOU ARE A BULLY AND YOU ARE VICTIMIZING OTHER PEOPLE TO GARNER OR HURT OR HARM - SHAME ON YOU. SHAME ON YOU. SHAME ON YOU.
That you would waste your time tearing others down rather than building up- SHAME ON YOU. I CALL BULLSHIT. I CALL BULLSHIT ON YOU AND YOUR WASTE OF TIME AND YOUR WASTE OF LIFE. I have one, as small as it is, at least I have been reaching and giving back. So mock it - I stand proud in what I have done - which is to create a light where there was darkness. I have NO SHAME.
1) Women in general, but men too usually keep a culture of silence when bad things happen to us. Why? Because when illness, or cyber bullying, rape, sexual abuse, or job loss occurs we believe it splashes over and sullies us more.
2) I'm TIRED of that culture of silence. I'm TIRED of feeling ashamed and letting others cower. I'm tired of feel ashamed or mortified while the people who SHOULD BE ASHAMED OF THEMSELVES stand wrongly tall in their bullshit.
3) When bad things happen and you did nothing wrong - IT IS OK TO TALK ABOUT IT. It is OK to heal. Clearly you have to pick your audience. Clearly you have to pick the people you trust. But you do not have to live in a world of silence and pain forever. And you do not have to live alone and afraid. I AM NOT OK WITH SILENCE AND PAIN. I AM NOT OK WITH BEING ASHAMED FOR THINGS YOU DID NOT DO OR CAUSE.
Today I am speaking out specifically about a moment a couple of weeks ago when I was specifically targeted for cyber bullying. Now- I want to iterate that this could be about ANYTHING that causes shame. However, I am standing up and speaking out. I went through moments where I was quiet and said nothing. I realized that the four people who were bullying me were ANONYMOUS. THEY had nothing to lose.
I myself have stood firmly for anonymous people online. Why? Because there is often a reason for having the ability to say what must often go unsaid. However - there is a saying online, "Those who can do, those who cannot, bully." And right now, there is no good sociological or criminological explanation for bullying. There just isn't. It is a gang-up type response. And that is what happened to me. People were seemingly nice and then they were not. And online people who used to be nice to me suddenly distanced themselves from me or didn't talk to me anymore. (And frankly- those people lost my respect more than the bullies because those people had less strength of character than a pack of bullies who might be caught up in the furor of the moment).
Meanwhile- I will not name the four people. Why? Because I will not give them the attention they so richly DO NOT DESERVE. I am not a politician. I am not a celebrity. I am not online to gain popularity or votes or publication. I came online to reach out in the darkness of illness. I have often worried that writing about a shitty topic like invisible illness might even keep me from potential jobs. I have worried about it with my mentor and discussed it with my colleagues. "Should I talk about illness and caretaking and cancer and lupus and autoimmunies online?" Should I deal with it in such a vulnerable way? I have heard a variety of responses but all of them indicated that it was a necessary thing to do, like having children - we must do this thing. We MUST stop being silent about what effects us or the silence will slowly kill us anyway.
AND THAT IS WHY I AM BLOGGING ABOUT BEING BULLIED.
Four people ganged up on me. They mocked me. They claimed I was not sick or used it as an excuse. They claimed I stalked their house. They called me names like psycho and sociopath and claimed to have called the police to their home to protect them from me- indicating I was a dangerous person. They said I walked out of a check at a restaurant - throwing my fork to the ground to create a diversion- then running out quickly to avoid paying a check - where a friend and I dined with them, making me look like thief as well. They called me a slut and whore - someone who brings men I meet online back to have sex with multiple strangers. They laughed and mocked and took great cackling joy in unmaking that which is innocent and NOT TRUE.
And worse - They made a joke of the kindnesses I have given people - with loving words. These things I have done - the ONLY REASON I ever came to be online - to reach out to those who also had illness or were dealing with someone with illness - caretakers. They made jokes about the loving words I have shared in the darkness when all else seemed to fail. They mocked the kindness. And yes - it hurt. Bullies know how to hurt because BULLIES ARE HURT INSIDE. THEY laugh and they mock.
Each of these people have in turn before the bullying shared deeply intimate life details with me. I will not retell here. Why? Because they are indeed people. And while I find their ACTIONS monstrous they themselves deserve the compassion and humanity they have not shown me (and have not dealt with others either).
People would ask me. "Who is the hater?" And I would say, "I do not feel like discussing this drama. I have no desire for it." But I wanted to scream it. Then I realized I was doing myself and the world a disservice. I was secretly ashamed. I DID NOTHING WRONG.
I AM NOT THIS PERSON. As Seneca said, "All cruelty springs from weakness." I am not weak. And I am not cruel. I am not seeking attention AND I WILL NOT GIVE IN TO FOUR BULLIES WHO GIVE ME SHITTY ATTENTION OR NEGATIVE BULLSHIT.
I speak out for every person who has been bullied. I speak out for the silent people. I speak out for every time I never told anyone I was sick. I speak out for every person who is ashamed or afraid or silent for any reason.
I am not the things they say.
The worst thing on the planet is hiding in fear.
I am speaking out mostly because I am angry for hiding at first. I did not want to "ad to the drama." But also because I did feel ashamed that it happened at all.
IF YOU ARE A BULLY AND YOU ARE VICTIMIZING OTHER PEOPLE TO GARNER OR HURT OR HARM - SHAME ON YOU. SHAME ON YOU. SHAME ON YOU.
That you would waste your time tearing others down rather than building up- SHAME ON YOU. I CALL BULLSHIT. I CALL BULLSHIT ON YOU AND YOUR WASTE OF TIME AND YOUR WASTE OF LIFE. I have one, as small as it is, at least I have been reaching and giving back. So mock it - I stand proud in what I have done - which is to create a light where there was darkness. I have NO SHAME.
Monday, March 5, 2012
Create Joy
I was so nervous about coming to Atlanta. I usually am. I worry that it will be different (it usually is). I worry that people won't remember me. (They do). Or that it won't be "my" city anymore... (it is still a city that I know and love- though it changes each time I visit.)
The second day I was here something with the most perfect timing happened. The sprinkler went off in my storage unit and I had to sort and inventory my things. It was NOT how I wanted to spend my time here - especially during so many doctor visits (often 2 a day) as well as meeting with my chair and trying to reconnect and visit.
But- like most life events - it worked out. My friends showed up after work with flash lights and markers and helped me inventory. It was so humbling. And all those memories washed over me - of when I was someone's birth partner when she had no boyfriend. And now she was here next to me sorting and chatting away and my heart was full of joy. Memories. Laughter.
I gave away many items and kept things that were gifts, useful things, and 3 very important antiques. Tomorrow they will be packed up and taken with me... just the important things. Most things I gave away and donated. I can get more wine glasses. I get get more of most things. A dear friend has my mixer. Another has a crock pot. They were all people with whom I have years of shared memories and joy.
And I had time and space to put on my disconnection during my birthday week. I miss my cat. I miss my family. And I have restored love for both Atlanta and Ohio.
I'm so grateful for the amazing friendships and connections in my life. I'm grateful to know just how profoundly we have all given to each other. And I'm overjoyed for the love in my life. I was hurting the other week. But I realize that sometimes it does, as it was once wisely noted, take courage to be vulnerable. And have boundaries. And walk away from what doesn't work in our lives. It takes courage to stop dating people who aren't right for us. Or start dating after a long time. Or take care of ourselves. Or bring ourselves to the world. It also takes courage to have boundaries, to know our own worth, and ask for what we want.
Travel and trips always change me. They give me time to reflect. And this time - I got to visit and bring the last of the possessions in my storage unit home with me. This was probably my most calm and joyous trip yet though it did involve a bit more work and expense.
My heart is happy. I'm leaving with a sense of joy and renewed faith in people. I'm also positive that there is always good timing. And things may not work out "for a reason"... but they do work out. Nothing good goes away.
Today is the birthday of a woman I love deeply. She died hitting a tree after we both said, "I don't care if I ever see you again." I have talked about her before. But it was that day YEARS ago that I chose actively not to put my energy into hatred but into building each other up. I love you Rachel. I talk to you every day. I am so sorry that I will never see you again. Getting to know your mother and sister better is NEVER compensation for what you brought to the world. I still have my compass and I often look at it and hold it, "so I'll always know my direction in life." Love, Labyrinth
Today is the day that my friend N's mother died of hep C. I can only bear witness to her and her brother's grief as they share pictures and stories on facebook and have memories. I have reminded them both that I see their mother every day through their hospitality and love and the cookouts they invited me and my family to. They share their mother in what they give to the world. Losing people is a big deal and we never expect it till it happens. I am bearing witness in my blog post because I want to respect and honor it.
I was finally able to let go of nursery furnishings and decorations in my storage unit. I was able to let go. It was time. I realized that my grief has run its course. Life is beautiful and amazing and silly and stupid and ugly and horrific and tragic. But it is worth holding on to and loving people through. And when the people we love are gone - they don't even have the decency to come back and press hand prints on our windows anymore or smudge and smear or make messes in our lives. They're just gone. I'm sending so much love to the woman who took away the things. Create joy. What else is there? Even without happiness there can be joy. But right now, I'm even fucking happy for a change.
The second day I was here something with the most perfect timing happened. The sprinkler went off in my storage unit and I had to sort and inventory my things. It was NOT how I wanted to spend my time here - especially during so many doctor visits (often 2 a day) as well as meeting with my chair and trying to reconnect and visit.
But- like most life events - it worked out. My friends showed up after work with flash lights and markers and helped me inventory. It was so humbling. And all those memories washed over me - of when I was someone's birth partner when she had no boyfriend. And now she was here next to me sorting and chatting away and my heart was full of joy. Memories. Laughter.
I gave away many items and kept things that were gifts, useful things, and 3 very important antiques. Tomorrow they will be packed up and taken with me... just the important things. Most things I gave away and donated. I can get more wine glasses. I get get more of most things. A dear friend has my mixer. Another has a crock pot. They were all people with whom I have years of shared memories and joy.
And I had time and space to put on my disconnection during my birthday week. I miss my cat. I miss my family. And I have restored love for both Atlanta and Ohio.
I'm so grateful for the amazing friendships and connections in my life. I'm grateful to know just how profoundly we have all given to each other. And I'm overjoyed for the love in my life. I was hurting the other week. But I realize that sometimes it does, as it was once wisely noted, take courage to be vulnerable. And have boundaries. And walk away from what doesn't work in our lives. It takes courage to stop dating people who aren't right for us. Or start dating after a long time. Or take care of ourselves. Or bring ourselves to the world. It also takes courage to have boundaries, to know our own worth, and ask for what we want.
Travel and trips always change me. They give me time to reflect. And this time - I got to visit and bring the last of the possessions in my storage unit home with me. This was probably my most calm and joyous trip yet though it did involve a bit more work and expense.
My heart is happy. I'm leaving with a sense of joy and renewed faith in people. I'm also positive that there is always good timing. And things may not work out "for a reason"... but they do work out. Nothing good goes away.
Today is the birthday of a woman I love deeply. She died hitting a tree after we both said, "I don't care if I ever see you again." I have talked about her before. But it was that day YEARS ago that I chose actively not to put my energy into hatred but into building each other up. I love you Rachel. I talk to you every day. I am so sorry that I will never see you again. Getting to know your mother and sister better is NEVER compensation for what you brought to the world. I still have my compass and I often look at it and hold it, "so I'll always know my direction in life." Love, Labyrinth
Today is the day that my friend N's mother died of hep C. I can only bear witness to her and her brother's grief as they share pictures and stories on facebook and have memories. I have reminded them both that I see their mother every day through their hospitality and love and the cookouts they invited me and my family to. They share their mother in what they give to the world. Losing people is a big deal and we never expect it till it happens. I am bearing witness in my blog post because I want to respect and honor it.
I was finally able to let go of nursery furnishings and decorations in my storage unit. I was able to let go. It was time. I realized that my grief has run its course. Life is beautiful and amazing and silly and stupid and ugly and horrific and tragic. But it is worth holding on to and loving people through. And when the people we love are gone - they don't even have the decency to come back and press hand prints on our windows anymore or smudge and smear or make messes in our lives. They're just gone. I'm sending so much love to the woman who took away the things. Create joy. What else is there? Even without happiness there can be joy. But right now, I'm even fucking happy for a change.
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