Heather Huston | See.Me
'The Power of Self is about your story, your image and the power you hold. This is your chance to share yourself and win one full year of your life paid for by Artists Wanted.'.....yeah!
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Monday, April 18, 2011
Friday, April 8, 2011
This is not me.
Oh my God it's one of those days. The kind where I wake up and my thoughts go searching for something happy, something to be excited, joyful about. Then it all comes crashing back in...LYME. I hate mornings most of the time now for this very reason. Who the hell wants to wake up like that, day after day after day? When the first thing you think everyday is 'oh fuck'.
And then start the long laundry lists of tumbling thoughts. Okay what happened yesterday? What changes did I make to treatment? What 10 new things do I have to remember today? Who did I talk to? What did I learn? Am I supposed to only eat spinach all day or apples or aloe juice? What am I out of? How fast and cheaply can I order it/them? Did I eat yesterday at all? How do I feel? Why does THAT hurt? Is my brain working? Did I do the best I could yesterday?(Try very hard to ignore guilt if this is not the case). Ignore the coffee...ignore the coffee...ignore the coffee. My god the coffee smells like 1000% comfort in a mug. The coffee smells so good I'm gonna cry. What did I want to do today? Do I think there is ANY chance of any of it actually happening? My brain hurts.
I don't match this disease. I have never thought of myself as a sick person and I never will. It goes against everything I believe in. My whole life I did the best I knew how to take care of myself, to seek help when I felt I needed it and most importantly TO NOT BE AFRAID. I was never insistent that something was wrong with me, THEY couldn't find anything (MD's ND's you name it) so I made a conscious decision everyday to rise above, to be stronger than whatever was wacking out in my body. I didn't keep lists unless it was severe, and then, just like the rest of us I would research till my brain was mush, till I had exhausted every last avenue and came up empty handed. I trained my self to ignore all but the worst of it, to not talk about it (all this does is confuse everyone around you and make them feel terrible) and to push on...shine on.
Now I am having a really hard time re-wiring my natural inclination to NOT FOCUS on any of it. Energy follows thought...thoughts become things. I don't want to spend all day every day tracking every damn symptom (there are SOOOOO many) tinkering with dosages, constantly watching, measuring. But this stupid thing makes you live like that. We are forced to be so responsible for our everyday care because so few of us get the opportunity to turn it over to a knowledgeable Dr, as there are very few. We live in a constant sate of questioning of researching of trying to stay on top of it. I am dependent now on the fabulous Lyme community on Facebook for information, all of us are. I check many times a day reading through long long posts gathering every jewel someone has discovered. We teach each other. I have 27 notebooks all over the house, I have at least 15 Post-It's on my computer everyday, I have a huge wall calender and still need a regular one too, my bookmark folders are all separated into categories and jammed with hundreds of sites and articles and reference materials and shopping lists. This is all up to us. Even with a good Doc. I like mine, I really do. He's a good person he's trying, he has compassion. But he's a PHD not an MD or ND and this causes me a lot of confusion. I can't afford to see 3 or 4 different people and am finding NJ lacking in a lot of alternative care. I have a nice primary, Chris's Dr. Very compassionate guy but he's not Lyme literate. He's aware of it and fascinated by my story, but he's had no more training than 98% of the medical community in this country. This leaves me questioning everyday if I have the best care, causing so much more of the huge anxiety we battle already. It requires so much of our mental energy to think this all through ... nearly every single day. Mental energy that anyone suffering from a Neurological disease just doesn't have. The more you learn the scarier it gets. ANYTHING can be happening in your body or many things all at once. There are no rules. Lyme causes massive inflammation that can lead to all sorts of issues. I've really come to understand lately that our issues are mainly caused by the fact that we are constantly trying to detox an enormous amount of neurotoxins that the Lyme bacteria dump into our systems. No one is built to handle this...I don't care how much of a super health person you are. How does anybody manage this? We need 30 hours in the day to take all our supplements and protocols and to RESEARCH and make perfectly nutritious organic food and do all our detox treatments and rest whether we want to or not. God forbid something big actually comes up, and now unless we want to throw ourselves at the mercy of the misinformed and non-lyme-educated hospitals, now we are even MORE responsible for making sure our bodies don't give up on us.
My house feels like a prison, my body feels like a prison, my mind feels like a prison. I just want to get away from it all. I want to be happy. I want to wake up and feel joy at the new day. I want to have much to look forward to. I want to be able to make plans. I want to give a shit that it's the weekend. I want to not feel crushingly overwhelmed for more than 1 day at a time. I'm not a sick person. I don't know if I can ever accept this.
I feel sad and overwhelmed and bitter and guilty and alone far too often. I feel way too responsible for everything . THIS IS NOT WHO I AM.
~SUPER BUDDHA RULES FOR PEOPLE WITH LYME~
Stay positive, do everything you can do, don't give up, be assertive, don't get excited, don't get upset about anything, don't get mad, don't be a victim, don't let anything get to you, don't complain, don't show fear, be hyper compassionate for those around you, be super understanding of how what you go through affects everyone else, be grateful every second, don't take anything for granted, take care of yourself, act like you're normal but get enough rest because if you push it too hard it's your fault, learn to say no (constantly), don't stress about anything!, let everything go, stay focused, stay relaxed, be happy, stay calm, don't worry, accept your limitations, don't accept your limitations, smile when you never get to leave the house as if it's your dream come true, don't let it get to you when everyone's lives are flying by and yours is barely crawling, when your friend's kids are getting big and you still haven't accepted that it's never gonna happen for you, don't feel guilty even when you're 100% dependent.. when there is no insurance/SS/Medicare/Medicaid/Financial Aid/Funding, ask for what you need, don't take anything personally, don't get irritated when people complain about the DUMBEST shit or say asinine things to you, don't get frustrated even when the most mundane tasks are a struggle for you, don't get upset when you're blamed for your foggy memory/moodiness/depression/frustration or jealousy of fabulously normal things like going to a movie or running errands or making your own money or traveling or hanging with friends. Be patient! STAY POSITIVE! be SUPER BUDDHA.
And then start the long laundry lists of tumbling thoughts. Okay what happened yesterday? What changes did I make to treatment? What 10 new things do I have to remember today? Who did I talk to? What did I learn? Am I supposed to only eat spinach all day or apples or aloe juice? What am I out of? How fast and cheaply can I order it/them? Did I eat yesterday at all? How do I feel? Why does THAT hurt? Is my brain working? Did I do the best I could yesterday?(Try very hard to ignore guilt if this is not the case). Ignore the coffee...ignore the coffee...ignore the coffee. My god the coffee smells like 1000% comfort in a mug. The coffee smells so good I'm gonna cry. What did I want to do today? Do I think there is ANY chance of any of it actually happening? My brain hurts.
I don't match this disease. I have never thought of myself as a sick person and I never will. It goes against everything I believe in. My whole life I did the best I knew how to take care of myself, to seek help when I felt I needed it and most importantly TO NOT BE AFRAID. I was never insistent that something was wrong with me, THEY couldn't find anything (MD's ND's you name it) so I made a conscious decision everyday to rise above, to be stronger than whatever was wacking out in my body. I didn't keep lists unless it was severe, and then, just like the rest of us I would research till my brain was mush, till I had exhausted every last avenue and came up empty handed. I trained my self to ignore all but the worst of it, to not talk about it (all this does is confuse everyone around you and make them feel terrible) and to push on...shine on.
Now I am having a really hard time re-wiring my natural inclination to NOT FOCUS on any of it. Energy follows thought...thoughts become things. I don't want to spend all day every day tracking every damn symptom (there are SOOOOO many) tinkering with dosages, constantly watching, measuring. But this stupid thing makes you live like that. We are forced to be so responsible for our everyday care because so few of us get the opportunity to turn it over to a knowledgeable Dr, as there are very few. We live in a constant sate of questioning of researching of trying to stay on top of it. I am dependent now on the fabulous Lyme community on Facebook for information, all of us are. I check many times a day reading through long long posts gathering every jewel someone has discovered. We teach each other. I have 27 notebooks all over the house, I have at least 15 Post-It's on my computer everyday, I have a huge wall calender and still need a regular one too, my bookmark folders are all separated into categories and jammed with hundreds of sites and articles and reference materials and shopping lists. This is all up to us. Even with a good Doc. I like mine, I really do. He's a good person he's trying, he has compassion. But he's a PHD not an MD or ND and this causes me a lot of confusion. I can't afford to see 3 or 4 different people and am finding NJ lacking in a lot of alternative care. I have a nice primary, Chris's Dr. Very compassionate guy but he's not Lyme literate. He's aware of it and fascinated by my story, but he's had no more training than 98% of the medical community in this country. This leaves me questioning everyday if I have the best care, causing so much more of the huge anxiety we battle already. It requires so much of our mental energy to think this all through ... nearly every single day. Mental energy that anyone suffering from a Neurological disease just doesn't have. The more you learn the scarier it gets. ANYTHING can be happening in your body or many things all at once. There are no rules. Lyme causes massive inflammation that can lead to all sorts of issues. I've really come to understand lately that our issues are mainly caused by the fact that we are constantly trying to detox an enormous amount of neurotoxins that the Lyme bacteria dump into our systems. No one is built to handle this...I don't care how much of a super health person you are. How does anybody manage this? We need 30 hours in the day to take all our supplements and protocols and to RESEARCH and make perfectly nutritious organic food and do all our detox treatments and rest whether we want to or not. God forbid something big actually comes up, and now unless we want to throw ourselves at the mercy of the misinformed and non-lyme-educated hospitals, now we are even MORE responsible for making sure our bodies don't give up on us.
My house feels like a prison, my body feels like a prison, my mind feels like a prison. I just want to get away from it all. I want to be happy. I want to wake up and feel joy at the new day. I want to have much to look forward to. I want to be able to make plans. I want to give a shit that it's the weekend. I want to not feel crushingly overwhelmed for more than 1 day at a time. I'm not a sick person. I don't know if I can ever accept this.
I feel sad and overwhelmed and bitter and guilty and alone far too often. I feel way too responsible for everything . THIS IS NOT WHO I AM.
~SUPER BUDDHA RULES FOR PEOPLE WITH LYME~
Stay positive, do everything you can do, don't give up, be assertive, don't get excited, don't get upset about anything, don't get mad, don't be a victim, don't let anything get to you, don't complain, don't show fear, be hyper compassionate for those around you, be super understanding of how what you go through affects everyone else, be grateful every second, don't take anything for granted, take care of yourself, act like you're normal but get enough rest because if you push it too hard it's your fault, learn to say no (constantly), don't stress about anything!, let everything go, stay focused, stay relaxed, be happy, stay calm, don't worry, accept your limitations, don't accept your limitations, smile when you never get to leave the house as if it's your dream come true, don't let it get to you when everyone's lives are flying by and yours is barely crawling, when your friend's kids are getting big and you still haven't accepted that it's never gonna happen for you, don't feel guilty even when you're 100% dependent.. when there is no insurance/SS/Medicare/Medicaid/Financial Aid/Funding, ask for what you need, don't take anything personally, don't get irritated when people complain about the DUMBEST shit or say asinine things to you, don't get frustrated even when the most mundane tasks are a struggle for you, don't get upset when you're blamed for your foggy memory/moodiness/depression/frustration or jealousy of fabulously normal things like going to a movie or running errands or making your own money or traveling or hanging with friends. Be patient! STAY POSITIVE! be SUPER BUDDHA.
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