I think I understand the rationale behind commune living. Since my day to day activity cannot be predicted I get the lure of wanting someone else there to do what I do on my shitty days. i would not be so stupid as to want to clone another "me" . right another person on the couch, where would the dogs lay down? No, what i need is a "Big Love" arrangement so another wife/Mom could pick up my slack. Rich people call this " help" and we are not in that tax bracket so I am still searching for another term, or situation. We are not Mormon so "sister wives" is out. DJ would not do well on a commune since he would have tp be in charge. Cole could not live with a bunch of hippies although Mason might dig the permissiveness and would probably enjoy debating some of our "brethren". No I can't see either of those as options.My mind goes to magical thinking when I start thinking about the Eva solution. I have such little faith in medicine that I consider conjuring a helper fairy more likely than me getting better.
On a good day i can do so many things! And when the big steroid guns are pulled out - just watch me go! I am amazing. The bull shit thing about that is it never lasts. I haven't actively tried to sell my jam in over 4 weeks. I am both embarassed and ashamed of my lack of commitment to my business. ti
he bottom line
Sunday, July 21, 2013
Tuesday, June 18, 2013
Lupus fucks with me on a daily basis. Today I am thrilled to be going out with friends I have not seen in years, childhood friends that have been with me through so much. Even as I am so excited to go out with them in the same moment I wonder how I will manage to get through the evening. Having a chronic illness is humiliating. I wonder what my friends will think of my weight gain, how I will fake it through the pain and most of all why can't today be one of the good days? I get so sick of the focus being on Lupus and so tired of everything that goes with it. The endless tests, drugs and then more drugs and the surprising lack of answers. There is this misconception that modern medicine can solve everything and it is such bull shit. There might be a test to tell you what is wrong and why you might have that particular symptom but often there is no solution. My doctors treat my symtptoms to the best of their ability but there is no cure. The root of the problem is there, always mocking me and any plans I have. I feel like I have to have a fuck you attitude when it comes to Lupus. Without that bravado I am left with feelings I find unacceptable: anger, loneliness, alienation and hopelelessness. I can't accept that.
I cannot get below 15 mg. of prednisone without my whole life falling apart. I try to taper and end up with excruciating joint pain, crazy ass CNS symptoms and complete inertia. Tweaking my pain medication dosage messes with my head. Yet another irony of this illness is that the narcotics are less benign than the steroids and the chemo drugs yet, for me as an addict, I prefer more steroids to pain meds. This is a constant struggle. It is a cruel joke to be a recovering addict who requires pain medication to maintain some quality of life. I can never forget how it was and why I have to keep up this vigilance but I am not going to say it is easy.
My floor is covered in dog hair, garden needs weeded and I have about 14 loads of laundry to do. If I do any of these activities I run the risk of ruining my evening. So I am sitting here sulking about my inabilities. I could just as easily choose to rest languidly without guilt. I don't know why I do this. Martyrdom is so unattractive.
Ths is when having an imagination and some creativity come in handy. I am going to pretend to be someone else. This other person does not fret over uncompleted chores or weight gain. My imaginary persona does not let pain get her down or worry over the things she can't control. No, my pretend me is going to read a new novel and take some extra time picking out the best outfit. Pretend me has the "fuck Lupus" attitude down and is able to stop thinking when thoughts turn negative.
I cannot get below 15 mg. of prednisone without my whole life falling apart. I try to taper and end up with excruciating joint pain, crazy ass CNS symptoms and complete inertia. Tweaking my pain medication dosage messes with my head. Yet another irony of this illness is that the narcotics are less benign than the steroids and the chemo drugs yet, for me as an addict, I prefer more steroids to pain meds. This is a constant struggle. It is a cruel joke to be a recovering addict who requires pain medication to maintain some quality of life. I can never forget how it was and why I have to keep up this vigilance but I am not going to say it is easy.
My floor is covered in dog hair, garden needs weeded and I have about 14 loads of laundry to do. If I do any of these activities I run the risk of ruining my evening. So I am sitting here sulking about my inabilities. I could just as easily choose to rest languidly without guilt. I don't know why I do this. Martyrdom is so unattractive.
Ths is when having an imagination and some creativity come in handy. I am going to pretend to be someone else. This other person does not fret over uncompleted chores or weight gain. My imaginary persona does not let pain get her down or worry over the things she can't control. No, my pretend me is going to read a new novel and take some extra time picking out the best outfit. Pretend me has the "fuck Lupus" attitude down and is able to stop thinking when thoughts turn negative.
Monday, February 11, 2013
the visit
I was at the hospital today visiting my 90 year old Grandmother who is in there with the diagnosis Failure to Thrive. I take the meaning of that to be," I don't want to fucking live anymore". I am a coward. I have put off visiting her for months because she has dementia and possibly Alzheimer's, who the hell knows the difference, but I did not visit because I was afraid she would not remember me.
Everyone should have some person in their life who considers you perfect. My Grandparents are those people to me. No matter how I fuck up they consider me the Second Coming in the form of Grace Kelly. I tried to think of some modern day woman that everyone considers almost saintly and, sadly, I could not think of one person. Anyway, my Grandparents looked past my obvious flaws of bumbling alcoholic and drug addict, my getting knocked up prior to marriage,my not even attempting to finish college..should I go on? The point is no matter how I behaved they interpreted it as perfection!
Today my Grandmother is not the person she was. She shakes a lot and cries, she knew me but not the year or that she was even in the hospital. Little signs of life showed when she clearly wanted to feed herself when the aid was feeding her. I notice the nurses referring to her as "sweetie" or "honey", words you would use to address a small child. And it is no wonder when she barely speaks and can do so little for herself. My Grandmother is a very private person and I sat there hoping she was not aware of what was going on. In the span of my visit she was treated extremely well but I was chafing at the indignity of her current condition.
When I came home I sat in our rocking chair petting my cat and feeling the solace of holding this animal and hearing him purr, knowing this was his way of showing contentment. As I sat there I was thinking of what her doctor told me about dementia. If I understand her right the depression my Grandmother has been having and the dementia go hand in hand. She told me that my Grandmother's MRI showed changes in the brain caused by the dementia. This young and pretty doctor told me that my Grandmother is incapable of processing emotions like others do. What ends up happening is an affect that is totally flat. She no longer can feel the range of emotions that other people go through on an everyday basis: anger, excitement, happiness and contentedness. I told her that I thought that was terribly sad and she agreed. What is life if not emotion? How terrible it would be to only feel confusion, fear and sadness, since, ironically, these horrible emotions seem to somehow get through. I wonder if this young and vibrant doctor often wonders if her end will be similar to those of these elderly patients she cares for.
After I got in my car I plugged my Iphone in to my music. I suck at computers so even though I was miraculously able to download some songs they seem to come on randomly and never what I try to pick.The song that came on was, "Ain't No Sunshine When She's Gone". My only thought was, yep, how appropriate.
I know I have to accept this that this shell of a person is who she has become but I don't think this is God's will or any of that shit. I love my Grandmother and I cherish how she has always loved me. I am grateful she knew who I was today, maybe she will when I go back to see her again. I really hope so.
Everyone should have some person in their life who considers you perfect. My Grandparents are those people to me. No matter how I fuck up they consider me the Second Coming in the form of Grace Kelly. I tried to think of some modern day woman that everyone considers almost saintly and, sadly, I could not think of one person. Anyway, my Grandparents looked past my obvious flaws of bumbling alcoholic and drug addict, my getting knocked up prior to marriage,my not even attempting to finish college..should I go on? The point is no matter how I behaved they interpreted it as perfection!
Today my Grandmother is not the person she was. She shakes a lot and cries, she knew me but not the year or that she was even in the hospital. Little signs of life showed when she clearly wanted to feed herself when the aid was feeding her. I notice the nurses referring to her as "sweetie" or "honey", words you would use to address a small child. And it is no wonder when she barely speaks and can do so little for herself. My Grandmother is a very private person and I sat there hoping she was not aware of what was going on. In the span of my visit she was treated extremely well but I was chafing at the indignity of her current condition.
When I came home I sat in our rocking chair petting my cat and feeling the solace of holding this animal and hearing him purr, knowing this was his way of showing contentment. As I sat there I was thinking of what her doctor told me about dementia. If I understand her right the depression my Grandmother has been having and the dementia go hand in hand. She told me that my Grandmother's MRI showed changes in the brain caused by the dementia. This young and pretty doctor told me that my Grandmother is incapable of processing emotions like others do. What ends up happening is an affect that is totally flat. She no longer can feel the range of emotions that other people go through on an everyday basis: anger, excitement, happiness and contentedness. I told her that I thought that was terribly sad and she agreed. What is life if not emotion? How terrible it would be to only feel confusion, fear and sadness, since, ironically, these horrible emotions seem to somehow get through. I wonder if this young and vibrant doctor often wonders if her end will be similar to those of these elderly patients she cares for.
After I got in my car I plugged my Iphone in to my music. I suck at computers so even though I was miraculously able to download some songs they seem to come on randomly and never what I try to pick.The song that came on was, "Ain't No Sunshine When She's Gone". My only thought was, yep, how appropriate.
I know I have to accept this that this shell of a person is who she has become but I don't think this is God's will or any of that shit. I love my Grandmother and I cherish how she has always loved me. I am grateful she knew who I was today, maybe she will when I go back to see her again. I really hope so.
Subscribe to:
Posts (Atom)