What a whirlwind week! My husband was home on vacation this last week and he sure kept me busy. All my indulgences were under a microscope so it was nose to the grindstone! One of the things that did not quite make the list of mandatory was, I am sad to say, my writing. Clearly something that I still must make a priority, so hopefully the structure and organization I have been pining for will anchor it. But I was actually quite productive and got tons done and it was great to have him around for 9 days. I did work on the weekends and had class and a test on Thursday but we still got to hang out a lot. I am very lucky that I still really like the person I married after all these years. He got a chance to unwind and de-stress and get some priorities focused. Oh and sleep, the poor guy! I do believe he is truly finding his way. The living hell that is the impact of this disease on our lives all these years later is just now leaving the "building" stage and beginning to recede. This has been long and arduous!
But I digress... He did gain an actual appreciation for what it takes to run our lives, household and finances. He was quite helpful with things and at one point looked at me and said, "Wow, you really are busy!". Score that point, girl! The taxes were due. Boo hoo hoo hoo! But we have lived to see another year and are still standing strong. Building and coercing and caressing the life we want out of the life we have. But really at the end of the day what choice do you actually have? Lie down and take whatever comes your way? Allow the bullshit of life to define your experience and therefore your existence? Hell no! Fight back and don't let up until you see the mold you are casting for your life really start to take shape. Life is fragile and quick and only experienced fully by the takers. The risk-takers, the fame-takers, the chance-takers and the love-takers. The passionate!
I am very sad to say that my uncle, my father's brother, passed away last week. He was only 66. Early onset Alzheimer's with official COD still undetermined. It is all very sad. My dad is taking it pretty hard. The obituary is very dear and hopefully his wife and 7 children will provide him with an honorable and memorable farewell. Wow life is short. And it is interesting how the sum of a person boils down to what we leave behind. The relationships, the legacies, the familial bonds that transcend generations. The mark left on those known, society, and the world as a whole. What a person leaves behind is a true reflection of who we were as people on this earth, what we really believed in and felt. Good or bad, revered or alone, powerful or poor, its a tell of the heart of a person. Upon death all the pretense falls away and the memory that is left could quite possibly be the first real glimpse into the complex and true depth of that person's soul.
Thanks for joining,
Leah
Monday, April 19, 2010
Friday, April 9, 2010
Get It Together!
Last night was dissatisfying. I was in NO-productivity mode yesterday and did not get everything (or anything for that matter) done that I was supposed to, or at least usually do. I did lance the wound of the re-building phase of fibromyalgia by pouring that reality out onto my blog. Where hopefully I can leave it. And I had not written in a long time and felt I deserved the break and by the way, once again, had NO motivation yesterday... But my husband comes home and is not very happy with me. There is no dinner, he has had to buy lunch all week, the dog is still dirty and needs a haircut and was not even walked. The dishes are a mile high and I am in an orbit not even close to resembling his. Then he starts on me about going to the gym, and was critical of everything I did, standing over me and squawkin' about how I needed to watch my fingers when I was chopping (I told him if I did that I was likely to cut myself because I was not watching the knife!) and not let the dog out so far on his lead and pretty much everything I was doing was wrong or was eliciting a lecture on how to do it properly. Like I am some complete idiot. But it really got me thinking...
I have a deep and pervasive block when it comes to organizing the menial tasks of my everyday life so I can achieve what I want and do what I dream of. The minusha, the unconscious details that define the underlying current a person possesses. I have always had this block, fibromyalgia just revolutionized and redefined it. Does this relate back to a serious lack of discipline? If so then how do I have a college degree, 9 year marriage born from a solid 11 year relationship, an A in my Spanish class, a 9 year career in my field with an excellent reputation despite many health setbacks and a perfectly behaved dog? Those are core and important categories that I excell and continue to achieve in. I have set my standards high and I usually (always) meet them. But when it comes to doing yoga or putting on my makeup or making the bed every day I simply just don't have the drive. Desire. And once again, motivation.
Can I be thinking about this all wrong? Do I really need to step back and look at this from not only outside, but on top of and orbiting around the box as well? If I flip my thinking and expectations will I be amazed to find how my natural flow finds solid accomplishment? The tasks remain the same. But perhaps it is my expectation of how and when they are accomplished that need adjusting. What is my natural flow? Natural inclination? Let's see... Wake up and lie in bed. Start doing something like reading or blogging or studying to avoid getting out of bed. Really don't want to get in the shower or take a walk. I mean I really do but can't seem to convince myself to actually do it. The problem is that 9 months of the year it is over 100 degrees by 8 o'clock in the morning and that is precisely why I need to be up at 7 and back from my walk by 8. This requires I go to bed at 10 o'clock in the evening. That is another very complex roadblock entirely, for that is when this night-owl's energy kicks in. So then I usually take the dog out after he has pestered me for a good half-hour and we walk around the complex. We come back and I feed him, make coffee and, since I have already been up for a couple hours, feed myself. Then I get on the computer or watch TV. At some point in the day obligation takes over and I usually accomplish something. Some chore, some task, something needing to have been done for some time now. Now how do I meld that disorganized tangle of a lump into streamlined and productive accomplishment achieved by tapping into my natural lean? I guess that, my dear, is the million dollar question.
Thanks for joining,
Leah
I have a deep and pervasive block when it comes to organizing the menial tasks of my everyday life so I can achieve what I want and do what I dream of. The minusha, the unconscious details that define the underlying current a person possesses. I have always had this block, fibromyalgia just revolutionized and redefined it. Does this relate back to a serious lack of discipline? If so then how do I have a college degree, 9 year marriage born from a solid 11 year relationship, an A in my Spanish class, a 9 year career in my field with an excellent reputation despite many health setbacks and a perfectly behaved dog? Those are core and important categories that I excell and continue to achieve in. I have set my standards high and I usually (always) meet them. But when it comes to doing yoga or putting on my makeup or making the bed every day I simply just don't have the drive. Desire. And once again, motivation.
Can I be thinking about this all wrong? Do I really need to step back and look at this from not only outside, but on top of and orbiting around the box as well? If I flip my thinking and expectations will I be amazed to find how my natural flow finds solid accomplishment? The tasks remain the same. But perhaps it is my expectation of how and when they are accomplished that need adjusting. What is my natural flow? Natural inclination? Let's see... Wake up and lie in bed. Start doing something like reading or blogging or studying to avoid getting out of bed. Really don't want to get in the shower or take a walk. I mean I really do but can't seem to convince myself to actually do it. The problem is that 9 months of the year it is over 100 degrees by 8 o'clock in the morning and that is precisely why I need to be up at 7 and back from my walk by 8. This requires I go to bed at 10 o'clock in the evening. That is another very complex roadblock entirely, for that is when this night-owl's energy kicks in. So then I usually take the dog out after he has pestered me for a good half-hour and we walk around the complex. We come back and I feed him, make coffee and, since I have already been up for a couple hours, feed myself. Then I get on the computer or watch TV. At some point in the day obligation takes over and I usually accomplish something. Some chore, some task, something needing to have been done for some time now. Now how do I meld that disorganized tangle of a lump into streamlined and productive accomplishment achieved by tapping into my natural lean? I guess that, my dear, is the million dollar question.
Thanks for joining,
Leah
Thursday, April 8, 2010
Background: Medical Diagnosis And Beyond
I was still seeing the Fibro & Fatigue Center and they had finally un-covered the real truth behind what had happened to me. Here is the summary as I understand it today:
~Pancreatitis had caused an intense shock to my system that resulted in a suppressed immune function. That coupled with an undiagnosed sleep disorder that had been plaguing me for years left me defenseless. There may also be some genetic factor in all of this.
~I became infected with multiple viral and bacterial infections. As the infections began to take over my body I was susceptible to even more problems and a breakdown of my basic bodily functions. The worst virus, a newly discovered one called HHV-6, infected my central nervous system which in turn degraded all the systems in my body. This little bugger also lives inside the nucleus of each cell and is darn near impossible to rid yourself of. I also had EBV and CMV. The infections were at the latent level and did not register as a "new" infection so they did not show up with conventional testing. However, the "dormant" infection numbers were tested and turned out to be not so dormant, they were actually through the roof! There were also a slew of other problems. This is, in me, what is commonly known as Chronic Fatigue Syndrome (I have a theory that there are actually a number of illnesses that reside in this "diagnosis"). The day I saw the test results on paper that confirmed there was actually something wrong with me and had a doctor look at me and say "No wonder you have been so sick" was a very good day indeed!
~I lived with the undiagnosed virus for so long that it caused permanent nerve damage to my central nervous system and viola! Fibromyalgia here you are!
So is what I am left with even Fibromyalgia? Or is that just the name given to a complex set of symptoms originating from many different sources? That's what I think. I have done countless hours of research and through massive amounts of trial and error am truly one with my body. I can tell you when I am sick and where. I can tell you what it originates from and how to treat it (my husband says I am a hypochondriac). I consider diet, sleep, stress, hormones and exercise to be the 5 fingers of the whole of my being. When one is out of balance the others give way too. Oh the tale does not end here but I would like to get something else done today so ponder this: Our biology has in no way advanced as quickly as our technology and we are annihilating ourselves by ignoring the basic precepts of our humanity.
Thanks for joining,
Leah
~Pancreatitis had caused an intense shock to my system that resulted in a suppressed immune function. That coupled with an undiagnosed sleep disorder that had been plaguing me for years left me defenseless. There may also be some genetic factor in all of this.
~I became infected with multiple viral and bacterial infections. As the infections began to take over my body I was susceptible to even more problems and a breakdown of my basic bodily functions. The worst virus, a newly discovered one called HHV-6, infected my central nervous system which in turn degraded all the systems in my body. This little bugger also lives inside the nucleus of each cell and is darn near impossible to rid yourself of. I also had EBV and CMV. The infections were at the latent level and did not register as a "new" infection so they did not show up with conventional testing. However, the "dormant" infection numbers were tested and turned out to be not so dormant, they were actually through the roof! There were also a slew of other problems. This is, in me, what is commonly known as Chronic Fatigue Syndrome (I have a theory that there are actually a number of illnesses that reside in this "diagnosis"). The day I saw the test results on paper that confirmed there was actually something wrong with me and had a doctor look at me and say "No wonder you have been so sick" was a very good day indeed!
~I lived with the undiagnosed virus for so long that it caused permanent nerve damage to my central nervous system and viola! Fibromyalgia here you are!
Interpretation:
Genetic malfunction (hypertriglyceridemia) causes organ failure (pancreatitis) that zaps immune strength. Maybe something else genetic here (?) coupled with lifestyle malfunction (sleep disorder), which may also be genetic, leaves the immune system suppressed. Viral infection (HHV-6) invades central nervous system and disrupts healthy life cycle (Chronic Fatigue Syndrome). Untreated viral infection permanently damages central nervous system (Fibromyalgia).
So is what I am left with even Fibromyalgia? Or is that just the name given to a complex set of symptoms originating from many different sources? That's what I think. I have done countless hours of research and through massive amounts of trial and error am truly one with my body. I can tell you when I am sick and where. I can tell you what it originates from and how to treat it (my husband says I am a hypochondriac). I consider diet, sleep, stress, hormones and exercise to be the 5 fingers of the whole of my being. When one is out of balance the others give way too. Oh the tale does not end here but I would like to get something else done today so ponder this: Our biology has in no way advanced as quickly as our technology and we are annihilating ourselves by ignoring the basic precepts of our humanity.
Thanks for joining,
Leah
Background: How I Put Myself Back Together Again
The process of re-building my life was slow and fraught with much frustration and anger. After 7 months on disability I was able to return to work. During the time I was off I took a computer class to gain clerical skills, assuming I was never going to work retail again. In the beginning of the semester I would struggle to walk up the hill to class and by the end of it I was walking up to class with something close to ease. Recovery was very slow. I met with a job placement agency through the Department of Rehabilitation to inquire about a different type of job. Problem: I made too much money doing what I did and the types of jobs offered were unskilled and entry-level. No dice. But the deeper damage, damage that is still being inflicted until this very day, was emotional, and it was not just me. As I withdrew from the world, friends stopped calling because I was reluctant to make plans and when I did I usually (always) cancelled. My husband shifted into pure survival mode, a phase he is just now able to recognize and beginning to take leave of. He became very unhappy and dissatisfied with life. How can you blame him? His wife was ill with a very poor prognosis for recovery, our finances were in shambles and our sex and social lives were lackluster at best. Combine that with unhappiness with his job/company/career path, not living even remotely near where he wants to live and seeing no way to improve any of this and you have a fantastic recipe for some intense, long-term depression.
So slowly I rebuilt, inch-by-inch. One foot in front of the other. Through the concerted efforts of multiple doctors and medications, tons of support from my family and a few close friends that never wavered, I was able to take two steps forward with each step back and managed to squeak out a little progress. I went from doing anything being too much to able to control my activities and in turn regulate my symptoms. The learning curve was huge. I had to deconstruct myself, learn how to do nothing. The first thing I did when I went out on disability was set my DVR to record General Hospital, a daytime soap I was into in college. I knew a significant amount of TV watching was in my future, and this is when my love affair with the television began. She has been a good friend to me through these last few years. Kept me company, kept me in the know. She has babysat me, laughed with me, cried with me, distracted me and focused me. She is always willing to engage and ready to hang-out and displays endlessly amusing reels of footage.
While I was on disability I elected to avoid narcotics. I had a prescription for Percocet that I never filled and just kinda lived with the pain. I had been down that road and hated the feeling and feared dependency. I was so exhausted all the time I was really just lying around feeling miserable and sorry for myself, anyway. My anxiety was insane and my expectations for life being constantly challenged and adjusted. I was in a state of flux. What was going to happen to me? Was I ever going to get better? What was my life going to be about? It's like I had to become okay with watching the dishes and laundry and dust pile up around me, I had no choice and fighting it only made it worse. And all the while, living in the background, is the reality that no firm diagnosis was ever given. No real problem identified. Only this vague cluster of symptoms and a looming diagnosis of exclusion. So while my world is crumbling down all around me, floating around in the back (and often front) of my mind was the doubt that what I was going through was even actually real. It was horrible. Awful. Supremely difficult.
Thanks for joining,
Leah
So slowly I rebuilt, inch-by-inch. One foot in front of the other. Through the concerted efforts of multiple doctors and medications, tons of support from my family and a few close friends that never wavered, I was able to take two steps forward with each step back and managed to squeak out a little progress. I went from doing anything being too much to able to control my activities and in turn regulate my symptoms. The learning curve was huge. I had to deconstruct myself, learn how to do nothing. The first thing I did when I went out on disability was set my DVR to record General Hospital, a daytime soap I was into in college. I knew a significant amount of TV watching was in my future, and this is when my love affair with the television began. She has been a good friend to me through these last few years. Kept me company, kept me in the know. She has babysat me, laughed with me, cried with me, distracted me and focused me. She is always willing to engage and ready to hang-out and displays endlessly amusing reels of footage.
While I was on disability I elected to avoid narcotics. I had a prescription for Percocet that I never filled and just kinda lived with the pain. I had been down that road and hated the feeling and feared dependency. I was so exhausted all the time I was really just lying around feeling miserable and sorry for myself, anyway. My anxiety was insane and my expectations for life being constantly challenged and adjusted. I was in a state of flux. What was going to happen to me? Was I ever going to get better? What was my life going to be about? It's like I had to become okay with watching the dishes and laundry and dust pile up around me, I had no choice and fighting it only made it worse. And all the while, living in the background, is the reality that no firm diagnosis was ever given. No real problem identified. Only this vague cluster of symptoms and a looming diagnosis of exclusion. So while my world is crumbling down all around me, floating around in the back (and often front) of my mind was the doubt that what I was going through was even actually real. It was horrible. Awful. Supremely difficult.
Thanks for joining,
Leah
Oh Where Oh Where Has My Motivation Gone?
I cannot find any motivation today! I wanted to lay in bed all morning, did not want to take the dog out or get in the shower and really don't want to get ready, go to class or do anything. I have been very productive as of late and this is my usual pattern. Spurts of intense productivity followed by lulls of complacency and laziness. I have been spring cleaning, studying, exercising, sleeping, laundering, laying out, bill paying (the account transition is almost done!) and a slew of other boring but necessary housewifey things. My house has actually managed to stay clean and it feels really good. Foreign, but good! All that and a stomach bug and period cramps through my whole body have kept me really busy this last week. I have not done yoga in a few days and my back is REALLY stiff and sore and once again, I want to lay around and do nothing all day! The urge is so overwhelming. This pattern of behavior is what I will usually fall prey to. It is perhaps my biggest stumbling block in the transition to becoming a productive and contributing member of society from the excuse-laden sickie that I once was.
Easter was a bummer. I got sick. I got my period. I felt yucky. Church was nice but we went to the 2nd mass and the music was contemporary (which I do not like) and the singer chick was awful (Lord please forgive me!). The priest was young and not as inspiring as the married one. The married Catholic priest. Yes folks, you got that right, a Catholic priest is married! He was an Episcopal priest that was already married with children when he converted to Catholicism. He is one of only maybe 20 priests in the world that have special permission from the Pope to be married. His homily's are so rich and applicable. He draws from experiences that other priests are forbidden to know, and his message hits so much closer to home! Sadly Easter Sunday Mass was not even full, yet alone supporting multiple overflow rooms and fire-code breaking crowds in back. Attendance seems to be way down across the board, and I sure hope they start addressing that problem.
We spent the rest of the day watching TV and eating and laying around with me moaning about how bad I feel. But even with all my complaints about feeling crappy and getting irritated that my productivity spurt has ended, I look at the words describing my activity, pain level and point of view that are appearing on this screen and am amazed how far I have come. In the past there was no intense productivity spurts at all. As recently as October of 2009 Sundays consisted of me crying and freaking out because my husband wanted to go enjoy our day off together. I was feeling so awful from working Saturday that the concept of putting makeup on and leaving this house was more than I could possibly bear. Then he would get so sad and disappointed because he has stood by me through so much shit and just wants to enjoy his/our life a little on the 1 day he is not working 14 hours and droning in front of a computer screen. Then I would start feeling really guilty, like I was ruining his life, and freak out again. It's no wonder he is battling depression right now. Yep, this has been hard on both of us. It is amazing that we have made it this far, by the grace of God.
Thanks for joining,
Leah
Easter was a bummer. I got sick. I got my period. I felt yucky. Church was nice but we went to the 2nd mass and the music was contemporary (which I do not like) and the singer chick was awful (Lord please forgive me!). The priest was young and not as inspiring as the married one. The married Catholic priest. Yes folks, you got that right, a Catholic priest is married! He was an Episcopal priest that was already married with children when he converted to Catholicism. He is one of only maybe 20 priests in the world that have special permission from the Pope to be married. His homily's are so rich and applicable. He draws from experiences that other priests are forbidden to know, and his message hits so much closer to home! Sadly Easter Sunday Mass was not even full, yet alone supporting multiple overflow rooms and fire-code breaking crowds in back. Attendance seems to be way down across the board, and I sure hope they start addressing that problem.
We spent the rest of the day watching TV and eating and laying around with me moaning about how bad I feel. But even with all my complaints about feeling crappy and getting irritated that my productivity spurt has ended, I look at the words describing my activity, pain level and point of view that are appearing on this screen and am amazed how far I have come. In the past there was no intense productivity spurts at all. As recently as October of 2009 Sundays consisted of me crying and freaking out because my husband wanted to go enjoy our day off together. I was feeling so awful from working Saturday that the concept of putting makeup on and leaving this house was more than I could possibly bear. Then he would get so sad and disappointed because he has stood by me through so much shit and just wants to enjoy his/our life a little on the 1 day he is not working 14 hours and droning in front of a computer screen. Then I would start feeling really guilty, like I was ruining his life, and freak out again. It's no wonder he is battling depression right now. Yep, this has been hard on both of us. It is amazing that we have made it this far, by the grace of God.
Thanks for joining,
Leah
Friday, April 2, 2010
Jardin Comunidad
Yo estoy buscando informacione en la computadora sobre el jardin comunidad en mi universidad. Es muy dificil, no hay nada!
I am very excited. I am feeling truly optimistic and full of awakening purpose. I think taking Spanish has unlocked a very important turning point in my life. For so long I have been very unsettled. Purposeless. Unsure of what to do next. How much can I do? What are normal expectations? Taking this Spanish class was a scramble in the beginning. It made me get my shit together just enough to be successful with it. But it got the growing awakening of my dormant capabilities stirring, and I am finding myself in a place in life where I can choose what to do with my time. I am no longer a slave to disease. Oh to just feel those words! I guess today I feel that after a long and frustrating and painful battle the blocks are finally tumbling into place, right where they should be. Lord knows not where I want them. I never wanted any of this.
Blogging was phase 2 in rebuilding Leah. Getting on here everyday (more like every few) and clarifying my feeling and thoughts and perceptions. I feel lighter, like my load is easier to carry, since I can dispel some of it onto the keyboard and watch it manifest itself on the screen of my computer. I have always loved writing. When I was in therapy in my early-mid twenties one of the assignments that helped me most was called "morning pages". Free-write a minimum of 2 handwritten pages first thing in the morning before getting out of bed, no editing, stopping, or re-reading until through. And although this is a much different process the result is somewhat the same. Therapeutic. Cathartic. There was a sadness in me that I have such a passion and talent for writing and was doing absolutely nothing to cultivate or express it. And very symbolic of the habits of my life. So starting this blog has lifted that burden as well.
It even inspired stage 3 amd I finally emailed the garden club I see on my way to school to find out about joining and planting a plot. Vegetables, sustainable agriculture, composting. Now this is a world I really want to delve into! The overwhelming feeling I have is that I am actually becoming that interesting person I have wanted to be for so long. I am eveloping talents, interests and abilities that were deep within me, and turning them into something real, something tangable. And I have done yoga the last 3 out of 4 days and got an A on my Spanish test yesterday and had a really good hair day to boot!
Thanks for joining,
Leah
I am very excited. I am feeling truly optimistic and full of awakening purpose. I think taking Spanish has unlocked a very important turning point in my life. For so long I have been very unsettled. Purposeless. Unsure of what to do next. How much can I do? What are normal expectations? Taking this Spanish class was a scramble in the beginning. It made me get my shit together just enough to be successful with it. But it got the growing awakening of my dormant capabilities stirring, and I am finding myself in a place in life where I can choose what to do with my time. I am no longer a slave to disease. Oh to just feel those words! I guess today I feel that after a long and frustrating and painful battle the blocks are finally tumbling into place, right where they should be. Lord knows not where I want them. I never wanted any of this.
Blogging was phase 2 in rebuilding Leah. Getting on here everyday (more like every few) and clarifying my feeling and thoughts and perceptions. I feel lighter, like my load is easier to carry, since I can dispel some of it onto the keyboard and watch it manifest itself on the screen of my computer. I have always loved writing. When I was in therapy in my early-mid twenties one of the assignments that helped me most was called "morning pages". Free-write a minimum of 2 handwritten pages first thing in the morning before getting out of bed, no editing, stopping, or re-reading until through. And although this is a much different process the result is somewhat the same. Therapeutic. Cathartic. There was a sadness in me that I have such a passion and talent for writing and was doing absolutely nothing to cultivate or express it. And very symbolic of the habits of my life. So starting this blog has lifted that burden as well.
It even inspired stage 3 amd I finally emailed the garden club I see on my way to school to find out about joining and planting a plot. Vegetables, sustainable agriculture, composting. Now this is a world I really want to delve into! The overwhelming feeling I have is that I am actually becoming that interesting person I have wanted to be for so long. I am eveloping talents, interests and abilities that were deep within me, and turning them into something real, something tangable. And I have done yoga the last 3 out of 4 days and got an A on my Spanish test yesterday and had a really good hair day to boot!
Thanks for joining,
Leah
Subscribe to:
Posts (Atom)