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Monday, August 31, 2015

I Prefer it This Way

What is the truth?

A few years ago, I was talking to a friend who said to me, "<insert known guru's name here> says..." It was said after I had expressed a number of things that I was contemplating, trying to figure out, questioning. I knew of the "guru" and I knew the perceived belief, but it was a part of the package of things I was no longer sure I was willingly, without question, going to embrace.

My friend, however, was fairly adamant that my unwillingness to embrace the idea was a part of my "problem." She didn't say it that way, of course, but that idea was in the undercurrent of what she said. It kind of pissed me off. Granted the "guru" was known, and perceived to be successful, and I was perceived to be neither.

If we are struggling, we are supposed to listen to the successful ones, aren't we? It had to be my own ego and stubbornness getting in the way, right?

The problem was - and still is - I don't necessarily "buy" it. Another problem is that by current definitions, I have to be doing something wrong to be struggling as much as I do. I couldn't possibly be right, could I?

I truly don't know what to think. At the same time, I also truly don't think I am necessarily wrong, either. The feelings I have in this regard are just too strong. Plus. It really bothers me to think that we should take a "guru's" ideas and beliefs over ours, just because that person is perceived to be somehow wiser or more enlightened somehow.

That doesn't work for me. It might have at one time, but I am tired of trying to "fit" myself into the stuff of "shoulds." If it doesn't feel right, it doesn't feel right - no matter how "good" it may sound, no matter how much of a solution it may sound like it is. Odds are it sounds a lot better, and more profound,than it truly is. Odds are when it seems to fail, it wil be because I did not somehow do things right or enough or...Or, at least, that is what I will be led to believe.

Things may suck right now, but in some ways I am more at peace about some things than I was when I used to think there was some illusive answer or solution I was just not getting. And you know what? I prefer it this way.



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Up & Eating

I don't like eating at this time of night, but it seems that if I am awake, I need to, or else I will not sleep/get back to sleep. I wind up feeling so sick.

I wonder what the heck that is about, as it is a relatively new thing on the scene.

I had thought about something I wanted to write, but can't remember now what it was. This forgetful thing drives me crazy. I "should" be "used" to it by now, but I am so not. It is so freaking annoying to have thoughts just come and go like that.

Oh. I think it was about this trip I want to take. But that is a bit bigger than a midnight snack to talk about right now. When is gonna be the "right" time to talk about it? It really worries me that days go by and I have done essentially nothing except try to avoid major side effect issues, eat, and sleep.

Will a few more weeks be enough to recouperate so I can get on the road? I know I keep asking this question. I would stop, if I had any resemblance of an answer. 

I have to try to plan, as if I am going, whether I can pull it off, or not. But when I can barely pull off getting out of bed most days, a part of me just thinks I am freaking crazy to even consider it.

Right now I would just be happy to sleep. Tomorrow I have a few things I should do. I will be really happy if I can get them done. 

*fingers crossed*


Sunday, August 30, 2015

I can't help but wonder...

Lately there is a big move in the south to remove the Confederate flag, as well as statues of significant members of the Confederacy. I am sure many think it should have happened a long time ago.

I, on the other hand, wonder if they were to stay, if they could be a reminder of a "place" to stay away from. A problem with that idea, though, exists in the fact that the meaning of some of those things already varies, depending on who you talk to.

Just to be clear, I am not advocating for one side, or the other. In some ways, I feel a bit too far removed from those emotionally charged by their significance. I am not sure it is "my" choice to make, and if it was, my question above is one I would certainly be asking of those asking me to make that decision.

I am not always sure that removing the things that make us uncomfortable is a good idea. We already look the other way many times when it might be better for us as a whole if we were willing to look and engage.

Not to say I am "right." It was just a thought that crossed my mind...I often think I may "know" something, only to be shown something that expands my mind's perspective. Sometimes the fact that I did not see what is shown me is sometimes disappointing. How could I not have seen that?

I guess that is where having an open mind can come in handy. It allows me to see things as others might, and makes me more empathic. However, being willing to be wrong is certainly a pre-requisite to getting "there."  Admittedly, there are likely to be times I am unwilling to see things any other way than I do, and that can certainly cause a problem, or two, or ten.

We human beings are sumthin' else. You ever wonder about how amazing it is that we have anything we do? We can create so many issues for ourselves and each other interacting with our contrasting ideas and perspectives. At the same time, we apparently can also manage to figure a few things out along the way. 

It certainly does make me wonder...

Interesting Tidbit

Occasionally I Google myself. I have found a few interesting things that way. I have a couple of quotes that people really seem to like. They probably have no idea who this "Elizabeth Alraune" is, but it is pretty awesome to be quoted among names many would recognize.

Today I discovered there are 3 authors that I do not know who have quoted me. In their books, are my words. That seems a bit on the cool side to me.


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Enough.

When I "found" my tears yesterday, it was when, out of no where, I yelled, "ENOUGH!"

I started to cry, as I spoke to "anyone" who might be listening: God, angels, guides...I told them I had had enough of this. It needed to be done. I was more than happy to be in the world, and do things, but there was no way I could as things are. I can't function. There are days I can barely move. I just can't.

"This" needs to end, and I made it clear that I did NOT mean I wanted my life to end. I also made it clear that while others would make seem there was a "certain" way of asking for help, that I do not believe that. In fact, I refuse to believe that if I do not get "help," I am not doing it the right way. That just does not seem right to me. However, if they wanted me to ask for help, then here I was - pleading for it.

My tears were so hot as they streamed down my face and dripped into my lap. Instead of crying hysterically, it was a somber cry. It was a deep cry from my soul. 

I also wondered out loud if, as some might suggest, I knew this would be my life before I came here. If so, OK, I agreed to it. I have learned a lot, and would continue to learn more if things continued to deteriorate, but STILL, ENOUGH.

Enough already. Please. 

I am so, so tired.

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Saturday, August 29, 2015

Just...

Just found all those tears that were lurking before.

Shuffling

You know how sometimes you can "play" a situation for effect? How sometimes you may look or sound worse than perhaps you are to get attention or sympathy?

There are times I wonder if unconsciously I could be doing that when my friend is around. I feel like I am moving so insanely slowly. I am bent over. I am barely able to function.

But, here's the thing: I do that even when I am alone. (I also have times there is no way in hell I could move that slowly, even if I wanted to. I wouldn't have the patience).

Just a few minutes ago I was hobbling up the steps. I had shuffled downstairs to feed my friend's cat, and I was walking funny, slowly, breathlessly, and shuffling.

As I came back up, I tried to hold on to the railing, but it hurt my hands, given whatever is going on with them. (Still hoping they do not get any worse. Saw some pictures of major peeling and blistering. How would I function?)

So my hands could not help me pull myself up, or support my weak legs. I went even more slowly than usual. And then, I felt something in my right knee. A cramp? Whatever it was, it weakened my right leg, and slowed me down, even more.

What if I couldn't get up the steps? My phone was upstairs. 

I had a moment I could have lost it. I felt very close. But it was there, and then it was gone.

Moments like these scare the shit out of me. It is possible I will soon have to find a place to live, and I wonder if I can make it on my own. A place without steps would certainly be a big plus. But, even still, I can't do anything outside of the house. If I needed medicine, I wouldn't be able to go get it. The same with food, or any other necessity.

What is affecting my hands could potentially affect my feet. I can't take care of myself, if I can't use my hands or feet. It is already hard enough, as it is. At least if someone is married, or has nearby supportive family or friends, they can get help in a time like that. I do not have that.

I am feeling emotional, but the tears haven't come. Am I holding back? It is like they are there, but somehow not.

I am feeling gassy, and my stomach is miserable. I know I need to eat something, but very little feels appetizing. I decided on a homemade pizza, and the crust is currently defrosting. I should look forward to eating it, but the fact is it feels much more functional at the moment.

I also need to put it together. I would love some homemade pesto with it, but that just ain't gonna happen, short of some incredible burst of energy. I will be lucky enough to have it at all. But the defrosting takes a bit, so it will be a while before I get to that part.

I have tried to have ready-made food for myself, but even "ready-made" isn't instantaneous. It is so hard to not know when I can stomach eating, only to find I need to eat ASAP. I usually wind up dealing with the latter scenario, as eating when I don't want to just doesn't work.

Sometimes I wonder why I tell you these things. I am guessing there are many who read things like this, but couldn't care less. For some it may be TMI. 

Maybe I just hope somewhere out there there is someone who will not only care, but care enough to do something to help. Sad to say, a part of me thinks I am just crying out in the dark.

Another part might just be trying to be helpful, trying to explain the kinds of stuff someone deals with. That part of me is pretty persistent, although another part of me can't help but wonder why I even bother.

In the end, I am sitting here, alone, in pain, tired, and miserable. And most who will read this are out in the world, living their lives, blissfully unaware of what that person, in that house, on the second floor is dealing with. And, quite frankly, I suspect that is probably the way they like it.

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Friday, August 28, 2015

I Did Not Want to Do It

I did not want a third cycle of this chemo. It has kicked my butt in a big way. I did not want more. I wanted to stop. 

But I "compromised." I decided to do a third cycle with the intention of getting off, and seeking to get on the road again.

But I am having issues. The side effects have me weak, and bent over. My stomach hurts when I eat, and hurts worse when I don't. Sleep has been sporadic and difficult. I am having a hell of a cough that is also sporadic, so I do not take anything - unless it won't stop.

My hands are now red-ish, and slightly itchy. A look online tells me that "my" chemo can have this potentially horrid side effect. Hoping it gets no worse than it is. Some get to the point they can't use their hands. Say what?! I would be in big trouble if things got that bad.

I am also potentially a month away from a trip. If I am gonna go, I got stuff that has got to get done. That is so easily said. But when I can barely move or stand, and haven't left the house, that is more than a bit problematic.

This trip can be only a shadow of the last one - if even that. I have considered going up and down the east coast in 2 hour increments. 

The last trip my average was 4 hours a day. There is no way I could see doing that now. Fact is, I am counting on being away from chemo to be enough to allow me the little bit I am wanting to plan.

I am also hoping I have the desire and energy to be out in the world, and hope not to find myself crawling from hotel bed to hotel bed. Outside of not making the trip itself, this is my greatest fear/concern at the moment.

The last trip was also wearing. Most nights I was somewhere new, which meant having to always figure out where I was spending the night. It may not seem like a big deal, but it is not the easiest thing to do if you want safe and clean and have budgetary concerns. I sometimes agonized, and other times just said, "what the hell?" The anguish and energy was just not worth it.

I had thought about going to one place, and just settling for a month. That idea sounded good, at first, but I could just not commit. Funny thing is it is sounding good to me again.

But maybe it isn't a good idea because maybe I will find myself never leaving there, the same way I never leave here. And that would seriously suck. Maybe having to get up and go will be a good thing for me, as long as I am not miserable in the process. 

I have ideas for this trip - at least one - that I'd like to share with you. I haven't because it is still cooking. Maybe I should start to talk about it, though, just to see what, if anything, may come of it.

I guess the fact that the trip feels quasi uncertain may also come into play. That, and the energy it would take to talk about, plan, and develop my idea which I just do not have at the moment.

As is all too usual, I am laying in bed as I write, and this is where I have spent the better part of the day. Maybe that has a lot to do with why I can't sleep here. This is where I am too busy living most of my life.

Oddly, perhaps, I am feeling pretty sleepy. I think I would appreciate these times more if I did not feel hijacked by them, or wonder if I give in if it will affect my ability to sleep tonight.

For someone who used to love late nights, I am now miserable. There is not much I can usually do, and I usually wind up feeling pretty sick, unable to do anything about it. I am very grateful in the morning when it is clear that sleep finally decided to show up. 

UGH.

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Thursday, August 27, 2015

When it's all you know...

I get annoyed when I see some things. I am not totally sure why, but I have a suspicion about what might be a part of it. Although I am still trying to put it into words as I write.

I realize titles aren't everything, but the thing is, I think, for some - they are. If a title says you can do something with ease and grace and look like a 10 doing it, well then that is all one might think they need to know.

But in the process of titling things in this "upbeat" and "empowering" way, I suspect there may be times it doesn't exactly support us. There may be times it actually can set us up to fail. If you say I should be able to have ease, and grace, and look like a 10, but I don't - is there something wrong with me?

Some might argue you gotta give people what they think they want to get 'em in the door, but once they are there, you can give 'em anything you like. It might sound good to you, but if you are on the receiving side of this potentially painted "good for you" deception, you might not be so happy about it. And, even if it is on target to the title, you still might find yourself momentarily inspired, but ultimately disappointed.

Over the years I have gone to many different types of seminars and read countless numbers of books. There was a lot that sounded good, and had me plop down my money.

But the thing is, there was often very little that had much bearing on "reality." What they would do would be to draw me in on the unhappiness or discontent of my reality, only to tell me how I needed to make a new one. If I came away and was unsuccessful in doing that, it was MY fault, or my unconscious' fault. 

Here is the thing, though: how much control and say do we truly have about our life, and how it looks? Some - especially those trying to sell us something - will tell us we have a lot.

I saw a video today from someone who doesn't believe in God, at least not the one we have been taught about, and taught to serve by religions. If there turned out to be a God when he dies, he wants nothing to do with "Him." 

To this man, how could God create a world with so many illnesses and issues? If there is a God, what kind of God creates the kind of messy world we live in?

I raise this not as a point of discussion/debate, but rather as interesting perspective that I had not heard before.  For many, God is an absolute.

This "thing" that is in no way seen or experienced in an absolute and tangible and repeatedly provable way is considered absolute by many. These many have their ways of dealing with the uncertainties with catch phrases of certainty. Some are even saying them as they are drowning.

Perhaps that works for them. In the same way, perhaps it works for those who believe that somehow, some way, they can control their life and destiny. Yesterday and the day before and today are not necessarily going my way, but I CAN change it.

For some, a change comes. For some a  "miracle." Healing. For others, disappointment.

What is the difference? Is one more deserving than the other? One a stronger believer? These are the kinds of things we conjure up to try to explain the unexplainable.

Certainly it would seem that a "truth-telling" title could be less enticing/seducing than one that seems to indicate you can "have it all." Your life might be miserable enough, why would you want to hear something that doesn't tell you you can fix it?

At the same time, we allow ourselves to entertain the idea that we "weren't ready to hear something before," and that is why maybe we need the same message repeatedly stamped on our head. We give ourselves reasons for previous perceptions of failure. 

What if things just are what they are? What if they are just how they are "supposed" to be? What if nothing about you needs to be fixed, tweaked, or transformed? At least IN THIS MOMENT. 

And, what if, the moment a change comes, then things shift from one "supposed to be" to a different one? And, what if, the moments of change that are "supposed" to happen come not from a form of coercion - as in you "have" to make this happen - but rather from what naturally flows from what is?

It might sound as though I am saying it is "easy," but I am not. I am thinking about bodies of water. They don't always have smooth or easy paths, and sometimes the water dries up.

Short of human interference, what does/doesn't happen does or doesn't happen until it does or doesn't happen. What if, on some level, that is our life? And what if there are times we get caught up in someone else's ideas, plans, thoughts and try to go somewhere? Maybe we won't be as successful as we might have thought we'd be. Maybe that is only our path until we realize that it isn't. 

There are all kinds of maybes and possiblys and questions to life which is probably why we have our moments of desperation for the illusion of certainty. The fact is, I don't blame us one bit for wanting that. Sometimes its the illusion of certainty that can propel us forward.

I think I'd feel better about our "deceptions" if, in the end, they truly seemed to serve us. The thing is, I think the deceptions can more often serve the rooz that we think life is, rather than our lives themselves. 

It often feels to me like we are swimming on the surface of our lives, thinking we are doing stuff because we are busy. Thinking we are having an impact, when we may barely be making a dent. Often focused on things that don't really matter, thinking they do.

Once in a while we get a wake-up call and everything can be altered in moments, and potentially forever. The wake-up call calls BS. It sees things a lot more clearly. A travesty is no longer a broken nail.

Of course, that is an extreme statement, but for someone who has no real concept of a travesty, likely many things will be miscategorized there. There is something to be said for all things being relative. And fortunate is the person who can put something in the travesty column that one who has truly been hit by something catastrophic would only be amazed at - and, perhaps wish for the innocence of experience that likely often comes along with it. 

I have now come back to this entry a few times. Not quite sure where to end it. As with some of my posts, it feels like I went all over the road. And I probably did.

I guess I just wish we were more able to see things in a way that does more than have the illusion of serving us/making a difference. At the same time, I can (to some degree) understand why things often are as they are. It is just really hard once the blinders come off, the shades are raised, and you can't un-see things. I miss being able to be in that place. At the same time, I DO appreciate what the light offers. I probably come off sounding harsh or frustrated or judgmental when it comes to some things. If I do, it is because it is very difficult to see the world with much different eyes than many around you. And it's not like I chose to be here, exactly. I kinda came kicking and screaming. The illusion often doesn't really work, but when it's all you know...

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Wednesday, August 26, 2015

Reflections?

I saw someone posted that she needed help to move. She said that she wasn't getting a response from the people she had asked for help, and wondered if the fact that people weren't helping was some indication of who she is and how she has been.

I know there are those who believe that kind of thing. I know I question if it is possible. But I also think about how, while not perfect by a long shot, I HAVE helped others. I HAVE been there for them. I have even been acknowledged more than once for being who and how I am.

I also know that there have been many times I have been left wanting/hanging in my time of need. And there have been times it has been by the very ones I have helped a time, or two, more.

This is not to say that life is meant to be lived tit for tat. Sometimes we get what we need in unexpected places, and from unexpected people. And there are times we also get nuthin' - especially when we need it most.

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Tuesday, August 25, 2015

Spelling Things Out

I just saw a video from Dixie that says you should focus on conversations, not the dishes. It is selling paper plates. 

It was right after I saw this graphic:
(Found on Sustainablog.com If I am not allowed to use this image this way, and you own it, please just let me know).


The Dixie ad is simplistic. Most people will not think about the above graphic, and it is likely more out of pure ignorance to the details than anything else. 

At least the first time.

The question then becomes does the "convenience" story win out? After all, the convenience is what draws your attention, especially if nothing else does.

The details, however, are inconvenient, uncomfortable, ugly, and most people will not want to focus on them. They'd rather see the neat other picture. 

It is no wonder few things get spelled out. It is no wonder people do not appreciate the awareness. It is no wonder a lot of things.

But our ignorance often comes with a price. I guess as long as we think we can afford to pay it, we think we are Ok.

The thing is, though, many things have a tipping point, and there are times we may not know just how close we are to the place where we will find ourselves hurt.

Am I suggesting we shun convenience? I'd like to. But there are times it really is just a necessary thing. I guess it would be at least a starting point if we could have a few less necessary times than we think we need.

Anything done or undone has to start somewhere.

And, for the record, I recognize this is a rather simplistic "conversation." I am Ok with that. If it gives a person a reason to pause for a moment, that works for me.

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Monday, August 24, 2015

I Fucking Hate Chemo

Last night was a very bad night. It feels like things are getting worse, instead of better. I have been so freaking miserable.

I decided to post something on Facebook. That way, maybe I would be the recipient of some good thoughts and   energies. I figured it certainly could not hurt.

What I wrote surprised me:

If there is anyone out there that sees this and cares, I am having a horrid night. I am in so much pain. I can't get comfortable. Side effects are many, and getting worse. I have been crying, unable to do anything else. I am so weak. Have chills. Cough. Hack my brains out, actually. All I want to do is sleep. All I want to do is disappear to the world, even if for just a little while. I hate chemo. I hate the toll it takes on me. I hate what it does to me, and what it steals from me. Thank you for listening and any good thoughts you might send my way.

The surprise came in talking about chemo. I have tried from the beginning to see chemo as a "friend," an "ally." I have tried to see it as a good thing. I stay away from the idea that it is a poison, and other horrid things people say about it. (Ironically, the ones who often say the most about it are usually those who have never had to make the choices and decisions I have had to make).

I suddenly was saying I HATE chemo. I guess my true feelings came out. In thinking about it, it makes sense that I would hate it. It would make a lot of sense.

I fucking hate chemo.


Sunday, August 23, 2015

I'm Sorry...

Is this some kind of bad joke?

This was in a fortune cookie I just ate. 

I realize I could look at it in a way that could empower somehow, but given my situation, it just feels like an unpleasant joke.

I am open to the interpretation shifting. After all, it doesn't say it in the present tense. Things CAN change, right? They CAN get better, right? Miracles DO happen, don't they?

My miracle might have gotten lost in the mail. I just have to hope the miracle WILL do its thing wherever it might seem to land. 

Trying to be optimistic in a sea of corpses is not the easiest thing to do. I know what I said probably sounds horrible. 

Here is why I said it: I am acutely aware of those who deal with cancer with a smile on their face. They are optimistic. They are gonna beat it. All is right with the world. All will be right with the world. They get a recurrence? They're strong. They're positive. They're smiling. They are gonna beat it.

You see it on their blogs, their videos, in person. YOU even believe them. And, then, you find out - s/he died.

*BOOM*

For a long time I have felt I did not want to be a part of those ranks. Even perceived positivity did not save these people's lives. They still left this world.

I really do not know how to rectify these feelings. And so I get to "enjoy" them continually challenging me.  


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There are times...

There are times I think I'd just be doing everyone a favor by leaving this place. For some I seem to be more of a second-thought or afterthought. Others just don't talk to me. 

Of course this isn't everyone, and those who hear the tunes I sing know them by heart, and don't necessarily want to hear them again. I understand that, however I don't have the same "luxury" of leaving it behind, or putting it to the side, or ignoring it. I am LIVING it.

Earlier today I was talking to someone who was trying to help me by telling me that my life currently is "fighting cancer" as a way of telling me that I DO have a life. While I sort of understand what they were getting at, it really did not help.

As an example, a few hours ago I was laying in bed, getting hungry. The only thing I could think of without getting nauseous was Chinese Food. 

To get it, however, involved a process so many think nothing of. First, I had to move. Secondly, I had to get out of bed. Third, I had to make my way to the menu downstairs, and find my friend to see if he'd receive the delivery, and then I'd have to place the order. Then I would come back up to bed until it arrived, to return to go eat.

What I did not anticipate, nor plan on, was how much eating was gonna wipe me out. It was like I had done some extraordinary work. I could barely talk or stand.

I am back in bed, and even though I had hoped to feel better, I now feel sick in a different way.

Sadly, this is not much unlike other days are for me. This is all too typical, although perhaps a shade worse. Some days it is amazing I can function at all.

This friend, who is currently unhappy in his job, tells me I am not the "only" one with no life. While I am not wanting to get into a pissing contest with anyone, there is a difference between his no life and mine. There are actually a few differences:

1. He chose his current circumstances. I did not choose cancer.

2. He may have "no life," but at least he is healthy, and isn't intolerably sick and emotional most of the time.

3. He can change his circumstances. I can't just "change" to a non-cancer person.

4. His situation has an end in sight, potentially with awesome upside, making it all (hopefully) worth it. I see no end, and the only end docs see is likely to be death. 

I understand he is miserable right now. In his world there is a big suckfest going on. I get it. At the same time, I am dealing with "no life" with an appendage that is a huge, blinking, neon sign that says, "cancer." It is a whole other dimension that is unfathomable to most - so much so, it is often discarded without much thought (but not necessarily maliciously or purposefully) because what is similar is being focused on.

It is an impossible situation sometimes for me. I want people to appreciate what I am dealing with, but it often falls short. And when it falls short, I run the risk of a pissing match, or the other person feeling like I am disregarding their situation.

I am just desperate for people to understand just how desperate and miserable I sometimes am. But I am not sure they ever will understand. I am not sure they can. They may be able to come to the neighborhood, but I really am not sure just how close they can get to where I actually stand.

And it sucks. It sucks because I often feel that lack of understanding has me feel like a burden. It has me feel like a lot of unwelcome and unwanted things.

Do I blame anyone if they feel that way? Not one bit. But what am I supposed to do? How do I deal with the stuff I can't seem to detach myself from? How do I live with the stuff that so many have grown tired of, or don't know how to deal with - and so, don't?

Someone I know has dealt with major health issues for 20 years. In between horrendous moments have been some crappy ones. There has been good, but there hasn't been much life lived in between. She said she is not sure why she is still here.

As she spoke, I knew a lot of what she has felt. The biggest, most obvious, difference is the fact that it has "only" been 3+ years for me. How has she done it? I have considered being willing to give up and give in more times than I can count at this point.

I wrote the above earlier...

It is now late, and I am laying in bed, and am miserable and in pain. Guessing it may be something of a gas issue. Hoping that is "all" it is.

As I writhed in pain, I started to cry. I can't take this. The chemo is making me miserable in so many ways. And it is not "just" miserable. Miserable wouldn't be so bad compared to the ever present awful, sick feeling I have. And when pain jumps on the bandwagon it just sends me over the freaking edge.

And, of course, it is the middle of the night, and I am alone, and sad and scared and a myriad of emotions and feelings and a huge pot of stuff that I have to deal with alone. If only there was someone here to hold me and make all of this just go away for even a little while.

Times like this really push me to the fragile edge of this life.











The Prayer Thing

Today I saw someone asking for prayers for firefighters and families out west. It got me thinking about those who are not in the immediate vicinity. It could very well be that prayer is the most immediate and practical thing they could offer.

They might be able to do more, though, depending on the circumstances, and options available. Maybe the families need money for food or clothing or for a place to stay. Prayer is good, but the money might be better. At least more immediate and practical.

It feels to me that prayer offered is sometimes a cop-out. Instead of it being an "and," it becomes an "it's all I got." 

Is it REALLY all you got? Maybe there are times it is. But my guess there are many more times you could do more, be more, give more.

People say "trust in prayer." If everyone is praying - but not actively doing anything else - who is going to do that "something" else?

I sometimes feel like the "prayer thing" is pushing off responsibility for another/a situation onto another. What it is in all practicality is prayer for someone else to take care of it.

I got to thinking that perhaps prayer is categorized in the wrong way. Instead of it being the automatic, first response, it should be an AND response, and ONLY used in a solo way if, and only IF, it is truly the only thing you feel capable of in that situation.

People can help others more. They have to want to, though, and I think that can be a huge obstacle to overcome. You can do $1, and it can matter. You can forgo a Starbucks, and give $5 or more to someone who can't afford a roof over their head. 

Even if prayer is a currency of some sort, people cannot trade it for the necessities. It can't pay the electric bill. It doesn't put food in their stomach. It doesn't pay their medical bills. 

People need the results of prayer, and if you are unwilling to help a stranger get what they tangibly need, what makes you think someone else will? And if you think others will, how about helping to find them?

There are many people who have told me they appreciate prayer. The thing is, though, that when they have found themselves up against "it" and struggling, it is one of the LAST things they want to hear - regardless of how well-intentioned. So, in case you think this only about me, please - think again.

In a time of crisis, prayer will likely be welcome by most. But what might also be appreciated, and perhaps even in a bigger way, is tangible help. 

Never say you can't help. There is always something you could do. And if you have $1, a person without it will likely think it helpful. 

You may not understand. But you don't have to, and hopefully you never will find yourself in circumstances that have you learn the hard way all of the things that all too many face, and all too few understand.

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Saturday, August 22, 2015

A First

There is something being cooked downstairs that is radiating up to my room. Even with the fan on, and the window open, it is a strong odor.

"Normally" I would probably think it smells good. Most cooking to me does. 

The problem is this apparently is not a "normally" moment. The odor is making me so sick to my stomach.

I even asked my friend to please open a door, a window, turn the fan on, something, anything, in the hope that it would be less dense. Even with whatever he did, I still smell it, so I hate to think how it would be with none of that.

This reaction surprises me. I have not once had such a strong reaction to the scent of food since being on chemo. I may not want to eat. I may have only a little appetite. I may even feel somewhat nauseous, but it was never before connected to the scent of cooking food.

I have heard of odors affecting some, but until today, a little while ago, it was only second-hand knowledge. (Add it to my checklist of cancer/chemo experiences. Oh goody! The list just continues to grow.) 

I have no idea if it is just a momentary/coincidental thing, or if it might be the scent of a particular spice encouraging it. And that sucks, as I have no way of knowing how to mitigate a second occurrence.



With any luck, maybe I will get lucky, and this will just be an awful one time thing. I really hope I am lucky. I hate the way I feel. Oddly, not only am I nauseous, but my stomach is hurting in a way it didn't before all of this. Not sure how that can happen, or if it is connected, but DANG.

I just want my stomach to be OK. I have been trying to be as OK as possible, even eating when I really don't want to. 

But there seems there was a greater reason other than nausea, and just not wanting to eat, for me to refrain from eating these last few months. It seems my stomach is just not particularly happy with food. The problem lately, though, is that it is also not particularly making me happy without.

I cannot seem to win. And I am very much at a loss.

If I at least knew "x" was causing the problem, maybe I could either try to address it, or perhaps just resign myself that for several days each month I will barely eat.

It is the chemo causing issues. It "attacks" fast growing/reproducing cells, which happen to include the digestive tract. 

But what problem is it causing? Is it constipation making me feel this way? Something else? A combination of somethings?  And then there are other issues I seem to be having. I am wondering how well my food is digesting.

I am still dropping bits of weight, but still hover around the 10# mark since this all started. Since I am eating in bits, and randomly, it would seem that over all I am not eating as well as perhaps I "should."

I still am OK about the weight loss, but not so OK with how it is being precipitated. So much of our mind and body's well-being is in our digestive system. It is no wonder on every freaking level I feel like crap.

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You Might be in for a Surprise

Someone I know is facing some significant, serious news. She is greatly challenged in many ways, just like I am.
She is also questioning a lot of things, like God, and her faith.

There is so much that she is facing that I can identify with. There is so much that comes up from others that I can also appreciate.

The other day a very well-meaning friend wrote her to ask what she was grateful for. Anyone who has ever dealt with a major crisis only to hear that from someone who does not truly understand knows this is a less than ideal approach/question.

For starters, there can be many things one can be grateful for, but in the midst of the immediacy of the things that are happening in the moment that suck, it is difficult, if not impossible, for a well-meaning perspective shift through a question like this.

Imagine you have spent 30 plus years of your life walking, but then had great difficulty doing what came naturally all that time. Sure you could be grateful you still had your legs, that you had the use of your arms, that you were "alive" (a "good," and frequent point presented by many), that you had someone who could help you, and more...

You could be grateful for all those things, but it doesn't change the fact that your legs don't do what they once did, how they once did. That also means that you can't do what you once did, how you once did.

Being grateful has nothing to do with what is lacking. In some ways, I think it is an attempt at a coping mechanism or a fix it. Often those things try to give us other things to focus on. And if we fail to focus on the "better" thing, then that is why we are so miserable. It is our fault. After all, everyone knows that focus is "everything." Everyone knows it is the Magic Wand. Right?

I do not ever know what "the" answer is when it comes to this stuff. I imagine some good can come out of a perspective shift, but I am not sure it comes from an outsider's well-meaning attempts to artificially stimulate that shift. 

I also believe that on some level there is a portion of the answer that involves facing a situation AS IT IS ... AS SUCKY AS IT IS.

What is the first thing we do when someone disagrees with us about someone or something? We are likely to dig in, defending what we believe. We don't suddenly go, "Oh, yes. You are so right. I was so wrong. Everything changes now. Thank you for the enlightenment." 

It doesn't work that way. If an alternative perspective is likely to work, it will
probably be because you were willing to see things first as another sees them. And then, and perhaps only then, might you be able to have them see the things the way you do.

But. The "funny" thing is that if you actually took the time and effort to understand where another stands, and why, you might be less inclined to believe what you do.

There are no easy answers or solutions to much of the crap that shows up in life, but that doesn't doesn't stop us from trying to treat the equivalent of gaping wounds with band-aids - at least, often when it comes to other people.

When it comes to us, we might need our scratch to be treated like a gaping wound. And the fact is, it just might be a lot more than we think it is, or what we think we see (and that goes for anyone, although we are often less likely to see it in regard to another).

A person's experience is valid to them. And I think we need to stop invalidating others, in some part (at least at times), to make ourselves feel better. 

When my friend told me about the "grateful" email, I asked her if she told her  friend, "Did you tell her you were grateful you could tell her to f*ck off?"

Of course, she'd never do that, and of course, I did not mean it. However, she totally knew I was with her reaction, given mine - at least, after she knew I wasn't being serious.

Those dealing with things often have to be so polite and tactful to many well-meaning people who haven't been taught how ineffective - and sometimes painful - many things said are. Unfortunately the alternatives seem to suck that much more. As sucky as they are though, I suspect they are closer to an effective way of dealing with something than the things we have been taught/think we know. 

Despite what others might believe, I suspect allowing for what is also allows one to move on a bit quicker - and maybe even a lot quicker - than trying to force oneself to go against the tide. At least, that has been my experience.

Don't know if you should believe me? Consider trying it out. If you are often inclined to "help" others by negating their experience ("stay positive!") stop doing it - and see what happens. You might be in for a surprise.

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Friday, August 21, 2015

So...

So tired of feeling crappy.

So tired of being tired of feeling crappy.

So tired of no life.

So tired of not doing much of anything.

So tired of being lethargic.

So tired of just existing.

So tired of not being able to sleep.

So tired of my stomach hurting.

So tired of not being able to move.

So tired of the cloud over me. The heavy, dark cloud.

So tired of not caring/barely caring about anything.

So tired of having to consider every little move.

So tired of wanting something, or to do something, only for it to happen days later - if at all.

So tired of struggling.

So tired of being alone.

So tired of chemo.

So tired of dealing with cancer.

So tired of my digestive system struggling to work.

So tired of being worried about how I am going to take care of myself.

So tired of nothing in my life being certain, or even being able to exist with the illusion that it is.

So tired of being ignored or misunderstood.

So tired of begging for help.

So tired of needing help.

So tired of all too often being someone I haven't known myself to be, fearful on some level I am becoming this person.

So tired of not being able to be the myself I have known myself to be.

So tired of being depressed.

So tired of crying.

So tired of coughing.

So tired of being judged because I ask for help.

So tired of my brain taking frequent pauses in which I lose words and my train of thought.

So tired of people trying to tell me what is possible when they have no clue just how impossible a lot of what I am dealing with is.

So tired of being told what to think, how to think, what to take, what to eat.

So tired of being a target for multi-level marketers and their "miracle" products. 

So very tired.

On the other hand, very much appreciating the breeze coming through my window right now. 

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Thursday, August 20, 2015

Good News?

After a not so great doctor's appointment, the person I was with asked me, "Good news?"

Not a good question. Not then, not really ever. 

Think about it. What if it is absolutely horrid news? Your optimism will be far from appreciated. It also puts the person on the spot. What if s/he doesn't want to talk about it? Also consider that if the news was indeed good news, there would be a good chance the person would want to share it as soon as they possibly could.

A better question might be, "Is there anything you want to talk about?" Even then, though, just letting the person take the lead might be the best thing you could do for them. I am sure you are curious. Who wouldn't be? But give your friend/loved one the space to be with whatever they need to be with. 

This is about them, not you.

Any time I hear something I don't want to hear, I need to process it first before I share it with others. I need to know how I feel about it before the feelings of others show up. I need to decide if it is news that I want to share. I need to decide how I am going to share it. I need to work stuff through for myself before it goes any farther than my head.

That is one of the myriad of reasons I no longer have someone see the doctor with me. Even if others go with me to the facility, when I see the doctor, I am alone. I had someone once ask questions that I wasn't necessarily interested in the answers. But since she was trying to help, I let it go. Kinda. I was not particularly happy. I learned an important lesson, though, from that experience, and it is one I am grateful for.

It is another thing I suggest you be mindful of when dealing with someone and their medical concerns. You may think you need to know "stuff." How much do *YOU* REALLY need to know? One question I have never asked is, "how much time do I have left?" it would piss me off if someone else asked that question - especially if in front of me.

Does that person really need to have an answer to that question? I suppose there may be some people and some circumstances that would seem to warrant it. I just suggest really considering some of the things you might think are obvious - especially if you think they are obvious. 

If it was you in the situation, my guess is that you'd want to be in control, and decide who should know what/when. And given it is "your" thing, it should be respected. 

Will it be easy for the other people? Probably not. It may even piss them off. All too often a person's situations and issues can get turned around, and it becomes about those who aren't dealing with the immediacy of the situation, but rather the about the person who is dealing with the immediacy of the situation.

I realize there are overlaps. I realize there are no clear lines. The best anyone can hope for is compassion. If you were the one who was losing your ability to do things, if you were the one who felt  their dignity was compromised, if you were the one who felt like your life was no longer your own, or in your control, as hard as it may be for those who were helping, you would really want and appreciate any latitude and respect others could give you.

No one asks for situations like these. And the fact is many will try to avoid, or control them, as much as possible. There is a good chance that if you are trying to control a situation in which another person is the one immediately affected and suffering you may not be helping as much as you think - if what you do is done without much thought or regard for the other person.

I am desperate to try to find a way to take care of myself, especially if I really find myself in need. I am terrified of what could happen. It is not like I have a compassionate, understanding spouse, and live in my own home. I would almost rather die alone than be around people who would not treat me with the kind of respect I am talking about here. Whether or not that happens remains to be seen.

I am sure there are all too many people who have no choice and find themselves in impossible situations. I once helped a senior lady home from the grocery store to discover that she lived in a niece or nephew's house, in the attic. The situation did not seem welcoming, nor ideal. My heart wanted to help, but I had no idea what I could do. When I called her afterward, she did not remember me. I wound up just letting it go.

I suspect, though, that there are many who are only tolerated by others, and therefore not treated very well at all. I do not want to be one of "them." If I am on my way out of this world I do not want my last days to be ones that include being "tolerated." And this applies to not only my journey with cancer. Should I live to become an old woman, I feel the same way.

It is part of the reason I think about things like Death with Dignity. I'd much rather go out on my own terms, in my own time, than linger in a situation that is uncomfortable in more ways than "just" the physical. I'd rather be alone or dead than tolerated.

Boy. This post is intense. Deep stuff coming out. Fears. Emotions. Pain.

Sucky, but good stuff.

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People Only Do the Best They Can

It is interesting to consider that people only do the best they can. When you are "people" sometimes you have a hard time with how others perceive you and what you are doing or have done.

And, yet, when you consider "people" it is often quite easy to get caught up in judging them and what they do/don't do.

We very often are the very thing we don't like having done to us. 

I am writing this as a reminder to myself, as I want to judge another for their lack of response to me. It is made worse for the "fact" that I was told I wasn't trying.

At the moment I have made an effort, just, perhaps, not in the way the person prefers. Although that is only a guess on my part at this point.

But. Still. The ball has been in their court for quite some time, and they have not responded.

If they are truly doing the best they can, then they will get back to me when they can. It is so easy for me to sit back, question, judge. But I hate when people do that to me. 

Knowing all of this logically helps, but doesn't. My human self wants to do what it does so well. My human self is hurting, but wishes it didn't give a damn.

It is also possible my human self has got things all wrong, and if I only knew the "truth" of the other, might feel differently, more compassionate. I'd have to be willing to shift my focus to that person for that to even have a chance of happening - certainly not the easiest thing to do when feeling hurt and angry.  

This being human stuff really is difficult at times.

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Wednesday, August 19, 2015

Pales in Comparison

A little bit ago, I got up from bed to go downstairs. I only walked a couple of feet, and realized that it was going to be an incredible challenge to make it. I could barely stand.

I suspect it has been bad like this before. I just never pushed myself to move at that point. It is like standing and walking with incredible weights on my legs and feet. It is almost like I have no control over them. It is really hard to describe, and quite scary.

I pushed through, and just moved V E R Y slowly. I really felt like I could barely move. I even felt a bit like I might lose consciousness at some point. That feeling was new. Would I have to call out to my friend for help? He was watching TV, and was pretty much oblivious to what I was dealing with in those moments.

I got a little something to eat, and then managed to make my way back up to my bedroom. This is in some ways all too typical to what I deal with. I am just more awake than I have been other cycles, so a part of me has less patience, I think. On top of that, my body has other ideas and demands when I am conscious then when I am asleep most of the time.

It really sucks. I can say I will try not to think about it, but it is extraordinarily hard not to. The only way I could stop thinking about it would be to find a way to sleep more and/or shut off the part of my body that tells me how uncomfortable I am, and that I need to eat/do something about it. Don't think either one of those things are going to be happening. 

The worst thing about these feelings is that there is no predictability. They just hit when they hit, and I have to deal with them. I don't want to. I'd like to deny them. But, unfortunately, those things don't matter. This chemo world has a freaking mind of its own.

"Weakness" is considered a side effect. It really is a PROFOUND weakness. You may think you know what weakness is, but my guess is that most of you reading this really have only a faint of idea of what weakness really feels like. I am basing this thought on the fact that I had never experienced anything like this before - ever. And if you had asked me if I knew what weakness in the body was like pre-Cancer/treatment, my guess is I would have told you yes. I probably would have thought I knew with other treatments. 

But it all pales to what currently is.

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Feeling Really Weak

It has been a horrid day. 

My stomach is soooo not happy. All I have been eating is Raisin Bran. For some reason, it seems to be somewhat stomach friendly. But after it digests, I need to eat more. I have had several mini-meals of it today.

I feel extraordinarily weak. Very tired. 

I need to sleep, but after this morning, it just ain't happening.

I also should do stuff, but just can't do it. Any of "it."

That deeply sad feeling lurks, too.

I am tired of dealing with this stuff. This is NOT living.

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Female "Viagra"

As a hypnotist, I have been a witness to how hypnosis can help with many things - including those *gasp* sexual. Someone once even equated the effects to Viagra, but without the pill.

I am thinking about this because I just saw a Viagra type pill has been approved for women, but it apparently has some significant and dangerous side effects. (http://www.rt.com/news/312793-female-viagra-fda-approves/). I know some would be happy to know there is an option, but I would think this incredibly mixed news.

Hypnosis isn't a "cure-all," but it is likely something that could help many, if they only knew about it. If you are having issues, or even just want to have more fun, consider checking it out.

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Thinking About Stuff (at least trying to)

"Be happy with who you are and what you do, and you can do anything you want." Steve Maraboli

I read this quote and thought about how someone once quoted me on a blog who did not understand the intent of what I said. I also thought about how difficult it is to cover every base when speaking. It is not only difficult, but often near impossible. There are many times I say something, and I can hear a contingent "yeah, butting" what I said.

I think part of the difficulty is that things said are often taken as Universal Statements of Perceived Truth.

Once interpreted that way they can be used as blanket fixes and perspective for anyone's issues.

I don't know who Steve is. Perhaps I should find out. Has he ever dealt with cancer? Has he ever felt like sh*t day after day? If so, does he put a happy face on it, and just keep going - because attitude is everything?

To be fair-ish, I just went to find info about him. There is praise galore. I see nothing, however, about any personal obstacles, but rather just how he can help you get out of your own way.

If he can truly deliver, great. But where I have a question is in cases in which a certain range of "normal" is not possible. For people in some situations, there is no way they can do "whatever they want." And hearing that can be quite painful, for a number of reasons.

And I am not sure I am "just" talking about the more obvious/extreme situations. Can we really do whatever we want?

I think it can be problematic to believe that because when we can't do it then we apparently didn't do "it" right, or we did something wrong. Something is lacking, or missing. We are defective in some way.

Why do we believe we can do whatever we want? Does it give us hope? 

What if some things just are what they are? What if our life and circumstances are "supposed" to be a certain way others perceive as bad or lacking in some way? And, even if we can have a peace around what is, it doesn't make the impossible suddenly possible.

Perhaps perceptions can change, and that would seem potentially to alter the circumstances, but they did not really change at all. And maybe those are the times and places that "magic" can really happen. We do have a lot of those.

But some realities are not just perspective, and a shift just ain't gonna change things in such a way that "anything" becomes possible. And that goes for all kinds of people and circumstances. 

Is it really in our best interest to think we can do anything we want? I suppose it could motivate us, and give us something to aspire to. But, on the other hand, I think it can also potentially cause issues if we don't get to where we want to go.

I could tell you something wonderful awaits you in Alaska, and the only way you will get it is to get there. If you are physically limited, and don't have the means to get there, it doesn't matter if anything is there, or not. You can want it with every part of you, but it just ain't gonna happen.

Perhaps even the focus on wanting to do what you can't takes away from what you could have. And perhaps there are times you "just know" that what you are doing is right - even when things don't seem to be turning out.

Maybe the key for some is in believing anything is possible, but I can't help but wonder if there is any key at all. I wonder if there are times that instead of living life we spend our energy trying to figure it out while trying to find ways to make it work the way we think it is supposed to.

If that is what we are doing, are we missing the point?

I have been working in this post a while, and am feeling crappy. Hopefully it makes some sort of sense, as I am going to publish it "as is."

Cya.

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Tuesday, August 18, 2015

So Frustrated.

I can't say why, without being too revealing about another.

But very annoyed. Very frustrated.

Be Grateful for Life

I keep hearing people talking about how - if you are still alive - that is all that matters. If you are still breathing, then "be grateful."

Here's the thing, though, not one of those making this grand prouncement is dealing with a major illness, or major situation. Not one.

Can there be those who can both say it, and be dealing with a crisis? I would guess yes. But I would tend to think they'd be in the minority.

When quality of life is minimal, when pain is great, when there is a lot of uncertainty, I do not think that platitude/refrain means the same thing to a person dealing with a crisis, as opposed to one who is not. 

It sounds good, and is so easy to say when not challenged in the way that many are. I would suggest this particular idea may not necessarily be the best thing to say to someone who is struggling, no matter how well-intentioned.

There is a chance it will work no where near as well as you would like it to, and quite possibly have the opposite of the desired effect. You likely have no clue what another is dealing with, and if your situation sucked as much as theirs, there is likely a high probability you would not appreciate hearing it, either. 

As always, I can't speak for everyone, but I also know that I am not alone in my perspective. Hopefully, what I write gives you something to consider when wanting to help another. 

Sometimes the best help is no help at all. Sometimes life just sucks. Sometimes there is pain. Sometimes life does not live up to the myriad of Rosey Platitudes that sound good when we don't need them, but fail miserably during many of life's worst, and most challenging, moments.

Sometimes silence or acknowledgment goes a lot farther than an attempt at a fix.


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