Tuesday, April 22, 2014

This Sucks & Pisses Me Off

Things like this piss me off in a HUGE way. (http://www.dispatch.com/content/stories/local/2014/04/20/cancer-saga-grips-family-2-towns.html)

People like this get more help for a phony situation than I do for my real one. I realize that it is hard to know if something is real or true if you don't know the person. But if records of mine were ever legally required, the people pulling them, and making any allegations would likely find themselves embarrassed.

I am all too willing to provide proof for anyone who is legit in offering me help. I recently even told someone a doctor's name. I suspect they were trying to make sure I was legit. I didn't like doing it, but it only makes sense.

I have people who have gone with me for treatment who can actually say they have seen me get it. I have pictures of being hooked up to the chemo treatment. I have videos at every stage, and I would have to be a damn good actress if this wasn't real.

Scammers are so much better at getting more than me because they truly try to manipulate. All I am trying to do is survive. This type of thing so freaking sucks for people like me.


Wounds

A person could be wounded by a knife. It could be because someone else wounded them. It could have been intentional. It could have been an accident. It could have been self-inflicted in some way. Any which way you slice it, it is a wound. The person has been hurt. The fact that the wound occurred at all is likely the most important aspect to the person suffering.

And yet there will be those who will try to tear it apart. They will attempt to assign blame as a way of understanding it and in order to hold a person accountable. Depending on what the picture is perceived to look like when everything is said and done, there may be a greater or lesser amount of sympathy and/or empathy.

But there is still a wound.

I am writing about this because I am finding something very interesting as I go through this journey. I am finding people are resonating with what I am dealing with - even when they are not dealing with cancer themselves.

For some it may be another type of "hidden" physical ailment/illness. For others it might be something else. One person was talking about his emotional wounds that were ignored and discounted by others. Deep wounds, and wounds that had been inflicted over time, and happened a long time ago.

It doesn't seem to matter how we get to a point of discomfort and a lack of compassion or understanding from others, just that we do. We have more in common than most people realize, especially when they're so focused on what is different. If someone can't overlay my situation on to something they're dealing with, they likely will not be able to understand what I am going through, or why I react as I do, or say the things I do. But if they can see the similarities in how what they feel is ignored or denied, it would matter whether we share a diagnosis, or not.

What is interesting to me is that while what I have said is often the case, there are times in which people will go the other way. They will look at my situation and think they know exactly how I feel, and that it is exactly like theirs, when it really isn't. A wound is a wound, but some are superficial, and others go much, much deeper.

As I sit here, I wonder which is more annoying, as I have found myself annoyed at both ends of the spectrum. It really doesn't matter which is, but it didn't stop me from posing the question.

What I do, however, think matters is that if we were to be able to get to the most basic parts of ourselves, we might have better understanding and compassion for others. If we can get past how things seem to be, we can see the "wound" more clearly. Often what all of the other things do is distort what we think we see.

You could easily wear clothing and a bandage over a wound and no one would ever know it was there, unless there was some sign of pain. But even then, it couldn't be too bad, right? You're sitting. You're talking. You're breathing. You're doing. It can't be that bad, at all. So stop complaining, and just get back to the place that held the illusion that things are as OK as they appeared to be.

I often say that what I write about is more about life and living than it is about cancer. The illness just seems to be the filter that I speak through. It is the perspective that I create my conversations around. There are likely to be some people who are so focused on the "c" word, they're likely not to hear another single word I say. They're too busy being afraid or judging what they think they know about me or my situation.

There is nothing more profound for me when another person tells me how they connect to me or my situation. It speaks to me in a way that little else does. It tells me that I am speaking in a way that others can hear. There are many more times it feels like no one hears a dang thing I say.

A wound needs a community to heal. I have no idea of what the actual mechanics of the body are, but if the necessary parts of the body and the cells did not act in a certain way, and in some form of unison, healing would not occur.

It seems to me that there is a metaphor there. It seems to me that we are all the Walking Wounded in one way or another, and when we pull in, cover up, or deny things, we aren't really allowing ourselves to heal. Maybe it is through the sharing of our wound that true healing occurs. The thing is, though, we have a culture that encourages us to do the opposite. There are so many things that are not supposed to be shared. There are so many things that aren't shared, for fear of the stigmas and the resulting ways people will act.

Could it be the reason we are so disconnected and hurting is because we are all trying to act like everything is fine when it's not? If we could let our shields down we would discover how much we really share. It has only been through my willingness to share what I am dealing with that I have learned about the things that others deal with, and hide, too. It connects us on a much deeper level as a result. We can speak to each other in a way that might put others off. We understand each other.

There is so much of my situation that sucks. Immensely. But there are moments in which I am so incredibly grateful for the perspectives I now have because of where cancer has taken me. I would like to think I could have found them some other way, but if that was the case, perhaps I would have.  Through showing you my gaping wounds that I am able to connect with you in a way I never could have while I was trying to pretend that I had it together and all was right with the world.

We think we are somehow better served by being someone we're not than being true to who we are. The problem is that when we don't allow ourselves to be who we are, we are denying ourselves, and creating a wound that we might not see until cancer shows up. It could be that the denial is actually the cancer. We gave it a home by not filling the space within ourselves with who we really are.

I don't say this to say that all cancer is self-inflicted. Maybe none is. It sucks when we are always trying to find someone or something to blame. In a way it makes sense. If you can find it, you can fix it. If you can't find it, then you are victimized by it.

But what if you can't find that thing, or you blame the wrong thing or person? It may temporarily give the illusion that it is better, but it will more likely be a mirage, and will be no where near fixed.

Maybe what I said is more a metaphor to consider than a reality. How much of you is filled with YOU? How much of you is the you others think you should be? How much of you is living in the shadows, afraid to be seen or acknowledged?

Up until a couple of years ago, who I truly was was in hiding. I never really felt like I could be who I was, and say the things I really felt. I always felt off-kilter. I always felt like there was something missing. And despite trying on some level to be who others thought I should be, I failed miserably, and wasn't feeling any more satisfied for the on-going attempts.

It is now a day, or so later...Not sure where I was headed with this. As often is the case, I was just sharing all that was on my mind. So I am just going to leave this where it is, in this unfinished place.


Disability - Going No Where Fast

I just got word about Disability. The "word" came back that my paperwork was incomplete and that I "made too much money." How in the world is either thing possible? I hand walked the paperwork to their offices with everything they asked for. If they had one piece, they had it all. And how in the world is someone who is making no money making too much???

So now I have to resubmit a claim online. I have no idea what this means for time for processing, but apparently now that there are people aware of things personally it should help.

In the meantime, I desperately need financial help. I don't know how many different times and ways I have said it. But I am desperate. I was really hoping Disability was going to come through/kick in and and I could stop begging for help.

But even when it does come through it won't be that much - if it does. Apparently there is a question as to whether or not some would get it without being on chemo/treatment.

It seems fairly clear they don't want to deal with me. Well, the feeling is mutual. I would rather not deal with them, either. But I really don't know what else to do.

If you want to help me, I put together a page of things that can be done. There are things you could buy for yourself that could help me. You can tell people about my story, and you could donate even just $1. Really. Just $1. You may not think it counts, or means anything, but it can add up.

I recently posted about a scammer who raised over $20K. I know that there are people who likely question me and my scenario, and how legit I am. I get it. I get it better than anyone make think, or know. That is why I am willing to do whatever I can to give you whatever you need to validate my situation. It sucks, as it is. I give out much more personal info that I have ever felt comfortable. People even tell me it is TMI. And yet, for some, it isn't enough.

If you have the means to help in a significant way, and have doubts, and want proof, please talk to me. Please let me know what you want or need in the way of assurances, and I will do what I can to make that happen.

In the meantime, a non-family member is going with me the next time. We will try to film a video while there, and hopefully another party immediately validating things will help.

A friend suggested that I just post all of my records online for people to view. There are several reasons I will not do it that publicly...not the least of which is to give scammers something to take as their own.

I already posted pics of a scan I had when I had the recurrence. That made me a bit uncertain and hesitant, but I did it any way. But that doesn't mean I wouldn't do more one-on-one.

PLEASE PLEASE PLEASE help me. The page you can check out is http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html You will see info about my MP3s, my recipe booklet, and my artwork.

And, again, I cannot say this enough...$1 really does help. If you haven't helped in that way, and feel like you do want to make a difference, you really can by sending $1. Even if you think I am a fraud, would $1 really matter?

Many people would not dare to even get to know me at this point. It is too intimidating and scary for most. I get it. I really do. But I am worth getting to know. I have a big heart, and would do anything I could for someone I cared about, and have done things for those I have never even known personally. Sometimes I just had to go with my gut, even when I wasn't sure about them or their situation.

If we never did that, our world would suck even more than it sometimes does. If you don't care to help me, I hope you will at least consider helping someone else who needs it - especially if they ask for it. Odds are it is difficult to have to be in that position, and it likely hurts to have to be that open to more judgment from others than actual help.

(You can also see more info about me and my situation here http://anewme515.blogspot.com/2013/07/my-current-status.html)

If you've already helped, I can't thank you enough. I would appreciate it if you could please keep sharing.

Please note if you share this status, all it will do is share the link, and not what I have written. Feel free to copy this when you do share (and that goes for any of my statuses. I don't think people always know why you would share the links you do, and since I know you want to help, it is something you might not have realized).

Thank you.

Sunday, April 20, 2014

Happy Easter?

Earlier someone wished me Happy Easter, and followed it immediately with "I hope I did not offend you."

I get that some people get offended by assumptions. But if someone wishes me a Happy Holiday, I just take it as them wishing me a Happy Day.

I know some people will think otherwise - and with what they believe good reason. I respect it. I just don't really understand it, and I suppose I do not have to. I just think if we are all tip toeing around things, we aren't really connecting with one another.

Who wants to walk on egg shells, especially on Easter? In all seriousness, Happy Easter to those this day means something, and "just" Happy Sunday to those it does not.

Friday, April 18, 2014

If only speaking out was its own was a currency

So...last night was a rough night.

Suddenly, out of now where, I dived. I dived deep into an extended moment of depression. I suddenly was aware of how my life was stymied. I was suddenly aware that I couldn't seem to get anywhere. Even worse,  I was acutely aware of others making life choices and plans. I was in some ways jealous. They were moving on. They were making changes. They were LIVING.

At some point someone was talking about planning something 4 months out with me. Talk about depressing. It might seem to be a good thing, right? I hate to say it, but I can't really plan that far out any more. I don't want to plan that far out if it is something I really want to do. If I really want to do it, I want to do it now. At least now it will happen. At least now I am alive.

I was also frustrated about hitting the bottom of the financial well. What happened with Disability yesterday took me way down. It is disgusting what they do in regard to it. Absolutely despicable. Some think it is designed so that people die without a single dime in payment. That is why there is a 6 month waiting period, and then even if they decide you are eligible for any back payments, they only pay you half immediately. The other half they make you wait for a year, or two? If you have a lawyer involved, they get paid before you do.

There is so much about this that stinks. Someone I was talking to called it dealing with cockroaches. Situations like mine may call people out, and you may "kill" them off by making changes. But then another one comes in its place, doing things that are just as crappy, or even crappier.

There was an agency that had a phone number and the message said that people should not leave a message, as calls would not be returned. That was deemed a problem. Well the voicemail no longer says it, but it hasn't changed the way they interact with it. People still do not get calls back.

How is it that agencies are allowed to get away with this? When I worked in a job I had to be accountable. Not only that, but there were times I made myself accountable, even when it was something I could have easily have brushed off. And those were with "things," not people's lives, livelihood, and well being.

I question every single messed up thing that happens with me. They make me angry, frustrated, annoyed. I then speak up about them. I can't seem to keep my mouth shut these days. Since dealing with Disability I have heard stories. Before dealing with it, I had no clue how freaking messed up they were.

The fact is that odds are good I am supposed to be eligible for a "compassionate allowance." The not so good news is that it may not be as much as I might have hoped for. Essentially I was out of work for over a year before I had a recurrence, but that might not count toward anything. And then, once the recurrence shows up, they "deduct" 6 months from the timeframe. Then they split it in two. Sounds like it won't be much at all. But hopefully it will be something. Sometimes things work out better than this, but I will only know when I know.

In the meantime, I still need help in a big way. The question is how the heck to get it. How do I say something I have already said a myriad of different ways and many times before? How do I convey the situation I am in in a way that people would be inclined to step up? It's not just that I want money handed to me although, granted, it would be (and has been) pretty awesome. I want to find sponsors. I want to find people who are interested in my MP3s, or my art or my recipe booklet. I want to find people who are willing to engage with me in a way that could benefit each of us, and/or others.

There have been people who show up, unsolicited, to tell me how valuable what I am talking about is. There have been people who have seen the value in what I had to offer when I went on my cross country trip. They saw the bigger picture, and often they were even a part of it.

I want that "connect" key to work more often. This is very much about survival for me, but it is so much more. I can only hope and wish that people who get that, people who understand and appreciate that, can help me get to a better place. I think I am in some way helping people from where I am, but I wouldn't mind standing in a better, stronger place and doing it from there, too.

I get afraid sometimes that may never happen. Stories about cancer seem to only go one direction, and that is down. But there are miracles. There are wonderful things that could happen. And given the choice of deteriorating, being unable to work, and receiving donations and Disability, I would so much rather continue to write and speak out on the things that are often silenced.

If only speaking out was its own was a currency. I would be a very rich woman.

Want to know ways you can help? Please check this page http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html


On Family and Other Stuff

In thinking about my situation and my family I have been trying to figure out what I can say about them. I don't really talk much about them, and I am sure for anyone who might be paying attention, they likely wonder where they are.

I don't really know how to talk about them without talking about them, and odds are whatever I might say could get me into trouble. There was one time I said something and I got a phone call blasting me for what I wrote.

For someone who tries to be so open about everything, it is quite a paradox - especially when I know that many people are sitting back arm chair quarterbacking what I am saying and doing and how my life looks.

Is it that my family has terrible people? Or is it that I am a terrible person that no one wants to help me? Something is not right, of course, because if it was, why would I need the help of strangers?

One thing I will say is that every family has "ONE." One odd ball. One person that just doesn't fit. One that can never seem to say or do anything right in the eyes of others. One who is always judged and misjudged and misunderstood. Well. Guess who that is in my family?

Another thing I will say is that I do not think I have a bad family. I am sure they do love me. But, if you have lived life for any length of time you know that just because you are loved does not mean anything. And sometimes it means things that aren't exactly helpful.

The fact is I am trying my best to stay away from them, and it is not because of who they are or how they are, but more because of what they symbolize. In my head I hear the voices. The judgment, all knowing voices. "Well, if she needs help, she should get over it."

How would you feel if you had to give up your sense of independence? How would you feel if others got to make choices for you because you had no means to make them for yourself? How would you feel having the inability to express your life any other way than someone else might like or dictate, or have to deal with the repercussions of doing it your way?

Odds are you'd want to stay away as long as you could, too.

A friend of mine took care of his dad when he was dealing with a bunch of issues. His dad could no longer drive, and was at the mercy of my friend when it came to what he ate. My friend had his dad in mind when he did what he did, but he also had himself in mind. Any time his dad could have some repercussions due to what he ate, guess who had to deal with it? Eventually his dad went to live in an Assisted Living situation. Was it better for him? Who knows, really? But he no longer had to fight with his son to eat what he wanted to eat. Although he probably still had difficulty getting what he wanted, given the limitations of his health and activity.

My family doesn't pay attention to food in the same way I do. I would prefer to eat organic whenever possible. I could see them telling me something was organic, when it really wasn't. The logic being cost, and the idea that what would it matter any way? I think they probably judge me (although this is more speculation than anything else) for spending the extra money on organic.

The other day I was actually thinking about this particular piece of my puzzle. I cannot tell you how many people's first question to me when finding out about cancer ask me how I am eating, if I am eating organically/healthily. Many believe that to be important.

Well. That is all well and good. But the thing is, eating better also means spending more money, and when I am running out of money, then what am I supposed to do? I am supposed to somehow take care of myself with magical money? I am also supposed to do supplements and seek alternative treatments, and all kinds of other things. But with what? How?

My situation has an endless amount of frustrations and things that are difficult to explain in totality. The thing that sucks more is that I feel a need to try to explain every damn detail of my life. Many times there are pieces in which I even start becoming defensive, and people wonder why.

I try to anticipate all that I can about what I will be facing so that I can address it in some way that might have a person able to see my situation somewhere near close to my perspective, or at least not through the tinted, thick lens of their own. I imagine there are times I fail miserably. There are other times I probably piss people off. There are yet other times I might even make things worse.

There seems to be no easy or blanket answer to my situation, and yet many think that there is, or should be. It is the way people seem to view many aspects to life, and many people in relation to their lives and dilemmas. The fact is that it sucks in a big way, especially when another human being is struggling. The fact that they're struggling means that they haven't given up, and yet there will be those who will determine that the fact that they're struggling means that there is something deficient or wrong with them.

There are countless stories of people who went from 60 to 0, and never by choice. It happens. Life happens. And there are times that it sucks for a person to be in whatever circumstances they're in, whether you or I understand it, or not. If we had to depend on others to understand our circumstances to help, we'd be in big trouble.

People give to those who suffer in earthquakes and hurricanes who have never had that misfortune themselves. People do have the ability to be empathic, and to understand the core of another's suffering and dilemmas. The fact is is that I think many times it is easier not to, or people just don't want to.

I am not sure it's malicious. I just think it can be scary. I also think that because we have a tendency to compare, people make comparisons and think that somehow they know what another person is dealing with, when in fact they don't.

I have had people tell me they understand that I am having trouble making money and selling things. Many of these people have others in their lives (like a husband who is working) who can take care of things when they can't. The thing is their situation may require more money which creates an urgency for them, but it does not equate to my situation.

I DO NOT HAVE A SIGNIFICANT OTHER WHO CAN PAY MY BILLS. I HAVE NO ONE BUT ME.

Am I yelling? The caps would seem to say so, and I am sorry if it seems that way. I just don't know how to convey to people the urgency of my solo situation. Imagine that you had no one who could step in and pay your bills, and you were doing everything you could to do that for yourself, but were getting essentially no where. How would you feel?

I guarantee you it would suck.

I am grateful to be living with a friend, so at least the part of life that means having a place to not only lay my head but truly function is taken care of. It's important, but it is not everything. He is also truly just a friend, so I can not depend on him for anything else. He knows my situation, and has not offered. His hospitality, though, is no small thing.

I am sure people somehow assume that the situation is something it is not.

Man. I did not expect to go down this road again. But I did. I rarely know what I am going to write about until it comes pouring out. There are times I am less than thrilled to revisit these tracks. But the thing is the last time I asked for help when I put my recipe book out, I got about $300.

$300 is wonderful. But it stopped as quickly as it started. And I am back to where I was. The $300 is all but spent. I am on the edge of my seat regarding Disability. I was told I should hear something by the end of this month, but the "something" could be a denial of some sort. Of course I am hopeful for the best possible outcome. As I am typing, I am waiting for them to call me back. I want to see if there has been any determination. Even in the best case scenario, I think it can take 4-6 weeks for me to see any money.

I think it is disgusting that they treat people dealing with cancer this way. I bet there are way too many people who never see a dime of Disability because everything takes so freaking damn long to process. It really makes me sad, not only for me, but for those who have to deal with it, too. You know their tune would change if they ever found themselves in need the way many are when dealing with cancer.

It is stuff like this that makes life harder to deal with. The illness is bad enough. But it is the stuff of life and of people and relationships that really sucks.

Yesterday I saw a posting by a woman who recently passed away. She had been dealing with cancer, and was sadly at the end. Apparently people must have been telling her about the miracle cure of marijuana because she made some comment about needing love and compassion and companionship then more than she needed it.

I wonder how many people understood that statement.

For someone who deals with cancer any length of time, you can likely place a bet that the person is aware of most anything you will suggest. They will be aware of the supplements, the alternative treatments, the complementary treatments, the healing practices. If you suggest it, there have likely been many others who have, or will, too.

In semi frustration I said yesterday that I was physically and fiscally doing everything I could to help myself. In both ways I am significantly challenged, and I don't think people really understand how stressful it can be to either not be able to pursue something, or perhaps have even pursued it spending money they didn't have only to not seemingly have had good effect.

There also becomes the challenge of acknowledgment. If I don't acknowledge what people say, there is a risk they think I do not appreciate what they offer, or potentially am ignoring them. Neither of which would be the case. Responding, however, takes energy and time - 2 things I
limited access to, as it is.

What would be of help more than anything else right now would be the financial ability to pursue these things. I am not without ideas or options. I am, however, without an ability to act upon them.

In addition, I am likely to be one of the most open-minded people you will ever know. I am not known to be "weird" for no reason. What many people do not realize is that I have done healing work for others. I am a hypnotist. I have a familiarity with many practices. For as much as people have suggested, it is very rare that anything is outside of what has already been introduced to me in some form or fashion.

I realize if someone wants to help, they may have no way of knowing this, and it is all too easy to assume that the reason I still need help and healing is because I have yet to find the ONE thing that will have that magical impact. At the same time, can you imagine how that must feel for someone? You have reached into as many places and things as you can, and still come up what some might say is empty?

I don't know if I want to say empty because maybe things are just as they're supposed to be on some level. Maybe things are just exactly how they need to be in my experience. But it still sucks when so many seemingly different things are just different versions of the same types of other things and it feels like you are still left wanting and needing the ONE thing that will be magical.

What if that ONE magical thing has nothing to do with anything or anyone outside of myself? What if I am the person or thing I am hoping for? What if my life has been bringing me to this point by all of the things that I have been exposed and open to?

I have a habit of not wanting to listen to others, any way. I took my trip last fall (27 days/over 5000 miles) despite the fact that very few thought it was a good idea. The most "important" people, the doctors, certainly didn't think it was one. If it had been up to them, I would have been on chemo again since last September.

What an ucky thought.

__

It is now a day later. After writing the above, Disability called me back. Not happy news.

I wrote this on Facebook after the call:

Sooooooooooooooooooo PISSED. I called social security more than once since I physically dropped off the paperwork in January that they needed to address their denial. I was told it was received and in process. I was told I had to wait several weeks. Then I was told the first estimate was a minimum. Something told me to call them today. I was told today that my record does NOT show the paperwork, and that info has been sent to the local office regarding follow up. They can not tell me a damn thing about what that means. About timeframe. About NOTHING. In addition, I was told that if I did not get the paperwork in by the end of January I would have to start the damn process all over again. I cannot tell you how freaking angry I am right now. I need that money! I need help, desperately. I have been trying to be calm. I have been thinking I will have answers and money soon. They should be so damn ashamed of themselves treating people this way - anyone, much less people who are dealing with illnesses that can take away their life long before they ever do what the freak they are supposed to do to help them!!!!!!!!!!!!!!!!!!! If anyone knows what the hell I can do please let me know. It looks like I am going to have to call them every freaking damn day, maybe even a couple of times since I seem to keep getting conflicting information. The woman on the phone got an attitude with me when I got upset. Instead of understanding, instead of trying to do anything to help beyond the formal "sent a letter to the local office," instead of proactively trying to do something about something that apparently has happened to other people at other times, instead of being empathic and trying to understand why the hell I would be so damn upset, she got an attitude. I even apologized to her if if seemed I was pissed at her, because I wasn't. I am pissed at an ineffective system that seems to screw those who are already greatly screwed. Maybe if the "systems" could realize that there are people who are hurting they would give a damn to do more to help them instead of getting defensive about their crappy way of dealing with things. How would they like to be me sitting on the edge of my fiscal cliff with no help in sight? I have tried to do everything right. I have tried to do what they asked. I even called more than once to follow up, and was given the wrong information! And I am sitting here, a year later, empty handed. This is not right, and there should be some damn recourse for situations like this beyond a damn shrug of the shoulders. I had thought about asking for a supervisor, but was so angry when I hung up, I forgot. Tomorrow I am going to try the local office. I hope they're open. I don't want to have to physically go in there. It is a big waste of time. But if I have to, I will. This is disgusting. I am so disgusted.

The day just went south from there. I will write a different blog entry on what the rest of the day was like. This one is already long enough.

Tuesday, April 15, 2014

Appearances


Every time I put up new pics i know how much goes into what you wind up seeing. Some of the ones I like the best involve make-up, a wig, lots and lots of pictures taken, several discarded pictures, different angles, different lighting, uploading to a program to filter it, many different ways, with many incarnations until "wallah" the photo you see. 

I tell people all the time that there are some really, really bad ones, but they don't believe me. They think that because I can get a really nice picture, I must be photogenic. You only have to view my Facebook images to tell that is not necessarily true. 

I have been tempted on occasion to post some of the really bad, but the thing that stops me is I don't want to tempt someone to use it in some even less than flattering way. Of course, no one ever should do that, but we know what can happen.

Maybe one day I will be bold. But I am not there yet, obviously.

The wig above is mainly blue with pink highlights. I will have to post something closer to the original so you can appreciate it. 

I am really tired today. Not sure if I should blame the rainy day, or something else. I have enjoyed yhe momentary distraction of the gift. 

I have often said I feel alone and unheard and lonely. I know that there are people who love and care about me. So much of what has gotten me through in the last year has come through their love and kindness. But, as you may realize, when something you value is missing, it is as though you don't really have it. And, in that stark moment, that is all that really matters.

It is at times difficult to share these aspects of my life. The more I reveal, the more I risk being judged. Earlier today I saw how someone posted how he wanted to raise the money to pay off the cafeteria bills of all of the students at a school. It was a remarkable thing he was choosing to do, but the one thing that stood out to me was that he did not care why there was a bill. He was going to pay off all the bills, if he could, without condition.

So often I think people see what happens in my life and judge whether or not I need the help, whether or not I seem sick enough. I think they question what I would use the money for. More than once a person has told me that people don't care what I use it for. They just want to help. But I don't necessarily believe that with the kinds of questions I am asked. 

I have also had people wanting to know who my doctor is, suggesting that they would pay the doctor directly. Obviously, they don't think things like gas or insurance or food should be something worthwhile to contribute to. There is more to a cancer situation than medical bills. You may not know, or realize it, but there are a lot of things you likely take for granted because you can do them and/or afford them. You may think nothing of spending over $5 for a Starbucks coffee. I wouldn't even be able to consider doing that, unless someone else treats.

That is why I appreciate those who occasionally treat me to something like a wig. There are times I would almost prefer the money for something more crucial. Hard to sometimes enjoy the fun stuff worried how I am going to pay for the necessities. But I realize it is an important part of my well-being, so I do what I can.

From a distance, a stranger is not going to know the hell I go through. They are not going to know the choices I need to, and do, make. They are are not going to know the ugly behind what superficially appears attractive - whether it is in how I look, or how my life looks.

Appearances certainly aren't everything, and can often be deceiving.