trouble a brewin

A friend of mine noticed that I have not been blogging. He is correct, I have not been. I have been really sick. You know that things are just not right when you feel very accomplished when you can pay attention to what is on TV! I hesitate to write this, but I guess it is important. It is what I have been dealing with, and how I have been feeling....so, I even though it is more blather about being sick.....here it is.

I was doing pretty good. I had lots of energy, I was over doing it, so I was in more pain...but basically, I was doing better than I had in weeks. During this, I had a referral to home health still left over from the hospitalization in May. The social worker was hoping they may be able to come in and help with house work during the times I got really sick. Well, they couldn't do that, but they decided to come in and monitor the pain for a month to hopefully "help me on the home front".

The first thing they did was suggest a non-narcotic pain med to my doc. I have been on it before and thought I remembered that it was not a good thing. It is the anti-convulsant Gabapentin, that has been found to work mostly for nerve pain. I talked with my doc, and he had written that I couldn't afford to take the suggested dose because of lack of funds. That was true, as when he prescribed it before I was working and I had a huge deductable. So, I thought I would try it again. This was at the beginning of October.

The other thing that these nurses do, is count the narcotics in the house. I joked with the nurse about this calling her "the nazi pill counter". I have been known to take a few extra than prescribed from time to time, but I have always been honest about this and always told my doctor. So, it did not in the least bother me that she was doing this...until....

Toward the end of the October, the pill counts came up very wrong. I mean really wrong. I had no explanation for this. The nurse had me go see the doctor that night (I wish I could get myself in to see him that fast!), and I didn't have any idea why they were so off. In fact, I didn't even figure out how off they were until the next day. I didn't go back and count them, and when she said the numbers it meant nothing to me. (I am horrible with numbers, to the point that I am quite sure I have a learning disorder around them....but that is another story, and problem.....and don't even get me started on story problems as that was the math nightmare of the century when I was a kid...LOL). So, the next day when I counted them myself and looked at the calendar, I was very shocked to find out how many were missing. So, I did what anyone would do, I tried to figure out what happened. Did someone come in my house and steal them? Did I go crazy and toss them? Did I do something in my sleep? I didn't have any idea.

My doctor was basically kind to me. He suggested we blister pack the meds so I would know if I was getting up in the middle of the night....which was fine with me. (however the pharmacy wouldn't do it). Then, although I didn't make a connection....people started pointing out to me that I was forgetting things. I also started realizing that looking back on the month was like looking through swiss cheese. I could remember part of events, but not the whole thing. For instance...I remember putting on make-up for Halloween...but I do not remember handing out candy. I remember going to a friend's house for dinner, but I don't remember actually eating or what we had. The most shocking gap was not remembering that a family member was in a serious accident.

In the mean time, I agreed to go down to the Dartmouth pain clinic to start getting services there to try to get the pain better diagnosed and taken care of......at Home Health's suggestion. My first appointment was on Nov 1. After driving there and back, the pain in my back went from nothing....to about a 20 on a 10 is the worst pain scale. Not only was I dealing with the pain, but with the fact that yet another activity that I enjoyed....driving, seemed to be taken away from me. I was MISERABLE. The doctor there suggested another kind of narcotic, as they believe in something called rotation. They put you on different kinds of narcotic meds so the body does not get used to one kind. She didn't give me a prescription, but wrote a report to my doc suggesting this.

I called both the home health nurse and the doc because my back was hurting so bad, I really needed more meds for the breakthrough pain (for those of you who don't understand this....the narcotics I am on is long acting, then you get short acting to take when the pain gets worse than the ability of the long acting to work). But, you may have guessed....now that the pill count was so off, he didn't want to prescribe me any more meds. He wanted to wait for the report from the Dartmouth doc to see what she suggested. Finally, after a week, he got the report. I went to the pharmacy with the new prescription....and they, and no other pharmacy in the area carried it. I went mental.

I called my doc's office crying, but they ( I was talking to the social worker) would not do anything about it. They said they would order the med and it would be here in a week. I was not happy. I was still taking the old long acting narcotic, but it was not helping that much. So, I did nothing but lay on the couch and wish I were dead. (I was not suicidal, but I was thinking that death would be a good thing). And not only was I in pain, lots of horrible mind wrenching pain....but I was dealing with being called a liar. This, to me is almost worse than calling me the "C" word. I try to live a life of integrity, it is very important to me....and now, I am not being trusted.....

Finally.....after a week (a week ago) the new medication came through, and I took my first dose with a huge prayer......"please God, help this work well and give me back quality of life." On Saturday, it was beautiful outside. I was inside laying in bed, sweating, shivering, and feeling like I was going to die (and still wishing I just would). Years ago, I had been taking Methadone, and decided to go off it. I went into horrible withdrawals, so I know what that feels like....I was in withdrawal. I called Home Health, I called my doc's office.....to not much avail. Finally, on Monday I got in to see my doc.....which turned out to be really awful. Basically, he treated me like a drug seeking abuser. I had to pee in a cup, and worse yet...he did not believe me when I told him I had figured out why I had taken all those extra meds....

It was that new med that I had started in the beginning of October. A friend suggested that I look at all my meds and see if the side affects had memory loss (of course it was the narcotics she was blaming). At the time I said to her "yeah, but I am not on any new meds"......but, that was not true! So I looked up the side effects of Gabapentin, and lo and behold.....amnesia and memory loss was listed. It suddenly made sense to me....I think what happened, I would take the meds, but still be in pain a little while after...and forgetting that I had taken them before..take them again.......no wonder I was doing so well for a couple of weeks!!!! But, how scary is that? (and just for the record, I now use a medicine box so I can tell if I have taken them).

I told my doc, but he said it was just another theory like someone had taken them, or I had done it in my sleep. For the first time in the 10 years I have been working with him, he treated me kind of mean. I was so hurt. I HATE IT when people don't believe me. I also hate it when people who don't even really know me, who have been on my medical "team" for a month...seem to be in his ear with the theory that I am abusing or selling my meds.

So, I started looking at this. I realized how much people, medical professionals, friends, etc.....blame the narcotics on what is going on, rather than what may actually be going on. I have to say, I do this myself too. Possibly the most dangerous (or could have been) example of this was when I was hospitalized the first time in April. I was in kidney failure, which can cause hallucination and altered mental status.....but they said it was a possible overdose. Because of that, I was back in the hospital 2 weeks later, as they had got my kidneys working again, but didn't do anything to address the real reason they were failing. (I will also include here that the home health nurse told me that my doctor told her this story too. I asked her in what context, and she said the same thing I was saying.,...my doc was on vacation for the first hospitalization and the people who didn't know me thought I had been abusing the narcotics, although the drug screen came up negative) The next example....my doc has twice blamed the narcotics on my memory problems, when I know it is not the narcotics, it is the side effects of the anti-convulsants. I know this, as when I quit those meds, my memory returns, even though I continue on the narcotics.....but he wouldn't listen to this. He said he had proof in a report from another doctor I saw......it does say MEDICATION is causing the memory loss, but at the time I was on something called Topamax....aka dopamax and stupamax!

I feel like I am in a really horrible catch 22. The narcotics work, they give me a quality of life. They allow me to do things like stand and cook, sit for more than a few minutes, walk across the street. I don't know if I can live through a life without them. I am NOT psychologically addicted to these things. I don't crave them, I don't take them to get high, I don't do any of the addictive behaviours of trying to figure out how to manipulate the meds to get a high...like crush, snort..etc. I for the most part take them as prescribed. Even people who are my friends have become rather judgemental about them. That also hurts. If I could find something else that works (and it isn't like I haven't been agreeable to trying just about everything that has been suggested)....I would very gladly give over these meds.

So, I am about to make a decision that may be the end of me. I want to go off them. Not because I truly want to go off them....but I think it is time to see who I am without them. I think they have become dangerous. Not because of them, but because of people's attitudes, judgements, misconceptions, and predjudices.

In a way, I feel like I am writing my suicide note. Not that I am going to kill myself....I wouldn't do that, but I may as well be gone and away. I can't imagine that my quality of life is going to be at all good. I won't be able to sit long enough to be on the computer....driving will be out, walking will be out. I rather doubt that I will feel like talking to anyone. I know some people will say those are only fears, and that if I try to go off the meds...maybe it won't be that bad.....and I say.....it has been that bad when I am on them!! For the past 2 weeks, I have been on narcotics, not enough....and my quality of life had been for shit.

But, something has to happen. I have also been doing some research into doing this inpatient....not looking good for that. Since I am not a drug addict, I really don't qualify for rehab. There are some inpatient chronic pain clinics.....that are expensive and not covered by my insurance plan. I don't even know if my doctor will agree to this folly, but I guess we have some talking to do.

I am going to the spine clinic at Dartmouth to explore the cutting, snipping and burning of nerves coming off my spine to help with one aspect of the pain I am in. (I go in soon for a diagnotic injection into my SI Joint, if it helps, then they go back and burn the nerves in that area) So, maybe if I can get at least some of the pain reduced...in theory, that may help me cope with the rest. I am going to see their CBT therapist (which is what I used to be, so I think it is ironic when people think that I don't think this will help. This is their own assumption that goes along with the drug abuser theory, as I am sure many people say "that won't help".......I called them and asked when we can start.....not for many months unfortunatly...apparently this woman is world renouned and popular), so it isn't like I am refusing to exploring other methods of pain control.

I am tired people. I am tired of the pain, the misconceptions, the isolation, the loss of my old "life", and really the loss of me.....that this illness has caused. I don't believe it is the narcotics that has caused all this....but if you do....then you really didn't read what I just wrote...did you?

Treat No Trick!

A friend of mine just said he would read an experience I put on FB on my blog. Now, he may have read the last one, and is trying to tell me that he did.....as he is my favorite token Republican in my life!! :) So, he may have not enjoyed the last blog......but you will enjoy this one!

I love this little village I live in. It is what American should be. We tend to really watch out for one another, and care for each other, and yesterday was a really good example of that.

I was over at our little food co-op, the local hang out for me. I love everyone who works there, and the atmosphere. There are usually members of the community shopping and we always seem to have time for a conversation deeper than the weather. So, yesterday I was lamenting the fact that I could not afford Halloween candy for the trick- or- treaters this year. I live on a very popular block and can go through $40 of candy easily. A few people were talking to me as I said this.

Later, I was laying on my couch and watching TV. I heard a noise at my door, and looked out the window to see a kid speeding away on a scooter. I didn't feel like getting up at the time, but later when I went out.....what should be hanging on my door, but two large bags of Halloween candy and a note saying it was from my 10 year old (I think) neighbor down the road!!!! HOW SWEET IS THAT!!!!!! I can do Halloween now!!!

I love Halloween in this town. I don't decorate, but I do love handing out candy and seeing the costumes. We have a Halloween Parade that is fun to watch. So, I was sad that I would have to hide in my house and pretend I was not home.....but not now! I also know that the family that helped me out, is not that much better off than I am.....so this is one humbling experience.

So, my Republican friend.....there you go! I suppose, this is really what should be happening in our world. We all should be taking care of one another, so the government doesn't have to step in....but I hate to say it...this is rare! I think though, if we are going to have to weather the upcoming storm.....We need to all take a lesson in this little village of mine. We do need to start taking care of one another. We need to realize those that don't have family or ways to help themselves, and be more proactive in reaching out to them. Maybe that is what this world needs, to get us "out of ourselves" a little bit.

I am sitting here thinking of an elderly woman who lives down the street who has asked me to come visit her. I haven't....I should. Maybe, I need to put my words into action....maybe I need to go visit her. I always think because of my disability "what can I do for anyone"...heck, I can talk! I can go visit! I can sign petitions to help the wild life, I can vote, I can be nice to the little kids in the block, as well as the not so little kids. There are many things I still can do....and I will. Will you?

So, much thanks go out to my little goblin candy provider, I hope your generosity has sparked anyone who reads this to pay something forward this next week. If you do, report back here or on my facebook page....ready, set....go!

Help the Wolves....please!!

I am sitting here crying. I don't do this very often, so when I do, it is for a damn good reason! I am crying because I just got an e-mail from an organization I support which is Defenders of Wildlife. The email I got was asking me to sign a petition going to the Discovery Channel asking them to ban Sarah Palin's show about "her Alaska". One of the reasons this petition was started was because she has not only allowed but encouraged arial slaughter of the Alaskan Wolf. One way she encouraged this was by paying a $150 bounty on any left leg (I can't remember if hind or fore, but that shouldn't matter here), that was brought in. That is what has made me cry. I can't believe anyone can be so callas and mean. Look into the eyes of this wondeful wolf hybrid that is my neighbor, and tell me these beautiful animals don't have a soul.

I am from Montana, where the wolf was reintroduced into Yellowstone park. On one of my visits back to my old stomping grounds, I went back to Yellowstone and sat and waited and saw the wolves. They are so wonderful. I am kind of strange this way, but that kind of beauty and power, just gets to me....and makes me cry. I cried at the Dolphin show at the Boston Aquarium too. For what ever reasons, I feel so close to these wonderful creatures. All animals, wild or domesticated. Of course, sharing my life with a wild dog has kind of made me more aware of how special and amazing wild animals really are!!!

So, would I be crying if Sarah Palin took out a bounty on right wing fundamentalists?....well, probably not. But then, they can take up arms and defend themselves.....these animals can not. They were here before we are. How dare we think that they are encroaching upon our land. That is complete nonsense. They don't want to have anything to do with us. They just want to do what they do best...exist and make sure their species does not die out. They help our eco system.

I am currently watching a nest cam set in South Africa of an Eagle Owl. I thought the name of the cam was funny....as it is potplantowl. I was tuning in thinking I would see these stoned owls hanging out in marijuana plants, but oh no, much more sad than that. These owls are nesting in someones potted plant on their balcony, as they couldn't find any natural place to nest. Luckily, they picked someone who is just interested in putting a cam up, and showing us the irony of this. How many people would either through ignorance or negligence, destroy the nest?

I cry a lot over animals. I want to see them safe. I want to see them living their lives like they should. If you have a moment and want to do something little to help these wonderful creatures, please go to the web site of Defenders of Wildlife and look at the actions you can take.

One of these days I hope that I can sign a petition to get rid of all the idiots out there like Sarah Palin, but until then......

May I Be a Good Friend...

One thing I have been thinking about is friendship. I am very lucky, as I have many good friends. Some, I have never met! I guess in years prior to computers, this may have been called "pen-pals". Now however, I have some very good friends who I chat on the phone with, and write emails to, and I consider them just as good of friends as those who are in my everyday life in the flesh. In fact, they may even know more about me than some of my real time friends. When my uncle recently died, I talked to my aunt who I haven't had much contact with in recent years. She told me that one of the qualities that I had that she envied a little, was being able to make friends easily. I guess that is true.

When I was a kid, I thought everyone was our friend. The guy that pumped gas, the store clerk, and the librarian. My father never knew a stranger. He also made friends easily. I suppose I learned that skill from him. The other thing I think caused this friend making behavior, is being an only child. I did not have sisters or brothers, I also did not have any extended family members that lived close, so I had lots of friends. I grew up in a great neighborhood, and there were kids my age in almost every house on the block. So, friends were always an important staple in my life.

Usually, I have always had many good friends, but one or two really close friends. Lately, I have been thinking about all the friends who have left my life. I am sad about that. Some died, some just faded away as our lives took different paths, and some left under stressful conditions. Some have gone away without any real explanation. Those are the hard ones. Actually, both of my closest and longest relationships ended that way. One was a thirty year friendship. We were closer than friends, really. To me we were more like siblings. I don't know what happened. Our lives did take drastically different paths, but it seems like the older I get, the more I want to rekindle this relationship.....but I wonder, can it work? If I can base a friendship on just shared memories of our crazy past, then maybe. But, when our lives are now so different, maybe it isn't possible to become close once again. It makes me sad though. The person who has the most history of me, is unavailable to me.

The other day I was explaining some amazing gifts some new friends have bestowed on me to someone. These are friends who I have met through the internet. The person stopped me and asked, "Do you have any real friends?" I knew what she meant, but I pondered that for a moment before I answered. Are these not "real" friends? They feel real. I suppose if we were in a room together, rather than on the phone or the internet it is possible that the "chemistry" would cause us not to enjoy one another's company.....but I doubt that. I don't have a sense of smell, so even if they never bathed and smelled horrible....I wouldn't care!!! LOL I could imagine a scenario where they were energy suckers and the boundry crossing would be difficult to handle....but usually, I know this just from talking to someone.....so I think, when and if we ever get into the same room...we will still like one another! So, yes....I have real friends, as they are not imaginary! (What the question meant was do I have friends that I go out and do things with....yes I do)

I had a number of these as a child. I apparently thought they were real. My mother told me that I almost had a break down one day when she slammed the car door shut on one of them! So, they must have seemed real to me. I don't remember this. I don't remember my imaginary friends, but I have heard so many stories that I think I remember them. The only one that no one knows about is the only one I actually remember. I wonder what that means? (If you want to do some arm chair psychotherapizing.....go ahead, my ego can take it...LOL)

My other closest friends.....my animals. Some would possibly say that they would not really be friends, but I think they are the closest friends, and the best friends I have ever had. All they seem to want to do is love me. How many of my friends can I say that about? I have some good friends, but lets face it....the human ones always have some kind of strings attached. That isn't necessarily negative...it is just the nature of us humans...

So, as I sit here tonight, and ponder the meaning of friendship, and friends....I feel pretty darn lucky. I have had, and currently have some amazing friends. Because I have lived in many places, I have also had the fortune to make all kinds of friends, learning about all kinds of cultures, beliefs, religions, and backgrounds. Luckily, I think I am pretty open minded and non-judgemental. I learned a long time ago that it is ok to agree to disagree about things. I have learned so much from my travels, and my curiosity of other people's lives. (Good quality for a psychotherapist huh?)

If you are reading this, you may be my friend...or maybe you just started reading my blogs recently. I want to thank all of you who are reading this, but mostly I want to thank all the friends and acquaintances I have had throughout my life. You have come into my life for a reason, and even if we ended our relationship on a negative or hard circumstance....I learned from you. I believe even those that we consider our "enemies" ( a strong word that I don't really think I apply to any of those who have been in my life, but it is 3am and my word choices are not as plentiful as they could be when I am a little less tired) are our greatest teachers. I truly love all my friends, past and present. I wish I could do something for every single one of you to show my appreciation of our walk on this earth together. Whether that walk was a day, or 30 years, you have touched my heart and changed me. I just hope my interaction with you was positive, or helped you grow in some way.

May all of us find friends that nourish our soul. May we hold onto our friends who love us, and let those who challenge us go with a prayer for their continued well being. May I be a good friend to all who come into my life.

Am I Depressed??

I can start off by saying....NO. But, so many people
seem to think I am, or should be. Yesterday I had an interesting experience at my doctor's office. He said he declined my home health nurses's request for a DNR. I said "no wait, that is correct". He looked all concerned and said, "I have to explain this to you. If you are outside and suddenly drop, no one can touch you, even if you could be resucitated you will die"
" That is correct"
"But you are pretty young to want that"
"Come live in my shoes, and see if you want to continue living if something says it is my time to go"
At that, my dear doctor gave me stats to back up my thinking. I really think he was giving himself stats to be ok with me, at 54 years old, not wanting to be kept alive. I suppose some people would think that was coming from a place of depression, but for me.....I think it is the most sane and wonderful choice there is. I certainly don't want to be kept alive by machines, but really, I want to go when that first touch of the "death angel" comes for me. I think that will be one of my departed animals BTW.

I am not afraid of death. I don't welcome it, but I have lived a pretty event filled life. I have no regrets as I look back, in fact mostly I smile. I have had easy times and hard times. Right now, because of my health, I am having the hardest time ever. Sure, I find ways to keep myself happy. I am enjoying what I do have, but truth be told, I am not all that happy with my quality of life. I have learned to adapt. Another comment made at my doctor's appointment yesterday....
I said in response to a small political discussion we were in, "I pretty much quit watching news, I find that those CNN junkies I know are all pretty depressed. I know that the world has things that suck in it, I really don't need to be reminded on a daily basis".
My doc agreed and said that it gives him a feeling of being out of control, but it is really a mirage that we are in any kind of control at all anyway. I agreed, and said, "Try getting a chronic pain illness, or 5 in my case.....there is nothing like that to wipe away any thoughts that we are actually in control of much of anything. I learned that you learn to roll with the punches, you learn to be grateful of the good things, and you focus on what you have, rather than what you don't have."

So, yes, if you look at my life, you may think I am depressed. I spend a great amount of time inside, laying on my couch. I don't reach out to people like I used to, I don't attend social events. So, based on that, on a forced isolation...well, it could look like depression. But, I am so grateful for those friends that have hung in there with me, that have not given up on me because I can't participate in their social invites. I am very grateful to my medical providers who have hung in with me and know that I am doing my best to help myself feel as good as can be.

So, I am not depressed. I am just moving along the best I can, waiting for the day when the pain will lessen, the fatigue will lift, and my life will have a better quality. I still have some hope that this will happen. As you know if you have been reading this, I have been adjusting my goals so I do have something to look forward to. I think this is key.

So no, I am not depressed...quite the opposite, even if I did request a DNR!!

How Did I Get This Way?

I have been thinking a lot lately, which can be a dangerous thing, but I have decided to share some of these meanderings through my mind. I have been mostly thinking about what I have. Well, let me be honest, it came originally from my dwelling on what I have not....until one day I was standing at the sink and turned on the water. Magically, it came rushing out. Clear clean water. Yeah, so what you may be thinking (or if you are regularly reading this, you may already know where I am heading), but there it was, clean, clear, safe, water. I could just hold a glass under the faucet, and there it was, water to drink. Amazing. How did I end up being one of the fortunate ones?

How did I end up being born in a place where this is totally taken for granted. I realized at that moment, how incredibly lucky I am. I am not walking 3 miles, to get a little bit of clean water to drink. I am walking to my kitchen sink. Then I started thinking about all the other things that I have that make me feel incredibly lucky. I won't bore you with all these, it is the same things most of you have. A roof over our heads, a car or at least public transportation to get from here to there, a telephone, the internet, wow. Really, how did I end up just plopping down in the middle of a place where things are easy. But yet we complain. Well, I guess I should not use "we", I complain. I imagine you do to, it seems pretty normal for those of us who have everything, to think we want or need more. I wonder what the person in Africa, who has to walk those 3 miles are dreaming about? Maybe the same things as I do. But, I bet there is a huge difference too.

Then I realized how lucky I am because I have done a lot in my life time. Possibly because I have never settled down into a family, or a relationship, I have had the freedom to do a lot of living. I have had so many adventures, that I can't even remember some of them. How lucky is that? I have traveled through most of these 50 states, 7 European countries, and most of Canada. I have experienced other cultures either through living with them, or being friends with a vast variety of people. I know what living in Appalachia feels like, where blue grass music was born. I have had numerous Native American friends and been very lucky to be invited into their culture (my mother was born and raised on the Fort Peck Reservation, which was just one of many times I was living close within this culture). I have done so many things that some people only dream of....walking on fire, shooting class 5 rapids, living in the 60's and 70's (enough said,,wink wink), living through 2 volcanos, 3 hurricanes, a few tornados, one major flood, numerous blizzards and ice storms, and a sand storm. I have met famous people, and people who should be famous. I have even attended an NFL game.

I have hiked in majestic mountains, walked across prairies and on beaches. I have flown in the skies in small planes and jets. I have seen the glaciers in Glacier National Park that are now almost gone. I have watched Old Faithful shoot toward the heavens on countless occasions. I have ridden in semi trucks, rode with a motorcycle club (gang really), lived in a motor home and a teepee. I have lived in very large cities, medium size towns, and a tiny little village. As the song says, "I've been everywhere, man".

Then there are the things that were not easy, but I still feel very lucky to have been placed in these situations...working with children with leukemia, people with Alzheimer's, teens at risk. I have been involved in various churches, a separatist lesbian community, practiced Buddhism, and have many friends who are witches who have shown me how to love the Earth and all it has to give us. I have been involved with a school for psychic healers, where I was there to help them learn by rating their readings/healings of me.

I have lived within the creative community of the arts and performing musicians. I was a starving artist, I have performed in bars, and for crowned heads in Europe. I have lived a life where money did not matter, when my father was considered quite wealthy, as compared to now (and other times in my adult life) where I am living below the poverty level.

I could go on, I could go on for hours....I am so lucky. I also feel very blessed by the people who have come and gone in my life. I have had long lasting relationships with childhood friends, and brief encounters that were all intense and lovely and full of learning opportunities. I have had amazing kindness shown to me, as well as cruelty and abuse. I have cried over lost loves, lost friendships, lost pets. But, I have laughed, and laughed hard and long. I am so very very lucky.

How did I end up being who I am? Nature? Nurture? I believe by being mostly open minded and non-judgemental (or at least I try), this has allowed me to take in all these varied and marvelous adventures in life. And, it is all an adventure, now isn't it? One of my favorite lines from one of my favorite television shows was by Ed Chigliac on Northern Exposure. I don't remember the exact quote, but it was something like "all we have to do is wake up each morning and we have the possibility of another adventure". I like that. Even now, even when my body feels like every single one of these past listed adventures has taken a huge toll on it....waking up each morning still holds numerous possibilities for a new adventure. I may not hike the Appalachian, but something else just as wonderful will come along. I just have to wait, and be open. My adventures are not over. I am lucky. Because not only do I have endless opportunities for wonderment and awe in my life.....I can turn on the water, and take a drink right from the tap. How did I get so lucky?

Entitlement

I haven't felt like writing in the past couple of weeks. I guess because nothing has come to me that made me feel passionate, or angry, or happy, or whatever it is that makes me want to share my ideas with you all. But today, I got a post on FB that made me stop and think, you may have seen it. It is a pic of a youngish looking ER doctor, who is complaining because the person he is working on is covered in tattoos, has a lot of bling, smokes, and eats at fast food restaurants. He said this is what is wrong with our system. It isn't the medical system that is broken, it is our social system. Well, yes and no.

The first thing this brought to mind is when I was working, within a medical clinic setting where most people there knew I was on medicare/medicaid, a rumor was spread about my spending habits. Basically, someone overheard me say that I wanted an Iphone. It went from this statement, to my supervisor being called in to warn him that someone who is working and claiming to be on SSDI with medicare and medicaid is buying things like an expensive Iphone.

Ok, lets get real here; there are many things wrong with this picture! First, how me saying I wanted an Iphone, transferred to me going out and actually purchasing an Iphone was the first assumption that was just wrong. Next, the fact that anyone can tell me how to spend my money, is just wrong. Also, for those who get all paranoid and freaky about how can I be on SSDI and be working...yes, you can be on disability and work. They actually encourage it. So, what this brings up is: if you are poor, and you are using money that basically you worked for most of your life (I have been giving up a portion of my check since I was 16 to that fund), then apparently people around me have the right to monitor my spending habits. If I am living on a fixed limited income, well by golly, I had better look like I am poor. Nothing new and shiny for me! BTW, I don't even own a trac phone. You see, I can say I want something, it really doesn't mean I am going to get it.

But, this is a good example of how those of us who have had to swallow our dignity, to push away our pride, to become less than....because of something that is totally out of our control, has forced us into living a life we were not planning. Yes, there are those who abuse the system. There are those who have figured out how to screw the government out of money. We say they feel "entitled". But, isn't the example I use above just as bad? Why are people who are working "entitled" to tell me how to spend my money? Why should this be an issue in my work place? Why do they even listen to rumors in the first place? Why wouldn't they just come to me rather than telling my supervisor? Yeah, to me none of this makes any sense.

When I questioned the reasons behind this inquiry into how I am spending my money, the explanation was as follows: "I think it is because there are people here who are working really hard for their money, and to see someone who is on disability affording things that they can't, gets them upset"....ok, wait red flag, red flag..... First, and again....I don't have an Iphone, or any phone that is not connected to a land line. So, this should be a non issue to begin with...maybe we should start talking about rumors....but, that was not the case...the case was "people who are working hard for their money".....Oh, I guess that means because I am on disability, I am somehow taking it easy for mine? I remember working prior to getting sick. Work was most of the time enjoyable, fun, easy. I didn't think twice about getting up in the morning, showering, eating breakfast, and getting out of the door on time to drive to work. Well, since becoming sick and being on disability, just getting to work is more work that most people do at their actual job. I remember a few days during the winter, that by the time I walked through the snow, shoveled to get my car out, and got in the car.....I sat there and cried. I was too exhausted and too much in pain to even think about going in to work....but I did. Did I take a few more breaks that day? Maybe. But, just to be clear, that did not mean I was in some worker's lounge with my feet up, or chatting with co-workers. No, what that meant for me was that I just stayed at my desk and answered the phones, and did some paper work. I tried not to do any extra running around. So, I don't think that because I was on SSDI, somehow my job was any easier than theirs' was. In fact, I would say, I worked even harder for my money.

Why? Why would I do that, when all I would have to do for work is "run out to my mailbox". I have heard that one too. "Yep, that is her job, she just has to open her mailbox and laugh all the way to the bank." I know there is a perception that many people who are on public assistance want to be there. I don't believe this. I think if anyone was given a way to go back to work, or earn money in a way that was acceptable, they would. It is easy to look at someone on public assistance and think that they are the problem. I don't think "they" are. I think as long as we can look at "them", and think it is "their" problem, well then it can't be ours. It is an us and them thing. We are not in their shoes, that is because we want to work. "Look at whoosywhatsit over there, was on public assistance and pulled herself right up and out of there and is now working. If she can do it, so can wheresywhosit." And that is where the conversation ends. It is their fault. Or maybe it is the system's fault, it got people all used to depending on it, so it could be the system's fault. " Well, it is either the person's or the system's, but it sure isn't mine. I have a job, I like to work. I may not even like to work, but I do because I do not want to be a drain on society. I do not want to be one of THEM. And, what would we be if we did not have THEM?" I think maybe the answer to that question is easy to answer. We are them, and they is us. We say they think they are entitled to all this and that, and that is the problem. We feel entitled to judge them because they receive all that they feel so entitled to. So, we are all entitled. The meek shall inherit the earth. I think maybe, just maybe the "meek" are those of us who are living on public assistance!

It is so ironic to watch our culture. We don't like people who feel entitled, yet we put up on reality (ha ha) TV people who have lots of money and little sense. They become our heros. We think that it would be great to be just like them. We all want to have 200 + cars and motorcycles in our garage (Jay Leno). We worship those that can throw parties for 300 people each night in their mansions (Dennis Rodman and other sports heros). We are told if we work hard, if we follow our dreams, we can get there too. Every night there is another example of this put before our very eyes. Rappers/musicians who make it out of poverty and are dripping in bling and extravagance. They did it. Those that can throw away money are our heros. Politicians who help keep the very rich, the very rich....they are heros to some people. They promise that if you just act/think like them, you will be rich too.

I was thinking the other day about how companies used to take care of "us". You put in years of dedicated service, and the company would take care of you. The church would take care of you. Your neighbors or extended family would take care of you, if you could not work. Now, no one is taking care of anyone. No one wants to be a "them". So, in order not to be a "them" we have to keep all that we get. We have to buy things like Iphones that show that we are not a "them". And when one of "them" gets out of line and tries to look like one of "us", my God, get out the regulations that tells us how to keep them down. Humility is a good weapon, use that one.

So, this doctor, the one who is upset because he is treating a young woman who is poor, living on disability and has the nerve not to eat well, or at least quit smoking....well, she is the problem. Not him, he has to work with THEM. Good him.

Last night, I used up about 3 hours of my life trying to figure out how $80 in food stamps per month is going to allow me to maintain a healthy diet. Don't get me wrong, I am so grateful for those $80. I certainly can eat lots of beans and rice. And I will. But, I would like to have some variation in my diet. I searched the internet for hints on how to eat organic, local, healthy and the diet I am recommended to follow to reduce inflammation to slow the progression of Dercum's Disease. It is not going to be easy. Almost makes me want to throw in the towel and go buy some hamburger, and the cheapest most fatty at that. I can afford that, and probably get about 10 meals out of a pound. But, that isn't good for me. So, I have to work just a little harder to maintain a healthy diet. So, I am kind of getting paid for doing a job, I am getting paid to figure out how to stay healthy and not use up any more of this money they are "giving" me, so I won't be a "drain on society".

I know I get fuel assistance this year. But, what does that mean? How much will I have to come up with myself. I won't know until November. The thing is, I don't have any extra money to pay for fuel. So, how low will I have to keep my thermostat this winter, to make that heating oil stretch. Last year it was 55 during the day, and 50 at night. This is not good for my health. Being in the cold makes my muscles tense up, then it makes my pain flair. This causes more trips to the doctor, looking for those drugs that prove to everyone that I am just an addict. Yeah, I asked for this. And, I am entitled to this by God. Maybe the thinking is: if we make her keep her house so cold she can't stand it, she will by God get up and get to work, then she can stay warm!!

No, what I really want is a job. I want to feel good, to go out and feel useful. I want to help others, I want to do good things. But, apparently while swimming through the gene pool, I didn't pick up much that was very helpful toward accomplishing those dreams.....I am entitled, to all the judgement that keeps Them from becoming Us. or visa versa, it really doesn't matter any more....and I still don't have an Iphone.