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.

My Big Grey Cat With Green Eyes, I love you.

Today I took my beautiful cat, Indigo to the vet to have him put down. So, tonight, although I am more tired than I should be to try and write this, I want to pay this cat, a little tribute.


I was living in North Georgia, when I came across a flyer advertising kittens. I wasn't really thinking about getting a kitten, but the flyer was so catching. I called the number and went to the house. OMG. They had something like 8 female cats, all deliver about 10 kittens each at relatively the same time!! I had never seen so many kittens in one place, all just running around. It doesn't make for easy choosing, but I ended up with 2, Indigo and his sister a little calico I named Kahlo. (named after women artists, the Indigo Girls, and Frieda Kahlo).

I brought them home to my little cabin out in the woods, and realized that Indigo was not the sharpest cat I have ever had. He used to climb the walls of the log cabin, get up under the ceiling and then could not get down. I had to get the ladder out, and rescue him. This happened at least 3 or 4 times a day! Once they were able to go outside (all shots and fixed), they discovered that they could climb a tree off my deck that led to the roof.....where I would have to go get them at least...you got it....3 or 4 times a day. Oh would I get mad. Inside was one thing, but this tree/tin roof thing..well...that was a little different. Yes, it was like a cat on a hot tin roof, and it wasn't like a cat on a hot tin roof...it WAS a cat on a hot tin roof. I would have to go get him, because his little paw pads would get burned up there.

One day, it was cool and overcast. I decided to see if he could come down on his own. I left him up there for 2 days. I put some water up there for him, but I figured he would come down when he got hungry...nope not him. He would stick his tiny little head over the end of the roof and meow at me with lots of angst. So, I crawled up there and rescued him once again.....this went on for months.

The other fun little game we played, was how many times a day we can step on the kitten. This poor little guy, at the time had grey eyes, grey fur, on a grey carpet in a cabin with poor lighting....luckily he never got hurt, but I would get major scratches on my legs.

What saved this little dear one, was his purr and his love. This little kitten was pure needy love. He would come over to me, to anyone...and want to show his love. He would purr and rub his head all over me. He would then settle in for a nap in my lap. I would sit for hours, reading with my little "man" (the only one in the house). He was a lover boy.

The next adventure that we had together was my move back to Vermont. I had a pick-up with a cap, and he and his sister made that their home for about 2 weeks. The place where I was staying had dogs and other cats, and they were afraid for my cat's safety. After two weeks, I had to get them out of that pick-up. I was driving up the road one day (way back in the boonies) and found an abandoned shack. My friends knew who owned it, so we got permission to keep the cats there. I would go up every day, bring the dogs (my dogs) and visit them, feed them and such. Everyday, Indigo would meet me sitting on the door step like he was waiting. (which I am sure he was). One day, his sister didn't show up. I found out that she had decided to adopt another family, as she was not a camping kind of cat....or a much smarter kind of cat. However, Indigo stayed in the shack, (which was kind of amazing, as there was no way I could block it off to predators, I just prayed a lot!!!) I don't remember how long my poor cat stayed in the boonie Hilton, but too long for sure.

I finally found a place for all of us to land, and there we stayed for 2 years. This however, was inside and with another person who loved cats....had 4 of her own. Indigo could go no further than 2 adjoining rooms in the house. However, I believe after the camping experience, this didn't bother him too much. He was becoming quite the meatloaf cat, as he couldn't really exercise much. I think at his most, he weighed around 22 pounds.

Next we moved here, to the house I bought. It was perfect for him. He (and my dogs) could let themselves in and out on their own. Indigo, I think because he was raised around dogs, was much more "dog-like" than feline. When I came home from work at night, he would run to meet me just like the dogs. He was never picky in what he ate, if it was in his bowl, he would eat it. Sometimes when the dogs would bark at things, he would look at me with a funny look on his face, and meow at the top of his little kitty cat lungs....I think the funny look was he never quite figured out why he was doing this.

Once, and I mean once....he caught a mouse. Now, this is an old farmhouse....so, this is not for lack of having all the hunting material he could possibly ever want.....he just didn't want. I used to joke that the mouse was a kamikazi...and jumped right into his mouth. That was a big day around the sub-dude ranch.....so named for him. (not a typo, it is a play on words that I used to use as my answering machine message). He was one big, subdued hombre.

So, we lived quite happily for the next 11 years or so. I noticed that his eye was runny, but he seemed fine in all other aspects of cat health. Then he started sneezing and coughing. But the scary thing, was his, in- the- middle- of- sleep- yowls. I thought he was dreaming. But, now his nose was running. Again, he did not seem sick, but about 2 weeks ago I took him to the vet. She found a lump on his gum, but thought maybe it was an abscess, and gave him an injection of anti-biotics. She told me if that didn't work, and if the lump did not shrink or the other symptoms clear, then it was most likely cancer, and warned that there was not anything that could be done for that.

The day after I brought him home, he became obsessed with being on me. As I stated, he was a very loving cat, and always wanted to sit in laps getting petted, but this was different. If I went to the bathroom, he was jumping up on my lap. When I was in the kitchen, he would reach up and put his paws...ummmm claws....into my leg and try to just hang there. I spent the entire day giving into his needs. We slept on the couch together all day long...and night. He would look deeply into my eyes, and I could feel that he was giving me a message. The next morning when I went to feed everyone, he was no where to be found. This was extremely odd. I looked everywhere, and called out for him...but he was not there. A day and a half later, he showed up at dinner time. I put some food into his dish, which he normally gobbled down like the dogs, but he just kind of licked it. He used to always come to me when I called him, and where ever I would pat my hand, he would lay down in that spot; but now, he would just lay on the back of the couch, close to my head, and sleep. I would invite him onto my lap, but he would just look at me in the eyes for a few seconds, then turn his head away. (He was my heating pad for my sore thighs and knees, he always would lay there if I would pat those areas, and purr and keep them warm for me).

A week went by (I think). He would eat a little, but would still not engage with me. Then yesterday, suddenly he started wheezing. Not only that, but it sounded very "wet". Also, his whole face looked misshapen. His nose was kind of pushed over to the side. I decided this was it. I called the vets office and made an appointment. I called a friend and asked him if he could come dig a grave for him in my yard. And at around 3pm on 9/9/10 my beautiful grey cat with big green eyes crossed over the rainbow bridge.

The vet's office was very good about how they set up the room, and about giving me time to be with him. We positioned him in his favorite sleeping pose, all curled up with his paw over his eyes, and wrapped him in muslin. I then put him in a pretty purple cotton pillow case, and brought him home and buried him.

But, the story doesn't end there, because if you know me, you know there is a coincidence...a spiritual show if you will.

Last night, a friend who came over to say good bye to him, questioned me about doing this as she thought it wasn't time. Of course, that put all sorts of doubt into me. The vet tech who gave him the injections looked him over after the first injection that calmed him, and said she was sure it was time. I won't bore you with all the reasons why, but it did make sense to me....but there is always that doubt. As he was laying on the table (which they had draped with fleece so it wasn't a cold sterile exam table (nice touch I thought), they left me alone with him for around 5 minutes before they came in with the final injection. Of course, I used that time to shed many tears, pet him, and hold him, and tell him how much I loved him. (which I had been doing for the past week too). I also called in my spirit guides and helpers to assist him with his transition. I told him who I thought would be coming for him, and to look for them.

On my way home, I decided to take the back road, as it is beautiful and less traffic. I was still crying. On the radio was jazz ballads which were very soothing. I asked the guides to give me a little sign if he was with them. I was listening to a song that sounded familiar, and though to myself "Isn't there a song that has the word Indigo in it?" I thought about putting in a CD of the Indigo Girls (his name sake) but that just didn't feel right. The announcer came back on air and said that the song he had been playing was "Misty", he then said "and now I have a beautiful rendition for you of a song played by Thelonius Monk, it is "Mood Indigo".

I knew, they were with my cat. He was safe and being greeted on the Rainbow Bridge.... they told me so. Until then, I had been crying. When I heard that, I kind of gasped, almost ran off the road...but then smiled. He was ok.

Some people say after they put down a pet, they see them. That hasn't happened to me with Indigo. But, all day today, I have heard him. I hear him purring, which he continued to do up until the very last seconds of his life on this Earth, in that beautiful, soft and silky kitty cat body.

So, rest in peace Indigo, our fourteen years together were good. I and your dog buddies will miss you, and we loved you very very much, but I am very happy for you......Happy First Day in Heaven Mr!

With thanks and gratitude to Amy at ORAH, and those that helped him transition.....you all know who you are.

slip and fall

It's been awhile. I want to write, but every time I try, nothing comes out. I think between the pain that I have been experiencing, and the recent death of one of my very favorite uncles, I just haven't had the energy to come up with anything to write about. Fall is almost upon us, I suppose that could render some kind of reflection, or thoughts about what is to come. I used to love fall. I loved getting new clothes, or at least getting the old clothes out of storage (and that $20 bill that seemed to have been forgotten in my coat pocket), and dressing in a way so I could be warm in the morning, but cool in the afternoon. I did like the way the air felt lighter, crisper, and the big sky in Montana was always so blue. Yes, I loved fall back then. But now....

I should love it, I am in Vermont, home of the king of falls, the showboat of all of the falls in all of the states, the stereotypical image of fall. It is beautiful. The first time I saw a mountain side ablaze with the near neon blast of color, I actually welled up. I had never seen anything like it. I haven't grown complacent about those colors; Mother Nature still amazes me, awes me, and makes me realize that I am one lucky woman to be able to bear witness to all that she provides. But....she also provides that thing...that stuff....that horribleness that one can only enjoy while young, agile and healthy. That stuff that is cold, and when you are not watching will bury your car....the terrible "S" word....snow.

I used to love snow. I was even called "the Snow Queen" amongst friends. Snow was fun in every way. Fun to walk in, especially when it is really really cold and the way it squeaks when you walk on it. It is fun to play in and with, snow forts, snow balls, snow sculptures. Not to mention skiing, sledding, ice skating...all the things that would make me plead, beg, pray for snow. But the best, that first real snow storm. How it makes everything quiet, and white and clean. How beautiful and sparkly it is in the sun, and the most beautiful shade of periwinkle blue that shows itself right before sunset. Yes, this is all beautiful, and marvelous, and wonderful, and blah blah blah.......

Now, because I am an old person (only in body mind you) that has been forced to walk like some web footed fowl with arms out to my side, rocking from one foot to the other in very slow small steps, I hate snow. I don't like that it is slippery. I don't like that is cold and wet. I don't like that if I fall, I may very likely break my ass, or leg, or arm, or hip. It is too much fear. I don't like fear. Even the cold that once felt refreshing and invigorating, now seems to have found the entrance to every joint I have on this body, and it makes them stiff and they creak and grown. No, I don't much like this cold and snow business.

Not to mention the hassles this stuff brings to me. I have to shovel, not only the side walks, but my roof! I can no longer do this, so I have to become some beggar woman asking neighbors to please help me. Then, and this is the worst.....there is the heat bill to pay. I start stressing about this in the spring. Living on a small fixed income is not conducive to a stress free fall/winter. It isn't like I can just put on more layers and huddle around a little electric heater...oh no...I have all manner of pipes that can freeze and burst....I know, it has happened...a lot! So, not only do I not have the money to pay for the heat, now add the heat guy, and the plumber. (oh and if I am really nice, and feel like I can expend it...a few dollars for those helping with the shoveling). So, whatever money I may have for things like food, clothing, entertainment (yeah right) now goes to winter maintenance......and I would like to add, this means sitting in a cold and drafty house with the thermostat turned all the way up to a balmy 50 degrees. Ah yes, ain't this the life?

So dear readers, at this point I am almost sure I can hear you all, in unison saying..."Get the hell out of Vermont". Makes sense doesn't it? But wait, then I would miss stuff...like that first snow flake landing on my tongue. That first big snow where all you can do is cuddle up inside and sit and watch the absolute beauty of the show Mother Nature is providing. There is also a community that comes with the white stuff. People helping others with shoveling, or just mentioning the fact that we weathered another great storm. There are more community dinners and potlucks, filled with delicious things like hot soups and stews. So winter is not a dark, lonely time of the year, if you don't want it to be.

But, I still do kind of dread it, and welcome it all at the same time. Maybe it is the survivor in me...ahem, the stubborn survivor in me...."I'll tough it out, I can get through anything!" Maybe it is just that I am a Northern woman, and that is where my blood just wants to be. Maybe it is that I can't fathom having to pack up and move.....maybe there is some kind of magnetic force right under Vermont that grabs us, and won't let us go.

Running with that theory...I may be onto something. I have noticed that there are a very high number of like thinking people in this State. Mostly it is people thinking good thoughts, caring thoughts, you know...love your neighbor kinds of thoughts. Maybe that white stuff and the dropping thermometor keeps those out that can not feel that same magnetic pull. There is a joke about that, the weather keeps away the undesirables. Maybe?

So, for at least one more year, I will bitch, moan and complain about the weather. I will absolutely freak out because I won't know how I will afford fuel oil. I may slip and fall on the ice and snow, or hurt my back shoveling. I may not see very many people, or go out to do as many things. But, I will still be here. I will every once in awhile marvel at the beauty. I will snuggle down into my comforter and blankets, gather my animals around me and smile as I drift off to sleep. (Think about it, when you freeze to death, you basically just go to sleep.....I had heat stroke once...it wasn't pretty!!!)......but no, I just mean go to sleep all toasty warm in my bed.

So, let the fall begin. The seasons change and so do I, and just like the winter with it's harshness and beauty, I find myself sorting through the winter in my soul, with it's harshness and beauty...there is something to be said for hibernation.

Happy Fall Everyone......

Creativity is the Word..

Good Morning to everyone. I haven't written for awhile, partly because I have not been feeling good, but also because I have been trying to work around that not feeling well. So, I don't really know what is going to come out today, I decided to just do a little stream of consciousness writing....it may be interesting???

So, one of the topics I have been wanting to write about it creativity. I am so thankful and grateful that I got this gift times ten. I believe creativity is what has pulled me though this illness. I seem to be creative in almost everything I do. The other day, I was feeling pretty good, and on the days I am feeling good, I like to use one of my creative talents, cooking. So, the pictures above are a plate of my fried green tomatoes, with prawn and raw cow milk dill cheese. I love to have fried green tomatoes in the summer. My version is a little more healthy than the traditional, and they are if I don't say so myself, to die for! I don't deep fat fry these, I saute them in olive oil. I used cracker crumbs, made from rosemary crackers. They were delicious. I am trying to eat a diet that concentrates on reducing inflammation. It is basically the Mediterranean diet. So, part of my creativity is used in cooking meals that are good, nutritious, and will hopefully help the pain decrease. One of my new favorite things to do, is to think of a dish such as bagel and lox, and figure out how to use the basic ingredients to come up with something completely different. For this, I used brown rice and quinoa as the "bagel", and into this I mixed smoked salmon, dill, red onion, capers, and a few sun gold cherry tomatoes cut in half. Then I make a sauce (cream cheese), with olive oil, lime zest, lime juice, and a little creme fraiche. I also add just a tiny bit of agave nectar. Good for me, and good to eat too!!!

So, cooking is how I use my creativity, especially on the days I feel pretty good. I also included a photo of the Plainfield Co-op where I do my shopping. I feel very lucky, as this photo is taken from my front door. The Co-op is the blue building. My other goal I may have mentioned in other blogs, is to do a little exercise every day. I used to have a goal of hiking the Appalachian Trail, then I down graded that to the Long Trail, then I thought well maybe Spruce Mountain (a local mountain peek, and nice hike), and now, I try and I am not always successful to walk to the co-op everyday. While this is sad for me, to watch this progression of the illness, I am very grateful that I am still walking to the co-op, but even more wonderful, is that I have this beautiful place, filled with healthy, organic, local food right across the street from me. And what is even better than that, are the workers who I get to see every time I go there. And, the community members that shop there are also pretty great. It is my touch with human contact each day, and I think that is important. So, I feel very lucky to have this little business across the street. I also feel extremely lucky that I can still walk over there, without a walker!!!

The reason I haven't been writing is a good one. I have been finding creativity and partaking of it's healing potions. I have also been creating art, and I even got out the mandolin and played with that a little again. I have a goal, and that is even if this illness is trying to take me down, cause me pain in every little place in my body...well, I am going to fight back with creativity. It is my weapon of choice. I gladly take up a little creativity and mix it with a little creative energy and come out with the wonderful elixer of pain distraction. It doesn't always work, another reason I have not written is I have been laid low with pain. But, I don't want to talk about that. I am tired of that subject, and tired of that feeling.

I have also been visiting my lovely owlbox. Unfortunately 2 of the owlets have died. I wanted to do a tribute to them in this blog, but I couldn't get the picture I wanted to use to load. I did include it on my FB page. But, another pain distraction I have been using is taking screen shots of the owlets. This is so much fun, as they are like little prehistoric looking, feather covered softballs with tiny little wings....and such humor. I get hours of pleasure doing this! I hope to share some of these here with you, and especially on FB.

So, there you have it, again...not a great piece of writing (I will once again just to write), but if you are someone who is in pain, who feels like life is over because everything you dreamed of doing is no longer within reach, well, I am hoping you too can use some creativity to make this illness and/or chronic pain a little more bearable. I hope you too can cook up something that helps you feel better (yes bad pun), and that you can find something to do that makes you feel like you are still learning, and giving back to this universe we live in! Namaste

disability awareness

I just had a most unpleasant experience, although it didn't directly involve me. As most of you know, I am a faithful follower of a family of barn owls in San Marcos, CA. This is a web cam, and on the side of the cam window is a chat. I love this place, as I watch the owls which are at times very amusing, always entertaining, and educational. I have met some wonderful people in the chat, some I know will be lifelong friends. These people come from all over the world, there are millions watching, and quite a few that chat. Usually, the chat is fun, funny, informational, and for me very supportive. There are a few rules we are asked to follow in chat, one being no caps, as that is considered yelling.

Well, here in lies the rub. I know, from being on other sites where people with disabilities frequent, that using caps is acceptable for the visually impaired. Tonight, a person (we don't know if people are male or female if their screen names do not imply, so I am just going to say she) came on, saying she was new, was visually impaired and wanted to know if she could use caps. Let me also explain here....there are people we call mods who are the people who make sure that people are following the rules. They regulate and sometimes "police" the chat room to make sure that it remains "g" rated, and friendly etc. Then there are the MODS, who are the chatters, named MOD for Molly Obsessive Disorder. Ok.....

So this person asks if using caps are ok, and a few of the MODS or chatters answered with: This person is lying, and is an attention seeking troll, as if they could not see, why would they be in a chat room. or if you can't see, why do you need to cap only yours, that does not make sense, you should know what you are typing. or and this one really got to me....."we are not a regular chat, we are family, and if is a choice to be here" OMG!!!!!

First, just basically....these MODS who responded in that way have no say over the rules in the chat room anyway....it is between the mods and the person who posted the simple question.....that being said:

I am sooooooo upset. This is just another example of how people with disabilites are treated every day. I am upset with myself too, as I just basically said that those comments made me sad, and upset, and should not have been made.....but then I left. I just felt like if i stayed in there, I would end up getting kicked out. I know I would have started a chat war, and I don't want to do that. I did go to Molly's site on FB and write about it there. And I am writing here. Why are people so insensitive? Why can they not see that what they are basically saying is: we don't accept you, because you are different. Where is the love people? where is the love?

I know, I am more sensitive to this because of what I face everyday. I actually had someone tell me that I didn't look like I needed my disabled parking plaquard. I got out of my car, the person looked at the plaquard and then me, and said..."Are you using someone elses car? I answered no. Then he said..."well, then you must know someone with a disability". Yes, I tried to explain it to him, but he just shook his head and walked away. I already wrote about the pharmacist.

I go onto the owl web site, because it is a great distraction from my pain. I love watching the owls and chatting to people all over the world. It takes my mind off of my life, my pain, and helps me laugh and feel good. Should not people who have visual problems be afforded the same benefits? Just because someone, somewhere, decided that all caps in a chat room means yelling.

Once again, I am not writing something that is a wonderful piece of literature, it is just a rant. But, I hope that you read this, then go out and take this rant into the world. Do something that helps people become aware of the world from someone with a disabilites view. The world is hard enough to get through. Compassion. We need so much more of this. Is it possible to teach it?

I wonder if those chatters realized what they were saying, or if they are sitting there smuggly thinking that they smashed another troll. HOw can anyone be so judgemental? My heart is hurting....are there any pain killers for that?

Never Heard Of That?

Ok, another blog that is basically a rant, as I have to write about this or I will just wallow in it, so may as well get it out.....I can't sleep. I have had sleep problems for many years, but this is a little bit different. Yes, no sleep can make for some interesting thoughts and behaviors. Sometimes it is even funny....like when you fall asleep while writing to someone in chat.....but it isn't all funny.

I have these lipomas all over my body. The ones that hurt the worst are on my upper thighs/hip region, my rib cage, and my abdomen. These things cause excrutiating pain. They burn, sting, feel like a deep bruise, and basically don't let up. They are worse when they are first forming. Then, they seem to come and go, or more realistically, they swell and hurt and then go down and don't hurt as badly. But, they are a literal pain!

The worst, and what is causing me to come here and cry, is trying to sleep. I can not find a comfortable position to save my life! I have always been a side sleeper, almost all my life....I can no longer do this. When I am so totally exhausted that I do fall asleep, I tend to roll onto my side and then YOWZA....I am wide awake because it feels like I have been stabbed. The lipomas in my upper/outter thighs (hip area), are very painful to the touch.

I also have these little pockets of fat filled pain on and around my lower spine. (where arthritis is also present). So, laying on my back is also one exercise in futility. I can sometimes find a partial sitting up position to be somewhat comfortable. This is the way I can usually fall asleep, and why I tend to fall asleep while I am on the computer, or watching TV. But, and maybe I should say butt.....there is also tailbone pain. When this strikes, it absolutely takes my breath away. It feels like vice grips are squeezing my tail bone. I don't know if this is caused by lipomas or if it is something else, but this pain would have me running to the ER if it lasts much more than an hour....luckily, it hasn't, or has responded to pain killers.

Ok, so I can't sleep on my side, or back...well......the lipomas around my rib cage, and lower (mostly) and upper abdomen area are also screaming their little fatty tumor heads off. The other day I was visiting yet another specialist, this one the gastroenterologist....and he was doing his exam and said "Oh, it feels like you have a hernia, has any one told you that?" I told him I thought it was a lipoma, as they are everywhere if he continues to feel around....he did, while I bit my tongue and winced. He just looked as me with a strange kind of puzzled look on his face. I told him what I think these are, and he said "Never heard of that". Well, whatever, but these are what keeps me from sleeping on my stomach.

The other day, I went to a PT. I thought maybe a combination of pool therapy, and a walker may get me able to walk more, get a little more exercise. So, in order to do that, I was subjected to more poking and prodding. He feels all these lumps, and says "Hmmm, what are these?" I tell him and he says...."Never heard of that". I tell him that I know that strengthening muscles are usually the answer to help with pain, and that may be the case here....but what really hurts are the lipomas in my thigh area that seem to be pulled downward by gravity when I am upright and walking. He agreed that the pool is the best place, and wants me to hold off on the walker. I am ok with holding off on the walker, and I LOVE pool therapy.....but, will it make the pain of the lipomas go away? Not sure, and of course, since he had "never heard of that"...how can he answer that.

To make a long story short, since I have been in the hospital, I now have 3 rare illnesses. One may have cleared up following knee surgery a few years ago.....that would be great, as apparently PVNS is difficult to get rid of. My diagnosis after being in the hospital are some kind of myositis, and rhabdomyolysis. I don't know that much about the latter, but the former is....you guessed it...rare! But, most of these specialists have heard about this diagnosis.....

Ok, now here comes the diagnosis that no one knows about...Dercum's Disease. It is the fatty tumors, the lipomas, and possibly inflammation in the fat cells. I wish it would be easy to lose weight and make it go away, but it doesn't work that way.....so, since no one really knows what it is, no one knows how to treat it.....no one is coming up with any way to help me with it....

There is one doctor in the US who researches and understands this disease. She is in San Diego. I am trying to figure out how to get to San Diego to see her. It isn't easy with no money. But, where there is a will, there is a way.

But until then, I guess I will continue to toss and turn trying to find a comfortable way to exist in this world....yes, I didn't say sleep, as it is not just trying to sleep, it is trying to live.....I toss and turn even when standing up! I will continue to have to toss away and turn down invitations to parties, get togethers, movies, etc.......I will continue to have a social life that is mostly on the computer and phone. (thank God for those friends who have stuck by me, and who call and keep in touch with me. I am an extrovert, I like to be around most people, this forced isolation makes it difficult to remain positive and content in my world. The adventure of never knowing how I am going to feel each day, makes planning anything in advance almost impossible).

Until then I will continue to try to forget about those comments, those experiences like the one at the pharmacy...because the only thing I have found that makes my life a little more tolerable is narcotic pain meds. There are two kind of responses when people find out I am on narcotics....either they hold out their hand, or they become judgmental. That makes me want to cry. (Again, I thank God for those friends who understand, and do not challenge me, or suggest a better way to deal with pain, as in the many years I have been dealing with this, there really isn't much I have not already tried. The odd thing about this illness I have, different approaches work, for awhile, then seem to quit. I have tried naturopathic, chiropractic, homeopathic, energy healing, many many different kinds of medications, meditation, physical therapy, prayer, art therapy, talk therapy including CBT, EMDR, narrative, and other approaches, and massage.....whew....and I am not sure that exhausted that list).

So, I will continue to try to educate, to explain, to ignore, those who can't possibly understand what it is I am going through, because they have "never heard of that".

another art piece/blog completed...even while sleeping...

I finally finished another art piece. This one took me forever to do, and I am sorry, but trying to get a good photograph of this one, with my little digital camera, well......

This is another yarn painting, except for the most part it is done with 2 strand embroidery floss!!! So, it took me quite a while to finish. It is about 6" X 2 ". I coated some mat board with bee's wax, and pressed the floss into the wax. The bottom portion where the tree routes are growing are small delicata beads.

Now, I am hoping I will find the time, energy, and renewed enthusiasm to explore the oil paints.

I probably should write something pithy or interesting, or at least a little entertaining here today, but I am just too tired. I have been pretty active, at least for me in these past couple of days, so today, I am just allowing myself to do whatever it is I feel like doing.

I just made a very good grain salad. This has taken me 3 days to make, not that it is that difficult but mostly because I am a space cadet. (Ok, I can call it fibro fog, but let's just go with space cadete). First, I was going to make brown rice and quinoa for the grains, but I ended up throwing steel cut oats in the rice maker, rather than the quinoa. So, I got creative and decided to make a breakfast cold grain salad. So, I went over to my lovely coop, and bought some local blueberries, and mixed the grains, with the blueberries, and a little agave syrup. Yummo!!! So, that mistake has provided many breakfasts to come....

Yesterday, I made the rice and quinoa, but i just didn't have the energy to complete the rest of the salad. What I had the energy to do, was go to the physical therapist appointment (no walker for me, we are going to try the pool first, which actually I am very happy about)....He said he understands my reasoning that with a walker I would be able to get out more, and then have more exercise, but as I told him, I much more enjoyed his reasoning that maybe the pool would strengthen me more so I can walk further with less pain. I am down with that!!! Then I had to go pick up my "camp site" from the previous night of meteor watching in a friend's backyard. (It was so dewy out, that everything got really damp. So, I snuggled down into the sleeping bag to stay dry and warm, basically slept most of the good watching time!!!), But, between the PT appointment, and the picking up of the "camp"....I was exhausted, so the salad had to wait....

Then today, I woke up feeling pretty good (well, when I say woke up, ummmm, I fell asleep for about 2 hours, after talking on the phone for about 2 hours in the middle of the night, and then hanging out with my little owl friends for another couple of hours.....but, I finally decided to finish my yarn painting, and my "deconstructed bagle and lox salad" Because I am trying to follow a diet that is good for reducing inflammation (and hopefully pain), I have had some fun being creative in the kitchen. (I always have been a good cook, but now I am cooking with a purpose)....so for those of you with DD...I think the following dish is close to the diet prescribed by Dr Herbst.

I mix brown rice and quinoa, add tomatoes (just a few grape tomatoes because of the night shade thing), red onion, dill, capers, and flaked smoked salmon. I add a sauce of lime zest, olive oil, agave syrup, and lime juice. I also put a little bit of creme freshe in there. Again yumo!!!

So, today I have just about used up all my spoons (energy) with these activites....so I am about to return to take a nap.

In fact, while attempting to proof this, I have fallen asleep and woke up 3 times, with the laptop open and waiting for me to wake up and hit send.....sorry, I know this is poor writing, and possibly disjointed....i shouldn't have, but I did just erase the gibberish that I apparently typed while sleeping.....sppppoooooooooooooookkkkkkkkkyyyyyyyyy. I was going to write a whole blog about creativity, how it happens in all areas of my life, even cooking....but I will save that for a day when I am awake and have fully functioning brain cells (well, fully functioning in a way that will make me sound like I know what I am writing about)...LOL. So, back to dream world with me. Enjoy if you will, the art and the salad.....more later!

madder than a wet crip!

Excuse me dear readers but here is where I am going to merely vent and rant and rage against judgmental people!!!!

As many of you know, I have been having problems with lots of pain, and it has been increasing lately. The last prescription my doc wrote, he wrote for less than I had been taking of the pain meds. So, I called and they said to take what I had been taking. So I did. Of course that meant that I ran out earlier, but my doc just wrote me another script to cover that.

This has happened before, and I have taken this script to the pharmacy I have been using for 10 years, and the kind pharmacist who owns the business always fills them. However, he has his fill-in pharmacist who is clearly prejudiced against those of us on narcotics. I have had trouble with him before, but today took the cake. I will also say, because I worked in a place where people with pain came, I have heard similar stories about this pharmacist....

So, today, my legs are hurting so badly, that I am using the dreaded cane, and even that is not helping much. So, when I went to pick up the prescription from my doc's office today, I asked for them to write an order for a walker, so when I go for my P.T. eval soon, they could fit me for a walker. This is way beyond my capacity for thinking that I am ok, or what may be called denial. I hate to think that this has progressed to the point that I need that much assistance walking, but it has. It sucks, and I don't like it at all. So, I was leaving my doc's office, with script in hand, already feeling yucky because I finally admitted to myself it has come to this point......but, relieved that I was going to get the meds that will help the pain some...and....

This pharmacist comes out from behind the counter, sits down next to me and says "when did your doctor say you could have more, because he wrote this for 3 a day", to which I said "what do you mean?" He just kept looking at me, with no further explanation. I said, "yesterday I guess." Since that is when the script was written. He said, "I can't fill this, you should have plenty left if you just were told yesterday that you could take 3 a day". I said, "no, he told me I could take them weeks ago, but he wrote the script yesterday as that is when I was going to run out." The meanie pharmacist then says..."oh sure, now you are changing your story, there is no way I am going to fill this." I got kind of upset and said that the regular pharmacist fills them with no problem, and he says "I doubt that". I said "call him". He once again said that he was not going to fill this, and it wasn't his problem. I got mad, but I thought was fairly well controlled, and said, "You know, I hate to say it, but you have a reputation for doing this, and when people are in chronic pain, it is hard to hear this and have to argue with you". He got mad and started telling me that he didn't have to listen to my opinions about anything and that I was out of line. It just got worse from there. I didn't know what to do, I asked him to call the doctor's office, but of course he would not do that. He said to go across the street to the other pharmacy. All I could think about at that point, is how much it was going to hurt to have to get back in my car, and walk to the very back of another pharmacy. I left, but realized that there was maybe a way he could see that I was telling the truth.

As I walked back in the store, he came walking out and met me with his arms crossed against his chest, and with a very stern look on his face. I said "if you look back in your records you will see that the prescription before this said take 3/day." he disagreed and said, "no, it says take 2/day"...I said go back one more, and you will see it says 3/day.

He told me that I had now changed my story yet again, and that now I was raising my voice. I told him that I would be calling the owner of the business and reporting him and letting him know that he had unfortunately lost a good customer because of this guy's attitude. He came back at me with he had already reported me as a drug seeker, and it was clear to him that was what I was, as if I was truly in pain, I would not be so upset. He kind of guided me toward the door!

I went across the street to the other pharmacy, where I did have to walk to the very back of the store, which by then I was almost in tears from the pain. The pharmacist asked me if he had checked the insurance and if that was who turned me down. I said I didn't think he had, as he really didn't have time to check. I also told her, I had issues like this with him before, and had come to this pharm and they filled them with no problem. As I expected, they filled it with no problem.

Ok, long story.....but, I just want to point out here...and I know that many of you who read this blog have pain issues, so it is like preaching to the choir, but it is bad enough to have to endure this kind of pain everyday. I don't think we should have to also put up with professional's attitudes and personal prejudice. Because of his attitude, I am in more pain than I was, so now the pain killers that I got will not work as well. Not to mention that emotionally, I am very upset, so that does not help my condition at all. why oh why do we have to be treated this way? (I think that is a lyric).

I am writing a letter to the business owner, and CCing it to my doctor. I will explain why he has lost my business, and that I think anyone who has chronic pain should not go to this pharmacy. It is sad, because the man who owns this business is sweet and kind and the techs that work there are also very kind. It is just this one judgmental man, who claims if he would fill that script they would take his license away. I told him that didn't make sense, as my doctor wrote it....to which he says....oh doctors write all sorts of things they shouldn't. (yes, I will put that in my letter). Huh? they have license too! And, I know for a fact, that if it was written in a way that was not allowable, my insurance company would have refused it. And way beyond any of that, and what is what this all comes down to....is my integrity! I know I have not abused this med. I know that it was taken as prescribed...or at least as my doc knew I was taking it.

One thing about me that I know, is I hate to be falsely accused of anything. It makes my blood boil when that happens. I am sure my voice did raise a little, but it was not because i was a drug seeking addict who was lying and changing my stories to try to get drugs I was not supposed to have......it was because I am a person in non-relenting, retractable pain, who could see that I was going to have to take even more painful steps to get a medicine that I need, and was rightfully prescribed. In one fell swoop, this jerk (sorry I was going to try to be above board in the blogging of this event) not only called me a liar, but also my doctor. I bet, this guy has a God complex. Well, in my world God is loving and kind. This guy is a prejudicial, biggoted, judgmental jerk! So there!

the bed intruder

If you haven't seen it already, go to youtube and watch the video of a young man who's sister was almost raped, until he came into the bedroom and chased the intruder out. This video has gone viral, and not only that, people have used it to do songs and comedy routines. The man in this video is from what looks to be a housing development in Hunstville, AL. He is black, and is not shall we say, well spoken. What he is, in my mind is someone who is emotionally charged after doing a good deed, some may call a hero. But what I think gets lost in all this, is the reason he was on the news in the first place, a woman was almost raped. That is not funny.

I find it even more interesting that the number of opportunities I have had to watch this video on FB comes from men's pages. On each one, I have taken the opportunity to write my take on this video. One of the men who posted it, put at the top of his, "you have to see this, it is funny". I watched (just the news bite, not the resulting songs etc) and became ENRAGED. Why would anyone think that rape was funny? Most of the responses on these postings agree, and come from all women. One woman said she thought that it was just about creativity and there is too much seriousness in this world, and we need to lighted up, and realize it was just humor. I still fail to find the humor in this situation.

Another person who posted the video, also posted the response from NPR which reports that this young man who was in the video has turned this into a power moment for himself. The authors of this article agree, that if you took this same situation, put it on SNL and used actors, would it be funny? They think not, they think there would be public outcry to as they put it "excoriate" it from tv land. I agree. They also interviewed some people who pointed out that while this young man was maybe not the best public speaker, and some feel was exploited by the news station, his impassioned statement was done without swear words, and other stereotypical "urban" discourse. The comments posted to this article were great. Most agreed that maybe the news station deciding to broadcast this, or the resulting viral web videos, and parodies, brought out something unintended, it allowed this young man, and his sister to give voice to a social condition, that many of us turn our head to. No matter what position you take on this, whether it be from a social/racial/economical viewpoint, it brought it into the light of day.

My response on both of the FB pages, who were posted by men, was to thank them. Yes, I thought the video was horrible in that it was supposed to be funny, but at least it gave us an opportunity to do some old fashion consciousness raising. Back when I was the director of a rape crisis center, we always said that men where the only ones who could truly help to stop rape. We invited them to start their own programs to help men help other men in an attempt to stop this horrible power abusive act. In the video, the young man says and I am paraphrasing "snatch up your sisters, daughters, wives, mother, and husbands, cuz everyone is getting raped out in here"....it is true, it affects everyone. Not only can men be raped, but if they ever love a woman who was raped, they are affected.

I still can not see how the offshoots of this video can be seen as creative. I will admit, I haven't watched them. I read that there is one that is done well, and with taste and shows the heartfelt plea of the young man, to find the "bed intruder", but to think any of it can be funny, still breaks my heart. I have said here many times, I love to laugh. I find humor in almost anything...but not this. Human suffering can be looked at through a humor lens, comedians do it all the time. Sometimes, not in very good taste, sometimes in a thought provoking way...but this....no, just not funny. I think, or at least I hope, the majority agrees with me on this one.