I haven't written for a long time. I wish I could say it was because I was feeling so good that I was out doing something, but alas, that is not the case. Although, I have been busy and have much to write about. I have no idea where this writing will take me, but I just need to get some things out of me, so you get to read what I need to dump.....lucky you!
I guess the place to start is that I finally got a diagnosis. After I can't even count how many years of knowing something was wrong with me, I now know. As many of you know, I have been diagnosed with Fibromyalgia, and before that, Chronic Fatigue. However, neither of these illnesses seemed to explain everything. So, I did lots of searching and came up with a possible diagnosis of a rare illness called Dercum's Disease or Adiposis Dolorosa. When I read about it on the net, it just seemed to fit like a glove. So, I discovered that there was a doctor in San Diego who was the leading expert in this disease. I guess the universe was in agreement with me, as I had a number of miracles that led me to her office in San Diego. I would never have been able to afford this trip, but as I have written on Face Book, and maybe here....3 angels came to me, and financed this trip. I have thanked them profusely, but here it goes again: You are my angels, my friends, and I only hope that I can pay forward someday the kindness and generosity that you bestowed upon me. This kind of generosity is really rare in today's world, but all of you stepped up and made my trip possible....not enough words to explain how I feel, and the deep deep gratitude I have for all of you. Bless you all!!!!!
So, my trip to San Diego to see Dr Herbst revealed that I have Dercum's Disease type II, and lipa-lymphadema. Both of these have no cure, and are progressive, however there are ways to slow down the progression. Diet, meds, suppliments and treatments are in my future. When I returned and told my primary care doc, he shook my hand and told me "well done" for sticking with it and coming up with a diagnosis he had never heard of. As one of my angels, Bev says...."mirror mirror on the wall, we are the rarest of them all"!!!
It does feel good to finally have an explanation for all this pain, fatigue, weakness and a host of other conditions that go along with this illness. However, it is also a diagnosis that is not easy to hear, as while it explains the symptoms, it still doesn't cure me. Dr Herbst has spent many years researching fat disorders but because it is so rare, she does not have much money funding her research. I would like to say now, that anyone reading this.....when my birthday comes up in August, I will be asking for donations to Dr Herbst and the organization FDRS (Fat Disorders Research Society), so if you want to donate to them at any time, that would be great! I want a cure!!!! Hopefully, on my birthday, I will be asking for donations, so please...save your pennies as I would love to donate quite a bit to her to help her further the research. She is an amazing Dr. She has dedicated herself to this subject. And, she is very nice and appears to go the extra mile for her patients. I feel so lucky to have her as one of my medical team.
Ok, so I am now diagnosed, and one of the things that I am supposed to do is reduce stress in my life. Well, that is not going to be the case for a while. My mother has been diagnosed with probable lung cancer in both lungs, and she is currently in the hospital with what they are calling "failure to thrive". (I say probable as she does not want any further tests, but the doctor said it looks like lung cancer on the cat scan.....and the diagnosis of failure to thrive is basically because she has given up taking care of herself. She was very dehydrated. I am hoping that now she is in the hospital she will get a team of medical/social workers around her that will help her) She does not want me to tell anyone about this, but sorry Mom, I need support too. I don't know what to do. OF course I want to be with her (she is in Montana), but to do that, I would have to pack up my house, to either rent or sell it. I don't have the energy for this. Along with that, I could bring my shih tzu out there, but not my beloved dingo. I would have to put her down. Hard decision. I know some of you out there would probably not think it to be a decision, but my dog has given me 15 years of unconditional love. My mother and I just started getting along about 3 years ago, and even though I would like to say that was unconditional, it isn't. I know, I am a horrible person for writing this, and I probably should just keep this to myself....but I am tired of pretending everything is ok. I won't go into the details here, but lets just leave it at my childhood and youth were not all that happy. I was very good at pretending, so if any members of my family are reading this....sorry. I have forgiven, and that is all that needs to be said.
So, what do I do? As I write this, I can feel the guilt, the anger, the sadness the emotional whirlwind building up. I am totally overwhelmed with the want to be there with her, and the reality that I am sick and do not have the energy or financial ability to go out there. I am sooooo stressed about this.
The trip to SD was very hard on me, although there was very little stress associated with this trip, just the travel took so much out of me. And then I come home, and get the call from my mother that she was just waiting for me to get home before she went in the hospital. I don't know why, but the mother that has been around, and I have been enjoying for the last 3 years....has reverted back to the mean mama of my youth. I find now I am basking in a whole lot of mama drama, and just do not know how to cope with this.
Of course, my therapist is going on vacation next week.
Well, I just realized that sitting here writing is causing me emotional and physical pain, so I will quit for now.
I wish I was an ostrich.....so, I guess I will continue to write, as that usually helps me to process and figure out what I need to do. Any suggestions are welcome....
Sunday, February 13, 2011
Tuesday, January 4, 2011
overheard on my way home from the store...
Well, it is the new year. I have always looked forward to new years with a measure of optimism and hope....but this year, I just can no longer find that within me. Only for my health and financial situation, in all other matters, I have lots of hope and optimism.....but I am pretty sure this blog will not reflect that.
Today I was food shopping when I heard from the other isle, "Honey, that is not a necessary food, we can only get what is necessary now" The isle they were in was not candy, or sugary cereals, or soda (this store doesn't even have soda).....the isle they were in was the bulk beans and rice. The child was wanting black beans...yes, the more expensive variety, but none the less....should not be looked at as a luxury item. I happen to know this family, I know they are struggling...and it makes me sad. Both mom and dad work, and rather decent jobs. Just a few years ago, they would be considered middle class by Vermont standards....now, their basket had a few items that looked like maybe it was for a soup. The veggies came from the half price isle. This family, like so many others, make too much for assistance, but not enough to live on.
I came across a friend who I had not seen for awhile. He told me about how he was in trouble because his parent became ill. He makes very good money for Vermont standards, but his parent was elderly and the pension they were promised was pulled away from them, along with the life long health insurance program. They had only medicare, but it did not cover all of what this illness cost. His parent has moved out of their life long home in another state, to move to Vermont and live with their son. This is causing a huge burden on the son, who loves his parents, but looks like the stress has taken a toll.....sad.
Of course, I also was telling people my story. It is also sad....and one I am sure I have written about so does not need repeating. I just put my last bit of money that I had (and really could not afford to as it should have gone for other bills) into my heating oil tank. The $700 I paid out, only put in 1/2 a tank, and is not enough for the minimum delivery for the next fill (which does not fill it)...then I don't know what I am going to do......I could go into the details of why this is so hard, and how keeping my thermostat at 50 to try to make my oil stretch longer...thereby causing me increased illness...but hey, you have heard all that, I won't bore you.....but it sucks.
And then, as I was coming home, I overheard a man talking on his cell phone. He was telling whoever in a very sad and dejected voice, "I am too old to be this poor". I just wanted to cry. I know how he feels.
This is America. The supposedly richest country in the world. How did we get here? My mother, who has lived a fairly financially comfortable existence, is now for the first time in her life wondering where she will go if she can no longer afford the retirement place she lives....she is 91. She has outlived her savings. That is too old to be wondering what is going to happen to her. I feel so bad, I can't help her. I get stressed over that. I get stressed over my financial situation........the number one way to halt the progression of my disease......live with decreased stress in my life. HA HA.
What are we going to do people? I know, many people say "but for God's grace, there go I", and shake their heads and feel sorry for those of us who are in these situations. I do appreciate prayers, lots of prayers.....but something else needs to be done. I write my representatives, both local and in Washington, I beg with them to help people like me. I just heard that our new governor has said he is afraid he is going to piss off those who put him in office, as what needs to be cut are many of the services. How can this happen? What is the plan? Who cares? I think that last question has a double meaning. I am asking who will help us, because who will care enough to take care of those of us who are too sick, too weak, too down trodden to fight for ourselves. But then there is the other meaning....I am afraid it is the one that has more correctness to it....in who cares? No one cares, no one will do anything.....
I think so many people are on the fringe of losing what they have, that they can't even think about helping out those of us who have already lost it. Then there are those who are hiding amongst their money, so afraid that if anyone knows they have it, it will be taken away from them (I don't think I personally know anyone like this, but I can imagine they are out there).
If I had energy, I would think about starting communes again. Or at least some kind of intentional communities made up of those who can do things for one another. On the days I have energy, I use them to help other people. I know there are those out there who have this same feeling. They would like to do anything to help feel productive. I go across the street to my coop and do a little volunteer work. That is one thing I do. Unfortunatly, most of the time I do not feel good enough to be reliable. However, the workers there are wonderful, and they allow me to come and do what I can when i can. This is the way it should be.
I know there are other sickos like me who would give anything to feel productive again. To give back, to take care, to pay it forward. Although I would say overall 2010 sucked, I would also have to say that I have been blessed so much by people I hardly know and their extreme generosity. That will always go down as one of the best things that has ever happened to me. So 2010 was not so bad when I look at this aspect of the year. There are good people out there, and I am blessed to know at least 3 of them!!! (I know more than that, but I am talking about the most recent miracle of friendship and selflessness). I only hope that I can pay this forward.
So, I am saddened. I want to do something. Please help me. Help me think of how I can support a society of people who are struggling. Good people. People who just had the misfortune of getting sick. Or, of having a large family they once upon a time could feed easily. Or of finding out that the place they worked all their life, and felt a loyalty to...has suddenly turned on them. This is happening all over.
So, I would like to suggest that you put aside those video games you got for Christmas, or reduce the amount of lattes and expensive coffee drinks you buy at those large chains....and put aside something for those who think that MacDonalds is now considered fine dining. Use your energy to dream. Dream of places and ways to help all of us who are in this boat. Write your Congress people and let them know you want the people of this country to be taken care of. (Don't forget the animals, they deserve our help too). Do something....please, just do something.
Thank you....
Today I was food shopping when I heard from the other isle, "Honey, that is not a necessary food, we can only get what is necessary now" The isle they were in was not candy, or sugary cereals, or soda (this store doesn't even have soda).....the isle they were in was the bulk beans and rice. The child was wanting black beans...yes, the more expensive variety, but none the less....should not be looked at as a luxury item. I happen to know this family, I know they are struggling...and it makes me sad. Both mom and dad work, and rather decent jobs. Just a few years ago, they would be considered middle class by Vermont standards....now, their basket had a few items that looked like maybe it was for a soup. The veggies came from the half price isle. This family, like so many others, make too much for assistance, but not enough to live on.
I came across a friend who I had not seen for awhile. He told me about how he was in trouble because his parent became ill. He makes very good money for Vermont standards, but his parent was elderly and the pension they were promised was pulled away from them, along with the life long health insurance program. They had only medicare, but it did not cover all of what this illness cost. His parent has moved out of their life long home in another state, to move to Vermont and live with their son. This is causing a huge burden on the son, who loves his parents, but looks like the stress has taken a toll.....sad.
Of course, I also was telling people my story. It is also sad....and one I am sure I have written about so does not need repeating. I just put my last bit of money that I had (and really could not afford to as it should have gone for other bills) into my heating oil tank. The $700 I paid out, only put in 1/2 a tank, and is not enough for the minimum delivery for the next fill (which does not fill it)...then I don't know what I am going to do......I could go into the details of why this is so hard, and how keeping my thermostat at 50 to try to make my oil stretch longer...thereby causing me increased illness...but hey, you have heard all that, I won't bore you.....but it sucks.
And then, as I was coming home, I overheard a man talking on his cell phone. He was telling whoever in a very sad and dejected voice, "I am too old to be this poor". I just wanted to cry. I know how he feels.
This is America. The supposedly richest country in the world. How did we get here? My mother, who has lived a fairly financially comfortable existence, is now for the first time in her life wondering where she will go if she can no longer afford the retirement place she lives....she is 91. She has outlived her savings. That is too old to be wondering what is going to happen to her. I feel so bad, I can't help her. I get stressed over that. I get stressed over my financial situation........the number one way to halt the progression of my disease......live with decreased stress in my life. HA HA.
What are we going to do people? I know, many people say "but for God's grace, there go I", and shake their heads and feel sorry for those of us who are in these situations. I do appreciate prayers, lots of prayers.....but something else needs to be done. I write my representatives, both local and in Washington, I beg with them to help people like me. I just heard that our new governor has said he is afraid he is going to piss off those who put him in office, as what needs to be cut are many of the services. How can this happen? What is the plan? Who cares? I think that last question has a double meaning. I am asking who will help us, because who will care enough to take care of those of us who are too sick, too weak, too down trodden to fight for ourselves. But then there is the other meaning....I am afraid it is the one that has more correctness to it....in who cares? No one cares, no one will do anything.....
I think so many people are on the fringe of losing what they have, that they can't even think about helping out those of us who have already lost it. Then there are those who are hiding amongst their money, so afraid that if anyone knows they have it, it will be taken away from them (I don't think I personally know anyone like this, but I can imagine they are out there).
If I had energy, I would think about starting communes again. Or at least some kind of intentional communities made up of those who can do things for one another. On the days I have energy, I use them to help other people. I know there are those out there who have this same feeling. They would like to do anything to help feel productive. I go across the street to my coop and do a little volunteer work. That is one thing I do. Unfortunatly, most of the time I do not feel good enough to be reliable. However, the workers there are wonderful, and they allow me to come and do what I can when i can. This is the way it should be.
I know there are other sickos like me who would give anything to feel productive again. To give back, to take care, to pay it forward. Although I would say overall 2010 sucked, I would also have to say that I have been blessed so much by people I hardly know and their extreme generosity. That will always go down as one of the best things that has ever happened to me. So 2010 was not so bad when I look at this aspect of the year. There are good people out there, and I am blessed to know at least 3 of them!!! (I know more than that, but I am talking about the most recent miracle of friendship and selflessness). I only hope that I can pay this forward.
So, I am saddened. I want to do something. Please help me. Help me think of how I can support a society of people who are struggling. Good people. People who just had the misfortune of getting sick. Or, of having a large family they once upon a time could feed easily. Or of finding out that the place they worked all their life, and felt a loyalty to...has suddenly turned on them. This is happening all over.
So, I would like to suggest that you put aside those video games you got for Christmas, or reduce the amount of lattes and expensive coffee drinks you buy at those large chains....and put aside something for those who think that MacDonalds is now considered fine dining. Use your energy to dream. Dream of places and ways to help all of us who are in this boat. Write your Congress people and let them know you want the people of this country to be taken care of. (Don't forget the animals, they deserve our help too). Do something....please, just do something.
Thank you....
Saturday, November 20, 2010
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?
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?
Saturday, October 30, 2010
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!
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!
Thursday, October 28, 2010
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......
Monday, October 25, 2010
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.
Saturday, October 9, 2010
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!!
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!!
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