Nov. 24th, I called my primary care doctors office, to get my results for my peripheral arterial disease test, that I had at Albany Medical Center, on Nov 19th. Of course his office said that they didn't have it and told me to call the place I had the test done. So, I call over to that dept. in the hospital and they transferred me to their lab. The person at the lab said their computers were down and asked if I could call the following day to get my results.
The next morning (Nov 25th) at 8am I called the lab and asked for my results, which they had, but I was informed they could not tell me my results, that only the doctor who ordered the test (my primary care doctor) could otherwise it would be illegal. I would just like to say ok, fine, whatever, but seriously it was my test and my legs, so why the hell can't someone just tell me my results? So, she asked for his fax number, which I didn't know and so, she took his regular number and said she would call to get his fax number.
After I got off the phone with her I realized he would not be open till 9am, so I called his office to listen to his phone menu and see if his fax number was given, it was. I then called her back to give her the fax number. She said "Oh, I am glad you have it, because I called and he was closed" If she had just listened to the menu it gave an option for the fax number, but either way I am glad I called back and she faxed it over.
I forgot to mention I had been up all night because my sleeping has gone off track again. So, at 9am I called my doctors office only to hear the answering thing says they open at 930am, so I waited. At 930am I called back and the receptionist answered and I gave my information and why I was calling. She said they just got the fax and soon as a nurse and a doctor looked it over they would call me with my results. I asked her how long it would be because I had been up all night and really needed to get to sleep. She said "as soon as they look it over they will call you."
After I got off the phone I was worried that it would take them hours to get around to it. I was lucky and someone called me 5 minutes later. My results were normal. I am happy that I don't have peripheral arterial disease, but at the same time my feet and lower legs are still getting ice cold, sometimes so cold they hurt. This started in July 2009. So I assume next time I see him and bring it up again I will just be told "well your test is normal" and I will have to say "I know, I am glad, but my feet are still cold."
Sunday, November 29, 2009
Saturday, November 21, 2009
You are trying to get to lunch
I usually don't repost something else I found on the internet, but this woman's message really touched me and I felt for her and wanted to share.
"Dear Dr. Batistte,
I heard you talking about me in clinic today. You forgot to shut the door all the way. I wasn’t surprised by what I heard, really. I could tell by the look in your eyes that you didn’t like coming in my room. I guess I thought you just didn’t like your job, but now I know, you just don’t like me. I wish that didn’t bother me, but it does.
Do you understand that what you see when you enter my exam room is merely a snapshot of my life? Sure, you see a frail girl on oxygen who is angry and bitter. Do you think that is who I am? I suppose you do. What else would you think of me since that is all you know?
I am angry and bitter. I am angry that I am dying and yet I still have to come to clinic every month. You have told me that there is nothing you can do for me so why do you make me haul me and my oxygen tank all the way from my home to the hospital anyway? Is it so you can keep up with my statistics? Well, I stopped caring about my statistics months ago. I wish you would just leave me alone and let me be in peace.
Instead, I follow your orders like a sheep and show up here every month, tired and irritable. I heard you call me “difficult”. I know you have written me off as a problem patient. I would guess that you have even labeled me the biggest label of all : non-compliant. Is your perception that limited? Your compassion so shallow?
Perhaps I am a problem patient. If you’d like to call me that, I won’t dispute you. Where I have a problem is when that becomes the beginning and the end of my definition.
I am a problem patient and I am a survivor.
I am deep and I am materialistic.
I am fun and I am too serious.
I am compassionate and I am judgmental.
I am fulfilled and I am empty.
I am surrounded by loved ones and I am lonely.
I am everyone and only myself.
I am just like you and nothing like you.
I am sorry that I have made your work day a little harder, a little longer. I am trying to live with terminal illness and you are trying to get to lunch. Our agendas are so different.
You have hurt me today with your overly simplistic label of my state of mind. The problem is, your label is seen as a scientific fact. I mean, it went in my chart, didn’t it? That makes it real and concrete.
I heard you behind that crack in the door say that there was nothing you can do for me. I heard you describe how difficult I am and that makes it impossible to work with me. I wish you knew how wrong you are. We wanted different things from each other, you and I. You wanted a smile, perhaps? A warm welcome? I wanted understanding. Today, neither of us got what we wanted but it didn’t have to be that way. I wish I had never heard you behind that door.
I am angry with you. I don’t have much warmth in my heart for you. The only kind thing I can say today is that I hope you never have to face the same kind of one-dimensional assessment you have placed on me. It is true that there is little in this world that hurts me more than being so misunderstood.
Truthfully Yours,
Tiffany"
The original post can be found at http://stanford.wellsphere.com/cystic-fibrosis-article/truthfully-yours/338044
"Dear Dr. Batistte,
I heard you talking about me in clinic today. You forgot to shut the door all the way. I wasn’t surprised by what I heard, really. I could tell by the look in your eyes that you didn’t like coming in my room. I guess I thought you just didn’t like your job, but now I know, you just don’t like me. I wish that didn’t bother me, but it does.
Do you understand that what you see when you enter my exam room is merely a snapshot of my life? Sure, you see a frail girl on oxygen who is angry and bitter. Do you think that is who I am? I suppose you do. What else would you think of me since that is all you know?
I am angry and bitter. I am angry that I am dying and yet I still have to come to clinic every month. You have told me that there is nothing you can do for me so why do you make me haul me and my oxygen tank all the way from my home to the hospital anyway? Is it so you can keep up with my statistics? Well, I stopped caring about my statistics months ago. I wish you would just leave me alone and let me be in peace.
Instead, I follow your orders like a sheep and show up here every month, tired and irritable. I heard you call me “difficult”. I know you have written me off as a problem patient. I would guess that you have even labeled me the biggest label of all : non-compliant. Is your perception that limited? Your compassion so shallow?
Perhaps I am a problem patient. If you’d like to call me that, I won’t dispute you. Where I have a problem is when that becomes the beginning and the end of my definition.
I am a problem patient and I am a survivor.
I am deep and I am materialistic.
I am fun and I am too serious.
I am compassionate and I am judgmental.
I am fulfilled and I am empty.
I am surrounded by loved ones and I am lonely.
I am everyone and only myself.
I am just like you and nothing like you.
I am sorry that I have made your work day a little harder, a little longer. I am trying to live with terminal illness and you are trying to get to lunch. Our agendas are so different.
You have hurt me today with your overly simplistic label of my state of mind. The problem is, your label is seen as a scientific fact. I mean, it went in my chart, didn’t it? That makes it real and concrete.
I heard you behind that crack in the door say that there was nothing you can do for me. I heard you describe how difficult I am and that makes it impossible to work with me. I wish you knew how wrong you are. We wanted different things from each other, you and I. You wanted a smile, perhaps? A warm welcome? I wanted understanding. Today, neither of us got what we wanted but it didn’t have to be that way. I wish I had never heard you behind that door.
I am angry with you. I don’t have much warmth in my heart for you. The only kind thing I can say today is that I hope you never have to face the same kind of one-dimensional assessment you have placed on me. It is true that there is little in this world that hurts me more than being so misunderstood.
Truthfully Yours,
Tiffany"
The original post can be found at http://stanford.wellsphere.com/cystic-fibrosis-article/truthfully-yours/338044
Friday, November 20, 2009
Pissed off
Right now I am filled with so much anger. I exercised today on the treadmill for the first time in 5 days because I was not feeling to great the days before. So, I am only on program 1 (the treadmill has 4 different programs, the higher the number, the more intense the program), program 1 ranges from 2.5 to 4 mph for 30 minutes, that adds up to a mile and a half in 30 minutes.
My heart rate before getting on the treadmill is usually about 75 beats a minute, give or take 10 beats depending on the day (or time of day for that matter). During that exercise program by heart rate goes to 170-180 beats a minute at its peak. To me this seems excessive. I am not even jogging, only power walking. When I stop exercising my heart rate dropped to about 120 and slowly over an hour goes to 98 beats a minute. My heart then hangs in the 90's for several hours after exercising.
After a simple shower tonight my heart rate while standing was 110 beats a minute. Not as bad as when I was in the worst of benzo withdrawal/benzo damage because back then in the shower it was 140-150 beats a minute. This still seems excessive to me. I feel it is unacceptable. I am also pissed off that after a shower and/or after exercise I don't feel great and invigorated like other people. I feel tired, very bad fatigue, and down right ill for many hours, by ill I mean some type of acid reflux, gurgling stomach, diarrhea, pounding and racing heart. This of course leaves me highly pissed off, so I sit around till it ends. I am tired of it all and pissed when I think about is how I was blown off by that cardiologist back in April. I wish I was in better health back then and more "sane" for lack of a better word, because I should have demanded a stress test. I am still going to pursue one in time, since I have to get through these other appointments first. That is another thing, I am pissed I even have to go around to doctors trying to find out on my own if I am safe or not (and hoping to God they don't fuck me up more), and what is wrong if anything other than benzo damage (which no medical "professional" believes nor wants to understand. I swear sometimes I am worried I am going to lose control and deck one of them. I would have already, but jail doesn't seem appealing to me.
I can call Tuesday or Wed. next week to get the results of my PAD test from my primary care doctor. I really hope that test comes back normal. Thankfully and I am very grateful for the fact that I got a very nice woman who did my test. It was quick and painless, she was professional, yet very caring. I am usually stuck with some idiot who has next to no compassion and I feel like some number, some cattle being herded around. It was so nice to lay there and just have a very laid back, kind woman. Now if only I could find doctors and specialists like her.
I am going to look up how to file a formal complaint with the FDA because I want it on record about what happened to me with xanax. Once I find out how, I hope I can get the many other people out there who were damaged by these drugs to file too. Enough is enough.
My heart rate before getting on the treadmill is usually about 75 beats a minute, give or take 10 beats depending on the day (or time of day for that matter). During that exercise program by heart rate goes to 170-180 beats a minute at its peak. To me this seems excessive. I am not even jogging, only power walking. When I stop exercising my heart rate dropped to about 120 and slowly over an hour goes to 98 beats a minute. My heart then hangs in the 90's for several hours after exercising.
After a simple shower tonight my heart rate while standing was 110 beats a minute. Not as bad as when I was in the worst of benzo withdrawal/benzo damage because back then in the shower it was 140-150 beats a minute. This still seems excessive to me. I feel it is unacceptable. I am also pissed off that after a shower and/or after exercise I don't feel great and invigorated like other people. I feel tired, very bad fatigue, and down right ill for many hours, by ill I mean some type of acid reflux, gurgling stomach, diarrhea, pounding and racing heart. This of course leaves me highly pissed off, so I sit around till it ends. I am tired of it all and pissed when I think about is how I was blown off by that cardiologist back in April. I wish I was in better health back then and more "sane" for lack of a better word, because I should have demanded a stress test. I am still going to pursue one in time, since I have to get through these other appointments first. That is another thing, I am pissed I even have to go around to doctors trying to find out on my own if I am safe or not (and hoping to God they don't fuck me up more), and what is wrong if anything other than benzo damage (which no medical "professional" believes nor wants to understand. I swear sometimes I am worried I am going to lose control and deck one of them. I would have already, but jail doesn't seem appealing to me.
I can call Tuesday or Wed. next week to get the results of my PAD test from my primary care doctor. I really hope that test comes back normal. Thankfully and I am very grateful for the fact that I got a very nice woman who did my test. It was quick and painless, she was professional, yet very caring. I am usually stuck with some idiot who has next to no compassion and I feel like some number, some cattle being herded around. It was so nice to lay there and just have a very laid back, kind woman. Now if only I could find doctors and specialists like her.
I am going to look up how to file a formal complaint with the FDA because I want it on record about what happened to me with xanax. Once I find out how, I hope I can get the many other people out there who were damaged by these drugs to file too. Enough is enough.
Thursday, November 19, 2009
PAD test today
Today I have to go to the hospital for that test on my legs to check me for peripheral arterial disease. The test itself is easy from what I understand, it is just several blood pressure cuffs on my legs and an ultrasound. You know what though? I tossed and turned and woke up sideways in my bed anyway. Then shortly after waking up I cried my eyes out for an hour, as I drank grape juice and talked to my boyfriend on the phone. I feel so frightened to go. I am worried I will faint when I am there. I have a phobia of fainting, so that is enough to make me get very scared. Either way my body is so hyped up right now. Since benzo withdrawal my old anxiety is even worse and my central nervous system has become so sensitive to everything, even mild stress can feel like panic now.
I don't think even readers of this blog understand how bad my anxiety can get. I mean seriously I am a 33 year old man who is crying for an hour about having a simple test run. It is taking every bit of energy I have to slowly eat in hopes I don't end up throwing up (which I tend to do when I am nervous), take a shower and then drive myself there. I can't live like this forever. I can't take anything for this and all the woo-who people out there who think yoga, fish oil and B vitamins will get rid of this are just as bad as the doctors. I wasted many years on that crap as well, trying to fix myself and believe me if fish oil or yoga fixed you, your anxiety was not severe.
The source of my anxiety is easy to find. There is a part of my brain that is trying to find the answer to a problem it can't ever find, because it is impossible. It wants no suffering and to live forever (and before some religious person emails me I am not talking about after life, but it wants immortal human life). Everyone has that survival instinct, some more than others, but lets say a normal person is at a 15 on the scale. I am at 100 on the scale. Everything is a danger to that part of my mind. Like I said it is trying to avoid suffering and death at all costs, only in the process it is causing suffering and with all the stress maybe even an early death.
I don't think even readers of this blog understand how bad my anxiety can get. I mean seriously I am a 33 year old man who is crying for an hour about having a simple test run. It is taking every bit of energy I have to slowly eat in hopes I don't end up throwing up (which I tend to do when I am nervous), take a shower and then drive myself there. I can't live like this forever. I can't take anything for this and all the woo-who people out there who think yoga, fish oil and B vitamins will get rid of this are just as bad as the doctors. I wasted many years on that crap as well, trying to fix myself and believe me if fish oil or yoga fixed you, your anxiety was not severe.
The source of my anxiety is easy to find. There is a part of my brain that is trying to find the answer to a problem it can't ever find, because it is impossible. It wants no suffering and to live forever (and before some religious person emails me I am not talking about after life, but it wants immortal human life). Everyone has that survival instinct, some more than others, but lets say a normal person is at a 15 on the scale. I am at 100 on the scale. Everything is a danger to that part of my mind. Like I said it is trying to avoid suffering and death at all costs, only in the process it is causing suffering and with all the stress maybe even an early death.
Wednesday, November 18, 2009
Wore out tired
Sometimes I just don't want to do any of this anymore. I am tired of feeling like shit and being tired all the time. I deserve to feel well. I would like nothing more than to never have to talk about how sick I feel again. I would have loved to have had a life where this blog didn't even exist. I just want to be like everyone else. I am so full of anger because I have so much wrong with me and everyone tells me it is anxiety, or should I say "Just anxiety". It's not, I know my anxiety (which is awful on its own), but I know the difference between being sick and my anxiety.
Can you imagine being as stuck as I am right now? So wore out that you can't even clean your apartment, nor work. Yet I am being told I don't work because of anxiety. I don't work because I have bad fatigue, so bad at this point I couldn't even work from home because I can't focus. That is why so much time can pass with this blog before I update. Imagine not being able to run medical tests that might help discover a problem because it will restart the issues with the benzo withdrawal (you know the withdrawal I went through for months on end of never ending torture that no doctor or family member believed was happening and that it was all in my head.) and worse no one understanding why it would reset it.
I want so badly to write a book, but I don't have to energy to do it and I am so scared I will die before anyone will get to hear the full story. How did I fall through the cracks and how did I end up with so many road blocks in my way. Sometimes I wish I had a ghost writer who was local and could just spend weeks interviewing and recording me, then write my book.
It also makes me sad that if I died the people who have been reading my story wouldn't know I was gone. People would just think I stopped posting. My story would just get lost in the billions of pages of the internet and someday google would close down blogspot and it would all just be gone like none of my suffering ever happened. Do you know my boyfriend knows I have all these videos and blogs and he doesn't even read it. Everything that has happened with the benzo withdrawal and my health...no family member has even read about, nor my boyfriend or any "friend". My own parents couldn't even tell you the pills I took. I just sit here alone with all of this going on and a few people who email me off the internet, which is nice, but as you can understand just not the same.
Why doesn't anyone love me the way I need to be? Why can't I feel better? How did this all happen?
You know I am going to take some pics of how bad my apartment actually looks because sometimes it all just piles up and I am too tired to clean it. I am ashamed, but I want it to be seen.
You know no matter how many times I have tried to clean that toilet with different chemicals that junk will not come off. Tomorrow I go to the hospital to have my legs checked for peripheral arterial disease. Lets all hope I don't have that.
Can you imagine being as stuck as I am right now? So wore out that you can't even clean your apartment, nor work. Yet I am being told I don't work because of anxiety. I don't work because I have bad fatigue, so bad at this point I couldn't even work from home because I can't focus. That is why so much time can pass with this blog before I update. Imagine not being able to run medical tests that might help discover a problem because it will restart the issues with the benzo withdrawal (you know the withdrawal I went through for months on end of never ending torture that no doctor or family member believed was happening and that it was all in my head.) and worse no one understanding why it would reset it.
I want so badly to write a book, but I don't have to energy to do it and I am so scared I will die before anyone will get to hear the full story. How did I fall through the cracks and how did I end up with so many road blocks in my way. Sometimes I wish I had a ghost writer who was local and could just spend weeks interviewing and recording me, then write my book.
It also makes me sad that if I died the people who have been reading my story wouldn't know I was gone. People would just think I stopped posting. My story would just get lost in the billions of pages of the internet and someday google would close down blogspot and it would all just be gone like none of my suffering ever happened. Do you know my boyfriend knows I have all these videos and blogs and he doesn't even read it. Everything that has happened with the benzo withdrawal and my health...no family member has even read about, nor my boyfriend or any "friend". My own parents couldn't even tell you the pills I took. I just sit here alone with all of this going on and a few people who email me off the internet, which is nice, but as you can understand just not the same.
Why doesn't anyone love me the way I need to be? Why can't I feel better? How did this all happen?
You know I am going to take some pics of how bad my apartment actually looks because sometimes it all just piles up and I am too tired to clean it. I am ashamed, but I want it to be seen.
You know no matter how many times I have tried to clean that toilet with different chemicals that junk will not come off. Tomorrow I go to the hospital to have my legs checked for peripheral arterial disease. Lets all hope I don't have that.
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