Sunday, December 27, 2009

Life Like

In high school I really felt the need to please people. I would cry at home about it because I wasn't liked by the kids I wanted to hang with. They seemed to have a better life than me and their parties seemed fun. I didn't really feel included. In fact I remember looking at my reflection on the bus sometimes, cause I could see my face on the bus mirror if I was sitting in the first 3 seats by the front and think about how alien I looked. Some how everyone else looked like a normal person to me and to myself I looked so different.

I use to be scared to read out loud in class because since I would feel nervous I would read faster or trip over the words, making me sound dumb or like I couldn't read well. The teacher would make it worse of course by saying "read slower it's not a race" or "speak up I can't hear you", that or the girl behind me whisper the word I was stumbling over as she chuckled.

I use to walk down the halls of Albany High in fear of being tripped or of having a "kick me" sign placed on my back. If anyone touched my back I would put my hand back there to check. I lived in fear of confrontation.

Male teachers intimidated me, males in general did, even now..I am over all the rest that I listed above, but males upset me. Well not gay ones, but the rest do. I feel less male than them, I don't think they understand me or me them. Sometimes I have the urge to attack them when they are talking down to me or not understanding. I find them more often than not lacking compassion. I had a male therapist once. That lasted one session.

I think for myself I have a very hard time with males because my father never did anything with me. He yelled at me a lot, but it was my mom who taught me how to play baseball and to ride my bike. My father was emotionally absent and still is. I know very little about him. I had no other males in my life growing up, so I don't think I ever learned how to be and what to talk about.

I can't cry in front of str8 guys because my body goes on lock down with it because in my mind all I hear in their mind is "sissy", "faggot", "suck it up", "weak".

An other thing that is the same now, as it was for me back then, is I feel to most people my thoughts and ideas are seen as "silly", "weird" (not the good weird), "neurotic", "stupid". I feel people (people being almost everyone, doctors and family included) listen to me, but don't really hear me. I don't even feel that most of the things I say are that hard to understand, apparently it is for them.

Like my parents still have no clue what the dose of xanax was and I told them so many times, esp. when I was suffering in case something happened and I couldn't speak for myself. They don't know and my mom said "It's all too much to remember. I mean you say so much."

Truth is, all these years with my anxiety issues, depressions, the lung issues and even melting away before their eyes in benzo withdrawal, everything I said, everything I told them and neither of them ever cracked a book or looked anything up to help me.

The truth is does my father love me? I am sure in his own way. Do I think my father likes me? No I don't. Do I love my father? Yea because I have too. Do I like him? No.

I know my mom both loves and likes me. I love and like her too. She however has done just as much damage to me growing up as he did. My whole childhood was fear based. "Sit down you will pass out", "Don't stand that way" "What will people think" "You don't want it to break do you" "If you lose it think of how sad you will be" "say goodbye to your father cause if he dies in a car crash you will never forgive yourself" "I heard the car accident out front and I though you were trapped under the car" "what will your girlfriends parents think of how you eat", "don't fight back", "so and so is dead they bled out all over the bathroom", "so and so's baby drown in the tub" "girls will try to trap you into getting them pregnant so they can take all your money" (my mom said that one and most of them to be honest) (mind you I was like 5 to 6 years old for some of it). It goes on and on.

My father hordes mail. Our basement has boxes to the ceiling of mail and old newspapers. He doesn't comb is own hair...every day my mom combed it before he went to work. He would sit on the bed and she would spray it with water and comb his hair. He doesn't take a shower or its rare because sometimes I would lay little traps to see if the shower moved. My mother cleans herself out if the bathroom sink only and her hair in the kitchen sink. She also shampoos my fathers hair for him as well.

My father when he was not yelling at me or my mother sat in a chair and just read. Sometimes when watching tv, because he was laying on the floor and I was sitting on a couch behind him, I would watch him pick his ass and smell it.

Tuesday, December 8, 2009

The Trance

I am having a hard time getting ready to go to the pulmonologist this morning. I don't feel like moving, but I will.

You know what is strange? I don't know if it is from the horrible benzo withdrawal I went though or not, because I seem to remember a form of this feeling before, but I live in a constant zoned out state. I can function fine, but it is almost as if I stay in a meditative trance or a mild hypnotic state. I think I could actually snap myself out of it, but I stay in it anyway because even though I still get nervous about stuff it is oddly comforting.

I guess I am not in this state 100% of the time, but I would say 90%. I wouldn't even know how to properly describe it to a therapist. Some people online have said it could be depersonalization or derealization, but I looked that up several times and while similar, I do not really fit that, to be honest it is not even close.

I do however feel as if everyone else around me is plugged into something that I am no longer plugged into (I assume though that there must be many more that feel like I do and I would love to talk to them). I am not sad about this state of mind though. I almost prefer it, it is incorporated into my fear of death now because I fear losing this bizarre mental state that I live in often and never talk about.

If I had to try to explain how it feels to me without sounding too out there it is like a large part of my "ego" is dissolved. I mean I still worry about disfigurement, suffering and death, but I no longer feel any connection to the material world outside of living things. I don't care about concerts, movies, BBQs, new cars, celebrities, TV..ect. I don't worry about anything outside of health and survival concerns. Bad credit is not a concern to me for example, it has become just some number that means something to everyone else. I don't feel plugged into the social norms, dinner times, what to eat, when to sleep, decorations go up for holidays on this or that date and pictures are taken for all to see, holiday parties, birthday parties, stock market rising and falling..I could go on and on...I have no feeling towards it, no attachment, I simply view other peoples reactions to it and witness them doing all the things that everyone else does that is "plugged in", just like I did when I was.

So, I have no clue what that is, like I said it doesn't upset me. I prefer it.

Saturday, December 5, 2009

Prison Of The Mind

Sometimes there is so much I want to tell you (my readers), but I just don't know how without sounding crazy. Some of the stuff is based on a deep down profound feeling I have and I am sure many of you have as well. There is so much information that has to come out of me, yet I just don't know the proper medium to do it and like I already said..I don't even know how to say it.

This blog, I have used to express some of my most darkest feelings. I have had to ignore the little worry in the back of my head telling me I will be judged. I find as soon as you have an opinion half the world will hate you. I hold many opinions and with as much as I have said... I am holding back.

You would be surprised how many emails I have received or even people I have opened up too that just don't get me. Some people are upset that my blog is so dark, that I am so dark, yet no one makes anyone read it, no one is forced to speak to me or agree with me. I am not here to shine the light into peoples faces and welcome them into a world of joy and comfort. I am here to express the horror, pain, suffering and injustice that goes on, not only in my life, but in many peoples lives..I am the mirror that reflects that back to you. I will change for no one. Even if that means making choices (refusing treatments) in my life that might kill me off sooner...there are worse things than death in this world and while I have a fear of death...I fear suffering more and the ignorance of others...my worst fear...suffering in the ignorance of others.

Some people like to "think positive" and there is a time and a place, but for lack of a better word, you (myself included) have become domesticated. We have so many thoughts that contradict, these thoughts are fed to us, by TV, magazines, friends, family, doctors ect. There is so much noise. Mother says to child "Why are you crying, be a big boy, no one else is crying." same mother says "Well just because everyone else is doing it.....(fill in the blank)". She is conditioned, you are conditioned, I am conditioned. The difference between me and I think some of my readers is we know it. I am a domesticated, conditioned human and I hate it, because I can now see it for what it is. I hate every breath I take in this state because it is nothing short of a jail cell that my mind and your mind has been locked in.

How many times has your gut told you not to do something, but other people, be they friend, doctors..what have you, have said "better to be safe than sorry." that line instills a fear..it is a nudge, a push to do their will. Why did you ever stop listening to that little voice? I think because I don't listen to mine or even just because I question my internal voice, that is why I have anxiety and mentally suffer.

Something might scare you, but if you really need it you will do it with no coaching. I was scared of my lung surgery, at the time death would be the only out come without the surgery. That made my choice easy, sure I was scared, however I had no doubt in my choice.

You must in this society be something, do something or people are confused, upset or you are seen as crazy or weird. "What time did you go to sleep?" "Noon" is met with "omg why?","why haven't you been to bed yet" I mean the list goes on and on..but whats it to them? Who sets the times to sleep? Who sets the times to eat? What to eat?

"Are you a student?" "Do you work?" reply "No and no" to which "Well what do you do?"...."Nothing" this will cause the most probing questions...after all we "must" do something.

I think some people get where I am going in this post and others not so much and that is ok. Like I said I have so much to say and I think I am losing my concern of being seen as completely crazy. So things eventually might start being posted or said that may or may not make you comfortable, maybe will seem boring or maybe just not for you. All that is ok. Someone once said "Nothing that is ever said is true...including what I am saying right now."

My mind like yours is fluid, what is right for me this year, may not be right for me the next, opinions change, so don't look to me for your answer. I promise you the key that unlocks me from my cell will not open your door. You have to find your own key. "I" the person who lives inside my mine is simply watching all this unfold. I can guide, but I can't save you, only you can do that.

Tuesday, December 1, 2009

Death Phobia

I have successfully upset myself the past two mornings. I have a pretty strong death fear which is why the "xanax/paxil extension cord" event (see video on the side bar of this blog for that story) was out of no place and the withdrawal completely changed me at that time.

I have many fears not just of death, but also of suffering. I don't want to be helpless in some nursing home or crippled either. Death worries me because if there is nothing, that is the end of me...of course if there is nothing after I won't feel upset about it because I will be gone, however for now I am alive and can worry about this. I actually cry over this in the shower or while driving or whenever ..I think about this often actually.

I will be gone from this Earth and to be honest I am such a wonderful person. I don't think anyone has truly seen that about me yet. I have so much to offer and I am always so sick. I know death will come early for me. It is so sad and no amount of "try not to think about it" or "find God" will help me...no matter what I do or what anyone says ..I will disappear forever...I was here and someday no one will ever know I was. It will be like I never existed at all.

Monday, November 30, 2009

Three Emails To Ben

Below are 3 emails I wrote this morning to my friend Ben. I did not include his replies to me because I did not ask if it was ok. However you can pretty much figure out things he asked by my own replies to him.

------------------------------
Email 1:

I never ended up falling asleep instead I upset myself and cried for an hour, Keith called me from work I cried to him on his 15 min break...he told me not to worry, I do anyway about a lot of stuff. I read a blog about secretly wanting to suffer. I posted it on facebook, maybe on some level I do want to suffer, even if I don't.

I have decided to go to bed when I cant stay up anymore.

I was crying because I don't feel my body is working correctly or as well as I want it too. This of course weighs on my mind. And even if it is "broke" not like I can do anything about it today so no idea why I dwell on it.

I am aware that on some level I am unbalanced.

-------------------------------------------------------
Email 2:

Thanks for offering for me to cry on you and stuff, you are right though I wont. I am interesting when it comes to that...my mind will be "normal" and pull itself together around "new" people. I have no control over it, so its not like I am acting, it just refuses to let things go. I think that is why I have a hard time at therapists as well. I lose contact with that is upsetting me and become someone else..which is why one time I wrote stuff out and gave it to the therapist and she said "I don't really like to read things...I rather just talk in person" lol...hmm ok then here is forced, fake me hehe..

Yea I spent some time thinking about the "wanting to suffer" thing...I found it because on google I searched "I secretly want to suffer" only because someone a long time ago told me I did and that article came up.

On some level I must want too, but also I think I am in a very high state of survival instinct. I guess if normal people are a 3, I am a 9 or 10 on the dial. Any thing that my brain deems as dangerous will cause a great deal of stress for me...now with something bad actually happening to me, no doctor believing me and my fear of the medical tests, all the unknown has my brain on high alert...also the benzo withdrawal was so awful on many levels..I am traumatized over it still, I don't know if anything I feel is still damage from that or something new happening to me, completely unrelated and that "unknown" generates my brain to stay active and not relax ever.

I mean my very first thought as soon as I woke up today was "Crap, I hope Propofol isn't cross reactive with Demerol." (its not), but that just shows a brain on overdrive...trying to think fast enough to save "the self" from injury or death..in the process it is causing depression, anxiety and discomfort. Because the doctors were all so ill informed about prolonged benzo withdrawal and I had to go through that suffering without help, now its like my brain is trying to learn at lightning speed to out think the doctors and no more than them because inside I am worried I have too because like before they wont help me, believe me, or understand what has happened. I also fear damage from a medical test like a stroke or what not because it will take away my ability to out think them and help myself...only to be at their mercy.

Yea and that is the thing. I know it can take so long to recover from the benzo thing, so I worry if I get a test and some drug used flares it back up, then I will be very upset esp. if the test comes back normal...and on the other side of the coin what if I assume it to be benzo related, ignore it, don't do a test and end up sorry later because I was wrong. I am always worried about picking the wrong choice.

I dont think a lot of people care about me. On some level I guess some do, but I wouldn't say alot...I find most people care about me, but not enough to understand me or deal with my issues. The other problem is I keep myself isolated. People at times offer help and I don't take it..I think if I ran out of all options I would...its not even a pride thing...it is more of my anxiety controlling me thing. It is hard to explain. I still think I am unbalanced hehe.

Don't get too upset over how I feel. I go in and out of emotions and this year I seem to do it very rapidly. I can spend an hour crying, then feel ok, then feel depressed only to wonder why I am so scared and then accept life for how it is, then only an hour later scared and crying again...its actually very tiring...I would worry about being bipolar, but I am never manic or even have hypomania and I seem to cycle more rapidly than other bipolars I read about lol.
-----------------------------------------------------
Email 3:

I think I might go to bed soon...maybe I am not sure. I was fine, then I had some gurgling in my stomach and it reminded me that I will have to maybe have tests that require sedation, that brought up all the benzo withdrawal stuff and fear of hemorrhage during or after the test (from colonoscopy and endoscopy). What scares me is even after the test is over it wouldn't be for me, some people hemorrhage days later and almost die requiring transfusions. With my blood phobia and fainting phobia..I don't know how I would cope with all those days of worrying and also if that accually was to happen to me, I am not sure I would mentally ever recover. I have a hard time recovering from small stuff.

I know these things actually happen to people because of course I have read about them happening..either written by themselves or a spouse ect ect.

The weird thing is on a rational level I know that all the worrying in the world will not change an outcome. For example when I see a dentist I am worried for weeks before that I will faint or something bad like a major side effect will happen (many people don't know if they inject the local anesthetic wrong and too much gets directly into the blood stream it can cause a seizure to occur). So anyway, I worry myself sick and usually throw up before I even go, sleep and eat poorly the day before and day of...I suffer and then I go. However I know my suffering and worry will not prevent a side effect, an error or a fainting spell from happening. Yet I worry anyway and get upset because it almost feels like if I don't I am just asking for something bad to happen.

It reminds me of a story I read a month or so ago of this 20 year old something guy who was all excited about being in the military. He had to have his gallbladder out though and his mom was all worried and he said "mom this is simple, they do it everyday" he had no worries at all.

During the surgery they cut an artery and he lost so much blood so fast and they couldn't get him help fast enough. They had to take off both his legs. He came to in ICU legless and his military career over before it started. His mother said he was badly depressed and his girlfriend was very upset. Someone could tell me about how most gallbladder surgeries go fine, but it will never matter to me because that boy as no legs and as I write this he still has no legs and 10 years from now he still won't.

Kinda like when people say well only 1 in a 100 or 1 in 1000 die from "fill in the blank" procedure or medication. They make you feel bad for worrying about it, but someone will die and their life will be gone. People and by people I mean my mother and maybe people I have dated or close friends act like that is everyone else it will happen too, but it wont happen to me. I try to explain to them I am no more special than anyone else. It could happen to me.

See stuff like this worries me

"40,000 Auto Accident Deaths; 200,000 Preventable Medical Error Deaths Every Year

The numbers emerging from a recent investigation by Hearst Newspapers are absolutely staggering: nearly 200,000 Americans are dying every year from died from medical mistakes that could have been prevented, often using simple safety procedures."

You can find the same number, (some a little less) reported by different studies. However lets cut the number in half ..say 100,000 people. People were all wigged out by 9/11 and 3000 dying ..that is like 33 9/11's happening every year almost 3 a month and that is with the number of medical deaths from mistakes cut in half.

I get very upset when I can't fix myself because the honest, truth is I lost faith in the medical community before my xanax withdrawal and now after I have none left. I need their tests sometimes, but I don't trust them to give them to me, which puts me in a bad spot.

Again I realize I can talk till I am blue in the face about this and worry nonstop, but it won't change the outcome. I think sometimes that is what I am trying to do, control the outcome and stop the unstoppable by controlling the uncontrollable.

Sunday, November 29, 2009

Failed Experiment

OK, so a little while back I said that I would try making little recording like a podcast of stuff going on in my daily life. It didn't work out so well, but I will post what I have. It is quite awful actually, but I am not one to hide my messiness, so I will post it anyway. I don't even think the audio came out right. I took the first 11 and put it all on one clip and then there are some others...each is a minute to 5 minutes long. I think it is a failed experiment though, or who knows I might try something different in the future. Keep in mind these recordings were about a month ago.











All the rest if you care to listen can be found here http://www.youtube.com/user/brianhealth If you listened to all these you just finished video 15, so when you go to the youtube link just start with video 16.

Versed

Sometimes I feel like I am having a nervous breakdown, maybe I am having one, who knows. I am tired of having to deal with and worry about everything. I am having major digestive issues among other issues that I have mentioned in the past.

I have to take metamucil or I can't go to the bathroom, that started after I quit smoking, I became so constipated since I quit, before I quit I was having cramps and diarrhea. The lower left side of my colon at times is sore. When I had cramps in the past (which thankfully I haven't had recently) they can be so intense I almost pass out.

I get so bloated over the past few months I think that is what is making me breathless. My stomach can be flat when I wake up and by bedtime I look 9 months pregnant. When I sit up on the couch to get up to go to the kitchen I have to wait 10 seconds or more, I can't just stand up, the pressure causes my heart to race, I hope its the bloating causing that.

The slightest movements sometimes causes my heart to race. (Thankfully nothing like it was during the worst part of benzo withdrawal). No matter what I eat, I bloat and also my throat burns and sometimes when I try to burp I can feel food coming back up my throat. This all matches Acid reflux, GERD, IBS, Ulcertive colitis (which my past idiot doctor, back in 1994 thinks I might have had, only he isn't sure and never sent me to a gastro, some where on this blog is that story about the "maybe" Ulcertive colitis.), it also matches things like stomach cancer, so that is not cool esp. since that runs in my family.

So now people would say "You need a colonoscopy and an endoscopy." Only I have to be sedated for that and I can not be (and by have to be sedated I mean I am not the type that can do that not sedated). If you are not familiar with the type on benzo withdrawal I went through watch my video and also read up on sites like benzowithdrawal.com. (Well I can be sedated, just not with a benzo.)

They usually use a drug called "Versed" only that is a benzo. So, I am left with a drug called "Propofol", you may have heard of that drug because it was one of the drugs that helped kill Michael Jackson... granted it was very abused in his case. However I have concerns because if I was to use that drug there is a larger risk than Versed of having a bad outcome and there is no guarantee that that drug won't scramble me anyway, since it also works on the neurotransmitter GABA.

I am in a situation where I can tell a doctor all these concerns till I am blue in the face only they don't care, because, up till now, I have not found one who believes me. So they just try to poo poo my concerns because they honestly believe I have no idea what I am talking about and its all "just stress". I have major stress alright, but its stress and anxiety being generated by not being heard, believed and worked with. It is stress and anxiety from knowing something is wrong and no one believing me.

The level of stress I am under can be summed up by the fact that this morning my first thought as soon as my eyes opened was "Crap, I hope Propofol isn't cross reactive with Demerol." This was a concern because I can not take Demerol. I had a bad reaction to it in 2000 right before my lung surgery. However from what I have read today I gather that Demerol and Propofol are not in the same family.

I would now like to take sometime to give you some peoples experiences on "Versed" and "Propofol" I will do "Versed" first:

1) Disorientation, anxiety, PANIC. Totally bad reaction, totally unnecessary. They asked me if I was nervous or tense and I said no. This procedure was actually minor compared to a couple I had in the past. Five minutes later the guy just up and puts the stuff in the IV while using the "something to relax you" line. WHY ??? After what seemed like five minutes of ever increasing anxiety, I found myself in recovery and very shaken. Bad drug and BAD PEOPLE who push it.

2) It's been 5 years and i still suffer from anxiety attacks from this poison. This drug should be banned by the FDA it's dangerous!!!!

3) It just flat DID NOT WORK. I kept telling them that if this was semi sedation..I wanted something else. It has been maintained I won't remember it tomorrow. But the tears that streamed down my face while they did the work.. I won't forget. I have taken it to calm me down before a D and C because of a miscarriage. They gave it to me and even into the second dose, it didn't help. I thought maybe it was just ME but it appears it doesn't work for a LOT Of people.

4) Dizziness, nausea, sweating, very low blood pressure. I was given this medication not to be put to sleep but to be awake and drugged during surgery. I felt horrendous pain when the doctor was doing the procedure. When I came out of it, I was dizzy, sweating profusely and nauseous. My blood pressure was 60/20. I tried to throw up, but nothing came out. At that point I started to pray, I had the feeling that I was going to die. I was in recovery for 4 hours, while everyone else was leaving after 20 minutes. I will never ever take this drug again. At 2:00 a.m. I woke up and my arms and legs were numb, I thought I was having a stroke. Patients, BEWARE!!!

5) I had asked the Gastro. Dr. to not give me the amnesia causing drug - just the pain killer (fentanyl) He referred me to the Center where the procedure would be done. I also discussed my wishes with the Nurse who would be administering the meds. the day before I went in when she called to fill out paperwork and "answer any questions". The day of I reiterated my wishes. I signed no consent for anything other than the colonoscopy. The response from every one of these "professionals" when I requested to be awake and aware was "no you don't". Then they would continue on - I felt like the 2 yr. old victim of lousy parents my wishes and request were dismissed out of hand. Now I am having nightmares, anxiety, anger, insomnia and flashbacks. Before this I never had any problem sleeping, never anxiety problems either. I'm also not able to let it go and get on with life. I have no doubt that I would have had no problem with just the fentanyl as I have given

6) Versed totally ERASED a co-worker's daughter's memory. Surgery was in Apr 09 at the Mayo Clinic. She still does not have her memory back (Sep 09) and might not ever. The FDA should be removing this drug from its arsenal immediately!!

7) I was awake but totally paralyzed. I felt every move, every turn, I tried fruitlessly to scream out for help and demand some pain meds. It was the worst experience of my entire life. Like being in an Iron Maiden...Whoever approved this drug for use on people should be shot!! A great way to torture someone and have them unable to do or say anything about it. They say that this takes away bad memories of any pain...why not give the patient pain meds and skip the Versed. DO NOT LET ANYONE GIVE YOU THIS CRAP....You'll regret it for the rest of your life!!

8) PTSD symptoms, lasting for months post-procedure, never experienced before in my life.

9) More anxiety than I ever felt before, mad as hell, fighting, swearing, telling all my secrets. My girlfriend says they wouldn't let her in, but she could hear me fighting and yelling and things crashing all the way down the hall. They never told me this would happen or said anything about amnesia or truth serum. I am a man who doesn't need some drug like this. It was only going to relax my muscles. This is a serious freak out drug.

10) Agitation, flashbacks, panic, uneasiness, sense of dread.

11) I recall gagging some during the procedure. It was unpleasant. For weeks afterward, I had strange panic attacks. These were preceded by a strange feeling of trying to recall something (like a person's name) but the memory never focused.

12) Severe agitation, couldn't move or speak and I was in pain, severe memory loss that persists today, 2 months later.

13) Something is seriously wrong with this drug. DON'T GET VERSED. they told me it was to relax you, they lied. It's to make you forget. My gastro admitted that they don't tell patients the truth about this drug.

14) My side effects were livid furious anger, paranoia (what happened to make me so angry?) and insomnia. Despite 9 units of Versed (and 100 of Fentenayl) I was fully awake and my memory was again functional within 25 minutes of the initial dose. In other words my brain fought off this drug quite well. The problem was that it knew something happened to it and has been trying to recreate those "just under the surface" memories now for three months. In fact my brain has uncovered much of what happened during the procedure. I am sitting here again at midnight in one of a continuous number of sleepless nights caused by my now hyperactive brain. My wife finally talked me into going in to see someone and I have been diagnosed with PTSD. I now am taking anti-depressants to prepare my brain to better accept therapy. How could this happen to someone with NO prior mental health issues in 50 years of life??? From a very simple medical procedure.

15) Several years ago I was given Versed for a colonoscopy with terrible effects. I couldn't talk or scream but felt every centimeter of the probing. My doctor said that next time he would give me more. Obviously there was something wrong with this. I went to Barnes and Noble and took out four drug books, and found in one there were four pages of side effects including paralyzing of the throat, tongue, mouth and more. My doctor had never "heard" of this. I make sure in any surgery that I do not have Versed.

Here is more information on "Versed". http://versedbusters.blogspot.com/


OK and now for the "Propofol" experiences:

1) Catastrophic loss of memory, dizziness, inability to function at normal cognitive level. I woke up from anesthetic and was euphoric. My problems started as the anesthesia wore off. I became dizzy and disorientated and unable to think logically or remember correctly. After 2 days I rang the doctor, and could remember my name but not my date of birth. I lost all higher cognitive function. I stopped going out. I couldn't any way as I had no mind maps I could follow. I could see my front door and "see" the place I wanted to go but couldn't visualize a route from memory. I could not compute; if I picked up two packs of meat in a shop I could not work out which was better value. A 2 year nightmare, and then a 2 year recuperation.

2) It is more than two months and my memory and abilities to concentrate, read, think, formulate thoughts - are crippled. Worse than a brain injury, because I know precisely what happened. My thoughts are less cohesive and sincerely believe this is not a product that should be used. Much less administered during a 'minor' surgery. I was told by the surgeon that he had to wake me a few times - but now that I have read some of the others comments here - perhaps, he was rousing me from the 'dead'... I have no recollection of being waken during the surgery. I will not take this again, nor will I recommend it to anyone. It does affect the brain's abilities. BEWARE! I had 'joked' with another doctor only earlier in the week, "Just don't give me what they gave Michael Jackson!" And lo and behold, that is exactly what they did! I had only received it one day for surgery.

3) EXTREME pain (not just a sting) when it went in. I screamed and fussed at them and told them they could have warned me and the pain in my arm was absolutely the worst I've EVER felt-no exaggerating. Then while I was talking to them I stopped breathing while still awake...the nurses were telling me to 'just breathe' and I was waving my arms around and pointing at my mouth and throat to let them know I couldn't...I was WIDE AWAKE and suffocating and they weren't even looking at the monitors.They should warn people of things that could possibly happen as a result of this drug. The surgical center dismissed my complaints and said they 'were sorry I had the perception' that something went wrong. Maybe nobody told them what could happen. When I woke up my surgeon told me,"Well, you're alive."

4) Just a "little to relax you"....what a bunch of BS....6 months later and i remember the agony but have lost long term memory.

5) Severe nervousness, tremor, difficulty breathing. feeling of a chemical straight jacket.....frozen unable to move while suffering and unable to move as they laughed and said: "she won't remember"...I did and it was awful.

Peripheral arterial disease results

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."

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

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.

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.

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.

Tuesday, November 17, 2009

Threw up today

I don't know what my deal is today. I woke up feeling wore out. Soon as my eyes opened my heart raced for about 15 seconds. I got up and like the past few days have not felt very hungry. Had a glass of water and some juice. Keith called me when he woke up and I told him that my stomach felt off and for some reason I have not been feeling all that great. Then out of no where I barely made it to the bathroom and threw up. Because it happened so fast it got on the toilet seat, the bathroom floor and some on my pants. I told Keith I would call him back. I then continued to throw up about half a gallon of liquid, way more than I had drank. I have no idea where all that came from.

I feel so wore out now and have been eating white rice. I don't feel like eating anything. I called Keith back and we talked on his way to work.

Monday, November 16, 2009

I am Destroyed and you are dumb

There is so much I want to say right now, only the truth is I don't feel like writing it out. I don't think anyone understands that my life was destroyed by a benzodiazepine (Xanax in my case, but 10's of thousands of other lives, if not more destroyed by others such as Valium, Ativan or Klonopin).

My reality is people are too stupid to understand...I mean literally too stupid. Do you have any idea what it is like to have been destroyed on so many levels and have family, friends and doctors just not get it and even not completely believe you, if at all?

I am so sick of trying to warn people and get that response "You shouldn't scare people cause just one bad reaction..blah blah blah". I am so enraged by those type of people. I am not the only fucking person this happened to you ignorant cunt. Why can't people read shit on their own? Why can't they use google and find all the lives devastated by these drugs?

You know what else I am sick of? People who watch my story then email me saying.. "My doctor is going to start me on Klonopin and we are going to see how we do?" Are you fucking kidding me? There is no "we", there is you and those pills. You watch your jackass of a doctor turn on your bitch ass when you can't function. How fast you will be told it is your disease. It's all bullshit.

I also for the life of me at this point am not replying to dumb emails where someone reads this blog and asks if I have tried lexapro or any other med. Do you seriously not get it? Why the hell would I do that. Oh and to the freaked out people who say "Well are you saying people shouldn't be on those drugs for anxiety (referring to benzos) hell yes I am saying that. You have no business being on them for anxiety at all period, no ifs ands or buts and any doctor who prescribes them for such should lose their license. Why don't some of you grow some balls and write to the FDA and start stepping up. You let these doctors walk on your bones... "Yes doctor" "Doctor knows best"...it turns my stomach.

You know what else I am sick of hearing. "I have been on my pills for 10 years and I am fine!!" Well woop dee fuckin doo...that is like someone all self righteous saying "Well, I have been smoking cigarettes for 10 years and I don't have lung cancer."

I am seriously tired of being nice. I have been nice my whole life and look there that got me. Oh and spare me the "Law of Attraction" bullshit. I am well read on the New Age, as well as David Icke and the New World Order stuff. I am not ignorant to any of that stuff, but the idea that people believe that the bad stuff that happens to people is caused by their thoughts are just as bad as the Jesus freaks who have no compassion for people. I am not atheist people (though sometimes I see why people are), but for God sakes telling me to listen to people who are "channeling" some bullshit is just that..bullshit. I believe in a lot more things than most realize. I am most likely more open minded than 99% of the people reading this, but I don't need educational emails on basic positive thinking philosophy, I am way past that point. I don't want to be positive anymore, living in la la land gets you no place, action and information does. I want people to stop being poisoned...and don't think for one second if you are popping those pills you aren't slowly being poisoned.

The honest to God truth is, unless someone is a danger to themselves or others there is no reason to be on an antidepressant and definitely no reason to be on a benzo. "Oh, but Brian my anxiety is too much to deal with without it" So is mine, tough shit, do you think I am having a blast right now as I deal with that and my fucked up body? I rather only have the anxiety than what those pill can and will create for you given enough time. You can all get mad about that and email me about why you just have to be doped up, but seriously shove it. We now live in a world that rather pop a pill to lower their cholesterol than to eat right and exercise...it is disgusting.

My father has high cholesterol. I made a diet for him, although strict, allowed for one bad breakfast, lunch and dinner once a week. In 3 months I got his cholesterol in normal range. The HDH and LDL were great. Then the beer came back in here and there, the ice cream, cookies. Now my father was never a heavy guy, has always been thin, but him like most other people in this world can't follow fucking instructions and there my mother sits with colon cancer talking about how he "Has to have treats and enjoy himself" as she keeps eating red meat several times a week. I don't get it. His cholesterol is back up and my mother claims "He doesn't eat anything bad." Bullshit WTF???

I could kick my own ass for ever being a smoker. I am so glad I quit that. I also am pissed I was ever a heavy drinking and thankfully I have been alcohol free for 2 years and cigarette free for 2 months. Too bad its not enough. I am suffering and not a damn person gets it, at least anyone that I need to get it.

Below is a story of a woman I think is amazing for what she went through.


http://bipolarblast.wordpress.com/2008/03/01/story-of-accidental-addiction-to-benzodiazepines-survival-endurance-and-then-total-recovery/

Saturday, November 14, 2009

Peripheral Arterial Disease Test

I went to the doctors on the 10th of Nov. It turns out the way it usually turns out, me leaving without feeling like I am being taken seriously. Before I saw the doctor I saw his assistant who of course asked me everything the doctor would later ask me.

I told him about my feet being cold and hands turning purple. I discussed how my blood pressure has been running low (for me [I am usually in the 120/80 to 110/70, but for over 2 months now I get readings of 90/60 and 89/57 {Which went low before I even quit smoking}, which for me is not all that normal) instead of listening to the fact that my blood pressure has been running on the low end, he wanted to ask why I was taking my blood pressure, how often I take it and and if I keep detailed records of it.

I knew where this was going and started to feel angry about it. I just said "because I am neurotic...is that what you want me to say?" He just said "I was just checking". I told him I check it because I get nervous in doctors offices and it spikes, so I was told by other doctors in the past to check it myself. I also check my blood pressure because years ago when I was a heavy drinker of alcohol it was high and I was told to monitor it to make sure I was getting it under control. Personally I feel it is none of there damn business why I check my blood pressure. I am not concerned about my habit of taking it only noticed a major change for me and reported it. My blood pressure at the doctors office was 102/70 (keep in mind that was me nervous).

He then tells me that home blood pressure monitors aren't accurate. I told him yes they are. I am so tired of hearing random bullshit from them. They are accurate. In fact my mom has to take hers often and she even brought hers into the doctors office to make sure and it was the same. Just like years ago when she had high blood pressure they checked and it was the same with another machine. Also notice if you take your temperature and report you have a fever no doctor asks "Why did you take your temperature?" or "Well thermometers aren't accurate." please kiss my ass.

I got no place on the blood pressure front. Nor did I get any place on the fact when I stand up my heart pounds and I feel breathless at times with a heavy feeling in my chest that lasts 15-30 seconds. When the doctor did finally come in he seemed to be interested in my cold feet, but not purple hands. That was another thing. My feet get cold and sometimes purple. My hands turn purple, but are not cold. They both didn't seem to be able to keep that straight and after enough dumb questions as it was I was asked "Now when they get cold is it in response to opening the refrigerator or opening a cold beverage" to which I replied "I don't usually open the refrigerator or open drinks with my feet....my hands do not get cold, just purple." Then he said it could be raynaud's phenomenon and I reminded him none of this happens in response to cold. It happens just as much as when I am warm. I also reminded him this stated in July of this year. See usually raynaud's phenomenon is not a big deal, but if it suddenly comes on in later adulthood it can be a cause of something more serious. He admitted he was confused since it isn't in response to cold.

To make an already long story short I am being sent to a local hospital to have my legs tested for PAD (Peripheral Arterial Disease [Arteriosclerosis of the extremities]) on the 19th of Nov. since he isn't sure what is wrong and as I sat on the exam table my feet were turning purple and my toe nails blue, he said my circulation response was good. My Oxygen level was 98% as well. I have no idea, but I do hope I don't have Peripheral Arterial Disease for several reasons. 1) I won't deal well with it emotionally and 2) I am not taking drugs to treat it at all. That I am sure is a shock for some to read, but this is a very educated decision on my part and the fact is that it is not just that I don't believe that statin drugs are unsafe, but I KNOW statin drugs are unsafe. For people that pray keep me in your thoughts because I really don't want to have to deal with that right now.

The purple hands I asked about. He has no idea what is causing it yet told me they usually use calcium channel blockers to treat it (Treat what? You don't even know what the reason is.) Also did anyone hear the fact that my blood pressure is on the lower end of normal and calcium channel blockers lower blood pressure? Sure my hands won't be purple..I will just be pasty white passed out on the floor.

I also got a referral from him for a sleep clinic since I wake up sometimes not breathing and gasp for air, roll over and go back to bed. It is uncomfortable when it happens, though not often. I have major sleep issues anyway. Now I have to wait for the sleep clinic to contact me to make and appointment, which the receptionist said can take up to 6 weeks for them to call me.

The plus side is my doctor told me that I no longer need written referrals for CDPHP if it is through medicaid and I could have just made the appointment myself. This was good to know and when I got home I made an appointment with the pulmonologist for Dec 8th, since maybe he will understand my breathing issues and lung pain (I mean seriously people I had part of my lung removed in 2000, do you think maybe some doctor would like to check into what I am feeling in the same lung as the surgery?) And I also made an appointment with the Gastro doctor for Jan 25th. I just hope they don't pull my insurance before all these appointments.

I don't think the doctors understand. My anxiety is bad when I see them. I am clam in my apartment and around my boyfriend, yet I am still sick then. I have had "anxiety" issues for many many years..this is very different and they need to start listening. (It also drives me crazy because I can't tell what is lasting effects from xanax or something new) I am usually a very nice person, but I can feel myself becoming a bitch. I don't like being questioned or second guessed anymore. I don't trust doctors after what happened to me with the benzo withdrawal, I was treated awful and frankly I have learned that for 2009, we aren't so advanced. If a doctor has no clue what is wrong with you, you will be told "It's just anxiety", "It's depression", "it's irritable bowel syndrome" blah blah....they say this without testing or even really listening to people.

Tuesday, November 10, 2009

Doctors Appointment Today

I have a doctors appointment today. I wish I could just go in with a list of everything that is wrong with me, but I know from experience I will just be ignored. It is bad enough I might be ignored anyway.

My feet have been ice cold on and off; even in socks and sneakers. A few times they have been so cold they have hurt and I have had to turn a heating pad on and put my feet on it for a half hour or so.

Sometimes they are so cold it travels all the way up to my calve muscles, so from my feet to my calves are cold to the touch. Then other times my feet will feel like they are ice cold. I will be sitting at the computer and it feels like they are on a block of ice, only I will touch them and they are completely warm. I have no idea.

It has been going on since July. To be honest it started when I took Prevacid, but there is no way I am going to tell the doctor that because he nor any other doctor believes what happened with the Xanax withdrawal, so if I go in there claiming yet another issues maybe caused by a medication I will be completely blown off. I was on Prevacid a total of a month and I the feet thing started a few days into me taking it. Who knows though, maybe this is all still some form of damaged caused by Xanax. I don't even know anymore.

I am still getting breathless, heart pounds heavy and hard when I stand up (thankfully no longer fast 99% if the time), still having bowel issues and I walk around feeling like my stomach and intestines are scorched. I still wake up from not breathing in my sleep from time to time, that is when I can stay asleep at all. As of late I am lucky if I get 6 hours of sleep.

Anyway today I will just tell him about my feet and purple hands. Try to get a referral to a sleep clinic and to a pulmonologist. Next time around I will try to get sent to a gastro doctor. You know this would all be a lot easier for me if I didn't have such bad anxiety about doctors, blood, needles and medical tests.

My mom has been off chemo for two months now. Her doctors took her off because she became too sick and too thin, they need to get her stronger so she can have liver surgery to remove the cancer. Even off she still is running to the bathroom with cramps and diarrhea for about 3 hours a day if not more. She now weighs 98 lbs. and can hardly eat. After the liver surgery (which I assume will happen around Jan.) she will have to start chemo again. I am literally watching the medical community kill my mother, it is just a matter of if they will kill the cancer before her. I don't know what I would do if I had cancer because I don't even know if I would treat it after watching what really happens. I am sure many reading that statement may not understand.

Today she is going in to have a CT scan to see if the cancer grew or spread since she has been off the chemo for two months. I am not sure when she will get the results from that, usually after a CT scan they do a PET scan just to make sure. I don't know why they even bother doing a CT scan if every time they do one a week later they decide it is best to check with a PET scan.

Wednesday, October 21, 2009

Podcast or Something

I have spent the past two days sick to my stomach. I think I have some stomach bug that has been going around. It seems to be passing though. I did live mostly on liquids during it....ahhh memories of earlier this year when I had to live on liquids for months.

The downside to being sick is I have not been able to exercise for two days and if I miss tomorrow that will be 3 days...not good. I actually miss exercising, isn't that weird? Either way if I eat enough tomorrow I will be exercising.

So, over the past few days I have been considering doing a podcast type thing...a podcast, but not a podcast. Basically, I find that many people don't read, so lots of people never get into this blog. I have videos up on youtube, but guess what? I don't really feel comfortable being on video often...it's just not my thing..at least right now. So I figure audio might be the way to go.

I will still be doing the blog and of course videos, but to be honest I have so much to say recording it might be a good idea for me.

This is my plan. I have a Vonage phone, when a voice mail is left on it, it gets emailed to me as an audio file. I think my phone allows 10 minute voice mails, so that would work out well. Then I could just upload those audio files to a second Youtube account and a free podcast company... maybe.

If of course the voice mail thing does not work out, I guess I will have to sit in my chair and record it with my computer mic which would be boring. I want to be able to move around, talk while I walk on my treadmill or while I cook.

This blog and my videos have been so honest, but I really want to make these audio recordings super honest, my thoughts on a variety of things, my spiritual ideas, foods I eat, more into my past, basically everything. The fear in doing this is I will piss people off who do not share my views or people will see me for the nutjob I really am hehe. I mean seriously I think and do messed up stuff...and for the first time I would not be censoring myself. Trust me I heavily censor myself.

I don't think at first I will even post a link to these "podcasts". I will however mention my blog and videos in the podcast leading people here, then after I see how it goes post a link on this blog to the audio files. I don't even think anyone will be able to listen to them all, because in part some of the reason I am doing this is because I have so much to say and no one in real life to tell it too, or anyone in real life who cares enough to listen to it. At least online some people see, read or hear some of it or at least enough to understand. Though I must admit I find it frustrating when someone asks me a question I have already covered several times about my life, but hey it is what it is.

Someone online asked me once why I do this, meaning put my life out there like this exposing private things and thoughts. There are two answers. One is to help others not feel alone in their suffering, feelings or thoughts and the other more selfish reason is because I am here on this Earth and I want (maybe need) to be heard. Growing up I always felt I had so much to say and teach. I have had some very hard things happen in my life and I need to believe it had a purpose, that everything I have experienced and thought is meant for me to share with others. I also do not believe I will be on this Earth long (would be nice if I was wrong), so I want to say as much as possible while I still can. Maybe there is a third reason. I could be looking for the human connection that I always seek and have yet to find.

I get so many interesting emails. Most of them are from very kind people, trying to find their way in life..they share their stories and experiences with me and that is cool. Others ask questions, have suggestions (some of which they might wonder why I don't take ..trust me I have my reasons.) and some emails are from completely loony, out there people who scare me a little, but an amusing kind of scary.

Well anyway that is the ideas I am toying around with right now. I will be sure to update you with how it goes.

Sunday, October 18, 2009

Angry at myself

I am so angry at myself sometimes. I know I can't change the past, but why the hell did I abuse my body the way I have over the years. I wish I never drank or smoked. I should have been exercising this whole time and why in the past did I eat all those TV dinners and fast food??

It is weird because sometimes I feel out of breath while eating and for a little while after eating, yet on my treadmill I don't feel out of breath. Also when I stand up from my computer chair to walk to the kitchen or where ever my heart pounds in my chest for a minute and sometimes with that I feel a little out of breath, then it is normal again. I also seem to get out of breath while doing simple things like the dishes. I am not gasping for air by any means just out of breath and a tension in my chest sometimes. It also pisses me off that my heart can race from slight movement...often while laying in bed just the act if rolling over can make my heart speed up quite a bit for about 30 seconds...that is another thing..I can feel my heart beat way to much...I find it annoying.

It has been a month since I quit smoking and I have been doing the treadmill almost everyday for 3 weeks now. I also lift a 10 pound weight and do push ups against the wall and just started doing sit ups.

I have these crying spells because to be honest I am scared about my health. I am so sick of feeling crap and when I ask people online if they feel this or that with their own body they always say "No..you should see a doctor", well I have seen doctors as you all know if you have been following my blog this year. In fact I have yet another doctors appointment Nov 11th, so I can go complain about my out of breath feeling and how my hands turn a reddish/purple color when they are at my sides among other issues I am having.

The doctors have decided to stop my moms chemo for now. She was getting to sick from it and they need her strong so they can do the liver surgery. So for now she has no more chemo and then in 3 months they will do another CT scan and a PET scan. If she is strong enough by then they will do the surgery.

She has become very forgetful, even worse than she was before. My father never says much to me, which again if you have been following my blog this year you are aware of that situation. I am really alone in all this and I do not deal well with this type of stuff to begin with. On the bright side I am eating well. I changed by whole diet back to the healthy one I was on before the xanax withdrawal. I have been going to the supermarket almost daily, granted it is at night, but I still go. Sometimes I drive my boyfriend to work too when I feel well enough just to get out of the house.

I can't remember where on my blog recently someone asked me if I have tried Zoloft. No I haven't and unless I am on my death bed there will be no more anti anxiety or anti depressant drugs going into my body. I have been damaged enough. I do not feel these drugs are safe for anyone period (short of major mental illness, where you are a danger to yourself or others). I have experienced and seen too much. That comment of course will get me emails telling me how you have been helped, to which I say, good and heres hoping to you not getting some brain disorder or sudden cardiac death 5 years from now, that a doctor will just tell you or your family that it wasn't the pill/pills and these things just happen.

That is another thing about me that has to change. I tend to tread lightly on certain topics because I want all to be happy. I have learned as soon as you have an opinion half the world hates you, but seriously what use am I to anyone if I am wishy washy on my personal stance on certain topics.

Besides I am like the TV or radio...if you don't like what I have to say you can click the "X" on the upper left hand corner and I go away forever hehe.

I hope all of you are doing well in your lives.

Tuesday, September 29, 2009

I quit smoking

So, on Sept. 18th 2009 at 3:20am I smoked my last cigarette and quit cold turkey (11 days ago). The first few days were a bit uncomfortable, but after not to bad. I only get a craving here and there for one now and it doesn't last long.

Quitting is not as hard as other people or even yourself make it out to be. What I found to be helpful was... the first 3 days sleep as much as possible. I also found not thinking to be helpful. Don't focus on the fact that you quit. Soon as your mind starts to show pleasing images from the past, think of something else. Also the whole myth from anti-smoking sites that claim a craving will only last a few minutes is a bunch of bull. I had a craving around the third day that lasted almost 3 hours. I didn't think I would get past that, but I did.

My moms CT scan came back clear. The doctors couldn't see the liver cancer on the scan, so they ran a PET scan a few days later. The PET scan has also come back clear. She is too weak to have liver surgery, but the doctor said that is OK because they can't see anything right now anyway, so if the cancer is still there it is to small to be picked up on the scan. She will be having her chemo drugs changed soon, since she is having problems with her current cocktail. She will also be continuing chemo till Jan. 2010. I think she will have more scans in 3 months.

Tuesday, September 22, 2009

Sunday, September 13, 2009

Prom


Click The Picture To Make It Larger.

This picture was taken of me before my gf's prom in 1993 (I am the guy in the left of the picture). I was 17 years old (I am now 33). My anxiety had started about 2 years before this picture. About a half hour before this picture was taken I threw up in my parents bathroom. I was so nervous I cried. My mom offered me a shot of alcohol to calm myself, which I turned down.

I am currently trying to quit smoking yet again, by smoking a little as possible. Something that is happening that is scaring me right now is...every time I smoke I get a tightness in my chest. I tried to find other smokers who get this online, but I can't find any information. I also get cold hands and cold feet when I smoke now. The feeling in my chest is uncomfortable and my stomach turns. I know smoking is not good for anyone. I just wonder why this is happening now. I worry that my heart is clogged. Sometimes now after I smoke...esp. the first few cigarettes of the day I gag and get what I assume is anxiety because I have the urge to clench my teeth and feel shaky. You would think that would be enough to make me stop. However when I don't smoke for a long time the craving is so strong and I feel so miserable that I light up. Then I feel guilty over how stupid I am.

I have been crying on and off through out the days. I am not even sure why half the time. I know I am really lonely. Normally people would say to go out and meet people. I just don't feel well enough to do that with my tight chest and my anxiety issues on top of it. Besides if I meet someone new I am scared of scaring them off. I cry at the drop of a hat sometimes, plus I throw up when I get nervous and sometimes cramps (the cramps happen anyway with or without anxiety) how would I explain that?? What if they asked "Why are you so sick?" I would have to say "I don't know."

How did I let myself get into this situation? Why can't I just stop smoking? Why can't I get enough courage to get myself to a doctor and push to find out what else is going on with me psychically? Maybe I don't want to know or maybe I am just to scared. I really hope nothing is seriously wrong because of now how cigarettes make my chest tight and cold hands and feet. I honestly think I am scared enough from my anxiety to let myself die before I seek help and that worries me.

I feel like I am insane sometimes. I asked my father to bring me cigarettes today because I didn't feel well enough to get them myself. I asked him to drop them through my mail slot in my door. About 20 mins ago I heard them fall though. I do not shave or shower daily. It just seems to take more energy than I have.

I know I am depressed, that is a given. I just don't know why I am. I can't tell if I am so sick feeling and that has me down or if it is because I am alone most of the time. I don't feel loved by people, though I know people do...I just feel that the love I have is conditional as long as I am OK enough, I can't fall apart because then it will be to much for the few people I have in my life to handle and they will go away or be "disappointed" in me.

Why did I fuck my body up with everything I did over the years to it? I knew better just like I know better now and continue to make it worse. Seriously what is wrong with me? I need to somehow get a grip, I just don't know how.

Tuesday, September 1, 2009

Wore out and annoyed

My mother has been taken back to the hospital to be rehydrate. Hopefully she won't have to stay. She has been sick from her chemo and has a cold on top of it right now. She has not been able to hold anything down including water.

I called my old doctors office because I have been having major digestive issues since March of this year and if you want to count when it first started to become an issue bigger than normal it was in 2007.

I had a sigmoidoscope in Sept. 1994 and was told "I have a little colitis.", then was put on a drug called azulfidine for about a year. Nothing more was ever said and I was 18 and stupid so I never questioned it...it was never spoke of again. Every time over the years when I would get cramps I was told by the same doctor that I just had IBS (irritable bowel syndrome) and it was from "my anxiety". So today I decided to call to get what the actual results were from the sigmoidoscope he did and find out what the "little colitis" actually was.

The office called back to tell me the results said "ulcerative colitis vs. crohn's disease". So I asked well which was it and she said she would have to ask the doctor and call me back. So she called back to tell me that he said it was ulcerative colitis, that was "his impression, but I did not have a biopsy done.". So they are not 100% sure. This pisses me off on so many levels. First if you didn't know why the hell didn't you send me to a gastroenterologist. Second if you didn't know why did you put me on azulfidine for a year. Third why did you just tell me all the rest of the years that I just have IBS from "my anxiety".

Ulcerative colitis requires a colonscope every year to two years because it can cause colon cancer (The same cancer my mom has). Ulcerative colitis is not common and of course, that would be me since I seem to get all the rare shit. It happens to about 15 in 100,000 people. They don't know the cause and there is no cure. 25-40% of people with Ulcerative colitis have to have their colon removed. This I am not pleased about and that will not be happening because I will not live that way period ..there is not if, ands or buts about that.

I get cramps all the time, sometimes so painful I feel like I am going to pass out from the pain. My stomach is fucked. I have something going on in there and it is making me feel ill all the damn time. I just took all those antibiotics to kill the H. Pylori and still have to have a test to make sure it is gone.

Most of the time over the past few years it has not been anxiety that has kept me housebound, but more so because 90% of the time I feel sick and wore out. I never feel right at all. I was just told that is because I have "anxiety". Yes I do have anxiety, I am not dumb, but I also know the things that cause my anxiety issues, like doctors offices, dentists and medical test. I get nervous meeting new people, but I do not and never have lived in a constant state of anxiety. Over time I have allowed myself to be brainwashed with all that "it's just anxiety" crap and suffered for many many years.

Lets not forget my breathing issues for 2 years prior to my lung surgery was because of "my anxiety". Yea, then I had surgery and was fine.

So I called my mothers gastroenterologist today to make sure they had the camera pill, so I don't have to have the scope of my stomach, since I will most likely have a scope of my colon done and they do have the camera pill so that makes it a little easier.

Then downside to all this besides my intense fear of medical tests not to mention I also happen to know all to well what can go wrong with these tests (including death) is that they knock you out with benzo drugs. The very thing I should not be exposed to for 6 months to 2 years because of the prlonged benzo withdarwal I just went through. I am now just a little over 6 months off. If they knock me out it could reset the entire withdrawal leaving me in a state that I was in all those months of suffering. Why must everything come at me at once?

Not to whine, but seriously I am a really nice person and I don't deserve the treatment I have got from the medical community and by many people in my life. I shouldn't have to go through all this stuff alone. In fact why do I have all this rare crap happen to me??? Not only do I have it happen, but the very tests that have to be done is what causes my anxiety. I see people all the time having a life and doing things. They are enjoying their life and here I sit sick, so drained that I sometimes can't even take out my own trash. This is bullshit. I don't want to die and I do not want to be crippled by all this stuff. Why can't I just have peace??

Wednesday, August 26, 2009

AC Unit drama Update

At 5am this morning I woke up to my carpet still being wet. It was worse than I realized. When I moved the carpet there was a giant puddle under it.

So at 5am this morning I took apart my bed, and had to move the two computer desks, the large a/c unit and all the rest of my stuff out of my bedroom.

I then dragged a soaking wet heavy carpet and liner to the curb. My father came over and took it off the curb, since I couldn't just leave it there.

I was not ready for that much exercise and on lack of food it made the whole event worse. It took me 3 hours to empty the room and then put it back together. My heart was going so fast. It is now back down to 120. Hopefully it will return to normal soon. I get worried when I am that out of breath and it beating into the 160-180's that I am going to have a heart attack. Every time I stood up I felt light headed and kept drinking gatorade.

I asked my neighbor downstairs if her ceiling was OK. She was walking to the bus stop. She said she didn't notice anything, but would check when she got home. I really hope she doesn't get any brown spots on her ceiling.

I now have no carpet in my bedroom, just the old wooden floor that has been here since the 1940's.

If there is a devil, he really has it in for me this year.

On a positive note..the bedroom looks pretty decent without the carpet and at least now I can just sweep the floor.

Tuesday, August 25, 2009

AC Unit drama

As if I don't have enough to deal with my a/c unit in my bedroom must have been leaking water all day. I noticed when I stepped on my carpet and my socks got wet. So I turned it off and unplugged it. I really hope it drys up fast. I also am concerned that it has leaked through the floor and into the ceiling of the woman who lives below me. I am right above her bedroom and if her ceiling starts to turn brown or worse drip, then she will be calling the landlord. I really do not want to have to deal with that so I really hope it was mostly soaked up by my carpet. What worries me is it is such a large area. The carpet is wet/damp from one wall to the other.

Now I have no a/c in my bedroom and being on the second floor it gets warm in here. Looks like I will be sleeping on my couch till the temps drop. Thankfully it is almost Sept. and it will be cooling off soon.

I really hope the apartment complex people don't show up here. My apartment is not the cleanest right now. I am feeling better than I had been, but not good enough to keep up after this place. I really don't feel like being kicked out....so I really really hope this crap just drys. I opened the window in there and turned a fan on in hopes it will dry it faster.

Tuesday, August 11, 2009

So far still simi decent

OK so the deal is I am still eating very messed up. Not as much as I should, but not as little as I was. My resting heart rate is at its old pace most of the time now, still not that great standing, though sometimes it is more decent than other times. When I take a shower it still goes pretty high and mild exercise still gets me into the 170s which is way above my target heart rate...though just standing I am in my target heart rate.

I am crying less, though I am still doing it. I have waves of illness come over me for hours on end, though I had that before xanax, only more intense now it seems. The color of my stool is way off again, just yellow, no more brown, but I am still on Prevacid and now have gone from 2 pills a day to 1. The color has fluctuated on and off since March. The form has not been normal at all since I stopped xanax. Less cramping now however. (Sorry for the details).

My hands still turn purple at my sides, though not as drastic now, however it seems to have moved to my right foot.

Mentally I do not feel very balanced at all still, but much better than I was. For example, I drove my car the other night to a supermarket parking lot, had my xbf/bf come over and even had a visitor for a short time stop over briefly. This would all have been impossible Feb-June. It wasn't till April that I could even stand to be chatting online. Back then I kept having to cancel my cardiologist appointment because I would lay in bed shivering so bad, yet I was not even cold. I could not function. At that time I didn't even feel human....subhuman is even to kind of a word for it.

I have these moments where I feel like my body is back the way it was months ago and that usually makes me cry, but unlike back then it seems to lift now.

I almost made the mistake of going on an antidepressant last month because sometimes it all feels like to much to deal with. When everyone thinks you are crazy and you are the only one who thinks you're not, when everyone tells you the meds didn't do this, and you are the only one who believes they did, you start to doubt your own sanity.

I am glad I didn't take anything else. I have bad anxiety yes. I have for many years and I assume I will continue to, but that is something I will have to address should I someday get completely well from the nightmare I have gone through. I say nightmare a lot and most people might read that as a bad experience. I want to be clear, imagine your worst nightmare, only you just never wake up..hold that thought and that is what I have lived in so far for 2009...a very long, bad trip...which has not ended, nor do I know if it will come back full force at this time.

My fear is it will come back. I know this comes in waves with "window periods" of feeling well. I just hope I am closer to the end of it.

I have decided to make a DVD or several DVDs of my experience with coming off this med, the horrible treatment I got from doctors and the complete hell I went through. I am going to leave the DVD in public domain so people can copy it as much as they want and/or sell it. My hope in doing that is so that this message will get out to more people. No one should ever have to experience what I have and still do. Also the tens of thousands, if not more who have suffered on countless other drugs, something is seriously messed up when people are suffering from the treatment and no one is doing a damn thing about it. Just go to google and type in "damaged by medication" or "ssri horror stories" you will find people in pain, desperate and suffering. All with a similar theme as mine, doctor denial, yelling doctors and just sick and lost.

I have complete lack of trust in doctors now, something I will have to work on. My only hope is my body can repair and damage that this has caused and I just don't drop dead...because sometimes that is exactly what it feels like.

For the record, my mother is on chemo, she is having some health issues from it, she told her doctor and this is the reply..."hmmm, I never heard that before, I don't think its from the chemo...why don't you take Ativan for your nerves." And she does..my own mother saw what these pills did to me, though she doesn't believe it, so she pops the benzos.

Thursday, August 6, 2009

Life Continues

I finished taking all the antibiotics for the H. Pylori on Aug. 3rd. Up till that point there had really been no difference in me, other than the fact I seemed to get more depressed on all those pills. However the Prevpac lists depression as a possible side effect.

I hardly ate the entire time on the pills and got very weak. My heart rate stayed high. The day after I finished all my pills, I felt awful, but I just wanted to go home to my apartment. I had not stayed there since April. As much as it bothers be to be alone right now, I just needed time away from my parents.

The day I got to my apartment I was so weak. It was the first time I drove my car since Feb 22nd. It was a bit unnerving for me, so thankfully I only had to drive a mile. I parked out front, because to be honest I didn't feel strong enough to walk from the parking lot.

So I returned to my apartment Aug. 4th. With an even higher heart rate than normal. 120 resting and 160 standing. I was disappointed, wore out and so I cried for awhile alone in my apartment. The heart rate stayed high till 5am the following morning. Then it went down to the 80s..then 70s.

Aug. 5th my heart rate was completely normal...my old normal before any of this happened to me. It was also normal today. I don't know if it will last, but I am thankful for it and almost to scared to feel happy, because I don't want to be upset if it goes back up again. Though if it does I know I will be.

The past two days I was able to eat as well. Today I even ordered a pizza and bread sticks of all things. I have consumed about 2000 calories today. For the past 6 months I am lucky if I even got 1000 a day, many days it was a struggle to get 500. Again I am happy about that, but sorta waiting for the other shoe to drop. I guess after 6 months of intense illness you lose hope and become shell shocked.

I guess if something bad starts up again, I should be thankful for the past few days of feeling almost like my old self. It was nice to feel me again..almost me...but close enough.

I was able to finally exercise today. I suddenly had energy to spend so I walked on and off my treadmill for an hour total and after each time my heart would go to normal..in fact after exercise today my heart rate was lower than when I usually stand up.

I have this fear of fainting again since I did a few months back in my apartment. I think about it often actually and it is a problem I need to some how someday work out for myself.

Looks like me an my xbf will be getting back together or at least trying too. It will however be an open relationship, for now anyway. He is going to keep his apartment since he just signed a lease. Then if all goes well between us move back in next year.

The open relationship will be hard for me because to be honest I am a jealous person, but at the same time I have been so alone and have missed him terribly. We have been talking on the phone more often and that has been nice. He is coming to see me this Saturday.

I really need him in my life right now, esp. with my mom being sick from cancer and my father being no help emotionally to me. There really is no one else and my xbf knows me so well. So hope the best for us because I really need someone right now.

My mom had chemo this week and is sick, but seems ok so far, better than normal. I know she will see her doctor soon for a PET scan to recheck her liver to see if the chemo is helping and to decide when they will want to do surgery.

I find people ask me often if I am OK and I say yes. Deep down I am not ok at all, I think I just say OK and fine, because its just what you say...but to be honest what I have gone through and continue to go through I can't ever see feeling OK again. Maybe in time that will change. I know my view of everything has changed. It is like someone took the world I knew, shook it all away, completely removed any sugar coated ideas I had left of life and left me naked shivering in the cold, while everyone else is still blissfully unaware of what I now have come to understand. Thankfully I am sure there are others like me that someday I might meet and be able to relate. I think the scary part is I am now left afraid to be happy and left with the horror that everything I have gone through could be way worse. It can always be worse. Life has become sorta nightmare like for me, right now the nightmare seems at low power, but any minute the monster could return...keeps me on edge.

I have a lot of worries about cancer now that I didn't have before. Seeing all of it first hand...well I can't even begin to tell you what having cancer means unless you have watched it or had it...I also know I lack the will and the strength to go through it. All I can do is hope and wait that it never arrives for me.

I like to exercise, it makes me feel like I am actually trying to do something to help myself, but I must admit ...it scares me. I am worried I will have some heart event while doing it or that I will pass out. I will continue to do it anyway. It needs to be done...not doing it in the end is worse.