Monday, July 20, 2009

Just a quick update

My mom got out of the hospital and was able to go to the wedding in VT that she had been hoping to get too. I was alone for 2 days and that was a bit unnerving for me, but I made it.

My mom is at the hospital getting chemo right now, then she will come home and the nurse will hook her up for 3 days.

I start taking all those antibiotics tomorrow to treat the H. Pylori and if I can handle them I will be on them for 14 days. I am not sure how much I will be online. It will depend on how sick they make me. Lets hope I don't get sick at all. That would be nice for a change.

I am still concerned about how my hands turn purple while they are at my sides or while I am typing.

My next step if I can get through all the pills is to see a gastro doc to make sure it is gone and talk about my other gastro issues.

I have been living on rice and bread for about a week and I am getting tired of both, but I was so sick of the fruit I was eating for months that I finally cut back on that.

I have been so tired, which is why I have not been writing in my blog a lot. I sleep between 12-16 hours a day. Even then I do not feel rested. I am really hoping these pills take care of some of what is going on with me. I want a life. I am so bored.

I was looking out the window yesterday and was watching this guy doing his garden and it pissed me off because I want to be outside and not feel like crap all the time. I am mad that I have been this sick this long and any results I have got is from me looking crap up and then having the doctors check. I should not have to do this myself. They are doctors and I am not.

Anyway keep me in your thoughts and hope I get threw my 8 pills a day.

Sunday, July 12, 2009

My mom went back to the ER

July 11th was my moms birthday. She spent it having very bad cramps again from the chemo. I went to bed later in the afternoon. She had just got done throwing up and was moaning in her bed right before I laid down. When I woke up at midnight, my father told me that he had to take her to the ER again. They gave her morphine for the pain and did a CAT scan. They see a blockage again and that means this time they might actually do the surgery.

She had really wanted to go to my nephews wedding in VT this Friday, but I don't think that will be happening.

I went to the doctor and have been put on stomach pills, my heart rate while on them has been a little bit better, still running high, but has come down about 10 beats per min on average, sometimes more.

The 20th I start taking pills to kill the H. Pylori infection. It is 8 pills a day. 50% of people can't tolerate it and have to stop. I really hope I can. I want to kill it.

I then have to go to a gastro doc to make sure it is dead, since it has only an 80% clearance rate because H. Pylori has become immune to antibiotics. Then after all that I am most likely going to have to have breathing tests and a CT scan of my lungs. Depending on my heart maybe a 2nd visit to a cardio doctor and a possible colon scope (which I am putting off as long as possible because they knock you out with benzos and I shouldn't have any for 6 months to 2 years, it all depends on my body or the withdrawal can start all over) because my ulcertive colitis might be back in an active phase. I might even need a stomach scope as well. And maybe a sleep clinic since I wake up gasping for air sometimes. I just don't want to die and being this sick really messes with my head and makes me very depressed. I assume it would upset most people.

I am not eating a lot, but I am eating more than I was since taking these pills.

Wednesday, July 8, 2009

Anti-Anxiety Drugs Raise New Fears


Anti-Anxiety Drugs Raise New Fears

By Katie Balestra
Special to The Washington Post
Tuesday, June 30, 2009

Stan Starr, a 54-year-old financial consultant, sat in the back of the room filled with blue chairs, quietly tapping his Converse sneakers on the carpet. The 12 steps to recovery, enshrined by Alcoholics Anonymous, were printed in large black letters on a wall. But Starr was there because of a different drug -- a class of prescription medication called benzodiazepines.

Five years ago, he couldn't sleep at night, his heart raced, he had wrenching stomach pains and felt as if his skin were crawling off his bones. He was in the midst of a 2 1/2 -year battle to withdraw from the drug Klonopin, which his psychiatrist had prescribed to him for anxiety. "I went through sheer living hell," he said. "I didn't know if I was going to make it."

Benzodiazepines, often prescribed to manage anxiety, panic and sleep disorders, include Xanax, Ativan, Valium and Klonopin. Originally pushed as an alternative to barbiturates, their use has grown rapidly in the past 30 years. But critics say their long-term effects have gone largely unaddressed. Health professionals and consumers are increasingly recognizing that taking the drugs for more than a few weeks can lead to physical dependence, often ending with a grueling withdrawal.

The benefits of the drugs have been heralded by both physicians and patients. On, a Web site where consumers can rate medicines, one person wrote in April that Xanax was the "best thing that ever happened to me." Another wrote in March, "This drug saved my life."

In 2008, 85 million prescriptions were filled for the top 20 benzodiazepines, an increase of 10 million over 2004, according to IMS Health, a health-care information company based in Norwalk, Conn. Those getting prescriptions in 2004 included 66,000 veterans suffering from post-traumatic stress disorder, according to a study released by Department of Veterans Affairs physicians last summer.

Worldwide revenue for Xanax rose to $350 million last year, up nearly 50 percent from 2003, according to pharmaceutical company Pfizer's financial reports.

Critics say benzodiazepines are broadly over-prescribed and can have serious side effects. Some patients find themselves on high dosages after a few years because their bodies need more of the drug to get the same effect, according to health experts.

Medical guidebooks say the drugs bind to receptors in the brain and spinal cord, intensifying the effects of the neurotransmitter gamma-aminobutyric acid, or GABA. "So pretty much it kind of tells your brain to slow down," creating a calming effect, said Stephanie Licata, a Harvard Medical School behavioral pharmacologist who studies the medications. In some people, that can lead to memory loss and impaired motor skills.

John Steinberg, a physician and former medical director of the chemical dependency program at the Greater Baltimore Medical Center, estimates that 10 to 20 percent of those taking the drugs for extended periods will have problems with dose escalation and physical dependence. "For a serious side effect, that's a fairly large, significant number," he said. "It is, after all, a devastating and debilitating adverse effect for those who experience it."

Benzodiazepine dependence has received greater attention in Great Britain than in the United States. In 2004, the British government took a stand in limiting prolonged use, issuing advice to all doctors that the drugs should be prescribed only for short periods.

Heather Ashton, a professor of clinical psychopharmacology at Newcastle University in England, who has studied the drugs since the early 1980s, said long-term use also affects one's mental state. "For one thing, which is what people regret most, there is a breakup of family life, because you're in a sort of daze; you don't realize that you're neglecting your children, or not listening to them or forget what they're saying," she said.

Some doctors have been turning to selective serotonin reuptake inhibitors, such as Paxil, to replace benzodiazepines in the treatment of anxiety, although those antidepressants may also produce withdrawal symptoms. Steven Daviss, chairman of psychiatry at the Baltimore Washington Medical Center, said SSRIs are a safer alternative for panic and anxiety disorders, with less risk for dependence and a less dangerous withdrawal.

The ordeal of withdrawing from benzodiazepines can rival that of kicking a heroin habit, according to some who have had success. Abrupt withdrawal can result in hallucinations, seizures and even death, experts say.

Last year, after jail officials in Cleveland denied R&B singer Sean Levert's repeated requests for his Xanax, he hallucinated for hours and ultimately died from the effects of withdrawal, according to the coroner's report cited in court records. His widow sued the corrections center and medical staff. The suit is pending.

Some seeking to withdraw from the drugs have turned to online support groups. Debra Standiford, a nurse who leads a benzodiazepine support site on the Yahoo Web site, said membership has grown to 3,800 people from 200 in 2000, gaining two to three members each day.

For Starr, the financial consultant who attends addiction meetings, his withdrawal from Klonopin was life-altering. He said he started taking the drug in 1996, after experiencing anxiety about a pending divorce. A psychiatrist he saw had recommended the medication. "I was overwhelmed by life at the time," Starr said. "I didn't really feel that mood-altering substances were necessarily the answer to life, but at the time that was my alternative."

Soon after starting to take the drug, Starr's anxiety began to disappear. But over time, it came back, and the medication was not as effective. Six years later, he said, he went to see a new psychiatrist, and she told him he needed to get off Klonopin, that he had become addicted. "It was like a shock to me," he said. Shortly after, Starr made the decision to withdraw and began to taper off the drug. He felt withdrawal symptoms immediately and took an extended leave from work. "It was ripping me apart inside," he said.

After taking his last pill in February 2002, Starr said, "the fireworks started." Over a year and a half, he could sleep for no more than a few hours at a time, his heart raced and he had night sweats. Sometimes he couldn't tell if he was speaking clearly, and he completely withdrew from family and friends.

No one could tell him how long the symptoms would last. "All I saw was horror, and I didn't see any way out," he said. After 2 1/2 years, he started to return to eight hours of sleep.

As benzodiazepines grew in popularity, studies began to document their abuse potential. In 1979, the Senate Subcommittee on Health and Scientific Research held a hearing on the drugs, where Sen. Edward Kennedy (D-Mass.) said, "If you require a daily dose of Valium to get through each day, you are hooked and you should seek help."

The next year, the National Institute on Drug Abuse declared that withdrawal from the drugs was in fact mild, "seldom leading to any serious consequences," and physical dependence was mostly avoidable. Pharmaceutical companies began releasing new types of benzodiazepines, marketing some for panic attacks and sleep problems.

Robert DuPont, former director of the National Institute on Drug Abuse, who has written several books on addiction and anxiety and maintains a psychiatric practice in Rockville, said the drugs are widely successful in treating panic and anxiety. He said that 90 percent of his patients have no difficulty taking the medicine, and those with problems are most likely to be people who've had issues with addiction in the past.

"The typical patient that I see with anxiety is taking [benzodiazepines] well within the green-light zone," he said. Addiction is an entirely different issue, having to do with a person "essentially falling in love with a chemical high," he said. "For those people, they're booze in the form of a pill."

Some physicians recommend that people experiencing anxiety and panic attacks exhaust other options before turning to the drugs. According to Jerilyn Ross, the director of the Ross Center for Anxiety and Related Disorders in Washington, cognitive behavioral therapy is one of the most effective ways to treat anxiety and panic disorders; she said it is effective on its own 90 percent of the time.

Tuesday, July 7, 2009

New Doctor Time

So I went to see my primary care doctor today, since I am still throwing up, fast heart rate and the list of other problems I have been talking about for months now. I told him how I just went 9 days on hardly any food and most was liquid. How I lay in bed all the time because my heart rate has been so high when I stand up, how I am wore out and can not basically do this anymore. To which he said nothing.

Now when I first saw him, I told him I tested positive for H. Pylori when I was in the ER back in March and he said "Oh a lot of people get H. Pylori and it is not something that we have to treat unless it causes a problem and I don't think you have a stomach ulcer because you would be in more pain." For the record H. Pylori does a lot more than just cause ulcers, it can cause chronic gastritis and stomach cancer. It is also being linked to depression, heart disease and bowel cancer.

So today when I asked him if I could do a bowel sample and test to see if I have an active infection of H. Pylori to confirm it he said "Oh well there is no bowel test for it, just a blood test and a scope for them to look in your stomach." I informed him that there was a bowel test and a breath test and he said "Well there maybe, but I haven't heard of it and they are not accurate." OK first off they are very accurate and they do exist, go to any gastro website and it is what all the gastro doctors use both to diagnose H. Pylori and to confirm that the infection has cleared after treatment.

He then asks me if I have H. Pylori and been treated for it. (note at this point that he was told before that I had it and he saw no need to treat it). I tell him yes I was told I had it in the ER back in March and he says "Oh well if you have H. Pylori we have to treat it." ummmm OK yea.

I tell him about my dark urine that I have been having on and off, so he gave me a urine test which was fine and also normal color urine. So I got him to give me a cup for when it is dark so they can test that.

He then wrote me a script to treat the H. Pylori (which I can't take till my parents are back from a wedding in VT that they are going too. So I will start taking it around the 22nd of July in case I react to it.) He also wrote me a script for an acid blocker since I told him that when I took the TUMS my heart rate sometimes would go down and how it no longer hurt to breathe. He said maybe I have GERD. Well that is all fine and good except if I treat the H. Pylori there is a good chance if I have GERD it will get worse since H. Pylori lowers the stomach acid and killing it will raise my stomach acid back to its old levels. So this is going to be a gamble.

I asked him if H. Pylori could be raising my heart rate and he said "Oh well it could, maybe if you have an ulcer, but it may not be doing it." Then I said "OK I know everyone thinks my fast heart rate is from anxiety, but I am not nervous 24/7 so why is my heart beating so fast?" and he said nothing.

At that point I started to ask where he wanted me to put the urine sample when I was done, but before I finished my sentence his hand went on my shoulder and he started "Dear heavenly father............blah blah.......maybe we are on to something (referring to the H. Pylori and my heart).....blah blah ...AMEN." OK first off where do I put my urine sample and what does he mean "We"? We are not onto anything. I am guessing on my own and the only thing you did was write a script for something two months ago you said didn't need to be treated.

I also have been having this pain when I push on my right side by my kidney area, so I bought that up and he told me "Well there are bones and muscles there." Well you don't say...I never knew...he guys I have bones and must be how I have moved around all these years. That was it he never checked...good thing after he told me I have bones and muscles there the pain stopped....NOT!!!!

So I am tried of the praying people (I am not anti-God) and going to find another doctor after I take these massive amounts of pills and hope to God that I don't end up sicker.

I am tired of being sick, it is played out and I am bored with it. I feel like I am going in circles. If he does not remember nor had the information in my chart that I have H. Pylori then how can I trust that he remembers how sick I have been since coming off xanax and how after I fainted on the paxil my heart rate went up and has stayed up??

Finding a new doctor will be a pain, by this point in time my story is 6 months long and has a lot of details, they don't seem to listen or understand any of it.

Sunday, July 5, 2009

H. Pylori, Medicaid and fuck you list.

So I got a maybe answer for myself as to what is happening to me in part. I by far have many problems, but I am pretty sure I have figured some of it out on my own as usual.

Last night my heart rate was 106 and I was unable to eat all day. At 3am in the morning I was throwing up as quiet as I could, so I wouldn't wake my mother up. Soon after I threw up my heart rate was 118.

I went into the bathroom closet and saw Ultra Strength Tums. It said take two, so being mad and irresponsible I took four. The last Tum I sucked on till it was gone. Shortly after this my heart rate fell into the 90s and minutes later into the 70s. 15 minutes later I felt hungry out of no where and made a sandwich. I noticed when I took a deep breath it no longer hurt and I started to feel emotionally well as well. This effect lasted a few hours and then I was back to being sick feeling.

Tonight I repeated this experiment. Only my heart rate did not fall as fast. It took about an hour for it to go from 107 to 86. However I was smoking before I did this, so it is possible the cigarettes that I smoked kept it high.

Now I have tested positive for H. Pylori on one of my ER visits and yet nothing has been done about that. I assume I have an ulcer and the pain from it is stimulating my vagus nerve and causing the high heart rate. It would also explain why for quite sometime I have had all these "food intolerances" that have no rhyme or reason and cause my heart to race. Yet another thing I have been telling doctors and nurses for years and just get a funny look. After all everything is "Just Anxiety".

I am going to demand a bowel sample test Tuesday to confirm an active H. Pylori infection and then if it comes back positive again, I will treat it. I also am going to ask for a bowel sample test to confirm there is no microscopic blood esp. since I was told I have Ulcerative Colitis in 1994.

Xanax can be used as an anti-nausea drug and it could be the whole time I was on it it was suppressing my stomach issues that were going unchecked for years now. Hence coming off xanax allowed for the vomiting to start again or the withdrawal aggravated it further. The Paxil I took that day that I fainted may have irritated the lining of my stomach further causing the fast heart rate I have continued to have since that day. Again I am guessing at all this and frankly I should not have too. This is the doctors job and not mine, yet I find myself for hours a day trying to put the pieces together.

Again there is so many issues going on, and this is only part of it, yet I am thankful I may have found an answer to some of it.

At this time I would like to give a big FUCK YOU to the following people and hospitals for making me feel crazy and ignoring the severe suffering I have been going through for months now.

1) Dr. Theodore H. Zeltner, MD
Suite 114
2 Clara Barton Drive
Albany, NY 12208

You by far get my biggest Fuck You because I went to you at my sickest. You half ass listened to me. Told me I was not making any sense and when I asked you for a 24 hour heart monitor, you yelled and said "No you don't get to ask me for anything." You also slammed your notes shut and stormed out like a giant infant when I refused more psych drugs because I was too sick to have more side effects at that time. You half assed read the information I gave you and took our private matter into the hall for others to hear. When I told you how I fainted you said "So what you fainted." When I told you how sick that dose of paxil made me you said that I was wrong and hyperventilated, which was not the case at all and told me how you are "the expert". You aren't an expert, you are just "The Asshole."

2) Albany Medical Center ER
43 New Scotland Avenue
Albany, NY 12208

You get a fuck you because you were my first stop, when my heart rate went to 140 and stayed there. I explained to you that I have had anxiety and panic attacks for 18 years and this had never happened. I explained to you it started after the paxil dose and how soon after I came off xanax I was unable to hold down food and had been vomiting for weeks. Your wisdom for me, in the absence of any blood work and just an EKG was "Eat pizza.". This is what you told me when I tell you that I can not hold down food and many liquids. Then you gave me a little print out all about panic attacks as if after 18 years I had no clue what they were and sent me on my way.

3) My father gets a fuck you and a continuing fuck you for watching me suffer and doing nothing to try to help me. You could at any point in time stood up for me and told these doctors how sick your son was and this is not how I have always been. You instead have ignored me as I cried, vomited, couldn't eat. You watch me as I sit in a bedroom all day long and never once ask how I am feeling and if I actually offer the information about how I feel you walk away. You have yelled at me about being sick and have made this whole experience more awful than it has had to be.

There will be more on my fuck you list as time goes on, but that is enough for now. I only hope that I get some answers soon, because I do not want to be sick anymore. I am tired of tracking down what is wrong with me and I hope to God, that the stomach issues is a major cause of all this.

On a bright note. I have health insurance now. I actually got medicaid, for the next 6.

Friday, July 3, 2009

Dear God 2

Dear God,

First I want to thank you for letting me eat that can of Ravioli yesterday and some other things. I really needed the food. I have not ate very much today, just liquids so far, so can we make this a regular thing where I can eat some everyday. I would be happy with a 1000 calories for now. I need to stay alive and not get weaker.

Why does everyone think this is all in my head? I actually had someone tell me last night online that I am only getting worse mentally and better get a hold of myself or I am going to end up six feet under. I hope that is not true. What exactly am I suppose to get a hold of? Just stop my heart from beating so fast, make my breathing issues go away, stop vomiting, make my body take food when it won't, having chest tightness, make people magically appear that are stable, make my father be a father? These are not made up "all in my head" issues.

I did get an email from a woman that said it took her six months for her heart rate to return to normal after xanax. I hope that is true for me, but I am not sure since mine seemed to have gone up after that single dose of paxil. I don't know what pill did what anymore, just that they both messed me up. I will continue to ask you to reverse the damage done by those medications.

I am tried of explaining myself over and over esp. to my parents. They can't understand why if I am burping up acid why I wouldn't take a drug like pepcid. How many time do I have to tell them that you can't take those kind of drugs two weeks before you have a bowel sample for H. Pylori or it can give a false reading? I don't pull this information out of thin air..I am tired of people thinking I am completely mad.

I do not deny I have bad anxiety, but this is not what is happening to me, however being this sick, alone and no one getting this is not in my head only fuels the anxiety, as does having to go through more tests with a bad anxiety problem. I am not housebound from anxiety right now. I am housebound from being sick. I am not going to run around town on little food and a heart rate in the 140's so people can smile at how well I am doing because I am done acting. I need you to give me the strength to control my anxiety and depression from all that has gone on, is going on and might go on, so people stop thinking all this is in my head while I am suffering.

I need you to start sending people into my life, ones that are not drunk every night, running around partying, but good solid people, so I can have someone to talk too that will either understand or at least be an outlet for me to open up too, so I don't feel so alone in this situation.

My urine is turning dark as well, not all the time, but I am constantly drinking fluids so I don't understand why. Can you fix that as well?

And when my father made that statement that "Well talking to you won't help anyway." and I said "Really, talking to me wouldn't help to make me feel more comfortable and less alone in this situation?" and he continued to eat and my mom just said "I have cancer and I am not going to fight with you." and then my father said "I am not going to fight with you either." Why can't they see I am not fighting. I am scared and alone. I have no support system in place at all. At this point I feel to ill to even start building one...and where would I even start? Please help me to build one. Online people are nice, but they just aren't here.

Thursday, July 2, 2009

Dear God 1

Dear God,

From now on I think I am going to write this blog to you. I don't care how crazy people think I am for doing it or what they think of me.

God I am so sick, and I have ate hardly any solid food in days, just some toast yesterday and some toast this morning. I couldn't even get to my doctors appointment yesterday because I was vomiting and sick. I need you to give me the strength to get to my next appointment on Tuesday.

I have been so sick to my stomach since Jan. 21th, my heart has been racing since March 4th and we both know that the xanax triggered all this and then the dose of paxil finished me off in March the day I fainted and the day my heart has never been the same since.

I need your help despite the fact I am angry at you sometimes. I am angry because you have the power to just heal me all at once and for some reason you won't and I have been suffering for 5 months now. I need you to give me the strength to get through this because I am so tired. I sleep all the time now. My parents who are the only ones left and doctors think I am just depressed. I need them to see I am only this depressed because I am so sick and so scared. If anyone was this ill and no one was there for them and no one believed them I am sure they would be depressed too.

Besides the strength to go on I need the following things. I need to eat. I need to feel hungry again. I have had this same can of ravioli sitting next to my bed for three days. I would like to eat it today. I have no power over my smoking and just keep doing it despite all the health problems I am currently having. I need the strength to stop and not become like a robotic zombie and just light the next one up. Of course I am scared to even ask you to help me stop smoking because the last time I did I ended up in the ER the following morning and had to end up having lung surgery, so I have been scared for years to ask you for much. Please don't hurt me.

Please keep my dreams good ones. The past few days they have been ok, in them I am usually eating and out with people or seeing a movie. My dreams are my only comfort right now and really the only escape I have.

Please let some doctor listen to me and see how sick I am. When I see him next I am going to ask for a conformation test for the H. Prlori and if that one is positive as well I am going to ask to be treated. Please let him give me that test and treat me. However I know that in some people these high doses of pills can cause horrible side effects including psychosis, please protect me from that, just let me get through it and not end up worse than I am now. The only reason why I want to treat it is because I can't help, but wonder if that is the cause of me staying so sick. I only found the word H. Pylori 20 minutes before I went to the ER back in March and lied saying some doctor wanted me checked for it, so they did and it came back positive.....was that a sign?

My mom is so sick and as upset as I am that she can't help me because I need her more than ever now I understand. Please heal her and keep her comfortable.

If this is a test I feel like I am failing it....please help.