Thursday, April 30, 2009

Another appointment

The therapist called back today and I see her on May 5th at 1:30pm. Tomorrow is the heart doctor and next friday is the gastro doctor. I feel like I have endless places to go and endless paper work to fill out for social services and doctors. Truth is I am so tired I just want to stay in bed. Sometimes I am so ill I don't want to live and I don't want to die..I just want to crawl in a ball on the floor and give up.

When I woke up today I felt so weak. I still have not been able to eat much today and I did not end up eating that much yesterday either. Soon after I woke up my whole body ached and I took tylenol which only helped some. I sat at the kitchen table where my cat was sitting and just cried till some of it passed and the tylenol took effect.

I hope I feel better tomorrow because I have to be at the heart docs by 1:50pm and I am not usually doing that well around that time.

I sometimes want to be put into a coma till they figure out what the hell is wrong with me.

I cut my own hair and I have not had the energy to do it in such a long time that I look a mess. My mom keeps saying "Why don't you cut your hair so you look better for the doctor." I don't want to look better for the doctor. I do not care what he thinks of my hair. I am freaking sick as hell and that is the last thing on my mind is my hair. I am so weak that I can't do much of anything. Just picking up a few clothes to put in the washing machine so I have something clean to wear tomorrow gave me head pressure and made my heart rate spike causing jelly legs.

My breathing has been off for a little while now and not sure if I am going to end up seeing a pulmonologist next. I would just go back to the same place that did my lung surgery.

Let's just hope the heart doctor has good news or some insight without having to put me through more tests esp. if it one I can't do because of my phobias.

Wednesday, April 29, 2009

Today is my birthday

Today is my birthday. I am now 33 years old.

I was hoping my xbf Keith would remember it. His was last week and I gave him a call and an email saying happy birthday. Today I got neither, so far anyway. My parents gave me a card.

I spent several hours today filling out all the SSI disability forms online. I hate filling those out. It took hours and at the end of it I ended up having a really bad weak spell from not eating as much today. I had to force myself to have a can of chicken rice soup and an apple juice after that.

Tomorrow when I have a moment when I feel better I will fill out the medicaid form.

My heart is still fast, but so far today it has not gone above 117 that I am aware of. I had a lot of shoulder pain, chest and back pain around 6pm so I had to take some tylenol and I cried for about a half an hour over several things which included the pain, my heart and Keith not remembering my birthday.

You would think I wouldn't care if Keith remembered because he left me a little over 5 months ago. I think it is because at one point he said he would take care of me the best he could and that he would be there for me. Now when I need him most he is gone and I am left at my parents because I am too sick to be at my apartment. Maybe someday I will meet someone else I click with. In my head I still feel like Keith is my boyfriend and in many ways I am waiting for him to come back even if I know that won't happen.

I have no idea what I will do with my apartment because if I get well I will still be there alone. Being alone all the time is not that healthy esp. for me who is house bound a lot. If something happened to me there there would be no one there to help or even coming home. Getting a roommate would be fine, it doesn't have to be a boyfriend, but I am hard to live with. I get bad insomnia and up all hours, I throw up at random and I am home all the time. Who wants to live with someone who is sick a lot? Anyway I don't really want to lose my apartment, but at least I have time to figure it out.

I would like to quit smoking completely, but last time I did that I ended back up in the ER so I am a little scared to try again, but I am thinking about it. It seems like a nice time to quit, lets ignore the fact I am having all these health issues, it just seems like a nice time to quit in general being that it is my birthday and I just turned 33. It would be an easy quit date to remember. I am not sure maybe I will try it and see what happens.

The heart doctors office called me today and wanted me to call them back. They did not say what it was about and had me concerned. I called back 3 times and finally got someone who would tell me why they called. My appointment Friday was for 1:40pm and they had to move it to 1:50pm and wanted to know if I could still make it. I was thinking are you kidding me? They were calling for a 10 min time change...and could I make it?? No I can't make it the 10 min change is just to much for me to handle lol. What the hell is wrong with people? So I just said yea that was fine.

Then I called my new primary care doctor because he wanted to see me around May 12th. They said he is booked and I can't see him till May 29th at 4:20pm. It is like OK fine I will just suffer till then or die which ever comes first.

I then called to make an appointment with the therapist in his office. I got her voice mail, left a message and she never called back.

So that was my birthday.

Tuesday, April 28, 2009

I went to the doctor yesterday

I went to the doctor yesterday. I have to say the building creeps me out. It is very old and since this doctors office helps people with next to no money it does not even look like a doctors office. Their is no carpet, no plants, it looks like an old school house or a convent where nuns use to live. The walls have old yellow paint that is chipped or worn and old wooden floors. The exam tables are the old 1970 wooden looking ones.

I was completely freaked out sitting there with my father while I waited. I met with the doctor and he talked and listened to me for an hour. He wrote down all my history and everything that has been happening recently to me. He has never heard of protracted benzo withdrawal, but he did not discount it either and took all the information I gave him and he says he is going to read all of it. I hope he does actually read it.

He took my blood pressure and heart rate while standing and while sitting and noted the drastic difference and that either way my heart is running high. He offered to put me back on xanax if I wanted to and I said no because I am pretty sure that is what has caused all this. He also is the first doctor to say he does not think my heart rate is caused by my anxiety problems because it is too fast, constant and changes to much when I stand up.

He has a therapist in his office that I can see if I want and I told him I would try talking to her because I am not coping well with everything that I am going through. So I will call soon for that, but I will make it known there will be no psych meds I am willing to take esp. right now when I have no clue what is wrong with me.

He said he is perplexed and he wants me to see him in a few weeks. At the end he asked me if I minded if he prayed for me and I said sure thinking he just meant "I will keep you in my prayers", but then he laid his hand on my shoulder and closed his eyes and started "Dear Lord, please keep Brian ...." and I thought ..oh that kind of praying for me. His cell phone rang during his prayer and my mind thought "I wonder if that's God calling." hehe.

So here is the thing. He is nice, he helps poor people around the world who are sick, he is a doctor who is not into money so that is good. I don't know how comfortable I am yet going there. Other than noting all my illnesses and my heart rate nothing was done. But then no one knows what the hell is wrong with me.

I see the heart doc this Friday.

Today my heart rate is not as bad as it was those other 2 days. It is still running high and I threw up today for the first time in about a week. I fought it hard too, but eventually the gagging had crap come up in my mouth so I had to do it.

I also had a very long dizzy spell today while in the hallway by my parents bathroom. I had to stop walking because it felt like I was in an elevator or a fast moving train. That was about 15 mins before I vomited. I don't know if I have a fever because I have not checked today...truth is I just don't want to know right now.

Timo my cat has completely adjusted to living here and gets along great with both the cats now. He sleeps next to them and plays with the kitten.

My mom is doing well still and though her pathology report is back, she doesn't want to know, so she is not calling. So she won't find out till May 11th when she sees her doctor again. I wish she would call so I would know if everything is ok or not. She doesn't want to know because she wants to pretend everything is ok and have worry free days till she sees her doctor again.

Sunday, April 26, 2009

Wanda Sykes On Healthcare

My mom can come home tomorrow

The doctors said my mom can come home tomorrow. So in the morning my father will be going to pick her up. She said that they will discharge her around 8am or 9am in the morning. Tomorrow or the next day she should have her pathology report back so she will know if her cancer is gone or if it spread. Hopefully it is gone.

I see the new doctor around 5pm tomorrow night. I only hope that I feel better tomorrow than I do today so I can go more comfortably. Yesterday was not very good, but today is worse. I woke up very weak so I laid in bed for an hour before I actually had the energy to get up. When I did I was very pale for about and hour. My heart rate today has not gone below 111 and been as high as 142. My whole body aches and I had a bad headache in the back of my head most of the day that tylenol helped a little.

I have been able to eat next to nothing today so far, just some liquids and a can of chicken rice soup. I can feel my insides starving, but my stomach is off I am just not hungry at all. When I push solid food before my body is ready my heart goes even faster or I vomit which is why I just wait instead of force feeding myself.

I was doing better compared to before and now it is like I am going backwards. I was crying before today because my body was so uncomfortable that I just wanted to crawl out of my skin. I am trapped in this sick body. About the only things on me that doesn't ache today is my butt cheeks. The aching is not pain I don't even know how to describe it other than uncomfortable and wore out feeling.

I am tired of telling everyone how sick I am. I am tired of being sick. I am getting to a point fear or no fear that I would swallow any pill to make this stop. In my darker moments I would even take xanax again (which I still think caused all this) if it would only free me from all this suffering.

I flat out asked my father if he loved me today. He said yes. Then I asked him if he really wanted kids or if I was just a burden. He said he did want kids. Hopefully he means it and it was not just the proper response being given.

I asked him that because I was so sick and pale today and he saw I was having a hard time and he seemed to just ignore me or not offer any reassurance. He says things like "It's the warm weather (a/c has been running all day it was actually cold in here)", "maybe it is the gator aid you drank yesterday", "I don't know what the fuck is wrong with you." I don't know what else to say about that subject.

What is freaking me out is not only is my heart going fast today, but every so often I can feel it skipping. I also seem out of breath some today like I am not getting a full breath.

I have been following the swine flu outbreak (correction the swine from 3 different continents, bird and human hybrid flu [yea that was not manufactured]). It seems to be killing the age group 25-45 unlike normal flu which tends to kill the very young and very old. I have many thoughts on this new flu, but I am too tired to write them out right now. I only hope I don't get that crap. I am so weak as it is that would do me in even faster.

Saturday, April 25, 2009

Just not a good day for me

Actually it is a good day for my mom. She is able to start eating solid foods today and that means she should be able to come home in a day or two. She is very happy that she can eat again. It will have to be very light food for awhile.

My nephew that had the mild heart attack had to go to the doctor last night because he had a very bad headache that the doctor thinks was caused by maybe a spike in his blood pressure so he has to check it a few times a day while he wears his 30 day heart monitor.

It's just not a good day for me because I am scared. I just want my heart to go back to normal and most of the day today it has been running higher than it has been and 120-137 while I am standing. The dizzy spells went away yesterday and they are back today.

My father went to go see my mom at the hospital tonight and I am taking this time while he is gone to just cry. I am not even sad I am just fed up. I don't want to die esp. right now and I don't want a heart problem I just don't. People cope with things better than me and I just feel lost and scared.

It was so weird because last night around 2am my heart rate was 68. I was so shocked and happy. I thought oh my God, maybe I am getting better..maybe it is over. I stood up to take it to see if it would shoot to 120 and it went to 90 which is very decent over all. I felt pretty good about that. That is why it is such a let down today when it is running faster than it had been. I mean I am even smoking only 10 cigarettes now down from 30 to 40 a day. I have really been trying. I force myself to eat solid foods even if it is not as much as I ate before. I even gained a pound. I haven't even thrown up in days.

I just want my heart to be OK you know because I am just tired of this shit. I already had part of my lung taken out, I have had this stupid crippling anxiety problem for 18 years. I tried so hard over that time to take vitamin and eat right. I am human I ate a lot of bad food, but I have shoved more vegetables in myself than anyone I know. I have not even drank alcohol since 2007.

I get so worried that maybe I fucked my heart up with all the drinking I did in the past or the smoking. I get worried because I have not really exercised in many years because being housebound from anxiety you just don't move a lot. Many times I just got out of bed and sat on the couch to use my laptop or watch tv. I had spurts here and there where I exercised by climbing stairs over and over, but in reality I would only do that for two weeks and stop. I am pretty much a couch potato. I didn't mean to be one just sort of happened. And there I sat for years drinking, smoking and just not exercising.

I don't even know what I want people to say or do for me. I tell my father, mother, online friends that my heart is beating fast and they all say I hope you get better or in my fathers case he just says he doesn't know. That is all anyone can really say or do, but I feel so empty and not comforted by it. But like I said what do I really expect anyone to say?

As I have said many many times before I am scared of these tests they could run on me. Even the tilt table test because they keep you pretty much on it till you faint. I have such a fear of fainting that is like a nightmare test to me. So people say it will be OK, but in my head it is not OK.

I would exercise mildly now, but I am too scared too because I have no idea what is wrong with my heart yet and because the last time I exercised on April 1st I sat down after and got lightheaded and broke into a cold sweat for a few seconds, then I threw up and that was only from power walking for 8 mins. Granted I had not really been eating at all for weeks and my heart rate at the time was 124 while sitting.

I am angry because I want it to just fix itself. So I won't have to deal with this anymore. I feel drained and angry so I guess my tears are angry tears.

Friday, April 24, 2009

Beta Blocker and Hateful Comments

My mom walked around a bit today. One of the doctors want to put her on a beta blocker to control her heart rate. He told her that people her age are more likely to have a heart attack after surgery, which scared her. She said her heart rate is 88-107 which for her is what it tends to be anyway.

She asked me about what I thought of beta blockers and I really offered no opinion because I do not want to be responsible for that choice. They only want to keep her on it while she is in the hospital which is 2 more days I think. I guess they asked her yesterday and she has put it off for now.

I don't know what she will decide to do. I know she is on morphine and if her heart rate is 100 when morphine slows the rate that could be why they have concerns. I know that beta blocks can cause fainting, abnormal heart rhythm and heart attacks in some people. She said she is scared if she takes it and if it makes her sick when she is doing better she does not want to be set back in her recovery.

That is why I did not say anything except for her to express her concerns to the doctor and see what he says. That is just not something I felt comfortable giving an opinion on (though I have many) I just want her to make the choice not me.

My cat Timo is laying next to me on the bed sleeping. He is spending a lot of time with me again. The first few days at my parents house he was not happy and ignored me completely. Now that he is use to the other cats and the house he seems much more calm.

I just took some Tylenol because my body aches and I feel blah. I did not end up sleeping that well last night.

I have really cut back a lot on smoking. Having to smoke outside has made that easier for me to cut back. I am hoping soon just to stop esp. since I have no idea what is going on with my heart.

I still have a lot of concerns about seeing the heart doctor. I just don't want to be scared by him or any other doctor. They don't realize when they push for a test I may not even need and it is followed with something like "Well if we don't run the test we won't know if you have a blockage and you could die." it will haunt me and play over and over in my head. I will fear the test and the unknown. I will walk around believing my heart is blocked and I will never let it go. It is bad enough I have some bacteria in my stomach that has now been linked to cancer and maybe heart disease.

On a different note since I can use my laptop again because of the wireless I was spending time on YouTube last night watching videos about Quantum Healing and Orthomolecular Medicine trying to find any comfort I could that I could heal myself or still have some form of control. I just don't "feel" it anymore when I watch alternative medicine videos. Questions pop into my head like "If this works then way can't people regrow teeth or a missing limb." Then I wonder if maybe some have.

Anyway while on YouTube I noticed on videos all the hateful comments being left (I noticed before, just more so now.) Feeling detached from things gives you a new perspective I guess because I wondered why. Why are humans so hateful and the things people bitch about so pointless. Comments like "Why is her hair like that she looks like a horse.", "What a fat know it all.", and "I hope they die." Do people even know what they are saying anymore?

Why do we care what someone looks like or how their hair is? What business is it of ours? I have seen so many people say that some one is ugly and the very person saying it could be burned in a house fire or car crash. (Which I brought up before in a past post I think.)

We judge people by how they act. "He acts gay.", "He sounds gay.", "Real men don't cry.".

We act as if if someone is suffering that it is their fault. If someone says so and so has lung cancer the first question is usually "Did they smoke?" as if some how they deserved the punishment. Yet we sing praise to the 100 year old woman who smokes a pack of Camels a day and drinks a few shots of whiskey.."Bless her heart."

When an 18 year old couple has a baby it is said by people and the media..."Babies having babies." "They are not old enough yet to understand the full consequence of their actions..after all we now know the human brain is not fully mature till age 25."

When an 18 year old person goes off to war they are no longer babies having babies, but "our men and women fighting for our rights." Which is it? Oh and "Hey you can go off to war and protect us, but you can't buy beer because you are not 21 yet."

Thursday, April 23, 2009

Wireless Router

My mom is very groggy today. She talked to me on the phone for about 5 mins. My father went to see her and planned on staying a few hours, but she kept falling asleep so he left early.

She asked them to change her pain meds because whatever she is on is making her dizzy. She takes a low dose old generation antidepressant for Fibromyalgia and has not had that in 2 days because they say she can't have it right now. They had told her to bring her blood pressure meds because she can't just cold turkey off them, but now they are saying she can't have them. So hopefully they will watch her and make sure she is ok.

She said that she does not feel very well, which is to be expected, but I am glad she is sleeping a lot. I know after my lung surgery I slept a lot too. It burns time away and helps the body heal.

My heart for the first time in awhile went to 137 today and then 20 mins later dropped to 76 and now is back at 95. I could tell that it was very fast again because I felt my jaw clenching which is odd that that happens and my legs get shaky. I have been having dizzy spells since last night and when I walk it is like the room or floor is moving weird.

My father got the wireless router and I hooked that up, so I am now able to use my laptop in my bedroom.

Wednesday, April 22, 2009

Letter to my doctor

My parents went to go see that doctor about me on April 20th. With them they brought a print out with them that I wrote for him. I see that doctor next Monday at 5:15pm after his office closes. He wants to talk to me and said he would spend an hour with me. Besides that print out he already has I am bring with me a few other print outs from medical journals about protracted benzo withdrawal. I also made an audio CD of doctors in England discussing the protracted withdrawal and how it effects 10-15% of people on benzo's when they come off after being on for an extended period of time.

I am still deep down inside pretty sure that 80% of what is wrong with me is caused by xanax withdrawal. At this point the whole world could tell me I was wrong and I know damn well I am right and my suffering is caused by this pill. I am happy in away that all this is being documented by all these different ER visits and now I will be seeing a new doctor because I am seriously considering if and when I get better suing a pharmaceutical company as a class action (I have found 1000's of people suffering like me online that have come off these drugs) or suing my old doctor. I will see suing takes a lot of time and energy, I doubt I will do it, but I feel like someone should pay for doing this to me and to other people.

The following is the note that went to the doctor I see next Monday.

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On Jan. 21st 2009 I reduced my dose of xanax because I was experiencing a thumping in my throat that lasted a month and was starting to have anxiety between doses. I had been on .5mg-.75mg every day for over a year. Soon as I reduced the dose I started throwing up and could no longer eat solid food.

I tapered off .75mg of xanax from Jan 21st - Feb 14th.

The following were my symptoms:

Tingling arms and legs on and off.
Increased Anxiety.
No hunger.
Vomiting
Vivid dreams.
Insomnia (more than normal for me)
Moments that last a few second to a few mins where I felt like I was going to completely crack and lose my mind.
Waves of crying that would come and go.
Feeling half dead.
Shaky.
Hot and cold flashes on and off.
Feeling feverish.

March 4th in the morning I took 10mg of Paxil because I had been feeling so awful and was told I could start and SSRI. Several hours later I fainted. (That day I had been able to eat more food than I had been able too up till that point). By 4am the following morning my heart rate was 140 beats a min. I went to Albany Meds ER. I was told it was a panic attack and to follow up with my doctor. Later that same day I saw my doctor and he told me I hyperventilated (which I didn't) and that is why I passed out. He refused to listen to how sick I had been since tapering of xanax.

From March 4th-March 30th My heart rate stayed high and I was vomiting and feeling like I had the flu. I was waking up covered in sweat and having several panic attacks a day. My blood pressure would be 150/104 if I even just got up to get some water or juice.

March 30th I went to St. Peters ER because my heart rate was 158 and I had not been able to eat much since Jan 21st. I was living mostly on milk, V8 and juice. At St. Peters they ran a bunch of blood work, checked my urine and did a chest x-ray.

Chest X-ray and Urine was normal. EKG was normal but showing sinus tachycardia

Blood work was:
TSH (Reflex) - Normal
Amylase - Normal
Lipase - Normal
Comprehensive Panel - Normal
H. Pylori AB IGG Quant- Positive for antibodies.
PTT test - Normal
Prothrombin time- Normal
CBC5D test - Normal

March 29th (Before first St. Peters ER visit) I was desperate and took 0.5mg of xanax to see if it would stop. My heart rate stayed high, but I was able to eat a little. Soon as that pill wore off all the symptoms returned. However for a few days after taking that pill I was jolted out of my sleep with anxiety/adrenaline rushes. That lasted about 5 days and then stopped.

St. Peters had me schedule a 24 hour holter monitor and an echocardiogram.

April 1st. Was back in St. Peters ER because I got close to fainting once and woke up later in a cold sweat with my heart back up to 140. They did an EKG and told me to follow up with a primary care and to do the heart tests.

April 9th I did the heart echo and the 24 hour monitor. I have an appointment with the cardiologist May 1st.

-----------------------------------------

When I stopped drinking milk after my last ER visit my heart rate stopped going to 120+ and has stayed between 96-118. (My normal heart rate before I took the paxil (or been off xanax) that day was 73-96 depending) My blood pressure now seems to be more normal I get readings of 113/76 sometimes as low as 90/60 which is a bit low for me. The highest I have seen recently is 130/88, but mostly it is normal now.

After I took that single dose of paxil, for almost 2 weeks I had loud Tinnitus in both ears. Which has now gone away.

However I am still unable to eat very much food. I am still vomiting and having constant rapid heart rate. I feel like I have a bad flu and very wore out. My anxiety before I ever took xanax was high, but since coming off xanax my anxiety is at least 10 times stronger than it was before.

---------------------------------------------

Please Note** In Nov. 2007 after being on xanax .25mg for a month I came off. I could not eat, I felt very sick all the time and my bowels became pale. I saw the nurse practitioner because I was so sick and she had me do a liver enzyme panel which came back normal and she sent me to have an ultrasound of my gallbladder, pancreas and liver which came back normal. She said since I was nervous to go back on xanax and to up the dose since I was having such a hard time with being sick. I did and all illness went away within 24 hours. Bowel color returned to normal and I no longer was sick. I did not at the time really put that together and stayed on xanax till I started to come off Jan 21st of this year.

Also Note** Jan 2006 I was living in FL and put on 5mg of valium everyday for a week and hydrocodone for tooth pain and anxiety about dental visits. Early February a few weeks after taking those pills I crashed into a major depression, I could not eat, I was vomiting and ended up in the ER. Liver test was run and that was normal and they checked for pancreatitis which was also normal as was my CBC. In the ER my pulse was 140 and they said that was nerves. I was so sick and depressed I ended up moving back to NY in April 2006 and was sick till the middle of May 2006.
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I have a history of anxiety and panic attacks with agoraphobia. However my heart rate has never naturally been this high. This is like my old disorder times 10 mixed with being unable to eat, vomiting, rapid pulse and anxiety off the charts and some depression because I am so ill. I have a blood/needle and fainting phobia normally, that also seems to be on hyperdrive right now.

The vomiting is not being caused by nausea it is caused by a complete lack of wanting any food and when I do eat my heart pounds and races and it just comes back up. I started for awhile taking pepcid to see if that would help any and I still threw up just as much on that as I did without it.

I am a smoker and cigarettes now make me sick so I tried not to smoke and I got sicker, plus the stress from all of this has made it incredibly hard to stop. The cigarettes now sometimes trigger vomiting.

When this all started I was 155 lbs I am now 143 lbs.
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Current Symptoms:
Vomiting
Lack of appetite
Tachycardia
Dizzy/Lightheaded
Increased Anxiety
Crying (mostly over how sick I feel and fear of what is wrong with me)
-----------------------------------------------

I am not interested on going back on a Benzodiazepine since I seem to have a bad reaction coming off these. And I am too scared right now to take an SSRI drug since the last one I took I fainted and since that day had a rapid pulse. I would just like to know why this is happening to me and when will it end?

I do not drink alcohol I gave that up in Nov. 2007

My moms out of surgery

My father called to tell me that my mom is out of surgery and the surgeon thinks he got it all. He is sending it all off to a lab to be tested so hopefully it will all be clear and she will just have to get better now from the surgery.

She will be in the recovery room for a few hours and then will be moved to a normal room.

I started taking my temperature in the past week. I am normally one of those people who never has 98.6 I tend to be 97.9. Recently when I take it half the time it is now 99.0 and 99.2 I have no idea why I have a low fever. So on and off I have been taking tylenol. It seems that my temp. is up when my heart is beating faster than normal. (It is always beating fast now, but I have stopped considering 96 fast since it has been in the 90's for awhile now.)

Maybe I have some infection some place. I know all of this can't be in my mind. I have never heard of anxiety or depression causing a fever. I have also never had my heart rate this fast 24 hours a day for a month and a half now.

I am glad my mom is so far doing OK. I hope she is comfortable and recovers fast. I also really hope the doctor is right and that he got it all.

My father is going over to my sisters to eat and then he will be going back to the hospital. I will be going back upstairs to my bedroom and just lay in bed and watch TV. Hopefully the tylenol I took will bring my temp. back down to normal.

Moms Surgery Update

My father just called me to tell me that the hospital had a few emergencies so my moms surgery and other peoples surgeries got bumped. Her surgery was suppose to be at 1:10pm, but they just took her in for it now 2:30pm.

She had not been able to eat any food since yesterday so they gave her an IV while she waited.

My father said he would call me once she was done. I told him if he remembers to ask the doctor what stage the cancer is since they will be doing staging as well today. I also told him if it is anything over a stage 1 to ask if she will need chemo. I don't know if the doctor will know that right away, but I figured he could ask.

Hopefully it is just stage 1 and the surgery is all she will need.

My mom just left for her surgery

My moms surgery is at 1:10pm, but she has to be there by 11:40am, so her and my father just left to go to the hospital.

I woke up at 10am this morning and called my x-bf to wish him a happy birthday. He will be 35 today. I got his voice mail and left a message saying happy birthday and let him know what time my moms surgery is.

Five minutes before my mom left, her and I cried together and hugged each other goodbye and she said when she gets a phone in her room she will call me tonight or tomorrow. She gave me my sisters cell phone number in case my father doesn't turn his on and I need to get a hold of him since my heart is still skipping all over the place.

So much has happened and now when new things get added it sounds like I am just making crap up, but my 28 year old nephew had a heart attack the other day. He has had Rheumatoid Arthritis for sometime now. He was in remission and not on any medication. He was going to see his doctor about some shoulder pain he has been having. While he was there me mentioned that his heart had been skipping a few beats, which he normally doesn't have. So his doctor just did an EKG and it was abnormal and they did blood work that showed he has had a mild heart attack. Now he is wearing a 24 hour monitor just like I had too and he just had an echo yesterday. He is seeing the same cardiologist I will be seeing.

I watched through the window as my father pulled out of the driveway with my mom to go to the hospital. I looked at her face as the car rolled away because I don't know if that is the last time I will see my mother. I am so worried about her. Then I just started crying and I still am crying as I write this blog.

So much bad has happened that I start to wonder sometimes..is this a dream? Am I actually in a coma dreaming all this up? It all seems like too much all at once, almost like not this much bad happens to one family all at once.

Before I went to sleep last night I laid in bed and closed my eyes and pictured Oct. 2008. I imagined I was in my bedroom at the apartment and that Keith was sleeping next to me. I vividly pictured the bedroom and how it looked and imagined the a/c unit in the window running. I tried to convince myself I was there. Then I opened my eyes a few minutes later and I was still in my bedroom at my parents house. I don't know I guess in a weird way I thought maybe it was all a bad dream and if I could just wake up I would be so relieved.

Monday, April 20, 2009

Monday

My parents will be going tonight to see that doctor with all my print outs of everything that has/is happening to me. Along with all the tests that have been run and the results.

My mother has her surgery this Wed. and tomorrow has to take a drink that will make her go to the bathroom all day. She will be home in a few hours. Today is her last day of work, then she will be off for three weeks.

I don't have that much to say other than the fact I am pretty much the same. Somethings are better while other things are worse. I feel like life has become a dream. I wake up every morning back in this dream/nightmare. I feel disconnected from the world some how no longer a part of it, just observing it.

I feel shell shocked by everything. I never know when my heart is going to race or skip next or when I will throw up from eating. I am still very scared I will faint again. I am in limbo as to what tests will be run on me next, what pills I will have to take, and my reactions to all of it.

I had a dream last night that I was crippled and in a wheel chair from some stroke I had. I was sitting in a therapist office and the therapist was trying to convince me that the stroke was all in my mind and just anxiety even though medical doctors had proof I had a stroke.

In the dream my mom came in the room and asked if I could take her to the hospital because she was not feeling well from her cancer. I told the therapist my mom was sick and I had to leave and the therapist told me that I really didn't want to get better then and that maybe I just thought my mother was sick. That is all I remember and I woke up.

I finished the book "God Don't Like Ugly" and started the second book "God Still Don't Like Ugly". I am reading a second book as well "Yeah I Said It" by Wanda Sykes. That book is just OK, but I am reading it anyway. I am sure it is funny, but since I have been feeling so down it is hard for me to laugh or relate. I am sure most people would enjoy reading it.

I really miss Keith. I cried over him for about a half hour yesterday. I know he couldn't fix my problems or take them away, but some how having him in my life to talk to and as my partner would make me feel safer. Our relationship was enough for me, but it wasn't for him and I understand that. I just miss him so much.

My mother tells me there will be other people, but some how this seems different. Plus I doubt there will be others. I mean the way I am, who will give up the outside world and a busy life to sit at home with me. I am not that special. I am not even easy to live with. I get upset and scared so easy I must drain everyone around me even if that is not my intention.

I have no one to talk to about my mother. Since she is the only person I do talk to my fears over her cancer are not able to be addressed.

I guess when it comes to my mom I have several fears. There is a chance that this Wed. my mom could die during surgery. In less than 48 hours my mother could be gone. My other fear is that she will need chemo, a word she will not even say because she is busy being positive. I understand that, but I am concerned that this surgery will not be enough. I hope it is. And last my fear is that my mother is older and even if she does get better how much longer will I have her.

Saturday, April 18, 2009

Being forced to apply for SSI

The ER I had gone too has a program called Mercy Care. In order to get that you first have to be denied by medicaid. So I had to apply for medicaid. Medicaid because I have not worked in so long is making me apply for SSI disability before they will even process my medicaid form.

I have been though this process before and it takes a year to be denied SSI/SSD. I end up having to see one of their doctors and a ton of paper work needs to be filled out. I really do not feel like I have the energy to go through that again, but I have no choice.

Last night my urine was brown, which scares the hell out of me. This morning so far it is normal again. I have been drinking a ton of fluids so I am not sure why that happened.

I see my life now as a long list of pills I will have to take. I know eventually they will give me a SSRI. I know I can not cope without medication and I never could, which is why I drank so much in the past. However I am not sure how I can cope on medication knowing what I know about the drugs.

How do I take a pill everyday that I know can give me a seizure or cause sudden cardiac death and a list of other problems that these drugs are now being linked too. Without drugs how do I stay locked up in my house, crying and unable to see a dentist or take proper care of myself. I feel like I am stuck between a rock and a hard place. There is no right answer.

I have done vitamins and deep breathing. I have run the gamut of alternative treatments. They have helped, but they never stopped the problem. It just took the edge off some. I still never really left my house and I still would throw up before seeing the dentist and laid in that chair in pure fear.

Back when I use to drink I never danced. I always felt too self conscience for that. Many people feel that way and I am completely OK with never dancing in public. I am just using this as an example. Alcohol would allow me to go to the store to buy food and would allow me to go out an socialize with other people. In fact many friends I have from the past are completely bewildered by my current state. They knew the drunk me. I seemed normal, in fact to them I never even seemed drunk. It took that much alcohol for me to be not nervous, that much to act like they did normally.

So back to my dancing example. Even when I drank 17 to 20 alcoholic beverages I still couldn't dance in public. I tried and did a few times, but even through all that alcohol the anxiety was coming through. I joked with a few people in the past that I knew when I was living in FL the first time, that even on the edge of a coma my anxiety comes through.

I have no idea how I became this way. I know as a child I had a lot of anxiety. I am sure it is a mix of how I was raised, genetics and maybe even intelligences that all work together to cause my suffering.

The problem is I am not simple minded (not that anything is wrong with that.) I can not be lied to or reassured by the medical community or even by religion. I question everything and I read so much. I not only know the history of almost all religions, but I know the hows and the whys of their development. When it comes to medications, especially drugs that treat mental illness. I know their history as well. I know where the drugs came from (some of which go back to experiments done in NAZI Germany and even experiments our own government did in a program called MKULTRA.)

I know the ins and outs of these pills. So far I know about them more than any doctor or therapist I ever met. I know the history of the terrible experiments done on mentally ill people. Some of which include rubbing Turpentine on the stomachs of mentally ill patients just to see what it would do. I also know about the LSD experiments done at Harvard and on the soldiers.

I know the history of Electroconvulsive therapy (ECT), its effects and how it is still wildly used today. Just as many people receive ECT in one year as people who have their tonsils removed.

MAOI inhibitors were in the past used to treat tuberculosis (and if memory serves me right MAOIs were isolated from NAZI rocket fuel [don't quote me on that I think it was the MAOIs] Either way the reports in the newspapers back then said that the tuberculosis patients were so happy to be cured of TB that they were literally dancing in the halls with joy. It was later found they were not happy because of the TB being cured, but that MAOI's had antidepressant properties and it started being used in mentally ill people.

Me without drugs is a living nightmare. I can't do anything really and I am so isolated. I have thrown up from stress in my life more times I can count and live in a constant state of low anxiety which at any given moment can flare to levels that I hope many people never will experience.

Even while drinking and even when I seem "normal" talking to someone on the street or to a friend I have a constant thought process going. I will being talking and laughing and my mind is monitoring everything. I can feel my heart beat or skipping palpitations at times. I have thoughts about fainting and worry that maybe I didn't drink enough juice or how I have to get away from this person soon because I am getting hot (if it is a warm day outside.) and how I don't want to faint from the heat. I think gross images in my head that is the stuff nightmares are made of. I worry if the current cigarette I am smoking is the 4th cigarette because I don't like the number four. So if it is the 4th I will finish that one and go right to the 5th so I didn't stop on the 4th. I have a list of worries that will be pouring through my head and very real psychical responses going on in my body. Mean while the person I am talking to has so idea of all the crap going through my head. I am pretty good at acting "normal".

I guess my point is if I know how bad off I am and how much I suffer and my relief is in a bottle, yet I know the history and horrible things hidden from the public about these drugs, what do I do when they say "Here take this pill?" (I would literally be playing with my life). I am damned if I do and I am damned if I don't. I don't like when I can't find the right answer or worse when there is no right answer.

Thursday, April 16, 2009

Finally

The doctor called my father back and is going to meet with my parents after office hours next Monday to discuss my current health issues. This is good, so when I actually go to see him he will have background on me. If he is just all huffy and not helpful when my parents meet him then I will keep searching for a doctor. (However this doctor just got an award for helping people, both here and in 3rd world countries. He became a doctor later in life just to help people and works with people who can't afford health insurance.)

I have no energy to doctor hop right now, which is why I am having my parents meet him first. He has a three page print out from me of everything that has been happening since January 2009. This weekend I plan on writing another page since the last three pages did not have me vomiting up brown stuff.

I will not be able to see him next week anyway because next week is my moms surgery and there is no one around to take me (at least that I would feel comfortable with). She is suppose to be in the hospital for three days as long as everything goes OK. We will also know her stage of cancer after the surgery and will finally know if she will need chemo or not. I really hope for her and my family that she doesn't and this cancer is just stage one. I also really hope she gets though the surgery OK because she is older and will be 67 this year in July.

When it comes to me today I have had two cans of soup and caffeine free soda. That is about all I could eat so far. I can't help but think of Dr. Lorraine Day (she use to be an oncologist and now is a promoter of alternative health) she said "All disease starts in the digestive track." That rings true to me if my stomach is what is causing all my health issues. Even after I had the soup my heart pounded and raced. When it pounds I feel anxiety, but not because I am scared of it, just it in itself causes an antsy feeling in my body. Plus I rather my problem be my stomach than my heart. So lets hope it is the stomach.

On youtube over a year ago I stated that my anxiety went away once for awhile years ago only to return. I have told therapists that and they never believed me. The interesting thing I was thinking about today was that it went away while I was on a drug called Asulfidine which is used to treat ulcerative colitis, which I was diagnosed with in late 1993. I was on that drug for a year and my ulcerative colitis has been in remission since 1994. I wonder if what made the anxiety go away was the healing of my digestive track.

Irritable Bowel Syndrome (which I am also lucky enough to have) the doctors use to say is caused by anxiety and stress. However now some doctors think Irritable Bowel Syndrome causes anxiety.

Grateful and Resentful

The funny thing about this blog is I know people read it, but recently I have just been writing in it to keep my sanity and to get out everything that is going on. When I feel well enough, I go down to my parents basement and write in here.

I am grateful for my parents helping me out and letting me stay here. Tonight Timo my cat will be coming over to stay here. I hope he and the other cats get along or at least after a few days hopefully they will. Timo has no front claws so that helps some.

What I am resentful for is I feel like my parents (like always) do not get the gravity of the situation with me. I have lost 17 lbs, I throw up, can hardly eat, have diarrhea, fast heart rate and more than normal skipping heart beats.

The doctor that my father emailed that use to know my grandfather had not responded yet. My father said "He is probably on vacation for Holy Week." I know damn well no doctor is on vacation right now for Holy Week. My father has always been like this. He just sits and waits and an answer never comes. Yet I am sitting here sick as hell trying to see someone and right now I am not able to take myself and have to rely on them.

I called my mother at work and she said "I told him to call the office, but he didn't" I said "Please make him call so I can get in. I know the doctor is not on vacation." She said "It's just how your father is." I said "Mom do you understand how sick I am?" Anyway it ended with her calling him and telling him to call the doctor. He did and big surprise the doctor is in and going to call him back.

Last night I was feeling weak and my father was on the floor sorting newspapers that he was going to be throwing out. I said to him "Dad I am so tired of feeling this sick." Expecting maybe for him to say "well we will figure it out." Something of that nature. He said nothing at all there was no response.

Last night went I went to bed about midnight I laid in bed and my heart started skipping beats. I had to cough to make them stop. Then I fell asleep. At 5am I woke up from pain from cramps and went to the bathroom and had diarrhea. I went back to bed and had more cramps, but fell back to sleep anyway. I woke up at 9:45am and by 10am I was throwing up in the toilet. I had ate nothing yet and it was yellow acid, white mucus mixed in with more brown stuff. Not a lot, but more than it has been.

I called my father to see at that point if the doctor had called or emailed him back yet. He said "no". I told him that I threw up brown stuff again and he said "well maybe it was something you ate." I told him "I didn't eat anything since 9:30pm last night" He said "oh I don't know what it is." that is when I said "it is most likely blood." and he said "oh." so I told him I was going to let him go and that is when I called my mom and she then had him call the doctor they knew instead of waiting on some email.

This doctor is older and I very much doubt he ever checks his email or at least not often.

I don't even know who this doctor is or what his name is or I would have just called myself.

This has been a theme in my life. I get sick, no one listens, I am told it is all in my head or just let it be and then I end up in the ER with major problems. Years ago when I first had panic attacks I was told I didn't that I just thought I did. When I was breathless I was told by my parents and doctors it was anxiety. In April of 2000 I told my mom on the phone that I thought I needed a chest x-ray because I felt like something was in my lung, I could feel a popping sometimes in my back and I was more breathless. She said "There is nothing in your lung, we are not going to spend all that money for an x-ray." June 2000 I was in bad pain in the ER and that is when they found I had congenital lobar emphysema. That August I had part of my right lung removed.

The thing is I had anxiety over my lung. I get very upset and nervous when I am sick. I have a lot of phobias that upset me very much and I will cry like a baby over them. However just because I am nervous and/or crying does not mean nothing is wrong. The lung thing showed up on the x-ray that was not in my head. The H. Pylori test came back positive recently and that is not in my head. The brown stuff coming up is also not in my head.

I know from experience many things are in my head. 18 years of dealing with anxiety issues I am fully aware I am a bit touched in the brain, but I also know my own body. I know when something is wrong. When you have anxiety they never bother checking, after all you are just some neurotic.

I never liked people seeing me cry, now I cry as often as Tammy Faye Baker did. I am so sick now I just cry whenever I feel like it. I cry in the ER, in the waiting rooms, walking to my fathers car a few times. I just don't care anymore who see's it. I refuse to act through this event. I have no energy to wear a mask for anyone. I cry, if people don't like it, don't look.

Wednesday, April 15, 2009

Back at home with parents

Two days ago I went back home to stay with my parents. I couldn't take being alone anymore because I was so sick. I have the apartment for a year, but over all I think I am going to lose it because I don't think I can live by myself and I don't know anyone who I could live with that I would feel comfortable with. Timo my cat will be coming over here tomorrow.

I am still throwing up, but have been able to eat more solid food recently at night. Now when I do eat I get cramps which makes me feel weak and wore out.

My parents emailed a doctor that use to know my grandfather who was a doctor as well before he died. They emailed him to see if he could help me with everything that is going on with the xanax withdrawal and the stress of everything else. He has not wrote back yet.

When I throw up there is these specs of something that looks like black pepper when all I had was water and no breakfast yet so I assume I am bleeding a little from an ulcer or something.

I started reading a book called "God Don't Like Ugly" it is pretty good so far and helps me to burn time. I know I am in a depression now because it is as if the world was painted gray and my thoughts are very dark. Thoughts like there is no point because even if I do get better I will only get sick again someday and die. I just don't feel joy and the stress of everything hanging over me and the fears and risks that it all brings with it fuels the fire more.

My mom has surgery next Wed. to remove her cancer and that is the same day as my xbf's birthday. Part of me sees that as an omen that something bad will happen to my mom. I think about losing her a lot and cry. I also think about the fact that even if she gets well she is almost 70 years old and I will lose her soon anyway.

I have known for a long time that I can't take care of myself. I never could. What do I do when my parents are gone? How do I cope when I can't even cope well when they are alive?

Today my xbf stopped over to see me for a half hour and we stood outside and talked. It is always good to see him and we remained friends. It is hard for me though because when he is talking I find myself looking at his face and his eyes and thinking to myself "you are the one and the only one I want." I understand that is a fantasy I will most likely have to get over because he is not going to return to me, but it hurts so bad because I very much still love him. Now with everything happening to me it is that much harder to be without him. I just want to fall into his arms and cry my eyes out. I want him to make me feel safe.

My father is not being mean or yelling at me, but he has been distant. I think maybe he has said two sentences to me since I have been home. That is how he always is though and he is not good with feelings. What scares me is if my mom dies he is all I have left. Who will I cry on and who will I go to when I am scared? Who will take care of me?

Friday, April 10, 2009

H. Pylori

I am not ready to try this yet because to be honest I am too scared too. I am too scared to see what it would cause to happen. I am very fearful of making things worse. However I can't help but wonder what would happen if I embrace the pain?

What if I stopped caring what happens to me? What if I embrace the rapid heart rate and enjoy the rocking of my body it causes? If I stop fighting the vomiting and just throw up as often as my body wants and let myself panic without controling it. Really let myself get as sick as my body wants to get and put up no fight.

Of course I doubt I could do it. I would most likely end back up in the ER which I am trying to avoid right now, which is why I don't want to faint. If I faint not only will it scare the crap out of me, but they said I would have to return to the ER.

I have been thinking about the H. Pylori infection I was told I have. I am in no shape what so ever to be downing megadoses on antibiotics right now. Truth is I already know I can not tolerate the pills to get rid of it. Normal doses of antibiotics are hell on my system. I also know I am in no shape for a scope to be done right now. They would only put benzos back in me to knock me out and reset everything I have gone though. I am not interested in the risks involved with a scope either.

I will see the gastro doctor and do another type of test to prove I have an active infection. If I do then I do. I choose not to treat it. In reality it is not going to kill me this year. Even if I have an ulcer I can get rid of it by taking drugs like pepcid and quitting smoking.

H. Pylori was found to cause ulcers in the 80's and has been linked to stomach cancer, colon cancer, and even heart attacks now. But here is the thing. 50%-70% of the world population is infected with H. Pylori. In the United States 20% of people are infected under age 40 and 50% of people are infected over age 50. It has been in humans for 1000's of years. Something doesn't sound right. Even after you treat you can become reinfected. Some say it is rare to be reinfected and others say it is common. They are still studying this bacteria. Some scientists find it has positive aspects like preventing diabetes and oddly people who have H. Pylori are at risk for stomach cancer, but people who don't have it are more likely to actually die from the stomach cancer. Also people who don't have H. Pylori are more likely to get certain throat cancers and H. Pylori is thought to prevent children from getting asthma so what the fuck? Do they even know what the fuck they are talking about anymore?

My mind changes on this issue ever few hours and will continue too, but as of right now my answer is hell no I am not treating this shit till you have a better treatment that is not going to make me sick as hell and could do lasting damage to me. Hell no I am not treating something that ups my risk of other diseases when all your studies say "It is not yet known if treating H. Pylori lowers the stomach cancer risk once it is treated after infection has taken place." What the hell people. If this was 1980 and I had an ulcer they would say it was caused by stress and tell me to take anti-acid drugs till it got better.

They use to do Upper GI tests to see ulcers and now scopes are all the rage and biopsies. I am not stupid if things get worse I will do the test and treat. But for right now they can do an upper GI. No freaking scope, no megadoses of pills chasing a bacteria they are not 100% sure is doing very much at all except causing ulcers in some people who have the infection.

Anyway in an hour I will be crying wondering how I can get through the scope and take all those pills. My mind is all over the place.

Dry Cereal

My father came to pick up the heart monitor to bring it back to the hospital. The last 40 mins of the test I was crying because I felt so ill and like I was going to pass out. So I started eating dry cereal little by little to get some food into my system. I am still eating it slowly right now.

Because I was so upset my mom came over when my father came to pick up the heart monitor. I showed her a lot of the information on the forums about benzo withdrawal so she could see that other people are feeling the way I feel.

What really sucks is not only am I going through xanax withdrawal, but I also have a ton of other issues going on and dealing with my very real anxiety disorder which is now because of everything off the charts.

I am worried about going to sleep tonight because I always wake back up into a nightmare of illness. I feel sick enough now as it is, but the morning is way worse. There is nothing like being jolted out your sleep with a pounding heart and racing thoughts..then vomiting.

I feel very disconnected from life. I know there is a whole world going on right now. People going to parties, planning their weddings, shopping at the mall or planning to see a movie. I can no longer see the point to any of it. I assume it is my state of mind. I just view it all as pointless. After all "we will all get sick and die" repeats in my head. I don't feel joy anymore. It has all been replaced with fear, terror and panic. Happiness has been replaced with physical pain, nausea, rapid heart rate and weakness.

It is interesting that "We all get sick and die" was just as true 9 months ago and it did not bother me at all. Now it has become a broken record in my head, my mantra of terror. That is why I keep assuming this is my brain chemicals all messed up from that drug.

I miss food. I dream about eating it sometimes. The one dream I actually remember I was eating burgers. Then I woke up and all I could have was a soda.

Assuming I don't drop dead soon and I actually recover or mostly recover from this someday I don't think I can ever be the same. I was never one in recent years to be involved in petty bullshit, but more so now I can't imagin really caring about peoples drama. So many people waste time bitching about work, their car, who has what. I can't even get to that level again.

I was profoundly changed when I was 24 years old and had to have lung surgery. I can only say it is happening again, there is no way that this is not profoundly changing me. I just don't know in what direction I am being changed to. Last time I remember feeling at peace and like all was well even if it turned out bad. I lost fear. It was like I could feel the comfort of another world that was here all along. That when we died we didn't go far at all.

This time it is like I am experiencing what it is to be in hell. (hell being real or not.) I have never experienced this level of fear and anxiety. I want to climb out of my skin. I asked my mom a few weeks ago to kill me and I was serious at the time. Thankfully that feeling has left, but the fear of that feeling returning still haunts me. This time I feel like God is far away, that all things good and nice are far removed. I have to look in the mirror to remember I am me. Sometimes I pace around so much for hours on end in a panic or feeling ill that I forget I am not just some entity that only hovers around this apartment, that I am actully a human being and I am still me.

I have watched my body and looks melt away from starvation and stress. Oddly I don't even care what I look like right now. The goal is to get better and survive, the weight can come back later. I wonder things all the time now that to most people I assume sounds crazy. But I think "who am I?", "What have I become?", "What is the reason for this? Is there a reason?" then all the fears and imagines fill my head of the future of horror that is waiting for me.

Now I will say this, but don't hold me too it because as you all can tell I am fucked in my head right now. I no longer want to be gay. This does not mean I am now str8. Just I choose to stop playing the game. I know deep down it does not work. The gay world is full of cheaters, liars, and selfishness that puts even the darker sides of the str8 world to shame. It is based on profound selfishness. So I tried to play the game and find that gem who was just like me, lost and scared. I was looking for that connection. In that search I have found nothing but pain. So how does one win the game? The answer is to never play the game at all.

Cardiology Appointment

I called the Cardiologist office, but because of my moms upcoming surgery there was only really two dates I could get in and they were booked. So I have an appointment for May 1st at 1:40pm.

I asked if something bad shows up on my echo or 24 hour test if they will call me and let me know. He said that they would and would get me in right away. Hopefully nothing is wrong. There is only so much I can take right now.

So May 1st Cardiologist and May 8th Gastroenterologist.

I will be so glad when this heart monitor is off of me because I really feel like I need to take a nap, but I have to be awake for when it turns off so my father can take it back to the hospital for me.

I hope by May 1st my heart is just back to normal so there is nothing else I have to do. I am freaked out by what others tests the Heart and Stomach doctors will want me to do.

I called around to see if I could find a therapist that worked by phone since I can't get out of my apartment and my father is busy with work and my mom right now, so he can't take me. But there is no therapist I can find that does that.

Agoraphobia is one of the most common phobias yet not many people know what it is and it is very misunderstood. I can't help but wonder how many other agoraphobics right now are sitting at home unable to see a therapist to talk about things.

24 hour heart monitor

The 24 hour heart monitor has this diary that it comes with where you put down what you are doing so they know why your heart rate changes. Mine looks completely like I am a nut job.

11:00 pm went to bed
4:20 am woke up heart raced
6:00 am slept on and off from 4:20am till 6:00am
6:36 am first cigarettes of the day
6:52 am Vomitied from sour stomach and anxiety
7:18 am Crying and pacing till 8:30am

This thing stays on me till about 3pm. Right now I feel so weak and wore out. I have only been able to hold down soda. I have had a few mild hot flashes and pin prick feelings in my brain and some dizzyiness.

I cried on the phone to my mom again this morning and decided to come clean about some secrets I have kept from her. I told her I am the one who burned the garage down when I was litte, which she said she already knew. I told her I was molested once that I know of by my cousin who is only a few years older than me. She told me she thinks he was molested by the guy down the street who was later arrested. I told her I was not tramatized by it and she took that well.

Then I told her about the adult videos I did years ago and how in Atlanta I was a escort for a little while. She was not fazed and said everyone makes mistakes and I am no worse than anyone else. So now my mom knows all my secrets.

I am so tired of feeling sick. Mornings are way worse for me for some reason. It is when I am the most sick to my stomach and I feel the most scared. I also feel the weakest because I hardly eat and when I sleep I go all those hour with no food.

I still wonder how I will ever feel better again after all this because even if I do get better it is only a matter of time before I become sick again. We all will get sick and that scares tha crap out of me. I use to be able to ignore that, but now I just can't shake the thought.

My nephew is still in the hospital with his collapsed lung. It has not inflated yet and he might have to have surgery.

When I feel a little better I have to call the cardiologist today because I have to make an appointment.

Thursday, April 9, 2009

Heart Tests

So I went and had the echo of my heart. The tech asked why I was having it done and I told her about my fast heart rate. Soon after she started the echo she kept going back to one spot and said "Sometimes the heart can beat fast when there is heart valve damage."

Now does that mean I have heart valve damage? Who knows, I wish she didn't say it though because that is what I am thinking about now. After I asked if I could just call for the results and she was frigidity and said "Well I think the cardiologist will want to see you, so be sure to call him today and make an appointment. Again this makes me think something is wrong. I didn't call today because by the time I got home it was 3:30pm and figured they would be closing at 4pm. So I will call in the morning and make an appointment that I can actually get too since I have to have my father take me and my mom only has certain days off and has her pre-op and surgery coming up. Hopefully I can get in and hopefully nothing is wrong with my heart.

Then after the echo I had them place the 24 hour monitor on me which I am wearing right now. I had one of these when I was 16 years old and I have to say the monitor use to be the size of a giant Walkman, now it is the size of a pager from 1995. It is so much lighter. I checked to see what my heart rate was a little while ago and it was 104, which isn't that bad compared to what it usually is.

When I first got there I was having such bad anxiety I had to go pee three times, threw cold water on my face once and kept pacing around like some mental patient. I started to cry once, but managed to hold it in.

After, my mom came over for an hour and a half and we talked and watched some TV. She told me that she is scared they will want her organs so she is not donating them for the surgery, but if something really happens my father has a form from her to let them take them. I told her that this is a lifetime movie in the making. My heart is failing and I will end up with her heart. She said "Oh God...now I don't want to have surgery." and laughed some.

Tomorrow at 3pm this monitor will be over and my father will come and pick it up and bring it back to the hospital for me.

I am going to try to find something solid to eat. I have no idea what I want, but I do feel like I can eat right now so I better do it while I can. I think I will have soup.

I feel I can't cope with anything

I have come to a horrible realization. I don't know how to cope with anything. I am like a giant scared 8 year old. Being so sick and weak really throws this in my face. I hate the fact that we will all get sick and die. I know that is a part of life, but right now that paralyzes me.

In my 20's except for the lung surgery I was able to ignore my health. I am not even sure how I coped with the lung surgery back then. I assume because I was drugged up on pain meds and so I couldn't feel the anxiety. Though I do remember crying about it.

Now with my mom being sick this changes everything. What if she dies? I will be alone because I only feel safe with my mom. That is so awful I will be 33 years old later this month and I need my mom. I just don't feel safe without her at all. My father is there, but really no help emotionally. I assume if my mom dies I will take whatever pill they give me because who cares what happens to me then..I will stop caring.

I keep having anxiety attacks about having to leave in a little while to go to have my tests run. It is not even about the tests as it is I feel so weak, squeamish and nervous I don't even want to leave my apartment. I am scared of the kinds of panic attacks I will have there and worried I will faint.

I was able to have a can of soup about two hours ago and I got up the nerve to take a shower. I have been so scared of fainting in the shower that this is the first shower I have had in weeks. I have been cleaning myself with washcloths out of my sink.

The cat missed his litter box a few days ago and it is still on the floor next to the box. I have so little energy I just don't feel motivated to do anything.

Thankfully after the 24 hour test is over I don't have to return to the hospital I asked. I can just take the machine off and have my father bring it back for me. I was worried about that because I didn't know if I could go out two days in a row.

This morning

I woke up this morning and have already thrown up two times. I have not been able to eat any solid food yet. My heart rate is around 124 a minute. I am so sick of my heart rate being so high. It is really scary. No one will completely listen to the fact that my heart rate did not go this high till after I took a paxil on March 4th.

My parents are taking me today to have the heart echo and 24 hour monitor put on. I don't even feel like I have the energy to do this. My normal anxiety plus all this happening is very overwhelming and I pace back and forth in my apartment. I am thinking about staying at my parents house. I don't like being alone. Yet I am really stuck because soon my mom has her surgery to remove her cancer. Some doctors have said "Well maybe you are stressed out about your mom." Which I am, but all this started before she knew she had cancer. My heart, vomiting and that day I fainted all happened before.

Sometimes I am so desperate I am willing to take whatever they hand me to make this all stop. But then I read something like this:

"I was put on Zoloft to treat Hypotension. Three weeks into this I began having seizures. One of my Doctors added a Beta-Blocker into my fourth week of zoloft, because my chest pains had not diminished. Then I was sent to a neurologist. After countless tests and NO answers, he put me on Depekote. Within ten days my seizures changed. I no longer came out of them right away. The worst one - eight hours I could not move anything below my neck, but because I was able to cough when the Doctor asked me to, he believed this was all in my head and sent me to the psych unit of the hospital. This has terrified me. I can't think of any reason why anyone would fake this??????
The second time this happened I went to a different hospital. After I came out of it and talked with the Doctor, he also believed Zoloft started this. (After 4 different ones said NO WAY) I went off all meds, but the seizures have remained with me. (at least 2 a week)

Three weeks ago I started back up on my beta-blocker, because my chest pains had returned (stronger). Six days into that and my seizures came on strong!!!! In three days I had a total of 17. I was admitted into the hospital for seven days. I was hooked up to the EMU for five days. I had no seizures during that time and was sent home. I have been off the beta-blocker for two weeks and have not had any seizures for almost a week and a half. What is the deal? Am I not going to be able to take anything now? I really need help. I'm not sure what to do? Or who I should see??"

and

"I had my first and only 2 seizures on May 14, very scary, and they have since been controlled with Dilantin. Since I never had seizures before and the only medication I was on was Lexapro I am wondering if there is a connection. Anyone else hear anything about this type of reaction with an anti-depressant?"

Then I think maybe I should just go back on a benzo like xanax or valium. But then I know that I started getting this sick when I came off that drug.

My anxiety is so high and I have so many body problems right now. This morning I was walking to the bathroom because I felt like I was going to vomit and with out any warning some came right out of my mouth and into the bathroom sink.

I have a hard time knowing how and what is the "real me". I was on xanax for over a year. Before that I was drinking a lot for 7 years. I can't remember how I was before pills and alcohol. I do know that my heart rate was never this high when I was nervous. I did throw up when I was nervous, but not this much and never was forced into starvation.

I also know that back in 2007 after being on xanax for a few months when I came off I was sick. I couldn't eat and felt like a dead person. That is when I ended up having the blood work to check my liver and the ultrasound of my liver and gallbladder. After a few weeks of feeling awful I started xanax again and like magic it went away.

I also know before I came off xanax I developed a thumping in my throat. That lasted over a month. Once off xanax that thumping has stopped and never returned.

Right now is so hard becasue I am going through all this and people are not hearing me. If my mom asks "well if you are this sick off the meds and the meds can make you sick, what do you want to do?" The answer is I don't know. I don't know what to do.

I feel bad putting stress on my mom right now because she has cancer, but at the same time I feel like I am dying. I can't find anyone with an anxiety disorder who has a constant high heart rate like me for over a month. I keep running into doctors who don't know about medications and that is scary. I should not know more than them in some areas. It leaves me more scared.

I don't know if I can make it till May 8th to see some nurse at the Gastro doctor. I don't know how I am going to be this weak and get through a scope and all those antibiotics to get rid of the H. Pylori.

I assume my heart tests will all come back normal and then they will want to place me on a beta blocker. Then what? Why is my heart going this fast to begin with?

I wish I never took any meds now I am in a nightmare and I fear I will be lost in the nightmare forever till I die or till I am placed back on drugs with them never realizing it was the drugs. I messed up guys by listening to the doctors and now I might pay for it with my life. Be so careful what you take. I am now in such a circle and so ill I will most likely have no choice but to do whatever it is they tell me to do. I don't know if I will end up with a worse disorder like seizures or not.

SSRI's have been linked to sudden cardiac death now. They also can increase your risk of GI bleeding 4 fold. That is why I can't even take an SSRI right now. It can cause rapid heart rate when you start and I already am too high and I think I have an ulcer so I can't risk the GI bleeding effect. The only answer seems to be a benzo. Then what? I go back to normal? If I do no one will believe how sick I was or that it caused it. Will I be stuck on a benzo forever because when I come off my heart can't take it?

I have prayed so much asking God to make it stop and so far the answer is "No"

Wednesday, April 8, 2009

How I Feel

Since late January I have been so ill. (read post below to catch up). I have been reduced to living on mainly liquid foods. I have thrown up more times than I can count. I am very thankful when I am able to have a can of soup, banana, or if I am lucky a microwave breakfast. (I have been unable to eat healthy at all)

The heart issue did not start till a single dose of paxil. Fainting scared the hell out of me and that is a major phobia of mine. Outside of all my illness my anxiety has me on compele lockdown right now because I fainted. Even if I felt well I don't think I would drive my car (which I have not driven since Feb 22nd anyway). I am scared I am going to just faint again while driving or in the supermarket. I don't even feel safe being alone now.

I wish I could completely say that it was paxil that made me faint that day, but I can't and there is where the problem lies. Right before I fainted I had a gross thought then I started to faint. Now I always get gross thoughts and now if my own mind can make me faint I am in trouble. I mean after all I could have a gross thought while driving and pass out.

I am sure to many people fainting is not a big deal, but for me it is giant. I don't like anything about it, it is the closest thing to dying for me. Your whole body winds down and you feel so ill. You can't see and you turn pure white as your pupils dialate out.

I have now fainted 3 times in my life. March 4th my most recent faint, Nov 2007 when I drank way too much alcohol and fainted and hit my head in the bathroom (which gave me a phobia of drinking alcohol because it caused me to faint. I needed to stop drinking anyway) and in June 1994 after my blood was taken (that is where my blood phobia comes from).

Two of those events I can blame something, blood test and alcohol. This time what do I blame? What is the chances that my gross thought came right before I fainted? Did paxil and my gross thought together trigger me to faint? Was it just the paxil (even though I took it years before and never fainted) and it just happen to happen at the same time? This is my problem, nothing to blame but my mind? Then I am in trouble because like I said I think horrible things a lot to begin with. I am unable to stop those thoughts from coming at me for the past 15 years medicated or not. The only thing I can do is try to block them out which is what I usually do. Gross thought comes in and I picture flowers blooming in my head to try to get away from the thought.

However since the day I took paxil my heart rate has stayed very high 100-150 something. My old heart rate was 70-80. Even when I am relaxed my heart races fast so it again makes me question the paxil.

Since Jan. I feel poisoned the only way to even put it into prospective for someone is to say it feels like I have a constant IV drip of chemo going into me. It takes me 20 mins sometimes to get off the couch to get a glass of water. My body aches, my heart races and I am so weak. I have a hard time focusing at all. I was always reading books and now I just can't...I can't even focus on TV shows. I am very zoned out.

The second visit to the ER was because I got close to fainting two more times that day. I am scared of my treadmill now because I walked on it and shortly after I broke into a cold sweat. I assume that is because I had not been eating and my heart rate was already high to start with. Thoughts enter in my head though that I have heart disease and that is why it happened. I worry that my heart is clogged or damaged and that is why it is beating so fast. Plus I read online about people with anxiety disorders having more heart attacks than non anxious people and how people with mental illness in general die on average at 57 years old.

Many times when I sleep I am jolted awake covered in sweat. Not just a little sweat, but sweat running down my face and soaking through my t-shirt. I have been sleeping on the couch so at least when I wake up like that the TV is on and that feels much safer.

Many times I feel so sick I cry my eyes out for hours sitting on my couch or calling my mother on the phone. I start to get these intense anxiety attacks unlike anything I ever experienced in the 15 years I have had anxiety. It is more anxiety than I even knew a human could experience.

Just picking up my apartment a little shoots my blood pressure to 150/101 and my heart climbs to 158. I checked after cleaning a little because I felt this pressure in my head and my knees felt shaky. That is another thing when I walk know my legs go weird on me and shake at times, other times I lose feeling in my wrists or my face. All these feelings and things happening is not good for a nervous person to deal with.

I tried to stop smoking cold turkey and my blood pressure feel so low that I started to black out so I am forced to smoke and trying as hard as I can to reduce the amount each day so my body can take it. Oddly usually when someone quits smoking the heart rate will drop, but mine stays high.

I called a Gastro doctor today because I have stomach issues and H. Pylori bacteria. They are booked till June, but can get me in with the nurse May 8th. So that is when I will be going there. I started taking pepcid last night in case I do have an ulcer because sometimes I have thrown up some small brown specks when I ate nothing brown and sometimes small amounts of blood.

I guess it is good that I have the energy to start writing again. Part of it is because I am scared I will die and I feel this need to connect and tell my story.

I will write more if I can soon. Because there is so much to this story I can't write it all out at once.

Tomorrow I go in for my echo of my heart and wear the 24 hour heart monitor.

Monday, April 6, 2009

My mom has cancer and I am sick

I am going to keep this as short as possible, but there is a lot of information of what has been going on. I will just summarize as best I can.

Jan 21st-Feb 14th I tapered off xanax. My throat issue went away once the drug was stopped. However from the time of the tapper till now I have been unable to eat very much food. I throw up a lot and have dropped 17 lbs. This is from some sort of benzo withdrawal that the doctors refuse to recognize.

March 4th I was so ill and wanted relief I decided to try going on an anti-depressant. So I took 10 mg of paxil and several hours later fainted on the floor. I called my primary doctor and made and appointment for the next day. Later that night my heart rate started to climb and was at 140 beats a min so at 4:30am I had my parents take me to the ER. They did an EKG and told me to see my primary care doctor. I never took paxil after that day.

At 11:30am March 5th I saw my primary care doctor and he refused to listen to my heart and yelled about me being off xanax and said "so what you fainted who cares!" and yelled some more and this went on and on to long for me to type out maybe someday I will. He refuses to treat me so no primary care doctor.

Since March 4th My heart rate has been between 100-150 at rest (very rate will it go to normal), I have vomited, been jolted out of my sleep with anxiety attacks, I have major panic attacks and in a depression.

March 9th my mom had a colon scope done and was told she has colon cancer. She has surgery on April 22nd to remove the cancer and then they will stage the cancer to see if she needs chemo.

March 29th my heart rate was so high I went to a different ER where they did a ton of blood work, gave me an IV, chest xray and did an EKG. The blood work that came back quick was normal and I had a few tests that take longer so they said they would call me.

April 1st. I got close to fainting 2 times and my blood pressure went from high to low. I was so sick and shaky that I emailed Keith (my xbf) to tell him goodbye in case I died. Went back to the ER that night and they just did an EKG and said to follow up with my heart tests.

This Thursday April 9th I go in to have an Echo of my heart and a 24 hour monitor placed on it.

Today the hospital ER called me to tell me one of my tests came back positive for H. pylori the bacteria that causes peptic ulcers and now I have to see a doctor to get treatment for that. Most of the pills they use to treat that I can't even take. H. pylori also can lead to stomach cancer many years down the line if not treated. I might have to have a scope done of my stomach as well. I decided to put this off till after my moms surgery. So I assume I will try to make an appointment with a new primary care doctor around May 1st.

I have no health insurance so I am applying yet again for medicaid which I am always denied for.

In 4 months I have lost my 5 year relationship, Become very ill and my mother has cancer. I cry all the time and have so much anxiety (part of which was caused by that stupid pill)

I went emotionally numb for a few mins today. I couldn't feel anything..I felt dead. This is all really too much to handle. So this is why I have not been writing and there is so much more detail to all of this, but I just wanted to do a short update.

If you happen to be having your own problems with benzo withdrawal please see the following sites for information.


http://www.benzo.org.uk



http://www.benzowithdrawal.com