It’s 4 am and I’m hardly breathing

Just got finished with a couple of episodes of watching season 2 of criminal minds. I have fallen in love with this show though it is kind of creepy. I’m not sure which is freakier…that this fiction is whacked and someone thinks of this stuff or that it might actually be true and there are more serial killers/rapists/or more than I would like to think about.

The last few hours, my gastritis has been acting up. I wish I could say that it is keeping me awake but as tired as I feel, I am just not sleepy.  I have been in a psychotic state the past few days, having weird thoughts, paranoia and delusions.  I try not to give in to the voices but sometimes it is very difficult. It’s 4:30 and all I can think about is death. It is a constant struggle. With my nerve condition, CES (Cauda Equina Syndrome), I have had a bladder accident today that always sends me off the deep end. I know that sometimes sitting causes me to push on the bladder causing urine to come out. Because I have been on narcs and anti-psychotics, I have had some retention and don’t really know when I am full. I find it humiliating to find wet pants and not know it all the damn time. This week is also my 11^th anniversary of getting this blasphemous condition and with every bladder or bowel accident, all I can think of is that another disc is going.  The tension in my neck and shoulders from worry is causing my arms to feel weak at times. I can no longer hold the phone for more than 10 mins with out my arm going numb. And I feel that if I have cervical herniations, I will just kill myself. My only saving grace has been my nieces and nephew. I know they will not be okay even as much I try to think they will be, that they will be resilient enough to deal with my loss.

I have been trying to get a hold of my pdoc but no response. I guess she is too busy for me and it hurts. I have known her for 19 yrs now, since I was 17 and now I feel like I need to see another doc but then she knows me better than anyone. I know that the stressors of last week with the screw up of my benefits set the stage for this psychotic break. I just hope that I can get it controlled before I have to seriously consider going inpatient again.  My fear there is that they will mess up my meds and then get it straight the day I get discharged. And besides, the docs there will most likely want to try a new expensive drug I have never been on to deal with my psychosis. No one understands the pressure of this and knows what kind of hell my head goes through. Yes, my physical pain sucks, but this madness is worse than that. Least I know that a vicoden or dilaudid can calm it down.  Any type of stress and boom, I am crazy. Typical “normal” people become anxious or nervous, maybe even have anxiety attacks. Me I just become psychotic. The voices get louder, I talk to myself more to give in to their endless questions, criticisms, and observance of who is going to kill me or saying negative things about me. Weird thing is that every time I get psychotic, it’s different. This time in addition of them reading my thoughts, the conversations continue and no one knows what I am talking about. The conversation in my head gets externalized and the people around me whom I am carrying on the conversation have no clue what I am talking about. Sometimes it is of an intellectual nature, such as the Maya or some history that I have read and think that they know about but truly they have not read it but I know they have because the voices have. I know it is weird to think this but I know my thoughts are amplified and people can hear it and maybe the voices too. I don’t know maybe it is just part of the madness.

It’s now 5 am so I am going to try and get some sleep for at least 6 hours as I need to get up for good old therapy…

New Year, New Changes

In Oct of 2011, we got word that my workplace was discontinuing my insurance and I would be forced to change to another plan. While it is cheaper by a hundred dollars, my biggest worry was how to get my therapist a provider so that I didn’t have to pay so much per visit. Not that I am paying much now but still, $50 per session versus $15 is a HUGE difference. Then my car broke down and although I was able to see her if I was able to swing it with my work, the last two months of the year, I think I only saw her maybe twice. The majority of the time we talk on the phone and it has been a problem. I finally said enough when signals got crossed and she royally pissed me off. We no longer are on the same page on anything. She has her views, I have mine and I think it is time to move to on to see someone closer. Oh, forgot to mention she consolidated her offices Labor day so she now lives 30 miles away from me.

Friday, I finally made a few phone calls. One was to a referral by a friend. The other was from a name I picked up on the internet through my insurance of providers and a little Google help.  We’ll call her MN. She called me back today and we spoke a little bit but I think I am going to have to cross her off my list as she is not comfortable with high risk patients aka suicidal patients. I was thinking this over as Mary Chapin was playing on my MP3 player. I felt like leaving her a message saying I have thought about what you have said and am no longer interested but you might want to read the works of David Jobes, a suicidologist who has the guts to actually try and help those that need it the most.  Now I know why Man’s Greatest doesn’t have a table for suicide prevention week…they just like to pass these patients on like cattle with mad cow disease.

In another update, I have rekindled with my first love. It has been weird as we still have the same chemistry and think of each other often, almost calling each other soon as we think of one another like old times. Though we have been apart for seven years, it seems like no time has passed at all. Luckily, long distance is a LOT cheaper than it was so it isn’t costing us a fortune to talk to one another like it once did.  I have only seen her twice and that is mostly because of work.

Ending with my currently therapist is and has been difficult. She still thinks that we are still going to be in this but I really don’t see how. She is stubborn and I am just as stubborn but I am the consumer so I have to have the upper hand even if she thinks I don’t have it. I am grateful for all she has done but I think it’s time to end things now. If I don’t find a therapist, then fine. I’ll just go on my own way. Not like I have not done it before. I think if I blog every night or try to, it might help release the midnight demons that put the death hold on me at times.

On a positive note, my essay on “Analysis of a song” might get published, if I can get permission for the copyrights of the lyrics. I am very excited about that.

Blog

​I cannot sleep. Pain is keeping me up and sending me to a bad place like it always does at this late hour. I have taken vicodin but it still hasn't touch the pain. It is very quiet in my room (other than the constant bickering in my head). I need the sound machine on to drown out my thoughts. I really want to do something harmful but not sure what. I'm going mental. I don't know what is real anymore. I feel like I am in a dream yet I know I am not sleeping. Very weird but I don't care. I took 4 mg perphenazine tonight and still the voices are harping. I seriously don't know how much longer I can stave them off.

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midnight demons strike again

It's almost 3 am and I can’t sleep. I am very tired but my thoughts are in a dark place. I decided to work on my little research survey and found that it was harder to put on paper than it was to think it up in my head.

My pain levels are still through the roof, though the meds seem to be helping tonight. Yesterday I didn’t think I was ever going to fall asleep. Thursday I had a phone session with bozo and told her I wanted to die this weekend. Course I have been saying that for months now. Today I really did want to do die because I am so frustrated that I cannot find relief in dealing with my pain and my leg being swollen is not helping my mood any. I just want to cut my foot off at the ankle. I’m so tired of being in pain every day and no one knows what to do about it. My pcp has decided to put me in a boot for 2 wks. It that doesn’t work, I am not sure what to do. I might have to be on bed rest completely and that thought is not helping me as I will go fucking nuts just sitting around the house doing nothing when there is so much work to do for my research job.  I feel like I am on this merry-go-round that just bring me going from doc to doc and not getting any real answers.  I just don’t want to live anymore. I have no desire to live to see tomorrow. I only do because my body has decided to continue to do the body functions that allow me to live. I have thought of so many ways to end my life and I soooo want to go through at least one of them and I will, but it always is one day. I really don’t know if I am capable of ending my life anymore, I just seem to think that thinking about it is somewhat better than acting on it all the time. I know that might sound crazy but it’s true. I have thought about so many ways of ending my life the past few months and even prepared to do so yet I never seem to really act on going through with it. How pathetic is that?? I feel more like a loser because I say I am suicidal yet I have not acted on my thoughts or feelings for years now. Most I have done is take massive doses of neurontin but I know that doing so will not kill me. I am pathetic.

My last day (Jul 1, 2011)

Woke up with my leg killing me, not sure if I could walk. Got out of bed and it wasn't too bad. Today is the day that I am ending my suffering. Either late tonight I will hang or od. I haven't quite decided what method I am chosing.

It's all because the medical docs refuse to treat my pain and the stupid pain management doc needs to have me screened by a psychologist before he will do anything. I need to wait 6 wks for all this. Too late. I won't be around.

I have been in chronic pain the last few months and I just can't take it any longer. I cannot live like this. I have done things as normally aspossible so no one has a clue what I will be doing though I have confided in a couple of people. No one is to blame except for the drug addicts who make doctors work harder to screen out those in chronic pain vs those that are abusing it. And also the lawmakers who make it difficult for doctors to treat those in pain by making rules of how much they prescribe a month. I curse these people that have no idea what it is like to be in pain 24/7 and have no relief. I have seen all types of doctors. My therapist and psychiatrist can no longer help me. All they can do is provide supportive care. I know they will be the deepest hurt by my actions. But I hope they know that me not suffering anymore somehow helps them.

Everyone says I should go to the ER to see if they can give me something but I just ran out of hope. Or maybe it's just that I feel so helpless. Right now my foot/ankle is a ten. I just plan on going to work to finish my last project for research. Then it's all over.

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Bad few weeks (May 26, 2011)

The last few weeks I have been in a deep funk, made worse by the events of this week. Two weeks ago, I had a bowel accident. I had stayed in soiled underwear the whole day as I had no idea I was farting stool bubbles. I was mortified to say the least. I had to go back to work because of samples. It was the first week back from vacation and there were a lot of subjects. I went home, showered and changed and had therapy with my bozo. Towrds the end of session, I had a severe spasm in my left foot. This caused the intractable foot pain to start and I have been in pain ever since. This week (5/23) I had a bout of diarrheal illness. I really crapped my pants, twice. Once while passing gas and the other just by shifting in my seat. My mood has gone from worse to totally darkness. I have never felt so humiliated and demoralized. All I can think about is ending my life right now. The next day I see podiatry to find out what is wrong with my foot and he says NOTHING! All the structures look fine on the x-ray and even if I have an MRI, things will most likely be normal. It most likely ALL due to nerve pain. Just shoot me now. I have never felt do lousy as I do right now nor so damn hopeless. I have to be treated by yet another doctor who probably will have no clue how to help me nor have the adacedy to tell me the truth. I am so tired of living in pain every single moment of every since day. Bozo thinks I should be in the hospital but I don't think that will help. I'm just so damn frustrated. I have been doing the bare minimum at work, except I called out monday because of the puking and diarrhea. 

Since Tuesday when I saw the foot doc and he had no answers for me, I have just felt like the world ended. CES has continued to wreck my life. I cannot escape the nerve damage. I cannot escape the pain and that combine with the mental pain I deal with on a daily basis just makes me more suicidal every day. I just want to end the misery everyday. I told my therapist I would end my life this week but I have no energy for it. Imagine being so low that you can't even end your life because it just drains you.

Now to add to my aggravation, my neurologist won't be available next week as she won't be in the office. I reschedule for an afternoon appt and they need to hange the time, which I cannot do because my father is having surgery that day. The secretary then tells me the next fricken available is DECEMBER! WTF! I am so pissed off right now it's not funny. I'm emailing her and telling her I want a referral to another neuro as this is ridiculous.

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Why do I continue to live?

I guess I am not as great a blogger as I wanted to be.  The past few weeks have been really busy with work and by the end of the night, all the energy I have left is for my gaming on Facebook.  Once again I have come at an impasse with my therapist.  I had last week off so I had some time to think about our relationship.  I came up with the same things that I have been thinking for a long time now: I don’t want to continue in treatment, I have no reason for living nor do I wish to live anymore. I just don’t have the energy to actually kill myself. I have not been depressed over the past few weeks. I just have been seriously of ending my life, usually by hanging, just for “fun”. Almost like a “double-dare” to myself.

Now that I am back to work and my research job realized just how much I do work my butt off, I really just want to end my life.  I’m needed yet I really don’t care.  I have become callous or maybe jaded, maybe both, to how others perceive me.  I just feel so dead inside. Not cauldron is stirring but yet I feel that if I don’t try and end my life, I might just go crazy. I have no intention of living any more yet I seem to do just that. I get dressed, go to work, fulfill my obligations and responsibilities yet nothing gives me pleasure or joy. I just do it because it keeps my mind off which tree branch will hold my weight.

My therapist has finally realized through a “consult of my own” the reasons for my misery and yet we are seeking the counsel of an outsider who deals with suicidality. I have often wondered if he would be of help. But how is he supposed to make me want to continue to live when I do not wish to breathe anymore.

Another sleepless night 2

For the past month, I have been in some serious pain. My foot has been really bothering me and nothing seemed to help except for taking pain meds when it got to the point of not being able to bear weight on it. I needed a refill of meds so made an appt with my PCP to fill him in. I am glad I did because I have a stress fracture in my foot. Nothing traumatic happened but I am willing to be bet a severe spasm caused it to break a bone in my foot. I was supposed to see the foot doc last week, but the day before, I some how ending up taking out my back.  I couldn’t move for most of the week and my hip was hurting pretty good so I thought I really messed up my back or caused a muscle tear in my hip. After nearly collapsing on the stairs while going up to my room the other night, I finally decided to go to the ER.  At first they thought it was a hernia but tests were negative so they think I might have strained a ligament. I still have the burning hip pain in my back and am kind of stiff, but the pain has been manageable since leaving the ER.

I haven’t seen my therapist in over a week. We have been having phone sessions because I can’t walk or sit too long without pain. I managed to work this weekend but by the end of the night, I was still hurting. I must be twisting something while I am walking because even while I was taking a step that I thought was normal caused a twinge in my back and buttocks.  Right now it feels like I have a hot poker in the back of my hip/back area.  I was going to cancel the appt with the Neurosurg but now I am thinking it might be a good idea. I am calling my PCP tomorrow as I know I did something and I think I might need PT to work things out again.

Mood wise, I have been up and down. One minute I am fine, the next I want to hang myself from the nearest beam.  I had bozo read the chapt by Goldblatt in Jobes’ book.  All she got was it was me trying to tell her to get support. DUH. That was part of it. I forgot most of what I read because I really didn’t keep a notebook on it. I finally got the book that Goldblatt has written a chapter on and it is impressive. Part of the reason I have been thinking about him, is that I have been contemplating having a psychoanalytic therapy with him to see if that helps with my suicidality but I feel so hopeless that I don’t even want to try it.  I have no reason to live, I don’t want to live. I just continue to live because it is expected of me and people want me to be around. Yet I am in pain every single day and being in a different body every day takes its toll on me.  I live a lie every day, put a smile on when all I want to do is chop my head off or strangle myself in some fashion.  I would OD but that has not worked in the past and I am too afraid of it failing again that I can fathom going through with that plan again.

My research boss has given me a huge project to do right before I am to go on vacation. I am more than pissed off. But I am going to do as much as I can then say arriverdici.  I am going to DC. I just hope that I can walk and not be in so much pain every day. I know that I will be doing a lot of walking as I will be touring but fuck I can barely walk more than a few blocks right now as it is.

Just a vent

I woke up at 730 this morning with my big toe screaming at me. It then did a little wiggle dance as if to say hi, i'm there, just didn't want you to forget about me. Anyone experience this? I don't know if it's a spasm or not. It wasn't painful just felt weird.

Now my lower back is smarting, side of my leg, ankle, and foot is burning like no tomorrow. If I didn't have to go to work early, i'd take some neurontin but I can't risk a hangover and looks like i'm going to do a 12 hr shift. No one gets that I can't do this anymore. I can't even pathom it. I keep pushing through the pain because I know if I stay home, I will end up killing myself. All I wanted to do today was catch up on my tivo, change my sheets, and possibly make some room to get to my closet. Instead I slept most of the day, getting up at 4pm and then meeting up with some friends for coffee. Sheets and tivo not done. Then I find out I have 102 emails at work, 20 of them regarding my job because the person that was supposed to cover for me didn't and there was panic. How am I supposed to trust this person to cover for me when I am out of town in 20 days??  I'm just so sick of being the lone ranger, of having to deal with loads of responsibilities by myself with pain levels of 8-10 every day, lost sleep, and not having the will or drive to live every single day. I just cannot go on like this. My family doesn't care. My doctors don't care, my bosses don't care. They just want me to be around 24/7 because they don't want to feel the pain of my loss. What about my pain? What about my suffering? Am I just here to suffer so you don't feel bad?  I'm so tired of this shit. I can't suck it up anymore. Every day I think about hanging myself at work just to stick it to them. MGH cares about pain my ass.

I just hope my pharmacy can refill my script for ativan and I can pay out of pocket because it's too early for my refill.  I had to take extra because of everything that was going on with my eyes and mri's and then going psycho. My pdoc didn't want me taking my anti-psych meds if I had a pituitary issue so told me to take ativan instead. Sure it calmed me down but didn't help the paranoia or voices. Thankfully i'm not paranoid but the voices are still there telling me i'm an addict, criticize me all the time. 

I really just wish I don't wake up tomorrow. I just hate being this miserable and having no one to tell it to. An untold story.

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Crazy thoughts (Mar 25, 2011)

The past two weeks have been stressful because I have had eye problems and back problems. This has increased my anxiety levels which has also increased my paranoia and delusions that someone is going to kill me. My whacky brain has decided that snakeheads are after me and the only thing I can think of that relates to this is the villians in Stargate the Jaffa or G'oulds. The voices are not making this easy. They are keeping me up at night (like tonight) try to prevent me from sleeping.  I so jus want to die.

After these consecutive MRI's, they found nothing wrong with my head or lumbar. Though I might have cysts in my pituitary that the neuro-opt guy is not worried about. Fucking great. My psych wanted me to call her today to see what happened and I just told her I would call her tomorrow. I really didn't want to talk to anyone. I'm just so fucking pissed that I just need to keep doing what I am doing. In other words, nothing is wrong physically with you so just continue to suffer in pain because there is no other treatment for you. No option for my migraines, so i'm just going to tell my neuro to prescribe me fioricet as the triptans my insurance won't cover.

I've been so damned stressed and having bad AH that they keep telling me i'm an addict. Because of this I just don't take the ativan or vicoden when I really in severe pain.  I will only pop an ativan or two if I have spasms in my foot.  I had them real bad about 23 hrs ago. My foot is still sore as my muscles were so contorted. But nothing is wrong with me. I'm just living with chronic pain and is sucks so bad all I can think about now is ending my life.  I so want to learn to make a noose and put my plan in motion about hanging at my job. Why? Because even though they portray signs saying "they care about pain" they never do a damn thing about it. For 10 yrs I have been living this way and all I get is the bad news about how vicoden leads to "other" problems. Fioricet leads to rebound headache, whatever that is. All I know is my vision is blurred and my right eye is painful to light and sound when I sometimes don't even have a headache. But nothing is wrong with me.

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Another sleepless night

It’s been a long week. My eye exam didn’t exactly go as well as I had hoped. Seems like I have a visual field problem in my right eye and after a bunch of testing that came back negative, I need to have an MRI to rule out something pressing on my optic nerve.  The same week, my bladder gave out on me and with the new nerve pain, I am thinking my L5-S1 disc is on its way out. The stress of not knowing what is wrong with me has caused me to become psychotic. I have been feeling paranoid on and off the past few weeks but while I was taking one of the eye tests, I heard voices as the thing was moving.  Dr. P doesn’t want me to take the perphenazine until the pituitary has been ruled out. So in the friggen mean time, I just get to be fucking nuts.  But I am to take ativan just to calm me down and let me sleep.

Then yesterday to make my physical problems A-OK, I find a couple of lumps on my nipple.  Just shoot me now. I really can’t take this stress anymore.  Tomorrow I need to call my pcp’s office and go for yet another exam of some kind for that. Well, I am out of ativan and it’s kind of good that I am as I would probably take the whole bottle now.

I emailed my cousin and friend in DC to let them know I might not be able to keep my plans to visit the end of April.  Which sucks because I was really looking forward to getting away from Boston for a while.

Writing

Out of boredom at work, I began reading an AARP magazine and found an article about self-publishing.  I have no clue about any of this but thought it might be a place to start other than writing on this blog. I actually wrote to someone I know who is writing a book right now on how to write a book. People have always told me to just write but my perfectionism always gets in the way as I edit what I write or half way through the writing realize it is stupid and stop, never to pick up the keyboard again.  We’ll see if this person writes back to me. I also wrote an email to a columnist at the Boston Globe to see if she will write something about cauda equina syndrome.  I think I have a 98% chance of her writing back to me, if that.  I would really love to write a book about people’s stories about CES, how they got it, deal with it, etc but it never comes to fruition. I talk about it in the group but after a week or two, people move on to something else and the subject stops cold.  For those that have written about it, I usually keep their emails in the hope that I actually have the time to put this together, all I will need is their consent to publish.

On the comings of my life currently, last week was hell. Not only did I spend more time driving all over creation, but pain was bothering me big time, my father’s MRI results were not good, and my eyesight in one of my eyes is bad and something neurological is affecting my visual field.  I had called my neuro and she is out of the office until later this week so tomorrow I am going to call my PCP and demand an MRI as I seriously think my L5-S1 disc is on its way out or the inflammation of my S4 has gotten worse. But that doesn’t make any sense as its in the sacrum. Stress wouldn’t affect it directly and it’s not like I’m falling on my tailbone or having some trauma to that area. I really need to get the MRI I had last year and see what is up, course with them not giving me contrast, it will be difficult to see new damage vs old.  Sad I know all this shit. Like one of the docs that has joined the group said, sometimes having this knowledge is not good!