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!

Sleepless night

 I cannot sleep tonight because it feels like my foot (nerve damaged) is in a trash compactor being crushed from the toes to the heel, sides to ankle. It is driving me nutty!!! I took some vicoden but OMG this pain is insane!!

Oh and my neuro's covering doc finally called me after like 3 days. Said to go to ER. F You, tell me something I don't fricken know!! Why not save me 10-20 hrs  while sitting in the waiting room and order the damn MRI I need to find out what is wrong!!  Soon as I find some courage, I will call my surgeon. I'm kind of psychotic at the moment as i'm hearing voices and paranoid that someone is watching my every move. I'm kind of hoping that between taking perphanazine, ativan, and vicoden I don't wake up to this misery anymore. I kind of got bad news today at the eye doc. I'm so stressed about losing my eye sight in one eye, my father possibly having liver cancer, going psycho, and pain being intolerable, I guess I just lost whatever sanity I had.  I emailed my pdoc all this (minus the me not waking up as that wouldn't be good). Oh and did I mention I still have to work this weekend??? I kind of wish I was in the Abbott and Costello stint where they say who's on first cause I really could use a belly laugh...

G

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New scare (Mar 9, 2011)

Had a very hectic day and was on the road a very long time. I was really tired by the time I had come back to Boston and when my shift ended, I took a good friend home. Well I hit a couple of good potholes on the way to his house, which jerked my back.  I think it finally knocked a disc out as my bladder has leaked some, more than I am used to. Now I have no choice but to call my neuro tomorrow to get an MRI done. I would go to the ER but I am just so damn tired I really don't want to wait for hours to be seen then wait some more for consults and hours more for testing.

I do know that should this be CES x 3, I will kill myself. I know I will have to have a fusion and most likely will be permanently out of work for a while & the thought of no longer being independent just freaks me out. I rather be dead than to deal with this a 3rd time in 10 yrs.

Meds are kicking in now so I will stop here for now

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Phone…maybe time for an upgrade now!!

3/1/2011

Rather than listening to the radio, I have played my phone in the auxiliary mode of my car. I don’t know what happened, but now I have no sound. The only way I do, is by using headphones!! It’s a little past 3 am but seeing as I haven’t posted a blog in a few weeks, I wanted to write something.

This past week has been a blur, literally.  My pain started 2/19 at 6:30 am and has not lifted much, unless I take either vicoden or gabapentin (neurontin).  Sunday, I was in so much pain that I bought a new cane to walk around the lab.  Co-workers were asking why I am using a cane and I just said my foot hurts real bad. I cannot stand to stand on it.  So by 22:30, I had enough as things were very busy and I was running back and forth so many times it wasn’t funny.  Soon as I came home, I took 1800 mg of neurontin.  Miraculously, I woke up because my cousin Billy came up the stairs like an elephant and was screaming (aka talking) to my mother who is nearly deaf. This was about 11 am. I was supposed to have this day off because it was a holiday (President’s Day) but we had a pt consented and wanted baseline. Fucking great. So after I had a phone session with my Bozo therapist, I called the dialysis unit and was told that the pt was d/c. YAY for me. I didn’t have to go to work today! I can finally rest, so I took another 1800 mg of neurontin. By 2 pm I was goofy and partially sedated. I played my games on Facebook, much as what I am doing now.  I am tired but cannot sleep.  I was going to read some of John Grisham’s book, The appeal but that book had a way of stimulating my brain because I want to know what is going to happen next.

So in my week of pain, I find that my neurologist is on vacation . It was school vacation week. Lovely.  So alligators are nipping at my toes every night and there is nothing I can do to stop it.  So later that day (Monday) I took 2700 mg of neurontin to shut down this pain. I awoke Tuesday in a groggy state. Not surprising and boy did I need Starbucks!!  I had to work on a database  that I have been neglecting and I had a late appt with Bates so I hung out for 3 hours updating the inventory of this database.  Working with excel always makes me tired.  I had 37 pages to change the database so it took all that time to work on it while I drank my mocha and tried to clear my foggy brain.  The next day I saw my psych doc, and I didn’t  tell her I took nearly 7 gms of neurontin.  So I told her about the pain and my father and all that has gone in since I last saw her and she said see you in a month. Fine I said. Course I email her most of the time anyways giving her updates at least once a week if I feel up to it.

The last 3 days of the week were horrible. Pain returned once I stopped taking the large dose of neurontin. And my bones ached so much I thought I should see my foot doc.

3/7/11

I have seen my neuro last week. She wants me try Lyrica (pregabalin) to see if it works better than the neurontin and won’t make me as sedated.  I took the first dose today while at work and didn’t make me sleepy.  I took my meds a little while ago so am kind of sleepy now but wanted to finish this off before going to sleep.

I’m still in pain and right now the bones in my foot are aching so I will need to take vicoden again to quiet it down. Lately that seems to be the only thing that takes the edge off.  I have been taking the ketoprofen but other than keeping my hands limber, it’s not doing much else.  My left thigh has been giving me grief as well as my saddle area.  So I am confused as to which disc is causing me problems.  I need to call my neuro tomorrow as she said there has been problems with email lately.  I sincerely hope that spending $50 on this new med is worth it. I just don’t want to waste all this money like I did with the lamictal just to find out it ain’t going to do squat!

I got a meeting with Bozo tomorrow so I need to get some shut eye.