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.  

Blog 1st of Marzo (Mar 6, 2011)

Been feeling good the past few weeks, all with the exception of physical pain for the past two weeks. My leg/ankle/foot have made my life pretty difficult. The burning pain is driving me nuts so my neuro has decided to put me on a new med called Lyrica. Some people in the group have had good results with it. Others have not. So this will be another trial and error for me. I just hope that the 50 bucks will be well spent.

The group will be making T-shirts. I really love the idea and hope it pans out. The group is planning a get together in mid april.

Well i'm pretty much falling asleep while writing this as it's 0235 and my meds are so kicking in.  Until next time

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