Category: cauda equina syndrome

really vulnerable right now

by Midnight Demon, posted in cauda equina syndrome, depression, psychosis, suicidality

Had a painful day today. I am very sore from my fall that I took yesterday. Walking is more difficult now because my knee and thigh are involved in giving me pain.

I feel lousy because I still have this cold. I don’t know if it is getting better or worse, but it definitely isn’t going away. I have been taking vitamin D supplements to try and boost my immune system. And no that is not a typo, I meant D. I participated in a trial of vitamin D to help boost immune function and it does work. Since I have been taking it, I have not had bronchitis or pneumonia. It does lessen the effect of the cold but I have been lax in taking it every day.

Voices are still around taunting me. I am trying not to listen to them but it is so tiring to do so. My defenses are already down because of this cold that I got and my pain threshold has been increased. I am just really vulnerable right now.

I emailed my PCP’s office the other night and got a response. I had to laugh and ask myself, did they even read the message?? I told them the nerve block didn’t work and I was not going to see another specialist ever again for my ankle problem. Or have another test done. The nurse writes back “oh I see you have further tests to be done and see a neurologist”. I am like WTF are you kidding me lady!! Did I have to SPELL it out that I am DONE with anything anyone else can think of that is causing me this pain and not help me with it??? My pain meds are working and that is all I fucking care about. Just as long as my doc continues to prescribe them, there isn’t going to be any problems.

I got an email from my pharmacy saying that my medicine, which I just put in a refill on, is out of stock. So today I call to see if it has come in and find out the manufacturer is having problems making it. I am like what??? I heard about this shit happening but not to my medication!! I have enough to cover me and hopefully it comes in tomorrow but if not I don’t know what I am going to do. I need my Ativan! I hate having to ration it and just take it if I really need it. I might have to use more Neurontin to cover my issues as lately it has been helping me with sleep.

Been up since six this morning. I hate waking up this early and I didn’t take a nap today. I am really cranky. I made myself breakfast, like I always do. I might have breakfast for dinner. I am too lazy to make something else. My specialty is fried egg sandwich. Used to be scrambled egg but now it’s fried egg, once I learned how to turn the egg over, LOL. It is not an easy thing to do without breaking the yolk! And I love the yolk. Probably why my cholesterol is high but I don’t care. I just read something today that said that having chronic depressive episodes is “causally linked” to heart disease. So if I am going to have a heart attack that kills me before I kill myself, I am for it! But I wonder if the reverse might be true, that heart disease causes depression?? HMM there is something to ponder! But then you have the health junkies that die of a heart attack so I don’t get it.

Tonight, which is soon, all I am going to do is watch the TV show MASH and laugh. I love that show.

Oh and I forgot…today is my thirteen anniversary of CES, Cauda Equina Syndrome. 13 years ago today I lost my ability to walk and within a month got it back but I had to have back surgery to have that happen.

Cauda Equina Syndrome Thirteen years later

by Midnight Demon, posted in cauda equina syndrome

On this day in 2001, I was showing symptoms of Cauda Equina Syndrome and didn’t know it. I just knew I was in a lot of pain and couldn’t walk or feel my toes. As time progressed this would happen to my right foot and then I knew I was in trouble. I called my psychiatrist a couple days later because I had an appointment to see her. I told her what was going on and she said to call an ambulance right now. I never heard her be so stern before. And couldn’t figure out why she was freaking out. I was in another world of pain and misery that I really didn’t care. But I know that I needed help and I got it later that night. I was in the ER for hours before they finally figured out I have this “Cauda Equina’ syndrome, what ever that was. No one bothered to explain it to me. I was left on my own in figuring it out but I know that I couldn’t walk. I was twenty-five years old and I was in a wheelchair. The residents were telling me I had to have emergency surgery. I felt like I was in a daze, that this wasn’t happening to me. So I asked if this surgeon was a board certified surgeon. She wasn’t but she was “eligible” whatever that meant. I said no, I wanted a board certified surgeon or there was not going to be any surgery. So at five in the morning I got my surgeon and he said I was going to the OR in an hour or so. I bawled. I didn’t know what to do after this. I still kept thinking all I needed was physical therapy and pain meds and maybe a walking device and I would be ok. No, I had to have surgery to preserve what I was losing. Luckily my bladder wasn’t too much effected by all this and I had a good surgeon whose only mistake was putting me on the wrong antibiotic, which later caused a staph infection two weeks later. I still feel like if I was place on the right antibiotic, I wouldn’t have needed a second surgery to clean out the gunk in my surgical bed. I am just grateful they got it in time or I would have been in worse shape.

This happened over thirteen years ago and I still remember it like it was yesterday. I guess you never really forget something like this happening to you. The most humiliating thing was that I couldn’t go to the bathroom on my own. It took several nurses to hold me up and another to wipe me off. You don’t forget something like that easily. You also don’t forget relearning how to walk again, this time with something called AFOs because your feet are still doing flip flops by themselves. You have no control over your feet. You have no idea where they are. Your balance if off and this is a terrifying time. Because it’s been more than three days and you still can’t feel your toes. Doctor said it would be three days and I would be up and walking. What a lie. He didn’t know the damage I suffered. He didn’t care that I was going to be in rehab for quite a while. His job was done. He did the surgery and that was what he was supposed to do. The rest was my job, though no one told me what it was. I had to figure it out all on my own. And I did figure it out months later when I was walking with a cane and visiting a support group for those suffering my condition. Some had it worse than I did. Some had it the same but had bowel and bladder problems. I guess I was one of the lucky ones that just had the foot drop and weird walking moves. I learned everything I could about the nerves and dermatomes. That helped me to understand where my pain was coming from.

Today I still have the AFO. It might not be the same one I had thirteen years ago but it works. It helps me walk without pain. And that is all that I care about at this point in the game.

fearful bad thoughts will return

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, depression

In a somewhat elated mood today. My blog views reached 18,000 today. That means 18,000 people have read my blog since it started in July 2012. Thank you all for reading!!

I had therapy today, again. I see my therapist twice a week, sometimes more if I am having a hard time. I don’t know how we got to twice a week but it did. At one point I was seeing her four times a week. But that hasn’t happened in a long time and mostly happens when I am in the throws of a suicidal crisis. I don’t remember what we talked about even though it was several hours ago. We talked about yesterday’s blog that I wrote. I told her it was garbage but she disagreed. She said that it reminded her of the works of Janina Fisher, the consultant that I think is bogus. She has a weird sense of what trauma is and thinks the self is made up of different parts. That I can believe. But this Fisher character also believes that my voices are not real, that they are just a “part of self”. If that were truly the case, then why does medication make them go away?? My therapist really believes the bullshit this therapist portrays. At first I was accepting but then things got really hairy in the consult appointment with her. I got really mad and expressed it, calling her stuff bullshit in the process.

The point I remember my therapist was making was that she was agreeing with what I wrote about the weird feeling about not feeling suicidal 24/7. She thinks that it is normal for me to feel this way because I have been suicidal for so long and what I wrote made sense. I wish I felt the same but I don’t. I fear that like my depressions, it will come back with a fierce blow. And who is to say that when it does, I don’t act on it? I know this is why I see my therapist twice a week, just as a sort of maintenance and stabilization. Plus, I have been seeing her so long more than once a week that it is weird when I see her less than that. But I am in unknown territory right now. Don’t get me wrong, I feel good that I am not suicidal but it is weird not planning my death or thinking about killing myself all the time. And weirder still, I don’t know what changed to make this happen. I think it is because I have more confidence in myself than I have in the past. But I am still fearful that the bad thoughts will return.

I also think we talked about my father for a bit and his anger issues. I have to deal with him next week as I got the lovely task of taking him the doctor yet again. He isn’t sick, just needs to meet his doctor because he (doctor) moved to a different location. I am not looking forward to it. And because of it, I had to reschedule my appointment with my therapist because of it.

My ankle started feeling hurtful yesterday in a different way. It hurt when I bared weight on it in a spot I normally don’t feel pain. I thought the feeling was gone but soon as I got to the bus stop today it flared up as the bus was arriving. I then decided to get my coffee and do a little food shopping. BIG MISTAKE! I am hurting big time now. I am really kicking myself for doing such a stupid thing. It really annoys me because I wanted to take a shower today and didn’t before going out. Now I am really stinky and need a shower but I don’t think I can stand long enough to get the job done. I have to wait to see if the pain meds calm it down. I will hopefully take one before going to bed tonight. I don’t remember the last time I showered but I know it has been more than a few days time. I hate that I have to keep track of when I shower because my memory sucks lately. It also stinks that because I don’t go out every day, I don’t usually shower on days I don’t go out. It’s just that the depression gets the better of me and I just say fuck it. It costs me too much energy to shower and I just figure why bother. No one notices or comments about my bathing habits but me. So even though I say I stink, my family doesn’t notice it or just doesn’t say anything.

I still am feeling the lower level depression as I was the beginning of last week. I don’t know when it will end. I think it will when I get more sleep. I woke up around six thirty again this morning. I think I need to go to bed later but it’s so hard because by eight, I am exhausted and take my meds to go to sleep. I try to stay up but I get so sleepy.