Tag: CES

Cinco de Mayo 2015

by Midnight Demon, posted in Bipolar Disorder, cauda equina syndrome, chronic physical pain, depression, mood disorders, suicidality, suicide

Cinco de Mayo 2015

I got my S’mores frappucino with a shot of espresso. I had to have a real caffeine kick. I didn’t think I was going to go out because all the stuff I took for my bowels suddenly worked, all morning, for me. But things settled down after lunch and I was able to go out.

Had therapy and my therapist doesn’t remember reading the blog I sent her last week. The part she did remember was the nest part, which to me is similar to a hope box. She didn’t call it that and said she wanted to have things remind me of how important I am to people and such. It’s hard to do that when I am still in an environment that doesn’t fully support me in my illness. Today, I told her that my mother made me feel bad because I don’t do things “useful” around the house. My mother wanted me to put her breakfast plate in the sink to be “useful” and it made me upset. I don’t get why my mother has to be mean to me. I feel that giving her half of my paycheck every month to cover the bills of the house should let me live here, too. I just don’t get it.

I got really angry today so I posted on Twitter my feelings. A fellow CES sufferer saw a doctor today for her disability claims. He discounted her having CES, Cauda Equina Syndrome, saying she HAD CES, but once you have surgery, you no longer have it. That infuriated me. Infuriate is my word today as I have used it several times. I don’t get how a doctor can say something like that. If she had a stroke, the result would be the same. I just don’t get it. I really don’t and the more this happens, the more I distrust the medical profession. To me, despite their high degree, are all bozos, unless proven otherwise. I have yet to find a doctor that helped me with my ankle. No one wants to believe that I still have nerve damage in it. That the weakness is just from tendonitis. Just pisses me off, big time. So I have to take pain medication to quiet the pain. Normally, tendonitis heals with rest and therapy. I have been resting for three years now and I still have flare ups of pain. And no one can tell me why I am in pain or why my ankle swells up and all the veins in my foot pops out when I am in severe pain. Course, a doctor has yet to see this happen because it only happens in the after hours, late at night with the pain so bad I want to kill myself. It doesn’t flare up during appointment hours or even during an appointment. I am hardly in pain during the day, usually. But after seven in the evening, almost every night, the pain will rise and if I don’t start taking pain meds it becomes out of control. I have been fortunate that lately I have stayed on top of it. I am kind of lucky that I no longer work because if Friday was any indication, I would not be able to walk and stand eight hours a day. I would be in too much pain. Friday I walked more than I should have and paid heavily for it. Only reason I walked too much was because the eyeglass place made my glasses wrong. If the idiot explained to me what he meant by distance, we wouldn’t have had this problem. I still haven’t gotten my glasses back yet. I will call tomorrow and find out when they will be ready. I need them to read Dostoevsky. The glasses I am currently wearing can only go so far and then I start straining my eyes to see with them. It sucks having bad eyesight. I have been wearing glasses since I was in first grade.

My therapist and I talked about the chat that had me upset Sunday night. It’s like, am I smarter than all these clinicians and therapists in this chat when it comes to suicide prevention? I understand they want research and evident based treatment, but the research is there. If I know about it, why don’t they? I don’t get it. I don’t even hold a bachelor’s yet I know what needs to be done for a suicidal patient. Understanding, compassion, empathy, and the client telling his story. Treatment can be DBT based or CBT. I understand not everyone is trained in these modalities. There is a “short” kind of CBT, Cognitive Behavioral Therapy, that seems to help veterans in as little as five sessions. This is from what I have gathered on the internet vines and through the research of Jobes. So why do they not trust these kind of therapies is beyond my understanding. If they are looking to predict a suicide, they will have to wait a really, really long time for that to happen. You can’t predict a suicide anymore than you can predict cancer in a patient. And if this prediction is what they mean by prevention, they don’t understand anything about suicide at all.

Good Day Turned Bad 2

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression

Good day turned bad

Warning, might be triggering or gross

I am still trying to be positive as today was a good day but on the way home, I leaked more than I have in the past, got bladder spasms while peeing, and my ankle has decided to throb with severe intensity. It’s very difficult to not slink down into a bad mood when the nerve condition you sometimes forget you have, slaps you in the face as a reminder your nerves are fucked. One of the people in my support group saw a neurosurgeon who “blew her off” when she asked him repeatedly what to do about the CES. He told her that once you get a stroke, you still have a stroke. That is the best way to put it. She got offended and it kind of pissed me off because he was right. I don’t know why she got mad because he was telling her the truth. Whatever you recovered in the first two years is what you are going to recover. Anything more than that after a two year anniversary is a bonus. If I didn’t get CES the second time, I think I would have been ok and not have the bladder problems I have currently or the ankle problem or the bowel problem. I think I am getting sensation in my rectum again and that is why it is hurting when I poop, even if the stool is soft. But my having bladder spasms is unusual as I wasn’t that full. I had emptied my bladder while at the doctor’s office. I didn’t have spasms then and I didn’t drink that much water on the way home. I might have had four ounces total. I just don’t get it. I know I should have a urodynamic test done but I am too scared to go on my own. And I don’t have a good friend to go with me because they are all male. I could ask my sister to come but that will open up a lot of questions and I really don’t want to answer them.

If you are just tuning in and wondering what the hell CES is, it is Cauda Equina Syndrome. It occurs when you have trauma to the horsetail part of the nerves from your back. You can Google it if you want more information or go to http://www.caudaequina.org.

My doctor’s appointment went well. I didn’t have the heart to tell him I was suicidal. Course I don’t feel that way today, which is why I answered no. As I was making the follow up appointments for my pain management, I realized that today would be the last day I see him, unless this bladder thing turns into an infection. He didn’t go off about my weight as I was down two pounds since the last appointment. I hope I can keep that up. But why bother, if I am just going to die in a few months time. My therapist still thinks that I am going to pull out of this. She said that I don’t know how many times yesterday. But I really don’t see the point as I can’t struggle anymore with this stuff. I am tired of fighting all the time. It is exhausting to be in pain all the time, to change my underwear constantly, to shower because I pooped myself. It just isn’t the way I want to live. And no one understand that more than a fellow CES sufferer. I would get support through the group but they have been annoying me lately, least the one on Facebook is. Facebook has been really annoying me lately. I think after my game ends at the end of the month, I am going Facebook free for a while and just be on Twitter. I have no idea what my Facebook feed is going to look like without my game requests. If it’s anything like my mobile feed, it’s going to get old very quickly.

I didn’t have therapy today. I kind of wish I did. Though at this point, it’s just checking in, least that what it feels like. I still don’t get the point in talking to her. I know we are never going to go over the blog that I wrote about the reasons for dying. She just doesn’t inquire, though she will ask about other assessments. I think her anxiety of losing me is just getting in the way of talking about how I really feel. Lately, I have been telling her but feel like it’s going in one ear and out the other. Hopefully, tomorrow we will “talk”.

Easter 2015

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

Easter 2015

I had Easter dinner same as always, at my sister’s house. And as usual, I overate. I couldn’t help myself as there was a lot of good food and goodies afterwards. I feel like I should nap, but I did that last night and then woke up around midnight. I even had a cup of my coffee and I am still sleepy.

The day would not be complete without an insult from my father. He said my haircut was lousy. Instead of wearing a hat like I usually do, I decided to fix my hair with gel. He never has a nice thing to say to me. I don’t know why I bother sometimes. I told him thank you after he told me my hair was lousy. It is growing out so of course it looks lousy. But did he really had to say that? Of course he did, because the man doesn’t know how to give a compliment to save his fucking life.

Last night, as I was trying to relax and snooze, my phone was blowing up with text messages. I was really like who the fuck is texting me. I knew it was from Twitter because they were successive texts. For some reason, if the text message has a new emoji, I will get up to 3 messages for the same text. It is so annoying to have the message broken up this way. But I have no control over it. I checked my messages and the person blowing up my phone were all direct messages from a dear friend of mine. She was telling me all the reasons why I should be here and that she needs me to be here, etc. I had messaged her the other night when I was in a bad mood. So she wrote a lovely, albeit multiple, message about all the reasons I should be here. It was really sweet. I haven’t responded yet because I am trying to think about what to say.

I missed the weekly BPD chat this week because I was spending time with my family. For some reason 4 pm comes very quickly on Sunday, no matter what I am doing. I like attending these chats because I know many BPD people and it always gives me insight into trying to understand where they are coming from.

I didn’t sleep as late as I wanted to today. I kept on waking up every couple of hours. I don’t remember the last time I slept more than 5 hours straight. I keep waking up due to pain. I can’t seem to sleep on either my left or right side or on my back. And I can’t sleep on my stomach because that is not good for my back. So I am constantly waking up to change position. It totally sucks. And don’t get me started on relieving my bladder. That starts around 0630 and continues until I wake up. Then I don’t go again until I drink a lot of fluid, which could be hours. It amazes me that I can pee three times, without drinking a drop of liquid yet when I do drink, I don’t pee once! Fucking CES.

Since writing the rant of CES the other night, my stats have gone through the roof. I am a number nerd so I keep track of my numbers. I still want to pass my one day view of 172 one day. But the closest I have come is 118 views. But my goal every day is to have at least 20 views a day. I am happy with that. Anything more than that is a gift.

Rant of Doctors about CES

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain

A rant on doctors (CES)

You are diagnosed with Cauda Equina Syndrome. A misunderstood syndrome that is a medical emergency. Yet the doctors never provide adequate after care. They think that once the surgery is done, you should be healed. They don’t tell you it could be up to 2 years or more before recovery is seen. Meanwhile, you become an infant. You have no bowel or bladder sensation. Are given catheters and told to do your own bowel program. I have tried this and has taken me 13 years to figure out what to make me go and what doesn’t. I was fortunate that I didn’t have to use catheters but I know others that do. What really pisses me off is that there is no help dealing with this syndrome mentally. It shatters you to the core. The pain that is dealt with is intolerable. The burning, the zaps, the throbbing, the stabbing. It never ends. You might get relief for a few hours but most of the time you have to learn to tolerate the pain. You want to give up and when you tell someone this, you are thought of as crazy. People don’t understand the mental anguish chronic pain has on you. I am feel so bad for those that didn’t have the help that I did while I was in the hospital. I was on suicide watch a few times but I got through it. I still have strong suicidal feelings because I just cannot tolerate pain any longer. But I am still here, despite these feelings.

Doctors don’t know everything. You may have to see several different specialists to deal with CES. I would strongly recommend finding a psychologist or therapist in your area to help deal with the debilitating pain, disability, and loss of self. Whatever you were before CES, it is now gone. You will never go back to that life. I will never be able to walk a 20 mile walk a thon because I can barely walk around the block without severe pain. As tough as it is, you must get used to this new life. There are no doctors that specialize in CES. Some have never even heard about it and if you look it up in a textbook, I am sure it is just a small paragraph. That is what makes this syndrome so damn frustrating. You have to see a neurologist if you want the best care. A GP or internist is not going to be helpful. Finding someone to listen is also key, though it may be hard to find. Don’t give up looking. They are out there! The weird thing is, as I was in the ER unable to walk, surrounded by neurologist residents and neurosurgical residents, not one of them told me that I had CES. It was my psychiatrist that told! I paged her at 4 in the morning to talk to her and get her opinion on what to do next. I needed to hear her voice because I knew she knew what I had. I have been lucky that both of my CES surgeries happened in the early stages and within the timeframe. Otherwise, I doubt that I would be writing how I recovered. It took a long time to get use of my legs again. I went from walker to cane to AFO to nothing. It didn’t happen overnight. It took months of rehab and perseverance. If I can get through the pain, you can too.