Tag: chronic illness

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.

Three feet from the bureau

by Midnight Demon, posted in Chronic pain, chronic physical pain, depression, suicide attempt

Three feet from the bureau

In October of 2012, I was caught in another flare up. It was night time, well past business hours of doctors and therapists. Normally I am good at reaching out. I text my therapist. I write in my journal or blog to get through the episode. But this night was different. I snapped. I couldn’t bear any weight on my foot that night and it really made me feel like I couldn’t go on. I was so tired of feeling like an invalid. I wanted to die in an awful way. Problem was that I couldn’t get to my bureau three feet away to get the meds I needed to do me in. Any time I tried to move, I was in agony with horrible foot pain. I could barely move my foot out of the covers of my bed let alone stand long enough to shuffle to the bureau. I cried as there was nothing I could do but take what I had at my bedside. It wasn’t much but it was enough to make me unconscious and away to dreamland I went.

When I awoke the next morning, I was in a dreadful mood. I wondered if I had really done what I thought I did. I checked my pill box and it was empty. I checked the contents of my pain meds and it was close to empty. I couldn’t believe what I had done. But I survived it and am living to tell about it. How I woke up I don’t know. I felt ashamed of myself, not in surviving but of making an attempt and not seeking help. I had promised my doctors that if I felt like I did that night, I would call them. But no phone calls were made. I had a confidential suicide hotline to call but I didn’t. I had made suicide prevention part of my treatment plan but yet the crisis response plan went out the window that night. I didn’t implement any of it. I just took pill after pill until I passed out.

This scared me. I was no longer in pain yet who is to say that if this happened again I wouldn’t try to end my life again? Dealing with chronic pain is a beast. And so many times it doesn’t get a flag for suicide risk assessment. My better judgment wasn’t in gear that night. I not only wanted to end the pain, I wanted to end everything. I spend the next few days in a haze, and not from medication. I was scared to let my practitioners know what I had done. I finally broke down and told my therapist. It was very difficult admitting my attempt. I then told my psychiatrist and she shocked me by saying that if I wasn’t in pain, I wouldn’t have done what I did. And it’s true. Chronic pain changes you, not only physically but mentally as well. It took me a while to write about what I had done on my blog. After all three feet was the only thing stopping me from ending my life or attempting to. I’m still fearful about making another attempt while in the throws of another flare up. I keep a small portion of my meds by my bedside so they are not lethal. I was lucky I didn’t need medical intervention the next day. I still am not quite sure how many pills I took that night. And that also scares me because who is to say that the next time I won’t count them out.

Chronic pain is not something to underestimate. Hundreds try to end their life year after year because of physical pain. Most people see their doctors before an attempt is made. The question remains whether an assessment is made for either depression or suicidal thinking. My primary tries to assess my mental health but mostly just asks when my next appointment with my psychiatrist will be. It might be followed up by will I call him if I feel like taking an overdose of my pain medication. Yet he knows he is not the first person I will call. In my order of people to call: my psychiatrist, therapist, primary, then ER if I can’t get a hold of one of them.

That night, I didn’t call anyone. All of my safety plans went out of the window. All because I was overwhelmed by excruciating physical pain. I think if I could go back in time, I would have taken the time to breathe. And think more of self-preservation rather than self-destruction. I am more aware now of what to do but it’s not that easy when you are in the heat of the moment. A month ago I was again in excruciating pain for three days yet suicide was the furthest thing from my mind. I knew what to do to cope with the physical pain. And luckily that didn’t involve a bottle of pills. I felt the attack come on so treated my pain much earlier than I did in October. This helped to keep the suicide demons at bay. I texted my therapist, I emailed my primary that I was in excruciating pain. I also got in touch with my psychiatrist who help me to see there was a tomorrow. Doing these things didn’t make my physical pain hurt less but made my psychological pain bearable. It helped me to cope through this rough patch.

Being mindful about pain is how I get through bad flare ups. I have no control over these pain attacks. But I do have control over what I do with it. I learned my lesson from that October night.

A Tired Ramble

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

A tired ramble

I should be sleeping but I am fighting sleep right now. All the bad thoughts are coming out. I feel like I am a worthless piece of shit. I need a haircut badly as my head itches. I don’t think cutting my hair is going to solve the problem (it’s dry scalp) but least I will feel human again.

Snow has hit the city where I live pretty hard. We have a travel ban in effect and the governor has stopped public transportation from running. Essentially, I am trapped in my house. I hope that it is all cleaned up by Thursday so I can have lunch with my high school friend. I know we are going to talk about my book. He is taking me to a Thai restaurant in the Back Bay. It must be a new place as it wasn’t there when I went to school. Or maybe it was and I just never went there because I didn’t like Thai back then.

My pain levels are excruciating, too. Which is why I cannot just shut the light off and go to sleep. Pain that was in my leg but now is in my foot. It is dancing around, all over the place, with the same intensity like a hot poker stick. I just took some pain meds so I hope that calms it down. I also took some Ativan to calm the fuck down. I don’t know why I am so damn anxious but I am. I know part of it is because I haven’t talked to my therapist in a week. She had to cancel today’s session because, well, like I said, everything was shut down. I don’t know how she is going to get into her office but whatever. She canceled for tomorrow’s session because school is closed but is going to try and have some evening time. I guess it all depends on if she can get child care for her daughter.

I emailed my pdoc again because I need refills for my meds. I got no answer from the one I sent the other day. I am getting frustrated with her!! This is sucks that she is out of the office and I can’t see her and then when I email her, I get no response. What the fuck kind of patient care is that?? I am so bullshit!!

Then tonight I decide to read Uncle Tom’s cabin and this little girl I fell in with dies. I have been in tears for the past hour. It was so sad that she died. I think she had some kind of heart condition. But then, the author didn’t elaborate on the illness nor was the medicine back in the early 1800s very good at diagnosing difficult ailments. Her father is heartbroken and her mother, who was a basket case to begin with, is playing the part of grieving mother. I just want to slap the mother silly as she just wants sympathy from all her servants and no one else can show sympathy. Beecher-Stowe really is a good writer, better than I could ever be.

I have been up since 0430. It’s now almost 0100. I am dog tired. I should be passed out by now. I spent some time reading today. I read a hundred pages in my civil war book and then I read a “dictionary” called the definition of suicide by Shneidman. Holy hell this man uses big words. I am glad I know the language so I can follow along (I have read his stuff before so I know his terminology), but some of it I am like really?? The word is archaic now and he is using it?? He was a funny person. I wish I got to know him better before he died.

Today is my best friend’s birthday. I wish I was in Chicago to celebrate with him.

I haven’t heard from my problem blogger in a few weeks. I hope that means she is gone. And if she comments to say she is around, I will just delete it. I don’t need her negativity in my life. I hate when people try to push their beliefs on to you and think their way of thinking is right and the ONLY way to get “better”. I don’t need that in my life. Never have and never will.

My Twitter followers is strange. The numbers will go up and then the numbers will go down. I had 343 followers. Now I have 349. I think I will have 345 by the time I look back on it tomorrow. I think it is probably bots that follow, not real people. If they are real people, and I don’t follow back (I won’t follow unless I know them or they meet my criteria for following them, which is basically working in the mental health community, a baseball lover, or something else that attracts me). If they are just authors looking for endorsements or life coaches looking to save my soul, I won’t follow back and if they become problems, I block them. Like there is this one guy that is “cured” of fibromyalgia. I don’t know how anyone can be cured of that ailment as they only just recently been able to treat the condition and give it a name! But whatever works for him, might not work for everyone. HA, speaking of Twitter, I just got a book app that is now following me! I had a book promotion thing following me for a while. But it costs like 9 bucks for just 3 days of pushing my book. I wasn’t going to waste my money on something that might not work. If I get extra money, I might do it to see if it pans out but my writing partner says it is extremely hard to promote a book and sell it. I am lucky that I sold 5 books this month. Next month I probably won’t sell any.

Meds are finally kicking in. Here is hoping I don’t wake up again around 0430.

Random 743

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

Had therapy today. About 40 mins in, I didn’t want to talk anymore. I get bored easily in therapy. Sometimes I can talk through, no problem. But other times, it’s like pulling teeth trying to come up with conversation. Luckily, my therapist asked some questions so the last ten minutes flew. We talked about my blogs that I sent her. She said she doesn’t know how I write on serious topics so well. I had sent her my Zero suicide and my Twitter rant. The Twitter rant was just a bunch of my tweets strung together to make a paragraph. I just rambled on Twitter one morning because I felt like I had to get things off my chest.

The zero suicide blog was again, something to get off my chest. I didn’t think it was that great but my therapist thought so. She said my writing is getting better. I guess writing every day does that to you.

I got another migraine today, this one not as bad as yesterday. I didn’t go out today because my bowels were unpredictable. And I would have to shower. I don’t feel like showering. I will have to sometime tonight or tomorrow morning as I have PT. My ankle is still smarting so I haven’t done any exercises. I tried doing the rolling ankle and it hurt too much. I wish I knew what I did to cause this damn flare up. But I was just sitting, watching the football game, when the pain started. Drives me up a damn wall. If I don’t have a pain syndrome, I must be losing my mind.

So there has been some problems with my royalties from other countries. I don’t understand what the problem is as there was GBP deposited into my account a few months ago, but yet the Canadian dollar cannot be processed. This was from August and I am just receiving notification of it now. I called my bank and found out that only USD can be deposited into my account. But that is what IS being deposited. And don’t they have the currency exchanged?? I changed banks so I am hoping that solves the problem. If not, I am not sure what I am going to do. My writing partner is baffled because she has had deposits from Australia in her bank with no problem. I hope that I don’t have to open an international checking account just for my royalties. It will suck because I never know how many books are going to sell in a month. Because of this mishap, I no longer can use my other checking account like I have. I will have to transfer money from my current account to the other. Which is a pain because it takes 5 business days to complete the transfer. This is the problem of being an author, an international one at that!

Ankle is starting to throb again. I just realized that I have to request my pain medication soon. I am glad I don’t have to have an office visit again until next month. That gives me some time to try and lose a few pounds. I have been trying but it’s been hard with this depression lingering over me and craving sweets, which have been abundant with the holidays. I just finished the last of the sugar cookies my niece made before she went back to college. College. My little baby is in college. I don’t know where the last 19 years have gone. She was a preemie and now is an adult. A smart adult. Going to college.