Category: cauda equina syndrome

Birthday in Review

by Midnight Demon, posted in bipolar, blogging, cauda equina syndrome, suicide, suicide attempt

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Birthday in review

This time last year, I was thinking of taking my life. I was sure I was going end things. My book was done and I didn’t care if it got published or not. But I had commitments to keep. I had to keep my relationship with my writing partner. I had to keep going for my therapist’s sake. And by the time this day came, I really didn’t want to take my life. I wanted to see my book published. I wanted to see if I could lose weight (I would gain and lose for most of the year).

The relationship I have with my therapist is unconventional. Today, I finally saw her after months of not seeing her. She dressed my 3 ft bear with a birthday hat and a card. The card was a goofy one, as show in this post. But the words that she wrote really touched me. She called me exceptional, something I have never heard before. Unlike my father who said that I smelled. I didn’t shower today and don’t plan on it. I did way too much today and my ankle is thanking me kindly. And I still have my party to attend.

My therapist is someone who is very extraordinary. She goes beyond the limits of any therapist I have ever had before. I have had 12 before her so I know. She has always been there for me, at my worst times and is usually available for the extra session or two when I really need it or when I don’t want it. Though she is terrified of losing me when I bring up the “S” word, we work through her issues as well as mine. I finally had the idea of using a code word to tell her when she has become tense. There is a baseball on her desk that she keeps there. She knows I am a baseball freak so the word baseball would not in itself clue her in that I noticed a change in her demeanor. So I came up with “baseball on your desk” as the code word. In that process, my hope is that she gets ‘grounded’ and figures out that I can tell she is tense so I can be more comfortable being open to my dark feelings. It’s a process. I don’t know if it is going to work, but we’ll see.

This year has been tough. Not every month was a good month. I got hospitalized again this year because I was close to ending my life, again. I don’t think I will ever be free of wanting to end my life, and I know that one day I will succeed. But right now, it’s not on my mind. I just am letting the day be and hope to god that I don’t crap my pants today because of this damn cough I got. I am not living, I just am being a part of this thing called life, which I hate. I still don’t want to “be” anymore. But like I said before, I have commitments to people that I take seriously. I have responsibilities to my family, whether it is helping to pay for bills or watching my niece when my sister needs me to (and I am able to). I have “grown up” the past year, though it wasn’t an easy thing to do. I am learning to live on a fixed income, which isn’t easy.

I became more active on Twitter and met people close and afar. I have been involved in chat groups, something that I have missed since the early days of the internet. I follow my childhood idol, Wil Wheaton and his wife, Anne. I have learned just how geeky Wil is and how much his wife adores animals. Just recently, she rescued a pup called Lucy. She is only 10 weeks old and was malnourished. Anne found a good home for her and the pup is doing quite well. It brightens my day when I see a PUPDATE text on my phone (I have mobile notifications for both Wil and Anne as well as a few other members of the STTNG cast). Twitter has brought me to socialize on social media in ways I never thought possible and to expand my network, making new friends every day. Most of my Twitter buddies are therapists as I try to spread information about lived experience and my thoughts about suicide prevention. But I also have buddies that I follow for baseball and my beloved Buckeyes and Huskers. I follow them to keep abreast of new information. I don’t read newspapers so Facebook and Twitter are my news info. I just recently made 300 followers. I hope this time next year I have 400.

What also has been a life saver for me is my writing on this blog. I do it whenever I feel like it or when I have to express my feelings in a safe way. I doubt I would still be here without the blogger world support. A few months ago, I asked if I should keep the blog or shut it down after my hospitalization because I was getting negative feedback. The response was an overwhelming yes. I guess it is true that a few bad apples can spoil a good thing. I have tried to avoid these apples but they creep up every now and then. One blogger comment basically was begging me to kill myself. I have noticed that when my blogs are at the worst, is the only time s/he “likes” my posts.

I can write more, but I have a party to attend…my own! So if you are reading this and are struggling, hold on, there is hope!

oh what a day

by Midnight Demon, posted in bipolar, blogging, cauda equina syndrome, depression

Oh what a day

My PCP was 25 minutes late. That started my day just perfectly. When he came in, the appointment commenced just as I predicted. He poked and prodded my ankle and toes. Told me I needed to lose weight. Said that my back was muscular in nature and then handed my prescription for my pain meds for the month. He also tested my urine as I told him it smelled really bad. I don’t know why. I hope I don’t have a UTI.

Next appointment, I was a half hour early but I had forms to fill out so that is what I did. Fill out the same forms that I filled out at the other PT place. Wish they would get their shit together. Appointment lasted just about ½ hour. There was some confusion on what treatment to pursue. She said she would try the ultrasound but I still need to do the strengthening exercises, but we’ll start slow. I told her which ones made me hurt more and she seems like she is willing to work with me. Better than the other idiot. I then go for aqua therapy when the “dry” therapy is over in four weeks. We should know by then what is helpful and what is not. I am feeling hopeless about the whole thing. But at least it gets me out of the house a couple of hours. She doesn’t know if she will be the one leading the aqua therapy or if it will be someone else. After the appointment, I got really frustrated because she did nothing but evaluate me. I have to wait until next week to actually do something. My back was not happy with the evaluation. Anytime I had to move, I hurt. I just feel like giving up. I don’t know what the point of all this is. My ankle is not going to get better. But I will go through all the rig a ma role to see if it does decrease my pain some.

It’s going to be nasty out tomorrow. But I am driving the 30 miles to see my therapist. I just hope the car has gas or I won’t be going anywhere. And that will really suck.

My mood has been up and down all day. I was really hungry when I came home from my appointments and found I couldn’t cook anything because my mother was baking. I nearly had a fit. I hadn’t eaten anything all day because I woke up late. Well, really, I woke up very early (3 am) and then went back to sleep around 5ish. I just couldn’t sleep. So around 0430, I took some Ativan and hoped that I wouldn’t sleep through my alarm. I woke up about a half hour before it went off. I had to take a shower and get ready. I didn’t want to get out of bed because the pain was bad and I was groggy from the short nap. I knew that what was going to happen. I hope it doesn’t happen tonight. I need to be out of the house around 9ish so I can be at my sister’s work by 10. All of this is dependent that my pain isn’t through the roof and the roads aren’t icy like they say they are going to be. I am not driving 30 miles in slush!

I feel awful. I am tired and my stomach keeps giving me mixed messages about whether or not it is going to hurl, all because my throat is dry. I haven’t had anything to drink except for my latte and some water at the doc’s office. I didn’t drink anything with my supper because I just didn’t feel like making something or getting a bottle of water. I think I would feel sicker if I drank something. The cough is giving me dry heaves, which is why I don’t want to drink anything. I know that a little stuff will come up and I don’t want that. Fucking cough is so damn stupid. I didn’t cough once while I was at the docs then when coming home, I couldn’t stop coughing. So annoying!!

Just Depressed

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain, depression, mood disorders, psychache

Just depressed

For some reason the cough that I thought had gone away has returned with a vengeance. It is not helping my back pain at all. I feel horribly depressed that I can’t move without pain. To make matters worse, I don’t think I will be seeing my therapist on my birthday because there is a storm on its way to Boston and it will hit then. Just great. Mother nature hates me.

I really am dreading my birthday this year. I really just want to take my sister’s car and just leave town for the day. But I know my sister will need her car back. I probably would have left months ago if I had a car.

I keep thinking I don’t have anything to do tomorrow but I have two appointments. I have my dreaded PCP appointment and then I have PT. I am dreading the PCP appointment because I know he is going to say something about my weight. I plan on wearing light pants so I can weight less on his stupid scale. Maybe then he will be happy. Last time I didn’t care and wore heavy jeans and kept things in my pocket. I weighed 8 pounds heavier than my last appointment. He flipped out on me. But this time I will be seeing him not only for my med refill, but also because I have this cough and back pain. My prediction is that he not only is going to tell me to lose weight, but also that I have a viral infection. He’ll give me a script for my pain meds and then its see you next month.

I hope the bastard is on time because my appointment with PT is two hours from his and I need to catch a shuttle bus to get there. I was looking forward to this appointment but now I just don’t care. After the possible poking and prodding of my PCP, I know the PT is going to do the same thing, if not more prodding to assess my ankle. I will be lucky to walk out of there. I won’t be wearing my AFO. I have given up on wearing it. At this point (2 years later), I don’t think it is doing me any favors.

I just am really down today. I watch the Pats game and that made me feel worse. They played like shit but somehow got the win. It was a very ugly game. Brady (quarterback) got sacked like 4 times. I think if he had better protection, the game would have been different.

I really am not looking forward to my birthday in a few days. I wish it was today just to get it over with. I just want the hoo-hah to be done with. I am not looking forward to having my family give me gifts when I didn’t get them anything for their birthday. And I know my cousins and aunts are just going to give me the “this is your birthday and Christmas gift” like they do every year. I always get stiffed. When I was a kid, I always got birthday AND Christmas presents. But I don’t give a fuck this year. Let them say this and I will just be thankful to have something. It’s better than nothing, right?

Saturday Blog 16

by Midnight Demon, posted in cauda equina syndrome, depression

Saturday Blog 16

I have not felt good all day. But I have been thinking about my cousin all week since he left me a message saying he was getting married today. I wanted to call earlier but I am bad at returning calls during normal business hours. I always remember after 2100. I called my cousin back today and spoke to him. He told me about his wedding and the parties he went to. My cousin married his partner, finally, after being together for more than 25 years. I am so happy to officially see his partner in the family. His partner got on the phone and he told me he sent me lyrics to a song he wrote in the early morning. He was telling me the process of the song and I had to read it. I LOVED it. It was so cool. I hope he records it and sends me the recorded version. Would love to hear the melody of the song.

Last night I had a scare. After I had my difficult BM, I started having increased back pain and my saddle/genital area were throbbing, something that has never happened to me before. It was awful. I had to take two strong pain pills and at least two ativans to calm down. I finally dozed off around 0200. All that time I was freaking out and was so damn tempted to go to the ER. I woke up in the morning and things were better. I still had back pain but it was the normal pain that I have been dealing with all along and not the pain I was dealing with last night. I swore to myself that if it was CES (Cauda Equina Syndrome), I was going to kill myself. There is no way I can handle being a cripple or be fused. I have heard many people who have been fused have so many problems. I have yet to hear of one success story of the many bad ones I have heard. My brother in law has told me that his coworker has received a fusion and is doing well. But I am sure that he didn’t have nerve damage before he got his fusion.

I don’t know why I was in horrendous pain last night. I know I had a difficult movement where I really had to push to get the crap out of me. I had been backed up for a few days as the last time I went was Monday. It is just another reminder of what living post CES is like. You can’t have normal bowels. I still am waiting to go again but it has not happened. I would take another senna but I took one earlier and I really don’t want to take two in one day for fear of bowel cramping.

I was so scared last night that I emailed my psychiatrist around 2300. I told her I was freaking out and that things were weird. I didn’t know if things were going to be better in the morning or not. I would have to go to the ER if things were not good. I feel like I am living with a time bomb in my back and I don’t know what will be the detonator. I have severely herniated discs in my L5/S1 that I am most worried about. I see my doc on Monday so I will ask him if having another MRI will be worthwhile at this point or not. I really don’t want to have another MRI as I need to have contrast and the last time I had one, they couldn’t find a vein so they skipped it. But with my back surgeries, you need contrast to show differentiation between new and old stuff.

I think my plans of seeing my therapist on Tuesday might be foiled as snow and ice are supposed to hit that day. Just great! I really want to see my therapist but I can’t because of the stinking weather. Normally, I wouldn’t care but I know going west of where I live is going to be more treacherous than where I live. I hope that it is nothing and I wake up with nothing on the ground. But some places are already having snow right now so there is still the chance that I won’t be seeing her Tuesday. Things could change as Tuesday is a few days away.