Tag: chronic physical pain

a little of this and that and transgender too

by Midnight Demon, posted in Chronic pain, depression, suicidality, transgender

Had a horrible day. Spent the entire late morning/afternoon at the hospital with my dad. They still have no idea what is wrong with him and it is starting to piss me off. I feel like my father is living my life in the “I don’t know what is wrong with you” circle. He had some scans done and we will be back next week to find out the results of those scans. Just lovely. Another day of boredom. I will be bringing my laptop and my manuscript so I will have something to work on while waiting for the doc.

I got to talk to my cousin today. Found out my aunt’s wake is tomorrow and the funeral is Saturday. Not looking forward to it but you have to show up and pay respect and say goodbye. It’s going to be a sad day for me.

I am pretty exhausted from today and in pain. I was in pain most of the day yesterday so all I did was sleep most of the day and then be up most of the night. I rather sleep during the day and be up all night. I miss working second shift. It was the perfect balance of not being a day person and being a night person.

I talked with my therapist for the last time this week and she is on vacation next week because it’s school vacation. We talked about my book and how it is affecting me and then she wanted to know more about the voices and I flipped out a little. I couldn’t tell her but did tell her that the voice I hear is actually her, well, not really her but her persona or something. I can’t explain it. It is just something that happens to me. I hear a voice and it will get stuck in my head and start talking to me is the best way to put it. That is why sometimes songs get their go around in my head and I can’t stop it unless I take medication. I had this one voice last summer that just wanted to talk to me at night, just before sleeping. And boy, was she demanding. I would nod off and she would get all offended. And the more sleepy I was, the more she would ask questions! So annoying! I am glad she is gone and hope she doesn’t come back!

I have to get dressed up tomorrow. I hate getting dressed up. I don’t have clothes that fit me anymore except for one pair of pants. And it is going to be cold so I have to wear a long sleeved shirt, which because I gained weight, I have only one that fits. If I didn’t have breasts, I would be fine. Things would fit nicely. Pisses me off that I have them. But then I will never be a “guy”. Just in my head I will be one. To the rest of the world I am a FEMALE, like it says on my medicare card I got the other day. How degrading. I could have killed myself over it. But I guess I am getting better at living this double life, even if it is painful. I recently heard that Facebook has changed gender roles. I wonder what that is about. I haven’t looked at it because in my mind you are either a female or a male. I am a male, but in a female’s body. So, yea, I kind of get the confusion. UGH. This sucks. If only we were to choose what we wanted to be at the age of five none of this identity confusion would exist. Just because you are born one way doesn’t mean you are truly that way. Now I feel suicidal because I hate myself so much. I can’t stand myself. I am despicable.

flashbacks and memory lane

by Midnight Demon, posted in cauda equina syndrome, CES, depression, medical, psychosis

Yesterday’s blog still has me reeling. For some reason I still feel like the world’s biggest jerk and I don’t know why. I think it just could be the depression coupled in with the voices. I keep on getting psychotic breaks despite being on medication but this week is my anniversary of my first CES diagnosis. Last night I was having flashbacks. Every time I closed my eyes, I was in a hospital bed. Being in pain last night didn’t help. I am trying to cope with this but it is just so hard to deal with all the time because CES affects everything I do. It’s like no matter what, there is a reminder. Like yesterday I was drinking fluids because my urine has been dark the last couple of days, indicating I was dehydrated. Well, I drank and drank only to leak and leak. Then I had to have a number two and almost didn’t make it to the bathroom in time. People think that I am doing fine because I am not walking around with my walker anymore but I am not. I still have nerve damage to sensitive areas, areas that are not part of the normal conversation. Sure we can talk about walking and standing and shit like that, but we hardly ever talk about bathroom stuff. Only a few friends and family members know that I have this problem. Granted it is not as severe as some one else with CES but that doesn’t mean I have CES any less.

The depression I know will fade one of these days, maybe when baseball returns next month. I just know I am stressed out over this book. I am reading it and wondering if I can truly put out the dirty laundry more so than my blog, because once it is out there, I can’t take it back. Having the flashbacks last night made me realize that I still am never going to get over this. Every year there is some reminder and today my scar is itching. I remember after surgery how nasty it felt to move the muscles around because they weren’t together anymore. I remember not feeling “whole” anymore because I had stitches in my back and pieces of disc taken out of me. You never know what that is like until you go through it. Sure people have surgery all the time to take the bad stuff out of them that is causing them disease but they hardly have to face it again and again. And I got CES twice. Lucky me. I have had four back surgeries. The first two was done thirteen years ago. The first was to remove the disc that was causing my legs not to move properly. The second was to remove the infection that happened two weeks later. I had a nice staph infection and had to be on strong antibiotics. These antibiotics almost killed my kidneys and liver. I went into kidney failure and they weren’t sure if I needed dialysis or not. It was a wait and see game. Luckily, after they stopped one of the antibiotics, my kidney function tests came down, albeit slowly. It took almost two months for me to have normal kidney function tests after I stopped the antibiotics. I also was very weak as my blood count got really low. To say that I was anemic would be an understatement. I was told I might need a transfusion if my count got any lower. I didn’t want a transfusion as I always heard stories about things that happen, like a transfusion reaction where you reject the blood you are given. I was scared. And I was alone. It took a few nurses and several family members just to get me to consent to the second surgery. I wanted the infection to kill me. But I am glad I got it because the pus pocket was close to bursting and if the stuff got on my nerves, I would really be in bad shape.

Memories such as these keep popping into my mind. I can remember stuff like this but yet I can’t remember if I had breakfast or not. The brain is a funny thing. I guess it just remembers what it wants to. I just wish it would happen during the day and not at night when I want to sleep! But the depression remembers these things. I know that if I was in a better mind set back then, I probably would have been over this a long time ago. But it’s important to tell people that those with back pain can get CES if they are not careful. All it takes is a herniated disc to rupture and boom, you will have this dreaded condition. I just hope that if this happens to you, you get the care you need within 24-48 hours after onset. Or things might be permanent. I was lucky that my CES diagnosis was caught early to reverse the nerve damage that was preventing me from walking. I can walk without a limp but I still need an AFO (ankle foot orthotic) because my foot is still weak, even after all this time. And no matter how many times I have been to physical therapy and there have been quite a lot, I still can’t regain the strength I lost. I am at 90% recovery. The bladder and bowels were after effects. And most likely caused by the second surgery/diagnosis that was at a different level. That happened five years after my first. I was a lot calmer about the second go round than I was the first. What truly helped me was finding a support group (www.caudaequina.org). Knowing that I wasn’t alone and knowing what to expect truly helped me recover and keep my spirits up.

letters

by Midnight Demon, posted in blogging, depression

I just finished writing my therapist a letter. I have been writing her a letter since we began therapy. It’s a way to express myself and share my thought process about how I feel about things. She was commenting the other day as she told me that I am the only person that writes her anymore. Well if she had fricken email, I would email her, and more often. But she is not into technology so doesn’t do email. I even created her an email account but she doesn’t use it.

Today I babysat my niece for most of the day, which frustrated me. I wanted to work on my book but was too tired to bring it down with me. I was so sleepy. I know I should have made a cup of coffee but I was afraid of the jitters as I haven’t had coffee in a couple of days. My sister didn’t have tea and I didn’t feel like going up and down the stairs to my apartment. I hurt my ankle while reaching for a dish so that made me really stay at my sister’s apartment. My ankle still hurts if I move it the “wrong” way.

So I didn’t work on my book today. I really wanted to but I hate it when my routine gets interrupted. I was looking over the chapters and realized I have quite a lot. I think the book is going to be over 300 pages when it goes to print. I have never written anything that long before, but then the book is over 50,000 words. I hope this editor works out for me. I will be giving her my last payment at the end of the month. Then I think I will start saving some money. I really want to travel next year. My cousin is always asking me when I will be visiting him again and my friend in Texas always wants me to visit her. I am hoping with the sales of my book, I will be able to do this.

I didn’t do too much after I babysat. I tried to take a nap and think I succeeded. I had a weird dream about Taylor Swift. Don’t remember too much about it but I just know I dreamed about her. I don’t know why I have been having these weird dreams lately. My medication hasn’t changed so I am just left with these weird dreams that have no meaning or don’t make sense. I guess I could write my therapist another letter about the dream but sometimes I like to keep my dreams private.

My cuts that I made a week or so ago have healed. I can now wear short sleeved shirts again. I don’t even have a scar from the scratches I made. I am kind of disappointed.

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.