Tag: CRPS

tired of living

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, psychache, suicide, suicide attempt, transgender

I am feeling blah today. I just finished taking a shower and though I feel refreshed, I don’t have any motivation to do anything. I have some time to get my coffee before my therapy appointment in a couple of hours but I just don’t feel like being rushed. Every time I do, I forget something, and usually the essentials, such as the keys to my house!

I responded to an email for my CESSG (Cauda Equina Syndrome Support Group) about physical therapy. I hope that the person doesn’t see a chiropractor. That is how all of my problems started. I think that if I was given adequate pain medication in the beginning of my back pain, I would not have gone to see a chiropractor or if I had stopped once the pain did I would not have ended up with CES. All the ifs that go through my mind, looking back.

I am especially feeling out of sorts today because I still have my fricken, goddamned menses. Just when I thought I was getting over it, it comes back in full force. I seriously am suicidal more so now than I was before. I just can’t take being a woman anymore. I have tried to stop the cycle and I am failing horribly. I am so sad. I hate being in this body. I never am going to be a man. And though I should be possibly reaching out for help, I just can’t. I just can’t bear talking about it with someone because I know I will just start bawling like a baby. Just writing about it is bringing tears to my eyes. It just is a deep emotional reaction. And even though I know there are other FTMs out there, I still feel alone. I just can’t cope with this anymore. I doubt that anyone really knows the frustration of dealing with this. I am trying to cope with it but how do you cope with something you know is WRONG?? I know I should probably go back to my reproductive endocrine doc and be like this isn’t working but why bother? She has been trying to stop this beast and has been unable to do so this past year. My confidence in her is down to nothing. I know I probably should go to the experts and see what they know but this Doc is the tops in her field. I don’t understand how hard it is to stop a fucking period. It just doesn’t make sense to me. And with every mense that I get, the closer I get to killing myself. I am done with it. I just want to die. I am in too much pain anyways. My foot was acting up soon as I woke up this morning. It’s sort of fine now as I took my pain meds.

I just am tired of living. Tired of trying to make sense of all this. I really don’t know what to do about my menses anymore. I wish it was easy to get through this but it’s not. Every time I wipe myself and there is blood I freak out. I just don’t understand why I am still bleeding. It’s been two weeks already. This is my third week. I was hoping it was getting less toward the end of the week but I was wrong. I really hate being like this. I hate feeling like a freak. And nobody understands that I am going to end my life because of it. I wish I knew what I was feeling but all I feel is hurt. I feel pain. I feel hate. Hate that I am not who my brain thinks I am. And I get weaker. I get more tired with each passing day. It just takes so much energy to deal with this. To wear underwear now that are made for females is just killing me inside. I might be called a masculine name but I am far from being it.

A Pain night, YAY! NOT

by Midnight Demon, posted in blogging, CES

dermatome

I have been having some weird pain in my left hip the past couple of days. If it was a one time deal, I wouldn’t be worried about it. But every time I sleep on my right side, my left hip goes berserk. It’s like getting zapped with an electric prod of some type. I never have had nerve pain like that so tonight I decided to look up the dermatome map to see what nerve pathway could be causing this. It is the L3 nerve. Just great. It’s the section I had surgery on almost seven years ago. I am really nervous now. But I know the first thing the doc is going to say is lose weight, which I have been trying to. I have been eating cereal rather than making something else to eat, like a fried egg. Course that is the only thing I do know how to make. I can’t make something fancy like poached eggs because I usually end up making it a hard boiled egg. Or egg drop soup. I usually have my mother make it for me if I am in the mood for it.

SO I have this new weird pain that may or may not mean anything. I am not having any weakness but my foot is wicked hurting me for the past few night really bad. This is despite me not doing anything and I don’t know if it is the position I am sitting in that is causing it to feel this way or what. I just know that when I lie down, all hell breaks loose. It’s like sitting up is the only way for my body not to hurt. Trouble is, I CAN’T SLEEP SITTING UP!!

I was going through my legal pad of paper today as there is a lot that I have rolled back and came across my letter to my psychiatrist about ending my life. There was soo much more I wanted to put in it but I think what I wrote is to the point and says what I need it to say. It is a really sad letter. I feel like bringing it to her at my next appointment, but at the same time I don’t think it will be a good idea as she might hospitalize me. I still am thinking about ending my life but a week later, the 23rd of Aug when I turn 37 yrs 8 mths old. It just some how works out in my head that way. I really want to stick around to see if the Red Sox make it to the play offs. I think they will but I am not sure. The bullpen has not been really strong but the new addition of Peavy is fun to watch. He likes to talk to himself on the mound. It’s like watching Dennis Eckersley on the mound. And he is a good pitcher, just like Eck.

I just feel like I have to do something to try and make my life better and killing myself is the only option I have. I don’t want to be anymore. I am so tired of fighting myself all the time. Of fighting to deal with this pain every fricken day. It is so tiring an no one knows except my fellow CES friends and bloggers. I can’t tell my family because they just say go to the doctors. The doctors don’t have any answers for me anymore. And I am scared to death that this new pain policy is going to be the death of me anyways. Might as well kill myself now and get it over with. I am sick of fighting for my pain meds. My one relief I can count on is a couple of pills a day, sometimes more. But lately I don’t feel like I deserve it. I feel like I should be in pain because I am a bad person so I wait until the pain is a 10 before I pop a pill. No one has told me otherwise. No one has cared enough to tell me when I should and shouldn’t take my pain meds except the voices. They know how I should take my meds and when I need it sometimes before I do. They sometimes are helpful but lately they really want me to OD on them in ways that I don’t like. I rather take a bottle of Tylenol than OD on my meds. And besides, it isn’t going to kill me. It might make me sick but that is all. I would need at least a three month supply of meds to kill myself and I don’t have it, nor can I stock up on it because that would mean not taking my meds and I NEED relief more than I need a method of killing myself.

I don’t know if I mean that I will kill myself. I know some day I will do it but I don’t follow through on my taking off or planning dates. The 17th will be here before I know it. But I just found out it is my friend’s birthday so I can’t do it on that day. I don’t think it would be right. It would so be a slap in the face. But that is not the person I am. I hate being in pain tonight. I don’t know how much meds I will take to make myself go to sleep. I still have a bottle of Neurontin I can take but I doubt it will do anything but zone me out.

midnight demon post

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, depression, mental disorders, mood disorders, suicide

I have been up since 0900. it is now 0300 as I write this. My foot started really hurting at 0200, just when I was about to really get into some sleep. I took my meds just now as it has been a while and a muscle relaxer to try and see if I can sleep. I am just miserable because I have not been able to get a good night’s sleep in two days now. I hope that when I do fall asleep I really sleep.

I emailed my psychiatrist. My therapist is on vacation and there is no way I can talk to her for a check in so I emailed my pdoc. She is good about my emails. I don’t get any responses usually. So I just write what I feel and ship it off to her. I told her my suicidal thoughts have increased because of the pain, having my menses, and lack of sleep. I am thinking of taking rat poison. It’s a good thing I don’t have any on hand. It will take me some time to get it though as I don’t think mice poison will work as well. I will have to do some calculations to get the dose right and I hate math. I used to be good in math until I met Calculus. I sucked at it until my last term in high school. Now I can’t even do basic algebra. I forgot how to do it. good thing there is Google…

I really was having a good day today. Now it is spoiled by pain. I wish I did something to cause the pain but I didn’t. I was just laying in bed for the past few hours trying to get to sleep and playing on my laptop or checking twitter on my phone. I find that I can do stuff on twitter with my phone better than using the web. The phone has features that you don’t have on the web, which is strange. But then, I don’t design these things.

On a sad note, I found out Eileen Brennan passed away and my rookie shortstop for the Sox has been traded to the Tigers. I am deeply saddened by this. I loved Eileen and Iggy. Tonight Iggy made a base running error that was comical. I wish I could post it here but it’s against WordPress and probably MLB policy rights. If you Youtube Jose Iglesias and base running, I am sure there is a clip of it. Or not. I just checked and it’s not there. 😦

I liked watching Iggy play. I think he is a superb player. He has quick hands and a good bat. I am definitely not looking forward to seeing him in a Tigers uniform.

Eileen Brennan I will always remember her in Private Benjamin. I loved watching her there. I know she has played in other shows since then but her performance in Benjamin was hysterical, to me anyways.

So my demons are out and I have to live with them tonight because I am getting not respite from my relief medication. This totally sucks donkey balls. It’s also freezing in my room because I have the AC on. I am covered with my sheet and comforter. I am too lazy to shut off the ac because I know I will have to turn it back on in a few hours when my room gets hot again. Nothing worse than being woken up because you are hot. Maybe that is why I didn’t get any good sleep. My room was too warm, even though I have the ceiling fan running at high.

So these are my thoughts when I am in a bad place. This is why I call them the midnight demons. Because they are demons. they are the dark thoughts that no one wants to hear ever. I was talking to my cousin tonight about my pain and he gave me credit for handling it. I didn’t tell him it makes me want to commit suicide. I did tell him that if my PCP ever stops giving me my pain medication, he might as well sign my death certificate. There is no way that I can live without my pain meds. I am not saying I am addicted to them, because there are days where all I will need is one pill or no pills for a day or so. Then there are days like tonight that I need 4-6 pills to control my pain. I don’t take all of the 4-6 at once. Just 2 every 4-6 hours. In my desperate hours, I have taken 3-4 at once, when I am in a FUCK it mode. I thought about taking that tonight but decided against it. I really am scared about how the new policy my doc’s office has it going to affect me. I am hoping there is no radical change. I won’t be able to handle it. According to this new policy, I will only get a 28 day supply of meds and will need to be seen every month to get it refilled. It’s a standard policy that I have come across from the pain management docs that I have seen. the thing that scares me is that there is a clause that states that if my provider doesn’t see that i am getting better or that there is no change, he might decide to discontinue the medication. I have a condition that is not likely to improve at ALL. If I don’t take this medication, I am screwed. I will be in pain and will likely commit suicide because it will be the only option I have left. I cannot go on suffering like this. I just can’t. I have exhausted all possibilities that this will get better, no amount of physical therapy or other treatments are available to me. I know losing weight is a big thing. And I am trying to work on that but it is not easy. I love to eat which is part of my problem. Even now I am fighting the urge to have a bowl of cereal. But that will mean going down stairs to my kitchen and I don’t think going down stairs will help my pain.

It’s been an hour and a half that I have had this flare up and it doesn’t seem to show any signs of calming down. How I wish I could see my doc right now and tell him how badly I hurt. But my doc is not available at this hour, except for emergency docs which will be the on call doc who might not be mine and won’t know me from Adam. And even if I do page him, there is no guarantee that he or she will provide me with adequate relief at this hour, other than telling me to go to the ER. I hate this bullshit where I am in pain and there is nothing I can do about it other than pray my pain meds work or at least knock me out.

This is what I go through on a daily basis. Why I have not attempted to kill myself is a mystery to me. I have thought about it a thousand and one times and still have not made any attempt to kill myself in the past year and a half. I want to so bad though. I think it will provide me some relief that I am seeking. But if I am successful, then I will be ok. My family might be destroyed but I will be in a better place, I hope, where there is no suffering like this.

Night blog

by Midnight Demon, posted in Chronic pain, chronic physical pain, mental disorders, mood disorders, suicide attempt, writing

this is the first time that I am writing a third blog in a day. I am sorry for the posts but I am in so much pain I don’t know what else to do. I can’t say that I did too much because I didn’t. I just know that my foot is on fire and there is nothing I can do to stop it. I have taken meds to quiet things down and I am hoping with the Ativan I can get some sleep in a little while.

I actually am afraid of sleeping for fear of having that weird dream again. Or another one. I also don’t know why I had an anxiety attack on the bus again. I guess it is getting to be paranoia that I won’t be able to get off the bus at my stop because I don’t want to fall down. My balance on my right foot has been off the past several months, especially when I am turning. I seem to lose my footing because I don’t know where my foot is. It is so frustrating that when I am seen by people it looks like I am drunk.

I got so upset about my menses after my last bathroom break I needed to talk to someone. I just can’t handle this menses situation anymore. I am now bleeding more than I did last week, which technically, I should be bleeding less not more at this stage of the game. I am not a reproductive expert but I know when a period should end. and after seven fucking days, it should be OVER. I should not be continuing to bleed dammit. I am sorry if this sounds gross or disgusting but it is how I feel. I am so upset by this. I am supposed to wear boxers not pads all the time. I am supposed to be a male and because I am not in the right body, this shit happens and I am distressed about it. I was texting to a friend tonight and as I was, I was also writing to my therapist about hanging myself. that is me, I am splitting tonight. In one instant I am texting about marinara sauce and in my writing I am writing about the length of rope I should use.

I should be sleeping because I took some neurontin. But the stuff has not kicked in yet. I also just took my pain meds and some ativan but I am still fucking hyper and in pain. I bet the pain is going to go away first and then the ativan will kick in to put me to sleep. I just hope I don’t wake up at four in the morning again. that is what has caused all this bullshit. I am not sleeping at all through the night. I can’t remember a night where I slept past eight in the morning. It pisses me off. I think I should be up all night and then just sleep during the day. But then my mother thinks that I sleep too much. How can I sleep too much if I am not sleeping during “normal” sleeping hours??

I finished my Lincoln book that I was reading. I just have to read the Epilogue. but I really kind of don’t want to. I like the book because at the end it gives the same speech in the end as in the Lincoln movie. Maybe I should watch that tomorrow. I have not watched it in a while.

God this pain is unreal. It feels like someone is trying to shove a hot poker through my foot. I know it is nerve pain but I usually don’t get the hot poker feeling so I am not sure what that is about. I hope that my CRPS is not getting worse than what it is. I have been getting “hot flashes” in my foot the past several days now. My foot just feels really hot but when you touch it is cool. I don’t know what is going on. I am scared that the nerve damage is spreading or that I somehow twisted my good part of my ankle and now it is sore. I won’t know for a few weeks because that is when I see my PCP. By then, the pain could be gone and I would look like a fool. Either that or the pain will change to something else. I have had so much different types of pain in my foot I think my doc thinks I am making it up just so that I can get pain meds. I swear I am not. It’s just that the worse part of the pain happens at night and not during the day. Though this type of pain, the hot poker, seems to be happening more during the day and then gets worse at night.

Because of this I am constantly thinking of ways to end my life. The problem is that I don’t want my nieces to find my body. And so I can’t kill myself at home. I wish I could just chop my foot off right now. It is so killing me. I know I am not alone with my thinking of killing myself because I am depressed and in pain. That some how comforts me but at the same time it doesn’t. I know that I can’t beat this diagnosis. the pain changes too much for anyone to really believe me. how can they when one day I say that it is a hot poker and another time I say that it is like a barbed wire going though my ankle? or that my foot explodes in pain and I can’t move my last three toes. This doesn’t happen during the day. it only happens at night so when my doc examines me, I am not hurting. I don’t get the exploding pain, the hot poker, the barbed wire. It is SOOOOOO frustrating!!!! I don’t know if my doc believes me. I know my psychiatrist does and my physiatrist does. but I don’t know if my PCP does.

This is what I think about at night, when I can’t sleep. This is why my blog is called the midnight demons because that is truly when the demons come out, either mentally or physically. it truly sucks!