Category: CES

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.

hospitalizations

by Midnight Demon, posted in blogging, CES, chronic physical pain, depression

Feeling a little bit better today, not as gloomy. I still feel depressed however. I just can’t seem to get away from it. I wish the highs would return. I miss them.

I am the worst grilled cheese maker in the world. I tried, again to make one and burned one side while didn’t cook the other enough so it was soggy with butter. Or maybe I just put too much butter. I don’t know but I suck at making this meal. I even burned my gums because the cheese was hot. OUCH. I don’t think I will be making anymore grilled cheese any time soon. I’ll just have my mother make them! LOL

I am close to making a milestone with my blog. I got another 30 or so views to go before reaching 10K. If I do this before Thursday, I would be happy, least for a little bit. Thursday marks the one year anniversary for my blog. I am kind of excited that I will have 10K. I have been giving updates on my facebook page with the countdown and also with my Midnightdemons facebook page. I even got to reading my own blog because as I have said before, I don’t always remember what I write. Even when naming a blog I have to go through the search to see if I named a blog this already. I have over 300 blogs to far so it is hard to remember sometimes what I write.

Right now, I am working on another paper for Cauda Equina Syndrome (CES). I have noticed that a lot of people find my blog using search terms for CES. I think it would be a great idea if I had a fact sheet or something to tell beginners about this or those that have been newly diagnosed. It can be very terrifying to get this diagnosis and sometimes people just don’t get the care that they need or worse, don’t get diagnosed at all. I won’t go into specifics about the condition but if you are reading this and want to know more, go to http://www.caudaequina.org to learn more about this devastating condition. I have been living with this for twelve years and through my support group, have learned to live with it better.

Today I am supposed to go out with a friend to the movies. He is an eye doctor and works where as I am disabled and don’t work. The last few times he has paid for the movie tickets and I just got the popcorn (which can sometimes be as much as getting the tickets!) But this time I am short on funds. I have just enough just to get my Ativan prescription filled and then that is it for the next week and a half. I will be totally broke. I find it totally humiliating that I am again without cash funds for the third month in a row. I have tried budgeting this time and it didn’t work. When my check comes in, I have bills to pay and food to get. There usually isn’t a lot left over. I might have to cut my Starbucks fund but then I NEED my coffee and need to get out of the house so I can’t really cut my fix. The whole money thing is depressing me. I wish I was still collecting the long term disability but I owe them because I didn’t know you can’t collect SSD and LTD at the same time. So the money I was supposed to get, they are taking until my balance is cut off. Which will be in about twenty months from now, in which time, I probably will be off it. I don’t know what I am going to do then as there is no way I can afford to pay them with my SSD. I guess by then I can start working part time somewhere and have a little extra but I can’t do that now, especially when I am having splits and psychotic symptoms.

I have my meeting with my therapist tomorrow. I am kind of glad I do. I just am having a rough weekend. Thoughts of killing myself are still in the back of my mind and I so want to go through with it. I am just so tired of fighting with myself every day on trying to keep myself from going through with it, tired of putting on a “happy” face so my family doesn’t know I am depressed. Just so tired in general. I know I probably should be in the hospital but they will just kick me out in a few days if not two weeks. It’s really hard to stay past that length of time. The insurance just doesn’t want to pay. I get letters from my insurance (while in the hospital) that “Dr. so and so thinks you should be discharged but if you feel like this is wrong and need further care, talk to your attending doctor for an extension.” I’m like, really?? I am in the hospital and you send these to MY HOME. How am I supposed to refute what you are writing. Though my favorite is when these letters arrive AFTER discharge!! It is comical though not really. Not like I want to really stay in the hospital but I think some time there is beneficial. I don’t have to put up a façade every day like I do when I am home. I can sleep most of the day without it being too disruptive. But I would be lost if I didn’t have my games and my cell phone with me. I guess that is why I fear going in the hospital. I don’t want to lose access to my phone. I would hate not having music because I don’t have a separate MP3 player. It is my phone. I would be so lost without listening to music while in the hospital it wouldn’t be funny. And then trying to have a check in with my therapist would be impossible. I have had that happen to me one hospitalization where I couldn’t get a hold of my therapist and my therapist couldn’t get a hold of me because the floor phone was busy. I hated that. And the only reason they deny you using your phone is because it can take pictures. Like really? I am going to take picture of this place or a fellow inmate? For what? I am not the idiot that has to post 90 thousand pictures on Facebook or twitter or Instagram every single day. I use my phone for its use and for checking email. Sure I will be on twitter and Facebook but it will just be on MY status updates and not someone else’s. I won’t say that John smith is having a bad day and took a nutty and had to be restrained. That is not my place to. Though I did have one hospitalization that a patient actually kicked down the metal door of the unit. That was scary. He was a BIG dude. I was scared of him. He was kept mostly sedated for that reason after that. He was also psychotic. But now that I am thinking about it, so was I. He kept talking on his ipod thingy or maybe it was his phone, I don’t know. But only he was allowed to use it and the rest of us wasn’t. Totally not fair!!

So I guess that is why I am resistant to going in the hospital. I won’t have my cell phone to listen to music and make calls, check emails, and play my games. Seems right to me!

games and suicidal thinking

by Midnight Demon, posted in blogging, CES, Chronic pain, chronic physical pain, mood disorders, suicide, suicide attempt

Woke up feeling energetic today but after my therapy appointment, my throat was hurting from talking for an hour and I lost my zip. I took a shower, brushed my teeth, and then went back to bed, though I didn’t sleep. I just kind of played on the computer. I am still playing Pioneer Trail, though I don’t know why. I think only about 10 of my 150 neighbors are still playing, which makes it difficult to get things for your homestead. I am also playing the dreaded Candy Crush saga. I had to see what the hype was about and wish I never did. I started playing on my phone then moved on to the computer. HUGE MISTAKE! So after I am bored with twitter and checking status updates on Facebook, I will be playing candy games. One thing I HATE about playing it on my phone is the dreadful music. It sounds like a funeral march or something. I have to turn the sound off to avoid it but then when I play my MP3s and no sound comes on I am like WTF till I remember that the sound is off.

I read my therapist my last blog entry. I think I really have a bozo for a therapist. She didn’t get the point of the blog. Think we spent like 5-10 minutes talking about it and then she wanted me to write a blog about constriction. I was like, where did that come from. She really thinks that I am in this blinders thinking about my plan. I know I am, that is why I am planning on killing myself! DUH! You don’t have to tell me I am suicidal when I am planning on killing myself. I can’t seem to be able to talk myself out of it. I am going to be true to my word this time around. How can I not be? I am tired of being in pain. I am tired of fighting everyday. I am tired of struggling. Why should I continue my lousy existence?

I tried again with my psychiatrist to get an appointment though I am feeling what is the use? Not like she has some radical new drug for me to try to help this ache I feel inside. I doubt a pill would help cure me of my suicidal tendencies. My therapist has threatened to tell her what is going on with me but has not. I can’t bear to tell her for fear of her throwing me back in the hospital and it’s not like the hospital is going to do anything for me except piss me off, and screw up my pain meds.

I see my primary tomorrow. I hope that he can do something about this throat pain that has been bothering for almost two weeks now. Every time I think I am getting better it flares up again. I still have a cough that likes to kick up every now and again. My sides are killing me from it. It is annoying. I am kind of thinking I will be placed on antibiotics but I am hoping not as I hate taking them.

My writing friend is in England right now. She will be there for a week. She said to write emails to her about my writing progress but I kind of don’t want to. It’s not that I have to or anything. I don’t think she is going to respond as she doesn’t have internet connection up there. I guess she is in the countryside of England so why bother when I know I won’t be getting a response. Much like my psychiatrist that doesn’t respond even with all her gadgets. I get frustrated with her when she doesn’t return emails, in a reasonable amount of time, like a day or two. I know she is busy and might not get the email right away but come on, it has been almost a week since I last emailed her and still NOTHING. So I sent her another email today asking for an appointment. I still have not heard anything. FRUSTRATING!

So maybe I will write a blog about constriction over the weekend. Not like my therapist is going to read it anyways…