I had a long day. I thought I had an appointment with my neuro but apparently due to major miscommunications, it was yesterday, not today. I went there for nothing. No matter because I am cancelling the appointment on Monday. I am not going to miss an appointment with my therapist because of an incompetent office staff. I even called to confirm that I had an appointment today was told I did. I am beyond pissed and this isn’t the first time this has happened.
I started writing about the darkness and then got so aggravated I couldn’t think of what I wanted to write other than what an asshole staff my neurologist has. I will work on it this weekend. I am still in a bleak mood and as long as that doesn’t change, I think I will be fine for writing more on it.
In my frustration, I emailed my editor and blasted her with an ultimatum, either work on my stuff or I want a refund. She said that she will be working on my stuff this weekend. I hope so. I had to wait so damn long and she better be pristine. Or I am going to be more pissed than what I am right now. If we work this weekend, I can still get this hopefully printed by the second week in April. I won’t be able to have copies of it for the AAS conference but that is ok. I didn’t think production would happen anyways for that. Looks like I can’t back out of it now.
Last night I had some hallucinations that were not fun. Ever since my cousin told me about pink slime, I have been having paranoia about eating hamburger meat. Last night I was hungry as I skipped lunch and I bought hamburger patties. The voices got so insistent that I was going to die from eating this burger it took the enjoyment of eating a burger away. I still am having the same voice telling me there is pink slime everywhere. I am trying to ignore it but this voice is one of the annoying kind. I have to take some trilafon to make it go away. Or I am not going to be able to eat anything, even if I make it. Even as I was eating my burrito today, the voices were calling the guacamole pink slime. I was getting disgusted so only hate half of the burrito. Now I don’t know why these voices have crept up. I know I am a little stressed with my book and all. And today was a real annoying day. My cousin kept on calling me three fucking times just to bust my balls. I kept telling him I was annoyed and didn’t feel like talking but he kept on calling. And no use trying to just have him talk to voicemail because he will start calling my mother’s phone and bother her. I kid you not. He is the literal meaning of pain in the ass.
I cried today because I was so upset with my neurologist’s office staff. I know I am going to get charged for missing the appointment but I am NOT going to pay it as they gave me the wrong information. Plus no one called to confirm the appointment and they usually do, 48 hours before the appointment. So they can just stuff the payment up their *****.
I am relieved the editor got back to me and will start working on my book tomorrow. I was really starting to think she took off with my money. Now I can relax a little bit, least until the edits come in, LOL
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.
Ankle Chronicles 5
I overdid things today, big time. My foot has been throbbing since I came home at two. I knew after I went downstairs to get the mail it would be the last trip I would make for the day as my ankle just said a big fuck you. I am feeling out of sorts and just maybe going a little nuts as I keep thinking my foot is talking to me. It is really angry at me and I keep wondering why the hell didn’t I sit down more today while waiting for the stupid bus. I had a half hour to kill. I was bored. So I walked to the meat market thinking I would get some steak tips for dinner but they were really expensive. It’s just my mother and I. I don’t need like fifteen pounds of tips. That was all they had and they were like twenty bucks. I suppose I could have frozen them now that I think about it. But I knew I would forget about them and I would be the only one to eat them as my mother doesn’t like steak anymore.
I have been writing in my journal about how angry my foot is at me and I keep thinking why. I know it is because I stood for a long time, but I am wondering why I had to have nerve damage in this foot. Compared to my right, it’s like it is louder than my right. I hardly notice that I feel my foot. My left is constantly screaming hello, I am here!! But that is it. I can’t talk back to it. I can’t tell it to shut up. I can’t tell it to go shove off. At times, I feel like it isn’t my own, that it belongs to someone else. I am not feeling that way now. I just want it to stop throbbing and burning. From my ankle bone down to my toes is a constant, heated throb. And I don’t mean heated as in upset. I mean heat as in hot fire. My ankle and foot feel like it is on fire. It’s not, I can assure you but it just feels like it is. I so want to take some Neurontin tonight and I might. Now the stabbing pains start. Someone is stabbing me with a knife in between the bones on the top of my foot. I can’t breath. The pain is really bad. I can’t move my toes anymore and that has set off some PTSD symptoms for me so I am in a hypervigilant state. I need to take some Ativan to calm me down. I would take some more pain meds but it’s too early. I just took my last dose about three hours ago. I am supposed to take the pills every six hours. I might be passed out from the pain but that is unlikely to happen with my anxiety being high. I have been listening to Mary Chapin Carpenter the past few hours to try and keep my mood even keel. I need to take something but I don’t know what to take. I am so distraught and the hopelessness has started to fill my soul. I need sleep. I need something to distract me from this pain.
I remember what my life was like before pain hit me. I was an active person. I was working. Now I have just become this hobbled person. I just can’t stand it. Every night it is the same thing. Every day I have to put my foot out of the blankets only to put them back in a little while later. No matter what I do there is no pleasing it anymore. I can’t even ice it because it just makes it very cold and screws up the nerve pain even more. I wish it was a clear case of CRPS but no, it’s got to be half a fricken case. A mild case. Or maybe not a case at all. Maybe this pain is all in my fricken head and I am crazy. I just know that I want to stop hurting. I want to be able to do stuff for more than a few minutes. I want to be able to walk without restraint. But that isn’t going to happen anymore. Hasn’t happen in three years and every time I push myself to go farther, it always backfires. Which sucks because the depression is lifting and I have all kinds of energy but no place to put it. I feel like such an imbecile.
Fuck it, I am taking my meds early. To hell with the consequences. I am in deep and serious pain that is driving me fucking nuts and I don’t care anymore.
This is a bitch blog. I have been up since nine this morning in pain. And here it is ten in the evening and I am still in the same amount of pain I was this morning. I have not had a day like today in a very long time. I find it distressing though. The pain is a 7 out of 10. I can stand it but it is annoying the crap out of me. It is a constant throb that just bugs the crap out of you.
I have tried taking my pain meds and it brings it down to a three so I do get some relief but I shouldn’t be having this much pain for doing nothing. Granted I was on my feet the whole while my mother was being attended to by the paramedics. I couldn’t bring myself to sit nor did I think to sit. So I know I am going to pay the price sometime tomorrow, if this pain settles down.
I am so tired of being in pain every day. It sucks. I can’t stand when my foot gets cold all of a sudden and I have to go around the house with one sock on because I have to warm it up. Then when it gets warmed up, it REALLY gets warmed up. My foot then is on fire that I can’t extinguish.
I really hated that I had to miss a therapy session today because of my mother. I really wanted a check in later, just to vent a little of the scariness but my therapist wasn’t available. I talk to her tomorrow so it is not a huge deal. I just hope that she allows me a free pass because it was a medical emergency. I couldn’t just sneak away while my house was full of emergency personnel. One of the policemen that came to my house was a former co-worker of mine from Somerville Lumber. It was good seeing him, though I wish it was under different circumstances.
I still can’t believe my mother had a hypoglycemic attack right under my nose. I should have known that her falling was trouble. I just hope that she isn’t too sore tomorrow. I know her arms are going to be sore because she was trying to pull herself up pretty hard but no luck. Her legs hurt more than mine do. But I couldn’t pull her up because I have a bad back and weakness in my legs. I had no choice but to call for help.
I think today was the first day that suicide wasn’t on my mind. But I have been writing about it so I guess it has been. I just feel like now I can’t go through with my plans because someone has to be with my mother all the time. If I wasn’t home or here, my mother would probably have died by the time my sister came home from work because no one would be able to call her and reach her. I just don’t know anymore. I hate being the responsible one all the time.
I am getting sleepy from my meds but pain is still keeping me up. My foot is just throbbing so bad. It feels like someone is trying to take a bite out of my foot with a vise. I hate this feeling. It is awful. I wish that the cream my doctor prescribed for this type of pain actually worked but it does not. It causes more burning sensation on my foot than the nerve pain ever caused. I have stopped using it for this reason. It is such a waste of money.
You must be logged in to post a comment.