Category: cauda equina syndrome

Football, Pain, and Social Media

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

Tomorrow I have a mess of phone calls to make and I need to get to the physical therapy (PT) appointment in the morning. I am really nervous about getting there and also just in general. I hope the guy is a good guy and not a shmuck. I have never been to this health center before so it will really be a test of my navigation to find the place. I will be going by public transportation and according to the T’s website, it is a block from the bus stop. I just hope it isn’t more than that as I might not be able to make it. I was talking to a friend that used to live in the area and she said there is a hill to go up. I don’t do well on walking uphill. I guess I will find out how steep it is when I get there tomorrow. Got to love Boston and its surrounding areas for being hilly.

Pain wise, I am hurting. I have decided that I won’t take any pain medication unless it become unbearable. I have no choice as my pain pill supply is on its last leg. I cannot refill my script until Tuesday and I have just four pills left. So as much as I really would love to take a pain pill right now, I can’t. This sucks so bad. If my doc would listen to me and actually give me the amount of pills I am taking a day, there wouldn’t be a problem. But he doesn’t so I get screwed.

My mood has been stable despite being in chronic pain the last few days. I haven’t been despondent and in despair. I have been trying to keep myself busy with my game and working on tweeting quotes from the book, “Managing Suicidal Risk” by David Jobes. I was tweeting last night before the OSU game. What a fucking game it was last night. A nail biter till the end. I couldn’t stand the crowd last night as the noise they were making was unreal. Even though the home team was down, they still were cheering as if they were winning. Got to give them credit for that as the team came back only to lose in overtime. It was the first football game I watched all season. In between commercials I switched to the ball game. I don’t know how many times the Giants had the bases loaded and they cashed in. I didn’t see the last few innings. Last I saw they had broken the tie and were winning 7-4. The final score was 11-4 so they obviously score more runs while I was watching the overtime football game. I don’t understand how the overtime game was played as they didn’t have a time clock for the plays and then the team lost on 4th down. They couldn’t punt or score a field goal as they needed a touchdown to win. After the loss of downs, the game was over. I never seen anything like it before. Maybe that is just the way college overtime is played.

I chatted tonight in BPDChat (borderline Personality Disorder) on Twitter. It is amazing to me how many chats I have participated in with Twitter. I really like it because I get to meet interesting people with the same thoughts and understanding for the different topics that I chat in. I like the SPSM chats because they deal with suicide prevention and from there I have met some interesting clinicians that I follow and they follow me. I also get to promote my book the best I can through Twitter via hashtags. I really love Twitter and all that it has done for me. It helps me know there are real people in the world that I can converse with and not be hidden by. I am alone most of the time in my room because of my immobility. I don’t have social meetings with friends anymore and the friends that I did have, I have lost. Most of it is because I don’t have a car anymore so meeting up with them has been difficult. I also don’t socialize with my family on some days because my pain is too great to go down the stairs. So social media (FB and Twitter) has been a great support for me.

Saturday Blog 13

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

Saturday Blog 13

I am wicked sore today after all the poking and prodding the new doc did yesterday. But I persevered and went to Walgreens to pick up my prescription. I am supposed to take it only at night but I am in so much pain that I decided to try it during the day. So far, I notice no difference. I will take it tonight and I hope that with my other meds, I get to sleep. I am not sleepy at all from one dose and taking my pain meds. The new doc recommended that I wear a brace so I have that on, though I am ready to take it off because it is hurting me. I have had it on the last few hours so I need a break from it. It hasn’t been helpful for me. Going down the stairs hurts me more than going up with it on.

I think part of the reason I have not crashed is because I had coffee today. I still feel awake and like I can do anything, least mentally wise. I think I am going to write my therapist a letter when I finish this blog. I don’t know what I am going to write. But I will figure something out.

Last night I was in a rough space. The prognosis for my ankle doesn’t look good. The idea that I have to go back to physical therapy after all this time just makes me cringe. I just hope I don’t have a “god” like therapist. I want someone that is willing to work with me, not against me. I don’t know what they are going to do but we’ll see. I start therapy on Monday. I just hope I can find the place. I also hope that the therapist doesn’t treat me for a back injury like the last therapist did. I went to therapy for an obvious ankle injury not because my back was hurting yet I was given exercises for my back.

Due to this prospect, my mood took a hit. I really felt down because I know there is not really much that can be do for tendonitis other than what I have been doing. But the fact that more tendons are involved means that I am not moving my ankle correctly and I know that it is going to be painful to correct it. My stupid brother in law seems to think that I will need back surgery to correct it. He is a complete idiot when it comes to medical stuff. It really pissed me off when he said this because the damage is already done. I am trying to compensate for what I lost and that is why all my tendons are screwed up. And the thought of being in a hinged AFO forever is daunting. The fact that I have to walk with a mobile device is in itself depressing to me. And the fact that this happened almost 14 years ago kills me. I still blame myself for not getting the care I should have. I should have found someone that had experience in nerve rehab. But I was too busy trying to keep my job and stay sane so who had time for that? I didn’t know I wasn’t walking incorrectly. I was also busy fighting the pain of losing what I had and trying to gain it back. I thought, after several years, I was finally going to be okay. I was working close to full time and things were going okay until I got struck with CES again. Then all that I gained back, was lost, this time forever. But I was wiser this time around. I knew what kind of rehab I wanted to get better. And I seriously thought that after 9 months of intense physical therapy, I was better. I had no idea that I wasn’t. But I was too proud to admit that I wasn’t because I found a script from my neurologist saying to be evaluated for an AFO in 2008. If I had followed through, things might have not been as bad as they are today. And I am kicking myself big time for that. It’s my fault because I have no one else to blame.

OSU game will be on at eight on channel 5, least I hope it will. It said ABC so am hoping that is nationwide. I really would love to watch a college football game today. Nebraska killed Rutgers today, 42-24. But watching the game depends on how much pain I am in. Right now I am at an 8 and I am not doing anything but type up this blog. I have my foot up and it still hurts. I know that if I go down the stairs I will be in pain (I don’t have a TV in my room for several reasons). So right now, the game is up in the air, but I definitely will be watching out for tweets on the score and stuff on Twitter.

I’m screwed

by Midnight Demon, posted in cauda equina syndrome, depression, mood disorders

I’m screwed

I had the appointment with the physiatrist today. He was a good guy, with a sense of humor and everything. We spent more than hour going over what to do with my ankle. According to the diagnosis he gave me for physical therapy, nearly every tendon in my poor ankle is inflamed. I’m screwed. I am happy though that he didn’t recommend a steroid injection. He wants to give physical therapy and a new medicine a try. The new medicine has some risks for someone like me. He warned me that it could make my incontinence worse. Fun. I am really hurting after all the poking and prodding. Hopefully, physical therapy will help me walk correctly. I do still have to wear an AFO (ankle foot orthotic), but he is recommending that I get a hinged one so that my ankle moves more freely. But right now, I am to keep my ankle as immobile as possible. He wanted me in a cast but I wouldn’t have it. If I go out, I will use the walking boot that I have. I don’t like it because it causes my hip to go out on me, but if it helps my ankle, I am for it. But there is no easy fix for my ankle. The doc hopes that PT can help stabilize it but with the nerve damage, there is no telling if that can happen. In the mean time, I am just going to go through the motions and see where they lead. If physical therapy proves to be too much for me, I am not going to go ahead with it and will say something. I am just glad the doc didn’t just offer me injections and that was it. But I still feel screwed that my ankle is so messed up when I really haven’t done anything major to cause it to be fucked up.

Right now I am feeling very sad. I am glad I know what is wrong with me (not like I didn’t) but going for physical therapy is going to be hard. I never know if I am going to get a gung ho therapist that thinks that if I don’t listen to him I won’t get better. I need someone that is willing to work with me and if I don’t have that, I am walking. Tough shit. I will find someone I can work with but it takes so much out of me, both mentally and physically. I know my ankle is messed up because I have been partly using it wrong, and partly because it is weak because of cauda equina syndrome. I don’t know what the hinged AFO is going to be like. I just hope it fits in my sneaker like my current one does.

I am in agony. Ankle pain just jumped to 12. I knew it would after all the poking and prodding today, plus walking the blocks to and from the various points I had to go to get to my appointment. I just put a NSAID gel on it to knock off some points. I hope it helps.

I really wish I had someone to talk to right now but there is no one. I really would love to talk to my psychiatrist but she is not available until Monday. I have emailed her all week and have not gotten a single response from her so I don’t think she is getting email where she is. She said she was at a conference. Least now that I know that I have a good doctor, I can cancel the appointment with the surgical fellow for the ankle that I had scheduled for Friday. With any luck, I might be able to see my psychiatrist. That would be wonderful. I miss her as it has been more than three weeks since our last appointment. I had to cancel our last appointment because of pain. She understood but it has been a nightmare trying to reschedule because she is so booked up. And we have been doing this via email so it is frustrating when I don’t get a response within a day or two. I do need her to refill one of my meds. And unfortunately, it is one where I need a hard copy, she can’t fax it.

My therapy schedule is also messed up next week because my therapist needs Tuesday off. Just when I thought things were going to be back to normal, they get fucked up again. I don’t talk with my therapist until Wednesday but I am going to see if we can do a check in on Monday. Hearing her voice some how calms me and lets me know that someone cares. I also need to deal with my father next week which isn’t going to be pleasant. I really wish I didn’t have to deal with him, my blood pressure would normalize for once, though it was good today at the doctor’s office. My pulse was still high. I can never get a resting pulse to be close to normal. It is always in the 80’s or higher.

Lazy stormy day

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

It’s been a cold, stormy day so I didn’t venture outside at all. It is cold in the house as my mother doesn’t want to turn on the heat. So I have been in my bed under the blankets and in a hoodie for most of the day, playing my game. I had no motivation to do anything. I have been waiting for my therapist to tell me there is a time available to talk today but I don’t think that is going to happen. So I am hoping for another check in before the weekend.

My father canceled his doctor’s appointment for today which is one reason I stayed in the house. It is shitty out so I don’t blame him. I really don’t want to leave the house myself. But this is my second day of being in the house and I am kind of going stir crazy. My mother has spent her time well, cleaning her room. I should do the same but I wouldn’t know what to tackle first so give up.

I got a call today from a rehab place to set up an appointment with a new doctor for my ankle issue. Thing is, I don’t want to see another damn doctor for the same problem. I know they are only going to be able to offer me cortisone shots and I don’t want that because I believe (and there has been research on this) it weakens the joint. I already don’t have normal sensation so I don’t want to weaken an already weakened spot on my body. I don’t care how much they push it, it isn’t happening. Then when I say no, they want nothing to do with me. So long, see you later, have a nice day. I also feel like I shouldn’t be wasting a copay on this nonsense.

I really am tired of the doctor game. I am happy with my current regimen, even though I am in more pain lately. But I think that has to do with the weather changing than something being wrong with my ankle. And of course, being depressed doesn’t help. If I could be dead tomorrow, I would welcome it. But I am not actively suicidal. My pain has been minimal today, despite it being cold in the house. I have not really left my room that much today other than the usual stuff so I haven’t used the stairs that much. I just wish I could make my feet warm. Even though they are under the blankets they are cold.

I had no desire to work on anything related to books. I don’t know what is going to motivate me. I just keep procrastinating and I know that isn’t good. I would like to get it done but maybe I will start next year after I write notes or something to get started. I never been a coauthor so I am not sure what that entails. My short story book has been left by the way side since August. I haven’t worked on that in a long time. I don’t think it will sell that much anyway unless I get an agent or something.

I am really tired and feel like I should nap but I told my sister I would watch my niece and it’s getting close to that time. I really am not up for it but her house is heated so I might just go. I still have the AC in my window which isn’t helping to keep the cold out of my room. But then it has been rainy the past few days so I can’t take it out now. Maybe next week.