Category: cauda equina syndrome

Saturday blog 18

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, depression, suicide

Saturday Blog 18

I slept for most of the morning, which was good because I didn’t sleep good for most of the night. Pain kept waking me up. My brother in law was going to Stop and Shop so I went with him to get a few things. He told me my mother needed milk so I picked it up as well. I didn’t get my fish and chips like I wanted to because I was low on cash. I could just get the essentials, like cream, my powerade, and milk for my mother. That was all that I needed. When I get paid in two weeks, I will do real grocery shopping. I won’t be paying my cell phone bill again because it is already paid for the month. For the first time in months, I will have a little extra money so I might just get another online grocery order. It will save me time and energy from walking around the store. I can just click on what I want.

After the grocery store, I made coffee and watched the baseball game. We won 8-4. In the Bronx. Against the Skankees. HEHEHE. They made a costly error and then loaded the bases and we capitalized on it. Instead of the inning to be over, Aroid took his foot off the bag after review of the play. It was sweet that my favorite player, Brock Holt, then hit a double that cleared the bases. This guy is amazing. He was awesome last year and his awesomeness is continuing this year.

After the ball game, I watched some of my shows. I had to watch the Criminal Minds episode with Gary Sinise. I miss CSI NY so much that to see Gary again was a thrill. He still looks the same.

Other than going to the grocery store, I really haven’t done anything yet I feel really tired. I haven’t played any games all day. It was just sleep, store, baseball game, tv. I guess that is a lot of doing nothing but my ankle would beg to differ. It is hurting like I have been standing on it all day. I don’t know why, as I mostly have been sitting or reclining. But that is the pain syndrome for you. It does what it wants, with no rhyme or reason.

I wonder why is it that if you have terminal cancer and was given only a few months to live, people accept that reality more often than if someone says they are going to kill themselves. I keep thinking about things like this because cancer is held higher than suicide when it is just the same. You are going to die either way. Either through your own terms or cancer’s. And if you survive cancer, you are considered a hero. Yet you attempt suicide, you are shamed and blasted upon. I have accepted that I will probably take my life sometime this year. It is something I have thought about for sometime and though I am not thinking about suicide every day like I used to, I have a specific date that I want to end my life. Not because of shits and giggles, but because I am tired of being in pain all the time, mentally and physically. I know nothing can happen with my life. I fucked it up and there is no unfucking it, not unless I win the lottery. I will never be a therapist because I can’t go back to school. I am in the minority. I am transgendered and never will be accepted by anyone. And I just can’t live with this knowledge. My dreams went up in smoke when I became disabled, when I got diagnosed with mental illness when I was 16. I tried having a life but it just isn’t working out. I am depressed nearly every day for no good reason. I am tired of living this way. It must come to an end. I am just going to die anyway and I rather it be on my terms.

A day of buses

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

A day of buses

I saw my pdoc today. We exchanged stories about being able to bounce back from surgery. She called me a role model as I was so severe with my Cauda Equina Syndrome and can hardly walk. Now, 14 years later, I can walk unassisted. She broke her hip right before Halloween and is still recovering from it. She doesn’t walk right yet, but she will in time. When I saw her a month ago, she was walking with a crutch. No crutch today so that is a good sign. Long as she doesn’t have any setbacks, she should recover nicely. We also talked about my roller coaster month. I seem to have stabilized as this week has been relatively “normal” for me. I am at my baseline depression and hope it stays that way. I still am waiting to crash but hope it doesn’t happen. I told her I haven’t been doing anything different. She asked if it was the weather, and I said I don’t know. I also told her that it might be because I am turning 40 this year, and she said “how did that happen”. Course, I have been seeing her since I was 17. That is a long time to be seeing her. We also talked about how today is my anniversary of becoming an author. She then asking jokingly when my next book is coming out. She already knew the answer as I told her about it the last time I saw her. I told her I might make out a sci-fi story out of the delusions that I was having. I am glad they are gone but man did they seem real.

On my way home, I was about 20 minutes early for the bus so I waited. And waited. And waited. Around 12:40, more than twenty minutes after the bus was supposed to arrive, I tweeted to the T that the bus didn’t show up. They have no explanation. Fucking great. I wasn’t in the mood to walk the 0.4 miles to catch the bus at the end of the road home. So I took a bus that would take me down the street. I missed the bus. Now I could either wait for the next bus at 13:30 or catch another bus that would take me closer to my home, but I would have to walk two long blocks to get there. I decided to test my limits and walk. I took the stop before School Street as I knew that street was hilly and my foot was already hurting from waiting for the 12:25 that never showed. I made it, though my calf muscles ached while I was walking. BOTH of them. I think I really need to walk more as I think they are getting atrophied. I then decided to go to Walgreens and pick up my prescription. There was a fricken line and only one person dealing with the register. So I had to stand the whole time waiting. My legs wanted to kill me. But I needed my prescription and I didn’t want to go out tomorrow to get it. If I wasn’t running low, I would have said the hell with it and picked it up later. I used my new savings card and OMG you would have thought I gave a new prescription or something. That took another twenty minutes to figure out how to process the card. I wanted my pillow just so I could scream into it at this point. Finally everything went through, and I paid only $5 instead of $25. I was happy I saved money but was not happy I had to wait almost a fricken half hour to get it sorted.

I decided to get some popcorn as a treat or meal later. I will make popcorn and just have it as a meal sometimes. I used the last of it yesterday so we needed more. Of course my mother wasn’t happy that I paid three dollars for it. It was MY money, not hers, so I don’t know why she is bitching. Right now, I just want to rest as my ankle is sore and I am wicked exhausted. I woke up at 0600 this morning and made the mistake of going back to sleep. I have been in a sleep hang over since 0800, when my alarm went off. It has been one long day.

My father is not feeling well so I think I will go over his house on Sunday rather than tomorrow to get his meds straight. He ran out of one of his pills but he has other days so I am not that worried. It isn’t until the middle of the week that he needs to take these pills. So I get to rest tomorrow, which I will need to do.

I feel like there is a cloud hanging over me and I can’t shake it. It is getting to be like a vice around my heart. I forgot to tell my psychiatrist about these anxiety chest pains I have been getting. It really feels like I have a weight on my chest when it happens. I am not usually an anxious person so I don’t know why these attacks have been happening. But I have had such a crazy few weeks, I am not surprised that anxiety attacks have been thrown in the mix. I just hope that doesn’t mean my blood pressure is out of control again. I just tried to take my blood pressure but the machine is broken. It won’t hold the air in the cuff. Thing is more than ten years old so I think I might have to invest in another machine. I’ll probably get one my next pay period. There has been one that I have been looking at is for the wrist. I think that will be easier than trying to wrestle with the upper arm cuff one handed. So until I get it, I don’t know what my blood pressure is running these days. I had a manual cuff but I have no idea where that sucker is. I haven’t seen it in months.

Visit with friends

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

Visit with Friends

I visited and had dinner with friends tonight. We were celebrating my friend’s 79th birthday. It was a good evening. My friend’s kids kept us entertained with the going ons in their lives. One is a cheer-something. It’s like cheerleading but more gymnastic. I forget the name that it is really called. I saw videos of her daughter doing flips and such. It was cute. She will be going to Disney for the summit competition there. I am really proud of these kids. I have watched them grow like my own. My friend’s son was telling us that he is into the musical arts and drama. He sings in this thing. I can’t wait to see the videos of him singing. I am sure it will be cute!

We took the commuter rail to and from my friends’ house as it was south of Boston and its easier than driving there. The trains are still running behind schedule. We were supposed to be in Stoughton at 17:30 but didn’t get there till around 17:45 or so. On the way home the train was late again and I almost missed my bus to go home. Luckily it was on time, for once. Otherwise I would have had to wait another half hour in the freezing rain for the next bus. The bus ride home was anxiety provoking for me. It was full, there were people blocking the aisles (one of my pet peeves and anxiety producer), and of course, every single stop was called from the moment we left the station. I just got home about fifteen minutes ago. I didn’t think I was ever going to go home. I had too much to eat so was feeling sick. I got to my room and almost lost the contents of my stomach. I don’t know why I am getting so nauseous. It’s not even smells that make me sick. I just get really nauseous for no reason. It’s driving me crazy. Then tomorrow I have to deal with my cranky father who doesn’t feel good. I think he caught a virus and that isn’t good for a man his age. It can takes weeks for it to clear his system because he is old and has other health issues. I really don’t want to deal with him but I got to do his meds before he flips out. My sisters doesn’t know what he takes and so it is my responsibility.

It’s been a cold raw day. I am happy that we didn’t get snow they were saying we would, but we could if the temp drops. I really can wait for the warmer weather just so I can wear short sleeves again. I hate having to wear long sleeves all the time because it is cold. Sox lost tonight, like I thought they would. I had a feeling Porcello wasn’t going to live up to the hype, especially after he signed his contract. But there were 2 errors on both teams so I am not sure if they were costly or not. So the record is 1-1. Start fresh tomorrow.

I guess I won’t be canceling therapy next week like I was hoping. Bitch therapist said it “deserves conversation so we’re keeping regular times next week”. WTF I am still going to try and get out of Wed. I can play hardball too. I have too much experience with getting out of appointments, though with her, I haven’t been too successful. It is just so aggravating to be in therapy some times when you know it’s not helping. It’s not making matters worse, just isn’t being effective. I am not saying she needs to cure me, just let me limp my own way some times. She doesn’t want me to be alone. I do my best work alone. It’s when I get brilliant ideas on how to help myself or find something new to try. And I am not trying to discourage anyone from therapy, I just have been in it since I was 15 so I think a little break might be useful now and then, even if I am suicidal at times. I know my bad times don’t last forever, even if they feel like they are going to. I just need time to work on ME to make things better. And other times I need someone to bounce ideas off of that will hopefully understand what I am trying to say. Most of the time, what I tell my therapist is out of her league. She doesn’t get the chronic pain that I am but tries to. She know what happens if I don’t get a pain break. She also knows what will happen if I am ever denied my pain medication. I don’t abuse it but I do need it because if I don’t have it, I will end up killing myself because of pain. Not because I don’t have the medication, but because I will be up the creek without a paddle or boat and I will just drown.

I have a busy rest of the week. Tomorrow I see my father and Friday I see my pdoc. I am going to be constipated again because I can’t take a senna while I am out because I never know when it will work. The last time it worked a little too well and I just made it to the bathroom on time. But I was home. If I was out, I would have crapped my pants. So I rather be home when I take it and be safer than sorry. Because if I ever do crap my pants in public, I will kill myself. I have been lucky so far that this has not happened. But then I don’t leave the house until I poop. No one EVER told me this when I got CES, Cauda Equina Syndrome. We never talked about the bowels or bladder. They just assumed everything was fine, if they didn’t ask. Course it wasn’t until I had regular movements that I knew that I couldn’t feel them. I had been constipated so long that hard stool was my life. When things were softer, I just don’t have feeling. And that my friends, is where the trouble starts and why I have to stay in the house when using a laxative to go to the bathroom.

Easter 2015

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

Easter 2015

I had Easter dinner same as always, at my sister’s house. And as usual, I overate. I couldn’t help myself as there was a lot of good food and goodies afterwards. I feel like I should nap, but I did that last night and then woke up around midnight. I even had a cup of my coffee and I am still sleepy.

The day would not be complete without an insult from my father. He said my haircut was lousy. Instead of wearing a hat like I usually do, I decided to fix my hair with gel. He never has a nice thing to say to me. I don’t know why I bother sometimes. I told him thank you after he told me my hair was lousy. It is growing out so of course it looks lousy. But did he really had to say that? Of course he did, because the man doesn’t know how to give a compliment to save his fucking life.

Last night, as I was trying to relax and snooze, my phone was blowing up with text messages. I was really like who the fuck is texting me. I knew it was from Twitter because they were successive texts. For some reason, if the text message has a new emoji, I will get up to 3 messages for the same text. It is so annoying to have the message broken up this way. But I have no control over it. I checked my messages and the person blowing up my phone were all direct messages from a dear friend of mine. She was telling me all the reasons why I should be here and that she needs me to be here, etc. I had messaged her the other night when I was in a bad mood. So she wrote a lovely, albeit multiple, message about all the reasons I should be here. It was really sweet. I haven’t responded yet because I am trying to think about what to say.

I missed the weekly BPD chat this week because I was spending time with my family. For some reason 4 pm comes very quickly on Sunday, no matter what I am doing. I like attending these chats because I know many BPD people and it always gives me insight into trying to understand where they are coming from.

I didn’t sleep as late as I wanted to today. I kept on waking up every couple of hours. I don’t remember the last time I slept more than 5 hours straight. I keep waking up due to pain. I can’t seem to sleep on either my left or right side or on my back. And I can’t sleep on my stomach because that is not good for my back. So I am constantly waking up to change position. It totally sucks. And don’t get me started on relieving my bladder. That starts around 0630 and continues until I wake up. Then I don’t go again until I drink a lot of fluid, which could be hours. It amazes me that I can pee three times, without drinking a drop of liquid yet when I do drink, I don’t pee once! Fucking CES.

Since writing the rant of CES the other night, my stats have gone through the roof. I am a number nerd so I keep track of my numbers. I still want to pass my one day view of 172 one day. But the closest I have come is 118 views. But my goal every day is to have at least 20 views a day. I am happy with that. Anything more than that is a gift.