Tag: cauda equina syndrome

Agony of Despair

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, CRPS, depression, mood disorders, suicide

Agony of Despair

I had therapy today. I gave her a letter I wrote the other night when I was in a suicidal frame of mind. She said that my treatment is basically in limbo as I am not sure what the recovery is for after my surgery. There may be a way for me to have a telehealth connection but my insurance doesn’t cover it and she has to fight to get it covered. So I maybe without therapy for a few weeks or more depending the outcome of the surgery. She will be able to see me while I am inpatient but I am not anticipating a long hospital stay. Most I will be in for is a week as they like to kick you out soon as you are stitched up. My recovery is going to be at least through the weekend but again, depends on a lot of factors. What I am thinking may not be accurate but I do know I will be there at least through Sunday, if not Monday. I will need home care and/or rehab services as there is no one to care for me at home so my stay may be longer than Monday.

While we were talking she was joking and then I was joking and then she jumped on me to make sure she was saying was understood by me and I just lost it after that. I broke down and I am still reeling from it. Talk about something stupid setting you off. I didn’t allow many tears to fall but I felt like an elephant had jumped on me after the tears stopped. My chest felt so damn heavy. I told her the psychopharm wanted me to think about ECT and she said no one should be bringing up anything to me right now with the surgery that I am facing. She was looking out for my well being and I appreciated that. She is a really good therapist and I am glad to have her in this point in time. I think I will be able to get some work done but it is going to take some time.

Today is the anniversary of when I first attempted suicide. No one knew and I did a bad job of it but I entered the world of self-harm in the process. The goal was to dig into my arm to sever a vein but I never realized how many layers there are to get to that level. The following night was as traumatic as that night and the following day I entered therapy. It took a lot to get me to open up because my father had instilled in me the “what goes on in the house, stays in the house.” I was too suicidal in the week after the attempt. I just started cutting and it was how I expressed my emotions as I didn’t have words for them. I still don’t. That is what went on today. I felt a jumble of shit and just broke down when I was being hammered by questions. My therapist didn’t allow me to jump ship and if I did she lead me back to where I was. I had an anxiety attack that kicked everything off. We were talking about surgery and the next thing I know I am crying. On the way home I wanted to drink so bad. I was thinking about gin and how drunk I would get but those feelings have passed.

I was telling my therapist about how my blog writing has dwindled and writing in general when she picked up the letter I wrote and said no sir. I guess I have to have some kind of person in mind while writing in order to get the words out because once they start flowing, I can go on. She did say that I started to get into something while I wrote but then I stopped midsentence. I had no idea what she was talking about. I kind of just went with it because I do that so often now that I don’t even notice. I just know I feel some strong emotion and I move onto something else. A friend who was reading my blog the other night commented on it. I had to laugh. He said at least I was aware of it. I am aware but after the fact not during. It is really hard for me to sit. Hell even while having severe anxiety in session I was talking about the Sox and anything else to get over the feelings. I know I compartmentalize a lot. It happens with trauma. I told her to expect a lot of talking about the Sox all season. She wasn’t phased only with me coming to see her to talk about the sox. HA. I talked a lot about baseball in my previous therapies and I will be damned not to talk about it in this one as well.

Thing that is bothering me is that she wants me to write out stuff, either blog, journal, letter writing, etc. but I don’t think she gets how damn difficult it is for me. There have been moments where I cannot write what I am feeling because I am too jumbled or I just cannot find my words. It is like they are there but I can’t “see” them. What is worse is that the Invega is taking away my voices so the inner conversations I always have are lost. Granted if I am feeling high emotions, they are there because they always are. They always have been. I don’t want to become psychotic when I am feeling high emotions because that will be bad and potentially dangerous to me. The voices tend to tell me to end my life when medication isn’t holding them back so if I am in a high state of despair, I may act on what they say.

I am glad the drinking urge has passed and I don’t feel like drinking. I have a quarter of a bottle left and I seriously thought I would finish it off. It wouldn’t take much for me to become drunk or buzzed from alcohol because I don’t drink normally. I might have a glass of wine occasionally but that is all I will have. I don’t usually drink to get drunk but tonight I wanted to. Glad there was a line at Walgreens to distract me from these thoughts/feelings.

heaviness continues

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

Heaviness continues

I reluctantly went to my psychopharm appointment today. My ankle/foot flared up just before I had to leave so I really didn’t want to leave the house. The pain sort of got better with me moving but soon as I got near my house, each step was agonizing. I could barely make it up the stairs. My legs feel heavy and the feeling of walking in mud has been going on for more than a week now. My psychopharm wants me to think about ECT as this could be depression. Could also be medication related but don’t know. I have been taking the medication late in the afternoon when I am home in case it makes me so drowsy I need to sleep. If it keeps me up at least I will have my night meds to bring me down. We talked about upcoming surgery and how nervous it was making me. She will be having some kind of surgery in the middle of April so I don’t know if I will see her. It all depends on how well I recover and if I am up to seeing her in person. We have been conversing via the patient website thing so we may have to do that until she returns. I am not sure if someone will be covering her while she is gone. I forgot to ask.

The voices have been quiet since the medication increase, though as I told my psychopharm, it is a little too quiet. I am having some difficulty functioning as I just feel so down and my cognition isn’t there. She isn’t sure if it is depression making it this way or not. That is why she either wants to change antipsychotics and have me start ECT. I probably wouldn’t be a candidate now as I am facing surgery in two weeks. She wanted to start the process and I told her no. I am not ready. I am going up on the antidepressant and antipsychotic so would like to see if that changes my mood. If the antidepressant makes me sick, then I will think more of ECT. I will be out of choices for meds if this fails, either on its own therapeutic level or me having side effects.

I am feeling depressed because right now I am in a lot of pain. I honestly don’t want to keep my appointments tomorrow but I already skipped my uro appointment two weeks ago. I don’t want to miss it again. It is with the nurse practitioner who does the catheter stuff not my urologist. I don’t have an appointment with my uro on the books. I need to make one probably after my surgery to see how things went. She said she wanted to redo the urodynamic testing two months after surgery to see if there is changes. Maybe when I call to make the appointment I will ask about the testing as well. I know they can be pretty booked. My urologist thinks I may have some function return after two months post op. I hope so. I hate thinking I am going to cath the rest of my life. It is too depressing to think about.

about goals and feeling agitated

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

About goals and feeling agitated

So I got some things done. I got my recycles in the bin. I started another bag. I showered and shaved. I did a pretty good job though I missed a spot here and there. I touched up. I shaved the sides and back of my head. It feels good to feel the baldness. It takes some work and my ankle did not like me afterwards that is for sure.

I got into a fight with my sister. She is just being ridiculous and I think I am going to stipulate that I am not going to talk to her until she gets some help. She has more issues than I do. But her germ phobia has gotten out of control. I seriously want to get her toilet seat covers because she complains every single day about something about the toilet. I don’t understand the obsession when it is your own family members. We share the same germs so I don’t get it. Someone else I can see but family? Come on. Now I am fearful of using the bathroom not only because of cathing but now if I should forget to wipe the damn toilet down after I use it. Fuck. Who the hell does that in their own home?? Fucking ridiculous!! I don’t need this stress. It is almost getting to the point where I am thinking of going somewhere else. I can’t be under this much stress just for living at home. No one should have to walk on eggshells where they live for whatever reason. Just talking about it is giving me anxiety.

I got therapy tomorrow. I cancelled today’s appointment because I just didn’t feel like going into Boston late afternoon. I would if it was my therapist but it’s not so cancel! I am not sure I will reschedule the appointment either. It is supposed to be the last one so I might just forego it.

I fucking screwed up my checking account. I spent too much (on bills) forgetting there were two being paid today so now I will be over drawn. I am screwed. I have no idea what the hell I am going to do as the fees are going to kill me. At least I got my meds and paid the money I owe to the mail order company. My doc will be calling in a script today and it won’t go through unless there is no balance.

I haven’t napped though I tried because I got a migraine around 1500. I tried to sleep but I got agitated. I took some perphenazine to try and calm down before I was bombarded with voices. They came anyways and then I was yelling with them about my sister which just made things so much worse. I know I should be in the hospital but because of my medical issues I just can’t. I am too afraid my needs won’t be met or the orders will be wrong so I will be fucked. I’ve had it happen too many times now and I get annoyed and frustrated and then want to leave but can’t because my safety is an issue or the team doesn’t feel like I am ready to leave. Then I will have to deal with the after math that my family will think it is someone’s fault I am in the hospital. They don’t understand that I have serious mental illness. My mother just thinks I need to talk to her to be “fine”. Mind you she wouldn’t understand a thing I go through no matter how many times I tried to explain it. Fuck, she still thinks I am female and tonight I have been going through horrible dysphoria because of the things on my chest. Knowing I have to lose weight to get rid of them just makes me more depressed. You would think it would be a motivator but it doesn’t work that way with depression. If I didn’t have severe depression, I might be able to get motivated. Right now I am just planning on not eating as I don’t know how else to lose. It worked last year. Only problem is that my appetite is sort of back so it is hard not to eat when I am hungry. Hence why I had burritos at 2 am the other night. I ordered my groceries so I will be getting tortillas to make my breakfast burritos to store. I hope to make a lot. I just hope my mother has enough cheese. I know she has a lot of eggs. I might have to buy a dozen as I will be using a dozen. A friend said the secret is 2 eggs per burrito that you want to make. Which makes sense as when I make one, I use two eggs. But this is all for when I have surgery and I have food for when I don’t feel like making something.

My surgeon’s NP called me today to answer the questions that I had. She explained the surgery to me and that they won’t be removing a lot of bone or anything and I won’t need a transfusion. So I was happy about that. I told her I would need home care and she said I would have to talk to the nurse manager on my case when I am inpatient as they and my surgeon arrange that. It all depends on what I need and how I am after surgery. I keep praying that I walk in the hospital and am able to walk out even if it is with a walker. I haven’t decided if I am going to wear the afo or not the day of my surgery. I think I will be okay walking without it. I will have my sister bring my bag with me later that night so it doesn’t get lost. I just plan on having a few change of clothes and my toiletry bag. And catheters. The NP said the neuro floor is mostly private rooms so that is nice. I will know when I wake up if things went okay or not. Last time things were not okay and I knew right away something was wrong but I didn’t know what as I was out of it. I just worry my CRPS foot is going to go berserk for being laid up and manipulated. I hope I don’t wake up in a flare. That will be friggin awful.

up at 4 am and got a few goals

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

Up at 4 am and got a few goals

I woke up around 4 because my bladder was giving me urges. I tried to go on my own and failed so had to cath. I couldn’t go back to sleep right away as I am anxious about my deposit coming through. I am supposed to get paid today. I hate when the deposit takes forever to go through. It usually is in by 330 am but sometimes it takes a couple more hours to pass. One day the bank was having trouble so I didn’t get my deposit till late afternoon/early evening. But soon as it goes through, I will pay my grocery tab even though I don’t really have the funds for it. I might have to forgo putting funds in my Starbucks acct. That really sucks but it is the only way I can afford things right now. Besides the money that I am putting toward my cards will be enough to add funds once the money gets processed. So hopefully it will all work out. Crossing my fingers it does. I cannot wait till my deductible of $250 is met so I don’t have to pay for my meds the rest of the year. It should be met by the end of the week as I have more meds to get. My monthly refills. I am glad they are all together now not spread out over the month.

I have three goals I like to do today. One is to get to the pharmacy for my meds. Second is emptying my recycle bag. Third is taking my trash out. If I can do at least two of the three I will be happy. I changed my sheets yesterday afternoon and it caused such a flare. My back was killing me by the end of the night. It felt like someone was trying to sever my spine in the middle of my back. The pain was awful. I don’t know what it will be like after surgery. I might not be able to sit for long periods like I am accustomed to. That will suck when I have to go to PT and will need to sit for at least 30 mins on the bus ride to the office. I am looking into getting a public assistance ride service for disabled people. It will pick you up and drop you off. I am hoping to have just a pick up at the hospital and then a ride home afterwards but I am not sure if I can do that. I will find out the week of my surgery. Just lovely that I will have that worry prior to my surgery. I still don’t know if I am disabled enough to get it.

So if I feel up to it later on today, I will post my progress on my goals and see how far I went. I hope to do all three but going up and down two flights of stairs three times is going to be tough. My ankle is already tingling and I all I did was use the bathroom. I also got to brush my teeth today. I have been really bad at brushing and I am to see the dentist the end of this week! Oh boy!