Post Op

Hey all,

I had surgery Thursday. It went well and I did have a tethered cord and a messed up disc. They repaired that. Aside from horrendous post op pain I am healing as well as can be. I am getting frustrated with how slowly things are going but to be expected. I can’t rush my recovery. So far bladder is functioning the same as it was. I am not drinking a lot so having little outputs. Sometimes the urge is strong enough for me to pee on my own. Other times I got to cath or I just don’t have any urge and have to cath after 4-5 hours. Urologist said I might have to go every half hour in the beginning. Luckily it hasn’t worked out that way yet. Most I am going is every three to four hours, which is what uro wants.

I will be in the hospital until at least Tues, barring any complications. PT has been wearing me out severely so they don’t want me going home until my stamina is a little better. I am progressing every day. I’m just not where they want me to be right now. A lot of movement tends to wear me out so fast. Just getting up to pee is tiring. And there is not a lot of steps from my bed to the bathroom. I still need to call someone when I have to go just in case I fall.

I have hit a bit of more depression because of my frustration of not being able to move the way I used to. Back pain is bad but is getting slowly better. I haven’t had this much pain in so long. I am glad they increased my BT to the same dose I am taking extended release med. I hope my pcp can keep this change while I recover as it really helps. I just don’t like the constipation all these meds are causing. I can’t wait to go home and take Miralax twice a day as I know it might cause colon blow but it is so needed right now. I am so bloated from not going.

Sleep has been elusive but I hopefully will be getting my meds earlier than I did last night. Last night I got them really late so had a difficult time getting to sleep. Plus RN wanted me to take a med at 2 am so I didn’t want to sleep then be woken up. I ended up sleeping until 330 when I woke up to pee. Bladder is good for that. Seems that time is my regular time. I hate it. But I end up cathing to make sure I am empty so I can sleep.

My roommate went home. He was a dude from Maine with similar issues as me with the back. We exchanged numbers and said we’d call. Don’t know if it will happen. He seems to be a good man. Tends to talk a lot in circles but he is an older gentleman.

I hope I don’t have a problem sleeping. I am so tired I feel like I can sleep through the night. Hope I do.

up at 4 am and got a few goals

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!

in a restless state of mind

In a restless state of mind

I had my appointment with the therapist Tues. We discussed the abuse. She asked if I talked to anyone about it. I said no. I kind of did when I was a teen but that lead to bad consequences and I never spoke of it again. Then she asked about my suicidality. She said that she had to keep me safe and I felt like we were going along the path of the “no harm” safety contracts that I swear was not going to work with me at all. But, again, she didn’t get more specific about safety. Just decided to work on a DBT skill, which I don’t even remember what it is. I am supposed to be working on it but fuck, I am in no mood to. I told her I would write the responses in a notebook but I’ve tried to find ANY of the million and one comp notebooks I have and have failed. No idea where they all went. I recently bought two. One I know is in my everyday backpack. Where the other one went, no fucking clue. My room ate it. I know when I am looking for something, one of them will make an appearance.

When I came home from therapy, I got into a fucking flare. My foot went fucking ballistic and stayed that way for almost 36 hours. I woke up at 430 am yesterday and just said fuck it. I was thinking on acting. And yet I was hindered by my psych saying I should call her when I was thinking on acting on my urges. Well, it was 0430 in the morning so I wasn’t going to call her then. I sent her an email and tried to go back to sleep. My mother can always be counted on to disrupt my sleep as she called around 11 or so to see if the goddamn windows were closed as it looked like rain. Thunderstorms were supposed to happen through today. Around 2 I still hadn’t heard from my psych so asked her if calling her later was okay and she responded giving me a time. She called before I could call her at that time and we talked. She asked why my pain is always the cause of my suicidality. I told her it is just too much. I had foot swelling Tuesday night that continued until this morning and it was so fucking painful. I had three different types of pain going on that were so damn high it wasn’t even on a scale. So I just decided it was time to end it. She said no or she would send an ambulance for me. Shit. We are to talk again on Sat. I really don’t want to fucking talk anymore. I just want this fucking suffering to end. My plan is still on. She said she has the pipeline dream of me being better. I told her at least one of us has hope and she said she will hold on to that for both of us.

I got a response from my wonderful PT about what to do about the back situation. She said there are specific exercises to help stabilize the spine and can be done in like 7 sessions. I am not sure if I want to go back to PT as I just ended. I told her I had other fish to fry and when it is done, I will be in touch. I read the report as it came in last night. I have a new herniation at the beginning of my spine at T12-L1. It is minor. The worst one is at L3-L4, which is in the middle of where I had surgery. That is the disc that has gotten worse and is near my L3 nerve root which could be why my bladder is being so dysfunctional. I feel like I am a ticking time bomb. This level is unstable. If the disc goes or if I see a surgical consult, I most likely will need a fusion. I am not going to have a fusion because everyone that I know that has had one has had more pain. From what I read, fusions were only to be for the neck, not the lumbar part of the spine. I am wicked bad at remembering where I read stuff, so not sure if it was a journal or what. Don’t even remember the year but that is what sticks out in my mind. I could be wrong. But it would make sense as to why so many people with fusions have had them fail on them. Not saying everyone with a fusion hasn’t been helped. I just haven’t found those people.

Used to…

Used to…

I used to write in my journals all the anxiety and fear and depression that swept through my heart. The pain of living night after night in despair so great I thought I would never see the light of day again. It was cathartic and once the words were on paper (or in a word doc like they are now), I didn’t have to deal with them. The feelings were out, I felt better. I didn’t have to remember anymore.

I used to write blogs that had some purpose, whether in my clinical papers I wrote or my daily struggles with suicide and depression and chronic pain. It opened a portal so I could share myself with others who were going through the same things. It was the last remaining joy in my life before pain took over. I have been struggling since. Where I would used to write sometimes twice a day and the odd three, I barely write twice a week, if that many. I’ve lost hope in things.

I used to go to therapy with the hope that things would get better. Despite going through 10 in a short period of time (8 years), I still held on that the “right” one was out there. Therapist number 12 I thought was that “right” person until 16 years later we ended, on our anniversary date. She no longer wanted to work with me anymore. I had been in a lot grief since that day. Took me two months to try and figure out if I needed therapy and why I needed therapy. So therapist number 14 came along (13 was the interim therapist I saw while 12 was on maternity leave). He was different from all my previous therapists. He frustrated me more than any of them put together. I skipped sessions because of the anger. Then there were sessions where I felt we were making progress but like the other therapists before him, didn’t go anywhere the following week. In Jan of this year (2019) I realized I couldn’t stay with him after he told me to Google some relaxation stuff for my PTSD. That was the last straw. I had sprained my ankle during this time and decided going to therapy and working on my ankle were going to tax me like it did before. I got physically better, telling him I would go back to him when I was done. I never did.

By March of this year, I was having serious mood shifts of suicidality. In Jan because pain had been really bad, I planned a date to end it. It was the end of March. I had some of my ducks in a row to end it. But the month came and I didn’t have so many ducks as I thought I did. I fell into despair. Pain was keeping me up. The insomnia that I had infrequently, started to become more chronic. I was spending more and more time awake than I was sleeping. Add in not having a therapeutic relationship and I was barely above water. I kept writing my psych of 26 years how bad I felt nearly every day. We were in frequent contact as she was the only person in my team. The day I was to end it, it was raining. I had wanted to end it outside in a desolate place. The rain spoiled it and I had an appointment with my psych that day. I saw my psych as I have never skipped an appointment with her and wasn’t going to start.

April was torturous. By the middle, my psych wanted me to go in the hospital and I said no. I asked her why she wanted me still alive because at that point, I felt so worthless, I had no idea why she wanted me alive other than she “had to.” She told me some good reasons that I still remember. I tried to hold on to those. I starting thinking about writing another book that would be so outside my realm of mental health but would take a lot of research to do it. It would be a challenge and I hoped I was up for it. That lasted a few days. Then I was back in the despair and this time, it wasn’t letting me go.

I used to think that the hospital was a safe haven, a place to recover and get well, learn new coping skills and then be able to face the challenges outside better. With insurances no longer covering long stays, this is nearly impossible. Some people are lucky to stay past three days. Others stay just 24 hours like that has any benefit. I was hesitant to go back in. I was just about as suicidal you could be without actually attempting and I was getting close. There were a few nights where I didn’t think I would make it through the night. I honestly have no clue what kept me here or how I did it. I stayed for three weeks and then my whole world went to smithereens.

I was supposed to see my psych the following week but she changed it to the following Monday. She said she had some news to tell me and I listened. The institution she had been apart of for 30 years was letting her go. She didn’t go into the reasons and I asked her if writing a letter would help and she said no. I have been seeing her for 26 years. My heart broke in a million pieces but I didn’t know it yet. I still had one week left of seeing her and it would be the last until she was some place else, though she didn’t know where yet. She wanted to stay in academia and Boston is the academia capital. All the while I was to see a new therapist, number 15. The first visit didn’t go well. She hammered me with questions, took my history (I tried to stay away from suicide as that freaks mental health professionals out), and who I was seeing for psych. She asked me about my hospital stay and I thought oh shit here we go. She asked what I was to do with crisis. I said call my psych. But according to her, my psych had “terminated” me. I couldn’t comprehend that. I knew my psych didn’t, she said so and she doesn’t lie. She still wanted to be in my care, to take care of me. I didn’t know if I would see this therapist again. She was nonchalant about setting up another appointment with me. I said I give new therapists at least three sessions before deciding if they would work. She agreed on that point.

I don’t know what will happen the next few weeks. I am back to being highly suicidal without a voice. My one or two places where I catharized my feelings are blank, and have been since the day my psych said she was temporarily leaving me. Wed I got a call to see a new psych and I nearly had a meltdown in the lobby of the building where I first started seeing my psych. But I had to see my pcp so had to keep things together. I have had some medical problems this past week that are still unresolved. I never thought my body would be broken down so much at 43, but then, I never thought I would live to see this age.

I used to believe I would always write in some way, shape, or form. I never thought my words would be hard to reach for. Between the physical and emotional pain, the medications I take, and the pressure of trying to stay some what alive for whatever reason when I just want to fucking die, I am at a loss of words. Some times they breakthrough the constriction I am in, the blinders that say that I should die and nothing else matters. My psych asked me if I would be alright for next week, and she said Monday. I told her I didn’t know. I still don’t know. I want to find that desolate place and end it so fucking much. The thought of dealing with CRPS (complex regional pain syndrome) without pain meds is freaking me out, especially as they don’t work as they once did. It is no fault of the medication, just the disease process. Eventually, there will be nothing that will work for it and I cannot cope with that. I cannot imagine spending my life in so much pain when I already spent 28+ years of it managing the mental illness part of me. I used to believe there was hope out there. Now I am not so sure anymore.