Category: blogging

2 am thoughts

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

2 am thoughts

I woke up about an hour ago because my bladder said to. I had a difficult time trying to go back so I decided to write. Laptop was doing updates so I had to wait a bit for it to finish before the thing could start. I got a message from my neurosurgeon for me to callback in the morning. I forgot what I sent them so I had to look in the sent messages. You can only look at these messages on the web not through the app. I had asked the surgeon if he would look at the disc that I am concerned about while I am under anesthesia to make sure I won’t have problems in the future with it.

I was looking over my last blog so I didn’t repeat anything here but things are on my mind. I think I do have a UTI as I am getting pain on urination with the catheter. After I void, it stings and is sore. I don’t know if I am not inserting it gently enough or what, you need to put some pressure in order to put it in. I will try to be gentler next time, which will be in a few hours. My body seems to want to expel urine every 4-5 hours. Sometimes the void urge is strong and I am able to go but sometimes it isn’t and I have to cath. Sometimes if I sit and wait eventually I go but this is after like 5-10 minutes of waiting to see if my bladder will go on its own. Just when I think I will have to cath, it goes. So frustrating. I never thought I would be this disabled before. I knew it was a chance with my discs being the way they are but I didn’t think it would happen due to a tethered cord.

Ankle is hurting a bit more than it did the last few hours. I hate when I wake up in a 5-7 level of pain. It makes me want to stay in bed but I got some things to do today so I need to try and do them even though I know it will be hard. I need to get eggs and tortilla wraps. Also need cling wrap and I want fricken Oreos dammit. I love the golden ones better than the chocolate ones but the thins are the best! It has the right amount of cookie and filling. I might get both if they are on sale. Depends on how much the eggs are as I need at least a 2 dozen. I want to make 12 burritos so I need 2 dozen as you need 2 eggs per burrito. Otherwise, you don’t yield as much eggs when you go along. I know because I have done this before. I tried 6 last time on 8 eggs and it didn’t get me very far. I was able to stretch it to 5 but the eggs were not as much as the first. I have trouble judging how much to put in each burrito when there isn’t that much egg. Hopefully using two dozen eggs (at different times) I will yield good egg results and the last burrito won’t be skimpy of eggs.

Next week I got to take off my jewelry. I am going to have my watch in my bag so that I have it. I need my watch as it has a way of centering me. I don’t know if that is the right word. I just feel better with the watch then without. I don’t feel as lost. I want to have my bathroom stuff with me, like catheters and deodorants and what not. I can’t use them day of surgery though. I am going to be catharized during the surgery. I just hope I don’t poop. That is a fear I have which is why I am trying to empty my bowels now rather than later. The new bladder med seems to increase the constipation so I am holding off on taking it until my bowel movements are better. I have been taking Miralax to go but stuff has not been working the way it should and I fear I am going to have colon blow soon. I might have to take a Dulcolax day before surgery so I know I will go as I want my bowels to be as empty as possible. The stuff they give you always causes constipation so I don’t want to be super backed up like I am now. I hate that I will have normal BMs and then nothing for days. I never know what I am doing different that causes this. I am taking almost 2,000 mg of magnesium to try and go along with the Senna and Miralax. The uro NP wants me to talk to my PCP about this to see if there is something else I can do to go but I really don’t want to. I know there is a drug you can take for opioid constipation but that isn’t the only thing backing me up. It is the anticholinergic meds I am taking that is causing this to happen. Plus whatever is going on neurologically isn’t helping my bowels either. So there isn’t just one factor in all of this.

I need to pack my bag of what I will need while in the hosp. It won’t be that many clothes as I will be wearing a hospital gown through most of the stay. I won’t wear underwear again until the catheter is out and I am catharizing on my own. I just want to make sure I have enough underwear with me in case of accidents. I don’t know where the scar will be so I might not be able to wear underwear for a while until the scar heals. I will find out after surgery how things will be. I know that I will be lying flat for 24 hours post op and then I will need to be raised slowly so I don’t get a spinal headache or a tear in the spinal area. Last thing I want is to leak spinal fluid. That would not be good!

Getting sleepy so I think I will go back to sleep now. Writing always helps to calm me down.

hurting and tired of hurting

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

Hurting and tired of hurting

I had therapy today and the therapist wanted me to justify seeing her. I told her my reasons and she agreed with them. We talked about feeling vulnerable as I did last session. Told her I felt small and insignificant. It has been a long time since I felt that way with someone. I don’t know if I can trust her or not to stay. I am scared I will tell her my secrets and then she will leave. We are in limbo seeing as I don’t know how long my recovery is from surgery and what to do about it. I told her my insurance does cover telehealth so she is going to look into it again for me.

After therapy I went food shopping thinking I would be able to handle it. Nope. My legs and ankle hate me right now. I also have a UTI cooking so that is fun. I feel like shit. I got no answers from the urologist about whether or not she is going to treat it. She just wants me to repeat the culture in 2 days. So before my appointment with the therapist on Thurs I will go to the lab to drop off a specimen. I have to remember to bring a cup with me so I just drop it off and not have to sign in or anything.

I spent today sleeping, which is just as well as I needed to sleep. My legs are still sore as hell. My heart feels like it is being stabbed a thousand times. I need a shower but I also need to decide if I am going to shave or not. I am tempted to get my haircut this week rather than next but I know it will grow out by next week so best to wait. But it is killing me as my hair is too long. I can’t do anything with it because it’s out of style. Driving me crazy. I want the short spike look next. I miss spikey hair. The long spike is too long. I will try and shower tomorrow. I need to go out anyways. I need to get some eggs and tortilla wraps so I can make my breakfast burritos.

My foot is already flaring up and I didn’t do much today. I made something to eat and I guess that is my punishment. God forbid I should eat something. I am starting to feel really depressed that this pain is back again after I was mostly not in super pain for most of the day. I hope it doesn’t keep me up. I am going to go lay down again. I just am so damn tired today.

Saturday Blog 07052020

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

Saturday Blog 07052020

I am feeling really depressed today. I have no energy to do anything. I feel like I should make some progress in my room so I might do that after I write this. My back has not cooperated much in standing so will be interesting to see if moving shit around causes it to flair up some. I got Matt Stell’s song “Everywhere But On” in my head so I got it playing on repeat. It is true as I have moved everywhere but on. I might share it with my therapist. I think she likes country as she was excited Zac Brown Band is playing at Fenway. This is the third or fourth year they have played there. I am not that interested as I think a ballpark should just play baseball. I hate it when they set up the stage and stuff. I just cringe. Maybe it is just me.

I sent a message to a reader because I haven’t heard from her in a while. She is doing okay but is really depressed. She is struggling and I felt her pain. I feel bad that people suffer from pain. It truly sucks when you hurt for more than a few weeks. It is like the pain will never go away. I have been trying to figure out if I will get pain relief when in the hospital for my CRPS pain and no one has been giving me an answer about it. The NP had said that if the pain medication the neurosurg team were giving me was not adequate they would consult the pain team and they are “top notch.” I am just worried they will only treat my post op pain and nothing else. I will be on my back laying flat and my legs will be raised so I am glad because my foot won’t tolerate being flat. It has a difficult time when I lean back and put my legs out. It will flare up in a few minutes but soon as I lean forward again, the pain dissipates a bit. It is still there but I don’t feel it as much.

Today is the anniversary of when I started therapy with the school counselor. I remember it was very difficult to open up about stuff and the voices were making things so damn difficult but I couldn’t tell anyone that. It was my secret and I knew people would not be welcoming with this news. Therapy only lasted until the end of the school year and then I saw a social worker for a year before she left after she got married. The other therapist I fell in love and felt she was just seeing me for my insurance money. Also felt like she took advantage of me because she knew I loved her. She wanted me to go to Northeastern just so I could continue seeing her. I had plans on going to Maine for college. But none of those dreams happened because two months after I graduated high school I ended up in the hospital. So by the time I finished high school, I had three therapists. I would have another 8 before I found the one I had for sixteen years. I would have one more then another a year and half later. I have been with my current therapist for eight months now.

Got a week and a half before surgery. I am so fucking nervous it is not funny. A friend that I saw back in one of my hospitalizations wants to see me as my sister is not going to stay with me. She will be there for moral support. It is up to her if she wants to. I won’t say no. I appreciate it as my nerves will be through the roof.

Wowsers

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

Wowsers

Yesterday I was prescribe the bladder medication tolterodine. The pharmacist said to take it at supper time as that would be best so I took it when I got home as it was supper time. I have been feeling dizzy since. I am hoping with continued use the dizziness goes away. I just hope it doesn’t make my constipation worse. But wowsers, is the world spinning on me! I took my blood pressure early this morning and it was low. My pcp had said that after taking all my medications, my blood pressure could drop. Well it did. Whether the low blood pressure and dizziness are related I am not sure. I looked at side effects and apparently, nortriptyline and this med interact with some cardiac side effects. I got to watch that out. My psychopharm doesn’t want me using Zofran too often as it can lead to serotonin syndrome so fuck. All the side effects are similar so I am not sure when what is what. She gave me a list of side effects so if I get them all at once then I know it is the syndrome. I feel so taxed trying to remember everything plus keep track of my bladder and bowel movements. It is stressing me out. I plan on trying to clean my bowels up before surgery so I am not so constipated. My biggest fear though is pooping in the OR while I am under anesthesia.

My mother wanted me to go out today but I told her I wasn’t. I am not feeling up to it after my long day yesterday. I need to rest. I am still not feeling up to par from the side effects of this medication anyway. I feel so drowsy but then I was up almost 20 hours yesterday on 5 hours of sleep. I really didn’t sleep well as I kept waking up to pee. I had to set the med alarm at like 4 this morning because I didn’t want to sleep through with a full bladder. I have it set at five hours intervals, which is roughly the time it takes to cath five times a day. The uro NP wants it less than that but sometimes it is less than that because I could go every three hours or so, especially if I am drinking a lot. She wants me to increase my fluid intake by drinking 16 oz first thing when I wake up. That is half a bottle of Gatorade. I am going to go through a lot of Gatorade so I think I am going to order more next month. Just sucks that I can’t order a large quantity of the same flavor because lemon-lime is my favorite flavor. I get a warning when I am over 10 bottles. I usually order around 25 bottle and then 5-10 of a different flavor to break it up a bit.